WARNING: This is a VERY LENGTHY READ.
There is just no way to shorten this… I just wanted to give you, the reader, a heads-up. ❤️
The Story…
I began to have some issues in mid to late 2018 with my right eye. It kept swelling up and turning red all around it. It was also very itchy. It would flare up and then get a little better and then flare up and get a little better – and so on… in about 3 months, I saw 7 different doctors, none of whom knew what the heck it was. All of them tried different things from steroids, to antibiotics, to drops, to creams… you name it… but nothing eradicated it. Then a few months later I began to have trouble with my right leg. I kept stumbling. In actuality, I had always been quite clumsy, so I didn’t think much of it at first. I’ve taken a few bad spills over the years but always attributed it to me being a total klutz. Until I began to feel a pronounced weakness in my right leg, and trembling… and it would just sort of crumple underneath me. I was finding myself on the floor more times than I cared to admit in a day. It eventually got to a point where I couldn’t walk at all without falling. When it first started happening, I tried to use regular crutches to help keep me steady, but the crutches were awkward and I found that I didn’t seem to have the upper body strength to maneuver them – I had become very weak in a short period. I was finding myself more and more fatigued – to the point where I really couldn’t do much at all without feeling faint. Finally, I was falling so often (even with the crutches) that I ended up in a wheelchair for my safety.
I saw several local doctors – mostly ER docs at first. I then saw an ophthalmologist (back in 2018), on to eye specialists/retinologists (in 2021), an ENT (in early 2019, and again in 2022), and two ‘neurologists’. Both neurologist appointments were extremely disappointing, as the doctors were quite dismissive, didn’t even read my medical history/scans in one case, and neither seemed to have any genuine interest in helping me figure out what was wrong. One even said I had carpal tunnel (there’s no way carpal tunnel would have me in a wheelchair.) To say that I was heartbroken both times would be an understatement. It seemed like I kept getting stuck with “duds” for doctors – possibly due to my being on Medicare/Medicaid (though my Medicare policy is managed through Humana now, so I don’t know what the issue is – but I’ve been turned away by doctors who say they don’t take any patient on Medicaid, regardless). It seems as though where I live (in NW Georgia near the Tennessee state line) we are sorely lacking decent doctors who are in the business of actually helping people (as opposed to just seeing how good their insurance is so they can make loads of money off of you).
We are also under-serviced here when it comes to specialists, and the ones that we do have are quite oversubscribed. My Primary Care Physician / GP had mentioned to me on several occasions that he thought I needed to go to a big city where they were better set up to deal with more complex issues… but getting me there would have been a real logistical/financial problem. He could have probably got me in to see people down at Emory or over at Vanderbilt (both are about the same distance from here) but that’s a good 2-2.5 hours each way. I once looked up costs for medical transport companies and gave up when I saw it would be several THOUSAND dollars each way. (Not covered by insurance). I would have loved to have gone to the Mayo Clinic if I could have, but they turned me away when I checked with them. 🤷
I sat in my house, basically rotting away…. and no one TRIED to help. They just said “You should go to Atlanta…” or “You should go to Nashville…” but outside of that, no one had any clue as to how to make it happen. I thought I might qualify for some sort of low-income program or something, but I was never able to find anything like that. And well… social workers in my neck of the woods don’t seem to exist.
So, I was largely trapped in my house for about 5 years.
We had begged for help for my situation but had fallen and continued to fall through every crack possible. Our pleas for help fell on deaf ears, and I kept getting saddled with medical professionals who just left me to rot and didn’t seem to have any interest in helping me. My last nurse practitioner from a local home health agency would rarely even acknowledge my presence. She would only occasionally answer emails and even then, she would give me one-sentence replies at best, rarely ever addressing what I’d asked, and often getting things like meds completely wrong. I could tell her in person and even put it in writing and it would still get messed up. It was scary, and awful, and made my depression much worse. I experienced a lot of trauma over the last several years. As a result, I ended up with some fairly severe mental health issues (major depression, anxiety/panic, and suspected PTSD) that continue to worsen, as we lack any real mental health resources here that I can access.
