Quiet reflections

As the end of the year arrives.. time to reflect back on changes in my life. Quite a few. Adoption is closer. Change of location. A different school setting for one. A new dog found us. Some ongoing family issues that need resolved in a Christ-like manner. Been an interesting year. I am blessed for sure. I hope you see that you are also. *I got some news today that I didn't want, but really knew was coming. Apparently, when I sleep my oxygen sat's go down to 83%. That is not very good. Around 70%, you are basically circling the drain about to go down. For those who aren't medical 98-99% is ideal. 100% is the best you can get. That really explains A LOT! I really have felt over the last few years that I am having trouble with clear thinking, being able to process things like I used to. I would try to explain that to some, and I always felt like I wasn't really understood on that. I have felt like I have been very fatigued and just figured because I was overweight and hadn't been exercising much. Now, I have the reason to explain these things. The tissue in my body, brain included has not been getting enough oxygen when I lay down, which causes me to be tired and try to lay down more, which causes more hypoxia. Quite the cycle- one I do not want to be a part of. The Dr. office called today, and gave me the results and said I would have to wear oxygen now at night. They said if they don't call you in a week, meaning the home health care people), then call us back. Well, they called less than 1 hour later. They will be out here later today to do what they do and bring oxygen etc. Good thing in the last month the hubby has not smoked in the house once. Unique isn't he? God, how he plans/times things so well. How many years I have asked, pleaded, cajoled, yelled even to please smoke outside and he wouldn't. Well, in the last month he has by himself, smoked outside, the change of location helped for sure, but he did this himself. And then 1 month later, we find out I must have oxygen at night. You can not have open flame by oxygen, so it is imperative that he not smoke around the O2 tanks. And I have not had to say anything about it. I have mixed emotions on this and at one point thought I was going to tear up /cry due to this finding. I mean, seriously, home health? ME??? Just doesn't make sense, doesn't fit. I am not to be on this road but I am. I felt a pity party sneaking up on me. But I can not live there long. True, it is another step in a direction I do not want to go, however, I do know how good I felt in the hospital being on oxygen and no one really seemed to appreciate that. At least in my mind, they didn't. So, I am looking forward to how good I may feel starting today. They also found I have excessive limb movement in arms and legs and said if I was symptomatic, as in waking up a lot due to leg/arm movement/pain etc that they would run some blood tests to see if I had restless leg syndrome. I said no, just wake up a lot due to flipping and tossing and turning trying to get the back to not hurt. I do have a family member who has restless leg syndrome and it doesn't sound fun. Hope you all had a good 2014. Looking for a better 2015 for all of us. Remembering God is in control. Merry Christmas and Happy New Year! Much love,

Status quo-

Been a while since I have written. Been busy and I think somewhat depressed. Not even really know what over, as I have NO reason. A lot of changes lately, not so much with my health, but more with my life in general. Saw the Dr. in St. Louis. He said everything was status quo- meaning lung function still the same! Yay! I really had a feeling that was going to be the answer. I did have a cyst pop about a month before that and gave me a lot of bad chest pain/lung pain and shortness of breath. Missed a day of work. Don't think I have had one pop this week, but boy since Tuesday pretty decent lung pain and sporadic shortness of breath. Really frustrating. It coincides with the menstrual period again. Took pain pills for 3 days, one night couldn't sleep due to the hurting. Now it is there, but is intermittent. I can't work and take the pain pills so just have to suck it up the best I can. I met a wonderful LAM patient in St. Louis who I have been wanting to meet for a while! Such a lovely, caring, knowledgeable person! Didn't have much time but she was sweet to come to my appt. with me. Still struggling to find forgiveness with a child molester who, well I can't go into details now, but just really need prayer for this. I know I am the one caught if I can't find forgiveness. Need wisdom and discernment how to raise this child too. Life again seems too busy. I want a vacation- think I need one, and afraid I won't get one for quite sometime. The kids sooooooooo want to go to Florida.. I think I want to worse than they do.

No panic

Really rough week or so lately. About 10 days ago, felt a strange big pop in my left lower lung area. Somehow there is no other feeling like that, I knew as soon as it happened what it was. Second time I have felt that. I had a lot of chest pain after that and some shortness of breath. Worse over time. Had a friend listen to my lungs she said they were all clear. I didn't really think I had a pneumo, but wondered/wondering if I didn't have a PE (pulmonary embolism- blood clot in the lung). I did run out of my Xarelto for almost a week, kind of let it go on purpose, my back had been hurting so terribly bad and really wanted to take some Ibuprofen, so just never really filled it and let it go a bit. So I began to psyche myself out that I might have a PE. I suppose I should go get an xray at a minimum, but I am a little afraid 1. what they will find and what that will mean for me, and 2. that an xray won't show diddly and they will want to do another CT, that would be 3 I think in one year's time- (this weekend is the year's anniversary since starting to be diagnosed with all this junk}. Well, then to add fuel to the fire- (warning- any men reading this might want to stop here)- I started this weekend, I hadn't done that in a few months, and it is bad- it always makes it harder to breathe along that time of month, but wow- feels like the "double whammy." ** On another note- I am trying to figure out how, in what way, in whose strength- ( I already know who will give me the strength) I am going to forgive the jerk who molested someone I love. I do not know which is worse- that I see no remorse or that he lives so very close and we have to see him a lot right now. I guess it does not matter. I am not called to worry about those things- but to set them aside and forgive. Just pray for me please- trying to process it. Pray for my kids-- I apparently am more crabby that I realize this week :( ***Fall is in the air.. it is already too cool for me- the blood thinners do not help- I am just a summer girl and really want to move to Florida- but they say never to move to where you like to vacation- because then that glorious place loses its sparkle- and so it is with human nature. **The hormones must really be playing with me-- Do you ever feel like you are losing your effectiveness as a Christian? I think I am there. I do not usually feel this- it is a rather uncomfortable feeling. I do know people are watching- I just think what they are seeing in me is not what I want them to see. Think it is overdue I ask the Lord to take the yuck out of me again. Make me more like him, everyday in everyway. Blessings to you all- As Pastor said- "The best is yet to come." I do believe that. I also heard another one say-- "In God, there is no panic." That is true---- Selah-- means think about that really hard. Blessings-

Three would be neat!

