Day 113

Retirement Dispatch Day 113. Things are still splendid. Still chipping away at making decisions to help my assortment of issues, and to help keep me moving forward. 

Ultimately I would like to lose 30 lbs. I see my primary care doc this coming week and will discuss possible revision on my bypass. Lots of improvements to be made. 

This past week the weather was good & I did a lot of socializing outdoor while I had the opportunity. And despite that, I have feelings of loneliness & emptiness creeping in. Trying not to analyze it. 

Early retirement wasn’t my plan. It is splendid not to be feeling like a failure or problem every day, so I’ll take my victories when & where I can. 

Dad’s death anniversary was 2 days ago. I wish he were here. That missing him has not dissipated in 16 years. 

Another Radical Change #2

Thanks to COVID, I moved most of my medical care closer to home. Prior to COVID, 100% of my specialists were in NYC, with the last of my remaining specialists being my nephrologist. 

Last September I found an ob/gyn office near home that advertised something to the effect of “care for every stage of a woman’s life.” 

I changed gynos because for 4 years I have been abandoned/neglected on my menopause journey. In short, I was miserable. Miserable enough to stop seeing the gyno I saw for close to 11 years. 

At my first visit a year ago, ai inquired about HRT. The doc poo-pooed my request saying I was at risk of clots/strokes. 

Before my most-recent visit, I got approval from my hematologist who cleared me for a specific type of HRT. 

When I pressed the doc about HRT, she claimed she doesn’t prescribe it. This information would have been useful to me a year ago. I wasted yet one more year with yet another doctor neglecting me & my menopause journey, she provided ZERO in the way of relieving any of my symptoms & complaints. 

Then almost in a cosmic way, one friend told me about Winona HRT (which is about $200 a month), and my chiropractor found someone he knows who prescribed (but there is a $600 consulting fee and my HRT might be covered by my insurance. 

Then an other friend who lives in NYC highly recommended her doc (who takes my insurance, I’d pay a $25 copay and my HRT copay would be close to $20 a month). SOLD! 

Four days after being told I essentially wasted yet another year of my life suffering, I scheduled my appointment with a new doc. 

Quick & radical. Bold moves from here on out! 

October 14 I see my kidney doc & I have scheduled a consultation with my friend’s gyno for later in the day, and with any luck I will be picking up my Rx within the next 24 hours. 

Hope is one thing, but without having a solid, bold plan, hope won’t get you where you need to be. 

Yet Another Radical Change

In 2019 I started seeing a wonderful acupuncturist. Saw her every week. At the time the spouse’s insurance covered some of it. At the time, she charged $75 an hour. 

Then COVID hit and her pricing went to $85 to offset the price of all the PPE & air purifiers. This seemed reasonable. I saw her every week. 

Then in 2021 I picked up my own insurance at work which is a platinum plan, which had unlimited acupuncture visits. 

From January until mid March I would pay out of pocket to meet my deductible, and for the remainder of the year she just accepted what insurance paid. She was billing insurance roughly $300 a visit every week from 2021-2023. 

At some point around 2022? she changed her hourly rate to $150. I sucked it up, and figured “well, that’s what flex spend is for.”

In the last several months, she relocated to a new office and hired someone to handle the billing.**

Unbeknownst to me, my plan changed, and now I only have 20 visits per plan year. And rather be told this in January when I could have changed up the frequency of my visits from weekly to every two weeks, no, she informs me of this SIX VISITS after my 20th visit, and I was on the hook for $900. (Again, that’s what flex spend is for, and we submitted that to the husband’s flex spend, since I am now retired. However the person who does her billing should have alerted her and she should have alerted me so I could have planned accordingly**.)

Last week, she informed me she is cutting her treatment time from 60 minutes to 30, and the cost still remains $150. So I’m getting less time for the same cost—with me on a fixed income. 

The sequencing of everything in context as detailed above, plus the fact that after five years of weekly appointments this isn’t merely a transactional thing, this is a relationship. And to be honest, I feel that more consideration should have been given to me as a long time client—especially how she benefitted from my generous insurance plan for three years—especially during the early part of COVID when most of her clientele had not returned yet. 

My nose is out of joint about this. And rather than disassociate as I normally do when I am presented with complicated scenarios or emotions or conflicts, rather than set aside my own feelings so as not to make someone else feel better, I am showing up for myself in the form of informing her at our next visit that since I will be starting physical therapy & paying out of pocket for it, for the foreseeable future I am discontinuing my acupuncture treatments as financially I can’t sustain it. 

She doesn’t need to know nor is she entitled to know that I feel like she is taking advantage of me. Also? It is the truth, I can’t sustain it. 

Day 76: More Radical Decisions Afoot

It is now Day 76 since my last day in the office. Zero regrets! It is splendid! 10/10 highly recommend!

Initially, I experienced a bit of separation anxiety or feelings of abandonment, even though it was my decision to leave when and how I did. I miss my friends. That is about it!

More radical changes are on the way! 

The last two years I worked diligently to get myself back on track emotionally as the last 1654 days have been an enormous setback for me, emotionally and physically given the pummeling of: the COVID19 shut down, mom’s death, getting seriously sick after the initial shot of Pfizer vax, instant menopause, etc etc, bringing me to my DVT diagnosis in December 2023 & me catching COVID for the first time in January 2024.  

Two years ago while out recuperating from my hip replacement, I finally had a neuropsychological evaluation, proper diagnosis of C-PTSD, then genetic testing to help determine which Rx would be best, get on Rx, and start up psychotherapy yet again with a new trauma therapist. 

The past two years of doing all that plus holding down a full time job, took all my time and attention and didn’t leave much energy & stamina to consider & focus on tending to the physical. Add to that dynamic the unexpected drama of he DVT diagnosis and sussing out all the consultations needed (vascular, hematology) on top of finding a new primary care doc, it was a full time job to get to this point. 

I am now in maintenance mode regarding the DVT. So now I have a bit of focus for addressing my physical health setbacks, re: pain & weight gain. 

Prior to the COVID shutdown I was still managing well enough from my gastric bypass; however, that all changed with the shut down, with my as yet dealt-with grief, and menopause. I know I have gained weight yet I cannot bring myself to get on a scale yet. But now my blood chemistry is creeping back into numbers that make me anxious, and now I am ready to explore what type of bariatric surgery revision I might be able to get. I want to get under 200 lbs again. 

In the meantime, my new neurologist has run several MRIs on me and has a clearer vision of my collection of challenges I have. Starting next month, I will start a 6 week course of physical therapy to essentially work on building up strength in my ass. Also scheduled: a consult with a new physiatrist for hopefully a kenalog injection in my back & maybe a cortisone shot in my hip. 

My sleep hygiene has gone to shit with all the pain I am in, I cannot find a good position that doesn’t cause pain. 

Next month I also have my 6 month follow up with my kidney doc, and even though that appt is at 11:00, I am going to try to be fasting when I arrive so we can rerun my blood tests. 

After I see him, I have my annual mammo, and lastly a follow up appt with my primary care regarding medications & discuss the bypass revision idea. 

My quick & radical decision to retire really awakened in me a sense of purpose in my ability to be more present for myself & to stop neglecting myself. 

More radical changes are afoot!

Quick & Radical Life Decision

The story behind my quick & radical decision isn’t all that quick!

Where do I start? After nearly 22 years, with the last 6 with my most recent bureau chief, 5 years with my most recent office manager, and the last four years with the advent of COVID, as well as the death of my mom, my tormentor, who died of COVID—the last six years have been a brutal slog. 

I have known since my first interaction with my bureau chief that she was an awful human and an equally awful manager, as each interaction left me with the prevailing worry that I’d lose my job—and one time I even worried I’d be arrested. 

