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The Chronically Ill Parent

 

Parenting with chronic illness(es) is as easy as crab walking through the mud 25 miles uphill. Except after the crab walking you get to take a hot bath in peace.
Parenting with chronic illness(es) is as easy as crab walking through the mud 25 miles uphill. Except after the crab walking you get to take a hot bath in peace

Things have been rough. First of all, it’s becoming clear to me that I have no idea how to rest. But I have been reading a ton…so I guess that counts as resting…but I’m sure there has to be more to it. I’m just not sure what else there is. I have to remember my resolution of self-care and why it’s important. But it’s difficult to keep in mind.

I have been in so much pain as of late. I have been on two antibiotics (minocycline and nitrofurantoin) but ever since I stopped the Bactrim a few days ago I have been in just ridiculous pain. It’s like I can feel the infections in my bladder just bubbling away, leaving me in a ridiculous amount of pain 24/7. Now I’ve finished the minocycline and stopped the nitrofurantoin and just yesterday have started a new one, clindamyocin…it’s super harsh on my stomach. And makes me feel awful because it is so strong. 

Unsurprisingly, I have had a yeast infection due to all the antibiotics. So I got a 30 day Rx for Diflucan while I’m taking, even more, antibiotics…yay… And soon I will be retesting my urine to see what other (if any) bacteria might be in my bladder still. As well, Aaron will be getting tested this time around. He was recently given a round of antibiotics but it seems like a good idea to test him too just to be sure there is nothing there that he can give to me.

So on top of that pain in my bladder, there was one day last week that was a really rough day. I was informed that morning by my internship that I needed to go pick up a form for a urine drug test that same day. So I had to hustle down to the Department of Corrections (DOC) in DC to pick up this form which was only being held for me that day. The place was huge…as far as prisons go. And I got lost…of course. I was worried I would be late picking up Reid from school. I finally found where I was supposed to go and I got my form and it said I was supposed to go straight to the clinic. Crap! I didn’t have time for that nonsense. So I had been texting Aaron throughout this…and I said “Mother fucker! They said I have to go straight to the clinic!” 

You know that moment when you realized you sent a text to the wrong person and your stomach drops to your feet and you are like holy fucking shit what did I just do?! All you want to do is just crawl 6 feet into the ground and never come out again. That happened…Because that text I sent to Aaron, I actually sent to my internship supervisor. Yep..that happened lol. Fortunately, my internship supervisor was really cool about it. I apologized for being inappropriate and sending that. She said girl stop trippin..I’ve heard worse. Oh thank goodness! And of course she has..she works with prisoners. I explained I had to go pick up my step-son from school and going straight to the clinic wasn’t really an option and she said that I could go for the urine test the next day. Sigh of relief.

Even still, the stress of, getting lost and thinking I was going to be late to pick up Reid and then texting the wrong person was more than enough to get an instant mega migraine. Not a fun situation. Eventually, it subsided with a lot of migraine meds. 

Since I’ve been on summer break, I’ve been spending a lot of time with Reid…picking him up after school every day. Most of the time I think of how lucky I am to have such a beautiful family. A supportive partner like Aaron is hard to come by. A loving adorable step-child like Reid who I have bonded with is something I never knew I could want. As well as Reid’s mom and her partner, I like to think of us as a parenting unit..the four of us work together to care for Reid and provide him the best support possible. And I can’t imagine my life without them now. But there are just some days when my health is particularly perilous that I want to run and hide because Reid never stops talking and singing. He just never stops. 

And now I can’t imagine my life without Aaron and Reid. But there are just some days when my health is particularly perilous that I want to run and hide because Reid never stops talking and singing. He just never stops. It’s always go go go with him. 

Having chronic illness(es) is fucking hard and having a child is fucking hard…but put them together and it’s a whole other level of difficulty that is nearly impossible to describe. Especially when that child is Reid, who is more than a handful. But don’t get me wrong…I love this child so much. And sometimes he does things and I have to wonder how he isn’t part my child too.  He has picked up some of my mannerisms, but not just that…he is super sensitive like me. That’s not something he copied from me though, that’s just who he is…loud noises, bright lights, strong fragrances are an issue for him…just like they are an issue for me. 