Didn't realize it had been a while since I had written. Life has been crazy and way too busy. School started a couple weeks ago and with the amount of activity required to get ready for that and some reoccurring back issues- I hadn't thought much about my writing. We still homeschool 3 of the kids, one wanted to branch out and try something different and is going to a private school. Can you say second job? So between carpooling now and many miles put on the vehicles, just feel like things are standing still on the health front, but honestly I think that is a good thing. I haven't thought about me much and I like that. I really do not even think about it until someone asks me about it. Must mean I am having some good weeks- it's all relative. I consider myself very healthy so that is that-I guess for now. Still disappointed I am not getting up and exercising- had such high hopes- but maybe tomorrow :). I haven't emailed the Dr about the sleep test, but it is required that I go see her to set one up- as I haven't been there in a while. I just haven't had the time or desire to go do that yet. I haven't even made a move to get more blood tests done as the good Dr. in Cinc. wanted. I came home from Ohio, put the binder in it's place and just got busy living and haven't looked back. I still get short of breath, dry cough, fatigue, and chest pain that comes and goes. Overall, doing well and glad of it. Not even sure I can relate to a lot of the LAM patients I hear about just because I feel I am doing so very well. I think I am becoming rebellious in the fact I do not want to take the Xarelto anymore because I have heard such bad things about it. I can not wait to get off of it and have missed a few doses and taken instead Ibuprofen (how I miss it!) for my back instead. Makes work go soooooo much better, not being in pain all the time from helping to move/lift 400+ pound patients! Yes, I know- stupid, but sometimes you have to help. I probably do need to get back on it- so will get it refilled and start today. I do have an appt coming up next month at Barnes with a rheumatologist the others wanted me to see. So off I go again. I think I am beginning to feel like going to these appts is a waste of time. I know the Lord gave me peace about it- so I guess I am wondering why I am still going through the motions of going to see them? Can anyone answer that?? ** Random topic- I saw the most beautiful vibrant double rainbow that I have truly ever seen. It appeared to be so close to me. I have just never seen one that close up. Hard to describe. The colors were almost milky and yet clear and transparent at the same time. So bright and yet soft. Just amazing. Frustrated that I was driving and had to try to keep my eyes on the road and not on the rainbow - the main one, that was the brightest. Then the thought came to me- I think I will add to my bucket list- to see a triple rainbow! Wouldn't that be neat? Wondering if anyone else thinks such random thoughts as I do? *** Enjoy your week, hope you have just enough rain and just enough sunshine to appreciate them both.

Trapped

Well, I went to Cincinnati. It was good to get away, although it wasn't long enough. It was just good to get away, change of scenery. I probably don't need to be writing tonight because I am in a foul mood. My back has been out for a week, and not getting any better. The medicine I have to take for it makes me irritable and hurting makes me irritable- so between the 2 I am not in a nice frame of mind. So the trip to Ohio- I finally got to meet the good Dr. from Cinc. He is a good guy, I like him. Very thorough. Where to start? Not even sure anymore. He did say he thinks I should get sleep test to see if my sats (oxygen saturations) drop at night as I have been having clouded thinking for some time now and I think it is getting worse and get very fatigued at times. He wants me to continue to see the Dr in St. Louis and see him in Ohio as needed. He says he believes I have LAM, although that is not the main issue. He said the Dr. in Ny and Mayo did not agree in their reports with what I have. He said he has not seen this before, so he was going to get with them both again and see if they can't all figure out what is going on here. Said again we will probably never know what is really going on/causing my issues. He did tell me I needed to move out of my house. It has flooded 3 times, each time a cleaning/restoration company came and lifted up the carpet dried it out and then re-laid the carpet down. I had seen mold down there, sprayed it with a bleach mixture. It went away so I didn't think much of it- but I do sneeze almost every time I go down there.. hmmmm... He said he's only had 3 patients in his career that he has told to move and I guess I am one of them. Easier said than done. This is the 2nd reason to move. The first lives across the street. I can not go into details yet, but need prayer there too. He wants me to not eat after 7 pm as sometimes when you sleep if you aspirate any acid that comes up it can cause some of the issues I have. I do not normally have heartburn so who knows. I'm trying to think of some of the other things he said. I have slept since then. He did think I could get off the Xarelto after a while and not be on it forever (as the Dr in St. Louis said). Seems a lot of things they will prescribe/do for me will be based on best judgment and not any tested path since we still do not really know what is causing my lung issues. He did say the clots are being created in the lungs, not transferring in from somewhere else. With the Xarelto being so new, there is so much they do not even know about that. So basically I feel trapped in this body with funky lung stuff. I want it out of there. And nothing I can do about it. I could go on and vent about other things, but think I will spare you all and just take it to the Lord. I am feeling trapped in many, many ways and not sure what to do about it. Usually I can figure out what to do or at least deal with it well. Now I haven't a clue and I am not dealing with it well. Even that makes me irritated. I think I need a vacation. Another night of writing- I forgot to mention he still thinks I have Sjogren's also. So both LAM and Sjogren's. He thinks some of the cysts in my lungs are actually Sjogren's cysts. Even though all of the results have come back negative/inconclusive- he said it is a sneaky disease and if I remember correctly he said can manifest in different ways. Told me again we probably will never really know what I have/what is causing it. I did see on a commercial yesterday that Xarelto has been causing some serious consequences including irreversible abdominal bleeding/death and stroke. Seriously?? I think I'd rather get off it. Thankful I do not have to take it for very long. So I feel trapped on all sides. Literally, trapped with the situation across the street, trapped with a family situation, trapped with a lung situation, trapped with a financial situation now, trapped in a job due to my own doing. The Dr thinks I need to examine myself for depression. He asked me if I was under a lot of stress :). Ya, I'd say I am. Regardless, I know where my strength comes from. I will count my blessings. They are many. God is good and doing so many amazing things around the world. Who am I to complain? He is so much bigger than my measly problems. I will take my petition before the Lord. He will answer, deliver and defend me. He is the righteous judge. Nothing escapes his eyes that roam to and fro all over the earth. Thanks for letting me vent. I feel better when I remember all He has done for me. Hope you are too. Much love-

Perplexed

Hope you are all doing well. I got a call from the Dr in St. Louis. So far more of the tests that he took while I was there have come back negative. We won't know on some until 3-4 weeks go by. He did say the Dr. in Cinc Ohio thinks it is still Sjogren's. I am struggling with that. I don't see it. I still do not have dry mouth or dry eyes at all, never have. None of the auto immune tests have come up positive, they are all negative so???? Anyway, they want me to come up there and see the rheumatologist at Barnes. Okay, I can do that. He said that they are "perplexed" by my case. Not even sure what one says to that. Not a whole lot to say about that, except that is not necessarily a good thing, but sure is a good way for the Lord to show himself omnipotent. I still have a weird sense of peace about everything. Can't explain it- I do feel like I got a lot of my life back with the no enlarged pulmonary artery/no pulmonary hypertension. That was such great news! On another note, I still feel like I am stuck in limbo. Too many things are up in the air, not enough decided. Some details on things, I still can not go into, give me a month or two, but this medical stuff, some of our school decisions. Just too much stress I guess, maybe that is it. Feeling like I need a break, not sure I can get away to get a break is the problem. Can't explain it- just feel as if I am stuck in mud. Can't seem to get going out of it. Have been reading my bible more and praying more, usually that alone is enough to pull me out of any funk I am in, but can tell this may take more. Pastor has been preaching on fasting and how some things are only broken by it, so here we go. Going to do it. I would encourage you to do it with me. Either a meal, or a day of fasting, or if you are diabetic or health-wise you can not. Fast the TV or internet, sacrifice something and in it's place put fasting and prayer in order to draw close to Him. Let me know if you do and what the results are- would love to hear. *More random thoughts- someone once asked me what hobby do you have, and I had to sadly say, "I do not have one." The look on her face made me feel like I am the only one in the world that does not have a hobby. That can be a bad or good thing, I mean no hobby, means I am either a workaholic (which I am not anymore :) ) or we are just way too busy for me to feel I can take time out for myself. I think I need to make time for myself though. I think I am still so used to doing things by myself that I just do not know what to do with myself when around others. Sound weird? It does to me too- because I love people, love to care for them and interact/encourage them, but just sometimes don't know what to do/say around them, especially people I do not know. A good friend told me that she and I both are used to doing things by ourselves and that isn't a good thing. She volunteered to go with me to Ohio and I said I was pretty good with going by myself. We'll see. My two oldest girls are at camp right now and oh my goodness do I miss them. I did better with it last year than I am right now, not sure why. Just can't wait till they get home. We are all very close and it's strangely sad how quiet it is without them around. My son reminded me I would have him around for quite a few more years to come- which put a smile on my face. I think he is enjoying that thought actually, as he already is realizing he will get more attention than he already does. :) He and I also are very close. Oh, that I might have my request, that God would grant what I hope for, Job 6:7-9

