So thankful for all the prayers!

Thank you each and everyone for all the prayers. Words can not begin to express how much each of them mean to my family & I. This is such a hard journey. We know we will get through it, with God beside us each step of the way. Some days are much harder than others.

Past few days I've had a constant headache, praying it will ease up & go away soon.. Unfortunately, I have headaches daily, I don't like any of them, but I really hate the ones that stay all day & night for days.. Those really stink!

We are continuing to try every possible way to get help, raise money so I can have the IPSS procedure & then surgery to remove this tumor that is wrecking havoc on my body & mind. Sometimes I can talk & you wouldn't know how bad it is affecting my mind, other days it is very obvious right away. I hate this symptom, and pray it is reversible with surgery. I don't know if it is or not. This is a hard thing for me, I like to talk :) Writing these posts are a challenge many days. Many times it takes several days for me to finally be able to publish the post. So if I post something at times that do not make sense just bear with me.

My mom called the nurse again today at the UAB, she is going to see if there is anything she can do to get me in for the IPSS procedure. Momma asked her is there a way to set it up on payments. The nurse is so nice, it's not her policy to want at least $10,000 to do the procedure. She nicely told my mom, "Hun, you have no idea the amount of money that is going to be involved in this journey, this is just the tip of the iceberg." But she nicely told my mom she was going to see what she can do to help. She told momma I desperately need to get in to see them & get started as soon as possible. My body can not keep going with the amount of damage this disease causes due to the severe high amounts of cortisol it causes in my body. My symptoms just keep getting worse. 

Please continue to pray! Thank you all, for each and every pray! We appreciate them so much!

About Me

Most of the people reading this blog probably know me. But as this blog is shared with others there will be some that do not know me personally. So I'm going to share a little about my family & I. First let me thank each of you for reading my blog, and praying for my family & I during this time. We love the Lord, and strive each day to live our lives according to His will. We know that whatever this journey brings, He will be there for us each step of the way.

My name is Tina Harden. I'm 40yrs old. I'm married to a wonderful man, Morris. I don't know how I would get through any of this without him & our daughter. We were blessed with one precious daughter, Katie. She is 13 yrs old. She gets me through each and every day. The good Lord knew just how much I needed that sweet girl. She makes each and every hard day, worth the struggles. She knows just what to do to bring a smile to my face. We are a home schooling family, we have home schooled Kaitlyn since the beginning. Our main goal is teaching her to live her life for God, to know His Word, and academics come after our main goal. If she succeeds at our main goal, she is a SUCCESS.

I am extremely close to my family. My mom has always been my best friend, she just now shares that spot with my husband & daughter :) We lost my dad at the beginning of this year to lung cancer :(After a terrible battle of the disease. So this year has been a very emotional year. I love my granny, I love hearing her tell me stories of when she was growing up, and when she met my grandpaw. We both usually end up laughing hysterically, she was(is) a mess. My grandpaw passed away from lung cancer in 2006. The holidays are always hard without him, he always loved them & got more excited than even the kids in the family. I have a wonderful family & love them all dearly. My brother, Kevin, & his wife, Hope, blessed me with a precious little niece, Grace. She is now 3yrs old, and she keeps us laughing. She is at that fun age. Well I can't sit and name my entire family, but I'll just say I love them.

I've always had a lot of health problems. In High School I would pass out in class at times. On one occasion they checked my blood pressure, & it was through the roof. So my mom was called & we headed to the ER. I was 16yrs old and I was put on medicine for high blood pressure. The doctors were did not understand why or how someone my age had such out of control high blood pressure. At this time I was not fat, I was at a normal weight. It was also discovered that I had an abnormally high heart rate & that my heart skips beats. More things that only confused the doctors. Several test were run, unfortunately just not the right test.

Well life went on, & as I got older I got more & more strange health problems. Doctors just didn't know & couldn't explain, why? So I would be given meds, & not learn anything about why. Over the years, my health has gotten worse & worse each year. I was told at 19yrs old that I should never get pregnant. The doctor actually said, "If you ever get pregnant, just go ahead and dig a 6ft hole in your backyard, because your blood pressure is so out of control, that is where you will be.." ??? WHAT?? Needless to say at 19yrs old, this news completely sent me on a loop. The one thing I knew beyond a shadow of a doubt was that I wanted to be a mom. This hit me like a ton of bricks. It also sent me into depression. I could not see or hear a baby without losing it completely. Over time with lots of prayers & tears, I still remained very sad, but learned to deal with it much better. Then when I got older my gynecologist told me I wouldn't be able to have a child due to a problem with my ovaries, I didn't know or understand at that time he was telling me about PCOS. I'm so thankful that our dear Lord had different plans. He blessed us with our precious daughter. I actually got pregnant with her in only a few months after we were married. So God showed He was the one in control. I can not begin to express how HAPPY I was when we found out I was pregnant. I felt like I was the happiest pregnant woman ever! Even though I was on bedrest most of my pregnancy, I had a constant smile on my face. Then the day she was born, I was completely over the moon with excitement. I thank the dear Lord each and every day, for my precious BLESSING!!

For years I have stayed sick so much, it seemed as if I could get within 10 ft of someone sick I would catch whatever they had. My immune system basically didn't seem to work. But we didn't know why I stayed sick so much. More health problems would arise to go along with my bad immune system & high blood pressure, Heart problems, severe menstrual problems, severe migraines, anxiety, depression,not being able to sleep, stomach problems, Polycystic Ovarian Syndrome(PCOS), lab test that would come back and point toward lupus, then lab test that were not conclusive, severe pain all over my body(muscle pain, joint pain, deep bone pain, high cholesterol, diabetes, reflux, thyroid levels up & down, a growth on my thyroid, thinning hair, increased hair growth on face, gaining weight, swollen face, the lovely "buffalo hump", kidney stones, started having problems with memory(which continues to get worse), cognitive problems (memory, speaking, forgetting words, mixing up words), acne, bruising easily, diabetes, have started having vision problems, dizziness, blacking out spells, & etc. The list seems to go on and on, problem is the doctors never put it all together. They only worked on each problem separately never looking at everything. 

I recently asked my doctor to check me for Cushing's I read something online & it was like reading something I could have wrote myself. So I told him, we started the journey of test, many, many test. Then he kept redoing test, because as he kept saying, "Cushing's is rare" & he said, "He didn't want to believe I really had Cushing's". But unfortunately, every test kept coming back the same.. BAD.. So he had to tell me that I definitely have Cushing's. Then we had to learn what the source was.. so more test. It was discovered that mine is being caused by a tumor in my brain on my pituitary. Not words you really want to hear. But I'm thankful for a diagnosis after all these years of health problems and not knowing why??? 

Cushing's is rare and causes so many health problems, if left undiagnosed or untreated it can be fatal.To learn more about this disease just click on the Cushing's tab at the top of my blog.

Now our problem is I don't have any insurance & these procedures & surgery are extremely high. We applied for financial help through the UAB, but we were denied. So now we are humbly trying to raise money to help with these medical cost. 

Getting thru the Hard Times!

Okay I've stated before that I want to be brutally honest in this blog.. So here goes.

 I've tried very hard to stay positive during this whole ordeal. It hasn't been easy at times. I keep reminding myself that God is there for us, & I know he will see us through all of this. I don't know His plan, I may not understand His plan, it isn't always for me to understand. I'm trying very hard each day to look to Him with complete faith. Praying each day for what is happening & what may come. I've done pretty well remaining positive for the most part. I spend a lot of time praying, & in His scriptures. I try hard to stay positive for my family, I smile, I make stupid jokes, trying to make them laugh & not worry. At times I have to admit trying to stay upbeat can be somewhat exhausting.

But I have to admit something, when I received that letter from the UAB stated I was denied for financial assistance so I could have the needed procedure & the much needed surgery. I wanted to completely breakdown. I held it together and prayed. My daughter was sitting here beside me, so I held it together.

Right now my family is gone to my mom's house. And here comes the brutally honest part.. I'm a complete mess at this moment. I'm having myself one more complete ugly cry moment. One of those can't stop crying times. I'm praying & I know God is listening. At the same time I'm sitting here completely breaking down. I have to admit I'm scared. I'm trying to keep those scared thoughts away, the what ifs... What if we can't get help? What if we can't raise the money for this surgery? What if?? What if?? And I'm scared... If it was just me,  I could say, if it's my time, take me.. But it's not just me.It's my daughter, My mom, my husband, all of my family... I have a precious 13 yr old daughter. Who I am with nearly 24/7, I love that child more than my own life. The thought of not getting to see her grow up, is a horrifying thought. We depend on each other so much. The thought of my mom, who is my very best friend having to go through all of this is awful. She has had more than her shared of bad things to happen in her life, now having to deal with all of this with me. My husband, who I love & thank God for each day, the thought of not getting this surgery, I just don't even want to think about. While thought of the surgery is scary, thought of no surgery seems even more scary. The words without treatment can be fatal, just keep running over & over in my head.. I'm praying, literally begging please dear Lord, get us through this!

