Wouldn't you like to be a 'weaner' too!?

Saw the hot dog commercial and it made me think. Then it made me laugh. Yep, I'm a weaner - in a different sense of the word. Guess it's my crazy sense of humor right now! hehe!

Anyway, feeling ok today and have decided to go ahead and wean again. So still 30mg in the morning, but now down to 20mg in the afternoon and evening. I felt like this wean in the evening has gone just fine and relatively unsymptomatic, so I should keep going right? Then why do I feel like I should be feeling more? Maybe tomorrow it will hit me more. We'll see. I'm afraid of feeling so badly and at the same time I'm worried of not feeling anything. I don't want to think my body has too much cortisol and the surgery didn't work. But I can't help it. Ugh.

Still eating and drinking just fine tho. I did have a moment this evening where dinner just didn't sit well with me and I thought I was going to pass out in the bathroom. After that I was fine tho. I ate a banana and drank some gatorade to settle things down and keep my electrolytes in check. Don't want those to get all wonky. . .

Weekend warrior!

Just resting this weekend, so not much going on. Wean is still going well with no major withdrawal issues. I actually feel weird that I haven't felt more. But I guess my body is ready for this.

Kids and hubby went out today to a birthday party, so mom and I were left at home. It was nice to rest and I actually got up enough to do a little bit of scrapbooking. Not much by any means, but some nonetheless. Takes a lot of thought to put these pages together. But I really want to get the Disney scrapbooks done in a reasonable time frame. So that was nice mom/daughter bonding time.

Other than that, I'm eating and drinking well still. No headaches, still sleeping in in the morning and having sleeping issues at night, but I'm hoping with each wean that will get better.

Dreaming of the hydrocortisone!

Ok, I've officially lost my mind. I actually had a dream last night that I couldn't take my meds. I wanted it, but couldn't find it or get to it. I actually felt achey all over and my head hurt! Thankfully my hubby knows me well and brought me an ice pack in the morning after I took my 8am dose. I think this is definitely more psychological than anything! But still. DREAMING of it??! Ugh.

Other than that, I felt pretty good today. No major issues, just tired and headachey. Which could still be sinus pressure on top of the weaning as well. Who knows. I can breathe clearly through my nose, but I can feel the postnasal drip which is still icky. Wish this would go away already.

Oh and forgot to mention earlier that my electrolytes were fine from the blood test Monday as well. So I'm just good all around. Nothing new here. :)

Trying the wean again. . .

I've been feeling better the last few days, no major symptoms and even the minor ones have been few and far between. I've still been sleeping late in the morning after my 8am dose, so that's still an issue as far as child care goes, but otherwise it's just my body resting because my nighttime sleep has been so scattered. I've been on 30/30/30 for 3 weeks now and I feel like I'm finally ready to try to move down again.

I've been resting in my chair and not doing much at all. I don't have the headaches I did early on and have been generally feeling overall better. Almost NORMAL. I actually emptied the dishwasher today too. That was my big event of the day. I got tired and couldn't fill it though. I still have my woozy, lightheaded moments, but they are few and far between. So that's why I thought I could go ahead and wean. I'm still on antibiotics and I did ask Dr. L if it was ok and he said yes. So there we have it. Tonight I took only 20mg of hydro.

Still eating ok - tho still smaller portions and I'm still drinking more than I was preop. It's not a bad thing other than having to go to the bathroom so often and being thirsty for something sooo cold. All my drinks have to have ice in them. I am starting to run out of drinks to drink! Those I do being Pepsi, Sprite, apple juice, orange juice, gatorade, tea, milk and water. A nice strawberry daiquiri would be nice! hehe!

Anyway, I'll keep ya posted on how this wean goes. Hopefully better than the first time around!

Appointment day

I tried to get up earlier, but I still can't do it. I'm still so tired after taking my 8am dose. But I got up at 10am and we managed to make it to the lab soon after 11am. I got my blood taken again to check my electrolyte imbalance. I forgot to post that last weeks was ok and all was normal from what Dr. L told me. I was worried about this weeks, after my whole ordeal this weekend.

After that we went right back to the ENT who wanted a follow up to see how I was doing. She numbed the inside of my nose and really scoped it out this time. she said I have a lot of scar tissue back there and that she even made it bleed a little. She couldn't get through it though. Even tho my nose was all numb, I could still feel the pressure of her pushing on that tissue in there. It wasn't nice. She said the infection was still bad and gave me another script for another 7 days. I was to follow up when that dose was done.

