My new lease...

If I put myself into a cocoon will I come out a beautiful butterfly and flutter on the warm breeze in the sun?

My new lease may have had a loophole…we’re renegotiating.

Sometimes when you feel better right off the bat… it catches up with you and your body says…. “Oh no you don’t. You’re not quite as ready as you think you are!” Why don’t I ever learn?

My neck incision seems to be a bit inflamed so it’s time to go back to Merry Land for a CT scan to see how it’s doing on the inside. My fear is that the fusion is not taking. I have a sensation of movement beneath the incision but it might just be scar tissue. This fusion may be taking longer than we originally thought but I have confidence that it will fuse properly.

Having the surgery was still the right thing for me to do but it’s tough changing your lifestyle. The simplest things are different now.

Instead of pulling Grace back on her swing now I have to remember to just push gently. Then I remember that I’m lucky to be able to be outside with her.

Instead of bending over to pick up something up off the floor I have to think about how to best do it. Heaven forbid it’s over ten pounds or I have to just leave it there. That’s difficult for me because when I want something done I want to do it now. However, I am learning patience (and of course I’m learning it the hard way.)

The outpouring of kindness and support from friends and family is overwhelming.  We appreciate it more than you know.

Thanks for caring, LA

PS – Please pray for our military, those affected by the crises in Japan, Libya, and around the world.

I have a new lease on life

Have I told you that I feel like I have a new lease on life? Well I do, especially before about 3 PM when I’m out of the house.  My energy level is not up to where it used to be but I’m trying to be positive and hoping it will return soon. And, I’m off all the meds except for one that has no mind-altering side effects. Oh, I’ll just tell you. It makes my bladder work. Yup, I said it. If I said one tenth of what I was really thinking in this blog it might be slightly interesting/entertaining. But in the interest of being politically correct and polite I’ll try to tone it down a little even though I’m feeling more like a late night HBO monologue.

Right now I’m honestly thinking, “I’m almost 44, I have a 5 1/2 year old little girl that runs circles around me, I have a Zipper head, I haven’t had an adult beverage in 80 days, Japan is a pitiful mess and dealing with nuclear fall out, we are at war with Libya, and the Cleveland Park Train crashed and a child was killed and people were hurt. AND I can’t drive.”  That’s it… It’s the end of the world as I knew it. “And Lord please be with all those people that need your love and support!”

Now all that said: Thank you, thank you, thank you to everyone that has helped me/us get through this. We could not have gotten this far without your help! First Pres. WPC Moms and staff have totally kept Grace in a very happy place - thank you for all the play dates! Friends from all around have kept David and me happy with dinners and treats. This is where I start crying again because I am so lucky and blessed.

Chiari, Tethered Cord, and Ehlers-Danlos Syndrome are not pleasant and I am incredibly fortunate to have had the surgery that I did by the neurosurgeon that I did. And, I have a fabulous Chiari support family many of whom are from Spartanburg and I didn’t know before I was diagnosed. They help me understand what is physically happening in my body and why I may have a particular feeling or pain or why I may need this or that. For instance: I have the pill that helps my bladder work because of the Tethered cord and the fact that I had a Foley catheter in for a week. Thanks Lee for helping me out with that J

I’ve starting having an external burning pain on my left, front, lower ribs, which I’m told by my new Chiari sister Katy, is my ribs/nerves. That will go on the list of questions for my follow up with Dr. H the end of April. Hopefully I won’t have to take medication for this. I hate taking medicine mostly because my grandmother to whom I referred earlier was all about holistic healing. I know holistic healing doesn’t always work and that your body may need medicine and surgery every now and then but who really knows what the cost/benefit of taking a drug really is? I can tolerate a little sunburn type sting on my ribs without medicine but if it gets to the point of inferno and I can’t wear clothes then that’s going to be an issue.

