Another Flare Day

Today is Sunday, July 3, 2011 and as I lay awake early this morning, ready to get up but scared to move because even now, with having done nothing to invoke pain or fatigue I am already feeling it, and my feet have not yet hit the floor. For some strange reason, we know when it's gonna be another day, like that day. Called the Flare Day.

Frustrated, I don't just GET up because I am already stiff and sore and tired. I went to bed, stiff, sore and tired just a few hours ago. I don't just GET up, I can't just GET up, I have to roll out the bed, and roll very slowly. And here it is yet an hour up and already tired, already hurting. Wanting to go to church, but church has to once again come to me. Just thinking of what to wear is wearing me down. (Thank God for the simple Black Dress, every woman should have a plain black dress) So it is not so much as what to wear, but having the STRENGTH to even get dressed. At best, I slowly get down the stairs and retreat once again to the rocker.

Listening to the first sermon and hearing this pastor speaking of the believer who stopped going to church has started going down, and I must disagree with him, because when health fails and no one seems to care... It's hard to get up and go, the Woman with the Issue of Blood for twelve years (Mark 5:25) needed help and had none, had spent ALL she had, was refused social security and because of her issue was denied fellowship, she was alone day after day, year after year in another flare, til she heard HE was coming. Things kept getting worse before they got better.

Physically I feel and am caught in another Flare, yes, you can tell it's gonna be one of those days, BUT Spiritually, I feel like a giant ready to Press, Push, Persevere and Touch the hem of His garment.
Have a super day, Flare or not, pain or not~

The Toothpick Theory

Since being diagnosed with Fibromyalgia a few weeks ago, I have noticed a decline in any interactions with most of my friends and family, mostly due to the part of MY constant pain. I have one friend who has stuck beside me through all of puzzlement of Fibromyalgia, but while yet still not understanding fully what my day entails. I have told her of the Constant Pain, the Fatigue and the Fog, yet still I don't think she understand, I even have shared the Spoon Theory which was written by Christine M, a lady with Lupus, with her as well as many many others.

But with Fibromyalgia, because of the PAIN, I needed a visual to really hit home to a point where she, as well as others and doctors would understand. Then God gave me the "Toothpick Theory". Now, I normally keep toothpicks in my purses, and sometimes, I forget they are there and upon reaching for something in a different purse (because I changed purses almost daily), and because my bags were so HUGE, I would always get "stuck" by a toothpick. It was a reminder to me that the toothpick was unsuspecting and yet painful. The toothpick is a constant reminder of the pain, sometimes, I am aware and more cautious, however there are those times when the pain is so great, the FOG is so thick, that I forget the toothpicks is in my purse/pocket. Imagine getting up in the middle of the night for some water, I say, only to find a toothpick in the dark lodged in the carpet. Although you are stuck either in the finger, hand or foot, the pain ravishes through your whole body. All the while verbalizing that she understands as I am explaining what this pain that is consuming me is doing to me, to my life as I knew it.

If you are like me, you carry several toothpicks and I am guilty, but I do sometimes use a toothpick and toss it back in my bag, only to get stuck again by it. Now in looking at the toothpick in relationship to the Fibromyalgia disease that affects some 10 million people, mostly women who are in their prime of life, and is even attacking women now, in the younger years and a few men.

Imagine, I tell my friend with this Invisible question mark of confusion on her forehead, having a BOX of toothpicks in your hand, that you are conscious of holding onto, you know one thing: You are in pain and your pain is connected to the toothpicks, PAIN we will call Fibromyalgia, even if you put them down or toss them, the fact still remain, the PAIN is on your mind, and you try to be careful not to repeat what you have done that caused THAT pain, whatever it may be, but because the pain is coming so rapidly, you have no idea WHAT, WHEN or WHERE it really originated from, that alone consumes several toothpicks because you are experiencing PAIN, all the time. Now what if each toothpick is assigned to a body part, a muscle, a fiber, a tendon, a bone, a joint, every fiber of your being? You may not get attacked by all the toothpicks at once, but there are days when you are unsuspecting, you get attacked by several at once. The toothpick may produce pain in your back, your hips, your knees, your arms, your hands, your legs, your thighs, any and everywhere. Your head, neck and shoulders usually go hand in hand. You are hurting so bad, so much, that you are losing sleep and can't get up and move around to even go to work by now, because everything hurts!

