A Life without Birth Control: What’s that like?

Image- Hormones, why you gotta do me like that?
Image- Hormones, why you gotta do me like that?

I have been flying under the radar the past couple weeks. I’ve just been feeling very uninspired to write. It’s not that I have had nothing to say…I have plenty to say. I guess it was more that I was feeling very overwhelmed and emotional. I’ve noticed that since I stopped taking birth control February 25th, I have just been a hot mess…more than usual.

Some people have asked me why the hell would you stop taking birth control?! Take a chill pill ya’ll. I’m not trying to get pregnant….you know I don’t want kids. I have my reasons.

This was not an uninformed random decision. I was on birth control for 16 years, from the age of 15. I had the worst periods ever. Every month I would miss a full week of school…sounds awesome right?!?! Wrong!  I would have a fever, vomiting, debilitating cramps so bad that I could barely walk and heavy bleeding for seven days exactly. And then, my doctor put me on birth control to help that and it helped so much. My periods became more manageable and less painful.

And for the last five years, I have been taking continuous birth control…meaning no periods. I had a sweet blissful no period life. It was amazing. I never missed them. Not once. Never. I do have the mindset that…why should I be punished for not being pregnant? I am not one of those people who likes getting a period to know I’m not pregnant…I’d rather skip it and just be happy without it. Like I have been for the last five years.

I love birth control…it’s my friend. I miss it a lot. I thought about stopping it for months before I went through with it. Because I started feeling concerned about how it might be impacting my health… I had been hearing a lot of stories about women with chronic illnesses having issues that seemed to be exacerbated by birth control. So it was on my brain.

I have to take care of myself. That’s my resolution…self-care. Even if that means stopping birth control for now, for awhile or for always… I have to do what is best for my health. period. (ha…punny)

Image- Jokes about menstrual cycles are not funny. Period.
Image- Jokes about menstrual cycles are not funny. Period.

A month ago, I went to see my gynecologist for my annual (something all of us who have a uterus just love), and I discussed it with her because I was on the fence about it. But then another reason I should stop it came to light. Somehow we started talking about my migraines. She asked if I have visual auras…why yes, yes I do. She said okay well then you have to stop taking it. Apparently, if you take the estrogen pill and have migraines with visual auras, there is an increased risk of stroke. I didn’t always have visual auras. I have had migraines since I was 18, so for 13 years, but the auras started just a couple years ago. My gyno said there’s your decision.

I threw out all my pills and have been birth control free since then.

My gyno did tell me that if in a couple months I decide getting off birth control didn’t help and I want to get back on then she will prescribe me a progesterone pill instead of the estrogen because of the migraine/stroke situation.

My friend, Shelby, told me about Evening Primrose Oil– which is a supplement that can help balance hormones and ease symptoms of PMS and menopause, among other things. So I started taking that in hopes that it might help. But being the sensitive gal that I am, I prefer to start at a low dose and work my way up. I started at one 500mg capsule daily and slowly I have worked my way up to one 500mg capsule three times a day.

And I surprisingly got my period almost exactly one month after I stopped the pill. This surprised me because I don’t think of my body as healthy enough to have a period. But just because I have one now does not mean I will have on regularly. So we shall see what happens going forward.

Since stopping the pill, I have noticed a reduction of IC symptoms and an increase in migraine symptoms. I have had less burning and general flaring in my bladder, although that was mostly when I was PMSing and on my actual period. So it’s possible that my body couldn’t focus on both my period and my IC at the same time and just had to pick one.

I think it’s really interesting that my IC symptoms have lessened. Will it last? I have no idea. It is way too early to tell. And my physical therapist agreed with me that it’s possible my body just decided to focus more on the pain of my period because that was more painful and shocking than my IC pain at this point in time. After all, I’ve gone five years without a period…but I’ve had IC pain for two years straight. So my body was probably just like…ugh sick of this pain let’s focus on this pain now!

The migraines have steadily been getting worse, along with my visual auras. Birth control plays a huge role in migraines and can even cause migraines. But it seems all the fluctuations in my hormones is really impacting my migraines now. So today I went to see my primary doctor who works with me on my migraine meds and we increased my daily migraine preventative medication. So hopefully that will help. *fingers crossed*

But let me really tell you what life has been like post-birth control. I can sum it up in one word…pineapple. It’s been pure hormonal chaos. I have been a crazy hormonal mess since then. Don’t get me wrong…I am always an emotional person. But this is a whole new level of emotional for me. I have strong cravings for foods I can’t and shouldn’t eat. I am breaking out…I have had more pimples on my face than I ever had before. I have mood swings in an instant. Birth control helped regulate all of that. OMG I miss it so much.

Aaron has had to put up with my crazy hormonal imbalances and this could go on for awhile…after being on birth control for 16 years, it can take anywhere from 3 months to 1 year for hormones to balance back out again. He has really been a champ…for the most part. He has been weathering this storm. And we even created a safe word for the occasions when I am just beyond hormonal and just can’t even. And that safe word is…you guessed it…pineapple. So when I say pineapple that means he knows to back off or something terrible might happen to either one or both of us.

