2018: Reflections of a chronically ill 30-something

image description- dont expect any new years resolutions from me i plan on staying the same awkward sarcastic foul-mouthed delight that youve all come to know and love
image description- dont expect any new years resolutions from me I plan on staying the same awkward sarcastic foul-mouthed delight that you’ve all come to know and love

As I write this 2018 is drawing quickly to a close and oh what a year it has been: emotionally, healthwise, politically….don’t get me started.  As I am writing this from my bed curled up in a fleecy warm throw blanket while three of my four fluffy cats are lounging on the heated blanket I keep at the end of my bed.  And I am here ready to start reflecting on what 2018 has been like and what 2019 might bring. 

2018 has been filled with so many ups and downs. 

Health: I struggled with chronic throat infections for 9 months until I had my tonsils removed in July 2018, which was also my first surgery to date. I was diagnosed with hypothyroidism and then Hashimoto’s Thyroiditis, my first official autoimmune disease..soo exciting. I started Immunotherapy for my allergies, asthma and chronic bronchitis. I have had two rounds of botox treatments for my chronic migraines which will hopefully reduce my migraines long term.

My IC has been waxing and waning poetic with me all year. After my tonsil surgery, it seemed to go into hiding for a bit…maybe to give me a short break? But the last two months it’s come back with a vengeance and I’m in all the pain and just living the IC dream… which is to say I go to the bathroom 4-5 times a night plus some other stuff, which I’ll spare the details on right now. Am I missing anything?… hmmm I think that’s it… I think that’s more than enough. It’s been a busy year for me and my health! 

For 2019, I would like to see more health improvements. I would like the botox and immunotherapy to actually work and show signs of improvement. 

Educational: Going to grad school as a chronically ill person is a challenge, to say the least. But I just keep on truckin and now I just have one semester left! Granted it will be the most challenging semester because it will be a full-time internship where I work 32 hours a week (4 days a week) at an internship that is an hour drive from where I live. But going into 2019, I am looking forward to the internship and all that it will bring. 

Sleep: There are days I struggle to get out of bed because my whole body is rebelling against me and is screaming in pain. So at some point in the year, I started setting my alarm for 30 minutes before I needed to wake up so I could take some pain meds and/or CBD oil. And then I go back to sleep until my alarm goes off again. By the time I wake up, I am in much less pain. Looking back on this… this was a good choice, I will continue to do this going forward.

Emotional: As you can imagine all of this has had a lot of impact on my emotional well-being. Along with some other family issues that have been going on. I have been struggling with my mental health in 2018. But in 2019, I am really hoping to get a hold on it and this is something I will be talking about more in the weeks to come here on the blog. 

Relationships/Family: Relationships of any kind can be beautiful or devastating. I have been so fortunate to have friends and family support me along my journey. My best friends who are always there for me, even if we hardly ever get to see each other for one reason or another #gradschoolife. I have also had the blessing of finding a new family in Aaron’s family this year. His mom, as well as his brother, and sister-in-law plus their 3 kids have really become a beautiful family to me that I never expected. 

But I have also had the misfortunate of having devastating losses this past year. Some in the form of deaths in the family and others in the form of bridges being burned… but what I have learned from it… is that no matter what happens, life goes on and there is nothing we can do to stop it. 

Image description- In three words I can sum up everything I learned about life- it goes on
Image description- In three words I can sum up everything I learned about life- it goes on

Love: And, of course, there is Aaron who is right there with me no matter what, even when times are tough. We have a beautiful family together…Me and Aaron, our son, Reid and our four fluffy cats. We don’t have an Instagram perfect life and I don’t really trust people who do…or rather claim to have that. But push come to shove I know we are in it together when things are tough.  

Here are a few family pictures we took this year. All of our pictures were taken by the amazing Tiffany of TMGSFotographyShe can also be found on Facebook at TMGSFotography, she is local to DC/MD.

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Image description: Picture of Rachel, Aaron, and Reid all smiling but not looking directly at the camera. Photo courtesy of TMGSFotography
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Image description: Picture of Rachel, Aaron, and Reid all making funny faces at the camera and sticking out their tounges. Photo courtesy of TMGSFotography
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Image description: Picture of Rachel and Aaron holding hands and walking with their backs to the camera and then looking back to the camera and smiling.  Photo courtesy of TMGSFotography
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Image description: Picture of Rachel and Reid holding hands and facing each other smiling and laughing. Photo courtesy of TMGSFotography

Will 2019 be better than 2018? I sure do hope so. 2018 was filled with love and loss…ups and downs. But aren’t most years? I think that every year we hope that the next year is better than the last and it can be easy to forget that each year comes with its own set of challenges. I’m not being pessimistic, this is more realistic actually.

