Be careful what you wish for...

Last night as I was self medicating (translate to drinking heavily) because I am out of meds and don't have a Dr appointment until Thursday, it dawned on me that I now weigh what I did when I graduated from high school.  Through aging, having children, Remicade induced weight gain and such I have often wished I weighed what I did when I was in high school.  Some days I stand looking at myself after I bathe.  My body has the scars of a life lived and a body ravished by psoriasis.  The large dark psoriasis scars that probably I am the only one who really notices, the stretch marks (which I love because I remember which ones are from which daughter), the scales of psoriasis that come and go and come back again, and the scars from injuries both from stupidity and accidents all remind me to be careful what I wish for.  Yes I have the weight of my youth, but my body has definitely born the brunt of living and my disease.

The weight loss was not something I tried to do, it is a side effect of medication and illness.  I know that it is better for my arthritic weight bearing joints to not have that 50 lbs I've lost hammering them with every step, but I have to wonder if the weight loss "plan" I've been on is worth the weight loss.

As I sat pondering all this it also dawned on me my other biggest wish this past year.  To live with less pain and less extreme flares.  To move to AZ where I knew that was possible.  It has been possible for me and I feel very blessed and physically relieved to feel "better".  Better of course is a hard word to quantify, but I'm out of bed more than I am in bed.  This decision for my health also came with costs.  I am so happy to be near my parents, sister, and my sister's family, but I miss my best friend and daughter to the depths of my soul.  My heart is split in 2 and residing in 2 places.  After being here near my family I don't think I could leave again yet I don't feel like I'm functioning well with the other half of my heart 1000 miles away.  No amount of seeing my family or my new friends is quenching my loneliness.  I carry regret that after waiting and wishing for 14 years to have my child back and finally having her in my life and building a strong relationship with her that I am so far away.  My communication with both my daughters and morning phone calls with my best friend are what keep that wisp of a thread from snapping and hold me together emotionally, but I have to wonder when that thread will snap.  When crying in my tub won't be enough of an emotional release to keep me from totally breaking down.  I know that many will see this and dismiss it as life change induced depression, but I'm not depressed.  I also know some will say that with time things will work out and level out, but I just don't see that happening.  I've lived a gypsy life all my adult life and leaving an old place was just part of the journey.  I didn't forget my old place, but I didn't mourn it or dwell on it.  I remembered the good and looked forward to the next step of my journey.  I'm not leveling out.

Everything we wish for is sent out into the universe, and it may never come true.  Just keep in mind that it might and really be sure it is what you want because it may come with a price tag that is hard to swallow.  I don't know what the answer is to my response to the universe's answer to my wishes.  I will figure it out, but in the meantime I'll keep on keeping on just like I always have.

A year in my life...

September 24th, 2012 is an important day in the progression of my decline this past year.  I had my annual physical that day.  I was advised to get the TDAP vaccine, and after discussion between my GP and my Rheum it was decided it "should be ok".  Well hind sight is 20/20 so to speak because it was definitely the catalyst that sent my already flared condition into hyper-drive.  I was already only working about half time and had discussed taking some time off work to try to allow my body to equalize and try new meds, but I was holding out.  I wasn't ready to accept that I needed to slow down.  It's funny how we think we have a choice in these things sometimes.  My life came to a screeching halt on that day.

I never returned to work.  I still held out hope that one of the meds would stop the attack of my immune system, but nothing worked.  A few actually made me even worse (and I didn't believe that to be possible when I started).  I didn't apply for Social Security Disability until January because I hoped I would still be able to return to work.  That is something that will never be a reality for me the rest of my life.

This past year has taught me so much about myself and life.  Not only have I retired, but I have relocated to Arizona in hopes it would improve my health and to be close to my family.   I have learned to appreciate the small things in life.  I have learned to listen to what my body is telling me and be thankful that I can live at the pace my body sets for me (even if my head and soul are resistant to taking it slow).  I have learned that holding anger over what I have lost or had to give up is not healthy or productive.  I have learned that quality in everything I can control in my life far outweighs quantity.

These days I live a very different life than I ever imagined I would be living.  I wake up at 6 every morning still, but instead of fearing that I won't be able to get out of bed for work and lose my job, I get up when I can, I enjoy my cup of coffee on my patio.  I cherish my morning talk with my best friend.  I take time to cuddle with my cat.  On my good days I go for a walk or a swim, and craft.  On bad days I accept that it's ok to stay in bed or on the couch and allow my body to rest.  The housework will get done eventually. It's ok to eat frozen lasagna or a peanut butter and jelly sandwich some days.  It's ok to be a hermit some days.  Life continues to move forward with or without us.  We have to choose to live it the best way we can or we aren't really living at all.

