I find myself being jealous of the people out there with more widely known diseases than Cushings. I like being rare, don't mistake what I'm saying here. Being a medical freak show is kind of fun. Or it was at the beginning of this saga. Now it's just a pain in the ass. It would just be so much easier if my disease was more popular.
Take breast cancer for example. Purchase, use or wear anything pink and you are a supporter. Very few of us who actually interact with people on a regular basis remain untouched by this disease. If you have breast cancer, not only do you not have to explain the disease to people, but there is a built in support system of friends, relatives and coworkers who have battled, or watched someone they know battle it. There are walks, runs, and stacks of return address labels benefiting breast cancer research. Prominent stars, baseball and football teams accessorized in pink, and corporations work on bringing awareness of the disease.
MS has their 150 mile bike rides. Alzheimer's has walks and purple ribbons. Women's heart disease has "Go Red" campaigns. The Leukemia Lymphoma Society has Team in Training.
I have the bad luck of getting an obscure disease that no one knows exists. And the things Cushings does to the body are so weird and catastrophic that explaining them to other people is crazy talk. There are no Cushings bike rides, walks, pins, Kitchen Aide appliances, baseball caps, bumper stickers, or Hollywood stars stumping for Cushings awareness. I've got one person that I met a couple of visits ago at NIH, who is dealing with her own Cushings that I can lean on for support. And Christy leans on me for the same reason. How can regular people understand when you gain 20 pounds in 10 days for no reason, your blood pressure goes through the roof and your body can't process sugar anymore. All of a sudden you bleed all the time, your skin becomes practically see through, your hair falls out and your face looks like someone stuffed it with cotton balls. It would be so much easier to just wear a tee shirt saying "Cushings Sucks" and have everyone know that I'm not just bald and fat, I have Cushings!
Maybe someday Christy and I will put on a run to raise awareness about Cushings. The participants will have to wear those blow up sumo wrestler costumes that make you look like Asian weebles, and drag 50 lbs of dead weight behind them. Along the route they'll have to eat no salt, low carb food that tastes like cardboard, take their blood pressure 42 times and identify mystery symptoms as they pop up. Much fun will be had by all...especially Christy and I.
I suppose it wouldn't be my style to get a run of the mill disease, but a girl can dream....
Saturday, January 29, 2011
Thursday, January 27, 2011
Someone open a window - Carol's gonna hurl!!
Week 1 of physical therapy is done. Over. Finis. I made it out alive, but only barely.
This morning I had session #3 for the week, and I was thinking I was doing pretty well. I had made it through sessions #1 and #2 on Monday and Tuesday with flying colors working hard and feeling like it, but also feeling good to be working out again, albeit on a different level than I was used to. I also did all my exercises yesterday at home, not wanting to take a day off from working the muscles in my hips and legs that are so disastrously weak right now. So I turned up at the physical therapy studio full of my athlete self and ready to rock the workout. Instead, it rocked me.
I started off doing 10 minutes of cardio on a machine I have never seen before but am now in love with. It's a cross between a recumbent bike, stair stepper and elliptical trainer all in one. I have been wanting to start doing cardio again (not just walking the pups) and this was a perfect way for me to see what my current ability is. Jeanne got me all set up and off I went recumbently stepping my way on level two down my imaginary road to my imaginary beach. And there was a smile on my face.
Five minutes in I couldn't believe I was still going and feeling good. I wasn't sweating, although I was starting to get warm, and my legs didn't feel like overcooked linguine. Life is good. I was still going strong when Jeanne came and got me after 11 minutes. As I stood up, Jeanne asked if I needed to take a breather and have some water. When I stood up is when it hit me. Water goes well with overcooked linguine. I drank my water as I wandered around the room trying to find feeling in my quads and not trip over the miscellaneous exercise equipment.
Now you may think this might be a demoralizing moment for me. But instead I was proud of myself for doing 11 minutes of cardio! Sliding scale of accomplishment at work. I felt like I pushed myself and, as my stomach was deciding whether or not to accept the water I just fed it, I basked in the glow of the road to athleticism. I may be bumping along in the breakdown lane, but I'm on the road none the less.
