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