Three Months Later

 Just an update to indicate that the vaccine related acute hepatitis seems to be resolving itself; however my LFTs aren't going all the way back down to what was "my" normal. Follow up with the liver specialist was at the beginning of October, and things seem to be trending back to normal. 

He came to the same conclusion I did that it was the vaccine, because had it been my supplements or my Rx meds, I would have had this issue long before now. He chided me and said, "When the time comes for your booster, don't hesitate. Better for you to possibly endure another round of acute hepatitis than for you to potentially get sick with COVID. 

Needless to say, I didn't need any convincing.

I was debating putting this next detail on the Dysfunction Junction blog, as it's related to mom, but it's also related to my mental well being, so I'm going to peck it out here (as if anyone except myself reads my blog).

There are a LOT of things I am stuck with in the aftermath of mom dying. Lots of unpleasant memories, unpleasant emotions about those memories, a lot of unresolved shit. 

I'm at the stage of my grieving process to view mom dying as the final, unending abandonment after a half century of feeling as if she emotionally abandoned me, not to mention rejected me or my efforts or my feelings or concerns. I'm also at the point of gaslighting myself, doubting my own memories, doubting my own certainty that what I lived with and lived through was in fact REAL and not a string of cognitive distortions and negativity bias. 

All this on top of this COVID pandemic, which has YET to end, and the pandemic has brought a lot of other things to the surface, things which I thought I worked past and grew out of, things like feeling insecure, unsafe, and vulnerable. I am pretty sure just beneath the surface of all the other things I am feeling these days (outrage, disgust, and disappointment), I'm also sure feeling insecure, unsafe, and vulnerable are right under the surface.

Unlike my dad, who has made his presence known or felt to me after he died, my mom seems to be MIA. I had a glimmer of a feeling she came to me and said she was sorry she had to leave, but it was just a glimmer, a whisper. 

I don't believe in heaven, and actually the idea of being reunited with people who abused me, and who didn't keep me safe, and who didn't give me a foundation of self worth and self esteem, it terrifies me. Thinking of a black void of nothingness is better than an eternity of further torment. Unless, of course, eternity means we are reunited with our loved ones, healed and whole by some greater universal source or power.

Today on my way from my car to my office building, I got it in my head that the only way I am going to hear the things mom should have said to me is for me to say those things to myself. Perhaps I'll have to say these things repeatedly until I manage to undo all the entrenched neural shit that's programmed in my brain & consciousness.

I started by saying my formal first name, and:

I'm sorry I hurt you.
I'm sorry I did not know how cruel I was.
I'm sorry I did not do more to keep you safe.
I'm sorry I did not believe you.
I'm sorry I sided with others.
I'm sorry I shamed you.
I'm sorry I demanded more from you than I was willing to give in return.
I'm sorry I interfered with your relationships.
I'm sorry I did to you what my father did to me.
I'm sorry I did not show you I valued you.
I'm sorry I did not do more to take care of myself.
I'm sorry I expected you to make me happy.
I'm sorry I was jealous of you.
I'm sorry for every hateful word I said to you.
I'm sorry for every hateful thing I said ABOUT you to others.
I'm sorry I had to leave so quick.
I'm sorry our last good bye was just a regular ol' goodbye, and not something more profound.

As conflicted as our relationship was, she was still my mother. I always said I had normal impulses for someone who wasn't always "normal." But she was my mother. I understood how or why she was the way she was; what I did not understand was how or why she didn't do more to improve things, for herself, for me, for our relationship. 

And, well, she was my mother, and I want to believe that mothers know the true nature of their children. And even if I didn't always feel it or believe it at the time, my mother understood me, too. 

(Yet another blog post which concludes with me sobbing at my desk at work.)

Cautiously Optimistic

Consultation with the liver specialist was 7/2/2021, and it was more optimistic than I anticipated. He reassured me the biopsy results were quite good, and given that I had blood work done at the end of March and we're using that as our baseline, it is plausible that my illness was brought on by the vaccine.

The specialist drew more blood to be tested, to see how my liver enzymes etc are now that it's two months later. He also was having me tested for the COVID19 antibody, to see if I have been exposed to it at any point.

So far, the liver enzymes ARE improving. Contrast & compare is thus:

December 2019:
Sed Rate: 11
C-Reactive Protein: 1.8
GFR: 101

Note: Sed Rate & CRP values are on the high side of what is my normal and are still great numbers. Using December 2019's figures as I cannot locate the March figures.

March 24th:
Total bilirubin: 1.1
Alkaline Phosphate: 79
ALT: 28
AST: 23
Anion Gap: 16 

Note: First shot of Pfizer was 4/28, and 5 days after, I started feeling very unwell.

May 11th:
Sed Rate: 42
C-Reactive Protein: 11.6
GFR: 85
Total Bilirubin: .08
Alkaline Phosphate: 96
ALT: 161
AST: 88
Anion Gap: 18

Note: When I first saw my liver enzyme, CRP & Sed Rate results, I was terrified of WTF was going on with my liver--and here I am, two months later, hoping everything normalizes.

July 2nd:
Total Bilirubin: 1.2
Direct Bilirubin: 0.3
Alkaline Phosphate: 78
ALT: 41
AST: 32

Note: Not all blood test results are back yet, but looks like my liver enzymes are normalizing, though my bilirubin levels are still off--and I'm still waiting for CRP and Sed Rate, assuming the specialist ran those too.  

It looks like time is the best medicine for me. We haven't done anything different--though I have discontinued the Alpha Lipoic Acid Dr. F., had me on as it looks like it interacts with 9 other supplements, and I've decided to put more space between when I take CoQ10 and other supplements during the day as that one might be problematic too. 

No recommendations to change my Rx meds, though the specialist suggested I get off my remaining supplements (of which I am reluctant to do so). I have had remarkably good results from my n-acetylcysteine, glutathione, and taurine, and magnesium-taurate, which I am taking for several different issues. And since no MD wants to write me a Rx for Xanax, I am remaining on the taurine, as it has been helping my anxiety issues (and hypertension), and every article I've read on PubMed supports my continuing to take these supplements, as they are beneficial for the liver. I *have* pared down what I take. 

So here I sit, waiting for more results to hit the patient portal. And next month I have an annual physical appointment scheduled, so I'll have even more data to analyze from that.

Follow up with the specialist is October 5th, so no great rush to return to his office in the meantime. I was told if I wanted a glass of wine, I can, just don't over-do things. 

Oh--and I've managed not only to lose 16 of the 18 pandemic pounds I gained, but my nausea has disappeared and my appetite has returned, and I've been able to maintain the weight loss, which leaves me at only 2 pounds over my normal, pre-pandemic weight. All this aside, I'm struggling with depression, but lack the luxury to curl up in the fetal position 24/7, so I have to be high functioning (but miserable).

Do I dare be optimistic about next month's annual physical?

Desperately Seeking The Elusive Dopamine Blast

I never thought of my zigging and zagging as my attempts to break free of this "learned helplessness" which I developed as a trauma response from the emotional and verbal abuse from mom (as well as HER father), but perhaps that's what this is. 

Sadly, the learned helplessness also is a big hurdle at work. I got my annual evaluation last week, and I got a 3 (out of 5), which is "adequate" but the negative narrative in my head tells me it's "mediocre." 

God damn it, if volunteering to come into the office as part of a skeleton crew during the shut down due to the global fucking pandemic is not enough to warrant a 4, then nothing I will ever do will warrant a 4.  OOH, and I was told I need to collaborate more. 

Obviously, the person rating me doesn't give two fucks that I'm an introvert--ALSO it's a pretty big insult to suggest I don't know how to collaborate after I've been here 19 years. As if the entirety of my tenure has been some act of charity. Anyway. Yeah. Learned helplessness is a thing I've been struggling with all my life, and only in the last few years have I come to discover IT IS A THING that exists, and I'm not a weirdo. 

Maybe I need to revisit CBT for this. And yet part of me (here's the learned helplessness kicks in again) doesn't want to start ALL OVER AGAIN with a new therapist. Why bother? I'm over a half century old and these neural pathways are deeply entrenched, and I don't know if I have the fortitude anymore to fight it anymore. This is where I worry that this is the start of the "slide into oblivion" path mom took.

All my life, to include the 19 years I have been in this dead-end job, I have been made to feel as an outsider looking in, as well as feeling as if I were a fish who is told they are a failure because they can't climb a tree. 

