This is my journey down the path of invisible chronic illness and learning how to self-care. I have interstitial cystitis, chronic migraines, hashimoto's and more. But in between all the chronic illnesses, I have a life…kind of. -Rachel Bob
Wow.. it has been WAY too long. This past fall semester at school and in just in life has just been … what’s a good word for it???
Hectic. Relentless. Chaotic. All of that and then some.
So much has happened and I don’t even know where to begin. I’m not sure where I left off. But let’s just pick it up here.
-In July I had my tonsils removed which cured the chronic infections in my throat! Effectively ending what I unlovingly called Strepgate 2018. (And you can also read Strepgate part two here) woohoo! One problem down!
-But then I was diagnosed with Hashimoto’s Thyroiditis. At first, it was just a diagnosis of hypothyroidism and then with further testing, my doctor found that it was, in fact, Hashimoto’s. And for those of you unfamiliar with Hashimoto’s, it is, in fact, an autoimmune disease. **Woohoo my first official autoimmune disease!!! …. yeah… anyways. It’s an autoimmune disease where the immune system attacks the thyroid. I’m pretty asymptomatic and it was caught pretty early on for me, although I am always cold which explains that. So that’s fun…. or something. I have started taking Levothyroxine, starting at 50 MCG and have slowly worked my way up to 88 MCG over the last few months.
But don’t worry I’m not letting this keep me down. I’m still trucking through graduate school like it’s my fulltime job…. because it is. I have one semester left and I basically want to die.
At some point in time, I had botox for my migraines which was insanely painful. It was like 32 needles being jabbed into my head. But totally worth it. Not that it cured my migraines…it didn’t lol. But it didreduce the length and pain level which is saying a lot. And this past Friday, I went for a second round of botox! Yikes, spikes! But my neurologist has assured me that with each round of botox that my migraines should improve even more. So fingers crossed!
And speaking of needles, I began immunotherapy also. But what the heck is immunotherapy!? Well, let me tell you. It’s for allergies. I got in-depth allergy testing done at the beginning of the summer… A lot happened over the summer for me healthwise. Turns out I only have like three allergies…one kind of grass, one kind of tree and cockroach dander lol. BUT because I have asthma and get severe bronchitis every year (without fail). It has been recommended by multiple doctors that I try immunotherapy and hopefully it will improve my asthma and bronchitis issues. And you know what… why the heck not? I will do what it takes to improve my health.
So what does immunotherapy entail? Well, my allergist creates special allergen cocktails for me and I give myself shots every other day for two years! Yep, you read that right. Do not adjust the dial. I had to go to her office once a week for three weeks to get immunotherapy training (re: learn how to give myself shots) But eff that… easy peasy lemon squeezy. I have enough health issues… I’m not queasy about it, unlike my dear boyfriend, Aaron. Poor guy, any time he sees my needless out on he gets sickly looking.
Meanwhile, I just do what I got to do… because who knows..this could do the trick and make all the difference between yearly bronchitis or not! I’m down for it! So I’m here for it… giving myself shotsevery other day for two years.
-My interstitial cystitis was quiet for a while after I had my tonsils removed but in the last month it has flared up with a vengeance as if it was just waiting for me to think I was in remission and I could pee comfortably for once in the last 4 years. and then BAM! A killer bladder infection. Antibiotics and an antifungal, for a month, because it’s go big or go home over here.
-And I just completed my second to last semester of graduate school, getting my masters in social work, with a 4.0 GPA. It’s not easy being a full-time student, step-mom, cat-mom, and partner to my boyfriend while chronically ill. Next semester is my last semester and I will have a full-time internship, which should be interesting, to say the least. It takes a lot of planning and going day by day. Some days it’s not easy… it’s exhausting, relentless and chaotic.
Until next time… let us all remember that you don’t have to be perfect to be amazing.
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.
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.
And last picture below is our soon to be home as of August 4th. There’s no place like home. 🌈😍
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…
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.
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.
