Cordy Update... | Arthritis Information

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Hello all...shall try and keep this short and sweet as much as possible...

I have been home a week from a month in two different hospitals...basically, they threw Pred at me by the truck load doses of IV 500mg x 3 etc and more. I am now down to 25mg. All sorts of narcotics have used...I have now weaned myself off my Fentynal patch 100mg. Rituxan infusion I had prior to this flare has not yet kicked in and we have to wait another month before my DMARD can be changed otherwise risk collapsing my whole immune system. The narcotics I am on are only taking the edge of the pain, nothing more. I am swollen as anything, crippled up and feel worse than before we started.

So why did this flare happen? Ha ha, at least we know that...we know something. My Rituxan infusions didn't overlap due to the politics around how they are administered. This left me unprotected DMARD wise for about a month. My RD is saying that he will not let it happen again even if he has to fudge results to make sure it doesn't happen. There is no margin for error with me and this disease. None.

So in the past month, I have fought hospital red tape, yelled at uneducated ill-informed nurses and doctors, managed to get social workers, a pain management psychologist, a whole Pain Team, social workers, physio therapists, occupational therapists and someone was silly enough to give me a walking stick...oh, what I could do with that... Cordy, I don't know what to say. Can you brother continue to watch Neve? Does he know that you are considering foster care?

Please don't blame yourself. You are fighting this disease harder than anyone I know.

Sorry to hear things are still so bad Cordelia and even more stuff added on. Blaming yourself for what? Nobody asks to have a chronic illness, especially one that's so all consuming like RA. Hope everything works out with Neve, I can't imagine how awful that must feel. Maybe the foster system can just keep her with your brother, don't they usually try to work with families first? Hope something starts turning for you soon.Thanks, Rebecca...for answering. I know nobody knows what to say...I don't blame them...what does one say?

Sorry, I am really, really depressed at this point, obviously and having a lot of difficulty NOT blaming myself right now.

Yes, my brother knows...they can take her during the week but can't do weekends.

I may be fighting this hard, Rebecca but I am obviously not doing it the right way or something.

I was just sitting here thinking, "maybe it's because my attitude is negative that we are not getting anywhere?" It's just a little difficult to have a positive attitude at this point.

Or maybe I just have to keep moving regardless of the pain...move, move, move until that somehow improves things...

I had actually come back to the computer to delete the post when you answered.

I honestly don't expect anyone to have any answers...I don't have any answers...

Sorry, I am so down right now. I sound like a wallowing, whiny, blubbering loser and I hate myself for sounding this way.


Thanks, Deirde, I appreciate your kind thoughts.  I wish i did have an answer for you. It takes so much time. I hope for some relief and yet i am the same. I am so sorry. It just really stinks. I guess we have no chioce but to repair our bodies first and then go back and try to pick up the pieces of our lives that we have misplaced or lost while getting better.

Well i will just pray that you quit flaring really really soon. If i was any where near you i would come over and lend a hand. I would have to hobble a bit. Get well fast. Big Hugs!
Cordelia,
 
Maybe this story will give you a glimmer of hope. January of this year I let my rheumatologist talk me into rituxin infusions. I quit the enbrel in early February and had my first rituxin infusion at the end of February and my second infusion two weeks later. By the time of the second infusion the enbrel had started wearing off and every day there after just became worse. I just kept upping my prednisone to handle the creaping crippling that the enbrel had stopped. At the end of April I had another appointment with my rheumatologist and after he saw what shape I was in he prescribed plaquenal and sulphasalazine. I told him that I had heard that rituxin may take up to four months and he said that in his opinion, if I were not getting the relief by that time it probably wasn't going to work. I was so disappointed and believing that I had made such a mistake stopping the enbrel and going with the rituxin because with the rituxin infusions, enbrel couldn't be givin. Anyway, I didn't take the plaq and sulpha with the hope that the rituxin would start to work. And then, I would have two or three days where I didn't know I had ra and I would think "alright, the rituxin is working" and then right back into pain that seemed even worse. Anyway, now it's been weeks and most times I don't feel the ra effects and I have two miniscus tears in my right knee that give me such pain and swelling and hey, even that is almost completely gone. I really don't like telling this story for fear of jinxing it, but gosh what a drug when it works and hoping that my miracle drug is your miracle drug.
 
