Tuesday, January 29, 2013

Asking for Prayers - Near Dothan, AL

This is located near Dothan, AL -  the place where I lived. The crime in that area is unbelievable now. Not only was there a shooting last night, but today a man shot a school bus driver and kidnapped a child. PLEASE send prayers a good thoughts up for this child, driver and the families going through this nightmare!


Monday, January 28, 2013

Valentine's Day, Kevin Spacey and The Old Vic, and MRI'S

What a combination! Instead of writing, I should be feeding the cats and taking out the trash. But I feel like writing. My jumbled thoughts need to get out before this day ends and if I don't do it now, I won't do it at all. 

The MRI was an experience. It was located at a very small Ambulatory Center/Emergency Room in Nicholasville, KY. Once registered, I was taken down the hall and out the door to a trailer where I stood on a platform and raised up to a level where a door was opened. Inside I sat down and gave the exact information I already gave to the lady at the front desk this morning (and Friday afternoon on the phone when I pre-registered). Seems the medical field can't seem to skip repeating itself. 

The MRI tube was basic. Just lay down on the table and squeeze into the tube after you put in ear plugs. The ear plugs really don't help. I had an MRI done in Birmingham, AL several years ago where they put on headphones and piped in music. Now THAT helped! After twenty minutes of just laying there squished in the tube, and the last ten being jostled to and fro as if I were in a blender, it was time to be squeezed out like toothpaste in a tube! It felt like I was caught between the blender and the tube! 

Of course, techs don't realize when you've been horizontal for awhile that you never sit straight up immediately. I told him I HAD to sit for awhile or fall on the floor from dizziness. Besides my back was in extreme pain from laying on that horrible table. Thus the reason I was in there in the first place! 

His humanity returned and he sat me down in the comfortable chair as he finished his paper work. I chose my words carefully as I planted thoughts of "Be kind to those who cross your path. They are here because of extreme pain." Hopefully some of it stuck. He was much slower and more gentle by the time he walked me back to the front of the building.

Of course now we wait for the results. If they don't see something after all this pain, well, they're blind! I haven't been able to stand, lay down or sit for long periods of time today because of the intense pain. And if the numbness in both legs and feet can be reversed, I'm all for it! I can't imagine being able to feel my feet again! To be able to walk again and feel the ground under my feet!! Hope!

I ran across a post where Kevin Spacey mentioned something about Valentine's Day at the Old Vic. I follow his posts on Facebook. Normally it is so nice to see his photo and posts pop up. But quite frankly, I hate Valentine's day. Always have. It is the one day out of the year where you are reminded of having no one who loves you if you're alone. I have honestly never received a Valentine from a man in my entire life. Sad, isn't it? I have never been in a relationship, dated anyone, etc. during Valentine's Day. Just fell that way in life. And now when I spend 95% of my life alone, that day just makes me want to crawl in bed and pull the covers over my head. 

If you have someone, that's great. If you have a loving, kind, happy family and life, I'm so happy for you. Enjoy it! I just don't pretend to like Valentine's Day. I don't think anything on this earth would ever change my mind about the day at this point in my life. Not a challenge, just a fact.

And with that thought I will go feed the cats who have now turned their backs on me wondering why I haven't paid attention to them already. Then hopefully the pain medication I have to take every night will ease the extreme pain that has set in from the rain, the barometric pressure change, and the MRI table that became part of my back this morning.

Still holding out for hope that there is a reversal of neuropathy!    

Sunday, January 27, 2013

A Cheering Section

Everyone needs someone to cheer them on in life. Someone to believe in them. Someone to know no matter what they choose to do, they will succeed. Everyone needs someone to say, "You're such a great artist," or "You're such a great writer," or "You have such a heart of gold." Everyone needs a word of encouragement every day of their life. Those words fuel you on like gas in a car. They keep you going like food in your body. Without encouragement, you search the vaults of your memory just trying to remember words once given to you just to point you in the right direction. 

