A Great Day!!!

Today started out with anger again. I try so hard to wake up positive but I feel so awful in the morning for sure. I also knew I had a bunch of stuff that I wanted to do today and was praying I could have strength. I've been so frustrated with how "cluttered" my house has gotten. Its a disaster, which makes it stressful and hard for me to rest as easily.

It's been a LONG LONG LONG week. We got some great news and have also been waiting on so much. God has definitely been blessing me for learning how to trust Him and His timing. I am getting better at that through the experiences He's provided. I don't necessarily worry as much anymore. I joke that I am just to exhausted to worry, but honestly, I feel very much at peace with what will be. God is good- ALL the time!

Last Wednesday, (the day before Thanksgiving) I was told that I had an infection that was highly aggressive and most likely cervical cancer. I really felt like Satan was trying to hit me low. I have NO idea where this virus came from. It has NEVER been positive on any of the previous tests I've had all the previous years, but for some reason my immune system decided to let it take over, thus it was progressing and changing into cancer cells. The doctor did a biopsy on Monday afternoon and told me that we'd get the results Wednesday or Thursday. She was pretty positive that things were caught early enough that we could remove the tissues that were affecting me and pray that it didn't continue to progress.

I felt ashamed, embarrassed, frustrated, and mad. I cried almost all day Wednesday. I had so many questions and frustrations. This was ONE more thing to deal with. I was certainly mad about that. I also knew that Satan was trying to take the most powerful fight I had against such worry or healing- and that was prayer. Because if I asked for prayer, I would feel the need to explain what it was for and how could I do that when I felt so ashamed. Then I realized after talking to a few people that this was not as rare as I was led to feel and that I was NOT alone. I asked for prayers. I trusted that God would give me strength. Finally, today, I got great news- the tissues that were removed were a low grade cin 1 displacia (sp) and so we will just monitor it for the next few months and pray that my immune system will kick in to fight the rest of the infection off.

Yesterday, we met with one of the best cardio surgeons in the state (some think in the country). He is very busy and I was scheduled pretty much on top of other patients, as a courtesy of my doctor here in Hays. I appreciate that so much as the doctor here really does not know me or the struggles that I have dealt with the last few years, but he did understand the exhaustion I have from the tachycardia. I was told that surgeries were scheduled past the new year and so was just holding out hope that I could manage yet another holiday season with this low amount of energy. Thankfully, the cardiologist didn't drill me about everything I've been through. He knew what my doctor here had talked to him about and was ready to help me feel better. He also thought it would be a good idea to get me in as soon as possible and so in about 2 weeks, I will have a possible new lease on an energetic life! I can't even imagine right now how much better I could feel. While I know and understand that it's not a cure, since it is fixing just ONE of the multiple symptoms, I know that it could be monumental in helping me feel better and being a better wife, mom, and friend.

I would ask for prayers though that it does not have adverse side effects. This is a last resort effort for patients with POTS and has not been used highly because it is not my heart that is a problem- it's the autonomic nervous system. Some have had the pacemaker placed and have had worse symptoms in other areas because their heart is not able to overcompensate for the lack of functioning of the ANS. (confusing maybe) I'm holding out hope and have faith that I'll be a lucky one that it will work for and give me some much needed stamina to be on my feet more during the day.

Tonight, my friends were in Hays and we got together. . . at one of our favorite places, the museum! :) I was so excited to end a day of good news with them and to have hugs and laughs. I miss my girls and my kids missed their friends.

In case you're my mom and didn't read this post, but rather looked at the pictures, you can always call for an update. This is my journal for my family. Thank you for the prayers!

Chance Family Thanksgiving 2012

With how I've been feeling this year, we decided to keep Thanksgiving a little more low-key than previous years. We used to travel across the state and back, eating, packing, unpacking, traveling, battling tired and restless kids, and doing it over again for several days. It was EXHAUSTING for a normal, healthy family, but with me being pretty helpless this year, we decided to just travel a little north to Shawn's grandma's Thanksgiving/Christmas celebration. It's been a tradition and I know how special grandparents are. I sure do miss mine and I know how special they have been to Shawn.
The boys also really enjoy seeing their cousins, second cousins. . . and other relatives. Thankfully the weather cooperates for the most part and its beautiful for the kids to rumble and tumble around outside. I've given up trying to dress my boys up. It always would end in a disaster and me frustrated over expensive clothes ruined, so now we just dress casual and we all enjoy the celebration much more! :)
 
I REALLY was not feeling well so I looked accordingly, but still wanted to show my boys that I was there with them. I kinda hung back like a fly on the wall and didn't socialize much as I just felt awful- like I'd been hit by a train.

