November 30th already! This month has flown by. For my last thankful post for the year, I want to go back to two people who I only mentioned briefly in my very first thankful post. I thought about it and I felt like these very special people kind of got the short end of the stick since I included them in a lump with the first nine things/people I said I was thankful for.
As I mentioned yesterday, I have learned from Lisa and from my own experiences that caretaking for someone who is sick is often an extremely thankless job. Most people are usually concerned for the person who is sick. The sick person often gets the cards, support, the phone calls, the emails, and the outpouring of kindness... But the caretakers often go overlooked even though they are struggling with the worry, stress, and pure exhaustion that directly accompanies caring for a loved one who is sick.
I am so thankful for the people who have been my caretakers since I have been sick. I am not sure how I would have survived thus far without them.
Brad, first of all has amazed me with his strength through this time. He has never wavered in assuring me that everything will turn out okay in the end. He has endured many mascara soaked shirts. He has picked up the pieces when everything has seemed to fall apart. He has picked up the slack of not only working full time, but doing so much of the "extras" such as housework, grocery shopping, cooking, picking up prescriptions, driving me all over the Midwest to doctors....
He has rubbed my feet or my back each night to help me fall asleep. He puts my compression stockings on each morning (which I am convinced would become a viral YouTube video if we ever posted it). That's love people.
When I feel the guilt of, "but you didn't sign up for a wife with an illness" he always tells me I'm silly and assures me he loves me for me, with or without an illness. Brad has seen the good, the bad, and the ugly, that only a caretaker often experiences with someone who is sick. I told Brad the other day, that this past year could have made us stronger, or could have made us fall apart at the seams. I am so thankful that I can say that our marriage is now stronger because of what we have been experiencing together. Brad, I know you do not often get told this, but I am so, so thankful for you and everything you do for US. You are the love of my life, and my rock. I love you and I am so thankful for you.
My Mom, has also been one of my caretakers during this time (who am I kidding...all of my life). My Mom has understood that while I am sick, it is still important to allow me to do normal things, and to get out into the world. I look forward to our Sunday afternoons, because this is the time my Mom picks me up and we go to church, to lunch, and shopping. She pushes me in my wheelchair like she is an expert.
My Mom is such a sounding board and a voice of reason for me. She truly gives the best advice. When I get to my hysterical point, my Mom is best at calming me down and helping me gain perspective. She always reminds me of how strong I am and that I will get over this hurdle I am facing. My Mom also has done so many thankless tasks for me as well including driving me all over to doctors, taking my blood pressure, taking me to the ER, constantly lifting me up when I get down...
I know my Mom is tired. She is tired after having two of her daughters sick in the last three years. She is tired with worry. But she never lets you know. My Mother is the strongest woman I know. I truly believe she is a saint. I am thankful that I can call my Mom one of my best friends. She is my biggest fan. I love you Mama. Thank you for everything.
And to end this post and to close out November, I am thankful for the opportunities and twists and turns that lie ahead. I am thankful for the ability to see how my story continues to unfold. Pure and simple, I am thankful for my life.
Tuesday, November 30, 2010
Monday, November 29, 2010
11/29/10 Thankful
Today I am thankful for the people who inspire me. I am thankful for the living examples in my life that have either overcome, or are living with chronic illnesses in the most positive ways that they can...
I have family members and friends with MS who are running marathons, working full time jobs, raising kids...
I have family members and friends who have beaten cancer, or are currently in the process of beating cancer.
I have a family member living life to the fullest with PAN Vasculitis.
I have family members and friends who live with pain from chronic illnesses day to day, but still CHOOSE to live life to the fullest.
These are people who I consider to be heroes.
When I was being tested for Myasthenia Gravis, my friend Theresa put me into contact with a woman she sings in the choir with atSt. Thomas
Lisa Gigliotti was diagnosed with Rheumatoid Arthritis AND Myasthenia Gravis in her twenties. When she was wheelchair bound, both her Mother and her Grandmother who were her caretakers (think feeding, bathing, dressing) were killed in a car crash on Christmas. The pain she had to deal with was insurmountable but through it all she has remained hands down one of the (if not THE) most positive individuals I have ever met. Lisa has gone from living in a nursing home in a wheelchair, to becoming a successful attorney and now, law judge (who can now walk thanks to, I believe, 9 orthopaedic surgeries so far).
I have had the fortunate opportunity to talk to Lisa on the phone a couple of times. I will never forget the time she told me, "Katie, I am so proud of you. Has anyone told you that? You are being such an amazing advocate for yourself, and you are so positive and have such strength." Her kind words brought on such a flood of emotions as she told ME, what I thought about her. Lisa has always ended our phone conversations with "CORAGGIO Katie" (courage in Italian).
Lisa later sent me the two books she has released so far with personalized messages written inside. I have read her first book three times. Whenever I have my roughest days, I read parts of Lisa's book and it immediately puts things into perspective. I am not sure if it is usual for people to come across books in their lifetime that change their lives forever. But for me her book has done just that.
Through Lisa's writings and advice, she has taught me so much...too much to include everything in this one post. But here are a few:
That being the victim is a waste of time, and a means to kill any hope that is out there. That there is ALWAYS hope and options, no matter what a doctor says. That Italian Testadura (Hardheadedness) will get you very far in life if you use it for the right reasons. When things seem to be slipping more and more out of control, there is always SOMETHING you can find that you can control. That it is so important to embrace your loved ones, and tell them how much they mean to you and how much you love them each day. That self-love is key. That caretakers have a thankless job and I must acknowledge this and give thanks where thanks is due. That no matter how scared you are, it is important to always take action and be the best advocate you can be because no one else will do it for you. That having a gratitude attitude each and every day is important for mental health. That CORAGGIO is the backbone of getting through anything.
Lisa will NEVER know the impact she has had on my life during the last few months. Her influence has been life changing for me. I look at her like she is a celebrity. Or someone that was sent to me at just the right time in my life. Or a heavenly angel. I cannot wait until the day I finally get to hug her in person and tell her how much she means to me.
Lisa has a website that I look at often. You can find it here.
I have read her books, Coraggio! Lessons for Living from an Italian Grandmother Despite Illness, Pain, and Loss, and I am currently reading, Coraggio! Lessons for living from an Italian Grandmother. The Courage to Believe in Miracles. I am eagerly awaiting the next two books she will be releasing in the next year.
I also want to include the links of Lisa telling HER story. I have probably watched them a few dozen times already; especially when I needed a glimmer of hope, or a reminder that there are always things I can take charge of. This is part One, and this is part Two of Lisa telling her story.
And this is the link to an interview she gave to aDetroit
Lisa Gigliotti is a hero. And I am thankful for her, and all of the other heroes in my life.
I have family members and friends with MS who are running marathons, working full time jobs, raising kids...
I have family members and friends who have beaten cancer, or are currently in the process of beating cancer.
I have a family member living life to the fullest with PAN Vasculitis.
I have family members and friends who live with pain from chronic illnesses day to day, but still CHOOSE to live life to the fullest.
These are people who I consider to be heroes.
When I was being tested for Myasthenia Gravis, my friend Theresa put me into contact with a woman she sings in the choir with at
Lisa Gigliotti was diagnosed with Rheumatoid Arthritis AND Myasthenia Gravis in her twenties. When she was wheelchair bound, both her Mother and her Grandmother who were her caretakers (think feeding, bathing, dressing) were killed in a car crash on Christmas. The pain she had to deal with was insurmountable but through it all she has remained hands down one of the (if not THE) most positive individuals I have ever met. Lisa has gone from living in a nursing home in a wheelchair, to becoming a successful attorney and now, law judge (who can now walk thanks to, I believe, 9 orthopaedic surgeries so far).
I have had the fortunate opportunity to talk to Lisa on the phone a couple of times. I will never forget the time she told me, "Katie, I am so proud of you. Has anyone told you that? You are being such an amazing advocate for yourself, and you are so positive and have such strength." Her kind words brought on such a flood of emotions as she told ME, what I thought about her. Lisa has always ended our phone conversations with "CORAGGIO Katie" (courage in Italian).
Lisa later sent me the two books she has released so far with personalized messages written inside. I have read her first book three times. Whenever I have my roughest days, I read parts of Lisa's book and it immediately puts things into perspective. I am not sure if it is usual for people to come across books in their lifetime that change their lives forever. But for me her book has done just that.
Through Lisa's writings and advice, she has taught me so much...too much to include everything in this one post. But here are a few:
That being the victim is a waste of time, and a means to kill any hope that is out there. That there is ALWAYS hope and options, no matter what a doctor says. That Italian Testadura (Hardheadedness) will get you very far in life if you use it for the right reasons. When things seem to be slipping more and more out of control, there is always SOMETHING you can find that you can control. That it is so important to embrace your loved ones, and tell them how much they mean to you and how much you love them each day. That self-love is key. That caretakers have a thankless job and I must acknowledge this and give thanks where thanks is due. That no matter how scared you are, it is important to always take action and be the best advocate you can be because no one else will do it for you. That having a gratitude attitude each and every day is important for mental health. That CORAGGIO is the backbone of getting through anything.
Lisa will NEVER know the impact she has had on my life during the last few months. Her influence has been life changing for me. I look at her like she is a celebrity. Or someone that was sent to me at just the right time in my life. Or a heavenly angel. I cannot wait until the day I finally get to hug her in person and tell her how much she means to me.
Lisa has a website that I look at often. You can find it here.
I have read her books, Coraggio! Lessons for Living from an Italian Grandmother Despite Illness, Pain, and Loss, and I am currently reading, Coraggio! Lessons for living from an Italian Grandmother. The Courage to Believe in Miracles. I am eagerly awaiting the next two books she will be releasing in the next year.
I also want to include the links of Lisa telling HER story. I have probably watched them a few dozen times already; especially when I needed a glimmer of hope, or a reminder that there are always things I can take charge of. This is part One, and this is part Two of Lisa telling her story.
And this is the link to an interview she gave to a
Lisa Gigliotti is a hero. And I am thankful for her, and all of the other heroes in my life.
Awesomeness
So, I think this merits it's own special blog post. After I got home from Fort Wayne today from getting a T9 nerve block, I had a message on my phone to call the famous Dr. Tinkle's office.
