Bonus Birthday Post: It’s a Birthday Miracle!

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It’s a miracle!

Warning: This is a rare positive outlook post containing wonderment and miracles! Do not read if you are in a bad mood and want to continue to be in a bad mood. If you want to continue to be in a bad mood click here.

Friends! It’s my birthday! January 18. Can you believe it? Well, you should because everyone knows it goes like this: Chanukah, Christmas, New Year, Rachel’s Birthday! That’s how it has always been…since the day I was born. True story. 

I am now 33 years old. Sheesh… My gracious. Friends… let me tell you it is just taking me forever to get to be the age I feel on the inside. I was born a baby… but on the inside, I was really a 65-year-old woman. Nothing said that more than when I was 10 years old than how much I loved my grandmother’s hand me downs. Like legit grandma clothes…stuff that no 10 years old should wear. But darn it if I wasn’t rocking it like I was a 65-year-old lady myself. I was all … long hair don’t even care. I got this amazing windbreaker from her, I wish had a picture. Anyways my point is… I’ve been old since I was born.

That being said …I have to wonder how does my no buy impact my birthday? If you haven’t read about my no buy year you can check that out here to learn more about it. But in general, it’s just how it sounds, but don’t make assumptions if you didn’t read the post.

Usually, I might buy myself a birthday gift…nothing specific, maybe a piece of jewelry or a piece of clothing I really like. This year…not so much. As they are non-essential items. Womp womp. And, even though I have been unsubscribing to every store ever on email (which btw has really streamlined my emails) I still get stuff in the mail. So I get birthday coupons and discounts in the mail from stores encouraging me to shop there for my birthday and get a free gift!!!

I started getting those in the mail and email in December, friends! December!!!! Really uncool. Talk about catering to consumerism. It’s your birthday… buy $30 worth of stuff and get a $10 item for free!!!! Uncool! 

Usually, I would be all over it. Because it’s my birthday! But now it’s the first month of my no buy year which makes for a lackluster birth month… or does it? I think it makes my birthday a bit more special because I am realizing that I don’t need to be buying all the stuff to just have a good birthday. Because I got better stuff anyways…

So not to be awkward… but what’s this miracle you are talking about?

Right…let me tell you about my miracle! (Which is the better stuff btw!) As many of you already know, since you are here, I have many a chronic illness…a couple of which are asthma and bronchitis. Back in November, I began immunotherapy. If you haven’t read my previous post which goes into detail about what it is… Immunotherapy is basically an allergen cocktail to help boost immunity to allergens. My immunotherapy shots are done in both arms every other day, and yes …I do the shots myself…eek! It’s not so bad lol.

Here is a picture of how I set up my stuff when I do my shots every other day. I have my biohazard container for used needles, syringes, two vials of allergen serum created specifically for me and off to the side is a bottle of Benadryl because my arms get incredibly itchy afterward which is normal and taking the Benadryl helps to ease the itchiness.

 

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Image description: Set up of my every other day immunotherapy shots which includes: two vials of allergen serums, alcohol prep pads, two insulin size syringes, biohazard container and log to write down that I did my shots.

The purpose of these shots was to ease my asthma and bronchitis which is exacerbated mostly in the colder months. If I get a cold…it becomes bronchitis. If someone else has bronchitis…I get bronchitis. There’s generally no stopping it. Asthma and bronchitis are my longest running chronic illnesses that I have had since I was a child. And I get bronchitis yearly without fail…sometimes multiple times a year.

Okay…so where’s the dang miracle?!?!

This past week my 8-year-old stepson, Reid, became sick… he had a fever and started coughing. Usually any time he is sick and in the house with me…I get sick without fail. I don’t have the immunity to fight off the sickness. I kept washing my hands and just praying and putting it out to the universe that I wouldn’t get sick. 

And then yesterday (Thursday 1/17/19) Aaron took him to the doctor and it turned out he has bronchitis. He has bronchitis?!?!?!?! But I don’t?!?!?!?!

