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.

What if?

Today was a mixed bag (yesterday), I do well most of the time I think mainly because I am around the children all the time, and when I get a minute to myself then I have too much time to think. Too much time to think about the what if's. Another beautiful sunny day, I actually got to watch the children (most of them) in their bible quiz meet. They did quite well, they were glad I was there, and I was certainly glad to watch them again, it's been a while due to our schedules. I don't even know if it's the what ifs hitting in; it may be more of a wishing I could trade half my life. Although, no, not even trade. I would not wish this on my worst enemy. There would be no joy in that. Just some times I forget for a little bit that I know more now than I did a bit ago. Just some times I wake up and for a brief second all is right with the world. What if I don't make it long enough to see my children grown? What then? Will they be okay? Who will love on them and hug them tight? To whom will they run to and tell their funny stories and adventures? How will they cope with the loss of me, their mother? You know that's every child's worst fear, to lose their parent or both. Don't you remember being little and wondering what would happen to you if your parent died? Would they be financially stable? Would they make the right choices in life? Who would be there to help guide them like I do? What if they get angry at me and feel abandoned by me after I have gone? All these fears creep in, like the progression of winter nights and soon it is very dark. I begin to wonder when the stability of my emotions will come to light. When will this cyclical feeling of despair and sadness, followed by hope and joy, level out into flat out joy and peace. Is this normal? When will it go? Will it ever go? Will I be like this until it's over? Yes, I realize how melodramatic this sounds. But I have to be real, with God, with me, with you or what else is there? I keep waiting for this big period of crying to come. The chest-heaving, massive sobs. Mostly what I find happens is little tears at various times/situations, just leak out. How fitting that the band Plumb, is on playing now. One of my favorite lines is "Standing on a road I didn't plan." "Just keep breathing." (This I find a most ironic line) and "God, I need you now." This song fits my life. I take great comfort in it. I need to write them and see if they will come and do a fundraiser with me for the LAM foundation. I wonder if they know what a difference they are making for me and others. I need to let them know. Another unique thing that has transpired as of late, is the song "Oceans" from Hillsong church. I was attending a women's conference and that song came on. I had heard of it before as my girls like to listen to it, but I had never really listened to the words in the way I did that day. They played it and I sang it with all my heart and meant every word I said to the Lord. You can play it on you tube if you haven't heard it. One of the lines, says "Spirit lead me where my trust is without borders, let me walk upon the waters wherever you would call me. Take me deeper than my feet could ever wander and my faith will be made stronger in the presence of my Savior." Think about it- I sang this and meant it, my feet could never go where this is taking me, my brain could never wrap itself around something like this to give me, so that I would grow closer to the Lord! (and take others with me) but God in his infinite wisdom and love, allowed this to happen for many good reasons, a lot that are yet to be known. Talk about trust without borders!! Wow, yes-- saying it is one thing, I meant it and now I get the opportunity to trust the one who made me. Who better yet to trust with my life, and indeed my childrens' lives, than our beautiful Savior. So, once again, what started out for bad, is yet again made precious when you bring it back over and realize the one who made you, loves you more than you can imagine and only longs to do good things for you. Have a wonderful night.

More cycles

Well, I met with the pulmonologist yesterday, the VEGF-D tests came in lower than they expected. It still doesn't mean I do not have LAM. It may mean I still have to have the open-lung biopsy I have been dreading. I guess I still don't understand it all. I do realize that it could be something else and they want to confirm it, but on some level after a positive CT, (LAM does not look like other diseases, it's very obvious) I do not understand why they just can not let it be. Is this to please the insurance companies? I have mixed emotions on this. Obviously, the best outcome would be to figure out it is not LAM after all and to find it's something that is curable. I guess my beef is that do I really have to go through this and then find out it cost me time/money and possibly complications to find out it is still LAM. I'd say the fear is getting to me on this. I absolutely do not want that surgery. I can not afford to miss work, my family, my church etc. Today, thankfully my chest pain, (that they still tell me doesn't happen with LAM) has subsided for the most part. It's only hanging around a "1" today on a scale from 0-10. I told the Dr. that many people I have talked to with LAM say they have chest pain every day, even ones with mild/early cases. The Dr. didn't know what to tell me, and maybe that it was GERD? I think comments like that make most LAM patients angry. Again, I am thankful for sunny days, and good friends who pray and lift me up. Thankful for my husband and kids. Thankful for the laughter that abounds in our home! I do hope your home is filled with sunshine and laughter. If not, I would say, Keep your chin up and take it one day at a time. Do one kind thing for someone in your household that wasn't expecting that from you. Have a beautiful day.

