We were eating dinner with Steve’s parents last month and I was telling them about my worsening Rheumatoid Arthritis. I showed them my fingers, especially the most troublesome one which is the right middle finger.
After I’d explained to Steve’s family what was going on I wrapped it all up by saying, “I guess I really don’t have any right to complain. There are so many other people who have it much worse than I do–people who are blind or deaf or have no use of their arms or legs.
Sarah, who had been listening intently to what I was saying, spoke up then and said, “Yes, some people are definitely in more pain than you (physically and/or mentally), but that doesn’t diminish the hardship you’re going through. It’s the same when people compare pain, as if trying to one-up each other: ‘Oh, you have a migraine? Well, I’ve had a concussion!”
She went on to say, “Mom, hardship isn’t a competition and just because other people have it worse doesn’t mean you are not dealing with a hard thing. It’s okay to feel bad about what you are going through.”
As always, I was amazed by Sarah’s hard-won wisdom. She has gone through more suffering than I could possibly imagine and has a definite inside track on dealing with pain and physical challenges. I was touched by her compassion and empathy and her reminder that it’s okay to grieve the loss of function in hands that can no longer easily do the things they used to.
In my last post I mentioned I was going to a hand surgeon in Raleigh. My rheumatologist had set up the appointment just to get a preliminary read on any possibility of surgery down the road.
After examination, the surgeon said that with the joint in question, replacement joint surgery would not be an option. The only thing that he could do (eventually) would be a joint fusion surgery but that would be only if the joint got to be extremely painful and/or the twist in the knuckle got a lot worse.
After our appointment, he sent me down the hall to PT and the therapist made a custom fitted, hard plastic splint that I wear at night to try to keep things from getting worse and even (hopefully) to nudge the finger back the other way.
I am also supposed to wear an ACE bandage on the finger as much as possible during the day to help dissipate the swelling and inflammation. This is what the well-dressed RA patient is wearing this season!
While I was waiting for the splint to be made, I happened to notice the decor on the shelves. Since the clinic deals largely with hand problems, those were definitely the perfect pieces to display.
Sarah and her roommate spent last weekend moving. Becca had been encouraged by her counselor to get an emotional support animal but since their roommate had bad allergies, the university arranged for them to move to a different dorm/apartment.
That means for Sarah’s last semester at college, she gets her own bedroom. Pretty exciting stuff for an introvert!
While Sarah was home for winter break, she attended the Wednesday class I teach. One of the class members just had a baby girl so Sarah had a chance to hone her baby-holding skills. It looks like Steve is in the middle of saying something witty. (Which he is wont to do.)
I even got to take a turn!
Had to show off the cool socks.
I know that many of deal with various illnesses and challenges.
If you’re comfortable sharing about it, I’d love to hear how you cope and get along with whatever that challenge is. It’s always nice to know we are not alone in the things we face.
.
I have severe neuropathy in my hands and feet from my chemotherapy for breast cancer. It is most likely permanent so I do the best I can to move forward and do the best I can with it.
Marylea,
1. Move forward. 2. Do your best.
Two very good pieces of advice.
I feel for you and your finger. My dad has arthritis in his fingers – his knuckles are huge. He has trouble buttoning shirts so we try to buy ones with snaps. I don’t really have any illnesses unless you call being overweight an illness.
I’m headed back to the Midwest Monday morning – should be home Wednesday some time, just in time for having a bone graft around a dental implant I have.
Phyllis,
Oooh. The very words “bone graft around a dental implant” gives me the shivers just writing about it! I know you will be glad to have that taken care of and behind you.
Happy and safe travels!
As a cat lover, I demand details of Sarah’s new roommate. ?
Ellen,
Since I don’t know much about Miss Kitty, I asked Sarah to respond. Here’s what she wrote:
We got Diana from The Catnip Cat Cafe which is located in Norfolk, VA. They typically have between 10-20 cats. All the cats are adoptable and they keep detailed paperwork on them, but people can just come and hang out with the cats to help keep them socialized as they await adoption. You can learn more about them here.
Diana is a black and white shorthair cat, is very sweet, and loves to cuddle. Bec named her after one of her favorite superheros, Wonder Woman. She’s also adapted very well; she’s only been here a week, but it feels like we’ve had her forever! She’s definitely been a wonderful addition to our lives.
In a world full of Tiggers and Simbas, Diana is a delightful name choice. ? We’re getting a cat cafe here in Raleigh/Durham in a couple weeks!
Ellen,
I had never heard of a cat cafe and had no idea that there was even more than one location.
It is SUCH a great idea; it would be nice to work at a place that has so many smiles per square foot!
