"Where is the moment we needed the most" ~ For me this would have been an awesomely working epidural/lumbar block today that actually took the pain away completely, instead of just numbed it and everything from my belly button down. It was definitely not what my PM wanted it to me, and she doubled it to get some sort of a result because I wasn't responding for the first round....crazy maybe, but I was there anyway..so might as well try to knock it out. It so didn't knock anything out except me. Even though my legs don't work I must of kicked up the leave and lost the magic there.
"You stand in the line just to hit a new low, you're faking a smile with the coffee you go"
This sounds like I need to discuss the deep depression I fell into, it's apparently part of the RSD thing, I kept meaning to call my Doc, per my sweet friends request, but I forget, because that's another wonderful about RSD, and so I haven't done it yet, but it's in my notes of things to do, if I remember to look at them..I know ARGH!
Today in the hospital I had a nurse grab onto my feet to check my strength, problem is I may not have extreme allodynia but still you don't grab the foot of someone who has RSD, and I told her, and she seemed to not really know what the hell it was. I was too exhausted to explain. I did ask her to be very careful with my left limb, that it hurt with not even much pressure. Then there was all the whispering about RSD, the Nurses asking me what my epidural was suppose to do for RSD. I wish that there would be more training for health care professionals in this area...."So you had a bad day...."
Ever notice the chorus of this song makes it seems like the guys telling her, "Yeah what ever you had a bad day, suck it up, I don't want listen to you carry on about it" I feel like things are like that in my house at times. Not all the time,don't get me wrong, I know my hubs loves me, totally loves me, I just don't think he understands what I'm going through and comparatively to his back and neck pain with his damaged discs he figures if he can cope I should be able to cope to, maybe he doesn't feel that way really, maybe I just think he feels that way, often times we don't really talk about how he feels, We seem to rely to heavily on my empathetic abilities.
I'm not sure what a blue sky holiday is, but as long as it doesn't belong having to make a decision between a sympathectomy and a Spinal Cord Stimulator, yay, I don't want that so much. It seems like there's n good choices for this rotten disease. My head is spinning...
Neurological Associations Four F's Diet
Chiropractic or Acupuncture
Lidocain Infusion
Topical Capsaicin or Fentanyl Patches
Hyperbaric Oxygen Chambers
Ketamine Infusions
really the SCS and the Sympatheticomy is my last choice.....
My Aunt has an SCS for her arm RSD, it doesn't help her, it has a 50-70% chance of a better quality of life. Sympatheticomy has a 30-40% chance of working...I don't know it scares me.
So I had a bad day..I can't work up a smile..I'm not allowed to go for a drive unless it's only 30 minutes and with this latest med, I really just can't...and so...where is the magic when I need it the most?
I hate RSD. I hate what it has taken from me (My job, My ability to play with my beys, over 20 pairs of cute shoes, the ability to be the Dancing Queen, the ability to wear a pair of jeans, running, walking, a foot that's not so cold and is a normal size and color...the list goes on)
I hate that makes me rely on my 7 year old son to take Care of me, bring me sweet tea and medicines, sometimes even feminine products...ARGH! It's embarrassing, but I say Thanks you, I'm trying not to be just the giver, it may be that I have this to force me to learn the lesson of being a taker...I'm a horrible taker.
So I had back to PM on 9 September for the final round of lumbar blocks...and then referral to Dartmouth Hitchcock Medical Center in New Hampshire...
I continue to suffer the set backs of this horrible disease that was proven to me that the Medical Community needs to learn more about....I'm printing flyer's to take with me next time.
My heart goes out to you Suzie. xx
ReplyDeletePrinting flyers is a great idea for when you're in hospital. I did that when I had to have a hysterectomy last year. I printed an explanation of what RSD is, how it affects me, any special factors that relate to my care (such as no blood pressure cuff on my right arm) and why I take my medications. I got my Pain Dr to put it in with my chart so all the staff that were to look after me could read it and get a better idea of what was wrong. It also meant I didn't have to explain my situation every time there was a nurse shift change.
If you like I can email you my flyer so you can see what I mean, and adjust it for your situation. It really helps the nurses etc understand what's happening so they don't make stupid mistakes with your treatment.
I'm sorry it didn't go well today. I'm in a similar situation so I know where you're at. Ironically, I've had that same song going around MY head all week! The bad days where we have to rely on our kids and husbands, just plain suck.
But we still have to have hope that it won't always be like that. That we'll get a break finally and things will be easier. I hope your break comes soon and you start having some good days.
x Kate