Where have I been?

Well, first things first......NYC Baby!!!!! Yes, Praise God that he gave me enough strength physically and mentally to meet one of my goals of being able to go on a previously planned weekend getaway to NYC with Lorren. And if you ask Lorren, she would tell you my stamina was up as we joked about the "marathon" I ran trying to see all the sights in just 2 days.....or maybe it was just to keep me warm in the cold weather :) We got to stay on Times Square, eat NY pizza, go to Rockefeller center, take a carriage ride in Central Park, experience a NY cab ride (no, we did not find the "Cash Cab"), waved to the family on a webcam at 46th and Broadway, take a 2 hour boat cruise around Manhattan , see the Statue of Liberty, Ground Zero, Mary Poppins on Broadway, eat a NY hot dog, shop, have a few Starbucks, and just truly "take it all in". It is amazing how God can use something so "simple" to help with my healing. First, I got to be with one of my best friends in the whole world who I could talk to and not feel judged, I got to see more of the magnificent world he created, I got to laugh often, and funny enough....I think the message I got through "Mary Poppins" was the most profound. YOU HAVE TO BELIEVE IT!!!!!!

I was in the hospital just days before the trip again trying to figure out just what is causing what, which medicines are helping and which are hurting, and just trying to get some answers. I still have a lot of unknown and need a lot of prayer - if everyone could join me in praying for a MIRACLE. Specifically, I still have a lot of fatigue, "seizure spells", numbness in hands and feet, depression/anxiety, an unknown skin rash on my legs (which I will be seeing a dr for this week), and general flu like symptoms. I am so thankful for everyone praying for me because there are days when I am optimistic and then there are days I am discouraged and feel like I have nothing left to pray. I am also thankful for my husband and kids....what a blessing!!!! God had this planned and he gave me a husband who is so patient and loving and kids who know just the moment to "melt my heart" and make me smile. Please also pray for my patience.....in two ways - patience to wait on God's timing in the cure of my disease and patience to handle a 2 and 3 year old. I want to be the mom I am supposed to be and as much as I love those girls, I feel like I let them down when I can't be there for them like I want to be. You know, it is funny because as little as they are - God allows them to "be there for me".

Apologies

Well, a couple of apologies....first, sorry for the lack of blog posts and second, sorry for the lack of returned calls, emails, etc

I would not be honest if I did not admit that I am struggling physically and emotionally. This is a place I have never "been " before and I am trying to stay positive...thank you for your continued prayers.

Good days, Bad days

Well, today started well....I am feeling a little better so, I decided to finally go get the massage that my brother in law bought me since my main symptom is pain. It helped a little at the time, but after getting up and around I felt achy again. In general, my breathing still is difficult...mostly if I talk a lot :) or eat. I am very fatigued, but working on getting up and around to get my energy back.

One thing I do want to tell is that we got the test results back on Jadyn today and she DOES test positive for the gene HLA-B27 which is what I am dealing with. It is the gene responsible for the autoimmune process. She will see a rheumatologist within the next month. She is a very active little one, but has off and on complained of joint pain, cried, and limped with it. So, keep her in your prayers because we want her to be one of those that has the gene, but never deals with any "active disease".


Ok, on to my highlights of my day......the good things that made me smile....Jadyn announced to her class that it was my birthday and thirteen 3 year olds sang to me :) and when I picked her up, they had made me a wonderful card. I got a few new things for my trip to New York at the end of this month...I know, you are wondering how in the world with all of this am I going to New york...well, so am I, but it is my motivation. I am so excited to be able to see NYC decorated for Christmas....a quick 2 day trip with my sweet friend, Lorren :) Ummmm, other highlights, jadyn and cady taking pics of Seth and I tonight (I think they might turn into little photographers), actually going to eat at Outback with my family - including my mom and stepdad, getting tons of calls and emails, Seth smiling at me because I love his smile, sweet hugs from my kids, and best of all....feeling a peace tonight despite all that is happening.

How am I really feeling?

"Be Strong and courageous. Do not be terrified. Do not be discouraged. For the Lord your God is with you always." Joshua 1:9

This verse really hit home with me this morning in my quiet time. So, yesterday was very hard for me because I had two doctor appointments with not so great news. SO, the rheumatologist has diagnosed a "probable" diagnosis of ankylosing spondylitis and the lung doctor gave a diagnosis of interstitial lung disease. Why this is happening, I do not know.....I know there is no cure, but "treatment" for the symptoms which have side effects often worse than the disease itself. And since I am being completely honest here, I have started suffering pretty significant panic attacks.

