Of distance and longing

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 πŸ˜‰

I promise to keep doing my best. 93

-Thom

Muh Summer

It’s right around the corner. The humidity is spiking in grand Florida fashion as I prepare myself to go see Iron Maiden in June. That along with turning thirty-five are the main points of interest so far. 

On the home front I’m bracing myself for two lonely months without my Lover Man. He got a lead in a Play in Alaska. I would have liked to join him but  I simply couldn’t scrape together the funds. Also, I feel like it’ll be best for our animals having one of us here.

Rheumatologically the battle continues unabated. In spite of a year of various meds my Vectra DA score (Disease Activity) more than doubled since last year when  I was first diagnosed with RA. I’m trying to remind myself that this number doesn’t reflect the increase in my methotrexate which I’m sure is helping. 

Sometimes I’ll have a few days straight of my joints being relatively calm and painless. It’s easy to underestimate how capricious and erratic my body can be. I’ll start feeling strong and cocky but the swelling always returns and slaps me back into my place. Still, overall I think I’m showing some recent improvement and am optimistic that incorporating a gluten and sugar free diet will give me even more edge. My first diet attempt crashed and burned but  I plan to give it another go while my Man is in AK.

So yeah, the summer is pretty wide open. I am sure as shit not just being a house ape the whole damn time. I’m gonna miss the living fuck out of Him 😦

That’s about all for now. I find this is a useful protip to give oneself from time to time πŸ˜‰

Be well-

Thom

Precarious Existence

There’s something to be said for humans and their ability to withstand a constant barrage of soul crushing bullshit. Some folks are like well trained dogs, or perhaps horses. So stubbornly proud of how much they can endure the feeling of the cruel bit in their quivering mouths. I try to not be such a person when possible. 

Granted, I’ve calmed down quite a bit since I was a rage junkie teenager /young adult. But I still have a really hard time with impulse and mood control. Sometimes my brain feels like a car with the gas pedal and the brake being slammed at the same time. The laws of physical science dictate that one or both will eventually give out. That said, I’m a lot better than I used to be. I have SOME degree of control over my emotions and moods. There was a long time where I had zero.and it was not pretty. 

I realize that I have a responsibility to keep my head together and stay out of hospitals or legal trouble. I’m getting better about articulating the things that are ripping through my mind day to day. I don’t go manic. Risperdal prevents that pretty well. But in the last year or two depression and anxiety have been much bigger problems for me than they have been in the past.

I take Wellbutrin for this purpose and it helps. I’ve come to accept the fact that I’m going to have to deal with some breakthrough craziness in the name of not being completely dead inside from being zonked the fuck out on psych drugs. 

I get upset a lot, almost completely at random. I’ve gotten better at identifying my bad states and taking my vistaril (antihistamine used to treat anxiety and panic) when I start freaking out. Still, it’s been rough the last month or so. Being temporarily unemployed didn’t help my mental state any.  On a positive note, its been great to be back at my job. I missed my people πŸ™‚

I don’t know, sometimes it feels like all it takes is a single word or a random breeze to put me in a state of profound sadness. I don’t know if anyone realizes the herculean effort it takes for me to maintain the veneer of relative composure. Some days I just go to pieces regardless. It all depends on a plethora of factors and variables.

I don’t get to see my friends much lately and it’s really been eating at me. Spending entirely too much time in my own head. I don’t have a car and our schedules never line up anymore. I just worry that they think I don’t care. It’s not that at all. I just feel like I’m spread out too thin trying to do too much. 

Still, I’m grateful for the life I have, batshit as I may be. I have a job. I have relative freedom and a Lover who makes all the bullshit worth it. Its so easy to lose sight of the things that really matter. Mental illness has a way of giving one a bit of the old tunnel vision.

This has been one of my less focused posts on this blog. But whatever. I’m thinking this is a decent enough place to wrap it up with a quick run down.

I’m happy to be working again.

I love my Fiancee and my Dog and two Cats.

I’m doing my best.

May it be enough….

-Thom

More Medical Misadventures of the Humble NarratorΒ 

Well, I done did it again.  This chapter of my chronicles of pain will be recalled as being a particularly bothersome and excruciating time for me. 

‘Yes, Mr. Writer Person,  but what are you getting at?’ I hear you saying.  Allow me to elaborate on the happenings of late. 

