Acceptance, Attitude Adjustments, Be Happy, Being Strong, Coping, Courage, Invisible Illness, Just Breathe, Laughter, Love, Passion for Living, Thankfulness, That's life, Uncategorized, Unexpected Life Events

Just Keep Going…

It’s been 130  days since my AN diagnosis.  Since then, I’ve been through loads of doctor appointments (I’ve lost count), a variety of tests, another diagnosis of an infection in my mastoid bones (behind my ears), which seems to be resistant (I’ve been on 4 different antibiotics so far), and a seizure.  I’m now on anti-seizure meds, and a few things to try to control my headaches.  This seems to be the new “normal” for me, and we just keep hoping for the best with each appointment.

I try not to miss any work.  I’ve actually only missed 3 days out of 70 so far this year, and have taken an early leave here and there for doctor appointments.  I also go in early almost every day……a habit I’ve had for a very long time.  I know if I sit at home, I would get depressed…..something that is easy to do with any illness.  I don’t want to add depression to the list of conditions and symptoms.  Besides, I love my students, and appreciate that this is probably the best class I’ve ever taught!  I guess I need them right now.  They let me know how much they love me, and how much they care about me.  They tell me constantly that they love me, they hug me, they make pictures for me, are pretty well behaved, and they understand that sometimes I can’t get up too fast!  I told them about my recent EEG, and they enjoyed imagining their silly teacher with the 25 electrodes coming off of her head.

I don’t let a lot of people see me when I’m feeling bad.  I have learned to manage that very well.  The teacher who teaches next door to me, Tamesa, has become such a great friend.  We vent, laugh, cry, and support each other every day!  She is one of the few who sees me holding my hurting head, or can tell by the look on my face that I’m in pain, and knows what is going on, without me having to say anything.  It’s nice to have a friend/co-worker like that, but she also understands my fierce independence, and knows when I just need to push through.

I have had people ask me how I do it.  How do I keep going?  The commute? Teaching 1st graders? The work load? One of my husband’s friends in New York said in his thick NY accent, “She’s a troopah!” Well, what choice do I have?  Like I said before, I don’t want to sit home and get depressed, having no interaction with anyone.  While I might need more rest now, I still believe that I can manage this more effectively by continuing to keep busy, and keep a normal schedule. And…..I don’t want to give up my way of life.  I don’t want to get old before my time.  Young at heart = hopefulness and positivity.

I have seen people with chronic illnesses give up, go on disability, stay home, and become old before their time.  If you know anything about me, you know I have a sense of adventure and fun, and a curiosity to learn about people and places.  I love travel.  I love museums.  I’m not old enough to give up that part of myself.  I might stumble a bit here and there.  I might not hear everything, especially in a noisy room.  I might be hypersensitive to loud noises.  I might have headaches.  I might feel pressure in my ear and head.  I might have vertigo that makes life feel extra wobbly.  I might have to be more aware of the signs (auras) of an impending seizure.  I might have to eventually have surgery. But my life will not stop being enjoyable because I have a chronic illness! I refuse to give in to this.  I guess this is where my stubbornness pays off!

Over the last 130 days, I have learned so much.  I’ve learned that I am much stronger and more determined than I ever realized.  I’ve learned that I keep my balance better if I give myself more time and turn on lights!  I’ve learned that my husband is a jewel (I actually already knew this, but he has just confirmed it, as he helps me up every morning so I don’t fall, reminds me to be careful, and is understanding and supportive with my fatigue and limitations).  I’ve learned who really cares about me, and who is there to support me on this journey, wherever it leads me.  Fortunately, there are a lot of people supporting me that I never knew cared so much!  I’ve learned that naps are not only enjoyable, but they really do help!  I’ve learned a lot about two illnesses that I have, that I never dreamed would affect me.  I’ve learned to really appreciate small acts of kindness, quiet moments, fresh air, a good laugh, a walk, and all of the positive things in life.  I want to be the best me I can be for my children, who I know have been worried and scared through this.  I want them to enjoy their silly mama, who loves to laugh and embarrass them in public.  I want to be the best me for my husband, who shows me his strength every day, but I know he worries and gets scared from all of this too.

