What Do You See?

 

They used to be photographs. Photographs that you didn’t instantly see, having to wait until your film was developed to see if you hair was perfect or your eyes weren’t closed. Once you did get your photographs, you were gifted with memories on each 3X5 glossed card. Candid moments were caught, and even posed ones couldn’t be guaranteed perfect. My favorite part was that I had these snapshots of time in a physical form, that I could touch, display, put in a book, and even destroy if mood dictated. Of course technology came along  improved photography and did what technology always does and ultimately destroyed photographs. Photographs do not exist anymore. Pics, snaps, selfies, whatever you want to call them, those images that exist almost extensively in the digital world that are manipulated before they are even taken, are all that we are left with.

Yes the time has came, I am old and now get to complain about things I miss. Also I don’t hate pictures as they are now, I just am blathering on about the parts I miss.

It is said a picture is worth a thousand words. This is true. What I want to know is how do I know what words in the picture are authentic? Social media has given us the ability to showcase only the best. There are those that get stuck trying to prove how perfect they are, how perfect their lives are. No one is perfect. You have flaws, its cool, we all do. Because social media traps so many, I wonder everyday while looking at my friends posts, what does the picture say? Are you feeling self conscious, insecure, need someone to tell you how amazingly beautiful you are?  Are you doubting your ability to parent, you are emotionally exhausted and you wonder if you can keep going until bedtime? Are you filled to the brim with love for someone and are so grateful they are in your life? What is going on in your life? Are you just posting a picture of yourself that looks as if it took 200 tries and you just got out of the salon because you love the way it looks? Are all those pictures of your littles just because?

 

As I am the one sharing the pics, lets focus on me and mine. What words do you see in these 2 pictures? What is going on? I see my husband and I taking a selfie. We are at a Utah game. There is some dude in the background, in what is called “a reverse photo bomb” In both pictures my eyes look like they are half closed or something. My hair is getting long. I am not sure what else you would see. Do you see that it is at the Arizona State game? Do you see that it was our first home game this season during the day? Do you see it was the 3rd home game I have been to, having missed the Stanford one for our son’s birthday? Do you see that this is before the game is over and that we lost? If I would have posted this on Facebook that day you probably could have figured all that out. Aside from my weird half closed eyes, I really like these 2 pictures. However when I look at them the words I see are; anguish, despair, loss, terrified, sadness, shame, fail.

I see those words because I lived them. Like I said this was the 3rd home game I attended, this year we were scheduled to have 7. I can’t speculate on how many I will end up at when the season is finished.

*I need to stop here to address that I have not updated this blog for quite some time, so some of the symptoms and such may be unnerving. I promise I will give a full medical update soon* 

I have always said going to these games were that one thing. The one thing I could hold on to. They took a lot out of me but with the help of the game day adrenaline and my day after recovery, I looked forward to every game. I can no longer say that is true. The first game I thought I was just out of practice. I had trouble riding Trax, walking was laborious, I was visibly in pain. Game 2 was more of the same but I had my football buddy Peyton with me. Mark missed I don’t know how many plays getting me more water and tending to Peyton’s whims. In a way having Peyton there made the pain and everything more bearable. I’m used to putting his needs first, and wanting him to have a good time was most important to me. However, as it got later, Peyton got tired and started watching the clock, waiting until it read all zeros so we could leave. The game won and put away long before the 4th quarter, I realized I was watching the clock too. Each game was getting harder to get through, longer to recover from. Away games and the Stanford one, I sat watching with that familiar ache to be there. I wanted to be there, at the games, the tailgates, all of it.

This brings us up to the game where the pics were taken. I hadn’t been to a home game in a month so I thought I was just rusty again when by kick off I was already struggling to do the fan thing. I couldn’t stand long, or without a wobble, the sun made my vision more unfocused than it already was and the pain was beyond hiding. I came prepared, I loaded up with salty snacks, drank as much water as I could get my mouth on, took every medication in my arsenal (as prescribed). I was holding on, the game was entertaining and helped distract from my pain, I limited my standing and the sun was going down. I was gonna do fine.  At half time that illusion ended. Halftime is when I run up to use the girls room. Mark accompanied me up. This 25 minutes were some of the scariest I’ve ever experienced. The pressure in my head and neck was so intense I couldn’t breathe at moments. Walking to the bathroom, pressure not letting up, I was convinced we were going to have to leave the game right then and there. I was headed to the hospital instead of back to row 8. I had made it to the bathrooms, somehow by myself I was standing there in line, then walking to the stall. TMI but all I wanted to do was pee, urinate so that the pressure would ease the tiniest bit. I couldn’t go. My bladder hates me. I had ingested enough fluids to fill a  bathtub but they were staying put. I spent the entire halftime in that stall. When I emerged to collect my husband, still fully loaded, I was ready to tell him I needed to leave. Before I could open my mouth, my stubbornness or the 25 minute rest in a dark quiet stall, led to the slightest increase in strength. I decided leaving wasn’t worth it. I stuck it out. I was miserable, probably mean and scared, but I got through it. Recovery was bad. I had pushed myself too far and I was paying for it.

This led to me staying home from the black out game last Friday. Amazing game to be at, we played phenomenally.  I hate myself for missing it but would have made the same decision no matter. I celebrated having a house during Halloween with my boys that week. I over did it for a normal week, but a game week….. I would have ruined the game for everyone, because I know without a doubt if I would have went last week I would have left in an ambulance. Instead I ate cheese fries in bed and couldn’t manage to stay awake through the entire game. *note-cheese fries are a must during pity parties.

