Turning Right out of Struggle Street

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Sometimes it feels as if you hit rock bottom and finally something falls your way.  My last post Struggle Street https://sharonmunday70.wordpress.com/wp-admin/post.php?post=536&action=edit was a point where I was feeling so much worse than my post which was pretty gloomy. The phone call I received in the very final throws of my Struggle Street post was from the Pain Clinic with a Date with a new doctor. This was the turn about.

As each day drew closer to the appointment I was still waiting for them to cancel on me as they had done before. This time no phone call and the day I met Dr Fabulous as he will now be known as, everything changed. I did decide to bring a friend with me, a person that would be able to hear every word, mediate and jump quickly in to bat for me if I needed it.  I wrote pages found myself practicing in the mirror again all this crazy stuff I would do before I would go and see Dr Moleface (as one of my carers came up with…I love it) Within the first sentence of meeting Dr Fab I felt I let out a very long breath I had been holding. I was also a little scared that my second opinion would be tarnished by the desperate need for his opinion and if he knew the back story. After introducing himself he said that he knew why I was here for a second opinion but that he has not read my file as he wanted to give me his unbiased opinion….(that’s when I let the breath go, sit a little more easily in the chair and waited patiently for him to start the interview) My hand performed perfectly hitting every pointer I was told that I didn’t meet by the Budapest Scale of rating if someone has CRPS.  My hand was freezing cold…slightly purple, shiny (with an awful staph weeping rash all over it) and he even managed to look at both of my arms to see that my injured one – my left arm was in fact hairier which I had never been able to notice.  He was very precise and definitely in charge of the interview but that’s fine by me. He asked specific questions and when he asked “Ok so how is the Sharon these days” I told him that my life had completely changed.  At that point he stopped me and said that he wanted to know exactly what each pain felt like…for example the overpowering burning that screams so loudly that you can barely here people over the ruckus and the attention it wants. The left inner point of my wrist feels as if someone had gotten a hammer and smashed it into tiny pieces.  That the outer point of my wrist felt like a thousand wasps had stung all in one place.  The over all dull throbbing dull ache to your bones. That the inner forearm feels as if someone has a knife and is cutting down longways and other pains as well. He was confused by the reason that I continued to wean down off my opioids every few weeks.   I told him that my last specialist was so dead against me taking the opiods that when I got a sniff of feeling a little better I would start to wean down off the drugs quite quickly. He was very professional he did not shake his head or roll his eyes. At the end of the interview he said that I definitely had CRPS and that he would now be in charge of my treatment. Just like that. It has been many many years since I have felt looked after by anyone especially a male and the feeling was relief. That someone else could steer this bloody ship for a while. That I am just so tired of being the leader and medicating myself however I can with no degree in Health. That someone else was going to take the ball and run with it for a while.

First off he wanted me to start back on Lyrica a low dose and keep this going until my first procedure would happened (which is now next week 4th April) He also wanted me to be taking my slow release oxy codone in a shorter cycle to hopefully keep on top of my pain a little better. Then he described what our plan of attack was.

Next Friday I am having a Bier Block IV Guanethidine. I have been trying to find CRPS sufferers around the world to see if anyone has had this procedure done and have not turned up anyone as yet. It will be one treatment fortnightly for 6 weeks. It will involve a drip in my good hand with sedation in it and drip in my bad hand (Oh GOD) that will be infusing Local Anaesthetic and Guanethidine into my tourniquet arm (Tourniquet oh GOD) I have a feeling this will feel very sore when the drugs wear off.

If this is not successful at helping the pain we would try a Stellate Ganglion which is a nerve block that goes in through your neck. He said with this procedure we would know instantly if it has worked or not.

The third option would be Ketamine infusions.

