Another 1.5 miler and the faces of Prednisone

Day 2 of the new running plan is officially in the books. Well recorded in the blog anyway. It went well, and I'm beyond grateful to say that I could have run further and it wouldn't have phased me. I limited myself to a 3 minute warm up walk, followed by a 1.5 mile run with the treadmill set at 4.4 mph. All in all a walk of 3 mintues+ a run of 21 minutes= a very happy and accomplished feeling me :)

On a side note, the Prednisone has me all over the place no matter how hard I try to hide it. I broke down at work yesterday morning, luckily with my closest co-worker so no huge deal, but still. Sometimes on the big "P" I'm just fine, no issues at all, well of course there is always the ravenous bottomless pit hunger. Honestly, I'm ok with that because this girl loves to eat!

It's just hard when you already have so many emotions and things going on in your mind. I have a lot of "firsts" coming up this week and next, so I'm slightly anxious. Add Prednisone to the mix and you have yourself a not-so-great combination of your eyes leaking like a faucet.

I just got back from changing my Mom's dressings on her legs and as I went to leave I just broke down. Seeing her in a hospital bed at home (granted we are making huge progress) hurts my heart a little bit. Mr. Prednisone is only enhancing these emotions.

Well, that's it for today...

"Tobi" and I may be on the verge of a break-up

I've been a mega blog slacker *slaps own hand* I guess with it being summer time I want to be outside and at our beach. Anyway.....

The lastest health wise is that I think Tobi is starting to give me issues after all these years. I'm hoping that it's not the case, but I'm not sure. Granted we've had HORRIBLE air quality in Baltimore this week. It's never really been an issue with me before that I've noticed, except lately. The other day my SUV's temperature gauge read 109 degrees. Gah! So I know that no matter what, that's an issue.

I started using a Tobi mask recently and am wondering if it's causing too much irritation in there. I mean before I started Tobi I felt fine, great even. I've been running, swimming, biking, etc. So I'm back to the regular Tobi set ups, and am just keeping a close eye on things.

I called Hopkins and am starting a Prednisone course today. What fun. We're going camping this weekend, and I refuse to let this get in my way. My health always comes first, but mental health has to be taken into consideration too and I really want a weekend away to relax.

Hello Prednisone

I can't say I've missed Prednisone by any means, but I'm happy it's available and works wonders for me. We ripped out and re-installed a new front door last Saturday. I wore a mask, which I'm sure helped, but didn't protect me 100% from all the dust, sheet rock, etc that was kicked around. While I've worked out my usual 4 days a week, I've noticed that I'm more wheezy than normal. My FEV1 has stayed pretty high through all of this, just notice a couple lower meter readings here and there.

So today I decided to call Hopkins and give them a heads up. I've been doing my Albuterol nebs as needed every 6 hours, which is helping. However the final verdict is....Prednisone taper starting today. Yippee ;) We want to nip this thing now before it has a chance. That is fine with me, I'm all about being proactive. I go for my clinic visit next week, having been working out so much, have had great FEV1 #'s, so I'll do whatever it takes to maintain it.

So while things aren't terrible, I just want to be safe. The wheeze isn't worse, but it had gone away the other day for a while and then came back a bit. When I called my nurse today to tell her, she immediately said " yeah you have those asthmatic lungs"...yup sure do. Here we go prednisone, please do the trick!

Hypertonic Saline Is Not My Friend apparently....

I'm feeling fine, running about a mile a day, and still am having chest tightness. To be honest, It's really getting on my nerves now. I've never had to be on Prednisone so many times in one year in my entire life. I think this is episode # 3 or 4. I stopped running outside, for fear that with the Fall weather I was breathing in molds, etc. Doesn't seem to be the case however. I've racked my brain today and I think I may have found it! The ONLY thing I've done different this year is start the Hypertonic Saline. Rewind...I was on it a few years ago but couldn't tolerate for forgotten reasons and now I think I remember why. The HTS really can exacerbate Asthmatic symptoms. Well Hello McFly, that's me! This has to be the reason I stopped it a few years back.

I started back on the HTS when I found out I was pregnant in April of this year. We had to do a ton of medicine rearranging because of the pregnancy. One of them was to stop TOBI and start HTS twice a day. I was on it for about a month, then boom, the chest tightness and Asthma flare up hits me. Granted I do whatever I have to do, no matter what. However I think I may have figured out what the problem is. After the miscarriage in May I stayed on the HTS only to have an Asthma exacerbation in June. We stopped it for a month or so, went back on for a month, then you guessed it, attack of the Asthma. Why haven't we ever put these pieces together before?

So now we're doing another tapering dose of Prednisone, and no more HTS. Also adding in Albuterol nebs to the mix to clear out this inflammation!

