I love the holidays and always have since I was a little girl, (many, many years ago). lol. So when I knew I had to have a three day treatment of IVIG during December I was bummed out. It is not just the three days of sitting in a chair hooked up to two IVs for four-five hours, but it is the sickness that comes with it for days after. I was still nauseated Monday after having the IVIG Wed, Thurs, Fri so sick Sat, Sun and Monday and hoping today is better. I have hope. But gee it is Dec. Who has time to take a week off in the middle of Dec? lol. But I have made myself understand it is ok. If I do not take care of myself then how can I enjoy my family when they come for Christmas, or that beautiful Grandbaby. So sit on my butt and do nothing for six days and just know I will get everything done regardless and if I don't, I have a good excuses lol.
I have to say the IVIG did really help last month, I felt good right up to the time of getting the new treatment this month. This is the first time that has happen. So it was great to have that energy. Still pain, but with energy it is not as bad.
I do have an appointment with the rheumy next week, I will talk to him about a few things that are concerning me about the IVIG. Number 1 when I am done, I feel I can not breath that good, chest is heavy I read that Ivig can cause this to happen as it is infused it can fill your cavity's around your lungs, which then takes time to get rid of as the IVIG fluid takes longer to leave the body more so then normal liquid. But in a contradiction it also is said it dehydrates your body thus the reason to hydrate well during and after infusions. It is still confusing to me. But I feel so bloated after for about 4 days. Also I feel some of my encephalopathy symptoms are getting worst, or coming back or flaring or how ever one wants to put it. Now whether or not it is the time of the year but I think it is because the Imuran was decreased too low. I find myself not being able to decide on what to do with my hands when holding something in both, I look at the right, I look at the left one, and I am confused on what to do first. I use to get this a lot. My brain is on overload again, over whelmed, and this is not from Christmas doings as I am ready completely. But other things in my life. But I normally could handle. So this is making me concerned. I know they do not like you on the big guns like Imuran for to long but I can tell, I think it needs to be increased. Also balance is bad, almost fell into the Christmas tree, I don't know what I would have done if I did not catch myself from all the presents that were under the tree. Ripped a few open trying not to take the tree out. But it scares me. Also having constant headaches. Everyday. Nothing works for them, nothing. So I will ask him he is not my neuro but he is the one that decreased the dose of the Imuran because the IVIG was working so well for other autoimmune diseases.
Well another Merry Christmas and a Healthy and happy New Year to you all and I appreciate you all reading my post. It gives me a purpose. :).
I love you ,
Susie
Tuesday, December 16, 2014
Thursday, November 20, 2014
I thought this was such an informative article about two of my issues I thought I would post it and hope it helps others too, it does explain it to me why I feel the way I do. Sometimes I need that.
Top 10 Peripheral Neuropathy & Sjögren’s Facts:
1. Recognize that neuropathic pain is a chronic disease. Just as most causes of neuropathies and neuropathic pain in Sjögren’s do not come on suddenly, reduction of neuropathic pain can take a while.
2. Initial and predominant neuropathies in Sjögren’s can occur anywhere in the feet, thighs, hands, arms, torso and/or face.
3. Many different symptomatic therapies for neuropathic pain are available. Both physician and patient awareness of potential benefits and side-effects can help tailor an appropriate approach.
4. While the class of tricyclic anti-depressants (TCAs) often constitutes a first-line tier of therapy in other neuropathy syndromes, the TCAs can increase mouth and eye dryness and therefore are not routinely used as front-line therapies in most Sjögren’s patients.
5. Electrophysiologic tests may help in the diagnosis of neuropathies affecting larger nerves which are coated by an insulator called myelin. However, neuropathies affecting smaller-fiber nerves that lack this myelin coating cannot be detected with these tests.
6. Special diagnostic tests, including the technique of superficial, punch skin biopsies (small biopsies of three millimeters and not requiring any stitches), can help in the diagnosis.
7. A relatively rare neuropathy can cause significant weakness in Sjögren’s patients. In contrast to other neuropathies which develop slowly, this neuropathy can present with very abrupt-onset of weakness. This so-called “mononeuritis multiplex” occurs because the blood-flow through vessels which nourishes nerves is suddenly compromised.
8. In general, immunosuppressive medications are almost always warranted to treat “mononeuritis multiplex” neuropathy. In contrast, the role of immunosuppressives is not well-established in other neuropathies, including neuropathies that cause pain but are not associated with weakness.
9. Sjögren’s patients frequently wonder whether pain associated with a neuropathy means they are at an increased risk for more severe motor weakness. While there are exceptions, if weakness is not present at onset, it most likely will not occur.
10. Neuropathic pain can be alleviated and assuaged, although there may initially be a “trial-and-error” process with different and perhaps multiple agents.
The information from this post, provided by rheumatologist
Monday, November 17, 2014
Fourth IVIG Treatment
I had my fourth treatment this past week. Wed, Thurs, Fri. It is Monday and I still have a headache. Now whether it is from the IVIG or some other wonderful thing I have, it is there, can not hardly see. I know I did not take it easy after the treatment that so many tell you to do, but no doctor has ever told me to go home and rest, it is just that you feel so crappy that you do. LOL. This time I felt like I was going to collasp. My legs still do not have the strength in them. I have done a lot, this weekend regardless, pushing it, it is this time of the year, and giving up almost a week a month drives me nuts. But if it helps it is worth it. The first two I had was like a miracle drug, I walked a mile, I did things around the house I have not been able to do, but now the last two are just sort of bla, do not recognize any difference. I did read that there was a bad batch of IVIG and maybe that was me, I also read that a doctor had told one of his patients that it is like a crap shoot, because you have 1000 people donating their plasma and you never know what you are getting. That makes sense to me, but for 24,000 a shot, I would think I should be running a marathon by now lol. I feel guilty over the cost of this medication, I really, really do. I pray it helps me stop the progression of my autoimmune diseases and sfn.
I don't know if I am having a relasp of HE (autoimmune/ Hashimoto's Encephalopathy) or not. I have headaches the shooting brain pain, my legs are so bad, I can not walk around only in the house, my balance is iffy. My brain hurts. Truly it does. My eyes hurt. My rheumy cut back my Imuran to 25mg a day compared to 200mg I was taking when first dx with HE and myositis. But this has been a gradual thing, was on 50mg which seemed to be ok, but now three months into the decrease I am having these symptoms, and even dragging the right leg. I can not believe this as getting the IVIG should be enough but I guess it is not. I am going to try to hold out until I go see the rheumy in Dec, but if I can not I will email him and my neuro and see if they can discuss this between the two of them. I am so sure it is due to the lowering of the med. He wants me off because it does have serious side affects, such as cancer, so I respect him for wanting me off.
Well hope to write more later hopefully I will tell you all I am dancing, and singing, and walking miles lol
Susie
I don't know if I am having a relasp of HE (autoimmune/ Hashimoto's Encephalopathy) or not. I have headaches the shooting brain pain, my legs are so bad, I can not walk around only in the house, my balance is iffy. My brain hurts. Truly it does. My eyes hurt. My rheumy cut back my Imuran to 25mg a day compared to 200mg I was taking when first dx with HE and myositis. But this has been a gradual thing, was on 50mg which seemed to be ok, but now three months into the decrease I am having these symptoms, and even dragging the right leg. I can not believe this as getting the IVIG should be enough but I guess it is not. I am going to try to hold out until I go see the rheumy in Dec, but if I can not I will email him and my neuro and see if they can discuss this between the two of them. I am so sure it is due to the lowering of the med. He wants me off because it does have serious side affects, such as cancer, so I respect him for wanting me off.
Well hope to write more later hopefully I will tell you all I am dancing, and singing, and walking miles lol
Susie
Thursday, October 2, 2014
Another Week, Another Treatment
One more week to go. Another treatment of IVIG. This time it will be for 4 hours each day to help with headaches. So if it still is bad I will ask to go longer.
It is so weird the connective tissue disease that I have and has caused swelling in my hands for a few years now is getting better since the last treatment. I will say I did push those two days I had such energy and felt so good. Suffered with my good old joint pain and muscle pain, so will be more careful when I get the next treatment. I know I just want to push it to fast, so hopeful, so excited over the possibility's of what I might be able to do again. I know I will still be chronically Ill but maybe with a little more water in the cup half full.
Lets talk about Hashimoto's Encephalopathy for a min. Still looking for stories of patients or loved ones for the 2nd edition to come out sometime next spring. We would love your story. Every time someone tells me they have bought the book and it has helped them as they do not feel so alone after their dx of HE. I feel so good inside. That is what it is about. Helping others who are dx with this rare disease. We now have T shirts that have our logo on them done and ready to ship to me to send out exciting. Then we will do a hoodie and caps. I am excited over this as I feel anything we can do to bring awareness is only going to help. We were also asked to speak to a convention of 300-500 student nurses next spring how wonderful that would be to help bring awareness to these young and upcoming students. Maybe just one would help to recognize the symptoms of one patient who has HE would be so worth it. We will see it is 15 hours away from me. Our Non profit would have to pay for the transportation, but we will see what we can figure out. Maybe if we sell enough T shirts and sweatshirts, lol. But it is an honor to be asked.
We have gained so many more HE patients to the website since the book came out. Amazing. It is suppose to be so rare, so under dx yet we are seeing such an up swing of people being dx. There still are the poor patients trying to get dx, doctors who still say they do not believe in the dx, (what) how can they say that when it is recognized government rare disease site. This is where there is more need for education even for the doctors.
Well time to go, until we meet again,
xoxoxo susie
It is so weird the connective tissue disease that I have and has caused swelling in my hands for a few years now is getting better since the last treatment. I will say I did push those two days I had such energy and felt so good. Suffered with my good old joint pain and muscle pain, so will be more careful when I get the next treatment. I know I just want to push it to fast, so hopeful, so excited over the possibility's of what I might be able to do again. I know I will still be chronically Ill but maybe with a little more water in the cup half full.
Lets talk about Hashimoto's Encephalopathy for a min. Still looking for stories of patients or loved ones for the 2nd edition to come out sometime next spring. We would love your story. Every time someone tells me they have bought the book and it has helped them as they do not feel so alone after their dx of HE. I feel so good inside. That is what it is about. Helping others who are dx with this rare disease. We now have T shirts that have our logo on them done and ready to ship to me to send out exciting. Then we will do a hoodie and caps. I am excited over this as I feel anything we can do to bring awareness is only going to help. We were also asked to speak to a convention of 300-500 student nurses next spring how wonderful that would be to help bring awareness to these young and upcoming students. Maybe just one would help to recognize the symptoms of one patient who has HE would be so worth it. We will see it is 15 hours away from me. Our Non profit would have to pay for the transportation, but we will see what we can figure out. Maybe if we sell enough T shirts and sweatshirts, lol. But it is an honor to be asked.
We have gained so many more HE patients to the website since the book came out. Amazing. It is suppose to be so rare, so under dx yet we are seeing such an up swing of people being dx. There still are the poor patients trying to get dx, doctors who still say they do not believe in the dx, (what) how can they say that when it is recognized government rare disease site. This is where there is more need for education even for the doctors.
Well time to go, until we meet again,
xoxoxo susie
Wednesday, September 24, 2014
2nd Round Of IVIG Is The Side Affects Worth It?
Yes, Yes, Yes. The side affects are worth it. I did have the headache from Hell again, had to hide my head in pillows so no light would hit my face and eyes, could not move because of the pain. My pain pill did not touch the headache pain, took extra strength Tylenol instead. But here it is one week later, and I can tell you it is so worth how I feel.
Yesterday for the first time in abut two years, I took a walk that was about 1 mile long, yes I was so excited to go, I made it half way sat at a friends, for a few mins, got back on the road and finished the walk. It was so beautiful, sun shining, we were in the county, had the puppy with me on a leash. We looked at everything, cat tails, pussy willows, the golden fields. It was beautiful and such a gift to me. The IVIG has certainly helped me. I slept so good from physical activity then from physical pain. I did take my cell phone with just in case lol. But did not need it. YEAH.
So today I thought lets push it, went swimming for an hour. It felt great. But I do realize that two days in a row right now maybe a little much, as my joints in my knees are acting up and am in pain right now, but you know what I do not care as it was all worth it. It is so encouraging.
