The following entry is personal. It has nothing to do with fashion, the current events running in SecondLife or that great weekend find. It’s personal, about me and the struggles I face being an individual who suffers from multiple chronic illnesses.
Many of you who read my blog or follow me on other social networks are well aware that I am ill. Some of you are unsure what I have and very politely have asked privately if I would mind sharing what I do have. Others are new to my little corner of the world, and unaware that I am even ill. Part of this entry will clear that up, but the majority of it is for my own purging, a necessary catharsis if you will.
At age 12 I had my first migraine headache. It was Christmas 1985. I remember the falling snow began as my siblings and I put out luminarias in the yard as was our tradition. In January of that year, mon Papa had a massive coronary heart-attack, which he died from. The pain in my head was awful, but what was freightening is that my hand, face and tongue went numb. Along with that, I saw everything with this odd swirling fuzziness as if I had been staring up at the sun for a long while.
Mon Mama took me to our family doctor after the holiday, and that is where I discovered I had had a migraine headache. That was the beginning of my long 27 year journey. Taking the medications out at the time for migraine, which was not that common as it is now, did little to help me. I started having the headaches with multiple symptoms: aura (the fuzzy weird swirling in the sight as if you stared at the sun), nausea and vomiting, shaking in the hands to the point I could not feed myself. I had to be given shots of Demerol to stop the pain, which just knocked me out for a day. We moved to a new stage, seeing a neurologist.
The neurologist ordered multiple tests, blood, MRI, Cat-scan, nerve testing, and a sleep study. The main thing the neurologist was looking for was a brain tumor. Once that was ruled out and other frightening illnesses like M.S. and Parkinson’s Disease, he informed us that I had what they referred to at the time as severe chronic migraine syndrome. When measuring activity and pain of such headaches, the degree of my pain was at a steady level 10, with 10 being the highest, thus labeled severe.
What did it all mean though? That I would get a migraine at least every 2 weeks that would last for many days before breaking. Medications helped sometimes, other times it made it worse.
I learned to live with having migraines. I changed my diet to exclude migraine inducing foods and drinks. No caffeine, chocolate, MSG (monosodium glutamate), aged cheese, nitrates. If you research foods that contain just nitrates alone, the list becomes quite long. I did all of this. I read every single package, carton, label to make sure it did not contain MSG for that was a major trigger for me and most migraine sufferers. When you go to the market or grocery next, take a look at the back of boxes and labels, you will be surprised how many products contain MSG.
Luckily mon Mama is an amazing chef, and we ate most of our meals at home until the weekend or special occasions to which we did go out to eat at a restaurant. Nothing that I ate at home that was cooked by her ever made me sick. When I did go out to eat we started to discover other places that had to be avoided, for they used MSG in their ranch dressing, or certain sauces, even soy sauce.
By my high school years I had adapted to not drinking cokes or eating chocolate which were the main things I removed from my diet. The headaches had not stopped however and by my Junior year I had at least one headache every week and one each month that put me out of commission for up to 8 days. Needless to say I missed a great deal of school.
In January of my Junior year of high school, I was on a retreat with my peers. During a performance by a guest speaker, I had my first and only seizure. The tests with the neurologist started up again, now a worry of epilepsy added to the already disconcerting migraines. Thankfully epilepsy was not the issue, but the pressure caused by the continued migraines the cause of my seizure. This was treated with blood pressure medication, to keep the blood vessels from restricting and causing an issue again.
During my last year of high school, I had at least a migraine a month, but they seemed to be less frequent which I was thankful for. However, Winter of my graduating year I was in a car accident on the way to school. A typical scenario, on a highway, the car in front of me hits black ice, I hit my brakes to not hit the car in front of me. The car in back of me hits me, I hit the ice and flip my cherry red 1965 convertible Mustang. Luckily in Winter the top was not down or I would have lost my head. During the flip, the metal frame of the windshield bashed into my face. Fluids shooting out from the engine all over, my buddy next to me holding his head and knee, I was not staying in the car or leaving my buddy in there to blow up. My panic hit my adrenaline and I squeezed through the drivers side window which had been crushed in halfway. My buddy was pulled out by a man who helped us out. I recall pulling out my drivers license which on the back had a label secured to it with mon Mama’s telephone number. Across the highway I saw a police officer, and in my shock I all I wanted to do is run to him, but I did not make it but a few steps before I collapsed on the highway.
We were taken to the hospital via ambulance, secured for all head trauma and possible broken spine. I recall the paramedics talking, shocked that we were even alive for the car was smashed up good and had rolled completely over. One of the paramedics was certain that my neck had to be broken for what I did not know or see was that my entire left side of my face had been bashed in good by that windshield. I knew I was bleeding, but did not realize it was from my face and forehead, thinking it was from my head where I had pressed my hand as it was hurting greatly. I remember wiggling my toes as much as possible, to disprove the paramedics words. I was more worried for my buddy, who had hit his knee into the dash enough to bust the knee open.
The outcome was a broken leg for my buddy and a facial contusion to the left side of my face. I was extremely lucky that the cheekbone did not break. My brother-in-law is a doctor who worked in the hospital I was taken to. He came immediately to my side and he too thought for certain my cheek had been shattered. Lucky to be alive, lucky to not have broken facial bones, lucky. For months my face looked like I had gone 12 rounds with Mike Tyson. The headaches of course got worse during that time, but then evened out to their normal once every two weeks or so.
I continued on through high school and college with these frequent migraines. They started to lessen when I was 21, often people can grow out of them, but that was not the case here. I had about one a month guaranteed. That was less than in high school which I was thankful for.
