One weird thing about TBD's (tick borne diseases) is how the symptoms wax and wane and change from day to day. That is probably why so many people think we're crazy. One day, I am mentally okay, but my limbs are in so much pain that I am confined to my bed. Other days, I cannot remember the name of my cat, my address or a conversation I had an hour ago. Sometimes my right knee hurts, other times its my left hip; sometimes the large joints, sometimes the small ones right down to my little toe. I have (already fallen asleep twice since starting this blog) periods where all I do is sleep for weeks, and at other times it is the vertigo and vision that is so debilitating. Nobody could ever understand this illness; I don't even think those of us that have it do.
Last week it was fatigue; I slept all but a couple of hours a day. This week it's the large joints again, specifically the hips. What happens though, is every time the symptoms "cycle", they become much more severe. The hip pain in the past has been bad, usually switching from side to side, depending on the day of the week but this week, I am really, really starting to get scared. The pain has been 10 times what is has been in the past, which was already a "10" and it is preventing me from walking. Two days in a row now, I could not walk, at all, for several hours.
I don't know why I am so shocked....why I have foolishly felt "immune" somehow, hearing stories of others in wheelchairs, undergoing hip replacements and today ironically heard of an amputation! (not sure of the details on that) But I do read when I can, the posts on the lyme support groups and they all are undergoing aggressive treatment to some degree. They are working at killing these "bugs" while I just lay in bed, praying, crying and sleeping with no other option due to the politics of this disease and the refusal for mainstream medicine to treat me appropriately. I could find an LLMD, but insurance won't cover it, so, I lay here and slowly die.
I heard a story about a dog the other day that really hit home. The owner told me, her dog had all the symptoms, but the labs were negative. Because the vet believed the dog had lyme she treated her regardless. She was given a course of doxycycline and was cured! Why in the world would a doctor not treat his patient with the same bit of humanity? My son was on doxy for two years for acne yet mainstream doctors won't give a prescription for any length without a positive blood test and with one, a minimal dose not long enough to eradicate it. What gives here? If only I could go to my vet for treatment, or get teenage acne again! I'm so glad they take that more seriously than my joints being destroyed by God knows what creatures that are lurking in my body.
I am so so grateful for my friends who are working hard to make sure I do get the treatment I need; that is what keeps me going. If I had no hope of recovery, I would have made other plans long ago. We need to get me treated, before I end up in a wheelchair because I plan on walking up the steps in Washington and changing some laws that need changing! First on the list, is to make sure the doctors trained in treating these diseases can continue to treat Lyme patients without fear of losing their licenses, and I plan to beg if I have to for more funds for education.
I had a conversation with a doctor on a plane on one of my last trips to see my Dad. I was shocked at what she said to me. In med school, she was told by her professor, "this is what Borrelia Burgdorferi (the lyme spirochete) looks like...not that you will ever see it in your medical careers, but I just wanted you to know what it looked like"! The single fastest growing infectious disease in America, and that is the priority given to educating health professionals on Lyme. Film maker Andy Wilson refers to Lyme as the next tsunami...all I can say is, we better head for high ground.
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