But anyways, being a parent with a chronic illness is very challenging. Every day I have to decide…do I feel so terribly that I’m just going to turn on the tv for him so that I can go lay down and rest? Or would I rather forgo rest and try to get him to play or do an activity book? And he does know about my chronic illnesses…not all the exact details. But I’ve explained my IC and migraines to him in a way that he can understand. He also is very perceptive and he can tell when I’m in pain and don’t feel good.

When I can’t do things with him because I am in too much pain and I can see how upset he is, it breaks my heart. Or when he helps me with things that I should be able to do myself but struggle with because of my pain. He is very sensitive to my pain and doesn’t seem to mind helping me when needed. He always wants to kiss my pain and make it better, which is incredibly sweet. For a long time, I was working towards the goal of being able to walk long distances again without exhausting myself to be able to take him to the aquarium. We haven’t done that just yet but we plan to take him soon. 

For a long time, I have been working towards the goal of being able to walk long distances again without exhausting myself to be able to take him to the aquarium. We haven’t done that just yet but we plan to take him soon. 

A couple months ago we did a family photo shoot with Tiffany at TMGS fotography. This was more than just a photo shoot, it was a whole experience that we had. We went to the National Arboretum, we ran around and climbed trees. It was a lot of fun. I would like to share some of the pictures from that. 

[image description: background a large tree and grassy area. Rachel wearing a blue dress and a coral sweater looking down smiling at Reid in navy blue top, and embracing him as he looks back towards the camera and smiles.]
[image description: background a large tree and grassy area. Rachel wearing a blue dress and a coral sweater looking down smiling at Reid in navy blue top, and embracing him as he looks back towards the camera and smiles.]
[image description: Reid, wearing a navy bluy shirt, behind Rachel kissing her on the cheek. Rachel smiling and laughing with a scrunched up face and wearing a coral sweater and long red hair all around.]
[image description: Reid, wearing a navy blue shirt, behind Rachel kissing her on the cheek. Rachel smiling and laughing with a scrunched up face and wearing a coral sweater and long red hair all around.] 
[image description: in the background a large tree and in the foreground cherryblossom branches hanging. Rachel, wearing a long sleeve black top, standing with her arms around Reid who is wearing a white button down shirt with teal and black designs and both are smiling at the camera] —
[image description: in the background, a large tree and in the foreground cherry blossom branches hanging. Rachel, wearing a long sleeve black top, standing with her arms around Reid who is wearing a white button down shirt with teal and black designs and both are smiling at the camera] 
And here are some pictures with Aaron as well…

[image description: Rachel and Aaron standing framed by the branches of a large tree. Aaron, wearing navy blue shirt and smiling with arms around Rachel. Rachel, in a navy blue dress and coral sweater, face pressed gently pressed to Aaron's and her hair swept off to the side.]
[image description: Rachel and Aaron standing framed by the branches of a large tree. Aaron, wearing a navy blue shirt and smiling with arms around Rachel. Rachel, in a navy blue dress and coral sweater, face pressed gently pressed to Aaron’s and her hair swept off to the side.]
[Image description: Aaron, in a navy blue top, smiling sitting in front of a giant tree while holding his smiling son Reid, also in a navy blue top, and Rachel who is also smiling, in a navy blue dress and coral sweater with long red hair swept down to the side]
[Image Description: Aaron, in a navy blue top, smiling sitting in front of a giant tree while holding his smiling son Reid, also in a navy blue top, and Rachel who is also smiling, in a navy blue dress and coral sweater with long red hair swept down to the side]
But anyways…I love these pictures…This isn’t all of them. But we can also talk about how life looks so perfect in pictures. But I can tell you it is most certainly not. These pictures are the product of makeup, photoshop, and the sunshine. But afterward, I felt the pain of it all. All the climbing trees and stress of the fun of taking pictures. It’s easy for people to think a chronically ill person is just fine because they post some pretty pictures on facebook. But the reality is…sometimes we just like to feel normal…even if it’s just for a couple hours. 

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