Still waiting for answers

/ Outrunning my demons / 5 Comments

I turned 45 this past weekend. Apparently I am now at the age where I can start to have long conversations with people about my declining health.

I had big plans for my birthday. I mean you only turn 45 once, as if I didn’t turn 29 or 44 once. Okay, I guess I did turn 29 a couple times.

Anyway, on Saturday the sailing club was having a pub crawl cruise. What a perfect way to celebrate my birthday. After all, I love craft beer, sailing, music festivals, great weather, and fun people. We were going to sail into town, go to a few breweries, and listen to live music. Perfect for a birthday weekend. Right?

But there was one problem, my stomach. I had a huge late lunch at our first pub stop along with everyone else and ordered a beer flight. I have to follow a perfect algorithm if I don’t want to be in pain. My stomach can’t be totally empty, but I can’t eat too much either especially paired with drinking. I couldn’t take my time because everyone wanted to head off to the next spot. Taking Tums for me is like putting a tiny bandage on a gushing spurting head wound.

I ended up in a great deal of stomach pain again like I have been off and on since I stopped taking Prilosec. I ordered nothing at the next pub and kept quietly to myself since I was in a lot of pain. Everyone asked me if I was feeling okay. I had to go through the whole health explanation that I went in to be scoped and was waiting for the results of my Celiac test. It was awful. I was hoping not to have to mention the health issues I was having and just have a fun time.

Then we walked a block to the music festival. I was asked if I would be able to walk the whole block to the festival. I am a marathon runner. I felt very sick and thought if I couldn’t find a place to sit I would lie down on the ground. People kept asking me over and over if I was okay. It was humiliating, I just wanted to be left alone. There were people everywhere. I decided to go back to the boat and lie down.

At one point even a homeless man came up to me and asked if I was alright. I know people were genuinely concerned, but it was really wrecking my tough girl persona. I don’t know what hurt worse, my stomach or my pride.

So this is how it has been. I have not been feeling well and have been waiting for answers to figure out how I can feel better again.

I had friends over on Sunday. I felt a little better because I was at home and could eat and drink at my leisure. We went swimming but spent most of the day sitting around talking and laughing.

Paul tried really hard to make the weekend special for me. He cooked my favorite foods and entertained with his music. I realized that I don’t share my music with other people. A majority of the songs I like, although good, are incredibly depressing or angry. Kind of like me I guess.

I’m still waiting for answers. The doctor’s office said that I would most likely get a call on Friday, Monday at the latest. Here it is Tuesday evening. Don’t they understand how frustrating it can be for patients to tell them they would have answers sooner than provided especially if they are not feeling well?

Waiting…

answers???

/ Outrunning my demons / Leave a comment

Tomorrow is the big day, I am getting scoped.

It’s been an eventful last couple of days to say the least. In the last couple of days I wrote about 4 drafts that I threw away. They seemed so negative and angry. Am I really that way?

It was a long holiday weekend. What should have been relaxing left me quite drained. I went up north for the holiday weekend. For the 4th of July, in Wisconsin, there is no place I’d rather be. Every night there were fireworks on the lake. Then it seemed like every day there were fireworks with my family. My dad picked fights with my mom. My brother Mark and his wife Carla were bickering. My mom got in an argument with Carla which was unlike her.

It was hot outside. The people of WI are not used to the heat. My dad sat around the cabin in only his underwear for some of the weekend which was disturbing to say the least. There were fights about whether the windows should be opened or closed.

I hope I’m wrong, but I feel fairly certain that I might have Celiac. I tried to spend some time relaxing drinking some of my favorite craft beers, hopefully not for the last time. Every time I cracked open a beer, my niece Gracie would lay into me. How many beers have you had? Wow, you really like beer. Are you a drunk? Her nagging got very annoying after awhile. I told her that she would make a very good wife someday in jest because of all her nagging. Then Gracie bragged to her sister Eva that I said she would make a great wife. Then Eva got upset that I didn’t say it to her. I just couldn’t win.

To make matters worse, my husband and I were having the argument of a decade. I was so angry and hurt that I wanted to take my wedding ring off and chuck it into the weeds. Incidentally, the fight started about a half an hour before I was supposed to meet the first guy that Arabella wanted to date. I tried not to look too angry.

