May, 2015 | Inmyrheum

A simple trip to the store…

I am blessed to have friends who offer to shop for me. I love them. It still makes me feel guilty that I need people to shop for me. So, to assuage my guilt, let’s look at what it takes to go buy groceries.

1. Need to shower. This means getting upright, which often requires a pep talk. Let’s go. You can do this. It’s just getting up. You used to do it without even thinking about it. Stand up. Come on. That’s it. Good. NO, don’t sit back down. Good. Okay. Step 1 is complete.

2. Walk to shower. If the thought of this made me sit back down, we must go back to repeat Step 1. If not, give myself a little cheer, “yay for walking upright!”

3. Look in bathroom mirror to determine if I really need to wash my hair. Yup. ICK. Definitely need to wash my hair. Hey, while we’re on the topic, when’s the last time you cut or styled that mop?

4. Get into shower. Oh look there’s my shower chair. Best. Invention. Ever. Wait, am I really so pathetic that I can’t even stand for the time it takes me to shower? Good Lord, Woman, you are 50 not 90! I bet a lot of 90-year-olds don’t even sit in their showers. Shut up. I am sitting so I will have the energy to get through shopping. Sit. Wash. Feel pretty good.

5. I love my towel. It’s big. I mean really big. It’s soft. AND it’s purple. Mmmmm, it feels so good to be clean. Why do I make such a big deal about how much energy it takes to shower?

6. Walk back to bedroom and sit down. Figure out what is clean to wear.

7. Dry hair vigorously with towel. Less vigorously. Man… I feel… tired.

8. Go to sleep.

9. Wake up. WHAT TIME IS IT? I was supposed to go to the store! What is wrong with me? I can’t even get to the store to buy groceries???? Oh yeah, I’m sick.

10. Slowly get dressed. Bending over is usually painful. So do this with as little bending as possible. Do it seated, because if not, you may need another nap.

11. Walk downstairs and marvel at how messy your house is. Don’t those kids ever clean?

12. Do not stop to marvel or you may sit down, further delaying your trip to the store. Keep walking directly to the car. Do not pass go. Do not collect $200.

13. Park as close as possible (thank you handicapped parking). Get an electric cart because this will take more than 5 minutes.

14. Shop… talk to friends who are also shopping, unless it’s 2 AM and you are shopping because you didn’t wake up in time (see Step 9).

15. Load groceries into car.

16. Sit in car and marvel that you are now completely exhausted, again.

17. Drive home and park the car.

18. Honk and beg children to unload the car and put away the groceries, which they almost always do.

19. Go take a nap.

I remember when going to the store was done without thought… just hey, stop at the store and pick up a few groceries. That was nice, but that was life BD (before diagnosis).

Let’s not even talk about making dinner…

You don’t look sick…

I am laying in my bed right now wondering, am I sick with a bug or just Rheumatoid Disease sick? I can rarely be sure…

Rheumatoid Disease is an auto-immune disorder. (Huh?) This means that my immune system is not normal. I like to tell people my immune system is an overachiever. Normal immune systems only attack foreign invading bodies, like germs, diseases, things that are bad for you and going to hurt you. My immune system, like most overachievers, gets bored doing what everyone else is doing. So it does that, and does it quite well, but then it decides to do more. It attacks my healthy tissue, the stuff that makes up my body. This may be my cartilage in my knees, my organs, my eyesight… pretty much any part of me. These constant attacks cause the healthy tissues to become inflamed. All this inflammation leads to pain and further disability.

So, how do we get an overactive, overachiever immune system to stop attacking its host? We give it low doses of chemotherapy (miniscule compared to what they give cancer patients, but enough to make you nauseous and exhausted), biologics (which target specific proteins in our cells that seem to be working the wrong way), anti-inflammatories (prescription maximum doses of things like ibuprofen) to combat all the inflammation. This is in the hopes it will calm the heck down and stop doing so much, just act normal. Many of these drugs are by definition toxic. They have to be to knock down a busybody immune system. Since they are a bit toxic, they leave you feeling sick. If you feel sick often, how do you know if this is the disease making you sick, the cure making you sick or some germs making you sick…

Rheumatoid Disease also involves fatigue. This is feeling like most people feel the day after they have the flu. The problem is this is not for a day or two, but nearly every day. Every minute of every day. We learn to hide it in public. Put on a smile and just push past it. Most people I know with Rheumatoid Disease are pros at this. However, this often does not work in our favor as people tell us “you don’t look sick.” We just keep slogging through pain, exhaustion and overwhelm. Until we can’t any more. I call that “hitting the wall.” My kids know those key words. Everything we are doing stops. I must get home and get into bed. Even then, I am usually running a fever, may begin vomiting, often am like an over-tired baby who just can’t sleep. Seems like maybe I am sick…

You are feeling exhausted, running a fever and vomiting because you have just pushed yourself beyond your limit. Are you sick? Yes, yes, yes, I am sick. The big question is what kind of sick?