As a chronically ill 30-something who is going into my last (and most challenging) semester of graduate school, it’s easy for me to say that I am going into this new year with a brand new challenge. Am I looking forward to it? sure. Am I nervous and anxious? You bet! I have to earn 500 hours at my internship, from January 3rd to May 6th. So New year here I come! Jumping right into my internship…rolling up my sleeves saying EFF THIS, lets goooo!!!!

Okay, I’ll stop myself here. But I have so much more to say about resolutions and goals related to health. Expect another post soon! 

See you all in 2019!

image description- fireworks lightig up to say happy new year

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A New Diagnosis, Immunotherapy and More

Image description: Hashimoto’s is hard enough without people thinking that I feel fine because I look fine. I NEVER feel fine!

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 did reduce 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 shots every 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.

 

 

Live like a Warrior

image description-you dont look sick i know i'm just so awesome i can look this way and be chronically ill
image description-“you dont look sick” I know I’m just so awesome I can look this way and be chronically ill

“Fight like a warrior” – Matisyahu

In the chronic illness community, there is some debate about whether or not being called a “warrior” is a good thing. This is because a warrior is related to fighting which could mean that one is fighting themselves constantly. And while that is a distinct possibility and there are people who struggle with fighting against themselves and even I do that sometimes…where I fight against my chronic illnesses- leaving myself feeling only worse. 

The reason I like being called a warrior is so much more than that. A warrior can do more than just fight against themselves. 

Here are some definitions:

Warrior. noun.

1. A brave or experienced or soldier or fighter.

2. Any of a number of standing poses in yoga in which the legs are held apart and the arms are stretched outwards.

3. A person who shows or has shown great vigor, courage or aggressiveness.

I am a warrior because I fight hard to get up and live the best I can each day. The past couple of months since my last post have been hard. I have been completely immersed in my health this past summer. My hypothyroidism, migraines, throat (chronic infections) respectively. 

Goings on

For my underachieving thyroid: Overall things are steady with it right now, so that’s the best news to date. score!

For my migraines: Over the summer I had quite a few different tests to look at my brain and see what is going on in there. I had an EEG (this is like an EKG but for the brain specifically), MRI, MRA, and seeing an ophthalmologist to check and make sure nothing is going wrong with my eyes. The EEG was slightly abnormal so I will be seeing another neurologist who specializes in seizures very soon. And finally, I will be starting botox (for migraines) on September 14th. It’s not botox for wrinkles, promise. Google it. My neurologist has high hopes that it will help my daily chronic migraines lessen. *fingers crossed* 

For my throat: I had a tonsillectomy about one month ago on July 26th. And it was really painful, challenging and just all around sucky to heal. Tonsil removal for adults is completely different than it is for kids. Kids heal from tonsil removal in 5-7 days, adults heal in 6-8 weeks. Youth is truly wasted on the young….they just don’t know how good they have it. Plus my healing is slowed down a bit by all my chronic illnesses and jenky immune system. 

My boyfriend, Aaron, took great care of me during the first weeks after my surgery. Getting me twice daily Slurpees. But honestly, my throat is somewhat sore and while I’m working my way up to hard foods…after I eat them my throat hurts so badly that the only thing that soothes it is a nice cold Slurpee. So he willingly makes endless Slurpee runs and its amazing. 

Too School for Cool

Here are the facts… the new semester began on Monday, August 27th, ya’ll.  Just one month after my surgery. Was I ready…well in theory…nope. I began doing some coursework a week before the semester started so as to get a headstart which never hurts for me, especially with my health, I am often falling behind or at least feeling like I am falling behind. 

Graduate school is challenging. Not just like this is college so it’s hard, but whole other level hard and I am so fortunate I have survived to make it into my last year. Don’t get me wrong…I love a challenge. School is my favorite thing ever. This is officially my last year…two semesters to go! It’s bittersweet. I want to enjoy my last year but it’s hard as a chronically ill person because can I ever really enjoy anything fully? It’s a different kind of challenge because often I am just trying to get through things as a suffer through health challenge after health challenge. 

