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caroldeleah
Member in Phase 2
| Joined: | Tue Jan 15th, 2008 |
| Location: | Maine USA |
| Posts: | 41 |
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Posted: Thu Nov 6th, 2008 03:32 |
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Deleah is having a fantastic time down in SC. She didn't place in the top 10 in the piano competition but she was so excited to play in the Rodheaver Auditorium.
Two friends who saw her last spring when she was down there, have commented on how much better she looks now (and she's just finished Phase I!) The change has not been as obvious to us because both the decline and the improvement have been gradual. We see individual symptoms improve, but miss the overall gradual change in appearance. One thing that I can't miss is her happy spirit , because of being on a protocol that is making her feel better instead of worse , like the methotrexate did.
Two of her room-mates are pre-med students and conversations have been had!!
We have a pediatrician in town who is also a concert pianist (or is that a concert pianist who is also a pediatrician?). I shall remind Deleah of that when she returns . Gotta advance the MP every way we can!!!
Blessings to all, Carol
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Uveitis/Hashimotos/Hypothyroidism/Thyroid Nodule/Arthralgias/RefractiveMyopia/1,25D34/ Ph1Aug08/Ph2Nov08/25D14(10/08)/Combigan/Cytomel/RefreshPlusSgl
NoIRs/LowLuxHome/CoverUp/Sunscreen
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Aunt Diana
Member in Phase 3
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Posted: Thu Nov 6th, 2008 03:53 |
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Claire....your words ring very true to me. I used to work in hospitals...this is many moons ago....as a "Director of Volunteers". One of my bosses once said to me that he thought the pre-requisite for this job was to have the "hide of a rhinoceros and the heart of a social worker". So I have never really considered myself thin-skinned.
But the lack of support I have received from my family after deciding to do the MP has been a really tough thing for me to understand. And perhaps my vulnerability now, and for the first time in my life that I really have been handicapped have made me a bit thin skinned. I struggle trying to understand this and so far I have been un-successful.
The really sad part for me is that my mother was afflicted with a TH1 illness all of her life. Of course, we didn't know what it was in those days, and nobody did. So the poor woman spent her last twenty years searching for a doctor and of course never found one. But meanwhile she was labelled a "hypochondriac". My siblings now, of course attribute my illness to the same "hypochondria" and I hear one psychobabble explanation after another for what really ails me....and it breaks my heart. Not just for me, but for my mother, who I now realize went through this Hell without a single person ever understanding her real situation. I would give my "eye teeth" for just one conversation with her in which I could apologize for my insensitivity.
So, for now, as far as my family is concerned I have written them off.
The irony is that I can see the illness developing in each and every one of them.....but I doubt they will ever see the "light".
I don't know if this is the right place for these remarks, but something you said really rang a bell, or maybe it's just my mood.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, advil p/n, darvoocett p/n, lorazapam, ambien, benedryl, zantac, magnesium, colase, Noirs, cover-up or avoid sun, house <30l
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1007 |
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Posted: Thu Nov 6th, 2008 04:48 |
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Aunt Diana,
Well...the topic is Unexpected Improvements and that's what I was writing about. I'd like to think that your being able to relate to your dear departed mother is an unexpected improvement for you. Sad, but an improved way of seeing life as a result of what has happened to you and your experience on the MP. Expanded compassion.
I, too, hear people judge others (my mother, for example, and me) with comments like "Oh no pain killers [or sleep medicine] works for you b/c...." This is usually said with some sort of doubting sarcasm backed up with the belief that others (my mother and/or me) are being difficult or wanting to be special, or that our inability to find the right meds is somehow tied to parenting issues (and btw, we really don't want to get well as well), with the person saying it having no idea that as folk get sicker it is often extremely difficult to find meds that help with pain or sleep and some folk get very sensitive to meds period.
The sick person is not doing "THIS" to the healthy people around them, though they may rudely behave as if the sick person is precisely doing that and so therefore deserving of derision or being left behind. Often, these folk are beyond reason, beyond our ability to help them see the true us in front of them (let alone their own existential fears).
Folk can't handle their own mortality and the cruelty that they inflict on others is really to be pitied, then empathized with (like when you realized you didn't "get" your mom--that is, we see the ways in which we too have been insensitive in the past), and finally, I believe, let go.
That's what being disabled and being on the MP is doing: helping me let things pass on by me, helping me let go, allowing other people their misguided beliefs without it necessarily hurting me.
