Inflamed: Living with Rheumatoid Arthritis

Goodbye coffee, hello green tea

Angela — Wed, 18 Jan 2012 22:40:26 +0000

Wow I haven’t posted in nearly two months – sorry for that! Things have been crazy and busy and…challenging. I’m still recovering from my ankle surgery in October and I’ve actually been suffering through a pretty bad flare-up for the last 2-3 weeks. BOTH ankles have been really painful making it difficult to walk or be on my feet much. My hands and wrists have also been bothering me during this time, so I’m fairly confident it’s the RA flaring up and not something else. But who knows. My next Remicade infusion is Jan. 27th so hopefully that will help get rid of it. I also finally managed to speak with my rheumatologist’s nurse today and she told me that my doctor wants me to go on prednisone again for the next couple weeks until I see him on Jan. 26th. Great, PREDNISONE. I’ve been trying so hard to stay off this drug; I haven’t taken it since August. Before that I was able to be off of it for an entire year before a bad flare-up forced me to go back on it again. The thought of taking it now is very depressing and makes me feel anxious and kind of sick inside. But what can I do? The pain and swelling in my ankles is driving me crazy – it can’t go on like this.

Anyway, I started a new temp job at the end of December working for a large non-profit healthcare system located at the University of Minnesota. I actually worked here four years ago in the exact same department and I’m filling in for the same woman who is out on maternity leave again. It’s good to be back, for the most part. The hours are pretty flexible, which is really important, and, well, I need the money. Progress has been made, but I’m still working hard to pay bills and get rid of the debt that seems to keep holding me back from moving on in life.

The good thing about this job is that it forces me to get up and move around and to get more exercise. The bad thing is, well, the same. I’m pretty sure that all of the extra walking I had been doing when I first started here is what has caused the flare-up in my ankles. Also since starting the job, I’ve been consuming large quantities of Diet Coke and coffee all day, which makes me suspicious that the caffeine/coffee might be the culprit as well. So! I stopped drinking coffee and delicious lattes and gave up my Diet Coke addiction cold turkey at the end of last week. Has it helped? I’m not sure, but I think so. My left ankle seems to be somewhat better however the right one is still throbbing constantly. Hopefully the prednisone and staying off caffeine for a good length of time will help calm down the RA and inflammation. Of course no doctor will ever tell me that he/she thinks caffeine or coffee would cause arthritis flare-ups, which is frustrating, because I always want immediate answers. However there seem to be no real answers to any of the questions and mysteries that surround this disease. I’m dying for a coffee right now, but my instinct is telling me to stay away from it. I’ve been trying to drink more tea, especially green tea, but it’s just not the same.

So there you go! That’s basically what I’ve been up to in the last couple months. I’m still trying to be patient while my right ankle is going crazy with inflammation. Oh, I’m also thinking of doing some physical therapy in the warm water pool at Courage Center. I know that would be a really wonderful thing to do – I just have to get over my horror at the idea of wearing a swimsuit in public. Maybe I can wear a sweatsuit in the pool? That would look attractive, I’m sure. Ok, I’m ending this now before I start rambling about how I was traumatized in middle school when we had to take swimming for gym class. Nobody wants to hear about that.

Thanks for reading!

Infusion time again

Angela — Wed, 30 Nov 2011 03:12:06 +0000

I had my Remicade infusion yesterday and it went fine, as usual. And it was boring, as usual. There was a young girl in the “infusion bay” next to me who was watching TV and had Ru Paul’s reality drag show blaring. So annoying. There was a young guy in another bay blabbing really loudly too, which was also getting on my nerves. If I have to sit hooked up to an I.V. for three hours I’d prefer it to be quiet, but eh, what can you do? I had planned to read a lot more of my book but instead wasted a lot of time playing with my new iPhone. So addictive! That’s all I have to report, really. I’m glad the infusion is done until the next one in eight weeks. Then I’ll have to start fighting with my insurance company and deal with the stress of getting financial assistance for the year. My insurance “starts over” January 1st AKA turns to crap. I know I shouldn’t complain though because at least I have insurance. I can’t imagine what it must be like for people who have RA or other chronic illnesses who can’t afford insurance. It’s criminal, really. I end up paying a ton in out-of-pocket costs, but I’d be so far in debt if I didn’t have any insurance.

Ah, what else is new? I drove again tonight for a bit. Exciting! I also have not taken any pain medications today, although I might have to pop a Percocet before bed. Tomorrow morning I have an appointment with my psychologist/therapist. I haven’t seen him for months so this should be interesting. He’s been annoying me lately so I hope it’s worth it seeing him again. The last time I met with him he was discouraging me from trying to make a career in photography and that made me mad. So we’ll see.