So the last 130 days of knowing what is wrong with me has been an emotional and physical roller coaster, but I appreciate what it has given me.  Things can always be worse!  I can do this…..with a few adjustments and a lot of support from those who love me.  I’m not ready to give up anything yet…..and I won’t.

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Attitude Adjustments, Be Happy, Be Kind, Being Strong, Coping, Fear, Happiness, Invisible Illness, Just Breathe, Passion for Living, Support, Uncategorized

Coping Through Fear and Uncertainty

The last couple of months I have been dealing with an issue that I have been afraid to write about.  Actually, up until a couple of weeks ago, every time I talked about it, I would cry, but I am learning to deal with this more comfortably, or as comfortably as possible, so maybe writing about it will be therapeutic…..I have a brain tumor.  THAT is a very difficult thing to say (or write).

After a couple of years of dealing with vertigo off and on (mostly when I was tired, or the lighting was low), headaches, tinnitus, balance issues, and noticing some hearing loss last school year, I finally have answers, following some medical tests.  Our trip to Europe seemed to intensify the symptoms…..I guess from the pressure during the flight?  I tried to pass it off as fatigue or jet lag, but deep down, I knew something wasn’t right.  I felt horrible most of the time we were there.  After we got back, the symptoms didn’t go away.  On July 25th, I was diagnosed with an acoustic neuroma, which is a tumor on the main nerve going to my ear.  My husband was in New York visiting his family at the time of my diagnosis, so I was alone, and very afraid when I found out.  I told him over the phone……  I called my three children, and cried while I told them.  They’ve all been very sweet and understanding, very supportive, and patient with my emotions.  I emailed my four sisters, and they were very supportive. They told me not to worry because they would worry enough for me.  I texted my friends because I didn’t want to cry while telling them.  I texted my pastor.

Basically, this thing has probably been with me for awhile.  It’s not malignant, and it’s very slow growing. For now, it’s small (1.7 cm), and we are lucky to have caught it at this stage.  It’s obviously big enough to be causing some serious problems……….headaches, vertigo, balance, tinnitus, pressure, hearing loss, noise sensitivity, fatigue…….but we have chosen to watch it to see if it is still growing, and if so, at what pace.  If I were younger,  and if the location were different, the approach may be different.  Two of the main concerns are total hearing loss and facial paralysis (it pushes against the facial nerve), and of course, if it is left completely untreated, it can cause death.  It does not grow into the brain, as a malignant tumor would.  As it grows, it pushes against the brain and brain stem.

It’s a rare condition, but I actually have two friends who have had this same thing.  Their tumors were larger, and they were younger, and they each had different treatments. Each one was left with problems resulting from the surgery…..facial paralysis, total hearing loss, epilepsy…..and have a lot of the same symptoms that I have which surgery and/or radiation didn’t eliminate.  My doctors want to wait to see if it is growing before making the decision to go in after it.  If I can learn to manage the symptoms I have, and it isn’t growing, my symptoms may never get worse…..but they won’t get any better.  If I have surgery and/or radiation, there is a risk that these symptoms may get worse.

I have had to do some soul searching throughout this.  I was very depressed at first.  I have had to count my blessings though. There was so much uncertainty before the diagnosis.  Was it MS?  Parkinsons?  Cancer? No, no, and no, and now I have an answer, even if it is scary.  I’ve done a lot of research, talked to my doctor, and also consulted with my friends who have been through this. I’ve decided I have to accept what I have in front of me, make adjustments to my lifestyle, position myself in places where I can hear, try to avoid loud noises (my principal will give me a heads up before those screeching fire alarms go off during drills…..that feels like being stabbed in the ear drum with an ice pick!), get up more slowly, don’t turn too fast, take aspirin for my headaches, be careful while walking or standing, especially in low lighting (the vertigo and balance problems are extreme for me in low lighting), fall asleep with the television or fan on to drown out the tinnitus, get plenty of rest, do more yoga, avoid stress, etc. etc. etc. I definitely don’t have time for anything petty, negative, or dramatic.  I’ve never liked those situations anyway, but now I have a legitimate reason to avoid it and brush it aside!  My health depends on it.

