To wean or not to wean. . .

I slept great again last night and for the first time in a week or so, after taking my 8am dose I fell back asleep. I mean I was out. I woke up a little after 10am. Thankfully the kids were doing well on their own downstairs watching a movie. Hubby had fed them breakfast before he left for work, so they were ok there too. But geez. I don't know why that happens some days and not others. My body just needed that extra rest I guess.

I ate ok for breakfast, didn't feel up to having lunch and ate an ok dinner. I'm starting to think the DI or what was left of it, is finally ceasing. I just don't feel as thirsty anymore. Don't get me wrong, I'm still drinking more than I did pre-op, but it's definitely dwindling. I don't feel like I have to carry a bottle of water with me when I go out.

We took a walk again tonight and I made the whole trek. I was beat and my muscles were aching, but I did it and I felt good about it. I need to do that. Get this body back in shape! Otherwise I felt ok today. A little loopy and I had a slight headache, but nothing that a can of Coca Cola couldn't help. So that's where the decision to wean again comes in. I'm still having these little symptoms. But are they enough to postpone weaning? I dunno. It's not like I'm in a rush. I don't see Dr. L until September, so I have to stay on the 20mg anyway. So why rush the last wean down to 20? But then I have longer to get used to it and maybe feel "normal" for a little while w/o out all the ups and downs of weaning. That would be nice. Ahhh decisions decisions. . .

Rest day for me!

I slept very well last night! Only got up to go to the bathroom once thankfully. I got up at 8am, took my dose and then came downstairs to help my daughter get ready for her gymnastics camp. I have an awesome friend who has taken my baby girl to camp since I still can't get up and going yet in the mornings. I so appreciate her help. Max and I just had mommy and son time. We ate breakfast together, then he did his chores, then we played Wii together.

MIL arrived around 11:30am to go pick up Emily from camp. So that was nice too. Then she took both kids to the pool club. They had an awesome time and I had a good time just resting!! I got the whole house to myself. But I still felt guilty sitting around. So I did the dishes and two loads of laundry. That's all I could muster tho. At one point I felt like I was "tripping" again. Just that woozy, lightheaded, feel like I'm flying-feeling. But thankfully after resting it went away. I ate ok and am drinking ok. We got pizza for dinner, but I was only hungry for one piece. Just didn't feel in the mood for anymore.

So a basically boring day for me. But it was nice. I need these down time alone days. Now if I could just get rid of the guilt. . .

I'm feeling about 80%

Well, yesterday was a good day, but today the symptoms really hit. It's good of course since I was obviously worried about it Sunday. But boy did it hit. Let's back up though. . .

Monday I was tired after taking my 8am dose and didn't get up til 9am. I felt ok though, took my shower and came down for breakfast. Cleaned the house some, did the laundry and dishes, played with the kids blah blah blah. No real issues. I had slept well too - soundly actually - falling asleep fairly quickly. I ate ok and drank just fine (still minimally for the most part except at night. Still haven't figured out why that is tho.) The kids, hubby and I actually went on a walk after dinner too. I went a little farther than I did last week and felt good about it. But I could feel my muscles aching. This is so good for me, but boy am I out of shape.

Last night I slept ok, but got up 3 times to go to the bathroom (doing the woozy - disoriented walk there and back). And when I woke up each time, my head was splitting! It hurt so bad! Right at the top of my head! Thankfully I was still able to get back to sleep. But by morning it still hurt too. Hubby brought me an ice pack before he went to work. I ended up sleeping til 10am. The kids were awesome watching a movie and being quiet. Hubby makes sure they eat breakfast before he leaves. I so appreciate his help.

I managed to get downstairs, but felt weak and woozy. I was still exhausted and felt like I couldn't do much at all. This is when I was missing my mom getting me a nice breakfast. But I managed to get a bowl of cereal and a cup of gatorade, then plopped in my chair. I didn't move from my chair til around noon. I was starting to feel bad watching my kids just lay around playing video games and watching tv. While they weren't complaining, the guilt just hit me that they should be enjoying their summer days. I just had no energy to do anything with them.

But I sucked it up and took them to Wendy's for lunch. I was going to take them to the Burger King that has the indoor playground, but we didn't make it that far. It's ok tho, they got their Frosty and they were happy with that. But one of them asked me so sweetly "mommy are you feeling 100%?" I said do I look like I'm feeling 100%?? They both shook their heads. (Boy I musta looked bad cuz these two are usually telling me how pretty I am or how nice I look! LOL) I told them I was feeling about 80%. Which meant I was able to do stuff with them, but not really fun stuff cuz I wasn't feeling very good. They both nodded and seemed ok with that answer. But all day they've been asking if I'm 100% yet. So I told them when I go to bed and fall asleep, THAT is when I'll be 100%. They both laughed. I told them I would try to be 90% tomorrow and they were happy with that.

Anyway, I ate & drank ok today, just not feeling up to par. Itchy, woozy, with a slight headache and am really tired. I am sitting with hubby for a little while and then I'm off to bed.

