Saturday, March 31, 2007

Mom, why did this have to happen to me?

I remember the day that the picture below was taken. Each day was the same but on this day I couldn't stand it any more. I couldn't touch her or soothe her. I couldn't do anything that my body was aching to do so there I sat on the edge of the coffee table next to her. I decided to mark that day with a picture in the hope that it would one day show us how far we'd come.

Today a little of every day looks like this, mostly the late evening. You can only distract from the pain for so long before it catches up with her and this is usually late at night when mental stimulation is at its lowest. It is at this time that her unanswerable questions start and the feeling of panic settles into the pit of my stomach.

The pain of RSD


Thursday, March 29, 2007

Winner!!!

Maybe it was the steroids, maybe the fact that I gave the hospital the number of the attorney general and told them to pass it on to the insurance agent that can't read Emily's insurance plan or maybe finally something is actually going my way, whatever it was i'll take it! I can confirm as of 3:00 pm Ms Emily has a place in rehab. We'll be heading to Cooks children's hospital in Fort Worth first thing Monday morning. The time she'll stay is not definate but as long as she progresses she'll stay until somethings been done to help her. I know that this is a huge win for my family but that the true battle is yet to come.

Take a deep breath ...

OK, it's a new day. I have calls into the hospital and the insurance company. I'm taking steriods for my rib so I'm ready to take on the insurance company!! :)

Wednesday, March 28, 2007

Just another day ...

Emily got turned down for the rehab unit today and the pharmacy called, Botox is actually $1,000 a vial not the $500 that I was quoted yesterday. Back to the drawing board ...

The Maze

Over the last 3 weeks Emily's toe nails have changed on her RSD foot (We call it Sarah) Gone are the cute little pink toenails she once had, in there place are thick nails that have a tinge on yellow. Under each nail is a small patch of infection that we are now treating with cream. Her foot has been so painful recently wearing a sock has become a problem.

No word from either the insurance company or the hospital regarding re-hab. I think we are still aiming for Friday but as yet I haven't had confirmation.

This is a little like a maze. In the center is recovery and all around the edge is a mass of winding paths that lead either forward or to a dead end. Which way do you go? Do we push rehab with the potential to make things worse. Do we push rehab and possibly make things better? Do we allow more surgery and potentially cure the hamstring or do we allow it and cause even more problems? We've been told botox "may" help free the top half of Emily's leg. Obviously my insurance company laughed when I presented the prescription so we're faced with purchasing a tiny bottle of botox every few months at $500 a go plus the cost of actually injecting it. We know that the muscle at the top of her leg is acting against the bottom half causing Emily's foot to point forward when she straightens her leg. We know she has foot drop and a tight hamstring.We know that she has major nerve damage in her left leg and that she has a numb area in her groin. We know she's in chronic pain, she's depressed, she rocks, she can't sleep, she has major mood swings and that she's way to young to be going through this. What we don't know is what is the correct path to take, who to trust and what to do next ...

A wise lady told me recently that she could detect that I felt a little overwhelmed" and I must admit that this is correct. I juggle my role as Mom to Emily and Tom, Wife to Pete, Business owner, cook, (Making healthy food for my family is important to me) cleaner, nurse, teacher, financial guru, office manager, physical therapist and friend. I'm also fighting an injury myself after a car accident 2 weeks ago where I got hit going at 35. Apparently, my doctor told me today that I have a rib out of place!! I told him that I didn't have time to have a rib out of place and he laughed. He made me promise not to have any stress, not to lift anything over a pound and to make sure that I don't sleep with my arm over my head. He doesn't realize that I have to lift a wheelchair in and out of my car. I have to lift my child in and out of the tub, I have more stress that can kill a small elephant and peaceful sleep is a thing of the past.

I'm laughing as I type this because the one thing that I know is that things could always be worse. I have 2 beautiful children and a husband who loves me. My sense of humor carries me a long way and when I falter I have friends who help lift me. I have the intoxicating mixture of soft jazz and coffee that is my local Starbucks. I have my dog Harry who never fails to show boundless enthusiasm to anything and everything around him. I'm going to find a way through the maze and I'm going to grow as a person while I'm doing it. Overwhelmed, I laugh in the face of overwhelmed :)

Sunday, March 25, 2007

Emily


Taken just before her surgery in September 2006

My dilemma

Having read the journal entry from Tony's daughter one thing jumps out at me. I've heard from many RSD sufferers that aggressive PT doesn't help. Here I am waiting to get Emily into a rehab center that could potentially irritate her condition.

