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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I hope your antibiotics cocktail doesn't backfire, causing you to conceive and become an unwitting host to super-bacteria

Laughter is the best medicine…or is it?

I hope your antibiotics cocktail doesn't backfire, causing you to conceive and become an unwitting host to super-bacteria
I hope your antibiotics cocktail doesn’t backfire, causing you to conceive and become an unwitting host to super-bacteria

They say laughter is the best medicine…. but is it? Because recently, I’ve been in a lot of pain. I thought something was wrong with my right kidney. Went for a renal ultrasound last Monday and finally got the call yesterday saying nothing was wrong. Along with a serious attitude from my urologist. Gee…thanks. I hate my (now ex) urologist. 

Help wanted: New urologist who is nice and caring. Believes me when I say sometimes is wrong. Believes me when I say I have layered infections and doesn’t scoff at me when I tell her about my new IC practitioner who they have never heard of.  

Meanwhile, back with my IC practitioner who cares, Ruth…she got the results of my pathogenius urine culture. It was … colorful, to say the least. They found not 1…not 2… not 3…but 7 bacterias. Yes, friend, I said seven. Remember when I had E. Coli? Well, the E. Coli went away and then underneath of that there were 7 more delightful infections

36% Lactobaacillus johsonii -This is a healthy bacteria for your gut and has zero business being in the bladder.

31% Ureaplasma urealyticum – This is very commonly found in IC patients. The number was probably higher but I was recently on the antibiotic azithromycin (also known as zpack) for Bronchitis which is often used to treat ureaplasma. The ureaplasma can be carried and given back and forth by sexual partners. So in this situation, Aaron will have to be treated as well. That does not mean for sure he has it but really to prevent me from getting it again, he will be on a short-term (one week) dose of antibiotics. 

15% Streptococcus equinus – nobody likes strep. bleh.

2% Leuconostoc citreum 

2% Finegoldia magna

2% Lactococcus lactis

2% Acinetobacter radioresistens

So last week Ruth prescribed me more Bactrim to help me out until she could see what infections I had. And as we can see listed above…I have a lot. I will finish out my two-week dose of Bactrim and also she is starting me on two more antibiotics: minocycline and nitrofurantoin. I really don’t relish this process. Being on all these antibiotics isn’t great… but neither is being in so much pain from all these infections. I asked if it was possible that any of the infections could have traveled to my kidney. She said that was very possible. 

Here’s the thing. My urologist…did a renal ultrasound and the most basic urine culture ever and found nothing. nada. zip. zilch. She made me feel like shit about myself. If I didn’t have Ruth on my side… I would have felt hopeless. I knew the pathogenius urine culture ordered by Ruth would show results…I didn’t realize how many results… but I knew it would. 

There are so many IC patients and patients who have chronic illnesses who are treated so terribly by the medical community. It’s just not right.

Our doctors who took an oath to first do no harm…but my urologist did harm. She looked at me like I was insane when I told her what was going on. She made me feel less than. 

But I am not less than. I know my body and I know when something is wrong. And I know I am not alone in matters like this. This happens far too often. It’s really just unfair…more than unfair. It’s ridiculous. Ruth said something akin to I’d like to give these doctors IC for awhile and see how fast they end up in the ER from all the pain. They have no clue what it’s like to be in so much pain and for us to look to them for help only to be brutally rebuffed time and time again. We don’t deserve that. We deserve to be heard. Because what would have happened if I didn’t have Ruth on my side? My urologist would have just been like.. well nothing in your urine and nothing in your kidney…See ya next time. And I would have been sitting here unaware that I have 7 infections and nobody to help me. Which is such a bummer to think about. So let’s not. 

So on a completely different note… I had to get a TB test for my recently acquired internship…so the good news is… I don’t have TB. I am, however, still riddled with other diseases…womp womp lol.

And I’m on summer vacation. It’s …. yeah. weird. I have nothing to do. I’m not used to not working. I feel very useless. I’ve been reading. I have a nice mix of novels and social work type books related to my specialty that I am working on. But yea…besides that I have been going to a lot of doctor’s appointments, picking up Reid from school, hanging out with my cats 💗, ummm… watching stuff on Netflix. I really miss working right about now.

So is laughter the best medicine? For a lot of things…but not for infections. But I do often lean on laughter and humor to get through hard times. I’ve always said laugh or cry. Jews often use humor to get through hard times…that’s just how we Jew it. And I think that’s why I often use the Someecards in my blog posts because they make a great point and they are funny. And I shall leave you with this…

what shall i get for the girl who has everything? antibiotics
shall I get for the girl who has everything? antibiotics

Antibiotics and migraines are all the fun.

