Move it, move it!

I've made it to the gym twice since my last post :) 
Getting started is always hard after a long break, but it definitely feels good to be back.  I have not really felt much pain and I know that's because I'm not really able to do a lot right now.  However, I am managing to keep moving and doing a mix of strength/cardio for at least 45 mins each time.  The first day I did two miles on the bike as a warm-up. That was a surprise because I can usually only do five mins before I get worn out.  Today I wasn't able to do as much biking because I'm having trouble with my right foot.  It just doesn't like to sit the way it has to for the pedals on the bike...so it causes quite a bit of pain on the top of my foot.  Still, I pressed on and moved to other things.

Planet Fitness has a room that includes a 30-minute circuit workout, very similar to what you might find at Curves.  So I worked on that for a bit today. It was a little confusing because the machines are weight based, verses the hydraulic resistance used at Curves .  This actually makes it so that my workout is beyond 30 minutes because I must spend time adjusting each machine to the right sitting level, then making sure it is on the right weight. By the time I was finished with that part, the 60 seconds I was supposed to be working out are gone.  Of course it will get easier to adjust the machines in time, but I still think it will still add about 10 minutes to the workout if you include taking time to also wipe down each machine after use. 

For these last two visits , I have just done some basic stuff to get back in the habit of actually being at a gym.  Hubby and I have an appointment for Monday morning to meet with a trainer to have a workout plan designed for us.  I am excited to see what she has in store, and scared at the same time!

So...you've been reading all about my plans for this year, be sure to leave a comment and tell me about your new year/new you fitness plan!

Figuring Me Out

In my previous post, I made a resolution: to lose weight by exercising with only the videos/games I have at home for my Wii and Xbox Kinect systems.  Unfortunately, I have discovered that , through no fault of the videos, I lack the will power needed to maintain the regimen I need to pursue such an endeavor.  KUDOS to any of you that do have it !  Will power is a huge thing for me--if it were not, I would not be in this drastic situation where I need to lose 100+ lbs just to be healthy!

So...please never think of me as a quitter! That is NOT what I am, nor what I am doing.  I will continue to use my games to enhance my other activities, and besides, some of them, like Zumba are just downright fun. :)

In the end, however, my husband offered me a late Christmas present---a gym membership! I know, I know, I said that we couldn't afford it.  I made a mistake.  It completely slipped my mind that a brand new gym just recently opened here.  Planet Fitness is a Biggest Loser partner.  They have a "judgement free" policy that allows anyone of any shape, size, or fitness level to come workout with out fear of being judged by others.  They also offered unlimited fitness training and a plan that anyone can afford: only $10 per month ! 

How sad is it that many obese people will not go to a gym because they are so afraid of the opinions of others who are there watching them?  What's worse is the people who are watching them!!  They should not be forming negative opinions, but should instead be encouraging and motivating them to keep coming back to that gym!  What's better for a person who's 100+ lbs overweight--to be hitting the gym everyday and burning calories, or to be sitting at home in total fear that some skinny person at the gym will laugh at them and make them feel more worthless than they already do? I pray that none of my friends would be that mean-spirited.

I would just like to say that I am sorry I will be unable to do my initial program idea, but I will still continue to blog about my progress and how it affects my arthritis as I take the weight off for good.  I hope you will be faithful to walk by me and offer that encouragement and motivation, because I really need it.  I am not a quitter, I just have to find what works for me.

Love,
Carla

No gym, No problem!

Alright, yesterday I promised you big changes were coming.  I am here today to keep that promise! 

2014 is going to be a FANTASTIC year! 

Here is where we get started:  I am coming into this year at the heaviest weight I have ever been. Yes, that is hard to admit, but it must be acknowledged in order for change to take place.  What is my plan for that change?  I can't afford a gym membership right now that let's me work out how I need to, so I have to find other ways of getting exercise.  It is winter, and in Virginia, that means lots of cold, rainy days, and sometimes lots of snow.  All of that is preventative of getting outside to enjoy a walk or playtime with my 5 year old.  So I decided to do something totally WILD---I'm going to actually use all of the Xbox Kinect™  and Nintendo Wii "games" my husband has given me!!! 

