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 !!!!!!!

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 :)

Why Worry?

Well, I have been able to get up a little more today, but the condition in my eye is back (uveitis). I try not to focus on the unknown because I will admit I get anxious about a lot of things, but I need to honestly say I am scared and a little frustrated. I have high and low points each day.....i become super optimistic and then the reality of my "ailments" kicks in and the "what if's" start hitting me hard. I hurt and I am tired, emotionally and physically. I still have a lot of doctors to see and so many conflicting, but scary diagnoses.

I found theses scriptures about worry and anxiety...I try to claim them for myself and I hope they will help some of you...



“An anxious heart weighs a man down, but a kind word cheers him up” (Proverbs 12:25, NIV).

“I sought the LORD, and he heard me, and delivered me from all my fears” (Psalm 34:4).

“Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus” (Philippians 4:6-7).

“Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you” (1 Peter 5:6-7) (Also see Psalm 55:22-23)

“Then Jesus said to his disciples: ‘Therefore I tell you, do not worry about your life, what you will eat; or about your body, what you will wear. Life is more than food, and the body more than clothes. Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds! Who of you by worrying can add a single hour to his life? Since you cannot do this very little thing, why do you worry about the rest?’” (Luke 12:22-26, NIV). (Also see Matthew 6:25-34)

“Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise him, my Savior and my God” (Psalm 42:5).

“Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight. Do not be wise in your own eyes; fear the LORD and shun evil. This will bring health to your body and nourishment to your bones” (Proverbs 3:5-8).

“…the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God’s will. And we know that in all things God works for the good of those who love him, who have been called according to his purpose” (Romans 8:26-28).

“And my God will meet all your needs according to his glorious riches in Christ Jesus” (Philippians 4:19).

“I can do everything through him who gives me strength” (Philippians 4:13).

The apostle Paul found his strength in God, He reminds us that, “I …have …been in prison …frequently, been flogged …severely, and been exposed to death again and again. Five times I received from the Jews the forty lashes minus one. Three times I was beaten with rods, once I was stoned, three times I was shipwrecked, I spent a night and a day in the open sea, I have been constantly on the move. I have been in danger from rivers, in danger from bandits, in danger from my own countrymen, in danger from Gentiles; in danger in the city, in danger in the country, in danger at sea; and in danger from false brothers. …I have known hunger and thirst and have often gone without food; I have been cold and naked. …Who is weak, and I do not feel weak? Who is led into sin, and I do not inwardly burn? If I must boast, I will boast of the things that show my weakness. …I will not boast about myself, except about my weaknesses. …[God] said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong” (2 Corinthians 11:23-12:10).

“So we say with confidence, ‘The Lord is my helper; I will not be afraid. What can man do to me?’” (Hebrews 13:6).

“…put your hope in the LORD both now and forevermore.” (Psalm 131:1)
Also read: Psalm 139:1-23

The possible causes of anxiety and fear are many: Conflict, health problems, dangerous situations, death, unmet needs, spiritual problems, false beliefs, etc.
“According to the Bible, there is nothing wrong with realistically acknowledging and trying to deal with the identifiable problems of life. To ignore danger is fooling and wrong. But it is also wrong, as well as unhealthy, to be immobilized by excessive worry. Such worry must be committed to prayer to God, who can release us from paralyzing fear or anxiety, and free us to deal realistically with the needs and welfare both of others and of ourselves.” (Dr. Gary R. Collins, Christian Counseling, p. 66.)
Some general, common sense suggestions for those weighed down with fear, anxiety or worry…

