To say I’m having a rough time of late would be quite fair. The usual physical and mental troubles plus the fact of my Darling Man being in Alaska for two months. I’m almost two weeks in and my public face is still pretty good, though it has been wearing on me something fierce. I’m going to work, taking care of our Dog and two Cats and just going through the day to day motions. At some point every day when I’m alone (usually when I get home from work) I curl up in our bed and start sobbing. It passes quickly enough, but every day without fail since he left.
I’ve been flirting with escapism, wanting to delete this blog, my facebook, my myrateam.com account and I haven’t done so. Why? Because I know it’ll not really accomplish anything outside of worrying people. I realize that a lot of people care about me but when I get in a depressed state I just want to shut out everything under and including the Sun. I know that that’s when I need to reach out and I’m slowly getting better about this.
Apparently RA can cause or exacerbate depression. I read this and I’m like ‘Oh joy.’. I have to at this point stress that I am mostly alright, just having a rough go of things. My joint issues have if anything gotten more pronounced in the last year but they haven’t stopped me yet. I am especially fortunate to have discovered myrateam.com , it’s a really good resource for people with RA. It’s nice to have a place where I can vent among people in the same situation who can relate and offer insights and or encouragement.
So yeah, I’m not going anywhere, as this blog is a major stabilizing factor in my life. I’m hanging in there. I’m in the weeds, and I hurt. Sometimes terribly. I try not to be that flaky person always bitching and moaning about something be it physical or mental. But if this blog was intended for anything it’s precisely this. More than anything it’s for me to help with sorting myself out. I tend to be a person who suffers privately but I’m trying to get more open with other people about what I think and feel. Because sometimes people want to help me. What’s more, sometimes I want to let them 😉
I promise to keep doing my best. 93
I’m feeling a bit rough but not terrible considering the fact that I’m T+16 hours from my first weekly dose of methotrexate. I’m trying to stay conscious of how low my dose is, because it could be more harsh as one gets higher in the range. But yeah, I’ve been riding it out on the couch and taking it easy. I’ve had some heavy fatigue and mild queasiness but nothing like all the hype I’ve heard surrounding this treatment. Aside from an icky sweaty night I feel mostly alright.
Part of this was a strategy on my Doctor’s part. He resubmitted my Humira prescription after I added Arava and Plaquenil to my list of failed drugs. The main reason it was initially denied was the lack of having tried other things. I’m hoping the nice people at Prime Therapeutics see it his way this time. Everything I’ve read says that the most effective combination for fighting RA is a synthetic DMARD plus a biologic.
Anyhow, I’m happy to say that at least for now the big bad methotrexate isn’t such a big deal. This may change, but it’s totally workable for the time being. As long as I stay diligent with the folic acid the side effects should be relatively mild. Really, it’s nothing a bit of medicinal THC can’t handle. Hopefully now I can stay the hell off the damned steroids for a while. They take care of the swelling very well but cause trouble of their own.
I’m done with Facebook permanently, of this I am certain. However I still use one social media network, albeit a much smaller one than FB or Twitter and what have you. It’s called MyRATeam. The social network for people with Rheumatoid Arthritis. I’m not as active as some but I find it an excellent resource for information about treatment options as well as a fun place to interact with others. All I was really doing on Facebook was messing around in groups pertaining to my health issues anyway. I just decided to cut the excess bullshit away and keep what I wanted. Between here (WordPress ) and myrateam.com my itch to socialize online it pretty well covered.
So in all, I’m feeling quite optimistic about the current course of action and looking fondly to the future. In an hour or so I’ll be doing breakfast with my darling Lover and there’s no telling what the day holds in store.
That’s all for now.
I’m trying to exercise some patience and be more receptive to change. Part of my therapy is trying to break out of old patterns and identify bad habits. I’m thinking a little extra proofreading is in order for this post as this is my first time using the voice feature to blog. I’m trying to get myself what break I can in my off time. Prednisone is helping with the swelling joints but now I’ve entered night time and the steroid is starting to wear off. Gentle little prickles of pain are becoming gradually more noticeable. I thought of taking the steroid in the afternoon or something but I have to sleep at some point, right?
This voice blogging is kind of weird but not terrible. Actually I rather like it now that I’m starting to get used to it. However punctuation and things like that are a little more Awkward. I’ll go through this later and see what I missed to be sure.
I’m in the process of wrangling myself a sooner appointment with my rheumatologist. I don’t believe the Arava which I’ve taken for several months is doing me any good. My guess is the next thing to try is methotrexate but my doctor may have something else strange up his sleeve. We shall see I guess. I’ll probably start getting some relief soon as I have another Humira shot on Friday. If it’s anything like what it was before I stopped using it I’ll be in good shape.