Back the truck up… On Wednesday 1/16/19 I went to see my allergist for a check in to pick up new vials of serum and she told me that the immunotherapy could be working for me. Since it’s winter, now is the time that I would be noticing the difference. And then Thursday Reid has bronchitis …and I can see the light!!!!! And immediately Fiddler on the Roof, Miracle of miracle started playing in my head. 

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Image description: Gif from Fiddler on the roof. A scene from the song miracle of miracles with Tzietel and Motel running through the forest. Text says Wonder of wonder, miracle of miracles!

I am absolutely thrilled for this birthday miracle. Friends, I can’t even tell you how many times I have been sick with bronchitis on my birthday. But not this one! Huzzah! It turns out there is still hope for random treatments working. My doctor and I tried this immunotherapy treatment as a sort of sweeping grand gesture last resort because there was nothing else left that would work for my asthma and bronchitis and there was really no assurance that it would work.

I don’t know if it will continue to be bronchitis free but I know that for right now I managed to live in the same house with bronchitis and not get it! This was just a short-ish bonus birthday post that I wanted to post today to share my excitement for this miracle that I am experiencing. I’ll post again at my usual time on Sunday!

This does indeed feel miraculous and wonderous. Happy birthday to me! 

Never stop believing in hope because miracles happen everyday.jpg
Image description: Never stop believing in hope because miracles happen every day.

 

 

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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.

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

 

 

 

 

 

2018: Reflections of a chronically ill 30-something

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

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

2018 has been filled with so many ups and downs. 

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

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

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

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

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

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

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

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

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

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

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

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Image description: Picture of Rachel, Aaron, and Reid all smiling but not looking directly at the camera. Photo courtesy of TMGSFotography
17a.jpg
Image description: Picture of Rachel, Aaron, and Reid all making funny faces at the camera and sticking out their tounges. Photo courtesy of TMGSFotography
22a.jpg
Image description: Picture of Rachel and Aaron holding hands and walking with their backs to the camera and then looking back to the camera and smiling.  Photo courtesy of TMGSFotography
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Image description: Picture of Rachel and Reid holding hands and facing each other smiling and laughing. Photo courtesy of TMGSFotography

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

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

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

See you all in 2019!

image description- fireworks lightig up to say happy new year

A New Diagnosis, Immunotherapy and More

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

Wow.. it has been WAY too long. This past fall semester at school and in just in life has just been … what’s a good word for it???

Hectic. Relentless. Chaotic. All of that and then some.

So much has happened and I don’t even know where to begin. I’m not sure where I left off. But let’s just pick it up here. 

-In July I had my tonsils removed which cured the chronic infections in my throat!  Effectively ending what I unlovingly called Strepgate 2018. (And you can also read Strepgate part two here)  woohoo! One problem down! 

-But then I was diagnosed with Hashimoto’s Thyroiditis. At first, it was just a diagnosis of hypothyroidism and then with further testing, my doctor found that it was, in fact, Hashimoto’s. And for those of you unfamiliar with Hashimoto’s, it is, in fact, an autoimmune disease. **Woohoo my first official autoimmune disease!!! …. yeah… anyways. It’s an autoimmune disease where the immune system attacks the thyroid. I’m pretty asymptomatic and it was caught pretty early on for me, although I am always cold which explains that. So that’s fun…. or something. I have started taking Levothyroxine, starting at 50 MCG and have slowly worked my way up to 88 MCG over the last few months. 

But don’t worry I’m not letting this keep me down. I’m still trucking through graduate school like it’s my fulltime job…. because it is. I have one semester left and I basically want to die. 

At some point in time, I had botox for my migraines which was insanely painful. It was like 32 needles being jabbed into my head. But totally worth it. Not that it cured my migraines…it didn’t lol. But it did reduce the length and pain level which is saying a lot. And this past Friday, I went for a second round of botox! Yikes, spikes! But my neurologist has assured me that with each round of botox that my migraines should improve even more. So fingers crossed!

