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

Ch Ch Ch Changes....

Here we are at Sunday.  Another weekend gone by in the blink of an eye.  I've spent a lot of time thinking this weekend though of the fact that going on disability is likely to becoming a reality soon rather than a someday eventuality.  For 2 weeks now my arthritis has been out of control, my psoriasis is worse than ever (including a really bad flare on the bottoms of my feet which I've NEVER had before), and besides being sick for a week from TDAP my energy level is in the pits.  I only worked about half time last week, and I feel SO guilty on those days even though I am not getting paid for the time I'm not there with FMLA.  Until my arthritis really started effecting my energy level and my pain was becoming limiting about 5 years ago I was working 60+ hours a week.  Previous to that job I was working multiple jobs both paying and volunteer so the idea of working 20 hours a week and being exhausted is just down right embarrassing.

So I am working on coming to terms with that.  I spent a lot of time talking with my oldest daughter about it. She is the muse I used to be when I was younger.  Full of realistic ideas and optimism.  She helped me see that this will be a better life for me.  I am really cheap so the monetary change will take some adjustment, but won't be devastating.  If anything it will be that challenge that may keep me sane.  I quit smoking mostly because it is my largest discretionary spending I have.  I really don't drink, I don't do illegal drugs, I don't shop much without a lot of lists, planning, and thinking.  I smoke my cigarettes.  I like my cigarettes.  Cigarettes are $200+ of my budget that I can get rid of.  Today is my first day cigarette free.  With the help of Chantix I am doing pretty good.  Yes, I am thinking about them occasionally, but I haven't gone searching for butts or done an emergency run to the smoke shop for a cigar to get me through without buying a full pack.  I have quit using Chantix before and it worked awesome.  After a week of not smoking, even being around people that smoke didn't bother me.  I didn't miss them.  I just have to accept that I am always going to be a smoker, and in order to be smoke free I can not touch cigarettes EVER.

So hopefully this week will be OK.  I see Dr Lavery on Wednesday, and we'll have the disability talk.  Maybe I can just limit it till the end of the year for at first and hope that the Simponi will kick in at some point between now and then.

Wish me luck on the quitting smoking!

I got a new drug.

So in the last 24 hours I have gotten the Simponi approved and received my first dose from the UPS guy.  I will be taking it tomorrow so fingers crossed!  I also got my FMLA approved.  Now I will probably lose about 20% of my income because I don't get paid for FMLA days, but I also won't get fired for my absences.  80% of something will always be better than 0% of nothing, right?  Also if I'm making 20% less  my kids might actually qualify for some federal student aid.  LET'S GO PELL GRANT! 

This week has been a pretty moderate pain week thankfully.  I haven't needed a vicodin since Monday.  Now this isn't to say that I'm not in pain.  It just means my pain levels are manageable without narcotics for now.  Something I have found people who don't have chronic pain can't wrap their minds around is how people with chronic pain perceive pain.  I personally haven't had a day without pain in so long that I can't remember what it was like to be pain free.  People in my life will frequently ask me if I'm in pain.  If I answer honestly my answer would always be yes.  What doesn't factor into the black and white answer is the fact that when you have chronic pain you learn to have a level of "acceptable" pain.  It's still pain, but you don't really register it anymore unless you focus on it.  It's like if you work in a building that has a piece of machinery with a constant hum.  Do you hear it?  Yes, if you think about it and acknowledge it you hear it, but on a day to day basis you learn to kind of ignore it and it just becomes that white noise you don't really hear anymore.  This is part of the reason that having mental coping mechanisms can be so important.  It can be a quick flush down the toilet of life if you let the pain be a focus for too much of the time.  It can become all consuming.  It can drive you to being mentally ill on top of physically ill.  It's a delicate dance to manage your pain, your mental health, be mindful of your medications and their side effects and living a somewhat normal, all be it adjusted, life.

