As it has now been two months of blogging my experiences, I feel it's about time to update you all on where I am up too. I have my rheumatology review next Tuesday, so now seemed like a good time to start with how I have gotten on the past two months and what I am hoping for from the outcome of my review.
What a two months it has been. If you have read the "About" page then you will know my story up until this year, but as with all autoimmune diseases, they decide to kick you when you are down. In January I was finally give the diagnosis of mixed Connective Tissue Disease...as if having lupus wasn't bad enough, why not pile a few more onto me as well. I had been thinking this was the case for some time as some of my symptoms just didn't correspond to the lupus. Over the past two months I have developed one symptom that quite frankly scares me; swallowing difficulties.
It is like there is a constant lump stuck in my throat, that added with the constantly dry mouth anyway has meant that eating without a drink at hand is hard. At first I put my random choking down to not chewing properly but it soon became apparent that I have a problem and for me anything to do with my throat really acres me. As I know enough about my body to realize when something is just not right, I spent a month keeping my eyes peeled for other random symptoms; maybe this was a throat infection or maybe it was the lupus causing throat inflammation. However one thing struck me, this was not a new thing and here is why.
When I was 13 I had my tonsils removed as they were constantly swollen and infected, it was not very pleasant but it was needed to try and get rid of the permanent lump in my throat...the same lump I have now. This has been going on since I was 13 but back then it was a stand alone symptom. So I rang my rheumatologist who told me to see my GP and my GP told me to see my rheumatologist.....head and brick wall come to mind. As the months have gone on this symptom is still with me. I now cannot go more than 30 minutes without a drink, I have to chew really slowly to make sure i don't choke. Turns out it is Scleroderma....something that lead to the diagnosis of MCTD.
In February, after realising that I have now got many diseases all attacking me at once, the stress got too much. I don't remember ever feeling so alone and trapped within my own body. I was scared of every single strange symptom, every twinge that my body made set me off in a panic, and I felt all this whilst still battling through work. Well it was bound to come to a head and it dead at the end of the month. I woke up to a typical lupus rash on my face ad chest. Nothing new here, but over the course of a day in work it spread encompassing my entire body, with my legs being the worse affected area. On top of this, come 5pm I had the signs of a UTI (urinary tract infection), a temperature and I felt very sick. Straight to the out of hours GP who took one look at me and rang the hospital. The next day I had more appointments at the GP and finally the hospital. I was in the grips of the worse flare up I have had, as this was no longer just the lupus, this was the scleroderma as well.
I was signed off work and for the first 3 days I could put little to no weight on my legs. Where the rash was it felt as though the nerves were snapping....I know that is not a nice description but it's the truth. The swelling, burning, itching turned out to be thousands of inflamed nerve endings. Now if you have ever had a tooth ache, then you know the pain of an infected nerve. Imagine that pain in both your legs, chest, face and back. It was the lowest, darkest and most loneliest place I have been in. I was put on an extreme dose of steroids...moon face here we come...Gabapetin for the nerves and some of the most mind bending painkillers ever. Those few weeks were the most isolated I have ever had, no one understood so I had to knuckle down and push through it.
The isolation is almost worse than the pain. It's not other peoples fault, it comes from being trapped within a body that wont do as it's told, but it is so depressing. I think I spent days alone just crying and sleeping. I mean, what else could I do? I couldn't move, I couldn't function on a normal level, so I had no choice but to lie there and wait for it to pass. Losing hope is a horrible feeling and one that I know we all deal with.
I finally got well enough to return to work mid March, which was also when my 30th birthday reigned down. I would have loved to have had a party, but I wasn't well enough. I had a lovely day all the same, but I was still recovering and looking back I was too exhausted to really understand what was happening. March flew by, each day was so much different fro the last. Some days I would feel well enough to live, happy and calm; then I would be hit by a wave of fog that would throw me back down the pit again. my neurological involvement had got so bad that my anger was causing those I love distress. Finally my GP admitted that I do have CNS (central nervous system involvement) and that I needed help with this. I opted for a specific type of antidepressant that suppresses my anger. They have horrid side effects, but they have been a godsend to keeping me focused and able to live a little more.
Then, last week, as I finally felt I was turning a corner ad coming back to the light I woke up to a circular rash on my arms, an incredible pain in my jaw and dizziness that made me walk into everything. I knew the flare was on it's way back, but these symptoms were odd and so upsetting. Finally this week I was told I have a serious jaw infection, actually if I hadn't have caught it when I did I would have become septic. The jaw infection has caused vertigo, explaining the dizziness. the rash has come about because my immune system has begun attacking e whilst trying to attack the infection. So cruel that when I need it too work it begins to hurt me again in the process.
Currently I am on the strongest antibiotics you can get, they needs to look into what is causing the bone infections. So that is where I am. I hop on Tuesday they will tell me I am a little better, that my last ultrasounds of my joints will be ok and that my blood work is better. Fingers crossed for good news as right now I need that more than ever.