The medical community has become a total failure in some parts of our country. Doctor’s following ‘protocol’ expecting all patients must fit into a neat little box like wild horses failing to realize that there are indeed, zebra’s amongst them.
I joined the service, a healthy vibrant female when I was 21 years old. The picture of health. Living it up, having fun with my peers, going out and just enjoying life. Boot camp wasn’t a big deal to me. I found it baffling to see others crying, suicidal, missing home, being scared. I guess I was use to the yelling, the unknown, the chaos. I lived on the streets as a teenager, dealt with abuse as a child, boot camp was cake. And yes, to those who are in the know, I got my cake. lol.
My dream was the FBI, law enforcement as a detective, forensic investigator, attorney, and ultimately, a judge. That was my passion. I knew the military could get me there. I wasn’t afraid, I was elated. I remember wanting to cry when I didn’t make it beyond tryouts to become a seer instructor. I just wasn’t quite strong enough. I struggled on the lift and that was very defeating to me. I knew I had to push harder and become stronger, I could do it.
My one fear that was beyond most norm was a fear of needles. I don’t like them. I don’t like what’s in them and I don’t want to get poked with them, memories of being held down as a kid, struggling to make them stop. Maybe my body knew innately of the dangers inside them or maybe I just hated being stuck.
I remember clearly the day we all lined up, awaiting the needles that got stabbed in each arm, walking down the line as we stuck multiple times. I went catatonic. Anxiety? Reaction? I’ll never know. I just remember waking up to my TI in my face concerned and a little freaked out at me not responding but my body walked itself back to where it was suppose to go and sat down staring out at nothing, my mind blank, eyes vacant, unaware of my surroundings . I pulled out of it and went on to reading the manual we were suppose to be studying while waiting for everyone to finish. I felt strange.
The next day, if I recall correctly, I broke out in a rash and a fever. I felt like I had the flu. I was sent to sick call and on bed rest. Mysteriously, those records disappeared. But I remember.
Life went on, boot camp finished and off to tech school to learn my new job. This is when it started. My body betrayed me, a little here, a little there. Pains shooting through my knees, my toe numb, back pain, swollen lymph nodes and nose bleeds, insomnia that came out of nowhere with racing thoughts and headaches piercing my skull, stomach pains so bad I could hardly walk, gas churning around and bloating my belly and acid working its way up my throat, my bowels disgruntled and chaotic. What the hell was happening to me? I’m never one to get sick.
I had my first (and only) positive pap smear which scared the hell out of me. Went through treatment to fix it and pressed on. My insomnia persisted. I had a hard time finding meds to help me sleep. Both falling asleep due to a racing mind and staying asleep due to unknown cause. I had episodes of racing thoughts, it was anxiety inducing and frustrating and new for me to deal with. What would cause these episodes when I didn’t have them before? I’ve since learned that brain inflammation and other health issues can actually cause symptoms that look like anxiety. Pretty fascinating topic to study.
My gas pains continued, acid reflux wasn’t being well controlled by the drugs they were giving me and I had issues with UTI’s quite frequently. My ears started crusting over and I developed patches of dermatitis in various places, my private areas fissuring and itching intensely and yet all my tests were normal.
Tech school completed, I went on to my first duty station in California. I was excited to start my life as an Airman, finally done with the babysitting, phase programs, and life restricting programs that all of us have to go through before finally being ‘adults’ and on to the real world in the military. I was excited.
Even there my health issues persisted. I started becoming nauseated and shaky like having hypoglycemia but normal blood sugar levels. Crackers helped a little but the problem persisted. I had fuzzy vision in my right eye that lasted a few weeks and happened twice during my time in service. Stomach pains persisted, fatigue, and a general feeling of being weak. My periods became irregular with break through bleeding and prolonged length of my normal cycle. I had since had more vaccines as required by the military but I don’t recall any further reactions at that point.
I continued to have headaches, some with intense nausea, which seemed to increase in frequency to where I could have them almost daily. I also started to feel myself ovulate which I had never felt before, the pain so intense it would hunch me over on whichever side I was ovulating from. It took several months for someone to explain to me what I was feeling and why, in that regard. I’d never heard of it before.
I had a 10 day headache back in June of 2000 with dizziness and confusion and memory loss. It was a bizarre experience. I could be told to do something and I’d walk away and completely forget when I was told to do. At the time, I thought it was due to Zyrtec, a new allergy med they tried me on due to intense itching all over my body. I’ve since had multiple allergy tests to no avail. There were no environmental allergies in my panel, nor any food allergies. What was causing the intense itching??? Again, why I am I ill? What is happening to me?? I felt like a freak, the constant doctor’s visits, missing work, feeling so miserable and not understanding why. The doctors began to think I was just an overly anxious female and it was all in my mind. How insulting.
During my time in service I had a Bartholin gland that swelled up suddenly to the point of needing emergency surgery. What I found out later, is that my gland, which I had multiple surgeries on, would swell up every time I had a new set of vaccines. Again, very odd but that was the only link I could come up with. I also had a patch of intense itching in my female and backside area with fissures in both locations and again, no answers. Inflammation was shown in the biopsies but never any answers or ways to heal the area besides steroid creams which I’ve now been on for 20 years.
