What doesn’t kill you…

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Image- That which doesn’t kill you gives you a lot of unhealthy coping mechanisms and a really dark sense of humor.

I’ve mentioned recently that I have been sick with bronchitis, which is difficult by itself. As someone who has asthma and chronic bronchitis, I can say that it sucks. It always makes me wish lungs were not required to live. I say this from experience… I’ve gotten bronchitis 1-2 times a year for as long as I can remember. 

And having bronchitis on top of IC and migraine and etc is a whole other challenge. 

But what happens when you get a new medication and you have a terrible reaction to it on top of being sick and having a chronic illness? Because that is exactly what happened to me this week. My doctor prescribed me a new inhaler called the Combivent Respimat inhaler…seemed innocent enough. It is a short-acting inhaler that helps to relax the lungs. 

On Tuesday, February 21 at approximately 4:30 pm I used the inhaler and then went to see a friend for a bit. We went to a chill place that is semi-noisy which has been known to give me migraines but I went prepared with earplugs and my sumatriptan, a prescription migraine abortive. We didn’t stay very long. I took a triptan around 5:30 because I felt a migraine coming on…but I had no idea of what was to come. 

I do have chronic migraines and I’ve had them for many years. But what came next was like nothing I have ever experienced in my entire life. I finished up with my friend and went to Aaron’s to eat but by the time I got there my migraine was hitting hard so I got my migraine hat (ice pack to wrap around the head) and laid down. It felt like there was 20 tons of pressure on my entire skull, which I’ve never had before. Not only that but my eyeballs hurt like they were ready to pop out of my head. And even my hair hurt! Yes…my hair… Like each individual strand. 

This migraine made my regular migraines look like fun little headaches…which they are not. -Rachel Bob

I’ve read stories in the migraine community about people’s hair hurting but I personally never experienced it…until now. It was excruciating…pure agony. I have a lot of hair, waist length, and it’s super thick Jew hair. There were a few points where I was just ready to chop it all off because I couldn’t take it. 

Aaron said “How is that possible? Hair has no nerves.” I said “How is anything possible? I don’t know. All I know is what I feel and my freaking hair hurts.” 

Aaron tried to get me to eat. And usually eating helps reduce my migraines but I could not eat because it physically hurt me to chew. At that point, I thought I might have to go to the hospital if this didn’t let up. So I decided if it didn’t improve by morning I would have Aaron take me to the hospital. 

One ‘good thing’, was that during this agony my body didn’t seem to register any other pain I was in… like IC or PFD. I was awake most of the night because I couldn’t sleep due to the tremendous amount of pain I was in and I was going to the bathroom frequently, but this time it wasn’t because of my IC. I think it was because my body was trying to get that medicine out of me. I went to the bathroom at least 10 times which is more than I usually go at night time. And every time I went…it didn’t hurt when I peed. Which was a miracle, but also, I’ll gladly take my IC and PFD pain over the agonizing medication migraine any day. 

Eventually, around 4 am I fell asleep. I woke up around 8 am with a lessened migraine…thank goodness. But I was beyond exhausted. I ended up canceling my day, which was therapy at noon and my class in the evening. Also sometime on Tuesday night when in the throws of that torturous migraine I realized I had a 2-3 page paper due on Wednesday and I was like well I’m not going to be able to do that now. 

I guess fortunately for me, I now have OSWD (Office for Students with Disabilities) Accommodations so that I can turn in assignments late and miss class if I’m in a lot of pain. So I emailed my professor to let him know that I will be turning in my paper late and missing class. It’s kind of “funny” because when I got those accommodations approved I said…yea but I won’t ever use them. And then the very next week here I am using the heck out of them. But with good cause. It’s not like I am making this up.

Because you can’t make this shit up. And it goes on. So then I wake up at 7 am expecting to feel better for my class at 9:30 am and guess what? I’m not better. My eyes hurt so badly I think they are going to just fall out…I can barely keep them open and they are puffy (not swollen shut but puffy). I still had a migraine as well, although nowhere near a bad as it was. But my eyes hurting came with extreme light sensitivity. Along with stomach pains and some vomiting. Okay..well guess I’m not going to this class either. I thought I really might have to go to the hospital. 

So I called my doctors office and left a message. I actually did send my doctor a message on Wednesday as well to let them know what was happening. They called me back a bit later that morning and said I should come in at 2:30. So instead of going to the hospital, I opted to go see my doctor. 

