On Friday I turned 26 years old!  And I really had something to celebrate!  The night before I got a call from my doctor letting me know that the lab tests were a mistake and I don’t have a blood disorder!  I was so relieved I almost cried.  So on Friday I was able to celebrate my birthday worry free!

Even being able to celebrate my birthday not in the hospital is something I’m grateful for as I spent my 24th birthday in the hospital and my 25th birthday recovering from just getting out of the hospital.

So this year I celebrated by giving myself a much needed pampering.  My mom and Melissa (my caregiver) joined me in getting our hair cut and colored.  I dyed my hair red with brighter red and golden highlights.  Then we went out for a birthday lunch at one of my favorite restaurants in the mall.  Afterward we went to Bare Essentials and got our make up done.  Then we went shopping for a while and Melissa bought me my birthday present – a new pair a jeans that actually are small enough to fit (another thing to celebrate – weight loss).  Finally we got all dressed up and went out for a nice birthday dinner!

When living with a chronic illness it can seem like its one bad thing after another.  So it’s especially nice to have something to celebrate for a change!

Sometimes in the face of adversity you just have to stand tall.

My doctor woke me up on Sunday morning to tell me that I may have a blood disorder – Polycythemia. Unless there’s been a mistake either with the lab or the blood draw itself, I am making too many red blood cells and my iron is much too high. He was hesitant to tell me what might be causing it, but if the repeat test I got today still comes back high he wants me to go see a Hematologist. I looked it up myself and the possibilities of the causes are rather frightening… ranging from cancer to a terminal illness to kidney disease.  Needless to say I’ve been feeling rather anxious about it.

In addition, I’ve started tapering my Prednisone dose again post face drooping.  My neurological symptoms of my brain inflammation have been coming right back.  My tremor especially has been so bad I am having trouble doing simple tasks.  It’s so frustrating I just want to cry.

So this evening talking to Melissa, my caregiver, about it I broke down.  I’m so tired of it being one thing after another!  It’s two steps forward one three steps back.  So I decided to take a stand.  Literally.  I wanted to see how long if at all I could bare the joint pain I get while standing.

We turned my wheelchair around so I could use the back of it to hold myself up, and Melissa sat in the chair to help weigh it down so it wouldn’t tip.  Trembling I slowly pulled myself to my feet.  It was agony.  But I shifted my weight until I found a bearable “sweet spot”.  And then I stood there for a over a minute!

It was excruciating and exhausting.  I needed to lay down afterward and take some extra pain medication.  But the victory was well worth it!  I stood for longer than I’ve been able to in over a year! I showed my illness who is boss!

I still have high hopes that the Sjogren’s specialist I’m seeing on November 9th will have some new treatment options for me that will significantly help my joint pain and neurological symptoms.  But in the meantime, I will continue to take a stand against my illness.

For about 3 months I’ve been on a diet to try and loose the 150 pounds I’ve put on from the Prednisone.  I decided to do Take Shape For Life/Medifast because it seemed like a very safe diet as it is often doctor prescribed for weightloss.  Also my mom had done it and quickly loss the amount of weight she wanted to loose, and, when I had tasted the prepackaged food that makes up most of the diet, I really actually (and much to my suprise) liked it.

I didn’t really expect it to work at all with the Prednisone working against me.  But it really has!  Last time I was weighed (about a month ago in the hospital) I had lost about 20 pounds!  And as of today I am down 2 inches off my chest, 3 inches off my waist, 3 inches off my thighs, and 1 off my upper arms.

I haven’t been perfect (in full disclosure, I’ve been pretty bad this week with the Jewish holidays), but overall I’ve been very good.  It really helps that the bars taste like candy.

It’s not easy trying to loose weight when you are struggling with a chronic illness and constant pain.  Food can be a big comfort during such stressful times.  Especially when you have 25mg of Prednisone a day making you ravenous.  And it was so easy to blame the weight gain on the Prednisone and not take responsibility for it.  But deep down I felt really guilty about my weight.  Since I’ve started this diet, a lot of the guilt has gone away because I know I really am doing the best I can to loose the weight and keep from gaining more from the meds.  I still feel unhealthy though.  I also feel really unattractive and unlikable by the opposite sex at this weight.  I finally got motivated to try to loose some of the weight.  And though it won’t be easy… but when were things worth doing ever easy… I plan to eventually get back down to my 110 pounds self.

The other day I saw this site called Daily Mugshot and decided it would be the perfect way to track my weight-loss visually overtime.  So far I’ve only taken two pictures, but I’ll add a new one everyday.  Should be interesting to watch what happens!

Since I’ve been in a wheelchair, I’ve found it hard to feel feminine.  The chair itself is hardly girly with its plain black frame and shiny red plastic base.  But that isn’t the heart of the matter.  I’ve gained a ridiculous amount of weight from the prednisone I’ve had to be on for months and months now.   I’ve been having worse acne breakouts than I did in my teenage years.  I’ve lost my face, my figure, and my freedom.  And along the way I sort of let the things that made me feel feminine go by the wayside.

