Saturday, July 31, 2010

-A Long Day,Quiet Weekend-

It took over a month of torture tofinally get my pain management to confirm what I suspected to be RSD.

One month ago, I realized the pins in needles in my ankle were similar to the ones I had in my shoulder when I wasn't having a flare up- and I kid you not, the next day, my ankle hurt so bad, all the way up to my butt check (the politest way I can put it), I could not walk.  I called my pain management doctor's office hoping to get some kind of help- they respond by telling me the following:
  1. "RSD does not spread"  (Yes, it does)
  2. "The doctor is on vacation for a week.
  3. "Our nurses are over booked and under paid."
I was so frustrated, and hurt so bad, I broke out into tears.  No one should be treated that way, especially a person being treated for chronic pain. I did get the reception's name.
That night I ended up in the Emergency Room for 4 hours, just to get a shot to relieve the pain over night so I could sleep.  I also ended up with a prescription of an opiate I had never taken before.
Later that week, I was back in the ER. The medication they prescribed was making it hard for me to breath.  I spent the entire day there.  My fiance asked his mom to babysit, so we didn't bring our son to the ER.  They sent me home and told me to see my GP and take my old medication- I was back to where I started, and very frustrated.

When I saw my GP, he couldn't understand why the pain management hadn't started me on Lyrica yet, and then took me off of Nortriptyline, because I had an extremely low blood pressure (hypo-tension).  I was taking Nortripliline not for it's anti-anxiety purposes, but to treat nerve pain. 
As a result, a day later, I ended up back in the ER.  Extremely frustrated, and at my wits end, I was hoping they would send me home after conducting at least a X-Ray of my back to rule out the possibility of a pinch nerve.  Instead they sent me home, and increase my opiate intake.

I had my stellate ganglion block 4 days later.  The surgeon was aware of the way I had been treated by her office, and had known I had not yet seen my pain management doctor.  When I came in, and she found out that I had been back to the ER twice, and still had not heard from the office, she called herself, and made me an appointment.

Friday, I saw my doctor.  Beyond frustrated, exhausted, and emotionally drained, I waited in the office with my son and fiance.  I hadn't been able to play with my son all month, hardly able too keep up with him.  My fiance had been my emotional rock and stood by me even when I took my frustrations out on him.

The doctor came in and apologized.  Talked about a SCS implant (I'm not interested, everyone who has had one that I've spoken with hates it), and wrote me a script for steroids. He will talk to my neurologist about Lyrica, and sent me home.

I'm going to a new pain center on Monday. No one should have to wait a month, and be treated any less than a human being. 

Wednesday, July 28, 2010

A Quick Ode To Moms (and Dads)

I want to take this moment to thank all the parents out there who stand by their children who are going through chronic illness.  As a relatively new mom, I know the worry I feel when my son is sick, or bumps his head.  I could never imagine the panic, frustration, and suffer a parent of a child who has a chronic illness must feel.

I was diagnosed with Epilepsy at age 13, and have seen what worry and stress it can do to a family.  As I have gotten older, and my medical needs have increased, I have been blessed enough to have my mother by my side.  I will never have the words to thank her, and can only imagine how she feels.

So I want to take this time and let all of you parents out there that we do appreciate what you do for us, no matter how young or old we are.  It takes an extremely strong person to care for a child and put all of their needs before their own, and there should be an award for what you do.

Thank you.

