tag:blogger.com,1999:blog-42930456774816873672023-06-15T15:16:53.482-05:00Dysautonomia: My Journey, My Battle, My Victory, My LifeMirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.comBlogger104125tag:blogger.com,1999:blog-4293045677481687367.post-51727937429349586902016-05-20T09:16:00.002-05:002016-05-20T09:16:51.845-05:00Thankful for my health.It's been quite some time since I ventured over here and made a post. Honestly, life has been more than hectic and busier than you could imagine! As for me, I am doing fairly well! I haven't had a bad syncope episode in a long time now, although I do occasionally have brief blackouts but they are far between. I am able to drive now since my symptoms have subsided so much. I still have to rest my body a LOT in order to keep symptoms under control. I still try and keep my stress levels as low a I can but with 3 kid who face health issues of late that has proven harder and harder. I find myself losing sleep with my thoughts going everywhere. It's the quiet of the night that gets to me. Those moments when I am too tired to watch tv or do anything else, but as soon as I roll over to sleep my mind seems to wake up and all the what-ifs and such become overwhelming. For the last 6 1/2 years my middle child has had GI issues. Her diagnosis, which isn't even really a diagnosis just stating the problem, is chronic constipation or obstipation. The last 2 1/2 years have been very hard. She had surgery last June for a biopsy of her colon and then another surgery in November to place a Mic-Key button in her colon, a cecostomy. She has had multiple hospital admissions, trips to the hospital for X-Rays, to see her specialists, her surgeons, etc. Then she began having anxiety that was through the roof and so we started seeing someone for that along with depression because her cecostomy has not worked like the GI thought it would work. She has had to switch from a regular GI to a colorectal clinic so that she sees a specialist GI and Surgeon each visit and it allows us to have direct contact with them regarding all issues. We are brand new on that end of things but it seems to be a better fit. We get much more information on how to make this cecostomy work for her instead of against her. In less than 2 weeks time she and I will make the trip to Atlanta for her to be admitted and have a full colonic motility study. We are praying this gives us answers as to what is the cause of the constipation that has been a grueling battle for our sweet little girl. My oldest daughter spent much of last year in weekly physical therapy. She had an issue arise with her muscles and joints in her legs. Her muscles on the front were extremely weak while the muscles on the back were overly tight. She couldn't walk with her foot flat, instead it would roll a bit, causing all kinds of problems. She now wears an orthotic insert in her shoes that help raise her arch to keep that from happening. She was also diagnosed with selective mutism and severe social anxiety. I knew she was shy, but it had gotten really bad so I sought help. She is doing much better in regards to being able to speak again! She wa getting weakly therapy and daily meds to help with this. As we have gotten this under control she's diagnosed with ADHD. So we started meds for that and this week I noticed that perhaps they are working! She was much more focused and able to retain her math facts unlike ever before! We homeschool and I had tried everything! Perhaps all along she needed something for ADHD but since I had nothing to compare her to I just didn't know. And now my little one, my 2 year old, has had a rash come up for the last month now. He's seen his pediatricians at least 5 times in the last month. We were told one thing in the beginning and treated for that. It didn't help. He tested positive for strep the second week so we were told maybe it was a strep rash. Tried oral steroids that mildly helped. Ended up back at peds and it they decided that it wasn't strep but likely an allergy. Finally he was referred to an allergist because it got so bad. She wasn't 100% sure of what it was either. He only tested positive to be allergic to grass. She felt maybe it was an eczema rash that just went wild. So we came home with a plan. For a week and a half I saw improvement and then it started just coming back. We know it wasn't something in the home because we were on our 3rd day of vacationing when it came back so entirely new environment. So back to the allergist for the blood work she suggested. In the meantime he had to go back to the pediatrician because of pain in his privates. Two ped trips regarding that and a trip to the hospital for an ultrasound that came back clear, and the pediatrician thought maybe related to the rash. The allergist didn't think so but conferred with the head of pediatric urology and he wants him to be referred to him. Bladder spasms or constipation seems the likely culprit. I really hope it isn't constipation as we have already had a near 7 year battle of that with my daughter and I know how bad it can get. Oh and he also had a dental surgery about a month after my daughters surgery and we learned he had reflux causing dental decay! Never even thought he might have it! <br />
Needless to say it sometimes feels like a nursing home around here! There are meds to give in the morning, meds to prep and give in the afternoon, and meds before bedtime. Each week typically holds at least 3 appointments that require about a 20-30 minute drive one way. Two of the locations are between 30 and 45 minutes one way. And they are all interstate travel so if there is a wreck, well just be prepared to wait or learn your way around things! <br />
I'm not complaining at all though. I say all this to say how blessed I am. Four years ago I could barely do anything! I had my son, August will be 3 years, and it's almost like my body got better in most respects. I can even play piano again! Like I said, I still have symptoms of dysautonomia but they are mild most of the time and I am able to manage without meds! Lots of hydration and lots of rest when I can find it. I am blessed that I am well enough to take care of my children's needs! Every day I thank God for them and for helping me be well enough to be the mom, taxi driver, cook, nurse, teacher, and friend they need me to be. They are my inspiration to want to be better, do better, and live better!<br />
If you are a believer in prayer and know that God is our healer, please remember my children in your prayers! They are fantastic kids and have all had quite a rough go of it in the last couple years and then some. Between the three of them we have had 7 surgeries in about 5 years time. More specialists and Dr visits than I can even count. More hospitalizations than I can remember. Xrays, tests, blood work, medication trials, etc and the list just keeps growing. But God is faithful and He has supplied ALL my needs! He has directed our paths to great and caring Dr's. that go above and beyond to help my kids! He has given me strength and health so that I can be well enough to take care of my children. And I know He can provide complete healing and restoration to their little bodies! I am still trusting and believing! Thanks for reading. Thanks for praying for my family. Have a blessed and wonderful day!Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com0tag:blogger.com,1999:blog-4293045677481687367.post-36104098465613820872015-01-09T22:02:00.000-06:002015-01-09T22:02:08.705-06:00It's the Flu ....and Swag Bucks... lolWell we are about to close out day 6 of having sick kids... with Flu B. So far all three kids have it. Our oldest is 10 and she's the first to have it so she's about over it now. Yesterday our youngest two, 7 and 1, were diagnosed so we are looking at around another week of this stuff. I'm thankful though that for the most part the kids are doing well. We've had some scary high fevers, and a couple of vomit filled moments, along with coughing, sniffing, sneezing, etc but the kids are doing as well as we could expect. We're really worried that if I get it I'll be in a world of hurt because that's the way things usually do me, but so far I'm hanging in there without having a symptom. Exhausted and brain fried, but so far flu free. :) <br />
So since we arent doing homeschool while they are sick I've had a little, and I mean LITTLE, downtime and I've used it with my feet propped up and chatting in a facebook group with a great group of ladies. I had participated in Swag Bucks in the past, you can check it out and join <a href="http://www.swagbucks.com/refer/emsapowell">here</a>, and had quit but decided to give it a go again just to earn some extra spending cash for myself. I'm SO glad I did. I won't get rich but I'm able to cash out for a paypal credit every week. Plus I've won a couple of sweepstakes I entered as part of the point gaining on swagbucks. So that was just a bonus. Anyway, this group of ladies have introduced me to quite a few "freebie" sites so I've been enjoying that while I'm resting on the tad bit of downtime I've had.<br />
