Cimzia day ONE

I'm now 24 hours into starting Cimzia. It was approved for PsA last September. The Nurse Practitioner who is my assigned provider at the Rheumatology clinic at the VA decided it was the only option, but my Dermatologist doesn't feel there's a high likelihood of success with my failures on Remicade, Humira, Enbrel, and Simponi due to Cimzia using the same basis for combating my hyper active immune system. 

So far no major side effects. Some nausea, mild headaches and minor all over joint irritation. I noticed I had some skin irritation on my forehead and temples this evening,  but that could be my monthly cycle even though it's not my typical pms pimple attack location.  So far in comparison to side effects from the other biologicals I've been on I'd say it's a 2 of 10. IF I have joint and skin or even just joint improvement without more side effects developing or worsening I'd say it's totally worth the minor irritation.

One thing to mention is that the script I got is the prefilled syringes. The needle guage is larger than others I've experienced. This means it is harder to puncture the skin and left me with more bruising than I usually experience. Again not a deal breaker, but something to be aware of. 

Overall so far so good. I'll keep you all updated!!

In other news I'm freezing my ass off in TX. My winter psoriasis flare is NOT happy with me.

Prayers and blessings!

Heather

I've felt like a slug for the last 2 weeks.

I'm sorry for not posting the last few weeks.  I went to Baton Rouge to visit my oldest daughter for Thanksgiving.  It was a wonderful visit and I was actually feeling pretty good besides fatigue.  Then came my Simponi shot.  I waited till I came home from my trip to take it so I wouldn't have to deal with side effects while on the road.  I'm so glad I did.  I had a lot of dizziness and nausea almost immediately.  Within 2 days my skin and joints started to flare.  My joints seem to have leveled out, but my skin has been in constant flare every since.  It has gotten to the point that I need to wear long sleeves and long pants to bed because my skin will crack while I am sleeping and bleed.  I went to get blood work done last week for my appointment this Thursday and the nurse said my skin was probably the worst she's seen on anyone in a long time.  On top of that my fatigue has been even worse than my new norm.  So in conclusion my last 2 weeks have been generally crappy.

I have decided I will no longer be taking Simponi.  I believe that the combo of Arava and Butrans is helping my skin and inflammation significantly.  I will accept the need to take 2-4 naps a day if it means that my pain levels and arthritis flares are what I consider bearable.  I don't believe I am employable still.  I have so many issues with fatigue that I couldn't make it through a work day.  I also still do have mobility and dexterity issues that make doing even clerical tasks painful and impossible most days.

So there you have the last 2 weeks and my excuse for not keeping up with my blog.  I will try to do better.  My oldest daughter is coming home Friday and we will be leaving for Phoenix to spend the holidays with my family. I can't wait to get there.  I miss my family every day and I feel SO much better when I am there physically.

My hand in Psoriasis flare.  You can also see the sausagey swelling in this picture.

Itch Itch Itch...

Last week I thought my skin was getting better.  Tonight, I'm not so sure.  I have to admit that since starting Butrans and Arava I am feeling better overall.  I do need 1-3 naps a day and that is with getting a good 7 hours of sleep at night.  However my pain level is now what I would call livable.  The pain isn't gone by any means, but most of the time it's at a level of annoyance.  I do still need to take a vicodin every few days, but I was taking 2-3 a day most days before the Butrans.  That is a notable improvement in my book.  I also notice my brain is a bit more scattered.  That is probably the Butrans since it is giving me a steady dose of a synthetic morphine all day every day.  ANYWAY back to the skin.  My hands were looking SO much better.  Still scaly, but no splitting or bleeding.  The scales were also less thick on most places I have scales.  Today though I noticed the scales are getting worse again.  My hands, scalp, feet, and ears are feeling like I've got hives, but no such luck.  It's just psoriasis.

I have my Simponi shot next week.  I am not holding out much hope that it is going to do anything at this point.  I've accepted that I won't be returning to work, and honestly with the Butrans lowering my pain levels, at least I can have a level of comfort I haven't had in over a year while I'm not working.

SO now it's time to practice what I preach and do some occlusion, limit my internal stress, and find some external focus.  I think I'll be doing a lot of reading about the disability system.  If only I can stay awake long enough to get through it.

