Another's perspective

Hello! I feel as if time has stood still lately. How about you? Everything going well? Here I am still waiting. Still wondering what to do, what the next step is. I have to fedx the CT disk to both Dr's and go from there. Still cycling through periods of, Yes, I should probably get the lung biopsy and then other times when I think I have made up my mind not to. Just now I am leaning I should, in case we are all wrong and it's curable. I've been doing my own research on the other differential diagnoses again. I really should stop. It's not healthy- ha ha no pun intended- but that made me laugh when I caught what I said. Today I was thinking what if I had a chance to look at my life from another's perspective. What would I tell myself? What would I see? Just trying to think what my life would look like to someone else was weird. I surmised I would tell myself to get off your duff, get the biopsy (in a nice way) and get on with your life. That I've been leaving too much life on the table and it's well past time to start living. Time is the ultimate intangible idea. It can not be physically grasped, but it is noticed and felt when it appears its coming is too long or its passing way too soon. Trying then to figure out how to make the most of the waiting game in which I am involved. As in most things, it is easier said then done. However, I did start doing SOMETHING! I got on the treadmill! Two times last week. It felt good although my back ached tremendously after, and I didn't even run- just fast walked. I keep telling myself it will feel better once I get in better shape :) Hoping for more energy too and being able to focus more clearly. Today breathing was hard, that air hunger kicked in. It was hard to get to sleep because of it. I don't like it when that happens. I wonder which part is real and which is psychological since I know what is going on now. My life lesson I am passing on today is this- When you know you need to apologize, even if for something little, go ahead and do it and quickly, lest it fester with the other one involved and grow bigger and cause greater problems.

Hoping you had a wonderful Christmas celebrating the birth of the Savior, Jesus! We had a sweet time. Only thing new here is the MRI is done, results are in, and so far nothing I can tell about there being any angiomyolipomas. So the next step should be biopsy, but since I can now not get it done in time this year, with my co-pays and deductibles all met, I am somewhat frustrated. Trying to remember everything happens for a reason. This is A LOT of money out of pocket for me though. Not very happy about that. The Dr. in Cincinnati still thinks it may now not be LAM and be Sjogrens manifesting as lung cysts. Still trying to figure what that means? I am beginning to think he might be right. Had to call the nurse manager at the LAM clinic to get the nurse to even call me back! One of the questions I wanted to know that didn't get answered there at my visit with him, was what were the other 3-4 diagnoses that it could be. I wanted to know them by name so I could research them, because if none of these are curable, then there is no big hurry to get biopsy so I would just wait until I absolutely needed to have it done. I was told that he wasn't going to talk about the next step until he saw my MRI! Really? Not impressed. So hopefully I might have some more info by the end of next week, but with holiday and poor communication I doubt it. That is about all that is new with me. Take care.

Something different?

Talked to another Dr out of the blue this weekend who looked up my CT. Mind you, I am not his patient. I love this kind of Dr/person who cares beyond the walls of the "regular" job and makes a difference regardless. He thinks it may be something other than LAM. He mentioned Sjogren's. Not sure what to think of this myself. I still have the cysts in the lungs. Sjogren's is an auto-immune disease. I thought we were through with auto-immune diseases or the possiblity of such, but maybe not. Who knows. I get an MRI soon and that will determine what the next step is. I layed in bed last night and thought of something I wanted to tell you and now I can not remember. Not sure what to hope for now. Reading a book on healing. Feel pulled in too many directions, too many stressors in too many directions. However, with God all things are possible. Matthew 19:26. It will be okay.

