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. 

Day 112 Post-Op

Not much to report here, as things continue to trundle along on its own trajectory. I was discharged from PT on 10/25/2022, with glowing details of "excellent" compliance post-op. I'm still struggling a bit to cross the leg and do the external rotation necessary to put on my socks, but I guess that will all come back to me in due time. Follow-up with ortho is set for January 2023.

10/10/2022 was a duo of appointments, nephrologist and a neurologist. Nephrologist was usual six month check up for my blood pressure and I'm being monitored for CKD. Neurologist was a long-awaited EMG which didn't bear much fruit beyond median neuropathy of both wrists, mild to moderate neuropraxia (mild left, moderate right) on both sides, as well as left ulnar neuropathy at the elbow/cubital tunnel syndrome. 

Physiatrist is on maternity leave until January, so I guess at this rate I won't know what the next course of action will be. Maybe I can schedule my follow up with the ortho and my follow up with the physiatrist on the same day?

The only appointments in December are my annual appointments with both, my cardiologist, as well as the neuro-ophthalmologist. 

Still masking and COVID negative, and anxious as hell about both.

Started speaking with a trauma therapist/clinician three weeks ago, and had 2 appointments with a psychiatric NP to help navigate and identify an Rx to help support me while I "right my sails." Still waiting on authorization from insurance regarding genetic testing to find the optimal Rx--however, it's been 3 weeks, and I wish we just settled on Prozac so I would be on SOMETHING in the interim, as I'm still sobbing daily, and having anxiety attacks.

Still avoiding people--which is easy because at this point most people are avoiding me. 

New Normal

I don’t know about anyone else, but the “new normal” looks just like the old normal. Or “new normal” clearly means different things to different people, as clearly a lot of us are living entirely different realities. 

One reality is science based & cautious, masking & vaxxing and trying to ride out this mess. Another reality can be summed up thusly: “what mess?” As if 1.2Million+ US Americans haven’t died because of COVID. 

“The fish stinks from the head” as the old saying goes, and in this situation, the head is the WH & the CDC, both of which are misleading us into thinking we are post-pandemic, which clearly we are not. 

“It’s the new flu.” From Jan-Aug of this year (2022), 225K US Americans died of COVID—that figure is FIVE TIMES more deaths in any given year for flu deaths. 

I admit to not being a “math person”; however, I understand how it should work, and in this case, the numbers should be going DOWN markedly in order to justify removing all the mitigation efforts to beat COVID into submission. 

Instead, we are told lie after lie, meanwhile kids in school, people in nursing homes, as well as disabled & immunocompromised people all are being sacrificed to The New Big Lie (that the pandemic is over), all to keep the economy churning along, yet the powers that be fail to realize there are still supply chain interruptions and interruptions of service DUE TO COVID MAKING PEOPLE SICK AND MAKING THEM DIE. 

Instead of the pandemic ending because it has actually become managed and endemic like the flu, the powers that be have eliminated mitigations & discontinued testing & contact tracing & reporting—simply put IGNORING & DENYING this issue still exists. 

Meanwhile people continue to get infected & re-infected with (what I predict will be called respiratory HIV) COVID, get sick and either get Long COVID/disabled by it or die from it, which benefits no one. It doesn’t benefit us the people, it doesn’t benefit the economy, either. 100% it benefits people who have a vested interest in the companies that make the anti-viral meds etc. 

In 2020, I was one of the first people I knew who started masking & I will no doubt be one of the last to discontinue doing so. 

In “The Beforetimes” I was neurotic, risk averse, and distrustful of others, and in the 948 days since the beginning, I have become even more so. 

Survey finds more than 40% of Americans have misled others about having COVID19 and use of precautions

This article only confirms what I have *witnessed* with my own eyes with people I KNOW, and further drives home so many things: I can’t trust anyone anymore, and how radically different I assess my risks than most people. 

My sister (who should know better) claims she has been careful yet goes unmasked—and has caught COVID multiple times. “I guess I should’ve masked up” yet continues not to mask. 

