To Knitter and Cindym

Veteran support board users and new posters - use this forum to talk about whatever you want. Topics may be C. diff. related but are not required to be. Post here about posters' birthdays, holiday greetings, vacation plans, etc. If it doesn't fit in another forum, put it here.
Nancy1
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To Knitter and Cindym

Postby Nancy1 » Sun Mar 26, 2006 2:25 pm

I know you both are going through some bad times, and I've been thinking about you a lot and hoping things are better. What's up?

Knitter, talking about reading, these days I like to read nonfiction about how people have dealt with difficult problems in their lives. Someone from this site should write a book about beating cdiff! Anyway, I just finished Scott Hamilton's book ""Landing it." He had some kind of digestive disorder in childhood, just didn't grow, went to many doctors, none of whom really helped. Skating finally got him into a more positive mental state and he thinks that helped. Later his mother died of cancer. Then he got cancer, but survived. Inspirational!

Cindy, what's happening with your grandson's situation? And yours? Any progress?

Warm wishes and hugs!

cindym
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Postby cindym » Sun Mar 26, 2006 9:54 pm

Nancy1- My foot is still fat and swollen. The doctors still have no clue as to what it is (or at least do not agree). I go to see yet another doctor on the 29th and will have a bone scan scheduled at that time. I have had xrays, MRI and bloodwork and nothing has showed up as yet. However, I have not heard about the blood as yet.

The deal with my grandson is just like having cdiff.........no help! The reporter came out and did segment with me on film and told me she was to interview the eyewitness the following day. However, she has not contacted me as yet. Meanwhile the state is doing an investigation of the daycare facility and will have its report within 30 days. Pretty much it has been written off as a non-event due to the fact the little thing was not permanently damaged or visibly injured! I wonder about laws at this point in time to protect the innocent. I am still dealing with it and have not given up !
Cindy

Knitter
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Postby Knitter » Mon Mar 27, 2006 10:52 pm

I'll read anything right now that takes me away from myself and my "world". I just finished knitting a baby outfit and sweater for a woman who is custom making me a purse that looks stylish but is really an organizer. I will be getting that next weekend. I went looking at diamond rings today and think I have finally found the ONE. Now all I have to do is talk HIM into buying it. He said he likes it and it's whatever makes me happy as I am the one that has to wear it.

Went to the specialist today and found out she is not DR. WONDERFUL like I thought she was. I am pretty depressed right now and will post more about this tomorrow in my case history file, but for now I am alive and will have to make it through.

I start on Wednesday doing stool testing, one a day for three days, while still on 250 mg of Vanco 3 times daily. She says if the toxin is present, I will not get a false negative. She says if I have the Big D, the toxin is present. If not, then she is going to call it IBS and send me to a GI for a colonoscopy. That means I will no longer be going to her, and no longer be treated for C. Diff.

Right now I am too sick to give a damn one way or the other. My Gatorade is calling me. I am going to hide in my bed and pull the blanket over my head. I'll post more tomorrow.

Nancy, thanks so much for caring! It means a lot to me right now!
Vancocin 250 mg. 4 X daily, Bio-K+, 4 acidophilis pills. IBS, Type II Diabetes, A-typical Menieres. C. Diff. 6X/11 months til May/2006; recurred Sept. 26, 2010.
Take care, stay safe and be happy!
Knitter

Marcia
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Postby Marcia » Mon Mar 27, 2006 11:04 pm

Knitter
I'm sorry things are not going right for you right now. I hope the GI can help you more than that woman did. Not even with all the c diff breaks in Canada, people are not willing to do as much as they can to try to help their (and themselves) patients. It's not only good for the patient but it serves to further educate them on how to beat this. Have a good night, and hopefully tomorrow will shine brighter.
I saw an add in the newspaper about this lady giving piano and voice lessons. I told her that i did not wanted to learn how to sing, but i wanted to speak loud and clear (people say i talk soft or mumble or "they are deaf") she said well i would need to go over the situation with you. So today i went (husband went with me) she had me make some sounds, some breathing. Anyways it was different, and i think i looked like a fool in front of husband, but if he's been there for me with c diff, how much more humiliating could it get. So we have a date next week, her and I. He won't be coming, maybe i will relax more. Hopefully something good can come out of it.

Nancy1
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Postby Nancy1 » Tue Mar 28, 2006 1:47 pm

Cindy, I'm so sorry that your foot is still a problem. It occurs to me, were you checked for gout? I knew someone who had that and a swollen foot was part of the symptoms. I am glad that the state is investigating the daycare facility. Even if they don't fine them or anything, at least the facility knows they are being watched, so maybe they won't harm any other innocent little children. And maybe the reporter will still do some good.

