Who’s In Charge? You Or The Doctor? Seven Ways

Posted on May 6, 2015 by Troy Wagstaff

Who’s In Charge? You Or The Doctor?

When you are chronically ill with something like fibromyalgia and other similar invisible diseases, your doctor can be your best friend or worse nightmare. Your health is like a roller coaster and the doctor is like the operator of the roller coaster. He can control the ride and make it a pleasant one, or if he is thoughtless or careless he can make the ride a nightmare.

You need the best doctor(s) you can find. You are the manager of your team of doctors. Seldom, can a fibro patient get by with one doctor. You need other doctors even if you only see them once or twice a year. There are so many contradictory side affects that you occasionally need to see other doctors so you know that your symptoms haven’t turned into some more than a fibro symptom.

A good example would be the pain in the area of your ribs and sternum. The pain during a big flare up can make you think you are having a heart attack. You need to see a cardiologist on a regular basis like every six months or every twelve months depending on the counsel of your cardiologist.

fibro_whosthebossThis way if your EKG, blood pressure, heart rate and cholesterol levels are known to be good then you can have some confidence when you have a flare up in the sternum area. If migraines are a chronic problem then you should have a neurologist on your team of doctors. You get the point. You need to look at your symptoms every so often to make sure they are still related to fibromyalgia and not anything else.

It is so easy to blame everything on a fibro symptom. But that is bad fibro management.

Since you are the manager of a team of doctors, that makes you the boss. This answers the question “who’s in charge? You or the doctor?” Since you are the manager you are the boss. You can hire or fire your doctor which is one way to can exert your power over them.

I know that there are likely many fibro patients who live in remote areas and may not have easy access to a full team of doctors but you still need to play an active role in your health care and not just take what the doctor says at face value, and this goes for everyone.

A doctor goes to medical school and then specializes in a type of medicine then he goes to work. He keeps up some of his education by annual training classes and by reading medical journals.

But that doesn’t always keep your doctor up to speed on the every changing world of fibromyalgia.

Your own personal education is part of the responsibility of being in charge.

Some people might take issue with my point of the patient being in charge and not the doctor. After all, the doctor is highly educated and trained. Your doctor controls your access to medication and therapies. This alone would make people think the doctor is in charge. But that just isn’t always the case.

How to be in charge of your health and team of doctors.

Seven ways to be in control of your medical health.

1. Come to the appointment prepared. Write down all your questions and review them in the waiting room and be well prepared with those questions.

fibro_whostheboss12. Take notes while in your visit with a doctor, especially if you have fibro fog.

3. When the doctor prescribes medicine ask if the new drug will react negatively with the meds you are already on. They should know, but they can still overlook your prescription medication history. Over the years I have asked that question and there have been four or five times that a doctor stopped and looked at my list of medication and actually changed the medicine. It doesn’t seem like they would overlook that aspect of your visit but they are human and they make mistakes.

4. Don’t be afraid of them, speak out and tell them what you think. Don’t be intimidated by their advanced degrees. This is your body and your life. Ask questions and tell them what your thinking. If this is a problem with your doctor and he doesn’t like it, go to another doctor.

5. Remember that in spite of their advance degrees and training they are human and they make mistakes.

6. Don’t let doctors push you around. I’ve waited as long as six hours for one doctor and I quit seeing him after the post op check up. I’ve waited for hours to see doctors before only to hear them say at the end of the anointment, “I’m running late and I need to get to my patients.” I held my ground and told him I’m not through. I have also made statements such as “I waited for two hours and now it is my turn.”

7. If your doctor is a jerk, fire him or her and get another doctor. Your life and your health are too important to be blocked at every turn by an uncaring doctor.

You are the manager of your health care team and your client (you) is very important. Be the boss and act like the boss because you are the only one who can really manage your health.

Troy Wagstaff ©

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Fibromyalgia Poem Fibro-Awareness: The Disease Destroying Me

Posted on May 4, 2015 by Troy Wagstaff

The Disease Destroying Me

Do I look sick and tired to you?
Do I look so worn?
Do I look miserable?
Beaten, broken, torn?

Or is my face still smiling?
Is my complexion clear?
Am I made up and dressed up?
Am I full of cheer?

Have I become so good at hiding
That you no longer see
The pain with which I’m living,
The disease destroying me?

the_disease_destroying_me_poem

This poem about fibromyalgia being an invisible disease called The Disease Destroying Me is used by permission by N.J. Gatehouse, the author of this poem.

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Who Is The Boss? You Or Fibromyalgia?

Posted on April 28, 2015 by Troy Wagstaff

Who Is The Boss? You Or Fibromyalgia?

If I asked the question “who is boss? You or Fibromyalgia” to the general public, who is the boss between you and fibromyalgia? The positive thinking, well-intentioned people would likely say, “you are.” If you have Fibromyalgia then you know there are days when fibro is boss. Just as sure as the sky is blue, fibro is the boss during fibro flare ups and during bad weather or during a cycle.

So I ask again, to my fellow fibromites, who is boss, you or fibro? I would like to know from fibromites who have this illness what they think about this question? Here is my answer to the question.

