I have always always believed in the adage, "And this too shall pass..." but right now, honestly I am truly and really doubting it.
I think this flare is actually getting worse.
Is that possible?
Yesterday and today. My back feels like it's broken. My hips feel completely dislocated. My pain medication does not seem to be kicking it in anyway although I would expect it to even start to do so until probably Thursday of next week.
I mean, I have endured some unbelievable pain in the past ten years with RA but geez, this is so beyond anything I have yet experienced.
I know I'm strong and I know I am capable of enduring a lot but even for me, I am so maxing out here.
It's as if nothing is capable of breaking this pain cycle and I damn well need it broken. And I am so trying to stay out of hospital as Nevie so needs my at home. It's just too tough on her, if Mummy goes in. I want to keep her settled and stable.
I just really need a bloody vent because I have so had it here.
And I know I have to go on. There is no other choice but to endure and go through.
Practically there is not a lot to be done except find the right pain med combo to break the cycle and continue to wait for the Rituxan to jolly well kick in.
It makes me feel really powerless and helpless to not be able to 'do' something to 'fix' it but here is where acceptance and letting go come in. And, yes usually I am good at that, so right now I am saying to myself, "Cordy, you're in a lot a pain right now, just get through the next moment, woman."
Emotionally and mentally, I honestly need support and I am asking for it because it is the only way I will seriously get through this.
I am in this dark tunnel and I just don't see any light at the moment in terms of my physical self. It just seems to be getting worse and worse. And finding my way through in the dark is getting harder and harder.
I really need you guys with me here to help me find my way through this darkness because my sunny outlook and sense of humour could definitely fail if I try to do this alone. I just don't have the choice.
I am sorry if I sound depressed but I probably am and I think when you are in the amount of pain I am, depression is part of the deal. I am so for whining but I really need to vent and debrief because I can do this alone. I can't.
Oh Hunny!!!!
I'm not sure what your options are here......would anyone be able to watch the little tyke for a few days? You may need to be admitted, so they can get your pain REALLY under control, and pump you with all the meds you need to get this thing licked. You sound like you're where Lizzie was, and that's about all they could do to get her back in the right direction. I know that's a TERRIBLY daunting idea, but think long term here - it may well be for the best. You just CAN'T keep going downhill, then where would Neve be??
Just think about it hun. I wish there was more I could do for you.
WE LOVE YOU!!!!!!
Wish it were possible to send you about 20 of my 5mg prednisone to carry you till your flare dies down. Can you ask your doc for a pred pac? LEV Yea I agree w/ Katie. See if someone can watch the munchkins and see about being admitted. You may need some heavy duty steroids to get you over this flare right now. Im sorry I dont have more to offer you. BIG gentle hugs to you sweetie Cordy, you don't have to do this alone. We're hurting along with you, wishing we could do something to help and make you feel better. You've gotten some good advice. You seem to put yourself last, after everything else is taken care of. The mark of a strong woman, to be sure, but sometimes YOU have to come first so that you can get better. Then you can take care of business at home again. It's hard for strong people to let others take over, but you sound like you really need some help right now. I'm not sure if you need more advice or just a hug, but we're here for you and will try to give you what you need. I'm glad you came to us for help. And now, come here, I want to give you a hug. Stepping forward, grabbing Cordy, patting her back and hugging, but not too hard! Cordelia, I am so sorry for all the pain you are in. I wish I could beat the living crap out of this RA flare for you. Life can be so fricking unfair sometimes. I hate when pain becomes so overwhelming you just cannot get back over the edge of the precipice. I so wish you would consider going in for just a couple of days to get things under control. Is there a way under your healthcare system that you could have a visiting nurse give you IV pain meds at home for a couple of days? You might need someone to be with you to help w/Nevie, but at least she would not be uprooted from home. You probably don't need more suggestions, but rant away dear, I wish so much for your pain to ease. Crispy I don't know what to say except we're here if you need us and just keep hanging on. Hugs, Pip Hi Cordy, I have nothing to add. I just wanted to let you know that I'm here praying for some relief for you and I'm sending love your way. Hugs, Steph Cordelia, I am so sorry. I am praying your pain will be relieved soon. Sometimes you just need to let yourself be taken care of for a while. Of course I don't know your situation, but I know kids are usually more resilient than we think. Hugs, Laker ((((((((((((((Cordy)))))))))) I am so sorry it hurts so bad if I had a wand I would make all the pain disappear for you.
