Monday, October 4

I am still here.

It has been a bit of a roller coaster ride the last few days. We had thrilling highs, the scary lows, the waiting, the bumpy parts, but--just in the last few hours--I am feeling like this particular ride is coming to a calm end. I will just enjoy the peaceful reprieve until the next ride starts up again.

Basically, the day after they pulled out the pain pump I felt like I was having to beg for pain relief. On the one hand, I understood that they didn't want to give me too many IV meds if I needed to go home the next day, on the other hand--I was in pain and needed help! On the first day, the pain doctor wanted to treat me with neurontin--a medicine that treats nerve pain. However, on the first day following surgery while--yes--I was having nerve pain, I was also suffering major traumatic pain simply from having bone, muscle, and tissue cut and rearranged on my body! That pain could have been helped by some morphine--which the nurses didn't seem to think would help. When I really begged and pleaded for some good old narcotics, then they would reluctantly give me a little bit. Hutson later told them that they should have treated me with morphine--but that was only after I wasn't needing it as badly anymore.

The minute you have a limb amputated, you start to feel that everyone thinks that your pain is in your head. They have heard of phantom pain but don't really understand what it is or where it comes from. So when I am saying that my foot is burning (when there isn't a foot there anymore), you can tell that this person is thinking that you are imagining the pain that your foot is having way off in a dumpster somewhere. I could right away see why so many of the amputees I have spoken with prefer to talk about it as nerve pain rather than phantom pain.

Anyway, the physical therapy people forgot to come for me on Thursday, so they decided to let me stay until Saturday morning so I could have two sessions of PT before going home. It was fun to try and use my one-legged body for the first time. It was so weird to be able to feel my missing foot touch the floor when I stood straight up. You really have to spend a lot of time looking at your legs or else you get confused on what your brain is telling you. On the first day, we tried out moving with a walker.

But on Saturday, we were able to speed things up a little with crutches. That was nice.

They also gave me exercises to do three times a day to keep my leg strengthened. It is so strange to see this part of yourself moving around--but that it feels like a complete stranger. When I sit on a chair and go to set my leg up on another chair, I constantly find myself needing to pull it closer. I will see my leg coming down through the air to come to rest on the chair but it will completely miss it and end up on the floor. It is like getting a new car and needing to figure out how far you can pull into the garage without hitting the wall. I just don't know my angles yet.

We worked so hard on Saturday to get discharged, but everything was moving so slowly--and I don't just mean the help. Yes, PT didn't show up until noon, and the doctor's residents didn't come until even later. But my bowels decided that they were going to be a little late in moving, too. Before you can get discharged, they always ask for a few things: signed papers, required prescriptions, collection of personal belonging, and--oh, yea--proof that all systems are go in the bathroom. Good grief--Doug and I always knew that we knew each other well, but after one suppository, two laxatives, and TWO tries at an enema--we now can say that we know each other very deeply. When we finally had success, we were out the door and in the car before anyone could say, "Pee-U!"

The hard part has been this overall feeling that no one is really overseeing your care. Yes, there were wonderful people at Jackson, but there was no sense that they were working together as a team. Yes--Hutson may have told them to give me morphine, but if the pain management people didn't think that worked in their timeline, they did something different. The PT people didn't know if they should do exercises with or without my brace because no one had written up the order--and there didn't seem to be a way to call anyone either. So, you got this, "Well, we think this is what he would have wanted us to do . . ." kind of attitude that starts to get stressful after a while.

We have just come off of a year and a half of working so hard for things to go right--and seeing almost every step of the process go wrong. So when I finally come to the point that I am amputating my only right foot so that I can move on with my life--I NEED THIS TO GO RIGHT. I don't want to have every little person in the piece of the puzzle treat me with this attitude of, "Well, I think this is right . . ." I want people to be absolutely confident of what they are doing.

So, for example, I came home with these feelings of phantom pain so I started googling. Well, one thing led to another and I am finding that most people these days go home with a cast on their amputated limb because it has been shown to reduce swelling, increase recovery time, and help manage phantom pain. Well, here I am in a leg wrapped in gauze and an ace bandage! Why aren't I in a cast? So my mind starts to jump ahead--"Does Hutson know what he is doing? Does he do it the 'old school' way and doesn't know about this research with the cast?"

And what about these drugs I am taking for phantom pain? Why am I taking them? Aren't there different therapies I can be doing to help with this pain? Why hasn't anyone referred me to them? Am I just supposed to figure all this out by myself?

Who is in charge here? I need this to go RIGHT!

So, yea--this was all coming to a head around 2am last night, right as Doug was trying to get his lesson plans finalized because he had been in the hospital with me all week. Poor guy.

So--he was sweet as ever. Agreed that our stay in the hospital was not an experience that would build confidence in the care we were receiving. That, yes, we have been through a lot so to just tell us to go home and not worry wasn't really helpful. We like information.

Doug said that I have researched and talked with people and googled my fingers off--just to get us to the point of feeling good about amputation. I think that if we had hoped that I was just going to get to relax now that the deed has been done--I am wrong. I need to gear up for a whole new round of researching, talking, and googling to make sure that I am getting the best care and services available from this point of the process forward. A bit discouraging but probably true.

I am a little sick of the line, "You have to be your own advocate." I understand that. But at some point, can someone just show up who will do a good job and exude a confidence that lets me know that I can trust what they are saying, know that they have my best interest at heart, and that they are giving me the best care possible?

Why do I always feel like people are backing out the door before they even come in--and say just enough to have technically answered your question but not really have said anything new? Is it really that miserable to stay in a room and talk with me? Maybe I need to wear more deodorant.

So, this morning I woke up and started making phone calls. I called amputees I hadn't met before. I called recent amputees who are about a year ahead of me. I called a prosthetist. I called Dr. Hutson's office. Etc. etc. etc.

My amputee friends were very kind--all letting me know that they had been through this, too. Lots of ups and downs--I get it. A nurse from the insurance company called and--after listening to me--asked if I would benefit from joining an amputee support group. But then my Mom, Annika, and Elise came in the house and brought some life into the house. My Mom sat with me as a cried a little and then I felt better. Elise took me out on a walk with the dog in my wheelchair. Later on, the phone rang and it was Dr. Hutson. He explained why he had chosen to do the gauze wrap as opposed to the cast--made good sense. He was encouraged by my decreased level in pain. He was looking forward to my appointment with him on Thursday where he could take a look at my stitches. Yes--I will show you how to wrap the leg then. No--there is no need to see a prosthetist or PT yet--we will get to that in good time. Your job now is to recuperate and keep your leg elevated.

Recuperate and keep my leg elevated.

Recuperate and keep my leg elevated.

OK . . .

So for now, I am going to try really hard to stay away from Google, try to get outside a little so the walls don't start coming in on me, recuperate, and keep my leg elevated.

Doug went back to school today and was overwhelmed by the amount of people sending love and prayers our way. Made him feel really good.

I guess I made it through my first roller coaster ride--I'm sure it won't be the last. But happy to be safe on the other side nonetheless.

Love to all of you who helped our family this week by watching our kids, driving around from place to place, making meals, sending cards, praying in earnest, and sending love our way.

Love back at you--

Anne

P.S. When Dr. Hutson came to my hospital room to take out the drain from the wound site, I took pictures of what my leg now looks like without the bandages on. If you would like to see, go to the upper right corner and click on "Anne's Great Fall Wound Pics." Don't worry--its more interesting than gross if you ask me. :)