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Medical Forum / Diseases and Disorders / Arthritis / May 2007Anxiety
I wasn't going to post to the group in case I worried some of the newcombers but must admit the anxiety is here full blown. I just seem to be falling apart at the seams and need again to vent. Hopefully by tomorrow I will be okay but the last few days have felt horrible. I broke down last night. Went to bed at 11:00, Pat went upstairs to bed. We stopped sharing a room a couple of months ago because when he twists and turns I am sore and don't sleep, when I do sleep I twist, turn and snore and he wasn't sleeping. We decided that this would be for the better so both of us could try to sleep and if I wasn't sleeping I wouldn't worry about keeping him awake. The last week or so I wake having slight anxiety attacks about the rituxan, do my breathing exercises, visualisations, read for a bit and then eventually go back to sleep for an hour or two, wake up in pain, take another pain killer, do the exercises etc. etc. Last night everything hit. I started crying at 11:00 and at 1:00 crawled upstairs and woke up Pat. Continued crying until about 3:30. Feel slightly better today but still scared. I am so tired of all of this. I am scared of the rituxan in a way but not worried about my medical care and know the rd would not give it to me if he were really worried. The problem is (and this is where the newcomers to RA turn and not read - this is not the usual course of the med regime) I have had so many reactions and the enbrel reaction has left me scared. The rituxan has more warnings than the others and frankly although I know the risks are still less than my fears of the disease they have me scared. They aren't silly risks. I know all precautions are being taken but having missed the bladder thing because I was in so much pain I wonder if I will miss noticing the side effects of the rituxan. So many side effects I already have as result of the enbrel and the disease process. Concern number 2. If this doesn't work I am so afraid I can't keep on as I am. I am so tired, in so much pain in the feet etc., and just am not sure how much more progression I can handle. It is not just a matter of pain control - I can take more pain killers but with the neurological pain I am at my limit. The neurological pain is being made worse because of my gait etc. Lying down doesn't help for long and the fatique is overwhelming sometimes. I am looking forward to the new house but if this med doesn't work I just don't know where we go from here. I thought about getting put back on antidepressants but know that is not the solution. More painkillers are not the solution - with my mix I am already way drowsier than I wish to be. If this doesn't mix I will go to counselling but that is going to cost big time. I just want my life back and I need my positive outlook on life back too. Can't say there is a lot of enjoyment although I keep working hard at creating little pockets like the weekend away a couple of weeks ago. The problem is everything is lots and lots of work and pain. I know things will improve = I am just overwhelmed again. Glad I shared a positive thing a couple of weeks ago because otherwise I am sure people would be writing me off as a whiner again. Still hanging in but darn that rope has turned into a string and the string is looking kind of frayed. Will talk to my rd tomorrow and hopefully that will make me feel a bit more confident going into this. Just don't need anymore permanent or painful side effects. The memory of the orencia headaches is still pretty fresh. The pain of the enbrel may never go away (although apparently rituxan has been used offlabel in a couple of cases for bad periphral neuropathic pain so lets hope.) Okay time to buck up. Will be okay but needed to vent and who better to vent with than people who understand. For the new people it is not usual to see side effects like I have had in such large quantities so don't be scared - just follow all the rules of the meds and be smart. Take your meds properly, do your lab tests on time, be proactive. Kelly (((Kelly))) I am no stranger to anxiety attacks, and was on meds for a few months for it last fall. Do you have anything you can take short-term to get you through this period? I was able to stop taking mine when a particular stressor was resolved. You have so much more to deal with than I do, that I can't imagine trying to cope with it all, and not go a little bit over the edge. I will keep you in my thoughts and prayers during this scary time, and keep hoping that the new thing you try is the magic thing. Hugs, Kelly C. >I wasn't going to post to the group in case I worried some of the >newcombers but must admit the anxiety is here full blown. I just seem to [quoted text clipped - 66 lines] > > Kelly {{{{{{{{{{{{{{{{{{{kelly}}}}}}}}}}}}}}}}}}}} m (((((((((((((Kelly))))))))) Sweetie, don't ever feel you have to hold back anything for fear of being a whiner. This is the place to whine and we all need to whine and vent and talk to people like us who do understand. This is a scary disease and the side effects of some of the treatments are scary too. We've all been there Kelly, and it's not a fun place to be. But we do what we have to do and come here to vent, and whine and rage even. But we come here for support and that's why you need to be here, among people who understand and will support you and hold your hand through the scary times. We care about you and want to know all that you're going through, the good, the bad and the scary. It's going to be OK, Kelly, we're all right here with you. Gloria (#1) >I wasn't going to post to the group