Last night, as I lay in bed, drenched in sweat with a fever and vomiting, the pain hit and it hit hard. I could tell you where every teeny tiny joint in my feet was located because it hurt. Each joint in my toes was aching. This is why I no longer use a top sheet. The pressure (what a few ounces maybe?) of the top sheet hurts my feet and ankles. I find positions to place my hands, wrists, ankles and feet while I am sleeping so that there is no extra pressure. It’s a very precise thing. The problem is when the pain hits like this, I am restless. No matter what position I find, in a few minutes I have to move. I toss and turn, groaning at the movement required. Lordy, if I have to get to the bathroom quickly it’s the fastest hobbling gollum-gait ever, accompanied by “ow, ow, ow!” After enough of that, I finally break down and take a pain pill. (Thank G-d for hydrocodone!)

Today, I feel better than I did (we had a storm, which often triggers the pain, and it’s passed). However, I am still wondering. Sick or just Rheumtoid Disease sick? No real way to know. Another friend I was with last evening got sick overnight. So maybe this time it is real sick… who knows? It really doesn’t matter in the long run. There are still kids to get places, things I have to do, things I want to do.

So, I’ll do what I usually do: rest as much as possible, push when I have to, medicated when I need to, and get on with living… living with Rheumatoid Disease. Huh, maybe I’m sick?

underachiever? Really???

Today’s post isn’t really about RD… just life.When I was a kid, it became a family joke that my report cards always said, “Lisa likes to socialize. She is not reaching her potential as a student.”

Now, I always got good grades. Maybe not straight A’s, but good grades just the same. I was on honor roll in high school and in college. I wasn’t National Honor Society, but I did just fine. So why did my teachers always write that? I suppose they wanted me to stop talking. But is that a realistic expectation of a smart, outgoing extrovert? I don’t know, but they are words that have haunted my existence.

I went to college, got 2 degrees and was working on a PhD when RD struck me down. I have had bosses as a professional, who I think felt just as those teachers did, “not working up to her potential.” I had a husband for 18 years who definitely had no problem letting me know in very unloving ways that he agreed with those teachers. I have told myself over and over again that I agree with those teachers. Now RD has me mostly home bound and often in my bed or recliner, exhausted most days and doing less than I ever have before. The words still hang there. Am I less than I should be? Will I die never having “reached my potential?”

I am pretty sure many of my friends and family agree with those teachers. They don’t understand the pain, the fatigue, the overwhelm I feel just doing the bit that I do every day. They ask me why I cancel plans, don’t answer the phone, don’t socialize any more. The girl my teachers wanted to stop talking, has finally stopped, but now that isn’t a good thing either. They have been overheard being very critical and judgmental. No job, no real income… so much potential just wasted. Believe me, it isn’t anything I haven’t thought myself.

Who can judge your potential? Only I know what I am capable of. My doctor tells me I push too hard and under-report my pain. My friends say, “Just push yourself a bit.” I go out, sometimes when I know I really shouldn’t (but the wedding was so much fun), and smile through my pain. My friends say “You don’t look sick; you look great.” Thanks but I feel like a bus hit me. Should I just start looking like that? My kids have seen me hit the wall, and melt into a crying, suffering pool of pain. They have seen me sleep 20 hours straight after I push much too hard (but I would do it all again for the bar mitzvah or to visit my Mom). I become very cranky, and probably hard to live with (another area where I have such potential). I pushed myself to work. My boss would say “Do you have to look like you are fighting to drag yourself in here?” Ummm, I am; can’t you just appreciate that? She wanted to fire me, but my professor knew. “I know you,” he said. “I know how hard you fight. I know you must be in so much pain.” That was our last conversation, when I told him I had to stop. Why don’t my family and friends know that? They have known me so much better and longer than he.

I am not feeling sorry for myself. This is the reality I live. It confuses me, as smart as I may be. I do what I can. Sometimes I do much more than I can. You see, in my world, I have been an overachiever. I have done many things, had many jobs, gave all of myself to my marriage. I wanted to be perfect. It took counseling for me to realize I don’t expect that from anyone else, only myself. It sometimes still hurts me when I have to face the fact that I am not now, neither have I ever been, nor will I ever be perfect. I am just me, human and fallible, hurt by the judgment of others, hurt by my own harsh judgment… just me. That’s who I am.

