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?  

 

 

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Off to see The Wizard

 

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[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!!!!

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[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!
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[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]
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[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.]
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[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]
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[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
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[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!
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[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. 

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[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

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.

 

 

 

 

 

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]

 

 

Taking back my life.

 

[Image description: If you change nothing, nothing will change]

To start I had physical therapy this morning with Dr. Jen. After the last session before the holidays which left me crippled and barely able to walk and flared up in pain beyond belief for almost two weeks, I was actually starting to feel a little bit of an improvement. Well…that’s the point of PT right? Just the last couple of days I have noticed less straining to pee. 

So today when I saw Dr. Jen, I told her what happened. And she said maybe we should take it easy. But I told her I’d rather push a bit harder now because I still have off of school for two weeks and I want to see more improvement by then. So we pushed and she said I handled a lot more pain today, much better than last time. Although she was doing some manual trigger points internally and at one point she pressed a muscle and it hurt so badly, I almost threw up. Wow, it was just so intensely painful.

On a less painful note, I recently got a book called The Chronic Illness Workbook: Strategies and Solutions for Taking Back Your Life. Written by Patricia A. Fennell, MSW, LCSW-R. 

Fennell discusses the four phases of a chronic illness (pg 37-38). It reminds me of the phases of grief in a way (Denial, Anger, Bargaining, Depression, and Acceptance) Although outside of these phases there is a huge grief cycle that people with chronic illnesses go through. And I am no different. Here are the phases that Fennell describes:


Phase one: Crisis 

This phase is characterized by crisis and chaos. And seeking relief of pain and hurt. 

Task: you and your support system are to deal with the immediate hurts or traumas of your new illness


Phase two: Stabilization

This is a plateau of symptoms and they become more familiar. You start to think that maybe you’re getting a little better but still continue to experience chaos. You keep trying to behave as you did before you got sick and this attempt frequently leads to relapses. These are very upsetting and feel like a personal failure.  

Task: Begin to stabilize and restructure your life patterns and perceptions

Phase three: Resolution

By this point, you have learned how your illness behaves and how the world responds to it. You’ve also finally learned that you can’t be the person that you used to be before you got ill. This can be a devastating perception. 

Task: Develop a new, authentic self and to begin to locate a personally meaningful philosophy to live by. 

Phase four: Integration

You are now able to integrate part of your old self from before the illness with the person you are now. 

Task: Continue to find ways to express your new “personal best” to reintegrate or form new supportive networks of family and friends. In total integration, you arrive at a new, whole, complete life, of which illness is only one part, even if it is an important part. 


I think I am somewhere between phases two and three. I’m just starting to realize that I can’t behave the same way I did before IC. I am in the process of learning that I can’t be the person that I used to be before IC.  I don’t think that the phases are static, they seem fluid and it would be easy to take one step forward and then two steps back.

Working with DeafBlind people was my entire reason for being. It was my passion, my motivation and my goal for years. I worked for two different organizations part-time as a freelance Support Service Provider with DeafBlind clients. And I volunteered on the Board of a DeafBlind organization for 3 years called Metro Washington Association of the DeafBlind (MWADB). These jobs were everything to me. I went to Gallaudet University (the only Deaf liberal arts university in the world) and got my BA in Deaf Studies with a focus on DeafBlind. I always said the Deaf Community is my home but the DeafBlind Community is my passion. And it gave me drive. But that changed. My health changed that. I am now in grad school to be a social worker, and I am hoping to specialize in working with DeafBlind people. But the issue is that working with DeafBlind people is all-encompassing. Even though there are such a variety of communication methods, working with DeafBlind people is a give it all kind of job. It’s mentally, emotionally and physically exhausting and that was one reason I always found it so rewarding. However, my body and my health disagree. My body can no longer handle to constant tactile signing or guiding people. My body can no longer handle how mentally exhausting it is to describe the environment to the best of my ability. 

