I’m in so much pain.

So.

Much.

Pain.

And it feels like no one cares.

I know people do, but I hate complaining about it at the same time so I try really hard not to.

But I’ve been crying about it everyday this week.

When my shoulders start acting up – that’s what really sends me over the edge.

My whole lower body can be on fire and it’s very frustrating and annoying to me.

Add my shoulders into the mix and I instantly feel like I’m gonna lose it.

I can’t stop feeling claustrophobic in my own body.

I cried about it to my Suboxone doctor this morning (it’s Wednesday) and thank fuck he actually listens.

I told him about my super intense pain levels, my swelling, and my primary care doctor not helping me at all.

I told him that my pain doctor took me off of Gabapentin and it reduced my swelling significantly but my pain levels are through the roof again now.

He said he had never heard of Gabapentin making someone swell up like that, and told me that a different nerve blocker may very well do the same thing.

But he bumped up my Suboxone dose for now and called in a steroid burst too.

I’m so grateful for him.

I’ve been going to this same doctor about my Suboxone for over a year now. 

I’m so fucking grateful for him.

He helps me remember that I’m not fucking crazy.

(even though I hate that fucking word)

That I’m just in pain and trying to manage it the best I can.

That pain can drive people to dark places like nothing else.

I just feel so fucking distraught.

So lost.

So defeated.

Pain makes me think that there is nothing good for me in this world.

If my pain levels get any worse, I feel like I should just die already.

I wish I was being sarcastic, or cynical right now.

I’m being realistic.

There’s no point in being around if I can’t do anything.

This pain.

I’m telling you that pain can drive someone into submission so fucking quick.

I can barely walk my dog the last few weeks.

He’s getting upset with me, I can tell.

But he also knows something is wrong because I’m not acting normal.

I’m stuck to the couch.

And I know dogs can sense that stuff anyway.

My normal pain levels are only about 30% of what I’ve been feeling the last few weeks.

So it’s been super intense.

And it’s fucking nonstop.

So it’s now a few hours later, and I kinda told my general practitioner (GP) off this afternoon.

I cried, but I didn’t yell.

I was firm.

It was my GP who told me he didn’t see a problem with my inflammation levels the last few months.

I told him I feel dismissed and brushed off by him.

I showed him the photos over the last few months and told him my other two doctors were very concerned about it.

And that he wasn’t.

He glanced at the photo for literally two seconds.

Not long enough to see the comparisons.

I told him, right there, you didn’t really look.

You’re not looking at it.

It was a similar photo to my cover photo here last week, with one more photo attached.

It was photos from November, December, the last time I saw him, and then today, when my inflammation is practically gone.

He went on to mansplain a few things about the heart, and then I called him out for that.

Told him if I was a man, he wouldn’t be using all these $5 words to explain the workings of the heart to me. 

The conversation is not about my heart, I already have a heart murmur and swelling of the ankles can be a sign that you’ve got swelling on your heart too.

I’m telling you that what I was going through was abnormal for me and you were not listening to me.

My other doctors are concerned about the swelling of my ankles and you are not.

Why is that?

Why are you brushing me off?

He didn’t really have a good answer to anything other than just saying he was sorry.

It’s about my ankles and the fact that I had been swollen for months and had come to him for months to try to get this figured out.

Not putting together that it was the Gabapentin, right?

Not until my pain doctor put it together.

My GP said he’s never seen that.

Okay, fair.

And they didn’t have my RX’s up to date anyway.

They had my Celecoxib in there, but not the Gabapentin.

That was the only one that was not in my chart.

Wierd, did they not press save that day?

And I recall telling them I was on it because we discussed the Celecoxib that visit too because he also didn’t want me on that which my pain clinic PA basically laughed at.

She said it was a little silly that he wasn’t willing to prescribe an anti inflammatory medication to someone with Osteoarthritis and Unspecified Rheumatoud Arthritis.

My GP went on to over explain some other things that had nothing to do with the conversation, and I called him out for that too.

Told him that’s irrelevant.

He also told me he was disappointed in himself for not seeing my frustration and concern.

He said he didn’t get my phone calls and he did seem legit concerned about that.

So he said he could see me feeling brushing off, for sure, and he said he was sorry.

