Late Nights…

Most people do not know that I struggle with fibromyalgia. Chronic deliberating pain that often makes it impossible for me to complete simple things….like combing my hair and buttoning a shirt.

I received the diagnosis of Fibro and borderline Lupus in the military after being in for 16 years.  Just like many others, I thought my persistent pains and aches were just a part of the toll of running, numerous deployments and working in difficult enviroments. After 2 days of intense all over pain, my doctor informed me that my body was undergoing a major change. There was no cure and that my symptoms would get  worse as I got older.   I begin to realize that “late nights” would take on a different meaning for me.

My love/hate relationship  with my body began shortly after that. “I will fight this!” I vowed. I didn’t realize how hard the battle would be. After retirement, I continue to exercise and eat right. My body fought back…with a vengeance. Reminding me that no matter how hard I tried, It would always be ahead of me in the race. Always one lap ahead of me…the only thing I could do is try to catch up.  To keep running!

My laps are never easy. My body gives me signs and symptoms when a pain flare is about to occur. My body warns me of impeding rain, I plan accordingly. It tells me when I have been on the go too many days in a row, I take a day of rest.  It warns me when I am stressed, I plan a solace …

I bargain with my body daily. Some days I win, and some days I lose….never graciously. My defeats  come with intense stiffness, excruciating pain, sleepless nights, light sensitivity, pain and memory issues  Some flares last for a couple of hours to several days. My pain is worse at night, when I am alone and the world is fast asleep.  Late nights curled up in a ball under a heated blanket filled with insomnia and pain. Some nights  I have often sat outside watching the stars….praying….waiting on the sun.

When I wake up, I feel like a new person….literally I am.

My ability to push through my pain daily keeps others wondering.  I look great on the outside, but  Im constantly trying to keep up. My high pain tolerance level allows me to operate normally on a pain level that many would have to seek medical attention for.

My trips to the ER  come every 4 to 6 months. The nights when I can no longer find a home remedy to bring my pain level down. Over the counter meds, epson salt baths, yoga , exercise and meditation lose their strength.  I become immune to regular pain relievers . Even prescribed narcotics cease to dull my pain.  I sit for endless hours in an ER to receive a shot that lulls me into a peaceful state.

It is during this time, I often mentally battle with my ability to continue on this journey. It is during this time I understand how many people with chronic pain have opted for the presumed “easier way out.”

I’m grateful my spirituality  prevails and the morning brings a joy!  I count my blessings after late nights and I am truly thankful….thankful that Im not confined to a bed or a wheelchair. Thankful that I know that each  flare will pass….eventually.

Thankful to see the sun peek through, reminding me that I  made it through to another beautiful day.  Thankful that through it all, I’m still running…

If you are struggling with any pain, whether physical or mental.I pray  you find the strength to wait on the sunrise.

Peace, Love & Empowerment

V

When Your Worst Is Really Your Best

I always seem to forget how truly amazing I can be. I’m sure you all do the same. It’s so easy to feel the pain and fatigue deep in your bones and lose sight of how strong you really are.

Today was a pretty typical day. Worked last night (pediatric respiratory therapist) and dragged butt all night long. Gave report this morning semi-coherent thanks to a ridiculous amount of caffeine. Had to stay over for an educational inservice on new equipment. Went home and fought to sleep, even though I was exhausted, due to my pain level and running brain. Finally fell asleep, hallelujah!

Got up and then immediately started mommy world. I had to get snacks, go to the potty with the kids, referee arguments, soothe stubbed toes and hurt feelings, teach the fine art of sharing, and work out a “what show will be watch” compromise. Thank god (and my in-laws!) for my Keurig! Even so, I had that bone-deep fatigue that gnaws at you.

Everyone started coming home/to visit/to spend the night and my house went from zoo to Grand Central Station noise level. I can’t handle that as well as I used to. With fibro, I get more overstimulated than a sugared-up three year old at DisneyWorld. My pain increased, fatigue increased, and irritation increased.