That Sarah is so smart! You are blessed for sure. Listen to her and make sure you take care of yourself, too. As a Mom, I know it’s hard to think of yourself, but sometimes we need to.
I love Sarah’s new place. Those apartments just look so cozy and home-y. Very unlike a cold, brick walled room most dorms are. And I agree that kitties are very much little therapists. I have 2 and I know that they bring me much joy!
Have a great weekend!!
Krista,
Yes, I thought the apartment was lovely, too. I especially love the fact that they have kitchens so students can learn about cooking before they get out into the real world.
And to have a cute apartment with a cute cat? Win-win. 🙂
Becky, I am so sorry that you are having to deal with the horrors of RA. Thank you for including the photos of your hand so that we can actually see the impact of RA on your “quality of life.” As you know, I am a big “Sarah Fan,” and I would like to applaud her wisdom (and her eloquence of expression) regarding your right to express your feelings about your disability. Many adults lack Sarah’s perspective. A family member used to invariably address such issues with the observation, “Well, at least you have two good arms and two good legs.” (Ouch) Speaking of Sarah, I would like to offer my compliments on her BEAUTIFUL TUXEDO CAT! I love Tuxedo cats, and I have one who is soon-to-be 19 y/o and has gone to sleep every night on my (ever expanding) tummy for as many years. (Many of my Flickr and FB friends have Tuxedo cats.) It is not unusual for me to learn something about English usage from reading your blog. Today was no different, in that I learned the proper spelling of “wont”, in the context of Steve being wont to say something witty (instead of “want.”) As a “Grammar Nazi” with accompanying delusions of Grammar grandeur, it is always somewhat of a shock to learn that I have been misspelling/misusing a word my entire life! Finally, I must say that those Batman socks are way cool, but when he is ready, let’s get that child some certified “Pastor Steve Popcorn Socks!”
Fred,
Nineteen years old? And going to sleep with you every night of those 19 years? I can’t imagine the sweet friendship the two of you have developed. Animals are such steady, faithful companions. (And I write this with Summer tucked in snoozily beside my knee.) 🙂
The whole “at least you have two good arms and legs” comment is helpful on one level but very unhelpful on a bazillion other levels. I know people try to be helpful and cheery in the face of others’ hardships but often end up sharing unhelpfulness instead. I know they DO mean well!
And yes, I agree. That baby needs a pair popcorn socks!
I think acknowledging that you are in pain is ok. I grew up in a “no complaining” house and later found out I have a defective protein in my body that makes my joints unstable and painful. I thought I was just a wimp for letting “normal” things like joint pain bother me. Turns out that chronic pain in my ankle was a tearing ligament, the ache in my leg was a bone fracture, the pain in my jaw was part of the joint dislocating, the shooting pain in my shoulder was my arm slipping out of the socket.
Don’t try and tough everything out. I think there’s a happy medium between continually mourning the life or body you wish you had vs always telling yourself to suck it up. I’m slowly learning to let pain simply be one sensory input among many. It will always try to steal your attention, and I suppose it’s the lifelong journey of learning to acknowledge that pain is present without letting it consume you. I’m not there yet, but I’m working on it.
Robin,
It is obvious that your long-term suffering has made you insightful, wise and compassionate.
The thought of you growing up in frequent pain and not being allowed to complain makes my heart hurt even worse than my arthritic fingers. I am just glad that at some point in your life you found out that those temptations to complain were well warranted and well justified.
And complaining (or at least, talking about our pain) can definitely be therapeutic at times, although I think some people get stuck there and never have a life beyond their pain. What you said is so true, “It’s the lifelong journey of learning to acknowledge that pain is present without letting it consume you.”
So much wisdom in those words and in your comment as a whole. Thanks for taking the time to share your story.
Oh my goodness Becky. Your poor finger!! I really feel for you. I mean, yes it’s JUST a finger, as you say, but it’s a finger, which is in constant use and on the flip side is constantly getting banged about.
I hope you are not in too much pain. Chronic pain is very debilitating, stressful and exhausting. Even a ‘small’ pain. You know, there was a ‘quality of life’ study done regarding people who have cerebral palsy. What was found was that their happiness and how they viewed their quality of life did not depend on the level of their disability. That is, those who were the most disabled(wheelchair bound etc) were not necessarily the most unhappy. Conversely, those who were the least affected(could walk and talk, albeit with some limitations) were not necessarily the happiest or viewing their life in a positive way. What really mattered was whether or not they were in pain. Pain decided whether they saw themselves as having a good life. Nothing to do with the severity of their physical limitations. What I am trying to say here is do not minimize your pain and how it affects your mental state and physical self. It is a life defining variable that often gets overlooked and underestimated, no matter how ‘small’.
