Lyme Disease · Medical

New Chapter in Lyme Treatment

“What is happening?”

“I’m being a superhero.”


“There is a scientific study that shows that if you stand like this, in superhero pose, for just five minutes before a job interview or a big presentation or a really hard task you will not only feel more confident, you will perform measurably better.”



“You feel it?”

“We’re superheros.”

“We are superheros.”



A character on Grey’s Anatomy, Amelia Shepherd, had the above conversation with her resident before a particularly difficult brain surgery. Later in the series, she strikes her “superhero pose” again before undergoing brain surgery herself. I’ve always really appreciated her character and the amount of battles she has clawed her way through. Fictional as she may be, I identify with her quite well.

Yesterday I entered the next battlefield in the fight against Lyme and all its buddies. For the past several months I’ve been on treatment for the Babesia infection that is one of the friends of Lyme that seems to be causing me the most trouble. For one reason or another each antibiotic I tried ended up not being well tolerated and with the progression of some other neurological symptoms, we decided it was time to start IV therapies.

On Wednesday mom and I headed to the hospital for my port surgery. A port is a device implanted under the skin connected to a catheter that runs to a large vein next to the heart that allows for long term IV access. They are most often used in oncology patients however they are quite useful for many other conditions. In my case, I will be using it every day, so it will be “accessed” 24/7. This means that I’ll have a needle in my chest covered with a dressing at all times with weekly needle changes.

Mom and I got back to the pre-op area and I got changed, checked in, and signed the consent forms while mom caught up with several of her former coworkers. It took three tries to get a peripheral IV started on me thanks to having tiny, rolling veins, Raynaud’s keeping my hands freezing cold, and not having been able to drink water before the procedure. The OR was running a little bit behind so it wasn’t until about 2:30 pm before I was taken back. My poor blue fingers were too cold to register an oxygen saturation so we tried my ear… which was also too cold. Finally we found a spot on an earlobe that would work. The struggles of being underweight and perpetually cold! The procedure took about an hour and I was sedated so all I remember is asking “is it normal to not be able to hear” and then waking up in recovery. Apparently Propofal messes with my ears.

For the procedure I had to turn off my neurostimulator – something I never do – and I got to see just how much it really helps me. The first thing I said when I woke up was, “Oh my gosh my head hurts so bad” and oh my goodness it did! The head pain was FAR worse than the pain of having had my chest cut open and dug around in. I’m so thankful to be battery operated!

After being moved to the discharge area mom came back to wait with me and while I shivered in my cocoon of five warm blankets (not an exaggeration), she listened to the reports of how everything went and discharge instructions. I was a little bit surprised that there was so little patient education about my port and how to use it until I remembered that my situation is pretty unique. Most people with ports don’t access them themselves, don’t have them accessed at all times, and don’t set up their own infusions at home. I’m very thankful that my mom is an RN who was dealt with ports for many years and is able to help me with all things medical. Lyme is very much a do-it-yourself disease because it is not well known in healthcare. In fact, not one single person who asked me why I was getting a port knew that Chronic Lyme existed and could cause such debilitating symptoms.

We got the all clear to head home and with the surgeon’s permission, mom accessed my port when we got back to my house and started my first antibiotic infusion. My dad also came by and we chatted while my meds were running and the pups had some play time. Everything with the infusion went smoothly and so once I was unhooked and flushed mom headed home and I headed for bed.

The plan for the foreseeable future is to to infuse two doses of antibiotics each day and three days of the week I will also run a liter of IV fluids to manage my POTS symptoms more effectively. Soon, I will also add in IV vitamin C and IV Glutathione to help with detoxing. I’ll also be taking other medications orally that have been well tolerated in the past that aren’t available IV.

This new protocol comes with many more risks of infection and keeping things sterile is very important because an infection could mean losing not only my port but also my stimulator – something I do NOT want to happen – but the pros outweighed the cons. There is much more logistically with IV therapy because I have to coordinate with a specialty pharmacy, have more frequent labs drawn, and have a lot to learn about new protocols. However it also comes with a lot more hope and confidence that one day I’ll make it into remission and reclaim my life!

This is the beginning of a new chapter for me. I never thought that I would have a battery implanted on one side of my chest, mirrored by a central line on the other side, but even though this isn’t where I thought I would be, I’m encouraged and hopeful for the future. I can look around and see more blessings in my life than I could possibly count. Though Lyme disease is part of my life, I’ve been given a family that supports me not only emotionally but has the knowledge to help me understand things medically as well with nursing, pharmacy, and EMT experience. I have friends who love and care about me and I have found a community full of helpful souls via social media.