I was so stressed out that I’m sure what happened next could’ve only have been explained by my relaxing (not) weekend. A few days after I stopped taking Prilosec, I was in GI distress. I spent Friday and Saturday barely eating and feeling so sick that I slept very little because I had to keep getting up to go to the bathroom. I had a lot of stomach pain and only got about 6 hours of sleep the whole weekend. When I did sleep, I had nightmares. It was terrible.

Then I had to drive home. I would not let Arabella drive home because it would take an experienced driver to fight the traffic going south on a Sunday afternoon after a holiday weekend. I had to wait 10 minutes to turn right to go south onto a 2 lane highway. I was only let in because someone stopped on the highway to let us in. There were times traffic came to a dead stop.

All in all, except for the beautiful fireworks at night, it was a miserable weekend. I am feeling a lot better now. Paul and I are getting along again. But for awhile, I was very angry with God. I am worried about my health. Even my brother Luke is having health issues and might need a biopsy. Not to mention all the crap going on with family over the weekend.

Tomorrow I might not get the answers I want, but at least I should have some answers. I guess that is a start.

Extreme empty nest solutions

/ Outrunning my demons / Leave a comment

On Sunday I received a phone call from the foreign exchange student coordinator a couple hours after my daughter moved out.

Sunday was a bittersweet day.

On Sunday, my best friend became a grandma for the first time.

On Sunday, it’s been a year and a day since my close friend lost her daughter in a fiery car crash.

On Sunday, my daughter moved 4 hours away and is not planning on living at home again.

I was feeling down as you can probably imagine.

My oldest daughter moved out, my son is off pet sitting this week, and my youngest daughter is volunteering this week as a camp cook. I’m feeling the empty nest kick in. I realized that I may have a harder time with this whole empty nest thing than I thought.

I’ve been a caregiver since I can remember. I was my autistic brother’s “second mom”. I also helped with my other two younger brothers.

In college, I was a caregiver for an elderly woman with Alzheimer’s and a middle aged man with Paranoid Schizophrenia. I took care of my brother Matt up until after I had several kids of my own. I also took care of my Aunt Grace when she had dementia. I provided day care for several children when my kids were little.

I don’t know what it is like to not take care of someone and the thought is a little scary.

As I was crying and feeling sorry for myself, the phone rang. The foreign exchange program coordinator called and said she had an emergency situation. One of the host parents for a student from Germany ended up getting into a serious motorcycle accident and broke her back. This student was really into music and needed a home.

I was wondering what to do with my daughter’s empty room. So we filled it. Now we will be hosting two foreign exchange students starting next month, Estelle from France and Clara from Germany.

I feel like my life has meaning again. I suppose most people get another pet once they start emptying the nest. Not me, I guess you could say I am rather extreme.

Even though it might be stressful having 3 teenagers in the house again, I am going to enjoy this last year of chaos before I have an empty nest.

By the time next year rolls around, I might actually be okay with only taking care of me.

 

More than a shot

/ Outrunning my demons / Leave a comment

I took a pregnancy test today.

I had to take the test before I got the MMR vaccination which contains a live virus. Back in the 1990’s, when I was pregnant, my titer showed I was not immune despite receiving the shots in the 70’s.

I decided to get a booster shot because of the recent outbreak and my love for international travel. I might want to go on a mission trip in the next couple of years which will also take me off the beaten tourist trap path.

I started to think a bit more about vaccinations, more specifically the MMR vaccination. With the measles outbreak, I saw a lot of hateful comments made towards the anti-vaccination folks. I saw babies that wore shirts in photos saying, “I’m vaccinated because my parents aren’t morons”. I found this to be offensive because I’m sure most parents that don’t vaccinate are not morons.

Perhaps my opinion is not popular, but stick with me for a moment.

I had my first baby in 1998. In 1998, an article was published in a medical journal linking the MMR shot to autism. It caused a huge scare that I believe hasn’t been fully eradicated to this day. At that time, I was more fearful that my children would be severely autistic like my brother than to get measles, a disease that I’ve never seen anyone contract in my lifetime.

