Only the Positive May Enter...All Else is Locked Out

For my followers on my Fibro Survivors United Facebook page, you all may have noticed that I do not post any of the hundreds of pictures and comments that reflect our pain, frustration, depression and fears. It is extremely difficult to do; allow only the positive to enter your life, to enter your mind. We are trained early on to always seek perfection, a better way. As we get older this turns into criticism of ourselves and others until all that is left is the negativity. War, hate, fear, self-loathing, lack of confidence and self-esteem.

Toss on top of this ever burdening load an invisible illness that causes chronic widespread pain throughout your entire body. Family and friends do not understand, doctors think you're faking, even conspiring to get ahold of the 'good' drugs for no other reason than to get high. You must fight to stay employed or fight for disability. We do deal with pain, anxiety, depression, insomnia, weight gain, migraines, loss, fear of the future. But what has concentrating on, talking about, and worrying about the negative aspects of my life ever gotten me but more of it?

It is a tough decision to decide that I will no longer allow all of the negative to walk through my door. I want to scream and yell at times to make others really see and hear my pain, but what would that accomplish? Their pity? If I cannot have an adult discussion on my diagnosis with them, and have them understand - is it worth it to keep fighting to try and force them to see me? The answer I finally came to - NO.

I have been reading and studying on the principles of the Law of Attraction. I have experimented with it. On small things that I would like...to test it. Everything I have put out into the Universe has come to me...as long as I only see the positive, and let it go. The principles are a bit trickier than that...but that is the jest of it. So there is something to all of it. It does work. Others say they have healed themselves through this process - doctors have called it a medical miracle. So what will it hurt to try?

My decision has led me to make some changes. I do not pay much attention to the news. Pain and hate is what sells and it is what the media likes to cram down all of our throats. So I say - no more. I no longer write about (complain about) my pain, frustrations, anger, etc. in my blogs or on my Facebook page, to my friends or my family. I no longer comment on or share any images or words that concentrate on the negative aspects of chronic pain. I only look for the positive information to share with myself and my readers.

This doesn't mean that all the ickyness of Fibro has vanished from my life in a magical poof of smoke and fairy dust (that would be very cool though), but I'm making progress. I try very hard (and I mean VERY hard) to stay on course. I meditate, do deep breathing, take long hot showers and Epson salt baths. I do yoga and get outside each day. I read fun books. I watch shows I like and keep my spirits up. And I write. I do not (try not) to discuss all the bad and icky of what I go through each and every day because the more concentration and time I put into the negative - according to the LOA - the more of it I will attract into my life.

I take my meds and see my doctors - I do not listen to them when they say I must accept my pain and that it will be with me for the rest of my life. What do they really know? Not much in the area of fibro...we've all found that out. So why listen to that? I choose not to. I research various methods, tips and tricks for helping and give them all a try. Some help, some don't. I'm trying to go with what works and just let all the rest go. It doesn't deserve my time and attention.

The negative people who have tried to stay in my life...no more. I am selfish because I love myself and I know better than any one else on this planet that I deserve happiness and joy. I deserve to feel good. I deserve a good nights sleep. I deserve anything and everything that I want for myself - and absolutely no one, no matter your level of education and how many initials you can place after your name, is going to be able to convince me of anything else!

So, I pass on all the images and sayings that increase my thoughts of pain and anything else negative in favor of the positive. Some days are easier than others, but I'm going to keep trying. I'm not going to beat myself up for forgetting this or that, or misplacing something or not meeting everyone else's expectations. I'm not going to let others have the control over me that they have had in the past - they cannot make me feel inferior or insignificant because of their own ignorance. I know exactly what I deal with each day and I don't need to discuss it at length with anyone except to update my doctor and keep my husband and kids updated on what my day is going to be (ie: I can do more today than yesterday...I need to take it easy today). I let my family and doctor know what I need without the complaining, crying, yelling and anger (ok, ok...I try VERY hard to do this).

Some might think this idea is stupid, ineffective or as one reader put it - to placate, but it gave her a really good laugh. We all have the right to our opinions but I've seen the difference a positive attitude and positive atmosphere have on a not very positive situation. There is just too much evidence that says there is something behind these principles to brush it aside. I do feel better on the days I'm able to stay more positive, and worse on my negative depressing days.

So this is what I'm doing, and this is why you won't find any negative imagery on my sites. I'll keep everyone posted on my progress.

♥ Gentle Hugs ♥

The Invisible Disease: Best Tips for Surviving Fibromyalgia

Posted on Yahoo!Voices.com

Having a diagnosis of Fibromyalgia can feel like a death sentence. Your doctor informs you that you have an invisible disease which causes debilitating pain throughout your body. You may lose your job, have to fight for benefits. You have to deal with doctors who think you're lying about your condition and symptoms and become a guinea pig in order to find the most effective medications and therapies. You'll deal with depression, insomnia, anxiety, extreme fatigue and pain. Then, as if that wasn't enough, you have to deal with the loss of family and friends who can't understand. Friends drift away, family stops calling. You feel empty and utterly alone. How can you be expected to deal with all of this?

That is how I've felt while dealing with my diagnosis. It's been six years of struggle. Doctors and specialists, tests and medications; being told that nothing is wrong with me and knowing that something definitely is wrong. You have doctors and therapists telling you that you need to accept the fact that you will experience pain for the rest of your life. What? Accept the pain. Why yes, I'm so excited to have to feel like I'm burning from the inside out. To feel spasms and shooting pain run through various parts of my body; I'm on board. Let's just accept it and curl up in a hole right now. I've been told by one pain specialist that, "well at least Fibromyalgia isn't life threatening". Really? What could be a worse threat to my life? Pain, depression, anxiety, insomnia, fatigue, migraines, weight gain; not being able to work, play with my son, take care of my home.

But what if there were a way of reaching acceptance? Not necessarily as the doctors have tried unsuccessfully to explain it, but a way of accepting a new life. A way of surviving the diagnosis rather than being a victim of the condition. That could change everything. It starts with how we see ourselves, what we tell ourselves each day.