Why aren't side effects ever fun? They are never like these meds might cause you to have a party in your pants. No instead it's like nausea and dizziness.
Image- Why aren’t side effects ever fun? They are never like these meds might cause you to have a party in your pants. No instead it’s like nausea and dizziness.

I finally got over that terrible stomach virus and started my antibiotics (Bactrim) on Wednesday, April 12th. It has not been without issue though. I am a very sensitive being and I do get all the best side effects…. nausea, stomach aches, mild diarrhea. You know all the stuff I just had when I had that stomach virus… sigh. And I’m sure the side effects are worse now because I literally just had that virus too and barely had time to recover from it before I started the antibiotics.

Needless to say, the last two weeks has thrown my Keto diet  (I am still on the IC diet though) out the window with a vengeance. When the stomach virus hit me…I immediately started on sick food: saltines, ginger ale, homemade chicken soup, bananas, applesauce and the like.

I have now been on the Bactrim for 5 days…have I noticed a difference in my bladder??? Sometimes… sometimes I don’t. So it’s hard to tell. But I am only 5 days into a 2 week round of antibiotics. Only time will tell…Ruth tells me I should notice a difference but maybe it’s just hard to tell because of all the side effects I’m having.

I know the Bactrim will take care of the E. Coli… but who knows what else is in there. Ruth thinks there is another infection underneath the E. Coli. And I will be doing a test for Lyme’s Disease, which is from a tick bite…the test is called iSpot…it’s a blood test. I’ll be getting the blood drawn for that in May because I need to be off antibiotics for at least two weeks before they can test the blood. 

It’s difficult for me to plan my summer when I’m so unsure where my health will leave me a month…let alone next week. But I will say this… I will plan on resting as much as possible this summer. Not pushing myself too much or doing too much. I will start an exercise routine that isn’t too strenuous and that my physical therapist, Jen, will help me to plan out so that I don’t hurt myself further. I used to do yoga almost daily before I was diagnosed with IC. But once the IC got really bad it just became too painful to continue doing. So we shall see what happens…..

In others news…My physical therapist and I decided to take a break from pelvic floor therapy (PFT) while I am on antibiotics to see if there was any noticeable difference because it would be difficult to tell what improvements are happening if I am also doing PT.  So instead we decided to work on my migraines… I actually just got back from that a little while ago.

I will tell you this… I prefer the PFT, which sounds insane…because that’s internal PT that hurts so much. But this PT was like nothing I’ve ever experienced. I have trigger points all up and down my shoulders, neck, and head. Well…of course I do! Because I have chronic migraines…Duh! At one point she was pressing on a spot on my shoulder and it hurt so incredibly badly that I could feel it up in my temple. But she said that was a good thing because it meant that it was something we could work on… I was like…oh good…

Of course, it’s good. I know it is. But wow…I just did not expect it to hurt so incredibly much. It was just beyond brutal in ways that I can’t describe. It left me dizzy and disoriented. Luckily I don’t drive myself to PT…I always take Uber. My entire head, neck, and shoulders hurt… just like any other PT session. 

Also, I have increased my Topamax (aka dopamax), which is a migraine preventative, to the max dose- 100mg/daily. Which, of course, comes with its own side effects. Nothing is without side effects these days. Side effects like feeling dopey…hence the name dopamax. Forgetfulness, issues with word recall and understanding words…which is great to have when you’re in grad school. I don’t need words to write papers…nah. That’s silly. /sarcasm. 

image- My excuse for being brain dead is called Topamax. What's yours?
My excuse for being brain dead is called Topamax. What’s yours? Topamax aka dopamax

 

This semester can’t be over soon enough…Just two weeks left of this semester… I can and will get through this. This has been the hardest most frustrating semester I have ever experienced. I am not sure I will get through it with my sanity intact but as long as  I get through it… that’s the best  I can ask for at this point. I have a ton of school work to get done so I probably won’t write any new blog posts until the semester is over… but I’m sure you understand 🙂 xx

Image- Anyone can give up. it's the easiest thing to do but to hold it together when everyone else would understand if you fell apart... that's true strength
Image- Anyone can give up. it’s the easiest thing to do but to hold it together when everyone else would understand if you fell apart… that’s true strength

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)

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??? 

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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.