Just for fun I've set a goal for myself to stick with all of this until the end of the year and keep a tally of all that I get for free. I plan on making a facebook album so that I can keep track of everything. As a stay at home mom who can't work due to dysautonomia it's a welcome nicety to get free things in the mail from time to time and I hope to increase the frequency in which I get things this year.<br />
It's nice to have something fun and engaging to do when I'm stuck resting other than netflix! So I'm really looking forward to sharing with you all a little hobby that I think I'm gonna enjoy! Like I said, I won't get rich, but it's nice to have my "own" pocket cash for a change. Those of you who can't work should completely understand the feeling of not earning your own money! For me it's great to even be getting the $25 a week on swagbucks that I average right now. So if you're interested in getting started click above or just click <a href="http://www.swagbucks.com/refer/emsapowell">HERE!</a> You have nothing to lose and free gift cards or cash if you choose to gain. It's just something to do that gets my mind off the feeling bad, gets me involved with other ladies who aren't always talking about the disease who also have a like interest like I do... free stuff! lol Anyway, I hope you all have a great first of this year, 2015. We're spending it neck deep in the flu virus and earning freebies while recuperating and taking care of my children! :) Have a great day and God Bless!Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com0tag:blogger.com,1999:blog-4293045677481687367.post-74637605150599217502014-11-11T21:28:00.001-06:002014-11-11T21:28:25.826-06:00A rough couple weeks...and my apologiesHi everyone. I know there are a few of you who have contacted me about doing specific cause worthy blogs for awareness for different things. I apologize for not being able to get those done in a timely manner. I have had a rough couple weeks and am just now seeming to come out of the fog. My thinking process is still slow at times and I still am stammering at times just trying to get my thoughts vocalized but I'm getting back to "my normal" finally I think. This crazy weather isn't doing me any favors. A girl who goes to my church has also been dealing with the weather affecting her POTS also. So maybe once the weather decides it's just gonna be cold or just gonna be hot, maybe that will help with some of the flare ups of symptoms. Anyway, I am not able to put down much more than this tonight. Still not where I want to be as far as thinking processes go. But hopefully I'll be able to get those blog topics researched a bit and written about soon. Again, I apologize for the delays but that's just how it goes with Dys/POTS sometimes.<br />
Thanks for dropping by and reading my randomness! Until next time, have a blessed and healthy day!Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com0tag:blogger.com,1999:blog-4293045677481687367.post-30018824619402242942014-10-26T10:40:00.001-05:002014-10-26T10:40:16.227-05:00Worried...Starting to feel worried again. It's been so fantastic having this hiatus from most of my symptoms. If I could only bottle up whatever it is during pregnancy that makes my symptoms less severe, I would. Liam just turned 14 months and symptoms are creeping back in more and more. I passed out on Wednesday night. It was a brief blackout, but that doesn't mean the floor doesn't make me hurt just the same as a long blackout. For the last 3 weeks or so the brain fog has been increasing in intensity. And now it seems the insomnia is coming back on as well. I really hate this stupid stupid disease! The added stress I've had lately hasn't helped at all as stress is a HUGE factor in bringing on symptoms for me. <br />
I'm scared that I'm going to lose the freedoms I've had for the last six months. Taking my kids to their Dr. appointments has actually felt fantastic! Being able to do the grocery shopping. Driving short distances. It's all been SO NICE, but in the last two months I've actually had to let someone else drive my car and my kids home because I was unable to do so. I've had to cancel grocery trips because my stupid body just couldn't handle it. It really sucks.<br />
I try and be optimistic and upbeat about everything but this go around it's hard to face the possibility that my freedoms may be gone again. All because I have this stupid disease. And there is stupid drama going on right now that has had me not only anxious, stressed, but also depressed. I don't get depressed very often. In fact I'm rarely sad. I'm just a happy person by nature. So knowing that I'm fighting depression makes me feel weird. I'm just not used to being sad. I miss being happy all the time. A lot of people don't get how I can have had all that's happened to me and yet still be happy. I've even had Dr.'s tell me, you should be depressed a little, it's ok to admit it. But I try and tell them I just don't get sad that often, and definitely rarely feel depressed. It's just weird for me.<br />
I've typed up posts and deleted them over and over because I truly kept waiting until I was able to be upbeat or optimistic about all that's going on, but it's been a couple months of increasing signs of symptoms and I just haven't reached that "optimistic" point yet. I hope it's soon because dealing with this stupid disease sucks bad enough without feeling like this. <br />
<br />Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com0tag:blogger.com,1999:blog-4293045677481687367.post-67687368147052681712014-10-06T12:53:00.000-05:002014-10-06T12:53:10.068-05:00It's been a while...Life has been flying by so crazy fast that I didn't realize I'd not blogged in for so long! Since my last post we've had our son, he's adorable and the most beautiful boy I've ever seen. He's so smart and VERY active! Thankful for his two older sisters who do a lot of the chasing! Thanks for the prayers and well wishes, way back when!, for his safe delivery and speedy recovery for myself! My C-section went very smooth and everything was great. He had some very difficult days with his bilirubin levels but after a week we were finally home for good after a discharge and then readmitting. <br />
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As far as Dys, well it's still hanging around. But I think I've really learned how to somewhat manage the beast that is this disease. It takes a TON of patience with my body, a TON of self control, a mostly strict routine, and plenty of regular rest. Since my getting pregnant with Liam I've taken very few meds. I feel like the fact that I will need them again is an ever present fact looming closer and closer but at the moment I'm managing with VERY cautious behavior and lots of prayer and faith.<br />
I'm so very thankful that I was able to successfully nurse my son, meds free, until he self weaned at 11 months and one week! The goal was to make it to that time and I'm 2 months past that at this time so I'm very thankful and very grateful! For now I'm managing and I'll keep things the way they are unless something worsens or changes prompting the necessity of meds again.<br />
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Well that's about it for now. I never have a lot of quiet me time to write and post a blog so forgive me for the gaps in writing in advance! But thanks for stopping by and keeping up with my goings on :) Have a great day!Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com0tag:blogger.com,1999:blog-4293045677481687367.post-36773563827822102462013-07-25T14:27:00.000-05:002013-07-25T14:27:16.502-05:00Just 40 more days until we meet him!!! WOW! Time has flown it seems. Then there are days when it seems like it's dragging it's heels too, but that's not very often. I am now 33 weeks along in this 40 week journey. Although my journey is scheduled to end at 39 weeks via repeat c-section, so I have just 6 weeks left! We are all so very ready to meet this baby boy! My two girls are beyond the whole waiting and ready for him to be here already, but they are remaining much more patient than I am on some days. I have another OB appointment in less than a week and if things have remained as they've been this entire time then I don't foresee any problems. So that is great! By this point in the pregnancy with my oldest I was on strict bedrest. I think I made it a couple weeks further with my second but again I was on bedrest and both pregnancies ended in emergency c-sections. Even though I fought until the last day for a V-BAC with my second! This time I think the risk of a V-BAC would be higher due to the previous 2 c-sections but also with what I know about the disease and how my body handles stress and fatigue I think a repeat c-section is the right choice so I haven't mentioned a V-BAC to my Dr. Although my family has heard me say many times that I have a feeling that this pregnancy is going to go perfectly and it would probably be my only chance to have a vaginal birth. Bummer! But that's life!<br />