As of today, it's 445 days until I hit my 20 year mark. I need to contact the pension office to find out how much longer I need to continue working to make up for a voluntary furlough I took 10 years ago to tend to medical issues.

Regarding the DOPAMINE in the title:

Back in the "Beforetimes," when I'd have to go to NYC for medical appointments (thereby necessitating taking a day off from work), I'd bang out 2-3 appointments (December 2019, I even managed FOUR appointments), and to sweeten the pot, I'd plan little rewards during the day to reward me (i.e. Dopamine blast) for being an adult and getting shit done.

To say I am depressed right now is an enormous understatement.

Monday's Dopamine Hit: I ran to Shop Rite to pick up some pork roll (aka The State Meat of New Jersey), as no other stores seemed to carry it. I have been dying for a "taste from home" and for me, pork roll is one of those things of which I am nostalgic. I also bought a box of ice cream pops to put in the freezer at work. I even shared the pops with a new co-worker here (whose name is ANN, btw). We both enjoyed the ice cream.

Tuesday's Dopamine Hit: I ate a pork roll, egg, and cheese sammy made with a toasted day old croissant. This was to be my 2 p.m. food intake. I ate it at 11 a.m., thereby getting my dopamine blast up front and the rest of the day just dragged.

Today's Dopamine Hit: I went to the farmer's market here in the city where my office is (farmer's market is only on Wednesdays). I bought some nectarines, grape tomatoes, an enormous multigrain baguette, smaller onion roll type bread for a sub style sammy for tomorrow, and a cup of iced coffee.

I am seeing a trend for this week that I am so depressed, I am gobbling up the dopamine hits early in the day, I guess as an attempt at propelling me forward to get through the day.

I'm sitting at my desk here, 10:11 a.m. I arrived at 9:30 a.m., and I'm stifling the overwhelming urge to just sob, yet again.

The Upper Endoscopy & Limbo

June 14th, I underwent an upper endoscopy to inspect my gastric pouch/stomach for any changes or damages after my gastric bypass from 10 years ago.

I am glad to report, the entire endoscopy went without any negative comment (other than being made to wait an hour beyond my scheduled appointment). The anesthesiologist was able to get the IV in my arm on the first try, no difficulty. I'm tired of mediocre phlebotomists leading me to believe there's something defective with my veins because they fail to get the IV in my arm. I made a point of thanking the anesthesiologist after the fact.

The biopsy from the endoscopy was delightfully boring. Nothing to see here (for once!).

The gastro recommended I schedule an appointment with a liver specialist at Columbia (as he, too, is with Columbia); however, I refuse to go into NYC any time soon (as I don't think it's necessarily safe), and the specialist has an office near me; however, the next appointment is for 8/28. 

Not wanting to wait until 8/28, I took it upon myself to find a liver specialist at a local hospital where I'm an established patient, and made an appointment with the Director of Clinical Hepatology for a consultation regarding the biopsy. That appt is set for 7/2. 

In the meantime, I've pared back my supplements, and have discontinued my alpha lipoic acid, zinc, and CoQ10, as they all might have been playing a part in the liver issue. 

In the meantime, I have to continue taking my two Rxs as my kidney guy says the hepatologist will be the one to determine whether I need to discontinue/change my two meds. 

In the meantime, I am anxious, depressed, full of rage, and tossing around the idea of finding a therapist to help me work through all the learned helplessness I developed as a trauma response with my mom (and others), as I have also identified I have issues with learned helplessness at work. And yet, the thought of starting over again with yet another therapist makes me recoil at the thought.

The Biopsy: The Procedure Itself

To preface everything I'm about to share, we found out six days ago that my husband needs to find another job. He has a grace period, but the writing isn't on the wall, he got the news direct from his boss' mouth. 

Nothing quite like a new crisis to take your mind off a not-so-new crisis, eh?

My biopsy was at Columbia, which has an interventional radiology department nearby, so at least I didn't have to stress about going into NYC for this.

Everyone was pleasant, professional, helpful, and even compassionate, with one exception. Although, in hindsight, I have very critical thoughts about the RN. He had pretty much two jobs: get an IV in my arm so I can be sedated, and monitor my blood pressure. 

Not only did he fail to get the IV in my arm, thereby damning me to endure a very painful liver biopsy without sedation; he also let it slip in conversation that he has not been vaccinated against COVID. The more I think of this in hindsight, the angrier this makes me as despite being fully vaccinated myself, I had to endure a painful COVID swab before the biopsy. I am a huge proponent of informed consent, and I should have been informed in advance if anyone involved in my biopsy was vaccinated or not.

I woke up with an allergy attack and considered taking a benedryl, but didn't because I had to be NPO since midnight. I should have taken the Benedryl. It might have helped calm my nerves a little bit. I was already terrified of the procedure--and even more terrified of whatever the results would be, as a liver biopsy isn't like an FNA, it's more involved than an FNA, and has a lot of risks too. 

The xray tech had nothing to do as the doc was using an ultrasound to guide the biopsy needle, and he certainly distracted me the entire time with talk about food in the area. 

I anticipated that I'd feel nothing more than pressure; however, I *did* feel the painful jab each of the three times the needle punched down into my liver to grab a sample. It was far more painful than I anticipated.

By the time the radiologist said he was done, I laid there on the table having a panic attack in the form of silently weeping into my mask. My glasses fogged up. I was in pain, and anxiety, and worry for my husband, and it all became so much for me. Perhaps some relief that it was over was mixed in there, but that little micron of relief was washed out by the fear and worry. 

As my glasses fogged up, the nurse noticed, and he took my glasses off, as the xray tech dabbed away my tears.

There are little side stories, sweet stories, I could share about everyone involved--even the receptionist at the front desk came back to me when I was in recovery to see how I made out. Everyone at this facility truly exude caring. They all knew how anxious I was. And as unpleasant as the procedure was, they all did their level best (well maybe NOT the nurse--he should have been able to get an IV in my arm!), to make the process as pleasant as possible.

Results could come in about 3-5 days. Three days brings us to Friday--and that might be over optimistic to expect. Five days is Sunday. And Monday I go to the gastroenterologist for an upper endoscopy--and yet another IV sedation. Given I had a colonoscopy by this doctor 3 years ago and did not have an issue with either an IV or sedation, I am hoping for the same result--I don't know how much more jabbing my arms can withstand at this point.

So what will the results be? NAFLD? NASH? AIH? Honestly, I don't know what to hope for. I did have hopes that the liver fibrosity test was a false negative, or perhaps I have scar tissue from my gall bladder removal. I honestly don't know what to expect.

And just like she did 10 years ago when I went through my bypass, my sister proved to me that she just doesn't have enough give-a-fuck to offer anything in the way of substantive emotional support while I go through all this. She made some comment two weeks ago via text how she thinks I am driving myself crazy with this. Needless to say, I never let her know about having to go in for a liver biopsy. And I sure-as-shit am not telling her about the precariousness of the husband's job situation at the moment.

I am emotional "just enough" at the moment to allow myself to believe all this shit has manifested because of jealousy--the evil eye. Mom was jealous of me most of my life, her sister was jealous of me too. Same thing goes for my sister, as well as my now-former friend, JabippyLoo. Truly, it takes a village to cast an evil eye on me and the husband. 

I am used to shitty things happening to me; however, it's another thing entirely to see the husband get the wind knocked out of his sails. I remember all too well what it was like going through perhaps the worst time in my life 23 years ago--and do it relatively alone. Sure, my parents were alive then, but offered little in the way of help, other than mom basically selling me into indentured servitude to convince her cousin to let me live in her house FOR RENT by the way.

I am providing the husband as best of advice as I can, to help him navigate himself away from this. To see his confidence take such a brutal hit, it's been difficult for me to watch. Helping him navigate things also takes my mind off my own situation, albeit temporarily. 

Anyway. Yeah. It's been a rough couple of days. And tomorrow I am going to be subjected to the always-ego-crushing annual evaluation at work. 

To be direct, I just don't know how much longer I can keep "doing this," with "this" being work, or deal with the never-ending-stream of doctors. 

Whatever the results from the biopsy, one thing is very clear: the next doctor I see will be a liver specialist.

I just don't have it in me.

Prepping for the Biopsy

Things feel so grim right now. I admit I require a lot more certainty than most people. I freely admit I feel ill-equipped to handle whatever the next week or two holds for me. 

