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Ketamine Awaits

hospital

Now that the goalposts have moved on the very positive side I am being admitted to hospital for a week from the 17th November.  I have been fighting to try Ketamine infusions for years.  In the other CRPS buddies I have and seeing other people talk on forums these days it seems that Ketamine infusions are used a lot earlier in the piece.  This also boils down to of course having private health insurance too.  For me this is my final option so I have a lot riding on this week in hospital to work.

My last appointment with my specialist a physio from the hospital as well sat in on the appointment . I had been telling her how out of control so many parts of my life feel now.  My weight especially. I am very overweight to the point where I am worried about the other health problems carrying this much weight is causing.  My knees go through stages where they are really swollen and really painful.  Having CRPS all pain that you feel is completely blown out of proportion.  I can drop something on my toe and still be complaining hours later.  My left knee is currently very painful.  Sharp pain and it gives out on me, just like it did when I was a teenager.  I don’t remember doing anything to it but maybe I have damaged it.  Carrying all of this weight puts a heap of pressure on my legs to carry me.  The frustration of half a step forward and 4 steps back becomes more dangerous rather than a frustration when you a very overweight.  So anyway this visit 2 months ago the doctor and the physio decided to have me admitted for a week for 3 days of Ketamine infusions and also try and fix other problems.  I will be having physio each day, have my bowel issues looked at, visits with the psychologist and a psychiatrist and also get some kind of plan to help me lose weight.  I have always found it really tough to lose weight dieting alone.  For me I could be really good with my food but if I was not exercising I would stay the same weight.  As much as I love the house I live in it is on the side of a really steep hill and I just can’t walk out of the front door and go for a bit of a walk and now I don’t drive.  I feel like I have been thrown a lifeline and I want to make the very most of all of the help offered to me over the week.

So that’s my good news! Yay!

Red Tape

frustrated

It has been a long while since I have been here. But my circumstances have changed and to write anything more than a few words is extremely difficult. I find if I have written a lengthy message to someone that right as I am about to send it I drop my phone or tablet and all my hard efforts is wiped. After that, it’s just too hard to start again.

I am trying to be good and use the voice recognition that both of my Samsung phone and tablet have. Again it throws in the odd bizarre word and you still have to go back and put in full stops so the reader has some clue of what you are talking about. I have always been a super fast typer. I think at one point I was around 130 words per minute so it is equally frustrating that when you do want to say something it takes forever. Today I have decided to crank up my Jurassic computer and just start writing a few lines here and there and saving it before I publish. Let me just Kick Start this poor old clunker 

At the beginning of August I had a stumble tripping over some boxes in the garage. As I started to fall I grabbed an over door clothes hanger with my bad hand and my good hand smacked into the rear glass of my parked car. Most of my weight somehow hung on the clothes rail. I was really very surprised that my bad hand really didn’t feel too bad. My right hand was a little sore from hitting the glass of my car but really things could have been a lot worse.

Strangely enough 3 days later my right arm (which was my good arm) came on over a few hours to excruciating pain and my elbow locked in the straight position. Any slight movement became agony and I just couldn’t get comfortable anyway. This extreme pain stayed with me for a number of weeks. I did have a GP come to the house at Day 3 and pronounced that I he believed my crps had spread. The back of my shoulder was sweating profusely and the rest of my arm was purple and freezing cold. He said that I will wait around 3 weeks and see what function I am left with after it settled down. The first month was terrible. Having one hand with full blown crps and no strength and an arm that would not bend meant that I couldn’t do anything. No arms. I couldn’t get to the toilet in time and couldn’t wear anything but 1 dress in which someone would have to thread these broken arms through with fine precision without causing more hell pain. I couldn’t be left alone, I couldn’t even pick up my phone and ring emergency with the arm function that I had. I couldn’t open a door and leave the house if it was on fire. The first day I struggled through on my own but after that, someone had to be here with me.

At this point I rang my care company that shower me 5 days a week begging for extra services, I needed someone to come to shower me on Saturdays and Sundays as hygiene had become a huge issue when no arms work enough complete many many tasks. I was told that I had used the maximum hours that were available to me and the best she could do was to fill out some paperwork and try and get the ball rolling for short/emergency care. Within 2 weeks I was able to have 2 carers come a day but this only last for 2 weeks. The afternoon person would come, change my clothes and make dinner for us. Those 2 weeks we ate like kings it was fantastic. Another company was coming in for 6 weeks to shower me on the weekend. Phone call after phone call desperate to get help quickly and regardless of how bad your situation is…it won’t make the government departments move any faster. I had to apply to disabilities for ongoing extra services and now 13 weeks later my urgent case still sits on the managers desk. They had been waiting to ask the lady that interviewed me some more questions about me and she had been on annual leave for 2 weeks. For the record she has been back for a week and still nothing has happened. That was the end of me. I had kept it together for 12 weeks thanking my lucky stars that it could have been worse. But after this long there is a point when it is just completely infuriating.

Somewhere in the many many people I have spoken to I was in touch with a government department that look after young carers…which means they help my 16 year old son in many different ways. It’s trying to ease the burden on these kids so they can finish school to their highest ability. This beautiful young lady is now making these calls on my behalf and doing her very best to try and get my weekend showers returned for until I go through another round of interviews with another department. The biggest issue seems to be that I am under 65 and this is where urgent emergency help is impossible to access. The biggest problem in my life is that I don’t have a partner. He would have to be in charge of showering me and changing my clothes. Being under 65 with no partner is impossible. It all comes down to funding. The organisation that has been showering me on the weekend charges $98 for 2 hours weekend care. It all comes down to a word called funding. If you are over 65 I think this falls into the federal governments budget and under 65 the states budget. After jumping through hoops for this extra care, it may be granted and it may be well out of what I can afford or I may find it impossible to find one of the care companies that still have enough funding left to take me on. My frustration lies in that if I am struggling with hygiene issues is it actually humane to leave someone in this position for 13 weeks plus. I hope that once this is up and running I still have enough puff left to contact the Health Ombudsmen and relay this ridiculous system. I can’t be the only single parent in this situation.

Anyways we wait…and we wait….

Turning Right out of Struggle Street

1552-0906-1413-0400

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.

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