If this is the first time you've read my blog, I'll give you a briefer, to bring you up to speed. If you already know my history, skip to the next paragraph. I had Cushing's disease, probably all my life, but the symptoms kicked into a higher gear when I was around 23, which was 17 years ago. In 2007, they really kicked into high gear. I went to CA to see a Cushing's specialist and 9 months later, was diagnosed with Cushing's disease. I had pituitary surgery to remove my 1/2 mm. tumor. I had a brief remission (about 3 months) and started testing again. I had my adrenals removed, which is a bilateral adrenalectomy, or BLA for short. That surgery was in May of 2009. This means I am forever prone to having an adrenal crisis.
I've been crusing along really well since my BLA, until Oct. 27, 2010. First, lets back up a bit. I had my gallbladder removed on Tues., Oct. 12, 2010. They found an umbilical hernia and repaired that at the same time. It was incarcerated, which means "something" was going through the hernia. In my case, it was fat growing through. The fat was removed and the hernia repaird. I had noticed after this surgery that I had some urinary urgency. I would not feel like I needed to "go", and then all of a sudden, I would need to go, and it was "right now"! I figured with all they had done, and filling my abdomen with air, my bladder may have shifted or something. This was the ONLY symptom I had. No burning, no dark urine, no foul odor.
Fast forward to Tues., Oct. 19th. My husband left for Belgium on a business trip. No biggie. He's been on trips before and I've been fine. I'm never totally by myself. I have my kids here, and my cousin close by. I got my flu vaccine on Friday, the 22nd. I think it was the next night, one of my kids had the flu! Go figure! Since my hubby was gone, I had the honors of cleaning up the mess! I washed my hands a lot and used hand sanitizer and Lysol. I even had my son drive me to Wal-Mart to get a spot bot to shampoo the carpet, and minimize my contact. It didn't stop me from getting the flu, and my shot had not really had time to work (if it even covered this particular strain).
Now, we will fast forward a few days to the morning of Oct. 26th, which was a Tues. morning. It's now 2 weeks after my gallbladder/hernia surgery, and one week after my husband left. I was going to have an open house for a new business on Tues. night (this night) and Thurs. night. I woke up Tuesday morning feeling sick to my stomach. I thought to myself, "Oh great! I'm getting the flu!" I took extra hydrocortisone, like I do when I'm sick, and I felt better, and actually felt fine until about 3 PM. I had run out to a store to get a few things. While I was there, I noticed my heart felt like it would speed up and slow down. I tried to smile at a child who passed me, and my smile felt crooked and weird. I knew something was wrong, so I got checked out of the store and hurried home. I only live about 2 miles from anything in our town, so it's not a long trip. About 5 min. and I'm home. I took more hydro. I have no recollection of how much over the course of this day. I just know I took more. My normal dose is 10 mg., and I'd take 5 mg. more, or 10 mg. It helped for a while, but then I'd feel my heart start speeding up and slowing down again, and I knew I needed more hydro. That was my only symptom that something was wrong. It ended up that nobody showed up for the open house this night, so my cousin, who was with me, and I, closed up the open house and we drove to her house, which is about 5 or 6 houses away. We ordered some supper. I noticed I was speed talking, but didn't think a lot about it. I was excited about my new business. Right before we left my house, I had the urinary urgency again. I told my cousin I'd been having that since surgery. When I was sitting at her house, I started not feeling good again. I started putting pieces of the puzzle together. I'd been taking more hydro than normal through the day, even more than when I would normally get the flu. It would help for a while, then I needed more. I had the urinary urgency, and had just had gallbladder surgery 2 weeks before. It dawned on me that I probably had a UTI along with the flu! So, we left her house, and went back to mine. I decided I'd just use my shot and stress dose instead of taking the med orally. I felt so much better, so I sat and talked to my kids for a while, to see how it would go. My oldest son, Caleb is 18, and my kids are fully aware of what a crisis is. I felt great, for about an hour, and then I had that sinking feeling again, and my heart was speeding up/slowing down. I told him we better head to the ER so I could get some IV steroids and fluids. I was obviously headed for a crisis. I didn't think it would be a big deal. It wouldn't have, if they would have treated me properly when I told them to!
We got to the ER around 1:30 AM. I gave them my crisis letter. I couldn't find the one from Dr. Friedman, so I took Dr. Holmes that I still had. Even though he is not technically still my doctor, the rules are still the same! I also wear my medic alert bracelet and it has it spelled out on the back, what they are suppose to do! It says on the front:
Grace XXXXXX
NO ADRENALS
ADRENAL CRISIS
My endo's name
My endo's phone number
On the back it says:
100 mg. solu-cortef
in 50 cc of NS in IV
over 15-30 min.
