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!