FairlyOddMother and Jamie want to know…what’s gotten better for all of you?
AnonymousJune 15, 2008 at 12:11 am
So, here’s mine…
1. My face
2. Breathing (most of the time)
3. I’m getting a tan:cool: from this awesome weather!
4. My freckles are back for the summer:D
5. My baby bump – growin’ like crazy!
6. The pool – water is finally warm
7. I can swallow most of the time – that’s always nice!
8. I don’t choke nearly as much
9. My kids’ homework – school is out, so i don’t even have to think about it!!!
10. Fresh air – now that its warm out, my windows are open, and the fresh air makes me feel sooo much better!
How ’bout you?
AnonymousJune 15, 2008 at 11:58 am
I now think of myself as a bitter/sweet/bitter story, because I have been in a remission for five years now, that’s sweet, but I was severely struck by CIDP and I’m left with damage that time has shown will never heal, that’s bitter.
1. my last fall was eight years ago and I feel confident now that if I fall again it will not be syndrome related.
2. my energy and fatigue will never be normal, but they are better then they were during the first two years.
3. I no longer need to take naps during the day.
4. I don’t improve much anymore, but I maintain the strength and abilities I have.
5. I still get hand tremors and my handwriting is bad, but my hands are stronger.
June 15, 2008 at 2:17 pm
1. My flexibility is increasing. I was only able to very slightly lean forward while sitting to stretch my legs. Now I can not only bend down and put my hands flat on the floor while touching my toes, but I can lean forward and almost lay on my extended legs while sitting!
2. I don’t have to nap everyday. I may run out of steam by early evening, but I am not sleeping after the kids go to school and waking up at 1 and then running out of steam by early evening.
3. The numbness in my palm and fingers only happens on rare occassions.
4. I don’t get hiccups all the time while eating.
5. The tightness in my neck and throat is a rarity instead of a constant. And the feeling of needing to clear my throat constantly is just about completely gone now! And I can swallow without feeling like I didn’t completely swallow if that makes any sense.
6. I can feel hot and cold so I don’t get burned except on the oven (if I am baking I can be careful and somehow end up coming into contact with a heating element or hot pan. But that has happened for many years…We keep Corona ointment on hand and it is a miracle cream!)
7. I can run if I have to!
8. I am able to lift 10 pounds above my head in two sets of 10.
9. My body temperature is almost to the normal level now (97 instead of 96)
10. The overwhelming fear of getting sick or GBS coming back every time I have a rough day is much much much better.
11. My leg muscle twitches are down to only a couple a night instead of so many, so often that it made sleeping with my hubby awkward and a bit embarrassing.
12. My memory is better, not 100%, but I can actually carry on a conversation without using replacement words like “thingy” and “whatchamacallit” or saying the word and sounding as if it is a question (like asking if I am saying it correctly or if it is actually the right word). LOL don’t get me distracted though cuz then all bets are off.
13. I can do more on my own without asking for help from my family.
14. I am able to climb up and down stairs. When I was first sick, it was about 4 months before I could slowly and step by step make it up a short set of stairs. Now that we are in a house with stairs…steep ones (weird!)…I have no choice but to get a lot of practice. Some days my legs may be tired by the time I reach the top, but more days than not, I am able to do it without much discomfort. I am still careful since they are steep and always use the handrail…or lean to touch the wall if I am carrying down a load or two of laundry 🙂 but I can do it so that makes me happy
15. My pincher grasp in my right hand is getting better. I can reach out and grasp something small much more quickly now than even just a couple of months ago. Before, it was as if my brain and fingers had to “link up” before the action happened. Now I can do it without giving it much thought.
16. I can sit and stand for longer periods of time than I was able to at this time last year. For work, I was thisclose to getting a laptop because sitting at my desk made my legs ache and I would be in so much pain.
17. My eyeballs dont feel as if they are rolling back into my head when I close my eyes to go to sleep at night. I still experience vision weirdness, but not nearly as often these days.
