More Medical Misadventures of the Humble Narrator 

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 🙂

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 🙂

Cheers-

Thom 

Well Ho, Ho, Ho!

I’m in a pretty pleasant mood right now.  Not long ago I got off the phone with CVS Caremark Specialty Pharmacy.  Seems that my Prior Authorization paperwork  for Humira has been officially approved.  I’ve gotten everything set up with shipping and should have my first shipment Tuesday afternoon. So yeah,  happy dance and whatnot. 

I’m feeling a bit more relaxed about Christmas and my lack of much shopping ability this year. I’m going to do something for the ones I love, it just may be a bit basic. Anyhow,  getting the business with Humira sorted out is a major load off my mind.  I’m trying to STFU, chill and enjoy the season and one of my major stressors is now all good. 

Not much else is happening,  having a bit of inflammation still as I’m only on a starting dose of methotrexate and haven’t gotten to the therapeutic range yet. Doing much better still than I was a few weeks ago.  I’m staying off the prednisone and haven’t had any in two weeks. 

Not much else to report,  except that I may have something up my sleeve writing-wise. 

We shall see. 

Be well –

Thom 

The same old troubled waters 

As much of a handle I’ve gotten on things,  I find a lot of the same issues plaguing me. I’m worried about losing affordable insurance now that the ACA is on the chopping block. I’m not saying I’m a huge fan of obamacare,  but I got the best possible deal out of it personally.  I have a tax credit that allows me to get a silver plan with zero deductible and killer drug coverage. 

It has been the recurring struggle of my life,  staying insured as a person with less than perfect health both physically and mentally.  I have been really nervous lately about what’s going to happen to myself and the ten million or so others who bought coverage through the marketplace. Nothing right away, but Florida is really tight with Medicaid so I’m not sure what I’ll do. 

I’m really scared because joint damage can occur in the early years of RA if left unmedicated.  Aside from squirreling away DMARDS for the gaps there’s not a whole lot I can do. There are patient assistance programs available but all that stuff takes time.

There are other issues recurring but the prospect of losing my insurance is the paramount concern right now.  I need to have some kind of plan to make sure I at least have my psych drugs so I can focus on getting the other meds without losing my head. Fortunately I have at least a few months of backup of my psych drugs because I’m used to shit going bad and I stay vigilant with my crazy. 

That’s all for now. I’m nervous and in pain. C’est la vie. 

Derpity Derp

I’m almost done with a week that’s been a real mixed bag. Saw the Doctor and made some good progress with things. However,  this was possible because I got called off the first day of my work week.  The following one was a half day due to it being unbelievably dead on the beach.  So my money is not great right now.  I’m confident things will pick up,  just got to be patient.  

One more day on the beach and I hit my weekend.  Talked to my boss about having a dedicated day off for Methotrexate hangover.  I’ll take it Tuesday night and ride out the next day on the couch.  He was cool about it as I very scarcely work on Wednesdays as is. The people I work for are pretty reasonable.  I was hoping to have moved on to something other than hospitality by now but I do have a nice little existence at my beach job. 

I had been  (and still am) a bit nervous about this treatment.  It’s a chemotherapy drug used in low doses to treat RA and as such can be a bit rough.  I finally got more cozy with the idea during my most recent flare. My first real flare, to be honest.  I wasn’t sure the diagnosis was correct until this one. 

I’ve had polyarthritis (multiple swollen joints ) before but it was always relatively mild. Usually I get sore for a day or two,  let it pass or vanquish it with a tiny burst of prednisone.  In the last week or two the pain was a good bit more intense than I was used to.  I started what was supposed to be a tiny round of it and 8 days later I was being seen by the doctor  on the fly still on prednisone and getting two injections in my caboose.  He was going to just run with Humira but I asked him about methotrexate. I didn’t want to replace Arava with nothing. 

Initially he was hesitant to prescribe it as we thought I had rheumatoid nodules on my knuckles but it turns out they are something far less serious. Garrod’s Nodes, also known as knuckle pads.  At least according to the biopsy. I told him that I read that methotrexate can get you better results out of biologics and he said ‘Well this is true, is that what you feel like doing? ‘ I answered in the affirmative and he sent me on my way after my shots.