Twitter, Customer Service and Plastic Dolls

I know what your thinking- where is she going with this....
It seems these days that if you have any kind of customer service problems that you want taken seriously, the best way to resolve them is via Twitter.  Well, I recently had taken issue with a gym I joined, Planet Fitness, and that is exactly what I did.  This is my Twitter story-

A few months after I gave birth to my son, I figured I would join a gym to help ward off the baby blues.  Planet Fitness was having there 'Special' join for $29.99 a month, and bring a friend.  It sounded like a great deal, since I can't drive (because of my epilepsy).  This way whoever drove me, could work out with me as well.  I probably went a total of 6 or 7 times total.  Maybe 14 at the most (and that is pushing it).  I haven't been back since my son was at least 6 months old, and he is almost 2 years old now.
In that period of time, little did I know, they had continue to bill a bank account I thought I had closed.  I do not blame them.  That is my fault.  I should have been keeping tabs on it.  Luckily (and unlucky for me), it had overdraft protection, and I racked up about $500 in gym fees, for a membership I wasn't using.
I received a letter last month letting me know that I owed Planet Fitness money.  You can imagine I was a bit shocked.  In  the past year, I have been dealing with being a new mom, been diagnosed with RSD, and been through so many tests and medications, I couldn't count.  Planet Fitness was the last thing on my mind.
I ask the woman on the phone if I could cancel my membership.  She told me I had to come down to the gym to cancel my membership. I explained to her I couldn't drive, or walk, and she asked me if I could get a cab.  Affened, I politely ended the call.  I had to wait until it was convenient for someone else to take me.
Well, a couple hours turned into another month.  I couldn't be mad at my family, though. They already drive all over God's great creation to get me to the doctors', and the Emergency Room, and help me with ever day tasks we all take for granted.
I finally got to the gym, and was hit with another $59.00 that I owed.  I paid it without complaint.  I just wanted it to be over with it all.
I Twittered about my experience.  I understand there are policies in place for reasons.  I don't want my money back.  Neither Planet Fitness nor I expected the medical complications to become a factor in or 'business relationship', and I did agree to all terms when I signed the paper.
But I wish they would take to heart that not all of their customers fit the mold of the perfect customer.  Not all of us just go on 'vacation for a year', as their representative said to me in a phone call, when I asked why they didn't call members who where inactive for a year.  Some of us encounter unexpected events in our lives that are more important then going to a gym.
And if I understand that when I say their employee didn't tell me that you can 'cancel your membership by mail as addressed in the policy', I know it is here say, but I think it is important that the company be aware of where I am coming from.
I am an individual who is not looking for reimbursement.  I was just trying to give suggestions to prevent further problems like this from happening.  There was no need to be rude. 

So, if I haven't bored you with my long story, I would love to hear your stories of how you haven't fit the plastic doll mold of other companies 'policies', and problems you have encountered.
We aren't all Plastic Dolls.

Tuesday, July 27, 2010

No Rest For The Weary

It's true, and I never really understood it until recently.  As my pain has grown increasingly worse, with no real treatment, the insomnia and sleep deprivation have also increased. 
I can remember a time when I would wake up around 8 am, take a 2 hour nap at 1 pm, and then fall asleep at 9 pm.  I could roll around, and get all comfortable in my covers.  Granted I was taking a lot of medication that made me very drowsy, I didn't work, and I wasn't a mother at the time.
Now, I wake up around 7:30 am.   I do not nap, because my son needs me, and I'm afraid if I do, I will have trouble waking up.  I have trouble falling asleep because of the intense cramping in my legs at night... and I have to sleep perfectly still on my back.  Alfred (my significant other) calls it 'my princess in the pea' sleeping.  I want to snuggle with him. I miss snuggling with him.  I am constantly getting up, because I am restless.  I don't fall asleep until sometime past 2 am.  I barely dream anymore. 
The worst is being tired all day.  I could fall asleep at any moment... but at the same time it is so hard to find the time to nap, or the ability.  The pain makes it so hard.

One full day of sleep, just to keep up.  Now that is a good dream.