How can more naps be bad???

I think the novel is going to have to wait.  I'm having a lot of brain fog since starting Butrans and Arava.  Every time I try to write I catch myself doing that head bob nod that you do when you are falling asleep at work.  I just can't sit down and write for hours or even an hour.  This blog is about as lengthy as I can get, and even that is hard to concentrate on this morning.  I am having a lot less pain.  I'd call it "functional" pain, however I am having a lot more fatigue.  Monday and yesterday I needed 2 naps to function.  With the time change I am getting up just after 7, but by 9:30 I'm exhausted so it's time for my morning nap.  30 minutes and I'm ready to get going again.  Then in the afternoon around 4 I'm exhausted again so yet another 30 minute nap.  Keep in mind this is not from doing anything high energy.  Monday I worked on crafts.  There was quite a bit of coloring between naps.  Tuesday I did some shredding, sorting and filing.  Today is laundry day, and I got up, had breakfast, did 2 loads of laundry, showered, and I was worn out.  NAP TIME!

I really like naps, but it is still kind of frustrating.  My pain seems to be under control (this week) but I'm too tired to function.  I'd be glad to keep my pain at the level it is now, but I still won't be able to work.  I can't focus, can't stay awake, have no energy, and still have limited strength and dexterity in my hands.

Oh well.  I'm still giving this till December before I file for Disability.  I'm still pretty resigned to the fact that I will probably be filing for Disability.  For now I'm OK with the fact that I'm swapping some pain for needing more naps.  Who doesn't love naps???

Yank my joints out all "predator style" and stuff

^^I was feeling like this last night and for those unaware this is a "Predator"^^

Today it’s been 4 weeks since I've worked full time.  I still haven't gotten into any kind of schedule, but a few things are getting there.  Tuesdays are my grocery day if I’m not having a flare affecting my feet or knees.  Fridays is my go out to lunch day, again pending knee foot issues.  I love banh mi sandwiches from my local pho shop so I've been having lunch there every Friday.   They have great food and are happy that the white girl likes Vietnamese style coffee. 

I’m a planner and like structure in my life so I still feel like I need more of a schedule.  I had hoped that with less stress and more sleep my illness would improve, but the reality is if anything it’s worse.  I went yesterday about the breathing issues I had been experiencing, and since quitting smoking (yes I do have a drag here and there when I’m out with Mickey)my lungs are actually stronger and better looking than they have been in years.  I had clear lungs, the xray was clear, 98% O2 levels, EKG was good and high end of normal on the lung capacity test.  The decision has been made to send me to a cardiologist just to be on the safe side.  I told the Dr that my pain is constant so he prescribed me a Butrans patch.  It is supposed to be less powerful than Fentanyl, and I will be able to take vicodin on days when I am in REALLY bad pain(HA, that’s every day lately), but should give me more constant relief  with a steady stream of narcotic in my system.  He also cleared me to start taking Arava.  So I got home feeling a bit dejected with all the lack of any news good or bad.  I mean I don't want bad news, but at least with bad news there’s a direction to go in.  Anyway I slapped my patch discreetly above my voluptuous butt bump, and downed a Arava pill.  About an hour later my system had a rebellion.  I’ve experienced these feelings before when I was on Remicade.  It is like every nerve in your body has little needles and anywhere your body is touching anything is getting needled, also every joint has a sudden flare so there isn’t a bad joint, they all hurt like hell and then comes the fever.  With Remicade I would leave the Dr’s office after my infusion and get home, crawl up in the fetal position, and moan myself to sleep.  This reaction has no “fatigue” at all.  If anything I’m hopped up and zooming.  I figured since I was going to be in this torture at home or out I would go try to play poker.  The hope being that some social interaction would give me some distraction.  Also besides the grocery store, Dr, and 3 hours at Urban Crust I really hadn’t left the house since Sunday morning. It was time to get out and be social.  I sucked at poker as usual, and stayed a bit to spend a little time with the boyfriend, but by 9 I was ready to go home and resume the fetal position with crying added to the ritual.  I really wished I could remove all my joints “predator” style (You’d have to see the movie to get it).

