Advantages of Being a Rheum Mom

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One advantage of being a Rheum Mom is that it slows you down. I know that some of you might think this sounds ridiculous — how much am I missing out on by not being able to move as freely as I’d like? For me, this is the blessing I have found in this curse of systemic Rheumatoid Arthritis.

I am naturally a busy worker bee. Once I got into college and discovered the world of knowledge, I couldn’t stop myself from learning and experiencing as much as I could. I moved so fast as I was running past having real experiences, establishing real relationships, really living.

I came to a crashing halt when I was 22, when my symptoms overcame me and took me out of commission for several months. It was devastating at the time. Ultimately, I had to learn to find balance, how to talk to people again, how to just sit and experience life.

This has really come in handy now that I have children. I could feel my workaholism threaten quality time with my family. Since I had learned to slow down due to my RA, I was able to separate the need to work and the need to spend time with my children, who have grown more rapidly than I can stand. RA has made me a better mom.

My younger daughter, Rose, is all girl. She loves to do hair and play spa. This particularly works well on the days when I really can’t do much else except sit. Here is Rose giving me a pedicure — something I would not have been able to do for her that day. She is a wonderfully caring child, and she has done an amazing job, at the age of 5, of taking care of her mom, even when she thinks we are just playing games. I have been greatly blessed.

Family Survival: We Survived My Back Surgery!

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Four weeks ago, I had a major back surgery completed. This surgery was long overdue. After two misdiagnoses for my severe right leg pain, my rheumatologist did a back x-ray last August. Her response? “Ooooh. I would call this severe. You’re going to need back surgery!” That was not what I wanted to hear. Despite all my bad joints, I had planned to go to my grave without any scars on my body.
Over the fall, I went through all of the non-surgical methods to improve the nearly debilitating pain in my leg and resolve my back spasms. After my MRI, the physical therapist hinted that surgery was going to be the only option. For a physical therapist to say that, I knew I was going to have to accept it. I had one spinal disc herniated, and another that was completely out and sitting on my nerve. The nerve that makes the front of my leg go was so compressed, it was a miracle that I was walking at all. We made it official in January, however, a nasty RA flare prevented me from getting the surgery until July. By then, I was in constant pain and walking with a cane.
Besides my own concerns about having a major, not-exactly-routine surgery on my back and a year-long recovery, but preparing my family for what was ahead. The problems included:
Husband: He would have to do ALL the housework for a year after my surgery. Now, he was already doing most of the housework due to my RA. However, I was able to pitch in once in a while, and I did the laundry and grocery shopping – two things that require planning and organization – my husband’s Achilles heel.
Scarlett: My eight-year-old plays it cool most of the time. She really didn’t seem to have much concern over my surgery. She did admit to being “embarrassed” that her mother was using a cane, and she bemoaned missing out on activities because of my limitations. I discovered, however, that she was deeply concerned about me dying during surgery, which was not something I knew how to handle.
Rose: My baby Rosie (she is five, but still my baby) is a big-time momma’s girl. She was freaked out from the beginning that: (1) they would be cutting my bones up; (2) I would be in the hospital for several days; and (3) she wouldn’t be able to cuddle with me after surgery due to my pain.
My surgery was on July 11. While I was concerned about my own health and recovery, I nervously anticipated what kind of chaos I was in for as I recovered. One week after surgery, however, I realized that the chaos was not nearly what I expected, and that we had succeeded: we had, as a family unit, survived my surgery! It was hard to believe that within one week, we had gotten back into our normal rhythm and were functioning like a “normal” family unit (as normal as we get, anyway).
Here is what we did to survive:
1. My mom stayed with us the first two weeks. My surgeon actually requested that I have an adult with me 24-7 for the first two weeks after surgery in case I were to fall. I am not allowed to bend, twist, or lift anything for three months after surgery, and having someone around the first two weeks is likely to reduce the chance of the patient fending for themselves. I am fiercely independent, so I had to try not to laugh when my surgeon gave me those instructions. But I did give in, because I knew he was right, and because my mom has been begging to mother me ever since I moved out. She had four children, and didn’t handle empty nesting so well. I am her only daughter, so it was especially hard on her when I moved out and didn’t need her anymore.
2. My husband took on the laundry and groceries, even when my mom was there. My mom did help him with the laundry, so it was a nice way to ease him in to the massive amount of work it is. He is still really stressed out about it, but he now has a routine and just focuses on busting it out each weekend.
3. We stocked up on groceries prior to my surgery. We have two tables and a deep-freeze full of our regular food items. Most of our grocery shopping is sending the kids down to the basement to fetch certain items we have run out of. My husband only had to go out for produce and other perishables. He did have to do one major shopping trip last week, and he completely failed. I can’t even describe to you the level of failure. He has been officially “fired” from grocery duty now that I can drive. Rose and I go out to get the small items, and he only needs to get heavy items.
4. I took Scarlett out one-on-one and was able to bring up her fears about the “what ifs” that could happen with my surgery. I explained that Dad and I had a plan on what to do if either of us died. If I were to die, Dad was to have her aunt help raise them, because she is like me and would raise my girls the same way I would. She was relieved to hear that; she is right that her dad doesn’t know much about girlie stuff.
5. Rose and I listed the things she could do when she missed me or was scared while I was in the hospital. She did a fantastic job coming up with ideas – a front and back page that we hung in her room (pictured).
6. I recorded “I love you” messages on my girls’ iPads.
7. I wrote down our regular family schedule for my mom. Scarlett went to summer camp during the day, which helped keep things in order most of the day, so that by the time there were two kids in the house, my husband was home.
8. I got out of the hospital asap – even though I was in terrible pain and could barely move, I knew I would be better at home where I was in more control. I was actually able to get up and move things forward in our household, and by the end of the week I was up to doing my normal “momming.”
Overall, I think I expected the worse, but things just weren’t that bad. While I struggled at first, being in my home made it easier to recover. It was especially helpful to have my mom or the kids fetch me things when I needed it. And, I think my body just recovered quickly. I don’t have much faith in my body at this point, and I had been in so much pain for such a long time, my post-op condition was actually an improvement.
I hope this blog will help other rheum-parents think more positively as they go through the ups and downs of a chronic health condition. If my family can survive, yours can too!

