May is Lupus Awareness Month!

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I’ve been battling this disease for a long time and I must say that it sucks!  Prednisone sucks!  Pain sucks!  Your body killing itself sucks!

SLE or Systemic Lupus Erythematosus  can affect the joints, skin, kidneys, blood cells, brain, heart, and lungs.  Symptoms vary but can include fatigue, joint pain, rash, and fever. These can periodically get worse (flare-up) and then improve.

While there’s no cure for lupus, current treatments focus on improving quality of life through controlling symptoms and minimizing flare-ups. This begins with lifestyle modifications, including sun protection and diet. Further disease management includes medications, such as anti-inflammatories and steroids.

I have Lupus (SLE) and it has given me problems with my Kidneys, Heart and Lungs.  I also get the neuropathy in my hands and feet, as well as skin rashes, photo sensitivity

The side effects of the Prednisone is almost as bad as the disease itself.  From the weight gain, blood sugar increase and rage, you look like a chipmunk with a cheek full of nuts!

So, what do you do when your body produces antibodies that should kill off infection instead attack your organs?  You pray, a LOT!  You beg to feel better.  You hope for a cure and you have a stronger faith in God that you will make it until the next day.

Most people who have Lupus also have another disease that effects them as well.  Mine is Fibromyalgia, which is equally sucky.

This disease effects each person differently and is hard to diagnosis.   Only 20 years ago, Lupus was a death sentence with only about 4 in 10 people surviving.

Some people require chemo therapy to combat Lupus, shutting down the immune system so that it doesn’t continue to attack the major organs.  It’s hard to believe that we have to shut down our immune system to combat our internal death.  Nothing like your body hating you so much that it wants to kill you.  Ha, ha.

I’m on kidney medication for the rest of my life; because Lupus causes me to get infections as well as blood in the urine.  I have chest pains due to swelling of the lining of my heart and lungs.  I have to be careful around those who are sick; because I am 75% more likely to get what they have, only worse.  I’m more susceptible to bronchitis and pneumonia.

Skin rashes are quite common for me, especially if I have been out in the sun for long periods of time.  It’s why I always try to wear a hat and my sunglasses when I go out.  It’s not unusual for me to have that “butterfly” rash on my face, to run a fever and hurt.

Put On Purple!!!!  May 10th is World Lupus Day.  As purple is the ribbon color for Lupus, I encourage people to wear purple on the 10th in support of the need of more research, awareness and knowledge for this autoimmune disease.

For more information:  http://www.lupus.org

 

Frustrations

This past week has been full of some ups; but mostly downs.  I spent 3 days in an unease state.  I could not escape the feeling of dread, uneasy and fear.  I can’t explain it; but it had me very low.  There was a lot of crying, yelling and prayers.  It culminated with a Friday out with my son that ended abruptly when I just couldn’t stop crying and we just headed home.  The poor kid, he didn’t know what to do and I explained to him, that for the first time in 17 years, he has no buffer in his life between us that blocked out my depression from him.  Having PTSD sucks some days.

This is truly the first time that I had a major meltdown with it in a long time. Nothing I did could bring me out of it.  I went to bed early each night.  I took some sleep aids and slept it off like a bad hang over.  Yesterday, we completed the shopping I couldn’t and  ended our evening with church, sandwiches and smiles.  Came on hard and fast and left the same way, as if it never happened.  SMH.

I’ve been doing a home bible study as well as my weekly with my girlfriends.  I’ve got my nose in a few books, too.  One of which is called “Eve” by Wm. Paul Young, the man who wrote “The Shack”.  So far, it’s really good.  I’m only a few chapters in, though.  My home study is another Max Lucado called, “He Still Moves Stones” which is amazing.  I’m burying myself in God’s word, worship and singing to Him.  One of my daily devotionals comes from a site that also sells books and I got an incredible deal on some good ones.  I purchased several of Max’s books for only $5 each.  I’m looking forward to reading each one.

On Thursday, I stopped at Staples on my way to physical therapy and while crossing in the crosswalk, a stopped car proceeded to drive and hit me.  He clipped my knee.  I am not hurt, more outraged by the incident.  It was a Senior Citizen and being me, I am sure that he couldn’t have missed seeing me.  SMH He never stopped, even after he heard my knee hit the car.  Just kept on going.

