Rebuilding when your world crashes in flames

LIEFWhen I was diagnosed with arthritis years ago, I was okay. No big deal. Osteoarthritis happens to everyone. Fibromyalgia not so much, but hey, I was learning to adapt, I had a mild case. But over the past year, I experienced more pain, more problem with moving. My levels with inflamation were not going down. In fact, they hadn’t lowered in quite a while. While inflamation rate is only one diagnostic tool my specialist used to help treat me, it was one that concerned both of us, because over time, it should be going down as I was doing everything I was supposed to be, well except losing weight, and even that was happening at this point. So why was I in so much pain?

So March/April comes and I’m in agony. My hands are suffering. My hips and back are aching like a bugger, and walking has become an agony I struggle through. I have nine vials of blood drawn, and bless the vampire lab people who are some of the greatest in the world as they know how to stick me once and be done with it. I saw my doc, who is actually a wonderful man, who allows me to argue with him over getting cortisone shots in my wrists for my carpal tunnel so I can put off surgery. (Can you tell I adore my doc?) The words that came out of his mouth made the world swirl around me in disbelief. The verdict was non-reactive rheumatoid arthritis. Basically, though the test for rheumatoid arthritis came up negative, all of the other testing shows it as being positive. Then the other shoe dropped- my fibromyalgia was worse. So, I needed to start medication to stop my arthritis from destroying my joints, particularly my hands, hips, ankles, and back and going into my neck. The choice was to start a medication that could possibly hurt my eyesight. *blinks* What? You mean my already sucky, legally blind in one eye, eyesight? Yup, that would be the case. So I had to see an opthamologist and get clearance first. Then I took my first dose of plaquenil.

But the pain didn’t go away. Some of the inflamation did. Yet, I was having migraines almost daily. My back and hips were screaming in pain. We won’t talk about my hands. Moving was a chore that had me eating Tylenol and Aleve like candy, which isn’t good at all. I asked my doctors for help, but they all defered to my specialist. I called up his nursing staff and cried. I couldn’t bear the pain anymore. I was reading The Chronic Pain Workbook. I needed something to help. I would do whatever was necessary, but I needed something to help me restore some kind of normal life again. My world crashed hard and it wasn’t getting better.

Enter the emergency appointment. We talked. He poked, he prodded. He made me walk and bend. He squeezed my hands and made me squeeze his. I showed him my pain tracker app I had gotten and been using faithfully for a few weeks, and I showed him the workbook. I was open and honest about needing some kind of pain medication so I could function daily without constantly calling out of work. Then I admitted my shame– taking too much over the counter medication to get through the day and night. I know better. I worked in the medical field. I know the effects the meds have on the body long term. But I needed him to understand how desperate I was in stopping my pain. My doctor made a face at me, told me to stop taking the meds, he would give me something better. I started crying. The idea of pain relief was amazing. I was moving that weekend and I would have pain relief so I wouldn’t have to suffer. I also had to get labs done again. *blinks* Sure, labs. No problem.

Problem. What no one realized, even me– plaquenel alone wasn’t quite cutting it. My inflamation levels went back up. Like, up a lot. I was shocked. I was informed I would have to start the one medication I’ve been dreading from the time I was told about my diagnosis. Methotrexate. Just the sound of the medication bothered me. I knew others who take the med and have problems with it. I have GERD, which could add problems to taking this med, plus I’d have to take folic acid to help counteract the effects of the med, which could include hair loss and other fun things. Can you see why I was suddenly terrified by having to take the med?

1499471_442618135838216_1405824506_nThen they told me, no worries, you only need to take the med once a week, just 3 tablets of 2.5 mg each. That’s not too bad, I thought. Take it on Tuesdays, they said. Beautiful, I thought. My days off. I took the meds, thinking, there will be some discomfort but no big deal. I was so freaking wrong. Pain like nothing I ever experienced hit me. My very joints BURNED. Even the joints I didn’t have trouble with burned, ached, and I felt nauseous. I had a migraine from hell, a fever hit. I felt like dying. If this is what I could expect every week from just 3 tablets once a week- I was doomed. What the hell?

Week two was slightly better, still burning in the joints, still the migraine and fever. But instead of lasting two days, it only lasted for one and a half. Improvement in some ways, crappy still in the long run. Still my hair is thinning slightly and my hair always feeling like it hurts. Taking the pain med helps. I can actually participate in daily life and though there’s pain, I can actually go forward with minimal pain and little long term effect. More importantly, I’ve learned to pace. That’s amazing. I can walk my dog more than 1/4 mile now. It’s been so long, I’ve forgotten how nice it feels to play with him and walk a while without my back giving out.

Now, I still have to make choices. Sometimes I have to use an electric cart in the grocery store instead of walking. Other times I have to use the slowcooker and make dinner in it, because I’m too tired otherwise to make supper when we’re home after work. However, I’ve learned that occasionally I can push myself a little, and I’m okay. I can choose not to push and it’s okay to let it go. That was the hardest thing to learn because I’m not that type. I hate having to put more on my fiance than he already handles. But sometimes I have no choice. But since the move, with the medication changes, I’ve lost another 5 pounds, I’m doing a bit more, my attitude is better, though I still have pain, and today we’re sitting watching the Dolphins play the Texans (go Dolphins!), and I’m okay.

