Hi! I'm Nana. This is my first post. I do not do well with computers and I don't understand the abbreviations used in text messaging. I was diagnosed with OA about 15 years ago, and RA about 6 years ago. I have never tried to talk to others with these diseases but I have reached the point, I feel only someone who is living it, understands. I am having a RA "flare up", and the usual Prednisone dose pack,(1 more day), hasn't touched it. Any suggestions??
Hi Nana, and welcome! If there's any abbreviations you don't understand, just ask. Or you can look at a recent post where we explained some abbreviations...I'll bump it up for you (which means adding a reply so it comes to the top of the list).
I'm so sorry you're in pain and the pred pack isn't helping. What other medications are you on? Do you see a rheumatologist regularly? I would contact the doctor first to see what they suggest.
InnerGlow, thank you for responding to my post. I do see a Rheumatologist and I am on Arava, Celebrex, Methotrexate, and Fosamax+D,(osteoporosis). I tried one of the daily injectables, but it didn't work, for me. One of the other injectables, I can't use, because of my history with cancer, times 4. Thanks for being kind. My family does not accept that I have this disease. I am suppose to be able to keep going and doing the things I've awlays done. I just can't, anymore. I just don't know what to do.
I am so sorry about your family. The ones around us can make our lives so much easier or so much more difficult. Have you taken a look at the "spoon theory" ( http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonT heory.pdf) and shown it to you family? Sometimes it can help, but sometimes nothing gets through.
The one thing you probably need more than anything is rest. But I know if your family doesn't support that (and even if they do) it can be hard to sit and "do nothing".
Also you might try a good bath or soak. I'm having quite a bit of trouble myself these days...my RA isn't under control yet, and right now lots of pred plus lots of pain killers aren't really doing anything.
I hope someone else will chime in with some good ideas.
InnerGlow, I am sorry you are also having pain. The pain meds I have do not touch the pain, plus they are addictive. If they don't help the pain, I'm not going to take them, just for the sake of "popping" some pills! I have tried them, over and over. No more. I have almost become a hermit, living wrapped up in a blanket, inside. One of our children, who lives in a different city, but doesn't accept me having RA, wants us to babysit our 6 year old Grandchild, soon. I would like to do that, except I am expected to take our Grandchild to a local theme park. I have been limping for two weeks, because of the pain in my foot. If I say I can't take the Grandchild to the theme park, there is no telling when I will be able to see my Grandchild, again. If I want to see my Grandchild, I have to go to the theme park, no matter how much pain I may be in. I wish families would realize people DO NOT CHOOSE to have RA!! I wish families would LEARN about RA. I have printed out material and my family will not not even read it.Hi Nana and Welcome.
I am still new here myself and everyone seems so nice. So far I am loving it here. Addicted it is. And someone always seems to know just the right answer and if not they are full of support.
I am so sorry to hear about your pain. And sorry the family doesn't understand. But you hang in there and don't give up. I know what you mean about expecting to be able to do things with your grandchildren as I have a GS and am expected too. Plus I have a 6 year old who can't understand. But that's okay cuz he is only 6 not an adult.
Good luck to you and it's nice to meet you.
I'm sorry but you will have to risk hurting your family's feelings in order to help yourself. They will understand someday that you aren't well! They only way my family 'got it' was when we were talking I'd say, "dad had to hold the pill, put it on my tongue and hold the glass of water to my mouth for me to drink it!!"" I couldn't hold my own glass, fork, cut my own meat, get up and down the stairs without turning sideways, into and out of the shower without a chair,......they finally understood! when I put it in these everyday terms!!
MY daughter-in-law made a crack about how if I'd just try some 'diet' she thought it would help me. Diet will not cure this! according to my well educated doc that I trust. I'm on meds that cost medicare 00 a month (my cost 0)!! It is hurtful when people close to you don't understand the pain.
On the short term, I'd be begging the doc for MORE prednisone. I'd have already phoned his/her office and been sitting on the steps waiting to see him!!(even if I had to hobble in, they seem to need to see you for themselves describing the screaming pain doesn't do it!!) My doctor ALWAYS knew exactly how I felt. He lived the nightmare right along with me! His staff are some of the sweetest people in my life! They care. I hope you have a great doctor?????
We here know how stress can cause us flares, so worrying about not being able to see your little grandchild if you don't do what is 'expected' of you is very cruel. You need to be able to give the child what you can give ......period. Your love, an afternoon with a fun movie, just being with you!! You must tell them you are scared, hurting so badly you can't go to the theme park right now, and that you'll do it if and when you feel better!! What if you went there and you had to go back home because you felt so awful, etc. that would not be a good memory for a child!
Please keep writing as this is THE best place to pour your heart out. People really do understand, really do care. (I know because when I joined in February I could barely hit the KEYs, they were so helpful) Lynda
Hi Nana-
I am a grandmother also, since last October. My sons don't really understand my limitations because they all live away from here and don't see me every day. When I had foot surgery 6 weeks ago, I sent them and my daughter-in-law photos of my foot with 6 incisions and bruises and swelling. I did that so that they would understand the magnitude of the surgery and why my recovery will be so loooooooonnnnnggg! They are young and very active and limits are beyond their comprehension.
It might be that some of your family is in denial, also. They may not be able to confront the fact that you have a serious disease- or 2!
Anyway, see if you can rent or borrow a motorize wheel chair or something else that would enable you to go around the park. Also, you could take somebody who is more able to walk with you. You can sit when you need it and let the other person stand in line and take the rides while you watch, take photos, and wave.
