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.