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carol
Member Advocate
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Posted: Sat Jul 21st, 2007 18:46 |
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Dear Friends:
I am back at beautiful Bryce Canyon. Days have been busy and I am managing very well. How can I explain my situation these last few weeks? A wonderful combination of more activity, less pain and more effortless ramping of Phase 3 antibiotics. I AM THRILLED.
Before reaching Bryce we were touring out west: Yosemite, Reno, central Utah. So of course it was REALLY HOT. I was pleased at how normal my response to the heat was. Of course I got hot, but I was not debilitated by the heat, even when it hit triple digits. I just kept going, like a normal person. Last year I absolutely could not have done this. It would have been unbearable. (In contrast, at 8000ft, Bryce is wonderfully cool….smoky, but cool.)
I have noted that I need less sleep.
I find that as my over-all “symptomology” deceases I can tune in to what the different palliative meds are doing--the anti-inflammatory effect of the celebrex in contrast to the pain killing effect of the vicodin. I am using them most effectively and at lower doses.
These days I can confidently tell the difference between the immunopathological aches and pains that results from killing the cwd bacteria and the discomfort associated with my RA damaged joints. I have the sense that my joints and muscles are working to “rebuild” now. A modest amount of physical activity helps this process but too much is still detrimental. It is easy to “overdo”.
A curious thing has happened. The better I feel physically, the more emotionally labile I become. This all came to a head for me several weeks ago when we were at Yosemite. Phil and I decided that a beautiful little high country lake would be a good place for my first outing in our new two person open kayak.
Bad idea! As soon as we were on the water I realized that the elevation was making me short of breath and the brisk wind made the paddling more difficult than I thought it would be. I was scared (even tho I had on my PFD). If I ended up in the water, could I even hang onto the boat??? The worst part came when we reached the shore and I could not get out of the kayak! I felt like I was sitting in a bucket on the floor. I had too little strength and too much pain to get myself up and out. My husband finally pulled me out of the kayak with great difficulty, made worse by the fact that by this time I was crying like a baby! In fact I cried off an on for several days.
A year ago I could not have even considered kayaking. So why did this episode upset me so much? All I can figure is that now that I am getting well, really getting well, I can admit to myself how sick I have been and how much I have lost. I had to give up my professional life at the peak of my earning years. My husband and I used to take cross-country bike rides together. One was called The Hilly Hundred. I used to feel better when I got off my bike than I did when I got on it. It was so much fun!
Is this how I protected myself emotionally all these years? I simply didn’t think about my predicament. I just went from bed-to-couch and couch-to-bed. Now that I‘m getting well, I am indulging in the luxury of grieving.
I don’t want to sound like a whiner! There are people here much sicker than me. I’m hoping that sharing these feelings will help someone else who finds themselves in this place. I also would sincerely welcome any discussion that would help me understand this better myself.
And don’t forget how this post started. I’m getting well  .
And, for you new kids here, take special note of how long this has taken. My three year anniversary on the MP is just a few weeks away. The MP is the definition of Delayed Gratification.
Best wishes to all,
Carol
August 07:
It wasn’t until I started really getting well that I could admit to myself how really sick I had been and how bad I had felt during the first two years on the MP. I can see now that the denial was a powerful means of protecting myself so I could keep going.
I’m feeling so much better and am able to do things I haven’t been able to attempt in a very long time. But my body has been ravaged by years of illness and inactivity. There’s this “yuk” factor associated with contemplating this body with the wasted muscles, the extra pounds and the damaged joints. I have to accept that repair will take time.
As I started to feel better, I had had a tendency to use my new found energy to take care of things close at hand that were in desperate need of attention, like insurance paperwork and household matters. It took a while to figure out that this was making me feel angry and resentful and to do something about it.
My illness and my time on the MP has had an impact on my relationship with my husband. He has always been tremendously supportive, but as I got sicker and sicker, he became accustomed to doing many things without me. I know he is happy to see me “coming back“, but nonetheless, this change in circumstances has presented some interesting challenges.
Isn't it great that this is the kind of stuff we have to deal with these days ?
Best wishes,
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Aussie Barb
Research Team
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Posted: Sat Jul 21st, 2007 20:12 |
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Thank you Carol
Wonderful news.. A natural part of the healing is testing the boundaries, and grieving, and processing, and re-evaluating, just as you are doing..
You are doing so well. Thank you. all best for more adventures.. Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Martha
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Posted: Sun Jul 22nd, 2007 19:44 |
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Hi Carol,
I'm glad you made it to beautiful Bryce. I always forget the elevation there being so much higher. It sure makes a difference in the temperature.
