Thursday, August 30, 2012

Let's talk about sex baby....

Good ole Salt and Pepa.  I heard them on my radio this afternoon on the way home from work, and decided maybe it was time to approach the unspeakable subject.  I know my mom and sister read this, and my dad probably lurks occasionally.  I have been hesitant to discuss this for that reason, but it's a part of life for most of us so I think I'll go ahead and discuss it with the warning to them and anyone who is sensitive to the topic of this conversation that it will be about sexuality.  I won't be going into the intimate details of my sex life so much as to how chronic illness can impact a person's intimate life and their psyche in relation to that part of their life.  You have been warned this blog will be about SEX.

To start with I will admit I like, no, love sex.  Both the physical and emotional intimacies are something I have always enjoyed.  I wanted to make that clear because this is not going to be someone talking about the challenges of sex with a chronic illness that doesn't even like it much to begin with.  The downhill slope is something that you can see coming, and regrettably wish you could do something to change, but can't.  Just like anything in life that you love to do, the anger, sadness, self loathing and pity party comes when that thing becomes more and more difficult to do.  Unlike dancing or walking this is something that generally affects your partner(s) and their intimate connection to you as well. 

I guess I'll start with the challenges.  There is of course the obvious, pain.  When you are in pain it can be very hard to get in the mood.  Many times once you get the ball rolling you can get past most of the pain, but getting that ball even picked up can be a daunting task.  Not only are you in pain, but your partner is often worried about your level of pain and making it worse.  It often leads to a stalling out of those activities because you can't get past the pain to start and your partner is terrified of doing anything that will make you worse. 

Then of course there is energy.  I know in today's world of work, kids, family schedules, and just living in general that is an issue for everyone.  When you have a chronic illness that is even more compounded.  Not only that, but on days when you do have energy you want to cram everything you can into the day and often wear yourself out to the point that what you sacrifice is the intimate time with your partner.  Many people with busy schedules have resorted to scheduling sex times, but since you never know when your body will decide to suddenly turn into cankles and the claw it's almost impossible to schedule it.  In fact when you are stressed out about making that schedule and pleasing your partner it can actually induce the arthritic flare.  It feels like an endless losing cycle sometimes.

Next on the list of challenges is self esteem.  Another one that many people without chronic illness struggle with I know.  I can speak for myself here though.  It's really hard to feel sexy when I look in the mirror and see the 30 pounds I've held onto the last 4 years and can't diet away because my exercise options are so limited.  To see all the scales, that my butt, legs, trunk, under my breasts, around my groin all have psoriasis spots.  Even my feet are unsexy with the swelling and scales.  Getting in the mode when you feel ugly in comparison to your old unsick self, and knowing that hope for something better is not likely is hard to overcome a lot of the time.

The last challenge I'll address tonight is the fear of letting your partner down ALL the time, and of losing your partner because of it.  My boyfriend tells me all the time that I am beautiful and sexy.  He tells me he desires me.  He also tells me he is patient and will be there when those days come when I am able to have intimate time with him.  I still feel like I am cheating him because I can't give him the frequency or level of intimacy we once shared.  I am lucky that to he is the most understanding and kind man I have ever met, but that doesn't stop the fear of losing him because he will eventually want something more than I can give.

I don't know that this blog will help many people except for them to understand they are not alone.  I don't know the answers to how to build your self image when you know there isn't much you can do to actually improve your appearance or stamina.  I don't know how to quell the fears of losing someone you love because they aren't getting what they need from you.  All I do know is that these things are things I deal with every day, and I know others are going through it too. 

As always all we can do is take things one moment at a time.  Do what we can when we can and hope for the best.

Hello Isaac...

Yep he's coming on over to touch us a little too. We need the rain, but I could live without the added rain pain. 
At least he brought a rainbow with him. If I could get off the couch I'd go steal his pot of gold.


Tuesday, August 28, 2012

Here comes the rain again...

Not here, yet, but in Baton Rouge.  I have a feeling that this song will be going through my daughter's mind for days as all the bands of Isaac swirl around her. 

I am pretty sure if I was there I'd be curled up in the fetal position wishing for death.  The pressure changes that happen in a hurricane are felt by people with out crappy joint issues.  You can literally feel them in the air.  I am SO glad I am not there!  That being said my first born is there, and since I already sold her to gypsies Isaac is not allowed to claim her.  Stay safe Schatze!!!

