a very genuine moment...alone

It is very early Sunday. Then it will be Monday, then it will be Tuesday. Obvious statements right? Well yeah, but the point of them is how long those days will seem to me. I know this because of how long the last two weeks have been for me…ever since I heard the word “lymphoma” from a highly respected specialist in his field. Once those words echoed through my brain a bit, time has almost stood still. I’ve been stuck in fear of a couple tests, a surgery and then (now) who only knows what is yet to come. I’ve been reading, trying to learn the how, why and “what if’s?” I’ve had all the talks with my mom and my boyfriend. Nothing is confirmed, luckily so…but in my head for these moments…the not knowing is close enough to a “temporary cancer sentence.”

For now, I can’t catch a moment of peace lost in forgetting…because of the massive wound on my neck (healing; yet still very bruised, swollen and painful stitches) of the dissection/biopsy. I get ready to take a bath, and look in the mirror, and within minutes I have a stream of tears falling down my face. I see these masses still left to deal with, no matter the outcome. I see the drama of a phone call coming in on Tuesday afternoon confirming my worst thoughts…and once again, being left all alone. Although my mom has been amazing, she either doesn’t fully grasp how scared I am and how much pain I am in…or she’s just trying to not baby me too much so I don’t think the worst. Either way, it’s not having a positive effect on me. I just end up in my room, alone, sad, scared, more scared than I’ve ever been, feeling rejected, annoying, in the way…and did I mention…ALONE!!!!

I have the worst luck with Holidays at the end of the year. Seems someone always dies or something horrible happens. It’s made it almost impossible for me to look forward to this time of year. But I still do. Sure I want some presents. But I also want to see the expressions on my mom and Pedro’s face as they see the thought I put into their gifts. I look forward to all the lights, the snow, the smell of the snow…the feel of the snow. Snow makes me happy!!! One of the few things, pure as it is that does make happy. I’m the same way with water (except when it leaks into our basement of course.)

I’m scared of money, chemo, radiation, losing my hair, my dignity, left with a neck full of scars. It’s not like I don’t have enough skin drama to last 10 lifetimes already. I’m scared of getting better just when we run out of money and then having to leave our home. I’m scared of what if this potential cancer is really small lumps broken off from a larger mass in my abdomen. That’s kinda the way lymph node cancer can work. What if I’m going to die??? What if I want to die?? What if I’m done???

True. The word cancer is not a known issue yet. But for me; it’s my life, it’s my neck, and I don’t know what the hell is wrong…but something IS seriously wrong with the way I’ve been feeling lately!!! I don’t smoke. I never smoked; all but a little stoner stent in my mid to late 20’s. I’m 35 now. I hate that my mom still smokes. I understand her nerves and the addiction. But it’s like risking my life all over again. Even if I get a clean-ish bill of health this time…what about next time??? I have a very weakened immune-system. This is something she and I need to understand does come with some very serious risks. Sadly I am more likely/prone to catching certain illnesses…and that does include, cancer.

My throat still hurts so bad from that breathing tube used during the surgery…as does my lower lip still too…OUCH!! It feels like sandpaper about 75% of the time. Now with the heat being on so high, it makes the air dryer and makes my throat hurt even more. My neck looks so much worse than the picture I posted a couple days ago. It’s all purple/yellow now. It’s also so much bigger. Luckily the last bandage has not fallen off yet, because I’m not really ready to see what’s underneath yet. It hurts to lay comfortably. It hurts to turn my head in certain ways. It hurts when I sit still and do fucking nothing!! But just like my Fibromyalgia…I’m expected to bounce right back. My feeling are very hurt by some of this. Everything with me in the last two-three full years has been full of fucking hurt!!!

With Fibromyalgia generally comes Chronic Fatigue Syndrome. CFS is fairly self-explanatory; sometimes you’d almost rather die than get out of bed and function because of the insane fatigue. But even b4 the surgery, I felt much, much worse recently. I’ve literally not done anything fun or casual in the last many months. I’ve been to doctors and hospitals and that’s all. I went to the Apple store twice to get my new phone (which I needed) and the AppleCare for my laptop. And during both those instances, by the time I got back to the car….I could barely breath, I was so sore and dizzy…I felt scared, shaken and again….ALONE!!!!

So take me now, with all the above…add in the vicodin (that is seriously needed for this kind of pain) and I’m utterly useless!! I’ve managed to do a few things. I wrapped another present this weekend. I made some tea and toast for my mom. I’ve taken care of my animals. I’ve kept up with basic grooming. Other than that…I’ve just been sleeping. The more I sleep…the closer I come to the countdown of the phone call from the Otolaryngologist. His news will determine so much of the Kimberly I will remain or that I will become…good or bad.

