RSD FAIRY UPDATES

JUNE 4, 2012~  


A LOT HAS HAPPENED IN THE 9+ months since I last wrote. I don't remember if I wrote that I moved back to the foster home in Junction City back in October or not?? It's gone pretty well. I was able to get my own dog. He was a chiuiauia named scooby and he was a sweetie, but about a month in he ended up biting my nurse so the owners of the home said I had to get rid of him because they couldn't take the chance of being sued. I understand where they were coming from but it was sad. I found him a real good home right away and I've recently heard that he's doing real well!


I'm getting ready to move again this coming sunday. I'm moving into a mobile home with my ex sister in law; Valerie. We've known each other since I was 12. I'm excited to be getting out of the foster care system as I'm not needy nor old enough for it, as far as I'm concerned.


The state will provide a caregiver and I'll get food stamps again. My rent will only be $350/mo. which is $200 less than I was paying here. it'll be nice to be able to go shopping once in a while and save a little each month so I can eventually go down to so. california and visit my Mom and Vincent.

I have recently learned a lot more about RSD and the various symptoms that can accompany it.  The Sympathetic Nervous System controls the functions of the body that we don't have control over, due to this I have discovered that my mucous membranes aren't producing enuf saliva, which is why I have had to suck on hard candies constantly for years. I thought it was due to the meds I take, but it's far worse than that and not only that but I have a hard time swallowing due to this and have to swallow food with water.
I also developed chronic dry eye and was told it was also due to the RSD. Now I have to use restasis drops twice a day for the rest of my life.


I also have developed Osteoporosis in my spine and hips. Now, this is quite common, but not at 48 years old. I also have DDD now; (Degenerative Disc Disease) all up my spine.
What the hey??????? I'm not even 50 and I'm falling apart!


I still have the same Dr. who isn't treating my pain adequitley, so I haven't been able to function very well. Why can't these quacks realize that people who are truly in severe chronic pain need the meds to do anything? Just riding the van to the store causes my legs, feet and back to flare up, let alone shopping. By the time I get there I can only shop for a short amount of time then, I have to turn around and go home. WAAAAAAAA!AAAAAAAAAAAAAAAA!!!


I feel like a whine-bag, but actually I feel it's important that we share what's going on with our RSD so others with this can be informed.  We need to stick together and help each other in any way we can.

RSD AWARENESS DAY/EXPLANATION

Here's a good explanation of RSD I found on facebook. I thought I'd share it with other RSDers and anyone else who cares for someone with the dreaded fire monster!  Please participate in the Orange awareness day. sounds fun. now I just need to find orange nail polish. lol.

Awareness of RSD/CRPS

Saturday, August 27 at 8:00am at ALL OVER THE WORLD.

