My super-wonderful-can’t-wait-until-it’s-bedtime-duvet-cover #NotABigStripePerson
I do a lot of
googling research. I look up everything imaginable. Some of my latest searches- when is the best time to eat a banana for optimum nutritional benefits? How often should I bathe my indoor cat?
Sure I look up all of my medications and their side effects. I have a drug list saved on drugs.com. I look up what research is currently being done that will make living with Rhuematoid Arthritis just a little bit easier. But I spend a lot of my time online looking for hope. Looking for inspiration. Looking to find someone with RA who is doing ok. I don’t mean in remission. I mean someone who has a marriage and family and a full-time job. Someone who has daily pain like me. Someone who loses their hair and gets mouth sores from methotrexate, like me. Someone who takes a nap every weekend and feels guilty about it but knows that she needs it especially after a hefty methotrexate dose on Friday night.
I haven’t found that person yet. Most of what I have found is downright depressing. Google “rheumatoid arthritis” and you’ll bring up photos of hands that look painful. You’ll read that people with RA die 10-20 years earlier than those without the disease. You’ll see the medications prescribed and how dangerous their side effects are. You’ll read stories of people that can’t get out of bed, that had to leave their jobs at 30 years old.
I am in no way saying that I don’t appreciate and pray for those suffering so hard from RA. When I was diagnosed two years ago, I couldn’t walk down the stairs. I literally had to slide down on my butt like a child. I would fall asleep while getting my haircut. I couldn’t use my left arm to wash my face or hair because my elbow was locked. I was 32 years old. I got a glimpse of what RA could really do to me if I didn’t take action. And who knows? I might take all of these meds and make all of these changes and still end up far worse than I can imagine.
So what can I do? I can create hope and inspiration for myself. The first thing I’m doing is putting into action my realization (and research!) that I need to move more. Moving more will help my joints (or so WebMD says). So here’s my plan. I signed up for a 350,000 steps in March challenge via fitbit. (FYI- I was averaging about 3,000 steps a day in February.) Sure it’s only March 8th but I have managed to fit in a 3 to 5 mile walk daily. The catch? I walk in my basement. I pull up cheesy Walk Away the Pounds videos on YouTube and off I go. No one can see that sometimes I have to slow down or that I can’t always do the arm movements because my elbow is killing me. Once this weather warms up in Baltimore, I might even take my show on the road. Here’s an example of what I’ve done today:
Every time I look at my fitbit summary, I feel inspired. I have hope that I can accomplish goals despite this disease. And I can only hope that my hope somehow inspires you.
Such a good read. I see and hear the term #diabetes used to describe what people are eating far too much…
Short version of my relationship with Rheumatoid Arthritis: diagnosed in Dec 2011 after 3 months of being unable to use my left arm and having extreme difficulty walking, amongst other things. Immediately started on Methotrexate, added Humira in June 2012. Stayed on both drugs and aside from the crappy side effects, I was doing quite well. June 2013, I got very ill with an infection. My rheumatologist and PCP had me go off Humira and Methotrexate to try to let my immune system fight the infection (I also have Type 1 Diabetes, so my immune system is virtually nonexistent except when it wants to attack itself). Eventually I was treated with the right antibiotics and steroids but remained off of my RA meds. Surprisingly, I felt good. My rheumatologist warned me that my RA might come back with a vengeance but we both agreed that I could stay off my meds so that I would have a better chance of not getting sick over the winter and during flu season.
During my months off of my RA meds, I spent a lot of time visiting specialists to try to find out why I was so sick. One visit in particular stuck with me. I visited an oncologist (for hopefully the first and last time) and as we went through my medical history and list of medications, he paused, and asked me if my rheumatologist knew I had Type 1 Diabetes. I said of course and asked why. He said that, in his opinion, I shouldn’t be on a biologic because my immune system was so compromised. He confirmed what I had read on my own and what I was always concerned about- that my chances of getting lymphoma definitely increased with having an RA diagnosis but that they significantly increased being on Humira. I felt relieved that I was currently off the biologic and my plan was to never go back on it.
Fast forward to January of this year. My RA came back and with a venegenance. Both of my elbows are screaming in pain, my hands and wrists are constantly aching , fingers swollen..you get the point. Ibuprohen, Naproxen, compression gloves, rest, heat, ice..nothing seems to make a difference.
I saw my rheumatologist this morning and he recommended that I immediately start back on the Methotrexate and Humira. His reason being that they worked so well for me before and that we really needed to treat my RA aggressively, as it had come back strong.
