Saturday, December 29, 2012

New Life not just New Year

Happy Holiday's from Phoenix!  I hope everyone enjoyed their chosen celebrations and festivities.  I am really having a great time with my family.

With the new year quickly approaching I know many of us make New Year's Resolutions.  I've never been one to make them.  I believe every day is a good day to start fresh and move forward so making a point of doing it because it happens to be January 1st seems silly to me.  This is compounded by the fact that most people have abandoned their resolutions by the middle of January.

All that being said I've done some thinking the last few weeks.  This past year has been a year of acceptance for me.  I've come to accept that many things will never be the same for me.  Acceptance isn't always a let down, but it can be a  struggle to reach.  In my pondering this week I've also come to realize that many of the most important things in my life (besides my family) will just take a different course of action in many cases.  In some cases things will actually be the same.  In a discussion with someone the other day about helping the homeless I realized that my past habit of keeping fast food gift cards, water, and personal hygiene kits to give out is still something I can do.  I may not be able to do my work that I trained to do, but there are many things that I can do at my own pace such as write, do arts/crafts, create recipes, and counsel people through their struggles with Psoriasis and Psoriatic Arthritis.  Yes those things will have to be at a moderated pace to allow for my disease and it's fluctuations.  Yes I may not be able to make money or as much regular income from them, but these are all things I can do to help support myself and others.  I've always been a resourceful person so now that doesn't change.

So for me this New Year I won't focus on a new year resolution, but I will be focusing on a New Life path.  I will have struggles. I will trip and fall occasionally.  I will also succeed and find happiness along the way as well.

May the New Year bring you joy, happiness and fulfillment no matter how you choose to go forward.  Remember that no matter what, tomorrow IS another day!

Happy New Year!!!

My oldest Daughter and I enjoying Apache Junction.

One of the many ginormous cacti.

The Superstition Mountains

Another view of the Superstition Mountains.

Tuesday, December 18, 2012

Greetings from Phoenix!

My oldest daughter and I are home for the holidays!  I'm really tired after the drive, but my joints feel SO much better (as always) from the desert climate.

I went to see Dr. Lavery last week and have officially decided to go on disability.  My skin was TERRIBLE when I went in.  This is what my hand looked like, and my feet, knees, and elbows were equally bad.
You can even see how sausagey my hands have gotten.  My swelling has improved since starting Arava, but I didn't really realize how much constant swelling I had because I see it every day.  He prescribed me Betamethasone dipropionate, a steroid topical cream, and referred me to a dermatologist.  We are pretty much at the end of options though for treatment.  I am going to see if the Derm can get me started on Stelara (approved for Psoriasis, in clinical trials for Psoriatic Arthritis), but I can't get an appointment till I get back from Phoenix.  It is also questionable if the insurance will approve it because I have Psoriatic Arthritis.  ANYWAY, I've been using the steroid since Thursday and my skin is much better.  I'll take a pic to insert later so you can see the improvement after 5 days.  The cracking has stopped, and I do still have some scaling, but it isn't coming off in sheets of skin anymore.  My daughter also got me some Dream Cream from Lush to try.  I put some on one hand today and it has improved even more and is very soothing.  I'll probably quit the steroid tomorrow and just use the Dream Cream the rest of my trip unless it flares again.

I'll try to remember to come say hi occasionally over the next 3 weeks, but you'll have to forgive me if vacation outweighs blogging.

Hope everyone has a wonderful Christmas!

Sunday, December 9, 2012

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

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

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

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

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

Monday, November 19, 2012

Soap Nuts and Felted Wool Balls

I decided to try a new laundry routine. Because my skin has been so irritated lately I've been looking for chemical/artificial scent free alternatives to my usual products. To start I went to Amazon.  

Soap Nuts are actually a berry.  They produce a natural soap.  I got the trial pack 10 load size to try.  Felted Wool Balls are exactly what they say they are.  Balls of wool that has been felted.  They are used as a alternative to fabric softener.

