Archive for November, 2012
My Thanksgiving and the last week has been awesome, and I’m so grateful for it.
My marathon training had been off to a slow start as I was dealing with some symptoms, fatigue being one of them. It was really hard to motivate.
My last two long runs – 10 and 11 miles – have been great. I did the second long run on Thanksgiving with my parents’ dog. She’s a great motivator & keeps me going fast.
So now I’m feeling like a marathon may actually be a possibility for me. I’ll be getting X-rays in February, so I’ll be able to see if I’m doing damage, but so far I feel great. I love the feeling of getting out and running. I’m so grateful to live in a place with such awe-inspiring running trails.
Then I spent the rest of Thanksgiving cooking – 2 gluten-free, dairy-free pumpkin pies, 1 gf, df pumpkin bread, and a grilled zucchini/squash salad tossed with garbanzo beans and olive oil. Yum! My family was very supportive of my restricted diet (with a little teasing, of course!). I am consumed with gratitude for my supportive family and friends.
Also, perhaps one of the biggest things I’m thankful for: my symptoms have been really minimal. AND, I’ve gotten the hang of the syringe, so self-injection is finally pretty painless. The verdict: I definitely like the syringes better than the pens. Way less pain, bruising, swelling and uncertainty.
I hope you all are off to a great, pain-free start to the holiday season.
Alright, I’m not proud, but I can’t lie to you guys: It was really freaking hard to give myself my first syringe injection of Enbrel.
I’ve been using the pen injectors since March – 8 months! – but had been having problems with post-injection welts and bruising and button delays/glitches (I would press the top part of the pen and nothing would happen). You can read more about that here, here, and here.
My marvelous nurse (who clearly thinks I’m tougher than I am) thought that I may be ready to try syringes. According to her, patients say the syringes are less painful. Also, since you’re in complete control, you can’t have glitchy buttons or not know if it worked.
So, she gave me four syringes and told me to try it out.
I got home on injection night from a really great dinner date and set up. I was feeling pretty confident. I’d even had some wine at dinner, which I thought should make things a little easier.
I let the medicine get to room temperature, washed my hands, sat down, put rubbing alcohol on my thigh, iced my thigh, pinched the skin, went for the “dart-like motion” to inject myself…and froze. So I tried placing the needle on my thigh, thinking I’d just push it in…froze again. And then cried because I was frustrated. Why couldn’t I just do it?
I texted a friend the pic you see to your left and said I needed a pep talk, to which he replied, “Yikes. You’re a courageous woman. Find the life energy in your fear.”
I don’t know about life energy, but the validation that it was a huge, scary needle made me feel a little better.
I tried again. Still couldn’t make myself do it. At this point, it’d been about an hour and it was a little past midnight. Frustrated and wishing my cat had opposable thumbs and could do it for me, I called my little sister.
She’s as wussy about needles as I am, but she does have an epi-pen (that she’s never used), so I thought maybe she could do it for me. She said yes, I could come over to her (college) apartment and she would try her best to stab me in the thigh. I said I’d give it one more go and call her back.
The thought of driving over to my little sister’s and making her do it gave me renewed inspiration to man-up and do it myself. I would never want to give her an epi-pen! I knew that it would be hard for her to do it, even though it’s not her thigh.
So I looked on YouTube and found this video. Seeing that this big guy was freaked about self injection too made me feel better. Also, his reaction – actually, not so bad! – gave me confidence.
I didn’t do the “dart-like motion,” I just gently put more and more pressure on the needle until it punctured my skin and the full thing disappeared into my thigh. Success! I took a breath and pushed the liquid into me slowly. It didn’t hurt, it didn’t sting, it didn’t even bleed when I pulled it out.
It’s less painful then the pen at least. I think it will go a lot better this week, since I know what to expect.
And for those of you about to self-inject for the first time, I am here to report that it may be psychologically difficult to give yourself an injection, but it really truly is ACTUALLY, NOT SO BAD.
I went for my second acupuncture appointment a couple of nights ago.
I would love to say that it was an enjoyable, healing, relaxing experience. But, in truth, my heart was racing and blood pressure was high before the needles even came out. I’m not sure why – it wasn’t so bad last time.
So my heart was racing, and I was sweating, and my acupuncturist and an observing student (who I had recently met at a party and who now knows way too much about me – awkward!) were sticking me with needles, and I was talking myself down from a panic attack.
Weirdly, the needles hurt more this time than the first time. I felt each one going in, and some of them felt uncomfortable as they were in my skin.
