Yeah, I'm plagiarizing myself!

On Inspire today someone asked for people to post their journeys into P and PsA.  I did it and realized that I had never actually written it all out.  SO you all get to benefit from my novel warm up posting.  Here ya go, the journey into Hell...

I was diagnosed with Psoriasis in 1998 after having a bad reaction to a Anthrax Vaccine. Soon after I started experiencing severe bursitis in both my hips. In hindsight this was probably the beginning of PsA. Swelling of the bursa in your large joints is a common start to the damage of the actual joints that happens in PsA. I was discharged from the Army because the swelling and pain in my hips from the bursitis had gotten to the point I couldn't do "soldiering" such as qualifying with my weapon in the prone position, run the 2 miles for my PT test, pass the sit up portion of my PT test because my hip flexors were already starting to be compromised, among others. When I had my VA appointment the Army decided that my P was service connected. I moved forward with life, found a job in my military trained career field, and got the typical creams, steroids and muck that was available for p at the time. Around 2000 I started having many more symptoms that again in hindsight were probably PsA. Pain deep in my hip joints, stiffness of my hands, lower back pain for no apparent reason, fatigue. I went to several Drs and was generally referred to a Orthopedic Surgeon. Of course there was no sign of actual arthritis and was again denoted as Bursitis and given a steroid shot to my hip since it was the most usual place for regular pain and sent on my way. In 2004 I was having a particularly bad P flare and was sent to see a dermatologist. He said it was time to discuss DMARDS and Biologicals, and suspected because of my other symptoms I was very likely actively into PsA as well. He prescribed me Methotrexate and it was like magic! My skin cleared up alot, my joint pain was SO much better, but with that magic came some side effects which were not so pleasant. I was taking the pill form and would be so nauseated for 24 hours after taking my MTX that I would actually have a migraine induced from it. I was also very fatigued, more so than usual. The Dermatologist switched me over to the shot form of MTX and suggested I take it at night before going to bed and have some toast and milk before going to bed as well on MTX nights. This seemed to take care of the nausea. The fatigue was something I decided was a necessary evil to have my beautiful skin back and finally have some joint relief. The magic of course was short lived. About 6 months before the joints started really screaming again. The Dermatologist suggested I go to see a Rheumatologist. The Dermatologist had noted in my records that he suspected that I had PsA already, but I needed a Rheumatologist to make it official. Of course I got one of those Doctors who won't make a call officially until they have hard proof of it. She agreed I did have an immuno based arthritis, and I did have psoriasis, but she wouldn't designate it as Psoriatic Arthritis in my records. Just Psoriasis with presentation of multiple joint Arthritis. This was all fine for me at the moment as long as I was getting the treatment I needed which was biologicals and at this point pain meds. She put me on Enbrel and gave me a script for Vicodin and sent me on my way with check ins every quarter to check blood work and see how Enbrel was helping. Again it was MAGIC! My skin was totally clear in a matter of weeks. I was back to working 60+ hours a week, traveling for work, going out with friends. I was in heaven. Then slam on the breaks! I returned from a few days in Houston and had a fever of 104. I went from fine to pneumonia in less than 24 hours. I have been fortunate with my medical professionals that they are pretty open to inter discussion about my issues so when I went to my PCP for the pneumonia she immediately called my Rheumatologist. The decision was made to stop Enbrel and once I was recovered from the pneumonia to come in to see what to do next. It took me over 2 weeks to actually be functional again. Not only do biologicals make you more susceptible to infection and illness,but it also makes recovery a longer process. I was then started on Remicade with a low dose of MTX. My body has a long history of becoming immune to meds quickly and the Rheumatologist decided we'd use MTX to slow down my bodies natural defense of becoming immune to everything. Remicade wasn't the magic that MTX and Enbrel were in the beginning. I did feel less flared most of the time, but it took about 2 months to really kick in. Slowly but surely my skin cleared, and my joint swelling lessened. I was back to wearing shorts and tank tops. I even wore a swimsuit again! I was dancing, traveling to India for work. Life was looking pretty good. I did eventually get to the point I couldn't tolerate MTX so about year 2 of Remicade I stopped MTX. My body started doing its thing pretty quickly and my Remicade infusions were becoming less and less effective. My Rheumatologist started upping my dosage and frequency, and went back to vicodin for pain as needed. By year 3 I was at max frequency and max dosage of Remicade. I was also needing vicodin at night to be able to sleep because I was in enough pain that I couldn't find a comfortable position to sleep in. Many nights I found the only position that was comfortable even with vicodin was in my recliner. I had my friend move my recliner into my bedroom so at least I could sleep in my room and not be taking over the common living areas of my home with my disease. I also started noticing that my minimal dosage of vicodin wasn't working and approached my dr about changing medicines. I have been using pain meds for bursitis for years and have always stayed on the lowest dose by changing chemicals every few years. The Rheumatologist had a strict policy of no triple script meds. Meaning no narcotics that required hand written scripts in triplicate. I understood her issues with triple script narcotics, but I didn't agree with it so I decided to look for a new Rheumatologist. In the midst of this I had had filed a VA claim for my PsA. Since I was already rated as service connected for P it would be common sense that my PsA was a continuation of that. Right? Uh no, since my Rheumatologist had not put my condition as PsA, but Psoriasis with immuno related arthritis the VA decided that I had Osteoarthritis in my shoulder since that was the only place I had listed on my list of most affected joints that had actual arthritic damage at that point. This is the journey that has lead me to my current Rheum. He is awesome. He kept me on Remicade for about another year, tried several other DMARDS which had never even been discussed with me before, switched up my pain meds for 6 months and then switched me back to vicodin once my body had forgotten about it just as I predicted it would, explored naturistic and homeopathic options with me, suggested dietary supplements for me to try, and has been the best dr I have ever been to. It was finally decided that Remicade wasn't helping my joints and it was time to consider other options. My skin was still pretty clear but my joints were not doing well. He supported my decision to try a natural route for a while as I considered my options and hoped for some other meds to come on the market. I was biological and DMARD free for a little over a year. Again hindsight is a bitch and it was probably a mistake. In that year my P and PsA became very aggressive. The decision eventually made to try Humira. I had a glimmer of hope because my big toe, which was covered with P and cracking, was almost completely clear at the end of week 1. Then came the bad. Right before I was to take my 2nd shot I started losing my hair, I developed sores in my mouth so it felt like I was gargling glass, and I started getting hives. Yep you guessed it, stop the Humira. Now we are up to date. I am currently on Simponi. I have been taking it for about 3 months and it is doing zero, zip, nada. Since starting it I have developed Pustular Psoriasis on my feet, my P has been in constant flare, and my joints are no worse or no better. I have a bottle full of Arava I can start taking, and when I spoke to the Dr's office this morning they said my Hepatitis screening was clear so I could start taking it, BUT it was pointed out that I have been gasping. Apparently I have been doing it for a few months. The boyfriend noticed it was pretty bad this weekend and asked how long I had been having "shortness of breath". He said he had noticed it occasionally for a few months, but Friday it had started to get very noticeable and worrying. He wanted to take me to the ER. I of course said "I just need a deep breath every once in awhile! I'm fine! I used to be an athlete, I know what shortness of breath is! This isn't shortness of breath! You're stressing me out (deep gasping breath)" Ok called the Dr this morning and have an appointment on Thursday to see him and get poked prodded x rayed and scanned. 

