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Learning to Live in a Body That Hates You

My body hates me... It's attacking itself... Have you ever heard of someone saying this? It's very surprising to know how countless people deal with autoimmune illnesses and the world never sees it, they disguise it all so well. You would be surprised by the number of people who live with these beasts.

Overall, the annual incidence of MCTD among adults aged 18 years and older in 1985-2014 was 1.9 per 100,000 population (3.1 per 100,000 population among females and 0.7 per 100,000 population among males; Table 2). The female to male ratio was 5:1.Oct 1, 2016 (source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5426802/)

Take me for example, my life, my medical diagnosis’. When someone asks about my medical condition(s), I reluctantly say ”I have rheumatoid arthritis”, simply because it's easier to say, rather than to say ”I have mixed connective tissue disease”, diabetes, gastroparesis, fibromyalgia, etc.

It's difficult enough and definitely super tiring to explain what rheumatoid arthritis is to someone, particularly to those that want to compare it to other forms of arthritis. So, imagine my frustration and instant exhaustion of having to begin a definition or dialogue of mixed connective tissue disease. Imagine their reaction and probably thought of ”why in the hell did I even ask”?

Much like asking someone ”how are you today”, you expect to get a response of ”I’m fine”, not ”I’m dealing with a chronic illness that is causing my body to attack itself”.

If you have read my blog about my 14-year journey to rheumatoid arthritis diagnosis, you should have a pretty solid idea of how this all began. If not, here is a brief summarization.

It began with stomach pain, stomach swelling, headaches, migraines, muscle weakness, fatigue, constant chronic pain, eventually loss of motor skills, blue, purple, red, black fingers, and mottled arms. I failed to ever mention the very first sign of any of these indicators was endometriosis. I lived with it and suffered from it for at least 12 years.

What we do know for a fact is that I have a variety of illnesses, or shall I say, they try to have me! Rheumatoid arthritis is just one. Raynauds, type 2 diabetes, gastroparesis, fibromyalgia, depression, anxiety, myofascial pain syndrome and that's just to start. I'm positive that there was a trigger point and it was all downhill from there and me and further convinced that my depression and anxiety are induced by these conditions.

What does all of this mean? What is the real name for all of my additional symptoms and blood work and medical diagnoses outside of the rheumatoid arthritis?

Mixed connective tissue disease!!! The silent monster inside...

For starters, and simply put, mixed connective tissue disease is an overlap of autoimmune diseases such as lupus, rheumatoid arthritis, Raynaud’s, Sjogrens, and systemic sclerosis, amongst a variety of others.

These autoimmune disorders do not necessarily present themselves in blood tests all at once, they, in fact, may never even show up in lab tests. Being the ever confusing medical mystery that they are, they may appear, then disappear, then reappear in labs from time to time. Full medical exams on a regular basis with your PCP and rheumatologist (or specialist) and keeping track of symptoms are critical. These diseases may take years to receive a clear ”medical” diagnosis, yet the symptoms and signs are there.

The diseases/disorders cause your own immune system to attack itself. Your tissues become inflamed in most cases, you can encounter muscle breakdown, joint erosion, dry eyes, skin rashes, consistent fatigue, organ failure, alopecia, skin rashes and skin changes and the list goes on. Due to all of your distinct symptoms, you may feel like a hypochondriac, it is an overwhelming feeling. Medical staff can likewise make you feel that way.

Once Pandora's box is opened, so to speak, and someone does begin the dreadful conversation and inquiry into my personal health situation, I get a sense of overwhelment. I clearly don't have all of the answers to the questions I may be asked. I'm discovering how to live with these diseases, I'm learning new information as I go, I'm researching and I frankly don't want everyone's judgments and pity on me.

I try to nicely decline advice or move on from the topic politely although this is another degree of weariness. I absolutely do not mind talking about it in great detail with those that are truly interested and trying to be helpful. I want to make it clear that I have great people in my life, especially Ed’s family. They truly ask legitimate questions and will have an intelligent conversation about my health with me. Their suggestions are even beneficial and valued.

In other conversations, I've heard everything from ”change your diet” to ”pray more” to ”lose weight” to ”exercise more”. I've tried it all, I've tried essential oils, acupuncture, natural herbs, CBD oil, chiropractic care, massage therapy, and so on..... I tend to find when these folks are giving suggestions, they see simply trying to be nice and are not vested in your health, feelings or care. That's perfectly suitable, yet again, draining!

I take my health very seriously. I take awareness of this (these) disease(s) very seriously. I spend hours reading medical research and studies.

In my recent search, I wanted to find out specifically why it is I was being treated with DMARDS, these disease-modifying antirheumatic drugs, were purely suppressing my T-cells. The information I found was quite interesting.

The T-cells and B-cells are the fighter cells in our bodies. They go to war and fight against invaders, illnesses. In the case of autoimmune diseases, they attack each other. The T and B cells do not understand the difference between an invader or a normal cell, consequently, they need to be suppressed, shut off, so that your immune system does not function.

