Not Giving Up!

I gave up on writing for a long time because sometimes I can’t remember verb tenses and punctuation. Also, some days my hands feel like the joints are morphing into marbles. You might wonder why this is so frustrating. Well, I’ve got an associates’ degree in Journalism (I was a stellar journalism student) and writing was and still is my first love.

A few months ago, I found out that I have nine white lesions on the front of my brain. The neurologist said it might be MS, then he determined that it wasn’t MS. Then he said the lesions are consistent with Rheumatoid Arthritis, but my rheumatologist said RA doesn’t affect your brain that way. Some day they well let me know why my brain doesn’t work right anymore, but I’m not holding my breath.

I thought I was going crazy because I was seeing distortions in my vision. The Drusen (sharp crystals) in the nerve cables of my eyes have decided to start stealing my eyesight. I have 56% of the nerve in my left eye, and a whopping 68% in the right eye. There is no treatment to stop it or make it go away.

I am in the middle of a flare of both fibromyalgia and RA. I hate the pain, fighting with the doctors, applying for disability,  and this week, the never-ending tears that have my eyes so swollen I am starting to resemble a walrus. Today, I am going to count my blessings, take a shower, and keep moving forward.

My son came home from the war a bit broken but after a year, he’s starting to laugh and smile again. My husband loves me in spite of my mood swings and almost constant tears. I have one friend who never forgets about me, and our friendship means the world to me. I have a goofy feline companion who stay beside me and head butts me when she thinks I need to quit feeling sorry for myself. I have a roof over my head, and I am still breathing. Time to take a shower because you know what? I am not giving up.

Wake up: THIS IS YOUR LIFE!

People who battle autoimmune conditions have what is not so affectionately known as flares.  Every day brings something new, and often individuals experience symptoms that no one seems to have a clue about how to diagnose what is going on, or worse your physician ignores you. How do I know, because it happened to me on what seemed to be a regular basis!? This rough and rocky period of my life went on for approximately eight years.

Fortunately, now I have some doctors who actually listen to me, and don’t treat my like a “hysterical female”. After complaining about my brain not working right for the past eight years I found a neurologist who actually did a brain MRI. It is worth mentioning at this point that I used to be a total geek. I excelled at everything I tried to accomplish academically. It may sound somewhat narcissistic but I was truly gifted. 

Then one not so fine day, I woke up and I couldn’t remember how to write. I couldn’t remember how to use verb tense correctly in a sentence. Writing was my first love in life. I have a degree in journalism. I remember yelling out loud, “What the hell is happening to me?” Sadly, there was only silence that filled the room.

One doctor prescribed D-Amphetamine for ADHD. That made some sense but in my befuddled brain I wondered why I had managed to survive academia without “speed” before? Still, I was desperate to hold onto what was left of my mind at that point so I did what every compliant patient does. I took the drugs.

Things went from bad to worse. My pain increased two-fold, my migraines came back, my chest started feeling like it was going to explode, and then one day I couldn’t read music either. Music was my second love in life. I only plink around on a guitar, but I used to sing professionally.

I am a strong woman, but that day I curled up in a little ball and sobbed my heart out. Physical disability is one thing, but losing your mind is a completely different thing for a person like me. Let me rephrase what I just wrote; losing your mind sucks for anyone!

Ok where was I going with this? Ah yes, the MRI. My other passion in life is reading, so I felt a trip to Barnes and Noble was in order, to bring me out of this state of hopelessness (Reading was also becoming a challenge).  My cell phone rang while I was receiving a reader advisory from the clerk. It was my neurologist.

“Mrs. Weaver the test went very well, but we found nine lesions on the front of your brain that are consistent with Rheumatoid Arthritis or Multiple Sclerosis. We are not ruling out M.S.”

My tongue seemed to have gone numb as I struggled to say something back. “I’ve been having problems for years, but no one would listen to me.” Unwanted tears began to slide down my face.