Add to that chaos cooking dinner, kid bath time, and the overtired kiddos becoming more and more whiny with each passing second. I was pretty much feeling the same way. Finally got the kids in bed despite much stalling! I was full scale finished. Everything aching, especially my traitor back, and feeling like I hadn’t slept in a week. Misery courtesy of fibro, CFS, a bad back, night shift, and motherhood!

I started to get annoyed at myself for not handling my day well. It wasn’t until my sister-in-law pointed out that I accomplished a whole lot more than I felt like I had. The night at work may have been very long and exhausting, but I accomplished quite a bit and had a full patient assignment. I just got a promotion and have been actually keeping up well! I also made it through report without dozing off mid-sentence. That definitely feels like winning. I picked my daughter up from the sitter across town after working 13 hours and didn’t feel so tired that I was essentially driving impaired. Can I get a woo hoo?

I got a short nap in and then functioned mostly like any other mom in the world would, despite my health issues. I got things accomplished, answered work emails, and snuggled with the tiny humans. Not too shabby! I was tired but still helped build a racetrack and braided my daughter’s hair for bed. We made it through playing in the front yard, allergy medicine for the small ones, and a few temper tantrums.

These are all things that healthy people take for granted and we have to work much harder for. The greatest thing about us is that we are fighters! We’re tough, and make things happen. Some days I struggle to get dressed but I do eventually. We have to think things through to save energy. We work so much harder at things than healthy people do but we just keep going. That is pretty freaking amazing!

To my fellow fibromites, know this. You are incredible! You are brave, you are strong, you are proof that people can do anything. Every single day life for us is difficult but we keep going. That is awesome. You are awesome. We are awesome. Let’s not forget that!

Take care of yourself….. and Life will follow

Originally posted on 05/24/2013

Today, is the Friday before Memorial Day weekend. My entire Family had made their plans and I thought what a great chance to go to visit my Grandma.

When I “go home” for visits I always feel so rushed and torn that I am never spending enough time with any of them. I have my Parents, my sister, my Grandma, a Great Aunt, and friends that I want to visit. Seeing as how our visits are usually from a Friday to Sunday. It makes it impossible to see everyone that I want to see.

I thought this would be a great time. I was even thinking that I have made Fibro friends that live in towns that I pass on my way down that I could ask if anyone wanted to go for a cappuccino/coffee, meet in person. I would be able to get a good stretch in and then head on my way.

I would visit for 3 days and be able to spend plenty of time with my Grandma, her Sister, a few friends, and still have time to sit down, write or even maybe relax. (I may have to be reminded what “relax” means again).

I have been looking forward to this trip for a long time.

I hit a flare on Monday and have not been able to get rid of it. Today it decided to add a headache leading to a migraine.

I have worked every day this week (10 hours on Wed). I am taking Vicodin every 4 hours which basically takes my pain from a 10 to a 5. I have been waking up every 3 hours needing to adjust, apply ice or heat, and take another pain-killer.

I seldom stay down even with a flare. I push through them.

However, the trip is 4 1/2 hours without stops. I would need to stop a lot. In addition, my body needs these pain pills right now. I only use them when I am in a bad flare. I do not take them when I am going to drive. I take them after I arrive at my destination. I know that being in a flare can cause enough “fog” or unclear thinking leading to reaction times not being “normal”.

It was such a hard decision. I decided to stay home and to what will be a surprise to many of the readers ~ I have not yet gone to work.

I posted this on my Fibro page this week;

This is the perfecthealthy post for me right now. I am supposed to go to Illinois by myself this Friday to spend the weekend with my Grandma. I am in such a flare, pain is highest ever. I know I should stay home even tho it means missing my Grandma and that my husband and Daughter will be off on their own weekend plans. The guilt is worse than the pain sometimes. I don’t miss things, I even worked ten hours thru pain and tears because I knew my Mgr needed my help. We do need to take care of ourselves. Not always an easy choice but the right one.
Many of my FB friends posted two scenarios. They either make themselves do everything no matter how much pain and suffering they are going through at the time or they miss out on all of the family/friend events that they want so desperately to attend.

