Today I am writing a long letter to update my doctors at Mayo. I really should have done this about 3 months ago, but it's been a little crazy in my life!
Writing this update is interesting. I am remembering back to the times when I have been the sickest and remembering times when my soul felt completely starved. There were days that seemed hopeless. My emotional bathtub was constantly overflowing. Just getting out of bed was a struggle. I was not only waging war against my body, but against my mind. When you're in constant pain for months on end, your mind considers things that otherwise would have seemed ludicrous.
Am I healed? Well, no.
Have I found grace to keep pressing on? Yes.
Does that make it all better?
No.
I still have about 50 bajillion questions to ask God someday. My theology and my mind have been stretched as I've sought answers to the endless parade of questions in my mind. My eyes still well up with tears when I think about those dark, dark days.
Psalm 23 says that God will be with us when we walk through "the valley of the shadow of death." Some translators have said that it could also be translated: "when I walk through the valley of deep, deep darkness." That's how it feels some days. And it is something that few people can understand (truly, no one can exactly understand your situation as each one is unique)
I have a new sensitivity for theologies of suffering. When someone else I hurting, I resist giving them the "pat Christians answers" that stings one's soul like lemon juice in a papercut.
Some days I think about the "friendly fire" in Christianity. When our own people are wounded and aching, why do we inflict more pain?
That's all I have for today. Nothing profound or new; just some reflections on living a hurting life.
p.s. As I was digging through all my papers from Mayo I found some wedding planning stuff. :) It's fun to remember that even at that "low point" my mom and I were planning for the future.
Showing posts with label Mayo Clinic. Show all posts
Showing posts with label Mayo Clinic. Show all posts
Wednesday, October 19, 2011
Saturday, May 14, 2011
Mayo Clinic Trip - Summary
Here is a summary post of my time at Mayo Clinic. I didn't end up posting about my appointments on Thursday and Friday, so I'll simply include those in here. (Honestly, I'm kind of sick about posting about doctors and illness so this might be short - of course feel free to ask questions if I didn't answer something).
Friday provided a lot of answers and we were so happy! We found out that I had correctly self diagnosed myself with an extremely, extremely rare illness. It's not really a happy diagnosis, but there is something wonderful about finally having a name. There is peace in having a name.
Overall we were very pleased with this trip to Mayo (our second trip). It was an exhausting six days and we are still recovering, but it was worth it. We received a lot of quality information for managing my primary illness as well as got medicine to help with my migraines. And finally, we got an official diagnosis from an expert in a very, very rare illness.
We worked to maintain eyes for beauty and to express gratitude each day. At times, Mayo seems so hopeless as there are suffering people all over the place. It is easy to get fixated on getting well and on finding relief. Yet I am reminded that more than needing a Healer for my body, I need a Healer for my heart.
Friday provided a lot of answers and we were so happy! We found out that I had correctly self diagnosed myself with an extremely, extremely rare illness. It's not really a happy diagnosis, but there is something wonderful about finally having a name. There is peace in having a name.
Overall we were very pleased with this trip to Mayo (our second trip). It was an exhausting six days and we are still recovering, but it was worth it. We received a lot of quality information for managing my primary illness as well as got medicine to help with my migraines. And finally, we got an official diagnosis from an expert in a very, very rare illness.
We worked to maintain eyes for beauty and to express gratitude each day. At times, Mayo seems so hopeless as there are suffering people all over the place. It is easy to get fixated on getting well and on finding relief. Yet I am reminded that more than needing a Healer for my body, I need a Healer for my heart.
Wednesday, May 11, 2011
Mayo Clinic Trip - Day Four
8 appointments down, three to go!!
Today was lots of riding back and forth between buildings. We started in Mayo, went to St. Marys, went back to Mayo and then ended at St. Marys. Since I had 5 appointments today, we never even found time for lunch!