Strange things- found this old post- I never posted it :)

This is so weird! I subscribe to a post on Alpha Omega Publishing, (we used their homeschool curriculum for a couple years) and I so enjoy the encouraging posts that are sent out. So this morning I am reading yesterdays post again for the 2nd time and I decide to go in and read posts/replies that readers have put on there. Check this out- I found my own post that I had put on there almost 3 years to the exact date! I posted it on 3/22/11 and today is 3/23/14. That is just weird- 1. that I went in and read old posts/replies by others, and 2. that I found a post that I put in there 3 years ago. I didnt even remember posting it until I started reading it! That is just crazy. It was also a reminder to me of where I was then and how the Lord has graciously delivered us and how much the children have learned since then. The posts that others put were sooooooooo encouraging and helped me/everyone to see that we were not alone in our struggles. You see the enemy of our souls tries to take us down, constantly, so we must wear the full armor of God to thwart the fiery darts of the enemy. It's when we let our guard down or get too busy with life that bad thoughts, bad decisions, bad outcomes arrive. We must keep up our guard and here is why- The Armor of God 10 Finally, be strong in the Lord and in his mighty power. 11 Put on the full armor of God, so that you can take your stand against the devil’s schemes. 12 For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. 13 Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. 14 Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, 15 and with your feet fitted with the readiness that comes from the gospel of peace. 16 In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. 17 Take the helmet of salvation and the sword of the Spirit, which is the word of God. NIV

Good news for a change!

Hey there, Went to St. Louis over the last week, my Dad has been sick but is doing better now, thankfully. Met with the specialist while there and he stated he believes that Mayo has an "alarmist" position with their results and he is not convinced I have an enlarged pulmonary artery or pulmonary hypertension! He and others in his network looked at my CT's and other reports and they don't see it. That is GREAT NEWS! for those who don't know the seriousness of it-- trust me-it's great news! He ran some more blood tests and is going to consult with the good Dr in Ohio, and then get back to me in a week. He even said he thinks I can get off the Xarelto (blood thinner) within 6 months; I won't need to take it for a lifetime! Woot! Woot! Hoping this is all right of course. But this was the glimmer of hope I was hoping for! God is good! I do not understand it all yet and I keep thinking of more questions- but for now, for today I am relieved. We talked about the LAM and how it affects every woman differently and how I was trying to figure it out if I have mild LAM then why do I get so much air hunger at times and shortness of breath for no reason. No apparent rhyme or reason when it strikes. Sometimes, like when I bend over or sit up or walk up stairs I get that way. Yet, also I can just be sitting somewhere or standing, and it hits- I can't breathe well. He then kind of questioned my terming it "mild LAM," as if there was such a thing and said it just depends on so much. The vital signs often do not fit how a LAM patient is breathing or feeling. I did another PFT test and from what I glanced at- I believe this test was better than the last one I took there. Wondering if that is from the blood thinners and me getting more blood/oxygen around? Who knows? Excited now because if I do not have pulmonary hypertension or an enlarged artery then I should be able to exercise! I of course forgot to ask him about that. This also leads to more questions though, as in- If these are micro clots and we do not know why they are there, how can we be sure they will go away. (I do not want another biopsy- EVER.) And why wouldn't I need to take them for a lifetime? If this chest pain is not from pulmonary hypertension/enlarged pulmonary artery and not supposed to be able to be made from the LAM, then what is it? It's all good though. I got a sliver of good news and I am clinging to it! Thank you Jesus! Pray for those with LAM and rare incurable diseases or just diseases in general. ****** The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to tread on the heights. Habakkuk 3:19 NIV

Not much

Hey, It's been a while. Hope you are doing well. Not a whole lot new here. Going to Barnes/Wash U soon. They tried to re-order some tests that I already took, like VQ scan and Echo, then I realized that I had never sent this Dr. in St. Louis my updated chart/files from the past year since the lung biopsy so I had to sign a lot of paperwork to get that done. So far I think they are all sent, CD's and all of the MRI's and CT's. I remember way back when, deciding not to send them because I wasn't planning on going back to that Dr/nurse/office. How things change. *** Pastor preached a timely message on how David, King David in the Bible, consistently asked the Lord, inquired of the Lord what he should do. And then he obeyes. He gave a warning to a lot of us in the church that we were about to do something that was just going out on our own, in our own knowledge and not what the Lord wanted us to specifically do for this time in our life. Was very timely as I have been trying to figure all this out and make decisions on which direction to head next. So, I have been slowing down and asking the Lord to guide me and go before me and lead me/tell me what I should be doing, if anything and when. So needed to hear this. I just love our church/pastor. *** Same old stuff, chest pain and shortness of breath, air hunger. Comes and go, often no rhyme or reason, scary at times. The fatigue comes and goes too. It's shocking how it sneaks up on you. But-you just regroup and go on. Way too much to do, no time to feel too sorry for myself. Getting tired of the whole thing I must say. Just want to focus on having a summer and already it's planned out wayyyyyyyyyyyyyy too much with Dr appt's, tests, etc... Feel like I am going to miss my favorite time of year and it's right under my nose. ** I still would request your prayer for the neighbors to move. I can not wait to be able to elaborate on this. The time is coming soon. ***Remember to inquire of the Lord in the big things and the little things and be specific in your requests. Have a beautiful day!

Rough night

Having a rough night tonight.. Not sure why.. Just feel under pressure.. both figuratively and literally. Frustrated with the progress on getting in to see the right specialist.. Just worn out keeping track of it all. A little nervous tonight. Don't normally get like this.. thinking I am just tired and need some sleep. So far everything is still coming back negative. CT and echo done. doesn't show too much at this point. still needing the right heart cath. trying to debate Barnes or Mayo.. Barnes is in the network so obviously cheaper and family there, but Mayo is known for being a whole lot better.. Trying to decide. Ever had time tick slow but yet too fast at the same time. I feel as if I am being stretched and pulled at increasing rate, but time is passing by slowly while it is happening. Weird feeling. Hard to describe. Don't like it or understand it fully. Was glad to make a few people smile today and encourage them. Have a good night. Hug your children and spend more time with them today then you did yesterday. Matthew 19:26 With God all things are possible...

