Bad Week

[Bobbie]

Have had a bad week. Had one neg. test since infusion - don't retest often during previous bouts of C. dfif. as was usually neg. on old toxin tests. Have 2 upcoming trips so might ask for another PCR. Had 3 PCR's - all positive - this winter B4 infusion.

Saw my uro. for regular 6 mo. checkup the other day. UA was negative. He put me on a preventative dose of Macrobid years ago for chronic UTI's and diagnosed IC through a scope - never fun. 80% of UTI's are caused by E. coli & Macrobid (low offender for C. diff.) usually is effective.

GI in OKC insisted I be off Macrobid b4 infusions & as long as posssible afterwards. Have been off it almost 2 months. Taking several "natural" products. Uro. not happy. He wants me back on Macrobid. He was gone at Xmas when I had UTI -- caused by primeus mirabellus. He said he didn't know why PCP treated me. The initial test was negative but for some reason the lab sent it in for culture - which was positive for prim. mir. I asked for another test 3 wks. later. Same result. Uro. was out of town, and when I called uro. resident on call, he said, "Gosh, I don't know what to do with you." (Words I've heard so often.) Since both my g. mother & g. g. mother died of kidney disease, I was concerned & agreed to take ampicillin - knowing it was a "bad one." I am allergic to sulfa - better choice - but would try it again b4 ampicillin or any of the other "big offenders." Sometimes (found this out later) you can tolerate sulfa if it is given with an antihistimine or prednisone. (Have refused antibiotics in the past, but Dec. is a bad month for me anyway, & my defenses were down.) Since I hadn't had active C. diff. since l999 I hoped for the best.

Usually uro. is friendly and unhurried. Impatient the other day, however. Said he didn't know why PCP treated me with an antibiotic. Didn't turn on his computer which would have given him info. from PCP - same group of docs. Told me about his friend who is seriously ill with C. diff. - what I needed to hear. The bathroom was filthy - no antiseptic wipes. When I got home I called and told his secretary bathroom was dirty and I took antibiotic because of 2 tests results - not one. S..., you almost have to be a doctor to see one.

Doctor's office is close to assisted living where my mother lived for almost 7 years B4 she died. I drove over there, parked in front of what used to be her window, and cried. I am not a crier. I took my mom to the same group of docs. She had "shy bladder" -- couldn't "go" on demand. I would give her 3 bottles of water and wait with her for an hour, but no luck - until we left the doc.'s office. I took sterile cups to her assisted living & went there the next day to help her do a "clean catch" & then deliverd it to the lab." I think about her whenenever I go to docs. in that building.

Went to a soccer game tonight & and sat in the Budweiser section (all the free beer, brats, hot dogs, & nachos you can eat). I resisted all of them altho. my husband gorged himself. l06 degrees - drank 3 bottles of water. We lost 0-2.

I am sick of docs., C. diff., clothes and towels "ruint" from bleach. End of rant. BTW, I am getting a new hair style Monday. Perhaps a "new me?" Or perhaps I can run away with George Clooney - maybe he has a "mother fixation" - I am old enough to be his - probably.

[getwellsoon]

Bobbie, So sorry you are having such a bad week. I had a bad few days myself and I took Questran yesterday so no M today and feel better. We just have to let out all the anxiety and worry sometimes so going to the Dr. office and sitting there crying was probably good for you. I still cry and get anxious, I guess its another gift of CDiff. Try to hang in there Bobbie and know we are here for you and are holding your hand virtually. We get it !!!!!!!! I will keep you in my prayers that you kick these symptoms and start to feel better. A new hairdo will make you look and feel better, go for it. Hang in there, I know its hard but its all we can do. Carol

[Bobbie]

Thx., Carol. Think I'll go for the new hair style & George Clooney.

Sitting out in the l07 degree heat probably wasn't good for me but do like soccer - although we lost.

Took Questran years ago - didn't help me but did help my son. I miss my mother - a lot - but then many of us do.

[Kathy George]

Bobbie,
I’m sorry you are having a bad week, but I totally agree with Roy…… Don’t let life fall between the cracks!!!! When we unexpectantly loss our son, needlessly to say, our whole family was devastated. However, God had other plans for us; another beautiful son eight months later. Life is full of disappointments, but somehow, someway, we get through the turbulence. It is important to place the true value of life in the present station. There is not a day that I do not think of my son, but I know he is guiding me in the right direction each and every day. Your mother would want you to live life to the fullest as well. I love the hymn, “I will raise you up on Eagles Wings”.
Fondly,
Kathy

[Bobbie]

Yes, we never forget our mothers, or dads, or children - if they are here or gone. They are part of our lives and make us what we are. I used to have a large family - now most of it is gone -- or in the UK. I have one former sibling. My husband and I moved Mom here from MT in 2002. We had support from relatives there - now most of them are gone. When Mom was ill for so long, we were there for her - as she and Dad were always there for me. Hospice helped for 8 months - a Godsend. I have several friends who used to visit her, but she didn't want to see anyone but us as she withdrew. When she died, it made a big hole in my life -- which I filled with activities because I knew I'd lose my mind if I didn't. Some I don't enjoy and am going to drop. I like to organize "things." Just wish I got paid for it. Sold another article (for pay!) and am writing another.

Kathy, glad you are back. We missed you. How is your poison ivy/oak rash? I was concerned you wouldn't have a good time.

