In the midst of the madness

     I know this is a crazy time of the year for all of us. So much to be done, so little time. I hate all the social settings where you feel like you have to eat even though you know what it's going to do to you. There's always the option to not eat, but that just makes people feel uncomfortable about eating in front of you. I used to do so much for Christmas with my kids. We made my famous "Heavens To Betsy's Gourmet cookies." we made stockings for all of our friends and family and on top of the cookies we made all kinds of candy, from peanut butter balls to coconut balls, toffee, fudge, turtles, candied pecans, For a while the kids tried to keep it going, but they did not know how much went into it and how worn out they would be. I did all the main stuff and when I stopped they got overwhelmed so we changed the traditions. We stopped running all over creation on Christmas day and decided to let the kids really enjoy their Christmas. Everyone knows if anyone wants to come here, they are more than welcome, but we try to spread out family gatherings. These days it seems to take so little to knock me on my keister. With my dad in the hospital, that just magnifies things.
     But as I was saying in my title, in the midst of the madness tomorrow My sweet, amazing, wonderful, handsome gentleman Clint and I will be married 20 years. I seem to have been sick more of those years than not and it has really taken its toll on our whole family.
     Don't get me wrong, I would no change one moment of my life, from the heartbreak, sorrow, loneliness and now the illness have all come together to make me the woman I am today. The person God created me to be, and eventually the voice for the voiceless and change the world one moment at a time. Thank you all for lifting our family up in prayer, know that we feel the effects of your prayer.
     I am going to try to rest a bit now, wish me luck!

Doctor

I am sorry I have been way to sick to write in here or do just about anything. My symptoms hit me like a freight train. No matter what medicine I take, no matter how much I cannot control my nausea or my severe pain and migraine. I am doing a lot of sleeping just to try to not feel. But that really doesn't work even asleep my pain is still there. I am so weak and shaking in pain and weakness. I am ready to be better

Another loss

     I write on here knowing that God is going to heal me. Knowing that He is using me as a voice for motility disorder, gastroparesis, and Autoimmune Autonomic Neuropathy, and yet people are dying daily starving to death for a cure. An 18 year old was lost to this dreadful disease. It makes it hard to be excited knowing I am going to be healed when babies are dying.
     I try to hide how sick I am but that has not only not worked, I know my kids, my babies who I am supposed to protect and be a safe place for cry in secret for me. The latest thing I found out was my sweet Elijah went to spend the night with his brother and was feeling very bad but instead he acted like he was fine and when Noah walked out he would grab his stomach and say oh ow this really hurts, this hurts so bad, and when Noah would walk back in he would act illiterate he was fine. Unintentionally I taught him that.
     My doctor has told me that it is just a matter of time before they take away my central line and IV nutrition and try to put in a feeding tube. The world renowned expert on all things gastroparesis knows and has told many doctors that I am not a good candidate for a J/G tube. My oldest, Noah is a JR in college and is already being paid for research in Biomedical Engineer and I know he will do everything in his power to help. My daughter, Hope is going into Genetic Consoling. My children will fight for research, they will research and find a cure, but they need to be funded. Doctors and patients both need to be trained how to approach this horrid disease and given new forms of symptomatic relief and eventually a cure. Please pray that we can stop #starvingforacure and stop losing young innocent lives to this atrocious disease.