As I've said  before reading is one of my coping activities.  I also practice that deep breathing "in through the nose, out through the mouth" used in both Lamaze and yoga.  Funny both those things use that breathing practice as my experiences with both have had extreme and painful results afterward.  Anyway,  know your comfort positions.  Mine change over time and depend on the particular joints having a bad day.  When it was just my hips I would sit kind of Indian style and then lay back.  This stretched out my hip flexors and forced my back into a more comfortable arch.  I could sit like that and day dream for a good hour at a time.  Yes I looked a bit crazy dropping down on my coat on the floor of the airport, but it sure felt a lot better, and those long boring layovers were much more tolerable.  Laugh.  This one is a universal mood enhancer.  I'm blessed with the ability to find humor in the not humorous.  Much to the dismay of many people around me who find it impolite, but none the less there has to be a reason for inappropriate humor.  Maybe my arthritis is the reason.  No matter what's going on I can usually find something humorous and inappropriate to say or think.

So to end today's blog I'm asking everyone to keep their fingers crossed that not only does Simponi help my arthritis and my psoriasis, but that it doesn't bring on the side effects from the depths of hell.  I'll take a few minor ones, but I'd rather not gargle glass, be bald or get pneumonia.

Mary Jane

Tonight I went to play poker with my honey for his birthday.   The usual suspects were all in attendance.  I ran into my RA friend, and we had a brief discussion about medical marijuana.  It was not a detailed talk or debate, but really just about whether it was available in Arizona where we both plan on residing in the not to distant future because the climate is favorable for our arthritic conditions.

This got me to thinking about the benefits/side effects of marijuana on PA specifically.  I fired up the computer as soon as I got home and got to reading.  I won't say I have never smoked marijuana, but it has been some time since I have.  I am not against it.  In fact I feel that it's probably less damaging than alcohol and cigarettes which are legal.  I haven't experimented with it's effects on my PA because it is not legally available in Texas and I can't afford to lose my job due to the legal issues of using it for pain relief.

So here is  what I found in a brief search.  MJ is believed to have  immune-modulation and anti-inflammatory properties.  So not only assisting in pain relief, but may actually act as a immuno inhibitor and reduce painful inflammation.  Studies are limited, but Chinese medicine has used MJ as a rheumatism cure for centuries.  Studies done in states where medical MJ has been legalized it has been proven to improve mobility and reduce morning stiffness.  Some info on these facts is available at Americans for safe access.  A study done in 2005 states that a medication formulated with plant extracts of MJ taken in the form of  a mouth spray actually blocked progression of RA and increased quality of life in study participants.  More info on this study can be found here.

I realize that studies are limited at this point due to the legality of MJ in most places.  This is the info I was able to find in a brief google search over the last couple hours.  I'll probably do a follow up blog at a later date when I've had time to delve a little deeper into the big bad world of weed.  In the meantime it's something to think about and research on your own if it's an option for you. A list of current states with medical MJ can be found at ProCon.org .  This link has a chart of states, when it was legalized, and some of the stipulations involved in the laws for that state.

Let me introduce you to......

THE CLAW!!!!

Today's winners in the arthritis fun lottery was hands, feet and a new entry the left elbow.  My hands and feet both swell regularly.  In fact you can almost set the clock to my feet.  About 6pm every night they start their sausagey existence.  Some days however the swelling just comes up spontaneously like a jack in the box.  SURPRISE I'M HERE!  Today was one of those cases and my old arch nemesis the claw appeared.  This little joy is when the swelling causes my hand to actually seize.  That kinked up middle finger is especially attractive.   Thankfully both hands and both feet don't do this seizing all together usually, but on days that I do get it in pairs or quads is REALLY fun.  At least my nails are pretty. 



This will not be my Kryptonite!

Since today was a rather busy day for me at work I am pretty pooped, and don't really have anything amusing or personally PA related to share.  I thought for today I would share some of my own tips, tricks, motivators, and crutches that get me through the days, weeks, month, years.  Because this disease is so individualized I realize that there are no universally applicable tricks, but maybe something will give you a new method to try.

One place on the net that I have found inspirational and informative is the "But You Don't Look Sick" web site and the Spoon Theory.  This place is a gold mine of greatness not specifically for PA sufferers, but anyone who has an illness that is "invisible" from the physical and mental plethora of diagnosis.  The message boards are a great place to find support and information or just to vent on a bad day.  Even if that bad day has nothing to do with your illness.

