28 10 2008

If you’ve been reading any of my posts the past 5 weeks then you’ll know that I’ve been severely depressed. I’ve also been looking for work because all of my clients and company work literally dried up the minute the economy started to become terribly worrisome.  All my company contacts have told me that they are being forced to scale back and no longer use contractors.  This is one of the toughest times I have ever gone through that is non-medical. In addition, the love of my life, Jax, split up with me because he could no longer deal with the stresses in my life and he moved next door (one apartment in between) to my old office so he could work on himself.  We had our business together so all this week we’ve been working towards pulling it apart in an organized manner.

On top of this, I take a very low dose of Cymbalta, which is used to treat pain in my case…but I am not on an antidepressant.  (I still get those shocking jolts from Cymbalta).  Tomorrow at the Dr. office I am going to ask for the first time in my life to go on one.  I am a painter on the side and I never wanted to take antidepressants.  I’ve always been afraid it would ruin my creative abilities and urges…but now it has become a matter of life or destruction.  I would never harm myself intentionally, but all my close friends and family know that I injure myself very badly through thought alone.  My health can not hold up under such depressing news on so many fronts. Plus i can’t sleep. I have horrific insomnia and keep sleepwalking although ive not yet heard of anyone else sleepwalking due to enbrel.

I keep falling asleep outside in the chair which has made my RA rage out of control.  I can barely walk again (and will need to use the cane tomorrow) and am looking forward to getting my new shipment of Enbrel in.  My legs and feet are so swollen and I have to take vivarin to stay awake because my body clock has become so tuned in to night hours when I spend 8 hours or ore applying to jobs.

Do you remember the old movie SINGLES?  remember the guy who loses his job and girlfriend so he locks himself up in his apartment and eats crappy food and his place is a dump until somehow he finally gets his life in order?  Well, I’m him right now, but still locked in the apartment mode.  I’m waiting for interviews and hoping something breaks through!!

Finally,the good news is that i started Weight Watchers.  i am not like the lucky people who have taken steroids/prednisone and were able to quickly lose the weight.  For me, the steroids turned OFF my thyroid (I now have hypothyroid) and made it impossible to prevent 45 pounds of weight gain.  I was 130-135 and am now 176!!!  I’ll update my blog each week about my status – My first goal is to go down to 158 puonds which is 10% of my current weight. I am going to Weight Watchers meetings this time with some good friends and I plan on really doing it this time. It’s been exactly 1 year since I started taking steroids.

Thank you for your sweet comments about getting through this dark time.  I do want to write one Jax update.  This past weekend I came to a breaking point where I realized that I need to remove myself from his space.  We were spending a lot of time together even though he broke up with me.  I was loving it – but the times in between were far too painful.  (I just heard a gun go off… oh Hollywood can be so nasty).  A friend told me it was killing me.  So now I have told Jax that I could no longer see him ever again.  I planned on making this true, but much easier said than done. My birthday is this weekend as is Halloween and we’re going to go with friends to the parade here in Hollywood.  Maybe that’s the end of it.  I need to stop having Jax in my life for a bit, but I also don’t want to.  He helped me so much/  It’s so tough to go back to living alone.

Being this depressed absolutely affects my pain level for pancreatitis (CP).  I just have to manage it better.

Love,  Sasha xoxoxoxo


Traveling with Enbrel and a Pump

21 08 2008

my left foot is swollen today. my brain feels swollen with a rough headache. i just got home from my long work trip. I’m just exhausted. it has been an amazing experience but nowhere close to being over. I could tell you loads about the trip and the journey, missing my Jax, my house, my own dust and grime – rather than the hotels…but instead I’ve decided to tell you that the medical companies try to put so much fear into people about traveling with Enbrel – but don’t believe the hype. As a small side note to be regular readers – I believe I have lost a ton of weight on my trip, but I am too afraid to weigh myself. Has that ever happened to you? It’s been 8 months off of steroids – but it still affects my body in a negative way. I hate that prednisone and I will never believe a doctor again who says there is no alternative. It just is not simply true in my non-medical opinion. There’s always another path… Steroids are just so easy to tell a patient to take… we all want instant results from our pain and that is what it offers… but it is not worth it!!!

Now, on the the flying routine: I fly so frequently that soon I will have a chair named after me. My trips are long so it requires me to bring a large stash of meds, enbrel, used needle carrier and to prepare months in advance with Dr appointments, intrathecal pump refills, plus stuff packed away for any type of emergency.

On this trip I tried to order Enbrel this way: 1box for the hotel and 1 box for my house. They told me that the insurance had to be filed as an “away” stay and that I would need to call them and on and on… BUT my life is far too complex to waste time dealing with BS. So I was frightened but I ordered all the Enbrel for my hotel. I always stay at a hotel with a fridge in the room. For me it is mandatory due to meds, food diet, and general level of well being.

The “specialty” (pain in the ass) phone pharmacy told me that they were worried about me traveling with the needles on the flight. I have now done it at least 6 times and I am no longer worried at all. You have to be prepared to be fully searched – which I fully expect every time. If you go into the airport thinking you should glide through then you are going to have a BAD DAY. I don’t even mind security. I make jokes to myself about the delightfully lesbian guards. They each have their own style of hand-searching me. (I refuse to go through the metal detector with my pump – REFUSE… they would have to drag me through it themselves after searching my anal region to get me to do it – there’s morphine in my pump and I refuse to mess around with those kinds of electronics. So traveling with a pump is easy for me as long as you have your medical card.

