The forum from www.dinet.org, that I find a lot of information and support from, just released a new documentary/informational movie. It is long, but if you would like to understand more about what I deal with, I would appreciate the understanding.
http://youtu.be/8UPMYNkm6Bc
Also, a blog I often follow released "30 Things": I thought I'd add my 30 Things, hopefully in a positive note although it has been a VERY difficult day today. The heat today, the stress of moving and packing, my children being unruly and hyper in an almost empty house has led to me having a set-back and needing to find some sort of relief.
1. The illness I live with is: Dysautonomia- POTS (Postural Orthostatic Tachycardia Syndrome)
2. I was diagnosed with it in the year: 2010.
3. But I had symptoms since: 2006 I think.
4. The biggest adjustment I’ve had to make is: giving up a lot of my independence and letting go of the things I used to be able to do.
5. Most people assume: People who haven't known me for long assume that I should get better someday. I just need the right doctor, the right medicine, the right supplement, or more prayer. Also- I would guess that most people assume that because I'm standing or functioning that I must be feeling wonderful.
6. The hardest part about morning is: being the most sick in the mornings. :( I am so dizzy, light-headed, and foggy in the mornings. I am dehydrated as well as waiting for my medicines to kick in. Its also a little depressing in the mornings as I constantly pray the night when I go to bed that I will wake up cured. I have faith that in time God will heal me.
7. My favorite medical TV show is: I used to watch Grey's Anatomy but really I dislike medical shows. I think it either is too junky or gives me false hope that they could "cure" me. :(
8. A gadget I couldn’t live without is: my phone! With the amount of brain-fog that I have, I cannot live without my contact lists, my email, date book, etc. Also my phone has my books both on my kindle to read as well as my podcasts to listen to while I am having rough days and am laying down.
9. The hardest part about night is: being tired and exhausted and not able to just lie down and fall asleep.
10. Each day I take several medications, and can't seem to always remember which one to take when. I've tried so many systems but it just gets confusing. I feel like an old person. :(
11. Regarding alternative treatments: I have not really tried alternative treatments besides natural healing with regular exercise and strength training. I also have tried a "roller" to help in the part of my spine that the postural "stuff" if most out of whack. It didn't help but I often am desparate for trying anything.
12. If I had to choose between an invisible illness or visible I would choose: invisible. If I have to feel awful, at least I can look good. Also, though, I wish that sometimes people could just be more understanding. I guess I used to get frustrated when people parked in a handicapped stall and walked fine to the store. However, that is going to be me soon as I can't walk as far without my heart racing so high some days. :(
13. Regarding working and career: I decided to give up teaching as accommodations were not made for my disability. I worked for 2 years to ask to go part-time or get a permanent sub for certain days and feel as if I was bullied to the point that I decided to quit. I miss teaching and loved what I did. The disability was definitely not understood and was something that they did not want to accommodate, which is sad when it is hard to find teachers that truly have the heart for teaching. I will miss it.
14. People would be surprised to know: that I melt-down much more than I talk about. I throw pity- parties often and feel so unfairly dealt some days. I hate for people to know that about me, but I feel like the prayers and words of encouragement help tremendously. I know there are many in worse situations yet I grieve for the person I used to be.
15. The hardest thing to accept about my new reality has been: grieving the person I used to be as a wife, mom, and daughter. Also, the people closest to me often are the most critical about how I feel. Its not common for my family to show sickness or weakness. It is difficult for me to ask for help.
16. Something I never thought I could do with my illness that I did was: teach. I had one of the most successful years as a teacher, despite the many obstacles stacked against me. Now, I will focus my energy on being a mom as best I can with my 3 boys.
17. The commercials about my illness: do not exist. Dysautonomia isn't all that rare, but it is not well known. The commercials about fibromyalgia are ridiculous- they make it sound like a walk in the park after you take those medicines.
18. Something I really miss doing since I was diagnosed is: RUNNING!!!!! It was such a stress relief. I still enjoy walking but can't go too much without having a high heart rate. I would LOVE to run a marathon! I believe I can.
