Valentine’s Day: Chronic Illness Edition

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Image-Valentine’s Day: Chronic Illness Edition. Below title is a large red heart with various pills inside of it.

I’m going to be honest with you here… I have never liked Valentine’s Day. I think it’s a contrived holiday that was made up by the greeting card companies and blah blah blah… you know the spiel by now. But last year was the first Valentine’s Day I’ve ever celebrated that made me somewhat rethink my stance.

Aaron, my boyfriend, and I had been dating officially for one month on Valentine’s Day…no pressure there lol. And unofficially dating for about two months. What he planned for me was so amazing that I can’t not tell the story. I’ll try to keep it short.

He planned a surprise…he likes doing that. So he picked me up and took me to his place, in Washington DC, where he cooked me an awesome dinner of spaghetti and homemade meatballs. But maybe it was too much excitement, but I got a migraine and felt terribly ill. I could barely eat, and we were supposed to leave to go on a weekend trip to a surprise location. He told me to rest, and if I wasn’t feeling well enough, then that was okay. I was not about to let this surprise get laid to waste. So around 8 pm which was much later than anticipated, we headed out to our destination about an hour away in Baltimore, MD.

We arrived at the Four Seasons Hotel. Swanky. When we got out of the car, we gave my bags to the doorman, and I immediately noted that he didn’t have bags. I realized he was already here earlier in the day. Which is crazy, because I live directly in the middle of Washington DC and Baltimore. So he drove to Baltimore to set things up, came to pick me up, took me to his apartment in DC and cooked for me and then we drove to Baltimore.

We get upstairs to the room, and he tells me to wait outside for a couple minutes. I wait for the longest couple minutes ever. Finally, he opened the door, and I walked into this…

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Image- picture of darkened room. Tea lights lit up and in the shape of a heart on the bed.

It was one of the most overwhelmingly emotional moments of my life. There were tea lights everywhere. It was so thoughtful and amazing that I was left speechless. 

He thought of everything down to the smallest details. I love the colors pink and silver. So the (fake) rose petals were pink and silver. And he found this adorable stuffed unicorn who was pink and silver. I later named her Doris. The shirt lying on the bed says Always be yourself unless you can be a unicorn then be a unicorn instead.

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Image- large white bed with two pillows at the head of bed. pink and silver rose petals scattered all over the bed. Eighteen tea lights lit up and in the shape of a heart. At the head of the bed is a t-shirt, writing is obscured and a small stuffed pink and silver unicorn sitting on top of it.

The next day he planned for us to go get a couple’s massage. Unfortunately, an unforeseen thing happened when the second we walked into the massage parlor and I was immediately assaulted with the scents of numerous candles. It was an instantaneous migraine. Who could have predicted that? But It was a really thoughtful gift anyways. I don’t remember last years Valentine’s day by the migraine I had, I remember the feeling of walking into the room and being completely and utterly overwhelmed and amazed by the effort he went through to make this such a special occasion. 

But that was then…this is now. How can this Valentine’s day ever compete or compare to that? The simple answer is…it can’t and it shouldn’t. 

I can’t always look to the past as an example of how the present should be even though it’s easy for me to remember the Rachel I used to be and think if only I was that Rachel still. No matter what happens, that Rachel as I knew her…is gone. I am forever changed by my chronic illnesses. 

Which brings us to present day- Today I went to physical therapy, it was excruciating and brutally painful in ways that a person who doesn’t go to physical therapy for Pelvic Floor Dysfunction can’t possibly understand. And my lower back is just in knots from stress, and my physical therapist was working on some trigger points to help with my lower back pain and now my back is spasming out in a way that is just too painful to describe at this time. 

Chronic illness change lives. It makes us feel like we are out of control. We survived the holidays and now it’s Valentine’s day. And maybe many of you don’t particularly care or maybe you are like me and were made to care by your loved one who showed how special it can be. But when chronically ill it’s all too easy to feel inadequate. 

You go out to eat a nice restaurant… no wait can’t do that because of the restricted diet your chronic illness has you on. You enjoy chocolates and candies that your loved one gave you… no wait can’t eat chocolate and candies either. Okay well, you appreciate the beautiful flowers they sent you at work… but wait…flowers cause a severe migraine and you quit your job because of your health. But certainly, they can light some candles and give you a nice massage with essential oils…no wait…migraines again. How about enjoying a little intimate time with your sweetie… oh you’re still in excruciating pain from your insert chronic illness and physical therapy… right. 

Okay, so what the hell can we do?? Isn’t that how it feels? When the world is seemingly buying chocolates, candies, candles and other stuff that we can only dream about; how can we ever hope to enjoy Valentine’s day again?

Well maybe you can’t subscribe to a classic Valentine’s day anymore, but you can certainly customize it for yourself and your loved one. All you need is a bit of creativity and thinking outside of that darn box that we have been stuck in for so long. 

So…Valentine’s day is tomorrow, but I’m sick still, my bronchitis is still holding on to my poor aching lungs for dear life, while my bladder, pelvic floor, and lower back hurt in some incredibly agonizing ways.

But Aaron and I already discussed and planned for a low key Valentine’s day; there will be no fancy hotel and massage this time around. But there will be Keto IC friendly pancakes, a blanket/pillow fort that we can cuddle up in, some romantic comedy classics and some other stuff which I can’t say because it will ruin the surprise. 

So is this the Valentine’s day of my dreams? Probably not. But I’m still pretty excited for what Aaron and I have come up with together…and that is all that matters. 

And if you are alone on Valentine’s day, show yourself some self-love by doing something nice for yourself…a nice Epsom bath or buy yourself something you love to (and can) eat. Just remember to be kind to yourself. 

 

 

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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! 

 

 

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image-bronchitis is my least favorite dinosaur

Raising awareness for Bronchitis my least favorite dinosaur

#bronchititisdinosaurawareness 

 

Keto IC diet update: one month

***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***

Overall, the first month of my Keto IC diet has been going well. I have stayed strong on the diet. There have been more than four handfuls of times where I wanted to just shove tons of sugary goodness and carbs into my face. But I have managed to resist and I am still going. So that’s something.