You have a toothpick for constipation and IBS, a toothpick for chestpains. There is another for the itching of your skin and the sensitivity of just wearing light clothing. You have a toothpick poking you for the rash on your foot that won't go away, and a toothpick for your migraine. There is a toothpick that is assigned to outburst of crying because you really don't know what is going on in and with your body and one for the FOG that is poking your thought and reasoning process and yet another toothpick POKING you because you have started having little flashes of lightening rushing through your brain, that you now are being tested to see if you have had any TIA's also known as MiniStrokes. As she asks and I explain to her what a stroke is, it is in being when your brain is not receiving oxygen, or maybe a blood clot that burst. I asked her if she remember her son being born without receiving oxygen and the effects it had on him, and how it affected his speech and thought pattern, yet he is still able to function as an otherwise "normal" person, and she said yes, I said, that is what a Stroke does, it affects your speech, so sometime the pain is so intense we know what we want to say, but have trouble saying it or lose our thought in the middle of a conversation.

You have a toothpick that is causing you to have dry eyes from out of nowhere and a JAW that is constantly Clenched. You have several toothpicks that has somehow broken and with their jagged edges their name is called STRESS, and it is taking you through a metamorphosis, because now it is affecting your attitude, your mood, you are slowly getting more and more depressed, even to the point of hopelessness, it is causing your blood pressure to rise, feelings of having a heart attack and even some anxiety, and this is only the beginning. You may have gotten rid of the toothpicks, but the truth of the matter is there are some you have overlooked, you willed them to be gone, you prayed for the pain to go away, but there is still some attached to you. And even though you were a Professional or maybe even A Minister, a Bible Study Teacher, PAIN still came and God did not remove it, but rather told you that there was a Purpose for YOUR pain.... These toothpicks attacks Nurses, Preachers, Teachers, Mothers, Students, Men, Women and some Children, Golf Players, Social Workers, Pharmacists, Actresses, and even Doctors just for beginners.

Then you have family and friends, some who tell you to just take some supplements or vitamins or get up and exercise and you will feel better, or they offer their unsollicited advise of what will work or what will cure THIS, even though there is no cure, and they have not walked ONE day in THIS kind of pain, BUT because you don't have the strength or energy that the PAIN has sucked out of you, you don't even offer a rebuttal, you can't. Toothpicks! Because they say things, THAT HURT! They tell you to pray when the truth is you never STOPPED praying. They tell you that you don't look sick and THAT, is a toothpick in your eye, because this time, it's your doctor, or a toothpick in your heart, because your own family telling you, it's all in your head. But they never stopped to realize, you are holding toothpicks because you haven't seen or talked to them in months, because the PAIN has driven you to a place of seclusion and isolation. Toothpicks! To my friend I say, everything that now affects me be it physically, emotionally or spiritually is like being stabbed with toothpicks in every part of my body, everyday, all day. And though I can pull one out another emerges with another name, another diagnosis. For some reason, one pain surrenders while another runs rampant through my body.

Toothpicks have caused me to decline working, even though I am still of workable age, toothpicks have caused me to apply for Social Security way too soon, and/or foodstamps, Toothpicks has stopped me from going to church regularily, because people want to hug, and HUGS HURT. Toothpicks has caused me to have to refuse the family reunion, the Sunday dinners, most activities that involve a lot of walking or thinking, toothpicks has caused me everything.... But has increase my Hope, my Faith and my Trust in God, who is Bigger than this monster.

I pray that those who are suffering with Fibromyalgia, or any other debilitating illness that preludes with unrelenting pain, you can use this to explain the type of Pain you experience every day, all day, because there is no cure and the treatments offered may work today, they may even work for awhile, but at the end of the day, you are STILL in pain and it is not guaranteed to keep working, and although some treatment worked for someone else, it may not ever work for you.

