Going downhill and depressed about it

Hi Julie,
Sorry to hear that you aren’t feeling well. It can be very…. frustrating when symptoms start retruning. I hope that the IVIG will help you. You will be in my prayers. Keep us posted on how you are, we truly care.

Barbara

Not feeling well and the scarey that goes with it is no fun 😮 Try to look at this as a bump in the road, knowing that after the IV you will feel better. Remember that sadness/depression are part of this “different life” and having to find your own “new normal” is daunting!

Know that I care and wrap yourself in some hugs 🙂

Oh Julie, I’m so sorry to hear that ….. it IS frustrating and depressing, because you think you may be within reach of that light at the end of the tunnel, and wham! it just hits again. I was wondering if you had had your IVIg yet – I certainly hope that you are scheduled soon, let us know when, and I can still bring “Shawn of the Dead” around for you to watch. 🙂

Julie

Hey there! I do hope that you get the infusion soon…it does stink to be ok
for a while, then the monster zaps you again.

Also, don’t forget to get “your” AFO’s…it’s the thing for CIDP’ers…:cool: :cool

Feel better…

Miami Girl

Hi Julie,
I know exactly how you feel! I never know from one day to the next how I am going to feel. When I feel okay – I think I’m over the illness and then wham the weakness, etc hits me again. I’m just so glad I do have the odd days when I feel okay and I now really appreciate those days. I just have to make sure I don’t try and catch up on all the chores that are way overdue to be done and try and do them altogether – which as you know – then brings on the feeling unwell days again.
I am not fond of ambiguity and I think this illness sums up that word really well. I hope you can get some comfort from the fact, that there are others who know what you are going through – Hey – A probem shared is a problem halved.
Best wishes,
Kazza CIDP

Julie,

I am so sorry to hear of your recent attack. It really stinks that it comes back at all, but it always seems to come back at an inconvenient time. I hope the IVIG gets scheduled soon, and that it gives you relief.

On another aspect, you are lucky that you know what to expect this time around. Maybe it won’t be exactly like the last time, but there will be less suprises. You know what to do, and what not to do. I’ll bet this go ’round will be easier than the last. At least I hope it will.

Hang in there, relief will be on the way. I’ll be thinking of you, and put in some prayer time with the big guy.

Take care
Dick S

Hi Julie,

I am so sorry to hear your symptoms are returning. The IVIG should help. I have a question for you. When was the last time you received IVIG and have you been taking and immunosuppresent like CellCept? Hope you get your IV soon.

Pam K
CIDP 2005

I’m sorry. We all really do know how you feel!

Are you on prednisone? I know everyone hates it, but it’s the only drug that worked for me. I still have pain and weakness, and I relapsed this year, but that was my first relapse in 8 years.

I hope the IV-IG brings you relief.

-marie

I’m sorry this is happen to you. I’ll pray for you, Just do the right thing and have faith. God loves you and He will not leave you alone until you feel better. Believe Julie

Hello Julie,

What would we do without those caregivers!! Lean on him again during this and I agree with what everyone said. Prayers, knowing what to expect and what you have done in the past, knowing what to do and what not to do. Hang in there and get well, but don’t rush, just hurry up and get better! 🙂

Hi Julie, I haven’t been on the forum for while. When I finally came back today I read your posts. I can imagine how depressing and frightening it must be for symptoms to come back after doing better for a while. I almost prefer what’s happening to me. Going steadily down hill is predictable and a lot less stressful. As difficult as it may be, I have time to adjust. Learning how to use this voice recognition program, I was faced with the fact that I no longer can use the mouse correctly. So I just ordered an external touch pad. But I still have not given up hope that eventually I will get the treatment that might help me: Rituxan.

BTW, I have more or less given up on second life because it keeps crashing all the time. You said you are not using the computer very often these days so I imagine that you’re not on second life either.

So, hang in there and take care.

I really enjoy your posts on this forum and have
gained great insight into cidp through them.I hope your
doctor can figure out whats causing that feverof yours.Idid
as norb suggested and googled fas ligand but the language
was greek to me. Turning off the inflammatory response
may bethe key to our salvation. Hope your better

joe flaherty

Hey Julie, glad to hear you are getting out of your depression. It’s hard to be motivated if you are down in the dumps. Carol wants to know where in the world you get African dwarf frogs. What do you feed them? Her favorites are tree frogs. She grew up with them near the Texas coast. Now we only have a wooden one in the window.

I have to wait to get my new touchpad before I can try second life again. I’m just useless with the mouse. I do have enough memory. One gig on the laptop and three fourth gig on the desktop.

Take care.

Hey Julie, I am glad to hear you are getting out of your depression. It’s hard to be motivated if you are down in the dumps. Carol wants to know where in the world you get African dwarf frogs. What do you feed them? Her favorites are tree frogs. She grew up with them near the Texas coast. Now we only have a wooden one in the window.

I have to wait to get my new touchpad before I can try second life again. I’m just useless with the mouse. I do have enough memory. One gig on the laptop and three fourth gig on the desktop.

Take care.