So I’ll strike my superhero pose and enter this battle with my head and hopes high knowing that I am not alone. My opponent may be strong but I am stronger and I’ll keep trying for as long as it takes to take back this body of mine. These bugs won’t win.



Lyme Disease · Medical

Why Lyme Is Hard To Treat: Part One

Before being diagnosed with Chronic Lyme disease I’ll admit that I didn’t know much, if anything, about it. What little I did know was that it was a tick borne illness, often presents with joint pain, and a classic sign was a bull eye rash. I had no idea that those symptoms aren’t always present, that it was a difficult diagnosis to find, that it can affect every single system in your body, or that it was so controversial. Lyme disease is a tough thing to treat for several reasons. The most ridiculous hurdle for Lyme patients is politics. That is followed by poor diagnostic testing leading to prolonged, untreated infection. Medically, Borrelia, the spirochete bacteria that causes Lyme, is a very smart bug. It can hide in the body in three different forms, each of which are difficult to get rid of. Finally, Lyme doesn’t travel alone. Far more often than not, there are at least two co-infections that cause their own slew of problems and must be treated. The most common are Babesia, a protozoan parasite that is similar to Malaria, and Bartonella, a bacteria that lives in the lining of blood vessels.

The first hurdle to tackle in the Lyme fight is politics. There are two schools of thought when it comes to Chronic Lyme. The first is the belief held by the Infectious Disease Society of America, or IDSA, that Lyme exists only in acute form, is difficult to contract, and easy to treat. The guidelines they have set out, which the CDC supports, claim that long term treatment for the infection is not necessary and that a one month course of Doxycycline is curative. This gives insurance companies the power to refuse to cover treatment for late stage Lyme, leaving many patients with debilitating symptoms, no support, and financial ruin.

The other side of the argument is held by the International Lyme and Associated Diseases Society, which says that Lyme disease is very common and requires long term treatment once the infection has reached the chronic stage. This treatment can include long term antibiotics, malaria medications, herbal supplements, diet changes, and more. Because treating this disease is so complicated, it is often very expensive and insurance companies are under no obligation to cover treatments for a disease that the IDSA claims doesn’t exist.

These two warring mindsets have created a climate in which patients with these tick borne illnesses are told its “all in their head”, misdiagnosed, and mistreated by the medical community. I myself have been treated as a drug seeker, told that there was no way I had Lyme disease, and dismissed by countless doctors. It took four and a half years for me to find a diagnosis and my story is far from unique. Unfortunately, the longer the infection goes untreated, the more difficult it is to reach remission.

The very few doctors who are willing to take on Lyme patients do so at great personal risk. Should these Lyme literate doctors, or LLMDs, submit claims to insurance companies, they could be sued for insurance fraud or even lose their medical license for misconduct. Because of this, the cost for treatment is almost entirely out of pocket. The most accurate testing is done at a lab in California called Igenex and those tests alone are over $1,000. LLMDs are also very few and far between. In the state of Indiana there are three specialists and I have met with two of them. The first was so unprofessional I’m not sure how he still has a practice. Another has so many patients that they aren’t able to accept new patients. The third had a three month waiting list.

The funding for Lyme disease research is minuscule in comparison to funding for ailments like Zika virus. According to the CDC website, Zika can cause a fever, rash, headache, and various other fairly mild symptoms. It is rare, usually lasts less than a week and is very rarely fatal. There were 345 cases reported last year. The noteworthy aspect of Zika is that it causes severe birth defects if a woman is infected during pregnancy. In 2016, congress allocated $1.1 billion for research. In comparison,, the CDC reports that Lyme disease the the fastest growing infectious disease with an estimated 300,000 NEW cases per year. Currently the standard test for Lyme is the enzyme-linked immunosorbent assay, or ELISA. This test was developed in 1971 and has been relied on ever since. However, this test is wildly inaccurate and is not diagnostic. Although Lyme disease has been known to cause symptoms ranging from joint pain to seizures, paralysis, and potentially death, the NIH was granted just $28 million for research in 2016.

