“God wants you to have babies.”

In my last post, I talked about coming to terms with a procedure that would effectively render me infertile. I had made my peace with the loss of a choice to have children, and was actually looking forward to having minor surgery that would improve my quality of life. I made the appointment to have the pre-op conversation with my doctor and get the ball rolling, hoping to have this taken care of before Thanksgiving.

About four hours before my scheduled appointment, I received a call from my doctor’s office saying that my insurance wasn’t going to cover the procedure. That was frustrating enough. Then the office manager outlined the reason why … and I wanted to break something. My HMO is with a medical group run by a Catholic hospital – and because this is a sterilization procedure, they won’t cover it. “Fine,” I said. “I was hoping to change to a different medical group, anyhow. What about my other HMO option with Presence?” Turns out they’re Catholic, too.

I have been pretty lucky in my life not to have to deal too closely with the intersection of conservative social views and healthcare. As a woman, it has always been on the periphery of my awareness – but until recently, I have never had to do much with gynecology beyond my annual physical exams. So ramming headfirst into a restriction based solely on the belief that “women should make every effort to have babies” is incredibly jarring.

I don’t want this post to imply or turn into Catholic-bashing. There are some very dear people in my life that are Catholic, and are likely reading this right now. This isn’t about Catholicism as a whole. But I do believe that religious views, no matter the denomination or faith, have no place in the healthcare system – particularly when it comes to insurance coverage. I talked before about looking into patient advocacy as a career or at least a volunteer option. I’m feeling that pull again after this experience.

I’m planning to fight this decision. My doctor’s office should be calling me with more alternatives later today, and word on the street is that if it’s medically necessary (and it is) then the doctor should be able to override the restriction and get the insurance company to cover the procedure. So it’s not a done deal yet. But it made for some feelings of hopelessness and anger. A night of pizza, bad TV, and video games helped, and I’m in a better space today.

Just for fun, I will leave you with this brief snippet of an online conversation with my good friend, Jason, when I was filling him in on my frustrations. (Edited and posted with his permission.)

Me: According to the insurance guys my boss met with, if my doctor can convince the insurance company that my procedure is medically necessary, they have to grant it. So I am going to see about fighting this thing when I talk to them.

Jason: Good. Because “God wants you to have babies,” is not an acceptable response from an insurance company.

Me: I feel like I am in the Middle Ages or something.

Jason: Maybe you can use a course of leeches.

Me: That will remove the demon in my lungs for sure.

Jason: Good idea!

Jason: Oh, wait… You’re a witch.

Me: Crap.

Jason: So it’s probably best to go ahead and set you on fire.

Jason: Now, there IS a copay for that procedure…

Jason: But it’s cut in half if you use the generic equivalent!

Me: What’s the generic equivalent of “burning at the stake”?

Jason: I’m glad you asked.

Jason: The generic equivalent is actually just like burning at the stake, only you have to hold very still all on your own. So it would be better to refer to it as “burning” rather than “burning at the stake”.

Jason: Of course, you could bring your own stake, if you like.

Jason: We’re committed to providing you with an excellent execution experience.

Me: What if I spelled “stake” like “steak”, and just burned that, instead?

Jason: That would be fine, too.

Jason: But to be clear, we’re still setting you on fire.

Me: Crap.

Finding Beauty in Fraying Threads

The healing process continues. My energy level is mostly back to normal. I still have up days and down days, but I seem to be reaching an equilibrium where every day looks pretty much like the day before. My leg is still swollen from the clot that is stubbornly sitting there, taking its sweet time to dissolve. I still get short of breath sometimes, but nothing remotely close to the symptoms on the day of The Event.

Now that I am pretty much stable, I have been able to do some more exploration into why this whole thing happened and what I can do to prevent it.

One of the most likely causes was the fact that I was taking birth control pills. I say “most likely” because we’re still not entirely sure that was the primary reason. I also tested positive for a genetic mutation that makes me more likely to form blood clots. (It’s apparently extremely rare. I’m very special.) I am hoping beyond hope that it was the birth control, because that means that I can stop taking the blood thinners after 6 months and be done with them for good.

I wasn’t taking birth control to prevent pregnancy, although that’s a really handy side effect. I was taking it to control my period. My apologies to those of you who aren’t in to reading about menstrual issues — skip to the next paragraph if that describes you. At the end of 2011, I bled for 35 days straight. No let-up. The only thing that stopped it and brought me back into balance again was the birth control. And now, I can’t take it. I have bled since The Event, and the blood thinners aren’t making that a pleasant experience, but at least my periods have stopped when they’re supposed to. I don’t trust that luck to continue, however, and my options for resolution are limited.

