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

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.

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.

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.

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

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.