september updates

There's this unspoken rule that people (namely Christians) are expected to fight serious disease/illness with total grace.

Most times it's not that.

It's kicking and screaming and questioning and then God sweetly repeats: "my grace is sufficient for you. My strength is made perfect in weakness."

As a Texan, New Yorker, and generally stubborn woman, I forget that. It's hard for me to be vulnerable because I set myself to such a high standard: personally, professionally, and spiritually. As in, "if I don't do XYZ, then I haven't achieved my mission and have subsequently failed."

But lately, the Lord has sweetly imprinted this verse on my heart:

"The Lord will fulfill his purpose for me;     your steadfast love, O Lord, endures forever." Psalm 138:8

His purpose for my life is greater than I could ever imagine or expect. When I forget this, He gently gives me perspective and gives me the best gift: trust. Trust that He is good. That He loves me. That He has my best interests in mind. That His purpose for me is greater than my own.

And with that, here are my updates:


updates

The past few weeks have been a blur. Lots of tests and doctor appointments, but with that, I've also been relapsing like crazy. I can't go on my new antibiotic regimen until Friday because my gut has to heal in order for me to go on this without getting super sick. (See last entry.) 

In this season, I've just been trying to do small things that bring me joy: watching Portlandia, laying on an air mattress in my living room to watch TV, and going to the dog park to hang out with dogs that aren't mine #noshame. I even got to go to Nashville this weekend since my family was driving up to see my stepsister's new baby!

nashville!

New doctors 

The great thing about being back is not only having an amazing Lyme doc, but he has connections to other specialists that I desperately needed that also know Lyme. (Known as LLMDs, or Lyme-literate doctors.) To see these doctors has been an absolute game-changer as there are only a couple dozen that know both their respective areas and Lyme. 

What kind of doctors, you ask? Two types have been pretty instrumental throughout this whole process because Lyme has been wrecking my central nervous system as well as my heart. They know what to look for in Lyme patients -- and instead of shrugging when I tell them strange symptoms, they actually know what to do and take it seriously. I've also learned I don't take it seriously enough. (Oops. But it makes for a lot of great jokes and by great I mean terrible) 

The two new doctors/teams include:

1. Neurologist; to make sure I don't have any more seizures, mini-strokes, etc. 

2. Cardiologist / Autonomic disorders specialist: because this whole passing out/dysautonomia thing. sucks. 

Another day at the office!

The tests

Throughout this, they've ordered a crazy amount of tests. What kind of tests, you ask? About 20 tests. I don't feel like listing them all out. But it includes anything like:

-MRI

-MRA

-EMG

-EEG

-EKG

-Nerve Conduction Study

-Tilt Table Test

-MST (Metabolic Stress Test)

-Heart echo

-Ultrasounds of arteries, hearts, blood vessels, etc. 

-Heart/halter monitors (if you see me wired up that's why!)

-Autonomic testing, Qsweat tests, etc.

I've already gone through about five of them and a lot more to go. September I've already accepted will be "the month of many tests." Encouragement is much appreciated. 

(Side note: do you have horror stories from any of these tests? Great! I don't want to hear them. Kthanx!) 

If I'm wired up, this is what it'll look like!

The new information

Can I just say how awesome it is to have a doctor where I don't have to tell him what kind of tests I need? They actually know what do test for and what to look for. Throughout this process, we've gotten some surprises -- both good and bad. We roll with the punches, since that's what you gotta do! 

Without further ado, some new information we've learned:

1. I have an active EBV infection. This basically means mono.

But don't worry! Doesn't mean I'm contagious.

EBV (Epstein-Barr virus) is in the same family as Chicken Pox, Mono, & Shingles. So, basically, most people have this, but it takes something to really bring down your immune system to "trigger" an active EBV infection. (There's a reason why a lot of college students with the flu get EBV - "mono.") 

That means a lot of Lyme patients also have mono/active EBV infections. As in my doctor's words: "just don't go kissing any babies or anything." Noted. 

"After you get an EBV infection, the virus becomes latent (inactive) in your body. In some cases, the virus may reactivate. People with compromised immune systems are more likely to develop symptoms if EBV reactivates." Source: CDC.gov

Other doctors didn't catch it because they thought it wasn't active like 99% of the population. This is where it's key to have a doctor that actually knows his ish and can get good testing done.  

Is this diagnosis a good or bad thing? Good that we now know and can somewhat treat it. It just makes Lyme more difficult to overcome. Also, I've most likely had it for the past two years.  

It's funny how people become so much more sympathetic when they hear about the EBV/mono because they can actually understand how much it sucks. But honestly, this is small compared to Lyme. 

Prognosis: anti-virals for now, it'll be much easier to get rid of it one I get rid of this pesky Lyme. But it's all a part of the process. That's why Lyme is now often referred to as MSDIS (Multi Systemic Infectious Disease Syndrome). 

