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Saturday, February 26, 2011

Hospital Stay :o(

I suppose the title is a dead giveaway to say the least. I did land in the hospital on Thursday night, my husband's birthday. It all started like this . . .

I fainted. Four times. Out like a light. I could hear my husband's voice but could not respond. After the fourth floor hit my husband insisted on taking me to the local emergency room . . .

We arrived after 20 minutes of driving in near zero visibility snow. I was ushered into a room quickly and hooked up to an IV. Now the IV was a problem for both nurses and to say I nearly had a blackout from the needle being put in and out, yikes!

In the next room was our own personal episode of COPS. Four policemen were guarding a drunk young man who was being very abusive. I tried to relax between yells of "I didn't do nothin'" and "Get off me pigs". Lovely . . .

I was admitted. I was taken to a cold, uninviting room. I was introduced to a few people then told to try and sleep. That would have been okay except across from my room was a patient that was having a definite problem. Groaning and yelling came wafting through the air reminding me of Sloth from the Goonies. . .

After a few hours of bad sleep I was wisked off to testing. CT scan, Echocardiogram, chest xray and ultrasound of my heart and carotid arteries. I was still very cold . . .

The food was terrible. I had to ring to go to the bathroom (I did understand this as a safety measure). After all that the tests came back negative (yay). . .

With all of this I asked myself, why couldn't I go home and do any other tests on an outpatient basis? I asked for the nurse and he paged the doctor who came to see me. I convinced him, as a medical professional (retired, medically) myself that I could monitor my status, my husband would be home and I could do anything else outpatient. He was initially reluctant but finally said yes. . .

I came home and felt fine. This is Saturday and I still feel fine. I have reasoned that since all my tests were negative something else must have happened. Here are the facts: I had not eaten in a long time, it was 1:30am, I had not consumed adequate liquids that day, there was an adrenaline rush from seeing the opening of the musical (my husband was the pit conductor) and I tend to be lightheaded easily due to medications. I believe it was this combination of factors that lead to my fainting. . . .

I am going to follow up with the doctor, I did buy a blood pressure cuff and I have consciously tried to drink more water today. . .

I did come away from all of this with one thought: I am going to take a little bit more time for myself. I do not want to go back to that room again, ever!

Wednesday, February 23, 2011

Why I Isolate . . .

It has been hinted at by family that I may be spending too much time alone. "It isn't healthy" they say "you will just dwell on yourself" or "it will make the pain seem worse". I listen, trying not to react, roll my eyes or say something that will be misconstrued or offend anyone. So I pondered. Am I isolating? Why, yes I am.

Why I isolate is partly self preservation, partly sanity driven and mostly comforting. What I mean by all this is I want to isolate. Few people understand what I am dealing with, the constant pain, fatigue, and aches plus other varying maladies. Add to that questions regarding why I can go to the grocery store but I cannot work (are you kidding), do I really need the cane (only if I don't want to fall over) and is CFS/fibromyalgia real cause someone told me it isn't (well if it isn't someone should come and tell my body).

I isolate to keep my sanity by surrounding myself with familiarity, warmth, smells and noise levels that I can tolerate plus no one with questioning looks when I use my handicapped placard. People do not understand that odors, noises and other environmental factors can increase my discomfort. Large gatherings of people can stress me out. Sometimes just the thought of certain events makes me ill.

I suppose it is possible that some will think I am developing a phobia and that I am scared to leave my home. Nonsense. I can leave but on my terms if possible. If I am allowed to plan it increases the odds that the outing will be successful or at least tolerable.

I am trying to get better. That is always my goal but I also have to live in this body so some level of acceptance is important as well. Maybe I will not have to isolate as much someday but, for now, it is necessary. Necessary for my sanity. Necessary for my body. Necessary for me.

Monday, February 21, 2011

Stressful times

This is a particularly stressful time for me. Ignore my husband's crazy job as a college band director, my worries as a mom and the financial issues of being disabled. To increase my pain and fatigue is my mother's health.

Mom has been declining for awhile. Her heart is slowly giving out. She is losing weight and needs oxygen 24 hours a day. She is not eating very well. Mom now lives with my sister who is an RN. I am facing the fact that I will soon be losing my mom, my biggest cheerleader and my role model. It hurts in more ways than one. The pain in my heart is accompanied by pain in my body and increasing fatigue.