You heard me right, I'm going to lose weight by using my Kinect™ and Wii !  

We have many videos for our consoles that are designed to help people get fit, from The Biggest Loser Challenge (Wii) to the Fit and Active workout on the Kinect.™.  Why not make my workouts both calorie burning, AND fun?  I can play sports, or even dance my way to fitness.  No gym, No problem!  I totally have this :)  

I know many of you are asking yourselves, "If she has all these videos and hasn't used them before, what makes her think she can get fit with them now?"  The answer is simple.  I have a purpose.  I want to reclaim my life.  I want to be healthy for myself, my family, and my friends.  I have finally awoken to the reality of what my weight is doing to my body, and how my life is limited because of it.  I have goals and dreams that are not being accomplished, and that ends NOW!  2014 is the year I have decided to take it all back.  

I have also decided to share this amazing journey with you--my very best friends and loved ones.  I will be blogging my results along the way, sharing with you my workout routines, successes and failures (of course there will be some, but we must learn how to use them to move forward and not allow them to drag us down permanently).  If my story inspires you, motivates you, or even if you just want to drop a line of encouragement, I would LOVE to hear from you !

That being said, I would like to introduce you to my first workout today ! 

I started the adventure with a fun but short Zumba class

It will take a while to build up time!

Day 1

After Zumba, I played some Racquet sports with hubby, we played 

 Squash and Tennis .

In total today I spent ONE FULL HOUR exercising and moving about, not bad for a gal who normally spends 3/4 of her time sitting on the couch with crochet hook in hand ;) Now let's see how I do tomorrow!

Thank You!

I want to say a huge THANK YOU to my loyal readers ! It has been a year and a half since I last update this page, but I see that many of you have continued to check back for new posts.  As you all know, my life has the craziest ups and downs.  This past year has been no exception.  We moved from VA to MD in Jan., and then back to VA in April, where we ended up staying with hubby's parents for a month and a half before finally moving into our own place.  I was unable to visit doctors during this hiatus, and of course ran out of meds again. 

Long story short--Things are settling down somewhat and it's time to start another new year.  I have a very exciting plan in store, and I hope that you will join me and this amazing adventure!  I will be blogging the whole way through :)

Get ready for some PsoriMom amazingness in 2014 !!!

Springtime fun

Spring officially arrived a little over a month ago.  For many psoriasis and psoriatic arthritis patients, however, the cold morning/warm daytime/cold nighttime routine is a painstaking journey to endure on the way to the days of constant summer warmth.  Many arthritis sufferers welcome the summer because the heat of the sun seeps into our joints and gives us those all-natural shots of Vitamin D. that we need  so bad.  Another huge benefit is the extra surge of energy that comes when the D starts to work and help ease some of that nasty winter pain.

So what is going on in my world this spring?  I am really amazed at the amount of energy I manage to find in my days lately.  It's a really good thing I started that exercise regimen earlier this year, because I seem to be on the go a lot these days.  Between preschool and church activities, both of my writers groups, and whatever else life throws at us, it seems like there is barely ever a moment to just sit down and relax. 

A while back I was having some trouble with my knees bothering me frequently, so my doctor put me on 50,000 I.U. of Vit. D. per week.  I was pretty shocked at the high numbers, but she assured me that it wasn't too high, especially since my levels had tested on the low end of the scale.  I was amazed after a couple of weeks that I felt better.  By the time I went back for my 3 month checkup, I couldn't even remember how long it had been since my knees stopped hurting!  This has been a huge help and energy boost.  I am currently down to a max of 35,000 I.U. per  week, with an appointment scheduled for next Wednesday (5/9) to see where my levels are at now.

Also got new X-rays done today.  The X-rays are updates to compare with the ones we took last year so that we can see how fast or slow my arthritis is progressing, and what damage has been done to my joints over the past 12 months.  I have noticed some changes in the second toe on my right foot, as well as the index finger on my right hand.  My toe is completely out of "whack" , for lack of a better explanation.  It isn't broken, or dislocated, but it is very out of place.  Tomorrow I will try and post a pic to give you a better idea of what I'm talking about, but basically my second toe seems to be growing sideways towards my third toe instead of straight.  The problem with my index finger is that I have what feels like a large amount of bone deterioration in the upper joint.  If you feel of the finger, the best description would be that it feels like a huge indentation in the bone.  I'm hoping the X-rays will give us some insight into what is going on with that. 