This morning (while working from home) I finally used the bottle of hair dye I bought at the start of the pandemic. A year ago I stocked up on all the obvious essentials, plus a 10 pack of sympathy cards and a bottle of hair dye. The sympathy cards were all long gone by year end. And today I finally used the hair dye. 

I have felt overwhelmed by the pandemic, and of course mom dying, and barely had a chance to fully process the gravity of it all, before I learned at the end of April the name of the kidney disease I have been monitored for by my nephrologist. And before I can process THAT, I am now in the midst of a medical mystery, trying to find out what has caused my liver fibrosis. 

My sister, I have come to discover, yet again (first time was after my bypass 10 years ago) that she is incapable of empathy or give-a-fuck, so as unpleasant as that is, it is useful to me to know from where to expect my support. 

So, today is the day I go for a COVID test, which is required in preparation for my liver biopsy, which is 5 days away. 

Usually I reward myself after doing something I really don’t want to do; however, I dyed my hair before showering, and I HAD to shower because the last time I showered was Monday, and I am a depressed weirdo who believes showering is part of the social contract if you are going to be up close and personal with anyone. 

24 more minutes until I check in. I guess I better get dressed and out the door. 

It is difficult to remain optimistic: Another Set Back

So, the hematology thing pretty much did not provide any insights into the elevated RBC, hematocrit, and hemaglobin. I'm neither anemic nor do I have thessalemia minor as my former rheumatologist suspected. I came away from that entire experience (all two whopping months of it), with a new kidney diagnosis: renal parenchymal disease, which my nephrologist assures me doesn't change anything about my care plan etc. And I barely was able to take a breath and process this news, when the next new crisis presented itself.

As I might have indicated, or not, who knows, I'm so scattered these days, I've been sick. 

First, we spent a few days at Lake George, isolating in a cabin on the lake for a few days. We returned home on 4/16. On 4/17, I started to spike a fever which lasted four days. 

By day three, I had a COVID test, which came back negative. And my fever seemed to resolve on its own.

Eleven days (from the date of onset of the fever), I had my first shot of the Pfizer vaccination. 

Five days after the first shot, I started getting a wave of symptoms that seemed to intensify each day: brain fog, lethargy, nausea, diarrhea, and diffuse pain all throughout my abdomen.

By day three of the wave of symptoms, I had a video appointment with a doctor who NOT KNOWING A GOD DAMNED THING ABOUT ME, pretty much told me to power through, I suppose he thought I was dealing with food poisoning? I don't know. 

By day five of the wave of symptoms, I remembered I have a gastroenterologist, and I scheduled an appointment with him--which sadly was 10 days from that day.

5/11/21 I had the first appointment and the first round of blood tests were done. My liver enzymes were (for me) crazy high, same thing about my ESR and C-RP, and my GFR seemed to drop 10 points (according to my records I keep). Of course all this terrified me.

5/14/21 I went back in for round two of blood tests. A full pathogen panel was done, I was tested for HepA, HepB, HepC, Celiac, and a couple other tests for my liver and kidney. I would get messages throughout the day when the test results would hit the patient portal--and my gastroenterologist would make a note everything was normal.

5/21/21 I endured a CT scan with contrast, which with a couple minor comments, came back normal. It clearly said my liver was normal.

Between the test results coming back normal and the CT scan being normal, I started to dare to be uncharacteristically optimistic--that is, until yesterday when the results of the Fibrospect HCV test came back, and IMHO the results were alarming--the test indicates severe liver fibrosis.

I enjoy a glass of wine or even a cocktail from time to time, maybe 1-2 a week? If that? And then I could go weeks without a drink. And full disclosure, while we were away, I had a drink a day because "hey! I'm on vacation!"

Mind you, after my gastric bypass, all my liver enzymes and triglyceride levels were normal, and I had assurances that my fatty liver syndrome had reversed itself; however, not at any point in time did my ReproEndoGuy ever refer me out to a liver specialist--even after I tested positive for carrying the gene for Factor Five Leiden Mutation. I trusted everything was fine, and furthermore, I was never told to avoid alcohol entirely.

In the interim while all the tests were coming in to the patient portal piecemeal, I kept beating myself up, "Did I bring this on myself? Did I injure myself?" And then the Fibrospect HCV test came back, and I didn't know how to interpret it as it typically is a test for HepC patients to monitor their liver fibrosis. Despite my HepC results coming back negative, and not knowing what Fibrospect HCV was, I worried, "Do I have HepC?" And then I worried about if my husband now has HepC. 

5/26/21 Was the day I received the Fibrospect HCV results, and it also was the day of my follow up with my gastroenterologist (who, I might add, I wish were my internist as he is incredibly thorough). 

So I went to the appointment armed with page of questions typed up to make our appointment as efficient as possible--especially considering this doctor ALWAYS makes me (and everyone else) wait an hour or more, as his staff always seems to overbook him. 

I handed him his copy of the questions and one by one we went over the questions, and I annotated my printed copy of the questions.

As the questions went on, at one point he stopped me and said, "You DO know none of this is your fault, right?" And with that I started to cry. I said, "I can't even be relieved by that--I am now instantaneously ANGRY about it."

In 2011, I had a gastric bypass to lower my risks for diabetes and fatty liver. The threat of diabetes is now a thing of the past; however, this non alcoholic fatty liver disease was there lurking beneath the surface all this time. 

Who knows how long it has been there, silently damaging my liver? Was it from age 30 (when I was diagnosed with PCOS) until age 44 (when I finally had my bypass)? I'm now 52, so has it been 22 years it has been lurking under the radar and not one person saw fit to test me for liver fibrosis? Why bother doing a CT scan when, CLEARLY, the scan isn't refined enough to detect fibrosis? Why not an MRI?

I am sitting at my desk in my office typing this out and trying not to sob about the pointlessness of all of it: Seeing that fancy endocrinologist for my PCOS 4x a year for 14 years (not to mention the thousands of dollars spent)? Having my bypass? Trying to take care of myself (though granted I am not a health nut by any stretch of the definition). 

What is the point of all this vigilance if, in the end, my body will do what it will do? Even my bypass has failed me. I've maintained a 60 lb weight loss. The bypass failed me and I have failed my bypass. 

Perhaps the liver situation has been driving the elevated RBC, hematocrit, and hemaglobin. Perhaps this is why I am fatigued all the time. Even when I wake up after being compliant using my CPAP, I am listless and have no energy. Why should I bother anymore?

So. The plan:

6/14/21 I will undergo an upper endoscopy to see if there's any damage from after my bypass, which might be driving some of the abdominal pain--though some of the pain could be from adhesions from the surgery.

Thereafter, at some point, I will have to go to NYC for a liver biopsy--and the thought of this terrifies and angers me. 

I ended my day yesterday sobbing just thinking about what the hell is going on, and I started my day today with Maharajah saying to me, "Where the hell is Dr. F., when we need him?" And I started to sob selfishly that Dr. F., passed away in February of this year. I just dare to hope that the 14 years of being a patient, and in a way A STUDENT of his, learning about all these issues I have, has prepared me for whatever comes next.

I am scared.

I am back where I started

 So two months of tests and appointments with the hematologist, as well as a renal ultrasound, I am back where I started: I still feel like garbage, lethargic, depressed, and still have this weirdness with my RBC, HCT, HGB. Sadly, from a blood standpoint, no new discoveries were made.

Then I received a "notice of adverse determination" from the insurance company regarding a full panel of genetic tests run--to the tune of $18,000--and the insurance isn't paying.

So imagine my dread and fear of feeling physically awful being compounded by the possibility of having to pay an $18,000 lab fee. 

Despite the fact that I do not have the energy or capacity to deal with dipshits these days, first call I made was the insurance company, in case I needed to start the appeals process. They then referred me back to the hematologist, who was going to suggest I call the lab directly; however, they were super helpful and reached out to the lab on my behalf. The lab called me back, even more helpful than the hematologist's office, and reassured me that I will not end up being responsible for this, that they deal with this all the time, and they even gave me their name and telephone number, so in case I get any other notice about this, they will handle it. 

So, YAY, right?

Well, my last phone call with the hematologist was unsettling. She proceeds to tell me about some remark on the renal ultrasound (which did not show up anything which might play into my RBC, HCT, HGB issue), and she kept saying "perincable." And as best as I could Google, I could not find anything. She kept saying PERINCABLE. It was too much for me to even process, I didn't ask her how to spell it; I waited until later and asked her nurse to scan it as a PDF and email it to me. The new word in my vocabulary now is "parenchymal." She so very casually said "renal parenchymal disease." I've gone some preliminary readings on the topic, and my heart has sunk.