Knitter, I am sorry your specialist isn't helping. That sucks. As Marcia said, maybe the GI doc will be more useful. Meanwhile, diamonds sound like a great morale booster. It is so hard to keep your morale up, so anything that helps has got to be good.

Hang in there, everyone! One of these days, we'll all beat this lousy @!#!

Marcia, how are you feeling? I know you went through a bad patch a few days ago. Singing/breathing lessons sound like a morale booster too.

Marcia
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Postby Marcia » Tue Mar 28, 2006 7:00 pm

Hi Nancy
Well last night i went to bed crampy and woke up crampy. It is slowly going away. It could of been the lime I put on my salmon, or an oreo cookie or a little soda i decided to have. I have to get some fillings in my teeth done in a week.
I did not contact the lady to teach me singing, i asked her if she could help me in speaking louder and clear. She said she could work with something of that sort to i will see how it turns. It's 20-40 dollars each visit. I just started yesterday, and have an appt. next week.
I've been working (job on training) it expires on May. I work 3-4 hours a day wich today i felt crampy but at work it makes me forget about it so i do not notice my stomach hurting when i'm busy doing something.
Daughter is with her grandma for spring break so this house is quiet and boring. How are you doing?

Lynne
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Postby Lynne » Tue Mar 28, 2006 8:48 pm

The more I read on this site the more I realize that I haven't had an original thought with regard to the experience of cdiff. I am sorry if I have offended anyone with any of my posts, as a "newbie" I see that I should have posted in other forums than this one. No one has said a thing but silence speaks volumes. I fear that I assumed a familiarity that was nonexistent. How crass!

I have abandoned my reading of Pulitzers and have picked up a PD James mystery and some nonfiction crime books. Just read, Journal of the Dead, a true story about 2 college boys that get lost in rattle snake canyon in N.M.. A real page turner.

Nancy1
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Postby Nancy1 » Wed Mar 29, 2006 12:43 am

Hi, Marcia,
I hope your crampiness goes away soon. At this point, I'm well, thanks. Just going from 3 days on vanco, 2 off, to 2 on, 3 off. I have relapsed in the past after 3 days, so it gets scarier now. Also, my husband should be getting his pacemaker in April and that's a worry. I hope all that goes well, including my not having a relapse then. Finally, a minor issue, I have a basal cell carcinoma, the least serious form of skin cancer, but probably won't have that taken off until May.

I feel like I've filled my quota of doctors and shouldn't have to see any more ever! I wish! My sister, who has cancer, has a great fantasy. She said docs should give out loaner bodies (like car shops give out loaner cars). Then our real body could sit in the doc's waiting room and have all the treatments, while we could be out having fun in our loaner bodies. I love it!

cindym
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Postby cindym » Wed Mar 29, 2006 9:22 pm

Knitter- Cdiff is the most disgusting disease around and it is like riding a roller coaster with all the highs (hoping you have found a good doc) and then zooming downward with reality! I finally have just given in to the fact that they can just give me the vanco and I will play with the dosage and continue trying to come off on my own. You finally just get to that place with this stuff!

Meanwhile I am having zero luck with doctors and my foot situation. I went today back to ortho who I was told would schedule a bone scan. He was VERY UPSET that my internist had not prescribed antibiotics but pleased that the pain is about 1/3 as bad as it was. He now refuses to do bone scan (saying he does not feel it warranted right now) although still confesses he has NO CLUE as to what it is. So now he wants me to go 4 more weeks to see if swelling will go down like the pain has subsided. GEEZ...........what kind of time bomb could I be sitting on and none of them know? It is very discouraging and scary at the same time. I now have seen 4 doctors and all of them are stumped! So, if just two of them would agree it would be a blessing. Meanwhile the internist is fighting to keep me away from antibiotics. I am suppose to call them immediately if there is any change!!!!!!!! I am so sick, tired and emotionally upset by all this.............I will join you by going to bed and covering my head up and pretending I am in another world! HA!

Hang in there and eventually you will just get to the place where I am if you can not get rid of it (cdiff)...........Just give me the meds and keep me well........I am sick of being sick!
Cindy

Bobbie
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Postby Bobbie » Thu Mar 30, 2006 12:15 am

Lynne,
Would have responded to you re. books, but having trouble with computer and might not be able to use AOL anymore so will use Internet Explorer. I am reading The Lighthouse by PD James. Wonderful book.

