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. 

a-good-laugh-heals-a-lot-of-hurts-madeleine-lengle
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.

 

 

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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.

 

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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

 

 

You’re pretty (sick)

Beauty is in the eye of the beholder. Can the same be said for health?

I think the average American would look at health and say either you are sick or you are not. And then they would look at someone like me (and this has happened before) and would tell me “you are too pretty to be sick/have a chronic illness”. But what is health? What is attractiveness? And is it all subjective?

Before my chronic illnesses degraded my health, I used to enjoy looking nice. I wore makeup, brushed my hair and wore nice clothes. But now that I have been in mass amounts of debilitating pain for months and months, I haven’t touched makeup in that long. My hair often goes unbrushed as I am just too exhausted or brain fogged to remember. And now my main method of choosing clothes is by comfort level. I can’t wear jeans or any kind of restricted waistband right now because it puts too much pressure on my bladder and pelvic floor. Now I stick to leggings (well sweater leggings for the winter) and sweatpants. Along with slip-on boots which I often need help putting on because I struggle to lift my leg up high enough to put my foot in. Fortunately, my boyfriend Aaron, helps me put my boots on whenever he is around.

But here is what I’m saying … I don’t feel attractive. I don’t feel pretty. I don’t feel like myself. See picture below of me looking beyond exhausted wearing my migraine hat, which is an ice pack wrap made especially for migraineurs. I have two of them, one that I keep at my home and one that I keep at Aaron’s home.  And as silly as this migraine hat might look, it really helps my migraines. Would I wear it out in public?  I haven’t yet, but I would ..yes.

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[Image description: a selfie of Rachel not smiling looking extremely tired wearing her migraine hat]
Isn’t that the thing about being chronically ill? You have to really make a lot of sacrifices and that includes sacrificing how you look. So now I no longer wear makeup or nice clothes…I have to wear migraine glasses in public which are okay but not exactly the fashion statement I want to be making. I get a lot of comments on them. But the fact is …they help reduce my migraines a lot and that is all that matters. Do I like the way I look in them? Not really.

image-selfie-of-rachel-with-red-hair-down-and-black-glasses-with-a-pink-tint-on-migraine-glasses
[image description: a selfie of Rachel with long red hair down and a focus on black rimmed glasses with pink lenses. migraine glasses]
If a chronically ill person goes out with people and passes for normal because they dress nicely and/or put makeup on…it’s very likely they will be accused of faking having a chronic illness if other people know about it. There is very much a prescribed notion of what sickness looks like. But I want to tell you that sickness isn’t always easy to see. I can easily hide my chronically ill-rundown-exhausted-look with some makeup and a bit of hair brushing. Okay, so even without makeup, I still don’t technically look sick.

But even still, How can I look attractive when I don’t feel attractive? I don’t feel desirable or wanted. This is not a new phenomenon or specific to me. There are blogs and articles dedicated to this issue, like How to feel sexy when you are in pain?

Just this morning I was in so much pain from physical therapy yesterday that I could barely move, let alone walk. I needed a shower so Aaron helped me. I couldn’t even lift my leg over the bathtub to get in, he had to help me with that and the whole time my legs were shaking. And still, he says I look beautiful and I’m like…yea not really. How can I possibly look beautiful when I am in this much pain? It makes no sense. But he says he knew what he was getting into since I told him very early on about my IC. I can only hope he knows what he is talking about.

When it comes to looks and chronic illness, another huge issue that tends to pop up often is weight. Because of my chronic illnesses, I have difficulty keeping weight on but overall it fluctuates depending on if  I’m in a flare. When I am flaring up really badly, I eat less and therefore lose weight…which is quite noticeable to those around me. People will say things like “Wow! you look so thin!” like it’s a compliment??? But I’m only this thin because I am in so much pain and couldn’t eat like I usually do. It’s this big vicious cycle.

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[image description: a selfie of Rachel wearing a Gallaudet sweatshirt with no makeup, hair up, looking exhausted]
 So do I feel pretty? no.

Do I feel pretty sick? You bet you sweet effing bottom I do.

 

Why self-care is my resolution for the new year

 

[Image description: It is not selfish to refill your own cup, so that you can pour into others. It’s not just a luxury. It is essential.]

There is a trend going around the world wide interwebs of selecting a word to represent your new year resolution. I like it. It’s simple and poignant.

That being said, the word I have chosen is: self-care

self-care

Part of my self-care for the year was starting this blog. This blog is a therapeutic outlet for me to express myself. How else will I engage in self-care?

