Tag Archives: flare

Pissed-Off Prescriptions (Long, Long Post!)

02 Monday Mar 2015

Posted by in Rheumatoid Arthritis

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I am stopping my medications.

 

Just kidding…

 

I am sure you noticed the increasing “security” around prescription drugs and the increasing difficulty of obtaining them (don’t I sound like an addict right now…) And, if filling and picking up the prescription is a piece of cake, paying for them is not, even if you meet your insurance deductible.

Today’s post is not about my specialty medication but my everyday run of the mill prescriptions. Enjoy!

 

prescription meds

 

Before we get into the lovely narcotics let’s work start with literally the most boring supplement ever..

 

I take a weekly Leucovorin Calcium tablet. It is a folic acid supplement that counters the effects of my chemo medication, Methotrexate. It protects my red blood cell counts and reduces my nausea. Honestly, I am not sure what happened but back in December I ran out of pills. I called for a refill and my insurance declined it. Apparently, they would not refill for five weeks! I thought I only took two extra pills when I missed my weekly injections…why wasn’t it covered? This was most certainly not a opiate. It probably had a negative potential for abuse.

I could purchase four pills at $5.00 a pop to tide me over but I refused to give in to this insurance craziness

You guys know me well now, I am a proud consumer. I like spending money, I like buying things. But, you know what I have a problem with? Paying for things I ain’t supposed to be paying for! (CVS has such a great rewards program all my purchases average 50% to 60% off, Bath and Body Works, about 70% – if I cannot manage a good discount I don’t purchase!) I stopped the medication for four weeks…and my dad really yelled at me for it. Okay, for good reason too…My hair fell out and I was all sorts of lethargic. Regardless, I stood firm…but, enough of the boring medications…

 

It’s now time for the fun stuff! Let’s start with Tramadol, the least aggresive of the two narcotics I talk about.

On my “foggier”, more flared up days I felt like my brain was deteriorating and decaying from the inside. I sometimes did not even remember conversations while I was having them! I tried to lessen the amount I worried about by placing my prescriptions on “Auto-Fill”. The pharmacy refilled medications as early as seven days and paid me a courtesy call when they were ready for pick-up.

Tramadol is now a Class IV substance. It has always been considered a “controlled” substance but with the new classification pharmacies were no longer legally able to fill the prescription before its due date. On top of that, they need a new written prescription every few months.

My pain medications are one of the more important pills I take on a daily basis. They take away my pain and allow me to function (How much more do I sound like an addict now?) What if I cannot get to the pharmacy that same day? Am I supposed to go without painkillers? It’s not the biggest deal in the world, just a little extra work. Speaking of extra work….

 

Now it’s time for the really fun stuff!

Vicodin does not make my daily medicine list. It does not even make my monthly or bi-yearly list. It is reserved for those special occasions when I f*ck up my spine so badly the pain radiates throughout my entire body (I rarely curse on the blog but this pain warrants that language). My spine is the few areas that are not as affected as other joints except during very, very bad flares.

 

We got a snowstorm last weekend. An actual snowstorm, with at least five or six inches of accumulation. I got a true snow day which unfortunately, includes shoveling. I only freed the back and driver’s side of my car so I could get out the driveway but I felt it in my lower back. I added insult to injury and gave Saachi a bath. While she was in ICU she refused to pee until she could no longer hold it and urinated in the cage. She was a stinky pup but I had to wait for her suture line to heal over the two week recovery period. It was easy to give her a bath but it was activity I was unused to.

As I was getting ready for bed I knew I was going to pay for the extra work the next day. I was already in discomfort but I could feel the acute tingle creeping in. Usually, sleep healed my pain but this time it was not enough. I was fighting a sinus infection and a flare and there was just not enough energy left over.

I called my doctor for a Vicodin prescription and asked his medical assistant to fax it into the pharmacy for me. Guess what? The FDA also re-classified Vicodin as a class II drug. This meant faxed-in scripts were no longer accepted. I had to physically pick up and submit the prescription myself.