I desperately wanted to get better… I did not wish to be sick at all… but I feared that I’d been neglected for SO LONG, it might be too late to “fix” whatever was wrong with me. That broke my heart. I still had so much I wanted to do… but instead, I was left in a bed, in my little bedroom, locked away from other human beings. I had my father there in the house with me but never got to see him since he lived downstairs and I lived upstairs and neither of us could safely get to one another. Before you ask… no, we couldn’t move. It wasn’t that simple for a plethora of reasons, mainly financially, but also neither of us was physically up to moving and we had no human or financial help to do so. I could not move downstairs because there was no place for me to go – and there was only one bathroom down there, in his bedroom, and it was inaccessible to me in my wheelchair. We were stuck in a house that was not accessible to people with disabilities. I was grateful to have a roof over my head, mind you. So many people don’t.
We FINALLY got a stair lift around Christmas of 2020 after having saved up and done lots of fundraising for two years (the darned things are $4000+ and are not covered by any insurance), but we got scammed with a classic bait-and-switch scenario where we did not get what we were told we would. I specifically told them I needed an auto-pivot model (where it automatically turns at the top of the stairs so I can dismount.) The one we got definitely did not have the auto-pivot. We were also pretty sure it was a used unit as it had loads of problems since day one and was unsafe for me to use on my own as I could not dismount safely at the top of the stairs due to my short stature and my actual disability. That was typical of our luck. And yes, we called and sent numerous emails to the company. They ghosted us. Cashed our check and laughed all the way to the bank, I’m sure.
We had no family around – or at least, none that could help. My closest friends were back in the UK (where I lived and worked for a few years and made a life for myself), over 4k miles away. I had no one here. And of course, with the pandemic, even if I’d had friends here, they couldn’t have come over. My Dad and I were fully vaccinated for COVID-19 in early August of 2021 and had our boosters. We were a bit late getting all of that because there had been no provisions for home-bound people in our area until then. We had some wonderful people from the county health department who would come around to give us our yearly flu shots – but they really had to scramble to sort out the COVID stuff when all of that was at its peak.
Since I had to use a power wheelchair, any time I left the house I had only two transportation options: An ambulance, which would ONLY take me to the Emergency Room of the hospital, or the local free county wheelchair transit which required a reservation 30 days in advance during Covid, could ONLY do morning appointments, and only on weekdays, etc… There are no wheelchair taxis in the Ringgold, GA/Chattanooga, TN area at all. I am not sure how other people in wheelchairs leave their homes and go places. Do they EVER leave their homes? Or do they all have the $80k+ wheelchair vans and people to drive them? Needless to say, I was stuck where I was.
Additionally, on the rare times I DID use the county service to go to a medical appointment, I had to always scramble to find someone to go WITH me. I needed someone to act as an “attendant” to help me navigate things like opening doors, holding things, and offering general support. My anxiety was off the charts, and with being autistic, things like that can REALLY take it out of me. If I have a meltdown, which I strive HARD not to do, I end up going nonverbal which is terrifying. I did not know many people here and the ones I did know worked during the day on weekdays, so were not available to drop everything and go to a medical appointment with me. I also had to hire a sitter for my father, as he could no longer be home alone due to his fragile state (he had lymphoma, was on hospice care, and was a big fall risk). In a nutshell? It would cost me around $200 cash on the day to hire an attendant and a sitter just so I could be gone a few hours for a medical appointment.