Just imagine. What would life be without someone saying something encouraging about something you did during the day? What would it be like if you went through an entire week without someone saying they love you or giving you a hug? You could only search so far into your memory to gratify that deep need for encouragement. 

My brother was my cheerleader. Even though he was my biggest teaser as well, he encouraged me when I worked by butt off to put myself through college. My family didn't have the funds to pay for school. Not even help with the necessities of clothing or even the smallest costs of doing laundry. I worked from the time I was 15 yrs. old contributing to the household and setting aside some money in hopes to go to college. My first two years I attended a local college while I worked a full time job at night in a sewing factory. Even though I was dead tired, I went to college. When I transferred to KY to finish my four year degree, it was the hardest yet greatest time of my life. 

And my brother was there cheering me on. No matter what negative remarks my mother had to say, no matter what doubts my father had, my brother pushed me on to finish. 

When I was teaching, I encountered a very bitter, jealous teacher. She made life a living hell for me. One weekend when I decided to go home, I was in tears. He had picked me up for the weekend. When I had told him what had occurred that week, he suddenly turned the car around. 

"Where are you going?" I said surprised. 

"I'm taking care of this situation right now!" he said taking charge. 

I talked him out of it and made him stop the car. It was that moment I knew just how much he cared. He was not going to let anyone hurt his little sister no matter how much she had grown over the years. We drove home with tears in our eyes never to speak of the incident again. 

When he was diagnosed with cancer when he was 45, I was devastated. I quit my teaching job and took a 9-5, moved him in with me and my dad and took care of him. His treatments were brutal and I screamed at God wanting to know why He was doing this to my only brother. He only went into the hospital to have a kidney stone removed. Never did I dream he would come out with cancer. 

When he died ten months later, I lost a part of my soul. I still do not understand why he had to die when he was 46 years old. I felt so abandoned. He was my brother, my cheerleader, and in later years, my friend. I was 13 years younger than him and was the pest for so many years, but had grown into his sister after leaving high school. God just didn't give us enough time together. 

I do not hear words of encouragement anymore. No hugs. No I love you's. Being a disabled "alone in the world" person is extremely hard. Most days I don't see another person. 

What I wouldn't give to hear words of encouragement from him once more. 


Saturday, January 26, 2013

Sleep and Other Heartfelt Thoughts

I haven't been able to sleep through the night for several days now. For anyone suffering with systemic lupus, you know how badly this affects lupus flares. With this disease, doctors recommend you get 8-10 hours of sleep a night. Otherwise you'll be living with flares for awhile. 

My flares have set in. The extreme fatigue has enveloped me like an unwelcomed guest. It has penetrated every joint causing swelling, extreme pain, and fevers. The extreme cold temps of 10 degrees have not helped. No matter what I do to try to stay warm, nothing seems to help. There is a draft in each room and I cannot find the wind coming in. I've sealed the windows with clear covering, but the wind finds its way inside. At night I curl up with an electric blanket which seems to ease the pain, but sleep eludes me. 

When I checked my meds at 3:00 this morning, I realized one that helps with the pain and to help me sleep looked different. With Sandy being here last week and and the new prescription refill coming in, it didn't register with me the med looked different. I think they gave me the wrong pills. I checked the old bottle, took out the original pills and they did look different. At 3:00 this morning, I took the original pills and slept for a few hours. Seems like I found one of the problems with sleep. 

Amazing. Normally I would check every prescription as it came in to make sure all the meds were correct, but for the first time in a long time, I was busy and did not. It made all the difference in the world. On Monday after I return from the MRI of my spine, I will call the pharmacy and report the issue

Make sure you always check the meds!

In the mean time, I will now have to suffer through a lupus flare caused by lack of sleep from several days. I have no one to blame but myself. You would think after 17 years with this disease I could take better care of myself. But after so much time has passed, it has become more difficult to function daily. Things so many people take for granted like standing in the shower, washing dishes, getting dressed, are a chore to me. I may not be able to accomplish any of those things some days. On days when I can, I rejoice! It is a good day and the good days are few and far between. 

