Welcome to Anne's blog!

If you are new to the blog, you probably want to start at the beginning of the whole sad story. To get there, use the "Blog Archive" tool in the right column of the blog and click on "2009," and then "January 25." From there you can continue to click on each week to see the weekly entries.

I would love to hear from you! If you would like to leave a message, you can reach me at aheetderks@wcsmiami.org!

Friday, October 8, 2010

Howdy, friends! Dad and I went to see Dr. Hutson yesterday and EVERYTHING LOOKED GREAT! Thank goodness. He saw no sign of any kind of infection and said that he would be very surprised if we encountered any infection in the future. Love those words.

So, for the next week I have been assigned to continue to keep my leg in the knee immobilizer, do my regular leg exercises, take my medications, and keep my leg elevated as much as possible. Since the incision site is not completely healed yet, we don't want to stretch out that area with any kind of swelling (if you want to see it--click the Great Fall pics link). Therefore, he doesn't want me to ever stand with my leg hanging down for a period longer than 30 minutes. Ah shucks--that sounds like I won't be able to make any meals for my family in the kitchen. What a sacrifice.

I shouldn't joke that there would be any NEED for me to cook because so many people have been bringing us food!! What a precious precious thing it is to have good meals brought to your house. And then let's talk about the desserts! All of my silly students at school know that I love frosting so they have been sure to get plenty of frosting-covered whatevers (I don't care what they are because I just eat the frosting and then throw the rest away) to our house. I may just be 600 pounds by the time I am ready for my prosthetic.

While at the doctor's office, we discussed a few interesting things to think about. First, he stressed the importance that I NOT fall on my stump. I managed to take a shower for the first time in preparation for my appointment yesterday (the world rejoiced) but it felt a little like I was on the verge of disaster. I was fine getting in, but it got a little dicey when getting out. We may have to figure out how to install some shower grab bars or maybe remodel our bathroom a bit (oh joy). Second, we talked about driving. I have been driving with my left foot for some time now and can hardly imagine driving with my right anymore. Technically, it is not illegal for me to drive left-footed, but if some yo-yo crashed into me and our accident ended up going to court . . . I am sure someone would take issue with the fact that I wasn't driving with society's foot of preference. So, I need to figure out how to get some official "OK" to drive either with my left foot, or with some sort of modification to my car. Anyone know anything about this?

My X-ray looked awesome. How nice to see an X-ray up on the light board that doesn't have smashed bone, dead cartilage, massive screws, or gelatinous tissue. There was my pretty new stump with a perfect bone bridge put in between the tibia and fibula. Looked so nice.

When I get a prosthetic, the weight being put on the bridge will cause more bone to develop around the end (Wolff's Law of Bone Growth - the more pressure that is exerted on a bone, the larger and more dense it will become). Therefore, the end will become more rounded and strong. So cool.

Last night was a bit miserable because I was experiencing new kinds of nerve pain. It felt like I was stepping down on a bed of nails just to the point that the nails would start to pierce the skin (such a pretty mental picture). I was also itching to death. My leg felt like it had been bit by an angry mob of fire ants. Last but not least, I also got a bad charley horse-type pain so I hauled out the mirror and watched the image of my foot stretching out the charley horse. Amazingly enough--the pain went away! But then when I put the mirror away, the pain came back.
My friend suggested that I start wearing mirrored pants. Yes--I can just see how those are going to sell like hotcakes in the amputee community. Bathroom remodel here we come! :)

Needless to say, I spent most of the night listening to Doug snore and patting my leg from the outside of the bandage hoping that my leg would stop itching.

Do I sound like I am complaining? NO! All is well. It is such a relief to know that if I stay up all night fighting ants, walking on nails, and sewing a permanent mirror onto my knee immobilizer--I can still catch up on my sleep by sleeping all day. Which is exactly what I did today. Hard, hard sleep from 7am to 5:30pm. Guess my body needs it.

Our life has not been without its stresses this last week. We are all in a bit of a funk figuring out our new routines and responsibilities. I think it has been a little hard at times to adjust to the limitations of life with a "one-legged mom" (heard that once this week)--but we will sort all that out. We just need to be honest with our fears, quiet resentments, and hopes--and know that we just might be nearing the end of this particular journey (could it be, Lord?). Seems a little scary to hope for--but it would be nice for us to move forward to a life with full mobility.

Whatever--we will roll with it and know that (if I hear this one more time I will hurt someone) that we will be stronger and have built up a heck of a lot of character by the time we are done.

Again--can't tell you enough how much the cards, meals, flowers, rides, and the cans of frosting have helped us through the last week.

Finally--My brother and sister-in-law, Matt and Vera, found out late last week that Vera's Mom has liver cancer. Carolyn is the coolest Mom and it grieves me that their family is having to go through this scary time. It would be such a blessing if you could raise Carolyn and the rest of the Douma family to the Lord in prayer.

We love all of you so much!


Wednesday, October 6, 2010

After sleeping all day, celebrating my Mom's birthday, and going out for a ride in my wheelchair (with Doug pushing and Elise riding beside in her roller skates), I came home and was feeling some burning nerve pain. So I tried something that I had seen on a VA hospital website as a therapy for phantom nerve pain. It was kind of fun to try and seemed to help a little. Just thought I would share some pics . . .

Here is what my legs look like while lying in bed . .

Now I am putting a mirror between my good long leg and good short leg . . .

Ta-da! I now look like I have two good long legs! When the nerves in my short leg tell me that my foot is asleep, it seems to help if I watch the image of my missing foot moving around. I don't know if it is more of a distraction or an actual help--but I am going to keep messing around with it.

I'll let you know how my appointment goes tomorrow with Dr. Hutson.

Much love to you!


Tuesday, October 5, 2010

Well--it is very late but I just felt the need to share a few things.

1) I went all day without googling anything about amputation. Sometimes it is best not knowing.

2) I slept most of the day. In the morning, I dreamt that I was going around a very artsy village--breaking into cool shops and stealing all kinds of hand-made sweaters, jewelry, cards, etc. I was so excited and then I felt so guilty so I tried to return the items and things weren't going very well. I woke up just before I was about to get arrested. I have no idea what this dream means but I'm glad that I know that I am in no condition to go around shoplifting anytime soon.

3) I was thinking tonight that it would be so nice if my appointment with Dr. Hutson on Thursday afternoon could go well. Just then, I went to open two cards--one from my incredible Grandma (she has been sending me one card every day), and one from a dear older lady in our church who is affectionately known as Grandma Hyacinth.

Grandma's card said: "His eye is on the sparrow and He cares for you."

Grandma Hyacinth's card said: "I am with you and will watch over you."

Made me feel like God was sending me a clear message that He was keeping an eye on me. Forget about the flaws of our human medical institutions--I have the Great Physician watching over me.

Love to you all, my friends--


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--

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. :)