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LH1953
Member in Phase 3
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Posted: Sat Dec 9th, 2006 21:28 |
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neuro immunopathology and sensation returning:
I had intense skin pain yesterday. Much burning, pricking sensation. Took extra M 25, this calmed it down. Getting more electric shock sensation along my left side of my left thigh. This has been numb since 2002, after hysterectomy.
My finger tips have more sensation as well. I have a less tolerance to pain in general all over all of my body. I am feeling sensation more everywhere. Almost as if I had been numb before.
This whole process is just absolutely amazing. After 4 years of getting NO WHERE with Lyme treatment except ill, then drug induced hepatitis, this is saving my life. I know I have a long way to go yet, but at least I know that for everyday I do the MP, it is another day towards better health. This is for something, it is for the Brass ring on the merry go round. Only this case, a golden ring.
The MP has given me a second chance in life, with hopes of seeing my last child grow up. My health took a nasty turn during her pregnancy. She no longer has the fear of me dying. She slept wth me for so long of fear from this. My husband used to hate going into the bedroom to check on me of fear what he would find.
I had been ill for 14 years before the MP. The last 4, with 4 near death experiences before I started the MP. Now, we all know that as sick as I can get, it is under control and tolerable, and I am not going to die from the MP. The MP has improved my quality of life in just 16 months. I still may have to stay in the house, but there is a sense of quality that I have not had in years.
The better I feel, the more I see and understand just how ill my husband is getting. He of course, is in deniel. My 14 year old daughter has always had signs of the TH1. I suppose I gave her through pregnancy. Since Aug. of this year alone, she got a cold when started school. Then 5/6 weeks later, another cold with ear infection, 5/6 weeks later strep throat then a cold. This June, she went to the beach with friends for 3 hours, it took her 3 weeks to recover from the sun exposure.
For so many years I had to prove to my family that I was REALLY sick. That it was not just "in my head". Now I struggle to show them what is going on with their health. At least I know when the time comes that they accept it, the MP will be there for them. I have a 29 year old who suffers from migraine. She is always not feeling well. Last year, she had 8 kidney stones, 5 on one side and 3 on the other. My 26 year old has constant colds, now she is on her 3rd ABX for a sinus infection. This is all fustrating for me to watch, but this is all I can do. They thought I was crazy for years, now, I preach to them about what the MP can do for them. I suppose all in time.
Wishing everyone a VERY HEALTHY YEAR ahead. I know I have a long way to go on my journey through the MP, but it is SO WORTH it. As I have said before, I no longer feel like I am going to die, but, I am still far from "normal". The quality of life I have in my house is refreshing!
Take Care, Lori
January 2007:
I just had a wonderful night. I left the house and drove by myself to the mall. We live 5 minutes away. I was there for 2 hours!!!!! My lungs are burning, but I did not loose my voice!!!!! My MCS was in check tonight. My light issues were good as well. This is a first for me since I started the MP in Aug of 2005. I feel like baby steps, and growing up all over again. Forever grateful.
see also
LH1953/Lori:
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Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, Proventil inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
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LH1953
Member in Phase 3
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Posted: Tue Aug 28th, 2007 05:32 |
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I have been on the MP for 2 years. In this short time, I have seen so many changes. The MP site is constantly improving and growing to help our needs.
I for one am not able to do too much reading on the computer, as this is a trigger for me. In the past week, I have tolerated reading more so then usual, due to my need of adjusting ABX dosing.
It is AMAZING how much MORE specific info. there is, and "directions" to simplify the use of this MP site. The efforts of ALL involved with this continuous updated MP site is greatly appreciated.
I could not let ALL your hard work go unrecognized!
Forever grateful, Lori
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Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, Proventil inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
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LH1953
Member in Phase 3
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Posted: Thu Jan 17th, 2008 09:43 |
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Every month when something else is off, there is TOO much stress put on abnormal labs, and not how I have made progress. I am going to go by HOW I FEEL for the next few months. With all the new documents you have about kidney, etc. I will bring to my doc which will make her feel better.
BTW, is the best I have felt in 7 years. I know I am headed in the best direction then ever before. I have come a long way in the 2 1/2 years on the MP, with no success with any other treatments, the for the 4 years before the MP.
BTW, this has been the SAFEST TREATMENT I have been on.
