Arthritis

Psoriatic arthritis in my spine my hands and fingers my left wrist my left collar bone which is badly eroded my left hip two types of psoriasis guttate and plaque which appears on my chest my torso my legs raynauds phenomenon in my hands I do struggle to stay warm I have scoliosis on my spine which basically my spine does not run in is correct shape thus causing a left lumbar muscle imbalance which causes untold lower back pain I have Chiari malformation type1 and syrinxes one at C2 then one at C6/C7 which goes all the way down my thoracic spine to the top of my lumbar spine at C6/C7 I have a bilateral herniated disc which is pressing down on a nerve that runs through my (left hand side ) through my upper back through my left shoulder blade over my left shoulder down my arm all the way down to my fingertips because its bilateral even if use my right arm it can send the most breathtaking horrific stabbing burning nerve pain all the way from my neck to my fingers if the muscles in my neck tighten then releases nerve pain that is like a lightning bolt of nerve pain that shoots through the side of my left neck through the side of left skull behind my left ear through my left temple and behind my left eye I once had 17 of these in one day the first nearly through me off my feet I take meds for the pain but they sometimes work other times they don't nerve can not be totally brought under control I also get nerve just under my skin as the dermatomes get aggravated this is a horrible burning stinging pain where I can't bear to even touch my skin I have cubital tunnel syndrome on my left arm I had a fall from 11feet in May fracturing T12 and my Sacrum I recovered from this only to have someone slam into the back of our car not our fault they claimed liability next day the muscles in my whole back slammed tighter than safe which has increased all of my preexisting conditions and fractured vertebrae this has weakened my hip muscles from the top of my hip bone through my buttocks then September my breathing became laboured so only shallow breaths doing anything even slightly physical was enough to have me gasping for breath I left it which is not normally me as I am proactive about my health middle of November I decided to go and seek medical advice from my doctor who ran blood tests then more blood tests then more blood tests I kid you not my blood pressure was taken which was high in the 180 over 111 mark whilst awaiting my results I decided to have a shower which was tiring enough getting dried wore me out totally I came downstairs just in my underwear to sit on my settee to get my breath back just as I did there was a knock at the door which I answered it was our window cleaner wanting his money which was upstairs I stupidly tried to take them faster than I normally would so by the time I got upstairs I was really gasping for breath I grabbed his money and went back downstairs to my living room to find a £1.00 coin I went back to the front door my head started spinning my legs were giving way then crash I hid the cupboard door under our stairs the bang give me a startle I reached my front door handle and pulled my self up the window cleaner was beside himself I give him his money then went to my living room really really struggling to get my breath a tight band around the middle part of my chest I lay there just calming myself down my wife was out so I phoned 111 to ask for advice answered their questions next thing I am being asked to do is get my wife to come back home as I was going to be Bluelighted by ambulance to hospital paramedics arrived done their tests then 8 hours later after more blood tests and a chest Xray I was allowed to go home next day I got my results my gp ordered an ultrasound on my abdomen to take a look at my liver,gallbladder kidneys and pancreas they all checked out fine my doctor said your triycigcerides were 11.85 which is deemed very high my SLT levels were in the 200s which is extremely extremely high I also had hemolytic anemia which is when your bone marrow is not producing enough normal blood cells that contain oxygen and B vitamins my bone marrow was producing large abnormal blood cells which do not have much oxygen or B vitamins more blood tests were taken even one for lymes as I had been bitten by a tick during the summer this came up negative I was advised to come off one of my meds which may have built up to toxic levels in my liver I then had some repeat blood tests plus ten more the wife was with me this time and was astounded I was asked to monitor my blood pressure for 1 week whilst also starting on blood pressure meds when I had been in the hospital my blood pressure was 202 my blood pressure has been all over this week one of them reading 122/111 while my pulse was 98 I wanted to test a theory by going upstairs a couple of times the theory was is that I was not getting enough oxygen through my system its all up in the air at the moment until I hand in my blood test