not the A you'd want in May

Influenza Type A with a side of bronchitis

What???

Are you kidding me????

Tear. Frustration. Fight.

No kidding, I knew I felt bad. I knew something wasn't right. I had no idea it was the flu... in May! Who has time for the flu? Who has time for the flu and bronchitis in May??? I had things to do, tests to give, papers to grade, and most importantly - treasured final days of time to spend with my dear students. Five of those days - gone in a snap - to the flu. 

a bigger deal than I thought

I didn't think it was such a big deal. I bumped my leg on a chair in the classroom during math. It seemed minor. That evening, it was hurting more than I thought it should, but I shrugged it off. It continued to seem to get worse. It was painful to walk. Within a couple of short days, the pain was bringing tears to my eyes. My leg was hot and ridiculously ugly. I happened to be seeing Dr. Olson, so when she asked her usual, "anything else going on", I decided to show her.

Day One

Day Two

Afternoon of Day Two

She gasped when I pulled up the leg of my pants. She went to get help from Kaci and another doctor. She immediately wanted full details. This is a much bigger deal than I wanted it to be. It seems a pretty severe infection decided to set in where I barely bumped my leg. The imuran has been stopped until further notice and she wants me to stop in daily to have it checked. I certainly won't be wearing skirts anytime soon.

Bending the Results

I'll take good news in any form, any time I can get it! 

I got the call today. The blast cells aren't gone, but they have decreased since the last blood draw. That in itself is wonderful, hope filled news. 

So once again, I am thankful for this miracle life I get to live each day!

No thank you

Sometimes I really just want to politely say, "no thank you" when facing life. I'm sure everyone does. It would be nice to forget it all for a while. I still believe that one day, I'll have that. I'm holding on to the dream that one day I'll be a healthy person who only goes to the doctor for that yearly physical or even better, for starting my family...

one day...

For now though, I suppose I'm facing another giant. I got the email this week that blast cells appeared on my labs again. This time they were at a high percentage on two blood tests. I was told to wait until Thursday morning and have the labs drawn again. She will let me know the results and next steps by Monday.

deep breath...

I had the labs drawn this morning. I hate to admit that I'm not as ok as I want to be. It's easier when I'm with my students. I get involved with them and my mind doesn't wonder as much. It still stinks, a lot. Everything in me believes that things have not gotten this much better in the last few months just so I can be diagnosed with leukemia.

Right?

Right! That's what I must hold on to. I do know that I am loved. I am loved so very much and whatever happens when I get that call, we'll be able to handle. It just would've been a lot easier to have replied, "no thank you" and have ignored that email than to be waiting here now, not knowing.

Remission???

Remission

What a beautiful, breathtaking word! It's going through my head like a song on replay. Remission, remission, remission! It's a word I've dreamed about and hoped for since Dr. Olson first spoke with me about having Churg Strauss. I always believed it could happen, but it seemed like such a distant dream.

Today, Dr. Olson discussed MY remission! MY remission... I think I will forever remember how she uttered the word with sincere eyes and a hopeful smile. It meant as much to her as it did to me. I'm not there yet, but it's in the picture now. It's truly possible that remission will be mine soon!

Even though it's been a while since I've had an appointment, she's still been devoted to my case. She, Dr. Katial, Dr. Round, & Dr. Maleki have all been discussing my tests and progress. It took eight months for the treatment to begin showing positive effects and now, after one year of treatment, they see feasible hope for remission in my future. She said they believe that with one more year of treatment (assuming I continue to respond) my Churg Strauss will be in remission.

Remission will be mine...........

Normal!!!

It's been 21 days since my fifth and final infusion. I can honestly say I am really feeling better! It's unreal. I don't feel as exhausted as the day goes on. I don't feel like my body is 700 lbs of dead weight. I feel stronger and I actually feel healthier! It's so exciting!

