Tagged with Rheumatoid Arthritis

When I Look in the Mirror…

This is my first time posting with Finish the Sentence Friday. If you would like to link up or check it out you can do so here.

Today’s prompt is “When I Look in the Mirror…”

My first thought is …I see nothing good. Before I became chronically ill with conditions such as Lupus and depression, I though nothing of doing my hair and makeup every day, for work and the weekends. I never thought of going anywhere without doing myself up and I was pleased with my reflection.

Then I became sick and doing my hair, blowdrying it or curling it, became too painful. I could no longer stand up to do my makeup. Eventually I just didn’t bother any more. I was always clean, but could no longer improve my appearance. I wonder now where pretty went to.

I’ve been suffering from depression for a long time and it is both mentally and physically exhausting. I still do not have the energy to do my hair, going outside with it wet even in the winter. Because I have not blown it dry my hair frizzes up and I hate it.

I also see a double chin or two when I look in the mirror. I have gained 50 pounds from the psychiatric medications I am taking. I have lost some of the weight but still hate how fat my face looks.

When I look into the mirror I see someone who is mentally ill. I feel like I stand out in the crowd, like you could pick me out and tell I am sick. I feel like I don’t belong.

There are some things that do make me feel better about myself. I do color and cut my hair on a regular basis at a salon which also does my makeup for free. I feel like I look good every couple of months or so! And I also joined a Facebook group called “Pretty Sick”, which is a group that believes that just because you are sick doesn’t mean you have to look it. Now when I go out I make sure I put on lip gloss, that is easy enough to do.

What do you see when you look in the mirror?

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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.

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Thinking About Canceling My Appointment, What Do You Think?

Last month I was having extreme fatigue. The kind where if you could even make it to a shower, that would be your only “event” of the day, you were done. Where it hurt to life your arm. Where you can’t get off the couch and you just have to let your laundry pile up and the house get messy.

I went to another doctor in my regular doctor’s group since she couldn’t fit me in. She was convinced I had Mono and tested me, along with my thyroid. Everything came out normal but the extreme fatigue was still there.

There’s been an avenue in my odyssey of illnesses that I have not explored, although many people have urged me to and that is Lyme Disease. Lyme Disease can often be misdiagnosed as Rheumatoid Arthritis, Lupus or Fibromyalgia and of course I have all three.

About 12 years ago, I did test positive for Lyme and my doctor wanted to start me on the short course of antibiotics that can be effective if the disease is caught early. I wanted a second opinion so I saw an Infectious Disease Specialist. She told me that I tested negative, that I was not sick, nor did I look sick. About six month later, the pain in my feet started on what was to be a lifelong journey.

Looking back with the knowledge that I have gained from being a professional patient, I wonder why the Infectious Disease Specialist didn’t give me a third, and deciding test. I also now think, “What really would have been the harm in taking the antibiotics?”

When I saw my Primary Care Physician to tell her I was still fatigued, I mentioned Lyme Disease to her.

“Did you ever have a bullseye rash?”, she asked. I told her I had never noticed one and she said she never tests anyone without a bullseye rash. Which is a little scary because many people do not present with the rash or, if they are bitten on their scalp, never see it.

After speaking with a good friend in the “Lyme Community”, I was given a referral of a “Lyme Literate” doctor. He was a Rheumatologist who noted Lyme as one of his specialities and was used to dealing with people who had Lupus and Rheumatoid Arthritis too.

But making an appointment with him proved to be a challenge. When you schedule an appointment with any Cleveland Clinic doctor, you are sent to central scheduling. The woman scheduling me asked why I wanted to see the doctor.

“Because I am having symptoms of Lyme Disease.”

“Have you been diagnosed with Lyme Disease?”

“Well…no.”

“You cannot see the doctor unless you are positive for Lyme Disease.”

“But the doctor is the one who will make the diagnosis of Lyme Disease!”

I hung up with no appointment made, with ideas running through my head.

I could say I want to see him for Lupus and when the scheduler asked if I had a Lupus diagnosis I could say yes, and get in that way. Once I was in I doubted they would throw me out for lying.

A few days later I saw the doctor who tested me for Mono again because I was having Costochondritis symptoms and explained to her my difficulty. She very nicely asked her office to schedule me an appointment and I was in, on February 21st!

So of course, just like the car who doesn’t make the weird sound when you take it to the mechanic, my extreme fatigue has gone away.

Having no symptoms of Lyme or anything now, I feel it would be very difficult to get this doctor to test me for Lyme. I don’t want to look ridiculous.

So I’m seriously considering canceling my appointment. I waited a long time for it but right now I do not consider myself physically ill and feel this would be a waste of money and time for both of us.

What would you do? Would you see a new doctor without any symptoms?

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Lovely In Her Bones

I have been dealing with either Osteopenia or Osteoporosis for four years now. When I had my first bone density test I was classified as having Osteopenia. Despite calcium supplements, my next test (two years later because insurance won’t pay for having it done sooner) revealed Osteoporosis. I was told I couldn’t go on drugs like Boniva or Fosamax because they were only for post-menopausal women and I was getting my period regularly, and still am.

Yesterday I went for another bone density test. It’s a quick test but I got a little suspicious when the tech wanted a more detailed shot of my left hip…and didn’t do my right hip. I asked her when I would hear back from my primary doctor about the results and she said probably within the week.

A couple of hours later I had an email from my doctor.