I told him that’s all he needs to say.

That.

I told him I like his office and that I feel people deserve second chances.

I told him patients like me know a lot about what they’re dealing with – more than most, and if patients like me are asking something of him or concerned about something, that he should probably listen.

I told him I’m a recovering addict so I know my dosage needs, and that I have a grip on when a flare may require a dose bigger than a steroid burst pack like Methylprednisone.

And I know to not ask for anything unless I absolutley need it.

And that I hate taking steroids but sometimes I need to.

I also told him that I never bring any of my pain levels up because it’s usually not relevant to him.

He took everything pretty well.

He diverted the conversation a lot but I think he was just uncomfortable.

He did apologize, though.

We had a decent, calm conversation, but I think I need to find a new GP.

Or I’m just going to go where my old GP went – which is in a different location of the same practice.

We’ll see.

I’m tempted to keep that office because my old GP was awesome, she just got moved.

But I think I may follow her now.

Because he is obviously not taking me seriously.

And though I lectured him in the nicest, calmest way possible, people don’t change.

So, yeah.

Great.

It’s now the next day, Thursday, and my pain levels have receded significantly and I think it’s not only from the weather not being so all over the place, but from the steroid burst as well.

My swelling is gone.

My pain levels have come down about 15% overnight, since I started the steroid burst yesterday afternoon.

I hate taking steroids, but they’re beyond fucking helpful for me most of the time.

I told my GP yesterday that just because my ankles aren’t soccer ball size doesn’t mean that it’s nothing to be concerned about.

Swelling is swelling and it’s extremely painful for me to go through it.

It amplifies my already high pain and inflammation levels.

He is still apprehensive about prescribing them.

I can tell.

So I have some work to do this next week.

I can’t believe how much the steroids have cut my pain levels overnight.

(it’s now Thursday)

I’m floored.

I feel so much more sane today.

Like I can breathe better.

That could be from the steroids too.

But this has been going on since the beginning of November, this swelling.

And it all started with a fucking flare.

I think, I think, because I gained a few pounds of weight.

Like 10-15lbs.

I’m not sure if that was the original flare culprit or not.- but I’ve got my eyes on it.

But, my pain doctor and I were trying to cut my pain from the flare by adding the Gabapentin.

And now today is day 11 of no Gabapentin.

I’m finally now feeling the best I’ve felt in months.

Not only is my inflammation back down to not being inflamed really at all, but my pain was reduced by easily 40% last night. Which was the first night of being on the steroid burst, without Gabapentin in my system.

It’s now day 2 of steroid burst.

I’m floored.

Pain is back to semi tolerable.

I feel bruised all over still though.

And my knees feel raw, so does my back.

They feel hot and sandpapery.

I can feel tiny gravel like bits between my joints.

But that’s mostly normal.

And today it’s not throbbing like it was for so long.

To be in that much pain for that long is maddening.

Quite literally, maddening.

I’m noticing today my mind is clearer.

I’m not feeling as foggy, as distant.

I know I dissociate.

And I felt like a ping pong ball the last few weeks.

Day after day of intense, nonstop pain levels.

I was checking out for sure.

And I didn’t even notice till now.

After the fact.

Which is the case a lot of the time.

With my muscles aching, I could feel my heartbeat through them all.

Aches similar to the flu, all over, amplified ten times.

If not hundreds of times in the mornings, when I first wake up.

If you can recall how crappy you felt the last time you had the flu, how achy and miserable you were?

That’s kinda what it feels like.

And then the nerves burning and electric, sharp, beaten feeling aches in all major joints.

And then some muscle cramps and spazzing in my mid to lower back.

And then my shoulder nerves, getting pinched from the frayed tendons made by the bone spurs that stick out like a spit.

And then the swelling.

But, before disability, I was expected to carry on as normal because my bloodwork is “within good ranges”.

Chronic pain is real and miserable.

And luckily I’m in a point in my life I don’t have to worry about work right now, but I worry about my own sanity and ability to commit to a job in the future.

It’s just scary is all.

That was a lot to deal with and I’m so, so, so, so glad that my pain levels are down so much today.

No thanks to my GP.

I’ve gotta work on that next.

– Keren