I still have moments when I grieve my old life, but I don't have the rage I carried a lot of the last year about it. Life is to precious to squander it being consumed with rage and self pity.

So I guess today on the anniversary of my life taking a nose dive I want you all to know that it can be ok.  It may be different, but it isn't the end of life.  Listen to your body and find your joy.  If it's a day above ground you are one day closer to a cure or at least the hope of one being a reality.  None of us are alone in this walk and I want all of you to remember that.  In our darkest hour there is always someone out here who understands and gets it.  ALWAYS remember that.

On a final side note I want to let you all know that I read today that Stelara has been approved for Psoriatic Arthritis.  This is my next hope for relief as I have exhausted all the other options.  Hopefully it will be hope for many of us who have failed the other options.

Peace and healing to all of you!

Cuddle time with the cat (she looks thrilled).

Be sure what you are willing to pay for...

I know I have said I would be doing a blog on another medication, but I've been in and out of flares so much lately I've felt like I'm riding a roller coaster in a tornado.

Being in a new place and meeting new people I have tried very hard to be up front and honest about my disease and explaining what that means when it comes to committing to events or invitations.  I am very realistic that no matter how I explain it, people who do not live it can not truly understand it.  I guess that brings me to the reason for today's blog.

One thing I have tried to use as an explanation is that everything you do has a cost associated to it.  It's a concept most people can relate to on a basic level.  You want to go out drinking all night, you are going to pay for it both in your physical condition in the morning.  You do a quick touch football game with the buddies after years of not throwing a ball, your arms are going to feel it in the morning.  When you have a disease that has chronic pain and fatigue those decision making tasks of what you do you will pay for comes with every action.  It's constantly in the back of your mind on good days and bad.  On bad days you look at the shower and wonder if you will have enough energy to brush your hair or actually put clothes on after.  On good days you wonder how much and for how long you will pay for that house cleaning or trip to the mall for some retail therapy with your daughters.  Even intimate time with your partner is a cost comparison.  Along with all these decisions going on in your head you deal with the guilt that most days the answer is you just don't have the chips to pay for these activities in advance and you dread the pain and exhaustion you will pay for it after the fact.  Or as many in the chronic illness community say "you just don't have enough spoons".

Most of us will chose life moments any chance we have knowing the cost that will be paid if we can.  It is just very hard for those in our lives to understand that that 2 hours of expending energy doesn't equal 2 hours of not feeling so hot.  It can cost us many more hours or even days of recovery to return to our version of "functional".  Just the stress of making decisions over many events or the strife of misunderstanding can trigger a flare.  How can you explain that fun little complication and not expect people to feel like they are walking on eggshells around you constantly.  It's such a muddy, messy, convoluted cycle of crap.

I don't know if this blog has a purpose beyond my own venting.  I'm sick and tired of being sick and tired and not getting treatment because of bureaucratic crap.  So this is my vent for the day...I'm sure there will be a price to pay for it ;)

Even in the desert when it rains it pours

We are full swing into Monsoon season here in Arizona.  My Psoriatic Arthritis and Psoriasis have been MUCH improved since moving here, but yesterday I was reminded of just how bad my body can be.  Yesterday was a very, very bad day.  Luckily I had a comfy couch, a book, the TV and a fat cat to keep me occupied.  Also I am very lucky to have awesome family to help me out.  My niece came by for several hours to keep me company and pretty up my fingernails for me.  On top of that I had a wonderful man come by and help me get us fed.  Being my normal bull headed self I insisted on cooking for us, but he did the chopping and cutting and any heavy lifting.  All I had to do was direct.  It was a welcome and pleasant change.

I am starting to realize the differences here as to how my body reacts to weather.  I am still very sensitive to barometric changes, but here in the desert the changes can hit so fast and so hard that a body doesn't have time to stew.  In Dallas I could feel the build up of a storm for days.  When it would finally rain it was like a pressure valve was released in my body and it would feel like my whole body would finally be able to exhale.  Here I have an achiness when we have storm systems around us, but it's such a dramatic change it isn't the build up like in Dallas.  With all the sudden storm attacks of the last week and some emotional stress my body decided yesterday enough was enough and everything was flared.  It was the worst day I've had since I've been here and comparable to my many bad days in Dallas, but this morning I am feeling MUCH better.

As much as I hate bad days I know it's a reality for me.  I also will gladly exchange 1 really bad day for months of bad days.  I've been here for just over 2 months and in that 2 months I've had 2 days I was home bound.  It's a pretty amazing improvement no matter how you look at it to weeks of being home/bed bound in Dallas.