PCP's name
PCP's number
I checked in, and they told me to have a seat. They called me back to triage after 10-15 min. I went back to the waiting room, to wait for registration. I exchanged all of the ins. info. I waited again. I don't know how long between all of this. I finally got back to see the doctor. He was nice, but not very knowledeable about adrenal crisis. He said I probably had a UTI brewing from the gallbladder surgery, and was going to send me home with an antibiotic and an antibiotic prescription. I asked if he was going to check my electrolytes. He didn't see the need. I told him I didn't feel good, and didn't feel comfortable going home without knowing my electrolytes were in the right ranges. All this time, my body was using up the stress dose shot I had taken. He asked me which electrolytes should be checked (DUH!)! I told him mainly sodium, potassium, and magnesium. He said ok and ordered those. I had given them a urine sample that was sent to the lab. They came in and drew my blood and sent it off to the lab. He came back and told me my urine looked fine, but they were going to treat me for a UTI anyway, as that was the most likely culprit. He decided he would go ahead and treat me as if I were in a crisis. He said something about giving me steroids. They started an IV, then we waited. We were waiting on the steroids and I was getting loopy. I was talking to my son. I knew I sounded loopy. I felt loopy. At one point, I felt like sitting up on the bed and yelling "Whoo". I told my son this, and told him I was getting loopy. I asked him if he notice. He said, "Mom, you've been getting loopy for a while." I started telling him I loved him and I was sorry he had to go through this with me, then I was crying, then I was laughing because I was crying. Caleb said, "I'm going to go see where those steroids are!"
Right here, it gets really confusing because a lot of things happened at once. Caleb left the room to get the doc and find out where my steroids were. He told the doctor, "I know my mom, and she's not acting right. She's getting really loopy". The doc said he didn't want to give me my steroids until the results of my blood work came back from the lab. There was a nurse standing there who looked through a pile of lab papers. She asked my name, and found my labs in the stack. The doctor looked at them, and said they were fine, I didn't need my steroids. Now, mind you, these were drawn not too long after getting into the hospital and reflecting my stress dose shot of 100 mg. The doctor told my son I'd get better since my labs were ok, and he didn't want to give me the streoids because in his words, "She doesn't need them". After the doctor told Caleb my labs were "Fine". Caleb said, "Well, she's not fine." The doc threw the labs up in his face and said I was fine (again). Caleb told him if I was not acting better in 5 to 10 min. he wanted the doctor to go ahead and give me the steroids. He was trying to work with the doctor, but he knew what I needed!
In the mean time... I was in the room alone, and I started sinking quickly! I yelled out for Caleb to come quickly and bring my shot! I didn't know what all had been happening out at the desk. I lost control of my bladder and peed all over the bed. Caleb tried to hand my emergency kit to the doc and he told the doctor to give me my shot. The doctor said, "I'm not giving her that shot! She doesn't need it!" He was telling me that there was nothing wrong with me. He said I was healthy and that I was just having a panic attack! I told him I DID need my shot, and to please give it to me. He refused. He said again, that I didn't need it, and I was "Just having a panic attack". I told the doctor that he must want me to die, and that he was killing me! He said I wasn't going to die.. etc. Caleb was trying to ask the doctor if it would hurt me if I had my steroids. The doc wouldn't answer him. He just kept saying I didn't need it. Caleb said, "Oh, forget this!" He whipped out his cell phone and called my mother-in-law to ask her what to do. She must have said that same thing as Caleb, to find out if it would hurt me to give it to me and let me do it myself. Caleb could not get an answer from to doc, so he stepped close to make eye contact with the doc and ask him again. The doctor went off, and jumped back and yelled, "Call the cops! Call security! This kid tried to come at me!"
At this point, the whole event was extreme stress on me, and sent me into a seizure. I peed myself again. My head slammed back into the bed and my back arched off of the bed. The doctor didn't even pay attention to me at all. Once the cops took Caleb out, the doc walked out of the room and left me. (Thank God for my nurse! She was my angel! She stayed with me. She told me the docs were overboard and she knew I needed my shot!) As my body arched, I felt my body pulling to the right. I knew I was about to die. I could feel the tug of my spirit trying to leave my body. The Lord and I had a quick talk! I told him not now, not like this! Not with my husband in Belgium, my kid in jail (he didn't go to jail, but I didn't know that at the time. I just knew they took him away.) and not with my other kids at home! They need me! I asked God to give me clarity of mind and not be loopy and let me reason with this doc who was being unreasonable!
I snapped out of that seizure and back to the room. I could talk again. The doctor came back to the room and I told him I was asking him one last time, if he would help me. I said, "Sir, do you not agree there is something wrong with me? I was not like this when I came in. Something has changed. I am loopy and I have no control over it! I have peed myself!" He said yes, I was different, but it was because I was having a panic attack. I said, "Ok, fine. If this is just a panic attack, then give me something for the panic attack. I've never had a panic attack before, but I'm telling you, I NEED my steroids!" He wouldn't give me anything! Nothing for a painc attack, no steroids, and he didn't even want to give me the antibiotic he was going to send me home with. I had to beg for them to give me that pill, since he wouldn't give it to me in my IV! He said, "It's not going to work that fast". I said, "I know, but it can at least START working while I lay here and rot! You must want me to die!" He said he didn't want me to die. I said, "Yes you do, because you are killing me! I need my steroids! I have asked for help and you are not helping me." I asked him one last time if he was going to help me. He said no, I didn't need anything. I said, "OK, fine! You get out of my face! You get me dismissed from this hell hole! Don't you come back in this room! You send someone else to do it!" My nurse heard everything! So did the security guard who was standing outside my room! He did let me swollow that one antibiotic pill before I left, and he sent me home with a prescription for antibiotics.
