Knowing your limit

We all want to say yes, do it all, have it all. We all have some sort of limitation whether it be Fibromyalgia or something else. Those of us that “suffer in silence” from something we can’t see have it just a little bit tougher. People don’t see an amputated limb or a limp, they see what appears to them a healthy individual.

As a result it’s left to me to explain my limitations. Some people probably think me unreliable because sometimes I just wake up to sore to do the thing I wanted to do that day. I feel bad because I was always raised to keep commitments but sometimes I just can’t. It’s not that I am not strong enough or because I’m suffering from a flu, it’s because I know that if I push the envelope too far I will pay for it later.

Yesterday was one of those days. My arms and lower back have been very sore. I planned a fun dive with a friend and I was really looking forward to it. But when I woke up yesterday morning I could just tell I wasn’t going to be able to do it all. I spent Saturday and was to spend part of Sunday in class for my EFR-I credential and I just knew that diving and pushing it was a bad idea. Luckily she was understanding and said she was thinking of canceling as well. So I was saved from feeling guilty.

The limitation frustrates me to no end. I want to be able to do it all, and lately I have been. Because I have been doing so much my body has been telling me to slow down. So, rather than go diving, I came home and took a nap. It felt good to rest and I felt an instant relief when I layed in my bed. It’s an “ahhh” feeling.

The holidays were so crazy and they flew right by. I worked 3-4 days a week in addition to my duties as a wife and mother. Now that’s done and had a relatively slow week last week. When I slowed down and took a day to catch up around the house is when I felt it. Starting tonight I have the instructor development course which will run 4 nights a week plus weekends for the next 3 weeks. After that I have the Instructor Exam which is an entire weekend. So I have to save my energy for that. I have to discipline myself, go to bed early and rely on some help from my friends and my husband. Hopefully he knows that he will be doing most of the cooking/cleaning and kid chasing for the next 3 weeks. John is incredibly supportive and has been alongside me through the diagnosis and treatment. He knows, sometimes before I do, when I am getting run down. He’s usually good at helping out.

I’m excited for the things to come in the coming weeks and I think I’m prepared. All I need now is for my body to hold up to the demands of the course.

I have experienced the tender points in my elbows for the first time this week. They are sore to move around and so is everything else it seems. But this is the first time experiencing this particular pain. My feet have been pretty sore too, at times it makes me limp. I’m hoping for the some relief with the new shoes I ordered.

I try very hard to manage the pain and I usually do pretty well with Yoga poses, the TENS unit, and when absolutely necessary pain medication. I don’t take motrin because too much of that will give me and ulcer. Tylenol isn’t a good option either because long-term use of that will trash my liver. So I try my best to manage without medication. I do have days though where I’ve tried everything else and I have to submit. I count myself lucky that I don’t need heavy narcotics like Vicodin or Percocet. The best pain relief for someone with Fibro is to remain well rested so I have to work on getting to bed earlier and grabbing a nap where I can.

So here’s hoping the next 3 weeks go smoothly.

Pain management- all the tools in the toolshed

It’s been a rough week in my world.  I’ve been working and its physical labor.  I love what I do and its all worth it when I hit the water.  I am thankful to have had several good months of low pain levels.  The Lyrica has been doing it’s job and I had almost forgotten what it’s like to use several methods in collaboration to control the pain and stiffness. 

I think it’s important to remember that prescription medication is not going to work all by itself.  It’s also important to note that non-pharmacological treatments are beneficial to overall health.  People who suffer from chronic pain end up running out of medical interventions and because of that we often swear by other methods.   So, for those of you with chronic pain, here are the tools that I use.

1. Lyrica
2. Tramadol
3. Hyland’s Muscle Therapy
4. TENS
5. Heat and Ice alternated at 15 minute intervals
6. Yoga/Deep Breathing 
7. OMT- manipulation therapy provided by my doctor.
8. Distractions

Each one of these methods helps in a different way.  They Lyrica keeps the pain down on a good day so that I am not incapacitated as I used to be without it.  Often, when I start feeling achy it’s when I am out of the house so the tramadol can help hold off the worst of the pain until I can get home.  The TENS is used to block the pain signals to the brain.  It does this by delivering small electrical pulsed directly to the effected muscles.  The effect lasts only as long as the machine is in use though.  Heat and Ice help also to relieve the muscle tension.  While there isn’t a dramatic result to be felt, I do believe it helps over the long run in shortening a flare.  Yoga is pivotal because the deep breathing along with the stretching can work wonders.  When you stretch it forces those muscles that are balled up to stretch thereby reducing tension and pain.  OMT or Manipulation therapy is similar to chiropractic care.  But, my insurance doesn’t cover chiropractic.  But, my doctor happens to be a doctor of osteopathic medicine who can perform this.  Distraction is perhaps the single biggest tool.  As long as I am moving around, for the most part I can push the pain aside.  But, as soon as I sit down I feel it. 

