In the spirit of keeping it real, this is the post I have no idea how to write. I want to be honest, but I don't want to be a complainer. The whole point of this project was to give you all a glimpse into my real life, but even I don't like to think about my reality more than I have to... and if it's not fun for me to look at, it certainly won't be that much fun for you to read about.
So in anticipation of that, I'll just let you know that tomorrow's post will be all about Riley, and that should keep you smiling through this fourth installment, Dealing with Disease:
Might as well just kick it off with a bang. That top photo is of my daily medications. As I was sitting with friends at Panera a few years back and opened my purse to take my meds, my friend Nick cracked himself up joking that I should get one of those old lady pill keepers. Imagine his surprised when that's exactly what I pulled out of my purse! :) As you can see in the second photo I have my days-of-the-week pill cases (not to be confused with days-of-the-week underwear that I had in grade school), and they are separated into Breakfast, Lunch, Supper and Night. My niece was very impressed with the night dosage when she watched me take a handful of 11 pills in one swallow.
I'm a professional, people, don't try that at home.
The bottom photo is of my nebulizer, which has gotten a lot of use this summer the few times I've had to venture outside and I've reacted to the air.
My reality is that I have to take medications to help my body sleep, eat, breathe, go to the bathroom, move my joints and fight off pain. Nothing in my body can't be touched by inflammation, and while it seems like these meds aren't helping that much considering my current situation, when I've had to go off of them for periods of time I've realized just how much they do help. It's hard for people who see me to believe, but my pain could actually be much worse.
There are medications out there that can help the disease more than the ones I'm taking, but my body has developed reactions to all of them. Many have been allergic reactions where I can't breathe and my throat starts to swell shut. Others that I've tried caused migraines three to four days a week. So for now I'll stick with the myriad of drugs I take and hope that someday there will be one that my body hasn't figured out how to reject yet.
Next up are my "living aids" as they are referred to by the doctor. The top photo shows my cane and my handy-dandy crutches. The cane I can get by with on very few occasions around my house, but mostly I'm on the crutches. Those ergonomic crutches have been an absolute God-send, and they have spring-like shock absorbers built in so when I push down with my hands they have some give. It really does make a huge difference since my shoulders, neck and upper back are just as impacted as my hips and legs.
Even if some part of me is feeling a little better or I think I can get away with the cane, it's safer for me to stick with the crutches because any joint can flare at any time. I can suddenly not be able to move or put pressure on my ankle, or my hip and knee will flare with pain... and that could change again in 10 minutes. So sometimes the crutches are as much for stability and balance when the odd pain pops up as they are for easing the pressure on my hips.
The second photo is of my grabber to get things off the floor or high places... although Tyler enjoys using it to take Riley's toys and move them from one room to another. :) It only makes sense that in my house their favorite toys are the grabber and the old canes and crutches shown in the last photo. Needless to say the little ones are quite accustomed to my limitations.
Oh... here's my favorite! My super-duper handy walk-in tub. You can read more about how I got it by clicking on this link, but basically it's my own version of heaven in my home. I hadn't been able to get in and out of a tub in a long time so having the ease of the walk-in feature, as well as all of the safety bars, has been great. Add in the hot water heater I got for my birthday and you get one happy girl soaking. Between the heat and the buoyancy of the water, it's really when my body feels best.
