Guest Post: A Mom Dealing With Rheumatoid Arthritis

This is my first of a monthly series of guest posters who will share their diseases and conditions and how they affect their lives. I met Alecia when we participated in a Mama Kat’s Writer’s Workshop when we discovered we had a lot in common. I will let Alecia tell you all about it.

The sun rises to greet a new day. My son, who is 5, comes in to wake me up for the day and is already asking if we can “go somewhere fun”. I rise up out of the bed; make my way downstairs, and then I do an assessment of my health. Does anything hurt? Am I fatigued still? I try to anticipate what might hurt as I go through the day and whether I can answer “yes” or “no” to my son’s request. This is my life as a Mom with Rheumatoid Arthritis.

I never expected the diagnosis of Rheumatoid Arthritis (RA) when I went to the doctor for the first time with pain in my hands, wrists, and knees. At first, I was told it was carpal tunnel. However, the pain would move around to other joints: shoulders, elbows, feet, and hips. My diagnosis came in January of 2013. I had already been experiencing pain on a daily basis and fatigue so the diagnosis just confirmed the reason. I couldn’t imagine at that time, how my job as a Mom would change due to my RA.

Rheumatoid Arthritis is an auto-immune disease where your body attacks your joints. It is different than osteoarthritis, which is due to age and wear and tear on the joints. There is no cure for Rheumatoid Arthritis and the progression of the disease can vary from person to person. Often times, looking at a person who has RA you wouldn’t be able to tell they are sick. Along with severe pain in the joints, which can move around from joint to joint, RA causes fatigue and oftentimes, the side effects of medicines can be harsh as well.

My daughter, who is 7, has said a lot that she “hates RA”. When I ask her why she hates RA, her response is always because it has kept me from taking them places and having fun with them. It is very hard to not be able to chaperone a particular field trip because of the amount of walking involved. To not be able to participate in Field Day like other parents because you are having a flare and need to rest. All of these things are hard for my children to understand. The words “no fair” and “I miss the old you”, tend to be said frequently to me by my children.

It has changed how I am as a Mother in that I have to limit what I do and what I can participate in. I may have to bail last minute on plans because I can’t keep my eyes open due to fatigue. It breaks my heart to not be able to do and go like I could before and to feel like I’m letting my children down. I should be holding my son’s hand when we walk through a parking lot to keep him safe. Instead, he holds my hand and arm so that he can “help” me get through the parking lot to the store when I’m having a rough day.

On a positive though, on the days when I am able, I do as much as I can to make memories and have fun with my children without overdoing it. I don’t want their entire childhood to be focused on their Mom’s RA. As they get older, I’m hoping they will understand a bit more but it is hard at this age to see your Mom hurting and battling this disease.

Life often puts us on detours that we didn’t expect; I’m learning how to enjoy the scenery on the latest detour in my life. I am Alecia and I’m a Mom to two children, 7 and 5, who loves to cook, create, learn, and see the beauty in life. I share my thoughts as well as my favorite recipes and crafts at Detours in Life – Enjoying the Scenery Along the Way.

akryworuka

The Loss of Mommy

Right around Christmas it happened.

“Mom?”

“Mom, I just got my highest score ever!”

MOM

MOM???

How did this happen?? Where would you learn such a word??

I called up Grant and told him Tyler was calling me “Mom”, and he said he was sorry. Then he got “Dad”.

Ever time Tyler calls me “Mom” I feel a pang of sadness. I can’t get used to it. I feel like I will never get used to it.

Tyler is still my baby, but now, I am “Mom”.

Where has Eeyore gone? The stuffed animal you used to take everywhere with you. The one you couldn’t fall asleep without. The one you would secretly hide in your backpack when you went to kindergarten.

“Mommy” and Eeyore are gone. For now I’m going to treasure that you still watch “Umi Zoomie” and still believe my kiss can make your boo boos feel better.

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Over-scheduled

Ah, those lazy days of summer…relaxing by the pool, sleeping in, the ice cream man…

Not at my house.

Grant and I said we were never going to do this but we have over-scheduled Tyler.

Next week he starts camp at the ‘Y’. Then on Thursdays he sees his counselor and has yoga. On Saturdays he has Reading Camp and on Sundays he has swimming lessons. At the end of July he takes a week off regular camp to go to Soccer Camp. Then there’s homework from the Reading Camp and from the Occupational Therapist plus a “Don’t Forget Everything You’ve Learned This Summer” packet from his teacher.