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!

Back to life.. back to reality..

Today is the first Monday of many that I am on medical leave.  It started last week, and I took some time to be lazy, have a pity party, feel aimless and useless.  Now it's time to suck it up and make the best of it.  I know I was realistic that the time of no working was coming, but knowing it's coming and landing in it are very different things.  This morning I actually feel pretty good for me.  My skin is screaming, especially the bottoms of my feet which are trying to erupt but haven't yet.  This is my first experience with pustular psoriasis on the soles of my feet so I'm not sure what to expect.  When I've had it on my hands it's been mild and never really erupted.  I was able to cover the pustular spots as they came up with bandages and they would just do their thing.  It was uncomfortable, and occasionally painful if I hit a spot directly, but I was able to avoid direct contact most the time.  With it on my soles I can't avoid it unless I stop walking.  The irony is that for the first time in months I don't feel like I was hit by a truck this morning.  I ache, my feet are swollen, and my hips and back hurt, but I feel functional for me.  I realize this is most likely a side effect of the steroid shot I got last week.  I usually feel better for about 10 days after getting them.  It took longer than usual for it to kick in this time,but I was worse than I've ever been as well.  Of course it's par for the course that a day that I actually feel pretty OK arthritis wise my psoriasis is being difficult. HA such is my life.

I have a new whiteboard on my fridge.  I spent the weekend thinking about what I was able to do and writing things in to fill my days.  The rest of this month is all about organization.  Come the end of June I'll be moving whether it's to a smaller place locally or to Phoenix to be near my family so it's time to sort, toss, and realign all my stuff.  Normally I would do this in the matter of a few days.  Being ex military and a ex military spouse I have done the moving thing many many times.  I have it down to a science, but I realize that this time is different. I can't lift heavy boxes, I can't spend hours sorting, I can't lug heavy bags to the garbage, and I can't move furniture around anymore.  I need to give myself time to do this, and I need to be OK with it.  So what normally takes me a few days I have on the calendar for the whole week.  I'm OK with it if I don't get it done this week because you know what? I have 12 weeks to fill.

I also considered a daily schedule.  I was hoping to be up at 8ish and in bed by midnight.  Taking naps as I needed, but making sure I got those good 8 hours of sleep EVERY night.  Last night was the first night of my plan and insomnia hit hard.  I'm only an hour behind my plan right now, and it's not really etched in stone, but I'm a bit OCD.  It bothers me some that my first day of trying to have structure in my disability is already behind schedule.  I'm sure I'll get over it by lunchtime when I'm eyebrow deep in 20 years of pictures I'm sorting through with the cat helping me.  Maybe daily schedule will start next week.  Maybe I will just need to have a daily process (breakfast, shower/bath, email/blog, morning chore/task, lunch, shopping/afternoon task, dinner/evening plans, bed) rather than picking hours to live by.  I guess part of being on medical leave is you don't have to live by a clock schedule, but it's hard to get used to after years of counting minutes and hours.  Next month I'll be doing National novel writing month so I'll have 30 days to write a 50,000 word novel.  That should keep my mind active to be sure.

I'm off to finish my tea, take my vitamins, have an egg white omelet, and get to mission organization.  Wish me luck!