So please, please, just pray with me.. Pray for my family! pray that God shows us what we need to do to make it through all of this..

No matter the storm, I refuse to sink..

We have been praying that I would be eligible for financial help through a grant or whatever at the UAB. Sadly,I received bad news, I was denied. Morris,called,and he was told the biggest reason of the denial is that we are not residents of Alabama.. Which has me ????? totally confused,since I was told to apply for the help and they were all completely aware that I lived in Mississippi. So it boggles my mind. So now we are praying for the Lord to guide us in what we now need to do. I'm trying to just continue to pray & not get too upset. I'll admit this is hard, at this very moment. I'm trying not to dwell on it,I know God will get us through all of this. I'm trying to figure out what can we do,then reminding myself.. Have faith God will get us through all of this!

Though I'm praying & trying really hard not to freak out,I have to also admit,I get scared a times. I have to have this procedure done before they surgeon does the surgery! Then I have to have the surgery. It's a little scary if I get to thinking too much,because I've read what can happen if it is left untreated. Let's just say the word FATAL,isn't a very pleasing thing to read (please don't share this info to my family,they don't read my blog) So I humbly ask for each of you to pray,Lots of PRAYERS! The IPSS procedure before the surgery will be around $10,000 (or more),that is not to even mention the surgery,surgeon, hospital stay that will come after this procedure. I've read that is over $100,000.. I do not have any insurance,and needless to say we do not have that kind of money,we really needed to get approved for the financial assistance at the UAB. The nurse had me to apply,due to I had to have that or sign saying I will pay the $10,000 before the procedure.. Which I don't have, it is leaving me sitting here praying & asking, So what they are basically saying is either pay at least $10,000 for the IPSS,then at least $100,000 to be able to get the brain tumor removed or WHAT???  They will not do anything???  It's like they are saying,"Well we are so sorry you have a brain tumor,Good Luck with that!?!?!? "When I read the words if left untreated can be FATAL!!  Needless to say that is not a comforting thought.. So please pray some extra prayers for my family & I during this latest storm! Please pray God shows us how to overcome this financial storm.  So I can get the treatment I need.

Hope you all had a Merry Christmas!

 Hope you all had a wonderful Christmas with your families. Hard to believe the New Year is just around the corner.. Where has this year gone, it seems like it has flew by this year.




We got up Christmas morning & took turns opening gifts. Kaitlyn usually wants us to open our gifts from her first, while we are wanting her to open her gifts. So we all took turns. Then we headed to Momma's. We all always gather together there on Christmas. Greatest part is all the family just being together. I love my family so much. I was able to make it over to my mom's for Christmas, got to feeling bad while I was there, but I was still glad to be there. I missed out on Thanksgiving at her house(that was a sad, first.. So sad, because I love being with my family)


Anyway, my precious daughter was so happy on Christmas, Molly (American Girl doll) is being retired from the American Girl collection, so that was what she wanted for Christmas. She didn't think we were able to get her. So she was so excited when she saw her. (Since the other gift she asked Santa for, was for One Direction to be under the tree & let's face it Santa & I both told her "Sorry that's just not gonna happen..LOL.. Well besides their new CD which was under there)I'm so proud of the precious, young lady she has become. Unlike so many, when she gets money, she saves for things. There have been a few times she has saved up for something big she wanted. But most of the time, she saves her money to buy gifts for others. Once again that is what she did this year. She used the money she had saved to buy Christmas gifts for me, her dad, my mom, and most of it on my precious 3yr old niece (her cousin) whom she loves so very much. I am always so proud of her. She is truly an amazing child.

She bought me a beautiful red(my favorite color) shirt, she bought her daddy a Polo Pull over shirt, she got my mom (her Ma-Maw) a Hello Kitty music jewelry box(my mom fixed up the cutest Hello Kitty room for the girls at her house (partly for the girls anyway ..LOL... Cutest room) and she got my niece this this huge Barbie Set that had a Barbie house, a Barbie, pool & all sorts of accessories and she also bought her one more barbie doll so she could have two to play with in the house.. See I told you I have an amazing daughter.. (just a little mommy brag in there, I just can't help it.. God truly blessed her father and I when he gave us that precious girl of ours)

Most of all we were all together! We are so Blessed! 

My daughter... I think she is pretty AWESOME!! / What does being a teen mean today??

 

I feel extremely BLESSED that God entrusted this amazing child to her father and I to raise. My most fervent prayer is that we always show and teach her to live for God, to always put him first and to look to him for guidance in everything we do each and every day.


I am extremely proud to call this precious girl, my DAUGHTER! 

Sadly, we live in a world today, where it is rare to hear a parent of a teen being able to offer praise for the decisions that child is making. I know throughout the years of my daughter growing up I honestly can not begin to tell you the number of times I've heard, "Oh, Well she may be good NOW, but just wait until she's a teen." It is truly unreal how many times various people have said this statement to me. It was as if they were saying, Well you just have no idea what you are in for when she hits those teen years. Like they expected, "My good girl" to somehow morph into someone I would no longer recognize. I always told them, "I really don't think that is going to happen". Many times I would get "that look" the one that was saying, "You poor naive momma, you have no idea!" or I was met with laughter from my statement. To most people "becoming a teen" seemed to be the same as your child turning in to some WILD unrecognizable creature. But no matter how many times I heard these things or how many people rolled their eyes at me or laughed when they simply believed that I was living in a fantasy world. I do not believe this is going to happen, it didn't happen with me. I didn't wake up one day and completely forget right from wrong, because I was a teenager. I didn't one day turn into a teen and become someone who could not stand their parents. It just didn't happen. I was always and continue to be extremely close to my mom. I always talked to her about everything. And I have raised my child to know she can come to me and talk to me about anything. I'm happy to say my sweet child has now been a teen for close to a year. She hasn't morphed into some wild unrecognizable creature! And I  continue to stand behind my statement, that I don't believe she is going to change just because she is now a "TEEN". I'm not blinded or crazy, I'm not saying she has never or will never do something wrong. She will make mistakes, just as I have made mistakes in my life, just as we all have done. None of us are sin free. I'm only saying she has been taught how she should live her life, and she strives to live her life in a way that is pleasing to God. She knows we love her, and God loves her. She knows I'm always here for her no matter what, I'll always be there to listen to her, to love her, to pray for her and to help guide her in the life God has planned for her.

What I can say about this BEAUTIFUL, sweet child is that, I am EXTREMELY proud of the CHRISTIAN young lady that she has become. She has such a tender heart. She LOVES God, doing things for others, and being with her FAMILY.She brightens each and every day of my life. God truly BLESSED me when he brought this amazing child into my life. I feel complete honor & joy being her mom. She truly is a BLESSING from God. I will always continue to pray for her daily. I pray what her father & I have taught her on how she is to live her life for GOD and, to always put God first and foremost in her life will always remain. No matter if she is a teen or not. If she does wrong will I blindly turn my eyes and say, "Oh well, she's a TEEN" Absolutely NOT!! Neither I, her father and especially God will not just overlook wrong because she is a teen. Once we reach the age of accountability we each have to answer for the choices we make. Being a teen does not give you a free pass to do wrong.

It seems like so many people today expect way to little of our teens, and young adults. Everywhere you turn, someone is saying, "Oh well, that's a teen for you!" I'm sorry, I simply do not believe just because someone is a "teen" that means you should overlook everything they do simply because, "Oh well they are a teenager" I don't care if you are a child, teen, a young adult or an adult. Once you are old enough to know right from wrong. You are responsible for every decision you make, and everything you choose to do. You can either CHOOSE to live your life the way God wants you to live, or you can choose to do exactly what you want to do and then live with the consequences of those choices. It is your choice. It is not a choice God will make for you. He gave each of us the freedom to live our life the way we choose. He gives us His word to guide us. We have the example of Christ, His son to follow. We all will make mistakes, we all will sin. Jesus is the only one to ever live on this earth free of sin. The Bible tells us, "We all sin and fall short of the glory of God," Romans 3:23. Just because we will fail and sin at times does not mean, we should give up, and not do everything in our power to live our lives in a way that is pleasing to God. It doesn't matter what age you are, God gave His only Son so that we could have eternal life thru Him. How do we find eternal life with God? We learn this from his word:

We need to follow God's Plan Of Salvation, we must:
 1.  Hear - to hear/study God's word
Romans 10:17, "So then faith comes form hearing, and hearing through the word of God."
John 20:31, "... these are written so that you may believe that Jesus is the Christ, the Son of God, and that by believing you may have life in His name."
2.  Believe - we must believe in God and Christ, His Son
Hebrews 11:6, "And without faith it is impossible to please Him, for whoever would draw near to God must believe that He exists and that He rewards those who seek Him."
Romans 1:16, "For I am not ashamed of the gospel, for it is the power of God for salvation to everyone who believes, to the Jew first and also to the Greek."
Mark 16:16, "Whoever believes and is baptized will be saved, but whoever does not believe will be condemned."