At the time of the ultrasound, I signed a release so a copy of the report would be released to me (I still have not received it), and a copy to be provided to my nephrologist, and I can only assume he never received it. So yesterday, I emailed the PDF to him.

I normally keep my phone on DO NOT DISTURB, so as to keep the telemarketers away; however, I've kept it turned off on the off chance the kidney guy wants to call me and discuss what exactly this new information MEANS--and/or whether it changes anything.

Right now, I'm a practical woman. I've known I had glomerulonephritis, but no other diagnosis to accompany it. I've long suspected what killed my dad was CKD, as mitral valve prolapse is a byproduct of that--and in the end, what killed him was pulmonary and renal failure. I have seen what end stage renal failure looks like. It's terrifying and painful. Dad wasn't on dialysis, though.

So now I'm wondering if that glass of wine I had during lunch before the ultrasound impacted the results all that much. Wondering also if I am going to have to stop drinking entirely--not that it's a lot. There are weeks I go completely without, and then I can go on vacation and lose a bit of control as I did a couple weeks back--and now my energy levels are worse than they've been in a while. 

My proteinuria has improved. My GFR is quite good (for someone my age, and for someone who doesn't have kidney disease). But I wonder how long I'll be in this holding pattern.

To Do List Revisited, 3/29/21 Hematology + Physiatry + A Setback

So, it's been about 12 days since my last update regarding my To Do List items, and I have already gotten the ball rolling. 

3/22/21 was a visit with my physiatrist, after a year of putting all things muskuloskeletal on hold due to the pandemic--hard to believe her baby is now over a year old. Issues addressed and a preliminary pain plan has been set up. At the end of this week, I go in for an MRI. After that, we will do a cortisone shot in my hip, which I believe is just for diagnostic purposes. And after that, I am biting the bullet and paying out of pocket for a PRP injection in the hip. It'll be unpleasant, my doc sufficiently warned me; however, speaking of unpleasant--I haven't been able to sleep on my right side since 2012 after sleeping on an aryuvedic bed which was so hard, sleeping on a concrete slab probably would have been more comfortable.

3/24/21 was a visit with a new hematologist. I did my due diligence to find someone capable and close to home, in case I needed treatments or infusions. After making me wait close to an hour after arrival, and a weigh in, my first question to the hematologist was, "You aren't planning on retiring anytime soon are you?" The grimace on her face told me everything I needed to know. Her first words were, "No one told you I was leaving here mid-May, when you made your appointment?" 

Even though my hopes were dashed of establishing a rapport with this doctor, I was hell bent on getting all my current questions answered. I prattled off the timeline of when I started feeling awful in 2016 (see previous blog posts wherein I detailed that timeline). I concluded the timeline with "And here I am--and now you know why the first question I asked was whether you'd be sticking around for a while."

I did my due diligence and provided her with about 40 PDFs of all related blood work, and hope that she can compare whatever new labs she ordered against the old.

 

I informed her that after the labs my nephrologist ran on 3/10, I stopped taking my iron supplement on 3/11 when I realized my RBC, HCT, and HGB were still elevated and given my Factor Five Leiden Mutation I didn't want to further risk having a clot or a stroke. She confirmed my instincts were good. 

I let her know about my bariatric surgery in 2011 and my adenomyosis, and those might be what's driving the anemia (or whatever blood issue this actually IS); however, I did inquire if the kidneys could be a factor, and I mentioned something about how I don't think I've ever had my EPO/erythropoeitin levels checked. 

I then mentioned my thyroid nodules, despite having normal thyroid panels, I keep having this issue with my thyroid nodules, and I wondered could my anemia be driving the nodules, or if there were something about the thyroid that could be driving the anemia.

Blood was drawn and a urine sample provided, and a follow up is scheduled for the end of this week, and hopefully we'll have some idea of what's going on and how to proceed. 

The hematologist did mention it might be beneficial for me to have a follow up sleep study to see if my CPAP needs to be adjusted, as that might be skewing the HCT, HGB and RBC levels. So, I have to reach out to my ENT at some point about this.

So--full disclosure: After my physiatrist appointment (wherein I refused to get on the scale), I came home and weighed myself. I have been dreading this, and I knew it was going to be bad. I was ashamed that I managed to gain about 18 lbs since the start of the pandemic.  I know I'm not alone in this, as many people have gained weight due to isolating during the pandemic. The lack of activity, as well as my crazy sleep schedule (truly, it's more like a LACK of a sleep schedule!) are contributing to this. 

For well over a year, my sleep pattern continued to worsen, to the point where there were some days I was dragging my ass to bed by 2, 3, or 4 a.m. Mind you, with my reactive hypoglycemia, this also meant the longer I am awake, the more meals (no matter how mini they were) I ate. More meals + less activity + zero restorative sleep = an endless cycle.

So that was last Monday. Tuesday evening I purchased some chicken soup I love which is 160 cal a can, and I bought a bottle of Glucomannan, hoping the supplement + hot liquids will make me feel fuller longer, especially after dinner which usually is a problem for me these days. I also ordered some Magic Spoon cereal as something crunchy for a snack and a change of pace. The macros on it were very good, and I figure it could be a good inclusion in my diet.

By last Wednesday for my hematology appointment, I had managed to dump 2 lbs off. By this morning, it's now a total of 3 lbs I've dumped off in a week, just making these adjustments (and full full disclosure, I haven't really been super applying myself).

Additionally, I got serious about getting myself to bed by 12:30 each night, which I managed to do every night except Saturday and Sunday night. So tonight I'll tighten things back down and try to get to bed by 12:30 again. 

Even getting 7-8 hours of sleep a night + using my CPAP isn't making me feel any more refreshed, but at least I'm not eating, so that's a win. 

As demoralizing as the set back of gaining that weight, at least I was brave enough to get on the scale to see what the number was. Hopefully it'll be a bit easier to get back on track and dump off the remaining 15 lbs, which will bring me back to my status quo; however, once I get there, I want to try to keep at it to get my numbers back under 200. Things could have been worse. I could have continued to do the ostrich routine of denial and putting my head in the sand (like mom used to do) until things got so wildly out of control where I'd probably need another surgical intervention to get me back on track. 

I also have been trying to get back on my bike every day--eventually this habit will be re-established to the point where I won't even think about it or question it (or worse, negotiate with myself into NOT getting on the bike). This morning I was pressed for time, but I managed 15 minutes before I had to shower up and get out of the house to head to the office. 15 minutes is better than ZERO. 

Tomorrow, I'll try to do better.

To Do List Revisited, 3/17/2021

 So I'm still chipping away at my to do list, now that my medical insurance has kicked in.  

So far, I've seen my ENT, who is close to home. She then had me make an appointment to repeat my thyroid ultrasound, and given there were some changes,  she reached out to the otolarynologist who performed my biopsy in 2019, and the otolarynologist's office reached out to me to schedule the biopsy. Given I'm not vaccinated yet, I pushed it off until November, hoping by then, things will be improving (regarding the pandemic). I hope I'm not being overly optimistic.

I set an appointment with my nephrologist for 4/5 and it's a video appointment. The day after my ultrasound, I went to the lab to give blood and urine samples for my 4/5 appointment.

While sitting in my car drinking coffee with the sunroof open (this is my default "Pandemic Outing"), I decided to check the NYS COVID site to see if there were any appointments available. I've done this multiple times a day for close to 50 days, and finally there was an availability. I sat in an online queue for 20 minutes, and arranged an appointment for my first shot on 4/28. The Maharajah is too healthy, lacks any comorbidities and has to wait a bit longer until he's eligible for the vaccine, which everyone should be vaccinated by the end of May. 

The next day, my lab results were ready and after reading, I decided to just stop taking my iron supplement as my HCT, HGB, and RBC are high. I figure it can't hurt me too much by omitting this supplement for two weeks. 

The day I decided to stop taking the supplement is also the same day I reached out to a local hematologist and scheduled an appointment for 3/24 for a consultation. She is a DO, and I hope she'll also become my internist. 

My timeline has been thus:

In 2016, I stopped seeing my bariatric surgeon, as, after I complained about being depressed and lethargic, he wrote me an Rx for phentermine. Given my hypertension, I thought this was reckless. At the time, my iron panel was within normal parameters.

