Archive for the ‘health’ Category

17 Dec

One mom, one son, one day

Posted by DOGKISSES in family, health, life, mental health, mental illness. Tagged: , , , , , , .

Sea Otter Mother with Pup Beside Morro Bay CA ...

Image by mikebaird via Flickr

“Write out your boundaries while your son is here,” the hospital nurse suggested to me over the phone.  “Write it out –what you are and are not willing to do.”

I remembered the conversation I had with this nurse less than two months ago when he suggested that I hand over some of the care giving responsibilities I’ve taken on.

He didn’t say to whom I should hand any of them over to and so far nobody has volunteered nor do I know of anyone who can relieve me, so there.

I have boundaries.  I told him my son doesn’t care about his life and with genuine sincerity he said he completely agreed.

How is a mother supposed to handle this… knowledge?  Just this one part of a longstanding stressful and heart breaking situation is as hard as anything I’ve ever felt.  To think that it is the truth deeply disturbs me.  To think that my son doesn’t care about his life puts me into a hypnotic state of grief.

Everything I’ve ever learned or believed or know is not applicable to the way I feel.

Boundaries mean nothing.  Lists mean nothing.  Text book ideas and ideals mean nothing.

The only thing that matters to me now is my son and his life.

Statistics, treatment models, my son’s history, “the highest level of mental health care available,” which my son has in an ACT team and as the nurse added during our conversation today, “people are waiting three to six months to get services from an ACT team,” –none of this is applicable to the way I feel right now.

I’m unhappy with what many people are seeking and waiting for.

Part of the problem is that my being dissatisfied with the services the ACT team is in reality providing for my son rocks a boat that is barely staying afloat.

“The ACT teams are overloaded with too many people and not enough resources,” the nurse said right after he told me about how many people wants and needs this service.  I’m well aware of the state of affairs within the mental health system.  They are not good at all.  “They don’t have the resources to see all of their clients, (a.k.a. consumers).  Some of the people just don’t get seen.”

My son is one of those clients.

“Your son is difficult,” he said.  I’ve heard this several times.

His teachers said he was difficult throughout his school years because he talked too much.  The creative and interested teachers loved him.  The ones who found ways to make school work for him, which was hands-on-learning, discovered that my son was not only bright, but also quite capable of being a, “good student.”

“The ACT team is difficult!” I said with strong conviction.

I like the nurse.  He has taken very good care of my son many times now.   I respect him and now, I think I need to be taken as seriously as anyone else involved in my son’s health care.

“I need you to hear me,” I told him.  “You guys have to listen to me this time.  Hear what I am telling you.  The ACT team is not providing these services to my son.  They have many good and very valid reasons, but I cannot accept them as an excuse not to see him.”

He said he would definitely pass on my concerns to the doctors and I know he will.  I know they will call me just like they always do.  They really are good doctors, but something happens in route from our conversations about resources and ideas as to what might help my son live independently in a community –to the day my son is discharged.

Somehow what is said doesn’t make it to a written document and he comes out of the hospital with the same treatment plan that he went in with.

The nurse has told me before how much he likes my son.  “I find him fascinating when he can communicate,” he told me not long ago.  Today he said my son is cognitively slower than he has seen him before.  I realize that, which is why he’s in the hospital again.  I’m very worried about my son.

The nurse also reminded me that he thinks my son is a really good guy.  Everyone who knows my son says this about him.  Most people say he’s sweet.  That’s the word I hear most when people talk about him.  People have said that about him since he was a little boy.

He has this kindness, this sort of giving unconditional loving way about him, but when he is sick, well…  I’m lost for words.

My son is lost.  He is truly lost in this world and I guess, so am I.

They say he has schizophrenia and he does have the symptoms, but he’s never fit any mold within the diagnosis, even as precarious as that is.

I’ve always felt in my heart that the doctors should focus on addiction issues, at least once.  I know you can’t force recovery from a substance addiction on any person and when that substance is causing symptoms of schizophrenia… well, I’m lost for words again.

Addiction joined with schizophrenia, or more accurately, the symptoms of schizophrenia, — is very hard to treat.  “The addiction your son has and schizophrenia are each possibly the two worst diseases a person can have,” one medical doctor told me a few years ago when my son was struggling with substance abuse.  “Your son faces both of these,” he added.

I wish the hospital would take the approach that some of my son’s school teachers took and give him a new chance.  I wish they would just one time forget his past failures and look at the successes he’s had and say hey, you know, we think your life is worth a great deal.  We want to help save it.

I wish just one time that they could for a little while stop thinking of how things don’t work, stop thinking inside the box, stop telling me things I learned when I was five years old and give a good college try towards developing a new plan.

I know this would take some time, but it’s a hospital.  A teaching hospital.  A teaching hospital with renowned doctors and bright residents who are still young enough to be idealistic,  so why not teach them how to approach the most challenging patients?  Why not teach them that they might can make a real difference in one family’s life with a little extra time thinking, communicating and reaching out to find resources in the community?