Feeling suprisingly good. . .

This is where I get worried again. Cuz I woke up without any symptoms and I slept good last night. I woke up at 8am and got up and ate breakfast with my family. I wasn't in the mood for pancakes like they were, but still. We ended up going out to Home Depot and Walmart and I was fine. The heat didn't make me feel good, but that's about it.

I took my ONE pill again at 3pm and I was tired and had a slight headache, but that's it. Not even a big enough headache to take any medicine or even drink a Pepsi!! *sigh* Again, I know I shouldn't worry, but I really thought all this would be much harder. I'm on 30mg now and my body seems ok with that. I'm not getting any Cushings like symptoms (that I'm aware of) so that's good though. But I can't help worry. I hate this stupid disease. I should be happy about all this, not complaining. There's nothing to complain about at this point in time! Ugh.

And you know that walk I took a few days ago? I'm SORE from it!! My shins are actually hurting! Talk about lazy and out of shape! So we're planning on making it more of a nightly routine if and when we can. We gotta get my butt (and the rest of the family's too) exercising!! I'll do what I can and won't overdo it, but I need to get these legs going again! Sore shins from walking the short distance I did is just SAD.

Wean day : #6

Slept ok last night. If it wasn't for the fact that I get soooo thirsty right before bed and have to drink so much water, I might not have gotten so bloated and gotten a gas bubble (or something just as painful) that made it difficult to GO to bed. *sigh* I slept on my stomach for half the night in order to push that bubble out of my stomach where it was hurting pretty badly. Thankfully it did go away tho. I was restless the rest of the night worrying about going to the in-laws. This was the first time since before I went to surgery that I was being with the whole family plus some. I know how I got pre-surgery, so I wasn't sure how I'd handle it post surgery. No one quite understands this disease let alone how I feel after the fact. I know a lot of them try to understand, but it's taken me a lot to understand all this, how can I expect them to. In any case. . .

Woke up at 7am and couldn't go back to sleep. Took my dose at 8am and then we all came downstairs for breakfast. I ate half a bagel with butter and drank some gatorade. I took a shower and got dressed. I decided I was going to try to go to the in laws. So we left around 10:30am. I took a bottle of water and a Pepsi with me, just to tide me over.

We got there and I was doing ok. But seeing the kids swimming in the pool w/o floaties and worrying about that was stressful. I knew they were ok, lots of people were watching them, but I still was worried in my own "mom" way. Then dealing with all the family, telling them I wasn't hungry (nausea was kicking in) and just feeling overwhelmed with everyone around. I don't know why I was feeling like this exactly, just that I was.

Hubby could see I needed to go lay down somewhere else. So he took me inside and I sat in a recliner. I planned on just chilling out and listening to my ipod. But as it turns out, I napped for over an hour. Guess my body DID need some down time. I felt bad that I wasn't social. But I had a headache prior to laying down and that nap totally made it go away. (Well that and some Excedrin. hehe!) I managed to enjoy the last 1/2 hr of the party. Took my ONE pill for my second dose of the day before we left.

Then we went to my MIL's house where the kids played in the hot tub. We stayed there for about an hour and then we met my FIL for dinner. We went to Olive Garden where I guess my hunger finally kicked in and I ate quite a bit! Felt ok (but full!) once we left and I made it home w/o any issues. Managed to get the kids showered and in bed and then I plopped myself in my chair. I have a slight headache and I'm tired. I will be off to bed here soon. So far this wean is off to an ok start. Hopefully it continues...

Day before the wean. . .

Nothing exciting happened today. We stayed around home and chilled. I did the dishes and laundry and played with the kids - that's about it. I ate pretty well today and actually ate lunch (which I haven't been having for the last few days). I had a small headache this afternoon which seemed to be helped with a nice cup of Pepsi. Other than that, I'm feeling good enough to wean again.

Tomorrow we actually have a bday party at the in-laws, so I'm going to try and go. I'm weaning my afternoon dose from 20mg to 10mg, so hopefully I won't feel it til after dinnertime. And hopefully doing all the extra stuff during the morning/early afternoon won't hurt me later on. But I do sorta want to go to this pool party with the kids and see them really swimming. I'll blog about how it goes as soon as I can of course, unless I poop out early once we get home. Wish me luck!

Riding out the waves

I had a rough night last night. One horrible case of the runs does NOT make me feel good. Not sure if it was something I ate, but it was bad. Then I had a hard time sleeping. I got myself all anxiety ridden about stupid stuff. Was I gaining weight, were the kids ok, was I stressing myself and making my cortisol levels higher. It was one crazy brain ride last night. I would talk myself down from it's own craziness and fall back asleep, but it wasn't a restful sleep. I got up at 8am even after not really falling asleep last night until after 2am.

Haven't really been productive today as far as housework. Did the dishes and a load a laundry. That's it. I had one of my other best friends over with her twins to give the kids a playdate. It was fun and great to have someone else to talk to. But I am tired now. My head feels like it's swimming and I could go take a nap. Not sure if it's just cuz I'm tired from last night or if I've overdone it. Something tells me it's just cuz of last night, since I've really done nothing today.

