Friday, March 29, 2013

Back to the waiting game.

Hi all!  I have been delinquent yet again in blogging.  I'm not going to make excuses, but I will apologize.  I am sorry for not being more regular with the blogs.

Went to the VA yesterday for yet another follow up.  I'm considering just getting a cot and living there.  Firstly I want to give HUGE cudos to the Pain Management clinic.  They really should have never seen me as I was already in a maintenance plan, but my PCP sent me over there anyway.  The VA does not carry Butrans which is the synthetic Morphine patch I had been on since November so we had to do some trial and error.  They started me on the lowest dose, and it did nothing.  After several days in bed hoping that it would build up in my system and kick in I finally gave in and gave them a call.  The decision was made to up my dosage, but since driving the hour to the VA to pick up the script they not only sent me a new dose, but overnighted it to me.  The med/dose I am on now (Fentnyl) is not as good as the Butrans was, but it is what I will call and acceptable level of ok.  The Docs and support personnel at the Pain Clinic renewed my faith in the VA.  I still don't trust it on a whole, but they gave me some of the best care and were some of the most compassionate care providers I have ever been to.  Thank you!

I  headed on over to Dermatology after finishing with the Pain Management Clinic and they had canceled my appointment.  I should have known that was not a good sign about getting on Stelara, but the receptionist squeezed me in anyway. (Another great VA employee!)  Apparently the Biological Board has not met and won't be meeting for at least 2 more weeks.  The Derm resident was honest with me, and I appreciate that honesty.  She said "Don't hold you breath".  Her less than optimistic view was not about getting Stelara some day, but about getting it in time to get the initial loading doses before I was moving.  I guess that next treatment of hope will have to wait till I can get vetted and into the system at the Phoenix VA.  While driving home I realized that was probably a good thing.  I have been so desperate for some kind of hope for relief that I hadn't considered the possibility of adverse reactions.  If I had very bad side effects it could very well stop my move to Phoenix if not worse.  Better to wait.  Everything happens for a reason.

So there you have it.  I am back in a holding pattern.  This week is my last week of Short Term Disability and I am on another holding pattern for getting approved for Long Term Disability.  Hopefully that will resolve itself very soon.  My rent isn't going to pay itself.  I also have my Social Security medical exam next Friday.  Things are moving at their own sweet time, but they are moving.

Happy Good Friday and may you all have a beautiful and blessed Easter!!

Thursday, March 14, 2013

WOOHOO new drugs! (not so woohoo yet though)

Today I FINALLY got in to the Dermatology department to see about starting Stelara.  The Rheumatology had already recommended it, but because it is not approved for Psoriatic Arthritis the Derm is the one who has to prescribe it.  They are in agreement, BUT it has to go through an approval process with the "Biological board".  They have sent a message to the president of the board that we are under a bit of a time crunch due to my pending move and wanting to get the first 2 loading doses done before I move.  Fingers crossed I may have one last chance at a biological that might work.

If Stelara doesn't help I'm SOL (shit out of luck for those that aren't acronym versed).  It's the last option until the IL-17 drugs and a few others work through the approval process.  My understanding is that is at least 2 years away still.

I also saw the Pain Management Docs today.  Apparently the VA pharmacy does not carry Butrans.  Butrans is the weekly synthetic morphine patch I've been on since November.  It was helping quite a bit.  My pain had been at about a constant 8 even with taking vicodin all day every day, but with the Butrans it had been holding steady at around a 6 most days.  On bad days I was still able to take a vicodin, but it's reduced my vicodin intake to 1-2 doses a few days a week.  That is HUGE.  ANYWAY, now they have switched me to fentnyl.  I have never done it before so wasn't sure what to expect.  I put it on at about 4 this afternoon and I get to spend the next 24 hours or so while my nerves have their normal new med freak out.  It's kind of like when you get fever pains all over your body. UGH!  The good news is if it works then life goes on, if it doesn't it is enough evidence that I don't have other options so they will request that Butrans be added to the VA Pharmacy. I know, I'm high maintenance.

One last thing I'd like to mention is a thank you to a friend.  Thank you for being the only friend who has come by to spend time with me.  Thank you for being the one who reads my blogs.  And thank you for being the only one in a few months to make any contact with me.  I realize I have been out of the loop.  It has been a very hard 6 months, and it really means a lot that you have reached out.

