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Tuesday, May 14, 2013

TIRED!

I honestly am not sure where to start with everything, so I guess I will start with this past Thursday (5/9). I monogrammed up at the store some that day, then left the store to go to the hospital and have my mediport flushed. When I first got there I signed in, then went to the area where Rene works so that she could access my mediport and flush it. I immediately began talking to her, telling her about how I was feeling. I then went on to tell her that the weight was still there, that I had even gained a few more pounds, and that there was still no explanation of why, what, and how. She asked if the Vitamin D situation had been fixed and I just gave her a look. (My Vitamin D had been low a month, but the doctors hadn't called in any 50,000 units to begin. Moving along...

(My last treatment was on/around 4/9/13 and that is when my last blood was drawn - I know that we drew a CBC, C-Reactive, Sed-Rate. and all) She couldn't believe that this was a month and my Vitamin D STILL had not been taken care of. We then were trying to remember what my Vitamin D's reading was on the last blood work. We knew that it was lower, but couldn't remember the exact number. She said to give her a minute and began looking through my chart. I quickly said Cortisol? I had seen where there was a Cortisol drawn on me. I asked, "I had my cortisol checked?". She said, "Well if it says it then we did it." A thought ran through my head and I said "Well cortisol can have an affect on weight now can't it, so what was that level?" She found the Vitamin D reading and then went back to the Cortisol so she could check it's findings. The Vitamin D was like a 19 I think, but my Cortisol was a 2.2. Your Cortisol should be between 6.7 and 30 and MINE WAS A 2.2. We knew that was ridiculously low and I immediately started repeating "Oh thank you Lord, thank you! Thank you Lord, thank you." I was trying to figure out how this had gotten overlooked, why no one had called me about it, etc. etc. - then we see at the top of the paper where the results were faxed to Dr. Rodriguez's office. Well...Dr. Rodriguez was gone for 3 months, so how was his office supposed to have received the fax and given them to him.

Dr.? was the one who had ordered the blood work so the hospital should have sent the fax over to him.  Well she knew the level wasn't good and said that she was going to walk the paper over to the doctors office once she finished up. I just remember feeling like could this be it? Could this be the answer to the weight!? Could this be the answer to so much more??? She looked through her notes from school, and read about cortisol and the testing that was after finding low cortisol. So once she finished her work, I began walking to leave the hospital with her. As we turned the corner, she saw Dr.?, so we both looked at each other and I knew that she was going to show him the papers. I left the hospital and went home waiting for a call from her to see what all was said and what would happen next.

I ended up talking to her and she said that he was very apologetic and hated that this had been overlooked. He said that something needed to be done, and that they said the next step was to draw blood for an ACTH test. She then asked would I be able to come in the morning so that they could draw the blood for that test and I told her sure. So, the next morning (5/10) Drew drove me up to the hospital even though he had just gotten off work. As soon as we got there she asked if she could draw from a peripheral area since the blood work needed to get in by a certain time. Well, we didn't want to waste time trying from the mediport since it hadn't given blood return during the flush the day before. I told her that was fine, and she said that after she would try and see if mediport would give return. I thought I would have to go the lab for the peripheral stick and next thing I knew she was getting the stuff to do it. I don't allow anyone to use my left antecubital spot because it is saved for Rodriguez's office - since it is like the only vein I have. Well...I trust her and decided to let her use it. Before I knew it she was already in the vein drawing blood, and I didn't EVEN feel a THING! I am so used to people poking and prodding me, moving needles while they are still in me, jerking around, etc. etc. and here she was doing like a magic needle trick. The Lord just has blessed her and she really doesn't hurt and you don't feel a thing. After she finished drawing she put the vial of blood in a cup of ice. Here miss future Nurse Practitioner had read up on the ACTH test and knew all the special things you had to do for it that you don't usually have to do when drawing blood for normal routine tests.

She told Andrew and I that she would call and let us know after she had talked to Dr.? again and let us know the plan from there. She felt that with how low it was a month ago, surely he would more than likely put me on some medicine so that I wouldn't be so ill feeling throughout the weekend. She also said that we should more than likely be receiving word back Monday from the bloodwork. So my orders were to rest and relax. So I came back home and kind of laid around. The cold/sweats were bad and I still felt as though I was dying physically, and then around lunch scariness happened. I immediately got this different form of nausea and I knew what this nausea was - fainting nausea - I didn't know what to do! Andrew was asleep and there was no way I could call out for help to him, so other than that I was alone, I took a few steps to go to the bathroom and got even worse feeling, I slowly took steps back to the couch area and dialed Rene's number leaving her a message telling her how scared I was. After I hung up, I just tried to breathe slow. I knew if I went out, faint wise, there was no one to see me go out, so I would be in a bad spot. I continued to take slow breathes and leaned over on couch to just lie there. About that time dad walked in and knew how I felt just by looking at me. He was like "If I need to get Mom by myself I can" When I didn't answer and just made noise, he knew even more how sick I was. The feeling eventually passed by and I went into the restroom and looked in mirror. My eyes were very dark, my skin was white dripping with sweat, cool to touch, and my lips were white to match my skin. Rene called me back and I explained what happened. She told me that I needed to rest as much as I could, and that she would let dr.? know, and as soon as she had word from him she would get back up with me.

Later that night I rode with Dad to Huntsville. The five hour trip was pretty rough on me, but to be honest, there was no way in heck I was going to be left alone while Andrew was at work during the night. No way...especially with how awful I was feeling. That, and the fact that I was hoping the next day Mom could help me find a small little new wardrobe from the Old Navy there since I had NO clothes because of my +40 pound self.

Saturday (5/11/) I didn't sleep good the night before, and then woke up early on Saturday. I was feeling not so hot, but knew I needed clothes, and was set on having to get SOME kind of clothing for me. That morning Dad answered cell phone and it was Dr.? for me. The first thing he asked was what pharmacy did I use and I told him. So I was thinking that like Rene said he saw the results from the Coritsol and was wanting to start treating me immediately to help. He asked how I was feeling and I told him. He then told me just a little about the ACTH and said he knew that Rene had talked to me about it, the testing, and more. I told him that was so. He then asked what signs and symtpoms were going on - I told him about the weight gain, and how I wasn't hardly eating anything to even gain a few pounds. I then talked about the cold drenching sweats and some more symtpoms like being dizzy and out of it, etc. He then repeated what my cortisol was and I told him yes sir that I knew. He said that the ACTH test should come in the beginning of the week and that once the results came back, we would know much more. He then told me the treatment plans if it showed Addisons's Disease. He asked if I had any dizziness or weakness. I told him that I did and then told him that I felt as though I was dying and had been telling my family the same exact thing for a few months now. I then told him about my almost fainting episode. He then next said that he didnt want to call me anything in because he wanted to hold off. He then said he wanted to hold off because he didn't want to call in the medicine, me begin taking it, and it affect any blood work we may have to draw. So then I began to get even more upset and began crying. I asked him what was I supposed to do, and again told him how bad and scared I was that something bad was going to happen to me. He then tells me he understands but he still just wants to hold off. I said what am I supposed to do, go to the hospital if I get worse or think something is going to happen. And he said yes, I think that would be best. He then follows that if I faint or become unconscious go to the hospital. Another part that just blew me away is when he said "Well it isn't like this has been going on for long, so we are ok" I immediately said this hasn't just been going on, this HAS BEEN GOING ON FOR ALMOST OVER A MONTH....I told him that blood work was drawn before the treatment that day and that was almost 5 weeks ago. The only reason I knew this was because the day before I had my port flushed.

