Slow down

I have felt in my spirit I have been rushing things. Trying to make things happen or wish they would. I do not know what I am in a hurry for. (LIke the Alabama song- I'm in a hurry to get things done, oh I rush and rush until life's no fun, I'm in hurry and I don't know why) That is what I feel like lately, like the clock is loudly ticking and I must do something to somehow stop it, slow it down, reverse it. Seriously, let's think this through- what if I do rush my appt, I still do not know what they will say. I do not know what the next step is. The next step will either bring me closer to an answer as to what the next step is or not. Either way the cysts still exist for now. I really think the whole rushing it issue stands somewhere with my struggle on unbelief for God to heal me. I really think that's what it is in a nutshell. I have seen God heal, been part and honored to lay hands and see it done. I have heard with my ears, seen with my eyes, and believed in my heart that God heals. So, what's up with me and this unbelief in me being able to be healed by the Lord, or should I say my unbelief that the Lord will heal me. I think that is where the root problem lies and maybe that's what this whole journey is about. I have a feeling it is about many things. It's similar when I go to a women's conference and maybe I don't feel as joyful about going as I should. I always think I am going for the girls to get closer to God and get a word from him for them, but every single time I come away blessed as well, and I am always amazed at that! So you see it's so similar. I do not want to go down this path, and I realize that God allows these things so he gets the glory, so even though I do not want to go and am still kicking and screaming inside :), I will go and he is blessing and will bless me, as well as those people he wants to reach by having me go through this. I love the parallels the Lord gives us, everything ties together and everything points to him, yet we are blessed because he loves us.

Thanksgiving

So far I believe I have found out that a person can not pass LAM on through blood in utero/urine/nursing. I am glad because I began to get a little unnerved at the thought I might have accidently passed something on to my children. Courage came unexpectedly and I called the Dr on Wednesday to see if 1. they had all my info/labs/reports of CT/xray and 2. if the nurse knew if he would follow a certain protocol and order a lung biopsy or not, and if so should I have it done before I come to see him so he can have results or??? I've been reading and I think (self-diagnosing is often a no-no) I need to get a CT of my abdomen first, because if I have benign tumors on my organs than there is no need for a biopsy. Time is standing still lately. I can not wait to see the Dr. because I am still hoping they are all wrong. You will probably get tired of me saying I am still hoping :) Had a few good days, no chest pain and not too much shortness of breath. Today, however it crept in. Not so much the chest pain, just the shortness of breath, doing the weirdest things too, putting on a shirt, and just sitting, amongst the normal coming up the stairs. Today while talking to a patient, it crept up on me and I was out of breath just talking to her. I was too embarrassed to stop talking and take a deep breath or two, until I felt stable, and so I just kept talking. It is a wonder I didn't pass out. I was pretty winded. I suppose over time the pride will leave and the need to breathe will kick in! Still thinking I am going to get in shape so I can see which symptoms are from being out of shape and which are from the thin-walled cysts in the lungs. Hope you had a fantastic Thanksgiving. I know we did, great meal and good company. We played cards and laughed and laughed. We have a lot to be grateful for, not only as a country but individually. Let us not take it for granted. Enjoy your week. Stay safe and I'll talk to you soon.

I want to live like that.

