Wednesday, January 27, 2010

tachy, insomnia, and blood pooling oh my!!!

Well I'm just sitting here waiting on my husband to get home from work so that I can shampoo the spot that my 2 year old just spilled ovaltine on my living room rug.  The way my heart rate has been today, I don't typically pull out a vacuum or anything without someone here due to being scared I'll black out and my children will be unattended. So I was sitting here waiting and talking to my almost 6 year old about why she can't kiss boys this young (what am I going to do about her??? lol) And after taking her off my lap feeling confident that she understood that she can think a boy is cute but she can't kiss him yet, I looked down at my leg that I had down and the one that I had tucked under side by side. This was the result.  I had never noticed how purpley/pink (or lavink as some fellow dys ladies have called it) that my legs would get because they were always both equally pink I suppose.  And seeing the leg with the blood-pooling in it compared to my shockingly white one, I really wish that sunshine and heat were not my enemy! Now mind you, this was only after a few minutes conversation, not standing on my feet for an hour or more, and I could tell a significant difference in how my left and right legs felt. One felt all tight and prickly and sore and the very very white one felt perfectly fine. The only likeness was they were both very cold, but that is nothing new!  Anyways, I just I'd post this while waiting on my husband to get home, so I can stand on my feet and vacuum up the chocolate milk my 2 year old spilt in my living room floor.  Of course she didn't tell me about it and I'm just seriously hoping I get it up! So for all you Dys people out there who perhaps aren't sure what blood pooling looks like, and I suspect that my picture is a mild example, as well as all my non-dys friends who often wonder why I might keep my feet propped up at church or other places or why I am constantly trying to keep them moving... well this is why! Because the longer they are down the more they hurt and the darker they will get.  Just don't make fun of my comfy shoes when my tennis or boots are too snug! :)  Well my husband is opening the front door now and I must take care of that spilt milk! Until next time...

Friday, January 22, 2010

30 Things About My Invisible Illness You May Not Know

I think I've posted this on facebook before but no on my blog. I found it today while browsing other blogs and decided I'd post it here as well. 

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Dysautonomia. Basically means my Autonomic Nervous System (ANS) which controls your auto-pilot bodily functions (those you don't have to conciously do, like heart rate, breathing, blinking, reproductive system, etc) is basically broken, if you will.  I have no specific Dys. diagnosis as I was told that I was just a different case. I have sleep problems, tachycardia, I "think" Mitral Valve Prolapse but not certain, it is on some of my medical information but not all, IBS, Black-outs, migraine syndrome (including the ones with headaches and the "silent" ones without the headache which typically cause stroke like symptoms and numbness), and a variety of other annoying little problems.

2. I was diagnosed with it in the year: 2009, almost a year ago now. Although the other things that I didn't know were a part of it, like the migraines, the problems with caffiene, other intestinal and stomach problems, etc began being diagnosed about 16 years ago when I was in 7th or 8th grade and they just kept coming.

3. But I had symptoms since: almost my entire life I've had problems that I am now informed were most likely due to my Dysautonomia.

4. The biggest adjustment I’ve had to make is: I think the hardest thing for me has been losing my independence and having to rely on others for help. Not being able to get outside and do all the mom/daughter things I have always wanted to do with my kids... and no, not shopping :) But taking my oldest to the lake fishing and things like that are not possible without someone to go with me and ensure that nothing happens to me while I'm out on the lake. I can't drive due to the migraines appearing at any moment affecting my vision and also there is the brain fog from the dys. which has noticeably shortened my reaction time and clarity of thought at times.  I think about the 3rd child I wanted to have, and the likely-hood of that happening is slim because I got worse with both of my pregnancies.  Getting used to the stares from people when I use a wheel chair at Wal-Mart because I have a lot of shopping to do, but I try and ignore it because the fact that I'm at Wal-Mart and not stuck at home is great for me!  Learning to slow down on my good days so that I have more of them, instead of waking up to say "I feel great today!" and then blowing all my energy within an hour or two and end up crashed for days or weeks afterwards! Learning to choose what's important like taking my kids outside and spending time with them,  and ignoring the things that to others are no brainers, like doing laundry or dishes, etc.  And the possibility that I might wake up tomorrow and need help getting dressed, or even using the shower chair to shower exhausts and sickens me to the point that I need assistance finishing up and getting out, dressed and to a chair or bed to rest.