“He’s older now,” the nurse also added.  I’m tired of hearing that too.  It’s clear to me that younger patients get a bit more attention and time, I guess, because the doctors are more hopeful that they can do something.  (Studies suggest that early intervention in schizophrenia leads to a better prognosis).

His age isn’t applicable to how I feel right now.  His life is.

What am I willing, or not willing to do?

It’s possible that I’m willing to die trying to save my son.

Today the nurse said he would worry for me.  That was a blessing.

Thank you for visiting my blog.

22 Nov

Pain in fibromyalgia

Posted by DOGKISSES in health, invisible illnesses. Tagged: , , , , , , , .

Grouse Feathers bring good medicine

A personal experience of living with persistent long-term pain

I’m aware of pain every moment.  A kind of pain that without medication is absolutely unbearable.  A kind of pain that is hard to describe.  It’s persistent, invasive and all-encompassing.  It isn’t only muscle or joint pain, but feels like every cell in my body hurts and is crying out pain.  Sometimes I feel like I’m on fire from the inside out.

Sometimes breathing feels like I have broken ribs and knives are sticking in my heart and lungs.   This kind of pain scares me.  Doctors believe it’s the tissue around my chest cavity that causes this particular pain, which they say is due to fibromyalgia.

I live with pain that the doctors say may very well continue the rest of my life.  I’m only forty-six.  I have severe fibromyalgia and Chronic Fatigue Syndrome.  I also have other conditions that cause pain, but in comparison are easily managed.

I’ve lived with severe pain every day for about seven years.  I’ve lived with intermittent pain from various conditions throughout my life, but fibromyalgia pain is the worst, both because of the intensity and chronicity.

I wake up every morning to pain, usually a moderate level, other times severe.  I always have some level of pain.  Sometimes the pain has been so severe that after taking enough pain medication to manage it, I’ve been left in a state of mental shock from the experience of intense widespread pain.

Sometimes I wake up crying.  Other times it’s the first thing I do.  I’ve cried myself to sleep plenty of nights.  It’s not only the pain that I cry over, but also the ongoing battle to manage and accept it.  I cry because pain intrudes upon every area of who I am and how I live my life.  Most of the time crying helps.  A good cry can be a positive experience.

Sometimes I have severe muscle spasms that take over my days, my nights and my life until they go away.  Hurting that bad wears me out physically, mentally and emotionally.  I can’t take muscle relaxers and narcotics don’t help spasms.  Spasms are completely debilitating.  They started a couple of years ago and each time they’ve been worse.  With a neck spasm I can’t move my head and the pain is off the scales – emergency room pain.

Sometimes I think about what doesn’t hurt.  My nose doesn’t usually hurt.

I don’t think I could live with the kind of pain I’ve experienced without medication.   I once seriously thought that I would have to tell my family it was not humane to expect me to live anymore.  I had decided during an excruciatingly painful camping trip that I could not take the kind of pain I was in and had been living with.  I had sat up all night in my tent thinking about it.

I was with my two dogs on top of a beautiful mountain.  I thought of my son and my mother.  My family.  I cried and sat there until sunrise, experiencing and feeling the enormous pain.

Fortunately, when I returned home I went to a doctor who began treating my pain.  That was five years ago.

It may be that pain will drive you crazy after a while if you don’t have a way to treat it.

Pain and managing it is as much a part of me and my life as is anything and feels like it may be the most important part.   I feel sure I’d go into shock and possibly have a heart-attack without pain medication.  That scares me.

For the most part I’m able to manage pain with medication.  I’m deeply grateful to have medication.  I’m normally able to keep the level of pain around a three on a scale of one to ten when my medication is working well, which includes not being groggy.  A level three or four is well-managed pain.

As a result of pain medication, I don’t have as many episodes as I used to of the kind of pain that feels like I can’t breathe or that I’ll have to go to the ER.  Sometimes I miss a dose and fall asleep.  That’s usually when I wake up with my entire body on fire and my chest cavity feeling like a mule kicked it.

I get scared of losing my doctor.  I’m afraid I would get a new doctor who wouldn’t understand how severe my pain is, like five years ago when many doctors didn’t believe in fibromyalgia.  They didn’t know what fibromyalgia was and would often blame it on psychological factors, such as stress or depression or they called it a, “trash-can diagnosis.”

I’ve tried nearly every non-narcotic pain reliever; including most of the antidepressants used to treat pain, along with the anti-seizure drugs Neurontin and Lyrica, but absolutely could not tolerate the side-effects.  I eventually began treatment with a tried and true pain reliever, which treats the pain with relatively few side-effects.

Several months ago stress increased in my life and so did the pain.  Any type of stress directly, and these days immediately, causes fibromyalgia pain to get worse.

I also went on another camping trip that physically set me back.  I lifted logs to have a fire.  Big heavy wonderful logs of Locust wood that I kept burning for four nights and five days right up ‘til the last few hours of packing to leave.  I did plenty I shouldn’t have done.  I hadn’t been camping since that one trip almost five years ago.

