Ya know I wish I could say that my sinuses were all fixed up and I'm feeling great... especially since in my last post over 2 months ago I was told they were getting me the "next available" appointment to see an ENT, but apparently ENT docs are very busy people!
I finally got in to see the the ENT November 4th! After looking at my ct scan the first thing he said was "I'm gonna cut the bullcrap, your sinuses are $h!t!" (haha yeah and the first thing J could say was "I like this guy") But then he proceeded to let on like it wasn't really that bad. Apparently I'm in the 30% of people that do not have sinuses in their forehead. Which is great news! I always wondered why my forehead never hurt when I had a sinus infection (not complaining). Also my sinuses right behind my eyes look completely clear so he won't have to mess around back there (because there is a slight risk of having vision problems after). But my sinuses in my cheeks look pretty bad. He said it didn't look like there was much puss in there, they're just swollen (he said I had a mild infection) so he doesn't think he needs to go in and medicate them everyday.
If it was up to him I would come in that day, have the procedure, and leave. But since I have cf and my clinic usually wants their cfers to do a course of IV's I will be admitted to the hospital November 29th get blasted with some IV antibiotics and have the surgery on the 1st. Probably leave that day or the day after and finish my 2 weeks of IVs at home.
The part that worry's me is that he mentioned breaking 2 little bones that I "probably won't feel" then put the plastic tubey things in. I'm not too hip on having bones in my nose broke... or any bones for that matter. Also I get to see alot of him. I have to go back a week after, then 2 weeks, then a month, and "eventually" I can schedule visits along with my cf appointments. I live a long way away from Lexington so I'm not looking forward to running back and forth so much. I mean gas pretty freaking expensive and I NEED Christmas money as it is.
Honestly though I can't believe I will have had to wait 3 months for a sinus surgery!
Wednesday, November 17, 2010
Monday, September 13, 2010
Clinic Update
I'm so happy we finally have a plan!
I have felt like crap since February, been on oral antibiotics 3 times (my usual is once every year to 18 months). I've had a horrible sinus infection and on top of all that I had to catch J's stupid cold! So I really didn't have high hopes for this visit. In fact I was terrified (ugh blood pressure was 160/101). My cough sounds like a mix between a duck honking and a dog barking! So I just knew what was coming....
First of all I got to see Dr. Kanga today!!! I haven't seen him in ages he was my pediatric doctor. I miss him so much!
Anyway....PFTs were down a smidge to 77% now I am not in the least bit happy about this but the docs considered them "stable" since last time they were 78 and one point really isn't much difference, especially since my lungs sound clear. I am not happy because my numbers were 82 then 79 then 77 then 78 and now 77. I don't like being outside of the 80s, heck I don't like being under 90!
Next thing they told me, my ct scan looks horrible... big shocker there! They were actually surprised that my lungs weren't affected more because my sinuses were so bad. I guess that's probably because I've been working my @$$ off. Doing extra treatments, vesting 30 minutes at a time instead of 20 and sometimes 3 times a day, asked J to "beat me" many times and upped my hypertonic saline to twice a day (although my doc told me I didn't "need" it more than once) And not to mention my time on the eliptical.
So I'm being referred to ENT for a sinus surgery. I will come in to the hospital 2 days before the surgery and start IV antibiotics then I will have the surgery and stay 5 more days while the ENT doc cleans and medicates my sinuses every day then I will go home and do another week of IVs.
I'm a little worried about the pain involved but I have to say I'm excited. Because one this is just for my sinuses and not my lungs, they think my lungs are fine (I disagree because my oxygen sats were 95 and they're usually 98 to 100 so that's low for me but apparently it's still normal...) just issues from all the drainage. Two I'm finally going to feel better. And the big one I'm waiting to see what this does for my lungs. I'm getting the big guns finally. I remember what it was like the first time I did Cipro my pfts skyrocketed past baseline. So maybe this is the oomph I need to help me continue raising my pfts to where they need to be. Although the huge PICC thing still scares me to death. I've known for the past 7 or 8 months that I needed IVs and the fact that my fvc is so far away from my fev1 worries me (fvc=102). I'm just looking forward to getting this over with, kicking some pseudomonas butt and getting on with my life... I have plans y'all and I don't really enjoy cf dropping by when I'm busy trying to make those plans happen!