And speaking of needles, I began immunotherapy also. But what the heck is immunotherapy!? Well, let me tell you. It’s for allergies. I got in-depth allergy testing done at the beginning of the summer… A lot happened over the summer for me healthwise. Turns out I only have like three allergies…one kind of grass, one kind of tree and cockroach dander lol. BUT because I have asthma and get severe bronchitis every year (without fail). It has been recommended by multiple doctors that I try immunotherapy and hopefully it will improve my asthma and bronchitis issues. And you know what… why the heck not? I will do what it takes to improve my health. 

So what does immunotherapy entail? Well, my allergist creates special allergen cocktails for me and I give myself shots every other day for two years! Yep, you read that right. Do not adjust the dial. I had to go to her office once a week for three weeks to get immunotherapy training (re: learn how to give myself shots) But eff that… easy peasy lemon squeezy. I have enough health issues… I’m not queasy about it, unlike my dear boyfriend, Aaron. Poor guy, any time he sees my needless out on he gets sickly looking. 

Meanwhile, I just do what I got to do… because who knows..this could do the trick and make all the difference between yearly bronchitis or not! I’m down for it!  So I’m here for it… giving myself shots every other day for two years.

-My interstitial cystitis was quiet for a while after I had my tonsils removed but in the last month it has flared up with a vengeance as if it was just waiting for me to think I was in remission and I could pee comfortably for once in the last 4 years. and then BAM! A killer bladder infection. Antibiotics and an antifungal, for a month, because it’s go big or go home over here. 

-And I just completed my second to last semester of graduate school, getting my masters in social work, with a 4.0 GPA. It’s not easy being a full-time student, step-mom, cat-mom, and partner to my boyfriend while chronically ill. Next semester is my last semester and I will have a full-time internship, which should be interesting, to say the least.  It takes a lot of planning and going day by day.  Some days it’s not easy… it’s exhausting, relentless and chaotic. 

Until next time… let us all remember that you don’t have to be perfect to be amazing.

 

 

Live like a Warrior

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

“Fight like a warrior” – Matisyahu

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

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

Here are some definitions:

Warrior. noun.

1. A brave or experienced or soldier or fighter.

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

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

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

Goings on

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

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

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

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

Too School for Cool

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

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

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

My OSWD accommodations include:

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

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

So what is a warrior? 

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

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

 

 

A Trip to the Neurologist

image description- Oh I'm fine, just faking a migraine so I can get some botox in my face
[image description- Oh I’m fine, just faking a migraine so I can get some botox in my face]
Today I went to the neurologist for my migraines which have been worsening over the past year and a half.  I’ve been in and out of doctor’s offices for my migraines for over a decade now. I’ve tried over a dozen migraine medications, neurologists, ENTS for vertigo and so on. 

But recently everything has been much worse. I have migraines with aura. That is flashing lights in eyes and increased light sensitivity. But now it’s even worse, I have to close my eyes when lights are turned on and off in a room because lights start flashing in my eyes otherwise. It’s frustrating. And recently, any sudden darkness has caused flashing lights in my eyes, like driving under bridges…which as you can imagine can be dangerous. 

So I finally got in to see a new neurologist. I was anxious to meet him because my primary doctor of 11 years warned me he might scare easily and I can be pretty overwhelming with all my health issues. But he immediately was friendly with me and interested in all of my health issues, not just my migraines and vertigo. 

I can’t even express how important it is for chronically ill people to be able to trust their doctors and for the doctors to be able to look at us as a whole person and not just as the one body part that is their specialty. When I was first diagnosed with interstitial cystitis, my urologist that I was seeing basically looked at me like a giant walking-talking bladder. She never looked at other parts of me and how it impacted my health. I hated that and it made me stop going to see her. 

