Who's Worth A Spoon?

As I read a FB post this morning it was a sad reminder that summer will soon be over. My favorite time of year seemed to have slipped away like unnoticed sands in an hourglass. How could this have happened? This season was supposed to be my time to plant flowers, weed the beds, mow the grass, take care of the pool and swim at my leisure. When in reality, I did very little of those things during my favorite smoldering hot months.

I replaced those much loved chores with doctor’s appointments, medical tests, surgery, IV treatments, days in bed due to pain, naps due to medications that make me groggy and days which I could not swim because my immunoglobulin IV treatments drop my core temperature and I am unable to enjoy the warm water of our pool.

It’s a harsh reality that due to my illnesses, unless there’s a healing miracle in store for me, my life will never be what it once was.

I was reading the following link which reminded me that if I have only a handful of “spoons” each day, then I have big decisions ahead of me. It involves every family member and friend. If each comprehends this analogy then they are proving their love for me and their understanding of my illnesses.

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

I don’t have an unending supply of “spoons” like most healthy people, so I must only give my spoons for special events and to special people.

Those people who love and care for me will be getting my spoons. You know who you are. The people who drive me to appointments, run my errands, keep the masses updated when I have had a fall or am sick, those who call or send me thoughtful notes or cards, those who look me in the eyes and tell me you pray for me, those who bake cakes, cook dinners for me, and sometimes even serve me when I’m too tired, sick or sore to get out of bed.

With each diagnoses, I lose spoons. So I don’t have many when I start each day. I know that God will provide for me, He already has with all of those people I have listed above.

Thanks to each and every one of you. And thanks to those who care enough that you use your time to read my blog. It means more than I can say.

1 Thessalonians 5:18, "In everything give thanks for this is God's will for you in Christ Jesus."

Love and prayers to all,

Skeeter

I'm watching God's love grow, heart to heart.

On this day, twenty-three years ago, I experienced the most horrible pains that I had in the past twenty years of my life, child birth. Little did I know the pain on August 30, 1988 was just a drop in the bucket compared to what lay ahead. And little did I know, twenty-three years ago, that God had given me a gift so amazing that it would change my life in so many wonderful ways.

It’s so hard to believe that my 9 pound 5 ounce bundle of joy is now 6 foot 3 inches tall and quite a bit larger than his birth weight. He has a heart bigger than all outdoors, a remarkable love for all living creatures, and the ability to sing so pure and sweet that every time I hear him sing chills run down my spine and tears run down my cheeks. He’s full of facts that are totally useless to the average person (sort of like having our very own Cliff Clavin from the TV series “Cheers”). He can have a short fuse at times (like his mother) and has a helpful and giving spirit (like his dad). He thinks his brother got all of the “funny” genes. But trust me, Zayne is funny and just as full of life as his brother and partner in crime, Zakry. Not to mention, Zayne has a surprisingly funny giggle for a guy his size. It’s hilarious!

Zayne and I danced to a song at his and Irish’s wedding that seemed to have been written just for us. The song is, “Heart To Heart” by Toby Keith. It reminded me of the time when Zayne was three years old, sitting in his high chair and threw a bowl of cereal, milk and all, at me because he “thought” I would laugh. When in fact what I did was quite the opposite of laughter. From the mention of Zayne’s exact height, to our face to face disagreements, to our hugs, kisses, laughter and the fact that he is in fact a “chip off of the old block” and a momma’s boy, this song was perfect. It’s sung from the prospective of the dad who has watched the mother/son relationship evolve over the course of the son’s life. I couldn’t find a good video link and I really wanted you to hear this song. As a very poor replacement, I have typed the lyrics as a birthday tribute to my eldest son, who will always have my heart and my unconditional love.

“Heart To Heart” lyrics: I watched him throw his oatmeal bowl halfway across the kitchen floor. His momma said don't let me see you do that anymore. And he let loose with a cup of orange juice right down the back of her dress. Without a doubt she lined him out then cleaned up the mess. Now he is just a chip off of the old block, just like me, we keep her on her toes a lot. He'll grow to be six foot three, yeah he's gonna be just like me. He'll be tall and play football but he'll always be a momma's boy. ~ And when he cries she'll match him tear for tear. When he laughs she'll grin from ear to ear. When he's wrong they'll stand there face to face. She can put him in his place. Side by side and hand in hand, she'll talk with daddy's little man. He knows that she's done her part. I'm watching God's love grow, heart to heart.

Just like the lyrics in that song, when we laugh our Father is happy, when we cry our Father cries. He holds our hand and he loves us with all His heart.