We attempted a family picture. Do you see how I've completely let my OCD go and not tried to match our outfits!? :)


Logan LOVES Courtney, ever since she lived in Manhattan, he has really had a special fondness for her.

Malachi quickly emptied his tic tacs from grandma and filled it with dead (and a few live) bugs. YUCK!!!!

I will try to add more pictures tomorrow. Photobucket has been sooo super slow that it has been difficult to get the html codes for the links. :( Tomorrow Zach has a check up for his sore toe and I should be getting news about my upcoming procedures. I am not as nervous as I was the other day. I feel a calm, comfort, and peace that only God could give me. Thanks for the prayers and words of encouragement. Day by day . . . .

Happy Thanksgiving 2012

Raw

This post doesn't have cheery pictures. In fact, it might not be at all comprehensible unless you can my sense of my vagueness on here. While I want to disclose some items, I also need to maintain some privacy in respect for my family. I'm also not a "hide the dirty laundry" type of person because I'm REAL and things in my life are REAL. I am also terrible at sugar coating the facts.

This morning I woke up to a phone call. Immediately when I saw who it was, I put it on silent. I also knew deep down why they were calling. It was the doctor's office. . . . that I visited a few weeks ago. . . and I never got my results yet. (but had forgotten to even think twice) I'd put off the appointment much too long. It was odd on the voicemail that the doctor had called and not the phone nurse. The voicemail was brief. . . yada, yada, yada, test results, call back soon, yada, yada, yada.

Not wanting to miss the doctor before she left, I called right away and woke up Shawn so he could listen as well. I have a TERRIBLE case of not remembering what all doctors tell me so it is so helpful to have Shawn listen and be with me at appointments. (I completely understand why older people take their kids with them now!)

Words shattered my world. . .

"abnormal"

"highly aggressive"

"need more biopsies"

"no worries until we know more" (yeh right!) :(

"we will call you back on Monday"

I asked the only question I could think of at the time. . . . "How?????"

"We can answer more when we know more."

More tests. . . more procedures. . . also, should results come back as feared, the pacemaker and hopes of fixing other symptoms of my POTS would be entirely out of the question. This is terrifying for me.

As Shawn rested today, I searched the internet, looking for hopeful information from the reputable health websites (gov and cdc and mayo) that I trust the information. The information was more dreary than I'd expected and I broke into tears. This is something almost completely out of the blue. It feels as if the devil is trying to attack me like he did to Job. It rocked my faith as I've struggled today to ask "why? how? really!?"

I pray it is all a nightmare. I pray they called the wrong number. I asked Shawn several times today to tell me again what the doctor said because maybe I didn't hear it correctly. He also tried to reassure me by finding positive information and couldn't. I just know I'm drained, but thankfully I have some strong friends that are supporting me in words of encouragement right now.

Tomorrow we celebrate Thanksgiving and I feel so amazingly thankful for what I do have. While I did throw a pity-party for most of the day today, I know that many are fighting much more difficult battles and some are even fighting those battles without the knowledge of the comfort God can provide. I'm thankful for more things than I can even fathom to name and tonight I'm finally at peace with things that what will be, will be and it's not in my hands. Once again, God is teaching me that He is in control.

Chimichungas

We love cooking together. . . or maybe I do a few things while Shawn cooks. I don't have the endurance to stand and cook like I used to. We used to have get togethers so often and had around 50 people to feed so we started to get creative with our menu. Last night, Shawn made chimichungas - one of his crowd pleasers from back home. The recipe is quite simple. I also made some chicken queso to go with it. I might say that this was a real hit with the chimis which we hadn't ever tried together before. :)

Brown however much hamburger meat you want with your meal. We put some spices in it and a few onions for flavor. Once it is browned, set it to the side for the assembly line of making the chimichungas.  

 Add Crisco to the frying pan and let it get melted into liquid.

 Yummy. (jk)

 You'll fry the chimichunga after its all wrapped up. Sorry, my blog uploaded the pics in a weird order.

On a tortilla shell, add refried beans, 

 Velveeta cheese

 and the browned hamburger:

 Wrap it up as secure as possible so it doesn't fall apart when frying:

 After they are fried, they are ready to eat. We add shredded lettuce, diced tomatoes, sour cream and picante sauce to the top of them. Last night, we even tried pouring some queso over them and it tasted DELICIOUS!!!!

I hope I didn't leave anything else. Chimichungas are Shawn's dish to make, so I was just watching and taking notes. :) Have a fabulous weekend!