I’ve been talking to my gynecologist, and the option that I am going to go with is called ablation. It’s a fairly simple procedure that destroys my uterine lining so I won’t bleed. It also essentially makes me infertile, since there’s nothing for a kid to hang onto or get nutrients from. Pregnancy is still possible, though — which would be dangerous for both me and the baby — so once I have healed from the ablation procedure, I’m getting another procedure done that’s similar to getting my tubes tied, just much less invasive. The nice thing about all of this … I get to keep all my parts and my quality of life has the potential to improve tremendously.

The doctor asked me over and over about my plans for children. I assured her that I don’t want to have biological children, and if I did change my mind, which is unlikely, I wouldn’t be averse to adoption or surrogacy. My token line is, “I am an awesome aunt. That’s good enough for me.”

And yet… I am still struggling with this. It’s not that I want children. I really don’t. I love kids – but I value my freedom and independence more. I am single mostly by choice, partially by circumstance. When I was much younger I thought I might want to raise a family, but that shifted around my late 20s. For most of my adult life, I have been childless by choice. So why should this change be such a big deal? I don’t want a kid, now I can’t have one. No harm, no foul, right? … Right? 

So why does this feel like such a big deal?

Maybe it’s the stigma attached to a woman who doesn’t want to fulfill her what society might call her “biological imperative.” Maybe it’s the continuing sense that I am being left out of a club. Maybe it’s residual guilt that I feel like I should want kids. I come from a big extended family that’s pretty tight-knit, and I am the only unattached, unmarried, childless cousin over the age of 20. There are 14 of us – so I feel like an oddball at family gatherings, even if I get to be the cool aunt who lives in the mysterious land of Chicago miles and miles away.

I really don’t know. It’s probably a combination of all of the above and some things I haven’t even considered. I don’t even think it’s worth trying to find the true reason. It’s just enough to know that I am sitting with a loss, even if that loss is something intangible that never existed and will never come to pass.

But honestly? Deep down, the loss that I am mourning is the loss of choice rather than the loss of a potential child. When I was young, I felt threads of possibility reaching out in every direction. And I still do, to some extent. But I am finding growing older to be a little like fraying cloth. Some threads just aren’t available to me anymore. That doesn’t mean the tapestry or rug or whatever-metaphor-you-want-to-use isn’t or can’t be beautiful. It just means I have more limited options on how to create or sustain that beauty.

The key word here is “create” — because even though I won’t ever give birth to a human being, I will continue to give birth to projects, music, art, friendships, harebrained schemes, and rituals. I will breathe life into experiences and ideas and stories and songs. Creation is a pretty multifaceted gig, and I feel like I have been given a second chance at life in order to make a number of possibilities come alive.

Breathing, healing, and dreaming.

The power of a new perspective

I suppose one of these days I will get back to blogging about things that are completely unrelated to my health, but today is not that day.

One thing about the new doctor that I dislike – she is not very prompt about getting back to me with my INR results. This is the second week in a row that I have had to call to pester her for them, and I hate the idea that I might be labeled “a bother.” But then again – this is my body we’re talking about, and learning to be my own advocate has turned out to be an incredibly valuable gift from this process. Luckily, my pestering paid off. She finally returned my call to let me know that I am not only back in the therapeutic zone – I am smack dab in the middle of it, which is perfect. Now the Coumadin can get to work dissolving these clots like it is supposed to.

Before I made it back to the therapeutic level, I was struggling. A lot. I had the good fortune to talk to a friend of mine who is not only a lovely and supportive human being, but a professional nutritionist as well. I was so grateful to her for the compassionate way she answered my questions and validated that I was doing what I am supposed to do.

One of the best pieces of advice she offered me may seem like such a minor adjustment – but it had a major effect. She encouraged me to think of getting my INR results not as a blood test, but rather a blood check. I’m not being graded on this. And therein lies the problem. Every time my INR has fallen below therapeutic level or isn’t getting there fast enough, I feel like it’s all my fault. I feel like a failure – when the truth is that there are so many other factors that affect how Coumadin functions, or how Vitamin K works in my body. I just need to figure out what works best for me and stick with it. And like every other learning process, that takes time.

Language has a weight to it. Words have power. I know this. I study this. I teach this. But I do occasionally get thrown off-guard by their impact. I am continually fascinated by what a simple act of reframing can do. It makes me wonder what other stories I am currently telling myself that could use a language shift or minor adjustment, and what new perspective that shift could open up for me.

