Chronic pain and the fight for a better quality of life


Ok, life is crazy right now. And its partially my fault.  I could just give up. I could just stop chasing down treatments and trying to get help.  I could just accept that this is as good as its going to get.  Stay in bed.  Give up on life.

Except I don’t think I can do that.  I want more. I want more function. I want less pain.  I want more life.  So I’m going to have to work for it.

crazyI have paid all my medical insurance excesses and copays for the year. I’m over all the government thresholds, and medical treatment is now as cheap as possible, because I have already spent so much on my health this calendar year.  There are still potentially large out of pocket costs for surgeries and procedures, but I can weigh those up as they occur.

So now is the time to pursue everything that needs pursuing. If I have the energy.  And that is the question.  Energy.  Pursuing medical treatment is hard work.

It’s not for sick people.

I am averaging four medical appointments every week.  Necessary appointments.  And it’s tedious and beyond tiring.  Endless waiting rooms.  Endless lab tests.  Endless scanning machines.  Endless polite smiles and waiting…waiting…waiting.  There isn’t time for much else when you factor in travel time, wait time, and recovery time afterwards. Especially if you’ve been poked and prodded or forced to lie prone in a scanning machine for half an hour or more.  That’s pretty much my whole life right now.

Last week I saw my GP twice.  Once for pain meds and severe upper GI pain that is recurring.  The second time was for the follow up and test results.  I had an emergency CT for the aforementioned severe upper GI pain and a blood draw.  And I saw my gynecologist for the six month follow up from the endometrial ablation I had last year.  We also discussed a potential hysterectomy.  So that’s four.

The week before I had a SPECT-CT on my spine, hips and knees, saw a spinal orthopedic surgeon, saw my GP, had my hearing tested and found out I have major hearing loss, and I saw my rheumatologist.  That’s five.

This week I have already seen my GP, I have my pain management doc on Thursday when we’ll discuss the possibility of a spinal cord stimulator for pain relief and I have a neurosurgeon on Friday for a second opinion on spinal surgery and other neuro issues.  I also have an appointment with an otolaryngologist, or ENT to us normal people, to talk about my hearing loss.  That’s four.

Next week I have an ‘arm specialist’ orthopedic surgeon on Monday, to see if she can restore some of my hand function, or if the nerve damage (numbness, pain, pins and needles and lack of control) is permanent. I have my psychologist on Tuesday (thank the gods for Dr Mike the super psych. I really need to talk to him right now) and a Gynecological Urologist on Thursday.

I am finally sick and tired of the urinary retention (painful) and incontinence (embarrassing) and seeing as my neurologist is certain it’s not related to the lesions on my brain MRI, nor is there nerve compression in my spine (even though the MRI report says there is) I’ll go see a gynecological urologist, a specialty I didn’t even know existed until yesterday, and they will find out if there’s anything physically wrong with my urinary tract.  I can’t wait.  I imagine there’ll be some fun testing involved with THAT investigation.  But that’s only three appointments. Yippee!!!  A slow week!

No wonder everyone thinks I’m crazy.

But these are all real problems.  Real issues.  They’ve just been ignored for so long, I’ve finally gotten fed up and demanded some freakin action.  Right. Now.

I have a really crap quality of life.  And just because I show up in clean clothes, teeth brushed and smiling, they all think I’m just the local Munchaussen’s case.  Until the lab work or the scans prove otherwise.  And they do show otherwise. This is all for real.  So I’m a little tired of the attitude, and frankly cannot understand why I have to fight so hard and go for repeated appointments discussing the same thing before I get a referral.  I don’t do this for fun. I don’t want all this stuff. I really don’t.  I just want a better life.  A little less pain goes a very long way.

Sometimes just getting the appointment is an adventure in itself.  Yesterday when I range the ENT they told me they had nothing until early August. My GP and the audiologist both said I need an urgent appointment for there to be any chance of reversing the hearing loss.  I told this to the receptionist yesterday.  She said too bad, so sad, I’ll put you on the cancellation list, BYEEEEE!  Click.

Long story short, I called a few others, got the same response. Asked around for recommendations in Sydney.  Called back this morning and asked again. Emphasized the sudden, unilateral hearing loss and that it was urgent, and well, begged.

And suddenly an appointment time was made available on Friday.  Great! I nearly did cartwheels. But why do I have to fight so hard?  Why does it take several phone calls, several hours of effort and begging?  Why do people ignore me when I say I’m having these potentially serious symptoms?

I don’t get it.  Is it that hard for everyone?  I’m not rude. I’m overly polite, in fact.  I know these receptionists hold the key to accessing the specialist consult.  Pays to be nice, right?

Seems not.  Seems that the loud bullyboy behaviour gets the worm.

The point is, the hearing loss might be reversable at this stage. The tinnitus might be treatable.  The balance problems, the vertigo, the dizziness, the nausea, the constant headache ALL could be inner ear related.   And all could be potentially cured.  These symptoms are often more disabling than my arthritis.  The dizziness and fatigue and spinning room keep me on the couch as often as a megaflare does.

If I hadn’t been able to get this appointment I would have travelled to Sydney (three hour drive one way) to see someone more quickly.  It’s that important. I would have found a way.

I’m worn out for today, but I still need to book a bone density scan.  That’s just not urgent enough to allocate any energy to right now.  It can wait.

I also have to schedule an appointment with my neurologist. Just a follow up. Nothing has changed, so it can wait.

I need to find an Occupational Therapist as well. To apply for funding for a mobility device. A power chair.  I’ve already spent more than two hours unsuccessfully trying to track down an OT who doesn’t charge the earth.  So there are a few more hours of phone calls to go.  Tomorrow perhaps.

I only have dog obedience classes tomorrow.  Only one hour. But standing up for an hour is impossible for me right now. And it will take double that time to recover.  This is the reality.  I have been fighting this reality for so long.  But I’m only hurting myself.  A power chair means I can conserve energy for things I enjoy doing. Right now there is no time for enjoyable activities. I’m too busy recovering from doctor’s appointments and groveling on the phone organizing more appointments.  And then hoping I am well enough to drive myself there.  Never a guarantee!  Cancelling a hard won appointment is not an option.  I’ve been meaning to check out Uber and download the app.  Tomorrow? While I’m recovering from doggy training perhaps.

The weekend just gone by I tried to go shopping.  I just needed a new slow cooker. Mine died a silent and lonely death last week.  The shopping trip was such a horrible and humbling experience that I have finally accepted that I need the power chair.  It’s time I just got over it.  If I can get funding, great.  If I can’t, I will buy the appropriate device myself.  And have less pain, and more mobility, and less fatigue and more independence and less public humiliation.

And more life.  And wanting those things doesn’t make me crazy.


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