Tuesday, December 23, 2014

Next Year in Jerusalem

Why do we celebrate Christmas? I'm sure almost everyone could give the Sunday School answer to that..."It's Jesus' birthday!"

And if you said that, you'd be correct! But if you really think about it, WHY do we celebrate His birthday? Nothing changed that day...okay, I know Jesus being born is a big deal, but think again...salvation DIDN'T come that day, if Jesus had not lived a perfect life, His dying on the cross would have been meaningless. So why do we celebrate?

Why did God tell the shepherds to go to Bethlehem to see Jesus? Again, TECHNICALLY salvation had yet to be accomplished. So what were they celebrating? A popular Christmas song that can be heard on the radio (practically on repeat right now...) has the line "hope is born today."

And THAT I think is the key. HOPE. God makes promises, and He always keeps those promises. But at the same time, He recognizes that we are human...and we forget. So He gives us glimpses of the fulfillment of those promises along the way so we don't grow weary. Even when we do not always see the fulfillment of those promises because it may not happen during our lifetime, God still gives us the glimpse of that fulfillment.

In Luke 2, Simeon and Anna were two people that had lived their whole lives being promised the coming of the Messiah. They had not and would not see the fulfillment of Jesus dying on the cross and rising again, but God gave them a glimpse of His promise in the birth of Christ. HOPE had come to them.

And I believe that is the real reason we celebrate Christmas or at least why we SHOULD celebrate. We should think about celebrating the HOPE of salvation that came when Jesus was born.

Why am I mentioning all this? Because I feel like Simeon and Anna right now...I believe that God has promised healing. I believe that there will be a day when I will be completely healed and will not have any pain or nausea or health problems. BUT I do not have a guarantee that the fulfillment of that promise will occur in this life. Because I have the hope of heaven, I know that eventually I WILL BE HEALED. At this time of year, when we are celebrating the HOPE of salvation, it reminds me that I can (and should) also HOPE in the promise of being healed. Just as Simeon and Anna did not see the complete fulfillment of salvation in their lives, but were grateful to God for the glimpse of that salvation in the birth of Christ; I feel that this Christmas season is a good reminder of holding onto the HOPE of eternal life where there will be no more sickness or pain.

At Passover every year, at the end of the Seder we shout "Next year in Jerusalem!" That is a reference of hoping for the second coming of Christ and the hope of heaven. I'm saying "Next year OUT OF THE HOSPITAL" in hope of less medically filled year in 2015, but REGARDLESS of the physical circumstances, there is ALWAYS the HOPE of healing.

Merry Christmas! (and Happy Chanukah for my Jewish friends and family!)

Friday, December 19, 2014

Another One Bites the Dust

The title of this post would be referring to yet another medication designed to help my relentless GI issues that I can no longer take...while I don't really want to take it anymore after the events of this past week, it is a bit disappointing and disconcerting that the one medication that was at least making a dent in my nausea is now not an option...

I apologize if I'm sounding like a broken record, but THANK YOU so much for praying for me and Nick and my family. As much of a challenge as it is to be in the hospital, it is reassuring to know that our needs are being interceded for us when we can't or don't know what to pray for ourselves. Hopefully most of you have received an update from either me or my parents at this point, but if not (or if you want more of the gory details =P) here's the short version of what happened.

Saturday evening after the Christmas concert at our church, I ended up being taken by ambulance to the ER for seizure-like tremors, being unresponsive, and having trouble communicating. I was sent home late that night (early Sunday morning),  but when I woke up on Sunday, was still having tremors, speech difficulties, and vision problems along with my more typical symptoms. After talking with my primary doctor's office, we returned to the hospital so I could be admitted for a neurological evaluation.

I do not remember anything about being in the ER Saturday night or anything from Sunday. Monday when I did become more aware of what was going on, I was still having tremors and speech difficulties. Unfortunately, even with my clear neurological symptoms, it was a battle with the doctor assigned to my case to get a neurology consult...because of my complex medical history, she wanted to attribute my symptoms to my known conditions and did not feel the need for further testing. We spent almost 2 days trying to convince her that the reason we were there was because these were NEW symptoms that I had not experienced before and my primary doctor had sent me there so I could get a neurology workup...it was extremely frustrating to have her not listen to our concerns, especially since I was already having trouble communicating...

We finally decided to contact my specialists in MN and WI and get their opinions. I had seen both of them within the past month, so we sent videos of my tremors and speech issues. Both doctors responded quickly and said I needed an EEG to rule out a seizure disorder. The doctor in the hospital finally relented when we showed her the email from these doctors.

Originally she had wanted to discharge me Tuesday, since she felt there was no need for a neurological assessment, but when we continued to push for it, she agreed and the EEG was scheduled for Tuesday evening. It was disappointing to know I'd be there another night, but we were glad to get the test scheduled. Little did we know how thankful we would be that I was still in the hospital later that night...

Around 9pm when neurology still had not come to do the EEG, we figured it wasn't going to happen until the next morning. Shortly after Nick left to head home, I started complaining of a severe headache and became unresponsive again. I don't remember anything that happened during this event, but my mom and Nick said it was a definitely a God-thing that we were still in the hospital because we probably would have ended up back there had we been sent home. I wouldn't (or couldn't) swallow any medication, so I did not take my evening meds Tuesday night. They gave me some IV medication to see if it would resolve the headache, and thankfully, it eased the headache, stopped the tremors, and knocked me out for the night.

When I woke up Wednesday morning, I was fine. No tremors, no headache, no speech problems...it was a complete 180. We started trying to connect the dots...and finally made the connection! Last week I had gone back to MN with my mom for a follow-up appointment. Unfortunately, I left one of my medications there so I had not taken it for 2.5 days prior to returning to Ohio. Saturday when I got back, I took a double dose of that med (per doctor's orders). I was on that medication the entire time I was in the hospital until Tuesday night when the headache prevented me from taking it. Wednesday I was fine.

We looked it up online and found that while it's a rare side effect, seizure-like tremors and speech difficulties can be a side effect for this medication. We called my doctor in PA who put me on the medication and explained the situation. He agreed that it is a very rare side effect, but he had seen one other patient who also had a seizure and speech problems after increasing the dose....scary to hear, but we were thankful to have an answer!

I did finally get the EEG Wednesday morning, and it was normal...which we expected since by then I had no symptoms...figures...oh well, we were thankful to have figured it out even if the doctor in the hospital still didn't completely agree. I have been home since mid-day Wednesday and have not had any neurological symptoms come back! Yay!

Unfortunately, all my GI issues are still present and seem to be even worse right now. Like I mentioned at the beginning of this post, this medication was the first one to make a dent in my nausea...we were increasing the dose because it still was not completely effective. Because I had such a severe reaction, I cannot take even the lower dose anymore...so we are back to square one in treating my stomach.

I am very thankful to be out of the hospital, and very thankful to have found the reason for those neurological symptoms. It was a scary week, but there were glimpses of God's hand on the situation even when it felt out of control. Again, thank you for your prayers and for walking through this difficult season with us. I wish I could tell everyone in person how grateful we are for the emails, texts, and prayers that really do make a huge difference when it feels like everything is going wrong.

Less than a week until Christmas, and I'm looking forward to celebrating with lots of family (yay for great parents and in-laws!) and NOT in the hospital! While I did spend the first night of Chanukah (Tuesday) in the hospital, I've been home since then and Nick is doing fabulously with his Hebrew while reciting the prayers each night when we light the menorah! Happy Chanukah and Merry Christmas!

Thursday, December 18, 2014

Glory and Suffering

Every now and again, there is a song that comes on the radio that seems to really speak to exactly where I'm at. Usually I like to run or get outside when I need to clear my head or pray, but sometimes a song just grabs me and kinda hits me in the face. The Hurt and the Healer by MercyMe is one that is fairly popular right now (at least enough that it's played on the radio pretty often) that I've really connected with recently.

One of the lines in the songs is "where glory meets my suffering." This has felt like my lifeline during this rough season for me, because it's a great reminder that God doesn't leave us alone when we are down. Instead, that is when His glory shines through the pain and meets us where we are at. How amazing is it that God is willing to meet me in the midst of my pain and suffering???? That I do not follow a God who leaves me alone to struggle and then picks me up on the other side, but one who walks beside me and give me strength in the moment. In reality, this line really represents the core of our faith. Jesus (glory) came to earth and left His place in heaven to provide a way for everyone to be freed from sin (suffering). The ultimate representation of God's glory, Jesus Himself, met us in our ultimate suffering of being bound by sin...and because of that we are forever made free...DAYENU! But just that act of salvation was not enough for God, so He continues to extend His glory for our suffering daily, hourly, every minute that we are suffering. What a God we serve!

A few weeks ago in the car, my mom and I were talking about this song, and she mentioned that she had thought the line was "when glory NEEDS my suffering." Well that kinda changes things...why would a God who is glorious need (or want) us to suffer? For I while I thought about this (even after we determined that's not actually what the song says...haha). Does glory need suffering? What does that mean about God?

And I came to the conclusion that ABSOLUTELY glory needs suffering. It couldn't be glory without it. If you walk into a room in the middle of the day and turn a light on, it doesn't get that much brighter. BUT, in the middle of the night, that same room will be completely illuminated when the light is turned on. I think that's a great representation of how our lives look...if everything is always perfect and nothing is going wrong, God's glory CANNOT shine brightly. When things are good, we can become dangerously close of losing sight of how brightly God's glory can shine. When things are dark and suffering is all we can see so much that darkness is overwhelming, it's in those moments that God's glory is able to shine all that much brighter.