I think I am just going to end there on that note. I so badly wanted to say well, what if I am alone and faint or become unconscious....especially unconscious!?! I guess whoever can find me on the floor a few days later or when I become conscious again I can just walk myself to the hospital if no one is there or around.

I am not being disrespectful by writing this, this is my blog, so if you don't feel right reading it, you can leave. I am a nurse and have been BUSTING MY BUTT trying to get to the BOTTOM OF THIS BY MYSELF! AND YES LET ME REPEAT- BY MYSELF! So many people act as though they are helping and care, when they really don't. Everyone only cares about THEMSELVES! Numero Uno!

Half of the doctors I have been to - I MADE THE APPOINTMENTS! I went to TWO doctors in Jackson and told them about the 30, 35, now 40 pound weight gain, told them I was BARELY eating, and I guess they thought I was lying because they went no further. One said that it was a mix of my medicines. And Dr.? did order the abdominal ultrasound but that was it. You want to know how the cortisol was ordered. When I went for my treatment around 4/9 I told Rene about the excessive weight gain, well she wanted to see and weigh me. I remember then I had gone from like 118 to 138 which was about 20 pounds on me then, she then said "Well baby, it looks like we need to get a cortisol on you" She then went to Dr.? so that he could write an order and he did. Thank God for Rene and her knowledge because when I told the Dr. about the weight it was as though it was not a big concern. I KNOW MY BODY AND KNOW WHEN SOMETHING IS BAD WRONG!

So Rene listened to me a month ago thus why it was drawn then. Now a month later and doctors still aren't listening.

I was told that Monday the blood work should come in and guess what, NO CALL Monday!
I am tired, sick, out of it, and have been out of it, crying, laughing, sad, mad, Allison. Can't control thoughts, motions, walking, typing, etc. etc. I am as nauseaous as all get out, don't want to eat, migraines 24/7. Just a wreck. Half the time I feel as though I am having out of body experiences and just feel dizzy light-headed-mixness. I can't explain how awful I have been but it is anything and everything mixed in a blender a bunch of times and served. That is what I am is that!

So what we are looking at - is the Cortisol low because the Adrenal Glands? or is it low because of the Nervous System (Pituitary Gland, Hypothalamus)? If it is low because Adrenal Glands then we are more than likely looking at Addison's disease which would explain me for sure because I am RARE and it is RARE!

I am getting worse nauseous though and I am finally starting to get tired along with back pains, so I need to get off. I truly hate being restless, it is a horrible feeling. If you are reading and you think I am being ugly in coming out and telling the truth then I am sorry. I am sick and have been for too long. If I can help those who are in my shoes get out of my shoes then I am. I don't want other sick people going through what I go through. I want to HELP! I want to tell you who not to go to, who to go to, what to do, not do.

So here is my advice if you aren't receiving answers - First, pray to the Lord for direction. Second, listen to your body and pay attention to the signs and symptoms. Third, just because a Dr. says so, doesn't mean it is so. I have had so many tell me things that were NOT right. You KNOW your body and if you are telling them something and they AREN'T listening, then they aren't worth your time. If you tell them you KNOW something and they don't believe you, you are wasting your time. YOU ARE the BEST to KNOW YOUR OWN BODY! So pay attention to what it is saying. Four, NEVER give up fighting! You may spend a bunch of money like me, see a bunch of doctors like me, and travel around wherever like me, but if it is worth it that is all that matters, and if you want to truly get better and know what ails you, you will do the same. I can no longer work on this either just because my back and restlessness, I know it is unedited and still needs fixing and finishing but yall deserve to know and I want yall to be caught up so here you go.

Monday, May 21, 2012

Diary of a Mad, Frustrated, Crohn's Diseased Woman!

So many things I have in my head, so many things to write, but don't know where to start. Let's start with *deeeeeeeeeeeep breathe*      -        to say that the past month has been hard, that I have cried millions of tears, is an UNDERSTATEMENT!

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

Wednesday, February 22, 2012

Dr. Hecker Appointment - Watch, Wait, then Plan

I can't believe I am doing two posts back to back! It's been so long since I have done that! BUT with the Miracle post, the big appointment today, and all of the sweet responses to everything that has happened...I know that it was important to let you know what was said at the appointment with Dr. Hecker.


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First of all, I want to say thank you. I want to thank you for your support, your love, and for believing in me.....most of all thank you for your PRAYERS! I know the Lord thanks you as well. No, I am not speaking for Him...but I KNOW in my heart, this is ALL a part of His plan. He has told me and shown me this...so for you to pray and support me through this journey that He and I are taking together...I know He will bless you for helping bring honor and glory to HIM!

I have known since I was 4 years old that the Lord had something big in my future and in my walk with Him. I have had my visions and dreams since that age and have always felt His presence so strongly since then. At times I get a look into what it is, but I never get the entire picture.

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As most of you know from older posts, as a child I was healthy, but had strange/odd/freak signs and symptoms. From wearing knee braces on both legs, joint hyper-activity and pain, to weight loss, stomach pains, oh the list could go on and on. Like I said, the Lord told me that He was going to use me in a mighty way, not for myself, not for my glory, BUT for HIM...for HIS GLORY...for HIS KINGDOM! When I was younger, I didn't realize that all of the odd health issues would possibly connect, but as I got older He slowly began revealing to me that this sickness and disease is HIS plan. That from this is going to come something far beyond my comprehension.

People say "the Lord needs to heal you", "you need to have faith He is going to heal you and He will" "you need to pray harder", along with many other things. To that, I have to say FIRST, Lord DOESN'T need to do ANYTHING we want Him to! It is not about how much faith you have, how much you pray, how much you do this or that...it is about His plan and will for our life. If we understood everything in the Bible, understood His ways, thoughts, and all other theological things, then why would we need Him...we would know it all! That is what FAITH is...NOT knowing everything, yet still BELIEVING that He is there and He knows what He is doing!

As His word says is Isaiah 55:8, His thoughts are not ours, neither are His ways our ways...He then goes on in verse 9 to say that His thoughts and ways are GREATER than ours! Our trust and hope needs to lie in His hands....our worries and concerns need to be laid down at His feet!

Yes, at times, I cry to Him and ask Him to remove this cup...at times I say that IF it is HIS will, to please take me Home. We are flesh and this is normal...who wouldn't long to be with Him? Yet in my heart I know that this is His plan...that through this He wants me to be as Job, as Paul and the "thorn in his flesh", as He when He took the cross for us. We can be strong in and for Him, because HE was STRONG for us! People forget that yes, He was still God, but He was in a FLESH body...He suffered, He had pain, He shed tears, and He asked to have the cup removed. He will understand more than ANYONE ever could begin to!

 The thing is, as Christians...we have to show others, that even through the good times and the bad times, our GOD is THERE and He is GOOD! We have to show others, that the only way to make it through the trials and tribulations of this life is with HIM!

I get aggravated when people take 1 Corinthians 10:13 and paraphrase, saying "The Lord will not put more on you than you can handle". It bothers me how they word this paraphrase! It is NOT that at all! It is not our strength that gets us through trials/tribulations/temptations...things DO get too much for us...to hard...BUT IT IS with HIS STRENGTH, HIS MERCY, and HIS LOVE we CAN  handle ANYTHING and EVERYTHING! So when you think of 1 Corinthians 10:13 and you paraphrase...make sure to give HIM the glory and not us...tell them "Yes we will have more put on us than we can handle...BUT WITH HIM, we CAN handle it...our STRENGTH comes from HIM"

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I am so sorry I am getting off on my preaching! I just feel His presence over me at times, and I can't shake it...I have to tell others what He tells me, I have to let everyone know that He is here, He loves us, and that if we YEARN for Him...if we HUNGER for His presence and His love....if we show and let Him know we NEED Him and want MORE of Him....He will INCREASE in YOU! Never settle with where you are in your relationship with Him! Always want Him more!

