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I’m just a week into my plan to stop all meds for my RA and the aching is just starting to be noticeable. My doc decided to agree with me on my wish to just stop all the infusions and other meds for a two month period, get my system all cleaned out and start over with a new plan. All of the drugs we’ve tried so far have not been working at all, my blood test markers are still in the sixties, sixty-seven to be exact. That is still a level of “severe RA”, so they weren’t working anyway. It’s going to be an interesting two months, I have to try not to search for and think about every new pain that will come along, like listening for an intruder.

In the mean time I have taken more steps to address my depression. My tough gal attitude and yoga/meditation just aren’t getting me through. So as of today I am taking Cymbalta. It’s a first for me, years ago I did take Zoloft for similar depression. This is used for people who suffer from Fibromyalgia as well as anxiety and depression so it may even help my pain too. It’s like an experiment as far as that goes, I’m hoping for a big success on that front. I want to be able to feel happy again even if everything going on isn’t really so happy. This wont be a fix all cure, I’ll still need to work on being positive myself but a little help will be a good thing………..

Cleansing

I had an appointment with my Rehumatalogist yesterday and left with a very interesting plan. I had a severe reaction to my last infusion, and wasn’t planning on taking the same meds again for any reason. The proposal in the office was to receive a steroid and Benadryl before using the same infusion meds. I declined!!! In a sarcastic way I told my doc that i just felt like not taking all these poisons any more, just quitting, but I don’t want the disease to get worse or the damage. Much to my surprise he was willing to try a plan with me of cleaning out my system for two months and starting all over again. He was certain to tell me not to be a “tough gal” and really get in bad shape and hurting too much and call before two months is up if it’s just really miserable.

I am pretty excited about the new drug he told me about, and I’ve researched last night, that does much less damage to the entire immune system. This will be a healthier way to try to slow the progress of R.A. by targeting only the “B-Cells”. He has a few patients that are a year out from the last infusion and are feeling really good. I am hopeful, I have tried a lot of treatments in the last four years and have found none that work on me, my markers are still really high.

So my energy goes out into the universe asking for a positive outcome for the next few months and if I really achieve results I will find a way to tell others about it. Being a member of the Arthritis Foundation may be just the podium for spreading the word, after all in four years I had never heard of this treatment and being a healthier one I want people to know about it.

Well crud!!  Today is a bad day for me lots of pain and stiffness. It’s raining and crummy outside so I’m glad I didn’t have plans that are ruined by the weather. I’m sure without a doubt that you have, like me, had plans or hopes or ideas that have to be put off by the day turning out to be a bad one. You want to go and do, but the body just won’t cooperate with you. These last two weeks the depression has been a little rough. I’m trying to figure it out, taking in the full moon, weather and such, but can’t really pin point it.

What I think down inside in that “try to avoid stopping here” place, is that as I look forward to the summer weather and sun, I dread the times when I’ll be held back. This past half a year I have gotten worse, more hip pain and neck damage, so my desires and abilities to go fishing, garden and hike/walking are going to be very different from last year. I am afraid. I guess that’s the truth, as a write that “out load” I come to the reality, I’m afraid to find out the extent of what I can’t do now.

Here’s to hoping for the best, fighting for that positive we want, and doing as much as we can and being thankful for the moments…………..

Here in Utah we have been having a stormy spring. It’s been damp, wet and cold dragging out the winter weather. Several people around the country have told me that this year, for some reason, they just can’t seem to wait for summer. I feel this way myself, I embrace all the season and find enjoyment in all of them yet I too can’t seem to wait for it to be warm so I can get outside comfortably. I am looking forward to fishing and walking the easy trails out in the trees and mountains here. As I look forward with sometimes forced happy thoughts to these activities, I also feel sadness at the limits I will face. As each days comes we have to see if your bodies want to go along with our plans.

I still do things that I probably shouldnt and walk a little to long, or try hiking up a little to high, because I just want to be like I used to. I will pay for the next few days hurting more than usual, but feel it’s worth it most of the time. I tell my fiance that at least I can push it now, actually pull it off if somewhat slower, and they day will come when I can’t. I really will stay back and sit on a rock while they go a little farther, or not make it to some of my favorite spots at all any more.

