In January of this year, Ella and Michèle had an article published in New Pathways magazine. You can now download the magazine here:
On the eve of pulse 26, I can't help but reflect on some things that people here as well as in my day-to-day life have suggested to me. The suggestions have been good, considerate ones, and I recognize that; however, I have decided not to take the suggestions, at least not yet.
What suggestions am I referring to? I'm referring to the suggestion that I get a cane or a walker. I refuse, outright, until I have no other choice. And despite the hell I put myself through, I have a choice, and I choose to fight.
For a very long time I've been an extremely noise sensitive person. I'm that annoying person at work who tells the guy waaaay down the hall to turn down his music when it's on the lowest possible notch above OFF. My husband gets upset if I want to go to bed before him because then he knows he can't watch TV any more. Despite the fact that the TV is on the first floor and the bedroom is on the second floor I make him turn it down so low he can barely hear it. If I can hear even the SLIGHTEST whisper or vibration from it I can't go to sleep.
Actually, I should say "couldn't" go to sleep.
Lately it seems to have changed. I can sleep with the TV on ... not too loud but it's ok to at least hear it now. I can still doze off without a problem.
Hello, everyone. I 've been experiencing a GREAT improvement in my hypertension and decided it calls for a report here.
For a background info: I've been having high BP for about 10 years. It started around the same time with my hypothyrodism symptoms. I've been taking antihypertensives on a daily basis for the past 5 years. Last fall, prior to starting CAP in Jan'08 my BP went out hand and even on medications it was often 160/100.
I've been on Cap since begining of Jan'08. On my current protocol (Rifampin 600mg /day + Doxy 100 mg x 2/day) since March. At first my BP was spiking a lot. Hypertension crises always were a part of my die-off reactions. My BP became more stable as I was improving in general with arthritis, fatigue, pains.
I am feeling overwhelmed with feeling so bad all the time. At first it seemed like I could muster up the strength to do cap. Maybe I've hit the cross road of why some feel the need to stop. This site has brought me through some very dark days and I thank all of you for your help. Family and friends just don't understand why you feel so bad , after all you are on the road to a cure.
I find myself wanting to be left alone these days. This cpn has taken a toll on my whole life. My job is gone, my energy is gone, I loved to train horses and had to sell them.
Oh, thank you for taking the time to read this pitty party. It's just so darn hard be the one who is so sick and have to fight on each day.
I'm just making notes here...
I finished my second flagyl pulse yesterday. No significant side effects or reaction other than my butt was really dragging towards the end of the week. By yesterday evening I was about to collapse from fatigue. Today I'm so sleepy I can barely hold my eyes open as I type this despite getting a full night's sleep. Hopefully as it gets out of my system I'll get my energy back like I did a day or so after finishing the previous pulse.
On the positive side I'm surprisingly pain-free today. I'll take sleepiness over pain any time.
Can this be aftermath of Tindamax pulse, secondary porphyria from heat/sun or a combo of both? It all began Thursday afternoon (13 days after tini one day pulse) but I was having a lot of stress dealing with the cable and phone companies prior.
Guess it is time for an update.
Jim has been on 2000mgs of tetracycline plus diflucan for a bit. He is pulsing 2 weeks on 2 off. A nice break as 2 grams of tetra can be hard on the tummy.
Overall Jim is better. His motor skills are all doing great, his gait is much improved and he doesn't have pain in his hip or sacrum.
His eyes are a different story. They are markedly worse, painful with discharge (not conjunctivitis). This is when on the tetra. They do get a bit better when on drug holidays, so I assume the tetra is doing its job, although, boy do I wish they would get better for good!