Tomorrow is game day again. We have 2 home games left. I have rested all week. I am petrified. I can’t wait til kick off.

 

 

 

 

 

 

 

 

 

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My Vault of Shame

 

My last shower was 2 days ago. I am still in the clothes I slept in last night, and there is a good chance I will sleep in them tonight too. I have managed to eat a bowl of cereal for breakfast but nothing else. I have spent the day laying in bed, watching T.V and when necessary, referee the boys’ squabbles. Anything else would require too much energy and effort.

 

Above is the start of a post I wrote last week. I wish I could say things are better this week but they aren’t. However, I continue to try, sometimes even making progress. Today I have had 2 square meals, am dressed, and even have a touch of make up on. Yesterday I showered, dressed, left the apartment and made dinner. Feeding my family a home-cooked meal and sitting down at the table with them to eat is something that has happened less than 20 times in the 9 months we have been at this place.

Living in this basement apartment, away from all our friends, without the majority of our belongings and without a yard to play in has greatly influenced my depression. Likewise the lingering issues with the house have had the same effect. The original closing date June 2nd has came and went, the new scheduled closing is tomorrow and once again we will be missing that date. We are still hopeful that things will work out soon but the not knowing, feelings of being in limbo have been excruciating. That all said, the depression doesn’t seem to be plateau like I would expect after being in this same situation for so long. Instead it continues to evolve, intensify, and manifesting in ways I have never experienced before.

Comparing ourselves to others is something we all do, women in particular are conditioned to do so from a very young age.Nothing good comes from it, and even though many of us make it a point not to, every one of us has had those moments when you just can’t help yourself. I didn’t even realize I was doing it until I took a long hard look at why I was suddenly running from people and situations I normally didn’t,  even in my worst bouts of depression….that is until now. Depression is a evil illness and will do whatever it can to extend it’s stay, including convincing you that everyone has it better. Thing is, I can’t be convinced of that. Having an invisible illness (or I guess multiple illnesses) has taught me that no one is spared from having bad days, problems and things I know nothing about. So with the comfort of knowing this, I went about trying to determine what it was I was comparing, why couldn’t I face things, and I figured it out. Two of the comparisons that have been weighing me down the most includes one of my most favorite people and a contributing factor to the isolated feelings I discussed in Solitary Confinement.

My (soon-to-be) sister-in-law, Ashley has always been a safe place for me. We get along, I have never felt uncomfortable around her and she is someone whom I know I can trust with anything. Furthermore, in bad times I know she wont take more than I can give. Yet I found myself pulling away, not even going for a visit to see my nephew. I couldn’t face her, and once I realized that, the reason quickly hit me. Shame. Not for avoiding her, although I do feel bad about that. Shame because she is what I could never be. Ashley is amazing y’all. She is kind, smart, beautiful and she is a spectacular stay at home mom/housewife. She gets up every morning and makes my brother breakfast, she irons his shirts, cleans, cooks and is raising her son like an expert. Ever since Scott was born, that was my dream. The first day Mark went back to work I even made him a lunch early that morning when I got up to nurse, however that was the only time. I could blame it on the Chiari, but the truth is I am not housewife martial, no matter how much I wish I was. I didn’t realize how much shame I was carrying around about not giving my family what they deserve until I saw Ashley give her family that. I am not jealous of Ashley (except for the fact that she can exercise, as I am of anyone that can) I am genuinely happy for her. The shame is on me, all on me, to carry or to figure out how to eliminate.

Shame has also came up in going places. It isn’t just my depression keeping me in my dungeon of an apartment. I am paralyzed with fear of running into someone I know. Someone that will surely ask about the house, or my health. People that have moved into their dream homes, people that have their own health issues they are struggling with or overcoming. Our lives are completely different, even though we have similarities, we are not facing the same set of circumstances, yet I can not help but compare. When comparing I once again find the shame. Shame that we picked the wrong loan officer. Shame that we lost the first house we were in contract with. Shame that we went through a foreclosure. Shame our credit score isn’t high enough that buying a house would be easier.Shame I have put off essential medical appointments. Shame I am not exercising (double edge sword there, unable to but feel I should). Shame I don’t have the money to try all the options available to me. Shame I don’t fight for answers like I used to. Shame there is more that I could be doing for my health but I am not.

Although the depression has led me to despise myself the way that I do, I am afraid that the shame is here to stay. Intellectually I know that only so much is in my control, nevertheless my vault of shame is crammed with all of it. I just hope I have the energy and desire to rid myself of the shame I can control.

 

*Ashley- I love you and I hope you will forgive me for writing about you. Oh and being such a jerk and not hanging out.*

 

 

 

 

Ticket to Fail

Tags

Chiari, depression, Disability, Failure, Social Security, Ticket to work, Working

I would like to take this opportunity to thank all of you tax paying citizens. Your hard work is my gain. Because of you going out there everyday, working a job you quite possibly hate, I am able to be as lazy as I want. I can lay around all day watching TV, play video games and sleep as much as I want and still collect my Social Security Disability check each month. It is quite the easy life.

Obviously this is not how I think, nor act. However, during this past tax season it was evident that this is how society  views me. Every day for the past 4 months my social media feed was filled with memes & posts telling me how lazy and despicable I am for accepting government assistance. At first it made me angry, of course anger is usually my initial response anyway.  Though my anger quickly dissolved into embarrassment, depression and my always favorite; worthlessness. Intellectually I understand that these memes and the like were not created with me specifically in mind. However, I am a benefactor of the programs being criticized so I do take it personally. Although there is no question that I am disabled, and one of the genuinely eligible recipients of Social Security Disability, it isn’t easy to receive it and at times I am filled with guilt. I would trade my disabled body in for one that could work the crappiest, low paying job in a heartbeat. I want to work and although my body does everything it can to stop me, I still try.

