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Taffy
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I can say my headache is easing up. I appreciate you asking. How are you doing, still busy? Doing what? |
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yeah, beaches on the Wa/Or coast are just so much fun! Cold, foggy, smelly...but worst of all is those idiots who think they are made for drag racing! I just hate that! Hmmm....how are the tides Taffy? Going to get some razor clams????? are ya are ya huh huh huh??????? FG loves razor clams, even more than chocolate! yummy....:hug: Have fun with son! |
Hi everyone!
Family time is precious no matter where it's spent -- smelly beaches included! Have a great visit. It's 5:30 am ET so guess I'm the first to check in today (Thursday). Actually have been feeling half-way human lately. I think having that ramp built so I can get outside was the best use of money that I've done in a long time. It just picks up the spirits to get out, talk to some neighbors, and feel part of the world! They're still trying to get my Coumadin level regulated. Monday it was just about right so they're coming again today for some more blood! Certainly don't want a heart attack or stroke if it can be avoided. Hope you're all having the best day you can. Hugs......... |
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Well, Pat, we had a nice visit but I wasn't feeling very well all day and I'm sure I'm not the only one who noticed it. I was a little disappointed in general, I was filled with great youth memories and so was Corrine, so we probably went in with too many expectations. It seemed a lot more commercial to us and there were very few living historians at work. We never did find the stone-oven bakery where they used to make those Frisbee-sized ginger/mollasses cookies. ah well, youth. It's still worth seeing and spending a day in the village though, and I'll still recommend it to anyone who has never done it. We did lunch at the Eagle Tavern and that was quite fun, my friend's husband had never seen anything like that, so he was impressed with the historical language and traditions. I've got to get that boy to Williamsburg, it would blow his mind. I'm overtired today, 3 days' worth of IVSM is doing a number on me and I'm unusually hyper-emotional. bleah. |
Looks like everyone is doing okay, so good.
I'll be napping a lot. |
Complaining today
For me, I am feeling bad. Think a flare up has started/continued. The headache is easing up. By the end of a day of being upright, it is pounding.
Last night I was watching tv (what a surprise...not). I got this buzzing between my left eye and temple. Then a wave of vertigo started. Wow :eek: what strange sensation. It did ease up. I've felt dizzy and nauseous since Tuesday. This morning my left eye is burning, if that is possible. :confused: Still very dizzy. Change of direction kills me. Have to take SO to hospital for another block (had one Tues). He has RSD and gets each leg worked on every six weeks. I have to go to drive him home. Enough whining. I have to put on my big girl panties, now, and deal with life. But when I get home, I'm going back to bed. Approx. 5-1/2 hours from now. |
Well, crappy is right, Beth. I'm sorry that you don't feel well. I hope it isn't a flare.
I blame the weather for everything I feel. My Sinus headache came back yesterday and more aches and pains. It's the weather.....I don't know what it's doing but it's doing it to MEEEEEE!! When you get back home, go to bed and stay there until the weather changes for the better..:D :hug: |
Ewwwe, Beth, that seriously bites. bleah. I'm sorry you're getting into it again, the demon must die!
Sal, the humidity is 200,000% here and even my head feels heavy. I don't typically have summer colds but I'm starting to wonder. I am feeling so whipped again today, but yesterday was brutal and it was to be expected. I have made a major decision and it is helping me feel a little more peaceful. I have decided to fly to the PacNW in October instead of drive it. This is a huge letdown in several ways, but I think it's the best decision. I think I'll still drive out to Yellowstone, but only that far. That will cut about 7500 miles and a couple weeks off the trip. I'm kind of sad because I know that I can do it, but for the first time in my life, I don't feel 100% confident and this is new & disturbing for me. I have also been emotionally shipwrecked about seeing a particular friend who was going to visit me here in MI. Sadly, she can't do it because too much is going on, so I will go to her for a week in August. I want to fish with my friend again. So you all will forgive me for having been completely immersed in my private hell while I seriously evaluate my priorities. Please! Hoping to sleep better tonight! |
Howdy Folks!