After the acupuncture, they gave me earnest tips on how to improve my circulation – ginger foot soaks, chi generating hand exercises…
They were well-meaning and those things might actually work, but in that moment I was so overwhelmed. How many things can I try? What other ridiculous suggestions is the world going to throw at me?
So leaving the acupuncturist, I just felt depleted. Every part of me felt heavy and I felt overwhelmed with emotion.No matter how much you do, how many new things you try, how much sleep you get, how kind you are to your joints, how much effort you put into positivity, there’s always one more – one hundred more – things you should be trying.
It was enough to make me want to curl up in a ball under my covers and cry.
The following morning I saw my rheumy. The report was more of the same – I’m improving, I’ll improve more. Things will get better.
I’m due to get X-rays in February and am very curious to see how those will go.
He did say that he’s doesn’t think going down on meds before my marathon (March 17th) is a good idea, which is disappointing, but I understand the reasoning. I don’t want to not be able to do the race, and I don’t want the race to do more damage than good.
I told him about the problems I’ve been having with the Enbrel pen (button not depressing correctly, bruises and welts, etc.) and my wonderful, amazing, patient, kind, God-send of a nurse gifted me four Enbrel syringes to try out. I am about to do my first one (post for tomorrow!) and am so nervous, I’m procrastinating by writing this.
The beauty of the syringe is that you have complete control of when the medication enters you and how fast. The downfall is that you have complete control and you get to see the whole thing. AHHHHHH!!!!!
I’ll let you know how my injection goes…
I know I’ve come a long ways from the girl who almost fainted every time she had blood drawn.
How do I know this? Because yesterday I went in for a blood draw and got a new girl. I warned her that my veins have a tendency to “roll away” from the needle, making them easy to poke, but hard to draw blood from.
So she pokes my vein, and then a few seconds later – in a baby voice – I hear, “Come here you little vein.”
Eww. For so many reasons, eww.
At this point in a blood draw I usually get faint, but I was feeling fine.
Then I hear, “Oh, we have a squirter!”
Seriously? A “squirter” apparently means blood had shot up my arm. Even looking at that, I was feeling fine.
The other arm did the same roll away, so she went to find a more experienced technician. Through all these pokes I felt completely fine.
So, my veins aren’t cooperating anymore than they used to, but I’m doing a lot better, and there’s something to be said for that kind of progress.
I just have to give my congratulations to Obama. As someone with a chronic disease and pre-existing condition, I’m happy that Obamacare and the Affordable Care Act will have a chance.
There are a couple important ways the ACA will effect Americans with chronic conditions. First, because more people will buy into the system and costs are spread more over the entire community of insurance holders, costs will be kept down for chronic patients. Second, and perhaps most important, insurers won’t be able to deny coverage based on chronic conditions.
Another big bonus: an emphasis on preventative care could help control and perhaps prevent chronic conditions.
So here’s to four more years of trying to shake up the healthcare/insurance status quo, of working giving everyone the right to a healthy life, and of not letting people fall through the cracks of our broken healthcare system.
I’m way overdue for a post, and realized I never told you about my acupuncture experience. So, here goes…
Acupuncture has always really freaked me out. The needles! Ack! But in my determination to let myself try anything to feel/get better, I felt like I couldn’t ignore this option any longer.
A friend of mine is actually training to be an acupuncturist, so she suggested I go to her school’s clinic on a day when their “auto-immune expert” was working. Going to a school clinic keeps the costs really low, and having a teacher there ensures that I’m getting someone who’s really knowledgeable.
So, I went. You can’t really feel the needles, but it is a kind of scary process. I found it impossible to relax and when I accidentally looked down at my legs, I got a bit freaked. The needles don’t hurt being taken out either.
I did have one needle, placed in the front of my left shin (supposedly on the autoimmune line or something), that felt really uncomfortable. A dull, throbbing sort of uncomfortable, not a sharp pain. The acupuncturist took the needle out based on my reaction before I even had to ask.
Afterward, I felt really dazed and emotional. Driving back to work, I realized my thoughts were drifting to a friend’s death I hadn’t thought about for quite awhile. I looked this up later and some sites do say that it’s common to have acupuncture stir up old traumas.
Another thing was that my left wrist hurt, which was where I was hurting the most before the acupuncture. But now it was hurting in a slightly different, burny way for about a day after. A couple days after that, my wrist felt fine, I felt lifted – like emotionally lighter – and a little bit better physically. Weird.
I’m going for my second appointment in a couple of weeks, so maybe I’ll be able to better see and articulate the benefits more clearly then.