OK, off my soapbox LOL.
Lesley,
That is such an interesting study to read about.
It makes me think of Steve’s dad who is in constant pain at a pretty high level and how that has affected his quality of life. He is not a complainer but you can tell he doesn’t feel well. The way he powers through and keeps a good attitude, regardless, is such an inspiration to me.
At this point, my condition is more decreased function, rather than pain, although I am aware of discomfort throughout the day. I think my main issue is trying not to think too much about what is ahead, as far as further deformity and increased loss of function. My hands work well enough today–so today I will work with my hands!
Oh Becky— your finger looks so painful. I really feel for you!
Over the past 19 years since the car accident that changed my life and began my health issues I’ve developed a lot of coping strategies. Without these strategies I don’t think I could face the challenges I face. Here are some of them:
– I’m really big on rehabilitation – ie physical therapy, occupational therapy and a specialist with a high degree of knowledge of my condition, anatomy, and rehabilitation. Without my PT that has me regaining walking and my OTs who have given me wheelchairs I would be completely bed bound. Instead I have partial mobility and am slowly relearning to walk.
– Education of your condition and how it impacts your body especially is huge. I would strongly encourage anyone with a musculoskeletal condition including your RA to find a knowledgeable PT. years ago when I was a pt student I I did a practicum at a rehab hospital for patients with RA and other forms of arthritis. A multidisciplinary team educated patients on everything from nutrition for RA to pt exercises to water therapy to how to cope psychologically with the pain and body changes. Maybe you can find such a program at Duke or another hospital or your specialist can refer you to one. I’ve done similar programs for my condition.
– finding a way to create meaning, purpose and a way to contribute through my condition. I struggle a lot with pain and disability but one of the purposes I’ve created is to try educate people around me about disability awareness , accessibility, and the choice to live with peace, joy and wonder in the face of hardship.
In terms of contributing there are almost always ways to do so even if it’s not your first choice. For example I’d love to have a baby. I’d love to travel. I’d love to continue to be a paediatric pt. None of that is really posssible. But I can adopt older kids and youth from foster care, I can be a writer and editor and I can live as fully as I can in my home city.
– choose a balance of mourning what I’ve lost and what my life has become with also choosing joy and wonder.
– explore alternative treatments. Most are too out there for me but I have tried many ones that are science based and have a good chance of helping .
Choose to treat the pain as much as I can.
Choose to fill life with fun, friends and activities that distract me from the pain in and hardship. Choose my closest friends carefully.
Control what I can. For example I cannot control that I have this condition. However if I keep my weight from getting high it will only help me. If I got too heavy I could have a lot more trouble with mobility. So I go to the gym, even though I’m usually the only person using a wheelchair. And I try eat healthy (but make room for chocolate because I love it so much)
I’m thinking of you Becky!!
Becky you mentioned in a reply to another comment that it hurts to shake hands at church. One thing I also recommend is to become your own advocate. Speak up with a sweet gentle smile and tell people it hurts to shake hands and you can’t do it—but you are so glad to see them. Pat them on the shoulder or something. It is akward at first but then you get the hang of it. Think of how you would have advocated for Sarah if something hurt her as a little girl. And do that for yourself.
Jenna,
Yes, that is a good point to be my own advocate. Thankfully, it is not a problem with the majority of the people; there are just one or two I may have to speak to and ask them to be a bit more gentle.
Jenna,
This comment could easily be the basis for a great magazine article or even an entire book. It is obvious that you LIVE what you write and that you are not just spouting off platitudinal advice.
I think what has always inspired me the most about you is your attitude in the midst of hardship; that comes through loud and clear in what you wrote. No, you can’t control the fact that you have experienced loss but you CAN control how you respond to that loss–and you do that in an incredible way.
I also appreciate the fact that you are taking the time and effort to educate people on disabilities when it would be so much easier to just turn away and not get involved in sometimes difficult conversations. It takes strength and fortitude to engage strangers in conversations when they may or may not be courteous or kind.
When I think of facing challenges with dignity and joy, your face will always come to mind. Thank you for being an inspiration to me and to so many others by using the gifts you have to make a difference wherever you (and Lucie) go.
Your finger looks so painful. Mom had rheumatoid arthritis too. Was very painful and her hands were so misshapen, but she didn’t complain. Her only complaint would be after she had been to church and we shook hands, that it hurt so badly when they squeezed tightly. I sure hope the splint and wrap help you out. Happy Sarah gets her own room for the last semester. I’ve been pretty healthy til I had discovered I had a bad valve and had to have a valve replacement, but I have done wonderfully recovering. All thanks go the God for that and all the prayers.