I had my third infusion last Thursday morning. I truly believe that Tysabri is now doing it's magic on me!! Let me lay it out for you and you will understand: I worked all night last Wed. night, 8 p- 6 a. Got out of work, went to the grocery store after stopping for coffee. Did my grocery shopping 7-7:45. Went to the infusion center and endured the 4 tries for a vein ( I have garden hoses for chrissakes!) Demanded a phlebotomist come and do it if they missed again, finally sunk it on the fifth try! Did the infusion. What was supposed to be 8 a.- 10 a. or so ended up being 11:30. Went home, 20 mile drive, packed the car, packed coolers, packed camping gear, packed clothes, packed the man, and set out for a bluegrass festival in NY, a 6 hour or so drive. Leave home at 2 p. Got about an hour away, the man realizes he has left his wallet and his insulin behind.:mad: :mad: Turn around and go home. Decide after a small disagreement with forgetful one that I am sleeping for a few hours before I try to drive again. Wake up at 10 p, get back in car and drive to festival. Raining buckets and not allowed to drive to camping area until rain stops. Finally get up hill at 12 pm and set up tent and camp. Forgetful man has never camped before and has no idea what to do. Set up camp on my own while he watches and whines about every thing I am doing wrong.:mad: :mad: Leave him at campsite and go to show with my chair, cooler, rum, coke, ice, snacks and umbrella. 45 degree uphill climb to natural ampitheater where show is. Actually make it up hill and set up chair, cooler, umbrella, make a huge drink and sit down and drink and sing and laugh for the next 10 hours. Ignore said man when he comes and joins me apologizing. Stumble down hill to campsite at end of day's show and collapse. Airbed develops leak. Wake up and pump bed back up after rolling man to floor and laughing maniacally when he rolls out tent door. Leave him out there and go back to sleep. Wake up in morning, hung over and aching. Drink 4 cans of cheap grape soda and start day all over. Repeat this X 3 days. See a lot of people I haven't seen in years. No one mentions MS and neither do I. Have a great time despite all the hassles. Swear to do it again next year. Drive home on Sunday night. Do all the driving because the man is "tired" Get home after 1 am. Note that ankles are like stumps with swelling from walking, driving, whatever. Ache all over, head to toe. Next day, unload car, do laundry, wash all dishes and go back to work from 8p-6a. Check schedule at work and find that 3 months ago I signed up for 4 OT shifts in addition to my reg shifts. Now working until next Thursday when I go ON VACATION for 20 days. I am not sure I can take how good Tysabri is working!! :eek: |
Awesome, RW! Ya' showoff!
LOL! Time for a new camping buddy?? Seriously, it's so cool to hear the success stories of a med that's doing its stuff. I got pooped just reading all that activity, so I know you must be feeling pretty darned good! It does my heart well to hear it.:) |
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You, on the other hand sound like you are having a go of it, eh? The steroids will always suck! Rest, relax, stay cool, and hydrate! Maybe after they kick in you will be able to reconsider that drive out west. |
Wow RW
I was exhausted just reading your post. So glad to hear a positive med is down the pipeline. I'm glad you enjoyed yourself, sounded like alot of fun.
You will get through the OT shifts and have a teriffic vacation away from work. Take care. :hug: |
Feeling any better, Beth?
Sal, your head cold letting up? Taff? ugh. Wow. I take a few extra naps and the whole team falls apart. Sheesh. |
Amn
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I appreciate you asking, I am fine. My eye is still burning and stabbing a bit, but I can see out of it, that's good. I guess it is ON. Maybe the headache was just a precursor? I'm glad you are caught up on your rest. Missed you. :hug: |
Geez, girl, get thine eyes to thy neuro. Mine told me never to wait with the ON as it could do permanent damage to my vision. And, if I have not vision, what am I?
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AMN - may I call you Cindy?
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My old doc went cash only, no insurance. A mere $140 or more, cash only to walk in the door. Medicare pays docs almost nothing in this state. :Soapbox: Jumping down off soapbox, Oops :thud: I hate when I catch the floor with my face. :hug: |
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Someone else I know just got informed by her neuro that he was going cash only! No insurance accepted whatsoever. What's that all about? It seems like it's a way of saying that they're finished with MS patients or something. Well, Beth, the way I see it, nothing will be wrong with at least making the new neuro aware of this. Aug. 1 is coming right up, so you can decide what's best. I'm just afraid of losing my vision again, twice was enough and I was very blessed to get it back. For the record, I NEVER call my neuro and tell her what I think it is, I only tell her about the symptoms. I'm not the doctor. |
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I hope you are feeling a bit better. I think your decision to Fly over instead of drive all the way is a good thing. Less time on the road, means more time with your Friends..:cool: Good luck with your new Doc, Beth. I don't trust Docs who won't take Medicare. My Mom had an eye Doc like that and after she died, he sent me a bill and I told him what he could do with it..:mad: :p Have fun with Son, Taffy. I miss you. Hi Judy, I hope you are doing OK these days.:hug: And a big hug for RW, FG,FFM, Pals, Eva, Sue Chris, and the Gang..:grouphug: |
I'm so glad that stinkin' sinus thing is giving you a break. If your humidity has been anything like ours, bleah!