One friend has traveled internationally to developing countries that lack vaccines for their citizens. She does stand up in small venues and doesn’t mask up. She goes to super spreader events & is the only one wearing (a poorly fitting fabric mask). “I gotta live my life.”

My office manager has done air travel this year & came to the office coughing & visibly sick 10 days before my surgery, yet never considered testing herself & staying home. 

 My life for the last 948 days has been work, medical appointments & judicious grocery shopping (off peak days/hours in store shopping, curbside pick up where available, and delivery for as much as possible). I get the rare pedicure during off peak early time of the day with an empty salon, and controlled road trips with my UV HEPA air purifier in tow. 

I am doing more than other immunocompromised people, and doing substantially less than COVID deniers. 

All this cognitive dissonance is reckless & devastating to witness, and only fills me with despair & feel even more isolated. It also fills me to the brim with rage & disgust.

I think to myself “how am I to manage being around these people once all this is really a thing of the past?” And then I laugh at myself and remind myself, “don’t worry, they never gave a shit about you, and they have already forgotten about you.”

Day 91 Making Microscopic Adjustments

Three days ago was my regular six month check up with my kidney specialist. All looks as good as possible. My kidney function has maintained and in some regards improved, though there is still damage to my kidneys from all those years before my PCOS diagnosis and the related obesity. 

Some days I start to get down on myself that I haven’t lost as much weight as I had hoped, but i look at my markets for fatty liver and how that improved, and I think of how my bypass has helped stop the kidney damage from progressing, and that is more than enough to keep me from spiraling further into ruminating on what a failure I am. 

Things I hope to improve are:

Glucose: 105

EGFR: 76

HDL: 56

LDL: 134

TRI: 140

I am hoping the combination of walking more now that my hip was replaced, and I am starting yerba mate supplementation today might help those numbers improve. 

Yerba mate is just a tool in the tool box and not a magic wand to make everything perfect, and I know ultimately a lot of my improvements (as always, with other issues) hinges on a commitment to change and consistency. 

Since I’ll be tracking those other numbers, I am putting my current LFTs herein as a baseline, to see if there is any negative impact to the liver function:

ALP: 92

AST: 27

ALT: 21

It took well over a year before my LFTs returned to normal after that unexpected turn/crisis after my first shot of Pfizer triggering a bout of acute hepatitis. 

Who knows? Maybe the yerba mate might be a mood booster too. It is worth trying, plus Maharajah had a bottle of it on hand. At the very least it is a choice to make, an item to check off on my “things I tried” list. Only time will tell if it will help me achieve my goals. 

Next time I see the kidney guy, will be in April. Six months is more than enough time to see if the numbers budge. 

To be continued! 

Day 88

Yesterday was day 88, but was too pooped to peck out the journal entry. 

Several years before my hip replacement, there was a day I spent in NYC where my footsteps were well over 10k. I remember it vividly today. VIVIDLY because my foot is killing me. 

I have plantars fasciitis & a heel spur & some soft tissue damage from what I call a catastrophic sprained ankle I endured in May 2019 when I tagged along on a business trip to Mexico. I am just thankful I didn’t snap my neck as the resort did nothing to make things right for me at that time; and here it is 3 years & 5 months later, and I am still hobbled by that accident. PS: Fuck the management at Nizuc! 

Anyway, yesterday was my regular six month appointment with my kidney doc—always a delight to see him. What a wild ride it has been the last 945 days. 

2020 I saw him in video appointments only. 

2021 I saw him in person, but no hand shaking. 

2022 I saw him in April and no hand shaking. I saw him yesterday (6 months later), and we shook hands. It was startling to me, and it seemed like such an intimate gesture after all we have been through. Part of my brain was saying “FUCK FOMITES!” and the other part of my brain ensured I sprayed hand sanitizer on my hands the first chance I got. 

So yesterday was like any other Columbus Day in the beforetimes: I had a double header of appointments scheduled, and even managed to go to the Neue Gallerie to visit the Klimt exhibits between my two appointments. 

I neglected to consider difficulties getting a cab due to traffic disruptions due to the parade. Maharajah kept suggesting getting an Uber and tbh my experience with Uber in NYC sucks, as they rarely pick me up at the door or location where I am, and I have to endure a game of “Where’s Waldo” trying to find the car. 

