Day 14… five things for which I am grateful…. (that prepositional phrase sounds better to me that way… not even because I learned to not end sentences with prepositions… it just sounds better… )….. My family (family of birth, and … Continue reading
It’s really funny… I’ve spent a lot of time thinking about this very question. As an Aspie, logic and math dictate that it was almost pre-destined to happen. Autoimmune disorders run in my family. We have a history of RA. At some point, someone was going to draw the short straw.
Why do I have it? I needed to have it. I was diagnosed just a couple months before my daughter had her first seizure and I had to understand. Then she found out she had nephroptosis and I had to understand and I had to be her champion. Then Adam developed issues with the nerves in his leg and I had to understand. If I hadn’t dealt and coped I may not have been strong enough and determined enough to understand.
But… I understand.
It’s kind of ironic, too, that I do understand, because it means that I can “be there” for people who matter. I can be there because I understand a lot of things (Aspie… Epilepsy… RA… ). When I took up the flag for my daughter and put on the banner of Epilepsy parent, I tried to find that place where I could make a difference. I got some very snarky advice (“If you want to make a difference, send me money so I can “) and I struggled to find my voice. All the while I sat quietly and wrote. I wrote and wrote and I write and write and I answer questions and I provide hugs (real and virtual) and I help. Finally, after much poking and prodding about the fact that I make a difference, I realize that… I make a difference. It wasn’t the difference that I was determined I wanted to make, it was the difference that I needed to make.
Why do I have it? I don’t know. I meet with a lot of derision when I make the comment that I think all of the gods are just god and no matter what you call him/her/it, be you Christian, Islmaic, Pagan or a follower of the Flying Spaghetti Monster or Steve the Lettuce Head… god is god. Is it god? I don’t know. Is it Karma before the fact allowing me to help people? maybe. Is it genetics? yeah, duh. What caused the genetics? Does that really really matter in the grand scheme of things? not really.
The fact is that I do and it is a part of me and it helps to make me who I am. Questioning the why doesn’t change the reality. Quetsioning wastes energy and drags me down. Facts are facts. It’s not good, it’s not bad (most of the time), it’s just different. It’s my different. It’s my reality. And it’s my job to deal with it in the way I need to deal with it.
… okay, it was What little things makes your life easier… but the OCD grammar nazi in my head refused to let me write it.
What little things make my life easier? You know… it’s funny… there are several tricks and tools that help out day to day…
my truck is keyless entry and keyless start which is AWESOME
I have attached a ponytail holder to the drain plug in the bathtub to make pulling it up eaier.
Coffee cups with bit handls so my whole hand fits are good.
pill bottles without childproof caps
rubber bands on doorknobs to make gripping it easier
push on the way out bathroom doors so I don’t have to grab a dirty door handle RIGHT after I washed my hands
automagic sinks and soap dispencers that turn on without you having to touch them
BIG smart phones
pre-cut salad at the grocery store… pre-diced garlic…. anything that means I might not have to use a knife when my hands are not happy.
my e-book reader so I can carry ten books without having to carry ten books AND I can edit documents without my laptop
What REALLY are the little things that make my life easier?
Having someone make a pot of coffee and bring me a cup. It’s even better when there is yummy creamer.
Being able to find somewhere very peaceful and quiet to rest (sometimes a nap). Now that I’m parking a 15 minute walk away from where I work, that is way less easy now than it used to be. I used to be able to walk out into the parking lot (3 or 4 minutes at most) and nap in the back seat of my truck. I miss that a lot.
Shoes that don’t hurt with socks that are warm and don’t hurt.
Conversations about my reality that don’t come off as judgmental or preachy or condescending.
Something I found out yesterday… if I have to fly international (read LONG flight)… being able to fly business class means that I hurt a WHOLE lot less when I land. this isn’t really such a small thing… but… it made a huge difference…
I guess that… since I’ve had my official diagnosis, I’ve never actually tried anything ‘alternative’. Given that I was active and getting worse for probably 2 years before I was diagnosed and I was trying just about everything then, I guess kind of I did.
I tried soaking in epsom salts.
I tried dark cherry juice
I tried salves and creams
I tried eating extremely healthy, eliminating almost all processed sugars and cutting fats
And I had so much inflammation that my rheumy coudln’t believe I was standing up the first day she saw me.
