About Me

Brushing Your Teeth is Easy, Right? Hang on a minute.

This article was inspired by this prompt from the TheMighty.com

There is one task we are should do in the morning after we eat breakfast and again in the evening before we go to sleep. It is a simple task and its importance is instilled in us from a young age. Can you guess it? It’s brushing your teeth!

While it is very easy, often mundane task for most, it can be challenging for those with chronic conditions. Two of my chronic conditions make brushing my teeth effectively very painful. The first is Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS) and the second, and probably more challenging of my many conditions when it comes to brushing my teeth is Stiff Person Syndrome (SPS).

I know that I have to brush my teeth. Not only is it important to maintain oral hygiene, but who really wants to smell my morning breath? Eww. There are other tools like mouthwash and other oral cleansing products, but nothing beats a good scrub with a toothbrush.

Because of the RSD/CRPS, which affects everywhere there’s a nerve, my hands swell up and as luck would have it, it’s worse in the morning and at night. I use a toothbrush with a thicker handle to combat this problem. Because of the RSD/CRPS, my tongue, gums, and teeth are very sensitive, so for my teeth, I use a toothpaste for sensitive teeth. I haven’t found a good solution to my gums swelling from the CRPS or the bloody patches on my tongue. The dentist says as far as he’s considered, there’s no infection and people with CRPS can have issues with their mouths as a result of the condition.

Because I’m stubborn and fiercely independent, I wouldn’t dream of asking someone else to help me brush my teeth (except when I’m in the hospital) and the SPS makes physically brushing my teeth challenging. Holding my arm up, moving my wrist around, the repetitive back and forth movement of my wrist, elbow, and shoulder triggers painful spasms causing ineffective brushing. Now, it took me a few months to find one that worked for me, but I found a rechargeable vibrating toothbrush that has cut back on the number of spasms and the time I spend fighting with my muscles to ensure I’m getting each little spot. The soft bristles are perfect for my sensitive mouth from CRPS and give my mouth the TLC it needs to stay healthy. The strength of the vibration is important too, because it can occasionally trigger spasms, so it may take a few tries to get a good fit.

It’s a fine balance to maintain my oral hygiene with not only these conditions, but with my many others as well. Like most people with chronic conditions, I’m always on the lookout for tools that can help make my daily routine more “spoonie” friendly! Sometimes it takes trial, error, frustration, and perseverance to find the good fit for you.

Stuck Somewhere Between Completely Exhausted by Life and Very Blessed

The last two weeks have been hard. From dealing with an ADA Violation to getting a message from my physical medicine doctor’s PA saying I really needed to see a neurosurgeon about my EDS affecting my cervical spine to making Dean’s List, seeing a wonderful new doctor to being elected President of Pitt’s newly reactivated Chapter of Delta Alpha Pi International Honor Society for Students with Disabilities and seeing how proud my family was, I’m stuck somewhere between “Dear Lord, would you like to throw anything else at me right now?”, “Thank you for blessing me with the gift of trials to teach me how grow”, and appreciating all the blessings of the last couple of weeks. I’m conflicted, but let’s see what my devotional says today…

HPV and Cervical Cancer: January is Cervical Cancer Awareness Month

January is a tough month for me and it’s mostly because everyday is a constant reminder that something that should have kept me healthy and safe made me very sick. I’ve been on the brink of death several times since I received my first and only shot of the Gardasil HPV Vaccine. They come in series of three and had I received the rest of the shots, I honestly think I’d be dead.

Hundreds of thousands, if not millions of girls and boys around the world, have been injured by the HPV vaccine and I am one of them. People considering Gardasil and the other form of vaccine Cervarix, were told that that they were the “safest vaccines ever made” when Gardasil went on the market in 2006. They would protect against 4 strains of HPV (but the validity of this claim is still very questionable). Gardasil-9 more recently released protects against 9 strains but contains double the amount of aluminum and polysorbate 80 (both trigger an immune response) as the original vaccine. Most of these quick facts below are accurate, however it has not been proven that HPV causes cervical cancer, thus defeating the point of the vaccine. In fact, some scientists say it may actually increase the risk of developing cervical cancer.

