OT July Chit Chat [Archive] - BrainTalk Communities

Pegakafarmgirl

07-01-2009, 02:35 AM

you think this month of June went fast ??. I did,, but everything is faster then me,,:rolleyes:

how goes the battles ? we allowed to win yet ? Sure we are,;)

I am okay, nothing major happening to me,, same O ,same O,, been busy, with gardening, baling 3 fields of hay,, maybe we can slow down just a little this month,, naaahhh, what fun is that I ask,,?

Dad, { he is 90} is having shoulder replacement surgery the 5th of August, with his age, and health problems, this spooks us kids,, his choice,, the way he sees this is " its like putting a new motor in a vehicle , then junking it" made me laugh,, he still is sharp as a tack,,

so, hows your weather ? Iowa is good,, last week was hot and humid,, and next week is promising more of it,,right now,, high 70's.. ahhh,, perfect..

enjoy Independence Day..

later..."waving"

Cherie

07-01-2009, 08:25 AM

I heard on the radio yesterday that this is the coldest and wettest June on Record (we apparently broke the old record set in 1903). According to the reported, there were only 4 days of sun the entire month and rain 26 days of the month and the average temperature was 62 for the month. As they were speaking, it was raining and 68 at the radio station and sunny and 78 where I was. And we woke to a thunderstorm and enough of a downpour to have to close windows this morning.

Did way too much yesterday. I think my errands today will be local and short like to the bank and to get milk and fruit.

Took my first ramp up dose of Rebif 44 this morning. I'd been off since January to try and reset the immune system before this knock down relapse hit (the first in the 6 years since I've been on Rebif). We've decided to stop the IVIg. It helped finally wipe out the resistant UTI but was not helping the relapse resolve. Cytoxan really helped on June 5 and I get another dose tomorrow.

Stay dry and keep cool!

Oh and (from the last entry in late June OT) what is an epiretinal specialist?

BBS1951

07-01-2009, 10:31 AM

Peg, you beat me to it and got your Chit Chat July thread up before I got my Swim and Exercise Club July thread up. You farmers get up pretty early :)

Cherie, you ahve a cold rainy June. This has to be one of the hottest Junes on record in Florida, and rainy. Its climate change I guess.

Whisper

07-01-2009, 11:33 AM

June flew by here too. I hope July slows a bit. We had a cold June, no swim time for me. I was only in the pool once this year so far.

Off to NY today for a couple of days. Take in some shopping while hubby meets some clients.

Happy Canada Day Canucks...and Happy Independence Day Americans!

Lorraine:)

LaCeli

07-01-2009, 12:02 PM

Hi everybodee! It's rainy here today.
We are going to West Palm Beach later this afternoon. Just for fun and R & R. My BF belongs to a bicycle club and it's an organized ride. I don't ride too often but it's good exercise and fun, not far. I'm glad we're doing an evening ride b/c of the heat.

Thanks to those who supported my sad heart when my son moved to KS. Lo & behold, he and GF are back!

Oh boy, I hope I survive this launching business. He's 21. I was married and had him at 21. With the economy, work is scarce. I'm beginning to wonder if I'll ever see him independant. Such a different world today.

Independance, accountability.............WHEN DOES IT HAPPEN??

BBS1951

07-01-2009, 08:32 PM

Lots of kids are returning home, jobless. Its a bad economy out there. Put him to work around the house and charge him a small rent to help him feel accountable.?

Love going to WPB--- especially Loehmanns :)

We went for a brunch at The Breakers on a sunday and were big shots: didnt ask the price. We spent @$125 each or was it $150!! What a shock!

Virginia

07-01-2009, 09:32 PM

Hi to All,

Well, summer is definitely here. I guess later this month and next month will be the hotter months of the year. I wish it would rain here. Well, not 26 days out of the month, but still a good soaking rain. We were doing alright for awhile, but it is dry now and I do hate for things to start turning brown. It's been so pretty to see everything green and growing.

Peg, I can understand your concern about your Father having surgery at 90. I hope all will be well.

LaCeli, the economy is such a problem for so many now, and unless it hits you or someone close to you, I think a lot of people do not realize the stress it can cause. I do hope he is able to find something soon.

Lorraine, sounds like you plan a fun trip to NY. Stay safe and have a good time.

