Welcome to the Project of Me, Myself, and I!!!
To kick it off.... in this first post I want to take the time to tell you about my medical background because after this "downer post" its all about being in the present and creating a better future. I just know when I read other blogs of the same nature and they state they are dealing with a "chronic illness" - I want to know what it is!! I'm interested in the facts of the person - just a nice little layout - so I can better understand them. Like a powerpoint presentation - not an essay!
So here is a snapshot of my history - by no means - could I ever in a million years tell everything that has happened - but i will give you the highlights
As I mentioned in the "About Me" in the side bar - I have RA and Lupus...and if you were to ever read my medical chart -a zillion other diseases would be listed that they have diagnosed me with but they are either a result of the main culprits RA and Lupus or they are a side effect of medication. As anyone who has an autoimmune disease knows...once you have been diagnosed with one....you will automatically start stockpiling diagnosis. Autoimmune diseases bleed into one another....
I was diagnosed with JRA in 4th grade but I only had a flare every two years ( like clock work) for a couple of months and then bounce back into remission ( no meds, no nothing).
When I was 17 I was on Spring break in Daytona Beach when a flare decided to rear its ugly head again. I was flown home - right into U of M hospital and 3 hours later I was informed that I also have Lupus. I haven't been in remission since.
I am now 35 ( today is my birthday)
From 17 - 35 I have had:
** both of my hips replaced (at that time I was the youngest person at Uof M to have this done) and just this year my right one had to be replaced again and my left one is the very near future.
** 5 hip dislocations
**right knee replacement, left one coming soon...
**right foot fusion, left one needs to be done....
**Every single joint in my body has documented Rheumatoid Arthritis-
** Melanoma Cancer ( included surgery to remove the Melanoma and surgery to remove the lymph nodes it spread to)
**Vulva cancer ( surgery)
**Been on Life Support/Ventilator twice
** Severe Cellutlitis ( skin so thin from years of prednisone - its starting to rip.) Two times this past year I had very big open wounds - that had to be debrided weekly for 6 months because they can't stitch my skin and had several hospitalizations due to the cellulitis.
** 2 rounds of chemotherapy ( and as crazy as it sounds the chemo wasn't for the cancers! My doctor found that Chemotherapy can bring me out of severe Lupus flares! )
** lost all of my hair -twice
** ulcers, stones, cysts...you name it - there is a very good chance I had it....
** walkers, canes, wheelchairs and scooters
**So many Hospitalizations and ICU stints that I couldn't even begin to count:) Seriously!
** I'm not even going to attempt to list all the different meds I have been on - Insane amount.
** Brand new issue: On July 20th I have to see a neurosurgeon because apparently my spinal cord has shifted (due to RA) and is now pressing on my brain
I could keep going...but I don't want to. I'm hoping that gives you an idea of what I am up against.
Here's the thing - I was young, immature, and stubborn at 17 when all this was thrown at me and as a result I went into denial. Deep, deep denial. I took my meds, but I did not take care of myself AT ALL.
I didn't want to be different or miss out on the things my friends were doing. Which is both good and bad.
On one hand I didn't let it stand in my way of what I wanted to do even if that meant ( going to the bar with a pic line..not kidding) I graduated college and even received my Masters Degree. Don't get me wrong -I did miss out on a ton, there are somethings that even if my mind was determined my body just physically would not let me do it.
However, on the other hand I kept adding more insult to my body with drinking and smoking, partying, eating bad...life of a college student. I would be in the hospital for a week and then get out and that night go to a party. I also did this through my 20's- yeah....stupid.
Denial is very powerful! I'm sure lots of other people would have had a wake up call after the first time on life support...but my skull is thick and my denial is strong.
As crazy and insane as it sounds...over the past 8 months - it has hit me like a ton of bricks. Its only now that I have really started thinking about the future and where my body is going to be in 10 years, 20 years??? Freaking out, you ask. YES!!
I just got married last month and I turned 35 today - I think that has ALOT to do with it. My body is letting me know too..LOUD AND CLEAR!
When I was in my 20's - parts of my pre-RA body still existed. I was very strong and healthy when I got sick at 17 - I was on a national dance team and exercised all the time.
However, at 35 - none of that healthy body exists anymore.
I can not put into words how ravaged my body feels.
In the past with all the surgeries, hospitalizations, etc...I always felt strength in my body to fight but I don't feel that anymore - it just feels broken. That really scares me.
Bottom line....I can't just lay down and let this happen - I need to do something!
I'm sick and tired of being sick and tired. Plain and simple.
So enter the blog!
I feel that keeping a blog that other people may read will keep my on track and provide me with motivation! The blog is not to complain or commiserate with others. It is for motivation and inspiration and HUMOR! Humor is the best medicine after all!
At this point in my life I can take some time to focus on me - on feeling better. Now that I am married - I am covered by Mike's health insurance - so I don't HAVE to work a full time job to receive health benefits ( don't even get me started on that!). I am very lucky to have a supportive husband!! This is not a forever thing, but it is a right now thing!!! So.......
LET THE HEALING BEGIN!!!
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