a sluggish heart

I'm obedient. I'm a pretty good listener too. That's why I'm not worried (or offended) that Dr. Fenster called my heart sluggish today. I completely trust him. I'm alive today because God so strategically placed him in my life four years ago. That gives him the freedom I to call my heart names and then tell me not to worry about it. "Let me figure things out, then we'll deal with it." That's all he had to say. I'm on board and I'm really not going to worry.

Honestly though, I can be "not worried" but still not like the situation. That's okay, right? He and Dr. Olson have had some "concerns" about some of  my recent test results. Apparently my heart is being weird and they need to investigate. For now, that means wearing a holter monitor for a week and trusting them to take care of the rest. Heart monitors stink. Yeah, I know, there are so many things that are worse, more painful, and more invasive that I could have to go through. Of course I'm thankful it's just for a week and not a month. Seriously though, it stinks. I'm not looking forward to it. I don't like it. I don't want to wear it. I'm not going to like it. I'm obedient though. I also am not about to give up this fight. Soooo, I guess that means I'll be getting a lovely new accessory from National Jewish in a few days. I'll follow the directions and I'll continue doing what I do until I hear from Dr. Fenster.

I know it will all be okay.

Hoping for Hope

What a journey this has been! I know it's far from over, but I can handle that. I'm back in the saddle and just hoping for hope. Sometimes I just have to take a step back and simplify. 

Today I am going through a tailor-made, Dr. Olson style experiment. What a gift that she cares so much about me to constantly go above and beyond fighting for me. I adore her. I'm getting a tweaked version of the pharmacokinetics testing I've gone through in the past. This time, she's testing for hope. It's pretty clear that the prednisone has NOT been working in me for some unknown reason. Rather than testing to prove what we know, she's testing to see if liquid prednisolone WILL work. Lee and I are just as excited as she is! We're all hoping for hope today. The good that could come from this absolutely makes me smile. I truly can't wait for a "good" lab report. 

Our American Dream

The American Dream - yep, I wanted it. Ten years ago, I truly thought it wasn't in the cards for me. I was prepared to live with that. Last July everything changed. Lee proposed. We shared a dream. We shared hope and excitement. In October doctors gave us tangible hope in the form of a timeline. Six more months of treatment and we could focus on Baby Gibson. My body had a different plan in the spring though, and Dr. Wechsler asked us to hold off until May. In May, I was more unstable. The delay was understood and no new timeline was mentioned. It hurt. We held on to hope.

June has been a tough one. Meds haven't been doing their job. The fight has gotten harder. The calls from National Jewish have become more frequent and less positive. Dr. Olson admitted she is concerned about me carrying a baby. She asked me to get an appointment with Dr. Forschner (Rocky Mountain Women's Care). 

I did. In his office, that moment, on that day, his words were devastating. "It's time for you to look into other options like surrogacy." He had done research on my disease. Taking my medical history into consideration, he said he believed I could get pregnant. I would likely make it through the first and second trimesters. In the third trimester, he said it would be very likely that my body would not win the battle. He said Lee would likely be facing a decision to save me or the baby. 

Devastated.

I haven't been able to stop the thoughts from popping into my head. I kept realizing things I wouldn't get to experience. I won't let this crush me. I still have hope. I know from experience that these challenges in my life are ultimately for good. I know this can be all for good. Lee is such a gift to me. His strength, love, and optimism carries me through. We are such a team. We believe the American dream is ours to have. In fact, we believe we are living it now. We have each other, Jackson, a beautiful home, jobs we love, hope and the miracle of the future. 

Dr. Olson, my team, my loved ones and I are fighting even harder to find the secret to my wellness. We are following Dr. Forschner's advice and believing that Baby Gibson is still a possibility. We are thankful for our American Dream.

Full Body Reaction

I believe in celebrating victories and milestones because I've learned that I must be thankful for what I have while I have it. I must live in this moment and thank God for the miracle that it is. At the beginning of March I celebrated one year of NO hospital stays! It was hard for me to wrap my head around the magnificent milestone. It was real! I made it! We all made it! My life has changed so much in the last few years. I am thankful for each part of this journey.

