Recovery Blues

December32010

The recovery process after a long hospitalization can be long, boring, and frankly difficult on so many levels.  Yes, I said after a long hospitalization.  I’m pleased to share I’ll have been home three weeks on Monday!  And while being home is an infinite improvement over being in the hospital, it raises new challenges, frustrations, and disappointments.

I’ve been very limited in what I’ve been able to do for myself due to pain and extreme fatigue and lack of endurance.  I have a long way to build back up, and I have to be patient.  But I don’t want to be patient right now.  Right now, just walking to the bathroom and back is enough to exhaust me.  But I fantasize about walking around my family’s Hanukkah party on Sunday.  If I am even up to going at all.  I didn’t make it to my family’s Thanksgiving.  Another big disappointment.

Being sick I’ve missed out on so many important events.  Holidays, birthdays, Bar and Bat Mitzvahs.  Laying in bed it’s sometimes hard not to feel like life is passing me by.    I’ve lost so much and given up so much.  A million tiny and not so tiny disappointments.  Too much to count or quantify. But each a pain that runs so deep it sometimes threatens to swallow me up.  But there’s also so many things I’ve gained.  I just hope that it balances out in the end.

Too Young: Invisible Illness and Pain

September132010

“Too young.”42-15653239

That is a phrase I have heard a lot in different contexts since I’ve been dealing with chronic illness.  I’ve been told I’m “too young to be this sick”, “too young to have to use a wheelchair”, and “too young to have to use a walker”.  Most recently I was told I’m “too young to increase my dose of pain meds” by my pain management specialist.

I went to my monthly pain management specialist appointment last week.  I’ve been having a lot more pain some days lately.  Stabbing pain in my joints that wake me from sleep and make me gasp in pain when I walk (but yes I’m still walking 99% of the time!).  I went to my appointment with the hope that I would get some relief.  But my doctor felt that I am “too young” to increase my pain meds.  I left feeling disappointed, a little angry, and still in pain.

On one hand I understand her concern.  If I have to keep increasing my pain meds now, what will I do in five, ten, or twenty years for my chronic pain?  What will I do if I end up in the hospital with an acute flare of Autoimmune Pancreatitis which is extremely painful and no pain meds will work anymore?

Chronic neuropathic pain

But on the other hand, I’m in pain now.  And despite what people what people might say, the unfortunate reality is that I’m not “too young” to be in this much pain.  And my age doesn’t make my pain any less painful or any less valid.  And my age especially doesn’t make my pain any less deserving of treatment.

Overall I’ve been happy with my pain specialist doctor.  I’m grateful that she is willing to prescribe me pain medication at all.  I went through several doctors before her who flat out refused to treat me because of my age.

The crux of the problem I think is that chronic pain is invisible.  No one can see my pain.  My pain specialist doctor certainly can’t.  Only I can feel it.  However, though my pain is invisible, I certainly am not.  And I cannot let my invisible pain (nor any of my other invisible illnesses) make me feel invisible.

Chronic Pain BarbieSo what do I do?

I need to speak up for myself and advocate for myself more.  I cannot let myself feel intimidated about telling my pain specialist that I disagree with her decisions.  If I shrink back and keep this to myself, I make myself invisible as my pain.

I also need to share my experience with the people in my life, so they can understand what I’m going through.  I’m not talking about whining about being in pain, but, in the appropriate settings, tell the people in my life what it feels like physically and emotionally to be in my shoes.  Part of that is this blog.  Sharing my journey on this blog helps me feel empowered and lets me make my invisible illness visible.

The bottom line is I am “too young” for just one thing… I am “too young” to let this beat me!

This week is Invisible Illness Awareness Week!  Nearly 1 in 2 people live w/ a chronic condition, most of them invisible. If it’s not you, it’s someone you love.  Help spread the word!



Scrapbooking My Illness Journey

August222010

You have to take the good with the bad. I subscribe to this philosophy not just when it comes to my life but also when it comes to my favorite hobby – scrapbooking. While going through my own pictures from the last several years, there were many pertaining to my illness. Hospital stays, doctors appointments, and so on. There was even a birthday I spent in the hospital.

At first I was hesitant to include these not so happy memories in my scrapbook. But I realized that these were experiences that I also wanted to remember. These bad times in my life are part of what makes me who I am. So I put them in.

Click to continue reading “Scrapbooking My Illness Journey”

Definitions: More Than Just a Novel Patient

August172010

There are many things that define me a Novel Patient, mainly my collection of unusual illnesses, symptoms and side effects. But one of them has nothing to do with being sick. If you recall last November, I started writing a novel. As I’ve been writing this novel I’ve been thinking lately about how I define myself. So much of my life revolves around and is affected by my illness that it can sometimes feel that that is all I am. But that is not how I want to be defined.

Click to continue reading “Definitions: More Than Just a Novel Patient”

Progress!

July112010

I’ve been home from the hospital for 45 days today I just realized, and I somehow managed to not blog once this whole time!  I feel terrible, and I hope I haven’t worried anyone!  But I’ve been very busy recovering and living my life.  A novel thing!

I’ve made tremendous progress the last 45 days!  I’ve gone from having a feeding tube to clear liquids to solids to totally normal food.  I started out practically confined to bed, but now I’ve been going out and walking around with my walker again.  I even got my PICC line out last week!  Things are looking up!

And since I’ve been feeling so much better, I’ve been able to enjoy a social life again for the first time in a long time.  It can be really hard to make friends when you debilitated with a chronic illness.  I’ve had very little to no social life for years.  Partly due to pain and lack of energy but also due to lack of friends.  But when I was Baptized back in March into The Church of Jesus Christ of Latter Day Saints, little did I know that I would suddenly find myself with as much social life as I had the energy to keep up with.  It’s been a great blessing!

In fact, I’m feeling so much better that I’m actually leaving to go out of town on Wednesday to ARGFest – a conference for the kind of online games I develop and play.  I will be going for 5 days, and I will be taking my caregiver with me to help me out.  I am super excited and thankful that I am well enough to go!

Now that’s what I call progress!

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