This post is actually inspired by cayleigh's post "How long for your diagnosis".
I was first diagnosed with fibromyalgia first about twenty years ago. This diagnosis came from an orthopedic doctor. He was really up on the latest knowledge because back then all the other doctors thought I was just being a baby with my pain. About two years later I was under a tremendous amount of pressure at work and I was having just terrible migraines that made me so sick I couldn't lift my head off the pillow. I ended up quitting my job and spending 6 months basically in the dark and had to have things extremely quiet. I had all sorts of tests. They thought I had a brain tumor. A neurologist ended up calling me on the phone saying "I think you have lupus but we are not going to worry about that right now". Well I told my husband and he was the one who said I think our next step is a rheumatologist. It was trial and error with her to get on the proper meds that helped me. One thing she always has said is that there are too many meds out there that can work in combination to help, so never stay on a medication that gives you bad side effects.
Lupus is such a strange disease. I was always aware that I had it because of my bad flares but I always knew there would be a good day along soon. Now for the last five years it has really hit me hard with some very harsh damage to my body. The only thing that has kept me going is that I love to get out and talk to people. My sister says I never meet a stranger. I always find with my conversations that it is very rare to find someone that isn't dealing with something. Life is a roller coaster for everyone. I could always go home and put things into perspective and not dwell on my problems. I could no longer sit and cry with the feeling "Why is this happening to me?" and I would answer to myself "It is just not you sister!"
So here is my problem...Since I can't get out every day and I am basically confined to my wheelchair in my home what can I do to keep things into perspective or just enjoy the day?
find a cute hobby that you can use to help others :) I still get out al ot but I find this so meaningful and its changed my life- I crochet hats for preemies (I do this as I lost my newborn) I also have a sponsored kid from compassion international- and I write her a lot and I love getting letters back.... I write a lot. . .
find a true passion and follow it :) I love touching lives..... we can do so much with our gifts
You know I actually have participated in making wheelchair blankets for people in a home my father was in for a short time. Kind of forgot about that. Thanks for your help!
Potslupus said:
find a cute hobby that you can use to help others :) I still get out al ot but I find this so meaningful and its changed my life- I crochet hats for preemies (I do this as I lost my newborn) I also have a sponsored kid from compassion international- and I write her a lot and I love getting letters back.... I write a lot. . .
find a true passion and follow it :) I love touching lives..... we can do so much with our gifts
I put on a favorite movie...Pride and Prejudice, or a romantic comedy. Surprisingly, regardless of the time of year Christmas movies make me happy. Turn off the computer, turn off the phone and lose myself in someone else's life for a while. My body rests, my endorphins increase and my stress level decreases.
sometimes I just have to take myself out of my life for a while, and it helps almost every time.
Do what works for you and remember that whatever you have to do to take care of you, is okay
There’s a church near my home that puts up the neatest messages on its marquee. A couple of years ago they had this one “Someone is praying for what you’re griping about”. I love it! Whenever I feel like having a pity party (about anything, not just Lupus) it seems like I hear of someone else who has something much worse and then I’m grateful for my own problems. Definitely helps me keep things in perspective! I really like your attitude!!
There's a church near my home that puts up the neatest messages on its marquee. A couple of years ago they had this one "Someone is praying for what you're griping about". I love it! Whenever I feel like having a pity party (about anything, not just Lupus) it seems like I hear of someone else who has something much worse and then I'm grateful for my own problems. Definitely helps me keep things in perspective! I really like your attitude!!
Gee Aunt Pearl, you always have such upbeat messaages and so giving of your knowledge that you caught me by surprise with your post. Soooo there you have it...you already are doing something when you post. You wheelchair blankets that you made can be used by so many besides nursing homes. What about blankets for newborns that don't have a lot? I heard about this in IL just before we moved to IN that there are many babies born to people who have very little or sometimes they are given to young children that are fighting serious illnesses and they become a comfort for them. Since I quilt, there are many things that quilters do but I know that others make lovely blankets, hats, etc. What about making valor blankets for returning vets or vets in VA hospitals? Something that I want to do someday when I get thru a lot of projects I am committed to doing for family and friends is making quilts for a couple of Indian reservations in South Dakota. Pine Ridge is the poorest place in all of the US. They are so very needy. I hope this helps you because you have helped many including me with your posts. Reet
Thank you so much for even more ideas!! I do try to be upbeat but I guess this disease has its way of blocking the light at the end of the tunnel some days. That is why I have enjoyed so much being a part of this group. Supporting each other is so very important because most people can't even come close to understanding what we go through. Well actually I can't even understand what we go through some days.
