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.

Sick Days, No thanks!!

Vomiting is one of the many side effects of Methotrexate

Vomiting is one of the many side effects of Methotrexate

Being part of a support group, I check daily posts written by fellow RA sufferers. In a recent post called “MTX questions” a person asked what others do in regards to taking their MTX, (Methotrexate). Do they take it Friday and feel sick on Saturday or do they take it Sunday and feel horrible for Monday? This is a common question and it gets addressed often. For those of you that don’t know, Methotrexate is a chemotherapy drug, also known as a DMARD and it works by suppressing the immune system. For those of us with an autoimmune disease, the common thought is that an autoimmune disease means an overactive immune system. I have found information that states autoimmune diseases are simply the body confusing healthy tissue for non-healthy tissue, meaning it’s not a system that’s overactive as so much it is an immune system that isn’t working correctly. Suppressing the immune system does not make it work correctly. Instead, it keeps the body from destroying itself, kind of. Methotrexate may cause damage to the liver, intestines and sometimes the lungs, just to name a few. Although it doesn’t seem like methotrexate is a good option, doctors don’t present many other options when you get diagnosed with RA. And you can’t go on living with uncontrollable inflammation. Inflammation in itself, if left uncontrolled can cause cancer, intestinal damage, organ damage, other diseases and with RA will most likely cause joint erosion and deformation. So although taking a toxic drug like methotrexate seems out of the question, not taking it is just as scary.

It’s no wonder I kept searching for alternative options. I was tired of dreading my weekends. On Monday and Tuesday I still felt like I was a little bit “sick” from the methotrexate. If you haven’t taken this drug and it hits you hard like it did with me, this is what I experienced: The next morning after taking methotrexate I would feel more swollen, more painful and more stiff. My kidney area always felt like it had been kicked in the night and this would last until later in the evening. I would feel extremely fatigued and as if I had slept on rocks. Imagine you haven’t slept in 2 days. That’s how fatigued I felt. Or imagine what the flue feels like. That’s exactly how it was, resting both Saturday and Sunday so I could prepare for the following work week. Even running a low grade temperature wasn’t out of the question, of course this could have just been my RA at work. My hair would always fall out in mass amounts on Saturday and it would lessen as time went by. My eyes would be somewhat bloodshot and I would generally feel less hungry than normal for a few days. I wouldn’t exercise over the weekends. Instead, I would try and “recover” until the week started again and try to summon up energy to get myself to the gym after a few days of shaking off the methotrexate side effects. Heck, I was one of the lucky ones that didn’t throw up after taking methotrexate, a common side effect. As time went on having Rheumatoid Arthritis, I found myself becoming weaker and weaker. Workouts were less effective. My resistance level became less and less on the eliptical machine. I no longer did weights because the swelling of my wrists and fingers made it impossible. I continued to at least work hard at strengthening my knee joints. I figured that was the most important-being able to walk, so I made it my top priority.

When I finally freed myself of the methotrexate hangover, I felt like I was on the right path. And speaking of hangover, being on methotrexate meant you couldn’t drink a drop of alcohol because the drug itself does a # all on it’s own to your liver. Being off the drug meant I could drink again. Though I know alcohol is a poison, I tested my theory out on my own liver….just how bad can it be compared to methotexate? I was getting monthly blood tests because doctors have to keep track of how your liver is functioning and I would closely monitor my tests. At one point in time, just 10mg of methotrexate (a very small dose) elevated my liver enzymes. Yet when I went off this drug, one weekend I purged on alcohol. I came in for my test and didn’t tell them I was off of methotrexate. When the results came in, my liver was functioning better than it ever had while I was on methotrexate. Go figure!!

So truly, the reality is methotrexate is hard on your body. For those of you that take it, I feel for you. If your side effects are bad, giving up your weekends to a drug is a horrible thing to experience. I wish you all the best of luck in your journey with an autoimmune disease, or if you know someone who has an autoimmune disease please be compassionate as I’m sure they could use the support.

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