According to Utah Disability law, I can work up to 20 hours a week without risking my benefits. (There is also a maximum amount you can make as well) For the past few years I have used this opportunity to substitute teach. This has been an ideal position for me because of my love for children and education. Typically I will sub once to twice a week equating to 12 hours tops. At the end of school last year I got this crazy idea that I could do more and went to find out more about Ticket to Work. Ticket to Work is a program that assists disabled people get back into the workforce. It is a really amazing program. They help you with everything from writing resumes to advocating for you to your employer about any accommodations you may need. In order to get into this program I went to a place called Ability 1st that offers not only support with Ticket to Work but so much more. They made it easy for me to get started. I was able to get signed up and on my way in no time. I was so excited and looking forward to working again. I felt like a real person again. The goal is to help you become more and more self reliant and in the best cases get off Social Security Disability altogether. That was exactly what I wanted, to make my own money. But like everything else in my life, I failed. I was not able to work the required amount and I was dropped from the program.

No matter how many times reality hits me about my disability I never get used to it. In my mind I am an able bodied woman, that can do anything for herself. While last school year I felt good enough to sub a little, volunteer and live my limited life, this year has been different. This year I struggle subbing more than once a week.  I hurt too much. I have no energy. My health is declining with each day. I have had to choose if I want to see my family or work for a couple hours. I go entire weekends without getting out of bed, sleeping the majority of that time. Is working and making the meager earnings I do worth it? I am not sure if my family thinks it is but it is something I have to do. With the school almost over for the year I have thought about finding a job that is easier on my body. I would love to be able to do something like Data Entry or anything really I can sit, and not have to use my body too much. I know the chances of me getting a job like that are slim but I am used to setting myself up to fail. I am really good at it. Maybe I could get a job doing that?

 

 

Solitary Confinement

Tags

anxiety, Chiari, depression, Family, Friends, Phone

 

You called me again today. I didn’t answer, but I thought about it. You have sent me text messages to “just check in” everyday for weeks straight, only to get a reply once or twice. You invite me to come to dinner, hang out….anything, only to be ignored or turned down. When others have long ago given up on me, you haven’t. I don’t know what makes you continue to try, but it means so much to me. 

This past year has not been my greatest health wise. Although my physical health continues to be the forefront of my problems, this year my mental health has been at an all time low. I have been diagnosed with depression and anxiety. Neither of these are new to me as I have suffered from both to some degree for the majority of my life.  In this post from almost 2 years ago, I had mentioned that my depression was bad enough that I was seeking help. I assure you I am getting the help I need, however circumstances recently have had the opposite effect. Living where we live, having things not go right and as always my limited abilities have all piled up on me causing me to not be the friend or family member I used to be. 

A lot of days, the best I can do is just survive. Get through the day any way I can. My biggest accomplishment being, staying awake for longer than an hour straight or changing clothes. On those better days I might actually shower and spend time with my family. Every day is a new battle and I am fighting more than one army. When my phone rings I could be suffering from a migraine or other headache. I could be asleep from exhaustion. I might see your number and immediately freeze, a barrage of ‘what if’s’ hitting me all at once. “Is this going to be bad news? Are they mad at me? What do they need?”  There is also the chance the depression has it’s hold on me and I just can’t. I might want to but I can not convince myself to do it. These are not excuses, they are my explanations.

Aside from the things that are causing me to be unavailable to you, you should know that sometimes I am in fact straight up ignoring you. I am not doing it to be rude, I am protecting myself. I am simply not strong enough to deal with certain things. I have so much on my plate that I can not always handle someone else’s problems. There are people whom I used to be there for unconditionally. I would drop what I was doing to listen, assist or rescue them. Now I don’t talk to them. It isn’t because I don’t care about them anymore, or that I don’t want to be there for them. It is the opposite, I love these people so much, and would do anything I could for them. However I would crumble from the weight of their needs after one conversation. I have withdrawn from relationships that have any negative effect on me whatsoever. It might be selfish, but it is the only way I know. 

Depression has robbed my life from family and friends. I have missed out on special occasions, important moments and opportunities. Every day I am trying to claw my way back to who I used to be, praying that by the time I get there I haven’t lost everything. I miss so many of you and I wish it was a simple as answering the phone. For those of you that are constantly reminding me of your love for me, that have been understanding and refuse to give up; Thank You, you are the cat’s pajamas.

 

 

House-less

Tags

depression, Family, Foreclosure, homeowner, Hope, House, HUD, Kids, renting

 

My current bed consists of a 13+ year old mattress laying on a floor of carpet covered concrete. There is no bed frame or box spring, those are in storage. Storage, it is where our couches, other furniture, dishes and even our clothes are.There is no yard to play in. Our friends and school are a 10 minute drive. We are either freezing or sweating while inside. Cooking has become a chore that is avoided as much as possible. Holidays are depressing and dreaded. We had to say goodbye to our dog, who has been a member of our family for 8 years, and give him a better home than we can give him. This is just a glimpse into our lives living in a tiny basement apartment and how we got here.

