Another Weekend-Wrap Up

Once again, I haven't had much time for blogging. Therefore, I'm doing a wrap-up post, updating from the last week or so.

This week was my spring break. I had 2 goals: catch-up/get ahead on my school work, and do some scrapbooking. Unfortunately, #2 goal didn't happen. The first goal was partly accomplished. This week flew by so quickly, and I wish I was so much more ahead in my school work/studying.

I did several CFF volunteer stuff this past week as well. Wednesday, Thursday, and Friday involved meetings regarding CF Great Strides. Friday also included speaking at our Children's Hospital Child Life Services Retreat. Myself and our local CFF director presented at this retreat. Then afterwards, we met and discussed more on Great Strides. I also attended a bridal tea on Saturday, and babysat multiple times since last weekend. So all-in-all, it has been a busy last few weeks.

Time is definitely flying by, and the end of the semester is drawing near....which means one thing: I better get on a roll and study my heart out so I can do really well on the last few remaining exams. YIKES!

A Health Update: things have been going pretty well. This weekend hasn't been the best however. I'm really hoping I'm not getting sick. I'm only 2 weeks out from my TOBI, so my only option would be to start the inhaled Colistin. I'm going to give it a few more days and see how I feel. My back pain has been going back and forth. I also started exercising...YAY! I'm really trying my best to keep it up. I've also been making myself drink water, as I don't really put forth much effort to accomplish that on a daily basis. I know my body needs lots and lots of it, so I'm trying extra hard to drink 1 bottle per day (I use to drink 1 bottle per 2 weeks). I did get in some good sleep this week, which as helped my energy level some.

In other news...my curtains (valences) are finally up in my room!!! Also, the manufacturing company that makes the decorative stool I bought at Home Goods is willing to ship me one from their warehouse in California. She is charging me the same retail price plus shipping. I was surprised she offered that to me, since they are a wholesale company. She checked all the local stores and no one carried the product nor had ordered on the next shipping cycle. So I think I'm going to accept her offer! I will post a picture soon that shows the valences and everything together (my bed isn't made currently...lol).

This coming week includes a project due for my Nutrition Class, classes, another CF speech, another CFF meeting for Great Strides, an Auburn Singers Concert for my cousin, and 2 PT appointments for my back.

A few more things....today is Brandi's birthday....so head on over to her blog and give her some birthday love!

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Digitize your CF routine!

This Treatment Tracker tool from CFvoice.com can help you organize and track your treatment information right on your computer! You can track and organize medications, airway clearance methods, nutrition information, and much more. It was designed especially for CF patients only. I received an email about this and I thought I would check it out. Although I really don't need it for myself, I thought it might be beneficial to some of you other CFers out there, and maybe even parents or caregivers. I highly recommend checking out. It's probably more for those CFers who don't adhere to routines very well or have a hard time keeping track of when to do what, when to take what, etc., as well as for parents of CF kids. Maybe for those parents who are having a difficult time getting their child to adhere to doing their vest or taking certain medications, there is an option where you can check off each time you complete an activity. Click here to check this tool out and to view a demo. You do have to register on the website, but it's free. Novartis Pharmaceuticals sponsors CFvoice.com. and is highly involved in the CF community.

Track treatments by type
From diet to medications, enzymes to exercise, you can enter all types of treatments.

See each treatment's details
View your treatment details like type, amount, time of day, frequency, and more.

Monitor your adherence
Track your progress. Green checkmarks show the treatments you've completed. Missed treatments are highlighted to help identify possible areas for improvement in your schedule.

Print for your reference
Save your treatment schedule as a PDF to print for your next doctor's appointment or visit to your CF center.

Fireworks

I thought I would share a few pictures of the fireworks from Saturday night. The place where we were viewing them ended up having a few trees in the way...so it wasn't the best view. However, it was still great! And my pictures turned out pretty good.

Friday night my parents and I went to my cousins house for dinner and to play games! I had a great time at Brandi's party Saturday night and at the pool during the day! I hadn't been to a "party" in a long time...so it was good to go! I guess I wore myself out, because I slept the majority of the day yesterday!

I am babysitting all day tomorrow and Thursday! I haven't had much energy lately, so I'm not sure what's going on there. I don't know if it is related to my back pain or what? My wheezing is CRAZY too as well as being short of breath. Again, I'm not sure if the sob is related to my back pain or not? I might be calling my transplant coordinator this week to seek out her opinion and maybe go ahead and take the Cipro prescription my doctor gave me at clinic. I want to be feeling tip-top shape for my upcoming trips. I'm really out of shape....but can't do a whole lot of exercise due to back pain and pulled knee muscle.