Attitude is everything. One of the most important things I've learned during this journey is that if I feel like a sick person, I'll have horribly painful days. If I feel like a healthy, energetic person, I have better days . Dealing with a chronic illness can be devastating or it can teach us how to better care for ourselves. Sickness of any kind is our bodies inner alert system telling us that we need to pay attention and care for ourselves. This is the time to be selfish without guilt. This is the time to be vigilant; an active participant in our health. Keep researching, find support groups, interview as many doctors as it takes to find the one who will work with you on the best treatment plan. Look at alternative and non-traditional therapies like massage, acupuncture and osteopathic manipulative treatment.

Stress reduction is a must. Dealing with doctors and medications, trying to work (or coming to the conclusion that you can no longer work), trying to explain your condition to family and friends, fighting for benefits so you can take care of yourself physically and financially and just trying to get out of bed each day to continue the struggle can and often does overwhelm us into a deep depression and anxiety . There are things we can do to help reduce our stress levels:

• Find a therapist who specializes in Cognitive Behavioral Therapy (CBT). A CBT therapist helps us find the best approaches to dealing with our current situations. It goes farther than just talk therapy. You may be given writing assignments or asked to do certain meditations or physical therapies as part of your treatment.
  
  
• Find what makes you happy. Get a collection of books or magazines that you really enjoy, gather together as many happy, funny, feel good movies you can and have them ready for the times when you need them. Start collecting pictures of things or places that make you feel good and put them into an album or vision board. Play your favorite music. Light candles, soak in the tub, breath deeply. Start a gratitude list. There are so many things to be grateful for even when we are in a challenging time of our lives. Concentrate on those each day. And most importantly - stay away from what makes you angry or upset. If hearing the news upsets you, stop watching it. If your home is cluttered and a mess because you've been unable to clean, see if a friend or family member can help you or call a maid service to come in once a month. Get rid of the clutter and unnecessary in your life.
  
  
• Reevaluate your relationships. This is a toughie, but vital to your health. Do you have friends or family that no matter how hard you try to explain what is going on with you, they just cannot understand or be sympathetic? Maybe you need to let go of those individuals or at the very least put boundaries and limitations on the relationship. If you're having a good day, fine but if you're having a bad day you need to keep them away from you. Let them know that today is a 'me' day and you'll get back to them when you can (then, and this is the most important part, hang up the phone ). If it's a spouse or child, take them to your doctors appointments, have them sit in on a therapy session, reach out to your support groups for help in educating them. You need them on your side and they need to know that you are not just being lazy. This is real, this is painful and this is a struggle for you each and every day even if they can't see it.
  
  
• Meditate every day. Meditate, pray, get lost in a beautiful piece of music or art. Do what ever it takes to quiet you mind and find peace within yourself. Our minds are amazing things and they can change our very existence . We've all heard of the placebo effect. We're given a pill and told that it will make 'this' happen. When it happens we go back to the doctor and tell them how great this pill is and they tell us, that's great but we only gave you a sugar pill. The pill did nothing to help our bodies, our minds did. Being able to tap into that power that we all hold within ourselves is what will change our health around.
  

Stop concentrating on the pain and start concentrating on our health. We must be able to surrender our old limiting and negative beliefs. Find one part of your body that doesn't hurt that day and meditate on that. Image yourself being and doing the things you want right now. See it and eventually you'll start to feel it and feeling it before it has happened physically is the key to manifesting miracles in our lives.

The steps listed above will give you the ability to handle the stress of doctors and medications, working and benefits. The point is to keep yourself in a good feeling place and not a negative, self-defeating place. It may not happen overnight, but maybe it will. The time it takes to change your health around from fighting a diagnosis to surviving is completely up to you. Our beliefs and thoughts manifest the feelings we have and by changing those we change our physical reality. I'm a huge believer in the Law of Attraction and the belief that what we think and feel we create. I have every intention of creating my health and not my disease. Call it God, call it Source, call it what ever you want. But what ever it is, I'm doing it - what about you?

Quick reference list of doctors you may want to consider seeing if you have or think you may have Fibromyalgia:

Primary Care Physician / Rheumatologist / Neurologist / Osteopath Doctor / Physical Therapist / Nutritionist / Acupuncturist / Massage Therapist / Chiropractor

If you are looking for a place to start finding the resources you'll need to reclaim control of your health, visit Fibro Survivors United.

I wish you all continued peace and health on your journey with Fibromyalgia.

Posted on Yahoo!: http://voices.yahoo.com/the-invisible-disease-best-tips-surviving-fibromyalgia-12288481.html?cat=5

Keeping the faith with chronic pain

When diagnosed with a chronic illness a piece of you begins to shrivel and die. How could this be, why is this happening to me? Our faith in ourselves and our gods are shaken to the core. We can find ourselves spirally into depression and anxiety. We can't breathe. Anger is an easy emotion to turn to. Why has the Goddess turned Her back on me? What have I done to deserve this kind of karmic backlash?

You struggle to find the right doctors and specialists, the right treatment program, educating yourself, friends and family; not to mention the fight for benefits and whether you'll be able to continue to work. This alone could drive the strongest and healthiest of individuals into depression and absolute frustration. You need to have an advocate to turn to, to put your faith in. That's when we turn to our alter, light a candle, and ask the impossible question; why me?

If living in my pagan path has taught me nothing else, it is that we are given these challenges because we are strong enough. And there is a valuable lesson to be gleaned from it all. I can say with absolute certainty, from my own personal experience, that we don't feel strong enough in the beginning. Anything but. It takes time. For many, we have to grieve and mourn the lose of our former selves. Ritual and meditation is a wonderful place to start.