My doctor was shocked that I had a reaction this strong to this particular inhaler because it’s very similar to two of the other inhalers I already use. But I’m not surprised because that’s just me. If there is going to be someone who has a reaction to something that most people are fine with…it’s going to be me. I am so sensitive to everything. It’s a wonder that I am still alive. 

And then today I had my annual appointment at the gynocologist…yay…who doesn’t love that? meh. But I do love my gynecologist, I’ve been with her for almost a decade now. Unfortunately, today was my least favorite visit…were any of them my favorite? lol probably not. This is my first time back in for my annual with the diagnoses of interstitial cystitis (IC) and pelvic floor dysfunction (PFD). 

I had been nervous about the speculum and discussed it with my physical therapist. She told me I can tell my gynecologist that and request no speculum because of the PFD. So I talked to my gyno about it. But unfortunately, I have a history of pap smears that come up as pre-cancerous so she needs to really get in there with the use of the speculum. How can I argue with that? So she used the smallest one they had and it was very small, about the size of her pinky which is drastically smaller than I’m used to.

Unfortunately, it still hurt so freaking badly. And even more so afterward…I am now in the midst of a terrible flare. My bladder is spasming and freaking out. And my poor pelvic floor is just in agony. I know it was for a good reason…but FML. Haven’t I had enough pain for one week??? 

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Image- What doesn’t kill you makes you wish it did.

For those of us with chronic illnesses, this kind of stuff isn’t uncommon. Maybe my week was a bit more unfortunate than most. But this is our lives. It doesn’t kill us.. allegedly it makes us stronger…or so I’ve heard. 

Having a week like mine or even just a day with something more minor than what I experienced, can really set back those with chronic illness in ways that are hard to predict. It can cause flare ups that last extended periods of time or weaken their already weak immune system so they get sick. 

I didn’t even mention the stress of it all. Not just the stress of having the allergic reaction to the inhaler but having to miss my classes, which I hate doing. Stressing over whether or not I should go to the hospital. The stress of not being able to open my eyes or eat. And then going to the gynecologist is stressful by itself. The speculum. The flare. And so on. 

For people with chronic illness, stress is usually one of the biggest triggers. So how do we come back down from that? We have to remember to take care of ourselves. I committed to self-care and continue to do so. And we can all just keep in mind that…

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Image- What doesn’t kill you make you stronger. Except for bears, bears will kill you.

That Feeling of Indescribable Disconnect

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Image- “Acceptance doesn’t mean resignation. It means understanding that something is what it is and there’s got to be a way through it” -Michael J. Fox

I am elbow deep into my second semester of graduate school. Wow. It’s exhausting. My three classes are going well so far. I am taking Quantitative Research, Human Behavior in the Social Environment II (HBSE) and Forensic Social Work (FSW) at George Mason University. The FSW class at George Mason University (GMU) is particularly interesting. I don’t love my class schedule. Well… my Quantitative Research class is online which is great because I don’t even have to leave my pajamas for that.

Being chronically ill and going to grad school is a challenge. When I go to class, I have to make sure I bring everything with me that I need. First, there are the obvious school items like pens/pencils, notebook/paper, MacBook, day planner. And then for me, there are items like my alkaline water bottle, a cushion for me to sit on, sunglasses, migraine glasses, my regular glasses in case I need to take my contacts off, my medicine bag (which is just what it sounds like…it’s a make up bag filled with all the meds I take daily) and my Keto IC food in my polka-dotted lunch box. It always feels like I am taking a long trip when in reality I am just going to one class.

I was recently invited to join MuPi, the Master of Social Work chapter of the Phi Alpha Honor Society. The minimum GPA requirement is a 3.8, so luckily I got that 3.9. Well, we shall see how I fare this semester but I suspect it will turn out with similar results. I’m still a smidge bitter about that 3.9 but this too shall pass lolI can’t really be too upset about it because last semester my health was really bad off and I was in so much pain….really I’m lucky I made it through at all. 

Mu Pi, or Moo Pie as I like to call it, holds weekly meetings and I haven’t been able to attend any of them because they are at the same time as my physical therapy appointment. I changed my PT appointments for the month of March though so that I will be able to attend the Mu Pi meetings because I do actually want to be involved.

 

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Image: Rachel looking tired but smiling and holding up a certificate from MuPi

I recently had my request for accommodations through the Office for Students with Disabilities approved, which is bittersweet. My accommodations are: extensions on assignments, taking frequent breaks during class (for bathroom or pain), being able to leave class early or not come to class (with professor’s permission, of course). I hope I will never have to use any of these accommodations…but in a way, it’s nice to know that they are there as a backup in case I need them.

