Thursday, January 20, 2011

Continuity of Care

Monday, January 17, 2011 09:04:24 PM

We made it to church yesterday.  I kept falling asleep; at one point Adrienne woke me up because I began to snore...

I haven't been writing much lately, not because I haven't anything to say, but because I have been too busy sleeping my life away. No matter how much sleep I get, it isn't enough. After church, I ate lunch then took a five hour nap. Then came dinner and off to bed I went.

I don't know what makes a good or bad physical or occupational therapist, but I always felt I had competent, if not excellent ones and I was fortunate to have them. And there have been plenty.  I had both kinds of therapists at University Hospital, a plethora of therapists at the Drake Center, and then throughout the summer, a succession of physical and occupational therapists came to my house.  I have had fifteen different therapists.

Being ill has been one big transition with countless smaller ones following. I remember wanting to cry with humiliation and indignation when I was told I could not receive my IVIg in Same Day Surgery. I hated not knowing where or when I would be admitted for my treatment-sometimes I stayed in the lobby for over an hour waiting for a bed to be available.  There was no continuity there.

There was so much going wrong with my life at that time that I scarcely noticed staffing changes with the therapists.

Once I started to recover, my life became more consistent; I was able to return to Same Day and also start out patient physical therapy.

My latest and biggest disruption was with the temporary physical therapist who replaced my regular therapist left for maternity leave. I have come a long way since we started last fall.From using a wheelchair to walking about with my cane. I have enjoyed working with her and I know that I am going to miss her unlike any of the other professionals, and that bothers me. 

Despite my feelings about working with her, it stings to be reminded that I am a patient, a client, not a peer to my therapists. This may be their job, but it is my life. Without my CIDP and the resulting disability, we never would have met.

I miss driving. I miss standing for more than a few moments without needing support. Despite my gains, there is so much I have lost and one of those things is the freedom to meet new people and get to know them without the fear that they will suddenly be removed from my life and I feel like I will always be on the losing side of that equation.

I feel guilty admitting this, but sometimes I get tired of being grateful.

I had to clear my throat before saying good bye on Monday. I wanted to say more than “Thanks, take care and good luck!” but words failed me; by the look on her face, she might have been experiencing the same. It is not any easier now than it was on then.

Please feel free to leave your comments below.

Thursday, January 20, 2011 11:18:22 AM


  1. I just came across your blog yesterday and have not had the chance to read very much, but look forward to doing so, your faith amazes me already and I have only read a few entries. I have a quick question for you if you don't mind, when getting ivig, how often and how much did you get? I am in the middle of a 12 week trial, had it 3 days the first week, and now once a week for the rest of the trial. I receive 20 grams each infusion (my dr bases it off weight and I only weigh 105lbs) I ask this because everyone I have come across says this seems like a lot of ivig, and it kind of concerns, but seems like from the little I read you received a lot too. I am sorry to ask a question on your blog when I don't even know you, I hope you don't mind
    Thoughts and Prayers

  2. Please to meet you Lela. Thank you for the kind words. I cannot remember how much my IVIg dosage is, I will check next week when I am getting mine. I know that it comes in 450 ml dosage and takes about 3 hours to get it. I get it once a week at the local hospital. At first I was receiving it 5 days in a room every four weeks.

    I am hoping that my neurologist will reduce the frequency when I see her next month. I would also like to go down on the steroids...

    I would love to hear more about you and your treatment, please feel free to contact me at my email:

    Talking to other people with CIDP has been a big help, although they are pretty few and far between around here.

  3. Hi, I'm leelee and I just found this blog tonight, rather morning, had a friend over and couldn't get her to leave, lol So i'm up. I see where you guys were saying things about your IVIG and saying it's too much. When i go, i go to the hospital every 3 weeks for 5 days for 4 hours a day. I call 30 min before heading there, so they can fax the order down to pharmacy, i get there, they access my port, i order lunch, eat it and sleep through the rest till my IV beeps. This all started in June of 2010.

    I had skipped the month of January because that was my followup and it had to get changed twice because of major snow storm, lol in Atlanta right? it was a mess, so anyway during the visit he said there was more weakness and that the IVIG i was taking was not working. So starting the 31st he is changing a drug in the IVIG and do that one for the next 3 months and see what happens. He said if that doesn't work, then there is not much else he can do, which means that i will slowly die. I have other autoimmune diseases that i am fighting with also, one of which is what caused my CIDP, so i can't fight even a blood transfusion.

    It's taken me a few days to wrap this around my head, but i am coming to terms with it. I think. Trying to think positive, that's what we all have to do right?

    I am glad i found the original blog, that brought me here.


  4. Leelee,

    I am so sorry that your struggles are so hard now.
    Faith has been the only thing I have been able to rely on this last year and I am happy you also have a strong faith. Even tho the New Testament has several references about making burdens light, this isn't how I pictured it before CIDP.

    Please feel free to contact me through email if you would like. My wife and I will be praying for you.

  5. Lela,

    Sorry it took two weeks get the information on my IVIg dosage, but here it is- 0.4 grm/kg, once a week.

    I hope all is well.

  6. No problem I have been meaning to email you but been feeling extra rough lately will try to get to it tonight yet, my paperwork says I am getting. 4g/kg (once a week now) too, but since my weight has been fluctuating give or take 10lbs a lot lately they have been sticking with 20g, basing it off my start weight
    Thoughts and Prayers