We then moved on to several new exercises using bands. It's amazing to me how these tools of torture come in such happy colors! How a bright yellow band has the capacity to make a leg actually feel like it's going to fall off. And that water is not sitting well in the old "athlete's" body. I'm looking around for a trash can, but trying to be subtle. I'm cool. I'm fabulous. I'm gonna hurl water. But at least it's covered by insurance...
After finishing the nightmare yellow band exercises, we moved on to the bevy of exercises we did during the past 2 sessions. I needed a crane to move my legs, my stomach muscles were stuck in the "on" position, and I really wanted the room to stop jumping around. When did everyone start looking like they were reflections in a fun house mirror? Yes, I would like another cup of water thank you...
Bottom line, I got out of there without hurling. Victory! I also felt like I worked hard, and that in and of itself is very satisfying. I learned kind of what to expect when I go back to the gym to start doing cardio. And I learned that I shouldn't be mortified when I do return to the gym to do my cardio. I'll be ok if I do 10 minutes or if I do 20 minutes or whatever. As long as I don't throw up my water...
This morning I had session #3 for the week, and I was thinking I was doing pretty well. I had made it through sessions #1 and #2 on Monday and Tuesday with flying colors working hard and feeling like it, but also feeling good to be working out again, albeit on a different level than I was used to. I also did all my exercises yesterday at home, not wanting to take a day off from working the muscles in my hips and legs that are so disastrously weak right now. So I turned up at the physical therapy studio full of my athlete self and ready to rock the workout. Instead, it rocked me.
I started off doing 10 minutes of cardio on a machine I have never seen before but am now in love with. It's a cross between a recumbent bike, stair stepper and elliptical trainer all in one. I have been wanting to start doing cardio again (not just walking the pups) and this was a perfect way for me to see what my current ability is. Jeanne got me all set up and off I went recumbently stepping my way on level two down my imaginary road to my imaginary beach. And there was a smile on my face.
Five minutes in I couldn't believe I was still going and feeling good. I wasn't sweating, although I was starting to get warm, and my legs didn't feel like overcooked linguine. Life is good. I was still going strong when Jeanne came and got me after 11 minutes. As I stood up, Jeanne asked if I needed to take a breather and have some water. When I stood up is when it hit me. Water goes well with overcooked linguine. I drank my water as I wandered around the room trying to find feeling in my quads and not trip over the miscellaneous exercise equipment.
Now you may think this might be a demoralizing moment for me. But instead I was proud of myself for doing 11 minutes of cardio! Sliding scale of accomplishment at work. I felt like I pushed myself and, as my stomach was deciding whether or not to accept the water I just fed it, I basked in the glow of the road to athleticism. I may be bumping along in the breakdown lane, but I'm on the road none the less.
We then moved on to several new exercises using bands. It's amazing to me how these tools of torture come in such happy colors! How a bright yellow band has the capacity to make a leg actually feel like it's going to fall off. And that water is not sitting well in the old "athlete's" body. I'm looking around for a trash can, but trying to be subtle. I'm cool. I'm fabulous. I'm gonna hurl water. But at least it's covered by insurance...
After finishing the nightmare yellow band exercises, we moved on to the bevy of exercises we did during the past 2 sessions. I needed a crane to move my legs, my stomach muscles were stuck in the "on" position, and I really wanted the room to stop jumping around. When did everyone start looking like they were reflections in a fun house mirror? Yes, I would like another cup of water thank you...
Bottom line, I got out of there without hurling. Victory! I also felt like I worked hard, and that in and of itself is very satisfying. I learned kind of what to expect when I go back to the gym to start doing cardio. And I learned that I shouldn't be mortified when I do return to the gym to do my cardio. I'll be ok if I do 10 minutes or if I do 20 minutes or whatever. As long as I don't throw up my water...