Well, Sal, I'm still going to drive to Yellowstone. The main thing has been trying to figure out time and cost effectiveness. There are a few stretches of almost a thousand miles that are just in the way and nothing else. So, when I add gas, overnights, etc. it got to be kind of obvious that another approach might be better. I'm going to see some friends along the way but the main thrust of this is me, my country, and my car. I just really love doing it. I'm just not sure what to do about CBK. Maybe she'd like to fly cargo? |
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Hey....(popping in) son is at a wedding today and tomorrow.
RW..:eek: you went camping without Taffy? Sounds like you had some major fun time and the 'T' drug is working for ya! Cindy, won't CBK fit into your suitcase? Just cram her in there. Push really hard. She won't feel a thing.:D Flying would be a good thing. "We can all come meet you at the airports when you come, when you come...." FG...did you torch any marshmellow peeps? :Wave-Hello: Take care all! Taf |
Hm. I dunno, Taff, I think she might be claustrophobic or something. Besides, the amount of CrackerJack, Fritos and candy I'd have to pack for her would pretty much leave out my clothes.
Meh, I can't worry about that now, she's going with me to the near West, and CO, Dakotas, etc. Let's see how well she does on that jaunt. She took a beating over the weekend and I have to work on her again. Poor thing, she has travelled thousands of miles on the same staples. |
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So we just fed them to the fishes. That was more fun anyway. Squaw fish are really really dumb fish, they will eat anything. So I am back ... still fighting fatigue. It's winning. Feet still hurt. Pain is winning too. But on the bright side, I worked on a landscape design for a new client and they liked it and we're going plant shopping on Monday! I like buying plants with other people's money! Now just waiting on 2 other clients to make up their minds! Big jobs! Cool ones too. Got the results of my LP back - myelin basic protein was very high. Neuro said based on that alone, she'd dx me with MS. Hmmmm....I think I already MS. Went to see the new dermatologist on Wednesday about a spot I was concerned about on my lip (no cracks please!) and he wasn't concerned about THAT one at all, but was very concerned about 2 other ones elsewhere on my lip. So, they got frozen and he also found 2 more basal cells on my back. One is a 3rd reoccurrence. :eek: Not good. Biopsied and sent to lab. If this #3 comes back positive, I guess there is some sort of new procedure he's going to do so it won't come back. I wonder what that is? I don't want to lose my back, I'm kind of attached to it! :eek: :D I like this new dermatologist. He has nice staff, unlike the one I just fired. Bad office staff. I don't keep docs around if they have bad office staff. Put up with that with military bases for 20 years. I don't pay for that abuse now. I write them a letter and move on! They get one chance to fix it and then good bye! Last guy didn't even bother. After 12 years with him, I guess he didn't care about his patients. It's hot hot hot here and very snokey with all the fires. It's horrible! How's everyone else????? DM? AMN? Taffy? RW? Sally? Sue? Beth? I know I am missing some of you .... but hey, I am still getting to know this place so ----- What's shakin' gang?????? |
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I'm just chillin in my chair today, no motivation for anything but tv. Looking forward to visit with new neuro on Wed. I called yesterday and they have all my records, both paper and MRI's on CD. Good thing, been having some eye pain, headache lingers, and feeling more fatigue. Can't be heat because it's 20 degrees cooler, but we had rain (good thing) but it left us with humidity. It's high desert here, humidity is rare and (unwelcome in my book). :hug: |
Gee FG how many times have they told you, you have MS? Wow!
Way to kill those fish off. Oh, I forgot, nothing will kill off Squaw fish. Maybe you are still tired cause of the heat and smoke. Buying plants will get you excited I bet! While son was at the wedding today, DH and I drove for 3 hr up to Hurricane Ridge in the Olympics to find the upcoming hike's trail hike. :eek: I don't need to hike to find high country! We drove right to it!:eek: Sweet! High alpine trees! Flowers! Meadows! Air! I felt as high as the peaks across the way. All of this I used to hike to? Huh! Using my trusty Trek 1000 hiking stick I even walked 1/2 mile (without crashing). Made it to a sign that said, "NO FIRES ABOVE THIS POINT" I was so excited to see this sign. Never thought I would see one again. Use to hate those! (getting out books to see if there is anywhere I can backpack in 1 mile and camp..hey I got all day to get there and freeze dried is the treat at the end) |
Hi guys glad to see you are all in one piece today....a little overworked and tired but still not sick.sick. I'm okie dokie today....Meeeellllllllooooowwwwwwww..;)
A Friend, I hadn't talked to in awhile called today....we e-mail, but we haven't talked for awhile. Some friends of hers came to visit her in June and they took her out to dinner----she fell on an uneben floor in the restaurant and fratured her hip....hit her head but that seems ok. Did I mention that she has MS!!! Anyway, she was layed up for 3 weeks in a world of hurt. Listen to this...her friends, from Fla, stayed with her for the 3 weeks to take care of her. Now those are some mighty good friends.....Wow!!! I said to her well that's what you get for getting out there and living your life.:D She reminds me of Cindy and Cheryl....always out there doing something...LOL Ninety nite All :hug: |
Hi Sally, I guess today's call from your friend was a bit of good and bad. I hope your friend is mending well enough, and is not hurting so much. Sometimes with email we forget to pick up the phone. Not too long ago we didn't have computers. In my opinion hearing a voice is much more of a connection and a better way to communicate.
