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2/7/12 2:06 P

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I went for my chemo today, my hemoglobin is real low again, but I was still able to have the chemo. Tomorrow morning I have to go to the hospital for a blood transfusion. I have been so tired these last two weeks, now I know why.

I also mentioned to my oncologist about my nausea happening more often than is usual for me, he said the chemo can aggravate the GP. I get so sleepy from the Compezine, he's going to have me try Zofran during the day instead, if my insurance ok's it.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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1/26/12 1:00 P

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I hope the PT helps and doesn't hurt! emoticon


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
1/26/12 1:57 A

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Today I saw an orthopedic doctor who said it doesn't appear my hip is causing the problem with my leg, so he's not sure what's causing it either. He wants me to do physical therapy for awhile and see if it helps. Then I went to PT for the first time. He doesn't have me doing much right now, mostly 'try this position and see if it makes it better or worse'.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
1/23/12 9:55 P

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I saw my GI specialist today. He reviewed the information about the link between Ehlers-Danlos Syndrome and Gastroparesis. He seemed to believe it is a possibility but I need the EDS diagnosis before we consider treatment based on that. He doubled my domperidone to 20mg 4x/day, put me back on pantoprazole, and is giving me a medication that should help dull the pain in my stomach when I eat. Let's hope this helps! I also gave him the paperwork to extend my FMLA, but we didn't talk about how long to put me on it, so I have to wait and see what he sends in. I told him my primary doctor doesn't know anything about GP and she is under the impression that many people with GP live mostly normal lives (hence why she's deferring to him) and he said it's not true as many really suffer from the condition.

I also had blood taken today (to check my magnesium levels) and got an EKG (he said I looked great - and so did my EKG haha) because of the domperidone. Plus he got a good chance to see how little my brain is working at this point, so I'm really hoping he will help with the disability paperwork.

On the flight out here from MN we had a layover in Chicago. Since I can barely walk I'm using the disability services at the airport, where they provide a wheelchair and someone to walk me around. Well the layover was only an hour from when the plane landed until the next flight boarded. It seems like a lot until you realize how long it takes to get off the plane, figure out where to go, visit the bathroom (since I can't safely go on the plane), and get to the new gate. So we were trying to get off the plane as quickly as possible, since the wheelchair should be waiting for me. Unfortunately, I was left at the end of the jetway waiting for the chair for 20 minutes in the bitter cold - after even the captain and crew were off the plane! I complained to the airline (because that's not providing the required disability services) and today I got a call back. Due to their lapse, they're giving my father and me discount vouchers for a future trip. That's great (considering neither my parents nor I can afford these trips) but I just hope they figure out where things went wrong so it doesn't happen again.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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1/10/12 3:16 P

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Cardiologist appointment yesterday went fine; no problems at this time, but he ordered another heart echo in March just to make sure the chemo isn't damaging my heart. He's not worried about the rapid heartbeat, that is something that is normal with chemo, especially with as long as I have been on it.

Speaking of which, I was suppose to have chemo today, but they couldn't do it because my WBC and platelets were too low, we will try again next week.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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12/25/11 2:15 P

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It's on the 11th.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
12/25/11 1:34 P

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Do you know when you're seeing the surgeon?

Lately I've been finding that when I call to set up an appointment if I give them a few of the serious issues going on with me and explain that I'm really not doing well the schedulers will try to get me in sooner. It's gotten me in several appointments weeks or months faster than a normal initial visit should happen. Whatever it takes to get the help we need, right?

I really hope you can find some peace and joy the next few days. It's the holidays and we should have a little of each for all of us.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
r

My sparkfriends are my greatest support and I'm grateful for it.
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12/25/11 11:55 A

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Thank you; the swallowing issue is better, but the heartburn is getting worse. But I am hanging in there til I can see the surgeon about getting the endoscopy done. I'm still taking my Protonix, but can't take my antacids right now with the antibiotics I am on for the UTI, but I will be done with those Tuesday morning.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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12/24/11 3:53 P

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It sucks that all of these issues are hitting right during the holidays. I hope they can ease them up so you start feeling better.
emoticon

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
r

My sparkfriends are my greatest support and I'm grateful for it.
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12/23/11 10:41 A

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I have been away for a few days because I was in the hospital. Not feeling good from side effects from the radiation. It started out with pain when swallowing, (throat burned from radiation), and I wasn't eating enough or drinking enough fluids. I got to feeling kind of weak and shaky, and had a rapid heart rate.

