I am trying,really trying to be positive | Arthritis Information

Hey guys...

I almost didn't post this, but I have to vent it somewhere.

I keep reading all these "stay positive" posts. I usually can stay positive. I hate to read posts where people are down, and try to find ways to lift their spirits.

I think RA and I have finally met head on. I have had RA since a teenager. I have said before, I think I am lucky in the fact that I have had it so long. I have learned how to work and raise my child with RA as a part of my life. But this year has been different. For the first time since I can remember, I have not had a break from the symptoms. Usually I'll have a period of feeling like dirt, but then we will tweak the meds and things will improve. This year, it just seems to be complication after complication. It just seems like a constant up hill battle. I am extremely upset about having jaw surgery over my Christmas break. I needed to weeks off from work, and we have 2 weeks off for the holidays. My son just turned 6, I only have so many more years of where he will believe in Santa. He will be spending the break at my parents house. Obviously Santa will find him there, but I want to be a part of it.

I sick and tired of this lung stuff, jaw stuff, eye complications, oh-and all the other joints as well. I hate talking to doctors more than I talk to some of my extended family members. I hate having a "cast of thousands" (doctors) and traveling down to Duke and having to take a day off from work. I hate having used up all my sick days, so every day off is without pay. I hate it when I come down with strep, or some other illness, and have to take another day off when it is not RA related. I hate the tons of copays that come with all the tests and appointments. I hate that I use up all my energy at work, so that I end up going to bed when I put down my son-and then end up getting behind in my grading, causing my stress. I hate that I feel like my son is not getting what he should be from me. I hate that my now ex-husband waltzes in and out a few times a year, never offers to help, and leaves a sad and frustrated kid behind.

Ok...I'm done. I just feel like I am stuck. I couldn't ask for better doctors. They work very well together. My pain dr. and my RD prescribed PT to help with the super tight neck/shoulder/upper back muscles due to the jaw joints breaking down. Hopefully the jaw surgery will relieve some of this. I have a repeat lung function test next month, so hopefully that will give us some more info regarding that issue.

There goes the bell...I wrote this during my planning period cause I am just so frustrated. Here come the darlings...time to learn about organelles.

Rebecca in all my time on here you have always been so upbeat to everyone and I feel so sad to see you having such a hard time.

Having surgery over the christmas period must be awful at any time but I know that having a little boy who loves santa , it must be heartbreaking, It must be a blessing to have your parents there to help him enjoy xmas..Maybe you two could do something special together after you have recovered, or before you go into surgery.

Life with RA gets unbearable sometimes and I can really see where you are coming from, it seems never ending but it will get better again, I thought when i was wheelchair bound that things would never get any better than that, but it did, its just hard pulling yourself out of the darkness .You can do it I promise

You are in my thoughts....xx

{{{{{REBECCA}}}}}. I am so sorry. Please know that you have my admiration for how you deal with all things and my best wishes or a moments respite.

Hugs, Rebecca. You my dear have more courage than just about anyone. Your son is very fortunate to have you as his mother, RA or not. He has a wonderful role model and will learn about courage first hand from his mom. Courage doesn't always wear a happy, positive face - that's just life. Hopefully surgery will help you start the new year off with less pain. Lindy

Rebecca, you always have a kind word for others and I have admired you so for your keep-on-going attitude. Hope you feel a little better after getting it out. Everyone hits the depths of despair sometimes and you have more reason than most because of the one-two punches you've been taking lately. As LinB says you are teaching your son every day how to face adversity. I can't help but think you have a break coming up soon. As Winston Churchill said, when you're going through hell, keep going. You can't stop now! Awww..... Rebecca I've been saying someone needs to cut you a break for a long time now! I feel powerless to do or say anything that will help you (except I'll add some more prayers for your strenth and endurance until a resolution can be found), but I'm glad you were able to get it all off your chest! Nobody can stay in a positive cycle forever when they are struggling like you are.

I second Bluehours sentiments from Churchill!