In other news, I have taken on a new volunteer venture with Abbott, the company who makes my Humira medication.  I have joined their SPEAK Network, where I will be able to share my psoriasis story/journey with others in need of education, support, or research information.  I look forward to working with them to help spread psoriasis awareness, and hope that one day we will find a cure! 

Feeling well

Often times when my psoriatic arthritis is doing well, I tend to get busy and forget to come here and make posts for you to read.  I wanted to make sure that I get in the habit of doing this, because it is important to let you know that, while every day is not peaches and cream, not every day is filled with massive amounts of pain and tears either.  There are  good days and bad days.  It is always best, though, when the good days outnumber the bad. 

I spent another lovely time at the park today.  This time everyone went, including Dad! I love going out in the sun when I can.  Right now my joints do not hurt and I have used enough energy to head off to bed at least 3 hours ahead of my normal schedule.  Hopefully it will be a restful sleep.

Good night all!

Sunshine

Do you enjoy being out in the sunshine?  When I was first diagnosed with psoriasis, I was actually told that part of my prescription was to go outside and spend half an hour in the sun, EVERY DAY! I thought she was a little bit nutty.  To top it off, she wanted me to do this every day at high noon!   At the time, she couldn't, or at least didn't, explain why it worked, she just said that it was often very helpful.  I knew that from personal experience.   Since then, many studies have been done that indicate how well vitamin D works to help clear psoriasis outbreaks.  There are even topical prescription ointments that contain it.  For many people it works wonders. One of the best ways to get it, is to have it naturally produced by your body, and this means spending time out in the sun. 

Sunshine, like all things, must be taken in moderation.  I am not a good example of this.  I had "the most scathingly brilliant idea" (Haley Mills as Mary Clancy in "The Trouble with Angels") today, that I would take my son to the park. It was a nice, beautiful and sunny day, he had a good morning at preschool and it seemed like a great idea.  Dad opted not to join us since he hasn't been feeling well the past few days, so we called up our playtime buddy, Great Aunt Kathy (Dad's aunt).  Even though she is almost 60 years old,  she always enjoys spending time with my little guy, and often has way more energy than I do! 

We enjoyed a quick lunch at home and then headed off to the park.  The sun was beautiful, but a bit hot if you sat too long in one place.  We played in the dirt, I took some lovely photos of him playing,  and then we moved over to the "sandbox".  It's really not a box, just a sand-filled area near a small stream.  Anyway, he enjoys playing in the sand with his beach tools, and he was having so much fun that Mom decided she wanted to make him  REALLY smile.  I handed my glasses to Aunt Kathy, filled up his bucket with sand, then handed it to him with the explicit instructions that "you can only do this when Mom says it's okay"...and then I allowed my 3.5 year old son to pour his entire bucket of sand on my head!  I was sitting on the ground,  he was standing, so I was just as his level.  I really wish we had gotten photos of this, as I do not think I have ever seen any bigger shock on a little boy's face than when his Mom says it is okay to pour sand on her, nor any brighter of a smile when he sees her completely covered with the stuff. :)  I also wish I could have gotten a photo of the surprise on Aunt Kathy's face! That was definitely the last thing she expected me to do. 

You may be asking yourself at this point, why on Earth I've bothered to tell you about my day at the park.  Well, if you remember, we started out talking about sunshine and vitamin D.  This is how I choose to get mine!  Being out in the sun has always been a good thing for me.  It helps to clear up my psoriasis, and gives me a nice tan to boot.  But, like I said before, it must be done in moderation.  There is always the immediate risk of burning, and of course, the long-term risks of skin cancer.  The main point of this post however, was to show you that it's okay to go out and enjoy life instead of sitting home and worrying about your psoriasis or what people think of it.  Most importantly, don't forget to take time to enjoy the moments that are too few and fleeting :)