I hope we can all get there while expanding our own capacity for compassion.
I joke with some of my friends that when I am through with the MP, I will have truly achieved becoming Buddha. That's how profoundly I believe this disability experience can impact our lives if only we reach deep and understand our connection to others (regardless of how "ugly" people can be).
Claire
Last edited on Thu Nov 6th, 2008 04:50 by eClaire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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Joyful
Member in Phase 3
| Joined: | Sat Jun 9th, 2007 |
| Location: | USA |
| Posts: | 600 |
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Posted: Thu Nov 6th, 2008 05:50 |
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A wonderful gift to me during this healing process has been the return of the ability to dream the kinds of dreams that reveal truth to my soul.
Near the beginning of the protocol I had an interesting dream that was a shadow of things to come. The dream started with a scene where I was with my favorite group of friends eating a common meal together. After the meal they all went outside and got into a station wagon without me. They headed up a road that was started with switchbacks, climbing a very steep hill.
In the dream I was extremely distressed about being left behind and began to try to climb straight up the hill using a rough dirt trail that was there. I was quickly winded and crying. Feeling utterly exhausted and abandoned, I kept trying to get to the next switchback to catch up with my friends.
When I finally reached the top, I had just missed them as they headed down the other side. Heading to where I knew there was another time of feasting planned. I just stood there, feeling so left out and sad.
Just then, a native american man with a beautifully kind face stepped up to me. He told me not to worry, that everything was going to be alright. Then he showed me this beautiful old (mint condition) vehicle off to the side of the road. It was what I think was called a 'woodie' back in it's day. He was giving me a thorough tour of it, but when we looked under the hood there was no engine! I was upset about the missing engine, but we got in anyway.
He grinned at me, saying, "this will be easy." Then I realized he was a dear friend of mine, but I hadn't recognised him as Jesus until the moment we began to roll down the hill so easy and free without a care in the world. And even though it hurt to think my friends would leave me, I knew I would be able to meet up with them again.
Having had the dream, I found it easier as my body required more and more rest and more light avoidance, to allow the world to go on without me. It helped me to be able to lay aside my feelings of distress, and know that in resting (no engine) and trusting (not driving myself), that my road was to be one of peace.
Last edited on Thu Nov 6th, 2008 05:51 by Joyful
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Lyme?1980 Babs?05 Bart?05 CFS?06 | 125D50 Ph1Jul07 Ph2Feb08 Ph3Aug08 | NoIRs cover up but rarely leave low lux home | 25D15 Oct08 | ABC of MP
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eClaire
Member in Phase 2
| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
| Posts: | 1007 |
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Posted: Thu Nov 6th, 2008 20:26 |
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Joyful,
Thank was an incredibly beautiful and healing dream. I, too, find that important learning, healing and spiritual messages come to me in my sleep and if I pay attention I can learn so much about me and the world.
I've been asked, "How do you know when you've had a dream like this?" Well, so much of dreaming is flotsam, however, when you've had a dream like this it stands out and the symbols presented may require some thought, some gut, some inspiration, and either with that or without you "get" the message.
Thank you for sharing that. I certainly found your dream personally healing.
Yes, peace.
We will fall into life or death, depending on our paths in our near futures, however, my hope for all of us is that we fall with grace and with peace in our hearts.
Claire
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CFS FMS MCS COPD hypermobility IBS/GERD osteoporosis 125D48 25D8 Ph1Dec06 ModPh2Jun07 NoIRs limited outings covered up low lux home abx brk 3/2 - 5/25/08 Ph 2 10/29/2008
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Scarlett
Member in Phase 2
| Joined: | Mon Mar 3rd, 2008 |
| Location: | Ohio USA |
| Posts: | 24 |
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Posted: Thu Nov 6th, 2008 21:10 |
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Claire, Aunt Di, Joyful,
Thank you each one for the lovely dreams/experiences you have shared. I can truly relate. Aunt Diana, your story about your mother I can specifically relate to. However, my mother is living so I have had the advantage of being able to seek forgiveness for not always understanding. If your mother was anything like you, kindness personified, I am sure she would forgive you with a hug and a smile . Ladies, one day all will be well with us and we will go on to help others in our new found health. Thank you Dr. Marshall and staff.