It all started off(last monday) like any other week. Took me meds, drank some coffee and went to work.  Something was a bit off from the get go about this day. I usually take my methotrexate on a day I work with no problems.  However,  this time the ‘Trex absolutely wiped me out. I ended up having the other busser take over so I could go home and collapse.  Which I did. It was right at this point I noticed some pain in my big toe.  Didn’t seem like a big deal but it was huge by the next day,  red too. I decided to not wait any longer because I was already having trouble walking. In retrospect taking my methotrexate that day absolutely screwed me. I would never take DMARDS if I knew I had an infection.  I think it really gave the bacteria a foothold. Meh.

So yeah,  I  hobbled to an urgent care Center about a half mile from my house. Got it looked at by a doctor and was put on an antibiotic called Bactrim and sent on my way. At that point I was fairly certain that the situation had been handled.  I could not have been more wrong. I’ll illustrate the why part in due time. 

I started the Bactrim and things seemed to be improving as my pain was steadily going down. I was still having problems with walking but I figured that would work itself out. By the time I was nearly done with my course of antibiotics I was sure that the situation was not rectified. I was getting some evil pain and the swelling was still raging. I used a conveniently situated appointment with my Internist to show him my foot. His jaw pretty much dropped and he was like ‘Go to the Hospital, Thom. Now.’

I called my Mom as I had taken the bus to my doctor and the hospital he wanted me to go to is way the hell in Tampa. She didn’t know about any of this and I feel so terrible about it but I didn’t want her to worry. My Mom worries about Me quite enough. She drove me to the ER and the madcap adventure began.

The time in the ER was pretty unremarkable aside from a one hilarious exception.  The Physicians Assistant drained an abcess and put me on a ton of IV antibiotics.  They were also watching my heart rate which was sky high. I wasn’t surprised when they told me I was being admitted due to the issues that I mentioned.  The exception? 

A Doctor came in my exam room. Said ‘I understand that your blood work says you have some pancreitis, does this hurt?’ As he probed my abdomen.  ‘UMMM, No.’ Was my immediate reaction. He excused himself with a puzzled look on his face.  He had my first name confused with the last name of someone else in the ER. He came back red as a tomato and apologized profusely.  Aside from being a bit unnerving it was funny as all hell πŸ™‚

So I got admitted.Nothing too exciting.  Some friends visited and brought me a lovely THC edible so I managed to sleep that night tethered to an IV pump.  Woke up and had a pretty boring day waiting for a doctor to assess my foot further and finish what was started in the ER. Finally got a Foot Surgeon in and she did not disappoint. The procedure wasn’t too bad but the numbing part literally made me scream and thrash.  Anyhow, the Nice Lady left about thirty minutes ago and I’m just chillin on muh blog currently.  The annoying thing is that I have to do without my RA meds until further notice.  Except prednisone and pain meds, those I can still have.

I’m out of work for I don’t know how long. I’m away from my Husband to be and my Animals.  But damnit, I’m keeping my freaking foot. As usual,  I owe it all to my amazing Mom. I say this because I know she’ll read it,  and were this not the case I would still give due credit.  She’s the absolute Best. 

That seems like as good a note to close on as any πŸ™‚

Cheers-

Thom 

3000 miles from home!Β 

I’m blogging today from lovely Fairbanks Alaska.  In a few short days I’ve completely fallen in love with this place. Haven’t gotten to do a whole lot yet but been really enjoying just chilling and being away from the urban sprawl.  There’s an undeniable calm that permeates the landscape here and the energy is absolutely amazing.  

Of course,  it’s not all vacation fun. Shannon’s here to get some laser eye surgery procedures.  I’m actually sitting in the waiting room of the outpatient center as I type this.  Enjoying meeting Shannon’s friends, got to check out the Shakespeare Camp in the boonies which was awesome.  Looks like Shannon and I may be getting involved with next summer’s production as well. I’m thinking that I’ve had enough of a break from theatre now but I’ve been absolutely burning to get involved at some other theatres and branch out. I love my Franwilly people but just feel like I need to get out and see more. This would be an excellent opportunity to do so. I’m still kind of burnt out from my last show and a little chewed up and screwy feeling but I have to keep going. I don’t want my break to be too much longer lest it becomes terminal sort of thing. 

I’m an actor and a stagehand  and damnit I miss it. Plus I really want to do another show with my Boyfriend. It’s been a year and I’m finally getting the itch to go back. 

That is about all I have right now.  Relaxing and doing the vacation thing for the first time since I was sixteen years old. Everything is breathtakingly beautiful up here and I am rejoicing in the experience of the Last Frontier.  More to come. 

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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