Update fall of 2015

I haven't updated in a while, and I'm sorry about that. I have just been so tired and on the days when I have energy I am out living. My PCP doctor is back and my IVs are set up again, and I'm happy about that. My last appointment I had to wait for almost 2 hours to see her though, and I'm not happy about that. I have been discussing getting a new PCP but I really *LOVE* the one I have, and my case is complicated. So I'm really not sure what to do yet, its a lot to think about.
My IVs have been going pretty well so far. I've got a few more supplements to take, and my cholesterol has finally gone up. My vitamin levels are still not up to par, but we'll get there. I have hope.

I did go to NIH this past week for my CF clinic. My lung function dropped, I could tell without the test though. I could feel a difference every month. I'm waiting for the sputum culture results, they're going to send me some antibiotics to take. If my sputum shows no change then this drop is muscle related, and I have had increased muscle weakness here lately. I'm also going back at some point to get some tests run, to check my digestive system, my lungs, and nerves. Next week I am hopefully going to the dentist to get my teeth fixed, which will be nice to finally get it done.

As for the rest of life, it's going well. My daughter is still in college and doing very well, my husband is still amazing, and I am still extremely thankful for my life.

The Middle Aged and the Restless

About 2 months ago I was getting IV therapy, but now I'm not. My PCP is out for medical reasons and the doctor that I saw in her place had absolutely no idea what to do with me. She sent a script in for 1 treatment (with only part of my treatment) for one time. I was pretty upset but I took solace that my doctor would be back in June. I ended up not getting IVs because the pharmacist noted the script was incorrect b/c it had Vitamin K in it and I'm on warfarin. So they wanted to make it with out the Vitamin K; but the doctor did not call them back. That's not all. The doc also prescribed me a new pain meds b/c my old ones don't help much anymore (and I was already take the max. dose)... any way she prescribed it for 400mg but they only do a 500, but the doctor never called them back to correct it (after she had been notified and asked to fix it). So I called to find out if they were scheduling for my doctor and was told she would be back sometime in July.

I called again a few days ago and they say she won't be back until September. SEPTEMBER.

I'm angry. I don't want anyone to jump through hoops for me, but I do think the doctor filling in should be doing more. With out my IVs I am exhausted. My pain feels worse, although I guess I could just be that tired. I don't know anymore. We just got back from a camping weekend, which was a lot of fun. I don't think anyone notice how tired I was. Maybe they did. I don't know.


I enjoy making memories with people I love, so I usually put my pain or fatigue on the back burner to do it; so if I cancel I'm feeling really bad. I'd invite people over but my house is not clean enough and my yard is a freaking jungle. My husband is having his own issues with fatigue and will be going in this week for a sleep study. I hope he gets help one of us should have energy.

This weekend my daughter is coming to visit for Father's day, and think I'll need they wheel chair more b/c of the fatigue that the pain.

May is...

It's been a while, I've been busy and exhausted and busy again and exhausted again. (Rinse and repeat)

May is Cystic Fibrosis awareness month! I was going to post my daily routine and tell you how many pills I take. But after reading a friends post on face book, I realized that all you know about me is my struggle.(Unless we have met personally) So instead I want you to know that I love my life. I have wonderful husband who takes care of me (and works full time), I have a witty and intelligent daughter who makes my world a brighter place every day, I have great friends who I can always count on to make me smile, and my family is full of awesome people!

My life *IS* a struggle, but so is everyone else's. My struggle is not the same as yours, and the two can not be compared. Your struggle is just as valid as mine.

Cystic Fibrosis is a genetic disease that affects the lungs and digestive systems of approximately 30,000 children and adults in the US. We all take many pills every day and do treatments resulting in hours of our day spent on "maintenance". We need a cure because this disease still cuts lives short. CFF.org is a great foundation working to find a cure. They have helped to fund a drug that is out now called Kalydeco, which is doing wonders for a small group of us with a specific mutation. They are currently funding the research and development of a medicine that will help a larger group as well. BUT neither of these things are a cure. So we can still really use donations.

I am more than CF.

I am a mother. I am a wife. I am a daughter. I am a sister. I am a friend. I am a Godmother. I am a good person. I am strong. I am funny. I am a bird watcher, a dog lover, a "ghost hunter", and a gamer.

There are so money facets of me and cystic fibrosis is just one of them.

Empty Nest?

I haven't updated this blog in a while, but I wanted to come on to update on the current going on. I got a cell phone and with a few apps I have been able to keep track of my "episodes" and I have realized that when my joints hurt my temperature goes up. How weird is that? I plan on discussing it with my doctor at my next appointment.

