So… Featured pic is BREAKFAST!
That is 60mg pred. 60!!! I was on 2.5mg for the whole month of August!!! Absolute fail… The reasoning for this comes in several parts, but needless to say I am quite buzzed. Very rarely had 60mg before, except for when getting a few infusions of methyl pred and although I managed some sleep last night, I also made the spontaneous decision to go to Grasmere Guzzler beer festival to see a few bands and was high as a kite for the whole evening! No, I did not drive. Many thanks to my driver 😉 Proper giddy kipper and basically had more energy and talkativeness than I have had in the whole last month combined haha! I think this is going to last a few days at this dose anyway, before tapering down again. Preparing myself mentally for hideous sleep deprivation though, I found it insanely bad in hospital on 30mg daily for the majority of the time, so goodness knows what 60mg is going to be like 😦
Reason number first… This little shit!
Fester (the big toe next to what was Death Toe and is now Kevin Spacey – ps how healthy and adorable does Kevin look!) has kicked off AGAIN for maybe the… sixth time? Was a little red and tender for a few days and then started waking me up on Friday night. Having not had infected toe pain for a while, it was horrible to experience it again, especially in the middle of the night when my imagination started going wild and life was meaningless and dark rather quickly… It was also very obvious when it crossed that line though, so for that I am grateful as I have been so cautious and worried about whether or not I would catch it quickly enough.
Excuse the toenails by the way – all of the drugs and infections for the last few years have done some serious damage to my nails, but they are growing in quickly and healthier, as you can see near the base! Part of me wonders if that has helped cause the infection, having healthy stronger nail pushing into the side of my toe? Have had many starting in the exact same area though, so it is definitely a dodgy spot anyway and probably weakened to some extent (although not exactly sure how that would hold up factually…).
Reason number next one? Hip hole!! Needs a cool name please, will take suggestions…
This is now (on the left) and when I first had the biospy taken, mid-Feb approx. I have been getting dressing changes and avoiding infection for MONTHS and until maybe a few weeks ago, it was healing over and thought to be on the last few dressings. Then it started to slide backwards and has slowly begun to open up again.
I saw my consultant a week ago Thursday and at the time he asked his dermatology colleague to take a look at my hip. He suggested I had possibly developed something called Pyoderma Gangrenosum… This is NOT gangrene, it is a rare skin condition where your skin breaks down to form ulcers and can be either a condition in its own right, or can develop in existing wounds. It is a little more common in people with other autoimmune diseases and would be a good explanation for why my skin has started to break down. My GP and practice nurse had a good look into it and agree it is best to assume it is this, so I had already started treating it with strong dermovate cream twice a day and it is being checked very frequently for a while to see if it helps. Added another bit to the stupid jigsaw! The high dose pred will also hopefully help with this, as if it is PG then high dose steroids are one of the most effective treatments.
Reason number last bit doesn’t come with a gross picture sadly, but just generally for the past few months I had started to slide back into mega fatigue and all over joint and muscle aches. By the time I saw my Consultant, I was at the point where I said I was now considering it as pain again. You get used to a certain level of background aching and stiffness, which I am glumly assuming will never fully go away. It is so hard to pinpoint when it even began, because it just crept up as slowly starting to feel ‘a bit naff’ all the time. This latest flare up began with much the same resurgence of more and more days feeling like ‘bad days’ when looked at compared to the relatively good few months I had in April and June. I was so giddy after getting Death Toe lopped off and the difference in pain was so overwhelmingly brilliant, that at first I did think I was just starting to be less tolerant of the joint and muscle aches, with nothing worse to mask it. But having now had a toe kick off again and my hip being worse, it really does look like it was the start of a proper flare. Maybe not showing up in my bloods (don’t know yet!) because that would just be a miracle given my record of blood tests, but we are generally advised to be aware of the early symptoms we showed, as they are usually the precursor to flares.