Meditate on who you saw yourself before - then on who you are in the present moment. Mentally light the fire on the pyre of your dead self, send her/him to the Lady. Then right down everything that has and will be changing in your life. How it makes you feel. What you plan to do about them. What you'd like to do about them. Cry. Scream at this paper; this symbol of what was. Then burn it. Watch it as the paper curls and blackens, flaking off to be carried away on a breeze. Watch the smoke rise steadily upwards to the gods. They hear you. They see you. Now take three long, cleansing breaths and just let yourself feel your body for a moment. It's much more difficult than you first think it is.

Sit with your pain. Feel it. And slowly, with time you can begin to accept it. This ritual can be done multiple times and for multiple reasons. Keep doing it as often as you need, but make a point to practice your deep breathing and let your self sit and feel your pain on a regular basis. Light candles and incense, cast your circle, invite the quarters, God/Goddess, and any other positive energies you wish. This takes time and can be painful in the beginning. Let the God/Goddess be with you during this time. Feel their energy holding you up and supporting you during this process. You would not have been given this challenge if you were not strong enough for it.

Buddhists call it Radical Acceptance. Well, I'll tell you that the first time my therapist suggested this to me, I thought maybe she was the one who had lost her mind. Maybe we should switch places and have a little chat about this. But, the more she explained it, the more sense it finally started to make for me. This "sitting with your pain and accepting it", has nothing to do with giving up. You feel your pain, and you accept that in this moment in time, this is simply how it is. Nothing more, nothing less. You accept that your doctors have diagnosed you, you are working on a treatment plan which you will follow through implicitly, and that you will continue to look, to research, to speak to your doctors about your health on a more regular basis. As aptly put by Tara Brach in her article, The Power of Radical Acceptance: Healing Trauma though the Integration of Buddhist Meditation and Psychotherapy, "which means clearly recognizing what we are feeling in the present moment and regarding that experience with compassion. I see over and over that Radical Acceptance is the gateway to healing wounds and spiritual transformation. When we can meet our experience with Radical Acceptance, we discover the wholeness, wisdom and love that are our deepest nature."

My diagnosis was a blessing of sorts. I cannot say that I'm completely accepting of my current life, because I struggle with these concepts every day, but with this health challenge I have been able to spend more time on myself and my health. I'm there for my son in ways that I couldn't be while I was working full time. Don't get me wrong, I loved my career, but this has changed my priorities. Made me take a long, hard look at what I really want to do. Writing, art, photography; these are the things I've been wanting to do but have always pushed them aside because I never made time for them. Now may be the time to stop pushing them away and embrace them as I work towards my own radical acceptance. Discover my wholeness, regard myself with love and compassion. Allow myself the opportunity to fully embrace my gods and what they have to teach me. There is a lesson to be learned within chronic illness, and each of us have been given the opportunity to find it, embrace it, and find a deeper connection with our chosen gods. I wish all of  you the brightest of blessings in your journey with chronic illness.

Caleen Martin


Radical Acceptance Article Refrences
http://www.tarabrach.com/articles/trauma.html
http://www.psychologytoday.com/blog/real-healing/201101/radical-acceptance

Live in the now...plan for the...

I read an article today that really made me think about the differences I've gone through from an healthy person, to one with sickness (http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/). I took so much for granted before I was diagnosed with FM. We all do. Every task has so many steps that we don't even think about. We need to decide each day; will I clean or will I eat, if I have to drive my son to school, what do I have to give up? We do what is of upmost importance, and the rest just has to wait until another day. And the article is right, when we spend time with friend or family, you're given a gift because we chose you as one of our utmost important things that day. We gave you a piece of ourselves just to be around you. That means a lot for us.

Pre-FM I thought a lot about the future; my future career, car, home, family, relationships, etc., etc., etc. But now - I look around my home and all I see is so much unnecessary stuff. Just things that are absolutely meaningless. I want uncomplicated and simple; it makes my day's easier that way. And now, I think more of the now then I do the future. Don't get me wrong, I do make financial plans regarding the future because that's just smart planning, but my life is now in the present. I can't live in the "what will be". I can only live in the now, because I don't know what my tomorrow will be.

Will I be able to walk? Will I be able to see? Will my pain leave me bed ridden? Could I end up with additional medical conditions that will complicate everything I'm already going through? The answer to all of these questions is most likely yes. I don't know how much longer I'll have to be able to get up and take care of my son, I don't know if my eyes are going to continue to blur to the point that I can no longer see. I don't know if my pain levels will continue to increase as they have been over the past few weeks. None of these are good signs, so I need to be especially grateful for each and every little thing I have in the now. Not in the future...just right this second. Because I have no idea if this is the last second I may have.

I'm not trying to be pessimistic or scare my family and friends, I'm just being realistic. I have a condition that in most will continue to progress and gets worse over time. So in order to prepare for the future, I need to live, NOW.

It bothers me when old friends say they will keep in touch and don't. Say they will call and don't. I miss them, but I don't have the energy to go to them. I can't give my half to a relationship any more...and that really bothers me. I don't know what to do about it.

I'm not saying that planning for the future is pointless, because it really isn't. I guess what I'm saying is that the next time you think about all the great things you'll do/see/be in the future...step back and think about all the great things you do, you see, and you are, right now. Because in the end, that is what really counts.

Communication and Chronic Pain

 

 

At its most basic explanation, chronic pain comes from stress. Stress on our minds, psychological and stress on our bodies, neurological. Combined, we can have excruciating chronic pain throughout our bodies. Many individuals who suffer from chronic pain or other debilitating chronic illnesses are lucky to have family, friends or a partner who understands their medical condition and the physical aspects of the illness; but how many really understand the importance of the psychological aspect? For that matter, how many sufferers of these varied illnesses understand just how much psychological stress impacts their daily health? We've all probably been told that stress can affect our health when we think about stroke and heart attack. But have any of the many, many doctors out there treating chronic pain sufferers included "communication education" on the prescription pad or as part of their physical therapy must do's?