LEV
Here's to hoping that Rixutan will continue to work miracles for Lev and start to work miracles for Cordelia. Oh Cordelia, you are not a loser...you are a fighter. Look what you have been through. Anyone would be worn down. Can your brother move in with you and your daughter for awhile? That would help with him being there. The first years are the worst so think of it of being almost there. You can do it. Your daughter is six....she can be your little helper. I think you would feel much better just to have here with you. I hope you can work something out. Get on the phone and call those social services and beg for help.
I wish you the best. You can do it, do it for Neve, if not for yourself.
take care
my thoughts and prayers are with you
Thanks Milly, Lev and Jas.

Yep, I would agree Lev, when Rituxan works...what a drug! The five weeks I had with the first round when it worked was like getting my life back...then I flared and was so disappointed. My RD says that chance the Rituxan will kick in is 98%. Maybe this is the 'darkness before the light' but I am running thin on hope these days, it's hard to keep going.
Cordy, wallow away sweetheart.  Just putting it in words can help.  Never apologize for feeling down.  It hits all of us at some time or other.  Some harder than others.  Some longer than others.  YOU ARE NOT A LOSER!!!!!!!
You are having an incredibly hard time and are dealing with it the best you can. 
If you can get a home carer that would be the best solution for both you and Neve.  It may take a while but it is something that you should definitely follow up on. 
It's times like this that this big land makes it hard to help in a practical way.  I'm glad that some have been able to help you in different ways. 
Know that there are lots of us out there thinking of you and praying for you.
CinDee, unfortunately no, my brother can't move in. She can go to his family this week, at least that will give me some rest if she is there school nights.

I do feel better with her with me, I don't want us to be separated at all. I don't think it's good for either of us.

My pain management psychologist says he believes Neve has separation anxiety because of the RA. I agree. He says although I tell her that RA is not going to kill me, she would believe it will because that's how a six year old's mind works. So a lot of her pushy behaviour is simply about getting any response from me just to reassure herself that I am not dead. OK how about staying with him for awhile? I don't know your relationship but maybe you both could stay there? Or how about a reliable teenager  or neighbor to babysit at your house on the weekends when your bro can't keep her? THen she will be home and still be within ear shot so she can come in your room and read with you or watch tv.....just trying to throw some ideas out there. Geez, if I feel so bad for you and Neve. I wish I could come over and help you out and I don't even know you but have followed your posts. You should like a very loving mommy and this disease just sucks so bad!
Nothing feels like it's helping, Pammy. I wish it did. Don't think I have ever felt quite so down before. I feel angry, sad, frustrated and disappointed. I haven't even been able to eat anything yet today (2pm here) I am so upset.

I am sitting here trying to work out how Neve and I can cope for the next month or two. See, if all we had to do was be together...colour in, read books, watch dvd's...we would cope. But someone has to do all the other stuff that is required to run a household and that someone is me. I can't do both.

I will follow up on the carer. At least we know what the program is now, we know it exists for 2 years we have been searching.

CinDee, thank you for your ideas...I don't know about staying with my brother...I suppose I could ask. Hadn't thought to turn it around like that. Thank you for your other ideas too. I am so lost, just can't see my way at the moment.



Talk to your brother. Sounds like a good idea to me. You can be with Neve and have help when needed. ???????
Keep us posted and keep your chin up!
Much hugs, cordyHi Cordy, I know that you feel that you've given it your all and nothing is working.  But there is something working and it's your mind.  Your fingers may be stiff, your legs may be painful, your eyes reflect pain, your feet may be swollen but your mind is still clear and strong.  You might not feel that way but I see it when I read what you've written.  You're still fighting and trying to cope and find ways to make life easier for Neve. 
 
