QOTD: Why Mayo?
No, I'm not talking about the icky white condiment that The Hubby mixes with ketchup to put on his french fries. I have made comments on social media about trip down to Rochester Mayo Clinic over the past few weeks, so in an effort to not seem so cryptic, but to also save the insane amount of wording for one Facebook or Instagram post, I figured I'd give a little rundown here.
So, bear with me, I will try to make this short and sweet.
Let's start with the basics... I've struggled with some kind of pain pretty much my whole life. When I was a kid I had constant knee pain. Docs told my mom it was just because I played hard. By 19 years old I had my first surgery to fix an injury. Between 19 and 35 years old I have had both shoulders fixed, my knee realigned, carpal tunnel surgery, and a second knee surgery to remove the pins that were holding it together from the first surgery. I've also pretty consistently played some kind of sport, or been as active as possible. I hate sitting still and I love sports!
In 2012 I noticed a new side pain that I couldn't shake. It was much like a side stitch, I've mentioned here off and on in posts since it became such a nuisance. After a couple of years of dealing with that pain and not being able to find a reason for it (my poor doctors), I developed a new annoying pain in my collarbone. Due to some shoulder issues as well, we thought shoulder surgery in 2014 would be a cure all to both issues. No such luck, but my shoulder to a bit better.
It's now been four years of progressively worse and spreading pain. I've been diagnosed with Raynaud's Syndrome, where my hands or feet lose circulation and turn white. They are most affected by cold, but sometimes stress triggers it. Other times it's totally random. Starting at the bottom and working my way to the top... my feet, hips, knees, hips, low back, fingers, hands, elbows, and shoulders all have some kind of inflammation in them. Most of my joints have evidence of arthritis. Still, no one can say WHY and no one can explain the side pain or collarbone pain that still exist.
I have been seen by my a few different general docs, a couple Ortho docs, Pulmonology, Gastro, Neurology, Physical therapy (several of those), Chiropractic, Rheumatology, Pain Management Specialists, and many many Google searches along the way. (I'm sure I missed one or two docs too.) I've had x-rays, lab work, CT scans, MRIs, ultrasounds, a couple of injections in my spine and ribs (yeah that was super fun), as well as my sternum (ok, that one flat out sucked), and tons of other poking and prodding over the past six years. Every doctor has given me the same answer, "I'm sorry, we're at the bottom of our barrel. I don't have any answers for you and we've done all we can on our end. Let me refer you to..."
It was the last doc, the one with Pain Management who finally made the decision to send me to the Mayo Clinic. She offered to send me in April 2017. I told her I'd have to think about it. This was a HUGE step. People go there when they are really sick. I'm not really sick. I can run and do martial arts, and I'm active. I don't need to waste people's time. I can live with this.
Over the last year I've learned that I can't live with this. I mean, I CAN! I will! But I owe it to myself... and my family to find out what's going on. The pain has progressed over the past year. I can no longer do martial arts. Push ups are almost impossible without intense pain. Holding pads for someone else to kick or hit me had me nearly in tears by the end of a class. I was being stubborn and it wasn't really helping my situation.
On top of that, my Abbycakes has complained at least once a week of leg pain since she was about 3 years old. Docs have consistently assured me that it's likely growing pains. Thing is... I know her pain. I get it. I was that kid who laid in bed crying that my knee hurt. What if??? What if getting answers for me ends up being answers for my girls?? This isn't just about me. If this is something genetic that is creating all off this daily pain, I owe it to my girls to get some answers. I owe it to them to not give up so that they don't have to travel this terrible path.
So, I called message that doctor almost a year later and said, "You know what, I accept your offer. Will you still send me to Mayo?" I had to have an appointment with her first. She didn't hesitate to send the referral, especially after seeing the increase in my symptoms since our previous visit. She told me, "I need to let you know that Mayo does not accept every case. I don't know if they will take your's, but you need to know that there is a chance." Three days later Mayo called me and said they wanted to take my case, but they also wanted another department down there to take it too. Before I knew it, I had a handful of appointments and a go date.
My first appointment was last Friday. First... that place is INSANE!!! It was like walking into Tomorrowland at Disney World! A total step back in time, but at the same time very modern. It's hard to explain, but I loved just looking around. It's also like a well-oiled machine. They have a system and that system is amazing. In one day I had met with a doc for 2 1/2 hours and by the time I got out of my meeting with her, they were sending me to x-ray and lab. After lunch I had a whole new itinerary, complete with 7 days worth of upcoming appointments!!! CRAZY!!