I do my best to work around the pain but it’s not always possible.  Sometimes that pain wins.  Lately, I have been lax with my Yoga practice and it’s catching up with me.  I called the doctor this morning and made and appointment for OMT on the 21st.  I also left a message for my doctor and he called me back.  For the time being he gave me flexeril.  I don’t want a stronger pain medication because of the potential for dependence.  Unfortunately for me I’m allergic to Coedine and because of that my options go from tramadol to oxycodone.  The middle of the road narcotics are all off-limits due to my allergy.  There are, of course, a few other medications that can be used but I don’t really want them. 

Months ago I explored trigger point injections and was told by the doctor to “suck it up”.  I received quite a lecture and I wasn’t happy about it.  When I go see my doctor on the 21st I plan to ask him if there is another pain management doctor I can see or if he can specifically note that he wants trigger point injections. 

For now though, I have to lay low.  That’s the hardest part for me.  Not being able to do the things I want to do with my kids or not feeling well enough to cook dinner.  One thing I see now is that I have had this fibromyalgia as long as I can remember.  So I’ve gotten good at coping and compensating.  The trick is to communicate to the doctors that the pain is killing my quality of life.  I hope to do that on the 21st and also to get some relief.  But, until then the tools in my tool box with just have to do.  I just hope that I don’t get told “there is nothing else we can do” because that puts me sitting life out on the bench for longer than I would like.  But, whatever the outcome I have to take it one day at a time, hope for the best and plan for the worst.  

 

How do you explain it?

This blog has been on the back burner for a couple of months now.  I’ve been having one of those honeymoon periods where I feel really good.  Apart from some minor pain and some tight muscles in my hip I’ve been feeling good.  I have been able to go about my daily life and almost for get that I have fibromyalgia.  I’m thankful for that time. 

Unfortunately, the pain comes in cycles and it’s not predictable.  Most would say that I “overdid it” but really I have been doing the same things and more for weeks and I’ve been fine.  So the timing is anyone’s guess. 

I tell people about my “disease” freely and it’s not to get sympathy.  It may come up in diving when a diver has a medical condition that they have to overcome.  Sometimes people ask me how I like my BCD because it’s lighter weight and a back inflate which differs from the mainstream.  They are used to seeing a certain style and they ask what I like about it and I often tell them why I chose it. 

You may have noticed that I put the word disease in quotations.  I did this because I often don’t know what to call it.  To me, the word disease implies that I have the flu and I will eventually be cured or it will eventually disable or even kill me.  But that’s not the right word because fibromyalgia isn’t curable but neither is it necessarily progressive and it doesn’t really effect the actually strength I have.  I have struggled hard to accept this but it’s not going away and I have the strength it’s just going to hurt like hell sometimes. 

I sometimes use the word disorder which is probably the closest word to correct.  Even that isn’t perfect though.  Disorder often implies a more chronic condition but it still implies that it can be fixed.  The term “chronic condition” applies I suppose but I don’t like that one either.  Honestly, I think there just isn’t a good word to use that doesn’t trigger a pity response.  So, most often I tell people “I can let it beat me or I can take control and live my life”.  That’s what I really strive for, to live my life on my terms as much as humanly possible. 

As much as I try there are days when the fibro wins.  A few months ago I noticed a strange pain in my feet after I dive.  I didn’t think much of it at first.  The pain wasn’t bad enough to stop me and, unlike my fibro pain, wasn’t constant.  After about 3-4 weeks, about the time I started Divemaster, I went in and had an x-ray just to confirm that nothing was broken.  After about 4 more weeks the pain was still there so I went back to the doctor.  Even a chronic pain patient knows that if it was nothing it wouldn’t be going on this long.  She listened carefully to me and I asked if it could be a stress fracture.  She seemed to agree that was likely since stress fractures are often missed on x-ray and don’t show up until 6-8 weeks later if at all.  She she ordered a bone scan.