Tuesday, January 25, 2011
Let's get physical
I've got two physical therapy sessions under my belt and I can safely say I'm not quite as in the hole physically as I thought. I'm still in pretty bad shape, but maybe just at -50 instead of -100.
A good physical therapist is charged not only with providing the exercises and direction to make the body recover, but also giving realistic goals and programs so that progress is made and discouragement is minimized. I am lucky enough to have a therapist that is great in both. It would be hard for me to be encouraged by being able to do 10 reps of something that a year ago I could do 100. But Jeanne has a knack of making my 10 reps seem like 100 in terms of accomplishment. It's all about setting realistic goals and celebrating achieving them. I have proven completely inept in setting realistic goals for myself these days so this process is very good for me.
My muscles are tired and starting to get sore already. But that's good. It's good to be working hard again. It's good to be working my body again. It may not be as fun as I'd like, but it's good.
A good physical therapist is charged not only with providing the exercises and direction to make the body recover, but also giving realistic goals and programs so that progress is made and discouragement is minimized. I am lucky enough to have a therapist that is great in both. It would be hard for me to be encouraged by being able to do 10 reps of something that a year ago I could do 100. But Jeanne has a knack of making my 10 reps seem like 100 in terms of accomplishment. It's all about setting realistic goals and celebrating achieving them. I have proven completely inept in setting realistic goals for myself these days so this process is very good for me.
My muscles are tired and starting to get sore already. But that's good. It's good to be working hard again. It's good to be working my body again. It may not be as fun as I'd like, but it's good.
Saturday, January 22, 2011
Hi ho, hi ho, it's off to work I go...
I knew the day would come. The day when I would re-enter the real world. Not the world I've been living in that revolves around medical issues, but the world outside the confines of medication and limitations. The working world.
A little over a year ago I started working at the front desk of Brighton Gardens assisted living community. It was a part time gig, and I loved it. I answered the phones, greeted visitors, helped residents and did anything else anyone wanted to throw my way. By February 2010 I was also working in the activities office organizing their files and, again, doing anything anyone wanted to throw my way. But by April my body was breaking down and I couldn't make it through even my 4 hour shift. I was exhausted, weak, my stomach was constantly upset, my blood pressure was out of sight high, I couldn't concentrate and I didn't know why. That's when the Cushing's saga started, and my great part time job ended...or went on hiatus.
Last weekend I started working at the front desk again. The staff is great and only schedules me for 4 hours at a time. They understand any more than that is just a little too much for me. I was a little nervous at the start. I didn't know how well I'd hold up. But it worked out great. I ended up working in the afternoon all this week. I did crash hard on Friday night, but I other than that, I held up pretty well. I'm continuing the schedule next week too, and that will be quite the test of my stamina. However, as worn out as I may be, just having a "normal" aspect back in my life is well worth it.
Aging is an interesting process that we are all destined to go through. One of the reasons I enjoy this job so much is being able to interact with the residents and, in some ways, see my own future. There are so many characters at Brighton Gardens of all shapes, sizes and mental capacities. I'd like to think I'll be a Cassie when I get into my eighties. She is a bridge shark that revels the nickels she wins during her weekly game. Cassie can create the most amazing things from yarn and knitting needles, and is constantly on the go. Maybe I'll have a little Cookie thrown in. She is a tough lady packed into a 5' package, zooming around with her walker and spouting wisdom and joy as she goes. Cookie also makes a mean ginger snap. I got her to give me her recipe! Of course I'll probably have a little Jo thrown in. She isn't always on the same day and time as everyone else, and has a temper that can get a walker thrown at you. And I'm sure I'll have some Lena in there too. She needs to have things done just so and will insist on it. Get in the way of her on the way to a smoke break (never mind that she's on oxygen) and you'll get run over by a woman with purpose and a walker.