A different kind of Horror Story

Guess what... I am still here, I am still sick, and I spend everyday fighting for my life. I need your help to spread awareness and understanding of this horrid disease. On a video someone made, she made the point that over 5,000,000 people have gastroparesis and the chances are, you have never heard of it. obviously, if you follow my blog, you have heard of it. But I need your help spreading the word, because there are so many people that get misdiagnosed, sometimes put in a mental ward and made to think they are crazy, or doing this to themselves, and so many young impressionable people out there believe what their doctor tells them. When I was in a medical trial with Dr, Thomas Abell, my nurse told me so many horror stories about how doctors treat and meanly mistreat patients with this disease. I was happy to be a part of research and I hope what they learned from my body will make a big difference in the medical community. I went 10 years misdiagnosed and when I got the diagnosis I was told, we can try this medication, and if that doesn't work, we can try one other medication. If that doesn't work, there is nothing else I can do for you. You see, that doctor knew first hand what this disease does and he wanted nothing to do with it. It didn't take long before I had my own horror stories to tell. I needed IV fluids and my local doctor had no hospital privileges, I went to a doctor in search of only IV fluids and after sitting in his office for hours, apparently losing 6 pounds in 2 weeks and the fact that my bloodwork did not show enough abnormality, because that is a crazy part of this illness, you bloodwork looks fine unless you know what to look for, atleast until you are at death's door. He said that I looked dry but that I was not telling him something, a nice way of saying I was lying, lying to get IV fluids of all things. He sent me home, the next day I lost another 4 pounds and ended up in the hospital. I explained the ZAP method Dr. Abell which was nothing by mouth to let your stomach rest and IV fluids, Zofran, and Phenergan. After a week in the hospital, I still could not hold down a sip of water, but since the ZAP method was not working they unhooked my IV and sent me home. It wasn't long I ended up back in the hospital. they finally checked my prealbumin and said it was a little low at 14 and put a PICC line in and started IV nutrition. Right now my prealbumin is low at 18 which tells me 14 wasn't just a little low. Before I left the hospital they put in a tunnel cath, basically a central line that tunnels under my ribs and opens 3 centimeters from my heart and i have been on IV nutrition ever since. At one point, I went to the ER because there was a hole in my central line which would inevitably land me in ICU with sepsis. The doctors did not know what to do and after several hours and many times of asking for help they said they were waiting on my results, only they had not run any bloodwork or tests. The nurse tried to get some blood and blew my vein and when she tried a second time the PA said not to worry about it and they all went in a room and had a conversation about me. They came out, labeled me as a drug seeker and told me not to bother going downtown or to any other hospital. That doctor i never saw should have been fired, but instead, stuck me with the entire bill making sure insurance would pay nothing. I finally put a call in to my surgeon, who placed the line and when they got the repair kit in they used the downtown ER to repair it. The nurse that was at the ER the first time, was at the downtown ER and she came in and apologized to me for how they treated me. i could go on and on with similar stories but that is not the reason I am writing this today, I am writing this so everyone who reads this can share it all over the world, to protect the young boys and girls and everyone faced with this journey, especially if they don't even know what they have yet. If you are throwing up and don't understand why, if you have sever stomach pain, severe bloating; I can go from a fairly flat stomach to looking like i am 8 months pregnant within a 5 minute period; if you have been told you have an eating disorder and didn't believe it at first, look up all the symptoms for gastroparesis and insist that your doctor does a gastric emptying test because it is the only way to be sure. know that your gastric emptying tests can vary because in most people it is a cyclic problem, meaning it comes and goes with no reason or rhyme. I started out like that and now my stomach and small intestines are completely paralyzed. Please share this, please help people see their condition for what it is!

Elijah

     Please pray that Elijah does not have my genetic mutation because at his age I started getting recurring appendicitis until I was 12 and has to have an emergency appendectomy, after that it was illnesses no one could figure out and no one else got sick. As an adult it took over 10 years to finally get the right diagnosis, and I don't wish this on anybody. Even last night Elijah kept trying to do things to make me feel better because he kept saying " you are so much sicker and have been for so long."
     I don't want his whole childhood to be remembered as having a sick mommy. Noah and Hope have really great childhood memories and yes Elijah does have a lot of great memories but I just want him to know me as the mom Noah and Hope know.
     Right now and all night long he has been holding his tummy from pain and I just pray he gets better right away and no one anywhere in my bloodline has the illness I have. For those of you in this world that know this illness and all the frustration that goes along with it first hand, I pray they find a cure soon and very soon because no one on this entire planet, no matter what kind of person, deserves this dreadful disease.

The past 2 weeks

     I knew I was having a bad cycle, but the past 2 weeks all I have done is sleep, wake up with severe nausea and pain, take my medicine and go back to sleep. That's 2 weeks of my life I cannot get back but I also don't want to stay stuck in this cycle and miss all of the important milestones in my family's life. I think Hope has a really great 18th birthday. Coming up shortly will be Noah's 21st birthday, Our 20th wedding anniversary, Christmas, and then Elijah's 10th birthday. All very significant milestones. Everyone who knows me, knows I really like to do things big, to make everything as perfect as possible. I have learned how to pull back because the sicker I got, the less I was able to do.
     I really need your prayers for healing, for uplifting, and to be able to start a business online to help with my medical bills and to make these important milestones exceptional! If anyone has any ideas I would love to hear about it.
     Our home is falling apart and the more Clint tries to fix things, 10 other problems show up. He is such a good man, and he devotes everything he has to us, his family. To top that off, his devotion to his job makes everyone want him to take care of their IT problems and there is just never enough of him to go around. He never fusses or complains, he just does it. His job puts so much stress on him that it is beginning to affect his health, and having one sick parent is bad enough. He is such a humble, loving, and giving man; and people take advantage of him far too often. He knows he is being taken advantage of, but he never lets the people who do this see that he knows full well what they are doing.
     He has been given great discernment when it comes to business, he just doesn't have the venture capital to take it to the next level, Through the years, every time he has said a gas station would be perfect in this spot, or a car wash would be great here; he has seen those who could afford to, put the exact business in the exact spot and it flourished. He has also seen certain businesses open and knew it was a bad idea and within the first 3 years those businesses failed. I know together with his innate and difficultly learned sense of business and marketing combined with my God given abilities and our drive for success we can make the Town of Sterlington into the City of Sterlington.