Life in that hour changed. I had hope. I haven’t had hope in all of this time. I have been wasting time looking at a doctor that just holds her head in her hands and re-reads my file sshhing me if I spoke. This time there was no tears but perhaps that was because I was in shock J

It’s been around 5 weeks since I saw this specialist and my head is completely in another space. One dose of Lyrica completely took all of the burning away from my arm. With Lyrica comes other problems so while I wanted to be celebrating with my pain being so much easier to deal with I was hit with an Ear Infection so savage that I had to go to emergency as my eye had swollen over and lots of fluid was coming out of my ear. Now I have lost the use of my right leg but apparently neither of these problems could be drawn back to the Lyrica. My bad knee (6 surgeries between 1986-1997) was not re-injured but it has swollen up to the point that it is unstable for me to walk without a walking cane. It’s been like this for 12 days. Somedays it is less swollen, some days it doesn’t hurt but it is swollen. It’s difficult to say the least as even with a walking cane I don’t feel very stable as I should because I am using it with my only good hand which isn’t the right hand. It also means that I won’t shower myself on Saturdays or Sundays as it is very painful and dangerous getting in and out of this tiny little area now. I can’t walk and carry anything – this is not convenient being home alone all day…eating meals standing in the kitchen when I am alone. Standing hurts and walking hurts just short bouts on the cane is fine.

But all in all – there is hope.

Aside

RSD 101

RSD 101.

http://missrsd.com/rsd-101/

I have recently stumbled upon Miss RSD and her beautifully written blog.  For some reason I am unable to reblog this particular blog …who know sometimes Word Press just hates me.

This entry RSD 101 I particularly like as I have a lot of trouble trying to explain to one and all this condition (oh by the way RSD and CRPS is the same animal) I found this blog was really well written and made it nice and simple to understand the basics.

Here is a snippet below and please have a look at her writings and her story.

 

“What does that mean?”

Put simply it is a pain problem. There are two basic types of pain: acute and chronic. Acute pain is temporary, though may be quite fierce. Acute pain, when treated, tends to be gone before the 6 month mark. Chronic is persistent pain, that can last for years beyond the inciting injury or illness.

RSD falls under the umbrella of ‘chronic pain.’

“So what’s wrong exactly?”

The sympathetic nervous system is supposed to carry messages to the brain. Lets say you get a paper cut. These sympathetic nerves say, “That caused pain! RED ALERT!” And passes the message up the chain to the brain, the big boss. The brain transmits to the rest of the body that there is a problem, all available rescue teams roll out.

The problem is that in the case of RSD, the brain is working on flawed information. For whatever reason, the sympathetic nerves are stuck in a loop of “RED ALERT!” The brain, trusting those nerves, responds accordingly by making us aware of the problem. Making us feel the pain. And boy do we feel it.

Struggle Street

struggle street

It’s really tough going at the moment, more disappointments and the feeling of being so terribly disconnected from everyone. I feel so very alone. As new symptoms arise I’m so very scared not wanting to put a lot of effort into thinking about it because I feel I could just “Freak Out” in a way that I can’t contain.

It’s always been about stuffing these feelings down low, with the amount of time I have on my hands all day strangely enough I don’t think about this monster much….I just keep stuffing it down down and then one day the lid comes off and I explode in the most inappropriate way.

I have decided that this year my visits with the Psych will be to try and deal with this illness in a different way – meeting it head on. I am absolutely scared shitless but I have to try something different. At this point of my life 2 and a half years in with CRPS I just cannot imagine ever being “OK” with it. I know other sufferers say the first couple of years were the hardest for them – mentally. No part of this is ok, no part of this do I feel in control, managing the day in day out excruciating pain. I do not feel strong or dealing with it well…I feel as if I am drowning…my head making it to the surface for a gasp of air as I continue to flail my arms for help.

The extreme heat is causing more extreme heat in me. My arm is a bonfire with my face not much different….the pain screams all day…in a lot of cases I can’t hear people talking over it…just screams, you can’t focus or concentrate. Taking too many painkillers and I try regularly to try and come down but at this point I can’t manage without them and this causes of course another problem – along with mobility and severe weight issues and why your insides are just not working how they were designed to.

