Declining and I’m worried.

    • Anonymous
      September 9, 2007 at 9:29 pm

      Hello everyone.

      To bring this all up to date…3 mos or so I guess, ago, my neuro released me as I was weaning off steroids. He said we’ll wait and see what happens and if anything changes, call. I’ve done Ivig…it didnt help improve anything but didnt let things get worse. The high dose steroids also did not help. He thought maybe I was in a remission or that the attack had burned itself out.
      Whatever that means.

      I had been doing well. Actually carried my four year old up some stairs a few weeks ago…I was elated with that accomplishment.

      Eight weeks ago, a bomb dropped and my mom was dx’d with lung cancer. It’s been a long haul with her recovery and I guess not recovery as she is not fighting and doesnt get up to do the things she is supposed to. Recently she was back in the hosp with pnumonia and back home again.

      I spend every day over there after work until late in the evening, sometimes later. I spend the weekends there. I cook, clean, help her bathe, whatever needs to be done. I spend very little time at home. Little time with my son and husband.

      We are scrambling now to find friends to help maybe stay the night with her b/c we just cant do it. I have to be at work by 530a and work till 3. I dont get home to my own house till bed time.

      Over the last few weeks I have noticed my legs getting heavier and heavier…stairs more and more difficult to climb without holding on to the wall or the railing. My feet are completely “frozen” in that there is no movement in the toes and they are bending or squishing together. I have pain in my legs and my pain has always been intermittent and not very “bad”.

      Friday after being at the hosp with mom, after working all day, I went shopping to finish up for my sons bday gifts. I was at the last store, the second Walmart that night, and both of my feet were flapping. Usually it’s the left. I would never have been able to walk without a cart. My walk alone is becoming slower and slower. I have to hold on to walls and railings going up stairs.

      Today they arent both flapping – just the left – and I slept a bit more last night bc my mom was in the hosp. She’s home now and I just got back from there and have to do the bath routine and get my sons treats ready for school tomorrow.

      I have pain in my legs now from the inner thigh down…used to be just the knee down. My left hand, that i write with, isnt wanting to cooperate either.

      I know I need rest. My hubby encourages and is doing as well as he can to help. It’s my sisters and mother that doesnt understand my disease….I’ve explained but we’re at a point that it will seem like I’m using this as a reaon to not help with my mom.

      My mom has become so selfish that I dont think she even cares. That’s not her usual self. It’s her sick self being scared and poor me attitude. I can understand. I really can.

      If I walk away, it leaves only one sister to help b/c the other is never around.
      We cant hire help bc the money isnt there.

      I’ll call my dr tomorrow and explain…maybe a boost of IVig will slow this down.
      Maybe I’ve over it done and there’s more damage happening that wont get better again.

      I wanna crawl under a rock or fly far far away. Wouldnt that be nice.

      what would you do ?

      please remember my time is very limited….I work fulltime, have an almost 5 yr old, husband, home…and another we are trying to remodel in order to move, an ailing mother that isnt fighting…and now I find myself fighting to fight, too.


    • Anonymous
      September 9, 2007 at 10:27 pm

      Is there anyway you and your family can get together to discuss a schedule and plan that everyone is part of? Maybe make a rotating schedule of who gets Mom when so that there are breaks? Also, does your moms oncologist have a social worker available to help immplement some services? I went through this with my Dad and lung cancer 3 years ago and frankly that was when things got really bad for me because I was not focused on myself at all. I don’t regret it but I think taking advantage of more help would have been good. It sounds like you are in a really tight spot. Please try and research services that might be available through the Cancer center or hospital where your mom gets treatment. There may be volunteers available or agencies that you are not aware of. I hope this helps. I hope you can sit down and talk to your siblings in order to explain your needs. Good luck.

