Forgot to say

I forgot to add, that I will do what ever I have to to help my health as I want to romp with my new grandaughter who is the delight and love of her grandmas and grandpas life. We have had so many terriable things happen in the last few years, and I could go back ten years if I wanted too, but she makes it all right. Puts things in porportion. Makes you see why we are here on earth. Spread our love, whether it is a little brand new baby who happens to be the most beautiful baby in the world (I am not kidding) lol. or to offer love to a stranger who needs someone to talk to. It does not matter that is why we are here. God is good to us.

Back IS A Mess

Well there is something good about learning you are not just a big baby, and there is a reason your back hurts so bad. But really, when I saw the report,(for which I need a magnafying glass, as I had to copy it off the web under my test results, with a page missing) still waiting for the hospital to send me a copy of the actual report. But anyway, but when I read it, and googled all the results, I was a little amazed I have days that I can do anything at all. The report showed (condensed version): Multi level degeneration disk disease Prominent facet hypertrophy lower lumber spine No stenois in central spine, but there is some right greater then left foraminal narrowing at L4 L5 becuase of disk uncovering the right is considered moderate, left mild (stenosis) There is also grade 1 subluxtion at this level L4 L5 Basicly this is what I get out of the report I need the magnifying glass for, lol. So I will cont. the physical therapy for a month and see what improvment I see. Hopefullly there is improvement verses surgery which scares the hell out of me. Yet as I research it does say, if you wait to long for surgery, it may do too much damage and the surgery will not help. And I know I have had this for a long time only to get so bad, I can not hardly walk. So onward we go.

Spinal Stenosis

Ok now, yes I was diagnoised with spinal stenosis. I just wrote for the copy of the report to see why I have it, what is the cause. As you see as I researched the diagnois I realized that is can be a result of scleroderma also. I had a feeling about this, as I went to scleroderma site and researched it. As I have been diagnoised with scleroderma, then changed to UDCT with features of scleroderma along with the rest of the mess I am. There are other causes also of this spinal disease but I need to see the report to find out which it is. Very interested. So I am to try physcal therapy for one month, and see how it works, if it does not help me then surgery. That Is scarey. I have been swimming since Jan and that has not helped and that is suppose to be the best source of exercise for me. So we will see give it a month and cross my fingers. I do wonder then if this is caused by scleorderma if they will change my connective tissue disease again back to scleroderma, who knows. Of course the last few days I have felt better, ha, ha, just like a kid. My dr. Neuro did say the neuropathy is more than likely causeing my stenosis worst because of the way I walk, or stand, or sit, etc. with the neruopathy, my feet, legs, arms are in pain, so I do things differently which could cause pressure on the spine. Makes sense to me. Well happy Memorial Day everyone. It is sunny and beautiful here in Michigan. I hope it is by you too.

PAIN AND WEAKENSS IN LEGS GETTING WORST

I went to the Neruologist weds and she is thinking that the weakness and pain I am having in my legs could be due to the back problems that I have been having for a long time. I am going in for an MRI next week to see if I have stenois in my spine. All ready know that I have denerative disk disease and faucet disease in my spine, but now looking for this. She did say that if it is there surgery may be in order. I really do not need this on top of everything else. It scares me I admit it. But yet I can not help but think that if I could walk more and do more with out all of the pain,it would be so worth it. Now I can not walk for ten mins without extreme pain. I sometimes all of a sudden realize how much pain I have all of the time. How it gets worst when I try to do something, or more than just normal everyday things. I never combline. But I am getting tired of the pain. So if there is a way to help me with this, I had better get over the fear of the back surgery. I would like to keep up with my new grandbaby who is the most beautiful thing on earth to me. She makes everything right. All the problems that we have had in the past few years all seem like nothing when looking into that babys eyes. I love her so much. My new puppy is keeping me busy, running afer him, hoping I can catch him fast enough when he squats, lol. I keep wondering how long it is going to be before he is house trained. I have never trained a puppy, we have always had dogs but my kids have always trained them. I never had nothing to do with it except to yell at the kids to keep their puppys in control. lol. Well I am learning now. What I have is a little teddy bear breed. He is adorable, the ladies that come in all love him to pieces. He is a little lover, butttt he is sassy, taking his time learning the rules of this house. Lucky for us our 12 year old lab likes him as he plays with him often. It is a sight to see this big black lab rolling around with this 4 pound puppy. Well time to go, my puppy wants to go to bed now, (our bed) for which I have said for over 40 years I would never ever have a dog in our bed, welllll guess what? The litte sassy puppy is in our bed. lol.