I have decided that if I am to completely come to terms with this, I need to make peace with it.  This is the best way for me to stay positive and be able to face it….as I always do…..with humor. The tumor needed a name.  I thought about Tammy, but since that is one of my sisters, I knew it wouldn’t go over very well (she agreed)! So I have named her Tina, and damn it, Tina and I will be friends, whether she likes it or not!  My children and Al make fun of me for my hearing loss, but that’s okay.  What I think I hear is usually way more entertaining than what they’re saying!  For instance, today at work, they announced that the latchkey program would be meeting in the “portable.”  Well, I heard “toilet bowl.”  What I heard was a lot funnier!!!!

I am so thankful to my children, Lily,  Evan, and Grace, who check on me regularly (even when Evan is in the middle of the ocean on his ship in the Navy, he checks on his mama), keeping my spirits up.  I am thankful to my doctors and modern medicine! I am thankful to my wide circle of friends from California, Kansas, Oklahoma, Iowa, Illinois, Missouri, Ohio, Alabama, Florida Europe, and South America…….it makes me emotional thinking about how much support they’ve given me! I am thankful for my sisters, who keep me laughing with their quirky emails (I’m not the only quirky one), my cousin Danny (who happened to be the first person I told because he just happened to reach out to me after I got my diagnosis).  I’m thankful for my church family who has prayed for me, and has checked on me when we have been able to get there.  I’m thankful for my friends at work who have kept my “little” secret until I have been strong enough to talk about it, and have helped me. I’m thankful for my little dog, Andy, who snuggles with me, giving me comfort and kisses! And most of all, I am thankful for my dear sweet husband, Al.  I know that he is probably more worried and scared than he lets on.  But he is so strong for me.  I’ve lost count how many times I have fallen, and he patiently helps me back up, making sure I’m okay and steady on my feet before letting me go.  Falling like a two year old is very humbling!  Through my headaches, emotions, and all of the financial strain I’ve put on us with this…..he is my ROCK. We may have found each other late in life, but I know that I couldn’t go through this without him.  I don’t have my parents anymore, but I have some very good people in my life!  I am the luckiest girl in the world…….

Life is a party……face it head on, embrace it, and enjoy every minute of it!

Be Kind, Being Strong, Coping, Fear isn't weakness, Invisible Illness, Just Breathe, Loyalty, Support, Uncategorized

It’s Okay To Be Weak

Have you ever known someone who is very good about keeping composed, and holding everything together?  Some people always seem to be the strong presence in difficult situations.  You wonder how they manage at times.  I have been this person most of my adult life.  I don’t let on that I am struggling.  I make a joke to try to lighten their mood (or mine).  When my mother died, I showed very little emotion outside of the funeral. At the time, my ex husband was living in New Mexico, and I was alone with 3 children in Kansas.  Our family dog had died the previous day, and it was also the week of Thanksgiving.  It was a really crappy week!  After the funeral, I had to be the strong one for my kids, and hold it together.  I didn’t want them to be afraid if their mama was upset.  I didn’t feel that I could let my children or my co-workers know how much I was hurting. In fact, the day after my mother died, I went to work, and only told two people what had happened!  I just didn’t want to let on to anyone that I was hurting or afraid, and I taught my class that day without ever letting on that anything was wrong.  I couldn’t fall apart.

I’ve been there to support friends, co-workers, and a few family members if they’ve needed me.  Or, I’ve been supportive of them in their goals, dreams, educations, careers, relationships, raising kids, etc……just being there……being a friend.  One thing I’m not good at though, is asking for help or support when I need it.  It’s very hard. It makes me feel selfish.  It embarrasses me.

This week, I had a moment that I’ve always considered “weak” for me.  I was in my classroom with a colleague after school, talking about school things.  The conversation turned to something personal, and I fell apart!  I burst into tears.  I sobbed.  I think my friend/colleague was surprised because she hadn’t seen me that upset before.  Everything I’ve been dealing with caught up with me, and no matter how many positive posts I put on social media to try to keep my spirits up, I just couldn’t hold it together at that moment.  I was tired.  I was hurting.  I was tired of being strong.  During the conversation, another friend came in, and they sat there with me, letting me vent and cry, while they hugged me, and told me it was okay to lean on them, and that everyone needs to feel safe enough to do that sometimes.  Things have been very hard for me lately, and I guess my emotions were like a pressure cooker.  While I have the best husband/friend in the world, I guess I needed to know that I can also lean on someone else for support sometimes.  Al is still, and always will be my ROCK.