I can so relate to what you said about grieving time that you've lost. People ask me all the time "what are you going to do?" (people not on the protocol of course) as far as my plan of action, etc. Even those with scleroderma have asked me for years when I was on AP and it wasn't helping that much-what was I going to do next. I just don't go there. If I did, I would curl up in a little ball and literally die. I live in denial daily and just take it hour by hour. People who aren't chronically ill can't even remotely relate. Our marriage sounds like yours in that alot of the enjoyment we had as a couple was the outdoor thing. I feel so sorry for my husband because he has put much of that on hold as well. I try to encourage him to get into some clubs with like minded people, but he doesn't seem to want to for some reason.
I'm so encouraged and happy for you that you are steadily improving. Keep up the good work!
Martha
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Scleroderma resumed MP Feb07 after 2 yr hiatus due to pregnancy D2512 & D12545 NoIRS D25-8 (Sep07) Ph2Feb08
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Aunt Diana
Member Advocate
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Posted: Mon Jul 23rd, 2007 03:44 |
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Carol,
your post and your progress is "music to my ears"....I can feel it already. I can only remember back to the days before MP and no such hope could be even considered. Three years is chicken feed compared to spending the rest of your life unhindered.
BRAVO!! and to your supportive husband as well....BRAVO!!!!
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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, lorazapam, benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux. Feb 08 Phase 3. 6/08 D <4, D1,25 21
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sue from Indy
Member in Phase 3
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Posted: Mon Jul 23rd, 2007 08:26 |
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Carol,
I'm so happy for you! This is such good news. Now maybe you can really enjoy all the wonderful places that you go.
Your friend, Sue
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Sarcoidosis/skin, lungs, joints, MPh1 7/05, Ph2 11/05, Mod Ph2 8/06, Ph312/06, NoIRs, 1.25D =8 Oct08
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Jeannine R.N.
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Posted: Mon Jul 23rd, 2007 08:54 |
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Carol,
For some reason you are one the of MPers I think of often...I am so glad to hear about your healing...It is post like these that keep us all going! It will be great to watch as you heal even more!
Hugs, Jeannine
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CFS FM Lyme Morgellon's 125D49 Ph1Aug06 25D <4(april 08)Prozac Valium Aleve ModPh2May07 Ph2Apr08 NoIRs limited outings covered lo lux home
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carol
Member Advocate
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Posted: Tue Jul 24th, 2007 02:18 |
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Thanks All:
Aunt Diana, of course you are right. The time required is a relative thing. And in any case, it is what it is...3 years, 10 years.
Martha, so Denial ain't just a river in Egypt??? I guess it can be our friend  .
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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barbski
Member in Phase 2
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Posted: Tue Jul 24th, 2007 14:16 |
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Hi Carol,
Thanks, as ever for posting your progress reports, which are so clear and concise and useful.
You said: A year ago I could not have even considered kayaking. So why did this episode upset me so much? All I can figure is that now that I am getting well, really getting well, I can admit to myself how sick I have been and how much I have lost.
I've had a similar experience myself a couple of times lately, albeit at a lower activity level. And I've come to the conclusion that the exhilaration of doing something that I've not been able to do for several years sets me on an emotional see-saw that goes back and forth for a long while before it gets back to equilibrium.
I think also that undertaking an activity we've not done in ages takes more exertion than we perhaps we give ourselves credit for. Add those elements to the realisation of how sick we are/have been, and the associated grief, and it's a combustible mix.
I look forward to hearing of your next kayaking experience - I've a hunch it will be nothing like as stressful. Hope not, anyway
Barb
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CFS Lyme 125D50 Ph1Aug05 Ph2Apr06 brk Nov06-Jan07 ModPh2May07 Ph2May08 Nexium TR sodium zolpidem salbutamol magnesium citrate 25D (May05) NoIRs limited outings covered
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carol
Member Advocate
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Posted: Tue Jul 24th, 2007 15:40 |
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barbski wrote: I think also that undertaking an activity we've not done in ages takes more exertion than we perhaps we give ourselves credit for.
Thanks, Barb:
I keep forgetting this myself. Even if my health was totally restored, I couldn't expect to jump in that kayak and not feel the effects of three years of my forced sedentary lifestyle. Plus I never even kayaked before! Just a little canoeing. My sweet daughter is a sea kayaking instructor for the National Outdoor Leadership School. Maybe I thought since I gave birth to someone with this talent she inherited it from me .