Take care,
reet said:
Gee Aunt Pearl, you always have such upbeat messaages and so giving of your knowledge that you caught me by surprise with your post. Soooo there you have it...you already are doing something when you post. You wheelchair blankets that you made can be used by so many besides nursing homes. What about blankets for newborns that don't have a lot? I heard about this in IL just before we moved to IN that there are many babies born to people who have very little or sometimes they are given to young children that are fighting serious illnesses and they become a comfort for them. Since I quilt, there are many things that quilters do but I know that others make lovely blankets, hats, etc. What about making valor blankets for returning vets or vets in VA hospitals? Something that I want to do someday when I get thru a lot of projects I am committed to doing for family and friends is making quilts for a couple of Indian reservations in South Dakota. Pine Ridge is the poorest place in all of the US. They are so very needy. I hope this helps you because you have helped many including me with your posts. Reet
I love that you like Christmas movies also. One of my favorites is Christmas in Connecticut. I love watching the old movies because I can still recognize the exact spot my dad would start laughing.
Take care,
athappensinvegas said:
I put on a favorite movie...Pride and Prejudice, or a romantic comedy. Surprisingly, regardless of the time of year Christmas movies make me happy. Turn off the computer, turn off the phone and lose myself in someone else's life for a while. My body rests, my endorphins increase and my stress level decreases.
sometimes I just have to take myself out of my life for a while, and it helps almost every time.
Do what works for you and remember that whatever you have to do to take care of you, is okay
Wow that sounds wonderful. I will know by the end of the month if one more surgery would do any good on my knees. Years ago I went to our YMCA for an arthritis class in the pool but I just had to quit because the water was too cold. I will certainly check to see if there is a physical rehab hospital in my area.
Hope you continue enjoying your special days at the pool.
Take care,
Ann A. said:
I go to the pool at a physical rehabilitation hospital. They have programs and activities for people in chairs. Even the pool has a ramp. It is a therapuetic pool. Water is 91-92 F. The staff has the training to transfer someone from a regular chair to a chair that can handle the water. It is a great place because everyone is dealing with something. Perhaps there is a similar place near you.
I have asked my kids to keep me near the pool. I really like my rehab hospital.
There are programs and activities out of the pool also.
You can also do things for the men and woman in the Military. My son is in the Army and what they put their bodies through to get ready for deployment is very harsh. Not to mention once they deploy what they physically, mentally and emotionally go through by putting their lives on the line. There are many ways to help get them through. Sending cards, care packages etc. Many come out with medical issues that they have for the rest of their lives. I never thought of them much until my son joined, now I know what they really go through and I hope everyone would be aware of them more. I know I am now. Feel better xox
auntpearl said:
Wow that sounds wonderful. I will know by the end of the month if one more surgery would do any good on my knees. Years ago I went to our YMCA for an arthritis class in the pool but I just had to quit because the water was too cold. I will certainly check to see if there is a physical rehab hospital in my area.
Hope you continue enjoying your special days at the pool.
Take care,
Ann A. said:
I go to the pool at a physical rehabilitation hospital. They have programs and activities for people in chairs. Even the pool has a ramp. It is a therapuetic pool. Water is 91-92 F. The staff has the training to transfer someone from a regular chair to a chair that can handle the water. It is a great place because everyone is dealing with something. Perhaps there is a similar place near you.
I have asked my kids to keep me near the pool. I really like my rehab hospital.
There are programs and activities out of the pool also.
Oh Alley not for once do we take for granted your son and all the other wonderful men and women serving our country. Bless each and every one of them. I used to be involved with a group that used to send paperbacks to our soldiers just so they could read and escape reality for a while. Two different times I was involved in creating care packages. We sent wet wipes, tooth paste and so on....things we take for granted. Also a big thing were phone cards so they could call their loved ones.
I am going to look on line and see if their is someone mailing cards to the soldiers. I could certainly handle that in my condition. I like to do a lot of hand made ones that look extra special and maybe would put a smile on their face.
Alley, I am glad that you brought this up about our military people. They have had their pay cut, those who are fighting in other countries or even trying to keep the peace do not have the proper equipment most of the time. I had sons in the military at one time and other family members that told me about things that were desperately needed and were not given. Now, it has become worse as even their meals have been cut. My dad was at Pearl Harbor when it was bombed and then I had two siblings in the service, a husband and brother in laws, two sons and I know what they went through and how much our military has lost in pay and benefits. It is horrid and anything we can do to make their life a little better is wonderful!