Working it out

     As of today, I have lost a total of 10 lbs.  I began my new journey at the highest weight I have ever been, and I vowed that I would change those extremely scary numbers.  I am doing well so far!  What I feel proudest of is the fact that I am doing it all the "hard" way.  There are no pills, no meal replacements, no starvation, no silliness whatsoever.  There is  plain old hard work and nutrition knowledge.  I have progressed from knowing what healthy choices to make to actually making those choices!  I find myself refusing calorie-laden dishes in favor of veggie filled ones, and diet (which I used to vehemently detest) soda if I absolutely must have one at all, but I prefer water or plain tea.  This is BIG! I have known for a long time which choices I should be making, but I just never had the willpower to force myself to do it.  I would say things like "oh, I know I should have the roast chicken with mixed veggies, but I've been good all day, so I think I'm going to have the alfredo instead, it won't be so bad".   When you say that every single day, there's no evidence left to prove that you ever did anything right.  All of those "not so bad" choices add up to a great big pile of "yeah, that was a huge mistake", when you step on the scale.
      Another thing that I have learned to do, is to take baby steps.  I do my workouts at our local Y, and I know that in order to be successful at this venture, I need to burn off some calories.  To balance the workout, and to keep myself in shape plus keep my joints moving freely and stay within a good range of motion despite my arthritis issues, I also maintain a fairly decent strength routine.  Back in December, I complained to my doctor that my cardio workouts were just not easy to do.  I'm too heavy and it hurts way too much to run or jog.  The treadmill is nice for walking, but my knees were giving out after about five minutes.  Three things happened when I voiced my frustration.  1)My doctor indicated that she understood my pain.  2)She also made it clear that she knows when I make excuses.  3) She gave me the key step to making it all work.
      Did she give me some sort of miracle answer to my problems? Did she prescribe a drug that would ease my pain, making it simpler to get through those monster cardio days?  The answer is NO!  What she did do was to give me the straight talk on the problems that my excessive weight can lead to, and point out where I am already showing signs of some of these issues.  She also told me that there IS NO MIRACLE CURE for weight loss, there is only hard work and determination to get the job done.  The best advice that she gave me was to keep trying.  She said that if I could only walk 5 minutes on the treadmill today, then do it; tomorrow, walk 6 minutes.  Her advice has stuck in my head and reminded me each step of the way that if I can't walk miles at a time or hours on end each day, it's OKAY.  So long as I keep trying to improve and do not just give up.  Because of this I was able today to complete 1.30 miles in 36 minutes!  I started out spending 5 minutes at a time on the treadmill and with each workout I challenged myself to do a little bit more.  I'm still gearing up for that March for Babies walk at the end of April, but I'm a whole lot closer to believing that I won't keel over than I was when this all started in January :)

I want to hear how YOUR fitness goals are coming along! Chime in with a comment to tell us what you're motivation is and how you're doing so far!

New year, new rules!

   Welcome to 2012!

   

   What are your health or fitness goals for this year? Are they new or being revisited from the list you "never quite got around to"  in 2011?  For me, my main goal is to get rid of a large portion of this extra weight I carry.  No, I'm not throwing hubby out, that's a little more than I can afford to lose!  What I am doing, though, is making a plan and taking action.  

     For years I went about this just like a lot of people, making a "resolution" each January to shed some pounds.  Every year ended with the same result; resolution forgotten, weight gained instead of lost.  This past year, however, I  learned some valuable lessons about goal setting.  In order to achieve our dreams, it is necessary to stop thinking of them in a future sense, ie "some day" or "one of these days" .  Writing resolutions, or dreams, down in terms of achievable goals makes them much more obtainable.  This means that instead of saying "I need to lose some weight this year", I say "I will (or I commit to) lose 50 pounds by Dec. 31, 2012".    Voila, I have just made a commitment.  I set a specific goal, with a deadline!   Now if I don't stick to it, there is a much higher sense of guilt involved.  It actually feels like I failed; and it is the most important person in the world I am failing--ME! I am the one making the commitment, I am the one responsible for keeping it, and I am the only one who can make me do it--although others can certainly offer some highly appreciated motivation. 