I am so thankful for my precious husband and little girls who can always put a smile on my face. Jadyn was at school today, but I got to sit outside in beautiful weather and just watch Cady play....so carefree....she moved from the sandbox, to the swing, to sidewalk chalk, to bubbles....and I realize how I miss that "carefree" feeling.


So, when you ask "How I am feeling?" The real answer is blessed, but frustrated.....hopeful, but scared.....and on the physical realm - achy, tired, and off and on short of breath. Please continue to pray for the relief of pain and ANXIETY....the pain is most intense in the chest, ribs, abdomen , and lower back - I feel like someone is just squeezing me and there is an intense pressure.

My mom has basically lived here for a month now and will be going home tonight - and although it is only 20 minutes away, it is going to be difficult....pray for her as well since she has now caught the upper respiratory infection from my girls...we like to share in this family :)


The gene I have that may predispose me to these disorders may be passed on to my children so PLEASE pray that they are healthy as well. We did have Jadyn tested Wednesday because she has complained of joint pain and sometimes limps, cries, etc since she was just able to walk. I will update you when I get the results next week.

THANK YOU !!!!!!!

Believing for a Miracle

I had one of the most interesting experiences today - I went to my first acupuncturist/homeopathic medicine "doctor". Ok, so as Jenny can tell you, I did not get very far with the acupuncture because 2 needles in - i was ready to be done. I half jokingly explained that i have a mild post traumatic stress disorder from all the blood draws and IVs I had within the last week. I really had ten (at least) in my arms over a 4-5 day period. Anyway, I was very fascinated by the "energy" testing done through pressure points. Without any information, this man was able to pinpoint so much of what the doctors have taken forever to tell me....so, i will try his "remedies" and pray for a miracle. I so much have a heart for "natural" medicine.


So, Jadyn now is the one with 102 fever and Cady is not feeling well either, but praise God that we all are taking care of each other. It is really actually very sweet and exhausting all at the same time.

I am enjoying all the phone calls, emails, dinners, prayer, etc....i have always had a hard time "accepting" help so, this is a learning experience for me. Friends get closer, you see the power of the church, family pulls together, and acquaintences become friends through the process.

I have a friend named Chris in Florida - have not seen in literally almost 10 years. I have never even met his wife and I received an email from her....mother to mother.....she said one of my blogs brought tears to her eyes and that she would keep me in prayer. What a simple thing and yet, it made my day.....just to know someone who i do not even know is "there" for me. And I am with Lorren - I am believing for a miracle!!!!!

My treat for Halloween

One of the hardest things this year was to miss the fall festivities with the family....don't think I won't be saving a pumpkin to carve when I am able :) I wanted to take the girls to the pumpkin patch, get them dressed for Halloween, attend the school parties, watch their faces light up when they said, "Trick or Treat", but instead I was still in the hospital. You know what, God allowed me a special treat that night - my girls came to see me!!!!! Jadyn even helped the nurse put in a new IV :) and when it was time for them to leave - they told me they didn't want to go trick or treating, they would rather stay with me all night!!! What a treat for me.

Grandma had taken them to their school parade that morning and to "Boo at the Zoo" the week before with pappaw, but Halloween night they got to spend with Mrs. Amy (their babysitter) who took the trick or treating and to a carnival. I am so thankful for my friends.....and that they love my kiddos enough to give them a special night. Angela made Cady her special Halloween outfit and Cady just keeps saying, "Mrs Angela do this" - pointng at her legs......I hope I am as good a friend to others as they are to me :)

If someone could teach me how to put pics, i would post some. Jadyn was a beautiful pirate and Cady a ladybug :)

No News - I wish meant good news

There has been no update on my blog lately because I have been in the hospital for several days and still extremely frustrated - no "definite answer" just scary stuff....My breathing is being "attacked" and I can breath at 70%....my heart is persistently beating around 100 bpm and they scared the you know what out of me as they rushed me to the cardiac unit after seeing a heart arrythmia on the monitor....why did i get sent home, because my insurance didn't think i met requirements to stay longer......so sad that they have now overruled the doctors. Anyway, frustrated, but trying to stay hopeful!!!

I totally want to say thank you for EVERYTHING EVERYONE is and has been doing for us....prayers, meals, babysitting, flowers, you name it, it has been done. My mom, Seth, and the girls are having a hard time too so, thank you from them. Ginger, thank you for support.....family is always there for you :).....I am not the best at talking right now, but am getting there. This is a long, unexpected road for me and my family and I appreciate you guys keeping us in prayer. I think my girls officially think grandma lives here now....grandma is even at the grocery store for us right now :)