Saturday, May 30, 2009

Hurting today.

This should teach me to drink enough water. I think I got dehydrated today and I am in PAIN, with a capital THIS FUCKING HURTS!!!!!!!!!!!!!!!!!!

Uhg. I just don't even know how to describe this to someone with out fibromyalgia. If you've ever had the flu, and you get those aches from hell that's getting there. Except those aches usually get better with some tylenol or advil. This pain doesn't. And it takes so much out of you. It took all I had in me to go to the grocery store. And I had to go today. My friends were taking me (I don't drive). I almost cried when they didn't have any of those little scooter carts. I actually hopped up on the cart and road it while my friend pushed just so I didn't have to walk the entire time.

I am supposed to work tomorrow and I just hope that a double dose of lyrica will kill this. I am so tired that a shower is totally out of the question. I have no energy what am I doing here! Screw this! I'm going to bed with my kitty!

Saturday, May 23, 2009


I've just kind of been "off" since Dan left. Ok lets be honest, depressed. Not that I think anyone wouldn't understand. But I need to deal with this in my own way. Right now its hard for me to hear about how happy other people are with their significant other. So this is really nothing more than an explanation for why I have been silent lately. I'll get back to something like myself sooner or later.

Wednesday, May 13, 2009

Rhuematologist visit

So I saw the rhuem yesterday. They managed to squeeze me in since I was feeling like crap. My hips were really hurting so he got to see me hobble around. This is probably a good thing because he was able to see how much I was hurting and how it was interfering with my life. He gave me another scrip for lyrica since it worked so amazingly well for me. I have 3 months of refills on it. He wants to see me again in about six months. The goal here is to get me feeling good enough with the meds that I can start doing some real excersise (more than just walking and yoga). I would really like to get my butt on my bike and the elipticle machine in the work out center at my apartment complex. Excersise is great for fibromyalgia and CF so we would be killing 2 birds with one stone. And then at that point I may be able to cut back on the lyrica or stop it all together. This is a wonder drug though (at least for me) and I would encourage anyone with chronic pain to give it a try. It makes me a little woozy for the first week but then it goes away and I feel amazing. I can function so much better. My work performance improves and my apartment is cleaner!

Saturday, May 9, 2009

After the appointment!

After I left my appointment (feeling much better about my health and the potential for it to get better than I have in years!) Patty drove me around Denver a bit. We went by the Denver Mint where they make money! That was kind of cool to me since I work with money and have somewhat gotten into coin collecting. We went through the downtown area a bit and by the stadiums.

Then we headed out of town to go to Black Hawk. Its a little town up in the mountains that seems to be nothing but casinos. We had to take a slight detour through Golden as there was some road construction happening. But that took us by the Coors brewery (I don't particularly care for Coors but still cool to say I saw it). Golden is a cute little town, has a very old feel to it.

I picked the Golden Mardi Gras Casino to try our luck at. We both decided to just play $20 because we're both too chicken to lose more than that. We fiddled around for a while not really getting anywhere on the machines. I won I think $8 on one. Then on a different machine on a whim I decided to go for the maximum bet. I won about $50 and ripped my ticket out of that machine so fast! Over all I came out $40 up so I left Denver with more money than I arrived with.

We had just enough time to go get dinner before I needed to head back to the air port. So Patty took me to the Trail Dust, a rib and steak place that her family likes. You can't go to Denver and not have ribs or steak!! I had a half rack of ribs that was yummy, they just fell right off the bone. I did however decline to try Rockie Mountain oysters. No thanks!

We kind of had to rush to get me to the airport. And my gate number wasn't on my boarding pass (I was able to print that in Seattle when I flew out that morning), but luckily the airport was very empty so I got through security without any hassles and was able to find my gate on the reader board. I even had time to stop and pick up some souveniers for friends. I got a very cute shot glass with a little moose inside who's fishing.

All in all I wish that I had more time to check out the town, so my next trip will be for a weekend I think. Denver seems like a cool town and the people were very nice. I look forward to my next visit!

Thursday, May 7, 2009

My trip to Denver.

YAY DENVER!!! I am NEVER doing that in one day again though. I can't sleep on planes and I was SO tired. Oh well, live and learn.

