• Lyme Lens

Where've ya been?...

I get that a lot these days. Where’ve ya been? Haven’t heard from you in forever, what’s up? You been ok? Hey girl, didcha crawl under a rock or sumptin? I just pull out the usual platitudes. The usual excuses when one has a chronic illness…. oh I’m fine, thanks for asking; haven’t been feeling well; lots of doctors to see; was in the hospital; you know the usual excuses that one can fall back on when chronically ill that stops nosy friends and neighbors from prying any further into the real reasons as to why they haven’t seen or heard from you in the past six month.


Some of it is actually true. I WAS in the hospital but how do you tell your friends that you had to get admitted because you couldn’t stop the endless diarrhea you had for months despite every medication you tried. That after wearing adult diapers for four months and passing the illness to everyone in your household you simply could not tolerate another minute. That you didn’t lose a damn pound despite living on the toilet, soiling yourself in bed to the point that you were afraid to close your eyes to sleep and being unable to leave your home for fear of an “accident” in a public place. That NO doctor had any answers for you about how to stop it. That you lived bringing samples to the lab next door which they all said were normal or “rejected” for only God knows what reason. Then there was the almighty violation of all….the colonoscopy. How is it that a person my age…45 years old has already survived a prep for an office exam, a flexible sigmoidoscopy, and two…TWO mind you colonoscopies along with intestinal surgery in 2003 which was hell on earth. Isn’t it enough to suffer with Lyme Disease?


So, for six months I decide to disappear for a while. I got the whole bowel infection under control and then I find out that the thyroid medicine I was on had basically come within inches of putting me into cardiac failure during the physical therapy visits I was doing in order to get stronger!!!! Here I am, struggling through PT visits, with excessive sweating, shortness of breath, tachycardia (fast heart rates) thinking it is only because I am out of shape and all along it is the damn medication that is getting ready to kill me. I was instantly pulled out of PT, placed on bed rest and yanked off the medication. Labs are being drawn every two weeks in the hopes that this Grave’s Disease is only temporary and will reverse itself simply by stopping the medication. Yippee, a whole new set of side effects to endure as I lie in my bed for the next few months.


At the beginning of January, my knees were “attacked” with some kind of either bone virus, severe inflammation, reaction to the barometric pressure outside, an arthritic condition or the Lyme Disease has reared its ugly head. I was unable to bear weight without severe pain on my right knee. The swelling wasn’t bad but it was constantly “cracking.” I decided to wait it out before seeing yet another doctor. I tried every home remedy I had from pain meds to patches to wrapping it but nothing was easing the pain. Within days, the pain had spread to my left knee. I decided just to tolerate it and wait for my next doctor’s appointment which is in a month. It wakes me up in the night but I do the best I can to tolerate it. I have no heavenly idea what it is and I wonder if it is related to stopping my thyroid medications.


There have been other changes since stopping the thyroid medications too. After seven months with no sign of a menstrual cycle and none of the accompanying symptoms, it returned today. I had two or three days of typical PMS symptoms, terrible cramps yesterday and right on cue today it decided to show up out of the blue. I must say that I was stunned. This has to be an effect of the pituitary gland waking up again in my brain when we thought it was permanently dead before due to the thyroid. Wait until the Endocrinologist hears this!!


Needless to say, when I have “disappeared” for long stretches of time it has always been for good reason. Typically I just need to be left the heck alone because how would you feel if you were undergoing all of these changes to your body? Do you think that you would be feeling very social? Would you want to chitter chatter on the phone or email? You most certainly wouldn’t want to accept any company to the house when you are on your sickbed, looking like crap, running to the toilet every 20 minutes and sometimes not making it in time now would you? I am sure that would make for real pleasant company now wouldn’t it. This stuff is hard enough to even talk about, can you imagine having to LIVE IT. I am sure you can try to at least sympathize.


Needless to say, disappearing for six months or more feels like it has only been a matter of days because trying to survive constant illness like this makes each day run into the other. Holidays pass and we don’t notice, nor do we care. We always try to make an effort for Christmas but sometimes even that one has to wait. Luckily we managed something small this year but Halloween and Thanksgiving were spent with both of us sick to our stomachs on our respective couches. It’s not that I am complaining by writing this post, I am trying to explain to well meaning friends who don’t hear from me for a while.


Please don’t take it personally if you write, text or call and don’t hear back from me. I may be in the middle of some personal health crisis and it completely slips my mind. It sounds cruel to say but I may just not be in a very good frame of mind to call back. Oftentimes, I just want to be left alone. I am sleeping, managing pain, or just plain too unkempt for any visitors. Being sick can be a lonely life but it is one I have come to get used to and a solitude I have come to enjoy.


Please understand that it is no affront to you or our friendship, it is just what I need to survive this illness. I pray that you will accept my request for solitude and comprehend the reasons why, now that I have shared with you what it is like to live in my shoes as a reality. I apologize for the graphic nature of this blog but it was necessary to get the point across. l still hope to get notes regularly despite my incapacity to return. They really do lift my spirits. Thank you in advance.

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