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.
Sunday, June 29, 2014
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
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