Saw my new neurologist today and he simply looked at me and said my symptoms are simply the lupus. was so nice to hear that and no judgments made its all in my head! so im having a good day. hes going to try and get my headaches and seziures under control with a different medication.
also wondering what you all do for excercise? i have days where i can walk more and other days i cant even get out of bed or walk up the stairs to get to the bathroom. i have gotten alot of upper arm strength and leg strength from pushing myself in the wheel chair on my good days. just looking at ways i can excersise even when im having my bad days. we have a public pool and there only open in the evening and my mom wrks nites so its hard to get there often.
Yoga is awesome. I have gotten away from it in the past couple of months and need to get back to it. You can buy a mat and a beginner DVD for about $25 at Walmart or target.
I wish I could! I am so thankful to get this one, all the other neurologist I guess are really rude. I also heard today that its really hard to get in with this guy, so I am pretty happy! I guess the third time is the charm! :) I am so happy its been a long road with the neurologists now we just have to get the right meds figured out... As my family says slow but sure wins the race leave me alone or I will slap your face ;)
I will defiantly look into the weights and see what I can find. Some one also said that they use soup cans for weights... I thiink have some weights I was using before I got sick but have no clue where they would be. Have any of you used a Wii before?
My nieces have a Wii and they are fun! You can get all different games on it- we played bowling. My eight year old niece bowled over 200 every game- she was the champ. Now they have a wii fit. I haven’t seen that one but you should check it out.
Chair yoga, and Tai Chi. Look for dvd's for seniors, or people who are differently abled. They will take the physical limitations into account.
I am so tickled to hear your doctor is compassionate, caring, and willing to try to help with a different med. My heart goes out to you - I too have seizure activity, and now tremors. Please keep us posted on how it works out? It is so great to hear someone is getting good care.
And, don't be shy about sharing the name of a good doctor. You never know who may be nearby and really need to find one!
Thanks! :) I live 30 mins from Grand Forks, ND which is about an 1 1/2 from Fargo, ND and about 7 hrs from Minneapolis, MN. Are town consists of a lot of small local shops and a local grocery store and a Wal-Mart. The hospital is a very small hospital and I believe only has like 30 beds or so. So I have to go to Grand Forks fot specialist as the clinic has only GP's and PA's. But the Alrtu hospital and the Riverview Hosptital is connected through Epic which is really nice so every doc can get my information through the computer. And my neurologist also comes to my home town once a month so we wont have to even travel to Grand Forks for those appointments. His name is Matthew Roller, he is really good!
So glad to hear that you have finally found a great doctor!! I know you were having a very hard time. This message was so upbeat it was refreshing to know that there are good people out there. I think you have just inspired me to try to exercise a little more!
I am so happy that things are going well for you! I have severe headaches too my neuro said they are migraines and started giving me Botox. I started having different headaches not migraines but they hurt just as bad. The doc gave me meds but says I can only take them three times a week I wonder what I'm supposed to do the rest of the time. Sometimes these headaches are so bad that I don't leave the house for weeks at a time and I feel like I'm missing out on my life! If anyone has this problem I would really like to know how you are dealing with it. May God Bless all of you.
I have been reading your posts since I joined this group. I am SO glad you found a nice person to treat you. I hope this is the way up for you. I am on my 3rd doctor as well and hoping 3 is the charm!! Please keep us posted how you are doing. So happy to hear good things come from your appt. Good luck and know we are always here when you need us.
My PCP had me see physical therapy and they set me up with a traction unit and a tens unit. they dont take me headaches away but they have helped lower them and have let me still function. so i dont know if that is something you can look into. I set the tens unit on the timer and take a nap while it goes works... I have struggled alot about missing out on things I used to do. My friends went shopping at the mall a couple of weeks ago and I had to say no, and that was really hard.... So I know how you feel! Piewacket said:
Dear Louter
I am so happy that things are going well for you! I have severe headaches too my neuro said they are migraines and started giving me Botox. I started having different headaches not migraines but they hurt just as bad. The doc gave me meds but says I can only take them three times a week I wonder what I'm supposed to do the rest of the time. Sometimes these headaches are so bad that I don't leave the house for weeks at a time and I feel like I'm missing out on my life! If anyone has this problem I would really like to know how you are dealing with it. May God Bless all of you.
My PCP had me see physical therapy and they set me up with a traction unit and a tens unit. they dont take me headaches away but they have helped lower them and have let me still function. so i dont know if that is something you can look into. I set the tens unit on the timer and take a nap while it goes works... I have struggled alot about missing out on things I used to do. My friends went shopping at the mall a couple of weeks ago and I had to say no, and that was really hard.... So I know how you feel! Piewacket said:
Dear Louter
I am so happy that things are going well for you! I have severe headaches too my neuro said they are migraines and started giving me Botox. I started having different headaches not migraines but they hurt just as bad. The doc gave me meds but says I can only take them three times a week I wonder what I'm supposed to do the rest of the time. Sometimes these headaches are so bad that I don't leave the house for weeks at a time and I feel like I'm missing out on my life! If anyone has this problem I would really like to know how you are dealing with it. May God Bless all of you.
Thanks for getting back to me so fast I went to a D.O and she said she was going to try something called OMT I guess it is kind of like a chiro doing an adjustment but if that does not work I will ask her for a tens unit. Thanks so much for your understanding! Be well.
I want to say thank you all so much for the support and kind words! It has been a really rough long journey with doctors and trying to explain lupus to my friends and family. I know I can come here and you all know how I am feeling and what I am going through. The only one that truly knows how I am feeling is my mom. My brother has really stepped away from me and my mom since I got sick. My dad passed away when I was 7 so it has just been me my mom and brother for years now. I just think he doesn't know how to except the fact that I am sick. He asked my mom "so her life is pretty much messed up for ever now", My mom said yeah she will have to deal with this the rest of her life. So I think thats why I haven't heard much from him. For my friends there like you will get better you wont have to be like this forever. I try to explain it to them in the way of cancer. I can get better and go into "remission" but I will always have it and like cancer without any warning it can come back. So I have to watch the things I do to avoid it coming back. Things such as stress, work load, sun light etc.... They seem to get it a little more that way.....
I understand how you feel as far as your brother is concerned I have two sisters and we used to be really close but since I was diagnosed with Lupus they act like I don't matter any more. They go to movies and out to lunch and shopping and I am never asked to go along. It really hurts a lot because I do love them. I guess since I have Lupus I am not worth anything anymore. I am older than they are by nine years I can remember changing their diapers and taking care of them while my parents worked. We live in the same house and they will actually lie about where they are going just so I won't want to come along {not that they would have me any way}. Sorry I am just venting but it's nice to have people who understand when others think you have lost all value because you are sick. Thanks for being there.
If it doesnt hurt your legs too much, even on your bad days you could lay in bed on your side and do leg lifts, even if its only five per leg, its still movement. and do the same motion with your arms the same amount of times each side. Also you can do butt crunches (tightening and releasing with your butt muscles lol) basically anywhere, sitting, standing, laying down. :) Those are some things I do even on my bad days and my bad days get pretty bad with the JRA and Lupus tag teaming me :P lol. I hope some of those suggestions help!
thanks ill try that! doing what i can when i can to keep strong! since ive lowered my prednisone ive been having a lot more pain. i see the new kidney doctor today so im pretty excited to see if he will start the cellcept. they have been talking about it since july and no one has started it.