Life and stuff

I haven’t posted since October, due in part to being busy, but also because things have not be that great and I don’t want to always complain. So I guess I will give you guys a little life update…

October was hard. My fall break was spent in the hospital watching Timothy fight for his life and be almost overcome with immense pain. It was rough week. He had lots of unforeseen complications and received his PICC line. We came home from the hospital not entirely prepared for this new road we have begun to travel.

Fast forward to mid-November, we were fighting for approval for the new drugs that the PICC line was placed to administer. He’d received not PICC line care instructions and we were left adrift waiting on insurance…yet again! By the grace of God the meds were finally approved and he escaped any type of PICC line issues, i.e. being clogged or infected from almost on month of disuse.

The meds have not been the lifesaver we were promised. The “cure” has become worse than the illness in a lot of ways. Timothy has had nothing but nausea and vomiting for almost 2 months. They keep telling us that “it’s normal and it will pass”, but it isn’t passing.

I am on Christmas break now and it’s been more of the same. Illness, vomiting, staying home, cancelled plans…the list goes on.

He’s discouraged. And I am discouraged.

I have found myself pulling away from people more and more because no one seems to really understand the stress and strain of watching someone you love vomit and retch for hours. I feel so helpless. I can’t fix this…no matter how hard it try.

I have two friends who faithfully check in on me. They are my lifelines. And they don’t even realize it. Without their relentless love for me, I don’t know what I would do.

I find myself becoming bitter at times. And I find myself having to pray for patience and calmness more and more frequently. I find myself struggling with being a 46 year old woman who’s whole life has turned upside down. I find myself lamenting what could have been. I feel awful for these thoughts. I mean I am not the one dying. I am not the one who has lost 75 lbs from not being able to eat. So why am I so angry and bitter!? I feel selfish all the time. I feel discouraged. I feel like I am a bad person for feeling all these feelings. So I just pull back and isolate more and more each day. I know it’s not healthy, but it’s all I can do right now.

I found an online support group and it has become such a help. It’s comforting to know I am not alone in all this craziness that is caregiving and dealing with anticipatory grief.

I hate seeing my husband cry and beg to die. I feel so much sadness seeing his body break downs further and further. I don’t have a road map for this journey. I have faith in Christ. I have prayer. But sometimes I just want to scream and curl into the fetal position and cry. But I know that won’t help.

Well, this life update took a turn to the somber, didn’t it?

But that’s what this journey has been. We started out on one path and then it turned into Spaghetti Junction and we are now just holding on for dear life and praying to God that we make it to the end alive.

What I look like trying to figure out how to navigate this craziness!

Life and stuff

I haven’t posted since October, due in part to being busy, but also because things have not be that great and I don’t want to always complain. So I guess I will give you guys a little life update…

October was hard. My fall break was spent in the hospital watching Timothy fight for his life and be almost overcome with immense pain. It was rough week. He had lots of unforeseen complications and received his PICC line. We came home from the hospital not entirely prepared for this new road we have begun to travel.

Fast forward to mid-November, we were fighting for approval for the new drugs that the PICC line was placed to administer. He’d received not PICC line care instructions and we were left adrift waiting on insurance…yet again! By the grace of God the meds were finally approved and he escaped any type of PICC line issues, i.e. being clogged or infected from almost on month of disuse.

The meds have not been the lifesaver we were promised. The “cure” has become worse than the illness in a lot of ways. Timothy has had nothing but nausea and vomiting for almost 2 months. They keep telling us that “it’s normal and it will pass”, but it isn’t passing.

I am on Christmas break now and it’s been more of the same. Illness, vomiting, staying home, cancelled plans…the list goes on.

He’s discouraged. And I am discouraged.

I have found myself pulling away from people more and more because no one seems to really understand the stress and strain of watching someone you love vomit and retch for hours. I feel so helpless. I can’t fix this…no matter how hard it try.

I have two friends who faithfully check in on me. They are my lifelines. And they don’t even realize it. Without their relentless love for me, I don’t know what I would do.

I find myself becoming bitter at times. And I find myself having to pray for patience and calmness more and more frequently. I find myself struggling with being a 46 year old woman who’s whole life has turned upside down. I find myself lamenting what could have been. I feel awful for these thoughts. I mean I am not the one dying. I am not the one who has lost 75 lbs from not being able to eat. So why am I so angry and bitter!? I feel selfish all the time. I feel discouraged. I feel like I am a bad person for feeling all these feelings. So I just pull back and isolate more and more each day. I know it’s not healthy, but it’s all I can do right now.