So I did a load last night and I am very happy with the results.  My laundry smelled clean when I took it out of the washer.  I didn't have any extreme laundry issues, but there was no stains, dirty spots, or color bleeding left behind.  I threw it all in the dryer with my 3 felted wool balls and set the dryer for it's normal cycle.  I will preface this with I have an old dryer.  It usually takes 2-3 cycles to get my laundry dry.  With the felted wool balls my laundry was dry, soft, no static, and all in ONE cycle!

Lastly the soap nuts are biodegradable and compost able!  If you are a composter throw them suckers in your compost heap when you are done with them.

I give these products all my scaly sausagey toes and fingers up!

Now to give you an idea of costs. Felted wool balls on Amazon were 19.95US (I know a bit costly for a laundry product), but are supposed to last for YEARS.  With the better drying time I'm also saving electricity SCORE!  The sample size of 6 soap nuts which should be good for 10 loads was 6.77US.  It is a bit costly for 10 loads, but I didn't want to commit to a pound of soap nuts and then find out I hated them and be irritated about throwing them away.  I'm cheap and get very stressed about wasting my things.  My next order will be the 1 pound container which is 21.95US and should be good for 200 loads.  The site does recommend if you have a front load washer that you get the soap nut oil because the buts need the agitation to work.  I would think that if you throw them in the barrel with your clothes that they would work fine, but since I have the dinosaur washer I'll leave that to you trendy front loaders to experiment with.

I am going to off the interwebs for the most part this week due to traveling to Baton Rouge, LA to see my oldest child.  It seems like FOREVER since I've seen her besides on Skype.  I'm SO excited.

To those of my readers who are from the US Happy Thanksgiving!  See you in a week or so!

Monday, November 12, 2012

Itch Itch Itch...

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

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

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

Wednesday, November 7, 2012

How can more naps be bad???

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

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

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

Tuesday, November 6, 2012

I'm going to take a break..

Due to holiday prep (I'm broke and am crafting a lot of my gifts), writing my book, a lot of traveling, and general holiday mayhem in general I will be blogging less for the next 10 weeks.  I'll commit to at least 1 a week during this time, and in mid January when I'm back from PHX I'll be back to my normal chatty self, I promise :)

I'll leave you with my daughter's "baby's 21st Christmas" ornament. I get her a new ornament (or 2 or 10) every year.

Friday, November 2, 2012

Yank my joints out all "predator style" and stuff

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

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

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

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

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

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

Wednesday, October 31, 2012

Happy Halloween!

Halloween has always been one of my favorite holidays.  I'm not a big costume person, but I like the ghosts, witches, goblins, zombies, orange, purple, black.  I could go on and on.  I love making my house all Halloweeny.  When my youngest daughter moved out a few months ago I gave her all our Halloween decorations because it's her favorite holiday as well.  So I've been looking for good deals the last month or so, and though my decor is minimal I'd like to think it's "classy".  OK, classy for me hahahaha.  I'll be haunting all the stores for clearance Halloween next week to see if I can find some "I'll die if I don't have that" super deals.

I have an appointment with Dr Lavery tomorrow to see if we can find the cause of my "shortness of breath". I kind of feel like I should have just kept smoking.  I miss smoking even if I don't miss feeling like I've been licking the cat box every morning or hacking up yuck.  I also know I stunk because of it because I can smell the stink now on anyone that smokes.  I guess I don't really miss that.  Not high up on the sexy scale there is it?  At any rate I'm not smoking and I miss the act of smoking.

I have also come to accept that I probably won't be returning to work in January.  I will be discussing filing for Federal Disability with the Dr tomorrow too.  In an effort not to have a huge pity party about this I have been dream real estate shopping for a house in Phoenix.  I've decided I'd really love one of the small houses that are there from the 40s-60s.  I love the architecture of these houses.  They are in my price range even with the electrical and plumbing updated.  I think when I am there in December for Christmas I'll see if my daddy will do some driving around with me to see what areas these houses are in.  If I can find something in a safe neighborhood that has the safety update done AND in my price range it would be awesomesauce!!!  I'm not ready to buy yet, but I'm a planner.

