My Health Issues and Medical Journey So Far
by Niki Wyre
This week has been hard on me with the weather changes from Hurricane Michael passing through. Being disabled from chronic illnesses is not an easy road, and sometimes I need to unplug while I try to cope with the pain or just plain rest. I must of started this blog ten times before but was unable to put my voice into words yet. Now that I have had a few days to rest, I am ready to dive in with you all on what a medical mess I am. It is not an easy read, so fair warning, but if you would like a whole picture of me, my past and how I am…here we go..
I was 3 years old when I first starting complaining about knee pain after dance class. My leg knee in particular bugged me and developed a large lump behind the knee cap. I was 5 when I was diagnosed with a Baker’s Cyst on the back of my knee. “A Baker’s cyst is a fluid-filled cyst that causes a bulge and a feeling of tightness behind your knee. The pain can get worse when you fully flex or extend your knee or when you’re active.” – Mayo Clinic. So needless to say I had to give up my dancing and cheerleading as a mini me due to pain. They told us it would probably go away. At age 18 I would undergo exploratory orthoscopy on my left knee for unexplained pain after seeing specialist for a work related injury. Nothing showed on MRIs or imaging and the doctor accused me of faking pain to get off of work. Instead they found my friendly Baker’s Cyst had turned into a ganglion cyst, wrapping itself around the base of my knee cap. My orthoscopy turned in to them opening up just below my knee cap in order to remove the ganglion and clean out the joint. I never recovered fully from this, and my knee has become progressively worse. Now I have large swelling behind both knees all of the time.
When I was 6 and about to finish my kindergarten year, I went with my family to go fishing in a nearby lake that was wooded. I seemed fine for awhile, then my parents found a tick in my left ear. They removed it and I went on to school. I can vividly remember coming home from school, going to my friend’s Lexi’s house to watch Gremlins while she ate cat food (no idea why still lol) and then heading home. All of sudden I said I was freezing and crying. I remember my Mom piling on blankets including sleeping bags but I was just so cold. The fever started. My Mom knew something serious was wrong. My normal low body temp (96.7-97.4) was climbing over 100 and I was just shaking. My Mom packed me in back of station wagon in blankets and took me to hospital. They turned me away because my temperature was not high enough. She tried multiple times and finally they felt my fever was high enough to investigate. This was wasted time for my health. You see I contracted Rocky Mountain Spotted Fever from that tick and it had bitten me right on a nerve root that was damaging part of my brain. As luck was not on my side, they roomed me with a kid that they didn’t know had meningitis, so I contracted this as well. I can’t remember most of this but I do remember the spinal tap vividly. At 38 years old I still have nightmares of this experience. They gave me a luck Care Bear and told me to count to 3 and it would be over. “1,2,3,1,2,3,1,2,3,1,2,3… “ over and over again I quickly counted. It took several attempts before successful. After several weeks in the hospital I was finally able to go home but was too weak to do things like play. The brain damage from the tick bite and illness erased my memories before that day. I would be carried outside to watch kids play in my yard. It is still something that still breaks my heart to this day. Not being able to play in my own yard or having to watch those kids play in my yard and drink my juice boxes so happily. I had to relearn basic things like how to walk, run, and learn to read all over again. I was in special classes for reading to catch back up to my class. I believe that is why I love reading so much to this day.
After the Rocky Mountain Spotted Fever and Viral Meningitis battle, my health never got back to a healthy kid. I got sick.. A lot. I caught everything going around. Colds for other people turned into sinus infections, bronchitis or pneumonia. My teen years were hard with this as I was sent to school sick often by my stepfather. He believed I could only stay home if my temp was 101 or higher. Anything else? Off to school. There were days I laid on the carpet in an interactive class and just slept I was so sick. More than one teacher commented that I should of stayed home if I was that sick or have a parent pick me up. How does one explain that they aren’t allowed to go home? That you have no one that would pick you up? I got in trouble if the nurse’s office called home.
