I've been having some good days and some bad days, as usual. Physical therapy on Saturday was difficult, because I had a few blackouts that morning. My heart rate and blood pressure were out of control. I could barely stay conscious when upright. I've scheduled the rest of my appointments for the afternoon, so I won't have to try to exercise in the morning (Yes, noon counts as morning, for me!).

Then, Sunday, I overdid it. I went to IKEA with Gus, his sister, and his nephew, and she bought us a beautiful kitchen table for our apartment. Unfortunately, I used up way too much energy. My body ached all night.

Today, despite getting a short sleep last night, my heart rate and blood pressure were a million times better at physical therapy. The difference between a noon appointment and a 3:00 appointment is like night and day (or morning and afternoon, as the case may be!). I'm a different person. Today, I did quite well in physical therapy. I felt like I got a good core workout...I don't have my 4-pack abs back yet, but I'll get there.

My parents' divorce was finalized today. The next two weeks will be spent moving (in two different directions, for me!). So, it's a very stressful time. It's quite emotionally and physically challenging. So, I'll do my best to get through.

Chiari Walk

I want to make sure everyone knows about the upcoming "Conquer Chiari: Walk Across America". The full information is available here.

On September 20, 2008, there will be 20 walks held across the country to raise money for chiari awareness and research. This is a very worthwhile cause. If you can help out it any way, it would mean so much to me. If you can participate or sponsor me, that would be great! I will be attempting the walk (with my wheelchair and a partner). It wouldn't be too bad, except that it's in the morning. And if you know me at all, you know that my body doesn't work in the morning. So it will probably be more exercise for whomever is pushing me. If you would be interested in sponsoring me, please follow this link. If you choose to do this, input my full name: Carolyn Richardson. Anything you can do would help. You are also welcome to participate in the walk. It's not too late to sign up. The walk that I'm participating in is taking place in Palatine, IL.

Thanks so much for your help. If nothing else, please spread the word for me about these walks. There are other locations across the country. This is going to be a huge day for chiarians everywhere. We've suffered without recognition or understanding for too long!

1 month post-op

I've been having an additional problem. I thought it was part of the oxy withdrawal, but it hasn't stopped. Every joint and muscle in my body aches. If I take some other pain med, it usually dulls the pain, but it makes me afraid of becoming dependent on pain medication. I also don't understand. My chief pain complaint should be my back, one month after surgery. And don't get me wrong: my back definitely hurts. But the overall body pain is more restrictive and worrisome. I don't know the cause.

Here's my scar right after I got the stitches removed on Monday, July 14th:





And here's my scar today, eight days later:

Anxieties

Well, I made it through the day pretty well. So I guess I don't need the strongest pain meds anymore, at least not on a daily basis.

My schedule is getting a little full...mostly just PT and planning for the moves, but I hope I'm not overbooking myself. The upcoming moves will be challenging for my body and mind. (My mom is moving out of the house and into a condo. My dad's staying in the house. Gus is moving a few towns away. I'm moving everywhere!) Such a big change is bound to be stressful. Plus, I'd really like to be able to move in with Gus pretty fully, but that is a big responsibility, since he won't be around real often to help take care of me. I'll have to take care of myself and start learning to take care of my living space at the same time. I'm trying to start planning my weekly meals and my shopping, so I can make dinner a few nights a week. I don't know how hard that will be if I'm teaching at the same time. I only have so much energy in a day. I just hope it's enough. I also need to figure out where in that tiny apartment we are going to store all of our stuff. We may need to buy an extra dresser just for the storage space, and keep it in the living room! I don't want to have just boxes everywhere. Something more permanent-feeling would be nice.

Well, I suppose regular anxieties affect us all. Everyone has to get adjusted to adult life at some point. I just hope my body doesn't let me down. I don't know if this surgery will have helped enough to make everything I have planned possible. If I'm no better than I was last year, I'm afraid it won't be enough. If I'm even a little better, maybe I'll be able to pull it off.

The other thing that's been worrying me is that several people have told me that even revising the fusion seems to fail pretty often. Dr. M sure made it seem like he knew just how to help me. I like the idea that there is something out there that can make me feel significantly better (other than marijuana...just kidding...I would never even try it!). I just want to feel better so desperately, and Dr. Milhorat has offered me that hope. I think my chances are better, since my first fusion has remained solid (my bone density isn't that low), and the traction helped so much.

I better go take my sleep meds, or I'll never get to sleep at this rate.

It seems that I was going through Oxy withdrawal over the weekend, as I lowered my dose. The body aches, sweats, and chills are all expected symptoms.

Luckily, I think most of that is behind me now, as I've switched fully over to some lower-strength pain meds. Hopefully, I'll be feeling a bit better. I do have a horrible headache today. That's no big surprise, as I have bad headaches at least a third of my days. It is sad to know that my headaches are still just as bad as ever.

I've got physical therapy and massage therapy this afternoon. I hope I'm up to it all.

Add in a low-grade fever, sweating, and stomach pain. I may actually be sick. But then again, it could just be me. Either one sounds viable.

My brother is having some health problems and is in the e.r. today. So hopefully, that won't be too serious.

I still miss Gus a lot...have to wait that out 'til Wednesday.

So, things aren't going great. I hope they get better soon.