Hormones are a bitch to control. It’s been so long since I have had to deal with them. I miss my birth control… so much. But I look forward to the healthful possibilities.

Image-I hate periods. Out of all things, why blood? Why can't it be fairy dust or glitter or something pretty?!
Image-I hate periods. Out of all things, why blood? Why can’t it be fairy dust or glitter or something pretty?!

 

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Keto IC diet update: one month

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

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

 

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Image: I didn’t quit! Yay! 

 

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

So what are my macros?

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

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

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

What kind of foods am I eating? 

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

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

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

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

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

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

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

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

Quest bar – 1  Rachel Bob – 0

Well played quest bar….well played.

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

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

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

 

Self-care: A love story for the new year

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

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

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

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

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

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

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

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

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

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

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

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

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

 

it-still-holds-true-that-a-person-is-most-uniquely-human-when-he-turns-obstacles-into-opportunities-1

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

 

 

 

 

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. 

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. 

 

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

 

 

 


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]

On the journey…

 

I don’t know why I am doing this. Creating a blog. But I need to make some changes in my life and maybe I can hold myself accountable. But if you have found yourself here… how the heck did you get here? Well, you might be here because you are someone that knows me and cares about me and wants to check in on how I am doing regularly. Or you might be someone who knows IC (personally or through a loved one) and you’re not a fan of it or are trying to understand it. Or maybe you know someone with migraines or another chronic illness.

My name is Rachel Bob and I have had migraines since I was 18 and I have Interstitial Cystitis. I was diagnosed with IC in early 2015. And nothing has been the same since, but actually even before that life wasn’t the same. But I am getting ahead of myself.

What is Interstitial Cystitis?

Interstitial Cystitis or IC (also referred to as Painful Bladder Syndrome…a very poetic name) is a chronic condition/disease of the bladder.

www.ichelp.org describes IC as a condition that consists of recurring pelvic pain, pressure or discomfort in the bladder and pelvic region, often associated with urinary frequency and urgency.

It’s all of that and so much more. It’s a comprehensive disease that impacts the body by radiating outward from the bladder. Every person who has IC experiences it in their own way and there is no one specific way to get IC. From my research, IC seems to strike for a variety of reasons and none of them seem interrelated. Although some people with IC, had many bladder infections or urinary tract issues prior so their IC might make more sense, if that’s even possible. But my IC hit seemingly out of nowhere.

My IC Story

To tell my story I have to go back to when I believe it all began.

It was Fall 2014, I was 28 years old and I had just begun my first semester at Gallaudet University in Washington DC. It was a very exciting time. But I got sick with bronchitis which was nothing new since I have had chronic bronchitis my whole life. Even on my three inhalers, antibiotics, cough syrup with codeine and steroids, I persevered and went to school (I wasn’t contagious). And then when I was finally feeling better in early October 2014, my dad died. I won’t go into great detail here, but he had been sick for many years.  It was a huge shock. And I got sick with bronchitis again. His death was incredibly stressful for my family and it took its toll on us. One month after he died, my dog died unexpectedly. She was 15 but still unexpected. In the course of one month, I lost two of the most important people in my life. And it got worse. The ‘relationship’ I was in which wasn’t that great to begin with quickly deteriorated because he couldn’t understand why I was sad and grieving all the time. He wanted me to just bounce back and be myself. So I stopped talking to him completely. And then my best friend at the time couldn’t handle my stuff so she disappeared from my life. I didn’t have time to dwell on the fact that my relationship and friendship were over because I was too busy trying to mourn my losses, all the while still in school. I came out of that semester with a 4.0 GPA.  No matter what happens ….I am determined to succeed. But it doesn’t end there.

The new year of 2015 came and went, I was in a foggy haze. Still trying to figure out what all just happened. I hadn’t been taking care of myself. In February, I thought I had a Urinary Tract Infection (UTI) so I chugged some cranberry juice and kept going on with life. But it didn’t get better so finally in March I took the time to go to the doctor for a UTI test. They tested, gave me antibiotics and it was negative. I went back a week later, still in pain. Test again. Antibiotics again. Negative again. They did some exams and tests on me but couldn’t figure out why I was still in pain. They sent me to a urologist. Luckily, I went to a doctor who was familiar with IC. Many people with IC are misdiagnosed for years before they find a doctor who can correctly diagnosis them. So in that sense…I was one of the “lucky” ones because I was diagnosed early.

Here’s a picture of me pre-IC. When I first got accepted to Gallaudet… I was so excited and happy. So naive to think that that feeling could last.

[image description: Me with long red hair, standing with a big smile, behind my car which as a new window sticker on it that says Gallaudet University from when I was first accepted into Gallaudet]