Anyway, I've experienced the big question from people finally. The "Are you getting your tubes tied?" question. People seem shocked that I'm not. After all they were thinking we were insane to be having a 3rd little one to begin with but to not tie my tubes!!! That's LUDICROUS! *smile* I have my reasons and they are my own. But for those who read my blog and have wondered if this is on the to-do list your answer is it is not! I even had a lady (mind you she is the sweetest lady and meant no harm!) ask me what was I gonna do with three!?! I smiled and replied, "Same as I did with two. Spoil and love them!" <br />
It amazes me that if this were 50-80 years ago people wouldn't have batted an eye at a 3rd baby. I wonder what has changed so much that it makes a larger family taboo. Is it that there are so many expensive extra-curriculars available today and parents feel the need to give their child everything available making it a cost issue? Is it time available to spend with children? I really wish I knew. Is it that more than 1 or 2 children just require more of everything and parents are afraid they can't meet that many children's needs? It really baffles me. I know that in today's society the "best" is often considered the best because it's the best that money can buy. I'm very blessed that I don't have that mindset I suppose. So far I've been blessed with children who have a mindset that spending time with family is better than spending money on expensive items for themselves. I've been blessed with children who at very young ages are learning the value of the dollar by earning the money they get to spend. They understand that daddy works hard for what he earns and they work hard for what they earn as well.<br />
I guess since becoming pregnant with this 3rd blessing and seeing the reactions of those surrounding us it's brought a lot of questions to the forefront of my mind. Most of which why is it so, for lack of a better term, repulsive to have larger families if that's what is great for your family? Even though we've encountered some negative and humourous feedback about us growing our family we wouldn't change a thing! We know times won't be easy but we learn every day the value of living within your means and enjoying the priceless things in life. I for one am looking forward to another child squealing with joy in the mornings and throughout the day. I'm looking forward to one more cuddler fighting for space in the mornings and just before bedtime. Life is great and is only getting better as time draws closer to our newest family member arriving!<br />
Some have wondered how I will manage a new baby with the disease I have. And my answer is that I'll manage exactly as I have with both my oldest children. With the strength I gain from God and with the love I get from my family. Working together as a family unit like we have even before we knew why mommy wasn't as active and feeling well as other mommies. This is nothing new for us and even though there have been scary times, many scary times, there have been far greater joyous moments because illness has a way of teaching a family that love and time spent together is the best things in life! <br />
So for those of you that stumble upon this blog and read it remember that even with life-altering diseases and setbacks you can have a life altered for the better! Sure you may have to adjust your view a little or adjust the way you feel about what happiness and togetherness means, but it's do-able! It's all in how you choose to view life. Find happiness in each other even in the tough times. Laugh often and loud! Give and receive love from those around you... it's a mind-altering drug that is better than any prescription! :) <br />
Have a blessed day and check back soon for an update on our newest addition! See you soon!Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com0tag:blogger.com,1999:blog-4293045677481687367.post-75246454449452348492013-05-30T12:52:00.001-05:002013-05-30T12:52:29.200-05:00My baby is a blessing...I'm lying here in bed resting, because that's what you have to do when you have a disease like Dysautonomia. Also because my OB told me yesterday that resting and hydration should help with the Braxton Hicks I've been having. Ya know, I don't believe I ever had ones that hurt with either of my pregnancies with my girls. I had the tightening sensation but that was closer to the end of my pregnancy and was more of a comfort issue than a painful one. This little boy makes being pregnant SO different! I've been having BH's that actually hurt for more than a month now. The first day kinda freaked me out because I'd never had them like that before, but now I know they are normal just not fun! :) But in either case rest is the answer along with staying very hydrated. Two things I understand well after these past four years of my diagnosis. Rest and hydration are more than important for me, the are very necessary to keep myself from having what I call "crashes". I've had a couple episodes since becoming pregnant this time around and both times were during times I wasn't resting more than I was doing. There is a fine line you have to find and balance on with this disease. Add in the extra fatigue from growing a precious tiny human and finding and balancing on that line is a new challenge! But having said all this, I am not complaining, just stating how things are as of now.<br />
My mother made a comment below a facebook photo I had taken showing my growing belly. She stated, He sure is growing. I think you enjoy your pregnancy more than anyone else. LOL. I love you." I can't argue with her statement at all, in fact this was my reply. "That's because I know how blessed I am to carry this little boy! I thought for sure I'd never be able to have another!" And it's completely true! I never thought, even though I so desperately wanted, that I'd ever have another child. We'd randomly discussed it many times over the last four years and I would say to my husband that I probably shouldn't because of the disease and all. Then one day in December of 2012 we threw caution to the back of our minds and a few weeks later learned we were having another little baby. Just one single night and this beautiful baby boy I am now carrying was created and began growing into something beautiful! My girls were beyond thrilled! My oldest had been wanting a baby brother for the longest time and my youngest had recently declared she'd like a baby sister. (She has adjusted to the idea of a baby brother now, at first she wasn't thrilled though!) In the beginning most of those close to us were very concerned. I understand that completely because I, too, had been concerned at times. But the sheer joy of knowing another blessing was on it's way pushed those concerns further into the back of my mind and they only occasionally pop up.<br />
Knowing that this broken body of mine is carrying and growing such a miracle gives me such joy. Every moment he kicks, even when they hurt, I'm so happy! When we have our appointments and hear that beautiful heart just beating away, my heart soars! The times we had ultrasounds and saw him for the first time and for the first time learned we were having a son, I can't explain the joy! For someone who is so dependent upon others for help so much of my life, this is one thing I get to do for someone else! I get to shelter him, care for him, love him, and carry him for my entire pregnancy and there is no one else who is able to do that. It's all me! Well, me and my Heavenly Father who has blessed me with knowledge enough to know how to care for my body so that I can care for my son. It is truly an amazing and wonderful feeling to know that even at this very moment my body is doing something other than failing me... it's helping support a tiny blessing that I'll soon hold in my arms and love on. A tiny blessing that I'll soon be able to introduce to the world and say, "See, here is a baby who will bring love and laughter. A baby who will soon grow into a boy who will love Jesus and share that love with others. A boy who will do amazing things and will grow into a man who will be kind and caring. A man who I will be proud to call my son as he walks and talks the ways of Christ." Some will say that I can't say those things with certainty. I say that I can. Because the Bible tells me that if I train up a child in the way he should go, that when he's older he will not depart from it. (Prov. 22:6) Just as my husband and I do with our girls, our son will learn the ways of Christ, so that when he is grown and has become a man with his own life and family, he will then pass the torch on to his children.<br />