Every little molehill was escalated to mountain status. Bit by bit she chipped away at my confidence and my self perception, never acknowledging my contributions, but shredding me any time I dared to move out from this box she rammed me into. 

The gaslighting & indignities came on much more regularly after my friend left the bureau to go elsewhere. He & I collaborated well, and he was a human shield of sorts. 

I haven’t done anything differently since he left, and yet the perception that that quality in my work diminished markedly was claimed by all three: my bureau chief, deputy bureau chief and my office manager—all three boldly said to my face how they all thought I was being intentionally difficult to work with. 

Essentially they were calling me an asshole. This was enough to rouse me out of my dissociative state for me to defend myself, and also tell all three people present in my evaluation I was insulted they thought that. And when I pressed them to qualify what makes me so difficult, they claim I ask too many questions. 

I then pointed at all three cunts and said, “Each one of you knows I have C-PTSD. What you perceive is me being intentionally difficult to work with is in fact me suffering from crippling performance anxiety & and I ask as many questions as I do to ensure I do a good job.”

This, of course, shattered me. I was wounded in a way that was so familiar and toxic. I knew no matter what I did, I would never get the recognition I felt I was entitled to. If volunteering to work as part of a skeleton crew during the shut down during a god damned global pandemic would not be enough, nothing else would suffice either.

Additionally, over the last 10 years the scope of my job changed bit by bit to the point where it was no longer the job for which I was hired. Same thing goes for the culture in the office changing too. 

For the last six years, whenever I was physically in the office, I would sit & silently weep uncontrollably in my cubicle. Each morning I would say to my husband, “I don’t wanna go. Don’t make me go. Do I have to go?” It was six years of trying to muster up an appetite to chow down on rotten meat.

Two years ago when I was out recovering from my hip replacement, I sought out a neuropsychological evaluation, and got my diagnosis. Then I found a psychiatric nurse practitioner to handle finding the right medication. I even got genetic testing to help determine which medication might be best. 

The medication helps, I still cry from time to time, but it has helped that uncontrollable urge to sob. I am not borked out of my mind, it hasn’t blunted me entirely, so I am still functioning. 

That all being said, after the evaluation broke my heart & broke my spirit, my husband finally said “it is time to retire.” He reminded me of how I stuck it out for my 20 year mark and how it is now nearly 22 years. It’s time.

Before my eval, I requested 7/18 off as we had tickets for an event. The email was sent to my bureau chief and office manager was cc:. The office manager replied with this: 🙁 Yes, a frowny face emoji. Not sure what that means or what place it has in an official email. Looking back on this now makes me laugh, because in the end, my effective date for my retirement is 7/18.  

So after the eval, we went on our cruise as planned, and I would contact HR on Monday, 6/10 from the privacy of my home; however, on 6/5 when I returned to the office I was so stressed out & miserable & unable to swallow coffee or dry pretzels without refluxing them into my trash can. And when the refluxing happened again the next day, I said fuck Monday, and I sent an email to HR on 6/6.

On 6/7 I had my first full on discussion to explore my options. I stated “I’m sure I’m not the only person to reassess their retirement plans in the advent of covid.” I didn’t want to let HR know why I was leaving. I don’t want to walk away mad, I just wanted to walk away. 

On 6/21 I had my last conversation with the director of HR confirming all my choices, and tended to the last detail: determining my last day in the office. When the director asked, “when would you like to notify your bureau chief?” I replied, “How soon may I do so?” When she replied, “Today!” And by 2:11 pm, I sent an email notifying all 3 angry cunts, plus cc: the HR director and cc: my gmail account. 

The HR director spoon fed me the language in my email, and 7/5 was my last day in the office; 7/17 was my last day on payroll; and my effective date of my retirement is 7/18. 

The bureau chief replied first, congratulating me on my retirement. 

The office manager’s email was noteworthy for its lack of exclamation points: “Wow. What a surprise. Good luck with your retirement.”

And the biggest disappointment was my deputy bureau chief, who failed to reply to the email or acknowledge me or my retirement at all—even refusing to say hello to me unless I initiated it. She was the biggest disappointment. I thought we were on good terms & understood each other. 

At one point my office manager wanted to know certain tasks I do, and she only asked about items she had on her list. I talked down to her regarding my methods by which I generate my monthly reporting. “I do them all via pivot tables. If I could teach myself, I’m sure you’ll do fine.”

She asked about a voluminous task which had a 7/24 deadline, and wanted to know where I was regarding it, and stated how she didn’t want to get slammed with it. Well? Calling someone an asshole isn’t conducive to getting them to perform optimally. 

TBH, I had cut back substantially on working on that project. I was only doing things that were essential to my departure, such as archiving whatever files of mine that needed archiving, shredding 22 years of other notes, files, manuals & how to’s to do my job. Every day I threw out bits of this and that, and carted home things I wanted to keep. 

My focus was clearing out my desk, and notifying others in other offices who I interfaced with for archive help, FOIL requests, and interfacing with people at criminal appeals—none of that was discussed with my office manager, and tbh I don’t give a shit anymore and it isn’t my job to point out her deficiencies. Let her figure it out. 

7/3 I was in the office & neither my bureau chief nor my office manager acknowledged me. A handful of four friends got an ice cream cake for me and we sat out on the patio and commiserated. 

7/4 was a holiday. 7/5 was my last day, and all three angry cunts, cowards all, were not in the office. There were no cards nor flowers nor anything tangible I could toss in the trash before leaving the office for that final day. 

Office manager wanted me to leave my ID and my laptop (with all my passwords) on her desk, unsecured. We had mandatory training regarding this kind of thing. 

A week before, I reached out to my contact at the supply warehouse for a box for my laptop—and she even provided a FedEx label for it. I sent an email to HR stating my ID was en route, provided the fedex tracking and cc: my bureau chief & office manager. I did the same for the laptop, but sent the email to asset management & my contact at the warehouse. 

Before end of business on 7/5, I prepared my final time sheet, dropped the items to be fedexed in the bin, grabbed my purse and my air purifier, and I exited the building for the final time. 

Other things I did on my to do list was block all three angry cunts on my cell phone, change the outgoing message on my voicemail, set up an out of office message on my email, transfer files to the shared drive & prepare a thumbdrive for a coworker, then do my final walk about, saying goodbyes and giving out little gifts to friends. I even arranged for a box of brownies to be delivered to the HR director to thank her & her team for their helpfulness in my crash course to retirement. 

By 11:00 am the following morning, my email access was deactivated, and it is now as it I were never there. 

It has been two weeks since, and I wish I could say I feel overjoyed. I am sure in chess, this is like sacrificing your queen, a necessary tactic in order to win your battle. I feel relieved. I will feel even more relieved once I receive my first pension payment. 

Life will go on, and I ate before I started working there and I’ll continue to eat now that I am no longer there. Yet these familiar pangs, waiting for those who wronged me (much like my mom) to apologize. And those apologies will never come. And I have to remind myself “this is how things are now.”

And here it is, the day before the deadline to turn over all those documents which I left for the office manager to…”manage” without me. I hope she worked her ass off over the weekend. I hope it inconvenienced whatever birthday plans she had. However, I doubt she possesses the self awareness necessary to realize her accusations that I was being intentionally difficult to work with were off base. Truly, if I actually applied myself, she would not be able to handle me if I actually applied myself. 

I have always used the analogy of blue cheese to describe myself: either people love blue cheese or they hate blue cheese. No one is wishy-washy about blue cheese. And I understand that not everyone will like me; however, do they have to be cruel about it? 

In hindsight I am thankful for their cruelties. As it was the catalyst I needed to take care of myself. Just like I am thankful for that 18 wheeler that rear-ended my car, and the pain and suffering money/annuity checks  I waited 25 years to mature started to arrive each month last year. Had it not been for that pain and suffering money, I probably would not be able to extricate myself from this ever-increasing toxic environment and end, or at least minimize my pain and suffering. 

