June 12, 2008 at 9:04 pm #300523
Dear all, I would like to call friends,
I am just so taken with your positiveness, and your support, and links, and hope and information, and I am just so happy to be somewhere that this is all available. It is such a rewarding site, and, and although I am looking for the magic bullet, I have learned from many previous disapointments, that I am programmed now for, naw, it'll never work, haha!! But listening to your banter, and your strong beliefs that it will work, I am starting to wonder why, on DAY TWO of my Minocyn, nothing is happening yet…TeeHee!!
I too am one big gluten, and I realized that going cold turkey wouldn't be helping me too much, I'm one of those gals that can go without food under stress, and living on the rice cakes, well, it wasn't happening for me. So… I am taking it alittle easier, I love my bread too, and cakes, and cookies, etc… but i have started just to remove them alittle bit at a time. cut down sort of. and I am keeping my own log of any reactions I think I might be having, or not!! It would certainly be ideal to work up to the gluten free, gluten free thing, I know I will get their, obviously if it's going to help me to get better in any capacity, I will go the route. I am certainly interested in any findings my new doctor will have on my next visit. These sure are tests that no other doctor or Rheumy has ever performed, I feel like a rebel, just walking away from the Rheumy's, and doctors, refusing to take the meds, and taking full responsibility for the directions I want to go in, I think what the scary part of all that is, if/ whe this AP works, my belief system will need a huge overhaul, and I will need to reavaluate everything I have been taught about the “good doctor”!
I just would like to thankyou all very much for being so supportive, my hope is slowly being restored, and maybe tentatively, but it just makes so much sense, and all the success stories, and your own testements, it's just wonderful to know that you are all here, dedicated to helping others, and spreading the word. How sad it is that in places all over the world, people are doing without, and I have made a promise to myself, that I will do whatever I can to pass this voice on, and spread the word, and the work of all that you do here. I don't really know what my road has in store for me, but I have to say, I am sort of excited about it, the possibility of betterness, in any capacity, well, it's more than anything I have been given in the last 8 years. Hearing words like remmission, and my nodules have disapeared, and I open the toothpaste, or use a can opener, I have more energy, the depression lifted, like am I in a dream???? One of my last doctors told me I should volunteer with the Arthritis society, so I can see what's coming to me, and perhaps learn to live life to the fullest before the inevitable happens. Like what kind of message is that to give to somebody who is so sick they cannot even defend themselves, and in her next breath she told me I would be in a wheelchair in about ten years, I've got apparently 41/2 good ones left, yeah, like they've been good alright, show be the brigde baby!! I feel it's abuse of some kind, really, hurting somebody psychologically, what hope do they leave you with, nothing but dispare, and hopelessness, and helplessness. I remember being devastated to learn of these things, and it didn't help start living it up I can tell you that… I just dove deeper into depression, and complied with everything they wanted to give me, well, the last straw was the Embrel. It is injected once a week, with a sort of epi-pen thing you do yourself at home. The lovely side effects, short term, becasue they don't know any of the long term ones yet, are, it causes lung cancer, TB, and of course, infections at the sites where you inject, and if you get sick on it, a cold, or something that requires antibiotics, you must stop the Embrel, or Humira, until you are better. I can truly say, that I don't care what happens, I think that after hooking up with The Road Back. Org, refusing to take it, was perhaps the second most important thing I have done this year. hahaha!!
Sorry this is so very long, I just feel happy to be learning about my disease from this different perspective, and a perspective, that does not ultimately blame me for being ill, but gives ones the tools they can use to better themselves, by simply reading and getting intune with your own body, It's really motivating, and I feel so much stronger than I did just a few days ago. I will put all my energy into making this work for me, I know it will not be easy, but we're pretty much used to that already, aren't we? So that's not a big surprise. And don't they say, that anything, worth having is work waiting for and fighting for! This makes this an ultimately different fight, who wants to fight to get into a wheelchair, taking methatrexate is one sure way to get there way ahead of your time. Hey, it only depletes your bone marrow, no biggie right, who cares anyways if your going to be lying flat on your *** anyways. And what a poweful message from John, simply stating that however I do the AP, I'm going to like it! Thankyou for that John, it's just so matter of fact that one can't help believeing that this is the only way to go!! After a slow start, I'm on it, for the long haul. And am looking forward to every step of the way, it's so nice to be an active participant in your disease. Not just some pin cusion.