I had a bone scan last week because I have been having pain in my right foot for about 2-3 months. It seems to get better for a while and I keep thinking it’s getting better. The I go and do something and aggravate it and it hurts again. In fact, each time I aggravate it it’s a little more painful than that last time.

I finally got tired of waiting for it to heal and went in to the doctor’s office. Two months ago I had an x-ray that didn’t show anything.  Come to find out, that’s rather typical of a stress fracture. Stress fractures are like a crack in the bone.  They often don’t break the bone completely in two and there are different schools of thought on how to treat it depending on the severity of the injury. 

Sometimes they put the effected limb in a soft cast or boot and sometimes they even use a plaster cast.  I feel lucky that the injury, while painful, doesn’t require either of the above. 

The bone scan consisted of getting an injection of contrast and then coming in 4 hours later and having the scan done.  The scan looks at the bones and detect the small cracks that are seen with stress fractures that x-ray can’ detect.  The whole scan took about 20 minutes.

After a week of waiting I talked to the doctor’s office and go the results.  I’ve already said that I have a stress fracture and it really wasn’t a surprise to me.  I was surprised that I was told to rest, no running or jogging but swimming is ok.  So, I can keep diving unless diving aggravates the pain. 

Unfortunately, I think that I got the injury from diving and carrying all that heavy gear and rolling an ankle a few months ago.  Since diving is my passion these days, this stinks!   I really didn’t get any idea how long it will take to heal from the nurse.  Now it’s a matter of what I am willing to sacrifice.  Not running and resting a doable for the most part.  Not diving is not really doable.  I’m hoping that I can still dive whenever I can carve out the time.  I purchased and ace wrap to wear daily to minimize the movement of the foot on a day-to-day basis.  Sometimes I’m not sure why I even bothered to get it checked out since the diagnosis basically does nothing for me.  

More recently, I’m having a flare that I, as usual, have been pushing through for a couple of weeks now.  I started to feel the pain in my neck and shoulders where it always settles about 2 maybe 3 weeks ago.  It starts out as just a little pain at the end of the day.  Slowly it creeps in at different times of day and becomes more frequent.  I’ve been seeing, or rather feeling, the signs, but I’ve been ignoring them.  I wanted to pretend it wasn’t a flare but just a little bump in the road.  That worked for a while but gradually it’s gotten to a point where its pretty much a constant pain and stiffness. 

I can go about the day-to-day, put it aside for a time, but it now refuses to be ignored.  I went to work today and I was talking about a night dive with some of the people with the shop.  I left the shop and told them I would play it by ear and see what was going on at home.  By the time I made it home I knew I was sore.  It wasn’t until I sat down though that I really felt it.  I am definitely in some sort of flare.  I hope and I pray that I don’t get to where I was last fall. 

You know, pain is the body’s way of telling you to knock it off.  The problem is that I live in some degree of pain every day so my body is basically telling me this every day.  Has been for as long as I can remember. 

The difference between today and last fall is that I know what’s causing my pain and I know how to ease it.  So, tonight I stayed home because, to be perfectly frank, I hurt like hell.  My plan now…lay low as much as I can this weekend.  Heat, TENS, pain meds.  I also need to set and appointment with my provider for OMT and that may help.  I had hoped to put that off until the kids were back in school but I guess that won’t work. 

It’s times like now that I wonder what my chances are at ever having a decent career since I will always have these flares at random times and most employers wouldn’t really say I’m sick.  I don’t know what happens as I age.  Do the flares get worse?  Do they come more frequently?  Generally speaking, most things to get worse and more frequent as we age and our body declines after the age of 40.  Geez I’m almost there. 

Right now though, I just want my nice soft bed.

We all know what we’re supposed to do…

but most of us don’t do it. 

I’m trying to get on the weight loss bandwagon.  But every time I get one foot on board something comes along and throws me off.  Most of the time its me.  I dread going back to tracking everything I eat.  It makes me a slave to my computer and takes away from my day big time.  I hate not being able to eat out because sometimes with the kids and things going on.  I have trouble with portion control also.  I can measure the food and put it on a plate but I have to retrain myself to stop eating when I’m satisfied and not stuffed.  I have to redo all my recipes and bring out new ones.  I meet opposition from my husband and kids on the new recipes because they are new foods and some of the rich flavor is taken out and replaced with something different. 

