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Posted 10/28/2010 12:10 AM (GMT 0)
I'm am back but don't know how many of you remember me. Last time I was here my mom had just been dx with breast cancer. She had both breast removed and is undergoing chemo and radiation. I had to take a break, my mind was there with her. I also, 3 weeks ago, was dx with ra and OA after positive blood test and bone scans and x-rays, ordered by my new Rhuemy. He is great. Bed side manner is a little odd but he listened when i said it wasn't just Fibro it was more. I have been in so much pain after he gave me predisone...to try and bring down all the inflammation. I go to him Monday to discuss my RA treatment. I am scared and beside myself. It hasn't hit me yet, that i finally have a dx..part of the reason I haven't been here as well. My life will never be the same, nor will my children's. I am trying to figure out what meds are safer but effective. My RA dx is progressive as is the OA. Should I ask him for pain meds so I can keep working my wonderfull school job and be able to physically function for my 5 kids or wait to see how the meds affect me?

I hope everyone is doing well, I am sure I have missed so much. I have missed all of you and your support and feedback. Take care everyone and hope to hear from you. Thanks, Heather

Posted 10/28/2010 12:36 AM (GMT 0)
Hi Heather, I remember you well. Sorry to hear about your Mum, that must be so hard to go through with her. Breast cancer is such a nightmare, taking your "womanhood" or sense of self as well as dealing with the cancer. You must have had a really tough time with her.

Also sorry to hear about the RA and OA, I struggle with RA myself so any advice feel free to ask. Most of the meds are fairly toxic, unfortunately its very scary initially taking them, but once they work , you just sort of adjust, monitor the toxicity and carry on.

What is he going to put you on? Methotrexate is brilliant for taking down the inflammation but if its not enough there are some great biological meds out there now. Anyway its a huge adjustment to make so I won't bombard you with information. I remember being overloaded myself trying to take it all in. Plus there is a lot of grief involved in the loss of who you were. A massive amount of readjustment to take place when you realise your body can no longer do what it used to be able to.

My youngest child doesn't even remember me playing soccer with him anymore. I found that really heartbraking, his memory is of me in pain. My older kids have helped a lot, sometimes with huge complaints but we've all had to adjust.

Were you on anything for the fibro?

turn Well write again soon, lovely to hearfrom you again, golitho

Posted 10/28/2010 1:50 AM (GMT 0)
golitho,

I just wrote you back on the RA forum. He had mentioned the methotrexate. They actually called me after the bone scan with the results. I was originally scheduled to go back at the end of December but the nurse said he needed me in sooner so we could set up and discuss the treatment and mentioned the mx. I am on Cymbalta and Tramadol for the Fibro, still. You are very right about the feelings of loss. I don't feel like me anymore. I am happy I finally have answers, but I'm mad and sad and all of that as well. Do you use any special type of "helper's" like grabbers, openors or stuff like that to help you? My hands ,knees, and feet seem to be the worse. I have been dropping things, unable to open things, difficult to walk(I limp at this point). I joined a gym a couple of weeks back and have been going 4 days a week. It helps but I usually pay for it. I have been doing th water aerobics too. Thanks for your advice, I really need it right now. Heather

Posted 10/28/2010 3:55 PM (GMT 0)
Awe Heather,
so glad your back, but sorry you got a dx of RA, wow you've been thru a lot.
How's your Mother doing? Prayers to her and you. The water Aerobic sounds
great, and I might look into that soon.
Hope you can get a low pain day soon.
((((((((((((((((((((((((((((((Mama6)))))))))))))))))))))))))))))))))))
Prayers and Healing Hugz
Posted 10/28/2010 5:07 PM (GMT 0)
Heather,

Glad you are back! Sorry to hear about your mom....sending her healing thoughts! If I remember right we were kind of in the same boat before you left.....wondering if it was RA! Sorry to hear that yours was confirmed, but at least you know now and can get on the right meds to help the RA. I know that isn't much help, but my pain is sooo bad right now, I can hardly stand it! I am still waiting....I finally am going to see the new rheumy on February 9th! I also agree that the meds are scary.....but I have heard that once you get on the right combo of meds.....you do get some of your life back! Anyway...sending you love and hugs! Take care of you!

Hugs,
Beckey
Posted 10/28/2010 5:31 PM (GMT 0)
Heather, I remember you too. I'm glad you have a diagnosis now... and sorry, I have to ask, what does RA and OA stand for?
Sorry about your mother, that must be quite hard. I hope that things will get better for you in some way, now that you have at least been diganosed.
Posted 10/28/2010 8:44 PM (GMT 0)
Hi Heather and welcome back. I am glad to hear that your mom appears to be doing ok since her surgery. That has to be a huge relief for you and the family.

Best thing you can do about the RA dx is take a deep breath and start educating yourself about the disease. Its one of those diseases that can start with being mild to severe. My sister has RA and I know a fair amount about it because of helping her. I also have several friends with RA. Like Golitho said some of the newer drugs like the biologics have a list of potential side effects that scares a person to death. I have crohns disease and I have used these same biologics, but you have to keep in mind if one person has something happen and they report it then it has to listed as a side effect. The law requires that on any drug. But that does not mean it will happen to you. If we read the potential side effects on every drug we took even OTC we would be terrified to take anything, lol.