Gotten Behind

     I am sorry I have not been keeping up. Since Saturday I have been in so much pain even on top of all of my pain meds that I have basically been sleeping most all day and all night. Waking up to take medicine, and to help deal with minor things. As I am typing this I can feel my pain skyrocketing out of control, hopefully some IV fluids will help a little with that. Pray for my family because all they can do is sit back and watch.
     Pray that I will be feeling better by Friday, my baby girl, Hope, will be 18. She said a few days ago,"Ya know, I might need to start applying for colleges," and yesterday she got an email from Tulane saying she was accepted, and she got a letter from LA Tech saying she has been accepted and another one saying she has been awarded a $16,000.00 scholarship. As brilliant and amazing as Noah is, he still had to apply for college, Hope is being recruited. Baylor even called me on my cell phone. Texas A&M and Case Western are recruiting her too, along with every branch of the military. She said she has to hide from the military recruiters. I am so proud of all my children and constant see where God is blessing them abundantly. the last 2 times we went to Granny's she prayed a double blessing over Hope, and Granny has such a close relationship with God that she has some really powerful prayer!
     Okay I can't take it anymore I have to go take some meds and sleep some more, please pray for me.

Thanks So Much,

Betsy

God, will you please heal me!

     I know the Bible tells us that God will not give us anything beyond what we can bare, but I am right at the edge of that and I don't want to fall off that cliff. The repercussions from Saturday are worse pain today. I slept most of the day yesterday missing some extremely important calls. Now I am awakened at 3am from my severe pain. I know I cannot put another bite of food in my mouth for a while, so please pray for the strength from God to just say "No Thank You" to food. My body has been through so much throughout this illness and it is really catching up with me. I have so much I need to do this week, from teaching Elijah to getting ready for this Town of Sterlington Garage sale this Saturday. Anything we can earn will be so helpful, I get that everyone has their own financial issues, from people making no more than us to people making 3 times our salary due to improper budgeting. I am amazed what Clint can do with our income and how he can calm and put everyone he comes across at ease. The amount of work and quality of work he does is truly deserving of an increase in salary and I pray that he gets that, I also want to learn how to make income online during the hours I am coherent and not teaching Elijah or spending time with my family.
      I have to say a very special thank you to my sister-in-law, Kim. She is here every week, sometimes every day and if there is a mess she cleans it. She doesn't ask for anything in return, she is just here for me whenever I need her and whatever I need her for. She hasn't always made the best choices in life, but when it comes down to it she is here for our family and I don't know how we would do it without her! From the depths of my soul Thank You Kim, we love you so much and I pray that God heaps a double blessing on you because you have been such a blessing to us.

This is getting old

Before getting my sister-in-law, Kim's birthday dinner and cake ready, I had a really bad day. I am so used to being too sick to eat but when I take my nausea medication I feel a little better and realize I am starving. Now for most of you eating is a way of life, it's your nourishment, your energy, your socialization. For me eating is literally killing me. I have to rely upon TPN for my nourishment. I just did something really stupid last night I had a big soft pretzel and some cheese sticks. Something happened that never happened before, and if there was a half decent hospital around here I would have gone straight to the ER. I got so sick my stomach inverted. It hurt insanely bad. But i made it through the day and I think I have gotten back to the point, no food, no matter how good is worth my life. Thank God and my family I was able to get through the day and enjoy my family. I know I am going to be hurting for a while which will remind me not to put any food in my mouth. Right now I have to go take my meds so I will try to write again tomorrow.

