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.