Really, sorry for the long winded wind… I am wishing everybody continued improvements, and a pain free existence. I think you are all very brave, and rebels in your own right, and I am deligted to be getting involved. In just this short time, I feel stronger, I don't feel alone, I feel a chance, and a change in the wind, hope, that has not been present in my life for a very long time, and dare I say excitement…and why not, this could very well be the beginning of the rest of my life. Wishing you all sweet, and warm dreams, full of healing properties, and love, and kindness for yourself. Goodnight. Sleep well. Be Well
GlitterGirl:roll-laugh:June 19, 2008 at 9:41 pm #314412
Well, I have completed one week of taking the minocyn, and am on to week two. Things have not been going very well, been having big flares in the bones that have in the past(since taking methatrexate), not bothered me much, like my hips, spine, collar bone. The ones that always bother me, feet, hands, wrists, have become very active, and incredibly painful, and alot of very painful nodule activity, it's like, oh…another one just popped out, what a cutie!!!!!!! I have had to work, and it is becoming more and more difficult to do. I talked with my doctor today, he would like me to stop taking two minocyn, and take just the one, on Mon, Wed, and Fridays. He suggested I stopped altogether because I also have a very bad yeast infection, in my mouth and other. But I was not to keen on that, and we have agreed to go this route, with a prescription for diflucan. He is also alittle worried about the elbow that went septic a couple of years ago, it has flared, and is puffy, looks red, and is very, very painful, and I cannot straighten it. He see this as a bad sign, I do also, and would not like to repeat that incident ever again. So, I am off to see him tomorrow,and I will see what he has to say. I am depressed, what else is new, it seems to be a way of life for me, the weather here has been brutal, wet, and damp, and dark and grey,and I don't care what anybody says, the weather defo hurts me big time. I had a doctor tell me once that is wasn't scientifically proven, and I thought to myself, I can tell you when it's going to rain by the inflamation on my left knuckle, what better science is there than that!! So that has really been affecting me, it's rained every day this week and last, and I just feel the pressure in my bones, the constant aching, what a life!!
Some good news, I have managed to get in a couple of gluten free days, and am finding it alittle easier to find the gluten, egg free, dairy free… … …. like, hold me back, I'm on a roll, I found these rather exquisit blueberry waffles, with the above qualities, and I was like, right on, lets get busy, and then I realized, hold on a minute, what do you mean I can't have syrop, this is a big life change, no syrop?? It's almost too much to bare, hahahahahaha!!! I managed to eat them without the syrop, It wasn't as bad as I thought it was going to be, just…dryer, LOL!!!
On the whole, things are okay, I am trying to stay focused on taking care of myself, and learning about it as much as I can, I have found that that has alleviated alot of my feeling of hopelessness, and reading about others remissions has just put a fire under my ***!! I have a read of Lynnie_Sydneys new post, and wow, she is just inspirational, even alittle of the gluten is bothering her, and she has narrowed it down to soy that she used, that is just amazing to me, knowing your body that well, it is what I am striving for.
I have also come to realize, that I am my own worst enemy sometimes. If I am paying attention to my body, and I know that cereal is causing flares, why would I still eat it??? Well, I know the road isn't going to be easy, It has never been before, and I know it's not going to change, I am just glad to have put a foot on the road, and wherever it may take me, it's nice to know that I am not alone, that there is help along the way, and that I have taken positive action, for myself, and my disease, and I own it now, not some Rheumy, but me, and I am betting that If I don't get better, it's because I haven't stepped up to the plate like I should have, and I don't want to be sick anymore, I want my goddamn life back, every single facet of it, I don't want to be in pain anymore, I'm tired of feeling ugly, and crippled, I want to start having a life, laughing, being in love, walking without pain, or a crutch, and if there is one thing that I want more in this whole world, that motivates me beyond anything else, is I know the day will come, and when it does, I am going to build a big fire, and throw these ugly orthopedic black shoes into it, and dance with joy, nothing has broken my spirit more than having to wear these, and I would go to any lenghts to be rid of them forever!!!!!!
And then there is my darling son, my baby, his little chubby hands in mine, his trust, his love, for him I would go to the ends of the earth, and I just put my foot on the road that's going to take me there. I know it's going to be hard, but it's going to be worth it!!!!!!!!