Thank you God for giving me such a wonderful gift, August 30, 1988. Happy Birthday Zayne!!

“Every good gift and every perfect gift is from above.” ~ James 1:17

Sometimes we have struggles that we don’t understand and we may wonder why me? But at the same time we must remember that God has blessed us with so many gifts we don’t deserve. I have been granted more blessings than I can count. One of those was given to me 23 years ago today.

We can focus on the pain and strife or we can focus on all of the magnificent love that our Father bestows upon us every day. We have decisions to make, decisions that map out the journey of our lives.

"When faced with a decision, many people say they are waiting for God. But I understand, in most cases, God is waiting for me." — Andy Andrews

Love and prayers to all,

Skeeter

“If the good Lord’s willing and the creek don’t rise”………

 

Today began my beach-count down! What a great way to start a week, counting down the days for a much needed trip to relax on the beach for 12 days!! No doctors, no needles, no tests and no IV treatments. Just me, my tag-team support group, a few books and sand & sun! (Well really shade under the umbrella. But you know what I mean)!! :-) Of course me being me, before I could stick my toes in the sand, I had to throw in an unexpected trip to see my favorite doctor!

Since my neck surgery, November 29, 2010, I have had issues with my bladder. Not the leaking issue some women experience. That problem, the one that makes you fear sneezing or laughing too hard! No, that's not the one. My problem has been the opposite. I have to make myself go and then sometimes I feel like a kid waiting for Christmas, wondering if it will ever arrive! So, all of that waiting and wondering caught up with me, an infection. Yippee, antibiotics, an Rx for 5 days. Actually I was on a pretty good run there for a while. Since starting my IgG blood treatments I haven't had an infection or needed antibiotics. So I'm thankful for the “antibiotic-free” 7 month stretch.

I was also there to see the doc because I have the sinus crud. Sniffling, sneezing, coughing, aching, stuffy head and the whole bit. Since he knows that I just love rinsing my nose out with one of those blue booger-getters that’s was he suggested I do, along with a recommendation to rid myself of the Mucinex Man. "Mucinex In, Mucus Out". Right, well, we’ll see. For twenty bucks he had better pack his bags and get out!! On second thought, I think that he or his raven haired nurse through a nasal spray sample in my purse. I’ll have to check that later…….

To make matters worse for the beginning of my count down week I’m dealing with my RSD. (If you don’t know what I’m referring to please read the blog titled “Wake Up ...... It's Time To Take A Nap.”)

The bone crushing feeling in my left ankle began last night and has gotten worse throughout the day. I hobble in on one foot and tell the nurse I’m there because my nose is running and my t-t’s not! Ain’t that a hoot! Well, it would have been if I had been up to hooting. But trust me, there’s just something about feeling like your foot is broken to pieces that makes a person not feel like hooting!

As I stumble and stagger my way into Walgreen’s I was thinking that I would skip the Rx, the booger-getter and the Mucinex and buy me a cast for my foot.

As my sweet Aunt Lois always said, “If the good Lord’s willing and the creek don’t rise”………this chick is going to the beach Friday!!

Love and prayers to all!!

Skeeter

Foggy Days and Foggy Nights......With Fibromyalgia

As I journey through life I am constantly learning things about myself and others. If I take time to pay attention, take in what I see and hear and watch people around me, then everything can be a learning experience.  I have realized that sometimes, based on an outward appearance, I have given too much credit to people that I thought were wise and could give me sensible advice. On the other hand I have overlooked people who have made thoughtful gestures and were kindhearted and selfless. These people are often overlooked because they are most often the humble, quiet types. They take the focus off themselves and make certain others are cared for. My point is, what we see is not always what we get.   

A person who has Fibromyalgia LOOKS fine but often feels horrible. I can remember many times going to work, or church or out to dinner with my family when I looked “fine” but felt like I had the flu. My body would be so sore that it hurt to feel my clothes touch my skin. My head would throb until I thought it might explode. But it was pointless to say how I felt because I looked fine. It took several years of doctors visits, blood work and medical tests before I was finally diagnosed with Fibromyalgia. It was in 2001, I had just explained how I was feeling and the doctor and I were going over my latest tests, which were all negative. As I was standing up to leave he put his hand on my neck/shoulder area and gave a little squeeze. At the same time he said the sincerest comment, “Don’t worry, we’ll figure this out.” At that time I closed my eyes and made a sound, which he recognized as pain. He asked if that area hurt and how badly? He then realized that I was hurting because he had squeezed a “tender point.”