If we want a change in legislation regarding Lyme, it is up to us to demand it. The experts on the panels that make these decisions should not have a financial stake in their recommendations. Testing needs to be updated and more effective. Just like we once believed that ulcers were caused by stress and not H. Pylori bacteria, I believe that one day we will find the mechanism behind this awful bug and wonder why it took so long to get there. As much noise as the Lyme community is making on its own, things won’t change until the healthy are as outraged as the sick.



Doctor Searching is Never Simple

If you don’t get sick very often, you probably don’t realize just how important it is to have a good doctor. In my case, I know exactly how important that is because I am living with chronic health problems and whoever is treating me pretty much has my quality of life in their hands. Specialists are just that – specialized physicians treating one body part or system. Having a primary care doctor keeping an eye on the body as a whole isn’t something optional.

Earlier this year my primary care physician (PCP) retired after having been my doctor since birth. That sent me off on the hunt for a new PCP and while that doesn’t sound like such a difficult thing, its been quite the challenge. There are a lot of factors that make this hard ranging from anxiety and fear of not being believed to just finding a doctor accepting new patients.

I managed to find a primary I was happy with and felt confident in. Unfortunately, the doctor was the only thing about that practice I was happy with. The hours they kept were very short, the phone line was always busy and had no voicemail option, the office staff lost paperwork on a regular basis and were very slow to get anything done, and the wait time in the office was never under an hour at the very least. When you have a chronic condition that changes without warning, you have to be able to contact your doctor easily. Some symptoms have to be dealt with promptly and not being able to even leave a message for days at a time can be a setback you can’t afford.

Another factor that complicates things in the chronic vs. acute illness category is finding a knowledgeable doctor. I have a few conditions that are not seen very often and others that are not well understood. POTS and NDPH are not conditions many PCPs have seen before and so they don’t really understand how to treat them. Chronic Lyme, Babesia, Bartonella, and Epstein Barr virus are tricky for specialists to treat, let alone someone who hasn’t studied them. The physician treating me can be the difference between getting to live my life and being nonfunctional.

In the four and a half years it took me to be diagnosed I saw quite a few doctors. Some of them completely dismissed me, others gave up, some treated me like an addict, and many would only treat what they were familiar with rather than do the research to learn how to treat what I was actually dealing with. Because of the years spent like this, going to a new doctor always creates a lot of anxiety.

Lets face it, a lot of MDs have an ego larger than the student debt that put them through medical school. As of now, Chronic Lyme is the fastest spreading infectious disease in the country and one of the most stigmatized illnesses out there. The CDC argues that it doesn’t exist, testing is criminally outdated and unreliable, and doctors brave enough to care for Lymies are putting their medical license at risk. If they file claims with insurance companies, they are opening themselves up to lawsuits accusing fraud. When it comes to problems like POTS, even though the testing is clear, its not a very common diagnosis and many PCPs don’t have the slightest bit of training to deal with it. Less than adequate care can mean that my daily life is much more of a struggle than it has to be.

After all of the above hurdles are cleared and I find a PCP I trust, can communicate well with, and is willing to work with specialists, they must be accepting new patients. The last several doctors I have looked in to have either been not taking on new cases or have had a waiting period of months for an appointment. The latest MD recommended to me requires a medical history before deciding if he will accept my case or not. With such complicated health, I would be shocked if he did agree to take me on.

Its never a simple task to find the right doctor when you have an atypical medical life. It requires a lot of patience, a lot of research, and a lot of time. However, when you find the right fit, the whole struggle is worth it.

Medical · Uncategorized

A Diagnosis!!!

“We would know if you had Lyme disease.”

“Well do you have a skin rash?”

“Chronic Lyme is something doctors say to take advantage of their patients.”

“If you had Lyme, you would have the antibodies and would be able to tell from your white count.”

These are all comments I’ve been met with when I’ve asked about Chronic Lyme Disease to doctors I’ve seen in the past. A couple of years ago my primary care doctor ran an ELISA test to appease me and lo and behold, it was negative. This isn’t too surprising as that test is known to be very inaccurate and misses about 60% of Lyme cases.

Over the years I’ve been given several disjointed diagnoses for the symptoms that have cropped up all over my body. The constant headache was NDPH, the low blood pressure, chest pain, heart palpitations, PVCs, and pre-syncope was POTS, the weight loss and nausea was labeled idiopathic when all of my test came back clean, the blue fingers and toes were idiopathic Raynaud’s disease, the debilitating fatigue was Chronic Fatigue Syndrome… None of these things were tied together though and there was never an underlying cause found. While the diagnoses themselves are probably accurate, I couldn’t accept that they all just happened out of the blue with no connection. So the research continued.

