Saturday, July 28, 2012

Still Sick from a Flare - I Need Help

Although it has been two weeks, I'm still sick from a lupus flare. The swelling has gone down. My joints are in extreme pain. I'm beyond exhausted. Fevers are overwhelming. Because it didn't show up in the urine test or blood test on Monday, oh well! That's the way it has been the past few years. I hope this move will open doors for me to have new medical eyes on my illness. I love my rheumatologist, but I think 17 years has blurred the care. Too many pills and not enough care. I know there is no cure for systemic lupus. I know there has been damage done to my body from this illness. But I also know there are new medications out to treat it. I haven't been given those meds. The old meds I've been on have ruined my metabolism. My surroundings have destroyed my soul. Not being able to go outside and walk, rest in a peaceful setting, has played hard against my body, mind and soul. 


There is hope in this move. Hope for renewal of my body. Control of this horrible disease. Hope for a new life. Hope for friends. Hope for chosen family. Hope for a family. The closing of four wall prisons that have robbed me of human touch, a kind word, the help of a neighbor who cares. Something I've not had in my life for a long time....love. 


It is hard to explain these things to people who have family, friends, a life filled with activity, purpose, joy, a peace that only home gives. I have been slowly dying for the past few years. With the stress of it all, this illness has slowly closed in like a dark cloud not willing to let go of its own nightmares. I see light in the cloud break. Now I have to find a way to get through to the other side.


For now, it is by UHAUL. How I wish a miracle would fall into my lap leaving $1800.00 so that I could hire a moving company to move my belongings to Wilmore on August 16th. As it is now, I have to hire someone to load a UHAUL the day before, Sandy's brother will drive it up, Sandy and I (along with Rascal) will drive up separately, a long trip ahead. The moving company would take so much stress off. If only.... I got a moving quote today....$1800.00. That is WAY too much.


I've been tempted to put a paypal.com link on here and ask for help. But not being smart enough to figure out the link, I could only list my paypal email (MaryJC83@aol.com) and ask for donations to be sent to it. The door is open, but I need help. 


I've been sick in bed for a week now. I have only packed two boxes. Sandy is recovering from gall bladder surgery. There is no one else to help. Time is closing in. I need help.

Tuesday, July 24, 2012

I Will Never Understand

Yesterday I told my rheumatologist about the severe swelling. Took three days to go down. He did tests and gave me prednisone. I hate prednisone because of the damage it does. There HAS to be another solution to swelling! Yesterday was also the last day I saw my rheumatolgist. I'd been his patient for 17 yrs. No word of good luck, sad to see you go, etc. Made me feel bad.

Tuesday, July 17, 2012

Traveling with Lupus

If you have systemic lupus, you know how it feels to travel. It is HARD! Traveled 12 hours up and 14 back. Went up to KY Wednesday morning and came back Saturday. Pain is a horrible side effect of suffering when you want to go somewhere you love so much. One of the worst side affects is swelling. Going up, swelling went down quickly. Coming back, took a couple of days. For those of you who suffer from Systemic lupus, this post is for you. ODD that it may be, you will understand.

AFTER ARRIVING HOME:


TWO DAYS LATER:

If you've ever felt the misery of this horrible disease, you'll know how bad the pain is inside. When the swelling involves your entire body, misery spreads throughout. Walking on water balloons is the only way I can describe the sensation. Of course when I go to the doctor on Monday, the swelling will be gone.

Saturday, July 7, 2012

Remembering a GOOD time in my life

You know how you click around on the internet and it leads you to other clicks and that leads you to other clicks, etc? I found an old friend here I looked for years ago, but never found. Thought so highly of her in college even though she was only there a short time. I admired her. She was strong. She was a beautiful person. Believed in herself. Believed in others. Gave you her word and followed through. I never forgot Pamela Shoemaker. She had a big impact on me. I found her online again. What an impressive life she has lived. She is still the strong, beautiful person I remember her to be. There were many times I wish I could have been like her. During that time in my life, my mother was very sick. I was over 700 miles away going to school, feeling guilty knowing she needed me at home. My family never failed to remind me how selfish I was for going to school instead of taking care of her during that difficult time. I think that is why I admired Pamela so much. She had the freedom to do what she wanted to do and the strength to do it.

