If anyone deems this "TLDR," I will not blame you. If reading about medical-related anything, especially of the female variety, makes you squeamish, you should probably look away and again, I would not blame you. But should you stick around, I thank you in advance.
OKAY, HERE WE GO....
Well, first of all, "where have I been?" Blog-wise, I've mostly been at my other site. You can always find more there. But the answer is really bigger than that.
More than a year ago, I started to feel sick. "Sick" may not even be the right word. I felt tired. DEADLY tired. Exhausted. It started in January of 2017, when I got my period (and, to be candid, it has not stopped since). Then, as if I were not tired enough, as the year went on, things got exponentially worse.
Many doctors later (folks, there are some shitty doctors out there - do not settle), we were able to find out I had about 13 Fibroid tumors in my uterus and those suckers had to GO. I say "about" because that's what they could see. It's likely there are more behind them, hiding. The biggest one is tennis ball-sized, pressing into my bladder. This is the most evil and leader of the tumors. It makes me pee like I'm 97. Flip over in bed during sleeping? That asshole makes me wake up to go. Sit down for too long and stand up? Gotta go. I would come to call the tennis ball "Suge Knight." I would come to call the whole lot of them "Suge and the Gang." (Fun fact: My OBGYN did not know who Suge Knight was. If you also do not, you should google him and also probably see the movie Straight Outta Compton.)
You gotta put humor into the situation or else you're just gonna go crazy.
I had two choices - a partial hysterectomy or an abdominal myomectomy (this is like a cesarean section, except instead of pulling out a baby, they pull out the tumors). I opted for the latter. I get pretty stubborn about having my choices taken away from me, which is how I saw the hysterectomy.
At this time, despite any malaise I felt, I was also working hard to better my life and improve my overall health, and dropping a lot of weight. This is a good thing in theory, of course, and 130 pounds later, I am not at all sorry about it, but it did mean a lot of dietary changes and as such, a lot of deprivation of vitamins (inadvertent) and calories (on purpose) my body was used to ingesting. So.... that.
Several rounds of lab work prompted my primary physician to send me off to a lab in the hospital where they did Iron infusions. I went six or seven times, in the mornings before work, where some extraordinarily kind nurses (my favorite one would talk about hockey with me!) would put an IV in me and for a couple of hours, I would - literally - pump iron. I didn't mind, in fact. There were heated blankets, animal crackers, and juice boxes. Sometimes I would take out my laptop and work while it was going, sometimes I was too cold to stay awake (a lovely side effect of Anemia -- being a human popsicle) and I would go to sleep with hot packs in my hands.
But a month later, these treatments had not helped enough, and my physician decided to send me to a Hematologist. At this point, in addition to the infusions, I was, in fact, taking iron pills, multi vitamins, and more, so even though I was chronically bleeding, and eating less, there should have been enough compensation. So really the problem was, my body was not absorbing iron.
There are several types of Anemia, you see, and it turned out I had a few of them. I was also clinically Vitamin D and B12 deficient. It wasn't life threatening at this time and my Hematologist prescribed a grander series of Iron infusions. This time in her office, where she also treated Cancer patients. I went a few times a week for a few weeks and sat among people far sicker than I, getting my infusions, and trying not to feel miserable and remind myself it could be far worse. Again, I would work most of the time, and sometimes I would sleep.
The problem was, my morale was slipping and I wasn't feeling better. I was still trying to live my life, you know, and other side effects of Anemia were striking me. I wasn't always able to concentrate. My memory wasn't too hot. There would be days I'd have to sit down and sleep because it literally, physically HURT not to do so. I wanted my life and my SELF to be normal. I wanted to do my job well. I felt like I was letting people down. I was panicked something was really wrong with me, and would spend time on Google, looking up my symptoms like a true hypochondriac, trying to figure out which form of Cancer WebMD thought I had.
In December, a real zinger - I parted ways with the company I was working for. You wanna talk morale? Three days before Christmas, at the height of my health being shitty, I was now losing my health insurance. GREAT.
In January, to be candid, I managed to hit a lower point. I was working daily to get my health insurance (COBRA) reinstated but some things had been mishandled by various third parties. I will not summarize all of it for you because I've never been so furious, frustrated and heartbroken in my whole life and I refuse to relive it. Honestly. I could feel myself slipping into a deep depression -- well, that's what I thought it was. I was sleeping more. I was freezing cold all of the time. I was pale (even for me!) and I couldn't so much as walk from my bed to the bathroom without feeling out of breath. Climbing stairs? Nope. I had (I counted) a 27-day long headache that nothing would cure. I didn't know what to do. And boy did I develop a lot of empathy for people with lousy or no insurance. What do REALLY sick people do? (And don't tell me "Obamacare" - that is a great offering for some, but it was not something that would help me, nor could I sign up for it quickly enough. It's so beyond complicated.)