I've reached the point if I do anything one day like go shopping, eat out with a friend or spend time with them, I am wiped out the next day and have to rest. Most people do not understand this. Quite frankly I'm tired of trying to explain it to people. It is a waste of breath to me. Unless you live this day after day, you won't understand what it feels like. If I know I have to go to an appointment on Monday, I spend Sunday limiting the amount of activities I do around the house. In other words, I rest. Then on Tuesday I am so exhausted from Monday, I rest. My body will not function any other way. 

Today I was treated to lunch for my birthday from two friends. I stopped by the grocery store and spent a few hours watching a movie with one of those friends. I'm propping myself up to write this post. Tomorrow I will be able to feed the kitties and myself and rest. 

Doesn't sound much like a life I know, but for some reason God has a purpose for my life. I've often wondered why He left me here after my mom, dad and only brother died. I felt so abandoned. Still do at times. I wondered why He never blessed me with a love and family of my own. Instead I was left to suffer the loss of my own health, the life I fought so hard to educate, work toward, only to lose to a disease that has caused more damage than anyone reading this post could ever imagine. It wiped out every dime I had ever saved. It put me in a position that I now have to choose to buy food, turn on the heat, or pay for medication. And the worst part of all is I have to do this all by myself. 

I think the worst thing in this world is when no one wants you. 

Systemic lupus is different for each person. Just like life, we're all at different mile markers on a road. One person cannot compare their experience to another. But we can care and love.          

Wednesday, January 23, 2013

Cold and Lupus Flares

Was a bad lupus flare kinda night last night. Had a very high temp, swollen joints, and was in so much pain. Didn't sleep at all. Even under an electric blanket while sleeping on a heated mattress pad, I just couldn't sleep with the cold air circulating in this cold, cold apartment. Block walls just seem to retain the cold more. Have to squeeze money tightly when you're on a fixed income so heat is a precious commodity. I finally fell asleep at 5:00 a.m. this morning. Slept about two hours. 

Another cold night ahead. Temp will be 10 degrees. Struggled with the outside kitty again. He stayed in for fifteen minutes. Refused any other amount of time. Just use to being outside. I made sure there was plenty of warm blankets inside the box. This morning he was fine. Wish I could say the same. 

Heading to bed early tonight. Curling up with my Kindle to read a GOOD book (now that I can actually see the words!!). I've missed reading so much. 

Never thought I'd say this, but where is Spring?!  

Tuesday, January 22, 2013

Here we go again!

Saw a new doctor today. He was great! Now have my general practitioner in place. He was concerned with the fact neuropathy has robbed feeling from my knees down. Also concerned with the severe pain in my back and how my thigh down goes numb just from standing. Sending me for an MRI soon to take a look at the spinal stenosis and searching for what can be done to rectify the problems. Hallelujah!

They were so nice there. His nurse "welcomed me to the family." Now that's a good place. Two more in February. Like I said before, with an illness like systemic lupus, you're constantly going to to doctors, taking meds, and suffering from "new discoveries." 

Monday, January 21, 2013


It has been a wonderful birthday "week" with Sandy here. I just wish I could keep her. She's been more than a friend to me. She's my "sister." We've known each other more than 34 years. That's saying a lot for a best friend. No matter how many miles separate us, she will always be my best friend. I hope she knows this. People spend a lifetime trying to find a friend like her. I'm so thankful for Sandy. She was the best birthday gift I ever received. 

We did a lot of roaming around while she was here. I'd stop and wheeze a long the way, but it was worth it. Did a walking tour (our own) of Keeneland, went to KY Horse park, petted Funny Cide (KY Derby winner), went to Shaker Village, hit a few thrift stores. Unfortunately, I had two doctor visits in between. It was really cold outside and I learned my lungs cannot take the cold. 