Of course, at the end of the conversation, my friends and I hugged again, and being me, I had to make a silly joke to make everyone laugh!  One of the friends said that it never fails….Lauri will always try to cheer someone up, even through her own tears.  She said it was a “gift.”  I have never thought of it like that.  I do believe that the cure to a lot of painful situations is laughter, but I never realized that my sarcasm or self deprecating humor was a gift.  That was nice to hear.

I have learned that it’s okay to lean on others.  I will still struggle with it, because it’s just not like me to show that type of emotion very often, but I know it’s okay, and no one will think I’m weak for doing so.  I’ve also learned through this health issue who really cares about me (for those who know the specifics….for others, I am not really ready to talk about it much yet, but I will at some point). Phone calls, texts, emails, prayers, good vibes………it’s meant the world to me.  It’s been a huge struggle for me, and it’s nice to know that I don’t always have to be the strong one all the time.  I have people in my life who love me, and really do care.  They’ve shown me.

So even though sadness is a part of life, it can be a positive experience in that you learn who you can trust, and who truly cares and will be there for you. They make you realize you aren’t alone. They make it okay to not always be the strong one for everyone else’s sake.  They make it okay to be “weak” sometimes.

Be Kind, Coping, Don't Judge, Invisible Illness, Support, Uncategorized

Invisible Battles

“Everyone you meet is fighting a battle you know nothing about….be kind!”  I’ve seen this quote many times, and can still remember the first time I saw it.  It was on another teacher’s desk.  I read it, and it stayed with me.  We all have battles that no one sees.  They may be emotional, personal, physical, or mental.

I saw a couple grumbling about a healthy looking young man parking in a handicapped parking spot, but he had the proper tag allowing him to do so.  I guess his handicap wasn’t apparent.  Maybe he was perfectly healthy, and driving his elderly grandfather’s car, but maybe he wasn’t.

Not all conditions or illnesses are apparent.  Arthritis, lupus, cancer, diabetes, tumors, depression, anxiety, high blood pressure, fibromyalgia, OCD,  hard of hearing….all of these conditions may or may not be apparent, but each one impacts the person’s life each and every day, whether we see it or not.  As someone who has had some scary health problems that haven’t always been visible, I’ve been told to “Get over it,” “You’re not sick,” or my favorite….(from one of my least favorite people)…”Liven up!”  Feeling pain from arthritis in my back, knees, hands, and now my feet has been excruciating at times, and I’ve been dealing with that for most of my life. Having social anxiety is also very difficult (I think we used to just be considered “shy”), but I just have to deal with it.

It’s not for us to decide how someone deals with these conditions.  It’s important to offer support and understanding to anyone who may be struggling.  We don’t walk in their shoes, and don’t get the right to condemn or criticize them for the way they’re coping and managing, or criticize them for where they park.  Each day is different, and there are highs and lows.  I’ve known people who seem perfectly happy and healthy reveal that they suffer from clinical depression or bi-polar.  They’re just really good at concealing it in public, or are under the care of a physician who has found the right treatment for them.

Recently, I’ve been dealing with some serious physical health issues.  A year ago, I also went through something very serious.  Ten years ago, I went through some other health issues.  None of these are/were obvious by looking at me.  I’m also very good about pretending that I’m okay, and making jokes about my conditions.  But sometimes it really is scary.  Sometimes we just need understanding and not judgement.  Sometimes we need a hug.  Sometimes I just really want my mother.  I’m fortunate that I have supportive people in my life, and not ones who judge or criticize me or how I deal with pain or illness.

So if that perfectly healthy looking young man parks in a handicapped parking space, don’t judge.  He may be epileptic, or have a bad back, or maybe had recent surgery. Remember, everyone is fighting a battle that we may not see…..be kind.