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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Antibiotics and migraines are all the fun.

Why aren't side effects ever fun? They are never like these meds might cause you to have a party in your pants. No instead it's like nausea and dizziness.
Image- Why aren’t side effects ever fun? They are never like these meds might cause you to have a party in your pants. No instead it’s like nausea and dizziness.

I finally got over that terrible stomach virus and started my antibiotics (Bactrim) on Wednesday, April 12th. It has not been without issue though. I am a very sensitive being and I do get all the best side effects…. nausea, stomach aches, mild diarrhea. You know all the stuff I just had when I had that stomach virus… sigh. And I’m sure the side effects are worse now because I literally just had that virus too and barely had time to recover from it before I started the antibiotics.

Needless to say, the last two weeks has thrown my Keto diet  (I am still on the IC diet though) out the window with a vengeance. When the stomach virus hit me…I immediately started on sick food: saltines, ginger ale, homemade chicken soup, bananas, applesauce and the like.

I have now been on the Bactrim for 5 days…have I noticed a difference in my bladder??? Sometimes… sometimes I don’t. So it’s hard to tell. But I am only 5 days into a 2 week round of antibiotics. Only time will tell…Ruth tells me I should notice a difference but maybe it’s just hard to tell because of all the side effects I’m having.

I know the Bactrim will take care of the E. Coli… but who knows what else is in there. Ruth thinks there is another infection underneath the E. Coli. And I will be doing a test for Lyme’s Disease, which is from a tick bite…the test is called iSpot…it’s a blood test. I’ll be getting the blood drawn for that in May because I need to be off antibiotics for at least two weeks before they can test the blood. 

It’s difficult for me to plan my summer when I’m so unsure where my health will leave me a month…let alone next week. But I will say this… I will plan on resting as much as possible this summer. Not pushing myself too much or doing too much. I will start an exercise routine that isn’t too strenuous and that my physical therapist, Jen, will help me to plan out so that I don’t hurt myself further. I used to do yoga almost daily before I was diagnosed with IC. But once the IC got really bad it just became too painful to continue doing. So we shall see what happens…..

In others news…My physical therapist and I decided to take a break from pelvic floor therapy (PFT) while I am on antibiotics to see if there was any noticeable difference because it would be difficult to tell what improvements are happening if I am also doing PT.  So instead we decided to work on my migraines… I actually just got back from that a little while ago.

I will tell you this… I prefer the PFT, which sounds insane…because that’s internal PT that hurts so much. But this PT was like nothing I’ve ever experienced. I have trigger points all up and down my shoulders, neck, and head. Well…of course I do! Because I have chronic migraines…Duh! At one point she was pressing on a spot on my shoulder and it hurt so incredibly badly that I could feel it up in my temple. But she said that was a good thing because it meant that it was something we could work on… I was like…oh good…

Of course, it’s good. I know it is. But wow…I just did not expect it to hurt so incredibly much. It was just beyond brutal in ways that I can’t describe. It left me dizzy and disoriented. Luckily I don’t drive myself to PT…I always take Uber. My entire head, neck, and shoulders hurt… just like any other PT session. 

Also, I have increased my Topamax (aka dopamax), which is a migraine preventative, to the max dose- 100mg/daily. Which, of course, comes with its own side effects. Nothing is without side effects these days. Side effects like feeling dopey…hence the name dopamax. Forgetfulness, issues with word recall and understanding words…which is great to have when you’re in grad school. I don’t need words to write papers…nah. That’s silly. /sarcasm. 

image- My excuse for being brain dead is called Topamax. What's yours?
My excuse for being brain dead is called Topamax. What’s yours? Topamax aka dopamax

 

This semester can’t be over soon enough…Just two weeks left of this semester… I can and will get through this. This has been the hardest most frustrating semester I have ever experienced. I am not sure I will get through it with my sanity intact but as long as  I get through it… that’s the best  I can ask for at this point. I have a ton of school work to get done so I probably won’t write any new blog posts until the semester is over… but I’m sure you understand 🙂 xx

Image- Anyone can give up. it's the easiest thing to do but to hold it together when everyone else would understand if you fell apart... that's true strength
Image- Anyone can give up. it’s the easiest thing to do but to hold it together when everyone else would understand if you fell apart… that’s true strength

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?!