18. I am able once again to find positive things around me. I have always been a fairly “find the bright side” person, but getting hit with something like this knocks ya for a loop. Now I find so much more worthwhile, and having to slow down and take it easy has enabled to me really open my eyes and ears and enjoy what is right in front of me. Like this….I didnt even know this little guy was in my garden! But, I spotted him while taking about a hundred shots of a busy (and annoyed at me) ladybug.
and of course the ladybug I was annoying….
even a thorn on a rosebush is beautiful with the sunlight shining on it.
Slowing down has its advantages. I didn’t plan on it happening this way, but ya work with what you are given.
June 15, 2008 at 5:26 pm
Most everything has gotten better for Kevie. Even infusions this month. He was not sick at all it really is a miracle. His hamstrings are better, he can lift his legs higher when running and headaches in general seem to be better. I am so happy for all of you that feel better!
AnonymousJune 15, 2008 at 7:29 pm
you all sound good! and those pics are gorgous! never thought id see a thorn as something femanine and graceful, but that is exactly how it looks! i told my little guy that we are going to start taking lots of pictures, after seeing the simple things that come out so beautiful in your pics.
AnonymousJune 15, 2008 at 9:54 pm
The pictures are beautiful! I actually have a picture from here on the forums that some one took as the picture on my computer desktop. It is a picture of a pink clematis flower and I love it. I may have to interchange and put the thorns up though. They are beautiful. Or maybe the lady bug…my favorite bug in the whole world.
What is better for me? Well I am far out from this disease so it is hard to remember everything, but I have to say it has definitely given me a lease on life that I did not have before. I see everything now as a gift, even in the darkest of moments, I look for the blessing/lesson behind it. It is hard somedays, but I know now that life is just too short to waste feeling sorry for myself. I do allow some self pity but only for a moment. Then I tell myself to move on! I am more in tune with my body and sensitive to it’s needs. I listen more to what it is telling me. I don’t let anyone tell me I should do things differently….I do what I need to and that helps me stay well.
June 15, 2008 at 11:18 pm
Jan, thank you for the compliments. If you would like a larger version of one of the photos, I can send it to ya 🙂
I agree with finding the lesson/blessing in things. It helps keep my head above water and keeps me plugging along.
AnonymousJune 17, 2008 at 4:46 pm
Is the photography thing a hobby or a profession? Have you had any training? Is your camera one of those super-expensive professional ones? Your pictures look like it! Wow! I’m going back to school for my masters in nursing education, but was considering photography instead. Seems like a crazy leap from the medical world though. But, maybe it is more reasonable of a profession, since ive gotten sick?
Baby is coming along fine. And i only gained one pound this month – i had backup pounds readily available:D Actually, my face is thinner now, with 6 weeks left to go, than it was before i got pregnant. Probably not too good of a thing, but not feeling chubby feels good. I’m not skinny, by far, but maybe i wont be as overweight after delivery as i was pre-pregnancy. Sure that seventy pounds i gained in the past few years cant do anything good for the body:eek:
June 17, 2008 at 7:19 pm
No training, and my camera is out of date but only a year old. It’s a Fuji Finepix S5700. 7.1 megapixel with a 10x optical (ya want optical to be the higher number of the available zoom…there is optical and digital) decent zoom and a macro setting I obviously love. I remember taking an interest in photography at a very young age. Using my moms old Kodak with the little cube flashbulb that ya attach to the top. She used to complain about film development LOL! I still have some of my very early photos…maybe I’ll dig em out and scan them just for fun. I wanted to take classes but never pursued it because I was too intimidated by them. But, have always looked at things a little differently and had a lot of people look at me strangely when I would point something out from my point of view. My hubby doesn’t like when I take pictures at an odd angle, he says he prefers normal shots. I recently pointed out that even pros are using angled shots in their advertising photos and film work. And those people have had lots of training and experience I said. To each his own right? I thank you from the bottom of my heart for the compliments!