Keto is neato…hopefully

 

***This diet is not for everyone. Everyone is different and may have different needs. I am trying this because I am going in with the hopes that it will improve my health (IC and migraines). I will keep track of what happens here on this blog. Please read this if you’re unsure what the Keto IC diet is and want to learn about it***

The Ketogenic Diet

“The ketogenic diet is a high-fat, moderate-protein, low-carb style of eating that has powerful health benefits.” – Maria Emmerich, The 30 Day Ketogenic Cleanse

Keto was originally developed in the early 1920s to treat epileptic seizures, but once antiseizure meds became available the diet fell out of favor. But more than 70 years later, it was rediscovered as an alternative to pharmaceuticals. Which is always interesting because that is never what the pharmaceutical companies want.

Not too long ago, I met a woman who had a DeafBlind son and he used to have over 500 seizures a month. He was placed on the ketogenic diet by his doctor and that number drastically dropped to less than one time a month. Wow! That’s impressive.

I won’t get into great detail of how keto works within in the body. But the goal is to get the body to metabolize fat rather than sugar.

The health benefits of keto are:

  • improves brain health and energy
  • eliminates migraines 
  • improves mood
  • controls epilepsy and Alzheimer’s
  • decreases risk of coronary artery disease
  • Eliminates chronic pain
  • Eliminate Candida (yeast overgrowth)
  • Eliminates acne, eczema, and dandruff
  • Eliminates rosacea
  • Eliminates asthma and sinus issues
  • Eliminates acid reflux
  • Starves cancer cells
  • improves fertility

Migraines, chronic pain, rosacea*, and asthma are all chronic illnesses I have. It does not specifically say IC, nor has there been any official research done on the impact of keto on IC. But from the research that I have done, Keto for IC warriors has been really hit or miss. Some people who have IC have great success with keto, while others do not. But that’s one of the caveats of having IC; everyone is different.

*Rosacea is a chronic (face) skin disorder that can form in redness on the cheeks/nose/chin/forehead, small visible blood vessels on face, bumps or pimples on face. It cannot be cured but it can be taken care of with proper treatment and non-irritating face products. So if you ever wonder why I, or other people you know, look so red that’s why. Or why I turn red so easily…that’s why.

“It’s true that IC is a condition that manifests differently in each person…even if a treatment works 95% of the time, some people won’t gain any benefit from it.”- Nicole Cozean, The Interstitial Cystitis Solution

So the biggest thing for me to think about is how to successfully merge my IC diet and the Keto diet. It’s complicated. There is only so much overlap. For example, I eat a very bland diet because of my IC… no spices, hot sauce, pepper or onions. Many people who do keto love those things because it helps them diversify their limited cuisine.

Switching to a limited diet, in general, is difficult. Giving up foods for IC was a challenge, but not impossible because it was for my health. Even after almost two years of this diet, there are still days when I just wish I could have a glass of orange juice or eat something with onions in it. I never really liked onions, but I didn’t realize how much stuff they were in until I couldn’t eat them anymore. I gave up a lot of acidic foods. But not the carbs, processed foods, and sugars which were IC friendly. I held on tight to them. I couldn’t eat chocolate chip cookies anymore, but gosh darn it I wasn’t about to give up sugar cookies. I might not be able to eat chocolate chip cookie dough ice cream but there was no way in heck  I was giving up vanilla ice cream. But now?

Now I’m ready to let go of carbs, sugar, and processed foods and make the change. The food I am eating is not worth the pain I feel…at all. I am too young to be in this much pain all the time. I want my life back.

And I am so fortunate to have my support system, standing right alongside me while I do this. Aaron, my boyfriend, already does keto, so that’s an easy sell. My mom and Becca support me no matter what I do. And Shelby and Christine will be doing keto with me because there is power in numbers.

Will keto magically make me better? Probably not. 

Will it improve my general well being? I hope so. Only time will tell. 

Food as medicine

 

[Image description- blue and white plate with spaghetti and homemade meatballs with a side of zucchni] 

After months of debilitating pain and frantic searches for meds of all sort, I have decided to do myself a solid and change my diet completely. I will be cutting out processed foods, sugars, carbs. My body is literally screaming for help at the top of it’s lungs and if I didn’t listen to it… not only would I be making myself miserable, I would have nobody to blame but myself for my own misery and pain.


After a lot of time in the IC Support group online, it seems that the people who have the most success in remission are people who drastically overhaul their diets. And use food as medicine. Approaching food as medicine and looking at the body in a holistic way makes sense for people with a chronic illness, like IC. 