More updates

Hello! Been a long winter. Hope you are having warm sunny weather where you are, literally and figuratively. I did decide to go see the good Dr. in Cincinnati. Will be going there this summer.. Also decided to go to the NIH. Most all of my tests are coming back negative. They are running quite a few rare blood tests trying to figure out what is causing the blood clots in my lungs. They think they are contained to the lungs. One of the tests came back positive. A lupus anticoagulant antibody. Basically what I have learned from the "good Dr." (that's what I have nicknamed him), is that you can have this and have Lupus, or you can not have Lupus and have this anticoagulant. In simple form, the body makes a substance that doesn't allow the blood to clot, it allows it to flow nicely as it should, well the anticoagulant antibody irrationally attacks the blood/blood substance and can make the blood clot. This could be the cause of my problems. They are also testing for hypersensitivity to mold as our basement has flooded 3 diff times and of course the place where I work has its share of issues too. We will wait another week or 2 to get these back. I keep making the mistake, or causing a testing of my faith when I get on the internet and read up about a lot of this. For instance, I read that the pulmonary hypertension/enlarged arteries I have give you a lifespan of 3 years from onset of symptoms if left untreated. Well, obviously that could tend to get you down if you allow it to. The key is to give your praise to the Lord in all situations as He is in control and He alone knows what is on the other side of this mountain and how he wants to use you to bring others to a saving relationship with Jesus Christ. I do need to educate myself on this, it's the only way to keep pushing the doctors etc, since I am the general contractor of this adventure, second to the Lord of course. My Mayo report still has not shown up in the computer system of the hospital I go to, meaning now for 2 specialist appts it has not een in there. (And, no I did no make a master file yet- my bad) So I called yesterday and left a msg for the director of pathology to call me back to discuss this oversight. What if I presented to the ER, unless they knew my situation, the ER docs would not be able to pull up that report and see what was really going on with me, thus wasting valuable time in my treatment, possibly harming me inadvertently. So we will see where that goes. The good Dr. wants me to have that right heart cath, so I will do that hopefully soon at Barnes. That will show what level the pressures are in my heart and lungs. When your lungs are clogged with blood clots the heart has to work harder to push the blood through the lungs, thus causing an enlarged pulmonary artery and then eventually it backs up/makes the heart work harder and leads to right sided heart failure. Hebrews 11:6 And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him. Hebrews 11:5-7 (in Context) Hebrews 11

Update

Hello. Been a little while. Hadn't really felt like writing too much lately. I think I am just feeling sick of this junk. I feel like I am in a rush- but for what? Closure?? What would closure even look like in this situation. Prob not closure. I think maybe just to move on to the next step. Maybe to get some good news that this is all curable. Maybe to wake up and find my life is back to how it used to be. Yes, I am whining, tired, worn out, need a vacation from work. Lifted the lawn mower up with my son onto the back of the truck bed and then later that day helped lift a somewhat unresponsive patient up on the bed. Not good. It's been out all week since then. I can not any longer take Ibuprofen since I am now on blood thinners due to the clots. So unless I take stronger meds like hydrocodone or tramadol I am stuck just suffering as Tylenol doesn't get this type of pain. *** I did receive an email back from the Dr in Cincinnati. He thinks for sure there are blood clots based off the biopsy sample. No way they could be anything but. He also is leaning auto-immune disease still. Possibly even a long shot he said, but IgG4. He did warn me there is no way to put what is going on in my lungs into an easy diagnosis. He thinks I have LAM and something else. Lung issues are hard to put in a box and not easy to figure out or solve. I did tell him I would come see him as a patient and then we will go from there. That really is all that is new with me. Feels like same old stuff different day. Kids are trying to talk me into taking them to Florida again. Not sure we can swing it- they said they are willing to save their money from their babysitting jobs and lawn mowing company etc etc. to help pay for it! I sure would like to go. Just to lay there and veg on the warm sand with the wind, sun and surf. The sights and sounds of the birds and children laughing and playing. My kind of day. Have a good week. Talk to you soon. I had a wonderful scripture for you and now I forgot it. Was in Deuteronomy I believe. Oh well. John 14:27 Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. John 14:26-28 (in Context) NO FEAR. I forgot to tell you the best part- the Dr does NOT think I need a pulmonary endartectomy (although haven't figured out how else to get the blood clots out?) nor do I need a lung transplant! Don't know if he meant now or in future. I can't wait to pick his brain in depth. Starting my list of questions.

Funk

Went to the hematologist today. He said he definitely does not think their is a hereditary clotting disorder going on. Said it is localized to my lungs only. Wants to send me to a rheumatologist to check the auto-immune route.. thought we'd already been there. So we'll see. Beginning to feel like chasing a rabbit. Waiting on Dr. in Ohio to determine which would be the best Mayo Clinic to go to. Talked to a friend today who mentioned how they went to a Mayo Clinic and how they wish they had done that 5 years ago. They were able to find out about a certain issue in a short amount of time, that they had spent years/dollars trying to find answers at a local hospital. Kind of got me thinking-not to waste time and get to the Mayo Clinic and to NIH for testing/eval/studies. I do not feel like I have much time to waste. I have SO realized the importance of staying on top of your health information and following through on things. For example- today I went to the hematologist. They draw the WBC (white blood cell) count and then wait for that, then take you back to the Dr. He came in and we were talking and he had a bunch of "old info." He did not have the Mayo report of the biopsy. Apparently the referring Dr did not send it. This Dr. works off another system so they had no way to get it. They called the pathology department to no avail. So, ME THE PATIENT, calls the referring Dr. whose secretary states they gave me the original report and did not keep a copy? SERIOUSLY?? What Dr. office does that? She acted like I was in the wrong? Crazy. So then I call Ohio Dr. thinking okay, they have a copy they can fax me one. Had to leave v/m. So I called pathology dept. (yes the same people who lost the original report from Mayo for 3 weeks before I called up there twice to get it!) She had not sent it to be scanned into the computer system so no one could find it- she HAPPENED to have a hard copy of it there so going to fax it to the Dr. right then. So about 10 minutes, then 15 go by and NO fax. Dr. comes back to tell me they are still waiting on it. SO ME- THE PATIENT, calls back to this gal again. "Oh, it didn't go through." Seriously?? That is your job to check and make sure it goes through at the time of faxing it!!!! Aaaaaaaargh. Thanks for letting me vent. I just can not believe how this all happens.. and if it happens to me- you know very well it happens a lot and to others. What if they were old and didn't follow through or were too sick to put out the effort, or just didn't know how to get involved in their own health care. It really bothers me. Helps me to realize how to be a better nurse in general. So after all that, this Dr. says it may be idiopathic- meaning we may never know the cause of why this has occurred. I think I am okay with that. I'd just like to get through it :) I have been getting short of breath a lot lately- again, still trying to sort out what is psychological and what is real. I get dizzy and feel like I am just going to drop because I am not getting enough oxygen to my brain. I have been saying this for a few years now. It's not a fun feeling.. Kind of worries me. Still have to get some paperwork/CD's of MRI's/CT's to the NIH, National Institute of Health so I can go there and get evaluated and tested to try to see what is going on/get in a study. I may not qualify did I tell you? At least for the LAM study because of my other issues. Sounds like they still want to see me. Something weird too- this Dr. today said the only real thing to do with my lungs is to treat the symptoms, which really goes against all the studying/research I have read on CTEPH. Such lesson for the day is remember your Dr's are human and although they try, NO ONE is concerned with following through on your own medical case as much as you are- so stay in the game and do not take no for an answer. Follow through on all aspects and get the care you want and need. On another note, picking up some more hours at work, not only to pay these bills, but the kids are pretty much begging to go to Florida and of course I am not fighting them on that since I love the ocean/beach so much. I told them this time they would have to help out and put some of the money they are earning this summer towards that. So MOST have agreed. Will be interesting to see how it all pans out. Lastly, I can not at this time go into detail- but really need some serious prayer that the neighbors move and quickly. Soon enough I will fill you in- until then please ask the Lord to have them move. Thank you. Random observations - The very best days are these- when you make a difference in someone's day/life and you see the progress your children are making in their walk with the Lord.