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Appointment  -  February  22,  2012  -  Dr. Hecker


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Dr. Hecker has been the one doctor who has fought for me harder than anyone else. He is a Godly man and a man that see the truth of what is going on with my body and health. He knows that the exterior is a facade and that the interior is a mess. He never gives up on me and always end the appointment with "well if your case was easy, if this disease was easy, someone would have already found it...what you are dealing with is a mystery, so we have to take our time...but we will find out eventually with eliminating what is wrong"


My appointment was at 10:45, so I wasn't necessarily the happiest little girl this morning. It is hard for my body to get going...between the joints, the muscles, oh well...I well just say with my body...mornings are hard. The Lord gave me strength, and Andrew helped as much as he could.

We arrived, and I was so jittery to see Dr. Hecker. I was excited to see him, because two months was a long time for us not seeing one another. I was ready to talk to him about some more sign and symptom concerns, tell him about new meds, but MOSTLY about the Chemo increase. I knew that He was going to be very excited. Not excited about how much more serious this made my chemo treatments, or how severe the anaphylaxis and side effects would be, but excited that maybe after a few treatments my awful case MIGHT JUST respond better - rid me of many of my disease symptoms...or even better possibly a chance at going into Remission for ONCE!

We got called back and now I have to tattle on myself...I get tired of all of my doctors harping on me about my weight...so I wore the thickest/heaviest pair of leggings I could find, the heaviest shoes I had, and a thick thick sweater dress, with my knee length pea-coat! Oh and add more jewelry than I would normally wear! I had a GOOOOOOD 7-10 pounds on me....BUT I did it :) I weighted 116...so I added my clothes up real well! :) My nurse kind of laughed at me...I was going to hold my purse too, but I knew she wouldn't let that one slide! So whoop whoop!

Dr. Hecker came in, and I think the room was filled with SMILES! It was so sweet because he gave me the biggest, most firm hand shake I have ever received, and it just lasted and lasted as we smiled at one another! So I began jittering away and he just smiled and chuckled at me! He told me I looked good and I gave him the evil eye. So...I will give you the list I gave him that I wanted to go over...our options, what he needed to know...our catch up list (with treatments your memory gets a little fried so I have to write stuff down now or I will forget)

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*Remind Dr. Hecker about my severe migraines and severe headaches.*

    - see if I would be able to take migraine medicine
      (with being on so many medications, you sometimes can't take other medications because they don't go well together, so that stinks and you have to see if certain meds will be compatible with your disease and other medications)

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*Tell Dr. Hecker about how the cold sweats/hot flashes have gotten more serious.*

    - My body during this hypersensitive times is getting worse. When I have the cold sweats and I get in a HOT shower to try and get my homeostasis in balance, the HOT WATER literally will go NUMB on my back...I can feel the water, but not the temperature....its very scary and not a good feeling.
    - Also...about the time when I turned on SCALDING HOT water (mom felt it after)...I didn't know and washed my hands under it, not feeling it was scalding. After I washed them my hands were bright red and puffed up with slight burn feeling. Mom then had me cut water back on to where I had it and she couldn't even place finger under.

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*Ask about Mayo and what he was able to tell them/do?*

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*Tell him about my medicine to make me eat.*

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*Show him the salmon skin rashes on my arms.*
  
     - most of you have seen my Erythema Nodosum picture - which is a SEVER complication symptom from Crohn's and a few other Autoimmune Disease, but it only shows in Chronic and Severe cases...well the rash on my arms is not pustules not ulcers...they itch slightly but are like little red spots clumped together...almost like a little petechiae round cluster. (You can google petechiae to see what it looks like) He has already seen my chest inflamed in this rash...I look like a red chested monster!

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*Ask him about Adult Onset Stills Disease.*
  
      - On my last post I wrote about the Mystery Diagnosis case. She had this disease. Dr. Hecker and I have said that this is a big candidate for the other disease that is killing my body. The thing about this disease is that there is NO TEST OR PROCEDURE to diagnose it.

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*Tell him about Remicade Treatment Dosage Increase. (From 5 mg/kg TO 10 mg/kg)*

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Now I will go over the answers that he gave me for the topics - and yes we had a good hour long or little over hour appointment - and it was an amazing appointment because....just because the Lord is good and Dr. Hecker is a Believer

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*Migraine Topic*  -  This was a bummer. He said that there were many migraine medicines out there, but the reason he never gave me a prescription for one is that the migraine medications and pain medications do not mix. If anything they are like oil and water. He said to take the migraine medicine I would literally have to be off of all and any type of pain medication and that would NOT happen. He said with as much pain as my body was taking daily, the pain medication is the number one thing I need. It actually sometimes can even cause migraines. I told him that when they are bad enough I take my pain medication because I literally go into these fits where I just jerk my head, hit it, cry...I go into a terrible state with them, so I have to take something. He said that was ok, but that pain medication actually doesn't take them away...it just weans them off, but that I have to do what I have to do. HE DID however have an option to try. He said that when I think I have a migraine coming on....immediately take one of my Phengergans. He said that the dopamine in the Phenergan would do a reuptake and possibly help and stop the migraine! :) Pretty cool huh? so for all you migrainers out there....take a Phenergan (anti-emetic (which means you take for nausea and it is supposed to stop you from vomitting))

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*Numbness that goes with Cold-Sweats/Hot Flashes*  -  He told me that he didn't like this and that it really scared him because I could hurt my self badly and could put my self into serious danger not being able to detect temperatures at times. He said that when we did the nerve study, the nerves reacted...but then he added that it was unbelievable that he stuck a 6" needle into my muscles from my ankle to my arm and I didn't flinch, have pain, move, NOTHING - and no...I had no pain meds that day, NO sedation, NOTHING! and you all know I'm skinny...no meat on my arms...imagine a needle sticking into dep muscle in your arm...crazy huh? He then went on to say that he still believes with as severe as my Autoimmune Disease is and the fact that there IS another one...I have some type of neuropathy going on. He said that is something that will take time to figure out...but we know there at least is a neuropathy problem.

What is neuropathy?  Neuropathy is a collection of disorders that occurs when nerves of the peripheral nervous system (the part of the nervous system outside of the brain and spinal cord) are damaged. Neuropathy can affect nerves that control muscle movement (motor nerves) and those that detect sensations such as coldness or pain (sensory nerves). In some cases - autonomic neuropathy - it can affect internal organs, such as the heart, blood vessels, bladder, or intestines.

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*Mayo Clinic* -  this part was a little sad, because when we saw one another last, I had wrote in my post that he was going to call them, tell them all about me, and try to get it set up where they would not run tests for months, but get me in there, let me stay there, and do everything within a few weeks so we wouldn't have to rent a place or stay in hotel...that way I could stay in hospital and mom could stay in hospital with me. Well...bad news is he said that when he tried calling, he just can't talk to a doctor. He said they said that I had to make myself a patient there. Then after I admit as a patient to them on the phone or online, THEN he could talk to the doctor and tell him everything about me. Again I told him the only way I was going is if he called and VERIFIED that I am not crazy and tell them he has seen all of my freaky stuff. I was like "Dr. Hecker...just please tell them that I am messed up and that it is a really freaky case"! He started laughing and said "Allison, I think if you show up at the Mayo Clinic, they already know that"! I just laughed...oooooh Dr. Hecker!

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*Medicine to make me eat* -  Not much to talk about. He just looked like he hated that my health has gotten to the point that its that severe.