 

Does your family or partner, friends or co-workers make ignorant and many times cruel remarks out of frustration? Do you burst into tears or say cruel things right back at them? My pre-fibro career was in communications, I like to think I can be reasonable. Not so much. Especially with the ever present mood swings that like to sneak up on me like a nasty little ninja, pouncing when I least expect it. My husband studies psychology, he should know better...right? It's so much easier to dole out the advice than take it. And I mean for both of us. I can't blame all communication road blocks on others, no matter how wrong I think they're being. I need to also take responsibility for my own words and reactions.

 

I believe this is true for all of us who find ourselves in these situations. How many of us have had a particularly nasty, stressful argument and within a day have an intense flare up leaving you in agony? Probably too many of us. Communication will make or break each and every relationship we have throughout our lives. So why aren't we taking it more seriously? My doctors have never mentioned anything on communication skills. I see hundreds of comments from sufferers trying to figure out how to deal with family and partners who are emotionally indifferent or at times abusive towards them. Suggestions include having them read comments on the various online support groups, leaving fibro pamphlets laying around the house, have them talk to your doctor at your next appointment; nothing in there about taking a communications course.

 

We, the sufferers of chronic pain, should be first in line for this. Not because we must be recluses who have no idea how to talk to other human beings, but this is difficult. Trying to express our feelings and needs, educate those we care about on our illness, and how to stay calm when we realize our loved ones are talking out of frustration rather than any true desire to hurt us. This is hard work and we can use all the help we can get. That is exactly why these kinds of courses exist, to help us all do a better job of communicating so we can keep the relationships we want in one piece, and be confident in letting go of those we don't need in our lives. They're as much about self-esteem and self-confidence as they are communication, and sometimes having the information come from an unbiased third party makes it more acceptable. I know I'm going to be going back through the ones I've taken in the past; of course, I'm blaming my fibro induced memory loss for the fact that I haven't exactly been using these techniques with my husband. That's my story, and I'm sticking with it.

 

Can you imagine what it would be like to have open, clear and relaxed communication with your loved ones? To have a clear system for acknowledging each others needs. How many flare ups would never have happened if this was how it was from the start? How much easier would it be to handle the daily pain without having to worry about fighting and arguing with your partner or kids? Not that there will never be a disagreement, but there are healthy ways of working through them, and then there's the way we've been doing it. And in the illustrious words of Dr. Phil, "How's that workin for ya?" On the flip side, how much will it mean to your partner, kids, loved ones, friends, co-workers? It could literally be the difference of being a victim of chronic illness, or a survivor of chronic illness.

 

It doesn't have to cost a fortune, although the information is priceless. College's certainly offer shortened and full semester courses if you want to go that route, but your therapist might have a number of good options for you as well. I was introduced to these courses through my career. One to two day workshops in communications that can be used in any atmosphere and relationship. A number of them are even on DVD so you and your partner can listen to them together at home, stop them, talk about it, and keep working through it. The DVD's also make it easy to go back and relearn what our medical memory loss has whipped out of our foggy brains.

 

So, everyone close your eyes and picture yourself at home, your loved one(s) around you. But rather than the typical tension in the air, tears or angry looks see everyone with peaceful faces, calm voices, and peace. Take a few deep breaths while imagining this new home, see it as if it is already like that. Feel how you'll really feel. Now take one last deep breath, open your eyes, and take the first step to making that vision your reality. But until then, take a note from above: before you speak, is it true, is it kind, is it necessary. If you can't say yes to all three, don't say it.

 

Here are some ideas to get you started:

CareerTrack* (www.careertrack.com) - used for professionals, but the same techniques can be used in any relationship. They offer workshops all over the country and dvd's of the workshops. There are a ton to choose from on all kinds of topics that could apply to your situation. (The two I've done: Assertive Communication Skills / Self-Discipline & Emotional)

 

Fred Pryor* (www.pryor.com) - I highly recommend Pryor seminars, they have the best speakers.

 

*If you are looking to purchase the dvd's, try looking them up on amazon.com. You can find more affordable options.

 

The remaining list is just some I've found online. I don't endorse any of these because I've never used them personally.

http://www.realhope.com/free_tips.php

http://well.wvu.edu/articles/the_language_of_love__communication_skills_for_couples

http://www.jdmcounselor.com/communication_skills_for_couples.html

http://health.howstuffworks.com/relationships/advice/communication-skills-for-lifelong-relationships.htm

 

And if you think about it the next time you're at a doctors appointment, have a discussion with him/her on this topic. Educate them on its importance so they can educate their other patients. Happy communicating, take the first step, make it happen.



Feeling your purpose

It's hard to not have a rough morning when you suffer from chronic pain. Every second is a trial and testament to our courage and strength to continue. But I can see the lose in so many, hear it in their words, see it in their eyes. I see it in my own mirror. It's heart wrenching to think that my life comes down to this. I had a really great career that I loved. I'm really good at what I do and I was going places. My son and I were really starting to connect and have fun together. My side hobby was dancing. I performed professionally in a tribal bellydance troupe throughout the state. I loved it. I was active, strong, organized. I knew what I wanted and how I was going to reach my goals. But things changed. I gained weight uncontrollably that the doctors couldn't explain. Then chronic fatigue hit and I slowly had to let go of all my physical activities and officially leave my troupe. The migraines became worse. They had been there on and off since highschool. Then insomnia and finally, the pain started. Just in my back at first. So I decided to get regular massages. They didn't help, in fact, my pain kept increasing. My next step was a chiropractor. She put me on a regimen of chiropractic work, massage, acupuncture, physical therapy and using a tens unit. It sounded like a good plan to me, but the pain continued to increase until no one could even touch me. So I went to my doctor who immediately gave my narcotic pain killers. That didn't end well, and I found a new doctor.

Now, after trying every non-narcotic pain medication there is out there I'm on two different ones that help 'a little bit'. But my doctor is out of options. I've seen all the specialists, they all agree on the treatments I've received thus far. But now I'm back to square one. I'm going to look for a pain specialist and see if there are other options available. Do we simply have to deal with taking stronger medications that will cause addictions? I'm at a lose. I'd like to try acupuncture again. I'm also trying Ayurveda herbs (Ashwagandha in particular) and looking more into trying gluten free again. I'm really not sure I have a lot of options left to me, but I'll never stop looking.