BBS, I had to read twice when I read the amount you spent for brunch for each of you. I would hope that it was "REAL" good.:)

Cherie, an epiretinal specialist is a Retina Specialist. Lady, an "epiretinal membrane close to the macular" is the same as a pucker. Some people stablize early on and never need surgery for this, but others continue to decline in vision and need to have the surgery. It is scarey surgery - they poke 3 small holes in the eye (whites) and work with a light they insert in one of the holes. The surgeon must be very, very capable of doing very intricate work. I have been told that if I continue to progress and have to have this that I will be mostly face down for the better part of a week. That is day and night, with short periods for a break. I am scared!:( As for what it does to the vision - if it continues to progress I will loose my center vision, which is what we read with, etc. Also, there is a lot of blurriness with my sight right now. I am a big reader, but have not read a book in 3 or 4 months. It is so uncomfortable. Enough venting - hopefully it will stabilize, if so I will try to live with the loss that I have sustained so far.

Hope we all have a good July.

Virginia

LaCeli

07-02-2009, 07:08 PM

BBS, I bet that a brunch you'll never forget! Sometimes you have to treat yourself "if only for a day".
We had a nice ride. Got rained on but had fun. Silly bunch of good ppl.

With my son, sadly, he's spoiled. Now I'm paying for it. He also lacks a very important quality: motivation.
I keep telling myself, be patient the rewards come later. :rolleyes:

Yes, Virginia, it is stressful on everybody. Thanks for your thoughts.

BBS1951

07-02-2009, 07:19 PM

No time like the present to stop spoiling him. Tell him in two weeks you will start charging him rent. Case closed!

I recall telling my kids, "if you decide to move back home, we'd love to see you. But we will charge you rent". The kids said, "Then why would we move back home". and I thought, "Exactly".

Its a brunch we wont ever ever forget. It was delicious and very elegant; it was our anniversary, so I guess we can chalk it up to celebrating :)

Pegakafarmgirl

07-02-2009, 07:23 PM

Laurie.. hang in there Mom,, my 2 sons. are too motivated.. Josh has his own construction company.. Tommy is a bodyguard for the 4 star generals.., but they still listen to me,,not agreeing but they listen,, and they do pay attention to what their Dad tells them,, amazing .. after their troubled teen yrs.. they finally are growing up,,:confused:

so LaCeli,, hang in there tough.. let him make his own way,,he will figure it out,,:rolleyes:

Cherie

07-02-2009, 09:12 PM

We started charging rent on the third bounce back ($100/month for room, utilities and food) and it was the final bounce. Lasted about 6 months then she was gone for good...well, not gone, but not living in the house and coming and going at all hours. That was another clause in the "rental agreement"....she would be in by midnight or call before 10 to say where she was and why she would not be home. And no boys upstairs in her room EVER. And friends sleeping over only if arranged in advance with us. Oh...and as long as she was living under our roof and paying rent (small) she would either come to church with us or find a place of her own to worship each week. No free rides here. She tells us now (after 7 years of marriage and 2 children) that we were not hard enough on her.

He will appreciate the rules and guidelines you set up and please don't be too lenient.

Lady

07-02-2009, 09:56 PM

Virginia, thanks for the information. I looked it up on the link I have gone to many times for information on my posterior vitreous detachment.

They thought it was a retinal detachment at first, then it was decided it is a vitreous detachment. It has not pulled off anything maybe a slight tear.

I have to have it watched often by my eye doctor in case it pulls and tears more of the retina. I do have a fine curtain effect in that eye. No cataracts, just like looking through a fine curtain on a window.

My vision hasn't changed, but that curtain effect annoys the heck out of me. He said to ignore it unless it gets worse, then come in right away. He said if I ignore it, the brain will eventually not see it. Hmm

I read about your pucker, and the macular hole. If you want the link let me know. It is scary, mine too. All delicate eye surgery. :(

LaCeli, I told you they keep coming back. (kids) Gotta lov um.:) Just make sure he and his girlfriend get jobs ASAP. Anything to pay their way.

Maybe not rent to you unless you want that for food money, but they need money for a car/s, gas, ins., clothes, pocket money, etc. Btw, lack of money is a good motivator for him and her. "Tough Love" Good luck.

I just noticed the other replies, we all seem to agree.:)
Lady

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LaCeli

07-02-2009, 10:09 PM

Yeah, I know, thanks guys. It is partially my fault too, as I am a real softie (he's an only).

I'm trying hard to be tough b/c I know I'm not doing him any favors. Thankfully, my BF is very supportive. It'll be OK. I was being kind of figurative asking when do they grow up?

Every once in a while he'll do something so adult, it shocks me. Then we lose paces. But enuf of that.

Gary

07-03-2009, 12:53 PM

LaCeli it will all work out sometimes I guess you have to close your eyes and push them out of the nest :) We offered to our daughter that while she was going to school she could move home as we have a finished basement that is empty and I could knock together a couple of extra walls for a bedroom. She said she does ok and she likes her house.