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*Salmon rash* -  Again...not much to say...Im just a messed up case! He did say that WE were GOING to be on Mystery Diagnosis one day (he knows I get mad at that show because everyone gets fixed and not me LOL)! and then I was like....well you HAVE to diagnose me first with my other junk! It was just more laughing and trying to be positive!

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*Adult Onset Still Disease*  -  He agreed that it is still a big candidate for my other disease, especially the fact that I have EVERY sign and symptom, there is NO CERTAIN test or procedure to diagnose it...and it just goes together....plus I am right in the age range for when the first peak of the disease starts/happens. I will tell a little more about this below.

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WHAT WE HAVE BEEN WAITING FOR!

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*The Remicade Topic* - I told him about being hospitalized in January. How I was so dehydrated that they could not even get blood out of my MEDIPORT - he said he believed it. I told him about seeing Rodriguez and continuing to fight over a year now to get the Remicade increased. He already knew from before (me telling him) that Rodriguez said it was the insurance. Dr. Hecker along with all of my other doctors has been wanting the Remicade increased for a while now....just because it is our last hope with all of this as a treamtent option.

So...I tell him everything as I told you in the post, and it was like this big wave of excitement over him. He was so happy. He was like Allison, this is great! He said this is a PERFECT thing to be happening right now. He then said that if I have Adult Onset Stills Disease, it's treatment is the Chemo also (the Remicade treatments). He was concerned about me being on that much and worried about me and my next treatment. I don't think I can put into words how serious these treamtents are...it isn't putting a bag of saline up and running it. It is potent...if you look up...it is a type of chemotherapy...and the risks with that are big...the recovery is hard. That was his big thing...he was worried about me and my recovery...he was worried about if my nurse would watch me close, if she would know how serious this was....I told him Mrs. Rene was at one time a Chemo nurse so I'm sure she knew the importance and seriousness of everything. So then he gets excited again...he was like this is what we needed....he then found out that my next treatment was March 14...so he told me to call him in April and tell him everything that I'm feeling...let him what things were worse, what things were better, if there was a health change...EVERYTHING! He was like, Allison this will help us so much on your case. If it is most of your Crohn's that is doing this, then hopefully we will find out...if you don't get better with the maxed out does...then we will know we need to be getting to the Mayo fast. He then said if I noticed it helped some to...that we could maybe start getting diagnosed with the Stills since its only treatment is the few options with Crohn's and since I'm at my last that would be the Remicade....so two disease that need the same thing. Lord, if it doesn't work, I'm going to need some BIG donations to the CCFA .... just not for a cure, but to find more options for people that are in my shoes.

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So....a lot in one appointment. Some worries and concerns and then some excitement! it is so pitiful though when I get up to walk out...we give him hugs and then when we leave the paper on the table is soak and wet from me sitting on it...cold-sweats...I mean the paper is pretty much deteriorated from me sititng there...quit embarrassing, but he thinks it is unbelievable. When he performed some neuro tests on me, he had to check hand eye coordination and when he touched my hands they were like ice but were literally dripping wet! I guess it's like having a fish as a patient, LOL!

This post was an extremely long post, but I want to document as much as I can, and I want those that care to know as much as they want...I want you all to feel as though you are at the appointment so that you can truly experience this journey with the Lord and I! I know that was a reason for me starting this blog...the Lord and I were talking and I knew I wanted a way to put all my emotions into a physical way....I take everything and put it all into words...so it is a release. Most importantly...the Lord kept telling me....I want you to tell OUR story....so that is when I began the blog. I'm not sure if all of you know how to work a blog, but if you want to know the beginning of our story...scroll down my blog and to the right side of the page you will see BLOG ARCHIVE - you can click by the year and when you click the year it will show months....of course you can guess if you want to see how everything began you go to the eldest year and start with the eldest month. (not sure if that was correct grammar and I'm nuts about that stuff so excuse it...also excuse this entire thing, because after my appointment I got very sick and have phenergans mixed with percocets to fix a lot of pain and a lot of nausea)

Again, I love you all very much...your support motivates me, it encourages me, and it makes me fight that much harder! I will say it again, the Lord will bless you greatly for being there for one of His children He has called to the Battlefield for Him! To have so many of you read this and know my thoughts, feelings, emotions....I don't know...it helps...it helps that instead of just looking on the outside, you get to see what is really going on. God bless you all, you are prayed for, and loved so very much by me!


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Also, if yall ever have a question about something, or you want to know something a little deeper, just comment below...there is a box on my blog were you can post.....that way I can see it and answer. Always feel free to ask anything...I want you to know as much as you want!

Tuesday, February 21, 2012

My God NEVER Fails!

Before I talk about the facebook post, I have been wanting to post some pictures I had taken on my blog. Again, I write this blog for me...to release things, to get rid of some burdens, and for those that read - keep them updated.

So the pictures I am going to post...People always tell me "Oh you look so good" this and that, that and this. I know they mean it, but its hard when they say that and you don't feel it. Another thing is when people tell me my hair looks good, yet I know I have bald patches everywhere. So for myself to let it out...*can't believe I'm doing this*...I'm going to post four pictures...when I blow dry my hair (excuse me...when Andrew or my Mom does)...you can see the balding very badly since the hair little bit of hair I have is blowing around. While in the mirror with the blow dryer...I was like take a picture Allison... Post it, and let it out. Show others but most of all just post it so that you can let it out! So that is what I am doing!





The back of my head is not as bald as the front and sides of my head. I know this sounds odd, but sometimes I have so much pain in my scalp. You can actually feel pain where your hair follicles are...it is a burning sensations all over your scalp...and then the next day it will come out in patches. when I take a shower is when I am able to brush through my hair with my fingers and get rid of the fallen hair. Not the same amount comes out every day...some days barely any, some days a palm full.



Now for the news!

Facebook status: "for all that follow me and my health...I am overwhelmed right now to the point of tears! Thanks to my Mom and the Lord another miracle has happened! I am not healed...just know that something AMAZING happened! I will post a blog tonight so be on the look out and PLEASE read! I love Rodriguez again and so very much! Thank you Lord! I'm wanting remission for my wedding gift!! God is so GOOD!"


Now comes the time where I explain to you why I posted this! First off...I'm not sure that whoever reads this post, will have read the previous post on my blog! So for those of you that missed out on my last post and many posts before...here is a catch up....

A little about my last blog post:

"As many of you know....and as I have written a billion times before...the two blood tests that you can check to see if the Crohn's is in control or not is a Sed Rate and a C Reactive Protein. Like I have written before as well, these tests can be FALSE for Crohn's patients. You can be in a flare and the labs normal. Rodriguez had told us about this in the beginning. If I'm not mistaken also...when I had my colonoscopy and was all nasty inside and diagnosed with Crohn's...my labs were normal. But then again, my numbers have always been normal when it comes to those labs! What I'm trying to say is both of these labs with Crohn's can be very FALSE...so you can never judge where you are with your Crohn's by these two tests.

Well...the problem is we need these tests to be elevated so that we can get my treatments either 1. moved from 8 weeks to 6 weeks, or 2. changed from 5mg/kg to 10mg/kg, or 3. BOTH!

Now I will say that Rodriguez has been busting his butt to get my Remicade treatments increased and cut back, but insurance will NOT let him because they want to see labs!

Mom brought all of this up again to him and got emotional...she told him how Mrs. Sharon's son (people we know) literally almost died from the Crohn's (just never got better and kept getting worse - like myself) and finally his labs increased and they were able to change the treatments...since then he has been a new child! When his mom talks about it, it will make you cry. She literally thought she was going to see her child die...and then when the treatments changed, she said it was like night and day difference! He lives a normal life now! So mom truly believes if we change mine, I will get better! Rodriguez went over it with her again, and we all got frustrated!