Yes, I am very blessed. I am very happy. I am beyond thrilled to be carrying this bouncing (and he does!) baby boy. And I am privileged that I'll get to see him grow into the man he is destined to become. And at the moment, I am more than overjoyed that I get to be the one, the sole caregiver, for this baby boy. It's not often in my Dysautonomic lifestyle that I get to say that! That in itself is my miracle!<br />
Be thankful for the miracles in life and strive to recognize them when they appear! Sometimes, others may not see that situation for the miracle it is. Be sure to remind them! Be sure to give Jesus the praise when He bestows blessings and miracles upon you! Have a wonderful day and be blessed in the Lord!Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com2tag:blogger.com,1999:blog-4293045677481687367.post-1862993478488339522013-05-15T14:44:00.000-05:002013-05-15T14:44:04.299-05:00We're having a ...Well, it's now been over a months since our anatomy scan. First off the baby is doing great and growing right on track as of my last appointment. And we found that we're having a SON! Yep, it's a boy! We are very excited about his upcoming entry into this world! Here's a sneak peek of him. In this ultrasound image he is face down, head on the right, and he's got his right hand at his mouth!<br />
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Since my last post so much has changed! My dad came up twice and has done some work on our place getting us ready for our baby boy. Still have some painting that needs to be done. After our baby boy has gotten here and we are a little adjusted then my dad will be back up here and we're going to replace all the flooring in our kitchen/living/and girls bedroom. I'll be so glad when it's all non-carpet! Carpet is a disaster for someone who has a disability, 2 almost 3 small children, and pets!<br />
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As far as my dysautonomia and this pregnancy I'm doing ok. I have however already been keeping my activity to the bare minimum and now my OB has stated that getting hot is a no-no and bed rest may occur sooner than I'd anticipated. But until that moment arrives I'm still taking it very easy. My heart rate is staying elevated even with my beta blocker I was allowed to stay on and the further along I get the more it becomes an issue for me making resting even more mandatory. So far my BP is good though. I have fainted a few times but had the foresight to sit before hand so there was no injury which is great. I have my 1 hour glucose test in 2 weeks and although I'm not looking forward to it I don't anticipate any problems.<br />
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Well, please continue to keep us in your prayers as we face these last 16 weeks of this pregnancy! I have my scheduled C-section for the 4th of Sept. Before long we'll have an adorable little boy here to make life more exciting! Until next time, be blessed!Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com0tag:blogger.com,1999:blog-4293045677481687367.post-53894174424173763652013-02-20T21:07:00.002-06:002013-02-20T21:07:47.446-06:00Meet Baby Powell #3<div class="separator" style="clear: both; text-align: center;">
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<span style="text-align: start;">We had our ultrasound and our little one was measuring right on time! </span>Here is a photo from our ultrasound and for those who don't really know what you are looking at there is a photo that I diagrammed! </div>
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It is always amazing to get that first glimpse of the tiny being that God has blessed me to protect while it grows! I am constantly in awe that there is a tiny human inside me and completely dependant upon me! I am so very thankful and grateful to God for allowing me to enjoy becoming a mother for the 3rd time!<br />
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Maybe the next time I make a quick post about our newest blessing it will be to show it's next picture and maybe to let you know whether it's a little boy or a little girl! Until then...Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com2tag:blogger.com,1999:blog-4293045677481687367.post-10606886557537398002013-02-11T21:14:00.002-06:002013-02-11T21:14:38.961-06:00And then there were more...Today I have been thinking constantly on my upcoming ultrasound appointment. In fact for the last 6 days it's been constantly on my mind. Is my baby healthy? Is my baby growing properly? Will he or she have the same problems I have? Is there just one baby or more than one? Will my health hold up for the duration of this pregnancy? See, I have LOADS of questions!!! So many thoughts are running rampant through my mind that it can really wear me down if I chose to let it.<br />
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However there are so many less worrying thoughts that I can choose to focus on! Am I right and this baby is a beautiful boy? I can't wait to see my daughters faces as they meet their sibling for the first time! I can't wait to teach this new little one all about Jesus and His loving sacrifice for us! I can't wait to hold my baby, talk to him/her, sing songs to him/her! There are so many exciting things to think about!<br />
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Sometimes at night when sleep is seemingly nowhere to be found for me, I find myself lying in bed just thinking of the baby. It's such a miracle at how this tiny grouping of cells came together and day by day and week by week they merge and grow and shape into this beautiful tiny little human! I get these little updates via apps on my kindle. I didn't have these when I was carrying my two daughters! It's so neat to get little daily snippets of what's going on inside of me! Being able to quickly share these cute little updates with the girls and my husband is fun!<br />
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So having said that, I'm lying here again thinking about Monday. In seven days I get to finally see my baby! Or babies? "smile" Just as a side note, my mother in law told me she's praying every night for twins! It's possible with our family histories so we'll see! I do know that I imagine and feel like this baby is a beautiful little boy. I was right with my girls down to their hair/eye color as well as their hair texture! Will I be correct again? Will this baby be a sweet faced little boy with light eyes and wavy strawberry blonde hair? Or am I just so off in my "gut feelings" this time and this baby will look nothing like I see him in my mind? So many questions and wondering this or that. I suppose all that I know for certain is that no matter what this baby is already so loved! This baby is constantly on my mind and heart and I pray for him/her daily. I wait for the day when there is more than a flutter of movement that is barely perceived by myself. I wait for the moment when my family can see and feel their baby moving within me! I look forward to the moment when I hear that first cry, have my first glimpse of my beautiful gift from God, hold him/her, nurse him/her, and just love on that which is just pure sweetness! 40 weeks, and I have 10 of those under my belt (quite literally!). We are 1/4 of the way through this beautiful journey and I can't wait to see the finish line that signals the beginning of the rest of our lives as a family of more than four!<br />
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<br />Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com0tag:blogger.com,1999:blog-4293045677481687367.post-652634284352973412012-12-10T10:44:00.002-06:002012-12-10T10:44:57.450-06:002 weeks till Christmas EveToday marks 2 weeks until Christmas Eve 2012! My kids are VERY excited. They love all holidays and really get all in to every detail. I am so blessed to have the family I have! This isn't going to be a typical blog from me, it is going to be short... very short! I basically just wanted to take a spare minute and say Merry Christmas to everyone who drops by my little place on the web! I pray you are blessed this Christmas season and are able to be a blessing to others around you! May you have good health and enjoy this time we set aside to celebrate the birth of our Christ. May you enjoy fellowship with family and friends. Be joyful and spread good cheer and show the love of Christ through your actions! Have a wonderful Christmas and God Bless!!!<br />
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<span style="font-family: Trebuchet MS, sans-serif; font-size: large;">Merry Christmas from my family to yours!</span></div>