Pulmonary Endartectomy

Greetings everyone! I hope you are doing well. I have regained some momentum and started researching again. Basically, what I think I have found out is this. The only definitive treatment for Chronic Thromboembolic Pulmonary Hypertension is a Pulmonary Endartectomy which consists of well I probably shouldn't say on here. It may sicken a lot of non-medical people. Again, I find it fascinating, I just do not care to be on the receiving end of it. This surgery is not for everyone. It depends on where the damage is, how bad and if they think they can get it all-(this from my understanding). The surgery basically consists of cutting open the chest, shunting the blood with a machine so they can operate mostly bloodless and deeply cooling the heart for surgery. Not a fan of cold. :) ** I have been in contact with the NIH, National Institute of Health in Bethesda, MD. She said the fact that I am on blood thinners now may preclude me from being able to enroll me in any studies for LAM. She did say however obviously I have a very strange case going on and they would most likely want to see me. Sometimes they only see you once, sometimes you are called back for more testing, follow-up and/or studies/treatment. They fly you up there, pay for everything, poke and prod you, and then send you home with your results. This to help you find out what is wrong, yet more importantly to help the next generation of those who become afflicted, hopefully to prevent. ** I have been touched lately in many ways. A dear co-worker who broke my heart when she let me know she cries often for me. Another co-worker who doesn't like anyone to touch him who after reading my Mayo report came over and absolutely bear-hugged me. I truly believe he was praying over me as he hugged me; he also cried in front of everyone. Very humbled by all this. Another who slipped a gift card in my pocket without me even knowing it! The extra person at the altar praying for me, who wasn't there, no one saw this person praying for me. Just amazing really lately. So thankful to not only know, but to see that the Lord is there and working. To be a part of something so much bigger than myself. 2 Corinthians 4:8 We are hard pressed on every side, but not crushed; perplexed, but not in despair. Okay, I had to regroup and edit this and find the right scripture for the day.

VQ scan results

The results show low risk for me to have a PE. They rate it on high, medium or low risk. I'll take that. They were going to keep me they said if medium or high risk. Thankful it's low. That did not include any of the occluded arteries, they were just looking for PE and that only. I emailed the Dr. to see what the next step is. Will have to see still which Mayo to go to. That's really about it. Talked to an ER doc who asked how or if they know if the vessels are occluded from the inside or the outside. Good question. I have no idea. So many questions, few answers. Did I tell you I went down for prayer Sunday and my friend Bethany went with me? I had been hoping to grab her parents too and have them go down and pray with me but when I got over to that side of the sanctuary I could not see/find them. Well, we waited in line and then it was my turn and guess who they pointed us to - to go pray with but of course her parents, Liz and Jim. That is the first notice from God that he knows where I am at. So, we are all praying very hard/crying after a bit the 3 of them and me. I felt a presence behind me, and then someone laid hands on me on my neck/shoulders and back/sides. I thought it was my friend Noelle and her husband, that they had seen me and then decided to come down and pray with me, (we do that to friends). Then I felt the presence leave/hands leave and I never opened my eyes as we were interceding heavily, and I remember thinking, "Well, I will never know who was laying hands on me unless they come up then and tell me about it." Later that day I asked Bethany who had been praying with us? Who was the 4th person? (not including me) that was praying for me? She asked her parents and they knew of no one else. Then they asked around to their friend who was sitting in the 2nd row right in front of us and she said, "No one." They were the only 3 praying, yet distinctly there were 4 praying with/on/about me then. There was/is/will be no denying it. Absolutely amazing. I can not tell you the feeling except to say I am feeling very loved and not forgotten. This was the second notice of the day. Simply beautiful. I still get a smile when I think of it. Well- have a fantastic day. Pray for my Lammie friends so many have it so much worse than I. I ache for them. Until next time- Blessings Go out and make a difference.

Not what any of us expected

Today I talked to my pulmonologist who finally received the results of my lung biopsy from Mayo in Arizona. Even my pulmonologist said this was not what she expected. Basically it boils down to 3 things. 1. I have LAM that is now confirmed- we pretty much already knew that. 2. I have small airway disease related to being exposed to some kind of contaminant or aspiration or being in /from Southeast Asia. 3. I have severe pulmonary vascular disease. Many of the arteries are virtually occluded by old organized thrombi/possibility embolic pathology. So what this means is LAM is the least of my concerns now and I need to go to Mayo -somewhere- and see higher level of specialist not even so much related to LAM at this point. Well, never dreamed I had all this going on inside me. I tell you the truth it is by the grace of God and nothing else that none of the clots have broken off over the years (chronic) and gone to my head and caused stroke. Some of the signs of this vascular disease are dizziness, fatigue, and shortness of breath. I have all 3. Some medicines can help this- but there is no cure. They aren't sure what is causing this as it appears not to be related in any way to LAM. Could have started in my lungs and just growing or the clots could have come from other places in my body and just inhabiting my lungs. Amazing really. Who would have guessed. The awesome Dr. from Cincinnati called me to work through the next step with me and although I am still not his patient he is currently going to get with his team up there and look at all my info and go from there. You couldn't ask for a better Dr. I do so enjoy my local pulmonologist too she too is good; I like her. So- what next? Who knows. Still trying to wrap my head around this. I had more blood tests today and probably will have more in few days. They are trying to figure out what tests I should get but will start with a VQ nuclear scan of the lungs to determine extent of damage/occlusion in the arteries in lungs. I am going to have to start taking blood thinners (a kin to rat poison oh joy ) every day. Again, still on a road I do NOT want to be on. However, the Lord is in control and he can see the other side of the mountain as I can not. He knew this was coming and is not surprised. He is right beside me and all is okay. Knowing it is impossible to please him without faith, I will remain strong and believe in his promises. It's all good. Was a little sad earlier, now I think I am just tired. Did I tell you my allergies were sooooooooooooooo bad the last 3 weeks, finally yesterday I called my PCP and he let me come in and get a Kenalog shot (steroid) to take my immune system which was going haywire. Within 1 hour of shot, I started to tell breathing was becoming easier. I had been taking OTC sinus meds every 4 hours for days and Zyrtec daily. I could tell when the 4 hours was up as I couldn't breathe, sneezing, water eyes etc. etc. Well I got 8 good hours after shot and then woke up in middle of night with same symptoms. I took some more meds today, but not as much as have been. Apparently tree pollen is off the charts, but I have been bad before they started climbing. Not fun. Glad to finally get some relief. I did get some Flonase as that always helps. Well I can't think of anything else to tell you. Think that says it all for a bit. :) Hope your day is wonderful and sunny and breathing is easy! Blessings. Proverbs 16:24 Gracious words are a honeycomb, sweet to the soul and healing to the bones.

