Bad luck Luke

I got some bad news today.

My brother Luke was diagnosed with kidney disease. It is irreversible. He is not to the point of dialysis and hopefully if he keeps on a strict diet it will not progress further.

How could something like this happen? My brother is a health nut. Why??

Apparently all it took was being very sick, taking too much OTC pain reliever, and becoming dehydrated to lose over half of his kidney function. Without a family history of kidney problems, the doctor could offer no other possible causes. Who would’ve guessed something like this could happen to someone young and healthy? Did lifelong intense stress weaken his kidneys?

Today when I found out about my brother I felt a lot of anxiety. But the strange thing is that I felt anxiety about something else. The first thing I did was worry about the garbage. Today is garbage day and I had this irrational fear that I threw out my son’s wallet when I grabbed the garbage out of his bathroom. Totally crazy!

Then I started to feel anger. Why would God allow this to happen to my brother! Then I felt sadness. I almost cried when I thought what it would be like to watch my baby brother die. What about his family? Life is just not fair. Why do bad things happen to good people? Why do healthy people get sick?

Life, it’s taking the cards you have been dealt and playing your best game. It’s lifelong growing, building, and change. It’s not guaranteed to be pain free, but if you give it your best shot it’s worth it. Time is short and I want to look back satisfied that I did the best I could. I did not give up when things got rough, instead I tried harder.

I want a rock solid marriage. That is something else worth fighting for. Someday I might have to ask him if he loves me enough to donate a kidney. They are the same blood type if that matters, whereas the rest of us are not.

This post was originally written back in November. It was one of the drafts I saved because I was not ready to accept this much less post it. It’s hard to think of my brother as sick. Who knew that in a few months I would follow him down the path of illness. I feel bad because his life has been very difficult. It’s not fair. I wanted so much more for him. 

 

Gratitude week 20

I’ve been struggling a lot lately, so at this point having a weekly gratitude list is probably more important. I have to remind myself of the good things that are happening in my life.

The wellness nurse put me on a liquid diet over the weekend to try to calm my gut. I lost 7 lbs over the weekend. I haven’t been feeling well and I’ve been weak and tired to boot. It takes the energy of a 5k just for me to put the clothes from the washer into the dryer. Sometimes I have to take a rest after doing nothing.

This past weekend I packed up all of my running gear and put it in another room. It’s a painful reminder of what I cannot do. I haven’t cancelled the 50k I was planning on doing with my cousin late summer. Maybe, a miracle…

It’s been hard because I’ve always been a go go go person, type A all the way. I’ve really been trying to hide from the world how sick I am. It’s been pretty easy to do with this virus. I want people to remember me as strong and healthy.  I feel so discouraged because what I once was no longer is.

To make matters worse, the weather hasn’t been cooperating here in Wisconsin. We had snow flurries on Mother’s Day and record low temps this past week. Since yesterday it has been very cold with temps struggling to reach 50 degrees. It’s also been very windy and by the end of the day we are supposed to have a total of 3 inches of rainfall from the last couple days of rain. Everything is flooded. The weather guy keeps saying every week since the beginning of April that the following week will be nice but it never is. I really hope that the weather makes my gratitude list next week.

Here is my list for this week:

  1.  My daughter Angel made a surprise visit home this past weekend. She hasn’t been home in over two months. It was very comforting to have her around when I wasn’t feeling well.
  2.  My baby Arabella turned 17 this past weekend. She ended up having a nicer day than she thought she would.
  3.  Since Angel got a nice job, she decided to lease a vehicle and gave us back our old car for Arabella. Although the car is older than she is, Arabella now has a car. It was nice to see her all excited about it and take the time to vacuum and care for it. Now Arabella doesn’t have to borrow my car for school or work. I will not have to drop her off or pick her up anymore which will be less stress on me.
  4.  Today I can eat something besides bone broth. Yeah!
  5.  I talked to Paul’s friend who has colitis and got a lot of advice from him. It does feel good to know I am not alone in this despite the fact I wouldn’t wish this on anyone.
  6.  I had good appointments with the wellness nurse, counselor, and mentor this past week. I am making progress on my healing although at times it doesn’t feel like it.
  7.  Estelle found her lost Nintendo Switch. I was very worried once it went missing that it was stolen.
  8.  I got my new t-shirt in the mail.
  9.  Paul put our sailboat in the water last week. With all of the wind and rain it hasn’t been sunk, damaged, destroyed, or cast away yet.
  10.  My aunt tested negative for Covid. Yeah, it’s only pneumonia! Seriously though, my uncle has lung issues and they were around other older family members with health issues. So it is a good thing. I was worried that the coronavirus might wipe out several of my family members.