 

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!

 

Chronically Humorous

If there’s one thing I know as a Jew, it’s that no matter what happens, we need to keep a sense of humor during the hard times or we will never survive until the good times. That’s factual Jewish lore…straight from the Jew’s mouth…errr..hands…well you get what I’m saying. You don’t have to be Jewish to have a sense of humor, though. Obvi. I am merely pointing out what has inspired me to keep the home humors burning. 

Recently I came across a small yellow smiling bladder pin, call the Urine Luck pin. How adorable and weird is that? There was also have a magnet with that same smiling bladder that says, Don’t Stop Relieving. Two things about that…1) How cute! 2) This company called I Heart Guts makes plushies, pins and more, of the human organs. So those of us with chronic illnesses can embrace our dis-ease(s)…if you’re into that kind of thing. Personally…I am. They have this adorable yellow smiling bladder plushie, that I one day hope to take a selfie with. Maybe it’s a stand in for my actual bladder and I want to show my bladder how much I love it…so what if it is? Nothing wrong with a little self-love.

image-teal-colored-bladder-plushie-with-two-button-eyes-and-a-slight-smile-on-its-head-is-a-large-bandaidAnd then I came across an IC bladder plushie that stole my heart immediately. It’s teal, which is the color of IC awareness. And there’s a little bandaid on it… it is just perfection. Someone posted it in an IC support group on Facebook and they said they made it. As soon as I saw it, I knew I had to have it. I sent her a PM and asked if she sold them and where I could buy one. On her adorable Etsy shop, StitchandStuffed. (I do love me some Etsy!) I bought it and I anxiously await its arrival. 

It’s no secret that I, and other IC warriors, have to use the bathroom a lot. I don’t know about them but I hate sitting on a cold seat. I always dread it. And then I saw this whimsical gem of aimage-toliet-with-a-seat-cover-seat-cover-is-pink-with-white-polka-dots-and-has-a-bow-on-the-top-left-hand-side toilet seat cover, and I said to my cat, Marzipan, “Tell me I don’t need that in my life, Marzipan!” Marzipan looked at me like I was crazy and said, “Heck yea you need it!” People who know me, know that I love polka dots and the color pink (among other colors). So how cute is this seat cover? I haven’t bought it… yet. But I can just imagine…having to pee yet again. Walking to the bathroom with dread bubbling up inside of me because I know it’s going to hurt and I hate sitting on a cold toilet seat. And then I see the toilet seat cover. How can I not smile?? It will keep my tush warm, comfy and it’s just cute. Plus, when people come over and they go to use the bathroom, they will be like…what the heck?? It’s the little things in life. A bladder pin, a bladder magnet, a polka dotted toilet seat cover… etc… Obviously, these things are not laugh-out-loud funny. They are amusing and add whimsy to life. But humor comes in many forms. We cannot take it for granted. 

Something else toilet related that gives me a good laugh is this ongoing schtick me and Aaron have going, toilet related, of course. He says he always puts the seat down, which he doesn’t. So he started taking pictures each time he put the seat down and so I started taking pictures of each time he leaves it up. When it is all said and done, I do reckon that we will make a lovely wall collage of these pictures. It’s something we always joke about and we always text each other the pictures of toilet seat up or down. 

But each day is a depressing new struggle that just seems to bear the weight of all the days before it. That is so…depressing! Who wants to hear that or feel that all the time? Not me. But that’s my reality. And if you read my blog post from yesterday then you will know that I do struggle with chronic grief. But that’s why I am posting this because I have more than just grief. I have humor too. I have to find the things in this world that are funny, humorous, silly and whimsical, to get me through. Like bladder plushies and pins.

They say that laughter is the best medicine. Well anyone who is chronically ill might disagree, if only because we all know that laughter will not fix or heal our chronic pains. But laughter certainly is a good distraction from the pain. So when I’m in a lot of pain I often turn on Netflix and watch something funny to keep myself amused and my brain occupied. 