Went to the ER Saturday, at the time I went in my heart rate was 151. They admitted me to the hospital and did some tests and gave me lots of fluids. Also found out I had a UTI. Came back home Tuesday but wasn't online much because of a migraine that lasted til early in the evening last night.

I have an appointment with a cardiologist on the 9th; my oncologist noticed that on the heart ultrasound I had in the hospital that one of the heart muscles is pumping too slow and he wants to know why. I also have an appointment coming up with a surgeon to get set up for an upper endoscopy to take a look at my throat.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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12/12/11 11:18 P

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Lots of crazy going on with me... and total exhaustion. How's things with everyone else?

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
11/29/11 8:07 P

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I'll post a blog a little later, but after finding out it is nearly impossible to schedule an appointment with UM Physicians for the liver specialist (It's been 3 full work days and they haven't called - I tried calling yesterday and today and can't get anyone on the phone who can actually schedule it!) I'm completely disappointed in yet more doctors in MN. If being underweight and being in horrible pain every time I eat or drink anything is not urgent, then that's ridiculous.

So I called Temple University Hospital in Philly (Where Amy went). After just a few minutes the general scheduler sent me to the GI scheduler to get an urgent appointment. I'll be there all next week for the full set of motility testing. It's incredible to find a place that cares when I've done nothing but battle MN doctors to even be listened to!

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
11/23/11 8:07 P

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The past 24 hours has been insane for me. Check out my blogs for info.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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My sparkfriends are my greatest support and I'm grateful for it.
1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
11/21/11 8:54 P

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I'm glad it won't last long and each session will be quick.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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r

My sparkfriends are my greatest support and I'm grateful for it.
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11/21/11 5:23 P

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I know it will be a short course for the hip, just 3 weeks; my doctor wants to be able to do it again in the future if the need arises; I've already had it twice in the other hip and I can't have any more in that one. The spine will probably be 6 weeks. I go every day, Monday through Friday. The treatments themselves only take about 5 minutes.

I go at 2:12 every day. The reason for the odd time is that the schedule the appointments 12 minutes apart.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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11/20/11 5:42 P

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I'm sorry if you mentioned it and I forgot, but how long is the radiation treatment expected to last and how many times a week will you get treatment?

I really hope it helps take away at least most of the pain.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
r

My sparkfriends are my greatest support and I'm grateful for it.
MOM2ACAT's Photo MOM2ACAT SparkPoints: (190,535)
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11/20/11 3:48 P

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Got a call from the radiation center this afternoon, I start tomorrow.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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11/16/11 5:34 P

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First Gemzar went ok; had some bad heartburn last night, but I had that with my last chemo too; it's only on the night after my treatment that it's a big problem. With this new one, I have diareah as a side effect instead of constipation. Guess I will have to stock up on some Imodium.

Had my radiation consult today, besides having the right hip done, I also need a spot on my upper spine done; there is an area there that is causing pain that radiates to my shoulder. Possible side effects for the spine include irritation to the esophagus. I don't think it will be too close to my stomach though; the last time I had rads to the spine, some of it went through my stomach, which is how I ended up with the GP.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
11/10/11 10:51 P

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I talked to patient services at Mayo today and told them what happened while I was there. Not sure it's going to do any good, but if it corrects how the doctors treat their patients and helps people be treated better, that's what matters. I wrote more about it in my blog.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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My sparkfriends are my greatest support and I'm grateful for it.
1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
11/8/11 6:32 P

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Best wishes to you. Hopefully the new chemo will do it's job and hold back the mets.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
r

My sparkfriends are my greatest support and I'm grateful for it.
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11/8/11 3:58 P

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Next week I will be starting a new chemo, Gemzar. I will get it for two weeks in a row, then a week off, for 3 months.

The lesion in my right hip is in a spot where it is causing pain, so I will be seeing the radiation oncologist about that. Waiting for a call to find out when that appointment is; it couldn't be made today because they need to see my bone scan and x-ray first.

Right now, my GP has flared up a bit, stomach is still irritated from the Zithromax I was on last week for a sinus infection. Not sure yet how this new chemo will affect my GP.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
10/4/11 7:40 P

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I have an idea and I'm wondering if anyone is interested.