Yesterday was mostly focused on lifestyle changes. Today was mostly focused on medication. We met with one of my main doctors today and were SO happy with the appointment! When we saw him in November, he hadn't left a very good impression. I've been dreading this meeting with him. But it was really helpful. He was so kind and he showed that he had spent a lot of time thinking about my specific case. That was a blessing.
I might post more later, but as for now, I'm wiped out. :(
Daily Log:
Hours At Clinic: 8
Shuttle Rides: 5
Appointments: 5
Today was lots of riding back and forth between buildings. We started in Mayo, went to St. Marys, went back to Mayo and then ended at St. Marys. Since I had 5 appointments today, we never even found time for lunch!
Yesterday was mostly focused on lifestyle changes. Today was mostly focused on medication. We met with one of my main doctors today and were SO happy with the appointment! When we saw him in November, he hadn't left a very good impression. I've been dreading this meeting with him. But it was really helpful. He was so kind and he showed that he had spent a lot of time thinking about my specific case. That was a blessing.
I might post more later, but as for now, I'm wiped out. :(
Daily Log:
Hours At Clinic: 8
Shuttle Rides: 5
Appointments: 5
Tuesday, May 10, 2011
Mayo Clinic Trip - The Little Things No One Tells You
1. Your schedule can change daily (or hourly)
One doctor decides on Monday that you need to see two other doctors, so they just add those in on Tuesday and Wednesday. The first day of this trip we had at least 4 different versions of our schedule (each time they change something, the nurse will print out an updated schedule).
2. Shuttles can be awesome and also really annoying!
There are shuttles EVERYWHERE! Shuttles from hotels to hospitals. Shuttles from hospitals to other hospitals. Shuttles from hospitals to Walmart. ye-ah. No kidding. Shuttles are GREAT because they save you from parking and driving and walking. They literally pick you up at the door of one building and drop you off at the door of the next building. However, you need to remember to have a tip for the driver. And you also need to be prepared to wait. Some of the shuttles only come once an hour, so if you miss it, you'll be waiting for a while.
3. You sit around and wait and wait and wait. And then get up and ruuuuuuun to your next appointment.
Bring a book. Or make up stories in your head about other patients. Or read the bazillion magazines sitting around. But whatever you do, savor those moments because before you know it you'll be off jumping on a shuttle or riding an elevator or something.
4. The elevators are SUPER fast.
It's true. They give me headaches. I have to mentally prepare for it.
5. It's fascinating.
If you just have time to kill, there are lovely displays of artwork all over the Clinic and the hospital. And it's practically a museum as they have displays about the founders of Mayo and St. Marys and more.
One doctor decides on Monday that you need to see two other doctors, so they just add those in on Tuesday and Wednesday. The first day of this trip we had at least 4 different versions of our schedule (each time they change something, the nurse will print out an updated schedule).
2. Shuttles can be awesome and also really annoying!
There are shuttles EVERYWHERE! Shuttles from hotels to hospitals. Shuttles from hospitals to other hospitals. Shuttles from hospitals to Walmart. ye-ah. No kidding. Shuttles are GREAT because they save you from parking and driving and walking. They literally pick you up at the door of one building and drop you off at the door of the next building. However, you need to remember to have a tip for the driver. And you also need to be prepared to wait. Some of the shuttles only come once an hour, so if you miss it, you'll be waiting for a while.
3. You sit around and wait and wait and wait. And then get up and ruuuuuuun to your next appointment.
Bring a book. Or make up stories in your head about other patients. Or read the bazillion magazines sitting around. But whatever you do, savor those moments because before you know it you'll be off jumping on a shuttle or riding an elevator or something.
4. The elevators are SUPER fast.
It's true. They give me headaches. I have to mentally prepare for it.
5. It's fascinating.
If you just have time to kill, there are lovely displays of artwork all over the Clinic and the hospital. And it's practically a museum as they have displays about the founders of Mayo and St. Marys and more.
