Archive for the ‘health’ Category

What is right?

My heart beats too fast and my hands shake when I think back remembering all the hospital admissions, the doctors, the pills, God… the pills!  As I write, my gut feels like it’s being ripped apart.  What if I made a mistake?

What if I made such a huge mistake that my only beloved son shall never forgive me?  And if he does forgive me, has my mistake(s) ruined some of his life already?  Has it already carved out part of who he is?

I just don’t know what is right.  I don’t know what to do.

Join a group?  There’s pretty much only one to choose from, which is through NAMI.

“Forget his liver,” I remember the young psychiatrist telling me.  Was she suggesting that I’m neglecting my son by not neglecting his liver, I wondered.  Sometimes psychiatrists think in strange ways.

“We can treat liver disease, diabetes and Tardive Dyskenesia,” the young psychiatrist said, “but we can’t treat schizophrenia without antipsychotics.”

That part about treating liver disease, well, I don’t think so.

My son’s liver panel always changes when he takes the type of medications recommended by psychiatrists.  His family physician told him, once in front of me, “never take antipsychotics again.”  He told us that they would damage his liver.  

In response, my son’s ACT team social worker and a psychiatric intern at the hospital told me that we should get a new family doctor.

“You must go against your gut,” I’ve been told by professionals in the psychiatric community.  “You must abandon everything you understand as a mother in making decisions to advocate for treatment,” a well-respected social worker once said to me. 

“Treatment,” ultimately can mean forced injections.   The social worker added that if she was a parent in my shoes, that she truly didn’t know what she would do.

“We’ll commit him for not taking medicine and keep him there until he gets so tired of it he will do anything to get out, even accept regular injections of anti-psychotics.  We’ve had to do this many times with patients like your son — who are consistently non-compliant in taking their meds,” his psychiatrist has suggested.

“He wouldn’t have rehabilitation there,” I told the psychiatrist after she threatened to send him there if he, “made one wrong move.”  My son is not a criminal.  He gets sad and lonely and out of sorts.  He isn’t out breaking the law. 

The doctor had a bad attitude and let her personal feelings get too involved.  She was angry because the day before my son had gotten out of a car in town, instead of going to his apartment, while riding with one of the team’s social workers.  He’s an adult and can get out if he wants to whether anyone likes it or not.

“The only thing he would be able to do up there since the psychiatric rehabilitation unit is full would be sit in their community room all day, watching television with patients who are much worse than he is,” I told her.  She reminded me again that this was an effective technique to get some patients to decide to take medication.

I feel like I’ve had to give my son over to the enemy.  I feel like I agreed to join them too — but never with my whole heart or without the ongoing feeling that there must be a better way to do things than the way our modern-day psychiatry does them.

I stopped going to the support groups because there is a collective attitude that supports denying another person’s human and civil rights.

I once told my son’s psychiatrist about research suggesting that people with diagnoses, such as schizophrenia, can recover.  She hadn’t heard about the studies nor had she ever read anything about treating schizophrenia in ways outside of antipsychotic medication.   Personally, I find it disturbing that she’s been a psychiatrist for more than twenty years, yet hasn’t taken time to read about other forms of treatment. 

We need an alternative.  My son and I, and possibly many other families, need people to join an exploration in healthy ways to treat “mental illness” and we need to start a conversation about recovery.

“What causes schizophrenia?” someone asked a famous psychiatrist who was speaking at a meeting I attended.

“Nothing,” the doctor replied.  “Nothing and everything causes it.”

I don’t have the answers.  I do believe that if we had places where we can find what a former professor of mine called, “The Three Ms’,” that healing could happen.  “Meaning, Mastery, and Membership,” he called them.  “People will go crazy without these things,” he said to our class one day.


Thank you for visiting Dogkisses’s blog.

Fibromyalgia misunderstood.

my magic bike

“He said you are very sweet,” the physical therapist said during my assessment.  I missed some of her words, due to a language barrier, but I heard the last part of the sentence when she said, “but he said you have not shown much improvement.”

I felt insulted.  Waves of emotions swelled up inside of me.  I’m sure she did not intend to insult me but I felt it anyway.  I had improved! Wasn’t that in my records I wondered.