     Okay, enough about how to set goals.  I have set mine.  I will lose 50 lbs. by Dec. 31, 2012.  This is going to be fabulous for my psoriatic arthritis!  My aching joints will thank me!  In order to achieve this long-term goal, I have created smaller goals to accomplish along the way.  For instance, every week I will increase the amount of cardio activity I do at the gym by going either 1/4 mile farther or 5 minutes longer than normal.  I understand that there are days I hurt severely and therefore I will not always be able to complete the same amount of distance in my walk, but time spent doing the activity must also be taken into account.  At this beginning point, a 30 minute 1-mile walk is quite strenuous for me (and actually netted some rather serious blisters on my feet last week).  After having a dose of the Norovirus this week, I managed to do 3/4 of a mile today in 20 minutes and felt that was enough.  Next week it's back to adding time/distance.  As another milestone, I plan to participate in the www.MarchforBabies 5K walk happening here on April 28.  Hubby and I did this in 2010 and planned to do it in 2011, but were unable to since I was still off of my meds at the time.  This year I will do it.  This year I will not be the last walker across the finish line.  This year I will be proud of my accomplishment! 

Tofu time

     The challenges brought about by a no-corn diet are many.  There is corn, or a corn derivative in a large percentage of our food products.  I am certainly glad that what I {possibly} have is an intolerance and not an allergy.  If it were an allergy, I quite possibly could end up starving myself, or at least feeling like that is the case.  The one thing that has been the absolute hardest to give up, has been pop (or soda if you prefer).  When I was on simply a low-calorie diet I could work in the occasional glass of Pepsi so that I did not feel completely deprived.  No corn = no high fructose corn syrup = no Pepsi, period.  Ahhhh!!!!

    So, it's already been both frustrating and fun trying to find things that I can still eat.  Today I decided to try some tofu for lunch. This is something I have had a few times in the past, but mostly in Miso soup or at the Chinese buffet where we like to eat.  Today, however, I decided to fry up some for myself.  I used a non-stick spray on my skillet instead of oil to make it even healthier.  Tofu is like a sponge, it absorbs the flavors of whatever it is cooked with, and will soak up oils which will add unnecessary fats to your meal.  We had rajma masala over white rice,with spiced chicken breasts for dinner last night, and the flavors were so delicious I decided to incorporate them into my lunch.  It was delicious!  I am listing my little recipe here, it's nothing special but it might help if you've never tried cooking your own tofu before. 

You can add this cooked tofu to a salad, ramen noodles, broth, or serve it with rice.  There are probably a million other things that can be done with it as well!  I had mine with a half package of ramen noodles, some cheese, and a touch of salsa, for a total of about 220 calories! :) 

     So far it is hard to tell if the new diet has had any effect on my psoriasis or PA.  I  have lost 4 pounds and do have a bit more energy.  Some of my stomach troubles seem to be clearing up as well.  Overall it appears to be a good thing at this point, but we will watch how things develop. 

 

Fried Spiced Tofu:

Ingredients:
     3-4oz Tofu (may be sliced, diced, chopped, or however you prefer)
     Chili powder
     Cumin
     Ground ginger
     Garlic powder
There is really no measurement for the dry ingredients. I simply
used a pinch of each, with the chili powder being a bit larger pinch than
the others.

Directions:
     Mix all dry ingredients together and rub onto tofu slice, or pour over diced/cubed tofu and mix gently with wooden spoon until all tofu is covered with seasoning.  Spray 8 inch skillet with non-stick cooking spray and preheat for one minute.  Add tofu to skillet and cook until hot; approximately 3 minutes for
a 3oz slice--about one and a half minutes on each side.  (You can cook a bit longer if you prefer, but the tofu will start to brown just like chicken, so be sure not to overcook or it will turn into a mushy mess! )  

To learn more about corn in the foods you eat, I suggest reading The Ominvore's Dilemma, by Michael Pollan. 
    

Interesting choices

Hubby and I stopped by the store today for our first venture into the world of no-corn.  As I said before, this is not necessarily going to be easy.  I did manage to find some foods in the allergy section, mostly near the gluten-free items.  What I found was:

Tortillas
Ian's Alphabet Tater Tots
Amy's  Burrito
Keebler Flat

Cutting out corn

     Today my doctor informed me that I should cut out all food products containing corn from my diet.  As if I don't have enough to deal with already.  She said that she's had experience with people who cut out corn and it completely cleared their psoriasis.  This is NOT going to be easy!  We will be talking about this journey in upcoming posts as I learn what foods are available that do not contain corn. 