“That is unfortunate,” the neurologist said.

Now I wait for test results, and I am off my autoimmune meds and have been for two months. I will be like this until the doctors have a definitive diagnosis. I will get through all of this, but I’ve learned that every moment in life is precious. Don’t take anything for granted, and don’t waste your time worrying about what other people think.

It is my sincere hope that other people who have chronic illness can learn something from this. Please! All of you keep a health journal and document everything that is out of the ordinary with your health. Find doctors that will listen to you. Maintain your dignity, but remember you are paying for a service, and don’t settle for inadequate health care providers.  Don’t let what happened to me, happen to you. Wake up! This is your life.

 

Freak of the Week!

Today is one of those days I want to scream and scream, and then scream some more because of how frustrated I am feeling right now. It is one thing to have an autoimmune disease as well as Fibromyalgia, it is another thing to deal with the DMARDs (disease modifying anti-rheumatic drug) and the TNF Blockers (tumor necrosis factor alpha blocker). Then if you throw in the fact that I am down to one antibiotic I can take into the mix, well it all adds up to what my best friend jokingly calls me, “Bubble Girl”.

She understands what may happen if I catch a virus that causes a secondary infection; I may not get over the infection. Oh, and before I forget did I mention that the one antibiotic I can take (Biaxin) is famous for shutting down your kidneys? My goofy disease, and the meds I take make for some pretty stressed kidneys. So, that one antibiotic isn’t really an option either for someone like me. My problem is how do I get other people to understand how serious this is?

I try to explain it to friends and family, then they look at me like I am all of the sudden starring in “One Flew Over the Cuckoo’s Nest”.  Well, I could wear a mask when I am in contact with other people.  Now there’s a suggestion that’s workable right?

In my case, it depends on the situation. Once again, I’ve been invited to another party. I want to go and I don’t want to be considered rude for not going all the time when I am invited. I’ve known some of these people since I was nineteen and invincible.

Another thing that might be worth mentioning is that I’ve been a “biker chick” most of my life. I was building a 1948 Flathead Harley Davidson when my world flipped upside down. I’ve been dreaming about that bike since I was sixteen. Someday, I will ride it (Heavy sigh here).

Sorry I got lost in my own little fantasy world for a minute or two. Getting back on track with why I feel the way I feel right now. The party I am invited to is a biker party. So do I wear the mask? Maybe I should wear a sign that says, “Stand back 20 feet if you have a cold!”.  I am sure I will be stellar at the party with those accessories.

I should just quit worrying about the whole thing right? Why should I worry about any of it? If I let myself get any more upset about it, the pain will take my mind off of all of it. I hate being isolated and misunderstood. What would you do if you were me?

Bubble Girl 😦

P.S. I will try to be more inspirational and upbeat on the next post.

Fighting the “Good Fight”

“Some Days are Diamonds and Some Days are Stones” is a line from an old John Denver song. I think it describes perfectly how it is to live with a chronic illness.  Some days are so good, they sparkle like diamonds, and then some days are so bad, they leave you feeling like you’ve got a huge stone where your heart used to be. My mission right now is to hang on to those “diamond” days, and keep hoping for more.

It is hard to hang on sometimes though, when it all feels so overwhelming: simple household tasks, wondering if the doctors believe you, waiting on your disability decision, the crippling fatigue, the pain, and many other things, but most of all it is the grief I feel for the person I used to be.  When I look in the mirror a stranger’s face looks back at me.

That stranger doesn’t have much hair left, she’s emaciated with purplish black raccoon marks around her eyes, the wrinkles that used to be laugh lines are deep furrows plowed into the skin from grimacing when there is no relief from the pain.  The  stranger’s eyes are almost hidden because they’re swollen from crying due to the depression associated with Rheumatoid disease and Fibromyalgia.  Wait; I still recognize those eyes.