3.  Repent- turning away from sin and turning to God
Acts 17:30-31a, "The times of ignorance God overlooked, but now He commands ALL people everywhere to repent, because He has fixed a day on which He will judge the world in righteousness by a man whom He has appointed,..."
Luke 13:5, "No, I tell you; but unless you repent, you will all likewise perish."

4.  Confess -to make the great confession "I believe Jesus Christ is the Son of God."
Matthew 10:32-33, "So everyone who confesses me before men, I also will confess before my Father who is in Heaven, but whoever denies me before men, I also will deny before my Father who is in Heaven."
Romans 10:10, "For with the heart man believeth unto righteousness; and with the mouth confession is made unto salvation."

 5.  Be Baptized- to be completely immersed, as in a burial to your old sinful life & be raised up to a newness of life thru Christ
Acts 2:38, "And Peter said to them, 'Repent and be baptized every one of you in the name of Jesus Christ for the forgiveness of your sins, and you will receive the gift of the Holy Spirit."
Acts 22:16, "And now why do you wait? Arise and be baptized and wash away your sins, calling on the name of the Lord."
Romans 6:3-4 "Do you not know that all of us who have been baptized into Christ Jesus were baptized into His death? We were buried therefore with Him by baptism into death, in order that, just as Christ was raised from the dead by the glory of the Father, we too might walk in the newness of life."
Galatians 3:26-27, "for in Christ Jesus you are all sons of God, through faith. For as many of you as were baptized into Christ have put on Christ."
1 Peter 3:21, "Baptism, which corresponds to this, now saves you, not as a removal of dirt from the body but as an appeal to God for a good conscience through the resurrection of Jesus Christ."

 6.  Be Faithful Unto Death- to continue living your life in accordance to God's word each day.
Romans 3:22-26,  "Even the righteousness of God which is by faith of Jesus Christ unto all and upon all them that believe: for there is no difference: For all have sinned, and come short of the glory of God; Being justified freely by his grace through the redemption that is in Christ Jesus: Whom God hath set forth to be a propitiation through faith in his blood, to declare his righteousness for the remission of sins that are past, through the forbearance of God; To declare, I say, at this time his righteousness: that he might be just, and the justifier of him which believeth in Jesus."
1 John 1:6-10, "If we walk in the light, as He is in the light, we have fellowship with one another, and the blood of Jesus His Son cleanses us from all sin. If we say we have no sin, we deceive ourselves, and the truth is not in us. If we confess our sins, He is faithful and just to forgive us our sins and to cleanse us from all unrighteousness. If we say we have not sinned, we make Him a liar, and His word is not in us." 
Revelation 2:10, "Do not fear what  you are about to suffer. Behold, the devil is about to throw some of you into prison, that  you may be tested, and for ten days you will have tribulation. Be faithful unto death, and I will give you a crown of life."

God has offered each of us the precious give of eternal life.. If you are not a Christian I urge you to change that now. None of us are promised tomorrow. God desires for everyone to be with Him when this life is over. Even though that is what He wants, He will not force His will on anyone. He has given all the freedom of choice. We can either choose to follow His word or choose to ignore it. But the day will come when it will be too late. If we do not follow His word, we will be cast into hell. The time for choosing will be over. So I urge you to may that decision now, if you are a Christian and have fallen away. I urge you to repent and make things right with the Lord, for he is faithful and just to forgive. Just don't wait until it is too late. The day for choosing may come to an end before you take the time to make things right. So don't put it off!!

Hebrews 9:27 - And as it is appointed unto men once to die, but after this the judgment: 
Matthew 7:21-23 "Not every one that saith unto me, Lord, Lord, shall enter into the kingdom of heaven; but he that does the will of my Father which is in heaven. Many will say to me in that day, Lord, Lord, have we not prophesied in thy name? and in thy name have cast out devils? and in thy name done many wonderful works? And then will I profess unto them, I never knew you: depart from me, ye that work iniquity."
Matthew 24:36 - But of that day and hour knoweth no [man], no, not the angels of heaven, but my Father only.

Hurry up ..... & Wait!!

I'm sure many of you have been there before, you need an appt or results of some lab work. And you have to wait, wait, & wait some more. Of course, the funny thing is when you need something from them you seem to have to spend a lot of time waiting. But when they need paperwork, or payment they want you to hurry up.. So it seems to be a Hurry up ..& Wait game. At least that is what I seem to be in right now. A never ending loop of hurry up & wait.

I want to take a moment to thank so many of you for checking on me & asking if I have a date for my surgery yet.. Well unfortunately, I do not have an appointment, yet. Why??? You might ask, Well.. The simple answer is MONEY!! The nurse from UAB called last week. I had to fill out a lot of paperwork & send it in. Got that done, or at least I was under the impression we had it all done. Unfortunately, NOT!!

I have no insurance, and it seems since I have no insurance. I may have to wait a while. Hopefully not too long, since my symptoms seem to keep getting worse, & worse. Also I have to have another test at the UAB before my surgery can be scheduled. I will have to go to the vascular center at the UAB  to have a test called an IPSS. I've posted an article about it below that explains what they will be doing. 

Anyway back to my appt. Like I said first I have to have this test done. Well the nurse has now informed me that since I do not have any insurance I needed to apply for some financial help from the UAB for the test, either that or I had to sign a form stating I could & would pay for this test before it is done. When I was told this, I naively asked, "Well how much is the test?" She then tells me she couldn't tell me exactly but I needed to be prepared to pay  at least $10,000 for just this test.. After I started breathing again. I said, Oh! There is no way I can pay that before the test. Let's face it I just don't have $10,000 just laying around. So I had to apply for financial help from the UAB from a grant or something. So we had to fill out a lot of paperwork, & my dear husband had to get a lot of different things together to fax to them. So he got all of that accomplished. I called as the paper told us too, once we got everything faxed to them. Well then I was told, you will have to call back in about 3-5 business days to give us time to get everything in our system. Okay, so hurry up... & wait. Well I called back yesterday afternoon. At which time it seemed like they asked me everything they could possibly think of, which is fine except, ummm well I'm not the best person to ask questions now days. So she would ask me, I would have to apologize and turn around to ask my hubby. This continued  on & on, for what seemed like forever. Finally got done with a million questions.. To find out they now need even more paper work. Some of which we didn't have and had to call to get, Of course when Morris called, all he got was a computer. We needed to talk to a human so we could ask them to fax it to us. But obviously, humans do not get to work answering the phone anymore. So the computer told him it would be mailed to us in 5-10 working days. So therefore I have to wait around a week to get all our paperwork. Then when I finally get it, & we are able to fax everything to the UAB. After they receive it we then have to wait another 3-5 business days. To talk to them again. The woman on the phone told me when we talk next time. They might possibly have an answer to if I'm approved for the financial help or it could possible take 2-3 weeks to get an answer. 

So we are just doing lots of praying that we get approved. And lots of praying about the surgery. Thankfully if we are approved it will also help on the surgery. So we are sending up lots & lots of prayers. Because if this 1 test costs 10,000 I do not even want to imagine what the actually surgery cost, along with the cost of the doctors, hospital stay & etc. Please pray with us. The nurse I talked to that told me to apply for help was really nice, she was just letting me know what had to be done according to their policy. She also told me to stress to the financial dept.. how important it was for them to hurry this along. Which I tried telling them, but they didn't seem to get the hint that it needs to be rushed along. And some of the paperwork they have to have just seems ridiculous. But we have to do what we have to do. 

I just wanted to let you all know what is going on and why sadly I do not have an appt. yet. I really hope things can get moved along. Thank you all for your continued prayers for my family & I. <3 font="">

This is the info about the test I have to have done before they will do the surgery.