I know that I am the first example and am scared to death of becoming the second. I personally find nothing wrong with either of the choices.

I think that like everything in life I need to find a way to balance both choices.

I realize that if I don’t take care of myself and keep going I end up worse and then I am no good to anyone especially myself.

 

I continue to do everything that I can everyday to be a

Fibro Warrior ~ Living Life!

 

5 Reasons Why Fibro Fighterz Are Badasses

1. We wage a war each day we wake up, fighting an internal battle within ourselves. Sometimes, I like to picture my body fighting back, as if there were a tribe of tiny little army men with their little weapons, *pew* *pew* *pew*. Sometimes I have to aid them in battle with a pain killer, but that’s okay. It gives them time to rest up for the next battle. Positive visualization is a wonderful tool for relieving our pain sometimes. Close your eyes, picture your pain. What does it look like to you? I’ve often visualized my pain as little ninjas with extra-sharp throwing stars. They ricochet off my muscles, and attempt to kick some serious ass. Hey, the point of this exercise is to make yourself smile. Think of your pain as something silly. It might make it hurt a little less, or at least give you a good chuckle or two, and that is worth something! Today, I visualize my pain as a pair of pissed off kittens in rainbow dresses.

Quick! Emergency Kitten Will Always Make You Feel Better!

2. If nothing else, we have learned to multi-task. WELL. Despite our raging pain, we press on every day. If that isn’t BAD-ASS, I don’t know what is.

3. We have quite a large network of friends. Online, offline and in-between. Talk about a huge support system! Our Fibro Friendz are there to help us through our rough times, laugh with us in our good times, a person to share our experiences with, lend their shoulders to cry on and share hugs with us when we need them. They are an extended family, one that will always be close-knit, and one that will always understand each other.

4. We can rock a pair of pajamas like high fashion haute couture. We have perfected the art of the “messy ponytail.” We have a slipper collection that rivals a fashion model’s shoe collection. But the best part about all that? We rock that shit with style.

5.  No matter what, we NEVER GIVE UP THE FIGHT. And that, my friends, is something to be real proud of.

Thalasso-WHAT?

Thalassotherapy shown to benefit Fibromyalgia patients.

This is something that I am happy to see! There are a really good amount of studies going around concerning Fibromyalgia and treatments that help ease the pain. Compared to years past, it’s a marked improvement, to say the least! I even keep a specific Google Alert set up to e-mail me when any news article with the word “Fibromyalgia” pops up, so I can keep on top of the latest news, research and studies going on with it. This morning, when I checked my e-mail, an article about Thalassotherapy for Fibromyalgia came up!

Thalasso-What-Now? I’ll admit, that I have never heard of Thalassotherapy until today, either. So, I threw myself into researching it, as I typically do when something says it’s going to help my pain and fatigue. Thalassotherapy is a type of alternative therapy, also considered a form of hydrotherapy, that involves soaking oneself in the ocean, seawater, or using sea products (typically algae or seaweed) on oneself. The theory is that when the water is absorbed through the body, the minerals that are found to naturally occur in seawater (which often include zinc and magnesium) will help to combat mineral deficiencies and enhance one’s health.

Research on Thalassotherapy is quite limited. However, the few that have been done have shown that Fibromyalgia patients who engage in Thalassotherapy have experienced improvements in both their physical and mental health. There is also a bit of evidence that shows that this therapy may even boost a Fibromyalgia patient’s emotional health as well.

Hey, even before we knew there was a word for it, I think we all kind of knew that a good soak in the ocean would do the mind, body and soul a world of good. Mother nature is capable of helping us in our healing, if we only let her.

Hello Doctor: A Better Way To Access Your Medical Records!

