“There’s still a part of me that still feels like I must be faking all this kidney stuff even though the pain and prognosis are real. I guess it’s denial? Like OK, I’m done being sick. But then my body says, I don’t think so, buckaroo’ and my side starts hurting or my hand goes numb or I have to rush to the bathroom.“
When you can’t see what’s wrong with you the same way you can see a broken bone, or a cut, or even a runny nose, it’s easy to wonder how real it all is. Sometimes my brain tries to tell me that I’m just imagining my health issues.
Last Saturday, some friends were visiting and I felt fine. Being sick has meant being less social, and I’ve missed it. When they left and the adrenaline rush had worn off, the pain and fatigue came back to the forefront. I was glad I was already in my recliner and could just lay my head back and rest. I had to remind myself that I’m about to have major surgery, and I’m not as healthy as I think.
But the voices, man. They are so mean. They like to flash memories across the movie screen of my mind, of people saying things like, “you act like a big baby” or “you aren’t as bad off as other people” or “you are just being lazy.” I feel like I’m inconveniencing people by being unwell and that maybe I’m purposefully being sick just so I to shirk my responsibilities.
I still feel like I should be able to just “shake it off” and get on with my life. And in short spurts, I can. When that happens, it’s magical. I love being out and about and acting mostly normal. But sometimes being out in public is when I feel most like an impostor. For example, a well-meaning friend came up to me at a convention recently and said,
“You look so much better than I expected based on your Facebook posts.”
I didn’t know what to do with that.
“Thanks,” I replied, “I guess it’s because I’m wearing make-up?”
Again with the voices telling me I’m just a big faker. I ended up spending most of the next day in my hotel room, throwing up and generally feeling miserable. But of course, I wasn’t inviting people in my hotel room to see me like that. Instead, I felt guilty for not being more sociable.
Sometimes the hardest thing to do when I’m sick is to believe myself. I’m trying to work on that.
In the TV show The Golden Girls‘ 2-part episode titled “Sick and Tired,” Dorothy knows she isn’t well and goes to doctor after doctor, only to be told there is nothing wrong with her. When she pushes back, a few of the doctors tell her it is because she is old, or depressed, or lonely, or because she needs to get her hair done. She consults a specialist in New York, hoping for answers, and he tells her more of the same, and also seems exasperated with her for wasting his time and her money, because his other patients have real problems, unlike her.
Dorothy begins to doubt herself, but the rest of the girls tell her that they agree with her, and they can see that she is not well, and in desperation she brings the findings to her friend and next door neighbor, a pediatrician, who knows her well enough to tell there is something wrong, and sends her to a doctor who believes her and tells her she has chronic fatigue syndrome.
Dorothy is relieved to finally have a diagnosis and to know she is not crazy. They go out to celebrate, and while there, she sees the specialist in NY and confronts him about his dismissive attitude of her.
A quick google search will reveal that this 2-part episode resonated for many people. Inspired by the true illness of the show’s creator, Susan Harris, it is perhaps one of the most powerful story arcs for Dorothy, and something that I think about all throughout my health challenges.
Thinking about it this weekend, I realized some of the most important takeaways (for me) from this story:
If you don’t feel well – see a doctor. I know people who are scared to go, afraid of what the doctor may find, or not find. Being sick may make you feel powerless. Knowing why you are sick gives you back your power because then you can come up with a game plan.
If the game plan isn’t working, get a new game plan. If the doctor you are seeing suggest treatments or medicines that aren’t working, or tries to dismiss you, get a second opinion. And then a third opinion. And all the opinions and tests and treatments you need until you are well.
Be your own advocate. Walk in to your appointment as prepared as you can be. If you don’t feel heard, repeat yourself. If they don’t listen, find someone who will (see #2). There was a moment in part 2 of the episode that struck a chord with me. When the specialist recommended that Dorothy see a psychiatrist, she pulled out letters from the two she had already seen stating that they believed her condition was medical, not mental. Even though he dismissed their findings, I loved that she had done her due diligence and proved she had tried standard treatments before pursuing things further. (I am already working on a blog to discuss some of the ways I’ve learned to become my own advocate.)
Create a support team of friends and family. You do not need to go this alone. When Dorothy goes to see the doctors, her mother often accompanies her. When she sees the NY specialist, she brings Rose. Having a second person at your appointment is a second set of ears and eyes to help you remember what is said and a second voice to ask questions. I also make it a point to keep key co-workers and friends informed of any pain or issues I may be experiencing, and any medications or treatments I may be utilizing, just so that someone is aware of what is happening in case I am unable to communicate for myself.
