Welcome back to the final chapter in this series, the last week in July was the week I got sick five years ago, just a few days before my son’s 18th birthday. If you’re just joining in and have some time or the desire to wander through my journey here are parts One, Two, Three, and Four. It’s difficult to encapsulate five years into five posts (which I’d self-limited to three pages in Word, until today) but I’ve tried my best to capture what I found to be relevant. Today I’m going to finish up by briefly sharing with you what 2018 to current has brought into my life, as well as medications I’ve been prescribed or have read about online (incase you are searching for what might help you too (I am extremely sensitive to all medications and supplements and am only able to tolerate a few, which is why you’ll see so many pain meds)), a teensy bit more about my fight for disability, how my symptoms impact my daily life, and lastly, I’d like to share some thanks.
Last time I wrote about how a doctor I don’t normally see in my rheumatologists office ran a bunch of tests, some came back out of range, and frustratingly I was never offered any explanation, but there was more to that story that took place in 2018. Based on those labs, my PCP ended up referring me out to whole new batch of doctors (just to clarify I still have no idea what some of the out of range labs determined). Based off those mystery labs my PCP diagnosed me with normochromic anemia, and sent me back to the same hematologist I’d seen previously (the one who told me the first time I saw him in 2015 that I just needed to go out for drinks more with my girlfriends, so yeah, between you and me, not the biggest fan). He agreed I have anemia and should get IV iron infusions as there are “no side effects”, his words exactly (when I called the pharmacists, he said due to the side effects that liquid iron causes me he would not recommend the infusion). The PCP also sent me to a urologist for abnormal labs, frequency, and extreme pain. The urologist diagnosed me with interstitial cystitis and recommended a specific diet to ease symptoms. And then back to neurologist number one who said she thought I was having migraines and sent me for and EEG and neuro pysch. testing. I think I wrote a post about my experience with the neuro pysch. testing, I can’t remember. Suffice to say I didn’t do it because it’s a very long test and I don’t have the energy for that without sending myself into a flare. The neuro PA, who I saw at the next appointment, actually said the test was completely unnecessary. They said the EEG came back normal, but they also said the MRI, several years ago, had come back normal, while neurologist number two said it was not normal, so my trust level is zero. In the end they diagnosed me with migraines but said the side effects from the medications would exacerbate my symptoms and it wouldn’t be worth it. I saw another GI doctor and he wanted to do two different tests, both requiring sedation. I decided against them. He recommended the FODMAP diet and meds for the Gerd and heartburn. I then saw a functional medicine doctor. She recommended an autoimmune diet to combat the rising ANA readings. (If anyone knows how to successfully combine the interstitial cystitis diet, the FODMAP diet, the autoimmune diet, and the approximately handful of things my stomach will tolerate most of the time I’d like to know.) I’ve assigned myself the do-the-best-you-can diet. I then saw a new cardiologist (number 5) and she’s been awesome. I brought in my fitbit readings to show my crazy heartrates and my arm cuff readings to show my crazy low blood pressure. She sent me for a tilt table test which came back positive for POTS and has been working with me on a medication to help. The rheumatologist ordered an ultrasound of my hands it was determined that I have osteoarthritis, and that would explain the nighttime swelling, all the time pain, and popping in and out of joint. (Any type of repetitive motion or strength from my hands sends them into fits within 24 hours.) And lastly, I know finally right(!?), my bone density test showed worsening osteopenia, but still not osteoporosis (yay!) and I had freezing via liquid nitrogen on my nose and ear of pre-cancerous cells (I asked for two years to see a dermatologist for the spots but they just kept telling me it was dry skin…be persistent ya’ll.). And that’s been the last year and a half. There’s so much more but those are the charted outcomes. It’s a lot, for me. Five years ago, I was walking on the beach, working, and life was pretty calm. Now I feel as if I’m constantly juggling appointments, fighting off worsening labs, and holding my current diagnoses at bay. If I want to call myself a warrior…I’m going to, because I am.
I hemmed and hawed about including the following for a couple reasons. I’m not a doctor and I’m not giving advice, I’m just sharing with you what’s come to me in the past five years. When I was first ill, I’d have tried to walk on water if that would have cured me, now I know there’s no cure. I hunted feverishly for anything that would help, so I’m sharing what I found, but please research and talk to your health care professional before you put anything in or on your body, ever.
- Here are the medications and supplements I read about on social media that helped people, in no particular order:Valcyte, Valtrex, Mestinon, Bifido Bacterium (“I have been taking bb536, which is a stable version” quoted from someone on Twitter), Coq10, Nadh, Magnesium L-Threonate, Low Dose Naltroxine, 5-MTHF Or L-Methylfolate, L- Carnitine, D- Ribose, Noradrenaline Mepivacaine (For Dental Work but not sure if it’s a US drug).
- Here are some of the medications and supplements that have been prescribed to me:Fentanyl, Naproxen, Cymbalta/duloxetine, Feosol, Folic Acid, B12 (I take sublingual Jarrow Methyl and I love it, but they wanted me to do injections. I asked them to try sublingual first and it works enough to keep me in low normal range), Meloxicam, Tramadol, Fludrocortisone, Midodrine, Gabapentin, Savella, Butrans patches, Cyclobenzaprine, Hydroxychloroquine, Norco, and Droxidopa.