This wasn’t the plan, and it isn’t ideal, but I will survive, and for the first time in a very long time, I am optimistic and hope that whatever comes next will be transformative. 

Onward & Hopefully Upward

Monday I saw The Foot Whisperer. We immediately came up with a game plan: Shockwave therapy every Monday for the next four weeks for the soft tissue issues in the right foot. 

The left foot has its own set of issues/concerns. As of late, I have had an ever increasing amount of pain across the instep of the left foot. Right now, we don't know what is causing it. The following is a list of issues it could be:

1. Referred pain due to the DVT in the same leg.
2. Referred pain from the greater trochanteric pain syndrome.
3. Radiculopathy that's in the leg or a pinched nerve somewhere else in the same leg.
4. Arthritis at the site of a fracture I sustained 50 years ago.
5. Possible gout as my uric acid is elevated.
6. Some combination of the above; or some other issue as yet to be identified.

Additionally, 4/2/24 I go for an MRI of the left foot to get a better idea of what else is going on in the foot.

3/18/24 I have an appt with my kidney doc.
3/25/24 I have an appt with my primary care doc.
4/1/24 I have an appt with my gyno to follow up on a pelvic MRI.

Hopefully I can get some kind of consensus between the three of them regarding possibly putting me on low dose HRT instead of gout medicine, as so many of my issues are a byproduct of going through menopause totally unsupported--even the DVT is a byproduct (of several issues in addition to) of menopause. 

So, if you're keeping track, every Monday and Tuesday I work from home, and every Monday and every Tuesday has either a doctor's appointment or a radiology appointment to chip away at my collection of issues, and tbh it's made me very weary. But what other choice do I have? I have a great case study (mom) regarding what happens when you do nothing--everything has a cumulative effect and ends up becoming an avalanche out of which you cannot extricate yourself.

The pain in my left foot is truly breathtaking. I could be walking along fine and then be struck with a pain so intense it just about knocks me off my feet. I could be sitting and watching tv peacefully and then get struck with a throbbing hot pain I cannot ignore. And with the anticoagulant Rx for the DVT, I cannot take ibuprofen, and acetaminophen really doesn't do anything for the inflammation (and is a known liver toxin), so the pain has to be otherworldly for me to take a Tylenol. And the turmeric I resumed daily isn't really doing anything for this foot pain. I keep a cane at work and one in the car just in case I suddenly need it. And I'm still keeping my daily footstep count around 3000, and yet I get seized with this intense pain. Last night I actually sobbed about it and wailed about how I can't wait for my next rebirth so I can finally ditch this shitty body.

Unrelated to the foot pain, and circling back to the pelvic MRI I had on Tuesday, from what I can see on the radiology report, there isn't anything indicated as "suspicious," and there are no masses; so the appointment on 4/1/24 with the gyno is to discuss the MRI and I guess find out if she still wants to biopsy anything. 

This is a full time job: scheduling all these appointments, then actually attending them. A job I don't get paid for, but the payoff is just restoring and maintaining mobility.  I'm doing what I can, but I feel like I am sliding into the abyss anyway.

And in other news...

Today is Long Covid Awareness Day. And four years into this mess, I am still met with resistance. I was supposed to take my break today and sit and chat with a friend. So I show up at his office (with me in an N95), and as I attempted to hand him a KN95, he gave push back and claimed he can't wear a mask. And with that I replied, "Then I can't sit in a closed office with you." We're supposed to have a phone call instead, and really, I don't have it in me to call him. Fuck him and every other plague rat just like him. 

I want my 2019 version of my life back.

Another Week, Another Post

Another week, another post with progress as yet to be determined.

Monday I went to the lab for some blood tests for my nephrologist appointment on 3/18/2024. My nephrologist is normally top notch; however, he only ordered a urinalysis and a comprehensive metabolic panel. He faxed me the order, and before I went to Quest, I selected a lipid panel, triglycerides, CR-P, Sed Rate, and Uric Acid, as it looks like I am following my issues more closely and consistently than he is.

I got the results overnight, and already there's a huge improvement with my CR-P. In August it was 11, whereas my norm is 0-1. This week's value was 2, which is a considerable improvement, so I'm happy that it appears the inflammation is going down--and I can only assume it's because of the anticoagulant is helping by minimizing clotting, and allowing my body time to dissolve the clot.

Tuesday was a consultation with a hematologist. I got some answers, and of course, I have YET ANOTHER FOLLOW UP (I think in July). Right now we don't know what the triggering event was for the DVT, as we have quite a few risk factors in consideration as I am post-menopausal, hypertensive, carry the gene for Factor Five Leiden Mutation, I'm over weight, I'm sedentary because of foot chronic foot pain, and I did some air travel in October, and lastly, yes, my Pfizer booster before we traveled might be playing a part in it as well. So take your pick. 

Only bad thing really is that the clot still has a ways to go, as the portion in the calf still needs to show some progress. This was the part that was completely blocked.

I won't know until July if I'll be on a lower dose of anti-coagulation therapy for the rest of my life. Only the blood tests in July will determine that. I'm less than thrilled.

As I said to the hematologist: If I can't take ibuprofen or aleve because of the anticoagulant, and if I can't take opiates because of the antidepressant, how am I expected to manage my pain if I'll be on anticoagulants for the rest of my life?

He told me he couldn't recommend I resume my turmeric supplements; however, all he could do is tell me there isn't anything documented to contraindicate it with the particular anticoagulant I'm on, and for me to be mindful to avoid gastric bleeds.

Anyway, coming up next week are a pedicure and foot doc appointment on Monday, and a pelvic MRI on Tuesday. This is my life. Even the hematologist remarked on it, "I see you've had quite a few encounters at the radiology department!" 

Most years I empty out my flex spend account by June; here it is the first week of March, and all I have left of my $2500 is $400, which I'll have emptied out before Memorial Day--or sooner. 

Trying to get a handle on this unshakable loneliness I have. It's a byproduct of my C-PTSD, and also in this COVID hellscape which persists is not helping. And the loneliness is only the surface shit I can articulate. I wish I could dig a bit further and get to what I really am feeling. And on a related note, I'm going to look into some meditations or stretches or body work or yoga specifically for somatic healing, as so much of my trauma is trapped in me physically.

I don't know if it was helpful or not, perhaps not, but I was stalking the alumni group on FB for my graduating class, and TBH, there isn't one god damned person in the group who is still alive that I'd even care to see, if I made the effort to attend a reunion--and I know the same is in reverse, no one wants to see me, either. There I go again, always being the outsider looking in, wanting to be included but not, but in the end there are very few, if any, people in the group that were particularly nice or kind to me. I feel so lonely, and yet, part of me worries and wonders about how narcissistic is it, really, for me to feel this way, lonely and feeling like no one misses me. As you can see, I still have a ways to go to break that attachment. But people need people--even traumatized introverts with avoidant tendencies--we just don't know how to navigate it.

Mom & The Malocchio

So today's her birthday. She would have been 79 today. Right on time, this morning her sister sent me a text with nothing but a heart emoji in it. That's what my relationship with her has been reduced to: no actual communication, no substance, just emojis. 

Anyway. Where I left off, I wanted to find someone to lift the curse (or curses) with which mom cursed me. Though I haven't found someone to do the traditional Italian ritual to lift the malocchio, my therapist highly recommended an energy healer out on Long Island.

I am not sure what I hope to evolve from the meeting with the healer. I need to focus my intent for that appointment. Right now, I am hoping to achieve some nebulous goal of the healer unblocking whatever it is that has me stuck in this cycle of suffering and grief and everything that is triggering my C-PTSD symptoms. 

