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.

 

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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.

 

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 

 

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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

 

 

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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

 

 

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.

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

Why I am struggling to recognize myself

 

[Image description: a warped picture of Rachel Bob’s face]

I am at a place in my life where I am really struggling to recognize myself. I am giving up things that I love left and right because of my chronic illnesses. And it feels like I am losing myself, my identity. The fact is that chronic illness is more than just physical ailments, although there is plenty of that.

There’s a book, which can be found on Amazon, called Good Days, Bad Days: The Self and Chronic Illness in Time by Dr. Kathy Charamaz. She explains that there’s a very narrow view of suffering that tends to be defined as physical symptoms which only ignores or minimizes the broader significance of suffering. She says:

The loss of self in chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally new ones.

Dr. Charmaz also explains that all of the experiences and meanings upon which the chronically ill person had built former positive self-images are no longer available.

So in my situation, I have spent years building a foundation, reputation, and life working with, advocating for and being a part of the DeafBlind community. But now that my health has progressed to the point where I can no longer do that I feel lost. The identity I built and cultivated within the DeafBlind community was/is a huge part of who I am because it is difficult to talk about myself without talking about my passion for working with the DeafBlind community. Being that most of what I did was directly related; my jobs, my volunteer work, my BA focus and my MSW focus. That carefully cultivated life I watched grow and bloom around me… has come crashing down and now I have no idea what’s left.

It’s not to say that I can’t be me without the DeafBlind community. I can and I will get through this. And yes I have other interests that I can and will pursue. But my goal and passion have been this for so long that to no longer have that be my goal feels wrong. It’s a betrayal to myself and to the community of people who I love.

My loss of self-started about one and half years into my diagnosis of IC but Dr. Charmaz says loss of self can start even earlier – sometimes even before a diagnosis is made and it will continue to grow from there.

Pre-diagnosis: Doctors can easily discredit our definitions of self when we are seeking help for early symptoms. Without a diagnosis, sometimes doctors view patients with undiagnosed illness as neurotics whose symptoms are either nonexistent or psychosomatic,

Beginning of illness: At first, family and friends demonstrate interest, attentiveness, and assistance, but as time goes on involvement tends to dwindle.

-Worry about burdening others:  Especially your significant other.

-Unpredictability: Having a chronic illness is unpredictable. There are good days and bad days. This can disrupt their lives far beyond physical pain, to the point of quitting work, limiting socialization or even avoiding activity.

-Limitation of life: People with chronic illness might be forced into limiting normal activities to protect their health. This can have a big impact on self-image.

-All Consuming focus: Chronic illness can overtake one’s identity. Illness becomes the focus of one’s life as treatment, living with constant discomfort, medical appointments, and issues with daily activities take over.

What it comes down to is that if you have a chronic illness and you have to give things up that you love… you are not alone. I am right there with you. Thousands upon thousands of other people are standing right there next to you. And we need to recognize this so that when we feel lost we can say that and not feel like we are morons just because we lost our identity. We are more than just one identity… but the feeling of not recognizing yourself is valid.

While reading through information in preparation for this blog I came across an article in Social Work Today called Grieving Chronic Illness and Injury – Infinite Losses. Which is relevant for two reasons, 1) I have chronic illness 2) I’m in grad school to be a social worker. But I think it should resonate with many people because it really hits the points that I’m emphasizing in this post that grieving through chronic illness is okay. It is something that people (i.e. Social workers) are trained to help you cope with.

Isn’t it kind of a relief to know that if social workers are being trained that means it must be somewhat normal? well…somewhat. Either way, the grief might never end. It might just continue on but the best thing that I can do (and you can do) is continue on and try to find the most meaningful life you can live.

 

How I told my boyfriend about my IC

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Image- Rachel and Aaron taking a selfie cheeks pressed together smiling in NYC

 

The first time I told Aaron that I had Interstitial Cystitis (IC) was on our second date. We were at the Silver Diner and I was so nervous to tell him. I had been single for a year when I met him. I had been busy focusing on myself and trying to take care of my health while working, volunteering and finishing up my BA. Before I met him, I was also certain that I was going to be a spinster. A fact that I loved and still love to talk about, especially because I have so many cats. 