I'm glad I celebrated that milestone because the good run came to an end this week. Nurse Rebecca called me at school on Tuesday. I could tell she didn't seem her usual chipper self. She said my lab results were in and Dr. Olson wanted me to go straight to the hospital. It wasn't a time to argue or bargain. She already knows me well. It was serious and I needed medical attention immediately. My eosinophils had spiked to a dangerous level and the prednisone I was on did not seem to be fighting them.

I had all the expected thoughts flooding into my head. The ultimate fact was that I was not well, my health was in danger, and I had to go to the hospital. I met with Kay. She lovingly and without hesitation took care of my class.

Lee met me at the hospital. The news wasn't what we hoped for, but we were prepared. They admitted me to a room and a sweet nurse took us upstairs. I was not prepared for what happened next. As she wheeled me into the room I had an instant full body reaction that I could not control. It was the exact same room that I spent that long and traumatic month in back in October of 2011. I have looked back on that month as a time that doctors and friends rallied around me in a way that is so incredible and humbling words will not do it justice. I think of it as a time when my road to wellness and my fight became more serious than ever. It is bizarre to me how even though I feel like I've let go of the pain and terrible memories of that month, my body clearly remembers it in vivid detail. Every muscle in my body tensed, I started having more trouble breathing, I was shaking and crying uncontrollably. Each part of the room I looked at made terrible and painful experiences flash in my head. I couldn't stop it.

My wonderful Lee, with tears in his eyes insisted the nurse move me to a different room. It was like he was reliving the pain with me. He held me through it and reminded me it was in the past. It made me realize that I've come a long way, but my experiences are still with me. It made me even more thankful of this life I'm blessed to live.

On the brighter side, I had another full body reaction during this hospital stay. I experienced overwhelming joy when I received uplifting and encouraging texts from my new colleagues and my new family. I will never be able to thank people enough for taking the time to send texts when I am in the middle of "medical stuff". It is incredible to feel what kind words and loving support does for the my fight.

Falling to Pieces

Little tiny, crumbly, messy pieces - that's what I feel I've turned into. I'm having such a hard time hanging on to positive me. I'm still here, I'm just in a bit of a rut. I'm sure I just need to get it out, then I'll be able to take a deep (well, maybe not deep...) breath and get back on track. So here goes, full force, honest, from the gut---release.

Work - it's so hard to explain what teaching means to me. It's so much more than a job or even a career - it's my purpose and my passion. When I had to go on medical leave and had to face the possibility of not being able to continue my days in the classroom covered in germs, ideas, and hugs, I was devastated. It made me even more determined and more passionate about my work. Now that I'm back at it, it is truly wonderful - a wonderful dream come true. The crushing factor is that I've started over in a new state, in a new school, with new everything. I had to give up my team, my reputation, my support system, my experience, and in some ways - my success to come to Colorado and fight for my health. It was the right decision. I would do it all over again. That doesn't make it any easier. The effort that it takes my body and my spirit to fight through each work day astonishes me. It completely frustrates me. It's only by the grace of God that I make it through. By noon (& sometimes way before) I feel like my body is crumbling in on me. The pain in my bones, lungs, and muscles brings me to tears when I can steal a free moment. The worry that consumes me (a non-worrier) is ridiculous. I fear having to be absent when I don't have sick days. I fear seeming incompetent. I fear seeming annoying and weak to colleagues and families who don't know my fight. I fear being a burden to people who hardly know me. Most of all, I fear not being able to give my students all they deserve. 

Friends - this is a biggie. I have never felt as sad as I have this year. It is almost like I've been grieving the loss of my friends. I feel so alone at times. I honestly don't know what I'd do without Lee. He truly is my best friend. He is my rock. I see him texting, talking to, and making plans with his friends and I long to have that again. I understand that it's tough to maintain a long distance friendship. I also understand that it's tough to open a comfortable friendship circle to new people. That doesn't make it any easier. It doesn't make me miss friends any less.

Money - this one is obvious...insurance out of pocket, prescriptions, lost pay from missing days at work. It's all part of it. I've dealt with it for years. I suppose it's normal though if just once in a while I wish I could spend all that money on something else. 

