Tuesday, June 30, 2009

Saline Recipe Continued

Well I am inhaling my home made 3% and I think I need to add more sea salt next time. It isn't making me cough like the Rx kind usually does. I wonder if I can just add it to the already made stuff or if I have to wait until next week...

But at least I am not dying from it LOL!!!!

Monday, June 29, 2009

Saline Recipe

I am attempting to make my own 3% saline for inhalation this evening and I thought I would share my recipe I received from a fellow CFer, Tara. It is cooling down right now so we will see how it works tomorrow night. Hopefully I done good LOL


Ingredients/Supplies

1. Sea Salt (without Iodine)

-you can find this at your grocery store

2. Gallon of Distilled Water

-again, found at the grocery store

3. 1 Liter bottle

-Look at your drugstore. You want one that is thick enough to hold hot water without melting the plastic

4. Pot to boil the water

5. Measuring spoons (teaspoon) *note 1 gram sea salt is approximately equal to 1 teaspoon sea salt

For 7% saline you add 7 grams of sea salt to 1 Liter of distilled water. (technically you should also add 7 extra teaspoons of water to get exactly 7% solution.) Mix the water and the sea salt. Bring it to a boil and then let it cool. You can even do this in the microwave for added convenience!

Store the bottle in fridge, tightly sealed

I would recommend making a new batch once a week. I would also recommend pouring from a new bottle of distilled water each week. It's very cheap and very easy. And if you want a stronger or weaker concentration just change the amount of sea salt. For example, for 3% solution use 3 grams sea salt in 1 liter of water. For 10% solution, use 10 grams sea salt in 1 liter of water.

Breathe Easy Trent

We lost another CFer this weekend. I feel for his girlfriend Nicole as she has been posting on this site getting information for him. I had no idea he was as bad as he was.

CF sucks.

Rest now Trent and hugs and prayers to Nicole and Trent's family!

Thursday, June 25, 2009

So much to update you all on - ADDED VIDEO

It has been way too long since I blogged! It has been a super busy 7 days!

The end of last week we learned our good friend Courtney was in the ICU with major swelling. They put her on a vent and dialysis to get the swelling to go down. Her kidneys have stopped working or something along those lines. So far it is working and the prayers are coming in left and right! Her sisters started a blog so they could keep us all updated. I am so very thankful for this! I met Courtney last year and she is so sweet. I’m worried about her and I want her to get better so she can get the new lungs she needs. You can read all about her at this site. I also saw a rainbow last night and I swear that it is a sign that she will make a full recovery!

I forgot to mention that another friend of ours recieved her double lung transplant on Saturday night / Sunday morning!!! She has been waiting over a year and has been on O2 for 10+ years! Meghann is doing great so far and I can't wait until she is off the vent and can tell us all about it!

Last weekend was the CF2Chat meet up at Patti’s house. We have a flipping blast!!! I am posting some pictures so you all can see. Tina, Shawn and Kevin came in from Boston. Graves came in from Long Island and then me from the Philly area. Everyone got up there Friday night except Kevin who came in on Saturday. We just joked around Friday night and really got to know each other. It was like old friends meeting up again after a time apart. I have met Patti, Nate and Graves before but never Tina, Shawn and Kevin. But I have talked with them in chat and online. There was no awkwardness at all! I love these guys. They are extended family haha. Saturday we had good food and just a blast. Tina and Shawn had brought their Boston Terrier with them and he was having fun getting to know Patti and Nate’s dog Abbi (neither are fixed BTW – see video). Sunday was Father’s Day so we all shuffled out to a buffet breakfast that was phenomenal!!!!!!! It was so delicious. Afterwards we were able to take some funny pictures of something that came out in the open a few months ago about a “friend” on the CF boards. I won’t go into detail but he has an obsession with face masks. We couldn’t resist!

I was sad to leave the group and head back home. I missed Maggie and I knew I had tons of stuff to do, but I wanted to keep chatting and hanging around everyone. It was definitely the most fun I have had in a long time! Good food, good friends, good conversations. There is nothing else you need in life!

