That motherf***er appeared on my right shoulder July 1, after several weeks of severe pain in that joint, to the point of thinking I needed an MRI for a torn glenohumeral joint or rotator cuff and actually buying a shoulder brace. While on double antibiotics.
I’m guessing I can save $$$ ditching the MRI.
The antibiotics, after 6 weeks, don’t seem to be working.
The shooting-electric-zapper pains I remember oh so well from 22 years ago, started in my RIGHT knee that day too, but they only lasted about a half-hour and haven’t returned. Yet.
Finding a Lyme-Literate MD (LLMD) in this state is like breaking into Fort Knox. One independent LLMD won’t take insurance, charges $650 up front for the first visit, $200 each after that, and has no openings till DECEMBER. Good thing I can’t afford her.
The big mucky-muck expert-hospital Lyme Disease Center said I need a referral from my PCP. I got one faxed to them. Upon calling the next day, now they said, “Oh, you need to have them send more than just a referral, all your Lyme related records need to be faxed over, it takes 48 hours for us to even get the fax, and then we’ll review it to see if we’ll take you on as a patient and that can take 2 to 4 weeks.”
I found some LLMD’s at another hospital chain. They said, “Oh, those doctors only treat you if you’re an inpatient.” Thanks, but if I’m that sick ever again from Lyme, I think being admitted to the hospital is the last thing, literally, I’d ever get to do.
Do you think if I flew down to Tijuana and walked across our nonexistent border, I’d get faster and better medical care? And for free??
I haven’t been tested for Lyme in 19 years. To test me now, to “prove” I have it now, is useless, as I was reinfected mid-February 2023, and again January 2024, and now again May 2024. (Told you I was a tick magnet) So which infection’s antibodies will next week’s tests show, hmmm?
Duck-Duck-Go’ing for telehealth LLMD’s, I found that that big mucky-muck expert-hospital actually has an “urgent appointment hotline if you have an active rash” to be seen quickly to evaluate the rash! Well! I called the number, it went right to voicemail. Two days in a row. Maybe that lovely service is no longer real, but they still have the offer up online, to make it look like they care, at least.
Second visit with my PCP is Wednesday. Bringing my Lyme symptoms diary and the phone photos of the 2 rashes. Stopped the double antibiotics Monday, in anticipation of getting tested, in case the antibiotics essentially make the test negative. And as a result, the pain, stiffness and swelling started up in more areas than my left knee and right shoulder.
Trying to tamp down my fear of this getting out of control like it did 22 years ago, for 7 years. Got lotta prayers coming my way, doing lots myself. Can’t —or won’t— do Rocephin again. It didn’t do squat the first time except destroy my gallbladder. And a little spelunking finds PubMed summaries of Rocephin causing 152 cases of “life-threatening conditions with serious Central Nervous System Adverse Drug Reactions” at least in France from 1995 to 2017 (and I was on it in 2002 though not in France), like convulsions, encephalopathy, status seizures, myoclonia. Oh, and death: 12 deaths. Other PubMed published studies found acute kidney injury in children, liver injury in a 77-year-old woman, “fatal drug-induced immune hemolytic anemia” and potentially fatal thrombocytopenia (disease of low blood platelet counts). I know these are just 5 citations; but thanks, docs, BeenThereDoneThat: you can keep your poison.
So much research to do, to see if there are other antibiotics-combos that work that I haven’t tried. And I’m allergic to penicillin.
Asking the good Lord if this is His will, and I know by now He has a good reason for it, if so. He is in charge, of me, of all of us, of all of this. He knows how it’s all gonna go down. He knows what’s coming down the pike, for all of us. Even with our free will. Maybe it’s meant that I get so ill again, like 22 years ago, that I can no longer work and must survive on Social Security. I was 3 days away from being homeless and living in my car, 16 years ago. I’ve lived on PB&J’s and slept in multiple hoodies in my multi-blanketed bed in winter before. I just don’t know what will happen, but He does. He got me through it last time. I trust He will this time too.
And I know that even though I’m forgiven of my abortion and my other sins, I also know that I still, after I die, must be purified of the figurative stain of my sins. We can be forgiven, but we still have a price, a punishment, to make amends, to make reparations, to repair what’s unclean about us.
Yes, I know, Jesus died on the cross but it’s still us who have to go and "wash our robes and make them white [i.e., clean] in the Blood of the Lamb" that He is. The cold, hard truth is we still need to be purified to enter the final Kingdom of God.
Can we get purified this side, or just that side, of this life? That side of life, is what the state of Purgatory is all about.
Didn’t C.S. Lewis write about it?
“Our souls demand Purgatory, don’t they? Would it not break the heart if God said to us, ‘It is true, my son, that your breath smells and your rags drop with mud and slime, but we are charitable here and no one will upbraid you with these things, nor draw away from you. Enter into the joy.’? Should we not reply, ‘With submission, sir, and if there is no objection, I’d rather be cleaned first.’ ‘It may hurt, you know.’— ‘Even so, sir.’
“I assume that the process of purification will normally involve suffering. Partly from tradition; partly because most real good that has been done me in this life has involved it.” (Letters to Malcolm, Letter XX)
And Fr. Ed Meeks called Purgatory “Heaven’s Mudroom.” Below is Part 1, here’s the link to Part 2.
There, we take off the muddy, dirty boots, outer coats, yucky clothes, as we don’t want to dishonor God, we want to —nay, we must— become perfect to honor Him and all that He’s done for us and to even stand in His presence.
And here’s a fact I didn’t know till recently: EVERYONE who makes it into the state of Purgatory, also makes it into Paradise, into Heaven. Everyone!
But what if my sufferings, Lyme or otherwise, help me do some purifying, this side? What about those suffering from true life-threatening disease, like cancer? Many saints believed that and lived that. It’s what that ancient and/or medieval thing about “mortification” was about. Fasting, doing without stuff, without comforts.
If I’m to suffer again like I did back then, why not chalk it up to shortening up my time getting purified in the state of Purgatory? And even more importantly, if Christ bore His sufferings on my account, what makes me any better than Him, that I shouldn’t bear my sufferings for Him?
Am I better than Saint Paul, who wrote:
“Now I rejoice in my sufferings for your sake, and in my flesh I am filling up what is lacking* in the afflictions of Christ on behalf of his body, which is the church…”
It isn’t that the Wounds of Christ are actually lacking. Bible scholars think it could refer to * “the apocalyptic concept of a quota of ‘messianic woes’ to be endured before the end comes.”
Chronic, advanced Lyme disease really does suck, I’m not gonna lie, and if I get that ill again, well, my “good days” will be few and far between. But I don’t think it’s a death sentence. I know 4 people with serious cancer, aged 10 through 75. Please, pray for them, before you pray for me.
I’m still gonna try like heck to get decent healthcare, but not if it costs me more than I can pay for, and not to be another in-the-dark guinea pig. And certainly not to follow what the FDA or CDC gaslight to me is “science.”
But barring that success, let it be like St. Paul’s “thorn in the flesh” that he asked the Lord 3 times to take away from him, but the Lord did not. Go check out the Lord’s actual answer.
And following this, I’ll post today also my own Rachel’s Vineyard retreat letter to my unborn daughter.