Ever hear the song, "I want to live like that." It's by Sidewalk Prophets. Listen to it or google the words to it. This fits me. The whole legacy thing. My biggest prayer- that others would see Jesus in me, often in spite of myself. I used to want to be a songwriter, but I could never get the music in my head to fit the words, so I stopped putting words down on paper. Music apparently plays a big part in my life, more than I realized. I remember a few years back when the kids were in Elementary school and we were driving somewhere, and a song came on the radio- I want to say it was Sara Groves talking about the legacy we leave behind, and I got to share with the kids how important that was to me. I wanted others to see in me the Lord. That was I said and did lined up with the Savior's love, kindness and grace. I like to think that stuck deep down in their spirit and that they always remember that. *****Still waiting for the December appointment with the specialist. Still hopeful that they will say everything is okay. Nothing really has changed, except I am getting my joy back and it feels good. I know you must be praying for me- thank you! I haven't had much chest pain lately and I am grateful, it allows me more time to not think of foo foo stuff (my words for wasted things that suck my time from me) and to focus on living life more = I want to live like that- also has a double meaning for me-- I also want to live as if this is my last day. Although, really if you knew it was your last day on this planet would you really go to work? Would you spend it at home with family? Would you travel somewhere? What calls would you make and to whom? Would you spend it indoors or outdoors? So when I say I want to live as if this is my last day- I think I mean, I want to get out and participate more in life. Be more active, spontaneous, humorous, a lighter sense of humor, not so serious :) I want to climb mountains, literally and figuratively. Just trying to decide what those may be. I suppose I should write out a list. Would be fun if you would make a list as I make mine and then we could help each other accomplish and encourage the other to get to work on it! *****Until the next time- have a wonderful day and make sure if you don't already-consider who the Lord Jesus is and what he is to you. Is your relationship right with him? If not, what do you let stop you on that?

Hypocrisy

While talking to some friends/co-workers, I discovered an interesting hypocrisy within myself. When I was young, I would lie awake at night and wonder if I should sign the back of my driver's license card that had a place to sign if you wanted to be an organ donor. I signed it and was ready, then as I got older, had children, I suddenly could not bear the thought of ever having to make the decision to donate their organs. God-forbid that it ever happen- but that is what I was thinking. I think I wondered what God would think of it- letting someone cut up the body that he gave to either me or my child. I couldn't stand the thought of someone doing that; it just sounded gross. Now I know it sounds weird; but that is where I was at emotionally at the time. Through the years when I would get a new driver's license I just didn't sign the back. I find myself in an awkward position, after talking to so many women, in the middle of their young and prime years, otherwise healthy a lot of them, aching with them for their need of a new set of lungs. See, you can not get put on the lung transplant list until you are very very sick. A double lung transplant means a chance at a whole new life. It means the opportunity to just be able to breathe, for seeing your children and your grandchildren grow and flourish. It means another day to make a difference in someone else's life. The irony of this is probably very obvious, but your viewpoint changes from where you are standing. How can I think that someday I may desperately want to be on that double lung transplant list if this all comes to that point, (still hoping they are wrong and/or I am healed) after all this time being against even myself being on the list to donate to others. Then there is also the irony of the person desperately wanting new lungs, but knowing full well someone else has to die in order for that to happen. That is a strange concept to get your head around. I did read an article where scientists are trying to grow human lungs. Cool idea really. The deep thinker/debater in me, wonders if somehow we aren't trying to play God somehow by doing all this. And so the cycle continues until I wear myself out thinking. Not sure it is a good thing some days to be a deep thinker :) *****I never did call the LAM clinic Dr. to see if they could take me in earlier than my appt next month. If they do want me to have this open-lung/VATS surgery, I'd like to get it before the end of the year. Still hoping he will say I do not need it, or you do not have this LAM, it is something else and we can cure it. I just did not call, not sure why, struggled with massive back pain all week and just think I was to wait and not call this week. We'll see what next week holds. I tend to run way ahead of where the Lord wants me, so I am working on listening and obeying right now. *****One of the girls sent me an email that reminds me in 1 Timothy 6:17 to put my hope in God, (paraphrased). Look it up. I leave you with that quote today. I wish you all the best.