Wednesday, March 13, 2013


As most of us know, stress is one of our biggest enemies when it comes to Psoriatic disease.  Whether you have only skin involvement or it has gone on to the arthritis phase, you can guarantee that stress will bring out the worst in your disease.

In the last few weeks I've been noticing some improvement in my skin.  I think the Simponi is finally working it's way out of my system and the Arava is fighting the good fight.  Though the psoriasis is continuing to spread to new and never before explored areas the severity of the scales and frequency of fissures is declining.  My fingernails have almost all grown completely back to full attachment.  I still have a few toenails hanging on for dear life and my pink and pointer finger on my right hand are not totally better, but everything is improved in the nail bed area.  I also have only had a few pustules on the soles of my feet in the last week and my hands are nearly totally healed.  I realize I'm tempting fate by announcing this, but it is what it is.

All that being said the last few weeks have had, and continue to have, a lot of familial stress.  I won't get into details because most of it is very private to other family members, but none the less it is stressful to be so far away while my family is going through struggles.  I fully expect a full on flare to be arriving in the next 48 hours.  My hips and knees have already started the all too familiar swelling with pain.  I also developed a new fissure on my left middle finger this evening that yesterday was just some minimal flaking.

Sometimes there is just no avoiding it, but it is especially important for immune responsive disease patients to learn good stress minimizing and coping techniques.  It can make the difference between having a short flare and becoming overwhelmed and trapped in a viscous cycle of the flare causing even more stress which then worsens the flare and so on.

Just as it is important for us to live the physically healthiest life possible it is important for us to take ownership of our mental health and well being as well.

I'm off to bed in hopes of getting some sleep tonight.  Thursday I FINALLY have my Dermatology appointment to see if Stelera is an option for me.  I'm leaning to waiting until I move to Phoenix to start it if it is an option as my move is about 60 days away and I don't want to find out I have a severe adverse reaction to it and be unable to focus on my move.  Sweet dreams and happy thoughts all!

Sunday, March 3, 2013

You now what I think...ahhh yeah... I wish I did too...

Oh the brain fog.  It's been running rampant in my life the last several weeks.  I've tried to blog several times and get so frustrated that I just quit.  When I try to research topics I can't focus.  When I start to write something I'll forget mid sentence what I was trying to say.  My words come out jumbled, repeated, and just confusing.  The brain fog has to be one of the most frustrating symptoms of many illnesses and side effects of many medications.

Mine is mostly a medication side effect.  I so find when I'm having a lot of fatigue even when I wasn't medicated the brain fog would be mild, but some of my meds have really exasperated that.  When I was on Remicade and a few other meds (honestly can't remember which combo now, but they were a DMARD and prescription NSAID) I'd get "lost" on the elevator at work.  Now maybe if the elevator was in a high rise it might make sense that you forget where you are going from floor 1 to floor 20, but our elevator was between floor 1 and floor 2.  I would get on, push the button and no more than close my eyes and forget where I was going.  I almost quit driving at that point because I would get lost on the 6 mile drive to work and my work is literally on the same street I live on.

Lately on bad days I do choose to just stay home.  I avoid cooking and doing anything that requires any kind of technical skill or dangerous tools like scissors.  These days require forcing myself to stay focused on even the smallest tasks.  Watching the clock so I remember to eat, having a step by step system for showering so I remember to rinse my hair if I wash it, or actually use soap, get money to put next to me as soon as I order food or be sure to only get food that I am eating right that minute so I don't have food out all day.  I don't do laundry because I'll forget and my clothes will be moldy by the time I remember it.  I don't go places because I'm afraid I will get lost.  I pretty much spend most of my day sleeping on the couch.

When you have always been a very studious person it is extremely frustrating to have the smallest things be a mental struggle.  I am lucky that my bad days aren't every day, but a few days a week is too many.  It is also hard for your friends and family to understand your change in ability to communicate, function and follow through.  They are used to you being prompt, verbally acute, and on the ball mentally.  It's just not happening anymore.  Your words don't come out right, if at all, in very basic conversation.

So many chronic illnesses have the brain fog involved.  If you have chronic illness (or take meds) that this wonderful frustration presents itself give yourself a break.  If you love someone who is experiencing it try to remember they are just as frustrated and more with it as you are.