I've also got some other issues for which we may have to cut out wheat if cutting corn doesn't fix them.  This is going to be a long journey...hope you will stay with me and learn what our foods are made of as well as how they can affect our bodies. 

Disclaimer:  Everyone reacts to things differently, so what works for me may or may not work for you...please discuss any major diet changes with your doctor.

Support

     My husband and I attended a seminar sponsored by the National Psoriasis Foundation and entitled "More Than Skin Deep", in Washington, D.C. last weekend (July 16th).  At this seminar we met some truly wonderful people and gained valuable information for our fight against this disease.  Not only did we learn about the disease itself, but also about treatment and support options, as well as had the opportunity to meet others who suffer from this disease.  We are both very glad that we went.
      Support for people who have psoriasis and psoriatic arthritis is very, very important.  That is one of the main reasons I started this blog, along with reaching out to spread awareness to those who do not understand the kind of struggles that someone with this disease faces.  In addition to my blog, and the newly developed line of awareness jewelry, I am in the process of starting a local psoriasis support group.  I really feel that there is not enough that I can do to help find a cure for this.  I struggled for so long without any answers, and have been dealt both good and bad cards along the way since being diagnosed. It is by the grace of God that I am where I am today.  I want others to know that they are not alone in this fight, to show them that there is someone who understands their pain, but also revels with them in their joy over the smallest of victories. 
     I will do everything in my power to help find a cure.  My husband and son have both agreed to join me for an NPF Walk for Psoriasis, in D.C. on September 17th.  Between now and then we will be working on various fundraising efforts for the walk.  Stay tuned to your inbox for more info. :)

A new direction

     After a long and bitter struggle, I finally received my medication on June 30th.  As per the doctor's orders, I took two shots the first day and one shot a week later (June 7th). I will now begin taking them once every two weeks.  I am one of the lucky people who does not have to wait forever to notice a difference with my meds.  I immediately started noticing a change, not only in my mental attitude and feelings, but also in my physical condition.  My husband also noted these same changes. 
     As I previously mentioned, I was approximately 85% covered in thick, flaky, itchy, and ugly psoriasis patches.  The patches have thinned quite a bit and are much less flaky than before; the percentage of coverage has dwindled maybe 5% already.  I am in shock that it's working this fast, but of course am not complaining!
     It is so amazing to me how many things we do everyday that are taken for granted until there comes a point that we can not do them.  For instance, I am thankful now that I can get dressed by myself, fastening a bra (in the back) and even putting on shoes that tie without assistance from my husband.  Just a few short months ago I spent days refusing to wear anything but a nightgown because it was just too frustrating to try to dress myself and too humiliating to have to ask for help all the time.  My hands would cramp and hurt when attempting to fasten my jeans, my arms ached to the point that I could not even begin to reach behind me to fasten a bra (I only own one front fasten kind), and bending down to tie my shoes, even while sitting, was nearly impossible.  There were days I even had to have assistance taking a shower.
     I am very grateful that I started feeling better when the weather warmed up, and even more so with my Humira.  There are still so many "little" things I look forward to being able to do: sitting on the floor to play with my son, playing outside for more than 5 minutes at a time, going shopping without having to use the wheelchair, wearing dark colored blouses and not worrying about flakes, and I am even looking forward to being able to properly shave my legs again!  I never asked for miracles, I don't want to run a marathon or lift a hundred pounds, or anything fancy...I just want to be able to say "Yes, Mommy CAN  do that with you," for a change instead of having to explain to him about pain and chronic fatigue, things a 3yr old should not have to try and understand.

