Friday, May 20, 2016

Thankful 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!
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!
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!
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!

Friday, January 9, 2015

It's the Flu ....and Swag Bucks... lol

Well 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. :)
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 here, 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.
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.
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 HERE!  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!

Tuesday, November 11, 2014

A rough couple weeks...and my apologies

Hi 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.
Thanks for dropping by and reading my randomness! Until next time, have a blessed and healthy day!

Sunday, October 26, 2014


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.
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.
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.
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.

Monday, October 6, 2014

It'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.

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.
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.

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!

Thursday, July 25, 2013

Just 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!
  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!"
  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.
  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!
  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!
  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! :)
  Have a blessed day and check back soon for an update on our newest addition! See you soon!

Thursday, May 30, 2013

My 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.
  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.
  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.
  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!
  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!