 

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Image: I didn’t quit! Yay! 

 

I have really had to take control of what I put in my body. It’s hard. At Aaron’s behest, I downloaded an app called My Fitness Pal which helps me keep track of what I eat for the day and it even tracks my macros. I have to stay on top of my macros, which are protein, fat, and carbs. Each day I am supposed to eat about 1,550 calories, although that is not what I am counting…it’s more of a suggestion. 

So what are my macros?

  • 78 grams of protein
  • 129 grams of fat
  • 19 grams of carbs

Each day I am supposed to reach these goals. It’s incredibly difficult for me to eat this much food in a day. I often find myself struggling to make my goals. Although I never have an issue eating 19+ grams of carbs lol. It’s usually from an avocado, zucchini or some other healthy carbs, not sugar cookies or anything like that. But it’s important to meet the protein goals because it helps to balances hormones and repair muscle.  And the fat provides energy, although it’s okay to not meet that goal exactly but it should be attempted. 

I also have had to increase my magnesium and potassium intake because people who do keto can easily become deficient. Within the first week or so I started getting really bad charlie horses in my legs so I quickly bought some potassium supplements, along with magnesium citrate supplements. The potassium supplements helped relieve the charlie horses..they are nayyy more.  

What kind of foods am I eating? 

My new breakfast favorite is a spinach omelet with hemp hearts, sprouts, and sour cream. It’s really tasty and filling too. Or If I don’t have a lot of time I will cut up an avocado sprinkle it with hemp hearts with a side of sprouts and sour cream. All of this is high in protein and fat. So that’s the theme for my food. 

I have become adept at making vanilla fat bombs. Yes…a fat bomb. Doesn’t it just sound amazing? Or maybe confusing….lol. It’s a tasty treat this is high in fat. It’s cream cheese, vanilla extract, a pinch of salt, heavy whipping cream and some kind of a sweetener like Truvia or Stevia. Blend all the ingredients together and voila! There are many flavors but I am more limited because of my IC diet. But people just doing keto can make all kinds of fat bombs with chocolate involved. Google it…they are good. I like to make sure I always have ingredients. 

Last week, I decided I needed to cut out more acidic food from my diet, for now, because I have been feeling overly acidic recently. Partially because I (probably) have an autoimmune disease and partially because of the Keto diet. When the body starts entering ketosis it starts excreting ketones through the urine. Which has been noted as feeling quite painful- like burning during urination…and this is from people who do not have IC. So I would venture to guess that my excretion of ketones is at least a smidge more painful than the average person since I already have that dang burning when I pee anyways. So for me, excreting the ketones…is really painful. But I think that reducing my overall acidity intake helps. 

And I got this new water bottle to further my alkaline process. This water bottle is nice because it has an ionizer and a filter, meaning it filters the water and makes it alkaline. So far I really like it. I tested the pH and it tested at almost an 8.5 pH compared to my Brita water filter which tested at a 7 pH. 

Along with the water bottle, I have decided to cut out red meat for awhile. Red meat is more acidic than chicken and fish. I’m really just trying to cut out all extraneous acidity.

One unfortunate thing did happen recently when Aaron brought home some Quest protein bars for me to try. He bought two kinds: Vanilla Almond Crunch and Cookies and Cream. Vanilla Almond Crunch is right up my bland-food-ally. But immediately I rejected the Cookies and Cream because it’s chocolate and I don’t eat chocolate as per my IC diet. He didn’t realize it was chocolate. I told him that anytime something says cookies and cream, that means chocolate, usually Oreos. But maybe I just know that because back when I could eat sugary food… I freaking loved cookies and cream. Sure enough, there were cookies that looked like Oreos right on the front of this protein bar. We looked at the ingredients and it said cocoa (processed with alkali).

I wasn’t completely sure what that meant, but I could easily see that alkali is similar to alkaline. So we googled it. And apparently, it’s a process in which most of the acidity is taken out of the cocoa, often done to Oreos. Fascinating. I was still hesitant but curious so against my better judgment and against my first instinct to stay away from it…I went ahead and ate 1/4 of the bar. It was so delicious and rich tasting. I eat a very bland diet and I don’t eat chocolate often or ever, so to me, this cookies and cream protein bar was straight up decadent.

Unfortunately, my body did not respond well to it. My stomach started hurting first. I think it was too rich for me. Seriously, I’m just used to having such a blah bland diet that this protein bar was too rich for me. And then… I got a migraine. Because alas, chocolate is indeed a migraine trigger

Quest bar – 1  Rachel Bob – 0

Well played quest bar….well played.

It’s only been a month so I can’t say for sure if I have seen any noticeable improvements in my health but I will stay the course on this Alkaline Keto IC journey and see where the road takes me. 

This diet is not easy…It is definitely not for the faint of heart. This is a lifestyle change that has shaken me to my very core. Well…that and having chronic illnesses. If you have a chronic illness and you are thinking about changing your diet for your health, don’t hesitate…just go ahead and do it. The longer you wait, the longer it takes to work. I have hope that this will work for me. It’s challenging but you know what they say…. 

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Image: What doesn’t kill you makes you cranky (crossed out) stronger (crossed out) pissed off (crossed out) stronger (crossed out) grumpy (crossed out) STRONGER It may take awhile but you’ll get there!

 

Self-care: A love story for the new year

Self-care – This was the word I chose as my one-word resolution for the new year. I resolved that I would actually and truly take care of myself this year because I need it. It’s not that I just want it..nope…I truly need it.

So here it is, one month into the new year and it seems like the right time for an update on how my self-care has been going.