Faith

I just received a phone call from the pharmacy that my medication has arrived and I can pick it up in 1 hour, YAY!  If I could I would be dancing around the room...give me a month or two LOL!  I think that nothing says it better about handling this long struggle than the words of the following song:

Faith of the Heart
Rod Stewart

It's been a long road
Getting from there to here
It's been a long time
But my time is finally near

And I can feel the change in the wind right now
Nothing's in my way
And they're not gonna hold me down no more
No they're not gonna hold me back

Cause I've got faith of the heart
I'm going where my heart will take me
I've got faith to believe
I can do anything
I've got strength of the soul
And no one's gonna bend or break me
I can reach any star
I've got faith
I've got faith
Faith of the heart

It's been a long night
Trying to find my way
Been through the darkness
Now I finally have my day
And I will see my dreams come alive at last
I will touch the sky
And they're not gonna hold me down no more
No there not gonna change my mind

Cause I've got faith of the heart
I'm going where my heart will take me
I've got faith to believe
I can do anything
I've got strength of the soul
And no one's gonna bend or break me
I can reach any star
I've got faith
Faith of the heart

I've known a wind so cold and seen the darkest days
But now the winds I feel, are only winds of change
I've been through the fire and I've been through the rain
But I'll be fine

Cause I've got faith of the heart
I'm going where my heart will take me
I've got faith to believe
I can do anything
I've got strength of the soul
And no one's gonna bend or break me
I can reach any star
I've got faith


I've got faith of the heart
I'm going where my heart will take me
I've got strength of the soul
And no one's gonna bend or break me
I can reach any star
I've got faith
I've got faith
Faith of the heart

It's been a long road

Oh, it's been long road

Light at the end of the tunnel

     I just received fantastic news.  My application for assistance has been approved and my Humira shots will be arriving on Wednesday or Thursday of this week!!!  My son's birthday is on Sunday (July 3) so I am getting a present that I can share with him; the gift of Mommy being able to be Mommy again instead of a wreck who always has to apologize for things she doesn't feel like doing.    

    I realize it's been a while since my last post; but I am back.  The past few weeks have been a mixture of both good and bad days.  Thankfully none of the days have been as bad as what I experienced over the winter.  I have been able to be out enjoying some sunshine which has helped my psoriasis keep itself in check (meaning that it has not cleared but has not gotten worse either).   When I've gotten a good amount of sun the plaques will start to thin and not be so itchy, some smaller spots even clear up altogether.  However, when I've not been able to be in the sunshine for a few days I can feel the plaques getting thicker and the itching becomes almost unbearable, even with my Triamcinolone cream.
    
     On the arthritis front, I have felt generally okay over the past few weeks.  I've been having trouble with my knees though, still feeling like someone has taken a sledge hammer to them.  I have been crocheting a lot more, creating a baby afghan for a very special friend, and the weirdest thing is that my fingers are not nearly as sore as before, but my left wrist aches a lot.  Not sure if that is the arthritis or a bad case of tendonitis.  Since being off of the Prednisone (about a month now) I have lost some of the weight I gained while taking it, which feels pretty darn good, and I know it helps my joints have less pressure on them.
I am thoroughly looking forward to getting back on the medication and being able to lead a somewhat normal life again...thank God for small miracles.

     I wanted to share with you a story that was recently shared with me.  While my blog is intended to help readers understand more about psoriasis and psoriatic arthritis, it is often difficult for people to grasp what it really means to have this type of disease.  No one can sum up what it is like better than Christine Miserandino did when she developed "The Spoon Theory".  Please read her story, and then take a moment to say a prayer for anyone you know who suffers from any type of sickness or disability. 

So tired...

...of pain, of plaques, of feeling miserable, and of course, of still waiting.  I waited two weeks before calling for a status update on my new Humira application and now it has been two weeks since I first called for the update and I can't even get anyone at the clinic to call me back.  I have to pick up a prescription tomorrow so I will be asking someone face to face about this because I am seriously starting to get upset.  I want some relief from all of this misery instead of having to put on a happy face for the world every day and try to pretend that everything is okay.  IT IS NOT!  I am to the point that most of the time I just want to scream.  I am constantly irritated and that upsets me because even little things drive me right up the wall.  It is not easy to deal with a husband and a 3 (in one more month) year old when all you feel like doing is snapping everyone's head off since you can't just go back to bed and ignore them. 
I would beg for Calgon to "take me away" except that I can't sit down in the bathtub anymore, and the shower chair isn't low enough for me to feel the benefits of soaking in a bath, so that would be pointless.  *sigh* 

Exercise: Empowering or Over-doing ?