Mom has been dead four years now, and I want her emotionally destructive programming expunged from my psyche so I can move forward with my life. I made so much progress in 10-15 years before COVID, and in one fell swoop, like a tsunami, the pandemic, mom dying, my friend Susan dying, the constant state of stress from assessing my risks for EVERYTHING--it wiped out the life I had.  

I am tired of just existing or surviving; I want to resume THRIVING.

Coincidentally, I was looking at the attendance calendar my office manager keeps, and I see that she did not remove my March vacation dates then we changed those dates to May. So I'm on the calendar for the last week of March (okay, 4 out of the 5 days--I have to be in the office on the Friday of that week). 

Initially I was going to remind her those dates were changed, and then I decided to just keep it to myself, and let the vacation dates stand. I need a break. So, I've scheduled my appointment with the healer for 3/28/24. Maharajah and I plan on going for a movie and doing some other things if we can during that time. I also have been day dreaming and planning and squirreling away supplies and items for a bathroom renovation project too, so I might even have the contractor come out for the initial consultation early on in that week, too. 

Self care takes many forms, and for me, in addition to the bevvy of medical appointments I have booked (so far, 15) for the month of March, I've got a pedicure scheduled and an appointment with the energy healer scheduled. The bathroom renovation project is also self care--as I spend so much time at home now, I want my bathroom to be updated and become as nice as possible, and become my oasis.

Foot doc on 3/11/24
MRI on 3/12/2024
First day of spring: 3/20/24
Internist on 3/25/24

All the hard work of all scheduling & attending these appointments hopefully will bear some fruit on the 25th. Hopefully Spring will provide me with some relief.

Yet Another Cha-Cha

On 2/26/24 I saw the new vascular doc, who is in the same practice as the fat-ist one I saw initially. The RN said they recognized me and wondered why I was following up with Dr. C. instead of Dr. G., and I said how he spent my entire appointment trying to bully me into considering diet pills. I remarked, "Look, I know I'm fat. But I am here to get my leg and DVT evaluated, and NOT to get diet advice in the first five minutes." The RN looked at me and said, "Fat? You're not even the biggest person we've seen here." I said, "Thanks for that, but Dr. G., made it seem like I was the fattest fatty that ever fucking fatted."

The appointment with Dr. C. went splendidly and he answered most of my questions, and even remarked how impressed he was with both, my medical acumen, how organized I was for this appointment, and the initiative I've taken with my health. He even went so far as to entice me to view the ultrasound images. At first I balked and said "thanks but no thanks, I think I'm obsessing on enough things." And when he said, "But the images are really beautiful!" I relented. 

The DVT ran from my groin, down the thigh, behind the knee, and ends mid calf. The portion in the mid thigh has resolved significantly, with a little residual up at the top of the groin, and there is still progress to be made in the calf area.

Additionally, he provided me a name of a podiatrist who hopefully will be able to restore some functionality and reduce pain in my feet. And of course, a follow up appointment & a follow up ultrasound has been scheduled for May.

Cha-cha. 1 appointment = 3 more appointments made.

The next day I saw my ENT for an early annual follow up (thinking I might still have some antibody protection from my COVID infection in January). I'm still suffering from the after effects of COVID, a persistent cough, post-nasal drip, and fatigue. She wrote an Rx for Flonase. A follow up thyroid ultrasound has been scheduled, and a 6 month follow up appointment has been set.

Cha-cha. 1 appointment = 2 more appointments made.

Then I got a telephone call from my cardiologist's office letting me know the TTE I had a week ago was normal--so wonderful! No indication of left ventricular hypertrophy! YAY! And yep! One more appointment made!

Cha-cha. 1 phone call = 1 more appointment made. 

At this point, every single Monday and Tuesday between now and Memorial Day has an appointment scheduled. This coming Monday is Quest for blood tests for my follow up appointment with my nephrologist; and Tuesday is FINALLY! the consultation with the hematologist. 

There are so many appointments I need to keep track of I have created an Excel spreadsheet with my appointments sorted by date and time, and I never make any plans without consulting with that spreadsheet.

In related/unrelated news, the last time I had a pedicure was the end of November, as I had my DVT diagnosis December 5th, I haven't had a pedicure in all this time, as I've been concerned and babying my leg. Out of the blue, I received a text from Jimmy, my pedicurist, asking if everything is okay. I was so glad to get the text from him, as I have been intending to schedule an appointment. The one time I managed NOT to consult my spreadsheet, I scheduled the appointment for 3/11/24 at 10:00; and how SERENDIPITOUS! I see the new podiatrist on 3/11/24 at 2:45! So my feet will be presentable for that appointment! 

I love it when a plan comes together!

After Thoughts Regarding "I hope this happens to you"

Again, like a terrier with a bone, I have been gnawing on the "I hope this happens to you" with an intensity that is not healthy, as for all appearances, it seems like I am on the path to her curse becoming a reality. Clot in leg, agonizing foot pain, reduced activity as a result of both, being depressed and morose. Yep! Looks like it's happening! 

But here's the catch: She may have cursed me and hoped that I'd be as depressed and immobilized and miserable as she was; however, one thing she lacked which I apparently possess is RESILIENCE. 

Instead of getting overwhelmed and putting my head in the sand as mom did for decades, I am trying to do something, ANYTHING, to just keep moving. My gastric bypass in 2011, and my hip replacement in 2022 were tools to keep moving. Researching the hell out of which dietary supplements will help me achieve my goals. Trying to take care of myself. Trying to be gentle with my inner narrative. Trying to find the answers that she never bothered to find for herself. Trying to do the things I want to do for as long as I am able to do them--even if that means being able to go to the store and pick out the perfect tomato, melon, or pineapple! Trying to maintain my independence!

On the surface it would appear that my best efforts were not enough to fight against genetics (factor five leiden mutation, and possible Chronic Venous Insufficiency) or fight against Father Time (menopause). Who knows how much worse things would have been for me had I not opted for the interventions of surgeries or supplements? 

Every day that I do not weigh 300, 400, or 500 pounds is an accomplishment. Yet all some doctors see is just another out of control fat woman. I am more than what other people choose to think of me, and that includes that shitty, sizeist, misogynistic vascular asshole, as well as my now dead mother.

One of the most cruel things mom ever said to me: "I Hope This Happens To You"

It has now been 1,390 days since mom died--nearly four years, and yet, her voice and her hateful words still resonate with me.

Twenty years ago, on the day of our housewarming party, the solitary time my mother ever forced herself to visit my home, the words in the title of this post were uttered as she was struggling to climb the 15 stairs to get to my condo. I was standing in my doorway waiting for her, with my dad and uncle and we all were chatting and laughing about something unrelated to her, and my words really don't do justice in sharing it in a blog post because you miss out on the tone of voice and facial expression; however, if you've ever watched The Sopranos, trust me when I say it was with the same intonation as Livia Soprano saying "Poor you." And every day I climb those same stairs and get to the 7th step of 15, I say, "Fuck you Ann, and every hateful shitty thing you've ever said to me."

As part of my self care or trauma work, I want to find someone who has a grandmother or aunt who is well versed in what I'll call Italian witchcraft. It seems outlandish, but I want someone to perform the ritual to remove the malocchio. I view this along the same lines of eating chicken soup when you have the flu, "it couldn't hurt," and if anything, there is merit in having it done for emotional comfort. And yes, I am convinced my mother cursed me.

I am now 32 days out from testing positive for COVID (first time!) and now 80 days out from my DVT diagnosis, and there are days when I am unable to muster up the energy to even bathe. I caught COVID after attending a mandatory meeting, where I didn't give any push back because my boss has got me convinced I am a problem--so even if I pushed back (I do have medical justification to continue doing remote work two days a week), I'd still be seen as a problem ("there she goes again.") 