I have to contend with horrible cravings for greasy, fatty, sugary foods.  I don’t know what causes them but it’s a big sabotage. 

I don’t lack reasons for wanting to lose weight.  I want to feel better about myself and right now when I look in the mirror I’m not getting that at all.  I want to be healthier and have less pain.  Of course there is the big motivator of looking better in a swimsuit, especially since we wear them all the time in Hawaii!

I think what is so frustrating is the fact that my activity level is pretty good and it has increased exponentially.  I am a hiking. biking, yoga fool and still the scale doesn’t budge. 

Over the last 2 weeks I’ve seen the scale creep up about 3 or 4 pounds.  I have always had some fluctuation in weight during different times of the month.  This month I felt bloated for about a week before my monthly cycle actually began.  I had been holding steady on the scale and while I want to lose weight overall I was feeling good about not gaining because I was feeling my clothes fit a little looser which made me feel like I was at least moving in the right direction. 

So, let me connect this with fibromyalgia.  People with fibromyalgia have issues with weight for several reasons.  The medications associated with fibromyalgia tend to increase appetite and give a person “the munchies”.  Activity level is affected because of the pain associated with the disease.  Irritable bowel is a factor in fibromyalgia.  I experience all of this. 

I know the best solution to weight loss is to cut fat and calories over the long-term.  But like most people who struggle with weight I have trouble doing this long-term.  I lose the weight and then I get lazy and gain it back.  The older I get the harder it is to get the weight off. 

Again, like other people I’m always looking at the latest weight loss strategies and products.  There are so many things out there that claim to help with weight loss but a lot of them are stimulant based.  Ephedra was taken off the market but that hasn’t stopped these companies from putting other stimulants, such as caffeine, in their place.  Other products claim to block fat absorption, but with that comes a whole new challenge.  Often times these things block fat from being absorbed which is great, but they also tend to cause diarrhea because the fat is pushed through the system. 

In our society we all want a quick and easy solution.  We all want a pill that fixes everything.  Everyone is busy these days so something that fits our lifestyle is a must.  That’s why things like “nurtisystem” or “jenny craig” are so popular.  They take the work out of dieting.  But, they come at a price. 

What has worked for me in the past has been “weight watchers” or “spark people”.  I love that there are plenty of recipes that will taste almost like what I’m used to.  I like that they keep me accountable for what I am eating.  Both programs are based on calorie counting and, while they are labor intensive, they are the healthiest way to lose weight.  Because you’re counting calories you learn what a portion really looks like and both programs focus on behavior modification and that really is the key to long-term success. 

Jealousy is definitely a factor.  I’m jealous of the people who don’t have to work to stay thin.  And I’m jealous of those who have the discipline to stick with a program.  I wish there was an easy answer but I’m afraid there isn’t.  

What works for you?

What holds you back? 

How do you feel about all of it?

What can I do?

I know I’ve only been applying for jobs for about 6 weeks now.  I’m used to finding work right away though.  Having to turn down HPH is weighing on me.  I know the job market is tough right now.  I know I can’t overdo it or I’ll lose other things.  Networking is key and networking when you’re an outsider is next to impossible.  Plus I tend to stay away from a lot of social situations. 

I have found a new love in diving and sometimes I think maybe I should explore that angle of things.  Then I think about all the time I spent getting my nursing degree and I get discouraged.  I worked so hard and so long for it and now I can’t even find work!  Part of me says that life has just thrown me a curve ball and I should follow my heart but part of me feels like its criminal not to do what I went to school for. 

Just because I understand it doesn’t mean I have to like it.  I found a listing I want to apply for and I can’t even apply for it because they won’t accept applications by email and I can’t get to the website!  Why does the government have to make life so difficult?  Applying for government jobs is so complicated!  They need this document or that and if you don’t send just the right thing they won’t even look at you.   Ugh!

Don’t get me wrong I stay busy, there’s plenty to do around here.  The house would cease to run if I wasn’t here.  If I didn’t pay the bills and take care of all the household business no one would.  I was just telling this to John last night.  He thinks that cars magically register themselves and bills magically pay themselves.  And then he walks on my like I was the ground.  I feel like everything he says lately is derogatory.  I feel unappreciated and frustrated. 