Catheter placement during IPSS testing

This test is performed by a specialist called an interventional neuroradiologist and should be done at a pituitary center where the procedure is routinely performed. When done by an experienced neuroradiologist, this test is safe and well tolerated You will be awake during the procedure, but sedatives are used so it's likely that you will have little memory of the procedure itself Two small tubes (called catheters) will be inserted into your femoral vein (the vein in the inner thigh in the groin region) and passed up your veins to your head The catheter tips will be placed near the petrosal sinuses so that one is on the right side and the other on the left side of the pituitary gland Another catheter (called the periphery catheter) will then be inserted in a different area of your body (usually the forearm), away from the pituitary* Baseline (the first round of samples with which later samples will be compared) blood samples are then drawn to measure ACTH levels from all 3 catheters (right side of the pituitary, left side of the pituitary, and periphery) Next corticotropin-releasing hormone (CRH) will be injected into your bloodstream to try and stimulate the tumor to produce more ACTH Additional blood samples will then be drawn from the three catheters ("right," "left," and "periphery") at different time points. In the chart to the left you will see that these time points are 2 minutes, 5 minutes, and 10 minutes after the CRH injection† Your test results will be compared to determine where ACTH levels are highest First the "right" or "left" catheter ACTH levels will be compared with the "periphery" catheter ACTH levels. If the "right" or "left" catheter have higher ACTH levels, this indicates that there is a tumor on the pituitary gland, which is producing the excess ACTH (Cushing's disease) Next, the "right" catheter ACTH levels are compared with the "left" catheter ACTH levels. Higher levels indicate that the tumor is most likely on that side of the pituitary -Tina

I can't believe Christmas is only 11 days away! / Learning to be a more submissive wife

It is CRAZY that Christmas is almost here.. Wow! It doesn't seem like this year should already be nearly over.

This year I've had to keep my Christmas ordering in check with my dear hubby, due to my lack of memory! Last year I ordered Kaitlyn's presents online. Which was great, EXCEPT the fact I kept forgetting I had ordered Kaitlyn's presents.. LOL Great for Kaitlyn, not so great for the pocketbook. I would get online, see something & think, "Oh No! What are we going to get Kaitlyn for Christmas?" Then I'd look around send in an order.. Well that is all well and good. Except it happened over & over. The packages would come, I'd hide them. Forget all about them.. And repeat this process over, & over & over.. I'm guessing you are seeing the trend, Out of Sight out of Mind.. Well "Out of Mind" for me literally.. Needless to say come Christmas Eve night, when my dear hubby started pulling out presents, and kept finding, more presents, & more presents.. Bless him he was looking at me like, "What in the world have you done.." Of course, my expression was like "WOW! Where did all those presents come from." He would ask, "What all did you order?" ummm..... Blank stare from me.. It was like Christmas morning for me too... We were opening boxes of hidden stuff to wrap, while I'm saying over & over, "Ohhh, What's that??" My poor sweet husband, of course had no earthly idea, but neither did I. Oh, I really liked one shirt, seeing as if I obviously ordered three of  the  same exact shirt, on three different occasions. Yeah! It sure is a good thing that dear man loves me..Since he just kept shaking his head, all he really said was, "Next year, please no ordering without telling me before you order something, so I can tell you if you have already ordered it or that you've already ordered enough." So I've been a very good girl this year.. :) No ordering without talking to the hubs first.. I remember because he reminds me ;) 

Also this disease has taught me a few things. Especially in the past few years. Since I have so many problems, the one good thing that has happened is I've learned a lot about being a more submissive wife.. I honestly would not be able to survive without my wonderful husband. This illness is not mine alone, if effects the entire family. And they get me through each and everyday. I am blessed beyond measure. I thank God everyday for my wonderful family. I love them so much!

One thing it has taught me:

I'll be the first to admit, I need help sometimes with being a submissive wife. It isn't something that comes easy for me. I grew up seeing my mom waiting on my dad, sometimes in my eyes to an extreme.. You know, I was a girl growing up in the time of "Women can do anything a man can do, only better" So instead of watching my mom,& at that time striving to grow up to be a submissive wife..I was guilty of saying, "When I get married, I'm not gonna do this or I'm not gonna do  that.. blah, blah, blah.." No matter that I studied my Bible, and saw it said,"...wives, be in subjection to your own husband"- 1 Peter 3:1 In my eyes growing up, I had a tendency to be like so many & chose to ignore that verse, to put my blinders on... to pass over that verse and others like it.. I was young, I was a strong woman. I didn't need a man telling me what to do.. I didn't need to be in subjection to my husband, what century do we live in, Right? WRONG!!!!

I'm proud to say as I've gotten older, wiser, studied my Bible more, & finally became aware that "what I thought" didn't/doesn't matter. It's what God's Word says that matters. It doesn't matter what "century" we are living in,God's word is the same yesterday, today & tomorrow. I started learning slowly little by little. I will not lie, it didn't come easy. Honestly, it was a struggle for me, I've always liked being "in control". I've had a lot of bad things that have happened in my life (which many of you have also, we all have our own demons).. I've been hurt many times & I've seen others I love be hurt. I grew up wanting "control of my life". I was determined I knew what was best. I was not going to get hurt.. I was in "CONTROL"

Trust me, when I say, There were times I had "control" and guess what??? While I thought I was in control, what did I learn.. I wasn't in control.. I did however make some bad choices, those bad choices lead to me getting hurt, that thing I was going to keep from happening, remember?.. So while I'm trying to "control" MY life, so I would not get hurt.. It backfired... Don't get me wrong, I was not a wild child, teen or young adult by any stretch of the imagination.. I was actually considered quite boring.. I was the girl who didn't get invited to a lot of things, due to the fact it was well known that I didn't participate in the things others participated in during those years. But regardless, I still made bad choices, and those choices led to a lot of heartbreak. While I should have been leaving all the "CONTROL" with God. Since he didn't need my help at all. Instead while trying to be the one in control, all I did was mess things up.Thankfully,  God got me thru all the mess I created. All the heartache, and along the way I found my prince charming. Now I'm not saying it's all been rosy & easy. Like everyone we've had our struggles through the years. But God has been there for us through it all. Putting Him first is the main thing. Now is that to say, since I had a great husband that I automatically decided to be a submissive wife... Ummm, NO! I still wanted to have "control". I did however little by little get better.

Over the past few years,with dealing with all my health problems, God has showed me & allowed me to come around to knowing how to become a submissive wife. I'll tell you it was HARD for me, to lose "my" control. I like having "CONTROL", I like it a lot. I had always done all the bill paying, keeping track of the finances & etc. Well needless to say when your mind starts getting bad, starts wandering, starts forgetting to write things down or to send stuff in.. Well you get the picture it becomes obvious & beyond any of "my control" that all of it had to change. I wasn't thrilled about this, especially at first.  I have to admit now, I survived, the roof did not cave in & I found out that I'm actually quite happy not  to be the one having to keep up with it all.. I was also always the one who took care of any type of business, that also had to stop.Since my mind doesn't always work right, & my mouth & mind do not always work well together.  I also tried to make a lot of the decisions around here. Guess what?  I learned, albeit the hard way, that my husband is quite able to do all of this himself, he did not/ does not need me to tell him "how to" do things.. Yes, I've admitted it before I can struggle a little bit with pride & wanting control.

Through all of this, as hard as this disease is to deal with, I can find some positives. It has taught me how to be a more submissive wife, like I should have always been. It has taught me to consult with my husband when any decisions need to be made. It has taught me that my husband is the true head of this household, not me. Of course, I have a say, but he has the final decision. So while this disease has wrecked my health for years, & we are just now finding out the cause of all my health problems &  mind/memory problems. It has taught me a thing or two. I've always wanted to do God's will (sometimes I may have wanted to pick & choose when it came to those submissive wife verses) I have to say thru it all, it has caused me to study my Bible, even more than I did before. I spend a lot of time in prayer each day.

I have learned that worrying changes nothing. I nust admit, I use to be a very big worrier.. Since I like control & all, you know,.. I could worry, with the best of worriers.  But guess what I discovered? Worrying changes NOTHING!! God does not need my help, He does not need to explain to me why? Things happen for a reason, do I know those reasons, NO! Do I still wonder sometimes? Well YES, of course! I am only human. I am, however, learning how to let go of my worrying.. Since my worrying does nothing, I repeat nothing to change anything. Only prayer & God can do that.. He is in control, I am not.. Of course I have times I catch myself while reading about the procedures I'm about to face, of going down that path of worrying. But I'm learning to stop what I'm doing & pray, to ask God to get me through what ever we are facing. I have times when I get scared,  I'm learning to pray & remember whatever happens God is there for me and my family. He has us in his care. We just have to trust Him & rely on Him. He will get us through this.