I have been doing self-care stuff that I am not particularly fond of that I have mentioned before…like quitting my jobs, getting a rolly backpack, a cushion to sit on during class, the Keto IC diet, migraine glasses, alkaline water and diet, and so on. I don’t love doing all of these things, but I am doing them because they are the right thing for me and my body at this time. I make sure to take time out to rest, even though I feel like I should be doing something productive like school work…because…grad school.

So while other people out in the world might be floundering and forgetting their New Year’s resolutions right about now… I am thriving with mine. I can only hope that will continue to thrive and hold true to mine, even if I feel resistant against some of the stuff I am doing. I have to remember that I am doing it because it is best for my health at this time.

So yes… I have resigned myself to this. I have not decided if I can resign myself to this forever. I have moments where I get stubborn about it and decide to resist my inner self-care voice. For example, one huge challenge I have is the steps in Aaron‘s apartment building…they are very steep and difficult for me to go up and down. The other day I arrived and wanted to take all my stuff up, my school stuff and my sleepover bag. So I did that. Huge mistake. The whole time this was going through my mind… I can do this. I am a normal person. Normal people can carry some bags up some stairs. I used to be able to carry these bags up these stairs. I am normal. I am normal. I was about one-fourth of the way up the stairs when I came to my senses and remembered….I’m not normal. But it was too late. I had to keep going. So I decided to power through.  My second huge mistake of the day. Which at that point was the only way I was getting up the stairs because if I stopped for even a second I wouldn’t be able to get moving again.

By the time I got to the top I was beyond exhausted. And was completely ready to drop to the ground. That was not a good or wise self-care moment. Usually, I do much better than that. But there are just some times when I try to forget I am chronically ill and try to remember what it’s like to be normal Rachel again. I have to learn to let go of that. Self-care is remembering that I am not that Rachel anymore. And some self-love would be telling myself it’s okay that you aren’t that Rachel anymore, you are still Rachel. You are growing and evolving. Love yourself. Self-love is a part of self-care but it’s much harder to do.

And yes, as the title of this blog post says, this is a love story. You have to love yourself when you are doing intensive self-care. And I am learning to love myself through self-care. -Rachel Bob

It’s very difficult to love my body when it is changing in ways that I cannot comprehend. It’s difficult to love my body when it pains me daily and honestly often leaves me feeling betrayed. But part of self-care is not focusing on that too much because I can’t harp on that self-hate/dislike/whatever it is or it will just hurt me further. That’s where priorities come in.

Part of self-care is prioritizing. I have to really look at my life and my priorities and see what is important and what is excess. Anything that is excess will basically be cut from the to do list because I don’t have the energy for it. I have very limited energy and therefore I have to prioritize my life. My number one priority right now? (you might be able to guess this one) myself. And then there is grad school, my family which includes my mom, my four cats, Aaron and Reid, my support system and my blog.

It isn’t easy to take care of yourself. Anyone with a cat (dog/other pet) or a child… or in my case both… knows the struggle of being able to get some self-care time when you have all of these little people who constantly want and need your attention. When I’m at home and try to take a bath. I have no less than two cats in the bathroom with me at all times…usually they are telling me how much they need to be in the tub and that I should drain the water so they can do that. Or they are telling me how badly they need me to pet them. When I’m at Aaron’s, Reid is in constant need of attention which is to be expected because he is six years old.

But despite all the road blocks, and that is all they are…road blocks. I have to persevere and keep trying until I find success with my self-care. So when I do get to take care of myself what kind of stuff am I trying to do?

  • Remembering to breathe….2..3..4..
  • Sleep. I can’t emphasize enough how important sleep is to me (not just me), so I’ll say it again in all caps…SLEEP!!!  Sleep is the time for our bodies to rest and repair. It’s important. Getting a good 7-9 hours of sleep can be a challenge but it’s worthwhile if you’re on the self-care plan like me.
  • Taking long baths with Epsom salts and baking soda. I just bought Magnesium flakes which I haven’t used just yet but I am looking forward to trying.
  • Making time to see my friends who support me. Last semester I was so overwhelmed with school and pain that I never saw my friends and I think that was a huge mistake on my part. So now I am actively making sure to see my friends. Like my bestie, Becca…pre-grad school we hung out every Sunday. But once grad school hit we didn’t see each other for months and months. I think that only hurt my health more. So now I decided we will see each other at least every two weeks.
  • Learning how to cook for and feed myself in a healthy way that fits my needs and my diet
  • Taking a break and just resting – This can make all the difference between being in a lot of pain or being in more bearable pain.
  • Learning to tell people what I need – This is a big one. I think this is one that a lot of people with chronic illness struggle with. We don’t want to be seen as needy or a burden so we don’t tell people what we need. Or we think that by asking for something we are asking too much. Like when the lights go on and off suddenly that impacts my migraines. I get bright flashing lights in my eyes, it’s disorienting and I have trouble seeing. I have learned to ask people to let me know when they will turn the lights on and off. I didn’t used to do that because I thought it was bothersome and too much effort for the other person. I would just try to live with it, but why? It’s not that much extra work for them to be like Hey Rachel, close your eyes. Boom…done. And it saves me a lot of pain, which is always nice.

Self-care is so important for everyone, but especially those of us who are chronically ill. We need to take care of ourselves or we will not be able to function and participate in the daily life. Everything I do now is for the future. Is it hard? heck yea it is. Even with the label of self-care, it is still a challenge that I struggle with every day and sometimes I do it begrudgingly. But you know what… that’s okay. As long as I try to take care of myself …that’s all that matters.

 

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Chronically Humorous

If there’s one thing I know as a Jew, it’s that no matter what happens, we need to keep a sense of humor during the hard times or we will never survive until the good times. That’s factual Jewish lore…straight from the Jew’s mouth…errr..hands…well you get what I’m saying. You don’t have to be Jewish to have a sense of humor, though. Obvi. I am merely pointing out what has inspired me to keep the home humors burning. 