ARE YOU FREAKING KIDDING ME?

The last thing I wanted to do while my spine was out and could not even bend down was drive to my doctor’s office, drive to my pharmacy and wait for the drug!

At the time, the idea of driving made me sad so I asked her to mail me the prescription which postponed my access to the painkillers by a couple of days…

 

Eventually, I got my pills, I filled my prescriptions, I did not even pay through my nose for them…it was just getting tougher and tougher to get hold of them.

 

Have you had trouble with any medications? What has changed over the past few months?

 

Hi, my name is Monica and I have RA.

 

 

Waterspotting and Dotticure Nail Art: The Fire Doesn’t Always Burn Gold

24 Tuesday Feb 2015

Posted by in Nail Art, Reviews, Rheumatoid Arthritis

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The last couple of days left me totally uninspired. Nothing in particular except for that time I shoveled snow and busted my spine…and that other time I had to lift my mastiff out of the car because she knew she was at the vets and dug her legs into every open crevice around the seat.

I could hear my doctor’s voice in the back of my head, and I could see his expression floating in front of my eyes but, I had to do what I had to do; even if it made me feel awful later.

Anyways…

 

Months ago Glam Polish released a limited edition Lord of the Rings collection of polishes. I did not delay in purchasing it…it sold out within days so I consider myself the lucky few who managed to grab the entire collection. I was so excited when I received the collection and meant to post swatches. Instead, I couldn’t bring myself to use them and placed them on my Lord of the Rings shelf (I did not just admit that to the entire interwebs)!

I finally used them and I can’t believe I waited so long. The holographic shimmer in these are amazing! As you all know, I do not generally post swatches but I decided to give it a try. The picture below was taken in fluorescent lighting. It really picked out the silver sparkle.

Glisten & Glow – HK Girl Fast Drying Topcoat

glam polish fires of mordorI tried to capture the polish in incandescent light as it showed the gold shimmer but I couldn’t get my camera to behave.

I can’t get over this polish and can’t wait to incorporate the other colors into nail art! The consistency was great. It was a little thick but in the good, unmoving, doesn’t pool kind of way!

 

Also, let me gush on how wonderfully this silver water-spotted. It reacted beautifully with the hairspray. It’s my favorite stamping polish and now it’s my favorite water polish too (Shhh, let’s not talk about cleanup)!

Waterspotting and Distressed Nail Art | The Rite of AgingI used 2 coats of Glam Polish Fires of Mordor as my base.

I dotted with Color Club Mrs. Robinson and Pucci-licious.

I water-spotted with Essie No Place Like Chrome.

 

Hi, my name is Monica and I have RA.

A2Z Series: I is for Inspired

08 Thursday Jan 2015

Posted by in Community, Nail Art, Rheumatoid Arthritis

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Check the sidebar for more information.

I am in the worst mood ever today. Our furnace and humidifier broke so the main and basement levels are frigidly cold and dry. This means cold joints which in turn equals angry joints. In just one day I am in massive amounts of pain and nearly immobile without great effort. It feels worse with my skin tight and dry stretched over top.

This morning my car battery died and I had to purchase a new one. On top of everything else, the light I use for blog photos is acting up so my photo quality sucks. Not to mention, my swollen fingers are more than a little noticeable in said photos.

I considered not posting these pictures or even taking part in the challenges for the next couple of days since I feel so rotten but because of the flare I cannot climb and I am just really annoyed and down and nail art always makes me feel better…

 

I was inspired today by one of The Nailasaurus’ designs. I actually put it in my December favorites post, linked (here).  It was a coincidence I used purple polishes as I really wanted to use the Chanel polish since it makes me happy. Sammy’s manicure reminded me simple is sometimes better. This is perfect for me as I tend to add and add and add until the design becomes too busy.

Even though the photo quality is pretty bad and you can’t really see the colors properly I hope you like the design for today’s A-Z prompt. The picture is a little smaller as it is a little more forgiving. Please hang in there with me for a couple of days until I can get everything sorted (including my mood!)