In 2000, I steadily got worse, suffering from the migraines every few days. On top of the migraines I started to have other issues of pain in my neck, shoulders, arms and hands. My coordination became unsteady, my sight diminished and I started losing my hair. I went to several specialists at UCLA, and that same year mon Mama was diagnosed with Fibromyalgia, a neurological and muscular disorder which results in the sufferer being in chronic pain among a long list of other issues.
I went to a neurologist again, who diagnosed me with hypermobility syndrome which basically means my joints stretch farther than normal, they often referred to it as being double-jointed. I’d make a great contortionist! Along with the hypermobility, the doctor was “positive without a doubt” that I had Lupus. I can’t explain why I felt adamant that the doctor was incorrect, but my gut would not relent that no way in hell did I have such an awful illness as Lupus. I went to three other specialists who said NO, I did not have Lupus which they tested by sending a skin graph to a lab along with other blood work and tests.
This began the long testing at UCLA to rule out: Lupus, M.S.,Parkinsons Disease, Cancer, Lou Gherig’s disease, the list went on and on and on. But the one that stuck out to us was cancer. Now we were worried I had something even more severe and life threatening. We waited two long weeks for test results to fully come back. It was NOT cancer. Relieved, only to discover that I too like mon Mama and other members of our family have Fibromyalgia. When tested for Fibromyalgia, an individual has to have pain or tenderness in 11 of the 18 trigger points on the body. When I was tested, I had all 18 trigger points ‘live’ as they refer to it.
Chronic migraines and Fibromyalgia. Every year that passed I got worse, my pain hindering me from many things in my life. My attendance at work became very poor. I was unable to continue attending classes on campus. In Winter of 2009 I returned to a new set of specialists at USC Medical. I set up an appointment in October of 2008 to see top neurologist in the country who specializes in chronic headache disorders in January of 2009. It was not easy to get in to see this woman!
At USC I was again tested in the same way I had been so many times before. The doctor put me on new medications that I had not tried before. Every couple of weeks I went in to get Lidocaine shots in my shoulders, neck and scapula region of the back. It was not a pleasant treatment but I was willing to do anything to get relief. The shots helped some, but the pain still never went completely away. More medications were tried. At this point in my life I had taken over 22 different medications for my multiple illnesses. I underwent physical therapy, acupuncture and deep massage.
Three months into my treatment at USC I was put on medical leave from work. For six months I continued my treatment.
During this time, the doctor put me in for a program that she had been a part of the clinical trials for, using Botox injections in the head to treat chronic migraines. My insurance was not too keen on the idea and it took a great deal of paperwork for her and I to get them to pay a percentage of the cost. Each shot was $800.00 USD. The shots were administered to my neck from the curve of my shoulder up to the base of my skull. The shots were also placed at the entire left side of my skull from the back of my ear to the curve just before the temple. Additionally shots were placed all along the forehead and right between my eyebrows. The shots hurt like hell!
I sat in the doctors office after she administered the Botox injections and within ten minutes I looked to mon Mama and through my tears said, “There’s no pain, there’s no pain.” Had we finally found the solution? For nearly five days my pain was gone, but it was short lived as the return hit hard and fast on day five. The injections could only be given every three months. When the 3 month mark came up I received my second treatment of the Botox injections. This time, they did nothing. By round 3, it felt like a waste of money as they too did nothing.
Part of me will always wish that the treatment had never worked at all for it gave me that reprieve, that moment of hope and I grasped hold of it with all of my being. When hope is shattered it is a painful event, and why I wish I’d not known that glimpse of being well, being pain free, being normal.
I now take a medication in the morphine family. My pain is still greater than the morphine based medications. It is very difficult to keep my head up, suffering pain unending as I am. During my journey of illness I have lost lovers, friends and myself. For people get tired of asking you to go out to do something and you have to cancel because you’re sick. They stop asking. They stop calling. They don’t want to hear you ‘whine’ about being sick, about how you’re dreams have been pushed from reach. They want the fun friend who is always making them laugh, who they can rely on, who cares for them. Yet when the tears of the clown fall, the audience turns away from the sight. I do know that true friends, loves and family do not leave you when you are in your darkest hours. I do know that those who dismissed me due to being ill never deserved me in the first place.
The hardest part is losing my independence and my dream of the arts. My hands shake horribly from my illness, so badly that I look like a junkie needing a fix. I am unable to draw, ink, paint due to this. This is why this blog is my creative outlet. Through SecondLife, I truly do have a second life, where I am not sick, where I can go out dancing, I can take photographs and be creative. It is my therapy, my reprieve and distraction where medications and specialists are at a loss, my distraction is all I have.
In all of this darkness that my pain causes, there are two women who bring a great deal of light and love to me. Mon Mama, who stands beside me, holds me up, encourages me and never ever gives up on me. Mon Mama who cries when she thinks I can not see or hear, and asks God to please help her child. Mon Mama who has emptied out her savings in order to get me treatments that insurances don’t cover.
She Said Leave It To Me, Everything Will Be Alright
The other is my love, my partner, my soulmate Gabriella. A woman who no matter how low I get, picks me up, dusts me off and says I love you, all your broken pieces and never ever tries to glue me back together but accepts me in all my pieces. Never does she say to me that I am less due to my pain, nor does she turn away from me or ask me to not speak of my illness. Always she puts her hand out to hold mine, to lift me up and shelter me in her arms and her love. She thinks I am magnificent, even when I think I am worthless, she shows me otherwise. And when I lay huddled on the floor, crying for myself, weeping in pain, torn and tattered like a rag-doll, she puts her arms around me and tells me she loves me, and that I am never alone.
Many of you, who read my blog, who follow me on social networks are a great network of compassion and strength. So many of you reach out to me and may not realize how much of a difference that makes upon my day. To each and every one of you that has reached out a hand like the beautiful women who I love so dearly, thank you, for being a part of my support network, thank you, for you.
My windlight can be downloaded here.