Autographs & Dr Updates

Tonight they had an autograph session for the Fort Hays State basketball teams. Since our babysitter is one of the seniors on the women's team, we HAD to go- my boys absolutely adore her.


Malachi was too shy to get a picture with the Tiger, but Zachary and Logan did.

Here is Kelsie with the boys. They get so excited when they see her. She's been a god-send in our lives.

Today, we had 2 important doctor appointments. First of all, Shawn's doctor appointment at the dermatologist went well. He previously had stage 2 (out of 10) of precancerous cell tissue. That was the long scar on his back. This recent procedure came back completely clear of abnormalities. PRAISE THE LORD!!!!

My cardiologist appointment went as well as could be expected. I pass/failed my heart monitor test. Passed meaning, it showed the true condition of my heart which means it failed to show good functioning. It is beating too high and thus I'm bed ridden most of the day except for a few choice hours. He said since I have been through this for several years now and its continuously getting worse, its obvious my heart is not handling it well and a pace maker would be the next/final course of action. He is going to refer me to KU med to advise with them and see if they also think the surgery would be helpful or would give me quality of life back. I'm just trying to pray that God would direct us in the best route toward health or healing.

Halloween and Hanging in There

This has been a lazy weekend. We have had a lot of rest time and family time. Maybe I'm just saying that because I have a great case of brain fog right now and I can't even remember the events of today, but I know we most likely had a terrific weekend! :)

Zach loves a good game of chess. Skins beat shirts in this game I think.

My newest nephew Liam. I love the little stinker and haven't been able to meet him yet. He lives in MO so its a long trip for me to get there.

Halloween isn't exactly my favorite holiday. In fact, its almost my least favorite holiday. I hate listening to the numbers of money spent on CANDY and (in my opinion) foolish things. My heart burden is for the hungry in other countries and I hope to be able to put a sign on my door someday that explains why I'm not handing out candy.

Malachi talked to the Chuckwallas last week at the museum. I think this one was making a desparate plea to escape but it was awful cute! :)

The staff at the museum is always so helpful, informative, and kind. I just love chatting with them and learning more about the museum and the people that work there. I hope to be able to donate toward there if not when we are out of debt but for a memorial someday.

We made it to church on time today. . . barely. I love the church we go to. They are so friendly and kind. I wish I knew more of the people there. I don't feel like we have very many friends here and I wish I could be excited to see some people at church. The pastor and his wife are amazing people and great inspirations. I feel like I ask them a kagillion questions. The sermons are moving and motivating and convicting. I love having the spiritual conversations with Shawn that we used to have before we hit a dry spot in our journey with God.

I'm incredibly homesick. Yet really this is my home. I know there is a reason we are here. . . by ourselves . . . to grow. God has the most perfect plans and we'll know the reasons and perfectness eventually. Just in the present it is frustrating and discouraging.

A few prayer requests for this week. We will get the biopsy results for Shawn tomorrow morning. PLEASE pray that they are non cancerous unlike the previous ones that he had removed a few years ago. He'll get the stitches out tomorrow too. I think he's been itching to get the done (pun intended).

Tomorrow afternoon, I have another appointment with the cardiologist. I'm not entirely sure what it will be for so we shall just pray that maybe he will provide some answers or a direction as to what we can do. I feel helpless and vulnerable at this point and I wish I had more strength to figure out what to do.

Wednesday evening, Zach has an important appointment from his follow-up in the hospital last week. :( Because of my illness, he has been having a VERY difficult time so we are hoping Wednesday will be a turning point in this and will also give us a positive outlook and answers.

Friday, we have a few doctors appointments back at home. There are some major decisions to be made and I am praying for discernment about them. The traveling will more than likely be exhausting and so I pray for strength and endurance.

Here's to having a great Monday tomorrow! :)

How Tachy!

A "normal" person's heart beats around 60-80 bpm with the higher of normal being around 80-100bpm. Anything over 100beats per minute is called tachycardia. It's all relative, in a sense. It depends on the conditioning of a person's muscles (especially the heart muscle) and the exertion of what they are doing.

This being said, I am was a runner for so many years. I will want to run again. It is my stress relief when everything else around me is chaotic, especially my health, I want to control something. It used to be food. I was anorexic for many years (a LONG time ago). I have recovered so well from that in fact that I don't think I could bare life without food, but honestly, if you know the true psychology behind an eating disorder, it's really NOT about food as much as it is CONTROL.