I had frequent upper respiratory infections, random fevers, fatigue, gut issues, skin issues, swollen glands, and a general feeling of being unwell. My body was truly fighting something but what?! I also discovered that I have a normally low body temperature of around 97.4, sometimes as low as 96.2. When did this start??
In October of 2000, I was deployed to Kuwait. We were given multiple deployment vaccinations to include the anthrax shots which came from what was later mentioned as being tainted batches. (I don’t recall offhand if it was just due to squalene in it that was not FDA approved or some other reason). We landed in Kuwait on the day of the Cole bombing.
I ended up being sick for three weeks upon arrival. Nausea, vomiting, fever, my Bartholin gland swollen again. I had sore throats often, the reoccurring skin issues, especially in my ears. I had a hard time eating anything. Due to being ill and mentioning a possibility of being pregnant, I was able to avoid the third anthrax vaccine while deployed. I’m grateful I did. I absolutely believe I’m having reactions to these vaccines. What else could explain my illness or all my health issues when I was so healthy before? Why is my body breaking down on me?
Made it back from deployment and tried to get to the bottom of my sleep issues. My doctor had ordered a sleep study but at this point, the military put me in managed care. I had too many appointments and missing too much work. I had too many issues going on. They thought if I saw someone in managed care, she can determine when I really needed to see a doctor or send me back to work…. Overly anxious female. They sent me to counseling.
Along with all these health issues and multiple surgeries in my female region, another piece of me was taken from me. Sex hurt. It had never been an issue before but now my muscles were tightening and there was pain with intercourse. They sent me to female physical therapy. I ended up having levator ani syndrome and some issues in my hip muscles, pelvic floor dysfunction with spasms, one side worse than the other. So now I’m unhealthy, an insomniac, multiple headaches, constant UTI and Bartholin gland issues, fatigue, frequently ill, fevers, swollen glands, gastritis and gut problems and acid reflux so bad at times I was literally foaming out the mouth, vomiting this foam and dealing with chest pains and palpitations, anxiety, weakness, shakiness, and other odd symptoms. Lymphocytes low, INR low, PMN high, potassium low at times, hemoglobin high at times. Where did my life go?? I’m not the same girl who joined the service. In fact my exit record stated that I was pale, extremely thin, and weak. Certainly not the vibrant lady who had her whole future ahead of her, ready to give back to society and join the work force. Finally my time after such a rocky beginning in life, homeless and living on the streets. I was mentally tough and street smart, motivated, resilient, and absolutely determined. Gone was this girl.
Sad thing is, my doctor was going to put me up for a MEB. That’s where you’re medically separated from the military due to health issues. In the end, they simply discharged me. Honorable, but not accurate, most likely losing out on benefits I should have gotten. I never did get that sleep study in service. Though I was given a VA rating and paid for my disabilities, it will never make up for the loss of my health, the change in my life, forever altering my future and ultimately taking my life from me. Of course I didn’t know this then. But I would, in time.
I often had reoccurring swollen glands in my neck and arm pits. Again the fevers, fatigue, shakiness, blurry vision in my right eye, pain in certain joints without injury would come on out of the blue, last for weeks and disappear just as quickly as it came on. I had issues breathing which they sent me for asthma testing and rather than take me seriously, they simply said I gave poor effort. Again, overly anxious female, probably looking for attention or to get out of work.
So I left the military. I’ve always been a type A hard working, do it myself kind of girl. A bit of a micromanager, ok, a lot of a micromanager and certainly not a girly needy type. I’ve always taken charge and been the shoulder to lean on, the person to count on, the one who handles everything, the glue that holds my family together.
One thing I brought with me from my time in service is the wonderful man I had met and married. We are still together to this very day. I’ve been fortunate but at the same time, he has dealt with so much, sticking by me when most would run. Helping me while working full time and taking on my own responsibilities.
My health issues interfered with my ability to maintain employment. I had a few jobs post service but missing so much work and feeling as bad as I did, I finally gave up working around the end of 2003 and dedicated my time to schooling. I went on campus for a couple years but even that was too much so I eventually moved on to online schooling, something that fit my ability to pick my own schedule, work at my own pace, and deal with my health issues. I earned my Bachelor’s degree in legal studies with a minor in psychology. Still hoping to one day go on to law school and make a difference in the world.
I had had a miscarriage shortly after service. That’s when I found out my uterus has a bicornate shape and that I may never have children. The sad thing is, I went into the VA hospital in pain and they said I had pelvic inflammatory disease, gave me a shot and put me on strong anti-biotics. I miscarried shortly after. I never had PID, I was pregnant. My frustration with the medical system was growing. The following year, I had my first child. A boy. I never felt the urge to push, I avoided the epidural and I refused to vaccinate. Why? Isn’t that dangerous? What else could have caused my health to take such a drastic turn and cause my body to turn on itself?
I also discovered my healthiest time was while pregnant. I thrived. My migraines gone, my color improved, I was doing well. I had severe sciatica with my son and had to use a wheelchair on occasion but overall, compared to my new normal, I felt better. It was during my 3rd trimester that I developed OCD. So different than what the movies portrait it to be. This was not the OCD I was aware of. Horrified by my own mind, I set out to research what was happening to me and finally discovered what OCD really meant. There are several forms of it. I hardly slept. I hovered over my son night and day, watching him breath, keeping him safe, my anxiety raising and my fears growing. I didn’t want to lose him. The delivery was so painful I swore I would NEVER go through it again. I was done. One child was fine with me. I doted on him and loved him to pieces.