Still not eating much, limited appetite and my thirst is still dwindling. It seems to still kick in more at night, but it's still getting less and less each day. Even after a horrible night, I still woke up with a full glass of water this morning. Which is a first. I always finish the cup by morning. So I'm seeing changes slowly. Hoping it's all a good sign.

We ordered pizza for dinner and then took a walk around the block. Well hubby & the kids went AROUND the block, I went to the end of the street and back. That's all I could muster. I'm resting in my chair for the rest of the evening.

Managing alone... sort of

Sorry I haven't posted in the last few days. I've ended up conking out fairly early. I did quite a bit on Monday and I ended up getting a horrible headache and then was in bed by 9pm - asleep soon after. That was after waking up at 9:30am then too.

Yesterday, I didn't do as much, but still kept busy and dealt with a minor headache and was still in bed by 10pm. (I slept til 10am then too!) All I did both days was the dishes, one load of laundry, a little vacuuming and organizing, along with playing with the kids... But I guess it was enough.

Today I had to get up after I took my 8am dose to make sure my sweet baby girl was ready for her gymnastics camp. A friend was coming to pick her up and take her for me and then MIL was picking her up. So that helped. I was able to rest all day and just do my few chores.

The heat is still wearing me out quickly too and definitely doesn't help with the headaches. I just can't tolerate being outside for very long when it's that hot. I wonder if it will be that bad when the extreme cold kicks in. *shrug* In any case, I'm eating ok - tho still not as much. Nothing just sounds good. I'm still drinking less, but it's still there. I've found I can't go long or I start to really crave a nice cold drink. Still sleeping ok too. I have had symptoms overnight as well tho - being disoriented when I get up to go to the bathroom and feeling my head just swim. But I'm fine once I get back in bed and get to sleep.

Overall I'm doing well and managing. Just needing to take things slowly! But so far so good!

Boring Sunday

Not much new to report. Slept ok last night - somewhat restless, but otherwise ok. Got up at 8am with the kids and we all did breakfast. Hubby made me oatmeal while the kids had pancakes. It was nice. The kids and hubby ended up going to my MIL's house to go swimming. Even tho I was feeling ok, I decided I didn't want to risk feeling bad later. Sitting out in the sun/heat was not my idea of fun. I figured since I overdid it yesterday, I should sit this one out and rest. So that's what I did. I felt bad tho, because I missed out on my kiddos diving into the deep end and swimming the length of the pool - which they haven't done since they got swimming lessons 2 yrs ago. But they had fun.

I ate ok the rest of the day and am still drinking, but not as much as last week. I actually find myself drinking more at night, which is like the WORST time to do that. I don't know why that is either?? But I've only gotten up about 2 times at night to go pee, so it's not TOO bad. Again, not like last week. I had a small case of the runs earlier and I have a headache again tonight tho. I drank some Gatorade for my tummy and I'll be taking some tylenol pm to sleep with along with an ice pack for my head. Then I just have to hope I can manage on my own with the kids tomorrow AND do all my housework that needs to be done. . . *deep breath*

Tiring and emotional day

I slept fairly well last night. Felt a few more symptoms overnight - wooziness and disoriented, but otherwise I got a good nights sleep. Got up at 8am to spend the last remaining hrs with my mom. We got a few pictures of her with the kids and I.

We all decided to take her to the airport instead of staying home. It's about an hr drive there. The ride down there wasn't too bad. It got quite emotional once we dropped her off. For me more than the kids. The kids will realize how much they miss her later in the week when they are stuck at home cuz mom's too tired or not feeling well to take them anywhere. hehe! But I was missing my security blanket. She knows what I have been through in the last month and really is the only one that I feel truly understands. I know hubby and others think they understand, but just not like my mom. And I know I took advantage of my mom being here and letting me rest and not doing my housework or being on top of the kids. I'm so lucky she was able to stay as long as she did... But now it's back to the grind. So I can't help be a bit sad.

So I cried a bit on the way home. Right up until we hit a major traffic jam. Turns out there was an accident miles up ahead. So we had to keep the air conditioner at a minimum so we didn't overheat the car in the 100 degree weather we were having while just sitting in bumper to bumper traffic. So between that and the crying, my head was pounding! We did eventually stop for lunch and I took my afternoon dose along with some Excedrin.

Nothing seem to touch the headache though. We finally got home and I got soooo tired. Hubby got me an ice pack and I laid down on the couch for a minute and the next minute I was asleep. Slept for about an hour and a half. That helped my headache tho. It's not gone completely, but not as pounding as it was. I think I have just overdone it a bit today and it's how my body makes up for it. I'm just resting the rest of the day. Not even very hungry for dinner. I'll probably eat some cereal later and try to get to bed fairly early tonight. Assuming I can sleep after taking a nap. Guess we'll see.

Tolerable Friday! And 6 weeks post op!!

