Thursday, June 30, 2016

Making Lemonade

You know the saying, "When life gives you lemons, make lemonade?" Sounds simple, right? Such a cute saying, makes everyone smile and think that when we get something we weren't expecting that we can just turn around and another even better opportunity is just sitting there waiting. Yeah...when is anything every that easy?? I think it's partially because life doesn't just give lemons and leave...

No, life comes up to you when you were expecting a bowl of cereal and throws a bunch of lemons at you and while you're trying not to get pelted by flying lemons, squeezes some lemon juice on top of your cereal. Not only do you end up with lemons that you weren't expecting (and were doing your best to avoid), but what you were looking forward to, gets ruined. Now you're left with soggy, sour cereal and a pile of lemons...and you're just supposed to make lemonade like nothing happened???

Right...

So where's my point in all this?

Life with mast cell disease (or any chronic illness) is often a matter of making lemonade. But it's never as easy as it sounds. When we're trying to make lemonade, it's because our cereal was ruined, we're left with a mess to clean up, and if we let the lemons just sit on the counter, they'll start rotting. We're not just figuring out how to make something positive out of a tough situation, we're also mourning what was and trying to piece together whatever plan was just shattered in front of us.

For me, one of the most challenging parts of having mast cell disease is having to let go of things I love. In high school I was so busy that we joked my parents actually saw more of me after I went away to college. I worked as a soccer referee and at Starbucks (plus practically at the barn since I spent so much time there =P). I competed on my horse, so I was riding multiple days a week and helping out at the barn. I played on 2 soccer teams, one with our homeschool group and one club team. I did an internship at the equine medical center. And yes, I also went to school =P I was homeschooled, but did most of my coursework either at our co-op or at the local community college. I was busier than a whole hive full of bees.

And I loved it.

Even in college, I kept up pretty much the same pace. I brought my horse with me the first 2 years, played soccer all 3 years, ran track my first year, swam my senior year, was a leader in FCA (Fellowship of Christian Athletes), in the Spanish and chemistry clubs, was a tutor for the chemistry department, worked as an assistant in the foreign language department, and double majored (almost had a minor, too). Oh, and I did it all in 3 years and probably went to bed after 10 pm a total of 6 times...

I'm not saying that to show how amazing I was at time management (although let's be honest, when it comes to organization, I'm pretty much the bomb.com =P). I'm sharing this more as a point of reference...(my cereal is about to get lemoned...)

In the past 2.5 years, my cereal has been seriously lemoned. I had to give up my assistantship at Kent because I couldn't keep up with the 20 hours a week (let's be honest, it was closer to 30...Do I hear an AMEN fellow PhD students??) of teaching and research required. I stopped working at a running store here in Ohio because just the constant being on my feet and up and down fitting people for shoes was making me even more symptomatic. I worked just over 6 months at a physical therapy clinic doing billing and transcription only 15 hours a week but couldn't even keep that job as my symptoms are just too unpredictable and I was calling off too often.

I'll be honest, when I talked with my boss at the physical therapy clinic and agreed that I probably wasn't able to continue working there, it was frustrating. It's not that I was unjustly let go. It was because I knew I wasn't keeping up. I had called off 3 times in 3 weeks...and I only worked 2 days a week...can't say I didn't see it coming, but disappointing all the same.

My cereal bowl full of hopes of being able to teach, finish my degree, begin a career, etc. was being soaked in lemon juice. Plus, in the midst of all this, I'm seeing doctors, getting test results, being told we really don't know what is causing my symptoms and have no idea how to treat them...yeah, those would be the lemons that I am not so successful at avoiding.

I'm left with a bowlful of failed attempts to work and be productive and a pile of diagnoses and test results. Suddenly I had all the tools I needed to make lemonade but was too discouraged and worn down to even attempt. It wasn't what I was expecting. I wasn't prepared to make lemonade. I didn't want to make lemonade. I just wanted my cereal!

I had my moments where I just felt discouraged. I had to stop working at the running store which is something I truly enjoyed. I couldn't keep up at my teaching assistantship at Kent so I had to give that up. Now I couldn't even keep up with a sit-down desk job. It just made me feel like a failure. I'm not used to not being able to do things, so when I can't sometimes it's even more frustrating than it maybe should be.

But it's not like me to give up.