 

A2Z Series: I is for Inspired | The Rite of AgingI started with one coat of Chanel Taboo and three coats of Pahlish Mind Like a Diamond as my base.

I stamped with the same Chanel polish and Pueen Cosmetics plate PUEEN35  from the Love Elements collection.

 

Hi, my name is Monica and I have RA.

 

 Don’t forget to check out the other manicures below.

September Infusion

08 Wednesday Oct 2014

Posted by in Rheumatoid Arthritis

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Be ready to laugh! I sat for my last IV infusion in September! If you’ve been following my blog you know why this is hilarious. With the reimbursement nightmare spanning nine months I stopped the infusion until I got my money back. Last week’s blog post was about the extreme fatigue I experienced while off the medication so my doctor was thrilled when I re-started the infusion.

Maybe…

First, I didn’t feel any better. I expected to. But, I didn’t. The first time I sat for the infusion I felt so good the next day, I went on a four hour hike. Honestly, I expected miracles. They never came. Okay, I shouldn’t be so harsh, I did feel less tired but that was it.

The worst bit was the return of two infections. One was a sinus infection I’ve battled since who knows when. I had corrective sinus surgeries, in college, because of infections and debilitating headaches. In high school, they got so bad I took too many sick days (the longest was a week). Apprently, there was no point in getting those invasive surgeries because I still battle these infections (remember when I ended up in hospital because of them?) I was fine until I started the Orencia, which unfortunately suppresses the part of the immune response that also fights sinus infections. Just my luck!

I am also dealing with a recurrent yeast infection. I started getting them in April. At the time I actually  didn’t know they were infections and thought the symptoms were side-effects of prolonged Ambien use (the only medication change in a few months). Turns out yeast infections are side effects of prednisone use and because I have to increase every so often I am more prone to them.

 

I was really bummed because during the two months I was off the Orencia I did not have any sinus headaches! I slept with all my pets through the night without any problems and I rid myself of yeast symptoms, as well! Hooray!

Until the infusion…

Like clockwork, both infections came back full force. My headaches rivaled those I had back in high school and the yeast infection? Well, those are just annoying.

Thankfully, I had my monthly rheumatologist’s appointment the following week so I sat down with my doctor and we discussed my options. I needed to stay on biologic and, unfortunately, Orencia did the best job of suppressing my RA symptoms. He agreed the side effects were too much so we compromised and decided to make the switch back to subcutaneous injections. They are weekly, self-injections so the dose is lower. Hopefully, I will maintain my condition and the other symptoms.

I never felt as great on the sub-q injections as I did on the IV infusion but honestly, I am willing to feel a little bit more ill so I can feel a little less sick.

 

Seriously, this situation is funny given how much hassle I went through just to stop the medication. Again. How many times have I switched medication in the last three years? I’ve lost track.

However, sub-q injections have their perks. I no longer have to schedule off from work, I do not have to have to drive to my doctor’s office and sit with an IV in my arm, I do not have to sleep all day.

 

I’ll take it.

 

Hi, my names Monica and I have RA. H

Fatigue: The Untreatable Symptom

01 Wednesday Oct 2014

Posted by in Rheumatoid Arthritis

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I stopped the Orencia infusion two months ago. The good news: I was not in a lot of pain and I was on a stable prednisone dose; the bad news: I was uncharacteristically tired. Over the last three weeks, I only spent about nine hours awake per day. Nine hours. That is a fourth of a day. I wasted away the last three weeks of my life because even when I was awake I so was tired and groggy I barely got anything done. Driving to the grocery store required a nap; not to mention getting the groceries and carrying them put me over the edge.  I love naps. When I nap I naturally wake up after an hour and a half. Lately, I slept five hours straight. That is not natural.

