My first journal entry on Daily Strength: Aug 8, 2007

To those of you who wake up every morning in pain, or sit for a few minutes and have trouble getting up……or feel weak, tired…. depressed…….. or have people who don’t really understand……… to those of you who keep trying everything you can to get rid of your flare, hoping to just get back to your normal self……….. and to those of you who are saddened that you can’t do the things you use to do……..like pick up a child, or open up that bottle of water, or take off your bra. Yes, there are days I can, but plenty of days that I can’t. And to those of you that read online things like, “arthritis is possibly caused by poor diets, lack of exercise, unhealthy lifestyle…etc.” and get frustrated because you exercise everyday, eat healthfully and always have, etc…………………

I can relate………and, I want to hear from you!!!

I’m certainly not going to loose hope that I can’t get back a semi normal lifestyle. Plus, with medical advancements, you just never know.

But for now, I continue on my journey wanting to hear from all of you……..in our quest to improve the life we have and to share with each-other R.A. which I truly believe no one understands until you have it.

For instance, I love to exercise and I always have. When I exercise I do feel better. But during a time when I’m not having a flare……..I still can’t do….say… yoga. There are just simply things I can not do. I can’t bend my wrists like I use to……and I’ve lost a lot of strength. When I’m not in a full blown flare, I excersize as much as possible while I can. When I am going through a flare (which I am now) and just so you know, I’ve been on prednisone for 8 months………and now I’m on methotrexate for the first time as well as still on the pred. I’m having of course nausea and hair loss. It sucks and I’m not sure I really want to be on this medicine. At first I thought I did, but I just don’t know anymore…….even though I don’t have any better ideas. But anyway, exercise baffles me. Because now that I’m flaring again hard core, I’m still going to the gym. When I get there it takes all of my effort to get myself moving. But once I start moving, it gets a bit better……and continues to improve slightly (never like it use to) but enough that I’m feeling more confident and happy. The moment I stop…..like literally take a step off the elliptical, I feel as though I’m right back to normal again, meaning pain and stiffness, and it takes all of me to get myself out of the gym and back in the car. Sometimes I have to pull on my legs to get them up on the elliptical.

How many of you have tripped on your way into the shower because it’s too hard to lift your legs? Or how about…..how many of you have worried about your driving skills now that it’s difficult to turn your head and the steering wheel? Any of this sound familiar?

On my last day to drink for a long time which was Sat when I went to this amazing wedding. I drank too much of course, champagne, etc. I exercised that day already so I could feel better in the evening. I took prednisone and plenty of pain killers. I know, I know, terrible on my liver. I didn’t start Methotrexate until last night which was on Doctor’s advice………he knew I’d be bingeing on sat. Anyway, my point: So there I was at the wedding, tipsy, dancing, and having a great time…..the most limber and energetic I had been in a while. And a woman I know who is a friend of mine and knows of my R.A………we were walking partners and with my last flare I had to stop the early mornings… Anyway she said, mockingly, “Your rheumatoid isn’t bothering you now is it?” and it felt so……….you know, like you must be faking this sort of thing.

O.k. now you heard me vent. Ahhhh, this is what a journal is all about.

The Alternative Route Can Be Lonely: A venting story

Choosing your own path isn't always easy

"Landscape at Twilight" by Van Gogh

Even though my RA is pretty under control, I still have setbacks emotionally and physically from time to time. If I overuse my body or don’t sleep enough, I might wake up with sore ankles, stiff and swollen fingers and aching wrists. This is a breeze compared to the indescribable pain and debilitation I used to experience. The other day I became upset when my favorite RA blogger didn’t put me on their blogroll. (I have since been put on the blogroll but my point is, is that it made me realize I was feeling insecure.) It really occurred to me how alone I am on this particular path. I may visit my support group frequently to read posts, but my contribution over time has become less and less.