Ok, I’m going to go watch a movie or something.

Vioxx settlement

Angela — Sun, 27 Nov 2011 19:29:48 +0000

I just read this article on BBC.com about the drug firm Merck & Co. agreeing to pay almost $1 billion to settle criminal and civil charges regarding the drug Vioxx – which was often prescribed for people with rheumatoid arthritis. I remember when Vioxx got pulled from the shelf but I had never taken the drug myself. I did take Celebrex for a while which also has major health risk warnings related to heart attack and stroke (like Vioxx), but it never really did anything for me so I stopped it. Has anybody else had any experiences with Vioxx? Or Celebrex? I’ve been really lucky over the years that I’ve never had any bad side effects from all of the different medications I’ve taken. *Knock on wood* that continues! It’s scary to think about, but a lot of these drugs for RA are very powerful and can be quite dangerous. However it can also be dangerous to not take the medications, which is frustrating.

Check out the article – “Merck & Co. agrees $1bn Vioxx settlement in US”

Addendum

Angela — Sun, 27 Nov 2011 04:25:51 +0000

I am leaving the house tomorrow even if it kills me.

Ok, goodnight.

New haircut, new ankle?

Angela — Sun, 27 Nov 2011 01:20:17 +0000

The new 'do

Sorry I’ve taken so long to post again. I’ve been busy, ah, lying around being bored and feeling pathetic, I guess. Actually it’s been almost four weeks since the surgery and my ankle does feel better, which is wonderful. I drove for the first time today which was very exciting (it really was). I only drove a short distance though so I’m not sure how far I can go without it hurting too much. I don’t want to aggravate it and set myself back, of course. I’m dying to get out of the house though!

Anyway, on the 15th I went to the doctor for my two-week check-up and that went very well. He told me that when he scoped the joint he was really surprised at all of the inflamed/damaged synovial tissue/crap he found in there. This was surprising because none of it showed up on the several MRI and X-ray scans I had. So I felt very relieved at hearing this and having him confirm that it was indeed a good thing that I had the surgery. I also got the two sutures removed and he told me that I don’t have to wear the boot all the time depending on how I feel. He also told me that he was very aggressive in removing the damaged tissue and that’s probably why I’m having more pain this time. I just really hope that my ankle completely heals this time and that my pain and swelling will be considerably less or even go away (what a miracle that would be!). I see the doctor again in a couple weeks, I think, and then I’ll have to start physical therapy. Yay.

What else can I complain about regarding this stupid ankle? Well, when I was finally starting to lose weight again I gained it all back after the surgery. I’m pissed off about that, even though it’s understandable. Just recently I had to stop the lovely pain medications because of some bad side effects. I’m pissed about that too. No, I wasn’t becoming a narcotics addict, so I’ll let you think about some other side effects of opiates if you want to. Not pleasant. I should be tapering off that stuff anyway, I know. They really did make me feel better though. So where was I? Oh yeah, I still can’t walk normally, I’m fat and deprived of delicious Percocet, bored and crabby BUT….

I got a fantastic new haircut! I’m happy about that. Actually I’m pretty happy about a lot of things right now. But this has all been a tough lesson in having extreme patience, which is something I lack. At least my hair looks good, right?

Sorry for the cranky rambling, but I am still alive and my ankle is still attached to my foot, etc. The healing and recovery continue on….

Thanks for reading and I hope you had a great Thanksgiving!

~Angela

Day 10

Angela — Thu, 10 Nov 2011 18:56:02 +0000

My ankle hurts a lot and I’m still lying around all day resting it, going crazy from boredom. I’m actually waiting for a call back from my doctor’s office. My ankle seems to have gotten worse and more painful over the weekend and I’m wondering if that’s normal. Basically I can’t put any weight on it unless I’m taking the pain meds. When I first wake up in the morning and try to stand on it, it’s so sore and painful. Torture. I hope this is normal for it being Day 10 after surgery. I really don’t want to have to go into the clinic until my scheduled two-week appointment next Tuesday. But really, I’m just worried that something is wrong. I can’t remember it hurting this much last time, five years ago. However I probably blocked a lot of that out of my memory. I hope my doctor’s assistant calls me back soon. HYPOCHONDRIA!

