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.
Living with chronic illness - Mast Cell Activation Syndrome - Chemical Sensitivity - Chronic Intractable Migraine - Ehlers Danlos Syndrome - Dysautonomia - Chiari Malformation - Cranio-cervical Instability - Functional cranial settling - Cranio-Cervical Fusions - Retroflexed Odontoid - Occult Tethered Cord
Sunday, July 20, 2008
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.
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
Pain
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.
So, I've settled down quite a bit now and the pain has dulled. I guess recovery goes this way sometimes.
Bored
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.
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.
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
Recovering!
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.
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 book...in 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...
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 book...in 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...
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