I found an online support group and it has become such a help. It’s comforting to know I am not alone in all this craziness that is caregiving and dealing with anticipatory grief.

I hate seeing my husband cry and beg to die. I feel so much sadness seeing his body break downs further and further. I don’t have a road map for this journey. I have faith in Christ. I have prayer. But sometimes I just want to scream and curl into the fetal position and cry. But I know that won’t help.

Well, this life update took a turn to the somber, didn’t it?

But that’s what this journey has been. We started out on one path and then it turned into Spaghetti Junction and we are now just holding on for dear life and praying to God that we make it to the end alive.

What I look like trying to figure out how to navigate this craziness!

Life as we know it.

If Tim’s illness has only taught me one thing, it would have to be life, as we know it, can change in a second.

As I type this blog, I am shrouded in darkness, listening to machines beeping and my husband’s snores, interspersed with soft moans of pain. I am trying hard to be silent, so as to not disturb him. We are, again, in a hospital room. And we are, again, facing a health crisis and, ultimately, his mortality. Life as we knew it, pre-PPH, is but a shadow somewhere far removed from our current situation.

Most days I feel like I have things under control. I feel like I am managing the changes in my life’s role well. I feel like like I am doing okay. But today reminded me that I really am not in control of anything. And it was a sobering realization.

Yesterday was hectic, but it was an amazing day with my husband. Even though we were trapped in a cubicle in the ER for almost 8 hours, we had a great time. We chatted, we kissed (gasp!) we held hands, and we watched crappy reality TV. It was a pretty good day. The good day lasted into the night until Tim’s joints began to ache and then swell. By around 1 am, he was writhing in pain. In what seemed to be an instant, life as we knew it, sweet and loving, changed.

Timothy and I in ER before things changed…

All day today, he’s been in terrible pain. He had to endure another heart catherization and the placement of a port for a new, stronger medicine, to fight this evil disease. All of this was on top of him being in intense pain. It has not been a good day for Tim. And honestly, it hasn’t been a good day for me. I sat in a hard chair for almost 8 hours, with no food, cold, un-showered, and worried beyond belief. It’s been a crappy day for both of us.

Timothy in incredible pain.
*This photo is used with his permission.

I have talked to other caregivers and heard them talk about the mental toll that caregiving can take on you, but until today, I guess I really didn’t fully grasp it. Today my husband broke my heart and was so harsh with me for most of the day. He has said very unkind things to me and I know, logically, that it was from being in pain, but it still hurts. Life as I knew it, having a husband that is almost always kind and nurturing, is not the same as it was, and I am so broken because of it.

I love Timothy with all my heart. And I will stand by his side until he (or I) breathe our last. But our relationship has been irrevocably altered by this disease. The roles we have had for the last 7 years have changed dramatically. The rhythm of our days is no longer the same. The mutual things we enjoyed have changed. Life as we knew it has changed forever.

I feel guilty for being so upset today. I am not the one who is fighting for breath and life, Tim is. He is a Warr”ior”. I am in awe of how he continues to fight this disease, while working to spread awareness and educate others. I am just here loving him and trying to support him. But I feel so inadequate some days for the task ahead of me. I am trying hard to be strong and not fall apart, but in many ways, I think I may be in mourning…

Is it possible to mourn the life you used to know?

Love…

I can’t control how people treat me. But I can control how I treat others and how I let their actions effect me. I will love…💜

The barometer for loving God is loving others without worrying if they love you back!

—Chris Minton, the most awesomest pastor

Most people are so caught up in their own worlds to acknowledge what’s going on in the lives of those around them. And many, myself included, don’t realize how our actions the lives of others. Our words and actions have effects on others whether we realize it or not. Our words and actions should never leave those around us wondering if they are loved or not.

I’ve learned so much during the upheaval of my family’s life these past several months. But the greatest and hardest lesson I’ve learned would have to be; who I can depend on and and entrust with my heart…who loves me and who doesn’t.

I’ve found that people that I thought had my best interests at heart and were invested in in my life are still in my life but not in the same ways as before. People that I used to be unguarded around have caused me to build walls and hold back the “real me”. It saddens me but I’ve learned that I can’t make someone love me. And I refuse to chase after people and try to make them “like” me. I’ve realized I’m worth so much more than that! I chose to love them but not let them control my thoughts and emotions.

I’ve learned that people I didn’t realize loved me as much as they did, really do. And they have shown up when I needed them the most and in the most surprising of ways. I’ve learned to cultivate these rare friendships and treasure them. I can be Mandi, whole and real, with these people and have no fear of judgment or reproach. It’s like balm to my soul to be with these people—my people.