If you haven’t already seen “Sick and Tired,” please go watch it (I found several copies of the episodes on YouTube, for starters). Remember that it was taped in 1989, so please recognize there are some cringe-worthy comments in the show (mostly said in the third act by Sophia). So take that with a grain of salt (or sodium-free substitute). If you have seen it, but it’s been a while, don’t be afraid to watch it again. Whether you are a doctor, a person struggling with illness, or just a healthy bystander – thank you for being a friend. And if the theme song is now in your head, I’ve done my job.
You may have seen them on TV, these small sensors that diabetics can wear on their arms rather than having to poke our fingers 3-4 times a day to check our blood sugars. They are called continuous glucose monitors (CGM) and I want one.
To be clear, it’s not just because all the cool diabetics have them (I’m looking at you, CS). It’s also because along with the 3-4 finger sticks a day, I also inject myself in the stomach another 3-4 times a day with insulin, and for my kidney surgery I will also be injecting heparin 2x a day.
So along with a belly covered with polka-dot bruises in shades of red, blue, and yellow, I also typically have purple polka dots along my fingers. Which is so much fun when you are typing. Also, with the blood thinners, I’m a constant biohazard if I think I’ve stopped bleeding but haven’t.
My endocrinologist and I are agreed that switching to a sensor is ideal for a number of reasons (including being able to track sugar spikes and dips on a 24/7 basis) and she submitted an RX to the pharmacy.
And thus the paper chase began. First Walgreen’s filled the prescription, but it was showing up with a co-pay (I’m max out of pocket, so I don’t have any co-pays right now). I spoke with the pharmacist and they said they would re-try and get back to me. Of course, they are busy, so they didn’t. So I tried to chat with my insurance (United Healthcare) to find out what they were supposed to do. They explained that because the sensor is not a medication, but a piece of equipment, it had to be submitted to the medical insurance rather than through my prescription plan. He suggested they re-run it and it should be fine.
So I called Walgreen’s and told them what the insurance had said, but surprise – the tech couldn’t get it to go through. She said she would call back later, which she didn’t, so I called the next day and spoke with the manager who confessed there was no way for them to run it through medical – they just weren’t set up to do that.
Back I go to UHC and they now tell me that the only way to have it billed to medical insurance is to go through one of their two selected providers, which the previous rep forgot to mention. I try the first provider, Byram Healthcare, and after 25 minutes all that has happened is that I was transferred 5 times. So I hang up and try the second provider, Edgepark Medical Supplies. This time, after navigating a fairly straightforward menu system, I get a live agent and we work through everything. It still takes 20 minutes, but I hang up feeling like we are finally on our way.
Not so, fair reader. I get an email 2 days later inviting me to set up an online account, and since I’m all about online, I eagerly click the activation button.
Enter your date of birth, the website requests.
I type in my birthday and click enter.
Wrong birth date entered. Please try again.
I type in the date of birth more carefully, but still it is rejected.
Wrong birth date entered. Please try again.
I start re-considering my mere existence. Have a forgotten when I was born? I was very little on that day, so I can only trust that my mother told me the truth and that it is not some vast right-wing conspiracy.
However, confident that I was indeed born on the date I had entered, I call Edgepark once again. The wait is slightly longer this time, but the agent on the phone explains that my birth date had been entered incorrectly. She assures me it has been updated in the system and we hang up the phone.
I hang up and try to activate the online account again.
Wrong birth date entered. Please try again.
Sighing, I enter in the incorrect birth date, and am immediately activated. Fortunately, I’m able to log in to the profile section and update my information to reflect my actual birthday. And then I notice that they also have my last name spelled incorrectly. This, of course, is not a field that I can edit.
I call the Edgepark agent again, and hold a little longer again, but finally she is able to correct my name and when I hit refresh on the website, the change has indeed taken place. I see where my order is just pending insurance verification, and feel confident that now that my information is accurate, it should go through.
Alas, fair reader, if only it was true. Instead, I woke up to a notification that the order had been cancelled, and that I needed to call them back. I speak with another agent and am told that I was not approved because I have Type II diabetes, and my policy only covers Type I diabetes for a CGM.
More than frustrated, I call UHC once again. I speak with a kind man who assures me that I am indeed covered for this device, but I just need a prior authorization from my physician. Again, would have been helpful to know the first time around.