Find a brain activity that you love.  Mine is reading.  I can read for days.  In fact I can forget to shower and eat because I have gotten so engrossed in a book.  One of the problems I have found with chronic pain is the sensory overload that is caused from constant activity of my nerves responding to pain.  Reading doesn't stop pain, but it does distract me from it to some degree.  I sympathize with the problem of pain being so distracting that you can't focus, but I started small.  I committed to reading an hour a day.  No matter how much pain I was in or how distracted I was because of it I would get through that hour.  Now once I get started I can usually zone out some of the pain because I am focused on the book. This works for me versus say watching TV because I have to be actively mentally involved.  It doesn't end up being white noise (like TV) that I space out through or pretty much ignore because I am focused on my pain.

Find a "beauty routine" that makes you feel pretty/handsome.  For me it's giving myself a manicure/pedicure.  I might feel like my skin is gross on any given day, but my nails are fantastic!  Before my skin got really bad I went to the salon for a manicure and they said my nails looked like acrylics.  I spend a lot of time on my nails in the scope of all my other beauty "routines".  I am one of those girls that can be up, showered, dressed and out the door in less than 20 minutes.  I do look forward to my me time with my nail polish.  Sometimes I really splurge and have a good long soak in the tub before my mani/ pedi.  At any rate, I get a lot of compliments on my finger and toe nails despite the scales.  The added bonus is that it covers up the ridges and psoriasis I have under my nails as well.

Comfort foods!  Many people have food triggers for their psoriasis.  I am fortunate that I don't seem to have any.  It is just bad all the time.  Sometimes the most basic comforts are the greatest thing ever.  Whether it's mashed taters or ice cream if it gives you comfort it can't be a bad thing in moderation. 

Be your own health advocate.  This is one thing it took me a while to figure out.  So many Dr's have told me how my body is supposed to be behaving or reacting.  I've been in this body for 40 years and I know what is not "normal".  Be aware of what therapies are out there.  If your Dr isn't interested in allowing you to try new, holistic, or different treatments, or stop, start or change medications because they know what's best for you and your body, it may be time to find a new Dr.  I'm not discounting any Dr's expertise.  We pay them the big bucks because they are the experts, but YOU are the expert on your body.

Allow yourself to have a bad day.  I hate to fixate on how PA affects my life, but some days it's good to just let it all out.  When I had cable I'd spend a day watching Lifetime movies and Reality TV shows.  The lifetime movies allowed me to cry.  I am not a cryer, but put on one of those movies and the flood gates open.  The reality TV lets me see that my life isn't the worst train wreck going.  I might be scaly, sore and irritable, but I'm not on Jersey shore.  I also have a venting friend.  She has pain issues as well so we let each other complain with no holds barred.

Finally find your joy.  We all have something that no matter what happens in life there is something that universally brings us a level of happiness.  Whether it's your family, your pet, the color purple, or a special place in your youth, find something that you can think about that brings you peace and happiness.  Multiple things are even better!  When your having a bad day have that picture of your favorite beach you found shells on as a child and remember how much you loved that.  Don't think about the future, your pain, your frustration or anything else.  Think about joy.

I am sure there are many others, but these are a few things that work for me.  What are yours?

Just left of "normal".

I received a call from the specialty pharmacy that sends Humira to me.  They were checking in to see how I was progressing since I started taking Humira.  This was before the miracle big toe discovery, and at that point I really had nothing to report so they went through a series of questions.  How does my arthritis effect my daily schedule?  Does it limit dressing such as tying shoes, buttoning buttons?   This series of questions made me realize that even though I have made alterations to my life to accommodate my condition, I sometimes don't realize how much.  Some things are small changes.  They become ingrained into your daily life so much that they don't seem like accommodations as much as just the way it is.  Until someone actually points it out to you, you forget that anything was ever different.

One example is buttons.  Does my arthritis affect my ability to put clothing on because I can't button buttons?  Well actually no.  Not because I can always button buttons, because I can't.  It doesn't affect my life because I just don't do buttons anymore.  I have maybe 2 shirts in my closet that have buttons and they've been hanging untouched for about 2 years.  I buy my jeans a size too big so I don't have to deal with the button, I can just pull them up already buttoned and zipped.

