Month: April 2013

I have hit a  Bump in the road.  This week the pain and the fatigue caught me up and hunted me down.  Like a frightened animal, I tried to hide. It did no good.  The pain and the bone crushing fatigue that is often its dance partner,  came to find me.

I realized that no matter how much control I try to exert over my illness(es), I will never, ever win.  It seems I have to learn this lesson over and over and each time I am deeply disappointed; each time I am frightened that the good or better days won’t come back again.

I suppose it is a little like going on a ride on a small plane.  Everything is smooth and the terror of being so close to falling out of the sky is mediated for a while.  You can almost touch the clouds; there is a sense of exhilaration and “I think I can do this.”

And then, just as you settle back, Bump!  You hit an air pocket.  Your pilot, or physician, is unperturbed, “no problem” she will say.  But really, it is a problem.  Because suddenly the ground is much too close.

This how I felt this week.  I felt myself slipping closer and closer to crashing into the ground.  Finally, I succumbed and went to the ER to try and get some pain relief.  My pain was in the same place it has been for over a year; the upper right quadrant of my abdomen.  I have been trying to do acupuncture, diet, exercise and whatever else I can think of to help that pain but sometimes it just eats me alive.

I saw my rheumatologist  and she suggested I not give up on all gastroenterologists.  In fact, she wants me to return to the pancreas guy in San Antonio.  So, I called for an appointment.  I dare not build up hope for a cure.  Besides, they can’t see me for five weeks.  It is just the same old thing as it has been.

My Mayo records have not arrived yet.  It is as though I never went there for two weeks.

Truly, I got screwed over at Mayo this time.  I am angry and sad about that whole thing.  My rheumatologist is going to ask around for other pancreatic specialists in the area and help me with this so for that I am most grateful.  In the meantime, I am signed up to see a nutritional counselor that specializes in food allergies.  Also, I am trying to decide whether to come off of or stay on prednisone.  If I am off, I swell up because my body is no longer working properly without them.  If I take them, I have a constant case of thrush.

But, this is all background noise.  I just want to get from one day to the next and take care of my family.  I can do that as long as I don’t get wiped out by the pain and fatigue.  Those two partners in crime are the ones that literally take me down.

So, what to do.

Fight the good Fight.

Keep posting from the Immune System Wars.

I need to keep writing.  I have been slacking of late.  I have been editing my essays but have not written anything new.  I don’t even know if this blog is helpful at all.  I don’t think I am making the best use of it.

But it is a weapon and I must use all the weapons I have.

So, “onward through the fog” and all that.

“Chin up and all that” too.

 

 

NOTE: I suck at blogging.  I have not been going in any sort of chronological order.  I have also not been explaining things very well.  Yesterday I wrote about an ‘a ha’ moment I had when my ob/gyn spoke about chronic pain as a fire alarm going off where there is no fire.  I liked the metaphor.  What I didn’t say was that I have both chronic pain and the other kind: actual inflammation.  They are very, very hard to tease apart. In fact, I really cannot tell the difference.  So, let me explain:

As I understand it,I have fibromyalgia syndrome and a connective tissue overlap disease in addition  to my primary immune disorder.  All of this means my neurons are morons and do not fire correctly. There is also something going on with my cytokines.  I don’t really understand that yet, but I am learning.

When the connective tissue disease or MCTD (Mixed Connective Tissue Disease) was diagnosed at Mayo in 2011,  I was put on a medicine called Plaquenil. This med helps dampen the immune system so it quits attacking itself and making my tissues swell on the inside. Once that took effect, a lot of my pain subsided.

In addition, when I do my igg infusions, my pain decreases.  So, I know my pain is partially due to disease.

However, a lot of joint pain and just everyday pain remained and I was told it would be with me for life.

Thus begin a journey down the chronic pain rabbit hole. I was told to find a ‘pain doctor.’   Well, I wish I had been given some sort of guidelines.  I have written a couple of essays about these experiences but let me summarize:

First guy: sent me home with multiple narcotics and suggested I take them all at once and go on about my day.  I nearly died in a car accident.

Second guy: Seemed brilliant and gave me stuff that worked but I never saw him after first two visits.  I was shunted to his P.A. or even a Medical Assistant.  The wait times in his office were one to two hours past an appointment.  They kept increasing the medications then yelling at me for being an addict.  It was very confusing and created a sense of shame and loathing that  felt  awful.  I didn’t know what to do.