When I could no longer give 110%, I knew I could no longer do these jobs. I had to resign…this just happened in the last week. And it has shattered my heart into thousands of pieces. I have met such amazing people in the DeafBlind community. And of course, I will still talk to them. But I was planning the long game in the DeafBlind community. That was my entire future. And now I am unsure if that is a reasonable goal. I have to take care of myself first. #selfcare

So yes…I am trying to take care of myself. I promise. I am solely focusing on grad school when this next semester starts. 

 

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[image description: A picture of a cartoon bunny saying “Your health and happiness come first. Never feel guilty for taking care of yourself.”]

 

 

 


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]

All the pain

[Image description: A 0-10 pain scale 0 with a green smiley face. 0-3 is green 1-3 is mild. 4 is yellow moderate. 4-5 yellow/orange. 6 is orange severe. 8 is sad face very severe. 7-9 is dark orange to red. 10 is the worst pain possible with a crying red face]

Here’s the real reason why I am here. Pain. I have been in pain since I was diagnosed with IC. But since September/October 2016 I have been having off the chart pain levels for both my IC and migraines.

For about a month, I had a migraine. I woke up with a migraine every day, which never had happened before. I’ve had migraines since I was 18 but never have I had a morning migraine. And now I was having them daily. I didn’t realize how long it had been going on, I was only minimizing the pain by taking Excedrin Migraine. My migraines we between a 7-9 on the pain scale for that long. I wasn’t on migraine meds because for a long time they were under control. But no longer. My sensitivity to lights, smells, and noises increased drastically. Smells that never bothered me before were coming at me like a blast of air in your face. And my visual auras, which are like headlights flashing in my eyes, were frequent as well.

I went to my doctor of 10+ years. She has seen me on every migraine med ever. We immediately got me on a preventative, Topamax (aka dopamax). And an abortive, Sumatriptan. As soon as I started taking the Topamax there was a huge decrease in my migraines. But my visual auras have increased and sometimes leave me feeling off balance. They are still continuing now. But we might be changing my migraine meds, at my next follow-up on January 4th, because of that. We shall see what happens.

I also bought migraine glasses, which are not RX, nor are they cheap. But they are made with a special tint, called FL-41, which helps to cut out certain types of light. I really like them when I am in the classroom because of the terrible fluorescent lighting. I would say that they have helped me a lot. They are worth the price of $149, if you have migraines with light sensitivity, you will understand it. I bought mine from https://www.axonoptics.com/  but there are different stores that sell them.

As for my IC, it turned into debilitating pain. The pelvic floor muscles, which everyone has, they sit at the bottom of your pelvis and cradle your bladder and uterus and whatnot. Mine decided to tense up as tight as possible. To the point where I can’t pee when I want or need to go. And because I have IC, I tend to have to go often…especially when I’m stressed. So not being able to pee really does not help the situation. I can sit on the toilet anywhere between 1-10 minutes before my muscles relax enough to allow me to pee.  Yea…it does hurt. This often ranges from a 7-10 on the pain scale.

My urologist referred me to a physical therapist for this. I have gone to physical therapy for this before, and at the time I thought that hurt really badly. Oh, how wrong I was. No this time around for physical therapy…is pure hell. Physical therapy for pelvic floor muscles involves manual internal manipulation of the muscles. This is why it can’t be just any old Joe PT Schmo off the street, it has to be a Physical Therapist who has had specialized training. But as one might imagine, internal physical therapy hurts something fierce. I had PT on my ankle and that hurt quite a bit and I didn’t like it at all. But PT for internal PFM is like no pain that can be described. So I’ll leave it at that. Afterward, I could barely walk for a week. Please understand she did minimal internal work, she didn’t push me too hard and stopped when I couldn’t take it. It was just my body’s reaction to be like OMG WTF ARE YOU DOING TO ME?!?!? I couldn’t walk or move. This was a 10-11 on the pain scale. It was bad. I expect it to happen again. Unfortunately. But I do see a difference, I have more release in my PFM. So the PT is working how it is supposed to.