Ah, growth opportunities. Can’t escape ‘em.

Wouldn’t want to.

“I love you, leg,” and other weird things I am saying lately

Ah, the trials and tribulations of being on blood thinners. I hit the therapeutic INR level last Friday, which is fantastic, but then on Tuesday it had dropped back below 2. Coumadin is a tricky, tricky drug. I am a little nervous about it fluctuating this much, but the doctor seems to think that it will be okay eventually. I am going to trust her. My prayers these days are for equilibrium more than anything else.

I participated in an online distance healing event at a friend’s suggestion. I am no expert on Reiki or really any form of nontraditional healing, but I am not the type of person to turn down help or support, no matter what form it takes. One of the things that the facilitator suggested after the session was to create a talisman that would remind me of my intention and goal for the healing process and outcome. I make jewelry, so I have a ton of spare beads just waiting to be used. I rummaged through my collection and found a few with words on them. I reached in the bag and picked three at random and got: “Feel”, “Self” and “Love”

Well, then.

I now am carrying a leather cord in my pocket with those three beads strung onto it. I reach into my pocket now and again, and remind myself that healing takes time. That I am supported. That I am loved. The trick is to provide the same level of support and love to myself that I have been feeling from my networks of friends and family.

This is a particularly difficult challenge right now. I am trying to follow doctor’s orders and do everything I am supposed to do in order to prevent a recurrence. But it is clear to me that the root of my motivation is fear rather than love. Here are some irrational thoughts that keep spinning through my head:

My body tried to kill me. I don’t trust my insides right now. What was that twinge? Why is my heart beating too fast? When am I going to collapse again? I’m feeling light-headed, so therefore I am about to die. I am never going to get better. How can I be more active when there’s a blood clot waiting to move to my heart? My body tried to kill me.

This kind of talk isn’t helping anyone, especially me, and it’s just serving to increase my anxiety levels at a time where I really need to relax.

I am scheduled to teach a path/class next February which will have a major focus on self-love and being conscious of being in the present moment. When I agreed to teach this work, I was thinking more along the lines of perception and emotions rather than physicality. This health scare experience is opening up an entirely new way of viewing my relationship to my body and self-love. It’s not about loving myself so I can be more confident and move through the world with a greater sense of ease and openness to sharing love with others (while an absolutely worthy goal) — it’s about loving my body despite the fact that I am currently afraid of it.

My new doctor (who is wonderful) joked that now that I’ve been through something like this, I will be calling her every time I have a runny nose. And it’s true that every twitch or twinge or discomfort has me worried that I am suddenly going to collapse and be taken back to the hospital or something worse. I am attempting to reframe those twitches and twinges as signs that my body is just trying to communicate with my brain to let me know how to adjust so I can be more physically in balance. So the current focus of my personal work is to attempt to consciously love parts of my body that I am afraid of.

Admittedly, it’s a little strange to say, “I love you, right leg.” But I am doing it. Saying it enough might even make it true. It’s even stranger to say, “I even love the blood clot you’re currently holding, because it reminds me that life is sacred and therefore needs to be lived fully.”

It’s a work in progress. What a gift to be alive to work on it.

Thoughts on Impact

Recovery continues slowly but surely. I still (as far as I know) haven’t hit that magic “therapeutic level” of blood thinness, but I am still managing to get back to life as usual. I am at the office for the second day in a row, and that feels good. I never thought I would be glad to get back here… but the fact that I can sit at my desk and feel pretty normal is something I am not taking for granted.

I met the new, in-network doctor this morning, and the majority of my fears have melted away. She’s wonderful. Very accessible, smart, funny, and really seems to have a handle on what to do with my treatment. She took the time to answer all my questions, and I feel pretty comfortable with her. I will still probably change networks to something closer to my house when I get the opportunity, but for now – I think I am going to be okay. I can’t tell you what a relief that is.

The truly amazing thing that happened today … on my way to see the new doctor, I happened to pass the woman who had witnessed my collapse and called 911. She was out walking her dog again while I was driving by. I stopped and called out to her, and she recognized me instantly. She even remembered my name, which was pretty remarkable.

How often do you get to tell someone that they saved your life, and mean it literally? She was getting goosebumps, I was shaking. The moment was heavy and joyous at the same time. I am so glad I got to express my gratitude to her. I was so taken by the moment that I forgot to offer to bake her cookies… or hell, a 7-layer cake. (I think saving someone’s life is cake-worthy.) But we’re neighbors, so I am sure I will be able to be more present if I see her again and offer to shower her with baked goods.