To back up, when I thought I was going to be diagnosed with Ehlers Danlos, I got back to hard core researching, and realized that Dr. Brad Tinkle is pretty much a God to EDS patients. He has written two books about it to help people understand the complexity of the disorder. He wrote these two books as handbooks for family, the person diagnosed, or for other doctors. I, of course, immediately ordered both books and have read them a couple of times already. They are so easy to read, and they help me understand how Ehlers Danlos can/is effecting many different parts of my body. The books also give many helpful ways to manage the disorder depending on the symptoms and the body systems effected. Dr. Tinkle is a geneticist and is the co-director of the Ehlers Danlos clinic at Cincinnati's Children Hospital. He speaks all over the world about EDS.
So then I went into stalker mode and I emailed Dr. Tinkle to ask a few questions-mainly if he sees adults since he works at the Children's Hospital. I didn't think I would ever hear back, but I thought it was worth a try. Well, he emailed me back the next day (a Saturday) and told me that he does see adults and I should come see him. He said I should make an appointment now, since it takes a long time to get in. He explained that he helps with a treatment plan once an EDS or another connective tissue diagnosis has been made.
Well, he was right about taking a while to get in. I called a month ago, and up until today my appointment was for February 28th. I have been calling each day to see if there have been any cancellations, with no luck. I actually counted the weeks in the car on the way to Fort Wayne today and told my Dad I still had 13 weeks.
With my confirmed Ehlers Danlos diagnosis made in Fort Wayne, Larry (Dr. Nassar) went into miracle worker mode and called and spoke to Dr. Tinkle himself last Monday. Dr. Tinkle explained some of the disorder to him, and said to call the woman in charge of the connective tissue clinic and they would see what they could do. I called last Wednesday and did not hear anything which did not surprise me since it was a holiday weekend.
Sooo, that brings me to today. I called Dr. Tinkle's office back after I listened to the message and the person I talked to asked if I could come on December 9th! Next week! 10 days instead of 13 weeks! I said I would MAKE it work.
So it is set. Brad and I will be going to Cincinnati next Wednesday night. We will be spending the night at my Aunt Mada and Uncle Brock's house. Thursday morning at 10:30 I meet with an Ehlers Danlos physical therapist who works with Dr. Tinkle. Then I am seeing Dr. Tinkle at 3:30. I am his last patient of the day. They said to plan on being there for a while since the first visits are usually long ones. So we will probably stay at my Aunt and Uncle's house again and come home Friday. I wish I could bring a video camera and at least tape the physical therapy part so I can bring it to my therapist here. I will have to check on that...
When I got off of the phone I felt like I had won the lottery. Is that sad? :)
If you want to read more about the famous Dr. Tinkle, here is a link to his bio:
http://www.cincinnatichildrens.org/svc/alpha/c/dysplasias/fs/fac/brad-tinkle.htm
You can also find his books here and here.
Hopefully I will come away with at least a start of a plan of action to show Ehlers Danlos whose boss!
I feel pretty lucky tonight to have so many people in my corner.
To back up, when I thought I was going to be diagnosed with Ehlers Danlos, I got back to hard core researching, and realized that Dr. Brad Tinkle is pretty much a God to EDS patients. He has written two books about it to help people understand the complexity of the disorder. He wrote these two books as handbooks for family, the person diagnosed, or for other doctors. I, of course, immediately ordered both books and have read them a couple of times already. They are so easy to read, and they help me understand how Ehlers Danlos can/is effecting many different parts of my body. The books also give many helpful ways to manage the disorder depending on the symptoms and the body systems effected. Dr. Tinkle is a geneticist and is the co-director of the Ehlers Danlos clinic at Cincinnati's Children Hospital. He speaks all over the world about EDS.
So then I went into stalker mode and I emailed Dr. Tinkle to ask a few questions-mainly if he sees adults since he works at the Children's Hospital. I didn't think I would ever hear back, but I thought it was worth a try. Well, he emailed me back the next day (a Saturday) and told me that he does see adults and I should come see him. He said I should make an appointment now, since it takes a long time to get in. He explained that he helps with a treatment plan once an EDS or another connective tissue diagnosis has been made.
Well, he was right about taking a while to get in. I called a month ago, and up until today my appointment was for February 28th. I have been calling each day to see if there have been any cancellations, with no luck. I actually counted the weeks in the car on the way to Fort Wayne today and told my Dad I still had 13 weeks.
With my confirmed Ehlers Danlos diagnosis made in Fort Wayne, Larry (Dr. Nassar) went into miracle worker mode and called and spoke to Dr. Tinkle himself last Monday. Dr. Tinkle explained some of the disorder to him, and said to call the woman in charge of the connective tissue clinic and they would see what they could do. I called last Wednesday and did not hear anything which did not surprise me since it was a holiday weekend.
Sooo, that brings me to today. I called Dr. Tinkle's office back after I listened to the message and the person I talked to asked if I could come on December 9th! Next week! 10 days instead of 13 weeks! I said I would MAKE it work.
So it is set. Brad and I will be going to Cincinnati next Wednesday night. We will be spending the night at my Aunt Mada and Uncle Brock's house. Thursday morning at 10:30 I meet with an Ehlers Danlos physical therapist who works with Dr. Tinkle. Then I am seeing Dr. Tinkle at 3:30. I am his last patient of the day. They said to plan on being there for a while since the first visits are usually long ones. So we will probably stay at my Aunt and Uncle's house again and come home Friday. I wish I could bring a video camera and at least tape the physical therapy part so I can bring it to my therapist here. I will have to check on that...
When I got off of the phone I felt like I had won the lottery. Is that sad? :)
If you want to read more about the famous Dr. Tinkle, here is a link to his bio:
http://www.cincinnatichildrens.org/svc/alpha/c/dysplasias/fs/fac/brad-tinkle.htm
You can also find his books here and here.
Hopefully I will come away with at least a start of a plan of action to show Ehlers Danlos whose boss!
I feel pretty lucky tonight to have so many people in my corner.
Sunday, November 28, 2010
11/28/10 Thankful
Today I am thankful for friendships...all of the friendships I have had in my 29 years. I am thankful for friends who are near and far. I am thankful for friends who know what kind of day I am having when I say a simple "hello" when I pick up the phone.
I am thankful for my gymnastics friends. For my elementary and middle school friends. For my Sexton friends. For my Spartan friends. For my Wexford friends. For my neighbor friends. For family friends. For friends of friends. For the friends who once were Brad's friends but who now are OUR friends.
I am thankful for that person at the grocery store who offers a friendly gesture, helping hand, or simple smile.
I am so thankful for those few friends who have known me since I was a child, and who still know me better than most.
I am thankful for the friendships I have that no matter how much time passes, we can still pick up right where we left off.
I am thankful for the friends I have not met yet who will continue to shape who I am.
I am thankful for my gymnastics friends. For my elementary and middle school friends. For my Sexton friends. For my Spartan friends. For my Wexford friends. For my neighbor friends. For family friends. For friends of friends. For the friends who once were Brad's friends but who now are OUR friends.
I am thankful for that person at the grocery store who offers a friendly gesture, helping hand, or simple smile.
I am so thankful for those few friends who have known me since I was a child, and who still know me better than most.
I am thankful for the friendships I have that no matter how much time passes, we can still pick up right where we left off.
I am thankful for the friends I have not met yet who will continue to shape who I am.
Saturday, November 27, 2010
11/27/10 Thankful
Today I am thankful for music. I have always loved all kinds of music. I have already mentioned how music has played such a role in keeping me sane during this time. I am thankful how music can change my mood in an instant. I am thankful how music can inspire me. I am thankful how music can evoke so many emotions. I am thankful for the songs that seem to be written just for me. If you walked into my house during the day, you would almost always hear music playing.
I love this quote from Ray Charles:
“I was born with music inside me. Music was one of my parts. Like my ribs, my kidneys, my liver, my heart. Like my blood. It was a force already within me when I arrived on the scene. It was a necessity for me-like food or water.”
I, too, feel like now more than ever that music is a necessity for me. I consider music to be an integral piece of my treatment plan.
Here are some of the top songs that have meant a lot to me in the past year for a variety of reasons. (It's a pretty random list, I know):
I love this quote from Ray Charles:
“I was born with music inside me. Music was one of my parts. Like my ribs, my kidneys, my liver, my heart. Like my blood. It was a force already within me when I arrived on the scene. It was a necessity for me-like food or water.”
I, too, feel like now more than ever that music is a necessity for me. I consider music to be an integral piece of my treatment plan.
Here are some of the top songs that have meant a lot to me in the past year for a variety of reasons. (It's a pretty random list, I know):
- The Sunshine Song (Jason Mraz)
- Let It Be (The Beatles)
- Lots of Counting Crows including A Long December
- Ordinary Day and Lucky Me (Great Big Sea)
- Fix You (Coldplay)
- I Will Show You Love (Kendall Payne)
- Fight Outta You (Ben Harper)
- Her Diamonds (Rob Thomas)
- Not Afraid (Eminem)
- Fighter (Christina Aguilera)
- Gravity (John Mayer)
- Just Breathe (Pearl Jam)
- Pig, One Sweet World, Grey Street (Dave Mathews Band)
- Man In the Mirror (Michael Jackson)
- Avalanche (Chris Trapper)
- Jesus Take the Wheel (Carrie Underwood)
- Lots of Ray Lamontagne
- Lots of Jimmy Buffett
Friday, November 26, 2010
11/26/10 Thankful
Today I am thankful for my extended family. I am thankful for the safety net and love that my extended family provides. I am thankful to know that I could call up any one of my cousins, uncles, or aunts, and they would have my back in a heartbeat. I am thankful for the times all of my extended family is one place. It doesn't happen often, but when it does watch out. It is crazy, it is loud, it is unpredictable, but it is us. And I wouldn't have it any other way.
Five For Friday 11/26/10
1. I started my Beta Blocker, Propranolol and started wearing compression stockings. I was terrified of swallowing my first pill because I've had a history of being allergic to medications, but thankfully nothing crazy happened. My compression stockings are definitely going to take some time to get used to, and I would appreciate any tips on how to get them on in less than 20 minutes.
2. Brad put up our Christmas tree and I listened to Christmas music all week. My newest Christmas albums are the Chris Trapper Christmas album (Thanks Mada) and the Glee Christmas album. I love this time of year.
3. Thanksgiving was one of the best days I've had in a long time. It was a day filled with so much love, laughter, and family.
AND, Uncle Steve did NOT burn the rolls. They were the best rolls I've ever had! Love you Uncle Steve!
4. I spent some quality time with the beautiful Cecilia Jane. She makes me so very happy. (Please take note of the Michigan State Bib her parents (who are U of M graduates) decked her out in).