Over a year ago I had met two other women on Daily Strength who started taking LDN at the same time I did. We were a bit fearful and excited that the new drug we were on would change our lives. We were right. Soon enough , one of the women dropped out of the group. Her symptoms of RA had mostly disappeared and so she no longer needed the support group. She was active with horses and life. I love support, friendship and sharing, especially online. So even if I were to go into complete remission, I don’t have any intention on leaving Daily Strength. It helps to remind me how lucky I am that I feel as good as I do. The other women stayed in contact with me for some time until she went into complete remission. She no longer needed LDN or Antibiotic therapy anymore. Although she had the occasional swelling of a finger she felt she needed a break from the support group, i.e., a break from the reminder that RA had ever existed for her. Maybe I will feel that way if remission hits me completely, where I no longer need a supplement or a drug. Here’s to hoping. But until then, I definitely need people to lean on.

A couple of recent events have made me feel even more alone. I am lucky to have people visit me on this site and share their appreciation and for that I am very grateful. I met an older man at a BBQ and his daughter, thinking we’d have a good time talking, let me know that he had RA too and that I should tell him about my blog. I knew instantly that this might not go as well as hoped because taking alternative therapies is hard to talk about to someone who isn’t. I know first hand what that feels like because I’ve been on the other side. Although some people have been helpful with suggestions, most people have lead me to dead end streets. Avoiding the nightshade family is a good example of a suggestion I tried that didn’t work.

And here in front of me was an older, N.Y. crass, kind of dude. I knew we were going to butt heads. So I tried my best to find our common ground. We talked about methotrexate and what dosage he was on, etc. When he found out I was taking other things and not even seeing a rheumatologist he started hounding me on how I needed to see a doctor….. Sure I’d love to see a doctor I told him, but I don’t have insurance. He continued to hound me anyway. I explained again, “I don’t have insurance and besides I feel so much better now.” He certainly was not interested in what I take at all. He was talking down to me like I was a kid.

He even said the dreaded, “You’re too young to have RA.”

Obviously he was in the dark with his own disease, a crime in my opinion. I tried to switch the subject asking, how bad his RA was when he was at his worst. He had never experienced RA in any other joints besides his hands…lucky man. It didn’t even occur to him that RA can affect other parts of the body. I tried to explain to him that the dosage of methotrexate that he was on, 7.5 was honestly a real breeze and if that’s ALL that I had to take to keep my RA under control, I never would have gone looking for alternative medications. We also talked about the onset of RA. His happened slowly over time. Mine happened almost overnight.

He told me, “Well it doesn’t sound like you have RA. You have something else.”

Oh boy…now for some really frustrating conversation! I had to let him know he was wrong and this kind of overnight arrival of an autoimmune disease like RA was really quite common. He wasn’t part of any support groups nor did he know anyone else with RA. Luckily the chat ended civilly but I was ready for it to be over the moment it began.

This wasn’t the first time that conversations along these lines have happened. On the other side of the spectrum, on my support group a person who joined was claiming Monavie healed everything. I told her I tried it for a month and it did nothing and that maybe I was willing to try it again some other time in the future but it was too expensive, and that I had found other products like Acai Berry V-8 at the grocery store that I figured may work just as well. I’m extremely rational when it comes to taking supplements or medications. I research, reasearch and then research some more! I have never found anything substantial on the positive effects of Monavie. We went back and forth, her frustrated that I wasn’t defending Monavie and telling me medicines are terrible for everyone. I don’t agree with this and I never will and it doesn’t matter that I’m taking alternative treatments. Every human body is different and I can’t say for sure what is best for someone else. I eventually told her what I took. She continued to sound like a sales person and she probably is, stating what I was taking couldn’t possibly help me. I eventually just stopped posting hoping she’d go away.

So what group do I belong to? I don’t really feel like there’s very many people to chat with about my trials and errors.  I have Hashimotos too, and I’ve had that for years. That’s hardly expensive compared to my RA. I try to remind myself that if I was on a biologic, I would be spending enormous amounts of money.   It still feels lonely though not to have my own personal support group where we talk about RA, Serracor-NK, LDN and other supplements we are giving a shot.

So thank you all for reading out there… you are my support and I’m incredibly glad to have you.

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