Remember that much of how you're feeling about yourself and the depression is the Prednisone.  Unrelentess pain and Prednisone sets you up for depression.  I don't know what your situation is with your family but I would think that they would help you to keep Neve within the arms of the family.  If you haven't please ask them for help, beg if you have to.  My thoughts are always with you.  Lindy
LinB, thank you for posting...I wondered what you would say actually. If anyone comes close to a mentor for me...it's you woman.

Neve is going to my brother during the week and home on weekends. I have thought about CinDee's suggestion of me going to stay too but my reluctance is that it would create a lot more work for my sister-in-law and I don't want that.

My mother is telling me that I have to use my mind to think about what I want not what I haven't got. She is right but it is not easy. She says if I can do that I will then be able to see ways through things.

I have cried all day...relentlessly wrestling with this issue in my mind.

And yes, Lin I agree about the pain/Pred combo. I also think you add narcotics too and that whole trio is a recipe for depression.

I am fighting but feel I am losing...

Joonie, thanks for the hugs, sweetie.
Well Cordy. I can't really add anything valuable to what's been said already, so I will just copy Joonie and send hugs.  Your gorilla is big and ugly and mean, but he must have a vulnerable spot.  Don't stop looking for it.  Bet you never expected to add "gorilla wrestler" to your reume', huh?Yep, Link, gorilla wrangling was never in my resume. 

Who knows?  Maybe someday we'll see your book on the shelves "10 (not so) Easy Steps to Subduing Your Unruly Gorilla" By Cordy W

Hang in there Cordelia. If you're like me I tend to make problems insurmountable, I worry, worry and worry some more about things that I can't control. Like you, I don't like to have to ask for help. I want to be self sufficient but there are some days that I just can't be. On those days I feel like I am a huge burden to those who care about me. If I put the shoe on the other foot though, if someone I cared about needed my help I would be glad to give it. Perhaps your brother and sister-in-law are like that too. It's times like these that I am glad my kids are grown and on their own. If I had to send a child away in order for them to get the care that I couldn't give, I would be sad and depressed too. Please cut yourself some slack here. Acceptance of our problems make them easier to deal with. You know that having RA is not something you picked for yourself. I just bet Neve understands more than you know, she's just afraid for you. Children are very egocentric she's afraid for you but also afraid that you may never be able to take care of her. We both kmow that's not true... rather it's not true IF I believe what my doctor says. He tells me that sooner or later RA will burn itself out (remission) and my life will return to normal. I hope this occurs for you sooner rather than later. :) Link, you just succeeded in making me laugh out loud...a consummate feat today, trust me. I love the title...excellent choice.

Wendy, thank you for your kind thoughts. Sending Nevie away is breaking my heart literally. It is sad and depressing. That's the reality.

No, I too believe that my RA will get better...both my doctors say the same thing as yours...but getting through until then, is pretty tough in this household.

I get that Neve is scared...I'm scared too. This is not what I envisioned for my precious child or myself.

I am exhausted from crying all day now but mentally feel a little better right now. I have been doing some positive reading in the past few hours about coping and it seems to be helping a little. I shall persist because my mind is what I have to keep my spirit fighting.

I came across something tonight that Stephen (Bodak) had said to me, in an email, I think...
 I send lots of hugs your way Cordelia...hang in there. You are a strong Aussie girl and that counts for heaps.
 
 
You have mail too BTW and Im about for awhile so if you want to yak...Im here.
I guess everyone else is in bed and we are awake.
 
Sigh....this is what we get for being at the bottom of the world. lolol
 
xxxx  Lyn oh Cordy this all is just so hard for you.
 Here in the states, they have what is called "kinship care" it is exactly for situations like yours
 you contact the  authorities, they arrrange for your family to care for the child and they pay the family a stipend.. Then because they are in the system ( how I HATE that term) they can become elligible for "respite care" in whih the child goes to another family for weekends..
 
is that at all possible.. one family for weekends?
 
I will keep praying for a soulution.
 
 
I'm so sorry to hear of your continued struggles with this awful disease.  I truly hope you will find some light at the end of this dark tunnel very soon.  I will continue to pray for you.
 