I'll be sure to come back on after my appointment tomorrow and let you all know what is going on, or at least as much as I know.  Have a happy and safe (and a little creepy) Halloween!

Monday, October 29, 2012

Yeah, I'm plagiarizing myself!

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

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

Sunday, October 28, 2012

I just need to breathe

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

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

Thursday, October 25, 2012

Here comes winter.

Now I realize that temps in the 40's are NOT that cold, but I've lived in Texas for 10 years now and have developed thin southerner skin.  Cold does not usually bother my arthritis, but winter is always a bad time for my psoriasis.  The air is generally dryer in general, and having heat on in the house on top of that just sucks any moisture there is out of your skin.  I am not looking forward to it to say the least.  My skin is already worse than it has ever been as it is.

I was reading a post on Inspire this morning.  It was about the whole health benefit for chronic/immune disorders, specifically emotional well being and it's effect on your total health.  Part of having this illness is that people don't understand how devastating it can be because you look fairly normal.  Everyone has some relation or friend's relation who has psoriasis or eczema and they are fine.  Yes it's hard on your self esteem, but no reason for you to not be able to work!  What people don't understand is that the systemic swelling involved with Psoriatic Arthritis affects joints, tendons, ligaments, and according to recent studies organs and functioning systems such as circulatory.  What they also don't understand is it isn't isolated.  I don't have pain, swelling and damage isolated to my hands.  If it was I could probably find a way to adapt and be employable.  I do adapt every day.  ANYWAY I have wandered away from my purpose.  The benefit of emotional health.  Since I have been home on medical leave I have noticed some things.  My physical health has not improved.  I had 1 good day, and I LOVED it, but day to day I am not having any improvement in my arthritis.  What has improved however is my state of mind.  I am getting sleep when I need it or when my body allows it.  Yes I am still having a lot of insomnia, but on days I do have insomnia I can sleep later or I can take a nap.  It does not dictate my level of functioning for the whole day or the whole week because I am sleep deprived.  My stress has reduced SO much.  I don't feel guilty about missing work, I don't worry about not getting my work done, I don't worry I am going to lose my job because of my absences, my worry has dropped and changed.  People ask how I'm doing, and I still generally just say, "I'm OK, how are you?".  The truth is that in my head I'm GREAT!  How do you explain that to people though?  So many people think this is all in your head anyway.  As usual I have developed pretty tough skin so I generally don't care what other people think.  I do wish I could educate people.  Someone call Phil Mickleson and Kim Kardashian and tell them to get with it to educate people.  We are the 1%! (ha ha couldn't resist with the political stuff going on right now)

At the end of the day I am glad I decided to go on medical leave.  I am realistic that my psoriatic arthritis has gotten to the point that I will probably not work a traditional job, especially metrology, again.  When it's all said and done even with my physical health in the crapper my mental health is good.  I am well rested and optimistic.  That is SO much better than I was a month ago.

Tuesday, October 23, 2012

Oh If everyday was like this.

Today was a good arthritis day.  It is one of those days that, though I have the normal morning stiffness, I feel relatively normal after about 2 hours.  Granted normal is a relative term, but for me normal enough that if I was working I could have done a full day.  I felt an unexpected level of guilt today because I am on medical leave, but experiencing an uncommon good day.  As I was walking through Whole Foods getting my weekly groceries it dawned on me that yes I'm having a good day, and yes I could have worked today, but 1 day in the last 30 is not employable.  It is not a glimmer of light.  It just happens to be a good day which I am SO grateful for.

