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[kristiabbeyjamesannafaith]

September 11th. A day we promised to never forget. While I will never forget that time of my life, I am sometimes guilty of forgetting my promise to hold on tightly to the lessons of that tragedy. It goes beyond simply recalling what occurred on that particular day. Truly remembering something that has happened means that you can close your eyes and see images of those planes hitting the WTC. You can remember the despair and physical devastation. When recalling days that change your life forerver, you know where you were, how you were dressed, who called to tell you the news, what you did in the subsequent hours as the attack on our nation unfolded. And then you can remember going home that day to be safely with family. There was silence on the streets. The TV’s were turned to the news with the world watching in a trance-like state of mind, certain this is not really happening on American soil. Remembering each and every moment from that day is important and equally soul crushing.

Then the sun rose again on September 12th. Was it a dream? Just opening my eyes that morning, I knew it wasn’t a dream and now I was living in a new world. An America that would never be the same. What I did not realize was how incredible this beautiful country is. We held hands with our brothers and sisters all across the vast land to show solidarity. First responders of all genders, race, sexual orientation etc. lent a hand and did the work. The massive destruction needed to be searched and nobody cared if the person next to them in the fight to find survivors was a republican or democrat. They were just patriots stepping in to help ease the pain of the mothers, fathers, husbands, wives, brothers, sisters, aunts, uncles, friends..... I could go on.

September 11th was both an extraordinary sad time and also a day that showed me what it meant to be an American. I was in my early 20’s and this was the first time I recall being scared to exist in this mad world. But in the days to come I saw the most amazing acts of human kindness and selflessness in the rubble of despair. I saw strangers lifting one another up. I saw people reconnect with long lost family members or friends as we all realized how fragile life is. I saw true leaders standing atop the shattered buildings with a megaphone telling the people in NYC and around the world that there is no better place than the United States and that we would overcome this emotional and physical devastation. I listened to that leader even though I did not vote for him and I answered his call for unity. I watched the country light candles and stand shoulder to shoulder ready to protect our great land as one, unified regardless of our differences. I can’t remember how long it lasted, but the pride and resolve that was planted deep into our souls on September 11th did not discriminate. The seeds of unity were planted in all of us no matter where we came from, who we voted for, what we believed in or who we loved. None of that mattered. We were one nation.

I think that could be the only time in my life that I felt true unfiltered patriotism.

Fast forward to September 11th, 2020. Look as us. Take a good hard look at what we have become and decide what America you want to live in. The Pandemic has killed far more of our people than the attacks of 9/11. Back then, we were determined to never forget and to never let anyone or anything shatter our resolve to protect and defend this beautiful land. LOOK AT US. We have lost almost 200,000 of our own people and we are pointing fingers like my kids do when someone doesn’t get the dishes done. We are arguing about everything that isn’t important and losing sight of what is. We knew exactly what to do after the attacks. We cried, we fell to our knees in despair and then WE.STOOD.UP. We rose to the challenge without involving politics or party. We met the moment with a determination that we desperately need to find.

The seeds of unity were planted in all of us back in 2001. They are still in us. We are the same people that stood together to be stronger. Better. More patriotic. And we need to be those people again.

On this 9/11/2020, people have been dying at a rate of 1,000 per day on average. We lost a total of approximately 3,000 Americans as a result of the attacks of 9/11/2001.

That leaves me with one question for all of you and I really want you to think about it long and with 9/11/2001 on your mind.

Why are we failing to meet this moment?

God Speed and God Bless all of you.

[kristiabbeyjamesannafaith]

January 2020. I was asleep when the ball dropped, but as always I woke the next day to see another 24 hours given to me and now the calendar says 2020. When Abs was born in 2003, I thought about things like “well, I have all the time in the world because she isn’t going to drive until 2019” or “I have yeeeaarrrsssss to save for Abbey’s college. It is 2004 and she does not go to college unti 2021!!!!”. Then Anna came along and I stopped paying attention to the years because they were clicking by too quickly. If I thought about “time” in any real way, I would break down and realize “OMG, I had Anna 5 years ago and I am not on track to pay for her college”. And now? Now if I think about the year we are in I have one thought. “Boy did I mess that up”.

