My No Buy Year 2019

My no Buy year
Image description: My No Buy Year 2019

Here comes my first post in a series that is seemingly unrelated to anything and everything I will have ever posted here. However, this is a blog in my journey where I live less invisibly, where I open myself up and live an authentic life. This is a place where I hold myself accountable even. And that’s exactly what I am going to do in this upcoming year.

Maybe you already guessed by the title of the blog post but I am introducing you to my no buy year! Sounds exciting? or terrifying? maybe confusing? Yes to all of that. I recently learned of the no buy year online and was fascinated so I researched it. People who spend too much money frivolously on non-essential items such as clothing, housewares, makeup, plants and more. Anything you can imagine people buy in excess…

I think it is important to clarify what a no buy is and is not:

What a no buy is not

  • Buying absolutely nothing at all
  • Not buying the things you need
  • Not buying food
  • Not buying gas for the car
  • Not buying medication you need to survive

What is it then?!

  • Not buying things casually meaning no frivolous spending
  • Not constantly browsing for things to buy online
  • Not buying things you don’t need
  • Not buying more than what you need
  • Buying only enough of what you need
  • Buying replacements of or replenishing what you need, if and when your items run out
  • Cutting out temptation/unnecessary junk emails (unsubscribe from emails of companies you like to buy from, unfollow Instagram and Facebook, etc.)
  • Setting rules and limitations for yourself to follow
  • Appreciating what you already have

Alternatively, It can be…

  • A low buy – That is to say, instead of buying nothing, you can commit to doing a low buy. Which is just how it sounds. Basically, it’s a budget but it sounds nicer and a little less overwhelming for some people.  

What I have learned through my reading of blogs, watching vlogs and a book, that I now love called The Year of Less by Cait Flanders…is that it is important to create your own rules. There is no one way to do a no buy. It can be for any amount of time, some people do it for one month, others for 6 months. I have decided to do it for one year, actually, a lot of people do them for one year, because of the book The Year of Less. I had actually already planned to do my no buy year when I found her book and felt so lucky to find that extra support.

Oh my gosh, why would you even do that!?

I have asked myself this question a million and half times and I probably will continue asking myself why am I doing this over and over again. But my reasons are legit, I promise. I have found that in spending a lot of money I am trying to fill a void inside of me.

I have not mentioned here before that I have C-PTSD (Complex-Post Traumatic Stress Disorder), it is just not something I share with a lot of people but now is the time to be less invisible, it’s in my name! My C-PTSD leaves me with a lot of severe mental health issues that can easily go unchecked. In the last year, my spending habits on things have careened unhealthily out of control. After a lot of introspection and reflection on why this was happening, I realized it was because of my C-PTSD.

Mental health issues can account for impulsive spending habits and our consumerist society certainly doesn’t help. We are constantly bombarded with advertisements on TV, magazines, Facebook, Instagram, and other online sites…These remind us of all the stuff we want and should aspire to have.

Instagram perfect lives are what we all wish to have…but in reality, it’s just a singular pre-arranged filtered moment that someone created to make life seem perfect. What that person doesn’t tell you is how many times they had to snap that selfie to get just the right angle or lighting… or how long it took or much it cost for them to something. Or for stores to use Instagram as a platform to sell you things to have your perfect life. But really it’s all just to make you think you need more.

What I hope to gain from my no buy year

Well aside from having less stuff, in the long run, I plan to declutter things that I no longer need. I will rehome items that I no longer cherish. Find friends who might appreciate items or donate them.  I want to appreciate the things I have and just enjoy life…not things. Spending money on stuff will not make me happy. 

What else? 

Over the upcoming months, I will do check-ins, let you all know how I am doing. What I have bought or haven’t bought. In the first 13 days of my no-buy I have bought some things… that I neededOn the few occasions, I wanted things I wrote them down in a log, that I am keeping on an excel spreadsheet…if I still want them in a year maybe I will buy them then… or not. Understand..when I say I want things, these are things that I get in my brain and I feel like I NEED them but I know I don’t… like some makeup or a cute shirt or something that I have no need for. But I keep track of them to see where I end up in a year. 

Here’s the courage

In my previous post, My Year of Courage, I basically said this is a big year for me and this is one reason why. I have a lot going on this year and taking on a no-buy is a huge deal and takes a lot of courage…its a big commitment but I am ready for it. My health…physical and mental, need a solid commitment like this to carry me through. I don’t think I have ever committed to such a big undertaking. But I do believe that as a chronically ill person that it will benefit me greatly.

If I am spending less money on junk I don’t need, I will be less stressed out about money and stuff piling up in my home. I am committed to this. And my courage will get me through this, along with my lovely and wonderful support system.

My support system is my boyfriend, Aaron and my friends who will be there for me. Maybe I will feel like I need to buy something and I need to tell someone badly. So I text my friend and tell them about it to help me get through the year… this is the support system I have implemented for myself.

Should you do a no-buy?

