5 replies to this topic

[coffeecups]

I have been here for quite awhile. But I haven't posted much or even filled out the about me section. I have read a ton and it has been so encouraging. I no longer felt alone.

Here what I wrote in the about me section. It's long...


January 2010 I was 24 weeks pregnant with our third child. I contracted spinal meningitis. At the hospital the Drs told my family I probably would not make it. Two days later I had a spinal stroke. The damage was at C2. I was now a incomplete quad. I was placed on a vent and everything else. Also, the infections were not getting better

Four weeks after the stroke, my placenta abrupted. They had to do an emergency C-section. Noah was born at 28 weeks, weighing just 2lb 7oz. He is now almost two and a little miracle. He is a loving, funny and active toddler. He doesn't show any effects from the meningitis or the prematurity.

I continued to fight infections for the next two and a half months. The Drs could not understand why. I don't really remember anything from my stay in the ICU. My family and friends were amazing. I was rarely alone. My mother took a leave of absence from her job and would stay with me at night. Often my father-in-law relieved her about 5am. My two best friends visited almost every day. Chris, my husband, was there during the day and went home withe kids at night. Huh

My primary care Dr started talking to my family about getting me into a spinal rehab center. So as soon as I was stable I was flown to Craig rehab. My husband came with me and the plan was for my mother to come up in a few days. But two days after I got to Craig I crashed. I was sent to Sweedish hospital. It turns out that my temporary shunt had stopped working. Pressure was building in my brain. They placed a permanent shunt.

These Drs were also confused by the constant infections. But one Dr had an idea. My hematologist contacted an immunologist that he knew. The immunologist diagnosed my immune deficiancy. I do not produce any antibodies. That is why I could not beat the infections. I now do weekly infusions of IGG. That is basically antibodies from many different people.

As soon as I was stable I went back to Craig. My mother stayed with me during the week and my husband often flew up on the weekends. Sometimes he brought my oldest two children to visit.

I came off the vent. I was able to use my arms. I even have function in my right hand and very limited in my left.

Three and a half months later, I came home. I am busy with three kiddos. I homeschool my oldest. I have been able to knit again. I love knitting. I also enjoy reading. I was very glad to find apparelyzed. Although I haven't posted much, I read a ton. I no longer felt alone.

[hannibal]

Welecome to the forum. Feel free to ask any questions.

[rue2you]

We share some things in common!

In spring of 2008, I was nursing my last baby girl who was about 8 or 9 months old and she bit me a little. It really didn't even hardly hurt. I washed it and was done with it. The next morning, I was sicker than I have ever been and I had a red streak from my breast and it went all the way up over my shoulder to my back. I thought I had mastitis and laid in bed for 3 days and could not get up!

I got over that and then started experiencing weird neuro symptoms. Shocks and tingles all through my body, muscle spasms, weakness in my legs and arms and it got worse. They thought that I had MS based on symptoms although my brain MRI's always came out fine. They suggested we have another baby to end this "relapse" they thought I was having. So, we did and instead I got worse.

When I was 5 months pregnant, in March of 2009, I felt awful and went to bed. My husband woke me up 24 hours later and I was unable to move or feel anything from my waist down. Long story short....I ended up in Cleveland Clinic for a week and they think that the infection from the breast stayed in my system and attacked my spinal cord. I have damage at C7 (which I had a car wreck in '95 they think put a weak spot there). My hands are weak (more like when they get REALLY cold and they move slow) in the mornings but kind of wake up throughout the day. My right breast and shoulder and upper arm are numb but I can move them fine.

I still don't have pain or temp sensation in my legs and they don't move a whole lot so I am classified as a T10 incomplete. I did gain a little hip and thigh movement back through therapy.

My little guy was born healthy and is a happy and busy 2 yr. old and I also homeschool!

Glad to have you hear and look forward to getting to know you better!

Edited by rue2you, 14 January 2012 - 04:54 PM.

[Edinburgh Colin]

Amazing story, what a lot to deal with and I'm sure pretty scary when you were swsre enough to realize what was happening.
Glad to welcome you here and hope we can provide help and support.
EC

[goose]

I'm so glad you decided to post. You have an unique story to share. You know I just love your nickname...good to the last drop.

It's good to know you don't have to feel alone or think you're the only one who has experienced the trials of SCI.

[isobar]

You've been through a lot of course you dont need me to tell you that, sounds like your family was very helpful it's good your son suffered no effects and is the way he is. You sound like you're doing very well. It's good the site has helped you along your journey.