Beautiful day

Today was a beautiful sunny day! I took the pups for a walk, and I heard from two old friends which brightened my day!

But..Im tired. I have a weird swelling along the left side of my spine. No Doctor knows what it is. All I have been told is that its a permanent muscle spasm. Hmmm. Its like sleeping on a rock. So what do they do? Prescribe a painkiller.

If any Doctors are out there reading my blog--help please.

I would like to get rid of the swelling. I would like to enjoy all the beautiful days coherently and unencumbered by painkillers.

Time to get a massage from my daughter whose a massage therapist--I guess it really is a beautiful day!

Avatar

I recently went and saw the movie, "Avatar". It is a great film and I just loved it.For those of you that don't know what an Avatar is, it is basically another vessel for your brain and soul while you sleep. You feel what the Avatar's body is doing. I have decided that if I could have an Avatar, it would be my sister's body. She is a year and a half older than me and her body is a thing of beauty! Not that I am not beautiful, but her body is STRONG. She worked hard to get it that way and works hard to maintain it.

My sister has run Marathons, Triathons, played in Tennis Tournaments, takes Boxing, (I have seen her in a boxing class and she can throw a mean punch! But seeing her muscles work was beautiful.)She also can hike probably farther than anyone that I know. I would always tease her and call her an Amazon woman. Of course, a pretty, petite Amazon woman. So if I could be in her body when she is running or downhill skiing, which I do, but much slower, or snowshoeing......I would be able to do it and feel what she feels- exhilaration. Maybe a few aches after, but she would recover. I, on the other hand, just couldn't do it. That's why I would need her to be my Avatar.

She was recently in an accident in Hawaii. A Crane toppled over and if not for the roll-bar on the jeep- she would have been crushed. I hope that my sister knows just how grateful I am that roll-bar was there. She got out very, very shaken but with no bad injuries.

Yep. She would be my Avatar. But in the meantime, I think that I will try and do more light hand-weight workouts until there is such a thing. Oh...and walk.

Update on the Walking Man

This afternoon my husband and I decided to walk the dogs together. While we were on the walking path, guess who was coming right toward us? The Walking Man! I told my husband, this is it, I have to speak to him. When he reached us, I kind of had to stand in front of him and wave my arms to get him to stop. He had earphones in and took one out and so I said," Can I ask you something?" He replied, "of course." So I said, "Why do you walk so much?" " You have become my inspiration, and I am walking more and more because of you in spite of my chronic pain."

Then he told us his story. He said, "you see, I am Blind. I have no central vision, so I just put my headphones on and listen to the Bible and I walk. I have to keep my head down and stay focused so that I keep on the path. I have found over my long life that one needs to humble one's self enough to be 'teachable'. I have been taught to keep going forth even though I might have this obstacle, after all, I can still 'hear' and I can still WALK." I promised him that I would always remain teachable and try to be humble and we said our good-bye's.

So the Walking Man remains my inspiration, just like the non-juggler in the Bagel shop and I plan on walking and walking until the Lord decides I can't.

It's raining again

I don't want to get out of bed. My ears are ringing, my hands don't want to open and my body feels like lead embedded in cement only that when I move the cement comes with me.
Today is particularly bad because it feels like a hot poker is being stabbed in my left butt cheek and it runs up my back along the left of my spine all the way up to my neck into my head. My ribs feel like they are broken and my shoulders are screaming.
I touch the one place, my oasis, the one place where I have absolutely No pain. My right cheek- well the spot between my cheek and nose on my face. Awwww. I am going to do what I always do. Put my feet on the ground and start my day .

Movement

My husband and I often attend plays at the local Shakespeare Theatre. It is a beautiful outdoor amphitheatre and it is so relaxing. We went to a play and I don't even recall the name of it, I think it was the "Tempest". One of the characters was this lovely young woman and I couldn't keep my eyes off of her because of her MOVEMENT. She was lithe yet strong and almost floated- and when she danced, oh when she danced I would have given my life to be in her body just to feel what that felt like. It brought tears to my eyes. We were sitting with our friend whose husband was in the play and I looked over and saw tears in her eyes too. She has MS.

Movement. I wonder if people are GRATEFUL for their day to day movement. It's raining again today and it took Herculean effort on my part just to walk across Albertson's and carry the kitty litter. But I am grateful for it. I did it. I didn't have to ask for help.

Movement. When someone cleans their house with no effort, or rakes their leaves, or takes a jog, or throws a frisbee, or rides a bike, are they aware of the movement of it. Are they grateful for it?

I have two older daughters, one 26 and one 21. They are grateful for movement. One is a Massage Therapist and Gymnastics Coach, the other in Nursing. They both were gymnasts. They can rock climb- oh my- I don't know how they do it. And they both can still flip around, not as easily, but they can. And they are grateful for it. I am glad about that. Movement should not be taken for granted. It is a gift and it should be cherished.

Today I am going to stretch in spite of my LACK of movement. And be grateful for it.

The Point of this Blog.

