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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On the road…to getting lost

 

I just finished my first semester of grad school. Go me! In the Social Work program at Gallaudet University. But in the course of one semester…so much has changed.

The workload of three graduate-level MSW courses was a lot more than I anticipated. I had to stop working and doing volunteer work. I only worked part-time on a freelance schedule and same with volunteer work. But my health tanked and fast during this past semester. My pain levels for my IC and migraines were off the charts.

And just as all this was happening my insurance company decided I don’t need my IC medication, Elmiron, anymore. Elmiron is on the only FDA approved med on the market specifically for IC and because of that it is very expensive at $3 per pill and I take 3 pills per day. Elmiron coats the bladder to give it a protective lining and it takes months (3-6 months) to work; I was on it for about a year. My insurance claims that I said it doesn’t help me, which isn’t true, they are just making stuff up because they don’t want to pay for it anymore. It is now in the appeal process. So my urologist will have to convince the insurance doctor that I need this medication. Which is insanity since I don’t know this person at all.

And let me just say when I came off the Elmiron, I felt it. It hurt more than anything ever. First I was so tense I couldn’t pee and I would sit on the toilet for minutes at a time just trying to relax my pelvic floor muscles enough (that’s what physical therapy is for, will discuss later) to actually pee. And finally, when I did pee, it burst out like molten hot lava and I just felt like I had to be urinating out the protective lining of my bladder…for days.

But there is a natural alternative called Marshmallow Root; similar to Elmiron in that it coats the bladder with a gelatinous coating to protect it. Many people who can’t afford Elmiron or decide to go on a more natural path, use Marshmallow Root instead. I have been taking the MR capsules 2 capsules 2x/daily. and drinking MR tea. The pain from coming off the Elmiron has subsided, so I’m just back to my usual pain.

I don’t know if and when my insurance will decide to approve me taking Elmiron again but I’m not sure I want to. I think I might want to stay with MR for awhile and take a more holistic approach. Which leads me to my next plan of action…drastic lifestyle diet change

My health is in peril. Clearly, whatever is happening, my body is screaming at all full force for help. And I have to listen because I can’t live this way.

 

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[Image description-if you listen to your body whisper, you won’t have to hear it scream]