So even though I've struggled through the years. I have always tried to teach my daughter that God has a plan for her life, it is her job to pray, to study His Word each day, & to be watchful for His plan. To not get in a hurry & try to "help Him" by trying to speed up the plan. God is in control, only He can see the end results of the choices we make. I try to teach her & pray for her, that every decision she makes in life, even now, will affect her life. Each and every choice she makes will have a consequence. Whether it  is a good or bad consequence. Every action has a reaction. I've prayed from the time my daughter was born & will continue to pray for her life, her future, & the man she will one day marry. I pray with her, I study with her & I pray to God on my own all the time for her, her future, her future spouse & future children. I pray she will not get sidetracked from God's plan. I pray she will wait & be watchful for the Godly man HE has in store for her. I pray, unlike me, she doesn't have as hard of a time accepting the role of being a submissive wife. I pray she ALWAYS puts GOD first in her life & in every decision she makes along the way. I love her so much so I pray! That is the best gift I believe I can give her, praying for her, & teaching her God's word.

 I've tried to look over this & correct my blunders.. Just keep in mind this takes me a while & a lot of editing, but I still may have some mistakes..

Missing my Grandpa,...Falling is so not fun & Oh no, I can't see!!!

I've been wanting to write this post, but my eyes & mind have not been co-operating so well tonight. Maybe I can get it done. First of all the nurse from the UAB called this morning. I had to print out a lot of papers to fill out & gather a lot of stuff up to send them before they can set up my appt. Hopefully we will get an appt time sometime next week. One problem is I have No insurance & very low funds.. So trying to get an appt. for a very expensive test & even more expensive surgery with no insurance or money isn't the easiest thing. but we are praying!! The nurse said she should be able to get me in after the receive all the paperwork & get things together. So please Pray with us.. I need all of this soon. My symptoms are getting worse & worse. Thank you all for your prayers.

Yesterday (well actually Tuesday, since I see it's now Thursday. I'm still on Wed. since I'm still up) So anyway...

Tuesday would have been my Grandpa's 91st birthday. How do I even begin to say what my grandpa meant to me. My grandpa is the first man I ever loved & he on a very short list of men that I always knew beyond a shadow of a doubt loved me no matter what. He didn't care what I said, how I looked, what I was thinking, etc... He loved me unconditionally & I  him. My Grandpa as far as I'm concerned was great, did he have faults, yes! But to me he was GREAT!! I miss him each & everyday!!

He could light up a room with his hearty laugh, he never called me Tina, I was "Tink, Sissy, or Tiner".. My precious daughter, Kaitlyn was only five when my grandfather passed away. To him she wasn't Kaitlyn, she was "Sweet Baby Girl", & that is exactly what she is, our sweet baby girl. Actually He did not call anyone in our family by their names. We all had special names he called each of us..

Right now during the holidays is when I miss him even more. There has not been a holiday or birthday that has been the same since he passed away in 2005. My grandpa made the holidays. He was so excited during birthdays, Christmas & etc. He actually got more excited than the kids.. I loved giving him gifts, he was so much like a kid, he would light up & laugh as he was opening it (regardless of what it was, he was excited) Just thinking about it I can hear his laugh.. I'll be the first to admit, holidays will NEVER be the same without him. But one day I pray to hear that laugh again.

So anyway, Tuesday on his birthday my mom went to get my Granny to take her to lunch. My Granny wanted me to go, I had not been able to get out of the house due to so many problems with this dreaded disease in over a week. I prayed & prayed to be able to get the strength to go with them. I started getting ready a little at a time, it takes a long time because my head usually starts hurting so bad & I get so dizzy that usually now I have to take breaks & sit or lay down it gets so bad before I can continue to get ready. But I finally was able to get dressed & sit awhile & call momma to come pick me up. So I got to go with two ladies I love dearly, My mom & my Granny for lunch. Since Granny loves Cracker Barrel that is where we went, I got the kids veg. plate, I got the dumplings & they were good.

Afterwards, my mom needed to run to Hobby Lobby (my favorite store) to pick up a couple of cake pans. I went in & was looking at the Christmas Ornaments ( I love Christmas Ornaments & try to get a new special one each year) Someone usually stays with me now anytime we are out because I never know when a blackout spell, severe migraine, dizziness, or loss of vision will hit.. Well of course, I thought I would be "OKAY" while looking at the ornaments & told her she could go on and get what she needed I was going to stay looking at them.. Well I was WRONG!! Unfortunately I bent down to look at some ornaments on the bottom row. And got really dizzy & shaking all over. When I tried to get up, WELLLLL let's just say up is not the position I went.. I fell in the concrete floor right there in the middle of the isle. And was shaking so bad I could not get up. When I tried I ended back up in the floor. I was completely horrified.. I wanted to run & hide (but since I couldn't get up that wasn't possible..) Some nice lady came over to help me. I couldn't bring myself to even look at her. I told her I'd be okay in a little bit, but well that little bit wasn't helping.. I had ornaments in my hand, she offered to help me up, but of course that evil little pride told her I'd get it in a moment.. Well after severaly "moments" I finally held on to the metal display & shakily pulled myself out of the floor. I told her Thank you without ever looking her in the face, all while trying to tell her I was so embarrassed & was having a lot of health problems.. What do you say to someone that is trying to help you out of the floor, while trying not to look up at all the people in a store wondering "Why in the world this lady is laid out in the floor", or "What in the world has she got a hold of to be so clumzy & shaky" I had all kind of things going thru my head of what everyone was thinking.. And all I knew was I wanted to thank her & I wanted to HIDE. All while still feeling like I could hit the floor again at any moment, thank the Lord for buggies to hold on to. Then of course when my mom & Granny got back over there (while I'm trying to hide out) she finds out & is upset she left me.. Bless her she's a tiny little thing, I don't know what she thinks she was going to do? If she tried to catch me I'm pretty sure I'd smush her.. :) Then we both would have been on the floor. (I have to make stupid jokes at myself to get thru all of this stuff) So bear with me.. So then we finally flee, ooops I mean leave Hobby Lobby. All while praying it wasn't caught on camera for employees to send in to "Funniest Home, well store, Videos" So if you see me on the show let me know only if I win a lot of money..

Now on to today, (well Wednesday). Felt really bad most of the day. I usually do anytime I try to really accomplish anything now. It takes every bit of energy I can muster & leaves me completely drained & usually in a lot of pain the next day & several days later.. But I was trying once again to muster the strength to go to Bible Class (I hate missing, but unfortunately I'm not able to go a lot here lately since things are getting worse & worse) But I made it.. Yeah, victory.. Unfortunately while I made it there, once there after a little while I started not doing well. I couldn't answer any questions, becasue my vision went for a while, then everything just ran togehter. ( oh no I'm sitting here trying to tyoe & its starting to mess up some now, since I know where the keys are maybe I can make it thru a little more.) Bear with me.. Anyway vision going & I streted dying burning up. Then I was dizzy, So I mainly sat there with my eyes closed listening. But at least I was able to be there and listen. After class, I had to have help getting to my seat for the devotion & song service. And then I had to have help getting to the car.. I get in so much pain & so dizzy & shakey it is either get help or end up ,on the ground.. Neither of which I enjoy, but I have to swallow my pride & have help..Well I've got to stop because the eyes are gettig worse and soon I won't be able to see to finish to post.. So good night. I'll try to attempt a more upbeat post tomorrow or hopefully soon..

-Tina

Cushing's, I couldn't have said it any better...