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<a href="http://www.sodahead.com/fun/beloved-friends-i-wish-you--all-sodaheaders--a-very-merry-christmas-its-maybe-our-last/question-3370117/?link=ibaf&imgurl=http://www.ignitermedia.com/sitecontent/media4/images/main/s/lo/img/tgr/CHR.lo.NativityMerryChristmas.main.jpg&q="><img height="225" src="http://www.ignitermedia.com/sitecontent/media4/images/main/s/lo/img/tgr/CHR.lo.NativityMerryChristmas.main.jpg" width="400" /><br /> pics on Sodahead</a>Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com1tag:blogger.com,1999:blog-4293045677481687367.post-57483533452142293112012-10-05T22:35:00.001-05:002012-10-05T22:35:57.853-05:00Miranda's Stitches 4 You!!! Hey everyone! This is going to be a super short post because it's late and I'm tired...lol I just wanted to share my handmade items for sale! I am crocheting, knitting, and more to make money to help contribute to my medical bills. We all know how costly they can be with our disease and all it's quirks, and I just want to be able to do something to help my family. Soooo, having said that if you would like to view the items I have made and am selling you can go to <a href="http://www.facebook.com/MirandasStitches4You">Miranda's Stitches 4 You on facebook</a> and I update it with all the items I have made. I can also make each item in the color YOU want! All the details are there and if you are interested just send me a message or<a href="mailto:MirandasStitches4You@mail.com"> email me</a>! It's that simple! And remember, I typically add new items no less than every third day or so. Sometimes multiple items per day! So check in frequently! Thanks again for dropping by my site and if you check out Miranda's Stitches 4 You then I'll say thanks in advance for that! God Bless! Have a great day!!!Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com0tag:blogger.com,1999:blog-4293045677481687367.post-81883361205863401592012-08-08T15:50:00.002-05:002012-08-08T15:50:39.926-05:00Back to the school routine... my body is struggling to adjust Hi everyone! While the kids are working on their homeschool work I decided I'd check in and see how my viewers are doing. I know most of you have Dys./POTS or other chronic diseases and really I would like to know how you are doing so feel free to leave a comment!<br />
So we are in our fourth week of homeschooling for the 2012-2013 school year. The children are doing fabulous so far. I am very proud of them and the progress they have made! The youngest is starting her kindergarten year and my oldest is starting her third grade year.<br />
At the rate we are going so far, they should be on track to finish school 6 weeks ahead of the local county schools! They are very excited about that and are already talking about where they want to vacation once they are finished! And as for us finishing 6 weeks early, well we started 6 weeks before the public schools here did. That's a great thing about homeschooling!<br />
So how am I managing? Sleeping a LOT. Pacing myself. Not overdoing it. Resting with my feet up while they are doing work that I'm not needed for. Just basically listening to my body and doing my best to do what it needs me to do. We rearranged our school area and that gives us better organization as well as allowing me to rest on the sofa while at the same time being within reach of their work areas. It works out well. Much better than years past.<br />
I will be going to my specialist sometime this month, closer towards the end of it. I'm thinking we may need to adjust something in my meds. Having dizzy spells and short blackouts more frequently with little to no warning at times. This happens though and I'm blessed to have a specialist who will listen to what I say and work with me to get my meds to work for me the best we can.<br />
Well, that's what has been going on in our little part of the world. Be in prayer with us as I should be having my appeals for my disability filing by end of September. We really need this to work in our favor. God knows I would be out working a full time or even a part time job if I were able, but facts are that I am not able. Sure I may have a great day here and there, but this disease is so unpredictable that I never know from day to day or moment to moment what will happen with me. So please be in prayer with us in this matter.<br />
Thanks for dropping by and taking time to read my blog. I hope you are having a symptom free day and enjoying it!<br />
~~MirandaMirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com1tag:blogger.com,1999:blog-4293045677481687367.post-89196030975879164452012-04-20T20:57:00.000-05:002012-04-20T20:57:48.722-05:00Head Cold and Dysautonomia = UGGGHHHHey there. I haven't blogged in just about forever. But, since this stupid sinus infection slash headcold has knocked me flat on my behind for 4 days now, I guess I'll take the time to blog! So, I'm not even sure where I left off last blog, so I suppose I'll just do a basic update. Before I got this latest bout of sickness I was trying to keep up with the most therapeutic thing I'd had going in my life. Small Gardening! I know what you are thinking. How on earth can you garden!?!<br />
Well, that is easy. Raised beds! They are hardly any work at all after the initial setup and even non-gardening people are capable of helping you out with that! So at the start of the year I had 2 raised beds set up for me. Each are both 4'x4' and 10" high and filled with a mix of composted manures, peat moss (would rather have had coco coir, but wasn't available at the time), and mushroom compost. We do square foot gardening so the beds are marked into 16 individual squares, each 1 square foot. You wouldn't believe the amount of vegetables you can grow in this amount of space! I've had LOTS of time where I haven't been able to do much of anything and that has given me LOTS of time to do research! So last year I started researching and there is a great book by Mel Bartholomew that can walk you through it! Click <a href="http://www.amazon.com/dp/1591862027/ref=asc_df_15918620271983864?smid=ATVPDKIKX0DER&tag=hyprod-20&linkCode=asn&creative=395093&creativeASIN=1591862027&hvpos=1o1&hvexid=&hvnetw=g&hvrand=1440909625244132485&hvpone=&hvptwo=&hvqmt=">HERE </a>for a link to buy that book!<br />
Anyway, I have the 2 4x4 beds marked into 16 square feet. Planting is SUPER easy, can be done sitting on a bucket, the ground, or a milk crate! This is GREAT especially for those of us who can't stand for long! So I get to garden while sitting and it only takes short amounts of time to get it done! No weeding! Very little watering! And no digging, tilling, or hoeing! Just the pleasure of getting to watch things grow and produce food! My favorite part is the flowering right before the food starts growing. It's so pretty! My other favorite part is that even my little girls can garden easily like this! FINALLY something I can do with my kids since I got sick!!! That in itself is to me a miracle! <br />
Oh, and the taste of organically grown fresh produce... OH. MY. WORD!!! Seriously, give square foot gardening a try if you need something rewarding in life to keep your spirits up on those super hard days!<br />
Speaking of the joys in life, my daughter has gotten herself some chicks and a rooster. He's a beautiful white silkie bantam and the chicks are 2 of each Aracauna, Silver Laced Wyandotte, and Buff Orpington. I am enjoying watching her learn responsibility and life lessons while caring for her birds! Plus in the afternoons sitting in the shade while the girls play, I get to watch the chicks and let me tell ya... chickens are funny creatures! So interesting to watch or maybe it's just because I've been forced to change the way I live in the last several years...lol Who knows!?! But either way it's relaxing and completely stress relieving.<br />
As far as the stupid disease goes, I'm doing everything in my power to live life to the fullest without killing over! I have really learned to read my body and most importantly listen to what it's saying. I rest frequently yet try to keep active as much as my health allows. I'm finally sweating again (yeah, never thought I'd be happy about sweat!) so I'm not overheating as often. That is a HUGE plus here in the South! Along with staying REALLY hydrated... I should own stock in bottled water... and eating better and taking short walks around my house as often as possible to build strength... I feel pretty good about how I'm handling life with Dysautonomia these days. <br />
At the checkout at Target when I got some meds filled and got the kids easter basket I met a lady. She was our cashier. She was working with more enthusiasm and speed than any of the other workers there. The catch... She was in the middle of radiation treatments for cancer. I knew before she even said it because I've had family members receive treatments for breast cancer before and she had the look they had. But I can't stop thinking about her and her attitude about her life. She was choosing to live for the moment. Live and enjoy every moment. Be happy despite her circumstance. That's what we have to do... Live for the moment and love the life you are living! I'm not saying that every moment is easy... heck it's definitely never easy with a chronic disease. But how we feel when we are sick doesn't have to be depressing! Find joy and laughter and cling to the happy moments! Never take a single moment for granted! It's true that laughter is the best medicine! Find something in life that is enjoyable and therapeutic for you and enjoy it as much as your health allows!<br />