I am exhausted just writing this! How did this happen? Well, Tyler is a bit behind in reading and he does not enjoy it so we thought the reading camp would be a good idea, and he needs to learn how to swim; plus he loves soccer…He’s going to need Yoga just to relax from all the other activities.

In over-scheduling Tyler, I realize that I have over-scheduled myself as well. How am I supposed to get him to these things on time??? I am fighting depression again, along with my other health issues, and with that comes a feeling of being overwhelmed. What am I going to pack him for lunch every day? Will I remember the sunscreen? How will I handle the extra laundry of bathing suits and wet towels?

School was a breeze compared to what this summer will be!

Are you a chronically ill mom who finds summer challenging? Have you over-scheduled yourself?

Or maybe you are a well mom who feels overwhelmed too and it really doesn’t matter what your health is like.

Please tell me I am not the only one!

Photo courtesy of moneysavingmom.com

Photo courtesy of moneysavingmom.com

Monday Morning Mother’s Day Quarterback

A lot of mothers with chronic illness have enormous feelings of guilt that they cannot be “Super Mommy”. That instead of doing things with their children they have to nap. That they often end up just watching their children instead of participating with them.

In the days before Mother’s Day I wondered, “Is the way I parent my child worth celebrating?”

It doesn’t help that I am going through another depressive episode. It’s not the worse one I’ve ever been in but it is taking it’s toll on my daily activities and thought processes.

In my state I often wonder what to do with Tyler. It is difficult doing things with him so I have been taking him to the park. It gives me a chance to rest and watch Tyler play. Sometimes I talk to the other parents and grandparents there and it makes me feel even more inadequate than I already feel.

Yesterday Tyler was excited to give me his Mother’s Day gifts he made at school.

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The inside of the card read:

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In case you are not fluent in a kindergartener’s writing it says, “Dear Mom, Thank you for taking me to the park. You are a peacemaker. Love, Tyler”

I looked at what he had written in disbelief. One of the things that I had felt guilty about doing was one of the things he loved the most about me!

I think this can be a wake-up call for us all. Maybe our worst is not so bad. Maybe we are doing better than we think.

Maybe our children love us just the way we are.

Maybe we really do deserve Mother’s Day.

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Way to Get a Sweet Pair of Pants and Underwear!

Inspired by Mama Kat’s Writer’s Workshop.

3. What was the last thing you bought?

On Saturday, Tyler and I set out with two objectives:  To get an Advent Calendar (or a Countdown to Christmas Calendar) as it was December 1st, and to do some grocery shopping at Marc’s.  I figured that at the most we would be back in an hour and a half.  Just two places to go, right?  One thing in one store and some groceries.

We head to Target because they have an Advent Calendar for two dollars and that works for me.  Tyler asks if he could look at the toys.  I figure why not, we have nothing better to do and maybe this can give me some more ideas.  Luckily there is one more scooter to use, I say luckily because they only have two.  Just two for their huge store.  I get onto the scooter and we zoom to the toy department, with Tyler complaining that he has to walk and I get to ride.

We look at all the toys, including some for girls, as Tyler knows I like toys too, the girlie ones.  Strangers ask me if I know where things are such as the Angry Birds…I think…Wooden Board game.  I try to help the woman find this one Angry Birds game in the hundreds of Angry Birds toys.  I am getting so frustrated I ask her nicely why she doesn’t go on the internet to get her impossible to find Angry Bird game that her nephew wants?

After being in the toy department for an hour I tell Tyler that we are picking up the Advent Calendar and leaving.  “I’m hungry!”, Tyler wails.  Since it has now been more than an hour after the huge lunch Tyler ate, I know he once again must fuel his furnace.

We zoom to the snack bar.  I am able to walk in the snack bar and so I park my scooter right outside the snack bar.  “I want an ice pop!”, Tyler wails.  Knowing that an ice pop won’t do anything to fill him up, I bargain with him that he can have anything at the snack bar, except the ice pop.  Cookies?  Ice cream?  Yogurt?  Tyler isn’t buying it.  He sinks to the ground and starts crying.  Please know that Tyler is not throwing a temper tantrum.  The pediatrician has told me because he is so tall, thin and active that I need to feed him as much as he wants.  At least five snacks a day.  If not, he gets chest pains, stomach, cramps, his legs give out on him and he becomes tearful and irrational.