I Am Sick OF Being Sick

I normally take my illness with a grain of salt, cup half full, but tonight I feel the cup is draining. I am sick of being sick. Yet I know I am so lucky to be here, and to have treatment and things could be a lot worst.But when I am invited to go some place and I can not go,hurts. The dam Hashimoto's Encephlopathy is acting up. Yes more then likely my own fault, because I over did things this week, not physcally but with my brain. Trying to write and help others with their stories for our book on the same subject, the HE, and trying to get people to write their stories for our book, getting the fund raiser cook book ready to publish, etc. It over loaded my brain. I could not get my brain to function right. I could not figure out which thing to do first, over loaded, too much information. I use to be a clothing buyer, figuring out six months out on buying woman and mens clothing, which is very complicated believe this or not, owned my own business, did my own business plan, managed two stores at one time, I now can not handle too much in front of me, my brain will just like close down on me. I hate it. So since yesterday when it over loaded, I have not felt well, dizzy, eyes are funny, my head feels like my hair is pulled back tight in a rubber band, pulling, I am walking into things, dropping things, my face is burning, red, hot, hands are swollen all day long and worst at night, (this I believe is the UCTD. Been in the sun for which I am photosensative, so who knows right? But I do know the brain stuff is from the H.E. The problem is I do not look sick, I look in perfect health. In fact (well fed) healthy person. lol. But a person that lives with chronic pain and brain issues, is never ever a person in perfect health. I guess I am just having a pitty party for myself tonight. Well poor me, tomrrow will be better.

Why Did I Fall

Well good question, why did I fall down the back outside stairs? Leg give out, foot turn without me knowing it, me being nosey at the neighbors and not paying attention? Well that is the reason I am giving everyone. Fell on my right knee so hard, it is black and blue all around it. At first it hurt where the sidewalk burn was, (felt like a kid again) not! But now over a week later, maybe going on two weeks, it hurts worst. I wonder if I did something like tear the ligaments. Just what I need on knees who joints are affected from lets see, UCTD, I think that is the one. Lol oh well might as well laugh right? I do worry though why I fell, if I am going to be true to myself. I hope it was not my leg giving out or foot. Being nosey is better. Days are up and down. I have to start the Vesacare again, I stopped because of itching, but I was also out of allergy pills, so now that the itching stopped time to start again and just see. My heart is hurting today as I read a story for our Hashimoto's Encephlopathy book from a mom who lost her little girl to this awful disease forwhich is so unknown and underdiagnoised. It makes my problems small, non exsisting. I can not even write about it. The cookbook is done, just waiting to put all the personal pages together and off to publishers. So excited I hope we raise money for research for this disease that took that little girls life.

Bladder Issues Yippie

Well, another specialist added to the list. Yippie, is right. Nice doctor, very smart, but what the heck. I know have a what I call a pee pee doctor. I had to give in and go after suffereing for a few years. It seems with all my issues, the small fiber neuropathy, the Hashimoto's Encephalothy, UCTD, myositis, that they all can cause Bladder issues. Well of course it does for me. I would not want to miss out on a side affect of any of my disease. With out sounding gross, I have a bladder that always feels full, always have pressure and have to go. Even just a little, but where others would not even notice that they have to go,my bladder causes me to be uncomfortable. So I run constantly. Also have incomplete emptying. This is where you are done, get up and go to pull up undies and you start to drip, told ya gross, but this is a fact of life for me. So my new Doctor, did some tests for which I will never do again, Yuck. Maybe it is just me, but I am sorry never again. One was a cafiter that is equiped with a camera and is inserted into the bladder and moved around to check out all the bladder walls and check for cancer or anything else, then the other test they insert two cafiters into the bladder in different areas hook you up to electodes that measures your muscle contractions, then with an IV with water they fill your bladder up to compacity to see how much you can hold. I have to tell you my bladder was so sore all night after that I could hardly stand it. I know they do it for a reason to make sure there is nothing bad going on, so I passed that, yeah. But the pressure was very bad. Now trying Vesacare, Can I tell you holy cow price is so high, 199.00 for one months worth of meds. The doctor is very nice and did give me names of other drugs to check to ssee if my insurance will pay for instead of this one. I have had some good days since taking it and some bad. He also said not to eat fruit like oranges, cranb juice, or acid juices and worst of all, not to drink caffined pop. That is my only last vise. Now gone, That is depressing. I have to go back in a month, he said surgery is last resort, and that was good news too. So that is enough of that, yuck. Have had some really bad days, with pain, vicadin does not even touch the pain, forwhich is everywhere in my body. I can not touch upper arms, or upper legs, so much pain to touch. I am still swimming and enjoying it, but not going as much as I want because of the pain issues. I could not tell you whether it is from the UCTD or myositis, Small fiber neuropathy, what I just do not know, had tests done, but nobody knows why the pain,they thought it was from the cholesteral meds I was on, but been off for over a month and not better. It maybe my back too so I will have to go back to the pain specialist. Our book for Hashimoto's Encephalopathy is coming good, going to a publisher in June, so excited around 50 stories of only around 200 of us who are dx. What a great feeling. Also doing a fundraiser for the cost of publishing we have a cookbook to come out soon with recipes from all over the world. All of us HE people, so nice to all come together and do something positive. We also have a website now for the Hashimotos Encephalopahy. Please go to www.hesaonline.org to fing a lot of information on this rare disease and links to even more information. Well for now, I have to go and play with my new puppy. He makes me move even when I think I can not. I can move fast when I see him sniffing around for a place to go potty lol.