In high school I had the reputation of playing through injuries and being carried off the soccer field because I didn't know when to quit. My nickname in college was SVU from Law & Order: Special Victims Unit. Yes, I had my moments of crying over spilled milk (okay, more like sour, soggy cereal if we're sticking with my first analogy, but I'm on a cliche roll right now!). But then I dumped out the cereal and moved on to the lemons to see what I could make out of them. This isn't the first time I've been pelted with lemons...maybe I'm at bit tired of lemonade at this point, but I know that at least I can make it.

Last summer I lost the ability to run and that progressed to being almost unable to walk. It was one of the more scary symptoms I've dealt with because for months we had no idea what was causing it. We had no idea if it would be permanent or if it could be fixed. I had plenty of times where I just missed what I used to be able to do and was scared I would never get back to that point...but I didn't let myself stay there. Instead of just accepting being unable to walk as my new normal, I started physical therapy and kept searching for answers. It doesn't always work out this way, but this time I was able to regain a lot of what I lost. I'm not back to my baseline, but even my neurologist agreed that the improvement was impressive. I fought my way back to running again, and even though it's no where near where I used to be, I'm not waving a white flag yet, I'm staying in this battle...and I'm far from out...

So when I lost yet another job, I had my moments of discouragement, but I'm not giving up here either. Lemons, I got you beat! I'm pretty much an expert at lemonade at this point. Plus I still can't consistently eat solid food, so cereal really isn't a good choice for me anyway. Let's do this! Lemonade here I come...again...

Monday, June 27, 2016

You Can't Make This Up

I'm used to dealing with a bunch of craziness from doctors and such, but this story I think takes the cake (or whatever a gluten free, dairy free, soy free, essentially food free version would be.)

Most of my doctors have switched to an online portal system for results and records and messaging. While in theory this is supposed to make things easier for communicating blood work results and non-urgent questions, I found a major flaw in the system...through no fault of my own I should mention.

At this point, all my Ohio doctors except two are within one hospital system. Those are the ones that I see most often, so I rarely use the portal for the two doctors that are in their own system. A few months ago, I got an alert that my medical records had been updated, but I hadn't seen either of those two doctors in months. I logged on to see what they had changed.

That's where the fun began...

When my account loaded I saw the updates that had been made. I've been told a lot of crazy things from doctors and been diagnosed (or not diagnosed) with all sort of things that were not correct. This one though...I hope you enjoy it as much as I did (at least for the first 10 minutes...I'll explain that in a moment).

Apparently, I not only developed a problem in yet another organ, but this time it was in one that I don't even have...and I also happened to change sexes...yes, I just said that. According to the updates made to my online chart, I now had a prostate problem. The best part? It began in 1984...For anyone not catching that, I wasn't even born in 1984!

Let's just say, that got me laughing! At least for a few minutes...until I tried to resolve this issue.

Not only did I have some wrong information on my chart, but this clearly had not been entered into the correct chart. That means that someone who needs this diagnosis visible for his (no assumptions being made here, definitely a his =P) doctors is missing this piece of his medical information. I decided to call the tech support number listed on the website figuring they would be the ones to be able to fix the issue and figure out how this mistake was made so the information could be added to the correct chart.

I could not have been so wrong...

I probably spent 20 minutes on the phone with tech support pretty much talking in circles. I explained the problem and asked them if they could remove the incorrect information from my chart and trace the data to the doctor who entered it so it could be added to the right patient chart. The tech guy said that he cannot alter the medical records. I asked him what I was supposed to do about the incorrect information, and he told me that I needed to contact the doctor that put it on my chart for it to be removed. Yeah...about that...I repeated that I had no idea WHO entered the information because it was very clearly not about me. He repeated that he couldn't help me since he cannot change the medical records and told me to contact the doctor who added it to have it removed. You can see how we went in circles...

I finally gave up talking to him and thanked him for the lack of help he provided. I called one of my doctors who used the same online portal and explained the situation to the nursing staff. By the end of my phone call, I had the nurse laughing. She said they would look into it and see if they could get it off my chart. She did say there likely wasn't any way they could figure out who was supposed to have the prostate problem, but at least we know I don't anymore =P

Seriously?!?! I can't make this stuff up...

Friday, June 24, 2016

Health Update June 2016

I realized that I haven't done a health update in a bit, so here's what's been going on.

Not much.