In 2005/6 my symptoms took a turn for the worse. I had more palpitations, joint pains, fatigue that was blamed on having a child. My blood work was good. There were never any answers for the symptoms I was having. I was in and out of physical therapy. Headaches increased, dizzy spells, shakiness, blurry vision episodes. This continued on into 2007, my worse year yet, at that point…
I was found to have a hiatal hernia, the cause of all that acid pain. I had gut issues and gas pains that were quite severe. They said if I removed my gall bladder, my symptoms would improve. So I had the hiatal hernia and gall bladder removal. The recovery of this surgery was my worse one yet and since. It took nearly a year for all the pain to subside. My esophagus would spasm intensely causing horrific pain when trying to swallow. I couldn’t sit up for three weeks after. The pain and recovery from the incisions took forever to heal, one of the incisions breaking open and leaving a larger scar. I’m not sure why I took so long to heal. I started passing out and feeling dizzy upon rising, seeing stars in my vision even when sitting down. Heart palpitations were worse. I had my heart checked out and they found a murmur and MVP which was minor. I saw a neurologist who couldn’t pinpoint why I was having such dizzy spells and frequent headaches. Eventually I would be diagnosed with POT syndrome. Apparently it can rarely occur after a hiatal hernia repair; something to do with the vagal nerve.
Once again, I adjusted to my new normal. I had researched my symptoms and came up with fibromyalgia back in 2006 to explain the weird sensations, burning spots and other issues I was dealing with. It wouldn’t be until 2015 that I got diagnosed with it. Until then it was simply listed as somatic dysfunction of pretty much every body region. I also noticed every time I went to physical therapy, my symptoms got worse. My fatigue got worse, my chills got worse. I suffered with odd symptoms of the flu yet I would not be sick. I’d have bone chills and malaise. Once again, after much research I found a condition called Myalgic encephalomyelitis or Chronic Fatigue Syndrome. I was eventually sent for testing, ruling out other conditions, pouring through my medical history and ultimately diagnosed. I have ME/CFS. Finally after 15 years I had the answers to the fatigue, shakiness, dizzy spells, weakness, and roving joint pains that plagued me all these years, flaring up and getting better only to flare up any time I exercised or did physical therapy. I also noticed painting my home would trigger a flare up. I never understood why I felt like I had the flu every time I’d paint. I just assumed I was allergic to paint fumes.
Fast forward five years after having my son, I got the itch. My baby was getting older and I realized he wouldn’t have any siblings to grow up with, to lean on, to love. He does have to half siblings but they live with their mother in another state and they were much older than him. I wanted him to have a sibling so all the prior pain and vow to never go through it again went out the window and disappeared as I gave my hubby the sappy eyes and made my case in regards to having another baby. He only promised one. We had talked about it. He’s 8 1/2 years older than me and he didn’t want to be a new dad after 40. He was fast approaching 40. So he made me a deal. If I got pregnant before he turned 40, we’d have another baby. But then he deployed. Eighteen months of training/deploying that we would be apart. That was excruciating. Up to this point, other than our deployment to Kuwait, we hadn’t been apart. We got lucky. He also was very very lucky to not have the same health issues that I did. So off he went to begin training for his mission. I was stuck alone at Cannon AFB in New Mexico. The arm pit base of the Air Force. Also known as the Air Force’s asshole. (sorry, haha).
This base was on the list of bases known for its high divorce rate. It is fairly isolated in a small town nearly 2 hours from the biggest little city and 3 hours from Albuquerque. I’ll never forget driving into town, hubby calling me on my cell phone from the car in front of me, telling me I could turn around and leave him now. LOL. Heck no, for better or worse, the base wouldn’t separate us. It was the most foul smelling base ever, horrific cow manure permeated the air, so thick it was hard to breath. Flies were everywhere. We were surrounded by dairy farms. Not the beautiful green pasture farms one would envision, but small muddy stinky land packed full of cows, ruining my vision of what dairy farms would be like. It made my stomach turn thinking about drinking from a cow who lived in those conditions.
Anyway, the base was awful, as my son and I both had significant upper respiratory issues the entire time we were stationed there. My son would throw up with exertion, his lips a tinge of blue, crabby, night terrors, just very unwell. Every time we left the area, his color would improve and his breathing would be better. He developed chronic urticaria and autographia at that base. He still has it to this day. Poor kid. Burning itchy skin that plagues him daily. He’s on 2 to 3 allergy meds to reduce his symptoms. Once hubby left for training and I was alone with my son at this awful base (people there were great though!) I decided I would NOT live at this base for 18 months without my husband with my son being as ill as he was there. His doctor had refused to do the paperwork that would allow us to PCS elsewhere so since he was deployed, I was allowed to move, and move I did. I packed up our stuff in a storage unit and brought what I felt we would need and moved over to Florida to stay with my mother. During this time I was able to make a trip to Maryland twice to visit my husband during training. One of those times I was extremely ill and did nothing buy lay in bed the entire visit. The other time I broke out from head to toe in hives upon my flight back to my mother’s house.