Like I always say…laugh or cry. Yesterday I cried. So today I am laughing. 

a-good-laugh-heals-a-lot-of-hurts-madeleine-lengle
Image: A good laugh heals a lot of hurts – Madeleine L’Engle

🔯And this is for my fellow Jews and people who appreciate Jew jokes 🙂 🔯

image-cartoon moses walking through desert saying "this way follow me!" a group of people behind him. a female holding a map and talking to a man. Caption says After 30.5 years of wandering the desert, Mrs. moses secretly asks for directions.jpg
Image: Cartoon Moses walking through desert saying “This way! follow me!” Group of people behind him. A woman holding a map and talking to a man. Caption says After 39.5 years of wandering in the desert, Mrs. Moses secretly asks for directions.

 

 

Chronically Grieving

It can be said that people who are chronically ill are often in a perpetual state of grief. That we are constantly grieving our losses…our health, our food, our friends, our habits, our errands…our lives as we once knew them. 

And I will just tell you right now, all of that is completely true. I feel as though I am in a constant state of grief. In an emotional upheaval that will likely never be subdued. I miss being Rachel. I miss being me. 

I am being forced to create a new identity that I am unfamiliar with. I don’t know this person. This chronically ill version of Rachel, who is but a mere shadow of my former self.” – Rachel Bob

This Rachel, who can barely walk up a flight of stairs without feeling like she will collapse from the pain. This Rachel, who tries to make sure she has everything, but if she forgets something that is just 15ft away….she views it as though there is an ocean between her and the item because for me to get up and walk that distance is often incredibly difficult and tiresome. I always think of it like viewing a mirage in the desert. I see the item, like my water bottle, and in reality its just 15-20ft away.  That’s usually when I remember the pain I will be in just getting there, and then that distance suddenly becomes a vast wasteland between me and the water bottle that I want so badly. And I see it getting farther and farther away… until it’s completely out of reach.

Who is this person? When just a few months ago I was myself. I was Rachel. The Rachel that enjoyed walking and wouldn’t mind parking at a distance because I had the privilege of being able to walk. I miss being able to walk.

People keep telling me I have such an amazing outlook on life. But do I? What makes my outlook on life so good? Because I have this blog where I can vent or because I haven’t put myself out of my misery yet? And people tell me I’m handling this so well. But I don’t feel like I’m handling any of this well. I feel as though I am struggling to keep my head above water.

There are so many changes happening at the same time that it’s hard for me to get back up again, once I’ve fallen off that darn horse. Like… I’m requesting accommodations from the Office for Students with Disabilities for my graduate classes. Accommodations as simple as being able to turn in an assignment late, not come to class or leave class early. That seems like nothing, doesn’t it? Actually, it sounds kind of awesome… all those extra benefits that most students don’t have. But I just had to jump through a bunch of paperwork hoops and admit that I’m disabled and need accommodations. Am I disabled??? And if I am…is that such a bad thing? Or am I just human? Maybe we are too hard on ourselves…specifically, maybe I am too hard on myself.

I mentioned before in a previous post that I use migraine glasses, which help reduce my migraines immensely during my classes. Which is awesome. However, they aren’t my favorite look. I had to buy a rolling backpack, which might seem like a silly thing but to me it’s admitting defeat. And think about it…A rolling backpack represents the knowledge that I can no longer carry my bag for one reason or another. I can’t because of my health. That doesn’t make me feel better about it.

Aaron bought me a gel seat cushion to use in my classes because the chairs put too much pressure on my bladder and pelvic floor. It’s really comfortable, but it’s kind of bulky. It has a convenient handle on it so I can put it over the handle of my rolling backpack and not have to carry it. It decreases my pain levels and allows me to sit through class easier. That’s good, right?  In theory…yes. But all of these little things add up… requesting accommodations, the rolling backpack, the cushion, the migraine glasses, etc… I never needed these things before. Why now? Will I always need them? I don’t know. I am doing my best to keep my head above the water. People see me making these changes for myself and assume I’m adjusting well…that my resolution of self-care is a success.

But in reality, my IC and my migraines are constantly pushing me under the tide. To be sure, my IC is my main issue right now… the physical exhaustion and extreme pain I feel because of it… is just ridiculous.

It’s hard to understand if you don’t have a chronic illness what it’s like to be grieving constantly for your health. But I think it’s safe to say we all understand grief. We all have known loss in some form or another. The loss of a loved one is one of the most difficult losses there is. On July 29, 2016, I lost the love of my life, Mikey. He was everything to me. He was 18 years old and we were together for 18 years. I was 12 years old when I met Mikey, it was love at first sight. He was and will always be the love of my life. Don’t get me wrong, I love my cats so much. But there can only be one first love and Mikey was it for me. He was there for me through thick and thin.