And failing all else, try to find just a little bit of distraction for yourself while you wait for this to pass. I know that sounds trivial, but a movie on tv, a good magazine or whatever you can find to let your mind relax for a bit might do some good. Big hugs! Oh hunny rant away!!! You may rant here, you may e-mail me rants, you may leave me offline messages, rant your little heart out!!! I understand what you're saying. It's so hard, to be so very out of control. The last thing you want to do, is give up the little control you DO have. It's very common for people with chronic pain, and long term diseases. And ESPECIALLY so for people who are as head strong and independant as you are! It's such a blow for your body to be telling you what your limits are, while your mind remains inside, stuck, boxed in, and trapped. Perhaps all you need is to vent here, call someone when you need to, and do your best at riding out the next few days. But if it gets to be too much, please, do think of yourself for once. :) And you know, if pred isn't your thing (and it isn't A LOT of peoples) maybe you could ask about cortisone? That's what we switched Justin to, and he's had better results with it. I don't see any reason why it can't be tried. You're just reaching for help right now, and I don't think they should close any open window of opportunity. Even if it isn't a "traditional" med, I really think you're beyond "traditional" at this point!! So hang in there sweetie, and let us be a shoulder.
I wish you the best, hang in there! Cortisone just isn't used as much. Typically it doesn't work as well. But ya know, there's always exceptions to the rule. Hello - Lookie Justin! LOL I mean, if you're this bad off, what can it hurt????? Right? Venting can be hard....until you hit that wall. You know that one where you're going to punch THROUGH the damn wall unless something or someone gives out and you get some relief?
Much love! Stubbornness is an absolute must to survive, and we're all survivors here!
A pred pack, or medrol pack, is just a little cardboard package that gives you 5 mg pred tablets in a burst/taper dosage...6 of them the first day, 5 the next day, 4 the next day and so on. But if pred doesn't work for you, then see what the cortisone does. I find sometimes the pred helps a lot, sometimes not at all, and sometimes just a bit...it seems different every time. Anyway, glad you're feeling a bit better and I hope it keeps going in that direction. ((((Cordelia)))) So sorry you are feeling so bad, maybe a depomedrol shot would work? Or medrol tablets? There is a difference, I didnt know that myself until a couple of days ago. Hope you feel better soon
Maria Glad you got a laugh Cordy, I visualize doing the "beat the crap" thing whenever things get out of control. Makes me laugh too, and that helps a little. If you are able to get the IV's, along with the pain meds they can give you "Methl-prednisolone" in high doses. I have done that when things have been way out of control. I have had anywhere from 1500 to 3000 mgs at a time. This helped me when even doses of 60mgs pred a day wouldn't help. And, if none of this works (or even if it does), rant away. You are in my thoughts daily and I say a prayer for you nightly. Please take good care of you and little Nevie. xoxo Crispy
Hey Babe....gosh...I am gonna come and not only kick the RA, but your wanker ex! I cannot express how angry I am at your circumstance, and believe that he is at fault in a huge way. I am so very sorry, and I wish you lived forty minutes from me....I would come, and have some tea, and just sit. We could also break things together. Gosh, the neighbors would think we were nuts...oh, ya, you don't have neighbors! All the better! Love to you and that precious girl. You are doing the right thing by keeping her at home, and secure. You do need to let her in on the secret as much as appropriate. Love ya to pieces!! shel Oh, my dear Cordy, you are so sweet! You always think of little Neve first. Of course, any Mom thinks of her child first, but most are not going through the battle that you are. I think your little one is the reason you can keep fighting so hard! I notice that you are on MS Contin. I took that for quite some time til it just didn't work any more. And I always had a "break-thru" med, to take between doses of MS Contin. I had a wonderful pain specialist who realized that I needed something more, yet again. She had just read an article about Methadone being better for control of pain in women, something to do with a certain hormone, which only women have. (not one of the ones we hear about very often, as I recall). I had taken methadone several years before with no success, but we tried it at a higher dosage, and used MSIR (morphine sulfate instant release) as my breakthru med. This has helped much more for quite a long time until just recently. I have RA, OA, Sjogren's, Fibro, among several other health problems, most effecting my bones, joints and nerves. I suspect that you are dealing with several things, too. I know you have said before, but my memory is all but gone
