So Young Yet So SickLisa
I’m only 29 and soon I’ll be 30. It’s been along road for me and now that I actually think about it, I guess it all began when I was 16. Back then…..
When I was kid, it didn’t matter what happened to me, I never got hurt severely or broke a bone. The only thing I remember is having stomach pains until I was about ten and I got the chicken pox when I was 9. That was it.
That changed though when I was 16. I came down with Mono. I remember how horribly sick I was for three weeks. I thought I was going to die. My mother has told me that she could here me calling out to God during that time begging for help and pleading for relief. Funny though I don’t remember that but that’s probably due to the horrible high fever I had been running. It was also about this time that she had taken me to an Orthopedist to check me for Scoliosis. He considered it to be mild. During that summer I came down with laryngitis, pharyngitis, tonsillitis, and bronchitis. I remember being horrible sick again and it knocked me down for a few weeks. But I bounced back and seemed to feel well until I was 18. I joined the Navy and off I went for four years although I had to get a waiver due to my Scoliosis which at that time had a 15 degree curve thoracic and 19 degree curve lumbar. In boot camp, I had twisted my ankle during our two mile hikes. They put me on crutches, did some physical therapy, and I seemed no worse for the wear and graduated.
The following year, I kept getting all these sinus infections. The doctor ran some blood work and noticed that the mono infection was still active in my blood. They diagnosed me with rhinitis and sinusitis. When I was 21 I started getting these horrible muscle spasms on the right side of my back in between the thoracic spine and shoulder blade. I remember just doing the dishes would set it off and I’d go into branch medical or the emergency room and get a shot of torridol and be knocked out for a couple of days. The first two years I was in the Navy, I was a plane captain. I did a lot of standing, walking, driving, pushing and pulling heavy equipment, and tying down aircraft using heavy chains. They put me on limited duty and took me off the flight line and stuck me at a desk job which I thoroughly enjoyed. At that time they diagnosed me with myofascial pain syndrome, chronic mechanical lower back pain, and scoliosis. I went to physical therapy, had ultrasound treatments, had adjustments by a chiropractor, got neuromuscular massages, and even wore a tens unit for awhile. I was on pain killers and muscle relaxers. I got pregnant not to long after that and it seemed to get better. Although the Navy went ahead and gave me a medical discharge and it was fair winds and following seas for me. I got worse after my son was born. I started having pain in my back, my neck, and my left wrist. I couldn’t sleep and felt tired all the time. My weight and appetite fluctuated. I got depressed too. They diagnosed me with Fibromyalgia and Carpal Tunnel Syndrome. It was even discovered I had some nerve damage done to my arm. I continued with the medications, the holists, the chiropractor and massages, and even did acupuncture. When my son was about a year old, it seemed I had pulled out of it and started back to work as a civilian.
I did fine. In 1999 though I came down with bronchitis, pharyngitis, laryngitis, and tonsillitis again. But I pulled out of it and every thing seemed hunky dory. I was working, I was active, I was traveling, and I was being a mother to my son. I was 25 and life seemed great. Then I woke up one Saturday morning and my life would never be the same. I woke up that morning and felt like I had pulled a muscle in my back. I had been at a business party the night before and did a lot of dancing aboard a yacht that was cruising up and down the St. John’s River. So I figured I probably had a hangover and just did way to much dancing. I remember going to the mall that day and doing a lot of walking with my fianc’e at the time. The pain seemed to get worse. By the evening, I was running a high fever, shaking uncontrollably, and I felt like the left side of my back was going to explode. My fianc’e threw me in the car and took me to the emergency room. They diagnosed me with Pylonephritis, stuck me on an antibiotic and some Vicodin and sent me home. By Tuesday, I was worse. I went to see my doctor and he karate chopped the left flank side of my back. I jumped off the table and howled. They admitted me and it turned out I had a huge stag horn kidney stone stuck in the cortex part of my kidney and causing the horrible kidney infection. I was there for four days but it didn’t pass. They sent me home and gave me poly citra K to drink. A month later, it was getting worse. In April of 2000 they hospitalized me again and this time they did a percutaneous lithotripsy. I hope I never have to go through that again. I thought I was going to die. For those of you that don’t know what that is, they basically punch a large hole into your back and burrow their way down into the kidney. Then they punch another hole into your kidney until they reach the stone. They apply direct energy to the stone, shatter it, and then remove it. In the meantime, they place a lovely nephrostomy tube in your kidney which is hanging out of your back. So basically, I had a gaping hole in my kidney and my back for four days with a huge tube coming out attached to a bag to drain the blood and urine. Sounds nice doesn’t it? I was so sick. I was throwing up and the pain was horrible. They had me hooked up to a PC pump, the kind where you could hit a button every five minutes to give yourself a dose of pain medication. I was on dialaudid. I don’t think it helped that much. I lost about thirty pounds and I was knocked down for a couple of months. I hope I never have to go through that torment again.