Until next time, I hope you have an amazing day and a dys free one! If you are here and you don't have dysautonomia but some other chronic disease... then I pray it's a day free of pain and all that stuff!<br />
And if I'm rambling then I'm SORRY! Can't blame a girl for trying to write with a sinus infection and head cold for 4 days straight!Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com1tag:blogger.com,1999:blog-4293045677481687367.post-53348430607761901772012-02-28T14:00:00.002-06:002012-02-28T14:00:31.393-06:00Gardening Book Giveaway!Go to this site <a href="http://sweeps4bloggers.com/2012/02/giveaway-the-heirloom-life-gardener-by-jere-emilee-gettle-2-winners-ends-31112/comment-page-1/#comment-1465144">http://sweeps4bloggers.com/2012/02/giveaway-the-heirloom-life-gardener-by-jere-emilee-gettle-2-winners-ends-31112/comment-page-1/#comment-1465144</a> for a great giveaway! It's a gardening book, so all you home gardeners get over there!!!Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com0tag:blogger.com,1999:blog-4293045677481687367.post-18223776173035968632011-12-20T17:53:00.000-06:002011-12-20T17:53:27.028-06:00Not much to say, but...Just thought I'd do a short update. It's been a couple months since I last posted. Not sure if I mentioned my youngest and her dental surgery, but we made it through that in October. Made it through Halloween and Thanksgiving. Now Christmas is upon us in just a few days. All of the church programs are over and done with, and they were great! Now we are looking at Christmas Eve and Day celebrations. Especially the kids! They can hardly wait to open their gifts and enjoy all the family time! So that's what we've been up to. Short, sweet, and to the point! LOL Hopefully I will have more to update in the New Year. Health-wise, I've been okay. No severe blackouts that I can think of, just moderate problems. Nothing I can't persevere through!<br />
Anyway, Merry Christmas and I'll see you next year! :)Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com0tag:blogger.com,1999:blog-4293045677481687367.post-46670399662734158692011-10-23T13:52:00.000-05:002011-10-23T13:52:25.422-05:00Such a busy and tiring week...Well guys, it's Sunday the 23rd of October 2011. It has been a <i>very</i> long week! This leaves me <i>very</i> tired and cranky but at the same time <i>very</i> blessed. On Wednesday morning my four year old had an extensive and complete oral surgery under general anesthesia. She had to have her four top central teeth extracted and once they were in there they found that they were also abscessed. It's strange to me that my daughter never complained with pain and was continuing to eat! Anyway, she also got ten crowns... yes <i>TEN!</i> And some fillings. I know what you might be thinking... this is a kid who never had dental care, but the truth is she has had the same care as my seven year old and she only had 2 tiny cavities! It blew my mind at how much work was needed on my 4 year old. She has soft teeth, she cut all her teeth early (at 11 months she had the full set), and she drank a LOT of juice for tummy problems. All this combined left her with a mouth full of problems which she handled like a champ! So we are four days post-op and she's eating almost everything she wants. It really just blows my mind at how quickly children recuperate! But I am so blessed because everything went so smooth during her surgery. It was about 2 hours that she was back and under general anesthesia and the first day she was sleepy and had moderately mild pain. But God truly kept her in the palm of His hands! Now I'm trying to recuperate and of course it takes me much longer to regain strength! So I'm resting and sleeping and resting. And still never feel rested! *smile* But I'll get there... eventually!<br />
This week I have yet another Dr. appointment for the girls. The four year old has a follow-up with her pediatrician about her new allergy meds and my seven year old has shots. Oh and both are getting their flu shots. So another week and another doctor visit. It's like we never leave those offices anymore!<br />
On a better note we have both girls Halloween costume bought and they are looking forward to Halloween. I think their favorite part is getting all dressed up as whatever they want to be... well almost anything they want to be. I mean I've got to draw the line somewhere and I draw the line at trampy looking costumes and ghoulish costumes. But I never really have to govern in this area to much because at this points my girls are still vying for those cute little butterfly and barbie costumes! So the upcoming weekend will be full of cuteness ( my girls of course!) and candy and trunk or treating at church. So in between all this we are still homeschooling this week. Last week was a light week considering the surgery and all. But we have plenty of days already and plenty of time if we need it. So until next time have a less tiring week than I've had! :) God Bless!Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com0tag:blogger.com,1999:blog-4293045677481687367.post-7931481508103008392011-10-06T14:06:00.000-05:002011-10-06T14:06:09.939-05:00a lost voice is back...Hey everyone! I've been either busy or sick and as a result my blog has been vacant of a lot of posting! But today is a pretty good day. My kids are doing their homeschool work which at the moment is a book about halloween that they are coloring and reading. This means I have a few free minutes to get a quick blog in. <div>So, what's been happening around here? I'm still hangin' in there. I did have another silent migraine episode or something on Saturday and as a result I couldn't speak for about 3 days. But thankfully things are back to normal. I still find myself having to think sometimes before I can get the words out. I know what I want to say, but I have to concentrate at times to get my mouth to get it out! Weird feeling. That should pass soon too, it usually does. I'm also having to try and "fix" my sleep schedule again. Everytime I have a bad episode I sleep for HOURS more than the average person for several days. And then I have a day or two where I can't sleep much at all. Then I have to start working myself back to sleeping a normal nights sleep. Last night I lay down and just stared at the ceiling for so long just trying to bore myself to sleep! <i>Finally </i>I was able to fall asleep and slept well enough that I could get up 2 hours earlier than yesterday. So by the beginning of next week I should be back to rising around 7 and sleeping by 11. That's the goal anyway.</div><div>Some of you know that we (my husband and I) decided before children that homeschool was the way to go for us. It makes more sense now than it ever did and I'm so grateful that I'm allowed the opportunity to spend all this time with my kids. Watching them learn every day and getting to be a part of that is a blessing! Granted our homeschool routines are likely MUCH different than your average family! For starters I spend the entire lesson sitting with my feet up on the sofa. We pull a fold up table out from under the sofa and they drag over a couple kitchen chairs. I have all our supplies on the counter behind the sofa so everything is within an arms reach for me. This helps me not be as symptomatic as if I was standing or sitting with my feet hanging. This small detail is <i>very</i> important because the longer I stand or sit with my feet hanging the less blood flow I get to my brain which means less oxygen and that just spells disaster! But we have a system that works for us and so we use it. The girls have their responsibilities as far as who get/does what. The less physical work that I have to do, then the more clear-headed I remain. </div><div>Anyway on a good note. I was so scared and worried going into this school year. I worried all last spring and throughout the summer. I just couldn't figure out why my oldest daughter, now 7, couldn't read yet and why she was still having trouble writing some of her alphabets correctly. I even talked to my husband and mother in law about putting her in public school because I felt as if I were failing her. After much encouragement and a <i>lot</i> of prayer I did some research online about kids who struggled to read and write like she does. I found a lot of answers. All under one little word... Dyslexia. We haven't had her tested because it usually isn't covered by any medical insurance because it's not considered a medical problem and it's VERY expensive. But she meets all the criteria for a dyslexic child. So I changed my method of teaching her. I let <i>her</i> guide me in what worked best. I never considered asking a <i>child</i> what would be best... after all <i>I</i> am the teacher! How blind we can sometimes be as adults, huh!?! So after a couple weeks we worked out the kinks. I left the alphabet up for her so that she could look