I was also given a variety of homeopathic treatments but had no luck with them. One of things I don’t share often here is that I don’t take opioids, nor do I use CBD, before you form an opinion…I have nothing against either of them, and I love that so many people have relief from them. If I was end stage of an illness, I definitely would use both of those. Again, please research any of those above and talk to your health care professional, I’m just sharing what’s come my way for anyone who may be searching.
You know I couldn’t possibly wrap up this series without discussing social security disability at least one more time. Since the attorney’s office who handled my case for the hearing is refusing to give me any part of my file (beware folks make copies of ANYTHING you give to attorney’s office) so that I may use that info for the appeal on my recent denial, I called SS directly and asked them for anything they’d be willing to send me. He sent me some random documents I’ve never seen before and they were not what I needed, but they did contain the deciding ruling on my hearing, my Residual Functional Capacity assessment. Just so you and I are clear, I’ve turned in several functional capacity forms to SS and NONE of them reflect what’s indicated. Here are a few things they determined I could do: Occasionally lift and/or carry 50 pounds, frequently lift and/or carry 25 pounds, Stand and or/walk 6 hours in an 8-hour workday, and the list goes on and on and on. First of all, I couldn’t lift 50 pounds if I wanted to, and 25 pounds frequently would send me into a horrendous flare with excruciating neck pain. Walking six hours a day? I just…I’m not even sure if this person looked at my file. I’d pass out within the first hour. But this has been my experience, I submit doctors’ letters and evaluations and SS just writes random nonsense not founded on my documentation and deny me, over and over again. I’ll keep applying but if you are curious how I really feel about it? I think it’s one of the most unethical, inhumane, unjust, shady, and sleazy divisions of our government. I honestly don’t know how these people sleep at night. I’ve said this before and I’ll say it again, if you’re an investigator reading this please come hang out with me for as long as you wish and then tell me how able-bodied I am, and what job you think I should be doing. Just writing these blogs from my bed in my jammies, exhausts me, and causes intense pain, and blurry vision, but please tell me how I can walk for six hours? Before I got sick I used to say everything happens for a reason, and I believed it, now I think some things do, but certainly not everything. This experience of fighting for money from a system I paid into in case I got sick has been one of the worst parts about becoming chronically ill. I cannot fully articulate to you what it does to a human being, without close family to fall back on, when there is no income, it’s devastating, there are no two ways about it, and there is also no reason for it. Sick people should not be treated as I have treated, it’s very cut and dry. The system is broken, it needs to be fixed. The man with the most money (the best attorney) or family to help fight for them should not be the one who always wins, while the person without the energy to fight for themselves is tossed aside. Moving on…
This series has been more factual, more about the motions of what has happened but in doing so I haven’t really shared with you how this illness has changed my day to day life. Quickly I thought I’d share that aspect. You know who I used to be, full time employee, active, health conscience, mom, and lover of life. But life has changed and this is a bit about my days now. With insomnia, you never know when you’ll wake up, so it’s random, but I’m NEVER rested. I wake up feeling awful, like I’ve been up for days, way too many days. My eyes are dry and painful, my body hurts, I’m queasy, and my blood pressure is very low. I can no longer just jump out of bed. I have to eat around 10 so I usually eat a small amount of oatmeal (my stomach allows that seemingly most of the time) and drink some chamomile tea, which I have in bed. I eat in bed because sitting in wooden chairs hurts (even on a pillow), my feet turn blue, and I get light headed. (I can’t sit on the couch for periods of time either as it causes my neck to flare.) Mornings are slow as the I shake the fog. I like to look at the daily watercolor prompt and start thinking about what I’ll paint that day (I don’t look ahead as it’s kind of a fun something to look forward to). I’m surrounded by lists of things I need to do (doctors I need to call back or related things like that) and I choose one or two every few days. Pushing through them all takes more energy than I can recoup. Lunch is the same, in bed. Dinner is often take out as preparing food takes up too many spoons these days, and I can’t tolerate a lot of the foods my boyfriend likes to eat. I try to eat dinner at the table when I’m able, but it never last long as the pain is too much and I’m exhausted by then so it’s straight back to bed for the night. At my baseline, not in a flare, that’s my life for the last five years. In a flare, I’m often curled up in the fetal position, hoping I don’t have to go to the hospital, hoping it passes soon, often trying to figure out what I did. One of my last flares came from eating too much coconut milk yogurt (daily). I’ve cut back to every few days and it’s better. That probably sounds wacky to you, but it’s my reality now. My body makes the rules, I live by them for my best health. I’m in pain 100% of the time, I fight for energy in every waking hour, my body feels like lead weight, walking makes me breathless, I no longer care what color my hair is, I don’t wear makeup because of my eye issues, and I’ve gained a good bit of weight despite a very low calorie diet of whole, organic, foods. I take a cane everywhere that I don’t go in a wheelchair. My wheelchair makes my neck pain awful, but not until afterwards. Speaking of neck pain, you wouldn’t believe what can ignite it’s attack on