The anxiety that held me tightly while my grandma was back in the hospital with organizing pneumonia, resulting in my (still ongoing) project of sorting through and throwing out a great deal of my things is largely different from the anxiety that bothers me during PMDD. I think, in part, the increase in depression and return to pre-medicated-thinking has a lot to do with it. I am paranoid, I feel worthless.
My intentions were to ask my gynecologist about PMDD and potential treatment along the lines of what I already have, as I am disinterested in playing “find the hormone that works.” I also meant to ask what it is about me that makes me required to seek yearly visits, instead of every three years — sensibly this would be the low AMH and noting hormonal changes otherwise, but it was never specified to me. A few days before the appointment I was called and told to reschedule. Phone calls are…difficult, so when I did end up making it and getting sent to voicemail both times, I just gave up. I should be able to do everything online at this point, honestly. Uncertain how to proceed. Uncertain about bringing it up during my next appointment with my primary doc, especially when bringing up Linburg-Comstock is now on the list, and time is short.
Anxiety drives me to take action. When I am unable to do so, there is very little stopping me from being dragged down into the mud and grime of depression. I owe folks a lot, but am running on what is essential to get through a month in terms of money. A better course of action would be to take care of the things I can at least send out, and worry about refunds later. It has been put off for a couple years now, I’m certain folks have given up hope. My intention is not to do the same, although I doubt I will ever shake the feelings of failure and guilt.
Having taken medication again, I was too anxious while the pills were out to count them and determine whether or not I can make it to April. As I write, and as medication sets in, I feel less concerned about it. While there will be two more guaranteed peaks of PMDD anxiety prior to the appointment, and a number of breakout days, the number should be adequate.
One thing sitting on the forefront of my mind has been the “what now” following the realization that I am dealing with Linburg-Comstock, and that it is problematic to me. Even without a name, it seemed unlikely that the bouts of inflammation and significant pain would resolve on their own without surgery, and surgery is something of a dream given financial situations.
Which reminds me that BCBS sent me another packet I should peruse before I forget. I feel as though they’ve sent me a few recently, but perhaps this is the one that outlines this year’s coverage and costs. Yes, this is the one.
Poking around their website to determine costs and locations of centers within my “network,” I am looking at an estimated $8700 for surgery. This falls in line with the coverage listed under outpatient services, either the hospital covered service (50% of eligible charge), or outpatient surgery ($600, then 40% of the eligible charge). The fact that tendon repair is often outpatient is spectacular, but it puts me at a disadvantage in terms of what will be covered by insurance. Working with $1k a month to pay my bills, this is impossible to pay, and fighting to get it down to a number I can pay monthly for the rest of my life will be tumultuous.
There is a certain irony to go along with this. I am not suitable for most jobs, and those that I am pay remarkably little while also increasing the likelihood that a tendonitis and/or tenosynovitis flareup occurs. I do not mind the idea of retail stocking, but it does a number on my wrist. I can deal with whatever knee pain comes along, I have the tools to alleviate that. Working from home on things I want to make also exacerbates inflammation occurrence. Funny. Either option would not allow for the saving of $8700, but could take the edge off monthly payments. No retail job will allow me six weeks of recovery time. It is truly a damning situation.
My intentions for writing the post originally were based off some information I’d stumbled upon earlier that night that would potentially send me down the correct path of “what is wrong with me?” The idea was that the issue was related to synovial tissue and this may actually still be correct, with the inflamed tissue being synovium — synovial sheath surrounding the tendon, synovial covering of tendon, synovial caverns composing this. Synovial has now become a word that does not exist.
The pain itself may be caused by tendonitis or tenosynovitis. I personally am unable to determine if the pain and inflammation is of the tendon itself, the synovial sheath around it, or both. So although I was ready to clamp down on the more-fun-to-say tenosynovitis, I cannot use it with certainty, so I will use both, or either, or just refer to it as inflammation. It is certainly one, either, or both, but which one eludes me — I do not have the correct information, education, or experience to truly know.
So we are back to the “what now?” portion of things. Even considering my past assumption that surgery would be the answer was correct, now that I have a name to it, it almost seems like an option I would like to actively pursue instead of considering it a far-off ‘maybe’ now. There’s a certain excitement to that, honestly.
But there is far more to consider when it comes to the approach. I am uncertain how to phrase any questions I do have, and for that matter where I should start looking. If the center nearest to me that is within what my insurance will cover is not directly linked to AMITA (whatever it will turn into now that it has split into its components again), I worry about information and followup being done at two separate places, I worry about loss of information somewhere along the way. I suppose expressing those worries and getting a deeper understanding of how it works would alleviate some concern. There is a lot I feel needs to be discussed leading up to options. Of course there is always the possibility that Elmhurst will have a less obfuscated system in place to work all this out than AMITA feels determined to have. Or has had.
Another question is whether this comes at the referral of my primary doctor, or if it is something I have to seek out myself. Again I will face the barrier of places believing that being completely accessible online is nonsense.