Feeling better was truly the goal. I mean seriously, who doesn't just want to feel good? I know it's on my wish list. Today's news is better than just feeling good though! Kaci emailed and for the first time in.........well, in years, my labs were nearly normal! Oh yes! I said nearly NORMAL! What a great day!

And as if that isn't enough to celebrate, there's more. I went jogging with Jackson tonight. I went jogging and it felt GREAT! I'm going to enjoy this for as long as it will last. I'm hoping this is just the beginning of my new normal.

a year overdue

a pathetic wimp

That's exactly what I've felt like since I started back to work. I was so excited to get to go back to a classroom. Each day I am thrilled for the gift of getting to work with each of these wonderful kids. I missed it so much when I had to go on medical leave last year and honestly didn't know if I'd get to go back. I am thankful for each day of my life.

It has been harder than I ever imagined though. I feel like I am fighting with my body to get through the day. It's become more difficult as the year has gone on. It's been so hard to understand because my lungs have improved soooooo much. Why have I been so exhausted? Why am I such a pathetic wimp?

Dr. Olson referred me to hematologist, Dr. Stabler at University Hospital for my iron deficiency and low blood counts. The veil was lifted as Dr. Stabler matter-of-factly explained everything at my appointment. It's my blood's fault! I'm apparently about FIVE PINTS low on blood. My body has been fighting this blood battle for a year now and I've finally been introduced to a doctor who is ready to help me. She said she can't believe I'm functioning and working on a daily basis. I can't explain how much better this made me feel. I've been beating myself up thinking I'm just puny! The best part is that this doctor not only recognized my problem, but she is determined to reverse it. Yay for good news!

I'm scheduled for five IV iron infusion sessions at the University Infusion Center. I can't wait to feel the positive results! I mean seriously, this is only a year overdue.....   ;)

don't overlook the positives

I know I've had other, bizarre things going on with my health that they say are connected to my Churg Strauss, but I must acknowledge some great news!

My respiratory health has been, dare I say it, WONDERFUL. :) 

It's true! I've been breathing and I have NOT been taken down with horrible infections this fall. Life is good, very good, and getting even better!

Happy Fall!

catching my balance

It's taken some time for the new medicine to kick in and get me back on track. I've been one lucky girl to have someone in this big city who cares about me.

a recovery meal made just for me

rebuilding strength is always easier with loyal guard

Catching my balance has been harder than I wanted it to be. It seems that even simple solutions can take time. In my appointment today with Dr. Fenster he was confident that this medication will be the answer. He said it seemed the syncope and dizziness were being caused by a combination of complications. I have POTS (posterior orthostatic tachycardia syndrome), very low blood pressure, and a problem with the flow of blood from my heart to my brain that is probably all connected to the Churg Strauss and vasculitis. Unfortunately, he said that once POTS is this obvious it's unlikely it will ever completely go away. His hope is that the medicine will keep me from fainting but said I will most likely be dealing with some presence of dizziness for now on. Honestly, I'll still take this as a win. Passing out is pretty awful for me and those around me.

Thankful for Simple Solutions

In the end, this hospital visit was different and help was found. Tonight I am thankful and hopeful.

It wasn't an easy three days for sure. I was fortunate that my care at Swedish Hospital began in the ER with Dr. Marty O'Brian. He's one of the good guys. Unfortunately, one of the few good guys. He recognized there was a problem, admitted me, and started the quest to actually help me. My days & nights were filled with spinning rooms, good & bad caretakers, more fainting, multiple tests, dreaded labs, Lee's calming encouragement, and finally ~ an answer.