Yesterday was a fantastic day too! I got to see my friend Linda who I haven’t seen since 2002! We met when I lived in Georgia back in 1992! We have stayed friends ever since. I was only down there for 4-5 months and here we are 16 years later and STILL friends! Can you believe it?! I can honestly say she is my oldest friend (as in known her the longest). She got to see my mom again after 16 years too. And I got to meet her hubby and 2 kiddies. They are so stinking cute I could gobble them up! We went to the Please Touch Museum in Philly so that the kids could have something to do. My SIL and nephew came along so B could have someone to play with. It was a blast! I am only posting the picture of her and I on here but if you are friends with me on Facebook I posted the rest. It was so great seeing her yesterday. Her hubby is from North Jersey and they come up every year to see his family. We were finally able to coordinate it so we could get together.


video

Monday, June 15, 2009

A rough weekend in the world of Lung Disease

This weekend was a rough one in the CF world. We lost 3 people to this disease.

Ava, Neeshy and Mason – Breathe Easy now.

Ava was only 15 years old and had received her double lung transplant last week, only to pass on Sunday morning from complications.

Neeshy was young as well. I was not aware she was sick until she passed…so sad. She had just begun the transplant evaluation process.

Mason I never got to talk to but Q was talking about him Saturday night in chat and then Sunday he passed. If I remember correctly Mason had PH and a lung transplant and was waiting being listed again because of complications. He was in his early 20s.

It saddens me to read about these deaths. It frightens me that I might have to say goodbye to more friends at some point. When Jenn passed it hurt like hell. I was not as close to her as some but she was my first real CF death. I had lost other people I chatted with once or twice but nothing to the extent of talking almost every night in chat and exchanging text messages, like I did with Jenn. I think about her often and find my self always going to click on her name on Facebook for a cause or such to invite her to.

I worry about all my CF friends (and my non-CF bibliophile friend). Those that are post transplant, those that are waiting new lungs, those that are soon to be listed, those getting close to evaluation and those that are “healthy” in the CF world.

I never worried about CF deaths before. I had never known anyone else with it. There was a risk I was taking by joining the forums and befriending so many people, but I did it anyway. I would never trade what I have for anything in this world. The friendships I have made with some of my fellow cystics are remarkable, and I cherish each of them. Some of these people I may never get to meet in person but they have touched my life in ways that some of my RL friends never will.

I love each and every one of you. Losing a cystic sucks but it also reminds us that what we have with each other is so very precious and we should treasure it everyday – CF or not.

Friday, June 12, 2009

Having a bad "baby" day

Ugh I am so bummed out today. I had this amazing dream last night…extremely weird but amazing. I was pregnant, only about 4-5 months and I had a tiny little belly. The weird thing was when the baby would kick I could see the whole foot push out of my tummy (still inside I would only see the imprint through my skin) and it would bend me over cause it was uncomfortable. But I could see that little tiny foot like it was my own. I was very happy to be pregnant in my dream even if I was dreading telling my CF dr about it. It was so real. I remember rubbing my belly and talking to it. Being SO sure that it was a little boy because of how strong he was kicking.

Then today I came into work and my cubby buddy and I were talking about her pregnancy and she was showing me this magazine that has the baby at different months and what they look like. She starts her 6th month next week (I think) so she showed me what little Baby M. will look like. It’s a baby!!!! And adorable!!!! You could see every little feature on its face and see the hands and feet and arms and all. It made my heart hurt....

I know I have accepted the fact that I will never have a baby of my own but I still want one. I still long to know what it’s like to feel your child growing inside of you, to feel the first kick, the first roll over, the first everything. I want to experience all those things. I wish I could know what its like to go through labor and look down on your child for the first time when the DR hands them over. I wish I would know what its like to watch as your child grows and rolls over for the first time, crawls for the first time, walks for the first time and talks for the first time. I can see these things with my friends’ children, but it is so much different when it is your own.

