Rhumetologist

My rhumetologist appointment yesterday went really well, and my consultant was so good! I was saying to the nurse after how brilliant he was in terms of being so thorough, kind, taking time to make sure I was happy with everything and if I had any questions, and she said he is the top consultant!
Anyway, my bloods showed my white blood cells are still really high and my inflammation blood results were off the chart, the number 32 was literally flashing red on the screen which was amusing. He said I must be in agony due to this and it’s no wonder I am. After an examination, which involved my legs being lifted up and shaking uncontrollably, he ordered 18 blood tests which I had there, x rays and an ultrasound. He said there is clearly something going on but he won’t surmise until my results are back. I was happy with this answer, he didn’t try fobbing me off or using medical terms that I needed to look up in the dictionary after!
I have my x rays next week, and it’ll be upto three weeks for the ultrasounds, but as soon as I’ve had them I need to phone the hospital and an appointment will made to see him.
All in all im happy with how the appointment went. O.k. I didn’t get any definite answers, but just knowing that my tissues and muscles are off the chart swollen helps me understand why im in so much pain 24/7. A lot of acceptance is understanding why, so having this understanding helps me accept what’s causing it more. Within four weeks I should have clearer answers but I’m happy to wait that time for them.

I managed to sort the council fiasco yesterday. Apparently the letter was only sent to give me my bidding number and the lady said it says that on the letter. She got rather uppity when I said it didn’t, and that there was a separate letter about home swapping wasn’t sent, they hadn’t sent one. Well I wasn’t having that, I told her to check her computer as there would be copies of the letter and I would hold the line while she did. At first she said they didn’t keep copies.. Which is total rubbish, so again I said check it or put me through to her manager ad I had her name and I’d let him sort out the situation seeing as she was unwilling too. She looked after that, confirmed id had the letter and said they’d made a mistake.
Short story is they’re redoing my whole claim which will take upto 8weeks. Two hours on the phone it took to sort everything but hopefully now it will be and I can get on with finding a suitable property.

It’s boiling hot here in Brizzle, I find the heat helps ease the pain but my bedroom is like a sauna! I ordered a stand up fan and my father brought it round this morning. The relief is unimaginable, from it being so hot it was hard to breathe to now laid here with cool air is brilliant!
I’m happy to spend the morning resting in bed, surfing the net for new ways to help ease muscle swelling as my fan sweeps cool air over me keeping me cool and unsweaty.. Cleopatra may of had people using leaves as fans but having a proper one makes me feel as much as a queen as she did.. ;D

Rising up

I have been away from my blog, social media and everything in my life in the last two weeks. I apologise for the absence, it wasn’t due to me being totally ignorant, I’m only partly that, but because of some personal upsets in my life and a very bad time with my illnesses.

I was extremely down, so unwell, worried over my new symptoms and what they could mean to others and my life,  over thinking, over doing, not sleeping, eating. The inevitable happened, I burned out emotionally , physically and mentally. I won’t lie and say the last two weeks have been easy, because they haven’t. I won’t pretend everything is ok, because they aren’t. But what I can say is, I’m feeling better than I was, I’m very much happier and I’m taking each day as it comes.

My pain clinic appointment on Monday went so well, better than I thought it would. My specialist knows and treats many people with fibromyalgia and it was a huge relief to talk with someone who not only understands the illness but who is willing to help. She changed my Gabapentin for another Neuro/pain drug and a new pain drug to start in two weeks time. This drug she had only given to four people, it’s new a year old and she only gives it in extreme cases. Mine fit the criteria, she confirmed I have severe fibro and had a real understanding of how it affects not only someone’s body, but whole life. I had a ‘pain wash’ come over me while I was awaiting my appointment and they sorted a fan, opened the windows and were so nice! I was totally embarrassed though, I sweat profusely during these episodes and it lasted half an hour, all through my time with the specialist. I think it helped her to decide to give me the painkiller, but wow I wanted to be anywhere but that room, sat in agony, sweating, shaking, retching, and unable to stretch in my wheelchair. I guess it showed how bad it is, I have the pain engulfing episodes many many times everyday and night, but darn this illness and it’s  lack of etiquette, timing and full embarrassment!

I have had real problems with my home move. They put me in the lowest bracket, which means no disabled access, but high rise flats. Not only that but they have put me down as a house exchange.. I only phoned them Tuesday to sort it out and they said they had lost my forms but would sort it. Saturday a letter came outlining the lowest band etc.. To say I am not impressed is an understatement I am livid. I am so tired of having to constantly sort things out that I shouldn’t have to, and which lowers my energy levels, makes me unwell and is a constant cycle. I will phone them later this morning, when I have two hours to take out of my day last week I was on the phone for nearly three hours.. Grrrrr

Good news is I have my rheumatoligist appointment today, late this afternoon. I am really hoping that this will be a huge help in not only diagnosing anything else I may have but be given help to make my symptoms easier. They have my results from my a&e rheumatoid tests, I had to phone the hospital to sort that. But at least it is sorted and I am hopeful that today will be a step in the right direction. 🙂