19. It was really hard to have to give up: my dreams of hiking with my husband and kids on vacation or having more kids. :(
20. A new hobby I have taken up since my diagnosis is: focusing on being a better disciple to my Lord- I want to devote my life and time to serving him in all that I do. I listen to a lot of sermons and devotions to learn to be more graceful and forgiving.
21. If I could have one day of feeling normal again I would: have a million, kajallion things to do and would pay for it the whole next week. . . .trust me- I've had that. I have woke up on days where I felt completely healed and rejoiced. I took the kids to the park, the zoo, out for lunch, to go go go. . . and the next few days I couldn't get out of bed. Sometimes though, crashes are worth it!
22. My illness has taught me: people need help even when they don't ask for it. I am learning now how much meals can help people in need. My family hasn't had a decent meal until Shawn comes home on the weekends. :( I just can't juggle it all. When I move and get established, I want to serve others. I want to help them and offer without them feeling the need to ask for help.
23. Want to know a secret? One thing people say that gets under my skin is: "God has the power to heal you, you just have to ask and believe."
24. But I love it when people: know my heart. They know I hurt and so they don't ask superficial questions. I appreciate sincere offers of help and assistance.
25. My favorite motto, scripture, quote that gets me through tough times is: “Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all" (2 Corinthians 4:17-18, NIV).
26. When someone is diagnosed I’d like to tell them: “I’m so sorry and I am here to listen and understand. God is almighty and He gives us strength."
27. Something that has surprised me about living with an illness is: how easy it is on some days and how incredibly hard it is on other days. Also, I've been so surprised at how difficult it is to explain to people. :(
28. The nicest thing someone did for me when I wasn’t feeling well was: help me with my kids and also some have brought us meals. It has been some of the most helpful and kind things that they have done. I feel indebted and will pay it forward someday when I can.
29. I’m involved with Invisible Illness Week because: I think it is important to spread awareness for dysautonomia and other invisible illnesses, and because it is fun to work together on this with others who suffer from invisible illnesses.
30. The fact that you read this list makes me feel: thankful.
Her FAQ section is REALLY good about explaining things, especially about the heat (at this particular time). I get really frustrated (ask Zachary) when coaches come to the fence and yell that they need a parent volunteer and we can't do this without parent volunteers. I just want to cry. I look healthy most likely, but there is no way I can stand out in the heat of the game and coach bases or pick up the balls for the tee-ball kids. :(
Thank you for my prayer warriors. Sorry this list was a little long. :(
Chance Family Happenings: This blog is an attempt to keep our family and friends updated with the goings on of our busy lives. It is a way to reflect, share, and cherish the memories that pass too quickly in time.
Thursday, June 14, 2012
Saturday, June 9, 2012
Friday, June 8, 2012
The Elephant- Our Vow Renewal
Its come to my attention . . . again. . . that our vow renewal is causing a riff in some things. I hope to clear up some issues with this post. Earlier this winter/spring, Shawn and I hit a difficult spot in our marriage. While each winter seems to be draining, this one followed a difficult summer/fall of having him lose his job and struggling for so long. Also, I was struggling much more with my health and it was becoming apparent that I am more dependent on him as I couldn't work full-time anymore. Doctors appointments became less and less hopeful and our relationship suffered.
Many things became apparent as we worked through things slowly:
1) we love each other
2) we made VOWS not only to each other, but to our Lord and Savior
3) we were going to fight for our marriage and for our family, priorities would change and we would focus on "us" rather than the swirling of "things" happening around us
4) we had a much different support system in place than we ever had before- our friends when we were "young and in love" were not the same friends that had supported us through some of the most trying of times in our marriage and health
5) we are so thankful for the broken road that has led us to the fruits we have today
A few things became apparent this week, some rudely, and some more subtle, so here are the questions and answers in case you are all inquiring:
1) Even though you are moving to Hays, are you really still going to have the vow renewal?
Uhm . . . yeh. Excuse my sarcasm, but we have planned this since the spring and already paid for our venue, DJ, outfits, and many of the decorations. This had been in the planning since before we knew my cousin was getting married the very next day. Why is it unthinkable to drive back from Hays (2 hours) to celebrate our love and renew our vows before our closest family and friends!? If you have a problem, consider yourself relieved of having to attend.