Later, after the article was published, we were told that the link was a sham. Being a very logical person, I wondered what kind of medical journal would publish crap research findings. Can anybody publish any research article that they want in a supposedly reputable medical journal?

I also thought about conspiracy theories. Here you have huge pharmaceutical companies making big money off of vaccinations pitted against a small probably under funded research doctor. Of course there wouldn’t be a link. Follow the money. What were concerned parents supposed to believe? You can’t just erase something you already saw. Shame on the journal for publishing the article in the first place if there were so many issues with the study’s validity. It caused so much unnecessary fear.

It was horrifying and I struggled with making the decision to have my children get the required vaccinations. I am happy to say that my children are fully vaccinated. I thought the best way around it was to vaccinate my children with the MMR shot after they safely passed the age when most cases of autism are diagnosed.

I feel angry with people who quickly judge others for not vaccinating. They are usually not morons, they might just be fearful like I was. My babies were born at the height of the autism linked to vaccinations scare.

I think that most people who choose not to vaccinate have their reasons not to. It is not lazy parenting. Believe me, it is a lot more work to choose not to vaccinate. I did receive some criticism for doing things on my timetable. But even if there was a small iota of a chance that vaccinations caused autism, I needed to be careful. Where those people that shamed me going to come in my house and take care of my child if he/she became autistic?

I honestly don’t know if I would have the strength to live through it again this time as a parent.

I have a lot of respect for people that grew up with a special needs sibling that end up becoming a special needs parent. I don’t think I have the courage to fight that battle twice.

I get angry about talk of forced vaccinations. Shouldn’t parents have the right to make that choice for their child?

I think pro-vaccine people would be more successful listening and being empathetic to the concerns of parents who don’t want to vaccinate. Don’t treat them like they are a bunch of morons because that won’t get you anywhere. Morons blindly follow. But educated people question and try to make the best decisions they can.

I am pro-vaccination, but I strongly believe that the parents should make the decision and be treated respectfully whatever they decide.

 

 

forgotten

/ Outrunning my demons / 5 Comments

One of the hardest parts about being a special needs sibling is being forgotten. It’s like I don’t even exist. Forgotten, no one would miss me if I was gone. It’s hard to get over the voice in my head that is on repeat saying that no one really cares about me.

Yesterday I went out to eat with my mom. At the restaurant, my mom noticed our previous dentist sitting near us. He lost his license to practice dentistry over a decade ago. He wasn’t the first provider that we had lose his license either. Let’s just say when traditional medicine didn’t heal my autistic brother, my mom went the alternative medicine route and some of those doctors were quacks.

My mom went over to talk to our dentist about Matt. She showed him all of Matt’s most recent pictures. On the way out, we said good-bye. I told my mother that the dentist probably remembered me. After all, I was the patient with the small mouth that no dentist could numb for fillings. My mom talked to the dentist some more about Matt, then asked the dentist if he remembered me.

The dentist said that he did not remember me. He had a very large practice and wasn’t expected to remember every patient. I was in his office so often that I still remember his secretary’s name. It was like a kick to the teeth. The polite thing to do would’ve been to lie. Yes, I remember you. How are you doing now? Instead he asked for my mom’s phone number because he would like to schedule a time to come out and visit Matt.

I told my husband about the interaction and he was rather appalled. But I told Paul this was the typical response.

As a teenager, the rare time I was with family friends or family, they would pepper me with questions about Matt. They asked how my brother Matt was doing with the same sympathetic frown on their faces. I was barely holding it together, but no one ever asked how I was doing or how my other brothers were doing. Yeah, just trying not to swallow a whole bottle full of pills here. But who cares?

As a child, I wanted something to be wrong with me so that I would be loved too. My babysitter told me if I wore her thick glasses and looked in the mirror, I would need glasses too. I wore her glasses looking in the mirror with a metallic gum wrapper covering my top teeth with a paper clip. I wanted to be special too.

I had a lot of stomachaches as a child. I could barely eat I felt so sick. But I wasn’t as sick as Matt. I didn’t need to go to the doctor. Matt’s valve between his stomach and intestines closed, and he almost died. What was I bellyaching about? I just wanted attention.

But as I am currently facing health issues, I wonder if I am just being paranoid. Maybe it’s just me wanting attention. Maybe it’s nothing and I am just crazy. I am probably just being selfish to focus so much on myself. Look at Matt.