IVIG only helps, research says, if you have autoimmune diseases for which is causing the small fiber neuropathy. This is unfortunate, as it could help so many. Also, the cost of the IVIG is so high that a lot of insurance companies will not cover this treatment. This is too bad. It will add such a better higher quality of life.
It does take a week out of my life every week before I feel I can do much again. I do get a lot of the IVIG. A high dose. But they are now running a saline line with it, and next month they will be doing it for 4 hours a day verses 3 in hope that the pain wont be so bad. So 15, 16, 17 of Oct I go, and I know to expect the week after to be lost, but is it worth it? I will make it worth it. I will take more walks, clean my house, shop,. Yeah lets go.
Yesterday for the first time in abut two years, I took a walk that was about 1 mile long, yes I was so excited to go, I made it half way sat at a friends, for a few mins, got back on the road and finished the walk. It was so beautiful, sun shining, we were in the county, had the puppy with me on a leash. We looked at everything, cat tails, pussy willows, the golden fields. It was beautiful and such a gift to me. The IVIG has certainly helped me. I slept so good from physical activity then from physical pain. I did take my cell phone with just in case lol. But did not need it. YEAH.
So today I thought lets push it, went swimming for an hour. It felt great. But I do realize that two days in a row right now maybe a little much, as my joints in my knees are acting up and am in pain right now, but you know what I do not care as it was all worth it. It is so encouraging.
IVIG only helps, research says, if you have autoimmune diseases for which is causing the small fiber neuropathy. This is unfortunate, as it could help so many. Also, the cost of the IVIG is so high that a lot of insurance companies will not cover this treatment. This is too bad. It will add such a better higher quality of life.
It does take a week out of my life every week before I feel I can do much again. I do get a lot of the IVIG. A high dose. But they are now running a saline line with it, and next month they will be doing it for 4 hours a day verses 3 in hope that the pain wont be so bad. So 15, 16, 17 of Oct I go, and I know to expect the week after to be lost, but is it worth it? I will make it worth it. I will take more walks, clean my house, shop,. Yeah lets go.
Monday, September 1, 2014
RASH, HIVES, HE, IVIG, CONNECTIVE TISSUE?
Well now, lets see rashes all over my legs, on both arms, lets see what could it be? From the IVIG, the HE, Connective tissue disease, photosensitivity? So what is it from? Should I go to the dermatologist, the rheumatologist, the primary? Who should I see? I pray it is not from the IVIG for I would not want to stop getting that miracle treatment. But what ever it is I have had it for a week, slightly itchy but it reminds me of what I had back before all of my dxs of the autoimmune diseases. I had a rash/hives on the back of my legs from ankle to butt, then on the arms, and it lasted for 8 months, yes 8 months, had treatments of creams, powders, pills, steroids, I had it all, steroids would stop the intense itching for about a day or too, but when the steroids were done the itching came back. So much worst at night. I stopped wearing pantyhose, tights, had to wear the loosest clothing I could find as not to irritate it more. So watching it close.
We are taking a survey of symptoms on our Hashimoto's Encephalopathy page one of them is about rashes. Many, many of us had rashes that the doctors could not explain before the dx of HE. Weird, because why or what in the brain would cause this? Rashes I would think is a connective tissue thing, so I know why I had it, but why the others, they do not have the issues I have just the HE so really why? I think as time goes on and more research is done they will find a connection that they do not know now.
Thoughts at large. Warning, lol. I want to know why? Why are people not as giving of their patience and time and love as I was when I was a young married woman. I have some personal family issues going on, and yet the people that I depended on and family members I trusted my life with and love with all my heart have disappointed me beyond words. I have always been there for all of them, no matter the cost to me. But yet now I am getting the "I don't want to hear it" Don't bother us with this any more" It upsets us too much. Well no one stops to think of what I have endured through the years and all the problems. It is a selfishness I never thought I would see from my family. I am hurt. First I am told they want to know what is going on, mad because I keep the issues to myself, then they are upset when I do tell them.
They obviously don't recall all the times I took with my sick brother, my mom for years, their own illness, and personal issues. But here I am Ill myself for which I hate to admit too, hate it. But they are causing more stress for me then I need, they are adding more to me, then I deserve by being selfish, and self serving. Yes I understand not wanting to think about bad stuff things that make us upset, but I have had years of it, years, and kept going on, yet now, once again I am alone, dealing with issues, that everyone said they wanted to know, but really didn't.
That is enough of that. So one does not wonder why my immune system is so haywire. Maybe I should not have cared or took care of people I loved for all these years right, maybe I would not be so sick? But this is not my personality, my nature. I was brought up to care about people, love them all and I still do, even the people who hurt me, I pray for, and care about. So I guess things are just different now.
Now really that is enough, lol. Done, finished. To all that maybe reading this that would be interested, we are now selling Hashimoto's Encephalopathy T shirts. They are available on our www.hesaonline.org web site. They are very nice and would help to fund research on this very rare disease.
Hope all had a wonderful labor day weekend. I can not believe it is Sept 1, 2104.
We are taking a survey of symptoms on our Hashimoto's Encephalopathy page one of them is about rashes. Many, many of us had rashes that the doctors could not explain before the dx of HE. Weird, because why or what in the brain would cause this? Rashes I would think is a connective tissue thing, so I know why I had it, but why the others, they do not have the issues I have just the HE so really why? I think as time goes on and more research is done they will find a connection that they do not know now.
Thoughts at large. Warning, lol. I want to know why? Why are people not as giving of their patience and time and love as I was when I was a young married woman. I have some personal family issues going on, and yet the people that I depended on and family members I trusted my life with and love with all my heart have disappointed me beyond words. I have always been there for all of them, no matter the cost to me. But yet now I am getting the "I don't want to hear it" Don't bother us with this any more" It upsets us too much. Well no one stops to think of what I have endured through the years and all the problems. It is a selfishness I never thought I would see from my family. I am hurt. First I am told they want to know what is going on, mad because I keep the issues to myself, then they are upset when I do tell them.
They obviously don't recall all the times I took with my sick brother, my mom for years, their own illness, and personal issues. But here I am Ill myself for which I hate to admit too, hate it. But they are causing more stress for me then I need, they are adding more to me, then I deserve by being selfish, and self serving. Yes I understand not wanting to think about bad stuff things that make us upset, but I have had years of it, years, and kept going on, yet now, once again I am alone, dealing with issues, that everyone said they wanted to know, but really didn't.
That is enough of that. So one does not wonder why my immune system is so haywire. Maybe I should not have cared or took care of people I loved for all these years right, maybe I would not be so sick? But this is not my personality, my nature. I was brought up to care about people, love them all and I still do, even the people who hurt me, I pray for, and care about. So I guess things are just different now.
Now really that is enough, lol. Done, finished. To all that maybe reading this that would be interested, we are now selling Hashimoto's Encephalopathy T shirts. They are available on our www.hesaonline.org web site. They are very nice and would help to fund research on this very rare disease.
Hope all had a wonderful labor day weekend. I can not believe it is Sept 1, 2104.
Saturday, August 23, 2014
Next IVIG
I had an appointment with my rheumatologist Weds. He is the one that recommended for me to receive the IVIG, convinced my insurance company that I needed it. I so appreciate all his effort. But anyway went Weds to discuss what to do with the severe reaction I got from the first dose of IVIG. He and I have a plan for next month when I receive my next round of this magical IV. We will divide the dosage up into three days. We will slow the drip down so that I am not receiving it so fast. So I am thinking I will be there for about six hours instead of four and a half for three days in a row. This is fine with me. I want it to work, I want to feel better, I want to be able to walk for longer then five mins. Take the dogs for a walk. Shop with my girls. This is my goal. But I can not tolerate the headache. I know now I should have gone to the ER. But I am stubborn, but next time, I wont chance it. I will go if it gets that bad again but hopefully it wont with the changes. Dr. also said he will order a IV of some anti nausea meds also before I get the IVIG. The other pills he ordered for me I will take the three days of the IVIG to help calm the headache. We will go from here and see how this works. Crossing fingers, toes, legs, arms, lol what ever I can cross.
By Saturday of the week of the IVIG I was feeling better, slight headache, slight nausea. But not too bad, but Sunday, I felt so much better I could not believe it. I actually went out and cleaned the garage, lol. I had energy, and the pain was minimal. I was so proud of myself and so hopeful with this treatment. But then Monday came, and I slept almost all day, lol, Tuesday afternoon, slept also. lol. Cleaning the garage was worth it though, one good day is worth all the cruddy ones.
I have had a week of blood pressure issues, up, down, up, down. and a feeling of burning, the house will be a comfortable 70 degrees but to me it feels like it is 100 degrees. I have asked others who receive IVIG and it seems to be a common side affect.
Our Hashimoto's Encephalopathy HESA foundation is moving forward. We are producing our first ever t shirt, I have a design we will use for a hoodie. We will do buttons, caps, etc. We are pushing for awareness one item at a time. Also starting to take personal stories from HE sufferers for the 2nd addition of our book. Hopefully after the first of the year, at least in 2015 we hope to have it out. Along with the short documentary that my son Scott is working on. We have not moved mountains yet but we have moved small hills and I for one feel very proud of what we all have accomplished. It brings something good out of something not so good, being sick with chronic illnesses.
By Saturday of the week of the IVIG I was feeling better, slight headache, slight nausea. But not too bad, but Sunday, I felt so much better I could not believe it. I actually went out and cleaned the garage, lol. I had energy, and the pain was minimal. I was so proud of myself and so hopeful with this treatment. But then Monday came, and I slept almost all day, lol, Tuesday afternoon, slept also. lol. Cleaning the garage was worth it though, one good day is worth all the cruddy ones.
I have had a week of blood pressure issues, up, down, up, down. and a feeling of burning, the house will be a comfortable 70 degrees but to me it feels like it is 100 degrees. I have asked others who receive IVIG and it seems to be a common side affect.
Our Hashimoto's Encephalopathy HESA foundation is moving forward. We are producing our first ever t shirt, I have a design we will use for a hoodie. We will do buttons, caps, etc. We are pushing for awareness one item at a time. Also starting to take personal stories from HE sufferers for the 2nd addition of our book. Hopefully after the first of the year, at least in 2015 we hope to have it out. Along with the short documentary that my son Scott is working on. We have not moved mountains yet but we have moved small hills and I for one feel very proud of what we all have accomplished. It brings something good out of something not so good, being sick with chronic illnesses.
Thursday, August 14, 2014
First IVIG In Fusion Yesterday WOW
Wow
I am sick, the IVIG whopped my ass and they only did half. The experience its self was nothing, went easy, but the very well educated nurse said, I do not believe we can do this all in one day, she said the first loading dose is always higher. So 4 1/2 hours later I was done with my first treatment, a small headache coming but she gave me something in my IV to help minimize. Got home, felt, funny, but not like everyone talks about. Talked to my children and fellow IVIGers and said wow I am going to be a lucky one I think, and WHAM it hit. The headache from HELL. I could not believe it, all night long, I could not sleep move my head, or leave it still, no matter what I did, I hurt so bad. Thought of the ER because you can get Meningitis but sweated it out. Then I got cold, shaking, then got up at five am to go again for second treatment and wanted to cry. So much pain, and then nausea oh my, I thought I was going to loose it. I laid back on the bed, trying to close my eyes to stop the nausea, the headache, tried to call the infusion center to ask if I could skip todays, but could not get anyone, my appointment was for 8:30am so laid on the bed until 8:00 and took a fast shower, brushed my teeth, got dressed same clothes as yesterday I was to sick to care, and off I went. Got there and the great nurse I had said, oh wow maybe we should put off todays. A sigh of relief came over me in between the pain in my head and the nausea in my stomach. She called my rheumy who said, lets wait until next week to finish it. prescribed anti nausea pills, (that worked like magic). But the headache, wow, he prescribed some pills for tonight when I go to bed, said they will make me feel to dizzy to take during the day. (Oh how I wanted to take those dam pills). So went to bed, with the dogs, the little one barking for which I wanted to strangle him, the pain every time he barked. But made it through the day, now sitting here trying to get water in me as I know you are suppose to drink a lot of it and I wasn't because it hurt to swallow even the swallowing motion moved my head.