Does that mean that God wants us to suffer? NO. But the reality is that we live in a world full of pain and suffering. We will not have perfect lives as believers, if anything the struggles may seem all that more real and challenging because we are more aware of the battle between our flesh and the spirit. So when that suffering comes in our lives, while it may be some of the most trying and difficult times to get through, God IS always there in the midst of those dark moments. And I do believe that it is in those moments that He can shine the brightest.

Right now, LIFE IS HARD. I'm not going to sugar coat it or pretend anymore that nothing is wrong. But at the same time that life is hard, GOD IS GOOD, and His glory is shining brightly. I may not see everything now, but I do believe that God has a purpose and that he can use my struggles to bring glory to Him. Not sure how it's all going to play out, and absolutely I hope I reach the end of this season of suffering soon, but until then, I know that my hurt and my Healer are coming together in accordance with God's plan.

The question that is never far away
The healing doesn't come from being explained
Jesus please don't let this go in vain
You're all I have
All that remains

So here I am
What's left of me
Where glory meets my suffering

I'm alive
Even though a part of me has died
You take my heart and breathe it back to life
I fall into Your arms open wide
When the hurt and the healer collide

Sometimes I feel it's all that I can do
Pain so deep that I can hardly move
Just keep my eyes completely fixed on You
Lord take hold and pull me through

So here I am
What's left of me
Where glory meets my suffering

I'm alive
Even though a part of me has died
You take my heart and breathe it back to life
I fall into your arms open wide
When the hurt and the healer collide

It's the moment when humanity
Is overcome by majesty
When grace is ushered in for good
And all our scars are understood
When mercy takes it's rightful place
And all these questions fade away
When out of the weakness we must bow
And hear you say "It's over now"

Jesus come and break my fear
Wake my heart and take my tears
Find Your glory even here
When the hurt and the healer collide

"The Hurt and the Healer"

Sunday, November 30, 2014


I've actually written this post a couple times...but I couldn't seem to find the right words to say what I wanted to say...

This post is designed to be an update for everyone who has been faithfully praying for me and my family during this rough time. I wish I could thank each of you who has been praying in person and tell you how much your prayers mean to me and my family. The Bible talks about prayers and faith being able to move mountains...well, I think at times getting in to see these doctors and making appointments is more difficult than moving mountains...but those mountains have been RUNNING away...for the latest mountain movement going on, check out my previous post about the appointment in WI.

Galatians 6:2 says, "Bear one another's burdens, and thereby fulfill the law of Christ." Thank you for coming alongside me and my family during this rough time and surrounding us with your prayers and support. It is still difficult for me to ask for prayer, but please know that we appreciate every prayer that has been offered on our behalf. There have been many times when I've been feeling really down, and I've gotten a text or call or email right when I needed it. THANK YOU!

I've tried to be consistent with this blog and update regularly as we get back from various doctor appointments and such, but hopefully this post will give a nice quick (or not so quick as the case may be...) overview of everything that's going on.

At the moment we are still in a waiting phase...unfortunately. It seems like most of this journey lately has been waiting...waiting to see if new medicines will work, waiting for test results, waiting for appointments... This past month I had 2 big appointments, one in MN and one in WI. Right now, we still do not have any answers...we are going back to MN in a little over a week for a follow-up appointment and to go over test results. We should be hearing back from the doctor in WI about the same time. So hopefully we will get some answers SOON!

What we do know is that I more than likely have some sort of systemic issue going on. What that is, we are still not sure. That is what all this most recent testings is about. Both doctors feel confident they have a good idea what may be going on, so we are doing a bunch of testing to either confirm, yes, I do have it, or no, we can rule this out.

We have been able to confirm that my autonomic nervous system does not work properly. This can manifest itself in multiple ways including problems regulating my blood pressure, heart rate, body temperature, blood flow, digestion, etc. Anything that is supposed to be "automatic" may not function correctly in my body...This is likely caused by one of the systemic issues that I am being tested for, so hopefully we will know more soon.

The biggest issues I've been dealing with lately have been stomach/intestine issues, allergic reactions, and black outs/passing out. I have gastroparesis which essentially means my stomach (and top part of my intestine, in my case) are partially paralyzed and do not work properly. Again, getting back to the autonomic dysfunction, my stomach is unable to handle normal digestion after eating. For those of you that knew I was in the hospital back in October, it was due to severe GP symptoms that I could not control on my own at home. I'm working with a specialist in PA trying to find the best way to treat these symptoms until we know the actual cause. The allergic reactions can range from as mild as itching, a rash, and a few hives to full anaphylaxis. I know some of my triggers but not all. These reactions can come on suddenly or appear slowly and progress to more serious. As we move toward a diagnosis, we are hoping to be able to better identify my triggers to I am able to avoid them and my emergency medications. The passing out is another result of my autonomic nervous system not working properly and my body being unable to regulate my heart rate and blood pressure normally. Again, the hope is that as we figure out the underlying cause of these issues, we can treat that as opposed to continuing to treat the symptoms.

So if you haven't caught the underlying theme here, we are waiting...still...but more hopefully now than in the past few months. We should be hearing back with some of the test results in the next few weeks and will be traveling back to MN in a little over a week for a follow-up.

Please continue praying! While we are (hopefully) making progress, there are still a lot of unknowns. Specifically, we are asking for prayer regarding these tests. Both doctors feels confident that we are moving in the right direction for diagnosis, but we need lab confirmation. PLEASE BE PRAYING FOR POSITIVE TEST RESULTS. We are desperate for some closure and also to be able to treat the underlying issues effectively instead of just attempting to manage symptoms.

I hope this post wasn't too rambling or confusing, and I hope that it is encouraging for you to know how your prayers are being answered and are sustaining me and my family through this rough season. We are so thankful for your support and hopefully will be reaching some sort of resolution in the next few weeks. Stay tuned!

Tuesday, November 25, 2014

God Moments in WI

Sometimes God just amazes me. Maybe that should be more often, but there are just sometimes where I am left in awe of how God orchestrates things that we never could have seen coming.

My parents and I are currently driving back home after my neurology appointment in WI. This appointment was so different than we had anticipated, and it was totally a God thing. 

First, I was never supposed to see the doctor that I did. Back in July I had met Dr. Chelimsky at a conference and he encouraged me to send my records to his office and see if I could get an appointment to see him. I went through all the effort of collecting referrals and my records only to be told he was no longer accepting new patients but I could see one of his colleagues. I made the appointment but with the intention of cancelling later because I really wasn't interested in seeing a doctor I knew nothing about. About 2 months after the appointment was made, I received a call from the neuroscience clinic in WI saying the doctor I had been schedule to see was going to be out of the office that day and they were going to put me on a wait list for any cancellations. I told them I was not local and would not be able to come in on short notice. They came back and said I could keep the appointment but would have to see a different doctor...guess who that ended up being...Dr. Chelimsky! So we felt like we should keep the appointment because it just seemed so weird that things worked out for me to actually be able to see him. We really felt like maybe God had something in mind, so less than 2 weeks after getting back from MN, we headed to WI.

The next God thing that happened was just as crazy. While we were in with Dr. Chelimsky, we found out that their clinic doesn't schedule patients with doctors until they have had autonomic testing in their lab. I hadn't done ANY of that. I had a tilt table test (TTT) about 4 years ago, but no testing at all in their lab. That I was even able to schedule an appointment with ANY doctor there was definitely a God thing because that was completely out of line with their procedures.

Because of that, Dr. Chelimsky decided to see if I would be able to get any testing done since I was already there, and he didn't want to make me travel again if we could avoid it. Turns out the testing lab just HAPPENED to have a cancellation right when my appointment with Dr. Chelimsky was finishing. I was able to go right over to the lab and get complete autonomic testing done...REALLY?!?! When does that EVER happen at a major research facility??? It takes MONTHS to get in for testing and to see these doctors and I was able to see the doctor I wanted without the required testing and get impromptu autonomic testing...how is that NOT a God thing?? I even told the nurse who was hooking up all the testing that and she agreed! =)

The appointment and testing went well. Dr. Chelimsky was great and personable. He had already gone over the records that had been sent ahead, and had specific questions and assessments that he did in his office before sending me over for testing. Based on some of those questions and my performance on the assessment tasks, he said he felt that I may have an acquired mitochondrial issue. He is doing some genetic testing and vitamin testing that I think may shed some light on that, and he wants me to try a "mito cocktail" of supplements to see if I see improvement on those.

The autonomic testing was a bit rough...I think it would be interesting to see how a "normal" person reacts to these tests...I was EXHAUSTED and COMPLETELY wiped after the testing which consisted of the very intense lying on a bed and breathing! haha, oh well...I had the Deep Breathing Test, Valsalva, QSART, and 5 minute TTT. The Deep Breathing Test is exactly what is sounds like. I had to breathe in and out in time with a metronome for 10 breaths. About halfway through I was starting to struggle but did manage to complete both trials. The Valsalva is where things got interesting. I had to breathe out as hard and long as I could against resistance and reach a certain exhaling force for heart rate and blood pressure variability assessments. I did okay on the first trial, but almost passed out on the second trial and the results showed my BP and HR bottom out right about when I started to black out. 

The QSART was the easiest of the 4 tests because I didn't have to do anything. No breathing required! Well, I supposed I was breathing during the test, but they point was NOT to make me pass out like some of the other tests. This test was assessing my peripheral nerve response to an electric stimulus to see if I had any nerve damage. This test was also normal which was good! This confirmed that I do NOT have any form of neuropathy and my autonomic dysfunction is a central issue. Even though that sounds kinda bad, it's actually good that it's a central issue and not peripheral.

