Update on my surgery!
AnonymousOctober 4, 2008 at 6:33 pm
Hi family! Was not in here for a few days. Had alot of company for two days straight coming to visit me and I was just to worn out to come online and post. Still have not gotten my voice box yet and whispering but it does sound like it’s trying to come back some. Seems like my whispering is getting louder than it was this past week. I had my RAI again Friday morning and did okay with that. A few minor side effects but not drastic. Just a headache but have had a headache ever since my surgery so it might not be side effects. Not bad headache but mild.
Still sleeping all night which is fantastic! I have not seen this kind of sleep in a very long time. It’s a true miracle for me to finally be getting sleep.
Doctor did some labs on Friday too and I go back again next Friday. He’s keeping an eye on my levels so we can see how well I am doing. So far so good! Too early to tell about my nervous system though. Still having the numbness and tingling going on but not having the burning sensations. So there is some improvement as far as burning sensations. Not having as much nerve pain but it’s still there just seems to not be as bad.
Since some of my symptoms are not there like they were before though, I can actually feel just how bad this nerve damage mess has gotten. Both of my legs feel dead feeling almost like having a rubber band wrapped around part of my legs and both arms are damaged and of course I knew that but with the other things going on, I was to busy fighting sleep and pain that I could not tell the other stuff going on. Wow do I have some damage. But it feels like part of me is coming alive some. I had a few toes yesterday actually wiggle on their own and they have not wiggled any at all for two years now. And I keep getting these weird twingy feelings in my legs. Almost like a small electrical shock but not painful. Just as if something is trying to light the fire so to speak! Keeping my fingers crossed on that one!
So far everything is looking pretty good. So far! Just hope it stays this way!
Still eating ice pops and slushies and now eating mashed potatoes and foods that are not to harsh on my throat. But boy am I starving. The mashed potatoes have been good and soups are tasting okay. But I could take a big nasty bite out of a steak right now! LOL! Maybe next week when some more soreness goes away, I will try some other foods. A little too scared to eat that steak just yet. Will try and heal a little more before taking on the rough foods! At least some of my misery has gone so I am grateful just to see that tiny bit behind me. Still looking forward and not looking backwards!
Thank-you all so much for your prayers and a warm thoughts! Hugs
But over all! So far so good!
October 4, 2008 at 10:28 pm
Great news Linda, will say extra prayers for you tonight.
Dawn Kevies mom
AnonymousOctober 5, 2008 at 9:44 am
Hi Julie! I wish the same for you also and hope we both and I incude the rest of us in here to see better times ahead. You know! I don’t care if I get 100 percent better even though I would like to, but I will be happy to see even 50percent and will settle with that. At least 50 percent will put me in a better place than I was before! 😀 So far things are looking good. Stayed up last night late and watched a good spook movie. Normally I have not even been able to do that without nodding off and waking up several times missing several parts of the movie and even in the daytime, I was doing the same thing. Then late at night my body was racing and going nuts. After the movie ended I went to bed very late but actually slept. Normally I would be up at 3 or 4 no matter what but actually slept till 9:30! Yipee!
Julie! I hope that you some day you see better days ahead and you too get well again! I hate seeing any of us sick or in pain. Not fun going through.
Ohh! I woke up this morning and again had that wiggly toe! I can’t figure out how to describe it but it feel like some inflamation of the nerves is going down and am getting these weird sensations. Like last night I got chilled and got the goose bumps. I have not seen goose bumps in 2 years. It’s little things but gosh does it feel good having them. I have not had any feeling what so ever in my toes. None for two years and now I am getting a wiggly toe! 😀 That toe wiggle has sure put a smile on my face. If that’s all I get back, I will be happy with that. Just as long as I can sleep! That loosing sleep every night can tear the body up and it feels so wonderful getting it!
Still have not had the radiation yet and not sure what to expect and a little scared but right now I am just going to live for today and not think about that path until I get there! Thanks Julie! Thanks to all of you! You were there for me in so many ways! I just hope that I can be there for somebody else in here and they too get better and well again! Many hugs!