2) Why would you still have your vow renewal scheduled when your cousin is getting married the next day?
Hmmm . . . I don't know- can we not do something on our OWN and we would NEVER ask anyone to choose. By all means- I would ask that you be there for HIM if you did feel you had to choose! I'm just offended that you would think I was trying to over-rule or take that special day away from him. :( Shame!
3) Why spend so much money on a vow renewal when you are trying to get out of debt and now having to move and sell the house?
Well . . as stated above, this was planned well in advance of the news of the move, etc. We actually used money from our tax return to pay for the venue, outfits, DJ, and invitation pictures. With most of that taken care of back in FEBRUARY, we just have the last minute expenses of decorations and some simple catering.
4) Are you expecting gifts or money, is that why you are doing this?
This has to be the most offending question!!!! We are doing this for the sole purpose of renewing our vows. In fact, that is the hardest part of the whole planning is trying to think of a wording that actually gets a point across that we do NOT want gifts besides prayer and support for another blessed 10+ years! Right now, I'm open to suggestions, but some have suggested that we mark a charity for any contributions to be made to????
5) WHY?
Do you know that most people don't even remember their wedding vows, let alone repeat them in front of people ever again after their wedding. We feel like with the health that I've had and the prognosis as well as the trials we have been through, we need/want a reason to celebrate and THANK the people that are a blessing in our lives right now. We have so many family and friends right now that have helped us stay together and be a stronger couple. I have friends that are more of Christian sisters than the surface-level Facebook kind of friends that sometimes we don't even really know.
I want a day to rejoice for all we have been through- and its been a LOT. We conquered hatred, an early pregnancy, a sick baby, losing a job, moving, losing loved ones, and my ailing health. We have so many things to rejoice and celebrate such as our beautiful family, our blessings of friends, the marriage that God has given us and renewed in us. God has blessed us beyond what we deserve and we want to celebrate that with the people that have been with us the last few years to help us and watch this.
That being said, it is hurtful to know that there are many family (especially) and friends that are against us having our vow renewal. I know it is not something that is precedented in our family that I can remember. Maybe its not the traditional way of doing things. I've never had a drink at my wedding. Believe it or not- Shawn and I have NEVER shared a dance in the almost 10 years we have been married and I wanted this to be OUR dance. Not that we didn't have opportunities- but each wedding dance we attended it seems like one of us was dealing with kids or tired. :(
Another reason we feel so special is because this is our 10th Anniversary on August 10th and in case you missed it, but we try to celebrate the 10th of EVERY month with something special for our "anniversary". This year we feel is EXTRA special not just because of the special number 10, but because we have been reminded too many times over the past few years how incredibly short and special our life is. I don't know what else to do to have to rationalize or explain it to people that I would have thought would have been excited about this for us. Our kids are extremely excited for the party and we also thought it is a good time to say "see-you-laters" to our Riley friends.
Somehow, I don't really remember planning my first wedding but I remember how perfect it was. I know that Shawn and I worked about 5 jobs that summer between the two of us and we were determined to get married to live together. . . although we couldn't get married as soon as we would have preferred. I'm just tired of trying to defend this. So, if you'd like to be a naysayer. . . please just keep it to YOURSELF (not even sharing with my family!) and just maybe be happy for us that we have this happiness in our lives. You certainly do not have to attend or support us. We know our true supporters and that most of all is the Lord in whom we glorify and thank for this time.
Many things became apparent as we worked through things slowly:
1) we love each other
2) we made VOWS not only to each other, but to our Lord and Savior
3) we were going to fight for our marriage and for our family, priorities would change and we would focus on "us" rather than the swirling of "things" happening around us
4) we had a much different support system in place than we ever had before- our friends when we were "young and in love" were not the same friends that had supported us through some of the most trying of times in our marriage and health
5) we are so thankful for the broken road that has led us to the fruits we have today
A few things became apparent this week, some rudely, and some more subtle, so here are the questions and answers in case you are all inquiring:
1) Even though you are moving to Hays, are you really still going to have the vow renewal?