They dismissed me and my nurse walked me out toward the lobby. She had to hold on to me to steady me as I walked. I got to the lobby and was so out of it, I started to walk out of the hospital, and realized I didn't have a ride. The nurse had told me I could call family from a phone. I turned around and saw people at the desk. I walked over and told them I needed a phone. The lady pointed toward the area where the phone is. She said it was down by the vending machines. I started walking in that direction and went past the phone and vending machines. I started back through the ER doors, and thought, "No, I don't want to go there! They tried to kill me! I don't want to see them again!" I turned around and saw the phone on the wall. My hands were shaking as I lifted the phone. My eyes were blurry. I couldn't remember phone numbers. I started rattling off numbers in my head and came up with my cousin's number. I walked outside and sat on a bench, waiting for her to come get me. My nurse had given me back the emergency papers I took in. She put a sticker on them that had the doctor's name, and the date I went in. I didn't remember this. I saw the papers on my fridge a week later, and wondered where they came from. My cousin told me I brought them home from the hospital that night.
I'll interject one point here. I had a friend in CA that Caleb found online when he got home. The cop was really nice and didn't take him to jail. He told him to go home and get help for me. Caleb found a friend of mine online. She helped him try to page my doctor in CA, and then she called the hospital herself. She spoke with the head nurse. She told them she was a patient advocate for me. She told them I have no adrenals, and I had a medic alert and a crisis letter, and that they needed to give me my steroids and an antibiotic. The nurse told her that is not "their" protocol! She said the doc would decide what I needed and that I didn't need my steroids. I was "just having a panic attack"! Again, they refused to listen to anyone! The doc told me that night, that there were 4 medical personel on staff, and they all decided that a panic attack was my best diagnosis!! UNBELIEVEABLE! I was in that ER from around 1:30 am to 6:00 AM, with no help whatsoever!
So, I got home, and gave myself another shot, and went to bed. I slept 6 hrs. and then got up and called my PCP. They got me in at 3:45 PM. While I was there, and told him what had happened, I had to stress dose with 200 mg. The 100 mg. was not enough, and not lasting! I did 200 mg. in about a 15 min. time span. When my doctor walked out to call in a direct admit for me to St. Ann's hospital in Westerville, OH, I had to use my second shot. I sent my son after the doctor and I laid down on the table. Everyone in that office came in to help me! They started oxygen, took my blood pressure, etc. My nurse practitioner told me later, that I was struggling to get my thoughts together to talk to them that day. They called the squad to get me to the local hospital that tried to kill me less than 12 hrs. before. I needed immediate help, and that was the closest hospital. I was to go in and get my IV, steroids, and antibiotic started, then go to St. Ann's once I was stable. My PCP made copies of my mediciation list, 2 emergency letters (one from Dr. Friedman, and one from Dr. Holmes), he made a copy of my surgical report from Dr. Chiang, stating that my adrenals had been removed. He sent all of this to the hospital with me, gave my son a copy, and he took a copy himself! When the squad arrived, he told the EMT'S that I was his patient, and I had no adrenals. He told them this was not adrenal insufficiency, this was an ADRENAL CRISIS! He told them I was to get my fluids, steroid, and antibiotic STAT when I got over to the hospital. He is just a few businesses down from the hospital. He followed the squad to the hospital from his office! He walked in behind us and gave the ER staff my orders, told them what to do, and left. I don't know exactly what he said to them, but I know he told them to get this stuff started and take care of me. At the same time, the EMT's were handing me off to the next ER doctor.
This guy says to me, "Now honey, it's gonna be about 30-45 min. before we can get to you. We had a bad wreck and some head trauma's and some cardiac patients come in". I sat up on my gurney and said, "SIR! Do you not understand what STAT means?!!? You are a doctor and you are suppose to know this stuff! STAT means do it RIGHT NOW, not in 30 - 45 min.! I don't have that long to wait!!" I told them the ER had tried to kill me when I was in there earlier and I'd been in a crisis mode all day. He said, "Just calm down. We will get to you as soon as we can." They stuck me in a room and left. A lab tech came in and started asking me what kinds of medicine I take. I said, "I don't have time for this! My doc sent that! Find it!" He said, "I don't see it anywhere. Can you just tell me what all you take?" I said, "FIND IT!" I think I passed out after that. The next thing I know, the doctor shows up. He said, "Now honey, tell me what happened over the last 12 hrs. or so." I touched his hand and said, "Sir, please know I'm not trying to be obstinate. Once I get my meds, I'll tell you anything you want to know." He tried to talk to me some more, but I shut down. I chanted, "IV, steroids, IV, steroids..." I don't know how many times I got it out before passing out again.