Still hoping

Greetings- I trust you had a wonderful day. I often wonder what is going on with your world, I need you to post comments or I won't know. I had a decent amount of dizziness, lightheadedness and chest pain again today. Not sure what is up on that. It is never fun, kind of scary. Still waiting for the day when I won't live in any kind of fear that these cysts, especially the large ones are going to burst. Hoping after I see the specialist in December I will have a better outlook. Still hoping everyone is wrong. Still hoping I wake up and get my old life back. Funny, the things you take for granted. You know I have said for years that I often felt like I wasn't getting enough oxygen in the brain and I guess now it makes sense. Strange how so many things suddenly make sense and then in the same breath nothing makes sense. I can't say I feel like my world has stopped, but I feel a definite distance/distancing with me and most things. I read how that is also one of the steps of the grieving cycle. Still hoping they are all wrong. I also find so many others lately are having medical issues. It is like an epidemic. Really strange. Not sure what is up. I imagine the enemy of our soul is trying to do what he can to thwart God's plans for us and through us. Not going to happen. I hope whatever you are going through that you do not give up. The enemy of our soul wants us to - because then he wins. He is a loser and only seeks to kill, steal and destroy. We were made for so much more than allowing the enemy to beat us. Praying for you today. Talk to you soon.

First bill

Got the bill for the PFT before insurance. $1000.00! Crazy.. Still trying to decide what to do regarding having surgery or not. With the VEGF-D test normal range, they (as in Dr's here) still recommend having a biopsy, although now I am told only a VATS, instead of an open lung biopsy. The VATS is less invasive and the surgeon said he would start with that and if couldn't get /see what he needed would move during the operation into an open-lung biopsy. I still so do not want either. Just do not know what to do. Some women I have talked to are only out of work a week or 2 (I didn't ask what they did) and some are out for weeks. Some have no complications and some have many that last for a long time. Still others recommend I get no biopsy at all. Too many options leaves me unsettled. The holidays are coming and a family member may have to have major surgery in mid December and I want/need to be there for that. Maybe I should just have it soon and get it done with. I also want to have this surgery, if I am going to, before the end of the year since my deductibles have been met; it will save me quite a bit of money. That is really all that is new. I suppose that is enough :) Hope you have a wonderful day.

I didn't go to church tonight.. Just couldn't bring myself to. I had some chest pain today, kind of ticked me off. I had been feeling pretty well until today. My breathing was affected today also, I found myself sitting in the tripod position, which is where you lean forward with your hands on your knees, trying to get your lungs to expand more and get more oxygen. I used my inhaler today, which helps. The troubling part about that, is the studies I have been reading state that those LAM patients in whom bronchodilators work, by opening up the airways and/or decreasing inflammation, tend to decline more rapidly than those that aren't helped. Sometimes too much info is not a healthy thing. I have to keep reading though, I have to take my health in my own hands and figure out what the best path to take is. I have asked the Lord to show me what he wants me to do. I have been emotionally eating and now have gained approx 5 pounds. I never did get on the treadmill. I am finding it hard to do much lately. I feel like I am just existing. I go through the motions of living. I take the kids to where they need to go. I go to the store and clean the house - kind of :) Lately, I haven't had the motivation to even write. Again, I know .this will pass - but when? I always considered myself very stable person, but now I feel like I'm on roller coaster. Not liking it. I thought my pity party was over. Still trying to debate what to do- since the results of the VEGF-D test are under 600, that doesn't mean I don't have LAM, it means I have to possibly have a lung biopsy, of which I am dreading. Inside I am kicking and silently screaming to not get this done. The Dr's tell me I need it to get a good sample with which to confirm the diagnosis. They say the less-invasive bronchoscopy or transbronchial are only 60% of the time able to get a large enough sample. I think I have become paralyzed with this decision. I still have to wait until next month to see the LAM specialist to see what he does or does not want me to do. Regardless of what comes, a friend of me reminded me that God is in control and if he wants me to have this open-lung biopsy than I will have it because I know there must be a reason for it. There must be someone or some people somewhere that will benefit from my going through this. The Lord is faithful even when I am not. He loves me when I feel unlovable. He never leaves me or forsakes me. He adores me, and you too. And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28. Talk to you later.