Son is full time student and lives in a frat. We told him that as long as he was a full time student he could come home in the summer. For free. But I told him I was not paying for beer or girls.

Lady it is scary to have eye problems. I am keeping my fingers crossed.

It has been hot in the upper 90's and yesterday I thought that I was in the midwest as the humidity was high and it was cloudy I thought that we would get thunderstorms and rain but just got more heat.

I need to cut the lawn if it gets any higher I will need to get the swather and the baler out. I wont say that it is getting high but I took 10 steps off the porch and it took 20 minutes to find my way back!!!!

Be healthy everybody

dgbranst

07-03-2009, 01:41 PM

I had an episode on Monday where my sight went very blurry. So much I couldn't see the numbers on the phone. Then I fell hard on my back and could not roll over. Finally got on my knees and held onto a chair and my cane to get up but it took numerous tries. I walked the wall with my cane almost falling at every step. Got my walker and could barely walk with that to the living room to sit in my chair and use the phone. It took 15 tries to get ahold of Dave. Couldn't see the numbers. Got confused on the off and talk buttons. Got ahold of him and he took me to the emergency room where they gave me steroids, blood tests and chest x-ray. K+ came back 2.8. almost to dangerous level the doc said.

Had VEP on Thurs and saw neurologist. She said not MS because of acuteness of it. She is ruling out a small stroke. So next week is filled with MRA, echocardiogram and utltra sound on neck arteries.

Kind of scary and I'll be glad if I can get this all done before next Thurs when I see neuro again. She is putting a rush on the MRA.

Kathy

LaCeli

07-03-2009, 01:54 PM

Wow Kathy, keep us posted. I'll keep you in my thoughts and prayers.

Lady

07-03-2009, 04:40 PM

Kathy that is awful.
Low K can cause so many problems. My DH passed out at work, got so dizzy first, then weak and out cold. He is a healthy guy, but since he works in the hospital, they took all tests on him. He had almost no K (Potassium) at all. He sweats a lot, works out too.

But his normal diet didn't not include any Potassium in it. Salt and potassium are our electrolytes. They must be kept in balance to one another. That is why I stress so much for people to watch their potassium level. Mostly, because he had so many tests, and the problem was all from lack of Potassium.

Hospital big bag of steroids, increase the salt level in the body and decrease the potassium. That is why you can have tons of problems when taking steroids. Must eat potassium enriched foods. Or take a RX supplement if the doctor orders it.

I always increase my potassium before and after steroids. Even daily I watch what I eat. I use no salt products to keep my blood pressure down and normal. It rises with even a slice of pizza.

BTW, I get a tiny steroid ball that I hook up myself at home. A nurse just comes to put in the Heploc. Then I dose myself. It has very little water and saline (salt) in this tiny ball with a pump.

You can put the ball in your pocket and walk around the house for an hour until it's done. Or just watch TV.

Someone on here told me about this years ago. It is fantastic. Thank you cw. No hospital visits or costs. Just a nurse drops off the IVSM balls and kit to put in your refrigerator, you connect them yourself after she inserts the Heploc that she changes every two to three days.

Or someone can connect you to them, or the nurse can come daily if your hands have issues.

My potassium never goes down with this new pump ball of steroids. It works laying down or it even pumps upward if in your pants pocket. Shrinks to nothing when empty.

Disconnect and toss it, and use another one tomorrow. All labeled, made up as doctor ordered (mgs) at the special Pharmacy, the infusion home nurse gets them for you. Very cheap cost and ins pays because no hospital involved.

Kathy, I hope your only problem is lacking potassium, not a stroke. If it is an acute relapse, ask for the home nurse and the tiny ball of steroids. It's the size of a small tennis ball. That's if they want you to continue with the steroids.

My relapses were like what you experienced, I call them the ones from heck, when they go acute and mobility is affected.

I hope some of this information helps you or some other people on here.

I hope you didn't hurt yourself when you fell and that you are okay, no stroke. Let us know, when you can, how you are feeling and update us. Sending prayers your way,
Lady

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Cherie

07-04-2009, 11:20 AM

Kathy,
You are having more problems than I feel goodabout. I feel a bit frustrated that you are not being well managed.

They tried REALLY hard in April and in early June and again a little over a week ago to get me to go on IVSM again to knock down this inflammation. Cytoxan so far is far more tolerable than the IVSM and seems to be less hard on my system than IVIg. However, I have consistent problems with High blood pressure now. Last night it was in the 170/100 range for more than 12hours. This morning 112/80. I think I was up due to Lasix every 45 minutes all night long.

