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.
Sunday, February 9, 2014
Friday, November 22, 2013
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!
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!
Monday, August 12, 2013
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.
Wednesday, July 17, 2013
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.
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.
Thursday, June 20, 2013
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.
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.
Thursday, May 23, 2013
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.
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.
Friday, April 26, 2013
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.
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.
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| Day One |
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| Day Two |
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| Afternoon of Day Two |
Wednesday, March 13, 2013
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!
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!
Monday, March 11, 2013
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.
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.
Monday, February 18, 2013
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...........
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...........
Monday, January 21, 2013
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.
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.
Tuesday, November 20, 2012
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..... ;)
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..... ;)
Thursday, November 15, 2012
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!
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!
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| Happy Fall! |
Friday, November 2, 2012
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.
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.
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| a recovery meal made just for me |
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| 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.
Thursday, October 25, 2012
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.
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.
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.
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| 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.
Tuesday, October 23, 2012
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...
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...
Thursday, October 11, 2012
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.......
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.......
Thursday, September 20, 2012
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.
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! |
Friday, September 7, 2012
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.
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... |
Wednesday, August 22, 2012
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 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.
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