3-4 WEEKS POST OP

The purpose of this blog was to communicate to friends and family while we were in New York. Now that I am at home, my friends and family are probably not checking the blog anymore, so from this point forward I am writing this primarily to inform those with ACM that are searching for answers. I will try to post periodically over the next few months to let fellow Chiarians what life is like AFTER surgery.

SLEEP: Surgery was September 11th. I got home September 20th. The first week after I got home the routine stayed the same as when I was in the hospital. I would take meds about every 3 hours. I would stay in bed as much as I could, then during the day get up and walk around a little. During the night I would wake up every 3 hours and take meds and go back to sleep.

My second week home I started having sleeping problems. I would wake up during the night and stay up. No, I am not sleeping all day long so that is not the issue. I don't sleep during the day so I can get some sleep at night. Believe me, if I could sleep at night AND during the day I would because I actually have an excuse right now! It may be the drugs...

Sleeping tips: My sister Deb made sure I had a hospital bed when I arrived home. This helps tremendously. My insurance will actually help fund this expense. In addition, my other sister Andrea, purchased one of those neck pillows for me. I DO NOT put it around my neck at night like one would think. I lay the pillow FLAT and place my incision in the part of the neck pillow that is open. I place a small portion of a standard pillow under each of my arms and shoulders. So, instead of lying on my side, which gets really boring, I can actually sleep on my back with pillows supporting my shoulders and this neck pillow supporting my head. The incision isn't touching the pillow or the bed.

NECK: I perform neck exercises to work the muscles. The doctor told me to do them every 30 miinutes. The first couple of weeks these excercises were not fun. Three weeks out, it is not difficult to do these exercises at all. The past two days I feel a lump inside the back if my neck that is tight. Regardless of how I stretch, I can't make that section feel better. I was told to do 90 days of PT starting October 23. (At first they said Oct. 5.)

ACTIVITIES: I watch tv and read. I try to do stuff around the house that requires no lifting or straining. Let say my label maker is getting a lot of use! I feel like I can do more, but I am listening to others past mistakes and trying to NOT mess this up. I have strained a couple of times and the back of my head will feel like it is on fire. I have only made a few trips out. My sister got married, so that required a long car ride (30 min) there and back. It was only a 3 hour event, but I could feel the impact for 24-48 hours after. I actually went to the movie this weekend. My sisters took me and I leaned against the wall with my pillows. It was nice getting out.

HAIR: So sad....All I can say is after you make it out of surgery alive, the hair seems so trivial and insignificant. Now, I am sure in a few weeks depression will settle in, but right now it is not a big deal to me.

DRUGS: For the past week or more, I rarely take any prescription pain meds during the day. There are exceptions and will continue to be exceptions for the next several weeks. I just lived with pain for so long BEFORE the surgery because I decided NOT to do prescription pain meds prior to surgery....however, when it gets bad I will take a pill. I have tried over the counter pain meds a couple of times. For three nights I have only taken pain meds right before I went to sleep, then slept throughout the night (mostly) and didn't take additional pain meds. However, typically I get up at least a couple of times during the night for medication.

FOOD: Most everything good in the world that I loved prior to surgery stinks....literally makes me sick to my stomach thinking about eating it: pizza, hamburgers, mac and cheese...all of the yummy food I loved in the past. I feel like I want to vomit most of the time. Now, I have only gotten sick twice in the hospital. But, the smells make me nauseous. I will try to figure out if this is due to meds our surgery. I was told before the surgery by the doctor that this would happen, but I didn't think it would last this long. When I do take pain meds, I always make sure I eat something. I also take meds to help with this, but I still have this problem.

Hope this helps....Kelly