Speaking of time, I have spent the last four months being sick. September 4th we expected a recovery time of three months tops. I had a solid recovery plan and really was going to follow directions, rest proper and allow my body to heal. So shit didn’t go as planned again. Infection, hospital stays, central line... the whole damn package all over again. But now, I think I am out of the woods. That means it is “time” to get to it. Time to start the routine of getting out of bed and staying out all day. It is time to spend the morning at my desk writing my novel and working on the middle school talent show until I need a nap on the recliner like I am 82 instead of 42. I need to start walking my dogs for my own health as well as theirs. They get the back yard, but there is nothing like their walks and it is up to me to do it. After a nap, I should be capable of 20-30 mins before bed. I need to do things to feel inspired, simple things. Like listening to music. I must take time to listen to music and feel alive again. I have to set goals and meet them. Little goals like “write 2000 words a day somewhere”. This might help my brain to start firing again. I must make the time to go to church and church choir practice no matter what because I know it makes me feel complete. These are the things that I must do without delay. Time tells me so.

The thing is, I have a problem. Recovery from surgery is hard. Recovery from the sepsis and the endless flow of medications directly to my heart is hard. I know because I have a lot of experience with this. But something is harder about this time. Probably age. A weary body tired of the assault. When I am thinking logically, I know my slow recovery is to be expected. However, logic isn’t really a player at this point because I want to be doing the list of things I previously mentioned. There is one thing new here. Before my surgery, I drove Abs to school every day because she was not yet licensed. She now is and has her own car so I do not have to take anyone to school and they now get themselves up etc. I am always awake at around 5 or 6am, but have gotten in this habit of going back to sleep once they are off. It starting during the “sick” period, but it is a hard habit to break. I am told that when my body feels tired I should sleep. Well, I think there are blurred lines now in relation to what I really need to take the next step toward wellness. I think that I have been tired every morning of my life since the day I was born. I am not a morning person. Therefore, I need to get over it and get my ass out of bed with the kids and start my morning at my desk. I know it is the only way to regain any life momentum, but it is the hardest thing I feel like I have ever had to do. The fact is I hurt more than ever. My drain sites are still angry and normal healing did not take place. I still FEEL sick.

This brings my to my next problem. I have brain fog like I have never had it before. Prior to September, I had so many little projects going on that I had to calendar my days to limit time spent at my desk. If I worked too long, I would later pay the price by spending a couple of days in bed. I look at my desk every day and think “what will I do if I sit there”. And it is like my mind turns black. There isn’t anything there. I have no creative feeling. No grit to find my way back to a productive path because I don’t even know where to start. And that isn’t because there is so much. It is because I don’t remember where I was on any of my projects. I mean I can look at all of them and know they exist, but every one of them is driven by my emotional connection to making people’s lives better and that emotion feels gone, though I pray every single day that it is just lost. Without that connection, I am a shell.

So time has me worried. Abbey is graduating NEXT YEAR. She will be verbally committing to play softball in college in due time and we will be planning senior pictures before I have time to reconnect. She is achieving all of her dreams right in front of my very eyes and it is remarkable to see. Anna will start High School THIS YEAR. I remember when Anna was born and I had a thought about time. I thought “ok, so they are three years apart which means that in 2020-2021 they will only have one year in HS together. But that is ok because they will be in primary school together for three years”.

I find myself in the bottom of the 8th inning and I am in no shape to be here. In the race of life some major mile markers are heading my way faster than I can handle. I need more time. God, I wish you could answer a prayer to turn back time. I need to be the person I mentioned in the beginning of this. The person inspired and driven to put in even two hours a day of something worth being proud of.

I have been here before and I have done it. This time, it hurts more. It scares me more. It makes me question my strength more. It makes me feel like a failure more. And it has closed me off from the world more than I have ever wanted.

Time is something we measure success by. We equally measure failure by it. Time occupies our minds in relation to so many pillars. It is a beast and a burden.

But it is also a gift. Time is a gift and that is something I tend to forget. I think I have just figured out my first task to relocating my soul. I am going to start my 2020 (a little late) by opening the gift of time. I am going to open it and use it. The first step is getting up with the girls, going to my desk and writing down all that time has given me.

Perhaps then I will find my way back

#persistinpeace

[kristiabbeyjamesannafaith]

So there is this thing.....