Lynne
Shykymom, thank you for supporting me. So far, InnerGlow and you are the only ones, but this is my first day. I will not give up. I can't. I've never reached out to people, before. I don't understand computers well, but I'm trying. I found where someone else had asked about all the abbreviations and people told him what a lot of them meant. I printed those pages out. OMG,(trying to be comical), LOL, used to mean "lots of love"!! Thank you for your reply!Hi Nana, welcome.
I will be a grandma in about 2 weeks and I worry about having the same problems. My DIL (daughter-in-law,see,now you know one abbreviation
ZoeJoy's idea seems like a good one to me. I hope you can work something out.
Hope to get to know you better.
Oh Nana, I'm so sorry you are having such a hard time. I think the worst of it must be having a family that doesn't understand. It sounds like you are married, from your posts. Does your husband understand what you are going through?
I also have OA and RA and I do know how dramatically it can change your life. I am fortunate to have a husband and children who do understand that I am ill and cannot do all the things I used to do. My husband goes to all my appointments with me. And anytime I have tests or procedures, he is right there beside me.
There is one thing I would suggest very strongly, and that is to have your husband accompany you to some (or all) of your doctor visits. Your children must also understand that you are just not physically able to do some of the things you want to do. I'm sure you would love to be able to take your grandchild someplace special, but try to get the parents to understand that your body simply will not permit you to do so. Tell them you really need their understanding, now, because you are in severe pain all the time, and you need them to accept how you are and show some compassion. Just as you would do for them if they were ill.
I have grandchildren, too. The oldest is 17 and when she was little, I was still able to take care of her and run a business at the same time. I think it has been harder for me to accept, than for my children to accept that I am much more limited now. My 2 year old granddaughter comes over with the kids and sometimes, if my husband is home, we will babysit for an afternoon or evening.
Kids are happy to be with their grandparents, even if they don't go anywhere. Like Lynda said, get a movie that would be fun for the child. You can sit together and eat popcorn and watch movies together and make memories just being together. My little granddaughter LOVES Disney movies. We have several and she will pick out what she wants to watch. Or have her draw you a picture, or maybe play a simple board game with her.
Yes, it is very hard for our loved ones to accept that we are not able to do everything we used to do. I used to take care of everybody, that was what I enjoyed, being needed. But my body won't allow it any longer. My husband does all our cooking and never complains. He said I took care of him for over 20 years, it is his turn to take care of me. I would love to cook again. And crochet and play my guitar and a hundred other things that I always enjoyed. But sometimes, life throws obstacles in our way, and we must find other interests that we CAN do.
Lynda also said you should call your doctor and I absolutely agree! If the meds you are on are not helping you, then let the doctor know, and they can prescribe something else for you. I would also ask about an anti depressant, as chronic illness often causes depression. I would guess that 75% of us on this board are on them.
Good luck, Sweetie. Please let us know how things are going for you. Hopefully, your kids will understand that the theme park is out, and bring the child over anyway, to spend time with you.
Be well. Gentle hugs,
Nini
Nini,I can't believe the support I am finding here. I've given my family over 40 years of love,support and care, in any situation, but today I have found more support for RA and OA than I have from my family. Thank you, to everyone!!!! Nana.
Nana,
Welcome!!!
I Know my kids (7,5 and 2) love more than anything to sit and chat and CUDDLE their grandparents. They don't need to go anywhere no matter how active they are.
Your grandkids will love you for sure - and CUDDLES may be good for you to relax with them!
sorry I don't have any answers for you. I don't have any condition but more 7yo daughter has 'something' and people don't understand that either!
stick around this forum - people here are so supportive ans I am sure you will gain a LOT form them all.
Hi Nana,
First, Welcome! I too am trying to get out of a long big flare and wanted to mention that my Dr. gave me Cortisone and Toradol injections in my bum. I'll know soon if they do the trick and he said I can do it again in a month if they don't. The Toradol is an anti-inflam that has helped some. Just a thought you might consider.
Take care,
[QUOTE=Nana]Shykymom, thank you for supporting me. So far, InnerGlow and you are the only ones, but this is my first day. I will not give up. I can't. I've never reached out to people, before. I don't understand computers well, but I'm trying. I found where someone else had asked about all the abbreviations and people told him what a lot of them meant. I printed those pages out. OMG,(trying to be comical), LOL, used to mean "lots of love"!! Thank you for your reply![/QUOTE]it makes me sad that you took the time to print out info for your children and they chose not to read it, or are in denial. Grandparents are so important to children - Going to my Grandma's house seemed so magical with special treats and no bedtimes. I hope they come around soon because punishing you and your grandson because you cannot take him to a theme park seems a bit selfish.
Have you seen your Rheumy lately? It might be time to tweak your meds a bit if this recent flare doesn't seem to be letting up. As we all know, stress is very bad for us and we have to do our best to keep it down. I wish I knew how, LOL, but I keep trying. Hopefully things will get better for you and your children will come to understand a bit better....
Hugs!!!
Deb
Hi Nana, glad you found this site. Lots of caring, knowledgeable people come here for advice and support.
I hope your family will come to terms with your illness and get on board. As far as your grandchild, my fondest memory of mine were just sitting on her lap and reading books, or playing card games, baking or cooking. I would as to speak to your grandchild and explain that you aren't feeling well enough to go to theme park but you can do other things that are lots of fun and just being together and giving them your undivided attention is the best way to spend the day.
I remember my grandma taught so many things. Manners, how to cook, sew, and most of all how to laugh and love.
Things will work out, you'll figure it out.