Monthly Archives: February 2007

Lupus Awareness

[livevideo id=BEC49F8E2E6047D49E050476BA722B79]

This is a video I made on Live Video.

The blizzard weather is not good for my achy body!

Yesterday I just didn’t feel like posting a journal entry. I was very achy all over.

We were hit with blizzard weather here and my husband got our car stuck Saturday night. When he finally came home he had to dig his way in through the hill of snow out in front on our door. He informed me the car was stuck in the road just a short way from our house and he needed me to drive while he pushed. I said no way at first. I had been hurting all day and I worried about being pregnant going out in that weather.

I waited around for about 30 minutes, and he still hadn’t returned home. I decided to go help. Walking down there in the knee-high snow was no joke! He was right though he was not far from our house. It took us an hour to get the car moved about 5-7 feet. We parked it and walked the rest home.

So naturally I knew the next morning was going to be hell for me.

The sore in my nose doesn’t seem to want to heal! It is smaller though then what it was.

Today I am tired. (When am I not tired huh?) I didn’t sleep well last night. I tossed and turned all damn night. My hips hurt so bad I got out of bed to take a shower at 3:30 am. That helped for a little while. The rest of the morning I was on the couch. I got another two hours sleep while there.

I am working on an entry concerning FMS that will be posted this evening (If I feel up to being at the computer that is.)

Until next time…

So much I want to do with the Internet!!

crazy-normal.jpg

I have been busy on the computer today. I’ve added a few more pages to this journal web page and I hope people check them out. I have a FMS Awareness page, a Lupus Awareness page, and a cancer fact page. I’ve added some links to my BLOG roll concerning autoimmune diseases, FMS, and Lupus. I finally got Devastation: First Time He Cried up here for folks to read. I even got some more videos put up at the del.icio.us link.

I’ve been exhausted all day long. My body aches and we have blizzard weather now! A few days ago it was up to 40 F…very strange that now we got snow out the yin-yang! LOL

I want to start making my own videos to put onto the Live Video page, but I first have to break down and purchase the equipment to do so. THEN I have to figure out how to do videos of my own. I want to have more awareness videos available there for Lupus, and FMS. The page is mostly political right now, but I want to add more health items to it very soon. It has strong language in some spots, graphic images, and some of the videos are for 18+. You can check it out here at FallenLiberty

A few weeks ago my daughter ran a fever that was not explained. It lasted one day but went away. Again tonight she is running another fever and has a bad cough. She complains of her legs hurting quite a bit and I’m not sure what to do. I took her to the doctor to see what they thought and they only did an X-ray on her. That came back fine. I think I will call again Monday and talk with her doctor about her running a fever again so soon.

I worry that, if I do have Lupus, and it is unknown by the ANA test result right now for me, could that be her problem with the fevers? I know that if your mother has Lupus you are very likely to have it yourself. I’ve not been diagnosed with Lupus but I really think that is my problem. I am not so sure about the Fibromyalgia diagnosis given to me. Maybe I am worrying too much though about my daughters fever.

There is so much I want to do on the Internet that my mind is just streaming with ideas. I need to meditate for a short while before I attempt going to bed!

I am very tired though, so I’m going to lie down on my couch, and attempt to clear my head of the ideas floating around.

Thanks for stopping by. Until next time…

Devastation: First Time He Cried

There comes a time in everyone’s life when they finally realize life will eventually come to an end. Growing up in my small, family orientated neighborhood, I never stopped to think that life ends someday. As a child, I never really had to face losing those around me. I focused my energy on riding bikes with neighborhood children. I climbed trees with the neighbor kids. I was so consumed with just playing in my happy little world. You remember those days? It seems like yesterday.

Our imaginations ran wild on that concrete porch that had a drop off of maybe just a foot. “Geranimo!” off we’d jump over and over. We were super heroes, and we were magic fairies. A smile crosses my face when I look back and remember all the childhood games I’d play. All the energy I had to invest in one day. Never once thinking that one day is all you may have.

Yeah sure, I lost family over my childhood years, but that didn’t stop me from thinking my parents were an exception. Maybe it was too painful to think that my parents would be gone one day. I’m not sure why the thought never crossed my mind. I actually believed my parents were going to be around forever.

The smile fades slowly though when the day comes back to haunt me. I’ll never forget. The day I realized, that my parents were not going to be around forever. I had just pulled in from getting out of school. My dad was standing outside the kitchen door.

“You want to go for a drive?” my dad said as he dangled the keys towards me. “Yeah, you need to go somewhere?” I didn’t know this car ride would be the ride that crashed my world.