I am continually struck by the impact we have on each other’s lives – even, as in this case, the lives of total strangers. It is making me much more conscious of how I move through the world, and how I choose to interact with people. A call to 911 might seem like an obvious way to have an impact on someone’s life … but the woman who saved me thought I just had low blood pressure or something. She was shocked to hear that I spent six days in the hospital and very nearly died. It just reminds me that every action or choice I make has weight to it, whether that’s a smile at a store clerk or giving direct feedback to someone I care about – and that feels like both a burden and a glorious obligation to be fully aware.

Food for thought as I sit at the desk in my office. Breathing fine. Pain free. Alive. All thanks to the kindness of a complete stranger.

Plot Twist, Part IV

I have been home for about four days now, and each day I get a little better. I feel my energy slowly returning, although I do have moments where it’s clear I need to take it easy. The home health nurses have visited, and my vitals are all normal and stable, which seems to bode well. I am following the doctors’ instructions to the letter, and hopefully, things will continue to improve.

The frustrating things right now are a) I am a super-bored and under-stimulated extrovert, b) My blood thinness level (or INR level) is not getting into the therapeutic zone very fast, and c) my insurance company continues to be a source of stress.

Fixing problem “a” will just take time. I have friends I can reach out to, and hopefully can sweet-talk them into more visits, boardgames, or Netflix. I am sure I will get back to my social-butterfly norm soon enough.

Problem “b” … I am extremely frustrated by this for a few reasons. One, I just want to be done with these damn Lovenox shots. They hurt like hell, and I will only have to take them 2 more days once I hit my level. And when it comes down to it, not being at the therapeutic level just makes me feel scared and unsafe. I know I am not completely safe even when I hit the therapeutic level, but there’s something about that number that feels like additional security. But… trying to find a silver lining here … if it’s taking this long to get me to the right level, then chances are my blood won’t modulate that much once it does get there, and I can hopefully stay fairly stable for the duration of my time on blood thinners.

Problem “c” … Just a few short hours ago, the home health nurse that has been managing my case called and said that my insurance company no longer considered me “home-bound,” and was therefore canceling my home health visits. All further tests needed to be in a lab. Technically, true. I actually drove to the office today to pick up some work so I can ease back into my job. However, they called way too late to allow me to set up an appointment to meet my new doctor and get an order for the lab, and after a couple increased Coumadin doses, I need to be tested tomorrow. I spent a good hour on the phone with about 10 different people trying to figure out how the hell I can get tested and who could do it. I just kept getting passed from person to person with no real results. Finally, I took matters into my own hands and called the insurance company and somehow talked them into letting me have one more home health visit, then go to my primary doc on Friday. Miracle of miracles, they saw reason, and I got my wish. There might have been dancing in my living room after I pulled that off. I can neither confirm nor deny that fact.

I am so switching to a PPO as soon as humanly possible. That way I can keep my gynecologist and go to the doctors that know me and my case. I hate the health care system in this country so much right now. And yet… I am not balking at the fact that they are paying for what is likely a horrendous medical bill. Mixed blessings, indeed.

Meanwhile, this whole experience has me thinking about where my life will go moving forward. I still haven’t given up on what I feel is my work in this world – to provide experiences for others. And I have a couple new and emerging outlets for that sort of thing. But I am also feeling a pull towards exploring patient advocacy as a potential career field. It might be a way to channel some of the rage and frustration I feel in dealing with my own insurance debacle into some constructive energy that can help someone else with less of a voice. It’s an idea that keeps floating to the surface of my thoughts, so it might be worth checking into, at least.

I think this will be the last blog post in this series for now. I’m sure there will be more hoops and hurdles to talk about as well as victories and blessings. But I feel like I am ready to release this particular chapter and see what the rest of my story holds from here on out.

Before I leave the topic entirely, I just want to acknowledge the incredible support and love I received from folks near and far while I was in the hospital. There’s no way I can thank everyone who sent a note at just the right moment, or visited during a time when I really needed the company, or held me in their thoughts while I was struggling. I tried to get back to as many people as I could, but I know that I missed some. If you are one of those people – do not mistake my lack of response as ingratitude. I still read the list of Facebook comments on my initial announcement about my hospitalization each day. It may seem like a trivial thing to comment on a status, but those saw me through some pretty dark moments.

Never underestimate your impact.

Plot Twist, Part III

The continuing story of my recent hospitalization and health scare. Part I is here. Part II is here.