I am working on the next medication blog.  I have decided to do it on Enbrel.  If you have any specific questions you'd like researched about Enbrel please add a comment and I will add it to my list of points to look up.

May you all have many blessings and joys in your day!

Riding the rollercoaster.

Today was a good day.  I felt good, I met some of my neighbors and enjoyed their company, and spent some time with a friend.  Then I was alone.  I like being alone a lot of the time, but sometimes it just gives me time to stroll through the deep valleys of my mind.  Tonight is one of those nights.  I thought about the roller coaster my life has been.  I wouldn't change a thing.  Now that doesn't mean I don't regret some choices, but it does mean that I appreciate where those choices have lead me and what they have made me.

As I sat in the tub I thought about the last 2 years especially.  A little over 2 years ago I quit taking Remicade.  I was not getting benefit from it anymore and had started the oh so obvious decline that can be Psoriatic Arthritis, but my skin was still clear, I still had energy, I still felt able to be productive at work, I still made commitments with friends, and I started a relationship with a wonderful man.  He doesn't read this blog, but I still feel he deserves to be acknowledged as the one person who was there through the worst of my last two years.  He stuck by me as my skin turned into scales that cracked and bled, through days when I couldn't walk or get out of bed, he believed in me and that I was beautiful even when I didn't.  Then came a time when I had to leave.  Even though he never left me, I had to leave him.  We both had to do the best thing for our own lives and that meant not being with each other.  For the rest of my life I will respect and love him for being my strength when I had none.

So now here I am.  I am blessed to have my family close by, but I realized today that these people are meeting the "new" me.  The me who has days when I can't leave the house.  The me who doesn't work because I am sick.  The me who isn't real sure who me is sometimes.  The me who has learned to make the best of what I can, and lives life with quality because quantity isn't an option.  They will never know the me who would dance till the sun came up, climbed cliffs, ran 10k's, created detailed jewelry, the me who excelled in a career and the me who didn't accept limits or rules because there was always more I could accomplish.  I wonder if they will accept the me I have become.

I realize that with what my disease has created for me I do have some blessings.  I have the time to see the beauty around me, to truly enjoy the things I can do when I can do them.  I can write and create again.  Maybe I can even love again.  It still reminds me every day of the things I can't do though.  The things I can't give my children, the things I have to watch from the sidelines.  It's a hard pill to swallow some days.

I guess I need to resign myself to riding the rollercoaster.  I always loved the thrill of the ride.  It's just a little different view now and I will find a way to see the beauty of that point of view.  It's just going to take some time.

So tonight is dedicated to the rollercoaster of life.  May we all find a way to enjoy the ride.  The view from the top is phenomenal!

Welp these creams don't work... Let's switch to a chemo drug! All about Methotrexate.

This will be the first of my focus on medications series.  I picked Methotrexate because it is usually the first in line for the heavy hitters of meds when you have unresponsive/ moderate to severe Psoriasis and or Psoriatic Arthritis.  

For those not in the know yet Methotrexate is often referred to as MTX.  It is considered a Disease Modifying Antirheumatic Drug (DMARD).  It is also used in higher doses to treat cancer.  Many times starting you on MTX is a means to an end as most insurance companies require you to fail on at least one (and sometimes specifically MTX) before you can start on a biological therapy.

So on to the nuts and bolts.  MTX is available in pill and shot form.  It is usually taken 1 time per week for Psoriasis and Psoriatic Arthritis.  It was approved for use for Psoriasis patients in the 1970's.

What MTX does:  MTX slows the development of psoriasis by suppressing the part of the immune system that is causing the increased development of skin cells.  It does this by binding to and inhibiting the enzyme responsible for excess skin production.  Recent studies are finding that MTX does NOT have significant effect on Psoriatic Arthritis as it does on Rheumatoid Arthritis,  however it is still a prerequisite for many other meds which do help Psoriatic Arthritis, and it does show improvement in Psoriasis.  It does act as an immuno suppressant so may slow the progression of Psoriatic Arthritis even if it is not giving relief as many other DMARDs and Biological medications do.

Potential Side effects: Commonly known side effects of MTX are nausea, headaches, hair loss, mouth ulcers, and fatigue.  It is also known to be very stressful on the liver and long term use is known to cause liver toxicity.
The copy and paste version of side effects are...

• dry cough, shortness of breath;
• diarrhea, vomiting, white patches or sores inside your mouth or on your lips;
• blood in your urine or stools;
• swelling, rapid weight gain, little or no urinating;
• seizure (convulsions);
• fever, chills, body aches, flu symptoms;
• pale skin, easy bruising, unusual bleeding, weakness, feeling light-headed or short of breath;
• nausea, upper stomach pain, itching, loss of appetite, dark urine, clay-colored stools, jaundice (yellowing of the skin or eyes); or
• severe skin reaction -- fever, sore throat, swelling in your face or tongue, burning in your eyes, skin pain, followed by a red or purple skin rash that spreads (especially in the face or upper body) and causes blistering and peeling.