Monday, August 27, 2012

wobble with it.. or maybe just waddle

Once upon a time I loved to dance.  In fact I still like to, but it's generally while seated in my car.  This little wiggle is nearly as embarrassing for my passengers as my impromptu karaoke, but maybe not quite as much.  At one time I was actually pretty good at boogieing down, or at least in my own mind which is the only reality that is important.  I bring this up because it's something I really miss.  Now I don't wobble as much as I waddle, and not because I'm dub steppin in da club.  I have developed that kind of 8 month pregnant waddle.  The worse the waddle the bigger indication of how bad my pain is in my lower extremities.  I used to get concerned looks, and questions from people at work when the waddle would come out, but now it's so common people just know I'm having a bad day.  Either that or they are thinking my 20 yr old baby fat is the longest pregnancy in the history of man. 

Some days it's hard not to reminisce about all the things I used to be able to do.  I played soccer, I was a gymnast, I was a runner.  All those things fade with age usually anyway, but I don't miss them any less.  It's the things that are daily challenges that get aggravating.  Fastening my bra is one that I never thought I'd wish I could do easily again.  I got a breast reduction to reduce the strain on my back and shoulders, but the ever constant battle of the bra is still a daily challenge.  Of course there's always getting out of bed.  Now that's something that can be a challenge for everyone who holds a job, but for me it's not just a motivational  speech.  It's a concerted effort to actually put weight on my feet in the morning.  Some mornings, more and more frequently, it's just not going to happen.  I can honestly say I wish it was just about motivation to start my day.  Some days it just feels like everything is slipping away.  Then I get in my car and a great song comes on and I wobble right on down the road.

Sunday, August 26, 2012

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.

Saturday, August 25, 2012

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!

Friday, August 24, 2012

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......

Thursday, August 23, 2012

That's what friends are for.

Last night was Vagina night.  The girls gathered as we usually do on the usual patio and enjoyed our weekly visit.  I asked about my blog.  I knew at least one of the ladies has been reading it, but I was curious how I was doing, and getting perspective from people who know me well enough to know I don't want smoke blown up my ass.  I wanted an honest opinion.  They gave me some good input and I was pleased to hear that the overall impression was good.  During this conversation things turned a bit with one friend.  She said that she felt that I wasn't a good friend because I didn't share my feelings about my pain and the struggles I go through every day with them every week when I go to Vagina night.  She felt that I was holding out and therefore didn't value the friendships we all had enough to share these things.  Now I am saying how I interpreted what she said, but that is the condensed version of what was said.

We all have at least one friend that only calls on us when they need something, or is always negative.  That friend that we wonder why we are friends with them at times.  Who wants to be the sounding board for constant negativity or the constant support system?  Yes friends are there to help us, to listen to us, to support us, to be there in the good and bad times, but when there isn't a balance it devalues the friendship (in my opinion).  I do not want to be that friend.  Yes I have issues. Who doesn't?  I do share things when I'm having a particularly rough time with my children, work, boyfriend, or something unusual in my life.  Generally, however, I am a pretty private person.  I have maybe 3 people in my life that I share almost everything with.  1 is my sister and 1 is my boyfriend, otherwise I'm not a open person about things I feel are close to my heart.  That being said I don't even talk about my pain issues all that much with my sister or boyfriend. 

I guess this comment really got under my skin.  I don't think it was said in a cruel or attacking way, but it was said in a way that my friend was hurt that I didn't "trust" her enough to share constant pain with the group and her during our weekly venting sessions.  I guess the reason I decided to actually bring this up was to try to explain what I choose to keep to myself and why.  I have thought about it almost constantly since last night.  It literally kept me awake thinking about it.  I value my friends more than they will probably ever realize, and that my lack of sharing is taken personally in a hurtful way disturbs me.  Probably mostly because my introverted private ways aren't going to change.

I have other friends with chronic illnesses and yes we occasionally have a sharing session about these illnesses, but I think most of them would agree that having that illness be a regular topic of discussion is just not desirable.  We deal with these issues 24/7/365.  When we venture out on a good day we want to escape that. We don't want to whine about it (usually), we don't want to dwell on it, we don't want to give educational seminars on it.  We want to enjoy a night away from it. 

I think part of the reason I decided to do this blog, beyond camaraderie with other PA patients, was to let people have a glimpse in terms they can understand into what someone lives with when they have a chronic illness.  It is hard to empathize when you have no point of reference or personal similarity.  So yes when I am out or with my closest friends I am not sharing my day to day challenges, but I hope that you will read this and be able to understand why I don't want to talk about it all the time.