Words have a way of sticking… doesn’t live up to her potential. Even when they may not be true. So use your words gently. Try to be less judgmental, even of yourself. Be kind. Above all, just be kind. You see, that person may fighting demons you know nothing about. Putting on a smile because that’s all they know how to do.

32 times….

This morning my immune system decided to wake me up with a full-fledged allergy attack. I sneezed 32 times in a row. (Read with the sound of Mr. Rooney’s voice from Ferris Bueller’s Day Off) 32 times! Then my nose itched so badly I wished I could pull it off my face. Running around without a nose does not sound attractive though. So, I just rubbed and scratched and rubbed some more… for hours.

What causes allergies? A whacked-out immune system. The same whacked-out immune system that makes me swell up and hurt with Rheumatoid Disease. So I think it’s time for a smack down…

“Now listen here immune system, you need to just calm the heck down. You are freaking out over minor things, and you need to stop this instant. I am not going to die from pollen. I know you are trying to keep me safe and healthy, but you are paranoid and delusional. Pollen is a normal part of living on Earth. It makes flowers grow, and then the bees can collect it and make honey. We like honey. Honey has many good, natural antibiotic properties. It’s sweet and tastes great. Tree pollen leads to new trees. Trees create oxygen and clean up carbon monoxide. We like trees. They give the birdies and squirrels a nice spot to live. So stop it with the over-reaction to pollen.

Now, while I have you here, we need to talk about this Rheumatoid Disease junk that you’re involved in. Is this the result of peer pressure? Just because all your friends are doing it doesn’t mean you should too. I mean if all your friends jumped off a bridge, would you? Yeah, you probably would. Alright, listen up. This RD stuff is not okay with me. Do you hear me?

Are you even listening to me?

Stop making my knees hurt and listen up. You are grounded until you get yourself under control. I know I have high expectations, but this behavior is just not acceptable. Every little thing is not out to kill me. You don’t have to be so overprotective. Calm down! Maybe you could enroll in a yoga class or do some meditation. I want you to take this time to take a good hard look at what you are doing and all the negative consequences your excessive behavior has created.

I’m glad we had this little talk today. Now go and do better… er, do less… I mean just behave yourself, okay?”

Maybe it needs a therapist? Is it smoking crack? It just never listens…

Footprints on my heart…

Lately I have not felt that I have had anything to say that would be of interest to others. I have not posted for quite some time. When I came today and saw comments that were so kind, it got me thinking. I have told my friends and myself that we never can really know whose lives we have touched or how. We go around and live our lives, make our own decisions, but everything is like a pebble in the water, our ripples never ending. Somehow though, I seem to forget that… I’ll try to give myself more credit. Thank you for reminding me.

When I was young (many moons ago), there was a popular quotation that went like this: “Some people come into our lives and quickly go. Some people move our souls to dance. They awaken us to a new understanding with the passing whisper of their wisdom. Some people make the sky more beautiful to gaze upon. They stay in our lives for awhile, leave footprints on our hearts, and we are never, ever the same.” It’s by Flavia Weedn, a person I’ve never met and whose name sounds straight out of Harry Potter to me. Over the years, I’ve seen the truth of these words.

I am blessed to live in a community that extends me care in many large and small ways. I have people in my life that have helped me through so much. Old friends and new, who often have no idea how much their presence has influenced me. I have teachers, co-workers (before I got sick) and acquaintances who have all changed me.

I catch myself sometimes, feeling sorry for myself or doubting myself. I think how lucky my married friends are to have someone who really cares how their day has gone or if the kids remembered Mother’s Day (they are only kids and even though I reminded them, I refuse to take it personally that they still forgot, and I will keep repeating that until I believe it). I wonder why G-d has not brought me that kind of love. Until I remember, I am surrounded by love. Every person who has said or thought kind things about me, every person who made or bought me a meal, every person who has said a prayer for me… this IS that kind of love, even though it isn’t embodied in someone to sleep next to or hold my hand (gently because those joints are so sore all the time). My kids were created in love and truly were answers to my prayers, even if they can’t seem to remember one day a year (okay, two, I also demand attention on my birthday).

RA generally sucks, but I can say it has given me blessings, too. I have time to notice the sunrise (as I am awake from pain-somnia). I have time to smell the flowers, even if I can’t get on my knees any more to plant them. I have compassion for the pain of others, emotional or physical. All pain is hard. Every day I laugh and find things to smile about. Life is good. Life is special.

Thanks for coming and reading what I have to say. I will try to be more aware that each word touches others and leaves a tiny footprint behind.