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.