One of the biggest issues I'm facing right now and what all RSD patients deal with is that we don't get given a clear path. No one around me has the answers that I want. Not one of Emily's doctors can tell me the best treatment, to me it seems to be just a shot in the dark. As Emily's Mum this just isn't good enough. What am I supposed to do to help my child? This is the worst form of torture that you can get. Stand by and watch your child go through hell and the whole time you can't do a thing to help. You can't hold them and tell them everything will be ok. You don't have the answers to the puzzle. Isn't it our job as parents to take away the pain?

My job has become slightly different. I do everything in my power everyday to show Emily the things she CAN do. The stuff I type on here about how I really feel is almost completely undetectable to the human eye unless you look closely at the shadows under my eyes which have been carefully deleted with make up. You would never know. Don't ask me how I feel in front of Emily. All of my friends by now know this. No negative talk in front of my child in fact keep your negative questions to yourself. I have withdrawn from many including family members because the support was either absent or harmful. My job has become one of damage limitations, I try to limit the damage to Emily mentally but training people around her to act the same as they once did. Emily's central nervous system is tricking her body into thinking that a major injury has occured therefore sending the pain sensation to that area even though there is no injury. This is RSD. I try to trick Emily's brain into thinking about something different and therefore diverting those pain messages. The pain is totally there, scalding pain like you've been dunked repeatedly into boiling water (Em's description) but we try all kinds of stuff to make it go away.

Emily has a white room in her head

Guided imagery has been a good tool. When the pain gets to the highest level, a 10 on the pain scale I remove her from wherever she is and take her to my room. I have her close her eyes and I talk softly to her. I take her to a white room in her head. A perfect circle with no windows or doors, In the center of the room is a white bed with crisp white sheets. I tell her that she's laying in this soft crisp bed and that she can feel the sheets softly brushing against her skin. The ceiling is open and she can see the beautiful blue sky, can hear birds or sheep on a distant hill, can smell the ocean or fresh cut grass depending where she wants to go. I can keep her going for hours, we can decorate the room, add whatever we want. We often go to the ocean and hear seaguls, smell the salty air, she can feel the breeze on her face. I do whatever I can to get her mind away from that horrible number 10. Whatever it takes ...

Saturday, March 24, 2007

Ms Jenna

Thank you Tony for making me feel like I'm not fighting this battle alone ...


Get Emily Walking Since I started this site there have been many times that I have been upset with the story's that I have heard, and many have come across my desktop. It is the nature of the Beast (RSD) that most of them are horrific and are the stuff of nightmares. Since my Grandaughter Jenna developed the condition at 9 yrs old we (our family) have gone through everything that this condition can throw at us and it is for this reason that I keep this site in operation and as up to date as possible. In the hope that it might help someone else who is struck down with RSD. The worst times of course are when I hear of young one with the condition and I am sorry to say that Emily falls into that category. Please read her story as told by her Mum. To Emily however I send a ray of hope that is contained in JENNAS Story (Below)to show that this Monster CAN be beaten but that it is a commitment for the whole family to undertake.Tony

What it's like being a parent of a child with RSD/CRPS
Basically HELL


Hi my name is Tracy, my husband is Graham and we have four beautiful daughters, Philippa 14, Laura 12, Jenna 10 and Karla 4. Jenna has RSD, first in her left leg and now in both. She has been suffering since October 2000, when she was seven, years of age. A lot of water, (from crying) has since passed under the bridge.
Looking back now I have great feelings of guilt and sadness that we could have once tried to convince ourselves that Jenna was not really in as much pain as she was saying. We used to watch her every move like a hawk just to catch her out, even when she was asleep. The doctors kept telling us there was nothing that they could find wrong, or it was psychosomatic and in the end that she needed to see a psychiatrist/psychologist. Of course she needed to see someone, our daughter was seven years of age and WANTED TO DIE. What normal healthy child would want that.

Deep down I knew that what Jenna was telling us was true (and I wish now I had listened and tried to understand more), she really was in so much pain. I had to do something to help her. I was not going to wait months for an MRI scan so kept making phone calls to the doctors surgery and very often in tears. They then put their own funds forward for the scan to take place in February 2001. This was only to knock us all down again because it showed nothing really abnormal apart from thin ligaments around her knee area.
We had nowhere else to go. Jenna was now hardly attending school or if she was she was always getting sent home again. Her teacher noticed how depressed she was becoming too. My dad and I were spending most our days on the Internet just typing in "leg pain" until we found a story about a boy in the USA whose mother wrote an article for a magazine about her sons fight with RSD. All the symptoms seemed to fit.. When I told Graham it was such a relief. I felt as if a glimmer of hope was there at the end of the tunnel. I thought great, the doctors will know about this and be able to treat this awful condition.