Ok Ladies and Gentlemen it is time to do something to raise awareness for the little-known disease called Reflex Sympathetic Dystrophy (also known as Complex Regional Pain Syndrome). For one day (8 am till 8 pm) We are asking the Ladies to either paint/or get their nails done orange and for the gentlemen to wear an orange shirt. Please participate to raise awareness. Reflex sympathetic dystrophy (RSD), also known as complex regional pain syndrome (CRPS), is a chronic progressive neurological condition that affects skin, muscles, joints, and bones. The syndrome usually develops in an injured limb, such as a broken leg. However, many cases of RSD involve only a minor, seemingly inconsequential injury, such as a sprain. And in some cases, no precipitating event can be identified. Pain may begin in one area or limb and then spread to other limbs. RSD/CRPS is characterized by various degrees of burning pain, excessive sweating, swelling, and extreme sensitivity to touch. Symptoms of RSD/CRPS may recede for years and then reappear with a new injury. Types: Two types of RSD/CRPS have been defined: Type 1 - without nerve injury Type 2 (formerly called causalgia) - with nerve injury Both types express the same signs and symptoms. Incidence and Prevalence Millions of people in the United States may suffer from this chronic pain syndrome. RSD/CRPS affects both men and women, but is more common in women, and can occur at any age, but usually affects people between 40 and 60 years old. The National Institute of Neurological Disorders and Strokes reports that 2% to 5% of peripheral nerve injury patients and 12% to 21% of patients with hemiplegia (paralysis on one side of the body) develop reflex sympathetic dystrophy as a complication. The Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA) reports the condition appears after 1% to 2% of bone fractures. Causes and Risk Factors RSD/CRPS appears to involve the complex interaction of the sensory, motor, and autonomic nervous systems; and the immune system. It is thought that central nervous system (brain and spinal cord) control over these various processes is somehow changed as a result of the injury. Conditions associated with the onset of RSD/CRPS include: Trauma (e.g., bone fracture, gunshot and shrapnel wounds) Spinal cord disorders Cerebral lesions Heart disease, heart attack Hemiplegia (paralysis on one side of the body) Infection Radiation therapy Repetitive motion disorder (e.g., carpal tunnel syndrome) Surgery In 10% to 20% of cases, no direct cause can be found. Injury that precedes the onset of RSD/CRPS may or may not be significant. RSD Signs and Symptoms The symptoms of RSD/CRPS may progress in three stages acute, dystrophic, and atrophic although this notion is subject to debate. Acute: burning pain, swelling, increased sensitivity to touch, increased hair and nail growth in the affected region, joint pain, color and temperature changes; first 1-3 months Dystrophic: constant pain and swelling, limb feels cool and looks bluish, muscle stiffness and atrophy (wasting of the muscles), early osteoporosis (bone loss), 3-6 months Atrophic: cool and shiny skin, increased muscle stiffness and weakness, symptoms may spread to another limb Characteristic signs and symptoms of sympathetic nervous system involvement are : Burning pain Extreme sensitivity to touch Skin color changes (red or bluish) Skin temperature changes (heat or cold) Pain is usually disproportionate to the degree of injury and can be triggered by using the affected limb or by stress and can be spontaneous or constant. Symptoms associated with an immune reaction include: Joint pain Redness Swelling Accumulated immune cells in the site Frequent infections Signs of motor system dysfunction include Difficulty starting movement Increased muscle tone Muscle spasm Tremor Weakness Other symptoms include: Migraine headache Excessive sweating Fatigue Dermatitis, eczema Complications Patients with any chronic illness, including RSD/CRPS, often suffer from depression and anxiety. Skin, muscle, and bone atrophy (wasting) are possible complications of the syndrome. Atrophy may occur because of reduced function of the limb.

Surviving Pain: Mental Illness vs. Physical Disease

Surviving Pain: Mental Illness vs. Physical Disease

Mental Illness vs. Physical Disease

This subject is really getting to me, especially recently. First, a very dear friend, who I haven't spoken with for a year but who knows how much better I'm doing asked me if I was walking yet? I was very hurt by this. Because my Mental Illness is finally under control doesn't mean my Physical diseases are cured!  Also I've had several doctors who when they find out I have a mental illness, treat me like my physical condition isn't real, it's just 'All in my head'. I have been told that my pain is a somatization disorder, which, basically is the same thing as psychosomatic or in simple terms; all in your head!

I am so frustrated!  Don't these idiots have enough education to know that mental illness is a completely different animal than physical disease? I mean, yes they are intertwined in some ways, but, they are also very different. It is possible for a mentally ill person to develop physical diseases!Until my current doctor, I couldn't get a doctor to treat my pain, I suffered for a year, feeling like I was going to lose my mind ( even more, lol) because of the intense, severe pain.

I have a condition called RSD/CRPS: (Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome)  It's been a recognized condition since 1865 when a doctor in Philadelphia started noticing the symptoms in some of the soldiers he was treating in a hospital there.  It was then and for many years called; Causalgia which is latin for: Burning Pain'. The burning is just one, but the most awful, of a myriad of symptoms.

