Bah

Humira has been officially denied.  Gotta try and fail more old-school DMARDs before they(Florida Blue ) are willing to pay for it.  Which leads to the most likely next options : methotrexate(most likely ) sulfasalazine  (less likely ), plaquenil  (less likely and not used a lot due to messing with vision. 

I’m not surprised,  but whatever… those are the breaks. Methotrexate plus my other med Arava is supposed to be a kickass combination.  It’s just that it’s a chemotherapy drug and pretty much wipes you out the next day but oh freaking well heh heh heh.

I’m just going to have to have a dedicated day off each week to recover from the Trex. That is  if my Doctor uses it. I have no idea what his plan is. It just irks me that the Humira got denied because I was feeling some relief after two injections.  But still, I kind of won because I got a Scot free month of a super expensive medication. 

So, moving on ah s’pose. I had my meds adjusted recently and am feeling better for it.  Bit more of the Wellbutrin and recommendations to follow up with my Psychologist.  Alrighty then.

In my twenties my big problem was Mania and impulsive behavior and all that stereotypical bipolar stuff. I’ve been on a maintenance dose of Risperdal for a few years now and it appears to be holding.  Except for… depression.  That still burns pretty hard. It’s better since I started the Wellbutrin but still somewhat troubling. 

Tonight I’m just kicking back before my work week begins. I leave you now to resume this.
-Thom

Latest News from Planet Berserk 

I’m back in Florida after a glorious almost two weeks in lovely Alaska. Met some really cool people,  enjoyed the scenery and just freaking relaxed in the boonies. Even encountered a Moose on my last day of the trip. 

Shannon’s parents were nice enough to let me use their big-ass Diesel Chevy truck to explore Fairbanks and the surrounding area. Driving up there is an immense experience.  The roads are SO steep and twisty and there are many places where you barely touch the gas pedal and just let gravity do it’s job. 

The trip was not all play as Shannon’s eye procedures went quite well and only slowed us down a day or two. As for myself I started flaring up a couple days after we arrived. Not sure if the traveling wore me down or what but my hands were pretty sore and my elbows and wrists were rather swollen.  In a stroke of brilliance I remembered to pack my bottle of prednisone even though I was certain I wouldn’t need it. I had been prescribed the steroid when I was first diagnosed and it gave me amazing relief. Not for long term use, though.  After that the Rheumatologist said we would wait and see if the inflammation and swelling came back without the prednisone.  It sure enough did so my first day back in Florida my Doctor prescribed my first DMARD (Disease Modifying Anti Rheumatic Drug/ Immune Suppressant ) in the form of Arava. I had some stomach pain the first couple of days but it seems to have passed as long as I take it with food. So now we wait a month or two and then I get a liver panel and we see how well my body is tolerating it. I’m also taking Tylenol and Motrin along with my usual cocktail.  

So yeah,  after a few years of complaining about my joints to various doctors I’m finally getting treated for what has been diagnosed as Seronegative Rheumatoid Arthritis.  I’m not too worried about side effects outside of hair loss.  That one is a  bit intimidating.  We shall see. 

Not much has changed mentally,  I’m in a good place and mean to keep it that way.  I leave you with a cute cartoon and the sincere hope I don’t get sued for using it 

So it begins….

I’ve never really had many issues with fatigue until now. Of course,  I’ve always been a fairly heavy coffee drinker. Also, up until a month ago I was prescribed pharmaceutical stimulants for ADHD. I had to stop taking Ritalin recently due to recurring hypertension. For a long time the meds kept it in check but one day while on Ritalin I checked my pressure and was absolutely terrified by how high it was even with b/p meds. At that point I decided to just give it up and deal with the fog to the best of my ability.

I didn’t really notice much of a difference at first. My endurance was still pretty good and I kept pretty active. My job is pretty physically intense and has generally helped keep me relatively fit. I still find it difficult sometimes but can usually power through alright.  I still drink coffee but have cut down to two or three cups a day.

