It’s been awhile…with updates

 

my-expectations-for-us-moving-in-together-are-at-least-marginally-higher-than-the-medical-community-finding-a-cure-for-my-chronic-illnesses--d1fb0
Image: My expectations for us moving in together are at least marginally higher than the medical community finding a cure for my chronic illnesses.

Okay…so I’ve kind of dropped the ball here. But it’s summer… that’s the excuse I’m going with. I’ve been busy with a kid and packing. First I’ve been super busy on the mommy train…just daily entertaining and dealing with Reid as best as I have been able to. My first week off of mommy duty which was the past week and I have literally spent the entire week from the time I woke up at 8 am until midnight packing.

Packing??? What for? To move. Yea that’s right I said it. I’m moving. Don’t worry I’m not going to far…not even out of state. But nonetheless here I go. Aaron and I are moving in together. We have been searching for a place to live for the past few months. We found a house.

All of this on top of my health… has been … eventful. I’ve been on and off antibiotics for my IC. Currently, I am off of them. Which always makes me feel extra crappy and kind of like I am getting a kidney infection so I am waiting for my urine broth culture results to come back.

And my doctor increased my Topamax, which is my migraine prevention medication because the visual auras flashing in my eyes has been getting out of control. The biggest issue is the side effects of this medication include problems with memory and struggling with word comprehension…and yes those side effects do impact me quite a bit. I love it…./sarcasm.

But hey…we are moving! To a house just outside of Washington DC, still in Maryland. It’s about 20 minutes from Gallaudet so it will be an easy commute for me to get to school. It’s a four bedroom house, with a basement, a screened in porch, backyard, fireplace (which we won’t use because of my asthma and bronchitis). And the biggest and best advantage is its 5 minutes away from Reid’s mom and her boyfriend. We wanted to find a house that was as close to Reid’s mom as possible. And we did! Just a few streets over. The house is everything we were searching for. 

I realize it’s a bit out of the norm trying to move closer to your child’s other parent. Usually, people want to escape their ex. And maybe for awhile, they did. But now it’s all changed. The four of us, work together to parent Reid. We constantly tell him that he has four parents who love him so much. We do monthly family dinners and see each other often. And now we will live within walking distance so Reid can have a closer relationship with all of us.

I am excited about all of this. Moving in with Aaron is huge. I never thought I would end up in a long term relationship. And now I’m moving in with Aaron and we have a family. Me, Aaron, Reid and my four awesome cats (Blinken, Stanley, Marzipan, and Ziggy). 

Getting packed up is difficult for me for a few reasons. Firstly, I have a lot to pack up…but who doesn’t…amiright?! Secondly, having chronic illness defintely makes packing more of a challenge. I tire more easily and feel weary. I need to be careful that I don’t overwork myself or I could make myself sick. So I take frequent breaks to rest and sometimes I have to just move slower than the average person. I started packing awhile ago so I would have more time to pack up and get ready. 

I’m going to work on keeping this blog better updated while packing and moving even if it means shorter posts. 

I have a few pictures to share. The first is from a wedding of a good friend of mine that Aaron and I went to recently. I just thought the picture looked cute because we were all matchy and adorable. And I forgot what it feels like to put on dramatic makeup…purple eyeshadow with a dark eyeliner and what not. It’s been a really long time…not to mention heels. Wow… I forgot how much heels suck. lol. I haven’t worn heels at least since I injured my ankle a couple years ago. But luckily my ankle was fine. 

I guess I wanted to show this picture, because as I always like to emphasis as someone with invisible chronic illnesses…it can be difficult to tell that I am in pain and chronically ill. I clean up really well and people don’t realize how much pain I’m in when I’m standing there smiling like this. 

 

Image: Rachel and Aaron standing in a gazebo with scenic farmscape in the background. Rachel smiling, her hair up. She is wearing a purple dress with white polka dots and black heels. Aaron is smiling, has his arm around Rachel. Wearing a black suit and a purple dress shirt to match Rachel's dress.
Image: Rachel and Aaron standing in a gazebo with scenic farmscape in the background. Rachel smiling, her hair up. She is wearing a purple 1950s style dress with white polka dots, black tulle poking out from underneath and black peekaboo heels. Aaron is smiling with his arm around Rachel, he is wearing a nicely tailored black suit and a purple dress shirt to match Rachel’s dress and his black tie and purple polka dots on it.