Failure - I'm a new wife and I'm lacking in so many ways. My heart hurts because I am constantly thinking of wonderful surprises or ways to show my love for Lee, but then I can't follow through because I get sick or don't have the strength. It pains me when we have to cancel or change plans because I am sick or don't have the strength. I feel like I am failing the one who is so dear to me. I also feel like I'm failing my doctors at National Jewish. I do everything, believe me, truly everything they ask or suggest and continue to get worse or have bad lab results. I try so hard to get better, to be well and I feel like I just keep failing. It's such an overwhelming and frustrating feeling.

Shew! Okay! I know in my head and even in my heart that I'm letting my frustrations overwhelm me. I'm letting exhaustion take over and losing sight of the real me. I've let myself be buried and almost lost sight of myself. It's okay. It is okay and it will be okay. I have a hope and a future. I DO know that this is and will be all for good. I know my life, the life I'm living right now is purposeful and incredible. I am a living, walking miracle and the love I feel daily is a priceless gift. I am thankful for everything about my now. I am me because of my journey and I am thankful.

I just need to remind myself that I'm human. I will fall to pieces from time to time. I will become overwhelmed and frustrated. I will lose sight of my optimism. I will fail. I will also get stronger and experience incredible miracles along the way.

PainPainPain

I want to start with the positive - I am so thankful that I took the leap of faith and moved to Denver when I did. I know that I'm much better, (& maybe even alive) because of treatment I've been getting here. There are so many ways that I can tell that I'm doing better. I absolutely believe with all my heart that my body is getting closer to "well" each day. 

I've noticed this school year that things really are different. I haven't had as many infections or viruses and the ones I have had have been more responsive to treatment. That's incredible. The other difference isn't so great. I've been experiencing more intense and consistent pain in my bones and joints and I've felt completely exhausted more often. I always try to box things up in my mind, you know, justify things that are going on so they don't seem like such a big deal. In this case, I've assumed these symptoms are connected to my Churg Strauss Syndrome and we just haven't found the right "potion" to attack it yet. That helps me hold on to the belief that this is temporary. For now though, it's hard to put into words how much my body hurts. It's bringing me to tears A LOT more often and getting MUCH harder to ignore. I guess I've experienced a level of constant pain for almost a year now. I learned to tolerate it though. It was a dull and constant ache that seemed to come from deep in my bones. It was mostly in my arms and hands. I just dealt with it. What else was I to do? 

This winter has been much worse. The dull pain is more intense in the bones of my arms and now sometimes even my legs. At times it changes from a constant pain to a nearly unbearable, radiating type pain. My joints are hurting more often now too. It's getting harder and harder to focus and push through the pain when it really flares. I keep praying that it will get better soon. I am praying that soon, this too will be a symptom of the past. 

A Slow Heal

To every athlete that plays through the effects of a concussion - I am in complete awe of you. My doctors have explained that my Churg Strauss causes my body to recover and heal more slowly than the average person. I have learned to handle that. The lack of control, inability to focus, and feeling that I actually lost intelligence through this recovery has been mind boggling.

On the evening of October 22nd, I was simply leaning over to get my laptop from the floor when Jackson thought I was playing a game. He rushed over in his zealous way and we bumped heads. Within the hour, my new husband was jumping into Coach first-aid mode. I was exhibiting nearly every sign of having a concussion. Oh, how one simple action can change the course of a night and even a month.

That's right - it's been a full month since that silly accident and I can finally say I'm starting to feel like myself again. Concussions are no joke. According to my neurologists, I'm not there yet. My brain is still healing and my body is still recovering. Concussions are absolutely no joke!

Opening up in my new home

It's simply part of my life. I try to find balance and comfort in knowing it's part of everyone's life. We all are faced with unexpected inconveniences from time to time. 

It's the first official day in my beautiful new school. My first day in this new home. The students are scheduled to come in one at a time to meet with me for DRA testing. Time to be "on" for that all important first impression. Unfortunately, my body had different plans. I woke early with that terrible familiar feeling. I couldn't get a breath. I did nebulizer treatments, inhalers, and took extra prednisone. I tried it all and was not responding like I should. I know the routine. I know my body. I knew this wouldn't just go away so I could work with 25 students one-on-one today. I was going to need to reach out for help, for a favor from people I barely knew. I was going to have to reveal my weaknesses before these new colleagues even had a chance to see my strengths. 