2. In addition to my cortisol levels being extremely high (welcome to Lyme!), I also may have tested for a Lyme co-infection using standard testing. **To test positive for something with Lyme using the standard testing methods is a BFD since it only catches 40-50% of cases.**

For those of you who don't know, co-infections that come with Lyme can be even more difficult to treat than Lyme itself. See: Babesia. Clever girl. 

These tests are so important, I have to retest to double-check for accuracy purposes. More to come on that when I get test results back. You'll know when I know. 

3. Finally, my cardiologist same some...interesting...news last week:

Upon review of my history, physical exam, and test results, he has a strong suspicion that I have a rare genetic disorder called EDS. I hadn't even heard of it before, and you're talking to the rare disease queen here. (Again, can we talk about how boss it is to have docs that actually know more than you?!) 

In his words, he told me: "I'm not saying whether you do or you don't have it. But what I am saying is there are nine unique markers for EDS, and you have 8-9 of them."

How does this affect things? Great question. First, to confirm (or not) his suspicion, this is where a lot of this testing helps because he actually knows how to look for it and diagnose it. Y'all, for the past 120 years, it was purely based on clinical diagnosis. But, as of one year ago, I can actually go to a geneticist so I can be officially diagnosed if these tests continue to point to EDS. 

Patients with EDS are 40% more likely to have POTS/dysautonomia (the passing out thing), and 20% more likely to have an anuerism. Also, in his words, "I want to make sure to have these tests done soon so you don't check out." lolz. Like life is a Hampton Inn. Moving on.

So, it's likely I've had this my whole life, and as my doctor put it: "you probably thought all of these weird symptoms you've had your whole life were so normal because you dealt with them, but now Lyme has triggered the POTS portion which is debilitating." True story. Another fun fact: he wants me to keep working because EDS patients are "scientifically proven to be overachievers." He even has a patient that competed in Miss America.

The good news? If I can get in remission from Lyme which triggered this mess, I can get back to my pre-Lyme levels of energy, the dysautonomia/passing out will likely subside, and there on I'll just know how to be aware/treat these things that put me at more risk for serious medical events. 

The bad news? It makes healing from Lyme a whole lot more difficult and can be potentially dangerous. And makes living with Lyme a lot more difficult since passing out in lines, airports, heat, when I'm tired, etc., really cramps my style. (Looking at you, Third Eye Blind concert and long lines.) 

I know you'll want to have a silver lining of: "wow! that's great you have such great doctors! you are so #blessed!" Yes it is! However it doesn't make it suck any less. Just keeping it real here, friends. 

Next steps

  1.  My next appointment with my Lyme doc is coming up on Friday. My six weeks of gut healing and prepping me for heavy-duty treatment are now over, and now comes the real treatment part with even more intense antibiotics.  I mean, the whole process started six weeks ago, but Friday is when the even more intense part starts. Try to think of it this way: for the past ~2 years, I've been jogging treatment-wise. The past six weeks have been running. The next few months will be sprinting. I don't mean this speed-wise since it might still take a while but more as intensity-wise. It might have been a bad analogy. But whatever.
  2. Also, see #5 below re: the question: "Are you feeling better yet?"
  3. CRAZY amounts of tests - started ~10 days ago.
  4. I'll have more answers by the end of September once those tests are over. I'll let you know when I know. 

Things you can expect from me / ways to pray / how you can help: 

  1. I'm probably not going to be super responsive to a ton of calls, texts, and/or emails within the next couple of months or so. Please don't take it personally! :) I get a lot of texts throughout the day and I am still working.  And if it happens to be on a treatment/test day, the texts pile up quickly and get lost in the shuffle. But please feel free to keep checkin' in! I always appreciate it!
  2. Encouragement, encouragement, encouragement! It means the world and to have a support system like you guys makes it all worth it and keeps me going. I'm serious! So keep it coming, friends! I am so thankful!
  3. Don't feel like you always need to be super peppy all the time or feel like you have to avoid the topic. It's basically my job to heal from this dang thing, so if you ask about it, you're basically just asking about my job. ha!
  4. Hang out with me/bring me chipotle/play n64 with me. I'm still meeeee!
  5. The question "How are you feeling?" is a lot better one than "Are you feeling better yet?" The way Lyme treatment works is compared to chemotherapy, so asking me if I'm feeling any better yet is probably always going to be met with a no. :) Also, this is a process that takes several months to years.
  6. At this point, I don't feel well enough to host people to stay with me. If you're in Dallas I'd love to see you and hang out, but unfortunately I don't have the energy to have people come stay with me. Once I'm feeling better, I'd love to have more people come stay, but for now it's not wise on my end. :)

How am I doing, you ask? Well, to be honest. I'm fine emotionally. This new information honestly just helps me know what I'm working with. It's like having a really bizarre opponent in a war and knowing what unique tools you may need in order to survive in battle.  Physically, it's been a rough few weeks, but all we can do in march forward! 

In the meantime, I'm going to be rejoicing in the Lord and the small things and making bad jokes -- much to the delight and chagrin of my healthcare providers (depending on who you ask).

Onward! 

 

lyme recoveryElise Graham