Everyone loves a good strobe light test
when the room is already spinning! :)

The hospitalist, Dr. Brigham requested help from a neurologist and a cardiologist. This was obviously a good call, the problem was that she didn't call on MY doctors. I needed help from the doctors that know my history and current treatment plan. Pulling in new doctors isn't always as helpful as one may think. The neurologist had no interest in communicating with Dr. Round. I'm not a pro at confrontation so it just turned into a stressful battle to be heard. My family and Lee were my rocks in this. I'd been beaten down and they gave me the strength and encouragement to fight for what we knew was best for me. The neurologist didn't take it well that I insisted her plan be placed on the back burner, but she finally accepted it. In a wonderful twist of fate, the cardiologist was a friend of my dear Dr. Fenster. Talk about a ray of light in what was becoming a very dark hospital! Dr. Cho consulted with Dr. Fenster and together they discovered that the syncope was being caused by some heart abnormalities. He prescribed and new drug for me that would increase my blood pressure and hopefully keep me on the conscious side of life. :)

Here's to hope & simple solutions.

Who do I turn to?

I am so fortunate to have such wonderful people in my life. I am certain I would not have made it this far without them. The past few days, I've really been leaning on my loved ones and reminded once again how different my National Jewish doctors are.

Saturday, Lee and I were shopping. I felt a wave of dizziness as the salesman was helping him. I didn't think much of it and just leaned against the counter until it passed. Minutes later, we were in the back of the store. Everything the salesman was saying seemed to be mumbled. I remember the room flooding to blackness. I opened my eyes and realized I was on the floor. The room seemed to be spinning and I was nauseous. Lee was next to me, calm, but ready to act. I felt completely humiliated, out of control & confused, but I also felt safe knowing he was with me. We spent the rest of the afternoon taking it easy & quietly hoping it was a one time thing.

Assuming it would be a one time occurrence was my mistake. It happened again at work in my classroom Sunday afternoon. The dizziness seemed to be more frequent. I was feeling more out of control and unsteady. Somehow, I made it through work Monday without incident. Luckily I had a follow up appointment with my neurologist, Dr. Round. When I described the episodes to him, he said he didn't think it was seizure related & recommended that I visit a primary care doctor. I was at a loss. This summer, Dr. Olson and Dr. Pearson spent a ridiculous amount of time convincing me that syncope is a BIG deal. Now it's happening again & I feel like I shouldn't shrug it off. I tried to tell a doctor & it resulted in me feeling like a drama queen. I didn't get it. It seems my body didn't either. It happened again twice that evening. The first time ended in a not so graceful tumble down the stairs into the basement door. I couldn't escape the spinning room even when I was lying down or sitting still. At a loss for a better option, I agreed to go to the ER. After a few tests and many questions, the doctor concluded they couldn't do anything for me. He kindly recommended moving slowly and sent us on our way.

I felt like I was reliving a nightmare from my past. How could this be nothing? What was wrong with me? Was I overreacting? Was I being a baby? What a waste of time and money. I was disgusted, completely frustrated with my body, and a bit scared about it happening again. What if it happened at work? How could I stop it? Who could I turn to for help? I didn't know what to do so I just tried to stay positive. I knew I needed to stay calm and just hope I would be better in the morning.

Unfortunately my powers of positive thinking didn't work on my body. I did all I could to get through the morning carefully. I changed routines so that I could remain as stationery as possible while the kids were with me. Walking to the lunchroom was almost more than I could handle. I felt myself getting dizzier and more unsteady with each step. I knew I just needed to get my lunch from the fridge and make it to the table. I could do that. I opened the fridge door and carefully stooped to grab my bag. The room started to go black and I felt flushed. I remember grabbing the door, taking a slow breath, & chanting in my head that I could make it. I recall slowly moving from the fridge..... I came to surrounded by voices and a huge commotion. It had happened again. I was on the floor in the lunchroom. My head was hurting, I felt confused, and I was freezing cold. There was nothing I could do to make it better. Someone called an ambulance and before I knew it the EMTs were rolling me away. I felt like I was abandoning my students and my responsibilities. I was heartbroken. I just wanted to do my job. I had done everything recommended and couldn't stop it from happening. What hope did I have that this trip to the ER would be any different? I could only think of how worried Lee, Mom, and Dad would be. Being rushed to the hospital from work is a big deal. How could I make this better for them? I just needed someone to help me...

