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Done with my monthly IV IG! YAY!
Hello all! Just finished with my monthly IV IG - next month should be the last one for a while:D!
My neuro also reduced my pred to 30 - so hopefully I will be a little less "puffy" and be able to lose some weight. On the positive side, my DH bought me a whole new wardrobe - see? There is some good to come out of all of this! All of my blood work came back GREAT - I guess all of those supplements are really doing there stuff! My neuro did reduce my IV IG to 150 mL an hour - down from 360, just in case - doesn't want me to have kidney damage! I just laughed! I am a walking pharmacy as it is!:D Also got the results back from my MRI - bulging discs are the culprit - who knew they could hurt that much? He scheduled physical therapy for me, but until then I am going to take Becky's advise and ice down and then heat my back and take my pain meds............I refuse to be in pain in addition to everything else. I was able to go shopping last night for gift bags for all of my nurses. They have been so kind and loving to me! I am going to try and get disability - met a really sweet girl with Lupus who receives it and it has really helped her out.......she has a great lawyer! I also have an appt with an oral surgeon on the 19th to discuss implants. Great day, but boy am I tired! I am going to help my hubby with his radio show 2morrow and then be a BUM all weekend! It is going to be GREAT! Take care! Erin:D:hug::hug: |
Great that your ivig went well, and your pred is being reduced!!!!
take care Kate |
Yee Haw, Erin. Only one more IVIG treatment, huh? I'll bet that'll be a relief.
As for the bulging discs? Just another reason to veg! Hope the ice and heat work for you. Once you get them calmed down from this injury, if you ever feel the "twinge" again, get ice on it right away! I finally learned that, and it can make it better within one day if you catch it early that way. I remember when I was on handsful of drugs - I had a night time pill box, a morning pill box (different color) then a noon time pill box - all loaded to the point I could barely close their lids! I was never even good at taking vitamins except when pregnant, so that was my big goal - to get the meds reduced. I did get down to just a couple of supplements for a year, so chin up - you'll get there too! Enjoy your weekend - sounds great! Love to you! Becky |
Good news on the IVIG & Pred. I am so glad you mentioned Oral surgeon in your post ! I thought you were getting breast implants at first look ! LOL... I had to back up & read ! I had a good laugh though ! I hope the therapy helps, sometimes it does, sometimes it doesn't.
Mary |
A whole new wardrobe! Woohoo:circlelove:......that was sooo sweet. My husband brought home some beautiful roses and cooked steaks last night....I had a hard time cutting and chewing them...but they tasted awesome!!!!
I hope you get to feeling better now! Steph Quote:
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Thanks Redtail!
How are you? Are you feeling better? How is your mum? Auntie?
All of the kids are gone and it feels wonderful! I feel awful for saying so, but it is soooooo true! Big hugs! Erin:D Quote:
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Hey Steph!
Hey there! Great day today! It was hot, but I was able to get out of the house for a while and help my hubby! YAY!
We are so lucky to have such amazing husbands! What a blessing! Hope you are feeling great today! Big hugs! Erin:D Quote:
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Yes, good husbands are a blessing. He has been so patient with me...especially with all of this mess. God sent me a few wonderful angels to watch over me... (my mom and my husband)!:Girl(angel-flying):
Today is a much better day...looking forward to tomorrow...since so far this week...everyday has been better than the last....I will be glad when headache is completely gone! :Doh: Steph Quote:
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Hi Mary!
Hey girl! How are you today? I would LOVE to get implants - breast implants - but I do not think those are in the cards for me! LOL!
The only good thing about my weight gain is the fact that I DO have boobs for the first time in years!:D Now if only I could get rid of all of my chins and sideburns.........sexy!:D I pray that the therapy works.....I had no idea how painful bulging discs could be.......pain that shoots down my left leg and makes my left foot/side numb.........I hate just laying around, but after I've been up a while it just gets to be too much......sigh........ I hope you are feeling GREAT today! Big, big hugs! Erin:D Quote:
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HI Becky!