I am certain I caught it in that meeting, where I was the solitary one in an N95 respirator, in a closed conference room with people who were coughing, though entirely plausible I caught it from someone asymptomatic. My boss, of course, totally in keeping with her character, has not asked me even once how I was doing. Because the reality is, she doesn't give a shit. 

I could have participated in that meeting via MS Teams or Zoom as others did. I think upon a co-worker of mine who died of a stroke 7 years ago. She dedicated herself to 30 years in our office. And now she's gone, and no one ever utters her name. I think to myself if I am bound to have a stroke or my kidneys shut down, I hope it happens at work. I hope it happens at work because I doubt Maharajah is capable of handling that kind of crisis on his own. I also hope it happens at work because MAYBE? it might cause some of the plague rats to pause and think about how their own actions might have contributed to that situation. However, the reality is, just in the way that Val dropped dead, I know by the end of the week my desk will be emptied and my 22 years of service to our organization will be as if it never happened.

I struggle each day to try to muster up the stamina to do what I can to get through the day. And people's casual cruelties continue in the form of my concerns being dismissed. The tediousness of having the same conversation over and over again, justifying my concerns and viewpoint with people who are either trolling me or lack the GIVE A FUCK to pay attention. I already have a clot in my leg and issues with my kidneys, and I'd like to somehow or another get through the next six years until I retire without having a stroke or going on dialysis, thank you very little!

December 29th I saw a shitty vascular specialist whose solitary job I was paying him for was to assess my leg and assess the DVT, and instead, before I even got into the office, he read my file, saw my BMI and decided instead of assessing my leg and DVT, he was going to try to bully me into prescription diet pills. Mind you this isn't the first, nor will it be the last time I've encountered this misognynistic fat bias. I shut him down immediately. And instead, he kept at it. And when he got tired of me pushing back and trying to refocus the conversation back to my leg, he hussled me out of his office and back to the front desk to schedule a follow up appointment and a follow up bilateral ultrasound to check on the progress of the clot. 

I was like a terrier with a bone all day, just chewing on that, and by the end of the day, I went on the patient portal and cancelled the appointment, as there was no way in hell I was going to get the care I needed for my leg if this doctor could not see ME past what he no doubt thinks is an out of control fat woman. He didn't ask me any questions, no family history, no lifestyle questions etc. Just decided to fat shame me.

I saw my new cardiologist recently and that went well. And I went for my TTE and a CT to get my cardiac calcium score (23!). And the RN said the doc suggested I go on statins (my numbers really aren't that high!). I said thanks but no thanks, I want to try to get proper care for my feet so I can keep moving and hopefully my numbers will improve. 

Two more days (2/26/2024) until I see the NEW vascular specialist, and I have already prepared my characteristic 8.5 x 11, bullet pointed list of questions for that appointment, and hopefully I'll have some valuable information from that appointment. I even dare to hope he is able to help my foot pain issues, and if not, I hope he has a recommendation for someone who is a vascular doc with a sub-specialty in feet. And in ten more days (3/5/2024) I see the hematologist, the appointment date is literally three months to the date of the trip to the ER when I got diagnosed with a DVT. 

I dare to hope for some positive transformation as spring time approaches.

Trying to See The Brighter Side

Where we left off in the last blog post of four months ago, I saw my kidney guy. My numbers were elevated, and I wanted to try some things before other interventions were necessary, and wanted to re-run the labs. All reasonable.

On December 5th I went to Quest for the 3 month follow up labs; however, for 6 days solid prior to the 5th, I had been experiencing what I thought was a charley horse cramp in my thigh. Over the course of the 6 days, it shifted to behind the knee, and ended up in the back of my leg, mid-calf. The pain was unrelenting, but manageable. And for 5 of the 6 days I treated it as I would any leg cramp: I blasted it with my Theragun, I iced it, and the last 2 days I chewed a baby aspirin.

So, after I had my blood drawn at the lab, I called the primary care my new gyno highly recommended to me. I tried to get an in office appointment, and none were available, but a video appt was available. It became increasingly more obvious to me that I needed to get my leg checked out and a video appointment was not going to accomplish much. I then headed to urgent care.

When I arrived at urgent care, I efficiently summed up that I was 17 months post op from a total hip replacement, I was hypertensive, I carried the gene for Factor Five Leiden Mutation, and I have had a cramp in my leg for 6 days, and though I hoped it was just a cramp, I was concerned it was a DVT. Urgent care waved me off, and recommended I go to the ER, as they don't have the ultrasound needed to rule out the DVT.

I arrived at the ER at 9:30 a.m. I was lulled into a false sense of security as there were only 3 other people waiting. When they called my name and I walked through the double doors, I was crestfallen when I saw SEVENTY-FIVE people in the ER. They put me on a gurney in the hallway with a clear view of the entrance where EMTs bring people in via ambulance. More and more people came in, and thus, I saw the ER nurse less and less, once per hour, if that.

The RN would ask questions, then disappear for an hour. Return. Ask more. Disappear. Lather, rinse, repeat. "Want a tylenol?" was met with me replying "that won't do anything, please give me a Flexeril, if possible." Another hour went by. Finally got the Flexeril and a bit of water, which was the only thing I had taken by mouth all day, as I went to the ER right after going to the lab, where I went for a FASTING blood test. 

Then the ER attending showed up, asked me some questions. I replied with the same script I gave the RN. Another hour went by. Then an ultrasound was performed. Another hour went by, before the ER attending gave me the verdict, that my fear was confirmed, it was in fact a DVT. Another hour went by. Then I was administered Eliquis. And another hour went by before I was released. By this time it was 6:30 p.m. NINE HOURS LATER. 

I was told to pick up my Rx at the in-house pharmacy--roughly 1000 foot steps from the ER, only for me to hoof it back to the ER as I parked in the ER parking lot. 

I promptly got back home when it felt as if every fiber in my body spasmed at once, with my fingers and toes cramping into scary and unnatural contortions. I have had gastric bypass, and a total hip replacement, and a dodgey root canal that caused my tooth to explode when they tried to extract it--NONE of that shit was as painful as these terrifying cramps. They jarred and worried Maharajah to the point of suggesting he take me back to the ER. I begged him to dig through our household "rainy day" stash of extra Rx meds, to see if there was an expired flexeril in the bunch. Sadly I had to make do with a hydrocodone--at least it knocked me out. It got the job done.

As I was in-between my former primary care and finding a new one, I tried the office of the doctor my gyno recommended, and sadly THAT primary was not available, but I managed to see her associate. TBH I was not expecting much from the appointment. He wasn't the doctor recommended to me, and this was now a totally different situation than a comparatively casual initial consultation wherein I was super prepared and focused. In this case, I was lucky I had the presence of mind to provide my hematology work up paperwork from 2021, and showed up, in agonizing pain, distracted, unfocused. 

"We're going to get through this together," he replied. TBH, I don't know how I managed to hear those words and not burst into tears; however it would be several days later before the shock of the DVT diagnosis finally set in and I was able to finally feel my feelings, and sob in sadness, terror, and feelings of failure frothed at the surface. "What didn't I do?" I kept asking myself. I had all these surgical interventions, and lifestyle changes, and try to keep moving and make smarter choices--hell--ANY CHOICES, and yet, here I am wondering if the tipping point has been met and I'm going to slide down the slippery slope and become my mother. 

Now for the absurdity--the first appointment I managed to make in my barely functional fog of shock was the hematologist my primary care wants me to see for an evaluation. THE EARLIEST APPOINTMENT IS MARCH. Although my initial response to this has been just shock and disappointment and worry, the hematologist appears to be "of a certain vintage," and might very well be the Dr. F., in hematology. 