Common side effects may include:

• vomiting, upset stomach;
• headache, dizziness, tired feeling; or
• blurred vision.

You will need to have liver function tests done regularly (usually quarterly) to make sure that MTX is not over taxing your liver.

Ways to minimize side effects:  Because many people do experience varied level of side effects while taking MTX it is a common point of interest on community boards about Psoriasis and Psoriatic Arthritis.  Many people find that just switching from the pill form to the shot form of MTX brings a lot of relief.  The time that you take your MTX can make a difference too.  Taking your medication before bed so that you sleep through the worst of the stomach upset can help.  Most physicians will prescribe folic acid with MTX to help combat side effects.  Folic Acid is generally taken daily EXCEPT for the day you take your MTX.  Other things that help with nausea are ginger products (ginger snaps, ginger tea, sugared ginger), hotpad on the stomach area, anti nausea medications, the BRAT diet (Bananas, Rice, Applesauce, Toast)

My personal experiences with MTX:
I have been on MTX 3 times over the last 10 years.  The first time was solely for Psoriasis.  I was on the pills and did experience some nausea, but taking them at night was enough help for me to not be in too much discomfort.  I took solely MTX for about 6 months and it worked well on my Psoriasis.  During this time I was diagnosed with Psoriatic Arthritis and it was decided to put me on Enbrel and drop the MTX.  The second time I was on it I was on Remicade and it was added to try to increase the effectiveness of the Remicade and prolong the amount of time that I could stay on Remicade as I was at max dose max/frequency of Remicade.  This time I started with the pills and experienced severe nausea and headaches.  I was switched to the shot form and again taking it at night and the nausea reduced and I no longer had migraine level headaches.  After about a year the combo of Remicade and MTX was causing my liver function tests to come back high so it was decided to stop the MTX.  The final time was after I quit Remicade.  My Psoriatic Arthritis was no longer responding to Remicade so it was decided to try MTX alone for a while since I had responded well to it before.  This time I started with the shot form.  I had severe nausea, vomiting, hair loss in large clumps, severe headaches, and very high liver enzyme tests.  I was only able to tolerate it for about 2 weeks before the doctor took me off of it.

So there you have the good bad and ugly of Methotrexate.  I know it can be a scary option, but many people do respond very well to it on it's own for many years.  None of the advanced meds are an easy choice to choose so if you are at the point in your disease that DMARDs and Biological options are being discussed this is an option.

Please remember I am not a medical professional.  Discuss all your treatment options with your specialist and do your own research.  Be your own best advocate!  Be proactive and be educated.

Web Resources:
1. http://www.psoriasis.org/about-psoriasis/treatments/systemics/methotrexate

2. http://www.medpagetoday.com/Rheumatology/Arthritis/33895

3. http://www.drugs.com/sfx/methotrexate-side-effects.html

4. http://www.webmd.com/digestive-disorders/brat-diet

Happy July!

Welp it got here quickly, but I committed to start up the blog again in July so here I am!  Happy Canada day to our  Canuck friends.

To catch everyone up, I recently moved to AZ.  LOVING the dry heat.  Yes when it hits up near 120 it's ridiculously hot, but that's what AC is for :)  I've been having a flare the last few days, but it's been too hot to be up and about so camping out on the couch with the TV is just fine.  Maybe tomorrow I'll feel up to a dip in the pool.

As for my Psoriasis it looks about as good as it did while I was on Remicade.  Between Arava and my daily time in the sun my skin is happy.  I had a small flare start up last week which was expected after the stress of a move, but it got under control very quickly.  Overall my Psoriatic Arthritis on my worst days have been better than my best days in Dallas.  We are in Monsoon season here, and yesterday there were storms all around the valley and we had a small (according to the locals) dust storm come through so I had a pretty typical rain pain flare.  It's the first one in a month and I'll take it compared to several a week I was suffering through in TX.

So here we are in July and let the fun begin!  I had a few suggestions on the Facebook page for topics to cover, and welcome any here or there.

Finally a heartfelt sorrow and prayers for the people of Prescott, AZ who lost 19 brave souls yesterday.  May the families of the firefighters lost find peace and comfort in the days, weeks, months and years ahead.  Thank you to these amazing men who gave their lives to try to save both the lives and properties of their neighbors of the city of Yarnell.  May we have rain in the area soon to help the continued fight of this blaze that has devastated 2000+ acres and the lives of hundreds.