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Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, Proventil inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
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Joyful
Foundation Staff
| Joined: | Sat Jun 9th, 2007 |
| Location: | USA |
| Posts: | 2256 |
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Posted: Fri Jan 18th, 2008 05:26 |
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Right on Lori.
Sometimes it just seems like all the testing causes more trouble.
I'm trying to decide if I should point out my significant hair loss to my HMO doctor in a couple of weeks. It would help him to justify more tests, but then I will have to live with his response to the test results. Quite the dilemma.
Good thing he does understand that this protocol is very safe. He didn't even get ruffled when the blood pressure went low. (He must have actually read the guidelines!)
Before the MP, I just couldn't justify trying any of the other Lyme protocols. Not only because of the cost and relapse rates, but because the high doses just didn't seem safe to me.
 I think we are in the right place to get well, my friend.
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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LH1953
Member in Phase 3
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Posted: Wed Sep 17th, 2008 07:25 |
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Posted: Mon Sep 15th, 2008 00:43
MUCH JOY!!!!!
My journey on the MP has been a long hard road, with rewards beyond my imagination. I have not been able to up my ABX very well in the past 3 years doing the MP. BUT I have progressed in a forward direction. My marathon is a work in progress. I am home most of the time, going out about once a week. I have a quality of life in the house.
Yesterday was my youngest daughters 16th birthday. We celebrated with a party for her. NEVER in my wildest dreams did I ever think I could have done what I experience last night. I took Benicar 40 mg every 4 hours and 20mg twice in between. I needed a total of about 10mg diazepam and 1 full fioricet (taking 1.25 diazepam as needed with 1/4 fioricet) for the duration. I am very medication sensitive, so I kept taking small doses as needed.
The party was at night, a plus for me! There was LOUD music, flashing lights, etc. I DANCED, room was dim so, no hat or Noirs. I felt like a real person for the first time in 10 years!!!!!
I adjusted my ABX, which helped, along with the diazepam and fioricet. For all of you doing the MP, HANG in THERE. I cannot tell you the joy I feel in my heart to have had such a memorable night with my family. I slept most of today, but am doing OK tonight.
It was just 2 1/2 years ago that she had her Bat Mitzvah. I was able to attend that, but was barely able to function, ( it took a week to recover). I am not that person any longer, nor the bed ridden one who first started the MP. As I have said in the past, for me I am superwomen, but still very far from normal. Never expecting to still be here at all. I was waking up each day waiting to die, now knowing I am going to live.
Words are not enough to express what I feel the MP has given to me. All my love to all of you who have made this possible, OX, LoriLast edited on Wed Sep 17th, 2008 07:27 by LH1953
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Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, Proventil inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
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LH1953
Member in Phase 3
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Posted: Sun Oct 12th, 2008 03:21 |
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Posted: Sat Oct 11th, 2008 20:18
Thanks MP!!!!!
I have spent this past week being the care giver for my husband. This is a switch. He developed severe swelling and intense pain in his right knee, leaving him unable to care for himself. I have been taking him to ER, several doctors and labs for tests.
It has been hard, BUT I have had the ability to do this!!!!! I have been driving every day, doing the food shopping etc. I almost feel like a "normal" person, doing everyday activities. EXCEPT, my MCS, Asthma has been a challenge. Brain fog does set in upon exposures, BUT nothing as intense as the old days. I stop and rest, and recover within 10 minutes.
The supermarkets here all have fragrant decorations for the holidays, this is very offensive for my MCS. OH well, it is that time of year.
Six months ago I could have NEVER done what needed to be accomplished this past week. I still am able to tolerate only TINY doses of ABX, so if you think only high ABX doses are need for MP progress, think again.
Always forever grateful, LoriLast edited on Sun Oct 12th, 2008 03:23 by LH1953
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Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, Proventil inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
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Dr Trevor Marshall
Foundation Staff
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Posted: Sun Oct 12th, 2008 03:23 |
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LH1953
Member in Phase 3
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Posted: Fri Feb 6th, 2009 22:14 |
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The MP has changed my life in ways that I never thought could be possible.
My second chance, my "do over" is still a long hard journey.
To all of you who think you can't do another step on the MP, let me remind you that I was bed ridden, sleeping 18 hours a day, unable to have any quality of life before the MP.
It has been 3 quick years of only being able to tolerate tiny doses of ABX, but my strides have been incredible!!!!!