Waiting game-

The process of waiting. I wonder what the opposite of waiting is.. I'll have to look that one up. Not even sure why, I just want to know what the opposite is. I think I'd like to live there for a bit- in the opposite of waiting land. I feel frustrated now since going to the LAM clinic and not really finding out anything different. I am to get MRI to rule out tumors in my abdomen/pelvis to confirm LAM. Another dr thinks it might be sjogren's. I don't see it though, I do not have many symptoms of that at all. The lung disease and one other. The two main symptoms, dry eyes and mouth I do not have, that I know of. I did think it was fantastic that this othr Dr. out of the blue msgd me after relooking at my CT. He didn't even have to do that. I am not a patient of his. Why can't all Dr's be like that? Amazing customer service. So now I feel I am back to square one. And although nervous about the MRI's results- as I do not want the tumors. I am tired of all this. Seriously tired of it. I want to get on with life. Too many things in life are in limbo land right now and it's eating away at me. ** I found my Dr's visit to the specialist strange. Just to be in a place where so many sick people were walking around- 1. broke my heart. 2. scared me. Bad. I was almost in tears as I walked around the building. I still felt myself screaming inside- I didn't want to be there. I wanted to run and hide, have someone make it all go away. Still wanting that re-do. Then the next thing I felt was shame for whining inside myself to myself and God about my situation. Oh my, the people there, I ached for them. So many people so much worse off than I am. It was very humbling. There was a quiet solemnness in the air. It seemed to me as if people were walking around like robots. There just was no lightheartedness around. I didn't like it. So hopefully, by the next time I write I will know more. At least maybe if I have tumors in my body, then we can go from there to the next step. I am still trying to figure out what the next step is. The neat thing is God knows. And I keep thinking, "You silly girl, (talking to myself) why would you cave in to feelings of sadness, when tomorrow is a different day." I'm glad God loves silly girls too!

Signposts in the road

Hello, it's been a while. Computer issues and very busy. Many stressors in life, some of which I can not even talk about yet here. I was thinking today, that what gift could I give everyone I know. This is the season of giving. God, the father gave his only son Jesus to us as a gift, we just need to receive it and not reject it. So in the spirit of giving what could I give to everyone. I think I have got it. One of my favorite movies of all time- is It's a Wonderful Life. I can not watch it enough, year after year I do not get tired of it. I even have it on VHS. I thought how fantastic it would be if each person in life could get a glimpse of the difference he or she makes on others in this short time that we are here. What an honor and blessing to get to see that. To truly know that what you do, what you say, what and how you pray, that smile, that hug, those kind words to a hurting heart, make such a huge rippling effect in the world; what a precious insight. I have decided to pray that for each person reading this, forwarding it, reposting it. I want the Lord to show you those people to whom you have made a difference in their life. I want him to show you specific things that have changed for the better for you being here and fighting the good fight and not giving up. That ordinary days become lifetime monuments, signposts in the road to guide others around you to a higher calling and purpose. I want to share with you a personal note one of my children wrote me. I don't think they would mind or I wouldn't share it. It blew me away and I realized it for what it is- the legacy I have been concerned about leaving it manifesting itself while I am here. Thank you Lord is all I can humbly say. Read on- **"I'm sorry mom. I didn't mean to be rude when I said I didn't want any Christmas presents. And then when I told you to take them back cause you had already bought some. The Lord had just spoken to me today. He showed me that I have the greatest gift that could ever be given/received, but yet many of His children don't have that gift. So I wanted to honor the Lord and give up my presents. I don't need materialistic presents to remind me of the greatest gift that I already have. God has already reminded me of that. So that's just my heart on the subject. Whatever you choose to do I'm fine with because I also want to honor you and dad. :)" As you have probably figured out, I am humbled with receiving this msg from my child. So you see why I pray this for you, the Lord showed me this. He showed me the difference I am making. This is all about him though. It is the Lord who gives me what I need to help my child to this point. It is the Lord who gives my child this wonderful understanding and discernment and heart. The blessing comes even though it's all for him. He is showing me while I am still here the legacy I am leaving. He once again answers my prayers right before my eyes in spite of myself! Praying for you that the Lord reveals your "It's a Wonderful Life." to you! Because He lives- it is!

The Top 10

Hey there, hope you are doing well and staying warm. I got tickled earlier today, my warped sense of humor kicked in finally regarding this situation. My kids would say I am the only one that appreciates my humor and I reply right back that is fine, that is the most important part- that I appreciate it :). I was getting ready for work and the thought came to me (this may be considered inappropriate- so you may stop reading here)---- I better make sure to shave the underarm area in case I have a pneumothorax and some Dr. and staff I know have to put a chest tube in me! Cracked me up! I laughed out loud. I still laugh as I type this because it was just funny to me. So I came up with a top 10 list related to strange thoughts one must now have when it comes to LAM. NOt totally for sure how to make a top 10 list but here is mine and not necessarily in the right order. *#10-You suddenly value your health insurance more than you did. **#9-You find yourself clinging to sappy songs. **#8-After a while you are tired of sappy songs. **#7-You try to do more with your children to make memories. **#6-You find you have new courage to say things that need said. (that can be good and bad) **#5-You figure out this is not about you. **#4-You hope you can lose weight and get a six-pack of abs before they sedate you and roll you on your side for an open-lung biopsy, knowing your tummy will not stay in place once they do. **#3-No longer do you take breathing for granted. **#2-It dawns on you you must have your underarms shaved all the time in case of a pneumo. **#1-You realize you are sadly more concerned about your underarms than you are having a pneumo. With God all things are possible... Matthew 19:26

