Spring is in the air

Yup, Florida’s ever so brief flirting with cool temperatures is nearly behind us giving way to spring. This will be my second spring break working on Clearwater Beach and I am EXCITED this year. I plan to make some money. The fact that my employer just gave me a killer raise plays into this aspiration well. 

Health wise I’m doing pretty well. My foot is all healed up and my RA meds seem to be doing the job. I’m not having intense pain when I do flare and it’s certainly less frequent with my taking the Methotrexate and Humira. I don’t use steroids much these days and I rarely use my heavy duty ibuprofen.

Anyhow, things are pretty good right now. Work goes well, I’ve managed to catch up with a couple friends recently and I’m just trying to enjoy the time I do get to myself. Playing into that, my listening agenda lately has consisted of The Devil’s Blood, Beherit, Funeral Mist. Samael, Jex Thoth, Jess and the Ancient Ones, Fallen Christ and Sadistic Intent. I’ve also been occasionally working in some moody stuff like a bit of The Golden Palominos and how could I forget that lovely band called Purson? Magnificent band, sultry, trippy and deeply insightful. Just the way I like my Psychedelica.

I don’t do nearly as much reading these days as I would like and this is something that I’m trying to improve my record on. I’m ADHD as all get out. I live to read if it interests me but I have a hard time staying on task and my attention wanders horribly. Currently I’m reading a book about Goddess worship throughout human history as well as the occasional Crowley book. Even if all I read is a chapter now and then I try to keep going.

As ever, with all things. This spring break should be a bit better. A lot of the construction on the beach is donezo. I know what’s wrong with my joints unlike last spring break. The meds seem to be working well and I’m feeling alright about it. As long as I can manage the fatigue I’ll be alright. I just finished eight days straight the day before yesterday. Can’t wait to get that check. 

In the meantime, based on a few suggestions from friends I’m going to give CBD oil a try for my arthritis pain. It got some rave reviews from people I know that had some pretty serious pain to manage. I’m pretty sure Florida will give me a medical marijuana card but God knows how long that’ll take. CBD is already legal in this state and I think it’s worth a shot.

So yes, today finds me facing the near future with optimism and hope. I just have to be careful and listen to my body. I can only do what I can do. 

That goes for you as well. 

93

-Thom

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An unexpected maintenence day

Normally I’d be riding the beach trolley to work right now.  However,  my boss called me at eight AM and told me that I  could take the day off. This is equal parts blessing and curse. I’ve been hurting pretty good lately and haven’t been able to stay off the prednisone or ibuprofen so while I love having a break I still need to support my damn self. 

I’m a bit annoyed that I won’t make any  $ today, but I do appreciate having a day off to do my Humira injection which will hopefully cover me this weekend and there on. I remembered to let the pen warm up today, so it didn’t hurt nearly as much as the last injection. I seem to remember that the relief began after shot number two. As this is the second shot since I started back up I’m hoping that it does it’s thing soon. The prednisone has been helping but isn’t a long term solution as it can mess with bone density and important stuff like that.  I’m down to 5mg a day and hoping to put it away for a while after I get through this latest episode.  I wanted to make money today but frankly I’m still pretty sore from last week. The joint swelling is becoming more pronounced and the pain is worse than usual.  The steroid is helping but I think my body is getting used to the dose I’m on. I’m also very reluctant to raise it as that’s where most of the issues start occurring. 

Not sure what to do with this day. Trying to find the balance between productive and chillaxing. I have a mess of pills to organize as well as plenty of house work to knock out. Honestly though I’ve been fighting some creeping inertia this week.  

Anyhow, time to catch up on muh life a bit.  Maybe squeeze a bit of rest in there too. No promises ๐Ÿ˜‰

Muh composureย 

Is honestly pretty strong lately.  I had a period where I was kind of getting sucked into the old blacker than death pit of despair.  It’s not as easy to do as it once was,  but I stay vigilant nonetheless because I fully realize what I’m screwing with. I am really trying to be good to myself here and not let it get away from me again.  

Mentally,  I’m in a pretty excellent place. One of optimism and hope. I’m staying positive and taking decent care of myself as far as staying up on all my meds and eating right. Haven’t eliminated gluten but have significantly cut back on it and I’m pretty sure it’s the reason my belly is tightening up. I do need to start using the elliptical again, it’s pretty much the perfect workout for me. Soon, honest.

Still having a fair amount of swollen joints so my Doctor got me started with Humira injections yesterday.  It’s pretty easy to do and doesn’t hurt much at all,  at least so far. My Doctor has said if the DMARD meds do their thing I should be able to cut out ibuprofen which can spike my blood pressure.  I didn’t really feel any different yesterday after the shot in my thigh. Woke up feeling rather strange the morning after but not particularly sick. Just really weird like.

So yeah,  things are sort of in a state of flux, but for the best methinks.  I’m grateful to be treating my RA with some proper meds and things have been lovely as ever on the home front.  I’m chilling on the couch with my bestie Ms. Roxy at the moment,  as I so frequently do. 

The only thing I find myself worried about now is getting sick. I’ve been warned that if I’m sick on Humira day I should skip it.  Honestly the potential effects for this one are pretty scary but I decided to give it a try because my Doctor said it would be cheaper than methotrexate and most likely have better results.  At least after everything processes with the patient assistance program he signed me up for. If not for this I doubt we would have considered a biologic as they are hideously expensive generally.  As far as the getting sick thing, allow me to clarify. I’m not being a hypochondriac or looking for something to go wrong, I’m just being realistic about the fact of being on two Immunosuppressives.  Aside from paranoid handwashing I’m just going to start packing sani-gel and try to avoid the bus. I see a lot of cycling in my future. Could be a good thing though, in fact I’m sure of it. 
On that note, I feel compelled to mention that my better half and my family are being really awesome and supportive about this whole business.

That’s why it kind of pisses me off when I hear people go on their rants about big pharma or their conspiracy theories about medical science.  I’m not saying that there isn’t profiteering and shit like that going on, not by any stretch. It’s just that there are a lot of good health professionals out there who bust their asses to help their patients. I’m grateful as hell to have an excellent care team. I feel it’s a pretty dick move when people try to tell folks with chronic illnesses that they know better than our physicians.  I grow  tired of people and their belief that there is some organized effort by big pharma to slaughter the population. I have three Physicians who look out for my various health issues and I’m grateful for each of them.

Proper diet, exercise,  probiotics, these are great things that I include as part of my routine.  But early aggressive treatment is how you prevent irreversible joint damage.  I have seen photos of advanced Rheumatoid Arthritis.  I do not feel like taking my chances. I have a dear friend who is trying to convince me that medical science is out to murder me and that a person at a health food store can cure my Rheumatoid Arthritis and Bipolar Disorder with the right combination of herbs and supplements.  I’m not buying it,  to be perfectly frank. I know of a person who was a good friend of my sister who’s acupuncturist convinced him to stop taking his psych drugs.  Two weeks later he blew his brains out with a shotgun. I think I’ll stay on the meds.
Aside from that,  I’m also thoroughly sickened by the election.  Both parties giving me shit for voting Libertarian and assuming that they own my vote. They can both kiss my ass. I don’t want more of the same. I will vote however I damn well please and you can all live with it.  

So yeah,  that’s about where I’m at. I hope you enjoyed my hopelessly disjointed thoughts. 

Cheers.

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