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.
For the most part, I work really hard at being little miss mary sunshine. Sometimes it takes more work than others. Sometimes it is pretty much cake. This early morning I’m sitting in the chilly (62 in the house) morning house… the only sounds this morning are the dog chewing her dry food and burping and the not so rhythmic click of my fingers on the keys of my keyboard.
I’ve been having stomach pains. The symptoms have seemed to be (to the Dr too) generally related to a gallbladder problem. Dr poked and prodded and sent me for an ultrasound. It took a week to get the pre-approval from the insurance (want to be sure the chick without any “women’s” plumbing after that total hysterectomy isn’t just trying to see the baby) and the test was done yesterday.
The lady that did the ultrasound hit some spots that felt like very deep bruises and there were a couple times that I would dearly have loved to hit her. But I didn’t. She sent me on my way telling me that the Dr would have the results by the afternoon. And they did.
PA called me with someone’s interpretation of the results. I also got the test results that were on My Chart (I really like that feature of Cleveland Clinic) and read through their interpretation. The PA assured me that my Gallbladder is not inflamed, infected and that I don’t have gallstones. I should keep taking the industrial strength Zantac, stay on a low fat diet (cause there’s nothing wrong so it is a given that I should stay on a bland diet) and follow up with my regular PCP in… oh… about 5 weeks now.
Funny… when I read the results of the test, it showed some accumulation of gallbladder sludge and what seems to be hepatic liver changes. Technically… it showed “increased hepatic echogenicity”… which seems to be (thank you reliable medical websites) frequently connected to high alcohol consumption (which… I don’t even get a glass of wine at the fancy dinners that work throws when we are on the road, even for the toast… I toast with ‘Coke-a-regular’ or ‘Coke-a-normal’ depending on the country so it isn’t that) or… (insert Daht-daht-da-dahhhhhhhhh) use of methotrexate.
So, I sent of a message to my rheumy to have her look and take everything into account and now I’m waiting to hear from her.
I don’t wait well.
Last night I had an ever so small panic attack. I took a long hot bath to try to convince myself that it’s all okay… and now I wait.
I’m not sure how to feel… but scared seems to be winning out this morning.
There has to be some kind of irony in the fact that I went because of the pain… and they found the sludge that is probably causing the pain… and I’m looking at maybe now catching MTX side effects reasonably early before there is too much damage… and what there is is likely reversible (no scarring yet).
And… the adventure continues…
Updated: September 24, 2014
Author: Figment of Fitness
Keep your dreams alive
It’s fall. Fall is what I have missed so incredibly badly for 14 years while I learned what I needed to learn in Texas. Texas has a lot that I will very much miss. Butterflies in December. Ladybugs in… well… December… My little boy who is very much not little any more.
But I was so homesick for October for so long… this weekend was something that I very much needed. I didn’t have to carry my backpack. I carried my work phone but I didn’t have to worry about it ringing (much, anyway). My whole weekend all I did was carry my electronics in my fanny pack and carry my camera.
We went to the Revenna Balloon A Fair. It was too windy for anything but a few of the burners to ignite. No balloons went up. But it was a nice festival and a really pretty day. Downtown Revenna the street was closed and stands lined the street. Music and dancing and amazing people watching. At the fair grounds, there was food and more music and thousands of people waiting to watch the balloon launch that never came.
After, we went to Canton to Factory of Terror. If you want a truly scary haunted house, I highly recommend it. Scared the crap out of me. They DON’T tell you “if you don’t touch them they won’t touch you”… for good reason. They touch you. And they have an electric fence fencer set up on the walls of one of the mazes so if you actually DO what they tell you to do (feel the walls to find your way) the walls bite.
This is not a fabulous thing for someone with RA… especially if your hands are being bitchy. By the time I got out of that house, my hands were screaming and I was nearly in tears. Good haunted house? Yeah. But there are some nasty surprises.
Today, we went to Cuyahoga National Park picture taking and walking through the fall. It was really a beautiful fall day today. I wish I could have captured the smell of the day. Everything was just perfect for fall. The trees are turning. The wildflowers are blooming. Tonight it is raining and it promises to get a bit chilly.
We stopped at a fall festival at an apple farm. We bought a scarecrow kit and stuffed him full of straw. He is sitting on our front porch watching the day seep out of the day. Apples, apple cider, apple butter and peaches.
I had plans of getting a good bit accomplished this weekend. Turned out that I really didn’t. But it was a golden weekend. A weekend to treasure.
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The Rules Thank the blogger who nominated you, linking back to their site. I would like to thank Sophie Chekruga… She’s adventuresome and inspirational and a very neat young lady. Put the award logo on your blog. Done Answer the … Continue reading
So… I’m trying to figure out the “it” that people are reacting to. My diagnosis… my situation… my life… This one is kind of tough. I’m sitting in the chilly (it was in the 40s Fahrenheit this morning) foggy morning … Continue reading
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.