Monday, July 26, 2010

-Stellate Ganglion Block-

A mouthful, at the least.  I had my third block today... some of you may be wondering what is it and what does it do...
  • What is a stellate ganglion block?
A stellate ganglion block is an injection of local anesthetic in the sympathetic nerve tissue of the neck. These nerves are a part of the sympathetic nervous system. The nerves are located on either side of the voice box, in the neck.
  • What is the purpose of a stellate ganglion block?
A stellate ganglion block blocks the sympathetic nerves that go to the arms, and, to some degree, the sympathetic nerves that go to the face. This may in turn reduce pain, swelling, color and sweating changes in the upper extremity and may improve mobility. It is done as a part of the treatment of Reflex Sympathetic Dystrophy (RSD), Sympathetic Maintained Pain, Complex Regional Pain Syndrome and Herpes Zoster (shingles) involving an arm or the head and face.
How long does the stellate ganglion block take?
The actual injection takes only a few minutes.
 Well, I get mine with just some 'local anesthetic'.  No medication to make me relax... I just lay on the table, head back, and the surgeon feels my neck for the nerve.  Once she think she has it, she sticks the needle in my neck, and aspirates the needle to make sure there is no blood.  If there is, she is in a vein and not the nerve (which is a very bad thing, and if medication were to be injected, could have bad consequences).  
Then they slowly inject medication into my nerve.  Beside the initial injection, my experience is it doesn't hurt.  I get some tightness in my throat (because I am very thin), and then my eye slowly begins to droop.  It stays that way for the majority of the day.

However, the pain in my arm, neck, and jaw is gone from the time of injection until later that evening.  Some people experience longer and different effects.

  • What should I do after the stellate ganglion block?
You should have a ride home. We advise patients to take it easy for a day or so after the procedure. You can perform the activities that you can reasonably tolerate. Some patients may go for immediate physical therapy.
  • Can I go to work to work the next day?
Unless there are complications, you should be able to return to work the next day. The most common thing you may feel is soreness in the neck at the injection site.
  • How long the effect of the medication last?
The local anesthetic wears off in a few hours. However, the blockade of sympathetic nerves may last for many more hours. Usually, the duration of relief gets longer after each injection.
  • How many stellate ganglion blocks do I need to have?
If you respond to the first injection, you will be recommended for repeat injections. Usually, a series of such injections is needed to treat the problem. Some may need only 2 to 4 and some may need more than 10. The response to such injections varies from patient to patient.

Saturday, July 24, 2010

A Moment... and a Pause.

I have friends up this weekend.  I haven't seen them in over 5 years.  My best friend and his girlfriend. 
And the ironic part is- my best friend appears to be suffering from RSD. 
The doctors diagnosed him with neuropathy this past winter.
Neuropathy: A condition which is characterized by a functional disturbance or pathological change in the peripheral nervous system.
But after we discussed both our pains and experiences over the past years, it became apparent to me that it sounded more than just neuropathy to me. Could he possibly be suffer from RSD?

I checked my favorite link for an article that compared the pain of diabetic Neuropathy and RSD-
The neuropathic pain of Diabetic Neuropathy is the sole manifestation of this painful Neuropathy. The painful Neuropathy is accompanied by not only burning pain, but also stabbing and electric shock type of pain because in both diseases (Diabetic Neuropathy and RSD) neuropathic pain causes damage and electric short in the nerve fibers. This is the reason anticonvulsants (especially Tegretol) are so effective in both diseases. Obviously, Tegretol has to be non-generic. Carbamazepine, which is the generic name of Tegretol, does not do any good for either condition. Neurontin is also not as effective as the true, brand-name Tegretol. The neuropathic pain also causes temperature changes in the extremities in both diseases.

2. However, the RSD requires three other conditions to meet the minimum requirement of diagnosis of RSD. In other words, simple neuropathic pain is not enough for the diagnosis of RSD.

3. The other three conditions, other than the neuropathic pain, are:

A. Reflex constriction of the muscles in the extremities in the form of flexor spasm, dystonia, tremor, or weakness of the extremities due to muscle spasm (Orbeli phenomenon).

B. Inflammation in the form of edema, swelling of the extremities, skin rash in the referred pain area away from the nerve damage, and neurodermatitis in the referred pain areas away from the nerve damage.