Later in 2016, I sought out a consultation with a hematologist in NYC, who ran a full panel of blood clotting tests and iron tests, and my iron panel was within normal parameters. (On an upnote, as a lay person, I let my mind be at ease as I was worrying my issue might be polycythemia vera--and luckily the hematologist ran a test for the JAK2 gene--and that test result was negative--so I stopped worrying about THAT. Luckily I keep thorough records of all my blood tests!)

After seeing my ReproEndoGuy 4x a year for close to 14 years, he decided to retire in December 2017, effectively having me fly without a net. This doctor knew me better than anyone, from a bio-chemical standpoint. 50+ years of clinical savvy + 14 years of visits. I worry I won't benefit from this level of care again.

2018 I sought out a rheumatologist, who ran all sorts of tests to see if I had any underlying auto-immune issues that might be causing my pain. He diagnosed me with enthesitis (which is the tendon/soft tissue issues but without having any of the test come up positive for RA etc). Iron panel was still within normal parameters.

End of 2019, my physiatrist referred me out to yet another rheumatologist, who was super thorough, and I had high hopes of several more years of being his patient; however, he retired in August 2020. He was the doctor who picked up on my iron panel being skewed, and noted "possible thessalemia minor" in his notes. A preliminary search on the topic shows that people CAN live with thessalemia minor, and it can be managed. So, that is somewhat reassuring--assuming that is even what my problem IS.

I am hoping that the iron issue is due to my gastric bypass + my adenomyosis. I am hoping that it will be a relatively easy "fix," of perhaps IV infusions to build up my iron stores, and if necessary, perhaps donating blood to lower the HCT, HGB, and RBC levels. I am hoping to feel wonderful after the infusions.

This hematologist is a DO, and I'm hoping that she won't recommend chemical blood thinners. If necessary, I'd like to stick with herbs and nutraceuticals instead. 

I should have done this last year. But 2020 was a shit year (as it was for most people), and I put everything on hold, thinking I'd get around to this eventually when the pandemic ends, and there's no end in sight (yet). And then of course, mom died, and well that's a huge distraction.

All I know is, physically and psychically I feel like hot garbage, and I'd like to change that.

Today I had a phone consultation with a life coach, and I am considering taking a 10 week program with him. He has a focus on people who want to overcome narcissistic abuse. I'm hoping I will not be spinning my wheels again.

Admittedly, I have issues with feelings of abandonment or rejection, so for me to lose my ReproEndoGuy, then the thorough rheumatologist, and my previous therapist, each of these were huge set backs and losses in my support system.

Between the new hematologist and the new life coach/therapist, I'm putting my trust in other people's hands again. I don't like the uncertainty and vulnerability I am feeling right now. 

Also, herein this blog post, I said the word "hoping" or "hope" one too many times. Hope is a dangerous thing, because if things do not play out as I'd desire, what I am left with is nothing but crushing disappointment, and sadly, it takes me too long to finally pull myself together and start all over again.

So, here I go, starting all over again. Perhaps I might be pleasantly surprised. My spin on the Tennyson quote goes thusly: "In the Spring a not-so-young Maven's fancy lightly turns to thoughts of an improved state of being."

RIP “ReproEndoGuy”

Very sad to learn that my beloved endocrinologist “The Father of  PCOS,” Walter Futterweit passed away 2/2/21. May his name & memory always be a blessing to those who knew & loved him. 

https://www.legacy.com/amp/obituaries/nytimes/197651401

He retired in 2017. In the last two years of visits,  I suspected he was sick. The last I heard from him was 2018. He had been on my mind a lot since then. His cell phone was turned off in 2018, thereabouts. Recently I was thinking of sending a card to him to reconnect. But had been checking periodically for his obit. He retired at age 86, so I knew it was an eventuality. 

It is an understatement to say he was a huge support to me. I saw him 4 times a year for close to 14 years, and was a steadfast and trusted advocate, and friend. 

Not that I am proud of this detail, but, some years I saw him more than I saw my mom. I saw him 4x a year for nearly 14 years. 

I would plan on spending the entire day in NYC, usually stacking other appointments for the day, and he would be the first appointment.

The entire experience was ritualized, certain habits like showing up very early, so I would settle down after the anxiety of mass transit and walking to the office. I’d sit and crochet in the waiting room, admire the Miro lithographs on the wall, and listen to classical music which was always  playing. I’d review my lab reports before going into his office for a discussion and then on to the exam room. (And of course pleasant chit chat with his secretary Roni, his nurse Luba, and Ricky the doorman.) 

I need a lot of predictability in my life, and for four times a year for fourteen years, Dr. F. provided that foundation for me. And to be honest, ever since he retired in 2017, I have been chasing that experience like chasing a unicorn. The depth and quality of care he provided, I am afraid to say, might never come my way again. 

During the pandemic, I have been revisiting those ritualized office visits, as they were the central part of my self care for 14 years. 

His recommendations were solid gold. He recommended the surgeon for my gastric bypass, as well as other doctors, some of whom I continue to see to this day. His legacy continues through those doctors he respected enough to recommend to me, who have also become trusted advocates for my health. 

He was the solitary reason why I am discerning about my care. He got me involved, making me an active participant in my care. 

He got me involved and educated me on how to read the lab reports for blood tests. He got me hooked on reading peer reviewed medical journals. We talked endlessly about supplements and other things related to my issues.

He was always “just an e-mail” away—my emails were always met with a timely, friendly reply and loaded with guidance. 

He truly was a wonderful person. A fantastic health advocate and educator, and friend. 

My words don’t do him justice. 

I always quipped to him how he lived his life like that old Irish proverb: If you love what you do, you will never work a day in your life. He was the personification of that. 

To Do List Revisited

So it's been about a half a year since my posted To Do List. The pandemic has really been a huge set back for me and my personal care. Not only do all the old issues still exist, but I'm convinced I've developed PTSD on top of everything else.

At the end of 2020, I finally bit the bullet and signed up for insurance through my office. For 18 years I waived coverage as the Maharajah's coverage was always so good and covered at 100% by his employer. When "The Rat" bought out his division, they foisted their shitty insurance upon us. Crappy coverage, and a plan where next to none of my providers participated, PLUS a $6200 out of network deductible to be met. I was hemhorraging cash last year. 

So I signed up, my annual contribution is $1575, with a $1250 out of network deductible, and so far from what I can see, only one of my current docs don't participate. 

This past Friday I had a hum-dinger of a melt down. Raging at the current state of political affairs. Raging about a now-former POTUS that allowed 400+K Americans die (my mom was one of them). Raging about how none of us will have any justice for the losses we incurred, loss of life, loss of a year of our lives, loss of the collective's sanity and sense of well being. Raging and despairing about it all. 

For someone like me, who has a couple of robust life traps developed in childhood, even though I can intellectualize the need for isolation from everyone else, I am still left with this intense sense of abandonment. I wish I had the cognitive dissonance to make me act and think that *all this* is nothing. I rage against everyone who acts and thinks that this is nothing more than the flu or worse, that it's a hoax. 

When I say "hum-dinger," that's code for INCONSOLABLE. Tears didn't trickle down my cheeks, they shot out of my tear ducts like hot bullets. I was so inconsolable, I spent the next two days in bed, trying to rally from it--what a romantic way to spend Valentine's Day, eh?

Today I called my insurance company to see when is the effective date of my coverage, and to verify which of my docs participate in the plan, and today I set about making two appointments. Tomorrow I'll make two more. Thursday, two more. 

The appointments I scheduled today are close to home, or video appointments. The remaining appointments will be scheduled for Veterans Day (or thereafter), and are in NYC. I hope it's not being overly optimistic thinking we'll be coming out of this mess by then. 

I did manage to hear back from my former therapist at the end of July. And I've since reconsidered the notion of going back into therapy, as I'll be starting from square one, as whatever good work I managed to accomplish has totally backslid. I cannot bear even talking about what's going on with me anymore as it's too upsetting. 

On top of everything else, and my suspicions of PTSD, I'm also going through an existential crisis, now that mom's gone. The illusion of a safety net is gone. Intellectually I know I never had one. And the reality of 2017 (year of mom's injury which resulted in her going to Shady Pines permanently--by choice) and 2020 (when she died), those three years in particular I know I had no net--but really she wasn't much of a net even before her injury. But at least she was always at the end of the phone--when her phone would cooperate, that is. 

