12:28

One of those days

It's been one of those days. I knew it was going to be one of those days as soon as I got up this morning. It was another struggle getting up this morning, with very limited movement in my lower back. I slept with a pillow stuffed under my hips to try and get some comfort which helped a little. It's my plan to invest in one of those long body pillows, see if that will help. It was also very cold this morning. 1°C according to my car thermometer this morning. My joints don't like the cold and I was significantly stiffer than usual this morning, waddling my way to the bus this morning.

I commute to work on the bus each morning where I get off at the train station in Dundee. It's about a 10 minute to my office on the far end of campus. Occasionally (and as I get stiffer, it's becoming more often), I get the 73 bus along half way along Perth Road which reduces the 10 minute walk to a 2 minute one and a 2 minute bus trip. This morning the bus was due in 3 minutes and I was in no mood for walking. I could practically see the bus coming when my guts decided to play up.

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12:25

Delivery!

I'm sorry, I thought I had posted this post, but evidently I only saved it rather than published it!

My drugs were delivered on Friday! The kind people from BUPA text me the night before saying my delivery was due by courier sometime between 8am and 10am. They were delivered fairly quickly not long after 8am. These need to be signed for and placed straight in the fridge on receipt.

I was delivered my first three lots. My first three doses are loading doses, where I'll receive double the amount of medication every two weeks (x2 200mg syringes). Each package (image on left) contains 2 syringes. After the loading doses, I'll have x1 syringe every two weeks, so each package will be a monthly supply. I received the timetable for delivery until the middle of 2016 in which my drugs will be delivered monthly on a Tuesday. I was also provided with a yellow sharps container for disposing of the used needles. BUPA will also arrange a date to collect the used needles when full, which is handy. I didn't fancy taking a trip to the tip and handing the gentleman a container of needles to dispose of!

It was a simple thing, but I can't express the joy of receiving them. It made it feel so much more real that something was finally being done, especially after the brutal week I've been having with pain. Now I just have to keep them in the fridge (and resist the urge to open them or just give it a go myself) until Monday when the BUPA nurse comes to visit and I get my first injections :)

Robyn xx
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16:46

Endless Struggles

It's beginning to feel like a constant struggle at the moment. I met with the rheumatology nurse last week to start treatment. We went through all the forms and such. I was contacted by BUPA to arrange a time to deliver the drugs and have a nurse come for my first dose. This feels like the longest week of my life. My drugs are due to be delivered on Friday (27.03.15) and my first loading dose is happening on Monday (30.03.15). This feels like the longest week of my life.

My steroids have now entirely worn off. All I have right now is Codiene to try and dull the pain, and it's really not working. I do have tramadol but the side effects are too much to use it consistently. My biggest issue is my back pain. I've had constant pain around the sacroilliac joints aswell as an increasing stiffness in my neck and upper back, severely limiting my flexibility and general movement. Emotionally, I'm at a very low point...


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16:40

Small Bowel MRI



Continuing with my diagnosis, last Monday I had to go back to the hospital for a small bowel MRI.
MRI is short for “Magnetic Resonance Imaging”. It utilises strong magnetic fields and radio waves to generate images of the body. It has the benefit over traditional x-rays and CT scans that it doesn’t expose you to radiation. There are advantages and disadvantages of each technique. I personally am not worried about getting x-rays. I’d much rather have a little radiation than continue to suffer, though some people are concerned about the effects of radiation, so MRI is a valid alternative. Pretty sure I’m not going to get superpowers no matter how many x-rays I have, boo.

The purpose of MRI was to investigate my small bowel for signs of inflammatory bowel disease – common types of IBD being Crohn’s and Ulcerative Collitis. My current diagnosis is ‘active IBD’. My abdomen is often quite swollen, noticeably bigger at some points and tender to touch pretty. I more often than not have pain in my abdomen after eating manifesting as horrible gut wrenching cramps that leave me with little more to do than curl up in a position that’s remotely comfy and feel sorry for myself while waiting for them to pass. It can vary in its onset. It can occur 5 minutes after eating or it can appear half an hour after eating. This also varies with what and how much I eat. Sometimes I’m okay, sometimes I think those chips will be the end of me. With this often comes horrible diarrhoea (It’s hard treading fine line between being informative and being gross, sometimes you just have to be honest).

From a previous colonoscopy – which I thankfully had prior to starting writing the blog, as I’m pretty sure you wouldn’t want a play by play of that! – it showed my large bowel to be normal, with no obvious ulcers or areas of concern. Biopsies were taken but were inconclusive. So the next step was to see if my small bowel was inflamed which unfortunately can’t be reached by the camera.

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13:28

Pain

A rather dramatic title, I'll admit, but that is what I'm going to talk to you about today. You can find out more about the specific conditions that I'm suffering from on my 'About Me' page. Here I'm going to try to explain to you how that main physically manifests on a daily basis. 

As an autoimmune disease, my body is mistakenly attacking normal healthy cells as a result of a certain stimulus (in my case, not quite sure what that stimulus is). In particular, my body is attacking the cells lining my joints, commonly referred to as rheumatoid arthritis (not to be confused with osteoarthritis which is considered to arise from 'general wear and tear', again, I'll refer you to my About Me page). This is causing inflammation of the joints. This inflammation can sometimes be evident in the physical swelling of the joint or it can be unnoticable. Fellow sufferers are probably all too familiar with this. If people can't see the source of the pain, they are less likely to believe its there and this can be infuriating when you're in agony, but let's save that for some other posts.

 I've attempted to illustrate (poorly in photoshop, I'm so sorry!) the areas of pain in the diagrams below (that I borrowed from work - these are forms typically used in skeletal identification reports and disaster victim identification reports for detailing the skeletal elements discovered or any particular distinct marks/scars/other identifying features on the body). In the skeletal image, I've attempted to illustrate the joints that are swollen and the areas of pain on the complete body image - as you can see the pain from one joint can manifest over a significant area.


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14:33

Welcome!

Welcome post! I've finally decided to write myself a blog! Having pondered the idea for many months now, I've decided to start a blog and hopefully share with you all my experiences. The inspiration for this blog came as I have recently (well, over the course of the last year and a half) been diagnosed with various forms of chronic arthritis with complications. In hindsight, I should have started a blog much earlier and detailed all my symptoms and woes. Though that'd really be you reading me complaining all the time, so it's probably better this way! I'm now about to embark on treatment for my arthritis. I had never heard of the medication I'm being prescribed and thought that writing a blog sharing my pains and my treatment would be a help to other people who are being diagnosed with the same problems and embarking on the same road as me.

I do hope you'll follow my blog. Please bare with me, as I've never done this before. I'm still in the process of making my blog pretty, adding all my pages, trying to wrangle some followers and all that jazz. Hopefully in the coming few months this place will get a bit busier and there'll be more for you to read. I promise not to bore you with just my angst and woe from my ills. I'll also try and share interesting things from my personal and work life, give you an insight into what's happening in anatomy research or just show you the steak I'm having for dinner.

If you care to head over to the About Me section, you'll find a much more indepth biography about me, my life and my illness history, which you'll hopefully journey with me on this blog as I start treatment :)

Thanks,
Robyn.
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