Kay, you should really write a book about your farm one of these days. You have a great way with words. I can just see the angry animals with there wiley coyote signs saying "feed us".

I think there's something in the air. A lot of us have been tired, etc lately. Hope you feel better soon.

Renee, hope your friend can bail ya out. It's awesome you know someone who is great at decorating cakes. LOL, I think I did a good job if the frosting manages to be only on the cake. It's close to abstract art for me.

Vonn, hope you have a productive day. It's fun working with crafts.

~~~~~~~~~~

Good morning all Just sitting here with my usual pot of coffee trying to wake up. One cup at a time, LOL

Have not wanted to get up the past couple of days. Which is really disappointing since the weather is so awesome right now. If this keeps up, maybe should call the docs. ***cringe*** Being this tired is not normal for me, and you know it's bad when I'm thinking of calling in my medical people. Not a big fan of docs. Since I know they can't give me any fatigue meds, a part of me is just not sure what they could do.

Oh well, enough of that talk, LOL. I don't think I'm going to my aerobics class today - woke up too late, but I hope to get in some landscaping later on.

Hope everyone has a great day

I know I did a good job when the frosting stays on the cake. Seriously!!! I made a cake for one of DD's b-day with butter cream frosting and the frosting separated and slipped off the cake. I am not a Domestic Queen when it comes to cooking.

As for the fatigue . . .I know exactly where you are coming from. It gets frustrating after a few weeks of it and then you get so sick of it you call the dr. I too hate calling the "Big Boys" in. I don't want to be poked, prodded, questioned, etc because I hurt and/or am too dang tired to even go. lol.

I too ended up calling the dr and left a voice mail message with the secretary. I haven't heard back yet but I haven't pursued calling again. At my church there are 5 of us with MS. My Mom saw one of the ladies the other day and she wasn't doing well either. It finally dawned on me that its the humidity that is getting to me, not necessarily the heat. Heat wise it has been a mild summer, humidity wise it has not.

Hang in there Fin! Fall is coming soon for you guys. (I have 4 more months of this carp! lol)

Hey Jenn ... remember: listen to your body - and try not to fight it ... everyone has been telling me lately - take your time, it'll all come together ...

I'm not the patient of peops .. are you eating foods with Omega3?? I notice that if I don't have fish often enough, I get droopy ...

no lecture ... just read Kay's post ... got pooped reading it!! LOL

Renee ... after I read your post about the cake situation ... ah, get an ICE CREAM cake!! and after you get back to SC and unpacked - then make a cake to celebrate!!

Well, we fired the new urologist. Yep, he called yesterday and spoke down to us as if we were asking for a miracle. He seems to think waiting 34 hours for a call back is not so bad. I told him for the normal UTI, yeah but for Jim he could be in a crisis by then. I also told him we are not seeking special treatment, just the right treatment.

Anyway, after running off our expectations he said we are asking him to cure Jim's bladder just like asking to cure MS. What an ****. We were highly offended. We just want Jim to be UTI free for awhile and not have so many. Find out the problem of WHY he has one after another. Is that so hard? I mean it's not like we are asking him to cure cancer or something.

Anyway, we hired a new doctor and Jim is set up to see him on the 30th. He's from Rush and comes highly recommended by the office. She said her fiance has the same problems and was very compassionate about Jim's ms and constant problems. I was so nervous on the phone and she relaxed me and Jim. Now, that's what we're talking about! Compassion, simple. Wish us luck. Jim stops Levequin on Saturday so that will give us four days off the antibiotic to get a fresh sample for the new doctor.

Live and learn, that's what we have come to know. It doesn't matter where you go, you must be in charge of your healthcare. Never take condescending tones or feel like your just a number on the doctors cell phone. And never, ever accept any doctor speaking down to you and saying your asking for too much. Even if you are, a good doctor will be compassionate and understanding that your only seeking answers and care. Oh, and if the nurses tell you to get a second opinion and even suggest a different doctor, take notice.

Whew, OK, enough of that. Jim and I are headed out to see my cousin today and then get some wrapping paper for my little cousins b-day gift. I am hoping to find Hannah Montana wrap since she is a fan and the party is a Rockin' Hannah Montana party. lol

To all of you have a good day and I hope your feeling better. Jenn and Trish, I know you must not be well if your thinking of seeing the doctor. I hope this doesn't last long and your both back on your feet soon.

to everyone!

ahhhh, Sandy, I know what you mean !!

I really get uncomfortable when doctors talk down to me, as if I was stupid, or a child.

just because I don't know all their big medical words, that's just because I haven't *learned* them yet, not because I'm dumb...

patience, respect, and compassion, that shouldn't be too much to ask.

and I shouldn't have to be constantly reminding myself that doctors are human too... they ostensibly got *into* the profession, because they cared... now why have some forgotten THAT ??