5. Monica came to visit! Monica and I have been friends since we were about 6 years old, and we grew up together in the gym. She is one of those rare friends you have in your life that no matter how much time passes, you are always able to pick up right where you left off. Love you Mo Mo!
2. Brad put up our Christmas tree and I listened to Christmas music all week. My newest Christmas albums are the Chris Trapper Christmas album (Thanks Mada) and the Glee Christmas album. I love this time of year.
3. Thanksgiving was one of the best days I've had in a long time. It was a day filled with so much love, laughter, and family.
AND, Uncle Steve did NOT burn the rolls. They were the best rolls I've ever had! Love you Uncle Steve!
4. I spent some quality time with the beautiful Cecilia Jane. She makes me so very happy. (Please take note of the Michigan State Bib her parents (who are U of M graduates) decked her out in).
5. Monica came to visit! Monica and I have been friends since we were about 6 years old, and we grew up together in the gym. She is one of those rare friends you have in your life that no matter how much time passes, you are always able to pick up right where you left off. Love you Mo Mo!
Thursday, November 25, 2010
11/25/10 Thankful: Happy Thanksgiving!
Today on Thanksgiving, I have so much to be thankful for. I am thankful for traditions and for family. I am thankful that I get to celebrate Thanksgiving with both sides of my family; the Dama's and the Jaskolski's. I am thankful for all of my extended family; aunts, uncles, cousins...
I am thankful for the delicious food that fills my tummy. Bounzadotes (sp?), Stuffing, Gnocchi and Italian Sausage, Turkey, Stuffed Mushrooms, Lemon Bars, Broccoli Rice casserole, Kids Wine, and so much more.
I am thankful for the annual burnt rolls.
I am thankful for gathering around after dinner and having an elaborate sing-a-long to Dominick the Donkey. I am thankful that when everyone is off key, it doesn't matter because we are all together, singing, laughing, and having a blast.
I am thankful for when both my Dad and my Father-In-Law say Grace before we eat to give thanks and reflect on the past year.
I am thankful for the precious time with loved ones. I am thankful for the reflection and hope that each Thanksgiving brings.
Happy Turkey Day to all! Thank you for being a part of my life.
I am thankful for the delicious food that fills my tummy. Bounzadotes (sp?), Stuffing, Gnocchi and Italian Sausage, Turkey, Stuffed Mushrooms, Lemon Bars, Broccoli Rice casserole, Kids Wine, and so much more.
I am thankful for the annual burnt rolls.
I am thankful for gathering around after dinner and having an elaborate sing-a-long to Dominick the Donkey. I am thankful that when everyone is off key, it doesn't matter because we are all together, singing, laughing, and having a blast.
I am thankful for when both my Dad and my Father-In-Law say Grace before we eat to give thanks and reflect on the past year.
I am thankful for the precious time with loved ones. I am thankful for the reflection and hope that each Thanksgiving brings.
Happy Turkey Day to all! Thank you for being a part of my life.
Wednesday, November 24, 2010
11/24/10 Thankful
Tonight I am thankful for laughter. There have been a few core things that have helped me get through the tough times in my life thus far, and laughter has ALWAYS been one of them. I am thankful that I believe and recognize that laughter is truly a means of healing for the mind and the body. When life seems overwhelming, it is laughter that often helps me forget my cares or helps me forget the pain or the sickness I may be experiencing, even if it is for a brief moment. I am thankful I have the ability to laugh at myself, because honestly at times, it is either laugh or cry, and I would much rather laugh.
I am thankful that my family uses laughter to help heal wounds, and as a means of turning a heavy issue into something much lighter. When I was diagnosed with Ehlers Danlos, my brother called me Gumby, and asked me where my friend Pokey was. When my nerve was taken from my arm, my sister referred to my hand as "Flops." When I said I had EDS to someone, I found it hilarious that they asked me if that was Erectile Dysfunction. When I told the lady at Sparrow who was measuring me for my compression stockings that my diagnosis was POTS, she said, "That has to do with weed?"
I am thankful for the moments of humor that come out of seemingly non-laughable matters.
I am thankful for the medicine that is the pure, side-splitting, pee your pants kind of laughter that is so good for the soul.
I am thankful that my family uses laughter to help heal wounds, and as a means of turning a heavy issue into something much lighter. When I was diagnosed with Ehlers Danlos, my brother called me Gumby, and asked me where my friend Pokey was. When my nerve was taken from my arm, my sister referred to my hand as "Flops." When I said I had EDS to someone, I found it hilarious that they asked me if that was Erectile Dysfunction. When I told the lady at Sparrow who was measuring me for my compression stockings that my diagnosis was POTS, she said, "That has to do with weed?"
I am thankful for the moments of humor that come out of seemingly non-laughable matters.
I am thankful for the medicine that is the pure, side-splitting, pee your pants kind of laughter that is so good for the soul.
Tuesday, November 23, 2010
11/23/10 Thankful
Today I am thankful for my Wexford Montessori Family. I can honestly say that I work at the BEST school, and I cannot wait to return once I have a handle on the POTS and the EDS.
First and foremost, I am thankful for ALL of the kids that make up Wexford. The kids are why I love what I do, and are my inspiration each day to keep pushing forward to get better so I can be back with them. Oh, how I miss and love those kids.
I am thankful for all of the families who have constantly showed support and have offered so many times to help in any way they can. I am thankful for all of the messages, kind thoughts, cards, and donations that I have received from the amazing families that make up Wexford.
I am thankful for the whole Wexford staff; for the constant stream of cards, prayers, messages, donations, and love. I am thankful for all of the Wexford staff who have let me know on so many occasions that they are pulling for me. I am thankful for the staff who have gone above and beyond to help make sure that my classroom is running smoothly, and that Mrs. Blake has everything she needs.
I am thankful for the Children's House gals (Karen, Angie, Kim, Meghan, Theresa, Margaret, and Zondra) for their LOVE and for helping with the medical leave transition so much this school year.
I am thankful for Mrs. Blake and Ms. Margaret for taking over in my absence and for doing such an amazing job at that.
I am thankful for my principal for showing me so much understanding, love, and patience since I have been on medical leave. I am thankful for the time she blessed my body with Holy Oil, prayed with me, and made sure that I knew that health and family always comes first.
I am thankful for Ms. Theresa for being an "angel" during this time. For calling me each and every day, for cheering me on, for keeping the staff and parents informed, for pushing me in my wheelchair when I need to go places, for keeping me in the loop, for helping me research the best doctors for my care, for putting me in contact with amazing, inspiring people including doctors and nurses, for offering to take me to any appointment, and for ALWAYS being there to listen, offer advice, or just make me laugh.
I am thankful for Dr. Karen May, who is not only the BEST chiropractor, but who is also a parent of a child in my room. Dr. May has spent hours on the phone with me to help me understand all of the medical stuff that has been happening, as well as how to make my body the healthiest it can be through nutrition, supplements, and overall wellness. She has brought us delicious, anti-inflammatory dinners on more than one occasion. She has called so many times for updates, and has not let me forget my faith. When I had to go to the ER because of neck pain and extreme headaches, Dr. May talked me through what I needed to do to relieve a lot of the pain.
I am thankful for all of the families and staff who were a part of the Spaghetti Dinner that was held on my birthday. I am thankful for Kelly VanHorn, another one of my parents for putting everything together in order to create such an amazing act of kindness that I will never forget.
I am so very blessed and thankful for my Wexford Family.
First and foremost, I am thankful for ALL of the kids that make up Wexford. The kids are why I love what I do, and are my inspiration each day to keep pushing forward to get better so I can be back with them. Oh, how I miss and love those kids.
I am thankful for all of the families who have constantly showed support and have offered so many times to help in any way they can. I am thankful for all of the messages, kind thoughts, cards, and donations that I have received from the amazing families that make up Wexford.
I am thankful for the whole Wexford staff; for the constant stream of cards, prayers, messages, donations, and love. I am thankful for all of the Wexford staff who have let me know on so many occasions that they are pulling for me. I am thankful for the staff who have gone above and beyond to help make sure that my classroom is running smoothly, and that Mrs. Blake has everything she needs.
I am thankful for the Children's House gals (Karen, Angie, Kim, Meghan, Theresa, Margaret, and Zondra) for their LOVE and for helping with the medical leave transition so much this school year.
I am thankful for Mrs. Blake and Ms. Margaret for taking over in my absence and for doing such an amazing job at that.
I am thankful for my principal for showing me so much understanding, love, and patience since I have been on medical leave. I am thankful for the time she blessed my body with Holy Oil, prayed with me, and made sure that I knew that health and family always comes first.
I am thankful for Ms. Theresa for being an "angel" during this time. For calling me each and every day, for cheering me on, for keeping the staff and parents informed, for pushing me in my wheelchair when I need to go places, for keeping me in the loop, for helping me research the best doctors for my care, for putting me in contact with amazing, inspiring people including doctors and nurses, for offering to take me to any appointment, and for ALWAYS being there to listen, offer advice, or just make me laugh.
I am thankful for Dr. Karen May, who is not only the BEST chiropractor, but who is also a parent of a child in my room. Dr. May has spent hours on the phone with me to help me understand all of the medical stuff that has been happening, as well as how to make my body the healthiest it can be through nutrition, supplements, and overall wellness. She has brought us delicious, anti-inflammatory dinners on more than one occasion. She has called so many times for updates, and has not let me forget my faith. When I had to go to the ER because of neck pain and extreme headaches, Dr. May talked me through what I needed to do to relieve a lot of the pain.
I am thankful for all of the families and staff who were a part of the Spaghetti Dinner that was held on my birthday. I am thankful for Kelly VanHorn, another one of my parents for putting everything together in order to create such an amazing act of kindness that I will never forget.
I am so very blessed and thankful for my Wexford Family.
It's a Start
When I was on the diagnosis path and was beginning to think I had EDS and POTS, I would look on the Internet for hours at a time to try and find what people were doing to manage both disorders. So I have decided to document the process that I am going through to figure out what works for my own records and for anyone else out there who may also be looking for more information on the management of either disorder.
I have come up with a beginning schedule of ways to try and help manage my POTS and EDS until I can get more treatments going such as physical therapy, prolotherapy, chiro/massage, water therapy...Of course this schedule does not take into account day-to-day happenings such as appointments, errands, housework, etc...
