Hi AnnA., well you know that sometimes we HAVE TO take them , but it also okay !!! Today i met a friend of my daughter that has LUPUS , and we talked for a very long time . She has stopped also taking her meds., which i asked : How do you feeel ? Her reply was i feel good , really she says " I don't feel no different than when i was taking them expect that my pain my last a little longer than normal . " But other than that she says, she has been very well with out withdrawal problems. It was so nice to know that there are other that share just about the same things about this LPUS stuff and go through things like me - Personally !!! Well get some rest and fight , and relaxe.....Beverly L.
Ann A. said:
I enjoyed mother's day with my two children and six grandchildren. But the dinner was at my son's house. Between the ride there and back and playing with the younger grandchildren,, the pain level in right leg went through the roof. So, I took hydrocodone yesterday. I do plan to take more today.
fighter said:
OMG, that will give you a lupus flare for sure(lol)
Well Ann, hope that you get better soon , my left leg it like yours -HURT !!! relaxe ... Beverly L.
Ann A. said:
Hey Fighter, I left out the "not" on Monday. I took the opiate on Sunday but I have not taken anymore. When I am not very active the Tyelenol and the topical are enough. I am still tryiing to rehab my right leg so I have to tolerate some discomfort. We will see how the rest of the week goesWell Ann plea
Ann, we of all people hold no judgement. Dealing with pain is individual and always changing. Just like our disease. Please don't kick yourself and stay strong! Love and HUGS, Julie ps. keep the online diary of your progress going, I believe you have followers (like me) It's of interest to all of us. Thanks for starting the thread, Love Julie
Thanks - I am proud of myself for using my medications appropriately. I am excited about the Pennsaid. Much of my pain comes from inflammatory conditions. Neither acetaminophen nor codeine have anti-inflammatory capacities. I can't take oral NSAIDs because after so many years they make my ulcers flare up immediately. So, the ability to apply a topical non steroidal anti-inflammatory medication right where it hurts seems promising. And I have not yet given up hope that the rehab will help that right leg. I think I am on the right track. OK so I am a little nuts - but an old jingle just popped into my head "Weebles wobble but they don't fall down."
No problem Ann, that's what we are here for - to support and lift each other up when we arefeeeling down and mostly in pain .... I sometimes have to read over my messages before i send them to make sure all y words are there ,because i think faster tan i type ... LOL (sometimes!!! ). My kids have a ball laughing when i write them notes , they say: Mom what in the world are you talking about ?? then we just sart a laughing session , it is very funny at times to know that our brains work faster than our hands . Jehovah is GREAT !!! But it's okay we all got the message!! Once again take care and most of all rest , also keep us posted .. Beverly L.
Ann A. said:
Thanks Beverly Darling,
I am recuperating well from my back surgery and I am rehabbing my right leg (it is shorter, smaller, and weaker than the left) and I have not taken any of the opiates since Sunday. I am doing well. Thanks you so much. I left out a "Not" in the message.
Beverly L. said:
Hi AnnA., well you know that sometimes we HAVE TO take them , but it also okay !!! Today i met a friend of my daughter that has LUPUS , and we talked for a very long time . She has stopped also taking her meds., which i asked : How do you feeel ? Her reply was i feel good , really she says " I don't feel no different than when i was taking them expect that my pain my last a little longer than normal . " But other than that she says, she has been very well with out withdrawal problems. It was so nice to know that there are other that share just about the same things about this LPUS stuff and go through things like me - Personally !!! Well get some rest and fight , and relaxe.....Beverly L.
Ann A. said:
I enjoyed mother's day with my two children and six grandchildren. But the dinner was at my son's house. Between the ride there and back and playing with the younger grandchildren,, the pain level in right leg went through the roof. So, I took hydrocodone yesterday. I do plan to take more today.
fighter said:
OMG, that will give you a lupus flare for sure(lol)
Oh boy !! that sounds like you were having a terrible day , well that moment ended as a terrible day !!! I've have fell out of the bed twice!!! The very first time ,i thought that someone had came and pushed me out of the bed . The second time my daughter heard the fall and came running , turing on all the lights scared me , and i asked her what happened , and why was she just standing there ?? She says, " You fell out the bed again ad we both started laughing , but 2days later my body was in soooooooooooo much pain , i could not move , the kids and my granddaughter had to help me walk around , it was the most craziest time i've experienced since this Living with LUPUS stuff came about !! Now i try to sleep more in the bed ( the middle) but for reason am always on the edge when i wake up . Funny how we sleep isn't ?? Sometimes my grandkids want to sleep with me and they are all over the bed , the 1year old wants to get right up under me and throw him arms and legs completely over me , while his sister throws her arms over him . So picture me moving them all nite long !!! LOL But i LOVE IT at times!!!! When the morning comes and they get up, i sleep as if i had not slept in days or years!!! This only take place on SOME weekends . Oh yeah, the 1year old wakes up and comes to my room and get into my bed after his sister goes to school in the mornings and he sleep nowhere near me (i don't understand that at all ) , sometimes i don't even know that he is in the bed until i turn over or he moves . It makes me happy to know that they rather sleep with me than in their own beds , my kids were totally like this (exspecially their mother , she would not sleep in her bed for nothing in the world, until she turned 4 or 5years old. But it was fun many nites.BUT for us, falling seems to come and go, and leave alot of unwanted PAIN !!! But we survive it some how -smile !!! I try not to walk to fast so that i won't stummble , but it's like i get 2 left feet at moments.. LOL But i don't fall,i stop and look around as if someone is there walking next to me . It's funny . Well hope that this is cmforting to you to know that you are not the only one whom has had a fall and laugh if it is funny -because i did !!! talk with you later - remember to get some REST and feel better ... Beverly L.
