Advocating for myself is hard...

Just to warn you, I've been writing this post all night. It's 4 AM now and I think it's OK for it to be published, but I'm sure when I'm more awake I'll see more things that should have been edited. Still, I'd rather not put off this post, so I'm clicking publish and leaving it at that.

A couple weeks ago I had such a horrible RA flair-up that I just went to the ER to get some relief from the pain. There is a triangular muscle group (Trapezius) in the back that goes up the neck and to the shoulders, and on my left side this muscle group felt like it was on fire, tight & stiff and the pain would not stop! (on the right too, but more so on the left) I lost loads of sleep. The morning I went to the ER I hadn't slept except maybe an hour or two. After Kevin left for work I napped a little bit but a short time later I couldn't keep asleep, it kept waking me up. So I took an hour and a half to get dressed, and I bandaged my arm up in a make shift sling because the weight of my arm was too much on my back. Then I called Kevin to beg for some way to get to the ER. I certainly couldn't drive. He called our friend from church, Juliet, and she kindly came and picked me up and drove me to the ER. Kevin got a ride to the ER from a friend of his from work. So I spent the rest of the morning, and a little bit around noon waiting to see the ER doctor. He prescribed me pain medications because my current doctor doesn't give me anything for severe pain. He told me to see my doctors after some rest for further treatment.

Kevin made me an appointment for my Rheumatologist and I got the appointment relatively quick. She reacted very negatively to hearing that the ER doc prescribed me pain meds and said something along the lines of we don't do that here. Ah, Whatever! I needed relief and rest, I was grateful for it! It was the very thing I needed to get through that very painful flair up, which I'm thankful is done!

For the last few months my feet have become (a) HUGE (issue)! I literally can only wear three pairs of shoes, and one of the pairs are getting to be too snug, if the edema on the tops of my feet keep swelling at the rate they've been, I'll be down to one pair of flip flops and maybe showing up barefoot to certain places before too long. I'm not happy about this. When I told my RA nurse a couple months ago she seemed to only be concerned about if it was causing me pain, which it really isn't so long as I'm barefoot. The tops of my feet are very tender and feel bruised if touched, but really that's it. So I spend all my time at home barefoot. Thank God it's summer and that's appropriate. But last month when I was visiting my cousin in Montana I was wearing flip flops in snow, and it seemed a bit ridiculous! I'm currently shopping around to find a pair of decent shoes (that I can dress up or down) that work with this edema. I know with RA I should have better shoes than the ones currently in my closet, but right now these swollen feet are (literally) pressing the matter to happen sooner rather than later. I've been to several shoe stores and have yet to find something that works. After payday I hope to go to a specialty shoe store and see what I can find. Back when I did the arthritis walk I got a business card for a shoe store in Everett that seems promising, so I hope to go there soon.

Back in the start of April I submitted a records transfer request to send my records to a different clinic that I hope to start using. They have 6 Rheumatologists in one place so I believe there will be someone who will listen and help me there. Anyway, the current place never transfered the records. So I filled out the form again and when we went to my appointment last week I submitted ANOTHER in person. This still hasn't worked. I called the new place today and they still don't have anything. I'm going to call the current one in a few hours and see what they have to say.

I have a nurse advocate from our insurance company who calls to check up on me a couple times a year. She calls to make sure I'm getting the care I need. She made her latest call yesterday and asked about my arthritis and if I'm finding my treatment to be working. I told her all about this huge issue and she instantly jumped on board to help me. She's going to call me again in a week and if the records still aren't transfered she's going to call my current clinic to push them to do it! WOW! I'm so not used to fighting for myself, and honestly I've let this go two months simply because first I went on a trip to my cousin's house, then I had this flair up, and then after that my in-laws came to help with spring cleaning. The whole time I've wondered what I'd do about it, but have been distracted. Since they weren't doing it I thought about going back to my general practitioner and asking him to request my records be sent to him for my annual physical, and then to have his office transfer them... but I just haven't gotten around to that, and now I might not need to do that extra step. If this works I'll be very grateful. The pain I had for almost two weeks was some of the worst in my life, and it's really made me rethink things such that I can see now that I really should have better care than this from my doctors. Some of my closest friends who've been praying with me about this have been telling me that all along the way, but I'm so reluctant to stick up for myself, I don't know why.