The muscle spasms surprise me occasionally but are nothing like they used to be. The incisions seem to be healing nicely but my neck incision stays irritated from the brace. What should I call this thing, a brace, a collar, a nuisance or a protector, and giver of relief? I have a real love/hate relationship with this thing.

It’s funny because when I’m out of the house people stare at me and while I walk by them of course I say, “Hello” but I think they are thinking, ‘Hey look at that girl with the neck brace on … she must have been in a wreck… lawsuit.”  And then I think, “My nails look really nice and I’m feeling good today. Brain surgery”

Last week I spoke with the nurse at my neurosurgeons office and was given the “go ahead” to take off my neck brace for 3 hours at a time. However, I must still sleep in it, wear it in the car, and wear it during light exercise like walking. Driving is another issue. UGH! WHEN CAN I DRIVE? And, how long will I be in this thing? The purpose is for the rib graft to fuse to the vertebrae which may take a little while.

If you would like to know more about Arnold Chiari Malformation, Tethered Cord, Ehlers-Danlos Syndrome (EDS) and related issues please visit www.csfinfo.org

Thanks for reading and God Bless you and our great country! Leigh Anne

Pictures

Daily outing to Emma Key's

The bandages: neck, shoulder, sacrum

neck incision: suboccipital craniectomy w/ fusion to C2

Really bugging me

This weekend has been amazingly beautiful and the daffodils are up everywhere. Have any of you ever cut daffodils and put them in a vase of water colored with red food coloring and over a day or two the flower starts to turn red? I did that yesterday and David and Grace thought that was the coolest thing they had ever seen. David had never seen that before and over the weekend I found more people that had never heard of doing that. Hasn’t the whole world seen that science trick before?

Well, I guess the whole world does know what’s going on in Japan. All the people that need medical assistance, a soft dry place to sleep, clean drinking water, and food. God please look after these people affected by the earthquake and tsunami.

In the meantime, here I am in my cozy bed typing away thinking about what I really want to say and what I really should say. I’ll go for the latter.  My wounds are healing nicely and itching like crazy which is a good sign. My hair is growing back in at the base of my skull and that is making me rub my head against my brace like a cat rubbing up against the corner of a chair.

The meds. Today I just took Tylenol because of soreness but I do not have a headache, I feel my feet, my back doesn’t really hurt and I feel good. But tonight I had to go back to the heavies and take a Demerol. For some reason my ribs want to give me trouble at night. At about 9 PM I think it’s ribs #7 and #8 say, “ Okay, we are off duty, time for a shift change…”  literally. This is new and really bugging me. It’s just not fun when something irritates you.

It’s about now that I really want to unload and then I think about the victims of the earthquakes, I think about how families are sitting at the bedside of a loved one waiting for him to wake up from a coma, I think about friends who have recently lost a family member, and then I think about how all these people are feeling: sad, hopeful, lost, lonely, thirsty, hungry, hurting, desperate. Thank you Lord for the blessings you have bestowed upon us and please be with all that need your comfort and healing.

Time for me to get over my ribs bugging me! 7 and 8 and I are hopefully going to sleep.


If you would like to learn more about Chiari Malformation, Tethered Cord, Ehlers-Danlos Syndrome please visit  www.csfinfo.org 


Thanks for reading. LA

Very Thankful

The outpouring of love and kindness is overwhelming. Thank you all for helping my family and me get through this crazy event. As I’ve been saying, “We are so blessed in every way!”

Yesterday, I went in for my annual ob-gyn exam. Of course was scheduled about 6 months before my surgeries were scheduled. David dropped me off, took Grace to school, and came back to the doctor’s office to get me. The nurse brought Dave back to the exam room and Dr. Cousins and I were talking. She loves to give David a hard time but this time she looked at him and said in her Caribbean accent, ”Man, I was gonna tease you but I don’t have the heart to with Leigh lookin like dis.” Then she got very serious and explained to us how truly blessed we are that we were able to have Grace and that she is very appropriately named Grace. Then she laughed and said something like, “guess that answers the question of whether or not your gonna try for more babies!”  She knew we were not but it would be a medical nightmare for us to try after the Chiari, Tethered Cord, and EDS not to mention that I’m 43. The crazy thing was that Dr. Cousins was the one who kept telling me there was something going on with my having a low thyroid and low body temperature, and folic acid deficiency. She said, “ I never would have put this together – but now it all makes sense.”