I’m feeling bad about my weight too.  I have gained about 5lbs in the last month and it makes me mad.  I try to eat healthy but I have horrible cravings for greasy and sugary foods.  I try to offset it by exercising ever day but it’s not working.  I don’t like to look in the mirror because I’m fat and I know it.  I know that even if I lose weight I will have to struggle to keep it off every day.  Just another thing that will always have to deal with. 

I’m feeling isolated also.  I lost my hiking buddy and I feel like I am on my own most of the time now.  I don’t blame people for not wanting to be around me and I know everyone has their own life.  But I still feel like the friends I do have don’t really have the same interests or are too busy to hang out.  I ask people to do stuff and they always seem to be turning me down. 

Yes, I know wallowing isn’t helping anyone but can’t I have just a little pity party?  Just because life sucks sometimes I’ve been having more soreness lately too.  I attribute that to pushing the envelope a bit this weekend though.

My Daily Butt Kicking

Don’t ever let anyone tell you that Yoga is a joke or that it’s easy.  It’s not!  I started with some beginner yoga and have moved on to some more challenging stuff.  Every morning I pop in a DVD and being my daily butt kicking. 

I started with some yoga zone DVD’s, flexibility and stress release and body sculpting.  When they weren’t challenging anymore I changed over to yoga works, beginner AM/PM, Core Strength and Body Sculpting.  I have just started the Body Sculpting DVD and it kicks my butt every day.  The more challenging DVD’s raise my heart rate and challenge my strength. 

At first I loved Yoga for it’s gentle movement and stretching.  I loved that it didn’t get me moving super fast or make me out of breath.  I also loved that I watched my legs turn to rock hard muscle and my arms get stronger.  Yoga has helped me push the limits of my muscles in the comfort of my home where no one is watching.  When I was in full blown flare it was all I could do to do the beginner class.  I had to force myself every day but I felt better for it. 

Now, my pain has settled down some, knock on wood, and I have started to build even more strength and strive for better fitness and a slimmer shape.  There are still a few movements I just don’t have the flexibility or the strength to do but I try anyway.  I have range of motion loss in one shoulder and I still have to be careful not to tense my shoulder area as I work. 

The scale however, hasn’t moved significantly.  I feel better, stronger and I have less pain but I’d still like to see that scale move.  I also notice that my pants fit a little differently.  I have a more firm abdominal area.  I can’t say I’ve lost much in the way of fat but it’s been sort of moved around.  I am slowly learning that it’s less about that number on the scale or even your dress size and more about feeling good. 

As a nurse, I still worry about the research that talks about belly fat and it raising your risk of heart attach or stroke.  No one can really control that and it’s not true of everyone.  There are so many body types no one can keep track.  There is no right or wrong, it’s what’s right for you.  I am working toward accepting that.  I don’t have to like it though! 

If you’re reading this, give yoga a try.  Especially those with FM or Chronic pain.  It won’t take the pain away.  But the stronger you are the better equipt you are to deal with your pain.  Over time you will feel so much better.  You’ll become more aware of your posture and body kinetics.  By sitting straighter and moving better you will strengthen the muscles that should have been supporting you all along.  Give it a try!

Think about it…

For a long time I’ve heard people talking about meditation, mindfulness, inner peace, etc.  I always thought that it all meant you are able to suspend yourself in a semi-comatose condition and completely rest while being awake.  Sounds really hard to do right?  Something only buddhist monks can do. 

As I have been on this journey through chronic pain and illness I have learned a little bit about meditation and mindfulness.  Another way this has been brought to my attention is through the eastern and Asian influences here in Hawaii.  I’ve learned that it means something a little bit different to everyone.  Each name represents a slightly different practice. 

I’m a type A personality…thanks mom!  So shutting off is pretty difficult and fibro redoubles this effort.  Because I’m so forgetful I find myself trying to hold on to a thought so that I don’t forget.  I do this especially when I’m in the car or out and about because I don’t have a pad and paper at my disposal.  A great example of this is this blog.  I have been gathering bits and pieces of this entry all day and there are going to be more thoughts than I can remember to articulate, no doubt. 