“Your bone density is BELOW THE EXPECTED RANGE FOR AGE. I recommend that we establish with our endocrinologist, to see if you need medication at this point or not…”

I called the endocrinologist and my appointment is for August 8th.

WHAT AM I SUPPOSED TO DO IN THE MEANTIME?!

Exactly how brittle are my bones? Am I in immediate danger of breaking a hip? Do I have the bones of a 70 year old woman? An 80 year old? Why is this happening to me at the ripe old age of 43?

I can’t pull myself away from the internet. I learned that my diseases: Rheumatoid Arthritis, Lupus, Ulcerative Colitis and even Depression can contribute to low bone density.

So can Leukemia, Lymphoma and cancer of the bone marrow.

I can’t believe I have to wait nearly two more months for my appointment.

This reminds me of the time a radiologist told me I could have breast cancer based on my mammography. I was told to make an appointment with a breast specialist and I got one..two months later. The spot on my mammography was deemed an old cyst by the specialist, but I spent an agonizing eight weeks in limbo.

Has this ever happened to you?

How did you get through the waiting period?

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Forgetting Everything I Knew

I read Expecting Adam as a member of the From Left to Write book club.  I was given a free copy of this book. This post is inspired by the book.

Welcome to all of my fellow book club members or anyone coming here for the first time!  I am a chronically ill mom married to a chronically ill man and we are raising our five-year-old son, who also has some special needs. My blog focuses on the challenges parents with chronic illness face, but also speaks about being a mom and a woman in general. )

In Expecting Adam by Martha Beck, Martha and her husband must let go of all they have learned from their Harvard education and open their hearts and minds when they learn that Martha is five month’s pregnant with a baby with Down Syndrome.  Martha especially must face judgements from the Harvard academia and even her doctors when they are shocked to learn that she has decided to keep the baby.  Along the way, Martha discovers a way of living and thinking about a life that not only can be just as good, but is even more rewarding than she could ever imagine.

Before being diagnosed with Rheumatoid Arthritis (RA) in 2003 at the age of 33 I, while no Harvard graduate, had always excelled in everything I did.  In 2000 I had decided to give up my on-air radio personality career and go in a completely new direction, taking a job with no experience necessary, in order to train as a Recruiter.  I enjoyed the business, learning everything I could about recruiting and of the niche I was recruiting in.  In a couple of years my position changed to where I reported directly into the President.

Two months after I got married I felt the first pain of what would wind up being the rest of my life, ironically while I was on the treadmill in the gym.  It took me six months to get a diagnosis of RA, in between which my feet were swelling so badly I would have to take ice packs to work and even on business trips.  I worked in this manner for a few years, sometimes just being at my job numb from so many pain killers.  I tried to never miss a day, even if that meant vomiting in the morning and then getting ready for work.

In 2005, I appeared to be in remission, and feeling that I was in the best health that I would ever be in, my husband and I decided to try to conceive, which we were successful at on the first try.  My pregnancy went very well from a Rheumatological standpoint and I continued to do well until my son was about a year old.  My pain started to increase by the day, my hands swelling.  I would fall asleep driving to and from work, I was lucky I didn’t kill myself or anyone.  I was swallowing narcotics two at a time just so I could feel some relief from the pain. But I was a full-time working mother and I thought it was just my 6 a.m. to 11 p.m. hours of being a mommy and working.

Through the five years I had been working with my diagnosis, and with the help of the internet, I had seen hundreds, even thousands leave their full-time jobs.  That was unthinkable to me.  I was the main breadwinner in the family.  We were going to buy a home, help our son with college.  Not working was just not possible, not in the way I wanted to live my life.

In 2008 I worsened.  At the same time, my satellite office of the new job I had been at for a year was closing and I was laid off in March.  In July I got my diagnosis of “Lupus with RA overlap”.

I never went back to work.

And I lost everything.

My 401K, my son’s college fund, my credit rating.  In fact, this month the woman with a credit rating in the high 800s is filing for bankruptcy.

I always used to think “those people” with chronic illness who stopped working were just not as strong as I was, that my will was mightier than theirs.  That their families did not depend on their salary the way mine did.

Turns out I was wrong.  It wasn’t that I wasn’t any better than those who had just “given up”.

I just hadn’t become sick enough yet to the point where my body said, “This is it.  I am not going to do this any more for you.  I just can’t do it any more and I won’t.”

People wonder what I do all day, especially while my son is in school.  What I do all day is…be in pain…have trouble walking…thinking…sleep and rest.  I go to doctors, I apply for disability which is akin to writing one’s dissertation.  I wait, so far for over two years to see if the United States government decides to declare me disabled.  I file paper work for WIC and Food Stamps, things I never dreamed my family would be on.  I advocate for myself and for those like me.

At 42 years old, this certainly isn’t the life I thought I would be leading.  But with the pain, with the worry of living under the poverty line, there is also joy.

I get to spend more time with my child than most working mothers do.  I am home when he comes home from school and I am always there to watch my child walk in the Halloween parade or to partake in the Mother’s Day tea.

I get to write.  Something I never knew I wanted to do and something that I never knew I could.  Was my brain so full of thinking about work that there was no time to let my creative side be free?  Would I have ever even become a blogger if I had not become disabled?

And finally, I get to make a difference in people’s lives.  For those mothers who are sick like I am and for those who are mothers of special needs children.  For those who are mentally ill and need a voice.

Life certainly did not work out the way I planned it, but it is certainly not all bad.