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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KFaucher
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Posted: Tue Jul 24th, 2007 22:03 |
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Carol, first time kayaking is tough on anyone. The first time out for a new season can be tough even for experienced kayakers. The muscles you use paddling just don't normally get much use. And sitting like that can be tough on the legs. Being nervous makes everything all that much worse.
A few tips: Small steps, Just like with meds, increased or new activity needs to be taken in smal steps; Get comfortable with the boat, practice getting in and out and even flip it over (near the launch) and experience what it is like to be in the water with the pfd and a flipped boat, inot only will it ease your fears, it can also be fun; Try to get out in shallow water so you can swing your legs over and stand up as if from a chair, rather than onto dry land which is above your butt and very difficult to do; Bring dry clothes so you can change after falling down while trying to get out . (Yes I have done that)
All that is assuming you can get your husband to try it again!
Glad your doing well, Ken
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Deb L
Member in Phase 3
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Posted: Fri Jul 27th, 2007 19:04 |
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Hi Carol,
Also the change in elevation takes much time to adjust too. I was in Equador years ago got up somewhat dixxly the next morning and stupidly went for a run...big mistake.
Corgrats on your bravery for trying and bless your fella for getting you out and in.
I myself have been doing a far amount of grieving of late as I become sicker, or actually realize how sick I have become, the steriods when not only masking the symtoms but my feelings of lose and hardships. Their are 7 stages of grief and they come when we are ready.
Bless you and keep paddling, were all in the same boat!!!
Deb L.
Yukon
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RA Ph1Oct06 ModPh2Nov06 Ph2Feb06 Ph3Jan07 25D27.6(Jan07) D2518(May07) 25D22.5(Dec07) clonazepam magnesium Advil Noirs
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carol
Member Advocate
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Posted: Mon Aug 6th, 2007 01:21 |
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The good days keep on coming. I can’t remember when I’ve had such a low level of joint pain. The second half of the cycle is particularly good. The only notable IP symptom this cycle has been fatigue that comes on the day after the meds dosing. After a nice nap I wake up feeling good.
I continue to do more and more walking. I am encouraged by how good my ankles, knees and hips feel afterwards, even with uneven terrain and elevation changes. I take this as an indication that I have avoided permanent damage to these big joints.
When we sold our home and started RV-ing in January 2005, I gave away my hiking boots. Optimist Carol figured by the time she was ready to hike again there would be new technology available and she’d just get herself some new boots. Pessimist Carol figured she’d never need hiking boots again.
I’m ready for those boots  .
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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marion villa
Member in Phase 3
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Posted: Mon Aug 6th, 2007 01:42 |
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Carol:
You can't imagine how good is hearing all you say!!
I'm crying!! pure happiness for you and us. I see now that the dream is a possible goal
keep healing
marion
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 /20 april 2008, 25D<4ng, ph 3/ 22 oct 2008.
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carol
Member Advocate
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Posted: Thu Aug 23rd, 2007 21:33 |
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Yesterday was the first day in almost 2 weeks that I decided not to walk…just a little too much IP to make it appealing. IP symptoms are roaring tinnitus, low-level headache, muscle cramps/soreness that comes and goes, scratchy-feeling eyes (no noticeable light sensitivity). I also have had periods with unusually red cheeks and an odd stinging/burning feeling in the back of my throat.
I’m still feeling much more well than sick these days. The balance has definitely shifted. There’s enough IP to remind me that I’m killing CWD bacteria, but I make only modest concessions in my daily activities because of this.
I am taking much less palliative medication. For years, probably 2 years pre-MP and for the first 2.5 years on the MP, I took 200mg Celebrex twice daily along with 4 or 5 Vicodin daily. Now I take 1 or 2 Celebrex a WEEK and 1 to 3 Vicodin each day. I could probably stop the Vicodin all together at this point, but it definitely makes it easier for me to be out and about on busy days and more comfortable for me to exercise. At this point in my recovery, I feel this is beneficial. I love that I can feel and see my muscles getting stronger and I want to be as active as I can.
If what I read in the popular press is correct, Vicodin is one of those drugs with high potential for abuse. All I know for sure is my own experience, which is this: when I have less pain, I have no desire to take this medication, even though I have taken it for years. If my recovery continues at its current rate, I feel I will not be taking any Vicodin a year from now.
