Thursday, August 7, 2008

Ups and downs

It's been a rough day, well night technically. I was up from 1:30 - 5 crying both from the pain and the overwhelming desperation of it never going away. The day has been filled with counting the minutes until the next round of narcotics; the whole thing is ironic, counting down like that, since it hasn't been taking even the edge off at all this week. So why do I bother? Strange. Maybe it's hope. I don't know why there's any left of something working.

I was supposed to be at my CDP (computerized dynamic posturography) right now but DH's schedule changed to 4-10's for the first time this week. That also means my 3rd opinion consult has been booked out another 6 weeks. I spent the week in the hospital for the seizures in May, out of seizure meds in June, and no appointment until the last week of September. They don't care one bit about not having meds and having major seizures around the clock day and night.

For those asking about the dog update, Cookie the little beagle I found out front went to a foster home a couple streets away with someone from a rescue group. My dogs were very happy, as was Cookie.

I finally got myself to the shower today. It's a sad truth of chronic illness, not being able to shower regularly, despite the shower seat. I shook from start to finish but at least I'm clean again. I feel awful always going so long between and I hate admitting that in public but that's just how life is with this.

The big shock of the day came just a bit ago and I have to share. It's been the day's saving grace and already a weight off my shoulders, a great blessing.

Earlier this week there was the usual stack of fliers in DS and DD's backpacks, the papers that are distributed to the whole school. One was about a Meals on Wheels-type program serving only the school community. Apparently we were suggested as a family that would benefit from their help.

I was speechless. My initial reaction is feeling we would be taking away from others in need. At the same time, I know that living a life where showers are an occasional luxury and crying in pain for 3 hours is a reality not just a bad dream, means we are in need ourselves.

And so, every Wednesday the wonderful people of this group will bring us a meal.

Despite the hardships, I know we are still blessed.


  1. Keesha...
    I'm so sorry to hear about the pain and uncontrolled siezures you have been enduring. I know you have been going thru alot lately. I have been following your blog.

    You are such a caring,
    compasionate,concerned woman. You have offered kind words to so many people who needed to hear them...just to hold on to "hope".

    Sometimes words aren't always what people need...sometimes its someone to share your tears with.

    I want you to know..That Iam always here to share your tears..

    In my thoughts and prayers..

  2. I am glad the beagle found a temporary home. In knew that you must be in a bad way for us not hearing from you in such a while. I am finally getting some relief from what started to become pulmonary candiadisis. It is in my bronchial tubes. I am on two drugs to try to clear it up. My lungs are pretty rough, but at least the swelling in my throat has gone down. Keesha, hang in there, dear, Sharon and I miss you a bunch and are wondering how Bubba and Meg are? and Sterl too. Love, Bobby, not the liver.

  3. Keesha...
    I'm from the ASAP board and have been thinking about you and wondering how you're doing lately. I'm sorry to hear you're dealing with so much pain right now. It just doesn't seem fair. I hope and pray you'll have better days SOON!

    Kim from Maryland

  4. Keesha, I wish there were something I could do for you. It hurts me to know you're suffering so much. I feel so frustrated when I read your blog and see that you're being denied access to the help you so desperately need. What a messed up state of affairs it is that money hold more value than a human life. The sooner universal health care becomes available in the USA the better.

    Keesha, you are a true inspiration. You have been a beacon of hope for so many others who suffer with these conditions, offering us not only a wealth of information and support but more importantly, your friendship. You're a woman of immeasurable strength and courage.

    Don't feel guilty for not bathing regularly. Anyone who suffers from a chronic illness understands how difficult those everyday things can become.

    I'm glad cookie has found a home, that's great news.

    I hope you and your family enjoy your Wednesday night meals, you really do deserve it Keesha.

    Dani xx

  5. keesha honey i am so sorry your suffering so much i wish i could make it go away i miss you and am praying for you and the children and sterling too. i hope you are able to get some relief soon darling i think of youall the time hugs sweetie

  6. Hi Keesha,

    You and your family are in my thoughts and prayers. I pray you are soon able to get some kind of relief from the pain and uncontrolled seizures.

    As for the meals on wheels, you do deserve it, so enjoy those Wednesday meals!

    I'm so happy to hear that cookie has a home. It's funny to hear that your dogs are glad to have their home back. You're such a caring and thoughtful person to take him in until he was picked up by someone else.

    I definitely understand the concept of having so much pain, you can't think about taking a shower. I've been there many times myself.

    My MIL is spending the month with us, to help out. She rubs my back throughout the day. I said to her, if I don't shower today, I'm going to start smelling. She was so sweet, she told me don't worry about it, and I don't do enough to smell. She said all that counts is trying to manage the pain. The same applies to you.

    She had no idea how much pain I've been in each day until she's now here to see for herself. She constantly says, she doesn't know how I do it. I tell her, I have no choice.

    Take care and hang in there, (((((hugs)))))


  7. I'm so sorry I didn't post sooner! You are in my prayers and I hope things turn around soon. *huggz*

  8. I want you to know I am praying for you.

  9. Echoing what everyone else has already said - I'm so sorry you're in so much pain. I do understand. I have EDS and Chiari, too (among other FUN things).

    I also understand what it's like to count showers in terms of "how many per month" rather than "per week".

    That's awesome that your family will be getting Meals on Wheels. What a blessing!

    And I'm so glad Cookie found a home. :)

    I found your site through the Pain Relief Network message board, by the way.