It’s been awhile…with updates

 

my-expectations-for-us-moving-in-together-are-at-least-marginally-higher-than-the-medical-community-finding-a-cure-for-my-chronic-illnesses--d1fb0
Image: My expectations for us moving in together are at least marginally higher than the medical community finding a cure for my chronic illnesses.

Okay…so I’ve kind of dropped the ball here. But it’s summer… that’s the excuse I’m going with. I’ve been busy with a kid and packing. First I’ve been super busy on the mommy train…just daily entertaining and dealing with Reid as best as I have been able to. My first week off of mommy duty which was the past week and I have literally spent the entire week from the time I woke up at 8 am until midnight packing.

Packing??? What for? To move. Yea that’s right I said it. I’m moving. Don’t worry I’m not going to far…not even out of state. But nonetheless here I go. Aaron and I are moving in together. We have been searching for a place to live for the past few months. We found a house.

All of this on top of my health… has been … eventful. I’ve been on and off antibiotics for my IC. Currently, I am off of them. Which always makes me feel extra crappy and kind of like I am getting a kidney infection so I am waiting for my urine broth culture results to come back.

And my doctor increased my Topamax, which is my migraine prevention medication because the visual auras flashing in my eyes has been getting out of control. The biggest issue is the side effects of this medication include problems with memory and struggling with word comprehension…and yes those side effects do impact me quite a bit. I love it…./sarcasm.

But hey…we are moving! To a house just outside of Washington DC, still in Maryland. It’s about 20 minutes from Gallaudet so it will be an easy commute for me to get to school. It’s a four bedroom house, with a basement, a screened in porch, backyard, fireplace (which we won’t use because of my asthma and bronchitis). And the biggest and best advantage is its 5 minutes away from Reid’s mom and her boyfriend. We wanted to find a house that was as close to Reid’s mom as possible. And we did! Just a few streets over. The house is everything we were searching for. 

I realize it’s a bit out of the norm trying to move closer to your child’s other parent. Usually, people want to escape their ex. And maybe for awhile, they did. But now it’s all changed. The four of us, work together to parent Reid. We constantly tell him that he has four parents who love him so much. We do monthly family dinners and see each other often. And now we will live within walking distance so Reid can have a closer relationship with all of us.

I am excited about all of this. Moving in with Aaron is huge. I never thought I would end up in a long term relationship. And now I’m moving in with Aaron and we have a family. Me, Aaron, Reid and my four awesome cats (Blinken, Stanley, Marzipan, and Ziggy). 

Getting packed up is difficult for me for a few reasons. Firstly, I have a lot to pack up…but who doesn’t…amiright?! Secondly, having chronic illness defintely makes packing more of a challenge. I tire more easily and feel weary. I need to be careful that I don’t overwork myself or I could make myself sick. So I take frequent breaks to rest and sometimes I have to just move slower than the average person. I started packing awhile ago so I would have more time to pack up and get ready. 

I’m going to work on keeping this blog better updated while packing and moving even if it means shorter posts. 

I have a few pictures to share. The first is from a wedding of a good friend of mine that Aaron and I went to recently. I just thought the picture looked cute because we were all matchy and adorable. And I forgot what it feels like to put on dramatic makeup…purple eyeshadow with a dark eyeliner and what not. It’s been a really long time…not to mention heels. Wow… I forgot how much heels suck. lol. I haven’t worn heels at least since I injured my ankle a couple years ago. But luckily my ankle was fine. 

I guess I wanted to show this picture, because as I always like to emphasis as someone with invisible chronic illnesses…it can be difficult to tell that I am in pain and chronically ill. I clean up really well and people don’t realize how much pain I’m in when I’m standing there smiling like this. 

 

Image: Rachel and Aaron standing in a gazebo with scenic farmscape in the background. Rachel smiling, her hair up. She is wearing a purple dress with white polka dots and black heels. Aaron is smiling, has his arm around Rachel. Wearing a black suit and a purple dress shirt to match Rachel's dress.
Image: Rachel and Aaron standing in a gazebo with scenic farmscape in the background. Rachel smiling, her hair up. She is wearing a purple 1950s style dress with white polka dots, black tulle poking out from underneath and black peekaboo heels. Aaron is smiling with his arm around Rachel, he is wearing a nicely tailored black suit and a purple dress shirt to match Rachel’s dress and his black tie and purple polka dots on it.