This Lifetime movie worthy saga starts approximately 4 years ago. As you might remember from Through Hell and Back we were involved in an illegal foreclosure and lost our home. At the time I did not go much into the details besides that we had a lawyer and the bank was Wells Fargo. Here is what happened: We were a couple weeks late on our mortgage payment one month. Upon getting the current bill with 2 payments due I sent a check for that full amount. A few weeks later we got a letter saying we were in foreclosure. This made no sense to us as Wells Fargo had cashed the check that would bring us current and again we weren’t even 30 days late on the payment. When we finally got in touch with a representative we were assured it was a mistake and that they would fix it. This went on for months. All the things you hear about having to submit paper work over and over because it was lost in the mail, or the bank never got it is a real tactic they use to ensure you stay in foreclosure. Not getting any results on our own we hired a lawyer. Instantly he was able to spot how illegal what they were doing was. Not only did Wells Fargo ignore his firm’s letters explaining in detail all the areas they were breaking the law but they played the lost documents game with them as well. At one point our lawyer mailed, faxed, emailed and couriered over the same set of documents to Wells Fargo and they still tried to claim they didn’t receive them. Doing everything our lawyer advised and having the law on our side didn’t help we still lost our home. Our lawyer was still hard at work for us, in contact with Wells Fargo every day when we got certified letter stating that our house had been sold. We were not given a sale date or anything. Telling our children that we had to leave the only home they knew was heartbreaking.

Somehow we got lucky and found a house to rent that was literally a block away. We were so fortunate to be able to rent that place and I am so grateful to the owners for taking a chance on us. We lived in that house for 3 years. It was a great place. We were close to our friends, we had room, we were happy. The goal was always to buy as soon as we could and we worked hard to get there. After a foreclosure in Utah, you are not able to purchase a home until 3 years from that date has passed. As soon as we reached that date we started the pre-approval process to see where we were at. Mark and I’s credit both took a huge hit from what happened and only his was even close to where it needed to be, but we got the okay to start looking. Unfortunately our lease was up. We were still a few months out from buying yet we had to move anyway.

Finding a rental for short term was difficult. Finding a rental short term that allowed pets was near impossible. We had not found anywhere to live by the time we were due to be out of our rental and ended up at Mark’s mom’s. We could not bring our pets with us to the in laws and were forced to either get rid of them or find a sitter. Again we got lucky and the sweetest family watched our fur babies for 3 weeks. It wasn’t easy on anyone but we survived those 3 weeks. Finally the week the boys started school we found a basement apartment that gave us lease terms that worked perfectly for us and we moved in.

We found the house for us quickly. It was a great price, perfect size and just across the street from the school! It was a HUD owned home and although we were warned that HUD homes take longer and often more work, we still wanted it. After they accepted our offer we were given December 17th as our closing date. We were stoked. We could very well be in our new home before Christmas! I quickly learned how dangerous hope is. Right from the start we should have known the nightmare we were in store for. HUD took forever doing anything and there were hold ups around every corner. December came and went and we were no closer to moving in. Our inspection was delayed, the appraisal came in too low, there was a leak we had to fix. Problem after problem resulted in needing closing extensions. These extensions, whether requested by us or HUD came out of our pocket at $375 a pop. An extension was needed about every 14 days. After paying for more than a couple of these we finally thought we were about ready. Not a chance. Out of nowhere, a bill 3 years old was posted to Mark’s credit as a collections debt. Not only did we not know this bill existed until it was too late but this was a bill that was supposed to be taken care of by Brick Oven Pizza. Peyton was accidentally served gluten pizza and ended up in the hospital for a weekend. The manager at Brick Oven insisted they pay for everything with out hesitation, which they did. However this one must have slipped through the cracks and now Mark’s credit had taken a huge hit.We needed another extension while we got this taken care of. After months of delays on their part, HUD refused to wait for us and cancelled our contract. We lost the house. I can not put in words how discouraging this process has been.

The bill was paid in full and we have been ready to get back out there, find a new perfect house yet here we are stopped at yet another road block. Our loan officer, has not pulled our credit, started the pre-approval process or anything. We were told after we paid the bill off that he was ordering us a rapid rescore to get this going. Didn’t happen. We were told he was going to pull our credit on Tuesday. Didn’t happen.

Mark and I are at a loss of what to do at this point.We have been living in this place for over 6 months and counting. It is taking a toll on all of us. We know we are fortunate to have a roof over our heads, and to have all the things we do have. We really are grateful for our many blessings but that doesn’t mean we are happy. It sounds silly, some of the things I complain about but until you live them you don’t understand. Not having a Christmas tree isn’t the end of the world but the sadness in your children’s eyes makes it feel like it is. I have no choice but to keep trying but I have lost hope that something, anything will go right for my family.

 

 

 

 

 

 

 

 

 

 

Not Morbid, Practical

Tags

Chiari, Death

 

 

February 26th of this year will be the day I die.

No this is not a suicide post, it is a for your information, so be ready post.

Okay so it isn’t set in stone. But as far as I am concerned, it is. Actually the 26th may be off just a bit but definitely before I reach the age of 32 which is on March 23rd. So there is a like a 24 day window.

I have a friend that does a very good job keeping track of any Chiarians that pass away. I touched on this a bit in my last post but just for an update here are some numbers. In 2014 my friend was made aware of 31 deaths (this number is much higher but these are the only whom were confirm-able and that were known). That is 31 Mothers, Fathers, Sons, Daughters….a loved one that because of Chiari their life was cut way too short. I talked about those that committed suicide but a great deal of them don’t. Some of them have complications during surgery or the Chiari is found too late.  Then there are those deaths that are due to a secondary cause such as Sleep Apnea but if not for the Chiari they would never have. Those are the scary ones. There are always risks in surgery but those secondary conditions are hard to diagnose and treat. As the Chiari can cause a enormous range of symptoms it is difficult to know when it is Chiari, when it is a secondary condition related to the Chiari, and when there is something totally unrelated going on. So if you have Chiari, how do you know you aren’t also suffering from a secondary condition just waiting, lurking in the shadows like Death himself.