You may want to talk to the rheummy about how bad your pain is and he may give you something for pain to take until the RA meds kicks in and see how they work for you. Just remind him you work and need a clear head.The only thing my sister can afford is prednisone for her RA. She has lost use of her left arm because of it too. I wish she could get on some of the better medications but she flat cannot afford them.

Now that you have finally got your diagnosis the best thing to do is to arm yourself with good reliable information about RA and OA. Not much you can do about the OA, I have lots of what they call normal wear & tear because of OA, I have it bad in both knees and have had 5 knee surgeries, I am done and out on anymore knee surgery.

Take care and let us know what your rheummy has to say.
Posted 10/28/2010 10:13 PM (GMT 0)
It was so nice to hear from ALL of you!! It has been some what of a relief in knowing that my mom is through her surgery and now is just waiting to see how the radiation and chemo will do for her.Thank you all for the thoughts,prayers, and warm wishes for her. She is a strong person and didn't cry or complain until after the surgery was finally over. I am a lot like her, but not in that way. I wish i could be stronger. I know all of the complaining about the pain and inability to move like I could even 2 months ago, is wearing everyone down. I try not to focus on just that, but at the present time it feels as though it consumes a great deal of my life.

chartruex..RA is for Rhuematoid arthritis and OA is for Osteoarthritis. They are both progressive and have been quite degenerative, according to both my pr. dr and Rhuemy. Originally they didn't think I had OA because I am 35 and I don't know I guess it's just not as common. But x-rays showed I do, mainly in my spine and hips, which explains a lot to me.

Yes, just some pain relief or control would be amazing at this point. I am going to try and go the the water therapy tonight but I am always afraid, anymore, of overdoing. I need to go..this week I have put it off more than usual. I am experiencing very high pain days in all my joints and some of my tendons so maybe a good stretch in the pool would help. I hope you are all doing well and thanks for your support. Heather

 

Posted 10/28/2010 10:49 PM (GMT 0)
Hello mama6! Yes I too remember you! Its good to see you posting again, but sorry to hear of the health problems.

Hope you get to feeling better, and that they get you the right meds so you can carry on as best you can in life.

Take care,

SE wink
Posted 10/29/2010 1:36 AM (GMT 0)
SE,

So nice to hear from you!! I had wondered how you had been. I have thought of you all often and missed each of you. Thanks for the Welcome back!! You've always been such a great support. I hope you are doing well. I am hanging in as best as can be and will muttle through like everyone else. I can't wait to have a day that is less like those so recent. Take care and look forward to talking to you. Heather

Posted 10/29/2010 1:49 AM (GMT 0)
Ah big hugs Heather. That sure is a lot you have going on in your life. I pray that you have some relief very soon.

Prayers for you mom too. And remember, you are a strong and courageous woman. One day at a time hun.
Posted 10/29/2010 2:04 AM (GMT 0)

Suzane!!,

Nice to hear from you hon. Thank you for those words of encouragement. I am trying to stay strong and not be scared, but I am..scared that is. I think it will all end up alright, it's just the fear of the unknown..it might even be what has me "flared up" as well. I hope to talk to you again soon. Hope that you are feeling ok, and everything has settled down for you. Take care,

Heather

Posted 10/29/2010 5:02 AM (GMT 0)
Hi Mama6, my physio always tells me if it hurts stop! Go for the stretch not the pain, what hurts one week may be fine the next.

So see if that helps guide you. Also change tasks alot, so if you're on your feet walking, try washing dishes and standing or sitting on a high stool. I use splints for my wrists, especially for driving, but often if my wrists get sore. I have resting splints and working splints. I have raised my kitchen so I don't have to bend low anymore, got stuck a couple of times with the old knees and hips. I have jar opener devices and children who are very useful at times!

Methotrexate is quite hard on your system at first. I had to build up to the dose I'm on now20mg. I started at 10, then 15 for a while. I felt quite ill on it at first but now a few years on I don't even notice it anymore. Its a matter of weighing up the side effects vs the benefits, not an easy choice.

Lovely to have you back, golitho yeah

Posted 10/29/2010 1:19 PM (GMT 0)

golitho,

Good morning!!

where do you get the special devices from? I am in need of the splints and the openors and grabbers at this point. Once you have been on the methotrexate for as long as you have and built up to less side affects is the pain gone, or more manageable? Are you able to do some of the things you once could? Do you still have to take the pain meds? So many questions I know, sorry. This morning when I got up for work I had the most intense migraine. I think because I actually spent 30 minutes on the computer and hadn't, even at work, in a long time. Well since the last time i had been here. I think I need a different chair, or to limit my time and do something else in the meantime. I fly to California in a couple of weeks, and now I am even nervous having to sit on a plane for 6 hours, I know have painfull and stiff my body will be, uhggg. Any advice for that. Thanks again, Heather

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