At times I've asked about disability. I've chosen to not work for the last 4 years because I know my physical limits and I just can't do the 'daily grind' anymore. Sometimes this is really hard. I don't feel like I have much to talk about with others since I'm a disabled housewife. Every time I've ever brought up the idea of disability to my current doc I've been told things along the line of "no, we want you to keep moving as much as possible." Now I'm not seeking disability status to claim monetary benefits. I don't have enough work credits to qualify for it anyway. But there are days where I must run errands and then because of all the walking I end up sleeping for a couple days after that, or up all night that night with cramps and pain. I know that if I could have that closer parking spot sometimes, I could save a bit of energy that I need to not over exert myself and still be able to do more later. I am all for walking as much as I can when I know I'm doing well, and I willingly will park far to have a nice walk if I'm up to it, but on the other days I tend to wait for Kevin to get home so we can go out together so I can be dropped at the door while he parks, or to wait in the car. It's pitiful. A couple nights ago we went to the movies (Saw the latest Night at the Museum movie, that was a lot of fun!) and afterwards we went to Safeway to buy another 5 gallons of water. Well, after sitting in the movie theater chair for the whole movie, I started having a hard time walking again, so I stayed in the car, as I often do, while Kevin ran in. As I was waiting I saw a woman of similar build as me, who was walking in the same stiff gait as I was and she had parked in the closest handicapped spot. I got to thinking about how in those few seconds I saw of her life that she and I probably share the same affliction and that whatever her journey was to it, she had a doctor on her side who put her in disability status and she had her placard. I noticed she was maybe a decade older than me, but probably not any more than that, and I pondered if it was an age thing, is it just simply harder for younger people to make the case that they need certain helps? But then I got to thinking about my issues with this clinic and having to go to the ER for pain management, and how none of this was quiet right and I really got to thinking, I NEED TO GET ON PEOPLE'S cases about all this. I was also empowered by reading this blog post about winning one's disability case and really learned a lot, the key being that to win your case you need to not spend as much time proving ones illness, but proving how it impacts your life and why/what it limits you. I got to thinking about how it's not intentional, but I tend to downplay this issue a lot. I rattle off quickly the list of ailments, but I don't talk about the dishes that fill the sink, counter, and floor near it (now no longer an issue, for now, thanks so much to the loving help from my mother in law! I'm proud to say so far I'm keeping it up too!) or the carpets that haven't been vacuumed in ages, or the rest of the list of house chores I put off because I can't do them, or that get backlogged because I just can't do as much as I once had. I realized these are the things I do need to yell to a doc about!

In a month and a half I turn 30. My goal for my birthday is to have a good pair of shoes, a new appointment set up at the new office, discuss disability status, and start seriously shopping for the walker I know I could use on my worst of days. A year or so ago I just got fed up one day and bought myself a cane in the grocery store. I use it maybe a day or two a week, but I'm in no means dependent on it. The doctor I currently see wasn't going to recommend it because she wanted me to move through the stiffness and not be dependent on devices. The problem being that when I need it, before I had it, I WOULDN'T move around AT ALL and now with it I CAN! And I know this will be true with a walker too. I won't need it every day. I'll have my days with nothing, and I'll have my days with a cane, and I'll have my days with a walker, and all of it will be so I AM able to keep moving! Right now I have my good days where I can move rather freely, and then my days where I need the cane, and then days were standing for more than a few seconds is painful and trying, it's for those days that I plan on having a walker. This should help me keep up better around the home, and hopefully keep me from missing as much church as I have from time to time. I'm hoping my new doc will be on board with me regarding this.

If you're curious about what this latest flair up looked like, here is my pain map. I'm glad I save myself a copy. to get a better view of it, right click the image and open in a new tab.