I came across this letter written & posted on a website I was reading about Cushing's.. I read it & thought I couldn't have written a letter any better.. So please take a moment to read this letter. It describes the seriousness & the struggles of Cushing's Disease:  The highlighted areas are added by me :)

Dear friends and family:
I am writing this letter to share with you some basic facts about Cushing’s Disease/Syndrome & the recovery process so that you will have sufficient information to form realistic expectations about me & my ability to engage in certain activities in light of this disease and its aftermath. As you know, Cushing’s is a rarely diagnosed endocrine disorder characterized by hypercortisolism. Cortisol is a hormone produced by the adrenal glands & is vital to regulate the body’s cardivoascular functions & metabolism, to boost the immune system & to fight inflammation. But its most important job is to help the body to respond to stress.The adrenal glands release cortisol in response to stress, so atheletes, women experiencing pregnancy, & those suffering from alcoholism, panic disorders & malnutrition naturally have higher-than-normal levels of cortisol. People with Cushing’s Syndrome live life with too much cortisol for their bodies as a result of a hormone-secreting tumor. Mine is located in the pituitary gland. Endogenous hypercortisolism leaves the body in a constant state of “fight or flight,” which ravages the body & tears down the body’s major systems including cardivascular, musculo-skeletal, endocrine, etc. Symptoms vary, but the most common symptoms include rapid, unexplained weight gain in the upper body with increased fat around the neck & face (“moon facies”); buffalo hump; facial flushing/plethora; muscle wasting in the arms & legs; purplish striae (stretch marks) on the abdomen, thighs, buttocks, arms & breasts; poor wound healing & bruising; severe fatigue; depression, anxiety disorders & emotional lability; cognitive difficulties; sleep disorders due to abnormally high nighttime cortisol production; high blood pressure & high blood sugar/diabetes; edema; vision problems; premature osteoperosis; &, in women, signs of hyperandrogenism such as menstrual irregularities, infertility, hirsutism, male-patterned balding & steroid-induced acne.  Imagine that, you became unrecognizable to those around you & even to yourself. You look in the mirror, but the person starting back at you is a stranger. You endure the stares & the looks of pity from those who knew you before Cushing's, fully aware that they believe you have "let yourself go" or otherwise "allowed" this to happen to your body. Nothing you can say or do will persuade them otherwise, so at some point, you stop trying & resolve to live your life in a stranger's body. You feel increasingly sick, but when you explain your array of symptoms to your doctor(s),  you are dismissed as a depressed hypochondriac who needs to diet & exercise more. Worse, your family members think the same thing-and are oftern quick to tell you how you need to "change your lifestyle". "You just need to get out more", or "You really need to get back to exercising" or "It's just your nerves" or "You need to perk up & do this or that", "you just need to change what you are eating"and many, many more well meaning statements...  to overcome the effects of what you finally discover, once properly diagnosed, is a serious & rare disease. If only it were so simple! No one would choose to have Cushing's. Those of us who have it would not wish it even on our worst enemy.
Most people with Cushing’s long for the ability to do simple things, like walk a flight of stairs without having to sit for half an hour afterwards, or vacuum the house or even unload a dishwasher, take a shower without feeling like you are going to hit the floor, much less then trying to get ready to go somewhere. One of the worst parts about this disease is the crushing fatigue & muscle wasting/weakness, which accompanies hypercortisolism. Not only do we become socially isolated because of the effects of an endocrine tumor, which drastically alters our appearance, but we no longer feel like ourselves with regard to energy. We would love to take a long bike ride, run three miles or go shopping like we used to — activities, which we took for granted before the disease struck. Those activities are sadly impossible at times for those with advanced stages of the disease.
Sometimes, as with any serious illness, performing even basic tasks of daily care such as showering and dressing can exhaust the limited reserves of energy available to a Cushing’s patient.Amen!!, So many times I work so hard to try to get up to go to church that by the time I simply take a shower or bath, I'm shaking so bad, my head is hurting so bad, I'm so dizzy that I have to lay down before passing out. Then end up having to stay home unable to go. Which is greatly upsetting.
How do we explain to you what it’s like to watch our lives slip away? What response is sufficient to express the grief & frustration over losing so much of ourselves? It is often difficult to find the strength to explain how your well-meaning words of prompting & encouragement (to diet or exercise) only serve to leave us more isolated and feeling alone. Though we wouldn’t want it, we wish our disease were as well-understood as cancer so that those who love us would have a frame of reference for what we go through. With Cushing’s, there is such limited public awareness that we are left to describe the effects of the disease from a limited understanding from those who love us most, which is disheartening.The most frustrating misconception about this disease is that we somehow are “doing this to ourselves,” or delaying recovery because we need to continue steroid replacement or lack the energy to excercise often, which is sadly false. Trust me that we would love to have that much control over such a terrible disease.It would be great to have any kind of control over this disease.Fortunately, there is a good likelihood of remission from Cushing’s in the hands of a skilled pituitary surgeon. Unfortunately, the long-term remission rate is only 56%, meaning that 44% of people with Cushing’s will require a second (sometimes third) pituitary surgery, radiation or bilateraly adrenalectomy to resolve the hypercortisolism. Without successful treatment, Cushing’s leads to death. Even with successful treatment, I will have to be monitored for possible recurrence for the rest of my life. After surgery or other treatment, the recovery period can last months or even years. Because the tumor takes over control of the body’s production of cortisol, the adrenal glands, which had lain dormant prior to surgery, require time to start functioning properly again.Until this happens, we must take synthetic steroids or else risk adrenal insufficiency or adrenal crisis, which can be quickly life-threatening. Careful monitoring of our cortisol levels is critical during the weaning period. It is a rare but sad fact that some people’s adrenal glands never return to normal, & those people must continue to take hydrocortisone or prednisone — sometimes for life — simply in order for the body to perform correctly its basic systemic functions. Oh, how I pray, & pray the surgery works & does not reoccur. The physical recovery from surgery can be quick, but the withdrawal from hydrocortisone can be a lengthy & extremely painful process. As I described above, Cushing’s causes a tearing-down of muscles & bone. While there is an over-abundance of cortisol in our bodies (as a result of the tumor), we often can’t feel the effects of the muscle-wasting & bone deterioration because of the anti-inflammatory action of cortisol. I've had it so long, I already have severe joint, muscle & bone pain. Upon weaning, however, these become painfully (literally!) evident. The physical pain experienced while weaning from cortisol has been described as worse than weaning from heroin. When cortisol levels are low, one experiences the symptoms akin to a really bad flu, including severe fatigue (”like a wet cement blanket laid on top of me”); weakness & exhaustion; nausea; headache; vomiting; mental confusion. It is imperative for people who are on replacement steroids after Cushing’s surgery to carry extra Cortef (or injectable Solu-Cortef) with them at all times in addition to wearing a medic alert bracelet so that medical professionals will be alerted to the possiblity of adrenal insufficiency in the event of an adrenal crisis. People who have struggled with Cushing’s Syndrome all hope to return to “normal” at some point. Though none of us want to have Cushing’s, it is often a relief finally to have a correct diagnosis and treatment plan. For many, there is a gradual resolution of many Cushing’s symptoms within a few years of surgery or other successful treatment, & a good quality of life can be achieved.It isn't good to know there is a tumor in your brain, but at the same time I'm so thankful to have a real diagnosis & to be able to tell people it is a real disease & you are not CRAZY!!
But regrettably, this is not possible in every case. Depending on the severity of the disease and the length of time before diagnosis and treatment, the prognosis can be poor & lead to shortened life expectancy & diminished quality of life. This is not a choice or something we can control, but it is the reality for some people who have suffered the consequences of long-term hypercortisolism.We now know, due to my years & years of severe systems that this disease has already caused my body many severe health problems. So of which will be unable to reverse due to the long-term hypercortisolism. The one thing I find myself saying, at times, is "If only the doctors would have found this years & years ago when I started having severe health problems. I've been having severe problems since my teen years. But then I have to calm myself , take some deep breaths and pray. And simply take the time to be thankful that we now have a diagnosis. It's a struggle at times, but my life is  a journey, that even though I can't see the end result. I know that God sees the whole picture, while I only see the brief here and now.
The best support you can give someone who is suffering from Cushing’s or its aftermath is to BELIEVE them and to understand that they are not manufacturing their illness or prolonging recovery. Ask them what they are able (& not able) to do, & then be prepared to help them in ways that matter — whether that be to bring them a meal or help them to run errands, pick up prescriptions from the pharmacy or clean their house. Because it’s these little everyday tasks, which can fall by the wayside when someone has (or has had) Cushing’s, & these are the things we miss the most: doing for ourselves. Ask us questions about the disease, & then actively listen to what we say. We know you don’t know much about Cushing’s — even our doctors sometimes lack information about this rare disease. But know we appreciate the interest & will tell you everything you want to know, because those of us who have it necessarily become experts in it just in order to survive.
Thank you for caring about me & for hearing what I am saying in this letter. I know you love me & are concerned about me, & I appreciate that so much. Thank you also for taking the time to read this letter. I look forward to discussing further any questions you might have. In the meantime, I am attaching a brief article written by a woman who recently was diagnosed with Cushing’s. I hope hearing another person’s experiences will help you to understand what I’m going through so that when we talk, we will be coming from a similar starting place.