Not going to supersize this!

In the continuing saga of the lung biopsy. I found out that Mayo in Arizona did not lose my biopsy and that they did indeed have it. I got a call after my last posting from staff that said Mayo did have my tissue and had sent a fax with results to the hospital here, and that SOMEONE lost or never received that fax :) . It's all good, it's okay, but boy was it a frustrating day last week when having to call myself around to try to get my results, when I called last week and with good customer service our people here should have called and followed up to find out why such a long delay in getting them. Regardless, it is done and over with and I SHOULD have results early next week. I am curious now, can't wait to see them. Still have a peace about things and I refuse to let that go. I like what our pastor says about something his wife is going through and I am going to claim that as my own too. They decided early on they were NOT going to "SUPERSIZE" her medical issue. I love that!!! I refuse to supersize mine. It is what it is and I am healthy and claiming that and going on with life! There was something I was going to tell you and now I can not remember... Oh well, I will remember it sooner or later. It wasn't on this but this is on my mind- do I have wisdom, I ask for it a lot- but do I have it and apply it? Psalm 49:3 My mouth will speak words of wisdom; the meditation of my heart will give you understanding. Psalm 49:2-4 This is one of many scriptures on wisdom. I am needing wisdom in many areas, wait,- all areas of my life. I especially want to make sure that I am giving godly advice out when called on or led. I do not want to go through life or find later I was not in accordance with the word of God. Pray for me if you will. I put these on here mainly for me, but thought maybe you could profit from them also. Proverbs 1:7 The fear of the Lord is the beginning of knowledge, but fools despise wisdom and instruction. Proverbs 1:6-8 Proverbs 14:8 The wisdom of the prudent is to give thought to their ways, but the folly of fools is deception. Proverbs 14:7-9 I got brave online and sent a msg to someone whose song inspires me and why, asked if they wanted to be a spokesperson for LAM- that's great- and I found my face was red as if I was embarrassed to meet someone face to face or shy or something. It was funny. Then I realized- wow I have no authorization to initiate that request.. Whoops.. so far no reply. I found it funny I was so brave all of the sudden. Hsving fun in this journey called life. Hug your neighbor or someone you cross paths with - too little human touch and a big hurting world.. Get out of your comfort zone and make a difference. Blessings.

Are you kidding me????

Oh my, what a day... I tell you the truth.. It has been 3 weeks now and still waiting on the final results.. They were sent out to Mayo in Arizona and guess what??????? True to form with this adventure-- they have never received them. I tell you- if I didn't follow up on anything seems like nothing would get done. It is hilarious, absolutely unbelievable. God has a sense of humor for sure, because one must laugh at it!!! Nothing new going on here, just looking for an answer. Still hoping for the best reports which would be nothing found! Woot Woot! Seasonal tree allergies are kicking in (we live close to a Tree City USA award city) so I am really suffering.. Zyrtec worked for about 1 week in early stages and now I am taking that and every 4 hours 2 sinus pills for sneezing/watery/itchy eyes, etc etc... Makes the work of breathing harder but nothing like some of my dear friends who have LAM worse. Pray for them please. Thanks.. Enjoy the beautiful longer days of Spring where things are made anew! Till another day-

I'm alive

Hello! I have missed writing and talking with/to you. I have debated what to type here and how often to post. I can't decide whether to keep this strictly related to the LAM issue or also talk about other subjects dear to my heart. I imagine it will be a mix of both. Hope you enjoy it regardless. Some things I find funny/ironic/strange, well one thing anyway. The look people give you when they see you. I suppose I do the same thing to others when I am in their shoes, but hadn't really thought about it until I am on the receiving end. I may have talked about this before, but it hit me today. People I see more often, just love on me, hug me and laugh and joke with me like always, but those I do not see that much, and who know what is going on healthwise with me, look at me and get an awkward look, a sad look. Sometimes a look like they wish they could change things for me but can't. Please understand I probably do the same thing, so I am not condemning them, it's just something I noticed, as when you get a new vehicle and suddenly "everyone" seems to be driving the same kind/color etc. It is just what happens. Your scope of life changes and suddenly you are more aware of certain things. A Dr. I know walked by me today, waved bye, then in the next second, she forlornly looked at me. I saw it and I do not know in that instant who felt the most sad for the other, she for me or me for her. :) I ached that she ached for me? Is that weird? It's okay, I fully understand, just not used to it. What I want to say is "Look at me like I am alive! I am! I want to live like I am alive!" I hadn't thought about my situation for a while until I saw her look. And really, it is okay. I know she cares, and probably prays for me, or at least thinks of me and wishes me the best. I am grateful; just talking out loud. I think what it is, -is this, when I look at myself in the mirror, I do not see someone with a disease, I just see me- (actually I see someone older than me- I often don't recognize that person ha ha). Then being the over-analyzer I am, I wonder if others feel this way too- or if it is just me. I have decided however to try to not give that sad look to others I know who are going through things, just to hug on them, love them and show them through words or otherwise how alive they really are! **On another note, I hate goodbyes. I am not good at them at all. I get very attached to people and don't do well when they leave, (meaning I am sad and want them to stay). I love people and want them to stay around. God though puts people in our path for a season and when it's time for me to go or them to go, it is hard. I do not suppose it will ever get easy. Too many people lately have been leaving, in one way or another lately. It is not fun. I wish them all the best. Until next time, be happy, healthy and safe.