Mayo Clinic Trip - Day Three
It was day two of appointments! Today was long - it was one appointment that lasted about 8 hours. Thankfully they gave us lots of breaks, which was helpful. It was an educational appointment and we got lots of helpful information and a great packet of information to take with us. We shared the appointment with three other patients and their guests. It was a bit discouraging at times to hear people talk about having this for 20+ years.... I tried to not think about that. But we're glad that I'm getting this awesome information after only a couple years of pain, rather than after a couple decades. (Side note: they were all shocked to find out that I graduated college...they thought I was still in high school!!!).
We had an INCREDIBLE lunch in the St. Mary's cafeteria. Whoever said that hospital food is gross clearly hasn't eaten here!! We had Chevre Stuffed Portabella (a portabella mushroom stuffed with a yummy goat cheese/rice mixture and topped with a delicious pesto sauce). On the side we had steamed spinach (my favorite) and a freshly baked roll. :)
We finished about 4:30pm and spent a little time exploring Rochester and doing a little shopping. It is nice to see something other than a hospital (even though these are the loveliest hospitals I've ever seen). I'm ready to head to bed because I am TIRED. Tomorrow is another long day where we will be jumping shuttles to race back and forth between buildings all day long. Thank you for the encouragement you send...it means so much and I appreciate it.
Daily Log:
Hours At Clinic: 9.5 hours
Shuttle Rides: 2
Appointments: 1
We had an INCREDIBLE lunch in the St. Mary's cafeteria. Whoever said that hospital food is gross clearly hasn't eaten here!! We had Chevre Stuffed Portabella (a portabella mushroom stuffed with a yummy goat cheese/rice mixture and topped with a delicious pesto sauce). On the side we had steamed spinach (my favorite) and a freshly baked roll. :)
We finished about 4:30pm and spent a little time exploring Rochester and doing a little shopping. It is nice to see something other than a hospital (even though these are the loveliest hospitals I've ever seen). I'm ready to head to bed because I am TIRED. Tomorrow is another long day where we will be jumping shuttles to race back and forth between buildings all day long. Thank you for the encouragement you send...it means so much and I appreciate it.
Daily Log:
Hours At Clinic: 9.5 hours
Shuttle Rides: 2
Appointments: 1
Monday, May 9, 2011
Mayo Clinic Trip - Day 2
It was a long day.
Tomorrow will be even longer.
: /
Let's start with the not-so-fun parts about Mayo. Today was exhausting. Although we only had two appointments, we were racing back and forth all day. Here's a quick schedule to give you an idea of what we went through. (skip this next part if you're in a hurry).
**take shuttle to mayo. talk to lady at information desk. ride up elevator to floor 5. walk into the next building. talk to dermatology lady. wait. take elevator down about 6 floors. walk two buildings over. stand in line. wait. give five viles of blood. walk back through the two buildings. take shuttle to st. mary's. get brunch. walk two buildings over. wait. talk to receptionist. fill out forms. wait. talk to nurse for a loooooooong time. wait. talk to nurse practitioner. wait. talk to receptionist. wait. ride up an elevator. find out the shuttle isn't coming there today. go down elevator. walk back through two buildings. take shuttle back to mayo. ride up 5 floors. talk to receptionist. wait. talk to receptionist again. wait again. ride down 5 floors. wait and wait and wait. board shuttle to go to hotel.**
When you're already hurting and weary, this schedule doesn't really help. It is also emotionally draining to spend over an hour and half discussing symptoms and talking about how this has completely changed my life. The medical professors want to know every detail so they make you relive moments that you wish you could forget. An hour and a half of straight questions (even if they are asked kindly) makes you feel a bit like you are being interrogated.
now onto the good parts about today. We met some kind people. The lady in dermatology worked and worked to get me an appointment this week. There is only one doctor in all of Mayo who works with my condition (that proves how rare it is, I guess!!) and he didn't have any openings. We prayed and prayer and this lady rearranged things. We have to stay an extra day, but Mom is hoping that it will be worth it.
The nurse who did my intake interview and exam was SO gentle with my joints and with her on-slaughter of questions, which I really appreciate.