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This letter is for patients to provide to their family & friends in hopes of providing a better understanding Cushing's & it's many aspects.
A person with Cushing's may feel better at times then at other times. It's common for a Cushing's patient to have burst of energy & then all of a sudden they become lethargic & don't feel like moving a muscle. There are many symptoms that are associated with Cushing's. They include weight gain, fatigue, muscle weakness, shortness of breath, feeling achy all over, headaches, blurred vision, mood swings, high blood pressure, stretch marks (straie), buffalo hump, diabetes, edema & the list goes on. Hormones affect every area of the body. It is important to note that not all patients have every symptom. Even some hallmark symptoms, such as straie or the "buffalo hump", may not be noticable on every patient. Not everyone who has Cushing's will experience the same symptoms, treatment, or recovery. Because not all "Cushies" have these symptoms, it makes diagnosis even more difficult.
Cushing's can cause the physical appearance change due to weight gain, hair loss, rosacea, acne, etc. This can be very disturbing when looking in the mirror. Changes in appearance can often cause the Cushing's patient to withdraw from family & friends making it a very lonely illness. Patients often feel alone or withdrawn because few others understand.Cushing's can affect affect anyone of any age although it is more commen in women. Cushing's patients need to be able to take one day at time & learn to listen to their bodies. There will most likely be times when naps are needed during the day & often times may not be able to sleep at night due to surges of cortisol. Your Cushie doesn't expect you to understand Cushing's Syndrome completely. They do need you to be there for them & try to understand to the best of your ability what they feel and not give up on them. Often a Cushing's patient may be moody & say things that they don't mean. If this should happen with your Cushie try not to take it personally & know that it's most likely caused by the elevated cortisol & disturbances in other hormone levels caused by the Cushing's & not from the heart or true feelings of your Cushie.
It can be very depressing & frustrating having so many limitations & experience things in life being taken from you. Cushing's patients are very sick, not lazy, not hypochondriacs or even the newer term "Cyberchondriacs". If a Cushing's patient says they don't feel like doing something or they express how bad they feel let them know that you believe them. One of the most frustrating things to someone who is sick is to have those you love not believe you or support you. Telling a Cushie to think positive thoughts will not make him/her well, will just be upsetting & aggravating.
Testing procedures can be lengthy & this can become frustrating for the patient & family. Often, it takes a while for results to come back & this can be stressful. Don't look to far ahead just take one day at a time & deal with the situation that is at hand at the present time. After a diagnosis is made then it's time for treatment. Surgery is usually the best treatment option for Cushing's that is caused by tumors. Don't be surprised if the surgeon's facility wants to run even more tests or redo some of those that have already been done. Your Cushie may have to travel a ways to find a surgeon who is trained in these delicate surgeries & who has performed many of them. Once the diagnosis has been made & treatment has finished then it's time for the recovery process. Not all patients who have surgery are cured & they have to make a choice along with the advice of their doctor as to what their next treatment option will be.The recovery from the surgery itself is similar to any other surgery & will take a while to recover. The recovery process obtained from getting a cure from Cushing's is quiet different from other surgeries. A Cushing's patients body has been exposed to excess cortisol, usually for quite a long time, & has become accustomed it. When the tumor is removed that has been responsible for the excessive cortisol & the body is no longer getting it this causes the body to have withdrawal symptoms. Withdrawal can be very hard causing an array of symptoms muscle aches, weakness, bone and joint pain, emotional disturbances and severe withdrawal symptoms such as vomiting, etc. Thank you for reading this & we hope it will help you to understand a little more about Cushing's & the dibilating affect it can have on a person. Thank you for being there & supporting your Cushie during this time in their life. We realize that when a family member has Cushing's it not only affects the individual but other family members & those around them as well. Showing your love & support will encourage a speedy recovery for your Cushie.Thank you all for your love & support. This has not been an easy journey & it is one that is only really getting started in some ways..

Who Am I... I am Yours...

Who am I? 

I love this song, when things are hard, when I'm having a rough day. I love to listen to this song, I love singing this song. It is truly beautiful.. Just read the lyrics. They are so true. I really love the part that says, "I am a flower quickly fading, Here today and gone tomorrow. A wave tossed in the ocean. A vapor in the wind. Still You hear me when I'm calling. Lord, You catch me when I'm falling. And You've told me who I am. I AM YOURS!!"  

How wonderful it is to know you belong to God. No matter what you are going thru, no matter what you are facing. Knowing God is right there with you, every step of the way. Knowing that you are never truly alone, that you are His child. That you have obeyed the Gospel, that you are a Christian, a child of God. There is no greater feeling. Knowing God is there with you thru the good times, the bad times, the happy times & the sad times.He will never leave you. There are times when you will fail Him, times you will make bad choices, times you will let him down, times you will break the heart of our Heavenly Father. But thru it all He will not leave you, He will be patiently waiting for you to come back to Him. He will never fail you. 

This is a wonderful feeling, especially when you are facing uncertainties in life, facing days that are hard, facing daily struggles. Knowing God is there, knowing we just need to Let Go, & Let God. He is the one in control. No amount of worrying will help. Only prayer & trusting Him completely. And simply saying, "Not my will, but yours". His will isn't always the same as ours, we only see the here and now. He can see the end results. So we must simply put our complete FAITH & TRUST in Him.

 

"Who Am I"

Who am I, that the Lord of all the earth
Would care to know my name,
Would care to feel my hurt?
Who am I, that the Bright and Morning Star
Would choose to light the way
For my ever wandering heart?

Not because of who I am
But because of what You've done.
Not because of what I've done
But because of who You are.

I am a flower quickly fading,
Here today and gone tomorrow.
A wave tossed in the ocean.
A vapor in the wind.
Still You hear me when I'm calling.
Lord, You catch me when I'm falling.
And You've told me who I am.
I am Yours, I am Yours.

Who am I, that the eyes that see my sin
Would look on me with love and watch me rise again?
Who am I, that the voice that calmed the sea
Would call out through the rain
And calm the storm in me?

Not because of who I am
But because of what You've done.
Not because of what I've done
But because of who You are.

I am a flower quickly fading,
Here today and gone tomorrow.
A wave tossed in the ocean.
A vapor in the wind.
Still You hear me when I'm calling.
Lord, You catch me when I'm falling.
And You've told me who I am.
I am Yours.

Not because of who I am
But because of what You've done.
Not because of what I've done
But because of who You are.

I am a flower quickly fading,
Here today and gone tomorrow.
A wave tossed in the ocean.
A vapor in the wind.
Still You hear me when I'm calling.
Lord, You catch me when I'm falling.
And You've told me who I am.
I am Yours, I am Yours, I am Yours.

Whom shall I fear?
Whom shall I fear?
'Cause I am Yours, I am Yours.

"God is our refuge & strength, a very present help in trouble." 

~Psalm 46:1

"The Lord is good, a stronghold in the day of trouble; He knows those who take refuge in Him." ~Nahum 1:7

"And we know that all things work together for good to them that love God, to them who are called according to His purpose." 

~ Romans 8:28

"See what kind of love the Father has given to us, that we should be called children of God; & so we are God's children now & what we will be has not yet appeared; but we know that when He appears we shall be Him as He is & everyone who thus hopes in Him purifies himself as He is pure."

~I John 3:1-3

December 6, 2013 .... waiting on doctors

I called my doctor this morning. He told me yesterday he was going to call the UAB to set up an appt. This doctor I found out will be doing the IPSS test, it is the test where they have to go in a get a sampling of blood from the pituitary. Catheters are inserted and threaded to the petrosal sinuses. These sinuses lie along the internal aspect of the skull base and drain blood from the pituitary gland. Serum ACTH samples are drawn from the left and right pertrosal sinuses and peripheral vein. It is the test that if given the choice I would prefer to skip.. But if I understood right, this is the last step of the testing stage. After this test he said he would call to get me an appt with the surgeon.  When he called me back. He asked, have they not called you? I said, No.. He told me that the office of the dr at the UAB is suppose to call me when they have my appt scheduled.. Unfortunately they didn't call today. So hopefully I will hear from them Monday..

What about this weather.. brrrrr Yesterday was warm enough for capris & flip flops, today it is freezing cold.. ahhh life in the south..

The journey continues....Slowly... How Cushing's is affecting my mind, & my family

My story, my journey with Cushing's ...

Right now we are in the waiting game. I got my MRI last week, the radiologist called us into a room to show us on my MRI scan where the tumor in my brain is located. It is on my pituitary pressing on some nerves & shoving them over. This can account for my lack of mental sharpness, & vision problems. When I didn't hear from my doctor last week, I called his office. I found out he was on vacation. Thankfully he got back today. He called, I talked to him about 9am. He told me he was going to call a specialist at the UAB to discuss my cast & set my appt. He said he would call me back with that info. Unfortunately, I haven't heard back from him yet..Bless him, he just doesn't understand he is driving my poor mom crazy having to wait. I'm her child so she thinks I should come first ;) She thinks he should have called me right back. Of course I keep reminding her that I am not his only patient. But of course that makes no difference to a mom.