This got me to thinking about how many things I've adapted in my life to accommodate my growing limitations.  I still cook and I love to cook, but I don't do any fine chopping or cutting anymore.  I don't hand whip and mix anything anymore.  I have bought a stand mixer and 2 sizes of food processors to do these things now.  Yes I realize these are appliances that many people without limitations own, but my whole purpose in purchasing them was because I needed them to continue doing something I love.  I almost always wear flip flops, sandals, or slip on shoes.  Not because I live in Texas and it's required shoe attire, but because tying shoes is nearly impossible on days my hands are swollen and stiff.    There are a lot of days when I just can't get my feet into shoes, but shoes I can slide on and off are doable for times I have to go somewhere.  Every purchase that has to do with daily living has some adjustment for my condition.  I switched from a manual transmission car I loved to an automatic. I bought a bed that is high enough that I can ease down onto my feet in the morning and isn't too high so I can sit on it without effort.  I also have learned not to be quite so OCD.  If don't have to vacuum and dust every Tuesday,  I don't need to scrub the grout on the shower every third Saturday.  I do these things when my body feels up to it, and that is OK. 

All these things are just part of my life.  I don't think about them anymore.  It's usually unconscious decisions because this is how my life is.  I once had someone ask me how I could be OK with how much my life has changed especially over the last few years.  My answer after some thinking on it was that we all have something a little left of normal.  We all make adaptions in our life for that.  We don't stop living. We adjust, adapt and overcome.  We celebrate life for it's blessings and joys, and try to not let the bad moments be the only thing we dwell on.  Life goes on and so do we.

What happened to your skin?!

I guess I should start this with the standard introduction.  Blogging being a narcissistic format it would be expected I'd want the world to know all about the who, what, where and when of my life.  Truth be told I got to looking for other blogs about Psoriatic Arthritis and found not many people sharing about it.  A few were found thanks to our good friend Google, but most are short lived.  I felt a bit cheated by Google because I was having a misery loves company moment and damn it there just wasn't much misery being shared on the world wide web.

SO, I'll share a bit about Psoriatic Arthritis(PA).  It is an auto-immuno disorder.  It's cousin Rheumatoid Arthritis seems to get quite a bit of press, but PA seems to be a bit of a red headed step child in comparison.  Thanks to Kim Kardashian Psoriasis has been enjoying a bit of celebrity, but the progression into PA has stayed a deep dark secret comparatively.  Like most auto immuno disorders doctors can't seem to agree on a specific or common reason for them to attack. The theories range from a genetic connection, to a traumatic trigger, to some mysterious cosmic plot to complicate an otherwise good life.  Basically with PA the immune system decides to attack your body.  Usually it starts with the skin.  Somewhere I read that a "normal" person creates a full new skin in about 21 days and a psoriatic person in around 6.  My numbers could be off, but the reality is that there's just a lot more skin than you can sloff off so scales and raised red areas form.  The progression from your garden grade Psoriasis to PA happens when that same immuno overdrive starts attacking your joints.  This can happen gradually or aggressively, and it could be at different rates at different times, but when it's all said and done every day is a surprise (YEAH!).

Treatments for PA range the gammit.  I've tried the creams, steroids, narcotics, diet, soaking in baths of various concoctions, TNF blockers (also known as biologicals).  The list could go on for days.  Some work, all be it usually temporarily, some are complete losses, and some I think are just made up so someone can have a good laugh at the desperate levels people will go to for a moment of relief.

As I said before my search for company in my misery came up limited.  I guess my goal is to succeed where others were probably just to tired, sore, and frustrated to continue.  So here it goes, we'll start with a year in the life.  The good, bad and ugly of kankles, scales and general feeling like crap a lot of the time.  Don't get me wrong, I live a pretty good life.  I just think maybe if the disease was understood in a more realistic and unscientific format maybe others afflicted will feel like there's someone out there who gets it.  Maybe just one person won't feel quite so frustrated and alone living with a disease that can be frustrating, painful and defeating.

Come on in and enjoy the ride... Here we go!