How wrong could we get. We asked the doctor at our surgery, never heard of it. We asked at our local hospital, they had not heard of it either. Back to the internet again to find out which doctors to go to. We eventually managed to get an appointment at Great Ormond Street Hospital in April 2001. That was six months of agony for Jenna and six months of worry and heartache for us. Looking back now I think I was on the edge of a breakdown myself, but as a parent you cannot give in, you keep going somehow and having Graham and my parents nearby they kept propping me up.

At last April 2001, Jenna was diagnosed. May 2001 Jenna and I spent three weeks at Great Ormond Street Hospital. Jenna had lots and I mean lots of intense physio and hydrotherapy. That was one of the hardest times. To see our daughter going through torture was ripping me apart inside. I wish I could have taken her place. I wanted to let the physios feel the pain like these children were and maybe they would have been a little kinder. Deep down though I thought well it's the hospital, they must know what they are doing. My job was to be there for Jenna after each session. She would cry, and I mean cry and so would I.
After three weeks of Physio Jenna was worse not better. Well that was even harder to cope with. We took Jenna to hospital to get better and she came out worse. Again the guilt that we felt was awful, you put your daughters life in these doctors hands, who are supposed to help them get better, only for them to get worse. I think I must have been going around like a zombie then because all my thoughts were with Jenna and how to help, I had this pit in my stomach all the time. Anyway we continued with the regime of physio through play like instructed and slowly, I mean slowly Jenna seemed to progress.

We now realise that is how it happens. I didn't like it and I still don't now.
In August 2001 after we had been on holiday for two weeks with lots of sunshine and swimming, Jenna announced that she felt like walking again without her crutches. She took her first steps unaided again. Well the joy that we felt is indescribable. That was the beginning of the end of our living nightmare. Well so we thought.

Jenna progressed very, very slowly but she tried so hard. Then the cold weather took hold again and Jenna was having more bad days than good days, but that did not stop Jenna. She carried on, in fact some days pushing herself too much so that she would then "pay for it" later.
By the Summer 2002 Jenna was having more good days than bad days again. Jenna said her pain was there but she could live with it more now. I think really she had lived with her pain for two years nearly she had forgotten what it was like not to be in pain anymore. It was so nice to see her walking, even running sometimes, even if she did "pay for it" later. Jenna was smiling once more and we became more relaxed as a family again. Our family life had been through hell. We went on holiday again in July 2002 and Jenna refused to take her crutches or wheelchair. We had a lovely time. We then came home and started block paving our front drive. Jenna helped.

August 25, 2002. That dreaded day. Jenna was helping Graham in the garden. Ten minutes after helping she came in looking drained. "Mum BOTH my legs hurt, I am going to lie down". Well my heart sank. Not both legs, Jenna only has RSD in one leg. I tried to ignore it as much as possible and Jenna struggled for a couple of days, but then seemed back to normal again. That was until she collided with her sister and dislocated (well that's what the doctor said) her good knee on September 3, 2002. "Rest it for a couple of days" the doctor said. But Jenna was unable to hold her body up with the other leg (her RSD leg) so was in her wheelchair for a couple of days. We then set the physio regime into place determined that the RSD was not going to take over again. It was not working and after two weeks of no improvement, Jenna suddenly told us that the pain had changed, it was now her RSD pain in both legs.

Our lives collapsed once again. Jenna became very angry and depressed yet again. I kept trying to keep her jolly and tell her it was only a minor blip and that we could get through this, but deep down I was crying so much inside. Why did this have to happen all over again.
We are now into February 2003. Jenna is in her wheelchair full-time still. We have a regime of hydrotherapy as often as we can and physio all through the day. She can stand maybe for ten to fifteen seconds at a time. Enough time to be able to shuffle herself to the loo, holding onto the walls, radiator, sink anything, and managing to suffer in silence. She used to cry out loud, but now it's silently.
My heart and I am sure Graham's are breaking. We live each day as it comes. Jenna will survive, we will make sure she does. She is a very tough little girl and determined to beat this nasty disease. We are so proud of her I can't describe it. I only wish it could have been me and not her. When I have told Jenna that, she says "but then who would take care of us".