in case I worried some of the >newcombers but must admit the anxiety is here full blown. I just seem to [quoted text clipped - 66 lines] > > Kelly ((((((((((((((((((Kelly)))))))))))))))) somtimes we just have to let loose with it all. I've found (more ttimes than I care to mention!) that letting it all implode for a while is a most effective way of making it possible to deal for the rest of the week. Just one thought though - might there be a support group in your area either for people with chronic illness in general or with one of your illnesses? That might be an affordable way to get a local place to release some of the anxiety. Otherwise, call your quilting friends and get them to come over and give you the big hugs we have to send through the computer! And you certainly aren't strange for having these fears. You've busted wide open the parameters for side effects of our meds and you and Donna have this insane competition going on to see who can deal with the most problems in one year. (stop it NOW, both of you!) Hell, my problems are so much milder than yours, but I've been getting major setbacks every time I *start* to get into a rhythm again with exercise - and usually very painful setbacks. It's reached the point that I can't get myself to try again because I fear the return of the pains (more about all this elsewhere). If I can fear side effects so relatively minor and doing something as healthy as exercising, you can certainly have anxieties about rituxan! LOL I had a total meltdown last Monday when Mike asked me to do something for him while he was out of town that week. (It was something he *should* have realized needed dealing with earlier than 2 hours before leaving on the trip!) I was a real mess for a couple of hours and cried as much as my costo would allow, then ended up sleeping most of the afternoon on the couch. This weekend, I've been caring for a husband with some intestinal crud - no more details than that, but I had to wash EVERYthing on the bed yesterday. Sometimes we just have to melt down so we can then do what has to be done down tthe road.............  SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare Kelly: I'm not much help, but only want you to know that you are not alone in this running on overload until you have a melt down. I think it goes along with having a chronic condition to deal with. Actually, I firmly believe that a good cry once in a while relieves the pressure and allows you to start all over. I hope today is better for you. Ann > I broke down last night. That's allowed. > rituxan has more warnings than the others and frankly although I know the > risks are still less than my fears of the disease they have me scared. Most of these are the manufacturer's CYA. > I thought about getting put back on antidepressants but know that is not the > solution. But they might help as it's apparent you're depressed. Even though you have reason to be you don't need excessive depression added to your troubles. Check with your Doc about the anti-depressants. They're still cheaper than councelling and more convenient to use. > The problem is everything is lots and lots of work and pain. Yep, that's life. > I know things will improve.. Yep, that's true. ;-) Wishing you the best. Kelly, you are SO entitled to whine. Was the doctor able to give you any reassurance on the rituxan? i know how scary the future must look to you right now, but try to take it one gimpy step at a time. i had my own personal meltdown the other night. Was lying in bed and i couldn't stop thinking about all the things that are wrong with me that i'm supposed to get checked regularly/scanned/mri'd/surgeried, and watching my left foot get deformeder and deformeder (yes, i do write for a living!), and it all just hit me--whack! --along with the $ %#*&$ hot flashes and i started bawling. maybe it's going around? anyhow, you're one of the strongest people i know in this group, and that's saying something. we'll be here for you no matter what. holding you in my heart, diane >i had my own personal meltdown the other night. Was lying in bed and i >couldn't stop thinking about all the things that are wrong with me >that i'm supposed to get checked regularly/scanned/mri'd/surgeried, >and watching my left foot get deformeder and deformeder (yes, i do >write for a living!), and it all just hit me--whack! --along with the $ >%#*&$ hot flashes and i started bawling. maybe it's going around? It must be meltdown season. Mine was about a month ago. I had a bad flare of my MS after my husband had a bad fall and fractured his hip. I did the hospital visit thing for three weeks (I much prefer working in one to visiting in one), and then both my MS and RA flared, badly. I had five days of high doses of Solu-Medrol which plays havoc with my emotions, and was more apt to cry than laugh for quite a while. I am becoming much more stable now, but boy these things are hard to deal with at the time. Gentle hugs to Kelly and Diane and everyone else who is in Meltdown Mode right now. Joan > >i had my own personal meltdown the other night. Was lying in bed and i > >couldn't stop thinking about all the things that are wrong with me [quoted text clipped - 15 lines] > > Joan Maybe you should just kill yourself?? You appear to be a drain on society....It would be better for everyone... Joan, I missed this the first time - and unfortunately came upon Howard's message - time to killfire. Anyone that can answer like this is sick - just plain sick. Please please delete his messages. I agree - it is hard to deal with these things cheerfully everytime - sometimes we just have to meltdown for a bit. Kelly > Joan, > I missed this the first