Jul 02, 2008 09:51AM
- comments
7/2/08 7 wk PCR shows UND. Starting new thread for phase 2. Insomnia last night. Feel lousy today. Headache, fatigue, brain fog, and my eyes won't focus well. Blood draw this morning. Should know how my ANC looks tomorrow.
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7/3/08 Insomnia and bad cramps last night. CBC shows dangerous wbc. Doc wants me to decrease peg. If my NP would have just listened to me when I said I needed 3 nuep shots a week... I have been through this 3x now, and really hate it when I am ignored. Frustrated because this could have been avoided if I would have been taken seriously....
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7/5/08 Shot last night. Insomnia, nightsweats, and the absolute worst cramps in legs and left hand imaginable. Pure agony. This is starting to get tougher....
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7/7/08 Got through the weekend ok. I even talked Dawn into going rafting with me...
Me, " Honey, I think I need to buy a kayak..."
Her, " Don't be silly, you have a perfectly good raft and we cannot afford a kayak.."
Me, " Yah, you are right, will you go with me down river"
Her, "(sigh) ok I'll give it a try.."
4 hours later.......
Her, " Geof! so awesome, we need to get a kayak!"
Me, "Whatever you say dear....." (grin)
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7/8/08 Insomnia, exhaustion, and Riba rage is the order of the day. I feel angry, depressed, and just awful.
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7/9/08 Much better today. Had lab draw this morning. My extra Nuepogen came in the mail.
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7/10/08 Insomnia, sweats, and creepy crawlies last night. Feel a bit run down but better. WBC are going up thank God.
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7/11/08 Feel good today, slept well. Shot tonight.
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7/12/08 Feel just excellent today. Funny that my best day is the day after the shot. I am working today (have not missed any yet), river is calling me for tomorrow.
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7/14/08 Managed 4 hrs on the river yesterday,but blew the floor out of the raft. Time for that kayak!
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7/15/08 Starting to feel much better. Sleeping well.
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7/16/08 Slept well, but feel pretty ill today. Headache, mild nausea, and very fatigued. Blood draw this morning. Spent my OT $ on a kayak. Hope it rains this week so the river rises!
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7/17/08 My labs came back with HUGE improvement in my wbc. All related white tests showing well in normal range. plts are holding at 47. So why do I feel so lousy this week?
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7/18/08 A bit better today. Seems the days are rough but feel ok in the evenings. Maybe the 4 riba for breakfast is too much. May break up the dosage.
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7/21/08 Felt good over the weekend. We love the kayak. Still feel lousy for about 4 or 5 hrs after getting up, but then I am fine.
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7/22/08 Just tired today. We took the kayak out on Lake Erie last evening and enjoyed it.
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7/25/08 Been feeling good this week. Not many problems at all.
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7/28/08 Still feeling pretty good. Took my son and wife kayaking down the Cuyahoga River on Sat. My son and I had a pretty good wipeout and ended up going for a swim. A little banged up and struggling against the current was very exhausting, but we had a good laugh over it.
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7/29/08 Yesterday I posted my sx were nearly nonexistant. I think I put on jinx on myself. I started feeling lousy yesterday afternoon and last night had bad insomnia. Maybe it is the lack of sleep that has got me feeling so punk today. My kayak dump the other day resulted in a small infection on my knee. First infection I have developed so will have to keep an eye on it. Scheduled to see doc on Thursday and was gonna push hard for the ultrasensitive 12 wk pcr coming up Friday. Did a lab draw this morning and they took 4 vials of blood so I think the PCR must have been ordered a little early. I can only hope they do one with more sensitivity than the <50 that was done at 8 wks. I am at work and it is just awful. I don't know how I will make it. I have an ultrasensitivity to noise that has me on edge and hard to keep it together. This has got to pass soon........ I ordered maitake mushroom caps and methionine from Swanson. I don't remember why I orderd Methionine so will have to go back and figure it out.
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7/30/08 Slept hard and no insomnia last night. But do not feel much better today. So fatigued... Spacey, headache, lethargic. Depressed. Wondering what caused so quick a change? I ran out of Culterelle and Sam-e and Selenium a few days ago. I am back on the selenium but the others are expensive and will have to wait. I added Methionine (went back and researched) and it is a "booster" for the glutathione supplements. Helps enhance NAC, Taurine, Glutamine. As sam-e is so ridiculously expensive, thought this addition might be a good alternative to restocking the sam-e. I am on just a single dose of the glutathione drugs now as the expense is too much. My PPC supply won't last much longer either. When my head clears, I will have to reassess everything and figure out what is critical and what should be dropped. I will also reassess the dosages and what to take with and without food. I simply cannot keep it straight in my head anymore....
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7/31/08 Phew! Feel much better today thank goodness. The last shot of peg really got it's hooks in me this past week. I see the doc this afternoon and get some lab results... (praying for a buddy waiting on his 8 wk pcr results)
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8/1/08 Labs look good. As I suspected the 12 week pcr was drawn early and waiting on results. It is NOT an ultrasensitive test. I let the NP know I was not happy about that, and she agreed to write an order for it. I now have the lab order that specifies the Labcord<5 or the Quest<2. Now I have got to figure out what to do with it and will insurance pay for it. I hope to get this drawn next week which will actually work out to 12 weeks. This will a milestone so I decided to DD last night. One last big push...............
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8/4/08 Feel lousy. Depressed.
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8/6/08 Yesterday was the worst day thus far. Headache, nausea, fatigue, fog. Better today but not much. Well, I did DD last Thursday so hopefully the sx will ease soon. I cut the Riba from 1600 to 1400 starting today. Had the ultrsensitive pcr <5 drawn this morning. Should get results in 10 days or so.
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8/7/08 Blessed relief! Feel like my old self today. Peg finally wore off but, shot night is upon me!
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8/8/08 Feeling good! Shot last night but no ill fx yet. Labs still improving. WEEKEND!!!!!
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8/12/08 Been feeling really good past few days. Back on Culterelle every other day only. Still on 1600 (changed my mind about reducing) riba but now take it 200 mg every 6 hours which seems to help with the sx.
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8/13/08 Another good day. Did some hiking last weekend, but my son gets married this weekend so no time for outdoor stuff.
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8/14/08 Doing well. 11 wk pcr (<50) showed no resurgence of virus. Will soon get results of the ultrasensitive pcr taken last week. (12 week). It is a milestone and I am anxious. The dose reduction of nuepogen seems ok.
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8/15/08 Shot last night. Leg cramps and insomnia but doing ok.
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8/20/08 Ultrasensitive 12 wk PCR is UND <5. Sweet. My son and I sat side by side and "jammed" with the band at his wedding reception. It was an awesome day! Feel fantastic today.
