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!!!