To my friend, I'm sorry that you have been hurt by my lack of openness over the years.  It is not a reflection on how I feel about you, our friendship, or my level of trust in you.  You have been a great friend to me, and I enjoy our friendship.  I promise that if a day comes that I truly need your help I will call you.  I promise if there is something in my life that I need to talk about I will share it with you.  I will however continue to be a private person.  I will continue to be as positive as I can be.  I will continue to not dwell on the negatives of psoriasis, psoriatic arthritis, and pain the majority of the time.  This is how I am able to function and live the best life I can.  This is how I keep my sanity.

Thank you for being my friend.  You and all the other Vagina ladies are my rocks even if you don't realize it.  I love you guys!

Wednesday, August 22, 2012

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.

Monday, August 20, 2012

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 .  This link has a chart of states, when it was legalized, and some of the stipulations involved in the laws for that state.

Sunday, August 19, 2012

Return of the elephant elbows.

Yes the scales are coming back with a vengeance.  From the one shot of Humira my psoriasis had improved quite a bit.  It was still visible in all the normal places, but it wasn't cracking, itchy, and flaking.  My elbows, knees, hands and feet have started cracking and everything itches like crazy!

I've tried just about every lotion, cream, voodoo magic, holistic cure, and quackabarrel concoction out there to get relief from the constant yuk.  One of the most frustrating things about psoriasis is above and beyond the actual discomfort is the lack of a cure all.  It seems that no one thing is universally applicable for everyone.

That being said, here are some things that have worked for me and a few people who I know who also have psoriasis.

Occlusion:  This is the process of moisturizing or medicating the affected area and covering it.  I have used this method on my hands and feet, and have found it to provide some comfort.  A friend of mine can't say enough great things about this method.  Basically you apply the lotion/medication, cover the area with a warm cloth, and then wrap in saran wrap.  One note on this method especially relating to topical medications, you should discuss this with your Dr.  Some steroids are not safe to apply with this method and can actually cause severe rashes.  I have done this with nut butter when my skin gets especially raw and it does provide comfort for a day or two.

Soaking in oil:  I use a combo of olive or coconut oil, sea salt, and honey in a hot bath.  I generally soak for about 20 minutes in this combo, and then use a loofah mitt to exfoliate.  Remember that exfoliating can actually increase the production of psoriasis, but an occasional scrub can give you immediate relief.

Dry brushing:  Basically this is using a brush (natural fiber brush is recommended) to slough off the skin.  You do this when your skin is dry (hence dry brushing).  There is a lot of information on this technique here...Natural Health Techniques, Dry Brushing ... It even claims that it reduces cellulite, SCORE!

Tanning:  I know that the sun has become public enemy #1 because of skin cancer.  I won't even talk about the evils of fake n baking.  However exposure to UV is known to help psoriasis.  One of my dermatologists suggested I spend at least 20 minutes in the sun every day and to expose as much affected area as possible.  As much as I love being naked my neighbors don't appreciate my nakedness in the name of treating my psoriasis.  My Dr said at that point that tanning for 10-15 minutes a few times a week would be a acceptable substitute.

These are just a few that I personally have tried with some success.  I'm pretty sure I will soon be naked sunbathing, then dry brushing my whole body, followed by a soak in a sweet smelling oil bath, then slathering head to toe with Brazil nut butter and wrapping myself like a freaky mummy in saran wrap for the night.

No, there will not be any pictures of me wrapped in saran wrap head to toe.

Saturday, August 18, 2012

Sleeping on the job.

Yesterday I came on here a few times, but just couldn't focus long enough to actually come up with something to say so I went back to bed.  I slept the whole day away.  It was the only escape I could find for the pain I was in.  These storms are killing me! 

Today I do feel a bit better.  I feel a kind of like that after fender bender pain.  When you see the accident coming so your whole body clenches up.  The next day you ache everywhere.  You aren't injured, but that adrenaline surge made you tighten every muscle in preparation.  I think it will be another day on the couch.  At least I'm not missing yet another day of work.  I'd really like to get the energy up to go to the Trade days in McKinney.  I need to find my honey a birthday present.