I've learned so much about life from just watching all of the residents at BG. Aging is not always a fun process. You need help that you never needed or wanted before. You don't always feel good. You can't do what you used to be able to do. You want to live your life the way you've always lived it even though you know it's not possible. These are my people. This is my place. If that means I have to deal with a resident that has lost his mail key for the 5th time in a month, getting yelled at because the evening movie didn't start at exactly the right time, searching for the occasional misplaced walker, flirting with a gentleman who may think he's talking to his late wife, or convincing someone that their husband is not at the restaurant waiting for her (since he passed away 25 years ago), then so be it. I always get more out of being at Brighton Gardens than I feel like I'm putting in. And for the first time in a long time, I can forget about Cushing's for a few hours a day. Life is good.
A little over a year ago I started working at the front desk of Brighton Gardens assisted living community. It was a part time gig, and I loved it. I answered the phones, greeted visitors, helped residents and did anything else anyone wanted to throw my way. By February 2010 I was also working in the activities office organizing their files and, again, doing anything anyone wanted to throw my way. But by April my body was breaking down and I couldn't make it through even my 4 hour shift. I was exhausted, weak, my stomach was constantly upset, my blood pressure was out of sight high, I couldn't concentrate and I didn't know why. That's when the Cushing's saga started, and my great part time job ended...or went on hiatus.
Last weekend I started working at the front desk again. The staff is great and only schedules me for 4 hours at a time. They understand any more than that is just a little too much for me. I was a little nervous at the start. I didn't know how well I'd hold up. But it worked out great. I ended up working in the afternoon all this week. I did crash hard on Friday night, but I other than that, I held up pretty well. I'm continuing the schedule next week too, and that will be quite the test of my stamina. However, as worn out as I may be, just having a "normal" aspect back in my life is well worth it.
Aging is an interesting process that we are all destined to go through. One of the reasons I enjoy this job so much is being able to interact with the residents and, in some ways, see my own future. There are so many characters at Brighton Gardens of all shapes, sizes and mental capacities. I'd like to think I'll be a Cassie when I get into my eighties. She is a bridge shark that revels the nickels she wins during her weekly game. Cassie can create the most amazing things from yarn and knitting needles, and is constantly on the go. Maybe I'll have a little Cookie thrown in. She is a tough lady packed into a 5' package, zooming around with her walker and spouting wisdom and joy as she goes. Cookie also makes a mean ginger snap. I got her to give me her recipe! Of course I'll probably have a little Jo thrown in. She isn't always on the same day and time as everyone else, and has a temper that can get a walker thrown at you. And I'm sure I'll have some Lena in there too. She needs to have things done just so and will insist on it. Get in the way of her on the way to a smoke break (never mind that she's on oxygen) and you'll get run over by a woman with purpose and a walker.
I've learned so much about life from just watching all of the residents at BG. Aging is not always a fun process. You need help that you never needed or wanted before. You don't always feel good. You can't do what you used to be able to do. You want to live your life the way you've always lived it even though you know it's not possible. These are my people. This is my place. If that means I have to deal with a resident that has lost his mail key for the 5th time in a month, getting yelled at because the evening movie didn't start at exactly the right time, searching for the occasional misplaced walker, flirting with a gentleman who may think he's talking to his late wife, or convincing someone that their husband is not at the restaurant waiting for her (since he passed away 25 years ago), then so be it. I always get more out of being at Brighton Gardens than I feel like I'm putting in. And for the first time in a long time, I can forget about Cushing's for a few hours a day. Life is good.
Wednesday, January 19, 2011
Shift down, there's a hill coming...
For anyone wondering, I did make my physical therapy appointment. I will be starting that wonderful experience on Monday. Just because my life isn't ironic enough, my appointment is with the same therapist I worked with when recovering from my hip surgery in 2009. I can't wait to explain what I've got myself into this time...I doubt she'll remember me. I didn't work with her for very long. But boy is she going to remember me after this. And not just for my winning personality.
