Getting your first appointment

Posted by amkaloha @amkaloha, Dec 29, 2016

I have so many questions about this. Do I have to have a PCP referral to make an appointment? How about health records? I have many problems, the most prevalent right now is swollen legs and feet and have been seeing a few doctors in my area but no one seems to be able to help. I have had sonogram tests (blood movement is fine with no clots), an echocardiogram (heart is working well), but my legs stay swollen and stiff. I also have terrible pain in my knees due to osteoarthritis and neuropathy in both legs (I have to use a walker). Must I diagnose myself? – how do i know which department at Mayo to start with? This is in addition to if they will take my Medicare and BCBS. Mayo has such a great reputation that I just feel they could help me get my life back. Thanks to anyone with any answers or ideas.

Dinner sounds great. My husband is supposed to arrive by 7 but one never knows….plane from Philadelphia could be delayed. Let’s plan on turkey sandwiches….yum!

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It was great to meet @bernese53! Good to have a fellow fan of Mayo to swap stories with! And oh boy, did we swap stories!

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It was wonderful to meet you, chicagomichelle. Many of our swapped stories are about physicians who fail to look at us as human beings with complex medical conditions. These physicians prescribe meds for one condition never thinking about other conditions…..sometimes the other stuff gets much worse. Mayo physicians take the time to listen and treat you as a person, not just a collection of medical conditions. The Mayo doctors are wonderful.

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AND…the big question is…did you both get the hot turkey sandwich? @bernese53 and @chicagomichelle Glad your meetup went well and that you’re continuing to connect on Connect 🙂

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@colleenyoung

AND…the big question is…did you both get the hot turkey sandwich? @bernese53 and @chicagomichelle Glad your meetup went well and that you’re continuing to connect on Connect 🙂

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One of us did, but one of us couldn’t wait and had it the day before 😉

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@colleenyoung

AND…the big question is…did you both get the hot turkey sandwich? @bernese53 and @chicagomichelle Glad your meetup went well and that you’re continuing to connect on Connect 🙂

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It is amazing that certain places and food quickly become ‘must haves’ when returning to Rochester! It sounds like you had fun. By the way, I hope that you both, @chicagomichelle and @bernese53 got some good reports. Please keep in touch with us. Rosemary

Liked by chicagomichelle

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Ha yes! I’ve been trying to get ahold of some Bunny cake since I got here, to no avail! I’ve heard 3 people talk about it so far. I guess I’m not meant to have it. I have lost 20# since my last visit so that’s good. I had appts all day Monday and only one scheduled every other day so lots of downtime at the Kahler reading and sleeping, but I’m not complaining.

I made sure to get a remodeled room this time and it’s MUCH nicer. I will always request it when booking here now, though will only stay here when flying, as I need to be across the street. Not a big fan of hotel shuttles as I like to come and go as I please. When I drive, the comfort suites is fantastic and half the cost and I just valet park.

I got great news on my teeth, which I feared losing. I see a reconstructive dentist next month and get to take Dr Sood’s coarse, which I’m very excited about! Also got knees drained and steroid shots so I can actually walk now. I hope it lasts. A few other specialists were scheduled too, plus, they even ordered a mammogram as I’m due for one. I love this place and could not be more grateful for the fantastic care I am getting here. If only there were more healthcare facilities who adopted the Mayo philosophy, this world would be a much healthier place.

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YAY on the great news about being able to see a reconstructive dentist and I am so glad that you can walk without too much difficulty. It was so good to meet you last Saturday. Please stay in touch.

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@chicagomichelle

Ha yes! I’ve been trying to get ahold of some Bunny cake since I got here, to no avail! I’ve heard 3 people talk about it so far. I guess I’m not meant to have it. I have lost 20# since my last visit so that’s good. I had appts all day Monday and only one scheduled every other day so lots of downtime at the Kahler reading and sleeping, but I’m not complaining.

I made sure to get a remodeled room this time and it’s MUCH nicer. I will always request it when booking here now, though will only stay here when flying, as I need to be across the street. Not a big fan of hotel shuttles as I like to come and go as I please. When I drive, the comfort suites is fantastic and half the cost and I just valet park.

I got great news on my teeth, which I feared losing. I see a reconstructive dentist next month and get to take Dr Sood’s coarse, which I’m very excited about! Also got knees drained and steroid shots so I can actually walk now. I hope it lasts. A few other specialists were scheduled too, plus, they even ordered a mammogram as I’m due for one. I love this place and could not be more grateful for the fantastic care I am getting here. If only there were more healthcare facilities who adopted the Mayo philosophy, this world would be a much healthier place.