Next appointment I set up was cardiology. I had an appointment on the books for January 8th, but now that this recent diagnosis popped up, I don't want to be trucking into NYC for all the follow ups etc. So I asked my existing cardiologist if I should come in for that appointment and schedule the TTE which was mentioned during my last visit, or should I just go see the cardiologist in the same group as the primary care and the hematologist. My cardiologist said everything with my heart is fine and stable and I can wait until February to see the new cardiologist local to me.

I looped my orthopedic surgeon in on everything, and he seemed perplexed by it all, despite the fact even a preliminary search online shows that patients post-op from joint replacement have like a 10-20% risk of developing a clot. I am not sure what to think of this, but he did state how I did not mention the leg cramps. I said I thought the cramps started after last visit (July--5 months ago), but I know for a fact I mentioned a dull ache deep in my groin.

Hindsight is always 20/20, and of course, I was raised not to feel my feelings, so it has been quite the process for me to even know what I am feeling now, but early on, I was literally in shock this was happening and worried about a stroke lurking in the shadows. However, in hindsight I do remember having horrible leg cramps, but they were a rarity, and usually only happened when I spent an entire day in NYC walking about 10,000 foot steps in between and after appointments. I'd come home and think it was just my electrolytes out of whack and I'd eat a banana or drink some coconut water and the cramps would dissipate. How was I supposed to know that I was in danger?

Hematology in March and cardiology in February notwithstanding, the first appointment with a specialist is tomorrow, when I see both, my primary care doctor first thing in the morning, and then I see the vascular specialist. I am hoping the latter will have some answers for me, but from what I can determine from what I've read, and while I don't know if I'll be on the Eliquis for the rest of my life, at a minimum I will be on it for 3-6 months. 

Now regarding the title of this post, the brighter side, if there is a bright side to having a DVT--I remembered that my grandmother had a stroke and fell down a flight of stairs, and roughly my age (+/-) when this happened. So, my dvt could have been or had a worse outcome. But I'm still in pain and worried every day that I'll have another horrible painful cramp, and worried about a stroke, and what all this ultimately means for the quality and length of my life.

Holiday Jeer

It is pretty difficult to try to move forward with my grief process, when I am reminded regularly of mom's legacy to me. In this case, her legacy to me is loneliness. She sabotaged most of my relationships, and since her death, I have only seen my siblings and mom's sister at two funerals.

I'm smart enough to know that while the loneliness is real, it does warp the emotions too. Between mom's death and whatever damage she did talking shit about me to others, I know that what I am lonely for is the ILLUSION of family I once had.

My relationship with my sister is an occasional call--in this case, when we spoke on Xmas eve, it had been four months since we last spoke. My brother and I texted each other "Merry Christmas," and that's the extent of that. And regarding my aunt? Radio silence, though the last time I heard from her, she randomly texted me out of concern because of flooding in my village this past summer. 

I don't hear from any of my direct first cousins, and I am in touch with a handful of mom's first cousins, but I guess they're in the safe zone because mom didn't have much to do with her dad's side of the family. I'm fortunate for those relationships, but they're at a safe distance.

This year I didn't proactively send out holiday cards. And due to a health issue, I didn't do up my usual holiday cookie baking extravaganza, so our mantel has a handful of cards. I didn't even put up a tree. 

We are still avoiding crowds and taking precautions against COVID. My sister caught it again; dad's sister caught it again. But let's face it, everyone who isn't masking are a vector for infection. 

I thought I'd be intrepid enough to go to the movies (with an N95), only to discover that the last of the three cinemas near us closed in October. 

"New Normal" = the rest of the world is going about their business as if it were 2018, meanwhile I'm still limiting what I do out of concern--and even more so now that I've been diagnosed with a DVT.

Still feeling the weight of mom's death and the covid isolation, and it feels too similar to rejection and abandonment.

Things Are Shifting

Last week, I saw my kidney guy. All in all a good visit, though full disclosure, I have avoided getting on a scale for nearly three years. At the beginning of the pandemic, I thought to myself, if the world was ending, FUCK IT, I'm eating corn chips and potato chips after a decade and a half of denying myself.

I avoided the scale all this time, as I knew I gained weight and I could not handle the defeat if I gained 20-30 lbs, which thanks to menopause, it certainly feels like it. Turns out I gained only 6 lbs, which to me might as well be a hearty bowel movement away from maintaining my weight. So not as big of a failure as I thought.

I informed my doc I am not going to see my internist, as I am in the process of finding a new internist and a new gyno as I feel both are not supporting me the way I think I need to be supported. So far it's been over two years of me flying without any adequate support regarding menopause. I've been on my own, left to figure out how to navigate around issues that all seem unrelated but could be: after 5 decades of no UTIs, I've had a UTI each year. I have a weird itch in a specific spot on my foot, my foot pain and elbow pain are off the charts. Insomnia. Anxiety. Depression. Weight gain. You name it, it's an obstacle course for sure.

Anyway, as I said I wasn't seeing my internist, I asked my kidney doc to run all my annual labs: lipid panel, thyroid panel, metabolic panel, cbc/chem 7, and toss in a ESR, CRP and uric acid for good measure. So glad I asked for that last one, as my numbers are the highest it's ever been, and NO ONE has been monitoring me since my reproductive endocrinologist retired in 2017.

So I'm making some changes to my diet, eating cherries every day, and trying to eat oatmeal 3x a week (on days I'm in the office). Try to hydrate more. And changing some of my dietary supplements back to things I was on before and had tinkered with in the last year or so. This morning, I even managed to get on my recumbent bike for 10 minutes, and hope I can do this every day for a week, then bump it to 15 minutes next week.

Another shift I have noticed is my ability to accept some things. I'm quick to discount these things as they aren't BIG ITEMS like accepting that mom, my tormentor, is physically gone, or accepting I was misunderstood & abused for a half century, or accepting I've lost my family due to mom's smear campaign. But all in all, I managed to accept the doctor's appointment as USEFUL and not a failure.

Additionally, I scheduled my annual mammo at my usual place which has since been bought out by a larger hospital. The day of the appointment I got a call informing me I'd need to reschedule, as the technician was sick. Rather than get bent out of shape due to the inconvenience of it all, I paused and realized this is all for good because ultimately I want to consolidate all my care & imaging in one place, and I have a consultation at a gyno practice close to home that is associated with another imaging center, and well, the universe made this choice for me. Better for me to have all my stuff in one place. 

And the last thing that I managed to accept was a dear friend calling me a snob during a conversation. And right in that moment I stopped him and said, "I'm so glad you feel that comfortable to say that to me." He immediately apologized & and I said no apology necessary--you didn't say it to be mean, and I clarified my comments which led him to say I was a snob. This is a huge change for me, as my normal response would be to recoil and feel wounded. But this is a trusted friend, and we both had a good laugh in the end.

I was hoping to go the remainder of the year without any more doctors, as I don't feel it is safe to go to medical settings during a COVID surge with a new variant on the horizon, and the new vaccine boosters don't come out for another 2-3 weeks.

Additionally, in mid-June, without discussion, I discontinued my regular chiropractic appointments, and interestingly enough, my chiropractor who I have seen for 18-19 years hasn't zapped me a text wondering when our next appointment is. I just don't feel safe there anymore, as he doesn't require his patients to wear masks, he doesn't have an air purifier, and doesn't have the windows open--plus I am usually the last appointment of the day, so I'd rather not be bathing in the vapors of dodgey, unmasked strangers. 

Anyway, this is what my life has become in the last 1269 days: work, food shopping, acupuncture, minimizing medical appointments wherever possible, dining outdoors (from Spring thaw to First Frost), farmers market on Sundays.  My world in many ways has gotten smaller than it was, and I've lost what little sense of community I had. It's a good thing I'm an introvert at my core, but even introverts need to feel some social connection some of the time. 

