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IV IG = "liquid gold" - love the stuff!
Hello all! Just thought I'd post some GOOD news for once.:D
Finished my IV IG and was able to get all of my housework DONE this weekend! Plus, I was able to work today! It felt amazing! I hated being @ home all the time - it was just depressing~ My pastor and his wife came by this weekend - it was great! I just KNOW that 09 is going to be a great year! For ALL of us! Kathy also posted an amazing post - if you have time, please read it! It is so inspirational. It shows just how far you can get in one year!:D Last year @ this time, I truly thought I was crazy. Too weak to do anything. Anything! And now I am able to get my work done, take care of my fellas (most days) and feel human! I know that MG is scary, but with a support system like ours it is tolerable.....THank all of you for being so kind! I really appreciate it!:D :hug:Erin:hug: |
great news
Hi Erin:)
how lovely to hear such great news for you your certainly making the most of your new strength and buzzing take care Alan:hug: |
woohooo for buzzes and energy, that is how I get when taking oral Prednisone for my symptoms when they get really bad, I am undx..
just wanted to say glad you getting some energy and somethings done..hugss,sarah |
Glad to hear you are feeling so good Erin!!!
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Hello Alan!
HEllo there! How are YOU? Are you getting stronger now? How is your breathing? Your walking?Swallowing?
Tell me all about how cold and BEAUTIFUL it is there - I would give almost anything to be snowed in here - with a generator and lots of fire wood:D! It has really been a great day! I've gotten so much done that I'm gonna talk to Dr. I about getting it regularly..........don;t know how far I'll get, but he does have some patients that get it once a month, so we'll see....... What has been going on with you? :hug:Erin:hug: ] Quote:
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It is fabulous!
I just love the feeling! I know that some people have a hard time with it, but I get 5 400 ml bottles and they can crank that baby up to 360 ml an hour - I've never had a reaction.......it just feels so good! The plasma exchange is the one that really gets me - too gross for words!
I am @ 60 mgs right now of pred, but have been able to taper down my mestinon to 2-3 pills a day ( I was up to 7-8 before) and the GOOD effects of the pred are kicking in - love the energy! Not manic - just being alb eot get off the sofa and get some work done....... Going to see my onc tomorrow for more blood work - finally getting over the whole blood/needle issue!:D Thought that day would NEVER come! What a great day!!!! How do you handle getting around? Do you have much strength? :hug:Erin:hug: Quote:
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How are YOU?
Redtail - are you OK? How is your strength? How are you handling the heat? I worry about you............
You are always in my thoughts and prayers! Always! :hug:Erin:hug: Quote:
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Thanks Erin,
I'm doing ok, I went for 5 walks last week, quite a big thing. I get up at 7am, then head out around 7.45, I wait for the Mestinon to kick in, and walk for about 30 minutes. Im hoping I'll get a bit fit, and lose some of the weight I've put on. I'm hoping I can keep this up, even If I have to drop it back to just a few times a week. Today is the first hot day, its probably getting over 31C, tomorrow and Thursday are going to be up around 40C(104F) so I will be hibernating in my cool little house, with lots of fruit juice icy poles to keep me cool. Its good to hear you are getting over your needle issue. I had a blood test last week, and the lady said they were having problems with the tubes not creating suction. We blew one vein, and then went into the other, and ow it hurt. I will be happy when one day I can stop having blood tests every month!!! How are you doing, still good?? |
I'm pretty interested in getting this someday..I've given it a LOT of times, and the reactions, albeit infrequent, are no fun at all.
Very glad to see it's helping you out! Everyone I've ever given it to loves it, only 1-2 kids got sick with it..aside from the reactions. Otherwise it's AWESOME! I had several patients that would get it monthly when I worked at the hospital. However, none of them had MG. Hopefully you get something worked out with your neuro so you can get it more frequently. |
What were the reactions?
Hello again! What were the reactions? Other than being thirsty, I feel AWESOME! The plasma exchange is what I cannot stand-----too invasive and grosss and I feel tired for a while..........
I see my neuro in the 24th - gonna ask him for monthly maintenance - hope it goes well.....still waiting for my central line......he is fighting me on that one Erin Quote:
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I am so happy for you!
Wow! You walk for 30 mins? I think I would pass out! Truly! :D
I park my car far away from my office and that is the only real exercise I get right now.....though I am thinking about getting on my treadmill later on today....... How are you feeling? Are you OK? What is going on with the fires? Are you safe? I know it's got to be hot there - are you taking potassium? Are you swollen? I am a whale! My pig face has come back! Eyes are like slits in my head........I don't even recognize the face in the mirror and I have family coming down this weekend...........for karaoke no less! I'm gonna stay home 2morrow and ice my face down all day and pray that it goes down by Friday.......... Please let me know that you and your family is OK.......I worry about you! And I still pray for you all the time! :hug:Erin:hug: Quote:
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Hi Erin,
I think I'm paying for my walking, I had a huge migrane last night, and today, my mg is not too good. The fires are on the other side of the country from me, but it still makes me cry!!! Today is hottish, and humid ICK!!! I'm taking pottasium, have been for ages, and if I go off it it starts to decline again, so I guess while I'm on pred I'll be on pottasium. Hope you feel better after your rest day. take care |
Hey Redtail!!!!!!
Spoke too soon! Stupid MG! Stupid, stupid MG!! The sad thing is no one really inderstands how it affects the QUALITY of our lives......people take walking, swallowing, eating, breathing for granted.........something, sadly, we do not do!
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I forgot to take my lunch time mestinon the other day.
Later that day, while I was eating tea, my lips wern't working, I was wondering why until I realized I'd forgotten my mestinon!! Yep once I took things like this for granted, now I try and laugh when they happen. |
Hey Kate!
Today was a pretty great day! It actually started last night when I was so inspired by your walking that I got on my treadmill and walked a mile...I was so scared at first, since that is the first REAL excercise I've had since the surgery, but after the first minute I was clicking along @ a good pace! Granted, I only walked a mile but it still felt GREAT!!!!!!!
Then today I was a bum! I iced my face down and had my nails done and colored my hair! I know it sounds silly, but I really want to look pretty for karaoke tomorrow night! Mike's family will be in and I want to have a good time! I know my moon face shouldn't make me feel so self conscious but it does! How are you today? Are you feeling ok? How is your head? Did you a=have a good day? :hug:Erin:hug: Quote:
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Hugss Erin and all,
Not sure I know much about MG, but learning some, I think my ailments are like MS or something like it they have not figured me out!! uggg Either way, I know what you mean about people not realizing what it means to struggle at just easy stuff in life. I have to be careful with exercise, if overheat I have problems. hugss and good days to you, sarah |
Hey Sarah!
How are you feeling? When do you get your dx? What do the docs say? What sort of tests have they run? How is your energy?
A friend of mine has MS and our trigger points are the same; heat, stress, etc.......we just chuckle about it....what else can you do? Are you on any meds? When you get some time, I'd love to hear from you! :hug:Erin:hug: Quote:
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