Back home we went where I went back to my comfy chair. I am feeling better than I have in days, but still more woozy than I'd like. That light headed feeling is weird for me. Even eating, going to the bathroom, standing more than 10 minutes leaves me dizzy and just takes all my energy! I hope I get it back soon.

I think the antibiotic is starting to work!

I finally feel some relief from the horrible sinus headache that has been plaguing me for so long. I'm not saying it's gone, just not as bad. My eyes felt like they were going to pop out there from all the pressure it was so bad! I'm still resting and not doing much at all. I get my woozy moments even just walking to the bathroom. I hate feeling like this. I just want to feel better already. I still have no idea what I've gotten myself into. I just pray the rest of the weaning doesn't go this badly. :(

I'm still eating minimally, cuz I'm still stuffy and I'm still drinking more than usual - but all normal I guess at this point. I'm actually due to have my uhm..."cycle" about now, but I'm assuming since they messed with that when they messed with my pituitary gland, I won't be seeing Ms. Flow for some time. Wonder if that will mess up my my hormone levels and/or weaning at all. Who knows. Time will tell.

Sucky Saturday...

This is going to be one of my quick posts today. I still feel like crap and my eyes are even blurring over. I can't concentrate and just want to sleep. I think the antibiotic is kicking - but slowly. Eating minimally as I can't taste anything, but still drinking more than usual. Otherwise ok.

The pic was taken by my husband with his camera phone. Horrible picture, but you can see I have the tissue up my nose to stop the leaking and the ice pack over my head... It's all just baaaad...

CSF leak??! No..just a HORRIBLE sinus infection!!

I woke up at 7am this morning totally terrified that I was having a CSF leak (cerebral spinal fluid leak). My nose was just drippy and gross. I called hubby up (who was getting himself ready for work) to come see. He of course wasn't sure what to think, so we called Dr. L. (I hated doing that since it was 4am his time, but I panicked!) He said he didn't think it was a CSF leak because I didn't get the positional headache that almost always accompanies them. He said to ride out the leak and see if it got worse over the course of the day. If it got worse, I was to go to the ER. Great.

Well of course I've had this stupid headache for the last week or so now, so I don't know if that's part of this or not. It doesn't hurt like I've heard CSF leaks do, but still. I try to rest and I keep tissues in my nose to help the leakage. I also started to notice this GAWD awful smell. Not sure what it was, but it was making me sick to my stomach. At around 10am, I finally broke down and called my local ENT (ear/nose/throat doctor). They would know one way or another what was going on. That's why I saw them preoperatively right? I was able to get an appt at 1:20. Great!!

So I eat breakfast/lunch and we get the kids ready to go. We get to the doctors office and I get brought back after a few minutes. Nothing like my mom telling the receptionist that I can't sit long cuz I just had brain surgery less than 2 weeks ago. hehe! In any case, it turns out I have a MASSIVE sinus infection!! That smell I was smelling was the infection! It was all going down my throat. They did the test to check for a CSF leak as well, but nothing showed up, so they were sure it was just a sinus infection. YUCK! Thankfully they gave me a script for an antibiotic & an antihistamine. We dropped them off before we came home because I wanted to get them asap!

I took my first pill at 5pm and I am praying it would work fast. I feel like pure crap. My head aches. My body hurts. I spoke to Dr. L, who informed me I had to go back up to my 30/30/30 levels and stop the weaning until this infection was under control. *sigh* Now I'm just going to go to bed with a bunch of ice packs and pray the morning is better....

Wean day #2

Mornings are still hard for me. I take my 8am dose and then I'm still sleeping til 10-11am! I don't know what it is. I still have this headache that just won't go away either. It's not horrible, just neverending. I feel a little more congested today too. Still trying hard not to sneeze - as I don't want to go and blow out that fat graph they put in my nose to hold the spinal fluid leak I had after the first surgery. I'm using the nose spray, but that's about it. Don't want to mess with anything up there.

Otherwise I'm eating and drinking ok as usual. Still resting throughout the day with my slight woozy, lightheaded moments. Doing day two of my wean and so far so good considering.

Just your average weaning Wednesday

Feeling ok other than mild headache, eating ok, still very mild DI. I pretty much rested all day and felt like tonight was a good a time as any for me to go ahead and start weaning from the hydrocortisone. Which meant a 10mg drop in my last 8pm dose. So down to 20mg. I'm worried, but felt like it was time.