My son got his learners permit.  Still doesn’t want to drive the car.  LOL!  After our vacation in June, I’m going to hire a driving school for him to take lessons.  Who knows?  Maybe my dad will take him out.  You never can tell with that man.

Today I’ve made two loaves of homemade banana bread and my wings are cooking up for dinner.  Sometimes, I wish I had more people to cook for.  I miss cooking for large quantities of people.  I remember the times I’d invite my co-workers over for dinner and how much I enjoyed cooking for them.  Since it is just the kid and me, I haven’t cooked big in a while.  😦  Heck, I haven’t made a roast in so long, I almost forget how to do it. LOL!.

I’m still waiting on God’s promise.  I am not being very patient.  I am ashamed of my impatience.  I’m trying.  I’m not good at it at all.  I guess that is why God is still making me wait.  <sigh>  I’m jealous of the time others get to spend with him.  I am looking for an acknowledgement of some kind.  A sign that I’m not a fool.  I ask so much of God and I still don’t know how He is putting up with my crazy or how He’s going to make it happen.  I pray a LOT!

PT is going as well as PT can go.  Pain in my shoulder is reduced.  THANK GOD!  I am getting more movement in my shoulder and they use the tens machine on it as well as they put a pain patch on me afterwards.  It’s a steroid with a battery operated pump that pushes the meds through the skin.  I wear it for 3 hours.  I think it’s supposed to help break down the calcium deposits in the area.  Only 4 more weeks to go.

Can hardly wait for June to get here.  Heading up to Virginia to visit a friend and am super excited.  He lives in Staunton, so I’m thinking I might also head to see friends in KY and TN as well, since I’ll be there. 😀 We shall see.

Life is certainly interesting.

Prompt….

I’ve been doing some guided journaling with prompts in my personal journals and one of the prompts was to describe something that is happening with my body, without emotions, but the physical manifestation only.  Suggestions were sex, work, etc.  I wasn’t sure what I wanted to do until my head started twinging and I knew what was coming.

MIGRAINE!!!

I’m sitting in church, listening to the sermon, under the florescent lights and it begins.  I feel a twinge over my brow.  It is always like this under the bright, white lights. I take a deep breath and try to concentrate.  It isn’t easy, I know what is coming.  I glance at my watch and wonder how much longer I can sit here.  A small pulsing begins to take form in my head and I know it won’t be long until it spreads.

I feel the pain inching its way across my forehead.  UGH!  Not now.  I try to listen to what the Pastor is saying; but it is a lost cause.  I am trapped in the ugliness.  Time ticks by second by second.  I can almost feel the second hand on my watch moving slowly around the dial.

Breathe.

Slow, steady breaths, in and out.  Trying to hold it together until the last Amen.  My stomach begins to turn.  Great, the nausea is starting.  I pray to God that I won’t throw up.  I stand up for the benediction and quickly escape to the exit.  I leave so as not to have to talk to anyone.  So I do not have to stay another second under those lights.

The car ride home is a blur as I am lost in my body.  It takes all that I have within me to make it to the front door.  Pain lashes my head, spreading rapidly, outward and inward.  I’ve squinted my eyes from the harsh lights.  I have no music on; because the thought of a noise will make me implode.  Breathing in and out.

The car air freshener is making the nausea worse.  I want to throw it out the window; but I don’t; because the effort is way too much.

HOME!!!

I pull in the driveway and stumble to the door.  I go inside, grateful I can lay down.  I pop 3 Excedrin, go to my room, strip out of my clothes, climb in bed and pray for relief. It is pitch black in here.  Perfect.

I lay on the bed, not moving a muscle.  If I move, the pain will shift and lance through me once again.  I do what I hate to do in these times…..I concentrate on the pain.  Each beat of my heart has the pain pulsing through my head.  My hair hurts.  I am paralyzed by my thoughts as my focus is intently on the crushing, violent stabbing going on inside my body.

I’m sweating. I shiver.  My stomach is rolling.  I can hear noise in the distance, as if a thousand buzzing flies are somewhere close by.  Don’t concentrate on the pain.  It’s too much to handle.  Let me black out.  Time is my enemy as the seconds turn to minutes.  I feel each one of them as they slowly drone on.

