Oddly enough 

Feeling better and worse. I’m not upset or anxious so that’s a plus,  but Shannon appears to have given me his cold so I’m a bit run down. It’s looking like it’s not a big deal but I’ll keep an eye on it given the fact of being on Arava. 

But yeah, I was in a rather bad state yesterday. I got sent home from work after two hours so didn’t make jack for money. I was borderline panic-stricken for a bit,  though I eventually chilled the hell out. As the day progressed it became apparent that I was developing congestion and chills so I tried to lay low most of the day there on. 

Joint pain is only a slight bother today, which is nice after my wrists swelling for a few days.  Everything I’ve been told says Arava takes a decent amount of time (month to six weeks) to build up a blood level and start working.  I’ve been on it just nine days so I don’t expect it’s doing much yet. 

Anyhow,  tomorrow is my big look for work day. I have a couple of places I’m pretty optimistic about and a decent enough plan on guess.  I’m just hoping to stay on top of this creeping fatigue I’ve had lately. I’m choking on Post-nasal drip but at least I’m in a good mood.  Small victories and all.

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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

As long as we’re being honest….

I’m doing my best to deal with the recent news. I don’t feel particularly sick right now and my strength and endurance are both pretty good.  Still, I’m aware that my body is waging war on itself and am a bit unsettled.  I have multiple swollen joints and nodules on my knuckles.  If not for those we probably wouldn’t have gotten the diagnosis for a long time.  I’m grateful for this but scared because everything I’ve read indicates that nodules are associated with a more aggressive disease mechanism. 

I’m not just going to take it lying down. I’m improving my diet, working out and staying active. I plan to ask my Rheumatologist what supplements I should be taking.  I’m not wallowing in self-pity or seething with a bunch of ‘Poor me! Why me?’ bullshit. Still, I have to admit that I’m a bit scared. This is one of those illnesses where the treatment can be as rough as the disease itself.

Again,  I don’t feel sick right now  and I’m not going to start soley based on a diagnosis. The prednisone has been giving me some relief and I’m not hurting too badly right now. I just figured this would be a better place than Facebook to get some things off my chest. 

Here’s what really frightens me: I was on SSDI for bipolar disorder for almost five years.  When my case was flagged for termination I appealed and took it up the chain of command. At the time I was severely depressed and struggling with mood issues. After over a year of appealing my medication was changed from lithium to Risperdal. The improvement was astonishing.  I began working and dropped the appeal. Then I got stuck with the bill for my benefits while on appeal (11790$ or so). I’m paying it back at the rate of fifty dollars a month.  My big fear is that Rheumatoid Arthritis will cripple me and I won’t be able to get any help. This is a thought that has been keeping me up at night with apprehension. Essentially I’m being punished for getting better.

My boyfriend is trying to get into law school.  Specifically to be a Disability Attorney.  I’m hanging on to the dream that he’ll be able to help me with this before something bad and RA related happens. The odds are not in my favor. According to Johns Hopkins website sixty percent of people with RA become disabled within ten years of being diagnosed. 

I am trying not to give in to fear and go about my life.  It’s entirely possible I’ll have great treatment results and go into extended remission.  I just don’t know and the future is intimidating the living hell out of me.

I was hospitalized frequently as a kid. I know the drill. I have to fight and keep fighting hard. This is what I keep telling myself when I want to cry, which has been quite a bit lately. I’m not going to use or drink over it and I’m not just gonna sit around and be sick. To hell with that.

I am in desperate need of some inspiration.  Pray for Thom please.

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A fun week indeed!

It’s been a stressful few weeks leading up to recently. I was sick for nearly two months and had to take an antibiotic regimen for a lung infection. It worked, but I still have a cough that has been induced by a med that I take for hypertension.  I switched to a new drug but the cough will take a few days to recede. I worked a full week plus overtime for several days of being seriously dead on my feet. By the time my scheduled flight was approaching I decided that I was too sick to fly to a state actually experiencing winter.

So yeah, I missed my little Sister’s wedding. I felt bad about it but I was like a walking plague victim for weeks. It was freaking miserable. I had a week off and got in to see the hand surgeon again for some cortisone shots and a note getting me out of doing prep. Hot line was fine but I was too injured to be working a knife. Turning in my note caused the bastards to make good on their threats to slash my schedule.

They scheduled me a night knowing damn well that I only work mornings because I ride the bus. I just got pissed arguing about it and calmly told them I was donezo. The final insult was them trying to not give me my overtime pay for the week I worked when I should have been in bed with Vicks on my chest. I cornered my boss and got him to cough up the difference and left there feeling free and liberated.

Aside from all that bull, it’s not a misleading title to this blog post. It’s been a fun week. Shannon’s Mom has been staying with us the week  and she is an absolute trip. We’ve been having lots of fun and tonight she’s taking us to a late dinner at a really swanky place in Tampa. I am excite 🙂

The three of us have split kitchen duties and watching movies and going shopping and whatnot. She got us some cool stuff for our dog and two cats as well. So that’s a plus.

Monday I resume the job search and Thursday I go to my appointment with Florida Vocational rehabilitation. I’m hoping that they can help me get on the right sort of path.

I have a really good feeling about getting involved with the Vincent House. That’s about all that’s going on at the moment. Out of an abusive job and aggressively searching for a new job. Had a second interview for a bussing/dish job on Clearwater Beach. Hoping something comes of that.

Oh! There is one more thing. Auditioned for the role of Mitch in ‘A Streetcar Named Desire’. Keeping muh fingers crossed. That’s really all.

Keep it absurd, y’all.

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-T