The last test was the 5 minute tilt table test. This test is pretty simple but absolutely HORRIBLE. Haha...this was the second TTT that I've had and it was definitely worse than the first one. After 10 minutes of baseline measurements, the table that I was lying on was tilted to almost vertical, so I was placed in as close to a standing position as possible. I was not allowed to move or do anything other than report my symptoms or answer the doctor's questions. It was only 5 minutes because we did not have a lot of time, but that seemed to be enough time to generate a good amount of symptoms. In a "normal" person, the heart rate should increase and blood pressure will probably drop slightly, but the body is able to compensate and within the first minute, vitals will re-stabilize to close to baseline measures. I didn't do that...my blood pressure was all over the map, high then low then high again, and my heart rate almost doubled and stayed elevated. I felt HORRIBLE for the entire 5 minutes and for a good bit after they lay me back down. It took me another 10 minutes or so to recover from being vertical. 

So what does this all mean? Well, like I mentioned earlier, we were able to rule out any peripheral issues contributing to my autonomic dysfunction. So that is an answer to prayer! No neuropathy to deal with and we at least know my issues are centrally related. The Valslava confirmed that I do have what's called Reflex Syncope in the neurology world (Neurocardiogenic Syncope to cardiogolgists) which we had known since my previous TTT in 2010. There is still a bit of a gray area regarding the TTT because typically this test is at least 10 minutes. Based on my vitals, I have Postural Orthostatic Tachycardia Syndrome (aka POTS) but we're not sure if it counts since it was so short. The fact that my blood pressure was all over the map also indicates autonomic dysfunction, so we are pursuing treatments for that.

I'll be doing a comprehensive update in another day or two, so I don't want to spend a ton of time on that right now, but just to say that this trip was well worth the 16 hour drive, battling the snow, and not getting back home until 2 am. I would highly recommend seeing Dr. Chelimsky. He knows his stuff and looks at the whole picture and not just his specialty. Even though he is a neurologist, he asked about my GI issues and skin issues and allergies and asthma. He spent the time to look at me holistically as a unique person and not just another patient coming to his lab. 

But more than I was impressed by Dr. Chelimsky and his lab staff, I am so much in awe of how God has been working in these situations. The circumstances around this trip were so completely mind blowing that there is not other explanation than God was opening doors for us to walk through. We are hopeful that in another few weeks to months we will have some definitive answers and can begin actual treatments instead of just guessing what *may* help. 

Thank you so much for your prayers and please continue praying! God is definitely in the midst of our trials and making himself known and giving us encouragement along the way.

Tuesday, November 18, 2014

2 Down, 1 To Go

If you've read previous posts on my blog, then you know I absolutely LOVE seeing new doctors! HA That couldn't be farther from the truth! I HATE HATE HATE seeing doctors for the first time because I never know what they are going to say, if they are going to discount my symptoms, if they are going to tell me I'm too healthy for them, if they will tell me to come back when I can't walk anymore (yes, actually been told this by a doctor)...let's just say I'm NOT A FAN! But such is life with chronic illness, I can't escape doctors...so as you may know after reading my previous post, November is kinda a big month for me considering I have 3 BIG appointments. Especially after my recent experience in the hospital, it is safe to assume I've been a bit nervous for these appointments. But now 2 are down and only 1 to go, so I figured I'd go ahead and update how those went.

Dr. Afrin
For anyone in the mast cell community, I'm sure you've at least heard of Dr. Afrin. He is one of the guys who literally wrote the book (or maybe the case is still writing) on mast cell diseases. Once we started walking down this path of me possibly having a mast cell issue, I went ahead and made an appointment with Dr. Afrin (after much persuading on the part of my mom and husband). This was back in July, and only having to wait until November for an appointment seemed quick! Oh the life of having unusual chronic conditions. 

We flew out the day of the appointment and had been told to plan to stay 3 days for testing. Dr. Afrin is actually in the Hematology/Oncology department at the University of Minnesota, so my appointment was in the cancer clinic. It was a bit weird walking in there because I was the only person under about 65 years old in the waiting area. I did end up seeing at least one other mast cell patient while I was there who was not older, but I was DEFINITELY the minority. 

The appointment itself was really good! We saw his nurse first, and she was really good also. She was very up front saying that he was running a bit behind but the reason was that he wanted to take as much time as necessary with all his patients because he recognizes that many travel from quite a distance to see him. She also reassured us that we could expect the same level of attention and time when he did get to me. As someone who traveled 800 miles to see him, it was very nice to hear that he was willing to spend the time with each patient to be thorough and not miss anything. We did wait about 30 minutes after my scheduled appointment to see him, but it was well worth it! Plus, I think I've waiting that much at other less specialized doctors for only a 15 minute appointment...

Dr. Afrin did not disappoint and was just as good as other people have said. He walked in with a 3 inch stack of papers that I soon came to find out was my medical records. He had already made notes and comments on them, so it was clear he had already spent some time on me before I met him. He had a fellow with him who was doing a rotation under Dr. Afrin. I was asked if I would be okay if the fellow sat in on the appointment to hear Dr. Afrin's comments. I was completely fine with it, and ended up really being glad he was there  for a couple reasons.

The first is because it helps educate the next generation of doctors. Right now, so few doctors know about or understand mast cell diseases. If these fellows and residents can be exposed to these conditions before they are released to practice, then hopefully diagnosis can be easier for people walking this road after me. Even one fewer year of struggling can make a huge difference in someone's life with chronic illness. 

The second reason I liked having the fellow there was because I think I got to hear some things I might not have otherwise. Dr. Afrin was really good about talking about what he was looking for and going through my entire (3 inch stack) medical history that was sent to him by my doctors. Because he was training up the fellow though, there were times he would make comments to the fellow about things he would expect to see in mast cell patients and then show blood work or test results in my history that confirmed what he had just said. Or he would make comments about the challenge it can be to diagnose and possible misdiagnoses and again, find those in my records. It was kind of like having a commentary of the appointment that was fun to listen to.

Anyway, like I said before, He was VERY thorough. He went page by page through my entire medical records that had been sent from my doctors. Then he asked me to give him the play by play of when things started, how they progressed, and where I had been and was. THEN he did his own medical history by asking me specific questions about symptoms and reactions and my medical journey.

At the end of the appointment he basically said, he is fairly confident I have Mast Cell Activation Syndrome but cannot make an official diagnosis without lab results. So he sent me to the lab for many, many, many (did I say many) tests. They were all blood work and urine so nothing invasive or painful. But be forewarned, if you struggle with hypovolemia or anything like that, be ready to feel rough! I have blood volume issues, and they took 16 vials of blood...I'm not that big, so percentage wise, that was a good bit of my blood. I was definitely struggling for a few days after. He also had me do a 24-hr urine test which is why we had to be there for the extra days. This test is SUPER sensitive and has to be kept refrigerated at all times. We spent most of the next day just hanging out in our hotel room so I could be close to the mini fridge we had in our room. Although I'm pretty sure I set a record for least amount of urine produced for a 24-hr sample...

And that's basically it! I handed in the urine sample the next day and we were done. Unfortunately it takes about a month to get results back, so we are in a waiting game... I am following up with him in mid-December to discuss the test results and figure out where to go from there. So now we are just praying for positive results so we can have some closure and can move forward in targeting treatment to the core of the problem rather than just continuing to treat the symptoms.

Anyone who is on the fence about whether or not to make the trip out to Minnesota to see Dr. Afrin, I HIGHLY recommend it. Like I've said, he is very thorough, knows his stuff, and really does seem to want to help. He is more than willing to work with doctors in your area, in fact, that is one of his stipulations, that you HAVE to have a local doctor that he can coordinate with. So if you're unsure, GO!

Dr. Mabee
So since I need a local doctor to coordinate with Dr. Afrin, I had to set up another appointment locally to find someone I could work with. This time I was able to get a referral from a friend about a primary care physician that has been really good for their family and willing to work with them. That appointment was earlier this week. I was nervous about this appointment, but since I had talked with my friend about him, I was hopeful that it would be a good appointment.

And it was! There was nothing extraordinary about it or anything, but he listened and wanted to know what doctors I was working with and what I wanted him to do. He said he would be more than willing to work with me and coordinate with my specialists and be the point person for me. It still seems a bit weird since I don't really know him and I'm used to working with my primary care doctor in VA, but I definitely need someone I can go to here when things get bad. So another successful visit!

One more doctor visit this month and then back out to Minnesota in December. We are trying to get as much in as possible this year because between my two hospitalizations and other tests and appointments, I've well exceeded my out of pocket maximum. May as well get all this testing and such done now while insurance is covering it before the new year rolls around. Next appointment is with a neurologist that I met at the Dysautonomia International conference this past July, so hopefully I will have another positive review next week. Stay tuned!

Saturday, November 1, 2014


Back in July I kinda hit a breaking point and finally (after much persuading on the part of my parents and now husband) made appointments with some specialists to try to figure out what's going on. These specialists were legit specialists so as usual, it took MONTHS to get an appointment. One was at the beginning of October in Pittsburgh with a Neuro-gastroenterologist. The other two are coming up this month in Minnesota and Wisconsin.

I'm both excited and terrified for these appointments. I am very hopeful kind of out of necessity and these visits will help sort things out and help us find better ways to manage everything. In a couple weeks I'll be in Minnesota for 4 days for an appointment with Dr. Afrin who literally wrote the book on mast cell diseases. When reading some of his articles, I could be the poster child for mast cell activation syndrome, so I'm looking forward to actually get an official diagnosis if that is what's going on. If it's not, my guess is that Dr. Afrin will know, and we can at least cross that off the list. The Wisconsin appointment is with Dr. Chelimsky who is a Neurologist. I met him at the Dysautonomia International conference in July which prompt me scheduling with him. I was very impressed when I met him in July, and he seemed to be really willing to work with patients and not tell them they are making stuff up or crazy.

