Hi everyone
Happy new year! This year so far has been a bit of a busy one for me, hence my first post of the month being on the 18th of January!
Before I start, I would just like to acknowledge the late Alice Pyne. It was so sad to hear that she had passed last weekend. She was an inspiration to so many people and she showed that just because you have been diagnosed with an illness that you will have for the rest of your life, doesn't mean that you have to dwell on it. She also showed the power of using your illness to help others, which is what I am trying to do. RIP Alice.
So since my last post, I have reduced my steroids down to 2.5mg (I'm nearly off them!). Although, I have started to get pain back in all of the places I did before, so I am wondering if I will need to go back up to 5mg :( I am at the Rheumatoid Arthritis Doctor (Dr Wood) next week so hopefully she will advise me with what to do next. I've had to start wearing my wrist support occasionally again, I am struggling to get my arm above my head because of the pain in my collar bone, my feet are quite sore when I walk and most annoyingly, my fingers on my right hand are swollen and painful again. It feels like I am taking a step back, but I hope that Dr Wood will be able help me.
My appointment next week is for my 3 month check up from my first appointment... In August!! I was diagnosed at my appointment in August, then Dr Wood gave me a steroid injection that was to last three months and then she would see me again once I had started on my medication. Well, I finally received an appointment in the post in December for January 11th at 12pm, in Kendal! I had to ring up and rearrange for an appointment in Ulverston, otherwise I would have had to take pretty much the whole day off. The problems I have had with getting appointments has been ridiculous!
On a more positive note, I went to my monthly clinic with the Rheumatologist nurse this week. My blood test results showed that during the week that I was ill in December, my inflammation count shot straight back up to when I was first diagnosed with RA, so it was four times higher than the week before. Luckily my next blood test showed that it started to go back down again after that, so it was just down to me being ill. But other than that, my blood results showed promising signs, which means that I have now been passed to my GP and no longer need to go to the monthly clinic. It also means that I only have to get my blood tested once a month now rather than every two weeks which is also great news!
I am still on 6 pills of Methotrexate once a week, which I am pleased to say still aren't causing me too much trouble. I do tend to feel a bit dizzy and sometimes a bit sick on a Wednesday, but nothing too horrendous!
As expected, I haven't had much spare time since getting the keys to my house so once again, apologies for the delay in my latest blog post. Jamie and I have spent every spare minute we have working on our house! We went straight round last Friday and started stripping wallpaper, only to find what was to become our worst enemy lurking underneath... Wood chip!
For those of you who are lucky enough to not have come across wood chip paper, it's basically a cheap paper with small chips of wood within it which gives the effect of a textured wall finish. Apparently it was really fashionable in the 1970s?! Then add several layers of paint on top and you have the most difficult thing to remove from walls...Ever! Best of all, it is on every single wall!! So we have spent the past week steaming and scraping the stuff off the walls, with the help of our families. We are making progress with only a few walls left to do, but i feel like I have a scraper permanently attached to my hand!
In other news, I had my monthly check up with the Rheumatologist nurse this week. My blood test results showed that I was doing well and my inflammation was coming down, which is great. Its a relief to know that the MTX is working. It also showed that my white blood cell count is still high, so I'm constantly fighting some sort of infection, although it can't be that bad as I haven't felt particularly ill. I have been quite lucky so far with not picking up any bugs or viruses, despite having my immune system dampened by medication. However this week I was finally beaten and I now have a sore throat, sore head and annoying cough. I'm feeling pretty lousy and working on the house every spare minute probably isn't helping but I'm not one to mope in bed.
It was also blood test wednesday this week. I managed to get my best place in the queue ever, Patient 5! It was pretty lucky though to be honest because I felt like I was going to pass out if I had to wait much longer. I think it was the mix of feeling unwell and the warm hospital, but I was glad to hear my name being called. I managed to get a right whopper of a bruise this time though, I think its time to start switching arms!
I'm out for tea with the girls tomorrow for a catch up before Christmas and all my other time will either be spent working on the house or recouperating. Hope you all have a lovely weekend!
Hi Everyone
So after my confusion yesterday about my prescription for MTX, I emailed my GP and requested more MTX and folic acid urgently as I needed to take the MTX this morning. I received a reply saying that it would be ready after 5.30pm, so it was going to be a rush to get the prescription and get to a pharmacy before they shut at 6, but at least I would have my meds on time.
I managed to get to the pharmacy at 5:45, but when I got there the pharmacist told me that my GP had only prescribed 3 pills a week for the next two weeks instead of a 6 a week for a month. They rang my GP (not my usual GP who is on holiday) and he said that he had on my notes that I was to start on 3 a week for two weeks and then progress to 6 two weeks later, which was right, a month ago! My GP was on his way out to a house visit so he said to give me what he has prescribed for now and ring him again in the morning. So basically there was a mis-communication between the hospital and my GP surgery about what stage I was at.
This morning I decided to go with my gut and take all 6 pills, because I knew I was right and I wouldn't be able to speak to my GP before I needed to take them. I rang my GP and asked for him to ring me back, and then headed out to the path lab for my second blood test.
My second visit was the complete polar opposite to my first in every way. Firstly I was the only one there until about 8.55am, secondly I only had to wait for about 15 minutes once I was in the waiting room and thirdly it hurt way more than the first time! I dont usually find blood tests painful, but when I looked at my arm afterwards, I have a large scratch up my arm where the nurse had inserted the needle. Even so I was pretty happy to be in and out much quicker this week.
When I arrived and collected my queue card, I was "patient 8" this week, despite being the only one there! Apparently people go the night before and get a card to save queueing in the morning. Only patient 1 & 2 turned up while I was there though, so I got seen to third. Much better than 14th last time!
My GP then rang me back, and after I explained the situation he said he would do a new prescription for a months worth of MTX, with 6 pills a week. He was actually very nice and said that he didn't want to make a rash decision late at night with such strong drugs, which I completely understand. So it is all sorted now hopefully!
In terms of the MTX side effects, once again my head feels a bit fuzzy and I feel exhausted, but nothing too horrible.
After a stressful few days I'm looking forward to a hot bath and early night tonight!
On a more positive note, I went to my monthly clinic with the Rheumatologist nurse this week. My blood test results showed that during the week that I was ill in December, my inflammation count shot straight back up to when I was first diagnosed with RA, so it was four times higher than the week before. Luckily my next blood test showed that it started to go back down again after that, so it was just down to me being ill. But other than that, my blood results showed promising signs, which means that I have now been passed to my GP and no longer need to go to the monthly clinic. It also means that I only have to get my blood tested once a month now rather than every two weeks which is also great news!