My story seems to mimic so many. Gone through multiple doctors, been thoroughly used as a guinea pig for every medication known to man. And you're still waiting for that pill, that exercise, that stimulant that, may not totally take away the pain, but definitely decrease it to a more manageable level.

I see the lose, but I also see determination in the creased brows and firm lips, the pinched checks, and exclamations of hope. Every day we wake up, every day we take one more step closer to finding our answers to our conditions. This is a war we are all fighting, for many it is a very long war. But we must remember that a war cannot be won in a day. We must take on each battle as they come our way. Eventually, eventually there will be an end for each of us. Better medications, supplements, homeopathy, doctors, research, therapies...something. It could be different for each of us, but we'll all get there. We have to, because we're here for a reason, and that reason is NOT to live in constant pain and watch our lives fall apart around us. No god would ever condone such a life sentence. We are meant to find our answers to this so we can live productive lives. So we can feel our purpose.

I know all to well how impossible it seems to keep fighting when depression and anxiety reaches its gnarled hands up from the depths of the earth and grab ahold of you. It feels like the world is no longer a place you want to be. You question how you can keep doing this, day after day, with no relief. You question whether you are more of a burden to your family and if they would be better off without you. But I've found that these things aren't me, they're just the depression trying to use me as some kind of puppet to spew its filth and vile hatred. And yes, we have all succumbed to it at times. But eventually we have each crawled out of that hole and back into the light again. For our partners, for our children, for our family, for our jobs, for our friends. We fight our way back because they do need us.

This isn't an easy journey. But its a journey that has already proven how remarkably strong we all are, or we wouldn't be here right now. Our strength lies in our courage to wake up each day and keep going, to try again. And every day we get a little closer to the end. We may not see it until we're literally on top of it, but its coming. So the next time we wake up and know from the start that its going to be a rough morning/day, just take a minute to slow down, close your eyes and place your hand over your heart. Feel it. It keeps beating. That's your purpose. Feel it. Be it. Never give up hope. Brightest Blessings!

Mourning your lost life...becoming a survivor

When sat down by a doctor and explained that you have an incurable medical condition that could become completely debilitating to you, cause you daily pain, and change every aspect of your life. You die. Your physical life has died, your career has died, your ability to care for your family has died, your ability to enjoy the intimacy between yourself and your partner, has died. But your lungs still breath air, your heart still pumps, and you must create a completely new life in spite of your medical conditions. If you're lucky you have a good medical team to assist you with changes regarding your health and what you need to do to really take care of yourself, but many of us don't get that. And the fight begins, to find the right doctors, therapists, friends and family to make up our new support system.

This journey into this new, strange and painful life is fraught with challenges. Trying to get our friends and family to understand what we are going through; and trying to understand it ourselves. Trying to find doctors who will help us. Trying to work, take care of a home, be there for our family, still be a friend, hobbies, interests...and lets try to do all of this while your body is literally spiraling out of control. This journey isn't easy, depression and anxieties set in. We turn in on ourselves. We stop doing all the things we used to love. We turn away from those who care about us and need us. Our pain grows. Each day is filled with challenges that we can't understand, we are tired of facing, and we just want it to stop. We lose everything from our old lives. We need to mourn our old self. That person no longer exists, and that person isn't going to come back. That person died the moment the symptoms started to affect your daily life.

You need a way to mourn the lose of that person you used to be. Psychologists say there are steps in the grieving process. There are no rules to grief, no steps or stages except our personal journeys which are unique to only ourselves. It will take us as long as it takes us. But at some point we need to let go. We need to live in the present and leave the past where it is...in the past. Perform a memorial service for your old self, set up an alter, write a letter of everything you feel about your old self - and burn it. Give yourself permission to scream and cry; gut wrenching and messy. Do it, do something, just do it.

There has to be a life waiting for each of us after fibro. I honestly believe that the challenges and trials we face in our lives are for a reason. There is something that we must do. Research and find the perfect doctor, reach out to others, set up an organization that helps fundraise for research, work on education of the public or maybe just your friends or family. It doesn't necessarily have to reach a large nationwide audience, but there has to be something. We never know how we are going to really affect those that come into our lives through blood or choice.

We need to embrace our new normality. Stop being afraid to ask for help. And be grateful for each and every little thing we have in our lives because there is always someone out there who has it worse. We are blessed for all of the things we have in our lives; we need to concentrate on those. Meditate on them. Find what you need to help put your body in a state of peace: cold/hot packs, aromatherapy, water therapy, acupuncture, medications, music, yoga, meditation, deep breathing. The options are truly limitless, we just need to find what fits us. What works for us.

We cannot allow fibromyalgia to become our identity. We are so much more than that. Its just one piece of our puzzle. Yes, we suffer from fibro, but we are also parents, children, grandchildren, partners, lovers, friends, co-workers, educators...fibro is not the end all, be all of our existence. We cannot let fibromyalgia run us over and take our lives away from us, we are not the victim of fibro...we are the survivors of fibro. We need to remember this. Every day that we wake in the morning, put a note on your nightstand or on the bathroom mirror so you'll see it first thing in the morning. I am a survivor!

This journey into this new, strange and painful life is fraught with challenges. Trying to get our friends and family to understand what we are going through; and trying to understand it ourselves. Trying to find doctors who will help us. Trying to work, take care of a home, be there for our family, still be a friend, hobbies, interests...and lets try to do all of this while your body is literally spiraling out of control. This journey isn't easy, depression and anxieties set in. We turn in on ourselves. We stop doing all the things we used to love. We turn away from those who care about us and need us. Our pain grows. Each day is filled with challenges that we can't understand, we are tired of facing, and we just want it to stop. We lose everything from our old lives. We need to mourn our old self. That person no longer exists, and that person isn't going to come back. That person died the moment the symptoms started to affect your daily life.