The lab guy came back in at some point and wanted to draw blood. He said, "Bad news! Your veins have collapsed!" I thought, "Gee, ya think I'm telling the truth now?" I couldn't talk. He poked and got "some" blood. He said he hoped it was enough, and ran off to the lab with it. He came running back and said, "Bad news! Your blood is a mess! You are septic! We need to get atrial gasses!" I thought to myself, "Oh no! This is going to hurt!" I've heard that is a painful procedure. I remember a nurse coming in to help the lab tech, since my veins were collapsed. She picked up my arm and it was limp and flopping everywhere. I had no control over it. I never felt the first poke from the atrial gas draw. I don't even remember them doing it. I think I passed out again! The doctor came back in at some point and asked ME how much steroids I WANTED! I was loopy and got so excited when he said "steroids". I said, "OH... let's see... 100 mg. is the normal stress dose, but I had 200 mg. at my doctor's and that wasn't enough because I'm really sick. Maybe we should start with 300... no, I'm already behind, maybe 400... maybe 500... Oh, I don't know. You just pick something. Anything is better than nothing." He ran to the door and whispered something to the lab tech. The rest of the night is pretty much a blur. I remember that they FINALLY let my family come back with me. At this point, I couldn't really see them. I could make out the shape of their body and color of their clothes, so I knew it was them. My cousin thought I was sleeping a lot. I was in and out of consiousness! She said I would talk to them and I made sense, so they thought I was ok. I gave my son detailed instructions on what to do with the other kids, but I didn't remember it! The nurse came back to my room around 10 PM or so, and told me I was stable and they were going to dismiss me! I had enough sense to know I was not stable. I told them they were not sending me anywhere until I had my "escort" (meaning squad) to St. Ann's!" He said, "Who arranged this? When did this happen?" I said, "What is your people's problem?!!? My PCP arranged this at 3:45 PM! I was suppose to just get stablized here and go there!" He said, "We didn't know about this." I said, "Get out to your desk and FIND MY ORDERS and I'm not going ANYWHERE but in a SQUAD to ST. ANN'S!" I lost consiousness again. Any time I had to exert myself at all, it took everything from me. The next thing I remember was that they said my ride was "here".
I got into the squad and they took care of me! It was Critical Life who was taking me! I don't know what those men looked like, but they were saving me! I remember the one man saying to me, "Hold on, we've got you now! We've got you on bolus". I said, "Wide open." They said, "Yes, that means wide open! We've got it coming to you as fast as we can!" I heard him say to the other guy, we better get the defib kit ready, just in case." I thought to myself, "Yeah, I'm pretty close to dying! So much for "stable"!" I don't remember much of anything else. At one point, they asked me if I knew where I was suppose to be. I said, "St. Ann's". There has been question if I ended up at OSU in between hospitals. The squad report says I didn't. Another friend had called my hospital and was told I had been taken to OSU. A few days after I found this out, my doctor at St. Ann's came by and asked me if I went to OSU between my local hospital and St. Ann's. I said I didn't know. So, there is still confusion about that. He must have read something on some report that made him think I went to OSU as well. During the ride, I tried to open my eyes once, and felt like I was going to puke, so I closed them. As long as I kept them closed, I didn't feel like puking. I never once puked through this whole crisis!
From there, the doctors at St. Ann's told me I was in ICU for 2 or 3 hrs. so they could get me stable! Yet I was supposedly stable at my local hospital who was about to send me packing and send me home again! I don't remember any of that! They had to give me 200 mg. every 6 hrs. for the first day, then we started to decrease my dose. I was in the hospital from Oct. 28th (I got in there just after midnight) until Nov. 2nd. My legs were extremely weak. Probably a combination of the crisis, then high steroids, then the wean. I'm now going to physical therapy 2x a week, to rebuild my muscles. My hips are extremely weak.
Before I left the hospital, my doctors told me, "Honey, even though you know we told you that you were in septic shock, you don't even begin to know how bad you were!" So much for being "stable" at the other hospital! I am still waiting for ALL of my records to come in. I have some, which have incomplete reports. Only told from their side of the story. I know that once I was stable, and able to drink, they made me drink potassium from a cup, while they were also giving it to me in my IV. That's how bad I was! They don't make you drink it while it's coming in your IV, unless you are EXTREMELY low! I continue to need the potassium, so I wonder if my kidneys took a pretty hard hit from this crisis. More tests to follow!
Sunday, November 21, 2010
Tuesday, October 19, 2010
Scentsy!
I'm so excited! I love for my house to smell good! I don't like the soot from burning candles, and the really good ones with a lot of fragrance are really expensive, and don't last that long. Scentsy is the perfect solution! I was going to order some just for myself, but decided I should just get the whole kit and become a consultant. It will be a fun product to sell. I love people! I love being with friends and having a good time. I've also been trying to think of what I could do to make some extra money for us. That's hard when you are a stay at home, homeschooling mom that's recovering from a disease, and has sick kids! Again, Scentsy is the perfect solution. I can do it in the evenings, when my husband is home with the children, and it gives me some time away, to relax a bit and have some fun, while I'm making money!
Saturday, October 16, 2010
Gallbladder is gone, so is hernia
I had made a post, but don't know what happened to it. I was so tired I didn't have the energy to start over!
So, here it is. I had my gallbladder removed and they found my hernia and repaired it as well. The hernia repair is the part that hurts. The holes from the gallbladder removal don't hurt, but my belly button is SO sore from the unbilical hernia repair. It was incarcerated, and in my case it was fat that had filled the hernia and grown down through it. Better that than intestine! Now I have color pics of my insides for that too!
My girdle has been my best friend lately. It helps to hold my belly in, and the weight of it doesn't tug on the incision as much. I've been sleeping a lot! If I didn't take pain meds, I couldn't sleep, and if I take them, all I do is sleep! Sleep is good when you are recovering from surgery though. I had surgery on Tuesday, and this is Saturday. Today, the pain is not as bad. I've went a long time without a pain pill today.
The best part of all of this is, I look like I got a mini tummy tuck. To fix that hernia, the doc had to pull fat in and sew up the hole. I wish she could have just done the whole thing and be done with it!
No more pain from my gallbladder, so that's a blessing. Just dealing with the hernia pain. Oh, one other thing. The surgeon didn't use mesh. That means I have a higher chance of it happening again, but she said the bile not being sterile could cause problems for that mesh and it would have to come back out, so she opted to not put it in. Hopefully I won't have any more trouble from it.