Being able to camp is something fibromyalgia has taken from me but evidently, I rebelled.   It didn’t work out too well.

As a result of high levels of stress and the killer camping trip, I recently had to increase my dosage of pain medication.  I thought the aftermath of pain from camping, which was almost four months ago would go away, but it never did.

Pain is depressing.  Knowing that I might have to take pain medication for the rest of my life is scary.  I get scared of getting old because I wonder how an older body will tolerate this pain or the side-effects of medications.   I wonder how many times in my life I will have to increase the dose of pain medication.  There are only so many times a person can do this in one lifetime.  It’s all scary.

Personally one of the most difficult aspects of living with fibromyalgia pain is that it’s invisible.  The same is true with medical fatigue.   People will question and some will outright attack your character.  Some people question your intelligence and your honesty, along with your motivation to seek out disability benefits when the pain and fatigue is severe.

Personally, it has been my blood relatives who have hurt me the most.  I’m not sure what their intentions have been or what they gain from not believing that I have pain that requires treatment.  They certainly don’t understand what Chronic Fatigue Syndrome entails.

I don’t know where the silver lining in the cloud is.  I’d rather not have pain than to learn the lessons pain teaches, if that’s where the silver lining is.

Pain is humbling.  It teaches that the human body is what it is –human.

Pain begs me to take better care of myself and to care more about myself.

I grew up hearing the saying, “What doesn’t kill you makes you stronger.”  I wonder.  I’m darn tired and worn out.  I think I would be stronger if I hadn’t had ongoing experiences that felt like they might kill me.

I’m not too good at finding the silver lining in a cloud of pain.

I’m better at finding ways to cope.  Little things that make me feel better like hanging out with my dogs.  I love to rub the silky coat my young dog has.  She’s the softest animal I’ve ever touched.  She’s my tender heart.

My other dog is really my son’s dog but lives with me.  He and I have always had a strong connection so we’re pretty close pals nowadays.  I feel like his grandma.  He’s a stoic fellow, but once in a while he’ll decide to give me one little kiss, just one and it’s always a surprise, like when I come home after having been out for a while.

My dogs give me joy and really do comfort my heart when all else seems lost or out of control.  Dogs rule.  They never argue and certainly never are they mean, at least mine aren’t.  Dogs love you unconditionally, as long as you feed them, so that’s pretty cool with me.

Intentionally experiencing gratitude helps me ease anxiety or depression.

I think about the basic necessities in life –shelter, clothing, food, and sometimes little luxuries too.  I think about things I’m grateful for because it actually does make a little difference in the way I feel.  Some days it makes a huge difference.

As I write, the worst part of chronic pain is that it hurts today and I know it will tomorrow.  The best part of having to live with chronic pain is that I have access to good medical care and medication to treat it.

Maybe one day I won’t have such severe pain.  Maybe one day I won’t have fibromyalgia.  Maybe I’ll discover new or different ways of treatment that works.  One can hope because anything is possible.  Well, most anything.

Image via “The Graphics Fairy” — “Feathers -Autumn Display”

4 Oct

A part of me remains the same

Posted by DOGKISSES in family, health, life. Tagged: , , , , , , .

watch cow.

Image by tobym via Flickr

A part of me will always be the same.

“That haircut makes you look more like your old self,” my mother remarked.  My oldest sister agreed in her rather pleasing and generally consistent neutral way.   “You know, back when…”  Mother smiled remembering the past.   She spoke briefly to how I used to look.

“Actually, that was the young me,” I said, “and this is the old me.”

We laughed.  I like it when my family and I laugh together.  Being able to have a sense of humor and fun was always a part of my family experience growing up, which I believe was our saving grace and most likely still is.

Mother and I had gone out to eat and shopped at a thrift store for nearly two hours before we got to my sister’s house.  I couldn’t believe I was able to walk around a store that long.  I did start to hurt but took my medication and felt fine.  My mother was hurting by that time too, only she didn’t have medication.  She endures chronic pain.

Sometimes I feel a little guilty for having better medical care and treatment than my family members have, but then I feel a little guilty over just about everything in life.

Mother bought me little things at the large thrift store, which she clearly enjoyed.  I found a stunning little wood carving of a bird, along with a couple of unique handmade Halloween crafts.  I spent most of my time browsing the coats.  I found my son a lined corduroy one in perfect condition and myself a truly classic thrift shop gem.

unintentional designs and natural flaws

“Well.” my mother remarked with a mild reservation.

She looked at the coat I’d found with her eyebrows raised but a smile on her face adding,  “It’ll sure fit in where you live,” which is true.

My favorite part is the soft furry lining, but I do like clothes with a little creative touch or character.  My family knows this about me.

It’s good to have people who know little things about you.

Arriving at my mother’s house earlier that morning had been pleasant.  The windows were open letting in a breeze too cool for my arms, but it was quite refreshing and in more ways than one.  Before she moved to the country she seemed afraid of the outdoors.  She’s always said she didn’t want her windows open because,  “somebody could just stick their arm inside, reach in and grab her.”