Hi Becky! It WILL be great to have my PICC line pulled and not have have to make my weekly trek to the hosp to get it flushed/cleaned. They are so good to me there, but I hope I don't see that place for a looooooooong time!:D
I am already feeling the effects of the IV IG -was able to go to my hubby's show yesterday and did some shopping - it felt great, but as usual I overdid it and am paying for it today......It is just so hard to try and rest when I feel so good. I've already been chewed out by my neuro and will do my best....Lord knows I don't want to be back @ the Methodist! It is so funny b/c I am so used to having my line that when I'm out in public and people stare I think "Dang, I must be looking gooooood today" until I realize that they are looking @ my line - not me! I laughed when I realized what they were staring @! I cannot wait to be in remission and take less pills! It will be awesome! I just know it will happen! My neuro told me that people usually go into remission 1- 2 yrs after the thymus is removed - well, I've reached the 1 yr mark, so I a ready! My hubby was able to get us a cruise on barter to Alaska. I am excited, but am also very nervous! I am not used to being that far away from Dr. I........... To be honest I don't even know if I want to go..........I am scared. Does that makes me nuts? I mean I know I won;t get weak like I used to, but just the thought of getting that sick again makes me cry........... Big, big hugs! Erin:D Quote:
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Erin, your so funny ! I have trouble with my eyes reading, & miss stuff sometimes, I always reread, if it sounds to funny ! LOL..... I have to laugh at myself sometimes.
Mary |
Hey Erin
I went on a cruise 2 years ago, but that was in the opposite direction. We went to Mexico and Jamaica. ;) I have been sorta dxed for 6 years, just positive last year. So I just had the surgery on the 14th. But anyway my point was, lol, that as long as I did not do too much walking I was ok. But that is hard to do on a huge ship and when you go on an excursion. I think the climate change was pretty tough at first tho. So I hope you will have time to adjust to it. I was really really scared to go too. But it was such an awesome experience for me and my kids. And thank goodness everything went ok.
I am glad you get to lower your pred. That stuff is horror, but so necessary. Glad to hear you are feeling better!!!:hug: Hope it all works out. Quote:
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Hi Maryec!
Hey there! :D
We are a pair, aren't we? I have problems with my eyes as well, after a while they get sooooo tired and watery that I can barely see.....sigh...... What a great weekend! Mike made me breakfast in bed this morning and I was able to get my house cleaned - felt great! You should see me with my line in.....it has become 2nd nature to me - my sis calls me frankie cuz' of all of my tubes, but it is well worth it.:D I THINK the Imuran is finally kicking in cuz' I was able to walk .4 mile yesterday in the heat - stupid, stupid idea, but I still was able to DO IT! I was a drowned rat by the time I got to my hubby, but was proud - that (for me) is a lot of walking! Can you imagine if my neuro DID approve implants? They'd prolly end up in my knees or something - with us MG'ers you never know! I am soooo glad I did not get them years ago - I bet I'd have some serious problems with them now... Also, I know my ped is a bit high b/c when it is I start to get facial hair - woo-hoo(!) - and that is my body's way of saying to knock it down for the time being. I see Dr. I (my boyfriend) on the 13th - hopefully he will reduce it to 20 or 25.......... How was your weekend? :hug:Erin:hug: Quote:
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Hi momma3love!
Hey there! Thanks for making me feel like I'm not nuts.........I don't like vacations as it is, but my hubby loves them and really DESERVES this time and I love HIM so I go! I would much rather go in an RV, but Mike likes to fly, plus we have to get to Canada and by the time we got there it would be like a scene from that movie with Jack Nicholson - you know "redrum", "redrum" - lol!
MG is just scary! That is all there is to it! I'd love to take my dr with me, but no such luck! LOL! Flying is another fear of mine - did I mention I'm OCD with control issues? We have had some really close calls - emergency landings and such - and that did not take the edge off for me! But, Mike does deserve this. He is the best! When we are in town we can never get away from customers and he now has high blood pressure. I've got to keep him around! I'd be the crazy dog lady with 50 dogs or something like that - can't turn them away! Alaska will be great! I've been there b/4 and loved it! It is so beautiful and pristine..........We may go fishing in Ketchican and take the train in Skagway - they were a huge hit b/4.............. How was your weekend? :hug:Erin:hug: Quote:
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I'm glad to read that you fully benefit from your IVIG's which make you capable again to do things you were doing "before"…
I would like also to point out that, if wonderful husbands are a blessing, wonderful wives do also exist… I think also I pretty well know how you feel about your projected cruse to Alaska, we will be flying next week to Sicily for an 8-day tour, that will be our first "big" vacation since my MG started and I am also a little nervous, will every go smoothly? I liked to travel (and still do) but I'm doing it also for my wife, same as you… Maurice. |
Erin, you are such a hoot!!! After my neck surgeries, the scars stuck out really bad (they are on the front of the neck) and people looked at me in horror. I finally got really honery and told them I was mugged and had my throat slit! You should have seen the reactions! I did tell them the truth then, but it was fun (sick, I know - my daughter says I'm evil).
