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.
Saturday, August 23, 2014
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.
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