I’ve had treatment for fibromyalgia pain there twice.  The first time I went to the warm therapy pool for a couple of months and they are right, I did not “improve,” at least not in the way my insurance company wanted me too, which I guess meant that I was cured.  I did have a great couple of months but insurance companies do not count this as improvement.

The second time I went there for fibromyalgia pain was about six months ago. My therapist and I decided together to do dry-land therapy instead of aqua-therapy, even if it meant me tolerating a bit more pain for a while.

I began to see a pretty big difference in my level of pain around the fourth week of doing the exercises.  My therapist is great, especially because he is well read and current in his knowledge of fibromyalgia.  He does not believe in causing pain.  I like that.

As my pain level went down my mood went up.  I really liked that!  Suffering from depression all the time is depressing.  I began to feel hopeful, feeling like I had some control, like there was something I could do to make things better.

Deciding I was ready to do my exercises at home my therapist gave me pictures and the long rubber bands to take with me.  I did well for several weeks.  I did my exercises, got in time on my magic bicycle and of course walking my dogs.  I could see muscles forming on my somewhat stringy arms and legs.  I was getting stronger.

Then I had a setback in life.  A really hard setback.  One that caused me so much grief I stopped doing my exercises.  It didn’t take long before my pain level was rising and my muscles were disappearing on me once again.

But what about the months I did so much better I was thinking while I was in the physical therapy assessment the other day.  What about the fact that for a while, I did improve, which means that I can improve?

After talking with her a couple more minutes I realized she didn’t know why I was there, which was because I hurt my arm and shoulder when I fell off my magic bike on Halloween.  She thought I was there because of fibromyalgia, again.

I explained this to her but she asked me three times if the pain was from the bike fall and not fibromyalgia.  I wondered about that.  I thought me telling her one time, along with the fact that she had a referral from my family doctor as to why I was there ought to be enough.  Did she think I was making up the accident? I pulled up my sleeve so she could see the gash in my elbow, which apparently convinced her.

The other therapist had never sent me out of there in pain.  This woman did and I hurt for two straight days.  I felt like she did not believe I was in the amount of pain I was in.

Presently, I can only lift my arm halfway up from my side.  Doc says this is from the, “tendon adventure,” I went on.

Many things she asked me to do hurt.  My family doctor had examined me and discovered gently without causing me pain which tendon and ligament he believed to be the ones that went on the “adventure.”  Each time I said, “that hurts,” he stopped.  But the PT I saw would just look at me when I said that hurts as if she did not understand.

It was a frustrating experience.  I was upset when I got there because of the crazy guy I had a crazy relationship with.  She blamed my nervousness on fibromyalgia but I knew what was wrong with me.  It might make the fibromyalgia worse, in fact I’m sure being upset does, but it wasn’t fibromyalgia that had me so upset.

“You are nervous.  You can’t relax,” she kept saying as she held my arm in positions that were really hurting me.  Well, no shit!

Finally she said she would end the session with the machine that sends electrical stimulation to the nerves.  I’d had it on my neck and back before and never had been impressed but also never felt any pain so why not I thought.

That thing felt like knives stabbing in me!  I was surprised and so was she.  She also laughed just a little when my legs came up against my chest after she had turned it up a notch.  I however did not laugh!

I became more distressed.

I told her I wanted to have aqua-therapy again.  I knew my therapist would be in the pool.  I also asked her if she would consult with him.  I’d already decided I was not going to come back and have another session like that one.  She was nice and when she came back from talking to him she had papers for me to sign.  He had agreed with me on the no pain part and that the warm water exercises would be a better approach since I am in so much pain.

Thank God for the few good doctors.  Thank God for the few good medical professionals who study and keep up enough to know they cannot assume they fully understand fibromyalgia.  It is the doctors and other providers who realize this who are the best ones.

Medical professionals who think they understand and have all the answers regarding fibromyalgia, while the smartest scientists are still scratching their heads,  are the ones who I am leery of.

I didn’t like it when that physical therapist, even though she was nice, kept on blaming my upset that day and the pain in my arm on fibromyalgia.

“You have fibromyalgia,” she said, “so you cannot relax.”

I had a boyfriend who was a narcissist I thought to myself and that was why I couldn’t relax that day.   I had spoken to him only hours before!