Time was of the essence and I just kept goofing it until I just gave up hope of hailing a cab at all—and in doing so, I hobbled myself like I did that last time. 

Every time I took a step with my right foot, it was as if I were driving a firey hot ten penny nail right into my heel. 

I had one more thing on my to do list, to visit one of the secret gardens in NYC (this one, at the Ford Foundation not far from the UN), but Maharajah but his foot down and made the executive decision to save it for another day. He got us an Uber, and I bruised my hip getting into it, and the driver drove us right past the building where I wanted to go. Perhaps another day. 

So good news is, my hip held up great during the 9K+ footsteps, but bad news, my foot really is demanding some relief. And I am reluctant to have surgery on it because the recovery time is much longer than for my hip, and it is my right foot which means  won’t be able to drive and do things independently. 

Today was a follow up with the surgeon as well as a PT appointment, and in both cases I had to emphasize my limping was due to my foot. Hip replacement was the project for 2022. I guess my project for 2023 will be my foot, though I am not sure how I will make that happen. 

Day 87

This week I had appts with/for trauma therapy, physical therapy, and a consultation with a psychiatric NP to evaluate possible meds to support me. 

Not much to report beyond the trauma therapist seems like a good fit & was a good listener & validating; and the consultation with the NP didn’t hear fruit yet. No meds yet. She is starting the process to get genetic testing pre-authorized to see which Rx might be best, though we did discuss possibilities, and I won’t be surprised if I end up on prozac. 

So in the meantime, I am still struggling with sadness, grief, rage, resentment, and panic attacks and dissociating—and just feeling profoundly alone and exhausted, and exasperated that no one seems capable to help me. And at the same time, I bristle at shreds of caring from others, and just want to push everyone away. I don’t want to grab their hands to help myself, as I am convinced I will only drown both of us as my emotional rip tide pulls us both under water and away from shore. 

Day 79

I am anxious and on the verge of tears pretty much all the time. I feel as if I were waiting for death. I wonder if this is what people who are terminal feel like, anxious, knowing the end is near, and feeling so alone in that discomfort, and knowing none of their loved ones can lighten that burden of foreboding. 

Day 78

I’ve been an insomniac my entire life, and have battled with night terrors since my teen years, so I can’t blame the pandemic for this; however, surely the pandemic isn’t helping things. 

I nodded off while watching tv last night, only to wake up to take my meds & use the toilet then be unable to drift off to sleep again. 

I nodded off briefly, only to wake up in tears saying to my mother, “if you have the ability to be anywhere, why haven’t you visited me even once? Why can’t we say we are sorry NOW? Sorry that we wasted our precious time together being angry or jealous or resentful? Why won’t you give me in death what you were unable to give me while you were alive?” 

My eyes are tearing up as I type this. What is it going to take to make me whole again? What is it going to take to make me stop sobbing each day?

Day 77 Slogging Away At Self Care

This past weekend I went for my first pedicure since my surgery. My feet were pretty messed up, and I wanted my feet in better shape because I had a Reiki session the next day, after which, I came home and dropped off into a 3 hour nap. 

All things regarding the hip are moving along. Still can’t cross my leg & externally rotate my knee to put on socks yet. Yesterday my PT ran me through my paces. 

So far I have lined up a therapist who allegedly has a focus in trauma based therapy. And a couple days ago I found a psychiatric NP who I hope will be able to find a Rx that might help me manage my C-PTSD. Therapy is scheduled for Monday 10/3/22 and the NP is 10/7/22. A plan will be devised to help me manage my symptoms. 

Plenty more to transpire before I return to the office on 10/17/22, more PT, a visit with my kidney doc, an EMG/nerve root conduction test on my shoulder & elbow, and yet another follow up with my surgeon to see how I am doing. 

I am still anxious, angry, and sobbing every day, and I am acutely aware how unprepared my husband and friends are, and how unable they are to help me. I feel like I am sinking further into the abyss, and all I am getting is “I’m sorry,” or “don’t say that” or worse, toxic positivity. Trauma doesn’t respond to any of this. 