Last year I tried bell ringing for the Salvation Army for the first time. I really felt good doing it. So I was thinking this year I want to do it again. Well, they put a little sign at the top of the stand showing your name and if you're working with an organization. So I want to put that I'm working with G-PACT.

I'm wondering if anyone else would be interested in doing it also. You can sign up for as little as 2 hours and can take breaks as needed. They have the kettles up for a month and a half between mid November and Christmas, except Sundays and Thanksgiving. I think it would be a good way to get people to see the name G-PACT and maybe get curious about what it is.

I'm going to do it, and I'm hoping others will be willing to sign up for at least 2 hours. Here's the FAQ if you want to find out more. www.thesalarmy.org/chris/bellringing
fa
q.htm


~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
r

My sparkfriends are my greatest support and I'm grateful for it.
1STATEOFDENIAL's Photo 1STATEOFDENIAL Posts: 4,529
10/4/11 2:39 P

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What a strange turn of events to be studying it then be afflicted. But it could've been a saving grace for you as well, as you clearly had a doctor right there who knows what it is! Many aren't so 'lucky' to have access to doctors who understand. So I'm glad you have that going for you. Plus, as you said, your classmates can learn from your experience more about what this condition really is like. Kudos to you for being willing to help share knowledge!

If you're complaining, I don't see it. You're going to be stressed out and exhausted from what you're going through. So I just want to point out I don't see it as complaining as it is venting what is annoying you.
emoticon

If there isn't much they can do about alternate ways to learn, would it help if you could have pillows, blankets, a more comfortable chair, a tape recorder (to listen to the lectures again later), or something like that to allow you more comfort? Of course, you don't want to fall asleep (so put the pillow behind the back or under the behind instead of under the head hehe) but that might help also. Of course being on TPN isn't going to be the most comfortable as it is, but I'm just trying to think of ideas that might help with the exhaustion and any pain you might have (I haven't been on TPN so I don't know if you will or not). If you're standing and walking around a lot then maybe having a stool or small tray to set things down would help also, instead of having to carry it.

The reason I'm trying to help give you ideas is because I know things are hard enough on me - and I'm not on TPN and have a job where I sit at a desk most of the day. Yet I have to use my breaks for several of my daily meals and when I don't feel well I either have to slow down or go home. I re-learn over and over again I shouldn't push myself or my condition worsens. So I'm just attempting to help in whatever way I can.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
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My sparkfriends are my greatest support and I'm grateful for it.
GUTHRIESM's Photo GUTHRIESM Posts: 47
10/4/11 11:11 A

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I am in a unique situation- I am in PA school. We even studied GP last semester - right when mine started (but we didn't know it at the time). In fact, my specialist is the doctor who gave the lecture!

They are doing a lot for me but attendance is something they can't work too much around. I'm not really complaining about attending class, just wishing the TPN was shorter than 14 hours. There is no way I can avoid having it at school. But I also figure this can be a learning experience for my classmates too.

Don't think of organ donations as giving up part of yourself to keep a total stranger alive. It's really a total stranger giving up almost all of themselves to keep part of you alive. ~Author Unknown

"It's tough to make predictions, especially about the future." ~Yogi Berra


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10/4/11 10:51 A

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I'm sorry to hear that it has gotten so bad, but I'm glad they were able to get you onto TPN outside of the hospital. It is a tough road, but hopefully you'll settle into a new normal soon.

Just an idea: could you talk to your professors about ways to do as much work as possible from home? Maybe if they scan their lecture notes, or can send a video of their lecture to you so you can spend more time at home and less having to go back and forth to classes it will help you. Understandably they want you to be in class, but with medical conditions like this they might make some exceptions. Even if it is only a couple classes a month that you can find a way to participate from home, it will save you much needed energy. I find when you have a medical condition schools tend to be more willing to work with you on alternative ways to do the work, as long as you prove you have every intention of performing the work as best you can.
emoticon I know this can all be overwhelming, but know that this team is a good place to ask questions AND to vent any frustrations and anger you might have. You can also message me if you want to scream at the world - I'll be happy to listen.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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My sparkfriends are my greatest support and I'm grateful for it.
GUTHRIESM's Photo GUTHRIESM Posts: 47
10/4/11 8:48 A

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Hiya - so I managed to go from bad to worse rather quickly. I spent all of last week in the hospital and am now the owner of PICC and nightly TPN. I am tired and worn out but am back in grad school as of yesterday at 8am.