And that's what I'm nervous about. Even though I've had a really good experience with Dr. Levinthal so far and both Dr. Afrin and Dr. Chelimsky get fantastic reviews from their patients, there is also some part of me that goes in expecting yet another doctor to tell me I'm crazy, or there isn't anything wrong, or (my favorite) I'm not sick enough to see them yet...Until I actually meet these doctors I know that I'll be kinda nervous, but I'm hoping and praying that we get some answers either way about what is going on.

I still have more than a week before we leave for Minnesota, but I can definitely say I've started thinking about it often. Another reason I'm a bit nervous is because we are flying to MN. The last time I was on a plane was on the way back from Mexico after a mission trip with my church. I had what we are now pretty sure was an anaphylactic reaction to some lady's perfume. That was REALLY scary, especially when they almost diverted the plane to Mexico City because I was reacting so badly. At least this time we are in the US, but that doesn't take away the nerves I have for flying. Especially since I've had a few more similar reactions in less enclosed spaces, so who knows what will happen inside the plane...On the bright side - I'm heading to see a doctor about these reactions so maybe it wouldn't be so bad if I had a reaction...oh the irony of traveling halfway across the country because of unknown medical issues. At least we are driving to Wisconsin...

So that's what's up for my November! Traveling all over the Midwest for doctor's appointments and hoping to get some resolution for all my issues. Not to mention teaching 3 undergraduate exercise science class, working on my dissertation, moving into month 2 of being married, and just managing life in general...not busy at all...of course not =)

Monday, October 13, 2014

Rough Times

I started this blog post a few days ago, but couldn't figure out how to put what I wanted to say into words on "paper." If you read my last post, you know I had been having a rough couple of weeks with multiple ER visits. That all came to a climax last Saturday and I was admitted to the hospital for most of last week. The post I started was going to be about my experience in this hospital...but I couldn't seem to get it right.

Every time I started writing I couldn't find the right words to express my thoughts or feelings related to my experiences in the hospital. It was not a pleasant experience, and I was discharged with little to no resolution to the problems that sent me in to the ER in the first place. But I am HOME and incredibly grateful for that. But like I said, the more I tried to write a post about being in the hospital, I couldn't come up with the words to express what I wanted to say. It's been a few days, and I feel like the reason I wasn't able to write anything earlier was because there is something more important I want to blog about. 

While I was in the hospital, my mom and I listened to a sermon by Mike Meyers from Reston Bible Church called Black Water. He spoke about his experience working as a diver in pitch black water with only the voice of his tender in his ear guiding him. He used that as a parallel to our lives with the really tough times and suffering we experience being our "black water" and us having to rely on God as our tender to guide us through when we can't see.

Increasingly over the past few months, my health issues have been black water for me and my family. I like to think of myself as a positive person, but lately seeing the good in the midst of the trials has been a challenge. I do believe that I will be healed because God promises that, but that doesn't necessarily mean that it will be in this life. I have a hope for eternity which is good, but when the black water closes in here, sometimes the darkness feels overwhelming. And sometimes, while I'm surrounded by the black water, I just can't seem to hear the tender's voice...

So what? I can't hear God, and you know what, sometimes when I'm feeling especially overwhelmed, I don't even know how or what to pray. Do I pray for healing knowing God has already promised it? Will my asking change His mind for when He will take away my health issues? Should I even be praying for healing? Maybe God is using my struggles to make a different for eternity in the lives of people I come in contact with...if that's the case, I don't want to miss out on how God is going to use me...so...how or what do I pray for??? 

Sometimes all I can do is close my eyes to keep the tears from escaping and say "Please, God" even though I don't feel like I'm getting any response at all. Please what? I don't know, but hopefully God does.

So what's my point with all this? I feel like I don't hear the tender and I'm wandering lost and alone in the black water. But, I'm not alone and even though it might feel like an eternity, God IS STILL THERE, HE IS STILL GOOD, AND HE STILL LOVES ME. That's all I have to hold on to, and you know what?? DAYENU! At Passover every year, we have a Seder. One part is going through and saying Dayenu after each small blessing and deliverance God gave to the Israelites as they were leaving Egypt. Dayenu means "it should have been enough." So we are declaring that God doesn't owe us anything, and every small victory/deliverance He gives us beyond salvation is an incredible blessing. If I am never healed, Dayenu, because God has already given me more than I could ever deserve.

That being said, I was in a really rough spot just a few days ago. Physically I was still feeling the effects of being in the hospital, but mentally and spiritually I was really struggling. I was on the phone with my mom for a while and at one point I told her that I knew I had physical issues that need to be met, but at that moment, I desperately just needed some encouragement. I had no idea what type of encouragement or how it should look, but all I knew was that I felt like I was in a downward spiral and needed someone to reach out and grab my hand to get me out.

And God is so good in spite of my mess. Nothing changed in my life, I still felt like I couldn't pray, didn't know how to approach God or what to say, but later that day, God gave me the encouragement I needed. I was running a few errands and ended up switching the order I was going to do them in at the last minute. I was purchasing some gift cards from a local restaurant for some friends of ours and while I was waiting, my pastor and his wife walked in to have lunch. It was those few moments while I was talking with them that I felt like I heard the static of the tender’s connection in my ear. My circumstances didn’t change, I didn’t all of a sudden see the light breaking through the black water, I wasn’t miraculously delivered, but I did get reminder of the hope that He is there and I’m not alone. It wasn’t much, I might not have actually heard the tender’s voice in the black water, but the static of that connection reminded me that He is there and is keeping His eye on me even if I can’t see anything.

So that’s where I’m at now. Physically things are still pretty rough, and I’m at my wits end. I have another appointment with my GI in Pittsburgh in a week and a half, and I’m just trying to get there. I’ve been trying a couple new medications one of which I have to call him about because I’m getting some side effects that I cannot function with. The other one I’m not sure is working…so we are waiting for this next appointment to get here and hopefully we will be able to get some resolution at that point.

To finish off this blog post, here is a funny facebook post I saw the other day that I thought was fitting:

“On particularly rough days when I’m sure I can’t possibly endure, I like to remind myself that my track record for getting through bad days so far is 100%, and that’s pretty good.”

Friday, October 3, 2014

UPs and DOWNs

Okay so more like an UP a bunch of DOWNs and another UP. Hopefully I won't have too many more downs in the near future because I'm seriously getting worn out!

So what's been going on in my life?? Well, here is the first UP...I'M MARRIED!!! Woot woot!!!!

I think I posted on a previous post that I was getting married in September, and now it's happened!! It was a great day (minus the hurricane force winds...) and it's been fun to be married! So far so good, despite the crazy first two weeks we have had as a married couple...

And that bring me to the DOWNs...apparently we are taking the "in sickness and in health" part of our vows literally...I had been struggling quite a bit with my gastroparesis symptoms leading up to the wedding. Thankfully the wedding and our 2 day honeymoon went great!!! No major issues and we were able to just enjoy a few days away together. Unfortunately, our first day home (last Wednesday) ended very badly. I had been on an almost completely liquid diet before the wedding because solid were causing me so much trouble. However, a friend of ours who made cupcakes for the wedding had made a special batch with "Kylene safe" ingredients. I didn't eat any at the wedding but she had sent them home with us and we had them in our refrigerator. I broke down Wednesday morning and decided to try one of them...I had HALF the cupcake and even that little bit did NOT sit well. I was so nauseas, in so much pain...I was curled up on the couch in the fetal position just praying for it to pass. I ended up calling my husband (of 3 days) and he made the decision to come home from his first day back at work and take me to the ER. Long story short, it was a good visit and we found out a few things that night that were very helpful:

1) I am SERIOUSLY sensitive to morphine. I always knew I was sensitive to medications, but even half of the adult dose made me close to unresponsive...later in the week doctors were amazed that a quarter of a normal adult dose was enough for me.

2) Zofran (which used to be my go-to medication for nausea) is not really working anymore, at least when things are really bad. Twice I had to ask for phenergan to just take the edge off my nausea.

3) I was seriously backed up! The most solid food I had eaten in over a week was the half a cupcake, but when they x-rayed my stomach, my entire bowels and colon were full. They sent me home with a prescription for magnesium citrate and said that should clean things out.

So that was the first visit on Wednesday of last week. The relief lasted about 2 days. By Friday afternoon, things started going downhill again...up until last week I had been pureeing vegetables to try to get nutrition while not being able to eat much solids...well that backfired and we ended up back in the ER Friday night. This time the doctors did a CT scan which showed a seriously distended stomach and upper intestines. They were concerned about a possible obstruction and we had a consult with the surgeon on call, and suggested admitting me for monitoring, but we decided that wasn't the best option for me at the time and came home. I got another prescription for magnesium citrate (my favorite...) which at least gave me something to do the next day =P

The weekend was okay despite taking the mag citrate on Saturday and being grounded =P Monday we had evening plans, but later in the afternoon I felt things coming back again...ER trip #3 on the week =\ At this point I had all the nausea meds I needed (including phenergan) but I was so nauseas I wasn't able to take anything by mouth. So back we went for more IV meds. I managed to make it to Thursday which brings me to the next UP.