But for RA I’ve found that as long as you look secure in your plan then you’ll be totally fine. I put my enbrel in my travel pack with the 3 ice packs they provided. I have the Enbrel card in that travel kit that I have had to show to lower level TSA. But higher level TSA don’t even blink and wave you by. They’ve seen it all before. Also: did you know that you CAN bring water on if you cite medical reasons? it only works with a medical card like the one in the Enbrel case or my Pump card – laminate it first – it makes it seem more official.

Before i had my pump for CP I was facing the need to fly with an IV tower for a full year. I was going to have a stomach tube put in for a whole year! What a major non-workable scenario. Luckily my Shrink told my medical doctor not to do it- she was terrified I would kill myself as a result because she wrote “this patient loves working and the need for the IV tower would remove that ability. I urge you not to perform the J-Tube procedure”.

Back to traveling… When my RA is bad I always ask for a wheelchair at skycap. I don’t mess around – this way I won’t miss my flight. Also, it is handy to give skycap $20 right away – they are happy and will take care of you in front of anyone if you need. They completely take care of the luggage no questions asked.

Take my advice. Make your life easy use these steps for airport ease:

(Also read more blog updates about my life with RA and pancreatitis on this site)

RA=Rheumatoid Arthritis CP= Chronic Pancreatitis

  1. RA – Get Enbrel Travel kit from pharmacy or pharmaceutical
  2. RA – put your enbrel on ice in the cooler pack
  3. RA- Only take as much enbrel as needed for trip + 1 extra in case of delays
  4. RA-Keep Enbrel in smaller box-it protects it best
  5. RA – defrost ice pack fully 2 days before return trip (if none left)
  6. RA – Laminate all medical cards
  7. Always travel with health insurance card
  8. Check your out-of state coverage. Some companies like mine hate to pay you back for outta state ER visits.
  9. CP/Possibly RA: Don’t bother with metal detector. It is your right for a hand search. You get treated better, often faster, and easier if you are a slow poke like me.
  10. Be mentally prepared to spend time in security. You have special needs – get over it. Let them do their job and mellow out.
  11. RA – if it is a bad RA day simply ask for a wheelchair or bring your cane and ask for help. No reason to miss your flight because you are limping so badly like me
  12. Commit to the Cart – Once I started walking and got bored of waiting for the cart. HUGE mistake – they refused to pick me up later and said “you can walk” even though I was limping like a dead horse… don’t refuse the cart wait if you need it – you can only guarantee it at the gate and entrance at certain airports IF you ordered it ahead of time.
  13. SKYCAP/ $20 = joy. Forget the painful wait and agony. Just pull out the 20 and get over your complaining. Your pain will be so happy you did.
  14. Long flights are an entirely different story. You MUST walk around the plane many times so that your legs and feet are not giant balloons. This takes effort and an aisle seat
  15. Say “No” to IV towersI know there are more but I am still exhausted from my trip so I’m going to go back to work.
  16. love,
  17. Sasha xoxoxox

Steroids Strike Again

18 05 2008

Believe me, I have much better things to do with my life then complain about my weight and kvetch about doctors…I mean I run a company and could barely stay awake long enough this week to sign everyone’s paychecks! What a train wreck! I have 2 days of to-do’s completely un-done. I’m crushed. How can I keep my career going at this rate?

This week my pain management doc had a “private” meeting with me (he sent Jax out of the room which is very unusual..never been done). He told me how he is worried that I’ve been gaining so much weight. In fact, I haven’t gained any weight since January, but I’m not sure if he understood that. It was very painful mentally. Facing the facts that I am fat is impossible! I’ve never been this blubbery my whole life and I am not dealing with it well. The last thing I want to do is give a report about my non-decreasing weight and my inability to get anything done… I know Jax doesn’t want to hear about it.. but there is news from the front lines of my doctor’s offices. I finally couldn’t deal with the extreme exhaustion anymore and i mentioned it to my RA doc… I am still not a fan of his (he’s new as of January) and I’ve not yet been able to win him over. I told him about my inability to get ANYTHING done except for 1 day this week… and he said it could be my weight… That’s when you just say HUH?!?!?! Jax calmed me down from freaking out that my doctor told me I’ve become fat.

I was 132lbs from 18 years old-35 years old. It’s only been the past 5 months since my 35th birthday that I was put on steroids and then gained weight… I wish I had gotten on Weight Watchers the second I starting taking steroids! Now I’m 174lbs and can’t lose weight for the life of me. I eat almost nothing. The food I’m eating is all weight watchers approved. I should technically be losing weight according to the Weight Watcher’s calculator. Also, I started working out again, yet I can’t stop gaining weight. I’ve actually been working out each body part with a DVD rental new per week from Netflix. I actually think it is a great motivation to workout! I’ve been guzzling water and doing the right things but still I gain (or at least never lose) weight. There was a moment when I rejoiced for losing 1.5lbs… but that is not enough to even be real.

About the same time I started taking steroids I’ve had the following symptoms: extreme exhaustion (part of

RA symptom), some hair falling out, weight gain, and freezing cold hands/feet even when i am boiling up. I asked the doc if it could be anything else besides RA but no one would listen. Finally, on Friday I called the doc after my bloodwork came in and turns out that I have hypothyroid. (Link to webmd site on hypothyroid). I have every symptom but again it’s masked as RA. The RA doc said {CLICK HERE TO READ ON ABOUT THE SOLUTION, PREDNISONE, and CP}…HERE –>

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