She was also pulling my injured arms in ways that was causing pain, which was not causing me to feel relaxed.

I’ve had many things blamed on fibromyalgia that shouldn’t have been and had fibromyalgia used to explain other things that are not fibromyalgia.

It’s a crazy world sometimes!




Fibromyalgia HURTS!

“How often do you wake up in pain,” my good nurse asked.

“Pretty much every day lately,” I told her.

Her question was the first thing that came to my mind today as I was waking up. 

I lied there for the first few minutes,  as my brain processed how much pain I was feeling.  I thought about my medication and how it was only steps away.

Having overslept, I was an hour late with my dose and when I woke up, there it was!  Severe Pain all over my body. 

It’s hard to know how much pain to accept, tolerate or live with, when you live in a certain amount of pain all the time.  It’s also hard to recognize when pain has worsened until it eases up and I think wow — I was hurting a lot!

I decided about three years ago to take medication for widespread ongoing pain.  

“Pain and Living,” is one of my posts in this blog, which was written about the time when I decided that enough was enough.  I could only tolerate so much pain.  I had met my limit.

I wanted a chance at living my life.  I began to notice a difference in the quality of my life right away after going on medication for pain.

I was doing well with the medication.  This means the level of pain I was experiencing was much lower and at times, managed well enough that I could do things I hadn’t been able to do in a long time.

Things were going pretty good and then came life.  Regular ordinary life.

For me, regular ordinary life includes intermittent crises.

Stress triggers fibromyalgia and fibromyalgia is stressful.

My most recent stress is that I took a hard fall from my magic bike.  

Within a ten-day span, I went from having a very sore elbow, shoulder and back, to waking up with severe back pain and finally feeling pain in every place in my body that has tissue.

Fibromyalgia covers a lot of ground.

Yesterday I was able to do some house chores.  Some days I wake up and realize I’m able.  I know I’m supposed to pace myself, but when I get these able days I try to catch up on things, especially dishes and bathroom chores.

Laundry is the hardest because of lifting clothes, out of the washer – into the dryer – out of the dryer – then folding them.  Standing in one spot is hard too, which makes cooking and doing dishes a painful and/or fatiguing experience.

My sweet dog, a great insect hunter, barely brushed against my femur bone when I lied down after my chores and it felt like I was kicked in an already bruised spot.  Fibromyalgia pain sometimes feels like my whole body is bruised.

My insect hunter, along with our other 4-legged relative, have been lying as close to my body as they can get over the past two weeks since I fell.  They’ve literally had me locked down on the sofa a couple of times.  The big one lying across my feet and the little one, only 45 pounds, likes to get anywhere she can and if that means on top of a leg or an arm, then that is where she gets.

Last night, after my day of chores, I woke up about 9pm on the sofa.  Both dogs around me.  My body was hurting all over.  Moving was a struggle.  I budged one of the dogs and she didn’t move.  They were sleeping good.

I had overdone it with the laundry for sure!  I’m not very good at giving in to rest.  I truly needed to have that as my top priority.

By the end of today I cried some.  I had walked the dogs.  Not as far as they needed to be walked, but it was nice and we got a little sunshine.  I let them smell where their little noses wanted to go.  Lots of people just walk their dogs, but I let mine stop and smell.  I once read where it’s good for a dog’s olfactory system to smell things every day.  That made sense to me and I like things that make sense.

Dogs have what the native Americans call good medicine.  Their medicine is loyalty.  They give.  This is what they do.  They give.  They are wonderful nurses!

Pain is stressful.  It is tiring.  Living with it all the time is depressing.  It just is.

“How often do you wake up in pain?”  My nurse’s question lingers in my mind.

How often is too often?


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My magic bell and fibromyalgia

with fibromyalgia injuries take longer to heal

intact, after the fall

My magic bell was the first thought I had after I hit the wet pavement.  Did it break I wondered?

As you can see from the picture here, it did not break!  Nor did my head which is good ’cause I didn’t have a helmet on.

“You know how it is with you.  Because of fibromyalgia when you get a localized injury it spreads to other areas,” my doctor said.

“Well, umm, how long do you think my back will hurt?”  I knew the question was one he couldn’t answer.  I don’t know why I asked. He just looked at me.  I don’t remember if he said anything.  I think he simply nodded his head to communicate that he didn’t have a clue.