Good news on the upset stomach front. I had been dealing with a really upset stomach for a while now that kept me from eating very much. When I was in Bethesda last week, we adjusted the dose of Muffy to try and alleviate that problem. I think it worked. I've put together 3 days without an upset stomach. I'm not really hungry, but at least I don't feel miserable all the time. Same with my energy level. Three straight days not feeling like all I wanted to do was to crawl back into bed. Things just might be looking up.
Well, I'd love to write more, but I've got to go do my exercises. And by the way, if I embark on this Mt. Everest sized up hill climb, none of you, my faithful readers, have any excuses to get out of your 2011 fitness goals. Get thee to the gym, the walking trails, yoga studio or whatever floats your boat. We'll all be in this together!
Good news on the upset stomach front. I had been dealing with a really upset stomach for a while now that kept me from eating very much. When I was in Bethesda last week, we adjusted the dose of Muffy to try and alleviate that problem. I think it worked. I've put together 3 days without an upset stomach. I'm not really hungry, but at least I don't feel miserable all the time. Same with my energy level. Three straight days not feeling like all I wanted to do was to crawl back into bed. Things just might be looking up.
Well, I'd love to write more, but I've got to go do my exercises. And by the way, if I embark on this Mt. Everest sized up hill climb, none of you, my faithful readers, have any excuses to get out of your 2011 fitness goals. Get thee to the gym, the walking trails, yoga studio or whatever floats your boat. We'll all be in this together!
Monday, January 17, 2011
Jack LaLanne much?
OK, I admit it. I haven't yet begun the physical therapy for my back. Actually it'll be more for my leg that is controlled by the nerve that was being pinched in my back, but why split hairs? I haven't got off my ass to make the arrangements for physical therapy. "That doesn't seem like Carol" you may be thinking. After all, I love to work out. Go to the gym. Sweat up a storm. It makes me feel good. And I had a great result from the physical therapy I did after my hip replacement. But in this case I've been conveniently avoiding it like the plague.
I don't usually want to bring you, my faithful readers, into the mind of the Princess. It's a weird place not to be entered by the faint of heart. I am going to make an exception here, however, given my need for a little extra moral support. Don't forget, it's all about the Princess...
When I look at rehab now, it's a daunting thing. I'm not coming back from 0 this time. This time I'm coming back from -100. I'm going to have to work for months just to get up to 0. My quads and leg muscles are incredibly weak right now. And the hip muscles in my left leg, the one using the squished nerve in my back, are practically non-existent. To do rehab on one requires use of the others. I'm just not sure I can do it.
Now I realize that this is a ridiculous thought. I can do anything. It may take a long time, and I might be really bad at it, but nothing is impossible. To think it is is just being negative. But that's all a judgement on physical ability. I've never been confronted with the mental up hill battle that is now in front of me. How do you keep yourself going when just moving is hard. Let alone working those muscles that move you. None of us love to do things that are hard and that hurt where the prospect of accomplishing the goal is so far off in the distance you've forgotten what it looks like.
Last week at NIH, I met with the physical therapist to get a few exercises I could do on my own until I can get physical therapy here in KC set up. It's horrifying and embarrassing just how weak I am. I did the exercises today and they wore me out. I know we all have to start somewhere, and any movement is good movement. But I saw exactly what -100 means. I've got a steep hill to climb.
Tomorrow I will call the physical therapy place and get set up. I won't like it, but I can't not do it just because of that. I guess when you're at the bottom of the hill, there's no choice but to start climbing.
I don't usually want to bring you, my faithful readers, into the mind of the Princess. It's a weird place not to be entered by the faint of heart. I am going to make an exception here, however, given my need for a little extra moral support. Don't forget, it's all about the Princess...
When I look at rehab now, it's a daunting thing. I'm not coming back from 0 this time. This time I'm coming back from -100. I'm going to have to work for months just to get up to 0. My quads and leg muscles are incredibly weak right now. And the hip muscles in my left leg, the one using the squished nerve in my back, are practically non-existent. To do rehab on one requires use of the others. I'm just not sure I can do it.
