What I want you to know about find my own way through lupus and becoming my own advocate

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post was submitted by Charlywww.barefootinthechapel.com.

Photo by: Freestocks.org

"Sitting in the doctor's office while she told me I had "MCTD," I remember thinking how much better that sounded than lupus. Until she told me what it was. And how rare it was. And that there was no cure.

Looking back, the doctors think I've had this disease since high school. One year I was so tired I would come home from school and just fall asleep on the bed and sleep every moment I could. It got to the point where my Mom got worried and took me to the doctor. (Here's the "in those days" story...) But in those days, no one went to the doctor unless there was profuse bleeding or exposed bones--still my working definition of an emergency today. And both of those criteria first run through the "can it be super glued?" test before I decide its a true emergency. But I digress. So at this doctor's appointment, no one did any tests. The doctor asked a few question and then pronounced it mono. Of course, since "The Doctor" said it was, it was. Then there were the endless come-and-go stream of seemingly unrelated things that followed: lungs (pneumonia, bronchitis, shortness of breath), heart (arrhythmia), arthritis, the female bonanza (botched surgeries and hysterectomy), miscarriages (how many?), muscle and joint pain (in places I had no idea I had), insomnia (at 2 am, those infomercials look positively sane AND necessary), nausea (learned to drive and puke--my definition of multi-tasking), and always the exhaustion. And I would look around and wonder who the genetic mutants were that always seemed to be bouncing around from one activity to the next. They were peppy, they slept, and they must be a Freak of Nature. How many times had I heard "oh, this just ENERGIZES me! I feel so good when I'm done, I just can't do without it!" Really? In my world when I did anything beyond the Necessities of Life, it was a rocking day. (You know The Necessities of Life: digging dirty clothes out of the hamper that with Febreeze pass the smell test for school; making sure everything visible from the front door is clean and if you can't do that, leaving the vacuum and/or a strategically placed bottle of cleaner there so it looks like you were just interrupted; and sending your kids to scrape the top layer off their bodies once a month.)

This particular class of energized people I referred to as The Spandex Crowd. You know--the ones that just left the gym: thin, fit, tan, and OH SO HAPPY! And wearing spandex. Which, as another digression--let me point this out. NO one should wear spandex in public. If you shouldn't wear it--you shouldn't and we all know what that means. Most of you who think you can--I say this with all the love in my heart--can't. If you can wear spandex, we pretty much hate you, so again...just saying. For the record, my husband is from The Spandex Crowd. He doesn't wear spandex, but his best time in the marathon (yes, the marathon) is 2:36 or something ridiculously over-achieving like that. Regarding marathons--I don't even want to drive that far, let alone run it. I wouldn't drive it, either, but the cost for flying 20 miles to town is prohibitive. And the ones running it? My husband has talent, so though he is amazing, he's not half as impressive to me as the ones who run for five or six hours. They make me cry. I don't even want to do something I like for that long.

Back to the subject. The Spandex Crowd and what they represented to me was what I really wanted to be. I want to jump around in spandex in a Spastic Aerobics class. I want to be the volunteer at my child's school and think up stupid games they all play at the party so they can get treats at the end. I want to have the perfect house every Mormon is supposed to aspire to. (There's a list of these guilt aspirations associated with that I will address later...). I want to can my dish soap and have a year supply of plastic grape flower arrangements for my family! (Did you know if you rip those little suckers off the vine that kids will chew on those things forever? Not my original idea, but my kids have been ripping them off my mother-in-law's for years.) The only thing keeping my sense of sanity intact was that with the notable exception of one sister (you know who you are!), the rest of us all have insomnia. So, it must be the insomnia, right? If I could sleep, I'd be in The Spandex Crowd and could teach a community workshop on How To Be Like Me in whatever subject--just pick one, I would have it mastered. This, however, never happened.