When my husband finally boarded the plane to take him to Iraq, my son and I was there to see him off. This would have made a horrifically wonderful scene in a movie as my son screamed for his father and my hubby had to turn his back and keep on going, boarding the plane while hearing his son’s angry pleas to not to leave him. We both bawled our heads off. He literally cried and screamed the entire way out of the airport, only stopping for a few minutes while I desperately purchased a toy to distract him, then he started right back up as we continued on our way out of the maze of the airport. The time away from his father changed him. He was angry when he returned. 18 months is a long time for a 3 year old little boy. My husband returned at the end of 2008. At this point I had packed up my son and I and rented a small apartment in The Woodlands, TX. This was where I spent my teen years and my friends were there. I won’t get into the reasoning of my move. I’ll only say it isn’t easy living with one’s mother. I enjoyed our time immensely in Texas though I missed my husband dearly, looking forward to every phone call or skype call while awaiting his date of return.
As we packed up and went back to the arm pit of the Air Force, my dizzy spells returned. I nearly passed out in the hotel. We stayed on base for 2 weeks while my husband out processed. He had been reassigned. We were moving to Florida! An interesting encounter at the base hotel, a lady who worked for house keeping enjoyed entertaining my son while she was cleaning our rooms. She was very nice. One day she told me I was pregnant. She said she felt my son would be an officer one day. I was curious and felt the encounter bizarre but interesting. After leaving New Mexico and nearly totaling our van on icy roads during the trip, multiple vehicles crashed around us and some flipped, we arrived in Florida to stay in a condo for the next three months while waiting on housing. On a whim, I purchased a pregnancy test. Turns out the housekeeper was correct. I was pregnant. How weird. After some scary issues, I had a baby girl! My family was now complete. I have to say, giving birth to her was a completely different experience. I read up on ways of giving birth and decided to try the ‘relaxation’ method. No, there really is no relaxing way of giving birth but what I did learn is that when you tense your muscles during a contraction, it makes the pain that much worse. If you relax your muscles through it, it’s absolutely bearable. Who knew? Apparently the women of old. I tried it, it worked and I read my magazine the entire labor until the time to push. This time, I felt the urge. She was an easy delivery outside of her shoulder getting stuck. And guess what else? It was just over a month shy of my hubby’s 40th birthday. 🙂 I made the deadline after all. And once again, my health was a bit better being pregnant. And no, I don’t plan on getting pregnant again. I can only pray, knowing what I know now, that my kids do not get the health issues that plague me. I’m terrified of that.
So fast forward to hubby retiring, we moved to Idaho (It’s a lovely place) and I was happy. I had a few good years with mainly migraines, stomach issues, acid reflux, POT syndrome and minor flare ups of my ME/CFS and fibro. I was doing alright. Even my insomnia was under control. So there came November of 2013, the weather turned, it was cold. I wasn’t use to the cold winters of Idaho after being in Florida for the prior 4 years, the heat and humidity making me dizzy and weak. And then my fibro started acting up. I pushed through it, exercise being good for fibro, joined the YMCA and discovered my love of running. It was exhilarating. Then I developed shin splits. If you’ve never had them, they’re excruciating. Every step hurt the bones in my lower legs. I switched from running the track to running on the treadmill. This didn’t hurt as much.
During this time I developed ulcerative colitis. WTH! What next? Seems I could never catch a break. I wouldn’t wish this one on my worst enemy. Leaving the house was quite the battle. Never did I go anywhere without a bathroom in sight. Once diagnosed, I was given the meds for it and realized I had a sulfa allergy. The meds are in the sulfa family. I also had a sensitivity to oral steroids, the second line of treatment for UC. So that left me with little option. I had a sudden gain of 20 pounds out of nowhere. I tried changing my diet, every natural remedy out there to no avail. I was living in another nightmare. To keep my humor, I’d create parodies of different songs singing about colitis and the woes of it. I had to keep my spirits up. I also kept going to the gym. I’m one stubborn girl. My body looked great, minus the weight gain and I was working on losing that. I knew my schedule with colitis and I seemed to be ok after 11 am until around 1pm so that was my gym time though I did go running to the loo on several occasions.
In February of 2015 I had another flare up. Blurry vision, shakiness, dizziness, and the worst brain fog out there. I had a CT scan which didn’t reveal a stroke but I was left without answers. My fatigue hit and working out became a huge issue. I would start to get headaches and dizziness every time I attempted to jog on the elliptical or treadmill so I had to stop. In March I developed intense chest pain that sent me to the ER. They had no idea. I went back a week or two later. This time they said my heart appeared enlarged and mentioned in passing that my potassium was low. Went home and researched low potassium and sure as shit, all the chest pain can absolutely be due to low potassium. Seems my body is much more sensitive in potassium shifts. Got on potassium and my chest pain got better and I lost 10 of the 20 pounds. I tried to go back to the gym but it made my dizziness and fatigue worse so I threw in the towel. I ended up paying for that damn membership for at least a year after, still clinging to the hope of one day returning.