Had to give up Solfest this year – ticket refund was agreed at the last minute (on the day!) as I had the Consultant appointment, but honestly, the bit which upset me most was that compared to last year where I felt determined to do as much as I could despite the pain and feeling crappy, this year I just felt like I didn’t have the physical or mental energy to even want to try. I managed a lovely weekend regardless, with a visit from my baby bro and his lovely lass; they cooked for me and we watched films and it was glorious. That same weekend I was also compensated by going to the wedding of one of my best friends – cried the entire way through the whole ceremony… Apparently weddings make me a mushy puddle of goo! I didn’t manage a lot of the reception, but saw the speeches and cried a bit more, had a lovely time meeting some fabulous people – and the food was ace 😉 Going to Grasmere last night and being so hyper on the steroids reminded me how I used to feel at social events, when I would have a little bit of alcohol and be super happy to see all my friends and have the energy to not be focusing on moving around carefully, or being too tired to stand up. I had a bit of a dance!! I have been wondering more and more recently whether I actually fit more into the category of someone who is an introvert; someone who is drained by socialising and interacting with groups, even if they enjoy it. I had always assumed I was an extrovert from the little I have learned about it, although I can’t claim to fully understand it all, and had been a bit confused about how much I didn’t want to see people or leave the house recently. I think last night was a bit of a clue that it really is the condition that has made me struggle so much lately with social events – when I have ‘fake energy’ from a massive steroid buzz, I am absolutely over the moon to be running around and talking to everyone and quite happy blathering to strangers in a queue… Apologies to everyone I scared last night haha – I was absolutely wired off my face, it felt like the back of my eyeballs were plugged into giant sockets 😀
End on a few happy notes? Yes back on lots of drugs for a bit, but have been managing four hours a day of work for the last few months now and it is going nicely. Apart from my beautiful ergonomic keyboard breaking the other day… That was a bit sad. My managers and colleagues have all been really supportive and happy to see me back, which has meant a lot and made it so much easier. I was terrified I would have forgotten everything and be either failing to get the work done to a high standard or be unable to hit the targets, but I actually managed to exceed both my own and work’s expectations which was really lovely. Particularly when feeling a bit worse the last few weeks, four hours has been plenty – I am shattered after work most days and it leaves very little energy for anything else, but having a routine and knowing I am managing to work again has been worth it for now.
The other nice thing of the last few months has been my hair starting to grow back very fast – particularly underneath, the lower layers had thinned out dramatically and it has not only quite suddenly stopped falling out, but has started to grow back very quickly. Underneath I have a dense curly undercut coming through, which is amusing me no end, but the most obvious place to see it is around my hairline on my forehead 😀 Check out the baby fringe below!! I am trying to encourage it to fall in line with the existing curls, but have some rather cheeky misbehaving bits that want to stick straight up allllll the time. I am aware this is largely going to be due to having being on a lower dose of pred for quite a few months (not any moreeeeee!) and also it being a while now since I had the cyclophosphamide infusions (Feb) and the latest rituximab (April). Have been on a steady dose of mycophenolate since April, but apparently although people do commonly experience hair loss on this one, it does also usually settle after a few months. I really never used to lose any hair before being ill – hardly any ever came out in the shower and I never brushed it, so to suddenly lose what for me was a lot every day was scary. I know a lot of people go through worse and a lot more dramatically, but all I can say is although the drugs are very important, don’t downplay the mental impact of the ‘little things’ like hair loss, as they can have more of an emotional impact than the ones you would think would be worse, like getting a toe amputated! Still, when the drugs are necessary, the drugs are necessary.
I also started a different way of looking after my hair lately, about the start of July, at a point where it was still falling out very fast and showing no signs of stopping. I again cannot know how much of an impact this had, due to the drugs, but it was after about three weeks of this method that my hair stopped falling out. As in second picture, my hair is now the curliest and healthiest it has ever been. It has taken a good two months to get into a routine and find what works for me, but it has been worth it and I am eternally grateful and delighted that I found out about this 😉 You basically stop using any silicones, sulfates, mineral oils or drying alcohols at all on your hair and only use conditioner that fits those criteria. This means no shampoo! I have not used shampoo for two months and honestly, my hair is the cleanest and happiest it has ever been. No greasy scalp, hair is not weighed down and smells fresh and clean, even if I don’t fully wash it for a few days. If anyone wants to know more, search for ‘the curly girl method’ – works on all hair types, just particularly makes a very obvious difference if you have curly or wavy hair, as it accentuates any natural wave you already have. Now I am going to take some more drugs wooooooo!!!