Wendy,
I’m thankful your bad valve was discovered when it was. And even more thankful that you had a valve replacement and doing so well. Isn’t it amazing what doctors and medicine can do for us that was not possible 50 or a 100 years ago? Grateful to live in the generation I do.
I’m inspired by the fact that your mom was not a complainer. I know she has been a great inspiration to you.
So sorry about your finger but Sarah is right…don’t compare yourself to others. You are allowed to hurt. Don’t diminish the pain. Praying that the splint works for you.
And yeah for Sarah getting her own room! My daughter had her own room the last 3 1/2 years of college and she loved it. She would keep the door open at times, yet other times she would shut the world out. She had great room mates the first year but definitely loved having her own room.
Nicole,
Your daughter was blessed to have her own room for so long! It is wonderful to have the door closed/door open option because sometimes a person just doesn’t feel like being around a lot of people and noise. And for Sarah and her roommate–she is an early morning person and Bec is a night owl so it works out in that regard as well.
Thanks for encouragement over my situation to not diminish what I am going through. Sarah certainly had good advice.
Oh Becky, your finger does look painful. I hope the splint and ace bandage provide some relief! My “biggest” ailment is migraines, but fortunately they are usually controlled with Maxalt and Zofran. Sarah’s apartment looks very nice – and how nice for her to have her own room! But how is that cute little curly haired little girl about to graduate from college???? The cat is really cute, but I too am highly allergic to cats. It was very nice of the college to arrange for them to move. By the way, I received my Christmas card Saturday – thank you so very much!! And the Scooby stamp was so cute! I recently used the last of my Peanuts Christmas stash of stamps and was disappointed that the USPS did not have any more available to order. Have a wonderful week!!
Sue Ellen,
So glad your migraines are controllable with meds. The people I’ve known with migraines have said the pain can be incredible.
I didn’t know there were Peanuts stamps; fun! Steve picked out the Scooby stamps, which you probably already guessed.
And no, I can’t believe that curly headed girl is graduating!
Oh, my, your finger does look very painful, but I did understand what you were saying. There are so many who are worse off than we are, and I also understand what Sarah said. I probably have mentioned this before, but I have osteoarthritisin my wrists, especially my left one. The pain is not the same, sometimes like someone has taken my skin between their fingers and squeezed, and it makes me gasp, sometimes it’s an ache. Or like what I called as a kid “an Indian burn.” You take someone’s arm and twist in in different directions. I never know when the pain will come so have had to tell friends that if I make a face while talking to you, it’s because it snuck up on me. Hard to believe Sarah will be out of school in 4 months. Does she have somewhere already that she would like to be employed?
Sharyn,
That would definitely be alarming to not even know when your pain is going to hit. I’m glad your friends have the inside scoop on it and won’t worry if you suddenly grimace in their direction! What gets me is when people shake my hand too hard at church. Ouch!
Sarah doesn’t know yet what she will be doing after college; big decisions and big choices!
Hey Becky!
So you really want to know my ailment. Well it’s called fibromyalgia. I’m sure you have heard about it. When the nerve ending on your body make it hurt all over. I’m always in a great deal of pain at any given time. Can’t see it But sure do feel it. On my arms, rib cage, legs. All over really. When people hug me it hurts. So that’s my ailment. Thanks for letting me rant about it. Felt good.
Catherine
Catherine
Well, I’m glad you had a chance to rant! Everyone needs to do that occasionally.
Fibromyalgia is a tough, tough thing to deal with. It’s one thing to have pain in one area of the body (finger, neck, head) but to hurt all over is something else altogether. And especially sad when hugs hurt. Sending you heartfelt, virtual hugs today.
I don’t really have any illnesses or challenges worth mentioning in comparison to others. When I DO have something come up, I pray about it and then I get on with doing what I have to do to deal with it. Fortunately, nothing health-wise has been permanent so I have no complaints. I’ve been very blessed.
Your hand/fingers look so painful! I am so sorry that you hurt. I will continue to pray for you and for some relief and hopefully that cute little ace bandage and the splint will help.
Yay for Sarah and her own room (now that she is almost done with college) 🙂 Better late than never!
Those little batman socks are adorable but not as adorable as the sweet baby wearing them! <3
Lee Anne,
Sounds like you have had great health in your lifetime. A true blessing.