Point of all this is,  while I pretty much trusted the analysis of my physician it didn’t really feel real until now. Up to this point I thought I was a fairly easy case to handle.  It’s under control but this is all I can keep thinking to myself :

This is more serious business than I realized.  When I was diagnosed I had lots of swollen joints but pain was very mild and I’d have long periods of being relatively asymptomatic so I always quietly wondered if this was really that big a deal.  No longer. 

I’m on the couch relaxing at present.  One more day to power through and I can get my chill on. Until the first dose of methotrexate,  which is looming on the horizon. I really hope it helps.  If you can put up with it it’s the gold standard for RA. 

Soon my darling will arise from his slumber and make me a fabulous dinner. I am excite.  Also, my Electric Wizard patch arrived today! I am really looking forward to posting pics of the jacket as it takes form. Assuming my hands cooperate, that’s always the big unknown. 

So yeah,  a mixed bag. Got a lot done, but my check for this week shall suck and I’m still trying to shake off the last of this flare.. Oh well. Can’t win ’em all. 

I still feel good, and that’s enough for now.  

Au revior,

Thom 

Maintenance Day Part Deux

Things changed not ten minutes after I finalized my last blog post.  I had been in a state of frustration trying to get the Doctor’s office on the phone about a sooner appointment.  Noone would answer,  or I would get lost in the phone system ad nauseum.  Long story short,  my luck improved and the phone got answered. 

I was hoping to wrangle something in the next week or two, at the very least we can do better than February,  ja? Indeed.  I was able to get seen TODAY. This absolutely blew my mind,  given how things usually play out. An hour later and I was on the 76 headed to North Clearwater.  

I had to wait a while as it looked like the place was pretty slammed today and understaffed as well.  Wasn’t that long, though.  The doctor came in and actually proceeded to talk to me about Depeche Mode for the first couple minutes as that was the shirt I happened to be wearing.  That said,  he got to the point quickly.  We talked a bit about what the last week or so was like for me.  We agreed that the Arava wasn’t doing jack and could go. He seems pretty confident that Humira will cover most of my needs in time, but went ahead and put me on methotrexate.  The human body has a habit of developing antibodies to biologics.  I mentioned this and he said this is true and should help with this. 

Aside from that,  he had his nurse give me a pair of injections.  A steroid and an Anti-inflammatory.  Already feeling a bit better for it.  In the space of fifteen minutes I accomplished my rheumatological goals for the next few months.  I can actually relax for a while and let the meds do their work. 

Not much else is happening.  Going to work in the morning and hoping all this medical bull gives me some peace. I don’t mean to sound like a bitch. Medical science has done me alright and I have no gripes. 

I mean, I have some. I just don’t feel like they’re worth chasing. 

I’m already feeling a lot better than the last few days leading up to this.  Time to keep the momentum going 🙂

My Darling Man sleeps and I’m letting him sleep. He’s so wonderful it kills me. We’re a couple of chronically ill homos that are hopelessly in love and showing no sign of letting up. It’s so unusual being with someone who actually brings out the best parts of me. 

That’s what love is.  A couple of wounded souls helping one another.  No chains or obligations. Just you and I. Ad infinitum.  

I don’t know where I’m going with this and I don’t give a toss.  I’m content and that’s enough for now. 
Adieu. 

-T

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 😉

Le ouch

One more day of my work week remains in my way. It’s actually fortunate that it’s been kind of a slow week because I’ve been hurting pretty good lately. I gave myself a round of Humira last night but haven’t started feeling it yet. Tapering down on prednisone starting tomorrow,  I hope. It all depends on how I feel tomorrow morning.