That's it till next time.
So, here it is. I had my gallbladder removed and they found my hernia and repaired it as well. The hernia repair is the part that hurts. The holes from the gallbladder removal don't hurt, but my belly button is SO sore from the unbilical hernia repair. It was incarcerated, and in my case it was fat that had filled the hernia and grown down through it. Better that than intestine! Now I have color pics of my insides for that too!
My girdle has been my best friend lately. It helps to hold my belly in, and the weight of it doesn't tug on the incision as much. I've been sleeping a lot! If I didn't take pain meds, I couldn't sleep, and if I take them, all I do is sleep! Sleep is good when you are recovering from surgery though. I had surgery on Tuesday, and this is Saturday. Today, the pain is not as bad. I've went a long time without a pain pill today.
The best part of all of this is, I look like I got a mini tummy tuck. To fix that hernia, the doc had to pull fat in and sew up the hole. I wish she could have just done the whole thing and be done with it!
No more pain from my gallbladder, so that's a blessing. Just dealing with the hernia pain. Oh, one other thing. The surgeon didn't use mesh. That means I have a higher chance of it happening again, but she said the bile not being sterile could cause problems for that mesh and it would have to come back out, so she opted to not put it in. Hopefully I won't have any more trouble from it.
That's it till next time.
Thursday, October 7, 2010
Updates! Updates!
Ok, I admit it, I'm terrible at blogging! There is just too much going on all the time! I'll try to do better, but I'm not making any great promises!
Since my last update, I made a trip to CA with the 2 oldest kids. We had a good trip and the good doc we went to see felt one of the children probably has Cushing's, and the other one might too. Acromegaly for Caleb is up in the air. He definitely has symptoms of it. We will test further before it is ruled out. We've done just a bit of testing since getting home. The first week home, all I did was sleep! Honestly, I just finished unpacking tonight, and our trip was 1 month ago! So, we are waiting for testing supplies for the kids to do much further in the testing dept.
With me... well, we don't know what all is going on exactly, BUT, since getting home from CA, I have a new development. What I was told was diverticulosis turned out to be my gallbladder! Thanks to the STOOPID (yes, I know I spelled that wrong) doc in the ER, I have suffered since June with a bad gallbladder, thinking I was going to be dealing with diverticulosis/diverticulitis for the rest of my life! Thanks wonderful ER dodo! Exactly how much more time would it have taken to have done an ultrasound on my gallbladder THAT night, when I clearly stated that I still had my gallbladder, and I knew I had stones before?!!? Apparently too much time!
Fast forward from the ER visit... my PCP sent me to a surgeon in our town who does colonoscopies. I was not a happy camper with the thought of that project! Thankfully though, that surgeon is one smart lady! She immediately told me she didn't think I had diverticulosis/litis and she thought it was my gallbladder instead! YES! Thank you! So she set me up for an ultrasound, a HIDA scan if the US was normal, and another CT scan just to dot all of our I's and cross all of our T's. Verdict, it's gallbladder problems. So, I am having surgery next Tuesday to have this booger removed! I can't wait! I think I'll feel like a million bucks when I get rid of this nasty thing! We shall see! I was feeling so much better before my gallbladder attacks started. It set me way back. I hope to be 100% on the mend when it's outta there!
Oh, and to tie this all together, I've read a lot of interesting things about gallbladder symptoms and I don't know if that is causing a lot of the symptoms I've been having and thinking I might have some rest tissue (tissue that grows back where the adrenals were, and starts functioning). I hope it all goes away when my gallbladder is removed. If not, it's back to testing for me too!
I want to get some new pics up soon. I think I will wait until the extra hydro is out of my system after surgery, and the gas they blow me up with disipates! No bloat! LOL!
Until next time....
Since my last update, I made a trip to CA with the 2 oldest kids. We had a good trip and the good doc we went to see felt one of the children probably has Cushing's, and the other one might too. Acromegaly for Caleb is up in the air. He definitely has symptoms of it. We will test further before it is ruled out. We've done just a bit of testing since getting home. The first week home, all I did was sleep! Honestly, I just finished unpacking tonight, and our trip was 1 month ago! So, we are waiting for testing supplies for the kids to do much further in the testing dept.
With me... well, we don't know what all is going on exactly, BUT, since getting home from CA, I have a new development. What I was told was diverticulosis turned out to be my gallbladder! Thanks to the STOOPID (yes, I know I spelled that wrong) doc in the ER, I have suffered since June with a bad gallbladder, thinking I was going to be dealing with diverticulosis/diverticulitis for the rest of my life! Thanks wonderful ER dodo! Exactly how much more time would it have taken to have done an ultrasound on my gallbladder THAT night, when I clearly stated that I still had my gallbladder, and I knew I had stones before?!!? Apparently too much time!
Fast forward from the ER visit... my PCP sent me to a surgeon in our town who does colonoscopies. I was not a happy camper with the thought of that project! Thankfully though, that surgeon is one smart lady! She immediately told me she didn't think I had diverticulosis/litis and she thought it was my gallbladder instead! YES! Thank you! So she set me up for an ultrasound, a HIDA scan if the US was normal, and another CT scan just to dot all of our I's and cross all of our T's. Verdict, it's gallbladder problems. So, I am having surgery next Tuesday to have this booger removed! I can't wait! I think I'll feel like a million bucks when I get rid of this nasty thing! We shall see! I was feeling so much better before my gallbladder attacks started. It set me way back. I hope to be 100% on the mend when it's outta there!
