I'm back

Hey all, Forgetting your password is not fun. I finally figured it out! Thankful that not too much has changed for me. I wear oxygen at night, get short of breath, have a dry random cough sometimes, and get pleuritic chest pain. All is well. I have no complaints. Started working out 3 days ago to the TV. A couple of back to back PBS stretching/work out shows and can I feel the difference. I have missed them the last couple of days due to work schedule but will get back on it promptly this week. I do believe my back has been feeling better. Can't talk long. Just wanted to say hi and to look for more in the future. Remembering to be thankful for family and friends. Deb

Lymphangioleiomyomatosis - A new lease on life maybe?

As you know I am now on oxygen at night and when I lay down. I felt better the first few days on it, but then the lovely monthly cycle hit and I have been of course short of breath, extremely fatigued and just in general do not feel well. My daughter noticed how short of breath I was. Hoping for a better week. I do feel I wake up better since the onset of oxygen. I only am groggy for a little bit and then I seem to perk up better. Not sure it lasts as long as I'd like but it's a start. I also feel I have more brain power, if that makes sense. I think I am beginning to think a tad bit more clearly. Told the kids don't think I can get any of the lost brain cells back from being so short of oxygen for who knows how many years but as I said before- it's a start. I am hoping I will get more focused. I did notice that I had been stepping out of living life the last couple/few years and couldn't explain it. I just felt it was because of all the stress with the child molester issue and adoption and change of location and diagnosis etc. but looking back I think it started before then. I just felt less and less involved in life, in daily activities and everything basically. I was checking out of life, or something was checking me out of it. Hard to explain. I wonder if it was just the lack of oxygen. Boy, soooooo many times I remember telling my husband, "I just feel like my brain is not getting enough oxygen." And wow- I was right. I know my body best. Scary :) Hoping to check back into life. To start caring again, or better yet to have the energy to start caring again. To be motivated in everything I do. So again bittersweet emotions here, grieving my old life of being able to fall on the couch and take a nap with out being hooked to an oxygen concentrator-- I did that today and paid the price with horrendous headache and no energy, but being excited about a new start and a new energy for life. Thank you Lord for knowing what I need when I need it. Hope you have a blessed week and the energy to go out and make a difference in someone's life. I saw something on TV I think it was tonight or fb not sure, but I can not give credit to the person who said it because it blinked off before I had time to read the name fully-- but it said basically -- Do not mistake my kindness for weakness. I really like that.. I think a lot of people do not realize that about me.

In chains -

Have you ever been in the middle of something and can't seem to see to the outside of it what is really going on? I think that is where I am at. Sometimes I wish I could see, I don't know I guess the big picture of my life. I think I am losing/lost that in the middle of living? Does that make sense? I might have brushed on this topic before, maybe I am back here again then, because this is where I am at. And not even an, "It's a wonderful life thing."- just how everything fits together. Maybe I am getting antsy and just want to see how the Lord has moved and how our lives our so intertwined together. I was thinking the other day I wondered who prayed for me when I was younger, in my 20's and early 30's before I got saved. Someone's prayers had kept me safe, delivered me from evil mainly times. I'd like to thank them. Meet them if I don't/didn't already know them. And then deeper thoughts like what if no one prays for a certain someone. Has every person had at least one person pray for them in their lifetime? (this is how my brain works) Some of those questions are answered in the bible- which is why we must go out and spread the gospel, but I think these questions just the same. On another note= I was working the other day and someone said "Home health care." Those words, those simple words really took me back. Strange how something so easy and simple and helpful to people could make me cringe- indeed if any of you knew it- I was fighting back a couple tears. It just caught me by surprise and truth be known I think I suddenly resented being where I am at. Which usually I am not- but I did dip down into pity party for a minute- I guess that's what it was. Just a realization that things aren't going to be where they were before. That now I am hooked to something, chained in a way to oxygen, although being chained to it is actually helping me. Kind of like Jesus- the parallel- always the parallel.. Teach your kids when they are young to learn parallels and patterns because they will need that learning to see the parallels and patterns that the Lord has graciously shown us in this life. Getting back to the parallel. Being chained-- to Jesus as if that may feel some days like a bad, or hard thing or too much of a burden to bear- too much of a sacrifice. And yet- you/me/we need him, need to be chained to him to even exist-- to breathe. I should write a book on parallels and patterns. I kid you not, I see them all the time, I am sure you do too. If you are looking and thinking of him and his ways and the blessings and messages he sends. It's quite fun actually, like putting together a puzzle. Love it! Hope this small note encouraged you- I know I got encouraged myself just talking about Jesus and his patterns he sends to us! Have a blessed day. Isaiah 40:31 ...but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

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.