AnonymousJune 19, 2008 at 12:14 am
I’ve been so lost … so much pain and sadness.
I’d like to rejoin the community. But I don’t know how.
My mom died, etc, and now my IVIG doesn’t seem to be working as well as it used to.
I have no right to ask any of you for help. Yet I am…
Please communicate with me. No one seemed to notice when I dropped of these boards before … I’d like to think that I matter.
S0rry if I sound pathethic, but that’s where I am right now.
AnonymousJune 19, 2008 at 1:36 am
[SIZE=”5″]Welcome Back, Caryn!![/SIZE][SIZE=”3″]It is good that you have returned.[/SIZE] It is not that you weren’t missed but many of us take breaks now and then. I’m real sorry about your mom. That would make everything feel worse. The way to “rejoin” is just keep talking to us, joining in whenever you can. Don’t forget to check out “The Lighter Side” for some good old fashioned merriment.We like to laugh lots to give a good boost to our immune systems 😀
AnonymousJune 19, 2008 at 2:21 am
Caryn, Once a part of The Family, Always a part of The Family. Vent about anything you need to. We All understand. I’ve been wondering how you have been, wanted to give you your time to grieve, after all the stressful things you have been through lately. I’m glad you are back. Sorry your having problems with ivig, I hope it is just from stress and not a permanent thing. Big Hugs to You!
AnonymousJune 19, 2008 at 7:38 am
Caryn, Glad you are back. I often wonder what has happened when someone drops off for a while. Eventhough we are all family, there is a matter of respecting others privacy. Sometime we just need a break. But the important thing is that you are back now. There is so much support here.
So keep us posted, check in often, better days are ahead.
AnonymousJune 19, 2008 at 9:38 am
You have every right to ask for support. That is what this forum is all about. And yes we do come and go as we need the help and no one here thinks badly of you when you take a break. Please feel free to drop by here any time and vent to us. Sometimes just saying the words helps.
We are planning a party over at “The Tavern”. Why don’t you join us for a few laughs, bring an instrument and lets just have some fun!! LOL:D
Please accept my sympathy on the loss of your Mom. That is and of itself something that can create stress and sadness.
AnonymousJune 19, 2008 at 8:01 pm
One thing you can do that will help you alot is to go to the symposium in November which is going to be in the Chicago area. Details of it will be mailed out in August, but you have to make sure you are a member of the foundation and not just the forum to receive the info. You can also wait until August and register for the symposium online by going to the main web site [url]www.gbs-cidp.org[/url]
Go to the symposium, wear a BIG name tag and you’ll see how many of us will hug you.
I lost my mom recently and I miss her so very much. I know what a mom means to you and I have a shoulder for you to lean on. All you have to do is click on my name and send me an email. The only reason I wouldn’t respond is my computer will shut off on me and I might not be able to keep it running until I get my new computer.
Don’t ever give up, we do have hope, it’s just a matter of finding what works for you.
AnonymousJune 19, 2008 at 11:12 pm
I’m sorry to hear that you are having such a rough time. This is a good place to vent some things and get support. You don’t sound pathetic at all–just someone who needs some TLC. It’s hard to do that on line, but I know that it can be really reassuring when someone responds. Being ill and feeling overwhelmed is a terrible feeling. I’m pretty new to the forum but I find the members very supportive when the chips are down. Take care and make sure you let us know how you are doing.
AnonymousJune 19, 2008 at 11:53 pm
you see… you said you didn’t know how to rejoin but you did…it seems like around here all you have to do is reach out just a little and someone will grab your hand and help pull you up and out! You are not alone and I’ve found this is a great place for warmth and support!
Hang in there!:o
AnonymousJune 20, 2008 at 4:57 pm
Welcome home. I’m sorry to hear about your mother. You and your family will be in my prayers. Once your part of the community you are always with us, so don’t worry about “rejoining”. You never really left.
I hope you enjoy the view.
AnonymousJune 20, 2008 at 10:37 pm
You know I am no expert on this., but ivig is only one part of many possible treatiment routes… If you feel physically you are having relapse issues get in touch with the doctors… As far as the mental side, we are here for you as we are all dealing with stuff as well, and know how easy it is to get down… I try to remember how far I have come this last 8 months, and how lucky I am that things are not worse, or that I have other diseases, etc… Try to focus on who you are, and build a positive support group around your base……Also, there are medicines to help deal with emotional stuff, and the pain…. I personally like using your inner strength rather than what comes in bottle form.., if at all possible… Good Luck Caryn, and keep posting as often as you like,….deanop
P>S> Hey Jim, that looks like Duluth, Minnesota take away 50 or 60 degrees F…!