By now, everyone here who reads our blog knows that we love to feature our favorite websites and apps that would be helpful to our readers. There are some pretty powerful tools out there to help us on our path to wellness, I’ll be the first to admit that. But there is one thing that I have seen a great lack of: services to let us access our medical records. I mean, yes, we can of course carry around a folder or a binder with our records in them, but that can get to be rather tiresome at some point. Wouldn’t it be pretty awesome if we could keep our medical records on our phone and be able to access them at the simple touch of a button? Sounds good, eh? It’s finally possible to do just that! Hello Doctor™ makes it insanely easy to keep track of your records, right in the palm of your hand. Born out of the need for a better way to keep track of everything from test results, doctors you’ve seen, hospital visits, bloodwork and more, it is set to be a game-changer in the healthcare industry.

Hello, Doctor!

This story begins with a woman named Maayan Cohen. Her boyfriend at the time was plagued by violent headaches, which usually bothered him during the evening hours, until one morning he had woken up with a terrible headache. Maayan decided it was time to take him to be evaluated by the emergency room. Coming as a shock to all, he was diagnosed with a brain tumor, and would need immediate surgery. Thus began a battle against his cancer for the next two years. As the journey progressed, Maayan realized that
many of the doctors that her boyfriend saw would only give them both about ten minutes to talk about his condition, their concerns, and of course, trying to locate any of the recent test results from her boyfriend’s medical records, which she toted around in a huge binder. Realizing that sifting through this binder wasted more time than anything, she set out to find a better way for patients to access their medical records, and even keep them in their pocket, 24/7.

Maayan Cohen, HelloDoctor’s CEO

The Happy Ending(s)

Maayan’s story has not one, but two happy endings. The first is that her boyfriend pulled through and beat his cancer, and is in permanent remission. The two still remain great friends and talk often. The second happy ending is Hello Doctor. The frustration that she experienced during her boyfriend’s brush with cancer had inspired her to quit her job and develop the Hello Doctor application, which is set to help millions of people all across the globe have instant access to their medical records at the touch of a button, with bank-level security, so your records are totally safe. Today, their team currently consists of six people, all who have had similar personal experiences with illness and the inefficiency of today’s medical record systems.

Organize your medical records in SmartLists, by record type! Access your records in two quick taps!

Would Hello Doctor Help Me?

Personally, I think this application is amazing. As a Fibromyalgia patient who experiences terrible brain fog and cognitive impairment most of the time, I’m lucky if I can remember to grab my purse before I run out the door, let alone make sure I have all the proper medical documents and test results with me before I go to a doctors appointment. I’m also loving the clean and streamlined design of the application itself, no muss, no fuss and easy navigation so you won’t get confused using the application. You are even able to share all of your medical records with physicians e-mailing, faxing, or posting.

Hello Doctor is proving to be an extremely valuable tool to patients everywhere. There has even been quite a buzz in the media about it, with the likes of ABC News, Fast Company, The Mayo Clinic’s Cancer Blog, Forbes and TechCrunch all reporting on this new and vitally needed healthcare tool. It even won the prestigious 2013 DEMO award in Silicon Valley.

I think that it’s high time that we spend a lot more of our time taking care of ourselves, nourishing our bodies and feeding our spirits, and less time on the never-ending drab and dull paperwork.

I think it’s time for Hello Doctor™.

 

Click Here To Download The Hello Doctor App!

Bendi’s Magnetic Jewelry – Pretty AND Powerful Pain Relief!

As a Fibromyalgia patient for the past ten years or so, I’ll admit that to many people trying to “sell” me a cure for my Fibromyalgia, I’ve become jaded. It’s a natural reaction, and I think that many Fibromyalgia sufferers are the exact same way. I mean, I’ve heard stories where people have actually taken the bait that these companies are dangling in front of us. It’s sad. We all want so badly to feel at least a little bit better. To me, it’s heartbreaking and terribly cruel for companies to try and make a fast buck off of the chronically ill. But I digress.