    • Anonymous
      September 9, 2007 at 11:42 pm


      I, do understand you feeling the pressure…it’s enormous. My sister is going
      through lung cancer with pneumonia on top of it, as well. Your mother is
      surely scared, because she will die from it. Our disease doesn’t have such a
      dramatic ending. My sister called our aunt in another state to come down
      for two weeks to help. She cleaned, ran errands, etc.

      You need help from the family or friends. There is no other way around it.
      You are going to stress out more and it will exacerbate the disease. You
      just cannot do it all. It’s impossible.

      Maybe your husband could watch your mother two nights while you take some
      time to relax, sleep, or just be by yourself. You need to take care of YOU!!!

      I hope this helps somehow…you need to be stress free so you don’t end up
      in the hospital.

      Take care…of you.

      Miami Girl

    • September 10, 2007 at 10:03 am

      I feel your pain regarding the caretaking situation!!!! I have just had (another) epiphany this weekend! SCREW IT, IF NOBODY ELSE CARES, IDON”T EITHER! My inlaws are also very sick and they live behind me!! ARGH! I cook, clean sponge bathe (rareley but I have) and it is not even my parents! There are four other children not including my husband! WHERE the **** are they!!!!! THe thing that is hard about relinquishing my need to help, is that it is just not in my nature to stand by and watch someone need help. But I am going to have to! My father also has recently taken ill and where is my brother regarding help? NOWHERE! OH YEAH, he is going to Belize and just returned from Colorado. The point is, there will always be selfish people that take advantage of people like you and my self. I decidied that God would not want us just rolling over and taking it, he would want us to be strong.

      The only solution I see for you is to print out info from this sight of others in your condition, and those who are worse and have your mom and sister read it. If this does not help with understanding your illness, than that is their problem.

      I must add, I obviously do not have what you have and it is VERY hard for ME to keep up, three households! Your mother is going to be hard for you to pull away from, I understand. But you have to!! Your mother has already lived a full life, you have not, you have your beautiful baby, and all the milestones that come with mothehood. YOu mentioned your mom is not herself, I am sure she is still in the anger phase, as are you! I am too!! Maybe some day she will realize that she is being selfish. Until that day, you have to realize it and help yourself. You will be so much more appreciated when you are missed, and you will feel so much better when you take it easy.

      Regarding your sister, certain people are just born selfish, it will never change. It may be too late when she finally realizes it. It may take you pulling back and her stepping up to realize just how selfish she was. Let her scramble to find someone to stay with your mom!

      let her go after work. Be firm, tell her you can’t do it any more! I did that to my sister in law this weekend and have not called or been to my in laws since THursday. It was a weight lifted off my shoulders!! Maybe she will appreciate me now!!

      I always think about you and how you are doing, I will continue to pray for you to find stregnth to make it through the days!

      Dawn Kevies mom

    • Anonymous
      September 10, 2007 at 11:01 am

      Hello Stacey,
      First off, I know from my own reactions, IVIG does not always make you feel stronger and better, another very important purpose is to CONTROL the progression. I would guess right now that you are OVERWHELMED. This has happened to me and my fatigue goes sky high and my numbness is so severe I draw in my breath. YOU MUST FIND A WAY TO TAKE CARE OF YOURSELF. IN ORDER TO HELP “ME” WITH MY MOM’S CARE, WE HAVE A HOME CARE AGENCY HELP HER. If it’s affordable, please consider getting a home care agency to help with your mom.


    • Anonymous
      September 10, 2007 at 12:22 pm


      A few years ago, my mother passed away after a struggle w/cancer. The drive to my dad’s house was 55 miles, after the day’s work was done. Then, my daughter fell ill w/cidp. I UNDERSTAND YOUR BURDEN – and I am a healthy energetic adult. The stress of having to be in two places all the time, worring if you can do it all will take its toll on you. I don’t know how you’ve been able to keep up this pace – but it can’t last forever.