After leaving it for months, I finally wrote my complaint letter to the hospital about the doctor I have been seeing. My last appointment I was assured of another opinion as I have been seeking for years. The doctor I have been seeing – it’s been a nightmare, I don’t know what I did to get on the wrong side of her but every visit is the same hostility, ignorance, aggression. I finally had been lead to believe that I would be have to see her just one more time and then I could see the professor. During the appointment she told me that she didn’t believe that I had CRPS, maybe once but not now (even though the pain gets worse and so do my symptoms – other doctors in this department believe I have CRPS). She believed there was nothing she could do for me as she believed that I had a little bit of arthritis and needed a psychiatric evaluation. After I left the appointment I did my usual ritual bursting into the toilets downstairs and crying my eyes out. My phone rings about 10 minutes after. It is the doctor. She has spoken to the professor and even though the professor has never laid eyes on me she agrees with the female doctor and I would not be getting a second opinion as they have already discussed this (without me being present)

I just cannot fathom how difficult it is for me to see another doctor. One time I had actually been giving a new appointment time with another doctor then someone that I didn’t know rang me back a week later and said that the appointment would not be going ahead.

This morning I was talking with the patient liason officer about my case. It appeared that she could argue my case but in the end it is the professor that makes the final decision and again it’s not looking good. For once I felt that I articulated myself better and not blubbering about it. I thought it was every patients right for a second opinion. If the doctor I have been seeing has been writing in my file things that are just not true…getting much better…very distressed about getting some treatment…how do I get a fair assessment if no one else has actually looked at my arm? I just received a phone call from the pain clinic booking me an appointment next Wednesday with another doctor. I hold my breath…this has happened before.

Thoughts of the future

It’s days like this that I wonder how on earth I am going to be able to go through this shitful illness until old age. Do others feel like that? The pain is so bad that you are willing yourself to pass out and wonder how your body can feel so much pain and be conscious.

We have had weeks of record breaking heat.  The first day over 43 degrees about 3 weeks ago had set the tone.  Before that I didn’t know that I was affected by heat.  I also didn’t realize that the “burning” feeling in my arm could ramp up to feeling that I am sticking my whole arm in a bonfire and leaving it in there.  I wake every morning with the burn and so much heat in my face as well.  I can eventually bring the pain down with a spray bottle of water and a truck load of opiods and 2 hours later I can function a little better.  I became tolerant very quickly to the painkillers and after a while I hit the stage that they no longer work and I can no longer get any relief with them and will not increase my dose any further. I am strict with myself going through a different hell of weaning right down which is a pure hell on its own with fevers and worse body aches than normal.

So even though the burning is terrible I thought today I needed to start weaning.  I tried to have a very quiet day so that I can just take it easy to help get through this horrible phase.

By 2pm I was in hell.  I can’t even begin to explain this amount of hell.  My arm even had its own heat radiating through the awful weeping rash on the whole of my firearm in which I can’t use my tens machine.  The feeling of many tiny broken bones in your hand like someone has smashed your hand with a hammer.  Deep deep unrelenting bone pain.  A hot poker being jammed into a tiny space in your wrist.  Skin being pulled tight over the top of your hand and then someone had a potato peeler and they are peeling the skin off every part of my arm.  I am dazed, confused, scared and upset.  I just want to get away from it and wonder how I can be conscious.  How much the body can bare.

By 5.30 I have had pain killers.  They hardly touch the surface, I am in too much pain for them to work but I am less upset.  I can’t imagine living like this for so many more years. 

It upsets me that I am in my own. No doctor to help and if someone else was in this much pain at least a normal person would be taken to emergency and given something to help. I am treated like a drug addict with a mental problem. 

I am sorry for every horrible thing I ever did to anyone that this would be my punishment.  What I deserved. It’s just too much to bear.