I will keep myself posted, haha, and in my thoughts, I send painfree, warm healing thoughts through the airwaves, for everybody. Be Well,
GlitterGirlJune 26, 2008 at 5:29 am #314413
Week two, it's early, I know, am so depressed, just wondering about it all, have just read a really, really interesting article about mycoplasma, and the more you learn about them, the more you realize what your up against. I read this line”…with low cytopathogenicity, mycoplasma can remain attached to, and lay dormant in tissue cells for months without killing the cells as long the cells continue to shed nutrients”, kind of blows your brains out, did mine anyways, and they are sticky to boot!! F#**##*!!!:P!! What was good to read was that, it is a long process, and the longer one is on it, the better the results will be, it's not a quick fixit, it's a road alright, a very long one, so…I said to myself, self…”don't sweat the small stuff”, and I laughed after I said it, yeah right, but hey, it's something to strive for, really, I'm striving, thriving, starving(it's those rice cakes man, like they are air)…crunchy air, I love them!! Did I mention my newer nodules are going…crazy, for the lack of a better description…I'm taking it as a good sign, the mino attacking them little sticky numbers…get your sticky arse out of her nodule, hup two three four, hup two three four…lovin' it!! I'm feeling not to bad really, my hands and wrists seem to be very bad of late, but nothing out of the ordinary there, just glad to at least be on the road, to where ever it may take me, it's for the long haul, it's scary, and I just have to figure out what nutrients my cells are giving up to these guys/gals, I want it stopped, immediately, it's probably the chocolate, I love that stuff, it'll have to go I guess, whatever it takes I'll do, am trying, not very successfully, but I'm going to get there, it's them or me!! It's time to take it personally:roll-laugh:!! Maybe I'm not as depressed as I thought I was…maybe I'm just plain ole crazy!! Whateva'!!
Heres to you all trekking down your own road, may the road always rise up to meet you, nighty night!
GlitterGirlAugust 10, 2008 at 9:24 pm #314414
Well, well, well, it's been a few months down the road, and I have to say as I look back over the posts I've written in that time, that things have gotten better for me. I was taking 100mg mino on MWF, and I was herxing in a big, big way. Some very lovely people suggested I lower the dose, and i did, to 50mg, MWF and I am coping with this change a whole lot better! Thankyou very much!!! My bigger joints, hips, shoulders, elbows, knees, they were really bad, and now I don't have much problems with them. My feet are not really bothering me much these days, it's my hands, and wrists, and fingers that are. I am having alot of migrains, much more than I normally would, I am sure it is a food that triggers it, so I am not sure what to do about that…I have very bad thrush, and and have lost another few pounds, weighing in at about 110, at 5″8, I am not trying to lose weight, it's trying to go gluten free I think, I am eating less, but better food. I am sure it will all come around, just a matter of time I guess. My personal life is full of stress, (who's isn't), but it slows me down, and i guess I don't take care of myself the way I should be, but hey, things are alittle bit better, and I haven't had the time to appreciate that, until today, I am feeling pretty good, I am afraid to say that too loud, hahaha, it's more of a wisper, I even think my nodules that are coming to head, are getting very slowly smaller, Yippee!!! I have to dash, sorry for not writing alittle sooner, sending much love, healing, and warmth to all,
glittergirlSeptember 19, 2008 at 6:35 am #314415
It's been a few months down that long and winding road, and I have been under some serious family pressure, and all the other stuff we call life. I have been thundering ahead, waiting for this doc app. and waiting for that one, and blah, blah, blah, when it occured to me the other day, I HAVE BEEN FEELING PRETTY DAMN TERRIFIC LATELY, AND I COULDN'T WAIT TO TELL EVERYBODY. I KNOW IT'S BEEN A LONG TIME SINCE I HAVE WRITTEN, I AM NOT DEAD!!!! SURPRISE:P!!!!
Things have been fairly mental around here lately, plus getting the kiddo started in SK, and running around getting bus schedules(did anybody notice that word, running?) I said it, really I did, I'm going to say it again, running?? I'm not like jogging around the block or anything, but I actually ran for the bus the other day, and I have been on the go for months, and I have had acouple of whopper flares, I am bouncing the f back and loving every damn minute of it!! I am still essentially doctorless, but am still taking the mino every MWF, running low,(theres that word again) yikes. I do have some other good news, maybe if anybody has the time they could tell me what they think about it, here goes….after waiting many months after seeing a surgeon about having an operation on my lovely crippled feet, he has finally called, and I will see him at the end of Oct, with a final x-ray, before he operates. I am scared —-less, as all can imagine, and don't even know if it's feasible, with the likes of taking kiddo to school, and picking up, and doing the laundry, and shopping, and cooking, and looking after Dad, and well, I am very nervous about it and don't know if I should do it or not. I would love to get it over with, get some relief from it finally, even if it's only for a short time before it starts to happen again, if ever!! But is it really feasible??