Quick facts: Autoimmune Disease is the eighth leading cause of death among young and middle-aged women in the U.S.. 1 in 9 people stricken with Autoimmune disease are women. So there are a lot of sons, husbands, fathers out there with this disease too. It derails the lives of at least 23.5 million Americans. The number of people with Autoimmune disease doubles that of cancer.
Autoimmune disease affects children and shortens the lifespan of adults. These diseases include: Lupus, Scleroderma, Rheumatoid Arthritis, JRA, MS, I.B.S., Chrohn's disease, Psoriasis in it's many forms, Psoriatic Arthritis, Spondylitis, Ankylosing Spondylitis, Type 1 Diabetes, Graves disease, and many, many more.
Many people stricken with one of these is also stricken with another. They often hit in pairs. I dedicate this blog to my millions of comrades out there suffering in silence but living strong with these insidious diseases.

my story

So now that I got the facts out - I wanted to let you know that I decided to write this blog thinking that it would not only be cathartic for me, and helpful to others who share my experience, but also educational for those who know someone, love someone who has one of these diseases or for someone who just doesn't understand why we whine all the time. Especially when it's cold or rainy.
My story begins at 13. I had a bout of Strep throat that mis-fired and went to my kidneys causing Nephritis. I was a pretty sick kid. Then I came down with Strep again and it went to my skin causing Guttate psoriasis. I was covered with very small plaques of psoriasis. They call it "teardrop" psoriasis because the plaques are so small - only problem is, it covers 90% of my body and stays for months at a time! It's like having poison oak for months!! Itchy! Sore and bloody. Ugh.
The first doctor my momma took me to said it was mites. Oh brother! I don't know how long it took until they realized it was Psoriasis, but I do remember the Coal Tar. In those days, it was all they had in the war against Psoriasis. Coal Tar. My momma would slather it on and wrap me in saran wrap. It was awful.
As I grew older, I was having awful low back pain. One day it was so bad, I even passed out from it. I almost didn't wake up, they had to use mouth to mouth resuscitation. I guess that was my first memory of the start of my pain.

I dream about running- man in Bagel shop - I feel the rain

In almost every dream that I have- I'm running. Sometimes I will wake up and want to take a run! I have even put running shoes on and started out on my run. But then reality hits- my body fails me - it feels like lead and I am grateful I can walk.

I met a man in the Bagel shop when I was with my beautiful daughter, who is a rock climber, and we noticed first how happy he was. Then the wheelchair, then the fact that he had no arms or legs. And there he was drinking tea with stubs that used to be hands, having a conversation with a friend. He was laughing and smiling the whole time!
So we see him throw his jacket on over his head with no help and get it on and as he started to leave, I said,"you are AMAZING!" and he quickly replied,"well thank you , but I can't juggle!" to which my daughter said, "niether can we!"

God- I love moments like those!

Perspective.

I FEEL the rain coming. Nothing I can do. I will just try and think of that man and how if I wanted to juggle- I could.

Haiti- and the example of gratitude

I was watching Larry King Live last night and there was this incredibly gorgeous girl with the most beautiful smile on her face! You would NEVER know that her leg had just been torn off in the Haiti Earthquake. She was so vivacious and grateful to be alive!

Larry asked her what her major was and she said, "Sustainability". WOW. I was so awestruck by the spirit of this young woman. She was down in Haiti teaching them how to be able to take care of themselves and sustain their own country and also teaching English. She came back with one less leg and was JOYFUL. That is Inspiration!

Today I will not let anything get to me. My pain is nothing but a realization that I am here- I am alive.

there's this man....

I will call him the walking man.  I see him everyday, rain or shine, and he walks. And walks. And walks. But he is special this man because he is my inspiration and probably someone elses or several people's inspiration. He must be in his 70's and I know he has Arthritis because he is crooked - I never noticed this before. all I ever noticed was the cool white solar clothing that he always wears and his long walking stick that he never uses except to swing by his side. Today I noticed he was crooked because it was a beautiful sunny day and I was able to walk the dogs along the big loop which takes me to a walkway/bike path and I fell in step behind this wonderful man-that's when I noticed just how crooked he was! What luck! What a gift. I fell right in step, left right left right so fast, so determined! it didnt matter that he was crooked- hell it didnt matter that I was crooked! there we were the two of us and my dogs like one with one doggedly determined purpose- to take a walk in spite of our pain! the dog's pain was me pulling their leashes so hard in my trance! oh yes! for those few moments I threw off my cloak of cripple and made it that mile and a half!  Someday if I can ever catch up to him- I will thank him.

Good day.

info.

for those that need good solid information on Psoriasis or Psoriatic Arthritis you can visit: www.psoriasis.org or www.arthritisfoundation.org or go to the Johns Hopkins Arthritis website where there is lots of very good information on all the Autoimmuneconditions along with every Arthritic condition including Osteoporosis. 

my story cont.