The grief I feel over Mikey is so heavy that I feel as though I have to wade through it daily. This is deep and personal grief that I don’t share with many people, but I feel the need to share it now because I want people to think about a loss in their life that caused them grief.

image-black-dog-mikey-head-resting-on-front-leg-ears-perked-up-and-eyes-drifting-off-to-the-side
This is my all time favorite picture of him. Image: Black chihuahua/rat terrier mix dog with head resting on his paw, one ear pointed upwards and eyes drifting off to the side.

 

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Gif of Rachel and Mikey. Rachel kissing Mikey’s smooshy face.

So why am I telling this story? Because loss impacts all of us…grief touches all of our lives at some point in time. There are different kinds of grief, different levels of grief. There is the Kübler-Ross model, that lists out the five stages of grief.

  • Denial
  • Anger
  • Bargaining
  • Depression
  • Acceptance

Each of these stages of grief is fluid, there is no set time frame for them to happen. Nor is there any set order they should happen in. You can go back and forth between any and all of them. There is no right or wrong way to grieve a loss. So when I think about grieving my health, does this model apply? Yep.

I can tell you right now I did not start this journey with denial. Oddly enough, when I was first diagnosed with IC, I started with acceptance because I thought I could control my IC. I thought I could have it beat in less than a year, which of course is incredibly unrealistic…which I know now. But because at the time I knew nothing about the reality of IC, all I could do was accept it and try to do the best I could. I am no longer in acceptance. I left acceptance awhile ago. I fluctuate mostly between anger, depression, and bargaining.

And yet I feel guilty for feeling this way. But why? Well, because my whole life has just been flipped upside down. I’ve had to quit my passion, which was working with DeafBlind people. Just imagine the thing you are most passionate about in the world. The thing you dedicated your life to… you found it and you have immersed yourself in it completely. This was my life…and now…it’s not. It truly breaks my heart.

How can I not grieve???

My life…that I so carefully cultivated and grew… that took me years and years to find my path. I was so lost when I was younger. I only knew that I was meant to help people, that I was meant to change lives. When I found DeafBlind work… it was kismet, bashert, meant to be, fate. It was everything I ever wanted a job to be… hands on and working one on one with people who I care about. I dedicated my life’s work to this. And now??? Sure I might be able to do some work with DeafBlind people here and there in the future if/when I am in remission. But I can’t get my hopes up just yet.

“When I think of remission… I think of a soap bubble. It’s not only beautiful and amazing, but it’s fragile and easily destroyed.” -Rachel Bob

And when people who are chronically ill have the hope of remission in the palm of their hands or floating just above them… the hope drives their every behavior and motivation. The thought of remission is what makes me continue the Keto IC diet, even though it is really hard and I just want a sugary delicious cupcake so badly. The thought of remission keeps me going when I have to swallow my pride and use a rolly backpack, a cushion, migraine glasses, etc… Even though I keep the hope of remission, the grief is still there. The grief does not just disappear.

But what we all need to remember is … that’s okay. We are allowed to grieve our losses as long as we need to.

 

Be on the look out tomorrow for a more uplifting post about chronic humor.

 

Too school for cool whilst chronically ill on my birthday

Okay, so it’s back to school time for me. I am going into my second semester of graduate school in the Social Work program at Gallaudet University in DC. This should prove to be an interesting semester. I will be taking three classes: Quantitative Research (online), Human Behavior in the Social Environment II and Forensic Social Work ( Forensic SW will be at George Mason University through the consortium of DC schools)

One lame thing is that my first class is on January 18th which is also my 31st birthday. thumbs down…lameeee.

As the weeks of my winter break have steadily crept by, I have rested as much as I was able to. Although during the holidays rest was not really an option. So I have tried my best to get rest since the new year. Going to physical therapy wasn’t exactly restful either. But as I sit here printing out my 30-40 page syllabi, I have realized that I am really not ready to go back to school. Graduate classes are challenging and I just have this flash in my mind of what my first semester was like…how completely overwhelming it was. And I am a good student. I love school. I have always loved school.