Now that mom's gone (over nine months at this point), and my friend Susan is gone, and the Maharajah has shown me he cannot handle what I'm going through, my only outlets are my blog here, and occasionally screaming into the abyss which is Twitter--neither of these are problem solvers.

I think about how lonely mom was after dad died. 12 years of loneliness, and yet, she kept retreating further and further from everyone. And here I am feeling (many things, including) loneliness. And right this moment, I know the choice is mine, to decide how long I'll feel this way; however, at least TODAY, I made some self care appointments, and hope by doing so, it'll remind me of normal things I'd normally do during non-pandemic, normal times. Fake it to make it, I guess. Maybe five more months of this?

Things Tentatively On My To Do List

Even though here in NY, things are opening up gradually, until there is a vaccination available, I'm reluctant to head into NYC for anything. Even here in the 'burbs, even though masks are required to be worn in shared public spaces like grocery stores, people are complacent and selfish, and mask wearing compliance isn't what I'd deem even remotely close to 100%.

There are many shitty things to associate with the pandemic, and exposing the true nature of other humans has been, unfortunate and quite enlightening. I hate just about everyone.

Another shitty thing is our inability to make any real plans. Vacations seem almost impractical and absurd--yet, I am so exhausted, I need a break. Making doctor appointments seems out of the realm of possibility too. If I am forced to go, I could presumably DRIVE, but I've never driven to NYC, and usually take the train. I'd have to search out parking garages or on street parking, and hope for the best. 

That all being said, for my own notes, I am crafting this to do list of potential doctors I need to see, but at this point, it might be early 2021 before it happens:

1. Kidney Guy (regular follow up appointment & vaccinations)
2. Endocrinologist (establish as a new patient; and follow up U/S for thyroid nodules)
3. Hematologist (get to the bottom of my anemia)
4. Neuro Ophthalmologist (regular follow up appointment)

I have triaged everything else. I see Mt. Sinai is opening a new office at 331 Central Park Avenue in Scarsdale, so I might check in September to see if any of the names of the doctors is familiar to me so I might save myself a trip into Manhattan.

The rheumatologist I was seeing last year is being forced into retirement, and I'm less than enthused about starting with yet another rheumatologist, when it doesn't appear as if my joint and other pains are rheumatological in nature. 

As an aside, I did mention in my previous post about how I haven't had a therapist since September 2019. I did manage to do an effective Google search to find the practice where my previous therapist ended up. I called and left a voicemail last week, and have yet to receive a response. 

Four Months Later

Two weeks after my previous post, life as we all know it, changed. 

3/10 Maharajah's office started working remotely, and a week later, my office followed suit. I volunteered to work as part of a skeleton crew. I got a couple days into it when I received the first of what would be two emails informing me that a coworker (on another floor) tested positive for COVID19. The office closed down for two weeks, they had a sanitizing crew come in and I worked another couple of days before the second email came through saying another co-worker tested positive.

Fortunately, so far, no one else has come up positive, and I have been working all this time. At first it was 2 hours a day 3 days a week; then 4 hours a day 3 days a week, then 4 hours every day, staggering mornings and afternoons every other day.

By the beginning of April, my mom was alerted that COVID19 was in the nursing home; she knew it before the official notification came through, as everyone in her wing was dying of it. One by one, each person died, by the end of March, the woman in the next room over and then the person across the hall were taken to the hospital (to die), THEN mom's roommate. She was terrified, and yet our conversations were weirdly NORMAL.

When I spoke with her, I said that I hoped when she was sick in February, that I hoped it wsan't the flu, and we both doubted it was the flu. I hoped that she had some kind of immunity--despite the fact of the abundance of comorbidities she had which would make surviving it unlikely.

It's a blur. I don't remember if my last conversation was April 17th or the 24th. The staff at the nursing home were over-burdened as people were out sick or otherwise not showing up. There were two aides to care for, then, 63 residents. Despite calling the nurse's station and trying to get help so that someone could get mom's cell phone and bring it near her so I could talk to her, that never happened. There were no final goodbyes. My last goodbye was just what I'd call an ordinary goodbye. The last time I saw her was December. 

On top of the nursing home's negligence, the "hospice" came in precisely once, I am not even sure what they did as I wasn't the medical PoA, but they came in once, and from what I can tell as a spectator, they neglected her until she died.

We were told she'd die in 3 days, and she lived 11 days, 8 days beyond their prediction. For me, it was two weeks of radio silence. Mom was no longer alert and able to make or receive phone calls. Before they sedated her with morphine and ativan, she frantic and screaming for my father who died in 2008. She was terrified. And it takes a lot of fortitude for me to type this out without sobbing in anguish.

5/4 Mom died.

5/15 she was finally cremated.
6/7 We were rushed by my sister's church as well as mom's sister to bury mom's ashes, rather than wait until the end of the summer when it might be safer to do so, so then we'd be able to comfort one another and share in the burden of grief, and perhaps share a meal as a family. But no. I was robbed of that. 

On top of my anger about how mom was neglected by Shady Pines, then the hospice, I'm angry at my aunt for rushing things according to HER schedule. She could easily have had a memorial mass at her church, no one was stopping her from doing that. Instead, we were rushed to bury the remains. There were no hugs. There were no condolences. The whole thing has been more to bear. 

There is also this lingering suspicion of what awful things she told others about me, as I am now persona-non-grata with the extended family (on mom's mom's side), as I have only heard from one cousin from that side of the family--the rest have been silent. No card. Not even a text. They've all abandoned me how they surely must think I abandoned her--it doesn't matter if she abandoned me or was otherwise emotionally unavailable and verbally abusive to me.

From a medical and self-care standpoint, I have had to triage everything. All my doctors, or the ones I will call the important ones: internist, gyno, kidney guy, cardiologist, neuro ophthalmologist are all in NYC. And NYC was hit harder than where I live 40 minutes north of NYC. All my routine check ups and appointments have been postponed indefinitely until things even out. Even as I type this right now, it looks like NY has finally leveled off. But I won't feel comfortable about going into NYC for any appointments until a vaccine has been developed.

This is also a helluva time to be "flying without a net" without a therapist. I haven't found a new therapist since Kerry went onto greener pastures last September--it also doesn't help that our insurance plan this year sucks moose balls with it's $6200 deductible that had to be met before they will cover things at 80%, assuming I find providers that are "in-network." And with mom no longer being physically here, I wonder how much more work I need to do. I can't put my finger on it, but I still need more work to be done, though at this point it's "damage control," finding healthier conflict resolution skills and coping mechanisms.

Right now, I'm just left with a tremendous amount of cognitive dissonance regarding my mom: knowing how she abused me and my siblings (and dad, too); and knowing how she was abused too, and me wanting better for her than she was willing to fight for herself.

According to my notes, April 22 was the last menstrual cycle I had, right around when the calls to/from mom stopped. Coincidentally I've stopped menstruating. My mom died. Is this when I officially become/became an adult?
 

Three Months Later

Wow! Hard to believe it's been three whole months since my last post. Plenty going on, as usual.

In December I started seeing a chiropractor who was also a functional medicine doctor, and despite the fact I started seeing him primarily for active release therapy/technique, he spent the majority of my seven sessions (the initial consultation plus six sessions) bullying me and ranting about how I refuse to go gluten free and dairy free. Mind you--there was no rapport--how does he expect me to build up any trust in him as a health care provider if all he's going to do is rant about what I'm not doing--and of course, conveniently overlook all the things I did manage to alter. My suspicion is, that his primary focus seems to be a clientele who are high performance athlete. Let's just say, I'm NOT his target clientele. After six sessions of being bullied directly (as well as being subjected to his political rants), I decided this was not a good fit for me personally.

In December I also managed to see a new rheumatologist for yet another rheumatological screening--and he was quite thorough and was testing all kinds of things, even things my previous endocrinologist (the one who retired in December 2017) would test. 

I was really impressed with how thorough he was and how easy it was for us to build up a rapport. Only problem is when I saw him in January, I was informed the hospital is trying to get him to retire (he's only in his early 70s, and not ready yet). Looks like the hospital is trying to get an infusion of young blood, and aren't all that concerned with the patients this doctor treats. I have one more appointment with him (in April) and I hope to get some kind of conclusive diagnosis--my suspicion is Ehlers Danlos Syndrome--as I have a collection of seemingly unrelated issues, yet when I connect the dots, it brings me back to EDS.  I hope when I see him, he'll suggest I get genetic testing--and whether I get that done or not will hinge directly on how much the % insurance will cover, as Maharajah's plan changed this year and it is utter garbage--I'm pretty much hemorrhaging money this year with our high deductible.

