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.

Right now I’m waiting for some extra pain meds to kick in.  I’m trying to tapper my Prednisone dose down from 25mg a day to 20.   It doesn’t seem to be going well.  After dinner that telltale Autoimmune Pancreatitis pain started up for the first time since I was in the hospital last.  Not good.  I’ve also been running low grade fevers in the afternoons.  I suppose I’ll be putting in a call to my Rheumatologist tomorrow.

I also need to call my Internist for an appointment to check out what seems suspiciously like a sinus infection.

And I have a handful of other medical related calls to make (including some especially dreaded ones to my insurance company).  It’s enough to make me want to go hide under the covers and go back to sleep.

I always tell people that you have to be your own advocate, but it can be downright exhausting under the best of circumstances let alone when you are sick.

But I, like so many others, don’t have anyone else to do it for me.  So I have to be my own advocate.  I have to stay on top of these phone calls and appointments and lab results and new symptoms.  But lately it just wears me down and out.  It’s a lot of stress and a lot of effort.  Mentally and emotionally.  It’s all in the details, and so much is at stake.

It shouldn’t be this way though.  When people are sick they should be able to just focus on getting better and not navigating through medical bureaucracy and red tape.  It scares me to wonder what would happen if I became completely to ill to do it for myself.  Who would advocate for me then?  There are so many people already in that very situation.  I shudder to think what kind of care they are getting.

There must be a better way.

In the meantime, I do what I have to do regardless of the brain fog making it hard to think straight and the fatigue making it hard to keep my eyes open.  Because I’ve learned that even though being a professional patient is a full time job, you don’t ever get to call in sick.

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!

Being chronically ill it’s hard to have the energy to get through the essentials of day to day life.  Organization can fall by the wayside. But staying organized is one of the most important things I’ve done to help myself cope with my chronic illness.  Getting organized about my illness has helped me make my illness more manageable and even helped me get more out of my doctor’s appointments.  Over the years I’ve developed an essential tool set.

1. If you suffer from brainfog like me, it is crucial to write everything down.  And I mean everything.
2. If you have an important phone call to make take notes both before hand of what you are going to say and during/after of what was said.
3. Keep a symptom and pain diary, so when you doctor asks when symptoms started and how often they occur you have a concrete answer.
4. Keep a calendar of all your doctor’s appointments.  Schedule them as early as possible to get the best from your doctor.  When your doctor isn’t running late and still has energy in the beginning of the day he will spend more and quality time with you.
5. Doctor’s appointments can be stressful and it can be hard to remember what you were going to say and what was said.
   • Prepare for your doctor’s appointment by making a list of recent symptoms and questions for your doctor.  Make a copy to give to the doctor so he or she can follow along.
   • Bring a list of medications to give to your doctor.  You can use the one I made at the end of this post or make your own.
   • Keep copies of all of your medical records and bring them with you when you go to a new doctor.  This can save you from getting tests twice and help you get diagnosed if something was missed by another doctor.
   • Make sure you bring a notebook and pen to take notes of what your doctor is telling you at the appointment itself, so you won’t get confused or forget something important afterward.  (To take notes you can get a good old fashion notebook to dedicate to your health.  There’s computer software you can use to take notes.)
6. Make to-do lists as you think of things you need to do.  Whether its schedule a doctor’s appointment or refilling a prescription write it down when you think of it.  And then feel the sense of accomplishment when you cross it off your list.
7. If you have a lot of medications it can be hard to keep track of when to take what and even if you took them yet at all.  Make a schedule of your medications and check them off.  You can even get weekly pill cases and do them all in advance.  Try using my medication schedule at the end of this post if you don’t want to make your own.
8. Making lists of things you need to do or when you need to take your medication is great, but it’s useless if you don’t remember to check your lists.  The solution?  Set reminders.  Set alarms on your phone or a watch with multiple alarms or on your computer.
9. Be prepared for emergencies.  If you have a condition that requires you carry Emergency medical information on you at all times make sure it is kept up to date.  Keep an up to date medicine list on you at all times.
10. Ask for help!  When your sick you can’t do it all alone.  Ask your friends and family to help you when you need it.

Do you have your own tips to add?  Please leave them in the comments!

Files

Allergies and Medication List

Word File

Pages File

GoogleDocs

Medication Schedule

Excel File

Numbers File

GoogleDocs

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.