Her backyard is a cow and horse pasture.  The absence of city noise and lights, with a view of rolling hills evokes in me a fantasy of sitting outside, watching cows, (which is good for the soul) and writing a novel.  watching cows is good for the soul

Mother was playing soothing, albeit country, music when I arrived.  I love it when I hear my mom listen to music.

I absolutely love it.

It reminds me of, “back when.”

The day was perfect for a family visit.  The recent rains made way for a clear blue sky and interesting sounds.  The most surprising part of the day was that I didn’t get fatigued.  The best part was sitting on my sister’s deck and visiting.  No rush, no running around, just sitting and talking.  It was a time I hope to recall in the future.

“Did you hear that woodpecker?” my sister asked.

I did but I don’t think my mother heard it.  She worked in a cotton mill for many years and says the noise from those large weaving machines impaired her hearing.  “I didn’t like wearing those ear plugs,” she’ll say.  “They just didn’t feel good.”  I imagine they didn’t look good either and my mother did enjoy looking her best, even while weaving.

I wondered about my sister when she pointed out the sound of that woodpecker.  Not that she doesn’t appreciate her yard and those trees.  I know she does, but she’s usually busy either cleaning her house or getting ready to go some place.   Sadly, she’s in pain and has been for longer than I think I could tolerate without treatment.    She’s preparing for a hip-replacement in a few weeks.

I’ve talked to her over the phone but seeing her slowly limping around struck me differently. Her lameness broke my heart.

Was it pain, I wondered, that beckoned her to listen to the peace of nature in the first days of the falling leaves.

My sister has worked every working day since she was 15 and got her working permit.  She and my other sister, who are only eleven months apart, used to earn money cleaning people’s houses when they were adolescents.

“You’re too young,” I was told whenever I asked to help.  That never changed, which one of my sisters seemed to resent, but this was not something I could help.

One time after pleading with my mother I was allowed to go with my sisters to clean a house.  I was around ten years old.  I stood between them while they washed dishes.  I knew they were basically tolerating me.   I got to pass the dishes from one who was washing and the other who was rinsing.

I dropped a fork and it stabbed my right toe.  I remember them saying not to tell the owners of the house and talking about the blood stains.  I never got to help them again.

I didn’t learn the same things my sisters did.  One learned how to sew.  The other learned how to run a riding lawn mower and finally a tractor.   I learned to ride a ten-speed bicycle.

The day was perfect for a family visit.  The leaves are falling.  The season is changing.  Our differences and shadows from the past didn’t matter.

A part of me remains the same.




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27 Sep

From the patient in pain

Posted by DOGKISSES in fibromyalgia, health. Tagged: , , , , , , .

do butterflies always sleep alone...

“I really came to talk about my pain,” I told my family doctor about a week ago.  Now I wish I hadn’t said it.

I had put off having this conversation for the past few months.  I’ve been on the same dosage of one pain medication for three years and I don’t want that to change.

After two serious injuries from accidents in October, 2009 and January, 2010, I had to use extra medication, which is a shorter acting drug.  I was able to stop taking it after a while, but the injuries exacerbated fibromyalgia pain and as a result, I had to start taking it again for breakthrough pain.

My doctor said about six months ago that it was great that I’ve maintained well on the initial dosage of the regular pain medication.  I’ve always felt good about this too, and wasn’t too concerned about needing breakthrough medication.  I thought that I was having a flare up and things would calm back down.

A few months ago my pain levels began to increase more regularly, and with that along came anxiety, in part due to my resistance to taking the medication he had given me for times when the pain breaks through my normal threshold.

I was breaking the pills in half afraid to take the prescribed amount, which is up to two pills per day, but this is only for days when the pain has increased.  I think I may have dragged out the pain by not taking enough to knock the pain out sooner.  I should have just given in and said okay, today is a painful day.  I’ll take the medication even if I have to rest in bed.  Instead, I’ve taken a little of it and kept on going.

Of course last week in my doctor’s office I failed to communicate this.

Since having gone on an analgesic medication for fibromyalgia pain, I’ve felt a particular bond with the doctor who treats me.

He became our family doctor in 2003 when my son and I moved to the area.  We both like this doctor very much.   He has a wonderful bedside manner.

I left his practice for a while, but when Tramadol stopped working and the doctor I was seeing had communicated that she was not happy about starting me on a narcotic pain reliever, I went back to my original doctor’s practice.

I told him he had to help me because I simply couldn’t live in the pain I was experiencing, which was the truth.

I’ve seen him ever since.  He isn’t scared of treating my pain, although he did ask me to go to see a specialist, the Rheumatologist who had diagnosed me with, “Classic Fibromyalgia,” but had moved almost four hours away from where I live.   I eventually made it for a visit to that doctor.

