ASK MY BED

28 09 2009

I’ve been feeling much more positive lately.  I’ve been getting great help for my severe depression through one of the inpatient hospital programs here in Los Angeles.  If I wasn’t in LA I honestly don’t feel I would be getting as much help.  My whole life fell to pieces in September of 2008.  My illnesses began to overpower my world.  I lost the ability to stay on top of everything.

RA still kicks my arse and my joints hate me when I forget to take my enbrel.   I even have reminders in my phone so that I don’t forget.  Pancreatitis is getting a little better because I’ve been making my lunch and taking it to the hospital program.  Now what I really need is time to look for a job.  I hired two people to help me with my taxes.  I can’t apply for disability without the past two years of them… and I am so behind – it’s pathetic.  I’m not sure how my whole life fell apart, but I think that I got so overwhelmed with everything that I couldn’t keep up anymore.  It was an evil combination of anxiety and depression.  Apparently, they both hit frequently together.  I fell behind on every single thing. I lost my self-esteem, my confidence, and any good thoughts I might have had.

I’m starting to put it all (my life and office) back together.  I’ve got some interns on top of my helpers.  In order to deal with my illnesses AND my office, I am forcing myself to nap halfway through the day.  I can’t keep up like they can.  I used to be able to work around the clock, but those days are gone.  I am starting to chip away at my newly diagnosed Diabetes type 2.  There are so many food limitations.  I am hoping that by easing one disease down that perhaps I will help out the RA or Lupus at the same time.

I’ve really enjoyed my reader letters lately.  Thank you so much for thinking of me and sending such nice messages.  I hope to return the favor someday by writing nice things back.

I’ve been thinking a lot lately about writing a book about my journey though these autoimmune diseases, but i’m not yet sure of the best angle.  Does anyone out there have suggestions of the types of books you would read on the topic?

My hand is in too much pain to keep typing.  Love you all, Sasha xoxo

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AUTOIMMUNE DISEASES GALORE (Part I)

27 05 2009

AUTOIMMUNE DISEASES GALORE (Part I)

Thank you to all of you wonderful readers out there who have sent the loveliest messages to me.  Encouraging words are  awesome, but knowing that behind each email, comment, or call that there’s someone who knows my physical and often my mental pain – that’s amazing.  As many of you would concur  – I would not wish the pain of RA, CP, or any pain of the heart on anyone.  

THE OVERVIEW

My heart and spirit are much lighter today then in many months.  Why the difference?  First, I was pulled off of Wellbutrin (an anti-depressant) and within 7 days my entire outlook felt brighter then it has since November (when I went on it).  I am glad i tried it out – I really did need to be on anti-depressants at the time… but I am shocked at how suicidal it eventually made me feel.  I broke all of the glass in my kitchen, cut up my arm really badly (on purpose), then cut up my legs and other arm when that didn’t seem to do the trick (not to die, but simply to cause myself that numbing pain that all cutters know so well).   It was a nightmare, but for the first time I see it was really a call for help.  I needed help so badly.  I was/am deeply lucky Jax (my ex-boyfriend and best friend) heard all the glass breaking because he came over and helped me clean up.  Then he called my parents and doctors.  Of course I feared he’d want to stay far as hell away from me after that but it’s had an odd effect I’ll write about in a minute.

So this is the state of things now:  I just got diagnosed with my 4th autoimmune disease: DIABETES!  I had pre-diabetes for the past year, but now it is full-blown diabetes.  This is the cause of my never-ending weight battle.  Now I’ll still have to work out 3-4 times a week, but at least I’ve begun moving the scale (and not just under the table).  So here’s my current autoiummune disease list: Rheumatoid Arthritis, Interstitial Cystitis, Hypothyroid, Diabetes 2 and then Chronic Pancreatitis. And I also have the tentative Lupus Dx sitting in the wings.  I always wonder if it all tied to Lupus.  Anyhow, the news did not shake me the way i would’ve thought.  Now I think it is all hysterical.  I mean, it’s literally gotten absurd.  (Read more about my personal life on this subject here)  I’m sure it’s all related in some way that modern medicine can’t decode. 

 

THE DEPRESSION/GETTING HELP

Now, about my severe depression.  I am feeling a lot better, but my Dr’s have told me it is very usual to fall into this trap AFTER the pain is finally under control.   Read the rest of this entry »





Traveling with RA Part2

16 09 2008

A wonderful reader emailed me about a followup to my “traveling with RA” and asked some key questions.

Dear Sasha, … I have a wheel chair of my own…I read on American Airlines website you can check it free of charge.  …Checking my own worries me. Also, I did not realize they could provide you with a chair.   Do I need to call the airlines ahead of time if I just want to use one of theirs? And do they let you use it until you actually board the plane? Oh, and thanks for the tip on the Enbrel Traveling case. I didn’t know about it either! I ordered one today, along with a travel sized Sharps container. I had no idea how I would manage that.  Will they search my bags for my medication? …I am probably worrying myself unnecessarily!  Thanks for your blog, it really does help. And I hope everything is going ok for you!
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MY RESPONSE:
• See Traveling with RA Part 1 for the full scoop and info on trolleys and much much more!
• Would you like to add to this travel list?  Simply send a comment and we’ll add it to our list.
• I’m a frequent flier not an expert so please do your own research.  Thanks!
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    • Be patient with security
    • Don’t be nervous – nervous causes anxiety which then turns into a short fuse, frustration, and forgetfulness. All these are a bad idea for traveling.
    • Medical Cards: I use the one from medtronics for my pump (CP) and also for Enbrel (RA).  They tell you that you don’t “need it” , but I’ve found that if I carry it out the whole time I go through security that I have an easier time of it.
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    • Read the airlines website for EACH airline you’ll be traveling on.  Be sure your medical containers are approved for travel.
    • Please do call the airlines to arrange for their wheelchair.  They can arrange it for you when you arrive, but then it is not 100% certain. Best to prepare properly.
    • Yes, they take you to the plane – not just the gate.
    • I’ve even had them help me seat by seat to get me on the plane from a wheelchair.
    • I prefer to go by wheelchair when I’m exhausted even if I was okay on the trip without my cane even.
    • Even without a wheelchair I have had an easy time of it since I am patient and don’t rush TSA or anyone.
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    • Don’t worry if they search you – it is part of the process. Let TSA do their job. I smile at them and say polite nice things.
    • In other words, don’t stress out –  if you have the proper ID cards for Enbrel or your pump you will be fine  (Plus, Enbrel comes with the travel case or can be ordered).
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    • Also, I pay the skycap guy $20 to take care of everything for me including getting the wheelchair.  I like this and it works well for me.  If you don’t tip them that big then they might have to send you to the inside counter and it isn’t worth it. They will carry everything and be very helpful.
    • You can usually bring a little bit bigger water for medical reasons if you’ve got a medical card.
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    • Resources: TSA (Security) Info about traveling with Special Needs/Medical Conditions
    • TSA Wait Time Calculator
    • Great general advice from TSA to get through security faster.
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    Thanks! Sasha xoxo