 

As most of you know my Mom died when I was 12. It was completely unexpected. She had talked to me the day before, went to bed and never woke up. At the time the only thing we had to go on was the fact that she had had a cold that week. The medical examiner took his sweet time releasing the death certificate, around 3 months in fact. There was a reference to Viral Pneumonia but officially the cause of death was inconclusive. None of this meant much to me at age 12. My mom was dead, it was from some type of natural cause, it didn’t matter what it was.

Now however it means quite a bit. My Dad and I are convinced that my mother had Chiari. Obviously as unknown as it is now, it was basically unheard of back then. Looking back I am certain she suffered from Chiari and died from Central Sleep Apnea or similar. I hear myself telling my boys things she said to me all the time. “Give Mommy 20 minutes to take a nap” “I’ve got a headache, please keep it down” I can not tell you how much this new found epiphany has explained. My dad, I think, has found some comfort in knowing she had Chiari as well. I know he had watched her be in pain a lot, not knowing how to help, watching as she self medicated with alcohol and recreational drugs. I don’t know how hard it is to be the spouse but I know it has got to be heartbreaking. As much of a comfort it is to me to finally know, and understand what she was going through it scares the hell out of me because I now know how I will die. Which actually brings us to the date of February 26th

When my Mom died she was just 31. She was to turn 32 the next month. I am 31. My 32nd birthday in March. I’m convinced I will die exactly the way she did. Mark, humoring me helped me do the math. My Mom died January 26th and her birthday being February 20th. That gives us the February 26th, but more importantly before I turn 32.

Yes I know that chances are I will be just fine and live well over age 32. We know I have Chiari, I’ve had the decompression surgery, medicine has improved in the past 20 years. Yet there is that part of me that can not shake the feeling that this is it for me. So I have spent time talking about it, planning it, and preparing for it. I know some of my family can not stand it, my dad especially. Lets face it though, how many people do you know died and it wasn’t a surprise? No one is ever really ready for a loved one to go, and a lot of the time there were no preparations made ahead of time. So for that just in case here are some of mine:

I know this is probably not like a legal document or anything but nothing in here is anything that would need for it to be legal. Also I currently do not have life insurance so you may all have to pitch in. 

• In the event of my death I need the boys with Mark and only Mark for the first few months.  A lot of you may want to help him out by taking the boys to give him a break as he deals with this difficult task, but please don’t. I understand there may be times he can not do something with the boys and so they can be watched by only a grandparent for up to 2 hours tops.  I have a lot of reasoning behind this but I wont go into all of it here, Mark knows all my reasons.
• Anyone is welcome to speak at my funeral but I want a separate person for each of my passions that knows me well enough to talk on them. One for the University of Utah, one for School, my work in kindergarten &  the PTA, and one for Chiari.
• I want to be buried wearing red and my Chiari bracelet.
• Please give enough time before my funeral for my out of state family and friends to make arrangements
• Amazing Grace is a must
• My choice for Pallbearers are: Charles Vincent, Dillon Vincent, Kyle Jackson, Mike Bard, 2 Undisclosed names but Mark knows and so do they, Strider Vincent & Chuck Vincent. Honorary ones: Scott Bard, Peyton Bard, Floyd Jones, Jonathan Jackson and whomever wants to and Mark is okay with. On leaving Mark out of the Pallbearers; He is more than welcome to be one, but he has carried me so much in life I don’t think it is fair he should have to carry me in death as well.
• The football will go to Dillon as it is both of ours ( he knows the one) The rest of the Utah stuff will be saved for Peyton. Scott will be the beneficiary of the rest of my meager assets with Mark deciding what will go to him.
• My season tickets will automatically go to Mark as per the ticket office policy. He and my dad can figure that one out as they are as much as my dads as they are mine.

That really is all I have. However I will be keeping a record of these wishes on paper as well as updating them if necessary. 

I apologize for all the gloom and doom of this post but I had to put it out there. As the days and hours get closer to my birthday I worry more and more. I’ve been told its natural to feel apprehensive about this sorta thing, but it is more than that. I’m more than apprehensive about my upcoming birthday…. I’m downright freaked out. My biggest fear is leaving my boys. I grew up without my Mom, I don’t want them to have to. I think about all the things my mom missed out on, and of course I would miss out on that and more with my boys. I pray that if I do end up leaving them, that they will know how much I love them and that someone will be able to be there for them when they need ‘a mom’.

Any one of us can die at anytime. It happens everyday. So if I do somehow end up making it to 32 unscathed, I’m celebrating. I’m celebrating like crazy. I know that it doesn’t change my health and the fact that I will die, most likely before anyone is ready, but the monkey will be off my back for at least awhile. Until March 23rd I will be living life til its fullest and continuing to do all the things I love. Carpe Diem, YOLO and all that.