 It is not curable, though on rare occasions some people have gone into remission. I did, back in 2001.  I was diagnosed in 1998. I was in remission for 4 1/2 months. it was heaven!!!!

Then, the RSD Monster began to rear it's ugly head in an even feircer manner. Not only did the pain return but all of a sudden my legs would just give out on me and I'd just fall. This would happen on various occasions, without warning. Then, on the last day of 2001, I was in a car accident. I only got whiplash, but this disease can spread or get worse from the smallest thing, even just a needle prick, so within 2 months, the symptoms, especially the pain and falling got ten times worse. I couldn't go for the long walks I loved anymore, every time I walked I'd fall at some point, so we decided I should be in a chair to get around, after  I had fallen into a busy street and just missed being hit by a car.

That was 9 years ago and I've been in a chair ever since. For the first 6 1/2 years I would get around the house, holding onto things but now I can't walk at all.

What really sucks about RSD- I should say one of the many things- is that it's unlike any other condition. Like Fibromyalgia, which I also have and have had since I was 16, the more you move the better it is for you. But with RSD P.T. and movement only make it worse.  So, what do I do? I went to a physiatrist (A doctor of Physical Therapy) who knows alot about RSD, which is the first doctor I've met in Oregon who has even heard about it, had prescribed me a power chair because all the years of pushing myself caused carpal tunnel in both hands.

Back to the mental illness issue:

I have bi-polar type II, which is referred to as bi-polar depression. I've been depressed my whole life. but I have moments of either really happy and outgoing, even loud. Or moments of intense anger and frustration. but, mostly I'm just depressed.

When I began using a wheelchair, I took to bed and spent 8 years there. My son; Vincent helped me alot and all his friends knew me from visiting bedside.

Over a year ago, My stress at home was just out of this world! which only made things worse! My caregiver wasn't doing her job and my house was a complete mess most of the time, which due to a little ocd on my part, drove me crazy as I couldn't do anything about it. the depression got worse and the state came in and moved me into an adult foster home. the final decision was mine, but I was so bad off, I just agreed.

Something happened to me about 3 weeks after moving, I had no more stress, I had a new companion dog; Buffy ( my neice gave her to me for christmas) and I had someone to care for me and for the first time in years, I was calm and not depressed so much.

I decided to start fighting back against the desire to give up and got myself out of bed, I even put my laptop on a desk, where it still sits today, so I would have to sit up and use it, I wouldn't allow myself to lay down during the day, except for short periods to help alleviate the pain. I began taking pictures, crocheting alot, reading and just keeping busy.

Today, I'm still in the foster home. I'm quite happy, though I still suffer, of course, from the intense pain and fear I will never walk again, I get out of the house and go for rides to the store, or whatever.

The only thing missing in my life is my companion. she passed away last november and I'm still heartbroken and lonely for her. But, my caregiver wont allow me to have another dog. I just need to adjust.

I spend hours outside reading. I have found that as long as I have enough distractions, I can do one thing until the pain gets too bad, then move onto another thing, etc...

I like my life now. Whereas a year and a few months ago I was just wanting to die. that's all I wanted! now I want to live, I want to see my grandchildren someday, I'd like to transition into my own place again sometime.

I have hope! but more importantly I have a strong faith in the Lord! I plan on going back to church soon.

I want everyone who suffers from a IPS (Intractable pain syndrome) to know there is hope, just take the bull by the horns and refuse to give up and give in to the depression! Fight, fight, fight!

Blessings to all!

Margot

Hands etc...

When my emotional transformation began to take place, after moving here to Junction City this past March, I was anxious to get as healthy as possible.  I started by doing laps up and down the ramp here at home, which is rather long and steep. I increased the number of laps weekly at first, then daily. After about a month of this, I began having severe pain, numbness and tingling in my hands.  I, then started getting depressed because I was so afraid that the RSD had spread to my hands and without the use of my hands, what do I have? I already don't have the use of my legs!