at the letters and then write what she saw. This worked well because she is great at drawing what she sees, so she would refer to the alphabet every time she came to a letter that she typically mirror imaged. Now it did take time. I still catch some of those letters mirror imaged if she's in a rush. I still have to look at her work and correct her by letting her know she mirror imaged a number or a letter, but by doing this she's began to check her own work more and compare it to the correct letter/number to see if they match. It's working out great! </div><div>Another thing I learned about kids with dyslexia is that they may be able to read a word at one moment and in one situation but in the next not recognize it. This was SO true with my daughter! Take a word out of a sentence and she'd be lost. Take the pictures away from her reading and she had no way of guessing what those words were! So I let her guide me in how to correct the problem. Phonics don't really make sense to her. When she sounds words out, there will be sounds and letters that aren't even in the word! BUT if we cover part of the word and work one letter at a time, most of the time she can get it. Her reading has improved from reading simple words like cat, dog, etc to reading at her level! I did a reading test this past week on her and was surprised to find how much she'd improved! Very blessed to have family who supports us in our decisions and prays for us to find guidance! I know that without God guiding me I'd have never learned so much about my daughter and would not be able to teach her the way I do now! </div><div>Let's see... other news in the Powell household. We've had to do numerous Dr. trips. Vision for the oldest, she needed very low prescription reading glasses. Dental for both. The oldest had a couple small cavities and got sealants. The youngest, now that's a dental nightmare. She's having dental surgery the 19th of this month. Keep her in your prayers. She also had to have a pre-op appointment before the surgery and we've gotten that out of the way. Total Dr. visits in all so far? 6 I think. I might have missed one in my counting though! That's not counting my husbands dental visits! Whew, that's enough to wear a healthy person down...just ask my mother in law who has taken us to every single visit! (Thanks Ni!) </div><div>For an extra curricular activity for the girls they chose to do the Build and Grow program at Lowe's. They go twice a month on Saturday morning and build a project. They get a certificate and a badge to sew on their Lowe's apron. It's a great project and I was surprised at the amount of kids they have going! The girls really enjoy it and we've made this our family day. They get to spend any chore money they've earned and they get to pick where we eat for lunch. So every other Saturday they have chosen Chinese food! Good thing we all like East Palace! :) Maybe next time they'll choose Mexican, Italian, or anything else kind of food... but I doubt it! </div><div>Anyway, the oldest is finished with her book. She's colored it and then she's read it aloud to me, all on her own. Two months ago that wouldn't have been possible, so right now I'm a very proud mama!</div><div><a href="http://1.bp.blogspot.com/-YYqTkDpzCk8/To37_cWWQmI/AAAAAAAAAJ0/ly1s_JWUwp4/s1600/spoons.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://1.bp.blogspot.com/-YYqTkDpzCk8/To37_cWWQmI/AAAAAAAAAJ0/ly1s_JWUwp4/s1600/spoons.jpg" /></a>Until next time, stay strong, fight hard, and LIVE! Life isn't worth anything if you don't live it to your best ability! Keep fighting Dys, and have an awesome day! Oh, and here's some spoons to help you through your day!</div>Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com2tag:blogger.com,1999:blog-4293045677481687367.post-22788477955698355632011-08-10T15:55:00.000-05:002011-08-10T15:55:51.890-05:00Homeschooling with DysautonomiaHey everyone. Just thought I'd do a quick update. As you all know I have Dysautonomia. Some of you know I homeschool our children and that the last couple years was VERY difficult having been diagnosed as well having a child school aged. I'll be the first to admit that school was very lax with my oldest for the last couple years, but she has just reached compulsory age anyway, so this year is actually the first she "has" to be schooled. So we are off to a great start. I don't feel great but I'm able to work with the girls and get their school time accomplished. Most everything else has had to take a back burner due to my feeling so sick afterwards, but my girls are first and the most important anyway. <br />
Anyway, they are doing so good! I'm very proud of them. They have very different lives from children who haven't got a sick parent, but they are exceptional little girls despite or because of my illness... who can really say for sure! I do know this.... they are very compassionate and very prayer and God believing little girls because of the life we live! It's amazing watching them grow up, sometimes WAY too fast for my liking, but yet they are growing up knowing and loving God and life around them. I pray that they see that I take no moments for granted and I strive to enjoy every moment available to me... and I do believe they see this because I see it with their own little lives!<br />
We don't have a typical structured school day. Some days we start early and are done by lunch. Some days we eat lunch and then school and are finished by mid afternoon. It just depends on what works for that day. Yet every day has it's routine. They do their chores before school and earn their points to cash in on Eric's payday for their allowance. This is something new and they are doing GREAT with it! Then we eat either breakfast or lunch, depending on the time, followed by school. And they have the rest of the day to pretty much be kids!<br />
That doesn't mean that it is "learning-free" time though. We still do activities they learn from. Gardening is one of our favorites to do together. Working with the animals is another. Both of my girls want to be some form of animal doctor when they grow up. So I think it's important to let them learn the responsibilities of working with animals. When we are working with the garden they are learning so much that can help them in their adult lives as well as current school work with science and math. It's amazing where you can tie in school with every day living!<br />
Anyway, that's pretty much been what's going on life wise. Health wise I am struggling with extreme nausea, headaches, heart rate fluctuations, blood pressure doing it's own thing, sleep is insanely messed up, blurry vision, all over aches, and on and on.... It seems like my body is just in a weird funk and can't pull through it. But God will grant me strength to get through each day and I'll make it! So if I look or sound funny in the meantime, just laugh WITH me about it...lol Can't go through life without finding humor in what ails us! Until next time, God Bless and keep fighting Dys! Love you guys!Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com3tag:blogger.com,1999:blog-4293045677481687367.post-84603489981208231742011-08-04T10:59:00.000-05:002011-08-04T10:59:56.134-05:00Sleep, Sleep, SleepHey everyone. Sorry for the really long delay in getting a Dys. update posted. I've just had a lot going on lately. But, here I am... finally! <br />
So topic for today is SLEEP! I have been sleeping SO much. Just can't seem to get rested enough. I guess my body finally said, "OK! ENOUGH!!!" and now every chance it gets it sleeps.<br />
Like I said, we've had a LOT going on. I still don't know how I made it through everything other than strength from God! Our church's had a State Convention and our church was on program to lead worship for one of the services. So we had practices for that, but I didn't make it to all of them due to not feeling well. Then my husband had dental surgery so we stayed with his mom for a few days in case he needed a ride back to the Dr. since I can't drive... not to mention he was VERY sick and I don't handle vomiting and things well...lol Then there was the state convention. Then I had a few days to rest up and my family from S. Ga drove up and stayed from Sun. through Thurs. And I've pretty much been sleeping since they left. Not always restful sleep, but sometimes sleeping so deep no one can wake me. Anywho...<br />
Quick shout out to my mom. Today's my mother's 50th birthday and again, I'm stuck here in B'ham AL unable to travel to be with her on her big day. I miss spending birthdays and other holidays with my family. But I hope she has an awesome day today! My mother is the best! I love her with all my heart and can't wait for the day when they are able to move closer or something. I really miss them! It's been 9 + years now that I've been living here in Alabama and apart from my family. I love it here though and can never imagine living anywhere else. Good thing is they also love it up here and hope to move in the next few years I think. That would be awesome! Maybe then I can handle the trip well enough to visit them! Anyway, Happy Birthday to you mama.... I love you VERY much! You're the best!<br />