5. Most people assume: that just because I'm up and walking today, that I'm feeling great! Or that I'm doing much better now! When most of the time it's taken a week of rest and being very careful not to over exhaust and to hydrate and stay hydrated, and to avoid any and all stress JUST to make it to a single event, like church and practice, or to a family dinner, or to the grocery store. I never just wake up and say "Lets run to the store!" or "Let's go to the park!" I have to make plans now, and ensure that I rest enough to have the energy and strength to do the planned activity.  And even then, I may wake up the morning of those plans, and they are thwarted by a bad day of Dys.

6. The hardest part about mornings are: a couple of things. Right now it's watching the sun rise because I'm still awake from the day before because of my insomnia. And if I have to get up and get dressed to be somewhere, I know it will take several hours of me paceing myself to not tire myself out in one go. I hate the morning nausea and headaches and stiffness. I hate the morning cloudiness I feel in my thinking. And I hate that after making it to the bathroom and then to my recliner I'm already tired and I just woke up!

7. My favorite medical TV show is: Grey's Anatomy and Private Practice, but mostly because I think they deal with weird medicine stuff very little... lol It's mostly their lives that are discussed. I used to watch House, but when you live with a weird, rare, incurable disorder that is hard to treat... it gets hard watching someone else have their mystery disease solved in an hour!

8. A gadget I couldn’t live without is: 1. my laptop and wireless connection. On days I'm stuck inside it's my window to the outside world. People to chat with, blogs to read, facebook connections, and games. Helps those horrible days to pass a lot faster. 2. my shower chair. Thanks to my mother in law, I'm able to shower without constant supervision and someone asking the whole time "are you ok?" lol  Although there are still days that even using my chair I have to ask someone to assist me. 3. my ipod and 4. my camera 5. the remote control 6. a cordless phone 7. a microwave... lol

9. The hardest part about nights are: ugghh... the insomnia. Not being able to fall asleep or actually falling asleep and waking every 15 minutes or so.

10. Each day I take: my meds, lots of gatorade and water

11. Regarding alternative treatments I: have not tried any other than exercise (got sicker due to my heart rate). I've come to the conclusion and reality that there are things that might help, but unless God heals me, I'll continue to fight this for the remainder of my life. I will try anything my doctor suggests though because I feel God opened the door and led me to her.

12. If I had to choose between an invisible illness or visible I would choose: I personally wouldn't "choose" either, but God created me. He alone knows the reason for this disease and my having it. If it brings glory to God in anyway, then so be it. I know this life is only temporary and I'm living my best to make Heaven my home. Whenever God sees fit to have me there, I know my body there will be perfect health! This life is fleeting but Heaven will be an eternity!!! That knowledge in itself is enough to give me a little more strength to make it another step closer!

13. Regarding working and career: Well I chose to be a stay at home mom and to school our children at home. So not being in a career doesn't bother me. But the fact that I have no "choice" in it anymore and that this disease has altered my plans as a stay at home mom, isn't so fun. When I chose to stay home with my kids and homeschool, I pictured us getting up early, on a schedule every day, and getting school work done and spending the remainder of the day doing something fun outdoors. Reality: Schedules are hard because my sleep is out of whack and I have to rest when I can. Outside activities when it's warm enough to enjoy make me sick especially if it's an active activity,  because I'm heat intolerant and it worsens my heart rate and makes me sick. So yeah, having to sacrifice the things I imagined for us, is hard, but I've learned that my children are happy and healthy and very smart children and they love me for who I am, not what I do or where we go!

14. People would be surprised to know: how isolated I feel. I spend every day of my week sitting at home with my kids, computer, and tv. Not much adult conversation. The only "friends" I have to chat with daily are my mom and mother in law. Other than them no one really calls. I get out of the house about once a week, on sunday for church. And occasionally someone will offer me a ride *husband works evenings* on Wednesday nights and that's 2 days I get out of the house per week. That is almost every single week, unless there is a dr. visit.

15. The hardest thing to accept about my new reality has been: knowing that I'm an outdoors girl, living with a disease that keeps me indoors most of the time. And giving up part of the future I imagined myself having.

16. Something I never thought I could do with my illness that I did was:  outreach and ministry because I am no longer able to get out and about. The funny thing is, I've made contact with more people through this blog and other websites and been able to email and chat with people about my faith in God, than I probably did before I got really sick. My weakness is making me spiritually stronger, and also giving me an opening to share God's love with people I would never have met otherwise! God is using my physical weaknesses to show me how to find spiritual strength!

