Celebrating The "Women Of HOPE" - Journey # 6

~~Becca's Story~~

March 12, 2007, I will never forget that day as long as I live!!


I dropped my 4-year-old son off at childcare early in the morning, as I had to go to work. It was a home day care so she was flexible with hours. I told her that her parkway (edge of her yard at the end of her cul-de-sac) was icy and she needed to get it sanded before other kids arrived.
I left and was walking to my car carefully, but not carefully enough. I slipped and fell. Boy did I. I yelled and yelled, but no answer. It was a mess. I had to drive 1 mile to work with my left foot so I could get help because yelling did no good where I fell.


I thought I had a severe sprain since I had done that before. I went to get out of my car, and realized it wasn't just sprained. I sat for about 10 minutes until my co-worker arrived and helped me call my boss to take me to the Emergency Room. After a few hours there, they sent me to my surgeon, a great man who said we were going to fix this!


I had surgery the same day. During the surgery, I went into shock. They thought I was gonna die right on the table. Well, I didn't and when I woke up, my doc told me that he had to put a 5 inch plate with 5 screws that go from the outside of my leg towards the inside and there are also 2 more screws that go from front to back. My fibular head has 2 screws that go from the inside of my ankle up towards my leg. My bones split so I have a piece of Kevlar wrapped around the 2 bones kinda like a rubber band holding the bones in the correct position.



I was non-weight bearing for 10 weeks with an air cast boot. I was finally allowed to walk a little on it in the cast boot for another 5 weeks. I had the boot taken off the end of May 2007. By August, my foot started to have these weird spasms. My physical therapist thought I had RSD, so she sent me back to my surgeon. He sent me to a doctor who does nerve tests. She said I didn't have RSD just a little dystonia, it would go away with time. I went back to PT and fought hard for months to get back to "normal". I was discharged the end of March 2008.


In July of 2008, I went back to the Dr. who said I didn't have RSD because I was having more problems. She then decided I did in fact have RSD. She gave me some meds and sent me on my way. I had been chatting with a member at the YMCA where I worked who has RSD real bad. She gave me the name of a Dr. that she sees, but he wasn't taking new patients. I looked on the internet at a few hospitals near me and found a great Dr. who specializes in pain and has a clinical interest in RSD.


I had 2 nerve blocks, the first lasted 1 day, well almost… the 2nd put me in so much pain that he did a lidocaine IV instead of doing the 3rd nerve block. I played ping pong in his office seeing different docs. I changed neurologists and now Feb 2009, I am struggling to live. I have tried a number of meds, some worked a little, most don't. It's hard because I am on state insurance. They don't like to pay for a lot of meds, so I have to fight to get most of them. Some they still won't pay for. They won't pay for a lot of treatments either. I can't have physical therapy even though all the research says PT is the most beneficial treatment for RSD. I had a shoulder problem in high school and prior to that surgery, my doc (now retired) tried every med available to kill the pain. The only thing that worked was Percocet. I can't have Percocet even though that is one of the every few pain drugs that work for me. I can't take the generic of this med due to an allergy, but Maine doesn't care.


Right now (Feb 2009) I am taking Lyrica, Mirapex (it knocks out a weird side effect I get with Lyrica) and Zoloft (I have Premenstrual Dysphoric Disorder)


I have had to fight for everything since I broke my leg. I can't sue the woman whose house I fell at, because in the great state of Maine, slip and fall cases are difficult at best to win. She had no homeowners insurance (it had lapsed when her husband went out of work) so I couldn't even file a claim with her insurance. Mainecare (Medicaid) pays my medical bills…well some of them.


My RSD has officially spread to my left leg so both legs are affected from my hips down. It is getting harder and harder to walk, but I am not letting RSD get me. I have HOPE that someday there will be a cure.

Thank you for listening to my story.


~~Becca~~

Celebrating The "Women Of HOPE" - Journey # 4

~~Beckii's Journey~~

My name is Beckii and I am 15 and I live in central England and this is my story....


I have CRPS/RSD, Chronic Pain Syndrome and Irritable Bowel Syndrome (IBS).


I first fell ill in October 2006, at first we were sure that I had appendicitis, but when my temperature fell back to normal whilst in hospital and the lack of vomiting the doctors were completely confused about what it was. I was in hospital for two weeks, and it wasn't appendicitis.