Notice a little facelift on this page? I have been relatively recluse for awhile, not posting much. Who really wants to read stuff about my health (or lack thereof) on a regular basis? There is this fine line between being “sick” and “disabled”. It is sort of this crossover point where things seem less relevant when the status quo means things are shitty. One lands fully in the “disabled” category when things are shitty and there is nothing left to do but cope. It is a sucky space and one that feels permanent. Once that happens, a person is no longer “sick”. And that comes with the assumption that says “I am not going to get better”. And then life enters this space that is rather unpleasant. My personal experience involves feelings such as embarrassment that I am not strong enough to overcome the complications that have taken over my physical being. I feel grief over the loss of my financial consulting practice. I see my clients faces when I watch the news about the markets and I know who needs calls during certain times and I can’t call them. I feel ashamed when I can barely pull my wagon at the ball field or when I can’t get out of the bed in the morning. I have become mostly recluse and have intentionally made my village smaller because I think “who wants to always hear about how shitty I am and that I am DISABLED”. I have felt less than, not good enough. I have tried to accept this long term diagnosis over the last year and it always comes back to me thinking one of two things, depending on my strength of that day.

1. “I was not strong enough to overcome the ‘sick’ and now I am 42 and am forced to live the rest of my life DISABLED.

OR

2. “It is impossible that I am going to live the rest of my life like this. There must be something we are missing and I must figure it out”

The days where I have spent time processing what we could be missing has led us (myself along with my docs) to discovering two problems that can be solved and will most certainly take me back through the “sick” phase. At the end of that, we pray that I reach “wellness”.

I pay very close attention to my body and noticed a pattern with my chest pain. While I am always sore and always feel the sensation of broken ribs, there are times where things feel “different”. Those times are directly related to activity. For example, I feel like I am recovering from a fresh surgery if I mop the floor. I can feel the muscle pulling away from my chest wall if I lift something that is too heavy. While RSD can cause that overreaction, I have also noticed redness and swelling associated with those times of increased pain. I also seem to have a lot of low grade fevers. All of these symptoms led to me researching my situation and increased conversations with my QB1 (internist) for him to think about what I have learned by paying close attention and logging my symptoms and activity.

As a part of this self discovery, I found a lot of information about RSD being considered an autoimmune disease, which has long been on our radar. I have severe inflammation in my legs, hands, arms..... Bascially I have global inflammation that is felt intensely and can be seen with the swelling and redness. QB1 has been asking me to try a round of steroids to see how my body would react. After the grind of softball season and with a desire to not stay DISABLED, I agreed to try them. I took 6 days of prednisone and while I was chasing fruit flies around the house with the vacuum, my body calmed. It was a beautiful feeling. The only problem was that it did not calm the pain and symptoms in my chest.

We learned a tremendous amount from my research and my doctor listening to me. We learned that while I do have RSD from all the nerve damage, I also have two separate issues going on. We decided it was time to go back to the surgeon to have my reconstruction looked at in case we were missing something.

We were missing something massive. The animation deformity that I had two years ago is now a grade IV. That means the muscle is detaching from my chest wall again, much worse than before. In addition, the space that was left when implants were removed is filled with encapsulated sermonas. Encapsulated means that my body can’t absorb the fluid. Seromas are collections of fluid that can be inflammatory/infections/lymphatic. I also have lesion that is necrotic tissue and will likely continue to persist. These are all very serious issues and make my symptom reports credible.

It is easy to become complacent. But it is hard as hell to live resigned to the diagnosis. Sometimes, that is the only choices. Now I have new choices.

My girls were with me when we saw the surgeon. They wanted to be there to make sure Dr. K did not suggest unnecessary surgical intervention. Being at nearly 30 operations, that is a reasonable request from my children. They have seen so many operations go wrong. The problem this time is that the issues inside my chest are not safe. They are likely causing fevers and contribute to me feeling sick all.the.time. As Dr. K explained that they have learned a lot since my last surgery about how leaving open space in a reconstruction site is bad. The girls started crying and then tuned him out. His prognosis led to a recommendation of a highly invasive surgery to repair these problems. I don’t want to explain the process of the repair, but I will say that it will require a two day inpatient hospital stay, two drains on each side for 4-6 weeks and no use of my arms for the same amount of time. We left that appointment without consent as I needed to talk to QB1.