You need a way to mourn the lose of that person you used to be. Psychologists say there are steps in the grieving process. There are no rules to grief, no steps or stages except our personal journeys which are unique to only ourselves. It will take us as long as it takes us. But at some point we need to let go. We need to live in the present and leave the past where it is...in the past. Perform a memorial service for your old self, set up an alter, write a letter of everything you feel about your old self - and burn it. Give yourself permission to scream and cry; gut wrenching and messy. Do it, do something, just do it.

There has to be a life waiting for each of us after fibro. I honestly believe that the challenges and trials we face in our lives are for a reason. There is something that we must do. Research and find the perfect doctor, reach out to others, set up an organization that helps fundraise for research, work on education of the public or maybe just your friends or family. It doesn't necessarily have to reach a large nationwide audience, but there has to be something. We never know how we are going to really affect those that come into our lives through blood or choice.

We need to embrace our new normality. Stop being afraid to ask for help. And be grateful for each and every little thing we have in our lives because there is always someone out there who has it worse. We are blessed for all of the things we have in our lives; we need to concentrate on those. Meditate on them. Find what you need to help put your body in a state of peace: cold/hot packs, aromatherapy, water therapy, acupuncture, medications, music, yoga, meditation, deep breathing. The options are truly limitless, we just need to find what fits us. What works for us.

We cannot allow fibromyalgia to become our identity. We are so much more than that. Its just one piece of our puzzle. Yes, we suffer from fibro, but we are also parents, children, grandchildren, partners, lovers, friends, co-workers, educators...fibro is not the end all, be all of our existence. We cannot let fibromyalgia run us over and take our lives away from us, we are not the victim of fibro...we are the survivors of fibro. We need to remember this. Every day that we wake in the morning, put a note on your nightstand or on the bathroom mirror so you'll see it first thing in the morning. I am a survivor!

My Writing Continues???

So I've been trying to come up with what I can do in order to prepare myself for possibly needed to go back to work at some point. I've discussed this with my husband, of course, and he likes the idea of expanding my writing and photography...doing freelance work while I continue to work on my novel. I can submit shorter pieces for publication and continue to grow my portfolio. And, most importantly, I don't have to be in an office. I can work from the comfort of home so I have my physical needs met. Having a chronic pain condition makes thinking of getting up each morning and trying to make it into an office by 8:00 am a complete and total nightmare of epic proportions. Just the stress alone of whether I could make it there...and stay there for the entire day. I don't think I'd be able to physically do that right now. My condition appears to be getting worse, not a good sign. And not exactly something that will get you a job, or let you keep one if by some miracle you are hired by someone.

My college education is in visual communications and graphic design, photography, and writing. I can take courses and research how to do freelance editing as well; I could make this work. But first, I need to start getting myself published again. My previous published articles were all in journalistic style. Very fact based, analytical. The kind of writing I'd like to do is quite different. I've been a practicing Wiccan since I was fifteen years old...so for twenty years. There's a Wiccan/Pagan magazine and ezine that takes submissions for publication. So I say...why not? I can write about my faith, what I do, challenges I have had, or what ever special topics they are looking for.

There should be other publications that take freelance contributions, I just need to find the ones I like and start submitting. The same with my photography. My husband reminded me about all the photo contests that happen all the time; just need to start submitting. I can even sell my photos on a website, blown up poster size. It may not bring in a lot of money, but it'll bring in something eventually and I'd be able to contribute again, find something I can actually do with my pain condition.

That's really one of the worst parts of all of this, besides the actual pain that is: the lose of everything you were able to do before. I had a career, a dance troupe, physical activities that I loved to do...that life has died. I'm still mourning that life, I just don't want to let go of it yet. I can't bring myself to say that I'm going to have this disease for the rest of my life and say goodbye forever to all that I was. I liked who I was, the dancing, the career, my yoga, pilates, zumba...I felt good. I looked good. I can't say goodbye to that, I want it back to much. I'm still fighting, which doctors say I need to stop doing. No fighting, but continue to educate myself on treatments and research, and accept that for this moment, I have pain. This is extremely difficult, especially when you try to say it, but your insides twist into a knot because deep down you don't feel the truth in that statement. I still feel that acceptance means giving up. Maybe my doctors need to come up with a new word that isn't so negative to me.

But, regardless of my issues with acceptance of my current condition, I'm going to try to write and submit for publication again. Wish me luck!

The fibro ailments catalog

I've been reading a site with others who suffer from fibro and other pain conditions. I agree with my husband that its important to communicate with others who know what I'm going through, but at the same time it can become overwhelming. All of the lists of fibro related ailments, new information being researched and posted to help answer questions for us. It can seem like an endless battle that will only become worse as time goes on. I don't have to just look forward to a life of chronic pain, but depression and anxiety, pain flares, fibro fog and memory loss (short term and long term), muscle spasms and twitching, continued insomnia, muscle weakness and inability to lift or use my limbs, eye sight issues, more migraines, the list just keeps going on and on. Is this really what I'm looking forward to as I get older? What am I going to do to my family? My husband and children will  have to watch all of this up close and personal. How can I say that's ok? They deserve someone who's healthy and strong, and I'm just not that. I can't even come to terms with my situation and diagnosis, how on earth can I expect my loved ones to do it? I love them all so very much, but I don't want them to watch me deteriorate. I don't feel like any of this is making me stronger...how can I do that? How can I make this an experience for my family that won't leave them angry and frustrated at me?

Does anyone have any ideas???

Day 2...the numbness continues

Day two, I don't feel anything. Not happy, not sad...just nothing. Late last night, I got angry. My husband posted a joking picture on FB and I exploded when I saw it. It wasn't meant as anything...I rationally know that, but I lost it and posted a not very nice response to this picture. In his words...I publicly castrated him. I deleted the comment I made very soon afterwards and apologized to him, but I just lost it. I've even had to go so far as deleting this image from my FB news feed so I won't even have to look at it. I think I prefer the current numbness to the raving lunatic I turned into last night. But now...we're back to numbness.

