It was historic...A huge freeze with snow in San Antonio! It didn't last a few hours, like other storms. It came and stayed for days. My friend hadn't seen or experienced snow and it was just enough that I took him outside to build a snowman. About halfway thru I couldn't breathe. I couldn't walk. I didn't have enough stamina or strength to take a step to get inside. I told Roy I can't move. I can't even put rock eyes on this poor snowman. I told him you have to take me to the hospital right now.
My growing pain
I'd been having so much all-over pain. I mean so much pain that I couldn't take a deep breath or turn my head. It was anywhere that a blood vessel might be. There was no place on me that was immune to it. Then suddenly an excruciating pain would strike right in the center of my second joint in my finger so bad I'd want to cut my finger off! Not so fast! The stab moved to the center of my calf. A pain that if I'd been standing, would have collapsed me. My hands hurt so bad I couldn't feed myself. It was the soft tissue, not the joints. I started researching. I found lots of diseases it could be but all the doctors had no ideas. I digress. That pain lasted anywhere from a couple of days to a couple of weeks...for months and no one could figure it out.
Our trip to the hospital was treacherous. If you can imagine days of ice on roads where people have never even seen snow much less tried to drive in it. We lived a good ways out of town and Roy had no idea how to maneuver on these roads but he did great. I did not want to go to the first hospital we came to because I'd had a bad experience previously. As we got closer to the one I didn't want to go to there were signs..lots of ROAD CLOSED signs on the highway letting us know we could go no further than my second choice. After arrival and waiting in the ER for 4 hours I was finally brought back to be seen. After the evaluation, I was immediately admitted...to the hallway. This was in the midst of the COVID issue so the rooms were all full. After a few days and innumerable tests it was discovered I indeed also HAD COVID in addition to 11 other ailments...lung blood clot, leg clot, pneumonia in both lungs, UTI, etc. I remained hospitalized for 2 weeks. Upon my release, within a couple of hours, I started to relapse. After the second day home, I was so sick. Roy took me to the hospital...a different hospital. There I was again admitted right away. The doctor that would be attending was brand new and out of medical school. If I could have, I would have rolled my eyes. But she was very attentive, and showed great concern. After reading my history, she took it upon herself to go back 2 years of blood work. She came to me and said , "I looked back and your blood work has been stable all this time...suddenly, you have all the markers for Lupus. We have found that COVID is predisposing people to contract auto-immune diseases, and I'm sorry but you caught one."
Searching for answers
That was Feb 2021. Neither myself nor my doctors could predict what was to come. To keep the excruciating pain to being somewhat bearable I was put on large doses of Prednisone. As a nurse, I knew one term steroids is a no-no, but we could not keep me able to function without it. My body started to protest. My hair started falling out. All I wanted was to eat...everything in sight. I was partly looking for anything that I could taste since my taste and smell were gone. My, normally size 4 frame started to expand. Within a couple of weeks, I developed ulcers in my mouth making it almost impossible to eat or drink anything, or to talk. I went to so many doctors and dentists to figure out what this was. The pain cycles continued making me bedridden and almost crazy because I am the furthest person from sedentary...I absolutely can't do it. THIS brought me to my knees. I was so tired I couldn't do anything. I was so weak I couldn't pick up our chihuahua. I couldn't turn over or breathe right. The steroids helped but not the way the doctor said it should be. More blood tests, more research. There are many auto-immune diseases, and we were trying desperately to figure out which one(s) I had.
Learning to suffer in silence
There is one that has mouth ulcers as it's main symptom...Behcet's disease. I started taking the meds for that. For several months with no change in the ulcers or anything else. I stayed sick. I'm getting very angry and depressed at how my life had drastically changed from someone who in a normal day would normally not even sit down till bedtime, working inside and outside and never stopping, to not even being able to stand and do dishes. I couldn't grasp anything, dropping everything. I couldn't touch my thumb to my pinky. I couldn't pull down my pants to use the restroom. I was completely disabled. In June I moved alone to another state. I was all alone now. No one to help me. I had family that did what they could, but they worked and went to school. A new doctor now and everything, all the testing started over. I couldn't drive, so I had to make appointments on their days off, often delaying them for weeks. I was miserable while trying to maintain my busy lifestyle. I learned to suffer in silence because I just could not lay around all the time. My medications kept changing, and my symptoms mutated. But what remained the same was the pain and those unbearable mouth ulcers. For over a year I had constant huge holes on the inside of my cheeks or the sides or tops of my tongue. They never went away. One would stay for weeks then seemed like it wanted to go away, only to have one crop up in another spot. I couldn't clean my teeth after I ate something (as you do with your tongue). My teeth started to suffer. An ulcer developed right in front on my lower gum and actually destroyed my gums covering my lower incisors to a point that the root was exposed. I was given numerous medications to swish, to cover, to just say we were trying everything. And we did. Nothing helped. All I could do was numb my mouth long enough to scarf down a few bites. What I thought would be so soothing, ice cream, turned out to be the thing that sent me thru the roof...
My full body transformation
Suddenly I started bleeding. My skin was as thin and fragile as a soap bubble. The slightest bump brought on a rush and flood of blood. I started to get wart/mole type bumps everywhere on my arms, legs. Dark spots like giant freckles started to cover my otherwise pale redheaded skin. The weight kept creeping on. I showed a friend a 2 year old photo of myself bright and glowing. He left still not believing it was me or that it was only two years ago. I'm not a real vain person, but the transformation this body has gone thru leaves me devastated and feeling like I have to cover myself head to toe. Most of the time I look like I've been in a fight with a bear.
Trying complementary treatments
About 2 months ago my neighbor saw me suffering trying to talk to her. Knowing I'd tried everything, she asked if I'd tried clove oil. I knew of cloves for tooth ache but hadn't tried it. I pulled a small bit and it burned 🔥 worse than the ice cream. I ran around trying to inhale cooling air. After about 5 minutes it started to ease. Within about 2 hours, the main ulcer started to deliver less pain. I applied the oil as often as I could tolerate. Since then, my mouth actually has days without ulcers! But all else has stayed the same. I'm a wreck but trying. The depression is creeping in every time I find myself held back from what I had planned.
One day we will figure out what is really wrong and I will have my life even if it's different.
Have you written a letter to your local congress representative to advocate for lupus research and education funding this year?