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.

Choosing the Alternative Route

An Apple A Day Keeps The Doctor Away

An Apple A Day Keeps The Doctor Away

This evening I visited my on-line Rheumatoid Arthritis Support Group. I visit the group, not because I’m in pain, but because I want to share information. I used to visit daily to receive support from the wonderful people who share their heartfelt stories. Because I’ve experienced the lowest of lows with RA I feel like I can relate to my fellow online friends and offer the support they need now that I feel great. It’s tough however when I read post after post about their failing medications. I wish for all of our sakes, the choices were easier to make and that drugs given by doctors worked consistently.

I have a theory that when the body’s immune system is suppressed, the body will continue to fight and cause the immune system to boost and the drugs to stop working. The opposite of that, is that by taking alternative medications, the body is given a chance to heal and correct itself. If given enough time and the right medications, I do think this is possible.

One of my friends from the online support group who had disappeared for the past 6 months wrote to me. She had started on Low Dose Naltrexone (LDN) when I started and began antibiotics when I began Serracor-NK. She is now in complete remission. Not only is she not having RA symptoms but she has quit taking LDN and antibiotics for many months now. So what happened? Well I think her body corrected itself, and hopefully it will stay that way forever. If for some reason it goes haywire again, perhaps LDN and antibiotics will again be the ticket to a better functioning immune system. And as well, antibiotics are on the back of my mind, in case Serracor-NK ever decided to stop working. I have complete faith that LDN will continue to work simply because I know other people who have been on LDN for years. One man in particular, Larry has noticed slight changes. He has Multiple Sclerosis, and it wasn’t until his fifth year of taking LDN that he was able to snap his fingers for the first time since MS had started. Now that’s exciting! I know to some people, it’s like, big deal, but when you have an autoimmune disease, it’s little things, liking being able to sleep through the night, make a fist, walk down or up a flight of stairs without issues that can put a very big smile on your face. At this point, I can’t tell what LDN does, I just know my pleurisy has never come back, nor has my chronic sore throat or blurry vision. I am hoping that just like Larry, LDN will continue to heal my body over time.

Before I even began alternative medications, I thought about it from day one. I already had a distrust towards doctors and the medical system for many many reasons throughout my life. Don’t get me wrong, I still go to the doctor, or at least I did when I had insurance. I believe as well, you can to a certain extent, help the medical system help you and not just go through life with blinders on. I have fought at times for certain medications or doses, and even for specialists. Getting your doctors to work for you, rather than you working for them is difficult and exhausting but in the end, it can be worth it.

I noticed early on that people on the support group who had RA generally didn’t have their perfect “cocktail” or drug mix that took away their symptoms. If they did, it seemed to be temporary. It was just a matter of time before their liver enzymes were up or the drugs stopped working. Tonight for instance, there was a post about methotrexate and prednisone not doing the job it was suppose to. The methotrexate dose was raised and yet she still wasn’t feeling better. Not only that, the raised dose of methotrexate had caused more hair loss and flu like symptoms. Inflammation was still a problem so an additional medicine was going to have to be introduced. She was frustrated and feeling confused how having a rheumatologist was helpful. The reality is, RA can be so severe that even the extreme fatigue, hair loss, flu like symptoms and yet dealing with some inflammation, flares and brain fog is still a better condition than not being able to walk or get a simple task done. It’s just sad to me, that the doctors and pharmaceutical companies only seem to offer drugs that will eventually harm you. If your autoimmune disease doesn’t do the trick in hurting your body, then perhaps the medications will. My opinion of this is conspiracy, I hate to say it, but I do think that in a world where sick people make pharmaceutical companies money, it would make sense that keeping them sick would be the answer. I don’t think it’s a coincidence that biologics and chemotherapy drugs used for RA give you less inflammation but in the end can lead to other autoimmune diseases or even Cancer.

I remember just before I stopped taking methotrexate and started taking LDN, I had done a little survey with the support group asking about daily symptoms, how many drugs they were on, and how long they had had RA. As well, had they ever experienced remission and what was the best they had felt? What I found was, the majority of people suffered from daily symptoms of RA, side effects from the drugs they take, and hadn’t experienced remission. Not only that,many people were still trying to get their symptoms under control, adding more medicines which meant more money out of their pocket and more side effects. The majority of them knew I was going to start taking LDN. Some cheered me on. Some people worried and asked me how I could choose this when it was DMARDS and Biologics that were suppose to stop the disease from causing deformation. I would explain that prednisone, which most people were taking was causing bone loss, and that until their disease was completely under control, they were probably experiencing bone deformation. As long as the disease is active and you have inflammation, regardless of what drug you’re on, joint erosion and deformation could still be in the process.

Even I have bone deterioration and that was under the supervision of a Rheumatologist and under the right drugs, including a DMARD. I have barely any swelling now, on alternative medications, and I know as long as I do have swelling I’m probably harming my joints. But knowing that prednisone which my doctor had me on for a year, harms my joints as well as other parts of my body makes me feel like the alternative route is the best way to go. How can I complain when I’ve had the least amount of swelling since the onset of RA. I wake up pain free every day. I would love to have complete flexibility in my wrists, which I don’t but I’m hoping in time it will still happen. You’ll have to keep up on my progress to find out. Either way, I’m still genuinely happy that I made this decision because I have no side effects with the supplements I take and LDN, except for good side effects like lower cholesterol and more energy . I can drink if I want to, and I almost never have a flare. If I do have a flare, I’m not even sure if it is a flare because the swelling and pain is so minimal. Possibly the best side effect that I never expected…..I have more hair than I have had in years. :)

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