Ann A. said:
I am getting ready for bed. I did not take any opiates today. I know what it feels like to fall down. In
May of 2009, the morning that my kidney surgery was scheduled, I broke my leg. I had already taken the two Labradors to board. My next door neighbor had said goodbye and left on a two week vacation. I was determined to get some flowers in the ground before I went to the hospital. I was in the backyard near the back fence, planting Vinca Pacifica Halo. I really do have an affection for periwinkle of all varieties. I realized that I had been out there puttering in the garden too long. I didn't notice that my right foot was in a hole over which ground cover had grown (my big boy Flax loves to dig), I turned to rush back to the house. As my arms kept my face from hitting the ground, I heard my fibula break. That is an awful sound. I rested on the ground for a minute thinking about what I was going to do next - and yes, I laughed and said to myself, "I've fallen and I can't get up." But there was only one thing to do.
So, I crawled from the back fence to the deck, up the stairs, and into the house. I crawled to the closet in the front hallway and got a crutch. Then I got two hydrocodone from the medicine cabinet, an ice pack from the freezer, a water bottle from the fridge, put them all in the pocket of my gardening apron, and hobbled to a chair from which I called my daughter. My kidney surgery had to be postponed for three weeks. Recuperating from kidney surgery while using a crutch because my leg was broken, that was a difficult and painful time.
Hi Ann.A, how are you doing? How's the pain, remember do what you need to do to get some relief, I am here if you need to vent or just talk. Many blessings and hugs. Any news on Janice yet, that you know of?
It sounds like you've lived a good full life...till things came fulling up on you like a good many of us but i must admire you, your still fighting and keeping strong.
Now that's something we all should look upon will and determination.
sometimes i feel we are little white mice but we wre still here ,GOD FIRST and the ability to have faith and they havenot had these such meds since 50years ago and now they do .life is so ironic, we take these meds i guess in good faith because we are still here,we all have to live by our own choices in life. everyones body is different and nobody knows yours like you.so you have to live with your choices.Lia.take care of yourself.
you are still here after 10 or more years. i just started taking meds for hypertension, and lupus,soi many arenot here we didnt ask for this disease, so many times i ask why me i am still grieving ,but i know it is not going away,but everyday i get a little bit of strength and knowledge.I miss working i am on a short term loa if needed i can go on longterm loa,working all my life this disease isnt going to get the best of me as of right now,I wanna live as long as God will allow me.you take care and be safe.
That's good news since Mother day you are doing so well and with all my heart i hope it keeps wotrking that way for you plus being so positive mentally helps in so many ways, although your in discomfort in other's.
A large hug to you my dear friend xxx
Ann A. said:
Thanks Tez,
I have not taken any of the hydrocodone since mother's day. I am looking forward to the next stage in my life and doing everything that I can do to be ready for it.
Yes it really does. But they are going to be moving into their own home by the weekend and am going to miss that but (maybe ) my daughter will let them stay -hopefuuly overnite sometimes !!! Even torugh they are going to on another part of the couny ( ahout 45mins. away form here i live, but that's fine if they don't get by to see / spend the nite with me ,thy will remember (well my granddaughter will , she is 6 and my grandson is 1). Am feling a little sad , but its something that has tobe done .... Beverly L.
Ann A. said:
It feels so good to have a grandkid in the bed. You are so lucky!!!
That's the spirit lia , Keep that up andyou will .... Beverly L.
lia nuriddin said:
you are still here after 10 or more years. i just started taking meds for hypertension, and lupus,soi many arenot here we didnt ask for this disease, so many times i ask why me i am still grieving ,but i know it is not going away,but everyday i get a little bit of strength and knowledge.I miss working i am on a short term loa if needed i can go on longterm loa,working all my life this disease isnt going to get the best of me as of right now,I wanna live as long as God will allow me.you take care and be safe.