MORNING:
Obviously this is just a beginning plan and it will most likely need to be tweaked as I continue on this journey to get better. To end this pretty boring post, I wanted to add the song that goes through my head every time I am looking for salty foods to eat (click on the link below). I think you are probably starting to get the idea that I am a true Parrothead at heart!.
Salt! Salt! Salt!
I have come up with a beginning schedule of ways to try and help manage my POTS and EDS until I can get more treatments going such as physical therapy, prolotherapy, chiro/massage, water therapy...Of course this schedule does not take into account day-to-day happenings such as appointments, errands, housework, etc...
MORNING:
- For breakfast I drink "Dr. Joe's Magic Potion." The recipe for this drink was given to me by my physiatrist/spine doctor. It's main purpose is to bring down inflammation in the body. I really feel like I have felt some relief as far as pain goes since I have been drinking this concoction. It consists of: 1 large leaf of Kale, 5 big chunks of raw pineapple, half of a banana, 1 tablespoon of lemon juice, one tablespoon of fish oil, 1 tablespoon of ginger root (or as much as you can handle), 1 cup of water, and I add 1 cup of Odwalla juice (but you can also add the following juice brands: Bolthouse or Naked). Then I blend it all up for a smoothy. It tastes MUCH better than it looks. I drink half and then with the other half, I add my first dose of sea salt and drink it fast!
- I take my Beta Blocker (Propranolol), 600 mg of Co Q 10, and 2 multi vitamins with the smoothy.
- SALT, WATER and COMPRESSION STOCKINGS.
- I do my exercises with my heart rate monitor on. I blare music~Most recently Michael Jackson (Don't judge me~ Man In The Mirror, PYT, and Dirty Diana get me going every time :) I pretend each time that I exercise that I am preparing for the Olympics.
- These exercises include:
- Toe rises (10 at a time) (to train blood vessels by helping pump venous blood back to my heart)
- Clams and Pelvic Bridges for stabilization
- Foam roller balancing exercises for core stabilization
- Squats (to train blood vessels by bringing my heart closer to the floor and therefore, reducing the impact of gravity)
- Stomach crunches
- Back strengthening exercises lying down
- Resistance band exercises for ankles and hamstrings
- Leg crossing exercises (right leg in front of left leg, and squeeze legs for 45 seconds at a time) to keep more blood in my chest area
- Self-Tilts (back against the wall with legs out 1-1.5 feet. Trains blood vessels for better blood return to my heart)
- If I do an exercise standing up, I follow it with a few exercises lying down.
- I do very frequent heart rate checks!
- After doing my exercises I use my cervical traction unit to help with neck/head pain and spasms.
- More WATER, SALT, and COMPRESSION STOCKINGS.
- I take my blood pressure and heart rate lying down and then standing up and record it for my doctor (It needs to be done the same time everyday)
- I eat lunch (salty!) and drink a big glass of orange Gatorade with my lunch. In the Gatorade, I add 5,000 IU's of Vitamin D Drops, and a teaspoon of super potent Vitamin C Biofizz.
- More WATER, SALT, and COMPRESSION STOCKINGS.
- I am usually beat by this time of day, so I use the afternoons for things like researching, blogging, emailing, and making phone calls.
- I often use my TENS unit, Muscle Spasm Unit, Ice, and/or my massage pillow while I do these things.
- More WATER, SALT, COMPRESSION STOCKINGS.
- Dinner with added sea salt.
- If I am feeling okay, I try and do some more exercises after dinner that help re-train the blood vessels to return blood to my heart (more self tilts, toe rises, squats, and leg cross squeezes).
- After dinner I have been reading books about other people who have overcome their chronic illnesses for my own mental treatment.
- WATER, SALT, COMPRESSION STOCKINGS.
- I still need to work on elevating my head while I sleep to help retain fluid in my body overnight.
- Hopefully by now I will have had my 3 liters of liquid and my 4 grams of salt. But I am still wearing cute COMPRESSION STOCKINGS.
- Before bed I take medication to help regulate my Autonomic Nervous System and to help me sleep (sleep problems are a major symptom of Dysautonomia) and I take Singulair and Advair for my asthma and allergies. I take an Ibuprofen 800 if I am in pain.
- Soy Sauce
- Tomato sauce
- Canned Green Beans
- Canned Jalapeno Peppers
- Baked Beans with Pork
- Ramen Noodles
- Tomato Soup
- Chicken Noodle Soup
- Microwave Butter Popcorn
- Tuna in Water
- Green Olives
- Dill Pickles
- Tomato Juice
- V8
- Gatorade
Obviously this is just a beginning plan and it will most likely need to be tweaked as I continue on this journey to get better. To end this pretty boring post, I wanted to add the song that goes through my head every time I am looking for salty foods to eat (click on the link below). I think you are probably starting to get the idea that I am a true Parrothead at heart!.
Salt! Salt! Salt!
Monday, November 22, 2010
11/22/10 Thankful
Today I am thankful for the technology I have that keeps me connected, brings me joy, and gives me an occasional escape. I am thankful for my computer. It allows me to research so many topics including options for the best treatment plan. It allows me to talk to family and friends through email and Facebook. I am thankful for my Ipod for keeping me sane when Brad is at work. I listen to it all day and it provides me with such peace. There has been so many times that listening to music has been a pick me up for when I have been down. I am thankful for my cell phone. I am constantly on it during the day talking to doctors, nurses, front desks, therapists, friends, and family. I am thankful for our TV and that it provides me the means to watch my favorite shows, Glee, Grey's, Real Housewives, Regis and Kelly, Oprah, The Today Show, The Office, and Modern Family. I am thankful for DVR. I think it is pretty much the best invention ever. I am thankful for my plug-in massage pillow, my cervical traction unit, my TENS unit, and my heating pad. I am thankful for our microwave because I can't cook.
Sunday, November 21, 2010
11/21/10 Thankful
Today I am thankful for the Herner family. They have been family since I was born. I am thankful for all of the vacations we have spent together, all of the Sunday night dinners we have had, all of the "porch sitting" times we spent together in the summer, all of the Christmas Eves we have celebrated together, I could go on and on...
I am thankful for Sue, who is another mother to me and Doug who is another father to me. I am thankful that I can walk into their house, no matter the time, without knocking like it is my house. I am thankful to know that they would do anything for me, and all I have to do is ask.
I am thankful for the big brother example DJ has always been to me. I am thankful for Holly and her ability to always cheer up any situation (as well as how she used to curl my bangs when I was a kid and spray them with Rave Hair Spray so they would be just like hers). When I was a kid I used to love when DJ and Holly both let me hang out with their friends because everything they did was always so cool to me.
I am thankful that although we may not be blood, they will ALWAYS be family.
I am thankful for Sue, who is another mother to me and Doug who is another father to me. I am thankful that I can walk into their house, no matter the time, without knocking like it is my house. I am thankful to know that they would do anything for me, and all I have to do is ask.
I am thankful for the big brother example DJ has always been to me. I am thankful for Holly and her ability to always cheer up any situation (as well as how she used to curl my bangs when I was a kid and spray them with Rave Hair Spray so they would be just like hers). When I was a kid I used to love when DJ and Holly both let me hang out with their friends because everything they did was always so cool to me.
I am thankful that although we may not be blood, they will ALWAYS be family.
Saturday, November 20, 2010
11/20/10 Thankful
Today I am thankful for my wheelchair, Wilemena. We have had a love-hate relationship from the beginning but I am realizing more and more that she allows me to do normal things and gives me more freedom than if I didn't have her. So I am sorry Wilemena for cursing your name so many times. I am thankful that you are a pretty sweet and comfy ride. I am thankful that you are very light. I will get to decorating you soon.
Friday, November 19, 2010
Five for Friday 11/19/10
1. Allie came home for less than 24 hours for a wedding. It was kind of a tease but at least she'll be back in a week. We had enough time for a picture though.
2. I got to go shopping at an H & M while we were in Fort Wayne. I heart that store.
3. I got new reading glasses.
4. My friend Yoon came over with her new baby Emily to visit. Yoon is a natural Mommy and Emily is perfect!
5. I traveled to Cleveland Clinic on Tuesday with Brad and was diagnosed with POTS. I traveled to Fort Wayne on Thursday with my Mom for a nerve block in my head for headaches, and I was diagnosed with Ehlers Danlos.
What a week!
2. I got to go shopping at an H & M while we were in Fort Wayne. I heart that store.
3. I got new reading glasses.
4. My friend Yoon came over with her new baby Emily to visit. Yoon is a natural Mommy and Emily is perfect!
5. I traveled to Cleveland Clinic on Tuesday with Brad and was diagnosed with POTS. I traveled to Fort Wayne on Thursday with my Mom for a nerve block in my head for headaches, and I was diagnosed with Ehlers Danlos.
What a week!
11/19/10 Thankful
Today I am thankful for the other side of my family; all of the Jaskolski's. I am thankful for my mother and father-in-law, Tom and Lee, my other sisters, Jill, Audrey,and Steph, and my other brothers, Chris, Daric, and Jay. I am thankful for everything they do for us. I am thankful that the Jaskolski's believe that family always comes first. I am so lucky to have married into such an amazing and loving family. I am thankful and proud to call myself a Jaskolski. I love you all!
(And I want to wish my father-in law, Tom a very Happy Birthday!)
(And I want to wish my father-in law, Tom a very Happy Birthday!)
Thursday, November 18, 2010
11/18/10 Thankful
Today I am thankful for my diagnoses. After many, many months I finally have my answers: POTS and Ehlers Danlos Syndrome. I am thankful that the phase of figuring out what is wrong with me is finally over. I am thankful that it only took me 11 months to get a POTS and EDS diagnosis since it often takes others years to be diagnosed with POTS and EDS because there is not much known about these disorders. I am thankful to be entering the second phase of this journey which is figuring out a plan of attack to learn how to become functional again and manage POTS and EDS. I am thankful to have the opportunity to educate others about these disorders and help spread awareness. Tonight, I am a tired girl. I'm an emotional girl. But I'm a thankful girl.
Wednesday, November 17, 2010
Finally
After 11 long months, I have my first answer. I went to Cleveland yesterday to get the results from my autonomic nervous system testing. I went into the appointment with low expectations, most of all to protect myself. I had been through so many other appointments to only find myself frustrated and disappointed when I was told that the test results did not show anything. The doctors would tell me to celebrate the negative results but honestly this was hard when I still knew something was really wrong, and I didn't know what it was. I would leave many specialist's office feeling like a crazy person when I was told my tests were normal, or that they came back "beautiful," while I was still having crazy symptoms that made me sick.