If it’s not cancer, and I can painfully still have the remainder of these lumps removed…I’d actually almost be semi-satisfied. I do want them gone, so my head looks more…normal!! So I have hope that after the healing of that, I could get back to doing some regular things again and having some of my depression lifted. But, if it’s the other kind of phone call…I will most likely stumble to the floor and not do anything for myself anymore…because what is the point?? I’ve had too many illnesses. First my skin, then my mind, then my body…and now my body even more so. I feel so sick. I’m in so much pain. I’m so scared and I don’t think I can take much more of this.

My mom and boyfriend need to work during the days. They need to sleep at night. And they need some chill time to themselves in the evening. I understand that (to some degree…or I really try to.) But where does that leave me?? It leaves me…ALONE!!!

…and these are the genuine FEARS twirling around my brain at a non-stop speed…that nobody seems to understand ;c/

[Via http://kimberlysawczuk.com]

Does fibromyalgia “get better” with age? (Alert: Whining ahead)

I’ve encountered this statement a few times since being diagnosed with fibromyalgia in 1992. Finally, at age 63, I think I’m qualified to offer an opinion upon it:

No, unlike a fine wine or a teething puppy, fibromyalgia does not get better with age.

It might seem that way, because some things that do change with age may lessen one’s concern about symptoms, or even ameliorate them.

As we grow older, we expect to have memory lapses, aches and pains, and reduced energy and strength. The person with fibromyalgia has a head start on all of these, believe me! But with advancing years, these symptoms seem a bit less unreasonable—or perhaps I should say unseasonable—even though I am still more tired, forgetful, etc., than an otherwise healthy person of my age ought to be.

Starting several years ago other people about my age began assuring me that my symptoms were “normal” for this stage of life, they had them too. Their intentions were benign, but I don’t like to hear this; not because I am clinging to the distinction of my disease, being “sick” but not “old”, but because I feel that the impairments of fm have been different. [It also echoes the remarks so familiar to people with fm or cfs or other chronic conditions, “Oh, you’re really tired/achy? Yes, I’ve had that too, just get some extra rest, you’ll feel better.”]

I was 35 when an injury caused the continuous pain and disturbed sleep that gradually turned into fibromyalgia by age 40 or so. During that time I went from having an unusually good memory, to the reverse. What did I do yesterday? Did I eat lunch today? What did I do this morning? Often I can’t answer such questions without some sort of reminder. Sometimes even with a reminder I have no recollection whatsoever of very recent events, and everything beyond a few days ago is gone or vague. Some days I grope for words—for a particular word, or to be able to put my thoughts into words at all. For a person who used to remember where on the page a certain passage of a book was to be found, or the details of bibliographic citations years after checking them, this sudden decline was, and remains, a severe assault upon my sense of who I am. And rightly or wrongly I think the daze that so frequently envelops me is not typical for a 63-year-old. Maybe at 85 I’ll feel it is age-appropriate. Until then, dammit, I’ll feel ticked off and robbed. Join the club, eh?

Still, inevitably over time one grows less sensitive to diminished abilities, and the limitations are less at odds with one’s lowered expectations.

As for symptoms seeming to decrease with age, I think this is a result of getting better at coping and self-pacing. I’ve learned to avoid things that aggravate the fm, such as late nights, loud or crowded places, being on my feet too long, and overexertion (whether it be in duration or in type of activity). I’m less of a perfectionist, I have a combination of medication and mental techniques to help me get to sleep most nights, and I feel okay about saying “I need to go lie down and rest for a while”. It’s following the naval maxim of “maintain a steady strain”.

The danger with all of this—lowered expectations, avoidance of stressors—is that it becomes a downward spiral. And age provides a reassuring excuse. Of course I’m doing less than I did last year, I’m getting older.

I keep pushing myself mentally, with challenging reading and dogged efforts to learn new things. Even though most of what I read today will be gone from my mind tomorrow, I tell myself that the effort may keep the neural connexions from deteriorating as we know they do with lack of use. Blogging has become a good motivator, encouraging me to do some writing, and follow research interests to produce and finish short pieces.

Physical exertion is harder because the pain and fatigue always increase, sometimes severely. When I was working a fairly physical job, I came up with this description for how I felt when I got up in the morning: “as if I’d been forced to run up a mountain, and then kicked and rolled all the way back down”. The chronic fatigue and pain in muscles and joints have been dialed back now that I’m not on my feet all day lifting, bending, carrying, etc., but they’re still there. I’m struggling to stay on a program of walking about 45 minutes every other day, motivated by a recent blood-test result that was in the pre-diabetic range. Some days I don’t want to expend a big part of the day’s energy for walking, or I feel worse than usual. There are no rewards of feeling noticeably better, but if I take the dog and my camera I will enjoy the walk itself.