We have a plumber coming to our lake house tomorrow...I'm praying that he can fix whatever the problem is, so we can get back to the lake this weekend!

Oh...and as soon as I have more info on the cat or when we get her, I will post that info!!

Thursday/School Update/Misc

I haven't really had much to blog about this week! But I thought I would give a brief run-down of a few things. Today I have my pre-nursing advising appointment at 2:30pm. I'm really excited. I made a tentative schedule yesterday of my classes and times. I found out that "inorganic chemistry" is the same thing as "Intro to Chemistry I", which I have already had. So...YAY (or I think YAY). I shouldn't have to take that! So that eliminates one of the sciences I thought I had to take! It is very hard to schedule more than 1 science at a time and it not overlap another science. But as long as there are still openings when I register August 1st, I think it will work out. My plan is to take Organic Chemistry (aka Intro to Chemistry II) and Human Anatomy this fall! Then in the spring I will take Microbiology, Human Physiology and possibly either Nutrition or Developmental Psychology. Then next summer I will take the final class: either Nutrition or Developmental Psychology or both...just depending on the schedules for the spring and when they are offered.

I heard back from my aunt today about me being hired again for the fall! (for those of you that don't know, my aunt is the office manager at Sweet Pea Designs, and I have worked as a "temp" the last two years [July/August-December] during their "Christmas season.") I have been counting on returning this year, but wasn't sure due to the economy, etc. But she assured me they are hiring and that I am already hired if I want to. I probably won't start until September though due to business being really SLOW! That's ok with me though! So I mapped out my 2 science classes where I can still work part-time (or about 30 hours). It will be busy, but good busy! So I'm hoping and praying that the classes/times that I need will still be open when it's time to register! I will update on that later on!

I got some good news yesterday!! The credit union that I send my car payments to is offering all of their customers the chance to skip one payment this summer (either June, July, or August). I know this sounds silly to be excited over...but right now with me not working, I have no income and are hurting for money! So I get to skip my August payment!! YAY! That leaves me a little extra money for my two trips coming up!

I went walking with my Mom after dinner last night! (not far...just down our street and back). It hurt my back pretty bad, but was tolerable. I wore my knee brace, and it seemed to do pretty good, as well as the broken foot. But it felt good to do it! I worked up a sweat and some shortness of breath (which is good). I really need to get some aerobic/cardio exercise in! I plan on walking again tonight. I've got to get in better shape for my upcoming trips or I'm going to be in deep trouble...physically :) In addition, my tummy has decide to "bloat up", get "big"... whatever you want to call it. It's HUGE and hard and stretching! And I think it's adding extra pain to my back and rib cage. I'm not sure what's causing it as my eating is about the same. I haven't had this issue in about at least 6 months. Right now my guess is it is from the Prednisone. I'm keeping a watch on it and hope it will level off. That's why I want to walk too...too hopefully help that. If it doesn't get better in a few days, then I will be making a call!

I am also meeting with our CFF director today to finalize our CF Bowl for Breath event coming up in August. I'm helping coordinate it with her...very excited! We had a wrap-up dinner/ celebration Tuesday night for one of our local CF walks. We had an ok turnout.

Our plumbing at the lake is not going to be fixed in time for this weekend.... bummer! But we do have a guy coming next Tuesday and are praying he can fix it. If so, then I am so at the lake every weekend possible!!! Brandi is having a 4th of July party Saturday night and we are going to hang out at the pool at her condo earlier in the day...so hopefully it will be a great day! She has a great view of our downtown fireworks from her condo!

Ok...so that was a long post...I hope I didn't bore you too bad :) I hope everyone is having a great Thursday!

Internship and Update

Well, I started my internship today..finally!! It went really well (I think). The instructor was running late, so another sweet lady gave me a tour of the department and then some busy work until the director arrived. Once she arrived, it was basically a day full of meetings. I basically just shadowed her all day, which was fine with me! She was very sweet, and I think I'm going to learn a lot. My intention was to work 5 days a week for 6 weeks. Well, after talking with her, I don't think she wants me there that much...bummer. She doesn't want me to come back til next Wednesday. I will shadow her once again next Wednesday, Thursday, and Friday. I'm supposed to email her what I want my schedule to be. I'm going to suggest no less than 3 days a week (it will take me 2.5 months to complete 240 hrs if I do 3 days a week). I REALLY REALLY want all of April and May free to concentrate on graduating, and my licensing exam and finals! So we'll see!

The upside to this, is, I really need some rest this week. After Monday's events, I feel exhausted (still), and my body could use a few more low-key days. I'm gonna make sure I study really hard for my other 2 classes in the meantime!

