I’m GREAT but not WELL!!!

GREAT – But not WELL????

What does that mean?questioning face cartoon

Since I posted my update yesterday I’ve realized that telling people I’m GREAT could be misleading. I’m not healed — and I’m not even “better” as far as my PNE or my IC. The pump doesn’t “fix” those things. My pudendal nerve on the left side is still messed up, and I do have breakthrough pain when it hurts and I have to rest or just “get through it.” I still have interstitial cystitis, which means my bladder lining is basically non-existent, and there are times when I feel pain in my lower abdomen. It’s usually worse in the morning and lessens during the day. It’s just a dull ache — but it can be worse if I’ve indulged in acidic foods like coffee, vinegar, lemon, etc. I don’t always have consequences, but when I do, I drink water and hope that it will feel better soon!

So I’m by no means “well.”  😦

There are also side effects to the medications. Because of the bupivacaine, I have incontinence from having a numb bladder and “relaxed” urethra. I wear pads during the day and I am awakened several times in the night to empty my bladder. This is the most severe side effect I have experienced. However, this is just an inconvenience as far as I’m concerned. When the medication was adjusted to improve this side effect, my pain shot up and I asked my doctor to put the medication back where it was. I can function with incontinence. I cannot function with pain!

So, what I wanted to convey is that, while the pump has been a wonderful solution for me, I understand that it might not be the same for others. You have to be in bad shape before taking a step like having a pump – or stimulator – placed in your body. I know I had to be at a high level of suffering before I would consider it. By the time I was wheeled into Dr. Prager’s office, it was a last-ditch kind of intervention. I was in a reclining wheelchair, my pelvis packed in ice and a heating pad on my abdomen. I could not sit upright, I could not stand, I could not walk. My husband and my sister were with me, hanging on to the hope that maybe this time something would be different, maybe this doctor could actually help.

So, I hope this provides some perspective on what I mean when I say I am doing GREAT!!! images

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3 responses to “I’m GREAT but not WELL!!!

  1. Hi,
    Yes I hear yah!! I say many times “oh” Great praise God. Many times God gives me the strength especially when he fills me with joy I can carry on with the rest of my day. I’m due for Pudendal block 7/8/15. had the Gangaloin block it helped 30% now lets see how this block works. I don’t wont to get a pump I said no to the stimulator I’ll use the exterior one, thank you! & takes meds for my neck condition.

  2. Hi Nicole
    Thanks for your comment. I understand how you feel about not getting the pump or stimulator. I hope your pudendal block is very successful. 😄

  3. Thanks! I’m tires of feeling the buuuurn……I have a teenage son at home that needs me field with God’s GRACE…CALM not uptight with very low tolerance & hormones off balance cause I had hysterectomy ovaries R out. Now it’s both of us with raging hormones except I would rather have my 15 years old son’s raging hormones any day. LOl !!!!!!!

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