So moral of this story is, I sure as hell hope this is the answer to my autoimmune diseases, and small fiber neuropathy. Because this pain has to be worth something, right?
I am sick, the IVIG whopped my ass and they only did half. The experience its self was nothing, went easy, but the very well educated nurse said, I do not believe we can do this all in one day, she said the first loading dose is always higher. So 4 1/2 hours later I was done with my first treatment, a small headache coming but she gave me something in my IV to help minimize. Got home, felt, funny, but not like everyone talks about. Talked to my children and fellow IVIGers and said wow I am going to be a lucky one I think, and WHAM it hit. The headache from HELL. I could not believe it, all night long, I could not sleep move my head, or leave it still, no matter what I did, I hurt so bad. Thought of the ER because you can get Meningitis but sweated it out. Then I got cold, shaking, then got up at five am to go again for second treatment and wanted to cry. So much pain, and then nausea oh my, I thought I was going to loose it. I laid back on the bed, trying to close my eyes to stop the nausea, the headache, tried to call the infusion center to ask if I could skip todays, but could not get anyone, my appointment was for 8:30am so laid on the bed until 8:00 and took a fast shower, brushed my teeth, got dressed same clothes as yesterday I was to sick to care, and off I went. Got there and the great nurse I had said, oh wow maybe we should put off todays. A sigh of relief came over me in between the pain in my head and the nausea in my stomach. She called my rheumy who said, lets wait until next week to finish it. prescribed anti nausea pills, (that worked like magic). But the headache, wow, he prescribed some pills for tonight when I go to bed, said they will make me feel to dizzy to take during the day. (Oh how I wanted to take those dam pills). So went to bed, with the dogs, the little one barking for which I wanted to strangle him, the pain every time he barked. But made it through the day, now sitting here trying to get water in me as I know you are suppose to drink a lot of it and I wasn't because it hurt to swallow even the swallowing motion moved my head.
So moral of this story is, I sure as hell hope this is the answer to my autoimmune diseases, and small fiber neuropathy. Because this pain has to be worth something, right?
Monday, August 4, 2014
Hashimoto's Encephalopahty Symptoms Showing Its Self Again
Yippee, there are HE symptoms starting again. Scares the hell out of me. Seeing things out of the side vision and they are moving. I feel myself fighting to get my words out of my mouth, to say the right word for the write thing. Really balance off worst then ever, tipping over standing still.
I was driving down a side road Saturday coming from helping a friend. As I was driving a house in front of me, had a drive way with a car in it. Well the car was backing up, so I slowed myself down, the car was still moving, but as I got closer the car was still, had not moved, not at all, nobody in it, Nobody. WOW my heart pounded. Got home, and thought be careful Susie, be careful driving. As the panic wore off, I started to notice things moving so I thought in my vision, then I had hearing hallucinations start. I kept getting up to see if our dogs were barking in their kennels and they were sleeping finally asked my husband if he heard anything. He looked at me and said, no. But again I thought wow, I have bad hearing to begin with, I don't hear things I should now I am hearing things that are not there.
I do not know if I should notify the neuro or not, but I am starting the IVIG next week, so if I can hold off until then. But then the back of my mind I think maybe I need a ten day pack of steroids to get it back in its place. Not sure what to do. HE is such a weird, disease, with everyone who has can have different symptoms. I know my neuro would make me have my thyroid antibodies taken, but It does not matter to me, because they have been above normal for a long time, and the antibodies levels do not really co inside with the symptoms of HE. So just thinking, watching my symptoms close. But not going to far driving.
I will be making an eye appointment with a MD because of the Sjogrens and other issues I carry with me. I can make sure then that there is nothing wrong with my eyes, and it is coming from the brain. But I am sure it is. Stress has taken its toll. But I maybe able to halt it before it gets worst. Come on IVIG. I know they say it can take 3 months to help but, I have so much hope.
I was driving down a side road Saturday coming from helping a friend. As I was driving a house in front of me, had a drive way with a car in it. Well the car was backing up, so I slowed myself down, the car was still moving, but as I got closer the car was still, had not moved, not at all, nobody in it, Nobody. WOW my heart pounded. Got home, and thought be careful Susie, be careful driving. As the panic wore off, I started to notice things moving so I thought in my vision, then I had hearing hallucinations start. I kept getting up to see if our dogs were barking in their kennels and they were sleeping finally asked my husband if he heard anything. He looked at me and said, no. But again I thought wow, I have bad hearing to begin with, I don't hear things I should now I am hearing things that are not there.
I do not know if I should notify the neuro or not, but I am starting the IVIG next week, so if I can hold off until then. But then the back of my mind I think maybe I need a ten day pack of steroids to get it back in its place. Not sure what to do. HE is such a weird, disease, with everyone who has can have different symptoms. I know my neuro would make me have my thyroid antibodies taken, but It does not matter to me, because they have been above normal for a long time, and the antibodies levels do not really co inside with the symptoms of HE. So just thinking, watching my symptoms close. But not going to far driving.
I will be making an eye appointment with a MD because of the Sjogrens and other issues I carry with me. I can make sure then that there is nothing wrong with my eyes, and it is coming from the brain. But I am sure it is. Stress has taken its toll. But I maybe able to halt it before it gets worst. Come on IVIG. I know they say it can take 3 months to help but, I have so much hope.
Saturday, August 2, 2014
Warning God is the Topic
Wow two posts in one week gee I think it is because I have not felt like I can do too much more lol.
I just want to say, as much as we have been through, the sickness, the financial burden of having only one income when I had to quit my job. Our home burning down three months after the diagnose of Hashimoto's Encephalopathy, my mom passing away three weeks after the house burning. My mom was my best friend, my husbands best friend. So the last has been beyond words. My husband who is a recovering alcoholic, started to drink again. I was diagnosed with even more autoimmune related diseases. I just keep piling them up. lol. Still struggling with our home insurance after two and a half years, the lawyer has already taken all of our replacement money for our goods we lost. (Forty years of memories). We have nothing.
But we are alive. We were saved from the fire. Miracle, yes I believe so.
I have had my share of miracles in my life I believe God has given us. I am not a showy religious person, never have been not comfortable sharing the word with others, or my feelings I have deep in my soul. But they are there.
The night of our fire, I went to bed, begging God for us not to lose our home to financial reasons, ( I was not working because of the illnesses I had, neurologist told me I would die if I kept working) so we were struggling so hard, to stay a float, so I went to bed Feb 23, 2012 begging God to help me come up with a way to save my beloved home. A few hours later, we were woke up with the miracle of the paper boys going by seeing the fire on the porch. They knocked, and knocked to get us to hear them, (we slept on a 2nd floor, and both are very hard of hearing) But the miracle is they woke us up and we did get out as the flames were licking behind us.
The feeling that God let me down was so heavy in my heart. He instead of helping me save my home he took it all away, everything in it, everything, nothing was saved, a 5,000 ft old Victorian home gone. I could not see beyond what I felt was a betrayal of my believes. I never prayed for myself, always for someone else. Never for me, as I felt I had strength for myself, but others needed my help praying for them. So the one of the few times I asked for myself, and family, I was betrayed. But how could I feel this way, I was alive, husband, was alive, dog, was alive. What is wrong with me?
So as the long job of documenting items contacting people, trying to find a place to live, I prayed once again, begging God to please keep my mom healthy, alive (she had dementia in the nursing home and had gone from good to bad, to good again several times). I begged him to not let her die now, I did not think I could handle one more thing.
Well after the fire, my husband was dx with macular degeneration at the age of 57 very young and started 4000.00 shots monthly for stopping the progression.
Jump ahead three weeks and I get a call from my moms nursing home, and they tell me my mom is serious, she could die anytime. What God? Did you leave me again? I wont be able to take this. But on I went and sat by my best friends bedside. I watched my mom decline for about 5 days. I was numb now. I was numb. Where are you God? What have we done? Yes my cup is half full, I am alive, but my god, what more can we go through.
So Mom passed away with me laying across her sobbing. A women so full of life robbed from her from the dementia, the fun loving, smart, women, mom now God took her body from me too.
I am numb, the Hashimoto's Encephalopathy had taken away almost all of my emotions, I was numb, could not feel deep in my soul anything, good, bad, happy, sad. Except for the day my mom died.
So we found a home to move into quick, bought a couch, and friends gave us chairs, and a kitchen table, along with a dining room table, my children brought us clothes to wear and we had moms funeral. With my brothers meeting here because I am the only one in town. I am numb. Please God let me get through this. Please God don't let me have a flare up, so I can not talk, or walk. Please God don't let me have a flare up of any of my other autoimmune disease that will hamper my ability to function during the funeral. Please God.
So then my husband started to drink more, I can not take it, making my stress worst, doctors are saying to leave because the stress is making my diseases progress faster. But I said words in front of God for Better or For Worst. So I need to help him in any way I can. But now I am afraid to pray for anything I am afraid if I pray I will get something worst then what I am dealing with already.
Well just this week have I felt all of a sudden that God loves me. He is there for me. He is watching over me, and my husband, children and grand daughter. He is there. He has a purpose for us. I need to believe again, I need not to be afraid of him. He is in my heart again where he belongs.
The Hashimoto's Encephalopathy causes me to forget to pray sometimes, memory problems is an issue with us sufferers. But God knows what I am thinking and when I say to someone I will pray for you I am even if I don't actually say a prayer he knows my intentions are good.
So God I love you and thank you for everything you have given us, even my autoimmune diseases, Bob's issues we are fighting through, the strength to get through everything that we have gone through. Thank you.
I just want to say, as much as we have been through, the sickness, the financial burden of having only one income when I had to quit my job. Our home burning down three months after the diagnose of Hashimoto's Encephalopathy, my mom passing away three weeks after the house burning. My mom was my best friend, my husbands best friend. So the last has been beyond words. My husband who is a recovering alcoholic, started to drink again. I was diagnosed with even more autoimmune related diseases. I just keep piling them up. lol. Still struggling with our home insurance after two and a half years, the lawyer has already taken all of our replacement money for our goods we lost. (Forty years of memories). We have nothing.
But we are alive. We were saved from the fire. Miracle, yes I believe so.
I have had my share of miracles in my life I believe God has given us. I am not a showy religious person, never have been not comfortable sharing the word with others, or my feelings I have deep in my soul. But they are there.
The night of our fire, I went to bed, begging God for us not to lose our home to financial reasons, ( I was not working because of the illnesses I had, neurologist told me I would die if I kept working) so we were struggling so hard, to stay a float, so I went to bed Feb 23, 2012 begging God to help me come up with a way to save my beloved home. A few hours later, we were woke up with the miracle of the paper boys going by seeing the fire on the porch. They knocked, and knocked to get us to hear them, (we slept on a 2nd floor, and both are very hard of hearing) But the miracle is they woke us up and we did get out as the flames were licking behind us.
The feeling that God let me down was so heavy in my heart. He instead of helping me save my home he took it all away, everything in it, everything, nothing was saved, a 5,000 ft old Victorian home gone. I could not see beyond what I felt was a betrayal of my believes. I never prayed for myself, always for someone else. Never for me, as I felt I had strength for myself, but others needed my help praying for them. So the one of the few times I asked for myself, and family, I was betrayed. But how could I feel this way, I was alive, husband, was alive, dog, was alive. What is wrong with me?
So as the long job of documenting items contacting people, trying to find a place to live, I prayed once again, begging God to please keep my mom healthy, alive (she had dementia in the nursing home and had gone from good to bad, to good again several times). I begged him to not let her die now, I did not think I could handle one more thing.
Well after the fire, my husband was dx with macular degeneration at the age of 57 very young and started 4000.00 shots monthly for stopping the progression.
Jump ahead three weeks and I get a call from my moms nursing home, and they tell me my mom is serious, she could die anytime. What God? Did you leave me again? I wont be able to take this. But on I went and sat by my best friends bedside. I watched my mom decline for about 5 days. I was numb now. I was numb. Where are you God? What have we done? Yes my cup is half full, I am alive, but my god, what more can we go through.
So Mom passed away with me laying across her sobbing. A women so full of life robbed from her from the dementia, the fun loving, smart, women, mom now God took her body from me too.