I feel like I am missing information that I should know
You know you are in my thoughts and prayers. I hope you find the right answer very soon, Sweetie! Much love, Nini Hey Cordy I just wanted to offer a hand in the darkness. Take care Jay OOOOOOO Nini!!! You know who methadone works well for? Lizzie. She takes that, and then has her oxys for breakthrough pain. She's been VERY happy with it. She says its so mild, and the pain relief lasts for so long. Cordy, ask about it!!! You have a tremedous support team here and since this place is open 24/7 you will recieve all the needed support you could ever want...may not be that person coming over to help you out but it is support youwill never find anywhere else that has already been established. I wish I was closer so I could help you along. THe pain can be absolutely unbearable and it sounds like you are beginning to get a bit of control over that and that is the first step. I am so sorry you are having to endure this, I know from first hand experience how difficult it is. Just rest in the assurance you have the best of friends here and always supportive. Cordy, just more hugs honey.xx
It's a simple suggestion but it really works for me...take a hot bath. I fill the tub as full as possible and float...takes the weight off my joints and I relax. I think that relaxing is the thing that makes the pain retreat. Play music or read a book in the tub....
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Cordy, do you have a shower chair? What about cranking the shower heat up up, and just sitting in it? Let the whole room steam up, and just SIT. And soak. Push the chair so you can lean against the wall maybe, and adjust the shower head to hit you well. Thursday is only 2 days away! YOU CAN DO IT!!!! *hugs* Kara, that is toooooo funny. Try to keep your hands off the coat, at least in court, or else your colleague might have to represent you at your trial.
Cordy, So good to hear from you. Man, do I ever know the joy, guilt, joy, responsibility, love, gut-wrenching fear, joy................... of being a single parent. But when my boys were little I was healthy. I so admire you for hanging in there and being such a superlative mom. xoxo Crispy Cordelia, I have a suggestion. First, you have to know that I taught 5 year-olds for 20 years and loved it! You daughter has surely made friends at her school so you might want to see if one of her friend's moms could take her if you have to go into the hospital. Get a few names from your daughter then talk to her teacher to check them out, then call one or two to see if they could do it "some day in the future". Nevie would love being with a friend and you would be secure in knowing she's safe. If Nevie's teacher is like the teachers I knoe, she'll be glad to help a student in a difficult situation. Hang in there - thoughts and prayers heading your way! Kathy Dear Cordy, sorry to have taken so long to jump in here. You have been so thoughtful and sweet with your PMs to me and all of the encouragement you have given ME, and all the time you are suffering. It sounds like you are doing a great job with little Neve, and we all know that's a super important thing, and the teacher sounds dreamy, aren't we lucky to have them!! I hope the meds work for you, but you will go to the hospital if you need to, right?!! I was on 15 prednisone, the oxycodone, ultram, a huge cocktail, and then the Remicade 500, we all seem to react differently and have the docs offer different solutions. When you said you were going to the doc on Thurs, I thought OH NO!, all the offices will be closed and then remembered YOU are in Au, well that explains it. All of our doctors disappear for Thanksgiving....for 2 weeks and christmas too. You have to plan ahead around here. Keep posting we all want to hear from you and your courage is catching!! Love ya, as always, Lynda It is 8:20 pm, Monday night, what time is it there? "....we all want to hear from you and your courage is catching!!" Oh man, Lynda I couldn't have said it better myself!!! Cordy as you sit down to type your posts, you have no idea how many people are standing in the shadows behind you, just waiting to see what you will do. Waiting to have a lead to follow. And you know, I bet there's more folks that don't even post that much, but they're here reading. For those of us who aren't in your shoes, it doesn't matter. In a way, you still end up as a leader. You just keep pushing, through all the darkness that you've encountered. While we may not be able to do as you are this very moment, you can be assured that one day down the line, many of us will think of you. We'll think of how strong you were to pour your heart out and keep on going, and it will give us strength to do the same. One day hunny!!!
