Surviving As Mom

First, I want to apologize for my absence. I can’t always get my thoughts organized enough to blog. I’ve also been quite busy living my life as much as I could, and being chronically overwhelmed. I feel like my ADHD has gotten significantly worse as I’ve gotten older so I’ve been struggling with that a lot lately. The only good thing about it is if I can get myself moving, I can accomplish a whole lot in a day.

I’ve spent the last year organizing every corner of my house, building gardens all around my yard, and getting myself physically fit through various forms of exercise. I’m always trying to occupy my mind with some hobby or activity, especially after being nearly bedridden for so many years. Sitting idle drives me absolutely insane!

Once all the snow melted in early spring. I started working on preparing different areas of my yard for gardens. Flower gardens, vegetable gardens, herb gardens. Some of them turned out great while others have quickly been taken over by weeds. It’s discouraging, but I try not to let it get me down. I realize now that I most likely bit off more than I can chew with all of these gardens because I can’t possibly maintain them all, but I still enjoy trying. 

On the other front, I’ve been keeping up with my health and fitness as much as possible. I do gentle exercise, such a stretching, simple resistance work, and bike riding. I’m very proud of the fact that a few years ago I was getting less than 2000 steps per day because of how sick I was and now my average daily steps are 10 to 15,000. I am very proud of this fact!

I wish I could focus better and be more productive indoors by cooking more, and just doing better with maintaining the household. The cooking has never been my strong suit. Not that I can’t cook, but I have such a hard time going from planning a meal to buying the ingredients to preparing the ingredients to ending up with something decent to eat. I’m also repulsed by handling meats, so I greatly dread the process. I can do it on occasion, but I certainly cannot maintain it on a daily basis anymore. This frustrates me very much but I do the best I can. Damn this ADHD!!

It is so amazing to be able to live my life again after being sick for decades. I can definitely say that right now I had almost no quality of life before. Because I’ve lived on both sides of this, I can definitely appreciate every day that I’m functional. Even on the days that I feel like I couldn’t get anything done and it was a complete waste. I always try to be grateful for the fact that I wake up feeling good and I am able to do whatever I need to do without feeling like I’m dying. I am so fearful of getting sick again that I often give myself panic attacks if I’m down for too many days. There are times of the month based on my cycle when I feel a little less great, although those times are usually nowhere near as bad as I’ve been in the past. I can honestly say that my worst days now are better than my best days before. Still the thought of me going back to that life is absolutely terrifying. I do know that what I’m doing is most likely temporary and at some point I will end up like that again, even if it’s when I’m older. For now, I’m just gonna try to enjoy every bit of it before it’s gone.

I also realize that the one medication that’s making the biggest difference in my health is probably temporary. My doctors are trying to make me stop taking it because it’s not really a long-term solution. I take meloxicam which is an anti-inflammatory that does something miraculous with my body. It’s help me feel well enough so that I can take the steps to be healthier by exercising and eating better. I am very proud of where I am right now and I work very hard to maintain this. But again taking the meloxicam is at risk because of a medical issue I had about two years ago.

I went to my doctor feeling like I had a cold that would not go away and it was actually getting worse. So after two weeks of feeling achiness and heaviness in my lungs, I had my doctor check me and it turned out I had a pulmonary embolism (blood clot in the lungs). Apparently I had been walking around for two weeks with my lungs clogged up with blood clots. Fortunately, it was not severe enough to cause me to drop dead on the spot. It was more like sand clogging up multiple vessels. I spent the weekend in the hospital getting Clot Buster treatments, and I was sent home with blood thinners. I have been on the Eliquis for the entire time since then for fear of it happening again since these blood clots were mostly unprovoked. We have no idea what caused them and so it is very scary to think that I can just develop a random blood clot that could kill me at any moment. The issue is I cannot take meloxicam with the Eliquis because I can risk bleeding to death. So I’ve had to make a choice of my quality of life versus my quantity of life. I’ve decided that my quality of life is more important because if I have to be sick again the way I was there is no point in living anyway. With that, I will be coming off of the Eliquis in the near future hopefully so that I can continue taking the meloxicam and being as healthy as I can be. Still terrifying to know that I could just suddenly drop dead from a blood clot.

I know that having an auto immune disease increases my risk factor for blood clots. I also came off of the Plaquenil a few weeks before the blood clots struck so there’s a theory that the Plaquenil has some kind of thinning effect. One of my options is to go back on a low-dose of the Plaquenil to hopefully prevent future clots, but I really don’t want to take that drug because it had its own set of problems. I’m pretty sure it caused my hair loss that I dealt with. Since stopping the Plaquenil , my hair has grown back very nicely. Life is full of tough choices.

For now, I just carry on each day and continue to do as much as I can and enjoy as much life as I can before I can’t. Right now I am healthy and functional and strong and I will just do my best to maintain this until I can’t.