I went off the reservation for a while; sorry about that. Honestly, I haven’t felt like doing much of anything these past several weeks. I’m so glad that the first few months were relatively easy, because I don’t know that I could’ve made it all the way through if the side effects were so rough right out of the gate.
So, here’s a rundown of what’s happened as far as the side effects are concerned.
The clumsiness has gotten much better. I don’t get lightheaded upon standing, and I haven’t had too many instances of tripping or stumbling. It was definitely pronounced during the first three months, but has gone away for the most part since.
The joint and bone pain has gotten MUCH worse. No more PRs for me on 5ks right now. I’m doing well if I can get out and walk, much less run. I am still getting out faithfully, though (except today, because I really do think I need to give my legs a rest). I keep track of my steps through my Jawbone Up, and I made my goal every day in June. We’ve managed a few 8+ mile hikes (Mitchell in less than three weeks!!), but my legs, arms, and hands hurt constantly. My mantra has become, “If I’m going to hurt sitting, and I’m going to hurt moving, I may as well be moving.”
The sadness/depression/anxiety/grumpiness has gotten worse. I’m avoiding just about anything that’ll make me sad, which is pretty much everything. My patience is extremely thin, so if I’m not feeling like I want to cry, I am feeling like I want to bite everyone’s head off.
I’ve gained about ten pounds. I chalk it up to my own decisions. I’ve eaten too much because “I can afford to do it since I’m exercising so much.” I’ve picked stuff that’s easier/more convenient rather than picking healthier choices. So that’s all on me; I hate it, but I don’t blame it on the Lupron. I’m back on the wagon, so I anticipate losing it relatively quickly.
The hot flashes are still manageable. It probably helps that it’s summer, so it’s hot as balls anyway.
People keep asking me, “but does your endo pain feel better?” Honestly, since I didn’t know I had it before, I haven’t noticed. Maybe my insides don’t hurt as much, but my arms and legs hurt so bad that I want to cry sometimes, so I’m not sure what the improvement will be as far as that goes. But that wasn’t the reason that I agreed to take the drug anyway.
I got my final injection this morning. Ginger gave me a big hug and said that she wanted to see me again when I’m pregnant. I appreciate her optimism. So I’ll have another month or so of Lupron side effects (and whatever residual effects there may be), and then we start the fertility journey again.
I have mixed emotions; I know it’s weird, but “Lupron” has become my identity over this last five months. While the physical process has been difficult, it’s also been good in that it’s forced me to be in the present moment. There’s been no point in worrying about whether or not we’ll be able to have kids since we couldn’t even try. My focus has been on getting through this moment, this day, this week…preparing for Mount Mitchell, trying to keep from eating all the food, getting out the door and walking or running. Thinking about the future was pointless because I felt so far removed from it.
In that respect, I’m afraid. Now the process begins again, and I don’t know what it’s going to look like. More shots? More hormones? More side effects? More heartbreak?
On the other hand, I’m a little excited. I never thought I’d say this, but I missed the temperature charting and testing, and that twinge of excitement for a couple of weeks of imagining the possibilities and hoping for a BFP (Big, Fat Positive). I missed the feeling of hope.
I go back to the OBGYN on the 26th and we’ll discuss our next steps then. Until that, my main focus is to summit Mount Mitchell on the 23rd.
If you’ll recall my list of side effects that suck, clumsiness and stumbling/falling is one of the more common ones. This one’s kind of tough, since there aren’t a whole lot of tricks and tips to offer. I suppose you could opt to use a walker until you’re done with the Lupron, but if you’re not receiving Social Security benefits due to your age, then you probably don’t want to do that. For the most part, I’m muddling through with this and just trying not to faceplant in front of people.
Don’t stand up too fast. My biggest problem is that I become lightheaded upon standing, but it doesn’t really hit me until I’ve taken about twenty steps. I spend the rest of my walk trying not to pitch forward. Stand slowly, and wait until the feeling passes before you start moving.
Lean against something (stable) for a moment after you stand. If I’m near a wall, I’ll rest on that for just a couple of seconds before starting off, or I’ll hold onto the back of my office chair for a bit before moving. It’s embarrassing, but better than meeting the floor face-to-face.
Walk deliberately. Pay attention to where you’re going, what the path in front of you looks like, and where the people around you are. Focus on your end destination and it’ll help you to keep from getting distracted and stumbling.
Use a friend. Joey’s probably tired of the amount of times I grab his arm while we’re walking somewhere. If you’ve been honest with your loved ones, they know that you’re dealing with clumsiness and won’t mind offering you a steadying shoulder to lean on.