 

 

School, The North and the PTA

 

 

I have reached that point in my Chiari life where I keep wondering why the hell am I still alive. Furthermore, is my life even worth living? Its a hard thing to admit but this summer while I was super sick with bacteria after bacteria infections, and having to take 8 rounds of different antibiotics, is when I realized how depressed I was and I guess am. So many of our fellow Chiarians end their life themselves. Even when my Mom died and I so badly wanted to be in heaven with her, I could never imagine taking my own life. I have known people whom have committed suicide, or attempted. All of them were in their teens at the time. I could not fathom, how anyone could do that. Really leaving all their loved ones behind, taking the easy way out….whatever. Even as I reached adulthood, and I understood more about how someone can be hurting so bad inside. Emotionally destroyed that they see no other way, I still couldn’t ever imagine anything that would push me that far. Now I know. And if not for my boys I wouldn’t be alive right now to write this.

It is hard to explain to someone how much physical pain someone with Chiari has, let alone how hard it is on us emotionally. The pain never stops. Ever. Every second of my life I am in pain. Yes I have medications for that, and my family Doctor has been really good at helping me figure out how to control my pain, but not have to take more narcotics than I want to.  Like I have explained before, the pain varies on intensity from day to day and even hour to hour. Also there are triggers that cause more pain… Walking, Stress, Lifting More than I should (10lbs), and basically anything physical. I have always had the philosophy that some things are just worth the extra pain. We have been through all this before, but what happens when your physical pain is matched by your emotional pain? I found out this summer.

We had 2 deaths in the family that would make anyone have the blues for awhile. One of these deaths was a complete surprise and hit our family hard. The other one, just as sad, was more of an expected one (she had been sick for years and years with multiple serious conditions.) So yes sure these deaths did contribute to my severe depression I had this summer, but they were just a blip on the ‘why cant I die’ screen.

Summer is hard for me in the first place. Kids non stop, no sports, the sun makes me sick…It is not my favorite time of year. Yes I did enjoy the sleeping in but that’s it. Other than the infections I had, I’ve noticed where my Chiari is just making me regress further and further. I have been forgetful before (remember when I forgot I bought a certain pair of panties?) , I had days where I had to ask multiple times what day it was. I didn’t even remember asking the first time. I am starting to feel like I am getting Alzheimer’s. Also my fine motor skills are in a steady decline. I can be writing with pen and paper and my hands start shaking so bad I cant even write. I have a hard time holding a glass sometimes. I shake a lot, nothing new but just the decline. And the worst thing I started noticing is I will lose words. This isn’t exactly new, but it has never been like this before. I can be talking and mid sentence I lose a word. Have no idea what it is. I can describe it but something as simple as scissors I forget what they are called. This actually happened this past Saturday, I needed some but could not figure the word out so I sent a text to Mark to bring me a cutting thing. Also the pain is worse these days than I have ever felt.

So we have my decline in health which I have always had a problem with and have been on antidepressants for near a year now. They did help til this summer. Everyday I would try to get out of bed, despite the pain, despite that my infection has me so tired I cant wake up. Taking care of two boys, absolutely doing nothing with them cause I cant. I hurt too much. Antibiotics have me so sick to my stomach I don’t even want to move. Lets add now to the fact that the house is always a mess. At times downright filthy. Oh and I cant clean. Technically I could, but bending down to pick things up makes me feel like I am going to vomit, and sometimes does. I have tried. I have tried and tried to just do little bits, or do it on a good day. Nope. I get as sick as if I went for a two block walk. There are things I can do, anything that is at my level, such as a counter, I can clean off the clutter. I can fold laundry. However, the majority of the housework I can not do. Scott and Peyton have chores of course and during the summer most weeks they were really good at them. So if you will imagine yourself, in horrible pain, things are getting worse. You are all alone all day with these rowdy boys, sometimes more than just my two. Not able to do a single thing with the disgusting house that I had to look at every day. I don’t ever leave the house. Ever. As soon as Mark gets home I fall asleep. Sometimes for an hour, other days until morning.

This is where I started wondering what the hell is the point. I’m not being a good mother, I swear my husband hates me and I’m not even contributing at all. To anything, to my family or to society. Sure you all saw me on social networks and stuff but who cares? Internet friends aren’t real. I cried for over a month straight every night. Asking Mark if I can just be done. I didn’t want to live at all anymore. I wasn’t contemplating suicide, but only because I couldn’t leave my boys. But I was at that point. Obviously I knew I had to do something. I reached out. To someone outside the house. A very good friend I call Taylor (not his real name) He kept me going most days. If I even mentioned not wanting to live he chewed me out so bad.

You may be wondering….Um Misty what are you even getting at here? The title has nothing to do with depression or suicide.

Ahh but it does. Those three words are what have helped me slowly come back out of my depression. Still depressed and probably will never get away from the clutches it has on me, but I figure it is pretty damn normal for someone in my situation to be depressed.

Lets start with School. I’m going on my 3rd year helping out in Kindergarten. I don’t get paid. No matter, I show up nearly every day and help teach. Sometimes I do actually sub and I do get paid for that, but 90% of the time I am in Spanish Oaks Elementary is on a voluntary basis. I found that I am great with children. Love them. Love helping a kid learn. Also not one thing I have ever been asked to do has made me trigger a bad day. I do have to say if there is a day I have to Sub a full day and maybe an upper grade, the stress does get to me. My boys love me at the school and they always want me to Sub in their classes. Also I have found I very much enjoy being in the PTA. In fact, this year I am President. It is a lot of work, and yes the stress has a few times made me feel like crap, but the feeling I get while I am doing it is more than worth it. I am always joking to the staff about how I’m addicted to being at the school. Cause even on days, I’m not needed or there is no kindergarten, I find myself somewhere helping out in the school. I step in those doors and stress just melts away. I feel like I’m giving back! So many times have people helped me. I even get paid because I’m disabled so, this makes me feel like I’m giving back to society and paying it forward somehow. Which sorta brings me to that middle word.

