My story began when I was 12. I recall vividly having these severe headaches. Since my mother and grandmother had a history of migraines, we assumed I had the same. As I got older and into adulthood the headaches continued. I'd have all the symptoms associated with chronic migraines and knew I would just have to manage it and live with the pain as so many women do. We press on.
I climbed the corporate ladder to a V.P. position in my field by the time I was 40. Also during this time the headaches became more severe to a point where they were affecting my ability to work as well as my overall quality of life. A lumbar puncture was done and I was diagnosed with Pseudotumor Cerebri, now called Intracranial Hypertension (IH). In what seemed like overnight, my entire life changed. I went from being a Vice President with 17 years with the company and a promising future to just hoping to live long enough to see my only child graduate high school for I felt as if I were dying.
I was in a constant state of feeling like my head was about to explode, nausea, memory loss, the list went on and on. Short-term disability turned into long-term and, ultimately, I was deemed disabled. Imagine the life you lived and the life you were working hard for suddenly being stripped from you and you are living day by day not being able to plan because you would have to see how you felt on that day. IH being an invisible disease it's difficult for people to believe that you are disabled because you don't "look" sick.
Fast forward four years later. I'm blessed to see my daughter graduate high school with honors and go off to college. Her future looks bright. That's really all I asked for: to not die before she reached adulthood. I feel I am on borrowed time now. I live my life in a controlled bubble in order to try to manage my disease. I receive injections every three months for aside from caffeine, none of the other medications helped. My home must be kept cool, dark, and with minimal noise. I am restricted to being indoors most of the Texas hot summer, for temperatures affect my condition drastically as does the barometric pressure.
I was very proud of the fact that I didn't consume caffeine my entire life. Now, it's the only thing that will take the edge off of a headache. Caffeine, for me, was the equivalent of a cancer patient who never did drugs being forced to smoke marijuana for medicinal purposes. Yes, I was that prude. I think no one understands what living with a debilitating disease is like, but there are things that have worked for me that I feel have contributed to the stabilizing my condition as much as can be expected. They are a mind, body and spiritual approach to health and healing. They have been quite effective. I have lost over 70lbs through diet and frequent exercise -- meaning 5 days a week for an hour or two, if possible. I have found that too much exercising raised my brain pressure (I can feel it) and temperature so I carry ice packs and drink lots of water when doing physical fitness usually at my own pace, which is crucial, for low impact is just as effective and it has worked for me.
Another important factor in living with IH is that we must continue to "live" and not let the disease take over our lives. Do not yield to it, instead learn to live with it. I'm not well today as I write this bio, but I am optimistic that I will feel better tomorrow or next week. Maintaining a positive outlook on life whatever cards you are dealt. I hope for a cure, but I'm thankful for my life even though I have IH. It's not the end of your world, just a change or newness to how you live it.
By Valerie Smith
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