Well, there you have it! My "How I Ended Up Going to Mayo" story. Not too exciting and I probably missed some key info. I've told the story so many times that I'm almost sick of hearing myself say it! Yet, like most things in my life, I want to share my story. If there's even a slight chance that my story or my struggles can help just ONE PERSON, then I'll share. I would consider all of the pain and misery completely worth it if it helped someone else in the end.
I think the hardest part isn't so much the pain. While that's frustrating as hell, I can manage. It's honestly become a part of daily life. No, the hardest part is slowly watching all of the things I love to do become things I have to give up. I fear running will be my next one. It started with softball and volleyball years ago. I got the point where I couldn't throw the ball anymore and repetitive overhead play didn't work with my shoulders. Then it was hockey - the side pain put a solid end to that since I could hardly last a shift. Most recently has been having to step back from karate and muay thai. That's been a hard decision. I don't just miss the sports, I miss the people. I miss the friends and the interactions on the mats. I fear running is next, but I will get through this half marathon on Saturday first!
The crazy part is, when I feel good... OMG do I feel good! And I want to do EVERYTHING!!! The last really good stretch I had was in November and I was able to work out almost every day. Then the pain slowly leaked back in. It just kept getting worse and worse until I had to stop lifting weights, going to karate and muay thai... shoot, I was playing that basketball arcade game with my girls last week and I had to stop half way through. It hurt too much. I'm 38!!!! This is NOT normal!!
Plus, I didn't realize what a huge player it is on my emotional and mental well being. Until I have a decent day, I don't even notice how much of a funk I've sunk into. So, I'm glad I made the choice to move forward. I may not get answers to all of my questions, but I will know I did everything I could and that I'm working with the best of the best. They will also give me tools to help cope with the bad days, which I now know I need. They are also helping me realize that I need to take care of me.
It sucks that vacuuming or cleaning the cats' litter boxes hurts like hell. I'm beyond thankful that my amazing husband understands that and doesn't doubt what he can't see. It's been very hard for me to admit the things I cannot do. I feel weak. I feel like a failure, and the guilt is oh so strong.
My head is a mess, but my body is even messier. This was the right step. So, for now, I'll hold on to hope that someone will be able to give me some answers along this journey.
So, bear with me, I will try to make this short and sweet.
Let's start with the basics... I've struggled with some kind of pain pretty much my whole life. When I was a kid I had constant knee pain. Docs told my mom it was just because I played hard. By 19 years old I had my first surgery to fix an injury. Between 19 and 35 years old I have had both shoulders fixed, my knee realigned, carpal tunnel surgery, and a second knee surgery to remove the pins that were holding it together from the first surgery. I've also pretty consistently played some kind of sport, or been as active as possible. I hate sitting still and I love sports!
In 2012 I noticed a new side pain that I couldn't shake. It was much like a side stitch, I've mentioned here off and on in posts since it became such a nuisance. After a couple of years of dealing with that pain and not being able to find a reason for it (my poor doctors), I developed a new annoying pain in my collarbone. Due to some shoulder issues as well, we thought shoulder surgery in 2014 would be a cure all to both issues. No such luck, but my shoulder to a bit better.
It's now been four years of progressively worse and spreading pain. I've been diagnosed with Raynaud's Syndrome, where my hands or feet lose circulation and turn white. They are most affected by cold, but sometimes stress triggers it. Other times it's totally random. Starting at the bottom and working my way to the top... my feet, hips, knees, hips, low back, fingers, hands, elbows, and shoulders all have some kind of inflammation in them. Most of my joints have evidence of arthritis. Still, no one can say WHY and no one can explain the side pain or collarbone pain that still exist.
I have been seen by my a few different general docs, a couple Ortho docs, Pulmonology, Gastro, Neurology, Physical therapy (several of those), Chiropractic, Rheumatology, Pain Management Specialists, and many many Google searches along the way. (I'm sure I missed one or two docs too.) I've had x-rays, lab work, CT scans, MRIs, ultrasounds, a couple of injections in my spine and ribs (yeah that was super fun), as well as my sternum (ok, that one flat out sucked), and tons of other poking and prodding over the past six years. Every doctor has given me the same answer, "I'm sorry, we're at the bottom of our barrel. I don't have any answers for you and we've done all we can on our end. Let me refer you to..."