The North. I am not going to get into all the specifics about what this is, but I was asked to be on a board made up of 6 very passionate University of Utah fans in the north end zone. It is a two part group sorta. The most important part of the whole thing, is we are trying (and succeeding) to provide scholarships for our Football Student-Athletes. The other part is really just having a great time. Showing the world how amazing our section of the stadium is, in fact the best section in the entire stadium. I think after this gets going a little it may be the best section in the Nation! So wait is this one of those giving back things too? Yes and No.

There is not a single thing that I wouldn’t do, if asked, for the University of Utah. It is an amazing school, not only in athletics but in every aspect. I have not been fortunate enough to attend this University, but I am a Ute no matter. How could I not love the U of U? They have one of the best medical programs in the world. Even though they currently do not study Chiari, they do have a very impressive neurological team. So yes being a part of The North is kinda giving back with the scholarships and all. But I think its more about being able to be at my absolute favorite place, since I was a tiny girl, and working with the best group of people I’ve ever worked with. This project has not been quite as smooth as one would wish. I’m very, very opinionated. I have a hard time not saying exactly what I think and the poor board has had to deal with my shit, and its hard for all of us. We all have different ideas of how we want things and not everyone is going to be happy. I’m working on trying to express myself in a more tactful way, but really I’ve never had a filter. Has nothing to do with not respecting anyone or anything, I just will make sure my voice is heard. Also because I hide my pain so much, sometimes when an email comes through or a meeting, I could just be in horrible pain. It is hard to always smile in pain. (more on that on another day)

Bottom line though with The North, it gives me something that I can do. I am part of. I’m helping make something special. So many reasons I love being a part of the board, but It gives me just one more thing to live for.

Depression is a very serious condition and not one that should ever be taken lightly. And now that I have been through that deep dark  I don’t want to live anymore depression, I now get it. I can understand how someone just cant take it anymore. Hell the physical pain I go through is enough to send some over the edge.

I do not want to downplay, the importance of my family and close friends that have helped me the past few months. They have been a huge, huge help. It is nice to know you have someone you can lean on at anytime. It is even more amazing to have someone you can lean on outside your family, that you know no matter what is going on, they always have your back. Thank you Taylor…..so so much. Also Mother Batman. You with your inspirational posts, and willingness to talk to me about how hard it is to deal with a debilitating disease, while trying to raise a family.

But the point of this entry is to let everyone know why I’m so insistent on volunteering my time. Why I have no problem driving to Salt Lake for a 15 min meeting. It is keeping me not only alive, but happy.

Will start writing again shortly

I know I always say this but its true this time. Mark (the Husband) is always getting mad at me for not writing more. Im going to start making it a priority so look for a post this WEEK!

Through Hell and Back

Tags

Chiari, hardship, Open heart surgery, Utes

 

Yes friends I am still alive. I know you were all probably wondering. I sincerely apologize for leaving all my loyal readers, without so much of a hint of what was going on. Although I have been ready and wanting to come back for a month or so, it took an email from a reader to get me off my butt and do it already. Still waiting to hear where I have been for the past year? I was in Hell. Plain and simple. Worst year of my life. So lets get caught up shall we?

Last I left you I was having the Best Summer Vacation ever. And let me tell you, it was amazing. I promise (for real) I will post about all of our adventures really soon…. before we start the sequel. The world crashed in about mid summer.

First we found out our baby boy, okay so he was 5 at the time, had to have open heart surgery. This did not come as any surprise, he has needed it for a couple years but, it was actually happening this time. Peyton has what is called a Sub-Aortic Membrane. It isn’t rare or anything. Basically it is an extra membrane that hangs out right under the aorta valve. He has had it since he was an infant. It was never really a problem, just caused a loud murmur  When they first found it, the doctors told us that chances are they will never have to do anything. 1/3 of patients it stays the same size their whole lives (you could be walking around with one), it doesn’t affect the heart what-so ever. 1/3 of patients the membrane shrinks or gets absorbed. The last 1/3 of patients it grows so big it starts blocking blood flow.  It was our luck I guess that Peyton would be the latter. He had been monitored every year with Echos and EKGs, then it got to where it was getting bigger and was monitored every 6 months. By May, we could tell it was getting worse. He was slowing down, the murmur was super loud, and you could even feel it when he would cuddle.The entire summer, anytime he got a cold, anything, we had to rush him to his doctors office so they could check for heart failure. So they finally scheduled the surgery. It was the worst thing I have ever been through. Here my tiny little guy is getting OPEN HEART surgery, he had to go on a by pass machine, his heart stopped! I’m telling you right now, you never know how strong you are until you have to be. His surgery was on Sept. 6th, and believe it or not we had even been living in purgatory before that.

Peyton right after getting out of surgery.

I wont get into all the specifics, because it is a very long story, and all the details don’t change a thing, but we lost our house to an illegal foreclosure. We were never late on a payment, we did nothing wrong, even got a lawyer involved but we couldn’t stop Wells Fargo from taking the house we have lived in for over 8 years. Yes our lawyer is helping us sue, yes we were able to find a wonderful house to rent just a block away, yes we will own again but we cant help but be a little pissed about the whole thing. So on top of planning our son’s open heart surgery, we were dealing with leaving the only home my boys had ever known, finding a place to live and moving. But wait there is more…..