SIN IN YOUR LIFE - Sometimes fear and anxiety are the result of one’s own sin and guilt. If you have committed a sin or done anything evil, your fear and anxiety is probably God and your own conscience trying to get your attention. You need to repent, confess your sin, seek God’s forgiveness, and set it right.
SLEEP - Humans generally need 8 or 9 hours of sleep per day. Sleep deprivation can increase anxiety. Get enough rest. If you cannot sleep, you may need to seek God’s help and perhaps that of a physician.
BE MORE REALISTIC - Many people are worried and anxious about events that will never actually will happen to them. Relax. Focus on today. Take life one day at a time.
LISTEN to relaxing, soothing music. There is some great Christian music available that can help you focus on God and leave your fears and worries behind. It may also help to listen to good Christian speakers and teachers.
FUN - If at all possible, do something that you enjoy. It is good to get some recreation on a regular basis. Take a break. Get your mind off your fears and worries, and have some fun.
TALK to someone. Don’t hold all the anxiety inside. It can be a big relief to share your fears and worries with someone else -- a friend, relative, pastor or counselor. If fear and anxiety is an ongoing problem in your life, schedule a regular time each week to talk with someone.
TAKE ACTION - If there is something practical and wise that you can do to alleviate the problem or avoid needless danger, take action. Don’t put it off. Procrastination will generally raise your anxiety level.
EXERCISE - Medical studies show that exercise can help lower anxiety. If you are healthy enough to exercise, try it. Regular brisk walks, running, swimming or other exercises can be a real stress reducer.

There is just something about a mama....

"Dear God, Please help my mama get well because grandmama really wants to go home..." That was Jadyn's prayer last night that made all of us smile. Yes, thank God for my mama....Jadyn is right, grandmama wants to get home, but she is so wonderful to help us through this difficult time. My mom has shown me even more the kind of mom I want to be....she just does whatever needs to be done without even being asked or complaining. I know once I had my girls, the reality of how much I can love someone was so amazing and it continues to get better and better. WOW....and how much more does our God love us? That is something I can't even comprehend, but throughout this time in which God has commanded me to "Be Still", it has been on my mind. He loves me more than I can imagine and doesn't like to see his children hurt....Thank you God for being the ultimate physician, my healer....



I am able to get up some today and am just praying for increased strength and stamina....The bible study I recently joined was called "If God is in Control, Then Why Do I Have a Headache?". Pretty ironic since i have spent the past several weeks with an excruciating headache and had to miss the majority of the group study. What I have learned is how much I need to take care of my body....Eating the things God intended for us to eat, resting, exercising, and taking time for my spiritual health....Please continue to pray for strength in all these areas.

Identity Crisis

Well, I am still struggling with just sitting up and dealing with extreme vertigo ...thank you for continued prayers because I am encouraged to know I am not alone. With all this time to sit and think, I have come to realize how much it bothers me that "sickness" can become a person's identity. I do not choose to be sick, but I am choosing to get well. You know, I have had a lot of health issues even as a baby, that again were out of my control, and it has always been an issue with me as far as "being embarrassed" by it. I have always been so concerned with people thinking of me as "sickly" and it is hard to really let people in on how I feel because I have such weird, random stuff. It is something I have had to learn to deal with....my mom always encourages me by reminding me that despite they way I feel, I always enjoy life and do not let it get me down. This time - i have been knocked on my butt. Everyone in my family is so supportive except for one....not in my immediate family, but rather someone who chooses not to look past my smiles and see that i am really hurting, but rather in an accusatory way assume that "I am not really sick". Who would want to miss out on all the special stuff going on around them to feel pain and total helplessness? I am still a wife, a friend, a mommy, a prayer warrior.....so, i want to avoid the "label" as "always sick". You know, when you describe a person it is something like, "the sweet one, the blonde one, etc....", but as someone in a health crisis.....not to be known as "the sick one".

