I truly don't know how to put into words how poor my health is and how I just seem to be deteriorating faster. I'm trying to stop it, I'm trying to keep looking up on Internet info/new meds, but I mean honestly there is nothing I can do and THAT is the disheartening part. Some people think that diets and etc can help and I appreciate peoples help but diets are not the help for a disease that leaves you hardly able to eat. Plus when you can't absorb half of anything, how is supposed to help. Anyways, what I'm trying to say is I'm trying so hard to fight with everything I have, but I have nothing to fight with, nothing to fight against, ya know?
Most people would think I could go to my doctor? Find another one? More junk? First, my doctors are even at the end of their ropes with me. They say I'm beyond them and others. They even send my files to doctors in other states, which then the doctors send back, and say that they threw their hands up at it all. They then say that the doctors are doing all they can and they agree with what they are doing and don't know what they could do differently.
Some of you may have read on Facebook about our mission and goal as of now - which is the Mayo Clinic. For a while now Dr. Hecker has been wanting us to go to the one in Florida. Problem being, one we put so much money into meds, treatments, and health things right now, that we just don't have it. Second, with the wedding we don't have time. So the plan is to go next year as soon as we can get in.
So lately has been hell on earth for health. Most of you know my Andrew is a true Saint. I love that man with every ounce of my being and can NEVER thank the Lord enough for this precious man who continues to love me through all of this. Well we NEVER fight - last night however I think everything just got to him, and he was just so hurt by everything that is going on with me.
When I say my health is declining fast, I mean I'm literally pretty much bed/couch ridden again, I have no appetite what so ever, the cold drenching sweats aren't even letting up ONE DAY, just so many things - if I continue to lose more hair as I have been for the past two years, I'm going to have NONE for the wedding, and thankfully the leprosy medicine Rodriguez gave me fixed this last awful Erythema Nodosum Flare. PS - it was under my arms this time, which worried me because that means its even spreading, when I was younger and had it that one time (we didn't know what it was however then) it was on my legs, and up til recently it has continued to occur on my legs - well not anymore. I have pictures but they are on camera, so I will have to post later.
So the fight. We were leaving my house last night to come to his. Well he was starving and of course I didn't want to hear the word food. Yesterday for the entire day my body consumed 3/4 of a piece of toast with cheese and egg on top (Couldn't even eat the entire thing) and maybe 500 ml. That is IT! That is definitely barely pushing over a few hundred calories, maybe less.
So leaving and he is starving. He asked what I wanted to eat and I told him nothing. At that time my panties were soaked from the sweats, my jogging pants were wet sticking to me, my tshirt was soaked and clinging to my body, and even my jacket was wet in the inside. Well Andrew got upset that I didn't want anything. I then said, "Fine, I guess Sonic" Well he knows I can't eat hardly anything from Sonic, but Rodriguez has told me that if I can absolutely NOT eat, I HAVE to keep fluid in me, or else I will be in big trouble. So I was thinking a big cherry coke with extra cherry syrup to give me a lot of calories. Well, he laughed because I wanted a drink and got even more mad. So when we got to Sonic he passed it. I was upset and started crying because I knew he was upset. I asked him "why" and he said if I wasn't going to eat, then he could wait and eat when he got home. Needless to say I was upset because Andrew understands what I'm going through more than anyone, he sees how bad it really is, and here he was pushing me to eat, when I literally COULD NOT! Maybe some of you don't understand, but you learn to listen to your body with this disease, if it DOESN'T want to eat, well guess what, you try to eat and ALL THE FOOD COMES RIGHT BACK UP. Some of you have even heard me, I can't even hardly keep food down as it is. When I eat I do this thing where I continue to cough (it sounds like I'm clearing my throat). I have done it forever and until a few years ago, the doctors, my family, Andrew, and I figured out what was going on .