It was beyond hiding. I was struggling. It was time to open up in my new home. It was time to put my new school family to the test of me. I've been through it with so many people. It's amazing how I can see the future of a relationship in their eyes as soon as I start to open up and share tidbits of my story. Some people disengage immediately. They begin to view me as a health concern rather than a person. Others, those who I see as true champions in this world, are sincere, understanding, and most importantly - never lose sight of Me. My new family at Lone Tree seems to fit the latter. They seem to be willing to accept my body and they seem to believe in me. 

I had to leave early today and go to National Jewish for help. My duties were covered with love and I felt accepted. It was a good feeling. I am so thankful for this new home.

Escaping My Purple Haze

Methotrexate

This is the one and only medicine that I fear and hate more than prednisone. I've heard great stories about success rates with methotrexate since my journey in the autoimmune world began. When Dr. Wechsler suggested it back in the spring, I was more than happy to give it a try. The imuran did not seem to be doing it's job, so it seemed reasonable to try something that I'd heard such great things about. 

OMG!

The first trial run was quite a bust. I was so sick! I was vomiting, feverish, exhausted, developed nasty sores in my mouth and all out miserable. Dr. Olson quickly stopped the medication and within about a week the side effects had subsided. Since then, my condition has not improved and we weren't any closer to better options. Dr. Wechsler and Dr. Olson (along with my consent) decided it would be worth it to try methotrexate again. 

OMG!

I honestly was totally optimistic. I was just sure that my body would take to the medication more easily this time and the side effects would be less severe. 

It was sooooooooooooooooooooo much worse. I absolutely LOST MY MIND. No kidding. I went into a deep purple haze that turned me into a completely different person. It was surreal, almost like an out of body experience. I could actually see myself reacting to situations and feeling things that I knew were not real or sensible. I couldn't control it at all. I was crying constantly - not a lot - not several times a day ----- I mean constantly. I was offended by facial expressions, comments, and even signs. I felt like I was being attacked from every direction. Inside, I knew something was seriously wrong, but I didn't know how to prove it to anyone. I felt complete insane and completely alone. 

Carly, my VCD therapist at National Jewish was the first to truly listen to me. I broke down in front of her and pleaded for help. I bawled and squawled that something was seriously wrong with me. She thankfully had met with me enough times to recognize my need. She got me to Dr. Olson's nurses and we started to solve the mystery. My purple haze was a terrible side effect from the methotrexate. We stopped the treatment immediately and after several more days I finally felt the haze lifting. They vowed as a team that we would never try methotrexate again. I'm so thankful that it has saved so many lives, but I felt like it was destroying mine. 

I must say, this experience made me so much more sympathetic toward people who are naturally more emotional and reactive. What an exhausting roller coaster it must feel like they are riding from day to day. I am so very thankful that the purple haze is gone. I can guarantee that I will never try methotrexate again. That medication is not for me.

POTS

Today I had an appointment at Anschutz Inpatient Pavilion with Dr. Wendy Tzou. As I was walking across the parking lot, I glanced up at the building and froze. I realized this is the first time I've walked into this building since the morning of my open heart surgery. I felt a rush of emotions and memories as I stared up at the tall building and the name imprinted across the top. I felt uncomfortably alone in that moment. I wished so much for someone to be walking in with me. I felt terribly alone and even a little scared as I sat in the waiting room. I know I wasn't there for heart surgery this time, but it was still an intense experience. Sometimes it feels like my coping skills just crumble and my body needs me to acknowledge what it's going through. This stuff is a big deal. It is scary and that's okay. It's okay to try to be strong, but I need to realize it's also okay to be let my body feel what it's going through. 


The appointment was a success all in all. Dr. Tzou confirmed Dr. Fenster's diagnosis of POTS. She said there is no need for the tilt testing or any other testing because the diagnosis is solid. She confirmed that it is a condition that I will simply have to learn to deal with. Dizziness and feelings of motion sickness will be part of my life. Changing positions cautiously has already made a difference for me. I will also continue to be on midodrine which will help to increase my blood pressure. I'll take this as a medical victory because it seems to have a straightforward plan of action. Thank you Dr. Tzou and Dr. Fenster for helping me.

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.