Isolating fears

I wish life was back to normal. Or perhaps I should say I wish I could take my favorite things from my old life and mix it with the best things of this new world to form some sort of utopian society.

Since this whole thing started my mom has lived in great fear. She is so terrified that I don’t think she will leave the house if it means being around other people after the safer at home order is over in two weeks. I didn’t say anything up until this point but I might have to. I figured how can it hurt her if she wants to stay at home with my dad and autistic brother.

Now she is talking about getting a mask with a filter in it to wear under her cloth mask. She found some gloves to wear. This is only if she has to leave the house. Other people have been buying groceries. I’m wondering now if locking herself away is only temporary.

She does leave the house to go on walks with my brother Matt. The other day I was on the phone with her while they were out walking. She saw some kids on the path and freaked out. They quickly walked in the opposite direction in sheer panic.

It took me back to when I was a kid. My brother heard voices that told him to attack little girls. There was a period of 3 years where my brothers and I were homeschooled because Matt was psychotic. We avoided public places. If we were out and little kids would show up, we had to quickly pack up and head out. Nothing was wrong but it would only take a second for Matt to attack someone. Thankfully he is medicated now.

My grandpa had a tree nursery next to our house. Sometimes customers would show up looking at trees. We always had to keep on the lookout. If a potential customer showed up with little girls, someone had to call grandpa and then run out to meet them before they came to our house. Someone else had to make sure that Matt did not see the children outside. We had to be hyper-vigilant and work as a team to make sure no one got hurt.

Now I see the same type of paranoia in my mom. The children are potential threats. Even if they seem healthy they could be carrying a potentially deadly virus. Even if Matt seemed fine, in a matter of seconds he could potentially hurt someone. Even if it remains unseen, the threat is very real.

I see my mom very frightened and almost in a flashback of the other time we kept in isolation. I see the parallels of the fear and isolation.

I don’t think it is good for my mom’s mental health to stay in isolation much longer. My dad is very difficult to live with and needs care along with my brother.

I think my mom is going to stay in fear and isolation for a long time, longer than it is safer at home. My husband thinks she will stay in isolation until a vaccine is developed. Like my mom is going to trust a vaccine that is put out in record time. I probably wouldn’t even trust that.

I don’t want my mom to spend the last few years of her life not living out of fear. It’s hard to see her so afraid. I’m going to have to say something if it continues much longer.

Certain uncertainty

If we traveled back in time to January 1st of this year, I would imagine quite a few of you had inspiring goals and new years resolutions for the new decade. It’s 2020, finally we would have a clear vision of the future we wanted for ourselves like never before. This year was going to be the best.

I don’t know about you, but I don’t really like change. Maybe it’s not even change that I don’t like. I mean, I’m always striving to be a better person and that involves change. What bothers me more than anything is uncertainty and not knowing what is happening.

If you asked me in January what I would be doing this weekend, I would have told you that I would be attending my daughter’s college graduation. At the time, nothing except death or being deathly ill would have kept me away from her special day. I found the perfect dress to wear. Maybe it was a little too dressy, but it was on sale. I should’ve been going in to have my nails done to match the dress and getting my hair done.

But that brings me here to today. I won’t be going anywhere anytime soon. Me, the person who has to have a plan. The person who schedules spontaneity 6 months in advance.

As most of you know, I just went through a 10 day bout of colitis. I went through expensive and uncomfortable tests to get some answers, some certainty, about my health. The morning of the procedure I brought along all of my paperwork from the wellness clinic. The doctor brushed me off with the comment that he does not approve of me seeking help at a wellness clinic and refused to look at the tests that were done.

