Let me start by saying I'm a 49 year old married, white female. I include my race and sex in that because as many know, some diseases are more prominent in males or in people of other races. I don't drink; I have never drank. And I don't smoke. Now, I did smoke "flip top" Marlboro's for about 6 months when I was 16 and thought it was ultra cool, but learned very quickly how uncool it really was. I was raised in a home where both my parents smoked and subjected to daily doses of second hand smoke and to this day my mother can go through 2 packs without thinking about it. I only use prescription medication but will again confess to smoking pot for a period of about 6 months, again as a young teenager and again thinking I was so cool. That's the only illegal drug I ever did.
I had a rather unremarkable beginning. I was born full term in February 1963 and though I couldn't tell you what I weighed, I never remember hearing anything about me being either a large or small baby so I think it's safe to assume I was of average weight. I had no serious illnesses as a child other than a constant battle with my tonsils. Those ended up being removed on Halloween, yes my friend on Halloween, in 1970. Now I have always asked my parents "What in the world would allow you to have your child's tonsils removed on Halloween?" I truly find it hard to believe it couldn't have waited another couple weeks! Stomach aches; stubbed toes and runny noses followed me around from time to time but overall I experienced good health as a child.
And while this isn't really considered "health" related, I thing it does bear mentioning. On February 21, 1981 I was hit by a train while driving to work. Yes, I did say hit by a train. No need to go into all the details but needless to say it was a pretty horrific crash that I was blessed to walk away from. This was before the time of seat belts and I will say that it did knock me into the passengers seat. But yes, I walked away. They did make me go to the ER to be checked out and have xrays done but all was well and I was sent home. Life continued quietly on.
In January 1984 I got married and my husband and I knew we wanted to start a family right away so I never went on birth control. In June our dream came true; then in August it turned into a nightmare. A miscarriage. Though my body refused to complete the miscarriage itself and I was forced to have a D & C our plans for starting our family were put on hold.
It took 3 years before I would become pregnant again. As those who have suffered a miscarriage, you know you enter the next pregnancy with much more caution. Finally as the 2nd trimester began we felt safe in sharing our good news: We were due with our first child on September 21, 1987. But my body had other plans and in June I became toxic. Then pre-eclampsia set in. I was immediately put in the hospital where I was set to remain until September. My blood pressure was frighteningly high and hard to keep under control. Finally in the wee hours of Saturday July 25, my water broke and almost 14 hours later, 4 lb 6 oz Samantha Jo was delivered via c-section. Strong, healthy and a little small; but no health problems to speak of.
|.our beautiful daughter, her husband Aaron and their dog, Luke.|
Life went on. Since we knew we wanted a larger family and because it had taken us 3 years to get pregnant with her, we made the decision not to go on birth control after Samantha's birth. In August 1988, we discovered we were pregnant again. As with my second pregnancy all appeared to be going smooth. We were due to deliver our second child on May 19, 1989. Once again my body had a mind of it's own and on March 26 I went into premature labor. After 3 days in the hospital and being dilated to a 3, they were finally able to stop my labor and let me go home on bed rest. 2 weeks later the contractions started again. We met the dr at the hospital and I was in full blown toxemia with pre-eclampsia again. Serious distress this time. No waiting around to see what was going to happen. This child was coming out and he was coming out now. On the afternoon of April 11 in an emergency c-section, 6 lb 3 oz Kevin Scott made his way into the world. A strong, healthy, somewhat early baby boy.
|.our handsome son with his dog, Rebel.|
Life moved along smoothly and what most Americans would consider normal. We were neither rich nor poor. Middle middle class I guess. My husband and I both worked and my mother took care of the children until they were 2 and they entered daycare. By this time we had moved from Florida and were living in our current home in the mountains of Western, North Carolina. We were happy; healthy and life was good. As a side note I will add that on March 11, 1995 our daughter was diagnosed with insulin dependent diabetes. It was tough for several years; times when I never thought we'd get her blood sugars under control but now, at 25, I'm pleased to say she's very much in control of her health and suffers no complications from that horrible, horrible disease!
In February of 2000, I had the opportunity for a 3 week mission trip to India with several of our church members. I'm not a traveler and absolutely hate to fly; but if you're a Christian and ever felt like the Lord has truly laid something on your heart, you know when He says do something, you do it. So I went. Nothing remarkable (health wise) happened and I returned having fallen in love with the beautiful people of that deprived country.