Since I started to take biologics and methotrexate, I’ve not tried anything that wasn’t perscribed other than Tiger Balm and BooBoo oil. Topical helps considerably but it doesn’t take it away. The bilogics can almost push it into nearly remission. Right now, I am more than happy with relying on pharasuticals.
The biggest realization that I’ve had…
That I’m human and I’m mortal and that I can do it…
I’m human. I hurt, I am exhausted, I am incredibly cranky, I am depressed. While I would love to be able to hold myself to a higher standard than humanity, there is nothing higher than humanity. I need to suck it up princess and realize that. Nothing says human more than sitting in the dark wrapped in a special blanket crying your heart out because you are suddenly terrified. Nothing says human more than slowing down so your daughter can cross a finish line and not be Dead F#$(*&% Last in a race. Nothing says it more than breaking down when you are all alone and you are relying on the cheering of complete strangers to motivate you to go just one mile further… or the tears you shed in relief when you see your son’s long strides walking out to meet you to make sure that you are okay… or the utter elated exhaustion when you cross the finsih line and you realize that no matter how badly it hurts you did it. The past five (give or take) years have taught me that I’m human. I need to be gentle with myself. I need to set my expectations of myself correctly and I need to learn that there is only so much one human being can do.
I’m mortal. Go figure. I’ve found myself terrified of dying… more than once… of being put on disability… of being a burden on my family and on society. If it can happen to me, it can happen to anyone. I know RA has impacted my life expectancy. I have read the statistics.
I can do it. Whatever the it is… I can. I may not get it done as quickly as someone else might like. I know that I’ve let people down and I know that it has been unavoidable. I know that I have made most of my family proud and that matters way more than the scathing looks when I let people down. I have made a difference. I may not have made a HUGE difference… but I have made a difference and that matters.
More than absolutely anything else, though, I’ve learned how to be exactly the person that was missing in my life. I leanred how to be that for me and for other people. I’ve learned exactly how important THAT is and whether or not it matters to anyone else, being that person matters an awful lot to me.
What would I have told myself? Don’t listen to what anyone says. You know your body. It is your body. Get you behind end to the doctor and find out what is going on. It isn’t normal for a Disney freak to be so willing to go back to the hotel at 5 pm every day. It’s not normal to take thirty minutes to walk into the hotel from the parking lot… all alone… looking for puddles to try to soak your feet just to make it another 20 feet.
Don’t be scared. Don’t listen to what anyone says. You need to take care of yourself or you won’t be around to take care of everyone else.
I’ve been, honestly, fighting with this post for days. I’m not sure how it makes me feel most of the time. It is just there, kind of, hiding in the background. Being my shadow… or maybe I’m its shadow… I’m not really sure…
The last couple days it has been making me feel scared. Scared enough to go shopping for a different rheumatologist, scared enough to get angry with the people who I have had to deal with on the phone, scared enough to be vocal.
Not that being vocal is anything new for me… or anything different. I’m just not usually this vocal about things when it comes to me. I usually just allow the doctors to be the doctors. They have gone to school for a lot of years to be who they are and where they are. This time I just want them to listen to me… and I really don’t think that is too much to ask.
How does it make me feel?
It’s been five years. It makes me feel like me. Some days I hurt. Some days I don’t really hurt so much. Today… Today, it makes me feel like it is Thursday and the weekend is only two days away.
I knew I couldn’t make it on consecutive days… but this morning is beautiful. I’m sitting on the porch in the fog and drizzle with a fire going in the chiminea and it’s perfect!!! The wet in the wood is making the fire pop and crackle. The morning music is astounding to me today.
Okay… so… I probably ought to have read ahead a little. I guess I kind of answered this one a little. But… I guess I could answer it a whole lot deeper if I try…
So… I had been hurting for a long time. My hands… the front half of my feet… my knees off and on… and then the knuckle bump came. (Nodule… I’m one of the “lucky” 20% who get nodules) and I got scared. So I went to my PCP and asked. It took a couple days to see her… it took 20 minutes after the appointment to get into the lab to get the ordered blood work done (She didn’t tell me what she was looking for) and two more days to get the results back (in a phone call from the PA).
That was the official diagnosis. My Rheumatoid factor was WAY WAY high.
I got sent to the rheumatologist who looked at my hands and feet and said… you have been active for a while. She sent me for x-rays… which showed I had been active for at least 18 months probably more… and that I already had joint damage.