One of the head consultants said it was a nasty muscle attacking virus that would last 6-8 weeks. We believed him and went away, in the follow up appointments I still wasn't any better, he then referred me to the pain management team at our local hospital (who are very good, the consultant and chronic pain nurse I'm under there are both Christians which is yay for me :D ) They diagnosed me with Chronic Pain Syndrome, (a rather nondescript title which just means that I'm in pain for a long time).

Then I plodded along for a while taking my meds and doing part time school, then Easter 2007 I got crushed in a door frame at school. This was when the CRPS occurred. It first appeared in my right arm, it was diagnosed within 2 weeks, which was amazing. ( It just so happened that the 5th time we went to accident and emergency the doctor decided to send me to the physical therapy department. The PT we saw took one look at my arm and diagnosed it. Looking at it really this was a minor miracle that everything got moving so quickly!)

Again I plodded along taking meds having physiotherapy (at this point my arm was purple nearly all the time, frozen across my body and my trigger finger twitched constantly)

Then in June 2007 I got a night cramp in my left leg. This also developed into CRPS. We took the same course of action only this time we went straight to the physiotherapist, we upped the therapy.

In august 2007 I went to my church's family camp, after much prayer I was completely healed and off of my meds within the week. But this is not where my story ends.

In September 2007 I scolded my hand whilst making a hot drink. I took Co-codamol for the pain, the A&E nurse said it was actually really bad (2nd degree covering about 1/4 of my left hand) and suggested the co-codamol.

By October this had sparked off pain and nausea in my stomach. The docs said this was the chronic pain syndrome back again (we later (august 2008) found out that it was also IBS) so we started back up on the meds, but not with opioid's as that's what caused it.

Again I plodded along until may 2008 when I got night cramp in both of my legs, the CRPS developed in my left leg again. To start with it was only my lower leg but now it's the whole thing. I use a stick to walk and I cannot walk very far most days, after about 50 yards I want to stop, after about 200 yards I need to stop and sit down to recover, if I don't it takes me hours to, after about 500 yards I'm on the verge of collapsing and it can take me days to recover.

I don't live as a normal teen girl would, I've been forced to grow up. But I've also been forced to fully rely on God - I mean even without pain walking on God's steam can't be a bad thing right?

Last weekend I went away with one of the local Christian youth groups, and I can say a good time was had by all. Though if I weren't actually counting on God to make my legs move properly and keep me smiling even through the agony I wouldn't have coped.

It sounds very odd to say this but If I could of course I would get rid of the pain, but If I were given the option of not having it at all, I would still take it. I've learn so many lessons through it the experience has been invaluable.

~~Beckii~~

Xx

Celebrating The "Women Of HOPE" - Journey # 3

~~Mar's Story~~

April 23, 2005

I was doing my job, my job that I loved so much. I was a nurse, and I worked on the med-surge floor at Medina Memorial Hospital. One of my CNAs asked me if I would please help her pull up a patient in bed. I said yes, that I would help her. When I did that, my left leg stayed attached to the floor. It did not move with me. As I did that, the top part of my leg (the thigh) went to the right. The bottom part of my leg (the calf) went to the left...instant pain, dropped to the floor. That night was so very busy. I got an icepack and used an ace bandage to keep it in one place. We had 30 patients and there were just two of us on the floor. No time for me to stop doing what I loved to do. When I got done with my 12 hours shift....... I thought my leg was going to fall off. I called my PCP when I got home that am, and went right over there to see him. He sent me for x-rays. Then he told me that I needed to go to an Orthopedic Surgeon.

May 9, 2005

I went to the surgeon and he said that I tore my Medial Meniscus and that I broke a huge piece of the end of my Patella.

June 22, 2005

I had Arthroscopic Surgery to fix what I had done to my knee....the recovery from this was pretty long, and a lot of physical therapy!!

December 26, 2006

The day after Christmas... .I went out to turn the outside lights on in the garage. On my way there....... .I fell on the patio. The cement patio. I tried really hard to guard my knee. That did not work out so well for me! My knee crashed on the patio. I was on the ground, in the snow...it was snowing. I had my cell phone with me THANK GOD! I called in the house, and Dylan was the only one that was here with me. He was playing with his new toys. I said to him, Dyl mommy fell and I am out on the patio and I cannot get up! He said mommy, I am playing with my new toys! hahahah I said Dyl I need you to call Gam and Pap (my parents). He called them and told them what had happened, but he forgot to tell them that I was still on the ground! My poor son, he was pacing waiting for my parents! They came and helped me in the house. I looked at my knee....it was an instant bruise a really bad one, the whole knee.