I told the doctor why I had come to see him, which was that my family doctor wanted his advice on treating my pain.  He said tell your doctor that he is doing the right thing to treat your pain.  So I did.

Now, three years later, I’ve gone into my doctor’s office and spoken of my pain.

“I think we need an expert,” he said and I’ve been upset ever since.

I don’t want an expert.  I’m sick of experts.  I don’t know why I feel this way.  I’d like to see an expert for a few problems I have, but not one for pain.   For some reason, I’m repelled by the thought.  I’m both scared and angry.

“I don’t want to go to a pain clinic,” I told him. ” I’ve heard horror stories about how they treat their patients.”

“This is a good group of people,” he said.  I could tell by the way he spoke of them that he holds them in high regard.  “They come here occasionally and give talks.”

I imagined these talks.  I imagined the pharmaceutical catering service having brought in everything you could dream of for lunch all in one sitting.  Am I cynical?  I never wanted to be.

“I’m not sending you away,” he tried to ease my anxiety, which didn’t work.  It’s the fear that gives me anxiety.  Fear of not being believed.

“I’m scared they will tell you not to give me medication,” I told my doctor.

I’ve been disbelieved, judged, accused, and criticized both inside and outside the medical community since I began having chronic severe pain, but never from this doctor who I presently see.  Having a doctor who believes me and understands that I can’t take Lyrica, which is commonly used for fibromyalgia pain these days, nor can I tolerate antidepressants, also used for pain, has been and continues to mean a great deal to me.

I also very much dislike it when a doctor thinks depression is the cause of any pain I may have.  I don’t like it when tears confirm this.  I cry easily and often my tears in front of a doctor are a mere release of fatigue from my having showered, dressed, driven and walked into his or her office.

I’ve walked out of two different specialist’s offices for other illnesses extremely depressed from the doctors blaming the conditions I was there to get help with on depression, while it was the condition causing me to get depressed.   Ironically, both doctors were not practitioners but teaching fellows.  Personally, I think they were better at teaching medicine than at practicing.

I knew when I went back to the doctor I see now, which was over three years ago, that he would believe me when I said I was in pain, which is why I went back.  Why would I want to go anywhere else after my experiences of having seen doctors straight out of a horror movie?

I don’t want to take a chance on having someone tell me my pain isn’t real, or that I can meditate it away, or who wants to try some novel drug on me, and the worst part, take me on a trip to my life story.  Been there and done that.

I don’t feel like telling strangers my story anymore, especially if it results in me being told that the pain I live with is either psychosomatic or a result of depression.

I once had parasites that came from a river where I unwisely washed my dishes in during a long camping trip.  I lost twenty pounds the first month.  I was in constant severe pain and very sick.  Every time I ate I had to find someone to take me to the emergency room.  I had a quack for a family doctor.  He liked listening to my heart-rate more than anything because he acted like he was going to faint at the site of breasts, even minute ones.

“Many women your age with your history have lower abdominal issues,” he would say as I was lying on one of his office beds screaming, bent over in the most severe pain I’d ever experienced.  He would give me a Valium and say, “You’re not dying.”  He’d walk away telling me I could lie there as long as I needed to.

I wish I had sued his pants off.  Finally, after about six weeks, a homeopathic doctor suggested I had Giardia infection.  I remembered the many horses having crossed the river by my campsite.

She said she could give me charcoal pills, but that I would be sick for a long time.  I had already been sick a long time.  I told somebody and they said you need a real doctor.  The next day a real doctor gave me Flagyl.  Miracle pills that saved my life.  In two days I was feeling better.

I got a bill from the quack for almost five-hundred dollars.  Well, of course I used what writing skills I had and told him exactly what he could do with his bill.  I never heard from him again.

I’ve had my bad days with doctors.

I wish I hadn’t said anything about pain to my doctor.  I’m supposed to see this expert tomorrow.  I already don’t like her.   I feel angry towards a doctor I’ve never met because of the horror doctors I’ve met in the past.  I’m fairly certain I’m going to call and cancel.  It’s my pain.   It’s my life.  It’s my choice.  I hope.

I’m irritated with my doctor for not stopping to hear me out, but maybe he did.  Maybe he heard what I didn’t.  I’m confused.  Did I ask for what I got?

He did stop before sending the email asking if I wanted to go ahead with the appointment.

I obviously said yes when I wanted to say no because now I have myself an appointment.  The pain doctor’s clinic has called three or four times, which I was ignoring but then accidentally answered — and confirmed! That made me mad at myself.  I did tell the person who called that I might have to cancel.  They sent me a package in the mail.  All a waste of time, money and paper I thought.

Why couldn’t my doctor just listen?  Why couldn’t I stand my ground?

“I went camping,” I had told him.   “I did a lot that I shouldn’t have done.  I know this added to the increased pain and I’m under more stress,” I said, realizing the part about the stress may not seem like anything new to him.

He did hear me.  When I said I lifted heavy logs of locust wood for three days and nights he turned from his computer, where he was typing that darn referral, and with somewhat of a surprised look he remarked, “You did?”