I woke up recently with a sore throat. And I know what that means… I’m getting sick. Getting sick when you are already sick is the worst. For me it goes something like this:
post nasal drip
drainage into lungs
more bladder pains
This has been the pattern my entire life due to the fact that I have chronic bronchitis. I can also get bronchitis from people, but I have never given it to anybody…it’s really jacked up.
When I get bronchitis my medicine bag fills up with… 2-3 inhalers (to be fair I always carry at least 1-2 inhalers with me for my asthma anyways, but when I have bronchitis my doctor might add on a third depending on how bad it is), antibiotics, steroids, cough syrup with codeine (to stop my lungs from spasming and aching), and non-Rx meds as well…like cough drops, Mucinex and ibuprofen. It really is just so much fun. This is an annual thing for me, no less than 1-2 times per year.
Last winter I had bronchitis, and of course, I had a terrible IC flare up when I caught a stomach virus from Aaron’s son, Reid. He had the bug for maybe a day or two and he was fine, but he was five years old at the time and much better off – healthwise. Whereas I was already sick and my health was extremely compromised. I just remember laying in bed unable to move… my bladder was on fire and flaring up, my stomach was hurting so badly because I needed to throw-up and my lungs were spasming and aching too. It was just a huge hot mess. It was an unfortunate experience that I never want to experience again.
Bronchitis impacts my IC because I have to take so many medications that inevitably one, some or all of them hurt my bladder in some way, shape or form. -Rachel Bob
When a person with chronic illness(es) gets sick on top of their chronic illness it puts their health in dire straights. It’s much harder for us to bounce back to our normal homeostasis due to our compromised immune systems. So a person without a chronic illness might get the same cold as me…miss a day of work or school, sleep 10 hours and wake up feeling better. I miss those days.
I sleep 10 hours and wake up feeling even worse because my body can’t fight off the cold and then my body immediately turns it into bronchitis. Every. Freaking. Time. I can’t remember the last time I got a cold and it was just a cold. Because for me a cold = bronchitis.
Because of my chronic illnesses and my diet, I am very limited on what I can take when I am sick with a cold and/or bronchitis. Cough drops, like Halls, which before I was diagnosed with IC I used to buy by the pound when I had bronchitis….they hurt me now. They have ingredients in them that actually hurt my bladder and make it burn something fierce when I pee…but they effectively stop my coughing.
While I have been able to find herbal cough drops that help, the issue ends up being that when my bronchitis is at its very worst, herbal cough drops don’t suppress my worst most productive phlegmy cough…only Halls do the job. I have tried so many different things as a chronic bronchitis veteran… So then I have to decide…what’s more important, my bladder or my lungs? I have to pick my poison. And believe you me…I am not the only chronically ill person who has to make these kinds of choices.
Deciding to treat one illness at the expense of another is just part and parcel of being chronically ill. – Rachel Bob
I have to check the ingredients of everything I put in my body, it’s frustrating. I can’t just buy chicken noodle soup because it has ingredients in it, like onions, pepper and what not, that I can’t eat. Which means I have to make it myself. And while I have become more adept at making my own food from scratch recently due to my Keto IC diet, when you’re sick… you don’t really feel like making food because…you’re sick. Although I am fortunate enough to have my mom and Aaron who are always happy and willing to make me food I can eat.
Being sick when you are already chronically ill is like hitting the jackpot of crap.
Side note…I recently went to see my doctor for my bronchitis. She looked at me and said you look like you’ve lost weight. she looked at my chart. But you’re the same weight as before…you’re stable. She looked up at me with a semi-quizzical gaze… you look like you’ve lost about 10 pounds. I told her about my new diet (that I cut out carbs and processed foods) and how I was trying to be more alkaline for the sake of my IC. She nodded in understanding. That’s it that. You’re less puffy…not as inflamed then.
I want to take a second to just soak that in. Less puffy. Less inflamed. 10 pounds.
Prior to going to the doctor, I thought I might have lost some weight, but I don’t weight myself so it’s difficult to gauge if I actually did or did not lose weight. But usually, I can tell by my waistline. I lost about an inch around my waistline…which is a lot. I lost about an inch of inflammation. That’s ridiculous and fascinating.