Anyway I got new asthma meds which is great cause asmanex sucks. They gave me like 3 months worth of symbicort samples to try. I've heard great things about this one so I'm really looking forward to not having my rescue inhaler attached to me at all times! Oh and my last labs showed I was a little low on vitamin d so there's another pill to add lol.
I think that's about it for clinic. I still can't believe I'm taking having my very first IV antibiotics ever so well.....
I have felt like crap since February, been on oral antibiotics 3 times (my usual is once every year to 18 months). I've had a horrible sinus infection and on top of all that I had to catch J's stupid cold! So I really didn't have high hopes for this visit. In fact I was terrified (ugh blood pressure was 160/101). My cough sounds like a mix between a duck honking and a dog barking! So I just knew what was coming....
First of all I got to see Dr. Kanga today!!! I haven't seen him in ages he was my pediatric doctor. I miss him so much!
Anyway....PFTs were down a smidge to 77% now I am not in the least bit happy about this but the docs considered them "stable" since last time they were 78 and one point really isn't much difference, especially since my lungs sound clear. I am not happy because my numbers were 82 then 79 then 77 then 78 and now 77. I don't like being outside of the 80s, heck I don't like being under 90!
Next thing they told me, my ct scan looks horrible... big shocker there! They were actually surprised that my lungs weren't affected more because my sinuses were so bad. I guess that's probably because I've been working my @$$ off. Doing extra treatments, vesting 30 minutes at a time instead of 20 and sometimes 3 times a day, asked J to "beat me" many times and upped my hypertonic saline to twice a day (although my doc told me I didn't "need" it more than once) And not to mention my time on the eliptical.
So I'm being referred to ENT for a sinus surgery. I will come in to the hospital 2 days before the surgery and start IV antibiotics then I will have the surgery and stay 5 more days while the ENT doc cleans and medicates my sinuses every day then I will go home and do another week of IVs.
I'm a little worried about the pain involved but I have to say I'm excited. Because one this is just for my sinuses and not my lungs, they think my lungs are fine (I disagree because my oxygen sats were 95 and they're usually 98 to 100 so that's low for me but apparently it's still normal...) just issues from all the drainage. Two I'm finally going to feel better. And the big one I'm waiting to see what this does for my lungs. I'm getting the big guns finally. I remember what it was like the first time I did Cipro my pfts skyrocketed past baseline. So maybe this is the oomph I need to help me continue raising my pfts to where they need to be. Although the huge PICC thing still scares me to death. I've known for the past 7 or 8 months that I needed IVs and the fact that my fvc is so far away from my fev1 worries me (fvc=102). I'm just looking forward to getting this over with, kicking some pseudomonas butt and getting on with my life... I have plans y'all and I don't really enjoy cf dropping by when I'm busy trying to make those plans happen!
Anyway I got new asthma meds which is great cause asmanex sucks. They gave me like 3 months worth of symbicort samples to try. I've heard great things about this one so I'm really looking forward to not having my rescue inhaler attached to me at all times! Oh and my last labs showed I was a little low on vitamin d so there's another pill to add lol.
I think that's about it for clinic. I still can't believe I'm taking having my very first IV antibiotics ever so well.....
Friday, September 10, 2010
My Little One Is 2
Last Sunday my baby girl turned 2 years old. We celebrated with a party at our house, nothing big but she still had a lot of fun and got plenty of stuff.
(My princess on her birthday)
Isn't she just so beautiful
She was loving her new wagon. Well her and her cousin both were. They screamed if you stopped pulling them around lol
This is what we got her. She loved it. When she got on it in the house she ran into a wall and then another wall lol.
And I love this pic of my baby sister. She looks so cute pregnant :) She's about to pop with her second one (I'm a little jealous)
(My princess on her birthday)
Isn't she just so beautiful
She was loving her new wagon. Well her and her cousin both were. They screamed if you stopped pulling them around lol
This is what we got her. She loved it. When she got on it in the house she ran into a wall and then another wall lol.
And I love this pic of my baby sister. She looks so cute pregnant :) She's about to pop with her second one (I'm a little jealous)
Friday, August 13, 2010
It's Been Awhile......
I have meant to write this blog for months now, there's just been too much going on. For months I had been in a constant state of depression, cf wasn't behaving, and well lots of other issues that I don't really feel comfortable discussing on my blog.