I am numb, the Hashimoto's Encephalopathy had taken away almost all of my emotions, I was numb, could not feel deep in my soul anything, good, bad, happy, sad. Except for the day my mom died.
So we found a home to move into quick, bought a couch, and friends gave us chairs, and a kitchen table, along with a dining room table, my children brought us clothes to wear and we had moms funeral. With my brothers meeting here because I am the only one in town. I am numb. Please God let me get through this. Please God don't let me have a flare up, so I can not talk, or walk. Please God don't let me have a flare up of any of my other autoimmune disease that will hamper my ability to function during the funeral. Please God.
So then my husband started to drink more, I can not take it, making my stress worst, doctors are saying to leave because the stress is making my diseases progress faster. But I said words in front of God for Better or For Worst. So I need to help him in any way I can. But now I am afraid to pray for anything I am afraid if I pray I will get something worst then what I am dealing with already.
Well just this week have I felt all of a sudden that God loves me. He is there for me. He is watching over me, and my husband, children and grand daughter. He is there. He has a purpose for us. I need to believe again, I need not to be afraid of him. He is in my heart again where he belongs.
The Hashimoto's Encephalopathy causes me to forget to pray sometimes, memory problems is an issue with us sufferers. But God knows what I am thinking and when I say to someone I will pray for you I am even if I don't actually say a prayer he knows my intentions are good.
So God I love you and thank you for everything you have given us, even my autoimmune diseases, Bob's issues we are fighting through, the strength to get through everything that we have gone through. Thank you.
Thursday, July 31, 2014
IVIG Here I Come
Now whether this is a good sign or a scary sign but it only took days for me to be approved for the expensive treatment of IVIG. I could not believe it when the nurse called me to tell me. I was in Awe. And my Rheumy did it on his own with out the neuros help because they kept playing phone tag so just went ahead on his own.
I was first scheduled to have it this Friday Aug 1, but they called me back a few days later and said they would prefer to have me have my first treatment when my doctor is in the building. He is from Green Bay WI and comes here once a week. So I appreciate that they are being extra careful as I know you can have side affects. /They also said they feel it will take at least four hours maybe more so if I could come early in the morning, again no problem. I have researched IVIG a lot, and also on a Facebook web page for it so I have had a lot of information and help from people who have or are having the same treatment. Again thankful for these sites and these people. Nothing is better then to hear advice from the people who are getting the same thing.
This I hope will help me with my walking, and joint pain, memory, brain issues, weakness. I can not wait to see what it does. I will take a few months of treatment. So right in time for Christmas. lol
When I am having a good day I think, I don't need this treatment, but then like today and yesterday when I can barely move my legs and arms, so much weakness and pain, hip, back, it is bad. Fatigue is awful I think I can not wait.
We are starting to collect stories of HE patients for our Second edition of our book Understanding Hashimoto's Encephalopathy. We are also collecting them from the care givers as they have a very valuable story to tell also. They are the forgotten victims of chronic diseases.
Time to go no spoons today I am already on tomorrows supply not good.
P.S. If anyone who reads this has HE please feel free to submit your story we would love to add it to the book. Just let me know and I will tell you were to submit it to.
xoxoxo to all
I was first scheduled to have it this Friday Aug 1, but they called me back a few days later and said they would prefer to have me have my first treatment when my doctor is in the building. He is from Green Bay WI and comes here once a week. So I appreciate that they are being extra careful as I know you can have side affects. /They also said they feel it will take at least four hours maybe more so if I could come early in the morning, again no problem. I have researched IVIG a lot, and also on a Facebook web page for it so I have had a lot of information and help from people who have or are having the same treatment. Again thankful for these sites and these people. Nothing is better then to hear advice from the people who are getting the same thing.
This I hope will help me with my walking, and joint pain, memory, brain issues, weakness. I can not wait to see what it does. I will take a few months of treatment. So right in time for Christmas. lol
When I am having a good day I think, I don't need this treatment, but then like today and yesterday when I can barely move my legs and arms, so much weakness and pain, hip, back, it is bad. Fatigue is awful I think I can not wait.
We are starting to collect stories of HE patients for our Second edition of our book Understanding Hashimoto's Encephalopathy. We are also collecting them from the care givers as they have a very valuable story to tell also. They are the forgotten victims of chronic diseases.
Time to go no spoons today I am already on tomorrows supply not good.
P.S. If anyone who reads this has HE please feel free to submit your story we would love to add it to the book. Just let me know and I will tell you were to submit it to.
xoxoxo to all
Monday, July 21, 2014
IVIG? We will see
Update on it all. Last I wrote I was or had gone to La Crosse Wis for a neurologist appointment. This went well, she ordered an EEG and a spinal tap. The EEG took for every to come back because of her old clinic, does not know how to play nice with others. This is another story for another time. But the two tests came back, ok, but the tremors and the jerking she is thinking is coming from the small fiber neuropathy. Being made worst from the stress I am in at home. (I believe this to be true) but to hard to control right now. My Rheumy still wants and insists on the IVIG, and my Neuro is going to help him to try to convince the insurance companys that I need it. He did say if refused he will have to start me on one of the big gun meds which scares me more then the IVIG does. Nothing really will help with the Sjogrens but I am thinking that in his mind there is either lupus or scleroderma still hanging over me, and with the amount of autoimmune diseases that I keep getting, he feels it is time to use something to hopefully stop them. The IVIG would also help the neuromuscular problem I have the autoimmune colitis, and the HE and also the progression of the small fiber neuropathy. So I pray it is approved, yet I am afraid if it is. But I have heard people say that are getting it, that they can walk better, so I am crossing my fingers, to walk again is a dream.
My Gerd has been so bad lately, a flair or what ever you want to say. WOW been eating tums like they are candy. They help until I eat something else. Stress, stress, stress. Now Cat scan and echo cardiogram next week for the pulmonologist. I do not expect anything negative with this, but with the connective tissue diseases they need to check me out to make sure things are not spreading.
So happy to say our book Understanding Hashimoto's Encephalopathy is doing so well, getting the word out as we planned. Just such a rewarding feeling to know that we can help others even being disabled ourselves. Hopefully nobody else will feel as lost as we did when we were first dx. There is information now out there for people.
We are making a documentary of the book and how it came about to be, about stories of people who have been dx with HE. Hopefully this will also help educate people about this rare disease.
My Gerd has been so bad lately, a flair or what ever you want to say. WOW been eating tums like they are candy. They help until I eat something else. Stress, stress, stress. Now Cat scan and echo cardiogram next week for the pulmonologist. I do not expect anything negative with this, but with the connective tissue diseases they need to check me out to make sure things are not spreading.
So happy to say our book Understanding Hashimoto's Encephalopathy is doing so well, getting the word out as we planned. Just such a rewarding feeling to know that we can help others even being disabled ourselves. Hopefully nobody else will feel as lost as we did when we were first dx. There is information now out there for people.
We are making a documentary of the book and how it came about to be, about stories of people who have been dx with HE. Hopefully this will also help educate people about this rare disease.
Sunday, June 29, 2014
Autioimmune Diseases and Jack Ass Doctors
Autoimmune diseases is one thing I can not control. The myositis, the sjorgens, Hashimotos Encephalopathy, Hashimotos Thyroiditis, Autoimmune colitis, Raynaud's disease, etc. For which brought on small and large fiber neuropathy. And not to mention the lupus and scleroderma that hangs over my head.
But now doctors I can control. I can not believe I have ran into a bunch of petty, self serving neurologists. I was told one time from a RN that neurologists are a different breed and she is right on this account. My regular Neuro moved in Dec to a Clinic/Hosptital 5 hours away. I really cared for her. Not only is she good she is nice and caring. Well as I went to the normal clinic, I was treated strangley thought it was my own imagination playing over time. Well decided to take a long trip to see the neuro I trust with my life, as I am having such odd new worrisome symptoms. So on I went, and of course I still love her, she ordered a EEG, Spinal, blood work, close to home, she said to go her old clinic and have the EEG done, for which I did, and again was treated strangley. My Doctor kept waiting for the results, (been 2 weeks) so I emailed the clinic and explained that I will need a local doctor as well as Dr. Santillan, and then called to set an appointment. WELL this is what I got. I was told that I can not see both, it has to be their clinic, or drive to the old neuro Dr. Santillan but I can not have it both ways. I was so furious, and not feeling well, started to cry(for which I hate myself for) lol I hate to be weak, but I was angry, I cry when angry. I said that is fine then take me off your patient list I will see Dr. Santillan instead, five hours away. But now they still have the EEG results that I need. So now Monday I will have to call and make a stink and demand records. I can not believe this my doctor was well loved at her old clinic, yet they are being petty, and not willing to work with her as a team for my well being. Like she said in her last report that she left for next attending doctor, that I am a complicated case. Nothing to be proud of, but I am. I hate to go through this Monday, as I do not need anymore stress in my life. I am in a flare right now, colitis is flaring, my legs are bad, my gate is awful, balance is awful, walking into walls, and I have to go for the spinal tap Monday afternoon, YEAH. Did I mention I hate spinal taps. lol. Well anyway history for old clinic, they sure do not take their patients well being in mind over their stupid pride.
Now good things. :) Saturday in Chicago, I met with several other Hashimotos Encephalopathy patients that I have interacted with daily for a few years on facebook but now got to meet face to face. It was so nice to see them in the flesh,. We then had my son who is a film maker, come and do a documentary on the book, and the authors, (Nicola and myself) and a few of the HE sufferers. He and a friend who is a director worked for six hours straight interviewing and filming,. It was amazing. We are hoping to use this as an educational piece as well as pieces going towards our longer documentary that will be coming up. It went so well, so excited.
Well time to go, been so tired again lately. No amount of sleep is enough.
But now doctors I can control. I can not believe I have ran into a bunch of petty, self serving neurologists. I was told one time from a RN that neurologists are a different breed and she is right on this account. My regular Neuro moved in Dec to a Clinic/Hosptital 5 hours away. I really cared for her. Not only is she good she is nice and caring. Well as I went to the normal clinic, I was treated strangley thought it was my own imagination playing over time. Well decided to take a long trip to see the neuro I trust with my life, as I am having such odd new worrisome symptoms. So on I went, and of course I still love her, she ordered a EEG, Spinal, blood work, close to home, she said to go her old clinic and have the EEG done, for which I did, and again was treated strangley. My Doctor kept waiting for the results, (been 2 weeks) so I emailed the clinic and explained that I will need a local doctor as well as Dr. Santillan, and then called to set an appointment. WELL this is what I got. I was told that I can not see both, it has to be their clinic, or drive to the old neuro Dr. Santillan but I can not have it both ways. I was so furious, and not feeling well, started to cry(for which I hate myself for) lol I hate to be weak, but I was angry, I cry when angry. I said that is fine then take me off your patient list I will see Dr. Santillan instead, five hours away. But now they still have the EEG results that I need. So now Monday I will have to call and make a stink and demand records. I can not believe this my doctor was well loved at her old clinic, yet they are being petty, and not willing to work with her as a team for my well being. Like she said in her last report that she left for next attending doctor, that I am a complicated case. Nothing to be proud of, but I am. I hate to go through this Monday, as I do not need anymore stress in my life. I am in a flare right now, colitis is flaring, my legs are bad, my gate is awful, balance is awful, walking into walls, and I have to go for the spinal tap Monday afternoon, YEAH. Did I mention I hate spinal taps. lol. Well anyway history for old clinic, they sure do not take their patients well being in mind over their stupid pride.
Now good things. :) Saturday in Chicago, I met with several other Hashimotos Encephalopathy patients that I have interacted with daily for a few years on facebook but now got to meet face to face. It was so nice to see them in the flesh,. We then had my son who is a film maker, come and do a documentary on the book, and the authors, (Nicola and myself) and a few of the HE sufferers. He and a friend who is a director worked for six hours straight interviewing and filming,. It was amazing. We are hoping to use this as an educational piece as well as pieces going towards our longer documentary that will be coming up. It went so well, so excited.
Well time to go, been so tired again lately. No amount of sleep is enough.
Sunday, June 15, 2014
More Tests Here I Come
June 12, 2014 I met with my neurologist that I went 5 hours to go see. (one way that is) lol. And I was not disappointed at all, so glad I went. She makes me feel like I am in good, educated hands.
