BP: 12:36pm left arm: 81/53(78) right arm: 102/72 (80)

Well, I guess the good news — my blood pressure isn’t getting any worse. The bad news — it doesn’t seem to be getting much better, at least in the mornings anyway.

Lately I’ve been taking my BP after a long period of sleep, which is usually different times of day, because my sleep schedule is erratic. Then I take it again throughout the day.

The good news yesterday, is that my blood pressure was completely normal around 7:30pm. Both arms were almost exactly the same too. That’s the first time it’s been completely normal in a few days, that’s definitely progress.

Now, it might be back to abnormal because I’ve missed a bunch of doses of my medications while I was sleeping…by 7:30pm last night, I had compliance for a number of hours, and I’d even taken some herbs. This morning when I woke up, it had been a long period of sleep…almost 13 hours — that’s a lot of doses to miss.

(Getting all of your medications on a regimented schedule is the main thing that’s good about being in the hospital when you’re really sick versus being at home. At home, it’s almost impossible to have true compliance, because when you’re really sick it’s hard to wake up when you’re super tired just to dose yourself up…especially if you’re like me, and have problems falling asleep and staying asleep in general when you’re really sick. Nobody wants to be disturbed, for anything.)

In theory, a few hours of missing doses shouldn’t be enough to effect blood pressure, but when I’m really sick I’ve noticed it can…

But the fact that my blood pressure is at least stable with the medication regime I’m on now—it’s not getting worse—that’s enough to convince me to stay in the path I’m on and see how this plays out over the next few days.

Since Actino is a slow growing bacteria, it just might take a week or two of dosing myself up before things go back to normal. I just have to be patient.

(Admittedly, patience is *not* one of my strong points…being deathly ill many times throughout my life tends to bread the opposite type of personality — the here and now, life it up today type of personality — because frankly we sick people know how fragile life is and that tomorrow is not guaranteed. This type of personality isn’t born out of selfishness, it’s born out of desperation. Maybe this time there really won’t be a tomorrow?

I just wish I felt better. I’m also very aware this blood pressure problem could be completely unrelated, or maybe fungal. I have so much yeast in various parts of my body I should be rising like dough. I’m hoping the herbs will get that under control because I don’t want to take difflucan. My liver is already stressed enough.

Herbs…yesterday I dragged myself to this Chinese ‘energy’ doctor I saw a long time ago, I figure it probably won’t hurt and maybe it could help. I’ve never really been a believer in such things, but when cod liver oil dropped my cholesterol 100 points it definitely made me consider anything is possible. It’s really hard for me to go anywhere right now — I pretty much spend my mornings feeling like I’m being sucked to the ground — but I had two vital stops yesterday, the dermatologist and this herb guy.

(I knew I couldn’t see either one of them if I went into the hospital, which was another reason to stay out.)

Dematologist: he definitely didn’t like my weird leg spot, and after feeling him out I’ve decided my recent feeling really sick and blood pressure problems might be more rooted from this scab on my leg than the Actino infection. I didn’t tell him I had an immune deficiency (sometimes it confuses doctors too much and they just shut down entirely because they’re afraid to say anything cuz they don’t understand it),

so what I’ve learned to do instead is translate what they’re saying to me, to fit within how my body functions.

For example, “when did you have this cut out of your leg? Over a month ago? It’s very red around the edges but the redness isn’t spreading too far from the center. If it was infected, I would expect more redness, pus and swelling.”

What I translate in my mind — since I don’t get redness or swelling or pus even when I do have an infection, so the fact there is redness at all is a cause for concern for me —

So I think to myself: ‘okay, it’s possible this is infected and that it could be causing the recent severity of symptoms’.

So what I ask:

“Doctor, *if* it was infected — and I understand you don’t feel this is — but if it was infected, what antibiotics would you recommend? IV Vanco?”

Hmph. He wasn’t sure what to make of this question, since he felt the problem wasn’t super serious, but he decided to play along. Plus I didn’t seem nervous or concerned or scared when I asked the question (which at this point I never am with a doctor — I’ve got way too many war wounds to be scared anymore.)

“Well — if it was infected — maybe IV Vanco if it was suspected staph, but most likely doxycycline.”

Bing. I already have doxycycline at home.

“What about Cipro? Would you recommend Cipro?” (I asked since I’m back on Cipro.)

Now the doctor is starting to feel a little weird playing this game with me, so he shakes his head and just blows off my Cipro question, saying again, “no, doxycycline. Definitely doxycycline.”

I could tell the doctor was now done playing this game with me. I could see all over his face I was starting to ask too many questions and he didn’t understand where the questions were coming from.

So I smiled brightly, looking so normal and healthy, “Well, thanks doctor!”

Now he was pleased that I seemed pleased. And the weird questions were officially over.

Back to business, “Just make sure to put xyz jelly over the scab (I can’t remember the name of it), it keeps bacteria out and helps with the healing process.”

“Would bactorban ointment work?”

He flashes me a look. Now I’m back to the weird questions.

Slowly, “Well…yes…bactorban ointment would work, but I don’t think you need it…”

Translated into my mind: get bactorban ointment asap. His impression that my leg wasn’t quite right, but he thought it wasn’t that bad either,

well I know why it wasn’t that bad either — my immune deficiency.

Since I’m on Meropenam, Flagyl and Cipro, I think that should cover whatever could be coming from my leg,

but if I’m not seeing significant improvements by Monday I’ll definitely call a doctor and get some IV vanco…I’ve done a lot of Vanco over the years, it hasn’t let me down yet.

And the herb guy? A bottle of mixed herbs and some hope and prayers. I guess that’s all you can expect, right? And my blood pressure was normal two hours after I took some yesterday. Maybe it will do some good…

(This was a painting on the wall of the dermatologist office. I thought it was kinda cool.)

About hopeforanswers

Some kind of rare immune deficiency, yet to be determined. A lifetime of infections without an elevated white cell blood or fever. Very grateful to be alive, very thankful for the friends who’ve supported me and for access to literally millions of dollars worth of medical care. I’m not the bubble child, I’m somewhere in between.
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