I thought that the doctor’s bedside manner was horrible, but if he had the answers and could help me I didn’t care. When I called the doctor’s office on Monday expecting answers the nurse said that I had colitis but they have no idea why.

The doctor’s office told me something was wrong with me but they have no idea what. Is this going to happen again? What can I do to prevent this if I don’t even know what caused it? What the hell is going on? I was sick and all you can tell me is that I was sick?? Yesterday I fell into a deep despair. What is wrong with me? I wanted an expert to give me answers so I would know what is happening in my life. I want a plan that I can follow. I want to have a map to see where my life is going.

If I learned anything in 2020, it’s that everything is uncertain. It’s been a big lesson for me to learn. Everything I took for granted as certain has changed. It’s okay to grieve what has been lost. Then it’s time to continue on down the dimly lit path.

It’s time to throw away my security blankets of structure and routine. The only thing I can cling onto is that uncertainty is certain. That is now a big part of my life. I can’t be afraid. I have to think of this as an opportunity for growth. It’s time to strengthen the non-dominant hand I’ve been dealt. Maybe going with the flow won’t be all that bad. I DID say I wanted to be more easy going and laid back. Of course I wasn’t expecting to achieve that goal by having everything literally wiped off my calendar.

I’m being forced to change but maybe I will be a better person because of it. At least that is what I’ve been telling myself.

Gratitude week 18

Once again, this past week has been really rough. I felt very sick for 10 days. I was even up 3 to 4 times a night to run to the bathroom. I got very little rest and my body feels weak. The preliminary test results are showing that I have some form of colitis.

Sadly, the doctor’s office called me on Friday a few minutes before closing. When I called back I got the answering service. I didn’t even receive a call back until 10 on Saturday morning from the nurse. She said the doctor wanted to treat me with a steroid but he wasn’t going to be able to talk to me until Monday morning.

The sun was shining and I felt pretty good yesterday. I probably overdid it with the yard work. I wanted to go for a run today but was so weak and tired I could barely walk. I started to feel pretty down. My body is not doing what I want it to do. How long will it be before my muscles start to atrophy? I take pride in long distance running. I spent the last 10 to 15 years toning my body. My arms have great definition for a woman in her mid-40’s. It makes me sick to think I might have to throw away all the work I put into being athletic.

I started to worry that I was going to become a burden to my family. I like taking care of things, not having others take care of me. I have plans to travel and more races to do.

Then I started to panic today because I realized the doctor intends to treat me with immunosuppressant drugs. I would do ANYTHING to not have to suffer through another episode of the kind of pain I just experienced. However, now is probably not the best time to be on immunosuppressant drugs.

This past week someone from our church died from the coronavirus. He was my husband’s age. I would be willing to go on medication to suppress my immune system to never go through what I went through again. But I am afraid.

Also, what about working?

So, I am going to try to be grateful for 10 things this past week….here goes..

  1.  I should have my health questions answered this week.
  2.  My aunt Jan sent me a get well card in the mail. It feels good to have people thinking and praying for me.
  3.  My husband helped take care of a lot of things while I was sick.
  4.  My daughter was very behind on school work and my husband helped design a schedule to help her get caught up. Plus he helped her with Algebra 2. He is a great teacher and great at math which I appreciate since I am not.
  5.  The year of April finally ended.
  6.  The weather was perfect this weekend which always makes life better. Winter will be back tomorrow and for the extended forecast. Yuck!!
  7.  I felt pretty good yesterday.
  8.  I bought a funny shirt. It says Pink Freud, The Dark Side of Your Mom. Consider it a Mother’s Day gift for myself. I love Pink Floyd and went to college for psychology, so Freud..
  9.  I broke down and ate some macaroni and cheese. It was the first time I ate dairy in 9 months. I figured I couldn’t feel much worse than I was already feeling and I was right.
  10.  With technology, I am still able to do a lot of the same things everyone else is doing. I am not at home by myself missing out. I can check out new shows and movies. I can still see my mom and daughter although I cannot visit them.