The important thing is communication with my professors and getting accommodations when possible. Universities and colleges should have an Office for Students with Disabilities (OSWD)that provide students with accommodations. This is not just for students with visible physical disabilities or ADD/ADHD and the like. This can be invisible chronic illnesses as well, as long as they are well documented by a doctor. 

My OSWD accommodations include:

* Extension of time on homework provided the extension does not substantially impact the student’s ability to participate in class discussions and activities, threatens the academic integrity of the curriculum or impede the accomplishment of the learning objectives.  The student must discuss this accommodation with his/her professors.
* Flexibility with regard to attendance. The student shall discuss this accommodation with her instructor in order to ensure that the number of missed classes does not threaten the academic integrity of the curriculum or impede the accomplishment of the learning objectives.
* Permission to take brief breaks during class.
* Permission to use a laptop during class for the purpose of taking notes.
* Instructor to alert student before flashing lights. You might think this accommodation is odd because who flashes the lights in class?!?! But maybe you read my about me page or maybe you will in a minute. But the shortish story is I go to Gallaudet University, the only Deaf Liberal Arts University in the world. Which is just like it sounds, a deaf university where there is no voice talking and while I am not deaf, I am fluent in American Sign Language (ASL) because my grandparents were Deaf. And it just happens that my boyfriend, Aaron is Deaf as well (also convenient after having my tonsils out when I couldn’t speak!). A common practice in the Deaf community to get a group of people’s attention is to flash the lights a couple times but flashing lights triggers my migraines…now that’s unfortunate! Which is why it is in my accommodations. And now you know…and knowledge is power!) 

My accommodations are game-changing for me; they make all the difference between passing and failing. I can’t remember if I mentioned it on my blog here before so I don’t know if I have a post to link…but I am on the OSWD Student Advisory Board, going on 2 years now, because that is how much I believe in supporting OSWD and the students who need their accommodations. 

So what is a warrior? 

Am I constantly fighting something you can’t see? …maybe. I’d like to think of myself as fighting for my life…as normal as possible but also not. I’m not normal…whatever normal is.  I get exhausted after unloading and loading the dishes, I can barely carry the laundry basket down to the basement to wash a load of laundry without feeling like my body will give out… but I never stop trying…I never give up. To me…that is a warrior. 

What is a warrior to you? Are you a warrior?  

 

 

Off to see The Wizard

 

IMG_4439
[Image description: a wooded area with a large green sign with silver lettering that says Land of Oz]
I know I didn’t post last week that’s because me and the fam (Aaron, Reid and I) were off to Oz! And by that, I mean the Land of Oz in Beech Mountain North Carolina. This is basically my dream come true. I have been obsessed with all things Oz-related since I was in the womb.

A true Ozian through and through

The Wizard of Oz was the first movie I ever loved and watched on repeat. I have multiple editions of the entire Oz book collection, of which there are 14 original books written by L. Frank Baum, most people don’t realize there are so many. The Wizard of Oz is based on the books The Wonderful Wizard of Oz and (loosely) Land of Oz.

And then there’s the Wicked series, of which I have all the books. And I have seen it twice on Broadway. And I’d love to see it again soon. Plus the Dorothy Must Die series only for those hardcore fans …it’s really intense and sheds a whole different perspective on what might have happened (not for children at all, very gruesome and makes Dorothy and all of Oz turn out to be quite evil…gotta love a nice perspective change though)

My house is covered with Oz paraphernalia. Magnets, signs, clothes, cards, dolls. And now I get to share it with my 7-year-old son, Reid. He is learning to love the magic of Oz too. And it’s nice to have someone to share it with. Afterall, The Wizard of Oz is for young and the young at heart. 

Here we are Halloween 2017. At Reid’s request, the whole family dressed up as The Wizard of Oz. From left to right: Selena (close family friend) as the Wicked Witch, Me as Dorothy, Fidel (Reid’s Step-Father) as Lion, Reid as Tin Man, Aaron as Scarecrow and Rayni (Reid’s Mom) as Glinda the Good Witch of the NorthIMG_0212.jpgIMG_1843.jpg

To Oz?! To Oz! or maybe its North Carolina! Either way…yay! 

We drove the long 8 hours to North Carolina. And I would be remiss if I didn’t talk about my health on my blog about my health while discussing this long journey to Oz. Fortunately, I didn’t have to walk the whole way in heels (which is the movie version of course) like Dorothy did just to get to the Emerald City. But nonetheless, the trip which was from Wednesday night to Saturday night left me in bad shape. Just three days, but those three days were jam-packed with stuff to do and fun-filled stress.