So I then contacted my endocrinologist once again, asked her to call the prior authorization line and let them know I’m approved for it and it is urgent, and then once I get confirmation this has been received, get to reach out to Edgepark again and try again.
I would cross my fingers – but they have bruises! So think good thoughts!
Last week I had appointments with 3 of my doctors. (I have “doctors” now – plural – aren’t I posh?)
The first appointment was with my endocrinologist (diabetes). This was a pre-scheduled appointment to check up on my A1C numbers. An A1C test is a blood test that reflects your average blood glucose levels over the past 3 months. The A1C test result is reported as a percentage. The higher the percentage, the higher your blood glucose levels have been. Standard range is 4.8-5.6%. As a diabetic, my goal is to be under 6.4%.
Back in December 2018, my A1C was 10.7%. This time, my A1C was down to 6.2%. This was a huge victory – and a reflection of finally finding the right mix of medicine and diet to keep me in a good place sugar wise. The surgery may impact this, so we’ll have to keep a careful eye on it. But it’s a good place to be in before the big day.
The second appointment was with the hematologist. Back in November, I was diagnosed with a pulmonary embolism (PE) in my right lung. For those who are not aware, PE occurs when a blood clot gets lodged in an artery in the lung, blocking blood flow to part of the lung. Blood clots most often originate in the legs and travel up through the right side of the heart and into the lungs. Blood clots can happen for several reasons, but in this case it was determined that it was as the result of my recent hospitalizations for kidney pain and resulting stent placement. The doctors felt it may have happened due to a lack of mobility.
The treatment for PE is to go on blood thinners as this will typically cause the blood clot to dissolve. Treatment is typically for 3-6 months, although blood thinners may be continued for life if you have a clotting disorder or cancer that increases your risk of another clot. I have been taking Eliqis twice a day since November.
My urologist wants me to discontinue my current blood thinner pills at least 3 days prior to the surgery to give it a chance to work its way out of my system. Instead, they are going to switch me to heparin injections, so that if there is an issue during surgery they can use another shot as a fast-acting antidote. (The whole thought of complications during surgery is not a reassuring one, but knowing that this doctor has thought ahead about it is somewhat comforting.)
Since I will have reached the 6-month mark right before surgery, the blood clot should hopefully be dissolved by now. Her nurse took 6-8 vials of blood to do some genetic marker testing, and I just received the results back today that my blood shows no sign of clotting and I should be in very good shape clot-wise for this surgery.
Of course, a big key to avoiding more clots will be to make sure the blood keeps flowing in my veins. Although I’m limited in the amount of walking I can do, things like compression sleeves can be put on my legs to massage the veins and keep things flowing.
My final appointment last week was to the dermatologist. At my annual physical back in February, my GP had noticed some “weird spots” on my back that she wanted to have checked out. When I didn’t make an appointment within 2 months, she sent me a rather stern letter urging me to go, in spite of all the other health issues I was dealing with and now with the pending surgery, I decided it was best to just cross it off the list.
It is the first time I have ever been to a doctor where the paper gown they give you is literally a crop top. It barely covered my chest, and definitely did not cover the roll of fat that is the bane of my existence. So that was fun.
The nurse who first triaged me wanted to know how long the spots had been there, if they were itchy or hot or red, and a myriad questions. I had to be frank – the weird spots on my back where out of sight, out of mind in the midst of all the other medical stuff. I was here because I was told it was important, but I had no idea what it was. He was sympathetic and left the room.
The dermatologist was kind and thorough. She mapped the various spots on my back, analyzed them through a handheld medical device, and deemed them all benign. She wished me well, and suggested I need not return until next year when hopefully I was in a medically-improved place.
I thanked her for time and left the office in relief. It was nice to not have to add anything new to my list.
3 down, a few more to go. I’m supposed to get all my womanly checks (mammogram, pap smear, etc.) and also have my eyes examined. And at some point, I need to re-visit the latest issues with the Ledderhose Disease (aka plantar fibromatosis) on my feet and see if there are any new treatments we can try. Of course, the big day is still June 17th – only 32 more days. I’m looking forward to being on the other side of that.
So on May 2nd, 2019 I went to Duke Urology for my surgical consult.
First off, let me say that the difference between dealing with the medical staff of Duke versus dealing with the urologist that was assigned to me here in Charlotte has been absolutely night and day.