I had an appointment with a GI specialist at UPMC in Pittsburgh on Thursday which I had really been anxious about. I've had some back experiences with doctors up until this point, and definitely get "white coat syndrome" when I meet a new doctor. I saw Dr. David Levinthal, and I HIGHLY r

ecommend him! He spent about an hour and a half with me and was very thorough. One good thing about the ER visits from earlier in the week (thank you hubby =P) was that we had current imaging to show him. Dr. Levinthal was able to look at the CT scan and show us how full and distended my stomach was and the distention in the upper part of my intestines. He was definitely very knowledgeable and really seemed to care (which is a really important piece of the puzzle for me). I didn't feel like just another patient but that he would actually be involved in my care and helping me manage things. Unfortunately there really isn't a quick fix with things like this...we are trying a couple new medications and I have a consult with a dietician who specializes in gastroparesis and food allergies. Hopefully this will help us start moving forward!

So yesterday's appointment was really good, but unfortunately today's work week appears to be ending on yet another DOWN. I help out with a Fellowship of Christian Athletes group at a local high school on Friday mornings, and right at the end of the meeting this morning I passed out. =\ Usually I can feel when I'm getting toward that - I get dizzy/lightheaded/shakey/etc. and can sit or lie down before I actually pass out. Today it came on suddenly. My vision started going black and the next thing I remember is waking up on the floor. Thankfully I was able to recover (at least enough to convince the EMTs and teachers) so I could drive home, but it really threw me off. Whenever I pass out I always end up kinda shakey and feeling off for the rest of the day, so that's how today has been.

Hopefully I'm on the road to another UP since I've definitely had my share of DOWNs in the past two weeks. But that being said, I am so thankful for these first few weeks being married and my amazing husband!! Shout out to my amazing husband who truly has jumped right into marriage and embraced the "in sickness and in health." Hopefully the next few weeks are WAY less eventful than these first two =)

Tuesday, September 9, 2014

Invisible Illness Awareness Week: 30 Things

So it's invisible illness awareness week...I don't typically do a whole lot for these awareness weeks/events/promotions mostly because I don't always feel like I know what to do/say. Plus, I'm still struggling with actually being a part of the chronic illness community. It's one thing to know I don't feel well and be trying to figure out what is going on and another thing completely to actually admit "I HAVE A CHRONIC ILLNESS." And I think that is the part that is hard for me. Nevermind that it's been 7+ years of dealing with SOMETHING, I still feel weird admitting that despite how I look, things are NOT okay (hence INVISIBLE illness awareness...)

BUT, in spite of that, I figured that I would at least post something on this blog about Invisible Illness Awareness Week since I'm not really sure anyone reads this anyway (feel free to comment if you do =P). Here is my 30 Things post!

1) THE ILLNESS I LIVE WITH IS: If you can figure it out, let me know! Unfortunately I still feel like I'm in the diagnostic stage...despite having been diagnosed with multiple conditions (POTS, NCS, GP, etc.) we're not sure if any of those are complete/legit diagnoses...currently pursuing possible digestive motility issues and mast cell activation syndrome...will keep you posted!

2) I WAS DIAGNOSED WITH IT IN THE YEAR: see above...but started being diagnosed in 2010


4) THE BIGGEST ADJUSTMENT I'VE HAD TO MAKE IS: realizing that just because I used to be able to do something doesn't mean I still can. I used to be so crazy busy all the time, and I thrived on that! Now I find that I have to carefully plan out my schedule or I'll set myself up for a big crash.

5) MOST PEOPLE ASSUME: that nothing's wrong! I work really hard to keep people from knowing that I'm sick unless I choose to tell them.

6) THE HARDEST PART ABOUT MORNINGS ARE: knowing that they only last so long! Haha, I know most people struggle in the mornings, but I find that I do well at the beginning of the day and fade as the day goes on. Unless I'm having major stomach issues, then the hardest part about mornings is waking up still nauseas and in pain from the night before.


8) A GADGET I COULDN'T LIVE WITHOUT IS: my cell phone, as much as I hate to admit it, I do like being able to use it when I'm stuck on the couch or in the bathroom in pain or sick.

9) THE HARDEST PART ABOUT NIGHTS ARE: not being able to sleep because of pain or nausea and knowing I have to be up early the next day for teaching or research meetings.

10) EACH DAY I TAKE ____ PILLS & VITAMINS (NO COMMENTS, PLEASE) It changes depending on my symptoms and what we may be trying at the time...

11) REGARDING ALTERNATIVE TREATMENTS I: am willing to try things as long as there isn't
a huge risk and it makes sense...at this point I'm willing to try most things since not a whole lot of conventional medicine seems to be helping.

12) IF I HAD TO CHOOSE BETWEEN AN INVISIBLE ILLNESS OR VISIBLE I WOULD CHOOSE: probably still invisible, sometimes I get frustrated when I don't know how to approach a situation where I have to let someone known and am not sure what to say since I've always looked okay, but at least I get to decide who I tell.

13) REGARDING WORKING AND CAREER: I'm doing it! Currently working on my dissertation for a PhD in Exercise Physiology and applying to universities for professor positions.

14) PEOPLE WOULD BE SURPRISED TO KNOW: that I need my sleep. Everything else starts getting worse if I'm not able to get a good night's sleep on a regular basis. And I've been this way since I was little!

15) THE HARDEST THING TO ACCEPT ABOUT MY NEW REALITY HAS BEEN: that my medical issues do not effect only me, but that my family and close friends are also along for the journey. This is probably the hardest thing for me, knowing that the choices I make do not just effect me but those I love the most.

16) SOMETHING I NEVER THOUGHT I COULD DO WITH MY ILLNESS THAT I DID WAS: travel to Mexico on a mission trip with my church. It was an incredible experience, and I am so thankful that I was able to go!


18) SOMETHING I REALLY MISS DOING SINCE I WAS DIAGNOSED IS: being able to just go out to eat with friends and family and not have to worry about whether I can eat something at the restaurant or how they will handle my food allergies.

19) IT WAS REALLY HARD TO HAVE TO GIVE UP: being able to pack and go on road trips without having to coordinate food and schedules ahead of time so I can manage the trip.

20) A NEW HOBBY I HAVE TAKEN UP SINCE MY DIAGNOSIS IS: never really had a hobby...still don't...but I do enjoy puzzles.

21) IF I COULD HAVE ONE DAY OF FEELING NORMAL AGAIN I WOULD: not sure because I don't feel like I am unable to do things that I want to do. I usually have to adjust things or take into account how I'm feeling, but for the most part I feel like I am "normal-ish."

22) MY ILLNESS HAS TAUGHT ME: that everyone struggles with something, and you don't always know what is going on beneath the surface...most battles are fought privately.

23) WANT TO KNOW A SECRET? ONE THING PEOPLE SAY THAT GETS UNDER MY SKIN IS: "I wish I was skinny like you!" Oh really, you wish you had a stomach that rejects solid food and causes major pain and nausea after eating...want to trade??

24) BUT I LOVE IT WHEN PEOPLE: let me know they care and are praying for me but don't make a big deal out of me being sick. I'm still me! Sometimes what I want the most is just to be a part of whatever is going on even if all I can do is sit on the couch and watch.

25) MY FAVORITE MOTTO, SCRIPTURE, QUOTE THAT GETS ME THROUGH TOUGH TIMES IS: Isaiah 40:31 - Those who wait upon the Lord shall renew their strength; He will raise them on wings like eagles. They will run and not grow weary; they will walk and not faint.

26) WHEN SOMEONE IS DIAGNOSED I'D LIKE TO TELL THEM: There are good days and bad days. Try to remember the good ones and don't hold on to the bad ones. Don't let your fear of having a bad day keep you from trying things and doing what you enjoy. God is still good and loves you more than you can know.

27) SOMETHING THAT HAS SURPRISED ME ABOUT LIVING WITH AN ILLNESS IS: that it can be so much more draining than just physically. I find that there are days that I am not only physically exhausted but spiritually and emotionally and mentally tired, too.

28) THE NICEST THING SOMEONE DID FOR ME WHEN I WASN'T FEELING WELL WAS: giving me a stuffed (plush) stomach and intestine! Haha, not sure if it's the nicest thing EVER, but definitely something that made me smile. The ones inside me may not work well, but at least my stuffed ones are cute to look at.

29) I'M INVOLVED WITH INVISIBLE ILLNESS WEEK BECAUSE: if not me then who? If someone dealing with this stuff on a daily basis isn't willing to get the word out there, then it's not going to happen.

30) THE FACT THAT YOU READ THIS LIST MAKES ME FEEL: ??? no idea, if you're my mom (who I know will read this =P) then you probably already knew most of this...anyone new to my blog, welcome! Hope my posts aren't too jumbled or boring! Feel free to leave comments!

Wednesday, September 3, 2014


I cannot believe it's already September!?!? I know I promised another post back in the end of July/early August, but life has been so crazy, obviously that didn't happen...I don't even remember what I had been planning to post about then...OOPS! Oh well, so much has been going on, I have more than my fair share of topics to blog about...

Back to it being September...crazy, right?? This fall is a big time for me for multiple reasons:

1) My birthday! Coming up at the end of this week =) I'll be turning 25, so hitting my quarter-life crisis. Not sure what I'm going to do yet to celebrate being a quarter of a century...ideas/suggestions are welcomed!

2) Even more exciting than my birthday, MY WEDDING!! Looking back over previous posts, I realized I haven't ever mentioned getting engaged. So I'll mention in now...I'm engaged! (and have been for a while =P) We are getting married in about 3 weeks, and I'm super excited!! And nervous...but mostly excited.

