Friday, June 13, 2008


The pain medications have really had their way with me. They have made me gain some weight, and they have all kinds of other side effects. But if you were paying attention here, you'll know why I need them (especially because I've had spinal taps and spinal injections....apparently a no-no with this condition, but my doctors don't seem to know much about it).

Today the pain isn't so bad, and yesterday it wasn't so bad, but the sleepiness is maybe related to the pain medication or maybe not. Since I only take the strong stuff at night, I don't normally feel sleepy from it. Well, for the last two weeks, I can barely keep my eyes open during the day. I took 2 naps almost every day this week - lunch time and after work. I feel like a slug. So I am going to see my doctor today, my internist, to see if he wants to run some bloodwork. The reason I'm afraid that I'm bleeding somewhere is that I took some Aleve off and on for a couple of weeks after Memorial Day. Because I was having joint inflammation, I figured a few NSAIDs wouldn't hurt (though my chart in every doctors' office is flagged "No NSAIDs"). The reason? I have a condition in my small intestine called angiodysplasia, a condition normally found in the colon. It is a malformation of the blood vessels that makes them prone to bleeding because they are just under the surface. A little bleeding? Not so bad. But I had a torrent of blood rushing from my body on February 25, 2007 that nearly took me with it. So ... no NSAIDs. They could make my blood too thin to clot.

Stepping on the scale this morning I found that I'm 9 lbs over where I stopped July 4, 2007 (the last day of my diet). I immediately got online and ordered a month's worth of the diet food. It's either that or I start going out and buying fat clothes again, and I'm not willing to do that. Hopefully the doctor will find that I don't have any reason in my blood work for the fatigue. Could just be the weather + meds + being a few pounds heavier. Who knows, but I can't go on like I have been the last 2 weeks, sleepy all the time and fighting to stay awake.

If I fall asleep at the blog keyboard, please nudge me!

Meanwhile, I left another message with the secretary at the neurosurgeon's office. Doggone Johns Hopkins! Why do they have to have such a lag time for returning calls or setting up appointments??? Here I am, mentally preparing myself and physically trying to keep going, and they? Don't return my calls. It's Friday. I'll try again today and see if I can get in to see him soon. Most people I've heard from who've had this surgery say that it is a miserable few days after the surgery, but that it gets better from there. The symptoms never fully resolve, but life is made bearable again. One girl I heard from had just done a 3 mile hike on in a hilly area the day before she wrote to me. The last time I was able to do something like that was in 1992, before the worst of the symptoms started. The place? Diamondhead crater in Oahu. Now I have trouble walking on uneven surfaces and even more trouble doing any kind of sustained exercise. I want to be able to do that again. Maybe someday they'll get me in to see the NS again and I'll have a chance.

But for now the preparation goes on, in my heart and mind. When they call, I'll be ready.

Peace - D


Daryl said...

Keeping fingers crossed they get back to you soon... sending positive vibes and gentle hugs!


Lavinia Ladyslipper said...

Lotsa lotsa hugs to you...I wish with one wave of my hand I could take all this pain and discomfort away....

Please continue to take good care of yourself and chase those doctors down...I know it can be tiresome and has to be one's own health advocate these days, it appears.

Keep us posted, and I hope the weekend sees things looking up for you....

Maggie May said...

You seem to have to put up with a lot, don't you? Hope you get this thing sorted. Sending gentle hugs your way so as not to hurt you!

Momma said...

Daryl - Thank you! No calls yet, but I'll leave another message Monday...

Lavinia - I will be fine, I'm sure. I talked to my internist today and he understands why I'd want to have the surgery. He is very supportive.

Maggie - God has given me some special challenges so that I can grow. I figure if I talk about these things, it might help someone else, you know?

Peace - D

Childlife said...

So sorry to hear you're having such a rough time with pain meds -- and I hear you on the doctor call-backs! Drives me crazy when they don't call back :P Sending you prayers that everything goes smoothly and your recovery is quick!