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.

8 Responses

  1. aww sarah, you aren’t alone at all. I’m so grateful that you started this blog. keep your chin up, we all think of you often. Many of us are out here trying things and failing at things, aching and paining through our days.
    I’m starting 3rd month of ldn and am still hoping for a major improvement, it is slow going though. Am also using the Serracor=NK and Serra rx products, that thanks to you I found. Have done a lot of research and am currently waiting for MMS to arrive, have read quite a bit about it, I’ll keep you posted. Seems like there are no miracle cures and we are all so different in our reactions to various products.
    I still think this is a better route than heavy drugs although I’ve never taken them, but knocking out the body’s defenses just seems to be the wrong way to go, but as i’ve learned in the last few months never say never-this is such an unpredictable illness. take care, joan

  2. Thank you.

  3. Hey Cathy,

    Thanks so much for the comment and I’ve added you to my blog roll! Yes, I would love to talk and I’ll send you an email. I checked out your supplements. I have a few questions. How are the supplements working for you and what was it that made you decide to be completely med free? I have been on and off of the gluten free diet. For the most part, I do my best to avoid it, but I fall off the wagon frequently. I recently got a book about foods and inflammation and I’ve decided to follow it’s advice for the most part. Chocolate is a big inflammatory according to the book so I’ve been more aware of avoiding it these days. I’m so glad to hear from you and thanks so much!
    take care,
    Sarah

  4. Hi. Hey, you’re not alone. I have been on an alternative path since I was diagnosed five years ago. At first I did an intergrative path working with a rheumatologist and naturopath and now I am completely med free and only working with alternative people. Let me know if you ever want to talk!

    Cathy

  5. RA Guy,
    Your Posts are truly amazing and appreciated. We all just love you! I do wish that everyone would continue to share their stories, even those in remission so we can all stay upbeat that it will happen to us. Thanks so much for the comment and I will keep reading your wonderful blog. I just checked it out this morning! I’m addicted! Thank you so much for everything!
    Take care,
    Sarah

  6. I too, have just entered the world of online support, and it has been wonderful speaking with others who are dealing with the same issues.

    I agree, those of us with RA should try to continue sharing our stories, even if/when we go into remission. Sometimes it’s too easy for us to believe that everything is over…and on the flip side, stories of encouragement and remission don’t get their fair recognition in the forums and support groups.

    Great post!

    RA Guy

  7. Will,
    You’re the best! Thanks so much for all of your support in person and online, it truly means a lot!
    your friend,
    Sarah

  8. Hey,
    I know I can’t really relate to what you are going through, but hey, you have friends, family, and fans. You are not alone, never alone!
    You are doing some great things by writing this blog and sharing your experience!
    I don’t have RA, but I still benefiting from your blog. I am consider buying some Kalawalla Extract that you mentioned in one of your blog.
    Cheers my friend! =)
    BTW, love that Van Gogh painting!

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