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LUCKY-13's Photo LUCKY-13 Posts: 11,837
6/22/10 9:03 P

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Lynda,

Definitely saying more prayers in your behalf! I wish you didn't have to wait two weeks for the doctors to decide what's wrong. I just hope that once they decide what it is, and that it's not cancer, that the problem can be solved quickly and relieve you of the pain. I have faith in you and your ability to learn to do your own i-v. You're strong, a survivor, and one of the most determined ladies I know.

Many hugs and prayers coming your way,
Lucky

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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6/22/10 7:06 P

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I really appreciate all of the prayers and support from all of you. I missed not being able to post while I was in the hospital.

My condition in a nutshell is still unknown. It is either an acute bleed or a tumor. I will know which one in 2 weeks when then do another CT with contract. Unless it an acute bleed that resolves itself spontaneously (which the urologist do not think it is) I will lose my left kidney in approximately 6 weeks. If it is a tumor (which the urologist believes it is) it is most likely cancerous. I'll know the answers in about 2 weeks.

At the moment, I have a bacterial infection in the left kidney which is not the root of the problem. It does not respond to any oral antibiotics so I came home from the hospital with my central line still in tact. I will receive antibiotics i-v twice a day for the next 2 weeks. Home health will come once a day so I have to learn how to give my own i-v tomorrow morning by way of my central line. I'm learning more about medicine and anatomy and physiology that I ever wanted to.

Please pray that what is being seen on the CT is blood and not a tumor, that the severe pain will not return, and that I will be able to do my own i-v infusion of antibiotics.

Thanks, dear friends.

Lynda


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NIKEGIRL1967's Photo NIKEGIRL1967 Posts: 478
6/21/10 9:55 A

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Hi, Lynda...all that I can say to you is that i wish you a speedy, speedy recovery...i will keep you in my thoughts.

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LUCKY-13's Photo LUCKY-13 Posts: 11,837
6/17/10 9:37 P

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Lynda,

Although I don't know exactly what you're going through, I can imagine how frustrating all this is, and I hate the idea of you having to be in so much pain. I just hope and pray that the doctors can do something to ease the pain and take care of your kidney. You've been through so much lately!

You and your family are in my prayers! Please let us know how you're doing. I'm going to miss hearing from you!

Hugs,
Lucky

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
6/17/10 9:32 P

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Typmani,

I'm getting about to the point where you're at. Since stopping the Domperidone, I feel like the things I once could digest before I even started taking it, are no longer possible. Even carbs. I was able to digest a small amount of unsalted tortilla chips (no salsa = no fun!), but not any longer. I got pretty sick and don't think I'll be trying them any longer. Even mashed potatoes make me feel full for a long time. That "staying full" feeling is good because I don't have much of any appetite, but I hate the idea that I could get in that cycle of getting sick every night.

Oddly enough, I'm really not angry. I guess knowing that I could lose some weight pretty easily sounds good, I'm more afraid than anything because it feels like there's so much less that I can handle now.

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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TYMPANI's Photo TYMPANI Posts: 124
6/15/10 2:42 P

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ReadingDoc, I'm so sorry to hear you're having such a terrible time! It sounds like the hospital is where you need to be right now, though. Please get in there, and rest as much as possible (though that can be difficult in a hospital, and under such circumstances.)

Sending you hugs in my heart, and hopes of healing.
Take care of You.
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6/15/10 1:32 P

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SORRY I HAVEN'T POSTED MUCH LATELY. I'VE BEEN IN TERRIBLE PAIN SINCE SUNDAY MORNING. WENT TO ER YESTERDAY AND WAS DIAGNOSED WITH HEMORRAGHIC PYELONEPHRITIS WITH A LARGE CYST ON MY LEFT KIDNEY. THEY GAVE ME THE OPTION OF STAYING OR COMING HOME ON MEDS. I OPTED TO COME HOME. DID A LOT OF VOMITING DURING THE NIGHT. WHEN HOME HEALTH CAME TODAY MY BP WAS 160/100. TEMP WAS 101. THEY ARE TRYING TO GET ME BACK INTO THE HOSPITAL AS I WRITE THIS. I'M BEGINNING TO WONDER, WHAT ELSE CAN GO WRONG? PLEASE PRAY, THE PAIN IS THE WORST I HAVE EVER EXPERIENCED.
LYNDA

Lynda


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TYMPANI's Photo TYMPANI Posts: 124
6/14/10 4:21 P

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Okay, I need to vent a little. Forgive me in advance for any negativity...