T-cells travel through the bloodstream and B-cells mature in the bone marrow. We could go even further into science and talk about the two different types of T-cells also, however, it's very technical, I would probably sound like I was babbling in circles trying to paint a clear picture of the cell functions.

So, in my circumstance, the suppression of my T-cells has not worked in most cases. They have either caused an allergic reaction or the medications worked for a short period of time and for no known reason just stop working. Currently, I am on an infusion that I have learned suppresses the B-cells. Can you say ”guinea pig”? Or as the medical world likes to say, ”its practicing medicine”.

If this does not work, what's next? My thoughts exactly. I further explored and found articles that discussed treating the JAK gene. If we (those with autoimmune diseases) are not genetically tested to determine the mutated gene, we are merely just lab rats (yes a little extreme) for the doctors and pharmaceutical companies, just my opinion.

Why are just basic ANA, CRP, SED rates, and COMP panels run? Yes, I've had countless examinations and tests performed. I exhibit all signs of lupus, this makes me ”lupus symptomatic”, I have every sign of Sjogrens and the medication works (the tests are negative), we already know of the other autoimmune diseases mentioned above such as rheumatoid arthritis, which is interesting to note, I've had 3 ANA tests come back positive, two speckled and one dual. All of this along with extensive and continued labs have proved mixed connective tissue disease.

My symptoms are rarely in remission or suppressed. I do a great job of ignoring them and striving to stay strong, happy, optimistic, and hopeful. There are days where I despise getting out of bed, even opening my eyes. My lungs hurt, it hurts to breathe, my muscles ache, my bones throb, I have new symptoms on a regular basis. Distinguishing between which illness is attacking me at that time has proven to be an emotional and mental task. It takes patience and the process of elimination.

As of last week, I encountered myofascial pain syndrome... I broke down and saw my rheumatologist, after a week of trying to self treat with muscle relaxers, a heating pad, and tramadol, none of which worked. Only to find that my muscles are so tightened and in knots, there is little that can be done besides, yup you guessed it, guinea pig time. I received lidocaine and cortisol shots, 8 of them. Now here I sit, still in pain. Upon contacting the rheumatologist again I was told to give it a few more days.

I am very used to needles by now

I'm not convinced that doctors clearly understand the degrees of pain we go through. Each illness presents a different battle, a different level of pain, they are all different. That's why having not just 1 but several is exacerbating.

They are chronic, they are progressive, currently, there are NO cures, solely treatment. Hopefully, everyone can find a treatment that works. It's scary, it's frustrating, there’s not enough information, research, or support for mixed connective tissue disease/disorder. There's barely enough for just one of my illnesses alone. It appears to be all trial and error.

I have found comfort in some cases in the groups through Facebook, it can be a toss-up, some groups are great, others, well, not so much. The ”not so much” groups, I just drop out of. I am interested in the groups and individuals that are willing to share their experiences, stories and want to help raise awareness! I'm not interested in the individuals that want to shove their opinions down my throat. We should all be learning from one another.

I invite you to read an article, which may be quite alarming. In this particular article, it discusses between 2003 and 2014, data collected between 18 states, CDC's National Violent Death Reporting System. In a study noted by law enforcement, coroners, and medical staff, out of 123,181 suicidal deaths 9%, 10,789, indicated evidence of chronic pain. During this study, there was an increase between 2003 and 2014 of suicidal deaths. Rising from 7.4% in 2003 to 10.2% in 2014. The numbers were underscored according to the study as well, during this same time period, individuals with chronic pain also increased.

It is noted at 16.2% were from opioid deaths, while the remaining half died from firearm-related injuries. A vast majority of the chronic conditions consisted of arthritic pain, back pain and cancer.

Please note that this is only one of many studies and back pain and arthritic pain can be from many chronic illness causes with underlying diseases.

https://www.psychcongress.com/news/chronic-pain-may-contribute-suicide

I'm going to continue to fight for my dream, I'm going to travel, I'm going to find a treatment, if not a cure, I'm going to live a life worth living, I know that I was meant for more. I am a chronic illness warrior!

Mixed connective tissue disease does not define me! It frustrates me! I want to bring awareness to it, but I can't do that without learning more about it. That takes educating myself more. I will research and talk to doctors and my autoimmune groups.

If you have mixed connective tissue disease, please let me know what you use going through, what are you doing to get through it? What is helping you? What are your goals? I'm very interested in learning as much as I can and sharing what I know.

There is a saying ”the only thing strong enough to kick my ass is me”, that holds true, especially if you understand these diseases! You don't get it until you get it.

If you or someone you know is suffering from depression or thinking about suicide, please do not hesitate to reach out to local law enforcement, friends, family, churches, and especially your doctor. You can also contact the NATIONAL SUICIDE PREVENTION HOTLINE at 1-800-273-8255, they are available 24 hours a day, 7 days a week!

Additional information https://rarediseases.info.nih.gov/diseases/7051/mixed-connective-tissue-disease

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