I have some real improvements, my wrists are feeling wonderful, I haven't had a single carpal tunnel thing for a long time. And also, I seem to have alittle more energy, I am still battling depression, in a big big way, but things are not worse than they were before, they are actually alittle better. I am sure of it? and saddy, I have to admit, guiltily too, I'm a gluten, your a gluten, wouldn't you like to be a gluten too? Sung to the tune of Dr. Pepper! I was in a coffee shop the other day, and I swear this lemon and raspberry cake called me by name, damn well rapped on the glass, and said take me baby, I'm yours, and I did, and it was! I cannot do it. I'm like what the……….I cannot control myself, I weigh about 110, I've lost alot of weight, and the up side of it is I am keeping the rice cake company up and running(oops, there it is again)I am addicted to them damn things. Crunch, Crunch, Crunch, I can eat a whole six pack of them in about five minutes. Crunch, Crunch, Crunch!!
Here are a couple of things I have noticed over that last few months. when I first started the AP, I would have really bad days, well other than right from the get go, LOL, on the day after I took the mino, now, I am having really bad flares, the night before I take the mino, and the day of the mino is usually a very good one. Not sure if any of that makes sence. Good luck to any reading it! I have had all the nodules in my hands form heads, and are still continuing to do that, but none have disapeared, and I actually have a new one, in an elbow that didn't have one before. Not great, but I am watching it all with amazement really. It is some movement, not sure of it's direction, but, it's new, and I am going to… I almost peed my pants laughing over this one….run with it!!! AAAAAAAAAAAAAAGGGGGGGGGGGGHHHHHHHHH!!
I have had some rough times too, I suspect there is more to come, isn't there always, but lately, things have been unnoticably different, if you catch my drift, it almost crept up on me and bit me in the ass before I realized it, I feeling pretty good, and I wanted to share it with everybody. Sorry I havne't been in touch lately. Missing everybody, and hope all is well with everybody too.
I wrote apart of this poem in one of my last posts, but here it is in it's entirety, its an old gaelic blessing, and I love it, and wanted to share it with y'all.
May the road rise up to meet you.
May the wind be always at your back.
May the sun shine warm upon your face;
the rains fall soft upon your fields and until we meet again,
may God hold you in the palm of His hand.
traditional gaelic blessing
I am not a religous person, in any capaticy, but I just thought it was rather appropriate for the Road Back.
Until we meet again,
Love GlittergirlNovember 20, 2008 at 8:22 am #314416
It's been a couple of months since I have written, and I thought It was time for a small update. I am really doing very well, physically. Really! I am still taking the mino, MWF, brand stuff. And I haven't had a really bad flare for some time. I still got some issues to get too, for sure, but I am enjoying this newer aspect of my disease. It really works, unlike anything before it, I can feel the difference, it creeps up you, and before you know it, your like walking all day long, working all day long, and you aren't crippled when you get home, and doing small things you haven't done in years. What I have noticed, is the amount of muscle deterioration I have, and I haven't had a single carpal tunnel flare since I started the mino pretty much. That has been truly amazing to me. I don't even wear my splints anymore, and I'm lugging groceries home, and pushing my dad in his wheelchair, and like, you go sista!!!!!!! Emotionally, things are I'd say, at an ultimate low, family issues mostly, I'm good mostly, just too tired for much of anything fun of late. I'll live. I am concerned with the muscle loss, which my last rheumy called atrophy, I don't know if it is revesable, but I notice alot more now that my bones seem stronger, and I am trying more things, I am hurting myself via my muscles. If that makes any sense at all, so I am going to look into that and maybe start to lift some weights. The gluten diet remains a, shall we say stumbling block, but, I figure, I'm going to get complety better, it's going to take some time, and I am already infinately better than I was a year ago, so I'm not beating myself up much about it. It's alot to take in, and little baby steps is the way to go for me. My foot is firmly planted on this road, nothing could sway me now, I will be having an operation on one of my feet within the next year lets say, It's a distant dream, but it is getting closer and closer, and then one day I'm going to wake up, and I am going to put on a pair of normal shoes, and go into the yard and burn them damn orthopedic shoes, and dance and shout for joy!! Oh yes indeed!! I hope that if you are just starting to learn about the road back, and you come across this letter, I know it's not very inspirational, but find a doc who will give you the mino, and try it, you have absolutely nothing to lose, and well, burning orthopedic shoes to gain, is there anything else?? I think not!! Wishing you all a road with new paved tar, smooth, and big fresh trees swaying in the breeze, take care all, wishing you the best,
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