Now I realize that this is a ridiculous thought. I can do anything. It may take a long time, and I might be really bad at it, but nothing is impossible. To think it is is just being negative. But that's all a judgement on physical ability. I've never been confronted with the mental up hill battle that is now in front of me. How do you keep yourself going when just moving is hard. Let alone working those muscles that move you. None of us love to do things that are hard and that hurt where the prospect of accomplishing the goal is so far off in the distance you've forgotten what it looks like.
Last week at NIH, I met with the physical therapist to get a few exercises I could do on my own until I can get physical therapy here in KC set up. It's horrifying and embarrassing just how weak I am. I did the exercises today and they wore me out. I know we all have to start somewhere, and any movement is good movement. But I saw exactly what -100 means. I've got a steep hill to climb.
Tomorrow I will call the physical therapy place and get set up. I won't like it, but I can't not do it just because of that. I guess when you're at the bottom of the hill, there's no choice but to start climbing.
Saturday, January 15, 2011
Home again, home again, jiggety jig!
I apologize for the gap in my blog posts here. I did not take my computer to Bethesda. But never fear - I made it there and back without any problems. Given the weather around the country these days, that's quite a feat.
I got to the NIH Clinical Center on Tuesday afternoon. I'm starting to learn the routine now and breezed through admissions then went up to the 5th floor north west - my home away from home. Alot of the nurses remembered me and we caught up with my condition. They commented on how much different I looked from the last time I was there. I had lost 17 pounds in the time that I was away, but I can't tell much of a difference when I look in the mirror. My favorite nurse Casey got me checked in and all set up. We did vitals and went over the jammed packed schedule for my next two days.
On Wednesday AM I was greeted at 5:30 by a phlebotomist and her cart of supplies ready to separate me from about a gallon of my blood. What a way to start the day, huh? Then we started my 24 hour "pee in a jug" test at 6, sparing a little pee for other tests down in the lab. Later in the morning I took the test to see if I was still technically a diabetic. You have to draw a blood sample, then drink this glucose liquid (I chose orange flavored this time. Cola flavored isn't very good and those are the only two choices.). Additional blood samples are taken at 60, 90 and 120 minutes after. Then they compare all the samples to the baseline to see how well you metabolize the glucose. I am pleased to report that I no longer fall under the diabetic range! How awesome is that?
The best part of the morning was meeting with my gaggle. My biggest complaint since being on Muffy is my utter and complete loss of appetite, and being physically exhausted all the time. Of course not eating doesn't help my energy level either. Dr. Nieman, the head Cushings doctor-hoo-ha, noted almost immediately that it was probably the early onset of adrenal insufficiency. Muffy was doing too good a job and blocking too much of the cortisol. So we decided to cut back my dose a bit to see if that helps me feel human again. I really hope so. Having an upset stomach 24/7 is not fun. Not fun at all. Especially for an eater like me!
After meeting with my gaggle, I was off to the radiology department for a trans-vaginal ultra sound (enough said) and an EKG. All went relatively smoothly and by mid-afternoon, the hard stuff was done for the day. Of course I was still peeing in my jug. That goes without saying.
Thursday morning began with a visit from the phlebotomist, and the end to my jug-peeing thank goodness. We started a glycemic profile test that would run all day. They take blood right before meals, and then 1 1/2 hours after. Then one sample at bedtime just for good measure. I also had a full body DEXA scan and a long meeting with my doctor, Dr.Neary, to complete a bunch of study requirements and go over the schedule for the coming months. I also met with a dietitian, to help me work out how to get the nutrition I need when I don't want to eat anything, and my physical therapist. He showed me a few exercises to do while I get my physical therapy here (remember that nutty back surgery in October? I never got around to getting the p/t lined up after it) scheduled. They will also help with the leg weakness from the Cushings.
