What keeps me going

The days seem harder and i just have to THANK GOD for family and friends....

Happy Holidays!!!

I hope everyone has a safe and happy holiday....with everything going on, it has been harder to get inot the "typical holiday spirit", but I realized this could be a good thing. Really, all I NEED to remember is "Jesus is the reason for the seaason". Jesus's birth was a miracle and I am expecting a Christmas miracle this year :)

Thank you to everyone who continually prays for us and goes above and beyond to make sure my family is taken care of. We appreciate it soooo much.

The latest, i am home for two days walking around with a contraption on my head to monitor seizure activity. I get to take it off tomorrow. I still have significant numbness in my hands and feet. The recent "diagnosis" includes a seizure disorder, vasculitis, blood clotting disorder, and an autoimmune dysfunction. You know what, i am not accepting that "there is nothing that can be done" because God can do anything he wants (thanks Aaron) and he knows my needs. I am accepting his healing and working on perseverence.

Well, if all is well, Seth and I are taking the girls for an overnight trip tomorrow night to Moody Gardens to "get away" and be back Christmas eve to really concentrate on what the true meaning of Christmas is. The girls are excited about Jesus's birthday......and santa coming too. Keep us in your prayers as you are all in mine.

I hope you get all you want for Christmas - all I want is my health :)

The truth hurts

What am I thinking today - well, I am frustrated and can not understand why each day seems to bring more negative....I still have my positives - My girls, husband, friends, and family......but man, this is hard. Emotionally, physically, and spiritually this is a challenge and although I know in my heart God will never give me more than I can handle, I sure feel close. I found out yesterday that my brain MRI showed some changes that suggest a condition called vasculitis. This is an inflammation of blood vessels which can cause a clot to any organs in the body and cause some very serious consequences. My main symptom right now is numbness in my hands and feet which may sound petty, but can be very annoying and scary. I still have a lot of shortness of breath as well.

I want to scream "why", but I know God has a reason for everything and I should not have the "poor me" mentality. I am so thankful for each moment I get to play with the girls, but scared of what the future holds. Sorry, if this is negative, but it is real life emotion and not "What I should be feeling". It gets hard to pretend everything is ok after awhile.

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 !!!!!!!