Everything seemed alright. That Fall though my pap smear came back as abnormal. They did some further testing and it turned out I had the very beginning stages of cervical cancer. The froze a part of my cervix and cut it off. They caught it early and told me everything would be alright.
By then I remember just not feeling good. It seemed I was swollen, having horrible back spasms, I was fatigued, I was having constant colds, my body seemed to ache all over, and my blood felt like it was on fire. My mother (who has RA) started to talk to me about getting diagnosed and starting AP. I went and saw a doctor in Lakeland who supposedly did AP. In fact, my mother had been getting her IV’s with this doctor. However, he only put me on a ‘diet’ and didn’t put me on the antibiotics. He did run some tests however. Well, my ANA was positive and he said I had antibodies to Scleroderma. Sclerowhata? I remember saying. I went back to Jacksonville feeling really low and my mother said not to worry, we’d figure it out and she sent me the New Arthritis Breakthrough book and tons of information. I gave it to my doctor’s at the Mayo Clinic in Jacksonville but they didn’t believe I had anything wrong with me. Then I got a nice letter from the clinic saying they would no longer treat me as a patient. Oh, how lovely that was.
In January of 2001, I was driving to work and it was raining. I got into a bad car wreck. The car was totaled and so was my body. I had some broken ribs, a slight concussion, a twisted and bruised up ankle, a swollen and banged up knee, and my hip got banged up pretty bad and had a bad contusion. Not to mention the whiplash and the horrible back pain. I was driving in my lane and some idiot in an SUV came hauling out of a parking lot and slammed into the right side of the car head on. He sent me off the road and I hit a brick wall of church just after I smashed over a tree. I remember waking up and seeing the entire left side of the car concaved in, the roof peeled back, glass was shattered everywhere, I was bleeding, and I remember thinking, ‘man it’s raining inside the car’. My nice doctors put me on bed rest for a couple of weeks and loaded me up on pain killers. I went back to work and kept trudging along like I had always done.
And would you believe six weeks later I got hit, again! This time I was sitting at a red light and some idiot just ran right into the back of me and just aggravated all of my injuries all over again. Well, it was a done deal after that. For the next few months, I just survived. I remember being in so much pain and I was just going down down down. My body ached and burned, my joints were stiff, achy, and swollen. I started to get this butterfly rash on my face. I started to get this red stripe around my neck and the skin began to harden. I remember my voice began changing and it felt like my throat and chest always felt like it was closing up. I was losing clumps of hair. I couldn’t sleep. I was fatigued all the time. Gravity hurt my body. I was having these weird white clumps coming out of my tonsils in my throat. My lymph nodes in my neck, armpits, and groin were swollen and hard. I was having horrible muscle spasms and muscle pain. I remember having chest pains. I remember it being difficult to drive my car. I remember it being difficult to walk. I remember feeling like I could never catch my breath or feel like I could take in a deep breath with out feeling like a boa constrictor was wrapping around my chest. The list goes on and on, but that pretty much covers it.
In the meantime, the doctor’s kept telling me there was nothing wrong with me, although my ANA was high and I started testing positive for different bacteria strains in my urine and blood. They were Strep Agalactiae Group B, Coccibacilli, Ancinobacter antitrutus, and Nanobacteria. I called my mother in August of 2001 and told her I felt like I was dying and I was so sick. She gave me doc’s number in Iowa and I called to make an appointment. My appointment date was set for November 11, 2001. That was three months away.
In the meantime, the doctor’s told me I could no longer work so they put me on an indefinite period of leave and bed rest. Luckily, I had disability insurance but it was nothing compared to what I had been earning. So I packed up and went home to mom and dad and waited to go see Dr. S.
Oh, what a miracle that man is. He tested me for everything and turns out I tested positive for 3 strains of mycoplasmas. Homins, Pneumonaie, and Fermentans. So he gave me some prescriptions and sent me home. He agreed I had symptoms of scleroderma, fibromyalgia, lupus, raynauds syndrome, and the scoliosis. So he chalked everything into mixed connective tissue disease.