Sit down! If you think you’re going to fall; sit down. It’s better to sit against a wall than to throw yourself into it. One requires medical attention and drywall repair. You can handle some minor embarrassment. Besides, people might toss change at you, which you can put toward your outrageously expensive medical bills.
Of course, it goes without saying (hopefully) that you may want to wait for the Lupron to leave your system before you head out for your Everest expedition or attempt to summit Denali. Or before you tightrope walk the Grand Canyon. Or take up with Cirque de Soleil.
Be careful out there, ladies.
**note, I am not a doctor…just a clumsy Lupron patient. None of my advice should outweigh anything your own doctor suggests you do. Although I sincerely hope s/he doesn’t tell you to climb Mount Everest while on Lupron.**
Today is my third shot; halfway there! And while this hasn’t been nearly the horror story that I’d read about, I don’t want to give you the impression that the entire experience is sunshine and rainbows, because it’s certainly not. Here’s the rundown of the side effects I’ve dealt with over the last two months. I’ll focus in on each one in future posts to discuss how I’m dealing with them.
Joint Pain: for the first few days after the shot, my hips and knees hurt pretty badly. I first noticed it when I was in the bed and Shelli (my kitty) hopped up on my hip to curl up and sleep. She does this every night (which makes sleeping an adventure since she’s balanced so precariously…I can’t tell you how many times I’ve inadvertently launched her across the room), so it’s not all that unusual, but I saw STARS the first night. It typically goes away after about three days, so I just make use of the ibuprofen for those days and wait it out.
HOT FLASHES: man, that first flash was ROUGH. I was on a conference call that was particularly aggravating, and I felt myself go nuclear. I got so hot that I started to feel cold, which actually wasn’t all that unpleasant, so I felt pretty successful for having made it through. This side effect was one of my greater anxieties, because I’m already hot-natured. I will say, though, that the add-back medication has helped immensely. I think I’ve only had a handful of genuine “flashes” over the last two months, and they’ve been bearable.
Weepiness: I won’t call this “depression.” I’ve been depressed before, and this is nowhere near that bad. I’d liken it to typical PMS-type sadness; news stories make me want to cry (especially ones about animals) and I’ve found myself reading too many sad stories for the catharsis of “crying it out.” While it sucks, it’s definitely not that soul-crushing type of hopelessness that comes along with clinical depression.
Irritability/Grumpiness: I’m already a pretty grumpy person, so I’m not sure how much different I am, but I can definitely feel myself get frustrated more easily and there’s been a time or two where I’ve said something snippy that I may not have said if I hadn’t been on Lupron. Thankfully, for the most part my friends have found my grumpiness to be entertaining, so I don’t think anyone is ready to cut me out of their life just yet. I’ve not experienced the “Lupron Rage” that I read about; I’ll take some minor irritability over rage any day.
Hungriness: Holy crap this has sucked. I went from not wanting to eat anything for two months after surgery to wanting to eat ALL. THE. DAMN.TIME. I can see how people gain excessive amounts of weight if they’re not paying attention to what’s going on with their body. I’ve had to make a concerted effort not to eat everything I see and to offset the overeating I do with a healthy amount of exercise. I’ve lost about four pounds over the last two months; I’d like it to be more, but I’m not going to beat myself up too much about it.
Clumsiness/Lightheadedness: I put these together since most of my clumsiness is a result of feeling a bit lightheaded when I stand up. There was one incident at work where I barely made it into the bathroom stall before falling down and I ended up cracking my head against the side of the stall when I sat down. That was a little frightening. In fact, this one has probably been the most frightening of the side effects, since the possibility of my falling down in front of people is high, and making a spectacle of myself is one of my phobias. Joey has mentioned a couple of times that he’s a little nervous about my falling off Mt. Mitchell. I just told him that I’d tie myself to him so we’d both go together if I fall. On a positive note, though, this side effect has improved over the last two months; I haven’t had it nearly as bad the second month as I did the first.
That’s it, guys. While this clearly isn’t a walk in the park (more like a “stagger through the park while it’s 100 degrees”), it absolutely hasn’t been the horrific experience I read about online. I know that there are women out there who’ve had a genuinely terrible time with Lupron; I’m not trying to diminish that. However, if you’re out there and your doctor recommends it as a treatment for your endometriosis/infertility, I don’t want you to feel hopeless and terrified. It’s possible not only to survive, but THRIVE while you’re on this drug.