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Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, Proventil inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
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LH1953
Member in Phase 3
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Posted: Sat Mar 6th, 2010 16:07 |
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The year was 2005, I was in desperate search for a cure for my failing heath. I was bed ridden, barely able to walk. My bed was now an adjustable one, left upright at almost a 90 degree angle. Breathing was an effort, I was sleeping 18 to 20 hours a day. I had drug induced hepatitis from my last IV treatment for Chronic Lyme Disease for 13 months. My bladder disease, Interstitial Cystitis (IC) would wake me every 1 to 2 hours to void. I had urgency, pain and frequency, and was on 4 medications for that. My Ulcerative Colitis (UC) was constantly dehydrating me, and requiring several ER visits for IV hydration. My Multiple Chemical Sensitivity (MCS) would exacerbate my Asthma. Oh, I almost forgot Reflux Disease, Hypothyroid and Carpel Tunnel both wrists, worse on left. I had a colonoscopy 4 times in one year, endoscopy. You name the test, and I had it. H pylori in 2003 requiring 11 day stay in the hospital, with blood transfusion. As well as osteopenia, 4 cervical and 2 lumber herniated discs. I was on 12 medications, wearing an air purifier around my neck 24/7 to help breathe. I wore 2 hand braces and neck brace to sleep, which sleeping was in an almost complete upright position. There, I think I covered mostly everything!
My cognitive skills were extremely poor, but I was determined to find help. Doctors just did not know what else to do for me. So, I turned to the computer and looked up Igenex Lab. This is where my Lyme titer finally showed positive, after 10 long years without a diagnosis. I did not even fit the CDC positive for Lyme, but my doctor was comfortable to treat, due to my extensive symptoms. There was a post from a women from Canada who was still trying to find a LLMD, but was doing the Marshall Protocol in the mean time, and was starting to feel better. THAT is how I stumbled onto the MP site.
It took me 6 to 8 hours a day, for one week to read the site. I was determined to get through the info. so I could understand what I needed to do, in order to present it to my doctor. I was SO overwhelmed and VERY excited at the same time. This was the first place that TRULY understood my medical condition, I knew I was in the right place.
It was around my birthday, in August, and I thought, what a wonderful gift this had been. I remember taking my first Benicar. I was scared out of my mind as to what would happen. I never did well with most medications. This was going to be interesting!
My journey on the MP has been 5 very quick years now. I have stated this before in my progress reports, for ME, I am superwomen, still far from the norm, BUT forever grateful for this very special gift of the MP!!!!! I have my bad days, which are nothing like the old days. I focus on the easier, good days to help me get through the hard ones. Unfortunately my MCS/Asthma can turn on a dime, BUT I recover faster now and the pain in my lung are easier. The MP is a lifestyle for me. My inability to up the antibiotics are nil, BUT I have come such a long way!!!!! Here is a list of my improvements:
I would say that about 2 1/2 years into MP, I started to feel much easier. The 4 years under conventional Lyme treat, showed no improvement.
3 months into MP, colonoscopy showed no inflammation. Pre MP I could not even go to the store up the street without barely making it home in time. My colon has always dictated how I have been able to do the MP. I get rectal bleeding if I try to up the ABX.
8 months into MP was off 4 meds for the IC. I manage well with the Benicar. I have also used an acid reducing supplement for the past 10 years which I still need. I used to void every 20 minutes pre MP. I can now hold for 2 hours.
1 year into MP was off thyroid med. 4 years into MP and my thyroid nodules are GONE!!!!!
6 months into MP, walking was improving. I was able to bend my knees for the 1st time in 4 years. They still remain on the weak side, but I can walk well now. Might not be the fastest thing out there, but hey, its a gift. I can slowly go upstairs and come down one step at a time. Pre MP, stairs were not an option.
I am able to lift my left arm over my right shoulder, this was not possible before MP.
Muscle and Joint pain good till I eat carbs, then feel weaker, but am SO much better then before MP.
Terrible pain, swelling in lungs good, till MCS exposure. I can breathe much easier and sleep at a 45 degree angle now. Off of 3 inhalers and oral meds for Asthma 2 years into MP. Still need 1 inhaler 4 times a day. I had not needed a nebulizer for 4 years, till older daughter stayed with me a while back. Used that about 9 times in the past 3 months, but getting back to baseline before she came with constant MCS exposure.