Rome wasn't built in a day. I'm lucky I still have choices to make, and I'm making the best choices possible, and trying to appreciate the little things, like good sleeping weather on a cool August night with the windows open and the curtains flapping in the breeze. My world has gotten smaller, but my life is good.

It's Been Two Months Since My Last Blog Post

Not much to report. Still doing what I can to avoid catching The Rona. Maharajah & I are like pink unicorns (rare! non-existent!), as we are the last of everyone that we both know who have managed to not catch the virus.

All this is to say, it makes us a huge pain in the ass to the majority of people who are acting as if the pandemic is over. I'm holding out hope that Novavax will become available, and once it is available, hopefully I won't have to be in crisis mode, high alert, hyper vigilant. It's exhausting constantly assessing risks.

That all being said, we did manage to go on a cruise to Nova Scotia last month, and managed to do so and not catch the virus. So no huge hardship! It can be done. 

I have curtailed a lot of my walking, 50% due to mobility issues due to that foot injury from 2019 in Mexico, and 25% the weather has just been so unpredictable and extreme this summer, and 25% I don't feel like being harassed by random men on the street if I am wearing my mask. 

So let's see, where am I in the scope of my medical shit as that's the focus of this blog. I've been on trintelix since December thereabouts, and the lowest dose is holding me, though lately I have felt as if I were about to sob at my desk, and yet the feeling passes. 

Two weeks ago I had my 12 month follow up with the surgeon regarding my hip replacement. All is well with that, and I don't have to bother seeing him again for another two years. I saw my ENT the next day. I'm good for another year. And I cancelled the ortho evaluation for my foot, as HSS isn't requiring masks anymore, and it just isn't worth the risk going to a crowded waiting room, knowing I'm 10 months out from my bivalent shot I had in September. In the meantime, I'm trying my best to rehab my foot, but I know that will only go so far. 

In about 2 weeks, I have a regular appointment scheduled w/my kidney guy. Normally these are every six months, and I flubbed the scheduling. So hopefully this will be the only appointment this year. I'm really cutting back on all my care. The rest of the world has moved on from COVID, and yet, here we are 1200+ days into this and I feel LESS safe now than I did at the beginning. Hopefully the kidney guy can run whatever annual tests he can so I can avoid going to my PCP for an annual exam, as when masking was still mandated, she was sloppy about it and wore a "baggy blue" and not a respirator or a 3m Aura. I also have my mammogram that same week, so once this is all done, I am done with medical shit for the remainder of the year--with the exception of my weekly acupuncture appointments. 

He doesn't know it yet, but I've even curtailed my bi-weekly chiropractic appointments too. I think I am on week 3 or possibly 4 since my last appointment, and I'm not keen on going back. My appointment is the last one of the day, and even though he's wearing an elastomeric respirator, he's no longer requiring his patients to mask up, there's no hepa air purifier evident, and the windows aren't always open. My chiropractic appointment is usually about 30 minutes more more, with me lying on the table with a heating pad and a TENS machine blasting me before he does whatever sorcery he does. I'd be happy just to ghost him, and have him mutually ghost me in return. Let's see how long it will be when he finally breaks down and texts me.

Even though I am dining out (always outdoors), and having acupuncture, and going to work (I mask up any time I am away from my desk, where I have a UV HEPA air purifier blasting 24/7, even days I'm not in the office), I'm still out and about doing things in a modified way, it still feels very isolating.

My sister's husband has stage 3 lymphoma and MS (and a post-viral exacerbation of his MS, too), and has decided not to mask up or take precautions. Her daughter who has a blood clotting disorder (and lost a kidney days after she was born) isn't masking either. And my sister is just complacent about it all and breathing in all the covid laced vapors her husband and daughter are expelling--and then asks me when are we ever going to visit again. This is the same level of cluelessness everyone in my family is exhibiting. And I'm a weirdo or a pariah because I put a higher premium on maintaining whatever level of health I currently have. 

Like I said, it's very isolating. 

Anyway. I'm still alive and kicking. Let's see what the next few weeks of summer will be like.

Are You There Blog? It's Me Maven

Not sure what to blog about. Just life gets in the way.

At current writing it is currently 1,149 days since the shut down in 2020. It is now 1,094 days since mom died--in fact, tomorrow is the anniversary date. And it's 293 days since my hip was replaced.

In regards to the hip, I'm doing fine. The only limp I have now is related to the foot & ankle injury from my trip to Mexico in May 2019. Damn. Nearly 4 years since the injury, and every step I take with my right foot is problematic, and no doubt is the source of my IT band & Greater Trochanteric Pain Syndrome.

As my regular physiatrist was on maternity leave, I started to see a highly rated foot doc who is nearby. I started seeing him in November after a pain flare started in October; and I stopped seeing him for a multitude of reasons, one such reason was regarding masking compliance. I can live with a hobbled foot, I'm not all that sure I'd be able to live a life of any reasonable quality if I caught COVID. 

Touched base with my regular physiatrist about a week ago. New diagnosis to the mix: cubital tunnel syndrome. Just add it to the pile of issues I have, and that I now have to wait AGAIN to get any kind of relief. Xrays done. PT was ordered. Can't get in to see my physical therapist until 5/23, so that's another 19 days until I can START PT, before we can order the MRI, and wait some more until I can get the PRP shot and get some relief--a shot I am paying out of pocket for. Hurry up and wait.

Then there's the issue of the foot, which looks likely I'd need surgical intervention on it. And of course WAIT SOME MORE for that, go through more PT that will only aggravate the situation, etc etc. Meanwhile I've lost function in the foot, and cannot climb stairs with my right foot, and I have to limit my foot steps daily to 3000 or below, because anything more than 3K will put me in the danger zone.

Still going for regular acupuncture appointments weekly, and they provide me a lot of relief, both physical and emotional. The acupuncturist is still masking up and has the air purifier on, so I feel reasonably safe. 

Still going for chiropractic appointments 2x a month, and I suspect eventually the chiro will stop wearing his respirator. He went to FL last month, and of course he caught COVID, and kept saying how mild his symptoms were. I suspect he'll eventually lose his fear of the virus as a consequence of the mild symptoms. And the day he stops wearing his respirator will be the last day I see him.

This is the way I've been triaging my care.

I might avoid going for my annual physical at my GP, as their office was sloppy when masking was actually mandated; and I suspect they have already stopped insisting everyone mask up, patients and doctors included. Which means I'll triage my care further, and only see my kidney guy for my meds & any blood work that needs doing. So I've whittled my cadre of docs and specialists down even further. I've moved what appointments I can to June and July and hope for the best. But for appointments such as my ENT or my dentist, I have to remove my mask, and that is problematic for me. 

Anyway. So, I'm still dealing with chronic pain from an assortment of issues, sleep deprivation that the pain no doubt contributes to; and I'm still dealing with anxiety and depression and grief. The Trintellix has been helping with the depression, as it's been useful towards keeping me from sobbing daily. The anxiety is still there. And my grief? It's a collection of stuff from the obvious/direct: grieving the loss of my mom; and the indirect grieving the loss of the life I had, grieving the loss of the illusion of family I thought I had, and grieving the luxury of not knowing how truly awful a lot of people are. 

Death is the final abandonment. Death is the final rejection. And for someone who has deeply entrenched abandonment and rejection wounds, I cannot process and accept what has happened, as I an continuing to be triggered and wounded time and time again by people I once thought I knew, and once thought I loved or respected, people who have been living their lives as if all of this is over. How can I heal from my mom's death, when the thing that killed her, COVID, is not managed, and is being ignored by everyone of any consequence?