We all know that as of this day, this moment, there is no cure for Fibromyalgia yet. Perhaps somewhere in the future, but it will take time. The best thing that we can do is learn to manage our symptoms, find what works for relieving our pain, even temporarily. Of course, I haven’t found any miraculous product that has taken my pain away, or ridden me of my fatigue. I would be lying if I said that. I’m still the same old hurt-y and pain-y Jenn. But like I mentioned above, I am attempting to learn to control my symptoms, so my life doesn’t feel so incredibly out of my control when a flare decides to peek it’s ugly head in.

Along with Fibromyalgia, I have Carpal Tunnel Syndrome, among a whole host of other chronic illnesses as well, but that’s a whole other blog post. Because my profession is writing, my wrists are often achy, with the rest of my arm and my fingers becoming numb after awhile. It is not a pleasant feeling. I have to get up and shake my arm around spastically to try and get some of the feeling back into it. I’ve tried pain creams, I have tried wearing the wrist braces that my doctor suggested that I sleep in. Those were terribly uncomfortable and scratchy, so scratchy. I still try to wear them at times when it gets really bad. I know that eventually, I have to go see a doctor for it, but with my step-dad in the midst of getting his cancer treatments, there is seldom time for much else as of lately.

I’ve heard some good things about magnetic jewelry. I’ll be honest though, like I said, I’ve become jaded, so at first I was quite skeptical as to the supposed benefits of these bracelets. But, I’m willing to try almost anything once. So, I actually was really excited to pick out two bracelets, one for each wrist. Bendi’s Magnetic Jewelry offers a bunch of amazing styles of magnetic jewelry, really anything to suit anyone’s tastes! Ultimately, here is the first one I chose:

and then this one….

I squealed myself silly when they arrived in the mail. They are so pretty! The even have Fibromyalgia awareness bracelets! They also offer anklets, earrings, necklaces and more! But anyway, each bracelet can be custom sized so it’s totally unique to you, and the best part is, their jewelry is totally affordable. When I slipped them on, I’ll admit that I did so with some skepticism. After an hour or so I hadn’t felt any different. I couldn’t pinpoint a big change, but I also didn’t expect these to take away the pain entirely. But I did start to notice little tiny changes, especially when I was typing. When my arm would normally go numb with the carpal tunnel, I noticed that it wouldn’t any longer. Where my hands would often swell because the pain was so bad, they no longer did.

The changes were subtle, but they definitely were there. I was rather pleased. I wear them everywhere I go, but especially when I am working on the computer. Nothing helps like these bracelets.

Seriously Go Check Out Bendi’s Magnetic Jewelry!

New Biotech Company On Verge of Finding A Cure?

New Biotech Company Possibly Found Cause AND Cure For Fibromyalgia? Photo via StockFreeImages

Over a decade of medical research has yielded some promising results in terms of finding something to finally ease our pain and suffering with Fibromyalgia. Dr. William “Skip” Pridgen has been researching Fibromyalgia for the past 15 years while simultaneously working in this full-time surgical practice, Tuscaloosa Surgical Associates PC. Through his research, he has developed a new drug and a treatment that may one day actually provide a cure for Fibromyalgia! His research has also led him to create Innovative Med Concepts, which is a biotech company that one day hopes to bring forth the medical discoveries to the marketplace.

While there are currently various drugs on the market to treat the symptoms of Fibromyalgia, there is no definitive cure for the illness itself. Pridgen, along with Carol Duffy, who holds a doctorate in virology as well as being an assistant professor of biological sciences at the University of Alabama, have together developed a drug that both believe will cure the problem. So far, two trial phases to test their new drug and treatment have yielded some incredibly promising results. Both researchers hope to soon move on to the final phase of the testing, but that’s a process that could take several years. However, if the results from the trial phase prove to be successful, the United States Food and Drug                      Administration could approve the drug for widespread use in humans.

Pridgen says “We feel we are on the right track and feel this is a real game changer, it is the tip of the iceberg. What we are discovering will accomplish so much more.” Duffy and Pridgen have thus far completed the first two test phases which must be completed in order for the new drug to come to market. In the first phase, the drug was tested on lab animals, whereas phase two had involved limited tests on Fibromyalgia patients, half of which were given the drug, and the other of the half were given a placebo. Those phase two results are now coming in. Pridgen comments “We got 90% of the results back and they are very positive. In the next couple of weeks we will see all the data.”