And along life's road we continue. Finally mid-December 2002 hits. And I wake up one morning in pain. All over. On a scale of 1-10, a 10 from head to toe. Just assumed it was one of those things. Though I was hurting I went in to work because it was the day of our Christmas party; Friday; pay day and we only had to work half a day. Over the course of the next few days, the pain passed and I seemed ok. In mid-January it hit again. I went to my dr; had the standard blood tests done; xrays were completed and everything seemed fine. "Must be getting old" he joked! HAHAHA. He gave me some pain meds and some muscle relaxers and suggested I see a chiropractor. I did; found some relief and silly me, thought life would again, just move on.
By February I was suffering great pain in the top of my right foot. I returned to the dr who did blood work and an xray. This seemed to be becoming my standard on the menu at his office! The xray showed nothing but he felt it may be a stress fracture "Those don't always show" so wear a tight sneaker and it should be ok in a week or two.
In a week or two I couldn't put a shoe on it. The pain was off the charts; the foot was completely swollen and it now had the sensation of razor blades being sliced on it. Back to the dr and another standard menu order. This one came with a referral to an Orthopaedic dr. Bet you can't guess what the ortho suggested? If you guessed blood work and an xray you win the prize!! Seriously?? How many times do these have to be done? He saw no stress fracture; the blood work was unremarkable and so he put me in a boot. That should take care of it. Check back in 2 weeks. I was back in a week. The symptoms were now presenting themselves in my left foot. Now mind you this is all from the ankle down. Redness, pain, swelling and the feeling of razor blades slicing across the foot. At this point, with symptoms in both feet, I could no longer walk and was in a wheelchair. I couldn't take the 10 steps from our bed to our bathroom and had to get a bedside commode. I could no longer take a shower; cook dinner; or spend time with my family. During the course of these few weeks I was given steroids; more blood work was done; nuclear bone scans; MRI's; high doses of pain medications and anti-inflammatorys. All my ANA markers came back clean but my SED rate was off the charts. I tested negative for everything. Something was very wrong; but no one seemed to know what. I saw a Rheumatologist; Endocrinologist; Gastrointerologist and I'm not sure what THEY were, but a room full of specialists at Duke University. No one could come up with anything.
Then about 2 months in, it began to radiate up my legs. I woke up one morning and all the symptoms were in my right leg almost to my knee. I couldn't even get myself out of the bed into the wheelchair. I called my husband at work, who called an ambulance and to the ER we went. At this point if you don't know what he did, I'd have to guess you haven't really been reading the blog, but yep, blood work and xrays. He did however decided (for whatever reason) that he wanted to do a CT scan as well.
Well looks like we finally found something. And it also looks like we didn't find some things that we should have. First, what they did find. A 6 inch abdominal mass. I'll save you the suspense and tell you here and now that it was nothing more than a mass and it was benign. But how about what we didn't find. Now, remember back to the story about getting my ONE tube tied and the story about only finding ONE kidney. Now this dr discovers lots more ONE's. Only one fallopian tube; only one ovary; half of a bladder and half of a uterus. Say what??? He was stunned to hear that we had 2 children but not at all surprised to hear that I had been toxic and both had been premature. How in the world was this not discovered before? Who cares. FIX MY FEET!!! After 2 weeks of passing the buck back and forth about who should go after this mass in my abdomen (at this time not knowing what it was) it finally fell to my ob/gyn who also had a urologist and gastrointeroligist on standby in the OR as she didn't know what she would find when she opened me up. Other than one of everything and a 6 inch mass, nothing remarkable. The mass was removed and because of scar tissue and some attachment to the one ovary I had, a complete hysterectomy was completed as well. After 6 days in the hospital I was cleared to go home.
And as a shock to all of us, I was able to cautiously WALK out of the hospital under my own power. Had the mass had something to do with what was wrong with my feet? Was it pressing on a nerve? We don't know. What we do know is within days after my surgery my feet began to look better; I could walk and I seemed to be on the road to healing.