3) I'm applying for jobs! I have officially begun working on my dissertation after passing my comprehensive exams in May. This fall I'm applying for professor positions for next year which is crazy?!?! Sometimes it feels weird to think that this time next year I'll (hopefully) be teaching at a small college somewhere. It's even crazier when twice in the last two days I've been mistaken for a high school student...hopefully I can figure out how to look older so the interviewers don't think I'm a confused student when I apply!

4) I've got some big doctor's appointments coming up...good and bad, I think. Good because hopefully we will finally get some answers and actually figure out the reasons I'm having problems, but bad because I at the point where I need these appointments. If you haven't read any of my other blog posts, you might not know this about me, but I HATE (HATE HATE HATE HATE) going to doctors, especially new doctors. But I've gotten to the point where I don't know that things will get better on their own anymore...so I'm scheduled to see one specialist in October and one in November. I don't want to put all my eggs in one basket or put unrealistic expectations on the appointments, but I am praying that these doctors will have some insight that will help me manage and treat everything that is going on.

So that's what's up! It's not like turning 25, getting married, applying for jobs, and trying to manage/treat chronic illness is anything to keep me busy, but that's why I haven't posted in a while! I hope to be back a bit more consistent, but no promises...at least now you'll know why if I go a few weeks without a post!

Friday, August 1, 2014

Struck down but not destoryed

So I actually started this blog post a few days ago. It was up beat and positive and excited to share all the fun stuff that has been happening. And I will still post that one when I finish it, but for now, I have other things that are more frustrating right now than the other events are exciting =\

My symptoms have started to get worse again, and I'm at the point where if I don't try to sort things out now, I may be on the road to crashing hard... A few weeks back I went to the second annual Dysautonomia International conference. It was great! (Post coming about this specifically.) At the conference, I met a doctor who I thought would be the perfect doctor to schedule an appointment with and try to get in to see...she is primarily a GI doctor but also deals a lot with autonomic dysfunction issues and orthostatic intolerance. Yay! Unfortunately, she can only see pediatrics...of course...She recommended that I try to get in to see her husband who is a neurologist that specialized in orthostatic intolerance and other symptoms linked to that. Yay! So I figured I would give that a try.

I don't know if I've ever mentioned it on this blog, but I HATE GOING TO DOCTORS!! New doctors especially, but I just dislike seeing medical people. It's not that I'm in denial that anything is wrong (ok, maybe to some extent I think that if I don't schedule appointments then I can't possibly be feeling that bad...) but that I'm tired to being told that they don't know what to do or that there's nothing wrong or that I'm too healthy and to come back when I can't walk anymore (yep, actually been told that by a doctor)...That being said, I do have a few doctors that are fantastic! They have been with me for years and seen the progression of my symptoms and have been willing to try different medications or write referrals or just do anything they can to help me. There's just a couple problems... 1) They are all back near my parents and I'm 6 hours away (although as my mom so subtly points out, I could move back home and solve that problem =P) and 2) they are the first to admit they really don't know what to do to help me other than help me get in to see a specialist.

And there's the next problem...everyone is a specialist!!! Which is great when there's only 1 issue...if you have stomach problems, you see a stomach doctor; if you are having dizziness and passing out, you see a neurologist; if you're breaking out in hives and not breathing, you see an allergist. But what about when there are multiple problems??? Each doctor only looks at the symptoms that are relevant to his specialty and diagnoses some random disease that explains what he is familiar with...but is that really what's going on?? I'm not going to be convinced that I've (plus all the other people in the same boat as I am) all of a sudden developed all these random rare diseases...that's why they are rare...statistically, there's a 1 in whatever chance of getting some disease, and an even smaller chance of having 2 diseases, and we could keep going, but you get the point...statistically, this just doesn't make sense. Shouldn't someone be noticing this pattern and saying "Wait a minute! We've got all these patients that are getting 3, 4, 5+ diagnoses of supposedly random conditions. Plus, all these patients seem to be getting a lot of the same diagnoses...maybe there is some underlying cause?" LIGHTBULB moment if I ever saw one...

And that's where the doctors at the conference fit in. They are among the few that are actually taking a step back and trying to see what is actually the underlying cause and not just being satisfied with treating symptoms. It was refreshing to hear doctors say "I don't know" instead of making up some answer when it was clear they really didn't know. The doctors at the conference were willing to say that there was still a lot of research being done, but at least they care and are trying to do what they can with the information they have now.

Anyway, the one doctor recommended I try to get in to see her husband and also gave me the name of another doctor that could work as well. So I spent a week or so collecting records and paperwork and faxing forms all over the east coast trying to get various doctors to send my records. Today I heard back from the doctors staff to schedule, and I was excited! Until they told me he is no longer accepting new patients...they offered me an appointment with one of his colleagues, but it wasn't until I realized I wasn't actually going to be able to see him that I realized how much I had been hoping this would work.

I feel like on a day-to-day basis I do a decent job of managing my symptoms and making everything look normal to the people I work with and my professors and students. But my family and closest friends see the ups and downs that are happening all too often now. I try to keep a good attitude and realize that everything has a purpose in life. I look back on previous posts and journals and prayers that God has answered. I remind myself of His faithfulness regardless of how I feel or what the circumstances are. I pull out verses and encouraging notes that I've been given over the years. But sometimes it just feels like too much. Sometimes I'm just overwhelmingly disappointed. I trust that God is in control. I know He won't give me more than I can handle and is with me every step of the way, but that doesn't mean that some days, like today, I wish it didn't have to be this way.

Now that I've had some time to get over the initial disappointment, I'm okay. I DO believe God is in control and maybe this is His way of directing me to a doctor that might be even better for me in my situation. I don't know why last week there were appointments available and this week he's not taking new patients...but I won't let this keep me from pursuing finding the right doctor to help me. As much as I dislike doctors, I'm not just going for me. I'm going for my family who is walking this road with me and cannot do anything but be there. More than anything I hate that my struggles have to effect the people I am closest with. As much as I just want to check out and pretend everything is okay, I've realized in the past few months that it doesn't make things better (duh). But that as hard as it is for me to struggle with these things on a daily basis, my family has to watch...and that's why I WILL NOT allow myself to shrink away anymore and pretend things are fine. It's not fair to them. They have been there for me when I've needed them the most, so I want to do what I can on my end to keep them from effecting them any more than it already has.

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair.
2 Corinthians 4:7-8

Thursday, June 5, 2014

Cooling Vest Review

I just returned from the annual conference for the American College of Sports Medicine (ACSM) that I go to each year for my PhD program. This year it was held in Orlando, FL. Now Ohio this time of year is actually quite nice. I don't know if I blogged about the weather this winter at all, but if I didn't, I should have...it was SO COLD! We had a few days where school was cancelled, not because of too much snow, but because of too much COLD. It got down to -40 with the windchill...definitely too much cold...

Anyway, since we are now in spring, the weather is pretty nice. It's probably going to get hot soon (more on that later) but for now, I'm enjoying the warm temperatures and sunny days. But Florida at the end of May...completely different story...it was in the 90s every day with plenty of humidity. It was a bit of a challenge. Our hotel was about 1/2 mile from the convention center and just under a mile to restaurants and such. That meant a lot of walking in the heat. I enjoyed the walking, but definitely was feeling the effects of the heat during the week. It really made me start to question how I was going to manage this summer...because while Ohio typically doesn't get quite as hot as FL, the building I work in on campus is not going to have air conditioning at all for the entire summer. I'm not sure whose brilliant idea it was to fix the venting system in the SUMMER when we actually need it rather than the winter or even early spring when it's not an issue...

 I was nervous about how I was going to manage just knowing we wouldn't have any air conditioning, but being in FL kinda gave me an idea of what it could be like. I tend to overheat fairly easily and don't always notice until I've already gone too far. Plus, while I try to drink well throughout the year, it's more challenging to stay balanced with hydration in the summer, especially considering I don't ever get thirsty. So all those factors combined=potential for major crash if I wasn't careful.

And now to the review I mention in the title of this post!

One of the benefits of attending the ACSM conference is the exhibit hall where many different vendors have a booth/table set up. A lot of them have lab equipment designed for research and stuff like that, but there's also a lot of cool stuff for athletes and students and professionals in the field. One of the vendors this year was Cryovest. They are a French company and have designed a cooling vest to be worn by athletes before and after competitions or workouts. The purpose is to help reduce the core temperature of the athlete either before exercise to allow for a more intense workout or to help the athlete recover faster by cooling the body more rapidly following the exercise bout. However, another population that the vendor actually mentioned when I was talking with him was in populations of people who have difficulties regulating their body temperature!

When I heard that I was excited to give the vest a try. I had actually looked online for some cooling vests before, thinking that might help in the summer when I like to be outside even though it can be a challenge for me. But the vests tend to be kind of pricey and it was hard to tell how they would fit. It was important that the vest wasn't super bulky because I don't want it to be obvious that I'm wearing something. I'm usually comfortable with the people I work with on a regular basis knowing I have some medical issues, but I have to teach a couple classes this summer and run exercise programs, so I really didn't want it to be super obvious...this vest is great!

It's very adjustable with velcro straps on the sides. There are 8 ice packs that get inserted on the front and back of the vest (4 on each side) and velcro into their specific pockets. It's very low profile and can be worn under or over clothing easily, plus it's machine washable! I like wearing it over a t-shirt and under a long sleeve. (I know that seems weird to wear a long sleeve if I'm worried about overheating, but I actually still tend to feel cold a lot even when it's hot out...yay dysautonomia =P) I've worn it a couple days already and am very happy with it! It's cooled down a bit now, so I won't need it for the next few days, but it's nice knowing I have that option now.