Raining here off and on today but it is warm and gentle. Water fights on the circle and basketball in the parking lot andbabies being swung by parents or older children continues. Peopleare swimming in the lake. David is off on a bike ride. I'm just kicking back and listening to the sounds of families at play. Did get the debris of winter and some massive spider webs and one HUGE spider and nest cleared But David helped with that. He's also in the process of rebuilding the latch on the guest bathroom door with wood putty and shims.

My balance and cognition are in thepits at the moment but I have faith that with the return to Rebif and the Cytoxan support, I will come back to my baseline. If not, I'll learn to deal with the new normal. And I wonder now, if I had gotten any of the part time jobs I tried to get in February, how Iwould be managing. There seems to be a master plan in all of this.

Happy 4th to all!

BBS1951

07-04-2009, 06:28 PM

Wow, Kathy, how scary for you. I hope its not a stroke.

Cherie, watch that bp. That must be awful for you. I too am hoping that the REbif works miracles like it did for you a lont time ago when youswitched over to REbif.

DH took me to the movies to see The Proposal with Sandra Bullock. Its a very sweet romantic comedy and I recommend it. She looks terrific of course. And those high high heels she wears (a thing of the past for most of us with MS-- myself included; flats only for me).

Lady

07-04-2009, 10:28 PM

HAPPY FOURTH OF JULY--INDEPENDENCE DAY

Have a safe holiday everyone.
Lady

.

Cherie

07-05-2009, 02:42 PM

Dave took off to climb Mooselauck about 4 hours ago. He may kayak Long Pond before coming back. It was just too cool for me to join him on the water and to strenuous to think about climbing with him. It's a day with no energy to spare but lovely cool dry air and sunshine. I made the most delicious soup from leftovers and had some of that for lunch.

BP is still a concern. Atenolol and Lasix are not keeping it where it needs to be (although it will come back to that range occasionally). Can't tell too much till I'm past this effect of Cytoxan but I really think it's the brain stem lesions that were not noticed on previous films. And I doubt much bP med is going to affect that.

MargaritaChic

07-06-2009, 09:48 PM

Just stopping in to say a quick hello! Lots going on with me recently.

My job has changed drastically (no complaints though because I am happy I still have one). I now have 9 employees working for me. I used to have none! That is a big change. No extra money. Just alot more work. I am trying to deal with the stress through meditation.

I have been ill recently. Turns out I had a bladder infection and gallstones. They removed my gallbladder on Thursday. I am home for the next week recovering.

Fun fun!

I hope you are all doing well! Talk to you soon.

Virginia

07-06-2009, 09:50 PM

Hope all of you had a great 4th of July and a nice week-end.

I went to my younger brother's for the traditional hamburgers and hotdogs, along with brownies and homemade peach ice cream. It was so good.

The weather here has been most co-operative since about last Thursday. Temperatures not bad and very low humidity. It was a real help, however that is due to change by the week-end.

I got myself into a little bit of a jam. While at my brothers, I told my sister-in-law I would water her plants while they are away next week (this is when it is supposed to be hot again). I thought she just had plants on the back screen porch and a few around. Well, turns out as she was showing me what to do she has everything all over. They live on a golf course, and in among the shrubbery she has planted different kinds of tomatoes, cucumbers, herbs and all kind of things. She has a hose she drags all around back watering everything. Then when she got through showing me all that, I was getting anxious, but still telling myself I could handle it. Then she said I keep another hose in the front yard and she started telling me where all the plants that needed watering were around front.:) When my brother realized what we were outside doing he kept saying "she can't do that", but by that time I didn't want to let her down, so I said I would manage. Now I am praying for rain all next week. I would hate for her to find her plants and all her stuff dead when she gets back.:) I will try to get a friend to help. It was funny the way it happened. I had no idea she had all that stuff. I just thought she had some pretty flowers.

Kathy, that was a scarey episode you had. Come back on and let us know how you are and what's going on.

Cherie, hope your balance and BP are returning to normal. I do believe that when the Rebif has a chance you will stabalize again.

Gary, Lady, BBS, LaCeli, Peg and all the rest, hope you all are doing well. Okay, as well as any of us can do at this point. I think most of us have worse times than others and some time that is hopefully better.

By the way, I don't see much of Ann it seems, now that she has gone on a diet and is not giving us as much chocolate. Hope she is also well.

Virginia

Lady

07-06-2009, 11:08 PM

MC, Congratulations on the new but harder job at work. I hope you are feeling better after your surgery, for your Gallbladder removal, and the bladder infection. Yikes! I guess they did the Laparoscopic surgery as they do that one nowadays, instead of the big incision.

Feel better and nice to see you back on here, we missed you. Heal well. :)

Virginia, what a chore you got yourself into. I hope you get many friends to help water the plants and flowers with you for your Sister in Law. You can wish for rain, but I had enough. Our weather in more like a wet May than July.