The last two and a half years of our lives have been the worst I hope ever to encounter. We have felt worry, because we did not know what was wrong, anger because no one was helping, helpless because we did not know what to do, or who to turn to, grief because we were losing our happy little girl and stress because it tears the whole family apart. It's like being on a roller coaster, one minute up and the next down again. I only hope it stops soon.

RSD hurts, it hurts the sufferer, the parents, the siblings, and the grandparents.
I wish no one had to go through this hell.

Postscript.
Since this was written by my Daughter (Such a long time ago now. Where has the time gone)? I am happy to say that through hard work and determination on everyones part, but especially Jenna. She is now once more the happy girl that she once was. The Aqua therapy (especially) has got her back onto her feet and apart from the odd occasion, she can manage the degree of pain that she still has on a daily basis and to see her walk and sometimes run you would be hard pressed to realise that she is still under the shadow of RSD

I pray that Emily will also fight the hard fight and come through smiling.

Friday, March 23, 2007

Update

Emily was very nervous today because she was supposed to be fitted for a brace. This should have involved her foot being cast then the cast was to be sent away and made into a brace. The brace was to work as an ankle since Emily's ankle no longer functions. To wear a sock on Emily's bad foot is quite a challenge. We've been working our way up to a shoe and now she can wear it for 7 minutes. A breeze or the lightest touch sends Emily through the roof so the prospect of a cast made us all very worried.

The outcome of our visit today was upsetting. Debbie, the lady who works with people needing braces and new limbs was wonderful. I could tell just by looking at her that she was upset with what she saw, you just can't hide it when you're a Mom and I see that look all the time. She couldn't have been sweeter. Originally the brace was to be "tiny" and "just in her shoe". Now it's going to be on her whole leg. How can a child who can't tollerate a breeze on her foot wear a huge leg brace? Our options??? The word surgery was mentioned. An uncomfortable tingling when up my spine and my mouth went very dry. I am so afraid of surgery now and if I'm afraid imagine what that word will do to Emily.

Next week, if my insurance allows, Emily will go back into hospital. I'm not sure how long for this time and the thought of my family being seperated again doesn't thrill me but I know that this is my only light at the end of the tunnel. I need a light, just something for me to hang on to. A glimmer of hope that my beautiful daughter will be able to function normally again. I just need to see that smile one more time. In hospital the staff will attempt painful, aggressive physical therapy in the hope that Emily's hamstring will relax enough to get her leg straight. An orthopedic surgeon will decide if he feels that surgery will be necessary, if so he'll go in and trim the hamstring to make it stretch. I'm going to research other methods first because I feel that surgery should always be the last resort. Botox was actually invented for this kind of thing so that may be an option.

Emily and I talked about going back into hospital for a little while then she cried all the way home. I know she's my daughter and I'm meant to feel that she's wonderful but she truly is. What I wouldn't give to take this all away.

A big thank you to my friends who started Emily's fund off and another big thank you to you our friends that wrote such wonderful emails to us. Today was such a hard day then I discovered that I had mail! You made me cry and smile all at the same time. Thank you so much :)

Thursday, March 22, 2007

Medication

When Emily sustained her nerve injury she was put on a medication called Gabapentin. This medicine is supposed to block the burning and shooting pains in her legs. Side effects from this medication includes rocking back and forth, very poor short term memory, visual disturbance and general goofy behaviour. I was given a choice by our first pain doctor, put her on high doses of this medication or have her in constant pain. 3 weeks after surgery Emily came home. 22 hours a day she cried ... she was pure white with black bags under her eyes and she rocked constantly. We couldn't touch her to comfort her, we couldn't do anything! When the medication reached 1500 mg per day combined with vicodin she finally settled into an uncomfortable daily routine. Work began on her foot drop and contracture and slowly her pain level dropped from a level 10 to a 7. She forgot simple things like who visited her, where a book or game came from. "Why do I have those balloons in my room?" "Where did they come from?" I learned quickly not to tell her that friends have bought them when they visited earlier or that I'd bought them 3 days before. She would panic if she couldn't remember so it wasn't worth putting her under that stress. From day 1 I have been uncomfortable with the medication Emily takes. Who knows what the long term effect will be. Faced with Emily being in agony or just forgetful and goofy obviously I made the choice to medicate.

The word goofy sounds weird when you use it to describe medication side effects but really the reality is that Emily has returned to acting as if she's or 5. One minute she can be Christmas morning happy then swing to deeply depressed as she tries to come to terms with her foot that just wont work. From day to day I have no clue how she'll be. I just have to stay consistently positive.

