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.