I slept well again last night. Actually went to bed and pretty much fell right asleep! That's been nice! Got up at 9am as well. Felt ok with a very mild headache. I'm eating ok and drinking a little less than in the last week.

I actually showed my mom I could do a bit more since she is leaving tomorrow. I drove for the first time today too and did ok. The heat and humidity got to me a bit and made me woozy and weak, but otherwise I managed just fine. We went to the post office - where I went in and sent off some letters and a package while mom and kids stayed in the car; and then to the UPS store, where my mom took some boxes in and I stayed in the car with the kids. Then we went to lunch and then to the grocery store. I felt lightheaded, which again I think is from the heat, but overall just fine.

While I'm nervous about doing all the basic stuff on my own, I think I'll be ok. It has been 6 weeks since surgery and I DO have to get back to the grind. I know I've taken all this help for granted somewhat and now I have to get back to taking care of my family. Hubby and I have worked out a weaning schedule, so I can wean on the weekends - like Friday - and then deal with any major symptoms while he's here to help take care of the kids. Then the rest of the week I should be ok to deal with the kids and do my housework. We'll see how that works out.

I also got my date to go back to Seattle for a checkup. September 15th. Once I get to just 20mg one time a day, I'll stay on that dose til I go to Seattle. They'll do a special test to see if my body is producing any cortisol on it's own. If it's not, I'm to continue on the 20mg of hydrocortisone indefinitely. If my body does show it's making cortisol, I can wean down off the 20mg- tho even more slowly than now. By 2.5mg instead of by 10mg. Part of me hopes I'm not making cortisol yet, as that's more likely of a cure. But like I mentioned yesterday, I haven't had this disease as long as some people I know so maybe me producing cortisol is ok for me?! I don't know. I just know I want to be cured from this. It's hard not to worry. . .

In any case, I'm doing fine and I'm helping my mom pack up her stuff and am gonna spend the last couple hrs tonight hanging out with her. She's been such a great help these last 6 weeks. I couldn't have gotten through it w/o her. . .

I made it!

I made it through the night w/o any major issues! I had a pretty bad headache going to bed, but nothing some tylenol PM and an icepack couldn't help. I slept like a baby surprisingly enough too! I only got up once to use the bathroom. It was nice!! I did sleep in late like usual - got up around 10:30am. I had another mild headache and felt woozy and lightheaded, but otherwise ok considering! I didn't know whether to be happy or worried.

Like someone who's had a major disease or illness and the doctor tells them they need to go 3 to 5 years or more to know if they have a cure or if their illness will recur - this is about the same thing. That worry that this disease isn't gone is always going to be there. Especially so early after surgery. It's a double edged sword. I don't want to feel bad, but at the same time I do - so I know that I'm still weaning from the cortisol and my body isn't making any extra.

I wonder if I'll recover quicker than some though because I feel I've only had this disease for the last 2-3 years. Will my body just go back to normal? Nobody knows...not even the doctors. Only time will tell. That is what is so scary. But I'm thinking positive because I AM having symptoms and I do NOT feel good. So for now, it's all good.

I'm not eating a lot as nothing sounds good and my drinking has been less than it has been. I have a headache that's not really going away and I still feel woozy. Nothing traumatic, but symptomatic nonetheless.. :D

We went out to dinner to Tuesdays and I usually get the crab lump burger. But that just didn't sound appetizing. Nothing on the menu did. I ended up getting some chicken fingers and mashed potatoes. Didn't eat them all, but still. Drank 2 cups of soda and a half a cup of water. So that wasn't too bad. Felt weak, but made it through dinner and back home to my chair. I am soooo tired. . .

Weaning Wednesday...AGAIN!! (wean #5)

I felt good again today and actually made it up and stayed up at 8am this morning. I've had some mental issues with this wean and it's given me the runs, but other than that I'm doing ok. I actually couldn't eat much lunch or dinner today. I'm letting this get to me and I shouldn't. It's just another wean. But for some reason, it is. I don't know why. I didn't go anywhere today or do too much, just stayed around home and rested. Figure I need to save up all my cortisol stores.. hehe!

I have a headache now and have hit my point where this is starting to affect me. Or I THINK it's starting to affect me cuz I'm MAKING it affect me. Does that make sense? Ugh. I just need to go to bed. Wish me a nice nights sleep!!!

Slacking. . . and not just in the morning!

I start to feel better and I slack off on my blog. Sorry about that! I've been feeling ok the last two days. Sleeping ok, eating ok, and still drinking/peeing quite a bit. I got up at 10am on Monday and I made myself get up after I took my 8am dose this morning. I came downstairs and I went to get a drink from the fridge. But my mind was a bit foggy/disoriented and I reached a couple times to try to open the fridge before I finally opened it. It was weird. Then I went back to my chair, wrapped my blanket around me and sat with the kids to watch tv. I didn't think I would actually fall back asleep - but I did. I actually did! I couldn't believe it.