Reet, yes they have had their meal cut. The poor guys that are deployed only get feed 2x a day. What a disgrace!!!
reet said:
Alley, I am glad that you brought this up about our military people. They have had their pay cut, those who are fighting in other countries or even trying to keep the peace do not have the proper equipment most of the time. I had sons in the military at one time and other family members that told me about things that were desperately needed and were not given. Now, it has become worse as even their meals have been cut. My dad was at Pearl Harbor when it was bombed and then I had two siblings in the service, a husband and brother in laws, two sons and I know what they went through and how much our military has lost in pay and benefits. It is horrid and anything we can do to make their life a little better is wonderful!
Where I live I can contact the Arthritis or Lupus Foundations to get a list of therapeutic pools. I am sort of commenting to you and the person who suggested pool therapy to you. I understand about the cold pool -ugh that just makes one feel worse. Perhaps that is something you could get out and do. You sound like a very upbeat person and I commend you for having such a great outlook!
Thanks for your encouragement on my knees. I have had a total of seven surgeries on my knees in the last 4 years. This last correction on my left knee didn't take at all. I get through surgery and rehab just fine but the moment I think I might be okay I start having complications. Last two surgeries were to repair my slipping kneecap with torn ligaments and tendons. Of course this is after knee replacements on both knees. My last surgeon just told me he wished he could perform miracles but he couldn't so he said there was nothing else he could do. So I can't walk. I have an appointment with a special surgeon (my last hope) at the end of this month. At this point I just want to be out of the agonizing pain.
There is of course physical therapy in the pool at the rehab hospital. I have rehabbed three total knee replacement surgeries, a broken leg, back surgery, etc there. The surgeon must specify "aquatic therapy" on the pt order or you just get land therapy.When my son was in Iraq and when he was in Afghanistan he loved my stories about going to the pool.
I wish you the best with your knees. My prosthesis are working just fine - by the third one I knew how important it was for me to be as strong as possible before the surgery. So another thing that you can do for yourself is chair exercise.
I read... a lot. It helps me escape into another world and relax. Right now I'm in a mood to read all sorts of beach-y books. I just love the beach and the slow pace of life there. Right now, books are the closest I can get to the beach... until July! Depending on if I'm in a flare or not, I also quilt and lately I've been doing cross-stitch. I'm a chronic unfinished project maker so I always have something laying around to work on. When my husband was in the military, I would put together little packages for all the guys in his unit. They'd be little goody-bags for each guy/gal with candy, stress balls, etc. and then I'd include a football, frisbee, and some movies for the unit to use as a group. I try to go to the gym too and they have a therapy pool there, it's about 90 degrees and they have a special arthritis class. I haven't taken the class, but I'm going to try it in the winter if my school schedule permits since the cold really knocks me down.
I agree reading is so wonderful. I used to read book after book but for some reason after my mother died everything changed. I couldn't keep my mind on the book. I read two sentences and then had to read them over to comprehend and it became very frustrating. Hope I can get back into some day.
You sound like quite the talented person. Thanks for giving me so many ideas.
Take care,
Ballerina8876 said:
I read... a lot. It helps me escape into another world and relax. Right now I'm in a mood to read all sorts of beach-y books. I just love the beach and the slow pace of life there. Right now, books are the closest I can get to the beach... until July! Depending on if I'm in a flare or not, I also quilt and lately I've been doing cross-stitch. I'm a chronic unfinished project maker so I always have something laying around to work on. When my husband was in the military, I would put together little packages for all the guys in his unit. They'd be little goody-bags for each guy/gal with candy, stress balls, etc. and then I'd include a football, frisbee, and some movies for the unit to use as a group. I try to go to the gym too and they have a therapy pool there, it's about 90 degrees and they have a special arthritis class. I haven't taken the class, but I'm going to try it in the winter if my school schedule permits since the cold really knocks me down.
My opthomologist says that my eyes are fine and he has been watching them closely for about 10 years. BUT, I read a very little bit and I can no longer make out the words. Is this what happens on plaquenil? Does methotrexate do the same? One of my greatest fears is losing my eyesight.
I saw the doctor in April and the prescription for my glasses had little change so he said it wasn't enough to buy new glasses. I hadn't been reading at the time so I didn't realize this was happening. I just started reading again and now it isn't long at all before I have to stop. Even reading this it is blurry now. Sigh! I guess I have to find an eye doctor now already since I have moved out of state. I can't get my new PCP to call me back today either. I have been having back aches above the waist, ribs hurting, and not feeling right, low grade fever. I am concerned I might have a kidney infection along with this flare and I have never had this to deal with plus I have had doctors that always returned my calls the same day. Now I am into the week-end and I honestly don't know if this is something that I can let go until next week. Any ideas?