Apr 132014
 
The blooms on the magnolia are just some of the bright spots in life right now.

The blooms on the magnolia are just some of the bright spots in life right now.

This has been one of the hardest, coldest winters I can remember for awhile. Certainly not the worst winter of my life, but a brutal one for someone who often ponders that one summer I spent living in Fortaleza, Brazil as a teen missionary. A place that does not know what snow is, and thinks of ice only as something to chill a beverage. Where temperatures vary only a few degrees year round.

Today the daffy-dills are open in full bloom, so thick that they beg to be thinned out and transplanted later this year, but it is still too soon to have to think about getting the lawnmower out. It is my favorite time of year in Kansas City, and it will last only a few weeks, if we’re lucky.

I have been hearing from friends who have visited the blog to see how I am doing, only to notice some incomplete changes, and little in the way of news. The winter season, when I spend endless hours at the computer, has come to an end and my attention is turning towards projects involving our home, where we will probably live until we die. We have been able to finance the construction with equity in the house so far.

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The 1930 cast iron soaker tub is finally in its niche.

The “new” bathroom (using fixtures built in 1930) is this year’s objective, but as with any home improvement project, nothing exists in isolation. To get plumbing to what was formerly the middle bedroom, we had to remove the sheetrock and framed walls of the “finished basement”, only to discover the foundation had suffered moderately severe damage in the form of cracks. So, instead of filling the soaker tub with water, I have been grinding concrete, mixing epoxy and injecting foam to seal the cracks, and will pick up steel beams tomorrow to shore up and stabilize the foundation under the basement.

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Cracks everywhere. The engineer swears those little carbon fiber staples, along with some steel beams, will stabilize this wall for another 50-100 years.

I play at these tasks only a few hours a day, and take frequent naps. There is no such thing as a “typical” day, but I am writing this at 3 am because it is difficult to sleep more than a few hours at a time, but neither can I stay awake for more than a few hours. My days are a series of naps and nearly manic activity. I have not timed myself, but I’m probably sleeping away half of my life these days, and that’s an improvement.

Michael and I have both suffered miserable bouts of respiratory distress this past month. I don’t know what to call it. Chest cold? Flu? Bronchitis. It’s an intractable cough that produces little. In the acute stage, Michael was so sore from “paroxysms of coughing”, as a friend calls them, that he could barely walk.

My own version of this creeping crud followed his symptoms almost exactly 36 hours later. He dutifully took a course of antibiotics and prednisone. I balked, but on day four I emailed “I give up” to the doctor and begged for relief, too. To her credit, she recommended I hold off on the antibiotics, but did give me a powerful batch of prednisone, which did provide some immediate relief, thank gawd.

Now, the crud just hangs on. Not nearly so severe as it was, but still an energy-draining persistent cough that only bed rest seems to allay.

There is nothing exceptional about this seasonal misery, and we’ve heard of many friends who seem to be suffering similarly. So it seems it would be appropriate to report that my health “is fine” otherwise.

I’m waiting again on those damnable numbers, both orthodox surrogate markers, as well as organic acid and stool analyses. I hope to see a continued improvement in the trends following the good reports from a few months ago.

Eating well is a struggle in the best seasons, and an impossible ordeal in the winter, it seems. I worry that I’ve been negligent on the nutritional front and that may show up on some of the tests. I have figured out a way to make the MAF 314 cultures last longer than I ever imagined, and I have been making the “magic yogurt”, as well as homomade sauerkraut. I continue to focus on being kind to my gut.

I take my supplements, and have been dabbling with some extra oils: black seed; hemp and coconut oil. Financial considerations have caused me to take a break from intravenous vitamin C and UV blood irradiation. I haven’t been to the Riordan Clinic for months, but am thinking about going there this week to get an infusion to see if that helps with the lung inflammation and now chronic coughing.

My last attempt to self-infuse was a failure and a major discouragement. I was unable to hit a vein myself and I ended up dumping 75 grams of IVC down the drain. It was only the second time out of dozens of self infusions that this has happened, but it hurts like hell to fail. I think I have figured out a way to ensure I don’t waste an entire batch if I fail to get a hit in the future, but it will require some help from Michael

I also experimented with cannabidiol oil late last year. I thought I noticed some benefit from it. Like the IVC, it improved my mood and my energy, which are my two most persistent complaints. Also like IVC, the price was unsustainable and I was only able to take it for a few weeks. What followed when I ran out of the elixir was a return of severe fatigue, and eventually the bronchitis. I have re-ordered the oil, but it is back ordered and now I wait.

As I wrote last October, I have resumed taking boosted low dose darunavir antiretroviral monotherapy. I will soon learn whether that continues to move my viral load down, while increasing CD4 count and percentage. So far, I have been able to avoid having to pay for the drugs, and it’s not thanks for Federal largesse, or Ryan White funding. I would have to pay nearly $3,000 before being eligible for any assistance.  So far, I have been able to meet my supply needs with surplus drugs from other patients who are also experimenting with this protocol.

I had to laugh when I opened this envelope, sent to me from the UK. Such caution and care used for a few thousand dollars worth of pills!

I had to laugh when I opened this envelope, sent to me from the UK. Such caution and care used for a few thousand dollars worth of pills!

Ironic, is it not, that an “AIDS patient” in the United States is receiving drugs paid for by European governments? I’m guessing they have another word for it, but my conscience is clear, and I am thankful to know these friends for so many reasons besides just the free drugs.

So… how am I doing? I am alive and grateful. My body aches and protests more than ever, and I tell myself that is just another thing to be grateful for.

I fuddle through my chosen projects. I feel the vaguely familiar signs of “brain fog” that plagued me years ago when I was taking so many pharmaceutical drugs. The website that I had such high hopes for is in hiatus, awaiting my attention. Just this morning I tried to make it easier to find the blog for those who are confused with the new “reAIDS” name. I still feel there is a need for a new gathering place, but I need some help, mostly in the form of encouragement from others who feel likewise, I guess. In the meantime, we’ll have to stay in touch with Skype and Facebook.

Simple things are no longer so simple. The old adage “measure twice, cut once” has never been more true for me. I’ve always struggled with staying focused when multi-tasking, but sometimes my brain gets so busy with all the things it wants to do that my body simply wants to shut down and rest.

I’m feeling… something. Older, perhaps? I fear I have so many things I want to accomplish so I can “retire” with some degree of comfort; a bathtub I can actually stretch out and soak in, for example. Maybe it’s the renewed rounds of personal losses, but I’m feeling very, very mortally fragile.

I am still recovering from the sudden loss of Gos Blank and watching from a distance as other friends struggle with their own forms of bizarre and crippling health. It makes me feel I have no right or business to complain about my own symptoms and signs.

Oh… I do wear a hearing aid now. Or rather, I have a hearing aid sitting on my desk that I can wear if I want to hear better. The hearing loss is “unusual” according to the ENT specialist, who suggested a scan for a tumor on the auditory nerve. “Let’s see if it gets worse,” I told him.

I’ll get my eyes checked next week. I know I need new glasses, but that’s because the lenses are so scratched on the ones I wear now. I haven’t been very good about follow-up with the opthalmologist since the shingles outbreak in my left eye a couple of years ago.

The next major adventure will be a trip to Colorado to celebrate my mom’s 90th birthday next month. I really hope this cough is gone by then.

That’s about it for this early Sunday morning stream of consciousness update. I hope it suffices for those who drop in to see how things are going. Feel free to find me on Facebook if you want more regular updates.

Life is good, as a dear friend liked to say often.

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