She feels that the sjrogrens could be crossing over the central nervous system and or the brain for which is causing me the bad tremors and jerking that I have been getting. She listens, I love this about her. She asked me to send copies of my records of Dr. Hermitanos my rheumy to her, and then I have blood work this week, and a sleep deprived eeg Tues to be done in Green Bay. I was advised to get a neuro I can work with in between appointments with her, for which will be every six months, or more if needed. But this way the one I have here she can work through also. So I have to swallow my tongue and go back to the clinic, and get a neuro who wont mind working with Dr. Santillian. They all know her and like her so I hope this wont be hard to do. She also agreed not to switch back and forth between two neuros with all the issues I have. She could not believe they even suggested that for me. Also may want another spinal tap, for which I am holding my breath, I hate them, but if I have too I have too. She mentioned epilepsy, MS, etc. I should bring my tape recorder so I remember it all. I also told her about the tremors in my tongue, she did not look, I think she knows me enough by now to know when I tell her something, it is something that is not to be taken lightly, because I never go in complaining about this and that. She also told me I have not just small fiber neuropathy but also large fiber neuropathy for which I was told is very rare too. So I guess I am full of rare stuff, lol, I wish If I was so rare I was worth something, right, like an old book? lol. Oh well.
The tooth came out on Tuesday and still hurts, for which I don't think it should, but it does, not terrible, but just there.
Dr. Santillan is going to try for the IVIG I believe but she said it is getting harder and harder to get approval from insurance companies. So we will see what happens if it is meant to be it will be.
Like a friend of mind says who has HE it is in God's Hands.
Katie and Bill came to stay for a few days this past week which was such a great visit, Meg and Sean came down and Nick, I am so lucky to have such wonderful Children. I could not ask for anything else in life. So very lucky. Scott your included too as is Amy and my Payger, lol.
Happy Fathers Day to all who are fathers in anyway, stepfather, friends, mentor, foster how ever you father, have a great day.
She feels that the sjrogrens could be crossing over the central nervous system and or the brain for which is causing me the bad tremors and jerking that I have been getting. She listens, I love this about her. She asked me to send copies of my records of Dr. Hermitanos my rheumy to her, and then I have blood work this week, and a sleep deprived eeg Tues to be done in Green Bay. I was advised to get a neuro I can work with in between appointments with her, for which will be every six months, or more if needed. But this way the one I have here she can work through also. So I have to swallow my tongue and go back to the clinic, and get a neuro who wont mind working with Dr. Santillian. They all know her and like her so I hope this wont be hard to do. She also agreed not to switch back and forth between two neuros with all the issues I have. She could not believe they even suggested that for me. Also may want another spinal tap, for which I am holding my breath, I hate them, but if I have too I have too. She mentioned epilepsy, MS, etc. I should bring my tape recorder so I remember it all. I also told her about the tremors in my tongue, she did not look, I think she knows me enough by now to know when I tell her something, it is something that is not to be taken lightly, because I never go in complaining about this and that. She also told me I have not just small fiber neuropathy but also large fiber neuropathy for which I was told is very rare too. So I guess I am full of rare stuff, lol, I wish If I was so rare I was worth something, right, like an old book? lol. Oh well.
The tooth came out on Tuesday and still hurts, for which I don't think it should, but it does, not terrible, but just there.
Dr. Santillan is going to try for the IVIG I believe but she said it is getting harder and harder to get approval from insurance companies. So we will see what happens if it is meant to be it will be.
Like a friend of mind says who has HE it is in God's Hands.
Katie and Bill came to stay for a few days this past week which was such a great visit, Meg and Sean came down and Nick, I am so lucky to have such wonderful Children. I could not ask for anything else in life. So very lucky. Scott your included too as is Amy and my Payger, lol.
Happy Fathers Day to all who are fathers in anyway, stepfather, friends, mentor, foster how ever you father, have a great day.
Tuesday, June 10, 2014
Trip to Old Neuro
Well tomorrow I leave for a five hour trip to see my old Neuro who left the area and moved on to Gunderson Lutheran Neuroscience Center. I did a lot of research on the teaching hospital and I am very impressed and encouraged in what I have seen. I already love my neurologist Dr. Santillan, it is just hard to get to a place so far away when I am not allowed to drive except for local, and my husband has macular degeneration, so I have to depend on my great friends that I have. And I do I have great friends, Thank God. I don't know what I would do with out them. So a great long time friend is driving me and we will stay over night as my appointment is for 8:00 in the morning.
I am hoping Dr. Santillan can shed some light on some new and worry some symptoms of tremors, Tremors that even affect my tongue. Very weird. My arms will tremor so bad, I can not control my fingers to type, It will last for quite a long time, I have to just have to sit because my legs will feel like they will give in. But my tongue is all the time. I did a little research on this and of course it can be symptoms of many things such as ALS for which I am sure it is not, MS. MG. etc, but it could also be my hashimoto's encephalopathy, or small fiber neuropathy. So I understand why my rheumy wants me to start IVIG. But it would have to come through the neurologists office as he has told me, because of the severity of those diseases would help to be approved.
As luck would have it for me, lol, I broke a tooth Fri night, sooooo went all weekend with a broken hurting tooth and mouth. Had the tooth pulled today, so hopefully it wont be too painful when I go tomorrow. The dentist did say because of the Sjrogrens I have it will make my teeth and especially my gums deteriorate easier so to be aware. Gave me special toothpaste for gums. So this was new, I read where you have to be careful with your mouth but did not realize your gums. lol, Really dumb, right, lol it is part of my mouth. lol. Well I will say between the scar tissue yet from the lip biopsy's and the tooth being pulled, my mouth is one mess. It is bad when it hurts to even drink water.
I will be back to tell you about my appointment. I hope I have good news.
Have a safe and enjoyable summer.
Susie
I am hoping Dr. Santillan can shed some light on some new and worry some symptoms of tremors, Tremors that even affect my tongue. Very weird. My arms will tremor so bad, I can not control my fingers to type, It will last for quite a long time, I have to just have to sit because my legs will feel like they will give in. But my tongue is all the time. I did a little research on this and of course it can be symptoms of many things such as ALS for which I am sure it is not, MS. MG. etc, but it could also be my hashimoto's encephalopathy, or small fiber neuropathy. So I understand why my rheumy wants me to start IVIG. But it would have to come through the neurologists office as he has told me, because of the severity of those diseases would help to be approved.
As luck would have it for me, lol, I broke a tooth Fri night, sooooo went all weekend with a broken hurting tooth and mouth. Had the tooth pulled today, so hopefully it wont be too painful when I go tomorrow. The dentist did say because of the Sjrogrens I have it will make my teeth and especially my gums deteriorate easier so to be aware. Gave me special toothpaste for gums. So this was new, I read where you have to be careful with your mouth but did not realize your gums. lol, Really dumb, right, lol it is part of my mouth. lol. Well I will say between the scar tissue yet from the lip biopsy's and the tooth being pulled, my mouth is one mess. It is bad when it hurts to even drink water.
I will be back to tell you about my appointment. I hope I have good news.
Have a safe and enjoyable summer.
Susie
Thursday, May 8, 2014
Just Think Before You Speak
There are so many articles out there with advice on how to treat a friend that you know who is suffering with a Chronic illness, yet there are still such ignorant responses or statements made. It hurts the suffer and they have enough to deal with just being sick, and they are sick of being sick. They would love to be outside playing baseball, walking their dogs, taking trips, visiting family and friends. Sometimes, in fact a lot of times it is hard for them to even go out to eat they maybe to tired to clean themselves up, or to stay awake long enough because they are too tired. Sometimes they find it hard to even have company visit them, or there is an effort trying to talk or hold a conversation. They want this, but it is hard. It is a lonely job being sick all the time. It is an effort every day for the chronically ill to shower and get dress, sometimes it is an effort to get out of bed in the morning. The chronically ill are constantly pushing themselves. It would be like you who are healthy trying to walk with 300 pound bricks tied to each foot. And if your brain is affected by the chronic illness, it is worst yet as you have to think through each movement you make with that 300 pound brick. Each word coming out of your mouth is an effort for you. Sometimes standing still is an effort for your brain as it wants to tip you sideways or backwards so you fall. It is all an effort.
So when people say to the chronically ill
You would feel better getting some exercise
If you only lost weight
You need to get out more
You need to have some company and enjoy life a little bit
You don't look sick
You are out and about so you can not be that sick
Ah come on, you can do this, come out with us
If I were you I would stop taking all those dam pills they are making things worst
There are so many more, but I think this must give a pretty good idea. Just think before you offer advice. Think how it would be carrying that 300 pound weight on each foot all day long, and then having your brain affected sort of like being hooked up to one leg with the 300 pound weight. Just think for a min. dragging your body and your brain and think of how tired you would be and discouraged. Just think.
So when people say to the chronically ill
You would feel better getting some exercise
If you only lost weight
You need to get out more
You need to have some company and enjoy life a little bit
You don't look sick
You are out and about so you can not be that sick
Ah come on, you can do this, come out with us
If I were you I would stop taking all those dam pills they are making things worst
There are so many more, but I think this must give a pretty good idea. Just think before you offer advice. Think how it would be carrying that 300 pound weight on each foot all day long, and then having your brain affected sort of like being hooked up to one leg with the 300 pound weight. Just think for a min. dragging your body and your brain and think of how tired you would be and discouraged. Just think.
Happy Mothers Day
It is another nice spring day here in Michigan, NOT lol. It was suppose to be the first spring day of 70 degrees and it is about 50 out. Next week around 30. What a bummer. I have a small green house I have been waiting to plant in, but by the time I get to do that, the plants will never be big enough to plant in the ground. It is a small green house my husband bought me for my birthday in Feb it fits on our back porch which gets a lot of sun. Yet it is covered that is good for me. I had a huge one at the home we had that burned down a couple of years ago. But with the progression of my health issues this is good enough and will work just fine. Being allergic to the sun, the roof over the green house helps me avoid more sun this way too. Well I think next week, come hell or high water I will be out there one way or another. Maybe a heater will help lol.
Mothers day is Sunday, boy how I miss my mom. It has been two years and it is worst then it was in the beginning and it is suppose to be getting better. But with the house burning only weeks before her death, and then her passing, it was such a blur for so long. I find I am now just moorning things I had not had time too or the mine to before this. It is a scramble of life's trials and errors in the past ten years. But I am still here and not doing to bad considering all the health issues. I love you mom and wish you were here with me. I know you are still looking down on me and guiding me and giving me strength. I so love you and miss your presence. Happy Mothers Day Mom.
Well reading some articles I found out that there are even a couple more drugs I take that makes a person gain weight. YIPPIE. No wonder I can not win. I would love to just stop all of them, (like an aunt told me I should) so I could lose weight, but I know I would more than likely die. So choice is weight gain or not be here. Lets see here, I think I want to live. But even so, Carbamazepine can cause weight I did not know this for the last four years I have been taking it, or the Imuran I am on, along of course with the others. Those I knew of. But these two, Gee wiz.
So the biopsy site is finally healing, but feels so weird in my mouth when I touch it with my tongue, or suck in air, weird, plus my mouth being so dry all the time, makes it feel even weirder. But I don't cringe in pain when I try to eat something so that is good, only took two weeks. Just like the doctor said. I don't know why the dx of this autoimmune disease has sort of attacked my psyche. But it has, I always just sort of shrugged all the other stuff off a shoulder or two, and went on my merry way, but for some reason it is hanging heavy on me. It maybe the fact that in the back of my mind I keep thinking of what next are they going to find? Or maybe because my endurance is less and less, the disease progressing? I try, I really do, I do my own housework, sometimes something extra, but at night sometimes it is such an effort to make supper I am ok to start in the afternoon ahead, but if it is 5 or so, I am done. And I love to cook and bake. It is an effort. If I go to the grocery store as I did a couple of days ago, (by the way someone I know made the comment to me, that I must not be that sick since I was out shopping) (smile) but anyway, I can hardly put them away, never haul them all in, my legs feel like they will give out hanging onto the cart, I have to sit when I get home before I start the putting away process. And then the next couple of days I am out of commission. Not too much energy. My legs are weak, like it is such an effort to walk, I can hardly lift a leg to go up a curb. Just happy I start back on my (body fattening) Imuran again last night. Had to stop because of the biopsy, killing me, but now back on, and hopefully will start to feel more energetic again, or just not so dam tired.