Upon waking this morning I do feel better.  I’m not sure if the Arava or the Butrans was the reason for the reaction.  I took the Arava this morning and not having the extreme reaction of yesterday.  I am still pretty flared up everywhere, but the fever and nerve pain has stopped.  I won't know which it was till I change the Butrans patch next week, and may never know for sure which caused it.  My bet’s on Arava since it was SO similar to my Remicade reaction.  You have to remember when you have these immune diseases that are your immune system over working that they are going to react to medications designed to suppress them just as they would a virus.  Having an initial reaction to DMaRDS and Biologicals or even a recurring reaction like I did with Remicade is not unusual or unexpected.  It does suck and it is your and your doctors call if these reactions are livable or not life threatening.  On Remicade I’d still tell you I’d gladly give up 1 day out of 30 to function and even excel the other 29 and I’d do it without a second thought. 

So there you have yet another ride on the side effect roller coaster.  I’m going to finish eating my sandwich, egg roll and Vietnamese style iced coffee and get to work on my novel I was supposed to start yesterday.  I’m now 4000 words behind.  As you can tell I’m a bit long winded so that shouldn’t really be a problem.  See y’all soon!

 No idea what's going on here, but this came up in the Predator movie google search.  I say you go Danny Glover!  If I'd just survived what you did in both Predator and putting up with Mel Gibson in 3 Lethal Weapon movies I'd think about giving the other team a trial run before the world ended.

I just need to breathe

I am not sure if I have a new side effect or something else wrong with me, I mean something NEW wrong with me.  I've noticed the last 2-3 months that I occasionally feel like I need to take a deep breath.  It wasn't all the time or even frequent necessarily.  It was happening maybe 2-3 times a day I'd feel like I needed an extra deep breath.  Friday it started getting worse.  It was bad enough that the boyfriend has become concerned.  I did some research, and this could be a side effect from 2 of the meds I'm on, the Simponi and the vicodin.  I also stumbled across a article on the Internet that talked about psoriatic arthritis being shown to cause inflammation in organs including the lungs.  I really hope I have a reaction to the Simponi or vicodin. I'll be calling the Dr tomorrow to see if he can get me in this week.  Just so my friends and family don't panic when they read this, I am not sitting here gasping for air suffering.  It is still fairly sporadic  but it is becoming a much more frequent occurrence and something I need to get checked out.  It really sucks I have gone to the effort to quit smoking and NOW I can't breathe.  What is funny is that I actually am breathing better most the time.  I'm not always congested and coughing up crap. So I'll be calling Dr. Lavery tomorrow.  I'm still waiting to hear about my Hepatitis screening from over a week ago so I can get those results then too.

So there you have it.  Possibly another side effect.  Simponi really hasn't done a damn thing for me so being told I need to stop it wouldn't really bother me.  It's not costing me anything, but it's a poison in my body that has a lot of potential to be bad for me.  It isn't like the Humira that I was actually seeing improvement with my psoriasis almost immediately.  I'm 3 and a half months into the Simponi project, and nothing.  My skin is worse than before, I've developed pustular psoriasis on my feet, and my joints hurt ALL the time (not better or worse than before).  If I'm told not to continue it's not a loss of a dream or even the shimmer of hope.

OH MY GOSH I LOVE CABLE!

I've been offline a few days because I was in between Internet providers.  I could have blogged from my "smart" phone, but arthritic fingers and touch screen typing on a more than twitter length entry is just NOT going to happen.