Hi Cordy I only got back from 4 days away and have seen your post. Wow what to say at a time like this! I do know where you are at and ranting does help especially to us lot here cause we understand the frustration at not being able to control something ourselves and get the flare back into its hiding place. I am so sorry its not easing up and I can understand where you are coming from with Neve and trying to keep her settled and do things with her but just being there and even a simple thing like watching a film together will reassure her. If you need to go to hospital then you must go , sure it will probably unsettle neve but if you explain to her why you need to do this and its going to make you better so you can spend more time together she will be fine. Kids are resilient. Do you have a friend who could look after her for a while. I have cortisone injections when im flaring and mostly they do help me. There is a light at the end of this tunnel and i know the tunnel feels long and never ending but theres lots of us holding your hand and giving you hugs. I hope you get some answers from your doctor on thursday . You are such a special person on here , take care and let us know what the doctor says.
For anyone who has sent me a lovely PM, they are so appreciated and I will reply but right now I can't stay too long at the computer and type much, so I haven't been able to catch up with them all.
Lots of gentle hugs for ya, Cordy!
The sun'll come out
Hi Cordy, GOOOOOD JOB, getting in TODAY if you can. We need to pressure the docs when we reallllly need them. Let us know what they say. I want them to help you. Can't wait to hear what they say to you....!! LyndaI wish I had been able to, Lynda but couldn't get in at a time I could go, could I. Argh!
hI cordia remember we talked about Mabthera/rituximab read my post, it really does work
I am so very sorry that your RA is so out of control.
Some really good advice happening here, i know it's hard amongst the pain to decide anything about the advice given, but try honey. I would do a hospital visit if i were you, Nevie will be better off in the long run, it's true.
And it's good to rant! I'm glad you're using your writing talents to get some sadness of your chest. All is not lost, you can do it honey.
Luvya, Jen.
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I agree that we are beyond 'traditional' here but then I always think I have been in some ways.
I will ask my GP about the cortisone. It's worth a try since I have had no luck at all with Pred. I am very open to any ideas at this stage, as like Katie said, we are way past the 'traditional' here.
HI Cords, have been praying for you and left a message on your answer phone, love Janie. Keep your chin up love.
Thanks, Janie. I haven't got it yet. I better check.
Hi Cordy, I havent been on here much lately. Each day just rolls into the other without time to scratch myself. Luckily the enbrel has been working well .I think thats why i havent been here. i have 5 years of work to catch up on. when in severe pain only the basics get done and nothing else gets touched. more important things take priority (such as looking after children) I feel like i have been in a living nightmare and i am just starting to wake up. when right in the depths of that nightmare i didnt think i would ever wake up. I so know where you are at , at the moment. Keep hanging in there Cordy, you will wake from the nightmare eventually.
Thanks Maria and Clojio for your kind thoughts and words. It all keeps me going through all this. I shall ask about a depomedrol shot.
I've read your post several times and I've tried to think of something to say to help you. I'm afraid I'm drawing a blank.
