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