Friday morning after a trip to the pharmacy to pick up a huge bag of Muffy and two other prescriptions, I was ready to be discharged. So what did we learn over these fun filled 2 days? Well, in general I'm doing great. Off all but one blood pressure medication, and that one we cut in half. Not diabetic anymore, and cholesterol down. My body is still tolerating Muffy just fine. We did uncover a little thyroid problem, so I'm taking a bit of medication for that. In the big scheme of things, the doctors were not very concerned about it. I am losing weight too fast. Averaging 2 lbs a week. They'd rather see 1 lb a week. But that's going to be hard if I don't want to eat. Hopefully things will come together here in the next few weeks.
So there you have it. A travelogue from my journey to NIH. I'm sure you are all wishing you could share the fun, but I'm saving it all for myself!
I got to the NIH Clinical Center on Tuesday afternoon. I'm starting to learn the routine now and breezed through admissions then went up to the 5th floor north west - my home away from home. Alot of the nurses remembered me and we caught up with my condition. They commented on how much different I looked from the last time I was there. I had lost 17 pounds in the time that I was away, but I can't tell much of a difference when I look in the mirror. My favorite nurse Casey got me checked in and all set up. We did vitals and went over the jammed packed schedule for my next two days.
On Wednesday AM I was greeted at 5:30 by a phlebotomist and her cart of supplies ready to separate me from about a gallon of my blood. What a way to start the day, huh? Then we started my 24 hour "pee in a jug" test at 6, sparing a little pee for other tests down in the lab. Later in the morning I took the test to see if I was still technically a diabetic. You have to draw a blood sample, then drink this glucose liquid (I chose orange flavored this time. Cola flavored isn't very good and those are the only two choices.). Additional blood samples are taken at 60, 90 and 120 minutes after. Then they compare all the samples to the baseline to see how well you metabolize the glucose. I am pleased to report that I no longer fall under the diabetic range! How awesome is that?
The best part of the morning was meeting with my gaggle. My biggest complaint since being on Muffy is my utter and complete loss of appetite, and being physically exhausted all the time. Of course not eating doesn't help my energy level either. Dr. Nieman, the head Cushings doctor-hoo-ha, noted almost immediately that it was probably the early onset of adrenal insufficiency. Muffy was doing too good a job and blocking too much of the cortisol. So we decided to cut back my dose a bit to see if that helps me feel human again. I really hope so. Having an upset stomach 24/7 is not fun. Not fun at all. Especially for an eater like me!
After meeting with my gaggle, I was off to the radiology department for a trans-vaginal ultra sound (enough said) and an EKG. All went relatively smoothly and by mid-afternoon, the hard stuff was done for the day. Of course I was still peeing in my jug. That goes without saying.
Thursday morning began with a visit from the phlebotomist, and the end to my jug-peeing thank goodness. We started a glycemic profile test that would run all day. They take blood right before meals, and then 1 1/2 hours after. Then one sample at bedtime just for good measure. I also had a full body DEXA scan and a long meeting with my doctor, Dr.Neary, to complete a bunch of study requirements and go over the schedule for the coming months. I also met with a dietitian, to help me work out how to get the nutrition I need when I don't want to eat anything, and my physical therapist. He showed me a few exercises to do while I get my physical therapy here (remember that nutty back surgery in October? I never got around to getting the p/t lined up after it) scheduled. They will also help with the leg weakness from the Cushings.
Friday morning after a trip to the pharmacy to pick up a huge bag of Muffy and two other prescriptions, I was ready to be discharged. So what did we learn over these fun filled 2 days? Well, in general I'm doing great. Off all but one blood pressure medication, and that one we cut in half. Not diabetic anymore, and cholesterol down. My body is still tolerating Muffy just fine. We did uncover a little thyroid problem, so I'm taking a bit of medication for that. In the big scheme of things, the doctors were not very concerned about it. I am losing weight too fast. Averaging 2 lbs a week. They'd rather see 1 lb a week. But that's going to be hard if I don't want to eat. Hopefully things will come together here in the next few weeks.
So there you have it. A travelogue from my journey to NIH. I'm sure you are all wishing you could share the fun, but I'm saving it all for myself!
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