It's been a while

I have been stuck in a holding pattern while my doctors and insurance decide what to do next. I had a really difficult month last month. No matter what i couldn't control my symptoms. Now I am back on an even keel for me anyway. I am waiting on my neurologist now, because insurance will not cover IVIG because even though I had a better quality of life, there was no change in my gastric emptying test. The next thing they are supposed to try is Solu Medrol but it has been months and still waiting.
     I am going to try to start another blog or maybe even a vlog because I cannot work. We have a senior in high school and I am homeschooling our 4th grader. Between the cost of regular family expenses and my medical expenses I have to figure out a way to make money from home. I cannot do a regular at home job because I never know what my body is going to decide to do, so I have to figure out how to make the internet work for me so please pray that I will find a meaningful way to contribute to our family's living expenses.
     Our house desperately needs repair and Clint is working as fast and hard as he can to repair and remodel, but something new always seems to break or pull attention from what needs to be done. Hope is about to turn 18 and I want to try to make her birthday special. She needs a whole lot this year, from a computer and a vehicle for college to simple things like bedding, towels, and the like.
     God has given Clint an amazing mind for business but without capital he cannot do any of it. He intends to remodel this house all by himself and I love the layout and all the little features he wants to do but at the end of the day there is just not enough time or money for him to build our sanctuary. He gives every ounce of himself to a job that should be paying him more because he goes above and beyond in every aspect of his life, but he needs desperately to have time and peace to recharge because I have to deal with being sick all the time, but he has to deal with me being sick, knowing there is nothing he can do for me and that he is going to have to deal with the ramification on the house and the family.
     I really need to be able to contribute, even if it is in some small way to get our family and our remodel back on track. i have been so sick for so long, I don't even remember what it means to feel good. It can get really discouraging for all of us, I truly believe god is going to heal me in His time, I just wish it was sooner rather than later. I will try to keep my blog updated as I am starting a prayer and a spiritual journal. Who knows, maybe I will even be able to get my book published.
     Back to the mountian of laundry and dishes, paperwork and phone calls that won't get done today.
Because I am going downhill fast and when I finally break down and take my medicine I will be no good to anyone.

Gastroparesis sucks

There is nothing good about gastroparesis. And when you are a foodie like me it really sucks. I love to eat but now if I eat I throw up for hours. That's not the only thing though. I love to cook and bake and come up with new recipes, I even have my own line of cookies. I love planning big events and not only making food that looks decadent but tastes even better. I miss hanging out with my family. I miss living my life while the years go by so fast. Elijah will be 10 in January and he still has complete faith God will heal me and so do I. I know its in His hands but I really hope it's sooner rather than later

My amazing children!

I am still here, still sick, still on total IV nutrition, and still being blessed! My Noah is planning for his upcoming wedding, he is also in biomedical engineering at Tech, works as a full time youth director, and has given several Sunday night sermons. His fiancee Krystian has been such a blessing in all of our lives. Hope, as a Junior in high school is on track to be Valedictorian, head of the FCS, Editor in Chief of their Journalism department, constantly comes up with new ways to introduce people to Christ. Just  like we prayed before she was born, she is so full of life, she cant bottle it up! Elijah is still being homeschooled, but he has this innate wisdom that no one can understand. The things he knows, things no one has taught him constantly blows our minds. Not only are our children brilliant, ,giving, loving, and beautiful from the inside out; they are also all so very funny. Laughter constantly fills our home. Clint is so funny that his boss wants to set up an evening for him to do stand up comedy.
God has truly blessed us! I know by His stripes I am healed, my body just hasn't caught on yet. I know He is blessing our family in everything we put our hands to. I also know He can bless you abundantly and I am praying that He will.

Still carrying the #faithofachild

I have always known, since before I understood the extent of my illness, that God would use me, that He would heal me in a way that could only be a miracle, and He would use me to be a voice for those who are sick and frustrated by no or wrong diagnoses or diagnoses with no hope. Here is an interesting fact, I once learned at a Proverbs 31 day that since there are 31 verses in Proverbs 31 that you can go to the verse of the day of your birth and that verse would have a strong significance in your life. Noah was a baby at the time and I did not understand why Proverbs 31:8 would have anything to do with me.
  

Proverbs 31:8New King James Version (NKJV)

8 Open your mouth for the speechless,
In the cause of all who are appointed to die.

You can see now the significance because I feel with all my heart that this is what God called me to do, years before I knew true illness, years before I knew the struggle of fighting for my life would include fighting tooth and nail for the care I needed. Before I knew there are countless people dying because they just don't know how to get the care they need. I have met many amazing people who lost their lives to the battle I face and through the years God has sustained me, not because I deserve any more than any other one person but because He has a purpose for me. Little did I know when I was selling my own cookie line, Heaven's To Betsy's Gourmet Cookies that the verse I put on every cookie or tub of cookie dough I sold would have such significance for my personal walk.