BBS I love the movies but DH hates them. What do they say about opposites attracting, well that's us.

Kathy, how are you doing? I hope you are okay.

Cherie, I was on three BP meds years ago, late 90's, it did nothing. I ended up stopping them, since they did not help. Now my blood pressure will go up a little, then down very, very low. Too unstable in these last few years, but not controllable by meds.

I had to stop the water pill too. I was getting too dehydrated for nothing, and my kidney areas would hurt. I think it is the autonomic nervous system, which controls this. In my case anyway.

I hope you get yours under control and some energy back. What does the doctor who gives you the BP meds think? I went to a kidney/BP specialist.

He sent me for every test, or scan possible, all tests but without being too invasion with a kidney biopsy, which he said he would have done next. But it went down to normal or below. Like my temperature does. Crazy body. :confused:

I just don't eat salt products and I make my own foods. Restaurants are hard because they use too much salt and other products I am allergic to in their cooking prep. Ever check out the salt in a can of soup vs. homemade like yours?

Ann, no chocolate for us? Give up your stash. Dark semi-sweet for me.:)

Hi everyone else. I hope you all had a great weekend and rested, or joined in the activities, if you were able to.

I had a lazy weekend. Did some stores, great sales at the supermarket, and had to take a nap. Food shopping does me in. :(
Lady

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stillstANNding

07-07-2009, 01:27 PM

Hi Gang,

Virginia, good luck with the plants. I am in the soggy NE and will do my best to send rain your way.

MarraritaChic, take time to heal. You're not at work so try not to ruin these days thinking about it. Meditation is a good idea, always:)

Lady, I was reading about your burning legs In another thread. I take a cool bath with peppermint soap. I have convinced my self that it helps. Yah, it may be all in my head but so are the lesions.

Cherie, I am glad you are enjoying the condo and keeping on top of the hypertension.

Hello Gary, Peg, Kathy, Lorraine, Paj, Howie (the original) and all that I can not remember

"Bad Boys, Bad Boys, what'cha gonna do?" One of my 3 cats, Kofi, peed on the new, 10 foot leather couch even as I saw him get into position and warned him. I think it was too late at that point. Now, he is comfy on the old couch. Darn. I got it off but will he do it again? I don't know if this means I have to keep the couch or if it means it must go back.??? It came with a 90 day return policy for a full refund. Bad cat, Bad cat. It is my first adult couch. The other is a very nice futon sofa.

OK, so by popular demand, today's chocolate is dark. Help yourself. The ones on the right have nuts in them (almonds).;)
ANN

Gary

07-08-2009, 12:14 PM

We are having a lull in the summer heat only supposed to get to 78 today.Of course 97 on Saturday.

I fell and banged my knee it is still swollen and walking off center is messing with other muscles and causing some awful spasms. Hate to go to the dr. again but might have to as it is starting to interfere with my beauty rest.

Virginia nothing wrong with just saying I cant do all of this (yeah easy to say) does it all need to be watered every day ? I have mine broken down to do in sections. And of course I try to do it in the cool part of the day.

Lady I had to post about the water pill. Lots of folks do not realize that they can mess with electrolyte levels even a low dose. I do have to take a couple of them but am careful of any side effects as even being slightly dehydrating will push my kidneys over the edge.

Cherie glad its nice at the condo. Some R&R is just what you need. The nice thing about going away for a couple of days is not worrying about home you cant do anything about it!

MC had the same thing a couple of years ago had my gallbladder out and was home that night.

Ann good to see you around. Peppermint schnapps ? Oh soap........ Ha ha Be sure to let me know when you are serving up milk chocolate mmm. I know extra insulin but its worth it. Or Carmel or butterscotch or See's candy used to have one called Opera Creme I could make a meal out of them.

Be healthy everybody,

dgbranst

07-08-2009, 01:57 PM

I had a echocardiogram yesterday. It may not be read by tomorrow before I see the neuro. It was to see if I may have an arithmia because I am down to 100 pounds, a 40 pound drop since Jan. I also had an ultra sound of my caratids in my neck. The tech said they looked good. I have a MRA of the vessels in my head today at 2pm to see if I had a sroke. I hope not. I cannot safely be on blood thinners because of von Willebrands, a bleeding disorder.

Kathy

Cherie

07-08-2009, 03:40 PM

Kathy,
I'm concerned and glad they are looking for the problem.

Gary,
Ouch! Is this the knee they want to replace?