Alan
Cordy, I wish there was something I can say.  I just want you to know that I will continue to keep you and Neve in my thoughts and prayers.  It is so hard to think positively when you are in such pain, but take baby steps and don't punish yourself for feeling down.  Take good care, Hiking_galI can't even imagine what you are feeling. I wish I was somewhere close so I could come help around the house, babysit, or whatever you needed. I hope you can find something besides foster care for Neve. I also have a 6 year old daughter and 3 year old boy and girl twins. I can't imagine being faced with that choice.
You are in my thoughts and prayers. Hopefully you can find something that will work out for everyone.  Cordy, you are loved so very much!  I just woke up and there's already 3 pages here for me to read through.  I was going to suggest asking if you and Neve could both stay at your brother's, but I'm glad to see it's already been mentioned.  I know you don't want to put out your sister-in-law, but at least talk about it with them.  Even if it's a temporary arrangement to be re-evaluated in a couple of weeks, at least it may give you some time to get the in-house carer.
 
I am glad you are already starting to feel the positive vibes a little.  There are times we all need to wallow (I throw the best pity parties!) and times when we need to start thinking about pulling ourselves up to face things again.  You have been through such ordeals and you are still here.  It takes courage and strength and you have an excess of those.  I am confident that even if you need to rebuild, or just reshape, your life that you will be able to do it.
 
I will be thinking about you and Neve, and sending you some healing, positive energy ~ ~ ~ ~ ~ ~
Hi Cordy,
 
Am so glad that the information was of some help and that the light at the end of the tunnel just needed a new bulb
 
Gentle hugs and lots of positive thoughts winging their way to you Cordy~ I ready your first post on this thread but don't have time to read it all right now. Just wanted you to know I'll be praying for you.
 
 
[QUOTE=janiefx]Hi Cords, this is such a relentless situation, be brave as you have been, things will work out, you need to believe that.  I contacted the Arthritis Foundation on your behalf, they know the situation and  Michelle Graham from the Arthritis Foundation was going to phone re home help etc, I know she was trying to contact you to offer you some help, I think she was trying when you were in hospital, if she hasn't please give her a ring, she is only too willing to help, love Janie.   Her phone no. is 38570269.  Hugs to you and Nevie. [/QUOTE]

Bumped - re important question from Janie.
Cordy,
I'm not giving up- I'll ask God to give you the strength to hang on until it's His time for you to get better. Sorry it's such a struggle. The days are darkest right before the greatness happens.
I will post an update later this morning, have an appointment with a social worker soon...

A bit of an update...

Okay, Neve packed and off to my brother's for the week.

Talked to Boyd our school chaplain (like a spiritual guidance officer), he is putting some pressure on my brother and wife to help out while I need it.

We have some vacation care for Neve. Grandparents are paying for it and it is near my brother's house.

Meanwhile, her father called and I confronted him over the whole suicide attempt. He got fired from his job in the process, not surprisingly. He was open about it and from talking to him I am feeling okay about letting her resume weekend visits with him. He is following up on his doctor appointments and seems to like and trust the doctor he has, they are going to start him on some medication as of tomorrow for his depression. At this stage they are not dxing him with bipolar or schizophrenia, both of which are in the family so concerns for him.

If Damian didn’t have a plan and was unclear about what he was doing I may have been justified in stopping him from seeing Neve but that isn’t the case. He appears to be doing everything he can to work on the situation at this time and I have told him I will be closely monitoring how he is going here.

This decision of mine has sent my parents into uproar…how could I risk my child and put her in danger etc etc etc…so I then spent last night with my anxiety levels so high I could not even calm my breathing down a little bit. In the end I went to bed like that and thankfully fell asleep.

I do not need this…I need rest.

Why is it if I am home my family, Damian’s family and various others…think I am available to be constantly stressed with issues?

I am starting to think I go to hospital to get some real rest…because when I am in there, they get that there is a boundary and stop for once.

The question for me at the moment is, "To go to hospital or not to go to hospital again?"

What do I do? At home I have my computer, my warm, snugly bed and my kitty. All those things make me feel better.

I have just spent an hour or so with a social worker and occupational therapist who are supposed to organise a case plan and are doing so…just that was tiring enough. They are contacting someone at the Arthritis Foundation they work with assist me as well as lot’s of other stuff.