I had my appointment to get Internet AND cable with Time Warner Cable.  Let me just say that I remember why I left them.  My appointment was 8-12.  It seems that the cable company can't commit to a tighter time frame than 4 hour chunks of time.  As it turns out they can't even keep that commitment.  A bit after noon I got the call that there had been a vehicle breakdown, and my technician would be by before 1.  Around 1:30 I was getting REALLY irritable.  A storm was coming in so in addition to my generally impatient self I was having steadily building pain and swelling.  I called customer service to find out where exactly was this tech and when exactly would he be arriving at my home for my 8-12 appointment.  I was told he would be there by 2.  The tech pinkie promised it would be so.  At 2:49 the knock FINALLY came.  He didn't have the right modem, and I misunderstood the channels I was getting.  The tech "didn't have time" to upgrade my channels, but he happened to have the right modem in his truck.  Needless to say I was still a very angry, in pain cranky pants.  I did some errands and cooled off a bit.  I decided since I had experienced 2 of Time Warner's forms of service and been astounded at the level of crap it still was I would try the third.  Internet chat customer service.  I'm pretty sure the first person I chatted with was in India.  She wasn't bad, but pretty minimally basic in her responses and the typical typographical errors you see in people who are not native English speakers.  She decided to send me up a level.  The next person I spoke to was AMAZING!  She restored my faith in humanity.  In 20 minutes she had me upgraded to the right stations, threw in a year of Showtime for free and said she would forward my complaints to the local offices responsible for my issues today.  Do I really believe she'll forward my complaints? no.  Am I watching free Showtime right now and never leaving my couch ever again? yes!  I didn't even have to pull out the service connected disabled girl card!

Now on to psoriasis stuff.  I took my last shot of Simponi on Thursday.  I see no improvement anywhere.  My hands itch like crazy and are cracking again.  SO attractive.  My feet have gotten more pustular spots, but luckily the majority aren't rupturing.  They burn and itch, but the danger of infection probably isn't worse than usual with the regular plaque psoriasis I always have on my toes.  I've found if I waddle on the outside edge of my feet it doesn't put as much pressure on the actual pustules   Of course my ankles are not happy with that, but I told them to shut up and suck it up for the team.  The Dr prescribed me Arava, and once I get the results of my Hepatitis screening I'll give that a try.  I'm a bit scared of it so this is why I am using my hep screen as an excuse to wait to try it.  I should be started by midweek and will be sure to give you all the side effect breakdown as it happens.

I think that gets us up to date after my little forced hiatus.  I'm off to go watch some more Showtime and read up on Pintester so as I look for things on Pinterest to entertain me while I'm on medical leave, I don't do the disastrous   The Pintester "fucks up pins so I don't have to" and I will be eternally grateful I didn't try the strawberries & cream mug cake. See her facial expression below.

It's poison time!

It's shot day. Hard to believe it's been a month already since my last one. I still have seen NO improvements. My psoriasis is actually still worse. I've developed pustular psoriasis on the bottoms of my feet. I have had fairly mild pustular psoriasis on my palms before and it was irritating there, but not life stopping. When it would rupture I could clean it, put some antibiotic ointment on it, and slap a band aid on it and it would be fine. On my feet however it's a whole new ball game. It runs up the middle of my feet and on my left foot actually has a few spots at the top of the ball of my foot right where it meets my toes. I've had a few spots rupture including one by my middle toe, and it is painful. Luckily it isn't too painful to walk most the time yet, but if the rest come to roost all at once I will be a very cranky and highly medicated person. Mostly now it just goes through phases of feeling like the spots are burning. Somewhat like walking barefoot on black concrete in the 115 degree AZ summer.


Since I'm having no improvement Dr. Lavery wanted me to try Arava. It is in the DMARD class of meds and should suppress my immune system even more. I waffled on if I was on board with this, but finally gave in yesterday and had him call in the prescription. I will start it on Monday. I don't want to bombard my immune system all at once with the Simponi and a new drug tonight so I'll give my system time to equalize a bit with the Simponi shot and give it the wham bam of Arava on Monday. For anyone wanting information on Arava it is here. It does have a black box warning so be sure to read EVERYTHING if it is something you are interested in talking to your Dr about. Be informed!


I think I am done with smoking Chantix has been working well for me for the most part. I've had some really interesting dreams, but nothing disturbing. What has really been the nail in the coffin so to speak was my huge back slide last night. At vagina night I smoked probably 7 cigarettes. I was physically ill and vomiting when I got home. Not only that I woke up feeling like I'd been licking the cat box and my throat hurt. I am SO done with cigarettes. Today I have had absolutely zero desire for a cigarette. Even sitting on the patio around other people who were smoking didn't make me have the smallest inkling for a drag. Just YUK.


Well I am off of here to go shoot up the Simponi. I'm not the slightest bit tired so I will probably be awake most the night once the dizziness kicks in. Chat me up on FB if you are with me in the land of insomnia!