My world crashed hard. It forced me to relook at the world completely differently. I need to make new choices when it comes to typing and writing. I cannot write tons like I used to by hand. Hello Dragon. I bought a couple of books to help get up to speed on dictation and how it can help me write my books. That’s my new goal. 🙂 But I’m also putting myself first for a while. This arthritis thing– it’s not for sissies. I have to get control of it so it won’t put me out completely. It’s won for a while now and I’m a bit tired of that nonsense. So, I’m learning to pace, learning to put things into action, slowly but surely. Even learning how to be online again. Weird, huh?

But I’m getting there. Thanks to my doc, who lets me argue with him when I’m concerned that I’m taking the easy way or that something will be bad for me. He’s one of the best and I’m so glad he’s on my team. Plus, I know he’s a believer in taking things slow and steady. Not taking the easy way just because. He knows I’ve been overly concerned because I’ve fallen further than I could easily admit. But we’re back on track. Hopefully this med will be the one to help knock this crap into remission. Otherwise, who knows what might be next?

Dawn of a New Day— Sorta, Mostly, Kinda…

I’m sitting here, enjoying my day off from the EDJ, even though I’m doing the necessary evil around the house. Why? Because for the first time in days, I’m no longer weak, cranky and in the bathroom every 15-20 minutes. I do not wish the norovirus on anyone! It was literally the shittiest 2 days of my life!  :mrgreen: Beyond that, it made me realize that I honestly needed to take my gluten intolerance diagnosis more seriously. I’ve been slowly removing gluten from my diet– and doing well, but I hadn’t gone that final step– and I’ll be honest, I didn’t want to. Why? Because who wants to give up bread, cake, OREOS? *wails* I’m serious, the idea of giving up my Oreos is the only reason I’ll cheat. Not to mention the ten boxes of Girl Scout Thin Mints sitting in my pantry. Of those ten boxes, four of them are mine. The other six boxes are the male’s. But– they have gluten. *sigh* Do you see where this is going? Do you? 

So, laying miserably in bed, between bathroom runs, I had co-opted the male’s Ipad. (Still not sure about it, but I think I want one– it could be useful.) Did more searching and reading on gluten free, especially a couple of magazines available on the Ipad but NOT on my Nook Color. *Gasp* The Horror! The Shame! (I am not happy about that, by the way, just saying!) Realization hit that I don’t have to give up everything I love– but I do have to start cooking and baking to have things I enjoy– like bread. (Which reminds me–I still need to buy the breadmaker!) There’s going to be a learning curve and in some areas, my grocery bill is going up instead of going down, which it had been going with my couponing and such. Let me tell you, it’s not something you want to tell the one you love, “Dearest, with my lovely new immune system disability, we have to pay more for certain foods.” Crash. Burn. Boom. Sigh.

Then I started reading some of the gluten free books I bought, especially on making my own mixes for flours for breads, cookies, brownies, etc. I realized if I could get some of these in bulk, premix them up into special cannisters. I can have my own mixes like I used to buy and it might just save me some money though not as much as before. So, part of me feels better, though part of me mourns for the easier days of gluten laden foods. Because here’s the deal– there’s hidden gluten in many of the foods you eat. Soy sauce– gluten. Yeah, I didn’t want to believe it either, but it’s true! Even some ground spice mixes have gluten in them. I know, ridiculous, isn’t it? But yet, I’ve noticed a big difference– since cutting out the gluten, I’ve had less headaches, less migraines and my intestinal tract has been less irritated. (Except for last week– that was WAY DIFFERENT!)

So, it’s a dawn of a new day for me. I’m embracing my gluten free status– though part of me really really needs someone to develop an Oreo cookie recipe that’s gluten free. I’m serious. Because right now, that’s the only major thing I’d probably cheat over. That and those hot rolls from Manny’s Chophouse with the cinnamon butter. *sigh* The rolls I can learn to make something similar, I hope, but Oreos….I need help. I need someone to come up with a recipe or the company to create a special Cyn’s Gluten Free Oreo Cookie. That would be even better. Because 1 out of133 people in the US are either gluten intolerant, gluten sensitive or have celiac disease. And that’s a lot of people’s needs who are being ignored when it comes to gluten free goodies like Oreos, crackers, ice cream and more. Food manufacturers need to be a little bit proactive here. It’s an untapped market that could really bring big returns and loyal customers, just like in the reading world.

Cyn and the Pedometer

I bought a pedometer the other week, finally getting it to work on Sunday. So, I wear it thinking I’ll be amazed at how many steps I take every day. Here I am thinking I’m doing at least 3k a day. At the end of the first day at work, I look down at it and blink. It’s almost to 3k, but it’s not as many points as I thought it’d be worth. I was seriously disappointed to find out that I need to add more walking into my day. It’s not that I’m lazy, but honestly, with the hot weather and high humidity, I’m not one for being outside to increase my likelihood of having an asthma attack. Yet…there’s this part of me that’s wanting that 4k mark badly.

So, I’m plotting out my strategy for this weekend at work. I’ll stand more at my workstation, doing my walking in place to get more steps in. I’ll do my stretches, which my doctors are requiring of me anyway for my fibromyalgia. Those stretches count as they add up over time. Then on my breaks, I’ll walk a bit more instead of sitting and talking the entire time. That should help too. Perhaps I’ll even go for an afternoon stroll once I get home from work. There’s got to be a way!

Me and the pedometer. It’s an evil thing– and now I’m addicted to making that number go up!