In addition, in RSD the inflammation can cause trophic changes of the skin and hair, as well as inflammation of pain in the synovia and bursa of the joints. Such changes are usually not seen in simple Diabetic Neuropathy. So, if there are the above mentioned manifestations of inflammation, then were are not dealing with simple Diabetic Neuropathy, but the complication of RSD.

C. The disturbance of the limbic system in RSD is more persistent and more resistant to treatment with anti-depressants.

The symptoms in yellow were ones we shared, and knew we both shared, and could be either diagnoses.  The ones highighted in red, though, were things he discussed with me that made me consider otherwise.  He has only seen a foot specialist, lost his job, and is waiting for SSI to kick in.

Hopefully he can get to see a pain management doctor.  He is only taking anti-seizure medication for the pain, and wearing 'New Balance' shoes, as recommended by his doctors.  His insurance will not approve Lyrica.

For now, I am letting him use my TENs unit... and we are both getting some relief from our pain.  It's nice to catch up with old friends, no matter how you feel.  I feel like a teenager again... and then I fell old... and that's okay too.  I have a smile on my face.

Friday, July 23, 2010


One would assume that if you continued to repeat yourself, finally your point would get across.  I have been repeating myself for 3 weeks now, getting several different doctors' opinions, given them all information regarding my condition, telling them what one another has said verbatim, and I am no closer to where I started from.
Wednesday my general care took me of the only medication I was taking to help to control nerve pain (nortriptyline), because my blood pressure had been  running so low (84/57) he was afraid I might pass out.  Was it a bad call on his part, no, I don't want to pass out, but what am I supposed to do for pain management?

I spent last night,and some of this moring in the ER for the third time.  My pain was so unbearable I could not sit or walk.  My pain management doctor is unavailable until mid August.  My neurologist- late August, and he only treats me for my seizure disorder...  the ER doctor just increased the amount of opiates I take,and told me to see a chiropractor.
I felt defeated, and angry.  It has been like running into a brick wall at full force over and over again.  One doctor tells that the RSD has spread to my leg; another telling me RSD.  I have a surgeon not even look at my leg, and tell me it is RSD.  And finally 2 doctors tell me they can't be certain what is going on without the proper tests or a chiropractor letting them know that everything is in alignment.
If you have this figured out- you are way ahead of me. (Slams head on desk).

I woke up this morning and got on my GP's ass to finally give a referral to a new pain clinic (which I had provided his assistant the phone number with) in hopes of getting some answers, finally.  The receptionist asked me what I wanted her to do- I tried with all my might not to scream at her, with what little sleep I had gotten. 

30 Minutes later, I had an appointment 1 and a half from now.  For now, it is just a waiting game.

-Today's Link-

Wednesday, July 21, 2010

The Depression Factor.

It is a known fact that people with RSD commonly get depression.  I'm really starting to understand why. 
It is not just the pain the is frustrating, or the inability to do things I once could... I'm starting to adapt as the days go by.  I admit, the exhaustion does take it's toll on me.  I love to go for walks, and just walking around the block makes me my body need to crash.
There have also been the days that I haven't been able to go out and help in the yard or around the house.  Some might think, 'yeah, a free pass,' but when you feel like there is no order in your life, the clutter gets to you, and all you want to do is clean... or at least that is how I have felt. And it is not easy to do with a 2 year old in the home.
The days of isolation aren't so bad, now that I have found a few online support groups to talk to.  That is what is great about today's 'Modern Age'.  One can get all the company they need from the comfort of their home.  It also helps when riding in the car kills your bottom, and other parts of your anatomy.
No, I think the one thing that has depressed me the most is the fact that the doctor's don't listen to me, or do not take my pain seriously.  When I pick up my medication, the pharm techs look at me like some kind of drug addict.  It depresses me that I have become the 'fax machine' between four different doctors, because they're too busy on vacation to communicate with one another.
I am depressed because there are days when I feel like aspects of RSD are going to consume my life, because a doctor didn't care.
I have had hypo tension so bad for a month now that my GP is worried I might faint, but he doesn't know what to do, besides take me off one of the meds that my psychologist and neurologist started me on 2 months ago. He didn't consult them, however.  He also doesn't believe that RSD is a type of Chronic Regional Pain Syndrome.
I have been in the ER twice now because of two other doctors' "mistakes".