I'll bet they were looking at how goooooood you look though, like you said - you have BOOBS!!!!!!! I understand your worry about the cruise. I get nervous just about trying to go to the store, and after all your problems I certainly understand the hesitance to get too far from your doc. How soon is the cruise? You definetly need to be sure that the doc on board is aware that you have MG, your problems with it, and has information about what to do. You can get on MGFA's website and request or download information for doctors. You may also want to see what your doc has to say about that trip at this time. I hope you are able to go! That would be so fun! Take care of yourself! Make sure your PT is aware of your MG too, so they don't make you push too hard. Loves ya! |
Oh Erin, I am so happy for you .... finally some good news!
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Hi Neutro!
Woo-hoo! Sicily! That sounds like fun!:D
And you are so right - wonderful wives do exist! I wish EVERYONE felt as great as I do after IV IG - no idea why they don't!:( I wish my hubby didn't like to travel so much, but he has been through Hell and back this last year and this means too much for me to back out just b/c I don't like to travel! How are you feeling? Are you strong today? Big hugs! Erin:D Quote:
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Hey Becky!
You are toooooo funny! I wish you lived closer! I think we could be the best of friends!
We have the same dark sense of humor! It is a rare and wonderful thing! Love it! Trust me - they aren't looking @ me! Maybe my ginormous boobs or my PICC line, but not my face - not now! The cruise is in July - perfect timing for the HOT Texas summers! I told my neuro about it, but am still scared! I should have married a neuro - but hindsight is 20/20, huh? Hope you are having a great day! Erin:hug: Quote:
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Well, with that cruise being in July that's a definite positive. What a great time to have an escape to a cooler climate! I sure hope it all works out and you can go COMFORTABLY.
I bet we would have a really fun time together. Wouldn't it be neat if we could all plan a place and time that we could all get to meet each other? I'm afraid that would be tough, considering how spread around the world we are, and the ups and downs that don't happen to everyone at the same time, but it sure would be fun! Maybe someday we will be able to at least get a few of us together. My best friend lives in Amarillo, so maybe someday I'll get to take a long vacation and go tooling around Texas visiting there and you! I just need to quit having to use all my vacation time at work for stupid medical stuff!!!! Talk to you soon! |
Hi Becky!
You sure have a GREAT idea! You know how other "minority" groups get together to share stories and such? What about a neurotalk MG group?
Just the thought of it excites me! No one to get offended when you get tired, no one to stare @ PICC lines or puffy faces - absolute bliss!:D I KNOW you have answered this b/4 but you know how bad brain fog is with MG - how long have you had it? You just know soooooo much about MG that I was wondering.......... I have no energy today @ all.........but Mike was home after his back stuff so we hung out all day - so much fun! I love being married to my best friend! My dogs can sense I am tired and haven't left my side all day long - you should see how cute and gentle my "little" pit-bull is with me when I'm tired........I never thought I would own one, but she was a rescue and is so smart! I would love to get together when you come down to Texas.........You won't want to come during the summer though....too darn hot! I am planning on setting up a home office, because the thought of even leaving my house when it is above 100 degrees is just too much! Big hugs! Erin:D |
Hi Erin,
I had a preliminary dx in 1997, the "for sure" dx in 2003, but of course now they want to reconfirm it! I have no question, have had symptoms since way before 1997 even, and especially after being on this forum and comparing notes with everyone. Check the new thread I'm starting soon - Good news for me and maybe a direction to look for others with overlaps! Talk to you soon. |
Disability
I am very curious about your efforts to get on disability. It is looking more and more like I might have to go that route. Anything you can tell me would be a big help.
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