When you're sliding into first and you're feeling something burst....

I got a TDAP vaccine Monday.  Boy am I regretting it at the moment.  Of the posted potential "minor" side effects I have all but 1 which is the rash.  Not like my skin needs ANY more issues.  Because of this I decided to talk about vaccines tonight.

When on immuno suppressors, such as the Simponi I am on, you have to be VERY careful about vaccines.  Your immune system is compromised so the side effects can be much worse than you would normally experience.  I am going through that at this moment.  NOT fun.  You also should take absolutely no live vaccines.  I don't know the full list of these, but I do know one of the most common being the flu vaccine which is inhaled.  I have always had a bad time with any flu vaccine so it is one I always avoid as a rule.

Another thing with vaccines to consider even if you are healthy, but have a family history of immuno disorders, is that they can actually trigger the immuno reaction.  This is also my situation, or at least it is suspected to be.  I was a healthy, active person before taking the Anthrax vaccine when I was in the army.  I had a very strong reaction almost immediately after taking it, but 2 weeks or so after my 2nd round is when I developed psoriasis.

I do believe personally that vaccines have benefited the human race.  Many diseases that were killers in the not so distant past are no longer the universal threat they were.  I also believe that we have managed to systematically ruin our immune systems by trying to manipulate them.  Not only with vaccines, but with the barrage of anti-germ products we are inundated with.  I don't know what the answer is except to be informed.  Just like any medical decision weigh the goods and bads.  I decided the benefits outweighed the negatives this time and took the TDAP.  Yes I am pretty miserable, but whooping cough would kill me with my compromised immune system.  Hopefully the nausea, vomiting, diarriah, fever and pain will pass soon.  In the meantime I am catching up on all the chic flicks on netflix.

Here come the bipolar symptoms!

I am now 3 days post shot and some things are up, some things are down, and some things are just plain all over the place.  In the pain department I'd say there is improvement.  I am in pain everywhere, BUT it's what I like to call functional pain.  I did need a vicodin this evening.  This being said, we had storms all day today, and a pretty big one this evening.  My pain was nothing compared to what it was when we had similar storms last week.  Before Simponi these storms would have taken me out especially considering we've had them for 2 days now.  Patient reviews I read before starting Simponi said that most people felt results between 2 days and a week post the first shot.  So a positive trend on the pain front.

My skin is a little bit all over the place.  Some of my worst spots for psoriasis are appearing to be improving even if I do itch EVERYWHERE.  Then there are a few places that I have never had psoriasis that have new patches.  My most scaly spots are shedding like a lizard molting and new skin is healthy underneath.  Even my butt which has red blotchy psoriasis has a whole section that is now clear.  I have a rather large butt so that is quite significant.  Then there is my face, outer ears, eyelids, and inside my nose, which have never had psoriasis, have developed small patches of scales.  My scalp which is a long time issue is still bad, and feels like it's getting worse.  I'm not sure whether to call all this improvement, or getting worse.  It's very up and down depending on how you look at it.

As for side effects, the nausea is better, but still lingering.  Dizzy spells come and go, but are getting better and less pronounced.  The arthritic flare is still around, but as I said my pain level is less than I would normally expect when having the level of storms we have had this weekend.  My feet and hands don't seem to be swelling as much as before either, but I am having random seizing of my toes and fingers.

I know this blog is pretty sterile today.  It's really more for my own benefit to track how I am doing symptomatically with this new drug.  Tomorrow I will go back to being my comical self.  Hopefully a comical self in even less pain than today.

Day 2

It's been a little over 48 hours since I took my first shot of Simponi.  I'm still pretty fatigued, but the nausea and dizziness are better.  I'm having a mild flare, but that very well could be from storms in the region yet again.  The big thing I've noticed today is I itch!  This isn't necessarily an unusual thing with as bad as my skin has been in the last few weeks.  The new thing is that it's like I'm sloughing off all the scales and underneath is new pink skin WITHOUT scales.  This is pretty gross, but I'm having large scales of psoriatic skin literally peeling off.  I feel a bit like a lizard that is molting.  I have a few deep cracks on my hands that will take more time to heal, but the areas that were just scales 2 days ago are looking more pink skin and less scales.  It seems ridiculous that my psoriasis could experience such dramatic change in such a short time, but this is what I am seeing.  The spots that were scaly look a bit like I have scarring from a burn.  Hopefully by tomorrow my dizziness will subside enough that I will feel comfortable driving.  I had my daughter drive me to the grocery store today.  I am thankful she was able to do that for me, but I'm pretty sure her playing speed racer around corners cut at least a few hours off my life.