Undaunted, I found another chiropractor for the active release therapy, and I have been getting treatments weekly. This will be the sixth week, and between this and a kenalog injection I had (right into my psoas bursa), I am walking better, able to dismount from a chair better, and climb stairs better--at least the lifting of the leg, but not the "push off" movement. I am allowing myself a total of 12 visits to get everything "dealt with." Doc Handy (as I'll call him herein) is great.

Doc Handy thinks I should set up a blog regarding my affinity for diet supplements--but I don't know where to start. I am not certified in anything, whether nutraceutical or nutrition related, I only know I am my own best case study and I know what works for me and my collection of issues.

My acupuncturist thinks I should set up a YouTube channel with affiliate links for the same topic--supplements.

And my rheumatologist thinks I could do this even without any type of professional certifications.

This is clearly something I want to do for a living, as it helps me, and a bunch of my friends have sought my advice, I dispensed my advice, and it has made impacts in their lives--now that's something truly lovely--fulfillment in helping others!

If anyone reading this has any suggestions regarding potential paths for me to take (online certification courses regarding supplementation, or a nutritionist certification course or something I have yet to articulate which will help me in this endeavor--please leave a comment. 

Short of this, I'm considering finding an ND (naturopathic doctor) locally (if they exist nearby), schedule a consult to see if they would be up to the task to be my internist, and or whether they can help me on my path to helping others. 

In the meantime, things at the Salt Mine continue to change and erode, and never, of course, in a good way. Last Monday, I applied for a job at a civil rights organization and I am hoping when I get hired (see? I'm trying to remain positive with the WHEN, not IF), that this will be a bridge job, something to pay my bills (and make a tangible impact in the lives of others, too, hopefully), and will bridge the time between now and whenever I am able to finally make the transition into what I believe is patient advocacy regarding consulting with them more thoroughly about their current medications, health issues, and trouble shooting any possible vitamin/mineral deficiencies.

Last Monday, I not only sent in my application and resume, but I also had an automated phone screening--so I'm hoping and waiting for the next step--the face-to-face interview. I need to dust off my prepared scripts I generated in previous years--and start reading up a bit more on this new organization, to ask specific questions during the interview.

I am using the power of positive thinking and the law of attraction with the words I choose. The job would be close to a 6% pay cut, but the commute is shorter--and by shorter, I mean shorter by 200 paces--it literally is at a halfway point between where I park my car and my current office building. I literally can see the building from where I park my car. I've been doing a lot of visualization and planning. I've taken the time to empty my desk out of anything extraneous or non-essential, purging out old stuff--so it's like a spring cleaning of sorts, and I'm setting up a big 3-ring binder of stuff for whomever will become my replacement--something which was not done prior to me landing this job nearly 18 years ago. 

So, I think while I have a wee bit of a lag today, I'm going to do a quick search for NDs, and I'm also going to set up my reference page, in anticipation of a face-to-face interview.  

Mondays are my least favorite day of the week--and I'm trying to change that.

I hope you're having a good day.

One Full Month Sans Therapist

For the first time in close to ten years, I am without a therapist. From January until the end of September, I was in CBT, and I believe made some progress. 

CBT deals with problems I have currently; however, I believe I would have been better served undergoing Schema therapy for all the old stuff that's been programmed and entrenched in me from childhood, as I am very triggered by familiar behaviors--and at the moment, I've come to the conclusion that I have more issues with women than men, and for the most part, women who are older than I am, either old enough to be an older sister, a young aunt, or old enough to be my mother. 

Thanks to my shitty childhood programming, I am sure I have a combination of schemas programmed into me, but I'd say my primary ones are fear of failure, abandonment, and rejection.  Additionally, I'm generally distrustful of those who I SHOULD trust (parents, family, and some close friends), and I believe my attachment style is anxious-avoidant.

I've been listening to all sorts of podcasts regarding rejection schemas, and CBT, and recovery from narcissistic abuse, as well as podcasts that might help inspire or motive me to leave this shitty job. 

Given the fact Maharajah's medical insurance will be changing come January, I don't know at this point whether it will cover counseling services/therapy. So I guess I'll have to cross that bridge when I come to it in two months. 

Meanwhile, I am still keeping up a brisk schedule of twice weekly acupuncture appointments, twice monthly chiropractic appointments, and trying to minimize what suffering I can. 

Next Monday I will be in NYC for appointments: routine six month follow up with kidney guy for my blood pressure; follow up w/internist where I'll get my 2nd shingles shot as well as a flu shot; and a 2 year follow up appt with a neuro ophthalmologist. 

Meanwhile, there's a thing going on with the ball of my foot, which has been brewing since the injury six months ago in Mexico, and the chiropractor palpated it and speculates something is going on at the insertion point for the tendon. There very clearly is a cyst forming under my callous (not a blister). So ONE MORE appointment either with the physiatrist or foot specialist.

December already has an EMG of the lower extremities and yet another consult with a rheumatologist to see what's going on. I'm ready for the fibromyalgia diagnosis, if that is what is lurking on the periphery for me. I just need to know that something IS going on, and it's not my imagination, and perhaps I'll stop this negative inner narrative I have with myself wherein I think I'm lazy or complacent or whatever, because I cannot seem to do what I need or want to do. 

All this is a lot to process, and is a full time job unto itself. I think I'm doing "good enough," but wish I were doing better. 

Three Months + 15 Days After The Mexico Debacle

The fact that I am even walking amazes me. I am by no means 100% back to how I was before Mexico, but all things considered I am appreciative of every day I am walking without a cane, crutch, or walker. When I get up in the morning, there's a twinge or two, but beyond this, I am moving. Going up and down stairs is still problematic, but I can do stairs if I am left without an alternative.

I followed up with my foot specialist on 8/19, and she released me from her care, and informed me that the ligaments are still in the process of healing up, but what further benefit to be gained once healing is complete will be marginal moving forward, and looks like the range of motion will not be restored completely. 

So yeah, disappointing! But I'm moving. Turns out I have a bunch of accessory or sesamoid bones in my feet, at the back of the heel and around each metatarsal head. When I hyperflexed my ankle during the injury, the spare bones injured the deep interior of my ankle mechanics. 

I'm continuing with my twice weekly acupuncture appointments, that is, until the end of the plan year--turns out the Maharajah's employer is changing the medical insurance YET AGAIN, this time to a plan where it covers 10 visits annually--FULL STOP. Acupuncture has been the only thing to help me. I'm just going to continue to ride it out as long as I can--and of course, hope that her office fees aren't too excessive, as I'd like to continue this as part of my care. 

Also on 8/19, I found my new internist, who is a DO, and of course, thanks to the Maharajah's employer changing medical plans--this DO is not in the network. I am hoping for the best, that we can "invite" him to the new plan, and hope he accepts. It took me two long years to find him. I am not starting over again with someone else, as this doc speaks my language and isn't intimidated by a patient who is actually engaged and involved in their own care plan.

Additionally, I found out last night that my therapist will be moving on to greener pastures towards the end of the month. Coincidentally, she's not in network for the new insurance either, so I would have had to part ways eventually. I'm not heart broken about it, but have a couple more weeks, and we have work to do, and I'm not even sure how to go about doing it--we're going to be focusing on effective communication, minimizing emotionally charged communication. At this point, I'd just assume ditch the next three weeks of sessions. My heart isn't in it, and this was designed to come to a conclusion at some point. 

Lots going on here, trying to continue to make sustainable changes, physically and psychologically, and of course, professionally. 

Life Continues to be a Cha-Cha

The day after I uttered, "Hey, I might be feeling better. I'm walking better. My hip bursitis feels like it's improving," I injured myself while out of the country, rendering me into a wheelchair for a full week, hobbling along to work with the Maharajah dropping me off every day, and me pretty much doing a whole lotta-nada.

We went away again (I know how very lucky I am to be living this kind of life), and Monday was another one of my patented, "trifecta" days where I have up to 3 (or sometimes more) appointments scheduled. All are medical in nature, and all are follow up visits, hopefully helping me achieve my goals of lowering my bp, improving my pain or mobility, and improving my sleep quality--which, will hopefully improve my overall sense of well being.