It brings up so many questions. Was I that inflamed because of my IC or because of my diet? Or both? Probably both. The Standard American Diet (SAD) is so acidic, so is it any wonder that so many of us have chronic illnesses nowadays. Although prior to the Keto IC diet, I was on the IC diet which was still pretty alkaline…before I was diagnosed with IC…I did eat the SAD and that’s probably what led me to where I am today…along with millions of other people. And the Standard American Diet is pretty sad…I think SAD is the perfect acronym for it.
But just thinking about it… I look like I lost 10 pounds… when it was all just inflammation, it makes me wonder about all the people who are actively trying to lose weight and could easily lose inches if they just ate a less acidic more alkaline diets.
Maybe my lungs are inflamed and angry right now…but at least the rest of me isn’t…score!
Raising awareness for Bronchitis my least favorite dinosaur
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.
And 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 a 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.
🔯And this is for my fellow Jews and people who appreciate Jew jokes 🙂 🔯
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 andadmit 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.
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.
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.
I just spent the last three days in DC. And the last day and a half I was holed up in Aaron’s (my boyfriend) apartment unable to leave because of the inauguration. So many roads were blocked off it was nearly impossible to get out. The March on Washington DC (and sister marches being held in other places) is happening now. So this morning I went home.
I left DC when the march happened. Why? I wanted to go to the march…very much so. I had been contemplating going to it for weeks. I talked to friends about it. My friend, Shelby and I made tentative but unrealistic plans to go. Neither of us went. My mom wanted to go too. How amazing it would have been if I could have gone with my mom and stand there with all those women for a purpose? That would have been amazing. But we didn’t go. Why?
Accessibility is a privilege that not everyone always has the benefit of having. Everyone has certain privileges. But today I want to talk about the privilege of being able to march and protest. All you have to do is pull up the live feed to see how many people are there, how much standing you have to do and how cold it is. It also makes me wonder how many bathrooms are around since I have IC and need a bathroom a frequently. I have back, leg and bladder pain which means I need to sit down a lot. And it’s very noisy and loud there which for me is a huge migraine trigger.
Just think about your triggers and what gives you a flare. Is it loud crowded places? Or standing for long periods of time? Is it walking for miles on end? Is it the stress of being in such an emotionally turbulent environment? It can be a plethora of things that set a flare off. We are all different. We don’t have the physical stamina or the ability to go for whatever health reason. But we have this in common…we are unable to go.
And now I sit here in my pajamas with my cat, Stanley, and I wonder…how many women wanted to go to the march but were unable to attend because of a chronic illness, disability or other health issues? How many men wanted to go to support the women they love but were unable to go because of chronic illness, disability or other health issues. Isn’t that sad? Chronic illness strikes again.
Feeling left out is a terrible feeling. I feel left out all the time because of my chronic illness. I have to conserve my energy all the time so I can’t do things. And I’m on a restricted diet so I can’t eat things that my friends eat. Those of us who live our lives with a chronic illness know how frustrating it can be…feeling left out. And feeling left out of the march is no different.
Disability issues…chronic illness issues…these are women’s issues too. Any issue that is important to us…that is a women’s issue
But as it turns out there is a virtual march to make the march more accessible to people with disabilities. We don’t have to be left out or left behind. We have a right to be involved. And the internet is the perfect way for us to do so. Now is the time for us to be loud and make ourselves heard. Now is the time for change because change is coming. Change is inevitable at this moment and we need to stand strong together as a community to make sure we have the changes we want and need. So be active and be involved.
Please don’t forget to be kind to yourself. Rest. Take your meds. Take a nap. Don’t allow the day’s events to stress you out too much. But I hope that everyone takes time today to watch the live feed on facebook, pull it up their twitter feed or just google it. Participate and get involved.
This inauguration impacts everyone. But for those of us with chronic illness, this is not just incredibly stressful but potentially life changing.
With Trump as the new president and Republicans looking to undo everything President Obama has done in the last eight years…there is a lot of havoc to be wrought. Especially in relation to healthcare. The Affordable Care Act (ACA) could be repealed…the decision that it could be repealed was made in the dead of night in a meeting probably held in some deep dark Republican chambers while they were all playing poker and smoking cigars while strippers danced around them…Strippers who likely couldn’t afford health insurance.
