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.

2 weeks to Phoenix

I know I've been very delinquent in posting.  Besides the disability, LTD, VA drama that you all know about I am preparing to move.  I also have my youngest turning 18 and preparing to move out on her own.  On May 24th I will be hitting the road to PHX.  I am really excited and ready.  I truly hope that once I get there and find myself a home I will be able to focus on this blog more.  I have a lot of things I'd like to discuss, in fact I have a list of topics that I need to research and want to talk about. I do apologize for my lack of presence and want you all to know that I am not just not thinking about the blog.  Life is just a bit overwhelming right now.  I will be back and I will be more active.  I am making it a commitment.

I wish you all healing and joy.  Here's to my life moving forward in a few weeks!  If you have any topics you'd like me to talk about feel free to leave comments.  I'm not shy or short on words as anyone who has read the blog knows so don't be shy!

Beware of the "good day".

Anyone who has a chronic debilitating disease can attest to the rarity of a good day.  A good day is one of those days that your pain levels are better than usual, your mobility is up, your mood is up, and or you get an opportunity to do something your body has kept you from doing for a very long time.

Today was a good day for me.  It's been at least weeks since I've had a good day so I was excited when I woke up with very little stiffness and pain.  Then after getting my cup of coffee I realized the pain still wasn't appearing, and all my limbs and digits were working pretty well.  If I felt like this every day or even most days I would be working still.

Now here's where caution comes into play.  It is very easy to say "WOOHOO! Lets go mountain climbing and paint the house!" You know you will pay for it tomorrow if you do these things at a best case, and probably half way through your house painting your body will remind you that you have no control.  Most times though I keep in mind that whatever I do that is above and beyond I will pay for usually sooner rather than later.

Today I managed to keep myself in check.  I took myself out for lunch at my favorite Cheesesteak joint and got my car oil changed.  Once that was done I enjoyed a nice nap with an unusually full belly and had some of the best sleep I've had in as long as I can remember.  Yes I realize that this does not sound like much of a day to most people, but my days usually involve either staying in bed or being on the couch and maybe packing a box of stuff to prep for my move and at least a few naps.  It's gotten to the point that cooking or even making a sandwich is a challenge most days so this day was getting me off the couch, out of the house AND I got the best Philly in town.  SCORE!  I'm sure my car appreciates the new oil too.  She was way overdue with all the traveling I did over the holidays.

I'm still feeling pretty good, but my hands are starting to swell up and my knees are catching.  I am fairly sure my good day won't make a repeat visit tomorrow.  I'm ok with that though.  I've learned to enjoy them when I have them.  It's not worth dwelling on what I used to be on normal or bad days.  Just make the most of every day good or bad.

The moral of the story though is to be ready to pay for what you are going to do.  Sometimes a good day is just a day to be happy and enjoy.  You don't have to conquer the world.

One last thing before I go, I had my Social Security Disability physical last week.  Haven't heard back from them yet, but I feel it went well so keep your fingers crossed I will have approval soon.  I'll blog about the whole Social Security Disability process one of these days, but I'd rather get through it all so I have some feeling of knowing what the heck I'm talking about.

Back to the waiting game.

Hi all!  I have been delinquent yet again in blogging.  I'm not going to make excuses, but I will apologize.  I am sorry for not being more regular with the blogs.

Went to the VA yesterday for yet another follow up.  I'm considering just getting a cot and living there.  Firstly I want to give HUGE cudos to the Pain Management clinic.  They really should have never seen me as I was already in a maintenance plan, but my PCP sent me over there anyway.  The VA does not carry Butrans which is the synthetic Morphine patch I had been on since November so we had to do some trial and error.  They started me on the lowest dose, and it did nothing.  After several days in bed hoping that it would build up in my system and kick in I finally gave in and gave them a call.  The decision was made to up my dosage, but since driving the hour to the VA to pick up the script they not only sent me a new dose, but overnighted it to me.  The med/dose I am on now (Fentnyl) is not as good as the Butrans was, but it is what I will call and acceptable level of ok.  The Docs and support personnel at the Pain Clinic renewed my faith in the VA.  I still don't trust it on a whole, but they gave me some of the best care and were some of the most compassionate care providers I have ever been to.  Thank you!

I  headed on over to Dermatology after finishing with the Pain Management Clinic and they had canceled my appointment.  I should have known that was not a good sign about getting on Stelara, but the receptionist squeezed me in anyway. (Another great VA employee!)  Apparently the Biological Board has not met and won't be meeting for at least 2 more weeks.  The Derm resident was honest with me, and I appreciate that honesty.  She said "Don't hold you breath".  Her less than optimistic view was not about getting Stelara some day, but about getting it in time to get the initial loading doses before I was moving.  I guess that next treatment of hope will have to wait till I can get vetted and into the system at the Phoenix VA.  While driving home I realized that was probably a good thing.  I have been so desperate for some kind of hope for relief that I hadn't considered the possibility of adverse reactions.  If I had very bad side effects it could very well stop my move to Phoenix if not worse.  Better to wait.  Everything happens for a reason.

So there you have it.  I am back in a holding pattern.  This week is my last week of Short Term Disability and I am on another holding pattern for getting approved for Long Term Disability.  Hopefully that will resolve itself very soon.  My rent isn't going to pay itself.  I also have my Social Security medical exam next Friday.  Things are moving at their own sweet time, but they are moving.

Happy Good Friday and may you all have a beautiful and blessed Easter!!