The Beginning

Hi here I am. My own blog. My oldest son suggested this a couple of years ago to me, to help me address my chronic illnesses. I had just mentioned to him a day ago that I thought I would like to do this and here I am. I am so lucky to have the family I do.

I will warn every one who may stumble upon this blog that my spelling is bad, my grammar may not be perfect but my heart is in this all the way so I do not care this is me

As you see by the blogs title Susie's Autoimmune disorders. It is plural. I have many. The last one to be diagnosed is a biggie. Last November 2011  I was diagnosed with Hashimoto's Encephalitis/Encephalopathy. Which is going to be one of the reasons I may not always make perfect sense to all, or use the right words as it is hard for me to think or to express myself since being diagnosed with this disorder. I will just touch on this lightly as I will go through everything later. (I do not want to scare anyone away right away) lol. H.E. is an autoimmune disease for which your body attacks the neurons in your brain. This makes it very difficult to sometimes speak the words I want to speak, say the right words I want to use.  I have no concentration.Or walk straight and not run into the door way, or walk down steps without looking like I had a few too many. I will drag my right foot where it feels like I can not pick it up. This is just a few of the things I endure with this disease. But this is why I bring this one up now in the beginning so you do understand why sometimes you might think (what the heck is she saying) lol, or spelling lol. At least it is a good excuses for someone who has always been bad at spelling. But gee I was always good at concentration, and thinking, and talking was my job. That hurts. My memory was the best I knew of anyone having, but long gone is that.

Well enough excuses for me. Let me tell you what I have so you understand where I am. 
I am diagnosed with:
Raynauds disease
Hashimoto's (hypothyroid)
UCTD which is Undifferentiated Connective Tissue Disease with features of Scleroderma
Lymphocytic colitis (which is an autoimmune disease also)
Myositis (Rare autoimmune muscle disease)
Peripheral Neuropathy/ small fiber neuropathy
 Hashimoto's Encephalopathy (autoimmune, your own body attacks the neurons in your brain)
Inflammatory progressive myopathy (muscle disease).
R/A they are questioning but blood work comes back negative but hands look like I have it so waiting.
I have swallowing issues< Bladder Issues (Incomplete emptying and no pressure) due to the neuropathy and also the Hashimoto's Encephalopathybr />
IBS
High blood pressure
Esophagus reflux
Hearing problems
Allergies/Asthma
Photosensitive
Depression ( I hate to add this one) but since I am on lexapro and adivan I suppose I should.

They have told me in the past that I had lupus that has changed, then central nervous system lupus that has changed, then MS that has changed I was told point blank I had Systemic Scleroderma a year or so ago then changed to the UCTD with features of scleroderma.  I have been checked for everything you can imagine. So lets hope this list does not increase.

Anyone with chronic illnesses knows it is hard to be up all the time, the chronic pain, the doctor appointments, the inability to do things you use to do the way you use to do them.. It is frustrating to say the least. Some days you feel like wow I feel good, and you whip around the next day you are on your butt, grounded, can not walk it hurts, can not stand for long it hurts, your arms feel like they weigh fifty pounds each. Everything you do is an effort. It makes you feel lazy and guilty. Then there are the days you think you can go shopping because you felt ok at home then you get out of your car and walk twenty feet into the grocery store and it hits  you, your legs feel like lead weights, you have to pull yourself along, hang on to the cart, pray you make it through the store and get home. The problem is you just can not predict. Nor can you predict how you are going to feel. You can not plan anything to far ahead. It is always last min. There is a great theory some one wrote called the spoon theory which pretty well does describe how people with chronic illnesses feel or handle activities. It basic says if you start your day with 7 spoons and use 3 to vacume 2 to cook dinner, 1 to shower you only have 1 left for the rest of the day, what happens if you have a doctors appointment which is usually for me a 4 spoon experiences, or what if you need something from the grocery store that is 5 in its self. where do the spoons come from, my theory on this theory is that when you use more spoons then you start with, you are now going into the next days reserve. Which sooner or later you have none left and are grounded to a bed or chair for the day. Or worst yet, you may have a flare in one of your diseases if you do this too often. it is a real balancing act of energy or importance. I have learned the word NO finally at the age of 58 and also I have learned what is important to me to do. This was a learning journey to be sure.

Well I will be back, time to go and plan the new year that is here.
Susie