the sickness drama

Ok, so this all started almost 3 weeks ago when, just like the rest of the world, i began running a fever and getting achy. So, the assumption....something viral from the little ones. Anyway, I really developed very little other symptoms, but after 3 days felt so blah that i decided to stop at an urgent care clinic after work. At this point, my fever was at 102.7 and all i wanted to do was lay down, but the doctor quickly did a few tests and informed me "You are a very sick young girl" stating that i had a severe kidney infection that if untreated could cause serious issues like kidney failure. He gave me a shot of antibiotics and would not let me leave until someone came to drive me. I was told to go to the hospital if things worsened. SO, Seth came to get me and within an hour, I was in the hospital with a fever of 104.8. Well, as bad as I felt, i told the above story and the ER doctor did the same tests and informed me the kidneys were perfectly fine, gave me tylenol, and sent me on my way. without figuring out what the fever was from....very sad that within one hour 2 doctors have 2 totally different opinions....well, i went home and continued to feel crappy. After running fever for 7-8 days, i realized the vision in my left eye was dim. When I looked in the mirror, my left pupil was huge and my right was not....back to the dr the next day, still not sure where the fever was from, but concerned about the left eye....sent me to the ophthamologist ASAP. So, when i saw the eye dr, he wanted me admitted immediately due to a condition in the eye called uveitis and optic neuritis....he was concerned because of my history of lyme's disease.
Seth took me to downtown Herman Hospital where I was admitted for evaluation. Tons of stuff done including a spinal tap ...the conclusion, my lyme's disease and a different autoimmune disorder which is complicated, but deals with a genetic marker HLA-B27. So, after the spinal tap, i followed instructions to lay flat "forever", but still developed a "spinal headache" which is excruciating pain with sitting up, but improves with lying down. It has been 9 days since the tap and i still can't get up for more than a couple of minutes at a time. After the tap, i could not hear well out of my right ear and developed severe vertigo so I then saw the ENT doctor.....well, it looks like my eardrum burst from the spinal tap and now has a large hole which will require surgery later on.
I did go for a "blood patch" several days ago where they inject my blood into the spinal cord to try and close the leak from the previous tap, but it does not seem to have worked.
So, i have been lying flat for almost 3 weeks and it is so hard physically and mentally....my mom has stayed with us some, but Seth is working and taking care of the girls too. It is so sad not to be able to play with them and to see them get sad for me. Jadyn prays for me all the time and last night my heart broke as she sat next to me, folded her hands, and prayed "Dear God, please don't make my mom be dying because she is the best mommy in the world." A three year old, tears fell because the Lord knows the thought of ever leaving my girls is devasating...i was at an emotional low after that. I went upstairs and closed myself in a room to just sob....have you ever prayed so much you just had nothing left to say. Thanks to all my friends, I knew i had tons of prayer out there for me. As Star said, let my friends fight for me....As I lay there sobbing, I asked God for a sign of encouragement....within minutes I heard someone say "Whitney"...assuming it was Seth, I said "What"..."It is Tray, can I come in" ( Tray is a friend, neighbor, and pastor). I was totally caught off guard and said"No, Not right now please" and he said "OK, I just wanted to come over to let you know I love you". As he went back downstairs to be with Seth and the girls, I realized that message was from God. Tray didn't know what was going on, but God told him to come over and talk with me because I needed prayer. He and his wife are amazing that way.
So, I appreciate the continued prayers because it is hard for me to accept help, but I need it and my family needs it. As my buddies are all together in Fort Worth this weekend just being together, i lay here in the same spot missing my friends, the playtime with my kids, dates with my hubby, and yes....I even miss being able to get up and clean my house. I can get up for a few minutes, but then have to lay down....how long can this go on? No One really knows, but may last several weeks and i am praying for a full speedy recovery.
I have been bad about returning emails and calls, but i want to talk to everyone....just hoping to feel better soon. I miss seeing friends as well. Besides my mom, stepdad, Seth, my girls, Kurt and Angela, Kathy, and my awesome brother in law ( who i only got to see one day while he was here from Iraq)....i have been pretty secluded. My mom and stepdad have been awesome with the girls and even forfeit their vacation to Colorado just to help us out.....
One if the songs that has really helped me through this is my profile song by Mercy Me "Bring the Rain"...Listen if you get a chance...
So, be ready, when i can get up again, i may just come visit everyone because i am going to have so much energy wound up from lying down so long....