I have never spent so much time with someone pregnant as I do now. Sure I have had friends and family pregnant but I am with my cubby buddy 40+ hours a week. When she feels a kick or something she tells me. I adore when she does, since I won’t get to feel it myself, but it does make me hurt. It’s a reminder just what CF is taking from me. Yet another dream of mine down the drain and out the door. I am super excited for her and I love hearing about everything. I can’t wait until she is really showing and I can see it all (perhaps it will make me glad I’m not having kids LOL). I love that I can experience it second hand and I love that she and I are close enough that she will willing to share it all with me.

I don’t like dwelling on the negative but today I can’t help it. I have 3 pregnant people in my life right now, and one who just had a miscarriage. It’s all around me, everyday. What I long for and what I desire most, and how I will never have it.

Please don’t tell me that I might someday. No, it will never happen. I am too sick to have a baby now and after transplant it is frowned upon and I wouldn’t risk my life and the life of my baby to achieve a dream like that. Today is just one of those days where I can’t put the pain behind me and forget about it. Today it is staring at me full force and I am trying to stare back and win the battle. So far, pain is winning. My heart hurts and my head is yelling at me.

Wednesday, June 10, 2009

Lovely Blog Award

Thanks Carrie for giving me this award!!!!!

My blogger for some reason won't let me add hyperlinks but you can find all my awardee's on my blog list! I let it sit for a day hoping I could add it now but it still won't work!!! Argh!

Here are the rules:
Post a new blog with the award and the person who gave it to you.
select 15 people you want to receive this award. Let them know by posting on their blog.

Here are my 15 in no particular order:

Rhi
Bree
Piper
Shannon
Talana
Tina
Tara
Kelly
Aspen
Jamie
Patti
Christy
Jessi
Lisa
Alice

Tuesday, June 9, 2009

Considering SSDI

I’ve been considering SSDI A LOT lately. Way more than I should be I’m sure. I am just so freaking tired of getting up at 5:15 four days a week and not being able to sleep 8+ hours a night because I can’t fall asleep. However, I am hoping that when I get into my mom’s, things will die down in my head – since most of my sleep issues are self inflicted. I did buy Melatonin like everyone suggested and took that. It worked but I took too much. Now I am afraid to take anymore, even making the dose smaller, because I am exhausted. Though, I am considering taking it tonight so I can be sure to sleep.

I also keep thinking about everything that I could be doing instead of sitting here at work 10+ hours a day. I don’t get to see my friends nearly as much as I would like. I don’t get to see my family nearly as much as I would like. And I don’t get to do the fun hobby things that I want to do. Also, I’m scared to death to go back to school because I’m afraid that I will run myself ragged and make myself sicker. I’m worn out and worn down and so so so bloody tired!!!

If things were different and I could sleep on my days off maybe I would not be so inclined to go out on disability. Unfortunately, if I sleep late on Wednesdays then I can’t fall asleep that night and it turns into a huge snowball effect. Same with the weekends; Saturdays I can sleep in but one day out of 7 is not refreshing.

This boring, never ending project I’m working on has a lot to do with it as well. I’m sick of looking at it and see no end in sight. Every morning I get up and dread coming in to work on it. I can’t do work I don’t like, I’m not made of that material. I need to like it and right now I don’t. I don’t mind it so much; I just don’t want to do it anymore. I like the job itself, just not this aspect of it.

If I can last until the fall I will be ok financially. By then I will have been in my mom’s a few months and she will be back on track. I will be getting money in November from a CD I invested which can help pay for COBRA. I also have the money from my 401k that I am more than willing to use to help make the payments as well. Furthermore, I am hoping that maybe I can go on LTD until SSDI kicks in and then cancel the LTD and do straight SSDI. Getting a part time job that pays a couple hundred more a month would really help too. I wish I could talk to my LTD company without raising any red flags and get all my questions answered.

I just need to make quite a few lists to get me thinking. And figure out what I can afford and can’t afford. What my options are and if this is feasible at all.