Simple things have been erased from Emily's memory. Multiplication and division have now become a real challenge and Emily knows now that she'll be held back this year at school because the prospect of putting her in 7th grade is a scary one. Kids show no mercy and she'll most likely go up in a special needs class so we've opted to keep her in the enviroment that she knows. Emily is blessed with amazing teachers. The support they have shown to both Emily and myself has been wonderful. They visited her during her bed rest and each day help her to work back into a "normal" routine.

Building Emily a bathroom

It's really hard for Emily to be independent right now because her current bathroom is small and it has no rails for her to hold. Pete and I are swamped with medical bills from the many medical people that we see on a weekly basis so we are unable to give her everything that she needs. This is pretty hard for us to except so we've started a fund to help us provide physical therapy and other things that Emily needs on a daily basis. Any donations that you give no matter how small will be used to improve Emily's daily life. Without proper physical therapy she'll be in her wheelchair forever and her legs will continue to waste away. Our aim is to rebuild Emily's bathroom with wonderful equipment to help Emily become independent and also to increase Emily's physical therapy.

Wednesday, March 21, 2007

Em-pathy

As a positive distraction I invented EM-pathy. This is a company set up by me just for Emily to create t-shirts for kids with disabilities. My daughter has such compassion for others despite her own struggle and I encourage her to see outside her condition. People stare and Emily hates it so she's designed some T-shirts to help prevent the common stare.

"Do you stare because you care"
"I'm just like you just in a chair"

"Keep staring I might do a trick"

"Yes, can I help you with something?"

We have many ideas in the works and the first T-shirt will be ready by Sunday.

I've taught Emily to finger knit so now she can make friendship bracelets and necklaces. My aim is to show Emily all of the things that she CAN do and not what she can't. I modify everything in an attempt to avoid frustration.

My torment

From day 1 getting help for Emily has been frustrating. Getting the hospital to act quickly would mean that they accept responsibility so became impossible and everything is a huge battle. Basically they did as little as possible other than deliver awheelchair to our room a few days before Emily was discharged. I had to stand by and watch my lovely daughter deteriorate before my eyes and I can honestly say that it's the hardest thing that I've ever done. It's against everything that a mother knows, it's the total opposite of what a mother does, I can't hold my child when she cries because i'll hurt her more and I can't take the pain away ...

I hold it in, my thoughts, my feelings, my hurt. I can't show Emily that my heart is broken beyond repair because this is not about me. Instead I do everything in my power to make Emily see positive everyday. I work with the doctors, the physical therapist and the school. I try to make sure that my little girl has every need met physically and mentally.

RSD

RSD = reflex sympathetic dystrophy
CRPS = Complex regional pain syndrome (the new name for RSD)

http://www.rsds.org/index2.html

RSD is a catastrophic disease that has no cure. It causes extreme pain, burning, swelling and skin and nail changes. The chronic pain causes RSD patients to guard the affected limb which in itself causes problems. Emily is unable to use her ankle, her foot just wont pull up. Her entire foot is so painful that a breeze can send it into excruciating spasms therefore I am unable to touch her to give her comfort. Emily has contracture in 2 toes on the left foot which basically means that they are being dragged under her foot and have locked in that position. They are both red and inflamed and extremely painful, this makes weight bearing on this leg extremely difficult. Contracture is also present in her hamstring causing her leg to remain bent.

To learn further about RSD please click the link above.

Emily Today


Emily loves her Brother Tom


Before the surgery 2006


The injury

This is my beautiful daughter Emily. Smart, funny, kind and generous, sweet and adorable. Sunshine flows from her wherever she goes.

On November 8th 2006 during a routine surgery a mistake was made. To some the error seemed small "just a pinched nerve", "just a small amount of nerve damage". The injury to my child was catastrofic.

3 days after her surgery Emily was still unable to move her toes on her left foot.

1 week after her surgery Emily was in agony and the hospital began to scratch their heads.

An MRI confirmed that Emily had nerve damage in both legs which had triggered RSD.

In an instant our lives changed. Gone is my happy child, gone are carefree painless days full of skipping and jumping. Gone are the trips to the park with her brother, the hours of trampolining fun and basketball in the driveway.

Instead my beautiful daughter has pain 24 hours a day. Her gorgeous eyes now have dark black shadows. My heart breaks ...

Our journey begins