I'm new to this game. I've been aware of having GP for about a month and a half, now. I did a lot of research on my own, and formulated a diet that would work for me. Basically, I blend. and blend. and blend... a LOT. I allow myself up to about half a cup of whole food (carefully chosen, of course) twice a day - as long as it's before 5:00pm. Everything else I turn into a soup or a smoothie, of varying consistencies. And it's worked extremely well. I don't have constant naseau. I haven't thrown up this entire month and a half. It's been... such a relief after roughly 18 months of constant sickness.

But I've been getting antsy, lately. I miss whole foods. I miss crisp, crunchy salads... rare steak... sandwiches! Oh, the textures! The thought of having my mouth full of "real" food... a good, hearty meal.

*ahem* Sorry about that. I don't wanna make YOU miss real food, too. It's just.. getting to be a struggle. I'm HUNGRY, dangit! lol...

So, recently I tried pushing my boundaries a little. I ate a whole cup of mac n cheese the other day. *ugh* Nausea... worst feeling in the world, I think. I had a cup of cereal on a different day. *bleh* I've tried a few different things over the past week. But anytime I've indulged in more "real" food than usual, I just feel sick. Nauseated. Yucky.

I have also been trying to get my sodium intake down to normal levels. I was hitting about 5-6,000 mg a day! Because I have been relying on cottage cheese for protein, and boullion cubes to flavor my veggie soups. But without the cottage cheese, I have a hard time keeping my protein up. And without the boullion, my soups just... don't have that savory, yummy flavour anymore! I try different spices, but it's not the same. And the spice blends that I DO like - have salt! What's a girl to do???

I'm going in to see my doctor on the 23rd. Let him know about my diet, and ask if the salt is really a problem for me right now. I'd much rather just ignore that for a while, and settle back into feeling comfortable with my eating lifestyle... satisfied and happy to not be sick all the time. I'd rather drink all my food than go back to that life. It's just hard sometimes, you know?

Thanks for listening. I hope I didn't bum you out. emoticon
It means the world to me to be here... to have this place to vent and share and know that people will understand.
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6/2/10 11:09 A

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Thanks Lucky,
The scar tissue will grow back. However, I have scar tissue from 13 abdominal surgeries dating back to 1971. Hopefully the amount of scar tissue from this one surgery would never equal the thirteen.

Thanks for your support and your prayers. You are a terrific team leader. Keep up the good work. I always feel like I am welcome on this team and that I am going to get an answer. That is so important. You mean a lot to me. Take care. I'll write again soon. For now I'm off on a mission of mercy. Tomorrow I get to clean the house and do last minute laundry and pack for the hospital and then Friday is my coming out party.

Love you bunches,
Lynda
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Lynda


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
6/2/10 6:33 A

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Lynda,

Hopefully the surgery will help! You've had a rough time and the docs need to get you taken care of! What can they do to minimize the scar tissue from growing back?

I'll definitely be praying for you, and eagerly awaiting your return to us!

Hugs and prayers,
Lucky

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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6/1/10 11:35 P

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Dear Lucky,
I'm having surgery on Friday morning. I saw the surgeon in his office this morning and he thinks that is the only option left. He's going to perform an exploratory and he's going to remove all adhesions and old scar tissue. If there is an obstruction he will also remove part of my bowel. The incision is going to run from just below my rib cage to just above my pubic bone. The only danger is from infection. He did say that there would be considerable post op pain, but he's going to give me a pain pump so that I can control my pain medication. That way I won't have to bother the nurses. As I said in the chat, I'm hoping that soon this will all be a bad dream. I would really appreciate your prayers that there would be no infection. It may be awhile before I can post again. Take care.
Lynda


Lynda


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
5/31/10 7:58 P

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Hi Lynda,

Bless your heart! I can only imagine how frustrating this is for you!