Oh, and to tie this all together, I've read a lot of interesting things about gallbladder symptoms and I don't know if that is causing a lot of the symptoms I've been having and thinking I might have some rest tissue (tissue that grows back where the adrenals were, and starts functioning). I hope it all goes away when my gallbladder is removed. If not, it's back to testing for me too!
I want to get some new pics up soon. I think I will wait until the extra hydro is out of my system after surgery, and the gas they blow me up with disipates! No bloat! LOL!
Until next time....
Monday, August 30, 2010
New picture 15 months post op
I'm starting to see collar bones again! I've lost about 60 lbs., but have stalled. Once I get my thyroid up and running again, I'll be back in the weight loss business. I'm wearing a size 16 dress in this picture. That's a far cry from the 26/28's I wore with Cushing's!
Wednesday, August 25, 2010
New laptop and Windows 7
I'm lovin' it! I'm getting things set up, and getting use to it, but I can tell I'm really going to like it! Windows 7 is my kind of program! I may turn into a computer geek yet. Well, only half way! LOL!
Tuesday, August 24, 2010
I got a perm!
I've had my hair straight for about 15 months. It was falling out again (thanks faulty thyroid) and it's so thin to being with. I just couldn't do anything with it! Clips, hair barrettes, and such, would slide right out. I've got body in it now! I like it. I'll post new pics later. When we go to CA in a couple of weeks, I'll take new pics.
Today was a bummer day. I have some major computer troubles with a new laptop I got. Wish I could start the day over!
Today was a bummer day. I have some major computer troubles with a new laptop I got. Wish I could start the day over!
Sunday, August 8, 2010
Wow! Long time since I've been on here!
I can't believe it's been so long since I've posted on my blog. There is a lot to update! First off, I love the new choices for backgrounds! I had to laugh when I seen the train! It fits so perfect with the title of my blog!
On to other things. Where to start? I'm now nearly 15 months post op! That seems so hard to believe! I've lost nearly 60 lbs. so far, and have at least that much more to lose. I'll post some new pics later. I don't have any recent ones to put up at the moment. My clothes are getting big again, so I think it's time to go down to a 14/16 for some things. There are still some 20's I can't wear, but some things are made different, or not sized right. I started out in a 26/28 15 months ago, so that's progress! I've lost tons of inches. I don't know how many at the moment. I have a lot of skin that will have to be cut off to get rid of it. If I could cut off the extra skin on my stomach right now, I could probably wear a 10 again!
I've been on 10 mg. of hydrocortisone for months! I don't remember exactly when I decreased to 10 mg., but it was somewhere around January, 2010. I've learned some things about my body along the way. I need 2 sodium tablets a day in the summer, and more if I'm sweating and spending a lot of time outside. I need 3/4 of a fludrocortisone in the summer. Winter time is a different story. I don't need any extra sodium, and only half of a florinef. Of course, that could all change by the time winter rolls around again! LOL! I take a boat load of stuff each day, but it's what keeps me feeling good! I'll list what I take, but keep in mind that everyone is different, and some people only take a few pills to feel good. We all have different circumstances. Here's my daily regimine:
7.5 mg. hydro at 7AM
2.5 mg. hydro at 2 PM
3/4 of a fludrocortisone tablet
Estrogel (estrogen)
Testosterone gel
GH
Levoxyl (thyroid)
Pregnenolone
Prenatal Vitimin
Provigil
Magnesium
Clarinex
Tonalin CLA
Vit. B12 sublingual
Sodium tablets
Things I take occasionally:
Pain medicine
Phenergan
Vit. D 50,000 IU
There is probably something I'm forgetting. LOL! Some of those things I could "live" without, but I don't feel good if I don't take them!
Overall, I've felt pretty good since having my BLA. I'd say life is much better! I did have a set back in June. I started having terrible pain on the right side of my stomach one day. I thought maybe I was too low on hydrocortisone, as I had tried to wean 1.25 mg. more, per docs instructions. I took more hydro, but it didn't change anything! I started feeling nauseated, so I took some Phenergan. If I ever get low (catch a flu bug or something), taking a Phenergan gets rid of any nausea, and taking just a tad more hydro takes away any other symptoms. So, I had taken extra of these, and it didn't change a thing! All the Phenergan did for me was make me extremely tired and sleepy, but I couldn't sleep for all of the pain. I thought maybe I was really low, and needed more hydro, so I took some more. I waited about 20 min. or so, and still, nothing changed. Only now that I had so much extra hydro in me, it made me sick, and I did throw up. That made me a little bit panicked! I took some more, because after you puke, you are suppose to take extra and see if you can hold it down. That came straight back up, as soon as it hit my stomach! I decided I was right in the first place, and whatever this was, it was not AI (adrenal insufficiency). I did not want to give myself my emergency shot, because I really didn't feel low.