And the next picture I wanted to share is just a nice pic of me, Reid and a starfish at the Baltimore aquarium. We had a lot of fun along with my best friend Shelby. One thing that I would like to say is that I am always honest with Reid about my pain. He might not know all the exact details of my pain and illnesses but he knows I have pain and that I am sick and he can tell when I am in pain. So he knew walking around the aquarium was hard for me, but I wanted to take him because we had been talking about going for awhile. He knew that we would take frequent rest breaks and bathroom breaks.

This picture doesn’t display the amount of pain I was in or the fact that I had just taken a bunch of ibuprofen and tramadol to get me through. But it does show how much fun we were having regardless of my pain. 

Image: Background is a tank at the aquarium with various fish swimming around and a starfish stuck to the glass. Rachel kneeling down with her arms around Reid smiling. Reid wearing a bright green shirt smiling really big.
Image: Background is a tank at the aquarium with various fish swimming around and a starfish stuck to the glass directly above Rachel and Reid’s heads. Rachel kneeling down with her arms around Reid smiling. Reid wearing a bright green shirt and smiling really big.

And last picture below is our soon to be home as of August 4th. There’s no place like home. 🌈😍

image-house first floor red brick with red front door and two front windows on either side. Second floor light blue paneling with three windows and blue shutters. Chain link fence surround
image-house first floor red brick with red front door and two front windows on either side. Second-floor light blue paneling with three windows and blue shutters. Chain link fence surrounding the house.

 

 

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What doesn’t kill you…

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Image- That which doesn’t kill you gives you a lot of unhealthy coping mechanisms and a really dark sense of humor.

I’ve mentioned recently that I have been sick with bronchitis, which is difficult by itself. As someone who has asthma and chronic bronchitis, I can say that it sucks. It always makes me wish lungs were not required to live. I say this from experience… I’ve gotten bronchitis 1-2 times a year for as long as I can remember. 

And having bronchitis on top of IC and migraine and etc is a whole other challenge. 

But what happens when you get a new medication and you have a terrible reaction to it on top of being sick and having a chronic illness? Because that is exactly what happened to me this week. My doctor prescribed me a new inhaler called the Combivent Respimat inhaler…seemed innocent enough. It is a short-acting inhaler that helps to relax the lungs. 

On Tuesday, February 21 at approximately 4:30 pm I used the inhaler and then went to see a friend for a bit. We went to a chill place that is semi-noisy which has been known to give me migraines but I went prepared with earplugs and my sumatriptan, a prescription migraine abortive. We didn’t stay very long. I took a triptan around 5:30 because I felt a migraine coming on…but I had no idea of what was to come. 

I do have chronic migraines and I’ve had them for many years. But what came next was like nothing I have ever experienced in my entire life. I finished up with my friend and went to Aaron’s to eat but by the time I got there my migraine was hitting hard so I got my migraine hat (ice pack to wrap around the head) and laid down. It felt like there was 20 tons of pressure on my entire skull, which I’ve never had before. Not only that but my eyeballs hurt like they were ready to pop out of my head. And even my hair hurt! Yes…my hair… Like each individual strand. 

This migraine made my regular migraines look like fun little headaches…which they are not. -Rachel Bob

I’ve read stories in the migraine community about people’s hair hurting but I personally never experienced it…until now. It was excruciating…pure agony. I have a lot of hair, waist length, and it’s super thick Jew hair. There were a few points where I was just ready to chop it all off because I couldn’t take it. 

Aaron said “How is that possible? Hair has no nerves.” I said “How is anything possible? I don’t know. All I know is what I feel and my freaking hair hurts.” 

Aaron tried to get me to eat. And usually eating helps reduce my migraines but I could not eat because it physically hurt me to chew. At that point, I thought I might have to go to the hospital if this didn’t let up. So I decided if it didn’t improve by morning I would have Aaron take me to the hospital. 

One ‘good thing’, was that during this agony my body didn’t seem to register any other pain I was in… like IC or PFD. I was awake most of the night because I couldn’t sleep due to the tremendous amount of pain I was in and I was going to the bathroom frequently, but this time it wasn’t because of my IC. I think it was because my body was trying to get that medicine out of me. I went to the bathroom at least 10 times which is more than I usually go at night time. And every time I went…it didn’t hurt when I peed. Which was a miracle, but also, I’ll gladly take my IC and PFD pain over the agonizing medication migraine any day. 