This morning I was upset. I am tired of waking up so sick every stinkin morning! I am so nauseous and that makes me grouchy, irritable, and not a happy camper. I'm intolerant of little children that want to be sluggish to get ready for school and overall, I'm not the mom I want to be. It breaks my heart. I fight against it with all my will-power, which when I'm physically sick is not much. :( I try so hard to stay out of bed and upright that I have finally realized that I do so in order to prove that I'm not lazy!

I'm such a person that worries about what others think- not necessarily strangers, but my closest friends and family. I worry that they might not think I'm doing enough or that I fight hard enough to overcome my weaknesses. As I was running this morning, my heart hurt so bad and I felt like I deserved that pain. I needed to endure and tomorrow I could run further and would be better conditioned. This goes against a LOT of the research about Chronic Fatigue Syndrome (what I have secondary to the POTS). I know better. I'm an educated person, but I just pray and hope that God would take this illness from me. I do not know the purpose of my days often. I wake up ANGRY and bitter about the fact that I'm not cured. I fight that so hard and try to praise God for giving me yet another day despite how bitter I feel. He gives me yet another day to love my family and learn how to better rely on Him to be my strength in my moments of weakness.

This is where the brain fog is hitting. I feel like I'm mumbling and typing jitterish, so I'll try to post some fun pictures later of the boys. After all, this is a blog about them- and the memories they are creating!

Football in Fabulous Weather

The weather has been fabulous the past few days. It truly is such a beautiful blessing from God to enjoy the seasons. Much as we gripe and complain about the awful extremes during summer and winter, it it the reprives during the fall and spring (my fav season) that are something I would miss so much if we lived elsewhere. Last night, the boys pulled together some last minute costumes (I'm not a huge Halloween fan) and they treked through some neighborhoods for trick or treating. After my melt-down (see yesterday's post), I pulled myself together and rode along in the van while Shawn drove and the boys had a blast walking to the different houses. Sometimes we make memories in ways we didn't think we could.

Today was a little bit better. I did rest more and also have been trying to keep the itchiness under control since the hives are spreading up my neck now. :( Shawn has an appointment tomorrow morning at the dermatologist so we are eagerly awaiting the test results. He had pre-cancerous cells a few years back and the surgery hurt him so much and they took so much of a chunk out of his back that he decided to not go back for regular skin checks. About 2 months ago, a spot that looked familiar and was in the same vicinity as the previous surgery "popped up" and was itchy and bothering him a lot. So, I had him go in and sure enough- they took it to send in to the lab. We are praying that it comes back clear and they do not have to dig deeper to get any more of it out.

Tonight, I enjoyed watching the boys play some football and tackle in the front yard. We miss a lot about our former house, but it is nice to have a little bit of room for them to run and play.  I love watching the smiles and the orneriness of them. Shawn has a blast with his boys. I'm thankful for the opportunity to be an observer in this.

Today, I did a LOT of researching about pacemakers, especially in patients that have the same syndrome that I have (POTS). There are both sides represented which makes it so difficult to weigh the options. One of the most difficult options right now seems to be the money. Shawn and I did the typical college thing back 10 years ago and took out student loans (as well as worked full-time) and also took out credit cards. We are within about a year of paying that off since we sold our house in Riley and also have been trying hard to live on 1/2 of Shawn's paycheck. I really do despise money. I think that if we were "rich" with money, I'd still like to live with the same lifestyle. I love hearing of secret millionaires that have used their money for purposes to serve others anonymously.

Well, from research and studying today during my resting times, I realized that an average pacemaker surgery is about $70K+-. This would not include the additional travel and doctors appointments to monitor or set it. It also does not account for the fact that most pacemakers (that I studied that are most appropriate for POTS patients) need to be replaced every 6-7 years or so. With me being 30 and suggesting I could live to about 70 years (hopefully!), that is a LOT of surgeries and maitenence! While some people say you can't put a price tag on health- I mainly said that when Logan was very sick and I'd give ANYTHING to make him feel better. I have a VERY selfish feeling about this. I can't rationalize spending this amount of money every few years on a slight chance that it will help. It is a HUGE risk!

At the church we've been attending, they have been talking about God-burdens and what it is that really touches our heart and makes us want to help others- good burdens in a sense. My God burden has quite obviously been to bless others that are less fortunate. I usually focus on children in other countries through the company World Vision, but I also look at the local community as well and try to donate money toward missions and people. That is where I want to make a difference.

I feel SOOOO selfish at the thought of spending sooo much on myself to "possibly" help one symptom of the MANY that accompany this condition. I've been seeking God's guidance and will discuss it furthur with the cardiologist on Monday. I'd much rather use that money to make a difference in the world by helping others.