It was during this time that I entered into a study for ulcerative colitis in return for a free DNA report through 23andme. I got a copy of my raw genetic data and used various health sites to learn about my genetic code. Thankfully, no genetic conditions were noticed but what I did find to my ever elation, was that I have a significantly rare metabolic mutation that is responsible for metabolizing NSAIDs and blood thinners. This double mutation finally explained my bizarre and awful reactions to Motrin and other anti-inflammatories. Elated because I could finally put a name to it and explain to doctors and ER staff when they just assume I’m a junky looking for my next fix of pain meds, that I have a medical condition that doesn’t process typical pain meds. HA!! I wanted to shove that in all their smarmy little faces after all the times I was treated worse than dirt when seeking help when I’m in pain. Of course by then, I’ve learned to avoid the ER as much as possible anyway since they never have any answers for me and if they do medicate me, it doesn’t explain the issue that just comes back to haunt me so what’s the point?
Around this time, my leg went numb on me. Summer came on and a new form of brain fog and fatigue hit me. I was already experiencing my bone chills, achy flu like muscle pains and sluggish. Summer took it to a whole other level. Words came out backwards, I’d forget what I was doing, thinking, everything. I was a mess!! I had to learn to take notes, go slow and rest as much as possible. My vibrations started, electrical currents running through my entire body, my right arm would go numb off and on, and a host of other crazy symptoms. I began keeping a list of all my weird stuff. I was diagnosed with fibro and ME/CFS and this is when I asked about my numb leg and if it was part of fibro. I didn’t notice it in my foot, though later testing would reveal a lack of sensation there as well. Nope, neither fibro or ME/CFS should cause my leg to go numb so off to the lab for an MRI to look for brain lesions to rule out MS. Guess what? I have brain lesions.
After pouring through my medical records and seeing the pattern of flare ups, symptoms and neurological issues, I thought for sure I ultimately had MS. Maybe MS rather than ME? Maybe both since I have PEM (Post exertional malaise, classic ME symptom). I was sent to a neurologist for further work up feeling like I finally pinpointed what else was going on as I truly felt that my ME/CFS didn’t explain some of the neurological symptoms such as my numb leg and blurry vision in one eye during flare ups. The doctor was a gem….I”m being sarcastic. My record shows I’m an overly anxious female who should see a neuropsychologist… once again…. She did not look at even one of my medical records that I brought with me to show the history of my symptoms. Not one. Keep in mind, by this point, I was about a year out post flare up even though I was still having symptoms, some had improved.
The oddest of my symptoms is what I call my vibrations. I have yet to figure out what the hell is causing the electrical current to run through my entire body, at times, strong enough to be felt by my husband and my physical therapist, in particular, my thighs. It feels like all of my cells in my body are dancing. The volume can be high or low, but they are ever present. I was put on amitriptyline for nerve issues and the volume eventually turned down for the most part. I still get flare ups out of nowhere for weeks on end where the volume is much higher and I feel it throughout my body. I also started having muscle spasms in multiple areas of my body along with fasciculations. EMG and nerve conduction study was abnormal along the ulnar nerve in my right hand but later was told it corrected with temperature. He never checked my legs. Did I mention my numb leg? A repeat EMG was normal. Good thing I can check off ALS.
I started having issues walking. Typically, I’m a fast long stride walker. Military will do that to you. I noticed I was walking slower and felt less graceful. I had several falls down my flight of stairs, the 3rd time being the charm as I landed ungracefully on my outstretched hands and they thought I broke my scaphoid bone. Damn did that hurt. It was during this experience when I was sent to the surgeon that I realized there are a lot of really dumb doctors out there. My surgeon had my MRI report of my left hand, the one that hurt considerably and wouldn’t get better. It said I had torn a tendon around my pinky area and had inflammation in my nerves. Guess what he told me. He said I was born with the torn tendon and that my pain was due to a ganglion cyst that was noted in the MRI report…… Yea, he said that. Needless to say, we left there in a stupor and returned home, splint on left hand and said to hell with him, it’ll heal. Should I count my blessings that he didn’t mention hysterical female?? Hmph..
I seem to have a much slower recovery time as it took months for my hand to heal and even now, they’ve been added to my list of joint flare ups, hurting to squeeze my hands, tingling, and the ever odd pattern of numbness in my right hand (had prior) that doesn’t make sense or follow the nerve lines. My whole medical history never seemed to make much sense. One thing that I did get out of all this is a prescription for oxycodone to reduce the pain in my throbbing hand which opened up a whole new world for me. No, not a drugged induced high, but a sudden burst of energy and lifting of the awful heavy limb fatigue I’d been battling for so long. Who would have thought? I have such odd reactions to medications, including opposite reactions to some drugs, that rather than make me high and sleepy, it gave me energy AND reduced my muscle achy pain. I had a small part of my life back.