Don't think of organ donations as giving up part of yourself to keep a total stranger alive. It's really a total stranger giving up almost all of themselves to keep part of you alive. ~Author Unknown

"It's tough to make predictions, especially about the future." ~Yogi Berra


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9/25/11 8:41 P

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I finally went a week without a flare, but it wasn't a good week. I think I've just gotten so downtrodden by the flares that I'm now fighting them as hard as I can. Now this weekend I've felt terrible. I've just wanted to lay on the couch all weekend. I should've done laundry today, but every time I tried to get up to do something within a few minutes I nearly fell over in exhaustion. I keep eating, hoping that extra calories will help, but it's not helping. There's so much I need to do around the house but I'm just so worn down and exhausted all the time, especially with working full time.

3 more weeks til Mayo.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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My sparkfriends are my greatest support and I'm grateful for it.
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9/24/11 10:38 P

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I just wanted to stop by and say God bless you all and may God watch over each and every one of your endeavors.

I love you sll bunches.
Lynda


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9/21/11 2:21 P

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I figure it's worth the try. I've heard the only difference between mayo and miracle whip is that MW add spices to the regular mayo recipe. I used to avoid mayo and go for MW more often, until I realized it was making my stomach upset and making my GERD worse.

I've had a flare for half of each of the past 4 weeks... So far this week I'm teetering on another. I know it's due to a lack of sleep (less than 6 hours I can't digest everything from the day, less than 5 puts me into an instant flare, I should have 9-10 to be able to eat decently) though I can't seem to get to bed earlier. I do my best, but then something tends to happen to cause me to get to bed late.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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My sparkfriends are my greatest support and I'm grateful for it.
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9/20/11 5:18 P

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Maybe I will give the mayo a try.
No issues today so far with the diarreah, but I haven't had a "real" lunch today either. I just had the saltine crackers with peanut butter that I brought with me to chemo.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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9/19/11 7:39 P

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No, it couldn't be digested that fast. ('Normal' people take 24-48 hours to have food pass from one end to the other.) Though, some foods are like triggers that can cause the body to do weird things. It could be something in the egg salad mix is upsetting your stomach so your body 'clears out' to make it easier to 'push it through'. Miracle Whip has spices in it that Mayo doesn't. I use light or low fat mayo (no fat mayo tastes horrible to me - the light tastes a little better than the low fat, but either still gives a decent taste). Maybe you could try switching if you can find a way to try it without buying a whole bottle/jar. I switched off Miracle Whip maybe a year or two before I was diagnosed because it was bothering my stomach too much.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


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9/19/11 5:41 P

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I've had those "burps that hurt" too; usually it's a few hours after I've had a chemo; I can feel them traveling all the way up my esophagus.

The last two days I've had egg salad sandwiches for lunch; normally, something that does not bother me, but almost immediately after I am done eating, I will get bad stomach cramps, then have diarrhea. I can't see how it can be digested that fast, even though I take my ethromycin before lunch. Then about an hour after the diarrhea episodes, the pain and the cramping pretty much stops. Eggs usually don't bother me at all; I often have them for breakfast scrambled or poached, and when I make egg salad, I don't use mayo, I use light Miracle Whip. Well, I still have one boiled egg left in the fridge; I guess when I eat that one I will have it plain instead of making egg salad with it. Going to wait a couple of days though before I try eggs again, since I have chemo tomorrow.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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9/18/11 9:26 P

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I'm also wondering if anyone else is having problems with abdominal breathing. Whenever I'm in a flare I can't expand my abdomen to breathe into the bottom of my lungs. When I'm not in a flare I have no problem doing it.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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9/17/11 5:39 P

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Please read the blog that I wrote today. It saddened me to have to do it, but sometimes we just have to make hard decisions for our own good.

Have a great weekend.

Lynda


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9/17/11 4:00 P

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Better to be safe and have it checked out. Hopefully it won't be much and/or can be easily treated.

Question for everyone: Frequent burping is common for people with our condition. But I'm wondering, how bad is it for you? For me, 10-30 minutes after I eat I have several large burps that tend to hurt as they come up, followed up with multiple smaller burps. This happens no matter what I eat. I'm just trying to gauge if this is something I should bring up at Mayo or not.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
r

My sparkfriends are my greatest support and I'm grateful for it.
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9/16/11 3:40 P

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Had a rough night with a migraine last night, but feeling better today.