I reminded him that I didn’t have the breakthrough medication I needed during that trip and that I had gone anyway.

“Are you asking for more or less of one of your medications?” he responded to those remarks.

“Neither,” I said, which was true.  I was near tears,  but I stopped myself from crying.  His referral is exactly the reason I haven’t told him my pain has increased.

“I”m just trying to tell you why my pain may have increased.”

I don’t think he responded to that so I said again, “I kind of don’t want to go.”

“It isn’t punitive,” he said.  “I’d like to know if they have any ideas.  I really like them,” he added.

He has always been a good doctor and I’ve trusted his referrals.  He’s actually pretty conservative in making them and sometimes I must ask for one if I feel like I need a specialist.  This time however, I honestly cannot say that I trust this referral.  I’m scared.  I’m scared of pain specialists.

I looked at the expert’s website.  She’s an anesthesiologist at a well-respected teaching hospital.  There is mention of fibromyalgia in her area of treatment, but it’s not her specialty.  The clinic offers acupuncture and biofeedback.  I feel sure they do not offer this to Medicare/Medicaid patients, which I am.

I’ve been to other speciality clinics.  Some of them are pretty fancy places.   My insurance will pay for a one-time consultation for certain health issues but I don’t get much out of this.  One visit and bye-bye.

The experts I’ve seen at these clinics have recommended acupuncture, which was a part of their services.  I’ve responded well to acupuncture in the past and very much wish I could have ongoing treatments, but it’s expensive and I can’t afford it.  I’ve received prescriptions for it from the doctors at these clinics, even though they know my insurance doesn’t cover it and I can’t afford it.

I don’t want another experience of walking into an upscale medical clinic, with inviting photographs on the walls of people receiving massage or acupuncture, along with brochures for your reading pleasure about these wonderful treatments, while I’m well aware that I will not be able to access these services.   I’d rather stay home.

I especially don’t want to see a pain specialist, who might interrupt the good care I already have from my family doctor, which is one thing in my life I’m especially grateful for.  I feel like going to see a pain expert is like trying to fix something that isn’t broken.   Maybe it needs tweaking a bit, but not reconfigured.

I’m scared, confused and kind of irritated for feeling this way.

7 Sep

All my tears

Posted by DOGKISSES in depression, health, mental health, mental illness. Tagged: , , , .

All my tears may account for years but when I look at these photos, I can see that it was only days ago that I was smiling.   I smiled yesterday when I received a surprise phone call from a friend.

Yesterday brought a resolution to a recent crisis, but the aftermath of having gone through it has triggered an acute episode of severe depression.

Depression is something I’ve suffered with for most of my adult life but most certainly I don’t feel this bad all the time.  I couldn’t take it if I did.

I also have PTSD.   I am sure this is the root of the depression I’m experiencing.  I had terrible nightmares after the resolution.  The crisis was too familiar, which is all I’m able to write at this time.

I’m sharing these photos because the moments in time when they were taken, which was not so long ago, I was okay.  Okay meaning able to smile, eat, enjoy parts of my life and sleep.

I have laughed before and I will laugh again — maybe today but until then, I hope you like the pictures.

Thank you for visiting my blog.

traveling dogs posing for the camera

cute camp dog gives her mate a kiss

we danced around the fire at night in the mountains while camping

campdance

fibromyalgia made sure I was up to greet the morning crows!

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22 Aug

Perspectives on fibromyalgia

Posted by DOGKISSES in Chronic Fatigue Syndrome, fibromyalgia, health. Tagged: , , , , , .

Центральная нервная система-Central nervous system

Image via Wikipedia

The first thing that comes to mind when I think about fibromyalgia is that it’s been a long road of pain and fatigue that gradually worsened over time.  I don’t fully understand when I hear that it isn’t a progressive illness or disease, since over the past seven years I’ve gone from saying ouch while bending over in the garden, to having many days (possibly years worth) of being completely debilitated by pain and fatigue.

Is it a disease or a syndrome?  Illness, disease or syndrome?  I think it may be all of those.

Fibromyalgia is a pain filled life changing experience.

Fibromyalgia is often misunderstood, stigmatized and people who suffer from it are wrongly judged.

Sometimes I feel like I understand what I’ve learned about fibromyalgia, particularly that it’s a central nervous system disorder, and other times, when I’m deep in the throws of severe pain or terrible fatigue, I question what I thought I understood.  During these times, I wonder if the doctors have missed a rare disorder or another disease more understood than fibromyalgia is.

Some days I fully accept it and other days I wonder if it even exist, and again, wonder if the doctors have simply missed something that would clearly explain all the pain, the fatigue and the myriad of other symptoms I have.

I’m afraid of fibromyalgia.  Not all the time but some of the time.  I’m afraid of getting older and adding an aging body to an already painful weak one.

I believe we are human.  I do not believe that pain, sickness, illness and diseases are a result of karma, sin or character issues.  I believe humans are susceptible to diseases because we are human.

