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]

 

 

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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. 

 

 

On the road…to getting lost

 

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

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

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

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

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

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

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

 

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

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.