Lately I’ve been making a concerted effort to get my femininity back.  I started with a new haircut and highlights.  I was exhausted after spending 5 hours in the salon, but the results were worth the energy and cash.  I had done something strictly for myself.  Something that made me feel pretty again.  And that was something I had lost sight of.

I had stopped wearing makeup when I realized I was allergic to the yellow dye in all of the products I had used.  But next I decided I needed to make sure I was making an effort to feel girly when I left the house.  Getting new makeup was my next step.  I went to Bare Essentials and tried not to cringe as I spent the money necessary to wear makeup again.  They did my makeup for me there in the store, and I started to realize what I had let go.  And how easy it would be to get it back.  Sure, putting on makeup takes a lot of energy when I leave the house.  Energy I really don’t have to spare.  But it makes me feel so much more confident in myself that I smile more, chat with strangers more, and feel just a little bit prettier again.

With summer approaching, I’ve been sweltering in long jeans, but unwilling to show my hairy legs in shorter pants.  Shaving with a normal razor is just way way too energy intensive for me to be practical.  So again I made an investment in my femininity and purchased an electric razor (one with hypoallergenic gold blades and foil to boot).

But I didn’t have any clothes that fit my current body and would show off my freshly shaved legs.  With one pair of unattractive jeans and four barely tolerable shirts (all the same shirt actually in four different colors) making up my scant wardrobe, I knew it was time to take one more step towards feeling feminine again.  So this week I had my caretaker take me to Torrid (a trendy plus-size store) and I bought myself a cute new wardrobe – clothes that I would be happy purchase in any size and not just out of desperation and necessity as in the past.

And tonight I put it all together for the first time.  Legs shaved, hair freshly blown dry, makeup applied, and stylish in my new outfit, I felt like a well put together young woman for the first time since I’ve been in a wheelchair.  To celebrate my feminine transformation and reaffirmation, my caregiver (who is also my best friend) and I went out for Italian.  I had her take a picture before frankly exhausted (but completely content) I crawled back into my pjs and into bed.

And yes, all the time, money, and energy were well worth it.  Wheelchair or no, I feel like myself again.

It’s easy to believe that it is who you are inside that matters when you like the person you are on the outside.  I spent most of my life as a thin and able bodied person.  I was often told I was beautiful or that I looked like a model.  And though I enjoyed those compliments (what girl wouldn’t?), I never placed that much importance on my appearance.  But over the last year or so I’ve gone through major changes that have affected the way I perceive my body and myself, and the way I looked on the outside started to take on an increasing significance and meaning.

About a year ago I was put on Prednisone, a steroid my doctors hoped would get my autoimmune pancreatitis and other autoimmune diseases under control.  One of its many side effects was rapid weight gain that caused me to put on over 100 pounds during the last year.  In addition, my arthritis got so severe I was no longer able to put any weight on my joints which has left me to get around in a wheelchair.

In less than a year, I was dealing with two major body and life adjustments at once.  I no longer looked like myself when I looked in the mirror.  None of my clothes fit.  I went from a size 2 to a size 24.  In addition, I could no longer walk.  I greeted the world from belly button level, constantly looking up to make eye contact with everyone.

I no longer felt likable on the outside.  I felt unattractive and therefore unable to make a good first impression.  I expected people to treat me differently and unsurprisingly they did.  They seemed uncomfortable and unsure of how to deal with me.  And I felt ashamed of myself.  I dreaded running into anyone who knew me as I was before.  The only thing that seemed worse than being thought of as “the fat girl in the wheelchair” was to be thought of as “the fat girl in the wheelchair who used to be thin and able to walk”.

But as the months went by like this, I started to change how I saw myself.  Truthfully, it really started with buying myself new clothes that I liked despite the size on the tag and some new makeup to cover up the horrible acne I also developed from the Prednisone.  I decided it was worth trying to look the best I could despite the fact that I wouldn’t ever look the way I felt I should at the weight I was at.

And I started to adjust to life in a wheelchair as well.  I got used to looking up at people and needing help with difficult doors.  I found that a confident smile put people more quickly at ease with me than awkward averted glances.

One day I realized people were treating me normally again.  And then I realized that it wasn’t they who had changed at all.  I started seeing myself normally again.  I was being my normal funny, fun, intelligent, friendly self and people were just mirroring that right back.  I realized that the whole time people were treating me differently was because I was expecting them to.  Once I went back to expecting them to treat me like they always had, they did!

And now I realize just how important appearances are.  But it isn’t the way I used to think.  It isn’t what you physically look like at all.  It’s how you carry yourself and that image of yourself that you put out there for people to pick up on.  As long as I display to the world the confident, approachable person I am, I will be treated accordingly.  And that is something that no amount of side effects or wheelchairs or other life changes can take away from me.