Your Replies

  • May 23, 2010 at 11:51 pm

    Lots of prayers, hugs, and positive vibes heading your way!!!:D

    Now remember, with the sunshine today, we should have a nice cold breeze followed by hail if the weather holds;)

    May 23, 2010 at 9:05 pm

    Rossana – it is a great blog and so wonderful of you to share it with those of us who wonder and await this procedure.
    Can you give some detail as to who is considered a candidate and who is not? Do the docs at NW have a criteria/checklist? I was told 5 years ago that since IVIG has worked, that would be my course of action. This was by Dr. Heller who has since quit private business and I believe is working under Dr. Burt still.
    But as I hit my 100th treatment, there is no doubt the ole veins are wearing out:eek:
    Stay strong and I hope you had a chance to peek at the sun today!! This is why I love the midwest…all those miserable days are forgotten with the gorgeous temps we saw today ๐Ÿ˜€

    May 18, 2010 at 2:24 pm

    I just read your blog and saw you have Dr. Burt – he is the leading man with all this. I still have an article about him and his procedure from Sunday Oct 12, 2003. At this time, he had done 80 stem cell transplants (more than anyone else in the world) with ‘dramatic results’.

    May 18, 2010 at 2:18 pm

    Sorry you have to experience the ever changing midwest Spring while doing your chemo:( My parents have a place in Daytona Beach and I know I wish I was there now!
    But welcome to the north and I hope you are getting some results. Living here has given me a great chance to see the docs at NW and they are leading the battle against auto-immune illnesses!! Stay strong and I hope you see results sooner than later!!

    May 18, 2010 at 2:12 pm

    After I miscarried, it took us 6 months even though we had conceived so easily the first two times ( I had a 2 year old at the time).
    It’s a horrible yucky thing to go through and so many people thought by telling me statistics and numbers of how normal it was was supposed to make me feel better.
    I had to come to terms that I didn’t do anything knowingly wrong. After I relaxed and began to forgave myself, it seemed like I became pregnant at the right time for us.
    It wasn’t until I held my next daughter in my arms that I completely forgave myself. Once she was born, I fully understood how complicated but special carryng a baby to full term was.
    Unless you feel something is wrong, I would wait. It sounds like you’ve seen enough of doctors, dear, and may just need some time for you and the hubby.
    Unless you are feeling GBS symptoms, spend your time on the two of you!

    That’s my advice and my hubby’s would be the same as he went through it all with me. The only thing he would add is to “practice, practice, practice” but that’s my hubby for ya! We now have 4 children and each one is so unique and precious ๐Ÿ™‚

    Good Luck and keep us posted – baby news is so happy to hear!

    May 18, 2010 at 2:03 pm

    After 8 years of CIDP and monthly IV infusions, here is my positives:
    1. Gained a better relationship with my family back home who we see once a month now ๐Ÿ™‚
    2. Understand health insurance better than most customer service reps and am very proactive in my health care overall.
    3. MOST IMPORTANT – changed the course of my professional life from a civil engineer to a homeschooling mom of 4 and couldn’t be happier!
    4. Met some AWESOME people on this forum – some have passed but they made lives brighter when they were here!
    5. My level of empathy for those with not obvious handicaps has greatly increased as has my patience.
    6. It’s true – docs don’t know everything.
    7. Miracles happen!

    Great thread!!

    May 28, 2009 at 5:21 pm

    I tried boots too thinking that if my foot stayed at a right angle, I wouldn’t trip.
    I found the boots to be too heavy to wear comfortably. I have a lot of muscle atrophy and the weight was too much. I also couldn’t get the boot to bend when I stepped off because the sole was too thick. My gait resembled a duck…a very heavy-footed duck ๐Ÿ˜€
    I always say try whatever won’t break your bank or neck! They may work for you. I do use wrestling shoes around the house every once in awhile – they lace up and are very light-weight but are not good for any sort of long distance walking.
    Let us know what you decide and what works!!

    May 21, 2009 at 4:21 pm

    As a mom of 3 little ones and one on the way, I have no advice but I do empathize. It’s hard being the caregiver when you are exhausted as soon as you wake up. I often say, “I’ll sleep when I’m dead” because that truly will be the only time I take for myself;)
    I love my life and my family but the two are a lot. I’ve learned to have the older girls help where they can and live with the fact that it wasn’t done how I would do it, LOL! I also downsized the house which really made a difference. When we bought this 5 years ago, I only looked at ranch-style homes and I heavily weighed in how far I would have to carry groceries from the car to the kitchen. God was looking after us and we found this home that belonged to someone with MS – handle bars in the shower, front steps were removed and a ramp put in, etc. It changed our lives!! (our previous home was older and ALL stairs).
    Keep putting one foot in front of the other! I haven’t found time in my day for this thing called rest but I know someday the home will be empty of little ones and I will reflect back that we did a lot together…while resting of course.:D
    Connor and your hubby are lucky to have a mom who wants to be a mom. So many seem to forget what is important and the time you spend in the dugout WILL be remembered when Connor is older. Great Job!!