This wasn't like I was just tired and needed more rest sleep. This is just like my body is not awake and functioning and it needs to shut down to recoup. My daughter had an issue in the bathroom and I was able to get up and help, but then went back to my chair and FELL BACK ASLEEP. I slept til 10am when I finally forced myself to really wake up. I ate some breakfast and then went to take a shower. I felt much better after that. Mornings are tough tho!!

The rest of the time has been fairly uneventful. Monday I went "shopping" for the first time. Mom, the kids and I walked around Target for a little while. I did ok, but was feeling weak after awhile. But was fine. The heat and humidity are tough and make me weak, but otherwise I deal as best as I can. Today I had one of my best friends over with her kiddos and we had a "playdate" with the kids. They had a great time. I felt pretty good the whole time she was here.

So now that my body has adjusted, it's time to wean again. So tomorrow I'm weaning down to 20/20. No evening dose. I don't know if it will hit me until sometime after 9pm. The hydrocortisone remains in your body for about 6 hours. So I will move my afternoon dose from 2pm to 3pm. So that's why around 9pm or thereafter my body is gonna start reacting to not having it's evening dose. I pray I can sleep tomorrow night. But I will enjoy my sleep tonight and try not to worry about it til tomorrow. Easier said than done tho.

Sad Sunday

Slept ok last night, but still got up about 2-3 times to go to the bathroom. And when I got up I felt dizzy and just discombobulated. I was able to get there and back to bed, it was just a weird feeling. I got up to take my 8am dose and fell back asleep until 10am.

I got downstairs, got my drink and breakfast and was feeling ok. Rested in my chair for awhile, then we decided to go out to eat for lunch since my dad was leaving today. I did ok with that, even tho I got emotional that my dad was leaving. (I'm glad he got to visit with us, cuz I know he's been really worried about me! Hopefully he sees I'm doing well!! *wink*)

After we left hubby & my dad (hubby was taking him to the airport for us), we went to the grocery store and I was fine then too. So I'm slowly getting better and am able to get out more. This week I hope to do more with the kids and start driving, since this is the last week my mom is here before she goes home. See just how much I can do. I think it still may be tough, cuz my next wean is to 20mg in the morning and 20mg in the afternoon. I will lose my evening dose completely. I am sooo not sure how that will go over and am quite nervous. But I digress. . .

In any case, we came back home and I watched the kids play in the pool for awhile to get some fresh air. It was just so hot/humid out, I didn't stay out long. We ate dinner and then I go back to my chair. I am about to help hubby put the kiddos to bed tonight. Then I'll go back to my comfy chair until I decide to crash for bed.

And yet another weekend...

I was restless last night and got up to pee about 4 times. Ended up drinking 3 cups of water last night. I don't know WHY I get so thirsty at some times and not others. In any case, I ended up feeling ok when I got up to take my 8am dose, so I just got up. With the help of hubby of course prodding the need for a shower. While I'm not one to go w/o a shower, I have to tell you it's nice to go a day w/o one when the BO isn't as bad anymore or my hair or body isn't as oily anymore. But nonetheless, it does help wake me up and get me going.

Again, I was feeling ok and I ate breakfast with the family - our weekend pancakes made specifically by hubby! Yum! But after a few hours, I started to feel headachy. I drank some pepsi in hopes to perk things up. I also cooked the cookies from yesterday. But by the time I was done cooking, I was feeling woozy all over. I thought I was going to pass out. I got in my chair and stayed put til dinner. I got tired though, like my morning was coming back to haunt me. I wanted to nap, but was afraid that would mess up my sleep tonight. I'm just going to go to bed early here. Maybe once the kids are down. This headache was not going away either, so I'll have to take an ice pack to bed with me tonight too. . .

Home alone

The kiddos, hubby and my parents went to Six Flags today, leaving me home alone. I just did NOT feel good, so this is alright by me.

I slept ok last night and woke up to my alarm as usual. I thought I could get up, but once the kids were downstairs, I fell right back asleep for another hour. I ended up getting up at 10am and coming right downstairs. They were all getting ready to leave, so I just skipped the shower. I got breakfast and got right to my chair. I just had an overall ill feeling, lightheaded, woozy, etc. I had no energy whatsoever. I had actually hoped to clean up and make cookies for my dad, but it just didn't happen. Well, I did put together the dough for the chocolate chip cookies, but had no energy to put them in the oven and wait. Probably a good idea, cuz I made myself some ramen noodle soup and ended up boiling it all away before getting up to put the noodles in!! NOT good.

Thankfully everyone came home around 8pm and we ended up getting Chinese food. I had some Wonton soup and felt better. Now I'm probably overtired and just need to get myself to bed.

Trippin' Thursday

I can honestly say I've never done any drugs that would make me "trip" but this morning getting up, I swear I was "tripping". It felt like I was floating, like my head and body weren't quite working together. I was weak and lightheaded. Coming down the stairs (at 11am) my legs felt rubbery and shakey. And I had that headache that's right on TOP of my head. I ate my mom's super french toast and that helped. Drank two cups of water and some gatorade to help too.

