Wednesday, September 30, 2009

Shot #8 is in the bag, err...body

Well #8 went in tonight. No fanfare there. It is still difficult to stick myself even though I know it doesn't really hurt. Perhaps after a few hundred it will get easier. Not feeling bad yet although I don't expect to until 11 or so.

I have no mentioned much about my symptoms lately as they are fairly static. Things have improved from the IVSM treatment. I can put on my pants still without sitting and my leg tremors are not as bad. Walking is still fairly easy although right now it is ahrd since I went to see Marsha tonight for training. That is always an adventure. Similar excercises but I never know just how hard any single one will be until I'm there. That is a good thing so my muscles don't have a memory but it is funny at times. Tonight my legs were shaking terribly doing planks, it had to be funny to watch.

All in all feeling pretty good. I could always use more sleep, but that is true for everyone it seems. I need to get my bloodwork done to see Dr. M next week but the paperwork is in my dresser, in the garage, at the other house. Not convenient. Julie says she can get it for me tomorrow.

Thursday, September 24, 2009

Shot #7 was much better

Well shot#7 was last night. Timing was a bit different and I'm not sure that was the reason but it certainly is something I'm going to try next time just in case.

I had a headache early in the day so I took 800mg Ibuprofen about 2pm. Then I took another 800mg Ibuprofen about 4:30. I took my shot right at 5 and then went to work out with Marsha at 6. I took another 600mg Ibuprofen about 9pm, again at midnight, 3am and 6am. I did not have a _real_ fever that broke. I may have had a mild fever but it is the 'break'ing that gets you all sweaty and uncomfortable in the bed in my opinion. That never happened. I had to work late / overnight so I am tired, but the shot did not really mess me up like the previous ones have. Let's hope it is the med rotation (so I can keep it up) rather than a fluke.

My symptoms are improving a bit. Yesterday marsha had me high-stepping (for the first time in years really) as I normally could not raise my left leg enough to get my knee 'level' (that is the best wasy I can describe it). I did it 10 or so times in a row yesterday and showed Jule when I got home. Very exciting indeed. Just further proof that I can put pants on again without sitting! Walking is a bit smoother (continues to be nice, much fewer foot drops and drags, trips, etc.). My vision is back to 'normal' if I didn't mention that earlier. The solumedrol made my vision really blurry for days.

Troy, I don't know if you remember but you asked if I could raise my toes while standing once while we were talking at church. Anyway, I couldn't on my left side, but I can tonight. Very cool indeed.

Tuesday, September 22, 2009

Its been a week now

...or nearly so. I haven't posted as changes are slight and I wanted there to be enough to report. My taste is basically back, nothing in particular has stuck around that way. The heartburn comes and goes through the day. I think I'm going to have to keep Tums or Rolaids on my desk. My symptoms are in some ways better, although slight in my opinion. I can put on my pants now without sitting down which is a small thing but certainly noticeable. I think I walk a bit smoother, but no one else has commented on that. My brain fog may be better but I am sensitive to losing words and it still happens so trying to figure out if it is less often is not something I can really do. I've been taking Vitamin D3 (about 10-15000 IU/day) trying to see what it does for me. From another anecdotal source it is a good thing but may be like the mB12 and take three weeks for me to notice it.

Tuesday, September 15, 2009

Ice Cream saves the day

Well it has been about 36 hours since my last post and I'm doing much better. I am not nearly as wiped out and my taste is coming back. I had some Rocky Road ice cream just a few minutes ago and it was GOOD. Hellelujah for small improvements. My leg tremor (clonus) in my left leg has been interesting this evening. It has started (twice so far) and instead of going on forever till I make it stop with my hands, it stops on ts own. It is still doing it, but not as severely. When it stopped both times it felt a little odd in that I could almost feel it wanting to start again, but it didn't. More as notice it.

Monday, September 14, 2009

I don't feel like me today.

I wish there were better words. If there are I cannot find them. I am tired (and perhaps that is because of the meds keeping me up a few days ago), really more like dead on my feet. I am weak and am having trouble stringing thoughts together. Talking takes effort. Everything is just slow and thick and bizarre. I do not like this and hope it passes quickly.

Sunday, September 13, 2009

Slept better but odd morning

Just got out from church and teaching the 3rd graders. I'm very weak
today. It was hard to get the toothpaste out onto the brush. I had
trouble holding my coffee cup without letting it spill. My leg flutter
when stretching this morning was very much reduced. The spasic
stiffness that happens when I stand (for example after church service
was over) was much reduced. I'm not sure what correlation this may
have beyond today but it does seem like it is easier to 'just walk'
and other things seem lessened, but I am just overall weaker. Oddly
though I slept better last night than previous so the early morning
yesterday along with no IV lines last night helped. The bad taste in
my mouth remains although I don't notice it until I put something in
my mouth, which then tastes bad. Coffee was barely tolerable and the
doughnut bites were bland at best. Headed to subway so hopefully with lots of peppers I can taste again :)

Saturday, September 12, 2009

Last bag is in. State of the union

Well the third and last bag of this round finished about 4:30 today. Took the IV out with Julie's help around 5:30 after she got back from an errand. The removal was uneventful as expected but getting all the tape off was painful even with the tape 'remover' stuff they gave me.

The bad taste in my mouth didn't happen this time around that I noticed but it seems the change is persistent. Everything but very spicy things are bland to worse. I think I mentioned in the previous post that an Oreo tasted like nothing so I didn't eat any more. That may be a good thing but it is annoying.