We had a ton of fun, the three of us. We did a lot of stuff. We went to local Deaf schools in North Carolina and Tennessee and had the opportunity to visit with family. But that’s a lot for three days. Especially for a Reid, who is 7 years old and has Autism and ADHD. And for me and my litany of health issues. Between the two of us, we were irritable and cranky….well mostly me. But we still managed to have a great trip. 

The Land of Oz has very limited days that it is open but I highly recommend it. We went and we did request an interpreter and it was, in fact, their first time working with Deaf clients but with guidance from us, they were able to find an interpreter for us which was awesome and quite accommodating. 

A vacay by any other name

Vacations are many things to many people. To some people, a vacation is a time to relax and time to rest. To other people, a vacation is a time to actually go out and do a ton of fun stuff…that makes it feels like you need a vacay from your vacay by the time you get back. Well by the time I got home I had to just lay in bed for days and honestly, I’m still recuperating from it, a week later. By the end of it… my vertigo which is related to my migraines was flaring badly (as well as actual migraines), terrible IC pain, awful PFD flare (pelvic floor dysfunction) and even my throat started hurting dreadfully again (which has generally been under control with antibiotics (until my tonsils are to be removed please see previous posts one this Strep-Gate Part 1 and Strep-Gate Part 2). 

At one point, I made the huge mistake of taking Reid swimming in the hotel pool. Which honestly I have avoided pools for a long time because I have read that the chemicals in pools can irritate and anger IC. But I did it anyway. Oh, the mistake I made. Do you ever do something knowing it will probably hurt your body but do it anyway because you think hey maybe it won’t?!?  

It was after that that my IC and PFD started flaring up something fierce! The PFD made it difficult to pee in the first place. If you’re unsure what I mean…make a fist squeeze it really tight…that’s kind of how it feels when I (and many other people with PFD) have to pee and then slowly release your fist over the course of 15-30 seconds… isn’t that a nice release? But imagine that happening over a longer period of time… like 30 seconds to 2 minutes. And when I finally can pee it bursts out with the white-hot burning razor blades. I hope that really set up an idea in your mind of what an experience is like going to the bathroom for someone with IC and PFD.

It’s cruel and unusual punishment that our bodies inflict on us. We, as humans, take using the bathroom for granted until you can’t anymore. On the days where I have little to no pain when I use the bathroom, I am so grateful and appreciative of each moment of it. And that could sound silly but you just read what I wrote so maybe you understand what I’m saying just a smidgen. Meanwhile…moving forward with the story to more happier things! 

Time for a few pictures!!!!

IMG_4478.JPG
[Image description: looking downward you can see the bottom of a blue and white gingham checked dress with white tulle peeking out, Rachel’s feet with tattoos on each wearing ruby red                       slippers (flats not heels) standing on the yellow brick road]                                                    Holy moly ya’ll I’m standing on the yellow brick road! look look!
IMG_4483.JPG
[Image Description; Aaron dressed up as Scarecrow standing in front of a fenced in fake cornfield with his arms up and awkward to make it look like he is hung up on a pole]
IMG_4485.jpg
[Image description: Reid smiling big and posing as the Tin Man with a hand on his hip and the other hand holding an ax that is placed in a tree stump that is part of the Land of Oz set up.]
IMG_4492.JPG
[Image description: Reid dressed as Tin Man walking down the yellow brick road. As the viewer, we only see him from behind as he starts his journey to the Emerald City]
IMG_4564 2.jpg
[Image description: From left to right Rachel dressed up as Dorothy holding the real Dorothy’s Basket and smiling big standing next to Dorothy, both of them are wearing blue and white gingham dresses. Aaron on the other side of Dorothy dressed as the Scarecrow with sunglasses on (unfortunately) and in front is Reid smiling as the Tin Man with his ax and heart] Sunglasses??!?! Come on Scarecrow! Otherwise this is such an awesome pic! Dorothy let me hold her basket!!! #nerdalert
IMG_4568 2.jpg
[Image description: My Two Dorothys! Rachel dressed as Dorothy smiling with Dorothy, also smiling, both wearing blue and white gingham dresses. Both Rachel and Dorothy have similar color auburn red hair.]   Is it just me or do we have like the same color hair? I realize that was not her real hair, it was a wig but just sayin! This is my real hair and omg!
IMG_4559.jpg
[image description: Rachel, Aaron, and Reid or Dorothy, Scarecrow and Tin Man Standing in front of the Emerald green gates to Emerald City]   Again with the sunglasses Scarecrow??! This could have been our holiday card… AHHHH
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[Image description: Rachel, Aaron, and Reid also known as Dorothy, Scarecrow and Tin Man pose on a pink platform surrounded by large beautiful flowers in Oz]  Finally Scarecrow without those sunglasses! sheesh. This is a pretty cute picture.  I approve!
There’s no place like home…