Signing out until next time, MirandaMirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com1tag:blogger.com,1999:blog-4293045677481687367.post-51950936257026313782011-06-16T12:22:00.000-05:002011-06-16T12:22:27.044-05:00Dysautonomia - video 3<div>Just realized I never blogged this video! It was video number 3 taken June 4, 2011. </div><iframe width="480" height="295" src="http://www.youtube.com/embed/cU-y-_pePdo?fs=1" frameborder="0" allowfullscreen=""></iframe><div><br /></div>Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com0tag:blogger.com,1999:blog-4293045677481687367.post-26974058806421370832011-06-09T14:52:00.000-05:002011-06-09T14:52:26.167-05:00Oh Come Let Us Adore Him - Christmas 2010<div>Me singing at church during the Christmas Program. It's rare for me to be able to do this, especially lately and I really love singing. Hope you enjoy it. </div><iframe width="425" height="344" src="http://www.youtube.com/embed/hJYwZOg_ML8?fs=1" frameborder="0" allowfullscreen=""></iframe>Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com0tag:blogger.com,1999:blog-4293045677481687367.post-90867829237383019132011-06-09T12:28:00.000-05:002011-06-09T12:28:25.305-05:00Last NightLast night I cried for you<br />
My tears flowed like rivers<br />
with no end in sight.<br />
<br />
Last night again I mourned<br />
Feeling helpless in the situation<br />
Knowing that I've lost you<br />
<br />
Last night like a ton of bricks<br />
Your absence was smothering<br />
The air was thick with sadness<br />
<br />
Last night again I was reminded<br />
Of what we once had<br />
Of what we once did freely<br />
<br />
Last night I was alone<br />
The air being sucked from my lungs<br />
A feeling of helplessness covering me<br />
<br />
Last night you failed me again<br />
And terror filled my very being<br />
It's the not knowing what minutes hold that pains me<br />
<br />
Last night the darkness enveloped me<br />
Like a fog of loneliness<br />
Because you left me helpless<br />
<br />
Last night I cried for you<br />
The life that once was<br />
The freedom that once lived<br />
<br />
Last night you showed me your absence<br />
What life is like without you<br />
That every day is scarier with your loss.<br />
<br />
Last night I sat helpless in the shower<br />
As the water washed away my tears<br />
Tears shed of a body no longer well<br />
<br />
Last night again it hit me<br />
You are gone leaving a vulnerable shell<br />
You, my health, are gone.Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com0tag:blogger.com,1999:blog-4293045677481687367.post-69026301874548048272011-06-08T10:26:00.001-05:002011-06-08T11:42:41.274-05:00Dysautonomia Update 4 - Specialist Visit<div>Hey Corrine, I hope if you see this it will give a few answers to the comments you've left recently. </div><div>The garden is looking great. I was able to get a lot done of the space of a few months when the weather was cool enough and my daughter was a great help to me as well. We have a youtube channel. Just look for emsapowell and you can see all our vids on the garden, family, pets, and dysautonomia there. Kiah now has a new penmate, Bandit. He was my mother in laws dog and she couldn't keep him anymore and we couldn't see him go back to the shelter, so we took him! He's an awesome dog. Kiah is jealous and bothers him constantly when we are around, but when we're out of sight they are best pals...lol We have 4 cats and 4 kittens (almost 4 weeks old) and another litter on the way! I'm going to lose my mind before we get them weaned and homes found...lol Gotta get them fixed this year for sure so this doesn't happen again! We also still have the hamster, although I am wishing he'd go on to hammy heaven...lol And we got a turtle last week. My daughters are HUGE animal lovers, so they are loving our new place and all the freedoms they've aquired that apartment living did not allow! </div><div>As far as my blacking out. I was expecting it as it got hotter. My body just does not accept or tolerate the heat and it seems to jumpstart and kick my symptoms into overdrive. We are working (my dr. and I) on getting the right meds, but even with the meds I have problems. The video from my appointment on Monday may offer some answers, so I have new Dr.'s to see. I wish I had insurance, but we'll just keep praying and trusting in God and everything will be fine! I hope you are having a great day and PLEASE do hit me up on Skype when you can. Again, my name on there is emsa_powell. </div><iframe allowfullscreen="" frameborder="0" height="295" src="http://www.youtube.com/embed/8FvWh-vYoEE?fs=1" width="480"></iframe>Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com0tag:blogger.com,1999:blog-4293045677481687367.post-86572902971780778332011-05-27T23:55:00.000-05:002011-05-27T23:55:06.935-05:00Trying to live my life to the fullest...Hey everyone. It's been a while since I last posted. Life has been busy for me and that is a good thing. And by busy, I simply mean that the weather has been cool enough for me to take short strolls in the yard and pot a few flowers and veggies...lol Haven't been anywhere like on a trip or anything like that, just trying to stay occupied. I'm learning that keeping myself occupied with things I can physically do for a few minutes here and there really helps keep my spirits up. So I'm gardening. I don't have a massive garden, and I'm not able to go all gung-ho on it, but it looks nice. Of course I have lots of help in the form of a 7 and 3 year old :) <br />
So I've been slowly building my garden up for about 4 months now. Started some seeds and realized WAY too late that I really had no clue! We didn't label anything, so had no clue what was sprouting. But it was fun times for me and the girls, just sitting on the porch floor in the shade putting tiny seeds into tiny starter pots. We probably lost about 75% of the flower seeds we planted because we did things wrong. But the veggies we have are thriving! Lots of blossoms on the veggie plants and we can't wait for fresh tomatoes, cucumbers, cantaloupe, beans, corn, etc. It's a small amount of each, but it'll be fresh! We also planted lettuce. Of course we did it wrong, so instead of getting the beautiful big heads of lettuce, we had a massive patch of green baby lettuce, but it tasted SO good! This was my daughters tiny garden patch and she has been so proud of it! I'm proud of her too!<br />
Next year we'll be a little more garden savvy and wiser. The girls will be a year older and I'm sure they'll be doing more than they did this year. I'm limited to what I can do, but like everything else since I've been sick, I've learned that if I think about it... there is a way to do things. I've learned there is plenty of time during the day and if I do 5 or 10 minutes here and there then by the end of the day I've accomplished a half hour or so of outside light gardening and this is a great satisfaction to me. It's been a while since I have had anything that I could do so little of but get such huge rewards!<br />
The disease is on the warpath again though. Blackouts are weekly again and they are back in the 1 hour time frame. Also the seizes and full body tremors are back with a vengeance. I really love the summer because it's so green and lush, but man does this heat aggravate and trigger my symptoms! So my time in the yard is getting shorter and shorter, but due to the massive amounts of shade we have, if I have a fan on the porch blowing directly on me and I'm in the shade I can at least listen to the birds and stuff and that's nice. I've missed that so much. At the apartments we lived at all these years, there just wasn't a place I could enjoy like that.<br />
I have another Dr. appointment next month. I really am dreading it. I was supposed to call if the heat started messing things up with the symptoms, but I am really trying to hang in there with the meds I have now. I guess deep down I know that the meds need to be adjusted, but it's so nice only taking meds once a day.<br />
See, my Dr. and I discussed the option of adjusting my meds based on the temperatures. Hot weather is a HUGE trigger for my symptoms so they are more severe during the warm-hot weather and less severe during the cold. So we are trying this out to see when I need more or less meds.<br />
I'm also still waiting on my disability appeal hearing date. I really wish they'd get this thing rolling. Anyway, it's almost midnight. My sleep is really messed up (another thing that always seems to mess up when it warms up) so I need to lay down and TRY to sleep, but it'll take a couple hours or more just to fall asleep. So goodnight everyone and I hope that you are having a fabulous day while you are reading this! God Bless!Mirandahttp://www.blogger.com/profile/07401223927172594228noreply@blogger.com2