Disease can be caused by chronic stress but this cause doesn’t make it any less real.

I believe fibromyalgia is a medical entity that causes great suffering and drastically changes lives.

Fibromyalgia is not the same for everyone.

Treatment for fibromyalgia is not the same for everyone.

The view that fibromyalgia is a central nervous system disorder, Central Sensitivity Syndrome, (CSS), makes the most sense to me.

The first time I heard about CSS was when I met with a Rheumatologist, Dr. John B. Winfield at UNC-Hospitals in Chapel Hill, North Carolina.  I had an appointment with him the day before he left his position and moved to the mountains.  I wouldn’t have been able to see him again anyway because UNC-Hospitals would not allow him to see a patient for fibromyalgia more than once.  (Politics…)  I don’t think this helped him help his patients.

As I write, UNC-Hospitals doesn’t have a doctor who specifically treats fibromyalgia.  They have the department of Rheumatology, but they refer fibromyalgia patients to a family physician who often refers the patient to a Rheumatologist.

My visit with Dr. John B. Winfield remains one of the best doctor’s visits I’ve ever had.  I spent over two hours with Dr. Winfield that day.  He told me I would see his research in a few years but at the time that seemed like forever.  Now I see his research.

Finally, I hear doctors, or at least mine, talk about CSS.  Finally.

“Central sensitivity syndromes: a new paradigm…” Yunus MB, (PubMed.gov)

Excerpts from an abstract summary of the article (above link) —

“Such terms as “medically unexplained symptoms,” “somatization,” “somatization disorder,” and “functional somatic syndromes” in the context of CSS should be abandoned. Given current scientific knowledge, the concept of disease-illness dualism has no rational basis and impedes proper patient-physician communication, resulting in poor patient care.

–“The disease-illness, as well as organic/non-organic dichotomy, should be rejected.”

After having caught up a bit on the latest articles, which I find to be tiring to my brain, I’m somewhat confused.

I understand that  Chronic Fatigue Syndrome is part of fibromyalgia.  I guess you can have one without the other, but I’m not sure.  I was diagnosed with CFS before fibromyalgia.

I had Lyme’s Disease in 2003, which caused my joints to protrude and hurt very badly.  They got better except bending over never did stop hurting.

I had Rocky Mountain Spotted Fever in 2005.  I didn’t get treatment for six or seven weeks. My wrists joints were protruding again.  I was severely ill. I was finally diagnosed and took Doxycycline.

The fatigue continued.  I began to have severe low back pain.  Neither went away.  I was referred to immunologists.  They said I had Post Infectious Disease Syndrome and wrote on my records that I have CFS as a result of RMSF.  They said the disease stayed in my system so long that it caused a systemic infection that could last, possibly, the rest of my life.

I saw Dr. John B. Winfield the next summer, in June, 2006, who diagnosed me with Classic Fibromyalgia.

He spent a lot of time with me, several hours, educating me about fibromyalgia and talking with me about how to live with the stigma around the diagnosis, particularly as it is considered an invisible illness.

I don’t know where to draw the line, or if there is one, between fibromyalgia and Chronic Fatigue Syndrome.

I have all the symptoms of fibromyalgia and all the symptoms of Chronic Fagtigue Syndrome.

I could benefit from another two hour visit with Dr. Winfield.  He did mention that me doing things like taking trips to the mountains, along with a few other activities I shared with him that I enjoy doing, would be good for fibromyalgia.

Update on August, 27, 2010 —

Please see the comments on this post for several excellent links (from George) for recent new findings/ research about Chronic Fatigue Syndrome.

Thank you George.







16 Aug

Time out…

Posted by DOGKISSES in camping, health, Nature. Tagged: , , , , , .

Mystical Mountains

Sacred Oats fall Crows came to call

A magical view of those rolling green hills

those hills sure do call my name

My beloved 4-legged guardian and I walk barefoot

green grassy meadows where the ground is soft, white-tail deer roam and crows come calling

Where the Sacred Oats fall…  Crows come to call

Suddenly we danced in the night around the fire

We danced at night.

Below are some of my journal entries during my camping trip.  They speak mostly to pain and challenges.  I’m a little surprised.  I did actually enjoy myself, at times, but apparently there was more pain and hard times than I realized.  I do love those hills.  I loved some parts of the trip.  Still, these entries mostly reflect how hard the trip was for me.

–Today we are in the mountains.  Many things occurred over the past few days as I was getting ready to go camping that I didn’t like.  But I’m here.  A moment alone now as my son, a man now, and our two young friends are with me.  Of course our four-legged are here too.  Well, my moment is over.  Son is back.

–Preparing for this trip was extremely hard.  Bending over a lot while packing caused severe lower back pain for me.  I had to walk through the fatigue.  I had to dig deep inside for the will or whatever it was that I had to have, determination I guess, to keep on packing despite severe pain and fatigue.

–I fell.  Slid down a moss covered set of stone steps.  No bruises.