Zap.  Stab.  Throb.  Pain so crushing I think my head will cave in, my sight will disappear and my stomach will empty its contents all over the place.

Praying, praying, praying.  “God, help me through this pain.”  I say it over and over and over again.  Nothing seems to help.  The meds take too long to kick in.  The internal struggle is torture.  It is days like this that I hate my body.

I finally drift away in oblivion. I pray rest will restore my body.  I am so weak. Migraine hang over will soon encompass me and I hate that almost as much as the Migraine itself.

Ortho today

I went to the Orthopedic doctor today and NO SURGERY!!!  YEAH!  So grateful to God for this blessing.  I’ll be in Physical Therapy; but no cutting.  I was a wreck going into this appointment.  I listened to all the cousins tell me how horrible it was going to be.  How painful it was going to be and how long I’d be down; but turns out, I was making a mountain out of a molehill.  😀

I prayed to God about how I didn’t want to have surgery.  I just can’t be down for that kind of time or that kind of pain when I can only take Tylenol.  The doctor, however, was very impressed with my tolerance for pain.  After explaining the original injury in 2009 and how I first had the EMT put it back in place and then put it back in place myself by slamming my shoulder into the wall, he was even more baffled.  He told me he was impressed with my tolerance, especially since he used to be a sports medicine doctor for MLB and has seen the same injuries on the field with a lot less tolerance.  I left the office in high spirits and praising God for His mercy!!

I just took a personality test on  http://www.16personalities.com  that identified me as INFJ or Introverts, Initiatives, Feelers, & Judges, I have to say that once I saw the results it all makes sense.  I often wondered why I am so often misunderstood.  Why I feel things so much more than others.  Why I’m so different to others and why I can write things far better than I can verbally communicate things.  Anyway, I got a better understanding of the way I am vs the universe and I have to say it is nice to know that I am not as unusual as I think I am.  I’m part of the 2% of woman and 1% of men who fall into this category.

I’ve been working a lot on my journaling this week.  Just trying to get the thoughts out of my head and onto paper.  I’m using journal prompts to get it out there and it’s interesting some of the prompts I’ve come across.

I’m getting ready to send out some additional RAK’s for this month since I wasn’t able to do so while I was down with the shoulder.  I also made a painting, inspired by our trip to the Ringling Bros. Museum. 20170316_203717

God Bless! ❤

Life’s Lemons

For the last 24 years, I’ve been in pain 24/7 for 365.  This is a fact, not a whine.  This new pain is bringing me down low.  Just when I think this is going to be my year, life kicks me in the gut.  I don’t think I’ll ever catch a break.  I truly hate to complain about the pain; but it is so bad that I am back to vomiting over it.  UGH!

I finally decided that wearing a button down shirt is my best option.  It is the “least” painful thing to wear when you have to go from one outfit to another.  It is still painful; but I’m not having to lift my arm as much as when I wear a pull over.

The pain is radiating from the fingers up to my neck.  It is excruciating and I want to scream all the time.  I’m not; but I want to do so.

I sometimes feel like God is playing a joke on me.  That I am the butt of all of his jokes.  “Hey, look what I can do to this gal” and the next disaster strikes.  I take it all in and smile while I’m doing it because I know He’s got my back and won’t let me flounder.  Boy am I a fool.

Don’t get me wrong.  I love God with all my heart and soul. It is just that I feel so lost and alone.  For every step or two I take, I am kicked back a mile.  I haven’t been able to do anything outside of the house in almost a week.  I just drove my kid to and from school and a small trip to the grocery store; but that was exhausting to me.

I haven’t even made dinner in three days.  No, my kid won’t starve; but I’ve always made sure to make him a meal and I just can’t do it.  I’m so wiped out.  I can’t even brush my hair.  It’s a raccoon’s nest on steroids!!!  I look like holy hell.

If this is supposed to teach me something, I certainly would love to know what.  I also feel that I could have learned the lesson without the pain.

My MRI is on the 16th and ortho appt. is on the 22nd.  I can hardly wait to see what happens.  I just want to move forward.

Sometimes Life Sucks

In 2009, when my ex tried to kill me, he managed to dislocate my left shoulder.  It has not been the same since.  It took me several months to get it to stop popping out and having to put it back in place by slapping it into the wall.  Not fun.