So I just sat and rested the rest of the day. I felt guilty tho, cuz my dad is in town and him, along with my mom, hubby and the kids went to the local double A Yankees baseball game tonight. I wanted to go with them, but wasn't sure I could make it. It's a lot of walking too which I'm not sure I'm ready for or willing to push myself after just weaning and not feeling so good. So I sit and just rest.

I ate ok today, I slept pretty good last night - even going to bed early! I was asleep before 11pm! I didn't hear hubby come to bed or anything and my alarm was what woke me up. Which was weird that I even slept in so late this morning, but I guess that's what this whole weaning/drug thing does to me. But otherwise I continue with this wean and deal with the symptoms! I have a headache now, so I'll just be going to bed soon with an ice pack and hopefully I'll fall right asleep! Wish me luck!

Weaning Wednesday! (wean #4)

Well, I had no real symptoms after doing all I did yesterday, so I've decided to wean down again. I just took one little pill tonight. I slept ok last night (for the most part anyway, as there were some issues with my son that I kept getting up for). I ate well today and was able to move around and clean up and help hubby put together our new air chamber for our bed that came in the mail today! (Yay!) I'm still thirsty but not overly so. I didn't take my Protonix today, so I'm wondering if that has some extra affect on me regarding why I'm so thirsty/peeing a lot. I read it can. So I might stick to taking it every other day to help with my stomach acid and all that. See if it makes a difference.

Otherwise I stayed home today and didn't do much. I got up early with Max due to his issues. (like 8:30am!!) It hurt that first two hrs, but after that I was ok. I took my shower later in the afternoon, so that helped too. I feel tired now tho and a headache is coming on. Hopefully it's just cuz I'm tired and it doesn't linger due to the wean. *sigh* Time will tell. . . Forward I go!

Feeling good today!

Suprisingly enough, I'm feeling good today! Slept good last night (in Max's room on his trundle bed) and was up fairly early this morning! (9:30am to be exact!) I had a good appetite all day today, tho still drinking quite a bit. I did get out and about today too.

We took Max to get a haircut, then we went grocery shopping (which was a first for me, but we only got a few things!), then we went to the pharmacy (same pharmacy, but different location) to refill one of my other prescriptions, then out to lunch. We came home and rested some, then I skimmed the pool so the kiddos could go in it and I managed to snap some pics. Came back in and rested and then we went out for dinner. I'm resting again and feel a slight headache coming on, but overall I feel pretty good! I did have a few woozy moments while we were out this afternoon, but nothing bad at all.

If all this doesn't catch up with me by tomorrow, I may actually go ahead and wean again. So I'll be down to 20/20/10. Cutting out that evening dose again, so we'll see. I'll see how I feel all day tomorrow before I decide to do that tho. I have no major plans of going anywhere, so I'll know early on if I can wean.

Mundane Monday (and wean #3)

I wish I could say I slept well last night, but my stupid side of our Sleep Number bed decided to deflate on me. :( So I had to sleep on the floor. I was so worried one of the kids would walk in our room and step on me! hehe! Turns out we have a leaky air chamber in the mattress that needs replacing. Sleep Number said they will send it out asap. Problem is, that's at least 3-4 days away. *sigh* As I write this, I'm still not sure where I'm sleeping tonight!!

Other than that. . . I woke up with a headache this morning, but did go ahead with my wean. I took some Excedrin after I showered and ate breakfast. (My breakfast ended up being my lunch, cuz I didn't make it downstairs til about noon.) Still feeling overly thirsty today too.

But I just rested all day and literally did NOTHING. Doesn't that sound like fun?? Ate dinner, had a snack, drank a lot more. Like I said, very mundane day.

Just another rest day. . .

Nothing much to report today. I slept ok last night, but got up 3 times to go potty which is more than I've gone in the last few days. I feel like I'm drinking more than I have been recently. I was going through one cup at night (and by 1 cup, I mean one 20 oz cup), but last night I went through just over 2! I have yet to figure out why this comes and goes. But supposedly it's normal - but I will be asking my doc at my weekly email update to him.

I woke up at 10:30am tho and I did get to shower today, so that always helps me feel better and wake me up!

Other than that I ate ok all day and actually seem to have my hunger back again. Mom actually got us all ice cream tonight from Cold Stone! YUMM!! That was quite a treat and I hope it doesn't come back to haunt me later. hehe! Other than that, I felt pretty good today. Almost "normal" again. I did have a moment that I was standing too long and I felt like I was getting weak and going to pass out, but it passed pretty quickly. And aside from drinking a ton (and peeing a ton) I'm doing just fine I think.

I have decided to go ahead and wean down tomorrow. So I will take 20mg in the morning and 20mg the other two times. From being up and down the last week or more, something tells me I'll be ok. But we'll see. I'll still take it easy for the next day or two until I know for sure how it will affect me. Until then, I'm just going to put my kiddos to bed, watch a movie with my sweetie and then go to bed. Sweet dreams!

Sleepy Saturday

I slept like a baby again last night! I only got up to pee once and there were no issues, went right back to bed and slept til my 8am alarm went off. Could not get myself up before 11am though. Even then, I dragged myself out of bed. Skipped the shower again and went down for breakfast.