Same ol'

I suppose one might be shocked I still have no answer yet. I am not. It's become just another day. I really do not think about things too much anymore. It's become old news to me and I just have too much I have to get done and not enough time. Not enough time for all the normal reasons not LAM or lung related issues. I feel too busy lately. I do not like it. For instance, remember that gal I asked you to pray for M.- Well, I came in to work and found a notice that she had passed away. It really took me by surprise and I was deeply saddened. She was the one who encouraged me and told me to stop being so strong all the time :) Amazing how someone can size you up in such a short time and leave a lasting effect on you too. I would really like to attend her funeral. I not only have to work back-to-back but in between have a child's function that I must be there to help with. I'd like to write the family a letter and let them know how much she did for me, as I am sure they have no clue. She also knew the Lord, so I know I will see her again and then I can tell her face to face how much an impact she had on me. Right arm is starting to heal! I went down for prayer 3 weeks in a row and I know quite a few people are lifting me up for healing! Thanks for praying for me. Until next time, have a fabulous sunny week.

Unanswered questions

Morning, I hope you are doing well. Spring is a bit delayed but the hope and anticipation of it rings loud within my heart. Loving the warm sunshine that appears in an ever increasing fashion lately. A touch of cold coming again but the end of the week already looks promising. Back to work, right arm still messed up. I can use it but my goodness, sometimes it gets so horribly painful, still like it is ripping/ripped from within. I can't get it comfortable a decent amount of time. Sometimes I just want to hold it tight against my body so it doesn't move or bounce, as if I could stabilize it somehow. Still praying God heals it and that nothing further is required to do with it. I do need it- it's my right arm and I am not ambidextrous. :) Still waiting to find out what the results are of the lung biopsy. They were being sent to Mayo in Arizona and I should know in approximately a week. We still do not know what it is. 1 of 2 diseases; is it a typo or do I have something instead of what we initially thought it was? I do have a peace about it though. I am going to keep it there, no need to pull it back over to worry and fear. I found I do not have time for that anymore. I find that funny too. I'll let you know soon what the diagnosis is. Stay safe.

The latest

Hello! I am recovering from a surgery I never want again. Worst thing is to have the chest tube inside you. Anyway, more on that later. Just wanted to touch base and say at first the diagnosis came back LAM. But then after looking the spelling I saw the spelled it Lymphangiomyomatosis, which is different from LAM- LymphangioLEIOmyomatosis. I called and confirmed this with the LAM foundation. They are indeed 2 different diseases. So which one do I have. They even sent it off to this Anna person in NY who reportedly known for her strong ability in pathology. They were also to send it to MAYO clinic, which I found out later they did not. It is now on it's way to MAYO to be tested. I would like to know what disease I really have, is this just a typo by someone who thought the words were interchangeable or do I have a different disease? Is this such a rare disease that even those skilled in medical area do not realize the difference or catch the spelling? So, we will wait another week. I hope to have results by then. My right arm is still messed up. It feels like it is ripped/ripping from the upper tricep ligament. I am able to use it more. So here we are. Spring is on it's way is it not? I love the sunshine, the birds, the sound of childrens' laughter outdoors! Enjoy it. Till next time.

Surgery

Hi, Been a while since I have been on here. Had surgery in January. Needless to say was everything I unfortunately feared and much of the reason I so strongly fought against it. Recovering now, think my right shoulder/upper arm has a pinched nerve now as the upper arm is still numb including the armpit. It feels as if a massive quantity of lidocaine was administered and someone forgot to turn the pump off! I would have thought if it were just an irritated nerve it would have subsided, but it is still numb. Very painful in the parts around the numb part as a mix of ice/heat are there when you touch it. I have limited movement which is getting frustrated. I wake up every night with throbbing and intense loud ache. I do also have surgery related pain in front right chest and my lower right rib. I also have 4 holes in my back/right side which are healing well and causing no problem other than some mild itching. As usual, I am impatient and ready to get out in the world and start living again. I do believe the Lord is trying to teach me to slow down and heal and take what he gives me one day at a time but it has proved a little harder than I imagined. Having a lot of fun with the children now that I am starting to feel better and able to help them with their schoolwork more. I am very proud of the way they have stepped up and helped me around the house with chores and added responsiblities now that I can not even lift more than 5 pounds. I see the Dr this coming Monday and will be interested to see what he has to say not only about my returning to work, but also about my right arm!, which was not like this before surgery! And also results. I am excited to see what the report of man is and I know fully report I will believe the report of the Lord. I can't wait to share what happens next in my life. I feel as if my life is not my own, and I am just watching it. Oh wait- MY LIFE IS NOT MY OWN :) It is God's. I am however playing quite a part of it. Hoping I am learning and passing the tests that He is giving me. I hope you have been well. I pray you have as many beautiful friends and family as I have been blessed with. God sure is showing me that during this time of trial and adventure. I have probably never felt so loved. And you know recently I had asked him that, to show me (I must be from Missouri) just how much he loved me, that I would really know. And true to form, my gracious Lord, wow how he showed himself faithful. (brings tears to my eyes). *Well blessings to you, and hoping you are happy, healthy and safe. Remember to pray for those who may not be, as there are many in this world. Reach out to your neighbor and to someone who you struggle with as we remember how easy it is to be kind to someone we love, yet the difference lies in how we treat those who we struggle with. Much love

Here we go.

Hope you have been doing well! This has certainly been a very busy time for us. It is supposed to be sunny and 55 today. I'll take it! Helps brighten the day for sure! I still have stitches in my mouth from the salivary gland biopsy which came out inconclusive. You ask what that means? Means the Dr in Cinncinnati said I need to get the VATS (Video Assisted Thoracic Surgery) for a lung biopsy to definitively diagnose. I will get that soon enough. Not looking forward to it is an understatement. I feel as if, well inside I am still kicking and screaming to not go and do this. There are many reasons to do this. One is I need to know what this is. Most of the doctors still feel it is LAM. I don't know what I feel like it is. I'd like to say I don't care, but that would be a lie. I would like to know. I would like some "closure" or at least an answer so I know what to expect. I tell you some days I feel like a high school girl with emotions going up and down often within the same day. I am ready for a break from my own mind :) I was telling a co-worker how it is strange that a person can encourage others but then why is it so hard to encourage yourself? I realize from talking to others that many people struggle with this, not just myself. But the question is why? What within ourselves does this? On another subject, I went to a funeral this past week. Wow, what a celebration of this woman's life. I never met her, but I left feeling as if I had so missed out by not knowing her. I was so touched by the legacy she left. How she honored and brought the glory to God, whether intentionally or unintentionally. I can't wait to see how her girls follow in her footsteps. Can you tell my mind is racing. I want to share these thoughts with you. I am not on the computer much anymore, so when I am I want to share with you everything that has been going on. I want you to pray for a dear woman named on here as M. She, bless her heart, encouraged me in the midst of her troubling disease. We have talked and have shared what is going on in our lives. I really did not think she remembered talking or me, but she saw me again and came up and asked how I was doing, so I told her I had to have surgery and wasn't feeling very spiffy about it. She looked at me and told me that I needed to learn how to not be so strong (the gist), that I had to learn to receive. She said she was sending prayers up and then she asked if she could hug me, and of course I said yes! Wow! I can't tell you how her words keep coming to mind. I was sharing that with my daughter and she said in full teenage verbage, "DUH, Mom. You are so independent, you think you have to do everything by yourself. You make it clear to others that you don't need them." OUCH! It broke my heart. I hadn't truly thought of it that way. I was raised to be strong and self-sufficient, even stoic. Not sure that is the attitude of Christ though is it?? A lot to be said for being strong but I guess not when it pushes others away. Out of the mouths of aquaintances' and babes. The funny thing is this is probably the 3rd or 4th confirmation regarding this subject and me. Guess is it a lesson that the Lord is obviously wanting me to learn. Gee, if I had already learned this - would I have to go through this :) Silly me, always trying to get out of something I don't want to do- one way or another. A friend has organized many friends to bless us during this time of surgery and recovering by bringing meals and other "assignments." She won't tell me what "other assignments are. I am just amazed and humbled at my wonderful friends and how they reflect the glory and love of the Lord. ******* So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 49:9-11 Talk to you soon.