2 year on MP and NO need for air purifier after 5 years of wearing it around neck.
2 years into MP and able to wear a bra, could not take the pressure on chest pre MP.
No more chills and bug crawling sensation about 2 years into MP. This was a BIG issue for years.
No more fevers and rashes from antibiotics.
The severe pain I had in my neck and left shoulder are just about gone. All along I thought it was due to 4 cervical disc problems. This always baffled docs cause my pain was on the left, but my disc problems were on the right side. Hummm
2002 during a neuro exam, the doc took a house key to the bottom of my feet. My right one was fine, but the left one felt like he cut me with a knife. This sensation lasted constantly till about 3 years on MP.
My left leg would "twitch" for years when lying in bed, this resolved about 2 years on MP.
My left leg, upper left thigh was numb after hysterectomy surgery in 2002. Doc was puzzled as to why. This lasted till about 2 years on MP. I started to get tingling sensation there, then 3 years MP numbness resolved. Now it is just tender to touch this area.
Keratosis on face keeps getting smaller and smaller. These spots kept growing and growing pre MP. Left side of face, and at the corner of both eyebrows, nose area. Also had a mole with hair growing from it on face since I was a child, the hair still grows, but the brown color is gone.
My tongue used to hurt all the time, burn, tingling, ached. Docs thought it was odd cause they did not see anything upon exam. This too resolved between 2/3 years on MP.
VERY INTERESTING: I had in the middle of my chest my whole life this hard substance about the size of a small pea under my skin. About 6 months ago I asked the derm doc to remove it. The "thing" started to push itself up to the surface and when touched, it hurt and felt sharp. Well, it was a small piece of bone!!!!!
I can shower during the day. When I started the MP, I was so weak and light sensitive that I could only shower at night with a 4 watt bulb. This was 4 years into MP. Sounds crazy to list this, but it is huge for me. I also can shower every other day. This process used to totally exhaust me. Oh yes, I can HOLD a hair dryer, 4 years into MP.
I can eat a bowl of past without falling into a catatonic sleep for 2 hours, 2 years into MP My food intolerance's improved greatly as well.
I have a short term memory, until I have a MCS exposure. Then I get fuzzy till it passes.
I used to bump into walls, fall off of chairs, could not walk a straight line, this took about 2 years into MP
3 years into MP when I started to do the MP differently, not up ABX, decided to live with the MP, my fatigue improved. Sleeping 12 hours. Now, sleep 8 hours with 1 nap during some part of the day 1 or 2 hours depending how much wrong food I eat or outing.
3 years into MP, I can drive!!!!! I do need 1/4 of diazepam for neuro stimulation (cars moving across intersections) Pre MP I did not know what to do at an intersection, could not handle the 6 lanes of traffic here. Right on red, 2 left turn lanes 2/3 lanes of straight traffic. Was too overwhelming.
I can do laundry and dishes, cooking. NOT everyday. Do need to rest, but hey, that's OK.
MCS has improve, I used to take weeks to recover from going out. Then it turned to days, now hours or usually minutes. This depends where I am in the antibiotic cycle. I have found that 1/4 (1.25) diazepam helps with the MCS symptoms. My improvements have been so great with this issue, but still remains a big problem for me. I can only hope that one day this too will get to a level of being more normal. MCS since the mold exposure at my old job 9 years ago REALLY depletes me. I get short of breath, fuzzy in the brain, word retrieval becomes difficult, fatigued, pain in lungs, swelling in ears and throat. If I am out myself, have to wait about 10 minutes in car before I can drive to function OK. Sometimes I can get sick from the car into the store and have to rest inside till it passes, again about 10 minutes.
I can use a computer!!!!! I could not even understand how to turn one on pre MP.
I used to drive Aussie Barb crazy, I never could understand anything! She is my ROCK, she has always been there for me. When I started Zith, I could not understand how it was taken. Could not understand how to use the web site. Still drive her nuts from time to time. LOL THANKS Aussie Barb!!!!!
Light issues improved. I would faint if exposed to light for the first 2 years on the MP I still have my house darkened, but do not need Noirs on. I do need them for outside, but have to take them off to find the dogs poop. HaHa. I remember sending back the 40% Noirs saying I will never be able to wear them. Well, about 8 months ago, I use them at computer. Still wear 2% for TV. Commercial can still make me crazy especially fast moving cars. Don't watch too much TV or do too much on computer, but getting easier. Again, 1.25 diazepam helps with this.