For those of you that are new to my blog and don't know what my major is or what it involves, I have a post that is scheduled for later this week that will inform you of that! But for starters, my major is HIM (Health Information Management) and basically involves everything to do with Medical Records. I am doing my internship at our local Children's Hospital (which is recognized world wide and my former pediatric CF center). They are in the process of implementing an electronic medical record...which if your hospital hasn't yet, it will be in the VERY NEAR FUTURE!! (and on a side note: I saw one of my former CF docs today...so very nice. I knew I would see people I knew, since I basically spent 19 yrs of my life at this hospital. I plan on visiting people while I'm here too).

So...update from Monday: I talked with the GI nurse yesterday afternoon. I really didn't get much info. All she did was call in the 3 medications for the H-Pylori bacteria. So we are hoping and praying that this will take care of whatever is going on. I'm on a bacterial abx, an intestinal abx, and Pepto-Bismol (already taking Nexium). The ER doctor also started me on Potassium and Priolsec. So I just went from taking 8 pills a day to 16 pills a day (and that doesn't include vitamins/minerals like: ADEK, calcium, mag, and iron AND my PRN meds (like sleep meds, and pain meds). It's sad that my stomach is bothering me....and taking all these medications doesn't quite please it :) Oh well. I am also taking some Zofran twice a day to help prevent the nausea! So far so good...not too much nausea today! But I'm still tired and weak feeling.

I did not call my coordinator like I was supposed to....remember me saying I needed time and distance...well, if transplant is not going to deal with GI issues, then I'm not sure if I'm going to call them with every little thing??? Haven't decided yet.

Despite the frustration of all that's gone on the last few weeks....I know God is in control. He's trying to show us or teach us something here...just not sure what quite yet. Monday it felt like Satan was interfering with everything. Last week I finally motivated myself to exercise...i did my exercise bike 3 days (last day being Sunday). Unfortunately, I can't just jump back on it, because my body doesn't work that way. But I've gotta have faith and trust GOD to do his work!

I've read all of your blog updates (most of them)...but are headed to rest for the remainder of the evening!

Wait...one question: Do any of you know (I need facts or experience here...not just thoughts) if Prilosec and Nexium are the same (or basically have the same job)? My Mom was going to call the pharmacist today, but didn't get around to it. And frankly, neither the GI clinic or transplant team are working with me here.

Susan G. Komen Breast Cancer Walk

Yesterday, I participated in our local Susan G. Komen Breast Cancer Walk. I had been asked to participate in it by one of our HTICU nurses (our transplant floor at the hospital) several weeks ago, before getting sick. However, I decided to go ahead and do it...that it probably wouldn't hurt! I walked with 2 of our HTICU nurses. And one of the nurses brought her boyfriend and her sister and her boyfriend. I am good friends with this particular nurse, and we had a great time. There were over 13,000 people at the walk--WOW!!

It was a 5K walk, and I finished the entire thing in a pretty good time (I think). The times won't be posted probably for another day or two. We had a number that you pinned to your shirt and a time chip attached around your ankle. I had never done a walk like this, and I absolutely loved it. While I wanted to run, I didn't, and instead walked at a really fast pace. I walked along with one of our nurses, who was an older lady, and also a breast cancer survivor. She had been my nurse several days in my recent hospitalization. I was very thankful to have her walk with me. We had a good time learning more about each other. Also, toward the end of the walk, I became pretty nauseated and a little dizzy...so it was good to be surrounded by nurses. My lungs did GREAT. My legs started tiring and hurting towards the end...but I kept on. They are definitely sore today.

After the walk I went back to the other nurses house, where we ate lunch and hung out for a little while. Then I came back home and picked up a friend of mine who was in town from Texas attending a friend's wedding. She spent the night with me last night. We had lot of fun. I took her to the airport this morning, then went straight to church and Sunday school. I am very tired and exhausted, as I still haven't slept much over the last week. I also have a midterm tomorrow, so I plan on napping and studying today!

Since transplant, since gaining a lot of my strength back, and since now I can BREATHE...I really enjoy walking/jogging/running. Usually, during the fall month, I get into the habit/routine of walking/jogging 3-4 times a week. However, I usually end up getting sick, and quickly fall off the path. It's very hard to make time with work, school, and especially when you don't feel well. Well, here it is again, Fall. Yesterday was the start of my walking/running streak. We'll see how long it lasts. I plan on trying to keep it up as much as possible, and really train my body!

My GOAL: To participate in the Mercedes 1/2 marathon in February of 2009. I would absolutely LOVE LOVE to do this.

I hope everyone has/had a wonderful Sunday.

Oh...we took lots of pictures yesterday, and the website will also be posting some. So I will make sure and post those when I have them!!