I found a couple of photos from that time period and wanted to save them here. Those were days of laughter, encouragement, and hope. I smile when I look at the friends who were in my life. I miss them terribly. Am I fighting so hard to save every nickel and dime to move back to Wilmore because I hope to have that kind of life again? Deep down, maybe. Will I get it? Who knows. All I know is here I am alone in the world. Here I am trapped in four walls suffering from an illness that is compounded from my surroundings. Here I am constantly bullied because I am an easy target from walking so slowly with a cane, easy target for crime, which is rampant. Here I have no hope, see one person only a couple of times a week, and turn on the tv just to have human contact and no one should live like this. There are no guarantees in life no matter where you go, but I deserve a chance to find out, to walk outside my door and feel safe, to walk down to the grocery store, or walk to the college and participate in activities as an alumnus.

And I ramble.....I just wanted to share that today I remembered a person who made a difference in my life many years ago because of her strength. 



Thursday, July 5, 2012

Sick from Flares

This has been a rough week. Heat made me sick. Fever of 102 degrees landed me in bed. Mouth ulcers. Both lupus flare results. Hate fevers. Hate joint swelling. Really hate mouth ulcers. This is another reason I'm moving. The heat and humidity in Dothan is horrible and lasts months, not a couple of weeks. The heat makes me so ill. Stress of the horrible people who live here, the heat illness, trapped inside. It is not a life. I'm due to live and I'm ready for a life. Time for an open door.


Next week I leave for Wilmore to search for a place to live. Lord, please open a door for me to find a place.

Sunday, July 1, 2012

Amazing When It Hits You

The heat has finally arrived in Dothan. Extreme heat with extreme humidity. Hard to breathe. I've been outside two days in a row and now am running a fever from exposure. Knew better. Heat Always makes me sick. Where the cold seems to affect most lupus sufferers, the extreme heat makes my illness worse. I am so very thankful to have air conditioning. Without it, I wouldn't be here. There is no way I could breathe. So for the next week, I'll only open the door to get the mail. 


The Lt. Dan Band is playing for Ft. Rucker's 4th celebration. This time I found out before the fact. Unfortunately, I STILL can't go. HEAT and Humidity. So tired of being trapped inside wishing I could hear this band. Gary Sinise is doing a great thing here. Illness has shut my life down in more ways than this. Sometimes I wonder if it is worth it to get up the next day. 


I was listening to a friend talk on the phone the other day. She was talking about her job, stress, and her family. It never hit me hard until then that I am alone in the world. I knew I was alone, my family all dead, I had to deal with every problem that occurred by myself, but I just did it and went on. But I realized how much I missed out on because I was alone in the world. There is no one to say I love you, to hug, to encourage, to care for....I can literally hear myself breathing because I am so alone. It was overwhelming. 


There are many reasons why I want to move to Wilmore and am going to search for a place to live. I can't bear the stress of being bullied, living in crime and fear all of the time, being trapped inside 24/7 afraid to even walk outside my door, the heat making my condition worse (at least 8 months out of the year), and the list goes on. I want a chance to find friends, make my own  chosen family, even find a church that has to be different than the ones here. I just want a chance, a change of life, the opportunity to open my door and take a walk without the fear of someone attacking me, sit on a bench underneath a tree, volunteer when I might actually be needed again.  I'm alone in the world and I don't want to be anymore. 


There are obstacles.....finding a place in Wilmore. Money  for a moving company. I still have faith and no matter what people do or say, that faith is strong. I know doors will open. 


The heat in this room is overwhelming so I'm ending this post. Have to find a fan quick!