Tonight the temp is going to be 9 degrees. I've tried desperately to lure the "porch" kitty inside, but he refuses. So I've put out a larger box with a fleece blanket. Hoping he will be okay. We're predicting snow at the end of the week. Just amazing to me. Was 50 degrees Saturday, but the cold wind made it feel like 30. I have sore tonsils again, but have a doctor's appointment on Tuesday. Do they ever end?

Nope. Cardiologist on Feb. 11th and then eye doctor on Feb. 15th. Since I've been put back on Plaquenil, I have to see an eye doctor twice a year. The stuff deposits on the back of the retina. They won't give prescriptions without the exams. Unfortunately, when you have systemic lupus as long as I have, (going on 18 years) your doctors increase. So do the meds. The illness is different for each person. One person may be able to hold down a full time job while the next person may not be able to walk a block down the road much less stand in the shower. One may be able to get dressed in the morning not giving it any thought while the other may take two hours to get out of bed, walk across the room, stand without extreme pain, get dressed without extreme exhaustion. One may be able to live a more normal life while going different places each day while the other may not venture out the door for a full week. I am the "other." The damage I've sustained over the years has left me unable to stand in the shower most days, unable to get dressed for two hours or not at all, unable to get out of bed, stand without extreme pain, live without extreme exhaustion, be unable to venture out the door for a week. Each person is different. 
And now with the cold setting in, it has affected me greatly. I find it harder to walk, function, think. It was harder to do those things on warmer days. Now I cannot function. 

Ping pong thoughts. I start with one thought and flip back to another. I'm thankful to have passed another milestone. I also was given a birthday dinner from a dear friend here in Wilmore which included a birthday cake, something I've not had since 1996. Meant the world to me! 

The one thing I'd change though would be electronic communication. It is all well and good to send birthday wishes via Facebook. I miss birthday cards! Had it not been for Sandy and Joanne, I would not have received a birthday card this year. I Do love them. I think Facebook is robbing way too many people of birthday cards, a treasure that cannot be replaced. If you have a friend with a birthday coming up, SEND THEM A CARD! It will mean so much more to them than a facebook post. They will cherish the card more. 

I hear Rascal singing in the background. He thinks he's going outside to forage for grass. However, it is far too cold today. I'm tired and so is he. We're turning in early and hoping this sore throat will go away.       

Sunday, January 20, 2013

Birthday Today

Today is my birthday. I made it to age 52. Amazing. I had to think about the number. My mind is growing so fuzzy thanks to lupus and the tons of meds I have to take. Doctors truly thought I'd be gone a long time ago. What does God have left for me to do? 

The day has started off quietly. No balloons or presents. Sandy gave me two birthday cards, of which I'm very thankful to have them. They were the only birthday cards I received this year. I'm thankful she is here. What greater birthday gift to have received? She will be going home tomorrow though. Part of me wants to go with her. I dread going back to the isolation once again. 

I've been trying to remember the last time I had a birthday cake. I truly cannot remember when it was. It has been such a long time. If I wagered a guess, it would be 1996 when I was still working at the church. Sad to remember such a thing. 

While most birthdays are a celebration to most, they are melancholy to me. Always tinged with the memory of my mother's loss. Her death, just two days before my 24th birthday, brings memories of spending that birthday in the funeral home for her viewing. No matter how hard I've tried to bury it, the memory comes back. 

Deep in the cold winter of January, how nice it would be to see flowers. Just a touch of spring. Or have a relief of my financial worry right now. That would be an amazing gift. 

I'm still having chest/breathing problems even though I've gone back on lupus meds. They're wreaking havoc on my system. The re-adjustment period. Just hoping these meds will somehow fix the problems of my lung issues. I want to be able to walk again, gain momentum in building some strength back. I want to be able to have some freedom in the next year, the 52nd of my life, and not be trapped behind four walls. 

Here's to hope, faith, and brighter tomorrows.