Thus far, Pridgen has raised about $5 million dollars for the tests, but additional funding will be needed for phase three testing. Pridgen is looking to various funding sources, which may include partnering with another biotech company or seeking financial backing from investors. The third phase of testing will take approximately 2-3 years to complete and will start with a thorough toxicology study to make certain that the higher doses of the drug will be safe for the Fibromyalgia patients taking it. If the toxicology study results satisfy the FDA, they would give the OK to start testing.

Pridgen first got started with his Fibromyalgia research while he was attempting to help his patients that were dealing with pain from irritable bowel syndrome. He had first discussed the problem with his mother, who is a biotechnologist at St. Jude’s Children’s Research Hospital in Memphis, Tennessee.  As the two continued to talk about the subject, they began to theorize that Fibromyalgia may be caused by a herpes virus that weakens one’s immune system. That was when Pridgen began extensively researching Fibromyalgia. Pridgen also states that he didn’t get serious about it until he had accompanied his daughter on a medical mission to the country of  Honduras. Pridgen’s daughter is fluent in Spanish, and she served as his translator in treating his patients. He learned that many of them were suffering extreme pain bought on by Fibromyalgia.

Pridgen says that seeing the suffering first hand of those Honduran patients drove him to devote more of his time to researching the condition. It also had meant working two jobs, medical researcher and surgeon. Pridgen admits that working both jobs made life with his family and office personnel tough at times. Pridgen also adds that many people think that the development of any new drug or medical treatment often occurs in a pharmaceutical company, but that it indeed has been happening lately in smaller start-up biotech companies like Innovative Med Concepts.

Pridgen says “The ultimate goal if the drug succeeds will be to get people suffering the pain caused by Fibromyalgia back into the workforce and back to where they can enjoy life.”

Music Reduces Pain In Fibromyalgia Patients

New research shows that music can help to reduce pain in Fibromyalgia patients.

Ah, music. There probably isn’t a better feeling then snuggling into your pajamas, turning up your MP3 player and blasting your favorite song. It can be incredibly uplifting, and have almost an ethereal quality to it. There was never any doubt in my mind that music is one of the tools that has helped me to cope with my pain on a personal level. There’s a bit of a mantra that I like to live by when my pain is really bad, “When the headphones are on, the world is off.” 

Music As A Painkiller?

New research indicates that music can actually reduce the pain of Fibromyalgia and even increase our mobility. Researchers studied 22 Fibromyalgia patients, who were passively exposed to two different auditory conditions. The first auditory condition was self-chosen, soothing and pleasant music. The second auditory condition was a “control” auditory condition, being pink noise. The patients were then asked to rate their pain and perform a “timed-up & go task (TUG for short)” The TUG exercise was performed in order to measure their functional mobility after each respective auditory condition. By listening to the relaxing and pleasant music, the subject’s pain was greatly reduced, and their functional mobility increased as well. 

Is Music An Analgesic?

Granted, every person is different, and what works for some may not work for others. Perhaps you’re not really a music person. I’ve always spoken about the importance of distraction. What is your “thing?” A hobby that you like to do? I truly believe that it’s all about re-focusing our minds and putting that energy into something else.
But perhaps more research will be done into this! I am curious to see what else could come of it. It’s just nice to know that Fibromyalgia is being studied and researched! 

Don’t wait!

Originally posted; 04/11/2013

I moved away from my hometown 20 years ago.  Everytime we come home for visits we try to visit as many as possible.

The older everyone gets I feel worse all the time about not making more time or longer visits.  Over the past year I  had been trying to get together with my Great Aunt Shirley and Gr-Uncle Sam.  They are just as busy as I am and it seemed we would keep missing one another.  We would talk on the phone or send each other letters (you know the things people call snail mail).