When I was 18, my mother decided to change me from birth control pills to an injection. The BCP’s were to control my cycle and keep it regular. Once the shot started, things changed for me drastically. I started putting on weight rapidly. My cycles were absent again or very heavy. I started getting hair that women don’t want and over time became very self conscious and depressed over this. Going back on the pill later helped symptoms some but once that ball got rolling there was no stopping it. Years later when I was married to my ex, we tried to conceive. No luck. I went to the doctor many times crying about my symptoms and they told me things like “That’s normal”, “You are just depressed” or my favorite “some women are just hairier than others”. My mother found an article in a magazine that sounded just like me and told me to look up PCOS (polycystic ovarian syndrome). It was like I was reading my chart of complaints. I printed out WebMD information and took it to my doctor. He read it and was like “Wow, this sounds like you”. You think? He then asked me what I needed to do to diagnose it. I showed him WedMD printout. Tests all came way positive. He was floored and said he didn’t know what to do next. I once again gave him printout, so he sent me on to reproductive endocrinologist. I tried hormones, Metformin (a diabetic medicine that is used sometimes to aid in fertility in those with PCOS), charted my unpredictable cycles etc. Things were not to be though as things imploded at home. I was accused of hiding this health problem (that I did not know about) to trap him in marriage. Funny since he married me to not incur more medical debt uninsured since I was in the hospital a lot…
So about those hospital trips.. When I was 20, I had my colon removed due to telescoping, prolapsing toxic megacolon. Say that 3 times fast. Basically I was born constipated due to having a very lengthened and enlarged colon. Like super long. I inherited this from my Mother, whose colon was on display in USF’s medical college for awhile due to sheer size of it 7 years prior to my own surgery. Our cases were well known in the gastro community due to rareness, the surgery that was performed (a subtotal colectomy without bag) and resulting complications. I was on a clear liquid diet for 12 weeks before they could schedule my surgery and still bowels were full. As I was waiting for surgery, I did prep they gave me the day before and went in to toxic shock. I remember calling my Mom to tell her I loved her and goodbye as I felt my body fading away in my duplex alone. I was taken to hospital and my body started with hypothermia. I can briefly remember chattering teeth, shaking uncontrollably and being wrapped in heated foil blankets to bring up my temp. They stabilized me with a few hours of rest before I went in to scheduled surgery. At one point they brought in gynecologists and oncologists to confer over my enlarged ovary. In the end they kept both of my ovaries in (which wasn’t reason they went in first place), removed all but last few centimeters of my colon, before bringing down small intestines to reattach to rectum. How did they do all this? Lots and lots of surgical staples. My x-rays are always fun to look at because I still have roughly two dozen staples holding everything in place. So far I have only met one other person with this process, my Mom. My incision took 33 staples to close it. After surgery, I experienced multiple complications sending me right back to the hospital after being admitted. I had two bowel twists and a blockage. All within 3 weeks of my surgery. But the fun did not end there unfortunately.
A year later, I started getting really sick again. Like all the time. I spent the next 6 or 9 months constantly ending up in local emergency room due infections. A doctor there exclaimed on my low blood count and told me if I didn’t find out why I was getting all these infections or losing blood I would never live to see 30. He said if I did manage to live that long I would look like I was 80 years old. Later I would find that I had adhesions at my anastomosis (the joining of my surgery) and had been losing blood for a long time. I required a blood transfusion, that the hospital tried to deny due to lack of insurance. Imagine that. I sat there with a pad for blood I was losing as I battled with person who finally approved it. To stop the bleeding I required an argon laser to cauterize the joining and reinforce it. This is something that I have had done another 5 or 6 times since. The infections and complications never really stopped though. One hospitalization totaled 8 ½ weeks and included a pill camera to find out why I couldn’t keep anything down and had abdominal pain.
Once my family helped assist me in leaving my ex, I was no longer depressed but started having abdominal pain yet again. I was in ER several times with my primary office’s doctors saying nothing was wrong. After a bad attack, I had to crawl to my door for a friend to take me to the ER again. An on call doctor asked why I hadn’t had a certain scan done but found out my primary did not order it due to cost. Once they did the scan and saw my liver levels, I was scheduled for surgery the next morning. You see I had a gallstone blocking a tube that backed bile in to my liver. Had it not been caught on this visit, my liver would of died. The stone was large and had been there for awhile. The other doctors never checked because “I was faking it”. Sigh.
One thing that plagued me from a young age was extremely bad bone pain. Since it was in my long bones of the arms and legs, the doctors keep telling us that it was “growing pains”. By the time my young 20’s came around this excuse was not working any more and my joints were really starting to hurt. I was just so tired all the time. When doctor said I was just depressed or looking for attention, my ex got on board with that. I was accused a lot of times of faking it or just being lazy. When a family member experiencing joint pain and other symptoms as well found a rheumatologist that started investigating why they were on pain, I immediately asked for a referral. My rheumatologist was very nice. She ordered labs my doctors didn’t before and imaging specifically of lower legs since I could barely walk on them. At our recheck to go over everything she was floored. That leg pain was dozens and dozens of microfractures, in various stages of healing due to severe Vitamin D deficiency that made my bones look like a ruler. I had Osteomalacia, known as adult rickets. It causes weak bones, bone pain and weakness. So many years I suffered with this and no one helped or x-rayed my legs. So many years my pain was ignored. I wept. I was also diagnosed with really bad hypothyroidism at this visit. So I went on prescription Vitamin D to get my levels up. 50,000 iu three times a week as I was so extremely low. I am still on this high dose today over a decade later. She thought this was the cause of all my pain and fixing my levels would ease my suffering. She was wrong…
On my next visit, the swelling on my knees and fingers joints were more evident. So time for more investigating. Finally I had names for my issues. After testing I was diagnosed with seronegative Rheumatoid Arthritis and Fibromyalgia. I felt validated finally having answers. I felt anger at all those doctors and people in my life that wouldn’t listen or believe me. I felt extreme sadness for my own future dealing with all these issues and giving up my hopes of going through fertility treatments to have a child. I have been through over a dozen medicine / treatments for my Autoimmune Arthritis. After emergence of new psoriasis 1.5 years ago, I have now been re-classed as Psoriatic Arthritis.