I am really struggling with all of this though. I know I am taking care of myself first and foremost. Self-care is my priority. But I have had to give up my life as I knew it in order to do this. And now I feel disconnected from all my classmates. It’s very hard. I only have one face to face class at Gallaudet with my actual cohort and it’s not enough time to spend with them, like last semester where I had three classes on campus with my cohort. And I haven’t been able to go to the Mu Pi meetings because of PT. My other class at GMU is with a whole other group of people who I don’t even know so obviously I’m not connected to them at all. I am literally an outsider in this cohort who has been together for almost two years. I feel disconnected.

Not to mention I miss the DeafBlind community so badly. The other day I saw a group of them chatting at Gallaudet. I wanted to go say hi but I had just finished my PT exercises and therapy. So I was physically and emotionally exhausted and in the pain…my body couldn’t handle it. And really I couldn’t handle it emotionally either. I would have become incredibly emotional and started crying because I miss them all so much.

I just feel this indescribable disconnect this semester.

I have given up so much. And I am really starting to feel my losses. I try hard to keep busy and since I have been so sick recently I have been distracted with that. But it doesn’t matter because at the end of the day I still feel lost and disconnected from people.

I am trying so hard to keep going and not let it get me down. I keep reminding myself I am doing what is best for my health. I can’t push myself too much or I will lose any progress I have made- healthwise. And I have made some…I have less inflammation in my body which is great. And I have short periods of time where I have less pain.

When people with chronic illness(es) commit themselves to self-care and improving their health, it is absolutely the right decision… but it is not easy. To some people, it might seem self-involved or selfish because all we do is think about ourselves and how things will impact our health. But it’s not selfish. We just want to be better…be healthy. I want to be the person I was so that I can do the things I used to do. I know if I just stop caring for myself now and try to go back and start working again I will hurt myself very badly.

Having chronic illness(es) is never easy. And when you start to feel disconnected from everyone around you… it’s all too easy to become depressed and isolated. I am fortunate to have my support system to back me up and be here for me when I need them most. But even having a support system doesn’t prevent the feelings of disconnect. This is something I will just have to process and go through. There is no fix it for this feeling. I can try to be more involved in some ways but I need to find the right balance. I am concerned about undoing all the progress I have made.

I am learning to accept my life for what it is right now. It is a struggle but I’ll get there eventually and I am sure by the time I get there it will change and I will have to start learning to accept it all over again. But that’s life…beautiful messy heartbreaking inspiring life.

 

 

 

 

 

Valentine’s Day: Chronic Illness Edition

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Thanks, Bronchitis

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:

  1. sore throat
  2. stuffy nose
  3. post nasal drip
  4. cough
  5. drainage into lungs
  6. bronchitis
  7. lung spasms
  8. misery
  9. bladder pain
  10. more bladder pains
  11. …deathhhh

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! 

 

 

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image-bronchitis is my least favorite dinosaur

Raising awareness for Bronchitis my least favorite dinosaur

#bronchititisdinosaurawareness 

 

Keto IC diet update: one month

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

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

 

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Image: I didn’t quit! Yay! 

 

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

So what are my macros?

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

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

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

What kind of foods am I eating? 

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

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

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

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

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

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

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

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

Quest bar – 1  Rachel Bob – 0

Well played quest bar….well played.

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

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

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

 

Self-care: A love story for the new year

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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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. 

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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.

 

Women’s March on Washington DC Meets Chronic Illness

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 gimage-selfie-of-rachel-and-stanley-rachel-with-glasses-on-and-hood-up-stanley-looking-slightly-dismayed-that-he-is-being-made-to-take-a-pictureo 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.

Afterall….this is history herstory. 

#disabilitymarch #womensmarch #womensmarchonwashington

 

 

 

Inaugural Impact on Chronic Illness

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.

image-inauguration-day-might-be-rough
image: posted by nudityandnerdery: Hey Everybody. Inauguration day might be rough. So here’s what I’m asking. You might remember it- Eat something. Stay Hydrated. Take your meds. Love the people around you. Get some rest. Don’t feel like you have to immerse yourself in the entire situation. Don’t be afraid to back off. Stop reading the news for awhile, put on some music you love, eat ice cream or something. Take care of yourself because that’s important.