It was a gray Corsica that had four doors. It wasn’t the cleanest on the inside, but it was a dependable car. The hood of the car needs a paint job; it was chipping off in different places. Dad never cared what the cars looked like we owned, as long as they could get to Kentucky and back. He was a simple man.

I took him to run some errands. He wanted to pick up some cigarettes for mom and we had needed milk. We went to the bakery that wasn’t too far from home.

It was a mild summer day. The sun was shining and the breeze came just at the right moments to cool you off. It was an ordinary day, nothing unusual, so I had thought.

Returning home a song I loved so much was on. Dad loved the song as well; he introduced it to me years before while we were traveling to Kentucky to visit family.

“Down in the boondocks, down in the boondocks…” singing along with the radio as I turn on CCD. My dad reaches from the passengers’ side to turn the radio off. “What are you doing? That was a good oldies tune.” I was a little upset at him for turning it off. I went to turn it back on but he covered the power button. When we reached the stop sign, I remember looking over at him. His elbow rested on the door with his right hand above his eyes with a weary look upon his face.

“Dad, what’s wrong?” He didn’t want to answer me. He just stared out the window. “Go on, people are behind you and they want to get going.” I pulled away from that stop sign very slowly as I asked again, “What’s wrong?”

He had known for sometime that I smoked behind his back. He knew he couldn’t stop me so he never really gave me a lot of grief about it. He never let me smoke in front of him ever though. When he would find my hidden stash, he’d throw them out.

“Your mom and I didn’t want to say anything until we knew for sure.” I was surprised a little, and wondered what he was talking about. “Did you bring your cigarettes with you?” I glanced over real quick at him but I didn’t say a word. He reached into my purse; it funny the things you remember. I will never forget that purse. It was black suede patchwork and it was small with just two compartments in it. He pulled out a pack of Marlboro Reds from there. I was scared and thought I was in trouble. I wasn’t in the kind of trouble I thought though, and I wish today that I had been.

“You want a cigarette?” He asked as if it was so natural for him to ask me that. I nodded simply because I knew him asking me that and what he had to tell me would make me need one. I remember seeing him taking it out of the pack and lighting it for me, and then handing it over to me saying, “You really need to throw these things away.”

I took the cigarette in my right hand and switched it over to my left. “Until you knew what?” Still he acted as if he didn’t really want to tell me. This hesitation the second time and him letting me smoke in front of him let me know that whatever he was about to tell me was going to be some pretty bad news to hear. I started getting anxious as we traveled down the road towards the house.

“You know I’ve not felt good for a while and you know I went to get some tests done, well…” there was that hesitation again that made me be concerned so much, “I was told today what the results were.”

I started thinking about when dad first fell ill, and it wasn’t usual for my dad to become sick enough to see a doctor. He never went to a doctor for as long as I can remember. The only time that is an exception is the time he was using a chainsaw cutting down a very small house that was next door; he nearly chopped his toe off that day. Mom was so frantic

I remember him telling her, “Just get a pan of water for me.” She got the water meanwhile yelling, “You need to go to the emergency room D. Let me take you.” He was so against seeing doctors that he argued with mom for a quite a while before she actually convinced him to go. He was a stubborn man. It was good for him that he went; they were able to save his big toe. So, I knew deep down that having the tests done were a matter of life and death for him.
I stayed silent as tears filled my eyes. I just kept driving and when we reached our turn he told me to continue going straight. We reached another stop sign and it finally came out. I heard such sadness in his voice. This was the hardest thing he had ever told me. I still cry thinking of that day, and the days that came before that day. I cry even harder when I think of the days that followed that day.

“I have been diagnosed with cancer.” My tears just seemed to gush at the words I heard. I felt my heart in my throat. I was speechless. “Your mom knows. She went with me today. I thought we’d drive around for a while so we could talk. It is OK to cry.”

Through my weeping, I could only ask one question. “Are you going to die dad?” I’m not sure why I asked that question because I already knew the answer. The only sound in the car was my crying.

“Come on, let’s drive up and park in that empty gravel lot.” So, that is what I did. It was only a few houses down from that stop sign. I drove so slow trying to stay focused on getting to that lot. It wasn’t easy at all with the tears just streaming out and the thoughts that filled my head. When we got there, I stopped the car and my face collapsed into the palm of my hands. I was still holding the brake with my right foot and dad slid the car into park for me.

“It doesn’t look good for me. The doctor took X-rays when I first became ill. The other tests followed when the first test came back as bad news. The others came back the same.” I wiped my face with my two palms and looked over at him. It was the first time we made eye contact during the whole episode. He had tears in his eyes and that made me cry even harder. I never knew I could cry so hard.