This started out of nowhere, around 2 PM. The pain never let up, and felt a lot like labor pains, but at least with labor, you get a break! When my husband got home, he started looking online to see what might be causing the pain. We thought maybe gallbladder or appendix. Finally, around 6:30 or so, I had had enough! I yelled at him to just call the ambulance! LOL! I told him I was sorry later. ;)
When the squad got here, they asked questions, looked at my medic alert tag, and got me in the squad. They checked my sugar, and it was down to 58! I had no clue! I had no symptoms. I was in so much pain, that was all I could focus on. So, they put either glucose or dextrose in the IV they started. Before they did any of that, they gave me a Zofran. It's for nausea, and it works fast. I think they just didn't want me to puke in their nice red wagon! LOL! When we got over to the hospital, they checked my sugar again, and it only came up to 68, so they gave me the rest of the packet, container, whatever it was. THAT raised it up to 200 something later.
So, I told them what was going on, once I got in the hospital. They gave me some Nubain pretty quickly, thank the LORD, and got me down for a CT scan. I found out I had diverticulosis. Now, they said I didn't have diverticulitis, because my white blood cells were not high enough. Later, I found out they were raised, but just not to the point they give antibiotics. So, in my opinion, it was diverticulitis, not just diverticulosis.
So that has been an ordeal! I went to a liquid diet for a while, and I am slowly trying to add things back in. I have to find out what my trigger foods are. When I get something that doesn't work for me, I have another set back. That's the most of what I'm dealing with now. As far as recovery from the BLA, I've done great. Sometimes, after you are cured of Cushing's, these other diseases and conditions pop up, because the absence of cortisol (steroids) unmasks them. The treatment for some of these things is steroids. I've had diverticulosis for a while. It was seen on one of my previous scans, but never a problem before.
Enough about that. Let's talk about the kids and their problems. My two oldest kids started testing for Cushing's disease. They have gotten some highs, which are positive for Cushing's, but the doc they were seeing, apparently forgot how to read labs! I've been through too much, and I know how this disease and the whole diagnoses process goes. I'm not playing games! I don't have time to waste! I'm seeing my kids get sicker. SO, we hare heading to CA in Sept. to see our wizard doc! More about that in a min.
This had been so hard for me. It's bad enough to go through a disease yourself, but to see your children go through it, and know first hand what it's like, is harder than having it yourself! On top of that, both of them have major dental problems going on. It looks like my boy may have Acromegaly as well as Cushing's. You can have more than one kind of pituitary tumor at once.
For those who don't know, Acromegaly is a Growth Hormone producing tumor on the pituitary. If you are a child and still growing, this kind of tumor causes Gigantism. If you have already stopped growing, it is called Acromegaly, and it causes other bone growth. Your forehead bones grow out. This is called frontal embossing. Your jaw grows and makes your teeth spread. It causes you to develop an underbite, and other misalignment. It can cause hand, foot, nose, and ears to grow as well. He has several of these things going on, after having stopped growing for several years! To correct the jaw growth, first of all, it has to be stopped at the root of the problem. Then, they can start corrections. As it is, he will need surgery on his jaw to make it right again. They will break his jaw, cut off bone, and reset it. He will have to have braces to bring the teeth back together. My daughter has different issues. Her lower jaw is underdeveloped. The top is narrow and needs a spacer. I can't do any of this until she is diagnosed. They have to have MRI's and you can't get good pics with metal in the mouth.
So, I've been stressing about all of this! We didn't have the money to just hop on a plane to go see our distant doc! I was fretting about how we would ever come up with the money to go. We have spent so much for my medical care for the past several years, it has drained us! We had made some recent investments with money my hubby got when he lost his job. We were willing to pull them all, take our losses, sell our house... do whatever we had to do. I called our investor, and he said we had money available to take out, without penalty! God is so good! It seemed there was no way possible to make this trip. This is only the beginning. There will be much testing going on, and more travel, surgeries, follow ups, etc. At least we are back on the road to solving the problem. If I think about it for too long, it becomes overwhelming again, but I know God will make a way! He always does!
On to other things. Where to start? I'm now nearly 15 months post op! That seems so hard to believe! I've lost nearly 60 lbs. so far, and have at least that much more to lose. I'll post some new pics later. I don't have any recent ones to put up at the moment. My clothes are getting big again, so I think it's time to go down to a 14/16 for some things. There are still some 20's I can't wear, but some things are made different, or not sized right. I started out in a 26/28 15 months ago, so that's progress! I've lost tons of inches. I don't know how many at the moment. I have a lot of skin that will have to be cut off to get rid of it. If I could cut off the extra skin on my stomach right now, I could probably wear a 10 again!
I've been on 10 mg. of hydrocortisone for months! I don't remember exactly when I decreased to 10 mg., but it was somewhere around January, 2010. I've learned some things about my body along the way. I need 2 sodium tablets a day in the summer, and more if I'm sweating and spending a lot of time outside. I need 3/4 of a fludrocortisone in the summer. Winter time is a different story. I don't need any extra sodium, and only half of a florinef. Of course, that could all change by the time winter rolls around again! LOL! I take a boat load of stuff each day, but it's what keeps me feeling good! I'll list what I take, but keep in mind that everyone is different, and some people only take a few pills to feel good. We all have different circumstances. Here's my daily regimine:
7.5 mg. hydro at 7AM
2.5 mg. hydro at 2 PM
3/4 of a fludrocortisone tablet
Estrogel (estrogen)
Testosterone gel
GH
Levoxyl (thyroid)
Pregnenolone
Prenatal Vitimin
Provigil
Magnesium
Clarinex
Tonalin CLA
Vit. B12 sublingual
Sodium tablets
Things I take occasionally:
Pain medicine
Phenergan
Vit. D 50,000 IU
There is probably something I'm forgetting. LOL! Some of those things I could "live" without, but I don't feel good if I don't take them!