I ate well all day today, but do feel like I'm drinking a bit more again. I've been tired and just weak today, but otherwise feeling ok. Hubby took the kids out today. They got to go fishing with him and his father and brother and then they went to his mothers where they went swimming. So it was another mother/daughter day here at home. We did a bit more scrapbooking. But after a little while I just did not feel well. Lightheaded, sick to my stomach, like I may pass out. I had to go lay down. It passed, but it was a weird feeling. I do over think my scrapbook pages, so I guess I pushed too hard. hehe!

I ate dinner (one of my mom's signature dinners that she makes!), had a snack and helped hubby put the kids in the shower and to bed. I went back to resting in my chair and will be off to bed soon. Hoping I sleep well again tonight! : )

Happy 4th of July !!

I hope everyone had a happy 4th! As I type this, the kids, mom and hubby are out at the movies watching that new Disney movie W.A.L.L. E. Fun fun. I am sitting and resting. Last night and today has been a little trying.

I slept pretty good last night, but did get up to go to the bathroom a couple times. My last time, around 4am I had a hard time getting up to go to the bathroom. I didn't feel good at all. I had the shakes, was burning hot, lightheaded, dizzy, queasy and barely made it to the potty to pee. And when I was done, it took me what seemed like 10 minutes to be able to stand back up and get back to bed. Like my mind and body just weren't quite connected. I took some deep breaths and tried to let my body work it out, but it was scary. I got to bed and fell right back asleep, then woke up to my alarm again at 8am. I still didn't feel quite right, but was better. I took my 8am dose and fell back asleep til 11am. I got up after that and came right downstairs. I decided to save my shower for later and go eat breakfast. Hubby made me some oatmeal which was wonderful.

At 2pm, hubby handed me my dose of two pills (each pill is 10mg). As you know, I'm supposed to be on 30mg in the morning, 20mg in the afternoon and 20mg at night. Well I noticed that the pills were different sizes. I thought that was odd!

So I looked at them and one was one number and the other was different. I looked at the pill container and noticed it should've been only the one number. I looked online to see what the other number was and was SHOCKED to learn it was only a 5 mg pill!!!! I have no idea what level I've been taking the last week and half, since I filled that script!!! I never noticed before today!!!

So that's why I have been going back and forth from feeling totally crappy to totally fine! I've been taking anywhere between 35mg to 70mg each day?!?!? I was questioning myself on weaning down again because I just haven't felt good. I'm glad I didn't. I don't think I've gotten down to 35mg, cuz I think that would make me feel REALLY crappy, but who knows for sure.

Hubby reemed the head pharmacist a new one! She gave me back the correct pills that I was missing, gave back our copay for this script and said how sorry she was for the error. That's it.

I called my doctor to tell him what happened and he was beyond upset at such gross negligence. He's not one to cause issues, but he said this is unacceptable. In any case he's glad I didn't get adrenal insufficiency (which is where your body goes into severe withdrawal and could've sent me to the ER) and to get back to the 30/20/20 I was supposed to be on and wait more til I feel better before weaning. *sigh*

So I have no idea what dose I actually took this morning (or for the last week and a half for that matter). But I know I took the correct amount at 2pm and 8pm tonight. Hopefully my body will adjust quickly so I can get back to weaning. I swear if it's not one thing it's another. Grrr.. But thankfully it wasn't worse, cuz I know that could've been BAD.

In any case, I ate a small dinner. My hunger is gone, on top of having had the runs. My poor tummy is taking the brunt of this too. I'm on protonix - which is another med to help adjust all the acids in my stomach, but everything at this point affects it. I just eat my banana and drink my gatorade and that seems to help keep it all under control. I'm resting the rest of this evening and will watch the Macy's Fireworks Spectacular on tv. Happy 4th to me. But ya know what, if it means freedom from this disease, it really will be a happy 4th. :)

Feeling better today

I actually slept well last night and woke up feeling pretty good this morning! Still fell back asleep after my 8am dose, but woke up at 9:30am which is a little better! I got showered - which felt great, and I came downstairs to eat breakfast.

I had a follow-up ENT appt today at 11am to see if that nasty infection is still there, but thankfully it wasn't. I'm done with the antibiotic too. I'll probably still take the Tylenol Sinus because I still have some post nasal drip. She said that was normal in my case because I have a LOT of scar tissue in my sinuses blocking normal air flow. So even tho I'm not congested, I sound like it because of all the scar tissue in the way. I can't blow my nose right, because all the scar tissue blocks what's back in my sinuses. That's out my right nostril where they basically did the surgery from. My left one is fine.