Other than 2 back-to-back days of anaphylaxis, a trip to MN to see my specialist, new symptoms that we can't explain,..yep, I'd say it's a pretty typical month so far!

I was supposed to have a follow-up with my endocrinologist last Monday to discuss some of the blood work I've had done recently and where we need to go in managing my blood sugars. Unfortunately, Impromptu Anaphylaxis Episode 1 earlier in the day meant I spent Monday afternoon in the ER instead of at my doctor's...Thankfully, I was still able to touch base with her and we decided just to wait things out for now. My blood work is borderline, meaning I am showing some adrenal insufficiency. The tricky part is that the treatment for adrenal issues is going on steroids that once they are started I'd be on for the rest of my life. Because my mast cell disease throws a wrench in any sort of plan of action, we've decided to give it a couple of months and see how things are going. If I continue to have blood sugar management issues and my blood work keeps coming back with the same results, then we may have to revisit whether we do need to treat the possible adrenal insufficiency. For now, though, we are just going to monitor things. After talking with my specialist in MN, we feel more comfortable with this plan as we agreed that it is most likely due to mast cell issues rather than a separate adrenal problem. That said, if things continue to show more signs of insufficiency, then regardless of whether it is mast cell driven or not, we may have to treat it...but we're not there yet, so the waiting game it shall remain!

I'm also still in a bit of a waiting period with my neurologist. She has referred me to a new neurologist as she is not sure why I am having some of the new symptoms that I have developed or why some of my previous symptoms are not resolving with the current treatment. I had sent in paperwork to be seen by a specific neurologist at the Cleveland Clinic who only sees a very select patient demographic, but he did not feel that my symptoms were consistent with his specialty. It was a bit discouraging to not be seen by who we had hoped would really be able to give us some answers, but we are trusting that God had a reason that I did not need to be seen by him. In the mean time, I am trying to schedule with the doctor my neurologist referred me to. Unfortunately, he is booked through the rest of the year...my neuro is trying to pull some strings to get me in sooner since she knows him, but we'll have to see...latest news is maybe by August...

Impromptu Anaphyalaxis Episode 2 happened less than 24 hours after IAE1. We're still not sure if the two were related or I got exposed to two different triggers that set me off. Anway, after waking up the next Tuesday morning, I felt surprisingly okay after the ER visit on Monday. I spent the morning with some friends and felt fine. I stopped briefly at the store and felt fine. I got home to get some work done and felt fine...until about 2 hours later. Tuesday afternoon was spent trying to stay ahead of my reaction with Benadryl and breathing treatments and hoping to avoid needing to use an epi pen or return to the ER. Unfortunately, we decided that things were continuing to progress around 7 pm and headed in to our favorite local establishment. I hoped that we'd make it before I needed my epi pen and could let the doctors and nurses take over, but that ended up not being the case...about 10 minutes out from the ER, I could feel the tingling in my mouth and throat start to swell and swallowing become a problem. Cue the epi pen.

Thankfully, the epi pen has not yet failed me and works quickly. Unfortunately, some of the side effects of injecting myself with adrenaline include severe tremors which lead to major muscle cramping. Anyway, we were able to calm things down, but after 3 hours or so, I started to have some symptoms begin to reappear, and it took another round of medications to  get things under control. Nick and I finally headed home about 2 am. Just enough time for a great night sleep before Nick had to leave for work at 7 am. #unsungherostatus

So far, it appears that anaphylaxis is keeping its distance for the most part since these two reactions, and hopefully that will continue.

My mom and I just got back from Minnesota for my 6 month follow-up with my mast cell specialist (yay for mother-daughter road trip!). I actually met with his PA (Physician's Assistant) this time, since he is now booking out about a year...I'll see him again when we go back in December. It was a still a good visit, and we were able to discuss things with her and hopefully have a plan moving forward for the next few months.


We are tweaking some of my current medications to see if changing the timing and dosage will have a positive impact on my symptoms. We are also considering adjusting my Xolair injection schedule to see if we can minimize the harsh side effects while still seeing a benefit. We talked with her about some of my newer symptoms to see if she had any thoughts on those, and were able to get some insight on what is likely directly mast cell related and what may be something resulting from mast cell hyperactivity. I know, those basically sound the same...the reality is, the difference in the two is not much clearer on paper than it is in my (or any mast cell patient's) body.