And the next picture I wanted to share is just a nice pic of me, Reid and a starfish at the Baltimore aquarium. We had a lot of fun along with my best friend Shelby. One thing that I would like to say is that I am always honest with Reid about my pain. He might not know all the exact details of my pain and illnesses but he knows I have pain and that I am sick and he can tell when I am in pain. So he knew walking around the aquarium was hard for me, but I wanted to take him because we had been talking about going for awhile. He knew that we would take frequent rest breaks and bathroom breaks.

This picture doesn’t display the amount of pain I was in or the fact that I had just taken a bunch of ibuprofen and tramadol to get me through. But it does show how much fun we were having regardless of my pain. 

Image: Background is a tank at the aquarium with various fish swimming around and a starfish stuck to the glass. Rachel kneeling down with her arms around Reid smiling. Reid wearing a bright green shirt smiling really big.
Image: Background is a tank at the aquarium with various fish swimming around and a starfish stuck to the glass directly above Rachel and Reid’s heads. Rachel kneeling down with her arms around Reid smiling. Reid wearing a bright green shirt and smiling really big.

And last picture below is our soon to be home as of August 4th. There’s no place like home. 🌈😍

image-house first floor red brick with red front door and two front windows on either side. Second floor light blue paneling with three windows and blue shutters. Chain link fence surround
image-house first floor red brick with red front door and two front windows on either side. Second-floor light blue paneling with three windows and blue shutters. Chain link fence surrounding the house.

 

 

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I hope your antibiotics cocktail doesn't backfire, causing you to conceive and become an unwitting host to super-bacteria

Laughter is the best medicine…or is it?

I hope your antibiotics cocktail doesn't backfire, causing you to conceive and become an unwitting host to super-bacteria
I hope your antibiotics cocktail doesn’t backfire, causing you to conceive and become an unwitting host to super-bacteria

They say laughter is the best medicine…. but is it? Because recently, I’ve been in a lot of pain. I thought something was wrong with my right kidney. Went for a renal ultrasound last Monday and finally got the call yesterday saying nothing was wrong. Along with a serious attitude from my urologist. Gee…thanks. I hate my (now ex) urologist. 

Help wanted: New urologist who is nice and caring. Believes me when I say sometimes is wrong. Believes me when I say I have layered infections and doesn’t scoff at me when I tell her about my new IC practitioner who they have never heard of.  

Meanwhile, back with my IC practitioner who cares, Ruth…she got the results of my pathogenius urine culture. It was … colorful, to say the least. They found not 1…not 2… not 3…but 7 bacterias. Yes, friend, I said seven. Remember when I had E. Coli? Well, the E. Coli went away and then underneath of that there were 7 more delightful infections

36% Lactobaacillus johsonii -This is a healthy bacteria for your gut and has zero business being in the bladder.

31% Ureaplasma urealyticum – This is very commonly found in IC patients. The number was probably higher but I was recently on the antibiotic azithromycin (also known as zpack) for Bronchitis which is often used to treat ureaplasma. The ureaplasma can be carried and given back and forth by sexual partners. So in this situation, Aaron will have to be treated as well. That does not mean for sure he has it but really to prevent me from getting it again, he will be on a short-term (one week) dose of antibiotics. 

15% Streptococcus equinus – nobody likes strep. bleh.

2% Leuconostoc citreum 

2% Finegoldia magna

2% Lactococcus lactis

2% Acinetobacter radioresistens

So last week Ruth prescribed me more Bactrim to help me out until she could see what infections I had. And as we can see listed above…I have a lot. I will finish out my two-week dose of Bactrim and also she is starting me on two more antibiotics: minocycline and nitrofurantoin. I really don’t relish this process. Being on all these antibiotics isn’t great… but neither is being in so much pain from all these infections. I asked if it was possible that any of the infections could have traveled to my kidney. She said that was very possible. 

Here’s the thing. My urologist…did a renal ultrasound and the most basic urine culture ever and found nothing. nada. zip. zilch. She made me feel like shit about myself. If I didn’t have Ruth on my side… I would have felt hopeless. I knew the pathogenius urine culture ordered by Ruth would show results…I didn’t realize how many results… but I knew it would. 