Don't get me wrong, I'd be lost without this group and the typing helps my stubbon hands too. I feel like you all are my extended family. Especially when mine is so far away and too busy. Thanks for being you, one and all. :grouphug: |
Taff, Flygirl has MS?!?! Sheesh, no one tells me anything! When did this happen!?!
Sal, how nice that your friend called, it's always so good to truly hear a person. Beth is right, it's funny how easily we fall into the email thing and feel that it's enough. Nevah! I say, I'm a phone maniac and refuse to let my people go! This weekend, I am up to my eyeballs in people but the new experiment is actually working! I forbade everyone to cook anything, we are on a strict carry-in diet and the historical stress around here is way down. I think we've hit on a winner. We did have a blast playing our traditional family game, "Pin the Crap on the Baby". Whenever we've had a toddler in tow, we get out the clothes pins and compete to see who can attach the most junk to the baby's clothes without her knowledge. This one was super easy to lure in for the hit and she was covered in clothespins and anything that would clip onto her. It was a great game! Today is my dad's 85th birthday and the sisters and I will stay back to make big heapum strawberry shortcake for my dad (his fave), while my brother takes him in the river to wade and flyfish one more time. I can't help him anymore so my brother will get him out there. I'm sad because I wanted to fish too, but I can't negotiate the banks at the stretch my dad wants to fish, so I'm out. I'll find my own amusement elsewhere. Update: It has been a few hours since I posted this and now everyone is in the river and it's really bumming me out a lot more than I ever thought possible. I hate this freakin' disease. |
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Wish your dad A Happy Birthday Day! and enjoy the memories being made. :hug: |
I hate it too, Cindy. I feel for you. :hug:
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I truly understand this more than you will ever know. Get up here and I will show you some river. We can do it together. Nancy |
Hello you lot,
I'm sorry I haven't been posting, but I'm really down and not feeling well so don't have much to add.:o I don't know what it is, but everything seems to be getting to me all of a sudden. I'm exhausted, tired of working so hard and then being so tired at the end of the day I don't even have the energy to deal with my own husband let alone trying to help make decisions about building the new house. I just realised that I can't do it ALL anymore, and that has me all worked up. Something has to give, but I don't know what. I usually start feeling like this when I'm starting an exacerbation, so I best see the Neuro this week.:mad: I miss chatting with you, and hope everyone is doing well. Cindy, wish your Dad a Happy Birthday and enjoy the rest of your day even though you weren't out fishing. You're a good daughter. I'll be around more when I'm more cheery, and less of a downer.:( Stay well, everyone. All the best, Chris |
Chris
It is good to hear from you, even if you aren't at your best. Seems like you've got two many plates in the air, and something got to come crashing down. I'm hoping it is not you. :hug: :hug: Here are a few hugs to let you know I hope you feel better soon. Please take care of yourself. I'll be sending you good thoughts. :hug: :hug: |
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:D |
Cindy I'll bet it bothers your Dad, just as much, that you wern't able to enjoy his fishing with him. :( Pretty crappy when your 85 year old Pop can get around better than you...Huh? Crappyass disease.:mad: Have a fun time when they return..:D
Awwww Chris, I hate when this disease takes it's toll on you youngsters. That is soooooo unfair. I'm sorry and I hope you are feeling better soon. I'm glad you came in to tell us, though, 'cause I missed Ya. You can't be cheerful all the time and you need support sometimes too, Ya know. :hug: I napped a bit today...got up to early and the Kids wore me out...they were a bit cranky and needed a nap too. Gonna watch a little BB and Cold Case, work a puzzel and hit the hay....exciting..huh?:rolleyes: All of you take care of yourselves.:grouphug: |
Chris, if you can't talk to us about it, who can you talk with about this?!!? We're the ones who know exactly what you're talking about, in fact, we're all talking about it right now!
It sucka sucka sucka, and sucketh yet more. I think your accent makes you sound cheerful even when you're blue. Yes, you do type with an accent.:) |
Nappy, I think playing 'Pin the Tail on the Baby' , sounds like fun!
Or, let's all met in Idaho. We can use Peeps for bait! |
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I'm happy today....SSon is home from Iraq..WooooooHoooooo!!! I haven't seen him yet. he will be over tomorrow.
His SO is still there until the end of August and then she will be home, so I still worry about her getting back safely. God, I wish they could all come home!!!! |
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