We saw a young mom who had her hands full trying to board a shuttle to St. Mary's with a baby, a stroller, a medical file and a big backpack. So we offered to help. She seemed relieved when she accepted. Incredibly, when we were on our way back to Mayo (hours later) she was on our same shuttle! We really enjoyed her sweet spirit and getting to help her.
And finally, I had the kindest nurse do my blood draw this morning. My goal is always to acknowledge my medical staff as human beings so I try to brighten their days, look them in the eyes when we speak and express gratitude for their work. In the short time it takes to draw five viles of blood, we talked about all sorts of things.
My goal today was to see beauty in the midst of pain. We slowed to enjoy the beautiful artwork lining the walls. We read about the history of Mayo and St. Marys. I updated my gratitude journal.
Daily Log:
Hours at Clinic: 8.5 hours
Shuttle Rides: 4
Appointments: 2
Tomorrow will be even longer.
: /
Let's start with the not-so-fun parts about Mayo. Today was exhausting. Although we only had two appointments, we were racing back and forth all day. Here's a quick schedule to give you an idea of what we went through. (skip this next part if you're in a hurry).
**take shuttle to mayo. talk to lady at information desk. ride up elevator to floor 5. walk into the next building. talk to dermatology lady. wait. take elevator down about 6 floors. walk two buildings over. stand in line. wait. give five viles of blood. walk back through the two buildings. take shuttle to st. mary's. get brunch. walk two buildings over. wait. talk to receptionist. fill out forms. wait. talk to nurse for a loooooooong time. wait. talk to nurse practitioner. wait. talk to receptionist. wait. ride up an elevator. find out the shuttle isn't coming there today. go down elevator. walk back through two buildings. take shuttle back to mayo. ride up 5 floors. talk to receptionist. wait. talk to receptionist again. wait again. ride down 5 floors. wait and wait and wait. board shuttle to go to hotel.**
When you're already hurting and weary, this schedule doesn't really help. It is also emotionally draining to spend over an hour and half discussing symptoms and talking about how this has completely changed my life. The medical professors want to know every detail so they make you relive moments that you wish you could forget. An hour and a half of straight questions (even if they are asked kindly) makes you feel a bit like you are being interrogated.
now onto the good parts about today. We met some kind people. The lady in dermatology worked and worked to get me an appointment this week. There is only one doctor in all of Mayo who works with my condition (that proves how rare it is, I guess!!) and he didn't have any openings. We prayed and prayer and this lady rearranged things. We have to stay an extra day, but Mom is hoping that it will be worth it.
The nurse who did my intake interview and exam was SO gentle with my joints and with her on-slaughter of questions, which I really appreciate.
We saw a young mom who had her hands full trying to board a shuttle to St. Mary's with a baby, a stroller, a medical file and a big backpack. So we offered to help. She seemed relieved when she accepted. Incredibly, when we were on our way back to Mayo (hours later) she was on our same shuttle! We really enjoyed her sweet spirit and getting to help her.
And finally, I had the kindest nurse do my blood draw this morning. My goal is always to acknowledge my medical staff as human beings so I try to brighten their days, look them in the eyes when we speak and express gratitude for their work. In the short time it takes to draw five viles of blood, we talked about all sorts of things.
My goal today was to see beauty in the midst of pain. We slowed to enjoy the beautiful artwork lining the walls. We read about the history of Mayo and St. Marys. I updated my gratitude journal.
955. Funny accents
956. sweet baby girl waving chubby fingers
957. tulips standing tall in the wind
958. blueberry waffle cone ice cream
959. discussing wedding colors
960. one who goes above and beyond their job description
961. Get Well Soon balloon brightening up a hospital
962. hearing rain falling on the roof
963. wall filled with detailed, coloring drawings of butterflies
Daily Log:
Hours at Clinic: 8.5 hours
Shuttle Rides: 4
Appointments: 2
Mayo Clinic Trip - "Hans the Cheese Curd-er"
Guest post tonight from my wonderful mother because I'm too tired right now. :) She'll fill you in on Hans and our adventures yesterday. Enjoy! :)
Yesterday was a very long day of driving for us, but the highlight of the day was no doubt our visit with a sweet kid we named "Hans". We had already stopped a couple of times during the drive and it seemed that everyone we met was disgruntled or indifferent. We tried our usual friendly banter with them,but our smiles were met with blank stares and cold shoulders. Hmm...a strange way for people to act, especially on Mother's Day when one of us was obviously a mother!