I went home and hooked up with Dr. A in south Florida, Barb’s doc. I was getting better but then I got worse. My vision went blurry and the symptoms got way way worse. I was taken off the Minocin. I was put on the tetracycline, doryx, and cleocin, but via iv. I started the iv’s in the winter of 2001. Dr A suspected I had the hypercoag problem due to the miscarriage I had suffered back in Aug of 2000. So he did the hemex test and sure enough, I hit the lottery. So I started the hepparin shots and within a week, I did a complete 180. Within six months I was in complete remission.
October of 2002, I went to Hawaii and married my husband. I would fly back and forth from Hawaii to Florida to visit my 5 y/o son. I also became pregnant, a lovely wedding present. I found out on a Sunday and called Dr. A Monday morning freaking out and scared to death. I didn’t want to lose this baby like I did the last one. Well of course I had to stop all medications but I continued on the Hepparin.
Everything was fine until May of 2003. In my 29th week of pregnancy, my husband and I were sitting at a restaurant eating dinner. I went to the bathroom for I felt the urge to urinate. I tried to go but nothing came out. I went back to the table and within 10 minutes, I told him to pack it up and lets go. He said why? I said, ‘Because my kidney is going to explode and I betcha I have another stone. To the emergency room!’ Good thing we were in downtown Honolulu because if we had been home on North Shore, it would of taken about an hour and a half to get to the hospital during rush-hour. People in the United States should not even get road rage. Try driving in Hawaii where there is only one highway and 20,000 people are trying to get home at 5 pm. That’s road rage.
Got to the hospital and up to labor and delivery I go. I told the doctors I already knew what my diagnosis was but they were skeptical. They apologized when they saw the stones I had sitting in my left kidney and saw that my right kidney had shut down and was swollen five times it’s normal size. Meanwhile, the baby was agitated and instead of kicking forward, you guessed it, he was kicking my kidneys and ribs.
So I was hospitalized. And they managed to make the stone pass in the right kidney which they suspected for the blockage and shutting down my right kidney. But the left kidney was a no go.
So it was hard back then. If you were here on the board, you may remember me as bunny or Lisa. They tried to induce me 3 times when I hit 37 weeks, but he wasn’t going to come out. So finally I went into the doctor and said break my water and let’s get the show on the road. So I went into the hospital that night and sure enough by 5:30 am the next morning, we had out baby boy. He weighed 8 pounds 9 oz and was 22 inches long. His head circumference was 14 inches around. It was very difficult getting him out but I managed.
The next few weeks were hard. My left kidney just seemed more aggravated. I was nursing so that was sapping a lot of strength out of me. August of 2003 was a hectic month. My husband had broken his leg and was at his doctor’s getting it put into a walking cast with crutches. At the same, I was at the urologist scheduling surgery to get the stones out. My husbands supervisor called me and told me we were being transferred to Fort Bliss Texas within 10 days.
So that was hectic. Moving from Hawaii to Texas, with a six week old baby and husband with a broken leg. Man that was a lot of fun!
I was stubborn. I didn’t want to stop nursing and therefore did not start back up on AP. However, by October it was time to do something. All of my symptoms came back full force. Worse than before. I immediately started on the IV’s. In November I had to have surgery to remove some sort of tumor/cyst that was in my uterus. One test came back as positive for cancer but the next one came back negative. I’ve been getting checked every three months and so far everything is looking fine.
Although, the doctors told me if I had another baby, it would probably do one of three things: have complete kidney failure resulting in dialysis and needing a transplant, I would miscarry, or I would die. So I made the decision to have my tubes burned. My two beautiful boys are enough for me and God has blessed me with healthy children.
I was hospitalized again in December, again for the kidney. Turns out I had Proliferative Glomurelinephritis. Along with Renal Stone Disease and Hydronephrosis. So they did another lithotripsy and it seemed the stone was cleared.
Again, in May I wound back up in the hospital with another kidney stone. They did another lithotripsy. There were three stones now. Two did shatter and pass, but one is still in there.
However, I’ve been taking my supplements, my prescriptions, my Iv’s every two weeks, doing the Hepparin injections, and watching what I eat. I’ve been getting better. I do have my bad days and ruts still, but I’m a lot better where I was just a few months ago.
I have to keep telling myself I put my body under enormous stress due to having the baby when I went into remission. So I keep telling myself it’s going to take a little longer this time, but I will get through it, like I did the last time.
So never give up hope. AP is a life saver but we are all different and it takes time to tweak the treatment to our particular needs. I wish you all health and peace.