There are so many IC patients and patients who have chronic illnesses who are treated so terribly by the medical community. It’s just not right.

Our doctors who took an oath to first do no harm…but my urologist did harm. She looked at me like I was insane when I told her what was going on. She made me feel less than. 

But I am not less than. I know my body and I know when something is wrong. And I know I am not alone in matters like this. This happens far too often. It’s really just unfair…more than unfair. It’s ridiculous. Ruth said something akin to I’d like to give these doctors IC for awhile and see how fast they end up in the ER from all the pain. They have no clue what it’s like to be in so much pain and for us to look to them for help only to be brutally rebuffed time and time again. We don’t deserve that. We deserve to be heard. Because what would have happened if I didn’t have Ruth on my side? My urologist would have just been like.. well nothing in your urine and nothing in your kidney…See ya next time. And I would have been sitting here unaware that I have 7 infections and nobody to help me. Which is such a bummer to think about. So let’s not. 

So on a completely different note… I had to get a TB test for my recently acquired internship…so the good news is… I don’t have TB. I am, however, still riddled with other diseases…womp womp lol.

And I’m on summer vacation. It’s …. yeah. weird. I have nothing to do. I’m not used to not working. I feel very useless. I’ve been reading. I have a nice mix of novels and social work type books related to my specialty that I am working on. But yea…besides that I have been going to a lot of doctor’s appointments, picking up Reid from school, hanging out with my cats 💗, ummm… watching stuff on Netflix. I really miss working right about now.

So is laughter the best medicine? For a lot of things…but not for infections. But I do often lean on laughter and humor to get through hard times. I’ve always said laugh or cry. Jews often use humor to get through hard times…that’s just how we Jew it. And I think that’s why I often use the Someecards in my blog posts because they make a great point and they are funny. And I shall leave you with this…

what shall i get for the girl who has everything? antibiotics
shall I get for the girl who has everything? antibiotics

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?!

 

Valentine’s Day: Chronic Illness Edition

valentines-day-chronic-illness-edition-1
Image-Valentine’s Day: Chronic Illness Edition. Below title is a large red heart with various pills inside of it.

I’m going to be honest with you here… I have never liked Valentine’s Day. I think it’s a contrived holiday that was made up by the greeting card companies and blah blah blah… you know the spiel by now. But last year was the first Valentine’s Day I’ve ever celebrated that made me somewhat rethink my stance.

Aaron, my boyfriend, and I had been dating officially for one month on Valentine’s Day…no pressure there lol. And unofficially dating for about two months. What he planned for me was so amazing that I can’t not tell the story. I’ll try to keep it short.

He planned a surprise…he likes doing that. So he picked me up and took me to his place, in Washington DC, where he cooked me an awesome dinner of spaghetti and homemade meatballs. But maybe it was too much excitement, but I got a migraine and felt terribly ill. I could barely eat, and we were supposed to leave to go on a weekend trip to a surprise location. He told me to rest, and if I wasn’t feeling well enough, then that was okay. I was not about to let this surprise get laid to waste. So around 8 pm which was much later than anticipated, we headed out to our destination about an hour away in Baltimore, MD.

We arrived at the Four Seasons Hotel. Swanky. When we got out of the car, we gave my bags to the doorman, and I immediately noted that he didn’t have bags. I realized he was already here earlier in the day. Which is crazy, because I live directly in the middle of Washington DC and Baltimore. So he drove to Baltimore to set things up, came to pick me up, took me to his apartment in DC and cooked for me and then we drove to Baltimore.

We get upstairs to the room, and he tells me to wait outside for a couple minutes. I wait for the longest couple minutes ever. Finally, he opened the door, and I walked into this…

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Image- picture of darkened room. Tea lights lit up and in the shape of a heart on the bed.

It was one of the most overwhelmingly emotional moments of my life. There were tea lights everywhere. It was so thoughtful and amazing that I was left speechless. 

He thought of everything down to the smallest details. I love the colors pink and silver. So the (fake) rose petals were pink and silver. And he found this adorable stuffed unicorn who was pink and silver. I later named her Doris. The shirt lying on the bed says Always be yourself unless you can be a unicorn then be a unicorn instead.