Being off of methadone has made a big difference mentally and physically. It’s been two years last month, and I think I’m still improving. I couldn’t have walked for 45 minutes before that. Drugs that don’t help just weigh you down, and methadone does a lot more harm than most. (earlier post about getting off methadone)

So, in some ways I really am feeling better. But it’s not due to aging.

Note for logophiliacs

After I put the word “whining” in the header, I encountered what would have been a good alternative if it weren’t quite so obscure. It has such appropriate associated meanings. I may whine and twine, but I’m trying not to dwine.

Twining

A minor lexicographical result of the devastating floods in Cumbria last week has been the appearance in at least two UK national newspapers of the dialect word twine, to complain or whine (“Cumbrians are a unique breed. They say what they see. They are hands-on people. They will twine and moan but then they will just get on with it.” — Metro, 23 November). It was at one time widely known throughout Scotland and the north of England. By way of another of its senses, to be fretful, ailing or sickly, it may be connected with dwine, another dialect word, to pine or waste away, which is from an ancient Scandinavian source. from Michael Quinion’s World Wide Words, # 667, 28 November 2009.

Photo by author.

[Via http://nosleepingdogs.wordpress.com]

What day is it

Today started well enough as I actually got up before 8am and took my son to school, doesn’t sound like anything special to anyone else but when you can’t get into any kind of routine it’s an acheivment.

There is quite a bit of pressure on me just now as I’m usually the one who makes the money to get us all by Christmas and the new year, maybe that’s why I’m sleeping more than usual just now.

I didn’t get much work done this morning but it felt good just even putting the pc on turning on the radio to my favourite station and it felt as normal.

But come 12 o’clock my energy gave way and the fatigue set in or realism, you see having fibromyalgia isn’t a career choice it’s something that just hits you and throws your life into semi chaos.

Can’t Christmas wait for another year…..

Top Tips to Relieve Back Pain and Fibromyalgia (Fibrositis).

There is much speculation about fibromyalgia, with some doctors refusing to acknowledge this painful condition, often the GP or physician will not offer adequate treatment or even refuse to treat the sufferer.  However, those people who experience the painful muscle spasms and pain associated with this condition would try to convince you otherwise.

Fibromyalgia is usually stress-related, and can be brought on by damp and cold weather conditions, and usually affects people from middle age onwards. Sufferers are those who often have jobs which involve sitting for long periods of time,, such as at desks, or driving for long periods of time. The condition seems to affect people most who are of a nervous, emotional, or anxious disposition, or those suffering from excessive stress.

The symptoms of fibromyalgia can vary in intensity, with aches, pains and tenderness usually felt along the spine and back, but can affect other parts of the body including shoulders, neck, chest, and knees. The after effects of this condition can make a sufferer feel completely exhausted, both physically and mentally, then at night getting no release as sleep will be restless, fitful, and very disturbed.
For the best treatment, aromatherapy massage with lavender, chamomile and rosemary can have a calming effect, both on body and mind. You can also use lavender oil in a warm bath to help relief stiffness and pain.

Symptoms of an attack can be reduced by taking Rescue Remedy flower essence. You can purchase this in liquid extract form in small bottles, or in pastille form. These remedies are available from good health food stores and high street chemists. Keep some in your bag or pocket if you suffer frequent attacks.

Partaking in some  stress relieving activities or exercise can be most beneficial for helping to improve the long-term health of fibromyalgia sufferers.  Try taking up regular walking in the fresh air each lunchtime for a bit of stress-relief, and to stretch out your muscles. Especially good for people with office or desk jobs!

Most leisure centre pools have early bird sessions, and you may find you can fit in a swim before work. Or if you have to be at work early, see if the pool runs evening swim sessions you could join after work. This would be great for winding down after a stressful day at work, and can often help you sleep soundly too.

Ever wanted to learn to dance? There is nothing better than learning a new dance, plus gaining all the health benefits of regular exercise along the way. Dance classes are also a great way of making new friends, who can also help you de-stress extend your social circles and put your troubles into perspective.

Check at your local community college to see what adult evening classes they run. You may find taking up a new sport or hobby can greatly relieve your stress, and could even lead to new work opportunities that you may not have considered before. Lots of people have changed careers as a result of learning a new skill or craft at adult education classes.

 

MNewbold is a prolific writer who loves to write about family matters, health and fitness, food and nutrition, alternative therapies, and general well-being.
For a comprehensive guide to manage your back pain by a team of experts in back pain and care, visit http://www.backpaincompendium.com  or www.expertbackpain.weebly.com

Thoughts on fibromyalgia

The more I read about fibromyalgia the sadder I am to realize many people believe it is purely psychological. Saying we don’t know the physical cause so there is none is like saying we know everything about medicine. Not true! We are always learning news things and have more to learn. Also, if you were in pain all the …time and couldn’t do the things you used to you would inevitably make you a little depressed about the situation. Being upset that you’re sick is not the same as being sick because you’re upset.