After about 8 hours of driving - enjoying the enchanting farms, incredible windmills and rolling hills - we decided to stop for a walking break. While we hustled (ok, I know, hustling with Callie is a bit different from my normal hustle) around an outlet mall, we noticed once again how indifferent people seemed. Their "Sarah Palin-like accents" were hysterical to us, but they seemed to lack her pleasant personality.
We both had a taste for something sweet and McDonald's 69 cent ice cream was not going to do on this Mother's Day. Surely, we figured, with so many dairy cows and cheese stands lining the road that somebody must have some ice cream. Stopping at the first store, we tumbled out of our little car and were greeted by a giant (truly, at least 8 feet tall!) mouse. Inside we discovered literally hundreds of yummy cheeses and the famous cheese curds. Callie and I tried to figure out where these cheese curds are made - why do they only sell them in Wisconsin? She finally gathered her courage and asked the boy behind the counter, who proceed to patiently explain the process.
It was then that I spotted the ice cream! Not only was there ice cream, but inside that old freezer case was one of our very favorite flavors. A trip down memory lane presented itself as I remembered picking blueberries with our children and then eating the delightful blueberry/waffle cone ice cream, which was the orchard's speciality! This seemed like the best Mother's Day, after all!
Callie ordered a waffle cone to split and it was then that we noticed the "Cheese curd specialist". He took her order with a smile and then fished around in his pocket for the change we were missing! This boy's behavior was starkly in contrast with every other person we had met so far on this trip. At the mention of "Blueberry Waffle Cone" ice cream, he quipped, "That's my very favorite kind of ice cream!"
He proceeded to scrub his hands - honestly, he could have been preparing to perform surgery! At one point I began to count the seconds go by, wondering just how long he would keep this up! At long last, he picked up a clean scoop and began stuffing generous scoops of ice cream in the crispy waffle cone. We'd only ordered two scoops but it seemed he managed to cram at least four in there, all the while chattering happily with us.
His sweet service to us - answering silly questions about cheese curds and happily scooping delicious ice cream - made such a difference in our day. We knew he needed name and "Hans" seemed to fit. The next 30 minutes we immortalized Hans and made up all sorts of interesting stories about how he, Mr. Congeniality, ended up in this unfriendly place.
At any rate, on this Mother's Day I was reminded that even the most humble work, done with a happy heart, can be a blessing.
Yesterday was a very long day of driving for us, but the highlight of the day was no doubt our visit with a sweet kid we named "Hans". We had already stopped a couple of times during the drive and it seemed that everyone we met was disgruntled or indifferent. We tried our usual friendly banter with them,but our smiles were met with blank stares and cold shoulders. Hmm...a strange way for people to act, especially on Mother's Day when one of us was obviously a mother!
After about 8 hours of driving - enjoying the enchanting farms, incredible windmills and rolling hills - we decided to stop for a walking break. While we hustled (ok, I know, hustling with Callie is a bit different from my normal hustle) around an outlet mall, we noticed once again how indifferent people seemed. Their "Sarah Palin-like accents" were hysterical to us, but they seemed to lack her pleasant personality.
We both had a taste for something sweet and McDonald's 69 cent ice cream was not going to do on this Mother's Day. Surely, we figured, with so many dairy cows and cheese stands lining the road that somebody must have some ice cream. Stopping at the first store, we tumbled out of our little car and were greeted by a giant (truly, at least 8 feet tall!) mouse. Inside we discovered literally hundreds of yummy cheeses and the famous cheese curds. Callie and I tried to figure out where these cheese curds are made - why do they only sell them in Wisconsin? She finally gathered her courage and asked the boy behind the counter, who proceed to patiently explain the process.