Let’s compare fibromyalgia to a long season sport like basketball or baseball. The season is long and it requires a lot of management from the personal player’s standpoint all the way up to the manager or coach of the team. They both are endurance games and seasons. As a coach, you know that players are going to have a bad game every so often, but you don’t bench him on that alone. You look at effort and overall contribution to the team. You cut the player some slack during a down period, and give him some special attention or training needed to get past the dry spells.

You can’t judge the season by the performance of a week here or there, you have to take it in its entirety.

So what I am getting too is the Fibromyalgia is a situation that needs to be managed as opposed to an illness to beat. Try all you want with your pharmaceuticals, diet, sleep, therapies, exercise, and positive attitude, there will be times that, in spite all of that you have done managing your chronic illness, a flare will come. It may be in a few days, a few weeks or if you’re lucky, it might not come for several months. But that flare up will come as sure as the sun rises each day, the flare up will come.

There may be times when you feel like you’re winning and there are times when you feel like you’re losing. But if you keep the managers’ mind-set in the battle against fibro, you can enjoy the good times more and pass through the bad times easier.

who_is_the_bossIt’s not easy to manage something as complex as fibromyalgia, especially if you have fibro fog. I wouldn’t say I am the best manager of the illness but I’ll tell you what I do to try and manage my illness.

I have advocated in a few of my articles the use of a journal. I am not the best example of journal writing but I have done it, I am doing it currently, and I’ve done it enough to know that it works quite well. Journaling helps you remember what your symptoms were on a given day. It reminds you what the doctor said. It reminds you about lessons learned by trying various activities.

There are a lot of things we can’t do with fibro and there are a lot of things we shouldn’t do with fibro, but everyone is different. I still want to live as much as I can so I do things, not crazy things, but I do them knowing I will pay for it in the coming days or even maybe weeks. I know I am going to be sore and sick anyway, why not have some fun on the rare chances that come my way to do something out of the boring, ordinary daily grind. I record what I did and how I paid for it. I forget a lot of things because of fibro. I try to record weather conditions and how I felt when certain weather comes along. I use my journal to keep track of certain medicines.

Journaling is fantastic emotional therapy because you can usually express yourself to a journal better than to anyone else. With a journal you can look up in the past and see what you did and how you paid for it with an increase of symptoms or you can compare weather patterns and how it affects you. Best of all, you can remember your past in as much detail as you put into your journal writing. You can also use your journal for keeping track of questions for health care professionals and their answers.

I tend to ramble on in my posts so I will wrap this one up as an introduction to how to manager Fibromyalgia. In this case using a journal is a great way to manage Fibromyalgia. There are several other ways to manage this sickening illness we know as fibromyalgia and chronic pain. Let me know by way of comments to this post what ways or what methods you use to manage your fibro.

Dealing with the question, of “who is the boss? You or fibromyalgia?” I don’t think it is a good approach to think of dealing with a chronic illness in terms of winning or losing but rather think of the battle with fibro as something to be managed.

Troy Wagstaff © Copyrighted

Look for at least three or more posts on how to manage fibro in the near future.

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We Are Not Hypochondriacs . . . But Maybe We Should Be?

Posted on April 24, 2015 by Troy Wagstaff

We Are Not Hypochondriacs . . . But Maybe We Should Be?

Fibrochondria

There’s always something to say about Fibromyalgia which speaks to the complexity of the disease. There’s always some new information coming out, not always helpful but sometimes that information is a gold mine. There is a lot to talk about when discussing fibromyalgia from fibromite to another.

That is where this article comes into play, discussing fibromyalgia from a fibromite who has more than thirty years of the disease under his belt to another fibromite.

This article is about “Fibrochondria.” What is Fibrochondria? It is a play on words obviously. It comes from fibromyalgia and hypochondria combined. To those with fibromyalgia, that may sound disturbing, but bare with me. Fibrochondria is the need for a diagnosed fibro patient to not confuse new or different symptoms with those symptoms that are known to come with fibromyalgia.

Consider this scenario: You have had fibromyalgia for seven years and by now are well versed in the symptoms you have. Of course you have the chronic wide spread pain and the fatigue but you’ve never noticed in seven years any symptoms related to memory loss or cognitive issues. Then you start to notice you are becoming forgetful. You walk into a room and forget what your looking for. Everyone does that, but in your case it’s happening way to often. All of the sudden you start forgetting words you know that you should know. You can describe the meaning of the word but can’t think of the word. This can come up in a mid sentence. You are forgetting names way too frequently. Other types of memory and cognition problems blur your mind.

You take a look at the symptom list of Fibromylagia and see fibro fog. You look into it a little more and decided that these symptoms are just another part of fibromyalgia. At least, now you know why you are having these troubles. We know that there is no know cure for fibro so you take a deep breath and forge on. At least now you know why you’re having memory troubles . . . or do you?

fibrochondria_1This is a big mistake to assume that the symptoms you are having automatically fall under fibromyalgia. It is very possible that what you have is fibro fog but it could also be a number of other issues with your brain. Don’t assume that a symptom you are having is part of fibromyalgia just because it is on the symptom list. Few fibro patients have every single symptom on the list. It is entirely possible to have just wide spread chronic pain and nothing else. Therefore, you should talk to your doctor first before jumping to conclusions.

