October 29, 2013
Wow! I can hardly believe it's the end of October; Halloween is upon us and fall is in full glory! Living in California and being born and raised on the East Coast, I miss the change (the true change) of seasons and all the little smells, feelings and beauties it provides. Granted there were plenty of times I didn't appreciate them then but like other losses along the way, I sure do now! Living the LA life has made me a wimp when it comes to temperature changes. The rain and fog here are felt in my bones and the cool dips of temperature in the evenings at times make me want to break out that old winter parka!
This fall, life has been pretty calm for me and the virus overall. Granted I have a new skin condition that causes me to have itchy skin colored bumps on my back, arms, chest and face. I think it's viral in its nature because I've used my handy-dandy fungal cream, which I swear is a cure-all, and it hasn't touched it at all! The bumps are not that visible until I scratch them open and then after the watery blister center kind of opens then you can see its redness and I'm pretty sure by my scratching I am the one doing the spreading but alas I'll ask my doctor at my next visit. I'm sure she'll make a proper diagnosis. I have restarted on Stribild and am trying to manage the side-effects as best as I can. So far so good -- I guess we'll see if that drug likes being in my body this time around ... it didn't last long the last time we tried the "Quad pill" so this round I'm trying to be more optimistic!
My heart and lung issues are still a perplexing situation and I still have multiple physician appointments to continue to get them straightened out. I had the pulmonary tests and while I know they are not truly meant to be Pass-Fail, to me they felt like that. I felt like an idiot having to blow air in and out of those tubes, forgetting actually for those 30 seconds that I really still did have control because I could simply take my lips off the freaking mouthpiece! Believe me when you feel like you can't breathe, you do want some control! Or at least I do. Simply removing your mouth from the mouthpiece is probably a better idea than risking chest pain by trying to please the respiratory therapist in that very moment! You can always get a retry on that test! No visit to the principal's office necessary.
The most time-consuming process for me though lately has been this somewhat experimental, largely approved and accepted for use by psychiatrists and neurologists "magnet therapy" that I have been undergoing for the last three weeks or so. It is when you get a magnet strapped to your head and they send pulses somehow increasing in frequency and duration to help shift the neurons in your brain (don't quote me on that 'cause I'm not sure I have all of that scientifically correct) so that they can treat the symptoms of mood disorders, affected concentration and energy levels. While I am getting this daily treatment done, which takes about a little less than an hour, you hear a tapping sound which literally sounds like a woodpecker pecking away at your skull. The weird part is that there is nothing, absolutely nothing, tapping away at your head. Nothing reaches out and touches you. It's all done through the magnet and it reaches in through the magnetic pulse to navigate all the way through your skull to your brain to focus on the portion of the affected area which is about the size of a mango. It's all very high tech and sci- fi for me so I don't really focus on understanding the process' I leave that to the experts and just try to get through each session.
I'm not sure how much longer I'll be doing that magnet process or if I am really seeing any great results yet, but my husband and my best friend do think that they see some benefit and want me to continue as long as there is no harm to me. I can see their point of view even though I'm the one who has the hassle of getting to and from the treatment and then participating in the daily treatment. So as long as my medical team wants me to continue and my insurer continues to pay, then I will stick with the process, because my body tends to be a little different than most people's. I'm always the one it seems to get the adverse reaction or have that 1:250 chance of contracting something etc etc. ... you get the drift. It's just in my immune system. I think I came out of the womb that way!
So I guess if I had a true thought to ponder today with all of this, it would be: At what personal cost or sacrifice am I willing to explore and try different treatments to alleviate symptoms or seek remedies, not just for the HIV virus itself but also for the opportunistic infections, for the dementia and for the simple bothersome symptoms that come my way? I'd have to really take the time to deeply explore that because I'm not certain that my husband, my family members, my children and my closest friends and I are just naturally on the same wavelength. They seem to be more inclined to grasp onto any stream or recommendation for a possibility of relief or cure or appeasement.
I on the other hand am more than willing to try almost anything and give it a fair attempt but I am realistic if the treatment isn't for me, stops working or doesn't get the right result or causes me more pain than positive outcomes. Some would say I'm willing to walk away too soon. I would disagree with that vehemently. I would say I know exactly when to cut my losses and move on to the next step and I am lucky and grateful and so indebted to the men and women who came before me that there is even a next step, but I DO find that next step. It may take me a while but I find it. That's how I've made it through 21 years and that's how I expect to make it through the next 21 years.
So if the magnet fails me, I say let it go. Perhaps after one last college try when I've reached the maximum pulses you can give a person -- then let me go, knowing that my treatment team did the best they could do. Hey -- really I won't miss the sound of the woodpecker pecking at my head. REALLY. It truly is that annoying. :-)
Until next time,
Read Lynda's blog, Get Outta My Head, You Crazy Virus!