Well I didn't sleep last night, I kept staying awake and just felt awful, the sweats persisted crazily. Finally passed out maybe around 4 am. Woke up around 1 - Andrew was playing his game. Well when I got up he came and saw me and gave me a hug and apologized. He got a little emotional and just told me that he is so worried about me, that it scares him, and that he doesn't know what to do, and he felt helpless. He kept saying he was worried and I told him that I understood and that we all are - it was so cute though, because he then proceeded, that he was going to go get me a big cherry coke today. I laughed because it was precious and just told him we would see.
So I already woke up late, I as always just felt sick and deathly. I just lied in the bed and watched him play game. Finally picked up phone and made upcoming appointments for Dr. Rodriguez (Gastroenterologist) and Dr. Scroggie (Rheumatologist). I need to see Rodriguez for check up and we need to get this Megace business squared away. I told most of you that Rodriguez had told me that if my appetite didn't get better with that first pill that we were going to have to take drastic measures, well Megace is drastic. It is given to terminally ill patients who can no longer eat. I would have to take it 5 times a day and eat small meals. Well he wrote prescription and warned me that insurance was probably going to decline at first because we needed to send papers showing that I was on a type of chemo. Well dad had already taken the Megace prescription - just without insurance helping, it was going to be like $500 - we don't have that - so I told him I was glad he didn't get it and we would wait. Of course dad and mom kept saying if I needed they would find a way, but that was ridiculous to pay that - so we will just wait on insurance.
The appointment with Scroggie needed to be set up so that we can get further with this diagnosis possibility of Ankylosing Spondilitis which is very rare in women but is linked to Crohn's Disease. Dr. Hecker looked at the lists of all of my s/s and literally with the spine curvature and the lumbar and pelvic pain everything fits together with the diagnosis. Anyways, Scroggie would be the one who would need to diagnose since he is a Rheumatologist.
Moving along with the day, called Mom and had some more tears - just told her I didn't know what to do anymore. You go to doctors for help, you go to the Lord for answers and strength, and lately I just feel I am not getting any answers. I told her that the Lord didn't have to heal me, didn't have to find the cure, just let me know what was going on. Whether the Lord would just tell me that what I'm going through is not of this world and to keep pressing on, whether He would just tell me a doctor is coming along soon, or that I needed to keep going just a little longer. The Lord always talks to me and tells me things, and I just can't seem to get an answer lately.
I have prayed, fasted, fell to my knees, been anointed, praised, asked for forgiveness for anything and everything, continued to give my testimony when I barely can even make it to the church, continue to sing with my family even though I have to take so many pain pills just to make it through the singing. I love Him so much and I know there is a reason, but its to where Andrew can't watch movies with a wife or partner dying in them. Just a second ago we were trying to eat or he was eating and I was trying to, and his family turned it to movie where the husband lost his wife, and Andrew immediately got up and walked out. I'm just trying to convey how bad it is! I don't want sympathy, that doesn't help, maybe a little empathy, but I need prayers. I need people to pray for forgiveness and praise the Lord first though so that they can be blameless when they ask. I thank you all who consistently pray, it's all I know any of us can do write now.
Again continuing. Well my stomach was cramping after talking to Mom on the phone and getting upset so I ran to the bathroom where I sat and stayed. I ended up asking Andrew if he would please go get me some towels so I could jump in the shower. He brought me towels and I then hopped in the shower.
So now comes story time - I really do thank God for Andrew's house's little bathroom that is upstairs! It is small, it holds heat, and the shower is small so it holds heat. When I get in the shower with my cold sweats I immediately have to take the shower curtain around and steam it to the shower so that no air can leak in. When I get in the shower I'm shaking and have chill bumps from head to toe at the same time I'm dripping water from sweating. I literally at times have rain drop size drops all over my body at times, its unbelievable. So then I sit in the shower and just bake in there for one to two hours to try and help stabilize my homeostasis freak problems.