My husband is worried about me. I understand that. But this is how I'll get at times, dealing with the pain. Dealing with my daily stress. My mind just says, "that's enough, we're shutting down for the day", and this is what I end up with...numb. Well, until I get angry about something...then I really get angry. Then maybe I'll cry...then numb again. Maybe this will last for a day...a week...I don't know. The joys of depression from chronic pain. I wouldn't wish this life on my worst enemy.

I wish I could keep this part of me away from my loved ones, but I don't think that's possible. Eventually, as my husband is just now finding out, I will break and fall apart. He's desperately trying to help me, I know this. We will have a wonderful life together...but no matter how wonderful everything is around me...I'm still in pain. That will never stop, never give me a break. No matter what...it will always be my constant companion. Which makes me feel alone, because I can't fully explain this to anyone. They aren't in the constant pain I'm in...how on earth could I even expect them to understand. In my life, in my pain...I am completely and utterly alone, regardless of how many people are physically around me.

How do I explain this to someone I love with all my heart, but know they'll never really understand?

Emotionally Numb

If you ask me how I feel right now...the only answer I have is nothing. Emotionally, I feel absolutely nothing. So what does this mean? My mind/body has hit the massive brick wall of stress. I've shut down because I cannot deal with any more. Our mind is a funny thing I suppose; emotionally I'm numb, physically my body is on fire. Why can't my mind give my body a little of this numbness? I would like to be able to cry, but I can't. How the hell am I going to get my feelings back? Maybe I'll meditate on this little problem and some great and powerful wisdom will reach through the ether of time and space and give me an answer. And while they're at it...a cure for fibro. That would be nice to.

I wish I had a healthier reaction to my stress...but no...lets repress and block it all from the mind, and then stab a million red hot pokers all over the body. Yeah...now that sounds like a good time. You've gotta just love the irony there. But, at least I'm not having a nervous breakdown...yet. Gotta keep your eye on the positive, because my life is getting tossed around like one of my dogs toys when he really gets it into himself to utterly thrash it. And all I can think of...what's next?

Facing an incurable medical condition

I’ve been trying to figure out what has been going on with my body for over four years now. When I got pregnant with my son, I just knew it wouldn’t be an easy pregnancy, and I was right. I’d had problems with unpredictable monthly cycles and pain for as long as I can remember. It was so bad that at 13 I was put on birth control pills to regulate my cycle and help with the pain. It didn’t help with the pain, and it continued to get worse over the years; to the point that when the pain hit, sometimes my knees would actually give out from under me; not fun in the least. And of course doctors didn’t have a clue; or they just didn’t believe the extent of the pain I experienced. They were at a loss, and so was I.

My son was my 4th pregnancy; so I knew that having one of those pregnancies where you feel great and love the feel of your child moving and growing wasn’t going to happen. At around 7-8 weeks the nausea started, and I literally couldn’t eat…anything. So I really didn’t put on any weight until my 3rd trimester. And nothing helped; it was constant 24/7 misery. I also experienced a lot of pain every time my son moved or kicked. The doctors didn’t really believe me; I was under a lot of stress. I threw my now ex-husband out of our home, and had to come to the realization that I was going to have to raise our son alone. He wouldn’t get the help he needed; and our last argument concerned whether or not physical punishment was acceptable. His argument included that it was “none of my damn business if my father-in-law was abusive…that he (my ex) needed and deserved to be beaten by his father when he was a kid because he was disobedient.” Because children are just known for their obedience…really? (That’s a rhetorical question.) I didn’t have to be a mother to know that the job of a child is to learn, which means that they will push every button and try to cross every line you have. How else are they supposed to figure out what’s right and wrong; what they can get away with and what they can’t; what’s acceptable in life and what isn’t. You never raise a hand to a child! So, as so many other 6 month pregnant women would do, I blew. He either set up family counseling and made the effort to realize how very wrong he was…or he just wasn’t welcome in our lives. We haven’t seen or heard from him since. He’s never once tried to see our son, and I’ve never seen a penny is support.

Because of all of this personal stress, I couldn’t walk a block without having contractions, and every time my son moved or kicked it was extremely painful. The morning I went into labor everything appeared fine. All the usual progressive signs of labor starting were there, and I wasn’t very uncomfortable…considering. So after my water broke I informed my mother it was time to head to the hospital. In retrospect, I really wish I had hired a Duala. I needed an advocate to stop the ediots in the medical profession from making my labor and delivery of my son such a horrible experience. I wasn’t exactly in the best of positions…trying to bring a living being into the world, and my mother didn’t understand what was going on any more than I did. It wasn’t until afterwards that I found out the absurdity of what they did, and that I really could have refused some of what they stated was necessary. But I didn’t know. A Duala would have known; so I highly suggest that every woman, regardless of how many children you have, have a Duala. Their entire purpose is to take care of you, make the experience of giving birth to a child a wonderful experience, and be an advocate for you on what your wishes are during labor. I had no idea how to speak up, and I was scared…so giving birth to my son was one of the worst experiences I’ve ever had. 26 hours of labor, half way through, the pain hit me so hard that I began screaming uncontrollably. Not a single nurse came to my side to help comfort or calm me, or help me breathe. They ran out of the room, and came back with a doctor who pulled me into a sitting position, pushed me over to round my back, told me not to moved, and gave me an epidural. Something that I had specifically put in my written birth plan that I didn’t want!

So after 26 hours I’m informed that my cervix is closing and an emergency c-section is required. I knew something wasn’t right when I could feel the razor when they saved the area my doctor would be cutting. So while I’m open on the operating table, the epidural just stops working, and I start screaming that I can feel it…at that point I’m gassed and knocked out.

After I wake up, I find I’m in a hospital room, my mom has my son. He was fine…not a single health issue. Of course they did all the completely unnecessary medical injections/tests that I specifically said I did not want done…so let’s just put it this way…everything I wanted for my son’s delivery, didn’t happen. I’m then told that it took almost 2 hours to repair the damage inside me…apparently my uterus kept tearing (so that certainly explains the pain I was in every time my son moved.) After two days I left the hospital, they wanted to keep me longer, but I needed to get out of there.

