Blogging just doesn't come as easily as it used to but I do miss it and hearing from you about your own stories and lives, it's what I love about blogs. Anyway a lot has kind of been going on and I thought I could probably write a coherent blog as a bit of a way of sorting things out in my head a little.
So far this year I have had 21 different hospital appointments. In the scheme of 'normal' folks that's a lot! But in the scheme of CF or other illnesses I guess it's not that bad. It's more confusing when you are transplanted so technically a 'healthy' person and getting used to not having to go rushing to hospital on a regular basis, learning to unclench a little. Then bam you're back and forth a lot again and the anxiety and tension creeps back in. It makes for quite a head f**k pardon the expression.
So, why so many. Well, in no particular order, I broke my foot and was in plaster/air boot/on crutches for 5 weeks. I have osteoporosis and am on Steroids permanently after transplant which also reduces bone density. I was walking along a station platform on a lovely sunning evening and suddenly felt a cramping in my foot, odd. Carried on to my train, had dinner in town, walked around London and came home with a sore foot. Basically I walked round on it for 3 days, decided it was hurting so I should go and get it checked and yep.... Fractured my 4th metarsal near my ankle doing....absolutely nothing! Once again the whole healthy back to being dependant again further exacerbated the head f**k scenario.
In addition to that, I have needed a review on my liver, something that was due but has always made me extremely nervous about since being diagnosed when little. I hate the word veins (hard to type it!) and anything to do with that makes me go cold inside. So appointment with new doctor and an MRI scan, but thankfully everything is ok. I am having a bone density scan on Thursday to check out what they are doing. I've also started seeing someone for problematic sinuses and found out they are inflamed, gungey, have polyps and a deviated septum. I have also been experiencing a lot of pain lately. Always had a lot of back pain but it has started to effect my hips very badly, my knees and joints, in particular my hands which are hindering my work as a cake maker. So I last week I went to see a rhuematologist. Very mixed results there! I am very hypermobile, double jointed or just extremely bendy. It means I can do stuff like this and bend forward to put my palms flat on the floor with ease (I genuinely did not realise that this was something not everyone can do).
Combined with my harsh medications means this can cause a lot of pain and problems. I need to see a physio to tell me how best to deal with this because bending them too much will cause me more issues. I also need (get ready...) a spinal MRI, X-rays on hands, Ct scan on hands, possible assessment for sprints on my fingers, referral to a pain team because even all that is causing problems, there are no real answers for what they can do. The pain does get very bad and brings me down a lot.
I am also at Harefield, my transplant hospital on Thursday. The fatigue which has been a part of my life for the last few years has been hideous these last few months. Combined with everything else I have felt like I'm going backwards. It's not a simple tiredness but bone aching exhaustion. I'm desperate to live my life while my lungs are good and I know how precious this time is but its like one issue has swapped for another and I am still very restricted. People don't see the days inbetween the ones where I push myself. Anyway, I have had more iron infusions but didn't help. My consultant could see how desperate with at my last appointment. He was stumped. After looking back through all the tests I've undergone he found an anomaly and decided to try me on ramped up doses of steroids. My initial reaction was panic. Steroids make me bloat up, make me crazy with emotions, cause deep depression and have some seriously horrible damaging side effects. The theory behind the decision is that patients on long term steroids can sometimes stop producing their own natural steroids, known as adrenal fatigue. Well, I felt better almost immediately, it was manic first of all as though I was a cartoon character zooming around, but that soon eased and I just felt better. For the first time since my transplant I felt that THIS was how I had always wanted to feel. It sounds so stupid but it was like a weight was lifted and inside I was dancing! With hope and possibilities. Anyway I was still contending with side effects and diabetes going out of control etc. steroids are too dangerous to remain on this dose but it seems we may have something that can be treated. I feel like I'm at the beginning of a long road to finding the right treatment vs side effects for me but there is a hope that I thought was gone.
Anyway that's all for now but I already have a few ideas for blogs to come soon. Hope you haven't all fainted with shock by the fact I'm blogging!