 Since I've been working on this post since last night, I keep having to change some info.. It is now 6pm. The dr did not call me back with my appt today.. I do not have a happy momma over this fact. Bless him he better call tomorrow :) Or she may pay him a visit. Oh I didn't mention he said that the dr there would probably be doing another test,Woohoo (NOT) This one I'm definitely not excited about. It is the test where they have to go in a get a sampling of blood from the pituitary. Catheters are inserted and threaded to the petrosal sinuses. These sinuses lie along the internal aspect of the skull base and drain blood from the pituitary gland. Serum ACTH samples are drawn from the left and right pertrosal sinuses and peripheral vein.


I have decided I'm going to use this blog to inform other about Cushing's but also as a way for me to vent at times, and as a way for me to deal with some of the problems Cushing's has caused, & is causing my family & I. So I'm going to attempt to do a series of .. How Cushing's is affecting my family & I.. I figure it is a way to release some of the different emotions I'm going thru while on this journey.. If you don't want to read my rambles I completely understand. But I beg you to please, pray for my family & I during all of this.. Thank you all!

If while reading this some of it doesn't make any sense you will find out why...

We are glad to finally get a diagnosis of Cushing's Disease. Of course finding out you have a tumor in your  brain is not good news to receive.  However, it is good to know why all these problems are going on in my body. Of course, it not a good feeling to know there is a tumor in your brain. But, at least after years,& years I have an answer. I have a reason. I have something I can tell to others as to why, why I have to take one day at a time. Why, I hate making plans, well I simply hate making plans because for several years now, I can't make plans. I never know what kind of day I am going to be facing! I may wake up & have a good, well, maybe good isn't the right word, but at least a day I can handle, if I'm blessed I might have a couple of good days. Sadly, they are normally short lived, & followed by many, many bad days. I hate missing out on things I love. I hate having to tell my daughter we can't participate in this event or this get together because I'm in so much pain, or my blood pressure is thru the roof, or my blood sugar is all out of whack, or my heart is racing & fluttering around, or I have one of my many, many migraines or I'm having a day I can't function, a day I can't put the right words together, a day that my brain simply seems to be working against me. A day when I can't pick up anything or hold on to anything without dropping it due to my body shaking. Those days, are hard! They are not only hard for me, they are hard form my family.

I'm not the only one facing this battle. My family is having to face it also. It really bothers me the way it affects my daughter's life, my husband's life, my mom, well all of my family & friends to some extent. My dd & I  use to love days & events we could go together just the two of us & have our Mommy/Daughter days. We both had to give that up, since I can no longer drive due to the fact my brain no longer functions right, I can't stay focused, I have not been able to drive now for the past 2 yrs. I'm 40 yrs old, & I had to stop driving at the age of 38. I will admit to you all that it  has been hard. There are times I would love to just go jump in our vehicle & go on a girl outing with Kaitlyn, to go see my friends, so we can sit and laugh & talk, to just go for a drive, to go to the Mom Nights Out events, to just go when & where I want to go. But for now that simply is not possible. Due to the last time I drove my daughter, we were both truly being watched over by God, honestly, we are blessed to be here. Because my mind simply does not function right a lot of the time. I forget what I'm doing, I forget where I'm going, I forget... I forget ... I forget. On this day, I forgot I was driving, with my precious child in the seat next to me. I was nervous because I was suppose to be leading a meeting of a group of girls in a Keepers meeting. I had started really struggling with forgetting things, & getting mixed up on things, a problem that was getting worse & worse. So I was nervous. I was so nervous I would say something wrong, so  I started praying.. Praying, you might be thinking, that's great! So what's the problem? Well the problem was not the praying, the problem was I was driving &closed my eyes to pray while going down a busy 4 lane. At which I did not think or notice a problem in the least until my sweet, precious daughter starts screaming before we hit the bridge. Okay, whew problem taken care of, right? ummm... NO, because then I was so upset over what almost happened I forgot I was the one driving, again. (duh, since it was just the two of us in the car, even though trust me we would have been better off if she had been driving instead.. Problem was she was only 11 at the time) So what did I do, YES, you got it I started praying again & once again closed my eyes. Thankfully, my screaming child brought me back around..  (I'm a huge believer in prayer, however, you should note DO NOT close your eyes to pray while driving down the road, especially a busy 4 lane.. Unless you are prepared to meet your maker, quickly) Now at this time, we were both really shaken up. And I thank the LORD we made it to the event, it was only with his protection. Sadly we then had to get back in the car to come home a couple of hours later. And my head was killing me. Let's just say this was one very stressful night. We finally made it home, by the grace of God. And needless to say I no longer drive. Especially since my mind function has continued to get a lot worse & WORSE over the past 2 yrs.

I have found that the good thing about typing is that I can go over & over & over what I'm going to post, so I can try to correct the mistakes I make (well at least some of them) How I wish there was a backspace, delete, correction button before I spoke) Online I can type, delete & retype. It takes me so long to fix a post, comment & stuff. But at least I can spend time on it before everyone else sees it. The words that come out of my mouth, are a completely different story all together. My poor family spend many days giving me some of the strangest looks, (I have to take a moment to say, knowing now I have a tumor on my brain & it is not just that I'm going completely CRAZY is somewhat a relief. Because when you have to admit your 83 yr old grandmother's mind & memory is better than your 40 yr old mind.. It is not very comforting.. It was not a comforting thought to wonder what in the world my mind was going to be like as I got even older, when I got my grandmother's age.. it was a scary thought) thankfully my family loves me, & are learning to try to read between the lines of what I'm saying & what I actually meant to say. Because, we never know what is going to come out of my mouth some days. Some days I say the wrong words, I say words that are not even words in place of words I've known forever! Words & sentences come out of my mouth that make no sense at all. It is hard, it is very upsetting for me, I try to brush it off now & laugh & make stupid jokes about all of this.. But there are times when I can't.  I'll admit this is a symptom I have to pray a lot about.

It's sad to admit, that while I have all these other serious health problems that Cushing's has caused me, the hardest ones for me to personally deal with are all the ones that are embarrassing, the ones that damage my PRIDE:


One of these problems that fall into the PRIDE category is the fact my mind doesn't function right anymore, on many days. (Thankfully some days are not as bad as other days, Some hours in a day are not as bad.) A lot of days I can't stay focused, I can't talk right on many days & say the wrong words. I can not cook in the kitchen alone anymore.. (that's a whole other post for another day.. let's just say a mind that is not functioning right, losing focus, forgetting what you are doing & cooking DO NOT go hand in hand.. Thank the Lord for crockpots, my husband & take out) Gulp, yes! PRIDE... Lord help me, while I have a tumor on my brain. I'm struggling with that old mean devil rearing his head over my PRIDE.. It has gotten better after finding out there is a cause, there is a reason. When you are use to being the ONE everyone else comes to for help, for answers.. To being the person, who can no longer read a book for pleasure due to what I read today, when I close the book & pick it back up I'm lost, I remember nothing. After many attempts of trying & trying, but continually having to restart the book every time you pick it up, you discover it is quite pointless to keep trying if I'm not going  to be able to make it past the first few chapters.. :( And I have always loved to read. I struggle with easy things, things I've known & done for years & years. Watching tv or a movie with my family.. Ha, I watch them, but you could turn around within the next day or two, put the same movie in & it may not register with me that we just watched it.. Hey at least I can watch something over & over & it not bother me.. My husband is constantly saying what are you watching? I'll tell him & he will say we just watched that, Of course I try to argue that I've never seen this movie, & I don't know what he is talking about he must have watched by himself.. But no, my sweet Katie will then say, Momma we just watched that, Of course my reply is well what is it about? What happened? or no don't tell me I'll watch it "again" by myself.. Ugh!!! I'm blessed that my family loves me so much.. Because I have to rely on them a lot.. I mean A LOT!! More about how amazing they are in a post for another day. I will just say I am truly blessed by the Lord, I have a wonderful husband, daughter, mom & a wonderful family all together. I love them all so much.. I wish they didn't have to deal with all of these problems. I am however thankful they are here to help me through each day.
 
Help me dear Lord to remember,
"Pride goes before destruction, and a haughty spirit before a fall." Proverbs 16:18


Join me next time on my journey with Cushing's, & what it is doing to my body, my mind & my family.. Thank you all for your prayers. Please continue to pray.

-Tina