It was my elbow that got cut open.  My shoulder hurt and my knee,  but after a few days the rest of my body began to hurt.  I was in a great deal of pain as I sat there with my family doctor.

I know you can’t see any bruises I told my doctor, but my body really does hurt.

With a tender tone that was much appreciated he said, “I believe you,” and I knew he did.  He believes me when I tell him I am in pain. This is a blessing when you have an illness that is not only misunderstood but also denied by some as being a true medical entity.

Fibromyalgia.  I think I am mad at this word!  This medical entity!  If I was superstitious or believed in demons possessing one’s body and soul, then I would sure be having an exorcism performed!  But I don’t believe in that, nor do I believe, at least in my rational mind, that I am being punished by God.

Having been brought up in the south with a strong Southern Baptist influence, I must admit that I do actually think and sometimes feel that I am being punished, which I believe is a direct result of what I learned about God and Jesus.

My grandmother told me that Jesus was watching me all the time and that he knew every single thing I did.  Well, that right there shaped and formed a large part of my world view.    I think this must get in a person’s brain forever, these things we learn as children.

When I am in severe pain or have been too fatigued to do anything for days on end, even think, sometimes I find myself lying in my bed, crying out to God and apologizing for all my sins.  I ask why and how am I supposed to do anything if I have this illness that at times renders me totally useless!

My rational mind tells me I’m not being punished and that I am a human being who is not immune to diseases or illnesses.   The pain I live with, the fatigue and the depression because of it all,  is part of the human condition.

I didn’t feel my elbow for the first minute or so.  I hadn’t felt it yet when my son said, “Mom, uhh, you did something to your elbow.”

I lifted my head attempting to get up.  “Mom just lie there.  Did you hit your head?”  I wasn’t seeing stars but walking back home with my son walking behind me with our bikes I couldn’t move my arm.

“I think there is a rock in there,” my son said and that’s when I felt dizzy.  A rock in my elbow.  The thought of it was nauseating to me.  I’m used to pain but not this kind of pain.

My doctor who is gentle and understanding was on vacation when I went to get my stitch out.  The doctor I saw was not like him at all!  I think she thought I wanted pain pills but I told her I had plenty.  I wanted to know if I had hurt my back because it was hurting.  I asked her to examine it, which she did.

“I think this is fibromyalgia.  It’s definitely tissue related.  You’re thin and when you have a traumatic fall like this, with fibromyalgia,  it can…”  I don’t remember how she worded the rest but I didn’t need to hear the words.   They are all the same.

If pain is due to fibromyalgia then basically this means it can behave any way it wants to.  It might be there a week or six months.  It might be localized or widespread.

Sometimes I guess I wish the doctors would say — oh this is something we can fix — and give me a time frame as to when I will be feeling better or recovered.

Update on July 11, 1010 The doctor says that a ligament in my left shoulder and a tendon somewhere around the bicep were strained and pulled.  It still hurts when I move it certain ways.  I fell on October 31st, 2009.

Fibromyalgia, Attitudes and Acceptance

The Buggy Ride

Find Something Fun to Do

Fibromyalgia, as with any serious and chronic illness, can drastically alter your life.  Mine has certainly changed.

I had a business planting flower gardens to attract butterflies, which I totally loved.  Being a butterfly (and hummingbird) gardener was a big part of my identity.  There were many things I identified with and didn’t know how much until I couldn’t do those things anymore.

I remember when physical pain first started to concern me.   I would go out to my garden every day to do something.  One day I noticed how stiff my joints were.  I bent over and felt pain in my hips.  Then it started hurting in my ankles.  It was a new type of pain that I had never experienced before.

I’d been bitten by a little deer tick earlier that summer.  Little did I know this might change my life.

One doctor said I might have fibromyalgia, even though hardly anyone talked about the condition at the time.  It was nearly a foreign word.

Due to inadequate health care where I was living, I didn’t get to see a specialist.

I had dealt with arduous episodes depression in the past.  I had already in many ways, gone through a process of elimination as to what I identified with in life.  I stopped my gardening business and later went back to college part-time.

I moved to a metropolitan area after the tick bite that summer when the joint pain had started.  I believed the health care would be better and I think it has been.