If they repeal the ACA, they are destroying people lives. We (chronically ill, sick, everyone who is alive) are essentially being told that we are not worth anything to even receive basic human rights that should be afforded to everyone. The United States is so focused on the bottom line that it can’t pull it’s head out of its’ own ass long enough to think about what it is doing to the people it claims to ‘support’.
It just so happens that through osmosis many of my friends also have one or more chronic illnesses. That is to say that I had these friends before I was in such poor health. If I didn’t have a support system who already have health issues (like Becca, Shelby, and Nai), I’m quite certain I would be much worse off than I am now. Having friends who have special diets and chronic illnesses normalized all of it for me. Not that it makes my struggle any easier because it doesn’t. But it is much harder to adjust to life with chronic illness when everyone around you is seemingly healthy.
But back on point…am I to believe that myself, my friends and the millions of other people who can’t afford health insurance or who couldn’t get it because of pre-existing conditions aren’t valuable in any way? It’s preposterous. That whole pre-existing conditions in health insurance was the bane of the chronically ill person’s existence. When that went away…omgwecangethealthcare! butomgnowwemightloseit…
As it stands, I can’t afford health insurance. I get what I like to call Poor People’s Health Insurance aka Medicaid. This is provided to me through the state of Maryland because I make below X amount of money every year. So what will happen to this program? I have no idea. I am terrified to find out. I depend heavily on my poor people’s health insurance. Could it be taken away from me??? It’s possible. The future of healthcare is uncertain.
I would like to add that the ACA is not ideal. It has huge flaws that cannot be overlooked. It’s expensive and it requires everyone to have health insurance, which in theory should be a good thing but it penalizes the people who can’t afford it. Impoverished people who can’t afford health insurance have to pay a yearly fine. For 2016, the yearly fine is $695 or 2.5% of your income, whichever is higher. WTF?!?! That is just beyond ridiculous. Although it should be noted that there are exemptions that can be made if you meet specific requirements. However, not all of the exemptions are automatically applied so if you don’t know about them you might get stuck paying the penalty fine anyways.
My point here is that ACA doesn’t work for everybody, that is a fact. There are also the people who can afford it but have large deductibles that ensure they do not get proper treatment until the deductible is met. Treatment is withheld until deductibles are met. Those deductibles could be as high as $7,000+. People are having to choose between treatment and food/home. That’s not exactly what I call ideal.
But do people care? probably not. And not about those who have a chronic illness. For those of us with invisible chronic illnesses, we might as well just be making up some fake disease…like purple lumpy spots or rainbow dragon measles…because often people don’t believe us. They are skeptical of us. You can’t see my migraines or the crippling pain in my bladder…but believe me it is there. I have no reason to lie about it. What if I had cancer? Would you believe me then?? probably. This brings up the issue of mental health for those of us with invisible chronic illness because it really does impact our mental health. Part of my health insurance covers therapy. I could lose that, which is incredibly disheartening to think about.
The stress of this inauguration makes me feel ill and gives me so much pain. That’s why I have been avoiding the news ever since the election. I can’t handle it. I know I am not the only one. I have friends who are in the same boat. If it’s been hard for me to deal with up until now… it’s about to get a lot hard with Trump being the actual President now. I can sit here all day and torture myself and make myself miserable…as I’m sure many others can and will do too.
But we need to be kind to ourselves. We can’t control what will happen. All we can do is try not to stress about it too much… because stress will only exacerbate our health problems and make us feel even worse. I know that’s easier said than done. But let’s just rest and gain strength for when we need it most. <3I found this meme upon a search of inauguration and chronic illness and it resonates so I am sharing it with image description below.
I found this meme upon a search of inauguration and chronic illness and it resonates so I am sharing it with image description below.
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
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 with 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 itand 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 meaneveryone… 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.
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 mymigraine 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.
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 wearmigraine 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.
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 sicknesslooks 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, likeHow 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 sinceI 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.
So do I feel pretty? no.
Do I feel pretty sick? You bet you sweet effing bottom I do.