But I knew I had to tell him about my IC. So finally I just told him. I have a bladder disease called Interstitial cystitis. He listened while I explained it. I was still so nervous. What if he turned and ran. Or just never talked to me again. This is a chronically ill person’s fear, that they are undateable or undesirable. He listened and asked a few questions.

However, it should be noted that he was/is on a ‘special’ diet of his own, the ketogenic diet to lose weight. So his diet was/is limited as well but in a different way than mine. In the end, it’s different because I have a disease and he is perfectly healthy. But I think the fact that his diet is limited made it easier for him to accept my food limitations. As someone who was already used to cooking his own meals and trying to customize things when he went out to eat.

On our third date, he invited me over to his place where he made me IC friendly pizza from scratch. Because I told him how much I love pizza and that it’s hard for me to eat pizza often because I can’t just order pizza.. it has to be made. So he made it from scratch and it was amazing. He even downloaded the IC app on his phone to make sure he knows all the bladder friendly and cautionary foods at all times.

During the beginning of our relationship, I said something along the lines of him having to deal with this burden of mine. He said something that I will never forget, I don’t look at it that way, I look at it as simply accommodating your needs. That’s the kind of thing people with a chronic illness need to hear and of course, people who say it need to mean it. 

We have been together a year now, and if we are out driving, the second I tell him I need a bathroom he finds one. No questions asked. He knows I have IC and he will never question if I can hold it because I can’t. When we go places, if people offer me food, often before I can even say anything, he will ask them what’s in it He is very conscientious of the food he makes for me and the food he allows other people to give me. 

Oy! Was I the lucky girl to find this goy* straight away who takes care of me when I’m sick, hurting and in pain.

*goy – a yiddish word meaning non-Jew. 

 

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Image- Aaron and Rachel taking a selfie making silly faces with tongues sticking out in front of Spring Awakening poster in NYC

 

Food as medicine

 

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

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


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

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

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

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

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

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

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

 

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

 

 

Having a support system

 

[Image description: from left to right: Becca, Rachel, Aaron and Shelby standing next to each other and smiling]
A strong support system is crucial for people with chronic illness to survive and thrive. A support system can include family, friends, support group, doctors, other medical or holistic professionals. My support system is coming together nicely. 

 

The players:

Rachel – The One with IC and more

Debbie – The Mother

Aaron – The Boyfriend

Becca – The Thoughtful One

Shelby – The Cautious Optimist

Christine – The No Funny Business-er

Blinken – The Fluffy Cat

Stanley – The Ninja Cat

Marzipan – The Biggest Little Baby Cat

Ziggy – The Not-So-Nice Cat

Now that we have met the players and their roles. It’s important to understand how all of them will work on a macro and micro level. I know my relationship with each of these people as individuals so on a micro level it’s easy. But on a macro level, the system as a whole should work together fluidly. 

It’s important to find people who you trust, will be there to support you, have your best interest in mind and can be part of a team effort. This can be a difficult task to find a group of people. And for me, as an introvert, I don’t love the idea of having a group of people discussing my well being. But I need a solid plan and a strong support system. Each person

Each person in the support system plays their own role. One or two of them might be better at emotional support. While one might be better at providing support through actions, like someone who comes to see you once a week and cooks you dinner. They are showing you they care about you by being there for you regularly, even if they might not be the best with emotional support. And that’s okay if you have a strong enough support system then it’s good to have a variety of people who can provide different kinds of support. 

I will be planning a huge lifestyle diet change coming up within the next week or so. On Saturday, January 7th, my support system will have a round table discussion of what my diet will look like so that we are all on the same page. So I can go hang out with Becca and she already knows that I can’t eat tomatoes because of my IC and there’s a good chance I’ll cut out sugar and processed foods and so on. Everyone who is in my life already knowing will make it easier for me to follow through and be held accountable for my actions. 

 

Image result for creating a support system quotes
[Image description: Real friends support you no matter what. If you want to be a tuna fish then it’s my job to encourage you to be the best damn tuna fish that you can be.]

 

New year… New you??

 

[Image description: People treat New Year’s like some sort of life-changing event. If your life sucked last year, it’s probably going to still suck tomorrow.]
It’s a new year already. 2017. Wow. How does that even happen? The whole year flew by. 