These appointments are both encouraging and discouraging. They are encouraging because it is so good to be able to talk to these researchers who study this stuff every day. Even though I now have a great network of local doctors, they still aren't familiar with mast cell disease and the havoc it causes on my body like Dr. Afrin and his staff. Being able to spend an hour talking with his PA about specific symptoms and treatment options is an incredible blessing that is not available for all mast cell patients, and I am so thankful to be able to do that.

At the same time, though, these appointments can be a bit discouraging. Mostly because the reality is that there is so much still unknown. There are so few answers in the mast cell research world, and while Dr. Afrin and his colleagues are working tirelessly to find answers, the progress is slow in coming. While we did talk with his PA about a variety of topics, the common thread was that the doctors still just don't really know. What don't they know? Pretty much anything...

They don't know why Xolair works in mast cell patients or even what the physiological mechanisms are...they just know that it does. They don't fully understand how or why mast cells cause the widespread systemic symptoms throughout the body when there are still normal amounts of mast cells...the ones I have are just twitchy. They don't know yet if there is truly a genetic link; they can only comment on the growing number of children being seen that have parents (usually moms) with varying forms of mast cell disease.

BUT, despite the fact that right now it can feel discouraging, progress IS being made. Hopefully, one day I'll go to one of these appointments and hear there has been a huge breakthrough in research! Maybe that will be next time, maybe not for another few years...either way, until then, I'll keep on keeping on, manage things as best as possible, and keep smiling every day!

So that's what's been going on recently health-wise. What's coming up next you might ask? Not much. WHAT????

Yep, it's true. After having some pretty harsh side effects from the few medications we have tried recently, we feel (along with my doctors) that my body needs a break. It is hard to tell how I am truly doing on the  Xolair injections when there are other medications interacting with my body causing other issues. Right now, my other issues appear to at least be stable, so other than my current medications that we know I tolerate, we are taking a break. No new medications.

Obviously, if something serious comes up in the next few months, we will revisit that decision, but for now, I get a break! To say I am thrilled would put it lightly! I have another probably 2-3 weeks until the most recent medication fail is fully out of my system, so hopefully in that time I will get back to whatever my baseline was. We are still hoping to schedule with a couple of specialists in the coming months, but in the short term, other than my Xolair injections and follow-up with my allergist, NO DOCTORS! Wooo!!!

We're hoping that includes ER and hospital doctors, too =P Stay tuned for an update on Project No New Meds for Kylene! And as always, thank you for your prayers. We are so humbled to know that so many people have been and are faithfully praying for us during this season of life. Thank you for supporting us and being a part of what God is doing in our lives.

Wednesday, June 22, 2016

Leni Has Met Her Match

Since bringing Leni home in October of last year, we had yet to find something to phase her. She has been so confident and even keeled, even things that spooked other dogs really didn't bother her. Until our recent trip to MN to see my mast cell specialist...

I used to do a good bit of swimming. I was on the swim team in college and did a few triathlons. I LOVE open water swimming, but unfortunately can't do it while I have Herman due to the infection risk. Anyway, while we were in MN, our hotel had a really nice pool (an actual LAP pool) that my mom and I wanted to use. The only catch was that Leni had not ever been at a pool with me, and we had no idea how she would react.

Spoiler Alert:
She didn't react well...

We decided to try tethering her to the benches along the wall to keep her away from the actual water because we thought she might try to jump in with me. I got in at the closest point to her and just stayed in the water by the ladder. Leni was NOT happy. She started with whining, and eventually progressed to small yowls/barks.

We tried to make it a fun experience with her by giving her treats when she was quiet and distracting her. She was praised and talked to the whole time. I would get in and out of the water to reassure her and remind her that I was okay.

She wanted no part of it. Her job was to stay with me and watch out for me. When I got in the water, she couldn't do that. After about 15 minutes, she did lay her head down on the pool deck (even though she was still whining) and that was when we left. We made sure it was a positive experience by giving her a chance to walk with me a bit on the pool deck (no whining) and doing a down-stay with me at the edge of the pool (no whining). She got praises, treats, and pets when she calmed down a bit, so hopefully pools will not automatically be a negative experience.

