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.

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Hey antibiotics, good to see you again!

 

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

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

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

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

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

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

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

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

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

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

Anyways, I’ll leave it here for now. 

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

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

 

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

That Feeling of Indescribable Disconnect

courage-is-not-having-the-strength-to-go-on-it-is-going-on-when-you-dont-have-the-strength
Image- “Acceptance doesn’t mean resignation. It means understanding that something is what it is and there’s got to be a way through it” -Michael J. Fox

I am elbow deep into my second semester of graduate school. Wow. It’s exhausting. My three classes are going well so far. I am taking Quantitative Research, Human Behavior in the Social Environment II (HBSE) and Forensic Social Work (FSW) at George Mason University. The FSW class at George Mason University (GMU) is particularly interesting. I don’t love my class schedule. Well… my Quantitative Research class is online which is great because I don’t even have to leave my pajamas for that.

Being chronically ill and going to grad school is a challenge. When I go to class, I have to make sure I bring everything with me that I need. First, there are the obvious school items like pens/pencils, notebook/paper, MacBook, day planner. And then for me, there are items like my alkaline water bottle, a cushion for me to sit on, sunglasses, migraine glasses, my regular glasses in case I need to take my contacts off, my medicine bag (which is just what it sounds like…it’s a make up bag filled with all the meds I take daily) and my Keto IC food in my polka-dotted lunch box. It always feels like I am taking a long trip when in reality I am just going to one class.

I was recently invited to join MuPi, the Master of Social Work chapter of the Phi Alpha Honor Society. The minimum GPA requirement is a 3.8, so luckily I got that 3.9. Well, we shall see how I fare this semester but I suspect it will turn out with similar results. I’m still a smidge bitter about that 3.9 but this too shall pass lolI can’t really be too upset about it because last semester my health was really bad off and I was in so much pain….really I’m lucky I made it through at all. 

Mu Pi, or Moo Pie as I like to call it, holds weekly meetings and I haven’t been able to attend any of them because they are at the same time as my physical therapy appointment. I changed my PT appointments for the month of March though so that I will be able to attend the Mu Pi meetings because I do actually want to be involved.

 

image-rachel-smiling-and-holding-up-certificate-from-phi-alpha-honor-society
Image: Rachel looking tired but smiling and holding up a certificate from MuPi

I recently had my request for accommodations through the Office for Students with Disabilities approved, which is bittersweet. My accommodations are: extensions on assignments, taking frequent breaks during class (for bathroom or pain), being able to leave class early or not come to class (with professor’s permission, of course). I hope I will never have to use any of these accommodations…but in a way, it’s nice to know that they are there as a backup in case I need them.

I am really struggling with all of this though. I know I am taking care of myself first and foremost. Self-care is my priority. But I have had to give up my life as I knew it in order to do this. And now I feel disconnected from all my classmates. It’s very hard. I only have one face to face class at Gallaudet with my actual cohort and it’s not enough time to spend with them, like last semester where I had three classes on campus with my cohort. And I haven’t been able to go to the Mu Pi meetings because of PT. My other class at GMU is with a whole other group of people who I don’t even know so obviously I’m not connected to them at all. I am literally an outsider in this cohort who has been together for almost two years. I feel disconnected.

Not to mention I miss the DeafBlind community so badly. The other day I saw a group of them chatting at Gallaudet. I wanted to go say hi but I had just finished my PT exercises and therapy. So I was physically and emotionally exhausted and in the pain…my body couldn’t handle it. And really I couldn’t handle it emotionally either. I would have become incredibly emotional and started crying because I miss them all so much.

I just feel this indescribable disconnect this semester.

I have given up so much. And I am really starting to feel my losses. I try hard to keep busy and since I have been so sick recently I have been distracted with that. But it doesn’t matter because at the end of the day I still feel lost and disconnected from people.

I am trying so hard to keep going and not let it get me down. I keep reminding myself I am doing what is best for my health. I can’t push myself too much or I will lose any progress I have made- healthwise. And I have made some…I have less inflammation in my body which is great. And I have short periods of time where I have less pain.

When people with chronic illness(es) commit themselves to self-care and improving their health, it is absolutely the right decision… but it is not easy. To some people, it might seem self-involved or selfish because all we do is think about ourselves and how things will impact our health. But it’s not selfish. We just want to be better…be healthy. I want to be the person I was so that I can do the things I used to do. I know if I just stop caring for myself now and try to go back and start working again I will hurt myself very badly.

Having chronic illness(es) is never easy. And when you start to feel disconnected from everyone around you… it’s all too easy to become depressed and isolated. I am fortunate to have my support system to back me up and be here for me when I need them most. But even having a support system doesn’t prevent the feelings of disconnect. This is something I will just have to process and go through. There is no fix it for this feeling. I can try to be more involved in some ways but I need to find the right balance. I am concerned about undoing all the progress I have made.

I am learning to accept my life for what it is right now. It is a struggle but I’ll get there eventually and I am sure by the time I get there it will change and I will have to start learning to accept it all over again. But that’s life…beautiful messy heartbreaking inspiring life.