Secondly, this surgery is no joke. They are using robotic assist to hopefully minimize the amount of time I’m cut open and how, but even with all their technology, they predict this to be a full day surgery. Then, depending on how much they can do robotically and how much they do manually, my hospital stay will be at least 3-7 days (in a world where they like to wrap you up and ship out) and then another several weeks of home recovery. Even after almost 2 months, they still caution you that you may only be at about 70%.
Knowing that the surgery is 5 weeks away makes it all a little surreal. I almost would have rather been whisked right in to surgery and already been on the journey back to good health. But the truth is that having some time means I can plan and prepare, so I’m trying to do that.
I’ll admit, my world has been a little small lately. Most nights, I head home from work straight in to my spot on the reclining couch where I immediately put my feet up, pull my quilt over me, and just try to get warm and out of pain. I literally live on that couch – I have slept there for the past 6 months (laying flat on the bed causes pain spikes) and have surrounded myself with all the necessary things. My side table, much like my purse, are filled with medications, toiletries, reading material, snacks, remotes, and more.
My spot on the bed has been covered with throw pillows, as SH doesn’t like sleeping alone without me. My nightstand has been a little dusty, and my bookcase and dresser top have become my dumping grounds for things I didn’t have room for in my couch biodome. I started calling the master bedroom “his room,” to which SH strongly objected.
“It is our room. You’ll be back soon, and I’m looking forward to it.”
So am I. I’m looking forward to being on the other side of this surgery, but I’m also making sure to enjoy the days between here and now. With my strength already less than it used to be, it is still more than I will have for a while. And our days are not promised. We can look forward to tomorrow, but we have to live for now.
Because, as the doctor has cautioned, there is still a chance that after all of this, I still might have pain. Some of it may be phantom pain – my head telling me I’m hurting when I’m not. Or it could be other problems that we haven’t found yet. My feet are a separate issue and will still have problems when this is over. My diabetes will still be around, and my blood pressure could be impacted. And even though we don’t like to talk about it, there is a chance that complications could arise and I could just not make it. (I’m not planning for that at all, but it is a possibility).
Whatever the case, I hope you don’t mind if I continue to share some of my experiences, thoughts, and struggles (and victories) as I go through this. (And if you do? Tough petunias!) Have an amazing day.
Every morning I take 10 different types of pills and 2 injectables. I line them up by size and shape, the smaller ones in pairs, and then begin to work my way down the line. Pop some pills, wash it down with water, repeat. When I get to the bigger ones, I sometimes allow myself to get distracted by my computer or phone or anything, as they sometimes make me gag and I need a minute to let the others rest first. But finally, down they go too. Then I slip down my waistband far enough to reveal the right side of my stomach, and find 2 spaces among the polka-dotted bruises to inject my insulin.
It’s a system I’ve grown used to over the past 6 months. In fact, my entire day is filled with systems and compartments. My purse, once so tiny it barely fit my keys and phone, is now a hobo bag of considerable heft that is filled with a half dozen zippered pouches. One pouch for my insulin needles, another for the injection pens and pill organizer. My glucometer, to test my blood sugar so I know how much insulin to take throughout the day. A pouch with my USB cord and plug to charge my phone, another with a battery back-up if no plugs are available. A big one filled with various things I might need if stuck somewhere, like an ER room overnight, with deodorant and breath mints, hair ties and fans, etc. A separate pouch for pain and nausea meds to take as needed.
Systems, routines, pouches, compartments. When I get home at night there’s “my spot,” a place on our couch already equipped with a pillow, my quilt, a glass of water, the various remotes, a rotating tray table, and a nightstand filled with more trays and systems to accommodate my night pills, my jewelry, extra pills and a biohazard disposal, napkins and scissors and pens and tissues. Things I might need within easy reach to avoid getting up when my body hurts too much to move.
I’m thankful I have these things. I’m even more thankful for a husband and mom and friends and medical professionals who help me navigate this health journey I’m on.
What I’m not thankful for is the burping. Lately, I’ve been having these awful sulphur burps. This very unladylike belches that erupt without warning and leave an ungodly taste and smell of rotten eggs in my mouth. They are not attractive. They are not welcome. And quite frankly, they are another side effect that I could seriously do without.
Tomorrow, we go back to Duke to discuss my upcoming surgery. My official diagnosis is low grade papillary urothelial carcinomas. They were found throughout my left kidney and ureter and so the doctor wants to remove both. This is important, and this is scary. We have a lot of questions and things to discuss. I’d be a lot more scared about what is happening if I had time to think about it.
But instead, I’m just burping. Hmmm. Maybe I am thankful for them after all.
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