How do you deal with this impending loss? I have a few suggestions that are working for me:

1. Make sure I take my daily vitamin supplement, watch my diet and get adequate sleep.

2. Try and do some form of exercise daily even if it is only a few chair moves or a couple of bicep curls.

3. Read from my Bible daily. Nothing calms like God's inspired Word.

4. Spend time with my mom. I have asked so many questions about relatives, her life and my deceased father's life. Things I have always wanted to know.

5. Take my sister out to lunch to give her some down time and a chance to talk.

6. Don't forget to take time to spend with my husband.

7. Turn off the tv and sit in silence. Let the emotions wash over me and give them the forefront.

8. Try and keep the basics of the house in order. Cook simple meals. Don't let the laundry get too deep.

9. Eat chocolate.

10. Listen to my IPOD.

In addition, make sure my prescriptions are filled and any other items I regularly use are available in case of a flare.

This is my personal list I am sharing with you. This list may and probably will not work for your personal situation and stress. During times of stress we need to try and keep some normalcy and also some time to honestly deal with the grieving that has already started.

The reality is I am soon going to lose mom. It hurts, it stinks and it is normal. I am going to embrace the moments as they come. That works for me.

Friday, February 18, 2011

Facebook Craziness!

I am stressed! My fibro is flaring, flaring, flaring!!!!!! My mother's health is declining and other family issues are driving me crazy. In addition, lately facebook has not been the safe haven it has been for me.Facebook friend turns on facebook friend. One bans the other and this resulted in outright yelling back and forth. It was pathetic and hurtful to witness.

Why do people turn on each other so easily? Is it because it does not involve real person to person contact? I do not understand the anger that can rear it's ugly head so quickly. It is almost frightening to watch, like a pack of wolves tearing prey to pieces. Maybe some will say that I am being overly dramatic but I do not think so. This seems to be especially true for the support sites. Fibromyalgia is such a devastating condition that stressors can trigger many negative emotions. These emotions and resulting anger can erupt easily, especially if the person feels threatened. We all need a support system whether it is physical family or an on-line family. Any perceived betrayal can have swift consequences. In the end, who does it hurt? The entire fibromyalgia community! Unless those of us with fibro stick together we will never have the clout we need to for effective change.

I pray we can learn from these instances of anger and outbursts. If not, we will stay mired in a sea of doctors and others who doubt our illness. Sad.

Friday, February 11, 2011

Fibroland, a tour!

I am still in Fibroland, that wonderful place where all fibromites go when they are flaring. It is a journey that is never planned, never anticipated and never welcomed. I thought you might like a tour.

The entrance is surrounded with a fog that varies from just a mist to pea soup consistency. This makes it very difficult to navigate at times, not that it is easy to navigate in a flair anyway! The price of the ticket is very high. It is not mere currency. The cost is the sapping of your energy, the blurring of your mind, the pain surging throughout the body and the isolation that comes only with a chronic illness that is in an exacerbation phase.

Now you are through the gate and ready to see the layout of Fibroland. It is a bleak and desolate looking place. Oh, there are rides, but they have long lines and when you finally get to the ride itself it is often slow, fatiguing and exhausting.

When all that specialness is over with it is time to grab some refreshment. The menu consists of the following array of delightful items to choose from including: dizziness, IBS, migraines, spasms, muscle twitches and spastic bladder. For dessert you can sample from: headaches, morning stiffness, sleep disorders and vision disturbances.

On to the souvenir booths we find so many things to take home with us like: widespread all-over pain, fatigue, multiple chemical sensitivity, pelvic pain and depression.

The main problem is that by the time you have gotten over all of Fibroland, you are exhausted. You are ready to leave, but you can't. You can't until you find a way to get yourself to the first aid station. There you will find stress relief, massage, medications, and understanding. When you can find the station, then you will be able to leave Fibroland and never a moment too soon!

Thursday, February 10, 2011

Sorry for no new posts.

Hey everyone, I have been sick for two days and unable to post. Thought I would just quickly get on here and let you all know where I have been. Look for a post tomorrow.