Roy, what did you "Brits" think of the Olympics' opening ceremony? I enjoyed parts (especially the "pastoral village" and the rise of the industrial revoluton (smoke stacks and Olympic rings were incredible) but a tribute to the NHS? And the queen jumping out of a helicopter? British humor? We still haven't received our "marching orders" so don't know when we are going to Bath. Am going to Charlotte, NC, to visit my friend. My husband is house/pet sitting.

Had a better day today. Isn't it amazing how our emotions are tied to our GI tracts?? Seratonin (mis spelled but too tired to look up), right?

[beth22]

Yup, serotonin - when it is too low you get inflammation. Just had mine tested - borderline low. I think it fluctuates a lot though. Too high is not good either.

Will we ever get well? I'm totally fed up too.

[getwellsoon]

I guess we are all kind of having a bad day, week, month, whatever. I lost my beloved sister 10 yrs. ago and I still mourn for her. We were very close and she died so young, 51. We were going to have such fun when I retired. We loved to go to Atlantic City, NJ and play the slots. Just her and I. I am still lost without her but life does go on. During this illness with CDiff I often wish I had her to talk to. Anyway, I'm sick of being sick also but I'm going to get up and do it again today. Its my Granddaughters 9th BD so we will have cake( which I can't eat) and open presents and have a good day. Now since I took the Questran the other day I'm having trouble with C. I wish I could just get regulated. I hope everyone has a better day and I'm taking an Ativan to get my serotonin level up. It helps every time. Everyone is in my prayers. Carol

[Bobbie]

Carol,
Am so sorry about your sister. Anniversaries are the worst. Do eat a tiny bit of cake. Celebrate! This d... (not supposed to swear on site but would love to do so) has taken so much away from us we need to enjoy what we can.

C. diff. makes us vulnerable to many things (emotional and physical) we would normally handle better back in our "normal" days & does a # on our finances.

After almost 20 years of expenses related to C.diff, we are fortunate to not be in the proverbial "poor house."

Happy Bday to your 9 year old g. daughter!

[getwellsoon]

Thanks Bobbie, Yes the anniversaries are the worst. I did eat a little bit of the cake like you suggested. Hope I don't pay for it lol but it sure was good. You hang in there also and we'll all get through this together. Carol

[Kathy George]

Bobbie,
I agree with the BIG Hole in your life when one close to you passes on!!!!! Busy is good, I’m going from 7am to 8pm each day. If its yard work, watching grandkids or waxing RV and/or cars, I make sure I’m busy. Being busy makes me feel young, and I don’t feel any different than I did when I was in my 30’s. Also, I don’t believe in ‘Strike Outs’ only ‘Home Runs’. Without them I don’t know where I would be today!!!!
On another note, vacation was a blast!!!!! Enjoyed fellow campers that we have known for over 12 years!!!! Only one mishap….. I took an accidental dive out of our utility trailer, (we tow it along with extra stuff; then make it into a pantry on wheels once we arrive) but no harm done, except embarrassment!!!! Glad to be back, as home is what makes my heart become completely peaceful.
Kathy

[Nancy1]

Carol, I am so sorry about your sister. My sister (and only sibling) died at age 59 in 2006. We were talking about doing all kinds of lovely travel together. I miss her every day, as I know you miss your sister. No one can replace our sisters.

On a happier note, I am glad that you had some cake. Yum.

[amyc]

Hi Bobbie, I'm sorry to hear you're feeling lousy again. I'd probably want to do a C diff test before I travelled, just to feel safe. I have read several articles that said the transfer has a high "primary cure rate" but that a few patients need a single course of vanco after the transplant to get cured--"secondary cure rate."

Sorry to hear your urologist wasn't very nice. You've been off the macrobid for a couple/few months now and had no UTI, so I have to wonder why he was bothered by success. I wonder if adding a very low dose of an SSRI might help to regulate those serotonin levels in your gut.

This heat is HORRIBLE. I'm kind of living like a hermit until it passes. At least it will be nice and cool in the UK.

[KateC]

Bobbie,
Sorry, I am just reading this now !
My life is so upside down that I can't get in here as often as I'd like & should.

Just wanted to tell you I've had these bouts too...missing my Mom more than ever lately
& it's been over a year- it hits me every night when all is quiet here & I can let the tears flow.
And I think when you are sick, you just want & need your Mom !

I had a bad week last week all around.
Had the GI bug that is going around & was absolutely certain it was c diff.
This prevented me from getting to NY for what my glaucoma specialist considered
an urgen visit as eye pressures are through the roof- so I was really freaking out !
My so called "friends" have been avoiding me- I guess I have too much baggage !
Life with chronic illness can be very lonely at times.

If you find yourself having one of those rough weeks don't hesitate to PM me...please.
I feel so bad that you were feeling like this.

Roy- I LOVED the queen's entrance- about time she got that hairdo messed up.
I think the whole royal family needs to take some lessons from Harry! He's the best ; ))

Kate

[Delta]

I think every one had some bad days and time in his life for quite sometimes. But the more important thing is that, how you respond to such situations and cop with it. As, in such situations we need to stay cool and calm and do the best we can, in order to tackle and get out of the situation. RAther than getting worried and losing heart. So, try to accept the facts and face them as a challenge in life.