Day 29 of #Hysterecovery
It is important to always preface these posts with my awareness of how fortunate and privileged I am in this recovery process – I have good insurance, a warm & safe home, a supportive partner who is doing the heavy lifting, and friends with expertise to help me navigate the things I don’t understand.
It is equally important to say that healthcare shouldn’t require privilege to navigate. But …
So, one concern all alone has been how this surgery and recovery would impact my mental health. We knew I would be unable to keep my weekly therapy appointments for a stretch of 4-6 weeks. And to make things worse, my therapist left Persad Center so I was in the midst of transitioning to a new therapist when this ball started rolling. I’ve only met her one time in person. Not ideal, but we can work with this.
I spoke at length with my psychiatrist, Dr. Reise, about my gynecological health. He asked me a lot of good questions and we carefully reviewed the plan of action regarding medications potentially conflicting. I know I would have to stop a certain medication while I was on something else the surgeon would prescribe so we laid out a specific plan. He made sure I had plenty of refills in case my recovery time interfered with my next appointment. And he asked me to have all bloodwork sent to him. It was a productive and concrete conversation that left me better prepared for what might come.
My former and new therapists and I discussed the plan as well. We decided I would try to schedule a daytime appointment during my early recovery when Laura was home to drive me and also an evening appointment the following week. The hope was that I could resume driving myself soon after and pick back up with weekly appointments.
Then Laura and I had a frank discussion about all of this.
That was the plan.
My first bump was when the impact of not taking a psych med (to avoid an interaction with a surgery med) kicked in and disrupted my sleep. Sleep is my number one tool. Laura noticed it and said something to me. I was bitchy back to her, but I knew she was right. So I followed the plan and tapered off the surgery med and back onto my regular meds.
The bigger bump has been the impact of so much isolation. I expected to be home for at least two weeks, but some physical complications made it hard to go anywhere. Then the weather was a problem. I couldn’t take a walk around the block and I couldn’t drive somewhere that I could take a short walk. Factor in the flu fear and I was somewhat limited. My surgeon urged me to avoid crowded public places to minimize exposure to the flu (I have asthma) which would have been a nightmare.
So I’ve basically been at home during the day. I’m on social media which helps me feel connected. I’ve had a few visitors, but limits on my capacity to tidy up the room much less sweep, vacuum, dust, etc – that sort of social embarrassment is tougher than I expected. I had a few plans for outings, but the medical complications meant that I could not keep any of them. So Laura went with friends who stopped by to say hello which was great.
But I’ve been alone a lot more than usual and that has taken a genuine toll on me. I knew something was amiss when I had to cancel an appearance on the local radio talk show The Confluence because I was in pain. They were very gracious, but when they didn’t ask me to reschedule the next week – I got so, so upset and thought I had thrown away the chance to raise the visibility of AMPLIFY because of my stupid pain and on and on and on. I went to a very intense sad place that was disproportionate the circumstances. I did this with Laura, not the show people. But I was so sad, so upset.
The Confluence producer actually later reached out to me and told me that they didn’t want to pressure me to reschedule because my recovery was still a work in progress and I was definitely welcomed back.
So I had a miserable weekend with some really cruddy physical symptoms and this growing sense of gloom building up steam in my head. The thing is – I could tell it was happening. I had insight into my mental state. I knew I was struggling. So I told Laura and we developed a plan.
I rested more. I made an appointment with surgeon to address symptoms and it turned out I was right – something is slightly amiss physically, but it would be corrected with some medication adjustments. I called my psychiatrist who agreed to increase my anti-depressant meds for the short-term. Laura cleared her schedule to drive me to my therapy appointment (unfortunately, Mother Nature derailed that one, but I did attempt to go.) I called my orthopedic doctor and spoke with a terrific Physicians Assistant (PA) who gave me such great advice about how to treat my shoulder tendonitis under all of these constraints.
All of those things provided concrete help, but I also felt better taking steps on my own behalf to remain in charge of my own health, physical and mental.