Lady,
I think as you are thinking...that BP meds might be causing side effects but not acting on the elevations. The two days I did not get to my atenolol before the infusion nurse came were the lowest my BP has been in ages. I have three new brain stem lesions which I suspect are somehow involved. Next PCP appointment is 7/31. Maybe I should try holding the Atenolol for a few days and see if things gradually normalize. It's still running about 140/86 or higher whether or not I add the Lasix. And it does dehydrate me and cause my kidneys to ache. Thank you for spelling this out. It helps me to better analyze from outside of dead center.

I'm back at full dose Rebif with no problem. Of course my PCP thinks that is contributing to the BP being elevated. Woke with good energy this morning which has lasted. Am not pushing the envelope but my mind is clearer for book work and my vision has improved so I can see the computer screen without glasses and can read some without a headache. Will get the post-cytoxan bloodwork done Monday then see the neurologist next Thursday. He wants to do the Cytoxan monthly in addition to the Rebif but if it lowers my white count for three out of every 4 weeks to the point where I can't go to church or Rotary or cookouts...I'll really have to weigh the benefit.

We came home a day earlier than planned due to heavy rain in Northern NH. It took 6 and a half hours to drive the 212 miles home yesterday the rain and hail were so heavy. I heard on the radio that parts of southern NH and northern MA got up to 8" of rain in a 2 hour period while we were driving in it. Today is sunny and 72. Can't ask for nicer than that!

BBS1951

07-08-2009, 05:12 PM

Wow, this thread is so popular right now, It would take all night to answer everyone's posts. Well, just know That I did read each and everyone of the posts!

I did want to tell MC that I hope she feels better from the gall bladder op--that is becoming a popular surgery!

And, I'm worried about Kathy, especially so much weight loss.

And, VIrginia, reading your post, I was thinking about the funny scene in 27 Dresses where the guy is in the bar with Katherine Heigel, who has trouble saying No, and how he rehearsed it with her. It was very cute :)

LaCeli

07-08-2009, 05:43 PM

I hear ya BBC. I was thinking when I hit the reply button, I hope I remember all the responses & ppl. :)
MC, congrats on the new job. Wishing you a speedy recovery.

Sorry about the knee Gary. (Peppermint schnapps is real good for that :D)
I love See's candy. MMmmmmmmmmmmmm.

Chocolate.......... Oh, yes dark. I love dark chocolate. Thanks Ann.

Cherie, glad your getting some R & R.

Oh boy Virginia. What do they say? "She seen you coming". LOL - Pray for rain and just do your best. I think breaking it up is a good idea. Not so much all at once. Good luck.

Kathy, that sounds like alot of weight loss. :( Hope you feel better.

Virginia

07-08-2009, 08:45 PM

Well, everyone seems to be rolling along - some good and some not so good!

Gary, thought you promised to stop this falling. This is not fun is it? Also, going to the Doctor does get mightly old.

MC, hope you are over the surgery now. They say it goes so fast with gallbladder surgery now. Maybe you will have a few days just to feel good before going back to your new (and harder) job.

Kathy, we're getting concerned - 100 lbs sounds awfully small. I hope they are able to find the problem soon and correct it. Please try not to loose any more weight.

Lady, I try to do a lot of my cooking also to avoid sodium and other things, but I find it is hard with me because I have to go out to have a social life since I live alone. It is difficult sometime.

Cherie, glad you are back up to 44mcg Rebif. However, when I just read your post it reminded me that mine is sitting down on the kitchen counter where I put it at five this evening and forgot to take it. So as soon as I finish this I will have to get to it.

Hi LaCeli, Peg and everyone and thanks Ann for the delicious dark chocolate.

Well, I do have to water the plants every night. At least if I can. I really don't want her to come back and find them dead.:eek: I asked if she did that every night and she said yes. We have had a little cooler weather lately and I thought that might help, but it is due to turn hot again this week-end. I start this little project Sunday night. We'll see how I do. By the way, I would not do this for my self.

Virginia

stillstANNding

07-09-2009, 01:29 PM

Oh, Virginia! The, "I would not do this for myself" is a big, big flag. You need to go see the 7 dresses movie that BBS mentioned and learn to say "no." So, I guess you will just have to do it in the coolest part of the day and break it up. My mother did not plant this year just because lugging that big hose around was too much.

Kathy, please let us know how you are. That is a worrisome weight loss. Prayers said.

PiazzaGuy is in Tampa. I declined to go (business trip). As I recall, Tampa has no beach but Clearwater is up the coast a bit. PG reports it is 80 with killer humidity. So, I am on my own for a while.