      More than anything, right now you need some time for your recovery. Would your employer allow you to work only part-time during this difficult time? I don’t know what type of work you do, but flexible work arrangements could include you working at home part time and reporting into the office a few days a week. I made this arrangement and it can work. I work from a home office part-time and on the road part time for my employer – this was the only way I could care for my daughter and make a living. Fortunately, my sister was able to move in with my dad to care for him when the going was rough.

      I wonder what creative way your sister could help out? Does she (the one not around much) have skills that could be helpful – for example, could she help by inquiring about the Nebraska Medical Assistance Program Services, or investigating other local sources of assistance. (meals on wheels, visiting nurses, etc.) The time and paperwork to satisfy the requirements for assistance can be a worthy contribution. She would not have to be physically present to support you and your mom.(but it would be great if she could)

      [QUOTE=ConnorZmom] It’s my sisters and mother that doesnt understand my disease….I’ve explained but we’re at a point that it will seem like I’m using this as a reaon to not help with my mom.

      Stacey, I apologize for my next suggestion, but have you asked your sister if she has a valid reason for not helping with your mother? I ask in the spirit of kindness: Sometimes, a family member will stay away when someone is gravely ill because they are afraid – have a heart to heart talk with her and let her know that you are carrying the weight for both of you. Your sister might have a chance to BECOME compassionate if she were forced to DO something compassionate! Don’t feel guilty when you can’t do more.

      One last thought: can the three of you (your sisters & yourself) contribute enough to hire an assistant for just one day a week (preferably a weekend day) to provide a little time for yourself? –mabe a med student that has the maturity and/or experience? Each weekend the assistant cares for your mom, you could rotate being “on call” if needed. Taking a break can replenish your soul as well as your body – you deserve a day for yourself.

      You have been so strong for your mom – whether she expresses it or not, I’m sure she recognizes that. Cancer robs your mother of mental strength as much as physical strength. Your compassion will be a source of peace for you in the future in the knowledge that you made a huge impact on quality of life for your mom. I wish you the best, and hope you find a little relief for yourself.

      Best wishes and prayers,

    • Anonymous
      September 10, 2007 at 8:18 pm


      Remember,you can’t help your mom thru anything if you can’t help yourself and your family first. People with CIDP or GBS have no and I mean no energy reserves like “normal” people do. If you get exhausted it has serious ramifications, meaning a worsening of the disease, or lasting symptoms.
      You are probably correct in thinking your mom isn’t thinking of what you’re going thru right now, she’s probably very, very afraid not knowing what’s going to happen next. all you need to do is understand that.
      If she has siblings, or you have any sibs, a meeting should be scheduled to discuss the situation. Think of a home health agency getting involved, or if her situation is dire, a hospice, they are absolutely wonderful and can offer much emotional support to your mom and the family.
      Hope this helps,

      ps–Of COURSE, call your neuro about your symptoms getting worse:)

    • Anonymous
      September 10, 2007 at 10:57 pm

      My dear friends,

      Thank you so much for the response and advice. I’m working on things but another loop has been thrown into the mess. My son is five today and luckily we had his bday party Saturday. I picked him up today from preschool only to find him with gunk in his eyes and that got worse and worse within two hours. We went to an after hours childrens urgent care and he has bacterial pink eye…bad…and an ear infection and possibly strep. No mention of an earache but he did say he had a sore throat and headache last night and this morning. His dad gave him ibuprofen this morning and he seemed fine. No fever.
      95.00 later, he’s got meds. And, I have to miss work again tomorrow. Hubby is going to try to get the afternoon off so that I can go in then. I’ll have to work Saturday now, too, to make up time I miss.

      Connor was at my moms as the eyes really began to ooze. So now she is exposed to all of this, too. The pink eye is no big deal…just a nuisance mostly but so contagious !

      ug. At least we can snuggle on the couch for a while in the morning. A sad way to get some rest…but I’ll enjoy my time with my baby.

      I’ll write again soon to udate on myself. I have an appt with neuro tomorrow at 4.
      No change with my mom .

      You are all so wonderful.

      I’ll be in touch soon.