To those of us who face this reality of not being the fit people we were, and those that are already at the point of being truly held back, we can enjoy getting however far we can. The view from our rock, that’s as far as we can go may be pretty damn good anyway. So go when you can where you can and I will too, and we will get whatever positive energy from the distance that we can. Heres to days when we can get out there and try!

I have been told that the number markers for my R.A. diagnoses are high, by the time I went in to say “wow everything just hurts and it’s strange” I had ignored it for a few years. So it was already called severe by the time I heard that I have it. Yet I am able to do most things, most days so far. I think about the people who are already much worse and I feel so badly for them. I have always been the type to worry and feel badly for other people, even strangers, more than to feel badly for myself. I dread the days when I really can’t button my jeans, or tie my shoes. Some days this is hard or hurts now but I can actually still get it done. Seeing some elderly people in my community who can’t open their hands anymore sends dread into my core.

As I look forward to the Arthritis Foundation Fundraiser Walk on June 4th, 2011 in Salt Lake City, UT. I really think even more seriously about a cure being found. We can be thankful of course that this is not something that is deadly, I take Breast Cancer and other fatal illnesses just as seriously, if not more so, but to find a cure and not have to take daily, monthly and life time drugs to stop being crippled would be so very nice. The side effects are pretty crummy and take a toll almost as much as the R.A. itself. If we can all get together and give each other a hand in the research, information and cause to find answers to this disease we may find ourselves making progress. A cure is out there.  The most heart warming thing about finding a cure, to me anyway, will be to stop the suffering of young people with J.R.A., to have years of pain and deformity taken from their lives……….. priceless!

Off and on through the years I have dabbled in Meditation and Yoga, I enjoy the slow peace that comes with sitting and thinking about breathing and relaxing. I have found myself drawn to being more serious about the practice of meditation in the last months to cope with the new reality of limits. As I mentioned this blog is for working on and want to be positive, wich is not the daily reality, so I work at it. Yoga is really good to just stretch and bend and feeling like I can still do something. I have to modify some poses to suit my abilities but it everyday as best I can. I use my Wii gaming system and have that bit of coaching in my livingroom and also follow ideas in “Yoga Magazine”. I must admit my jealousy of some of the more extreme poses that I can in no way do because of my hands, wrists and elbows.

As for meditation that takes some work for me, a busy body at heart, and I find the initial guilt for doing “nothing” and spending time for myself is not an everyday issue any more. The absence of thought is really difficult to achieve, I have yet to do it for more than half a minuet or so, being new to the practice I don’t beat myself up over it. One of my favorite movies of all time is “Eat Pray Love”, I also read the book, and watching the struggle to meditate and have only a minuet pass by is just too perfect!! If you have ever even considered Meditation, or not, I really do suggest trying it out for issues like pain, anger and sadness. It is a self-healing relaxing time and you can sit, lay, prop up and find any old way that will work for any level in the R.A. world you may be in.

If you do pick up the practice or try it and think it’s just not for or you have been doing it for years, I’d love to hear what you think and feel about it, and if you have any advice for me too.

Rain and Pain

Good Morning, I hope you are doing pretty good today. It’s raining here in Utah and it has me thinking of a discussion on weather and health conditions. I have heard people say that the weather doesn’t affect joints, pain, headaches and so on. I personally believe it does. If you have even small normal aches and pains you may have felt them get worse before and during bad weather. I certainly have, in fact it’s almost like a farmer predicting coming weather by watching his livestock, I feel aches in my joints (that regularly do) a day or so before a storm comes. I tell my husband “a storm must be coming soon” and it does.

People with headaches have also told me they worsen before and during stormy weather. In fact a lot of people move to AZ and FL to avoid really cold weather that affects their joints and lives. I just find this train of thought interesting and wonder how you could make it viable scientific proof to be true.  Were your joints going to hurt anyway? Is it really the weather? I say if it happens regularly to an individual and they know by experiencing it, then we can total up all the accounts and say it’s proof. Those in the know and in the experiance don’t really need proof, we live it. I hope you have a good day today and have at least one special moment to remeber as a good time, so you can bring it out and hold it in a bad time.