Stay cool all,
ANN

Cherie

07-09-2009, 05:01 PM

Delightful weather here all day today. Partly sunny, light breeze and temps between 68 and 72. I've had a day and a half of real improvement in energy level and vision and balance but this is also the point where my blood counts nosedive so I can't go out and share the energy. Heather is bringing the boys over tomorrow for a couple of hours while she gets a massage. She assures me both are quite healthy. I miss them. She's no longer working just down the street as the business sold so she's the other side of the bay every day and I am not seeing the boys two or three times a week anymore.

Gary

07-10-2009, 04:30 PM

Weather turned hot again as predicted. So I am hiding in the house. Not that I dont have a whole list of stuff to do outside.

Went to my PCP today thought that he might change his mind about anti inflammatory drugs for my knee. Yeah this is the one that they can only replace as its a mess. Sigh. I planned to postpone the inevitable as long as possible. He did say to give it another week or so before making a decision.

The concern is, as always, its effect on the good ole MS. Injury, illness , stress blah blah blah. I know that the surgery will cause a relapse as it always does. So I will behave my self and see what happens. And I always behave myself...................

I even gave thought to steroid shots PCP is against them for 2 reasons 1. greater chance of infection in an injured joint 2. I have had so much steroids that I am lucky that I have any solid bones left!! At least we agree on not usuing them.

Have some extra choclate everyone and tonight we can sample some beer that is ready to be tasted hmmmmm homemade pale lager. I cant stand the taste of heavy dark brews although they are much easier to do at home. Brats and beer for dinner. Howie what time are you going to be over?

Be careful out there among 'em everybody,

Pegakafarmgirl

07-11-2009, 08:52 AM

crazy midwest weather pattern, first, chilly, then hot enough to fry a egg on a sidewalk, then the rains come, seems every other day, a thunderstorm comes,,

oh hi,, I am just whineing out loud,, today is my dads birthday, he is 91,, bless his heart,, we had him over to the 4th of july picnic,, they played cards till 10 pm,, then some unknown person tore the side mirror off my blazer,, spendy,,no one is oweing up to this,, we bought a new mirror,still , its the idea of it,, they broke it,, we should have been told,,

Shasta is fine.. she is growing in leaps and bounds,,she is my dog,, I am out with her everyday,,

neuro visit,this Monday,, I bet he will push me to solumedrol,, things got bad,, fast,,,,I'll be okay,,

later,,,"waving"

Cherie

07-11-2009, 09:25 AM

Peg,
YOu're brave adding Shasta to the mix. I had more falls and mild injuries with Bessie here and fosters coming in and out. When she died, I just laid down the law of no more dogs. I can't afford the potential long term injuries. But , as I look at it a different way, the dogs (and horses) keep you active...force you to move...and therefore may be a therapy aid.

Are you still on Tysabri or did you go to Novantrone? Some docs are doing the Novantrone once a month for the first three months to try and calm the inflammation then after that every three months. You might ask him about that. Also...they've been pushing Solumedrol with me things have gotten so bad over the past few months but I said absolutely no. We tried IVIg and now Cytoxan. Cytoxan seems to have helped more than either IVIg or Solumedrol. Ask about it.

Sunny, breezy and not quite 70 here this morning. Off to the pool for 40+ minutes of exercise.

Oh, Gary,
Watch that knee. I know you have to have crutches or a walker around (pain of all pains) but if you want this to heal without surgery, you may have to resort to more than just a riding mower to keep you from stressing it.

BBS1951

07-11-2009, 10:54 AM

Peg, whats' going on with you?

Last night I watched Benjamin Buttons. Its an interesting movie, sometimes very moving as well.

BBS1951

07-12-2009, 01:02 PM

I am making home made pizza today. I got a very simple recipe from Fine Cooking for the dough part. So easy. LEt me know if you want it. Its my fave cooking magazine.

My dough is sitting right now for 45 minutes, and then on to putting on the toppings. It should be a nice change of pace for supper :)

LaCeli

07-12-2009, 01:17 PM

BBS, I'm coming for the pizza. Forget the recipe.
You know, I could be there before the pizza leaves the oven.

LOL. I love homemade pizza. So, real pizza dough with yeast and stuff huh?
I imagine it'll be great. I'm settling for pot roast. :)

LaCeli

07-12-2009, 01:21 PM

Peg, my thoughts and prayers are with you.

Cherie

07-12-2009, 01:44 PM

Not seeing much benefit with current therapy. Going back on Rebif was no problem and I was back to full dose by July 1. Stopped IVIg because of cost and lack of perceived benefit ($2700/dose and I had 10 doses). Cytoxan is being given at less than recommended dosing and after speaking with an MS nurse friend who is an infusion nurse, my white counts are not getting low enough on the Cytoxan to be of long term benefit. And it seems to be raising my BP and causing irregular heart rate. Neuro is on vacation (back Thursday when I have an appointment with him) and PCP thinks neuro needs to manage this as he is convinced it is a side effect of the Cytoxan. PCP also disagrees with dose of Cytoxan.