Rebecca, we don't know each other - I'm new here - but I am deeply touched by what you wrote. I can't do a thing to help you but I know who can, and I just passed a heartfelt message on your behalf.

Stay strong - this situation will get better.

Rascal

Rebecca.. I was saddened that you are feeling so badly and that life isn't giving you the break you so deserve....

I will keep your surgery in my thoughts for the best possible results

please know that your son will not remember that you were not there for this one christmas.. I assure you that all the wonderful times you have had together and will have together will override this one "missing" day ... it is something that you, more than he, will miss.... for that I am sorry...... Have another christmas celebration when you are well... he will love that just as much.

I'm glad you have here to vent .... we alll need an avenue. *hugs*

Rebecca I am new here too. Your son will grow into a fine young man knowing that his mom loves him, christmas is just an event , a healthy mom is for life.

My thoughts and prayers are with you

Rebecca - I know what you mean about everyone trying to find the positive side, but sometimes it just is not possible. With what you are going through and have been through recently , I can imagine how hard it is to keep teaching and taking care of you little guy. Obviously, we all just keep going in spite of everything - it's all we can do! I'm wondering if you could arrange a Christmas celebration after you recover and have a "Santa forgot a few things!" morning for your son. Maybe you could surprise him with a small decorated tree some Sunday morning after you have recovered and have a few presents there for him and a few for yourself - Santa can't forget Mom! Give it some thought. He'd be thrilled and feel very special to have had Santa come twice. Oh, Rebecca! I wish, I wish I could offer you something more than a good shoulder. This is the best place in the world to come for a good vent. I am sorry you have to deal with being away from your son at Christmas. I would venture to guess that this bothers you the most and certainly compounds how you feel about everything else. Do your parents have a laptop or PC with a web cam so you can be there that way? Your son loves, loves, loves you and the suggestions for another Christmas visit are a good one, one he won't ever forget!

No one can stay positive all the time and getting your frustrations out is nothing to shy away from. I believe we need to give in to a good cry/vent/kick/scream, to help rid yourself of the stress of the issue and create a better platform to take that leap you have to make. It sure doesn't help to keep that all tightly closed up in your chest. I did this prior to surgery and soon, I was choking on every word I tried to utter. You have had an awful road to walk this year and its not over yet, but through all that, you have been positive, encouraging others in dealing with their issues. Allow us to return the favor in helping you!

Let go of your guilt, let your emotions free, everything else will fall into place. You are in my thoughts, wishes, prayers and hums and you keep venting - we are listening!

HI Rebecca, my heart goes out to you, you are always so strong so don't beat yourself up about this, we all deserve to have our down days, they make the Up days more enjoyable! . Try and enjoy every moment with your son, I know we have to deal with little kids and pain together but make the absolute best of it, even when you are in bed, sit him next to you and do a jigsaw puzzle together, maybe start planning your christmas cards, and new decorations for the tree maybe. Perhaps you could have a practice Christmas dinner with him with bon bons and all, plus all the trimmings, candles etc, tell him it is for him to see what to do to help on Christmas Day while you are at the North Pole getting your christmas jaw present! He will be so excited and you can see that little face aglow with wonder and excitement, watch Polar Express together now, and maybe if you could get to the movies to see A Christmas Carol, tell him this is your Christmas together this year as Mummys jaw has to be fixed and Santa is bringing you the new jaw etc etc, best of luck, no one can make you feel better about Christmas Day but you will have all these special moments to get you through, lots of love and prayers from Janie.XX Keep strong honey, you are doing a great job! janiefx12009-11-04 18:44:33Thanks for the support guys. I am trying to find something good out of all this. I am sure a week from now, I'll be out of this slump. It just feels like everytime I turn around there is something else. ARGHI'll tell you what everyone else tells me... Your son will be a stronger, more compassionate person because you are his mother. Sometimes, on my better days, I can almost believe this. On my not so better days I wonder why my kids got such a raw deal. It sucks. You can't candy coat it all the time.
I'm sorry that things are so rough for you right now. You have every right to be angry.
A good friend once said to me "life is a war, not a picnic. Turning lemons into lemonade isn't a useful skill here"
Take care, leilaI understand the value of trying to stay positive, but sometimes things are hard and their is nothing wrong with acknowledging that. These things, all of them, and espeically all of them at the same time, gosh, who wouldn't get to a breaking point? Just don't give up hope. Yes, things are hard right now. But that doesn't mean it will always be. And you never know what this suffering is preparing you for. Someday you might be able to look back and say....yeah, it was hard, but in the end it was a blessing..... The hardest parts of life are often the greatest lessons too.Hi Rebecca, Keep the spirits up..
I had a glum day yesterday, today is a little better and tomorrow will see a further improvement.
Bump.....Talked to the RD who in turn talked to the pain dr. They took me off the pain patch, and back on perocet. It gives me a bit more energy, but a bit less pain control. Their inital plan was to keep the patch dose the same (25mcg) and take 5/500mg of perocet twice a day. I feel that would be too much-I need to stay clear headed to work and be with Nathan. So, they are letting me try the 7.5/500 mg percocet without the patch. I just hate the thought of taking more pain meds. I know, it's not a sign of weakness but I just can't wrap my head around it.

