The Ripple Effect

Getting older is tough enough.  Watching your body change as you get older is a gradual process.  A gray hair here, a gray hair there.  A wrinkle here, a wrinkle there.  As the days move forward, at least you know everyone else is in the same boat.

But getting older with an autoimmune disease, in my opinion, is far more difficult.  You plunge head first into a scary world, and you imagine this must be what it feels like to be 90.  Losing abilities, taking pills daily, watching your body change at a very fast rate can be not only frustrating and painful, but detrimental to your mental health.  Each day is different.  You might notice new rashes on your skin, new bumps or bruises, or another task left uncompleted because of lost ability or weakness.  I remember clumps of hair falling out in the shower.  I felt sort of like a cancer patient.  The kinds of things you go through are just not meant for daily conversations.  So you feel alone and trapped in your own skin.

Luckily however, I have been able to get my Rheumatoid Arthritis under control with alternative medications that don’t have side effects.  My hair no longer falls out in clumps.  I rarely get new bumps or rashes.  And I am able and agile enough to once again live a full and productive life.

But that’s not why I’m writing this post.  This post is about the unknown and that gripping fear that although everything seems ok at the moment, the likelihood that more problems are in your future, especially as you grow older, is likely to occur.  And don’t say that I’m living life with a glass half-empty.  I am optimistic that whatever arises, I’ll be able to handle and possibly even get control of by taking more supplements.  But my point is, is that it is likely that if you get one autoimmune disease, there may be more to follow.

My first autoimmune disease was a skin disease.  It’s located on my shins and called Necrobiosis Lipoidica.  At first I was told it was Granuloma Annulare and the doctor showed me a picture of a woman with it all over her body.  This conclusion of course, was horrifying to me because for the next five years, I worried I’d be covered with shiny, scaly scars.  Fortunately, the doctor was wrong and instead, I was diagnosed later with Necrobiosis Lipoidica, which is a skin disease that only affects the shins.  Both skin diseases usually accompany diabetes, so the doctor was confused why not only did I not have diabetes, but it did not run in my family.  Later, in my research of Rheumatoid Arthritis, I learned that Necrobiosis Lipoidica sometimes is associated with RA.  Around those same years that I developed this, I also got pleurisy, which is a painful inflammation of the lining between your lungs and your ribs.  Antibiotics seemed to clear it up and it was probably a result of living in such polluted air.  Pleurisy, however,  is a frequent symptom of Lupus and it sometimes accompanies RA.  Fast forward four years and I’m diagnosed with Hypothyroidism.  My gynecologist caught it, otherwise this would have probably gone on for years without me realizing.  Then seven years later I was diagnosed with RA.

The reality is, most people with an autoimmune disease like RA or Lupus, usually have many more autoimmune diseases.  It can be a ripple effect.  Whether it’s the diseases themselves, the lifestyles that accompany the diseases, or the medications, more and more seem to pile up.  I’m glad to be on alternative medications because I know I’m taking things that might just possibly reverse the disease process.  But there’s always that side of me, that terrified side, like a voice in the back of my head that says, “What’s next?”  This time at least, I know that I’m doing all that I can do.  I’m armed with knowledge.  I’m taking supplements that improve my health.  I’m eating better, sleeping more and consuming fewer toxins.  There’s nothing more that we can do besides enjoy every day for what it is, knowing life is uncertain, so whatever each day may bring, let it be the best that it can be.

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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