More bloody drama

Bottom line - I'm losing my patience and getting very tired of waiting for this bloody drama to end. It seems that Dr. Kern, Dr. Olson, & Dr. Toribara all agree that it's time for an iron infusion possibly coupled with a blood transfusion. What's the problem you say... Well it's the condition of my body & the cautious nature of Dr. Feiner.  Ugh! Wow do I get sick of being considered delicate. I'm just not down with that label. I wish someone would just take the risk and move forward. My NJ docs are insistent about Dr. Feiner performing the infusions be of the high risks involved with my medical conditions. he refused to move forward until they performed a capsule endoscopy proving one more time that I don't have a source of blood loss.

Can I say I think I might die if I ever have to drink that electrolyte concoction again!?!? Oh yes!! Note the drama queen is coming out in me, but I believe it's true!!!! That stuff is like prison level punishment. I mean, I don't like many drinks anyhow, but that stuff is another level beyond disgusting. Bleh! Bleh! Bleh! There must be a better way for the good of all mankind!

After suffering through the endless liters of torture it was finally time or the test. I must say, National Jewish really is on board with some breakthrough research. I had to swallow a horse pill sized camera with a bright blue flashing light. Then they strapped a belted monitor to my waist. The camera moved through my body throughout the day taking two pictures every three seconds. The pictures were uploaded to the monitor every fifteen seconds creating eight mind-boggling hours of breathtaking footage! ;)

What a Star Trekish experience that was! Now, I just need to wait for the results.......

A Tough Start

It's hard to describe how it feels when something you love, something that's part of you becomes a daily challenge. Of all my experiences, I can easily pinpoint one of the hardest to deserting my career & going on medical leave back in February. I truly thought about my job and students daily even after their last day of school. I missed the victories of students experiencing success, the challenges of finding tailor made ways to meet needs, the comoradery among coworkers, even the early & late hours of the behind the scenes work. I've truly missed it.

That's why when I got the great news my doctors would support me trying the classroom again, followed by a dream job opportunity at a nearby school, I was stoked! I couldn't have been happier. I was brimming with excitement and new ideas for changing little lives!

Reality quickly set in. It's clear my body is going to be my number one enemy. Sadly, this has been the most difficult start to a new year I've ever had. It's almost like having my heart gouged out with a spoon. Mentally I'm excited & the old me. I'm a teacher again. I'm filled with joy! Ideas are constantly popping in my head and I'm anxious to implement them. Physically I'm beyond exhausted. I often feel as though I won't make it through the day. I'm mustering every ounce of strength i have to make it to 3:45. I feel like a failure because I simply can't give my students everything I mentally know would be best for them. It's unacceptable, heartbreaking, even crushing. My body is failing me and I don't know how to handle it.

I still believe things are going to change. I still hope the miracle answers are right around the corner. I still believe I'm going to win this battle on my terms. It's just not in my nature to quit, but it's getting too hard to push through. Something needs to change.

I don't want to doubt that I'm giving all my best to these kiddos!

I hoped these days were behind me

Oh, how I'd hoped. :(
Not yet though. I have to realize I'm still a work in progress & my body and doctors really are doing all they can do. 
I have to believe there's still hope! 

Yep, it happened. I'm back in the hospital. I've been teaching again for a whopping 2-3 weeks & caught a virus that won almost immediately. I can't help but be completely frustrated and disappointed. I thought all the time on medical leave would make me stronger... Give my body the rest it needed to better handle this world of 6 & 7 year olds that I cherish so. 

Here I am though. Back in Rose. IVs, high doses of steroids, antibiotics ~ the whole blasted shebang. I feel so helpless at times. All I want is to work & stop hurting my loved ones with this ridiculous cycle. 

