** Due to the increasing severity of MY ILLNESS, it has become impossible for me to continue to post on a regular basis. Unfortunately, as much as I desperately long to, I am also unable to visit each of your blogs often or reciprocate all the loving, supportive comments many of you continue to leave - even though at times it may appear as though you've arrived at some long ago, forsaken blog! With that said, I really want you to know that I miss every single one of you and that I really am still here! I'm just too sick and too weak most days to be able to sit up long enough to create a brand new post...or even read one. However, I absolutely do receive AND read every new encouraging word you leave (and, often, the old ones, again and again!) and I cherish them now more than ever! I truly appreciate your love, support, and, most importantly, your precious time spent on your knees in prayer for my family and me. It ALL means the world to me and I am truly blessed to have friends like you!
~Hugs and Sister Love, Teresa

FYI: All comments come to my email, which I can easily read on my phone. I also enjoy Facebook on my phone because I can catch up on A LOT in a very short time there. Soooo, if you're on Facebook, come 'friend' me there! {{HUGS}} **

Saturday, September 5, 2009

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.

22 comments:

Rachel said...

I'm so sorry that your daughter has to deal with the same illness. That must be so hard to watch her have to go through it. I pray that through all of these trials God work all things for His good and His glory.

septembermom said...

I also am sorry to hear that your daughter has to live with this illness. I will definitely keep your sweet daughter in my prayers. I also will pray for your friends Anita and Ramon.

I'm sending you a virtual hug for whatever it's worth. Please know that your words and sincerity touch me very deeply. God bless you and your family always. You are a beautiful soul.

Julie M said...

T, I'm so sorry to hear that Bek has the same illness. I guess as you said at least you know all about it and what to expect. My prayers are with you and your family.

Yaya said...

Oh dear. My heart is broken for you as you are heartbroken for your daughter. :(

Marina said...

We will remember Bek in our prayers and trust that 'nothing is too hard for our God' ( Gen 18:14). May God grant your family grace to go through this hard time and surround you all with assurance and peace in Him. I'm sorry I don't know how else to support you except through prayer. Hugs to you and Bek

shraddha/april@theselfloveproject said...

My prayers are with you and Bek.

I stumbled it for you.Hopefully more and more people can be well informed of it since its not a commonly talked about disease.

shraddha

Tabitha@ichoosebliss.net said...

I'm so sorry your daughter received that news. I will be praying for you both.

Joan said...

I'm so sorry for the diagnosis. I pray she experiences remission. You are such an incredible inspiration every time you open up and let us in to what this challenge is like for you.

visit me ~ you've been splashed! (Just a little recognition for being a wonderful blogger!)

Thoughtfully blended hearts said...

Praying for you and your family members...it always comes in waves...but you will get through it!!!

Mom of Three said...

I'm so sorry to hear about your daughter's diagnosis. I am looking forward to reading your post on the disease.

Mommy Bear said...

I'm so sorry to hear about your daughter. She and the others you mentioned will definitely be in my thoughts and prayers. If she is as strong and brave as you, she will definitely get through this. I know God is watching over your family. Keep your chin up. *Hugs*

Ter said...

I'm sorry for all the horrible news going on in your family. :( ((hugs))

Amandasaurus said...

Oh my goodness. It's so tragic to hear of a young person already struggling with something like this. But she's clearly a fighter - just like her mom!

Ramblin Mama said...

I've just discovered your blog and read every post you've done, one right after the other. Your style is so open and very compelling. I have definitely added both you and your daughter to my prayers. I can't begin to imagine how devastating such a condition has been to your everyday life and I hope a miracle will appear quickly to allow you to again participate in family activities. I am signing on as a follower and look forward to your future posts. Hang in there!!

Casey said...

I wish I knew what to really say but I don't. All I can say is that I am sorry she got this diagnosis and I am praying for you all.

Jeanne said...

Teresa,

Sorry about your excruciating back pain. I have had herniated disks (very painful) and years ago I did everything from physical therapy to massage therapy to chiropractic for my back. All of the above provided temporary relief. It wasn't until I had acupuncture that my back problems got long-term, significant relief. I rarely have back pain anymore. Acupuncture has helped me SO much with SO many of my conditions.

I'm really sorry to hear about Bek's diagnosis with POTS, as I know it's not what you wanted to hear. :( However, as you pointed out, you and your family are already well-versed on POTS and this can only help your daughter. Knowledge is power.

I know this may seem little consolation and it's certainly understandable that you don't want her to suffer as you have. It sounds like she was already suffering, though, and now you at least have a name for it so you know what you're dealing with.

That was a great tilt table test video.

I am thinking of you and your family.

Hopefully, she will go into remission... as you have described that some her age do.

I am sorry to hear about what your friend Anita is going through. She is fortunate to have a friend like you supporting her through her grief.

With everything that's going on, try to remember to practice good self-care. It would be easy for you to let everything around you get you very stressed out and that will only make you sicker. So do what you can to try to prevent that from happening so that your health won't suffer because of what's happening around you.

Jeanne

Lakshmi said...

Very sorry to hear about your daughter. She is blessed to have a spirited mom like you. You all are in my prayers.

Dee said...

Hi Teresa,

Girl you are such a strong woman. My heart goes out to you and your daughter who have inherited not only the medical issues but also your strength.

Thank you so much for the comment on my blog. I will keep visiting and commenting when I get home and have regular internet access.

Deb said...

I'm so sorry about Bek's diagnosis.

That's probably one of the most difficult things you've ever had to hear.

But I hear your strength.

And your faith coming through.

Hers too.

Both of you are in my prayers.

Sweet dreams.

De said...

I'm so sorry that your daughter has POTS also. I don't have it but my daughter, Meg (who also blogs about her POTS) and my son both have it. It is heart breaking to watch them suffer. I'm not sure how we're going to get my son through high school. He started having problems early in his freshman year and we've been struggling ever since. The only thing that keeps our family going is God's grace and I am so thankful for that. Best of luck to you and your family.

De said...

I'm so sorry that your daughter has POTS also. I don't have it but my daughter, Meg (who also blogs about her POTS) and my son both have it. It is heart breaking to watch them suffer. I'm not sure how we're going to get my son through high school. He started having problems early in his freshman year and we've been struggling ever since. The only thing that keeps our family going is God's grace and I am so thankful for that. Best of luck to you and your family.

Miranda Powell said...

Hello... I stumbled upon your blog after googling Blog and Dysautonomia. Your's was the first I found. I am truly sorry about your daughter. I have been diagnosed with Dys. as well, and having 2 small children one of which tires very easily during the summer heat and has gotten sick from it before, I understand your worry about your daughter having Dys. I pray every day that my children never indeed end up with this. I pray that my oldest child who tires so quickly in the summer months, is just not fond of the summer heat instead of having the same symptoms I have. I will be praying for your family. And I will also continue to follow your blog. It's so helpful to find others who can identify with Dys. and it seems that you also share a strong faith in God and his grace as I do. Thanks for sharing your story, and my God help your daughter to find remission. Miranda
http://mirandapowell.blogspot.com

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