It was then that I spotted the ice cream! Not only was there ice cream, but inside that old freezer case was one of our very favorite flavors. A trip down memory lane presented itself as I remembered picking blueberries with our children and then eating the delightful blueberry/waffle cone ice cream, which was the orchard's speciality! This seemed like the best Mother's Day, after all!
Callie ordered a waffle cone to split and it was then that we noticed the "Cheese curd specialist". He took her order with a smile and then fished around in his pocket for the change we were missing! This boy's behavior was starkly in contrast with every other person we had met so far on this trip. At the mention of "Blueberry Waffle Cone" ice cream, he quipped, "That's my very favorite kind of ice cream!"
He proceeded to scrub his hands - honestly, he could have been preparing to perform surgery! At one point I began to count the seconds go by, wondering just how long he would keep this up! At long last, he picked up a clean scoop and began stuffing generous scoops of ice cream in the crispy waffle cone. We'd only ordered two scoops but it seemed he managed to cram at least four in there, all the while chattering happily with us.
His sweet service to us - answering silly questions about cheese curds and happily scooping delicious ice cream - made such a difference in our day. We knew he needed name and "Hans" seemed to fit. The next 30 minutes we immortalized Hans and made up all sorts of interesting stories about how he, Mr. Congeniality, ended up in this unfriendly place.
At any rate, on this Mother's Day I was reminded that even the most humble work, done with a happy heart, can be a blessing.
Sunday, May 8, 2011
Mayo Clinic Trip - Day One
Please read the Introduction post here
Yesterday I graduated from college (unofficially). Less than 24 hours later, I was in the car headed to Minnesota with my mom. We decided to make an adventure out of it and enjoy our time together (especially since it may be one of the last times we travel together before I get married). We have a really good time traveling together, which makes this trip much nicer (especially since I've cried a lot in the past two days).
We left home at 5:40am EST and arrived in Rochester around 4pm CST. Since we made this trip in November, we recognized stops along the way. In Wisconsin, we stopped at Tanger Outlets where I bought a very needed pair of jeans. And they were on sale!! :) We also spent time talking about colors and clothing for the wedding.
I'm tired of typing now. Check back later for the story of Hans the Cheese Curd-er. oh yeah. It's epic.
Yesterday I graduated from college (unofficially). Less than 24 hours later, I was in the car headed to Minnesota with my mom. We decided to make an adventure out of it and enjoy our time together (especially since it may be one of the last times we travel together before I get married). We have a really good time traveling together, which makes this trip much nicer (especially since I've cried a lot in the past two days).
We left home at 5:40am EST and arrived in Rochester around 4pm CST. Since we made this trip in November, we recognized stops along the way. In Wisconsin, we stopped at Tanger Outlets where I bought a very needed pair of jeans. And they were on sale!! :) We also spent time talking about colors and clothing for the wedding.
I'm tired of typing now. Check back later for the story of Hans the Cheese Curd-er. oh yeah. It's epic.
Mayo Clinic - Introduction Post
Since many people asked for updates on my health and about this trip to Mayo, I decided to simply include it as part of my blog. This way people can read as they wish and I don't have to worry about sending out emails to multiple addresses.
Heath is personal. These posts may seem a bit vague (I probably will not go into much detail describing diagnoses). This is simply because the internet is so public that I wish to keep some privacy. However, I understand that some people may like more information than what is posted on my blog. Please feel free to leave a comment here on the blog. I will probably respond in my next post or (if it is a more personal question) I will respond in a private email to you.
Heath is personal. These posts may seem a bit vague (I probably will not go into much detail describing diagnoses). This is simply because the internet is so public that I wish to keep some privacy. However, I understand that some people may like more information than what is posted on my blog. Please feel free to leave a comment here on the blog. I will probably respond in my next post or (if it is a more personal question) I will respond in a private email to you.
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