Eventually, around 4 am I fell asleep. I woke up around 8 am with a lessened migraine…thank goodness. But I was beyond exhausted. I ended up canceling my day, which was therapy at noon and my class in the evening. Also sometime on Tuesday night when in the throws of that torturous migraine I realized I had a 2-3 page paper due on Wednesday and I was like well I’m not going to be able to do that now. 

I guess fortunately for me, I now have OSWD (Office for Students with Disabilities) Accommodations so that I can turn in assignments late and miss class if I’m in a lot of pain. So I emailed my professor to let him know that I will be turning in my paper late and missing class. It’s kind of “funny” because when I got those accommodations approved I said…yea but I won’t ever use them. And then the very next week here I am using the heck out of them. But with good cause. It’s not like I am making this up.

Because you can’t make this shit up. And it goes on. So then I wake up at 7 am expecting to feel better for my class at 9:30 am and guess what? I’m not better. My eyes hurt so badly I think they are going to just fall out…I can barely keep them open and they are puffy (not swollen shut but puffy). I still had a migraine as well, although nowhere near a bad as it was. But my eyes hurting came with extreme light sensitivity. Along with stomach pains and some vomiting. Okay..well guess I’m not going to this class either. I thought I really might have to go to the hospital. 

So I called my doctors office and left a message. I actually did send my doctor a message on Wednesday as well to let them know what was happening. They called me back a bit later that morning and said I should come in at 2:30. So instead of going to the hospital, I opted to go see my doctor. 

My doctor was shocked that I had a reaction this strong to this particular inhaler because it’s very similar to two of the other inhalers I already use. But I’m not surprised because that’s just me. If there is going to be someone who has a reaction to something that most people are fine with…it’s going to be me. I am so sensitive to everything. It’s a wonder that I am still alive. 

And then today I had my annual appointment at the gynocologist…yay…who doesn’t love that? meh. But I do love my gynecologist, I’ve been with her for almost a decade now. Unfortunately, today was my least favorite visit…were any of them my favorite? lol probably not. This is my first time back in for my annual with the diagnoses of interstitial cystitis (IC) and pelvic floor dysfunction (PFD). 

I had been nervous about the speculum and discussed it with my physical therapist. She told me I can tell my gynecologist that and request no speculum because of the PFD. So I talked to my gyno about it. But unfortunately, I have a history of pap smears that come up as pre-cancerous so she needs to really get in there with the use of the speculum. How can I argue with that? So she used the smallest one they had and it was very small, about the size of her pinky which is drastically smaller than I’m used to.

Unfortunately, it still hurt so freaking badly. And even more so afterward…I am now in the midst of a terrible flare. My bladder is spasming and freaking out. And my poor pelvic floor is just in agony. I know it was for a good reason…but FML. Haven’t I had enough pain for one week??? 

what-doesnt-kill-you-makes-you-wish-it-did
Image- What doesn’t kill you makes you wish it did.

For those of us with chronic illnesses, this kind of stuff isn’t uncommon. Maybe my week was a bit more unfortunate than most. But this is our lives. It doesn’t kill us.. allegedly it makes us stronger…or so I’ve heard. 

Having a week like mine or even just a day with something more minor than what I experienced, can really set back those with chronic illness in ways that are hard to predict. It can cause flare ups that last extended periods of time or weaken their already weak immune system so they get sick. 

I didn’t even mention the stress of it all. Not just the stress of having the allergic reaction to the inhaler but having to miss my classes, which I hate doing. Stressing over whether or not I should go to the hospital. The stress of not being able to open my eyes or eat. And then going to the gynecologist is stressful by itself. The speculum. The flare. And so on. 

For people with chronic illness, stress is usually one of the biggest triggers. So how do we come back down from that? We have to remember to take care of ourselves. I committed to self-care and continue to do so. And we can all just keep in mind that…

what-doesnt-kill-you-makes-you-strong-except-bears-bears-will-kill-you
Image- What doesn’t kill you make you stronger. Except for bears, bears will kill you.