I think the online price is somewhere around $185 not including shipping but not sure exactly because it's a French company. When looking at other vests I've seen, I think the price is comparable, even though I know it's a bit pricey. The big benefit that I see is that because this vest is designed for athletes it's very lightweight and low profile. The last thing runners want is to be burdened by a thick, heavy vest. Once I have put it on, I can go through my day and hardly notice I'm wearing it, plus it's not super obvious to OTHER people that I'm wearing it either. I would definitely recommend it to anyone looking for a cooling vest to help manage their temperature during the hot months of the year or during exercise!

Saturday, May 10, 2014

The Hivities, Canaanites, and Hitties in my life

I know I haven't done much of an update lately, so I thought I would do one now...I tend to not feel like sitting down and writing a blog when I'm feeling good, so in this case, consider no news good news! Mostly...

I think I can always come up with something that's not going as well as I would like. If my stomach has been cooperating, chances are my MCAS is acting up and vice versa. Case in point: this past week I had 2 smoke incidences. The first happened while I was at one of my classes Wednesday night. During the break in between sessions I had been sitting with a friend just talking. A guy walked by who had very obviously been smoking. I started flushing and coughing almost immediately. My friend I had been talking with happened to be an ER nurse so she left the room with me to make sure I was going to be okay. Once I got away from the smoke I was fine, but the smell was so strong in our classroom that I ended up deciding to leave class early so I didn't get exposed to any more smoke. Episode 2 happened at school on Thursday while I was studying for my last final (!!!). Apparently the powers that be decided that we needed motion sensing lights (not new carpet after the toilets overflowed last year...new lights...) and the guys who were installing them would leave about every 30 minutes to go smoke. Again, REALLY??? I get that there is no smoking allowed in the building, but when smoking is allowed on campus, SMOKE GETS IN THE BUILDING. Sorry, mini-rant, but really. I don't think people understand how much of an issue this can be for some people....I get that some people want to smoke and that is there decision and I respect their choice even if I don't agree with it, but there needs to be some sort of regulation because there is a huge health risk (not just for me) with smoke being in the buildings. I couldn't even sit in my office on Friday because there was still a huge smoke smell lingering...

Anyway, enough of my ranting. Thankfully I was able to catch them early enough that I could get away and not going into a full reaction. I guess I'm learning something! But honestly, it can be frustrating. I feel like I'm standing on a balance board and trying to stand in the middle and keep either end from touching. When I get my GI issues "off the ground" the MCAS seems to flare or if my POTS symptoms are low then I'm having evening long dates with the porcelain throne...I just want to get everything in balance and feel like things are under control.

And there's the kicker...I was praying about this the other day. Not that God would take it away because I believe strongly that He is using this is so many ways to bless me and others in ways I can't fully see right now. I wasn't complaining (at least not that time) but asking for strength because I was feeling so worn down. And I did ask God why there always had to be something. I'm not questioning why I deal with these medical issues, but sometimes it just feels overwhelming. I didn't get an answer that day...but a few days later I was reading my Bible and came across these verses:

"I will send terror ahead of you to drive out the Hivites, Canaanites, and Hittites.But I will not drive them out in a single year, because the land would become desolate and the wild animals would multiply and threaten you. I will drive them out a little at a time until your population has increased enough to take possession of the land."
Exodus 23:28-30

God is telling the Israelites that He will not forget His promise to give them the land and is going to drive out their enemies for them. Except He is not going to do it all at once...why? Because He knows they wouldn't be able to handle it  yet. There were not able to manage all the land God wanted to give them on their own yet so He was going to give it to them little by little and would prepare them step-by-step.

Now if I take this verse and apply it to myself...my GP can be the Hivites, my POTS the Canaanites, and MCAS the Hitties. God is saying He is not going to take them all away at once. Maybe He knows I'm not capable of dealing with whatever may come if I didn't have these struggles. Maybe He knows that without reminders of my weakness I would become prideful and strive to do everything in my own strength. Maybe He knows that if I was healed instantly (just like if the enemies were driven out immediately) I would have less of a reason to rely on Him for my daily strength. Maybe He knows how much I need to see His faithfulness over and over again, rather than all at once because I'm human and I forget so easily.

What's the common theme there?? MAYBE HE KNOWS - no maybe about it. The most incredible part of those verses for me is that God explained to the Israelites WHY He wasn't going to drive out their enemies all at once...and He didn't have to. God doesn't own us any explanations. He is God and we are not, end of story. But God loves us deeply and because of that love, sometimes (not always) gives us a glimpse of His plan. For us now it might be through the stories in the Bible like this one. It gives me a reminder that HE KNOWS and that is enough. 

I don't know why I can't seem to get my balance board perfectly balanced, but I know the One who can balance it for me and more importantly be there with me. I have seen times when things are in sync and it's great! I have also had times where it seems like I'm hitting the ground on every side and feeling like I'm falling off the board. But there is beauty in those times too...because while I'm flailing my arms wildly realizing how little control I have, my God is always right there to catch me and hold me in His arms.

Monday, May 5, 2014

Race Report: Hall of Fame Half Marathon

Sorry it has been so long since I've posted...life has been crazy! Lots has happened and maybe I'll have a chance to update on everything but for now I'm just going to do a race report for a half marathon I ran last weekend.

I went into this race a bit unsure of how things were going to go because I hadn't run more than 10 miles all year...and I had only run 10 miles ONCE. When I signed up for this race it wasn't to actually race it, but I had been hoping to be able to run well...NOPE! Plans change and I went into it hoping I would just finish and not have any issues during or after.

This race was in Canton, OH, and my parents came out and met me for the race. That was super fun, and I was really glad to see them. My mom and I used to run/workout together every day (literally, 6+ times a week). I miss that sooooo much, so being able to run races with her is really special. I was so looking forward to that I was able to more or less overlook my seriously low mileage and just hope for the best!

Packet pickup was okay. It was held at the Pro Football Hall of Fame and that was the theme for the race. Finding the numbers and shirts was easy, and they had a mini NFL style combine set up on the football field you could go through. Then all participants got free admission to the HoF which is where the "expo" was. I put expo in quotes because it was not much at all. There were maybe 4-5 tables in a small room in the HoF and then a tent outside with race merchandise. This was a first year race so hopefully in the future it will be better, but we were seriously disappointed with the expo.

Getting to the race was a bit of a pain; we had to park about 15 minutes away and ride school buses to the start. Going TO the race was fine, there were plenty of buses and it was early in the morning so there was very little traffic. Trying to the leave the race was another story...for whatever reason the organizers decided to have the bus route CROSS the race course. It took us about 40 minutes to get back to the cars once we got on the bus to return because we sat for quite a long time to let runners pass. Now I just finished a race myself so I'm not arguing that the runners shouldn't have had the right of way...I'm just saying they needed to choose a different route for the buses!

The race itself was great, though! As with any race it was a bit chilly at the start; and just like any race I was concerned I was going to freeze...actually it probably wasn't as cold as some races have been, but it still felt frigid at the start. Once we were moving I was more or less fine. The course started and finished at the HoF and ran around and through Canton. In most areas the entire road was closed so all the runners were able to spread out across all lanes of traffic. They had repaved a lot of the course since winter so most places had brand new asphalt for running. That was really good news because when we drove the course maybe 6 weeks before the race, the pothole situation was serious!

There were 2 major parts of the course that stuck out to me before the finish on the football field. The first was around mile 5. The biggest hill on the course was somewhere between miles 5 and 6. It really wasn't much of a hill so the grade wasn't the issue, it was that the footing for this part of the course was on brick...and not smooth brick either...My mom had been dealing with a hip injury and having to watch your step the entire time we were on the brick was a bit nerve-wracking. Thankfully, the brick section was short-lived and soon we were back on asphalt.

The second part that I remember pretty clearly was miles 9-12 (ish). This part was down and back in a really cool park and then past the McKinley Memorial before returning to the HoF for the finish. The park was really nice and it was cool to see the other runners on the opposite side. It was nice having this section toward the end of the race, too, because once we finished the best part of the course, we were on our way to the finish.

The race ended back on the football field at the HoF. It was a good post-race celebration with lots of music and snacks for the runners. The race was a decent size, but didn't feel too crowded at the finish. We were all able to meet up easily after the race and find what we needed.

Overall, I really enjoyed this race. It was a first year event, so hopefully in future years some of the glitches will be fixed! I would definitely run this race again (especially if it means I get to see my parents!!) and maybe one day I'll be able to actually train and RACE instead of just running. We will see =)

Thursday, March 20, 2014


It's 3:30 am and I wish I was sleeping...but since I'm awake due to GP pain I figured I would update my blog. So at least all you reading my blog (i.e. Mom) can enjoy my midnight post even if I wish I was sleeping instead =P

On the breathing side of life, I've been doing well! Yay! Definitely something to be thankful for. Actually, now that I look at the date, it's been exactly 1 month since I was in the hospital. I did have a short period about a week or two after I was discharged where I started having coughing at night only, but that appears to have subsided. It was weird...maybe anyone who has experienced something similar can comment on it, but my symptoms were odd and very unusual for me. I would start coughing pretty hard between 6-7 pm and struggle through the night with constant coughing and an irritated throat/airways. I had to start up my nebulizer treatments again just at night. During the day I was pretty much completely fine...I was running and going about my daily life with no issues...until the clock struck 6 pm and I turned into a pumpkin =P This happened for about a week, but has since settled down.