We are hoping to do some pool training with her and work through this trouble spot for Leni. Hopefully as she realizes that I am okay in the water, she will be able to sit quietly without whining. My guess is that it will take some time, but with practice, we're hoping that she will understand what is going on when I get in the pool and not get super distressed.

Project Desensitize Leni to Kylene in a Pool has begun!

Leni snoozing on our way out to MN. Isn't she so snuggly?!?!

Tuesday, June 14, 2016

Life Lessons with Cicadas

I had an aha-moment recently while I was on a run with Leni. If you're in the northeast Ohio area, you've likely seen (or at least heard) the large amounts of cicadas that have overtaken sidewalks, front yards, and parking lots.

Side note: Leni is a huge fan and has decided the cicadas are a delicacy she must take advantage of before they are gone again.

Anyway, Leni and I were out for a run and I was attempting to pray. Running has always been a stress-reliever for me and a time that I could clear my head and pray. I had been really missing it over the past 9 months that I haven't been able to run, and it is super exciting to be slowly working back toward actually running again.

That being said, I'm still not back to where I was in my running ability. I have to focus on what I'm doing or it doesn't happen...literally, I have to think about putting one foot in front of the other. I know that sounds weird, and trust me, it FEELS weird. To not have the coordination to do something so basic 2 years olds can do it without thinking...yeah, there really isn't a way to describe how that feels.

Anyway, all that to say, running is not yet back as a stress-reliever, but sometimes, early in a run (before I REALLY have to focus) I can get some prayer time in. 

That was the case on a recent run. I've been having a bit of a rough time physically, and this time we're really not sure why. I went almost an entire week without leaving the house because I was feeling so sick. I am no longer working at my job because I kept having to call off because my symptoms were getting too severe to work through. The amount of medication I need just to get through the day is slowly increasing again.

One of the toughest things I deal with living with mast cell disease is that I feel like I live in an isolated bubble. What purpose can my life have when I don't interact with anyone? How can my life make a difference for God when I go days without seeing anyone other than Nick?

This was on my heart during this recent run, and I was crying out to God, just not understanding how my life could be doing anything that would matter for eternity. Even after this run, I still don't have an answer...at least not to that question...but God did show up to answer a question I had no idea I was asking.

Back to the run...Leni and I were dodging cicadas both on the ground and in the air, and I started thinking about the last time we had an insurgence of cicadas which happened when I was a freshman in high school. I told Leni (yes, I talk to my dogs...) that she better enjoy these few weeks while she can cause this might be the only chance she gets to enjoy the hoards of cicadas. And that's where the aha moment came.

For some reason, our incredible Creator chose to create insects that only surface once every 17 years. Think about that for a moment...Somehow, these six-legged, bug-eyed (not an insult, just fact) creatures serve a specific purpose, apparently known only to God, that requires their presence only once in the lifetime of an average household pet. WHAT??

If a cicada that only surfaces once every 17 years, mates, then dies, has purpose enough to be created by our infinitely creative and personal God, how much more purpose does my life have? Does anyone's life have?

I realized that while I might not see how my life fits into God's plan right now, that's okay. Cicadas probably have no idea they even exist for 16 years and 360 days. Then all of a sudden they are woken up, go crazy for a few weeks, and fulfill their purpose as 17 year cicadas. And can you imagine what goes through a cicada mind (just go with it okay...) when they surface to see the world we live in after spending over a decade and a half living in dirt and tree roots??

Even Jesus flew below the radar for 30 years before beginning his ministry. That doesn't mean the first 30 years of His life had no purpose. It just means that God's plan was bigger than Jesus' life as a 10 year old or 20 year old.

I might not be quite as big a fan as Leni, but thank you cicadas for reminding me that just because I don't see a purpose for my life right now doesn't mean I'm not a part of what God is doing. Maybe I have to wait 17 years to see, maybe it won't be that long.

Regardless of how long it may be, I just have to remember that even the seemingly "dormant" seasons of life may be preparation for something incredible that God may unveil in my life at a later time...and that my purpose in God's ultimate plan for eternity is so much bigger than specific moments of struggle in my life.


Friday, June 10, 2016

Sometimes, I get jealous...

Sometimes I get jealous.

I know, we all have those moments...but mine just feel like they come at bad times.

Dealing with a chronic illness means my normal has changed. My family's normal has changed. What might be ER symptoms for someone without mast cell disease are now just wait-it-out symptoms in our family. The threshold of worry has been raised because we've learned how to live with symptoms that range from just uncomfortable and annoying to severe and uncontrolled.