Uhm . . . yeh. Excuse my sarcasm, but we have planned this since the spring and already paid for our venue, DJ, outfits, and many of the decorations. This had been in the planning since before we knew my cousin was getting married the very next day. Why is it unthinkable to drive back from Hays (2 hours) to celebrate our love and renew our vows before our closest family and friends!? If you have a problem, consider yourself relieved of having to attend.
2) Why would you still have your vow renewal scheduled when your cousin is getting married the next day?
Hmmm . . . I don't know- can we not do something on our OWN and we would NEVER ask anyone to choose. By all means- I would ask that you be there for HIM if you did feel you had to choose! I'm just offended that you would think I was trying to over-rule or take that special day away from him. :( Shame!
3) Why spend so much money on a vow renewal when you are trying to get out of debt and now having to move and sell the house?
Well . . as stated above, this was planned well in advance of the news of the move, etc. We actually used money from our tax return to pay for the venue, outfits, DJ, and invitation pictures. With most of that taken care of back in FEBRUARY, we just have the last minute expenses of decorations and some simple catering.
4) Are you expecting gifts or money, is that why you are doing this?
This has to be the most offending question!!!! We are doing this for the sole purpose of renewing our vows. In fact, that is the hardest part of the whole planning is trying to think of a wording that actually gets a point across that we do NOT want gifts besides prayer and support for another blessed 10+ years! Right now, I'm open to suggestions, but some have suggested that we mark a charity for any contributions to be made to????
5) WHY?
Do you know that most people don't even remember their wedding vows, let alone repeat them in front of people ever again after their wedding. We feel like with the health that I've had and the prognosis as well as the trials we have been through, we need/want a reason to celebrate and THANK the people that are a blessing in our lives right now. We have so many family and friends right now that have helped us stay together and be a stronger couple. I have friends that are more of Christian sisters than the surface-level Facebook kind of friends that sometimes we don't even really know.
I want a day to rejoice for all we have been through- and its been a LOT. We conquered hatred, an early pregnancy, a sick baby, losing a job, moving, losing loved ones, and my ailing health. We have so many things to rejoice and celebrate such as our beautiful family, our blessings of friends, the marriage that God has given us and renewed in us. God has blessed us beyond what we deserve and we want to celebrate that with the people that have been with us the last few years to help us and watch this.
That being said, it is hurtful to know that there are many family (especially) and friends that are against us having our vow renewal. I know it is not something that is precedented in our family that I can remember. Maybe its not the traditional way of doing things. I've never had a drink at my wedding. Believe it or not- Shawn and I have NEVER shared a dance in the almost 10 years we have been married and I wanted this to be OUR dance. Not that we didn't have opportunities- but each wedding dance we attended it seems like one of us was dealing with kids or tired. :(
Another reason we feel so special is because this is our 10th Anniversary on August 10th and in case you missed it, but we try to celebrate the 10th of EVERY month with something special for our "anniversary". This year we feel is EXTRA special not just because of the special number 10, but because we have been reminded too many times over the past few years how incredibly short and special our life is. I don't know what else to do to have to rationalize or explain it to people that I would have thought would have been excited about this for us. Our kids are extremely excited for the party and we also thought it is a good time to say "see-you-laters" to our Riley friends.
Somehow, I don't really remember planning my first wedding but I remember how perfect it was. I know that Shawn and I worked about 5 jobs that summer between the two of us and we were determined to get married to live together. . . although we couldn't get married as soon as we would have preferred. I'm just tired of trying to defend this. So, if you'd like to be a naysayer. . . please just keep it to YOURSELF (not even sharing with my family!) and just maybe be happy for us that we have this happiness in our lives. You certainly do not have to attend or support us. We know our true supporters and that most of all is the Lord in whom we glorify and thank for this time.
Baseball Summer 2012
We are still trying to sell our house! We keep doing a lot of work to it and it is making it harder to move out. However, each day more boxes get taken to the garage and we are slowly moving out. Its so hard to believe that its been less than a month for all this change to come about! Shawn LOVES his new job and we are incredibly thankful for that!