17. The commercials about my illness: Commercials? About Dysautonomia? Is there even such a thing? The only thing I've found about my illness and this disease is a few websites on the internet, and I mean a small number of them. The majority of what I read about it is from other sufferers of it. Not the media, medical community, or our health systems.

18. Something I really miss doing since I was diagnosed is: spending long days out in the summer time fishing, going to the park and walking, cooking (I really miss cooking big meals), going to thrift stores and just leisurely plundering through the odds and ends looking for neat old stuff, and most of all probably would be traveling the distance home to visit with my parents, sister, and nieces and nephews. And of course missing days with my kids, because I'm stuck in bed.

19. It was really hard to have to give up: my independence and choice to do things.  My body dictates what I do now, or don't do I suppose.

20. A new hobby I have taken up since my diagnosis is: blogging and online gaming. Recently gotten back into learning HTML and CSS some. Well attempting to learn :)  I may rework this blog soon with what I'm learning!

21. If I could have one day of feeling normal again I would: go fishing with my daughters, Go camping for the first time (real camping, not cabin camping), Go to Disney World or somewhere my kids would love that requires a lot of walking and just enjoy it!  I don't know how I would fit all this into one day :)

22. My illness has taught me: that I am loved, cherished, and important. I have the best family, friends, and church family that anyone could ever have. And most of all, I've learned that God truly cares for each and every aspect of my life because he has provided and been there with me through all of this!

23. Want to know a secret? One thing people say that really bothers me is: "You should stop focusing on this disease, move on, and get better." I really and honestly wish I could remove the word "Dysautonomia" from my thoughts and I'd be all better!!! But last I checked, Dys. is a disease of the ANS, and not the thought system!!!

24. But I love it when people: say You're life and testimony is a blessing to me.

25. My favorite motto, scripture, quote that gets me through tough times is: 'But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.' Isaiah 40:31  Because I long for the day that I can walk and run and not be sick.

26. When someone is diagnosed I’d like to tell them: that when they feel they have no strength left to fight. When they feel that their last ounce of energy has been spent... look to Jesus. For only through Christ will we find the necessary strength to win this battle and the next one too.  "...I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through Him who gives me strength." Philippians 4: 11b - 13, NIV.

27. Something that has surprised me about living with an illness is: how quickly I can go from feeling fine to needing help just to stand or dress myself.

28. The nicest thing someone did for me when I wasn’t feeling well was: wow, there are so many things... I guess the cards, prayer cloths, phone calls to check on me, help cleaning my house, help getting into church, the list goes on and on...  And I suppose that something that people tend to forget is nice, is realizing that I have problems with things, but you let me get through them with some dignity left by just silently supporting me. This is a true friend!

29. I’m involved with Invisible Illness Week because: there is so many people that have never heard of the disease even in the medical community! If you don't believe me, have an ambulance pick you up and they ask your history and this is part of it. And they ask you what it is!  Or go to an ER with a problem associated with Dys. that presents like a possible other problem (like my silent migraine that appeared as a stroke but wasn't) and have a Dr. who just can't find the answer and doesn't know anything about these problems look at you and tell you it's all in your mind and you should see a Shrink! (HONESTLY!! THIS HAPPENED TO ME!!!) Thank God for Dr.'s and medical staff who will listen and look for the answers instead of declaring a mental disorder wrongly!

30. The fact that you read this list makes me feel: that I truly have friends and family who love and care for me.

Saturday, January 16, 2010

It’s Been Awhile!!!

Well I find myself deciding that I need to update this blog. It may wander a bit here and there because it’s after 2 am and I’m brain-fogged. But here goes. :)  There have been a few changes in my health since my last blog. Main update here is that I haven’t blacked out, which has been quite nice.  Hitting the floor hard is not something I enjoyed. Many bumps and bruises, scrapes and sore spots from where I landed were such a daily occurrence there for a while. One scrape has finally healed over in the past week.  I caught another bad cold just before Christmas and in the last week I’ve finally seemed to get over that also.  So for now it seems that other than my heart rate and sleep causing me to feel tired and fatigued most days, I seem to be doing ok for now.  Only have the occasional serious headache/migraine problems as well. So there is my latest health in a nutshell.  I felt great today. I cooked supper without assistance, I partially cleaned my girls room today (that is going to need more attention tomorrow), and I managed to get outside and watch the girls while they enjoyed the warmer weather we had for a change today.  So today has been the best day that I’ve had since before Thanksgiving at least.  I thoroughly enjoyed it too!

