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.

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[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.

 

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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/ 

 

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

 

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]