The start of week 2 and the kids last 2 days of school

I didn't sleep more than 4 hrs Sunday night. My Monday was a bit crazy, so I'm reporting it to you a day late.

I slept til 9:30am Monday morning. Was weak and had a mild headache. Shower helped but I still felt very weak. I ate breakfast and then mom took me to the lab to get my first electrolyte blood check. I probably looked like death warmed over, cuz that's how I felt. Didn't even bother to do anything other than brush my hair.

After the lab, we went through the drive through at CVS to renew my hydrocortisone prescription. Then we went to Dunkin' Doughnuts and we would've gone through the drive through except I had to pee and so we went in. After that, mom went to AC Moore to get some craft stuff, but I stayed in the car. By that time it was time to pick up the kids from school. They were only going half days now and I wanted to say goodbye to some of the moms and their teachers. I stayed in the car, while my mom went to let them all know I was there. It was nice when both kids teachers came to see me. Very emotional that this was the last time I would see them. I felt bad I couldn't be more involved the last part of the year. I did say goodbye to a few of the moms as well and then we were off, back to the house.

When I got home, I had the worst headache since I'd been out of the hospital. I took my 2pm dose of hydro and then thought I could take 2 oxycontin pills as well for the pain. (they were 5mg each) That zonked me right out and I fell asleep in the chair. I awoke around 6pm, enough to eat 1 taco, but felt HORRIBLE. Woozy, nauseaus, dizzy, rubber legs, shaky etc. Just not good.
Hubby took me upstairs to bed. I put two ice packs on my head and a cold washcloth over my eyes and just laid flat and tried to sleep some more. I dozed a little, but after an hr of still not feeling so well, hubby gave me 2 excedrin pm and I slept the rest of the night.

I woke this morning and felt better. Not great, but not as bad as last night. This may be TMI, but I finally did #2 too which I think helped my body... I also felt the DI seem to lessen. Like I wasn't needing to drink.pee AS much. I ate lunch and dinner and am feeling ok. Off to bed soon.

Just another day. . .

Woke up with a really bad headache this morning. Hubby got me an ice pack and I fell back asleep til 11am. I seem to have an issue with taking my meds at 8am and then my body just crashes and I finally sleep more soundly. I woke up to the headache still tho and an overall ill feeling. I took my shower and that helped a little. I managed to eat a few pancakes - which turned out to be my breakfast and lunch. Just wasn't feeling up to eating.

Still drinking and peeing a lot. Had pizza for dinner and ice cream for evening snack. Just not feeling "well."

Overview of my days

I thought in doing this blog, I'd try to give a daily overview of my day and how I'm feeling. It may be in depth or it may be very short. But it's an update nonetheless AND it helps me keep track of things. I'm better at typing things out than writing, so it's easier too.

So starting today - Saturday, June 14th. 1 week 1 day postop

I'm on 30mg of hydrocortisone at 8am in the morning, 30mg of hydrocortisone at 2pm and 30mg of hydrocortisone at 8pm. Dr. L has it set up to take this way because that is the normal rhythm of your bodies regular cortisol supply. A normal person has high cortisol levels in the morning, and they slowly taper off during the day and then should be next to nothing overnight. While I was testing though, my levels were highest at midnight and 4am. So you can see that going 6 hrs and then 6 hrs and then TWELVE hrs between taking my meds, that that 12 hrs would be hard for me.

When I left the hospital, I was taking the hydro every 8 hrs. I stress dosed while on the plane ride home and then started slowly adjusting to get to the 8am/2pm/8pm schedule. My nights are tough. I get woozy, lightheaded and nauseaus getting up in the middle of the night to go to the bathroom. And I still do get up quite a few times a night unfortunately. DI is still going strong. I have a cup of ice water on top of a pitcher of ice water next to my bed. So I'm drinkin' and peein' all night long. Doesn't make for a good nights rest. On top of craving for my next dose of meds too. But managed after a week of being home to get onto the right schedule and just deal with the symptoms.

The headaches are the worst. I've been taking Excedrin Migraine to help. Caffeine helps to raise cortisol levels a bit too - which is in the Excedrin along with acetaminophin. I also still feel cold at odd times. It's 90 degrees outside and 70 or so inside, but I'm still freezing. It comes and goes and thankfully I have a nice blankie to keep me warm.

I'm eating normally, just in smaller portions. Seems to take a lot out of me oddly enough. Still drinking a lot though.