Well, this past week, I lifted my arm and BOOM!  It is ruined!  I’m in an immobilizer sling right now and awaiting an MRI on Thursday and follow up with an Orthopedic dr.  UGH!!! I can’t believe this is happening.  I can never seem to catch a break!

The pain is immense.  It has been so bad that today is the first day I haven’t sat up and vomited.  I’m taking Tylenol for the pain.  Yup, that’s it.  Nothing more.  Thank you body for hating me so much that I can’t take anything stronger.

At present, I am cursing the universe for this one.  I’m also cursing the ex for it as well.  I can’t brush my hair.  I can’t lift my arm so I can only imagine when I’ll be able to wash it and going to the bathroom is murder!  I never knew how hard it was to pull up the panties one handed until now.  OH and the dance I have to do to accomplish it is too funny.

I cannot even begin to tell you the pain this thing has caused me over the last 8 years; but I never expected it to turn out like this.  I even kept my kid out of school to help me; because I am useless.  UGH!

Now, I await test results and doctor inquiries.  I am not happy about this at all.  No I Am NOT!  It’s times like this, I wish I had someone who could take care of me.  Alas, I do not, so I will figure out how to do it all on my own.  That’s how I usually do things anyway, so why should this be any different.

Any movement is painful.  I have cried more than I care to admit from the pain.  Sleeping is hard.  Changing clothes is hard.  I changed into this nightgown and I will not be out of it anytime soon.  IT HURT!!!!

Time is crawling by slowly.  I’m trying not to borrow trouble; but I guess I need to just pray and hope.  It is all I can do at this point.

Pain

Well, this has been a bad week thus far.  Monday evening the constant pain crept up a notch.  Slowly over night, it became more and more excruciating.  By Tuesday morning, I was praying for death.  I stayed in my blackened room.  (I’ve stapled black trash bags over the windows and have two black sheets for curtains out of necessity for these days) Sound, light, and smell are so heightened on these days that being in a darkened room is for the best.

Trigeminal Neuralgia is so hard.  It is especially hard when you have full facial nerve damage and suffer with it 24/7 – 365 for 24 years.  On a daily basis, I have numbing that crawls across my face to the back of my head like a worm beneath the skin.  Certain facial movements cause lightning strikes to go off.  A kiss can turn into a storm!

However, after all these years, I have learned to deal with the pain.  I push it back by keeping busy and distracting myself from concentrating on the pain.  There are some days  when I can’t handle the pain.  It overwhelms and lays me low, like this week.  It didn’t help that a rainstorm came through yesterday and intensified the pain.  UGH!

I have had this disease for 1/2 of my life now.  I can’t even remember what it is like to not have the pain with me constantly.  Sometimes eating or drinking will cause me such intense pain I want to cry; but I don’t.  I wear the mask.  I keep it to myself.  So much of my illness is personal.  I just don’t share it with the people in my life.  Most people don’t even know I have problems; because I’ve never told them.  I use this blog, though, to get it out of my mind.

Life has not been good to me.  I have made the best of every bad situation.  I’ve looked for the good in it all.  Each lesson is taken to heart and has not stolen true self.  I’m sure I will be used and abused again; but I’m hopeful that I will stand strong after it is all over.

God’s plan for my life is what is getting me through it all.  I look forward to what he has in store for me.  I’m actually a bit impatient for Him to start this new life; but I’m trying so hard.  It is not easy.  I pray A LOT!

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SVU

SPOILER ALERT if you watch SVU and haven’t seen it this week yet!

So, I just watched this week’s Law & Order SVU and it dealt with Domestic Violence.  A subject near & dear to my heart.  A young boy is playing on a youth hockey team sexually assaults another player for losing the game because his father tells him to do so.

The boy who is assaulted winds up dying due to complications with the injury.  The young boy leaves the locker room and then goes back into said locker room and assaults the other player with a hockey stick to the rectum, as per daddy’s orders.  As the case goes on, they discover that the father is abusing the entire family and they see that he’s got them under his thumb.  The older teen brother finally provokes the father and is assaulted and records the incident to try and assist his younger brother.  There is also an elementary school son that will eventually receive the same legacy if dad isn’t stopped.