Upcoming Free Workshops

Tuesday, November 3: Tuesday, November 17

FREE WEIGHT LOSS WORKSHOP

Time: 7:30 PM

Five secrets to permanent weight loss. Learn why diets don’t work, why eating fat doesn’t make you fat, what hormone is out of control in your body, how to reduce chance of breast cancer by 70%, how to regain energy and vitality, what exercise program you should be on, and much, much more.

Cost: Free

Tuesday, December 1 : Tuesday, December 15

WORKSHOP ON DIGESTION

Time: 7:30 PM

Learn how the digestive system works and natural approaches to improve the health of the digestive system.

Acid Reflux, Hiatal Hernias, Ulcers, Irritable Bowel Syndrome, Colitis and Crohns Disease are just a few of the digestive disorders that affect over 61 million Americans each year.

Cost: Free

 All Seminars listed above are held at the Princeton Club Community Room at   14999 W Beloit Rd,  New Berlin WI 53151

Me , Who I Am

I live a pretty hectic life, I am first and foremost a single mum and that is not usually something I share straight up but , I see this journal as a semi blog and they are a part of me, so any man that wants to accept me as a true sub/slave needs to realize I come as a ready made package of 3. My lads are just the best thing I could hold in life. They are gorgeous human beings and they come first in my life.

Secondly I work full time, this keeps me busy , but I have like so many Australian’s a mortgage to pay and kids to put through private education.

*Whispers* : I’m not a breeder slave

Because I have Multiple Sclerosis(MS) and Fibromyalgia(FMS) I cannot “breed” anymore kids, I am although happy with what I have got.

Living with MS and FMS is hard, but what is harder is living with MS and FMS and being a single mother with 2 full of energy young boys.

I am not bound to a wheelchair, but I live with chronic severe pain, because although MS and FMS is treatable it is not curable.

These disease are disabling, but I am not disabled. I am still a very independent woman , I still can surf most days. AND I can still crack a smile from ear to ear. Because despite the cards that have been played, my deck is only getting stronger each day, and I am enjoying it so much more. Life is wonderful.

Fibromyalgia for those who do not know means “Fibro” refers to the fascia or connective tissue, “my” to muscle, and “algia” to pain. Literally FMS means pain in the muscles and tissue.

Multiply Sclerosis or MS is a central nervous system disease. When the protective sheath (myelin) around the nerve fibres in the brain and spinal cord becomes damaged, causing random patches called plaques or lesions. These patches distort and interrupt the messages that are sent along these nerves. ‘Sclerosis’ means scar and the disease is labelled ‘multiple’ because the damage usually occurs at a number of points.

So above all of this , I still can’t see why I can’t enjoy my life. I always seem to say to other people, Remember there is always someone fighting a bigger battle then you! and I believe that even in my situation. MS and FMS I would not wish on my greatest enemy , but I am so glad I have both because now I can educate the rest of the world about these diseases.

Awareness is a good thing in my books.

Do You Have "Fibro Fog?"

The Problem:

Do you know someone who has fibromyalgia?  Have you ever noticed, or heard them complain about problems with their memory?  If so, they may have what has been called “fibro fog.” You see, in the left temporal lobe of the brain is the area responsible for memory, it is called the hippocampus.  In people with fibromyalgia, this area of the brain is not working normally.  In most cases, these people have high levels of cortisol (the stress hormone) in their blood.  Cortisol is released from the adrenal glands which are on top of your kidneys.  Cortisol is an essential hormone for life, but when it’s levels are high for long periods of time, (as often seen in fibromyalgia patients) it is TOXIC to the brain.  It causes neural degeneration, (wasting of the nervous tissue that makes op the brain) and as a result, you lose your ability to think and remember things.

So how do you lower cortisol levels and get the hippocampus working again?

The Solution:

To help improve memory and get the hippocampus working normally again, you need to take a neurological and metabolic approach.  Neurologically, you need to “rebuild” the brain using neurological, brain based therapy (BBT). BBT works, because of recent breakthroughs in the understanding of how the brain works, called neuroplasticity. We offer brain based therapy in our office, and have had great success with fibromyalgia and other types of chronic pain using these treatments.  Metabolically, we have to check blood sugar levels, adrenal function and thyroid function to make sure your chemistry is balanced.  Labs, and salivary panels may need to be ordered, and can be done through our clinic or your primary care physician.  We will analyze your lab results and determine if dietary, supplemental and lifestyle changes need to be made. Using this two-pronged approach, “fibro fog” and fibromyalgia can be treated with success.