But looking at a chronically ill person a whole being, in a medical and holistic way, is beautiful in its own way. Most chronically ill people will tell you it’s hard to find a doctor like that…but when you find someone like that, you hold on to them for as long as possible. 

So today, this neurologist, looked at each of my illnesses and medicines and how they impacted my migraines. I was impressed with his thoroughness. He seemed to really want to help me. He didn’t rush through the initial exam. I hate when doctors do that. There’s nothing worse than feeling like a second or third priority to a doctor. 

We made a plan for my migraines…a big plan. A migraine plan. 

  • Get an MRI (I did have an MRI about 10 years ago but it showed nothing)
  • Get an EEG (Which is like an EKG  but for the brain, so it detects electrical activity in the brain)
  • Go to the ophthalmologist to check for papilledema (which is when there is increased pressure in or around the brain which causes part of the optic nerve inside the eye to swell…this can cause visual disturbances and headaches)
  • Wean off of migraine abortive medications (Sumatriptan and Fioricet)
  • Start Botox for migraine prevention. 

This is a big migraine plan, to say the least, there’s a lot that is going to be happening along side of my surgery in July. But sometimes that is just how it goes…when it rains it pours. 

Botox for migraines 

Some people may not be familiar with botox for migraines. Let me assure you, I am not making this up. This is quite a real thing. https://www.botoxchronicmigraine.com/ is a great place to start getting information about it. But I can give some basic information about it here.

Fast facts about Botox

  • Botox was approved by the FDA in 2010 to be used for chronic migraines. 
  • Botox for migraines is for prevention for people who have at least 8-9 migraine days a month. I have migraines daily if you were wondering. 
  • The botox injections are done with a small needle, that feels like a pinprick, that are done all around the front, sides of the head and back of the head. 
  • Injections are given every 12 weeks by a botox specialist, who is a doctor, that is specially trained to give the botox shots. 
  • About half of Botox annual sales are from migraine and other non-cosmetic uses. 

So as you can see Botox for migraines is a big thing in the Migraine Community. It’s something I have read about often since it has been approved by the FDA and I always read stories about how great it works for people with really bad chronic migraines, such as myself. Although I did not always have daily migraines, I do now and have for quite some time. I think it will be an interesting treatment to try out and something different that will, hopefully, break me free from my chronic daily migraines. 

Where do we go from here?

Who the heck knows! I have a lot of stuff to do over the summer related to my health before the Fall semester begins at the end of August. A lot of doctors appointments, tests, and surgery. So I can only just go day by day down this chronic road I’m on and hope that with each step I take things will get better. I have heard a lot of good things about Botox for migraines so I am looking forward to trying something different. 

Having multiple chronic illnesses is difficult and it’s important to have a support system in place. Friends, family, therapists who can support you through times like this…that I am going through now where basically my full-time job is my health. I have a lot of doctors appointments coming up that I don’t feel comfortable driving home from (like the EEG, the Botox injections and obviously my surgery), so, fortunately, my friend Shelby will drive me or my Boyfriend, Aaron. But that’s why it’s important for those of us with chronic illnesses to have support systems in place as such so that we have a friend or family member to turn to when there’s an appointment coming up and we need a ride. 

But overall, my end goal here in relation to this post is to decrease the number of migraines I have monthly. And if that means sticking a bunch of needles in my head every few months… I’m willing to try it. That’s just where I’m at right now in life. Needles in my head sound better than daily migraines. Let’s do this! 

image description-The only time taking a hammer to your own skull seems like an appropriate solution.png
[image description-The only time taking a hammer to your own skull seems like an appropriate solution]
 

 

 