Three days later, I sat with Bill and we talked for an hour. We had established a golden rule to my medical care which said “no surgery unless it is required to save my life”. This intervention is not a matter of life and death right now. Down the road, the seromas could make me sicker, even septic. And we also talked about the positive side of potential recovery from this debilitating pain and a massive improvement of my quality of life. We also discussed that we now know that I respond to meds that treat autoimmune disease for the global systemic troubles. At the end of the hour, QB1 said he felt nauseous but he agreed with the surgeon and felt I should proceed with the surgery. In the end, I will have very little of my reconstruction left. I am ok with that. I hate them anyway. I look at them and see “DISABLED”.

September 4th 2019 I will go back to the operating room. I have known for a long time that my chest area issues were not only RSD and it was up to me to advocate for myself to insist we were sure of our plan. Things change and I refuse to be complacent.

It seems to me “that thing I have to do” as we say in my house will reverse the clock. I will go from DISABLED to being sick again for awhile. I am terrified of this. I have prayed, internalized, thought about the plan 2000 different ways and in the end we know what needs to be done. I am 42 years old and I am not ready to throw in the towel, especially when I have serious issues that need addressed. There is no guarantee that I will make it all the way to wellness. But there is a chance. A damn good chance. Because after the surgery, we will start treating the rest of my symptoms with autoimmune disease drugs.

My team of docs and family are all throwing the Hail Mary pass to bring me back to wellness. I have to find myself again. I have to feel relevant again. I have to have purpose again. So on September 4th, we are throwing that pass and I am going to catch it in the end zone. I am going to fight like hell for wellness.

I share this for two reasons. The first is that many of you have been on this journey with us for a long time and I feel it is important to bring my village into the game. Which leads me to the second reason I share.

I am going to need help. My family has us covered for the immediate post surgical care. But in order for this to have the highest chance of success, I MUST FOLLOW DOCS ORDERS. While those drains are in and my body is healing, I can’t mess around. I am not to use my chest muscles for anything for 6 weeks. Which means I really can’t use my arms. Abs will be driving so we are good for day to day stuff. Plus, I will have home care and home cleaning assistance.

I am doing something I rarely do. I am asking for help. Abs is still playing on the USA Elite Softball Team and I will not let this stop her. We need to go to Strausburg every weekend (either Saturday or Sunday). Abbey will drive our car, we just need another adult to tag along for those games to keep me from pushing too hard or to ride with her if I am unable to do it. I do not yet have the schedule, but when I do I plan to post a “volunteer” sign up genius. I am going to be responsible and understand that I can’t do this on my own.

As always, my primary goal is to not affect the girls and their progress. This is a critical year for Abbey and softball. I know we have enough support to get her through the fall season so she does not have to leave her team. That is not an option. Abbey can help me cover Anna’s volleyball schedule.

I will have the house ready with easy to eat foods, but I will also put out a volunteer sheet in the event anyone wants to cook dinner or just come hang out or help with a shower. I am doing this because this is what my village always asks me to do and I always become too stubborn and feel like a burden. This time, I can’t afford to do that. It is my last chance at wellness and I will take all the help I can get. I know that in the moment, I will try to turn away offers for help and I ask all of you to simply take away my power to turn you away. I need to heal properly and I need help to do that.

If you have read this all the way through, I know you are part of my village. I know there will be worries and opinions about this, but I ask that everyone trust in the work we have done over the last year to reach this point. I need nothing but positivity to get through this and so do my girls.

Ok, so that was a heavy message to deliver. I sit in Kentucky in severe pain from using my arms to drive (even though Abs and I have split time) and am reminded why I have to do this. Some might wonder why we have chosen right now to look for potential collegiate homes for Abbey. This is why. September 1st the recruiting gates open and we need to have an idea of where Abbey would like to end up. There is only one way to do that. Visit schools. This is a terrible time to be traveling. Another difficult decision and one I do not regret.

If you have read to this point, than you for being my village even when I closed my village. It is opening back up and I pray some of you will come back in and surround us with love and support during this really challenging time.

We are scared.

We are hopeful.

Hopeful wins every time.

#thankyou