I went to Mayo again in spring of ’12 and the doctors there told me a good pain clinic works at pain relief from several angles and never just hands out pills.  So, I fired the guy I had been seeing and found someone who has a more balanced approach.

At this point, I am off of over half of the narcotics and am once again turning to acupuncture as well as trying to help myself through diet and very moderate exercise in the pool.

However, the nature of the beast is that if I push too hard, it comes back and bites me in the butt.  Sunday I felt good and the water felt wonderful.  I got excited.  It felt like my old body was back.  I jogged in the water for twenty five minutes or so.

That was a big mistake.  It caused my body to react against itself and swell on the inside.

No one seems to understand how this works exactly but somehow we trigger a response that brings on the pain and the fatigue when we ‘over do.’ The disgusting thing is, you never know when you have over done it!

I find this hard to live with.

So, in a nutshell, that is me and chronic pain.  We are not friends.

Wow. That entry from Saturday is awful!  What a whinger I am.  So, I know you are all sitting there on the edge of your seats waiting to hear the latest.  Guess what?  I learned something valuable today.  I love it when that happens.

The first half of the week has been fairly bleak.  I have been in really ouchy pain and it felt like cramps. I have also been very, very tired.  I convinced myself it was endometriosis.  I hate hypochondriacs;I sure as hell don’t want to be one.  I don’t think I am.  After all, I have several, really nasty diseases that have to be treated on a daily or weekly basis.  (For instance, I am infusing right now.)

However, that doesn’t mean I don’t want to find a reason for my chronic pain. This gets especially tricky when it moves around. The pain has been in my pelvic region this week.  It hurt from my hips back to my lower back, especially on the right side. I have felt nauseated too.

So, today I had my ultrasound scheduled at the ob/gyn’s office.  When I got there, I told them I was in pain and wanted to see the doctor if possible.  I went ahead with the ultrasound (NOT FUN) and waited another hour to see my doctor.

This doctor is one of my all time favorites.  She got me through a tough pregnancy with my son and has always been there for me.  I love her.  So, when she came in I was groaning away and spread out on the table like a lump of fat tissue.  She said, “I don’t think your problem is gynecological. We have checked out your blood work from last week and other labs, plus the ultrasound, and I just don’t see much of anything. You are NOT in menopause and I am going to put you on progesterone ten days a month to regulate your cycle for a while.”

I sort of bitched and moaned and asked some questions.  She said, “you have chronic pain issues, right?”

“Yes,” I said. “I have chronic inflammation issues.”

“Right. That means your neurons are all screwed up.  They signal a fire alarm where there is no fire.  If I go in there and dig around for something I don’t think is there, like endometriosis, I could make it all worse.”

“Oh.” I said.  Fire alarm.  Neurons.  This was starting to make sense.  Then she said,

“Did you do anything in the last few days that could have exacerbated that area?” Then it hit me like a ton of bricks.

“Oh my God! I am an idiot!  I swam on Sunday and I went twice as long and twice as hard as I have been.  I thought I was doing well.”

“You’re not an idiot, but you did set possibly set something off.”  So, now I know.

Fire! Fire! Fire! I have a strained muscle and where some people might hurt a bit, my body tells me my hip is broken.  Why?  I don’t know.  Can it ever be fixed?  I’m working on it. I went back to acupuncture this week and I( heh, heh, )started swimming more.  (Oh well.)

I think I have a long way to go.  I also remember that my right hip has been gamey since my mid twenties when I fell skiing in Switzerland.  And, that is not nearly as romantic as it sounds, really.

So, I have to remember: the fire alarm is broken.  It is good to look for fire or sniff for smoke, but I need to remember that most of the time, there is no fire: just a hare trigger.

So, lesson learned and respected today.

Let’s see if I can remember it tomorrow:)

 

 

 

 

How is it that a perfectly decent week, one where I begin to think I am sort of in control,  go all to   hell so quickly?

I had been thinking that through diet and exercise and generally great virtue, I could conquer the beast that is my chronic upper right quadrant pain.  Then, I got the MEGA MENSES. Sorry to be graphic here, but I have not had a period in about 10 months.  At 47, I thought that I had gotten lucky and was going through menopause.  I had seen my ob/gyn last year and had all my equipment checked out.  It all looked fine then. So, I didn’t really think that could be the issue.

