Pump the brakes!!

I didn't post yesterday because I was going through a lot of mental turmoil over the chat with my Dr's assistant.  So here we go on that now that I have had time to digest and mellow a bit.

The Dr cut me off.  Yep, the Humira ride is at an end.  He wants to put me on something called Simponi.  I hadn't heard about it till a few months ago when he tried to get me on it and my insurance said  "Not gonna happen".  I'm not holding my breath that Blue Cross will change their opinion any time soon.  So back to square one.  UGH!

I had a feeling this was going to happen, but I hoped in some part of me that he'd let me keep going.  I also know that what was going on in my body wasn't a good sign.  It's really hard to have that glimmer of hope, even a minute one like the miraculously psoriasis free toe, and have it taken away.  It's similar to finding your dream job.  It's everything you've ever wanted to do in the field you actually love working in.  You get the call to schedule the phone interview, breeze through it with flying colors.  You get selected for a face to face interview.  You are down to you and one other person.  You pray, do some ritual dance, anything to give you some spiritual/cosmic edge.  They fly you to the place you would be working for a last interview.  More ritualistic gifts to God or whoever might be listening.  Then at the end of it you don't get the job.  TOTAL letdown!  Yes you'll survive, but the build up of the possible was intoxicating and dreamlike.

I had several other feelings last night beyond the grief of the loss of the dream. Anger, worry, fear, irritation, and general pissed offedness.  Looking in my fridge and seeing 2 sealed boxes of Humira also reminded me of the chunk of money not in my account anymore.  OHHH more waves of fury!  Anger at my body, anger at the system, anger that yet again I am let down by the wonders of science.  Fear that without something to help me I am going to be unable to work sooner rather than later.

Now I've had a night to digest and cool off. I'm no worse off than I was a month ago.  I'll deal with the grueling decline, and day to day surprise attacks my body springs on me.  I'll keep looking forward and finding something, anything every day that is good in my life.  There will always be something good to feel blessed about no matter how small it is.  If all else fails I always keep a decent bottle of wine in my pantry.

Information on Simponi.

And so roller coaster ride begins

Tomorrow is my day to take my second Humira shot.  I noticed this morning that my big toe miracle is becoming less miraculous.  There is a patch of psoriasis redeveloping.  My toe was so pretty for a few days there.  The psoriasis in other areas that were improving have started getting worse again as well.  I have started noticing some of those fun side effects as well.  My hair is falling out.  I have been blessed with really thick hair, but it is still disturbing to pull out hand fulls of hair when I washed my hair this morning.  I also feel like I have been eating glass.  My mouth feels raw, similar to having eaten pizza when it's too hot, but all over my gums, tongue, and the flesh inside my mouth.  Luckily it's not ugly cold sores though.  I have a few spots that feel like blisters in my mouth, but I can't see them.  Then there's the insomnia.  Being a long time insomniac it's hard to say if this particular rearing of the ugly head of sleeplessness is a side effect of the meds or just the occasional bout that I have every few months.  It's hard to overlook the timing though.  It also seems like I have to pee a lot.  When I finally do fall asleep I feel like I'm up every hour for a trip to the throne.  I have diabetes in my family so when I first started noticing the frequent urge to pee I went to get my blood sugar tested and it was A OK so it's not likely I've developed the family curse, at least not yet. On top of all that I haven't noticed any improvement in my joint pain.  If anything it's worse.  That in itself isn't unexpected.  All the other immuno suppressors have caused me a flare after I started them.  Remicade made me flare every time I got an infusion the whole 5 years I was on it.  It is just pretty hard to see the light at the end of the tunnel when the great miracle is fading and I am in constant pain.

Oh the fun roller coaster of drug side effects.  I'll be calling the Rheumatologist tomorrow to see if I should take my shot or hold off.  I will be pretty pissed if I can't use the $2500 worth of medicine that is residing in my fridge.  Plus I'll be pretty irritable that I've been abstaining from my Jack Daniels and Diet Coke enjoyment for over a month now.  After not drinking for the better part of 5 years besides on special occasions I've come to enjoy my adult beverages a few times a week, and I kind of miss the whole experience of it.  Even a glass of wine at dinner would nice, but to give this medication a fair shake and not take any chances of causing more damage to my liver I've abstained since I decided to give Humira a try.

OK I think I'm done with my little pity party for now.  Today's positive note is that Wednesdays is vagina night!  I got to spend the evening with my closest girlfriends.  I missed last week thanks to the attack of the file moving episode.  I have some amazing friends.  The core group of 5 of us span 2 decades in age, but share 8+ years of companionship, ups downs, fun, sadness, and have made a commitment to spend time together almost every week.  So happy Vagina night!  If you have a vagina I hope you are blessed with other special vaginas to share your life with.  Nothing compares to good girlfriends except for maybe good girlfriends drinking wine.