I have to focus on the bright side. That's how I'll get through for now. I have people in my life who love me and doctors who care. There's also hope that this will be a short stay because Dr. Olson admitted me as soon as home meds became ineffective. These are things I can hold onto and be thankful for. 



so thankful...



Adding Dr. Kern to the team

Well it remains true... National Jewish seems to only hire the best of the best. Last week, I had an appointment with Renal Specialist, Dr. Kern. She is another jewel in the NJ crown. She was intelligent, compassionate, and proactive.

The appointment was originally scheduled because there was apparently a concern that I could have a renal tumor. I know! What's the deal with my body mimicking such alarming symptoms? Thank goodness the news wasn't so grave. She believed the problems were being caused by one of my medications. Great news! Even better though, she noticed the lab history on my chart and began brainstorming ways she could help my ferritin/hemoglobin deficiencies. She said those were no numbers for a first grade teacher (oh yes! I'm the newest first grade teacher at Cherry Hills Village Elementary!) and was intent on finding a way to help me feel better! How exciting!

She ordered labs and consulted with Dr. Olson. Unfortunately, my ferritin & hemoglobin levels have dropped again. My iron is 4.2 & hemoglobin is 8 something. Both doctors are leaning toward IV iron infusions, but want Dr. Feiner to weigh in before they add me to the schedule. I'm all for anything that will generally improve the way I feel! So, I guess it's solid.... I have another great doctor on my team! Just waiting for the final decision.

the END of anorexia :)

Oh what a great day! I feel like I've been validated. I know I have a great relationship with my doctors and they can tell that I am honest with them. It's just been so hard knowing that this crazy weight issue has NOTHING to do with my self image and trying to get them to know that's sincere. I've watched the concern on Dr. Olson's face as she checks my weight in the computer. It's heartbreaking. I understand that she only has my health & best interest in mind. I get that. That's why I understood when she had to send me to EDC (the Eating Disorder Center of Denver). Don't get me wrong ~ I was devastated & felt like a failure, but I did understand.

That was the beginning of my victory! I met with a counselor there for about an hour. At the end of the appointment she looked me in the eyes and said she had no idea what was going on with my body, but I did NOT fit any of the criteria for an eating disorder.

Wooooooo  Hoooooooo!! Don't you know I was sooooooo relieved! Now we can FINALLY move forward and focus on problems that are actually REAL!!

All in all nothing has changed with my weight, my appetite, or interest in food in any way. The victory lies completely in the fact that I have officially been labeled NOT Anorexic!

muscle cramps oh my!

My body certainly has a way of throwing curveballs. Just as things are improving with my breathing and my doctors are on course to figure out the syncope problem ~ another symptom starts screaming for attention. I've noticed for the last month that my previously tolerable muscle cramps have been worsening. Crystal, my PT, and Dr. Fenster both have suggested possible remedies for the problem. I've been through each (potassium, magnesium, quinine) only to notice the muscle cramps continue to worsen.

This week has been the worst. Wednesday at rehab, after only a couple of reps on the pilates bench, my calf started cramping again. Crystal started massaging that muscle and the chain reaction started again. Next, the muscles in my side were pulling, then the other muscles in both legs, and on to my arms and back. It was so severe that one of the other PTs tried a procedure called needling. As she inserted the needles into my cramping calf muscle everything seemed to intensify. Apparently this isn't how the muscles are supposed to react to this procedure. She quickly removed the needles as the spasms were unrelenting all over my body. They asked me to stand in hopes of stretching some of the muscles and relieving the pain. As soon as I stood up I felt a flush of heat & nausea rush through me. The room started to blacken and before I could react I was out. When I came to, Crystal was standing over me with intense concern in her eyes. She insisted that it was time to call Dr. Olson.

Rehab wasn't much better Today. The spasms have been almost nonstop creating very achy, sore muscles. It's getting harder to handle and ignore. Dr. Olson called this afternoon to let me know she's ordered labs and is scheduling an appointment with Dr. Maleki. She seems to think it's mostly likely related to the Churg Strauss or something else rheumatalogical. For now, I'm supposed to stop all exercise and limit physical activity as much as possible. Hopefully they'll have an answer for me soon.