Well, low and behold, I found out this week, my female anatomy is: a. not in menopause–just screwed up. and b. I may have endometriosis or something worse so I have to get it all checked out again.

To be honest, if it were something fixable, that would be awesome.  But, I know better than to get my hopes up.

But here it is, Saturday morning, and my pain is back in full force. During the night it was bad enough to keep me awake.  So, I sinned against G..d and the Universe as a whole and took an extra pain pill.  (This is fool hardy in several ways.)  Guess what?  It ain’t workin!

So, today the conversation with myself goes: “how much of this can I take?”

“ER will not fix me.  It will just cost me $100 and a lot of heart ache to get pain relief.”

I need to hunker down and try and gut it out and all that jazz.  I hate the fact that my mind even turns to the possibility of getting pain relief at the ER.  I should know better by now.  I have been there enough these last few years.  As long as I don’t barf or anything, I should’t go.  Pain is relative. At least that is what I tell myself.  It is an unwelcome relative who wants to live with me.

No one in my family understands this.  My husband knows I am hurting so I can feel him pulling away from me. He has not a bone of empathy in his entire body.  So, on top of everything else. I have to consider his feelings and his dysfunction as part of the mix.  The kids get very stressed if I show how much pain I am in. So, it is up to me to grin and bear it as much as I can.

I guess all of the above is why I think of this whole thing as a war.  It comes complete with weapons and battles and enemies and hostages and innocent bystanders or civilians.  No one chose to be in this war: we were all drafted by my faulty immune system.

There is no way to desert and go AWOL either.  At least not for me.

I guess that is what my husband does: he goes AWOL when he knows he can’t fix me.

Hmmm. Well, I am off to the day.  I will grin and bear it and trudge through.  There is no other way to conquer the territory ahead of me.  I have run for it.  Duck and cover isn’t going to work today.

Well, I have been back in my own reality for almost a week now.  I must say it has been good to hit re-entry and realize that I am needed here.  My family was pretty shell-shocked when I got back.  Both kids were a mess and my husband was doing the automaton shuffle.  I cannot leave them like that; and have no results.

NO USE CRYING OVER SPILLED MILK.

(But Damn! I can cry over a broken dishwasher and a van without air conditioning because I spent it all at the effing Mayo!  WAAAAAHHHHH….)

So, I am the proud owner of a new thrush infection.  That seems to be the price I pay for any sort of steroid relief.  It sucks but I have to have a bit of steroid if I am ever going to get off of the pain pills, I think,

I have also found that diet, rest and staying relatively calm seem to help my side ache.  Today is the first day it has been bad since I returned and I am hoping yet to bring it to heel.  I am pretty sure it is bad because yesterday was Easter and I ate some dairy and some candy.  I also ate a little bit of ham, which was so salty I could almost not handle it.  It was bad/good.

I am trying to be extra clean in my diet with: no gluten exposure, very little dairy, no processed foods, and lower amounts of sugar, only a little meat and no coffee or sodas.

It seems to help. Basically, I can’t eat much.  My body cannot handle it.

I have been doing some reading about alternative pain control methods that I plan to discuss with my pain specialist tomorrow.  One of them is low dose naltrexone.  It is supposed to be an anti  opioid that can help the body deal with pain caused by autoimmune inflammation.  I have scanned several articles about it and spoken online to a lady whose doctor is prescribing the treatment.  I am hoping it is a way to get off of the pain meds I am taking now.  I believe they are squarely to blame for a lot of my gastric symptoms.

Basically, I was in pain so I was prescribed pain pills, which led to more pain, which have now led to damage.  It is a really bitter circle and it never ends but I mean to end it somehow.  I don’t think I have much of a choice.

I am interested in going back to acupuncture as well.  I have been in the past and have a wonderful  Chinese doctor who I trust implicitly.  My pain specialist is also trained in acupuncture so I will question him about this tomorrow as well.

The other thing I plan on is getting back to the pool.  I have to exercise.  Walking is fine but I need a bit more and the pool is the one place I like to go.  I have a gym membership and I plan to use it.  I guess I will pack my bag in the morning and go there straight from the doctor!

Well, we shall see where all these plans take me!

I will let you know)