*Fingers crossed that I've finally figured out this mystery!*

On Second Thought

Hooray for Friday!!! It was one of those weeks I must say. Good in the fact that I was in charge and the work week went very smoothly. Rough in the fact that I'm still fighting whatever is going on in my lungs...Asthma flare up? Inflammation? CF stuff? Infection despite not having infection type symptoms? Nobody knows! So today at work I decided to use my very own lovely medical brain and do something different. Granted I know that there is a risk when not consulting your doctor first etc. HOWEVER I chose to follow my gut and I'm glad I did. I take Albuterol PRN and haven't really had to use it too much over the years. I've been using it before workouts now though ever since getting back to a full workout schedule. Well at work we have Albuterol neb treatments so I decided to do one today. I took my vitals beforehand and they were perfect. MY pulse Ox was 100% yippee :) Let me rewind a bit. I called Hopkins again today to touch base on my symptoms. I told my nurse that at work today I was around 2 SEVERLY sick sick people. I mean they were really sick and they were DOCTORS! Grrr, I wish they would have just not worked but that's not how that works unfortunately. So needless to say I washed my hands a million and a half times (like I do everyday) and held my breath anytime one of them walked by me. I told my CF nurse that I was worried since I'm on Prednisone I'm already immunosupressed and afraid If by some chance I developed what they had over the weekend. She didn't want to do anything differently. I didn't want to start an antibiotic, but I wouldn't have minded having something on hand just in case. At any rate she said to just keep doing what I'm doing which is Prednisone, Pulmozyme, TOBI (on month), sinus rinses as needed, Zyrtec D, Singulair, etc. Oh and to wait to call her on Monday If I've developed an infection over the weekend. That didn't sit too well with me. I'm telling her on the phone that I don't feel so great, my chest is still very tight despite this regimine but no changes. I'm very patient, sometimes too patient I'll admit. But today I decided to make a step myself and did an Albuterol treatment at work and WOW it worked WONDERS on me!!!!!!!!! I came home and did my home PFT meter and the reading was the absolute highest I've ever gotten since I owned the thing!!!! I felt amazing and so relieved!!!!!!!!!!

I'm not saying that you shouldn't listen to what you're told by any means. It just felt great to be able to assess my symptoms and act accordingly and see amazing results. I haven't been able to breathe this deep all week! The bonus for me is to be able to laugh and not cough! I'll definitely be reporting this to the docs at my appointment on Tuesday for sure. I can't believe the difference. Is this something I should do routinely? I've always had a history of Asthma on top of CF, but I feel like it often goes secondary to CF. So we'll see what they say.

As for the rest of the day...I did a good workout after the Albuterol neb. I did a 30 minute cardio workout on the mountain bike. I did a total of about 4.5 miles around the neighborhood which includes many hills! Went and got Father's Day gifts, Birthday gifts, groceries, etc. When I got home I had a phone call from one of our friends whom Scott is helping do some remodeling work on their house. They said to come over and join them all for food and drinks. So my night of relaxing turned into a night of friends and fun. Happy I must say eventhough I was needing the rest. It was a very relaxing night of chatting with friends and just enjoying company.

Here's to the start of a good weekend with happier breathing!! ;) *Fingers Crossed!*

Long Day

I knew all week long that today was going to be insanely busy at work. And since I'm in charge I have to stay until the last patient is fully stable and discharged. So it was a doozy to be honest. Getting to work at 0545 is rough, but I don't mind since I'm normally out early. Today was non stop patients, 1 sick RN who had to leave early, another RN who had an appointment to go to, means no lunch and a non-stop 12 hour day for me. Ahhh! I was so hungry and beat! After work I had to run to Target to pick up a co-workers birthday present for tomorrow. I then decided as I was driving with the toothpicks propping my eyes open (LOL!) that I was all about carry out for dinner. So I did just that. Got a huge order of Buffalo wings and mozzarella sticks. Mmmm!

I'm officially having a lazy no work out evening. My body isn't a big fan of me right now anyway. I thought I was feeling better, but currently my chest is so tight and I'm wheezing like crazy. How is this possible with the Prednisone!? Grrr it worries me too. I don't like this.

*Positive Thoughts*

Slowly but surely

Getting better that is. I was very happy to have gotten sleep last night!! Woo hoo, take that stupid Prednisone, ha ha. I woke up around 2 am and thought, oh no here we go again, but surprisingly enough I fell right back to sleep, whew! I don't know what's going on because recently when I'm driving home from work, I am so EXHAUSTED that I feel as If I can barely keep my eyes open. As I mentioned before I'm not one to be a big "napper" but recenlty it's happening a lot. Today after work all I wanted to do was just sleep! So that's exactly what I did too :) Luckily Scott called me around 4pm to wake me up or who knows how long I could have slept for.

After the nap I was still very exhausted but did the Eliptical again. I thought I worked hard yesterday!? Wow I really kicked butt tonight! My pulse rate usually hangs around the mid 140's or so, tonight she was rocking it at 160 yowza ;) Yesterday's mileage on the Eliptical was 1.22 miles in 30 minutes, and tonights was .91 in 20 minutes. Sure did feel good afterwards too. I'm glad that I didn't let the exhaustion get me.

I'm also very happy to say that my voice is back a lot more today. It's officially been one week since I lost it...feels way longer to me though.

I'm keeping my close friends daughter in my prayers tonight. She's been having seizures of unknown cause and is currently in the hospital being evaluated. She's almost 2, so my heart just breaks. Hoping everything is ok!