Another symptom that was appearing during those months was all the muscles from my thighs to my abs were sore. This tends to be a consistent 5-7 on the pain scale. They felt like I had worked out a lot, which I don’t…because… IC. When I went to my now physical therapist, Dr. Jen. She told me that my whole body was tensing up because it was trying to protect my bladder and it was unable to release itself so it stayed tensed up all the time.  So needless to say Dr. Jen and I have a lot to work on. My main thing is: relax! lol Like it’s that easy.

On the journey…

 

I don’t know why I am doing this. Creating a blog. But I need to make some changes in my life and maybe I can hold myself accountable. But if you have found yourself here… how the heck did you get here? Well, you might be here because you are someone that knows me and cares about me and wants to check in on how I am doing regularly. Or you might be someone who knows IC (personally or through a loved one) and you’re not a fan of it or are trying to understand it. Or maybe you know someone with migraines or another chronic illness.

My name is Rachel Bob and I have had migraines since I was 18 and I have Interstitial Cystitis. I was diagnosed with IC in early 2015. And nothing has been the same since, but actually even before that life wasn’t the same. But I am getting ahead of myself.

What is Interstitial Cystitis?

Interstitial Cystitis or IC (also referred to as Painful Bladder Syndrome…a very poetic name) is a chronic condition/disease of the bladder.

www.ichelp.org describes IC as a condition that consists of recurring pelvic pain, pressure or discomfort in the bladder and pelvic region, often associated with urinary frequency and urgency.

It’s all of that and so much more. It’s a comprehensive disease that impacts the body by radiating outward from the bladder. Every person who has IC experiences it in their own way and there is no one specific way to get IC. From my research, IC seems to strike for a variety of reasons and none of them seem interrelated. Although some people with IC, had many bladder infections or urinary tract issues prior so their IC might make more sense, if that’s even possible. But my IC hit seemingly out of nowhere.

My IC Story

To tell my story I have to go back to when I believe it all began.

It was Fall 2014, I was 28 years old and I had just begun my first semester at Gallaudet University in Washington DC. It was a very exciting time. But I got sick with bronchitis which was nothing new since I have had chronic bronchitis my whole life. Even on my three inhalers, antibiotics, cough syrup with codeine and steroids, I persevered and went to school (I wasn’t contagious). And then when I was finally feeling better in early October 2014, my dad died. I won’t go into great detail here, but he had been sick for many years.  It was a huge shock. And I got sick with bronchitis again. His death was incredibly stressful for my family and it took its toll on us. One month after he died, my dog died unexpectedly. She was 15 but still unexpected. In the course of one month, I lost two of the most important people in my life. And it got worse. The ‘relationship’ I was in which wasn’t that great to begin with quickly deteriorated because he couldn’t understand why I was sad and grieving all the time. He wanted me to just bounce back and be myself. So I stopped talking to him completely. And then my best friend at the time couldn’t handle my stuff so she disappeared from my life. I didn’t have time to dwell on the fact that my relationship and friendship were over because I was too busy trying to mourn my losses, all the while still in school. I came out of that semester with a 4.0 GPA.  No matter what happens ….I am determined to succeed. But it doesn’t end there.

The new year of 2015 came and went, I was in a foggy haze. Still trying to figure out what all just happened. I hadn’t been taking care of myself. In February, I thought I had a Urinary Tract Infection (UTI) so I chugged some cranberry juice and kept going on with life. But it didn’t get better so finally in March I took the time to go to the doctor for a UTI test. They tested, gave me antibiotics and it was negative. I went back a week later, still in pain. Test again. Antibiotics again. Negative again. They did some exams and tests on me but couldn’t figure out why I was still in pain. They sent me to a urologist. Luckily, I went to a doctor who was familiar with IC. Many people with IC are misdiagnosed for years before they find a doctor who can correctly diagnosis them. So in that sense…I was one of the “lucky” ones because I was diagnosed early.

Here’s a picture of me pre-IC. When I first got accepted to Gallaudet… I was so excited and happy. So naive to think that that feeling could last.

[image description: Me with long red hair, standing with a big smile, behind my car which as a new window sticker on it that says Gallaudet University from when I was first accepted into Gallaudet]