The Power of Friendship and Prayer

Last night I went to sleep fully wrapped in the love of my friends and the Lord. There is and was no doubt. It was such a beautiful feeling. I hadn't felt that in a while and it was SO refreshing. (The word so here is inadequate) More and more people are becoming aware of the situation and I find their words and hugs, empowering and comforting. A group of people last night, gathered around me and church and prayed for healing. I left feeling a stronger peace than I walked in the door with. I woke up the same way. The chest pain has not been as bad the last two days and I am thankful for that. When it gets more intense it is a little scary, because patients with LAM are prone to pneumothoraces, a collapsing of the lung. I am told it depends on the size of the cysts, (which small is considered mm's and my largest ones are in cm's), but also depends on the placement of the cysts. The closer they are to the outside of the lung the greater the probability they will burst and collapse the lung. Some women I have talked to have had close to fifty pneumo's. I can't imagine. Please pray for these ladies! Today I go my regular pulmonologist to get an update on some of my tests. I am not expecting any changes there from what I have already researched on my lab and PFT results, but who knows. I never did get on the treadmill yesterday - :( but hopefully today I will. I didn't tell my oldest I had made plans to yesterday or I know she would have held me accountable. It is important to get and stay in good health as someday down the line I may have to be put on the list for a single or double lung transplant, and part of the requirements entail being in good health and weight. Hoping I never get to the point where I need one- still hoping for healing and/or the rapture of course! I encourage you to go out on this sunny day, (hopefully it's beautifully sunny where you are and if it's not, it helps me to look at the clouds and truly remember and picture that the brilliant sun is just behind those clouds on the other side) and make a difference in your family, community and nation! Until next time- dear friend!

PFT

Woke up with a rough headache this morning, a lingering effect I think from the 4 puffs of Albuterol I had to take before doing a PFT (Pulmonary Function Test) yesterday to gauge how well my lungs are working. It's either from that or not enough coffee yesterday :) Prelim report looks like almost normal lung function, except in the alveoli area seems to be decreased. I'll take this for now. Looking at the bright side, things can always be worse, so I am thankful for where I am today. The children do not fully know the deal yet and for that matter neither do I. They know some things, as in I have cysts on my lungs and I get chest pain. They know I am awaiting blood test results and that I'll have to travel to specialists but I believe that is where their knowledge ends. I thought my oldest might know more, she has been very helpful lately, picking up a lot of chores and keeping the younger children lined out, which is making the younger ones not happy. They have called her bossy. :) I have a wonderful group of friends who love on me and support me. I was treated to a wonderful dinner the other night and they bought me a special book and each signed it! So thoughtful they are. I know many are praying for me and I am honored and humbled and grateful all in one. My mental and emotional level is much higher the last 2 days. Yay! Even I got tired of the pity party. I am sure it will rear its ugly head from time to time, but hopefully in a much more limited and shortened time span. My hope still remains in the Lord through all this, and as I said before Dr's can be wrong, and I am still hoping that everyone is wrong on this. I recognize that part of putting on my big girl panties is realizing where I get the strength to keep doing that, with the one who made me and promised he would never leave me. Have a wonderful day! PS. Today I am going to force myself to get on the treadmill. I know my oldest will help hold me accountable :)

Welcome!

Today I began blogging. I love to write and this is a great outlet. My reason for doing this is the doctors believe I have LAM- Lymphangioleiomyomatosis. 24 letters long; not sure why I felt the need to count it, but I did. Basically, it means that I have a rare incurable (at this time) disease that allows the growth of cells that take over the good lung tissue and cause me to have chest pain and shortness of breath. I am told I have a mild case. Every case is different, but they mostly all have the same thing in common, the recipient is a woman. The last webpage I remember reading on it said only 10 men in the world are diagnosed. They believe it is related to estrogen. It is a progressive disease and right now there is no cure. The 5 stages of grief I keep telling myself I am not going to go through, however I find myself somewhere close to the anger stage lately. I think I must be in denial still, although I keep wanting to deny that I am in denial :) I call it shock. I keep thinking I will wake up and life will be as it was before the day I checked into the ER for 3 days of chest pain. I have skipped the bargaining for right now and have jumped right into the depression stage. They say in this stage you may have regrets for time not spent enough with loved ones. I am blessed since we homeschool I completely feel I have given my children all of my time that I can and I am extremely grateful to God for having me choose that path. Welcome to my blog, I'd like to invite you to pull up a chair, grab a cup of coffee and join me on this path not well-traveled, if only as an observer. I'd like to think my love of writing will show through and you will feel as if you are right here with me, cheering me on, being there for me and growing with me in this journey and in return I can hope to encourage you, make you laugh and cry, help to think about what kind of legacy you want to leave. Welcome friend!