What I’m learning is that it’s ok to think it more about controlling those thoughts.  The practice of mindfulness is pretty easy to practice.  The trick is taking the time to do it.  It’s very simply guiding your thoughts.  All you need to do is make up your mind that you are going to think about say, the waves crashing to the shore.  I did this today,  I didn’t even have to try, I just sat down on a beach without my electronic devices and watch the waves.  At first I was thinking about the people around me and watching what they were doing.  I was checking my watch and thinking about what time I needed to leave there to get my kids. 

The waves today were epic; the biggest I’ve seen.  So being mindful of the waves wasn’t hard.  The waves captured my attention.  I found a comfortable spot and sat down.  As I sat and watched the waves I found myself thinking of only the waves.  I thought “wow that was a big one” or “Look how flat the water gets between sets”.  I wasn’t thinking about dinner or picking up the kids.  And that, for me, is mindfulness.  If my thoughts wander back to the day-to-day I gently guide myself back to watching the waves and leaving the world behind. 

My massage therapist pointed this out last week.  He said “you need to take a bath and do nothing” and then he said “lock yourself in the bathroom and turn off your phone.  Once you get in the tub you have no choice but to relax”.  He’s right, we all need to shut down or unplug. 

Life these days seems to move at fever pitch all the time.  Does anyone else remember when the most pressing thing on our agenda was a playdate or riding your bike?  It’s no wonder kids are so care free, adults do a lot of work so that they can be that way!  This is a whole other post in and of itself but let me just say that in my opinion all kids should be carefree. 

To me meditation is nothing more that what I described above but I’ll close my eyes and just focus my mind on the sounds around me.   When I get distracted in my practice I simply guide my thoughts back to the sounds around me.  The longer I sit there the more relaxed I become. 

Yoga teaches you to concentrate on your breath.  Just focusing on your breath is a great relaxation practice.  All you have to do is think about breathing.  Doing this stimulates something deep in your brain that causes you to take slow deep breaths.  It’s surprising when you do this, really concentrate on nothing but your breath, how refreshed you feel in short time. 

As I left the beach today I found myself thinking more positively and just feeling happier in general.  I had my batteries recharged, found my happy place, whatever you want to call it.  We all need to recharge so I suggest you think about making it part of your life.

Making a List and checking it twice

Today is a crappy pain day but I have hope it will get better.  I saw the psychologist this morning and it was good to talk to someone.  It felt good to have my frustration with the pain specialist validated by someone.  Someone to say, “well that was a waste of time”.  I have to follow up with my PCM about him possibly calling the clinic and telling them what he wants done more specifically. 

We talked about a little of everything.  I told him I am happy that my husband and I have found Scuba diving as way to connect again.  Since John can’t hike or do the outdoor stuff anymore scuba has been a great thing for us to do together.  I told him I have been feeling a bit isolated but that I’m trying to get out and meet new people.  I have things coming up that will allow me to do that. 

We also talked about effective communication with the doctors when I do have appointments.  I usually shy away from bringing in a list because I feel that it might be off-putting to the doctor but that may be just what is needed.  I need to organize my thoughts so that I can get the most out of my appointments and get my needs met.  I feel like an idiot going in there with a list but there is little option since I can’t remember for beans these days.  So I will be working on a list of questions for my PCM next week. 

One of the things I have noticed over the last couple weeks is that I’m not sleeping well.  I get to sleep ok but then I wake up in a panic feeling like I overslept until I realize it’s the middle of the night and still dark.  I do this 1-2 times a night.  The problem with that is that I’m not getting the deep restorative sleep that my body needs to heal itself.  I am taking something in the evening to help me sleep but I don’t know if it’s effective at the dose it’s at or perhaps a new medication is needed.  I also plan to ask my PCM if a sleep study would be beneficial. 

The psychologist doesn’t prescribe medication but he has an understanding of it on a basic level as do I.  I talked to him today about the fact that all the medications that they have me taking are all messing with the chemicals in my brain.  I am concerned, in particular, about one pain medication, Tramadol. 

Tramadol is in a class all its own but it acts on opioid receptors as well as the chemicals serotonin and norepinephrine.  My concern is that I am also taking several medications routinely that mess with these.  Tramadol is supposed to be a “boost” or “bolus” medication taken when I have breakthrough pain.  The problem is that I’m needing it every day about twice a day.  That’s not really an as needed basis. 

So I have a call in to the psychiatrist to ask him if we should change some of the other medications around to get better day-to-day control of the pain so that I am not needing the PRN medication as much.  We’ll see how that turns out. 