AnonymousOctober 13, 2008 at 9:39 pm
[QUOTE=Cathy C.]Hey! Linda,
I am so glad things are finally looking up for you. I’m sorry you have had a rough couple of weeks but it sounds like there is light at the end of the tunnel.
Hugs & prayers[/QUOTE]
Linda: You mean taking out the thyroid is what has changed things. I know you have lupus and checking on Duke for other things like cidp but it would be wonderful if this is taking care of you. I hope and pray each day will get better for you.
AnonymousOctober 14, 2008 at 8:28 am
I still have Lupus and still have the CIDP issues but the doctors are hoping that my thyroid issue was what has been causing my problems. I know since my surgery, I started sleeping much better and am enjoying that. No longer have the tremors and shakes and anxiety attacks. Fatigue issue has eased up some. So I too am praying this is what caused the CIDP. They still want me seeing the doctors at Duke in November and get checked just in case there is still a problem. Plus we have to rule out Lupus causing the CIDP since I had nerve damage problems before with the Lupus. And then there is also that possibility that I have another problem just lurking and each time I get sick it attacks my nervous system. So now it’s a rule out study on me!
But I am feeling much better since I had this surgery! Alot better!
Still not 100 percent back to normal and can tell I had alot of damage done to my system but am feeling much better. Just slow trying to heal up. My head feels better too. Not all dizzy feeling and feeling like I am going to pass out like before.
The only thing I see right now is that nerve damage kicked my butt and really did some major damage. Something has stopped though with the nerve damage. Not getting the vibrating sensations, numbness is still there but the tingling has stopped. My body is weak feeling though. Damage got done and now I have to start working on trying to get fit again. Building up my strength! I have been trying to exercise some but see myself getting worn out really fast. Last night I tried something that might help. Doing exercises while laying on the sofa. Trying to get my legs stronger. Looks like it’s going to be a winter trying to build my system back up. My lupus will always be there and never go away. But I handled that okay.
I have feelings in my hands now though. Got my hands back. No more fire burning pain. Arms are still weak but need physical therapy. So I am doing the physical therapy now. Hopefully in November when Duke see’s me they will say it was the thyroid that caused this and then I am on the road to recovery! I hope! That thyroid gland can mess a person up if it gets a problem. Now I know what it’s like having problems with that. It to me was worse than Lupus! I guess my body got used to having Lupus and I was able to cope with it! But that thyroid on the other hand that was enough to make me go crazy, insane and was depressing! Glad they took it out! Taking out my tonsils too… my husband told me I’m not snoring anymore! Yeahhhhhh!
AnonymousOctober 14, 2008 at 9:56 pm
Hello buddy! How are things going? I read all your messages and am glad to hear you are doing much better just from the sleep you are getting. When recovering I took an change in feeling to be a good sign that things were changing and getting better. Keep up the positive attitude and they will get you back to eating good meals soon! Stop talking and let those areas heal and let that voice rest. Knowing you, I bet you are having a hard time doing that! LOL I will keep you in my thoughts and prayers! Behave and remember to smile at the nurses they are the ones that can get out a larger needle! You don’t want to make them angry! 😮
AnonymousOctober 15, 2008 at 8:09 am
😀 Hi Kitt! Actually not talking to much because my voice is still doing funky things. I can talk but it’s more a low whisper type of talk. It sounds louder though so I think the voice is coming back. Another week I might be able to talk again. I hope! Not fun being able to not talk! LOL!
That is one thing I still have had problems with. But doing better! The sleep feels great! But my body with this nerve damage it really did damage. Very weak muscles. I’m going to have alot of work to do on that issue!
I’m thinking about getting a treadmill! With winter coming, it’s hard getting in the cold walking. LOL! At least a treadmill would have me going inside my home. And I could exercise anytime I want too!
Thanks my friend! I’m doing good so far! Hope it stays that way! Hope you are doing okay too! Loved that car you placed on the site! Beautiful!
AnonymousOctober 15, 2008 at 9:32 am
Linda I think that all of us should ask for a treadmill for Christmas. I think I am going to put in my request too. Hubby could also spend some time walking on it too! I have dropped my membership at the health center and all my rehab is over so I think that is the route to go. Continue to get well, I am so happy things are starting to show you results already! 🙂
You must be logged in to reply to this topic.