Where to start... well, I guess the beginning is always a good place. But first let me say that I am not the type of person who sits around feeling sorry for myself. I am not listing my health conditions and giving these details so that people will feel sorry for me. On the contrary. I have dealt with health problems all my life and I am sick and tired of being sick and tired. Cliche, I know, but it's true. I am telling about my health history because I know that there are others out there like me... Lots of conditions, diseases, aches, pains and along with them - frustration. People think you sound like a hypochondriac, doctors tell you there is nothing wrong with you or won't listen to your concerns... or worse - you are on a different medication for every ailment, symptom and side effect. I've been there - I'm still there! But I don't want to be here forever. I plan to use the resources (and the brain) that God has given me and do my own research. I am taking my health into my own hands.
Here's my story, from the beginning (with a lot of information from my mom, since I don't remember the early stuff). When I was a baby my mom told me that I was always fussy, always colicky, always acted like I had tummy pain - and a total intolerance for every type of milk formula out there. I don't know if this indicted a milk allergy, lactose intolerance or even intestinal distress. Once I was put on soy formula I did better.
There seemed to be a short period of time where I was a normal little girl (maybe a year or two). Then when I was three my mom started to notice indentations on my head. She took me to doctors who could not tell her what was wrong with me. Over time, my hair started thinning on top - in the middle of my head and the dent was growing deeper. Finally at age five I was diagnosed with Morphea. Scleroderma. Linear scleroderma. En coup de sabre. In short (I'll give more detail in a later post), an autoimmune disease in which the body attacks itself. I have a huge suspicion that this was caused by immunizations. Anyway, when I was five or six I was placed on a drug (by doctors at Mayo Clinic in Minnesota) called Dilantin. Some of you may recognize this as a neurological drug used to treat epilepsy (and I believe for other mental health issues such as depression and bi-polar disorder). But in this case, it was used as an experimental drug for scleroderma. I was on this medication for about 4 years. It was supposed to slow down or stop the spread of this disease, but scleroderma stops on it's own, after it's done enough damage. By that time there was much damage to speak of (I'll give details in a later post). I believe that this drug may have caused liver damage - a common side effect of most epilepsy medications. The doctors never did tell my mom that this drug also causes malabsorption of vitamins and minerals. I believe I have been deficient in vitamins minerals for most of my life, but Dilantin specifically causes problems with Biotin - AKA - Vitamin B7. I continued to see specialists, but all they would do was measure the lesion area and eventually told me (around age 10 or 11) that I was in remission. I wouldn't get better - it had just stopped progressing.
Around age 12 or so I started to gain weight. It didn't make sense since my mom was always very cautious about what she packed in lunches and never bought junk food. We were always very healthy eaters. I have found, in recent weeks, that biotin deficiency can cause problems with metabolization of fats and carbohydrates. Could this account for my weight gain?
At age 13.9999 (I say this because it was one day before my 14th birthday - Happy birthday to me...), I had my first seizure. I was in a dentist chair. It was a tonic clonic seizure (otherwise known as grand mal) complete with lack of consciousness and convulsing. Why? We don't know. Apparently, neither did the doctors. Could it have been a reaction from the mercury in the office (I personally did not have any mercury fillings)? Could it have been some other random health issue? Liver toxicity can cause epilepsy. Maybe it was my liver damage from Dilantin coming back to haunt me. Maybe I have celiac disease. Maybe I have Lyme disease. Maybe I just have a magnesium deficiency. Yes, all of those health issues listed above have been known to cause epilepsy. And all of them are reversible. Maybe the big dent in my head finally caused too much pressure on my brain.
On Tegretol for 4 years through high school, I did not have one single seizure. I felt like a normal teenager, except for my paranoia about my scar on my forehead and lack of hair, both damage from the scleroderma. I hid it pretty well, but I was always afraid that one big gust of wind or one bad rainy day would blow my cover. The Tegretol did cause a lack of energy and sleepyness - I fell asleep in one too many classes - fortunately I was a good student and it didn't hurt me in the long run. I continued to gain weight all through high school, starting at 135 my freshman year and ending at about 160 in my senior year. I felt like a moose - what I wouldn't give now to be 160 again! I know I ate out occasionally with friends, and probably ate a few too many candy bars after school. But I still didn't think that what I was eating would warrant that much weight gain. Was this also effects of vitamin malabsorption? Was it a side effect of the Tegretol? I was never told that excessive weight gain could be a side effect - now I know that it certainly does have an effect.
In my senior year I was taken off of Tegretol since I hadn't had a seizure in years. Maybe I was cured! No such luck. Eighteen months, a 2 month trip to Australia, and a driver's license later, I started having seizures again. The first was behind the wheel. An amazing story of a true miracle (I'll get to that in a later post). After that they could not stop the seizures, no matter what drug concoctions the doctors put me on. Sure, there were no more grand mals, but I was having partial seizures left and right. I was afraid that my fiance would not want to marry "seizure girl", but I should have had more faith in him.
Joe and I were married in April 1999 and went on our honeymoon. Probably from lack of sleep and maybe a few missed doses of meds, I had a grand mal seizure on our honeymoon. Very disappointing. The details of the next couple of years are a bit sketchy, at best. Tegretol does that to ya - side effect: short term memory loss. I don't remember if I had seizures after I got pregnant with our son, Seth. He was born in April 2000. I do know that I had 2 grand mal seizures during labor, more than likely reactions to the pain medication - nubain. It was a rough delivery (he was a BIG baby). He was a bit bumped and bruised and needed some monitoring, but otherwise, perfect. I was never fully aware of what the birth defects could have been. I now know that moms on Tegretol have a much higher incidence of having babies with cleft lip, cleft palate and spina bifida (hole in the spine).