Missing My Holiday :(

The Fourth of July has long been one of my favorite holidays (sharing Halloween as a top contender).  When I was a child, I often spent the summer with my grandparents.  The Fourth was always an exciting time when all of the family came together.  There was a cookout, family volleyball and badminton games, fresh veggies from the garden and sparklers. Then everyone would cram into as few vehicles as possible to see stay up late and see the fireworks.

As a single adult, I would get together with friends or borrow my nieces to have an excuse to share the excitement of the downtown fireworks.  As a mother, the event has expanded to all of the local events that are held over the weekend.  At a minimum, we go to the Fourth of July parade, actually held on the every Fourth in my community.  It is held early enough in the day before it gets too hot, and my kids love the floats and the candy.  This event is followed by many others surrounding the fireworks viewing location, and we can pick-and-choose what we want to do and when. 

This will be my first year in which I have not gotten to partake in the festivities.  Because I am flaring, I had already turned down get-together invitations as I knew I would be too exhausted to meaningfully participate and still keep my kiddoes somewhat corralled.  We had, however, planned on going to the parade and the fireworks, up until: rain.

The problem is not the weather itself.  It is raining off and on today, but we are not getting inundated as some other areas of the country are.  If I weren’t actively flared up, I would just keep some ponchos and stadium umbrellas on hand and we’d be set.  The problem is how my RA reacts with the weather.

In general, my body cannot handle being exposed to extreme weather.  And by “extreme,” I mean anything outside what most would consider mild.  If it is a sunny day in the seventies, I can do outside activities, as long as I am not sitting in the direct sun.  If it is hotter, colder, raining, snowing, or even just windy, my body begins to stiffen up and I need to go into the house.  I have never been an outdoorsy person, so this is something I have adapted to over the years.  This is the first time that I have felt that I am really missing out on something I really wanted to do.  As you will learn as you follow me, I am a pretty strong-willed person and missing out is not typically in my vocabulary.