Love you all, and to those of you that are Mothers (of any kind) Happy Mothers Day.
Mothers day is Sunday, boy how I miss my mom. It has been two years and it is worst then it was in the beginning and it is suppose to be getting better. But with the house burning only weeks before her death, and then her passing, it was such a blur for so long. I find I am now just moorning things I had not had time too or the mine to before this. It is a scramble of life's trials and errors in the past ten years. But I am still here and not doing to bad considering all the health issues. I love you mom and wish you were here with me. I know you are still looking down on me and guiding me and giving me strength. I so love you and miss your presence. Happy Mothers Day Mom.
Well reading some articles I found out that there are even a couple more drugs I take that makes a person gain weight. YIPPIE. No wonder I can not win. I would love to just stop all of them, (like an aunt told me I should) so I could lose weight, but I know I would more than likely die. So choice is weight gain or not be here. Lets see here, I think I want to live. But even so, Carbamazepine can cause weight I did not know this for the last four years I have been taking it, or the Imuran I am on, along of course with the others. Those I knew of. But these two, Gee wiz.
So the biopsy site is finally healing, but feels so weird in my mouth when I touch it with my tongue, or suck in air, weird, plus my mouth being so dry all the time, makes it feel even weirder. But I don't cringe in pain when I try to eat something so that is good, only took two weeks. Just like the doctor said. I don't know why the dx of this autoimmune disease has sort of attacked my psyche. But it has, I always just sort of shrugged all the other stuff off a shoulder or two, and went on my merry way, but for some reason it is hanging heavy on me. It maybe the fact that in the back of my mind I keep thinking of what next are they going to find? Or maybe because my endurance is less and less, the disease progressing? I try, I really do, I do my own housework, sometimes something extra, but at night sometimes it is such an effort to make supper I am ok to start in the afternoon ahead, but if it is 5 or so, I am done. And I love to cook and bake. It is an effort. If I go to the grocery store as I did a couple of days ago, (by the way someone I know made the comment to me, that I must not be that sick since I was out shopping) (smile) but anyway, I can hardly put them away, never haul them all in, my legs feel like they will give out hanging onto the cart, I have to sit when I get home before I start the putting away process. And then the next couple of days I am out of commission. Not too much energy. My legs are weak, like it is such an effort to walk, I can hardly lift a leg to go up a curb. Just happy I start back on my (body fattening) Imuran again last night. Had to stop because of the biopsy, killing me, but now back on, and hopefully will start to feel more energetic again, or just not so dam tired.
Love you all, and to those of you that are Mothers (of any kind) Happy Mothers Day.
Sunday, May 4, 2014
Autoimmune Queen, My New Title.
Well it is Sjrogrens it came back positive. The rheumy said with the other symptoms and the biopsy results it is for sure an another autoimmune disease. Yippie. But he did say, as I down played the symptoms and the disease route it can take, that it can be serious, it is systematic, it is a connective tissue disease, it can affect your inner organs, your peripheral nervous system, your central nervous system. So I guess I will keep this in mind and not think that it is not that big of deal. lol.
The surgeon did say when he looked at my lip, like it was doing ok, but the rheumy when I told him it hurt like hell, he laughed and said it will for a while because you have small fiber neuropathy, well someone should have told me that before, lol, I am not sure I would have done it. the pain now and it has been 10 days, It is like someone is taking a knife and slicing open or zapping with an electrical probe into the lower lip. When it moves a certain way. I am sure it is a nerve that is affected. So that is good for another Yippie. lol.
Cant start the Imuran for another week, want the biopsy site to heal more before I go on the immune suppressants. I understand that, to easy to catch a super infection from the surgery site if I am on the suppressants. But I will be happy to start again, I am so tired, I started to think about this yesterday. Why wouldn't I be tired, I have how many autoimmune diseases that all cause fatigue and I am on no meds for them. So I am sure there all running rapid in my body causing among other things, the fatigue. The HE is causing neurological problems, the myositis is causing my legs to be super weak and hard to walk. Sjrogrens mouth super dry, sinus issues, plus the fatigue, plus the rest of the nice little things going on like the small fiber neuropathy.
Ok enough whining. Now for the good stuff, my grandbaby, oh how I love her, she is walking and it is nothing like watching a toddler start to walk, so funny, and her hair is so red, I mean red she sure gets that from our side, and my dads side of the family. I love it. She is so sweet and is the sunshine of the day and night for me.
Her mom and Dad are building a new home this summer so happy for them. I remember those days with my kids being little and all the exciting things happening. Best time of ones life. I am so thankful for the days I had with my children and family back then.
Our insurance is starting to get to the nitty gritty of our home burning down (2 years ago) actually longer then that, but hopefully we can finish this up and resume a half way normal life again.
love to all
Susie
The surgeon did say when he looked at my lip, like it was doing ok, but the rheumy when I told him it hurt like hell, he laughed and said it will for a while because you have small fiber neuropathy, well someone should have told me that before, lol, I am not sure I would have done it. the pain now and it has been 10 days, It is like someone is taking a knife and slicing open or zapping with an electrical probe into the lower lip. When it moves a certain way. I am sure it is a nerve that is affected. So that is good for another Yippie. lol.
Cant start the Imuran for another week, want the biopsy site to heal more before I go on the immune suppressants. I understand that, to easy to catch a super infection from the surgery site if I am on the suppressants. But I will be happy to start again, I am so tired, I started to think about this yesterday. Why wouldn't I be tired, I have how many autoimmune diseases that all cause fatigue and I am on no meds for them. So I am sure there all running rapid in my body causing among other things, the fatigue. The HE is causing neurological problems, the myositis is causing my legs to be super weak and hard to walk. Sjrogrens mouth super dry, sinus issues, plus the fatigue, plus the rest of the nice little things going on like the small fiber neuropathy.
Ok enough whining. Now for the good stuff, my grandbaby, oh how I love her, she is walking and it is nothing like watching a toddler start to walk, so funny, and her hair is so red, I mean red she sure gets that from our side, and my dads side of the family. I love it. She is so sweet and is the sunshine of the day and night for me.
Her mom and Dad are building a new home this summer so happy for them. I remember those days with my kids being little and all the exciting things happening. Best time of ones life. I am so thankful for the days I had with my children and family back then.
Our insurance is starting to get to the nitty gritty of our home burning down (2 years ago) actually longer then that, but hopefully we can finish this up and resume a half way normal life again.
love to all
Susie
Friday, April 25, 2014
Biopsy done now wait for results
Well I had my lip biopsy done yesterday. Glad it is done. My lip looks like Goldie Hawn in one of he movies were she was getting botox injections and the lips kept getting bigger, and bigger ha,ha. Not a -pretty picture. I will say though everything went well, The nurses, the doctor, the receptionist they all were outstanding,. I can not say enough of how well I was treated from all. So very impressed. It was more complicated then I was thinking, a complete surgery set up, but it is done. Now I will find out the results next Tues when I go for the follow up. I will never go to anyone else for ent issues for which I have had in the past. Now if it comes back positive it will answer quite a few questions if it is negative well then it is one to cross off of the few uctd that I might have, it will narrow that down a little.
So been eating popsicles as they freeze the lip and makes it feel better, spent the day in bed yesterday sleeping off the pain meds, I also nausea but today is better thank goodness still have to take it easy, and I have. But the eating is still hard, but of course I find ways lol. Always find ways lol.
Will keep all posted on the results of one more autoimmune diagnosis. drum roll lol, lol. One has to laugh right?
So been eating popsicles as they freeze the lip and makes it feel better, spent the day in bed yesterday sleeping off the pain meds, I also nausea but today is better thank goodness still have to take it easy, and I have. But the eating is still hard, but of course I find ways lol. Always find ways lol.
Will keep all posted on the results of one more autoimmune diagnosis. drum roll lol, lol. One has to laugh right?
Monday, April 14, 2014
STILL WAITING
I can not believe I have not been back on in such a long time. That is a shame. No excuses for me. Just to update as the title says still waiting. My lip biopsy will be the week after Easter. I met with the surgeon and he was a very nice doctor, he said he will take four different spots of saliva cells, so four different incisions on the inside of my bottom lip. This will be done as an out patient under general anesthesia which shocked me as I thought it was just an office procedure. Surprise. lol So now I have to go and get a pre op physical first. So much for something I thought would be so simple, lol . I guess when it comes to my health there is no simple, lol. OH well.
I have to say he had this very nice intern with him as he said it was his last week he was going to be a full fledged doctor next week and asked if I minded if he took my health history, so of course I said I did not mind, but when he was left with me, I said to the poor guy, so sorry you really do not want to be stuck doing mine, lol, it is complicated. He just smiled, but eyes got bigger as I started naming things in the autoimmune dept that I had, he he.
I am also waiting for one more test to come back for the MG test called anti-musk antibodies. We will see, a friend of mind who has MG told me to stick my tongue out in a mirror and see if is has tremors in it, well of course I felt silly, but did it anyway, and oh my gosh, it is bad, now I think people who do not have anything wrong might have it too, but I videoed taped it, Yes I am beginning to be weird and taped the thing shaking and wobbling, and doing its own thing. I sent it to my friend with MG and she said, YUP that is called an MG tongue. So not that I believe this but I will show my neuro.
Speaking of neuros, well I have decided that I will not stay where I have two different neuros bounce me back and forth, my brain can not handle that. I need one, and only one that will remember what I am telling them, not notes from one apt to the next between two diff docs who will have two diff opinions I am sure on how to treat me, no thanks. So I made an appointment with my favorite Neurologist who moved 4 hours away. I decided if I have to crawl there I will get there. She can work with my rheumy here as that is what they have been doing anyway. I am sorry but she is the only one I feel comfortable with. So road trip lol, in June. By then I should have all tests back for the anti musk and the biopsy.
Well I can say one thing for sure, when the doctors would ask if the Imuran was working I was always like, I don't know, maybe, dah, but I can tell you now after being off of it for a month it did. I know my swallowing, headaches, the memory is getting worst again, my concentration really sucks, which in turns make the small fiber neuropathy worst. It is like playing ring around the rosy. We all fall down, that is me if they don't get the biopsy done and put me back on Imuran or IVIG.
I have been working hard on marketing our book on Understanding Hashimoto's Encephalopathy.
I have written tv stations that I think there maybe a chance in hell that they maybe interested as it is so rare, but one tv station did say (in Texas) that because it is so rare it would draw such a small audience, I understand this thinking, buttttt it is so rare because it is so underdiagnosed so again it is a circle we keep going around. But I will keep plugging away when I can. It is not the fact that we are promoting the book to get sales as we are promoting the book for awareness. So many people suffer so unnecessary because doctors are afraid to dx a rare disease. Or push the patients off to someone else because they do not want to deal with it. I feel so sorry for so many patients going through the diagnostic hell of being diagnosed, or at least listened too, It breaks my heart. I also think that it will be found to be a disease that runs in families. I hope not for my childrens sake, but I do think in years to come this will be a discovery for HE.
Well for now see ya later, I will be back in a day or two no long breaks any more. No more excuses, lol, I have become good at. lol.
Susie
I have to say he had this very nice intern with him as he said it was his last week he was going to be a full fledged doctor next week and asked if I minded if he took my health history, so of course I said I did not mind, but when he was left with me, I said to the poor guy, so sorry you really do not want to be stuck doing mine, lol, it is complicated. He just smiled, but eyes got bigger as I started naming things in the autoimmune dept that I had, he he.
I am also waiting for one more test to come back for the MG test called anti-musk antibodies. We will see, a friend of mind who has MG told me to stick my tongue out in a mirror and see if is has tremors in it, well of course I felt silly, but did it anyway, and oh my gosh, it is bad, now I think people who do not have anything wrong might have it too, but I videoed taped it, Yes I am beginning to be weird and taped the thing shaking and wobbling, and doing its own thing. I sent it to my friend with MG and she said, YUP that is called an MG tongue. So not that I believe this but I will show my neuro.