When I was pregnant with my daughter in 2002 I was advised to stay on meds. Why? People hold their breath (technically, your throat muscles close up and you CAN'T breathe) when they convulse and that means that the baby is not getting oxygen either. This can cause brain damage to baby. Unfortunately, I still had quite a few grand mals in pregnancy, but only in my sleep. I believe it was from crazy surging hormones. During month 4 I started having excruiciating pains under the right side of my ribcage. It turned out to be gallstones (AKA gallbladder disease) and the specialist wanted to take out my gallbladder, but I refused. I told him that I was kind of "attached to" my gallbladder, LOL. That attack lasted a full week. Horrible pain, all the time. I was given morphine, but only took it once because it didn't seem to help much and I wasn't sure of what it could do to my baby. After that week, it took me another full week to recover - my whole body was so weak that I could only stand for 5 minutes at a time for the first few days. The attacks continued through the pregnancy, but not as bad as that first one. Labor and delivery all went beautifully and my daughter, Skyler, was born perfect also, with no birth defects. I feel very blessed.
Since the time I had gotten my menstual cycle in 8th grade, I had NEVER had a regular cycle like most girls and women. Most can count 28-32 days and know what day to expect it. Not me. Not ever. I also had blood sugar issues, weight gain, difficulty getting pregnant and eventually, my cycles stopped coming altogether after Skyler was born. There were many other symptoms combined with the ones I just mentioned that lead me to believe that I have PCOS (Polycystic Ovarian Syndrome). I was told by a neurologist that seizures can cause different organs in the body to malfunction and that 30-40% of women with epilepsy have PCOS. No cycles, no ovulation, no pregnancy. Oh boy, one more thing to deal with. I saw a specialist and was told that I could go on a drug called glucophage, AKA metformin. But since I was already starting to lean towards natural eating and natural healing, I turned this medication down. I was told, however, that my chances for uterine, endometrial and ovarian cancer are all high if I don't start having at least 8 cycles a year. I had 2 in 2007. This is scary for me. And yet I have heard promising things from women who just lost weight and their bodies started to correct everything automatically.
Diseases and conditions that I didn't mention? Hypoglycemia (low blood sugar since I was young - has been linked to epilepsy), Factor V Leiden Deficiency (condition in which my blood is too think - prone to clotting), parasite (from eating contaminated meat at a McDonalds), hypothyroidism (sluggish thyroid, therefore difficulty losing weight), Insulin Resistance (another blood sugar issue - a symptom of PCOS), seborrheic dermatitis (scaly scalp like psoriasis - can be caused by a biotin deficiency), allergies to milk, cat, dust, goldenrod and who knows what else (all except for milk were developed in the last few years), sleep apnea (attributed to excess weight), plantar fascitis (bad heel pain associated with obesity), poor circulation. Others that I suspect I have? Liver damage, magnesium deficiency (as well as many other vitamins and minerals), candida (yeast overgrowth - been linked to yeast infections, ear infections, and even excess weight), adult ADD (I believe I had ADD as a child too), and celiac disease (gluten intolerance).
Most recently? In April of 2007, after almost 5 years of not one single seizure, I had another grand mal seizure - totally out of the blue. No known cause. Not certain of any triggers. I called my neurologist, certain that she would want to see me and do some tests. No. I was brushed off. Told by the receptionist to "up" my dosage. That was it... Needless to say, I was fed up. I started researching like crazy, trying to find answers. All I found were more questions - and I had no one to answer them for me. I went 3 months with no seizures and started driving again (the determined amount of waiting time in the state of Wisconsin). 6 months TO THE DAY from my seizure in April, I had another seizure and this crazy cycle began all over again. I had another seizure 2 weeks later. And then another 2 months later... and my last one - 2 weeks ago today. The last seizure was different. It was a partial seizure with no loss of consciousness, still scary and frustrating, nonetheless. During my last grand mal, I was home with my daughter, now 5. We were watching a movie and I felt the seizure aura (a smaller seizure that is a warning) start. I called for her to follow me and we ran up the stairs. I got the phone and called my husband's cell. Skye said I dropped the phone while I was handing it to her and I fell on the bed and started to shake. When I woke up she walked into my bedroom, shaking and freezing cold, with eyes rimmed red from crying. She told me that she had walked five doors down the street (in socked feet, with no jacket) to get help from a neighbor. She started to cry again as she told me that our neighbor wasn't home. She sat on my lap and cried for a good ten minutes. My daughter is tough - she hardly ever cries and she doesn't let things get to her. But this got to her... and it killed me inside. And that is where this journey truly begins.
Children should be children. They should worry about children "stuff". Like what color crayon to use for the flowers or reading children's books or making their bed. They should not have to worry about whether mommy will have a seizure, mommy will get skinny and healthy or even if mommy will die. To be perfectly honest, I want to stop worrying about those things too. But I can't stop thinking about them until I am doing all I can to fix it. I need to get healthy for me, for my husband, for my children. Because this is the body God gave me and intended me to have. He also gave me a brain. A brain that loves to do research and figure things out and find remedies. I know there are a lot of skeptics out there who believe that doctors are the ones who know best. But after 29 years of being under many, many, many doctors and specialists care, I can finally say, I DON'T REALLY THINK THEY KNOW WHAT'S BEST FOR ME.
But I intend to find out. Join me on this journey as I take this broken down, diseased body, and make it something full of life and energy. I can't wait.