Since my diagnosis with Autoimmune Arthritis, my world totally changed. I had a swift decline in mobility due to pain, swelling and fatigue. I could no longer function in my position in family business so I had to give up a job I loved because I simply could not perform the tasks needed. We tried shorter hours, longer breaks and even working from home. It just became too much to continue. So after spending most of my cashed in 401K, I finally filed for disability. Whatever your position on people on disability, you should know this is not an easy process. They don’t just approve a lot of people. I spent almost 5 years fighting for mine, including multiple appeals, hearings and doctor exams. I finally broke down and got a lawyer after my second denial. They wanted more tests as proof. I had no insurance and was stuck with the few items the county’s free clinic system could provide. I had their own mental doctor tell them that I could not work in normal setting from my PTSD, depression and social anxiety alone. Then you add my medical issues and pills… You would think it was open / shut but not for a system that hopes you will get tired of waiting and move on. The day I got my acceptance letter was bittersweet. Happy that I could finally get Medicare and the money I was owed but sad to be officially disabled. The little medical issues they kept adding on where just the cherry on top.
I developed an issue that I have dealt with this past decade in which food started getting impacted in my esophagus, not able to get things down or vomiting up undigested food. After scope and biopsies, they have to stretch my esophagus because my new diagnosis was Eosinophilic Esophagitis. This happens when your lining of your esophagus fills with eosinophils (part of your white blood cells) and causes a narrowing of your esophagus. Yay. I have had to have my esophagus stretched many times. Not too long ago, I was experiencing a lot of hiccups, upset stomach and chest pains after eating. Turns out not only is my EOE flaring up but I developed a sliding hiatal hernia. Combined with EOE, chronic gastritis and not having a colon.. well it has not been fun to deal with.
And finally the past few years I have been dealing with presyncope and rapid heart rate. I could be laying in bed and my pulse was 120-135 beats per minute. No bueno. So after a particularly bad almost passing out moment with chest pain, my journey started at the emergency room again. I have been on a beta blocker to lower my heart rate since then. I have undergone testing (many non pleasant) but all my electrophysiologist can say is the “God just made your heart beat faster”… okay dude. He said due to all my medical issues and medications, he cannot pinpoint the exact reason why. The only advice he has given is to fat shame me. It is very frustrating to deal with on a daily basis. I have come up with a set of rules to keep me from landing on the ground with my limbs jerking as my vision greys out.
1. No lifting arms above heart level while standing.
2. Do not bend over and try to pick up something.
3. Do not get overheated.
4. Don’t get up too quickly.
5. No holding pups while standing.
Easy right? Not really. I have taken a header in to the fridge, crawled down the hallway to get back to room and many episodes happen when I just get up to go to the bathroom.
It has been a crazy ride so far and here is a quick list on my health issues I have dealt with on a daily basis.
So far I have been diagnosed with / treated for the following:
Rheumatoid Arthritis (now Psoriatic)
4 herniations in lumbar spine (2 bad, 1 medium and 1 small)
Osteophytes in spine
Palisaded neutrophilic and granulomatous dermatitis
Arrhythmia (unknown case)
Hiatal Hernia / gastritis
Crepitus of the knee
Yes, that is quite an impressive list. I have undergone physical therapy many times. I currently use a aquamarine colored cane for short distances, a blue rollator (sporty walker with a seat) for slightly longer distances where I would need sitting breaks and a wheelchair for more than a few thousand feet.
I take so many medicines, that I am hoping I can cut back on if / when my medical cannabis card is approved. (Payment went through finally so fingers crossed.) I take a ton of pills each morning, each night and a couple pills as needed in between. Depending on my treatment for Psoriatic Arthritis, it could also be a pill taken daily, weekly injections at home or infusions in clinic. This is my life.
Weather changes, stress, infections etc can all cause serious flare ups, like I have had this past week, where I can barely move. When my ribs are affected, I can barely breathe. Currently my back is wrecked between the herniated discs, immune system attacking it and Fibro flare.
So I hope this in it’s crazy way of honesty and bearing my medical journey let’s you know a bit about me. About why I am sometimes quiet or answer those questions to medical issues I alluded to in previous posts.
For all those out there fighting as well, don’t give up. Hang in there.
I hope to give you more positive updates soon.
<3 Niki Wyre
P.S. I run a support community for people with Autoimmune Arthritis It is called RA Chicks: Women with Rheumatoid Arthritis. You can find our FB page here, our growing and very active group RA Chicks : Women with Rheumatoid Arthritis Group on FB or our website RAChicks.com. Though originally formed for women with RA, we have grown to include all gender identities and forms of Autoimmune Arthritis. Hope to see you there.