I have been typing for 2 1/2 hour now, yes I'm slow, but I CAN DO IT!!!!!!!!!!!!!!!!!
Have had enough, tired. LOVE you all here on the MP. You are my family. Here is where I feel I FIT in.
Dr. Marshall, Staff, ALL of you involved with the MP. I thank you from the bottom of my heart for giving me back a quality of life in the house. I go out about 1 or 2 times a week. Someday I hope to get the MCS in a better place, I have come from waiting to die to waking up each day ready to live.
As always, Wellness to all, Big OX, Lori
Last edited on Sat Mar 6th, 2010 17:13 by LH1953
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Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, Proventil inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
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Deedee
Member in Phase 2
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Posted: Sun Mar 7th, 2010 00:57 |
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| Very nice post. Thank you.
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Sarc in lymph nodes. D14. Back to Phase I, 100 mino Benicar 4X/day. Lipids high. 7/07 check-up: Normal PFTs/CXR improved; Quecentin/guaifensin if lymph nodes hurt. Spleen pains. Began MP 8/08
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Sallie Q
Member in Phase 3
| Joined: | Mon Jan 26th, 2009 |
| Location: | Australia |
| Posts: | 103 |
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Posted: Sun Mar 7th, 2010 03:36 |
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WW Lori
you are an inspiration
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stress57-83 b.cancer1990 20yrHotFlush SjogrensCFS 60%dysreg.vD 13.2 Sep08ph1 JanModPh2 May09Ph3 : 1,25D 30pg/mL Feb2010: 25D Jan5ng/mL lowLux must wear NoIR
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LH1953
Member in Phase 3
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Posted: Sun Mar 7th, 2010 06:01 |
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Actually, the MP is the inspiration.
It took me a long time to figure out that I was not going to be able to get through the MP so to speak. I had some really bad years trying to progress with the antibiotics. Everyone is different. For ME, I came to realize that the MP was going to be a way of life. After extremely painful organ issues, I decided to just coast where I am now. This has worked for me and has proven to get me relief and tolerable IP's.
Yes, some ABX cycles are harder then others, much easier then past IP's. Every cycle is different, sometimes it my lungs, or bladder, kidneys, intestines or neuro. Always a surprise. Never have strong IP with more then one issue at a time which is funny. It's as if the body knows MY limits of pain. LOL
Wellness to All, Lori
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Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, Proventil inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
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Deedee
Member in Phase 2
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Posted: Sun Mar 7th, 2010 14:16 |
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| Lori, I am having trouble getting into Phase II and have been advised not to rush to 3 antibiotics. I can't even rush to two (LOL), but I am progressing. Do you might sharing what you ended up staying with?
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Sarc in lymph nodes. D14. Back to Phase I, 100 mino Benicar 4X/day. Lipids high. 7/07 check-up: Normal PFTs/CXR improved; Quecentin/guaifensin if lymph nodes hurt. Spleen pains. Began MP 8/08
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BARNEY
Moderator
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Posted: Sun Mar 7th, 2010 15:38 |
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DeeDee,
You should not have a problem getting into Phase 2/3........it is open to anyone.
Try this link....(Phase 1 page 2)
http://AutoimmunityResearch.org/phase1.pdf
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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Deedee
Member in Phase 2
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Posted: Sun Mar 7th, 2010 16:55 |
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| Thanks Barney....I don't have trouble accessing info. Sorry I was not clear. I am having trouble tolerating Phase II.
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Sarc in lymph nodes. D14. Back to Phase I, 100 mino Benicar 4X/day. Lipids high. 7/07 check-up: Normal PFTs/CXR improved; Quecentin/guaifensin if lymph nodes hurt. Spleen pains. Began MP 8/08
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LH1953
Member in Phase 3
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Posted: Sun Mar 7th, 2010 17:44 |
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Dee, My body could not tolerate even the starting doses of what the MP guidelines called for. It took me almost 2 years to figure this out. Remember, we are a study group and back 5 years ago, no I just realized, it has been 5 years and 7 months. Time flies! Anyway, we were trying to get through to the next level of antibiotics, get through the MP for complete recovery.