One time I went to a doctor’s appointment and it cost me FIVE HUNDRED DOLLARS! I’d had to hire a sitter for Dad, and an attendant for me. Unexpectedly, my doctor sent me downstairs to the hospital for a few additional tests/scans that took several hours. That meant overtime for the attendant AND the sitter. Because it went past the time that the county wheelchair van did pick-ups, I ended up getting stranded at the hospital in my wheelchair. I had to hire a guy with a truck and manpower to come and get my chair and… someone ELSE to come and get ME. Since I was physically unable to climb up into a truck or SUV – I had to get someone with a regular car that sits low to the ground. At the end of that day, I had shelled out $500 to various entities just so I could go to and from a medical appointment. None of this was covered by ANY insurance, of course. For reference, my mortgage payment is a little over $700 a month. So I had paid almost a month’s mortgage for all of that nonsense. I am NOT rich. I barely make ends meet. I live on social security disability, so something like that is financially DEVASTATING. The barriers to healthcare access are insane here.
Fast-forward to October 2022. My father passed away at age 95, and after several months of grieving, I decided to honour one of his last wishes. He wanted me to stop at nothing to try and get help for my medical situation. I went a bit crazy on the research. I didn’t have the time to work on that as much when I was trying to care for Dad, as I was glued to video monitors round the clock, trying to keep him safe from falls, or I was busy managing his meds or making sure he got his meals. I was in a position now to devote some time to this quest properly – and I did. I stumbled upon some videos by Dr. Terry Wahls and her Wahls Protocol. It’s a nutrition protocol for people with autoimmune diseases. Initially, it was developed for MS patients but has expanded to encompass all the autoimmunes. It is a form of Paleo, with modifications and further restrictions that are meant to help reduce inflammation and strengthen our mitochondria. I went for it. After all, it was just FOOD, right? Expensive organic produce and meats/seafood… but food, nonetheless. Within the first month and a half, I began to see results.
The first change was that my pain levels were going down. That was amazing! Next, I started getting more movement out of that sluggish right leg. It was (and still is) weak, but I was able to move it more. Immediately I asked to be referred for physical therapy, as I thought that little “spark” of life in the leg might be indicative of some promising stuff! I have been in physical therapy twice a week for many months now, where they have been helping me learn to walk again. Quite literally! I have a great deal of muscle atrophy and (ongoing) whole-body fatigue, but I am working so hard at it. Thanks to some lovely people who have purchased items from my Amazon wishlist, I even have some PT equipment here at the house to use on the days in between my sessions.
I do get frustrated, though, because at the end of the day, there is no cure for these autoimmune beasts, and I still have flares. Thankfully, they are not AS bad (usually) as they were before the Protocol, but yeah… they are still there. And there is still pain. But… when I look at where I am now (at the end of 2023) compared to where I was a year ago (at the end of 2022) – the improvements to my health are quite substantial. I am very, VERY thankful for that.
The Medical Stuff:
So, here’s the medical skinny: I have several autoimmune diseases.
I have been living gluten-free for over ten years as a result of Celiac Disease.
I have been on Levothyroxine since October 2018 when I was diagnosed with Hashimoto’s (Hypothyroid) by my Primary Care Physician / GP.
I have also been under the care of a Rheumatologist since 2021, and she has been working with me on other autoimmune diseases. My tests came back with markers for Lupus and Sjogrens. She has me on a Lupus medication called Hydroxychloroquine because she says I have markers that show I am prone to blood clots – something called Antiphospholipid Syndrome, and this medicine is supposed to help that. She also has in my medical notes that I also have Mixed Connective Tissue Disease.