What we didn't know at the time though was that my feet would never be the same. While the immediate symptoms were gone, I was left with an underlying pain that would come more than it would go. A deep, achy pain. Like I had walked for hours. The pain would radiate up my legs, into my knees, hips and lower back. It soon became clear that my legs would never be the same again. More tests; more xrays; more blood work. And no answers.
I now live on Vicodin 4 times a day and Clonazepam 2 times a day. I live with a heating pad as my best friend and most nights am in a hot bath sometime between 2 - 4 am. Some days are good. Most are not. On a scale of 1 - 10 the average day is about a 4. It's always there; in the background letting me know it's never going away. Usually 3 - 5 days out off the month, I'm at a 10. I'm in bed and immobile. I can't do much of anything other than watch reruns of "The Big Bang Theory". I've tried every kind of shoe you can imagine and have discovered I can wear a pair of $129 sneakers or a pair $4.99 flip flops. No in between. The bottom line is pain every single day of my lfie in my lower back; hips; legs and feet for a reason that can't be diagnosed.
One would think that's the end of it. But no. It was a Friday afternoon in March 2004. I noticed I began having some pain in my right eye. Though I hadn't had it in years, it felt like pink eye. I went into the restroom at work and sure enough it looked red. I got back to my office and called the eye dr. Since it was late in the day and it was Friday, they advised me of something I could get over the counter and if I wasn't feeling better by Monday, to call and they would work me in.
By Sunday night I felt like I was blind. The pain had moved over into my left eye as well. That horrible razor blade feeling was back in both eyes and I couldn't stand any light. In doors I had to wear sunglasses. I kept cold wash clothes on my eyes and took extra pain medicine. Now, I will say I didn't go to the ER. I'm not really sure why. Looking back the only guess I can offer is that I had been through so many trips to the ER to hear "I don't know" I decided I would wait unitl Monday and see the eye dr.
And so the visits began. For the next 6 months. WIthin 2 weeks he had my major symptoms under control but as was the case with my feet and legs, my eyes would never be the same. Several rounds of blood work and another visit to Duke left me with no clear diagnosis. I had always had 20/20 vision but now I was forced to wear glasses. I often can't see good with them on; I can't see a thing with them off.
Though I earn one sick day a month at work and a day and a quarter annual leave, I have no leave built up. I'm covered under FMLA and have a very sympathetic supervisor who works with me as much as she can.
So why start this blog now? It's been 10 years of suffering; 10 years of deciding this is the hand you've been dealt, deal with it. Why now?
Thanks for asking; I'll be glad to tell you! I've seen too many stories in the paper of celebrities dying from accidental drug overdoses. Even if it is prescription pain medication. Now I know it's different with celebrities and I will honestly tell you (on my dear wonderful deceased fathers grave) that I am very, very cautious with my pain medication, but I'm sick of it. I'm so tired of taking pain medication every day. I know that it's affected my memory. It keeps me tired. I know it can't be good for my body. SO.....it's time to try again.
10 years have come and gone. 10 years where modern medicine has made some great advancements. 10 years where maybe this time they can find out exactly what this invisible illness is inside of me that's trying to steal my life away.
One thing I am somewhat proud to say is that in all the drs I've seen; all the tests I've had done; not one dr has ever made me feel like I was crazy or that this was all in my head. They have all agreed that there is something wrong somewhere in my body but no one seems to be able to find it. NOW, that's not to say there's not many a day where I don't feel like I'm crazy; where I don't feel like it's all in my head. These are people with several PhD's after their names. Surely they should be able to figure me out.
I don't know. Time will tell. While I know I can physically take all their tests again, I'm not convinced I'm emotionally strong enough to hear all the "I don't knows" again. Those are hard. I've heard the words Lupus, MS, Sarcoidosis, Lyme Disease, RA and Muscular Dystrophy. But none of those are easily diagnosed.
So.....my ever faithful, ever strong husband and I begin again. One day at a time; one step at a time; one test at a time to see if we can finally find out what this invisible illness is that seems to be eating away at my body and see if we can finally put a name to it. I have to say that's truly one of the hardest parts. Having people ask "What's wrong?" And not being able to answer them. As you can tell by the length of this blog (and I believe we all have a story this long) it's not something you can just say "Well, this is what happened." It's too detailed and often too hard to believe. So we try again to get a name for whatever it is that seems hell bent on destroying my body.
Surely with that, there will be some peace.