Uh~uh, that has to be wrong???

Today was one of those days that I just wasn't prepared for what the doctor would tell me.

"You have seizure disorder."

What?! I was so confused. I've been having seizures??? How crazy is that?! I didn't even know how to respond. I was honestly relieved to have a diagnosis that could be treated, but so perplexed at the same time.

Dr. Round had reviewed the EEG and says it is clear that I have seizure disorder. He believes it is the source of my syncope and blurry vision episodes. He also believes it is connected to the Churg Strauss. The great news is that he believes Keppra (an anti-seizure medicine) will be the perfect solution. I'll start the new meds tomorrow and should notice improvement within the next couple of weeks.

What's wrong with me?

What's wrong with me?
Seriously?

I know I'm strong. And I know it's because of the Grace of God. I know my life is a gift and God does have a plan for me. I know I have outstanding doctors fighting for me daily. I also know I have a huge cast of family, friends, and even strangers praying for me constantly. What I don't understand, is what is truly wrong with me? Throughout this journey, I've never really been one to ask why or to look back in anger. That's sincere. I believe I am me because of my journey and experiences. I really wouldn't change things. What's bothering me now is not the big picture or the daily pain or trials... it's me. Why does my body react the way it does? I really want to know what's wrong with me?

I was told my IQ a long time ago. I know I'm an intelligent person. I can't stand the way I feel like a total idiot when a doctor asks me why I'm losing weight. I don't have an answer. I eat. That's the truth. I eat everything the nutritionist has asked me to eat. I don't know what's wrong with me?? I don't know why I can walk up and down the isles of the grocery store and not find a single thing that looks enticing even when I'm hungry. I don't have an answer. But I know that even though I have no interest, I do the right thing. I eat.

I also don't know why my body continues to be so weak when I take every medicine, go to every appointment, and push myself to exercise daily. I don't know why it seems that when one problem gets under control a new problem surfaces. I just don't know the answers.

I do know that I'm tired, but somehow still hopeful. I know that for so long I've wanted people to be my friend and not be scared of me. I want people to be able to love me without having to constantly worry about my health.

This is one of those days that I'd just like to have some answers. I'm exhausted and for once I'd just like something to make sense.

time to face reality

Time to face it for sure. I need to take a deep breath, gather my strength, and do what I know is best for me. Yep, I said it, ME. It's time to make this real, believe that everyone will understand this is where I need to be, and acknowledge what I've known for a while.

 Denver is where I need to live.

Dr. Olson and I spoke at length today and she was quite blunt with me. (I guess she knew I needed that.)  Things aren't going to be any different if I go back to Lexington right now. Honestly, everyone who knows me has been thinking the same thing ~ just afraid to speak it. The same old cycle will start all over again. I won't be able to be the teacher I want to be, I'll continue to miss days, and everyone I love will continue to worry that one day soon, I'll push my body too far.

Yes, it's tough. Are you kidding? It's really tough. I have an entire state of people supporting me, but I'm here, 1400 miles away alone with my dog. But now I'm finally taking this leap of faith. That's actually what makes it easier to handle though. I know... completely and totally KNOW deep down that this is right. Denver is exactly, undoubtedly where I am supposed to be at this time in my life. I have no ill thoughts about how long this has taken or the road I've traveled to get here. That was all necessary ~ part of me & my story. I really wouldn't change a thing. On that note though, I don't want to miss another thing. I refuse to let fear stop me from enjoying this beautiful life. I know everything is going to be good and it will completely outweigh the hard times.

This decision opens the door to new hope. Maybe I'll be able to teach again...in a classroom, exercise whenever I want without pain, have the family I've always dreamed about, and bring joy to my loved ones rather than worry.

I'm officially moving to Denver.