As long as I am being halfway compliant with my meds I don't get sick and need antibiotics (or if I catch a cold). I usually get sick once every year to a year and a half and Cipro has always taken care of it. But so far in 2010 I have been on antibiotics 3 times from February to June! Which is a lot for me! I was completely compliant each time I got sick. So with everything else that's going on and cf making me feel helpless I've been a total wreck. This last time I was on Avelox and I could actually tell a difference, but maybe not enough that I feel great!
But my sinus' are infected and a mess and they don't seem to be getting any better and i'm pretty sure that's what is infecting my lungs. I have a ct scan scheduled for the 13th of next month (which is my first one ever). Honestly I feel like I'm long overdue for a surgery and some IVs. That's really hard for me to think about because I've never Had to have IVs and I guess I feel like that would mean that I'm getting worse and makes me wonder would it be that I'd have to start going to the hospital all the time? I guess if I had grown up going in from time to time I'd be used to it and it wouldn't be a big deal. But i've spent 24 years healthy and never really had any issues as long as I took care of myself.
Because of everything that's going on and me worried about my health I have started having anxiety attacks. I had no idea what was wrong with me but all I could think was I was suffocating. I thought it was my cf... who knew your mind could cause something like that? It just so happened that clinic called me back in the middle of one of these anxiety attacks and I think they thought I was crazy because for the next few days afterwards someone from clinic called me everyday to see if everything was ok and if I needed to talk about it.
And here's another thing........ this is one of the things I've been stressing about.... It's really hard for me because I don't want to seem greedy, but I want another baby!!!! I know I have a healthy baby girl and a lot of cfers Never get that, and I know I should be happy but I can't help it! I see her playing alone and I keep thinking that I don't want her to be alone. I want her to have someone, I mean I can't live forever (obviously) And maybe I want another one for myself too.
In fact I apparently wanted one so bad that I went through a phantom pregnancy for 4 whole months!!! I felt something kicking me all the time. I know that sounds crazy and it had to be gas but I had never felt gas like that, and it was just like when Lily was in my belly. I mean I could see my tummy move. But it wasn't just that. I had a few other pregnancy symptoms including leaky nipples, yeah it was weird. I had like 20 negative pregnancy tests but I couldn't convince myself. Luckily I didn't tell that many people (because I knew at the time I was losing my mind). I kept reasoning with myself and then I'd have the symptoms again and I would go back into this state of knowing it wasn't possible but couldn't stop believing it.
I know I sound completely nuts right now but I'm pretty sure it had something to do with the birth control I was on (Mirena IUD). I met other women on some health forums with the mirena and having the same "movements" and all the other symptoms and they had negative tests as well. I swear from the minute I got the Mirena, I just didn't feel "right". I had all kinds of "wonderful symptoms" that I won't go into on here but one in particular was it made me crazy. I was an emotional wreck.
Oh or the fact that I gained 30 pounds on top of my healthy weight! I'm 160 pounds right now! I know being a cfer I should be happy with weight gain but I would've been ok with 10 pounds but 30 is freaking crazy. And it doesn't help my stupid cf lungs have to carry all this extra weight around! I feel like a cow and well feeling disgusting doesn't really help this whole depression thing either..... Especially when my doctor tells me he doesn't "necessarily" want me to lose any but to not gain anymore and I needed to get into shape and gain more muscle. He was actually really nice about it, I mean it's not something I didn't already know. I just never thought I'd hear a doc say that to a cfer. The weird thing is I'm not all super hungry like i used to be and I don't eat that much.
So if any of you Cfers out there know any "healthy" diets let me know! Because I want to be smart and not get sick.
As long as I am being halfway compliant with my meds I don't get sick and need antibiotics (or if I catch a cold). I usually get sick once every year to a year and a half and Cipro has always taken care of it. But so far in 2010 I have been on antibiotics 3 times from February to June! Which is a lot for me! I was completely compliant each time I got sick. So with everything else that's going on and cf making me feel helpless I've been a total wreck. This last time I was on Avelox and I could actually tell a difference, but maybe not enough that I feel great!
