Self Care

So very glad I opted-in for medical insurance through my job, and I've made very good use of it all throughout the year.

Here it is, December 23, and I will be coasting for the remaining 8 days of 2021, and don't have any medical appointments or self-care appointments until the new year.

At the beginning of December it was a flurry of appointments and Xrays and MRIs. The plan was for a PRP in the left hip, but given the language of the MRI report, the possibility of a hip replacement being discussed looms in my mind. I'm hoping to get this done in 2022, as no amount of PRP or PT will fix the labral tears in both of my hips. I just want to keep moving, and if possible, try to minimize my chronic pain. 

Several times this year, I have made "false-starts" as it were, in attempting to find a new therapist, preferably one that not only takes my insurance but also provides the type of therapy I am interested in. I have landed upon the names of two therapists who are local to me, who are in-network, and hopefully will be able to provide the type of therapy essential to my issues. Perhaps I will call to set an appointment today for some time in January. 

Beyond all this, Maharajah and I are both boostered. We both got Moderna this time around--after everything I went through with getting so sick after the first Pfizer shot, I wanted something else--and hopefully Moderna will be a great tool towards not catching COVID. 

Hard to believe this past Saturday marked two whole years since I last visited my mom. I still have her holiday voicemail she left for me. Glad I had the presence of mind to not delete it (along with about a dozen other voicemails). 

I wish I could say I am doing better regarding processing my grief, but I can't. I'm still avoiding visiting my brother and sister, as they've proven they're not vigilant in avoiding vectors for possible infection. I have enough troubles as it is without adding COVID (with the potential for LONG COVID) into the mix. 

Isolation and grief don't mix well. It's kind of like taking a sedative along with a shot of whiskey--it just intensifies the effects of both.

With the passing of mom in May 2020, and my dear friend Susan in October 2020, and the passing of my dear Dr. F. in February of this year (after he retired in 2017), I feel adrift. 

The reality is, mom wasn't much of a support in the last 20 years or so, and especially not since landing at Shady Pines in the summer of 2017; however, her passing has been profound for me. I wish I had one more conversation with her. 

I feel as if the foundation of my life is structured like a four legged bar stool, with three of the four legs now missing. I can't expect Maharajah to be my solitary support--that's too much to expect of him--ipso facto, the need for a therapist.

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?