On the drive home, we saw two beautiful full double rainbows (pictured below). Through Tennessee, to Virginia, we drove through a big thunderstorm…no tornado… But the aftermath of which left us with those beauteous and magical rainbows that filled my heart with so much joy from an otherwise exhausting and painful trip.

Honestly, I wouldn’t trade that trip for anything…although I would have adjusted it some and added time to rest for myself and make sure to do some more self-care during that time. Everyone needs some self-care, some more than others. For those of us with chronic illnesses, we need to be sure to take extra care of ourselves on trips. And then we when get home allow ourselves time to rest and adjust back to life. 

Arriving home was just what the doctor ordered. I was so happy to just climb in my bed and lay there for days and days with my 4 cats.  A trip to Oz is priceless…to be sure, but knowing in your heart of hearts that there is no place like home…well that’s a lesson, , we all have to learn, like Dorothy did, one way or another. 

IMG_4669 2.jpg
[Image Description: Dense green trees and grass under a blue sky with two full rainbows, one rainbow is slightly fainter than the other, but both are distinctly there] Somewhere over the rainbow…..
 

 

Hey antibiotics, good to see you again!

 

image description- What shall I get for the girl that has everything? Antibiotics.
[Image description- What shall I get for the girl that has everything? Antibiotics.]
Hey friends!

I know it has been forever. Let me just tell you, grad school and chronic illnesses are kicking my butt…along with some other stuff, that I will surely get into soon. I barely have time to eat and sleep, let alone keep up with a blog. But the good news is I am officially on summer break and I am back at it!

I am back on this journey with you all. I have recently had a (strange) spike in my readership, which is odd considering I haven’t posted anything as of late. But that is encouraging because I love knowing that there is interest here…a community of people who want to read my insights, my life, my journey, my nonsensical ramblings and so on. It’s pretty freaking heartwarming. 

Okay, let’s get down to business..the real reason why you all are here…because you obviously came for my great sense of humor… or you want to hear the 411..the dealio, the dilly…the..yea I got nothing else. 

I want to say my health has been stable, plateaued or at the very least not gotten worse. But that would be a lie. I have since stopped physical therapy for my pelvic floor dysfunction (PFD), that has improved quite a bit! Which is always nice to say that I can basically go to the bathroom with ease almost anytime, except for when I am really stressed and my pelvic floor muscles contract and I just can’t pee for the life of me. 

Starting back in September 2017 my throat starts hurting, not just a normal aching throat or a strep throat but a very specific spot in my throat with a very specific piercing kind of pain. Unfortunately, during that time, I was … busy. Focusing on other health issues that were more predominant at the time and grad school of course. As a busy grad student I felt like I could only focus on one health issue at a time but at some point, I went to my primary care doctor and mentioned it to her and she did a strep test and it came back positive for strep type B. She gave me antibiotics after we got the results back because by that time I had already been on antibiotics for one reason or another (i.e. bladder infections, kidney infections, UTIs, bronchitis and so on) for about 7 months at that point. But hey what’s one more round of antibiotics to kill off some strep RIGHT?!??!?! HAH. If only… 

It’s a longgg story that I will save probably for either my next post or next’s week’s post. But for right now I will just say that my throat that started as strep has morphed into many things over the months and I’m on about my 9th round of antibiotics for my throat, no joke. So I’ve now been on antibiotics for a little over a year…which as we all know is great for your body. /sarcasm. But finally, my throat has been lowering in pain levels, at a slow but steady pace…more story on that soon.

While I have not been around to blog my life away, I have been deep in the experiences of my life and let me tell you, it’s been rough. There have been new challenges that pop up every single day. New challenges that are only complicated by my chronic illnesses. And isn’t that the thing about having a chronic illness? Healthy people with no disabilities, chronic illnesses, and/or mental health issues (however few of them there might be) just don’t realize how good they got it. They have “regular” life worries to get through. But for those of us who have that extra bit to struggle with…it just makes life that much more of a challenge. 