Recently I came across a small yellow smiling bladder pin, call the Urine Luck pin. How adorable and weird is that? There was also have a magnet with that same smiling bladder that says, Don’t Stop Relieving. Two things about that…1) How cute! 2) This company called I Heart Guts makes plushies, pins and more, of the human organs. So those of us with chronic illnesses can embrace our dis-ease(s)…if you’re into that kind of thing. Personally…I am. They have this adorable yellow smiling bladder plushie, that I one day hope to take a selfie with. Maybe it’s a stand in for my actual bladder and I want to show my bladder how much I love it…so what if it is? Nothing wrong with a little self-love.

image-teal-colored-bladder-plushie-with-two-button-eyes-and-a-slight-smile-on-its-head-is-a-large-bandaidAnd then I came across an IC bladder plushie that stole my heart immediately. It’s teal, which is the color of IC awareness. And there’s a little bandaid on it… it is just perfection. Someone posted it in an IC support group on Facebook and they said they made it. As soon as I saw it, I knew I had to have it. I sent her a PM and asked if she sold them and where I could buy one. On her adorable Etsy shop, StitchandStuffed. (I do love me some Etsy!) I bought it and I anxiously await its arrival. 

It’s no secret that I, and other IC warriors, have to use the bathroom a lot. I don’t know about them but I hate sitting on a cold seat. I always dread it. And then I saw this whimsical gem of aimage-toliet-with-a-seat-cover-seat-cover-is-pink-with-white-polka-dots-and-has-a-bow-on-the-top-left-hand-side toilet seat cover, and I said to my cat, Marzipan, “Tell me I don’t need that in my life, Marzipan!” Marzipan looked at me like I was crazy and said, “Heck yea you need it!” People who know me, know that I love polka dots and the color pink (among other colors). So how cute is this seat cover? I haven’t bought it… yet. But I can just imagine…having to pee yet again. Walking to the bathroom with dread bubbling up inside of me because I know it’s going to hurt and I hate sitting on a cold toilet seat. And then I see the toilet seat cover. How can I not smile?? It will keep my tush warm, comfy and it’s just cute. Plus, when people come over and they go to use the bathroom, they will be like…what the heck?? It’s the little things in life. A bladder pin, a bladder magnet, a polka dotted toilet seat cover… etc… Obviously, these things are not laugh-out-loud funny. They are amusing and add whimsy to life. But humor comes in many forms. We cannot take it for granted. 

Something else toilet related that gives me a good laugh is this ongoing schtick me and Aaron have going, toilet related, of course. He says he always puts the seat down, which he doesn’t. So he started taking pictures each time he put the seat down and so I started taking pictures of each time he leaves it up. When it is all said and done, I do reckon that we will make a lovely wall collage of these pictures. It’s something we always joke about and we always text each other the pictures of toilet seat up or down. 

But each day is a depressing new struggle that just seems to bear the weight of all the days before it. That is so…depressing! Who wants to hear that or feel that all the time? Not me. But that’s my reality. And if you read my blog post from yesterday then you will know that I do struggle with chronic grief. But that’s why I am posting this because I have more than just grief. I have humor too. I have to find the things in this world that are funny, humorous, silly and whimsical, to get me through. Like bladder plushies and pins.

They say that laughter is the best medicine. Well anyone who is chronically ill might disagree, if only because we all know that laughter will not fix or heal our chronic pains. But laughter certainly is a good distraction from the pain. So when I’m in a lot of pain I often turn on Netflix and watch something funny to keep myself amused and my brain occupied. 

Like I always say…laugh or cry. Yesterday I cried. So today I am laughing. 

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Image: A good laugh heals a lot of hurts – Madeleine L’Engle

🔯And this is for my fellow Jews and people who appreciate Jew jokes 🙂 🔯

image-cartoon moses walking through desert saying "this way follow me!" a group of people behind him. a female holding a map and talking to a man. Caption says After 30.5 years of wandering the desert, Mrs. moses secretly asks for directions.jpg
Image: Cartoon Moses walking through desert saying “This way! follow me!” Group of people behind him. A woman holding a map and talking to a man. Caption says After 39.5 years of wandering in the desert, Mrs. Moses secretly asks for directions.

 

 

Chronically Grieving

It can be said that people who are chronically ill are often in a perpetual state of grief. That we are constantly grieving our losses…our health, our food, our friends, our habits, our errands…our lives as we once knew them. 

And I will just tell you right now, all of that is completely true. I feel as though I am in a constant state of grief. In an emotional upheaval that will likely never be subdued. I miss being Rachel. I miss being me. 

I am being forced to create a new identity that I am unfamiliar with. I don’t know this person. This chronically ill version of Rachel, who is but a mere shadow of my former self.” – Rachel Bob

This Rachel, who can barely walk up a flight of stairs without feeling like she will collapse from the pain. This Rachel, who tries to make sure she has everything, but if she forgets something that is just 15ft away….she views it as though there is an ocean between her and the item because for me to get up and walk that distance is often incredibly difficult and tiresome. I always think of it like viewing a mirage in the desert. I see the item, like my water bottle, and in reality its just 15-20ft away.  That’s usually when I remember the pain I will be in just getting there, and then that distance suddenly becomes a vast wasteland between me and the water bottle that I want so badly. And I see it getting farther and farther away… until it’s completely out of reach.

Who is this person? When just a few months ago I was myself. I was Rachel. The Rachel that enjoyed walking and wouldn’t mind parking at a distance because I had the privilege of being able to walk. I miss being able to walk.

People keep telling me I have such an amazing outlook on life. But do I? What makes my outlook on life so good? Because I have this blog where I can vent or because I haven’t put myself out of my misery yet? And people tell me I’m handling this so well. But I don’t feel like I’m handling any of this well. I feel as though I am struggling to keep my head above water.