He said, "I know she is sick, that she isn't better, that her Crohn's is not controlled, that her signs and symptoms show she is not better." He then said "and I'm the doctor knowing all of this...but it doesn't matter..." then he went on to say...The thing is you have your insurance people sitting behind computers looking at numbers wanting them to be elevated...if they are not then it's not good enough and they will not allow (or pass/ok) the doctor to change dosage or frequency." So then mom got upset at insurance!

After he left the room I just sat there and looked at mom. I was like you know what this is....a BIG vicious cycle! The infamous lines "You are very sick, oh wait, there is nothing we can do for you."


So all of that is from the previous post! Also in the previous post, I had asked all that read to PLEASE pray for my C-Reactive test and Sed-Rate test to be ABNORMAL so we could get the treatment (chemo) dosage raised from the 5mg/kg to 10mg/kg.


Well the other day, I was flipping through the channels and something told me to stop on Mystery Diagnosis. Of course I didn't want to, because I'm tired of seeing other people's long stories get figured out. Of course I am happy for these people, it's just hard for me to watch their happy ending, when my own story seems to just be the "never-ending" one. If anything I have learned from this disease/sickness... - I don't want ANYONE to suffer with a disease,, illness, disorder, sickness, etc...I don't want ANYONE to have to deal with pain and nausea daily, fatigue, restlessness, etc...

It hurts me right now that so many suffer in this world today. I want to be here with my family and friends, but after dealing with suffering like this for so long, it brings you to the point where you want to be in Heaven with your Savior...in your new glorified body.

So back to the show. I decided I would listen to this feeling. Low and behold it was a nurse...a nurse who had ALL the same signs and symptoms I have/had, all the same tests/procedures, many of the same specialists...it was unreal. In my head I was thinking, she definitely has Crohn's Disease along with another Autoimmune Disease. Next thing I know, Mom is watching, Dad is watching, and I'm getting emotional watching. I mean this lady on tv was telling what she felt physically, what she felt emotionally...and it was like watching myself.

The show ends with her having the diagnosis of Adult Onset Stills Disease - something my neurologist and I have talked about often. There is no test to diagnose this disease, so we still think this dx is a possibility. You literally diagnose the disease based off of clinical observations. Ready for the treatment option for AOSD? Just take a guess? I will give you a hint....it's a type of Chemo-therapy. REMICADE TREATMENTS! *bum bum bummmmmm*


So the show ends and I'm like WONDERFUL! Remicade! After my sarcasm and anger wore off, my brain started turning and thinking. Then the wheels turned faster and I thought *well if we can get Hecker to diagnose me with the AOSD and Rodriguez already has me diagnosed with Crohn's...maybe we could get the Remicade dosage increased. With both diseases needing this treatment you would think you would need to increase its dosage. Also, Dr. Rodriguez has been wanting it increased...so this could work!

So then Mom and I get into a conversation about my treatments, insurance, and Dr. Rod.  She finally asked, "Allison, do you think it would help if I called insurance and told them about you and your health...about how bad everything is, and how we NEED that 10mg/kg...MAYBE somehow it would help" I told her it wouldn't hurt, but didn't expect anything out of it. Surely if my doctor was calling and sending requests, and they weren't listening, what would make them want to listen to us.


Today - February 21, 2012

Well this morning I woke up. Little did I know what was going to happen today!

Mom had called insurance and had talked to them about my health and about my Remicade situation. Low and behold Insurance said THEY APPROVED the REMICADE INCREASE from 5MG/KG TO 10MG/KG and that this changed should have taken effect during THIS YEAR for sure.

Crazy! That means that I would have already had THREE CHEMOS with a HIGHER DOSAGE! so of course we are going....hmmm...what is going on?

Well Mom called Rodriguez's office and as always the front desk and nurses are idiots! (I don't mean this in an ugly way, just the God's honest truth). So mom talked to the nurse and explained what was going on. The nurse then typed up a message to send to Dr. Rodriguez and at the end wrote to call us. Well, no call from Rodriguez, but a call from the nurse again. This nurse had the NERVE to tell my mother that she told Dr. Rodriguez everything...that Dr. Rodriguez said the Remicade would not be increased til another COLONOSCOPY WAS PERFORMED!!?!

YOU ARE KIDDING ME! HOW MANY TIMES DO I NEED A TO BE STUCK UP MY BOWELS! I THINK I HAVE HAD ENOUGH! (that was my fun vent sentence :) )

That is when I got mad and grabbed the phone from Mom. I immediately let the Nurse know I was a Nurse and that I wasn't playing. That Rodriguez was on OUR side...that HE WANTED the Remicade dosage increased and had been fighting some time to get it changed! I also explained to her about my visits with him. (the post before) So...I tell the Nurse as nicely as I can that I don't want to talk to her...I want to talk to Dr. Rodriguez. She held on a little while longer and she started going through my file...she and I were jibber jabbering and immediately she went silent. I knew that she had found something. After she went silent she said...I am going to page Dr. Rodriguez and tell him to call...he will get back with you. *Phone click*

So.....the day drug on. Andrew and I went to look at land...I stuffed my face with Phenergan and Percocets from the nausea that has persisted for 4 days and the pain that is never ending.

Wait. Wait. Wait. That's what we were doing! That's what we all do when waiting for those return calls!

Andrew then decided that since we hadn't eaten all day (and I sure don't know when to eat because I have no urge), that we needed to go get something. So we go get some food and sit down. The phone rings and it is Mom.

Mom said "Dr. Rodriguez called. He informed me that he was not avoiding calling and was not wanting to do another colonoscopy...he was wanting to go back through your charts. He said that it literally took him that long to go through all of yours. He found where Insurance increased your Remicade in August of 2011! He didn't understand how it had gotten overlooked...and is trying to figure out where somebody failed/messed-up. He asked when your next treatment was....so I told him in a few weeks. He said that he would call Curascripts (the company that ships my chemo) and have EVERYTHING straightened out by your March treatment!"

I just started BAWLING....I couldn't even say the blessing over my food (nor could Andrew)! Andrew just held me and I cried...he teared up...and we just felt so very BLESSED!  Now sure, I don't know whether the 10 mg/kg will make a difference, but I have put so much faith in that it WILL! Now I have been telling you all that I am at my last option and I am with medications....when we raise this to the 10mg/kg...we will be at the end of every option for Remicade.

Now with the Chemo being increased that means the chemo will be more potent. This next treatment will be very rough on me and I will have more anaphylaxis than usual, but I am READY!

I asked yall to pray on my last post for abnormal test results....well we got even better! The Lord performed another miracle! You tell me how a doctor and ALL of his nurses miss a NEW ORDER APPROVAL from an INSURANCE company! MIRACLE! People talk about the Lord healing people, how that is a miracle....we have to look at everything around us! There are miracles all around us! He is STILL the God who PERFORMS MIRACLES!

I know for some of you reading, you may not understand why I am so overjoyed, overwhelmed, and humbled. Just know that when you are at the end up your rope with your health and you have one little option left and you are reaching at it with all of your heart.......well when you grab a hold of it....it is indescribable!

I know that with the dosage being increased, it makes my treatments that much more serious. I just can't help but think this may be it. This may be the one thing to stop the sweats, stop the nausea, stop the pain, make me "me" again! I have so much faith right now....it is definitely not a mustard seed...more like an avocado seed!

I cannot thank you all enough! Thank you for praying what to others may seem like an odd request. Thank you for reading and knowing where I am at. Thank you for your support and love!

