I’m Daddy’s little girl all grown up, but I still need my daddy.  I want to bask in his strong embrace.  Instead he gives my heart a chase.  He pushes me away into the wrong kind of space.

My dad and I hold polar opposite believes when it comes to the treatment of medicine.  I believe in studies and the scientific method.  He believes in testimonials and isolated case reports.  But that it is neither here nor there. In our differential beliefs we are at in impasse.  And no matter how I beg and plead I can’t get him to respect my wishes.

I even tried a different tact.  I recently agreed that once I am recovered from this current hospitalization I would agree to spend two sessions with an alternativie medicine worker of his choice and fully hear them out and what they think I should do for my health.  But then, my dad went the very next day against my will and set up a consultation between an alternative medicine doctor out of state and my current internist.  This is only one recent example of what has gone on over the years as I have struggled to find my path to health and he as struggled to get me to follow a completely different path.

Feelings are hurt, boundaries has been crossed, trust has been broken.  I am left unsure if I want him in my life at all right now.  As much as it would hurt to cut him out when I need his support the most, he doesn’t seem capable of giving me the support I need anyway.  So much trust has been broken.  I just want him to hold me and tell me it it will all be okay.  Instead he hold me at arms length and tells me what I’m dong wrong.

And the stress from this has been tremendous.  I can’t stop crying.  Between the being sick itself (34 total days in the hospital and counting) and the fear of the great unknown – all we really know so far is that my problem is with some kind of inflammation in the brain stem – it might be MS (multiple sclerosis) or something like it.  And then there’s my dad making it worse.  Telling me the treatment I’m choosing for myself is going to kill me.  He needs to respect that its my body and my choice and he just can’t for whatever issues he has gong n his inner psyche.

So in the meantime…  I will get by without him.

EDITED: to include clarification about my willingness to see certain alternative medicine practictioners.

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