We need to be hypochondriacs over every new symptom until we know if it is yet another fibro issue or something else. What I mean by that is that we need to keep on top of our health because we are chronically ill. If we can treat the new symptom then that is one less thing to worry about. So, if a new symptom presents itself, go get it checked out. If the symptom is something else, it could get worse.

I can relate to this. I have had bouts of lightheadedness and extreme fatigue many times over the past years but recently I was going through those symptoms again only it didn’t make sense. My CPAP was properly adjusted, by lungs and heart were both great. I had over come secondary pulmonary hypertension. My heart was healthy and by blood pressure was excellent. I was so fatigued I just needed to sleep. I wasn’t ‘fatigued tired’ but rather ‘fatigued sleepy’ in the extreme. I couldn’t shake the dizziness and lightheadedness and I played with some nausea. A time or two I thought I would faint so I quickly sat down and breathed slow and deep.

I went to the doctor to discover my heart rate was down to 45. The doctor put me through four various tests on my heart and lungs. Two tests were over night tests. I ended up with the Cardiologist telling me my heart is healthy and “looked great.” Since he didn’t want to rush into a pacemaker he instructed me to monitor my heart rate and blood pressure for six months and then go see him. They verified in two of the test that I was running a very low heart rate which, with one test got down to 36. My blood pressure continued to be excellent. All of the other tests “looked great” with one exception which was my cholesterol. It was a little high and since it was caught early I could easily manage it without meds.

As fibro patients we are sick of the term hypochondria because many health care providers have called us that or at least insinuated that we are making up symptoms and sometimes some fibromites have been accused as attention seekers from doctors.

To bring up the term hypochondria is treading on water, but it is something we have to consider. Not all symptoms that match fibro symptoms are fibro related. A single symptom could apply to hundreds of illnesses which is why we must be ever vigilant in determining if new health problems belong under the fibro umbrella or are their own illness or a symtpm of something else. We need to be fibrochondriacs.

Using the word “fibrochondria” is just to introduce a little levity in a despairing illness. This article is just my own opinion and in no way medical advise. Before doing anything that could affect your fibromyalgia or any other health issues always consult with your health care provider.

Troy Wagstaff © Copyrighted

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Thankful For Fibromyalgia

Posted on April 24, 2015 by Troy Wagstaff

Thankful for Fibromyalgia

Today I had an epiphany. I felt it in my heart for the first time. I am thankful for having Fibromyalgia.

As Christians we are taught to trust in the lord which means that we gratefully accept the outcome of his divine will. If we say, we are “leaving it in the hands of the lord” we are also saying that it is okay for whatever outcome to happen.

thanks_for_fibroIn my case it has been thirty-one years of Fibromyalgia and numerous other health problems and family health problems that I have been called on to endure and deal with. I am grateful for all of that. Intellectually, I knew it was the Lords will but I have not completely felt it in my heart until today.

There have been countless miracles along the way of my fibro journey for which I am thankful, thankful from the heart.

We can know truth in the mind and we feel truth in the heart, the heart is where the Holy spirit touches the soul.

Today, April 24, 2015 is the day I can say, I truly am thankful for my health problems and especially the leader of the pack, fibromyalgia. I know that it is the will of the Lord for me. I know there are other things to learn about my health and my families health issues, but for now, I know I am where the good Lord wants me to be.

Troy Wagstaff

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31 Tips For Traveling With Fibromyalgia

Posted on April 6, 2015 by Troy Wagstaff

31 Tips For Traveling With Fibromyalgia

There is a lot to consider when traveling with fibromyalgia. In the Traveling with Fibromyalgia Part ,1 I covered some of my experiences of traveling in a car. Road trips are doable with the right preparation. Any travel is possible for a fibro fighter with proper considerations and planning.

This time, I am going to write about experiences and lessons learned about traveling by air plane. In addition, this article talks about traveling in a larger group. My last vacation was just me and my wife on a road trip to Yellowstone. The size of your traveling party can be a important consideration. I hope my experiences help other fibro fighters in their desire to travel.

This trip was flying to California with family and friends. I went on this Disney Land vacation with my wife, Colette and two of our three daughters. One of my daughters was accompanied by her best friend. My wife’s best friend also flew out with us. She was on vacation with us and finished her vacation by going back to California with us and then went home a few days later to northern California. My youngest daughter met her best friend at our hotel. She had moved to California a year previously.

Wendy, our California friend, suggested I request a wheel chair at the airport. We thought that was a good idea. It wasn’t. Because of the wheel chair we boarded first. That was nice but no big deal. When we arrived at Long Beach we got off last. No big deal. Going through security was a huge deal. Because I was in a wheelchair, I didn’t have to go through the metal detector but the pat down very invasive. If someone would have done that without a uniform it would have been sexual assault.

Getting off the plane in Long Beach wasn’t so bad. They have a very small airport so I could have easily walked around. In future airplane trips I declined the wheel chair at the airport. It was more effort than it was worth for me. Lesson learned.

There were in all, seven in our party for the first few days. The last half of our vacation was five of us. At first glance, traveling with a large party sounds daunting for a fibro warrior. It wasn’t at all bad. In many cases it turned out very good. Everyone had someone to be with which took off pressure for me to be out and about. They wondered how I could have fun without going at the hectic pace they were going. It suited me fine. I really could take my time and not interfere with anyone having fun.