It was the last doc, the one with Pain Management who finally made the decision to send me to the Mayo Clinic. She offered to send me in April 2017. I told her I'd have to think about it. This was a HUGE step. People go there when they are really sick. I'm not really sick. I can run and do martial arts, and I'm active. I don't need to waste people's time. I can live with this.
Over the last year I've learned that I can't live with this. I mean, I CAN! I will! But I owe it to myself... and my family to find out what's going on. The pain has progressed over the past year. I can no longer do martial arts. Push ups are almost impossible without intense pain. Holding pads for someone else to kick or hit me had me nearly in tears by the end of a class. I was being stubborn and it wasn't really helping my situation.
On top of that, my Abbycakes has complained at least once a week of leg pain since she was about 3 years old. Docs have consistently assured me that it's likely growing pains. Thing is... I know her pain. I get it. I was that kid who laid in bed crying that my knee hurt. What if??? What if getting answers for me ends up being answers for my girls?? This isn't just about me. If this is something genetic that is creating all off this daily pain, I owe it to my girls to get some answers. I owe it to them to not give up so that they don't have to travel this terrible path.
So, I called message that doctor almost a year later and said, "You know what, I accept your offer. Will you still send me to Mayo?" I had to have an appointment with her first. She didn't hesitate to send the referral, especially after seeing the increase in my symptoms since our previous visit. She told me, "I need to let you know that Mayo does not accept every case. I don't know if they will take your's, but you need to know that there is a chance." Three days later Mayo called me and said they wanted to take my case, but they also wanted another department down there to take it too. Before I knew it, I had a handful of appointments and a go date.
My first appointment was last Friday. First... that place is INSANE!!! It was like walking into Tomorrowland at Disney World! A total step back in time, but at the same time very modern. It's hard to explain, but I loved just looking around. It's also like a well-oiled machine. They have a system and that system is amazing. In one day I had met with a doc for 2 1/2 hours and by the time I got out of my meeting with her, they were sending me to x-ray and lab. After lunch I had a whole new itinerary, complete with 7 days worth of upcoming appointments!!! CRAZY!!
Well, there you have it! My "How I Ended Up Going to Mayo" story. Not too exciting and I probably missed some key info. I've told the story so many times that I'm almost sick of hearing myself say it! Yet, like most things in my life, I want to share my story. If there's even a slight chance that my story or my struggles can help just ONE PERSON, then I'll share. I would consider all of the pain and misery completely worth it if it helped someone else in the end.
I think the hardest part isn't so much the pain. While that's frustrating as hell, I can manage. It's honestly become a part of daily life. No, the hardest part is slowly watching all of the things I love to do become things I have to give up. I fear running will be my next one. It started with softball and volleyball years ago. I got the point where I couldn't throw the ball anymore and repetitive overhead play didn't work with my shoulders. Then it was hockey - the side pain put a solid end to that since I could hardly last a shift. Most recently has been having to step back from karate and muay thai. That's been a hard decision. I don't just miss the sports, I miss the people. I miss the friends and the interactions on the mats. I fear running is next, but I will get through this half marathon on Saturday first!
The crazy part is, when I feel good... OMG do I feel good! And I want to do EVERYTHING!!! The last really good stretch I had was in November and I was able to work out almost every day. Then the pain slowly leaked back in. It just kept getting worse and worse until I had to stop lifting weights, going to karate and muay thai... shoot, I was playing that basketball arcade game with my girls last week and I had to stop half way through. It hurt too much. I'm 38!!!! This is NOT normal!!
Plus, I didn't realize what a huge player it is on my emotional and mental well being. Until I have a decent day, I don't even notice how much of a funk I've sunk into. So, I'm glad I made the choice to move forward. I may not get answers to all of my questions, but I will know I did everything I could and that I'm working with the best of the best. They will also give me tools to help cope with the bad days, which I now know I need. They are also helping me realize that I need to take care of me.
It sucks that vacuuming or cleaning the cats' litter boxes hurts like hell. I'm beyond thankful that my amazing husband understands that and doesn't doubt what he can't see. It's been very hard for me to admit the things I cannot do. I feel weak. I feel like a failure, and the guilt is oh so strong.
My head is a mess, but my body is even messier. This was the right step. So, for now, I'll hold on to hope that someone will be able to give me some answers along this journey.
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