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!
IMG_4483.JPG
[Image Description; Aaron dressed up as Scarecrow standing in front of a fenced in fake cornfield with his arms up and awkward to make it look like he is hung up on a pole]
IMG_4485.jpg
[Image description: Reid smiling big and posing as the Tin Man with a hand on his hip and the other hand holding an ax that is placed in a tree stump that is part of the Land of Oz set up.]
IMG_4492.JPG
[Image description: Reid dressed as Tin Man walking down the yellow brick road. As the viewer, we only see him from behind as he starts his journey to the Emerald City]
IMG_4564 2.jpg
[Image description: From left to right Rachel dressed up as Dorothy holding the real Dorothy’s Basket and smiling big standing next to Dorothy, both of them are wearing blue and white gingham dresses. Aaron on the other side of Dorothy dressed as the Scarecrow with sunglasses on (unfortunately) and in front is Reid smiling as the Tin Man with his ax and heart] Sunglasses??!?! Come on Scarecrow! Otherwise this is such an awesome pic! Dorothy let me hold her basket!!! #nerdalert
IMG_4568 2.jpg
[Image description: My Two Dorothys! Rachel dressed as Dorothy smiling with Dorothy, also smiling, both wearing blue and white gingham dresses. Both Rachel and Dorothy have similar color auburn red hair.]   Is it just me or do we have like the same color hair? I realize that was not her real hair, it was a wig but just sayin! This is my real hair and omg!
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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. 

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…..
 

 

Strep-Gate 2018 Part two

Image description- Strep throat! Ain't nobody got time for that!
[Image description- Strep throat! Ain’t nobody got time for that!]

This blog post is a continuation of Strep-Gate 2018 Part One. Please be sure to read that before reading this one to get the full story. 

Heads up- sorry this is a bit long… it was short … until it wasn’t anymore. It has a fun surprise ending that just happened and you’ll see what I mean when you get to the end. So …yay! 

Part two

When we last left off, Ruth was putting her thinking cap on to figure out the best way to help me through this situation. She didn’t want to just throw more antibiotics at this without knowing what she was dealing with…a fair assessment, I might add. While Ruth does actually have a local DC office, most of our appointments are by phone and she sends me kits for testing samples (i.e. urine kits and now a throat swab). So she sent me a throat swab which meant I had to stop taking antibiotics for at least three days to do the swab. 

House would have guessed what happened next correctly but we aren’t House so this is what happened next

What happened next, was not what any of us would have thought would happen next. The throat culture came back and you know what? That Strep Group B I kept talking about recently? It was gone. *dun dun dun* The strep was gone but the pain was worse than ever. 

I had E Coli populating my throat. The very same E Coli that has been ever present in my bladder and kidneys since I have been going to see Ruth. So Ruth theorized that E Coli made a home in my throat first and then layered itself off to make a comfy home and then Strep Group B moved in as it’s close neighbor. My immune system is super compromised as it is from E Coli, IC and months upon months of antibiotics. So it made it easy for the Strep to find it’s way, much like the E Coli from my intestinal/genital area up to my throat one way or another- when most other people have an immune system that would protect them from a disaster. 

Along with the E Coli, I had another bacteria which ended up being a type of yeast infection. Ruth wanted to make sure to hit them both. So she said she wanted to be sure to prescribe two antibiotics and some kind of oral medication that would get it right to where it needs to be…which makes sense. She said she wanted to talk to a pharmacist friend of hers who works at a compounding pharmacy. 

E Coli in the house!!

So now that Ruth knew what we were dealing with she prescribed me two antibiotics and an oral trope to fight off that yeast infection. Because like I was saying…oh yea my body had a massive yeast infection. But we shouldn’t be surprised on that one, should we? It wasn’t just my throat… my whole body was basically overcome with a yeast infection, but the oral trope, which was made at the compounding pharmacy especially for me...so special… was meant to kick the yeast infection in my throat. *pow* And I switched from regular probiotics to ultra-biotics which is a prebiotic and probiotic combo which really helped get rid of the massive body yeast infection. 

Meanwhile, the E Coli was just running rampant…Weee! But in a much less fun way.