Matthew 4:4New King James Version (NKJV)

4 But He answered and said, “It is written, ‘Man shall not live by bread alone, but by every word that proceeds from the mouth of God.’”

For so long before I was able to get IV nutrition, I could not hold down any food or drink and God sustained me. Now that I am on IV nutrition God is still sustaining me. Little did I know when I chose that verse that I would not live by bread of any kind, food or drink, and He still is with me, always! He is this for you too, anyone who needs Him, call out to Him and He will guide you, heal you, sustain you, bless you, save you! 

One smart cookie

I gotta say I have been one smart cookie. I say that with total sarcasm. My man and baby have the flu so I am on Tamiflu but I failed to get my pain meds because they are on back order and I failed to call around to find it because I felt so bad. I know exactly the reason I should have. Then I realize I have one bottle of Zofran and 3 doses of Phenergan. This is going to be one heck of a weekend and I really hope I don't have to go to the ER. Could use the prayer and better sense. 

Snow day

The weather has been crazy here in Louisiana freezing rain and sleet to huge snowflakes but by Sunday it is supposed to be 70 and raining. Clint and Elijah are so sick with bronchitis, Hope is going to the dr tomorrow because of hip pain. 

I seem to be in a holding pattern with constant nausea and Migraine and I still throw up every single day. I try not to talk too much about how I feel because truly no one wants to hear all about it. When friends or family members get so sick with a stomach virus that they can't even think straight I am tempted to say I know just how they feel 24/7 but I do not because again, who really wants to hear that? I have learned to mask my pain and nausea to an extent but that doesn't mean it's not there. People tell me I look great or I don't look sick and I have no idea what to say to them. I can not wait until the day when God heals me and until then I will keep my head up and wait for The Lord. 

I long to be a voice for all those who are sick and the doctors either don't believe them or simply cannot properly diagnose them. It is so hard when you are fighting for your life and you have to fight for every ounce of care. I have been there and it is exhausting but if I didn't fight I would not still be here and I have known many sweet souls who didn't have the strength to fight for the care they needed and lost their lives from inadequate care. My heart breaks for those who are truly sick and ignored by doctors or put in a mental institution because of inadequacy. I pray for all the people who are sick and have trouble getting a diagnosis, and all the physicians out there to find the diagnosis and the med students to be trained to look harder to find the root of the problem. 

Am I waiting or am I in a freefall?

The entirety of this blog has been to count down the days until God heals me of an incurable disease, mixed in with tidbits of my life and family, and sometimes a little craziness. This is the 3rd night this week that I haven't been able to sleep at all. When I do sleep it is restles and full of vivid wild dreams. So may changes are happening this year. My sweet, brilliant Noah is getting married this summer and all I want to do is give Krystian the wedding of her dreams! Hope is probably going to a college science or psycology 2 to 3 week course at Tulane this summer. Senior year is right around the corner for her. Elijah is sailing through 3rd grade with flying colors. He loves to tell us how handome and smart and humble he is; that's my stinkerlicious for you!
I am just so ready to feel like myself again before I forget who that is. Either I am so sick I cannot function or I'm havinf crazy siide effects from my medicine that I can't decide if the side effects or the symptoms are worse. I miss laughing, dancing, baking, cooking, playing with my kids; Going on dates with my husband, dates with my kids, or having the best family outings. We can't even travel with the extra load of my TPN and all my meds, not to even mention that money for travel is non existant because it all goes to doctors and bills. I do have to say this, God has always provided for us. We have never had a lack of food, clothing, and essentials. God has been so good to us and I know He will see us through this as well.
Thank you for reading and praying for our family. I pray everyone who reads this is blessed abundantly and all of you needs are met by our Awesome God! I also pray that you will have true joy, true peace, and true love in your life!

Still sick, still believing with the #faithofachild

The IVIG treatments helped with my symptoms. I even had several days that I forgot I was sick, I felt so good. But the test results had no change so insurance is not going to approve any more treatments and I know I can't afford $20,000 a treatment. I do feel like this is just one more step to prove that man cannot do anything proof that my healing will be by God alone.  Until then I will wait. I have to say I am losing my patience. I do see so much more going on while I wait. I am having a blast helping with my sons upcoming wedding. Noah is doing awesome in biomedical engineering and planning his life with his new family. He is a youth pastor and making strides in making a huge difference in this area. It gives me so much hope and anticipation. God has brought back to the forefront of my mind all the ideas and plans He has given me and let me know they are going to be a reality. Expect to see big things God is doing through our family this year. Stick with me on here and I know you will see more than just one miracle!