–Sacred oats gone bad.  I am not eating from that bowl.

–I’ve been terribly sick and pretty much having to go at things as usual without much help.  It’s been hard.  I had to do most of the work preparing this trip.  My son isn’t doing well.

–I’m exhausted.  Completely.  My pain levels are off the scale.

–It’s nice writing out here.  My dogs are lying next to me.  The young people went on bicycle rides.  It’s very quiet.

–I love being here.

–Butterflies are everywhere.

–I think the sacred oats that went bad have left us now.  I hope.

–They’re back.

–Well, maybe those bad oats didn’t leave us.

–My pain has hit hard sitting here writing.  I’ll lie down soon.

–God I’m tired!

–My son is having a psychotic episode.

–My intestines hurt like hell.

–I’m watching the last log burn.  Now this wood, well, it’s amazing!

With all the pain and frustration that came with that trip, I managed to get some time out.  I needed to get away from flat land.  I needed to go where the hills surround me.  I needed the cool breeze that always travels through those rolling green mountains.


6 Aug

Nothing else but time for fibromyalgia

Posted by DOGKISSES in fibromyalgia, health, mental and emotional health, Pain. Tagged: , , , , , .

nothing but time for fibromyalgia wellness requires strict lifestyleI’d been debilitated by a muscle spasm for five days before going to my doctor yesterday.  I would have gone to see him sooner but I didn’t have anyone to drive me and I simply couldn’t drive that far.  I’d taken my medication for breakthrough pain and was worried about not having it later in the month. I told him I’d been in so much pain that I couldn’t think without medication to relieve it.

“I don’t know if the spasm is breakthrough pain or a part of fibromyalgia or if it’s unrelated,” I told my doctor.

“Was it a real spasm?” he asked.  Sometimes he asks geeky questions.

“Yes,” I answered confidently.

“It isn’t ideal that you took your breakthrough medicine for a muscle spasm, but at that point, you really didn’t have a choice.”  He wrote something on his notepad.

Now I wished I’d called his office when the spasm started.   He wrote me a prescription for magnesium mixed with a chemical in aspirin.  He said people find relief for migraines with the medication and that it may help muscles spasms.  He said more about magnesium, but I can’t remember!  He also told me to apply wet heat, which I could have done and didn’t.  Again, I should have called his office five days earlier.  He didn’t mention replacing my breakthrough medication.  I don’t like having to ask for extra pain medicine so I didn’t mention it either.

I didn’t have much in me so to speak.  It took strength for me to talk loud enough to be heard, much less communicate any concerns or other issues I was having.  I didn’t tell him my bladder was still hurting but I was tired.  I’d been hurting for days and it wore me out mentally and physically.  Sometimes I feel like giving up.  I feel like there is no hope.  That no matter what, pain will be part of my daily life.

“You know what I told you about the central sensitivity…” he said.  I nodded yes. I can’t remember his exact words.  He spoke to the pain from the view that fibromyalgia is a central nervous system disorder, Central Sensitivity Syndrome (CSS), which I think suggest that the level of pain I’ve experienced from the muscle spasm is part of fibromyalgia, but not necessarily a symptom.

I had a college mentor who told me many times, “If you can’t explain something then you don’t understand it.”  I guess I don’t fully understand CSS.  I understand the general concept, which is enough to know that people with fibromyalgia experience more pain from stimuli, such as a muscle spasm, than do people who do not have fibromyalgia.

I remember my good doctor saying something to the effect of the spasm having caused a blast of pain from my brain that I felt all over my body.  He said that would explain why I was feeling so crappy.  I’d definitely had a blast of pain!

“Do you have any patients who have severe fibromyalgia, who you are absolutely sure they have it, without a doubt, who gets well?” I asked him.

His answer, which was basically yes, was somewhat surprising to me.   I may have also felt a glimmer of hope, but it would have taken a lot to get me out of the despondent state of mind I’ve been in for the past week or more.   Too bad because he’s a good doctor with a sense of humor.   If I’m quiet then so is he.  If I’m in a lighter mood then he’ll tell me a joke, usually a geeky one, but sometimes that’s what makes it funny.

“Yes,” and he turned around in his chair to face me.  “There are some people who do get better.  They are people who follow a strict routine of exercise.  They practice stretches throughout the day every day.   They follow a strict diet.  They have very strict schedules and that is all they do.  These are people who have nothing else going on and devote all their time to practicing these things.  The people who are more likely to get well from fibromyalgia are people who have nothing else,” and he waved his hands in the air for an added effect, “nothing else going on — at all — that gets in their way.  They are people with nothing else but time.”

Could I be that person I wondered the rest of the day.  I’ve got the time.  I’ve also got a lot going on. 

This morning I visited a blog with the most beautiful photos of places where people were fly fishing.  I’d like to do that, even if I didn’t catch a fish.  I wish I could go to paradise, where I would have nothing else but time.

Image of clock by Leslie, at IconDoIt, the blog.  Copyrights apply.



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