In other news, it was my birthday on Monday. It was a pretty nice day despite being an invalid. My sister took me to a movie during the afternoon – The Rum Diary. Then I went out to eat with the family. It was also my dad’s birthday on Monday so we were celebrating with him as well. My good friend Kenneth in Dublin sent me a really nice birthday gift that arrived yesterday. He gave me this cool graphic-design kitchen towel thing from The Cake Cafe in Dublin. He also sent me a bunch of really awesome postcards of Berlin during the Cold War era. I love that kind of thing and I spent the day messing around taking some photos of the postcards. Oh yeah, and he also gave me these delicious mint chocolate biscuit things. Embarrassingly, I admit that I ate them all in one sitting. Well hey, what else am I supposed to do? They were really good.

Palast der Republik, Berlin, 1982

If you want to see more photos of the postcards and other random stuff I posted recently, check out my Flickr page – http://www.flickr.com/photos/meinherz

Recovery

Angela — Tue, 01 Nov 2011 18:50:13 +0000

Hi, it’s me again.

Recovery right now includes:

-Green tea
-Bag of ice
-Painkillers
-Netflix DVD: Faraway, So Close! (1993)
-Books: Down and Out in Paris and London by George Orwell; Outliers by Malcolm Gladwell
-Magazine: current issue of Newsweek
-Crochet and knitting projects
-The Internet
-PAIN
-BOREDOM
-Zzzzzzzzzz

Post-op

Angela — Tue, 01 Nov 2011 18:11:34 +0000

My surgery went well yesterday and I’m feeling pretty good recovering today. In addition to the general anesthesia I was given, the anesthesiologist also gave me a localized nerve block for my right ankle/foot, which meant it was basically paralyzed for 24 hours. So, needless to say, I didn’t feel much pain at all yesterday after the surgery. This morning I could wiggle my toes again and the feeling in my foot is starting to creep back. My ankle is starting to hurt now, too. I’m drugged up on some percocet and vistaril, which is pretty nice, I must say. However I’m already bored just lying around on the couch with my foot up. Trying to walk at all is a huge challenge – especially with cumbersome crutches I can’t really seem to get the hang of. I will also have to wear this attractive giant black boot for at least two weeks, depending on how fast my ankle heals. This means I can’t drive until I can wear a normal shoe again. Hopefully I can bribe friends to pick me up and help me escape from the house during the next few weeks.

Good news – after I came out of surgery my doctor/surgeon went to speak with my parents about the operation. He said that the scope showed that my ankle joint is not damaged, so this is really great. He also said he removed scar tissue and damaged/inflamed tissue that was from the RA. I wish I had been able to talk to him myself, like last time, but maybe he figured I was too out of it from the anesthesia. I might call the doctor’s office tomorrow or something to see if I can speak with him.

So that’s the surgery news. I’m glad it’s over. And I really hope it works this time and that removing all of that inflamed crap will cut down on my pain, swelling and immobility. I just want to have a normal ankle again.

Surgery tomorrow

Angela — Mon, 31 Oct 2011 00:09:00 +0000

My ankle surgery is tomorrow morning. I’m trying to not think about it too much, but I am really nervous. I can’t wait until it’s over. Surgery is scheduled for 9:50 and I have to check in by 7:50. The procedure should take about an hour and I will go home sometime later tomorrow. I’m sure everything will be fine, but it just freaks me out thinking about it – thinking about being put under and the doctor scraping around inside my ankle. Ick.

Prayers, good thoughts, healing vibes, etc. are very welcome!

My massage therapist stresses me out

Angela — Fri, 14 Oct 2011 01:11:33 +0000

So I went to one of the Massage Envy spas last night for their Arthritis Foundation deal. It was an…uh…interesting experience. Basically, my massage therapist was a weirdo girl who tried to chat me up during the massage while I was lying face down shirtless and already feeling a bit uncomfortable. Practically straight away she asked me in a creepy voice, “So what do you like to do for fun?” Huh? NOTHING. DO NOT TALK TO ME DURING MASSAGE, PLEASE. Throughout the rest of the hour she proceeded to tell me about how she thinks about what it would be like if her dad was a cat and that she has psychic abilities. Regarding the latter, of course I couldn’t resist asking (still lying face down while she pummeled my back and called me “Dear”) – Ok, so what do you sense about me and my “energy?” She replied, “Your right side is full of work stress and…FEAR.” Uh ok. She went on, “Your left side has some…anger. Is there trouble with your mom?” What? No. She said, “I sense an older, female energy in there.” Well I’m certainly mad at plenty of people these days but my mother is not one of them. And I’m pretty sure she’s not in my left shoulder. Maybe it’s Grandma? Er, okay, thank you, Creepy Girl, glad I asked.

I think I walked out of there more tense than when I walked in.