I immediately called my surgeon; He said to ice it, and that he would see me in the morning. I went, and he did an MRI...he said that it showed nothing. Well, months went by, and I kept having so many problems with walking, and the pain. I went back to him in July and said that something was really wrong in there. He then did another MRI and said that I needed to have another surgery that I had broke a HUGE piece of the Patella on the Medial side. He then said that he was going to do a surgery that was called Drilling and Coning....which meant that he was going to drill many tiny holes in my knee and hope that the cartilage would grow back.

August 1, 2006

The day that my WHOLE life changed....I woke from the surgery screaming, and crying. My knee was burning SO bad! He was the first face that I saw when I woke. He told the nurse to give me some more medication, and the nurse said that she just had given me some. He told her that he did not care, that she needed to give me some more....I was still screaming, that burning pain, that pins and needles pain....did not stop.......the recovery from this surgery was HORRIBLE! I had to do physical therapy, and I could not do it.....I could barley walk, and that burning pain...still there. After a while he said that he would do a cortisone shot. When he did that, it was soo bad, hurt so bad! The pain was intensified from that shot.

October 19, 2007

A year and two months later....... ..the surgeon finally said that he thought that there was something more going on in the knee...he sent me to about five other doctors to confirm what he was thinking that I had....they all agreed with what he was saying....He thought that I had CRPS.

He sent me to a Pain Management doctor....I was evaluated by him......at first he said that he did not think that I had it. I went back to him about two weeks later...he then told me that I had CRPS.....

After that we tried two Sympathetic nerve blocks. The first one lasted until I got out to the truck to go home. The second one lasted about one week. We have played around with my medication this whole time....nothing seems to be working out so well for me. He often talked about the SCS....I had a lot of thinking to do about that! I talked it over with my husband, and with my parents. My husband said that he thought anything at this point was worth a try. My parents said the same thing. I still was not convinced that I should do it....I did not know what to do. The flares for me were so bad, the discoloration, the burning, stabbing shooting pain, the hypersensitivity. I could not even wear pants, in the winter I was wearing shorts when I had to go out.

One night I had a horrible flare, it was the worst ever. I called my mom, and her and my dad came to my house. They were begging me to please try the SCS...there were a lot of emotions at that very minute. At that point, I decided that I had to try the SCS. I tried the trial surgery first. As soon as the SCS was turned on.....oh man, I felt relief!!! It was sooo nice! I had the trial in for four days....I did not want it to come out! I wanted to run away with it in!!

July 8, 2008

The date that my permanent SCS was put in....this surgery was different. I was awake for most of the surgery so that I could tell them when I felt it and things. Then I went to sleep while they put the battery in.
When I awoke, the pain was not so bad, but the battery site was BURNING!! They kept telling me that it would go away. Six months later they were still telling me that the burning pain would go away! I think that the SCS helped with my CRPS pain for about a month. Then things changed....and changed for the worse. I have had eight re-programming done....still with little to none difference.. ..

February 2009

At this point......the SCS is doing nothing for me. I tried to do what they call the "holiday". That is when you turn your SCS off for a week and see what happens and they say that it might reset the brain. Well, while it was off, the only things that I noticed about it not being on was that my legs and feet were very purple and red...also, I noticed that the spasms that I have in my calves were worse! The burning, stabbing shooting pain that I have always had......was no different with the SCS on or off.... The battery site......still BURNS like crazy.

This last time that I saw my PM he gave me some Lidoderm patches for that site. They seem to be helping some what...but the burning is still there... He also increased my Kadian (morphine) too. He said that maybe that would help through out the day. So far, I do not notice a difference at all.

Through this whole thing, I am trying to stay positive. My children.... .oh dear, I feel so bad for them. I was the active, sports mom. And now, I am not! It is hard for them to understand
why.......they ask, and I have to tell them that I cannot do something and it breaks my heart! Work........ oh, how much I miss working. I know that at this point, there is no way that I can go to work.

Depression.. .......sometimes , it is really bad. I feel sorry for myself, and I know that I can not do that. Everyone has bad days right? Well, my bad days seem to be more than that good days!

My marriage.... .I am not even sure that it can survive this. So many things have changed.... I will say, that I have met, and found some wonderful people that also have CRPS. They understand what I am going through every day!

I do have HOPE, and I will always have HOPE! It is a struggle everyday....
......but, I will make it!!

~~Marlene~ ~