Back to my aching legs. I think the worst pain for me is that my legs hurt. All the time. It’s not like the roving joint pains that flare up for weeks or months and then suddenly disappear or move on to a new location. My leg and hip pain are constant. Remember the muscle pain in my hip, pelvic floor dysfunction from back in the day? Yea, that never got better. This time my left side joined the party and I couldn’t put any pressure on my left leg at all or the groin pain would be through the roof. I saw my doctor, they sent me for xrays, nothing was seen so I was sent to physical therapy…. again… As mentioned, pt makes me worse. Well now that I know I have ME/CFS, that makes sense. Over the next 3 years, as it started back up in 2015, the pain in my hips/groin/legs got progressively worse. I could hardly walk. I had to take breaks often and rest (ME/CFS) and sometimes rely on a cane to help me. Eventually I moved up to a wheelchair. It HURT to walk!! I went to doctor after doctor seeking help for my leg pain. THREE YEARS!!! It took THREE YEARS to finally get one of my doctors to order an MRI. What the hell is wrong with our medical community today? If something is that painful why send them to PT BEFORE looking into the problem? Money should never be a factor in a patients care. Insurance should not have a say in our medical care or ever contradict or dictate a doctor’s orders. Thankfully, my insurance has never denied a testing request. NOT ONCE but damn if my doctors have refused to even try. At this point I had lost my fabulous doctor who had always looked into things for me. Now I was back to being stuck with subpar care and being treated as the hysterical female once again. They couldn’t SEE the problem so it must not exist. They see horses and ignore the zebra in front of them.
One MRI later and it’s discovered I have bilateral labral tears of both hips and bone marrow edema in my pelvic bones. Huh. Something they can see…. So off to the orthopedic doc to evaluate my hips. Due to all of my health issues and symptoms he didn’t think I’d benefit from the surgery. Apparently it’s worse recovery than a total hip replacement, you have to do one at a time and it can take over a year to heal from. And I’m slow to heal… No explanation in regards to my bone marrow inflammation. So off to PT once again. This time with new information to avoid flaring up the labral tears that prior PT caused issues with. My fatigue kept getting worse, my fasciculations, muscle spasms, malaise. Winter was coming. I’d already been to rheumatology multiple times and ruled out those conditions and yet no one would explain the excruciating pain in my bones, my legs, my hips. No one. I went to multiple specialists for all my ailments. Saw different neurologists who kept ruling out MS but never giving me any answers only blaming my lesions on migraines and no insight into what I’m going through. The frustration is mind boggling. So I asked for a bone scan. I have bone pain so why not scan me. I finally talked my doctor into ordering it and was happy to get a glimpse into my body as I had secretly feared cancer must be ravishing my body and we’d finally have answers to what ails me. They only scanned my hips….. WTF. She said I could have a body scan and yet she only ordered a hip scan. Incidentally, they found a hot spot on my lower left abdomen. I had lower abdominal pain on that side so they sent me to a gyn oncologist. Maybe I’ll finally have answers. Turns out I had a complex cyst in my ovary but it shouldn’t cause a hot spot. Another mystery.
After repeat ultrasound, the cyst is gone and no explanation. They had initially said it was a bladder diverticula but guess what, I have urologist too. I have Interstitial cystitis and a neurogenetic bladder in addition to all the other fun issues I have to contend with. She adamantly denied the diverticula. Also discovered the person who wrote up the report for the bone scan stated it was in my right side, not my left….. If I could only show the face I’m making right now. I know for a fact it was on my left side as he made me drop my drawers and scrub the area, he was so baffled by the spot. He showed it to me. It was on the LEFT!!!! Anyway, the urologist stated after 2 scopes prior she would have absolutely found a diverticula and that the pictures of it don’t even appear to be in the right spot. So once again, no answers.
Back in 2013, just prior to my hubby retiring and our move to Idaho, I developed severe burning pain in my right breast and arm pit. It eventually settled around my right nipple and right side of my breast. No other symptoms at that time. I went to the doctor and they said I had shingles. Where’s the rash? I refused the drugs. The pain continued for several months. My breast hurt, my nipple itched and it appeared to look a bit different than it had. After moving to Idaho, my doctor sent me for an MRI of my breasts. My right breast was fine but my left breast showed a small tumor, most likely a fibroadenoma per the radiology report. The pain eventually faded but still flares up on me. The itching has gotten intense as of lately. I happened upon my report when looking through my records and it stated a clinical correlation is recommended and if symptoms corelate, a biopsy for further evaluation. Never was this stated to me. Just another mystery.
Around 2015 I also had a reduction in appetite. It has slowly gotten worse along with bouts of nausea and at least once a month severe nausea episodes that last around 15 minutes causing me to run to the toilet and either dry heave for a while or vomit. My appetite has gotten worse. Sometimes I have stomach pain after eating, bloating, I feel full with small amounts of food. Other times I feel famished! I brought this to my doctors attention last year. I’ve had upper and lower scopes. The scope before last revealed blood in my stomach and an esophageal stricture. I went in due to choking on my own phlegm and saliva, foods, drinks and spasms. I had the feeling of something stuck in my throat quite often. The doctor simply shrugged her shoulder and said she didn’t know what that was from in regards to the blood and only motioned the stricture in passing. No real follow up care and they never gave me my medical records so I could look over them myself. They said my esophagus appeared to have eosinophil-esophagitis but the biopsy was negative. They thought I could have SIBO. The exam went nowhere and again I was left with little if any answers. Just more questions. I’ve had esophageal spasms on and off for years, especially since the hiatal hernia repair but recently I was choking quite often on things and it seemed to be getting worse. This too seems to come in flare ups, sometimes worse than others. I had another scope with a prior doctor as my stomach pains are now constant. What use to come on about 4 in the evening and last a few hours, laying on my side or back the only way to relieve the pain, now was coming on when I awake and lasting all day long. I’ve had this consistently for over a month now, maybe two. The scope only showed inflammation in my stomach. No mention of blood or even the stricture. He said it wasn’t there. I trust his evaluation. My blood work was normal but he was very concerned about my weight loss. So simply gastritis but thus far, not one drug has helped. I started on a new medicine, a liquid as I was choking on the pills and I refused to choke 4 times a day for a month. I’ve been on it several days now and no symptom relief. Why is my stomach hurting so much!!? I’ve tried bland diets, fasting (easy to do without an appetite) but nothing.