Janie, Michelle did call me and she was lovely. She is also going to get one of the patient educators to call me…I think it may even be the same person. Thank you for helping with that, sweetie, I appreciate it.

Glad to hear that you have other people involved. As for Neve and her dad...trust your gut. Mom's have a 6th sense. You are truly the only one who knows the whole situation.

Stay warm and snuggly as long as possible. I just got back from "doggie school" and it seems that little Tonka is a dropout. He barked the entire time-never heard him bark before. The trainer called in an additional trainer to work with him. They feel that he was never socialized and a puppy and he was just too excited to be around dogs. He wasn't being bad-just beyond excited. So, I am going to try to socialize him a bit and sign him back up for the classes in the middle of july. Poor little guy-glad I found him!

Ok..totally went off topic there. Just trying to cheer you up a bit with my allergic to cats/dropout dog.

Take care girl!Cordy, I know it can be very hard to stick up for oneself when confronted by your parents, but you need to let them know that they are putting their child (you!) in danger by causing additional stress. 
 
You sound like a wonderful mother and you are keeping an eye on the issues.  As long as Damian is open with you and working towards help, I think it will be good for Neve to have that contact right now.  Plus I am hoping that these weekend visits will also bridge any gaps in care for her.
 
I think you will have to spend some time deciding whether being home or in the hospital is best.  It sounds to me like home is what you need right now, but only if everyone will leave you in peace.  I don't think there's anything wrong with telling people that your doctor is concerned about the effect of stress on your condition...sometimes that "doctor says" approach means that people pay attention.  And if not, practice saying "thank you for the advice/concern/crazy rantings, but I have to go rest now".
 
Anyway, I am glad that there are people working on your behalf now and I hope they come up with some good and helpful plans. I am keeping my fingers crossed!
Hi Cords, I am so glad you seem to be getting some help, you deserve it!!!!!

As for Damian, trust your instincts, try not to be angry at your parents, I know it is highly frustrating, but they only have your best interests at heart, they should respect your decision though, and what else could you do anyway, do they realise there is no alternative?

I think if you get more rest in hospital then take it while you can and while you have this help around you, nobody knows what is around the corner and things may go back to the way they were with Nevie, being unable to go to your brothers, so get all the rest you can and hopefully everything will work itself out for the best, you will always have your kitty and your snuggly bed so don't fret over this too much.  Lots of love from Janie.xxxxx Good Luck. I am sorry for all of the stress that you are going through. Seems like people have the attitude that we are instantly cured if we go to the doctor and the pharmacy. It takes time. I am sure the appointments wore you out. But it is a start. I am proud of you for getting this much done. Try to get some rest.If you are concerned about your daughter's safety, I hope you find her protective custody. Yes,  sick parents do kill their children.  It has happened here.
 
Jan
Gosh, Cordy, I'm miss one day and find this.  Your posts have been so sad, I feel so awful about  what you're going through.  At least at this point it seems you're getting some support for Neve's care.  God bless your family.  They're really trying, it seems.
 
Cordy, I'm going to go out on a limb here.  Please believe me when I tell you I mean you no additional stress.  But I agree with Jan.  I'm really worried about Neve being with her dad right now, especially since he's dealing with depression. Unfortunately, I have experience with suicide, though thankfully, no children were involved in either case.  But I know the pattern and the dangers of a child being with an unstable adult.  It's just not worth the risk.  Please don't be angry with me.  I really, really don't want to make things harder for you.  I just think it's so important for there to be a third party there with your ex and your daughter.  Please at least consider it.  
Jesse882008-06-24 13:21:26I just say your post where you said you are O.K. with your husband having visits with your daughter.  Glad things have improved.  Hope it continues.
 
Jan
Cordelia now sails a different wind and is freeing herself of the anchors in her Life that have over the years, dragged her to the bottom.
One of those anchors has been the EX and I have voiced my concerns about the situation and Neve.
I believe Cordelia has seen what dangers could lie ahead if the EX continues his current path without seeking urgent medical help.

I'll just leave it at that for the time being.

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