It was always that way. It will probably always be that way. Seriously, who cares anyway? My thoughts and feeling don’t matter. I don’t know why I even bother.

I remember a special occasion with family several years back. We were supposed to go around the room and share something special that happened in our family over the past year. My mom spent 20 minutes in tears talking about all of Matt’s medical needs. She did not once mention that my brother Luke, who wasn’t there, got a HUGE promotion at work that year.

We are the forgotten ones. It makes me feel both sad and angry, hurt. But it was always like that. I should be used to it by now.

I didn’t feel that way about my dad. He pretty much checked out altogether. But in my mom’s life, the sun will around revolve around her special son Matt. Our accomplishments don’t matter. It doesn’t matter that Matt hurt us or our children. We should all work together to worship our god Matt because his life sucks.

My mother is a great person, a martyr perhaps. I feel guilty for my disloyalty. But the one thing that grieves me deeply, far beyond the memories of the physical pain of being attacked by Matt, is being forgotten. It’s hard to get over feeling like no one cares about me. Sometimes it’s hard to be caring towards myself. I feel selfish for sharing my wants and needs.

Forgotten.

 

Not feeling well

/ Outrunning my demons / 4 Comments

To be honest with myself, I haven’t been feeling well for quite some time.

I noticed it several months ago when I transitioned from running on the treadmill inside to running outside again. I seemed more tired than usual. I didn’t have my regular stamina. Was it normal for my endurance to drop so drastically? I could run 6 miles without stopping relatively easily. Then I started needing walking breaks.

I chalked it up to aging. After all, I will be 45 in a few weeks.

Maybe I just wasn’t used to all the hills? Peri-menopause perhaps? Seasonal allergies? The cool rainy weather? Maybe it is normal to be sluggish at this age.

I doubt I could run a 50k with the shape I’m in today. I have two months to go until the race. How am I going to run further than I’ve ever run if I can’t even run 6 miles without stopping?

This week I had a physical with my new doctor. It didn’t go well. I complained about the fatigue. But what middle aged person is not tired? A couple nights a week I have insomnia, but it wasn’t anything new to me.

The doctor ran some extra tests. The results show that I am slightly anemic which does explain some of the symptoms I’ve been having.

But what really concerned the doctor was that I have been taking two Prilosec a day for GERD for several years without ever being scoped. She said that wasn’t normal for someone of my age and health. She asked several more questions, then said she would like me to get scoped and tested for Celiac which is an autoimmune disease. The only treatment of Celiac is a strict gluten free diet. I think 2 of my brothers already have undiagnosed Celiac.

I looked up Celiac when I got home. I have almost all of the symptoms and have had several of them since I was a child. I hope the doctor’s suspicion is wrong, but I think I see the writing on the wall. Even anemia is a symptom because Celiac prevents your body from absorbing nutrients. Otherwise it makes no sense since I am already taking a multi-vitamin with iron.

Today I bought donuts. I bought chicken patties to eat on big hamburger buns. I bought my favorite food, macaroni and cheese. I bought my very favorite craft beers. I am going to go to Arby’s to eat a big roast beef sandwich with mozzarella sticks on the side. I am starting to think of state fair cream puffs. I want to eat my favorite foods before I can never have them again. I almost started crying in the craft beer section.

I am feeling very down about this. I was told this was the best time in history to be gluten free. But that doesn’t make me feel any better at the thought of giving up my favorite foods and drinks forever.

I think it would be hard to even go grocery shopping. I don’t think I would want to go out to eat with friends and family. Forget parties. Maybe I won’t leave the house.

I need to stop taking Prilosec as well. I am down to one pill a day. I bought a big bottle of Tums and liquid antacid for the pain I will be in. It’s already started. This morning I felt nauseous. The acid burn in my throat is back, so is the burping.

But it will be good to have answers.

I have been feeling so tired, weak, and depressed lately. I have been having a hard time thinking. I am very organized and meticulously detail oriented. In the last couple weeks, I’ve forgotten things that were on my grocery shopping list. Today I went running and got lost on a trail I have been running for years. I can’t seem to keep a thought in my mind for long. I forget what I am going to say sometimes mid-sentence. That’s scary!