time - and unfortunately came upon Howard's [quoted text clipped - 5 lines] > > Kelly Please do not meltdown any or at all. In a very cool Mann, report him to his server for his words.... Now,,,,, that is doing something,,,, that makes a difference and it does work when people stand together against people that would abuse our world of the internet. Harv > Joan, > I missed this the first time - and unfortunately came upon Howard's > message - time to killfire. It's called 'killfile' you f.cking idiot.... Arthritis causes brain damage? I never realized it... You're obvious proof though.... You and Harv..... Anyone that can answer like this is sick - just > plain sick. Please please delete his messages. > > I agree - it is hard to deal with these things cheerfully everytime - > sometimes we just have to meltdown for a bit. > > Kelly OH my,,,,, your words in a support group will make good reading with your servers. Harv >> >i had my own personal meltdown the other night. Was lying in bed and i >> >couldn't stop thinking about all the things that are wrong with me [quoted text clipped - 20 lines] > You appear to be a drain on society....It would be better for > everyone... > OH my,,,,, your words in a support group will make good reading with your > servers. [quoted text clipped - 28 lines] > > You appear to be a drain on society....It would be better for > > everyone... And your comments in a firefighters group about California chiefs lies about his FD service? When can we expect to see that? PLONK!! a.shole. > Maybe you should just kill yourself?? > > You appear to be a drain on society....It would be better for > everyone... >>> i had my own personal meltdown the other night. Was lying in bed and i >>> couldn't stop thinking about all the things that are wrong with me [quoted text clipped - 19 lines] > You appear to be a drain on society....It would be better for > everyone... {{{{{{{Kelly}}}}}}} Vent away. Sometimes one needs to face one's fears head on and overcome them, and sometimes one needs to face one's fears, know they are real, and run like hell. This is a good place to run to, isn't it? Things will "settle down" and I'm hoping it's very soon for you, Kelly. Sometimes it takes more time to "get a grip" than others, and that's okay. You'll get there! You are in my thoughts & prayers. luv&hugs&stuff, Denise Thnaks everyone - I am okay this afternoon sort of. An up and down sort of thing. Will answer to everyone at once - my hands are starting to scream. The rd has a serious warning for me about the rituxan because of my weird disease patterns and the weird side effects I have had from most of my meds. He increased my leucovarin because he said I shouldn't be having so many mouth sores from 7.5 mg of injected mtx for example. He is sure the shingles wasn't helped by the orencia but rather perhaps maybe the orencia caused the virus to attack. Probably - my conclusion too. The attack was too soon after and was pretty violent especially given the fact we used the antiviral within 8 hours of the rash. So the warning on the rituxan is about PML http://www.fda.gov/cder/drug/infopage/rituximab/rituximabQA.htm and because it is a neurological virus that is latent in the body and can be brought forward so to speak when on not just rituxan but to severe immune compromised people and because of the deaths associated with the rituxan and PML he had to warn me. The chances of it happening are very slim. I made the decision with my mom and husband and rd's advice to go on with the treatment and take chances. It is a small chance but with the neurological damage from the enbrel it could be real. I asked him the alternatives - he said for me with him that would be the last one he could see right now. I do not qualify for any trial med with my side effect from the enbrel. I could go see someone else but he has consulted with some of the best and i know he is doing the best for me. I completely trust him - obviously with my life. Might not happen and that is okay but if it does it is better than the disease process and I just can't keep raising the prednisone without hitting the same side effect chances. The prednisone is barely keeping me moving as it is. I have rallied my support system and my mom, sister, husband and quilting friends are keeping me going - thank goodness for great support. I have had some letters from some of you and know that I have the greatest friends and support anyone could have. And this treatment is going to work darn it. We also decided that one more med that will in most likihood cause another side effect before this treatment is not smart so am not going to go back on an antidepressant. The last side effect I got from the antidepressant were the same as the side effects of rituxan and I need to be able to report those. so I am continuing to set goals, treat myself to special moments, resting and not pushing myself to exhaustion and depending on my support system as I need it (which I do.) So life goes on and I am not going to look for trouble but will watch carefully for side effects over the 12 months or so after the infusion. I feel though this is my med and in some cases it helps with neurological pain which would make it incredible. Thanks for all the help everyone. Donna suggested I quilt a stronger rope and that is what I will do. Our of all my bright quilting fabrics to cheer up my life. Kelly I am sorry to hear that you are continuing to have such a rotten time of it all. It does not seem fair at all. A good bawl may be just what the doctor ordered to set things back on an even keel (well, as even as can be expected). I will be thinking about you and hope that you can get back to where you were before all this nonsense started. Hopefully the retuxan will be the miracle. Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. Whoa group. We are all falling apart aren't we. Kelly, Diane C, Joan and Hubby, Melinda, Donna, Nann, Dee Tee and any others I have missed you are all in my prayers during this time of anxiety and troubles. You are all close to my heart and I am hoping wonderous things happen for us all. Love you all. I am in the anxiety pot with you all so I know what it is like. We shall all overcome. We have to. SignatureLove and Hugs to all Jo the squirrely one Amen, SJ, Amen!!! . . . Donna G. . . . ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS...... Can I just say how very much I LOVE you all!!! I have read all of your responses to Kelly, and I just sit here in tears. Tears, though of complete awe at what an incredible group of people you are!!! Even though so many are struggling right now, you all find it in you to still share support with one another. Each of you is such an inspiration and so awe inspiring and I just hope you all know how truly incredible you are and how very much you are all LOVED!!! God Bless you, my ASA family!!! . . . Donna G. . . . ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS...... Thank you from the bottom of my heart too (and it really is a big heart - and it works which is a miracle in this body). I have had so many doubts, fears etc this week but always knew I could come here for help. I even heard offline from people that are lurking in the bushes with some encouragement and great advice. I picked up a teal bracelet yesterday and put it on thinking that really this group is like that bracelet. We are an unbroken circle, nothing super special on its own but as a group so strong and meaningful. Almost a secret club which is open to everyone (well except for the harvester that was going to special formulize a health driven anxiety formula for me - hello????) . I am strong again today and had another good talk with my mom. The PML is a small chance in my opinion but will be horrible and a sudden (weeks to a couple of months) death if I do get it. The success rate of curing it in a rituxan setting is pretty much nil - it is fatal and fast. But darn it I could die getting hit by a bus with almost the same odds. And if we increase my prednisone anymore then I am at odds to getting PML too with no possible benefits to my RA so go figure. No brainer right now.If it were not a neurological thing I would dismiss the idea completely. After the last episode well.... So I am going to stick around here - support others, have a great time, send off stamp money, wear bracelets, make more great friends and remember the friends that aren't here in person but will always be with me. Do you know that Diane Eden and I were secret pals? One of the people that I always thought was incredible. Larry gave me several months of arava when I was paying for it myself and he couldn't take it. I am still working on the needlework kit his wife designed. Diane's husband and I have written back and forth online a couple of times - a great person I wouldn't have known if it hadn't been for his encouraging and incredible wife. Lori - I think of her everytime I see a christmas card. As for the rest of you - one day you will get a phone call and I will be on your doorstep to take you for coffee or maybe a margarita if the case were to be. I got so close to meeting Jo and Mary but this summer is the time to finally see Kate, and Carole for sure. Donna - you and I are going through these battles together and will win them. Gwen - this year has been tough I know. Wish I could help in some way but know that I am hoping for the best summer ever. Jo - I read your email when I crawled home from quilting today. Stamps will be mailed next week - went to pay to send some cards from Canada - nope could pay your med bill for less money! Melinda - you keep me going with the encouraging hugs - you and Diane. I wish I could be closer to help your daughter though. I think she could use a hug from someone as well as her mom. Would you tell her I am always an email away. I know I have forgotten many but not really. Rose - I am going to tell you in a phone call one of these days when things die down a bit. I found the honey pot you gave me when packing yesterday. Another secret pal who I have met!! I agree with you Donna. There is nothing that takes the place of support - even my mom doesn't really understand the struggle and she and Pat are my close support system. I can't share with them though what I share with you - they can sympathize but not always empathize. Love, Kelly > Can I just say how very much I LOVE you all!!! > [quoted text clipped - 19 lines] > ANGELS EXIST, but some times, since they don't all have wings, we call > them FRIENDS...... Glad you are strong again when you wrote this post. You are a strong woman you know, all that you have endured the last few years. I admire your courage to keep going forth. Yeah the prices to mail stuff from Canada are unbelieveable. I saw that when I got a friend on the fms group I am on and she sends me a christmas package. I couldn't believe how much it costs to mail things from there. Also she sent me a book, I couldn't believe it. I was about to tell her to send me the money instead and I could buy three books for the price of one and the postage from there. Any money I am getting I am putting in a ASA fund so that it will go for stamps or cards when needed, as I run out of things. It is so good to hear you are getting stronger. I am happy for that. SignatureLove and Hugs to all Jo the squirrely one > Thank you from the bottom