8 weeks later, I’m back in the OR for unexplainable abdominal pain. They open me up, and I end up with a full hysterectomy. And this surgery took another 2 hours (should have been 30 minutes). My doctor explained to me afterwards that there wasn’t even a medical term for what they saw. My uterus had literally rotted and fallen apart inside me. She said all that was left was goop; which took over 2 hours to clean out of my abdomen.

It turned out; my son is truly a miracle child. They (the medical professionals) can’t explain how I was able to make it through the pregnancy, or how I was able to deliver a healthy living child. Such medical cases always end in either miscarriage, or a still-birth. My son was obviously meant to be here, and every day (even on the days when he drives me out of my mind) I watch him learn, and grow, and experience. He amazes me, and I’ve never loved anyone so much in my entire life. However, it took my some time to fully realize and appreciate how precious and amazing my son is. I went through a year of postpartum; I had to really rely on my mother to not only help care for my son, but take care of me because I just couldn’t do it. It has been a struggle on both our ends, but I will be eternally grateful for what my mother did. She stepped in and literally raised my son when I couldn’t.

After the second surgery the medical issues really began. Within a couple of months the weight started coming. I’m now 50 lbs. over-weight; and it’s just doesn’t want to go anywhere. After about a year and a half, the chronic fatigue hit. I was a dancer, performing all over the AZ with my troupe. I loved latin dancing, yoga, palates, zumba. But slowly the fatigue made all of these activities impossible. And the weight just kept coming. About a year after that, the insomnia started. I’ve had to take a prescription sleeping pill every night for the past 11 months, and I’m going to have to continue using them for an indefinite amount of time. I don’t even have the energy to keep in touch with friends; so every day I come home with my son and it takes everything I have just to make sure he and the house and dog are taken care of. And finally, the chronic muscle pain began about 6 months ago.

It began as a sore back that just wouldn’t go away; so, I decided to try and get a massage at least once a month. But the pain got worse, not better. So my next step was to go to a chiropractor. I began getting adjustments, and the pain got even worse. I’ve tried acupuncture…no luck. The pain is so bad now that I’m on pain medication 24/7.

And what are my medical professionals doing you might ask…scratching their heads mostly. Don’t get me wrong, I don’t blame them. I realize that today’s doctors just aren’t trained to look at the whole body. They’re trained to do whatever they have to in order to get rid of the symptom. This doesn’t help the patient (me) at all. Masking and covering up symptoms isn’t going to make the situation better. But my numerous doctors have given it their best. I’ve gone through about 7 different ones now. I’ve had more blood work done than most people have in their entire lifetimes. I’ve had ultrasounds, scans, xrays, MRI’s, you name it. We’ve looked at my vitamin levels for deficiencies, my hormone levels, my thyroid, my bones, my joints…I’ve been tested for everything under the stars. I did have a slight vitamin B deficiency which has since been corrected. I do have a 1 centimeter growth on my thyroid, but they say it isn’t affecting my thyroid levels at this time and we’re keeping an eye on its size for growth. The MRI showed very slight arthritis in my back, but nothing major. The tests have told us nothing, but my symptoms are very real, and continue to get worse. Oh, and I’ve lost almost an entire inch in my height. I’m short as it is…so that wasn’t exactly a fun discovery. I used to lie and say I was 5’4”, because I was closer to 4” than I was 3”; not any more.

So, what’s next on the list of diagnosis that my doctors have given me…fibromyalgia. My current doctor, a very nice woman, but still, being educated in the current medical world in the good old US of A automatically gives her a disadvantage regarding my treatment. Look at the symptoms, not the person; but I’m still hopeful. I’m on pain medication so I can function, sleeping pills every night so I can sleep, and 2 different medications for fibromyalgia. They may work, thus far they aren’t. But we keep trying. I can’t live on pain medication, nor do I want to, but that’s the world I’m living in right now.

My doctor tells me that although it isn’t medically proven, fibromyalgia appears in a number of people after a physical trauma in their lives. I’d certainly say that my pregnancy, labor, and postpartum would constitute a physical and emotional trauma. A wonderful and bonding experience with my child…it was not! And I hope that my medical issues haven’t caused any undue emotional problems for my son, he certainly doesn’t deserve the blame for any of this. He’s been the innocent bystander who unfortunately has a mother with continuing medical problems.

The medical literature on fibromyalgia isn’t particularly inspiring, but I’m still investigating all of the information I can dig up. My doctor says that once we find a medication(s) that work for me, my fatigue and pain should let up…let’s hope! I wake up in the morning and my entire lower half of my body just throbs with pain, my back has shooting pains, and It just tends to move all over my body. The mornings are the worst. I just want to curl up in a ball and cry. But I don’t (at least not every morning). I take my pain medication as soon as I wake up, and get into a warm shower. The warm water helps after the fact; during, even the spray of the water on my back hurts. If you press on my back, gluts, or thighs I’ll scream…which is what one of my chiropractors found out when they started testing all of the pain points they check when considering a diagnosis of fibromyalgia.

I’m trying to stay positive about all of this. At least I have a name for it now, even if it took 4 years to get here. And I refuse to accept that my physically active life is over. I miss all of the activities I used to do, and I want that life back. I feel so uncomfortable in my own skin. I look in the mirror and it’s so hard to not be disgusted by what I see, but I try. There are a lot of days that I cry, but no one sees it. I keep a smile on my face, do everything I can to not give in to the pain, and just keep going. If I give up, I’ll drown in this disease. I can’t and won’t let this disease rule my life; it won’t define me. I cry when no one can see because I need to release all of the negative emotions I carry around inside me, but then I take a deep breath and tell myself that everything is going to be okay. It has to be.

I will figure out how to live with this disease. It’s incurable, but others have found a way to live with it, and so will I. I will not be defined by a disease, but by who I am and how I chose to live my life. Just breath…everything will be okay.