That's funny !!! she vist the toys .. LOL, well my 6 year grandaughter is something else she always on her Ipad , which is great cause she has tones of actvites on it , an sometimes she don't bothered with anyone But hay !! still to say i will miss those nite sometimes , andout besides that i will be abe to sleep more at nite (hopeflly) -smile.... Beverly L.
Ann A. said:
Still no hydrocodone. I celebrate the fact that I am still here. I try to live by the motto "Every day above ground is a good day." I am not always successful with that. But I do think about my friends who are no longer above ground. My two best friends from childhood are both dead and neither of them had lupus - they were the "healthy" children. Several of my "healthy" friends from adulthood are also no longer above ground. But I am still here after all of these years.
Today grandchildren 5 and 6 are coming to visit. Five is three years old and six is two months old. I know that their lives are better with me around than they would be without me. I also know that my life is better with them than without them. Beverly they don't live with me but if I am in the bed when they come, they will definitely climb in with me. I feel pretty good today so we will hang out in the family room so that five can play with her toys. I always tell that she didn't come to visit me, she just came to visit the toys at my house.
Awesome AnnA., I am proud of you, and I do not judge you in any way. Like I said you do what you need to do, and I support whatever that is. This is your body and no body knows better than you, and to get close to that beautiful bundle of joy ( the two month old) I would be willing to do the same. I think you are doing a great job with the reduction of the pain medication, you have come a long way, just dont push yourself, you are not a superwoman, and I dont expect you to try to be one when it comes to the pain, you are only human, and thats what I love about. Stay awsome as always? Many blessings and hugs
Hi, that's how my granddaughter Ipad is, she has so many games on it also, but it keeps her busy. Well hope that you are feeling good today.... talk with you later Beverly L.
Ann A. said:
The three year old is a real Mama baby. She won't even stay while her Mom goes to the pharmacy for me. She too loves tablet computers. She and her six year old cousin have downloaded so many games on my tablet that I play them. Beverly L. said:
Yes it really does. But they are going to be moving into their own home by the weekend and am going to miss that but (maybe ) my daughter will let them stay -hopefuuly overnite sometimes !!! Even torugh they are going to on another part of the couny ( ahout 45mins. away form here i live, but that's fine if they don't get by to see / spend the nite with me ,thy will remember (well my granddaughter will , she is 6 and my grandson is 1). Am feling a little sad , but its something that has tobe done .... Beverly L.
Ann A. said:
It feels so good to have a grandkid in the bed. You are so lucky!!!
OMG!! She is beautiful, and she does wonders for the shades. I am so glad that you are making such good progress, and please dont worry about being protected, God has protected you all these years, he is not about to let you down now. But I do know how you feel, I have a pitt bull, and he is not the viscious dog some people make theirs to be. He has never bitten anyone, and he loves people, they just get afraid, cause he loves to jump on you and lick you, and I understand their fear. If you didn't raise him or grow up around him, you may very well feel afraid. But he actually my big baby. Enjoy your walk today, and I hope you become inspired to take longer walks, but be as careful about people as your lab was. Many blessings and hugs
Ann A. said:
Hey Fighter Angel,
Thank you so much for your support. I understand that you can only be super if the planet you were born on explodes and your parents send you off to another planet in a tiny space ship (that will make sense if you like Superman). Today, I actually went for a short walk outside. I walked from my house down to the corner and back again - it's a long block. I have lot's of problems with walking. Some of them are physical but some of the are very emotional. I have chronic post traumatic stress disorder. One of my major symptoms is "hypervigilance." Being hypervigilant interferes with sleep and it makes you avoid situations that can be considered dangerous (and a hypervigilant person sees the dangers that other people miss).
The most effective treatment for my hypervigilance has always been a couple of 90lb dogs. When a noise or a smell would wake me up at night I would look at how the dogs responded. If they didn't think it was anything to worry about, then I relaxed a little. When we walked in the nearby park we would meet the same people week after week, year after year. There were some people that my old girl would let walk right up on me. There were other people that even though we encountered them on every walk in that park for 8 years, she just didn't like them. She would start that growl that Labs can do way down in their chests even before those people were visible. My attitude was always, I don't know why my dog don't like you but let's be clear on one thing. If she don't like you, I don't like you either. And my hyperactive boy was our enforcer. My middle grandkids once asked their mother if she though Flax would protect me. She laughed and told them that big hyperactive dog knocks her friends down when he is happy.
So going for a walk without my dogs makes me feel very vulnerable and unprotected. It also makes me miss them so very much. But today, after I had finished studying, I did not take a hydrocodone and a nap. I took a walk.
You will enjoy this. I saw those sunglasses on anther baby in a supermarket. I could hardly wait to get back home and order a pair for Asmaa Maryam - whom her sister calls Mary UM.