First appointment was a set back. It was with my kidney guy, who I see 2x annually, who is monitoring and treating my hypertension. Despite my improved numbers ELSEWHERE (pain doc, rheumatologist, even Sam's Club pharmacy!), my numbers refuse to budge at the kidney guy. The time has come for me to take yet another medication, to try to battle yet another invisible dragon--my bp. I've been given a beta blocker to work along with my pre-existing ACE-i and aldactazide. It's a lot. 

I view this as a set back, as I've always measured my progress or success after my bypass by things OTHER than my weight: blood chemistry, how many medications I'm taking, as well as resolved medical issues I used to have. Before my bypass I was on 6-7 meds, which I managed to reduce to 2. Now it's 3. And I'm not happy. 

Additionally, the beta blocker works with the sympathetic nervous system--and if I'm right, that means the medication might help my anxiety--which I now translate to me doing the very thing I did NOT want, to go on an anti-anxiety medication--as I do not want to take medication just to manage going to a shitty job where I am neither fulfilled nor my efforts acknowledged. So I'm disappointed that all my tweaking with Taurine and N-acetylcysteine did not pan out the way I hoped at his office. I suspect I have white coat syndrome. That aside, we're going to try out the new medication for a month. 

This all is a huge hassle, as it involves me searching out interactions for every single supplement I currently take, and involves me jockeying around when I take my current Rxs. And then there's the issue of quality of life--leg swelling? Dry mouth? Am I going to be able to have a cocktail if I want?

Okay--yeah, I know. It'll help minimize risks for stroke. It'll also help me minimize my risks for left ventricle hypertrophy.

Doesn't mean I have to like it.

Second appointment was with my foot doc--and of course I injured myself in the interim between my last appointment and this one. So it was good to see her, get MORE xrays, get a proper air cast to stabilize the ankle further, and get yet another diagnosis: "ankle impingement." I've got spare bones in my feet, and apparently when I hyperflexed my foot during my injury, my spare bones bruised the soft tissue deep in the posterior of my ankle. FUN. 

Third appointment was with the ENT to follow up on my CPAP compliance. Seemed straight forward. And I am getting some benefit out of it, albeit my snoring has reduced when I use it--though I have yet to feel any improvement as far as feeling refreshed. 

All in all these are necessary appointments, which I view as tools to help me achieve all of my goals. 

Here it is, the middle of June, and I *DID* have hope (and the GOAL) of getting myself out of my shitty job, but I'm working on that, too. I know that my mood and stress will change for the better once I am out of here. I just have to be patient and also employ some effective goal setting. 

My CBT homework is to start some lists, of what I want, what type of job, what type of workplace, and of course start researching different job requirements, and computer certification courses. 

Last night was CBT. Tonight is acupuncture. Tomorrow is a dental appointment before work and chiropractic after work.

All this could be overwhelming, I guess. I have everything so organized, I'm pretty much operating on muscle memory and forward momentum. 

Surely something's gotta give, right? 

Life Is Like A Cha-Cha (2 Steps Forward, 1 Step Back)

Remind me the next time I want to verbally articulate that I might possibly be feeling better to just keep it to myself.

I am now ten days out from a pretty bad fall which I sustained in Mexico last week. The fall was 100% preventable and due to negligence, and unfortunately whatever legal recourse available to me would be so limited, it wouldn't be worth the time, sweat, tears, and money to pursue it.

There were several things for which I am thankful surrounding or involving the fall: 

1. That it happened in a controlled environment where I got immediate medical attention;
2. That the resort at a minimum (truly, the bare minimum they actually did for my physical welfare) was to provide me a wheel chair, of which I remained in the entire duration of my visit so at least I wasn't a prisoner in my hotel room;
3. That the injury wasn't more severe or catastrophic.

It happened before we even checked in at the resort, and it resulted in me neither going to the beach, pool, nor spa for my short stint. 

Fortunately for me, I have been in CBT since February and I am nearly done with an online psychology course, both of which have been instrumental in helping me not catastrophize what happened.

Unfortunately, I had a very long wait ahead of me before I'd know with any certainty the extent of my injuries. So there was that sense of dread that what little progress I was making would not just be dashed by this injury, but that it might have been more severe.

I was injured on 5/20, and we arrived back home on 5/23. The moment Uber dropped us off, we loaded our luggage in our car and we headed to urgent care to get an xray. Urgent care provided me a useless air cast and equally useless crutches, and a preliminary interpretation of the xrays of my ankle and my knee. No fractures in either, but some concern of a torn meniscus in the knee.

The next day I called P4.0 to see if she could fit me in, and sadly she works in NJ on Thursdays and Friday she was booked solid. She doesn't have office hours on the weekend, and Monday was Memorial Day. Tuesdays she's in NYC, so the earliest I could get in to see her was yesterday, 5/29, which was already prescheduled, as it was the date of my third and final series of shots in my knees.

She allayed any concerns regarding my achilles tendon and calf muscle, both of which I was concerned with a possible tear. 

I'm pretty fortunate that we travel so much. This wasn't a trip of a lifetime. Mexico is a manageable destination (as is Florida), so if I want to go, we'll go again. It was neither the first nor last time I'll visit either. 

Everyone that knew the Maharajah at the work conference remarked at how composed I was, despite the obvious physical pain and limitation of a wheel chair. And I recounted how lucky I was, regarding the circumstances. Also, what wasn't conveyed was, if your baseline of pain normally is a 4-5, to go from that to say a 7-8 (or even possibly a ten on day 1), makes the additional pain bearable. If I went from 0-1 daily to 7-8, I think psychologically I'd be worse off. So, as my therapist would say to me, my pain is actually serving me (and possibly making me more resilient). 

So my job is to stay the course, continue taking care of myself, and try to rally as much as possible, as the trip to Mexico was not a full vacation, but the intent was for me to rest up and physically prepare myself for another trip coming up. 

On a related note, I feel quite strongly that my new acupuncturist has helped me more in such a relatively short amount of time compared to the years of physical therapy and years of regular chiropractic care.

Onward and Upward

My blood pressure continues to maintain good numbers. Yesterday was 110/70. SWEET. Let's see if it will hold thereabouts when I see my kidney guy next month.

I am now up to my second round of injections in my knee, with the third to happen in 15 days.

I'm continuing to keep a tight schedule, all in the hopes of improving my mobility and pain issues--which reminds me, I need to call the orthotist to find out a status on my orthodics which were being revised.

Appointments in the mornings before work for injections or MRI or xrays, and appointments in the evenings after work for acupuncture (2 days a week, Monday and Friday), cognitive behavioral therapy, as well as physical therapy on Wednesdays and Saturdays with chiropractic on alternating Saturdays immediately following physical therapy. Dental stuff. Eye glasses. 

Then there's the issue of household stuff like groceries and pharmacy runs and laundry drop off/pick ups, and somehow getting all that done. But things are so precariously tight, that if I miss groceries or laundry, it can be problematic trying to find the time to do so. I've tried to get the household into a schedule of running the garbage to the dumpster before work on Mondays and Fridays, and laundry drop off/pick ups after work on Mondays and Fridays. I consider it a win if we manage to do this on a Sunday, which lessens our demands for time on Mondays at least.

While we were away three weeks ago, I saw an acupuncturist twice, and decided to get back into the swing of things with more regular acupuncture appointments. I managed to find a very capable and caring acupuncturist close to home and have been seeing her for the last 3 weeks or so, and have noticed a change in my hip bursitis as well as some improvement with my walking. Perhaps I can delay getting nerve ablation in my back. Only time will tell. But she's very helpful, and I see each session building on the work and benefits of the previous session. I even feel some sense of psychological benefit to the sessions too--even validation in some regards. 

She's such a good acupuncturist, even the Maharajah has decided to seek out treatment from her. And I've recommended her to at least one co-worker. 

Physical therapy is making me stronger but not improving my pain issues. And perhaps once I discontinue PT, whenever that might be, I'll consider joining the YWCA and start going there on Mon-Wed-Fri. Perhaps. 

I've also been taking an online psychology course which has been helpful. It's a 10 week course, and I am up to week 7, and from now until the end of the course, I have to try to entrench new neural pathways by establishing a new habit for me, in this case, improving my sleep.

So I'm chipping away at things, making some improvements, and trying to forgive myself by not achieving my goal faster, but to focus on making incremental progress. Last night I got six hours of sleep, so I just have to start tweaking what time I actually get to bed until I finally arrive at 7 hours of sleep a night.

I have to remind myself, I AM WORTH IT.