@Veronica "Pinki" Moore, 2011

This past week

It has been a few days since I really have posted on my personal journey with this FibroMonster. Have since received D Day#2 which came back with a verdict of Major Depression and had to go to the hospital the other day, it took allllllll day long for two appointments. Put on antibiotics for the H pylori which is an infection in my stomach lining that no doubt has been there for years, unknowing to me until I picked up the meds, she, who happened to be a "new" doctor that I would see for this one time only, had ordered Flagyl, I don't like Flagyl, it makes me sick, it has this nasty metallic taste. The other wonderful meds are Omeprazole, Amoxicillin and Clarithromyacin.... Not to mention, doctor #2 for the day, had her prescription orders as well, Serequel and something else to help me sleep peacefully.

Went out today to run about two errands and to get some food, while in the store from out of no where, my legs just LOCKED up and started screaming in pain, so I quickly as I could made my way back home, and once home, it was pretty much spending the rest of the afternoon and evening in the rocking chair. Even as the night wore on, my knees were like on fire and screaming in pain. The pain that is running down my back is like a knife searing through my every muscle, bone and joint. My hands and feet feel ablaze and I am tired, but I know the moment I lay down, my eyes will open wide and the thoughts in my mind will start the race again.

I never did get around to any of the writing that I wanted to do, planned to do, for you see, with Fibromyalgia, the plans are constantly being changed and rearranged. I look at young and vibrant people on line, in movies, dancing, acting, living.... and I remember, that use to be me. Wondering how this could happen to me, I remember crying myself into a deep sleep at least twice this week, BEGGING God to take me, because I just could not do this anymore. This pain is relentless. This is the weekend for the 4th of July, but can't even plan for celebration, at best, to have a day FREE from pain.

How can you say that, when you do not know?

How can u say you are my brother, my sister/my friend and you are not able to look in my face and see my PAIN? How can you claim to love me, when u don't even know me. If we are a part of the body of Christ, and I am the toe, YOU should feel my pain, even if you are the finger.

It is impossible to a part of the Body and not feel what another feels. How can you NOT hear me when I cry, when my face is stained with a permanent streak of tears? How can you claim to love me, when you approach me and I won't let you hug me, because even HUGS HURT ME?

How can you tell me to Pray, when YOU have not prayed for me knowing it is hard for me to even get on my KNEES, how can you tell me to EXERCISE, when I can barely WALK, how can you tell me to buy VITAMINS or SUPPLEMENTS when my job has been REPLACED by handouts.

How CAN you tell me to eat healthier, when I can't stand long enough to COOK and going out is a Luxury I no longer can afford. How CAN you tell me to take a NAP and I will feel better, when I have been up for 5 days STRAIGHT?

How DARE you tell me I dont LOOK sick when you know NOT what I feel.... for you see, Jesus is the ONLY one who is acquainted with THIS pain, unless you have this, you will never understand this...

Not I am not one weak in my faith, I am using my FAITH to FIGHT this, whereas you my friend, my sister, my brother, you are STILL taking high blood pressure medication, you are still taking insulin SHOTS, you are still taking (___________________) You don't look like you have High blood pressure? You don't look like you have HIV... don't judge me unless you KNOW me.

Sometimes God ALLOWS things like Fibromyalgia to come along to pull ONE closer upon His BREAST where we may feast on the nourishing WORD that is needed to LIVE that you should have gave~

10 Things "NOT" To Say To Someone Who Has Fibromyalgia

The following was written by Pam Ryan. Those with Fibromyalgia and Chronic Fatigue Syndrome will nod their head in agreement and a well-known understanding. Those who do not understand, will be wiser.


"10 THINGS "NOT" TO SAY TO SOMEONE WHO HAS FIBROMYALGIA...
by Pam Scott-Ryan

10. We all get more aches and pains as we get older.

The pain of fibromyalgia is much more severe than the normal aches and pains associated with aging. Little things that shouldn't hurt at all can be excruciatingly painful. Plus, most people develop FM long before they should be experiencing age-related aches and pains.