Now on to something else.  I spent quite a bit of time talking to my oldest daughter the other day about what we both want to do when we grow up.  She's 20 and attending LSU.  The whole world is at her fingertips.  I realize she will probably change direction a few times between now and graduation, but she is focused on getting an education.  I on the other hand at 40 have NO idea what I want to do when I grow up.  People have suggested I do something with cooking, but I don't think I have the energy to do something like a restaurant.  It's also been suggested I do some kind of event planning.  Now this really appeals to me.  Something that I enjoy that I can be over productive on good days and slow down a bit on bad days.  My daughter tells me I should do some kind of counseling or life coaching.  I suppose in some ways I have the world at my fingertips as well. 

At the end of the day every day above ground is a good day.  Hopefully I have decades above ground to find myself.

Thursday, August 16, 2012

Doctor, Doctor!!!

Today I went to see my favorite Rheumatologist in the whole world.  I asked him if I could use his name here and offered him the opportunity to take a gander at my little spot in cyberspace before agreeing or denying me use of his name.  He said "What are you going to say about me?".  I just raised my eyebrow and smiled.  He said "Sure, OK." and laughed at me. 

So let me introduce you to my Rheumatologist Dr. John Lavery.  If you are looking for a Rheumatologist you can find his info here.  I can't say enough good things about him and his practice. 

I'll begin my endorsement by telling you about how I found him.  I had been with my previous Rheumatologist for about 3 years.  We had been through the standard path of care that most Dr's follow for PA.  I was generally pleased with her level of care and her staff.  The problem arose when I started needing stronger pain meds.  I've been on pain meds for about 15 years now.  I've managed to stay on minimal dosage of narcotics for all this time by switching medications occasionally.  When one med stops working I go to another for 6 months or a year and then can go back to the original.  For me vicodin is my staple med.  Every few years I need a vicodin vacation and will switch to percocet for 6 months to a year.  Then back to minimum dose of vicodin.  At any rate my previous Dr had decided she was absolutely not doing any triple script prescriptions for anyone.  Now I understand this decision as a way to protect her practice from abuse and suspicion, but for me continually raising my dosage for vicodin is just not an option.  I am not going to be getting better, and  raising the dosage leads to becoming immune to the higher dosage and so on and so on.  Before long you are hooked on high dosage of vicodin and it's not effective as a pain diversion.  In fact it becomes necessary to function because you are hooked.  I called around to as many Rheumatologists as were in driving distance that were approved by my insurance.  I made appointments with 4 of them that were accepting new patients.  Dr. Lavery happened to be the first with an opening.  I was ready to pay to interview each of these Dr's.  I made it very clear I was making this appointment not for care, but to interview the Dr and get a feeling of how their practice is run.

I arrived at Dr. Lavery's office and explained again why I was there.  He sat down with me and I explained my reason for looking for a new Dr.  He understood my reasoning for wanting to maintain low dosage for pain meds.  He told me he was agreeable to narcotic medications as long as I was being a productive member of society and it continued help me live a functioning life rather than impede my ability to function.  We also discussed his willingness to try alternative therapies.  I'm not exactly a new age bare foot hippy, but I do believe that there are holistic and natural remedies and aids that many Dr's will outright dismiss because it's not the cutting edge of science or not a medication.  I decided before we were done that this was the Dr for me.  He didn't make me feel like I was pharmaceutical shopping because I wanted to discuss narcotics.  He didn't make me feel like an idiot because I was interested in alternative therapies.  He didn't minimize my illness because I was under 40.  The final thing that made me realize he was going to look out for my best interest was that when I went to pay for my visit he said there was no charge.   

Dr. Lavery and I have been in this Dr/patient relationship for about 3 years now.  I see him about every 3 months no matter what.  We talk about how I'm doing on whatever therapy I am on.  It is a discussion, not a dictation.  When I decided that Remicade was more of a hindrance to my health than a help to my arthritis, he supported my decision to stop it.  When I went through a phase of trying every vitamin suggested by every web site on PA he supported it and made suggestions on dosages.  When I'm at the point that there really isn't anything more he can do at this time he's honest about that and focuses on making more comfortable rather than taking it as a personal failure.

I guess the reason for today's blog is to highlight the importance of that Dr/patient relationship.  Take the time to find the right Dr for you.  I know how expensive it is to pay co-pays, but it's worth every penny to pay to interview your Dr BEFORE you receive care.  If you are with the wrong Dr for you, you are wasting money every time you go to them because you are not getting the best care for you.  Also understand that your Dr works for you, not the other way around.  Yes they are the expert, but you are paying them for a service.  If you are not understanding what's going on with your care, are not getting the time you need to discuss options, or are not being taken seriously you are not with the right Dr for you.  You can fire your Dr!