When it rains it pours for people with chronic illnesses. Sometimes when we think it’s over it just gets worse… and then even worse. And each chronic illness impacts every other chronic illness. That’s just how it is and we never know what will happen to our bodies next. Each day is like a not so fun guessing game…which chronic illness will be messing with me today? …My migraines? My IC? My pelvic floor dysfunction? My asthma? My bronchitis? Or will there be some other new illness to partake in?

So…Where do we go from here?

Nine rounds of antibiotics later, Ruth said maybe I should try a different ENT, so I did. Just a couple days ago. I went to one of the best ENTs in Washington DC, possibly on the East coast. And here’s where we landed…

Tonsils need to be removed. 

That’s right, ya’ll. Tonsils… need to get gone. So buh-bye. Honestly, I’m not sure how this didn’t happen much earlier in my life since I have a sordid history with strep throat. But this is where we are at. There was a brief moment where the doctor was like usually people come in with both tonsils infected and need to have them both removed…but you only have issues with one. 

Firstly, to that I say…welcome to my life, Doc! When I do things…I do them on my terms! I don’t do them like everyone else. I’m a special snowflake when it comes to my health because I never present my health symptoms like other people. So, of course, it’s just one of my tonsils and I was like … NO NO take them both. I will NOT be having this happen again somewhere down the line. 

But Rachel Bob, when’s the surgery???

Oh yeah, good question. Thanks for asking. I haven’t officially scheduled a surgery date as of this blog post. I will be sure to keep you updated on that though, I can tell you it will take place at Georgetown Hospital in Washington DC, which is a really nice hospital so yay for me…I guess. We have some family trips we need to work around and something else came up just yesterday that I have to get under control before I can have surgery. Can you guess what it is?!?!

If you guessed a new chronic illness to partake in…then you guessed correctly, my friend! Because when I do things…I like to go big or go home…honestly I prefer to go home. But I guess sometimes I go big AND go home where I curl up in a ball from being in so much chronic pain and exhaustion and I just cry. Because that’s something people do. 

The new chronic illness in town

I went to my primary care doctor last week for my yearly physical, which is kind of a joke because there is so much wrong with me that any time I see her it just becomes a litany of stuff to discuss. In this case, she ran the usual bloodwork that she runs every year. She called me yesterday to let me know that I have hypothyroidism which is an underactive thyroid…or as autocorrect likes to say underachieving thyroid…which isn’t wrong.  

This is considered a chronic illness because it has to be maintained and looked after as a chronic condition. It causes chronic fatigue and other crappy symptoms. My doctor prescribed me a medication called Levothroid which replaces or provides more thyroid hormone that is normally produced by the thyroid gland. 

But when my doctor called me she brought up how I am pretty unique in that I have been fairly asymptomatic, in that we never would have guessed I had an underactive thyroid. The main telltale symptoms are weight gain, hair loss, fatigue, lethargy and being cold. While I am often fatigued and cold, I always figured it was due to my IC and other chronic illnesses.

So now what?!?!

Good question! Now I have to get my thyroid under control before I can have any kind of surgery. So I need to be on my new thyroid medication for a minimum of 4-6 weeks before I can have my tonsils removed. Go me! And that’s where I am at as of right now…current day. Go team go! …me being the team …of course…

Here is where we wrap up Part two of Strep-Gate 2018. 

Have no fear though because all of this mess is to be continued…in a later installment called something like It’s not Strep-Gate It’s I’m overwhelmed with too much stuff-gate 2018 part three !!!!! 

Being chronically ill is like wishing you could have a new bike but instead of getting a new bike you get the plague ...over and over again.