Another issue I have which also seems to come and go is bruising. Once again I brought this to my doctors attention last year (2018) as my legs were covered in bruises. Blood work was fine though my sodium was low. My lymphocytes were low at the time and I noticed they’ve been low on a few occasions but I was told it was fine. About a week ago I felt a sudden burning pain in my left knee. I pulled up my leggings and noticed a new bruise forming on the inside of my knee. No injury, just a blood vessel that seemed to explode on me out of nowhere.
At the end of July last year, I was flying home from Texas after visiting my brother. Part of me was there to see if the warmer climate would be better on my condition as I’ve discovered the colder climate is brutal to me. My pain is very intense during the winter and I hardly leave my home unless it’s for a medical appointment which I try to limit during winter. On the flight home I noticed a large swollen lymph node in my groin. It didn’t hurt and I didn’t have any infection that I was aware of though I do get a spot where I shave that does get infected from time to time but it was doing ok at the moment. I discovered that I had several swollen glands on the left side. I went the doctor and she said it was due to a cut on my leg from shaving…. again if you could see my face. I have nicked myself several times throughout my life while shaving. It’s a rite of passage, haha. At that point I had a very tiny nick on my leg. Not infected, very shallow. How would I come up with at least 3 large (to me) swollen lymph nodes on my groin from that??!! Anyway, she told me to wait two weeks and come back if they enlarge, I get more or they don’t go away. Well, the right side started swelling up. So I had about 5 on the left and 1 or 2 on the right at that point. I went back to see her. I had also started dropping weight around this time. I had eventually lost the added 10 remaining pounds after that sudden weight gain back in 2014 but I stayed at 140 ever since. The doctor simply told me that my glands only appeared swollen due to the weight loss. I think I want to pull my hair out at this point. In addition, a few months prior, I had pointed out a lump on the back of my neck. Turns out, it is a swollen lymph node. At the time she simply shrugged it off as no big deal and since I had had one on the right side that was enlarged for years, I didn’t think anything more of it. But now I have the swollen lymph node in my neck plus now 9 in my groin area. Since that appointment, I have several more swollen lymph nodes on both sides of the back of my neck, some on the front, my groin, and occasionally my arm pit. I’ve also lost over 20 pounds and weigh a whopping 108 pounds. And yet, because my blood work was normal, it’s no big deal…..
I got pissed. I got thoroughly pissed off. I’m so freaking tired of being ignored. I’m tired of hurting. I’m tired of being tired. I also itch all over and now deal with sleepy fatigue, something that is new to me as my fatigue from ME/CFS and fibro is muscle fatigue. I’ve learned from my Facebook groups that there seems to be two types of ME/CFS peeps. The sleepers and the sleepless. I’m the sleepless. I only sleep when medicated due to my insomnia and no matter how little sleep I get, I can’t nap. I’m awake. But now I’m sleepy!!! I have both. This is not MY normal. Something is wrong and I can feel it in my gut and no matter how many times I’ve asked, I’m brushed off, disregarded or treated like a hysterical female but this is MY BODY!! I know my body and something is wrong. I’ve spent many a nights talking with my hubby about feeling like I’m dying and being afraid that I have cancer and that by the time they take me seriously it will be too late!!! What else needs to go wrong before they wake up and realize this isn’t in my head!? I’m on copious amounts of pain meds from all the pain I suffer, I am hardly able to care for my own self, let alone, two kids, the house, and my hubby. The caretaker, the one who handles everything, the glue that holds it together is frayed and slipping and no longer capable and I’m frustrated and scared and freaked out because I never ask for help, I never ask for anything as I usually handle it all and now I can’t handle anything!
So when I saw my gastrologist who I’d only seen once about 5 months prior after changing doctors before, he took one look at me and instantly got angry. He noticed my weight loss and asked me what was going on. So I told him. I told him everything I’m dealing with. On top of that I found a lump in my breast. He was very concerned. He was pissed that no one has sent me for further testing. Finally someone who believed me.
So I had my appointment with my civilian provider to discuss my breast lump and I requested an MRI. I had one prior to compare it with and I don’t do mammograms. Horrible previous experience and I have implants and won’t go through that ever again. I told her I was angry and that something is wrong and no one is doing anything. She got defensive. She said she has followed protocol for my symptoms and what else can she do??! She then agreed to order a CT scan of my chest since I had complained of this cough I’ve had for over a year now and she offered to send me to a hematologist oncologist. Finally. Finally I’m getting somewhere.