results I know this site is about depression and anxiety but having all of the above just makes it 10 times worse I also have a formal diagnosis of PTSD I am down to get CBT but guess what this is only part of my story if you want to know moPsoriatic arthritis in my spine my hands and fingers my left wrist my left collar bone which is badly eroded my left hip two types of psoriasis guttate and plaque which appears on my chest my torso my legs raynauds phenomenon in my hands I do struggle to stay warm I have scoliosis on my spine which basically my spine does not run in is correct shape thus causing a left lumbar muscle imbalance which causes untold lower back pain I have Chiari malformation type1 and syrinxes one at C2 then one at C6/C7 which goes all the way down my thoracic spine to the top of my lumbar spine at C6/C7 I have a bilateral herniated disc which is pressing down on a nerve that runs through my (left hand side ) through my upper back through my left shoulder blade over my left shoulder down my arm all the way down to my fingertips because its bilateral even if use my right arm it can send the most breathtaking horrific stabbing burning nerve pain all the way from my neck to my fingers if the muscles in my neck tighten then releases nerve pain that is like a lightning bolt of nerve pain that shoots through the side of my left neck through the side of left skull behind my left ear through my left temple and behind my left eye I once had 17 of these in one day the first nearly through me off my feet I take meds for the pain but they sometimes work other times they don't nerve can not be totally brought under control I also get nerve just under my skin as the dermatomes get aggravated this is a horrible burning stinging pain where I can't bear to even touch my skin I have cubital tunnel syndrome on my left arm I had a fall from 11feet in May fracturing T12 and my Sacrum I recovered from this only to have someone slam into the back of our car not our fault they claimed liability next day the muscles in my whole back slammed tighter than safe which has increased all of my preexisting conditions and fractured vertebrae this has weakened my hip muscles from the top of my hip bone through my buttocks then September my breathing became laboured so only shallow breaths doing anything even slightly physical was enough to have me gasping for breath I left it which is not normally me as I am proactive about my health middle of November I decided to go and seek medical advice from my doctor who ran blood tests then more blood tests then more blood tests I kid you not my blood pressure was taken which was high in the 180 over 111 mark whilst awaiting my results I decided to have a shower which was tiring enough getting dried wore me out totally I came downstairs just in my underwear to sit on my settee to get my breath back just as I did there was a knock at the door which I answered it was our window cleaner wanting his money which was upstair

I’m feeling terribly useless today. It kind of began yesterday when someone made it comment to their friend about my wheelchair and how I can be ambulatory. Then my evil OCD voice started saying to me that I’m not trying hard enough, that I’m a loser and that I have given up on myself. I haven’t given up on myself…why on earth would I bother to get a chair if I’ve given up?
And then this morning we went to visit my Grandfather whose a 100 this year. And while I was in town I thought I’d stop and pay for the new backrest I bought for my chair (because the one I have is terrible) and for fun we stopped at Staples.
I wanted to check out things longer but I couldn’t because I had to walk around and I became dizzy and my pelvis was causing a lot of pain…and I just wanted to cry.
I wanted to cry because outwardly I look so well and inwardly I feel like a train wreck. In five months I’ve had to accept a lot of old realities that I’ve never fully admitted to myself…which is I’m in pain ALL the time and I’m cracking up. It’s messing with me emotionally and now that I have to live with the misunderstanding of what an ambulatory wheelchair user is…from others I feel afraid of people. Most people are nice but I live in a tourist trap and I’m scared of strangers during the summer. I’m afraid to go for coffee, to go to the store…even when now I can!
I bought a big sticker for my new seat saying “Ambulatory Wheelchair Users Exist” and to be honest I’m not sure if I will be that ambulatory in the future. That’s why I began this chapter of my life…to get ahead of the inevitable which will be eventually arthritis in my pelvis. I feel defeated, depressed and physically useless to myself and everyone else.
Of course I’ll keep fighting! But today just made me realise how bad things have gotten for me and I’m just discouraged.
Tomorrow is Sabbath and so I hope to have a good Sabbath and keep focusing on Jesus. His comfort was with me all day today.
Take care my Mighty Friends and stay Mighty! 😌