Tuesday, February 8, 2011

Whine, whine, whine. Part II

Well I guess this is going to be part II today. I did not sleep soundly at all. I was slow to wake so I had to take a QUICK shower and fly out the door to my podiatrist's office. I spent 1 1/2 hours in that office, up on an elevated chair, constantly shifting to stay comfortable. If it wasn't my knee it was my back, neck, shoulders or that darn left foot. After consulting with the doctor and describing recent symptoms, he diagnosed me with tarsal-tunnel syndrome. Great, I thought to myself, another diagnosis to add to the ever growing list. Sigh. When does the list stop growing? The doctor and I went over my recent MRI and talked about options. Together we decided on physical therapy and a cortisone shot to a pocket of swelling on the lateral side of the foot near the nerve.

Next, I hobbled to my car and proceeded back to home where I would just make it in time for my hair appointment. I was only having it cut. I stopped having it colored months ago secondary to cost and fatigue from sitting in the chair so long. I also have cut it shorter due to the fatigue in my arms/shoulders when trying to use a blow dryer. On the positive side the chair used to wash my hair is ergonomic. Possibly due to the fact that my hair stylist has fibro? I made it through the appointment. Then . . .

Off to the chiropractor. Dr. Tim is my life line and a shoulder to lean on at times. He does e-stim, heat and a gentle adjustment. It helps. Now . . .

I am back home, ate a late dinner (a can of Slimfast, lol) and have been trying to catch up on some paperwork but my shoulders are killing me again.

I hate having fibro. I HATE it. It limits my life, isolates me at times and causes no small amount of pain. If pain were a food it would be the most disgusting thing ever. It would smell horrible and taste worse. Fibro is like that. It can be horrible and get even worse. I am so angry at times with people who say they think those of us with fibro are faking or lazy. I would love to have a day pain-free.

I want out of Fibroland. I do not like the rides, there are not enough bathrooms (for those of us with IBS), it is either too hot or too cold, too bright or too loud, always too something! The food is gluten free, fat free, low carb, lactose free, and taste free (at least to me). The cost, now the cost is way to high. You have heard of an arm and a leg? Well fibro costs you your life! I so want out.

Well, that is my rant for tonight. I have to be up early tomorrow to see yet another doctor. This doctor will go over my recent left knee MCL repair and discuss a timetable for my need for double knee replacements. Joy!

Saturday, February 5, 2011

Stormy and me

When I was about 10 I told my parents that all I wanted for Christmas was a horse. Just a horse mom and dad. We have a farm I pleaded, we have all kinds of grass! Impatiently I waited but December 25 came and went without the treasured equine. Another Christmas, birthday, Christmas came and went with no filly in sight. On my twelfth birthday my parents finally gave in and I was taken to a nearby farm to look at a few horses that were for sale. Finally, my dream was coming true . . .

We arrived at the farm, parked the car and met with a man in cowboy boots and hat. He sauntered up to us with a big bright grin. He gave us a tour that included his two handsome stallions, a few ponies and some brood mares. Finally we came to the enclosure where my future best friend was housed. Inside the pen were three horses. The large dapple and muscular gray gelding was named Joe. He strode around the corral, confident and sure-footed. Next was a blood bay gelding by the name of Chips. Chips was a 16 1/2 hand leggy horse with a big white stripe down his face. Unlike Joe, Chips was anything but graceful. His stumbling and clumsy gait almost made him comical in appearance. I watched the two geldings as they moved around the enclosure until my eye fell on the third horse. The little mare was standing in the corner of the corral, near the lean to watching the geldings. Her brown coat shown in the summer sun. Large eyes flashed with curiosity and intelligence. I was mesmerized. Shyly I asked Mr. Cowboy Boots what her name could be. Stormy he replied. He continued to explain to us that Stormy got her name because she was born on a dark, rainy night. I could not take my eyes off of Stormy, the geldings ceased to exist in my mind. Mr. Cowboy Boots talked and talked with my parents. Then came decision time. Stormy, I declared and $150 passed from my father's hand to the owner.

It was a few weeks before I could have Stormy due to the fact that she was only halter broken and needed to learn to tolerate a rider. After training I was allowed to come to the farm and learned all I needed to know to ride and care for Stormy. I could hardly wait for the big day! The day was approaching but I would be at school during the scheduled arrival time. Oh the day seemed to last forever.