But my sinus' are infected and a mess and they don't seem to be getting any better and i'm pretty sure that's what is infecting my lungs. I have a ct scan scheduled for the 13th of next month (which is my first one ever). Honestly I feel like I'm long overdue for a surgery and some IVs. That's really hard for me to think about because I've never Had to have IVs and I guess I feel like that would mean that I'm getting worse and makes me wonder would it be that I'd have to start going to the hospital all the time? I guess if I had grown up going in from time to time I'd be used to it and it wouldn't be a big deal. But i've spent 24 years healthy and never really had any issues as long as I took care of myself.
Because of everything that's going on and me worried about my health I have started having anxiety attacks. I had no idea what was wrong with me but all I could think was I was suffocating. I thought it was my cf... who knew your mind could cause something like that? It just so happened that clinic called me back in the middle of one of these anxiety attacks and I think they thought I was crazy because for the next few days afterwards someone from clinic called me everyday to see if everything was ok and if I needed to talk about it.
And here's another thing........ this is one of the things I've been stressing about.... It's really hard for me because I don't want to seem greedy, but I want another baby!!!! I know I have a healthy baby girl and a lot of cfers Never get that, and I know I should be happy but I can't help it! I see her playing alone and I keep thinking that I don't want her to be alone. I want her to have someone, I mean I can't live forever (obviously) And maybe I want another one for myself too.
In fact I apparently wanted one so bad that I went through a phantom pregnancy for 4 whole months!!! I felt something kicking me all the time. I know that sounds crazy and it had to be gas but I had never felt gas like that, and it was just like when Lily was in my belly. I mean I could see my tummy move. But it wasn't just that. I had a few other pregnancy symptoms including leaky nipples, yeah it was weird. I had like 20 negative pregnancy tests but I couldn't convince myself. Luckily I didn't tell that many people (because I knew at the time I was losing my mind). I kept reasoning with myself and then I'd have the symptoms again and I would go back into this state of knowing it wasn't possible but couldn't stop believing it.
I know I sound completely nuts right now but I'm pretty sure it had something to do with the birth control I was on (Mirena IUD). I met other women on some health forums with the mirena and having the same "movements" and all the other symptoms and they had negative tests as well. I swear from the minute I got the Mirena, I just didn't feel "right". I had all kinds of "wonderful symptoms" that I won't go into on here but one in particular was it made me crazy. I was an emotional wreck.
Oh or the fact that I gained 30 pounds on top of my healthy weight! I'm 160 pounds right now! I know being a cfer I should be happy with weight gain but I would've been ok with 10 pounds but 30 is freaking crazy. And it doesn't help my stupid cf lungs have to carry all this extra weight around! I feel like a cow and well feeling disgusting doesn't really help this whole depression thing either..... Especially when my doctor tells me he doesn't "necessarily" want me to lose any but to not gain anymore and I needed to get into shape and gain more muscle. He was actually really nice about it, I mean it's not something I didn't already know. I just never thought I'd hear a doc say that to a cfer. The weird thing is I'm not all super hungry like i used to be and I don't eat that much.
So if any of you Cfers out there know any "healthy" diets let me know! Because I want to be smart and not get sick.
Tuesday, April 13, 2010
Monday, April 5, 2010
Unexpected Bliss
Is having a giveaway!!!! Go to
http://www.unexpectedbliss.com/2010/04/01/trying-to-give-back/
They're giving away an awesome Nikon D40!!!!
The giveaway is opened until Tuesday!
http://www.unexpectedbliss.com/2010/04/01/trying-to-give-back/
They're giving away an awesome Nikon D40!!!!
The giveaway is opened until Tuesday!
Friday, April 2, 2010
Flashback Friday
Welcome to Flashback Friday! The idea is to post about anything in your past. Put up pictures of yourself in embarrassingly dated clothing. Tell the story of something that has happened. The arena is wide open. Chose any medium you wish, but focus on some element of your past that you wish to share.
I was going through old pictures earlier deciding what to post, and I realized something my parents took a lot of pictures of us at Easter. And since Sunday is Easter I thought I would share a few of my Easters through the years....
Me and my little sister.... not sure the year but A LONG time ago. My mother always loved to curl my hair, and they called my Curly Sue ( my middle name's Sue).
I was around 5 or 6 here , and that's my mom (isn't she so pretty) and my little sister again
This was after I had my hair permed... but it kept falling straight... I think it may have been the meds I was on...
Me and my sis and my daddy. And since every year we kept losing all our eggs in those dinky baskets from Walmart, mommy made these for us... they lasted a Looonnnnggg time lol
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