Each time I would go to the doctor, I received my Hope in a Bottle. Meds for sleeping. Meds for pain. Meds for female stuff. Meds for infections. Meds for seizures - ??? - I have no idea why, either. Meds for my heart. Every time I came home with great hope, just sure that this time, the meds were going to work. And every time I ditched them eventually because not once did I ever get a med that made me feel better. In fact, the more I took, the worse I felt. This has been a constant throughout the last 20 plus years. In this last relapse though, I determined I would take everything the doctor prescribed because this time was different. I have been much more sick and therefore, these meds were going to be much better. (Let's not even get into the logic of that leap.) I went back every few weeks not any better. They switched out all the meds, swapping them for something a little stronger. And I dutifully took them all. Each time I have come home from The Doctor with my Hope in a Bottle. At this point, it appears that my Hope in a Bottle should have been vodka, if I only I drank. I'm pretty sure I would have had a better time, at least.

Last week I went to The Doctor. I had been telling her for the last few visits that I was really nauseated. I am always nauseated, but I felt one of the meds was adding its "may cause nausea" to my "always slightly nauseated" for a "nausea-guaranteed-to -drag-your-colon-through-your-nose" kind of situation. And while I was happy with the ten pound weight loss in 9 days, I'm pretty sure that isn't the kind of weight loss The Spandex Crowd would be recommending. The Doctor kept telling me that "nausea isn't part of the disease." So far, I haven't found a single person with lupus or MCTD who isn't nauseated. And I proved it--right into her garbage can; or at least most of it went in there. It wasn't on purpose, but really, can you fault the timing? She dropped the meds, and wrote out prescriptions for all sorts of new and wondrous Hope in a Bottle--right after her leisurely dash for the door for a deep-breathing-of-clean-air moment. These particular new meds were clearly targeted only at the symptoms and were hitting the narcotics range. I thought back over all the meds she had prescribed and I realized not one of them was targeted at fixing anything. It struck me then, though I should have received the lightbulb moment a lot earlier. (In my defense, my brain is a fog and I'm 45, but technically my brain fog is 80 since I've been in menopause for over 26 years.) She didn't know what to do, either. So she was just hitting it harder and harder and hoping the Hope in a Bottle did its job. Which it wasn't, so she prescribed the next round of meds. My next subtle threat was to begin in July if this latest set of Suppress-the-Symptoms-Can't-Cure-It-Hope-In-A-Bottle didn't work.

I came home from that appointment and thought "No WAY!" I'm done. I'm done with letting someone else tell me what to do. I'm done with taking all these toxins into my body that clearly were not helping, and truth be told, made me feel like I was losing control and getting sicker. I'm done with not knowing why, how, or when this disease was going to drag me down its nasty little path. Let me point out here, I am a swift learner. You can't say it took me over 28 years to come up with this. You can really only say 14 or so since I was diagnosed with lupus. I'm a quick study. It was time for me to find my own way and become my own advocate. So I started flushing. If you are from the Save the World Environmentalist camp, I polluted your water. Get over it. Enjoy the rewards: with any luck next time you drink a glass of water you'll get high. My sincere apologies.

Now I'm onto the next Hope in a Bottle series, but one I have decided on for myself. I researched for hours and came up with a list of all the vitamins and minerals and foods that target the various problems with my immune system, and therefore my body. I met with a nutritional specialist. I gleaned off a list from a fellow MCTD wunderkind (really--truly amazing). I took the money I was going to spend on meds and bought a large shopping bag full of Hope in a Bottle From the Organic Food Aisle and devised my own plan between healthy eating (and not just the food pyramids guide, but back to nature whole foods) and doTERRA supplements. I even started adding aloe to my water to see if it will help heal my esophagus and intestines. Its not as nasty as I thought it would be, but that's relative since I'm doing things with kale now. Kale. Its the wonder food that feels like you are eating thistle and makes you want to eat thistle for the taste. I tend to go at things full tilt, so I may possibly have gotten carried away. Possibly. The nice part of this is I rarely need to eat since I am drinking large amounts of things that resemble rotting alfalfa. Truth be told, some of them smell that way, too. I have no idea where this is going to go and I am really a guinea pig for the whole idea. But I figure at least this time, my Hope in a Bottle is something I feel excited about and I chose it. I was so excited, I didn't take my naps and was up all day yesterday. Of course, since I feel I must tell the truth here, I am a mess today and I'm pretty sure I used all my spoons for the next two days in one afternoon. But still. I have hope. And I'm pretty sure its because I am taking control and not because of the bottles."



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