Best wishes to All on our journey to recovery,
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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Big John
Member
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Posted: Fri Aug 24th, 2007 01:07 |
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Hi Carol! Seems like just yesterday we had just started kicking bug butt.. I'm so glad your quality of life has improved. I follow your posts with great admiration. Next year I plan on hiking the trails once again. I will however, leave the Kayaking to you.. Enjoy the rest of your summer at Bryce. Keep smiling! John
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Reiters Syndrome, Benicar 9/23/04. Mdx: Sotolol, atenolol, spironolactone, amlodipine,alprazolam, lexapro, Benicar q8. Ph2 12/05. Ph3 5/06
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carol
Member Advocate
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Posted: Tue Sep 25th, 2007 00:14 |
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Dear Friends:
I had occasion to re-read something I wrote in one of my posts on this thread back in June:
“As I write this we are on our way back to Bryce Canyon, Utah. I’m thinking about the beautiful Rim Trail. Parts are paved and level and very accessible. You can walk a few hundred yards or a mile or so. It’s not exactly hiking, but it‘s a start and I believe I can do it.”
I want to report that my physical improvement has exceeded my expectations dramatically ! It been three months since I wrote that, but I have long ago graduated from the paved parts of the Rim Trail where the tour buses stop. Yesterday Phil and I hiked over 4 miles along the Bryce Rim. The trail started at an elevation of 8300ft and descending about 600 ft total. I have also achieved my goal of hiking to the floor of the canyon, only 2 miles round trip, but 320 ft down and 320 ft back up. Parts of this trail are very narrow with a number of switchbacks. Both of these hikes were comfortably within my current capability. I was glad to sit down when I was done but felt fine after a little rest and had no negative effects the next day. I am using hiking poles, which are popular with many hikers here. They help tremendously on steep ascents/descents with loose stones, given that my muscles are still weak from several years of inactivity and my joints have been damaged from even more years of RA. However, this level of exertion feels restorative and therapeutic.
I am thrilled with my progress. It was worth waiting for.
Carol
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rheumatoid arthritis dx '96...started MP 8/11/04...initial D tests (7/11/04): 25-D=32; 1,25-D=65...phase 2 started 12/6/04...phase 3 started 2/26/06...vicodin & valium as needed for pain...last 25-D=9 (5/08)
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SherryH
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Posted: Tue Sep 25th, 2007 00:39 |
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| Awesome, Carol! And astounding and SO inspirational! Very happy for you and love that you share this news with us. Keep moving on.......Thanks....Sherry
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Pacemaker 2001: sinus node exit block; subcutaneous lumps; acid reflux; thyroiditis; neck pain| 6/06-125D/25D: 82/25; 9/07 25D: <4 8/1/06 reduce D, NOIRS, pepcid; 9/29/06 Beni 10/14/06 PhI; ModPh2 3/07
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KFaucher
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Posted: Wed Sep 26th, 2007 00:09 |
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carol wrote: I was glad to sit down when I was done but felt fine after a little rest and had no negative effects the next day.
No negative effects the next day! Isn't that a wonderful improvement?!! It is so much easier to do things when you don't have to plan a couple days of down time. I am really happy things are going so well.
Ken
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Martha
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Posted: Fri Sep 28th, 2007 22:55 |
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Hi Carol,
I have to tell everyone that I finally got to meet you in person this week and to see how well you are doing now that you are coming up on your 3 year MP anniversary. Lem, Nicky and I had such a great time visiting you and Phil at Bryce Canyon and want to thank you for your kind hospitality while we stayed there and also giving me the MP DVD's to help me understand MP even better.
I hadn't met you in person prior to this occasion and hadn't seen you "sick" but I can say without a doubt that you looked wonderful to me. Your face glowed that glow that people have when they feel good. I look at me on a "good day" post 7 month MP and say "mmmm, puffy taco face indeed" . I am looking forward to that day though when I can say-"not too bad for a woman who fought scleroderma thanks to the Marshall Protocol and won!!!"
Have a safe and blessed journey on eastward.
Martha
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Scleroderma resumed MP Feb07 after 2 yr hiatus due to pregnancy D2512 & D12545 NoIRS D25-8 (Sep07) Ph2Feb08
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marion villa
Member in Phase 3
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Posted: Sat Sep 29th, 2007 17:59 |
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carol: It is nice listening to those news!! also encouraging for me. tell me please. does the pain in your hands diminished? do you have more strenght to grab things?Are your eyes more moistened? I´m so hopeful, I´ll start as soon I receive the tests results, maybe next week
kises!!!
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 /20 april 2008, 25D<4ng, ph 3/ 22 oct 2008.
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