Having a chronic illness can rob you of your independence.  Suddenly you find yourself dependent on other people to do basic things you had always taken for granted, and this changes your relationships forever.

Before I got sick I was a super independent person.  I always preferred to do things on my own and avoided asking for help even when I really needed it.  With the onset of my autoimmune diseases, especially the neurological symptoms and symptoms that limited my mobility, asking for help became an unavoidable way of life.

Now I need help with even basic things like getting dressed or washing my hair – things I have done on my own for most of my life.  Those were the hardest things to ask for and accept help with at first.  It was frustrating for me and it was frustrating for my mom who initially found herself as my only caregiver.  Suddenly she was caring for me in a way she hadn’t needed to since I was a small child.  It tested our relationship.

At the time I felt very hurt at her frustration.  I wondered why she didn’t just automatically understand how much I had to humble myself to even ask for help in the first place.  It hurt when she responded with questions about whether I really needed the help or if I was feeling as badly as I was saying.  We fought a lot at a time when I really just needed her support.  Eventually I came to understand that I was failing to communicate.  I was also blinded by my own experience.  I was so caught up in dealing with the implications of a chronic illness and how it had shaken my world that I failed to see how profoundly it was affecting her as well.

But when I started to communicate this to her – that I knew how hard this was for her too  and that I appreciated all she was giving up to take care of me and that I knew it was also hard to watch her daughter get sick – the fighting tapered off.  I also found new ways to help her in return  that I could still do – mostly various types of computer and technical help.

When my mom simply couldn’t do it alone anymore, my need for help blessed me with two beautiful friendships in the form of two wonderful caregivers.  Sarina, my first caregiver, is more than a friend to me.  Born exactly one year apart, we say we are twins separated by a year at birth.  But it was odd at first having someone – a stranger – my age helping me with the very personal things I needed help with especially since I had been abandoned by several of my closest friends over the prior year.  They simply didn’t want deal with my new found illness and subsequent dependency.  Some stopped being my friend because they didn’t even believe I was actually sick and some of them just found it too much to handle and some I will never know their reasons.  In any case it hurt.  A lot.  But Sarina came in and loved me and accepted me and my illness.  She was truly a blessing and still is.

After Sarina moved away to further her career and get married, Melissa, my current caregiver, came into my life.  She is an angel in my life.  She, like Sarina, is always there for me.  We laugh a lot.  And through both of them I found that though I was sick I could still be a good friend in return.  I could still listen and be there for people.  I didn’t just need help from them, I could give it in return.

But at the end of the day I am still dependent on other people.  And I still hate that.  I don’t think I’ll ever not hate watching my mom or Melissa assemble my back backbreakingly heavy wheelchair.  I hate that I can’t just do it myself.  Though in a lot of ways, my relationships have grown and been strengthened by my need for help, and for that I am grateful, I am still eager to find ways to lessen my dependency.

So I am VERY pleased to announce that I’ve taken a step in the right direction – nine of them.  Last week  I walked (with the help of my walker) nine steps.  It was the first time I’ve walked in over a year!  I was having a low pain day and just went for it.  It was incredibly painful but even more incredibly worth it!

This post is my entry in February’s Health Activist Blog Carnival. If you’re interested in participating too, you can read all about it HERE.

I don’t really know what to write.  I’ve been kind of a writing funk.  More precisely the stress of everything it getting to me.  I’m in trouble financially, my doctors aren’t currently doing anything to help me get better, and I’ve been doing a lot of “being there” for my friends and family which I am more than happy to do – it’s just that its emotionally draining.

It’s so important to stay stress free when you have any chronic illness but especially one that’s autoimmune related.  High levels of stress lead to flareups of my illness.

Once upon a time I was a cutter.  Since then I have found other ways to de-stress that don’t involve hurting myself.  Now I have a little chocolate therapy on occasion (or rather frequently), I watch a favorite movie (usually The Princess Bride when I’m not feeling well), I talk to a friend or my sister about what’s bothering me, I scrapbook, or I force myself to write in this blog.  I’m feeling a little better already.

What do you do to de-stress when the road gets too bumpy?

A page from my Peace Book.

Sometimes things come crashing down emotionally.  I didn’t realize what an emotional toll being so ill in the hospital with a double kidney infection had until yesterday.  I didn’t let myself feel it in the midst of the crisis.  I guess I was in survival mode.  Literally.

But yesterday gave me a chance to reflect on it.  I was at my regular monthly appointment with my psychiatrist (who I absolutely adore), and he was asking me the normal questions about my physical health as it affects my mental health and everything just sort of hit me.  And I started to cry.  All the stress I had been burrying so I could make it through the hosptial stay and infection and 10 days of at home IV antibiotics came bubbling up to the surface.  I didn’t shed many tears because my illness, Sjogren’s Syndrome, damages my tear production… among other things.  And that made me cry harder.