9. I think I have that, too – I'm always tired.

This statement shows a basic misunderstanding of the severity of the fatigue associated with FM. The fatigue of fibromyalgia is so much more than just being tired. It is an all-encompassing exhaustion. You are like someone pulled your plug, cutting of your source of power. It's kind of like taking the batteries out of the Energizer bunny.

8. My friend has fibromyalgia and still manages to work. Maybe you just need a job (hobby, etc.) to take your mind off the pain.

Translation – you must be lazy. The fact is, the severity of FM symptoms varies. Some people have fairly mild symptoms and are able to continue working. Some continue working longer than they probably should because they have no other choice, but they suffer tremendously. Others are so disabled they are confined to a wheelchair much of the time. While getting involved in a project can help to distract your mind from the pain for short periods of time, if you have a more severe case, it doesn't work well enough to allow you to consistently work a 40-hour week. And it doesn't help dispel the extreme fatigue that usually accompanies FM.

7. My doctor says fibromyalgia isn't a real disease; it's just a wastebasket diagnosis.

First of all, this doctor obviously hasn't kept up with the latest research, which clearly demonstrates that FM is a very real, physical disease. Also, to date the FDA has approved three medications to treat fibromyalgia and they generally don't approve medications for imaginary illnesses. There are a few doctors who will tell patients they have fibromyalgia if they can't figure out what is causing their symptoms and just want to get the patients off their back, but I have to question the ethics of a doctor who would do that.

6. If you got more sleep, you'd feel better.

Well, duh! One of the major problems with fibromyalgia is that something prevents the body from going into the deepest stage of sleep, when the body naturally restores and replenishes itself. Even if you manage to stay asleep for several hours, you're most likely not going to awaken feeling refreshed. And most sleep medications do little to help you achieve that deep sleep. They may help you get more hours of sleep, but probably will still not give you the deep sleep you need.

5. I read about this new product that cures fibromyalgia.

This can be one of the toughest comments to deal with because it is usually said by well-meaning friends or relatives who genuinely want you to feel better. The products are frequently some kind of “natural” supplement being sold through a multi-level marketing plan and are very expensive. If those making the suggestions are casual acquaintances, I generally just tell them I appreciate their concern and will look into the product. However, if it's someone closer to me who is likely to keep asking if I've tried the product, I go on to explain that there are dozens of products out there claiming to cure or at least improve FM and I just can't afford to try them all. Read Let the Buyer Beware for tips on how to evaluate product claims.

4. At least it's not fatal.

My first thought in response to this comment is always, “Yeah, but sometimes I wish it was. At least then I'd know there was an end to the pain.” I rarely say that, though. Of course I'm glad it's not fatal. But that doesn't help reduce the level of my pain or the depth of my fatigue. Nor does it help to raise research funding or bring attention to the needs of FM patients. Understandably, people tend to be more interested in preventing death than in improving the quality of life. Maybe I should start actually saying what I'm thinking when someone makes this comment. At least it might get their attention.

3. You just need to exercise more.

Often this is another way of insinuating that you're lazy. This comment in particular has always bugged me. Perhaps it's because I used to be a dancer and aerobics instructor. If more exercise were the answer, I'd be all over it. Yes, exercise is an important component of any fibromyalgia treatment plan, but it's only one part and it has to be approached slowly and carefully to avoid triggering a flare. Read Fibromyalgia and Exercise for more information on how to incorporate exercise into your FM treatment plan.

2. But you don't look sick.

This comment puts the FM patient between the proverbial rock and hard place. If we let ourselves go and show how we actually feel, people are uncomfortable and don't want to be around us. On the other hand, if we manage to fix ourselves up and put on a brave face, no one realizes we're sick. If you think about it, most chronic illnesses are invisible. My dad had heart disease but looked great until the moment he died from a massive heart attack. My mom had pancreatic cancer but looked fine. She didn't even know anything was wrong until it was too far gone to treat. She didn't “look sick” until the last couple of weeks of her life when she was confined to bed. Just because someone doesn't have visible sores or a crippling deformity doesn't mean there's not a serious illness just under the surface.