Speaking of Whole Foods, Oh. My. God!. I think I had an orgasm in my mouth when I tried their made in house roast beef.  I am SUCH a roast beef snob.  If it has that weird rainbow glimmer that most processed meat has it makes me nauseated just looking at it.  This stuff was perfection.  They had 2 varieties and I went crazy and got a half pound of the italian herb rubbed roast beef.  Shaved so thin you could almost see through it.  It is worth every penny of the $16/lb they are charging for it.  Now keep in mind that my half pound of meat heaven is enough for me to have sandwiches or wraps all week.  That works out to about $1/day.  I worked out the total cost of my roast beef & provolone on sourdough with green pepper and red onion sammich.  It came to $1.40.  SO worth it.  Another bonus of whole foods is they let me get fresh loaves of bread in half loaves AND sliced for no extra cost.  I think my half loaf of fresh sourdough was $1.49.  I'll use a half a loaf in a week, but a whole loaf I throw half of it away.  I've tried freezing half, but it feels like I'm chewing rubber when I thaw it.

I guess I'm done discussing food and how much it costs to feed me for today.  I sure hope they have whole foods in the Phoenix area.  I am ok being a food snob when I'm only feeding me.  I am a whole food eating hippie food nazi dammit.  Deal with it!

So here's to hoping tomorrow will be 2 good days in a row.  Since we are expecting a weather front including rain on Thursday or Friday I'm enjoying any minute of mobility I can!

P.S. Here is my daughter and her best friend.  The crazy one belongs to me... ohhh like mother, like daughter :)

Monday, October 22, 2012


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

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

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

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

Thursday, October 18, 2012

It's poison time!

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

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

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

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

Tuesday, October 16, 2012

Thank God for Netflix and Pinterest!

Yesterday when I woke up I felt good.  My pain was at a manageable level, I had good energy, I felt positive, and when I got on the scale for my Monday weigh in I'd lost another 3 pounds.  I pretty much attributed it to the steroid shot my Dr had given me last week.  I get the shots for my bursa in my hip usually, but they tend to have the wonderful side effect of making my skin better and giving me some relief from arthritic swelling for a few weeks as well.  Apparently I was wrong.  I woke up this morning at 4 in pain.  I read for a few hours and finally dozed back to sleep at around 8, and slept a few more hours.  Now I am in full on flare.  My hands are stiff, the bridge of joints at the base of my toes on my left foot is swollen enough I can't wear shoes, my lower back is throbbing and my right shoulder feels like someone is sticking hot pokers in the joint.  So much for my grand plans of organizing today.  It is going to be a couch, heating pad, surf the net and watch netflix day.

This part of psoriatic arthritis is one of the things that is really hard for people to grasp.  Not only will it flare up out of nowhere  but you never know where it will flare up.  People think sick people are just sick.  Meaning that they are always sick the same way.  When someone says they have arthritis people understand there are affected joints.  They expect to see gnarled and swollen joints, but they expect it to be in a specified place.  They expect you to be able to know the ways you will be limited in specific terms.  It is hard for people to grasp that at 41 some days I can walk a mile, some days I can't even put shoes on, some days I can do things that are very fine detailed work requiring fine motor movements with my hands, some days my fingers are frozen into the claw or swollen so I can't open a jar.  It's not how sick is supposed to be defined in people's mind.  People like to have parameters to fit things into their specific boxes.  Psoriatic arthritis just doesn't play well in that box.

So after a good day yesterday, it's a couch day today.  I think I'll change out my wax melting smelly thing to a new scent.  Something sweet and spicy.  Netflix here I come!

Monday, October 15, 2012

Back to life.. back to reality..

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

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

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

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

Thursday, October 11, 2012

Follow the yellow brick road.

Who doesn't like (love) the Wizard of Oz?  It has some message for just about all of us of finding what we feel we have lost.  Most haven't really lost it, but just forgot what it was to begin with.  For me at this minute that thing is purpose.  I'm on the first day after having my medical leave approved and I know if this is going to be my next 3 months my next medical leave will be for mental issues rather than physical.  I did the obligatory sleeping in, had my cup or 3 of tea, sat on the porch and watched the birds, considered what to do for lunch since I slept through breakfast, had a discussion with the cat about global warming (she thinks it's a bunch of hooey by the way, her thoughts not mine), and thought about taking a shower so I don't stink when I do finally decide what to do with myself.

