Sunday, April 29, 2012

Just another update

Well it looks like I will have to have a shunt. The diamox is working in full force with all its lovely side affects. We are going to call tomorrow to let Dr. Henderson know and see if he will even do the surgery. I'm not sure I'm for it if he wont do it. I guess it will depend. I have lost every ounce of trust I have in Doctors except maybe three. I am hoping for the end of June so that I can enjoy summer some and have time to recover before I start college in August.
I am swollen beyond belief that I'm down to about one pair of shoes that fit comfortably. :-( I want to be back in my normal body that I had three years ago....
I also have a rib out of place on the left side and possibly one on the right. No orthopedic will see me within distance. They either all say they don't do ribs or they don't handle EDS patients. I have a feeling this will only be the beginning of that when trying to find doctors. I'm so complex. Anyway, I went to massage therapy to help relax the muscles around it to see if I could get it back in place, but I couldn't. We are going to try to make an appointment with Physical Therapy this week as well.
We went shopping today for prom shoes and a graduation dress. When I tried on the dress is when I think my right rib came out of place. Any little activity will do it. I barely made it through that whole process. I did get a horrible headache and what medicine I normally take did not work for the first time ever. I did manage to finish. I just hope I don't pay for it tomorrow. I kind of got use to being able to do what I want and having a good stamina the month that I felt wonderful. I almost forgot how tough it was! Trust me I did seem to remember quickly though.
I know that my memory is not as good as it was too and I'm tired all the time again. Its so hard to be like this again. It makes me sad as I know the rest of my family. I am back down to one small activity a day. After that activity, if I even do it, I just lay in bed. Not what I expected my senior year to be like or even my sophomore or junior year. Never take life for granted even the small things.
The end of the year is quickly approaching. Lots going on...... Prom, Graduation, graduation parties, sisters confirmation and party, both sisters dance recitals, and a rush to finish assignments. I hope I make it through all of it.
I am hoping to make it to preschool at least one day this week for some fun.
Thank you for all the prayers and support. It means so much. :)

Tuesday, April 24, 2012

Sick again?

The headache, nausea, and weakness have put me in bed for three days now. I was/am very sick. I have not felt this bad since my low pressure headache back in February. Well this time Dr. Henderson believes it is a high pressure headache. If you remember back when I had the tethered cord surgery, they did a lumbar puncture and my pressure was 41. The high end of normal pressure is 15 so I am very far from that. I was not having symptoms at the time. Unfortunately, the symptoms have come on me very rapidly. I was fine for weeks and was feeling better than ever. Although I am very grateful of those days, it does feel like such a tease. Dr. Henderson did start me back on Diamox for the pressure. This medicine is HORRID to take. It has horrible side affects that can sometimes seem worse than the original problem. If this medicine works and helps my symptoms, then we know it is definitely high pressure and I have to consider a shunt. :( I really don't even like talking about the dreaded "S" word. They are easily infected and may need lots of revisions. I have always know this was a possibility. I was originally diagnosed with this way back three years ago at Baptist Hospital, then at the Mayo Clinic they said I was misdiagnosed and did not have inter cranial hypertension. I am going to take the diamox and see what happens. This medicine works very quickly and I should now within a few days. Please pray that I will know what the right decision is to do about the shunt. Thank you!

On another note I am going to my Senior Prom. I figured that since I missed out on everything else my whole high school career that I better go and have fun at least one night. There are 32 days of school left. Filling out graduation announcements and invitations makes graduation seem so real. It has flown by, even not being there. Please also pray that I feel great for both of these days. They are both huge steps from where I started. :)

Sunday, April 15, 2012

Just an Update

Not much to update on. I have been feeling GREAT! Spring Break was last week. We went to Florida. It was the first vacation that I was  able to do everything....NO NAP and NO PAIN MEDICINE! It was a great feeling. Now I'm ready to GRADUATE and for SUMMER!!!!!! Only 8 more weeks left. :))
I leave for Maryland again on Tuesday. I have a urologist appointment to check out my kidney stones as well as a 6 week follow up with Dr. Henderson. I don't even feel like I had surgery. I have no pain at all from it. I am having an issue with my rib that he did the rib graph on from my fusion surgery. Hopefully its nothing and all will go well and no surprise hospital stays this time. :)
 The little white dot in my kidney is one of the stones.
...and here is a picture of the hardware from my fusion surgery. 

I will update again when I get back. Have a great week.