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.

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.

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

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?

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

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.