Pre-op I had a slightly deviated septum to the left. Now post-op and due to all the scar tissue, I have a slightly deviated septum to the right. The scar tissue actually grew back and pulled my septum (which is the middle bone in your nose) to the right. Because my septem had been broken during the surgery, the scar tissue just grew back that way. So the ENT is suggesting we wait a few months to let this all heal and then they'll go back and get a CT of what my sinuses look like now. They will probably have to take me in for "day surgery" which is more like hour surgery, to just go in and clip out all the scar tissue, then pack it so I can breathe more freely again. Sucks. But otherwise, she said everything looked good and to just continue with the saline spray to keep things clean/moist.

Other than that, we went out for lunch, then to the grocery store (where the kids and I stayed in the car) and then home. I did pretty good being out and about today. I actually ate a bigger dinner than I have in awhile too. Guess I was hungry! Tonight are the fireworks for the 4th of July in our town and I'm going to try and go. I was going to wean again tomorrow - but have decided to postpone it until Saturday, since I had a rough day yesterday. I don't want to push this too hard and waiting one more day won't hurt. So normally I post later, but this is it for today. We'll let ya know how it goes tomorrow!

Feeling yesterdays events. . .

Well yesterday finally caught up with me. While it took me a little while to actually fall asleep last night, I did actually sleep. I don't think it was a deep sleep, but nonetheless I slept. I only woke up once to pee, so that was good. Or so I thought. I think it came back to haunt me some as when I did wake up at around 7am, I did NOT feel so good. I felt like I was gonna throw up any minute. I HATE that feeling. I went to the bathroom and I wasn't sure whether I was gonna puke or poop. I did neither, but still felt awful. I went back to bed and tried to talk myself out of feeling so bad. I fell back asleep for a little while and woke again at the sound of my cell phone alarm going off to remind me to take my morning dose. I thought that might make me feel better, but it didn't. I had a small headache on top of that too, right on the top of my head. It was a weird spot.

I eventually fell back asleep again and slept til about 11am. I made myself sit up in bed and asked my mother to bring me breakfast in bed. She makes the best french toast. She just loves me so much! ;) I thought the bread would help soothe my tummy and the protein in the egg would give me an energy boost. And of course the sugar in the syrup will help with the energy as well. It did help. I managed just to get myself downstairs and sit in my chair. I decided to hold off on the shower today as I wanted to get some gatorade (aka electrolytes) in me and know the food was staying put.

I'm not sure if it was withdrawal symptoms, dehydration symptoms, or a combination of both on top of doing too much yesterday. Dr. L told me that sometimes we feel good and feel like we can do a lot, but learn a day or more later that we couldn't. So this is still a learning curve for me. All I can do is go through it and learn as I go though.

I stayed put in my chair the rest of the day and just felt "ill" all day. Yay for me. hehe! I asked to feel bad and so be it. I ate ok the rest of the day though. And my drinking seems to have gone down yet another level. Like I'm not craving it as much again. I might drink 1-2 gallons and I might have had only a gallon today. Not sure if that's part of all this as well.

I did have another episode of feeling like I was going to be sick, (sorry TMI) but this time it came out the other end. But the stomach cramps really make me feel like I was going to vomit. I HATE that feeling. (Did I mention that earlier that I hate feeling pukey! hehe!) I ate a banana tonight for snack and hopefully that helps. Not sure how I'll sleep tonight either, seeing as how I slept the morning away. Cross your fingers for me.

It's JULY already and I'm 4 weeks post op!

I swear this year has just flown by. I went to Camp Cushie in February hoping to find out what was wrong with me after local docs had given up on me; and in a week I did and was planning for surgery. Because we were going to Disney in May, I had postponed the surgery til June, which seemed so far away at the time. I should know better, that the time passes before you know it. And here I am 4 weeks postop and in the process of weaning off the steroids for good.

Anyway, I didn't sleep much at all last night. I was very restless. Tossing and turning. But I decided to just GET UP this morning after my 8am dose. Still no big symptoms since I went down yesterday. I was actually somewhat bloated last night and I found one pimple on my arm. So again the fear that this surgery might not have worked is on my mind. I also wonder how my menstrual cycle affects all this, as this would be the week I'd have it. Except I don't. Maybe I'm getting the symptoms, just not the actual thing. Who knows. I need to stop overthinking all this.

I'm exhausted though and I'm hoping that will lead to a good nights sleep tonight. We did get out today to take hubby to the train station. And I went in all by myself in the post office to drop off a package for hubby. Still felt fine, albeit weak and just tired. I still feel like I can't even walk around much. Like if I did, I would pass out. But I have yet to push myself to that point, so I don't know WHAT would happen. Gah!

Still eating and drinking ok. I do have a mild headache, but I think it's more from being tired than an actual withdrawal symptom. I took an excedrin late this afternoon to help as I couldn't take it anymore.

And I decided to suck it up tonight and go out to dinner for the first time since surgery with my family. Not far, just around the corner to the local pizza joint. Wasn't in the mood for pizza, just had a small sandwich. I felt woozy and lightheaded the whole time, but I did it and made it home w/o any issues. Plopped myself in my chair and have stayed put there. I am off to bed as soon as the kiddos are down. I'm just exhausted. Pray that I sleep well tonight!

But I'm 4 weeks postop today and still counting. . .