There are so many changes happening at the same time that it’s hard for me to get back up again, once I’ve fallen off that darn horse. Like… I’m requesting accommodations from the Office for Students with Disabilities for my graduate classes. Accommodations as simple as being able to turn in an assignment late, not come to class or leave class early. That seems like nothing, doesn’t it? Actually, it sounds kind of awesome… all those extra benefits that most students don’t have. But I just had to jump through a bunch of paperwork hoops and admit that I’m disabled and need accommodations. Am I disabled??? And if I am…is that such a bad thing? Or am I just human? Maybe we are too hard on ourselves…specifically, maybe I am too hard on myself.

I mentioned before in a previous post that I use migraine glasses, which help reduce my migraines immensely during my classes. Which is awesome. However, they aren’t my favorite look. I had to buy a rolling backpack, which might seem like a silly thing but to me it’s admitting defeat. And think about it…A rolling backpack represents the knowledge that I can no longer carry my bag for one reason or another. I can’t because of my health. That doesn’t make me feel better about it.

Aaron bought me a gel seat cushion to use in my classes because the chairs put too much pressure on my bladder and pelvic floor. It’s really comfortable, but it’s kind of bulky. It has a convenient handle on it so I can put it over the handle of my rolling backpack and not have to carry it. It decreases my pain levels and allows me to sit through class easier. That’s good, right?  In theory…yes. But all of these little things add up… requesting accommodations, the rolling backpack, the cushion, the migraine glasses, etc… I never needed these things before. Why now? Will I always need them? I don’t know. I am doing my best to keep my head above the water. People see me making these changes for myself and assume I’m adjusting well…that my resolution of self-care is a success.

But in reality, my IC and my migraines are constantly pushing me under the tide. To be sure, my IC is my main issue right now… the physical exhaustion and extreme pain I feel because of it… is just ridiculous.

It’s hard to understand if you don’t have a chronic illness what it’s like to be grieving constantly for your health. But I think it’s safe to say we all understand grief. We all have known loss in some form or another. The loss of a loved one is one of the most difficult losses there is. On July 29, 2016, I lost the love of my life, Mikey. He was everything to me. He was 18 years old and we were together for 18 years. I was 12 years old when I met Mikey, it was love at first sight. He was and will always be the love of my life. Don’t get me wrong, I love my cats so much. But there can only be one first love and Mikey was it for me. He was there for me through thick and thin.

The grief I feel over Mikey is so heavy that I feel as though I have to wade through it daily. This is deep and personal grief that I don’t share with many people, but I feel the need to share it now because I want people to think about a loss in their life that caused them grief.

image-black-dog-mikey-head-resting-on-front-leg-ears-perked-up-and-eyes-drifting-off-to-the-side
This is my all time favorite picture of him. Image: Black chihuahua/rat terrier mix dog with head resting on his paw, one ear pointed upwards and eyes drifting off to the side.

 

B9C42BB2-F98A-4ED2-A11D-986F3A2A4A74.GIF
Gif of Rachel and Mikey. Rachel kissing Mikey’s smooshy face.

So why am I telling this story? Because loss impacts all of us…grief touches all of our lives at some point in time. There are different kinds of grief, different levels of grief. There is the Kübler-Ross model, that lists out the five stages of grief.

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

Each of these stages of grief is fluid, there is no set time frame for them to happen. Nor is there any set order they should happen in. You can go back and forth between any and all of them. There is no right or wrong way to grieve a loss. So when I think about grieving my health, does this model apply? Yep.

I can tell you right now I did not start this journey with denial. Oddly enough, when I was first diagnosed with IC, I started with acceptance because I thought I could control my IC. I thought I could have it beat in less than a year, which of course is incredibly unrealistic…which I know now. But because at the time I knew nothing about the reality of IC, all I could do was accept it and try to do the best I could. I am no longer in acceptance. I left acceptance awhile ago. I fluctuate mostly between anger, depression, and bargaining.

And yet I feel guilty for feeling this way. But why? Well, because my whole life has just been flipped upside down. I’ve had to quit my passion, which was working with DeafBlind people. Just imagine the thing you are most passionate about in the world. The thing you dedicated your life to… you found it and you have immersed yourself in it completely. This was my life…and now…it’s not. It truly breaks my heart.

How can I not grieve???

My life…that I so carefully cultivated and grew… that took me years and years to find my path. I was so lost when I was younger. I only knew that I was meant to help people, that I was meant to change lives. When I found DeafBlind work… it was kismet, bashert, meant to be, fate. It was everything I ever wanted a job to be… hands on and working one on one with people who I care about. I dedicated my life’s work to this. And now??? Sure I might be able to do some work with DeafBlind people here and there in the future if/when I am in remission. But I can’t get my hopes up just yet.

“When I think of remission… I think of a soap bubble. It’s not only beautiful and amazing, but it’s fragile and easily destroyed.” -Rachel Bob

And when people who are chronically ill have the hope of remission in the palm of their hands or floating just above them… the hope drives their every behavior and motivation. The thought of remission is what makes me continue the Keto IC diet, even though it is really hard and I just want a sugary delicious cupcake so badly. The thought of remission keeps me going when I have to swallow my pride and use a rolly backpack, a cushion, migraine glasses, etc… Even though I keep the hope of remission, the grief is still there. The grief does not just disappear.

But what we all need to remember is … that’s okay. We are allowed to grieve our losses as long as we need to.

 

Be on the look out tomorrow for a more uplifting post about chronic humor.

 

Women’s March on Washington DC Meets Chronic Illness

I just spent the last three days in DC. And the last day and a half I was holed up in Aaron’s (my boyfriend) apartment unable to leave because of the inauguration. So many roads were blocked off it was nearly impossible to get out. The March on Washington DC (and sister marches being held in other places) is happening now. So this morning I went home.

I left DC when the march happened. Why? I wanted to go to the march…very much so. I had been contemplating going to it for weeks. I talked to friends about it. My friend, Shelby and I made tentative but unrealistic plans to go. Neither of us went. My mom wanted to go too. How amazing it would have been if I could have gone with my mom and stand there with all those women for a purpose? That would have been amazing. But we didn’t go. Why?