And yes, the socks AND the baby were beyond cute. 🙂
I had been very lucky to have been healthy most of my life, then at age 59, I had to have knee surgery, the following year I slipped on some liquid in the grocery store, fell, broke my hip and had to have a total hip replacement, then 5 months later was diagnosed with high sugar, high cholesterol, high blood pressure and the most painful part, psoriatic arthritis….I was prescribed Humira and it helped tremendously but it was 2200.00 per shot and I took it weekly, luckily our insurance company covered it completely, however, we had to change insurance companies and it is now not covered so I had to stop taking it….my pain I am sure Becky, is not as bad as yours, but there are some mornings it is tough to get out of bed and get moving, my husband has to open most jars for me etc., anyway, congratulations to Sarah on her new place, it looks great!!!
Dale,
That 59-60 year old age range was a treacherous one for you. You must have felt like you were getting slammed from all sides!
I’m so sorry insurance no longer covers your shots, especially since you were seeing such a benefit from them. My monthly infusion is around $5,000 which I, of course, couldn’t do without insurance so I am very grateful.
So many people take it for granted that they can just jump out of bed in the morning without a second thought but you and I both know that it can definitely be a challenge. Sending Manteo hugs your way. (And God bless your husband for nursing you after surgeries and opening your jars!)
Inspiring as always!
Thanks, honey!
What a cute cat ?
And what Sarah said is complety right
I have had my own battles with my mental health. My ‘drug’ has been self harm in various forms . Here is what I wrote on instagram
It has been many days since I cut. It has been three years since I made it that far and this week I will go longer than I ever had before.
The difference now from then is back then I never enjoyed my periods without cutting. All I felt was just feeling worse and more urges. I believe back then I still needed cutting to survive and cope . Now I just do not feel the need. I like seeing my body healed. I am better at coping with hard days in other ways.
This month it has been 4 years since I started cutting and yes it did help me back then. When I did not have words and was not able to cry.
If you had asked me three years ago I had never imagined a life without cutting. I did expect it to be for the rest of my life. So glad I was Wrong. I cannot say I will never relapse. And that is okay too. But for now it is good
Katrina,
“I like seeing my body healed.” That is one line that stuck out to me from your wrote. The other line that touched me was, “When I did not have words and was not able to cry.” (explaining the reason you cut.)
You really have a gift for expressing feelings that are hard to put into words; your journey toward healing and wholeness is truly inspiring.
I’m so thankful you chose to share your story, your pain and your day-to-day healing with your Smithellaneous family. God bless you on your journey.
I sure hate to see that finger. I am just so sad that you have to deal with this junk. I always admire your good attitude and non-whiney demeanor. You take after mom cause I see the same sweet-spiritedness in her despite all of her hardships.
I don’t have any major physical ailments for which I am ever so grateful. (I am somewhat messed up psychologically though and I believe a certain level of whining is therapeutic. ?)
As ever, I remain a fervent fan of the Smith family. Love you!
Deb
Deb,
Therapeutic whining is a wonderful thing to do. It really does help for all ailments both physical and psychological. 🙂
And on the non-whining front–Mom truly is an inspiration in the area of suffering with sweet-spiritedness and dignity. I wish I had MORE of her qualities!
Bill had a hip replacement in November and it has been a long recovery period, where I have to do about everything. Then I took a tumble on the stairs two weeks ago, which I am almost fully recovered from except for a sore rib. Then while I was napping last Monday Bill decided to take the trash out to the curb in tennis shoes over snow and ice, resulting in a fall. He had to crawl back to the house because he could not stand up. He received a wicked black eye along with a cut just below his eyebrow. I am sure he was very sore from the fall but will not admit to that. We are planning a trip to Florida in April to visit Chlorita on the gulf coast and then driving across to the east coast to see his kids. Hopefully we both can stay accident free until then!
Cindy,
Hip replacement, stair tumble and ice tripping. Ouch!
You guys need a LONG period of time with no mishaps. Happy traveling to sunny Florida in April; by then, you will be more than ready for it!
Very surprised June 21, 2017, when I was told I had invasive lobular breast cancer. Not knowing what was involved or what was ahead God gave me peace and comfort. I knew God was in control and as I went through the next eight weeks of MRIs, biopsies and other test (PET) He was with me each time even though the news was not what I wanted to hear. Tomorrow I have another PET and know God’s got this. I am claiming NEGATIVE results as before and good lab report. He holds our hand and has His loving arms around us. Prayers of friends help lift me up. I am so blessed. Prayers for you daily, Becky, as you make decisions and deal with the issues you are facing. So happy for Sarah.
Ann,
Yes, you have had any eventful 18 months, haven’t you? Even as I am typing these words I am praying for you as prepare for your PET scan today. With Sarah’s and my history, I know so well the feelings that surround you on a day like today.
Grace has brought you safe thus far . . .