When i look at photos of Sophia being silly,
or pictures where she looks vibrant and full of life.....its so hard to believe how she feels underneath it all. Since she was 5 weeks old my sweet daughter has never felt completely normal...i never realized until recently how bad she has always felt.
A couple of Days before her 6 week checkup Sophia came down with Pertussis. My sweet baby was poked and prodded over and over...she never cried, never wimpered just watched everything and everyone around her (as much as a 5 week old could) she was in isolation for 10 days...fighting for her little life.
as the years went by she was always sick....more sick days than well days.
When my job took our family to Breckenridge Colorado when she was two...she was sick nearly every day. We finally figured out that she had altitude sickness, constant vertigo that never went away...watching her walk was like watching a drunken sailor. The town of Breckenridge sits at one of the highest altitudes in the country. Needless to say...we had to move back to sea level.
When she started school she missed more days than she went....one thing after another. They wanted to bring me to court regarding her attendance. If you looked at her funny she got sick.... The most common thing out of her mouth was complaints of nausea. Her file at the doctor was beginning to look like a novel...a medical mystery of sorts, because we could never pinpoint what was wrong.
In 5th grade she came down with a virus that settled in her C-spine. Her muscles were so weak she could not hold up her head and had to wear a neck brace for a month...and missed the last 5 weeks of school.
I could go on and on about all of the strange viruses and symptoms she has had for the last 18 years....
Then the other day she came in the house and fainted, and the roller coaster of symptoms began yet again. Nauseated, blurred vision, fatigue, back aches, muscle ache, pain in her abdomen. Crazyness!....because when you look at her she appears perfect.
When i look back now i realize that Sophia has probably not had a "normal feeling" day in her life. I cannot express how sad that makes me feel. I have always felt like her doctor must think i am nuts always bringing her in to try and figure out why she is always sick....until Monday when everything changed.
We went in to see her pediatrician yet again....and he went through the normal series of questions and tests. He tested her reflexes and they were hypersensitive, i could see her doctors face become a bit more concerned as the visit went on...and a conversation about salt came up. Salt!.....who would have known that Sophias intense craving for salt her whole life would lead to an incredible amount of lab tests. She used to eat butter just for the salt...(eww )Just goes to show you have to tell your doctor every thing...even things you might not think matter...they do!
She is such a trooper...
She is so comfy....putting the lab tech at ease. Joking, laughing....coping.
and scared. Im scared....and mad. Mad that it has taken this long to finally have a direction to look. Mad that it has taken this long to start getting to the bottom of why she is always fatigued....mad that we didn't have more of a clue while she was in school. They are testing for kidney diseases and a few other possibilities.
Please keep my darling girl in your thoughts and prayers...I would love for her to know what it is to feel truly healthy...inside and out.
Good luck with all the exams. Hope they find out what this is!!
Lots of positive thoughts!!!
Posted by: Ari | September 07, 2011 at 08:20 AM
My heart goes out to your lovely daughter and you. Sending you all my warmest and most loving thoughts for medical clarity, simple solutions, and much much wellness.
Posted by: Charlene Kingston | September 01, 2011 at 02:04 PM
Marah- I am sitting here with tears in my eyes for her and you. We bring these beautiful babes into our lives and want to make their lives perfect. How frustrating it must be to not know how to help her.
I am keeping you all in my prayers that an answer comes swiftly. One that can help her on the road to a healthy and happy existence.
Positive thoughts and prayers sweetie.
Posted by: Dawnll from Dawn's Craft Place | August 31, 2011 at 08:13 PM
It is bad enough when chronic illness is a part of our own lives. When it is our child, it is so hard to take and stay strong.
Praying that Sophia will be well and be able to look forward to many well days. She is such a beautiful young lady. Prayers for you and the healthcare team.
Posted by: Bec Kilgore | August 31, 2011 at 04:04 PM
Sending you prayers and hugs! I can't imagine how hard this is for both of you!
Posted by: Lisa Clark | August 31, 2011 at 01:56 PM
Lifting darling Sophia up in prayer right now. Praying for guidance and wisdom for the doctors to pinpoint exactly what the problem is and for an easy and successful solution. And, praying for you Marah - it is so difficult to see our children in pain and feeling so helpless. You are a fabulous mom. xx00
Posted by: Barb Tourtillotte | August 31, 2011 at 11:41 AM
Marah, I feel for you guys- I'm going through this right now! Since I was a teenager, I've had incredible fatigue, very low energy, not been able to keep up with people even though I've been physically fit. I did sports, but I would always get tired out first, and experienced shortness of breath, which made me look and feel out of shape, even though I knew I wasn't,I have a body shape similar to Sophia's.
I've had diagnosis run the gauntlet from depression to anemia, to blaming my allergies for tiring me out, and I have been told by so many doctors to eat well, drink water and exercise. Which I do. But when I can't muster the energy to keep my eyes open, I'm probably not going to go for a run. And I've also always craved salt.
I'm 29, and I went to a Naturopath last month, and had a life-changing experience. Right away she suggested having an adrenal panel done, as adrenal fatigue has many of my symptoms. She also suggested trying a gluten-free diet, which I'll be starting next week. Things are looking up, and I'm hopeful. But I came home that day and sobbed and cried because I was so angry that in 29 years, no one has ever been able to help me. I'm so happy that you and Sophia are having a breakthrough. I wish you guys the best. Oh, I also second www.butyoudontlooksick.com And feel free to email me if you have questions or need more resources.
Posted by: JenP | August 31, 2011 at 11:37 AM
My prayers are with you and your beautiful daughter. I hope hope they find what's wrong very very soon so that she can enjoy life to the fullest. Good luck
Posted by: Yolanda | August 31, 2011 at 11:30 AM
Good wishes and lots of prayers for Sophie. Such a beautiful, vibrant young lady, she deserves to feel "GOOD". My hopes for a speedy diagnosis and recovery!
Posted by: Jean | August 31, 2011 at 11:17 AM
Marah,
Praying for you and Soph...and her Dr.'s.
<3 you gals,
Julie
Posted by: Julie Rhodes | August 31, 2011 at 11:17 AM