I had come across Chronic Lyme in the past but because it is so difficult to get properly diagnosed, I decided to knock out the easier possibilities that insurance would cover first. I was treated aggressively for NDPH (the most debilitating of all of my issues) but despite six hospital admissions, countless drugs, and a neurostimulator implant, I am still not well enough to return to working. You see, the CDC does not admit that Chronic Lyme is a real disease. They use the term “Post Treatment Lyme Disease Syndrome” and argue that 2-4 weeks of antibiotics is curative of Lyme and that sometimes the symptoms just persist but there is nothing to do about it. This means that insurance companies do not have to approve any Chronic Lyme treatment, making this a very expensive disease to manage because so much of it is out of pocket. This is also why there are so few physicians who will treat it. There are only three Lyme specialists in the state of Indiana.

When my long awaited admission for a 5-7 day Lidocaine infusion was not approved by insurance, I decided to chase down the question that has always been in the back of my mind. The more I learned about Chronic Lyme, the more I became convinced that it was the answer. Not only did it explain my current symptoms but it also explains so much of my milder issues I dealt with in high school. I reached out to the International Lyme and Associated Diseases Society for help in finding a Lyme literate doctor in state. The first LLMD was right here in my town but is so overwhelmed, she cannot accept any new patients. The second phone call I made was to the doc about two hours away from me. She was also swamped and would not be accepting new patients until the end of August and would be scheduling those new patients for October or later appointments. Finally on the third phone call to a specialist three hours north, I had the orders for the more accurate test along with a test for a co-infection called Babesia.

One week later on August 21st I got the call to say that I did indeed have Lyme and Babesia. As strange as it sounds, my family, friends, and I were thrilled! When you have lived with a mysterious illness for so long and watched as everything that makes your life yours crumble away with no way to stop it, finding a name for that demon is like Christmas morning! Now that it has been named, we can better know how to fight it and hopefully achieve remission.

Chronic Lyme Disease is difficult to treat because the bacteria is so smart. It can exist in the body in the form of spirochetes, cystic bodies, and biofilms. The co-infections make treatment even more complicated and while I have been tested for one, I have several symptoms of another called Bartonella. So much of the treatment is holistic, meaning there are a lot of diet changes and supplements which are all out of pocket expenses making it a very costly disease.

This is just the beginning of a difficult battle ahead as treatment can be brutal but it is a battle I’m so ready to take on. Finding a diagnosis has been so helpful mentally and emotionally because now I know that no matter what any doctor has said to me in the past, I am not overly dramatic. I am not a drug or attention seeker. I am just a girl who knows her body and refused to give up on finding an answer.

Medical · Uncategorized

Inside My Head 

Today I was thinking about just how much thinking I do all the time. I realized that I spend most of my time considering things that most people probably never give a second thought. I woke up today extra dizzy from low blood pressure caused by POTS (Postural Orthostatic Tachycardia Syndrome). I knew the best way to manage that was to drink lots of water and eat lots of salty snacks. That sounds simple enough, right? Unfortunately, POTS is not the only way my body fights me. I also had to gauge how much nausea/abdominal pain I was going to deal with today. If I go ahead and eat, is that going to make me too nauseated? Is my stomach going to bloat and be ridiculously uncomfortable? Is it going to cramp up and hurt? Then there was the catch-22 of needing to drink water to combat the dizziness, but drinking lots of water means needing the bathroom, and walking to the bathroom causing dizziness.

This is all just to manage one symptom of one issue. I also must juggle finding the settings on my stimulator to best control the head pain, judging how much energy I have for walking around and knowing where the next place to rest will be, taking meds on time, trying to think through the brain fog, not pushing too hard and causing joint and muscle pain to flare, deciding when to risk eating foods that have the potential to make me sick and when to play it safe… and this is just for my body. I also think about all the things everyone else juggles too like carrying on conversations, making sure my dog is taken care of, being where I need to be when I need to be there, and so on.

While my body is at rest a lot of the time these days, my mind is not. Its usually a whirlpool of thoughts and questions. The more practice I have living with these chronic curveballs my body likes to throw me, the better I get at managing them, but there are definitely time it gets overwhelming, and times when, no matter what I do, the best I can hope for is a better day tomorrow. That’s ok though because at the end of the day, that’s really what everyone is doing! My curveballs come in the form of my body rebelling but we all have things we must overcome. We just do our best in the moment and keep moving forward!