When, in early February, I finally got health insurance again, I went right to my OBGYN. I wanted my surgery to happen as scheduled (back in December, we had planned it for February 15) and I wanted to get better, but there was very bad news.
I may have been depressed - I had left my job, after all - but I was actually very sick. In addition to being iron deficient (so much so, there was almost none in my body), my hemoglobin was at four and my ferritin was at three. What does that mean? Hemoglobin, which should be at a minimum of 12 but ideally much, much higher, circulates oxygen in your bloodstream and makes your organs go. It's like fuel that way. Without it, my organs were all working major overtime. My lungs, my heart, my liver... This was a lightbulb moment. Now I could explain the complete and utter exhaustion. Some of the nurses didn't even understand how I was walking around at all. I can't explain it either knowing what I know now. All I can tell you is that it's amazing what your mind and body learns to tolerate and push through when you don't have a choice. And what about ferritin? Well, that is the very thing that helps your body absorb iron. Three is so low it's critically dangerous. In fact, they very nearly checked me right into the hospital when they got those results, but did I mention I am stubborn?
So the surgery had to be postponed. No one wanted to risk organ failure or my bleeding out on the table and I was super ticked about just EVERYTHING, but I certainly did not want to die on that sword, so I got myself back to the Hematologist.
Now, did you know all the hurricanes over the last year have left our country with a shortage of Venefer? (That's the iron infusion they give me.)
In order to get the amount of iron I needed, I was at the hospital every day for two and a half weeks. By law, they had to give smaller amount, but they could do it daily to meet the quantity I needed. It seemed ridiculous, but I didn't have a choice. And in addition, on two of my visits, I also had to get blood transfusions. That was intimidating to me. And it's rather uncomfortable, though I wouldn't say it's painful. It took a few hours each time but again, laptop and/or sleep. Juice box, cookies, blanket.... I can't say enough nice things about nurses.
There were odd and minor side effects. Scar tissue in my veins from being poked so much, an ear infection, inflamed joints, a weird thing called PICA (all I want to eat is ice cubes - it's so weird), a small hemorrhage on the back of my left eye.... I only laugh now. Because it's all so insane and if you don't laugh, you'll do the other thing....
And I still didn't understand how sick I was until I finally started to feel better. These last couple weeks, I am more myself than I have been in MONTHS. And now, sort of stepping outside myself and looking back, I see how ill I was and how wrong I was to not take it even more seriously and demand time off to get better, etc. So much I would have done differently. But then, who knew? Who would guess? I'd never even though about HEMOGLOBIN before. I work in a fast-paced industry. People who do what I do make sacrifices all of the time without a thought. We go-go-go. And that is my nature. I do not sit still well.
All that is to say I do feel better now. MUCH better. I've had lab work that agrees, too. I can't say I love climbing a flight of stairs (my joints are a little weak and I have some circulation issues still), but I can take walks now, and I can get through a day without napping (not always, but most of the time). I do try to take it easy and not stay out late at night. I've mostly given up alcohol for the time being (I'm still taking a ton of medication so that seemed smart) and go to bed a little earlier than I used to. But it's night and day difference. In fact, I hardly even remember January. I think of that time as living in a coma. Seriously, I saw movies I don't even remember seeing. It's a little nutty. Things come back to me like I am a recovering Amnesiac.
THE GOOD NEWS: My surgery is back on and I am really excited for it. Weird, right? I am excited because it's the final step. I can say adios to Suge and his crew of nasty thugs and then, LET THE HEALING BEGIN!
WHY AM I TELLING YOU THIS?
I don't always share deeply personal life news, but when I do, it's for a reason.
First, because the last time I had a complicated illness, I wrote about it and a dozen people reached out to thank me for sharing the story. It helped people, gave some people encouragement, and that made me feel like I was doing some good in this world. So perhaps I'm helping someone suffering right now. Second, I ended up joining an Anemia support group on Facebook and everyone is so open and honest about their struggles. It's been inspiring. And it empowered me to share more. Third, well, like I said, I was in and out of "comas" for a while and some people were probably worried about me. Now they know what was wrong. And lastly, to be totally honest, I needed to walk through this in writing as therapy. I'll need to look back on this someday and reflect on it.
If you want to learn more about Anemia, click here.
If you want/need to join the Facebook Anemia support group I mentioned - and I highly recommend it - click here.
If you are suffering from this, anything like this, or even something else entirely, I beg you to first, see a good doctor (a good place to remind you I AM NOT ONE), and to please have HOPE. At one point, I remember breaking down and telling my mother I had none left and that was the worst I've felt throughout this whole experience. It might even be the one of the worst moments of my life. I'm not exaggerating. Hope is a powerful thing and I believe in the power of hope. It is, in fact, my favorite word in the English language. Never lose it.