 

Almost two years ago this March I was diagnosed with IC. 

One year ago this past December I met my boyfriend, Aaron. And on January 14th will be our one year anniversary, which is crazy because it definitely feels like 6 years. 

I am almost 31 years old; on January 18th. This is not where I expected to be at this point in my life. I’m not exactly sure where I expected to be. But I promise you it did not involve me starting a blog chronicling my journey with chronic illness. But here I am. I have given up so much in the last few months to be right here in this exact moment.  These chronic illnesses have kicked me until I was down and then pounced on me some more. I’d just like to take a moment and image what that would look like. I’m picturing a little brain (representing migraines) and a little bladder just jumping up and down on top of me. 

Anyways…back to the point, I never thought this would be me. Being forced to give up the goal and passion of mine that I have been working towards for years because of my health. It is heart-wrenching. Whenever I think about it I can’t help but cry. I will get into this more later…it’s still a very raw topic for me.

The only positive is that I am still in graduate school for Social Work and I have decided I want to add public health as a specialty so that I can work with and advocate for people who have chronic illnesses. 

 

new year? more like same shit, different year
[Image description: A Cartoon image of Batman looking like he is thinking and words overlaid that says New year…? More like..Same shit, different year]

On coming out

 

[Image description: Close up of an ornate key in an lock with the door cracked open]

I was diagnosed with IC in March 2015, so almost 2 years ago. And I always thought it would just be easier to not tell people. The less people that knew the better. If people knew, it would just make things more complicated. It would create more questions. People might question me. They might question if I am actually in pain or if I actually have this disease/condition/illness/whatever. There’s the dreaded, “But you don’t look sick”. That every chronically ill person loathes.

And what if they looked at me differently after I told them? What if it makes me appear weak? Or like I can’t handle the stress of whatever comes my way?

I didn’t want to have to explain it. Maybe I was embarrassed too. Who wants to talk about their bladder and lady parts or [insert body part here] with their family? Or friends? or strangers? or whoever? It’s personal. It’s uncomfortable.

But guess what? That’s my life. My life revolves around my bladder now. I have slowly started coming out and telling more people. It started last year… one year ago during Chanukah when I was kind of forced into telling my Aunt Ro. And I am so glad I did. It is one of the best things that has happened to me since I was diagnosed. And one day I hope she reads this and knows that I feel so fortunate having her support me through this. She works at a urologist’s office, so she knows what goes on with people who have IC. When she found out I have IC she started checking in on me. Which might seem like nothing to some people, but to someone with a chronic illness… it means a lot.

People who have chronic illness often feel isolated and alone. I am no different. I have a wonderful support system. My amazing boyfriend, Aaron, who is there for me every day. My friends Becca, Shelby, Christine, and Nai. And, of course, my mom. And a few other people. I am so lucky to be supported and loved. But I still feel alone in my pain. Because as much as these people love and support me, they can’t feel my pain and they can’t understand what I am going through. I joined a support group online early on. And I have become very active in the group recently. There is comfort in knowing that I am not alone.

But back to my point. Over the last year, I have started telling more people. I told 2 out of 3 of my teachers this past semester. And I will tell all my teachers this upcoming semester. I’ve told a couple of my cousins about it. And last night at my family Chanukah party I told my Great Aunt and my Uncle. It feels like a huge weight is being lifted off of me every time I tell someone. Yea…it’s uncomfortable. But that’s my life. That is life. Why should I struggle through this alone when I have people who care about me who are willing to help me carry the load?

And like many chronically ill people, I do worry that they will get tired of me and start thinking of me as a burden. That is a frequent worry of mine. But I have to trust that these people love and support me and will always do so.

Coming out to friends and family as chronically ill is never easy. I waited until I was ready to tell people and that’s okay. If I never told anyone…that would be okay too. But feeling less burdened because other people know what I am going through and can help me through it… that’s a good feeling too.

 

Coming out as anything is never easy, and in the case of people with invisible chronic illness,.png
[Image description: coming out as anything is never easy. and in the case of people with invisible chronic illness, there comes a time when if you don’t tell people it starts to negatively impact your health]