Sunday, October 17, 2010

A Happy Post

Well, despite my health issues I've been doing my best to keep up with my volunteering commitments like vocal coaching for Red Dreams.

Another project I started helping with at Red Dreams over the summer was a show choir. We weren't sure if we'd get enough kids interested and I've kind of taken it on as my pet project. The first few meetings we had 5-6 kids, then last night at our monthly rehearsal we had FOURTEEN kids show up. I didn't even know what to do with so many! It made me feel good that the kids keep coming back and are now bringing their friends as well, I must be doing something right!

We are getting a small group of them that have been coming since summer to perform a song they've learned on Radio Hartlepool. I'm really proud of what I've done with the show choir, especially getting them singing in harmony and it will be a big achievement for them to have a real performance.

We are also gearing up toward a big fundraising show in December. The show is going to have a swing/big band theme so all of my students are working on swing numbers to perform at the fundraiser show. I'm so glad the theme was chosen cause its really opening my students up to a whole new genre of music they've never heard before. They are really taking to the new style and putting their own stamp on it and its a great challenge for them step outside of what they normally do and try something different.

I've had a bit of a rough week with HSP symptoms, I had a bit of a flare up on Monday but things have been much better since then. It has now been 4 weeks since this started, so hopefully we are now at the end.

Monday, October 11, 2010

Another HSP Update

Well, things seem to be coming to a painfully slow end. I've had no more "flare ups" and I have gotten a few new spots over the past week but all of them have been tiny, don't hurt or blister (they look like someone has dotted my upper legs with a red ball point pen) and within 24 hours they fade to barely detectable bruises and then disappear quickly. That is the good news!

However, the worst flare up I had two weeks ago had left my lower legs covered in blisters which are taking their sweet time healing. The worst ones are around my ankles and feet, which make it impossible for me to wear real shoes. I'm still relying on my flip flops which makes me nervous since it leaves the healing blisters exposed, but I'm taking care to make sure they remain clean and apply antiseptic cream a few times a day to aid the healing process. I just wish they would hurry up and heal already because really they are the last remaining traces of this disease that I have left on my body.

I'm now heading into Week 4, which hopefully means this is it. I just need to meet with my doctor once all of the spots have healed to discuss when to stop taking the Gabapentin, it can have mood altering side effects although I haven't had any that I know of. You will have to ask my husband but I don't think I've had any aggression toward others and while I did threaten to cut my legs off it was out of frustration and extreme discomfort, not any intent to harm myself. Anyway, the literature that came with the Gabapentin says in big bold letters not to stop taking it without consulting a doctor so I'll need to consult with my GP before I go off them. I had to slowly go on them, starting taking one the first day, then two the second day before going to the full thrice daily dosage. I imagine coming off them will be a similar gradual descent.

Anyone who has ever had a badly scraped knee or other healing skin lesion will understand the new phase of discomfort I'm in. As my body is working to heal the blisters there is a bit of stinging and aching and it makes it hard to find a comfortable sleeping position. I just hope my body will hurry up and finish the healing process already!

Saturday, October 2, 2010

HSP Update

I wrote my previous post on Monday, and Monday night marked my worst flare up of vasculitis yet. The back of my legs all the way from my calves to my thighs broke out in a hot rash. It was so uncomfortable I didn't sleep and decided to visit the doctor again that day.

The doctor printed out a leaflet from the NHS about HSP, which was nice to have since what I've found from Googling varied a bit, but the link I posted on Monday was very close to the NHS leaflet. He also did some tests and ascertained that I had a urinary tract infection so he prescribed me an antibiotic. He also prescribed me an antihistamine/sedative that would help me sleep.

He then called the hospital to consult with the medical team there and get their opinion on if there was anything they could do about the persistent burning/tingling sensation that was driving me to the brink of insanity. The doctor at the hospital advised the GP that the sensation I was experiencing was neurological which was why no topical treatments or antihistamines would relieve it. The doctor suggested an anti-epilepsy medication called Gabapentin that is als used to treat peripheral neurological pain.

I went home feeling much better that I'd left with something to treat my symptoms. Even though there is nothing they can do to stop the inflammation or the frequent flare ups of vasculitis, at least they are able to help me sleep and most importantly give me some relief from the neurological pain.

Monday night I slept for 12 hours. It was heaven. This week has been much better than last week. I've slept through night almost every night, I didn't have any flare ups until last night and the only complication has been the swelling of my ankles which can be helped with ibuprofen and staying off my feet.

The doctor told me the Gabapentin could take a week to have full effect. Last night I had a bit of a flare up with just a few small new spots but a return of a bit of the tingling sensation which woke me a few times during the night, but nothing too torturous. I'm hoping by Monday the Gabapentin will be much more effective in subduing that tingling should I experience more flare ups.

I can't believe today marks just two weeks since this whole ordeal began. It feels like its been much longer, and I hate to think this could last for a further 2-4 weeks. Still, the treatment of my symptoms has made the condition much more manageable than it was last weekend so even if the condition drags on for the full 6 weeks I am confident I can manage my symptoms.