So I have to admit that with each negative result, I would go home and return to researching what could be making me sick. And as many of you know, my computer would often have to be taken from me because the Internet can be a scary, scary place. A lot of the "possible diagnosis's" I found that fit my symptoms were terrifying for a worry wart like me.
So yesterday, to protect myself from more frustration, I went in prepared to hear that again, the results were normal. The doctor came in and the first thing he said was, "So, what do you have?" This took me by surprise and I said "Excuse me?" He said again, "So what do you have?" So I went out on a limb and I said (based on my Internet research and what I knew from the tilt table results), "Ummm, I think I could have POTS." The doctor smiled, stuck out his hand, and shook my hand. He said, "You are good."
So there it was, my first official diagnosis. Postural Orthostatic Tachychardia Syndrome, a form of dysautonomia. He explained that my QSART test was abnormal, indicating Autonomic dysfunction, and my tilt table results confirmed the diagnosis of POTS.
Basically, the definition of POTS is:
"Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising.
So I have to admit that with each negative result, I would go home and return to researching what could be making me sick. And as many of you know, my computer would often have to be taken from me because the Internet can be a scary, scary place. A lot of the "possible diagnosis's" I found that fit my symptoms were terrifying for a worry wart like me.
So yesterday, to protect myself from more frustration, I went in prepared to hear that again, the results were normal. The doctor came in and the first thing he said was, "So, what do you have?" This took me by surprise and I said "Excuse me?" He said again, "So what do you have?" So I went out on a limb and I said (based on my Internet research and what I knew from the tilt table results), "Ummm, I think I could have POTS." The doctor smiled, stuck out his hand, and shook my hand. He said, "You are good."
So there it was, my first official diagnosis. Postural Orthostatic Tachychardia Syndrome, a form of dysautonomia. He explained that my QSART test was abnormal, indicating Autonomic dysfunction, and my tilt table results confirmed the diagnosis of POTS.
Basically, the definition of POTS is:
"Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising.
While the hallmark of POTS is an excessive heart rate increment upon standing, patients often exhibit numerous symptoms of autonomic nervous system dysregulation, and research by the Mayo Clinic suggests POTS is a limited autonomic neuropathy (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007). Many POTS symptoms seem to be caused by an imbalance of the autonomic nervous system's control over blood flow. It is the autonomic nervous system (ANS) that regulates the needed adjustments in vascular tone, heart rate and blood pressure upon standing. Some of the messages coming from the autonomic nervous system tell the blood vessels to relax or tighten. In people with POTS, the system seems to be out of balance and blood is not going to the right place at the right time to do what the body needs (Fischer, 2007).
(Found on http://www.dinet.org/), which by the way, is a great site to learn a lot more about POTS.
(Found on http://www.dinet.org/), which by the way, is a great site to learn a lot more about POTS.
We talked about the basics of POTS; that no one really knows how you get it. That pregnancy can make it worse. That treatments are very much trial and error for each person with POTS.
The doctor went over the treatment plan he will be starting me with:
The doctor went over the treatment plan he will be starting me with:
1. I am starting a Beta Blocker to help slow my racing heart. The Beta Blocker helps prevent the veins from opening too much, and will hopefully help cause an increase in blood pressure.
2. I am to drink 3 liters of liquids a day to help raise my blood pressure. (I'm gonna be peeing like a race horse). He specifically mentioned Gatorade because of the sodium.
3. I am to eat LOTS and LOTS of salt to help retain all the liquids I will be drinking to prevent too much blood pooling in my veins. Dill pickles, tomato juice, and soy sauce for me.
4. I am to wear compression stockings (cute, huh?) to prevent pooling and to help keep blood flowing back to my brain.
5. I am to elevate the head of my bed to help keep more fluid in my body overnight.
6. To improve vascular tone I am to do exercises such as water jogging and toe raises.
7. I am to continue taking 600 mg. of CO Q 10 a day because he said that my problems could be stemming from mitochondrial issues.
8. I am to begin taking an SSRI (antidepressant) because of the effect that Serotonin has on the Autonomic Nervous System. (I still need to learn more about this)
8. I am to begin taking an SSRI (antidepressant) because of the effect that Serotonin has on the Autonomic Nervous System. (I still need to learn more about this)
I am also getting more blood work done to test my Serotonin and Catecholamines.
It was explained that Beta Blockers work for some and not others, and what works well for one "POTSY" may not work for another so I will just have to wait and see.
I know I still have a lot to learn, and quite a few lifestyle changes to make. But the GREAT news is I finally have an answer and a start for how to try and treat it. Knowledge is POWER!
And to try and find some humor in the whole thing, you can now refer to my sister Allie and I as the POTS and PAN (Polyarteritis Nodosa) sisters. To quote Jimmy Buffett, "If we couldn't laugh, we would all go insane.."
Now on to the geneticist tomorrow to see about Ehlers Danlos...Stay tuned.
And to try and find some humor in the whole thing, you can now refer to my sister Allie and I as the POTS and PAN (Polyarteritis Nodosa) sisters. To quote Jimmy Buffett, "If we couldn't laugh, we would all go insane.."
Now on to the geneticist tomorrow to see about Ehlers Danlos...Stay tuned.
11/17/10 Thankful
Today I am thankful for the nurses and doctors I have seen in the last year who have gone above and beyond to help me. I am thankful for honest doctors who are straight with me. I am thankful for doctors who let me know in their own way that they will do what is in their power to help me. I am thankful for doctors who are not afraid to admit that my symptoms are beyond their expertise so they help find me someone who can fit my needs.
There are a few amazing doctors I feel I specifically need to mention.
Yesterday I saw Dr. Chemali, the neuromuscular doctor, at the Cleveland Clinic about my autonomic nervous system results. I was super nervous and did not know what to expect. Both Dr. Chemali's nurse and Dr. Chemali treated me as one of their family members. They both spent so much time with me, and answered all of my questions. And I had a LOT of questions. The office closed at 5 and I was there until 6:30 with Dr. Chemali. He told me he would help me and walked both Brad and I out. He gave me a hug and said to just call him if I needed anything. I asked if he would talk to my other doctors, and he said he would talk to anyone. Then he said, "I will come to you." I still don't know if he was joking or serious. Dr. Chemali was the first doctor to provide me with my first answer since I started seeing specialists. I am thankful that Dr. Chemali treated me like a person, not a patient.
I am thankful for Dr. Rosen, my psychiatrist. I have been with him since I was 18, when gymnastics ended and I had a lot to sort through. He has been seeing me for 11 years and knows me better than most people. If I email him, he is back to me within an hour. If I need to see him, he always fits me in. He is so good at helping me gain perspective. When I leave his office I feel like I can take a deep breath again. I am lucky to call him my doctor and I've told him he's not allowed to ever retire :)
Then there's Larry (aka Dr. Nassar). If I said everything I was thankful for about him, this post would be 20 pages long. Larry is much more than a doctor. He is my friend. I have known Larry since I was about 5, when he was the athletic trainer at the gym. He has helped me (and my family) through so many injuries, health issues, surgeries, and life in general. I am thankful for the times in college he would take me to eat at Lou and Harry's and then Baskin Robbins to just talk. I am thankful that he and his wife Stefanie gave me the opportunity to tutor Caroline and babysit his beautiful kids. I am thankful that when I had surgery in Cleveland on my elbow, he came with my family, and watched the surgery in the operating room.
This past year, Larry has been my life-line in helping me wade through all of the medical stuff. He has spent so much time researching and finding me the best doctors and therapists to send me too. He has spent hours on the phone talking to doctors to make sure I would be in the best hands. He has called and worked his magic to get me in to specialists fast. He has called or messaged me often to see how I was doing. I really owe the fact that I am finally getting to answers to Larry. I am not sure where I would be in this process without him. I love you Larry! There is not another doctor like you. You are the BEST!
There are a few amazing doctors I feel I specifically need to mention.
Yesterday I saw Dr. Chemali, the neuromuscular doctor, at the Cleveland Clinic about my autonomic nervous system results. I was super nervous and did not know what to expect. Both Dr. Chemali's nurse and Dr. Chemali treated me as one of their family members. They both spent so much time with me, and answered all of my questions. And I had a LOT of questions. The office closed at 5 and I was there until 6:30 with Dr. Chemali. He told me he would help me and walked both Brad and I out. He gave me a hug and said to just call him if I needed anything. I asked if he would talk to my other doctors, and he said he would talk to anyone. Then he said, "I will come to you." I still don't know if he was joking or serious. Dr. Chemali was the first doctor to provide me with my first answer since I started seeing specialists. I am thankful that Dr. Chemali treated me like a person, not a patient.
I am thankful for Dr. Rosen, my psychiatrist. I have been with him since I was 18, when gymnastics ended and I had a lot to sort through. He has been seeing me for 11 years and knows me better than most people. If I email him, he is back to me within an hour. If I need to see him, he always fits me in. He is so good at helping me gain perspective. When I leave his office I feel like I can take a deep breath again. I am lucky to call him my doctor and I've told him he's not allowed to ever retire :)
Then there's Larry (aka Dr. Nassar). If I said everything I was thankful for about him, this post would be 20 pages long. Larry is much more than a doctor. He is my friend. I have known Larry since I was about 5, when he was the athletic trainer at the gym. He has helped me (and my family) through so many injuries, health issues, surgeries, and life in general. I am thankful for the times in college he would take me to eat at Lou and Harry's and then Baskin Robbins to just talk. I am thankful that he and his wife Stefanie gave me the opportunity to tutor Caroline and babysit his beautiful kids. I am thankful that when I had surgery in Cleveland on my elbow, he came with my family, and watched the surgery in the operating room.
This past year, Larry has been my life-line in helping me wade through all of the medical stuff. He has spent so much time researching and finding me the best doctors and therapists to send me too. He has spent hours on the phone talking to doctors to make sure I would be in the best hands. He has called and worked his magic to get me in to specialists fast. He has called or messaged me often to see how I was doing. I really owe the fact that I am finally getting to answers to Larry. I am not sure where I would be in this process without him. I love you Larry! There is not another doctor like you. You are the BEST!
Tuesday, November 16, 2010
11/16/10 Thankful
Today I am thankful for my Dad and the special relationship I have always shared with him. I guess you could say I have always been a Daddy's girl. I am thankful that I inherited his sense of humor, his love for traditions, his love for giving everyone nicknames, his love for Jimmy Buffett, and most of all his belief that family comes first. I am thankful that we have a relationship where we can tell each other like it is. I am thankful for everything he still does for me; whether it is picking up prescriptions, cooking dinner on weekday nights, driving me where I need to go...I am thankful he still calls me "Goosey" even though I am not six anymore. I love you Dad.
