Dealing with an invisible disease

Hi ALL it's been a busy week ~ had my first Remicade Infusion on Wed. which left me quite wiped out.  So I am still a bit pooped. I'm unsure if it is the relieve that I did not have any major reactions or that it really did leave me tired out.  FYI: To all who do not know "Remicade" is a new Bio-Rx to treat a multitude of diseases.  Of which I have UC (ulcerative colitis) & types of Arthritis. It works on a bio-level, not just numbing the area but interacting with the cells to (hopefully) calm them down.  The diseases it treats are autoimmune and can really devastate a persons life.

What I personally am affected with are generally known as 'Invisible Diseases' as you can look at me most days and think - hay she is a healthy person so why is she acting lazy? To those who have such diseases or are informed it is not the person 'playing' ill or lazy but truly a physically debilitating issue. Recking havoc on their social, emotional, personal, work, fun - basicly all aspects of their life.  For me it hit in my thirties forcing me to go from go, go, go to "stop/slam into a brick wall" Stop.

This is a disease that effects every aspect of my life.  Not only physically - but emotionally too.  Sure it sounds great not being able to keep a FT job, but imagine it really.  Daily never knowing IF you will be feeling well enough to even go out. Emotionally the toll, from not being able to financially supporting yourself (after years of doing so). To continually having to feel like your letting the people you love down - because you just can't. Sure you can push yourself for a day - but the consequences are devistating, sometimes leaving you down for a week(s).

Learning How to deal is the biggest issue. Relearning how to live - Just so you can do so! Having to reteach yourself what you can do in a day, a very tricky balancing act.  Dealing with what you have had to 'give up' or 'stop' doing can too take it's toll. 

Dealing with a new life:  I have had to learn to stop volunteering to do things, sounds simple. But for someone who did not know the meaning of 'no' or had a hard time saying so, quite difficult. I felt & still feel as if I am letting everyone down. Not being able to commit to things, in case I wake up in a flair. Frustrating! Then not being able to financially provide. Going from being independent to having to rely upon state aid - ahhgg the embarrassment!

Dealing with the government: Trying to win my case with them for SSDI.  For someone who has worked since they were 14 yrs old and earlier on a farm... to not being able to work an 8 hr day. Quite emotionally devistating & makes one feel like a failure.  First you really can't work, finally a doctor(s) figure out why, deal with that diagnosis. Then a government agency saying no you can work - even though ALL your specialists (Doctors with real degrees) Say NO. Frustration upon frustration, creating even more stress more side effects, more debt... truly devistating.

So to all ~ I am doing OK Today!  I can't say this evening I will be ~~ Nor can I say tomarrow will be good. It is not you I am avoiding, or my responsibilities.  So please try to understand, I am trying, I am still me, I am just trying to cope/ learn/ Live. A little understanding, leway, help is appreciated... not pitty, sad looks or 'you poor thing' comments.

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