I don't think this is a part of GP, but I could be wrong. I know that as mine gets worse, it seems as if my intestines also get sluggish. And Miralax has become a good friend at this stage.

Things that might help: Gas-X (gas bubbles can hurt like heck and all the laxatives they had you taking could have had this effect), a heating pad to warm your tummy, hot herbal tea with honey, and sometimes I've had luck with squats (wakes up the sluggish abdomen. Maybe even sit-ups).

Let me know how you're doing. I'm praying for you! emoticon

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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5/30/10 11:47 P

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I spent the afternoon in the ER again. Yesterday I had 4 enemas, 2 ducolax, and a large bottle of Miralax mixed in 64oz of gatorade. The abdominal pain was so severe that I truly did not sleep at all last night. After church this morning I went back to the ER where my surgeon was on duty. He wanted to admit me, but the admitting physician did not. There was still significant impaction. Instead they gave me a "cocktail" of 8oz of mineral oil and sorbitol. There was success with the cocktail but the abdominal pain is worse. I'm supposed to wait until Tuesday and call the surgeon's office. I don't know if I can hang on until Tuesday. Please pray that I can. Is this a side effect of GP?
I'm very frustrated. This has been going on since March. Any suggestions?
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Lynda


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5/29/10 7:27 P

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Thanks. That sure beats what I've done--retreat! At the hospital where I volunteered until this week, it actually bothered the other volunteers to eat in front of me when all I was doing was drinking, so I stopped going to the cafeteria and drank my lunch at my desk instead. I really like your method better!

Lynda
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Edited by: READINGDOC at: 5/29/2010 (19:29)
Lynda


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LUCKY-13's Photo LUCKY-13 Posts: 11,837
5/29/10 3:03 P

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I'm so sorry you've had to go through this - especially at a church setting where one would believe others would be more caring and sensitive to other's limitations, and instead enjoy the fellowship of everyone there.

When it happens to me, like when my co-workers bring in food that I can't eat but all of them can, and I stick too my yogurt or whatever, I just smile and say "Oh, I know what you're really trying to say! You want some of my food!" I smile and then ask, "Are you jealous because I'm having this yummy (insert name of food here) and not eating what you're having? (genuine smile again) I'd eat some of what you're having if I could, but my doctor said that was a big no-no." If questions are asked, then that's an opportunity to educate them as to what GP is about and what happens if you eat something you can't digest. I usually assure them that their food looks delicious, but I'd really hate to get sick at the (name of event) and ruin everyone's good time.

This should stop the teasing, they get a better understanding of why you're eating what you are, and the remarks aren't snarky/sarcastic. You can still be your lovely wonderful self and not have to swallow whatever they're dishing out (pun intended).

Edited by: LUCKY-13 at: 5/29/2010 (17:02)
Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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5/29/10 12:58 P

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I need to learn how to "not eat" out in public at places such as church dinners, or restaurants. We have a dinner at church every Wednesday night and my DH likes to go. Obviously I can't eat what they serve, so I take my own "food." One night I took green pea soup (not split pea). Everyone at the table made fun of my soup calling it "swamp juice," etc. This not only embarrassed me, it hurt my feelings.

How do you all deal with this kind of thing? I just clammed up and drank my soup while it was still hot and swallowed my feelings along with my soup. By the way, we have not gone back to Wednesday suppers since.

Lynda

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LUCKY-13's Photo LUCKY-13 Posts: 11,837
5/23/10 3:06 A

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Tell us what you need. Do you need prayer? Positive thinking? An ear or shoulder? Do you need to vent - about anything you need to get out of your system?

Do you need someone to help you try to dig up more information on something, or find a way to make sense of what your doctor is telling you?

You can bring it to the team here on this thread, or you can Spark Mail me if you want/need confidentially, or even email me at my home: SequoyiaSun@bellsouth.net.

Don't be afraid to ask. We all want to learn as much about GP as we can, and as a team, support is part of the package. This team is my most important one here on Spark, and I'm dropping my involvement in the others to make sure our team members are getting support, answers, or just a place they can come and spill their confusion and frustration.

Love to you all,
Lucky

Life's an adventure ... take it one step at a time and don't underestimate yourself! You're capable of more than you think you are! How do I know this? You're still here aren't you? That means you haven't given up!


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