Monday, November 15, 2010
11/15/10 Thankful
Today I am thankful for Brad's foot rubs he gives me each night to help me fall asleep.
29
I love my birthday. I always have. There is a running joke in our family that my birthday is the "Month of Katie." I have always loved to prolong my birthday well into the month of November. I am not sure why I love it so much. I just do. So this year, with Brad and my family knowing full well that I love my birthday, they kept asking me what I wanted for my birthday, what I wanted to do for it, yadda, yadda, yadda...
Because I wasn't doing so hot at that time, I was being a major grump about it. I kept saying, "I don't want do do anything." Or "I'm not celebrating 29 until I have a diagnosis." or "I just want to skip it."
But the funny thing is 29 ended up being my most special birthday yet.
My sister, Allie was supposed to start her new job as a case manager the week of my birthday. However, her starting date ended up getting pushed back a week. With her extra week off, she ended up booking a ticket so she could be with me on my birthday. I kept telling her not to. I told her I wasn't fun and I had been having a lot of sick days. I told her it wasn't worth the money.
But she came anyway. Allie flew in on Tuesday and my birthday was on Wednesday. On Wednesday Allie and I got up and she took me to my first arthritis swim class with Bernice and Esther. Everyone in the class thought I was the instructor, so they were surprised to learn I was there just like them to work my joints in less gravity. Boy did I have to answer a lot of questions at that swim class. Afterwards, Allie took me to the 12:15 Wednesday mass at St. John's. We were supposed to go to the mall afterwards but I was feeling really sick so we decided to go back to my house and we watched a channel we both share a love for: Bravo. My Dad made my very favorite dinner; stuffed shells. Brad got me the most perfect monkey card and he brought home a beautiful bouquet of my absolute favorite flower-Gerber Daisies!
Despite the circumstances, it was a good day.
Then a week later, my birthday became even more special. I was surprised with a very unexpected present. I found out that a parent of one of the students I used to teach had organized a spaghetti dinner at her church to help raise money for out of pocket medical expenses for Brad and I to use for things like gas to and from doctors appointments, hotel stays in Cleveland, supplements, co pays, etc. I learned that the dinner occurred on October 20th. My birthday. And what is funny is that this very special parent didn't even realize that October 20th was my birthday.
When this parent came over with another very special friend who had also helped organize a lot of the event, to tell me about it, and bring the cards, donations, and notes of love and support that had been collected I truly was speechless. I couldn't wrap my head around the fact that so many students and families, staff members, and community members had shown up just for me. It still blows me away and brings tears to my eyes every time I think about it.
This amazing act of kindness that I will never ever forget along with being surrounded by my family and support system on my birthday; whether in person, through Skype, on the telephone, through text messages, or through facebook messages really made me aware that turning 29 was not about the gifts to unwrap or the places to go, but instead about the gifts I already have that I need to embrace each and every day. 29 has been my most memorable and meaningful birthday to date thanks to so many special people.
Because I wasn't doing so hot at that time, I was being a major grump about it. I kept saying, "I don't want do do anything." Or "I'm not celebrating 29 until I have a diagnosis." or "I just want to skip it."
But the funny thing is 29 ended up being my most special birthday yet.
My sister, Allie was supposed to start her new job as a case manager the week of my birthday. However, her starting date ended up getting pushed back a week. With her extra week off, she ended up booking a ticket so she could be with me on my birthday. I kept telling her not to. I told her I wasn't fun and I had been having a lot of sick days. I told her it wasn't worth the money.
But she came anyway. Allie flew in on Tuesday and my birthday was on Wednesday. On Wednesday Allie and I got up and she took me to my first arthritis swim class with Bernice and Esther. Everyone in the class thought I was the instructor, so they were surprised to learn I was there just like them to work my joints in less gravity. Boy did I have to answer a lot of questions at that swim class. Afterwards, Allie took me to the 12:15 Wednesday mass at St. John's. We were supposed to go to the mall afterwards but I was feeling really sick so we decided to go back to my house and we watched a channel we both share a love for: Bravo. My Dad made my very favorite dinner; stuffed shells. Brad got me the most perfect monkey card and he brought home a beautiful bouquet of my absolute favorite flower-Gerber Daisies!
Despite the circumstances, it was a good day.
Then a week later, my birthday became even more special. I was surprised with a very unexpected present. I found out that a parent of one of the students I used to teach had organized a spaghetti dinner at her church to help raise money for out of pocket medical expenses for Brad and I to use for things like gas to and from doctors appointments, hotel stays in Cleveland, supplements, co pays, etc. I learned that the dinner occurred on October 20th. My birthday. And what is funny is that this very special parent didn't even realize that October 20th was my birthday.
When this parent came over with another very special friend who had also helped organize a lot of the event, to tell me about it, and bring the cards, donations, and notes of love and support that had been collected I truly was speechless. I couldn't wrap my head around the fact that so many students and families, staff members, and community members had shown up just for me. It still blows me away and brings tears to my eyes every time I think about it.
This amazing act of kindness that I will never ever forget along with being surrounded by my family and support system on my birthday; whether in person, through Skype, on the telephone, through text messages, or through facebook messages really made me aware that turning 29 was not about the gifts to unwrap or the places to go, but instead about the gifts I already have that I need to embrace each and every day. 29 has been my most memorable and meaningful birthday to date thanks to so many special people.
Sunday, November 14, 2010
11/14/10 Thankful
Today I am thankful for my faith. I am thankful that through this tough time I have had my faith to lift me up, and I am thankful that I feel that in the last year I have continued to grow in my faith. I am thankful for Father Mark's homily about perseverance today. It was just what I needed to hear. I am thankful that in church today we sang, "Be Not Afraid." It was just what I needed to sing. I am thankful that when I feel I can't do it, and I start to get angry with God, I think of the famous Footprints story and it brings me immense comfort. I am thankful that although I may not understand or know what it is yet, God has a plan for me.
Footprints in the Sand
One night I dreamed I was walking along the beach with the Lord.
Footprints in the Sand
One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there was one only.
This bothered me because I noticed that during the low periods of my life,
when I was suffering from anguish,
sorrow or defeat,
I could see only one set of footprints,
so I said to the Lord,
“You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during the most trying periods of my life
there has only been one set of footprints in the sand.
Why, when I needed you most, have you not been there for me?”
The Lord replied,
“The years when you have seen only one set of footprints,
my child, is when I carried you.”
-1984 Mary Stevenson
Saturday, November 13, 2010
11/13/10 Thankful
Today I am thankful for all of my nieces. They are all so beautiful and such bright spots in my life. I love you Cecilia, Jameson, Cameron, Kendall, and Casey!
What Does Sick Look Like?
This post is not meant to offend anyone. But it is something that I constantly experience on a day to day basis. I know in my heart people mean well. And that they want to pay me a compliment. But I also feel that at times people are trying to make sense of it all when I am told, "But you don't look sick." "But you look so great." "I've never seen you look better." "But you look so beautiful."
It has forced me to ask myself, in society's view, what does sick look like? Does one have to have sunken eyes, pale skin, and look close to death to be considered sick? Because I have lost weight (unintentionally), still wear make up, and do my hair each day, does that make me healthy to outsiders? In all fairness, 6 months ago, if I were able to step out of myself and look at me with outsider eyes, I would have made the same comments. But yet another life lesson I have learned is that no matter how great someone appears on the outside, you never know what they may be going through; illness, loss, pain...
Throughout this ordeal, I have struggled with how to respond and explain to people, that even though I may look "normal" I still have an illness that is keeping me from functioning normally. The terms "invisible illness" has taken on so much more meaning now that I am living it. Some days I respond to "but you don't look sick," with a simple "thank you." Other times I say, "Well I wish I felt as good as I look."
What people don't know is that although my hair and makeup may be done, and although I may look put together like my normal, "healthy" self, the process of getting ready for the day now requires many rest breaks, many checks of my heart rate, many periods of lying down, and basically 10 times the energy that it used to take to make myself look presentable. Or that after I take a shower, I usually need a good 30 minutes to recover by laying down with my legs up so the blood that has pooled in my legs can return back up to my brain, to help make my headaches and nauseousness go away. Or that when I do truly look sick, I am usually not out in public where people can see the "sickly" me.
Through these last six months, I have found that my days require a lot of conscious decision making and prioritizing as to what needs to be done. When I wake up in the morning I have to assess the day. If I have a doctor's appointment in the afternoon, I know I have to really pace myself in the morning with normal activities-making breakfast, showering, doing my exercises so that I am not too sick by the afternoon. If cleaning the house is a goal for that day, I have to pick what needs to be done the most. If I choose dusting, I often have to leave vacuuming for the next day. My life has changed a lot in terms of day to day happenings. What I used to take for granted now constantly requires conscious attention and decision making, as to if I will be able to make it through without getting too sick to ruin the rest of the day. It is a definite balancing act.
I explain this, not for sympathy, but because I cannot fault people for not understanding me and what I'm going through, if I do not try and explain it. Because of this invisible illness, I have been forced to cancel many plans the last months because of sickness. I appreciate all of you who have been understanding and patient with me when this happens. Hopefully as I continue to move forward, the "simple" things I used to do will get easier again.
There is something called the spoon theory that many people use to describe to their loved ones what life is like with an invisible illness. A lot of the spoon theory is so applicable to my life at this time. The Spoon Theory was written by Christine Miserandino who has Lupus, an autoimmune connective tissue disease. My hope is that by reading this, people will have a better understanding of what a typical day is like for me.
Because the spoon theory is copyrighted, I am not sure if I can legally copy and paste it on my blog. But I will post the link, and encourage you all to read it; not just for me, but because there are so many other people out there who are also living with various invisible illnesses.
http://www.butyoudontlooksick.com/wpress/wp-content/uploads/2010/02/BYDLS-TheSpoonTheory.pdf
It has forced me to ask myself, in society's view, what does sick look like? Does one have to have sunken eyes, pale skin, and look close to death to be considered sick? Because I have lost weight (unintentionally), still wear make up, and do my hair each day, does that make me healthy to outsiders? In all fairness, 6 months ago, if I were able to step out of myself and look at me with outsider eyes, I would have made the same comments. But yet another life lesson I have learned is that no matter how great someone appears on the outside, you never know what they may be going through; illness, loss, pain...