68f0bf3a-ccbd-4a84-a9bd-5d59a5f50261
Image- large white bed with two pillows at the head of bed. pink and silver rose petals scattered all over the bed. Eighteen tea lights lit up and in the shape of a heart. At the head of the bed is a t-shirt, writing is obscured and a small stuffed pink and silver unicorn sitting on top of it.

The next day he planned for us to go get a couple’s massage. Unfortunately, an unforeseen thing happened when the second we walked into the massage parlor and I was immediately assaulted with the scents of numerous candles. It was an instantaneous migraine. Who could have predicted that? But It was a really thoughtful gift anyways. I don’t remember last years Valentine’s day by the migraine I had, I remember the feeling of walking into the room and being completely and utterly overwhelmed and amazed by the effort he went through to make this such a special occasion. 

But that was then…this is now. How can this Valentine’s day ever compete or compare to that? The simple answer is…it can’t and it shouldn’t. 

I can’t always look to the past as an example of how the present should be even though it’s easy for me to remember the Rachel I used to be and think if only I was that Rachel still. No matter what happens, that Rachel as I knew her…is gone. I am forever changed by my chronic illnesses. 

Which brings us to present day- Today I went to physical therapy, it was excruciating and brutally painful in ways that a person who doesn’t go to physical therapy for Pelvic Floor Dysfunction can’t possibly understand. And my lower back is just in knots from stress, and my physical therapist was working on some trigger points to help with my lower back pain and now my back is spasming out in a way that is just too painful to describe at this time. 

Chronic illness change lives. It makes us feel like we are out of control. We survived the holidays and now it’s Valentine’s day. And maybe many of you don’t particularly care or maybe you are like me and were made to care by your loved one who showed how special it can be. But when chronically ill it’s all too easy to feel inadequate. 

You go out to eat a nice restaurant… no wait can’t do that because of the restricted diet your chronic illness has you on. You enjoy chocolates and candies that your loved one gave you… no wait can’t eat chocolate and candies either. Okay well, you appreciate the beautiful flowers they sent you at work… but wait…flowers cause a severe migraine and you quit your job because of your health. But certainly, they can light some candles and give you a nice massage with essential oils…no wait…migraines again. How about enjoying a little intimate time with your sweetie… oh you’re still in excruciating pain from your insert chronic illness and physical therapy… right. 

Okay, so what the hell can we do?? Isn’t that how it feels? When the world is seemingly buying chocolates, candies, candles and other stuff that we can only dream about; how can we ever hope to enjoy Valentine’s day again?

Well maybe you can’t subscribe to a classic Valentine’s day anymore, but you can certainly customize it for yourself and your loved one. All you need is a bit of creativity and thinking outside of that darn box that we have been stuck in for so long. 

So…Valentine’s day is tomorrow, but I’m sick still, my bronchitis is still holding on to my poor aching lungs for dear life, while my bladder, pelvic floor, and lower back hurt in some incredibly agonizing ways.

But Aaron and I already discussed and planned for a low key Valentine’s day; there will be no fancy hotel and massage this time around. But there will be Keto IC friendly pancakes, a blanket/pillow fort that we can cuddle up in, some romantic comedy classics and some other stuff which I can’t say because it will ruin the surprise. 

So is this the Valentine’s day of my dreams? Probably not. But I’m still pretty excited for what Aaron and I have come up with together…and that is all that matters. 

And if you are alone on Valentine’s day, show yourself some self-love by doing something nice for yourself…a nice Epsom bath or buy yourself something you love to (and can) eat. Just remember to be kind to yourself. 

 

 

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.

 

i-didnt-quityay
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…. 

2985d085fd363ba41d05138d2211c0dd.jpg
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.

 

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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.

 

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image: Bag of NO-oodles. All Natural. No Net Carbs. No Fat. No Net Carbs. No Gluten. No Preservatives. The Healthy Alternative to Pasta

 

 

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

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

 

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Image: Pint of Halo Top ice cream Vanilla Bean 240 calories per pint. Good source of protein

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

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

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

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

 

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

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“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.

 

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. 

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