Like I said...some people may not understand why I am happy to get my chemo increased....I guess in reality you don't have to understand. Just know that God is an Awesome God! He ALWAYS provides at the perfect time! I love you all and thank you from the bottom of my heart for all you do!

I am praying that with this increased dosage I get some remission time from Crohn's! We had thought that Remission was a no no word for me....I'm going to think that isn't so! :)

Ready for all that the Lord has in store! If it is that this dosage doesn't work, I will STILL TRUST in HIM! If it is that this dosage does work, watch out world...remission Alli is on the loose!

Wednesday, January 4, 2012

Alli vs Rodriguez *DING DING*

So that whoever reads this understands how frustrated I was...I will go into very graphic detail and tell the entire story.

WARNING - If you don't want to know graphic details of Crohn's, if you don't want to read of nastiness, then I wouldn't go ANY further. Sorry...I have written many a time on here, that this is my blog, my testimony, and I want to tell the truth...so when I am healed, everyone can see how Great and Awesome and Mighty my God is! (Seriously though....nasty stuff, so I am sorry)


*The start of it all*

Well I guess I can say that everything started around December 22-23. Most of you know that I don't have an appetite. People can say what they want....that I need to do this and that, but when you have Crohn's, your stomach and intestines, becomes your brain. When it says don't eat...you don't, when it says eat...you do, when it wants this...you eat this, when it says eat that....you eat that. It's VERY specific. Ok....so I don't hardly eat....but also I can't help that. Well...stomach cramps and gas are normal with Crohn's, but shouldn't exceed a billion times a day. I will just say that the frequency INCREASED greatly. Then it started where I was literally dashing from the couch, tripping over the dog gate to get to the toilet as fast as I could. I would have diarrhea and then I would come to the couch and lie down. Then I would munch on something, and before I knew it, I was dashing to the bathroom again. This continued. As I continued to go to the restroom through I noticed changes. For one thing...the past year and a half my Crohn's has been on the other end of the Crohn's spectrum....I have been having the constipation and impaction. So when I went from that to the other it was a questionable change. (meaning impaction/constipation to loose stools/diarrhea)

Well changes just kept happening. I then noticed that I was having mucus and discharge. Everything was yellow and green....and worst of all I was not digesting my food. I was literally passing fiber strands. At times I would go to urinate and before I knew it I was doing the other without even knowing. At other times, I would find myself needing a bucket and I was so scared what happened back in March 2010 would happen again! Throwing up *you know what* at the same time your using *you know what* on the potty is NOT a fun thing. I would quickly down phenergan to avoid throwing up! It was getting ridiculous...I was using the bathroom more than I was putting food in my body. By the 30-31 I had gotten to the point where I wasn't even eating because there was no sense....all it would do was go right through me. Between the 22 and the 26th I was trying to see if everything would just settle. I was trying to wait it out and not just freak out over the changes. After that fourth day though, that is when the calling started! and by that time, I was calling because I was worried!

December 27th - Called Rodriguez's office. To get Rodriguez to call, you have to leave a message up front with the receptionist, who will then in turn send him a message. So I call and tell them my name, my number, and then *because I did NOT want to go into the gross details* told them in the note to type "serious complications from Crohn's Disease".

December 28th - Called the receptionist. I asked her if he had checked my message...she checked and said that Rodriguez had checked, read, and even called her, and asked a question pertaining to the note. She assured me that he would be calling me before the end of the day.

December 28th (after they had closed (5pm) which goes to answering service and on call doctor) -
I leave a message with the person answering...I tell them EVERYTHING up to that time, as well as all the signs and symptoms that I was suffering from. I stressed my worry about dehydration, and they said that the on call doctor would be calling shortly.

The on call doctor called...Dr. Dascher (sp?). I told him EVERYTHING. He said that he had looked over my chart and that I had a very hard case. He also brought up the fact that I did not just have Crohn's Disease, but Fistulizing Crohn's Disease. We talked about the s/s and then he agreed that it was not good. He said his first concern was that there was possibly an infection in my intestines (caused by Crohn's) and he was also concerned that there could be an obstruction or blockage (also that some stool and digestive fluids were being able to move, while others were being trapped). I stressed my concern about dehydration, and he said to hydrate myself as much as possible and try my best to STAY OUT OF THE HOSPITAL...because the next morning at 7am he would see Rodriguez and would tell him EVERYTHING that was going on...and then they would be setting up procedures and appointments to figure out what to do.

December 29 - Well I should have heard from Rodriguez since Dr. Dascher was "going to talk to him first thing that morning at 7am"...but I didn't. I decided to be nice and give him A DAY.

December 30 - I am boiling! I have literally been going nonstop to the bathroom for a WEEK + DAY now....not being able to take hardly any food in and if I was taking any in, it was going right out! I call the office that morning. I talk to the receptionist and she was amazed that Rodriguez had never called. She said she would make sure to get something out immediately and inform them of what was going on (the entire ordeal). Well later that day I went to Andrew's. I get a phone call from mom and Rodriguez DID NOT call, BUT his nurse DID! His nurse was not very nice either. When she called she asked mom..."Well what exactly signs and symptoms is she having?" Mom politely told her all the nasty and the nurse replied "Well if she is not bleeding from her rectum, and if she is not throwing up, it is NOT an EMERGENCY". When mom said that I about blew a gasket! For one, I DO BLEED from my rectum, but I thought that was NOT an Emergency! I think any of you who read the s/s know that what I was going through was an emergency...it doesn't take a rocket scientist to figure that out!

The nurse then goes on to say "Well Rodriguez is covering for six other doctors and this is a holiday weekend, couldn't you have called when it wasn't so busy." That was when mom got a little hot and said "My daughter has been calling you for almost FIVE days now...and her symptoms have been going on for over a week!" The nurse didn't say too much after, and set up the appointment for January 3 (today).

As most of you know, the next day I ended up having to go to the Emergency Room. I cannot explain the state I was in. It was so sad though...because I knew what I was feeling, and I knew I needed to go...yet, I've gotten to the point where I tell myself  "Oh, Allison, you don't feel that...that doesn't hurt...just believe it's not there"...I really get to where I can make myself believe I feel good...I've literally put a wall up with myself because of other people!



(New Years @ Jackson Hospital)

They pumped me up with Saline boluses at first, and then after the boluses, a constant saline drip, antibiotic drips, Solu Medrol pushes through my mediport, Lovenox shot to prevent blood clots, Demerol/Percocet for the stabs, cramps, and migraines! I was very blessed to meet Dr. Haa (sp?) and I was very impressed with his bedside manner, his knowledge of my disease, and his empathy towards me! He was very helpful and very understanding! I truly thanked God for blessing me with him, because Emergency Room visits are not the most memorable experiences...his however will always be remembered with positive thoughts!

so released and a bunch of blah blah blah.

Now for today - what you all have been waiting for! Sorry that I had to tell my book to get you here, but I figured you needed the truth of all of it...and facebook doesn't need to know all of my business! Those of you that really care will read this on here, and I want to be honest with you and tell the truth....it IS your business! so yay for you! lol!

*DUN-DUN-DUN-DUNNN*

Mom and I are sitting there anxiously awaiting Mr. Ponytail and he walks through the door. I quickly grab the scissors and chop it off! (ok...no this really didn't happen, but I was thinking it over quite a lot)

So he walked through the door and it was immediate tension. He knows me too well and he knew that I wasn't happy nor was my mother. He started off asking what meds I was on and what I was in for. I quickly started off asking about all the mishaps. About me calling him, him not calling,etc.