  I like my job and want the place to make money but I’m so grateful I didn’t have to wrestle with any kegs today. I’m a reasonably strong and fit person,  which can be sort of a problem.  I tend to get so into doing stuff and adrenaline that I forget that I have an autoimmune disease and need to pace myself a bit.  Like with stocking the bar at work, I’ve started taking more trips with lighter loads. I’ve always been about maximum efficiency but I’m just trying to think about the long haul as opposed to the moment.  If you don’t give yourself a break no one else will. 

I’m at home now, having just finished the third of a four morning stretch on the beach. My feet are sore, my metacarpals are throbbing but I’m on the couch and my mood is pleasant. My Darling is making dinner and I’m enjoying muh blogging.

I’m trying to be patient with the Humira.  I’m sure my levels dropped somewhat  from missing a round ten days ago. I seem to remember starting to notice an effect within the first week and definitely after the second injection. 

The cool thing about this next week is that I’ll have my Mom’s car while she’s visiting my Sister. Looking forward to a date night with my dearest. I have a few more patches in the mail for the jacket project and I hope to get moving on it soon. At least as quickly as my hands will allow.  Sewing doesn’t generally give me much pain as long as I don’t overdo it. I’m just ecstatic that I have a project 🙂

So yeah,  I’m pretty sore but in a fairly excellent mood. That’ll do.  Small victories and all.

-T

Humiradventures Mark Two!

My Doctor is apparently a pretty determined fellow. He’s tossed me two more sample pens and has reinitiated the process of getting the med approved by Florida Blue.  I guess doctors take it kind of personally when insurance companies tell them what they can and can’t do. I’m just ecstatic that I’m going back on the stuff as it has proven itself more than worthy. My Mom picked up the pens today while I was at work and will be by with them in a few minutes. 

After a painful ten days without today is officially Humira day 🙂 Maybe now I can leave alone what’s left of my prednisone reserve for a rainy day.  I must dash now as I have to prepare to shoot myself up with some primo biotechnology.  Toodles!

Gratefully yours –

Mr. Berserker 

Moar Rheumatologically Speaking 

I’m fresh from my latest appointment with some cautious optimism.  My Doctor basically confirmed what I already knew,  that I was getting some swelling and inflammation since Humira was stopped.  He seems pretty confident that he can get it pushed through now. We shall see I guess.

He told me not to bother with the Plaquenil,  said it was the insurance company’s call, not his. He actually said ‘I didn’t prescribe it because I was sure that it wouldn’t work. ‘. Well then. He said if I’m still hurting when I see him again he’ll switch the Arava with something else but he wants to give it a bit more time to work before he writes it off. 

In the meantime,  he told me that I can do short bursts of prednisone as needed.  He just told me to avoid taking it regularly. Still useful to have in a bad flare.  

So let’s recap: Plaquenil is not needed,  Arava has a bit more time to prove itself and the well established Humira should be restored within a week if all goes well.  

I’m not trying to be a complainy-pants. I’m grateful for the fact that I’m finally being treated,  even if there is quite a bit of trial and error.  Still taking ibuprofen when I start throbbing, but trying to keep the dose low. 

Morning stiffness has been a bigger issue since the Humira got cut off as well.  I’m really hoping that it gets processed this time because I was feeling freaking awesome there for a bit and would like to re-capture it.

I’m going to sign off now, but I do so with an air of optimism and hope. 

Fare thee well-

-Thom 

Access denied 

Humira has been officially cock-blocked until I try and fail some old-school meds first. This is not really a big deal,  as I wasn’t the one insisting on Humira in the first place.  As of this morning I’m giving Plaquenil a try in addition to Arava which I’ve been on for a few months.  I really hope it helps as well as the Humira did. That’s the only real frustration here is that it WAS helping me quite a bit and now I have to start over. Meh, whatevers. 

I could have tried to get the drug company to foot the bill but I figured it wouldn’t be that big a deal to jump through a few hoops. Who knows,  maybe the old DMARDs will work just fine for me.  The annoying thing is that the older meds take a long time to really kick in and start working.  I’m having a minor flare a day before I would have been doing a Humira injection. Such is life I suppose. 

Time to compose myself,  take some meds and go to work. Have a lovely day folks!