I have pelvic bone marrow inflammation and bone pain. Drastic weight loss not just skinny but my muscles feel atrophied no matter how much activity I’ve had, my skin is sagging off my bones, my blood vessels are popping out all over and I look sick. Swollen glands in multiple sites, loss of appetite, nausea, a cough for over a year, fatigue, body aches. HELLO??!!! Is anyone listening to me??!!!
So here I sit, CT scan is done (waiting on results), MRI is next week, and my doctor got my referral to the oncologist wrong. She simply put weight loss to see the hematologist oncologist…. I called them up (oncologist) and told them what all was going on and they said they’d get on it right away and have her fix the referral. So they fixed it. Sort of. They put lymphopenia as the diagnostic code but only in ONE location!! Do they not listen??!! (my doc). I have it in multiple locations which yes, makes a difference.
Gone is the compassion of doctors who seek to heal and help those who are suffering. What the hell happened?? Why do I have to fight tooth and nail to find out what’s happening to my own body? How will a doctor ever know MY body in a span of 15 minutes when I’ve spent the last 40 years in it? But no, I’m just the hysterical female. An overly anxious individual who’s mind is creating all the physical symptoms as a manifestation of my own anxiety. And yet, I’m the logical one.
They get angry when people use Dr. Google but they fail to do their own job. They are clueless on all the conditions and diseases affecting people right now making assumptions that were all horses when med school teaches them that zebra’s do exist. ME/CFS is not taught in med school. It’s a shame. But even with ME/CFS, those who research and understand this condition would know that what I have going on right now is not part of it. There is much more going on that once you’re labeled, they fail to see. Again, it’s my body and I know when things change. When new symptoms start up, when things are different than they should be.
So here I sit, reflecting back on all of my health issues and experiences with the medical system. Embittered and frustrated. Waiting to see if I’m truly dying or not. Is my ME/CFS just f***ing with me or do I have cancer eating my body up and they failed me. They failed to listen to the woman who cried. They ignored my plea for help. They failed their oath; To first do no harm. I may have fallen through the cracks. I may have been harmed by their own ignorance and self importance. Their own misjudgments and biases. Their hurried approach and simply a job, not a passion or healer but a paycheck.
During all of this, I failed to mention that I have not one but two primary care providers. One is a civilian and the other the VA. All that I have shared had been shared with both. To the weight loss, my VA provider told me to get on the keto diet. She too shrugged her shoulders and told me that she didn’t know what to say. No suggestions, no thought process, ideas, tests, further investigations, just change my diet. She too denied my requests for MRI’s and testing on my hips when I complained of the bone pain and leg pain to the point of feeling like someone was twisting my groin and my muscles feeling like they want to curl up off the bone. No one cares. Do they think that because I have my pain meds I don’t need anything else? Because I’m rated 100% with VA disability I don’t need treatment or care? That I must have reached my end goal, won my claim, have my drugs, that’s it? That’s all I want? Do they really see me in that light? Do they not hear me crying out for help? To understand WHY my legs hurt so bad? Why I need a scooter when there is any walking? A wheelchair when I leave my house. They denied my request for those by the way. I had to purchase my own. They denied my request for a family caregiver because at that point my condition was always fluctuating, like a roller coaster ride and not 100% consistent yet I’ve not been 100% right in a very very long time. I’m now at that point that I should, in theory, qualify. Driving is more difficult for me, the last thing I’ve struggled to maintain as I drive myself to appointments and my daughter to school. Rarely have I cooked dinner and when I do, it takes hours and a chair in my kitchen as I can’t stand for that long and then I’m exhausted after. I can’t remember the last time I chased my kids around or tickled them with any effort and fun. I can’t remember the last time we really went out as a family and did anything that didn’t affect me. I live at the waterpark during summer as being in the water is the only way I can move my muscles without the heavy weights holding them down. I have to use my scooter to get me to the lazy river. I don’t ride the rides, I simply sit on a float and move my legs around, trying to get in some exercise in the only way that doesn’t hurt as much.
I miss going out to eat with my husband without feeling bad for doing so, simply leaving the house is exhausting. My life is not my own. I feel like a failure as a parent. They know I love them but they too suffer my illness. The guilt eating me up inside. My husband who misses out on a large chunk in life due to my limitations and yet he still stands by me… out of love…and obligation. He’s loyal, I’ll give him that but it doesn’t stop the guilt that eats me up. He has no idea how very difficult it is when I do give of myself. The pain, the fatigue, the exhaustion.
When will it be enough? When will I finally just quit and let my mind go? I live for my family. My husband, my children, holding on just for them. Barely, but I’m still here. Pretending to be better than I feel. Pushing harder than I should keeping me in this vicious cycle.
If my tests turn out normal once again, if I don’t have cancer and it’s ‘only my ME/CFS’ then I will never look into another health issue again. I will never seek out medical care or testing any more. I will simply ask for palliative care and be left alone. I’ll seek whatever caregiver help I may qualify for and just live. Just live for my kids, my husband, to watch my kids grow up. Will I get that chance? Is it too late for me? Is it really living if I’m just existing? Do I have cancer?