Speaking of neuros, well I have decided that I will not stay where I have two different neuros bounce me back and forth, my brain can not handle that. I need one, and only one that will remember what I am telling them, not notes from one apt to the next between two diff docs who will have two diff opinions I am sure on how to treat me, no thanks. So I made an appointment with my favorite Neurologist who moved 4 hours away. I decided if I have to crawl there I will get there. She can work with my rheumy here as that is what they have been doing anyway. I am sorry but she is the only one I feel comfortable with. So road trip lol, in June. By then I should have all tests back for the anti musk and the biopsy.
Well I can say one thing for sure, when the doctors would ask if the Imuran was working I was always like, I don't know, maybe, dah, but I can tell you now after being off of it for a month it did. I know my swallowing, headaches, the memory is getting worst again, my concentration really sucks, which in turns make the small fiber neuropathy worst. It is like playing ring around the rosy. We all fall down, that is me if they don't get the biopsy done and put me back on Imuran or IVIG.
I have been working hard on marketing our book on Understanding Hashimoto's Encephalopathy.
I have written tv stations that I think there maybe a chance in hell that they maybe interested as it is so rare, but one tv station did say (in Texas) that because it is so rare it would draw such a small audience, I understand this thinking, buttttt it is so rare because it is so underdiagnosed so again it is a circle we keep going around. But I will keep plugging away when I can. It is not the fact that we are promoting the book to get sales as we are promoting the book for awareness. So many people suffer so unnecessary because doctors are afraid to dx a rare disease. Or push the patients off to someone else because they do not want to deal with it. I feel so sorry for so many patients going through the diagnostic hell of being diagnosed, or at least listened too, It breaks my heart. I also think that it will be found to be a disease that runs in families. I hope not for my childrens sake, but I do think in years to come this will be a discovery for HE.
Well for now see ya later, I will be back in a day or two no long breaks any more. No more excuses, lol, I have become good at. lol.
Susie
Thursday, March 20, 2014
Tired Of Waiting: Blood Tests Then Wait, Wait, Wait
So those of you that have read the last few posts know that I have been waiting to see my new neurologist, this happened this past Tuesday March, 18, 2014. I told her my concerns, my trembling inside and out, shaking the jerking getting worst, my symptoms getting worst since the Imuran has been discontinued. I also told her and showed her my symptoms matching the MG list and said I have never done this before but this describes me to a T. Perfect description to what I experience with my muscle weakness and pain. So she agreed to do blood work for the MG, which is MG test and a anti-musk blood test also. For the He symptoms she had me get again the thyroid antibodies tests, including the tpo anti-thyroid-peroxidase antibodies and the thyroglobulin antibodies and the cpk test for muscle inflammation. The poor girl at the clinic drawing blood had never done any of these. She kept on saying she was so sorry for taking so long, and I kept reassuring her it was find. So my thoughts are on these tests, is that I have only been off Imuran for two weeks, after being on it for four years how is this going to come out with an accurate result. We will see.
I am looking into finding a neuromuscular Md as many are telling me to do so. My muscle issues is nothing to screw around with. All the neuros I have seen have not been specializing in muscle part of the neurology. I also know I need a special kind of emg for diagnosing MG. One where they repeatedly zap the same muscle which makes sense, since that is what happens to mine, they tire out, run out of energy. So that is why I am looking, found one in Madison, and one in Milwaukee at Froedardt. So with Bob and I not driving distances again I would have to depend on others I hate that
Then as I was leaving my appointment with the new neuro appointment, she did say to me that she wanted me to see someone else from now on, in two months, the other will trade off with me to another neuro in the same clinic. I am not sure I like this set up. So another concern to me. I do not feel she felt she was able to help me, I was over her head.
I also told her I want IVIG and Dr. Santillan had recommended that for me next and she said we will wait to see the blood results. I am not happy about that either as I wanted to get this all started, find out if I would qualify for it or not,. I told her the rheumatologist though I was on it all ready wants me off of the Imuran, she said why, we have had people on it for years. So I hate going to new doctors I just hate it. With the autoimmune problems that I have I do not need someone to screw with me. So now I wait, again for the blood work for which I am sure will be negative because of the autoimmune suppressants I have been on. .
I have noticed that I am losing my voice again, being hoarse as it was a few years ago before the Imuran was working, my swallowing is becoming an issue again too. So I guess the Imuran was working.
I have my first appointment made for the lip biopsy, I really do not get why I have to have an appointment first before they do it, just do it right. I know what it is. So that will be another wait too.
Oh well wait, wait, wait, Not that I am so busy, but I hate waiting.
Well will keep this updated.
I am looking into finding a neuromuscular Md as many are telling me to do so. My muscle issues is nothing to screw around with. All the neuros I have seen have not been specializing in muscle part of the neurology. I also know I need a special kind of emg for diagnosing MG. One where they repeatedly zap the same muscle which makes sense, since that is what happens to mine, they tire out, run out of energy. So that is why I am looking, found one in Madison, and one in Milwaukee at Froedardt. So with Bob and I not driving distances again I would have to depend on others I hate that
Then as I was leaving my appointment with the new neuro appointment, she did say to me that she wanted me to see someone else from now on, in two months, the other will trade off with me to another neuro in the same clinic. I am not sure I like this set up. So another concern to me. I do not feel she felt she was able to help me, I was over her head.
I also told her I want IVIG and Dr. Santillan had recommended that for me next and she said we will wait to see the blood results. I am not happy about that either as I wanted to get this all started, find out if I would qualify for it or not,. I told her the rheumatologist though I was on it all ready wants me off of the Imuran, she said why, we have had people on it for years. So I hate going to new doctors I just hate it. With the autoimmune problems that I have I do not need someone to screw with me. So now I wait, again for the blood work for which I am sure will be negative because of the autoimmune suppressants I have been on. .
I have noticed that I am losing my voice again, being hoarse as it was a few years ago before the Imuran was working, my swallowing is becoming an issue again too. So I guess the Imuran was working.
I have my first appointment made for the lip biopsy, I really do not get why I have to have an appointment first before they do it, just do it right. I know what it is. So that will be another wait too.
Oh well wait, wait, wait, Not that I am so busy, but I hate waiting.
Well will keep this updated.
Friday, March 14, 2014
The Clouds Were Covering my Sunshine Today, My Cup had a hole in it, The Roses lost their Smell
In fact the day stunk. I am always Susie Sunshine, always a smile on my face, a laugh, my cup is half full, but I tell you I woke up today with that dam sun under the clouds. First of all my arms and shoulders hurt like hell, now whether it is from the small fiber neuropathy, or the HE, or the myositis or what ever they hurt and are weak down into my hands. Some days it is ok I just work through it all but today, for some reason is different. I am tired, not been sleeping so well, then you start to think, thank goodness for Kindle who takes up some of that wakeful time in bed looking at the ceiling.
Things are piling up, I don't know why? (sarcastic) two handful of autoimmune diseases in a two year span, husband almost died and was in the hospital for liver, kidney problems, while I was headed to Chicago's Northwestern teaching hospital for a second opinion. Stress, stress, my mom was sick with dementia I felt guilty like I could never do enough for her, I was working full time while trying to pay a SBA loan back on a business I owned and closed (road construction). My neurologist told me to quit my job or I could die, I was dx with HE (had never heard of it) went for five days of out patient steroids, blew up like a balloon. Yippie, then two months later our old Victorian home burned to the ground in the middle of the night. Yes we got out we were saved along with our lab. So thank full but we lost everything we have ever owned in forty years of marriage. So cup is still have full, we are alive right. Insurance is screwing us still no settlement and it has been two years. My husband started to drink for which he had been recovered for a few years. And now they think I have sjrogens disease, and I am believing I have MG. We will see next week when I go in for my appointment. In between all of this mess I was dx with one rare autoimmune disease after another. Then of course add the small fiber neuropathy on top of all of this mess and dam it I hurt. I am sick of being sweet Susie, happy go lucky, my cup is half full, the sun is always shining. I am tired, tired, tired. Tired of my lazy butt sitting in a chair because I hurt, or my brain is frying and I am confused and need a brake. I have no motivation. Maybe I need sun and spring. But what ever it is, This is not me, not my personality. I am no depressed (cant be I am on meds for this) lol, but no I am just mad, sick of it, need a break, pissed, I know when I wake up tomorrow it will be better, but for today I do not know who I am any more, or where I live (still in a rental unit) I don't know where all my saved sentimental items are that disappeared in the fire, I don't know where my mom is who died three weeks after our fire. I miss her so much dementia and all. Today I just want to be pissed.
Things are piling up, I don't know why? (sarcastic) two handful of autoimmune diseases in a two year span, husband almost died and was in the hospital for liver, kidney problems, while I was headed to Chicago's Northwestern teaching hospital for a second opinion. Stress, stress, my mom was sick with dementia I felt guilty like I could never do enough for her, I was working full time while trying to pay a SBA loan back on a business I owned and closed (road construction). My neurologist told me to quit my job or I could die, I was dx with HE (had never heard of it) went for five days of out patient steroids, blew up like a balloon. Yippie, then two months later our old Victorian home burned to the ground in the middle of the night. Yes we got out we were saved along with our lab. So thank full but we lost everything we have ever owned in forty years of marriage. So cup is still have full, we are alive right. Insurance is screwing us still no settlement and it has been two years. My husband started to drink for which he had been recovered for a few years. And now they think I have sjrogens disease, and I am believing I have MG. We will see next week when I go in for my appointment. In between all of this mess I was dx with one rare autoimmune disease after another. Then of course add the small fiber neuropathy on top of all of this mess and dam it I hurt. I am sick of being sweet Susie, happy go lucky, my cup is half full, the sun is always shining. I am tired, tired, tired. Tired of my lazy butt sitting in a chair because I hurt, or my brain is frying and I am confused and need a brake. I have no motivation. Maybe I need sun and spring. But what ever it is, This is not me, not my personality. I am no depressed (cant be I am on meds for this) lol, but no I am just mad, sick of it, need a break, pissed, I know when I wake up tomorrow it will be better, but for today I do not know who I am any more, or where I live (still in a rental unit) I don't know where all my saved sentimental items are that disappeared in the fire, I don't know where my mom is who died three weeks after our fire. I miss her so much dementia and all. Today I just want to be pissed.
Sunday, March 9, 2014
Another Delay
Another delay. I was just ready to leave for my Neurologist appointment Thurs and I got a phone call telling me they canceled it, the doctor was not going to be in that afternoon. I was glad they caught me as I live an hour a way and was just going to leave. But I was already, notes, questions, and everything ready to go. So now I have to wait another week and a half to get answers to my questions. Another week and a half longer to get the IVIG treatment. The worst part about it is that without the Imuran I can feel symptoms creeping up. Friday night and Saturday we had company and both times I could not talk, had to sit and think for almost every word that needed to come out of my mouth so hard to have a conversation with people. Thank God they were people that are really good friends. But it makes me so tired to try to talk when your brain is not working right. Plus it is still scary when it happens,. even though it has been since 2011 that I was dx with Hashimoto's Encephalopathy, it is still scary. So hopefully the IVIG will help me.
Well Friday it was such a beautiful day here it was in the 30s and I finally got to get outside and take down Christmas decorations, yes, really, lol Christmas decorations. I could not look at the red velvet bows one more day lol. But it has been way below zero here for months. So this was it the big day the day over 30. I did get half down, of what I had up so happy. I find this is such a weird thing for me to be so happy that I did something so simple. I use to do that before anyone was up in the morning and now I feel like I deserve an award that I was able to do it. Lol. But when I went to haul them down the basement stairs, I fell, oh yes I did and hit my head against a nice cement rocky wall. So of course I have had a nagging head ach too. One from my normal HE headache, and one from the rocky wall. I have to say since all my illnesses I fall a lot I do have to be more aware of what I am doing, or down I go, Or I for sure will tip if not fall, and this time lucky me, my husband was behind me so I got lectured for the rest of the night to be careful. I reminded him that he falls too, and he does not have ten autoimmune diseases plus sfn to blame. What could he say.
Well time for bed, I will return.
Nighty, nite.