Let’s do a thought experiment for a moment. Say you are a health care provider, and you have a patient who just faced a life-threatening episode like… oh… let’s say a pulmonary embolism. She is in the hospital, and has been there for four days – one of those days in Intensive Care. Her case has been discussed in detail by a team of lung and heart doctors, all of whom have come to consensus on her treatment plan. She is currently in the Telemetry Unit, where she is being monitored very closely and is getting consistent tests and medication. 

Got all that? Okay. So, would you:

a) Keep monitoring her carefully to ensure that she returns to health as smoothly as possible, under the watchful eye of a medical team that knows all the details of her case.

b) Transfer her to a different hospital on the opposite side of the city where she has never been, and give her over to an entirely new set of medical professionals who don’t know her case at all, and could dramatically change her treatment plan if they wanted.

If you answered “b,” then you likely work for my insurance company. 

The great thing about HMOs is that they cover a larger percentage of your medical bill, and they are a bit cheaper than PPOs. I am all for both of those things. The downside is that in order for them to cover you – you have to remain in-network. When I collapsed, I really didn’t have a choice to go to an in-network hospital. The paramedics took me to the closest one, which happened to be St. Francis. My insurance company is cool with that. If it’s an emergency and you’re admitted, there’s not a whole lot they can do. They’ll cover it, even if it’s out of network. But… my stay got longer and longer as my blood refused to get thinner. And once I was stable enough, the case manager at my insurance company started to insist that I get moved to an in-network hospital, despite the fact that the doctors at St. Francis understood my case intimately. I was furious. And that didn’t help my blood pressure, or my ability to recover smoothly. 

I was assigned a social worker, who rocked the house. She did everything she possibly could to try and convince the insurance case manager that I shouldn’t be transferred. She offered all kinds of options, including one of the more common ones — discharge me and let me be at home and be monitored by home health care nurses. I would have to give myself subcutaneous shots twice a day, but that would be small change compared to having to go to a completely new hospital with a completely new treatment team. The case manager was having none of it. My social worker was at her wit’s end. She told me several times that she had never experienced this level of pushback from anyone before. I got more and more disheartened as the battle continued. Finally, my social worker had to give in to the insurance company demands, and I was scheduled to be transferred as soon as a bed at the other hospital opened up.

Why don’t I have my HMO set up with the hospital that is closest to my house, you ask? My gynecologist recently changed networks, and she was fixing another problem I was having by means of the birth control pills. I really like her, so I wanted to follow her. I hadn’t set up my new primary care doc yet – which is something I now realize I should have done immediately after changing networks. (You may recall that I have been somewhat lackadaisical about my health care up to this point. No longer.) Now, those birth control pills are trying to kill me – and I am looking at recovery maintenance with a doctor I have never met. I don’t anticipate it will be too much of a problem once I can get situated, but it’s a level of stress I really didn’t need. Once September 1 rolls around, I can change my primary care doc back to the ones who know my case – so I only have a few weeks to juggle things around.

So for about 3 days, I was on edge, wondering when the dreaded call would come in from the other hospital saying that they had a bed open. It was entirely possible that they could call at 3am, and the ambulance would come for me in the middle of the night. The folks at St. Francis thought it was ridiculous, but they were ready to comply for fear that my insurance company may not pay my bills otherwise. 

The blessing in all of this turned out to be that Telemetry beds are hard to come by. One never came available – and my social worker finally talked to a manager who saw the light and approved my discharge with home health care. I had to wait several hours before I could be released, thanks to my injection schedule – but I didn’t care. I was going home! This is me within a few minutes of getting the news:

Image

(One of my friends mentioned this also doubles as my “This… is… SPARTA!” face. I approve.)

I mentioned in an earlier post that I went without health insurance for many years. I have lived in Chicago for about 12 years now, and I would say that I have only been covered about 4-5 of those years. I can’t say that I enjoyed not having benefits, but as a reasonably healthy young adult, it seemed risky, but not fatal. Now that I am looking 40 in the face — I may hate my job, but I am very, very glad that I have health coverage. My boss may be crazy, but she also has these moments of pure, jaw-dropping generosity … and she is paying me for the time I have been off. Considering I am still not back at the office and am somewhat in limbo about when I will return – that is a huge gift that I will not take for granted.

So while the insurance debacle was a huge source of stress during my final days in the hospital, I am also aware of what a major privilege it is to have it. I can’t begin to imagine what I would be going through now if I had to face those bills. I don’t even want to contemplate it. 

Coming soon: The road to recovery and thoughts toward my future.