I am afraid.

I will have more answers soon and hopefully I’ll start feeling better. It just might not be the answer I want.

 

My life with a teen driver

/ Outrunning my demons / 6 Comments

I wonder if Arabella will ever get her license. She is 16 now, but I am hesitant to set up her driving test appointment because I don’t think she will pass.

My life is in danger. Just yesterday, she blew through a stop sign. She almost ran a red light. I had to yell at her to stop. Generally a relatively patient person, I screamed an obscenity as I watched my life pass before me as she changed lanes into another car’s path on a roundabout. The other driver pulled over as if my daughter was driving an emergency vehicle with sirens blaring. I simply screamed as I saw myself going towards the other driver as if in a nightmarish bumper car ride.

But that wasn’t all! Yesterday she cut off a driver on the highway almost causing an accident. The elderly man drove past her wagging his finger at her violently. He must’ve been a nice man. Most drivers lay down on the horn screaming what I can only imagine are obscenities while shaking their middle finger at her.

Maybe if she goes one week without someone flipping her off, then I will schedule her appointment. Even if she passes her test, I will worry about her driving. It doesn’t help that a close friend’s daughter died in a car accident last year when she was 16. Having a new driver is one of the most horrifying steps of independence for a parent.

To make matters worse, Arabella has zero sense of direction. I have to give her directions to places that she has been to a million times.

She also knows everything about driving and doesn’t want to listen to my 30 years of experience. Even though I never got any tickets or was ever in an accident. I didn’t even hit a deer which is unheard of around here. I did run into a septic tank cap up north a couple weeks back that I didn’t see which caused some front end damage to my car. But we won’t talk about that today.

I wish I could help Arabella be a better driver. It’s really no wonder I feel anxious. Maybe things will get better…

Cracking open the box

/ Outrunning my demons / 2 Comments

Today I cracked open Pandora’s box. I am afraid to peer into what lies inside.

I spent most of the weekend feeling blah. It rained all weekend with high temps in the lower 60’s. Some of our outdoor plans got cancelled. It has been very frustrating. So far summer break has been cool and rainy. Surprisingly, the best days of the year so far fell on Alex’s graduation day and again for his grad party.

The weather has been making me feel restless and bored. There is nothing I hate more than boredom. I’d rather be way too busy. Not to mention that all my favorite running trails are underwater. Although, thankfully, my ankle is starting to feel better.

Yesterday, on Father’s Day, something exciting happened though. I got a message on Ancestry from a relative on Paul’s dads side. On Father’s Day of all days too. You see, Paul never knew who his dad was. From what I can tell, this man is Paul’s cousin.

I told myself that I wouldn’t go seeking out answers. I was far more curious than Paul. But if someone came to me asking, that was an altogether different story indeed.

Today I reached back to Paul’s cousin and told him what details I knew about Paul’s dad. We’ll see what happens. Paul said he was okay if I did that.

It’s hard, Paul built his whole identity around not having a father. But what if he has a whole new family out there that wants to get to know him?

Why do I feel like I cracked open Pandora’s box? Do I really want to know what’s inside?

I can tell you one thing, life got a little more interesting.

Hurt again

/ Outrunning my demons / 8 Comments

I felt a burning fire rage within me today. I think it was the combination of a lot of different things that ignited the fiery red flame.

Yesterday I wrote in my book about one of my most painful early adult experiences. Previously in my writings, there seemed to be a separation between what I was saying and how I felt. There has been an insulation protecting me from the words. Yesterday it was removed and I felt angry.

My mom always told Matt that it wasn’t his fault he was violent. Sometimes she told him he was having a seizure after being exposed to loud music. Most of the time Matt was told that he was having an allergic reaction. It was an accident and not on purpose. The school told my mom that they wanted Matt to be told it was wrong when he hurt someone and to have consequences for his negative behavior.

That never happened. Six months later Matt got arrested at school for assaulting his teacher’s aide. She was pregnant at the time and it took 2 adults to get him off of her. Matt’s aide was my childhood best friend Shelly. I was the maid of honor in her wedding. We were best friends forever, or so I thought at the time.