I am sorely tempted to reach out to places that will not be able to help me for reassurance in any measure. A subreddit somewhere, maybe. I know the answer will be to talk to my doctor first, and then I am left wondering whether to put this off until April or to make another appointment. The condition is not going to go anywhere and the pain I feel currently is certainly not the worst it has been. LCS will stay, the pain may go, it may return. As something I have either dealt with for my entire life, or something resulting from an injury 16 or 17 years ago, there is nothing driving a resolution to it immediately aside from my anxiety demanding it.
Bouncing back into a more sensible realm, as I need to, it being an outpatient procedure under local anesthesia offers the exciting possibility that I can watch the surgery. Whether this is through awkward positioning of myself or with mirrors, cameras, whatever, it does not really matter. I would absolutely love to see the grotesque mess of nonsense that is my tendons, and it would be deeply satisfying to see what I could consider a ‘foe’ get removed. Even looking at potential complications does not sway my opinion on having it done, and if the pain is not wholly relieved I believe that it will at least be in some part, and that is a mental relief that makes life just a little bit more worth living. In theory, it could free up a massive amount of trepidation for work.
This, having something to focus on when my mental health is at its lowest, it helps. It distracts me for a while from the unshakeable feelings of inadequacy and removing myself from an option for work due to my irresponsible actions, it removes me from the overwhelming sensation that people I considered friends have been swayed into thinking the worst of me by someone who wants my blood.
And yet I find myself laughing at this idea right now. Anxiety meds are a wonderful, wonderful thing. Honestly, who cares? Life will move on, new folks will fill the spaces the old have left behind, if they really have. I just dare not show my face again until I have corrected the problems I created. And correction is something I will do.
My ability to focus has faded somewhat as the medication acts. This is typical, and I have written a number of pieces as it takes me away noting this. It is troubling to try to recall my questions following the “what now” realization, however. It feels as though something has been left unsaid. Perhaps stating them more plainly will reopen those thought paths.
I inform my doctor of the presence of LCS with me, likely making some joke about how well-received self-diagnoses are. Given it being undeniable (and I do mean to write more about it, just that the mental state did not allow for it this morning), I do not have many particular concerns about being “that patient.”
Asking about how to proceed, whether this is something he can refer me for or at least send me in the right direction, or if this is something I seek the appropriate people out for myself.
Mentioning concerns of information, perhaps asking how that is processed between these locations.
Ultimately, what do I do? It seems I’ve made my mind that surgery will exist at some point in my future, as it seems too great an option to overlook for the duration of my life. Freeing myself, freeing my tendons, seems an achievable, relieving possibility instead of an abstract thought.
Many of my post-surgery questions will be ready provided the path opens and I can start down it. There will be recovery in the way of physical therapy, most of which it seems I can do myself — keeping the tendons moving. Then there is also wearing a cast for at least six weeks. Whatever information I could find suggests the cast in question contains a ‘claw’ or ‘scoop’ shaped end around the fingers. I find this amusing. And as I have switched to doing a number of things with my left hand in the past, I am not concerned about learning to do other things with it. In theory I would have time to take note of what I use my right hand for and practice ahead of time to make the recovery time a bit easier, the only concern would be follow-through on my end with that practice. It is also essential that I prepare ahead of time for any care for my geckos. Handling will have to lessen except with those I can comfortably corral with a single hand, although some may miss the hand-jumping exercises we partake in. It should not be difficult to get them back into that practice following recovery. Similarly, it should not be too difficult to regain trust otherwise. Misting is a big one, but one that is already problematic. Using the mister I have is tremendously strenuous as is, so a sprayer such as this, or this has been something I have been meaning to get. Otherwise any preparation to their environment can be taken care of ahead of time.
Surgery is ultimately something I can plan for. I see Dad having some amount of stress at the idea of staying out of the house through the duration of surgery — we both worry about Grandma — and the amount of time driving to and from seems to fall in that vein as well. I think it will be okay.
Out of curiosity I went back through BCBS to see if I could find something more specific and reread what the surgery I initially looked at included, and it was assumed an inpatient procedure. For comparison, I looked into an outpatient tendon surgery (the only I could find was carpal-tunnel related, but…close enough). These costs are generally closer to $2000, but have up to $7000. I will have to take a look through these locations, but this is ultimately not something I can truly estimate.
It’s funny.
According to a variety of studies, occurrence of LCS is estimated to be present with ~30% of the population, with ~20% of those having it having pain related to it. These seem like relatively high numbers for it not to have been studied more extensively, for information for it to be difficult to find, and to not have any clear indication of surgery for it being available.
These other locations that BCBS covers under outpatient are much closer to me, which alleviates the stress from being out of the house for so long.
This suits some degree of my need to take action immediately, and leaves me with much more to read about and look into. I lament the lack of proper videos of the surgery itself, although appreciated the short clip I could find of the surgeon pulling on tendons to show how it works.
I think I will retire for some time now. Hopefully can sleep better.