This summer, the Riley ball association did not have a team for Zach to be on, so only Logan and Malachi are playing. We had Logan's game Tuesday night. He is the tiniest little kid on the team but he got a hit each time (coach pitch) and he slid at every base. :) He was cheerful and kind to his teammates and did a great job. I'm so proud of him. He is #1 on his shirt and he likes to let everyone know about it. 
Malachi packed cows and tractors for Logan's game night. Thankfully, he shared with the other kids. He was kind enough to pull some dry weeds (hay) for his cows. 
Malachi had his 1st ever baseball game on Thursday. He did a good job for it being his first game. 
He had a little bit of trouble paying attention. Most of the time he was sitting or following the coach around telling him stories. I wish I would have taken pictures of that too. :( 
He smiled through most of the game, especially the end when they handed out the snacks and drinks! :) 
This summer, the Riley ball association did not have a team for Zach to be on, so only Logan and Malachi are playing. We had Logan's game Tuesday night. He is the tiniest little kid on the team but he got a hit each time (coach pitch) and he slid at every base. :) He was cheerful and kind to his teammates and did a great job. I'm so proud of him. He is #1 on his shirt and he likes to let everyone know about it. 
Malachi packed cows and tractors for Logan's game night. Thankfully, he shared with the other kids. He was kind enough to pull some dry weeds (hay) for his cows. 
Malachi had his 1st ever baseball game on Thursday. He did a good job for it being his first game. 
He had a little bit of trouble paying attention. Most of the time he was sitting or following the coach around telling him stories. I wish I would have taken pictures of that too. :( 
He smiled through most of the game, especially the end when they handed out the snacks and drinks! :) 
Monday, June 4, 2012
Where is Hays?
Moving
We have been in a whirlwind that past few weeks. There has been so much happening that it's hard to catch up. I resolve to be a better blogger and then fall so far behind. I need to just start sending the pics and commentary from my phone. Here is our moving story:
We had been praying for quite some time about my job situation. With my health, it was getting worse, for many reasons related to some of the decisions made about me. I was being bullied and harrassed. Also, as I asked for accommodations regarding my health, they never allowed them. This was the second year "fighting" for some help and UNDERSTANDING. Last year, I took my entire classroom home in prayer that I may have a miracle and be relieved of the stress by finding a different position. As summer came to a close it was evident that I would maintain the same position which I truly loved.
This year however, I was punished for attending professional development and bettering myself as an educator. This is something that was entirely new to me and I know it wasn't the "true" reason that things happened. I am a VERY good teacher and my students made amazing progress this year, despite my absenses. I was told that since I was gone so much "professionally" that I would have to be placed in a regular classroom this fall (which everyone knows would be MUCH more taxing and worse for my health at this current time). Finally, even into the last week of school, I was never told a definite position even though all my coworkers were given their positions for planning for the year to come. It was at this time that I decided that I had to be done. I remembered the great days at my job, walking the halls to pick up my students and in disbelief that I got paid for one of the best jobs I could have. I loved what I did and most of all I loved the students I worked with. I had some great coworkers too that really helped and make my job fun.
Amazingly, God works in such incredible ways. Shawn was told to apply for a position for being a pharmacy supervisor in Hays, KS. He talked to me first because he knew that moving (especially to western KS) was not something I wanted to do. I did really want to teach, but was searching for a different location. Shawn submitted his application, the next week we were told that HR had offered it to someone a little more qualified. Since it was a last-minute impulse to apply, we were ok with that decision and settled back in with the daily routines. Then. . . Shawn was called and told that the person did not accept the job because it wasn't a high enough salary. They wanted to interview him and told him that it would "not be a waste of his time." :)
Shawn interviewed and he was told to think about what salary would be acceptable. We discussed things that night at home about a bottom dollar that we could live on without me working full-time. The next day, HR offered him the position and even offered him MORE than what we thought they would and MORE than we were expecting! It was amazing. So . . . with that news- in the middle of May, we took that weekend to house-hunt in Hays. The boys loved it. They thought we were living at the hotel since it had a fun water slide. :)
We did find a house for rent in Hays. Its about the same size as ours right now so has plenty of living room for our family. We also put our house here in Riley on the market to sell- hopefully FAST. I'm really excited to be relieved of the stress. I also am grateful for the MANY blessings that God is sending our way. Shawn started his job last week and he LOVES it. It will finally allow me to be in my kids' lives and help at their schools. I can do some of the same stuff that I was doing but just on my own time and for people that appreciate it! I am stoked to be moving. . . even if it is to western KS. We have met so many neat people and are getting stuff ready to get out there to settle down before school starts.
