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HIV/AIDS Blog Central

My Horrific Seven Months

By ScotCharles

June 13, 2012

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A psychologist comes to visit me every Tuesday at 8 a.m., courtesy of AIDS Project LA. I was very weak with fever, but we did our usual hour together. Peter, the psychologist, called Jim after our session to tell him that I seemed confused and disoriented. He thought I was having a crisis with my cognitive disorder and suggested that Jim call my psychiatrist. The psychiatrist was very concerned and called my IDS who had recently returned from her trip to Tanzania. My IDS, Dr. Shriner, upon hearing my symptoms arranged for an immediate trip to the emergency room. I thought I just had a fever probably caused by whatever bug the throwing up man had who shared Jim's room in the ER. I didn't feel I had anything serious.

At the ER, tests showed my kidneys, liver, lungs and heart were failing. My blood oxygenation was low and the doctors thought I may be having a recurrence of the PCP I had in 2004. I am allergic to Bactrim, which is usually used to treat PCP, so I was started on intravenous Dapsone. I had taken Dapsone for years after my bout with PCP. Almost immediately after the start of the Dapsone, my face turned beet red and splotches started to rise on my torso. My blood pressure and pulse began to drop. Somehow, I had developed an allergy to Dapsone. While the doctors were tugging their chins as to what to do, a nurse said, "Why don't we stop the Dapsone?" The doctors continued to tug their chins. The nurse said, "Fuck it!" and pulled the Dapsone whereupon the rash disappeared immediately. I passed out about this time and have no memories until I awoke a day later in the hospital.

When I awoke, the light in my room caused severe pain in my eyes and the lights had to be turned off and the shades pulled at the window. I had a catheter shoved up my penis. I had a shunt in my neck into which was pouring several bags of stuff. After several CTs, PETs, and blood tests I was found to have viral meningitis. One of the tests was a lumbar puncture which was botched by a neurologist I had dealt with years before when I first began to experience neuropathy and weakness in my legs. The puncture had to be redone the next day by a more competent doctor.

The tests showed that I had deficits on the right side of my brain and losses in long-term memory and learning ability. I developed a tremor that I have even now when I do fine motor functions like chopping vegetables or planting in my garden. After a week in the hospital I was released.

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I was very weak after my release from the hospital. The least effort tired me out. Spring in my garden is a busy time and I tried to do the necessary work but found that after a half hour I was winded and tired. It has taken two months for me to gain back my strength. I am much better now.

So what have I learned? First, to be thankful that somehow the Universe saw to it that both Jim and I were surrounded by people who could help us when we needed it. Second, that Jim and I need the support that AIDS Project LA and my doctors give us. We are very lucky that a person who could help us was there when we needed her. Community is important. And third, to be grateful for every second of life we are given.

Due to my cognitive problems, I have trouble with compliance with medications regimen. I am working with my psychologist on this problem. My heart attack has made me suspicious of the meds since they were a contributing factor to my attack. I have developed an aversion to the meds because of the attack, which I am working through with my psychologist. I am concerned that I have developed an attachment to the serenity I feel when I am seriously ill.

This last issue arises from a childhood experience of "Oneness" I had that I have never been able to replicate with drugs, meditation, or religion. When I had PCP and had to concentrate on every breath, I came close to my childhood experience. The weakness of my latest serious illness cleared my mind and gave me a glimpse of that childhood experience. I am probably too fixated on this concern that I have begun to love being ill. But, who doesn't remember the comfort of a nurse visiting you in the lonely hours of the night? I may be silly, but there it is.

Life goes on. The lilies are blooming in my garden. I have seedlings ready to set out -- bedding dahlias, sun flowers and dill. The birds are tearing apart the coconut husks I have set out for them to build their nests. The fruit trees are setting fruit. I sit in my garden in the cool dusk and marvel at the beautiful complexity of nature.

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Reader Comments:

Comment by: Bernard (Philadelphia) Wed., May. 29, 2013 at 2:12 am EDT
Hi Scott...I hope you are doing ok? You have not posted recently and just wondering what's going on in your life? I find your blog very inspiring especially when you discuss your trials and tribulations with the early onset of HIV Dementia. I am currently dealing with the same diagnosis and there are not a whole lot of people blogging about it on a personal level. Well...enough for now and I hope you are doing fine.

Best Regards,
Bernard M.
Philadelphia, Pennsylvania
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Comment by: Bernard M. (Philadelphia) Fri., Jan. 18, 2013 at 10:51 pm EST
Hi Scott,

Very glad to hear from you. I am basically in the same boat as you are except most of the time I have difficulty finding the oars, so to speak. Sharing the details of your life and illness has at a minimum help me locate an oar every once and awhile. Keep up the good fight and I very much look forward to your next blog post!