Since the episode where my friend Jenny about had a heart attack over my little Lifeline malfunction, looking at this contraption cracks me up. I'm supposed to wear that little button on my wrist and if I ever need help I hit it and the Lifeline people speak through the box in the top photo and ask if I need help. I cannot imagine a situation that would be bad enough for me to actually hit the button and endure the inevitable "She's fallen and she can't get up!" jokes that would ensue, but it's nice to know I have it if I need it. (Actually nicer for my mother to have her mind at ease that I have it if I need it.) :)
Here is the little exercise corner of my house. Across the room is the TV that shows my episodes of Alias to keep my mind diverted while I try to do different stretches and exercises on the therapy ball, as well as the elliptical machine. The elliptical, I'm convinced, is the only reason I'm still walking at all. It has a bit of rebound to the step so it helps my body do the motion, and keeps my hips mobile. I used to actually work out on the machine, but now it's less about exercise and more about short little bursts of keeping my hips and knees moving. I had saved up some money a few years back to buy a much cheaper model at Walmart. My friends Meg and Kelly came with a van to help me get it, and had with them extra money to take me to Scheel's and get this one instead. I still have no idea who all pitched in for it... they knew I would fight them on it and wanted me to take it without guilt. (My friends know me well.) So, if you are reading this and had something to do with it, know I say a little prayer for you every time I get on it... even when I'm swearing about having to do it. :)
When I was at the rheumatologist's office last time he asked me if I do any stretching, and I told him the things I do on the therapy ball. He seemed surprised and said, "Oh, you're able to try that?" I assume he thought the pain would be too much. After we left I told mom that if I knew he didn't think I could do it I would have stopped a long time ago! I know it's not optional, though, so I do the best I can.
And these photos are representative of the people who help me function. The top photo is of the groceries that Linda gets and delivers for me every Wednesday [she declined to stand next to them in the photo :)]. The second photo is of Ron, my self-proclaimed drug dealer. He's been delivering my prescriptions to me for about two years, and it's just been in the last few months that Riley has finally stopped trying to bite him! The photo makes it look like Riley is still giving him the evil eye, but really he was just in between lunges of trying to lick Ron to death. And the third photo is of the cleaning supplies Dawn uses every other week to clean my condo for me.
I also have a home nursing option for when I get sick so I can stay in my home instead of going to the hospital, and I have neighbors that are always willing to lend a hand... whether it's to take Riley for a walk, pick up his meds or take out my garbage, I can email Candace or Laura and they've never once batted an eye at helping me. I was never one to accept help easily but I have learned that most people have purely generous hearts. And I am so grateful.
And lastly, these photos show the difference between how I want things to seem versus how they are. I noticed that discrepancy as I was taking pictures last week... it was supposed to be of LIFE, not life as you'd like it to look. The photo of my bed made prettily makes it seem like any room, but in reality the head and feet are usually inclined and I am propped on pillows to sleep in an almost sitting position. The anti-gravity chair looks lovely, but usually it's situated with pillows to prop me up and so my bones aren't touching anything firm. Not as cute but much more comfortable.
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So, real life? I've gone out to eat once this year, and paid for it in pain after. I can count on my hands the number of times I've stepped foot outside my house since January, and most of those times were to go to the doctor or have blood work done. I don't drive anymore. I haven't been able to travel home to see my family because the two hour drive is too painful and sets me back. The last time I tried to go out with friends I got out of the car and my joints had frozen up and I couldn't move so they took me straight back home. Let me tell you, being stuck on a sidewalk doubled in pain on Main Street can humble a girl. I can't be around my friends if they have the sniffles because I'll wind up with pneumonia. Migraines are a regular occurrence. I haven't sat in a movie theater or gone to church in three years. I used to sing... it was my thing. I wasn't the greatest thing ever, but it was my way of connecting with people. I can't do that anymore. Most every gift I had, every talent I possessed, every freedom you can think of, I no longer have.
Bottom line, people, I am filled with joy. I'm exhausted, I'm in pain, I'm just getting by. But I am so incredibly blessed. I have a lovely home, an adorable pup, family and friends who care and people who love me, not despite my disease but because of who I am. I am blessed because I take nothing for granted. I love what I have instead of yearning for what I lack. I choose to be happy, and I am. It really is that simple, people. Start every day by being thankful and celebrate your life instead of devaluing it. I am so very grateful for each of you who lift me up and celebrate my life with me, and you should know I am celebrating each one of you every day.