 Hebrews 12:1-3 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.


Jefferson Adventure: Day 5-6

On Thursday, July 27, I woke up alone for the last time in my hotel room and got myself prepped for another day of infusions. As much as I was dreading the drugged, sluggish, awful feeling of having so many medications pumped through my body, I was hopeful that they did seem to be helping manage the headache pain! I made sure to pack up my book and coloring book even though the visual side effects of the meds made looking at things difficult. Sometimes a girl gets desperate for some distractions.

I hopped in the back seat of my very friendly Uber driver’s car at about 7 am and tried to get myself fully awake during the commute. Once I made it to the office I had my usual meeting with the nurse practitioner and we went over the plan for the day. I again had low blood pressure and again declined the Benadryl infusion in hopes of being less groggy and mush brained. I had the same nurse in the infusion center which was nice although this time it took three tries to get an IV placed.

After the second unsuccessful stick, nurse Kristin brought out a fancy-shmancy tool that would shine a light on your skin and illuminate the blood vessels! It was the first time I had seen one in person and we both agreed it was a pretty nifty little contraption. We finally managed to get the IV taken care of and the infusions began with 30 minutes of Compazine followed by Zofran, DHE, Toradol, Magnesium, and more Compazine. Maybe more Zofran. Definitely more DHE. Anyway, it was a lot of stuff.

I tried to be more aware of what I was doing with my neck and made sure to stand up and stretch or walk around in the hopes of avoiding the same muscle side effects from the previous day. Unfortunately that was unsuccessful but more about that in a moment.

Mom got up in New York and said goodbye to her traveling buddies with Turner and opted to get a rental car and drive down to Philly rather than ride the bus back to Terre Haute. Thank goodness mom loves driving! She gets lots of hours logged on the road getting me where I need to go for all these medical appointments! We talked on the phone about an hour before my infusions were going to be done and I decided rather than getting an Uber back to the hotel, I would just wait in the city for her to get there and pick me up.

Once I left the infusion center I walked down to a Dunkin’ Donuts and got myself a coffee and waited for mom to get to the city. I don’t usually drink caffeine as it makes the chest pain more intense but desperate times call for desperate measures and I needed to stay awake! There were a lot of phone calls trying to coordinate me being on the correct corner at the time she would be driving by but we finally made connection and I hopped in the rental Camry with her. Philadelphia is not exactly the most fun place to drive – especially when you’re used to the roads in the Midwest that are wide enough to accommodate tractors! Mom is a trooper though and we finally made it back to the hotel.

We decided to just use Grub Hub again for dinner but an hour after placing our order at a nearby pizza restaurant, we got a call saying their delivery person had not shown up and asked us to cancel the order. We couldn’t find anywhere else that we wanted to order from and didn’t really want to wait longer for another delivery order so we found a little Italian place not too far away. We got the smallest pizza they had which was 14 inches and finished half of it between the two of us. We decided cold pizza for lunch in the car the next day sounded like a plan. Our standards for road food are clearly set quite high. (Insert sarcasm here)

This entire time I had been fighting the muscles in my neck cramping like they had the day before. Then the uncontrollable muscle weirdness went to my eyes and for some reason they would get stuck rolling to the back right side of my head. It was incredibly uncomfortable and admittedly kind of frightening. It was a bit like something else was controlling my eyes and no matter how hard I tried, I couldn’t get them to move where I wanted them to. There were a few tears shed out of frustration and fear but we decided that since sleep helped with the neck issue, we would hope for the same with my eyes and if it wasn’t better in the morning we’d call my doctor. Otherwise, our plan was to get on the road home in the morning.

Thankfully, I woke up with much more control over my eye movements and just left with extremely blurry vision which is a side effect of the medication I’ve dealt with before and I knew that would improve with time. We were up and out the door by 7 am and opted to drive home by way of Baltimore rather than have to drive through Philly again.

I was feeling the fatigue pretty hard but also feeling very restless (another side effect) so I got myself some caffeine riddled coffee with my breakfast croissant at our morning stop. They were terribly overpriced, albeit tasty, but we thought it was ok because we were having leftover pizza for lunch. The drive was, overall, uneventful and I am always thankful for the fact that all of the thousands of miles we’ve driven for my sake have all been safe ones.