I had a check up with another family doctor this past week and I told him about my reaction to the antibiotic vancomycin and my having “Red man Syndrome” (a reaction to the vanco) after it was injected. He thought that was really interesting because he’s never actually seen it happen. Of course, if a medical professional doesn’t know you have a form of EDS you may very well become an enigma. Very luckily, Dr. H my neurosurgeon is not caught off guard with these weird reactions as he has lots of patients with different types of EDS.

David and I left the office again feeling very very blessed. Although this has been a difficult time for us we have tried to keep a positive attitude about all my “new” medical issues. We just push through it. But each time I see a doctor whether it is my family doctor, gynecologist, or friend in the medical profession they all remind me of how serious these conditions are and how lucky I am. Maybe it’s just easier to keep my head in the sand and go with the fact that I’ll never be a down hill skier.

I’ve decided today is the day. No more pain meds for me unless it’s Tylenol or Advil. (I will keep the muscle relaxer as needed for unexpected muscle spasms.) Over the past week I’ve been cutting back on them each day so I think I can do this.

Have a great day everybody and enjoy this beautiful day anyway you can!

This is really going to happen...

It is amazing how David has just jumped right in to keep us on schedule to leave on Monday (2-14). He got Grace off to school and she was so excited because they were having the class valentine’s party and she had a playdate after school. I’m trying to choke back  the tears and Grace can’t get into the car fast enough to leave. That gave me comfort and joy knowing that she was happy.

David and I hit the road and eventually go thru DC and get checked into our hotel. Sigh, the fun begins. I look at the clock and realize that I have two hours left until my “cut off” for surgery. My appetite was not very big so I went down to the lobby and ordered a ginormous decaf Margaret Misto and headed back up stairs to eat my granola bar.

I slept well. We got to the hospital on time, registered and the ball was rolling. It’s party time now. “Strip your clothes off, put them in this bag, gown open in the back, here’s the cup, there’s the bathroom, you know what to do.” The nurses and everyone were super sweet. They called David back and we were just hanging out taking with the nurse and waiting for the next flurry of activity. I scratched my head and I scratched it again. Then I think, ”I’m not a head scratcher.” I ask David if his head is itching and of course it’s not. Then I feel the first bump, I tell the nurse, and guess what…this is the next flurry of activity. “Check her chest,” the nurse says. My chest is beat red, as is my face and body. By this time I’m throwing up and my head literally feels like it’s exploding.

The nurse has stopped the drug and trying to comfort me. Dr. H has gotten there at this point and is telling the staff what to do and talking to David and me at the same time. I was in so much pain I couldn’t talk, cry, scream, or open my eyes. I was communicating with David by pinching and squeezing as hard as I could. After I finished throwing up in the bed pan I composed myself and smiled at Dr. H and asked how he’d been since I saw him last. He chuckled and looked at David and said, ”There’s our girl” He continued explaining that Ehlers-Danlos patients are often very sensitive to drugs that other patients are not. I turned over, flashed my back side, and he used a magic marker on my sacral spine area and an area next to it to mark the spot for the lumbar puncture. He said is there anything else you would like before we head into the OR? I asked him if he would say a prayer and he did and it was beautiful! I was confident that The Lord would keep me safe and guide Dr. H, too.

I kissed David and said I love you and the next thing I remember was smiling at him and holding his hand and David saying, “You did GREAT!”

God IS Good!!!

The outpouring of kindness, generosity, and love is overwhelming. Thank you all for everything – every thought, prayer, message, and your support. I could not begin to make it through this without you all.