Overall, I've felt pretty good since having my BLA. I'd say life is much better! I did have a set back in June. I started having terrible pain on the right side of my stomach one day. I thought maybe I was too low on hydrocortisone, as I had tried to wean 1.25 mg. more, per docs instructions. I took more hydro, but it didn't change anything! I started feeling nauseated, so I took some Phenergan. If I ever get low (catch a flu bug or something), taking a Phenergan gets rid of any nausea, and taking just a tad more hydro takes away any other symptoms. So, I had taken extra of these, and it didn't change a thing! All the Phenergan did for me was make me extremely tired and sleepy, but I couldn't sleep for all of the pain. I thought maybe I was really low, and needed more hydro, so I took some more. I waited about 20 min. or so, and still, nothing changed. Only now that I had so much extra hydro in me, it made me sick, and I did throw up. That made me a little bit panicked! I took some more, because after you puke, you are suppose to take extra and see if you can hold it down. That came straight back up, as soon as it hit my stomach! I decided I was right in the first place, and whatever this was, it was not AI (adrenal insufficiency). I did not want to give myself my emergency shot, because I really didn't feel low.
This started out of nowhere, around 2 PM. The pain never let up, and felt a lot like labor pains, but at least with labor, you get a break! When my husband got home, he started looking online to see what might be causing the pain. We thought maybe gallbladder or appendix. Finally, around 6:30 or so, I had had enough! I yelled at him to just call the ambulance! LOL! I told him I was sorry later. ;)
When the squad got here, they asked questions, looked at my medic alert tag, and got me in the squad. They checked my sugar, and it was down to 58! I had no clue! I had no symptoms. I was in so much pain, that was all I could focus on. So, they put either glucose or dextrose in the IV they started. Before they did any of that, they gave me a Zofran. It's for nausea, and it works fast. I think they just didn't want me to puke in their nice red wagon! LOL! When we got over to the hospital, they checked my sugar again, and it only came up to 68, so they gave me the rest of the packet, container, whatever it was. THAT raised it up to 200 something later.
So, I told them what was going on, once I got in the hospital. They gave me some Nubain pretty quickly, thank the LORD, and got me down for a CT scan. I found out I had diverticulosis. Now, they said I didn't have diverticulitis, because my white blood cells were not high enough. Later, I found out they were raised, but just not to the point they give antibiotics. So, in my opinion, it was diverticulitis, not just diverticulosis.
So that has been an ordeal! I went to a liquid diet for a while, and I am slowly trying to add things back in. I have to find out what my trigger foods are. When I get something that doesn't work for me, I have another set back. That's the most of what I'm dealing with now. As far as recovery from the BLA, I've done great. Sometimes, after you are cured of Cushing's, these other diseases and conditions pop up, because the absence of cortisol (steroids) unmasks them. The treatment for some of these things is steroids. I've had diverticulosis for a while. It was seen on one of my previous scans, but never a problem before.
Enough about that. Let's talk about the kids and their problems. My two oldest kids started testing for Cushing's disease. They have gotten some highs, which are positive for Cushing's, but the doc they were seeing, apparently forgot how to read labs! I've been through too much, and I know how this disease and the whole diagnoses process goes. I'm not playing games! I don't have time to waste! I'm seeing my kids get sicker. SO, we hare heading to CA in Sept. to see our wizard doc! More about that in a min.
This had been so hard for me. It's bad enough to go through a disease yourself, but to see your children go through it, and know first hand what it's like, is harder than having it yourself! On top of that, both of them have major dental problems going on. It looks like my boy may have Acromegaly as well as Cushing's. You can have more than one kind of pituitary tumor at once.
For those who don't know, Acromegaly is a Growth Hormone producing tumor on the pituitary. If you are a child and still growing, this kind of tumor causes Gigantism. If you have already stopped growing, it is called Acromegaly, and it causes other bone growth. Your forehead bones grow out. This is called frontal embossing. Your jaw grows and makes your teeth spread. It causes you to develop an underbite, and other misalignment. It can cause hand, foot, nose, and ears to grow as well. He has several of these things going on, after having stopped growing for several years! To correct the jaw growth, first of all, it has to be stopped at the root of the problem. Then, they can start corrections. As it is, he will need surgery on his jaw to make it right again. They will break his jaw, cut off bone, and reset it. He will have to have braces to bring the teeth back together. My daughter has different issues. Her lower jaw is underdeveloped. The top is narrow and needs a spacer. I can't do any of this until she is diagnosed. They have to have MRI's and you can't get good pics with metal in the mouth.
So, I've been stressing about all of this! We didn't have the money to just hop on a plane to go see our distant doc! I was fretting about how we would ever come up with the money to go. We have spent so much for my medical care for the past several years, it has drained us! We had made some recent investments with money my hubby got when he lost his job. We were willing to pull them all, take our losses, sell our house... do whatever we had to do. I called our investor, and he said we had money available to take out, without penalty! God is so good! It seemed there was no way possible to make this trip. This is only the beginning. There will be much testing going on, and more travel, surgeries, follow ups, etc. At least we are back on the road to solving the problem. If I think about it for too long, it becomes overwhelming again, but I know God will make a way! He always does!
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