That is 100% your decision, but just remember it can be as long or as short as you want. 1 month, 6 months or longer. Just make a commitment and go with it. Google it, research it. Message me and I’ll be happy to talk about it. 

Low-buys and no-buys are something to consider this year. If you think you can’t commit to such a thing…think again. Because when I thought about doing it at first…I thought it sounded insane. But I have fully committed. I made a whole plan which I will be sharing with everyone soon.  

What to expect from this No Buy commitment

Expect to see what kind of rules and limitations I have set up for myself in the next couple of weeks because this is a crucial part of a no buy. Without rules, doing a no buy would be very difficult if not impossible. In the upcoming months expect updates about how my no buy is going and how it is impacting me, mentally, physically and emotionally. 

Join me on my journey as learn what it’s like to not spend money during my no buy. 

More was never the answer. The answer, it turned out, was always less.
Image description: More was never the answer. The answer, it turned out, was always less. -Cait Flanders.
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2019: My Year of Courage

image description- courage doesnt always roar. sometimes courage is the quiet voice at the end of the day saying i will try again tomorrow.png
Image description: Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow”

My 2018 resolution was to pick a word and incorporate that word into my life. I like the idea of incorporating a word into my life that I wanted to practice or embody in the new year. The word that I chose for 2018 was self -care. I chose self-care because as a chronically ill person I feel that it is important for me to take care of myself, meaning set time aside to rest, consciously do things that I normally wouldn’t… like rest. 

For example, early on in graduate school, I would do school work long into the night…exhausting myself and quickly burning myself out. But through self-care, I realized that was unnecessary and unhealthy for me, so I established a rule: no school work after 9pm. And it was a beautiful rule that enabled me to know there was an end in sight. At 9pm, I would stop and I could do anything I wanted, watch tv, read a book or go to sleep… just not school work. 

If you haven’t guessed it already my word for this year is: courage

Courage (noun) cour-age \ker-ij  :mental or moral strength to venture persevere, and withstand danger, fear, or difficulty. Synonyms: bravery, daring, courageousness 

This is an anxiety-filled challenging year. And ya’ll I just gotta tell ya… I’m kinda shaking in mah boots. It’s a big year. First I have my full-time internship which is 32 hours a week (4 days a week) until May. This internship is a big one. It’s at a psychiatric hospital an hour away from where I live and it’s not only super important but incredibly challenging. The patient’s in the hospital were sentenced there by the court system after they were found unable to withstand being in the prison system do to being mentally incompetent. If you have been reading my blog for awhile you know my last internship was at a reentry organization where I worked with recently released inmates and went to the DC Jail on a weekly basis. So this internship is exciting and challenging. I started it on January 3rd…so far so good. I can talk more about it later.

Dealing with stress in any form can be impactful on chronic illnesses. As many people with chronic illnesses know…big life changes bring about big health problems. Do I worry that this might happen? Sure. Going into this new internship is exciting and stressful and it has caused a lot of migraines just from changing my sleep schedule.

After then I graduate. And I will be done with school for a while (until I decide to go for my Ph.D.). I have been a professional student for … well… forever. I love school. I’m not too cool for school as the kids say. I’m too school for cool.  

This will be the first graduation that I actually walk the stage for. I figure…well I didn’t walk for high school, when I graduated the interpreter program or when I got my BA in Deaf Studies from Gallaudet. But I am getting my MSW (Master of Social Work) from Gallaudet, so I might as well walk…even though I really don’t want to…it’s not something I’m interested in. It’s very stressful for me as a very introverted person. Also, I’ve been to graduations and just going causes me a lot of pain. By the end of it, I always feel worn out, exhausted, in an excessive amount of pain and have a migraine. So as a chronically ill person, it’s a lot for me too. 

But I was also threatened by my friend, Shelby (yea I’m calling you out)…. she said I have to walk or else. Or else what? Not sure. Didn’t ask. But let’s gather up the courage to do something I’ve never done before and walk that darn stage, right?! Here’s hoping I don’t trip and fall… Oy!

And then… getting a job? I’ve already begun the process of looking. But I’ve never had a full-time job. I’ve worked multiple part-time and/or freelance jobs most of my adult life. Until grad school, when it became too much for my health. I don’t doubt I’ll find a job, that’s not the issue. I’m more just worried about what it will do to my health. But maybe having a steady job will be good for me instead of the erratic schedule and heavy workload of grad school. Only time will tell. 

I also have a few other upcoming things that I will need courage for, but I’ll be explaining that in my next blog post. 

I believe that manifesting and mediating on courage each day will help me get through this year of unknowns. We can never know where life will take us but we can try to be courageous and brave while we are along for the ride! 

Do you have a new years resolution? Or a word you want to reflect for your new year? 

Here’s to a courageous 2019!

@rachelbob_here
Image description: Life shrinks and expands in proportion to one’s courage – Anais Nin

 

 

 

 

 

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!!!!

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]
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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]
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…..

 

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.”]

 

 

 


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.