Monday, July 28, 2008

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!

Saturday, July 26, 2008

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.

Tuesday, July 22, 2008

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

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

Monday, July 21, 2008


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.

Sunday, July 20, 2008

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.

More pain

Last night was awful. Every cell in my body hurt. It hurt to move. It hurt for anything to touch my skin. I couldn't do anything but lay in bed and moan. I don't know if I over-exerted myself during the day, or if it was just one of those times that I don't have a good explanation for. It's the same feeling you get when you're real sick with a high fever and you hurt all over, but it's worse than any fever I've ever felt.

I'll have to make sure to get enough rest today, which is difficult when your pain medicine acts like caffeine. I feel like I've had a red bull every time I take my medicine, so it's hard to force myself to rest. But I'll do it anyway.

Friday, July 18, 2008


My pain really caught up with me this afternoon. I don't know how it got away from me. The pressure in my head felt very high. The pain throughout my entire spine was horrible. So, luckily, I was able to eat and take my pain medicine. I think the blood drawn this morning contributed to my sick feeling. So I've been drinking lots of water. I've been over-heating quite a bit, too.

So, I've settled down quite a bit now and the pain has dulled. I guess recovery goes this way sometimes.


I've been doing okay. Not too much is different. Gus is still out of town. :( That keeps my life fairly boring. But the puppy helps to keep things interesting. She's doing great. She's such a puppy, running around and chewing on things. She's a real sweetheart. But the other dog's are still not getting along with her or accepting her.

Physical therapy has become a bit more physical. Yesterday, it wore me out so much that I slept the rest of the day.

The visit with the endocrinologist was miserable. He doesn't believe my level of bone density is low enough to be treated. That would be okay with me, if he can convince Dr. B that it doesn't need to be treated. Otherwise, I suppose Dr. B will convince him to treat me anyways. Basically, based on my numbers, I am on the lower side of normal for my age. So it doesn't seem like it would need to be treated. That would be one less medication for me. So I wouldn't mind. However, I suppose Dr. B is not likely to change his mind. He knows what he wants.

I'm looking forward to my first massage therapy session on Monday. That should be very helpful.

Wednesday, July 16, 2008

Life has been going okay. My sweetie, Gustavo (Gus), is out of town. He's visiting family in Mexico. So that makes things a little boring and lonely for me.

Physical therapy is going pretty well. We do stretches, electro-stimulation, and some very gentle exercises laying down.

I've developed an intense muscle spasm to the left of my lumbar spine. Luckily, my dad is quite adept at massage, so he's been able to help me keep it at bay. It's causing me all kinds of pain, and it contributes to my difficulty sitting.

I still am not able to sit in one place for long. We saw a movie on Monday night, and I had to be walking around and stretching for the whole second half of the movie. But that won't stop me from going back today. Luckily, our local cheap theater has had some pretty good movies showing..."What Happens in Vegas", "Forgetting Sarah Marshall", and today "Baby Mama". So that's good at keeping me busy.

I'm still pretty busy with the puppy, too. She is a real sweetheart. My malteses have yet to accept her, so there is some extra tension in the house. But she's quite attached to me, and I have to say: I'm becoming quite attached to her, too.

Friday, July 11, 2008


Hi everyone.

I'm back to posting on my blog, for the reason I mentioned earlier...I don't want to bother people who don't want an update about every single step of my recovery.

On Monday, I got my stitches taken out. What a relief! I barely felt it, with the exception of the drain stitch, which was very deep and sensitive. So the skin is definitely less irritated each day.

I started physical therapy on Thursday. I think it will be great. I'm seeing Dr. Jamie Bartolli. She's very understanding about my back, and I'm sure she'll be very helpful with my recovery. She doesn't quite understand my POTS yet. She asked how I know I'm not just out of shape. So, hopefully, she'll read up on that and have a better understanding of my ridiculous heart rate and need for salt pills as we go.

My dad bought a puppy over the weekend. It was unexpected, and has added quite a bit of work to my day, but she is a sweet little girl. She's a shih-tzu...lived in a pet store cage for 6 months. So she's gradually blossoming each day. She would love to play with our other dogs, but they are not so happy about her arrival. She's not house-trained yet, either, so she's a lot of work. But she's very loving. I wanted to name her Winnie, but it seems that her name is Snuggles. (I liked my name, better.)

That's where I'm at. Thank you again for all of the support.

Saturday, July 5, 2008

Pictures, all mixed up...not in the perfect order

I apologize that these pictures are all out of order. Blogger does not make it easy to change the order of anything. I'll be lucky if the captions match the pictures. But at least I was able to load them all on here, finally!

Resting at Christmas...reasons why I need surgery

First steps after surgery

Gus, Aunt Corinne, and Uncle Greg, all in my hospital room in New York

A visit from Aunt Corinne and Uncle Greg (quite a ways to travel to visit me in the hospital for a few days). I'm so lucky to have such a supportive family.

A Havanese puppy we visited at the pet store the night before surgery.

A delicious last meal, combined with some retail therapy!!!

Me and Danielle, my Australian tethered cord friend

A visit from some chiari friends in the hospital room

Taking a nap after surgery

Me and Dad in the recovery room.

Me and my Mom in the recovery room after surgery

My rash from the antibiotic (no more penicillin family drugs for me)

Me and Gustavo after surgery (with my red nose from the allergic reaction)

Me and my little brother, Rob, after surgery

On our way to the mall...a good distraction before traction.

Me with my dog visitor, Petey

My Australian friend, Danielle, with her Dad

Hanging out with Gus the night before surgery.

Finishing my the waiting room before surgery. So great to have a distraction.

My beautiful incision...a bit irritated and itchy

In the hotel room after surgery

No-Rinse Shampoo Cap

Me with Petey, the therapy dog :)

Dad, Me, and older brother, Chris

A last look at my back intact...