  • When will the next migraine pop up?/when will this migraine go away?
  • Where will I find the nearest bathroom approximately every 30-45min?
  • Will I be able to follow through on plans with family/friends because of *insert illness here*? 
  • Will I be on antibiotics forever? Can I sustain myself this way???
  • Will my throat hurt forever? Will I be able to eat solid foods again?
  • How will I live my best life knowing that even on my best day I am still in pain? 

These are just some of the questions I have to ask myself on a regular basis. It has become ingrained in me that this is my life now and it’s hard, not just for me but the people in my life as well.  I think sometimes the people in my life, like my boyfriend Aaron, get overwhelmed and forget that chronic illnesses, like mine, don’t just go away. Every once in awhile he gets frustrated at my migraines or some other symptom that I have. And maybe he thinks I’m using it as an excuse…I wishhhhh.  When I have a migraine for days on end I wish I was making it up because that would mean I could be having a good day somewhere in there. Or maybe my throat hasn’t been hurting since September 2017 because that doesn’t happen to real people, right? Can’t make this stuff up when you these invisible chronic illnesses that impact your whole body. 

Anyways, I’ll leave it here for now. 

Upcoming blog post topics to look forward to from me will be (not necessarily in this order):

  • Strep throat/E Coli in the throat or something else..wtf???
  • Going back to work after about a year and 5 months of not working (outside of going to grad school full time)
  • Being in a relationship with multiple chronic illnesses after 2.5 years 
  • A letter to my IC update – 1 year later 
  • A life without birth control update – 1 year later
  • Just how many medications do chronically ill people take??

 

image description-syringes lined up filled with different color glitter. capsules filled with glitter. Lettering that says Chronic illnesses are like pringles, you can't have just one.jpg

Food as medicine

 

[Image description- blue and white plate with spaghetti and homemade meatballs with a side of zucchni] 
 

After months of debilitating pain and frantic searches for meds of all sort, I have decided to do myself a solid and change my diet completely. I will be cutting out processed foods, sugars, carbs. My body is literally screaming for help at the top of it’s lungs and if I didn’t listen to it… not only would I be making myself miserable, I would have nobody to blame but myself for my own misery and pain.


After a lot of time in the IC Support group online, it seems that the people who have the most success in remission are people who drastically overhaul their diets. And use food as medicine. Approaching food as medicine and looking at the body in a holistic way makes sense for people with a chronic illness, like IC. 

After a lot of time in the IC Support group online, it seems that the people who have the most success in remission are people who drastically overhaul their diets. And use food as medicine. Approaching food as medicine and looking at the body in a holistic way makes sense for people with a chronic illness, like IC. Very soon I will be drastically overhauling my diet; cutting out carbs, sugar and processed foods. I never thought I would get to this point. I never thought I could or would. But I never thought I would give up orange juice or spaghetti sauce but I did because of my IC. And the pain continues. So the question becomes…what wouldn’t I do to make it stop? Maybe those foods don’t harm me, but I suspect they do. And yes they are delicious, but is it worth the pain they cause? Some people think so.

I understand that we have backward values here in America. We worship the carb, comfort food, and the fast meal. But we are killing ourselves, our children and future generations as painfully as possible by doing this. Chronic conditions are cropping up in droves among 20-30 somethings. Is it a coincidence? It could be. But it’s unlikely. We are products of the DNA we carry, what happens to us in the womb and of our generation. All of these factors are starting to add up and create chronic illnesses en masse where there was once none.

And it really doesn’t help that the medical community looks at us as body parts.

It has often been my experience with doctors, that they want to focus on the part of you that hurts. Where is the injury? IC is in the bladder; therefore we treat the bladder. But hey, here’s a crazy thought, I am more than my bladder. I could just be a giant bladder with long red hair… sometimes I definitely feel like that but in reality, I am a whole person. And IC needs to be treated that way, holistically.

Here’s a prime example of the medical community looking at me and just seeing a giant walking talking bladder. When I was first diagnosed with IC, I immediately began researching food to eat. I found that celery is extremely beneficial to people with IC so I made it a habit it to put it into my food every single day. So what can this celery do exactly? It can lower inflammation, reduces uric acid in the urinary tract (which is good to prevent UTIs and good for the burning while peeing that IC warrior’s experience). 

