At least you have your health… oh wait.. no you don’t… my bad.

image-Sorry you're sick again and have invisible chronic illnesses and are so behind in school ... but at least you have your health.. oh wait..
Sorry, you’re sick again and have invisible chronic illnesses and are so behind in school … but at least you have your health … oh wait…

The last two weeks have been rough. Reid, Aaron and I have been varying degrees of sick with a terrible stomach virus. It hit the two of them first and took me down last and hardest. Save the best for last??? ehhhh…. I spent this whole week in bed. Now I’m finally up and about. Trying to get back to life…No easy feat.

Seriously as if things aren’t hard enough… life seems to want to kick me when I am already down. And I just keep thinking…I couldn’t make this stuff up if  I tried. It is all just so ridiculous that it has to be true… because nobody has all the nonstop issues that I have had over the last two years…not just health, but also related to my family and other relationships. Not to say everything is always terrible … but I’m just saying..kick me while I’m down why don’t you…sheesh. 

First of all, I have been seeing a new practitioner named Ruth Kriz who is known in the IC community. You can google her if you want to know more about her but I found out that she is local to the DC area and felt that it was a sign that I should go see her. Ruth’s theory is that IC is a deeply embedded infection or infections in the bladder wall; coupled with other health issues. I originally saw her last month for my initial appointment. I then had to get a ton of blood work and urine work done.

So I actually saw Ruth this past Tuesday, where she gave me the results of my lab work.  It turns out I have E. Coli in my bladder. Embedded infection anyone??? mhm. I also have Mycoplasma pneumoniae, which is another kind of bacteria and it could be because I recently had bronchitis or can be related to the IC. Either way, Ruth is treating both. She is treating the E. Coli with the antibiotic, Bactrim and the mycoplasma with a herbal remedy called A-Myco. 

I am also deficient in Vitamin D, which isn’t surprising since my mom is as well. But Ruth said it is very common for IC patients to be Vitamin D deficient and that is bad because vitamin D helps us repair our body and heal our immune systems. So I will be starting on 5000mg supplement of Vitamin D. 

So…like I said I saw Ruth on Tuesday. After I left her on Tuesday I went to meet Reid at the bus stop and suddenly wasn’t feeling well. It hit me hard and fast..the stomach bug. I was freezing cold down to my bones but I was so hot I was sweating. Never a good sign. It was all downhill from there. Before any stomach stuff hit me, the fever hit me first. Unfortunately, I have had to postpone the start of all my new meds because of this stomach bug.

I do think I had it the worst of the three of us because my body is already compromised from the E. Coli and other health problems. There was a day in there where my fever was slightly above 100 and I struggled to keep it down. It was beyond miserable for me… Neither Aaron or Reid had a fever, but they didn’t have infections to fight off like I did. 

 

Having this stomach virus didn’t do my health any favors as well..that’s for sure. I had physical therapy today. I didn’t go last week…because..well…sick. And I was so tight…All over. It was just insanely painful..in a whole other way than usual the usual painful.

Not just because of the stomach virus but because of my health, in general, this has been a very difficult semester for me. I have really struggled to keep up with my work. At this point, I feel very behind. I keep all my professors in the know about what is going on with my health and they are all very understanding and flexible with the due dates for my assignments…which is great and super helpful for me. But at the same time…it feels like failing. This is just for me personally. I would never judge another person who needed more time on assignments… I, of course, am much harder on myself than I am on others.

I am a perfectionist and an overachiever. I love school so much that I like to say that I’m too school for cool instead of too cool for school. Being behind and struggling like this feels like a failure on my part. Somewhere in my brain, I can hear my logical self saying don’t be silly this isn’t your fault you are doing the best you can. But in my heart, I just feel heavy and disappointed that I let it get to this point. I am that student who finishes all the work first…almost annoyingly early. That’s me. And now I’m struggling to even get my work done at all. Nobody is faulting me for it. Even my academic advisor is on my side, supporting me through this. It’s just hard to feel like I am failing when normally I wouldn’t be. 

It’s yet another part of me that I have lost…along with everything else. This summer I have to rest and take care of myself because in the fall/spring I will be doing an internship and taking classes. I need to be okay enough to do all of that. 

I have no idea what will happen once I start the antibiotics for the E. Coli. I don’t think that will magically cure me…I’m not that deluded. Besides, I probably have another infection underneath of that one. But I am curious to see where this road will lead me…Hopefully to one of better health- physical, mental, and emotional. I look forward to it… and to the possibilities the lay ahead. You know what they say….

image- what doesn't kill you makes you cranky strike out, stronger crossed out, pissed off crossed out, stronger crossed out, grumpy crossed out, stronger (it may take awhile but you'll get there)
image- what doesn’t kill you makes you cranky strike out, stronger crossed out, pissed off crossed out, stronger crossed out, grumpy crossed out, stronger (it may take awhile but you’ll get there)
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What doesn’t kill you…

that-which-doesnt-kill-you-gives-you-a-lot-of-unhealthy-coping-mechanisms-and-a-really-dark-sense-of-humor-76ca0
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.