More tests

Greetings, I hope you are doing well. This past week has been a trying time. We had to put our oldest husky down, he was pretty sick. Broke my heart needless to say. That is never easy. Every time we have to do that I say no more dogs. He was a sweet boy. He is sorely missed around the house, even the other dogs seem to be subdued, not as playful. On the medical front, I had a salivary gland biopsy done Tuesday night. I say night- it was about 1700 (5pm). The oral surgeon and his team stayed late at the office for me to get it done in hopes we would get the results back before I meet with the thoracic surgeon next week to schedule a lung biopsy date. This test it to help rule out or in, Sjogren's. They cut in the bottom of your front lip below the gumline to snatch 5 salivary glands out. Problem was, he couldn't find any. He said he had never seen anyone that didn't have any. He finally found 1 small one. He needed the 5 to get a good sample, so he apologized and continued to cut farther across my mouth and then had to even go deeper because he still could not find anything. He finally found 4 more that he needed. 4/5 were considered very small, only 1 was normal size. Not sure what this means. He did say in his experience those with Sjogren's had smaller ones, but never had he seen someone who just didn't have many at all! Kind of weird. Guess we'll find out what that means. I hope to have results by midweek before the meeting with the surgeon. Needless to say I am very sore and don't talk very well as I have many stitches in the bottom of my mouth. Fun, fun! NOT! At least I feel as if I am making progress, one test at a time. Still hoping it's all nothing. I have a lot of people praying for me I guess! I am glad, thank you if you are! I definitely feel carried by them. To God be the glory! I keep thinking what a testimony I must be building.

Short post

Hey there, Been reading a lot about Sjogren's and lung disease. Doesn't sound like something I want. Makes the LAM sound a lot better. Today has been a bad breathing day. Not sure what is up on this but it's getting me frustrated. Feel like I need some oxygen. Still no word from either Dr. I didn't call the carrier that took the MRI disk to Cinc Ohio as I had so many other things to do today. Thinking we are going to have to put one of our huskies down soon. Not a good deal. Pray for us please. Thanks. Till next time. God is faithful all the time.

Toothless

Hey there, hope you are doing well. I have to laugh at the title of my post- because today I am! I also have to go in to work for the next couple of days in this shape. My husband says I am vain, I guess I didn't think I really was, but I do find myself dreading this and will be talking with my hand over my mouth most of the time and hoping my co-workers don't make me laugh/smile. It's close to the front or it wouldn't be a big deal. I am now beginning to wonder if the Dr. in Cinc Ohio is right, maybe this is Shogrens and not LAM. Although I do not have any of the main symptoms bad teeth and lung cysts can happen. This tooth has never caused me pain and apparently degraded from the inside out and kept breaking off. We were trying to save fixing it until the new year when my insurance for the year kicks in but we were too late. Last night BRUSHING MY TEETH, I accidently bumped it and it shattered completely down to the baseline of the gum.. Crazy!! Made me angry to say the least. I like my teeth I'd like to keep them. I am going to get an implant and they couldn't get the temporary tooth to cover it in time until Monday. This is embarrassing. I am being humbled for sure. So if you see me- please do not make me smile :) . *I have no new news. My Dr. in Cinc Ohio still has not received my MRI disk I found out. Which means the carrier I sent it on is going to pay me back. So I know nothing. The surgeon never called me to schedule and since I am in no hurry now I have not called him. So I wait. I have been working out on the treadmill all week and watching mostly what I eat, (now I can only really eat soft foods). I have even been doing pushups and attempted situps :) I can not believe how 1. out of shape I let myself get and 2. how inflexible I am. Stretching hurts! But here we go. *Breathing junk this week but is all good, I am moving forward no matter what! I do feel like I am in limbo land though as right now I guess I do not know what I have. This tooth thing has taken up quite a bit of my flex pay at work so now trying to figure out how to pay for the deductible and co-pay etc. etc. However, this being said God is good, he knows where I am at. He knows what the future holds. He loves you too and knows what wonderful plans he has for you. We have still been cleaning the house albeit not near as in a frenzy as in last week, but still cleaning, expecting something good. I'll keep you posted. Let me know how you and your family are. Until next time, remember "I can do all things through Christ who strengthens me." and "Rejoice in the Lord always. I will say it again: Rejoice! 5 Let your gentleness be evident to all. The Lord is near. 6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians.

Peacefulness

Good morning. It has been snowing this morning, absolutely beautiful, sparkling, blowing white snow. A winter wonderland. Quietness and peacefulness abound outside. I do not enjoy winter, I'd rather be at the beach, but for now the breathlessness of God's beauty when it comes to frozen precipitation, is indeed appreciated. *Nothing really is new, I sent both MRI's off to Barnes and Cincinnati Ohio. Awaiting comments from either/both parties. I may be getting a salivary gland biopsy. That does seem fun, sounds like it hurts. At least it's not as invasive or troubling as the lung biopsy. I am beginning to wonder if this isn't something else other than what the Dr's have been thinking. In a good way, not a bad way. I think it may be because so far everything has been inconclusive, other than the positive CT for LAM. So, I remain hopeful. **Worked out, by that I mean, on the treadmill for 20-23 minutes. Felt good. More energy today. Chest pain minimal. I haven't had too much air hunger lately, just the big sighs every now and then trying to get big breath, but nothing like the previous week when I couldn't get to sleep because of the shortness of breath, chest pain and air hunger. Some people say the cold weather bothers them, I haven't noticed a difference with it, but then I don't know what to compare it to either, this is all still only four months into this, not even quite four. **We got in a cleaning frenzy at our house this past week. My daughter stated she felt like it was spring cleaning just way before spring. Similar to the nesting experience when pregnant and getting ready for the new arrival, I feel as if we are going to be expecting something soon; strange. I have good expectations and can't wait to see what the Lord is going to bring us. (No, I am not pregnant) There must be some reason why we are deep cleaning the house, and surely for some other reason than it was well overdue. Have a wonderful day and stay safe. Check on a neighbor. ...the Lord turn his face toward you and give you peace. Numbers 6:25-27. NIV