I’m an incredibly blessed woman. I have a few really amazing friends, an awesome family and a faith in Christ that will sustain me through the times that I feel like I just can’t keep going. I will remind myself, daily, hourly, and by the minute, that I am living up to the meaning of my name…worthy of love.

When the tears fall…it’s okay.

I’ll be honest, I have cried more in the past year and a half, than I have in my whole adult life. I am just not (typically!) a crier. But since the official diagnosis, one year ago today, I have cried buckets of tears. And at the most random of times!!

But I am learning that it is okay. It is okay to be sad. It is okay to mad. It is okay to be confused. It’s okay to anxious. It’s okay to be (fill in the blank).

Just don’t stay there!

Today I cried for the loss of closeness, physically, I am able to have with my husband. Since he’s been sick, things have changed. We have to sleep in different rooms because he uses oxygen now and rarely sleeps through the night. He also coughs a lot. And many days (and nights) his body is in just so much pain that it hurts him to be touched. I have to have sleep to function, so we’ve chosen to sleep separately, for both of our comfort. But it breaks my heart. I miss the warmth of his embraces at night. I miss his arms, that were once so strong and muscular, wrapped around me tightly when I had a bad dream. I miss so many things. So today, I cried for that loss…and it’s okay.

Friday I cried on the way to work. I was overcome with need to pray for some really dear friends who are going through some really tough battles. It is so easy for me to get so wrapped up in my family’s troubles and neglect to reach out and love on those who love us. So on the way to work Friday, I prayed for, texted and cried for the people God laid on my heart. And it’s okay.

Thursday I almost cried at a friend’s house. The laughter overcame me and I almost cried and wet my pants! Laughter, with amazing friends, to the point of tears is like a magical balm that soothes the soul. I have to remember that even in the midst of the sorrow I am facing, it’s okay to laugh…it’s okay.

Wednesday I cried when I heard a beautiful song on the radio. It reminded me of when my husband used to sing. It brought me to tears knowing that he is unable to use his God-given gift anymore. My heart breaks for him because I know how much not being able to sing grieves his soul. I just wish he had gotten the chance to use his gifts more. I cried for his loss…and it’s okay.

Monday I cried on the phone with a friend. I had received some unhappy news and I was just overwhelmed with sadness and anger and I didn’t want to bring it home to my husband and add more to his already full plate. She let me fuss and gripe and be angry for a while. Then she reminded me that it would all work out. I cried out in anger and frustration…and it’s okay.

I guess, in some ways, tears are God’s way of cleansing us. They come at times we don’t always expect or welcome. But I have found that after a good cry, I often feel much better.

The Bible tells us many times that God hears our cries and He is there for us. Even Jesus wept! He cried for his friend, Lazarus, who had died and he also cried in the garden in sadness and anguish over His impending death.

So remember, it’s okay to cry…just don’t stay in that moment long. Remember that after the rain comes the sun. After the dark comes the light. And after the sadness comes joy!

It gets lonely sometimes…

It’s 9 pm. My house is silent except for the sound of Timothy’s oxygen machine. I sit alone in my sitting room. I have done all the chores I can do, eaten dinner and tried to keep myself occupied quietly so as not to disturb his much needed sleep. He is exhausted most of the time now. And I want to make sure he gets as much rest as he can. But it’s difficult sometimes.

I am lonely.

Jorja went home Tuesday, so there is no one to talk to now and I miss her so much. Sam went home yesterday. So now its just me and I am sitting here trying not to get too lost in my emotions.

My world is so different now.

Nothing about my world is like what I had imagined it would be at this stage in my life. I never thought I would be 45 years old watching the man I love struggle to live each day. It takes a toll on both of us some days.

If I am honest, I am scared most of the time. Scared of the “what ifs”. What if he has another really bad episode? What if I freeze and don’t know what to do? What if…what if…what if?

“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

Joshua 1:9

Scripture tells me that God is in control. But sometimes I am afraid. Loneliness is nothing but fear. I know this. I believe this. But sometimes it gets the best of me and I get discouraged. Tonight is just one of those nights.

What am I going to do about it? I will continue to sit here. Praying and trying to make the best of a sucky situation. I’ll be okay. I am stronger than I realize. God has provided me with some great people to be my support.

But the nights are hardest.

I’m sorry…

The hardest part of Timothy’s illness, for me, hasn’t been the work that I have had to do to make sure he’s healthy or missed opportunities for fun or even the realization that he’s dying. The hardest part for me has been him constantly feeling like he has to apologize for being sick. It breaks my heart each time he says these words…I’m sorry.