I am losing faith in the medical community.  I am becoming depressed.

RSD Support Groups-
Reflex Sympathetic Dystrophy Support
Coffee House, Motion Parent's Group, Grown Up's Support Group
and the are a few on Facebook.

Tuesday, July 20, 2010

The Undiscused Female Aspects-

As a woman with RSD,one of the most discussed aspects of the syndrome is how hormones can effect flare ups.  Before my diagnoses, I noticed that around the time of my menstrual cycle, when my hormones would be highest- both during my period and mid-cycle, my pain increased, mostly during my period. 
This has made sense to me, because my epilepsy disorder reacts the same way to the hormonal changes to my body.  My seizure activity increases at the same time.
When I became pregnant in 2007, some of my RSD symptoms lessened, and I also had some flare ups, during the first trimester, and towards the end of the third.  After I gave birth, my pain level was almost unbearable at times.
Since my diagnoses, however, not only has the doctor not addressed this issue, but it took me a month to find other woman suffering from RSD discussing the same  symptoms.
We all were experiencing an increase in flare ups during 'that time of the month',that we could not find any pain relief from.
Yesterday, I did find information that would link these two together-

There is no contraindication for an RSD victim to become pregnant. As a matter of fact, as is the case with some other neurologic illnesses such as multiple sclerosis and epilepsy, pregnancy may be beneficial in the management of the disease.
In conclusion, this would suggest that hormones do play a role in effecting RSD.

Monday, July 19, 2010

A Day at a Time.

Yesterday was a very bad day.
With RSD, one will have good and bad days.

Saturday was great. My pain level was low, and I pushed myself to do as much as I possibly could.  A big mistake.
Yesterday, I was laid up from exhaustion, my leg throbbing and burning.  My arm was in unbearable pain.  As a result, my fight or flight response was in high gear.  My heart felt as if it was going to jump out of my chest, and at times I felt like I couldn't breath.
I still had to be a mom, too.  My significant other works all day on Sundays, so it was my sole duty to take care of our 22 month old.  I brought him out side to play.  I should know by now not to turn your back for one second on your child, but I did to get a start on picking up the yard.  Two seconds later, he was down the driveway and headed for the street. With every bit of strength I had in me, I ran after him, forgetting what pain I was in.
I brought him inside, and broke down.  For a breif moment, I thought to myself, if I had known I was 'going to be this sick, I would not have had a child, it is not fair to him'.  What a terrible thing to feel...  to think.  But there is truth to that.  It isn't fair to him. As much as I love him, what if I wasn't able to catch up to him?  I was sick to my stomach with fear.  The prospects of my future seemed dire.

 But I can not allow thoughts like that consume me. Not now, and not ever.  Any parent with a chronic condition needs to remember this- no your child did not ask for 'this'- but neither than you.  And it does not, and will never change how much you love you child.  Make the best of every day...  and that is what I try to do.  Make the best of each day- and remember to take care of yourself. Because if you are not feeling good, than you can not give your best...
Some people forget that... even me.

But I digress (as always).
A new 'thing' started last night.  I started having a hissing noise in my ears.  Only sometimes.  I looked it up today, and was surprised to find out it was tinnitus.  Can be caused by RSD as shown here.
I have made an appointment with my GP for Weds.  I am looking to change my pain mangement doctor to either a new pain management center, or another RSD specialist. They may be an hour our of my way, but I can't keep up with this.