Jennie & Knitter,
Sorry you are still having a bad time. C. diff. can be such a difficult disease. (Difficle means difficult in Latin, and with good reason.) I believe Allison first mentioned this.

Knitter,
I PM'd you but not sure you got it. I was afraid doc's visit would be a letdown. Many times it's taken me days to recover from a doctor's visits. I always go in with such high hopes -- the letdown can be horrendous

Jennie,
Same with your PM, Jennie. Glad you are home safely. Capetown sounds beautiful. Is there any chance you could move there?

Hang in there. It's the little things that get us through the days!

diannestevens
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Postby diannestevens » Sat Apr 01, 2006 12:17 am

Cindym,
Could be gout but usually a doctor can diagnose that quickly. Last spring both of my ankles and feet swelled up and looked like an elephants feet. went to the ER and they did sonograms to make sure no blood clots but that was it. Then they diagnosed me with edema. Another misdiagnoses. The swelling went down after two weeks but that was with ice and staying off of my feet completly. The doctor did not rule out the posiblity of a alergic reaction to vanco. I still have problems like arthritis in them from time to time. Even my pharmacist said that my ankles did not look as though I had edema. I feel as though doctors are too quick to just slap a diagnosis on you and move you out like cattle.

Lynn,
Dont worry about offending anyone. And you are only human, I too posted topics in the wrong forums at first. I wouldnt worry about it. You probably have too much on your plate to worry about if you have offended anyone.

knitter,
You probably will test negative for c-diff since you are still on antibiotics. And I hope you fired Dr wonderful.
Dianne Stevens

Knitter
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Postby Knitter » Sat Apr 01, 2006 7:58 pm

Can't fire her. There is a shortage of doctors in this town, so if I fired her, I would have to go back to the GP and that was a nightmare right from the start. We shall see what happens after the testing is over with. I DID however decide to give the testing it's best shot, so I stopped the Vanco and Florastor altogether for now. I will start doing the samples tomorrow which will be 72 hours without Vanco. I feel crappy but I am doing what I think is the best thing for right now. We shall see.....
Vancocin 250 mg. 4 X daily, Bio-K+, 4 acidophilis pills. IBS, Type II Diabetes, A-typical Menieres. C. Diff. 6X/11 months til May/2006; recurred Sept. 26, 2010.
Take care, stay safe and be happy!
Knitter

cindym
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Postby cindym » Sat Apr 01, 2006 8:49 pm

Dianne- They have ruled out gout and my internist (who disagrees with the ortho) says it is not cellulitis. But both confess to not knowing WHAT it is. The plan now is to watch it for another 4 weeks (since the pain has become a lot less within the last 2 weeks) to see if swelling will also subside. If not the internist wants a bone scan and God only knows what the ortho will do! I am so fed up of having things that the doctors are not too up on! You know good and well-------2 months of a fat foot is SOMETHING! I am just hanging out waiting and hoping I will wake up and it will be gone............geez WHAT A LIFE!
Cindy

Nancy1
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Postby Nancy1 » Sun Apr 02, 2006 1:45 pm

Knitter,
Wow, it takes a lot of courage to stop your meds for the testing. I dread so much the pain, frequency, no sleep, and generally feeling like death without meds. How is it going? Are your symptoms worse?

Cindy,
I really hope your pain continues to lessen and your swelling goes down. I've just gotten plantar fasciitis (foot pain, worst in the morning, but little swelling), but that doesn't sound like what you have, does it? I thought maybe I got this in sympathy with you (you know, like men get sympathetic pregnancy symptoms)... LOL.

My GI doc basically gave up on me (he never had the guts to tell me either), so I know that docs can be both ignorant and arrogant. So far my ID doc is an improvement. For you both I'm sending all good vibes I can muster, for good docs (???), for healing, for better lives.

Knitter
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Postby Knitter » Sun Apr 02, 2006 5:58 pm

It's not going well, but at least I am providing them with samples (and oh my are there samples) that will be more accurate, I HOPE. I am gassy and crampy and crabby and hot and cold and have the damned insomnia back again. The D has stopped however, probably because of the pain pills I have been taking for the headache which has reared it's ugly head again. Only one more day to go and I can go back on my pills though. Silly me, I thought I had to go in every day with a sample. They told me Friday that I don't have to, just refrigerate the samples until I have all three and then take them all in on Monday. Thanks for asking and for caring! Life goes on.....
Vancocin 250 mg. 4 X daily, Bio-K+, 4 acidophilis pills. IBS, Type II Diabetes, A-typical Menieres. C. Diff. 6X/11 months til May/2006; recurred Sept. 26, 2010.
Take care, stay safe and be happy!
Knitter


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