The irises are forest green with brown edges, and the pupils still have what artists refer to as a “life light”.  That light still burns with a lust for life that comes from having a courageous spirit. I’ve always been a strong spirited woman, and I can’t afford to loose my courage now, even though the past couple of days have left me reeling a little.  Flares (The times when the monster in my body tries to take control.) often do that to me; however, so far I’ve survived them and eventually the flares do come to an end. I am lucky today because the pain is better.

My reflection in the mirror smiles. The woman in the mirror isn’t really a stranger, a little worse for wear and tear as the old saying goes, but it is still me. My physical body will never be the same, still l have my courage, as well as my inner strength.  Grieving for my old physical self is pointless because it only holds me back from the joys of the present.

The sun is shining outside my window and the snow is melting. If I look really hard I can see little bits of springtime green. I don’t know what tomorrow will bring, and I don’t have time to worry about that because right now, all I have is today. Today can still be one of those “diamond” days, if I don’t let my heart turn into a stone.

The Magnificent Buffalo II

About four years ago, I began to feel a lot of pain in my right hand. Like most women my age, I started popping Ibuprofen like candy and motored on because that is just what we do.  The next thing I new my whole world crashed around me, and doctors as well as friends labeled me as a hypochondriac.

I felt ashamed because my “Super Woman” powers had deserted me. I also thought I was crazy. My whole world dissolved into a kaleidoscope of pain, and I was drowning in a quagmire of depression.  A year ago I was diagnosed with Fibromyalgia and Rheumatoid Disease (formerly known as Rheumatoid Arthritis). I thought, no problem I can beat this!

After all, I’d conquered so many things in life, I was certain I could squash these medical conditions, and walk away like a champion prize fighter.  Needless to say, things didn’t quite work out that the way I thought they would. Now, I’ve filed for disability and life is a daily struggle. Sometimes, I am too sick to get out of bed; however, I still have good days like the day I captured this buffalo on film. That day my Spirit was renewed, and I realized it was time to count my blessings. I knew it was time to reach out to others who suffer with these “freak” conditions.

How did I come to that conclusion?  To put it simply, I believe that animals can be Spirit guides. We need those animal guides when we are too blind to see what is important.  As an animal Spirit guide , according to the book, Medicine Cards (c) by Jamie Sams and David Carson, “The medicine of Buffalo is prayer, gratitude, and praise for that which has been received. Buffalo medicine is also knowing that abundance is present when all relations are honored as sacred, and gratitude is expressed to every part of living creation,” (p. 113).

I’ve sat alone in my warm and delightfully shabby green velvet wing-chair, and cried my eyes out because my friends seemed to have disappeared because I don’t see or hear from many of them. Still, I can hold these precious memories close to my heart, and I can still find great comfort in the fact that I was blessed just to have those experiences in life that so many never do. I am thankful for all my friendships; the ones that have endured during my illness, as well as the ones that have faded away.

With the rising smoke from the candles I’ve lit, I send up prayers of thanksgiving for my home, my husband, and my friends. I thank the “Powers that Be” for the winter snow that replenishes the dry earth, and fills the rivers as it melts in the spring even though the winter storms bring me pain. Strangely enough, I am thankful for the fact that these bizarre health conditions made me slow down enough to contemplate my life and put things into perspective. Most of all, today I am thankful for the Buffalo who paused long enough in his search for much needed nourishment to look me in the eye, and let me take his picture.  Because of him, I am humbled because of my many blessings. Because of him, life has taken on a totally different meaning.

My hands are swelling and I won’t be able to write much more, but please if you suffer from a crippling disease or a chronic illness stop your tears, and look around you at the world. There are so many things to be thankful for and so many blessings to count. But know that some days the pain will blind you to these things and it is then you will have to look hard to find things to be thankful for.  Still, if you look hard enough, you will always find a few blessings that you can count.

The Magnificent Buffalo

Having a chronic illness can often color your perception of life in shades of grey. However, being lucky enough to capture this majestic beast on film gave me a spiritual kick in the butt that I desperately needed to start living again.