Little graphics like the ones below are not only not completely true, but they are frequently shared on social media.

I believe that for myself (and probably some others too), something genetically predisposes us to vaccine injury more than others, which would explain why some people get the vaccines without issue and some have major life-altering conditions or die as a result. The problem is, we don’t know what because proper testing and clinical trials haven’t been done, so how can we even know who will be injured and who won’t? It’s a gamble of ones’ life potentially.

In the original Gardasil clinical trial by the FDA, both the control group and the experimental group received the aluminum and polysorbate 80, which we believe is causing these problems. Since the placebo contained the same parts of the vaccine that we believe are sickening girls and boys around the world, both groups experienced the same symptoms, but because the control group was having the same symptoms, it was deemed “safe” and expedited to the market.

I can only speak for myself, but until we know what is sickening some people and not others, I believe that the vaccine should be taken off the market until further proper testing can take place. In fact, some countries like Japan have banned it completely after recognizing the dangers.

I don’t know about you, but I’d rather go against a cancer with an 80% rate and preventable with regular pap smears, than deal with all the effects of that shot on my body causing numerous chronic and incurable conditions.

For more information on the dangers of the HPV vaccine, please visit:

Sacrificial Virgins: Part I Not for the Greater Good

Sacrificial Virgins: Part II Pain and Suffering

Sacrificial Virgins: Part III A Penny for Your Pain

HPV Vaccination Under Scrutiny in Iceland

Please do good, thorough, independent research before deciding if you are willing to take the risk. It is not a decision that has to be made immediately in a doctor’s office.

January is Thyroid Disease Awareness Month!

It’s the end of the month, but I had to write up a little something about thyroid disease. January is Thyroid Disease Awareness Month. I’ve had the lab results indicative of Hashimoto’s Thyroiditis (autoimmune thyroid disease) since at least November of 2015, but I had symptoms as early as 2012 with the elevated antibodies.

However, my TSH (thyroid function tests) have always been normal, so no one diagnosed me until November 2017. Because my TSH is still normal, I can be proactive in preventing it from going hypothyroid (underactive) by taking supplements and avoiding soy and gluten. It can take as long as 10 years for a person to see a drop in their thyroid function, after the development of the antibodies. There are a number of other thyroid disorders, but these are the two I’m most knowledgeable about.

Symptoms can include:

-Anxiety

-Depression

-Poor Memory/Concentration

-Weight gain or loss

-Tremors

-Feeling cold

-Heat Intolerance

-Fatigue

-Feeling bloated

-High cholesterol levels

-Tachycardia/Palpitations

-Aches and Pains

There are dozens of other symptoms, but these are just a few of the most common.

Feel free to ask questions in the comments below!

My Upcoming Research and how YOU can raise awareness for rare diseases

I feel like one of my posts earlier today might have been confusing. Earlier in 2017, around late August, I emailed Dr. Machado, widely considered to be very informed on SPS. It was regarding SPS research that I personally will be conducting and I was hoping for his professional insight. I’m doing SPS-specific research at my university on a subject that has never been studied in formal previous papers to my knowledge. Parts of it have, but never as a whole, so it’s some newer stuff.

What I am allowed to say about the research publicly is a bit limited at the moment because of university review stuff, but coming in the next month or so, watch this group for the official information when I am allowed to say more officially.

What I will say: This is beast sucks. I get it. Complications have nearly taken me out on an almost regular basis. But I need your help. We need your help. Write a blog about life with SPS. Make a post on Facebook and let people share it. Start a YouTube channel or Instagram to show life with the condition. These are all free, but reasonably easy options to raise awareness quickly.

If you do make an SPS awareness Instagram, add me @megsmiracles

If you make an SPS awareness YouTube channel, subscribe to my channel- Meghan Bayer and I’ll subscribe back.

If everyone does one small thing, the amount of awareness will skyrocket!