6 weeks to go! Hard to believe that the time will fly so quickly and you will be a mommy! Have you picked a baby theme? A name? Is this your first? As for gaining weight, my first I gained a ton. My second not so much. my third abou the same as the second. With her no one even realized I was pregnant till I was about 7 months along. I hardly showed till then and suddenly I “blossomed” LOL! The hard part I agree is feeling “chubby”. But it is all worth it for a healthy happy adorable little baby to share life with.
AnonymousJune 17, 2008 at 11:27 pm
the ability to walk in the house without the walker. To walk from front door to car without the walker.
hands and arms feel almost normal at times. Still get pins, needles, pain, numbness, etc, but less frequently.
able to go to the pool with husbands help and do some floor exercises.
less trouble swallowing
less general pain
AnonymousJune 18, 2008 at 9:49 am
Went from wheel chair to walker and now learning to use a cane.
Able to take care of all bathing, dressing and personal needs without help.
I can mow the lawn on the rider for short time only.
My fingers grip better.
Can do laundry.
Keep my kitchen clean and can sweep and mop with a lot of 5 minute breaks.
Got down on my knees and cleaned the toilet yesterday for the first since getting GBS. YIKES!!!! NOW I HAVE TO DO IT ALL THE TIME!!!!!
Made the bed once. That was too hard lifting the mattress and tucking sheet. Will try it again in a few weeks.
Have cooked a few good meals.
Swallow without choking
Hand writing improved.
That nasty painful bed sore I got in hospital last Oct. 07, finally healed in Feb. 08.
Made Dora the Explorer birthday cake for 5 year old great neice.
Gave her a birthday party and cooked homemade chicken and noodle dinner for family.
That was great day, to do for my family after they stood by me all these months.
My family, husband, step father and his wife, niece and her husband, great nieces. I know it was a rough few months,
Son, a marine in N.C., didn’t want him to see me in that shape but he and wife came for five days leave to see me. I’m happy he did.
Brother in Tenn., too sick to travel with heart and he’s diabetic and I didn’t want him to see me in that shape.
My uncle, has prostate cancer and his wife has hodgkins, he still came to see me in hospital and at home.
Cousin, works full time and cares for grandson when not working, came to see me.
We have all gotten closer and stay in touch more often.
Thank you family, for every prayer, visit, phone call and all the things you have done to help me.
AnonymousJune 19, 2008 at 8:29 am
What a great thread! It is nice to see all the “positives” and see how far people have come. Congrats to all! My biggest joy of the year is being able to garden again. I haven’t been able to for 2 years now and it was killing me! I have tomatoes, cucumbers and zuchini. Those are the only plants that the bunnies don’t help themselves to! My flower gardens are getting attention a llittle bit at a time but it keeps me going.
AnonymousJune 23, 2008 at 11:30 am
Things that have got better for me….
1. I’m able to work and provide for my family. Number ONE goal when I was in the hospital. Absolutely number one goal, period. I had to drive my wife to the hospital when our youngest daughter was born, and worked FURIOUSLY hard to obtain my license back, and get medically released to drive. But number one goal, is providing for my wife and daughters.
2. My typing speed has improved. Not quite what I was before…but I’m able to hang in there and get down what’s said.
3. I’m able to cut down trees again. Something soothing when I’m cutting wood…sounds CRAZY, and my wife thinks that I’m crazy for doing it. But when I’m falling trees and cutting them up for use, it’s almost like I’m John Walton on Walton’s Mountain cutting trees down and selling the wood to provide for my family. I can’t go as long as I did, nor as hard as I did…but I can still get it done.
4. Spend more time with my kids. I read all of the posts, and there really is something to be said for slowing down. When I was working 70+ hours doing depo’s, and then cutting firewood on the weekends, and hunting in the fall, I wasn’t home at all. Now, I’m home and loving it. Board games, tag, soccer, tea party, playing school – with all of her stuffed animals, playing hospital – with her stuffed animals, and everything else that goes along with loving my girls is AWESOME!!! I LOVE IT!