I've got some small projects around the house that I have been wanting to do like getting my stuff in my storage closet in those plastic stackable totes so when I move they will be easy to pack and stack.  That of course takes assistance to some degree so will probably not start till a Monday after I can have my boyfriend help me get the stuff out of it's current location.  I've also played with the idea of writing a cookbook for 1 for years.  I knew my time of empty nest was coming, and never really envisioned living with a significant other so figured I'd enjoy experimenting with that a bit.  I've also had a novel or series of novels bouncing around in my head.  With the popularity of Amazon Kindle marketplace I can self publish.  That project may very well take more than 3 months to get the first edition done so I'll probably wait till I'm on full on disability to tackle it, but I could at least get some outlines started.

I guess I need to find a direction.  I'll get a schedule of some sort started on Monday so I can keep track of my days and motivated to move to the next thing.  I'm a hope for the best, but prepare for the worst kind of gal so I've got a move to prepare for (in reality that's the best, but because of the worst).

Now I'm off to shower and laze around watching netflix till I have to take my car in for a warranty repair.  YEAH!

Wednesday, October 10, 2012

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.

Tuesday, October 9, 2012

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!

Sunday, October 7, 2012

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!

Thursday, October 4, 2012

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 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.

Wednesday, October 3, 2012

Inspire me!

So I found another Psoriasis and PA group that I have been enjoying reading the last few days. 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 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.

Saturday, September 29, 2012

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!

Thursday, September 27, 2012

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.

Sunday, September 23, 2012

One foot in front of the other.

I am feeling better emotionally.  I went and spent the weekend in Oklahoma with my honey.  I smoked way too many cigarettes.  I drank way too much diet coke.  I got to little sleep, and I gambled most of my birthday money.  All my bad habits rolled into one weekend.  However I feel much better.  Now I am prepared to move forward. It's one foot in front of the other time.

 My birthday is over so it's time for the annual refocus.  It's time to get prepared for Christmas.  I have NO idea what to give people this year.  Since I've been utilizing my FMLA my funds will be limited so I'm going to have to dig into my creative ju ju.  My psoriasis friend and I have decided to be craft buddies for the holidays.  We have both been combing through Pinterest looking for that "it" thing for the holidays.  I also need to start thinking about the annual ornament.  I have given my oldest daughter a Christmas ornament every year since she was 8, and have started the tradition with my boyfriend's grandkids.

So now being a crafty wench is my distraction to pain for the next few months.  Now if I could just get my craft room furnished and appropriate a sewing machine.  One foot in front of another, one day at a time.

Let the Christmas crafting begin!

Thursday, September 20, 2012

Happy Birthday to Me!

Today is my 41st Birthday!  Most people say I don't look my age, but I can tell you for sure my body feels SO much older.  My boyfriend was very sweet and threw me a surprise party.  I was truly surprised.

 I've had a lot of personal family stuff going on the last few weeks so I've kept to myself quite a bit as far as blogging goes.  I realize I do share many things that are personal, but some things are best kept off the Internet and this is one of them. Tonight though I was so thankful to my honey and friends for celebrating my birthday with me, but all I really wanted to do was crawl in bed, curl up in a ball and cry.  I'm officially at depressed.  My body is rebelling because of the stress, and I'm emotionally and physically worn out.  All the years of being a 1SG wife paid off tonight because I could put on my happy face and at least appear to enjoy the evening.  I know my friends put a lot of effort into surprising me and it really meant so much to me. Once I got on the road though I cried all the way home.  I've learned through my life to keep these things to myself and just get through them.  I will this time too, but it now is so much more than just feeling blue.  With my disease it manifests itself physically compounding the emotional pain into wrenching physical pain.

I've pulled myself together for now and am waiting for my Simponi shot to stabilize to the proper temperature so I can shoot myself with my monthly poison.  Hopefully I can get to sleep before the nausea starts.  If not it may be a long night of pity party and staying close to the porcelain god.  Tomorrow is a new day and I will remind myself of that until I wake up to it.  I just need to get to tomorrow.