All day, I have wrestled with the decision of whether to go back on my meds or not. I’m hurting, so much. My wrists and hands hurt when I shampoo my hair. They ache while I drive and the thought of having to slice up a vegetable makes me wonder if my kids really need them after all (yes, I know they do). A quick fix would be great. I know that taking the Humira injection will be horrible..ice cold and so painful. But I will feel better, possibly after the first dose. And then there’s the Methotrexate. With this one I won’t notice things getting better for about 2 months. The side effects will be awful- I’ll have intense nausea for 2 days after taking it, my hair will fall out, I’ll get mouth sores, and I’ll be more tired than I am now, if that’s even possible.
I can’t go on with this much pain and inflammation, especially since it will most likely get much worse. I have to do something. But what do I do? Is it possible to start myself back on both meds with the goal of eventually staying on as low of a dose of Methotrexate as possible? Or do I try to make it only on Methotrexate and suffer for the next two months, if not longer?
Today’s Daily Prompt: Burning Down the House
Your home is on fire. Grab five items (assume all people and animals are safe). What did you grab?
Clothes– I imagine this fire happens at night and I would never want to be seen outside with pjs on, so clothes- most likely yoga pants and a sweatshirt.
iPad– I think I would unconsciously grab this. Why? No idea. I tend to take it around the house with me. It sleeps on the nightstand next to me. Yes, I have an issue. I should probably look up a post on how to split up with your iPad, but for now, it’s not going to burn.
Purse– Everything I need is in my purse. And I should say, I hate the word purse, I prefer bag. Not handbag, but bag. My bag. My blood glucose meter and extra insulin pump supplies are in there, my iPhone, car keys, juice and fruit snacks for the unexpected low blood sugar, my wallet, extra contacts, lotion..the list goes on and on. In fact, if my iPad was in my purse and I had yoga pants laying next to it, I’d probably be set for the fire.
Coats– For my children. Since they argue about wearing a coat on a normal day when it’s 5 degrees, I imagine that in the rush of getting out of the house, they’d be cold outside. So, 2 coats it is.
File Box– The equivalent of my purse, for our family. Birth certificates, social security cards, car titles, etc…the funny thing is, I don’t know that I would actually grab this box. I created it so I had a central place where all of the “important” stuff goes and of course, it could be grabbed easily in case of emergency. But I really don’t know if I would grab it- I just feel that I should put it on this list.
As long as my husband, kids, and the kitten are safe, I’m good. Clothes are replaceable, as are Xboxes, birth certificates, and even my beloved iPad.
I used up my last Enlite sensor last week. Due to an error in Minimed’s system, my order from weeks ago had been caught in limbo until tonight. (My order just shipped, huzzah!) Was I super annoyed with Minimed? Yes. Did I spend hours on the phone with them? Yes. Did I die without having CGM enabled? No. Not even close.
I truly thought the past few days would be horrendous. I considered not going to work, staying home to monitor my blood sugar behind closed doors. I seemed to have quickly forgotten that I spent the first 22 years or so of my Type 1 life relying on a blood glucose machine and the pricks of my fingers. I forgot that I used to go hours without a single finger stick. I relied on my long acting insulin and, more importantly, how I felt.
Over these past few days, I had a few nighttime lows- in the 60s, yet I woke up on my own and not to the sound of a screeching alarm. For the most part, every time I checked my blood sugar it was pretty much on point.
As convenient as an insulin pump and CGM are, I really need to stop relying on them. I need to be able to go an hour and not be constantly looking at my screen to see which way my arrows are going. I need to make a more conscious decision to not correct every little blood sugar because that usually results in a reading which is higher or lower than necessary. I need to realize that I am Molly not Molly, the Type 1 diabetic. I’m working on it 🙂
Here in Baltimore, it’s cold. I have
quite a few an enormous collection of scarves and although most are pretty to wear, they don’t actually provide much warmth. I have a bunch of extra Homespun skeins laying around so I grabbed one and made this infinity scarf in just a few hours over the weekend.
Here’s what you need:
– 1 skein of Lionbrand Homespun (or another comparable yarn of your choice)
– size 15 needles
Cast on 25 stitches. Work in the following pattern until the piece measures about 50 inches or so. Then sew the short ends together- ensuring that you’ve made one twist in the scarf before sewing.
Pattern- k1, p1, repeat from beginning, k last stitch
Today’s Daily Prompt: Free Association
Write down the first words that come to mind when we say… home… soil…rain. Use those words in the title of your post.
Home: comfort, safety, family, fun, kitten, kids, husband, relax, bed, space, myself, free
Soil: ground, flowers, growing, vegetables, wet, mud
Rain: sleep, nap, sound, relax, water, drip, cozy
Today’s Daily Prompt: In a Crisis
Honestly evaluate the way you respond to crisis situations. Are you happy with the way you react?
Crisis occurs. I panic. Then I detach myself from it emotionally. Crisis is averted. I cry.
Make sense? To me, yes. Healthy? Doubtful.