DYSAUTONOMIA and MY DAUGHTER

I'm sorry I haven't posted in the last few days. I had promised to start a new series this week that described my entire life with Dysautonomia, basically from the cradle until now. Unfortunately, I have not been able to get that completely finished and ready to post yet. I have not felt well at all this week, mostly due to excruciating back pain I've been experiencing. I've had an especially hard time just getting out of bed and getting to the bathroom. It hurts just to move. I have started taking some medication for it but it doesn't seem to be helping. If it is not better by Monday, I will go see my doctor. I have a history of degenerative disk disease and a couple of herniated disks. I know what to do for that but this doesn't seem to be the same thing, or at least not in the same location. Regardless, I have decided to give it a little more time and then I will go in and see what is up. *sigh*

In addition to that, yesterday morning my husband took our youngest daughter, Rebekah, to The Sibley Heart Center in Atlanta for testing to confirm whether or not she has the same disease that I have. She has been having many of the same symptoms that I have for quite some time now. She had already completed lots of testing including an EKG, an ECHO, a 30 Day Event Monitor, a TON of blood work, etc. Then yesterday they did the Tilt Table Test......

With all the results in hand, the Cardiologist and an Electrophysiologist at Sibley confirmed what we had suspected. They said based on her family history, her symptoms that have lasted for so long and the results of all her tests, they are confident she DOES indeed have Dysautonomia. She will go back for a follow-up with her cardiologist in about 6 weeks.

This truly breaks my heart for her. I had prayed they would find the cause for her symptoms but I was really hoping and praying this would not be the outcome. I hate so badly to see her have to go through any of the things I've endured over the last 2 years. I would not wish it on my worst enemy. I guess if there is anything positive about this whole thing it is that we know a lot about it and what to expect. Bekah is really a head strong girl and does not intend to let this stand in her way. Thankfully, she has never passed out, though she has had to sit down very quickly to keep from doing so. She has been able to maintain a fairly normal schedule and function on a somewhat normal basis. I'm really praying that she will be able to continue on with a normal life as much as possible. Her biggest obstacle right now is the major fatigue she battles almost daily. It really hinders a lot of the things she wants and needs to do. She is having a little trouble balancing school, marching band season and the rest of her everyday life because everything makes her so tired. She comes home and really just wants to go straight to bed, but she still has a mountain of homework left to do. She is carrying a pretty full load of advanced and gifted classes and it has proven to be a fairly tough semester so far. She is doing very well grade wise but her body is trying to reject it left and right.

I would really appreciate it if you would keep Bekah in your thoughts and prayers as we continue down this road with her. I hope and pray with all my heart that she will improve as she continues to grow and mature into an adult. Typically, young girls who have this disease during adolescence AND develop full-blown symptoms, often continue to have symptoms into their late teens and early 20s but then will often improve dramatically and go into remission. I am really praying that Bekah will be one of those girls! I do NOT want to see her continue to suffer with the things like I have. I want her to feel better really soon and to go on to college and enjoy those years. I don't want her to be tied down with this and limited in what she can do. It breaks my heart to think about it. I would truly covet your prayers where this is concerned.

Well, I intended for this to be a quick post to update you on what is going on but as usual, I blabbered on and on. I will try to wrap it up now. I just want to leave you with a couple of prayer requests. In addition to Bekah's illness, please pray for my cousin and my very close friend, Anita, and her husband, Ramon. Ramon has brain cancer. He has had it for a few months now and they have just recently placed him in the care of hospice. A couple of days ago, they had to move him from their home into a skilled facility so they could better manage his pain. He is definitely not doing well and it is only a matter of time. As you can imagine, this has been a very difficult time for Anita. Not only is she dealing with her husband's terminal illness but last week was the one year anniversary of her mom's sudden, unexpected death. She has been through so much this past year and it hurts my heart so much to see her have to experience the death of someone else that means so much to her. Please keep her, Ramon and their families close in your prayers if you will.

Thank you so much for continuing to visit my blog. I know I'm certainly not the best writer and I don't have the world's greatest blog, but I sure do enjoy all your visits and the sweet comments that you all have to offer. You bring a lot of much needed joy to my life and smiles to my face each time I read your comments. Thank you for coming back again and again. I truly appreciate it. I hope you all have a wonderfully blessed weekend! See ya soon!

UPDATE: Anita's husband, Ramon, passed away about 1:oo a.m. Saturday, September 5th. Please keep our family and Ramon's family in your prayers.