Finally if Dr. Lavery or his staff ever stumble across this, THANK YOU!  Thank you for being an amazing group of people and for providing awesome care for me every time.

Wednesday, August 15, 2012

Momma needs at new pair of shoes!

With Lottery fever on high today because of the Powerball reaching 320 million annuitized, I thought I would do some day dreaming.  I know I will win the lottery one of these days.  How could I not??  Look at my luck to this point.  Of the world wide population 2-3% have Psoriasis.  Of that group 10-30% develop Psoriatic Arthritis.  If this was a numbers game I'm damn lucky!

I think most people like to imagine the what ifs of winning a huge windfall of money.  We all like to believe we'd be gracious and giving.  We have this deluded cloud of thought that we would be responsible with this bank roll.  We'd probably be quite crazy with a small portion of it and do things like rolling on a bed covered with hundred dollar bills while drinking champagne and eating caviar.  We'd also of course take care of our family and friends. 

I call bull shit!  I for one wouldn't let anyone know about it.  Are you kidding me?  My kids would have an anonymous donor pay for their college, and I might set up a trust fund for them for when they turn 40.  Now I'm not saying I would hoard all of it, but I sure wouldn't announce it.  I'm an antisocial introvert with rude tendencies.  I sure don't want an entourage to keep me company or have people taking advantage of my girls because they might have money.

Now that that's out of the way, I have to wonder what would I do with such a windfall.  I know I would quit my job.  I would focus on my health and try all those holistic treatments for auto immuno disorders.  I might even sponsor a clinic for a doctor interested in experimenting with those treatments on a larger scale.  I'd put my kids through college so they can have a fruitful life on their own.  I'd buy a house.  I don't want a mansion because who wants to clean all that space.  I'm too cheap to pay someone to do it so just a moderate house is perfect for me.  My house would have a beautiful pool and lots of space to garden my organic veggies and herbs of course.  I'd probably invest the rest so I could live off of it and generations of my family could be supplemented from it. 

Yes I know not nearly as exciting as going on a gambling, coke fueled, sex orgy, but it's my dream. 

When I win tonight I'll still be back here tomorrow to blog.  So you'll just never know....

The boom boom pow!

This is just a quickie while I'm on my break..  As much pain and suffering that I endure because of DFW storms, how can I be anything but awe struck by this greatness??  This is a photo of the storm that rolled through last night.   All I can say is WOW!

Tuesday, August 14, 2012

Let me introduce you to......


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. 

Monday, August 13, 2012

Let them eat steak!

Today I am not going to mention the P word or the A word.  Today I am going to talk about one of my favorite activities, cooking!  Experimental cooking to be exact.  When I left home fresh out of high school, newly married and being promptly relocated to the UK I was an expert at cooking ramen.  My other specialty was hamburger helper.  Yes I was the creme de la creme of convenience food chefs.  As  I got older and started worrying about the nutritional level of the food I was serving my growing family I started immersing myself in cookbooks and learning how to cook.  I started out doing everything to the letter of whatever a recipe called for.  Frankly it was pretty boring, but it gave me a chance to learn the basics. 

After a while I started getting experimental.  I tended to be pretty lucky that most my experiments were not only edible, but really damn good.  I realized I really enjoyed figuring out flavors and combinations of food.  I enjoyed subjecting my guinea pigs to whatever science project I had concocted.

Tonight I decided I was in an experimental mood so I got to searching in the fridge.  When I was at the store getting stuff for pineapple salsa for my friends birthday party the other day I found a couple beautiful grass fed boneless rib eyes.  Little chucks of flesh from heaven.  So these beautiful juicy steaks were staring at me screaming that they needed to be cooked up.  I had saved back a bit of pineapple salsa, and had a small chunk of feta cheese desperate for friends.  That decided it then and there!  Jerk spice rubbed steaks with pineapple salsa and feta it will be. 

I either make my spice mixtures or get the pre-made ones salt free as often as possible.  This is about the best jerk seasoning I've tried.  Cover both sides of the steak and rub it into the meat, then add just a touch of sea salt.  Under the broiler it goes!  I broiled it for about 7 minutes a side.  This was a bit more done than I usually like.  I haven't broiled grass fed steaks before, and because they have a lot less fat they don't need to cook quite as long.  That being said it was a perfect medium and still just as juicy and melt in your mouth greatness as ever.