I finally was able to connect with them both last December.  It was so much fun. We talked forever.  My Uncle (a young 82) had just been learning how to use his new laptop.  We searched various sites and he  saved my blog and facebook page so he could read my stuff.  He also had me add my email into his contact list.  I didn’t want to leave.  Not only were we sharing stories but my Uncle is wonderful at debating.

My Aunt is amazing in her own rite.  She started out singing as a young girl on a radio program.  She was in a band that played in (omg bars), and cut records (you know those vinyl things people are using to decorate their homes). I remember hearing that she would still get royalty checks (for like under a dollar).  She still teaches piano.  She has had so many students.

They both welcome all of the children and families into their home.  Shirley teaching music. Sam either reading a book or telling the best poems.

While visiting I kept looking at the clock.  I knew I had to go. My mom had a special dinner cooking for me.  It was hard but I finally left agreeing to stop and see them at Easter and would be looking forward to Sam’s emails. I also promised that if he would find all of his poems that I would type them up for him.  He loved that idea.

We exchanged a few emails in January.  Then in February he went into the hospital with what was thought to be the flu.  In a short time he was diagnosed with Lung Cancer.  The disease was progressing fast.  We had a free weekend- no volleyball or other commitments so we planned to go see him.  He was still in the hospital.

We were then hit with one of the worst snow storms we have had in a long time.  I kept watching the weather sure we could go.  My husband, mom and co-workers told me that I was not going.  I went into an empty office, called my Uncle – I kept apologizing to him,  I was so sorry that I could not be there.  He was so understanding.  We talked a little about what was going on with him both of us knowing it was the end.  We ended the call with “Love you’s” and promising that I would be home to see him at Easter.

The next day, on my way to work I knew that I had to write a poem.  I went back in the office that I had spoken to him last and the ink appeared on the paper.

I have written poems for loved ones before after they have left us.  This was for him – while he was here.  I wanted him to know how I thought of him.

I sent the poem to my Sister and my Mom went to the hospital and read it to him.  She said he reacted just like I had described in the poem.

The next few weeks I seemed to get daily updates.  He was going home.  They were not going to treat him.  My parents were going on a short trip.  The Doctors had given him between a year to two.  Hospice was being called in.  I gave him 2-3 weeks.

We always go to see my family on Good Friday for Easter weekend.  This year we went down there on Thursday.  I was going to visit him on Friday.  I called. My Aunt told me that he wasn’t the same and might not recognize me.

I don’t know what I expected.  My parents had prepared me. However,  they did not even know what I was walking into see.

I got there with my Grandma and Daughter. My Aunt said the nurse had been there in the a.m. and… I don’t even know what she said next. I didn’t wait for her to say I could go in – I went into his room.  He was laying in the bed hooked up to oxygen.  Sleeping.  I set on the bed next to him, holding his hand, talking to him.  I talked to him about everything.  I told him how sorry I was that I didn’t come earlier.  My Aunt said that last time that he responded to something correctly was when she had read the poem to him.  She read it to him twice.  I didn’t want to leave his side.  I cried.  I told him that I loved him.  I told him that I would keep my promise to find his poems and have them all typed up.  I told him it was okay.  He didn’t have to wait until I came back again.  I wasn’t coming back until Memorial Day weekend.  I kissed his hand and his forehead and said goodbye.  He never woke up the hours that we were there.

The next morning we received the phone call.  He was gone.  I  called my Sister to tell her what had happened.  She said, “He waited for you sis”.

I spent that day with my Great Aunt and my Grandmother helping make the arrangements.  In between the planning and crying, their were childhood stories being told that I will cherish my entire life.

His funeral is this Saturday.

I know so many of us with Fibromyalgia  put off doing things until we feel in less pain or are not as tired.  Our time with our loved ones is so short.  I decided 3 years ago that I would not let Fibro and it’s evil sidekicks make me stop living.  Now, I have decided I am not going to allow my living to keep me too busy from slowing down and seeing those who matter.

All I can say is Don’t Wait!