AnonymousJune 22, 2008 at 1:27 am
I belive we’ve never met before, so i just wanted to say hi. My name is Jamie. I’m pretty new here and im loving it. Everyone is so sweet, and full of all kinds of knowledge. I can’t tell you how much better i feel after stopping by this place!:p
Good Luck and Best Wishes;)
AnonymousJune 22, 2008 at 1:49 am
Greeting Miz Caryn,
The last two weeks I have collapsed-bad reaction to infusion number # 205.
Last year my wonderful daddy died.
Then for some reason I rally and surprise even myself.I love on my big kitty and enjoy just made chocolate chip cookies.
It’s okay to have crummy days.The summer heat and humidity makes CIDP worse. I wish you better days and they will come.
AnonymousJune 22, 2008 at 3:21 pm
[FONT=”Palatino Linotype”]Hi Caryn: I just saw your post I’ve been away for a little while, I can relate to your loss of your mother. So sorry I have been trying to understand the losses this yr, of my relatives as to which I have lost 8 of them this yr. See I have this deep hurt from losing my wife Debra last yr, I also feel lost. I just keep thinking things will ease off, but the hurt that was created, is as strong as it was the day my passed away.
To add to making things worse I developed neuropaty several months back. It has made my life totally miserable, every day I hope for the pain from this to go away. I am on Lyrica & it has helped but still the pain continues, I’ve had days that are totally bad & I don’t even want to get out of bed. I just force myself to keep going, I just wanted to tell you how sorry I am for the loss of your. Take Care & Just Hope for the day to come when things will get better.[/FONT]
AnonymousJune 22, 2008 at 11:55 pm
In time, when one has been on the forum for a number of years like I have, I guess I never question anymore when someone chooses to just move on. I assume that they got better & got on with their life, or that the forum didn’t do much for them. That is why I almost never try to contact someone whose name I no longer see. If someone needs our help & support, all they need to do is come here & post, as you can see by the response to Caryn’s thread.
I have also had a rough time lately, the severe lower back pain I had a few years ago is back. I think it is from having to move my mother-in-law into Assisted Living, as her dementia just got too bad for her to live alone anymore. I know that was a terrible decision for my husband to have to make, but it seems to be working out for her & we know how well she is being taken care of. But he & i had to empty out all of her things from a large apt. all by ourselves; no, I didn’t lift any furniture (that was all donated to charity), but I did have to do a lot of sorting, packing, ect. which involved a lot of twisting & bending.
We also had to put our Siamese cat of 15 years to sleep on Friday, never dreamed it would be this hard on both of us. We had put up with some pretty erratic behavior the past few years, but then realized he was using our guest room as a litter box. He was with me through every terrible day of this illness for the past six years, on my lap at all times. I feel like I betrayed him? But we brought him home & made a nice grave in the back yard with a lovely cross my husband made. Maybe too much of a reminder; just couldn’t let them throw him in the landfill. I was also with him when they gave him the shot, as I wanted my voice to be the last he heard & my kisses to be the last he felt.
Now just waiting for some summer weather here in MN, enough of this rain & wind! There, that is my ranting for the night…
AnonymousJune 24, 2008 at 12:03 pm
I am sorry to have lost touch. I have not been on lately but I know exactly where you are coming from. Sometimes it is easy to feel lost in the mix. Good for you for just putting it out there. Loss is like a huge ocean that is impossible to tread alone in. Keep writing. Everyone cares. All my best.
June 24, 2008 at 2:48 pm
Glad to know you could come back here and be welcomed. Last we spoke on the phone you were needing a break, I am happy to see you again.
Has there been a change in the ivig treatment plan? You seemed so steady before. Perhaps all of the stress of late has changed things, maybe a re load would help and then push things up a week. Well, I hope to see you respond soon, I will be watching.
FYI, don’t forget about the symposium in November, it is in Bloomingdale Ill. They need some local volunteers if you are interested. Give me a call!
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