On Hold

Happy Easter! He IS Risen! We had such a fun Easter this year celebrating with family. We went to a wonderful service at my parents church and the message was really powerful! Cousins were up from PA and so we all had Easter dinner together at my other cousins house and she had a fun egg hunt for the kids. We have moved in with the ole rents while Jim and I are looking for a place to buy or rent in the area. It has been great so far, I think the best it could be, given the circumstances; however, we are both feeling the lack of space and privacy:)
One stress that I'm hoping goes away by next week is the fact that we have still not closed on the house. Our buyer has needed to extend the closing date twice now because of amended tax returns from last year that we are waiting to be electronically transmitted to her mortgage company. It is frustrating as everything else is kind of on hold until we sign those papers. I'm praying that it will all happen within the next week.
Health stuff has been frustrating lately but I'm really trying not to focus on that too much, but it's hard not to. I still exercise 6 days per week but it seems to be getting harder, although at my clinic appointment on March 6th my breathing tests showed consistency since the last visit. I just have to keep plugging away at taking the best possible care of myself.
I've been praying for God to show me where he wants to use me. I was working part time and doing a number of volunteer positions before we moved and I just haven't figured out where I fit yet here. I know it will just take time and I really want to find the right thing so I am just being patient doing some researching and praying about it.

It's been a while and we are moving!

So I haven't blogged in a llooooooooooong time! A lot has been going on in the Grumbine house in the last few months:)
We are moving! Closer to Jim's job and my family. We accepted an offer on our house and will close on March 20th. I feel torn about this because we love it here for so many reasons:
1. The area is beautiful. 5 minute drive to the ocean is priceless! I bring the dog to the beach at least a couple times a week to see the seals sun bathing.
2. Our church family is great. I have never felt as at home as I do in our church. The people are amazing. True God followers. The last 2 years has been a time of real growth for both Jim and I.
3. The town we live in and the house we live in are so cool. The downtown has so many neat shops and restaurants. We won't be able to find a house like this again. I have never lived in a home of this quality. We really lucked out finding this.
4. It is convenient to everything! Maine (my cf clinic, kittery outlets, the beach), New Hampshire, Boston.....everything is very easily accessible.
As we've been praying about it though, moving closer to my family and where Jim's current job is, seems like the right decision. I'm thankful for the blessing of staying with my parents until we figure out where we want to buy/rent.
Another big thing that happened last month:
I was asked to come and speak at the FDA advisory board meeting in DC for the drug inhaled mannitol. I gave my testimonial as to how this drug is benefiting me because I have been taking it through the compassionate use program for over a year now. I didn't realize that, although there were over a hundred patients in the phase 3 clinical trial for this drug, I am the only cf patient currently on this drug in the US through compassionate use. It was a pretty amazing trip! Jim and I got to meet some wonderful doctors as well as the head of clinical affairs at the cf foundation. It was so cool to see how the process of approving a drug in this country works. In the end, the advisory board unfortunately voted down the drug because of some safety concerns they had with patients in ages 6-17 but hopefully this is not the end of inhaled mannitol. I believe the drug company will appeal this decision. It is helping me greatly as well as many other cf patients in different countries.
On the social front:
I had my very good friend Ashley come and visit from California recently. It's always a blast when she comes to visit because she is so much fun but it also gets the girls together too:) We had such a fun girls night in NH at my friend Erin's house, eating, laughing and chatting it up all night. We had a sleep over and each of them are so awesome about helping me out with my medicine. They each took a stab at doing my manual chest therapy. (They loved having the opportunity to hit me.)
Last night, a group of us girls from church, took my friend, Danielle, out for her birthday. That was fun times as well. We asked our server to come and sing to her after dinner and they did a fabulous job at embarrassing her!
We were supposedly getting a big storm tonight and continuing into tomorrow but I think the initial reports were way exaggerated. I think we are only getting a couple of inches of snow now. Hopefully the weather isn't so bad that church is canceled. We have a missionary speaking tomorrow and this is also one of the last Sundays to sing with the praise team before we move:(

Health

I finally feel like I'm strong physically again. I had a rough last few months. In mid-February, I was put on a new medication called Bronchitol, which is not even FDA approved here in the states yet. For a month, I really felt like I was invincible. Exercising became easier, I was tired less and I just felt this overall boost of energy. I think I started to really believe that I could go nonstop and began to fill up my days with activities and commitments and I think in the process I just ran myself ragged. To make a long story short, I caught a bacteria that I have had before called pseudomonas. My doctor then put me on an antibiotic called Tobi to fight this and I started seeing an immediate decline in my health, so much so that when I went to my cf clinic on April 26th, my pulmonary function tests showed that my lungs were functioning at 37% of a normal person of my age, height and weight. This was a big shock to me. The realities of having cystic fibrosis started setting in and I was not in a good place.
My doctor agreed to have me try a couple of oral antibiotics first as putting me on IV antibiotics hasn't seemed to boost my PFT's in the past. He believed I may have been having a reaction to the tobi and so I immediately stopped that.  My breathing tests were a little bit better 2 weeks later and I have slowly been feeling stronger each day since then.
Fast forward to today. I will be starting Kalydeco tomorrow! I am thrilled about this. It has been a long process but I am so thankful that God has led me to a doctor who really cares about me as a person and not just a patient. Kalydeco is a new drug that was just approved by the FDA to treat a rare form of cystic fibrosis. Although it was approved for only 4% of cases, it may help a larger percentage of patients. Patients who have been able to take this new drug are seeing dramatic improvements in health. I am so thankful that my doctor is willing to allow me to try this drug. I will be going on this for a 30 day trial period and if it is working, I will continue to take it. It works at the genetic level and not just treating the symptoms and it is just a pill! I am very excited for tomorrow:)

