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Hanging on for the Ride

February 10, 2015

Well, January is almost over as I write this and it's been a crazy end to 2014 and a wild start to 2015. I've been hospitalized several times already and have had some major life changes, some good, some bad and I'm learning to roll with the punches. The end of the year saw my oldest son get engaged and we had a huge party to celebrate. He's in the Marine Corps and as we welcomed his fiancée into our lives I couldn't be more proud of both of them and it feels great to be here to celebrate that milestone in his life.

When he was little and I was on the speakers circuit I used to say that I wanted to see him get to be seven years old. Wow have I passed that milestone as he will be twenty this April. Time does fly! My mom turned 70 this year and I went back East to celebrate her birthday and in that travel it brought me to the bright lights of NYC and Philadelphia but also exposed me to the freezing cold and lots of germs. My lungs just couldn't handle all the infectious people and viruses and it started a nasty downward trend in my health and multiple hospitalizations for COPD exacerbation and bacterial infections and pneumonia. I spent both New Years and another week in the fabulous hospitals of UCLA. Fun? NOT! Necessary? YES -- cause I want to be able to breathe. Now home on multiple breathing treatments, steroids, antibiotics, antivirals and antifungals, life has started to get back to normal. My T-cell counts are still plummeting thanks to the prednisone and my viral load is still not undetectable but I'm doing my best and definitely staying compliant on my HIV medication regimen.

That's a first for me. I seem to have turned the corner in my struggle to take my meds. I'm not really sure how I've cracked the code here. I'm not really sure how my mind and body have connected and made peace with one another but whatever it is it's working with little effort on my part actually. I am on the Marinol around the clock and Ativan daily so maybe that's the secret? In addition to helping with the nausea maybe it's helping to me to bridge the gap, relax and take the meds -- I don't know. Maybe it's the fear of the awful g-tube again?? I don't know; maybe it's my weekly attendance at Mass and my ever-evolving relationship with God. Whatever it is, I'm not messing with it!! I'm just thankful that I'm in a place that's working for me!!

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I also recently have been travelling -- well in and around my hospitalizations. I took a quick cruise to Mexico and had the time of my life with my youngest son and my future daughter-in-law! I even went parasailing! I even let my son do some shots of tequila which was a rite of passage that he kind of thought was cool and I laughed as he promptly took a three-hour nap after the fact while I hit the casino!

I traveled to Oklahoma and to Texas with my daughter for her college auditions. She is a musical theatre major and is auditioning for some of the top BFA programs in musical theatre where the competition is fierce; but she was recently named a Young Arts 2015 National winner and we couldn't be more proud of her for her tenacity and talent in this crazy business and hope all her dreams come true! Traveling with her now that she is finally 18 is like the final frontier -- soon she won't need her mom anymore and all those things like touring, working, traveling, auditions and booking gigs will be things she'll be doing on her own in the big bad world of show business for college and beyond!

The bad news in all this is that the DMV did rule against me and took my driving privileges permanently away from me. I am no longer a licensed driver. We lost our appeal after they received the report from my neurologist. It was a well written report and she had written asking for them to actually test me although in her professional opinion, with all my neurological problems with memory, tremors, visual spatial deficits, etc., I wasn't safe to drive. I guess they just thought it was best to say no and take my license. It's OK; I actually handled it better than I thought I would. I'm used to using the Access system now. I have the option to use Uber when necessary and my youngest son now has his driver permit, so by May we will have all our kids driving, so my options will be open to be chauffeured around. It's the freedom to just get up and go anywhere anytime that I really miss.

I started walking my puppy more. There are a few area stores now within walking distance of my house that weren't there a few years ago when all this started, so that has eased the trauma a bit and my psych meds help to keep my moods bright and keep me from falling down that dark hole of despair and self loathing. It would be easy to feel sorry for myself. I need to remember to reach out to friends and family and make plans either by myself or with others so I can maintain my quality of life; being a non-driver isn't the end of the world but it is an unfortunate by-product of having a diagnosis of AIDS dementia complex.

I'll be 46 this May -- the big to-do list foreshadowing my birthday is to quit smoking. It continues to loom larger and larger every year but this recent bout with the lung complication is making it paramount. I want to try to start using the vapor cigarette systems and I have tried the pills, the patch, the gum, and quitting cold turkey and nothing has worked for me. It's really important as I also suffer from Prinzmetal's angina and my cardiac output is also on the very low end of normal so I need to also get that under control as I am always tachycardic and in December I was hospitalized for that as well. I did pass my stress test and echo but spending the weekend in the hospital was no walk in the park.

HIV disease and smoking are linked to higher frequencies of death and I know that I'm no idiot and I want to be here for my family. I want to see my grandkids and see my children through all their milestones. I've been through so much that dying because of smoking just seems so pointless yet I'm an addict through and through and just can't quit the habit. It's my thing. My one vice and a huge one at that. I really need to zone in and get the help I need and right now I feel that the only thing I may be able to do is try to minimize any ill effects and move toward vaping. I'll let you know how it goes as I meander down that path. Who knows? Maybe it'll work in my favor; at least my doctors seem supportive of me trying it out.

So as you can see this year has already had its ups and downs. I think it's been pretty challenging staying on top of everything but as a mother and wife that's what I do best. I learned to multitask somewhere along with the adoption of our second child I think!

I think 2015 is going to be an interesting year -- not too bad and not too good. Maybe it'll be just right. Life will keep moving along and I'll just be hanging on for the ride. I guess that's all I can really ask. If my brain continues to keep working and my body holds up, I know my soul will be filled with the joy and peace from family, friends and my furry loved ones! Hope yours is moving along as well ...

Until Next Time!
Lynda


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Lynda Arnold

Lynda Arnold

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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