“They found some tumors on my lungs that are too close to my heart to attempt surgery. They also found a tumor on my brain. That isn’t all…” he paused for only a second. I didn’t want to hear anymore! “This is not happening! Not to me, not my dad! You are too great of a dad to be in this situation! Please, tell me you’re not going to die!!!” He reached over with his arm and I know it was uncomfortable to do, but he hugged me.

My dad was never really good at showing his love in this kind of way. He never really had to though. I knew my entire childhood that he loved me very much. Never once did I ever doubt that.

“Listen, I want to tell you all of it.” He held me while I cried and he finished. “They found tumors in my prostate and I have tumors on my liver. I am going to die. I need you to be strong now for your mom. She is going to need it.” With my head tucked under his arm, I felt him wiping tears from his own face as he paused again before finishing. This would be the first time I had ever witnessed my dad crying.

“The doctor gave me three to six months to live even with chemotherapy treatments.” I then raised myself out from under his arms and I hugged him so tightly. I held onto him as I cried. “I love you so much dad. How am I going to live with you gone?” He just put his hand on the back of my head and rubbed it as if I were an infant child again. That is exactly how I felt, like an infant child. I felt so helpless and so alone. I still feel very much alone.

The thoughts that raced through my mind then still come to me today. I was having flashbacks of how things were when I was just a little girl. The things he had done for me. The talks we had, the jokes we would tell each other, and the writings I’d share with him. I remember one particular memory in those moments. It was when dad had finally let me get my own dog.

It is strange the things you remember when crisis is placed into your lap. It is strange how gullible a child can be, and how vulnerable a teenager can be, but mostly how crushed a grown woman is.

(This is a true story of my life and it has been published- this is the shortened version)

I am not sure I buy the Fibromyalgia diagnosis…

Symptoms I have that match Fibromyalgia from Mayo Clinic page

· Fatigue
· Irritable bowel syndrome
· Headaches
· Depression
· Anxiety
· Difficulty concentrating
· Dry skin
· Painful menstrual periods (Doesn’t every woman? LOL)

Symptoms of Fibromyalgia that I don’t have listed at the Mayo Clinic page

· Numbness or tingling in hands and feet
· Chest pain
· Dry mouth
· Dizziness
· Heightened sensitivity- being sensitive to odors, noises, bright lights and touch
· Facial pain
· Widespread pain (I don’t match most of the pressure points)

Symptoms I have that match SLE (Lupus) listed at the Mayo Clinic page

· Arthritis- Joint pain
· Arthritis- Joint stiffness
· Facial rash (Waiting for dermatology to give a definite answer for my rash)
· Headaches
· Shortness of breath
· Heart palpitations
· Mucosal ulcers- Mouth and nose sores (More nose sores then mouth for me)
· Fatigue
· Vision problems (I have a hole in my retina)
· Digestive problems- abdominal pain, weight loss
· Hair loss
· Depression

Symptoms that match SLE (Lupus) that I don’t have or haven’t been checked for
(Some of these are questionable because I may have them but not match them exactly)

· Raynaud’s phenomenon- fingers, toes, nose and ears turn pale and numb in cold temperature (My fingertips turn red, almost purple in cold exposure and tingle)
· Swelling- swollen glands, swelling in legs, around the ears and eyes
· Fever- higher than 100 F (I have run low grade fevers from time to time, usually no higher that 99 F)
· Blood vessel disorders- inflamed blood vessels (Never been checked for that)
· Lung problems- inflammation of the chest cavity lining (Never had my lungs checked)
· Heart problems- Pericarditis, which occurs when the pericardium becomes inflamed (Never have had my heart checked either)
· Kidney problems- lupus can cause numerous types of glomerulonephritis, a condition that affects the kidneys’ ability to filter toxins, leading to kidney failure. (Have had kidney infections but never been checked for glomerulonephritis)
· Seizures, or stroke

Symptoms I have not listed with the Mayo Clinic page regarding SLE (Lupus)

· Anemia- low red blood cells
· Loss of appetite (Usually have to force myself to eat)
· Aching feet at the joints and ankle
· Hives from time to time
· Nausea from time to time

I am not certain I buy the Fibromyalgia diagnosis. Now the problem is I have had the rheumatologist tell me that most likely I do not have SLE (Lupus) but he would not rule it out completely because newer symptoms could show up to prove that my problem is SLE (Lupus).

I am wondering how can he say I have fibromyalgia with such a small amount of symptoms matching that disease?