Back from Seattle, recovering from pituitary surgery!

I'm on day 4 of being home from Seattle and so far I'm doing ok. I was in denial from day one that I even had this stupid disease because I felt pretty good considering and didn't have any outward symptoms or symptoms that couldn't be chocked up to something else. Which is why it's so hard to diagnose in general. But that said, here's the story of my latest trip to Seattle...

I left for Seattle, on Sunday June 1st at 8am. Being to the airport that early is too much. But the flight was pretty good and it does go by fairly quickly, considering it's a 5+ hr trip. My mom also arrived into Seattle about an hr before I did. Hubby and MIL stayed home with the kiddos so they wouldn't miss anymore school! Again it was sooo hard leaving them. Worrying about the plane and making sure it got there safely and then how I'd do with the surgery itself was VERY worrisome. I don't want to leave my kiddos... But they were fine and I had things lined up for them during the day, even aside from them still finishing up their last few weeks of school. It wasn't til the night time hours that it hit them I wasn't there. Talk about guilt when I talked to them though!!

Sunday was fairly boring. The car service didn't know where the hospital I needed to go was and I ended up paying more for that fare than planned. We checked into the Inn in the hospital and got a nice corner room. It was a TAD bigger than the last one. No view of the Needle this time tho. We vegged out in the room and then got lunch. Then we went back to the room, played a little Rummikub, got dinner and back to the room. I was lucky enough to meet one of the gals from my Cushings message board at dinner. Her and her hubby were there going through all this too. We were to have surgery on the same day oddly enough!! She was still going through some testing too. In any case, mom and I were in bed an asleep though before 9pm. Remember, there's a 3 hr time difference from the east coast to the west!

Monday morning I got up bright and early. I had my appt with the endocrinologist - Dr. L and the neurosurgeon Dr. M at 9am. I also met with other staff to finalize paperwork and whatnot. I went through the whole procedure and what to expect a few times. I was there til about noon. Then mom and I went to lunch and then had to get my PICC line in around 1pm. Unfortunately, the nurse that did my PICC line had to do it twice as the first line seemed to get stuck and would not go up the artery. So she moved over a bit and was able to put it in the second time. Then we went back up to the room to rest. And of course play another round of Rummikub - which I managed to win again. :) We were supposed to go out to dinner with my surgery buddy and another gal who was coming up for testing from the cushie board, but it didn't pan out that way.

My surgery buddy had some weird results on one of her tests and had to go back in to do the IPSS again. My other cushie buddy was staying with a friend and couldn't meet us til late. Being off times, we just couldn't meet too late. So mom and I decided to do dinner on our own outside of the hospital. We asked the gals at the admitting desk and one of them wonderfully decided to go with us on the bus to Pikes Market Place and show us this nice restaurant. It was so sweet!! We got off the bus and walked down to this restaurant called 'Cutters.' It was a nice seafood restaurant and it had a NICE lavendar cosmo that we decided to try. BOY was it powerful! I only had 3 sips, but it knocked out the horrible headache I had at the time!! Mom was a little loopy too! And the lady that had taken the bus with us, had a shuttle set up to take us back to the hospital! Again, so sweet!! (Taking the bus at night just wasn't a good idea!) Once we got back to the hospital, we both konked out pretty quickly!!

Tuesday morning, I woke up bright and early again. Nerves were really hitting me. But I was at the day surgery center at 7:30am. Got registered and then brought back to change into the hospital gown. Had my full history done and IV started through my PICC line. I didn't fight the catheter this time, as they didn't want to put it in. So I just went with the flow... ;) Thankfully my mom kept my spirits high so I wouldn't be too nervous. They came for me at 9:40am. That's when I started shaking. Dang those nerves! They took me to a waiting area, where I spoke with the anesthesiologist. Then they took me to another room where they got a CT scan of my head. I guess it helps their GPS system once they are in my head. Then they started wheeling me down to the OR and the anesthesiologist said he'd give me something to calm my nerves and the next thing I knew I was out of it. I don't even remember making it into the OR.

I don't remember being brought back to the hospital room. The rest of that day is kind of vague. I remember them telling me to pee in a bedpan, but I couldn't. I remember trying to get up to pee, but also couldn't. I felt like I had to go, but just could not. They did a bladder u/s and sure enough saw I had a lot in there. So after all that, in came the catheter. That helped. I also had these balloon type things on my calves. I guess it helps to keep from getting a clot in your legs, while you are laying. Problem is, every time I got comfortable, these things would do their thing and blow up to squeeze my legs some. It was annoying more than anything.