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@chicagomichelle, I’ve not had any of that cake either. Either too full after the meal, or fasting in preparation for next day.
Wow! I hope your weight loss was intentional. My sense reading your posts is that it was intentional, congratulations. That is an awesome accomplishment.
I stay at the Gift of Life Transplant House and my husband and I use the door-to-door shuttle. On a nice day, we will walk to and from the house (April).
I am happy for you that you are making progress and receiving the treatments that you need. Enjoy your downtime! We know that Mayo can and will put you through a marathon of appointments and procedures if you need them.
Stay warm. And enjoy a good night sleep. How early do you start tomorrow?
Rosemary

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@chicagomichelle

Ha yes! I’ve been trying to get ahold of some Bunny cake since I got here, to no avail! I’ve heard 3 people talk about it so far. I guess I’m not meant to have it. I have lost 20# since my last visit so that’s good. I had appts all day Monday and only one scheduled every other day so lots of downtime at the Kahler reading and sleeping, but I’m not complaining.

I made sure to get a remodeled room this time and it’s MUCH nicer. I will always request it when booking here now, though will only stay here when flying, as I need to be across the street. Not a big fan of hotel shuttles as I like to come and go as I please. When I drive, the comfort suites is fantastic and half the cost and I just valet park.

I got great news on my teeth, which I feared losing. I see a reconstructive dentist next month and get to take Dr Sood’s coarse, which I’m very excited about! Also got knees drained and steroid shots so I can actually walk now. I hope it lasts. A few other specialists were scheduled too, plus, they even ordered a mammogram as I’m due for one. I love this place and could not be more grateful for the fantastic care I am getting here. If only there were more healthcare facilities who adopted the Mayo philosophy, this world would be a much healthier place.

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No, not really intentional. I was on arava for a month and pretty much lost my appetite. I was literally force feeding myself noodles. The drug was a nightmare and made me much worse. My appetite is still very poor after a month off, but I’m not complaining, I needed to lose as the extra weight was not good for my knees anyway.

I drink a cvs protein shake every morning and eat a banana so at least I’m getting some nutrition. My body has been seriously resistant to drugs and I get allll the side effects, and then get side effects from the drugs they put me on for the side effects. I see the pharmacological dept next month, so hoping they can help.

Need to be in at 8 tomorrow as a checker and then a 9:45 appt. And then, back to the Kahler. Hopefully the kids who have been screaming at the top of their lungs in the hallway as they run laps up and down will be checking out in the morning!

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Thanks so much @bernese53 and I definitely will!

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@chicagomichelle

Ha yes! I’ve been trying to get ahold of some Bunny cake since I got here, to no avail! I’ve heard 3 people talk about it so far. I guess I’m not meant to have it. I have lost 20# since my last visit so that’s good. I had appts all day Monday and only one scheduled every other day so lots of downtime at the Kahler reading and sleeping, but I’m not complaining.

I made sure to get a remodeled room this time and it’s MUCH nicer. I will always request it when booking here now, though will only stay here when flying, as I need to be across the street. Not a big fan of hotel shuttles as I like to come and go as I please. When I drive, the comfort suites is fantastic and half the cost and I just valet park.

I got great news on my teeth, which I feared losing. I see a reconstructive dentist next month and get to take Dr Sood’s coarse, which I’m very excited about! Also got knees drained and steroid shots so I can actually walk now. I hope it lasts. A few other specialists were scheduled too, plus, they even ordered a mammogram as I’m due for one. I love this place and could not be more grateful for the fantastic care I am getting here. If only there were more healthcare facilities who adopted the Mayo philosophy, this world would be a much healthier place.

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@chicagomichelle, Please accept my sincere apology for my inappropriate response. I am so sorry that I made a wrong conclusion. It sounds like you really have a sensitivity to drugs. That must be tough. I admire your attitude; it points to the positive. Please keep working on getting the nutrition that your body needs. I think it is a good thing that you will see a specialist to help you. You are moving in the right directions.
You might want to purchase a pair of ear plugs to ensure a good night sleep. Hope all goes well for you tomorrow. Maybe there will be some music in Gonda lobby to enjoy.
Rosemary

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@chicagomichelle

Ha yes! I’ve been trying to get ahold of some Bunny cake since I got here, to no avail! I’ve heard 3 people talk about it so far. I guess I’m not meant to have it. I have lost 20# since my last visit so that’s good. I had appts all day Monday and only one scheduled every other day so lots of downtime at the Kahler reading and sleeping, but I’m not complaining.

I made sure to get a remodeled room this time and it’s MUCH nicer. I will always request it when booking here now, though will only stay here when flying, as I need to be across the street. Not a big fan of hotel shuttles as I like to come and go as I please. When I drive, the comfort suites is fantastic and half the cost and I just valet park.

I got great news on my teeth, which I feared losing. I see a reconstructive dentist next month and get to take Dr Sood’s coarse, which I’m very excited about! Also got knees drained and steroid shots so I can actually walk now. I hope it lasts. A few other specialists were scheduled too, plus, they even ordered a mammogram as I’m due for one. I love this place and could not be more grateful for the fantastic care I am getting here. If only there were more healthcare facilities who adopted the Mayo philosophy, this world would be a much healthier place.

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No worries @rosemarya! You didn’t know. I’m actually gratefully to have lost that weight, no matter how I had to do it. I needed to as I was up to 192 pounds, which was not good for me. At the height of the huge prednisone doses, I was 235. It’s been a nightmare and drugs which I was pretty much prescribed like candy, including antibiotics, biologics, norco, Valium, you name it, have put me here. Not to mention drugs for the side effects of those drugs, essentially putting me in a wheelchair. I’ve developed ptsd after all that I have been through as a result of my 7 year drugging and all that has happened to my body as a result.