Let’s start from the beginning. While planning our vacation we applied the lessons learned from the trip my wife and I took to Yellowstone. We didn’t over plan activities. Our hotel was literally right across the street from Disneyland which was the main focus of our trip.

We got five day passes so we could come and go to Disney Land as we pleased. My daughters had their friends, my wife had her friend and I had a couple of books and my laptop. Our hotel didn’t have private hot tubs but they had an outside hot tub by the swimming pool. I brought sun screen and a couple of books so I wouldn’t get bored. I wish I had brought some videos or DVD’s. Streaming wasn’t what it is today. Lesson learned.

We like to get our moneys worth but when planning we realized I may not use my pass to Disney Land five times but that was part of managing expectations. I ended using it three times which was just about perfect for me.

31_tips_for_travelling_with_fibroMy wife and I knew about my situation and the need to manage expectations. We told our kids about the expectation concept and they didn’t seem to care since they would have friends along and it was established that they would be on their own in Disney Land most of the time.

When we could, we would eat lunch and dinner together. Everyone would get up and go the continental breakfast early in the morning. I slept. I’ve never understood why people on vacation want to wake up so early. Among other things, vacations are a time to relax. Even more so when traveling with a chronic illness.

I would get up and eat enough to take my meds. With no rush, I would get ready for the hut tub. I spent one or two hours in the hot tub each day. Sometimes I would get lunch from the hotel restaurant. Thank goodness for cell phones. After lunch I would call my wife and we would plan on where and when to meet at Disney Land.

I couldn’t go on many rides. This trip was four or five years ago. I don’t remember many rides I went on but I do remember what became my favorite ride, it was in The California Adventure park across from Disney Land. It was called California Dreamin’. I went on that ride five or six times. I got the sensation of moving but not fast and jerking. There was no spinning, it was smooth.

We were told my several people who had been to Disney Land recently that you could rent wheel chairs and motorized carts. On the first day I went to Disney Land I went to the rental place and found that they were out of carts. I decided a wheel chair would be better than walking. I was wrong.

While It keep pressure off my feet, it put a lot of wear and tear on my arms, neck and shoulders. Wendy and Colette ended up pushing me around the rest of the evening. Luckily, the rest of the trip I got a motorized cart. Lesson learned.

The single most important detail of that trip was the use of motorized carts. It was great. Not only did I get around easily, I meet several other disabled people and about half of them also had fibromyalgia. We would talk about what rides were good to ride and what rides we should consider avoiding. Whoever was with me got to go to the head of the lines on every attraction.

My wife has neuropathy in her feet from two types of chemotherapy and diabetes. She saw how great the carts where and decided to rent one on her last couple of days at the park. Some of our fun at the parks was racing each other.

Later we went to Knots Berry Farm. It was small so our late arrival didn’t matter. We also went to a restaurant called medieval times that was near Knots Berry Farm. That was fun but that day with two major venues was exhausting and our only real scheduling problem.

On our driving around from place to place or at the end of the day we would go to the beach. It was the last couple of days in October and first few days of November. The water was cold but the sights and sound of the Ocean were spectacular.

I spent a lot of time resting and soaking in the hot tub. I spent most days with the tens machine on my back. I slept on my heating pad. Don’t worry, I have a great heating pad with a lot of settings including a built in timer and a built in maximum temperature.

Because we learned and applied our ‘lessons learned’ from previous traveling we made this trip more enjoyable and less physically draining.

We flew home late in evening. Getting home late at night was tough but it seems impossible to make every aspect perfect for an illness that is unreliable. I took about three or four days recuperating.

Lessons learned from this trip were:

For me, the wheel chair at the airport wasn’t worth it.

The wheel chair at Disneyland wasn’t worth it.

The motorized carts were well worth the money.

We also learned that there are rentals in the Disney Land area that will deliver motorized carts to your hotel door and they cost less than Disney Land.

Even though you plan on rest time and have a low key itinerary there will be days that you over do it.

You can’t schedule good days and bad days with fibromyalgia.

From my personal travels which aren’t much and through the experiences of others with fibromyalgia at the Fibro Family Christian Support Group on Facebook, here is an extensive list of things to do and things to consider taking with you when traveling with fibro.

1. Don’t be negative but know your limitations.

2. List of medications.

3. List of allergies and a list of illnesses and which meds are used for which symptoms.

4. Take three extra days of medicine.

5. Manage your own expectations.

6. Manage others expectations.

7. Plan ahead for things you may need like an electric scooter or wheel chair.

8. Plan for the flight, the check in time, and security lines. Give yourself more time than you normally would.

9. Consider what is realistic when planning your vacation.

10. Always consider hot tubs.

11. Always plan for rest time.

12. Heating pad.

13. A convertor.

14.Tens unit.

15. Make sure to get up and move around every couple of hours or as needed for your situation

16. Pace your self.

17. Know your limits.

18. Don’t be afraid to stop and rest as needed.

19. Generous use of pillows if needed.

20. Dramamine

21. Preparation. But remember that with all the preparation you make you can’t plan for rough days or flare ups.

22. Extra money.

23. Small squishy pillows.

24. Pics of pill bottles.

25. Plan on rest days.

26. Good reading material.

27. A handicap parking placard.

28. Anticipate med. refills before you travel. I use Wallgreens which gives me access to my pharmacy records and refills if I mess up with my medications.

