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.