A year ago I was diagnosed with a disease that will soon become a world-wide epidemic.
I have suffered for many years with chronic pain. Pain in my muscles, joints, headaches, stinging-blurry vision, lock-jaw, fatigue, insomnia, painful feet, twitches, brain-fog, and now the incapability to maintain a core body temperature above 97.1.
Now, I don't have a Delorean or any other time machine handy, so we're going to get elementary here and use our imaginations while I take you back in time with me 16 years ago. It was church camp in Oklahoma at Robber's Cave State Park, First time I ever remember sleeping somewhere without AC. Normally the boys and girls cabins were closer to each other. This was the year we all complained because the boys cabins were actually a few miles away and everyday when we had chapel or other co-ed activities they had to be bussed in to us. That, the long drive, and the snack bar is about all I can remember. Oh and a tick. At the time I had no idea what a tick was, what it looked like, or what it did. Being from the Galveston, TX area, there was no need for education in that department. As a matter of fact, I though it was a new mole/freckle and I actually let it backpack around on me for about 2 weeks before I started picking at it and realized it was a bug. I was grossed out! I picked it, threw it away and never mentioned anything about it.
Now, I wasn't a sickly child, but when I did get sick, I got sick. Even as an adult in my 20's. The common cold for me was 3 weeks of misery that had usually turned into strep, bronchitis, or a horrible flu. I had become pregnant with my first child when I was 19 and had a few complications with pre-term contractions and thinning. He was more than healthy at birth being two weeks late and 8.5 lbs. I came home sick from the hospital. (pay attention to this part because it will show up again and there is reason why I'm mentioning this) When my son was a year old, I was again pregnant. This one was trapped in my tubes and I was not able to carry. By the end of that year (now 22) I was pregnant again. When I was in my 20th week with her I started having contractions and was told that I would lose her if I had her. I had extremely low amniotic fluid and spent many MANY days in the hospital with nothing to do but lay there with fluid being pumped into my IV. The doctors were confused as to why I couldn't maintain healthy fluid levels. I had no leakage. Baby was growing at a healthy rate. As a matter of fact, my OBGYN even called a specialist in Washington and he had said he only knew of two other cases like that and had no answers. We were able to hold out on delivering her until she was barely 38 weeks. Another healthy blessing she was! (came home from the hospital with a fever that I had for about two weeks)
With the complications of child birth and the risks, I decided that God blessed me with two children and I decided to have no more, having my tubes tied.
I was increasingly growing more fatigued. I figured it was keeping up with a house, a job a 2 1/2 year old and a newborn. Anyone would be tired. I started getting heart palpitations. I was only 24. Stress maybe? Too much caffeine? Heart monitor, EKG, heart ultra-sound all okay.
Swollen, very red feet that would turn purple in an instant. Too much time on my feet?
Visited doctor, was told I was depressed.
Sickest I had been in years was when I was 25. I remember being so miserable, but not resting.
Had EEG for possible frontal lobe epilepsy from an accident I had when I was 17. Results were inconclusive because my jaw wouldn't relax.
By this time I'm starting to get a little discouraged and started to think maybe I'm nuts.
While all this was going on I was having horrible menstrual cycles, never normal, and tons of pelvic pain.
After having an ultrasound, it was confirmed that I had Adenomyosis. Endometriosis that not only grows on the lining of the uterus, but it will grow on the outside and start to attach itself to organs. Ewe. Right?
I had it removed and was told that it would buy me a few years, but eventually it would call for a hysterectomy. The day I came home from the hospital (with a small fever and very low blood pressure) my grandfather passed. The healing process was long. Between the stress on my body and the stress on my heart.
I don't know if I was "healthy" during that time or I had just grown used to the aches and the pains, but I wasn't as sickly and my lady pain had subsided somewhat. I remember finding it very difficult to stay focused. I had a hard time keeping up with tasks and often felt dis complacent or discombobulated.
When I was 29 I went through my divorce. Now, of ALL the stresses I had ever had up till this time, this was the mother load. I got sick. Real sick. Had to be carried to the hospital sick. Had to have my hair held back for me sick. Lost over 20lbs in a month sick. I couldn't eat a thing without it burning and it coming right back up. I was a single mom trying to work by watching kids out of my house. I remember just crying in pain, but I had to make a living so I could make what was barely ends meet. I didn't ever think I'd get better during that time.