I’m concerned that I may wind up with an overload of one of these neurotransmitters and end up getting sick from it.   It’s a delicate thing, messing with the chemicals in the brain, and I want to make sure it’s done safely.  They just need to be informed of how much I am using the medications. 

On a more positive note, the psychologist was nice enough to share with me an email about nursing positions that are available.  I’m glad that he thinks highly enough of me to do so and I think it could be just what I need.  I have been hoping that my struggles might lead to opportunity and this may be it.  I know that no matter what there is a plan for me.  I know that when the time is right things will fall into place.  But I really would like to start getting my career off the ground.  I think it would help with the pain because it would give me a distraction.  As long as I don’t have to do heavy lifting I would be ok.  So I’ll update on that when I hear back.

Angry

WARNING:  The following entry is based on my own observations and nothing is sugar-coated. 

I went to a fibromyalgia class today at Tripler.  I’m not sure what reaction they are going for, but it only served to piss me off.  They talk about grieving the things we’ve lost and about finding new things we can do.  If you ask me that’s the easy way out.  Maybe anger is inspiration in this case, but I’m angry because…

• People keep suggesting that I mourn the loss of things and I’m not ready to mourn the loss of anything!  Most people said they had to mourn the loss of their career.  I’m sorry but perhaps I need to redefine the scope of my career but I’m not giving anything up. 
• I am being sent to classes to teach me time management, pacing, nutrition, sleep, relaxation etc.  Do they really think these are new concepts?
• Sitting in a room full of people who share the same diagnosis of chronic pain and comparing notes does nothing to move me closer to getting my life back on track. 
• If I have to listen to another shrink tell me they “understand” I’m going scream.  Unless of course they can prove to me that they have walked this path. 
• So far the classes that I have attended put the abstract concepts of coping and adapting but no actual way to put this into practice in my day-to-day life.
• When I try to make appointments to talk to someone I am told that I have to wait 3 weeks.  In 3 weeks I will have forgotten what the hell I wanted to talk to someone about. 
• The idea that there is some sort of treatment plan is a joke.  They just give you freakin classes and tell you to just “deal with it”
• I can’t stand to think that I spent years in school only to have it all taken away by this. 

Yes, I’m grappling with this diagnosis and it’s implications.  I need someone to talk to I know that.  I don’t want to bring this home with me.  I want to get back to being the mom that I want to be.  I was raised to believe that when you are sick or in pain you seek help from a medical professional.  So it’s hard to hear that I need to retrain my brain to feel pain differently.  I’m feeling like no one has any real idea of how to help me get through this.  My support system is several thousand miles away and not exactly accessible.  THIS SUCKS!

I get defensive when people suggest that I reconsider my career.  It’s hard enough to get a nursing career off the ground in this economy.  I worry I’ll never get it started.  I haven’t even gotten any calls about the CNA jobs that I have applied to.  Yeah I know I have to be more glass half full.  Maybe tomorow.

Neurology

Today was my follow-up with the Neurologist.  The resident or intern came in first and I told her what the pain feels like and I told her about the headaches.  She told me to do a bunch of stuff like touch my nose and push and pull this way or that.  She listened to my lungs and said the doctor would be in.  More of the same from the doctor himself. 

The medical community has aparently changed to a hands off approach.  I have been to several doctors now and only 1 has ever even laid a hand on me to ask me where I feel the pain.  Why is that?  If they did they would be able to feel the exact tender spots and maybe they could figure out a way to target the pain.  They offered me something for the headaches but I can’t take anything that will impair my ability to drive or take care of the boys and I don’t really like that crap anyway. 

It would be so nice to have a few hours of relief.  Just a few hours where the pain is lessened to a tollerable level.  I don’t think people comprehend what its like to live life in pain.  I wonder if this were them would they tollerate it as well as I am.  Fibromyalgia is so hard to explain.  The pain moves day to day, hour to hour and even minute to minute sometimes.  No one really understands.  Not unless they have experienced it for themselves.  Some days I just want to crawl back in bed, other days I feel well enough to get through the day.  I have worked hard at Yoga to strengthen my muscles and I am seeing results.  At least my arms and legs are stronger. Now all I need is some way to work the knots out of my back.  Something I can do at home that will help those muscles to untie themselves.