Well Friday it was such a beautiful day here it was in the 30s and I finally got to get outside and take down Christmas decorations, yes, really, lol Christmas decorations. I could not look at the red velvet bows one more day lol. But it has been way below zero here for months. So this was it the big day the day over 30. I did get half down, of what I had up so happy. I find this is such a weird thing for me to be so happy that I did something so simple. I use to do that before anyone was up in the morning and now I feel like I deserve an award that I was able to do it. Lol. But when I went to haul them down the basement stairs, I fell, oh yes I did and hit my head against a nice cement rocky wall. So of course I have had a nagging head ach too. One from my normal HE headache, and one from the rocky wall. I have to say since all my illnesses I fall a lot I do have to be more aware of what I am doing, or down I go, Or I for sure will tip if not fall, and this time lucky me, my husband was behind me so I got lectured for the rest of the night to be careful. I reminded him that he falls too, and he does not have ten autoimmune diseases plus sfn to blame. What could he say.
Well time for bed, I will return.
Nighty, nite.
Wednesday, March 5, 2014
IVIg Here I Come Ready or Not (Watch out Hashimoto's Encephalopathy)
I had my rheumatologist appointment today, that went well, butttttt the rheumy wants me to have a lip biopsy to check for sjogrens disease (another autoimmune disease) I have thought I have had this for quite a few years. It made sense to me the dryness of the eyes throat, skin, but when he heard my small fiber neuropathy dx was positive he said it makes sense that I also have sjogrens. He said it does cause pain spread through out the body also. So I have to go off the Imuran for one month before the biopsy so that the biopsy does not come up with a false negative because of the meds.
Also same thing goes with IVIG. He said he would dx without the biopsy some people choice not to have it done because they will be treated the same with their other autoimmune diseases, but I said I want to know. It is good to have it documented if I do have it as it can be something that runs in families. So now the appointment Thurs with the new neurologist. I hope it goes well and I feel as comfortable with her as I did Dr. Santillan. I also hope now that things are pretty set that I do get approved by the insurance for the treatment plan as it is very, very expensive. I am sure it will take a month or so to work with the insurance with this to get it approved so it should work out ok, lip biopsy then the IVIg treatments start. cross fingers
I am also going to ask for a test for MG as I have had such termers that it is scary. Last night they started mid afternoon, lasted until today and it is ten at night and still have them a little in my arms. But last night they were inside my body and out, trying to eat, my right hand was trembling so bad, my fork was moving up and down and I could not stop it. This has been on my mind for a while as another who has HE has this also, and has been after me to be tested for this. As my symptoms were just like hers. So we will see what the neuro has to say tomorrow.
Also same thing goes with IVIG. He said he would dx without the biopsy some people choice not to have it done because they will be treated the same with their other autoimmune diseases, but I said I want to know. It is good to have it documented if I do have it as it can be something that runs in families. So now the appointment Thurs with the new neurologist. I hope it goes well and I feel as comfortable with her as I did Dr. Santillan. I also hope now that things are pretty set that I do get approved by the insurance for the treatment plan as it is very, very expensive. I am sure it will take a month or so to work with the insurance with this to get it approved so it should work out ok, lip biopsy then the IVIg treatments start. cross fingers
I am also going to ask for a test for MG as I have had such termers that it is scary. Last night they started mid afternoon, lasted until today and it is ten at night and still have them a little in my arms. But last night they were inside my body and out, trying to eat, my right hand was trembling so bad, my fork was moving up and down and I could not stop it. This has been on my mind for a while as another who has HE has this also, and has been after me to be tested for this. As my symptoms were just like hers. So we will see what the neuro has to say tomorrow.
Tuesday, March 4, 2014
Hashimoto's Encephalopathy and Me
Yup that is right and me. It is a part of me, it does not own me. I am still the person I use to be, just a little slower. My brain does not always function the first time around when someone is trying to talk to me, or when I am typing this. But at least I have one, right? lol. But there are days I feel like the Scare crow on Wizard of OZ if I only had a brain,. (do a little dance) but I would problaly fall if I tried to do the dance, oh well. HE. Is hell. Sunday I drove sixty miles more than I have driven in three years. But felt like I was having a good day not too much pain, brain felt ok. So away I went with my hubby who would have taken over if I had a problem. But when I got home my brain started to play tricks on me. My hearing for which is not the best anyway, was going in and out. Like someone had a volume control in my brain, turning sound up and down. I must have driven my husband nuts with the volume on the changer for the tv but it was bad. Then the headaches started, still have them today and it is Tuesday and that was Sunday. Feeling blurry eyed, can not see good. So maybe the driving so far was not a good idea? Who knows right?
So tomorrow is the rheumatologists appointment, then thurs is the new neurologist appointment. So excited (NOT). I have to give the new neurologist a chance as I know she will be good and I wanted to stay in the same clinic as the old neurologist so I would not have to endure all the testing again. (For what reason) but so many doctors like to do their own tests. Thursday we will discuss the IVIG that is suppose to be my next treatment. I want to know how much for how long, at home, hospital. Then see if insurance will pay for it. It scares me for their can be some very unpleasant side affects. But then again I want to stop the progression of the small fiber neuropathy so I can maybe become more active like I have always been. At least for a little while. They need to control my autoimmune diseases to be able to help slow up the sfn. Nothing can cure it,(like the autoimmune diseases I have) but hopefully keep it at bay for a little longer.
So I will let all know.
Please remember our book we wrote, Understanding Hashimoto's Encephalopathy available on Amazon or your larger book stores. This book is a wealth of information for anyone who is suffering from this disease or knows anyone suffering from this disease. Patients own stories of their journeys to diagnosis, and scientific articles and resources are the heart of the book.
Bless you all
Susie
So tomorrow is the rheumatologists appointment, then thurs is the new neurologist appointment. So excited (NOT). I have to give the new neurologist a chance as I know she will be good and I wanted to stay in the same clinic as the old neurologist so I would not have to endure all the testing again. (For what reason) but so many doctors like to do their own tests. Thursday we will discuss the IVIG that is suppose to be my next treatment. I want to know how much for how long, at home, hospital. Then see if insurance will pay for it. It scares me for their can be some very unpleasant side affects. But then again I want to stop the progression of the small fiber neuropathy so I can maybe become more active like I have always been. At least for a little while. They need to control my autoimmune diseases to be able to help slow up the sfn. Nothing can cure it,(like the autoimmune diseases I have) but hopefully keep it at bay for a little longer.
So I will let all know.
Please remember our book we wrote, Understanding Hashimoto's Encephalopathy available on Amazon or your larger book stores. This book is a wealth of information for anyone who is suffering from this disease or knows anyone suffering from this disease. Patients own stories of their journeys to diagnosis, and scientific articles and resources are the heart of the book.
Bless you all
Susie
Wednesday, February 19, 2014
HE, Myostis, SFN, UCTD?
Went out of the house today, Yeah. It was sunny, almost 40 snow melting, puddles, it was a lovely day. So took a ride to our local k mart cvs, pet store and our grocery store, gone for 1 1/2 hour and came home and could hardly walk. CVS I went through the drive through to pick up the prescriptions so only three places, pushed carts for stability but came home so tired, my legs could hardly walk. My back hurt, my arms feel weak. I hate this. Such a beautiful day, I am not going to let the pain get me down. I know I have said this before but I hate more than anything not knowing what is causing it. The myositis? The Small Fiber Neuropathy? The connective tissue disease? The hashimoto's encephalopathy? Which? My guess I think it is a combination of all of the above. But I have made up my mind, to get moving, regardless of the pain. I do what I can, I will work around the house, cleaning, washing, sitting, vacuum sit. Do dishes, sit. So I am moving, still swimming, trying to go more. I am going to start my little stationary bike I bought. It is a small one for legs only. But I want to be able to keep up with my little grand daughter, so I need to keep moving.
Well a birthday is coming up next Monday. Mine. I will be 60, 60 how can that be? I feel like a 20 year old in my head lol. My body no, but where does the time go. It is also the 2 year anniversary of our home burning to the ground. Just the last few months it has really been hitting me. I think I was in a sort of shock since then. Now I have time to greave and so I am. Although I know we are lucky to be alive and yes I celebrate that along with my birthday. But you know when you loose everything single thing you have ever owned in 40 years of marriage it is pretty sad. Then on top of that we are still working with our lawyer and the insurance company. We had replacement insurance yet here we are two years later in a rental with nothing settled.
Well time for bed, I told myself I was not sitting up tonight. Need to get more rest. Night all.
Well a birthday is coming up next Monday. Mine. I will be 60, 60 how can that be? I feel like a 20 year old in my head lol. My body no, but where does the time go. It is also the 2 year anniversary of our home burning to the ground. Just the last few months it has really been hitting me. I think I was in a sort of shock since then. Now I have time to greave and so I am. Although I know we are lucky to be alive and yes I celebrate that along with my birthday. But you know when you loose everything single thing you have ever owned in 40 years of marriage it is pretty sad. Then on top of that we are still working with our lawyer and the insurance company. We had replacement insurance yet here we are two years later in a rental with nothing settled.
Well time for bed, I told myself I was not sitting up tonight. Need to get more rest. Night all.
Monday, February 17, 2014
Hashimoto's Encephalopathy (Autioimmuine Encephalopathy) SREAT (Steroid Responsive Encephalopathy Associated with Tyroiditis) HE(When will they decide on a name).
Hashtimoto's Encephalopathy (HE) is a rare autoimmune disease characterized by neurological and psychiatric symptoms, and is one of the listed "rare diseases" with the NIHs Genetic and Rare Diseases Information Center.
He is an autoimmune disease in which a patient's antibodies mistakenly turn on and attack the patient's brain. The results of the attack may include severe cognitive impairment, speech disorders, seizures, memory loss, impaired balance, movement disorders, and sometimes psychosis. Patients sometimes may fall into a coma and in rare cases it can cause death.
Unfortunately, HE is not well understood and patients often face an enormous struggle trying to find the correct diagnosis.
But three women came together, and wrote a book the very first of it's kind. There has never been a book written on HE. If interested in this very informational book please ask your local book store or go to Amazon and ask for (Understanding Hashimoto's Encephalopathy) It will be available on Kindle with in a week.
Hugs and kisses to all you suffering friends, and I hope this book sheds light on a very rare disease.
Thursday, February 6, 2014
Understanding Hashimotos Encephalopathy
This is the title of the book I have been working on which is on sale as on Dec 31, 2013 on Amazon and next week it should be available on Kindle. I am so proud of all the work that we have all done on this book. There is so much information for anyone who has been dx with HE, or family members of patients with HE. There is wonderful information for the medical world as we have over 40 patient stories of how they were dx, misdiagnosed, treatments options and symptoms. Their stories as individual as the rare disease its self. As of a few weeks ago we have sold over 200 copies. So exciting. All money goes back into our non profit org that will reinvest the money into sending copies to teaching hospitals, 3 rd world countries and so on. I feel we really can make a difference.
Being sick with chronic illnesses can make one feel pretty useless. Not only can you not work and add to the family income but you are not well enough to even keep your own house clean, or have the strength in your body to take a shower on some days. So to do something positive with the gifts God gave us is very powerful to me. It makes me feel like I can still contribute to society, make a difference. None of us are scholars writing this book. But we did it through all of our sicknesses, and set backs.
So winter has been raw, heavy snow, and heavy legs for me. Hard walking, using a dang cane to steady myself. It does help with the body movements but now with my head movements. It hurts to use it. It hurts my pride. I just came back from a very close family friends funeral, and my legs have been very back along with my back. But I would not use that dam cane at the funeral, no instead, I stood up in the front talking to the family tipping over so that one family member had to catch me and straighten me up. So lets see what would have been more embarrassing? Me tipping over for no reason, or using a cane, gee lets see. Well that was a lesson learned tonight.
I have to get back swimming, next week, two much time off. I feel it too. I need to keep; what I still have moving.
Well I had to give into steroids over Christmas, I had to go on a steroid pack, to help me through. My brain, my word finding, was awful. I was dragging my right leg and foot. I had so much confusion and no concentration in anything and everything I did. Even recipes for which I never had problems in, are now a problem for me. I can read them over and over, yet take my eyes off the recipe for one min. and I forget something, this is a downer for me. I have always prided myself on my cooking and baking, not no more.
My lap tops been down for over a month, been trying to use my kindle for which thank God I had it for e mail and faced book, but the auto corrects were driving me nuts along with who ever was trying to read my messages. lol.
Well time to head to bed will be back soon.
Good night
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