    May 21, 2009 at 4:05 pm

    I’ve had 4 pairs of custom AFOs from Hanger and I have discarded all of them. They were normally more than what I felt I needed as they went from toe to knee. Plus they were incredibly hot and uncomfortable.
    So I went looking and found cheap ones on ebay that I have used for the last 2.5 years. In fact, when I went for a check-up, my pt commented on how I finally got used to my AFOs. I lifted my pant leg and LOVED the look on her face when she saw I had replaced the $1000++ AFOs with a pair for less than $50.
    They are called SWEDISH AFOs and I found them on ebay from a seller called ape medical supplies. I buy an insert for arch support (found at FootSmart magazine) which easily fits inside. I trim them down to below my toe knuckes with a pair of kitchen scissors and they are flexible enough that one can use a hot air gun to help give them a more custom fit. I haven’t needed to flair them out and have about 4 pairs for each of my shoes – everyday, church, boots, outside.
    I love them because they are so less bulkier than the other pairs and they allow me to use what little muscle I have left instead of making me completely dependable on a pair that did all the work.
    They are considered ‘super-flexible’ and may not work for all but at $50, they were worth the chance for me. And I wear them everyday now instead of the others which I wore only when forced to due to longer distances. It is so nice not to have the ‘high-step’ and walk unknowinly amongst the masses.
    In fact, a friend I met last fall had no idea I wore them – that was the nicest compliment because my other ones were so bulky, loud, etc that it ws hard not to.
    I hope you find something that works for you!!

    May 21, 2009 at 3:54 pm

    Congratulations! My older two are girls and have become each others best friends as the years go by ๐Ÿ™‚ I’m really happy to hear the delivery was easier – for your second, you deserve that!
    Just watch yourself over these next weeks. While I had a relatively normal pregnancy with the last one (besides having CIDP that is, LOL), I noticed about a month after delivery the symptoms came at me hard.
    My doc said that while the immune system is naturally suppressed during pregnancy, following pregnancy it swings back to normal. Well, normal for a person with CIDP = overactive and the tingling, muscle weakness, etc hit quick and hard. I dismissed it initially as being tired but my doc put me in pt right away with a week of IVIG to boost me.
    Listen to your body even when you are too tired to care. And kiss your girls as much as you can!!! Again – congrats!!

    May 12, 2009 at 8:35 am

    Just wanted to stop by and let you all know that we are expecting Baby #4 this July. Although it was a shock to find out at first (I thought I was dying of the flu, LOL), we are very excited about the arrival.
    A few months back we found out that it is a girl and she wouldn’t stop slapping the ultrasound high 5s! Doc said that is a good sign ๐Ÿ™‚
    Although it was a little more tiring already having the other 3, they have been helpful and are anxiously awaiting the arrival of their little sis!
    Don’t be afraid to live your life whatever you are dealt – you can do it!

    May 12, 2009 at 8:31 am

    Congrats on the pregnancy – children are so much fun!

    August 17, 2008 at 12:45 pm

    It’s so cute to hear mom’s commenting on the fun we go thru while we are pregnant. And regardless of all the craziness, just the sight of the new one erases all the discomfort. Well, almost, LOL!
    Make sure to use your 3 year old ~ mine loved helping in any way. There are so many wonderful bonding moments.
    Enjoy the tap-dancing babe and I hope for a quick delivery. And don’t over-nest!!! I know you want things perfect but all the prepping in the world isn’t worth mama being tired:)

    July 12, 2008 at 7:15 pm

    I’m so glad that you are almost at the end…the baby in your arms after the delivery makes it ALL worth it!

    I’m glad that you have one supportive kid to remind you that you are doing all you can in your state of health.

    It’s hard when one has an internal illness – it’s not like a cast on a broken arm where there is a visual reminder you are not at peak performance. Unfortunately, you can’t slice open your body and show the inflammation and nerve damage. Even my husband will admit to forgetting at times I have limitations and he tells me, “But you look healthy!”:D

    Not to mention, being 13 means that there is so many changes going on both hormonally, emotionally, socially, and all those other -allys that make teenagers so much fun, LOL! It must be rough for him to see a once healthy parent not being able to do as much but he still should not voice his discontent in such a manner. It’s not fair to you, your youngest, or the rest of the household. I’m sure you don’t want to be laid up especially with the baby due so soon (those nesting instincts really kick-in, don’t they!!).

    It sounds like he is upset because life as he has always known it is now changed. And the baby will only bring more changes.
    I would remind your teenager that your husband could not possibly afford to pay your salary as a mother and you work for free. ๐Ÿ˜€
    You do have limitations but most mothers I know excel at challanges so I wish you the best of luck.
    Keep us posted and CONGRATULATIONS!!!

    July 9, 2008 at 9:47 pm

    Oh, nothing is better than a baby especially one in the summer! How lucky you are!!
    With pregnancy, our bodies do all sort of weird things … just wait until post-pregnancy, LOL!
    I hope you find some answers because stress is the absolute worst thing for anyone especially an expecting mom. I don’t necessarily agree with your doc about the body doing most of the work itself. I was very happy on my Epideral and still had to push like mad to get the boy out:D

    I have read over and over that a woman’s body’s immune system is naturally surpressed during pregnancy. It is the body’s way of not aborting the baby so in theory, those suffering from an overactive immune system should receive a break since the immune system is taking it easy.
    I found this to be true in my pregnancy.
    I felt better than I had in so long. I was determine to just stay pregnant forever:)
    Several months after the pregnancy was over, I did find myself relapsing. I did pt again and ended up in AFOs permenantly in April of 2007 along with problems in my hands. This didn’t surprise the PT specialist…she said many women have symptoms of carpal tunnel during pregnancy and those with nerve inflammation illnesses do severe/irreversable damage.

    However, if we could post pics of the kids, you would see that there is not a moment in my day I ever regret having another child. My eldest 2 are so helpful and compassionate that my fears of them having a disabled mother have all but disappeared. In fact, I would love to have just one more but we’ll have to see about that!
    Enjoy your pregnancy because it is truly a special time that not everyone gets to experience.