Sorry for dropping out for the past month.: things have been absolutely insane. Now that they’ve calmed down a bit, I thought I’d give an update. In March I took my family to Italy, specifically Rome, Pompeii and Venice. I made it half way thru the trip before my body said it needed a rest day. Considering all the walking we did, I think that was pretty good. I took it easy in Venice, leaving my husband and kid to go off and see the city. Oh and I couldn’t really eat anything, so I had a blender and continued my liquid diet. I tried food like I did at home, but it just caused massive heartburn and pain due to the prednisone and peripheral neuralgia. Really not fun watching my kid eat all that luscious food in front of me . I did get vegan gelato, which was awesome.
So then we get home and I realize I have a cold-it hits me like a bus since my body is exhausted. Still, I had things to do, right? No rest for mommies. Easter coming, lots of preparations. Then one day I’m preparing dinner and I sliced off the tip of my index finger while cutting carrots. More body trauma. On the plus side, I think all the gabapentin I take for my neuropathy really helped control the initial pain. So then I spend about a week in real pain, drugged up, refusing to look at my really ugly, icky finger. Btw my 10 year old saved the hacked off part and is “mummifying” it naturally in colorado’s heat in my living room-so gross. I’m now off painkillers for the finger, it looks pretty good now and is healing.
Throughout all this I decided I wasn’t going to back off my tapering schedule. I’d held off while traveling, but felt I should taper upon return. Yeah, smart. So it didn’t really feel “good” tapering from 55mg to 50, but hey, I felt like crap anyway and was on vicodin so …
I’m now on 45 mg. I went to the gym to “work out” for the first time this week, which consisted of 45 min on a treadmill (walking pretty gradually up to a max speed of 2.6mi/hr-whew!). I did not feel worse than before I got on the treadmill, other than my bruised ego as I watched much older people blow past me in their physical endeavors.
I do have a few questions about a few weird things that have cropped up, but I’ll post them separately. I look forward to catching up on all that has happened the past month-hope everyone is okay.
Hi lisa, omg who do you think you are super woman! Yes we need to stay fit but please take things just a bit easier otherwise you may exhaust yourself. Treadmill work is great, but I only do 20 mins and 1 mile and at 3.5 miles per hour. It gets my heart beat going without exhausting me. (I've always been a very fast walker).
anyway, I'm glad you had a great holiday with no real hiccups. Great to have you back and to know that things are well with you. Regards christina
So glad you are back. I need someone who uses a treadmill! We are close to the same dose of preds (I move to 45 mgs on Sunday) I cannot imagine the finger but your great trip to Italy gives me hope. I had to cancel an ambitious trip to Scandinavia to eat meat in Lapland(Finland I am 1/2 Finnish) but the doc was correct to suggest we wait. I drove a car today without wrecking...progress, ann11195
I could never walk the T-mill for 45 mins. some days I'm lucky to do 10 or on a good day 20. Today I decided I needed to get back the strength in my legs. I used to be able to do squats.... tongiht I did 5... I also could do a wall sit for 40 secs NOW I'm lucky to sit for 6 sec. But this is a start.... I'll try again tomorrow.
Sorry about your finger!! 45mg of Pred wow. I take 6mg. But I know everyone is different.
I would have postponed my trip but i'd promised my 10 year old for two years. Her father had a heart attack in the fall and then I became sick with GCA in december/jan 2015, I just couldn't postpone this.
And I know what you mean about driving. there are days I don't drive-those are the "bad" days. Hubby takes my kid to school on those days.
I couldn't walk on a treadmill. Full stop! Even now - simply not flexible enough for when legs aren't entirely compliant...
And at first I would suggest you DON'T do these things every day - plan a day's rest between until you are better trained. You will almost never feel the effects of the exercise immediately - your muscles are intolerant of acute exercise, won't tell you when you have done too much and will take a longer time to recover afterwards. I always started the ski season going up for 2 days in the first weeks but only doing a few short runs, however good I felt. I couldn't do more than that without muscle cramps for 2 or 3 days. By Christmas I could do more short runs but no long ones, I needed the rests on the lifts - that took until February. Earlier in the season all it took was one single long run, the same as 2 or 3 short ones that I could do comfortably, and I got thigh cramps that lasted for days.
Eileen, I walk every day. Maybe not on t- mill ...I have 2 dogs and I walk them at least3or 4 times a day. Granted these are short walks but walking is the best ... Walking is good for heart, lungs, bones and your spirit !
More is not always better .... We need to pace ourselves... Small steps small gains but we'll get there again.
I agree Judy. , starting on these is not suggested for most people, but it sounds like you're fine for a treadmill. I had to start just learning to walk again, then I got a small personal trampoline with a handle (very important as I could barely balance). on the trampoline I didn't actually jump, I just swayed back and forth, lol. too funny. my 10 year old thought I looked like a zombie . I did this several times a day in very short periods like a few minutes at a time and slowly built up strength. I also saw a physical therapist. Treadmills help because they have handles, you can go slowly, and there's someone at the gym to watch you and make sure you don't overwork. And you can get one for home. ( I hope to do that soon). I used to go to the gym several times a week before GCA. I did the trampoline the rest of this week because my body wasn't up to the treadmill. hope to go back when it is. Each day is different when it comes to my balance and energy...
yes, in fact I went from 60 mg to 80 mg because my headache wouldn't go away. then I went back down to 60. sometimes i've had a headache, but for the most part I just get a little tired and slightly achy. Then again, I've suffered from every single side effect, so it's hard to say exactly what triggered what.
The fear of headache will just be huge for a long time.. And fear of optic issues. I was only on 80 mgs IV at the hospital...that dose has to bring on big side effects. I am just fatigued now at odd times, cannot really plan much. BUT no headaches and even tired I get on my treadmill and feel better afterwards. Ann11195