As we were passing through, we stopped at my brother and sister-in-law’s house to pick up mom’s little dog, Moxie. We were lucky enough to arrive before my niece’s bedtime so we got to enjoy some entertainment courtesy of the cutest little curly blonde-headed child I know. Once in Terre Haute mom asked if I wanted to go to my house or stay at hers for the night. I opted for my house even though my car was still at my dad’s. We got all the way there and I was unloading my things when I realized I didn’t know where my keys were! I assumed I had left them in my car since I couldn’t find them in my backpack anywhere and because I had no spare house key, ended up staying with mom for the night after all. Spoiler alert: I found my keys the next morning in the one pocket of my backpack I never ever use and didn’t check! Oops!

While trip was definitely not what we expected and in some ways disappointing, I do believe it was worthwhile and have gotten some relief from the IV medication I was able to get. I am very grateful for any positive changes and also thankful for the POTS diagnosis. That is not to be confused with being grateful something is wrong necessarily, but it is nice to have a word that encompasses all of those symptoms rather than having to describe each one individually. It also helps my doctors figure out what course of treatment is most promising and gives me credibility as a patient because, yes, I am still not taken seriously in some arenas. I think the outcome of the trip was overall positive and we have scheduled the lidocaine infusion for mid-September. Until then I will be praying for favor with insurance, more good days to get me through, and reminding myself that while things may not make sense to me, there is a bigger, better plan than my own in place.

Isaiah 43:1 “But now, this is what the Lord says – he who created you, Jacob, he who formed you, Israel: ‘Do not fear, for I have redeemed you; I have summoned you by name, you are mine.'”


Jefferson Adventure: Day 3-4

Dad and I woke up plenty early in order to pack up our things and head to the infusion center to be on time for my 7:30 am appointment. Our Uber got us there with time to spare and after a quick meeting with the nurse practitioner to check on vitals and discuss any last minute questions, I headed off to the infusion room. My very sweet nurse, Pandora, got an IV started and dad went off in search of some decent coffee while I began my infusion of Benadryl, Compazine, Zofran, DHE, Magnisium, and Toradol. All of these are medications I’ve had in the past but this time they were given together and at different rates than past experiences.

The Benadryl had me pretty worn out for a good while so dad was in and out of the infusion room while I slept. He left around 1 pm to head for the airport to catch his flight back home. I finished my infusions around 3 pm and I caught my own Uber to the hotel room I’d be staying in for the next few nights. Unfortunately when I arrived I was informed that the elevators were not working and were not expected to be functioning again for a few weeks. Not the most welcome news for someone who just spent hours having their body essentially assaulted with medications and who on a good day deals with intense fatigue and dysautonomia. Oh, my room was also on the third floor.

I managed to lug my bag and myself up the stairs and generated some laughs from the two men behind me because this healthy looking 24 year old woman was completely out of breath and feeling pretty faint after a short trip up the stairs but I was really too tired to care. I made it to the room and pretty much passed out for the rest of the evening. Dad made it home safely and I missed just enough texts and phone calls to accidentally cause concern. Oops!

I woke up on day four feeling worn out from the day before but thankfully more rested than when I got to the hotel. I got myself dressed and downstairs and called my ride for the morning. My day was much like the one before with a check in with the NP, comments on my low blood pressure, and then off to the infusion room. My nurse took a couple of tries getting my IV started which didn’t surprise me since DHE is a vasoconstrictor, which makes finding a good vein more difficult.

I opted to skip the Benadryl since I didn’t like being quite that groggy while having to stay awake and alert enough to safely transport myself between the office and hotel. The NP said that would be fine unless I started having side effects that required it. Thankfully that wasn’t an issue.

However, after this day of infusions, I did experience a really weird side effect of my neck muscles contracting uncontrollably. That meant that my head was stuck in a position like I was cradling a phone between my ear and shoulder and was really uncomfortable. I tried stretching but it didn’t really help. Thankfully a night of rest did do the trick and the following morning was much better in that regard.

I talked to mom from my hotel room and she caught me up on how her Niagara Falls trip had been going. I updated her on my surprise of just how much more difficult this all was than I expected. We both agreed that we were pretty excited to be reunited the following day! I fell in and out of sleep starting fairly early in the evening and prepared to do it all again in the morning!