Someone I miss is in Heaven

I’m not always allowed to talk about you to certain people, but I miss you more than words can say. No one really got to say good bye to you, but I’m one of the few that never got to hug your earthly body and let go because I was in the PICU when you died and you were cremated before I could be discharged. But I know the very moment you left earth, because for 30 seconds for the first time in years, nothing hurt and you always told me you’d take the pain.

I love you forever. I’ll like you for always. As long as I’m living, my one and only Nan you’ll be. 💗

You’ll never by off-limits to discussion by me as long as I live.

Driving, Medications, and SPS

So I found out this morning that I can’t drive with my medications, which would have been fine IF I had been told prior to starting my semester. So now someone has to drive me everywhere. Everyone else can’t keep up with my schedule and/or they complain about it. Everyone that has ever tried, failed after three days.

M, W, F- I have an internship (W and F I have to scramble out to work.)

Multiple doctor’s Appts/tests all over the week plus classes

Saturdays-Internship workshops

2018 Goals

In 2018,

1. No hospital stays, intubations, etc

2. -Since January 2013, I’ve spent over 60 weeks in the hospital just inpatient. 52 weeks in a year, do the math 😬

3. Return to my early November ‘17 physical fitness levels are I’ve lost a ton of physical muscle mass from complete bed rest.

4. Walk on my two FLAT feet

5. Stay on the Dean’s List and continue working toward my goal of graduating summa cum laude in Spring 2019. This will be a challenging semester, but I’m excited for it.

6. Continue taking advantage of every opportunity Pitt and the Red Cross give me to move up in the world.

7. Keep working toward that third degree black belt and a more confident instructor (I wouldn’t mind maybe earning another 4 state champ titles too.)

I refuse to call these resolutions, there’s no reason (except for medical stuff out of my control). I don’t have to be the most-skilled, quickest, smartest person on earth, but I better be the hardest working with the best attitude.

Christmas

What I really want for Christmas is for good health and a happy family. I was spending so much time trying to think of some of the necessities that I might need and could maybe ask for for Christmas. I realized everything I need and could ever want are things that money can’t buy. I am thankful that I get to spend Christmas at home after spending this past Thanksgiving in the ICU. I hope that in 2018 I will get to walk with flat feet and minimal spasms. My Christmas Miracle will come. Maybe not under the tree, but in God’s perfect timing, I know it will.

Health Update: December 19th, 2017

A couple of people have been asking about the plasmapheresis and life lately, so I thought I’d do a big update.

Plasmapheresis first. Today I had what I believe is Round 6 of PLEX and their were no complications besides some minor allergic reactions. I’m now on a once a week regimen down from twice a week, and since making the change, I was making small improvements with my toes and arms. The day after I would have gotten my next plasmapheresis (Last Friday), I completely regressed back to the spasms that were so severe they had me in the ICU over Thanksgiving. My doctor doesn’t believe that there is enough information to say that the flare and the reduction in PLEX are correlated. Heck of a coincidence then! 😑

This doc is so nice and actually listens really well usually, so I know he’s not trying to be a pain, but it puts me in a bind. Especially because he won’t be at my next treatment next week because he’s out of town. I’ll be calling my neurologist for insight and my local pain management doctor to schedule injections in my back muscles. We’ll continue to treat the anemia secondary to the treatment as well.

The 31 day cardiac event monitor is still going and going well. Thankfully, I was able to get a new charger overnighted to me as well as hypoallergenic electrodes. I’m hoping they work better for my allergic and sensitive skin. As an aside, the cardiac monitor makes a very effective projectile when I’m really into a taekwondo workout and it flies out of my dobok. 😂

My Dysautonomia/Orthostatic Hypotension continues to be uncontrolled and some of my odd CRPS symptoms I get from time to time have continued.

Life Update:

Super glad to be done with my semester. I’m officially a senior (finally!), a milestone I wasn’t sure I would pull off medically my freshman year. I’ll be moving back to good ol’ Ruskin Hall in January, which I’m extremely excited about.

I absolutely love my spring internship that I started earlier! It’s so closely aligned with my passions, it doesn’t even feel like work most of the day! One more internship day this year, two more days of work, then I get a complete break until 2018. Sleep here I come!