29. Prayer.

30. Bible study

31. DVD’s – Videos

Troy Wagstaff © Copyright, All right reserved.

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22 Items For Your Fibro Emergency Go-bag

Posted on April 4, 2015 by Troy Wagstaff

Fibro Emergency Go-bag. Fibro Awareness

In my youth I was a boy scout. I enjoyed the camping and activities but I didn’t advance very far in rank. I did learn something that has stayed with me ever since, it was the concept of being prepared. When you have fibromyalgia or other chronic invisible diseases, you are limited to what you can do. But there are times when you must act, no mater had badly you feel. There are times when, in an emergency, you have to pick yourself up and go and do. You have no choice. I realized that in spite of my poor health, the world didn’t stop for me. There were times I had to get up and go tend to an emergency. It took a few ER visits to learn this valuable idea. The idea is a fibro emergency go-bag. There is nothing like a five-hour ER visit with uncomfortable surroundings and furniture to make your chronic pain worse. The go-bag is a back pack or big purse that has things in it that you can grab in a hurry and go. The idea is, that the list is checked off and the items are in your bag ready to go in an emergency. I’ve had many opportunities and countless hours to refine this idea. It’s been tested and I am grateful that I had it. I’ve been through about 15-20 ER visits with my daughter and her pseudo tumor cerebri and about12 surgeries. My wife has had cancer twice and countless procedures, chemo, radiation etc. I’ve even used the bag for my own doctor visits. It’s all prepared and ready to go. I don’t know how long a new doctor will take so I go prepared. Grab the go-bag and I’m ready. So I got a back pack and filled it with various things. I usually over prepared my bag and it got a little heavy but I was never bored again. Besides activities I realized the need for some comfort items as well. I made a list from my experience of things that have proven to be helpful. It is modified for women as well. 1. Extra Cell Phone Battery 2. Cell Phone Charger 3. Two day’s worth of all your meds 4. Earphones for your cell phone 5. Book(s) to read 6. A notepad 7. Pen or pencil 8. Med. List 9. Medical History 10. Scriptures 11. Food, at least enough to take your meds. Protein bars or energy bars 12. Bottled water 13. Cards or some other small game 14. Emergency money other than what you have in your wallet. 15. Small comfy pillow 16. A small blanket 17. Pair of comfy socks 18. Tens Unit 19. Heating Pad 20. Reading Glasses 21. Personal female items 22. A few DVD’s fibro_emergency_prepThese items are only designed for bear minimal comfort and emergency medical items like your meds. The idea isn’t to take your bedroom with you but just enough to make a seven-hour ER visit as pleasant as it can be with fibromyalgia. In my case I’ve used it for many ER visits and I’ve used it for when I would have to wait up at 4:00 a.m. to get my daughter to surgery by 5:00 a.m. I didn’t have to do anything but get dressed and grab my bag. I have my pills and some food already in the bag. I can take my meds on schedule regardless of what the Café hours at the hospital are. This go-bag has helped a lot. Several times when we went in for early morning surgeries, we would not return home until ten or eleven at night. That bag made a big difference. I will explain my logic for these items. As you read this article make a note of what sounds right for you. If there are things you think of that I have not mentioned then write them down in your notes and leave a comment for me. Others may like your ideas as well. Item’s four through ten can be found on a smart phone which makes items one and two very important. An extra cell phone battery can be a life saver for a smart phone. You don’t always have access to a wall outlet to keep your battery fresh. So if you run the battery down then add the spare battery. Whenever possible, keep your cell phone charged. I like having two days worth of essential medications because I wonder, what if I have to spend the night at the hospital? I want to be prepared. Or what if your emergency is in bad weather and you get stranded over night. It sounds paranoid but with fibro pain you cannot afford to take matters lightly. Ear phones are important because you can’t play your itunes in front of a bunch of strangers. Music can be soothing when you’re stressed so don’t be stuck with a great play list and no way to easily listen to it. A smart phone can enable you to read ebooks and scriptures, listen to music and watch streaming videos. But if you get bored or get eye strain with the digital screen then a traditional book may be a welcome change of pace. The idea here is to keep your mind off of uncomfortable situations and hopefully help manage pain by not dwelling on it. A notepad and pencil might be nice to have to keep notes about what’s going on. There are many good reasons for these two items in your fibro bag. However, a smart phone can serve that purpose as well. Why would you need a med. list and medical history if you are responding to someone else’s emergency? You never know. When you’re in a lot of stress things can happen. Med. lists and medical histories are something you should have with you whenever you go, anywhere, all the time, just in case. I like having scriptures with me because when I am in a stressful situation like and ER visit or waiting for an operation, I find it comforting to read some from the scriptures. This could also be on your smart phone. You’re not going for a hike but I found it good to have a little food and water in case I was in an awkward situation and needed to take my meds. I have a few protein bars and one or two bottles of water. I also like having a few dollars in my go-bag in case I don’t have any in my wallet. Vending machines around here don’t always take a debit card. Items 16-19 are items for comfort like a special pillow you may like, a soft pair of socks are nice if you need to sleep during the day. A soft familiar blanket helps to make you feel at home or more relaxed. A tens unit and heating pad have saved me more than once. If I have a flare up, which is common in stressful situations, there is nothing better than my heating pad. None of the reading material and none of the non telephone aspect of your smart phone will do much good if you need reading glasses and don’t have them. It took a while to think of DVD’s That item may or may not be a good idea for you. For me, it was a good idea because most of the hospitals around here have TV’s and DVD players. Sometimes you need something else besides reading to relax. It’s not on the list, but making a reminder note and putting it somewhere obvious in your go-bag is a good idea. This note should be a reminder to get up and move around at least once an hour. Move, walk and stretch every hour as needed to reduce stiffness and getting more sore. Troy Wagstaff © Copyright, All rights reserved.