Just when we were getting our bearings, just before Christmas, my husband was told he was getting laid off.  After 10 years working his ass off for this place they were pretty much shutting down. His entire department would be gone. Fortunately  since it was a mass lay off they were required to give the employees 90 days before the actual last day of work. We were so blessed my husband found a job so quick, he was not out of work for even a day. Yup, I’m not done yet.

Since last March, I have been dealing with a bad ankle. Took awhile to figure out what exactly was going on, and a few conservative treatments, but I ended up having to have surgery. Yes another surgery, I’m sure our insurance just loves us. I am now 5 weeks post op, of a cyst scope/graft and a lateral ligament repair.  It hasn’t been fun. Hurts way more than I expected and if any of you Chiarians have had to use crutches before….. wow, it is hard on my already screwed up body. I have a long recovery ahead of me, but things are looking good, so says my Physical Therapist.

Oh and my parents got a divorce. Well my Dad and step mom.

That is pretty much it. There have been little things here and there but, can’t really ‘sweat the small stuff’ with all that going on. It has been quite the year. All those hardships, but with them came some amazing moments. For example, Peyton was able to get a very special visit while in the hospital that will forever be in our hearts.  My two young sons learned a very valuable lesson about adversity. We got paid a full 10 weeks in severance, that we didn’t even need to use. I do really try to see the positive in things, at times it is easier than others.

Now we are caught up. Again, I am sorry I was gone so long, and I am sorry this post was so full of negative junk. Let’s meet here again soon.

I Know What We’re Going To Do Today!

Tags

Chiari, Summer

Uinta Mountians Did not take this picture, just an example

Here it is 5 days later, and I am just now recovering from an overnight camping trip my family and I took. It had been 2 years since the last time we went camping, and even though I knew it would be hard on my body, I was very eager to go.  We went up to the Uintas here in northern Utah. Along the Mirror Lake Scenic Byway, there is campground after campground that puts you smack dab in the Ashley National Forest. It is so beautiful up there. The air is clean and crisp, there is hardly any cell service, and it is by far my family’s favorite place to go. So it was the 4 of us + our dog, and my little brother, Dillon and his girlfriend, Ashley. We got up there mid afternoon and ended up with a great campsite. There was plenty of shade and a river just a walk away. The only real problem was there was all this loose dirt that my boys covered themselves in. We had a great night and even went for a mini hike to that river the next morning.  We were supposed to stay 2 nights but everyone but me insisted on coming home that afternoon. I was so grateful they all wanted to come home because I was dying. Even so, I wasn’t going to be the one to make us leave…again. I am always the reason we have to cut trips short, or even avoid doing something fun altogether. Not this summer though, not a chance.

I am determined to have a Phineas & Ferb summer. Most of you will know what I am talking about, but for those of you that don’t, might I suggest watching the Disney channel’s most awesome show. The basis of the show is to have fun, make the most of each day, and make the 104 days of summer vacation the best ever. So that is exactly what we are doing. With the inspiration of Phineas & Ferb, we have resolved to do 104 things this summer. It is a lofty goal considering my condition but, I really think we can reach it. True we are only at #11 but each day is an opportunity to add to our “104 Things of Summer Vacation”

Besides #10 our Camping trip, we have things like #2 Graduation ceremony for Dillon and #5 Learn how to ride a bike without training wheels. There is no real requirement other than the memory it creates. I will not be adding ‘Doing Chores’ or ‘Sitting Around’. Some events will be small and easy, others will be trips that have taken planning and money. We already have 34 more things that we have decided to do. For instance we are taking a trip to Denver in July, that will add at least 5 more. We have silly things you wouldn’t even associate with summer like, Learn Mario Bro’s Song on Guitar. Or super simple things like Getting Squishies at 7Eleven. The possibilities are really endless.

My Chiari has limited me so much, each year getting worse, but that does not mean my family can’t have fun. I have been getting a lot better at accepting (to a point) that I can not do things. Instead of thinking about all the activities that I can no longer take part in, I have been focusing on what I can. For example, I haven’t been able to go on my dad’s boat for years, however that doesn’t mean I have to cut myself off completely from going out on a body of water. So I thought about it, broke it down and figured out what exactly it is about boating I couldn’t do. It is the bumps, the ones that you feel going over the wake, and taking a boat up to cruising speeds. They are scary for someone who has no skull, and a screwed up neck. Even going on a dirt road jars my head and neck so bad it hurts for days. But what if I could eliminate that? Is there anything else about being on a boat I shouldn’t do? Not a thing. I can swim, and as long as I don’t stay in the sun too long I would feel perfectly fine. After I figured this out, the answer to boating seemed so simple. How ’bout I wear my neck brace? How ’bout I ask my dad to cruise at a slower speed, just when I am riding? And just like that, by changing my thinking process just a little, I have been able to open up and safely participate in an activity that has been closed off to me for the past 4 years. Boating is just one example, there are so many others.

Obviously there are some things that I will never be able to take part in, no matter how clever my thinking is. I can’t go on roller coasters, I would never be able to water ski or otherwise, somethings are just, and never will, be safe for me to do. That doesn’t mean I have to hold my boys and husband back. I can’t limit anyone else to just things that I can do. I am not gonna lie, it takes some work not getting jealous of what others can do, and it takes even more work being okay with being left out of some activities. I don’t want to be a Mom or Wife that is selfish and is a damper on everyone else’s fun.

With that being said, I move forward with my 104 Things, and look forward to all the memories we make this summer. After all “Today could possibly be the best day ever”

*If any of you have any suggestions on things to add to our list, please email me at  lifeasabard@yahoo.com or simply comment here*