Two things can exist simultaneously. I miss my mom, and my mom was the source of a lot of my trauma. 

Her death & the isolation I still am doing (within reason, after all I did say I went for a pedicure—just me and the shop owners and we were all wearing masks) makes me feel more alone than I am, and it is breaking my spirit. Pretty much my siblings have forsaken me, and mom’s sister too. I CBT the hell out of this and remind myself it is just as well as they all are continuing to catch and transmit this virus that killed mom. And I wonder if I am already a ghost. How easy it is for my family to continue on, and I am barely even an after thought. 

I am sobbing again. 

Day 71 & “Summer of Self Care”

I’m wondering what kind of timeline I should keep regarding my hip replacement—100 days? 365? 

Physical therapy went well yesterday. Only a couple more sessions, and then I’ll be on my own. 

Yesterday I broke down & revisited the neuropsychology group from which I was seeing one of their therapists from February until April before I decided to discontinue as the therapist I had settled on/for was only reinforcing toxic positivity and was doing nothing for my trauma. 

I called yesterday, again, out of a sense of futility & desperation, hoping they had someone on staff who has a focus in trauma based therapy—and they do—and I set up my initial appointment. This was also convenient as I didn’t have to register again, and they participate in my insurance. So here we go again—hopefully this therapist has the chops to help me. 

Meanwhile, I am still waiting on a call back from the behavioral health group at a hospital near me, as I would like a consultation with a psychiatrist to find out what my options are regarding medication that might help me in this process. 

This week I received an email regarding a “mandatory training” session which is scheduled for the day after I return to the office. The training will have everyone crammed into a conference room—which, coupled up with the lack of masking or improvements in air quality in our office, just is a formula for disaster. 

I have been ruminating on this all week, getting anxious and tense, about something that hasn’t even happened yet. 

I don’t like to share too much personal shit with my boss, however, I eventually relented and replied to the email and merely asked if I would be able to sit in on the training at my desk, and that I’ve been diagnosed with c-ptsd and being in an enclosed space with others is going to be a challenge for me. My boss replied, “Absolutely.” 

She further suggested I reach out to HR regarding special accommodations, and that will be my next step once I have set up an appointment with a psychiatrist.

Day 69

Just filled with despair. Again. Hip is fine but the c-ptsd is kicking my ass as always. 

The process starts all over again, to find the “pink unicorn,” in this case a psychiatrist and a therapist who are taking new patients, accept my insurance, and either are local to me or offer zoom sessions. 

The never ending calling, then waiting for return calls which go no where. The constant seeking out new names. Wasting more time. 

I have been over-stimmed and distressed recently as the 38 year old husband of my cousin died suddenly. I woke up this morning in tears, after having a nightmare where I watched a boat my husband was on capsize. I woke up in tears, and in the nightmare I was convinced he died. 

I wish it were ME who died. I don’t want to exist anymore.  

Day 64

Wow! 64 days since my surgery, and it has been a while since my last update. 

I’m still working from home & doing two  PT appointments per week. I am managing 2000-3000 foot steps each day. 

“Neuro-muscular re-education” is the goal. As many foot steps as I am doing, I am still unable to lift and cross my leg to put my socks on. 

Had my follow up with the neuropsychologist regarding my psych eval. Finally got a diagnosis. Unsurprisingly, it is C-PTSD (complex ptsd). PTSD is often only a singular event (like 9/11 for example), whereas complex ptsd is a steady diet of trauma.  

Apparently my cognitive abilities & language aptitude was classified as superior.

Surprisingly, I wasn’t diagnosed as autistic. Apparently the uncertainty & worry I have regarding “how long is too long to have a conversation,” and my belief that most people just are too polite to stop me, actually is not autism, but self awareness. And given how self-aware I am, that also ruled out narcissistic personality disorders. 

My problem is I have a great capacity for language. I don’t engage in small talk—which actually bores me. Too many people operate on the surface, whereas I operate from a place of depth. I overwhelm people. 

So next step for me will be a consult with a psychiatrist to explore medication options, and line up a therapist who specializes in trauma based therapy.