I finally came to realize that for ME, there was no way this was going to be possible for now. One has to learn that the MP might be a constant adjustment of the ABX if symptoms are not tolerable. We have this headset of needing things to stay the same, change is hard. I had to actually force myself to LISTEN to what my body was telling me and not ignore my pain, or think I could work through it. After all, I wanted to be well again.
For me, I needed to rock my doses, then I tried skipping the 3rd abx in some parts of the cycle, I have also tried extending the cycle by 2 days in order to be able to take the 3rd ABX twice in the cycle. Recently did this for 3 months, then went back to the 10 day cycle, and only added the 3rd ABX in once. Now I know that extended cycle was not working well for me, cause I felt worse. So, as you can see. I have tried many things.
It was driving in the car to do banking one day with hubby, when the intestine pain was so bad for days, I had continuous spasms, my hubby turned to me and said, " I love you very much, but I can't watch this anymore. If you took your own life, I would understand" I would tell him that I just wanted to die from the pain. It was getting to me. THAT's when I decided to stop trying to kill these little buggers. I could not go on with intolerable IP. THAT of which the MP has always told us to keep things MANAGBLE AND TOLERABLE. Duh, shame on me. I came to realize that the MP had to be a way of life for me.
NOW, about 2 years ago, it is sooooo much better. IP's are subtle, I can function better, easier. For me, I am progressing on the MP with tiny ABX doses cause that is all I can tolerate. When I get brave and take a smidge more, BANG something gets hit too hard. Then I say, OK, still not ready yet.
Everyone has different lifestyles they need to consider, as to why things work for one person and not another. We have different symptoms, tolerance levels. Different stresses our lives.
I have a need to help people, this has always been important in my life. I always cared what other people thought. Needed to be perfect. Then I got very sick and I needed to survive! Now, I don't care what anyone thinks. My 2 older children, 30 and 33 have a very difficult time with my illness. They don't want to deal with the crazy women, but everyone else see me in a different light. I used to cry over the lack of a relationship I had with them, cause I so desperately wanted it. Now, I embrace my hubby and 17 year old who live with me, and have to put up with: darkened house, change their clothes when they come home, can't get in my inner space due to MCS/Asthma issues, NO gum chewing (HaHa they hated that) made me so sick for some reason. I finally found a very mild scented deodorant my 17 yr old can use for the first time. She is thrilled. No scented anything in the house.
Extended family keep asking me, when are you going to get done with the MP? I say,"Am I getting better, does it really matter?" I focus on getting better, not striving for a cure. THAT is how I do the MP. My 17 year old grads this spring. I am here to see it! It will be a challenge. I am forever grateful for the MP.
Wellness to All, Lori
Last edited on Sun Mar 7th, 2010 17:52 by LH1953
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Lyme, MCS, IC, asthma, reflux, UC, osteopenia, hypothy, EBV, 1,25D48, MP 8/05, Proventil inhaler, PBX, diazepam, fioricet, Ph3 7/06, NoIRs, limited outings covered up, low lux home, 25D4, 1,25D24
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Deedee
Member in Phase 2
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Posted: Sun Mar 7th, 2010 19:30 |
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Thanks for your detailed reply. I agree it helps, not only in the MP but in life, not to be too full of expectations or to be too rigid. I had to give up a relationship with my daughter, who has severe behavioral issues, when I became ill. It grieves me that I can not have a relationship with her, but I have to accept and let go. Who knows what the future might hold in regard to our relationships with our children?
I also gave up the full time plus job I was doing as a mental health advocate for children and young people and totally dropped out of the whole drama beating that dead horse. The only thing that was changing in North Carolina in spite of all of my efforts and the efforts of like-minded people is that we were consumed in trying to change a system that is not going to change for the better, and in the process heaping tons of additional stress on ourselves. Between the advocacy efforts and trying to help my daughter, the only change was that my health was deteriorating. Then I found out I had sarcoidosis. Time to let go and live.
We have to do what we need to do to stay as healthy as possible. Right now I have to focus on being well. The last year and a half on the MP has brought many improvements, and like you I am focusing on the people who love me back and rebuilding the relationships with my husband and other two children. Yes, life is full of suffering but also full of joy---sometimes happening all at the same time.
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Sarc in lymph nodes. D14. Back to Phase I, 100 mino Benicar 4X/day. Lipids high. 7/07 check-up: Normal PFTs/CXR improved; Quecentin/guaifensin if lymph nodes hurt. Spleen pains. Began MP 8/08
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