Finally - the number one thing you should NOT say to a fibromyalgia patient:

1. It's all in your head.

This is the all-time worst and most insulting thing you can say to someone with fibromyalgia. I used to launch into an explanation of how FM is a very real physical illness, complete with symptoms, etc. Now I simply say, “You're right, it is in my head. Researchers have found that there is a problem with how my brain processes pain signals.” Enough said."

I hope this article allows you to think before you comment. Fibromyalgia and Chronic Fatigue Syndrome are real diseases. Although the person looks like there is nothing wrong, if you watch, you will notice how they gingerly stand from a sitting position or lower themselves into a chair. You will notice periodically that they substitute a word for another. Their cognitive process works as if the electricity can't get through the line without interruption. Their balance is not as good as it once was. They have trouble lifting a ten pound bag of potatoes. They are always physically and mentally tired. Be observant of your friends with Chronic Diseases, including Fibromyalgia and Chronic Fatigue Syndrome. Your friendship with be better for it.

You can .... be of help to those with Chronic Diseases, ask how

You can .... explain your Chronic symptoms to your friends. If you are like me, you will cry while explaining.

You can .... take a nap today .... do it!

The Butterfly Theory

THE BUTTERFLY THEORY:
Just as the Caterpillar one day had to experience change, had not the Butterfly that was within Embrace that which was to be taking place and Confront the fact that her life was changine and was moving from a slow state to one of freedom and flight, the Butterfly began to Embrace the Change that she needed to Confront, and Challenge the Change in order to Conquer it. Although the Butterfly, just like those afflicted by Fibromyalgia, experienced pain and agony as her body began to take on a new life, things began to change from within, she no longer could crawl with caterpillars, for she now has Wings, Wings of hope, Wings of change, Wings to soar. If life has brought pain to your door and invaded your body, pushing you OUT, EMBRACE the Change, Face and Challenge it, so you may Soar~ Soar high, Soar Fly, Soar Free, my beautiful Fibro~<3~Butterfly, Soar~ @ Veronica Moore

More travel tips

If you are like me, having been diagnosed with one of those "Invisible" disease of the which I am debating as to whether it is invisible or not, because anyone with eyes can look upon the face of one in Debilitating Pain and SEE, the PAIN. Perhaps you have those invisible friends, your other friends cannot see: the "Fibromonster" and her sidekick, "Allodynia", In preparing to travel or just to go to the grocery store I find I needed to take special precautions and measures to ensure that I could (1) keep up (2) Avoid a flairup and the Fog (3) Avoid a major case of uncontrollable pain and fatigue on the journey between point A and B of my trip. It's no easy task and it takes planning and care to manage.

I want to share some tidbits and tips to managing a busy exciting, refreshing and relaxing vacation, without the twins (Fibromonster and Allodynia). Now of course all of us are unique and our diseases are different in the way they manifest in each of our bodies so this is general information that you can tailor to meet your own needs. I'm am all for the easy straight route to the solution of whatever may arise.

(1) MAKE SURE YOU HAVE ENOUGH OF YOUR MEDICATION ON HAND. Plan ahead and be sure that you even take a extra "just in case". You never know if weather or transportation, flat tires, dead batteries, a missed flight, will be a problem and cause a delay in your travel plans. ALWAYS TAKE EXTRA.

Also, NEVER take whole bottle of prescription medications, unless they are your NARCOTICS. Save some smaller old RX bottles or purchase the small plastic baggies (in the pharmacy dept) and transfer what you need and leave the rest at home. That way if there is a situation where meds are lost, you still have some when you return home. Check out the weather channel before you head out, if you are headed for the Gulf coast, are you going during Hurricane season, are you going through the Tornado valley, are you headed toward a place where there is a chance of being snowed or flooded in.