Shel, love ya mate, you and quite a few of the people around me would like to kick my wanker ex,
It's Tues morning at 9am here...just thought I would post an update. The pain is still awful but the morphine are not even kicked in yet, they take a week and it's not a week until Thursday. The oxycodone are taking the edge of it for a small bit but not long. I am sleeping though which is one blessing, at least it's not keeping me awake.
As for the depression well I think if you're in this much pain and not depressed there is something seriously wrong with you.
Hi Cordelia - sounds as though you're doing a bit better. I too have a five year old (and I'm a single parent) so I know what kind of energy they demand. I also have an extremely demanding family law practice (people in crisis every day). I'm so grateful to have that bath at the end of the day - which I'm coincidentally running right now having taken my oxycodone. On my really bad days, it's my five year old that inspires me to push on to the next. I wish you better days.
As a funny ... today my colleague in court caught me fondling her coat that she had hung over a chair (it was one of those really soft furry ones - not real fur) - I said it was the oxycodone that was compelling me to molest her coat.
Neve has a fabulous teacher and I think she would be only too happy to help with this issue.
Well, it's Wed morning here about 7.55am. I am still here, going to survive another day. I may see if I can get into my doctor this morning instead of tomorrow morning but it may not be possible.
Pain still pretty much the same. Spirits fairly sunny though. Exhausted though. I had a couple of really good cries yesterday
Tomorrow
Bet your bottom dollar
That tomorrow
There'll be sun!
Just thinkin' about
Tomorrow
Clears away the cobwebs,
And the sorrow
'Til there's none!
When I'm stuck a day
That's gray,
And lonely,
I just stick out my chin
And Grin,
And Say,
Oh!
The sun'll come out
Tomorrow
So ya gotta hang on
'Til tomorrow
Come what may
Tomorrow! Tomorrow!
I love ya Tomorrow!
You're always
A day
A way!
It is Thursday morning here and first thing this morning I already had an appointment set up. So I will take all the ideas you have all given me and see what we can do here.
Will post after the appointment, of course.
Okay, update from doctor...my gp called my rheumy and said it him that she couldn't control my pain, they talked and consulted me and basically rheumy is taking me off morphine sulphate and putting me on a Fentynal patch for pain relief. You put a new one on every three days. Also I just found out that my rheumy appointment is on Monday so that's good I shall be seeing him real soon.
I have no idea if this is going to work. God, I hope it does but at least by Monday...I shall have an idea if it is and will be able to talk to the RD about it.
Hurrah!! for Fentynal patch, I hope so it is the answer, LyndaGod, Lynda, so do I. Be interesting where the rheumy goes with me on Monday too. I really need some solutions. And if it is not working by then at least I can tell him and we can work on it then. I am so over this pain.
Cordy I have the pain same pain patch and it really helps me when I have severe pain...I don't think I have ever hurt like you do bless your heart...but you can take Vicodin or Tramadol with the patches as a boost. Hope this will give you some needed relief.Thank, Moana, honey. Good to hear that it's worked for someone. I have my oxycodone as a top up. I'm starting to feel like the pain meds are just like the DMARDS takes forever to find which one works for you and in which dosage...and so I learn more patience. ARGHHHH!!!!
All I know is if they keep trying things something has to work here.
OOo that patch can be GREAT. They stuck one on Justin during one of his hospital stays, and it lasted more than the 3 days. And he's got a pretty high tollerance. So here's to hoping!!! :) Those pain patches come in different strengths too, I think they go from 50mgs to 200mgs. They at least may help you sleep. They knock me out! Good luck! Something has got to help! The right combo is gonna kick in soon I hope.
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Hang in there hunny. I will most likely be online sometime tomorrow and we will talk then if we catch each other. I loves yas muchly darlin'!!!!Thanks, Liz. I is hanging in there bigtime. Something has to work soon. Look forward to catching you tomorrow probably.
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