It's taken me until my 50s to get a proper diagnosis, C-PTSD; and it's taken me until recently to realize that my stamina issues and this thing I've come to learn is PEM (post exertional malaise) is related to the C-PTSD. It's a real thing, and I guess I should be kinder on myself. I'm not lazy. There's plenty I want and need to do, but I have to do so in such a way where I'm not compounding my pain.  

13 Days Into The New Year & 17 Days Into Trintellix

So where we left off, the Viibryd was helpful insofar as it kept me from my crying jags; however, it came at the expense of my blood pressure which was super high for me.

We are now 17 days into Trintellix, and so far, it seems to be helpful without sacrificing my blood pressure. I'm even managing to bathe regularly, every day to every other day, so that's improving too. I know for myself, my reluctance to get cold and wet from showering is an outward sign of my depression and self abandonment, so it's nice to see that improving.

It's a tool in the tool box as I say to my trauma therapist. I don't expect all my problems to magically disappear; however, the analogy I gave her was that before you can set a table and host a dinner party, you have to clear the clutter off your dining room table. I'm hoping the Rx will help me clear the clutter, stop me from crying, so I can actually continue my work. 

After several months of discussions and unpacking stories and traumas, this week we finally identified in more specific terms what I want to tackle with my trauma clinician. I narrowed it down to two life traps: rejection and abandonment. For example: I cannot tolerate any negative feedback on my evaluations at work and view it as an outright rejection of all my contributions & conscientiousness. I also view Maharajah's interest in nature walks and other outings as him abandoning me, him trying to escape the hell it must be to be around me.

I had my six month post-surgical check up with the orthopedic surgeon who replaced my hip, and I'm doing so well he remarked that if he had not been the one to replace my hip he would not be able to detect that I had a joint replacement at all. Range of motion is great, and my only complaints are continued numbness & sensitivity at and around the incision site, as well as occasional discomfort deep in the groin if I sit too long.

The surgeon even did an assessment of my right hip, and referred back to previous xrays and MRIs where the right hip was visualized, and remarked that it's unlikely I'll need to get the right hip done--so all the issues I have right now regarding gait and referred pain is related to my effed up feet.

Still going for twice weekly appointments to the foot doc, getting therapy for the plantars fasciitis which has hobbled me since I walked close to 10K footsteps on Columbus Day. According to Maharajah's assessment, I'm about 50% better. I had a cortisone shot about a week ago which was so utterly agonizingly painful I doubt I'll have another. So, right now I'm trying to do a cost benefit analysis of whether I should have shock wave therapy before or after our trip we have planned in the early spring.

I worry if I get the shockwave therapy done beforehand, "what if" there is a complication which impacts my ability to walk? And I worry about waiting until after the trip and "what if" I walk too much on the trip and hobble myself again. All things to consider. And of course, the financial consideration as it isn't covered by insurance. 

Beyond this? We still have managed not to catch COVID, and we have not visited any of my family save for mom's funeral in May 2020 and the funeral of my cousin's husband in September 2022. We visited friend in July for what seems like an annual visit now (as we refuse to visit indoors, as their kids are both in school and are vectors for infection).

In the spring we will be traveling, and I'm doing so under duress, as three years has been a long time to give up something we love so much. 2022 saw Maharajah traveling (for work) to Vancouver, and to India to visit his family, and both times, remarkably, he came home safe and uninfected.

Part of our travel gear for this trip will be Enovid NOS nasal spray, which we'll apply 2x a day, and hope for the very best possible outcome with this. 

I held out as long as I could, firmly refusing to travel from 2020-2022, and said to M at some point I'd consider resuming travel in 2023, and? Well? It's now 2023, and I cannot expect him to oblige me refusing to travel any further. 

In the Beforetimes, I used to get so sick from air travel, and only after we started masking on planes did that change. I guess I am fortunate to have had that personal experience, as it was sufficient empirical data necessary to prove to me, ever the skeptic, that effective masking WORKS. I didn't need the WHO or the CDC or Tony-fucking-Fauci to tell me what I needed to do, I just did what needed to be done to keep me and Maharajah safe. It is dispiriting to realize how reckless, careless, ignorant, selfish, stupid, gullible most of my family are (based on how they've navigated the last 1000+ days) and how unsafe I feel even just thinking about spending time with them. 

I'm just now learning how I cannot control my thoughts, specifically, the first thought that comes into my head. The brain and subconscious will fire a neuron and an idea pops into my head. What I do immediately afterwards is in my control. Do I allow all the related thoughts continue to cascade, followed by the FEELINGS those thoughts unearth? Or do I distract myself, and interrupt the flow? 

So yes. I miss the illusions I had about my family. And in the words of mom's final xmas voicemail she left me in 2019: "Well, this is how things are now." And my thoughts now drift to something more productive, like how I really enjoy how my body wash/shampoo/body lotion smells, or thinking about how impossibly crunchy my baguette will be at lunch today--simply put, enjoy what I can in this moment--which right now also is me hearing my co-worker and dear friend of 20 years laughing.

Ten Days Later (Viibryd)

After such a long wait & genetic testing to figure out which Rx to try, ten days into viibryd and I don’t know what to say. 

On one hand, I am no longer sobbing every day; however, my stomach hurts, and the last couple days I have developed a bad headache. This morning I decided to check my bp, and it was crazy high for me, 177/97 (when my norm usually is 117/70). I checked it a couple times in a row and the numbers kept going up. 

I texted the assistant for the NP who prescribed the Rx to me, to see if I could get a video appt for tomorrow, and as of yet (9 pm), still no reply. So I am popping magnesium & taurine and hoping it will bring my numbers down enough to keep me out of the danger zone. 

In the interim, I am left with the worry that I might have to sacrifice my mental health for my blood pressure, or visa versa. Quite the dilemma. 

The Journey Continues—Or Begins AGAIN

Finally, seven months after requesting a neuropsychological eval, getting a couple official diagnoses, and finally getting a psychiatric NP, and finally getting the results back from genetic testing to determine the best choice of Rx, after 11 years being off antidepressants, I am back on them.

I don’t count the Wellbutrin I started (and stopped) earlier this year as anything other than yet another failure—and technically, the 11 year statement still applies. 

So far I have 2 doses in, and too early to tell. Plenty of abdominal discomfort and gastric distress, but that should pass in a week or two—and if it doesn’t, hey, maybe I might lose some weight. Who knows. Pigs can fly too, right? 

Today I’m heading into NYC for my regular cardiologist appt. It is almost like old times—just with an N95. 

As always, now-a-days, I just hope I don’t catch COVID or something worse by going to the doctor’s office. 

Day 124

It’s wild to consider I am now 124 days post op from my hip replacement. All things considered, I’m pretty amazed at the whole process. Although I am not 100% better, I have managed to get back roughly 85% of my range of motion, and hope as time goes by and I continue to heal, that eventually I’ll be able to put my socks and pants on without having to put my leg in place with my hands. 

Pain has diminished, save for the incision hyper-sensitivity, and my inability to roll over on my left side. Yet. hopefully in time that will change too. 

These days I limp because of my problems with my feet, and this week I found (yet another) specialist who has a real plan (or “recipe” as he calls it), and today I start therapy with him for my feet and get cast for yet another pair of orthotics. 

Hopefully this will be enough to diminish my agonizing foot pain enough where I won’t be entertaining surgery on my ankle. The ankle has some soft tissue damage from my Mexican Adventure in 2019, but right now besides an occasional uncomfortable POP!, and instability, I don’t have pain. My pain issues are all on the bottom of the feet, bi lateral  heel spurs and plantars fasciitis. 

As I told the doc, I had the hip replaced to diminish pain and increase mobility, yet because of my feet, I can’t walk more than 3000 footsteps a day without losing countless days after, due to the resulting pain. 

So yet again, I start yet another journey of a thousand miles with a new specialist, and today I take those precious first steps.