Symptoms and Recurring Issues:
- MOBILITY PROBLEMS:
The right leg often drags/crumples under me – it’s like it works in “slow motion” (best way I can describe it). It is extremely weak. When I do try to use it, it has tremors. I am currently in physical therapy to try and regain the function in it, and have had a good bit of success! At home, I use a ’tilt in space’ power wheelchair – this helps me to relieve some of the pressure in my head from pseudotumor cerebri, as well as enables me to be safe when I am too weak to try using a walker. I can sometimes use a rollator/walker – on a limited basis – for a few steps here and there. That’s real progress! - RIGHT SIDE WEAKNESS/TREMORS:
My right hand is quite weak/spastic. I drop things a lot. It also tremors. This started happening about five or six years ago, but it has only gotten bad in the past 3 years. My right hand also sometimes draws up while I am resting/sleeping, and I awaken with it in a fist or curled up. I have tried sleeping with a little brace on it, but I often wake up and find that I’ve taken it off. - MUSCLE SPASMS:
I have a lot of muscle spasms, mostly concentrated on the right side of my body. It can happen in my face, my eyes, inside my nose, my neck, my shoulder, arm, leg, foot, and the middle two toes of my right foot. When it happens, it sometimes lasts for hours. This has been happening for many years (about 10+), but like some of the other issues, has gotten markedly worse in recent years. In the past month, I have had a great deal of muscle spasm activity happening in my nose (which seems like a very odd place to have them) as well as my lips. I have had ones in my eye that have lasted for several DAYS! - VISUAL IMPAIRMENT:
My vision is profoundly affected. I have always worn glasses due to astigmatism and slight nearsightedness, and I had an examination with my ophthalmologist in late 2018 (he diagnosed me with dry eyes) but my vision is rapidly declining and scaring me, to be honest. It is blurry, and it oftentimes “doubles” (I guess that’s what you would call it when there is an outline around things?) Sometimes the blurriness is just in the middle of my field of vision. I use moisturizing drops several times a day for dry eye (caused by Sjogren’s) and am now on Restasis per the eye specialist that I began seeing in 2021. I am also experiencing a PERMANENT group of floaters + a thin dark strip in my left eye that moves around as I move my eye, as well as a weird weakness and inability to close my right eye and reopen it quickly at times (it’s like it gets momentarily stuck?) The eye specialist could not find anything and sent me for a brain MRI. The MRI showed some trapped fluid, which is why I was referred to an ENT who sent me for brain scans. The brain scans showed that I had a cerebral spinal fluid leak. Wonderful. - HEAT INTOLERANCE/SWEATING:
I have a major intolerance to the least little bit of heat. It’s like I cannot regulate my body temperature and I sweat (only really on my head and neck) profusely. My face turns dark red. I don’t believe it is solely menopausal related, as I have had this problem since my early twenties, but it has been getting worse and worse. It also isn’t because I am overweight, because when it all began, I weighed only 120 pounds. Sometimes I have so much water coming off my head that it looks like someone is running a garden hose over me and it drips all over everything around me. The heat intolerance has been happening since my early twenties, but with each passing year, grows markedly worse. It seems concentrated on my head/face and neck. - RIGHT EYE SORENESS/ITCHINESS/REDNESS:
My eye socket (right side) is very sore and feels bruised a lot of the time. It often feels like I’ve been socked in the eye by someone. Sometimes, it looks like it as well, because I get these red rashes and swelling under and around the eye. This was what kicked everything off back in 2018 and I continue to get flare-ups of it… which I have learned is a Lupus thing and, in my case, it pretty much always indicates the onset of an autoimmune flare. - VERTIGO/BALANCE/DIZZY SPELLS:
I have had balance issues (dyspraxia) since I was a kid, but it has become worse over the years. - WIDESPREAD PAIN:
I have a great deal of pain throughout my entire body. I have pain in my legs, feet, hips, lower back, mid-back, shoulders, chest, neck, and head. I have been dealing with some joint pain as well (hands and knees). I use heating pads to get a little relief for it. If I am honest, I have dealt with this pain for about a decade, but not at its current level. I always just sort of chalked it up to “getting older” but I think the intensity level I am experiencing now is much greater than that of people much older than myself. Before going on the Wahls Protocol, I was at an average daily pain level of 7.5 or 9 and I was nearly always in an autoimmune flare. I was on Hydrocodone for the pain for a few years but developed problems with it kicking off severe esophageal spasms, so was changed over to Hydromorphone in liquid form. I hate how any of those opioid-based narcotics make me feel, so I tend to not take them unless the pain is unbearable. Also, I cannot take the Hydromorphone without also taking Promethazine alongside it, otherwise, it makes me very nauseated. Taking both of those together is a bit scary since they both depress the respiratory system. I have to be super careful not to take too much! Thankfully, since going on the Protocol, my flares are not as frequent, and can usually be managed with some full-spectrum CBD oil, though I do occasionally still need the opioid meds. Sadly, due to severe GI problems, I cannot tolerate any NSAIDS (and have tried pretty much all of them). Tylenol does absolutely nothing (and never has, ever since I was a kid.) - PINS AND NEEDLES:
I often get sharp, prickly feelings in my face – particularly on the right side of my face and in the back of my neck. I also get these on my tongue. It’s sort of a pins/needles feeling. Not necessarily numbness, per se, but just sort of tingly/sharp. - LEG HEAVINESS:
My legs feel very heavy all the time. This has been going on for about the past decade. In just the past several months, I have also experienced circulation problems below the knee and a simultaneous burning/cold feeling in my lower legs and feet. - MIGRAINES:
I have only been getting these for about the past seven or eight years, but in the past five years, they have grown worse. I have been to the E.R. several times with them – once was diagnosed with an “aura” type migraine, and another was diagnosed with a “scintillating scotoma” migraine. (I think they are the same thing, not sure). With both of those, I lost vision in the center part of my field of vision for thirty minutes to an hour. - BRAIN FOG:
Mentally, I am very “foggy”. I often find myself struggling/searching for words that I know quite well. I feel like I sometimes can’t quite get the right words out (and at times, it’s the wrong word/words). My attention span is often non-existent. I often feel like I’m not totally “here” so to speak. Very out of it. I do try to keep my brain stimulated as best I can. I do foreign language learning on Duolingo, as well as read as much as I can – but with practically no actual human interaction for 5 years from being trapped upstairs in my house – mostly in the bed, I feel my brain is turning to mush. - LIFE-ALTERING FATIGUE:
One of the most debilitating problems I have is that of crippling fatigue. For 4.5 years, I rarely left my bed. Part of that was because I couldn’t walk without support (and didn’t have the strength to support myself with crutches/cane for more than a few steps), and part of it was because I simply had no stamina/strength and felt so weak that I could not even move. That fatigue is still there. I feel like it takes every ounce of energy I have just to make it to the bathroom and back sometimes. I’ve taken to only showering about twice a week because it is just too much “work”. The fatigue began about seven years ago, but in the past few years has become crushing and life-altering. I have the power chair to use and that helps – but even with that, I am still exhausted all the time. - MID-SECTION TIGHTNESS:
I get a weird pain/tightness around my chest and midsection – like someone is tightening a rubber band around it. It usually happens when I wear a bra, so I have just had to switch to the stretchy, light-support ones for now (which creates more problems since I have very large breasts). - WORSENING ANXIETY:
I suffer from anxiety/panic disorder as well as depression, and I have for most of my life. I was diagnosed with anxiety at the age of four! In the past couple of years though, it has become much, much worse. I am on the autism spectrum and am very sensitive to many of the medications available for these things. They tend to make me suicidal (the opposite of the intended effect) so I do not currently take them. I had been prescribed a low dose of Propranolol (back when I was living in the UK for university) to help with the anxiety – and I do think that initially, it helped a bit, but with all these health issues crashing down on me in recent months – it’s getting harder and harder to manage. I was taken off of the Propranolol when I went on the Protocol (and lost some weight) because it was causing my blood pressure to get too low. When things get tough, I do try things like mindfulness/meditation, and get a bit of relief with those, but when it gets SUPER bad, I must resort to taking a 5 mg Valium. Mental health care around here is non-existent, apparently, or at least for someone like me it is. - WEIGHT GAIN:
I used to be an average-sized, albeit quite short, person. However, after my kidney cancer surgery in 2009, I began to gain weight and have not been able to take it off, no matter what was tried. I have tried dieting, and when I was still able, I would exercise. I lived in London for university from 2015 until the end of 2017, walked an average of 7-10 miles per day, and never lost any weight, even though I stuck to a mostly healthy diet. The weight gain really ramped up when I had no way to get any exercise at all and was home/bed-bound. I gained 100 pounds in 2 years and got up to 295 pounds! I was only averaging 450-600 calories per day (I tracked everything in an app on my phone) but I think it was a combination of autoimmune stuff, hormones, and lack of exercise. The good news is that since going on the Protocol in March of 2023, I have lost 45+ pounds. I still have a long way to go, and the weight is coming off more slowly now, which is disappointing. - DRY EYES/LIPS/SKIN:
As I mentioned previously, my eyes stay very dry all the time despite using moisturizing drops several times a day. My old ophthalmologist diagnosed it as simply “dry eyes” a while back and told me to keep putting drops in them, but it wasn’t helping. It feels like I have sand in them most days. My current eye specialist finally prescribed Restasis and it seems to be helping a little bit, though they are still awfully dry. Also, my lips stay very dry and chapped, and they crack and bleed a lot. I do try putting lip balm on them, but it seems like a losing battle. My skin is so dry that it flakes, and the tips of my fingers will often split and bleed. I am constantly putting lotions and creams on, and I sleep with Vaseline on my hands, covered by cotton gloves. - SORE LYMPH NODES/ARMPITS:
I am not exactly sure if it is my lymph nodes, but under my armpits stay very sore all the time. It feels like they are always bruised. - SLEEP APNEA/LOW O2 DIPS:
I was diagnosed with sleep apnea a few years ago (I was told I stopped breathing on average like, 50 times an hour?!) and prescribed a BIPAP machine. I use it nightly, but lately, it has been less effective. I am waking up gasping as well as with my heart racing and having palpitations. I use a Fitbit and it shows me having these dips during the night where it goes down as low as the high 70s at times. I often wake up in the morning feeling nauseated and having a hard time getting the palpitations under control. It’s a terrible thing to feel like that upon awakening. My pulmonologist is trying to get me a new CPAP machine that would be stronger than the BIPAP I am using now. Like everything else though, it seems to take forever to get anything done. - HEART PALPITATIONS:
I was diagnosed years ago with PVCs, which I was told are no big deal, but mine are super pronounced. Back then, they were only happening occasionally. Now they happen several times a day. It’s always been shrugged off and I was told it was just my anxiety. Only recently have I been able to get in to see a cardiology group and they had me do an at-home heart monitor test for several days. The test showed that I did have some little blips of some sort, though they said it isn’t serious, so I am going back soon to see a specialist in their group who deals with electrical rhythm issues in the heart. It’s good that I am finally seeing a cardiology group though, as some of my autoimmune stuff can really wreak havoc on the heart. It’s best to stay on top of things there, I think. - LEFT EAR DEAFNESS/BLOCKAGE:
My left ear became ‘blocked’ about 3 years ago. I can no longer hear out of it. Sometimes the pressure gets super bad, and I feel pain in the eardrum area when it randomly “pops”. Every time I would mention it to any of the people who cared for me, it was shrugged off after they briefly peered into my ear with an otoscope and told me I was fine. 😔 It can be very painful, so I am not sure how that can be considered ‘fine’, but I gave up trying to ask for help for things. Finally, the pain and pressure got so bad that I ended up in the E. R. where they did some brain scans and told me I had a CSF leak. I had a CSF leak many years ago (2006) and had it repaired at Emory University Hospital. That surgeon was able to go up through my nose and do the operation. If memory serves, he said I had a bony defect growing off my sphenoid sinus that had rubbed a tear in the cribriform plate. (I have no idea what any of that means, but it didn’t sound good. And as I had large bits of spinal fluid leaking out my nose – I guess it was serious.) Now it is in a different location and I’m told will require a craniotomy to repair. However, I am also told we have no doctors in this area who even can DO this surgery. Once again I’m “stuck”… wide open for contracting meningitis, mind you… but oh well? I guess they are taking a “wait and see” approach to things for now.
So that’s pretty much me, medically, in a very large and complicated nutshell.