This is what I ended up with.  It was AMAZING!

For those that are interested in the pineapple salsa recipe, here ya go!

1/2 a fresh pineapple
1/2 a red onion
1 red pepper
1 jalapeno
2 cloves of garlic
a handful of cilantro
juice of 1 lime
salt to taste

Dice everything up and throw it in a bowl.  Squeeze the lime juice over it, sprinkle with salt, stir it up and eat!
I usually like to let mine sit and meld all the flavors for at least a few hours, but it is good right after making.  Just an FYI this salsa is REALLY good eaten with ginger cookies rather than tortilla chips.

And there we are.  A celebration of one of my passions.  Happy cooking, and remember that some days it's good to detach and focus on something you enjoy no matter what the rest of your day was like.

Sunday, August 12, 2012

Time to face the music.

I was looking at my sick days for the year the other day and counted them all up.  I am sitting at 18 days in the last year.  16 days of that are arthritis days.  That doesn't include days I took vacation days rather than sick days.  It's time to face the music and start thinking about applying for Family Medical Leave Act (FMLA).  I haven't done much research on it yet.  Honestly I have been stalling hoping it wasn't going to be a reality.  One of those if you ignore it, it doesn't exist kind of things, but unfortunately it does exist. 

I talked to a friend the other day who has Chron's disease.  She suggested I look into FMLA.  She is on it, and said it offers a level of protection against being discriminated against at work because of your illness or disability.  It kind of feels like giving up to admit I am at the point that I need to go on FMLA, but the truth of the matter is I am at that point.  So Thursday when I go to see my Dr I am going to have him help me fill out the paperwork.  I am going to give in.

I wish I didn't have this decision to make.  I've known it would come to this at some point.  Just as I know the day will come when I can't work.  It doesn't make the path any less rocky when you know those rocks are waiting for you to climb over them.

I guess it's time to start doing that research.  Let the fun begin!

Happy Birthday!

Tonight we went to celebrate my friend's 30'th birthday.  I honestly don't remember my 30th.  Not because it was a wild party, but because the party way so lacking.  At any rate I'm drunk blogging.  Just to have full disclosure. 

I have 2 friends who were at the party tonight.  One has RA and one has psoriasis.  Seeing these friends always reminds me of the fact that I am not alone in my predicament.  My psoriasis friend is fairly new to the diagnosis.  Over the last year we have discussed some of the early treatment options and all of them have a scary side.  It's always hard to grasp that the treatment can actually be worse than the cure.  That is the reality with many of the auto immuno disorders. To find relief you have to gamble something else. 

The RA friend always amazes me.  I see her and know  that as hard as my day is her's is probably worse than mine yet she's always an advocate for the possible.  I aspire to have that level of aspiration for helping others. 

We   usually run into each other at these types of functions.  We all live in a very small world.  I guess the theme for tonight's brief blog is I'm thankful for my friends.  These two especially lately.  Misery does love company, but not because we all love to be miserable.  We love the empathy because it means in the dark despairing world of immuno dysfunctional disorders we are not alone.  There is someone out there who gets it.

Friday, August 10, 2012

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.

Wednesday, August 8, 2012

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.

Tuesday, August 7, 2012

April Showers bring May flowers, but it's August!

I am one of those people who are sensitive to atmospheric change.  This means that when storms are building my pain levels increase the more they build.  Usually I dread spring because in DFW we are  bombarded with storms.  Somehow this year it seems like storm season started early and it doesn't seem to be ending.  For 2-3 days now we've had sporadic storms.  They are all around us.  This means the arthritis is constantly flared up.  Being it is now a few days into this I am starting to get worn down.  I try to stay positive about things.  Tell myself it will get better soon.  Practice my deep cleansing breathing techniques.  Count down the minutes at work till I can get home to take some pain meds.  This also leads to my inner worry wart rearing it's ugly head.

I am realistic that I have a limited amount of time that I can continue working, at least in my field.  I had hoped I could make it about 5 more years to get my kids through college and pay off my car.  Days like today I can't imagine making it through the year let alone through 5.  I also don't know what I want to do when I grow up.  I've had a good run as a Metrologist.  I'm good at what I do.  I am just very aware that every year I am more and more limited of what I can do.  The stiffness in my hands impedes my ability to do many things already, lifting things is difficult and aggravates my joints, and just getting out of bed to go to work is challenging most days and just not going to happen more and more frequently.