Best Regards,
Bernard M.
Philadelphia, Pennsylvania
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Comment by: Mike (Los Angeles, CA) Thu., Sep. 6, 2012 at 7:26 pm EDT
A gripping account. It shows you how we are simply not "bullet proof", and surviving is like waiting for the shoe to fall off...
Cardiac issues are incredible with HIV as well as stroke concerns as you articulate. Very fortunate that you were in a medical facility while you were getting this intense "warning alert" that you were going into cardiac failure.
One can only imagine how many others are out there, but only silent, who slip away into the night.
Lifestyle and living with toxic meds that save our life, as we lose our independence (as our careers slide away) is a reality.
Living with a partner who can "back you up", is vital. The lone ranger, doesn't last too long.
Mentally, the awareness of all this does not help, but it is what it is...
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Comment by: Bob (Denver) Wed., Jun. 27, 2012 at 1:14 pm EDT
O.K., but what is your real problem? I sympathize (sp?) totally---I had PCP back to back, and hope you are feeling much better. My doctors told me later--"We'll bury this one".
They have had no such luck!!!!
Again, hope you are recovering nicely--get back to the flower beds--they need you!
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Comment by: Dee (Pennsylvania) Wed., Jun. 27, 2012 at 11:52 am EDT
Your article initally made me chuckle at all the awful things that happened-the rainstorm, the lady who guzzled the Scotch, etc. As I read, however, I grew more pensive. You are such a graceful survivor. Your words truly amazed me-all the illness, the side effects, the stroke of your partner, your physical pain-yet you still make time to get out and plant in your garden, chop vegetables, and enjoy nature. There are people who have endured a lot less but who complain so much more. I'm not minimizing anyone's struggle, but I am marveling at your love of life and endurance. I am sending you and your partner thoughts of of love and peace. I am thanking God for allowing me to stumble upon your story. I will pray for you both and I hope you have a long enjoyable life of love. Keep sharing-people are reading :-)
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Comment by: Brittany (New York) Sun., Jun. 24, 2012 at 10:34 pm EDT
I'm in awe of your ability to remain mentally serene through times of such difficulty. I wish the sense of oneness of which you speak were more easily accessible to you (and to all of us) outside of times of crisis.

Thank you, very much, for sharing your story with us. I wish you health and peace. Happy gardening! : )
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Comment by: Ken Warnock (Royal Oak MI) Sun., Jun. 24, 2012 at 8:34 pm EDT
I know I've had a couple of rough years with relapses of cryptococcal meningitis, but you have had an especially rough and challenging time! Stay strong!!

Peace,

Ken :)
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Comment by: Anonymous Mon., Jun. 18, 2012 at 6:41 pm EDT
So sorry that you guys have been having a rough time. I will keep you in my prayers. Thank you for writing, I have been wondering how you are.
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Comment by: Sheri (Ohio) Mon., Jun. 18, 2012 at 12:10 pm EDT
ScotCharles, it's good to see an update from you. With so many challenges and frustrations, I'm glad you have your lovely garden to enjoy! I appreciate the straightforward honesty in your blog posts.
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Comment by: Green Trees (Atlanta) Thu., Jun. 14, 2012 at 10:46 pm EDT
Hi,
I read your blogs whenever you post. I am very sorry to hear of your recent troubles, both you and your partners. I plan to keep both of you in my prayers. I read your blog today, and I felt humbled. In the midst of everything you're going through 1) you found time to post and 2) you still find a way to maintain hope, be appreciative, and find beauty. You make me want to go out and find beauty in my world too.

Stay well sir, and God Bless!!!
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Replies to this comment:
Comment by: ScotCharles (Los Angeles, CA) Sat., Jun. 16, 2012 at 4:03 pm EDT
Thank you for your prayers. The world is full of miracles if we would but see them.
Comment by: Dee (Pennsylvania) Wed., Jun. 27, 2012 at 11:53 am EDT
Green Trees, your comment is so true. This article makes me want to appreciate the beauty in my world as well.


Comment by: Jane (San Jose, CA) Wed., Jun. 13, 2012 at 3:44 pm EDT
Hi Charles,
Wow, what a journey you and your partner went through! I was glued to my computer reading your story of what has transpired over the last seven months! I am glad you made it and wish you and your partner all the best!
Jane
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Replies to this comment:
Comment by: ScotCharles (Los Angeles, CA) Sat., Jun. 16, 2012 at 4:04 pm EDT
Thank you for your wishes.


Comment by: Bob (Canada) Wed., Jun. 13, 2012 at 2:58 pm EDT
I don't know how I came across your blog,, but I subscribed,,, and since then this is your first entry,,,
It is received with much gratitude,, your sharing is educational and inspirational,, I admire you in so many ways,,,,
I also am enjoying my garden,,, and yes it is difficult to keep up the energy,,, lilies blooming here, roses too,,, take care and thanks for sharing cheers Bob
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Replies to this comment:
Comment by: ScotCharles (Los Angeles, CA) Sat., Jun. 16, 2012 at 4:06 pm EDT
I have posted many times and invite you to read my past posts. It is good to hear from a fellow gardener.


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ScotCharles

ScotCharles

ScotCharles was born in Mineral Wells, Texas. He has been HIV positive since September 1984, and received an AIDS diagnosis in April 2004. He graduated cum laude from Georgia State University in Atlanta, and got his MBA with honors at the University of Edinburgh in Scotland. He's also a certified public accountant and a member of the Honorable Order of Kentucky Colonels. He's been married to his partner, Jim, for 30 years. ScotCharles' hobbies are gardening and water color painting. He and Jim have a sable tabby cat named Pickles who runs the house. ScotCharles is a retiree and regular poster to TheBody.com's Bulletin Boards.


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