No magic cures. The change in my meds made me drowsy on top of the fatigue that’s been my daily companion since surgery. Sleeping a lot is not the direction I was hoping to head. But I knew it was the med change so I just powered through. As I mentioned, the weather got in the way of my therapy appointment aka Pittsburgh freaked out during a snowstorm. So that was postponed a week, but I’m talking with my therapist via email and the phone just to stay in touch. I don’t know her very well, but I feel confident she can be a touchstone during this type of post-surgical struggle even without a lengthy familiarity.
I know this will lift. It is a reasonable side effect of the surgery. I’m aware of what’s happening so I can make good choices for myself.
But here’s the thing – some of this could have been prevented by my medical providers if they 1) were willing to pick up the damn phone and have a 5 minute conversation with each other and 2) they mentioned things in advance such as the impact of the surgery on my ovaries even though I kept them or the bump in anti-depressants if things got tough. They are doctors. I know they can’t foresee everything, but … its not like a hysterectomy is a unique procedure.
It is really hard to be your own advocate when you are struggling with post-surgical complications and looming depression, especially when you are dealing with three different medical systems. It is hard for your partner, who is working FT and doing 99% of everything around the house, to advocate for you.
If I had been able to bump my anti-depressants up on Friday instead of Tuesday, maybe I wouldn’t have been distraught about Super Bowl fried chicken and had a big unnecessary ridiculous argument with Laura. If I knew the change in the blood supply to my ovaries was going to give me hormonal surges, I could have considered what that might mean for mood swings. If I had been able to talk with the PA about the intersection of the inflammation in my shoulder and the inflammation in my abdomen early in the month, I wouldn’t have been so confused and worried.
The system could and should be better. I shouldn’t feel like my mh history requires me to preface every conversation with “I’m not looking for prescription pain medication, but here’s the problem …” Doctor’s offices should talk with one another when they are treating a patient with other chronic health concerns. Nurses should be able to reach doctor’s communications on the ‘MyChart’ portal so they can answer questions from an informed point of view rather than guessing.
I’m not out of the woods yet. I have to take a few steps back in the recovery phase to address this inflammation problem so back to no more heavy lifting, no housework, no laundry, etc. And that’s very hard to deal with mentally, mostly because I feel so guilty. I am in pain so getting out of the house to do anything social is still tough. And its cold. You probably noticed that one.
I’m very lonely right now, but I can’t really go out to meet people for coffee, etc. I’m sad about all of the things I’m missing. I’m expending a lot of energy making good choices (like not driving to McKnight Road to handle an errand) which is exhausting, but necessary. I will probably be like this for another 3 weeks, possibly longer depending on some medical stuff.
But I nipped depression in the bud this time and I will do so again. I will miss everything awesome thing if it means I’ll be healthier at the end of this game. I’ll live on sandwiches and pop-tarts because no doughnut places deliver (ha). I’ll eat and figure some way to get my hands on coffee creamer and Turner’s Iced Tea without having to walk through an entire store carrying gallon things.
And I will continue to speak out about my experiences because one of the most significant reasons we have these systemic problems is a lack of visibility about what people go through.
My heart breaks for those who have to return to work early in recovery because they don’t have PTO or they need to conserve it or even with PTO, they might miss out on meeting sales goals, etc. My heart breaks for those who have to stand or sit during an entire work shift without any choice in the matter. My heart breaks for those who have to care for children, parents, and others while not really taking care of themselves. My heart breaks because our society devalues women who no longer have reproductive capabilities even less than we do women in general.
It is hard to ask for what you need when your requests are denied. I keep asking people to drop off Turners Iced Tea and coffee creamer, but no one has because they think I’m joking. So asking your surgeon to please call you on a Friday afternoon because you think something is wrong? Asking your boss for just a few more minutes on your break because your body feels like hell? Asking your insurance provider to reconsider your appeal about coverage? Asking your preschooler not to cuddle because your entire abdomen is inflamed? Asking your partner to please do this one more thing on top of everything else extra they are doing?
Here’s to a healthier February. Please take the time to be blessing to someone struggling right now. It is one definite thing you can control.
ps: it ALWAYS a good time to drop off Turner’s Ice Tea …
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