I told my new Doctor about this over a month ago.  By then, the pain, which is a severe burning-type pain and numbness would wake me up every night.  He sent me to a Physiatrist (Dr. of Physical Therapy) who did a couple of tests and determined that I had carpal tunnel in both hands! Wow! What a relief!  Carpal Tunnel can be managed and I am now looking forward to getting my braces and being able to function again.  She wants me to wear them for 30 days, then go back in and see if that's all the treatment I need, which is what I'm shooting for!

Unfortunately, I can no longer do the action of pushing myself up and down the ramp anymore as this is what precipitated the carpal tunnel in the first place, so now I need to get an electric wheelchair, God willing!

I Started going to Ai Chi classes at a local indoor pool.  It's 95 degree, salt water and the ai chi is like tai chi but under water.  It is so awesome, I love it!  I'm allowed 10 sessions in 2 months.  Unfortunately, the pool doesn't get city subsidies and is now looking to be shut down if they don't come up with enough money by next month to keep it open.  If you're a prayer, please pray for the Tamarack Pool to stay open as it is so helpful to a lot of people for a lot of different reasons.

Up until February of this year, I had spent the previous 8 years in a self-imposed prison, of sorts!  When you're living it, you don't know why you're there, you just know that the pain and depression are all-consuming!

In july of 1998 I was diagnosed with RSD (Reflex Sympathetic Dystrophy) or it's new name: CRPS (C omplex Regional Pain Syndrome)  This was brought on by a simple, yet painful fall at work in which I sustained a mild contusion in my left knee. No biggy right? Wrong! The pain just kept getting worse. Workman's Comp. sent me to a Orthopedic Surgeon, who did  minor surgery, followed by alot of testing and Physical Therapy. 6 months later, the pain wasn't just in my left knee any longer, but in both knees and feet.  Not only that but there was a variety of pain, depending on the moment, the body part and sometimes the temperature outside.  The worse of which was the deep burning in my feet.  This is where the diagnosis came in.

I, then started seeing my PCP, who tried to help me control the constant pain with Morphine, tylenol #4 and Soma.

One day in March, 2001 my whole Church prayed over me and within 2 weeks the pain was gone!  I thought the Lord had seen fit to heal me! I was ecstatic!  Of course, I still suffered from the much less severe Fibromyalgia pain and continued with the tylenol #4 and soma for this. I immediately, got a job in the local hospital in apple Valley, Ca. where I lived at the time.  It felt so good to be 'almost' "normal" again! 4 months later, the pain started again and along with it came another very strange symptom; Falls!

I'd be walking along, minding my own business and BOOM! down I'd go! No warning, nothing!

I ended up getting fired from the hospital because I was missing too many days!

That's when I got one of my hair-brained schemes and talked my husband at the time, into selling everything we owned and moving to Oregon!  Actually, this scheme is one that, nine years later, I don't regret!  I love it here!  It is so beautiful and green!  

On December 31, 2001 we were in a rear-end collision and I sustained whiplash. No biggee, right? WRONG!  For some reason it caused the RSD to spiral out of control.  The pain was so much worse and I was falling a lot more!  By March, 2002 I was in a wheelchair and 8 years later, still am!

It's been so difficult to get Doctor's up here to treat chronic pain, even RSD, which is known as the worse chronic pain known to man!  All I could do for the pain, even when I was prescribed meds, was lay in bed.

In August of 2003, my husband left us and moved back to California.  My son and I were all alone up here and the poor guy had to take on the responsibility of caring for an invalid mother.  I hated it!  I'm sure he didn't care for it either.

In December of 2004, we got accepted into Government housing.  We got a nice little duplex. However, we had no help to move.  The Church Vincent had been going to for 3 years was too busy to help!  One lady, who had been giving Vin rides to church brought one load over, which is how we got our beds, couch, etc... then my brother and nephew brought a couple of loads over in his van, but it ended up we lost most everything!

