Going downhill and depressed about it
AnonymousSeptember 14, 2007 at 8:07 am
Well I guess it shouldn’t surprise me that my symptoms are coming back but it has made me very depressed lately. I guess I had convinced myself that I was on the mend but not back to normal – yet. Now all those symptoms are coming back just like they did last year. Numbness, muscle spasms, and yes, even pain are all getting a little worse each day. My doctor has ordered the IVIg treatment for me, I’m just waiting to hear from the home health folks to schedule it. But I’m disappointed, depressed and really not feeling very well at all. 🙁
AnonymousSeptember 14, 2007 at 9:14 am
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 🙂
AnonymousSeptember 14, 2007 at 11:36 am
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. 🙂
AnonymousSeptember 14, 2007 at 7:58 pm
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.
AnonymousSeptember 16, 2007 at 1:43 am
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.
AnonymousSeptember 16, 2007 at 4:18 pm
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.
AnonymousSeptember 17, 2007 at 2:57 am
Thank you everyone for dragging me out my depression, again. I am still waiting to hear about the IVIg, I’m not sure what the hold up is but if they haven’t called to schedule by tomorrow I will call my doctor back. I have not had IVIg since August last year. They started me on Cellcept just after the last IVIg and then took me off again because of the “fever of unknown origin” which my current neurologist says is due to autonomic nerve damage. For this reason my previous neurologist also did not want to try IVIg because they did not know what was causing the fever. So I’ve been going up and down for over a year now and most of the time I bounce back on my own after a few weeks. This time, however, I ain’t bouncin’ back like in the past, I’m dragging myself from bed to bathroom and using the walker and cane again. Although it is still progressing slowly my husband is worried (me too a little) because last time it went very slowly for a long time and then sped up within a week to land me in the hospital unable to breathe. I’m not having trouble breathing or even a twinge in that area but we’re still dealing with the initial panic that the symptoms are coming back. Yes, so far, the damage is in the same areas and progressing the same path so that at least is something familiar. On the other hand, there wasn’t too much of my body that wasn’t effected the first time around either so I’m hoping the IVIg jumps in before my one good limb gets stupid on me too. No, No, No I don’t take prednisone anymore and with luck and good physicians I will never take it again. I suffered most of the side effects listed, gained 38 pounds which I STILL HAVE, and it didn’t do anything except make me bitchy to the one person who has been my lifeline through this whole thing. (That would be my hubby!) So no more prednisone. I gave it a fair shot, we tried it 3 times, I gained 10-15 pounds each time, spent my days hungry and crabby and my nights pacing the floors and in between running to the bathroom. It’s interesting that prednisone helps you because I’ve heard and read that it typically does not help with CIDP. Good for you! I’m not taking anything except baby aspirin and B vitamins right now but I have 5000 cellcept pills in a dark drawer, probably outdated by now and I don’t mind taking immune suppressants. I rarely get out anyway and though our house isn’t spotless it’s usually cleaner than your average restaurant as evidenced by my husband’s tendancy to get salmonella poisoning when we eat out but he doesn’t get it when we eat in. 😉
Thanks again for cheering me up you all. I am not able to sit at the computer for very long right now but I’ll check in when I am able. It’s 3:00 am here, hee hee, but my body has been sleeping and resting a lot lately so it was ready to GET UP!
AnonymousSeptember 17, 2007 at 6:29 am
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! 🙂
AnonymousSeptember 17, 2007 at 12:02 pm
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.
AnonymousSeptember 17, 2007 at 11:41 pm
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
AnonymousSeptember 18, 2007 at 3:57 am
Hey there ya’ll,
I’m coming out of my low-level funk/depression. It’s hard to be depressed when you have pets as silly as mine are. My three dogs are really enjoying the cooler weather and are up to all kinds of “no good dog” behaviors. Yesterday they spent half the day bouncing up and down beneath a tree where a squirrel was nailing them with walnuts. They’d hit the tree, some nuts would fall down and they would run away in a panic, then come back and do it all over again. So silly. I moved my frogs and fish into my “rest room” (not the same as the bathroom) and they keep me company. One fish, Crown, is kind of boring – he just sits there waiting to be fed. The other one, Royal, gets all excited when I’m sitting here flipping around, coming to stare at me, flipping around again. He’s silly too, but the silliest have got to be the for African dwarf frogs I have. These little buggers have lived FOREVER, and are SO FUNNY! They scoot all over the place and sing at me when I come in the room – Wee-ee Wee-ee. It’s so CUTE! They aren’t much bigger than my thumb nail but they can pack some serious singing into their little bodies! (They are singing at me right now Breee-ee Whee-ee!)