Scarlett
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Sarcoidosis, gastric paresis, osteopenia, hypotension, migraines, dry eye,insomnia, transient global amnesia, initial (2/08) 125D48, 25D58, 4/18/08 25D37, MP-3/3/08, PhaseII-3/28/08 Ambien, NoIRS, low lux home & work, lt exp r/t commute
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Aunt Diana
Member in Phase 3
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Posted: Thu Nov 6th, 2008 22:48 |
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Thank you all for your kind comments.
Wow!! Joyful, that dream was incredible.
My dreams are not coming in so clearly yet......but, speaking of improvements, my dreams are so much better than the psychedelic dreams I had experienced throughout my illness.
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, Oxycodone, advil p/n, darvoocett p/n, lorazapam, ambien, benedryl, zantac, magnesium, colase, Noirs, cover-up or avoid sun, house <30l
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Kas
Member in Phase 2
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Posted: Fri Nov 7th, 2008 15:49 |
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I have some good news, too.
About 15 months ago, I went to see an orthopod about the torn miniscus in my right knee. I was also having pain in the left one and had been having problems with the knees since my late teens.
The surgeion wanted to book me in for bilateral arthroscopic surgery. Dr M was totally against it at the time, so I decided to put things on hold and try and get further along the MP.
Anyway, yesterday I had a follow- up with the same doc who wanted to know if I still wanted the surgery. To my surprise, he pronounced my gait, totally normal, there was none of the previous swelling and because my pain is so greatly reduced and tolerable, he declared that there was no need for surgery at the this point and may never be, even although my problem is mechanical. He also stated that the likelihood of my ever needing knee replacement, is minimal.
Ok, so my liver tests are way up, the kidneys are holding stable below normal(all IP and proof that things are working, I say), but heck, my knees are great, my sinuses are clear, my doctor cannot believe the improvement in my chronic, severe yeast and my legs and feet hardly ever burn, except as an IP. My lungs still have a slight crackle, but their function is improved and my cough is greatly reduced most days. If all of this is not proof of the MP working for me at my slow pace, well, then nothing is! Oh, and I hardly need my Noirs indoors any longer, but still use them when I feel the need.
Yay for the MP!
Last edited on Fri Nov 7th, 2008 15:51 by Kas
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Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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Elisabeth
Health Professional
| Joined: | Tue Feb 12th, 2008 |
| Location: | Missouri USA |
| Posts: | 125 |
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Posted: Fri Nov 7th, 2008 22:26 |
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Wow! Great report & encouragement Kas!
Thanks for sharing . . . .
Elisabeth 
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CFIDS FM hypothyroidism depression TMJ sinusitis bronchitis Ph1 Mar08 (1/08) 25D10 (3/08)25D24 (9/08)25D12 (1/08)TSH5.8 (9/08)TSH0.3 Ph2 June08 Zoloft Synthyroid MgOx Colace FiberChoice Lactaid NoIRs homebound in lo lux
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JanEE
Member in Phase 3
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Posted: Sat Nov 8th, 2008 03:51 |
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Great news Kas! I also have a torn meniscus, plus a Baker's cyst, in my left knee, so I'm happy to read your good news.
Over the years I've had several injuries on that leg/knee. Then several years ago I fell when my foot caught on something. It twisted and pulled my leg both at the same time. The next day the pain was so bad I could hardly walk. Then, after I'd been on the MP a while the meniscus tore while simply getting up from a chair. The horrible shooting pain from that kept happening over and over, each time just about knocking me to the floor. Just as it was beginning to feel a little better I fell down the last two or three stairs in my house and banged it up again. It finally feels good enough to walk on, but I still have to be careful of the position I get it in. Kneeling is hard. It all feels better on my good days, so I'm hoping that more time on the MP will heal it completely.
I have found a procedure though, that I'm hoping will prove to be an answer if it doesn't get better. I just stumbled on this online one day and checked it out. It's about a vet, Dr. Jimi Cook, who discovered a procedure to heal torn menisci on dogs, and it has now been okayed for use on humans. I found many links about it, but here is one to read. I'd be anxious to hear the outcomes on people before giving in to the treatment though.
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=18643
My best to you Kas, and I wish you continued progress. You have had a long trip getting here.
Jan
Last edited on Sat Nov 8th, 2008 03:55 by JanEE
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armoir thyroid promethazine mag B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D11
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Kas
Member in Phase 2
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Posted: Sat Nov 8th, 2008 15:35 |
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Thanks guys.