Accessibility is a privilege that not everyone always has the benefit of having. Everyone has certain privileges. But today I want to talk about the privilege of being able to march and protest. All you have to do is pull up the live feed to see how many people are there, how much standing you have to do and how cold it is. It also makes me wonder how many bathrooms are around since I have IC and need a bathroom a frequently. I have back, leg and bladder pain which means I need to sit down a lot. And it’s very noisy and loud there which for me is a huge migraine trigger.

Just think about your triggers and what gives you a flare. Is it loud crowded places? Or standing for long periods of time? Is it walking for miles on end? Is it the stress of being in such an emotionally turbulent environment? It can be a plethora of things that set a flare off. We are all different. We don’t have the physical stamina or the ability to go for whatever health reason. But we have this in common…we are unable to go.

And now I sit here in my pajamas with my cat, Stanley, and I wonder…how many women wanted to gimage-selfie-of-rachel-and-stanley-rachel-with-glasses-on-and-hood-up-stanley-looking-slightly-dismayed-that-he-is-being-made-to-take-a-pictureo to the march but were unable to attend because of a chronic illness, disability or other health issues? How many men wanted to go to support the women they love but were unable to go because of chronic illness, disability or other health issues. Isn’t that sad? Chronic illness strikes again.  

Feeling left out is a terrible feeling. I feel left out all the time because of my chronic illness. I have to conserve my energy all the time so I can’t do things. And I’m on a restricted diet so I can’t eat things that my friends eat. Those of us who live our lives with a chronic illness know how frustrating it can be…feeling left out. And feeling left out of the march is no different.

Disability issues…chronic illness issues…these are women’s issues too. Any issue that is important to us…that is a women’s issue

But as it turns out there is a virtual march to make the march more accessible to people with disabilities. We don’t have to be left out or left behind. We have a right to be involved. And the internet is the perfect way for us to do so. Now is the time for us to be loud and make ourselves heard. Now is the time for change because change is coming. Change is inevitable at this moment and we need to stand strong together as a community to make sure we have the changes we want and need. So be active and be involved.

Please don’t forget to be kind to yourself. Rest. Take your meds. Take a nap. Don’t allow the day’s events to stress you out too much.  But I hope that everyone takes time today to watch the live feed on facebook, pull it up their twitter feed or just google it. Participate and get involved.

Afterall….this is history herstory. 

#disabilitymarch #womensmarch #womensmarchonwashington

 

 

 

Inaugural Impact on Chronic Illness

This inauguration impacts everyone. But for those of us with chronic illness, this is not just incredibly stressful but potentially life changing.

With Trump as the new president and Republicans looking to undo everything President Obama has done in the last eight years…there is a lot of havoc to be wrought. Especially in relation to healthcare. The Affordable Care Act (ACA) could be repealed…the decision that it could be repealed was made in the dead of night in a meeting probably held in some deep dark Republican chambers while they were all playing poker and smoking cigars while strippers danced around them…Strippers who likely couldn’t afford health insurance.

If they repeal the ACA, they are destroying people lives. We (chronically ill, sick, everyone who is alive) are essentially being told that we are not worth anything to even receive basic human rights that should be afforded to everyone. The United States is so focused on the bottom line that it can’t pull it’s head out of its’ own ass long enough to think about what it is doing to the people it claims to ‘support’.

It just so happens that through osmosis many of my friends also have one or more chronic illnesses. That is to say that I had these friends before I was in such poor health. If I didn’t have a support system who already have health issues (like Becca, Shelby, and Nai), I’m quite certain I would be much worse off than I am now. Having friends who have special diets and chronic illnesses normalized all of it for me. Not that it makes my struggle any easier because it doesn’t. But it is much harder to adjust to life with chronic illness when everyone around you is seemingly healthy.

But back on point…am I to believe that myself, my friends and the millions of other people who can’t afford health insurance or who couldn’t get it because of pre-existing conditions aren’t valuable in any way? It’s preposterous. That whole pre-existing conditions in health insurance was the bane of the chronically ill person’s existence. When that went away…omgwecangethealthcare! butomgnowwemightloseit…

As it stands, I can’t afford health insurance. I get what I like to call Poor People’s Health Insurance aka Medicaid. This is provided to me through the state of Maryland because I make below  X amount of money every year. So what will happen to this program? I have no idea. I am terrified to find out. I depend heavily on my poor people’s health insurance. Could it be taken away from me??? It’s possible. The future of healthcare is uncertain.

I would like to add that the ACA is not ideal. It has huge flaws that cannot be overlooked. It’s expensive and it requires everyone to have health insurance, which in theory should be a good thing but it penalizes the people who can’t afford it. Impoverished people who can’t afford health insurance have to pay a yearly fine. For 2016, the yearly fine is $695 or 2.5% of your income, whichever is higher. WTF?!?! That is just beyond ridiculous. Although it should be noted that there are exemptions that can be made if you meet specific requirements. However, not all of the exemptions are automatically applied so if you don’t know about them you might get stuck paying the penalty fine anyways.

My point here is that ACA doesn’t work for everybody, that is a fact. There are also the people who can afford it but have large deductibles that ensure they do not get proper treatment until the deductible is met. Treatment is withheld until deductibles are met. Those deductibles could be as high as $7,000+. People are having to choose between treatment and food/home. That’s not exactly what I call ideal.

But do people care? probably not. And not about those who have a chronic illness. For those of us with invisible chronic illnesses, we might as well just be making up some fake disease…like purple lumpy spots or rainbow dragon measles…because often people don’t believe us. They are skeptical of us. You can’t see my migraines or the crippling pain in my bladder…but believe me it is there. I have no reason to lie about it. What if I had cancer? Would you believe me then?? probably. This brings up the issue of mental health for those of us with invisible chronic illness because it really does impact our mental health. Part of my health insurance covers therapy. I could lose that, which is incredibly disheartening to think about.