I was bitten by another tick in 2005 and I was infected with Rocky Mountain Spotted Fever.

The doctors diagnosed me with Chronic Fatigue Syndrome and later, fibromyalgia as well.  By 2006 my life had turned upside down and illness defined every moment I lived.

Just about everything in my life has changed.

I can’t imagine, not as I write, what kind of job I could hold down with the levels of fatigue, brain fog and pain I’m living with.

I certainly can’t plant gardens anymore.

My hobbies are less active. My walks are slower.  I let my dogs walk me more, instead of me walking them for my cardiovascular workout the way I did before illness.  We go slower and stop more often.

Time is different too.  I can’t plan for events like I did before, which means I miss out on many things I once enjoyed doing.  I don’t know if I’ll be in pain two weeks from now or even tomorrow.  I could wake up so tired tomorrow morning that brushing my teeth will feel like I’m climbing a mountain.

I am grateful to receive disability benefits. I have health insurance.  It’s pretty hard making it on a low income.

Some people look down on those of us who receive disability benefits.  People complain about their taxes, but I pay taxes too.  Every day in some way I pay.

If a person can walk and talk then some people accuse her or him of being lazy, enjoying sitting home, doing nothing;  all just to get, “a check.”

The monthly income from disability benefits is important, but the health benefits and housing opportunities are a crucial part of disability benefits.

I was once a firefighter too.  Part of my identity had always been that I was physically very strong.  I was proud of this and enjoyed recreational activities, especially while raising my son.

Another part of my identity was being able to handle a lot of responsibility.  I was a single mother who worked hard and I burned the candle at both ends.

An expert in fibromyalgia told me this is the case with many people with this condition.  The majority of patients, he said, never were the kind of folks who sat around all day doing nothing.  Just the opposite for most of us.  We were athletic and go-getters.

I grew up in a very orderly and clean house, which is how I prefer things, but that’s one of those things that changes — preferences.  I’ve had to give up many of my preferences.

I hear all kinds of remarks from people who don’t understand what they can’t see.  I learned from having depression that having an invisible illness, such as fibromyalgia brings stigma and misunderstanding.  Many people don’t believe what they can’t see.

People say the weirdest things.

“I work in my yard (all day) because I have to.”

“I have to work everyday because I don’t have a choice.”

I stopped working because I didn’t have a choice.

“I wish I could get paid for feeling bad,” a neighbor told me.

“All you do is suck air,” a close relative remarked when learned that I was receiving disability benefits.

“You just get worse and worse don’t you.”  (Same relative).

“You sure do stay sick a lot.”  Lots of people have said that to me over the years.

Some people mock fibromyalgia.  Most people have no idea what it is.

Those of us suffering with invisible illnesses know that these attitudes and remarks are ignorant and not true, but they can still hurt.  Not only do they hurt, but they also cause us to withdraw into isolation.  We become alienated from society, our community and for some of us, from our family.

People with fibromyalgia often talk about having good days.  This means we have days when we wake up with some energy and less pain.  We can do more on these good days, which causes some people to think we’re faking illness.  If they see us on a good day, then we get accused of falsely claiming illness or disability to get out of work.

We’ve all heard people say, “You look just fine.”

A former doctor of mine once, during a frustrated conversation about pain, asked, “Where do you hurt?”

It was more of a statement than it was a question.  I didn’t know what to say.

“Well, my nose doesn’t hurt,” I answered.

She once referred me to a specialist for a digestive problem.  He was horrible!  He asked about the fibromyalgia, and then depression.  He was determined to believe that any problem I had, even the one I was there for, which was the result of an infectious virus, was all in my head; not neurological but psychological.

The doctor had suggested I go see the fibromyalgia specialist who had moved away.

“You look perfectly capable of driving four or five hours to me,” he said.  He failed to realize that I would have to go see the doctor and drive back home!

He continued and asked, “Did you walk here from the parking lot?”

“Yes,” I said, trying not to cry, but the tears were coming.

“Well, then you could drive four hours if you walked from the parking deck, and why are you crying?”

I had forgotten that I had instead ridden the minibus to the front door of the hospital from the parking lot.

“Why are you crying?” he asked again, sarcastically.

I told him I was sick, in pain, weak and tired.

