Why Cry When You Can Laugh About It?
By Lynda Arnold
October 16, 2013
I'm not sure where to even begin this blog today. Since finding out I have HIV dementia, it seems my life has literally turned upside down. I've suffered through several losses of my independence. However there have truly been some really comical moments. Most have seemed funnier when I stepped away and looked back at myself not when I was right in the moment. However my friends and family members found them hysterical at the actual time they were occurring.
Part of my disease process affects how I see things spatially. I have real difficulty putting things together or manipulating objects. My career choice and educational background is that I am a registered nurse. I have my RN license (or had it). I have my BSN and I even have my MBA. So one would think that with all that education, even with my dementia complex I would still be able to do certain things. Things that would be considered routine and simple for a woman of my background. Well as it turns out not only can't I pretty much recall any of my nursing training or knowledge base but I can't put on a blood pressure cuff the right way to take my own blood pressure, nor could I figure out which size needle to use (large vs small) to give myself my own subcutaneous (under the skin) injections of Neupogen that I had to self-inject for several weeks. I've had issues manipulating batteries, kitchen objects, as a passenger in a car being able to judge distance of the other cars, manipulating the locks on the doors, folding laundry and loading/unloading the dishwasher. It is true I am a stellar housewife! (not)
Another part of my disease process affects how I move my large muscle groups. I particularly have issues with hand tremors and getting my legs to do what I need them to do at certain times. My hand tremors always seem to get in the way right when I need to sign my name. It generally only affects the Lynda part. I can't seem to coordinate the letters so that the "nda" part is legible. I start out strong and lose the momentum each and every time. It also affects me if I'm holding anything of a hot or cold temperature, the shakiness almost always guarantees that I'll be wearing what I'm drinking. So to compensate for that even as I love my Diet Coke drinks I have now almost exclusively switched to good old-fashioned water so that it's not visible when this happens :-). My legs and my brain seem to disconnect when I hit any type of movement that requires an extra effort such as walking down a set of stairs or a set of bleachers or even climbing over a baby gate. My legs just can't seem to get in sync with my brain to get the correct action and look natural doing it. I have been known to literally crawl in these situations just to get to my final destination since my brain doesn't want to cooperate. That in itself is a show to watch! I'm surprised my friends and kids haven't started selling tickets yet to those events!
The dementia complex affects almost every part of my brain and therefore it affects everyday actions that mostly I used to take for granted. My oldest son who is now 18 passed his driving test on the same day that I surrendered my driver's license and got my non-driver ID issued. As we added him to our insurance policy and removed me, once again the irony became crystal clear. HIV dementia is something I'll continue to deal with for the rest of my life.
Aside from the complex though, my hair is thinning and falling out at an uncomfortable rate for me! I've discussed this with my HIV specialist and she says it's very common in both men and women! I had a similar pattern many years ago when one of my drugs made that happen and my solution then was to cut my long hair and go short. Well now that I have short hair- I'm debating what to do. I've been coloring it to hide the grey but supposedly that can accelerate the hair falling out part so that's not a great idea. So as my grey starts to reemerge I'm afraid I'll look like a zebra which isn't gonna be my best look!
My friends and I have been considering the alternative: for me to go real short and while it grows back, hopefully healthier, use some scarves and head wraps. Now this would seem like a great plan but if I can't use a blood-pressure cuff correctly, pick the right size needle to self-inject, climb over a baby-gate, move up and down a flight of stairs, walk down a street without tripping over my own two feet, use a toaster correctly, change the batteries in a smoke detector or a remote without help etc etc ... I can only imagine the stupid, silly mistakes I would make with a head wrap or a scarf!
So maybe some of my readers out there have had this issue of thinning and falling out hair ... what did you do? Any suggestions? Any help if I do decide to go the scarf and head wrap avenue? I really don't want to look "sick" but I don't want to look like a zebra with very thin hair either. I've searched the internet specifically for answers regarding women and hair loss and HIV and haven't found any real data or studies that could help me so it seems that it's something people just accept or maybe don't talk about. I want to talk about it because I need answers and if I have the question then I'm sure someone else has the question too.
So the dementia complex comes with its own host of problems which can illicit some humorous moments even without talking about memory, judgment, impulses and decision-making ! Before I make that next decision about what to do with my ratty looking hair, I don't really want to set myself up for failure when I can forecast some very humorous moments wearing a wig or a wrap since either would require a steady hand and an eye for visual-spatial placement. Since it's something I may need to wear often, I actually would like to succeed.
Until next time.
Get Outta My Head, You Crazy Virus!
Lynda Arnold, RN, BSN, MBA, was one of the first health care workers to go public after her occupational infection with HIV by an accidental needlestick in 1992. She successfully launched a nationwide campaign for safer needles in hospitals and medical facilities which resulted in the passage of federal legislation mandating the use of such devices in facilities nationwide to protect all health care workers from accidents such as hers. For many years she was a sought-after speaker on living with HIV/AIDS as well as health care worker safety issues, and she traveled the globe educating others. She garnered many awards, national distinctions, authored two children's books, and was the subject of an award-winning documentary. After the birth of her youngest son, Lynda chose to step away from the public eye and focus on raising her young family without the spotlight. As a blogger for TheBody.com, this marks her reentry into the public eye -- 20 years after her infection. She can be reached for further engagements, commentary and questions through her email.
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