For the 5 years we lived there, I dug myself deeper and deeper into my 'Cell' and rarely came out.  It was such a difficult undertaking just to get myself ready to go somewhere, just to be stared at with either; pity or dislike, that I gradually stopped going anywhere.  Actually, that had happened a few years before.  By the time we lived in our duplex, with the vertical blinds on my bedroom window, that looked just like a cell, I had stopped going outside at all, unless I had an appointment, but I even missed most of those.  I was dropped by specialists, counselor's and Psychiatrists due to my not showing up for so many appointments.

I always had one caregiver or another, who I relied on for almost everything!  The only things I did myself was get dressed and shower, and sometimes even then I got help. ( I did all my own pottying, lol thank God!)

In January of this year, 2010, Vincent moved down to No. California with my Neice Rossi and her family.  I kind of wigged out and the stress of running my own place, with a constant mess my caregiver wasn't taking care of and the worry that I would be kicked out due to some of  "The Kids", (friends of Vincent's who I kinda adopted) staying there without permission from the state, when my Caseworker suggested I move into an Adult Foster Care Home, I jumped on the idea!

I do kind of regret it now.  If I had been better able to handle things, I could still be in my own place, with all the things that meant so much to me, still with me.  But, on the other hand....it was the best thing I ever did!

I'm not sure if it was the removal of all the stress, the new combination of Psych Meds, the having to go outside to smoke or a combination of all of the above, but over the first 2 months I lived out here,  My life changed completely, for the better!  I started staying up, out of bed all day, besides the brief respites to lower the pain level.  I stopped watching T.V. during the day, for the most part, when for the 8 years prior, my T.V. was always on.  I began to do my Crocheting and working here on the computer.  I have a laptop, but I moved it across the room to my desk, so I'd have to sit up and work on it.  

I began keeping my room clean, making my own bed everyday, taking more baths, brushing my teeth and washing my face and doing my hair, every day!

I have to admit, I really let myself go in the 8 years prior.  I was in a state of almost continual deep depression.  Now, even on bad days, I take care of myself and my buddy: Buffy

I haven't missed an appointment in 6 months now.  I see my counselor every week, without fail, whenever I make an appointment, I go to it!  That is a huge deal for me!  I've realized that, although it is quite normal for Intractable Pain Patients to seclude themselves from the world, it's not necessary!

It helps my pain so much to function this well, to be self-sufficient.  My caregiver doesn't have to do much for me anymore.  All she really needs to do is: my laundry (but, I fold and put them away and make my bed), Cook and distribute my Medications.

I look forward to my future for the first time in many, many years!  I no longer am just waiting to die, but enjoying (for the most part) living!  I can't wait to see what's next for me!

I'm grateful to God, My son; Vincent and everyone who put up with me for so long, for sticking by me, although I must have been a real 'downer' to be around!

I've discovered a new hobby as well,  Photography. Just me, my dog and my $15 ebay camera and I start snapping.  I don't know anything about photography, but it's fun to try to find the right lighting and angles to make the best shot, not to mention the fact that it gets me out of the house and keeps me distracted from some of the pain!     Hobbies are important for anyone, they relax us when we're stressed, give us a huge boost to our self-confidence, not to mention self-worth and for those of us in chronic pain, they distract from the pain, if only for a short time!

I recommend everyone find a hobby. One of my favorite things to do is color posters.  You can buy the posters online, at different skill levels, buy some markers, I use gel pens and go to town! It's creative and gets those creative juices flowing.  Another thing is paint by number.  I've done a couple that were drawn by my favorite artist: Thomas Kinkade, they're a lot of fun!

The biggest lesson I've learned over the past 81/2 years is not to give up and don't think about tomorrow. Just live one moment at a time,  because otherwise, it becomes too overwhelming and it can overcome you all too quickly!