“Everyday may not be good but there is something good in every day”

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The reality of CRPS

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Taken 1 day apart. Of course the top page I am wearing my mask.  My pain is a 7 out of 10 which is a good day for me.  The 2nd photo is taken just after the worst car ride ever. 20 minutes of crying hysterically while my mother drove. Each bump would send the stabbing knife deeper into my arm and letting out full screams at the same time.
This is my reality. It doesn’t get more real than this.

10 Ways To Live Well Even With Chronic Illness

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http://www.mindbodygreen.com/0-11573/10-ways-to-live-well-even-with-chronic-illness.html

Too good not to share.

10 Ways To Live Well, Even With Chronic Illness
BY JOY SELAK NOVEMBER 8, 2013 5:13 AM EST
I became ill in my late 30s, more than 20 years ago. Like many chronically ill patients, I have complex, overlapping diagnoses, all involving pain and fatigue. In the early years, I just searched for what was wrong and what to do about it — hoping I would live long enough to find the answers. Then I spent some years trying to understand my illnesses, settle on treatment and accept the reality of my new life.Finally, I asked the question: could it be possible for me to live well, even if I couldn’t get well? This list is my answer to that question. These guidelines have evolved over the years, and have helped me build a positive life with illness. I would adhere to them even if I weren’t sick, as they have become my personal prescription for healthy living. Here’s a brief explanation of each.
1. Take care of yourself first.Because we’re brought up to bear the children who will start out life completely dependent on us, this is especially hard for women. I’ve learned that if I want a balanced, productive life, I need to offer care, compassion and respect to myself first. This is what allows me to care for others.
2. Never, never, never give up.Getting a diagnosis for a poorly understood chronic illness can take years. Many patients give up and settle for a life of bitterness or magical thinking about miracle cures. Disability and medical insurers play on the sick by denying legitimate claims, in the hopes that weary patients will give up their appeals. My experience has been that a determination to access comprehensive and compassionate care, and to receive the benefits to which I am entitled are causes worth fighting for.
3. Be honest about how you’re feeling.People can’t read my mind. Just because they don’t understand doesn’t mean they don’t care. I find that if I’m honest and straightforward about my condition and my limitations, without whining or complaining, people are generally very willing to be patient and accommodating toward me.
4. Enroll in the School of Whatever Works.In managing my health needs, I’ve utilized and benefited from drug therapies, surgery, dietary changes, physical therapy and exercise coaching, acupuncture, massage therapy, herbal supplements, homeopathy, enforced daily rest and more. As soon as I think I have it all figured out, my symptoms change and I have to enroll all over again in the School of Whatever Works.
5. Make friends with fatigue.I rest in bed for several hours every day. This proactive habit prevents the complete collapse that comes from wearing myself out. Instead of fighting the fatigue, I’ve learned to embrace and cherish my rest period, including that little snack and drink I loved in kindergarten.
6. Live as a child.Kids tell the truth, ask for help when they need it, freely give and receive hugs, laugh easily, fall asleep when they’re tired and cry when it hurts. I try to follow their excellent example.
7. Step out of the box.To live fully, I occasionally need to push the limits and step out of my little sick box. Whether it is through travel, volunteering, or learning something brand new, stepping out helps me feel more fully alive and learn new things about myself.
8. Search for silver linings.I believe all of life’s experiences contain value, even the ones that seem bad. Being sick has taught me to be a more kind and sympathetic person, to set reasonable boundaries, to release negative people from my life and to appreciate the beauty in the present moment. These are not small rewards for searching for those silver linings.
9. Find a way to share your gifts.I’ve come to believe that the reason we’re here on Earth is to discover, develop and give our gifts. Illness did not exempt me from that purpose and obligation. I could no longer give the gifts I had been trained to give, but I could, and did, learn some new ones.
10. Be still.I am still for a time each day because I must be.I’ve grown to love the quiet and peace that abides in the stillness. Learning to be still has improved my health, enriched my intellect and opened a spiritual center that used to be swamped by the noise of living.
This may be my very favorite of the top 10.

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