Lately though I’m noticing fatigue creeping in. Not dramatic but definitely there. For instance,  I get winded more easily and get lightheaded when I reach the top of a flight of stairs.  I hadn’t really thought a whole lot about it until the last week or so.

As a matter of self interest I try to get lots of sleep because it helps keep me sane. Lately though I sleep but wake up feeling more exhausted than when I went to bed. I’m usually getting seven or eight hours so I don’t think that I’m oversleeping.

A few days ago I had to be at work at eleven AM. I woke up stiff as hell and basically dead to the world.  I had my usual two cups of coffee and could still barely open my eyes.  I felt like a freaking zombie for lack of a better word.  I had an energy drink on the way to work and was still on the verge of nodding off for the first two hours I was at work.

Most of the time the first cup of coffee is all it takes.  That day was the most tired I can recall feeling in my adult life.  Even ten milligrams of prednisone didn’t perk me up any, which it almost always does. That was the first day it really sunk in that I have an autoimmune disease.  The swelling joints hurt but this is the first time it’s really slowed me down or messed up my game.

Two things are looming on the horizon in the next month :

1. The steroid is helping the swelling and the pain as well as helping me push through the fatigue but I’m going to have to stop taking it soon.

2. I’m going to start on some kind of DMARD (Disease Modifying Anti Rheumatic Drug) soon. These generally are some sort of immune suppressant type of drug. This has the possibility of making me more susceptible to illness and infection. 

I don’t know how my body is going to react to these changes and things have the potential to get really rough soon. Of course I’ll keep being a good little soldier,  but I have no idea what this is going to mean for my working life.

All I can do is hope for the best. I already have bone erosion in my hands so I’m not going to be an idiot and not treat it. I just hope it works and doesn’t ruin my quality of life.

Here’s hoping and praying.

-T

Rheumatologically Speaking

So yeah, my appointment with the Rheumatologist finally came. I’ve been eagerly awaiting getting to the bottom of the situation with my hands. I spent the first twenty minutes at the Diagnostic Clinic filling out intake paperwork,  then I went upstairs to meet my new Doctor.  He asked me about the problems I’ve been experiencing,  took a detailed history and upon examining my hands and other joints had two words to say : Rheumatoid Arthritis.

I’m not gonna lie,  I’m a bit shook up. I’m glad to have caught it relatively early on, but it’s still a bit scary. I’ve seen what advanced RA does to joints and it’s horrifying to say the least.  The first line meds to treat it are essentially immune suppressants.  It’s much more than arthritis,  it’s an autoimmune disorder that manifests itself in a plethora of ways including arthritis.  What it means is that my immune system is attacking my joints.

I brought lab results and xrays and these proved to be the clincher for the diagnosis.  He looked at my xrays with me and said ‘See these shadows near the joints? That’s decalcification.’ I don’t have a ton of bone erosion yet but ANY is frightening enough.

The Rheumatologist is pretty cool.  Nice laid back Black Man of about forty or so. He told me, ‘I can’t cure this for you, but it can be managed and long periods of remission are possible.’. He gave me paperwork for a bunch of lab tests and said ‘For the next few months you and I are going to be BFFs.’. We shook hands and he sent me on my way.

As I said, I’m a little funny feeling right now.  It’s starting to sink in.  But I’m not going to use over it or let it screw up my program.  I’ve worked too damn hard to turn tail and run.

I’m a little scared but I refuse to let it conquer me. Time to activate the Celtic Fire in the blood. I’m coming up with strategies for taking it easy on myself and am not going to bus tables more than two days a week.  Non-consecutively. I have to make money but I’m not going to kill myself to live. Hosting is relatively easy money and I’m fortunate to have added it to my restaurant skills.

Aside from that news, life is about the same. Upped my Wellbutrin due to some creeping depression and feeling far better for it. In love with my Boyfriend and life. That’ll do.

So I have a connective tissue disease, BFD.
Time to let Mr. Berserker out of the bag,  methinks.

Until we meet again,
Thom
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