I still have a LONG way to go on the MP and lots more to conquer. I need to see that liver and those kidney tests eventually start returning to the more healthy looking range, in particular. I need to know what it feels like to have BP that cannot go as low as 60/37 or goes higher than 75/45 and gives me my old level of energy back. I need to be able to enjoy the great outdoors again fully. But, I am one patient lady, and having seen my dear late Mom go steadily downhill on steroids, I am prepared to take things very slowly to get to my goal of returned health. The trick here is to be able to carry on with life to the best of your ability whilst on the MP, to take abx breaks if you go away, to adapt to the light situation in the most fashionable way ( without looking freakish!) and not to allow your illness or treatment to define your life or even prevent you from having great times. If you are going to get extra light, take extra Benicar. Perhaps I cope with my working life because I take benicar every four hours during the day, for the most part. If I am at home, I try and push it every 6 hours, but seem to go back to the four hourly dosing because it works for me. I have also learned to space my abx out to every three days or longer, if necessary. It still works at killing the bacteria, but allows me to live a better quality of life whilst on the MP. If you do cheat a bit ( not in the beginning), you learn the consquences and how to deal with them. It's kinda like being on a diet- sometimes you fall off track, but you can always climb back on again without too much damage having been done.
The MP is a large part of my life, but it is not the only one. I teach, I study further, I travel, I am a wife, Mom, friend, volunteer etc and with the exception of close family and friends, the MP is not something discussed or even known by anyone else I work with daily.
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Sarc Dx by splenectomy 03- Lungs, lymph nodes, liver. Non MP meds: natural progesterone cream three weeks a month; cal/mag; probiotics; milk thistle daily; cranberry caps prn; quercetin prn.Noirs outdoors and under flourescent work lights, Spectra 3 cream
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Elisabeth
Health Professional
| Joined: | Tue Feb 12th, 2008 |
| Location: | Missouri USA |
| Posts: | 125 |
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Posted: Mon Dec 15th, 2008 20:58 |
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OK guys (& gals!); I've got two new ones:
1) The beginning of Nov. I was able to walk around the block (at a fairly good "clip" I might add!) without getting short of breath or having chest heaviness. WHEW! In fact, the last few hundred feet I was able to jog. Yea, it's true. Can you say, "HAPPY?"!?!
I wasn't wiped out the next day either, so I didn't have to "pay" for my fun - hee! hee! (As a "mile marker" of improvement: last year this time I could not walk 1/8 of a way around the block because of utter, inexpressible fatigue - and then was exhausted for a period of time from having tried = discouragement!)
2) This may sound surprising given #1, but I am now sitting up at my computer desk to do computer work more frequently instead of reclining on the couch w/ the laptop. It's amazing to me how much difference there can be in energy loss between sitting w/ my legs horizontal &/or vertical. (I know Claire has posted her experience w/ changing from lying horizontal to going more vertical).
Christmas Blessings to all - and to all a "good (MP) cheer"!
Elisabeth
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CFIDS FM hypothyroidism depression TMJ sinusitis bronchitis Ph1 Mar08 (1/08) 25D10 (3/08)25D24 (9/08)25D12 (1/08)TSH5.8 (9/08)TSH0.3 Ph2 June08 Zoloft Synthyroid MgOx Colace FiberChoice Lactaid NoIRs homebound in lo lux
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Sunbeam
Member in Phase 2
| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
| Posts: | 299 |
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Posted: Tue Dec 16th, 2008 03:00 |
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Great news Elisabeth and so very encouraging for everyone that you have reached such a milestone. I hope you continue to make progress and are able to enjoy the Christmas period,
Take care, Lynn
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D 6 2/08
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Elisabeth
Health Professional
| Joined: | Tue Feb 12th, 2008 |
| Location: | Missouri USA |
| Posts: | 125 |
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Posted: Tue Dec 16th, 2008 04:19 |
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Thanks Lynn.
My IPR has been quite "high" of late & I'm attempting to get it to a more tolerable level to truly enjoy Christmas this year (was so ill last year).
Merry Christmas to you & yours also!
Elisabeth
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CFIDS FM hypothyroidism depression TMJ sinusitis bronchitis Ph1 Mar08 (1/08) 25D10 (3/08)25D24 (9/08)25D12 (1/08)TSH5.8 (9/08)TSH0.3 Ph2 June08 Zoloft Synthyroid MgOx Colace FiberChoice Lactaid NoIRs homebound in lo lux
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