Gratitude week 17

The past week has been very rough. I guess I’ve been saying that a lot lately.

I am now on day 6 of being sick. I haven’t slept much because I am up multiple times a night to use the bathroom. I am not well. I’ve had to take all my goals, dreams, and hopes for the future and put them on a shelf. Or maybe I have to give them up forever. I’m starting to grieve that my old life is probably over.

There have been times I’ve curled up in pain in a fetal position on the floor tears cascading from my eyes. I’ve had a fever off and on and I feel it starting to climb back. I don’t know how I am going to make it through the prep tonight for my procedure. I’ve been thinking about that a lot, death. Sometimes it feels so close that everything still left inside me tells me to prepare.

I don’t have much time to talk, nor much energy. So, that being said, here are my ten things I’m grateful for this week.

  1. Soon maybe I’ll finally have the answers for what is wrong with me.
  2.  I reached over 750 followers on my blog. I am thankful for you my readers and friends who are supportive of me telling my story.
  3.  I am thankful for my husband. He is the best man I could ever ask for. Please keep him in your thoughts and prayers because he is really having a hard time with this.
  4.  I am grateful especially for my children, my mom, my brothers, my aunt Jan, and my best friend Cindy. They have been checking in on me so much that I can barely get any rest.
  5.  I am thankful for my pets, especially my cat. He follows me around everywhere.
  6.  I am thankful for the deer that grace my yard. Watching nature keeps my mind off my pain.
  7.  I am thankful for finally getting some weather that makes us think of spring.
  8.  I am grateful I tested negative for COVID-19.
  9.  I’m grateful I’m not missing much because I’ve been stuck inside sick.
  10.  I’m grateful that my procedure is very early tomorrow morning. I don’t have to wait much longer to hopefully get some relief.

I need to take some more Tylenol and eat some chicken broth. Prep starts in less than 2 hours. I will try to update you in the next couple days. Thanks for your thoughts and prayers.

purpose

What is the purpose of struggling?

I’ve felt sick like this many times before. There were times in my childhood where I was in so much pain that I didn’t eat much for several days. I was deemed a picky eater. My parents yelled at me, at times forced me to eat until I threw up, and threatened to take me to the doctor. I really wish they did. Maybe I wouldn’t be in the predicament that I’m in now.

Maybe if I was an only child things would be different. My brother had special needs so mine were ignored. It was selfish of me to take care of myself. I mean, look at my brother.

I can’t blame my parents for everything. I once told a doctor about the things I was experiencing and she told me it was all in my head. Maybe it was all in my head. Maybe it still is. I have that fear. Maybe I will go in for the colonoscopy and they will find nothing wrong with me. But if it is in my head, you better lock me up because I can’t live this way much longer.

At its greatest intensity, the stomach cramps feel like I am in labor. That being said, I didn’t really get a lot of sleep last night. I was in too much pain.

What does this mean for my life going forward? I’m thinking about giving up running. I am not well. My running really took a downhill (or uphill) turn last year. But I did finish a 50k. I achieved everything I wanted to. Oh my gosh, will my life come down to walking and yoga? Shoot me now!

I have to think this physical struggle with my health has some purpose. I have to think my childhood trauma had some purpose too. Why is purpose so meaningful to me? Without it, what is the point?

My husband has been very supportive. I want to thank him for giving me the best years of my life. I know we annoy each other and fight sometimes, but I can always count on him. I guess that is as close as I can get to trusting someone in this life.

I have been struggling because I want to write about what happened last summer with my husband. But I don’t want to hurt him because he is a good person. He did give me the green light, but I would choose him over being transparent with you any day if I felt it’s what I needed to do.

The whole purpose of having a personal blog is sharing my story. The ups and downs and the bumps along the way. Maybe I can help someone else in this journey. Or maybe it just makes me feel better.

My story is the only thing that cannot be taken away from me. Unless I end up with dementia, of course, which I am convinced will be my demise. But until then I am going to keep writing.