A RSD support group-
Reflex Sympathetic Dystrophy Support Network

Book of the Day

Sunday, July 18, 2010

Learning to Pace Myself-

When you aren't sick, you can go about your day,and not take two seconds thinking about the things you do.  But as I learned from an early age, when you have any kind of chronic condition, anything throughout the day takes a lot of thought, and the people around you take this for granted. The Spoon Theory is a great read on this.
And once I started feeling the effects of RSD, it only made it more important.  The problem is, when you 'look normal', you have days that you want to 'feel normal'. And that can lead to some serious consequences.
Yesterday was one of those days.  

I was feeling good.  I had some pain, but manageable pain in my back, leg and arm.  My house had acquired an accumulation of filth, because I hadn't been keeping up with the mess, and my partner is usually busy with work.  I had reached my 'dirt tolerance'.  With vacuum and broom in hand, I asked my partner to help me clean the house from top to bottom.  We Spring cleaned the whole house, and I had to micromanage, being the control freak that I am.
Once finished, I sat, and the pain slowly began to grow through out the day.  I began to regret doing some of the work- but at the same time it felt 'emotionally good' to have some senses of order back in my life.
And then the pain was so bad, I just sunk into the lazy boy chair, by leg up.  I woke up in the dead of night, my chest and back in a pain I could not describe.
Today, I am still sore.  I am very tired.  Have a learned my lesson?  For the most part.  But there will still be days where I will need order, and need to feel 'normal'.  

Friday, July 16, 2010

Lack of Resources-

I spent yesterday looking through RSD pages online (my favorite), in hopes of finding a a specialist or center that would be more effective in my treatment.  In one support group, the most common thing I read was- "don't let your doctor just put you on a some opiates, and forget you for a month or two".  That rang too true to my ears.
Since being diagnosed this past Spring, I had only seen my doctor twice, and all he had done is recommend that my GP continue to prescribe me Percocet, and that I have 3 Stellar Ganglion Blocks (my second one was today).
 Essentials of Musculoskeletal Care (3rd Edition)
I still haven't seen him since my RSD, or what I am certain is RSD, spread into my leg.

But I did finally locate a group that promotes RSD research and Legislative Change.  Check it out. I found it helpful.  It has great resources.

After a long night of intense pain, I woke up, and was denied breakfast.  Luckily, the block was scheduled at 11AM, or I might have become ill tempered. My mother and I made our way to the out patient clinic, a 45 minute drive from our home, where sat in a overstuffed plastic chair, covered in heated linen.
About one hour later, I was wheeled into 'surgery', where they proceeded with the Stellar Ganglion Block.  An overly creepy nurse would stroke my head, and tell me I was a 'good patient'.  I better be, to allow a woman who just told me I was crazy to think I had RSD in my leg to shove a needle in the front of my neck, with no medication.
On the Functions of the Sympathetic System of Nerves
But I digress. I had been having chest pain for the past week.  I was reading from the first site, where I get the most consistent information-

The staging of RSD is not as critically done on the basis of dysfunction (stage I) meaning abnormal function of the sympathetic system in the extremity, dystrophy (stage II , meaning trophic and inflammatory changes, skin changes and other signs of inflammation), atrophy (stage III, meaning usually minimal degree of atrophy in the involved muscles), or stage IV (meaning disturbance of the immune system, suicidal attempts, stroke, heart attacks, intractable hypertension and chest pain, and in some cases development of cancer). The prognosis is more related to the temporal development of the above four stages.
 And there was more involving Stage Four-
Stage  IV: Identifies the final stage of  RSD / CRPS manifested by:
1. Failure of the immune system, reduction of helper T-cell lymphocytes and elevation of killer T-cell lymphocytes.  This is in contrast to the opposite, up-regulated function of immune  system in early stages.
2. The hypertension in early stages due to alpha-1 up-regulation reverses to eventual exhaustion and to the common occurrence of orthostatic hypotension in this late stage. Blood pressure changes in this stage are due to autonomic failure. The failure of the sympathetic system exaggerates the response to drugs that lower or raise the blood pressure.
3. Intractable  generalized extremity and visceral edema involving the abdomen, pelvis, lungs, and extremities due to long-standing disturbance of sodium-potassium and calcium magnesium pumps usually left untreated for several years.  The same organs may eventually be subject to multiple abscesses due to failure of immune function.
4. Ulcerative skin lesions.
5. High risks of cancer and suicide.
6. Multiple surgical procedures seem to be precipitating factors for development of stage IV.
This late stage is almost the flip side of earlier stages, and points to exhaustion of sympathetic and immune systems.  Ganglion blocks in this stage are useless and treatment should be aimed at improving the edema and the failing immune system.