  • Take time for myself
  • Ask for my needs to be met
  • Rest
  • Play
  • Eat well/ eat to match my needs
  • Enjoy and love my cats (Blinken, Stanley, Marzipan, and Ziggy)
  • Accept help from others
  • Meditate
  • Walk (when possible and I’m not hurting too much)
  • Take a bath with Epsom salt
  • Read a book
  • Get enough sleep

Self-care is important to me as a chronically ill person because I did not get to this point by caring for myself. I do believe that chronic illness impacts people who don’t take care of themselves. Chronic illness forces us to slow down and focus on self-care…which is both beautiful and unfair at the same time.

Having IC and migraines really forces me to take care of myself to an extent. But I can easily half-ass it which is why my health degraded so badly in recent months. I can no longer allow myself to continue on this path of self-harm. Not when I know it just truly hurts me further; it exacerbates my IC and my migraines. I can no longer tolerate it. Nobody should have to tolerate their health going downhill when it can be taken care of by self-care.

People who have chronic illnesses must take care of themselves. There are no if’s, and’s, or but’s about it. Chronic illnesses are energy-depleting and life-consuming. Self-care helps us renew our energy and heal our bodies. When we give our bodies time to heal it gives us that extra bit of energy to do the things we want to do in our lives. For me, that is going to grad school, doing school work, seeing friends and co-parenting with my boyfriend. All of these things are really important to me, but when I don’t take care of myself first I take away my ability to do the things I want to do in my life.

Is self-care selfish?

Unfortunately, our society frowns upon self-care. Our culture is all about beauty, fashion and needing more stuff but just mention needing some time to yourself for self-care and people act like you are being selfish and greedy. In a way beauty is a form of self-care, isn’t it? For the people who go to spas or do at home face masks, manicures and so on. All of that is a form of self-care. But I guess because it has a different intention behind it… it means something different. The intention being that I need to look my best because that is what society expects from me at all times. But if I do spa treatments, not to look good, but to take care of myself… that’s selfish. That seems quite backward.

I don’t have time to spend hours and hours focusing on my beauty routine. The best I can do is spend some time focusing on my self-care routine and hope it will help my chronic illnesses. I will not make excuses for needing self-care. Everyone needs some self-care at some point in their lives. That’s not selfish… that’s life.

When we are on an airplane and they tell us what to do in case of an emergency, whose oxygen mask do we put on first? Ours or our children? Ours. Why? Because if we go to put our children’s on first we could pass out from lack of oxygen, putting both ourselves and our children at risk. This might be an extreme example, but this is what self-care is. We take care of ourselves first so that we can better take care of others.

How will I incorporate this one word throughout my entire year?

This one word is not just a word anymore… it’s an important theme in my life. I will make it a tangible thing that is so important to me that I can’t live without it. I have written it in my day planner. Yes, I have a paper day planner…I am a grad student, we need to write stuff down…plus I’m old-fashioned. I wrote self-care on every page of my day planner to remind myself what I should be doing every day no matter what is happening. I have goals set…like create a blog, take care of myself, and all the stuff listed above. I am holding myself accountable by having people in my life know that I am supposed to be actively self-caring.

image-bluegreen-heart-with-hand-written-text-self-care-is-an-act-of-self-love

What’s your word? How will you incorporate it in your year?

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. 

A letter to my IC

 

[Image description: a calligraphy pen laying on top of a piece of paper with beautifully written wording on top.]

Dear Interstitial Cystitis, 

You have changed my life in so many ways; both good and bad. I hate to admit that you have done anything good for me. Although, I can’t think of anything off the top of my head at this exact moment.

But you changed my life and that is an undeniable truth. The agony and suffering you put me through is just unbelievable. I miss being able to just go to the bathroom and pee like a normal person. Instead, I have to continually tolerate what can only be described as white-hot burning razor blades mixed with shards of broken glass and laced with acid and/or the complete inability to pee altogether because my pelvic floor muscles are so tense that they are unable to release. 

I miss my life. I hate giving up doing the things I love to do. I hate trying to make plans and then thinking I might not be able to follow through because I will be in too much pain. I hate that even on a good day… I’m still in pain. 

So here we are. If this were a game, you would definitely be winning right now. You will not always have the upper hand, there will come a day when I come back at you swinging. But for right now I will bide my time and hope that I can take you down holistically.

Ungratefully yours,

Rachel Bob

This is a personal prompt: Write a letter to your illness or condition, from The Mighty, which is an online community for the disabled and chronically ill. https://www.themighty.com/