Strep-Gate 2018 Part one

i-dont-know-who-gave-me-strep-throat-but-when-these-antibiotics-kick-in-i-will-find-you-and-i-will-k
[Image description- I don’t know who gave me strep throat but when these antibiotics kick in, I will find you and I will kill you. With a picture of Liam Neeson on a cell phone from the movie Taken]
September 2017: How it began

My throat started hurting pretty innocuously in September 2017. I didn’t take my stock in it because I was busy. I was eyeball deep taking four graduate classes and doing my internship at Voices for a Second Chance working with recently released citizens who were either released from the DC Jail or federal prisons around the country. Anyways… I was also focusing on my bladder health. Remember that time I had interstitial cystitis..oh right… that was now.

I literally just ignored my throat… probably not the best thing to do but that’s what happened. It wasn’t strep. I thought something was stuck in my throat, that’s what it felt like. you know that feeling when you’re eating popcorn and one of the little pieces goes to the back of your throat, back by the tonsils and just gets lodged back there? It felt like that…at first. There was this sharp pain in this one specific part of my throat that did not feel like strep. I know what strep feels like because I had strep so often growing up that it was basically ingrained in me that when my throat hurt it was strep…but not this time. 

This time I didn’t even mention it to anyone, because that’s how unimportant it was or how unimportant I thought it was at the time. And it went on like that for longer than I’d like to admit. When I went for a check-up with my GP, I mentioned my throat had been hurting. So she looked in there but saw nothing and did a throat culture, the first one came back negative but the 3-day culture came back as Strep Group B (make note of this because this is important) Normally, Strep Throat is Type A, that’s the contagious kind. But I had basically had this sore throat for months… and nobody else had it. So my doctor prescribed me a 10 day supply of antibiotics and I seemed to be getting better. Until I wasn’t.

When the 10-day supply was gone the sore throat came right back and unfortunately, it happened on a Friday night and that infection came back with the full force of a thousand burning suns. So I went to Patient First Urgent Care, took my empty antibiotics bottle with me and got a strep test there. Luckily they were nice enough to give me another 10-day supply of antibiotics. And thus began what is now known as Strep-gate 2018. 

That time I saw the worse ENT that ever existed

After I went to get my second round of antibiotics at urgent care, my GP referred me to an Ear, Nose & Throat Doctor (ENT). I was glad to go, honestly, because I need to get this taken care of. Before I went I wrote down all the basics of what had happened and when I started taking antibiotics and which antibiotics, I do that sometimes for myself so I don’t forget…it ended up being for the doctor though… 

When I walk shown into his room I felt like I was walking into a time warp. I had just walked into an ENT’s office from the 50’s. No joke the room, the chair, the tools were from the 1950s…I wish I had taken a picture. The chair was almost too small for me and I am not a big person…I’m 5’6” and I had to slouch down to put my head on the headrest. Wtf? People were shorter back then… I guess. All his tools were metal. Like the little scope the doctor uses to look in your ear how that’s usually like a hard black plastic… yea… his was metal.

He walks in old as the wind and he is deaf af. And I don’t say this lightly because I live in the Deaf community. My boyfriend, Aaron, is actually Deaf. Our mode of communication is signing. I go to Gallaudet University, where everyone uses sign language. But this guy walks in starts talking to me and I respond in English and he CAN NOT hear me…AT ALL. So I speak louder. I have a lot of experience with hard of hearing people too so I know sometimes speaking louder can help…NOPE. 

Nothing…NOTHING I did could make this guy hear me. So I handed him my handwritten note to myself that said everything…. when I started antibiotics/what antibiotics. It was SO terrible. He barely looked in my throat. He said oh you look fine. I’M NOT FINE!!!! wow…so frustrating.  He prescribed me some more antibiotics for another 10 days. This time he gave me some antibiotics I never heard of and they ended up being so strong, I took one pill…ONE PILL…and became violently ill. And if we had been able to have a conversation I could have told him that I am extremely sensitive to medications and I would not be able to tolerate that kind of antibiotic. 

I will say this by saying this…this doctor might have been a great doctor at one point in his life. But at this point, he is at least 80 years old and should no longer be practicing. He was negligent and in my mind had no clue what he was doing. He barely looked at me. He didn’t have up to date equipment so there is no way he could have properly looked into my throat. Looking back it’s a humorous situation but at the same time, it’s worrisome that he is allowed to still practice. 