It actually scares me that I now have no pain in my legs as it’s like I’m waiting for it to go away and for something else to happen. The last time I came home from Mayo, I stepped on a stair and tore an adductor muscle in my leg and it was the worst pain in my life. I attribute it to levaquin, a drug I had been on 4 or so months prior as a result of another lung infection, due to yet another biologic. I’m trying to take this day by day and not overtax my body in hopes it will come back to me. I will be seeing pharmalogical specialists on my next visit here.

Funny what you said about the ear plugs. I recently bought headset type ones for home as I have 2 neighbors above me who sound like a herd of elephants, 24/7. It’s a nightmare. I’ve been using hypnosis to sleep and I listened to 3 different CDs last night. The hypnotist is Anna Thompson and she is wonderful. You can get her CDs on Amazon. I’ve found it is the one way I can get my mind to stop. Dr Sood’s book is helping me a great deal as well and I feel so lucky to actually be able to take his coarse in person.

I also feel lucky to finally be at Mayo and getting the treatment I need. When doctors would say things like “welcome to old age” at home, I would cringe. I’m 56 years old and should not be in a wheelchair with a crumbling body. My Chicago doctors never drained my knees in 7 years and instead, wanted to give me drugs and send me to shrinks when I cried from severe pain. They didn’t listen. One took full advantage of me, in a very personal way, and I believe I developed something very close to Stockholm syndrome in that I continued to see him, even though his treatments were hurting me gravely. What that man did to me was a sin and it was at Mayo that for the first time, a doctor spoke the words, “I am so sorry, that should have never happened to you.” I needed so badly to hear that from another medical professional. I actually see him again today and look forward to expressing my gratitude to him.

Instead of the words “there’s no place like home” I’ve replaced them with “there’s no place like Mayo” in my head these days. I’ll come back as many times as necessary, even if I have to walk here. I’ll find a way to make it happen as it is truly my only hope now.

I appreciate this forum as well as it helps to get it all out. I’ve started cognitive behavioral therapy at home too, and that is also helping me.

Thanks for listening.

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@chicagomichelle

Ha yes! I’ve been trying to get ahold of some Bunny cake since I got here, to no avail! I’ve heard 3 people talk about it so far. I guess I’m not meant to have it. I have lost 20# since my last visit so that’s good. I had appts all day Monday and only one scheduled every other day so lots of downtime at the Kahler reading and sleeping, but I’m not complaining.

I made sure to get a remodeled room this time and it’s MUCH nicer. I will always request it when booking here now, though will only stay here when flying, as I need to be across the street. Not a big fan of hotel shuttles as I like to come and go as I please. When I drive, the comfort suites is fantastic and half the cost and I just valet park.

I got great news on my teeth, which I feared losing. I see a reconstructive dentist next month and get to take Dr Sood’s coarse, which I’m very excited about! Also got knees drained and steroid shots so I can actually walk now. I hope it lasts. A few other specialists were scheduled too, plus, they even ordered a mammogram as I’m due for one. I love this place and could not be more grateful for the fantastic care I am getting here. If only there were more healthcare facilities who adopted the Mayo philosophy, this world would be a much healthier place.

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@chicagomichelle, I wish for you to have a good day today.
I also want to encourage you to continue looking at some of the discussions where you have made previous posts, and to explore some new ones. You have a wonderful attitude about life and all that you have experienced healthwise. Plus, you have a very enjoyable writing style. I think that you would be able to offer a unique perspective of hope and support to others who are on comparable ‘journeys’.
Hugs,
Rosemary

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@rosemarya Awww, thanks for saying that Rosemary. I’m actually writing a memoir about my medical saga, starting in 2008 when I tore both rotator cuffs on a beach and was then diagnosed with RA and fibromyalgia as a result of the severe pain and inflammation in my body. I went from 0 to everything, all in a day. (I stole that line from my favorite band, the Counting Crows)

That same year, my husband was misdiagnosed with pancreatitis in July and told to go home and not eat fat. His severe pain would not go away and we kept searching for answers. A month later, we would learn he really had esophageal cancer and he passed 3 months later, on November second, the day of the dead. It was just like him to leave us on a day set aside to celebrate death. He is still with me and always will be.

I will take your advice and check out some threads where I may be able to help. I’ve removed myself from most social media in the past month as I found the negatives actually affected my pain, but I am all about helping others. I just filled out a Mayo financial aid application and I had intended to offer any services I could in exchange for what they have done for me. This is a great place to start.

It’s a good thing I checked my schedule this morning as my doctor had scheduled a mammogram for me today. Plus, she managed to get me a pharma consult on Friday, with plenty of time before I have to catch my plane!

As always, I remain grateful and have a great day yourself!

Hugs!

Michelle

PS I actually walked over to my checker appt this morning and when I entered Gonda, there was the live piano player you sent. Thanks for that!

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