I had a follow-up with the pulmonologist that I saw while I was in the hospital which was a good appointment. Other than waiting for 3+ hours (yes, you read that right...3 HOURS) before I actually saw him, the visit was productive. He wrote me a prescription for more of the mast cell stabilizer to use in my nebulizer in case I started having another reaction to something, and we discussed an "action plan" of sorts for when I feel like I've hit a breathing trigger and how to handle that. He also prescribed an anticholinergic to use that is also supposed to be helpful for MCAS, so I am going to start that and see how things go. During my run just a few days ago, I was feeling encouraged and thinking that I finally feel like I'm moving to more of a maintenance phase in managing all my issues rather than still trying to sort things out...

And then yesterday happened...

Overall, on the stomach side of things, my GP has been really well managed. Other than having a few issues right after being in the hospital, I've felt like I have been able to eat more or less normally and not had many issues. This week even I was doing well, up until yesterday afternoon/evening...that's when things went VERY wrong. I'm not good with the "rate your pain on a scale from 1-10" things that doctors always ask...I always either say 6 or 4, if I'm hurting bad I say 6, if I'm only hurting a little I say 4...but last night I was probably an 8. I had to go to a class I was taking at church and considered not going, but ended up trying to tough it out. Note to self - poor life decision...I was sitting in the class, shaking and trying not to start crying because I was in so much pain. I don't remember a single thing the speaker said last night, and I ended up leaving after an hour. Walking to my car, I couldn't even stand up straight I hurt so bad. I hurt in my stomach, back, and chest, I was extremely nauseas, dizzy, and lightheaded and kind of nervous I might pass out. When I got home I just wanted to curl up into a ball in bed, try to sleep it off, and hope it was gone when I woke up in the morning...since it's 3:30 and I can't sleep I think I can say my plan did not work as I had hoped...at least not entirely =(

Anyway, about 9 or 9:30 the nausea finally got the best of me and I became reacquainted with what I ate for dinner on Monday night...and yesterday was Wednesday...I guess some of what I eaten had digested, but there was definitely enough left that I could clearly identify the Chipotle chicken and rice...I know it's cliche but it definitely tasted better on Monday than last night =P I don't really know what set off this reaction or why it was so severe and came on so quickly...I guess something started getting backed up and when things stopped moving everything bottled-necked until my stomach said ENOUGH. After I threw up I did feel a bit better, but I'm still hurting a bit which I guess is why I can't sleep right now...tomorrow (today?) is going to be a long day...but at least Friday is the start of spring break!

I try to be positive about everything even when it's tough because I know it could always be worse. I AM grateful that I don't have that pain every time I eat. I AM thankful that I am recovering well from being in the hospital and am back to running at least some. I AM encouraged at that we are making progress in managing a lot of my symptoms. But it's still frustrating when things like this happen...especially after I was just feeling so good about handling my breathing issues.

Something I read or heard a while back gave me a really cool perspective on things and definitely helps in times when I'm really struggling. I don't remember the exact quote but is was something related to how our trials help keep our focus on heaven. A lot of times people always seen trials as being from Satan designed to hurt or damage us, but what if sometimes they are not. What if sometimes the hard times in life are blessings from God? Laura Story sings a song called Blessings and one of the lines in it says "What if my greatest disappointment or the aching of this life is the revealing of a greater thirst this world can't satisfy?"

I was reading the story of Abraham preparing to sacrifice his son Isaac because God asked him to. I'm sure Abraham didn't want to, how many parents want to kill their children? But he went anyway. My pastor at church uses the example of a bicycle wheel to explain where we put our importance. God should be at the hub of that wheel and all the spokes represent everything that we do which should come from loving and focusing on God at the center of our lives. But many times we tend to place something else at the center of that wheel.  What if the reason God asked Abraham to sacrifice Isaac was because Isaac was becoming the hub of Abraham's wheel? What if God wasn't trying to punish to hurt Abraham, but to make sure his focus was in the right place? Maybe, just maybe, God sometimes uses trials to make sure we are not losing focus of what truly matters.

What if my struggles are not attacks from Satan, but blessings from God? Without these trials, maybe I would easily lose focus of God and place something else at the hub of my bike wheel. Maybe God sends these challenges to me to remind me that this world is not my home. I know I have a tendency to get extremely focused on things and lose sight of the big picture at times. Maybe God knows that without these medical issues, I would replace Him at the center of my wheel with something else, so He keeps me weak so I can be strong in Him. What if the aching in my life is God's way of keeping my thirst for heaven instead of getting attached to the comfort of this world? I don't think God was asking Abraham to sacrifice Isaac because He wanted to hurt him or see him struggle. I think God knew Abraham was placing his one and only son at the hub of his bike wheel...and He loved Abraham too much to let him lose focus and miss out on all that God had promised.

Maybe my trials don't mean that God is letting Satan run all over me, but that He loves me too much to let me have control...what if my disappointment in not being healed or the aching and pain of GP are blessings that remind me I live in a fallen world so I don't get comfortable here...I don't want to replace God at the center of my bike wheel and forget that this is not my home...maybe all this is God's way of reminding me that I have the hope of a new, perfect body when I get to heaven for all eternity. When I look at it that way, how can I not feel BLESSED that God loves me too much to let me forget that I was created for Him and not this world. I AM blessed because my trials point me back to God...just don't ask me how blessed I feel later today when I'm feeling the lack of sleep from being awake at 3:30 in the morning...haha, just kidding, now it's 4:45...

We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering

And all the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near

What if trials of this life are Your mercies in disguise

We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your word is not enough
And all the while, You hear each desperate plea
And long that we'd have faith to believe

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not,
This is not our home

It's not our home

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near

What if my greatest disappointments or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise.

Laura Story - Blessings

Thursday, February 20, 2014

Day 4...

So just like every year at Passover we say "Next year in Jerusalem" and every year we are still in Virginia...yep, STILL in the hospital. But things are definitely on track (so far) for me to go home TODAY. And I mean it this time! =)

I saw the PA for my one doctor (not the pulmonologist) about 11:30 am. She was very helpful and said she would make sure all the medicines were in line for me so when the pulmonologist gave the okay, I would be able to leave with what I needed. Although, she did say that since my peak flows were still hovering around 200 (40% of my predicted) that it wasn't likely that I would be going home that day.

I didn't really like hearing that, but honestly, when I took a step back to evaluate how I was feeling, I don't think I was quite ready. I was still coughing pretty regularly and my chest was still feeling tight. When my mom and I were talking, she asked if I felt ready to leave and I told her that I really just wasn't sure. I think that in itself was enough of an indication that I needed to stay.

I saw the pulmonologist again about 3:45 in the afternoon. He again said it was my call if I wanted to go home, but suggested another day or 2 (really did not like hearing that 2...) to get another couple rounds IV steroid, stay on the IV fluids, and get my peak flows up. I decided that we would give it one more day and assuming I wasn't any worse today I would go home even if things hadn't changed too much. I want to get as much benefit as I can from the treatments they can give me here in the hospital, but I also know that the longer I stay the more exposure I get to other germs and potential triggers.

Shortly after the doctor left, my nurse came in and said that I would be moving to a different floor. Apparently I had been on an observation floor since I had been admitted and there was a time limit on how long you could stay there. So I was moved down a floor. Initially I was sharing with an older lady, but when the nurses realized my mom wanted to stay, they moved me to a private because overnight guests are not allowed in semi-private rooms.

As always, I was nervous about switching floors and nurses. My nurses on the observation floor had been great and my mom and I had trained them well with all my issues =) Haha, so I was a bit nervous having to change nursing staff. But just like everyone I've seen here, they have been great. The first nurse I had on the new floor asked a lot of questions and want to learn more about my various issues and ways that we treat them and how she could be help me keep improving. We probably spent a good 30 minutes or so just talking with her about POTS, MCAS, GP, food allergies, asthma, etc. It was really cool to have a nurse who wanted to learn more, and it gave me a way to help pave the way for future patients who may come through this hospital with similar issues. Like I've said before, as much as I don't want to always be going on and on about all my health issues, it's times like that where I can help educate someone else that may be beneficial to other patients that makes me grateful that I can be a part of raising awareness and helping others get better treatment in the future.

It was actually pretty funny later that evening when the nursing staff changed from the day nurses to the night shift. My nurse that we had talked with spent a good 10 minutes probably talking with the nurse who was coming on for the night shift just debriefing him on my case and what was going on. My mom and I could hear every word because my room is right next to the nurses station. We were impressed with how much the day nurse remembered from what my mom and I had told her and how thorough she was communicating that to the new nurse. He was great too and when he was leaving this morning said he enjoyed having me as a patient because I was low key and not high maintenance.

Last night was a good night =) I was able to go 4 hours between treatments consistently and even had to be woken up for the midnight treatment. I had minimal coughing and actually slept pretty well! My peak flows were still around 200, but the respiratory therapist doing my treatments said it's typical for peak flows to be lower at night because sleeping suppresses breathing. This morning I had a treatment about 8 am, I was able to get my peak flows up to about 250! That was higher than it had been so far, and based on how I was feeling and breathing, the respiratory therapist said he would give the okay if the doctor asked. That was definitely good to hear!

So now we are just waiting to see the doctor. My nurse paged him and hopefully he will be by soon and we can start the discharge paperwork. I am SO ready to get home. Yesterday morning as much as I wanted to leave, I still felt like I wasn't quite ready physically. Today, I'm definitely ready! I'm not back to 100% yet, but moving that direction and at the point where I should be able to manage things on my own at home. The nurses and doctors have been great, but I'm ready to GET OUT OF HERE!!!!! Haha, so for real this time - "Next post from my apartment!!!"