How to fix this?  I don’t really know.  My body just won’t go and I know my limits at this point.

I did get a power scooter this year to help me with this problem.  I will discuss the long road it took me to accept needing the chair and then the chaos of actually obtaining it in another blog.  The chair does an amazing job at reducing the fatigue associated with moving joints that don’t want to move.  Unfortunately for today: rain.  I cannot have the power chair in the rain.  And, despite living in a pretty well-equipped community, there is no place at the parade or the fireworks for me to shelter the chair away from pounding rain and off the soggy earth.  I have learned that “handicapped accessible” is not always doable.  Again, a topic for another blog.

The good news is that someone in my neighborhood decided to have a kids bike parade.  This idea was probably taken from the community parade, which allows kids to ride the five miles on their bikes (which is just too big a feat for most of the younger kiddoes).  My kids will be decorating their bikes and spending time with the neighborhood kids in what will probably be a memorable event for them, even if it is not as grand as a large community parade or fireworks.  My children have had very full lives despite my disability, and so far, have not complained when we do miss out on some things. 

How I Became a Rheum Mom

Eight years ago today, I became a Rheum Mom.  Well, not exactly.  I did become a mother to my older daughter, Scarlett, who has grown into one of the most amazing people I know.  My RA, however, had been in remission for about four years, and I had been off all medications for two years by the time I first held my beautiful babe.

Four months later, I began to feel the heaviness in my joints and fatigue that is unique to new parent fatigue.  It began to affect my work and my ability to mom.  I begrudgingly trekked to my Rheumatologist’s office and restarted Celebrex and the hated methotrexate.

At this point of my life, I didn’t call this disease “my RA.”  In fact, I rejected it.  I knew enough to listen to my body and balance my activity and rest, but I did not want to identify myself by this disease.   No matter how head-strong and optimistic I was, however, my body had different plans.

Despite feeling somewhat better on maintenance medication, my symptoms continued.  My rheumatologist explained that I had probably moved from the “flare and remission cycling” form of RA to my symptoms now being a chronic condition.  These symptoms could stabilize, but would more likely increase over time, which meant my abilities would decrease over time.  That was not what I wanted to hear.  And, as stubborn as I am, I attempted every alternative approach to managing the condition.  Nothing worked.  By the time Scarlett had her first birthday, I could not carry her up a half flight of stairs in our split level home.

Up until that point, I had declined my doctor’s advice to begin biologics.  The biologic medications had scary side effects and I just wasn’t ready to get that serious about a disease I still did not accept.  But I had to draw the line when it came to taking care of my child.

About six months after I started biologics, the unthinkable happened – I got pregnant.  I had already resolved not to have any more children – it was challenging enough to take care of the one I had.  To make this a double whammy, I was on a pretty high dose of methotrexate when I got pregnant, meaning there was a high risk of miscarriage or birth defects.  That pregnancy was a nightmare.  Not only was I in constant fear for the child growing inside me, but I had active disease my entire pregnancy, and had a major bout of depression to top it off.

My little Rose was born perfect – and has been a major blessing in my life.  Sometimes I wish I had named her “Joy,” because that is what she has been.  What hasn’t been joyous is the progress of my RA since she has been born.  I was back on medications a week after she was born, and at four months I had such a bad flare I was nearly incapacitated.  I will describe the nightmare of that situation in a future blog.

That experience is what changed my life more than anything.  I had to face the fact that I had a chronic, progressively disabling condition.  This condition would affect my ability to be a mom, no matter how strong or optimistic I was.  This is when I had to think about how to talk to my kids about my limitations, how I would have to change my plans to be mother of the year, how I had to learn to feel blessed with every experience I do have with them.  This is when I officially became a “Rheum Mom,” and I have been learning on this path ever since.

 

Welcome to my blog!

When I first be came a mother nearly eight years ago, I spent many hours in search of resources for parents who have Rheumatoid Arthritis or other chronic, disabling disorders.  While I found plenty of blogs on the subject, I found little on how to manage being a parent while struggling with chronic illness.  This blog will do just that!  I hope to provide a resource to others in a similar situation, and build a community to support each other.