5. Vision is back to normal…I had a stretch of double vision, but that has cleared up now.
6. I too have anxiety about every time I get sick thinking that I’m going to re-lapse, but that is getting better.
7. Just enjoying life….I’ve got better at enjoying things that I didn’t before. Lying on a blanket with my wife, eating lots of watermelon and watching both girls play on the playground at the State Park yesterday was just about my description of Heaven on Earth. 🙂
Thanks, Jamie and FairyOddMother….great thread.
AnonymousJune 24, 2008 at 11:34 am
[FONT=Georgia]With all the losses of my relatives this yr & everything else that I’ve tried to deal with. Especially the Neuropathy pain the Lyrica I’m on has helped, it stopped the burning pain in my feet. I fell asleep last Thursday night while watching tv, so when I woke on Fri. morning. I had bad stinging pain in my fingers & toes. I even had trouble walking at first, but I took the Lyrica & it took what seemed like hours for it to work. The pain was going even at work, but I didn’t forget that night to take the lyrica. [/FONT]
[FONT=Georgia] Sat. moring was alot better the pain had backed down, I have learned ways to keep going, I dealt with constant backpain when I took care of my wife Debra. But somehow I managed to keep going, because I knew what the pain she suffered from the cidp was putting her through. She was my No 1 priority & a few mnths after I lost her, the neuropathy unloaded on me. I just kept trying to figure out why I was put through this. I’m just wishing for a better day to come, if there is any. Here’s my one wish for everyone, that some how, some way that things will get better for all of you. [/FONT][FONT=Palatino Linotype][SIZE=5][COLOR=purple] [I]Remember This I’m Pulling For You ![/I][/COLOR][/SIZE][/FONT]
AnonymousJune 25, 2008 at 11:16 am
What’s gotten better? Please see my photo. I am sooo happy and proud that I can lift her over my head. There was a time when she was younger that I I couldn’t dress her or even hold her standing up. I was afraid that I would drop her. I love finding pleasure is the smallest things! 😀
June 27, 2008 at 4:13 pm
I wanted to post something else I have noticed just recently…
Usually my down days are the 21st and 22nd and of course my monthly for a couple of days. This month I was slightly off those two days and no problems at all with my monthly! The worst I have dealt with (knock on wood) is that weird vertigo that isnt like an inner ear vertigo but something else. And of course fluff in my head. But, having only 2 slightly crummy days is much better than being down for a week or two each month. It would take me several days to ‘recover’ from the 2 down days, then I would have to deal with hormone related residual flare ups which I would also have to recoup from. So far this month, I am on my feet, climbing the stairs faster than usual, staying on my feet much longer than usual, and have managed to clean my daughters room and carpet, the bathrooms, the kitchen, clean litterboxes and take care of the garden. And that is just yesterday and today so far. I am very excited!!
Off to run errands and celebrate hubbys bday.
AnonymousJune 30, 2008 at 11:58 pm
Being the care giver of my daughter who was diagnosised with GBS at age 4, and did not fully recover (she works with forearm crutches) I don’t know if I should be the one to respond to this thread. However, I have found so much support on this website, there are days I don’t know if I would have made it through without the support and information I found on this website.
Things that have gotten better:
-Abby doesn’t let her disablility hold her back AT ALL (this hasn’t gotten better, this has always been)
-we are actually enjoying summer, we don’t have pt 3 times a week and dr appts on top of the pt like last year
-I don’t think of Abby as disabled and really don’t treat her any differently from my two sons…she is jsut Abby
-my 2 year old is more indepedent…he was 6 months when Abby was diagnosised and hospitalized for a month, that was tough…we also have a 7 year old (he was 5 at the diagnosis)
-people and especially kids look at Abby as Abby, not as a disabled kid
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