And now…this awkward moment

So here’s where things get awkward. I hadn’t even mentioned my sore throat to anyone (except my friend Shelby but I didn’t even tell her until it was almost time for me to go to the doctor), not even my boyfriend, Aaron. So when I came home and told him that I had this strep throat situation going on and that my throat had actually been hurting for months… needless to say he was baffled and rightly so.

How many of us chronically ill people don’t mention a new symptom or ailment to close friends and family because we don’t want to worry them? Honestly, I thought it was nothing for quite some time, so I didn’t equate my throat hurting with my chronic illnesses and therefore, in my mind, there was nothing to tell. But I learned a valuable lesson in this situation… there’s always something to tell, even if it seems like nothing.

Strep-Gate 2018 Begins

So just to back up for a second here, unless you read my previous blog post like a minute ago, you might not remember this, but up until this point I had already been on antibiotics for about 7 months for various other reasons such as UTIs, bladder/kidney infections, and bronchitis. So yay being on even more antibiotics! 

So by now, I was now on my second round of antibiotics for my Strep Throat Group B. And I was miffed. I realized my strep wasn’t contagious and I needed to slow down a minute and research this. Let’s look into this a bit deeper, shall we?

The Mayo Clinic says that “Group B strep is a common bacteria often carried in your intestines or lower genital tract and that it’s usually harmless in adults.” Oh okay, so that makes complete and utter nonsense! 

What in the actual hell? Okay so Strep Group B is a type of strep that is noncontagious except between mother and newborn baby, but somehow it probably went from my lady parts to my throat. There are two possible ways that could have happened. 1. Through sexual intercourse. 2. My body’s immune system is so jacked that an infection such as that decided it wasn’t happy in just one place warm comfy place and wanted a new warm comfy hidey hole of a place to cozy up. Personally, I think it was the second one because of what happens soon after this with all my dear longtime friend, E Coli, that will soon be making a reappearance.  

After I went to Patient First, I called up Ruth Kriz, my IC specialist extraordinaire. I have been working with Ruth for about a year now on my IC. She has a holistic and medical approach to the body which I appreciate greatly because I don’t believe my personal situation can improve with just medical interventions or just holistic interventions. I like Ruth’s approach. She is a nurse practitioner who does in-depth cultures that most doctors don’t do. So while my (hack of a) urologist does the most basic urine culture to test for a UTI, Ruth sends off my sample to a lab that does a urine broth culture that really looks at the sample deeply and does three different levels of testings, instead of just one. And normally throats are not exactly her forte but I called her up and told her what was happening.

She literally said to me, “I hear what you are saying but I don’t know how you think I can help you, darling, I don’t specialize in throats or strep throat.” I laughed and I said, Ruth, please hear me out, you are the only person who can help me. The strep test results that I got back said I have Strep Group B, which is usually only found in the vagina! Which is why I haven’t been spreading this strep around town. She immediately got what I was saying, how in the heck did this strep that belonged in my lady parts get into my throat?!

She put her thinking cap on. And let me tell you friends, there is nothing better than knowing you have a doctor or practitioner is on your side. Ruth is that person for me. She is always on my side right there believing me when I tell her my symptoms.

Chronically ill people so often get brushed off, not believed and not heard. I’ve had that happen to me with my urologist who (unfortunately) specializes in IC. My urologist was a woman as well…Women who are stereotypically more caring and empathetic…she …was not. In a profession that is still heavily dominated by men, it can be incredibly hard to find a urologist that really listens to you. So when you find a female urologist that specializes in your chronic illness you kind of think *jackpot*!!! Except, in this case, it was more like … jack..not…womp womp. 

I’m going to end Strep Gate 2018 here. But have no fear there is a Part two! So be on the lookout for that next week.