  If you suffer from psoriatic arthritis, then you know where this post is going today.  Exercise is recommended to all arthritis patients because it helps keep joints moving, builds muscle, and fights fatigue.  Those all sound like exactly the prescription we are looking for, right?  The problem with exercise, for me personally, is that I tend to feel worse after it than before it.  Most of us are familiar with the pain we feel when we haven't worked out for a while and then start a new regimen; how would you like to feel that way everyday? That's pretty much what happens when I try to workout.
     When I am on my proper medication and can actually move about, I adore going to the gym and keeping track of the results of my hard work.  Times like now, however, when I have been off of the medication for over a year, I have no desire whatsoever to go anywhere near a gym.  The mere thought sends shivers down my spine.  Sure I have good days where a workout would be okay, I could do it.  If I did, I would probably not get out of my bed for the rest of the week.  That is how sore I would be.  My joints would hate me and my body would want to commit mutiny.
   At any rate, I shall not allow myself to sit around and become a vegetable.  This weekend my husband and I are going with my son to his first "marathon"...it is actually a run for little tots that is about a total of 3 blocks long.  While it isn't a huge distance, I know I shall be exhausted after; however, I want my son to know that Mommy is there for him and that I am not going to let this disease keep me down!
     What type of exercise do you do and does it help or hurt? While I realize that exercise can be very empowering, for those in our situation it can be drastically over-doing it at times, even when you only do the most minor things.

The Waiting Game

     When all else fails what do you do? Wait, wait, and wait some more.  The problem with this is that if you are an impatient person like I can sometimes be, it can drive you absolutely bananas! Also, if you are experiencing a massive outbreak of psoriasis along with a severe bout of your arthritis, and the thing they want you to play the waiting game on is the medication that will help you get better, it is worse than frustrating. 
     Once again I have been told that we must start this paperwork process over.  Now I have no idea how long it will be until things are straightened out; no clue as to when the medicine might actually be delivered. I have been waiting for 6 months, and have no other choice but to wait longer.  The depression I thought had been cleared up by the hopefulness that just maybe this time I would really get the medicine is returning.  I am frustrated, aggravated, upset, feeling helpless, and hopeless at times.  I try to find some positive in the fact that I'm not currently confined to the bed like I was for most of winter, I can still do some things.  But each day it feels like the pain is slowly increasing again, and the plaques are driving me insane.  I'm tired of looking like a leopard, itching all the time, having skin that flakes off I even breathe too hard, and I'm absolutely sick of the inflammation and pain.      
     Time to put on some music and let The Nitty Gritty Dirt Band remind me that "if you ever wanna see a rainbow...you've got to stand a little...rain..."

Options

     Okay, so I have a few new readers to the blog now and I am hearing from some of you that you are not aware of all your options out there.  If you have psoriasis and you think you may have psoriatic arthritis, PLEASE talk to your doctor about what treatments are available to you!  A regular medical doctor or a dermatologist can help you find topical medications that control psoriasis plaques, but they will most likely want to refer you to a Rheumatologist, especially if the condition is serious.
     There are many options out there to help with this disease.  If you think this is something you may have, I urge you to be proactive and speak to your doctor about it.  Do not let them brush off your symptoms or simply tell you take some Tylenol (or Ibuprofen) and it will be better.  Those things may help temporarily, but I know from experience that over-the-counter and even prescription meds can stop working after a time.  I was told at one point to take Aleve (or the generic naproxen sodium) "until it stops working or you have to take more than what you're taking now (4 pills per day). Then we will see about getting you on something different."  At the time I was not as savvy about researching things and knowing what my options were, nor did I do a good job of speaking up for myself and making sure my doctor understood how my condition really affected me.  Due to this, I went almost 10 years from the onset of my symptoms to an actual diagnosis and finding some real help.  I can not tell you where I would be if I had gotten help sooner, but I can tell you that I do not think YOU should wait so long to get answers. 

The National Psoriasis Foundation is a fabulous resource you can use to find out about this disease and decide exactly what you should tell your doctor.  Their website is http://psoriasis.org and this specific page http://psoriasis.org/NetCommunity/Page.aspx?pid=324 will give you more information about psoriatic arthritis.

     If I can be of any assistance or answer any questions, please feel free to comment below or e-mail me.