Continuing to send you my very best wishes and all my empathy. It stinks that you're in a circumstance where more pain relief is needed, but I'm glad that it's there for you since you are in that circumstance. Hopefully this will get you through till something better comes along.Hi Rebecca,

I hope even though it's only been a few days since posting this that your spirits are up just a little bit more today. I am so sorry you're feeling so awful physically and emotionally. I have had my moments too where you just feel so helpless , frustrated and feel as if no one can possibly understand what you're going through. You have so much on your plate , but you sound like such a strong woman and are doing the very best that you can for your little guy and yourself. Even though I feel like giving up at times, when I read posts like yours it makes me realize everyone on here is going through their own troubles. Sometimes you do just need to vent, get it all out there and know that others are on your side fighting for you and wishing you all the best and DO understand. Don't be too hard on yourself and take it one day at a time...

Big hugs!!!

Kelly

Kelly, I totally felt like I was reading one of my posts when I read yours. I am still trying to find a way to sort all this out. My parents are keeping Nathan tonight. He will get spoiled rotten-nothing beats a sleepover at the grandparents. I am very tired, but I am going to meet a group of friends for dinner. I have been close to calling and canceling, but I think a few hours of laughing will do some good. I have a TON of grading to do this weekend. This is one of the downsides of middle school. Way too many students. I am behind in the grading cause I have been do tired lately. I have to get it done. Nathan has a swim meet at Va Tech tomorrow so I plan on finding a quite place to sit in grade inbetween races.

Thanks for all your support...Obviously you can't change the situation, but you totally "get it".

Hey Rebecca, I hope all is well with you. Did you get all caught up on your grading? How about some rest, did you get any of that too? How did the future Olympian do? I hope all is well with you, or at least you are not feeling so much pressure. Take care.

Thanks for your concern Waddie...

Honestly, things are not any better. I did manage to finish grading the rough drafts my AP kids wrote for their science fair research papers. Thank goodness I only have 2 ap classes, 41 kids total. My other classes don't have science fair projects---bit of a break there.

But, got awful news today. My friend lost his wife this morning. Very sad-they are both only 28yrs old. Sadder still, they had only been married 3 weeks. They think it was a blood clot. Just heartbreaking. So, I certainly feel that I have no right to complain. I am just sick about it. Why is this stuff allowed to happen...

OMG that's horrible! That is SO sad.

No matter how badly we feel or how many problems we have.....there's still someone out there with a tragedy on his hands.

It puts things in perspective.

Sam12342009-11-11 22:47:44This is sad news, Rebecca. I am sorry. I don't know why these things happen and why it seems when it rains, it pours. Such a waste! I'm so sorry rebecca! How awful!
I was so hoping you were having better days..
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