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Phospheros
Member in Phase 3
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Posted: Wed Feb 18th, 2009 14:08 |
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Even though I've been on the treatment since 07, due to some stops & starts & having to repeat phases, I am really at about the 1 yr mark on this treatment.
The really good: I'm back in school. I'm having to repeat a lot of undergraduate stuff because my time off sick really screwed me on being able to transfer credits. *(They want within the last 5 years for accepting them, thats hard to do when I was off & disabled for far longer than that). I'm doing reasonably well in school, though it is much much harder for me to study & get through classes. The effort involved is considerable compared to when I was fully well. I have more difficulty comprehending, but I did manage to pull an A or two out of the mess. I have the energy to spend most weekends with my girlfriend & do running around. I can play with the kids, and for the most part I'm a pretty good dad & enjoying parenting again. They understand about the glasses & the light. I wish I could take them out to things like 6-flags and what not in the day, and they would love that, but not going to happen while I'm doing this except for maybe at night. I probably technically no longer meet the definition of RA. I haven't had the morning stiffness in many months, though I do get the occasional bit of joint pain & swelling.
The good: Many around me do notice a difference. My girlfriends observations (Met her in March of 08, right as I got done with phase I, and then had adrenal failure that kept me off the treatment for awhile): I have far less problems with myopathy, tremors, my speech is better, mood is better & more consistent, my pain levels are generally lower, sex is better & more consistent, and I'm much more able on average to do things. My own observations: Its a little easier to speak clearly, I have less problems tolerating the light (on average, some days its still hard), I don't lose quite as many days to pain as I used to, and my pain levels on average are lower. My pain is actually pretty well managed, especially compared to the rough days of phase I. The food sensitivities I had before beginning this treatment have almost completely disappeared. I can have tomato soup and not suffer, even pizza with green peppers. I can cook with jalapenos and it doesn't bother me at all. Eggplant? No problem. Potatoes? No problem. All of those were strictly off the menu when I started. I used to get severe RA flares from them, and severe FMS-like pain flares from them. Now its down to the every once in awhile it upsets my stomach slightly.
The bad: Phase I was frickin' brutal. Days & days & days & days in bed, it seemed like all I did was sleep, get up for a few hours that I didn't get to use for much, and sleep again. I didn't enjoy most of phase I at all. Mod-phase II was also rough. The mental effects it had were very unpleasant. Memory loss during periods of it, extreme head cloudiness, mood swings, insomnia, increased anxiety, fairly high pain levels during, and anxiety attacks. Glad to be done with that. The fatigue on phase II has been worse than what I experienced in mod phase II, and at the tail of phase I. I had to give up bacon entirely, and pretty much have given up hamburger, most beef (unless I can get a cut so lean its virtually fat free... ever trim a steak with marble in it?? 30 minutes trimming for dinner!), and pretty much all pork products. The only white meat here is chicken, and skinless chicken breast at that.
The really bad: Adrenal insufficnecy hit me, and probably hit me twice attempting this. That put a significant delay in treatment, and I went downhill during the period of just being on benicar waiting to get back on the treatment. I also had a run of severe inflammation of the intestines, much nausea, and a round of tietze/costachondritis, plus some inflammation of the heart. Taking benicar on the severe immunopathology schedule helped put that back in line, but the strength of the reaction was shocking to me, and it made at least one of my doctors a lot less cooperative in the process. My blood pressure has been low since the adrenal insufficiency incident, but it is climbing back up with time. The adrenals are slowly recovering, but even I don't think they are fully up to par, I know this is partly a source of my fatigue. (Within the range they call normal function, but with life stresses probably should be higher).
I can't say that the treatment hasn't given me parts of my life back, it has indeed. Its been a very rocky road to get here, and there are risks involved. Respect the IP, it can come up and bite you severely if you aren't prepared for it. ALWAYS have a ton of benicar on hand...You never know when you are going to need a mess of it. There IS a learning curve to this treatment, and don't be afraid to take extra benicar in abundance if you truly need it and experience severe immunepathology. It takes some faith, but it really will put those flares down if given a bit of time and maintained at a high level for awhile.
My hopes at this point are that the severe head clouded periods become less & less, that I regain more enery and can put the fatigue to bed, and I can get enough back to try part time work again by the summer. I'm pushing my limits pretty hard just doing what I am doing with Kathy (the girlfriend), the kids, school, and the other things I have to manage. If you have the luxury of time to take to do nothing but get better on this treatment -- consider doing it. Its easier when you don't have to fight through as much to deal with the herx. Consider the year, or two years time well spent. I'm thinking of taking the summer off from school - or just dropping to 1 class if I can, and cutting down in other areas to allow myself just that.
The docs are kind of wondering if what I have is really neurosarc at this point, but they haven't done a lot in the way of testing. In the technical sense, I no longer meet the definition of RA. I no longer have the prolonged morning stiffness. I've had remissions like that before from it, and I still felt lousy when my joints weren't inflammed and the morning stiffness settled down. I'm hoping this is permanent, and my overall malise will reduce further. I do feel better than the "remissions" of the past, mostly due to lower pain levels, but by the grand constellation of total symptoms measure: I have a long way to go before I'm done... There is a reason this takes years to get through... Kathy and I are watching with quite a bit of interest those very few whom are hitting the 4 and 5 year marks now to see how they are doing, and see how they do in the years to come.
Last edited on Wed Feb 18th, 2009 14:19 by Phospheros
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FM RA 125D27 Ph1Mar07 brkAug-Oct07 r/t SIADH ModPh2Dec07 Jan08 costochondritis abxbrk Mar-May08 r/t prednisone resume Ph1Jun08 MScontin Roxicodone ranitidine Naproxen Soma Ca/Mg @RDA NoIRs limited outings covered up low lux home 25D11
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BARNEY
Moderator
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Posted: Wed Feb 18th, 2009 15:23 |
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Oh Phos, (& Kathy)
What a truly inspiring and wonderful post. You just thrilled my soul. You have all the right ideas for recovering on MP. I hope everyone reads your post that is thinking about doing MP.
I am in my 4th yr and you are so right..........we did not get sick overnight and we will not get well overnight.
I loved the part about resting the 1st 2 yrs.........it is so important.
I discovered that when going outside for whatever reason....it is very important to drink plenty of water. It really stresses your body if you don't. If I drink enough when being out running errands etc....I don't even remember I am ill....what a vast vast improvement for me.
Keep up the excellent work.
HANG IN THERE, WE WILL MAKE IT!!!BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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thelymelight
Member in Phase 1
| Joined: | Fri Nov 4th, 2005 |
| Location: | Ontario Canada |
| Posts: | 186 |
| Status: |
Offline
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Posted: Thu Apr 30th, 2009 19:52 |
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Hello Phos.
I was reading your progress report and you mentioned that you suffered an adrenal crisis, probably twice...
Wanted to know how you knew you suffered an adrenal crisis? Had you been on prednisone and was coming off of it? Could you explain this in a little more detail?
Thnx
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Lyme, Babesia,19+ yrs, neuro-psych-cogni|Sept08-125D/30.42; 25D/8.40; Feb09/10.40; Jul09/5.60 Olmesartan/Feb08; Ph1/Feb09. Low lux-some areas of home. MEDS: Thyroid 7.5mg, Cipralex 10mg, weaned Hydrocortisone. Cal/Mag 150mg each.
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