I came running to the barn and stopped dead in my tracks. Here was my beautiful little mare lying on the grass with a fresh cut on her head. I could hardly stand to hear the story from Mr. Cowboy Boots on how Stormy had fought being loaded into the horse trailer. She fought then reared, her head slamming into the roof of the trailer. Finally, while dazed, she loaded and made the trip to our farm. My mother had called the vet who had come and gone. Nothing serious he told my mom but the vet cautioned us to keep an eye on her.

Tears welled up in my eyes as I opened the gate and gingerly approached my motionless little horse. Stormy lifted her head and looked in my direction then slowly dropped her head again to the soft green grass. The warmth of the sun enveloped me as I knelt down beside Stormy. I rolled over, put my head on her side and Stormy and I napped in the early September afternoon sun.

What seemed like a dream was broken by the sound of my mother calling me to dinner. I sat up and wiped the sleep from my eyes. Suddenly I was aware that a soft muzzle was on my shoulder. I looked over into Stormy's eyes and she gave a soft, low whinny and nudged me again with her nose. As I rose to go up to the house, Stormy rose to her feet and began to nibble on the lush grasses. I had a feeling then that all would be okay. From then on it would be Stormy and me, always.

Friday, February 4, 2011

I didn't shop!

I wanted to, that's for sure. I could just about feel the excitement, you know, the rush of buying. You hold the item, almost caress it as you pass the plastic. Just pass the plastic. Just give the nice cashier the plastic. Just do it . . .

I did not shop. I did not use the 15% off Kohl's coupon nor the Old Navy one either. I put away the $10 off $30 to Bath and Body Works as well as the $10 off $50 at J.C. Penny's. I threw the coupons away, as well as the fliers. I stopped at Walmart and came out with the item I went in for but nothing else. I shopped at the grocery store and bought exactly what was on my list. I just could not shop.

Why? I want to do more this year. I want to bless someone in 2011. In my previous post I outlined my goals according to my reading of the book "Radical". In a fibromyalgia fog I had almost forgotten my goals. It could have been that easy. Even without the fog I probably would have mindlessly just shopped as I always have done. Oh I always used coupons and didn't overdo (I would like to think) but I have always had more stuff than I truly NEED. So, I did not shop.

I want to reach my goals. I want to bless others. I want to help fund a Jesus well (water) for the poorest in Asia. I want to supply blankets, bibles, food and shelter for someone who has nothing. I desire to live sacrificially this year to accomplish these goals.

I have so much. I have a modest but large old home, a closet with too many clothes, weeks of food stored in the kitchen, access to modern medicine and four bibles. I have too much. I plan to pare down to give to a local charity that has a thrift store.

Am I doing this to impress others? No. I am doing what I believe is the least I can do for others with the riches granted to me by God. I am doing what I think Jesus would want of me and I want to please my Lord. Have you ever wondered if there is another reason to save money? There is, it is to give to others. Whatever your budget or walk in life, never forget that there are others who simply want bread, a blanket or a cup of non-polluted water. What could you do to meet their needs?

Thursday, February 3, 2011

Managing money for Christ

Today I finally felt pretty good. I cleaned the bathroom (gross), my knee felt okay and I threw in a load of laundry. After that was accomplished I sat down to get back to my Bible study I am doing with some ladies from my church. After finishing the study, I picked up a notebook I had with me while on vacation in New Jersey. As I thumbed through it I was caught off guard. In the pages were notes I took from a book called "Radical". It is new out in paperback and it is very convicting, that is for sure. I scanned each page and looked over the promises I had made:

1. Read "Operation World" and pray for a different country every day.

2. Place the Bible in a superior position in my life.

3. Not give - sacrifice! This step is not meant to be easy.

a. cap my lifestyle
b. pare down belongings
c. sacrifice belongings for others if called to do so.
d. postpone purchases
e. give beyond my ability
f. spend money on things that are gospel centered
g. give in a way that is church focused
h. give to a specific tangible need
i. give to someone or something you can trust
j. sacrifice every possible dollar

4. Radical in my going!

a. vacation bible school
b. reading to nursing home residents
c. pray and wait for other opportunities

5. Join my church and tithe

I am so sad to say I have done none of these things, however, I am going to start now. I will be writing on my progress in the future.

For more information go to www.radicalthebook.com I was not compensated for this endorsement of the book or its contents. Just lead by God's Spirit.