2.) Take extra comfort measures, for example ointments for pain relief, instant cold packs, ThermaCare Heat Wraps or whatever is your preference. There are a variety of wraps for different areas of the body and the heating mechanisms last for a good 8 hours and sometimes more.
Another comfort measure I take is a really good and comfortable pillow and/or blanket that I use at home. (Or purchase an extra one like the one you use at home) For me, this saves A LOT of headache, neck ache and frustration. Having the "right" pillow or blanket while on vacation can make things go much smoother for you and really, it only takes up a little extra space.
Take along extra over the counter medications that will help you feel better on your trip. Who wants the hassle of the ever present overactive stomach, bladder, headaches, muscle tension...etc without an immediate and reachable "buddy" to help you out?

Here's a few favorites from my list, and many others in my Therapy Bag:
A) chewable Pepto-Bismol tablets (or generic version)
B) Dulcolax stool softener (or generic version)
C) Excedrine Migraine (or generic version)
D) chewable vitamin C.
E)Arnica for muscle pain. (You can find it in most health food stores such as Sprouts)
F) chewable Junior Tylenol for the kids. (or generic version)
G) Uristat or a similar remedy for a urinary tract infections (*or take cranberry supplements with you for a daily dose to maintain a natural balance in the body)
H) Band-aids of all sizes AND Friction Block stick by Band-aid. (This product is AWESOME for your feet! I keep mine in my purse to keep my feet from blistering.)
I) Imitrex for Migraine
J)Softee Socks
K)Softee Gloves
L)Knuckles
M)Softee slippers
N)Cool eye pad
O)Favorite music
P)Favorite book
Q) Journal
R)TherapyCow, (my most favorite heating pad)
S)StressFree Bath and Lotion Toiletry items

Some other "buddies" to consider are: anti-nausea medication, motion sickness help, ear plugs, extra eye glasses or sunshades, anti-snoring helps, contact lens cleaners/re-wetting drops, sinus medications, allergy medications, etc...

Keep your "buddies" in an accessible place/bag that is near to you either on the plane or in the vehicle. It takes a lot of stress away when you know help & comfort is an arms length away. It's worth it to have things on hand that you don't have to worry about going out and finding later or when you're in a bind. Get travel sizes and minis so that you're not stuck with tons of bottles and boxes taking up huge amounts of space or putting a dent in your wallet. There are all kinds of inexpensive organizers out there that can easily accommodate a nice little portable way to keep everything easily accessible and manageable.

Keep your clothing and shoe choices realistic with your activity level and body pain management. If you know you're going to need more comfy clothes rather than dressy restrictive clothing, then find stylish but comfortable clothing and shoes to take with you. You know best your limitations. I personally take 3-4 outfits that are super comfy and stretchy because there are days when I need to wear soft and stretchy clothing that I don't necessarily need to button or zip or that allows my muscles to relax. Sometimes a pair of Capris, shorts or sweats and a soft cotton T-shirt paired with tennis-shoes or no heel shoes are just right. The key is to dress in a way that works for pain management but still makes you feel good about yourself so that you can relax and make the most each day and activity. Remember one of my favorite sayings: "Fight for your quality of life!"...

(3) Don't allow yourself to rush, be push too hard, or take on more that you can handle. Remember to listen to your body, when it tells you to stop and rest. Fibromyalgia and the twins: Fibromonster and Allodynia is hard enough to deal with. You have it/them, period. If other's can't or won't accept it, do what you have to do to make your trip comfortable. You may have to pass that game of volleyball or the walk on the beach, but the truth is, you made it as far as you did, remember you have to get back home.

So what about your travel tips and hints, do you have any to share? Post some of them here for all of us to read and take advantage of. I'm always looking for good ideas and suggestions to make fighting for my quality of life a little easier.
you ARE NOT alone. Don't suffer in silence. Find ways to reach out and connect with others who are going through what you are going through. There is strength to be found in the understanding of another who shares your situation. (((HUG)))

Have a blessed, stressfree, flare free, safe trip and by all means, have fun!