Chocolate Milk

Hello again, Yesterday when I was talking about God's got your tomorrow. This is true. He had my today, we made it through and made it well. We all laughed joked, got out in the snow and went to the store. Just being outside and with the children around me was fun. We had to drive slow since there was at least 8-9 inches of snow on the ground. We made it home safely. We had food to eat, roof over our head. Time still ticks slowly waiting for that almost dreaded appt with the LAM clinic specialist. Today I woke up thinking about it. Then the busyness of life and a snow day took over and I didn't think of it for a while. We all played the WII, Mario Kart (one of the kids' favorites). They are very gracious with me and usually one of them will pick to be on a team with me, which with almost 100% certainty means they will be on a losing team. It's quite humorous. * Still amazes me how some silly thing that happens out of the blue can affect a person. One of my daughters was drinking chocolate milk. She reminds me of myself when I was younger. She is so much like me! She was drinking yet again another glass of chocolate milk and had grabbed a straw and was blowing bubbles in it. It struck me, almost as if had been pierced with a hot iron in the chest. Wasn't expecting it, but this was the example I use sometimes when trying to explain to others about the cysts growing, multiplying and popping (thankfully not nearly that fast :) ). It hit me out of the blue. It hurt. Strange. I wanted to tell her NO! Stop! (as if by doing that somehow it would make this all go away) but she never knew it of course, none of them did, just you do, as I am telling you now. She had no clue what she was doing. And she didn't do anything wrong. But isn't that weird, little things set the emotions/feelings off and you can't ever tell when they will come. Oh well, life goes on. Just think only three months, here anyway in the States, until spring! Enjoy your day and hug someone you love!

Don't worry

Hope you have been doing well, not too much here. The cold weather I do not enjoy at all. I am a summer girl and I am already counting the days/months till it's at least spring. I did however get enjoyment from watching the children play and sled in the snow, they even wore the dogs out! When the Dr's say LAM they think is related to estrogen I think I can see the connection. This week started off with not very good breathing at all, had to use the inhaler quite a bit. Even laying down was awkward and I would have to take deep breaths just to feel like I was getting something. I can understand now why people get panic or anxiety attacks. It is a very awkward thing to suddenly realize you really aren't getting enough air- or in my case enough oxygen. I think sometime I will invest in a portable pulse-ox to measure oxygen saturation levels, so I can test my own theories on myself :) Sleep came easy this week and I did a decent amount of it. Must have needed it. The headache I had for three terrible days finally went away. I have been trying to figure out how to describe the chest pain to someone and there really aren't any words. It hasn't been too bad this week just a nagging heaviness. Then there is another feeling I notice also, I want to say it feels like when you are pregnant and you first feel flutters in your tummy. Somewhat like that and it's almost eerie, because then you begin to wonder if something isn't growing at that point in your lungs. Just weird. I don't like it- wish it would go away. Status quo- still waiting on specialist appt coming up soon, although not very impressed at this point, they haven't called me back when I left a msg before Thanksgiving, and the recording says to please not leave duplicate msgs relating to the same thing. So maybe I will just go to the one in Cincinnati, at least they would answer you back all the time, even by email. One of my daughters gave me a lesson on tithing, trusting in the Lord and not worrying. She opened her Bible after watching me do bills at the table and explaining where we were with the budget. It wasn't pretty and she watched me walk into my room and shut the door, which I don't often do. She knocked on the door a bit later and came in with her Bible open to a page she wanted me to read. It was on not worrying. She is right. Love that girl! Have a great day. Do not worry about tomorrow. God's got your tomorrow.

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!