of my heart too (and it really is a big heart - > and it works which is a miracle in this body). I have had so many doubts, [quoted text clipped - 83 lines] >> ANGELS EXIST, but some times, since they don't all have wings, we call >> them FRIENDS...... > Can I just say how very much I LOVE you all!!! > [quoted text clipped - 11 lines] > Donna G. > . :-) Who says you can not feel love over the internet...... give love over the internet,,,,, receive love over the internet and on and on it goes and it goes around this world and maybe into the next,,,,who knows... Thank you for the blessing,,,, it means a great deal to me and I am sure to others. Harv Bob tells people that I get more real support from my ASA friends than from family and church combined. LOL He's right in oh, so many ways. You people are phenomenal and I love you each. You are mentioned in my prayers - sometimes by name - always as a group. DeeTee > Can I just say how very much I LOVE you all!!! > [quoted text clipped - 19 lines] > ANGELS EXIST, but some times, since they don't all have wings, we call > them FRIENDS...... > Bob tells people that I get more real support from my ASA friends than > from family and church combined. LOL He's right in oh, so many ways. You > people are phenomenal and I love you each. You are mentioned in my > prayers - sometimes by name - always as a group. > > DeeTee and that is the way I am and see it. I do not have to tell you for you to be prayed for. I do not have to understand all there is to your problems for you to be prayed for. I do expect God to know and understand the people I pray for and the problems they live with. We all are just children of God that need help and understanding. I know that God knows who someone's child is and problems teach us more than we understand now but with time we can find peace about anything with God. Harv > Bob tells people that I get more real support from my ASA friends than from > family and church combined. LOL He's right in oh, so many ways. You people > are phenomenal and I love you each. You are mentioned in my prayers - > sometimes by name - always as a group. > > DeeTee well, it doesn't really seem fair to quantify the support. ASA support is a different sort - and to get this support from an off-line community, folks would have to quit their jobs and move in with you! LOL - even then, they'd ahve to be available at all hours of the day. I'm with you, the group is always in my prayers and those with special needs at special times are mentioned by name. SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare Kelly, Sweetie, I am praying and praying and thinking of you. I wish the best outcome in all of this for you. My heart goes out to you. I will help you sew those seams tighter so you don't come apart. ;-) It is no wonder you would have anxiety attacks about the rituxan after what you have been thru. I do that also from having reactions to so many meds and mine wasn't as bad as yours. I know sweetie that you are tired of this. It is no wonder. Look how long you have been fighting it. It is hard when you have reactions like that. I know how you feel about missing side effects. It is hard to tell alot of the times if this is something from one of the issues we deal with or if it is from a med. Denise and I talk about this alot, also which issue is causing it since alot of the issues cause the same things. ;-) You have to be a detective to figure it all out. ;-) I know you are looking forward to the new house. But pain does put a damper on things that we are looking forward to. It is sad to say the least. Kelly I am sure one of these days you will get your life back. I bet you will get your positive outlook back too. Look how well you did a week or so ago about looking positive. You can do it again. Yeah there are pit falls in our way, so we do need to whine and talk about them to people that understand but there are positive times too. Yes, you are overwhelmed right now and that is to be expected. I think this is the month for overwhelming people. I see so many really struggling and trying to get thru it all. Yours has lasted longer than most of us. You would never be wrote off as a whiner here. So if you need to whine then whine. How else would we get the good cheese that we do with the wine party. ;-) Maybe I can send you some of Jims cable which would be stronger than your string you are hanging on to. ;-) I hope you know I am trying to get you to smile and not making light of what you are dealing with. I know what a struggle it has been for you and continues to be a struggle. I read your other post and am glad that you are doing a bit better. Hope the up and downs (yoyo affect) stops soon. I get dizzy from the yoyo affect and I bet you do too. I still hope that this will be your miracle drug. I hope it works so good you will be out there kicking away at the world. Glad that you have the support systems, setting goals, treating yourself to special moments, resting and not pushing myself. You were saying you weren't positive, what then is this. I would say you are taking positive steps in the right direction wouldn't you. You take care and big gentle but soft hugs to you and alot of TLC. But I am not sharing my choc. with you sorry I have to keep my private stock since my Blood Sugars are doing the opposite this time with the pred and bottoming out. ;-) Love you Sweetie. SignatureLove and Hugs to all Jo the squirrely one >I wasn't going to post to the group in case I worried some of the >newcombers but must admit the anxiety is here full blown. I just seem to [quoted text clipped - 66 lines] > > Kelly |
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