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

 

 

 

 

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Keto IC diet: Week 1

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

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

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

78g of protein.

19 carbs.

129g of fat

But the whole changeover is a process.

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

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

 

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

 

 

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

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

 

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

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

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

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

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

 

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

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

 

 

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.

 

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

 

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. 

 

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[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]

 

 

Taking back my life.

 

[Image description: If you change nothing, nothing will change]

To start I had physical therapy this morning with Dr. Jen. After the last session before the holidays which left me crippled and barely able to walk and flared up in pain beyond belief for almost two weeks, I was actually starting to feel a little bit of an improvement. Well…that’s the point of PT right? Just the last couple of days I have noticed less straining to pee. 

So today when I saw Dr. Jen, I told her what happened. And she said maybe we should take it easy. But I told her I’d rather push a bit harder now because I still have off of school for two weeks and I want to see more improvement by then. So we pushed and she said I handled a lot more pain today, much better than last time. Although she was doing some manual trigger points internally and at one point she pressed a muscle and it hurt so badly, I almost threw up. Wow, it was just so intensely painful.

On a less painful note, I recently got a book called The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life. Written by Patricia A. Fennell, MSW, LCSW-R. 

Fennell discusses the four phases of a chronic illness (pg 37-38). It reminds me of the phases of grief in a way (Denial, Anger, Bargaining, Depression, and Acceptance) Although outside of these phases there is a huge grief cycle that people with chronic illnesses go through. And I am no different. Here are the phases that Fennell describes:


Phase one: Crisis 

This phase is characterized by crisis and chaos. And seeking relief of pain and hurt. 

Task: you and your support system are to deal with the immediate hurts or traumas of your new illness


Phase two: Stabilization

This is a plateau of symptoms and they become more familiar. You start to think that maybe you’re getting a little better but still continue to experience chaos. You keep trying to behave as you did before you got sick and this attempt frequently leads to relapses. These are very upsetting and feel like a personal failure.  

Task: Begin to stabilize and restructure your life patterns and perceptions

Phase three: Resolution

By this point, you have learned how your illness behaves and how the world responds to it. You’ve also finally learned that you can’t be the person that you used to be before you got ill. This can be a devastating perception. 

Task: Develop a new, authentic self and to begin to locate a personally meaningful philosophy to live by. 

Phase four: Integration

You are now able to integrate part of your old self from before the illness with the person you are now. 

Task: Continue to find ways to express your new “personal best” to reintegrate or form new supportive networks of family and friends. In total integration, you arrive at a new, whole, complete life, of which illness is only one part, even if it is an important part. 


I think I am somewhere between phases two and three. I’m just starting to realize that I can’t behave the same way I did before IC. I am in the process of learning that I can’t be the person that I used to be before IC.  I don’t think that the phases are static, they seem fluid and it would be easy to take one step forward and then two steps back.

Working with DeafBlind people was my entire reason for being. It was my passion, my motivation and my goal for years. I worked for two different organizations part-time as a freelance Support Service Provider with DeafBlind clients. And I volunteered on the Board of a DeafBlind organization for 3 years called Metro Washington Association of the DeafBlind (MWADB). These jobs were everything to me. I went to Gallaudet University (the only Deaf liberal arts university in the world) and got my BA in Deaf Studies with a focus on DeafBlind. I always said the Deaf Community is my home but the DeafBlind Community is my passion. And it gave me drive. But that changed. My health changed that. I am now in grad school to be a social worker, and I am hoping to specialize in working with DeafBlind people. But the issue is that working with DeafBlind people is all-encompassing. Even though there are such a variety of communication methods, working with DeafBlind people is a give it all kind of job. It’s mentally, emotionally and physically exhausting and that was one reason I always found it so rewarding. However, my body and my health disagree. My body can no longer handle to constant tactile signing or guiding people. My body can no longer handle how mentally exhausting it is to describe the environment to the best of my ability. 

When I could no longer give 110%, I knew I could no longer do these jobs. I had to resign…this just happened in the last week. And it has shattered my heart into thousands of pieces. I have met such amazing people in the DeafBlind community. And of course, I will still talk to them. But I was planning the long game in the DeafBlind community. That was my entire future. And now I am unsure if that is a reasonable goal. I have to take care of myself first. #selfcare

So yes…I am trying to take care of myself. I promise. I am solely focusing on grad school when this next semester starts. 

 

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[image description: A picture of a cartoon bunny saying “Your health and happiness come first. Never feel guilty for taking care of yourself.”]