Today we had plans. We were going shopping for a new book bag for Jorja, having lunch as a family and getting some fresh fruits and veggies for Timothy since these are the only foods that seem to taste good to him anymore.

The day started out okay, but on the drive to town, Timothy complained about feeling off and very weak. He had a brief hospital stay last week, so I assumed that this stemmed from that. We went to do our second errand and he began violently vomit in the car. We keep vomit bags with us everywhere, so this was not an issues. The issue was, between each gag, he cried, “I am sorry. I am so sorry!”

This is something that has happened often since his diagnosis. Especially, when he’s really ill. He begs for my forgiveness for cutting our life together short and impeding our dreams. He begs my forgiveness for making me become the “breadwinner”. It breaks my heart each time he says it. And it takes all I have not to dissolve into a puddle of tears.

I can’t seem to convince him that he has nothing to be sorry for. When I made my vows to love him, I meant it. I meant that I would love him, in sickness and in health, until death parts us.

I know he’d stay by my side of the tables were turned. I’ve seen evidence of his love for me for the past 7 years. He has loved me like no other person I have ever met. It is my honor to love him. I’ve loved him at his strongest and I intend to continue loving and caring for him at his weakest.

I am the one who needs to say “I am sorry”. I am sorry that I can’t fix this cruel illness that has robbed him of quality of life. I am sorry that I don’t always respond with patience and kindness when I am stressed out. I am sorry that I sometimes focus on the mundane details of life, like finances and job worries, instead of spending quality time, making the most of the time we have together. For this and all the other times I have failed…

I am sorry.

Laying in the sun…

I feel like a fraud…

I haven’t blogged in a while. I have had some valid reasons. I finished my first semester of my master’s program and made all A’s! My daughter is home for a visit. And I have been savoring time with her. I have been spending time with my family and Timothy. As well as catching up on some rest before school gets back in session.

I have also had some reasons not to blog that I was afraid to face. But here I am now…fingers poised over the keyboard. About to tell the truth. Always scared that it will be misconstrued. But still I type.

I cried for the first time in a long while 2 days ago. It was the second evening after my husband got his oxygen prescription filled. After he had spent so many months gasping for air, his lungs actually got some vital oxygen and for the first couple of days, I had my Timothy back.

His lips lost that bluish tinge that I had grown accustomed to seeing. He smiled. He laughed. He and I had long conversations without pauses for breath. We walked through a small local grocery store, slowly. We spent a couple of evenings being like we used to be…sort of.

There were still long pauses because his strength is so depleted from muscle atrophy and weight loss. We couldn’t stay out long because he still gets tired very quickly. But for a couple of days, we had some normalcy.

But in the midst of this normalcy, I let my guard down for a moment, and in that moment, all my fears, sadness and anger came pouring out of my eyes. And I cried uncontrollably for almost an hour.

If I have learned nothing else from this past year of watching the love of my life suffer so, it is to guard my emotions. Because once they are unleashed, they are hard to wrangle back to a place of functioning.

For the past year, I have been strong. I have dealt with the fact that my husband has been given a terminal diagnosis. I have dealt with my daughter moving away. I have dealt with all the financial issues that this illness has thrown at our family. I have dealt with the realization that I will most likely be alone in a few years. I have put on a brave face. I have smiled when I wanted to scream. I have made jokes and laughed when things weren’t funny to keep from becoming hysterical. I have done everything I can to keep sane.

Does anyone notice a pattern with that last paragraph? It was all about me. What I did. What I was dealing with. I, I, I, I!

I realized this on the evening that the tears came flowing out so freely. This isn’t about me. None of it is about me. Yes, it effects me. But ultimately I am just along for the crazy, sad, scary ride that PAH has made for Timothy.

He has had to come to terms with so many things. Losing his health. Losing his livelihood. Becoming almost completely dependent on others. Not being able to do anything he used to enjoy. Realizing that he is dying. Maybe that’s why they call it a terminal illness…you have to come to terms with your illness and the way it changes your life.

The moment I started crying was out of no where. It just struck me that I was going to lose my husband. And it broke me. I realized that our lives will NEVER be normal again. And I began to mourn for that loss. I realized that I am now his caretaker. And it scares me to death that I will mess up and cause him more pain. I realized that I am responsible for seeing out his final wishes. And that is terrifying. I realized that our relationship is forever changed. We have memories of times where we were carefree and silly. But we can’t go back to that. Our life now revolves around PAH. And that made me sad.