Right now, things are bittersweet. I am VERY excited to start the new adventure in our lives. Also, I am very sad to leave so many of my friends and family behind. The space isn't immense but it is definitely much more than we have now. I am excited to be in my kids' lives more and have a legacy with them that doesn't include "mom's too busy teaching, so she can't come to that field trip." :( In the seven years that I taught, about 99% of MY days off consisted of illness of either myself of the kids. :( I never took a personal day to enjoy a day off doing something spectacular. I don't have any regrets as I move forward. We are moving forward in excitement for the positive things to come.
We had been praying for quite some time about my job situation. With my health, it was getting worse, for many reasons related to some of the decisions made about me. I was being bullied and harrassed. Also, as I asked for accommodations regarding my health, they never allowed them. This was the second year "fighting" for some help and UNDERSTANDING. Last year, I took my entire classroom home in prayer that I may have a miracle and be relieved of the stress by finding a different position. As summer came to a close it was evident that I would maintain the same position which I truly loved.
This year however, I was punished for attending professional development and bettering myself as an educator. This is something that was entirely new to me and I know it wasn't the "true" reason that things happened. I am a VERY good teacher and my students made amazing progress this year, despite my absenses. I was told that since I was gone so much "professionally" that I would have to be placed in a regular classroom this fall (which everyone knows would be MUCH more taxing and worse for my health at this current time). Finally, even into the last week of school, I was never told a definite position even though all my coworkers were given their positions for planning for the year to come. It was at this time that I decided that I had to be done. I remembered the great days at my job, walking the halls to pick up my students and in disbelief that I got paid for one of the best jobs I could have. I loved what I did and most of all I loved the students I worked with. I had some great coworkers too that really helped and make my job fun.
Amazingly, God works in such incredible ways. Shawn was told to apply for a position for being a pharmacy supervisor in Hays, KS. He talked to me first because he knew that moving (especially to western KS) was not something I wanted to do. I did really want to teach, but was searching for a different location. Shawn submitted his application, the next week we were told that HR had offered it to someone a little more qualified. Since it was a last-minute impulse to apply, we were ok with that decision and settled back in with the daily routines. Then. . . Shawn was called and told that the person did not accept the job because it wasn't a high enough salary. They wanted to interview him and told him that it would "not be a waste of his time." :)
Shawn interviewed and he was told to think about what salary would be acceptable. We discussed things that night at home about a bottom dollar that we could live on without me working full-time. The next day, HR offered him the position and even offered him MORE than what we thought they would and MORE than we were expecting! It was amazing. So . . . with that news- in the middle of May, we took that weekend to house-hunt in Hays. The boys loved it. They thought we were living at the hotel since it had a fun water slide. :)
We did find a house for rent in Hays. Its about the same size as ours right now so has plenty of living room for our family. We also put our house here in Riley on the market to sell- hopefully FAST. I'm really excited to be relieved of the stress. I also am grateful for the MANY blessings that God is sending our way. Shawn started his job last week and he LOVES it. It will finally allow me to be in my kids' lives and help at their schools. I can do some of the same stuff that I was doing but just on my own time and for people that appreciate it! I am stoked to be moving. . . even if it is to western KS. We have met so many neat people and are getting stuff ready to get out there to settle down before school starts.
Right now, things are bittersweet. I am VERY excited to start the new adventure in our lives. Also, I am very sad to leave so many of my friends and family behind. The space isn't immense but it is definitely much more than we have now. I am excited to be in my kids' lives more and have a legacy with them that doesn't include "mom's too busy teaching, so she can't come to that field trip." :( In the seven years that I taught, about 99% of MY days off consisted of illness of either myself of the kids. :( I never took a personal day to enjoy a day off doing something spectacular. I don't have any regrets as I move forward. We are moving forward in excitement for the positive things to come.
Subscribe to:
Posts (Atom)