 

 

 

inflamed

I’m sick again. This time it is worse and it hasn’t gone away.

It started Wednesday morning. I woke up having to run to the bathroom. I felt nauseous too but didn’t throw up. I was tired and had to lie down to rest in the morning. By the afternoon, I had a horrible stomachache and muscle cramps. Sorry Jillian Michaels but I was cursing your name. The day before I did a new workout video, or should I say tried to. It was so difficult I could barely do it. My whole body ached. I would’ve run outside but we are back to winter in Wisconsin, so yeah.

I also blamed it on the night before. I ate chili and a fake grilled cheese sandwich for supper. I tried to keep my portions small because I am allergic to tomatoes, eggs, and baker’s yeast (bread). Plus a lot of chili beans are a no-no for my SIBO diet. My diet is so limited it is hard to eat with my family. Or maybe it was food poisoning or stomach flu, although I was the only one sick.

By the afternoon, I rated my stomach and body ache pain at a 7. I decided to take my temperature and discovered I had a fever. Everyone was freaking out because of the coronavirus and told me I needed to call the doctor. I decided to wait until the next morning because it was after office hours and maybe I would feel better the next day. Even during the night I was up every hour or two to run to the bathroom. I’m not going to lie, this has been miserable.

I called the doctor’s office and after being screened by the nurse scheduled an appointment with another doctor for later that morning. I struggled to take a shower and get dressed. I wanted to let you know how I felt at my worst but I couldn’t even sit up to do my puzzle because I was in so much pain. I couldn’t think either.

Paul has been wonderful and took me to my appointment but I would not allow him to go in with me. He is over 50 with high blood pressure and I did not want him to risk his health for mine. Outside of the clinic there was a tent set up for COVID testing. There was someone standing outside the door to the clinic in full protective gear with a clipboard who allowed me in when I told her my name. It was like I was famous getting VIP access to a club.

I entered an empty clinic, checked in, and was called back right away. Everyone at the clinic wore scrubs and a mask with a full face visor over it. It was hard at times to understand what they were saying. There were signs on the door that said dirty room or clean room. The room I went in had nothing on the door. I heard people coughing. On the way out I saw several sick and scared looking people.

I had a whole array of tests done. I was even tested for COVID although the doctor did not think I had it. They took a large cotton swab which they swirled back inside of each nostril. It wasn’t as bad as I thought it would be, but I just got my blood drawn and was more anxious about that.

It’s day three now and I’m still sick. I do feel better than I did on day 1 or day 2. Thankfully my COVID test came back negative. But several tests came back showing inflammation. The doctor now thinks I might have colitis or Crohn’s. I have all of the symptoms. So Tuesday I go in for my first colonoscopy.

I know it sounds crazy, but I probably wouldn’t have called the doctor if it wasn’t for the coronavirus. I was worried about getting other people sick. I probably would have dismissed it as the stomach flu or food poisoning like I’ve done before although no one else in my house ever gets sick. I struggled with lifelong stomach/GI issues that I brushed off as normal for me.

It seems worse this time. Maybe the SIBO and parasitic inflammation that the antibiotics killed was masking other problems. I don’t know. But hopefully next week I will get some answers. It’s hard not feeling well and not knowing what is wrong.

 

 

Sick as a dog

Right before everything shut down I foresaw the last window of opportunity to get things done. Paul and I had one last lunch date at the Chinese restaurant before it closed its doors maybe for good. I returned some Amazon items at the mall. I knew that once the school closed the mall would shortly follow. I got fingerprinted for my census job as soon as I could then found out later that I did it on the last day they kept fingerprinting open. It took 3 weeks later to get my background check back. Because of this I would be surprised if I start my census job much before summer ends.

One of the first things I did after everything was shut down was to buy some heartworm pills for my dog. Would it be bad to say that I took a risk for my dog? I have geriatric pets. My dog is almost 13 and my cat somewhere around 14. I try not to keep a large supply of expensive pet products because, well…

So I wandered out that day to buy heartworm pills. I saw a dog with heartworm once. It looked pretty miserable and I didn’t want the same fate for my dog. I even saw a dog with rabies once but that was so long ago.