ah well... now you know why I tough out so much... and haven't been to a neuro, or a doctor in four years, despite having SPMS.

some may say I'm crazy, but Rx meds can be gotten here just by knowing the name, having the $$, and walking into a Farmacia...

so, I'm basically self-treating at this point.

but if I *DID* have constant mysterious UTIs you can bet your sweet BIPPY I'd be hammering on some doors for answers and proper treatment.

hang in there honey, you'll get the answers you need, if only from sheer stubbornness and determination, mah deah !!

Sandy I so know what you talk aobut with drs...

I was up most the night with stiffness, and pain....couldnt sleep...took ibuprophen like extra amounts with food....and doesnt touch it...was up till
3am....

so today I decide to call my dr office, my pcp is hard to get into I know, but here I told her I am in pain, stiffness, that started last week with numbness...that I couldnt feel my legs...now stiffness and that my wrists and ankles are in pain...

they put me on with her nurse...the first nurse not her nurse..mentioned meds for pain...that she can give dr note about if they can get me on something...soon....then she sent me to my drs nurse...

so she says my dr is on vacation not back till the 3rd.... that I can see the her pysicians assistant...I said sure I gotta see someone quick...the first apt isnt till next friday....how quick is taht...this area sucks...

and no other drs in practice can see me sooner i guess too...

finally I called back, said hey, I couldnt sleep due to this....the first nurse mentioned how in chart it says neurontin might be next step.....and that she is leaving a note for my dr....but as you said she is out of town for while...do I have to wait a week for, ideas for pain .....

she called me back after talking the assistant....they prescribed me neurontin....I think three doses of 300mg a day....I gotta go pick it up to confirm that....when I asked her if somethign I should work up to...as isnt it like lyrica..you can feel loopy at first on it....she siad she didnt know....check with pharmacy too.....

what a joke finding good care sometimes...here I was talking about pain...that is keeping me awake...and they were gonna just wait till I am in next friday!!!!!

anyhow...this is where I am at....now kindof nervous...to get loopy feeling as I did on lyrica...lyrica didnt help with the tingling pain...ro anything...and I hope to not gain weight with the meds...anyone have experience with neurontin here..hugsssss

sorry for rambling or if this didnt make much sense..haha..sarah

Hi All,

I just read the last few pages, hope everyone is doing ok today. As usual, I love reading your updates but I've gotten somewhat behind.

Renee,

When our oldest was four years old, my Dad was visiting once, and when my son went up to him for attention, Grandpa looked at him and said, "No. Bad boy, get away now."

That made me furious. I looked at Dad and said, "Don't you EVER say that to him again!" The poor little guy was just trying to get Grandpa's attention, not doing a thing wrong.

My Dad looked at me with very wide eyes, said ok, meekly, and it never happened again. When I was a kid, that's what he'd do anytime I tried to talk during an adult conversation. I was pretty shy and awkward, maybe that's why? Anyway, I don't blame you for wanting to move out with your Mom behaving that way.

Vonn,

I'm so glad you're moved in, and you have a nice view of the lake, you lucky gal!

Sandy,

I hope Jim gets fixed up with a new doctor soon!

Kay,

81 ducklings? How cute!!!

My update:

I've had a bit more energy after some med adjustments, and maybe partly because of the Tysabri? Anyway, I'm getting more accomplished at home and I'm thrilled. It's probably why I'm MIA around here more often now. I do come and read most of the posts, even though I don't reply that often. Have a great day everyone!

Thanks you guys. I am on the verge of tears. I told this nasty doctor that I will not lose my husband to someone who can't be there for Jim. I told him this is what happened almost six years ago and I will not accept less than quality care. He remained quite for the most part and then said "I understand." RIGHT! I don't think so.

My stomach is churning and I have anxiety all over the place. I thought seeking civilian care would be different but it's not. You must remain in control at all times.

Sarah - I've been on Neurontin for about 5 years now. At 1st it made me loopy in a "had a few beers" way. It really wasn't bad. lol However, once I took that 1st dose I was hooked. I was pain free for the 1st time in a really long time. I did not gain weight. I do tell people that drinking lots of water and making sure you get plenty of protein helps with the loopy feeling. Occasionally, I get that loopy feeling and start rambling nonsense.

I did have to amp up. I did not start at the full dose right away. I now take 900 mg a day and it still is working great for me.

Sandy - I really hope that the new dr works out for you. I know you guys must be so incredibly disappointed. You had such high hopes for this dr and he let you down. You are not asking for much, just that Jim feels better. Any infection for us MSers can really do a number on us. Jim would feel a whole lot better without these infections.

Kay - Amazing!!!! I hate going to the dr. yet I know I have to in order to get refills on the prescriptions. If it weren't for that, I would do exactly what you are doing.

sandy great BIGGGG HUGSSSSSSSSSS

HUGSSSSSSSSSSSSSSS

i love you...take it easy...breath a bit..and remember you found a new dr...and we will pray that this dr is much more attentive...we love you..hugss,sarah