I “should have come in sooner”
okay… 20-20 hindsight. woohoo…
But… yeah… that was my diagnosis story.
Nothing overly glamorous. I would probably have a much more long and convoluted story if I had gone when I started to hurt rather than just chalking it up to my imagination or writing too much or whatever. I might have had a longer story, a bigger fight, a different reality today. But I waited long enough that damage was done and there was no denying my reality.
The other co-dependent conditions… those were diagnosed as I went, in the dr’s office. It was kind of an evolution…
I think it’s kind of weird… today’s prompt… how has it changed my life… I’ve thought about this an awful lot…
I was diagnosed with “forever” stuff just a couple months before my daughter was diagnosed (at 15) with epilepsy. I had made it far enough through my learning to cope with the idea that I had something that would impact my life for the rest of my life that I was able to REALLY be there for my daughter when she needed someone who understood. After having dealt with people doubting my actually having things wrong with me my whole life and wanting attention it means that I knew how she was feeling having people doubt her. Having found out that I’m not crazy and my body really is fighting itself, it meant that, when she started to complain about pain in her back and stomach and she would pale and throw up, I fought with doctors to find out what is wrong. It means that today she still copes with health issues but it also means that she has found the people who can help her.
It meant that I could recognize, in my son, the signs of sjogrens. I had a rheumatologist who would listen. She wasn’t as aggressive in treating him as i wish she had been, but she listened and didn’t say he was too young to be dealing with it. It means that he’s now fighting his fight and I can help him.
For me… it means I have slowed down. I have started to think more about my mortality and trying to take a little better care of myself. It means that I take the opportunity to have an adventure when an adventure presents itself. It means that I try very hard to make the memories while I can because you never know what will sneak up on you and impact your life. And I try very hard to help anyone I can to understand this. Not just understand but to UNDERSTAND.
It means that I think very hard about drinking a can of pop that I haven’t wiped off.
It means that every single time I push the elevator button (especially the buttons where EVERYONE goes… the first floor lobby… the cafeteria floor…) I stop and think and try to push the button with anything that I can that I can either disinfect later or that I will throw away when I get off the elevator.
It means that I think twice about buying a glass of lemonade from one of the kids down the street at their lemonade stand… I think twice… and then I buy it and drink it and make a big fuss anyway… because there are some things that are just worth the risk of an infection, and the looks on their faces and knowing that they will probably remember that they can succeed at lemonade stand are worth it.
It means that I wear fingerless gloves what seems like all the time.
It means that once a week I get a shot in my stomach and have a headache the next day and I get an infusion for 30 minutes once a month.
It means I have very thin hair because methotrexate has caused a significant amount of it to fall out (it’s a chemotherapy drug after all).
It means that I have to think before I do things. I take into account how much my hands are hurting (about a 7 this morning for some reason) before I pick out the cloths I’m going to wear for the day. I may have to put on a couple pairs of shoes before I find the pair that doesn’t make my feet hurt worse because they are floofier than normal. I carry pills and gel with me wherever I go so, if it gets bad, I can fight back.
it means I get tired far easier than I should and when I’m exhausted I hurt almost logarithmically more than when I’m not feeling tired and stressed.
It means I wash my hands about fifty times a day and I sing happy birthday in my head twice every time I wash my hands… and I invest an incredible amount of money on hand cream (and I get to enjoy the smell of hand cream seasonally!)
I have to think more about insurance benefits than I ever dreamed I would ever have to.
I treasure skype calls more than I ever dreamed possible.
I’m way less apt to tolerate bullshit. I don’t have the time or energy for passive aggressive garbage or for someone who has nothing better to do than to dump on me.
What does it mean to me? How has it affected my life? It means that I have a whole new normal. I’ve learned to treasure people far more than things. I’ve learned to be gentle with myself whenever I can. I’ve learned to use my phone as a computer and a camera so I don’t have to carry any more than absolutely necessary (good thing it is about ten times more powerful and versatile than my first computer was) and I am drooling over the Samsung Note 4… I really REALLY wish I were closer to my upgrade date for my phone… I rely so much on technology every day… I become fixated on it.
How has it changed my life. Some for the better… some not so much. But it is certainly nothing like it was before.
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So… I did my RA introduction a few days ago. It’s been a REALLY long week this week and I’m feeling it this morning… so I thought I would sit down, slow down, and catch up with myself. So here … Continue reading