A part of me wonders if I am just being lazy and not wanting to work, so I’m using this as an excuse. But thinking about it, is it really that big of an issue? Why should I care if I’m lazy and don’t want to work. I don’t have the next 45 years to work to save for retirement, so why can’t I spend what I do have left, retired? I wasn’t brought up that way, nor do I have that mind frame of working is why. I’m a hard worker; I was taught you don’t get what you want without working hard for it. So how do I change that frame of mind and accept that I might have to stop now, while the going is good. Or that I might not HAVE to but I should WANT to.

This is a huge step for me since I was so hell bent on working until my Jeep was paid off. I still have 2 years left as of this month. I refuse to give it up and would much rather default on my credit card than give back my Jeep. But I also have student loans that need to be paid. Those I am sure I can get the payments down if I am not working and only collecting.

Another issue in my head is being able to get loans for school if I do this. Will they allow me to borrow money knowing I am not working and might not go back after I finish school? I will go back to work as soon as I can after transplant, but who knows how long until that happens. How can I be sure I will be able to afford school? Getting grants would probably be easier than when I am working so perhaps I won’t have too much to worry about.

As you can see I am mighty torn. But I am finally at a place where I am truly considering it and might even be excited about it. I still have a lot of things to work on but the road isn’t quite as bumpy as it once was.

Wednesday, June 3, 2009

I fucking hate CF

I am so frustrated with CF right now. I just want to be normal. I am so fucking sick and tired of being sick and tired. CF is hindering my nomadic tendencies. I am a roamer at heart. I like to move. I like to try new things. I like to live everywhere. I can’t do any of these like I used to. I can still try new things, with exceptions of course. I can live wherever I please I just have to make sure I will have decent medical and prescription coverage. Moving is a whole other story. I enjoy packing and moving boxes. I enjoy setting up shop in a new place. But I can’t do that anymore. I should have remembered from October when I moved that it was hell taking boxes to my mom’s and my current place. But I didn’t learn. I have spent the past few weeks moving a box here, a bag there. Slow and steady. Yet I find myself more and more worn out as I do this. Take today for instance. I put the few things in my jeep that I wanted to take over; 2 closet organizers which are very light, a clothes basket with sheets, my yarn basket and my portfolio case. Nothing heavy, nothing overly large. I was ok getting them in, I only took a few breathers. As the day wore on and my nebs wore off I found myself lying in my soon to be new bedroom, on the floor gasping for air. Fabulous. Lovely. I even took 3 hours to do it all. Not like I rushed.

I am just so fucking sick of it all! I want one day where I am normal and can fucking breathe for once! I don’t want a headache, I don’t want to cough till my lips are blue, I don’t want to gasp for breathe just cause I am taking a basket of sheets up the fucking steps!

I want off of this roller coaster!

Sorry for the blog ranting but we all have our days right? I am signing off now to hook up my O2 and read some more before heading to bed.

Monday, June 1, 2009

Can't sleep so I'm blogging

As the title says I can't sleep. Last night I was exhausted so I passed right out even after consuming 4 sodas (I RARELY drink soda because the caffeine keeps me awake). But tonight I can't fall asleep. I had 2 and that was it and one wasn't even caffeinated. Oh well :)

Today was fun so was yesterday. It was little Owen's first birthday! I ran around with the kids a bunch and tried to breathe, it was fabulous. Only had 2 coughing spells that turned heads haha! Then today I had one at Kim's that made her ask if I was ok. She never does she knows I'll be fine unless I'm blue. Well I turned blue. My lips and fingernails were a nice pale bluish purple color. Awesome. These dam spells are happening 2-3 times a day and at work too. I hate having them at work. Makes me feel sicker and shows I'm sick. I'm weird. :)

So tomorrow looks like I will call the DR and see if I can start Colistin. I do not want to do TOBI and would rather be on IVs. I've never done Colistin before but if it works and doesn't make me SOB I'll be grateful. If it doesn't work then its going to be off to the big house cause its not going away on its own. If I do end up in the hospital it will end up being around the meet at Patti's and I'll have to miss it. Bums me out royally! I'm so looking forward to seeing everyone and meeting some new people too. But I'd rather this go away than bring something to my CF friends. So we shall see.

Time to try bed again...night all!
Sent from my Verizon Wireless BlackBerry