These all led me to believe my symptoms were all related to the RSD and much more serious than I thought.  I wanted to talk to my doctor.  But he was not there today, as I was told he would be.  
The Stellar Ganglion Block only increased my suspicions.  So far, 4 hours after the procedure, I have had no chest pains. Is this a coincedence?

And the pain in my leg is significantly less.  Do I wait until August to see my doctor, or do I switch teams, and start the trip almost 2 hours to get what could be better care.  I would have to rely on my family for rides, but it would be for my family's best interest that I recieve better care.  They are the ones that are truly suffering.
The Caregiver's Survival Handbook: How to Care for Your Aging Parent Without Losing Yourself
For me, I am learning to cope.  I have a TENS machine for my really painful days.  My son is content to play in his playpen and watch Sesame Street.  I have a Ketamine cream.  I am thinking about getting a cane so I am not hoping around on one foot.  
But I don't want my coping to interfere with my family's happiness either.  Any sign of stress on them, and I will call the other pain treatment physicality.If Only I'd Had This Caregiving Book

Thursday, July 15, 2010

My story-.

Everyone with RSD has a story.  How the injury happened.  How long they suffered before they were diagnosed.  What limb and body parts have been affect by this chronic condition.
It was 2002, and my best friend was driving on aback road to get gas. It has just started to rain,and *Smith wasn't very experienced at driving.  We went around a sharp corner, and he tap his break.  I saw my life flash before my eyes,and the next thing I knew,we had spun into a telephone pole, on the passengers side.
Luckily I was wearing my seat belt.  But little did I know that the minor whiplash I had encored would change my life forever.
Over the next few months, I suffered shoulder pain, more excruciating than I could possibly describe.  I learn to cope with the pain, by lessening my daily activity, using heat.,and taking ibuprofen on a regular bases.  The doctor I saw for my shoulder told my I might have injured my rotator cuff while sleeping, and sent me to physical therapy.
Four years later, the pain had only intensified. I was living now on medicare, which barely covered any of my health costs.  My only option was to see a chiropractor. She would snap and massage my muscles, which helped me get through my sleepless night. I was on my third bed by now, trying to see if it would help my shoulder.
I told my doctor that I was getting numbness in my arm.  She tested me for Lyme disease and when it came back negative,told me I must have had a vitamin B deficiency, and gave me a shot 'to help'.
Nothing was helping anymore.  And I only help alone. I kept quiet,and learned to cope.
In 2003, I had become engaged to my wonderful partner, Steve*, and we decided to try and conceive. My seizures were pretty much under control, and we wanted to start a family.  In September, Caleb* came into our lives, perfectly healthy.
And several months later, I was ready to figure out once and for all what was causing the pain in my left arm.  I went through a total of 3 primary cares, 3 chiropractors, 2 orthopedic surgeons, 4 neurologists, 3 psychiatrists, and a physiotherapist before I was finally diagnosed with Reflex Sympathetic Dystrophy, 8 years after my initial injury.
A pain management doctor looked at all of my symptoms, all of my tests, and all of my information, and finally took the time to put all of the pieces together. 
It has been very frustrating, not only for me, but my loved ones as well.  But in the end, it has been worth it.  Since the initial accident, my RSD has spread down to my left leg, and into my foot.  I have trouble walking, and writing (I am left handed).  I can only pick up my son for short amounts of time.  My journey is far from over. And so my journal begins.