Tender points are pain points or localized areas of tenderness around joints, but not the joints themselves. These tender points hurt when pressed with a finger. The actual size of the point of most tenderness is usually very small, about the size of a penny. These areas are much more sensitive than other nearby areas. In fact, pressure on one of the tender points with a finger will cause pain that makes the person flinch or pull back. There are 18 tender points important for the diagnosis of fibromyalgia. Tender points are scattered over the neck, back, chest, elbows, hips, buttocks, and knees.

http://www.painneck.com/blog/fibromyalgia-neck-pain/

I truly believe that lots of people get a diagnoses from their doctor because the doctor is tired of dealing with them. That makes it tough on those who are truly suffering. At the same time, a person might suffer for years before getting a diagnoses of Fibromyalgia. The only person who knows and understands their pain is that person. Don’t ever let someone tell you that you are not hurting. I have read so many horror stories about people who lived with chronic pain and ended their own life because no one believed them.

(Fibromyalgia medical facts were found at Wikipedia.com) Fibromyalgia is a medical disorder characterized by chronic widespread pain of the muscles and connective tissue and accompanied by allodynia, which is a heightened and painful response to pressure or light touch. Other symptoms include debilitating fatigue, sleep disturbance, and joint stiffness, numbness and tingling of skin, and cognitive dysfunction (known as fibro-fog), confusion, forgetfulness and difficulty concentrating. Other symptoms include prolonged muscle spasms, weakness in the limbs, nerve pain, muscle twitching and chronic sleep disturbances. Although fibromyalgia is classified based on the presence of chronic widespread pain, pain may also be localized in areas such as the shoulders, neck, low back, hips, or other areas. Many sufferers also experience varying degrees of myofascial pain. Myofascial pain can occur in distinct, isolated areas of the body, and because any muscle or fascia may be affected, this may cause a variety of localized symptoms. More generally speaking, the muscular pain is steady, aching, and deep. Depending on the case and location the intensity can range from mild discomfort to excruciating and "lightning-like" pain. Knots may be visible or felt beneath the skin. The pain does not resolve on its own, even after typical first-aid self-care such as ice, heat, and rest. Neither degenerative nor fatal, the chronic pain of fibromyalgia is pervasive and persistent. Most fibromyalgia patients report that their symptoms do not improve over time.

The medications that I take affect chemicals in the brain that send pain signals across the nervous system. The meds make me sleepy and my mouth very dry. Other possible side effects are blurred vision; dizziness; drowsiness; gas; headache; increased appetite; lightheadedness; stomach pain; trouble concentrating; weight gain.

And for goodness sake, why does practically every drug have a possible side effect of weight gain? WHY?!?!  J Just sayin?

A number of factors can make fibromyalgia symptoms worse. They include:

·         Anxiety

·         Changes in weather -- for example, cold or humidity

·         Depression

·         Fatigue

·         Hormonal fluctuations such as PMS or menopause

·         Infections

·         Lack of sleep or restless sleep

·         Periods of emotional stress

·         Physical exhaustion

Because infections are a reason for Fibro “flare-ups”, in my next blog I am going to write about my history of frequent infections caused by, what I was diagnosed with in December of 2010, Immunoglobulin G Deficiency. A blood disorder for which I am now being treated with monthly IV treatments at Brookwood Hospital in Birmingham, AL.

Thanks so much for taking the time to read my blog. It reassures me that I have family and friends who care enough about me to gain knowledge and understanding about my health. Your time is precious and each time you read my blog you have given me a gift. And I want to thank you!!

Love and prayers to all,

Skeeter

The fibro-fog is one of the worst symptoms for me personally. The pain is horrible, don't misunderstand. But the inability to think or concentrate and times trouble finding the right word you are looking for drives me crazy. And please, for goodness sake, don’t interrupt me, it might take me a few moments or minutes to remember what I was saying. ....and I know what you're thinking, ..."I do that!" But trust me, fibro-fog is forgetfulness to the extreme and is very frustrating!!

Wake Up ...... It's Time To Take A Nap

It's the beginning of another hot and humid Alabama day. Just like most of you I start my day with a trip to the bathroom. Not just for the obvious, I have morning meds to take. The usual for us forty-something’s, a multivitamin. Then there’s vitamin D, which most Fibromyalgia patients are encouraged to take. Next are two prescribed meds for the Reflex Sympathetic Dystrophy (RSD) and Fibromyalgia.

In today’s blog I am going to describe my most recent diagnoses, RSD, by far the worst. I want all who read this blog to know I do not want anyone’s pity. I want people to pray for me. People, who have taken the time to read this blog, learn about my conditions and understand what life is like living with chronic pain disorders. People are so busy these days. So busy in fact I have close family and friends that know I live with chronic pain but have no desire to educate them-selves so they can understand what I go through. How can a person pray when they don’t even know what to pray for? God says to be specific when we pray. Generic prayers are better than no prayers, but I would love for my prayer warriors to pray specific. The only way to do that is to get involved in my life through information, this blog will help.