me. Things from sitting in the wrong chair, to using the wrong pillow, to lifting something I shouldn’t, to reaching incorrectly. I’ve been told my neck shows as inverse. The pain is some of the worst, and I was in labor for many hours with contractions one minute apart long after the drugs wore off, so yeah, it hurts. But so does the rest of my body. My body hurts to the touch, my joints hurt, any exertion, like up the stairs causes extreme burning pain in the tops of my thighs (probably lactic acid build up, thought to be 80% higher in MECFS patients than Olympians), and I have roving pain that settles in in an area and hurts like crazy and then moves on to another area. Right now it’s in the left side of my face. The roving pain is difficult because you never know if something is wrong with that area or it’s just the roving pain. Because I can’t possibly list all of my other symptoms, aside from the exhaustion and pain, this is a quick snippet of where else I have symptoms: eyes, sensitivities that are hard for even me to believe, urogenital system, gastrointestinal system, neurological system, equilibrium, sleep, cognitive abilities, and if that’s not enough, mood (in total I think there are 113 symptoms I did not have before I got sick). There are several theories of why this happens to MECFS patients, two of them are brain inflammation and overheating causing malfunctions, and the other is that a virus is attacking a part of the brain that causes those malfunctions, mixed with an immune system that is possibly out of whack. Scientists are closer than ever, and I realize it’s hard to believe but I have the labs to prove something is going sideways and the doctor’s appointments to prove nobody has any answers as to why. If you’d like to read more about MECFS please check out MEACTION.NET
I can’t end this series without thanking a handful of people who have remained constants in my life. In the beginning a few people stopped by, but mostly that’s stopped. I have an aunt and her daughter, my cousin, that live in another state but when they are in town, they have both gone out of their way to see me, and for that I’m eternally thankful as I love them both dearly. I have a co-worker turned lovely friend who still stops by to chit chat and I’m also eternally thankful for that as she’s the only one who regularly stops in. And then there’s my sweet Godmother, who has been there for me from onset, she enabled me to see a homeopath, she has made me promise that I would tell her if there’s was a cure because we’d be off to, wherever in the world, to try the cure. She helps me feel like if the walls come crumbling down, she’ll be on the other side to catch me and for that I’m eternally grateful. I know I drive her crazy because I refuse to ask anyone for help at any time, but I adore her, and I hope she knows it. And then there’s my Bubba and my Bunny. My Bubba is my son, and I would have never chosen this life for him in a million years, but he has risen to the occasion in ways that I can’t describe. I adore him, as you know if you are a regular around here, but wow, what a heart of gold. When he was younger, he had health issues and we roughed those patches together, and now we are roughing these patches together, and I just couldn’t be prouder of him. I want so much better for him and I know in time things will get better than they are today, so much better. And I’m closing this paragraph with my boyfriend, my Bunny, because without him, I have no idea what would have become of me. He’s provided a home, he’s provided comfort, he’s gone out of his way to make sure I have everything I need, he’s given of himself over and over and over when he had nothing left to give. He’s not a caretaker by nature and this has been harder on him than on me in some respects, but he’s still here, or I’m still here since he pays the rent. 😉 Our life turned upside down and he’s learned to adjust. I can’t tell you how many concerts he’s been to alone, and trips he’s taken alone. He’s adapted. I’m a shell of who I was, but when he looks at me I don’t think he sees that, I think he still sees who I was and he knows I love him to the ends of this earth so he puts up with my silly jokes, the ridiculous meme’s I send him, new symptoms, or limitations, and he faces another day of living a life with someone who has an illness that’s not well understood, that’s not treatable, that’s not been able to contribute to household finances for years. Being a caretaker for someone with this illness is really tough, but every day he gets up and chooses to do it all over again, not everyone does that, in fact the statistics of failed relationships with this illness are very high (like 73% or something), so each day I remain thankful and blessed that he’s chosen to do it all over again. Some of us say it’s like the movie Groundhog Day because everyday is the same for us, but in some respects it’s the same for those who love us too. So, those are my in-real-life people. (I’m incredibly thankful for my online friends too :)!) A handful of awesome souls who have decided to stick around. Without them I wouldn’t be here, how do you thank someone for that? It’s a priceless and precious gift.
On that note, that’s it, folks. Next month it’s back to shorter posts and non-triggering content. Thank you for stopping in today. I know there are an infinite number of things you could be doing with your time and I appreciate that you stopped in to see what I’m up to. If you’re newly diagnosed, keep fighting for yourself. MECFS researchers seem to be closer than ever before, answers are near, just take it day by day. Chronic illness takes everything you thought you knew about yourself and turns that upside down. Some days I make sure my jammies are ER presentable because I’m really not sure my body will carry me through the night, and other times I simply thank all that is that I’m at baseline. Happy Adulting, my friends, it’s not always easy, but you can pretty much eat treats whenever you want so that kinda makes up for it. 🌸 Cheers to another five years (hopefully we’ll all be cured by then!!!) 🥂