Life is Good

When we first moved into our new home about a year ago, I was depressed. For a few reasons, but mainly, I felt lost and I missed the life and the friends that we had made in our last home. I don't like change and this was definitely a change. Well I am glad to say that over the last few months, God has really brought me out of that darkness and He has helped me to appreciate all that is in my life now. Some of the things have always been there but there are some great new things as well.
For both Jim and I, this is the first time that we are really involved in the lives of the people at our church. It is an awesome thing to really enjoy being in fellowship with other believers and to know that we are bonding with brothers and sisters in Christ. We didn't really feel this connection at our old church. I still love being a part of the praiseteam and Jim is learning the sound system. It's fun to be able to go to practice together and serve in this way:)
I've also realized how much I love the people in my life:) I am so thankful for every minute I get to spend with my husband, my family and friends.
I have been enjoying the time I spend volunteering at the local pregnancy crisis center. It is an awesome organization and I feel so honored to be a part of it. I am training at the moment to be a peer counselor.
I have also been blessed by my boss as well recently. She is 91 and she is so supportive and loving and such a wonderful Christian woman.
One thing I have come to realize as well over the last few months is that I love kids. I do, and I want one of my own:) I absolutely love watching my little cousins on Fridays! It is a lot of work but they are so wonderful and every time I think about our time together, I smile. It is also such an honor that I get to spend this time with them.
I have been fortunate to make some great new friends here and I'm not too far away that my mother won't make the trip up to spend the afternoon at the beach a couple times a month. We just had such a beautiful day at the beach on Thursday....67 degrees!
And to top it all off, I've got a great husband and I feel healthy!
I'm just overwhelmed with thankfulness right now! I never want to take these moments of thankfulness for granted:) Life is good and I am so thankful to God; the giver of life!

I'm on Bronchitol:)

So it's been a couple of weeks since my last post and a lot has happened. Good things:) I heard from my nurse about 10 days ago that we may be hearing from the FDA about the approval of a drug that I have been waiting for as my case had been expedited by someone from the research institute. It seems like it has been forever but it's only been 8 long months since my clinic applied for the compassionate use of a drug that is not yet FDA approved to treat my cystic fibrosis. I was in a clinical trial a while ago and had the opportunity to be on this medicine for 6 months and it did great things for me and my doctor felt that we should try to get me back on it at this point. Well, my lungs haven't been doing that well since August and I have become very impatient but God's timing is perfect and when I got the actual call that it had been approved, I just began sobbing! It felt too good to be true. I am so thankful to my God and I am thankful for my cf team and the research institute for working so hard to get to this point and for all of the people who have been praying about this. I've now been on the drug for about 3 days and I feel pretty good and I'm praying that it only gets better from here:)

Feeling better

Well, the good news is: already yesterday, I was feeling better and was able to go to church, get some exercise and went to the beach with Jim and the dog:) The sun was beautiful! I am still very congested but I don't feel nearly as sick as Friday. Jim caught my cold though, so that stinks. He's already feeling better though.

I started off having a great day today. Good night sleep, Jim was working from home and I love having him around the house:) We enjoyed our coffee together, did my treatments and then I went off to the gym and had a great run and enjoyed a good hour of althletic yoga....and we had a beautiful walk by the river with the dog...so great day....well just about 15 minutes ago, I got off the phone with the research dept of the clinic that I was trying to get in a clinical trial at and they just told me that they are not accepting patients from other clinics for this trial any longer because they have been able to reach the number they need with the patients currently going to their clinic....ugh. So I am very disappointed as I really felt like God had lead me to find this opportunity, and I met the qualifications..... She did, however, give me the number to another research dept at a different clinic down the street that is conducting a similar trial and I may qualify for that one. So I'm going to remain hopeful. Back to square one.

Not Feeling So Great

I haven't been feeling that great this past week. Actually this cold/infection has been lingering now for about 2 weeks. It's been frustrating because earlier this week, I thought I was on the mend and so I went about my normal activities and we even had friends over for dinner on Tuesday and then Wednesday, things just started going downhill.... I was up Wednesday and Thursday night with hemoptysis, which is always scary for me. It didn't help that from Thursday til today, I'm not in my own house, I have been staying with my parents as Jim is at a mandatory work conference. It's one thing to feel lousy but it's another thing to feel lousy and not be able to get the sleep you need and not even be in your own bed. Thankfully, after a phone call to my doctor, and some new medicine, I was able to sleep last night without hemoptysis and even got a little exercise today. So hopefully, I AM on the mend now and I just hope that my lungs feel stronger and stronger each day. I have my cf clinic appointment scheduled for Feb 9th so I am hoping to not have to go to the doctor til then. It's during these times that I catch myself relying on 'me' way to much and thinking to myself 'what else could I be doing?' instead of trusting in the healing power of God. I am doing everything I can possibly do right now, I'm taking my medicines, doing my treatments, resting and exercising when I can. I need to leave the rest up to Him.