So...I have to stiffen my spine and Advocate for myself again on Thursday when I see the neuro. My vision and balance and energy improved for a day and a half a week after the first infusion and three days the week after the second infusion. But the BP and heart irregularities are adding to the fatigue and cognitive issues and the vision and balance are not significantly improved.

I've spoken with a couple of nurses who've done Novantrone but it is questionable whether or not I could get it due to what is happening with BP and heart irregularities with the Cytoxan. Not sure what else to do. Still very leery about Tysabri personally and neuro will not use it.

I'm open to suggestions.

78 and sunny here today. A little warm and muggy for comfort.

BBS1951

07-12-2009, 03:23 PM

It does sound like you are between a rock and a hard place.

LDN? It probably cannot hurt you. I dont know if it will help.

Are you on any other meds that could be contributing to your cardiac problems?

Cherie

07-12-2009, 03:36 PM

Yes, No, No

Ikoiko

07-12-2009, 03:45 PM

Cherie, do you see an MS specialist? They know all the ins and outs of each tx.

Cherie

07-12-2009, 03:53 PM

Cherie, do you see an MS specialist? They know all the ins and outs of each tx.

Yes. And I am an MS Certified Nurse. I think sometimes that may be more of a hindrance than a help because the doc tends to take his lead from me. I am far more current on research as he admits he doesn't have a lot of time to keep up on the almost daily stuff coming out of the journals whereas I review them almost daily.

Ikoiko

07-12-2009, 05:32 PM

If I ever thought an MS nurse knew more about MS than my MS neuro, I'ld be looking for a new neuro!!!

Cherie

07-12-2009, 05:47 PM

That seems a very unpleasant comeback for a casual forum such as this where we all know each other and many have become friends. I can forgive this one comment as stated not knowing that.

Ikoiko

07-12-2009, 06:08 PM

I'm just saying, I think you need a more informed neuro.

BBS1951

07-12-2009, 06:11 PM

Maybe, but I think there are several people here that are more informed than most MS specialists.
The docs just do not have the time to peruse the new research that is constantly coming out... I might not know as much on the cellular level of MS as my neuro, but I think I know alot that he does not know--such as that esoteric study that showed that Prozac had a beneficial effect on MS, lowering the lesion load

Cherie

07-12-2009, 06:21 PM

I'm just saying, I think you need a more informed neuro.

He is learning...just like the rest of us. But he has been solely in MS research and treatment for 35 years now. And I keep in touch with several other MS neuros and , when necessary, take their input to mine and generally he will put into practice what we have agreed might be the right course of treatment. And he is the Director of the MS center where I am treated and has strongly relied on me to pass on information as it becomes available. That is the role of the MS Certified nurse...to teach health care professionals (and patients) how to manage and treat the illness and various symptoms that come with it.

I come here to share this sort of thing because it is one of the few places I can be just a person and have an occasional whine and know that folks understand what I am saying.

Gary

07-12-2009, 08:46 PM

I had a P.A.-C that was one of the most knowledgeable medical professorial people that I ever had to treat me. I know a few certified diabetic educators that are clueless about type 1 diabetes.

To be completely honest it has been my experience that many nurses are as knowledgeable or even more so than many doctors. My PCP has said that he would never argue with the nurses in the critical care units as they know better than anybody causes and effects of patient care.

One more thought I have a daughter that is a CCU nurse and a son who is a med student my daughter has always stated that all MD's should be required to serve as a RN to see how the real world works. Yeah Christmas dinner at our house can get pretty lively!!

My wife is spending a couple days at her folks they are having a quilting party ha ha I feel sorry for my FIL. So its party time at my house.

We had cloudy weather it was in the 80's and now thunderstorms a little rain would be ok with me.

I am bumping along. I am now trying some heat on my sore knee. I think that this is a good reason to buy a hot tub. I wonder if Humana would foot the bill?

BBS how is the garden? I have TONS of tomatoes but none ripe yet. I had a lot of old carrot seed and since it was expired by 3 or 4 years I planted all of it. If anyone needs carrots stop by as it ALL GREW!

Peg I am thinking good thoughts and I am sure that this is a minor bump in the road.

Cherie "sigh" I would be glad to give you some magic MS medicine if I found one that worked.Please be careful with this combo of high blood pressure, high blood sugar and heart beat irregularities. Need I say more? Dont make me come out there. And you have my number if you need it.

Be healthy everybody.