Okay, why am I writing about this you ask?  It brought back the memories of what happened after my ex tried to kill me in 2009.  I was assaulted and nearly killed by him and afterwards, we relocated south and in October, 4 months after said incident, my son was showing signs of acting out and misbehavior.  I took him into the Children’s Advocacy Center here and got him enrolled into counseling.  Immediately, it came to light that his father was knocking him around, giving him beer and showing him pornography on the internet at the age of 8.  I was devastated.    He was told not to tell me.  His father was doing all of this behind my back.  I blame myself.  At that time in my life, my stress levels were out of control due to the ex and I was constantly down due to my Lupus.  Taking Prednisone, going in and out of the hospital, sick all the time, etc.

I hated myself when I found out.  I cried so many tears for my baby boy.  I wanted to kill the SOB.  My son & I worked hard to recover from this terror.  After the June assault, we had a permanent restraining order issued and the ex was not allowed to come near us at all.  I am grateful for that.  I also am grateful that the man has since passed away and can no longer hurt my boy.

At any rate, the show triggered this angry response from me about the whole Domestic Violence issue.  I stood my ground, went to court, wanted him to pay.  I’m not like other women who allow their spouses to have that control.  He hit me.  He hit my son.  He tried to kill us; because I know if he had killed me, he would have killed the boy, too.

My Lupus has been under control for the last two years.  My stress level is greatly reduced.  I am a much better person these days and my mental state is much improved.  I still have nightmares from my PTSD; but I am in control for the most part.  I am not a mess and we are living a great life.

I wish more women and  men who are abused by their significant others would stand up.  We need to eradicate this type of behavior.  No one should be allowed to hit, emotionally abuse, sexually abuse, cheat, etc. anyone.  It is horrible and needs to stop.

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ENT

So, went to the ENT yesterday and received the news that I have a 1/2 dollar sized cyst on my vocal cords.  Gave me an IV bag of antibiotics, a prescription and a return appointment.  Hopefully, this will get rid of it otherwise it will be surgery to remove it.  Not wanting that at all.

On a happy note, I found this great comic/cartoon that I have fallen in love with.  It’s Panda & Polar Bear.  Now, for those who do not know me all that well, I just love bears.  I especially love Polar Bears, so this was a great find.

http://www.pandaandpolarbear.com  is the website.  I’m in love.  I spent over an hour reading all of them.  Laughed my ass off.  So cute and funny.  Even saved a few and sent them to a friend.

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Just an example of one above.  LOL!

I can’t sleep.  My head is splitting apart right now.  My mind won’t shut off and I just thought I’d make a quick post. 😀

So much pain

I am in so much pain I can barely breath.  My Trigeminal Neuralgia is at full force today.  The pain is radiating through my entire head and the numbness that is crawling across my face is making me crazy.  The light is obnoxious, the sound deafening and if I wasn’t such a bitch, I’d eat a fucking bullet right now.  Alas, I am not going to give into this mother fucker.  I will conquer it.

I’m allergic to pain medications, so I have tried several other methods of dealing; but to no avail.  Sometimes, nothing helps me at all.

I went to my class tonight and tried my best.  I could hardly wait to get out of there, though.  I love my instructor; but everything was so annoying to me tonight.  UGH!  I don’t even know how effective it was; but I was there.

I despise these out of control days.  I can’t take it when the tears stream down my cheeks in rivers of misery and  there is nothing I do can stop them.  TN SUCKS!!!  It’s year 24 of this misery and you would think I’d be used to the 24/7 crazy; but there are days I can deal and other days when no matter what I do, it overwhelms me to no end.

I remember back in 1997 when the neurosurgeon suggested that they remove the nerves from my face and I was horrified because there was such a high risk of permanent paralysis and I don’t think it would have helped anyway.  In 2012, I went to another specialist and he decided I wasn’t a good candidate for gamma knife surgery, either.  Nerve block did nothing.  Allergic to narcotics, can’t even take ibuprofen. This shit sucks.  I’m only 48 and I can only imagine the next 50 years of this pain.

OMG, I just realized I’ve lived half of my life with this shit!  UNBELIEVABLE!  I could just smack the doctor who did this to me.  Heck, I can’t even sue them because I was in the military.  I’m so over it.  I sometimes wish I were normal; but I’d probably be bored. LOL! Such is the life in the mind of a mad woman.