Thanks, Bronchitis

I woke up recently with a sore throat. And I know what that means… I’m getting sick. Getting sick when you are already sick is the worst.  For me it goes something like this:

  1. sore throat
  2. stuffy nose
  3. post nasal drip
  4. cough
  5. drainage into lungs
  6. bronchitis
  7. lung spasms
  8. misery
  9. bladder pain
  10. more bladder pains
  11. …deathhhh

This has been the pattern my entire life due to the fact that I have chronic bronchitis. I can also get bronchitis from people, but I have never given it to anybody…it’s really jacked up.

When I get bronchitis my medicine bag fills up with… 2-3 inhalers (to be fair I always carry at least 1-2 inhalers with me for my asthma anyways, but when I have bronchitis my doctor might add on a third depending on how bad it is), antibiotics, steroids, cough syrup with codeine (to stop my lungs from spasming and aching), and non-Rx meds as well…like cough drops, Mucinex and ibuprofen. It really is just so much fun. This is an annual thing for me, no less than 1-2 times per year.

Last winter I had bronchitis, and of course, I had a terrible IC flare up when I caught a stomach virus from Aaron’s son, Reid. He had the bug for maybe a day or two and he was fine, but he was five years old at the time and much better off – healthwise. Whereas I was already sick and my health was extremely compromised. I just remember laying in bed unable to move… my bladder was on fire and flaring up, my stomach was hurting so badly because I needed to throw-up and my lungs were spasming and aching too. It was just a huge hot mess. It was an unfortunate experience that I never want to experience again. 

Bronchitis impacts my IC because I have to take so many medications that inevitably one, some or all of them hurt my bladder in some way, shape or form. -Rachel Bob

When a person with chronic illness(es) gets sick on top of their chronic illness it puts their health in dire straights. It’s much harder for us to bounce back to our normal homeostasis due to our compromised immune systems. So a person without a chronic illness might get the same cold as me…miss a day of work or school, sleep 10 hours and wake up feeling better. I miss those days.

I sleep 10 hours and wake up feeling even worse because my body can’t fight off the cold and then my body immediately turns it into bronchitis. Every. Freaking. Time. I can’t remember the last time I got a cold and it was just a cold. Because for me a cold = bronchitis.

Because of my chronic illnesses and my diet, I am very limited on what I can take when I am sick with a cold and/or bronchitis. Cough drops, like Halls, which before I was diagnosed with IC I used to buy by the pound when I had bronchitis….they hurt me now. They have ingredients in them that actually hurt my bladder and make it burn something fierce when I pee…but they effectively stop my coughing. 

While I have been able to find herbal cough drops that help, the issue ends up being that when my bronchitis is at its very worst, herbal cough drops don’t suppress my worst most productive phlegmy cough…only Halls do the job. I have tried so many different things as a chronic bronchitis veteran… So then I have to decide…what’s more important, my bladder or my lungs? I have to pick my poison. And believe you me…I am not the only chronically ill person who has to make these kinds of choices. 

Deciding to treat one illness at the expense of another is just part and parcel of being chronically ill. – Rachel Bob

I have to check the ingredients of everything I put in my body, it’s frustrating. I can’t just buy chicken noodle soup because it has ingredients in it, like onions, pepper and what not, that I can’t eat. Which means I have to make it myself. And while I have become more adept at making my own food from scratch recently due to my Keto IC diet, when you’re sick… you don’t really feel like making food because…you’re sick. Although I am fortunate enough to have my mom and Aaron who are always happy and willing to make me food I can eat.

Being sick when you are already chronically ill is like hitting the jackpot of crap.

Side note…I recently went to see my doctor for my bronchitis.  She looked at me and said you look like you’ve lost weight. she looked at my chart. But you’re the same weight as before…you’re stable. She looked up at me with a semi-quizzical gaze… you look like you’ve lost about 10 pounds. I told her about my new diet (that I cut out carbs and processed foods) and how I was trying to be more alkaline for the sake of my IC. She nodded in understanding. That’s it that. You’re less puffy…not as inflamed then.

I want to take a second to just soak that in. Less puffy. Less inflamed. 10 pounds. 

Prior to going to the doctor, I thought I might have lost some weight, but I don’t weight myself so it’s difficult to gauge if I actually did or did not lose weight. But usually, I can tell by my waistline. I lost about an inch around my waistline…which is a lot. I lost about an inch of inflammation. That’s ridiculous and fascinating. 

It brings up so many questions. Was I that inflamed because of my IC or because of my diet? Or both? Probably both. The Standard American Diet (SAD) is so acidic, so is it any wonder that so many of us have chronic illnesses nowadays. Although prior to the Keto IC diet, I was on the IC diet which was still pretty alkaline…before I was diagnosed with IC…I did eat the SAD and that’s probably what led me to where I am today…along with millions of other people. And the Standard American Diet is pretty sad…I think SAD is the perfect acronym for it. 

But just thinking about it… I look like I lost 10 pounds… when it was all just inflammation, it makes me wonder about all the people who are actively trying to lose weight and could easily lose inches if they just ate a less acidic more alkaline diets. 

Maybe my lungs are inflamed and angry right now…but at least the rest of me isn’t…score! 

 

 

image-bronchitis-is-my-least-favorite-dinosaur
image-bronchitis is my least favorite dinosaur

Raising awareness for Bronchitis my least favorite dinosaur

#bronchititisdinosaurawareness