Knowing we are going to have a major meltdown soon, I tell Tyler that he can get the ice pop but he must eat something else too.  I don’t even have the money for one snack, let alone two but one has got to do what one has got to do.  Tyler chooses one of those chocolate chip cookie ice cream sandwiches, we get some tap water and sit down.

My eyes gaze over to my scooter and…it is gone!  Someone has stolen my sweet, sweet ride!  I feel as upset as if my car has been stolen.  I cannot believe it!  Of course, I know how desperate people are for scooters…but still I would never steal someone else’s!

While Tyler is eating he says, “Mommy, that girl is in my class, I know her!”

Of course he does.  Whether we have lived in New Jersey, Massachusetts or Ohio, Tyler always knows everyone.  No one ever comes over to me and says, “Emily, woo hoo, all right!  What are you doing at the county fair?”

The little girl is shyly looking over at Tyler. You know, like one of those, look, smile, blush and look away things?  I say, “Tyler, why don’t you go over to her and say hello?”

The little girl and her family sit next to us.  Tyler and the girl are sitting next to each other, the girl, blushing and embarrassed, and Tyler, oblivious.  He doesn’t need a girlfriend he has told me, even though most of his kindergarten class is hooked up.  I have told him he has made a wise decision and to concentrate on his kindergarten studies.

By now I have to pee like crazy.  I ask the little girl’s family if they would watch Tyler for a moment but Tyler says he’s got to go to the bathroom too.  Normally, I would assist him but I have to go so badly I just kind of wish him well and beat it into a stall.

As I am walking out to the sinks, I hear, “Mommy, I have bad news.”  I am not phased.  Tyler’s bad news can be that toilet paper has stuck to his shoe or that there is a bug crawling on the floor.

I look over at my son and his front pants look as though someone has dumped an entire bucket of water centering on his crotch!  “What happened, baby?  Didn’t make it on time?”  “No, mommy, I did.  I thought I was peeing in the toilet but it turns out I was peeing on my pants.” “Ah, yes, we’ve all done that before, do not worry.”  Meanwhile, my mind is going in so very many directions at once.

“Oh my God.  He needs clothes!  Wait, we are in Target, I can get him new pants and underwear.  Are you crazy?  You can’t afford that, just take him home, we are less than ten minutes from home!!”


“Okay, Tyler, let’s go home right now, we can change you and then we can come back and get the Advent Calendar and go grocery shopping.”
“Mommy, Anissa will see!  She can’t know that I peed in my pants!”

“Honey, she is in the snack bar, I will sneak you right out the door!”

Tyler is now moving up against a wall in the ladies’ bathroom, front side in.
“I’m not leaving the bathroom, everyone will know I peed my pants!!  Mommy PLEASE!”
“Holy crap, my choices are either scar my child for life by making him walk out the door of Target or buying him new pants and underwear!  I guess I am going for the new clothes.”


Only I cannot get Tyler out of the ladies’ room!  Who is going to watch him while I buy clothes for him?
I flag an Associate down who is so flummoxed he must call his manager.  The manager who looks about 18, says if I can just get Tyler into the men’s bathroom he will watch him until I can get the clothes.  I must trust that this teenager will not mistreat my son.
Tyler crawls along the wall from the ladies’ to the mens’.  “Little dude”, the manager says, “It’s cool, I am going to watch you while your mom gets you some clothes.”
Using a scooter right now is impossible I need to be…SUPER MOMMY!  I frantically run to the boy’s department.  Target for some strange reason has great prices on everything except when it comes to boys’ pants.  I finally find a pair of jeans on sale for 11 bucks.  Now, underwear.  I only need ONE but I must buy six. I go for The Justice League.  I head to the check-out and of course the lines are enormous.  I am getting more nervous with my son alone with that teenager.  I start asking people on the line, one buy one, if they would let me go ahead, my child has peed his pants, is hanging out in the men’s room, etc.  Ohioans are a friendly bunch and most let me go.  Only one says disgustedly to me, “Whatever!”

The pants and underwear cost me $22 and change.  Clothing tax is such a bitch!!

I get back to the men’s room and the teen and my son are having a fine time. I say, “Look what Mommy has got for you, Tyler!” and the manager says, “Sweet!” and I guess it is.

I struggle with dressing Tyler in the men’s room while the manager guards the door for us.  We walk out and head to the Christmas department.

Target is sold out of the Advent Calendar.

Photo Credit:  hitflix.com