The stress of this inauguration makes me feel ill and gives me so much pain. That’s why I have been avoiding the news ever since the election. I can’t handle it. I know I am not the only one. I have friends who are in the same boat. If it’s been hard for me to deal with up until now… it’s about to get a lot hard with Trump being the actual President now. I can sit here all day and torture myself and make myself miserable…as I’m sure many others can and will do too.

But we need to be kind to ourselves. We can’t control what will happen. All we can do is try not to stress about it too much… because stress will only exacerbate our health problems and make us feel even worse. I know that’s easier said than done. But let’s just rest and gain strength for when we need it most. <3I found this meme upon a search of inauguration and chronic illness and it resonates so I am sharing it with image description below.

I found this meme upon a search of inauguration and chronic illness and it resonates so I am sharing it with image description below.

image-inauguration-day-might-be-rough
image: posted by nudityandnerdery: Hey Everybody. Inauguration day might be rough. So here’s what I’m asking. You might remember it- Eat something. Stay Hydrated. Take your meds. Love the people around you. Get some rest. Don’t feel like you have to immerse yourself in the entire situation. Don’t be afraid to back off. Stop reading the news for awhile, put on some music you love, eat ice cream or something. Take care of yourself because that’s important.

 

Too school for cool whilst chronically ill on my birthday

Okay, so it’s back to school time for me. I am going into my second semester of graduate school in the Social Work program at Gallaudet University in DC. This should prove to be an interesting semester. I will be taking three classes: Quantitative Research (online), Human Behavior in the Social Environment II and Forensic Social Work ( Forensic SW will be at George Mason University through the consortium of DC schools)

One lame thing is that my first class is on January 18th which is also my 31st birthday. thumbs down…lameeee.

As the weeks of my winter break have steadily crept by, I have rested as much as I was able to. Although during the holidays rest was not really an option. So I have tried my best to get rest since the new year. Going to physical therapy wasn’t exactly restful either. But as I sit here printing out my 30-40 page syllabi, I have realized that I am really not ready to go back to school. Graduate classes are challenging and I just have this flash in my mind of what my first semester was like…how completely overwhelming it was. And I am a good student. I love school. I have always loved school.

When I was a kid, if I got sick I would fake being well so I could go to school instead of having to stay home sick. I was that kid. Not like most people knew kids like that. But that was me. So that should give you an idea of what kind of nerd you’re dealing with here. #tooschoolforcool #nerdyandproud 

 

image-picture-of-rachel-as-a-child-approx-age-7-wearing-a-tshirt-with-ily-hand-on-it-and-smiling-big-with-no-front-teeth
Image: Rachel, age 7, smiling and laughing. Missing two front teeth and wearing a shirt with the Sign Language I love you hand on it.

My first semester of grad school, while my health was degrading fast..my pain levels were off the charts… migraine for over a month, pelvic floor muscles tightened up so I couldn’t pee and so much more pain. I had to stop working and volunteering but I still managed to get a 3.9 GPA. I am still a smidge bitter that it’s not a 4.0, but I know it’s because of my health.

All of that aside… I am really just worried how the semester will play out with my health. It should be considerably easier now that I don’t have a job. I am in the process of applying for SSDI (disability) so that I might have some form of income. Which does not thrill me but I should probably have money coming in sometimes. I also worry about my new Keto IC diet, how easy/hard will it be to keep up withimage-purple-lunch-box-with-large-teal-polka-dots after I begin going to classes.  Granted, I have one online class, one at Gallaudet’s campus and one at George Mason’s campus so I won’t be on campus too much. And so I just bought a cute new lunch box to help motivate me to make my lunch and snacks.  With such a restricted diet, it is very important for me to have food with me at all times in case I get hungry and need to eat. Nothing like teal polka dots to motivate me to make my lunch daily.

 

People with chronic illness often need to think about food. They often have restricted diets, elimination diets, food allergies and more. There’s always something we can’t eat. With my IC diet, I have a list a mile long of stuff I shouldn’t eat. This list which is published by the Interstitial Cystitis Association (ICA) breaks it down into three categories: Bladder friendly, Try it and Caution. It’s a comprehensive list that every IC warrior should take into consideration when changing their diet. And now with Keto added on, I am even more restricted, but that’s okay. It’s a challenge that will be worth it for my health. hopefully.

There is even a migraine diet. A lot of the triggers for migraines are the same triggers for IC. I suspect these triggers are common for many chronic illnesses. Because they are foods that aren’t necessarily nourishing to our bodies.

For a chronically ill person to truly heal…we need to nourish our mind and body. 

Truly going back to school is exciting. I have always loved it. I love buying school supplies. Highlighters, pens, journals and so on. But this time around just feels different. I am worried about my health. I am mourning the loss of my jobs and volunteer work. I am mourning my food losses too. And the fact that the first day of my semester starts on my 31st birthday… doesn’t help. *grumble grumble*

Being chronically ill during celebratory times is difficult. Heck… being chronically ill during non-celebratory times is hard. But when there’s holidays, anniversaries, birthdays… it makes us feel even worse. Because often times we are not up to participating because we are in pain or don’t feel good. Maybe we have difficulty walking, like myself. My ability to walk more than 5 minutes has been compromised and I need to build up my stamina and tolerance.  Nothing makes you feel worse than knowing you should be celebrating something, like my birthday or our recent one year anniversary, but not having the ability to really do anything to celebrate. That’s a hugely terrible feeling. It’s easy for us to fall into a chronically ill state of mind where we think that it’s just easier for us to do nothing and celebrate nothing because what’s the point? The people around us might not know what to do for us and maybe unsure if they should do anything for us at all.

Don’t do nothing. I will repeat: Don’t do nothing! 