I am fortunate that I am a service connected disabled vet.  No not fortunate in that I got hurt in the Army, but that I have options.  I have the option of using vocational rehab through the VA, but what is it I want to do?  What can I do that I won't hate, that I can make a living at, and that I will continue being able to do as my condition worsens.  So many questions to swirl through my pain overloaded brain.

After it's all said and done and I waste hours and days worrying I remind myself that worrying is just that.  A waste of time.  I can't control the progression of my arthritis, I can't control the future.  What I can do is be as productive and positive today as I can be.  Remind myself of my blessings.  My loving and supportive family, a boyfriend who treats me like a princess even when I'm the evil witch, a good job in this horrendous economy, and a sharp mind even on days it likes to throw all the worst case scenarios at me.  I am blessed today.  What tomorrow brings will continue to be a mystery and an adventure.

Monday, August 6, 2012

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?

Sunday, August 5, 2012

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.

Saturday, August 4, 2012

It puts the lotion on its' skin or else it gets the hose again...

Happy Saturday!  A little "Silence of the Lambs" humor with my tea and morning smoke.  I'm sitting on my patio with FAB (Fat Ass Bitch aka Thunder the cat) enjoying a "cool" August Texas morning. As I'm telling her to stop chasing the geckos I look down and realize my big toe is somehow different. Still being a bit flared up from yesterday's arthritis bout my flexibility is pretty limited, but my lasik perfected eyes definitely notice something.  I sit in my chair, and lean over to get a closer look.  OH MY GOD! There's NO Psoriasis on THAT toe! 

Now I realize to those of you who don't have Psoriasis and just read this to be amused by my comical musings that this may not seem like such a big deal, but this is HUGE.  I have Psoriasis everywhere and I mean EVERYWHERE.  Of the 4 main recognized forms of Psoriasis I have 3 at any given time and often all at the same time.  This toe a week ago was covered in scales.

 Most of us have had acne at some point in our lives.  Imagine you suddenly woke up one day and you were broke out in the worst way ALL over your face.  I don't mean that monthly geyser you get on your forehead, or the occasional spot because you're stressed or have been eating too much fried food.  I mean everywhere.  You try everything to get rid of the acne.  You do all the over the counter and old wives tales.  Your friends send over the witch hazel, aspirin masks, advise you to drink more water.  You even go to the dermatologist for the $100 cream that clears everyone up.  All this and nothing improves.  You go months, years with the zits of Olympus all over your face.  Your friends are kind enough to look past it, and still offer some nugget of advice they happen to run across on the Internet or see on a late night commercial.  Even with all their support and good intentioned advice you can still see the pity in their faces.  You still are mortified to look at your own face even with a level of acceptance that it isn't your fault and there really isn't a lot you can do about it.  Now one day your doctor calls and announces the newest greatest medical breakthrough of all time.  He tells you all the great and wonderful things about it.  It will clear up your face, it will keep you from getting another volcanous breakout, and you only have to do it once a week. Oh boy this sounds awesome!  I gotta have this!  I may have some scarring to cover up, but I might just get my beautiful face back!  So you agree that this is the thing you must have.  Now comes the bad news.  Firstly, you will have to do this medication for the rest of your life or till your body decides it just doesn't like it anymore.  Oh and then there's the cost.  It's a mere $1000 a treatment and your insurance only covers 80%. Yes that's $1000/wk.  Then come the potential side effects.  It is really hard on your liver, your risk of infection is increased a lot, it can cause blood cancers with prolonged use.  That's just a few on the shopping list of horrors.  You think about it long and hard and decide it's worth the risk.  You invest in the first month of treatment and hope for something, anything to improve.  Then about a week into your treatment you notice that the whole section from the edge of your eyebrow to your ear is completely clear of zits.  Most people won't notice the difference because there is so much eruptive pus on the rest of your face, but YOU notice it, and it's HUGE.

This is kind of  how it feels to realize I have no psoriasis on my big toe.  I started Humira a little over a week ago and it's the first real indication it is causing an impact on my condition.  This isn't my first ride on the Biological roller coaster.  I have tried Enbrel and it was too devastating on my immune system so I would get pneumonia every time I heard someone sneeze. Even if it was over the phone.  I had a successful run with Remicade for about 5 years.  It stopped working on my joints even at the max dose and frequency so I decided it wasn't worth the risks.  I've been biological free for a little over a year and the Dr thought we should try Humira.  I haven't noticed any bad side effects yet so that's positive.  I do miss my Jack and Diet Coke, but if it will help I'll sacrifice that until we find out how it's messing with my liver.  This is my last option for biologicals.  There is one more on the market, but it's still pretty new and my insurance won't cover it yet.  Essentially it's my last hope for a while. 