So Patty was nice enough to drive me all around yesterday, thank you SO much! She picked me up from the airport, we drove through Wendy's so I could have some lunch and then I went to my appointment. National Jewish is a really nice facility. Its not a hospital, they do their admits through the university, so while it does have a medical office feel, it doesn't feel like a hospital. No one is walking around hooked up to IVs and junk. No patients are being wheeled around on gurneys.

I got checked in, then they called me back and took my vitals. The altitude didn't seem to effect me at all. My O2 sats were 98% and my FEV1 was 54% which is normal for me. My heart rate was 116 though, more on that later. The RT came in and did my PFTs and asked if I needed any supplies (nebs and stuff) and I said that I did so she hooked me up with some new Peris. Then the nurse came in and asked me more about my medical history and current meds. They had my records from the last year from UW but they wanted it from my own mouth which I liked since UW can never seem to update my med list. I also made sure to tell her that I had done IVs last month and that I was on prednisone right now for some inflamation.

Then Dr. Nick came in to talk with me. I really liked him! He's the head honcho there. He's very soft spoken, and his hair was kind of scruffy, but he seems like a very compitent and caring CF doctor. He listened to my questions and concerns. I almost fell off my chair when he said that he would have expected someone with my lung funtion to have had between 20 and 30 rounds of IVs in their life time. I've had 3. He wanted to get a chest CT (UW only did one once when I was having severe chest pain and they thought I threw a clot) to see what damage I have. He is also concerened that my heart rate is always so high (UW isn't). He said that he would expect to see a resting heart rate of 110 bpm in a patient who was nearing transplant. He wants to get to the bottom of that.

So I went up for my CT and met with the dietician and social worker when I came back. The dietician said that she is happy with my weight (121 pounds), I take my enzymes, rarely get constipated, and my last vitamin levels were fine. She said that she is pretty hands off unless I need something from her. She said that no matter how much she reads or works with CF patients she will never know as much about it as me!!! THANK YOU! So she didn't have anything for me and I didn't have anything for her. It was pretty much the same for the social worker. She asked about my lifestyle (live alone, have a boyfriend and a cat, when I was dx). She said that when I get ready to relocate they can help me with finding a place to live and anything else I might need.

The RT came back in to see if I had spit out a glob of goo for her and I hadn't. So she did something that UW has never done if I wasn't able to get something up....sputum induction. That's right, UW has NEVER done sputum induction on me. Nat. Jewish was not letting me leave without a sample. Thank you.

Dr. Nick came back in to check out my CT with me. He went through the whole thing with me explaining what we were seeing. I have never seen one of my chest xrays let alone my CTs. He said that the only trouble spots I have are behind my breasts which they see in CF women all the time. The vest just doesn't get that spot very well through the breast tissue. So he wants me to use my percussor in certain spots around my breasts while I lay on my back to help unplug those spots and drain the goop out. He said that I don't have a ton of damage and wasn't concerned about it alone. He did say that based on the damage he would expect that my PFTs would be higher. So he feels that I have more of an asthma component than I have been lead to believe. He wants to switch me to a different bronchodialator and see what that does. He also said that it may help my heart rate to go down as well.

If the change doesn't help my heart rate he wants to get an echo-cardiogram and have me wear a heart monitor for 24 hours to figure out what's going on there. Over all Dr. Nick spent a good hour and a half or more with me. I can't tell you what a huge relief it was to be listened to and have my concerns validated. He asked if he could send a letter to UW about what he wants to try. I told him that they know I am not happy and that I was coming for the second opinion, and to PLEASE write a letter.

I was very happy with my visit and looking forward to seeing how the new med works. I have an appointment for a study visit in about a month so I will see if my PFTs change at that time.

Saturday, May 2, 2009

For these next six months....

For these next six months, while you're so far away, I'll think about you every moment. I'll go to bed alone, and sometimes I'll cry myself to sleep. I'll worry. The smallest things will remind me of you. I'll look at your pictures every day. I'll go to work and pretend that I'm ok. People will ask me to thank you for your service. I'll wait impatiently for the days when we get to talk. I'll walk on air after we do. Most days will feel empty.

Most of all for these next six months I'll love you so much it hurts, but I won't be whole until you come home.