I felt horrible in general though. Excruciating headache pain, my eyes hurt, my nose hurt... Thankfully they kept me on a high dose of meds. Percocet seemed to upset my tummy, so I stopped that as soon as I figured it out. My first postop number was 50 - which I knew was bad. It did drop to the 40's, then 30's, then 20's, then down to 5, up to 7 and then back up to 30 over the next 3 days. I dealt with the painful aches and pains of going through cortisol withdraw, with nothing to show for it. I was beyond upset. They were taking blood at 6am/pm and 12am/pm and it was nervewracking watching the clock and waiting for results.

On top of that I got something called Diabetes Insipidus (aka DI). It's where you have an unending thirst and it goes right through you. You crave anything to drink and it has to be ICE COLD! Thankfully due to the catheter I didn't have to worry much about the peeing part, but boy was I thirsty!!! Nice cold water or juice or anything that they would give me!! MMMmm...! But it had lessened over the next few days and I got the cath out before Friday. But by Friday when my numbers weren't going the way they'd hoped, they decided they didn't get all the tumor and I had to go back in for another surgery. :( I was bummed to say the least. When my 6am numbers on Friday jumped back up to 30, I knew they were going to take me back to surgery that morning.

Friday, at 9:30am they came to get me and take me back to surgery. I was just bawling. I had told my kiddos I'd be home by Sunday and now it wouldn't be til next week. And the fact that Dr. M was sure he'd gotten it all the first time and wasn't sure he'd get much out this time was unnerving and worrisome. But back in I went. The staff was very sympathetic. I got to see the OR this time in all it's high tech glory and one of the docs in the room actually sat with me holding my hand til the anesthesia knocked me out. Again I don't remember much afterwards...

I vaguely remember being back in the room with the worst headache. I was still drugged up from the anesthesia and whatever pain meds they were giving me. They checked my eyes to make sure they didn't mess with my optic nerves, but boy was that painful to my headache. I passed back out and every so often I heard someone ask if I had to go to the bathroom. I kept saying now and could've cared less if I peed myself. (Which is so unlike me..hehe) It must have been late afternoon or evening when I heard one of the nurses run in saying my levels were 1.3 and they needed another blood draw. Then I was out again. I remember them coming back once an hr to get another draw. Saying it was 1.1 a few times and then finally dropping to 0.9. I could finally be supplemented with hydrocortisone. I finally came out of my stupor sometime Saturday morning. The leg balloon thingy woke me up. That dang thing.

They tried to get me to pee in a bedpan, but like after the first surgery, I couldn't. So they dragged me up and put me on this portable potty they called "the comode." Thankfully I was able to go, but boy did I go and go and go!! Turns out I ended up getting DI again, but not as bad as the first time. I was able to get up and go to the bathroom this time thankfully. And it didn't dilute like it did the first time. I guess my numbers were close, but stayed within normal ranges - so it wasn't officially labeled DI. While I still felt sort of woozy and headachy, I did feel "better." I stayed through the weekend and got pain meds as needed. Dilauded was the best med - given through IV. Boy did that knock me out. I could use that now!

In any case, I was discharged on Monday, June 9th, 2008. They took out my PICC line then and I got all my prescription meds and mom and I were back to the Inn. The nurses there were so wonderful, they got me a wheelchair to have for the next 24 hrs to use getting from my room at the Inn to the cafeteria to eat. We took the Shuttle Express from the hospital to the aiport at 7pm Tuesday night. Our flight out was at 10pm. Yep a redeye flight. Boy did it suck. I may have gotten a half hr's worth of sleep. On top of stress dosing and worrying about every little symptom, I just could not relax.

We arrived home at 6am EST. We got our limo driver, our bags and off we were to get home! Unfortunately, we had a VERY tired limo driver who was weaving all over the road and thankfully my mom was able to just talk to him the whole ride home. I was so tired, I slept a little on the drive home. We got home a little before 8am.

The kids had made signs that they posted outside the front door. And they were up and waiting for me. I had flowers and cards waiting...it was all so emotional. The kids and I prolly hugged for a good 5 minutes. Max even said he wanted to stay home from school to take care of me. I told him he couldn't cuz I needed my rest. But I promised I would be here when they got home. It was so good to be home. There's no place like home. . .