When I got married, Shelly wasn’t invited to the wedding. I had to choose between my family and my best friend. My mom had the attitude of oh well you were growing apart anyway. But if we grew apart and the friendship ended it would’ve been my choice, but it wasn’t. It tore our whole friend group apart.

It was very painful to lose a best friend, all my close friends really because my brother attacked her.

I was rage cleaning this morning as a result.

I had to take a step back from running. My Boston marathon friend contacted me to go running again. We ran 8 miles together at breakneck speed. Then she told me that I really needed to work on hill training. I pushed it really, really hard and ended up hurting my ankle. Now just walking gives me pain.

Something else happened too. Someone I know told me the story of how her son recently fell asleep while driving and caused a fatal accident. After hearing her story, I started feeling anxiety driving again. It started by not sleeping well one night, then driving Arabella and her friends somewhere for her birthday. I started to worry that I would fall asleep and kill someone too. For the last couple of weeks, my driving anxiety has been back and I am worried that it is going to turn into full blown anxiety again. I worked so hard to get over it.

I have just been feeling angry and frustrated by the things I have experienced and the things I am experiencing. My son had some friends overnight and I waited until 1 PM to vacuum near them. I didn’t say one word to them but they seemed so terrified of my anger that they went from a dead sleep to packing up all of their stuff and leaving.

My son saw me rage cleaning and asked if he did something to make me so angry. I told him that it had nothing to do with him really. He pressed me for more details and I ended up telling him about my childhood for the first time. He is almost 19 and will know all about it when I publish my book anyway. We had a really nice conversation for almost 2 hours. In that time my anger dissipated.

I’m not sure what is going to happen, but I plan to keep writing no matter how hard it is or gets. Sometimes it is very hard to stir up my demons because I don’t know how I’m going to react. This has been my biggest obstacle so far, but I refuse to give up. After all, that is how I hurt my ankle. Sometimes I need to learn when it is time to ease up. That’s never been my strong suit.

It sounds kind of funny. Most people complain that they don’t have my determination, but all I want is the ability to relax and not be so hard on myself. So here I am, hurt again.

Allergy sufferers

/ Outrunning my demons / 5 Comments

This morning my blog friend LA wrote a post that really hit the nail on the head for me about allergies. LA was on a train and sat next to a woman who said she was allergic to LA’s perfume. LA got up and moved seats. But should LA have catered to the allergic woman or should the allergic woman offered to move? Whose shoulders does that responsibility fall on?

All my life I had to cater to my autistic brother’s allergies. He would become violent if he was exposed to allergens. That is what I was always told and that is what I always thought. But as I have been writing my book, in retrospect I have been able to see the situation with my blinders off.

It’s not that I don’t believe that Matt has allergies. I find it hard to believe that allergies could cause someone to act violently towards another person. He doesn’t sneeze, cough, or break out in a rash. It is possible that an allergen could cause a physical symptom that causes him to be irritable and lash out. But I no longer believe that smelling someone’s perfume could cause him to be violent.

Matt acted violently because he was severely mentally ill. He needed to be told that his actions were wrong whether he was capable of controlling them or not.

Meanwhile, we did crazy things to cater to Matt’s allergies. I wasn’t allowed to wear perfume. My parents got rid of their wood stove. Newspapers weren’t allowed in the house. No one was allowed to park in the garage for awhile because of auto exhaust fumes. My parents replaced their new curtains (new smells) with old blankets. We had to evacuate if the neighbors were spraying their fields. There were many other things as well that were very inconvenient and extreme.

But, guess what? With all of our catering, Matt was still violent.

I don’t cater to everyone anymore. It was hard at first since it was so ingrained in me to do so. Now if I host a party or holiday and I am expected to do all of the preparation, I make what I want and tell people if that doesn’t work for them to bring what they can eat for themselves. Believe me I’ve tried and I just about went crazy. This person is gluten free, the other is dairy free, another black pepper free, pork free, organic only. I wish I was kidding.

I’ve learned that the best way around it is to tell everyone what I am making and if that doesn’t work for them they can bring their own food (or host the party themselves!). I’ve made peace with the fact that I can’t please or accommodate everyone.

I do feel bad for people who are miserable from allergies. But it is also inconsiderate to  expect others to cater to you if your allergy is not life threatening.