Then I lost my period. Just went away. The pelvic pain came back, the cramps were there and I'm quite sure if you ask anyone the PMS was there.
Breast ultrasound-fibrocystic disease
High Cholesterol at a healthy weight with a healthy diet and moderate exercise.
Heartburn and acid reflux like a volcano.
We were traveling home from our friend's in Dallas when we were just our side of downtown Houston and I started freaking out. Everything was going black on me and my whole entire body started to tingle. I had my now husband rush me to the ER where they did and EKG and a full work-up. My potassium levels were deathly low and my liver enzymes were out of complete whack. It was advised that I visit my PCP.
She referred me to a rheumatologist. He diagnosed me with fibromyalgia.
We felt pretty good that we had answers. I saw him for over a year. I still wasn't feeling my best, but I had just come to realize I never would ever again, and I learned to live with it.
Remarried-Happy Time
By the time I was 31 I was going through a total abdominal hysterectomy. I had severe endometriosis and cysts. (Came home from the hospital with a fever.)
My pain continued to get worse. Daily headaches joined the club. Something just wasn't right and my husband insisted that I find out. My rheumatologist explained to me that I was not a typical fibro patient and with my increasing headaches, neck pain, and light sensitivity I seek help from a neurologist.
Now we're a bit freaked. He originally rules it as aura migraines but wants to take a look by doing an MRI and with my increasing muscle pain (always felt like I had the flu) he even suggested a myalgia test and a possible muscle biopsy.
No brain tumor. Whew. He said I had markings on my brain.
The night before I was to see him for a scheduled appointment, I was going through my email and I had come across a newsletter that I was still receiving about the Fibro. It mentioned that they are finding a link between Lyme disease and Fibro. Okay, I'll bite, what's Lyme disease? I had heard of it before, but never really thought about. People around here don't get it. Doctors don't seem too concerned about it. I probably didn't have it.
It's contracted through a tick. I had a flashback. I had a tick make me it's home!
I kept on reading. onto the symptoms.
*flu like symptoms that wax and wane
*increased pain during stress
*reddening of the palms or sous of feet
*tingling sensation
*fibrocystic breast disease
*painful skin-sensitive to the touch
*persistent fatigue
*insomnia (difficulty staying asleep)
*being awakened by severe pain at night
*palpitations-chest pain
*air hunger-can't quite catch your breath at times
*reflux-heartburn
*stomach pain
*swollen lymph nodes
*decreased energy
*inflammation
*body temperature below 98.6 oF
*night sweats
*chills
*over-heating in the body
*arthritis
*creaking and popping joints
*joint pain
*bone pain (mainly in the shin)
*muscle pain and weakness
*mini blackouts
*tremors, shaking, jerking, twitching
*vertigo
*brain fog, difficulty processing, multi-tasking, etc
*slurring (fat tongue)
*disorientation
*endometriosis, severe pelvic pain
*reproduction problems
*headaches
*neck pain
*ringing ears
*light sensitivity and sharp pain behind eyes
and this isn't all. This is just some of what I experience, there is more.
(Lyme mimics diseases such as, Alzheimer's, ALS, Anxiety, Arthritis, Bells Palsy, Chronic Fatigue Syndrome, Chron's, Fibromyalgia, Heart Disorders, Hypoglycemia, IBS, Lupus, MS, Parkinson's, Stroke, TMJ, and so much more. Imagine having a little bit of just the above in your body.)
So, I ask the neuro for a Lyme Titer. "Sure." he says "But you don't have Lyme"
Two weeks later, "You must be on to something because your test came back positive." This was just the beginning of a very long and painful process. A process full of joy that we finally had an answer, to frustration in the difficulty to get a proper diagnosis. The difficulties in finding a doctor that treats Lyme and the money spent in doing so. The hurt in knowing you will never be 100% again, but the realization that life is precious.
The questions that family and friends ask because they don't understand. The fact that you have to remember they don't understand when you are down and feeling alone.
Tomorrow I will pick up from where I leave off, but for today, I need to go. I'm having a decent day and I like to take advantage of days like this because I never know when I will be stuck in my bed.
We have 5 kids between the two of us and they have us running ragged already even before school has started.
I know it's a tired and over used saying for 2012, but it wasn't till the 2012 Olympics, did I understand that it was just a fad, but it represented a time, an era in history. A time of war. World War II. It means something to be because in my body I now fight a war and I must remember to do just what the poster says.
It has become my private mantra since then.
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