He said #1-that when I leave messages with the receptionists up front, I need to be specific. I was ugly and said...."what do you want me to tell them, that I'm pouring yellow, green slime and fiber out of my butt" (HAHA....SORRY I HAVE TO LAUGH) *he didn't look very happily at me and said* "No....you are a nurse still Allison, you know how to word everything, and you know what to say...be specific...they are not nurses, nor do they know anything about all of this...they have to be able to let me know whats wrong so I know what to call about. All I knew was that you called and needed me to call you." (I don't know how much of that I bought. Also, I did tell him that I told them to write the serious complication thing) (but I will halfway buy that)

He said #2- that Dr. Dascher told him that he had talked to me...and that everything was ok! He quickly saw the look on my face on that because I called bluff! I said ummm...noooo! and then I told him the conversation. He then said that he would take care of that and would have a talk with Dr. Dascher!

So moving along, he was glad that I went to the hospital and he was happy with the meds they gave me and the way the Doctors handled the Crohn's.

Next, he got on to me. He began on the weight thing again. He knows my appetite and he knows that I don't eat hardly a thing. He understand to a certain aspect I cannot help that...and with being my Dr for 2 years he knows we were going to have to go where most Crohnnies don't. He told me that I had to start eating - so he said 6 small meals a day. I about started crying, or wait I did. (Until you have this disease you don't realize how hard it is to eat....I HATE eating. It's a chore, it makes me feel bad, and I can only hold so much....if I try to take one more bite after I'm full, I will throw up.) So he decided it was time for medicine. He said there were two types of meds he could give me...they are medicines that you give to cancer patients when they cannot eat or do not have an appetite anymore. He gave me the lesser one because he said we weren't going to go with the drastic one yet. He said that if I cannot do the six meals on my own, then I needed to start the medicine. He said that it would make me very drowsy and sleepy, but that if I'm not going to increase my eating, then it's what we are going to have to do. He also said that I would more than likely get use to the drowsiness with time.

Another thing I brought up to him was the erythema nodosum. I confronted him about me calling two months ago when I had another erythema nodosum outbreak. When I had called and left message for him to call about it...he never did. Instead his nurse called and said "he said you need to go see your PCP" This made me mad, because Erythema Nodosum is an extra-intestinal symptom of Crohn's....it is my gastros job to treat it! Also...when I had my outbreak the last time, he said "If this happens again, we are going to have to start you on the only medicine for these outbreaks....it is a leprosy medicine".

He didn't say much and kind of changed the subject and then was like "well I am going to write a prescription...that way the next time you have an outbreak, you can fill it and take it"

On that note, isn't that pretty neato...LOL! Leprosy medicine...who would have thought there would be leprosy medicine around still! He did say however that the pharmacist would probably have to order the stuff since it was rare! Oh boy - I'm becoming a rare jewel! LOL! (Ok...I'm stopping now :) )

There was a lot of changing subjects, and a couple of angry parts between us, but all together, he did do a good job and I was SLIGHTLY SLIGHTLY proud of him answering himself and doing the few things he CAN do for me!

Now on to the last subject...the one I need yalls help with (if anybody has read all of this)

As many of you know....and as I have written a billion times before...the two blood tests that you can check to see if the Crohn's is in control or not is a Sed Rate and a C Reactive Protein. Like I have written before as well, these tests can be FALSE for Crohn's patients. You can be in a flare and the labs normal. Rodriguez had told us about this in the beginning. If I'm not mistaken also...when I had my colonoscopy and was all nasty inside and diagnosed with Crohn's...my labs were normal. But then again, my numbers have always been normal when it comes to those labs! What I'm trying to say is both of these labs with Crohn's can be very FALSE...so you can never judge where you are with your Crohn's by them.

Well...the problem is we need these tests to be elevated so that we can get my treatments either 1. moved from 8 weeks to 6 weeks, or 2. changed from 5mg/kg to 10mg/kg, or 3. BOTH!

Now I will say that Rodriguez has been busting his butt to get my Remicade treatments increased and cut back, but insurance will NOT let him because they want to see labs!

Mom brought all of this up again to him and got emotional...she told him how Mrs. Sharon's son (people we know) literally almost died from the Crohn's (just never got better and kept getting worse) and finally his labs increased and they were able to change the treatments...since then he has been a new child! When his mom talks about it, it will make you cry. She literally thought she was going to see her child die...and then when the treatments changed, she said it was like night and day difference! He lives a normal life now! So mom truly believes if we change mine, I will get better! Rodriguez went over it with her again, and we all got frustrated!

He said, "I know she is sick, that she isn't better, that her Crohn's is not controlled, that her signs and symptoms show she is not better."  He then said "and I'm the doctor knowing all of this...but it doesn't matter..." then he went on to say...The thing is you have your insurance people sitting behind computers looking at numbers wanting them to be elevated...if they are not then it's not good enough and they will not allow (or pass/ok) the doctor to change dosage or frequency." So then mom got upset at insurance!

After he left the room I just sat there and looked at mom. I was like you know what this is....a BIG vicious cycle! The infamous lines "You are very sick, oh wait, there is nothing we can do for you."

Then I started getting pumped up about raising awareness. I mean come on. I have a disease...I have exhausted every pill, treatment, and option. There is no more for me to try...there is nothing else we can do, and yet I have to live with this for the rest of my life! I can handle this because I have Jesus by my side, and I know that He wants me to carry this burden for right now!

What I CAN'T stand...is that others have this disease. Sure, not everybody has a severe case like mine...but still. Eventually everybody is going to hit a spot with this disease where they feel stuck...and for those in my boat they are TRULY stuck! We have got to raise awareness, we have got to start telling others that this disease is serious, that it is debilatitng, that it is hurting people, taking there lives away, and that we NEED A CURE!

Ok...so I was having my boosting up time :)! Now on to your help again...this is a WEIRD prayer request, but please.....PRAY THAT THE SED RATE AND C REACTIVE ARE ELEVATED! We NEED the treatments increase or cut back...we have GOT to kill my immune system more! My white blood cells are still attacking me pretty good so we need to wipe them out more! So yes...pray for abnormal labs, lol! It will be a great help to us and my doctors!

Thank you for reading, I know it was ridiculously long, but if you know me, I tell it all and tell it just like it happened! I'm like a bad storybook! LOL! I love you all and thank you for your love, prayers, and support! God is always right beside me through it all and I thank Him for loving me past my faults and failures! My God is an Awesome God! and I know without a shadow of a doubt, He could speak "Be Healed" and my body would be transformed! I know it! I also know that as of right now He has called me to be His soldier, He has called me to do a mission, and I must complete my mission! After I have completed I know He will reward me....if it is in Heaven, then it is in Heaven! I know where I will be one day, and I know where I will spend my eternity. If an eternity in Heaven rejoicing with my Father means a life on earth with pain and nausea, all of this is worth it and more!

I'm going to keep on fighting! I love you all so very much! God Bless!

Saturday, September 10, 2011

Erythema Nodosum - Forgot to Post and Place Pictures

I was looking through pictures that I uploaded from my camera to computer tonight and was placing them in a new file for September. I then went back to my August album to scroll thru and look. As I was scrolling up, I saw the pitiful pictures of my legs and immediately was disappointed! Why? Because I ALWAYS try and post pictures with my posts if able!

I do this for a few reasons. One reason is the same as I had posted earlier, I want y'all to  experience ALL of this with me! Christ has called me, just as He did Job! I want you to feel what I feel and see what I see...because as my brothers and sisters in Christ you also are going through this with me! As prayer warriors, supporters, friends, etc.! We are a body as He tells us! It is important to me that I hold nothing back from you - just like a testimony! So know that I love you each very much!

