30 Day Chronic Illness Challenge… Day 1… My Introduction

30 day RA information challengeSo… I did my RA introduction a few days ago. It’s been a REALLY long week this week and I’m feeling it this morning… so I thought I would sit down, slow down, and catch up with myself. So here I am. Ta-da.

I found, on Facebook, a picture sometime earlier this week posted by someone who started doing the 30 Day Chronic Illness Challenge. The challenge was created by @cfs_zombie, I think on Tumblr. I don’t actually do Tumblr (although I think I probably have an account somewhere) but a quick search on Google has me believing this to be true. The challenge… 30 posts in 30 days… talking about chronic illnesses in general… mine, I guess, in particular… to help people to better understand.

In my head, I’m struggling with the illness part of this, because I don’t guess I really figure what I have is illness.  But because I am who I am, I decided to go hunting to figure out if what I’m going to be talking about (if I ever get around to it) is actually an illness or not.

Google suggests that an illness is

a disease or period of sickness affecting the body or mind.

and a disease is

a disorder of structure or function in a human, animal, or plant, especially one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury.

So… I guess that by definition… I’m good here.

Looking at the picture, Day 1’s prompt is An Introduction: What diseases (dis-eases) do you have and how long have you had them.

Hi.  My name is April.  I am a professional geek (IT… Oracle Database Administrator… it’s okay, I’ll wait until the glazed and befused look is gone… I work with computers… all day… every day… and in my spare time I sit at a keyboard and do it all some more…) and writer (geek books… blog… poetry… blah blah blah).  I’m actively overcoming the fact that I leaned decades ago that “people like me” don’t do what I do and they certainly don’t get paid to do what I do.  One of the most personally rewarding days of my life (even better than finishing the Disney Half Marathon without getting swept and seeing my family at the finish line all cheering me on) was getting the letter saying that a publishing house was willing to take a chance on my first book… and they were willing to pay ME rather than me having to pay them.  I was told that if I ever wanted to see my name on a book, I would have to pay someone to put it there.  BOO-Yah!!! psyche.

Okay… that’s me.  Now for what colors my world.

1. RA.  Rheumatoid Arthritis.  I’m creeping up on 5 years diagnosed,  or 8 years active disease.  If you want the whole sordid story of how I was finally diagnosed… you can see it in this post.  I have RA.  So far, it does not have me.  I think that is why I keep coming here and brain dumping… so you know it doesn’t have to have you, either.

2. Sjögren’s Syndrome.  This is when your body stops making as much fluid (slobber… tears… interstitial fluid… depends on your flavor of Sjögren’s).  For me it is tears.  My eyes get very dry, they hurt rather than itch like allergy eyes, and it is, to one degree or another, almost all the time.  I use buckets of eye drops (the tear replacement kind) to ease the symptoms.  Sjögren’s is often a secondary “thing” with RA.  I was diagnosed with this 4 years ago by my eye doctor.  I don’t make enough tears…. some day I might have to deal with tear duct plugs.  I hope not.  I’m SUPPOSED to sleep without any fan on in the room.  Yeah, that one I don’t do.

3. Raynaud’s.  Raynauds is when:

Raynaud’s disease is a rare disorder of the blood vessels, usually in the fingers and toes. It causes the blood vessels to narrow when you are cold or feeling stressed. When this happens, blood can’t get to the surface of the skin and the affected areas turn white and blue. When the blood flow returns, the skin turns red and throbs or tingles. In severe cases, loss of blood flow can cause sores or tissue death.

It is often secondary to RA.  No, mine is not sever.  All mine does is become a pain in the butt when I’m working sometimes and when I’m in meetings.  I carry hand warmers in my backpack (the kind you can get at your local sporting goods store or sporting goods department in your discount department store).  I have three pairs of fingerless gloves on my desk at work and two in my backpack and four in the drawer of the desk at home.  I have dozens of them.  Some I cut the fingers off of, some I got lucky and they started making with finished finger edges the last few winters.  I stock up.  Sometimes it takes a hot bath or soaking my hands in hot water to get them to stop.  Yes, I look goofy in July wearing gloves.  No, I don’t care any more.  I forgot I had them on the other day and I had to run to a meeting and some guy made a kind of snarky joke about was I cold.  I refrained from telling him that it was a fashion statement and I really didn’t want to leave fingerprints as evidence any way, and shot back… only my hands… (truthfully only my right hand most of the time, but I really don’t want to do the Michael Jackson look).  I honestly gave up caring what people think most of the time… it isn’t worth the stress and effort to make THEM happy.

4. Aspergers.  How long have I had it… all my life… diagnosed?  Nothing official aside from having my son’s psychologist tell me… you know you have it too, right?  Technically PDD NOS.  Since it it no longer considered to be an official diagnosis code, I guess Autism… For my son, it helped him in his head to have a label on why he is different.  For my daughter it helped her understand some of the things that she had apparently always felt frustrated with but didn’t understand why she was so different (hating bells and other sounds… some of the OCD things that she does… the fact that she couldn’t remember the difference between ankle and wrist or between minute and week until she was about 8).  For me, it explained a lot.  I understand myself way better now.  I’m not going to to run around and tell everyone that the reason I’m an ass is because I am aspie (I had a co-worker who did that at a previous employment).  I work hard to not alienate people.  Doesn’t always work and sometimes you have to push back on people who are being deliberately passive aggressive.  I’m not looking for someone to put me on disability.  It explains, to me, why I can lose myself in an IT problem for hours and hours and hours and why I’m a grammar nazi.  It is what it is.  It’s part of me.  And thinking back to the fact that, yesterday, I was reminded that I’m the colorful one… it means that I am the one that people remember and sometimes (especially when it has been a long week) I need to remember that I should engage my filter…

So… I guess that is post 1.  Introduction… who I am… what my conditions are… blah blah blah (it’s a blah blah blah kind of day… I want to build a fire in the fire pit in the back yard to day and make baked apples… ).

I found this other blogger (Jen) who finished up the same challenge I’m working on.  I like her take on things… She did hers in January… I probably should have waited till October and done 30 days ending right before Halloween… but… Nah… I’m good.  🙂

Will I make it in 30 days?  I’ll make it in 30 posts… we’ll see how many days that takes…


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