Not much more to report today.  If my side effects remain mild and I continue seeing improvement in my skin (and hopefully my joints soon) I think Simponi may be my miracle drug for now.  There is a possibility that after a few months the nausea and dizziness will lesson quite a bit as my body gets used to the medication and quits fighting it so much.  I think I can see light at the end of the tunnel!!!

On a side note I made Creamy Bacon Carbonara for dinner tonight.  It was OMG good!  If you are looking for a great pasta dish with all natural ingredients this is your dish.  We added some shrimp to it, but otherwise made it exactly as written on the recipe.  I wish I had taken a picture of it before we devoured it.  It will be a make again meal for sure!

And Wheeeeeeeee

I took the first dose of Simponi last night.  So far no severe side effects.  Some nausea, dizziness,fatigue and the expected arthritic flare.  All these are on the box so not shocking.  Also all are what I would consider mild side effects as long as they don't last long.  I'm not sure at what point and time I would say the lingering effects would be considered long standing, but for the moment I'm not concerned or overly uncomfortable.  I did come home from work at lunch because I was mildly worried about the dizziness in that I didn't want to have a strong spell of vertigo and end up on the cement floor or head first into my desk.  I felt sitting or laying solidly on my couch was probably the safest place for me.  If this medication does work I will gladly give up a day or two of feeling generally yucky for 4 weeks of feeling generally better.  This was the case when I took Remicade. 

Me getting remicade.

Remicade is an infusion.  This means it is delivered via IV.  I would go every 4 weeks and spend 3 hours with my favorite infusion nurse.  The doctor's office had fairly comfortable recliners or cushioned rockers to "relax" in while hooked up to the drip.  With me, I usually started feeling my side effects within 20 minutes of the drip starting.  Remicade would literally take me out of commission for at least an evening.  I would be exhausted and almost instantly would have a arthritic flare.  It was worth giving up a day of my life every month to have relief with both my arthritis and psoriasis for about 25 days.  The last few days before my next infusion was due were tolerable, and knowing that relief was coming made them even more so.  Remicade also seemed to slow down the progression of my arthritis.  When I started it I had mild arthritis in my hips, lower back and left shoulder.  Not to say mild in that it didn't affect my quality of life or my functionality, but that it was not debilitating to the point it was keeping me from working or living most the time.  While I was on Remicade I had almost no psoriasis and I didn't develop any new arthritis.  The flares were greatly reduced in my pre existing arthritic joints, and I was able to have a generally active life.  Remicade worked well for me for about 4 years.  The last year I was on it the  results were shorter lived on my arthritis.  It was still working wonders for my psoriasis, but my joints were not so lucky.  The length of time I was having relief seemed to be shorter and shorter till I was getting some relief for about a week and then have aggressive flares through the other 3 weeks.  The arthritis started to find more joints as well.  That was the point that I decided that the risks were out weighing the benefits and stopped taking it.

I hope Simponi will have a similar effect.  I don't mind a little discomfort to receive a lot of relief as long as the relief outweighs the discomfort and the potential long term effects of taking biological treatments. 

I share this for anyone out there considering biologicals.  All of them are impressive medications.  Finding the right one for you can be a bit of a roller coaster ride, but if you find one that works it can be amazing to have more of your life back. 

I also wanted to mention something my mom located and informed me about.  Chronic Disease Fund offers assistance with medications, patient care, and transportation and lodging assistance in connection with disease care.  It is worth a look see for anyone having trouble financing their medications and care.  They have a list of conditions and medications they assist with and show which of those they have openings for at this time for new patients.  

Finally I leave you with some classic Gonads and Strife.  And WHEEEEEEEEEEEE......

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.