Throughout this ordeal, I have struggled with how to respond and explain to people, that even though I may look "normal" I still have an illness that is keeping me from functioning normally. The terms "invisible illness" has taken on so much more meaning now that I am living it. Some days I respond to "but you don't look sick," with a simple "thank you." Other times I say, "Well I wish I felt as good as I look."
What people don't know is that although my hair and makeup may be done, and although I may look put together like my normal, "healthy" self, the process of getting ready for the day now requires many rest breaks, many checks of my heart rate, many periods of lying down, and basically 10 times the energy that it used to take to make myself look presentable. Or that after I take a shower, I usually need a good 30 minutes to recover by laying down with my legs up so the blood that has pooled in my legs can return back up to my brain, to help make my headaches and nauseousness go away. Or that when I do truly look sick, I am usually not out in public where people can see the "sickly" me.
Through these last six months, I have found that my days require a lot of conscious decision making and prioritizing as to what needs to be done. When I wake up in the morning I have to assess the day. If I have a doctor's appointment in the afternoon, I know I have to really pace myself in the morning with normal activities-making breakfast, showering, doing my exercises so that I am not too sick by the afternoon. If cleaning the house is a goal for that day, I have to pick what needs to be done the most. If I choose dusting, I often have to leave vacuuming for the next day. My life has changed a lot in terms of day to day happenings. What I used to take for granted now constantly requires conscious attention and decision making, as to if I will be able to make it through without getting too sick to ruin the rest of the day. It is a definite balancing act.
I explain this, not for sympathy, but because I cannot fault people for not understanding me and what I'm going through, if I do not try and explain it. Because of this invisible illness, I have been forced to cancel many plans the last months because of sickness. I appreciate all of you who have been understanding and patient with me when this happens. Hopefully as I continue to move forward, the "simple" things I used to do will get easier again.
There is something called the spoon theory that many people use to describe to their loved ones what life is like with an invisible illness. A lot of the spoon theory is so applicable to my life at this time. The Spoon Theory was written by Christine Miserandino who has Lupus, an autoimmune connective tissue disease. My hope is that by reading this, people will have a better understanding of what a typical day is like for me.
Because the spoon theory is copyrighted, I am not sure if I can legally copy and paste it on my blog. But I will post the link, and encourage you all to read it; not just for me, but because there are so many other people out there who are also living with various invisible illnesses.
http://www.butyoudontlooksick.com/wpress/wp-content/uploads/2010/02/BYDLS-TheSpoonTheory.pdf
Friday, November 12, 2010
11/12/10 Thankful
Today I am thankful for the bond my siblings and I share. I am thankful for Allie's sense of humor, our goofiness together, and everything she teaches me about courage and perseverance. I am thankful for Andy's passion and intensity for everything he puts his mind to. I am thankful that he always gives me a hard time and makes me laugh, and that he shows me (once in a while) that he really is a teddy bear under that tough exterior. I am thankful for Kristen's big sister wisdom and I look up to how she is able to take everything in stride. I am thankful for everything she teaches me about compassion, thinking about others first, and listening to both sides before making judgements. Most of all I am thankful for the times we are all in the same place because there really is nothing else like it.
Signs
So I just have to tell this story because it gets me teary-eyed every time.
Last week when Brad and I were on the road to Cleveland to go for my autonomic nervous system testing, my Mom called to see how my day was going. She and my Dad had been in Philly visiting Kristen, Jake, and the beautiful Cecilia Jane. They were headed to BWI airport and we both still had a couple hours left to be in the car. At the moment she called I was struggling. My back and head hurt, I was nervous, and I was experiencing the anxiety that a trip to Cleveland Clinic usually brings. I was trying like heck to hold it together. Sensing that I was near a meltdown, my Mom went into her pep talk, pick my spirits up, cheerleader mode.
She reminded me of how when Allie was in the hospital for 46 days in Maryland, there were days they honestly did not know if the doctors would ever figure out what was wrong with her. But she went on to tell me how there were certain doctors who were obviously not going to give up for anything. She specifically talked about Dr. Ferentz and the care and determination he brought to Allie's medical team. One day when Allie was in the hospital, Dr. Ferentz ordered a kidney biopsy. He insisted they needed it to see if it showed anything. However, the other doctors on her team pretty much laughed at him and said a kidney biopsy was unnecessary. But Dr. Ferentz INSISTED. So they went ahead and did the biopsy voicing that it would not show anything. Well, sure enough when the results came in, the doctors reported that they FINALLY had answers. Because of that biopsy that most of the doctors saw as useless, Allie was diagnosed with Polyarteritis Nodosa Vasculitis. Basically Dr. Ferentz was the doctor who saved Allie's life.
My Mom reminded me that because of Dr. Ferentz (and other wonderful doctors who are treating Allie now) Allie has her life back. She is working, getting ready to apply to Grad schools, and living life like a 22 year old. My Mom told me that this too would happen for me. I just needed to keep moving forward, and I needed to continue seeing great doctors and having tests until I get there. She said I will have my "Dr. Ferentz(s)" too. We hung up the phone and I felt calmer.
After we arrived to Cleveland Clinic Guest House, we checked in, got settled in the room, Brad worked on report cards while I watched Oprah. Right before we were about to head down for dinner, my phone rang. It was my Mom and I thought she was calling to tell me that they landed safely in Detroit. However, I could tell in her voice she had more to say. She said, "I have to tell you something."
She said, "Remember how three hours ago I told you about Dr. Ferentz as Allie's life saver and everything he did to make sure Allie was taken care of? Well, we were sitting on the plane and a man was putting his bag in the overhead. I happened to look up and I did a double take. I said, "Dr. Ferentz?" He said, "Mary?"
It turns out he was headed to Michigan for one day to speak at a conference. They got to talking and my Mom told him she had just talked about him a few hours earlier to help me know that there will be doctors like him who will help me get my life back, like he did for Allie. As they caught up he wanted to know how my Dad was doing since he had Prostate cancer when Allie was in the hospital. He wanted to know if Allie graduated, and was so proud when my Mom told him she had, and was now working. They talked about me and he reassured my Mom that I was on the right track. They parted ways in the Detroit airport, with him telling my Mom that he wants to get Allie in touch with his wife who is a psychotherapist to help her with Psych grad school decisions. He said, "Mary, there is a reason I was put on this plane."
I believe this too. How do you explain that of all the flights, on all the days, and all the times, that Dr. Ferentz found himself on the same flight as my parents that day? My Mom had just talked to me about Dr. Ferentz THAT DAY at length about how he had saved my sister's life because he was not willing to give up or leave any stone unturned. And then there he was, in the flesh, 3 hours later on that airplane.
Honestly, I believe that God put Dr. Ferentz on that plane for my Mother and Father. They have been through so much with two of their daughters being sick in the last three years. I think Dr. Ferentz's presence on that plane was to let my parents know that everything will be alright. He is after all a symbol of life in their eyes because of where Allie is today.
You may disagree and that is okay. You may just see it as a mere coincidence. But I don't. I believe that this story illustrates that the Big Guy upstairs really knows what he is doing.
Last week when Brad and I were on the road to Cleveland to go for my autonomic nervous system testing, my Mom called to see how my day was going. She and my Dad had been in Philly visiting Kristen, Jake, and the beautiful Cecilia Jane. They were headed to BWI airport and we both still had a couple hours left to be in the car. At the moment she called I was struggling. My back and head hurt, I was nervous, and I was experiencing the anxiety that a trip to Cleveland Clinic usually brings. I was trying like heck to hold it together. Sensing that I was near a meltdown, my Mom went into her pep talk, pick my spirits up, cheerleader mode.
She reminded me of how when Allie was in the hospital for 46 days in Maryland, there were days they honestly did not know if the doctors would ever figure out what was wrong with her. But she went on to tell me how there were certain doctors who were obviously not going to give up for anything. She specifically talked about Dr. Ferentz and the care and determination he brought to Allie's medical team. One day when Allie was in the hospital, Dr. Ferentz ordered a kidney biopsy. He insisted they needed it to see if it showed anything. However, the other doctors on her team pretty much laughed at him and said a kidney biopsy was unnecessary. But Dr. Ferentz INSISTED. So they went ahead and did the biopsy voicing that it would not show anything. Well, sure enough when the results came in, the doctors reported that they FINALLY had answers. Because of that biopsy that most of the doctors saw as useless, Allie was diagnosed with Polyarteritis Nodosa Vasculitis. Basically Dr. Ferentz was the doctor who saved Allie's life.
My Mom reminded me that because of Dr. Ferentz (and other wonderful doctors who are treating Allie now) Allie has her life back. She is working, getting ready to apply to Grad schools, and living life like a 22 year old. My Mom told me that this too would happen for me. I just needed to keep moving forward, and I needed to continue seeing great doctors and having tests until I get there. She said I will have my "Dr. Ferentz(s)" too. We hung up the phone and I felt calmer.
After we arrived to Cleveland Clinic Guest House, we checked in, got settled in the room, Brad worked on report cards while I watched Oprah. Right before we were about to head down for dinner, my phone rang. It was my Mom and I thought she was calling to tell me that they landed safely in Detroit. However, I could tell in her voice she had more to say. She said, "I have to tell you something."
She said, "Remember how three hours ago I told you about Dr. Ferentz as Allie's life saver and everything he did to make sure Allie was taken care of? Well, we were sitting on the plane and a man was putting his bag in the overhead. I happened to look up and I did a double take. I said, "Dr. Ferentz?" He said, "Mary?"
It turns out he was headed to Michigan for one day to speak at a conference. They got to talking and my Mom told him she had just talked about him a few hours earlier to help me know that there will be doctors like him who will help me get my life back, like he did for Allie. As they caught up he wanted to know how my Dad was doing since he had Prostate cancer when Allie was in the hospital. He wanted to know if Allie graduated, and was so proud when my Mom told him she had, and was now working. They talked about me and he reassured my Mom that I was on the right track. They parted ways in the Detroit airport, with him telling my Mom that he wants to get Allie in touch with his wife who is a psychotherapist to help her with Psych grad school decisions. He said, "Mary, there is a reason I was put on this plane."
I believe this too. How do you explain that of all the flights, on all the days, and all the times, that Dr. Ferentz found himself on the same flight as my parents that day? My Mom had just talked to me about Dr. Ferentz THAT DAY at length about how he had saved my sister's life because he was not willing to give up or leave any stone unturned. And then there he was, in the flesh, 3 hours later on that airplane.