Here's to hope inspired by my big toe!  What a beautiful big toe it is!

Information on Enbrel 
Information on Remicade

Friday, August 3, 2012

Ready, set GO......ohhhh now wait a minute....

Here I am again on the couch when I should be at work.  I have been described as bull headed by people who really love and care about me, and that isn't necessarily a complimentary trait to have when you have PA.

We are in the process of reorganizing the lab I work in.  It's been going on all week (I'm pretty sure it will NEVER be done).  Anywho, this reorganization involves a lot of moving of heavy equipment, packing, moving and unpacking files and manuals, cleaning etc.  I refuse to let my coworkers be stuck with all the heavy lifting while I sit back, sip my diet coke and watch.  So I decide to take the lightest weight group, the files.  Yes, I packed 25 boxes about the size of cases of paper, loaded them each on a rolly cart, and piled them in the new designated area.  5 years ago this would have been something I considered a decent workout, but by no means the end of the day.  Just this process took me out for a whole day.  Yesterday I sat on my couch, hopped up on vicodin.  I really hate taking narcotics, but it's an unfortunate necessary evil for myself and many people with chronic pain conditions.  This morning I was feeling pretty good and rested (thanks to 15 hours on the couch)  I even got up early, made myself a pico and feta omelet, sipped on a strong chai tea, and shaved my legs while I took my shower!  Today is going to be a good arthritis day!! 

Once arriving at work I started in with the refiling of all those files.  Box after box I lugged them onto my rolly cart, filed them, flattened the box for the recycle bin, and started the process all over again.  About at box 5 I started noticing the familiar burn.  When I was in the army that burn was a good thing.  It meant you were pushing yourself to the max, building strength and endurance.  Now that burn is the precursor to a bad day.  I could feel my feet starting to swell, my shoulders and hips getting that deep in the joint pain and my lower back throbbing.  Due to that old Army mentality that my drill sergeants so dutifully programmed into my head I pushed through.  By box 10 my fingers were tingling, my toes were seizing up, and my feet had swollen enough that my flip flops were in danger of leaving permanent indentations in my feet.  I was pretty sure railroad workers were pounding those ginormous railroad nails into my hips, and my back could have been the base beat at a rave.  Yep over did it again so off to home we go.

On my way home I stopped at Tom Thumb since my day on the couch yesterday consumed all my bottled water.  Any of you that have spent time in DFW during the summer know that the water stinks when the heat starts rising.  I don't just mean the quality but it actually smells.  Something to do with algae in the reservoirs.  Now I'm not really a water snob.  I've drank out of the tap all over the world and survived to tell the story, but my boyfriend is a plumber and has convinced us we really need to drink bottled water.  All that is really neither here now there, but to say I needed water.  I get a stocker to help me load it into my cart (impromptu walker) and waddle my way to the front of the store. On the way I find Ben & Jerry's on sale (score!) so my slow trip from water to check out felt a bit like a blessing and a curse.  At the checkout the nice young man rings up my water and ice cream and of course asks if I'd like help out.  It always amuses me the expression I get when I say "yes, yes I would".  I probably should be insulted to some degree, but I am blessed with a dry, cynical, and sometimes cruel sense of humor.  I tell him I need help and I can see the almost double take, the scan up and down to see what could possibly be wrong with me, and the thought process across the boy's face that says he thinks I'm just a high maintenance lazy house wife.  There isn't anyone to help me right there so he announces my laziness over the intercom.  At this point I'm ready for a full on show of just how screwed up I am.  The poor kid who ended up helping me was either cursing the 20 minute walk to the 4th parking space from the door or thrilled that he got an extra break for the day.

And now here we are.. On the couch, vicodin consumed, Ben & Jerry's in the freezer missing yet another partial day at work.  Someday I'll learn not to "push through the pain".  Hopefully the Humira I started last week will kick in soon.  My daughter said last night that my skin looks better than it has in months so I have hope!

Info on Humira.. One of the biological medications used for PA.

Thursday, August 2, 2012

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!