Another reason I like to place pictures with my posts - I CAN NEVER forget! I wish I could have a picture for every post, but that is impossible! Some things you just can't photograph....you have your subjective symptoms and objective symptoms. Subjective symptoms are there, but others cannot see them, feel them, hear them, and so on. The way you prove a subjective symptom is through something objective. Example for ya:

*Pain - My doctor can't see my pain, or feel my pain, or hear it, so it is subjective. He can take my blood pressure however and see that it is elevated above the roof...that in turn takes my pain from subjective to objective.

That is why blood pressure, temp, pulse, xrays, blood work, etc is SO vital with the medical field...if something is subjective, you HAVE to have a way to turn that SUBJECTIVE into OBJECTIVE! I know that was a nursing lesson, but I'm trying to show how nice and how important it is to have EVERYTHING that IS objective documented! That way YOU and I can ALWAYS have proof and never forget!

*So inside tip for my readers...if you EVER have anything unusual with your body...ANYTHING -swelling, discoloration, mole, capillary, bump, bite...TAKE A PICTURE! If it goes away you will have the picture and no harm done!  BUT what if it comes back!? You will be ahead of the game...you will then be able to continue monitoring - as you continue taking your pictures you can see how the problem is progressing and how it is changing in shape, size, etc.! Just felt led to share this and tell yall! Your body is YOUR body! Always be in tune with every little dot and line you have! You are your BIGGEST advocate! Please do this for me...promise you will for me*

So back to that reason...as I said you will NEVER forget! You have that visualization in your mind...not only for you, but also, to take and show your doctor! I have written before that these treatments really do mess with my memory so the pictures are a life saver at times!

I guess my third reason for posting the pictures with the posts, is so that if I meet another doctor, I can always scroll back through and write down things that I have forgotten about and print the pictures out! My blog has actually come in handy a few times for some of these new doctors, so it's been a blessing for me when it comes to my memory!

So...back to my legs...in the last post I wrote about me having Erythema Nodosum, and I had also written about this problem on facebook asking for prayers!

You already know that it is not a good sign of Crohn's Disease - doctors raise their eyebrows up and think to themselves "ohh....you are to that point...". A little more about Erythema Nodosum and Crohn's - First, many CD victims never experience this outbreak or even have a clue it exists/can happen with their disease. Second, it only happens to CD victims that have a very severe case and even with that the % of having an outbreak is very low. Third, it is an extraintestinal symptom, so you are dealing with ANOTHER symptom besides all the many digestive system ones!

From reading the last blog post, you ALSO know that this symptom/condition happens with Sarcoid - the disease that we are almost positive I have! After the outbreak I thought it was so ironic...the first time I saw Dr. Hecker he had asked if I had ever had an outbreak/rash of bumps/nodules on legs. I told him "No", and within the next few days *BAM* it happened. Now yes, I will say as I always do...and yes it will sound funny saying it....but "God is GOOD!"  It was just another symptom to validate and help get us to the sarcoid, and can I say RIGHT IN TIME!

Moving along to the outbreak and duration. From the time the first nodules appeared to the time the last one was fully healed, that total length - start to finish was close to 4 weeks.

The evolution of Erythema Nodosum - The first bumps/nodules appeared, and I guess with me being a nurse and knowing my body, truly an alarm went off in my head. Most people would have thought a mosquito bite, and that is EXACTLY what the first nodules will look like! Around the nodules are perfect red borders that surround them completely...so you have a red inflamed circle, with a raised little bump in the middle. The first physical sensation dealing with the outbreak was PERSISTENT ITCHING! I promise...I wanted to take a bristle brush and just rake my legs with it! Now not all were the same, it was as though they went through stages. For many of the little mosquito look-a-like bites, if you pressed them, it LITERALLY felt like a marble under the skin. Hard as a rock and very painful. Some places were pustules *you could actually see the pus through the bump - they were also PAINFUL and itched the most* Now the ones that I said were in the latter stage, they actually had gone from nodule to pustule to actual ulcer *if you have had an ulcer in your mouth, it was just like that but much smaller...they did grow a light scab, so that was nice that it just wasn't openly exposed for long*. The itching would become terrible when new ones would appear, and the pain would not stop because it was present with all the inflammation and knotting of my tissue.

Out of that...the funniest thing I can remember was not being able to shave my legs! My legs were itching and hurting so bad one night, and I wanted air to be able to get to them because with inflammation that in depth...your skin is on FIRE! So I placed my legs in Andrew's laps and he pulled up my pajama legs so the air would hit them....let's just say I had BIG FOOT LEGS! Come on now...I couldn't shave with all these scary little things! I poked my lip out at Andrew and then smiled and said "SOOOOOWWWWWY!" He is the sweetest and just said "it's ok baby!" what he was really thinking was *Oh dear Jesus...make these things better...her legs look like mine!* LOL!

I only took pictures I think three days, and they were back to back! I wanted to document better, but along with other reasons, my camera has just about bit the dust, so it won't focus very well....so the pictures aren't what I was hoping for, but they at least showed red dots! I was hoping to be able to differentiate between the nodules, ulcers, and pustules...I can when I zoom and scroll up and down looking...but I highly doubt you care to scope my legs that nicely!

Anywhooo....Dr. Rodriguez wanted to start me on leprosy medicine if they didn't get better, but as you all know HE NEVER CALLED BACK when I called him the second time! He was *soooo worried* when I called that first time, "start Benadryl immediately...we HAVE to get your body calmed down, REST....do not do much at all...THIS IS SERIOUS" *a bunch of yadda yadda if you aren't going to call me back and they already were ten times worse* Most of you already know he and I have a love/dislike relationship anyways!  Ok...now to the pictures!

One more thing - I was VERY disappointed, because I was hoping for complete healing. That most of the nodules would just go away nicely! My legs definitely are scared now...to the point the doctors were examining them and looking at where the inflammation was all located! I would put cream on them, but these are not the type of scars you can put Mederma on...they are dented in the skin and darker than surrounding the skin! *booo* I could be polka dot legs woman!? Does that sound like a super hero?


Day One - You would expect maybe just 1 big one for the first day or two!

Of course not me, I'm ALWAYS a record breaker, I HAVE to go ALL out...lol!


Day 2 : ALREADY popping up everywhere! This is my Left Leg in this picture
which was the worst between the two legs.Remember to try and look close -
if you see places that are circular and white,that is where a new one will pop up!
 When I would go to bed, I would look over legand see where I would have my
marked spots, and sure enough, they would be there by morning.


Day 2 : Just a close up, so you can only see a few. In this one they
are mostlynodules, but I can see two pustules that were ulcerating.
The one at very bottom left and the one up towards  mid right.


Day 2 : This was the only up close pic I was able to get that was kind of focused.
If you look to the far right. That one was VERY painful. Look very closely and you can
see how the center of the nodule is shiny and is raised - it was pustule, along with the
one to the far left. These two turned into fairly decent ulcers.


Day 3: For only three days, I couldn't believe how many I already had!
I'm sure you can visually imagine just how bad after 2 - 2 1/2 weeks!
In this one you can even see more white spots where new ones were coming up.


Day 3: I wish I would have continued to take pictures to show the progression, but between
the itching, pain, and continuous multiplying of them - not to mention after 1,2,3,4 weeks
of NO SHAVING....I was somewhere between frustration, embarrassment, and just
EXHAUSTION! Like I said, wish would have taken more, but it's a-okay with me!



Day 3 : OH MY GOODNESS! So I was about to post, and was like hmmm...
My brain, forgot, as I was warning y'all about. Tada, I did have ONE picture of
an ulceration with the Erythema Nodosum. This was on my left? ankle.