We went to mini-church tonight and had a good time there. The food that I could taste was good (we always have some type of food to munch on). The meatballs were good and the 'kick' of some kind of olive thing was nice because it overcame whatever you want to call this taste loss. We went to QT afterward so I could 'try em all' and really no op tastes good. Sprite is still acceptable, but everything tastes funny and some downright nasty. I don't know how long it will be before my taste returns to normal but for now Hot Tamales are my favorite food :)

We had a really nice discussion with others at mini-church tonight. We were both encouraged by their prayers and some one-on-one type discussions about others struggling with medical issues. Camaraderie is a great thing, especially when you additionally have the same Eternal Perspective. Sometimes it is hard to 'walk' the way the Bible says to (in trust and truth, not by our feelings), but we all have to deal with the way we feel. Every day I and others have to get up and walk through taking our feelings captive to what we know to be true. At any rate, it was wonderful and I hope that others were encouraged also.

There isn't too much else to say for today. I'm going to leave the band-aid on my arm tonight but it won't keep me awake like the IV line did :) I hope I can get really sleepy soon.

4am and I'm wide awake

The pager went off just a bit ago (04:03:26) telling me to check a server and even though everything is fine, I'm up now. Very odd because normally I would look at this, see what I saw, and be back asleep by now. Ah well, not too bad of a side-effect in my opinion. Opened a slim-fast and am going to play a little online. I doubt that I'll get sleepy again, and with my next round tentatively scheduled for 3pm today (so it'll be long-over by mini-church tonight at 6pm), I'll probably be well-wired into tonight. The thing is that it is an awakeness (I know I made it up) that is just like a friend Terry said it was. I am awake but not jittery, not like too much caffeine or adrenaline, just a very normal, comfortable, 11am kind of awake.



I forgot to post this earlier and I forgot about it until just now. HOT. Comes and goes. Hate it. Anyway, for posterity!

P.S. For those of you who are doing or have done the menopause thing and I was insensitive,, so sorry. This is evil.

Friday, September 11, 2009

IV Solumedrol drip #2 hanging now

Yesterday afternoon I got my I.V. line ran and the first 'bag' into me. They are giving me 1gram (1000mg) of Solu-Medrol in 250ml of d5w (some kind of saline with dextrose in it). Anyway, it gave me a bitter taste for about 4 hours during and after the admin (it only take about an hour to get it all in me). They leave the IV in and all taped up with about a 12" leader so I can take care of it without another person helping. It is a little awkward but no big deal. I flush with saline before and after admin and finish with Heparin to prevent clotting in the IV line. Flush and Hep again about 12 hours later, then another dose, etc. Anyway, 3 doses in 3 days. It feels really odd to have this tube hanging out of me that goes right into my vein. Very medical indeed.

The taste is coming on. It has been about 10 minutes. Joy. It is not really metallic to me as I had read before, but more bitter like from nut insides but not as intense, perhaps 1/2 as much, but still that same general taste. Sprite works well against it and Julie is out at QT now getting me some (gotta love a wife like that!).

It kept me up a little last night. I cannot really tell how much of my tossing and turning was the oddity of the IV being in me and trying to no 'mess it up'. I'll know more after tongiht. Well Julie just came back in and we are going to watch a movie while I finish my meds up...

Thursday, September 10, 2009

Shot #5 down, solumedrol to go

The shot last night happened a little late (7pm) and about 11:30 my fever came. Overall miserable night with the alarm wake-ups for meds and the pager going off as servers went away from the internet periodically. Tired today, but not too bad. My joint ache but they have gotten better since I woke up.

The insurance finally approved my Solumedrol treatments an hour ago or so (gotta love last minute work on their part). I go in for my first round in 2 hours. I'll post again tonight after we see what it does.

Wednesday, September 9, 2009

Shot tonight, changing training, getting solumedrol

K. I have my next shot tonight so that'll be fun (NOT!). I am changing my training from Thursday to Wednesday (at least this week, we'll see how it goes). Since my symptoms do not come on for a few hours, it may work better than being exhausted tomorrow for it. This week is a little different mainly because tomorrow afternoon I will be starting my Solumedrol treatments. They will put in an IV port so I can take them over three days. They first will be in their office (supposed to take 1 1/2 hours) and then I'll get to learn how to clean it etc. so I can do the next two at home. I have no idea what it will be like (hopefully not too bad). It is all gravity-fed so no pumps are required. Lots of needles and such this week. If everything works out right, I'll have my shot, my workout with Marsha, then a port and IVs all over by Saturday night. It seems like a lot to get 'in' but better sooner than later we think. Here is a short explanation from WebMD for those who may be interested.

Tuesday, September 8, 2009

We Arrived

Well we finally got our necessities to our intermediate living space (courtesy the C's). Tonight we'll move most of our things into the garage so the floors can be taken up and replaced. What fun! Anyway, I'm tired and will be I'm sure for the next three weeks as we adjust to living away from home (but only about 20 minutes) and what-not. At any rate, I'll be calling the infusion pharmacy today to see what kind of solumedrol schedule they are putting me on. I'll post again when I know that.

Thursday, September 3, 2009

Last night's shot

Well last night was shot #4. The first of my full doses. I got my next month's order in earlier that day so I'm set for the next month. At about 5 I took 800g Ibuprofen, then took the shot at 6. For the first time it hurt. My leg muscle tensed up a LOT for some reason and that was awful. I didn't take it out and try to restick myself, but it took me a long time to concentrate on not tensing the muscle again while I injected the meds. Very interesting and it is sore this morning. I took Ibuprofen at regular intervals: 7, 9, 11, 1, 3, and 5. The fever was as bad as always which was annoying since I go from freezing to roasting and that lways wakes me all the way up. The pager also went off three times so all in all I didn't get much sleep. I feel fine though, no real other after effects. My joints are a little sensitive but nothing like they have been in the past.

I called Dr. W last night and my MRI results were uninteresting (that is a good thing). They are materially the same as they were 15 months ago. I asked about the solumedrol treatment and his nurse will call me back about it.