Speaking of singing – check out this video for a little inspiration on what you can do if you really want to…
Norb I haven’t been on Second Life much this week but I have not had problems with it crashing. You may need to clean out your cache, or it is possible your video card isn’t keeping up. I crash a lot when I have other things running besides Second Life – it’s such a memory hog! Depite my lack of productivity I am still selling tiny little houses and I made a whopping $25 last month! Right now I’m working on Bayou Bumper Boats – bumper boats in a swamp theme. So far I’ve got the design done and I’m adding the jumps and stuff. If nothing else I can go ride them myself when I get bored! And it’s endlessly entertaining to be able to lie in bed imagining all the things I can create when I feel up to it.
Wow, long post, my fingers are numb now but it’s the little sacrifices that keep me sane. 😉
Take care ya’ll, keep looking for things that make you happy! 😀
AnonymousSeptember 18, 2007 at 11:07 am
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.
AnonymousSeptember 18, 2007 at 11:09 am
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.
AnonymousSeptember 18, 2007 at 11:40 am
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.
AnonymousSeptember 18, 2007 at 11:52 am
I got the dwarf african frogs at Petco. They do not need oxygenated water so are quite happy in the wide punch bowl I have them in. They like to hide so I’ve got lots of rocks and castles for them to hide in. They eat “Frog and Tadpole Bites” that you can get at the pet store, as well as “BloodWorms” which are nothing more than dehydrated mosquito larvae. (to think I actually pay for what I could scoop up out of my abandoned pool) They are cheap, like $4 each and the food costs the same but lasts at least 6 months. Plus they SING! The Betas are pretty and Royal is feisty but not as much fun as the frogs. You can actually train them too. I have been fortunate that they have not bred in the 2 years I’ve had them, I can’t imagine what I’d do with 20+ more!
If Carol likes green tree frogs I can give her hundreds next spring. Our pool has been more or less “closed” for several years. Even if it were not 30 years old and in rough shape the water is too cold for me so… at any rate for the past two years the green tree frogs have been enjoying their mating pond. The result being so many pinky-nail sized, I mean LITTLE BITTY froglets, that you can hardly see the side of the pool. Last year I stuck my arm down on the side of the pool and within a minute I had at least 10 clinging to me. I would have kept a couple but I have no idea what to feed them except live insects and I’m just not up for that. (yech!) Anyway, nature has taken over at our household since I’ve been out of commission. We used to live in harmony but now they are taking over. At least the frogs and spiders eat the other insects but does anyone have a safe method for locating and getting rid of a hornet’s nest? Holy cow they are EVERYWHERE and I used to be allergic…
Cheryl, Second Life is a 3D online world that has gotten so popular Reuters has a webpage devoted just to news about and from Second Life. The best thing to do is check out their website ([url]www.secondlife.com[/url]) and go to the Second Life Grid page – this explains why on earth you might be interested in joining if you are completely unfamiliar with 3D chat rooms. If you are already familiar with 3D chat rooms (which I was not) then you will be right at home. People get different things out of it, lots of real businesses use it as a virtual interface, I meet my long distance friends there for happy hour at the virtual bar that I built, and other people just use it basically as a game. I was intimidated at first but the big draw for me was the ability to do 3D building in a way I’d only dreamed about. And trust me I’ve had plenty of time to stare at the ceilings and think about things. I’m not an architect or ever had any desire to be one – but I like to use my imagination and the older I get the younger I act. I don’t really explore Second Life much but here is a website that can give you a preview of what there is to do and see…
On the right hand column she has a multitude of blogs on how to do things and places to see. She recently visited and wrote about the 9/11 memorial someone built – complete with names and photos.
Anyway, it’s a distraction and something fun to think of when I’m not too depressed or sickly feeling. 😮
AnonymousSeptember 18, 2007 at 4:34 pm
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.
AnonymousSeptember 19, 2007 at 12:24 pm
The doctor told me yesterday that they are still waiting for approval from my insurance company for the IVIg. Good thing I’m not having trouble breathing – it’s been a week! I’m still going downhill though, each day my muscles are a little weaker but it’s slow so I’m not panicking about the IVIg yet. :confused:
AnonymousSeptember 19, 2007 at 5:44 pm
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
AnonymousSeptember 21, 2007 at 8:33 am
Still waiting, I sent another email to the doc this morning asking if he can speed it up a little. I’m starting to feel spasms and numbness in my rib cage. Not all the time but it’s been a year since I’ve felt those little signs…
My family and friends are trying to talk me into a wheelchair so I can get out more. I don’t need one all the time but they think I will enjoy life more if I don’t get so worn out every time I go out. Any advice? Should I rent when I need it? Get a prescription and buy one? Is there any way to make it look like a Harley or something more inventive than a chair with wheels? Vanity…
AnonymousSeptember 21, 2007 at 9:09 am
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! 🙂
AnonymousSeptember 21, 2007 at 10:21 am
[QUOTE=Julie]Is there any way to make it look like a Harley or something more inventive than a chair with wheels? Vanity…
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.
September 21, 2007 at 10:40 am
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
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