I chose to change family doctors, never to see that specialist again and, my life has been much better ever since.

My current family physician understands fibromyalgia is a complex and painful condition.  He did suggest that I make a trip to the fibromyalgia specialist, but only when I was able.

I was finally able to go see the doctor.  I told him that my family physician wanted his advice.  He said to tell him he was doing the right thing by treating my pain.

He reminded me that it isn’t my fault that drugs, such as Lyrica and Cymbalta, made me sick.  Some patients cannot handle those drugs.  I’m one of them.  Some patients need tried and true pain medication, for pain.  Perhaps that is a little too simple for some doctors.

The specialist also said a patient should not be expected to live in pain when there is medication available to treat it.  He said it was neglect when doctors choose not to treat pain.

I told him about the remarks from my former doctors and nurses.  He said to stay away from those people adding with a compassionate tone and a bit of humor, “They are bad for fibromyalgia patients.”

He was a great doctor!

Even though we know more about fibromyalgia now than we did only a few years ago, there are still plenty of doctors and other medical professionals who will say just about anything other than, fibromyalgia hurts!

They’ll say things like, “It’s a label you do not want.”  They ought to say it’s a serious illness you do not want!

We’ve most likely all heard the phrase, “It’s a trash can diagnosis.”

I think many people do get wrongly diagnosed.  I’ve met a couple of people who said things like, “I had fibromyalgia for about three months.” Thinking

It’s hard to let go of all the things I used to love doing.  It’s hard accepting chronic illness.  It’s harder hearing hurtful remarks from family.

I have a few things I enjoy doing.  I started this blog, which I do so enjoy.

I love living with dogs.  They take me for walks and help me get through many hard times.

I have a “magic bike” and though I can’t ride it up hills or too far, it’s great fun feeling the wind on my face.  It reminds me of myself.

I hope if you or someone you love are living with chronic illnesses and conditions, that you can find something to do that makes your life easier and more meaningful.

Thanks for visiting Dogkisses’s blog.


dogkissesthat's a mighty cute dog!dogs never accuse you of faking anything


From the brain to the heart

invisible pathway

I was connected to the computer through a wire with a clamp attached to the tip of my index finger.   I thought about what I’m grateful for, particularly the unconditional love and companionship I feel from my furry little angels with four legs.

As I talked about my dogs the computer screen generated colors on several graphs.  Talking about them created intense colors of purple, violet, orange and blue.

The biofeedback therapist was enthusiastic about her work.  “Look!  Look how much the graphs change when you talk about your dogs!”

There was one column on the computer screen that detected activity in an, “invisible pathway” from the brain to the heart.  Talking about my dogs filled this column with a deep purple color.  

The therapist laughed and said she knew an invisible pathway sounded silly, but I didn’t care.  I’m interested in learning how to reduce physical pain and calm my spirit.  

I think the essence of biofeedback is about creating awareness of changes in the body when one is faced with stress and, changes when one actively chooses to calm the body, such as intentionally experiencing gratitude.

Outside of the sessions, I started to notice the changes in my body when I felt upset.   A rising heart rate, a familiar feeling in my gut that comes with anxiety, or the start of a negative thought pattern.  Being aware of the physical changes in my body help me to back up for a second.  It helps to see the changes before they get out of control, although I haven’t by any means mastered this practice.

Living with chronic illnesses means I need to lessen any stress that I can.  I may not be able to change circumstances, but I do have some control over how I respond to the stresses.  If I can slow down enough in a highly stressful situation to take slower breaths, then I can hopefully better choose my battles.

If I see myself falling quickly into depression, sometimes I’m able to think my way out of going too far down or staying down too long.

“You have to think grateful thoughts,” the biofeedback therapist told me.  “Positive thinking does not produce the same effects as does grateful thinking.”

I think of my dogs when I want an instant dose of gratitude.  Living with chronic illnesses has shaped my life in a way that isn’t always easy to accept.  Dogs offer an unconditional kind of love and understanding that’s like a golden elixir to my spirit.

Practicing gratitude helps me with depression.  It helps me to feel more accepting about things that I cannot control.  Feeling grateful helps me keep my chin up.

Thanks for visiting Dogkisses’s blog!

Image link:

http://commons.wikipedia.org/wiki/File:Descartes-reflex.JPG