So....my pain would come and go, get worse and worse until after I started having children I was finally diagnosed with Fibrositis, which is now called Fibromyalgia. I thought that was my answer although I was still dealing with these horrible outbreaks of psoriasis.
I was a very active young mom and basically ignored the pain. I would push my body to it's limits and pay for it later. I had my fourth child and had to have major surgery - I wasn't meant for child-bearing- that's all I will say, but it was the first of many. I also have endometriosis.
I taught gymnastics for several years and roller bladed everywhere. But I couldn't run. I would try and try, I just couldn't do it.
As the pain became worse, I would go from doctor to doctor, always the same- Fibro. The years flew by and we ended up moving to Boise, Idaho. I researched Rheumatologists. There was a family history of Rheumatoid Arthritis and with the Psoriasis, I thought that there had to be more to it- the pain was just too bad.
I ended up going to a Dr. who had come from the University of Utah Medical school which I knew to be a GREAT school. His name was Dr. Knibbe and he had just opened his practice here. He took one look and knew. Psoriatic Spondylitis. I said, "Psoriatic spondywhatwhat?" He sent me for xrays of my pelvis to verify the diagnosis and sure enough he was right on! After so many years. Now only my comrades will understand this- I was so happy!! I finally had a diagnoses! Yippee! But why did I have a positive RF?? Oh well, who cares?! I had Psoriatic Spondylitis. I had something. I wasn't crazy.

Sunny Thursday

I woke up this morning to sunshine! I have a crystal hanging in the windows above my bed and there were glorious rainbows all over my room! I started stretching before I got out of bed, knowing that today- I might just accomplish something. It's not raining! My body reacts to the sun...it flows better if cement can flow.
I didn't even mind the bruise on my heel when I stepped onto the floor and I even went straight away into my arm exercises! I feel stronger today. Life is good.
I think I might even clean the house today. I have decided that each day I am going to give myself a challenge, to encourage strength instead of dwelling on my pain. Today's challenge is: complete exercise on treadmill even if it's just 10 minutes and finish cleaning, dusting, counters and that's enough for today. If I do more, I am invincible!
I might even walk the dogs??

Research of Psoriatic Spondylitis

Well, I had the diagnoses. Next came the plethora of drugs, failures of drugs, and the journey I am still on. I research everything! I found out that my Doctor, I call him the Big KNIB, out of undying love of course, calls it Psoriatic Spondylitis because it is a form of five types of Arthritis- Spondylitis meaning it is in my spine. My cervical, thoracic, and lumbar spine randomly fuses. I have to be careful with posture and stretch a lot! The bone becomes brittle. I have already had a spontaneous break of my sacrum. I have Osteopenia and Osteoporosis in my left femoral head, of my hip. I am only 48. I also have Sacroiliitis. and let me tell you! Fused S.I. joints hurt like the Devil is punishing you over and over just for the hell of it!
Research is GOOD. A lot of people don't let their doctors know they research their diseases, or they play dumb or they are just ignorant and they do what ever their doctor tells them to do. I say- be PRO-ACTIVE. Fight with everything you have for yourself. Your body is already against you, you have to stand up and learn and pass on information and advocate for other people.

Thursday

I visited my P.A. today. I think she's great. A hoot! She always makes me laugh. I was in so much pain, that when she walked through the door, I said, "Janeen, I think I am clinically depressed!" "I am fat!" "I can't take it anymore." You see, I had gained 20 pounds- I am 5'7" because I shrunk a damn inch and went up to 155! I have never weighed that much in my life!! I have now lost about 7 pounds. but sheesh! She calmed me right down. And then came the question. "Why did you stop taking your Humira, (Humira is one of the Biologics, Anti-TNF's given to us)?' I replied, "well, it wasn't helping anymore with the pain and I got my eighth skin cancer!" To which she said,"Humira has nothing to do with skin cancer, nothing I have read, none of the conferences I have been to, no literature states that anywhere." Intelligently I said," well I was told by the doctor it had a direct effect and also on Humira's own website it posted a skin cancer warning!" to which she said, " Well, I didn't see that and you are very fair and have green eyes(my eyes are dark blue) so...." So I said, "look, let's not argue, it gave me those horrible sinus headaches, you know that." To which she replied, "oh yes, that's a listed symptom" "I will tell the doctor, we'll see what we can do for you." Now I LOVE this P.A. but I swear on all that is HOLY - when I got home with my brand new Arthritis Today magazine, I was flippin' through the pages and what do I see? A title that read, are you ready? It read, Anti-TNF Biologics Linked To Skin Cancers !!!!!!!!!!!! I rest my case.
But I did get a nice cortizone shot in the butt.

Walking the Dogs

Today I decided to walk the dogs. I am sick of the treadmill and felt like getting outside. We have a white Siberian husky, and two pugs. They are great dogs and I feel that I can do it since it's not raining. The more I move the better... the more I move the better... the more I move the better......
So we start out and everything is fine until I go off-trail so that my husky boy will go poo. He has everything on his mind but making poo and he starts leaping like a gazelle over the sagebrush while I am holding on to three leashes! Then he suddenly sees small field mice and charges after it for a quick snack taking me and the pugs with him pulling me out of my shoe, my shoulder nearly out of it's socket with leashes wrapped around me. I just stood there yelling at him that he was a bad dog and why couldn't he just poo? Now I have a bruised heel that of course I have to walk on! After a full hour- no poo.
But I did get exercise and it was a nice day.