Monday, September 17, 2012

Vampire Diaries

I'll admit it.  I'm hooked.  Thanks to Netflix I will probably get no sleep till I finish season 3.  It seems this season is all about teenagers drinking away their problems.  Oh how I wish I could have a Jack and diet coke.  It's been a hell of a week and I'd love to numb not just my body pain, but the emotional ache as well.

That being said how nice it would be to have a friend who could heal me.  I'd consider drinking blood even if it was a temporary fix.  Say a year or two of relief for an ounce of sucking blood.  Oh the lengths we will go to for the illusion of normalcy.  As it is we are willing to take drugs that have the potential to cause other severe health issues.  We are willing to put up with nausea, fatigue, brain fog, confusion, insomnia, and any other side effect just for some minimal bit of relief.  I can see the draw of a life of youth, beauty, and strength with the small trade off of never eating garlic again and sticking with the raw end of the meat plate.  I always liked my steak on the rare side anyway.

So since I can't live in vampire land I guess I'll take my chances with my next dose of Simponi.  I get my next shot on my birthday.  Happy birthday to me!!  My birthday weekend will probably be spent nauseated and dizzy.  YEAH!.  I don't notice that I am having any improvement in my first month of this newest miracle drug.  My skin continues to be worse than when I started.  In fact my skin hurts more than it ever has.  No amount of occlusion, oil baths, lotion, nut butter, and steroids has brought relief.  My joints don't seem to be any better or any worse.  They are just plain unhappy.  I will however keep trying this medicine in hopes that it will have a cumulative effect at least until December.  In January I go back to having to pay full price thanks to the beginning of the year out of pocket expenses that comes with having insurance.  I'm not going to pay over $1000 for a medication that isn't working.

Now I'm back to watching Vampire Diaries.  Oh the sex pots will follow me to my dreams (please).

Wednesday, September 12, 2012


The Ouroboros is a mythical snake or dragon who chases or eats it's own tail.  Many times stress and chronic disease makes me feel like I am that snake.  Having chronic health issues and pain cause stress, and stress causes many chronic health issues to flare up.  It can seem never ending.  I am very fortunate that in the scope of things my job is generally low stress.  Yes there are the occasional issues, but for the most part it's low maintenance.  Teenagers however can be very stressful, and this week has been stress in spades.  EVERYTHING hurts, and my skin feels like someone has been running a rusty rake over it and digging a ditch to China.  So starts the cycle.  This week will be one of those weeks that utilizing those coping mechanisms is so important.  Without those mental exercises and distractors the pain and stress can quickly seem insurmountable.

It is so important to know your own body for this reason.  Learn your body's responses to stressors.  Many times if you aren't paying attention it will sneak up on you and before you know it you can't fight it without completely withdrawing from life for a few days.  This of course causes more stress and guilt and so you are that Ouroboros.  As I've said before find your joy.  No matter what is going on find those things that allow you to detach and regroup so your mind and body can catch up.

So tonight here is to the Ouroboros.  To recognize that sometimes we are chasing our own tail, but in the same respect we are constantly learning ourselves and recreating our reality to function and live with our changed selves.

Monday, September 10, 2012

Back to reality.

So now I'm back to DFW, and back to work today.  Oh JOY!  My joints felt SO great while I was in Phoenix.  Now they are quickly returning to pre vacation swelling and pain.  It was nice while it lasted.

Today I thought I would talk about road trips.  I love my time on the road.  It's my place that I can go and go and go, and my arthritis might slow me down, but it doesn't stop me.  I'm not a big planner when it comes to these trips beyond a fuzzy time frame for leaving point a.  I've found 4 routes for DFW to Phoenix, and I don't decide till I'm on the road what way I'll go.

Here are my "rules" for road trips.

1. Eat well!  I make healthy finger foods for eating while I drive for the trip to Phoenix.  On my way there I'm in a hurry to get there so stops are limited to gas and restroom breaks.  No time to dawdle.  I stick to fruits, vegetables, both fresh and dried, lunch meat rolls (lunch meat, cheese, veggies rolled up like a burrito), salads with lots of cheese and nuts for protein.  I keep some chocolate for those moments when I'm feeling a little run down, and lots and lots of water and diet coke.  When you have an immuno issue you don't want to allow your body to go wonky because you aren't feeding it.  Make it a priority either with food you bring or with the stops you make.