Doing nothing is a slap in the face to your chronically ill loved one. Maybe your chronically ill loved one said they want a low key celebration. Okay, that’s fine. What’s their favorite food and dessert? Just have a small intimate dinner with the two of you or the family. Buy them a card. Get them a gift certificate or a gift you know they will love.  Google gifts for chronically ill people. You would be surprised at the amazing gift ideas that come up. There’s something for everyone. Everyone… and I mean everyone… no matter what kind of pain they are in or what kind of illness they have, deserves to have some celebratory moments now and then. We need them to survive the pain of the every day.

I want to have an amazing birthday because… I am alive and I’m only 31 years old.

But I will make the most of it. I celebrated my birthday with Becca yesterday. And there will be further celebrations this week. I will keep my spirits high and hope that this semester will be better than the last. I have high healing hopes. 

 

image-happy-birthday-to-me
Happy Birthday to me

 

 

 

 

Keto IC diet: Week 1

***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***

I kicked off the first day with a keto IC smoothie, which was easy enough to do because I love making green smoothies anyways. This one just had to be a bit different because it was Keto, so it wasn’t perfect but I’ll work on it. I have found it really difficult to eat enough food throughout the day because with keto I have to eat drastically more food than I am used to eating.

1550 calories. Although I am not counting calories, this is just to show how much food I need to eat. And this is the breakdown of what I need to eat throughout the day.

78g of protein.

19 carbs.

129g of fat

But the whole changeover is a process.

My whole body has been feeling acidic though out the week though. I have tried my go to regular alkaline helpers: Prelief (a dietary supplement to reduce acidity for heartburn and IC), tums and water. Those didn’t help like they usually. So I went and tried an IC tried and true method, of baking soda mixed in water. Which is incredibly disgusting but iimage- bottle of prelief. for heart burn or bladder symptoms caused by foods.jpgs very alkaline and can generally help the body calm down when acidic. And it has actually been helping, so that’s good. IC warriors often take baking soda baths, as well for similar relief for burning during urination.

Keeping to the new diet has been surprisingly easier than I originally thought it would be. It helps that I have such an amazing support system. Becca, Christine, Shelby, and Aaron have all been critical in helping me be able to keep up with this diet. Becca has been amazing, she took me grocery shopping last week and then today as an early birthday gift, she gave me some Keto IC friendly foods, which I am so grateful for. If I didn’t have a strong support system I would definitely fail. It’s hard starting such a diet around this time. My birthday is coming up and because… cake and ice cream and other yummy foods that I love on my birthday. Like spaghetti and meatballs or lasagna. But today Becca made me an amazing birthday lunch of NOodles (no-oodles) with kale, zucchini,  shrimp, cream, butter, olive oil and parmesan cheese. And then dessert was a delicious vanilla cream cheese frosting fat bomb.

 

Image- bag of NO-oodle. All Natural. No net calories, no fat, no carbs, no soy, no gluten, no preservatives.jpg
image: Bag of NO-oodles. All Natural. No Net Carbs. No Fat. No Net Carbs. No Gluten. No Preservatives. The Healthy Alternative to Pasta

 

 

image-wine-glass-filled-with-white-vanilla-cream-cheese-frosting-fat-bomb-with-5-blueberries-on-top
image: wine glass filled with white vanilla cream cheese frosting fat bomb with 5 blueberries on top

Almost every day this week I have been with Aaron and he has been making sure I eat enough. Which honestly, sometimes drives me insane because I’m not hungry. I’m never as hungry as he wants me to be. But I appreciate that he keeps trying. There was one day when I was craving sugar so badly, I think it was my third or fourth day in. I was like OMG NEEDSUGARCARBSS NOM NOM NOM!!! FEEDFACEE. He made me a vanilla fat bomb, which was delicious. And then he went out and found me some low carb high protein vanilla ice cream, a brand called Halo Top. And let me tell you, it is actually really good. If they wanted to pay me to write reviews for them…I would. But they don’t have to and I will still say it was really good. Their website lists all their flavors and all the ingredients. The only thing is…it can be hard to find. So on the website which I linked above, they have a where to buy feature so you can figure out where to buy it near you.

 

image-pint-of-halo-top-vanilla-bean-ice-cream-240-calories-per-pint
Image: Pint of Halo Top ice cream Vanilla Bean 240 calories per pint. Good source of protein

Doing such a strict diet like Keto or the IC diet is hard enough. Granted the IC diet, is not like keto at all. The IC diet is specifically for people with IC, to cut out acidic foods that irritate and hurt the bladder. Whereas Keto is a much more stringent diet that is used for weight loss, other health issues (such as seizures) and general health. Combining the two diets is sort of like mixing oil and water. They don’t really go together. A lot of the stuff that people usually eat when on the Keto diet, I can’t eat because of IC. When doing Keto you need to eat a lot of sodium, a common food for that is pickles. But as per my IC diet, I don’t eat pickles. So my support system and I have had to brainstorm other salty creative ways for me to get more sodium into my diet.

The truth is that adding Keto to my already restricted IC diet is incredibly emotionally difficult for me. I am doing this because of my health. I am not doing this to lose weight. The majority of people of people who do Keto are doing it to lose weight. This whole process is emotionally, mentally and physically upsetting for me.  My world is being turned upside down… yet again… because of my health.

And I just keep sacrificing. That’s what those of us who have one or more chronic illnesses do. We sacrifice. The stuff that we sacrifice is limitless. And it tends to be stuff that most people don’t even think about. It always starts small and slowly gets bigger… food, more food, even more food, exercising, makeup, brushing hair, showers, clothes, more food, working, walking, sleeping, going out, even more food, friendships. This list goes on and on. And you can see how it started so simply with food.

I believe we do all of this because we do what we have to do to survive. 

 

I really do look forward to seeing what benefits will come of doing the Keto IC diet for my IC and migraines. I can only hope they will happen sooner rather than later.

image-%22it-is-not-the-strongest-of-the-species-that-survive-nor-the-most-intelligent-but-the-one-most-responsive-to-change%22-charles-darwin
“It is not the strongest of the species that survive, nor the most intelligent, but the one most responsive to change.” – Charles Darwin