When I was a kid, if I got sick I would fake being well so I could go to school instead of having to stay home sick. I was that kid. Not like most people knew kids like that. But that was me. So that should give you an idea of what kind of nerd you’re dealing with here. #tooschoolforcool #nerdyandproud 

 

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Image: Rachel, age 7, smiling and laughing. Missing two front teeth and wearing a shirt with the Sign Language I love you hand on it.

My first semester of grad school, while my health was degrading fast..my pain levels were off the charts… migraine for over a month, pelvic floor muscles tightened up so I couldn’t pee and so much more pain. I had to stop working and volunteering but I still managed to get a 3.9 GPA. I am still a smidge bitter that it’s not a 4.0, but I know it’s because of my health.

All of that aside… I am really just worried how the semester will play out with my health. It should be considerably easier now that I don’t have a job. I am in the process of applying for SSDI (disability) so that I might have some form of income. Which does not thrill me but I should probably have money coming in sometimes. I also worry about my new Keto IC diet, how easy/hard will it be to keep up withimage-purple-lunch-box-with-large-teal-polka-dots after I begin going to classes.  Granted, I have one online class, one at Gallaudet’s campus and one at George Mason’s campus so I won’t be on campus too much. And so I just bought a cute new lunch box to help motivate me to make my lunch and snacks.  With such a restricted diet, it is very important for me to have food with me at all times in case I get hungry and need to eat. Nothing like teal polka dots to motivate me to make my lunch daily.

 

People with chronic illness often need to think about food. They often have restricted diets, elimination diets, food allergies and more. There’s always something we can’t eat. With my IC diet, I have a list a mile long of stuff I shouldn’t eat. This list which is published by the Interstitial Cystitis Association (ICA) breaks it down into three categories: Bladder friendly, Try it and Caution. It’s a comprehensive list that every IC warrior should take into consideration when changing their diet. And now with Keto added on, I am even more restricted, but that’s okay. It’s a challenge that will be worth it for my health. hopefully.

There is even a migraine diet. A lot of the triggers for migraines are the same triggers for IC. I suspect these triggers are common for many chronic illnesses. Because they are foods that aren’t necessarily nourishing to our bodies.

For a chronically ill person to truly heal…we need to nourish our mind and body. 

Truly going back to school is exciting. I have always loved it. I love buying school supplies. Highlighters, pens, journals and so on. But this time around just feels different. I am worried about my health. I am mourning the loss of my jobs and volunteer work. I am mourning my food losses too. And the fact that the first day of my semester starts on my 31st birthday… doesn’t help. *grumble grumble*

Being chronically ill during celebratory times is difficult. Heck… being chronically ill during non-celebratory times is hard. But when there’s holidays, anniversaries, birthdays… it makes us feel even worse. Because often times we are not up to participating because we are in pain or don’t feel good. Maybe we have difficulty walking, like myself. My ability to walk more than 5 minutes has been compromised and I need to build up my stamina and tolerance.  Nothing makes you feel worse than knowing you should be celebrating something, like my birthday or our recent one year anniversary, but not having the ability to really do anything to celebrate. That’s a hugely terrible feeling. It’s easy for us to fall into a chronically ill state of mind where we think that it’s just easier for us to do nothing and celebrate nothing because what’s the point? The people around us might not know what to do for us and maybe unsure if they should do anything for us at all.

Don’t do nothing. I will repeat: Don’t do nothing! 

Doing nothing is a slap in the face to your chronically ill loved one. Maybe your chronically ill loved one said they want a low key celebration. Okay, that’s fine. What’s their favorite food and dessert? Just have a small intimate dinner with the two of you or the family. Buy them a card. Get them a gift certificate or a gift you know they will love.  Google gifts for chronically ill people. You would be surprised at the amazing gift ideas that come up. There’s something for everyone. Everyone… and I mean everyone… no matter what kind of pain they are in or what kind of illness they have, deserves to have some celebratory moments now and then. We need them to survive the pain of the every day.

I want to have an amazing birthday because… I am alive and I’m only 31 years old.

But I will make the most of it. I celebrated my birthday with Becca yesterday. And there will be further celebrations this week. I will keep my spirits high and hope that this semester will be better than the last. I have high healing hopes. 

 

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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.

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