A Kat update

Saw rheumatologist today.

I survived winter relatively unscathed, managed to avoid the Prednisone though had about 4 bouts of vasculitis and a few of chilblains. The last lot of vasculitis in the last few weeks seemed to have been too much for my finger. Have had an open sore on the spot where I lost flesh two years ago. It's almost healed now, and actually the healing has been more painful than the sore at its worst. My nails are damaged as usual, and will start cracking and being generally bloody annoying in the next month or two when they grow out far enough.

Overall he's happy with the circulation and the arthritis. I'm staying on the stomach ulcer medication (strangely my appetite has improved since I've been on it). I'm having another lot of blood tests to check my iron levels to see if there's been any improvement. He was explaining the levels the last test showed. My iron is 3 (the low end of "normal" is about 5), the iron binding level is 5 (low end of "normal" is about 8) and my ferritin, which is a measure of iron storage, is 16 (I can't recall the units, and I'm probably a little off on the names). That is just within the "normal" range, but he said that if he had that level he wouldn't be getting out of bed. Mum replied that that is because he's a man. He said that he knew it was the wrong thing to say as soon as he said it ;)

If the new blood tests don't show improvement, I may need iron injections. Which, according to my boss, are pretty unpleasant. See the doc again in December. He'll let me know about the blood test results before then.

***

Have had more breakthroughs since the dinner a week and a half ago. On Friday we had a lunch for my boss as she's going on maternity leave.

Lunch is the meal I have most trouble with in terms of anxiety and panic attacks. My problems with eating outside my house (and even inside my house sometimes) date back to my mid teens, around 15 years, with the major problems occurring in the last 8 years. So being able to eat lunch out around people who are not my family is a massive step. I understand that many people would have difficulty understanding this.

I was very anxious in the car on the way over (the restaurant was just up the road from work, I went there directly from home) and when I got there. Was battling to keep myself together, and the place was very full and noisy, and I don't cope well with crowds, being warm or lots of noise. It took a while for the food to arrive (I'd ordered fish and chips - I love fish, plus it was relatively bland for my stomach), but I managed to cope, eat nearly my whole meal and enjoy myself a little.

Saturday was my boss's baby shower. While not as much a challenge, it was still going to a place I'd never been before (her sister's house) and being around people, most of whom I didn't know. I enjoyed it with only a few moments of little anxiety.

I know these are little steps, I need to do them again and again, and there will be setbacks (had some anxiety going on the train to the doctor's today). But I'm feeling more hopeful and a little proud of myself.

A Kat update

Saw rheumatologist today.

I survived winter relatively unscathed, managed to avoid the Prednisone though had about 4 bouts of vasculitis and a few of chilblains. The last lot of vasculitis in the last few weeks seemed to have been too much for my finger. Have had an open sore on the spot where I lost flesh two years ago. It's almost healed now, and actually the healing has been more painful than the sore at its worst. My nails are damaged as usual, and will start cracking and being generally bloody annoying in the next month or two when they grow out far enough.

Overall he's happy with the circulation and the arthritis. I'm staying on the stomach ulcer medication (strangely my appetite has improved since I've been on it). I'm having another lot of blood tests to check my iron levels to see if there's been any improvement. He was explaining the levels the last test showed. My iron is 3 (the low end of "normal" is about 5), the iron binding level is 5 (low end of "normal" is about 8) and my ferritin, which is a measure of iron storage, is 16 (I can't recall the units, and I'm probably a little off on the names). That is just within the "normal" range, but he said that if he had that level he wouldn't be getting out of bed. Mum replied that that is because he's a man. He said that he knew it was the wrong thing to say as soon as he said it ;)

If the new blood tests don't show improvement, I may need iron injections. Which, according to my boss, are pretty unpleasant. See the doc again in December. He'll let me know about the blood test results before then.

***

Have had more breakthroughs since the dinner a week and a half ago. On Friday we had a lunch for my boss as she's going on maternity leave.

Lunch is the meal I have most trouble with in terms of anxiety and panic attacks. My problems with eating outside my house (and even inside my house sometimes) date back to my mid teens, around 15 years, with the major problems occurring in the last 8 years. So being able to eat lunch out around people who are not my family is a massive step. I understand that many people would have difficulty understanding this.

I was very anxious in the car on the way over (the restaurant was just up the road from work, I went there directly from home) and when I got there. Was battling to keep myself together, and the place was very full and noisy, and I don't cope well with crowds, being warm or lots of noise. It took a while for the food to arrive (I'd ordered fish and chips - I love fish, plus it was relatively bland for my stomach), but I managed to cope, eat nearly my whole meal and enjoy myself a little.

Saturday was my boss's baby shower. While not as much a challenge, it was still going to a place I'd never been before (her sister's house) and being around people, most of whom I didn't know. I enjoyed it with only a few moments of little anxiety.

I know these are little steps, I need to do them again and again, and there will be setbacks (had some anxiety going on the train to the doctor's today). But I'm feeling more hopeful and a little proud of myself.