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Traveling With Fibromyalgia – 7 Lessons Learned, 6 Things We Did Right

Posted on April 2, 2015 by Troy Wagstaff

Traveling With Fibromyalgia – 7 Lessons Learned, 6 Things We Did Right
Doing anything with fibromyalgia is hard. Getting in and out of the shower takes a lot of energy. Going grocery shopping is exhausting. His work such as laundry, dishes, vacuuming is difficult, sometimes downright impossible. So if doing these ordinary daily activities is so difficult, why would anyone with fibromyalgia consider traveling?

Many who suffer from fibromyalgia don’t travel. I don’t blame them at all. There were many years when I was one of them. I didn’t have the energy or the right medicines to manage my illness, let alone travel. The chronic pain, chronic fatigue and fibro fog of fibromyalgia feels like it is sucking the life right out of you.

In the last four or five years, after spending six or seven years trying different medicines and therapies, I am at a stage where I can manage my illness better, at least until a flare comes up. While I have traveled some since fibro came into my life, I still don’t travel as much as I would like or as much as my wife would like.

However, I have been able to travel on occasion and I want to share some experiences about traveling with fibromyalgia and hopefully others can learn from my experiences, good and bad, and have better vacations as a result.

When people go on vacation, they do so to leave their work and stress behind. The Fibro traveler doesn’t have that luxury. That includes the pain, the fog and fatigue. We can just leave it at the office or at home and take a vacation from our illness. We have to take our illness with us.

travelling with fibroThe first trip I took after my Fibro became advanced was with my wife, Colette to Yellowstone. I think that trip was about five years ago. She made the initial plans and before she booked anything we went over what she wanted to do and what I thought I could do. It involved give and take on both sides, but most I did the giving and taking.

We compromised, mostly she compromised because I had to scale back a lot of her plans, according to what I thought I could do. It involved a lot of driving the first day, the days in the middle were much less driving and the drive home was divided in half. We drove half way home, then stayed in a Hotel. The next day we drove the rest of the way home.

It was five nights and six says all together. The first day we saw a lot of beautiful Idaho farm country and wilderness. This was a learning experience because we drove too much the first day, but had to get to our motel because of reservations. With the help of a tens unit while in the car and a heating pad in the hotel room I did it well enough. It wasn’t perfect, but it went well enough. I did have a certain amount of adrenaline going on, which helped to a point. My legs and hips were strained, stiff and sore.

The first mistake so far was in driving too much the first day. The second day we made a mistake by not staying to our schedule. We asked the locals at the motel what some cool sites were in the greater Yellowstone area that the typical Yellowstone tourist wouldn’t see. They told us about some waterfalls on the Snake River.

It sounded great. It was a great stop for nature lovers, but it was off the travel plan we had made. In my adrenaline induced ambition, I walked far too much including several flights of stairs built on the side of the gorge.

When we got to our Yellowstone cabin, we were late again. I was extremely worn out. So much so that I couldn’t even drag a small suitcase into the Cabin. All our luggage had wheels except for a couple of backpacks. I managed to carry my CPAP machine and my laptop into the cabin. The manger of the cabins carried a great deal of our luggage, thank goodness.

I soaked in the very hot, hot tub that night. It was nice because we were deep in the country and the night was very dark and the stars were very bright. The next day was a planned day off for relaxation and recuperation. I soaked a few times in the hot tub and rested. The cabin rental had a nice restaurant twenty yards away. I didn’t do anything all morning, but rest. During the afternoon I started feeling restless. I was still tired and sore, but I was also bored sitting around. Should have brought some DVD’s or books to occupy me while I rested.

Off we went to places closer than Yellowstone. We saw some wonderful things like the headwaters of the Henry river which is one of two sources of the Snake River. We returned to the cabin and I was worn out, but not exhausted. I soaked in the hot tub.

The next day started in the hot tub which is a great way to loosen up along with a hot shower. We finally got to Yellowstone. Saw some big Elk in the distance. We saw a Buffalo walking on the side of the road. We saw a lot of wildlife but no bears.

When we were in the car for more than an hour, I used my tens unit. That really helped the back and neck, but my legs always got very stiff and sore. We spent two days in Yellowstone, I think. While we were in a small town in Montana, I think it was called Yellowstone, my wife went shopping alone. I did a little shopping but mostly I sat at a table with a soda pop and rested. Then we left for home via a hotel half way back. That was the best decision we made while planning our vacation.