Well when I get in, my hair just immediately started falling into my hands. It upset me and I just didn't know what to do. I'm so used to my hair falling out but on top of everything I couldn't take it. I just sat in the shower crying, trying to get warm, and started washing hair to try and get all loose hair out. Finally after crying enough, I finished getting all hair out. Usually I just wad it up into a tiny ball, but when I stood up there was hair ALL OVER the shower. I guess when I first got in my hair was just falling out on the shower wall. Then out of some crazy where I just started laughing. All the hair in my hands I just laughed and said hmmm "this looks like a painting" - (yes a mad moment, but I was laughing and not crying so I went with it)
Well more hair came out and I added to my painting and this is what I ended up with! When I got out of shower and dressed, Andrew knocked on door to check on me and I opened since I was ready. I told him I had to show him something. He knows that the bathroom is like my little warm cold sweat haven place and he knows that I usually cry and talk to God and cry some more - well I added painting today with my hair. He just looked at me and laughed and said well thank you for painting a picture in the shower. He asked what I called it and I said umm "its a flower" and he said "what kind of flower?" - I said "ummmmmmmmmmm - a Crohn's flower. We both just laughed and I told him that I think the Lord gave me a therapy session. It was really like this crazy piece that was fun and made me smile!
this is my Crohn's Flower - haha
another picture of flower - it makes me laugh
just so you can understand where I am at with hair loss - this was taken like 3 months ago - so a lot more has fallen out - Mom and I do not know what to do about my hair for my wedding. Both the sides of my hair are pretty much bald except for the little that falls over - and now the top front is starting to go bald very fast. I've heard that insurance helps pay for wigs for that have diseases that make them lose their hair, pills/treatments that cause this - mine just happens to be disease, meds, and whatever else. If you read this Momma Tina or any other hair dresser, please try to help me come up with something!
these two pictures are just of left side
I guess it's time to end now. In ending thank you for taking the time to read, thank you for just supporting this blog - I felt the Lord telling me to do it. OH NO, I FORGOT THE BIGGEST THING!
OKAY - so in talking to Mom, I have come up with something - because I am a nurse and the doctors say I literally know more than they do and could diagnose patients better, I've decided that I'm going to wait like a month before calling the Mayo. I'm doing this so that I can make a binder - I have been doing documentary pictures for going on maybe 5 months now. It shows my face and its severe butterfly rash that literally feels like someone is blow torching my face. I have many pictures of Erythema Nodosum outbreaks, pictures of a distended abdomen to where I LITERALLY look 5 months pregnant (ask my family, Andrew, and best friends, its true, NO EXXAGERATION) Pictures that actually help show the curving of my spine. I'm going to print the pictures and make pages about each system, each organ, each extremity, anything that has problems, I'm going to write the details, write the clinical findings, the meds, what approaches have been taking, all of that!
I told Mom and Andrew and they think it is really excellent! I figured since I know so much and am on to more than most the doctors, and they've actually told me to do whatever I thought would help, I'm proud of thinking this up! It will be a "Messed up Me" scrapbook - literally 3 ring binder with pictures, explanations, and then I will end with possibility of the top disease we think I have and list what all signs and symptoms I have that fall under the categories.
I think I'm finished now. Again, please let me just tell you how desperate not only I am for prayers, but the love of my life is hurting so deep in his heart. He is so afraid he is going to lose me, and some days I honestly think its my last. Also my family. My parents and I have reached a break through in our relationship - just let me say when someone gets chronically diseased relationships hurt because everyone hurts and its hard. For my Mom its been hard on her because she can't fix it, she was used to this hyper, all the time on the go, athletic, muscular, child, who went on mission trips, taught ministries, just so much. For my Dad he can hardly look at me sometimes, when I have treatments he has to leave the room frequently because he can watch me get sick, when my mediport is accessed he has to leave because he gets sick, he can't listen to me cry, he can't watch me in pain, in the hospital he is pitiful. I can think of a few others that its been extremely hard on, like one of my dearest bestest friends who I call my Sister, she saw me even suffer with the stuff when I was younger. What I'm trying to say is I'm hurting physically and am so sick physically - however not only am I so tired of all of this physically, emotionally and mentally - Andrew, my family, and friends are as well.
So please pray, and pray some more, and then some more! I love you all and thank you from the bottom of my heart again for reading and supporting! I love yall!
PS - I didn't feel like re-reading to re-hash so if something doesn't make sense I'm so sorry, and you can ask if I wasn't clear on something - love and hugs