Honestly, I believe that God put Dr. Ferentz on that plane for my Mother and Father. They have been through so much with two of their daughters being sick in the last three years. I think Dr. Ferentz's presence on that plane was to let my parents know that everything will be alright. He is after all a symbol of life in their eyes because of where Allie is today.
You may disagree and that is okay. You may just see it as a mere coincidence. But I don't. I believe that this story illustrates that the Big Guy upstairs really knows what he is doing.
Five for Friday 11/12/10
1. Celebrated Daylight Savings by eating at Panera, and taking a trip to Target. We bought checkers and chess and I plan on beating Brad as soon as he gets brave enough to play me.
2. Started watching the first season of Modern Family since we just started watching it this season. Man is that show hilarious.
3. Started drinking Dr. Joe's Magic Green Potion to bring down inflammation (will post more about that later). I also received some fancy medical equipment-a TENS unit for pain, a muscle stimulator for muscle spasms, and a cervical traction unit.
4. Emailed a doctor out of the blue in Mishawaka, Indiana about prolotherapy. Did not know if I would hear back but I did within a few hours. Some doctors really, really care.
5. Meghan and Jackson came to visit! I loved seeing them and could not believe how big Jackson is getting! I can't wait for our next visit soon. Hopefully it will involve CRANIUM!
Thursday, November 11, 2010
11/11/10 Thankful
Today I am thankful for all of the Veteran's and people who are currently serving our country. Thank you for being the 1% of the population that makes so many sacrifices for the other 99%. A special thank you to Aunt Mada, Uncle Brock, Uncle Richie, Gabe, and my brother, Andy! RIP Uncle Allen, Grandpa Humbie, Grandpa Dudley, and Grandma Gert.
Curveballs
September was the month I would be starting my 6th year of teaching. August was the month Brad and I were supposed to start trying to have a family. July was the month we were supposed to go to Gun Lake with friends
If the last year has taught me anything, it has taught me that life throws curve balls that are often beyond my control. This has been a very hard lesson for me to learn; one that is extremely hard to accept for a type A, control freak like myself. I have also learned that putting timelines on life doesn't always work out as well.
Throughout my life I have always been an overachiever and always experienced and believed that if I put my mind to something, I would make it happen one way or another. So when I left school in June, I remember telling my assistant that I was devoting the summer to getting healthy and when she saw me again in August to set up the classroom I would be healthy as ever. WRONG.
I worked and worked all summer trying to get better. I employed that same hard headed attitude that I always lived by, that if I worked hard at something it would happen. So as the end of August neared, anxiety hit an all time high as I was significantly worse than when I left in June. I was not anywhere near finding answers, my health continued to decline, and I had spent the whole summer seeing specialists, going to acupuncture, having spinal injections, having tests done, going to physical therapy, trying every diet and non traditional remedy suggested to me (besides marijuana), researching hours and hours for doctors and possible diagnoses, peeing in countless cups, spitting in countless tubes for saliva samples, giving vials and vials of blood, you get the idea...
At the end of August I was getting sick daily with trying to stand and walk. I remember waking up each day wondering if today was the day I was going to pass out. I also needed my hands to hold my mid back up and often hold my hips in place. I felt like I did not have enough hands to support my body.
But the thought of not returning to teaching because of these health issues was unbearable to me. I cried many, many times, not knowing how I would teach with the sickness and instability I was experiencing each day. But I also knew that I needed to be with those precious kids, because teaching was my love and I thought for my mental health I needed to do what I loved doing. I kept trying to wade through the concept of mental health vs. physical health. Plus I kept telling myself that so many families were counting on me.
The week before we were required to report back to school I went into denial mode, packed my car with my teaching materials, and told myself that I was stronger than this illness and I just needed to push through. I went to my classroom at the end of August and began to set up my classroom. I would set up a section of the room and then lay on the floor with the room spinning. I would set up another section and then run to the bathroom with dry heaves. I would crawl on my knees to gather materials so I did not have to stand up. The day my teaching assistant came in to help me she walked into the classroom to find me in hysterics. I felt so dizzy, my heart was racing, my eyesight was blurry, and I could not catch my breath. We talked for a long time about what I needed to do, and at that time I still didn't know. I was feeling so many emotions. But I knew that the harder I worked at pushing through the sicker I got. The more I worked at setting up the room, the more my back pain went off the charts.
The next day, after a long talk with my family, I realized I had to be honest with myself, and also fair to those 4 and 5 year olds who would be showing up in a week so excited about everything that is school-new backpacks, new crayons, having a name tag, recess, chocolate milk...I knew in my heart that I would not be able to return to work at that time, and do my job how it needed to be done. I strapped on my big girl boots and walked (very slowly while trembling) to have the dreaded medical leave conversation with my principal.
Our conversation could not have gone better. She was so loving and supportive and told me my health comes first, and that is what I needed to focus on. She told me that she would make sure the kids were in great hands while I continued to find answers, and therefore treatment. We even sat in her office and shared a Boost :) I will forever be grateful for the care my principal expressed for me and my family, and the advice she gave me about priorities-that health and family ALWAYS come first. I cried, thanked her, and left her office with a new task of figuring out the whole medical leave thing.
As I went home and figured out who would take over my classroom, everything seemed to fall into place. My assistant's daughter (who had subbed in my room last year) offered to take over for as long as I needed. She had just finished her internship in lower elementary and was more than qualified for taking over my pre-kindergarten and kindergarten classroom. It was such a relief to know my students would be in excellent hands, while I put my energy into finding answers and treatment options.
September 7th was a difficult day. While my students were starting their first day of school, I was at the cardiologist appointment close to collapsing on the treadmill during the stress test. It was really hard not to feel left behind. I was so frustrated that MY timeline for getting healthy did not work out.
Each day I am reminded of an important life lesson that I have learned at 29~that sometimes life takes twists and turns that are out of my control. However, despite my experiences during the last year, I still strongly believe that if I continue to work hard at getting better, it will eventually happen...it just may not happen on MY time. I believe starting a family will still happen-it just may not happen on OUR time. So I have been forced to throw out all timelines, and have embraced that getting my health back will be a marathon instead of a sprint.
If the last year has taught me anything, it has taught me that life throws curve balls that are often beyond my control. This has been a very hard lesson for me to learn; one that is extremely hard to accept for a type A, control freak like myself. I have also learned that putting timelines on life doesn't always work out as well.
Throughout my life I have always been an overachiever and always experienced and believed that if I put my mind to something, I would make it happen one way or another. So when I left school in June, I remember telling my assistant that I was devoting the summer to getting healthy and when she saw me again in August to set up the classroom I would be healthy as ever. WRONG.
I worked and worked all summer trying to get better. I employed that same hard headed attitude that I always lived by, that if I worked hard at something it would happen. So as the end of August neared, anxiety hit an all time high as I was significantly worse than when I left in June. I was not anywhere near finding answers, my health continued to decline, and I had spent the whole summer seeing specialists, going to acupuncture, having spinal injections, having tests done, going to physical therapy, trying every diet and non traditional remedy suggested to me (besides marijuana), researching hours and hours for doctors and possible diagnoses, peeing in countless cups, spitting in countless tubes for saliva samples, giving vials and vials of blood, you get the idea...
At the end of August I was getting sick daily with trying to stand and walk. I remember waking up each day wondering if today was the day I was going to pass out. I also needed my hands to hold my mid back up and often hold my hips in place. I felt like I did not have enough hands to support my body.
But the thought of not returning to teaching because of these health issues was unbearable to me. I cried many, many times, not knowing how I would teach with the sickness and instability I was experiencing each day. But I also knew that I needed to be with those precious kids, because teaching was my love and I thought for my mental health I needed to do what I loved doing. I kept trying to wade through the concept of mental health vs. physical health. Plus I kept telling myself that so many families were counting on me.
The week before we were required to report back to school I went into denial mode, packed my car with my teaching materials, and told myself that I was stronger than this illness and I just needed to push through. I went to my classroom at the end of August and began to set up my classroom. I would set up a section of the room and then lay on the floor with the room spinning. I would set up another section and then run to the bathroom with dry heaves. I would crawl on my knees to gather materials so I did not have to stand up. The day my teaching assistant came in to help me she walked into the classroom to find me in hysterics. I felt so dizzy, my heart was racing, my eyesight was blurry, and I could not catch my breath. We talked for a long time about what I needed to do, and at that time I still didn't know. I was feeling so many emotions. But I knew that the harder I worked at pushing through the sicker I got. The more I worked at setting up the room, the more my back pain went off the charts.
The next day, after a long talk with my family, I realized I had to be honest with myself, and also fair to those 4 and 5 year olds who would be showing up in a week so excited about everything that is school-new backpacks, new crayons, having a name tag, recess, chocolate milk...I knew in my heart that I would not be able to return to work at that time, and do my job how it needed to be done. I strapped on my big girl boots and walked (very slowly while trembling) to have the dreaded medical leave conversation with my principal.
Our conversation could not have gone better. She was so loving and supportive and told me my health comes first, and that is what I needed to focus on. She told me that she would make sure the kids were in great hands while I continued to find answers, and therefore treatment. We even sat in her office and shared a Boost :) I will forever be grateful for the care my principal expressed for me and my family, and the advice she gave me about priorities-that health and family ALWAYS come first. I cried, thanked her, and left her office with a new task of figuring out the whole medical leave thing.
As I went home and figured out who would take over my classroom, everything seemed to fall into place. My assistant's daughter (who had subbed in my room last year) offered to take over for as long as I needed. She had just finished her internship in lower elementary and was more than qualified for taking over my pre-kindergarten and kindergarten classroom. It was such a relief to know my students would be in excellent hands, while I put my energy into finding answers and treatment options.
September 7th was a difficult day. While my students were starting their first day of school, I was at the cardiologist appointment close to collapsing on the treadmill during the stress test. It was really hard not to feel left behind. I was so frustrated that MY timeline for getting healthy did not work out.
Each day I am reminded of an important life lesson that I have learned at 29~that sometimes life takes twists and turns that are out of my control. However, despite my experiences during the last year, I still strongly believe that if I continue to work hard at getting better, it will eventually happen...it just may not happen on MY time. I believe starting a family will still happen-it just may not happen on OUR time. So I have been forced to throw out all timelines, and have embraced that getting my health back will be a marathon instead of a sprint.
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