And then finally dealing with my immediate past made me think about my immediate and not so immediate future.  And I cried because the future is so unknown and that is just plain scary.  This round of IV immunospupressants – Rituxan – doesn’t seem to have worked.  That is enough to make me cry in itself.  It is just so disappointing.  I am unsure what I should do next?  Should I risk suppressing my immune system further and more potentially dangerous infections like the one I’m just recovering from and get another round?  Will it even work?  Should I try something even stronger?  Or should I not take the risk and learn to accept my life as it is.  Is my new “normal” getting around in a wheelchair and being in pain and exhausted all the time with dibilitating and life threatening symptoms?  Is that how I’m going to be forever?  If this is how I am at 25, what will my life be like at 50?  Will I ever be independent again?  Will I need a caregiver forever?  And the scariest of all… how long is forever if I continue to be this sick?  Will I die from my autoimmune diseases and not with it?

But after crying this out of my system I realized I need a “new look” on many levels.  I can’t LIVE my life if I’m thinking this way all the time, so I don’t.  But I did need to get it out of my system once and a while.  The rest of the time I am thankful for what I still do have.  I am usually happy.  I have a wonderful caregiver in whom I’ve found a great friend as well.  I have the most wonderful and supportive community of online friends a girl could ask for.  I have a sister who does everything she’s able to support me.  A dog who loves give me cuddle therapy.  My writing, creativity, faith in myself, and most importantly HOPE!

I also got myself a “new look” in a more literal sense.  A new haircut and a new outfit.

Lately I’ve been gambling a lot.  No, not at the casino, but with my life.  My life, I’m realizing more and more, is a gamble.  I hope and I wish and I make educated decisions with risk analysis, but in the end I must simply roll the dice and see where they fall.

Recently, I took a big gamble with my health when i decided to try Rituxan for my various autoimmune diseases.  Like going all in on the last round of the night, I decided to take the chance that I might have devastating and even life threatening side effects for the chance to win big – for the chance to have more energy, to walk again, to be without pain, to be healthy again.

I’ve been fighting with my insurance company for months trying to get this extremely expensive treatment.  It’s essentially low dose chemotherapy.  It’s not cheap.  Not to mention dealing with doctor’s office mix ups with requesting the wrong medication.  Then trying to figure out where I was going to get the IV infusion.

So after months of problems, I was surprised to feel so nervous as the day of the infusion actually approached.  I was frankly terrified.  Terrified not only that I would be one of those very rare people who ends up with a horrible life altering side effect but also that I would end up exposed to Latex while there triggering a life threatening allergic reaction.

My mom and my caregiver Sarina both came with me on Wednesday to the infusion.  After considerable delay while they setup a Latex-free room for me to get the infusion, I somehow transferred from my wheelchair to the too high up exam table and tried to make myself comfortable.

The nurse was a pro and got the IV started without a problem despite my needle resistant and scar covered veins.  I brought my laptop with me and hopped onto some unsuspecting person’s unprotected wireless network and chatted with my friends online while the nurse gave me my premedication.

Things were going pretty well until shortly after she started the actual Rituxin.  I started feeling dizzy, sleepy, and was breathing shallowly.  My nails turned blue.  My mom, quick to advocate for me, requested they give me some oxygen.  Luckily that quickly made me feel much better.  My doctor popped his head in to check on me and  told me that I must be one of the lucky 3% who have breathing difficulties with the infusion.  Lucky me indeed.  The rest of the infusion went without incident.  I was worried that the breathing issues would persist after the infusion was over but fortunately a few minutes after the infusion finished my breathing returned to normal.

The next day (Thursday), however, I felt horrible.  I had the worst back pain of my life.  Right up there with double kidney infections.  I wondered if my gamble was going south.  But a quick call to the on call rheumatologist confirmed that I was having a bad reaction to the Rituxan, and he told me to bump up my dose of Prednisone significantly to calm everything down.

With the extra Prednisone and a lot of extra sleep I was feeling a lot better by yesterday.  Well enough that I took another gamble and dragged myself out of bed to see Up.  That was clearly a bad move because I feel awful again today.  But you can’t win every hand, right?

I won’t know for about two more months whether this gamble will pay off or not, and in the meantime I get to do another infusion on July 1st.  But I keep telling myself that as long as I get the big prize in the end, it will all be worth it.  Because most of life is a gamble.  You don’t know how things will turn out in the end.  There are risks to trying this Rituxan, but there are risks to not trying it as well.  So I made a choice when I decided to go ahead with the Rituxan.  I decided to roll the dice and hope that I’d like where they fell because I have my whole life ahead of me and I want it to be something worth risking for.  And well… I guess that’s a risk I decided I’m willing to take.

And with that I’m going to take another nap.

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.