Why am I telling you about crying? Because over and over I have people tell me how strong I am. Or how amazing I am dealing with all of this. When honestly, most days the dam of tears is close to breaking. I am just barely holding on.

But that is okay. Because I am going to be okay. I have to be. I don’t have any other choice. I am madly in love with my sweet Timothy and God placed me in his life for a purpose. And maybe part of that purpose was to be here with him to love him and be by his side as he faces the hardest battle of his life.

So, for now, my tears are behind the dam again and I am focusing on the good times instead of the tough ones. Let’s hope the walls hold for a little while longer.

Me and my Timothy at our happy place.

What is normal anyway?

As I type this blog, I am sitting in my recliner, as my husband sleeps soundly. It is 3:40 pm on a Saturday afternoon. This is our new normal.

I woke up this morning at 5:30 am. Got ready and went to graduation. Came home around 10:45 am, picked Timothy up and we went to the grocery store. Came home and prepared lunch and dinner for tomorrow. He’s now exhausted and done for the day and I am teeming with energy that I have no real way of expending.

So many of our days are now spent in the quiet of our home.

We don’t talk much anymore because extended talking seems to weaken him more and more each day.

Trips to places far away are a thing of the past since CHF (congestive heart failure) causes extensive swelling of his feet and legs upon sitting in upright for extended periods of time.

Going places now requires advanced planning. Is it wheelchair accessible? Is it outdoors? How far is the entrance from the parking? Is there parking? Are his meds packed? Do we have snacks? Barf bags?

So many things I took so for granted are the hardest now. I could kick myself for not soaking in the joy of enjoying time with my husband.

I could kick myself for always being such a stickler about spending! I should have heeded to Timothy’s spontaneous love of travel and adventure when we could travel freely and with enjoyment.

I have so many regrets. So many times I look back at our lives together where my Type-A personality prevented us from making memories that could have lasted a lifetime.

So now we sit. This is our new normal. And while it’s different. There is still joy in it.

My husband is sick, but he’s alive and with me. I still get to see his smile and hear his occasional laughter.

We are still so blessed. And I fully intend to embrace the joys in our new normal.

Time away…scary times…still blessed…

Sorry I have been MIA…

I haven’t blogged in a while. It’s not because I haven’t had things to say. I have plenty. It’s that I just don’t always know exactly how to put what I am feeling/experiencing to words.

I am tired. Bone tired. It’s the end of a hugely chaotic school term. The kids are done. I am done. We all need a break.

Home has been tough too. I am finding that being a caregiver is the hardest job I have ever had. Unlike other jobs, there is no goal to strive for. You are basically in a waiting game with time. You are working so hard to make the person you love comfortable and happy in an otherwise uncomfortable and unhappy situation. It’s heartbreaking and backbreaking. But I am so thankful that God has allowed me the honor of caring for Timothy in his time of need.

My parents took us away for a weekend. It was hard work making sure everyone was taken care of. Both my mom and dad have disabilities, coupled with Timothy’s, there were moments on that trip where my son and I were scrambling, but oh, the amazing memories we made! I am forever grateful for the love of amazing parents. I will post a separate blog about this at a later time.

We had an awful scare Friday night. And I have been kind of freaked out since. Timothy had a really bad coughing spell, after choking on some water. He coughed really hard then just flopped forward in his chair, completely doubled over. He was not moving or breathing. I rushed over and pushed him back into a reclined position. His eyes were bugged out and his tongue was protruding. He was not breathing. I tilted his chin upward. He gasped and came back to consciousness. He had no recollection of being out. All this happened in the span of less than 30 seconds. To me, it seemed an eternity. All I could think of was, “He’s gone! Oh, my God! He’s dead!” I haven’t been that frightened in a while.

I reached out to his amazing doctor, who answers texts at 9:30 pm. He said it was called Tussive Syncope. Basically means you pass out from coughing. It’s very common in people with advanced lung diseases. He assured me that it was not cause for a hospital visit, unless Timothy was still coughing (which he was not). But it was scary, nonetheless!

Mother’s Day came and went. Spent some time with my parents. That was great. FaceTimed with Jorja. Sam came to church. Ate way too much food. All in all it was a pretty okay day.

There have been no great moments of things to blog as of late. I am just taking it day by day. Dealing with Timothy’s health and trying to hold it all together is challenging. I am really trying to stay positive. I know I am so incredibly blessed. But some days are harder than others. Some days I just want to stay in bed and pull the covers over my head and cry. But that is just not me. So each day, I put one foot in front of the other. Pray for strength, peace and joy and keep pressing forward.