2.Be safe.  I travel by myself a lot.  In fact the last 4 trips I've taken have been solo.  Previous trip have been with my daughters, so even more reason to be aware and safe.  Always stop in well lit places with people around.  Be aware on what is around you, who is noticing you, and who/what looks out of place.  If possible get gas on your credit card or cash, and pay inside.  Protect your credit/money/identity because you have to come off vacation some time.  You don't want to get half way to your destination and find out Olga in the Ukraine has drained your account buying cotton candy off the Internet.

3. Have fun.  I've made this trip so many times that I find new things to entertain myself.  I'm a huge car karaoke singer.  I'm usually nearly horse by the time I get to my destination.  I also find myself seeing how many rocks and clouds look like peni (or is it penises?)  There are a LOT of penis rocks in the East Texas desert.

4. Hydrate and moisturize.  This goes along with the eating healthy and the one I always have trouble keeping up with.  My diet coke is my addiction.  Water is often an afterthought, but it is very important to stay hydrated.  Moisturizing, especially when you have skin conditions like psoriasis, is equally important.  Another forgettable thing while I'm belting out Kelly Clarkson, but if I don't my skin is a cracked, bleeding mess.  The skin is the largest organ of the body, and 20+ hours in the ac of the car makes that organ scream for relief.

There you have my tips for a enjoyable road trip with chronic illness.  The road is a great because it's so adaptable.  Bring a friend who sings just as badly as you do (not possible in my case) and have a blast!

Wednesday, September 5, 2012

Feels SO Good.

I know I've been absent for about a week.  I decided to take a road trip to Phoenix.  I am SO glad I did.  Firstly I am getting to visit with my family which I miss dearly living 1000 miles away from them.  Secondly for a joint vacation.  No I don't mean a weed for my friends who like to turn everything into double innuendo.  I mean my joint pain.  Yes I still have pain, but it's literally like turning back the clock 5 years.   I was even tempted to find a place to go dancing just because I think I actually could get away with it.  It never ceases to amaze me the difference the desert climate makes for me.  Even with it being "monsoon" season I feel GREAT in comparison to my normal comfort level.

I really don't think Simponi is doing much for me yet, but it could have something to do with it too.  I will have to wait till I venture back east to find out for sure.  The fact that the pain gradually decreases as I get closer and closer to El Paso on my trip leads me to believe it's not Simponi, but climatic change that is the improvement.  My skin is worse if anything so it's definitely not doing anything for my psoriasis.  I am not having any really bad side effects still either so I will probably give it till December to show some improvement before totally discounting it.

Simponi really isn't the reason I'm blogging today so enough of that.  I am having a great vacation spending time with my family and otherwise doing pretty much nothing.  I feel rested for the first time in months.  Again I say, it's AMAZING!  My mid term goal in life is to move here, hopefully before my arthritis advances to the point that the climate won't make a difference.  The reduction in swelling makes a big difference in the degrading of the joints so getting here for my health is looking like it may become a shorter term goal than I originally planned.  I know my family would be thrilled to have me closer as I am the last one not to migrate to the desert in my immediate family (my kids not included).  Even when I was younger and living at home I don't remember us being as close as we are today as a family.  I miss them being physically in my life on a regular basis.

So here's to the desert and all it's charms.  Even with 100+ temps it's where I want to be very soon.  The only thing I could do with out is the ginormous spider that came out to say hi.  So to close I'll leave you with him.  I'm pretty sure the only thing that will kill him is fire.. Lots and lots of fire....

PS I miss you vaginas!!  I'll see you next week!

Saturday, September 1, 2012

Greetings from Phoenix.

I thought I'd escape the killer amebas for a week by visiting my family. Obviously I was mistaken. They've followed me here. Ack!!!

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.