(Causalgia) RSD also known as Complex regional pain syndrome (CRPS) is a malfunction of part of the nervous system. Nerves misfire, sending constant pain signals to the brain. The condition usually follows trauma, such as an accident or surgery. (Mine, I assume were the three herniated discs in my lower back and then surgery). Symptoms vary as the stages evolve, so I have decided to list only the symptoms that I am currently experiencing: Constant chronic burning pain which at times can feel as if a red hot poker were inserted over and over. Pain can be throbbing, aching, stabbing, sharp, tingling or *crushing. There is extreme sensitivity to touch, which I feel in both legs, mainly from the knees down, in the feet and toes. A simple light touch, clothing, even the sheets touching your legs and feet can cause an extreme amount of pain. Spasms and muscle cramps of both legs and the affected limbs often become swollen, usually my feet. Just prior to the swelling my toes and the surrounding skin turns a bright red, the pain and tingling get worse and then the swelling begins. At times it feels as if a knife is being jabbed into my feet, the tops, sides, and soles, over and over. Sometimes it feels as if I am walking over glass.

*Crushing may be a description that you haven’t heard of or experienced. This is the worst symptom for me. It comes on sudden and feels exactly as described, crushing. Imagine, it’s 3AM and you wake up feeling as if the bones in your leg are broken to pieces, your ankle feels broken and it feels like shards of glass are piercing your toes. This happens at random times and is absolutely horrible.

This link will show where RSD rates on the McGill Pain Index. RSD is rated the most painful form of chronic pain that exists today. As you can see on the scale, Arthritis pain is ranked about an 18, Cancer pain is 24, Chronic Back Pain a 26, and then RSD/CRPS is ranked a 42! The only thing close to RSD pain is the amputation of a finger. But keep in mind, RSD is 24 hours a day, 7 days a week. http://www.freewebs.com/rsdgirl/themcgillpainindex.htm

My General Practitioner has found a local doctor that specializes in RSD. This is an answered prayer. I won’t have to travel across the country, although I was willing to do so. The specialist practices at UAB Hospital. Shin J. Oh, his credentials are quite impressive and my doctor’s office will be setting up an appointment for me to see him as soon as possible. http://medicine.uab.edu/neurology/faculty/Oh/    As soon as I have an appointment with Dr. Oh I will know more about the method of treatment.

The morning medications affect chemicals in the brain that send pain signals across the nervous system. The meds make me sleepy, my mouth very dry and often I get headaches. So most mornings a nap follows my medication routine but without the meds the pain is unbearable.

My next blog will cover Fibromyalgia and how it has affected my life for the past 10+ years.

Thank you for your interest in my journey. Your prayers are appreciated and your desire for knowledge and understanding goes beyond what I can express. My heart is filled with so much gratitude!

Until next time, love and prayers to you all!!

Skeeter

In the Beginning...............

I have seriously considered starting a blog for quite a while but have continued to put that thought on the back burner, until recently. I read a FB post from a friend who recommended I do just that, start a blog. So, here I am. I assure you that I am not a professional at anything! My entries will be filled with grammatical errors, my medical information will be my own experiences, not medical advice and my feelings will be raw, true and sincere. I’m not promising that posts will be uplifting. What I can promise is that my blogs will be true to my daily life. What I go through, how I make it with support from family and friends and how God gives me strength day by day.

This first entry will be a brief look into what I deal with daily, a list of my many medical conditions and a look into my bag of medications. And please, before I hear from anyone whose opinion is that I take too many meds, please Google each condition. Each has its own lengthy list of symptoms. Combine them all and you might possibly understand.

Give me time, in future posts to explain what a life of pain is like. Most likely, you will offer fewer opinions and send up more prayers.

My conditions are as follows.

* Immunoglobulin G Deficiency ~ a blood disorder, I receive monthly IV treatments @ Brookwood Hospital

* Degeneration  of Spinal Canal

* Degeneration of Spinal Discs

* Herniated Discs ~ Lumbar & Cervical

* Sleep Apnea

* Fibromyalgia (diagnosed over 10 years ago)

* Reflex Sympathetic Dystrophy (Extremely Painful!)

* High Blood Pressure

Every issue listed above has been diagnosed and then after many tests and blood work, confirmed by other specialist. In a later post I will explain all meds, Rx and over the counter meds.
Thanks for your love and support!!