Because of the ability to really rest on the way home, we were able to stop at a wilderness drive through park. We drove through the park slowly with our windows rolled up. We saw up close a lot of bears, a wolf, deer and an albino elk among other animals. I was very good at taking all MEDs right on schedule. When we got home, I was completely worn out. I spent four or five days in bed (bed for me is my recliner). It took that long to get back to my normal sick self.

Seven lessons learned from that trip are:

1. I did more than I thought I could, but I still did too much.

2. Drove too much the first day.

3. Didn’t stay on the schedule.

4. Hot tubs are essential to loosen up quickly in the morning and relaxing at night.

5. Did not take rest stops to walk around. That is very important on road trips.

6. Tried to manage expectations, but didn’t do as well as we should have. We did learn from that trip about managing expectations that we applied to future vacations.

7. Get a stronger convertor. The stronger the better.

Six things we did right that saved the day:

1. Allowed for recuperation time. I should have used it all.

2. Tens unit was very helpful.

3. The heating pad was very useful in the hotels and cabin, but the converter wasn’t strong enough to get the heating pad hot enough in the car.

4. Went on the first trip without kids. This was as much a learning event as it was a vacation.

5. Took a couple of days worth of extra MEDs. Didn’t need them, but It was good to have them.

6. Planed for extra money not included in our vacation budget. In case I needed something I forgot and couldn’t do without. We used some of it.

This was my first fibro vacation. I was glad I went and I have great memories. If you haven’t taken a vacation since you came down with fibromyalgia, I would recommend a small vacation and plan for it not to go as planned. Keep expectations low and you should be fine. Make it a small, test run vacation to learn from. Consider a day long road trip or a one night test vacation for the experience of it.

To answer the question posed at the beginning, why would anyone with fibro want to travel? I would answer the question by saying that we want to be as normal as we can. We want to see new things and have adventures just like anyone else. We know that some vacations are impossible for a fibro patient to do. But sometimes you can rest and sit and still see new sights and hear new sounds and be refreshed by a change of pace. We want to get away from it all as much or more than most. With a little foresight and planning, many types of vacations are possible.

Troy Wagstaff © Copyright, All Rights Reserved.

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How to Reinvent Yourself With Fibro . . . Living an Eventful Purpose Filled Life

Posted on March 27, 2015 by Troy Wagstaff

How to Reinvent Yourself With Fibro . . . Living an Eventful Purpose Filled Life

I have had fibromyalgia for more than thirty years but the past eleven years have been debilitating and outright paralyzing. Because of how sick I became my blogging became erratic and eventually a burden. The first twenty years of fibromyalgia were diagnosed as arthritis. The illness had taken a severe turn for the worse and my health deteriorated very fast. I wrote a non fiction short story about my 31-year journey with Fibromyalgia that goes into the details of my illness and the myriad of symptoms.

I finally got the right doctors, the right diagnosis and my symptoms stabilized and in some cases improved. I was in a position to manage my condition to a certain extent. I have chronic fatigue, chronic pain, fibro fog which is a term used to describe issues related to the brain, memory and cognition. I have flare ups of various symptoms quite frequently. Living with fibromyalgia is like riding on an out of control roller coaster with no end in sight. There are occasional lulls in the ride and then there are unexpected sharp turns which are the fibro flares that occur frequently.

To make a real long story a little shorter I found out, through one of my pain doctors that writing, of any kind, is good physical therapy for the brain, similar to learning a foreign language. Any type of language art is good therapy for the brain to help maintain or regain memory loss and improve cognition.

reinventing_yourselfWhen my doctor knew, I was blogging and writing she said that I should do it every day as physical therapy for the brain. What started as a hobby became a type of therapy for dealing with fibro fog.

Part of my non fiction writing, deals with my experiences with fibromylagia. I write fibromyalgia posts to add to fibro awareness. I maintain a list of topics to write about regarding fibromyalgia.

One such topic was reinventing yourself after your life has been turned upside down from the terrible illness. I have reinvented myself with writing. I have been a published writer of technical articles in the defunct WordPerfect magazine more than 25 years ago. I have done on again off again non fiction writing through the years.

My personal re-invention is in the form of writing both non fiction on my blog CallahanWriter.com and fiction writing.

I came across a writing contest sponsored by Positive Writer and the topic was how writing has positively influenced my life.  In spite of my fibro fog the serendipity was not lost on me. This article was destined both to touch on the reinvention of my life as a fibromyalgia patient and to show how writing has had a profoundly positive effect on my life. Writing allows for self expression regardless of the genre. It also gives me good therapy and gives me a new identity as I seek to reinvent myself through writing.

About five or six months ago I got an itch to try fiction writing. I got hooked. Now I continue to write non fiction, as well as fiction. I have added a couple of short stories on my blog and will continue to do so. I am at various stages of two novels, one a historical fiction and the other fantasy.

As I have become much more serious about writing, I have seen some improvement in my memory issues. It will be a slow process. I have something meaningful to do each day which gives me a purpose. When you’re very sick over a long time, you tend to feel your life has no purpose. Writing gave that back to me.