Work goes well but I’m worried about how long I’ll be able to stand up to the physical nature of my job. I know my inflammation will only get worse as the cold gets more intense. At least that’s how it happened last year. On the other hand I wasn’t on DMARDS last year.
Anyhow, gearing up for Christmas and immediately regretting jumping back to typing this post on my android. Thinking a bath with some Epsom salt is in order. I want off the prednisone but right now I’m thinking that I should keep it up until I get seen again. Pls Pray for Thom.
In spite of pain and stuff it’s been a wonderful day. My man got me strawberry pancakes this morning and the rest of the day was quite pleasant.
I have today off from work as well as tomorrow. This fortunately coincided perfectly with today being Humira day. I haven’t noticed much in the way of ill effects, outside of one thing. After the first round I woke up the following day feeling REALLY strange. I can’t really describe it beyond that.
I just got home from about a two and a half hour bus trek to acquire this week’s Humira Pen from the Rheumatologist’s fridge. Did my shot on the left side of my belly with no trouble. It did sting a bit, but that’s only noteworthy because generally speaking I barely feel it.
I’m feeling some definite relief from my current meds (Arava and Humira ). I’ve not needed prednisone since I was in Alaska. Since I started the injections I haven’t been taking ibuprofen at all which is great for me, one less thing stressing my liver. I’ve been watching the news about obamacare with some nervous agitation. My plan appears to be safe for now but my premium is probably going up. I’m glad my plan is as good as it is. It’s so worth it not having an HMO.
As I mentioned, I haven’t noticed any real issue with the Humira, though it could take a long time to really kick in. I dunno, I’m pretty resilient when it comes to putting up with medications and side effects as a general rule. A few meds have really rubbed me the wrong way but most I used without issue. I’m not really worried, as long as I stay vigilant with blood work I’m all good.
The thing that concerns me now is avoiding getting sick or infected. The drugs I take for RA are immune suppressants so there is an increased risk for fungal and or opportunistic infections. I’ve already gotten a flu shot and am going to ask my Doctor about the pneumonia vaccine. Last year I wasn’t on anything for RA and I got a respiratory infection that lasted six weeks and made me miss my Sister’s wedding.
Anyhow, not hurting too badly and enjoying life today. I’m not trying to be paranoid about getting sick, just being realistic and taking precautions.
Chance favors the prepared mind and all.
Back at my old job on the beach. My brief foray into other employment was lousy and fairly non-lucrative. I’m just lucky I texted my old boss when I did. This kid at my work was my main competitor for bussing shifts and he serves now. I just happened to come back to my beach job just in time to swiftly grab the lion’s share of the daytime shifts. Honestly that’s the only reason I left in the first place was that I wasn’t making the money. I had a bit of a hypomanic depressive episode while I was away from the beach and I’m glad to be back up to par.
I’m not sure what is happening with Humira still save for it being in the appeal stage. I’m going to keep getting sample pens until I get cut off because why not? I’m doing my injection some time tomorrow afternoon and I will see what my Rheumatologist might know about this in a few weeks.
My pain level has been relatively low since starting the Humira. Some flaring up day to day is perfectly normal as my hands are crazy busy all day, but the pain hasn’t been lingering after work much lately. The combination of Arava and Humira is effective enough that I haven’t been taking much else for a while.
As far as morning stiffness it’s usually fairly brief but intense. I’m doing alright as far as my hands, but my feet have been giving me some hell lately. My metatarsals in both ankles have been pretty sore, especially when I climb stairs or walk uphill. People think RA is all about the hands but it has effects on the entire body including the feet.
I’m bumming a ride to my Rheumatologist’s office tomorrow from my best friend Matt. I have not seen a whole lot of him lately and am looking forward to catching up with him. Nothing says ‘Let’s Hang out ‘ like picking up a round of injectable biotechnology. Whatever. I laughed.
Aside from that, I’m calm lately. Calmer than I’ve been in ages. Things are relatively good right now. I don’t miss Facebook, that’s for sure. I no longer care about all the fuss. I have my books, my music, my sewing and some freaking peace of mind. Sweet, that.
I have the next two days to do whatever the hell my heart desires. I mean, I gotta do up my shot but that’s quick and easy. I think I’m going to surprise my Man with some sort of tasteful dinner. Yes, we eat more than tacos and burritos and quesadillas. Honest. I’m thinking maybe a really killer stir-fry. I’m doing this. Oh ja.
Until we meet again,
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.
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