I'm not saying this to sound like I'm so hardcore. Actually what I'm saying is that the place I'm at right now is unfortunately conditioned to harsher symptoms than we would wish on anyone. If you live with anything long enough, you figure out ways to deal with it. Whatever that may be. Nausea, vomiting, dizziness, shaking, headaches, fevers, shortness of breath, numbness, vision changes...what used to be worrying symptoms, I've now learned to work through and just manage as best I can. Not because I want to show how tough I can be, but because I want to have a life. If I only do things on symptom-free days, I would not do anything.

Yes, I did just say that. I am symptomatic EVERY. DAY.

After almost 10 years of symptoms at this point, I've just learned what needs worry, what I can work through, and when I am down for the count. I don't always get it right, but usually I can adjust my activities accordingly. Passing out only once or twice in an afternoon is no longer a reason for worry. Throwing up every morning for a week, eh, what's "normal" anyway??

So how am I jealous?

I get jealous of friends who are sick or hurt.

Yes, I just said that. I'm not proud of that, but it's true. I'm hoping I'm not alone in this and that other people living with mast cell disease or chronic illnesses can relate.

When someone who is mostly healthy is hospitalized or badly injured, the first thing to happen is for friends and family to rally around them. Meals are brought, prayers are said, people make time to come visit either in the hospital or once they get home, they are reminded how loved they are and how much we want to be there for them.

I'm not at all upset about that. In fact, I love being able to help in whatever way I can. I love delivering a meal when someone is out of commission or picking something up from the store or just spending time with a friend when they are stuck at home. One of the blessing of living with a chronic illness is that I CAN relate when someone is stuck at home for extended periods of time, and I so enjoy being able to just spend time with someone who needs some encouraging because I know how much that means to me.

Here is what's hard. When someone mostly healthy gets an acute illness, there is a crisis period of illness, but with time, it fades. Infections leave, incisions heal, injuries mend, and eventually the hospital stay is just a memory and life goes on. And as the health crisis passes, the need for help also fades. The family and friends who so willingly made time to help are able to be a part of the healing process and rejoice as everyone is able to resume normal life again.

With chronic illness, we get stuck in a crisis and recovery cycle. We go back and forth between ER trips and trying to recover at home. Many times our symptoms persist even if we don't go the hospital, since there may be little that doctors can actually do. There is no transition back to "normal" life because our normal has changed.

And that's where I get that feeling of jealousy. It's that I wish I had an acute illness, too. Not so I would feel loved by friends and family (I do, trust me =D), not so Nick and I would get meals delivered to us (let's be real, that's not so helpful for someone with a feeding tube anyway =P), but because it would mean that there was an end.

Usually I am okay with where I am at. Yes, it can be hard and disappointing and frustrating at times, but over the years, I am learning (notice I didn't say "have learned") how to be content with where God has me, and take life one day at a time. Nick and I do our best to find a reason to smile every day and enjoy life despite mast cell disease, and we do!

But it's in those moments when I see friends and family dealing with their own medical crisis, that it hits me again that their hope for treatment and return to "normal" life is something I don't have right now. The "prayers for healing" posts on facebook and meal sign-ups during the recovery period are sometimes just painful reminders that my healing may not come in this lifetime and my "recovery period" is open-ended and likely has no end.

It's not that I'm jealous of the pain that people may be going through that I'm all too familiar with. It's not that I want to feel the support from friends and family that appears during an acute illness. It's that I'm jealous of the temporary nature of acute medical issues and that the chronic-ness of mast cell disease just hits me in the face again.

"Hope deferred makes the heart sick, but a desire fulfilled is a tree of life."
Proverbs 13:12

It's in these moments of seeing and feeling hope deferred yet again as more months pass without healing while seeing others granted healing and feeling the harsh reality of living with a chronic illness hit anew that I truly feel what this verse is saying as making the heart sick. It is hard. It hurts. There are days when the weight of this world is overwhelming. And I get jealous...wishing that I didn't have to wait...wishing that maybe my prayers for healing would be answered this time...