After a lot of time in the IC Support group online, it seems that the people who have the most success in remission are people who drastically overhaul their diets. And use food as medicine. Approaching food as medicine and looking at the body in a holistic way makes sense for people with a chronic illness, like IC. Very soon I will be drastically overhauling my diet; cutting out carbs, sugar and processed foods. I never thought I would get to this point. I never thought I could or would. But I never thought I would give up orange juice or spaghetti sauce but I did because of my IC. And the pain continues. So the question becomes…what wouldn’t I do to make it stop? Maybe those foods don’t harm me, but I suspect they do. And yes they are delicious, but is it worth the pain they cause? Some people think so.

I understand that we have backward values here in America. We worship the carb, comfort food, and the fast meal. But we are killing ourselves, our children and future generations as painfully as possible by doing this. Chronic conditions are cropping up in droves among 20-30 somethings. Is it a coincidence? It could be. But it’s unlikely. We are products of the DNA we carry, what happens to us in the womb and of our generation. All of these factors are starting to add up and create chronic illnesses en masse where there was once none.

And it really doesn’t help that the medical community looks at us as body parts.

It has often been my experience with doctors, that they want to focus on the part of you that hurts. Where is the injury? IC is in the bladder; therefore we treat the bladder. But hey, here’s a crazy thought, I am more than my bladder. I could just be a giant bladder with long red hair… sometimes I definitely feel like that but in reality, I am a whole person. And IC needs to be treated that way, holistically.

Here’s a prime example of the medical community looking at me and just seeing a giant walking talking bladder. When I was first diagnosed with IC, I immediately began researching food to eat. I found that celery is extremely beneficial to people with IC so I made it a habit it to put it into my food every single day. So what can this celery do exactly? It can lower inflammation, reduces uric acid in the urinary tract (which is good to prevent UTIs and good for the burning while peeing that IC warrior’s experience). 

So… Celery! Who knew? Not my doctor, that’s who. I went to her bi-monthly in the beginning and I went to see her and told her this information. And she told me she never heard that before. I was flabbergasted. I realize that the medical community doesn’t care to look at the body as a whole and doesn’t teach food as medicine, but in all her years as a urologist working with IC patients…nobody ever told her that? or she never went a did a little extra research on her own??
When you, or a loved one, have IC, Migraines or other chronic illnesses, it is so important to do the research. Doctors serve a role and they do the job to the best of their ability. IC is a systemic issue that needs to be looked at and treated holistically. 

 

Image result for celery joke
[Image description: Celery is 95% water and 100%, not pizza. Below the wording is a logo from NBC that says The More you know floating on a shooting star]

 

 

On the road…to getting lost

 

I just finished my first semester of grad school. Go me! In the Social Work program at Gallaudet University. But in the course of one semester…so much has changed.

The workload of three graduate-level MSW courses was a lot more than I anticipated. I had to stop working and doing volunteer work. I only worked part-time on a freelance schedule and same with volunteer work. But my health tanked and fast during this past semester. My pain levels for my IC and migraines were off the charts.

And just as all this was happening my insurance company decided I don’t need my IC medication, Elmiron, anymore. Elmiron is on the only FDA approved med on the market specifically for IC and because of that it is very expensive at $3 per pill and I take 3 pills per day. Elmiron coats the bladder to give it a protective lining and it takes months (3-6 months) to work; I was on it for about a year. My insurance claims that I said it doesn’t help me, which isn’t true, they are just making stuff up because they don’t want to pay for it anymore. It is now in the appeal process. So my urologist will have to convince the insurance doctor that I need this medication. Which is insanity since I don’t know this person at all.

And let me just say when I came off the Elmiron, I felt it. It hurt more than anything ever. First I was so tense I couldn’t pee and I would sit on the toilet for minutes at a time just trying to relax my pelvic floor muscles enough (that’s what physical therapy is for, will discuss later) to actually pee. And finally, when I did pee, it burst out like molten hot lava and I just felt like I had to be urinating out the protective lining of my bladder…for days.

But there is a natural alternative called Marshmallow Root; similar to Elmiron in that it coats the bladder with a gelatinous coating to protect it. Many people who can’t afford Elmiron or decide to go on a more natural path, use Marshmallow Root instead. I have been taking the MR capsules 2 capsules 2x/daily. and drinking MR tea. The pain from coming off the Elmiron has subsided, so I’m just back to my usual pain.

I don’t know if and when my insurance will decide to approve me taking Elmiron again but I’m not sure I want to. I think I might want to stay with MR for awhile and take a more holistic approach. Which leads me to my next plan of action…drastic lifestyle diet change

My health is in peril. Clearly, whatever is happening, my body is screaming at all full force for help. And I have to listen because I can’t live this way.

 

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[Image description-if you listen to your body whisper, you won’t have to hear it scream]