If I was not asleep, I lay in bed barely capable of anything. I could not break this fatigue. I knew it was because of a flare but I was not in any pain so I did not feel it. My inner demons wondered if I was just lazy since I was on “vacation”. But, if you know me personally, you know I like to keep busy and I feel guilty when I am not. Breaks are not in my vocabulary. For the last three weeks I’ve beaten myself up even though the logical part of me knows it was not my fault.

 

Fatigue is a funny symptom. It is also the most debilitating one. I become so run-down and incapable of normal function. Fatigue is a result of many different thing: overwork, infection, or recovery, to name a few. But, once it hits, I have no other choice but to wait it out. I cannot prevent it nor can I treat it.

Extreme fatigue exists with every condition. Endless money, resources and time go into researching the newest medications but rarely goes into fatigue itself. If I could just control this weariness I could resolve a lot issues. I can manage the pain (with medication), I can deal with the nausea (again, with medication), and I can deal with the immobility (you guessed it, with medication) and none of these carry a candle to the exhaustion. There is no magic pill I can swallow so I have to ride out the storm.

The argument behind the research is if I control symptoms my body would not feel tired from attacking itself. If I control the disease, the fatigue will resolve itself.

 

Maybe fatigue isn’t a symptom after all, maybe it is a side effect.

Either way, I wish it did not exist.

 

Hi, my name is Monica and I have RA.

Off the Orencia

27 Wednesday Aug 2014

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Long story short, Accredo Speciality Pharmacy continually messed up and I was out quite a bit of money. Until I received my refund I stopped the Orencia…whether this was a good idea or not. Spoiler alert: a very terrible, horrible, no good, very bad idea.

 

I was in so much pain the week after the “missed” dose. Marmalade sat on my lap and tried to console me, she tweaked my hip and I burst into a fresh wave of tears. She then started crying, too. Best cat ever. I do not know if I would be able to get through these flares without her.

 

I hobbled around enough to eat and sleep but I lay in bed for days. My immobility and pain were so bad I considered going to emergency for a shot or IV or something. I never spiked a fever so I held off (I hate hospitals, can you tell?) I increased the prednisone dose to 12 mg. It did not help a whole lot the first few days but it was enough to get me to work.

A half-day camp put me in bed the rest of the day; a two or three hour shift exhausted me. I could not increase my prednisone dose because I started to get anxious and depressed, the two emotions I needed to check when working with kids!

I spent the last two weeks in bed. I barely did anything of value, I could not walk, drive, paint my nails, and sitting up was a chore.

That was last week.

…What about this week?

 

 

I feel more stable but I have off from work this week. I am still on 12 mg of prednisone but I am sleeping alright as long as I take pain medication right before bed (otherwise, I am too painful to sleep). I care for my pets, I rock-climb a little, I am no longer unbearably nauseous and able to eat more than a yogurt.

 

I hope I feel better as my body adjusts to the Orencia’s absence. I hope I can stay off it because I refuse to use Accredo.

 

I hope I get my money back.

 

Hi, my name is Monica and I have RA.

A Study in Sleep

04 Wednesday Jun 2014

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Two weeks ago, I wrote a post on my continued insomnia. This is still a huge problem but some things have changed.

I, still, for the life of me, cannot fall asleep! If I am really desperate I will pop a couple of Benadryls to make me groggy but I really wish to start sleeping on my own. Once asleep, I sleep soundly through the night. I just cannot fall asleep until 3 or 4 in the morning!

 

There were a few days I could not stay asleep because of the pain I was in. Whichever way I slept, the pressure on my joints kept me awake. I can no longer sleep on my right side because of the massive pain in my hip.

Unfortunately, this is the only side I can fall asleep on.  It is painful on my left side and on my stomach, but it more bearable.

 

I keep records of my medications and what time I take them and noticed I was taking my pain meds early in the evening.

I lowered my dinner dose and added Tramadol before bed. This really helped! Even though it does not help me fall asleep, it ensures I stay asleep.

 

Now, I just need to shut off my brain a little better so I can drift peacefully off to sleep.

 

Hi, my name is Monica and I have RA.