For me, writing is the difference between a deep dark pit of despair and having daily hope. This is very important to the chronically ill. Writing a short story or a book will last many lifetimes and be a testament to my effort. Any kind of writing can be therapeutic from journaling to creative writing.

Writing is a way to express yourself. You don’t need to publish to be a writer. All you need to do is “take pen to paper” and express yourself. It can be therapeutic on many levels and it is a great way to live a legacy behind.

I needed to reinvent myself since I can no longer do what I used to do. Writing has been a gift to me. I can write when I feel good. I can sit on my recliner with my computer on my lap and write until I need a rest.

Writing is a way to bring something beautiful and positive out of something so insidious as fibromyalgia. Writing has been my rebirth. It has given me a sense of purpose and it gives me a reason to be excited about waking up in the morning. Writing fiction gives me a chance to create characters that can do things I can no longer do. I can live my life through my characters.

And to top it all off, I am getting physical therapy done for my brain. Writing is possible for anyone with an imagination and the ability to dream. I may only write an hour here or thirty minutes there but by the end of the day I might have a few hours of writing done. I have a purpose in spite of my severe limitations because of writing.

Troy Wagstaff ©

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A Song Dedication To Fibro Awareness – We Are The Champions

Posted on March 18, 2015 by Troy Wagstaff

A Song Dedication To Fibro Awareness – We Are The Champions

Dedicating ‘We Are The Champions” by Freddie Mercury to Fibro Awareness

Fibro Awareness words in (parenthesis)

I’ve paid my dues
(Chronic muscle pain, muscle spasms, or tightness)

Time after time
(Day after day, hour after hour, minute after minute, with no end in sight)

I’ve done my sentence
(Moderate or severe fatigue and decreased energy, Insomnia or waking up feeling just as tired as when you went to sleep. Stiffness upon waking or after staying in one position for too long)

But committed no crime
(I didn’t ask for this, I didn’t go looking for it.)
And bad mistakes
I’ve made a few
(Doing things I knew would hurt the next day)
I’ve had my share of sand kicked in my face
(Well meaning people or family being insensitive or lack understanding or empathy)

But I’ve come through
(I’m still alive and fighting)

And we mean to go on and on and on and on
(We intend to see a cause and cure and hold on with hope)

We are the champions – my friends
(We will not give up hope!)

And we’ll keep on fighting Till the end
we_are_the_champions_fibro_awareness(It’s not in us to give up, we are fighters to reclaim some sense of our former self.)

We are the champions
(We are champions for not giving up hope.)
We are the champions
(We will no longer be ignored by the medical establishment!)

No time for losers
(We have no time for negative people in our lives. We try to stay positive in the midst of pain. We need positive attitudes around us more than ever)
‘Cause we are the champions of the World

(We will be the champion of the world when everyone that suffers from fibromyalgia will have medical help and a cure.)

I’ve taken my bows
And my curtain calls

(Our bows and curtain calls will come when they know what causes fibromylagia and have a cure or better treatment)
You brought me fame and fortune
And everything that goes with it
I thank you all

(We thank everyone who has supported us and understood us throughout our disabling illness)
But it’s been no bed of roses

(Difficulty remembering, concentrating, and performing simple mental tasks AKA Fibro Fog. Abdominal pain, bloating, nausea, and constipation alternating with diarrhea, AKA IBS)

No pleasure cruise

(Tension or migraine headaches, Jaw and facial tenderness. Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold)
I consider it a challenge before
The whole human race
And I ain’t gonna lose

(Our health has been taken from us but not our hope. With hope we can’t loose.)

And we mean to go on and on and on and on

(And we mean to see this illness through to the end!)

We are the champions – my friends
And we’ll keep on fighting
Till the end

(We are not the type of people to give up.)
We are the champions
We are the champions
No time for losers

(We’ve had many distractors calling fibromyalgia a trash can diagnoses and other disparaging remarks. We have no time for negative people.)
‘Cause we are the champions of the World

We are the champions – my friends
And we’ll keep on fighting
Till the end

(We choose not to let the constant bone crushing chronic pain keep us down. We will keep of fighting until a cure or better treatment is found.)
We are the champions
We are the champions
No time for losers

(We have no time for negativity or distractors. We are down enough and we need positive energy around us to help us fight this chronic illness.)
‘Cause we are the champions

(Not giving up makes us champions my friend.)

Fibro – Awareness

Fibromyalgia Symptoms:

Chronic muscle pain, muscle spasms, or tightness.

fibro_symptomsModerate or severe fatigue and decreased energy.

Insomnia or waking up feeling just as tired as when you went to sleep.

Stiffness upon waking or after staying in one position for too long.

Difficulty remembering, concentrating, and performing simple mental tasks (“fibro fog”).

Abdominal pain, bloating, nausea, and constipation alternating with diarrhea (irritable bowel syndrome).

Tension or migraine headaches.

Jaw and facial tenderness.

Sensitivity to one or more of the following: odors, noise, bright lights, medications, certain foods, and cold.

Feeling anxious or depressed.

Numbness or tingling in the face, arms, hands, legs, or feet.

Increase in urinary urgency or frequency (irritable bladder).

Reduced tolerance for exercise and muscle pain after exercise.

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