So… Celery! Who knew? Not my doctor, that’s who. I went to her bi-monthly in the beginning and I went to see her and told her this information. And she told me she never heard that before. I was flabbergasted. I realize that the medical community doesn’t care to look at the body as a whole and doesn’t teach food as medicine, but in all her years as a urologist working with IC patients…nobody ever told her that? or she never went a did a little extra research on her own??
When you, or a loved one, have IC, Migraines or other chronic illnesses, it is so important to do the research. Doctors serve a role and they do the job to the best of their ability. IC is a systemic issue that needs to be looked at and treated holistically. 

 

Image result for celery joke
[Image description: Celery is 95% water and 100%, not pizza. Below the wording is a logo from NBC that says The More you know floating on a shooting star]
 

 

 

Having a support system

 

[Image description: from left to right: Becca, Rachel, Aaron and Shelby standing next to each other and smiling]
A strong support system is crucial for people with chronic illness to survive and thrive. A support system can include family, friends, support group, doctors, other medical or holistic professionals. My support system is coming together nicely. 

 

The players:

Rachel – The One with IC and more

Debbie – The Mother

Aaron – The Boyfriend

Becca – The Thoughtful One

Shelby – The Cautious Optimist

Christine – The No Funny Business-er

Blinken – The Fluffy Cat

Stanley – The Ninja Cat

Marzipan – The Biggest Little Baby Cat

Ziggy – The Not-So-Nice Cat

Now that we have met the players and their roles. It’s important to understand how all of them will work on a macro and micro level. I know my relationship with each of these people as individuals so on a micro level it’s easy. But on a macro level, the system as a whole should work together fluidly. 

It’s important to find people who you trust, will be there to support you, have your best interest in mind and can be part of a team effort. This can be a difficult task to find a group of people. And for me, as an introvert, I don’t love the idea of having a group of people discussing my well being. But I need a solid plan and a strong support system. Each person

Each person in the support system plays their own role. One or two of them might be better at emotional support. While one might be better at providing support through actions, like someone who comes to see you once a week and cooks you dinner. They are showing you they care about you by being there for you regularly, even if they might not be the best with emotional support. And that’s okay if you have a strong enough support system then it’s good to have a variety of people who can provide different kinds of support. 

I will be planning a huge lifestyle diet change coming up within the next week or so. On Saturday, January 7th, my support system will have a round table discussion of what my diet will look like so that we are all on the same page. So I can go hang out with Becca and she already knows that I can’t eat tomatoes because of my IC and there’s a good chance I’ll cut out sugar and processed foods and so on. Everyone who is in my life already knowing will make it easier for me to follow through and be held accountable for my actions. 

 

Image result for creating a support system quotes
[Image description: Real friends support you no matter what. If you want to be a tuna fish then it’s my job to encourage you to be the best damn tuna fish that you can be.]
 

 

New year… New you??

 

[Image description: People treat New Year’s like some sort of life-changing event. If your life sucked last year, it’s probably going to still suck tomorrow.]
It’s a new year already. 2017. Wow. How does that even happen? The whole year flew by. 

 

Almost two years ago this March I was diagnosed with IC. 

One year ago this past December I met my boyfriend, Aaron. And on January 14th will be our one year anniversary, which is crazy because it definitely feels like 6 years. 

I am almost 31 years old; on January 18th. This is not where I expected to be at this point in my life. I’m not exactly sure where I expected to be. But I promise you it did not involve me starting a blog chronicling my journey with chronic illness. But here I am. I have given up so much in the last few months to be right here in this exact moment.  These chronic illnesses have kicked me until I was down and then pounced on me some more. I’d just like to take a moment and image what that would look like. I’m picturing a little brain (representing migraines) and a little bladder just jumping up and down on top of me. 

Anyways…back to the point, I never thought this would be me. Being forced to give up the goal and passion of mine that I have been working towards for years because of my health. It is heart-wrenching. Whenever I think about it I can’t help but cry. I will get into this more later…it’s still a very raw topic for me.

The only positive is that I am still in graduate school for Social Work and I have decided I want to add public health as a specialty so that I can work with and advocate for people who have chronic illnesses. 

 

new year? more like same shit, different year
[Image description: A Cartoon image of Batman looking like he is thinking and words overlaid that says New year…? More like..Same shit, different year]