But even in the midst of that jealousy, I try to remind myself of what my true desire is. The reality is that while I have moments I deeply long for healing, more than that, my deepest desire is truly that my life would be lived in a way that points to God...regardless of my circumstances...I'm reminded that all pain and suffering is temporary. I was not created for this world, and while my chronic illness may follow me during this life, I still have that same hope for healing for eternity. What seems like forever in this life will be such a brief moment compared to life in heaven. Those are the truths I try to hold onto during these moments of jealousy...it's just that there are times the reality of life in a fallen world just hits harder than others...

I don't want to be jealous of temporary health, but be thankful for the promise of eternal healing. Sometimes it's just hard to see in the midst of what FEELS unending while watching others receive healing now.


Monday, June 6, 2016

The In Between of Chronic Illness

I got a call last week from my endocrinologist. At my appointment 2 weeks ago, she had told me that she was concerned that there was more to my hypogylcemia than just low sugars but that my testing so far had been borderline/inconclusive. She really felt that our best chance to figure out what was actually going on was to repeat the Cortisol Stimulation Test I did about 2 months ago that caused me to go into anaphylaxis.

It's safe to say I was less than thrilled when I heard that I was going to have to repeat this test. I was actually legit scared. But, thankfully I do have a doctor that I trust, so I agreed to re-do the test to make sure we aren't treating something I don't have or not treating something I do. I was a bit nervous knowing what was coming, but was doing okay in not letting that overwhelm me. It was just a matter of waiting the 2 weeks until we got to the scheduled test date.

Then I got a call from my doctor early last week. She told me that the infusion center had notified her that they did not feel comfortable having me repeat the Cortisol Stim Test based on my reaction the first time. They were not willing to have me come and re-do the test even at the lower dose that my doctor hoped would prevent a bad reaction. So, instead, I was given some blood work to get drawn early in the morning to hopefully shed some light on what is going on in my body. Once we get those results, then we will discuss how we need to proceed whether doing some more testing with me admitted to the hospital or if there is another way to get the information that we need.

When I got that call from my endocrinologist, my initial reaction was to sigh in relief. I didn't have to repeat the Cortisol Stim Test! Then the reality of it set in and I realized it wasn't as big of a relief as I had thought. The reason we were going to repeat the test was because we were still trying to figure out the underlying cause of my low blood sugars. While the thought of anaphylaxis is not exactly comforting, realizing that this meant we still would not have the answers we need brought on a whole new cycle of unanswered questions. How are we going to figure this out if we can't do the most least invasive test that would give us the best chance at accurate information? What if all my blood work keeps coming back borderline/inconclusive?

All of a sudden I realized I desperately wanted to be able to do the test when only a few hours before the thought of it made me nervous. Unfortunately these situations become all too common when dealing with a little understood condition. The very testing that could give us answers is too dangerous to try. Treatments that we think might be the best option can also cause severe side effects. We get stuck in the in between of not knowing and not being able to know.

Do I want to find out I have some form of adrenal insufficiency? No, of course not. But if I DO have it, then I want to know. Not having answers doesn't mean that I don't have symptoms. It just means that we don't know WHY I have symptoms and they are going untreated. At least when we have answers we can try to do something about it.

It's like the night we got the call from Dr. Afrin's nurse confirming the MCAS diagnosis. I cried. Not because I was scared, because I was relieved. We already knew something was wrong. We had known for 8+ years. I cried in relief when she called because after all those years of not knowing, we finally had a name for what I had already been fighting. The diagnosis wasn't terrifying because we already knew my body wasn't working right. It was welcomed because it now gave us a name, a face, something to fight about. It gave us hope.

Dealing with this endocrine issue is similar. We know something is wrong. There is no reason I should be having these low sugars while on continuous feeds, especially the reactive ones. But I am. While the thought of another diagnosis is not at all what we want, the feeling of not knowing is worse. If I do have some sort of adrenal insufficiency, we want to know! If I have it, I've already been dealing with it, it's just been going untreated. At least once we know, we can DO something about it. Being in this weird in between spot where we know something isn't right but just don't have specific answers is almost tougher than not knowing. At least we would have hope that treatment would help.

Any chronic illness, but especially those where things are just not well understood, unfortunately leave us in this in between place way too often. Add to that doctors who don't care and it is a tough road to walk. I am so thankful to be in a place with doctors who understand and want to do everything they can to help. Unfortunately, more often than not my appointments end with them saying that they wished they could do more or had more answers.

Don't we all...