Went to the eye doctor for my annual check up; was told today I need bifocals. Getting a pair of the no-line kind, and new frames too. She also found retinal lesion in my left eye; probably nothing to worry about, but with my history of cancer, she wants me to get it checked out with a retina specialist, so I will do that next month.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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9/15/11 3:42 P

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Today I am feeling the chemo side effects; no nausea, but feeling crampy and bloated; had to use the M.O.M. today too. It wouldn't be so bad to deal with, but I am also dealing with a headache triggered by the change in weather, and I did not get enough sleep last night; kept thinking about my dad.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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9/14/11 9:27 P

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I'm glad you were doing okay today.

I've been having a sorta flare for the 4th time in 4 weeks. I'm starting to think I'm not going to get back to where I was just a few months ago. Mayo can't come soon enough now.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
r

My sparkfriends are my greatest support and I'm grateful for it.
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9/14/11 4:41 P

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I usually have bad heartburn the evening of my treatment, despite the fact I am on twice daily Protonix. I usually get a flare up of my GP and IBS during the 2-3 days after.

I was really lucky last night the heartburn was mild, it didn't keep me awake so I was feeling pretty ok today for my dad's burial.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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9/14/11 2:14 P

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Of course, stress is always a factor. Hopefully it will settle back down soon. Is the chemo still giving you flares about a day after?

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
r

My sparkfriends are my greatest support and I'm grateful for it.
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9/13/11 7:23 P

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Lynda, I hope you are still feeling good!

I had a flare up of my GP last night around bed time; not sure what triggered it; I didn't eat anything out of the ordinary. I think it was just stress, knowing I had chemo coming up today and my dad's burial on Wednesday. Thankfully, my stomach was settled down again this morning.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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9/3/11 10:38 A

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I feel awesome this morning! I've been up since 4:00 am (don't worry, I went to bed at 9:00). I have done the monthly budget, gone through all of the things that have piled up on my desk over the past month and actually dealt with them and didn't just move them around, written 3 thank you notes, etc., and installed a hand held shower massage in Vince's bathtub which doesn't leak at all. And it's only 8:45. How's that for a run-on sentence?

I hope that you all have as good a day as I already have.

Love you all bunches,
Lynda

Lynda


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9/2/11 2:59 P

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We have had stormy, unstable weather since last night; nothing severe, but I had a weather triggered migraine last night. Been trying to stay calm and quiet today, not doing much of anything, just relaxing until it's time to go the visitation tonight. Trying to avoid another headache. Doing my Sparking early today then it will be time for me to start getting ready to go.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



 current weight: -1.8  under
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9/1/11 3:46 P

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I hope you can get on normals sleeping schedule soon! That is great that you are not having seizures.

I was so discouraged the other day, trying on my dressy clothes trying what to decide to wear for my dad's visitation and funeral. Only one of my really dressy tops fit, even though I am at the same weight I was when I bought them a year or two ago, it's the darn bloating from the GP that gives me a "poochy" stomach. Went shopping today with my mom and found another top, with a cute cardi to go with it, so at least I feel good about how I look if nothing else.

Managing ok with the GP, despite missing some of the doses of my meds while my dad was in the hospital. It's mostly my IBS acting up now, that gets triggered by stress.


My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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9/1/11 3:24 P

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Well, I had my EEG done yesterday and I am NOT having seizures! My neurologist says that my episodes are being caused by prolonged extreme sleep deprevation and stress. She showed me on the printout which squiggly lines indicated it. This is not a surprise since I have only been averaging only 4 to 4 1/2 hours of sleep a night for more than a year. She put me on medicine for this 3 months ago, but because it made me sleep so soundly I didn't hear Vince call me during the night and that made him go balistic so I didn't take it. The vast majority of the time when he has called me at night it has been for frivolous things that he either didn't need or could have gotten for himself. Once I am awake at night, I'm up for the rest of the day. Now, I am not only to take the medicine nightly, but I am to close my door and to lock it. Once Vince comes home on Monday, and the dogs go back to sleeping with him, I will be able to start my new routine. My neurologist believes it will take up to a month to establish good sleep patterns. I won't know how to act to get 6 or 7 hours of sleep each night. Who knows I might actually learn to like it. As far as the passing out, I'm on Xanax for a while for stress and that should help a lot. Let's pray that it does.

That's all for now, believe it or not, I'm going to take a "Nanny Nap."

Love you all bunches,
Lynda

Lynda


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