Focusing on me.

I had my Rheumatology appointment today.  It was agreed that it was time to take some medical leave.  I am on leave for 3 months.  The hope being that in that time I can focus on my health and the Simponi might just kick in.  This is pretty much the last ditch effort to keep me employable.  At this moment I don't hold much hope, but maybe in a few weeks once I'm hopefully more rested and less stressed I will feel differently.

I have known this was coming.  Even yesterday I was positive this would be the result of today's appointment, but it still took the breath out of me when I left the Dr and had a moment alone in my car.  I had a good cry on the way home, and now I'm decided to just let myself feel.  I'll start dealing with reality tomorrow.

Being the holiday season is quickly approaching us I'll have lots of things to keep me occupied.  I'll need to set myself some kind of loose schedule to keep track of the days and not wallow in self pity.  How do others in this situation fill their time/track their time?  I am lucky that my misery has some company.  Not that either of us are really lucky we are each other's company, but I do feel fortunate that I know someone who's been through this before and who will help me with advice and emotional support any time I ask.

For now I'm off to watch some sappy chick flicks, ice my bursa that had the horse needle plunged into it and  maybe take a nap.  Tomorrow I will face reality and come up with some sort of plan.

Ohh the smell of tiger balm in the morning.

Here I am, yet another FMLA day.  I go to my Dr tomorrow and I have the medical leave form in my purse for him to fill out.  I'm not totally ready to admit defeat so I think I will ask him to put 90 days on my form in hopes that Simponi will kick in.  If that 90 days doesn't show improvement I will concede to my fate and start the SS disability process.  I am so fortunate my  employer offers disability options that allow for a cushion between working and starting SS disability.  I don't know what I would do without it.

Now I'm sitting in bed, tiger balm coating my lower back, knees and feet.  If I put my head under the covers for long it's like a Vick's vapor cloud taking over.  At least my sinuses will be nice and clear.

Hope everyone has a good day!  Since many of my readers are chronic pain people too, here's to minimal pain for at least part of your day!

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!

Rub a dub dub, I'm blogging from the tub.

Yes, today's blog is brought to you live from my bathtub   Today was the second day I have had to come home because of arthritis.  My knees, feet, hands and back are the culprits today.  My hips hurt as well, but it feels more like that is bursa related than arthritis related.  It's sad I've had these afflictions long enough to actually be able to differentiate types of pain.  I've been passing a lot of time this afternoon reading some older posts on Inspire.com and a constant theme, especially with the Psoriasis group, is the food vs medicine debate.  Some posts are nearly fanatical about it.

I thought I would give some of my personal experience in that area.  Having had psoriasis as long as I have, I have probably tried just about every OTC, prescription, and alternative method I've ever read.  I have done many of them for PA as well, but it's still in the trial and error phase even with almost a decade of affliction.

I'll start with some background.  I was diagnosed with psoriasis in 1998 after a bad reaction to taking the Anthrax vaccine while in the Army caused my immune system to go into hyper drive. At that time there was still very little known about psoriasis to include causes and treatments.  The general route of care was topical agents such as lotions and steroid creams.  Occasionally for a particularly bad flare up a steroid shot would be administered.  Tar was a big seller to the psoriasis crowd and it did give many people, myself included, some relief.  At the time I was diagnosed I had a pretty healthy diet and I exercised more than regularly.  I did smoke a lot and drink alcohol regularly.

So there you have the beginning of the journey which I will be on for the rest of my life.  I couldn't give you names of all the prescription topical treatments I have tried.  If it's out there and legal I have been prescribed it and used it.  I have been on every biological available for Psoriatic Arthritis.  Enbrel worked awesome on my psoriasis (didn't have arthritis diagnosed yet at that time), but it depleted my immune system so much that I went from never getting sick to pneumonia that took me out for 2 weeks and getting every cold and viral malady that passed within 100 feet of me.  Methotrexate worked well on it's own and in combination with Remicade, but started making me very sick so I quit taking it.  I had a really good 5 year run on Remicade and it stopped working on my joints so I decided that the benefits no longer outweighed the risks.  I was biological free for a little over a year and sustaining some level of comfort some of the time with Vicodin.  Then my arthritis kicked into high gear.  I tried a run with sulfasalazine to avoid going onto Biologicals again, but it did nothing.  Tried methotrexate again, but I was living next to the porcelain god for at least 24 hours after taking my shot from that.  My skin was already thrashed and cracking, but the arthritis attack was what sent me back to biologicals.  Humira started working on my skin almost immediately, but about a week into it I started losing hair by the handful,  getting mouth sores so severe it felt like I had been eating glass, developed hives and some other rather nasty side effects.  My Dr took me off that and now I am on the last hope which is Simponi.  My side effects have been generally mild, nausea, dizziness, but I have also not had any improvement of my psoriasis or arthritis.  The psoriasis is actually worse than when I started.  I have resorted to using a topical steroid to get minimal relief from the cracking and bleeding, but I itch like I've been rolling in poison ivy.  I also got a TDAP vaccine which took me out for most of a week from work because of getting almost all of the potential "mild" side effects.  Mild my ass!  I think that pretty much covers the pharmaceutical side of things.

