Feeling like fake news

I recently texted to my mom:

“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.

3 for 3 – yay me!

Doc Talk

Last week I had appointments with 3 of my doctors. (I have “doctors” now – plural – aren’t I posh?)

First Appointment

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.

Second Appointment

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.

Third Appointment

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.

Next Up

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.

Nephroureterectomy (Gesundheit!)

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.