This past Wednesday our children’s pastor called asking if the girls could go to church. Eric works evenings so we usually miss all the Wednesday services, so of course I was thankful that someone asked for them to go. I decided to go along as well once I saw how nervous my oldest little girl was when she realized I would be home alone.  I just couldn’t bear the thought of worrying her more than she already does. So I managed to get us 3 dressed and ready on time.  It was so nice to get out of the house and be around people in the middle of the week! The weeks are so long due to me never getting out during the mid week that often. 

So I get to class and it’s just myself, Sis. Carolyn, and my pastor Bro. Wallace. We ended up discussing my disease more and I explained it more to my pastor and Carolyn. We eventually got on the subject of my blog and computers and how often I’m on the computer. And from that conversation I got a new goal to work towards! Right now I’m in the middle of learning more about blog template design so that I can build a custom blog site for our church! I’m really excited about all the computer work they’ve asked me to do!  I love working with power point and anything to do with photos. So with all the stuff we discussed that I will be doing this year should have many more interesting days than this last one had! Online gaming and face book can only keep my interest for so long and then the days start to drag. Since I’m pretty much in a recliner all afternoon while Eric works to cut down my risk of falling while being home alone with the girls, this is going to work out perfect for me!  So I’ve spent the last 3 days reading tutorials online and using what I learn to change a practice template that was provided by the tutorial author. I know that learning the HTML and CSS and all the codes will take me longer than it would have 8 or 10 years ago, but I’m determined to learn it, no matter how long it takes! I’ve set up a private practice blog that I can just change and play around with until I learn. So it’s going to be an interesting year for me… with the brain fog and all the codes I’ll be staring at ever day I’m quite curious to see what this jumbled brain of mine can accomplish!

So there it is, my last month in just a few paragraphs. Not very exciting reading but trust me, I’m excited about this year! I have goals and aspirations. My resolution this year was to work towards getting better and finding something worthwhile to do. I think I’m on the right track now! I have something to look forward to learning while I try and work out my medical issues and I have a great Doctor that I’ll be meeting with again next month who I have great faith that she’ll be able to get me sorted out. After all, I do believe it was God that led me to her office and to her.

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call upon me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. 14 I will be found by you," declares the LORD, "and will bring you back from captivity. (Jeremiah 11-14 NIV)

I know that God holds my life in His hands. The very hands that fashioned me in my mother’s womb back in 1980. He wouldn’t have taken the time to place each individual cell in it’s place to give me life, only to let this disease take it from me. I may not have the life exactly as I planned, but after all the scripture doesn’t say it’s our plans that will prosper us and not harm us, but HIS PLANS!!!  So I’ll cling to my faith in His word. My life has been, is now, and always will be in HIS HANDS!!!

So until next time, I’ll leave you with that scripture and that thought. Never forget Who Holds Your Life In His Hands!!! He holds your current situation and your tomorrows! He held you during all your yesterdays! He’s the creator of all life, and all life is precious… Your life is precious! I know some of my Dys. friends read my blog and I know that there are days when this disease just really wipes us out. Some days you just don’t feel like fighting and moving on, you just wanna quit! Trust me, I know. But I also am reminded daily that God created me and like a friend told me on Wed. night. Her mother has had MS for many years. But my friend said that her mom has always said she was blessed to have MS, because it meant to her that God trusted her to not give up and walk away from her faith in Him. I might not have those words exactly right, but that’s gonna be my new motto. This disease may have taken a lot from me, but I’m gonna trust that God is going to replace those lost things with much more important ones! I won’t give up my faith in God and walk away, and I’ll never blame God for my disease! Like I said, He fashioned me in my mother’s womb… He knows what my tomorrow’s hold! I will trust in Him!!!  For His plans have always been to prosper me and not harm me. Plans to give me hope and a future! After all, who do you think led our children’s pastor to call us on Wednesday night, offering to pick us up for church, leading to the conversation that led to me having something to do this year??? I don’t believe in chance… I believe this was God giving me a bit back to replace what I’ve lost… Hope for my future!

All things work together for the good of them that love God! (first part of Rom 8:28)

Thursday, January 14, 2010

Looking for Someone

I know that this may not be the best way to find someone, but I'm hoping that you see this and are able to contact me.  All I have is your name and location that you left in a comment asking if we could chat.The comment was as follows.  hello miranda its phera ncheke in south africa i have read your story n i want u 2 chat with me plz it realy touched me.   You can reach me at