In this whole process I have tried the holistic treatments with mixed results.  Dead sea salt, occlusion with natural nut butters and oils, high doses of vitamin and mineral supplements, and food exclusion.  I am very fortunate to have a forward thinking Rheumatologist who is willing to work with the treatments you want to pursue.  He is knowledgeable of both pharmaceutical and holistic treatments out there and even has some alternative treatments he'll let people like me who are at the last option try.

As for diet I've tried most of those too.  I've done paleo, juice fast, all whole foods, all raw foods, exclusion, and many more.  For me I don't seem to have food triggers.  I do feel better when I eat a well rounded diet with minimal processed foods.  I try to stick with organics, local meats, produce, dairy and honey.  I love food so for me turning what is available to me into something fantastic is an adventure.  It doesn't however improve my psoriasis or my psoriatic arthritis.

To the people out there who swear by diet controlled psoriasis, I am so glad that you have found relief.  Perhaps though the reality is that your psoriasis is just like the rest of us in that it is immune related and you are ALLERGIC to foods.  Rather than hives or stomach upset your immune system responds with psoriasis. Each of us with psoriasis and psoriatic arthritis have some reason that our immune system has begun to attack us.  Not all of us are food.  That some of us are food issues is really a blessing.

At the end of the day my take on drugs vs food is that both are vitally essential for us to live the best life we can.  You have to feed your body healthy food to be as healthy as you can be.  For some, like me, being healthy as we can be still means arthritis flares (and arthritis all the time) and psoriasis everywhere.

Inspire me!

So I found another Psoriasis and PA group that I have been enjoying reading the last few days.  Inspire.com has many health/disease related boards and a place I'd recommend to check out.

Even reading the posts on this web site it occurred to me just how much misinformation and lack of information is out there.  Granted this being an autoimmune disorder it can be extremely hard to pin down a diagnosis let alone find a workable treatment, but some things I have read just today have been total malarkey.  It saddens me that people will spout uninformed and uneducated things as the end all fact.  That being said I understand that each body is different so each person has their own chemistry to find the antidote or measure of relief for.  On the other side of that coin is the amazing community and support that is available.  So many people who are sympathetic to each other.  I saw one poster who had been diagnosed with PA 30+ years ago giving tips and advice to someone who had recently been diagnosed. That is truly inspirational if you ask me.

I don't really have a topic to discuss tonight, but I did want to share the web site.  Even if you have a illness that is not PA or psoriasis check it out.  There is a plethora of afflictions there.  Also Hello to the 30 or so inspire.com readers who came over to check me out.  I was a bit shocked to see my stats today and find they all came from there.

Raindrops on Saturday

It's a rainy Saturday in the DFW.  When I started feeling the rain pain yesterday morning I looked at the radar and this front is a doozey.  It went from the edge of the DFW west to almost Tucson, AZ.  For those that aren't up on their geography of the US it's fricken HUGE!

Since I'm TV'd out after 4 days of pretty much living on my couch with the fall out of the TDAP vaccine I decided I would so some surfing on the net. I noticed this morning that my glands were swollen and I had a mild sore throat.  Not enough to panic, but I realized that about a week into my shot last month I felt the same.  So off to research Simponi some more.  Apparently it is a typical, but not common side effect (whatever that means).  I found a message board I hadn't found before that covers many chronic diseases, and has a PA specific area.  I got to reading it, and the stories about people with Psoriatic Arthritis and Psoriasis hit way too close to home.  The people who feel exactly the way I do about running out of options, frustration, fear, on their last hope with current medications to be able to work and live functioning lives is just heart breaking.

One of the saddest things is in order to properly focus on your illness you really need to not be employed.  Reduce stress, prepare/eat whole natural foods, intensive skin care, and rest along with any number of other benefiting factors are what you need to do to reduce your body's attack on itself.  In order to financially support those things AND maintain medical and pharmaceutical care you need to have a job.  Knowing that your options are running out in a time that you can actually imagine is terrifying.  It is all a vicious circle.

As to today's video selections they really have nothing to do with anything besides that Rhianna was going through my head when I was listening to the rain on the patio.  These songs actually remind me of the 2 Nicole's so here they are for them.  They each know which one is for which.  Love and miss you both!!  Wish you were here to hold my umbrella puddin butt!

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

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

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

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

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