The dog with rabies was sitting by the burning barrel. Did you have a burning barrel as a kid living out in the country? This really brings back childhood memories. We would take our garbage out to the burning barrel. This was years before recycling was even a thing. This was in the days I had trouble lighting a match. I was always afraid to light the fire.

When the burning barrel was lit we would put a grate over it so fiery pieces wouldn’t fly out and create other fires. As kids, this allowed us ample opportunity to play with fire. My mom gave us her old pots and pans. I created rock soup with dirt. It didn’t taste as good as I was expecting. Neither did grass. Sometimes we would take rotten vegetables from the garden like zucchini and cook them on the fire in a frying pan. I guess I was a child once but I don’t think children would be given the task of starting a burning barrel fire today.

That is where we found the dog with rabies. My mom drove in the driveway with all of us kids in the car. We saw the dog crouched next to the burning barrel snarling and foaming at the mouth. We were scared. I remember the fear. It was hot sitting in the car waiting for my mom to decide what to do. Something was wrong with the dog. It wasn’t our dog. We never saw it before. My mom thought we could make a run for the house to call for help.

By the time the man arrived with a gun, the dog moved a little further from the house. Mom told us to stay inside and I was big enough to peek out the bathroom window. I saw what happened to that dog.

I have seen a dog with fleas, heartworm, and even rabies in my lifetime. Yet I don’t know anyone who tested positive for coronavirus. It’s interesting to see how our experiences shape us. I had to make sure that didn’t happen to my dog, but at the same time I wasn’t too worried that something would happen to me.

Maybe tomorrow…

Yesterday I said maybe…Maybe school will start back up again. Maybe you can plan your birthday party next month. Maybe your best friend whose mom has cancer will be able to go.

Yesterday I said maybe, then yesterday maybe was gone. The governor cancelled school for the rest of the school year. The girls still have online schooling. But now everything deemed as fun is officially over. Tomorrow they were supposed to be going to prom.

It’s been a rough week here. Winter made a come back. There is a smattering of snow on the ground. It’s been cool and windy. I haven’t even been outside running this week. Everyone has cabin fever on steroids. It is a problem around here this time of year when we aren’t locked down.

It brings back memories of long ago. When I was in 8th through 10th grade I was homeschooled. My mom pulled us all out of school when my autistic brother Matt could no longer go to school because of his violent behavior. As a teen I lived in isolation for three years rarely leaving the house and rarely having anyone over. It seemed different then, maybe because I was a child.

I spent three years in isolation as a teen. It’s been a month now and I probably leave the house as often as I left the house back then. Maybe I have to examine that as part of my trauma experience. I’ll add it to the list.

I told myself I liked the isolation and really I think I do. I told myself that is what I wanted. When you can’t have what you need sometimes the best coping mechanism is to tell yourself what you have is what you want. You get used to it. It becomes normal.

Now everyone else is just as crazy as I am. The sanity playing field has leveled out. Maybe now you feel the anxiety that I always felt. Maybe the anxious introverts are now pulling ahead of the coping game. If you also struggle with depression, give yourself another point. Now the social anxiety people even don’t have to feel bad for not wanting to leave their house.

It feels strange to leave the house now. It feels strange to drive my car. I went to the store today to get groceries for my elderly parents. It feels strange, to call them elderly. It is hard to get groceries from someone else’s list. I’m not sure why.

I wore my mask that my crafty daughter sent me in the mail. I don’t mind wearing a mask though, although I couldn’t wear my glasses which made it harder to read the list. I don’t feel like I have to smile because no one can see my mouth.

Most of the people at the store wore masks. I don’t see little children anymore. That’s different. I hear more people fighting. That’s different too. It’s exhausting, but I don’t do anything to be exhausted for. When I get to my parents house, my mom opens the trunk to her car and I put the groceries inside. I wave at my mom and my brother Matt through the window. My mom looked different today like a wilted flower.

I wonder when all of this will end.

Maybe tomorrow…but yesterday I said maybe tomorrow too.