Julie, Please enlighten me-Second Life? small houses? bumper boats? as usual I’m lost:confused:
My daughter had a dwarf frog also-she loved it when it would sing to her. I was the one who fed it all the time though-I don’t know how she does it but she gets me to take care of her tank all the time:rolleyes: I had that frog trained in a couple days-it would come over to the front corner of the tank and follow me back and forth where ever I went. of course, I made it hit my finger if it wanted food-which was everytime I went into the room.:D It eventually died, was probably lonely while I was in the hospital-I had to make sure my daughter remembered to feed it. She wants to get a few more to breed them-I don’t know if I’m ready to be a grandma to frogs:eek:
Glad you’re feeling less punk, keep up the positive thinking. Take care.

I Know I Am In Constant Pain All The Time Sometimes I Feel Like Given Up I Try So Hard Ever Day To Keep Going I Am Hoping For A Miricle From Good Hang In Their Julie Their Is Alwas Some One Worse Than Us Roy

Hi Julie. Hope you’ve heard from the healthcare people about IVIG. I’m wondering why you’re not on a regular schedule of IVIG treatments, like many of us are. I get it every 5 weeks now (6 week interval was just too long — too hard to “bounce back”). It sounds like you have the relapsing/remitting type of CIDP like I have — it comes and goes on it’s own. Like Norb said, in some ways that’s almost worse than progressive because it gives you false hope that it will “go” away completely on its own. My experience is that it doesn’t. It was a year-and-a-half between my first symptoms and my diagnosis/treatment, and the relapses were definitely worse over time. The regular IVIG has been great for me. Doesn’t completely help — still have fatigue and sensory symptoms — but I don’t get that debilitating weakness like it sounds like you’re experiencing now. Anyway, might be something to talk to your doctor about. The up-and-down cycle is just too hard, both physically and emotionally, and you shouldn’t have to endure it if treatment will keep you more level.

Caryn

Jules,

Any news about the IVIg, I havent been reading all the posts on the forum, just really the ones from the newbies so I may have missed one saying you were having it done.

Roy,

Are you taking any medication for the pain? If so, I wonder if you have tried anything else to try and help. Are you seeing a good doctor, by good I mean one who is willing to listen and try and help your quality of like a little?

Hi Julie, this is from Carol: “how cool, but I don’t have any idea how to get them from you. I also would have to find out how to take care of them. Maybe we should take a trip to Virginia whenever that might be. 😀 In the meantime, we might try Petko instead. Your African frogs sound like a lot of fun.”

Sorry things are going downhill for you. Hope you’re getting you up overflight VIG soon.

this voice recognition program can be very frustrating sometimes. Maybe my pronunciation is deteriorating. Carol just used it and it came out perfect most of the time. Of course, she is American, had voice lessons and is used to dictating when she was working as a psychologist.

Anyhow, I left the sentence above for your amusement. What I was trying to say is, I hope you’re getting your approval for IVIG soon.

I better quit before I get totally crazy

Take care

I use a wheelchair when I go out. My insurance helps me rent it. It helps me be able to “outlast” the outing. At first it was hard to get used to looking at the world from a waist high vue but it does have its advantages as you always have a place to sit! I also use a 4 wheeled walker at times. It also comes with a seat so I can stop and rest as needed. This works well in the more “crowded stores” and it allows me to go where I want instead of depending on a “driver” for the wheelchair. If I have to wheel the wheelchair by myself I get more tired than using the 4 wheeled walker. I sort of decide how long is my outing, do I have someone that can load and unload the chair, and how do I feel that day. Then I chose my equipment….All this thought for an outing, but I will say I do go more now that I got the walker as the wheelchair was hard for my friends to load. My “strapping young lad” of a son has no problem with it. This is my 2 cents on the subject! 🙂

[QUOTE=Julie]Is there any way to make it look like a Harley or something more inventive than a chair with wheels? Vanity…
Julie[/QUOTE]
Hi Julie, you should see Cheryl’s wheelchair. It doesn’t look like a Harley but it is quite a blast the way it is decorated. It takes a bit of guts and less vanity but could be lots of fun.

I can’t remember where she posted the photo but maybe she can help you out.

Julie,
Cheryl’s picture of her wheel chair is in the picture section, I remember her daughter decorated it when they went to cedar point.

Regarding the wheel chair itself, maybe you could look in the paper for an add, or maybe put an add in the church bulletin asking for one. I know we have one in Grandpa Bobs garage from his mom. If I lived in Virginia I would loan it to you. Heck, call some amvets centers, maybe there is one that was donated. I say get the wheel chair or scooter, I bet insurance would pay if your doctor writes the prescription properly! Speaking of insurance, call them up and ask to speak to a case manager, when there was a 2 day delay in approval for Kevin when he had his last treatment in June, I called spoke and demanded, in less than three hours, they had approval. If you don’t ask, you don’t get! Tell them about your breathing issue, tell them icu care plus ivig would cost alot more than ivig with home health care! By your picture on the site, you seem like such a nice sweet girl, time to change into a Harley set of chaps, pull out the whip, pick up the phone and give it to those insurance ladies! (You mentioned decorating a scooter like a Harley, so maybe there is this biker babe inside ready to get out and roar!)

Have a nice week end, and I hope you get some answers regarding your ivig!

Dawn Kevies mom

Julie

You are so funny…that wheelchair looks like “The Hummer” of all wheelchairs.

Miami Girl 😀