My daughter left for college in October 2014, and I haven't seen her since December (when I was sick). This may not seem like a long time - but it feels like years have passed. She left in October (the 3rd was the drop off day) and she came home in November for Thanksgiving, she was gone 7 weeks but we went to visit her twice during that time. Then she cam home for Christmas, that time she was gone for 3 weeks. As of today it has been just over 9 weeks, and we haven't had the chance to visit. This weekend we hope to visit, and I can not wait. I miss her so much!! I enjoy spending time with my husband but it feels like a piece of us is missing, and I know he feels the same way. The 3 of us have always been so very close, and I just feel like the whole world is changing. People used to talk about their kids leaving, and they would say how hard it was, and I guess I just always thought it would be different for us. I'm not really sure why though. For 18 years the 3 of us were best friends, and we still are we just don't live together anymore. It's a tough transition for Frank and I.

I have dealt with many different medical issues personally and as a care giver, but this is not something I feel like I can navigate. I am so happy she is out doing her own thing, and I am so very proud of her. I just don't know how I'm going to get through this.

Out with the sick...

We have a few friends coming over tonight, nothing big as I am still not feeling 100%. 2014 started off rough and is ending rough, and I am hoping this new year is different!!

January started off good, my best friend was expecting her first child and February 7th Caroline Rose was born. Also in Feb my friends Scott and Mary announced that they were having a baby and my daughter was accepted into the Art Institute of Pittsburgh! The cold brought a rough time with pain, but I got through it. April 14th I turned 37 years old, and in May my daughter attended her Senior prom. I got to spend Mothers Day with my daughter and my best friend and her daughter, we went to the Mothers day service at church. That afternoon my husband and daughter took me to the zoo! Also in June my daughter and her best friend graduated from High School and I got to spend most mornings on my porch watching the birds. My daughter turned 18 and my husband and I celebrated being married for 16 years! We got to spend another vacation in Duck, NC; we ended up going with some good friends and having a wonderful time. Mary and Scott had the baby, Seth Gary, and then in October my baby moved away. In November we lost our dog Snoop, she was a great dog and I greatly missed. Also in November I got sick and was sick through Thanksgiving. I started to get well, only to get sick with in a few days.

2015 is another year to make some GREAT memories. I hope to spend more time with my family and friends.


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Ready or not its Christmas time!

Ever since my Grandmother died I have had a difficult time getting into the Christmas spirit. I really try but it is always hard. I’m not sure if it is because she is not here or if it is because when she was gone my whole world changed, my focus shifted. I wanted to be like her, to be the one who helped everyone who needed it. Because I’m disabled – I live on a budget, I don’t have the strength or energy to see my family and friends as often, and I have learned the hard way that I cannot help everyone.

This year Christmas seems to be approaching so quickly that I don’t feel I’m ready! Not to mention my budget sure isn’t ready either. I’m Catholic, so Christmas has a deep meaning for me and my family that goes beyond presents. It is difficult though when you really want to give to others. Luckily my daughter will be home for a while so my husband and I have a month. Haha

I have been sick; I’m still working on getting better. My voice comes back, but not for long. I finally have energy to get Christmas cards out. Maybe.

Over the weekend, the cemetery had a candle vigil for the holidays and my husband and I went. It was beautiful and we loved it. I took a lighter and relit a few candles that had blown out, we were both cold but it was totally worth it!

Time

I have been sick now for 22 days. Curious about what took me down? Not the flu, but a cold. The flu would have been disastrous. This was still rough, it still is. My husband was afraid to leave me to go to work, and when he did go he made sure someone was taking care of me. I spent a few days in the hospital, but left because they were doing nothing. They didn’t change any of my meds, they didn’t start any new meds, I had to ASK for CPT (!!!), the doctor didn’t even introduce himself, and they didn’t even figure out what is wrong!

Well, to be fair they gave me IV fluids and oxygen.

I saw my primary; she said it was probably a little cold that my body just couldn’t fight off. A little cold, she said! Something that took others 2 or 3 days to get over has been the bane of my existence for the last 22 days. Sometimes I forget I’m sick, forget that my life is not what it was. I am not feeling sorry for myself or looking for pity, I love my life. I love where I am and who I am surrounded by; my health is just a small facet of my life. So when I complain about it, it isn’t because I’m miserable but rather because some days it pulls my focus. I can’t think of anything else. I worry about things that I’m sure a lot of people my age don’t think about.

Because I consider life and death on almost a daily basis, I realize how much I love the people in my life. The ones who take care of me, the ones who offer to help, even those who put their heads in the sand. My life is not for the faint at heart, it’s not for the weak, and the people who have stuck around have shown me strength and love.
I appreciate them, I appreciate every second I have with them.

Time is precious.

Our time is finite.

Make your time matter.

Even if it is just helping your neighbor, or being a role model for the kid next door.

Do something guys.

Don’t wait. Do it now.