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Painful Patches: Rheumatoid Arthritis – My First Rheumatology Appt

March 19, 2017
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If you want to start at the beginning of my RA journey, click here.

Once I received the referral from my family doctor, it was three months before I could see the rheumatologist for the first time. My husband was out of town so I had my friend Margaret go with me.

Honestly, I had the appointment built up in my mind. The office is an hour (YES, an hour) from my house so I had not gone by the building before my appoinment. Honestly, it was anti-clammatic. I am not sure what I expected; it was just a regular doctor’s office.

There was a lot of paperwork to fill out ahead of time, but my rheumatologist came in and went over every piece of my history with me. We talked about the swan-neck deformed pinkies, the scleritis, the chronic tendonitis, the fatigue, the pains in my feet. She mentioned my positive CCP and said she was rerunning all of my labs.

The doctor and I laughed over my home remedy for my aching ring finger. (Sorry for the tacky nail polish. This picture was taken a few weeks before my first appointment. I texted this picture to my husband after I “invented” this advanced bracing system.) All giggles aside, the post-it kept my joint stable so it didn’t hurt. 

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She had x-rays taken of my hands and feet. At the end, we discussed treatment options: 10 mg of prednisone daily and 10 mg of Methotrexate once a week.

The doctor never said, “Yes, you have RA.” so my friend and I had differing ideas about the appointment. I took it as yes, I had it. In my mind, she did X-rays and told me how she was going to treat it. My friend took it as she was rerunning the tests and she would call me if it was positive.

I think this is important to note because it is frequently recommended that you take another person along to important appointments. That doesn’t mean that you will always hear the same thing. My friend Margaret is my go-to-person for fun stuff, and she is my medical appointment buddy. I value her ears at my appointments. I think I heard what I did because I had already reconciled myself to having the disease. I knew what the positive CCP and the swan neck deformity meant.

Early the next week, the nurse contacted me to let me know they had called in the  Methotrexate; however, I didn’t start the medicine for a few weeks. That is a story for another post.

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Painful Patches: Rheumatoid Arthritis

March 17, 2017
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        I have a lot of beautiful patches and a few painful ones. My newest painful patch is rheumatoid arthritis.

For me, recognizing I had RA is like the anecdote of a frog in a pot of water. As the story goes, if you put a frog in a pan of room temperature water, you can slowly increase the water temperature without the frog realizing it. Basically, the frog remains oblivious and never recognizes the dangerous situation.

About 14 years ago, for several weeks I woke up every morning with both of my hands hurting. I cried. I remembered the picture of my great-grandmother’s RA deformed hands and cried even more. I was sure I had RA.

When I went to the doctor, he did a RF test. “Good news,” he said. “It’s negative.” For him, it was the end of discussion. He diagnosed it as a virus. It didn’t sound right to me, but he was the expert so I accepted what he said. I wanted to believe I didn’t have RA. After a few weeks, my hands stopped aching and I moved on, oblivious.

Not long after my hands had been hurting, I had periodic inflammation of the white of my eyes: scleritis (often caused by RA). It was odd. I went to see an ophthalmologist  where I was asked about other medical conditions. I didn’t have any that I knew of. He said not to worry about it and prescribed an anti-inflammatory eye drop.

Throughout this same period, I was perpetually complaining of fatigue at the doctor’s office. They ordered a sleep study. No problems. They checked my thyroid more times than I can remember. No problem. The tests were always negative. It made me feel like a hypochondriac. I stopped mentioning it.

Of course, I also had random pains. My hands were stiff in the mornings but not painful. By now, I was in my late 30s. I figured I was experiencing the normal aches and pains of aging. However, my right pinky finger hurt at the joint closest to the nail. I couldn’t stand anything to touch the joint.  My feet would hurt but I rarely said anything because I thought it was related to being overweight.

I noticed my pinky finger started to look wonky (a technical medical term). Basically, the joint closest to the nail could not straighten out and the middle joint caved in instead of being straight. I mentioned it to my doctor and she told me I had broken the joint at some point. I didn’t think I had broken it, but I accepted it and moved on, oblivious.

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 Towards the end of 2015, hands were starting to bother me enough that I was paying attention. My ring finger on my right hand was starting to deform. I mentioned it to the doctor. She said it was osteoarthritis, and there wasn’t anything they could do. So, I brushed it aside.

 In March of 2016, I was visiting my sister in SC. We were sitting around talking. After about an hour, Amanda interrupted me and asked me if I could straighten out my pinkies or was I bending them on purpose. I laughed and told her that the doctor said I must have broken the right one at some time. (Now, I have broken a toe before and I promise you that I noticed breaking it. It hurt!). She said that she doubted that I would have broke it and not noticed but that did not account for the deformity starting in the left hand. She also pointed out the obvious swelling of the knuckles in both hands. Oblivious.

I knew my hands hurt, but I was holding on tight to that negative RF test from years ago. Little did I know that approximately 30% of people with RA have a negative RF.

I made the appointment with my doctor. The first two knuckle joints on both hands were so swollen you could not even see them. Both of my pinky fingers were deformed as well as the ring finger on my right hand. She did a round of tests.

Again, my RF was negative; however, she also ran a anti-CCP which was positive. She contacted me and asked me if I wanted to see a rheumatologist because the CCP has a false positive rate of 15%. I looked at my deformed fingers, recognizing the constant ache in them, the ache in my elbows, the stabbing pains in my feet; it wasn’t a question for me. I had no doubt that I had RA. I had woken up from my oblivion.

I told her I wanted the referral.

People ask me how long I have had RA. I tell them 14 years. However, I wasn’t officially diagnosed until June 24, 2016, just 9 months ago.

Tarlov’s: An Update

July 5, 2014

December 12, 2013 was the one year anniversary of my Tarlov Cyst surgery. It wasn’t until then that I started to see real improvement physically. Prior to the one year mark, I had been slowly improving, but around 11-12 months post-op, I started to see significant changes. For instance, up to that point, I had been unable to sit on my couch. I only sat in a wheel chair with a tush cush. I pretty much hurt every day.

Around Thanksgiving, I discovered I was comfortable sitting on the couch which was incredibly exciting. I even started reading sitting up. (Oh, how I had missed that. Sometimes, it really is the little things!) I did not have to rest every day. I could shop and walk around without sciatic pain and my feet going numb.

Then…(add the ominous music) I did a ton of traveling from late December through the end of March, about 2,900 miles worth. Needless to say, that was WAY TOO MUCH. I started to really regress. I couldn’t sit for long in my wheelchair; I couldn’t sit on the couch; I couldn’t stand for long; I couldn’t lean over the kitchen counter. It was heart-breaking.

In May, my doctor bumped up my Lyrcia to three times a day and did a round of steroids. I noticed a little improvement, but I was still struggling physically. Dr. F’s office ordered an MRI and suggested doing another round of steroids which my family doctor ordered. I also started physical therapy at the same time. I am blessed that another TC’er lives in my area and even goes to the same family practice I do. She suggested using the same physical therapist she had used the previous year. I am so glad I did. My physical therapist, Holly, listens when I tell her an exercise bothers me and she discontinues it, no questions asked. She is familiar with Tarlov’s and is careful to slowly add in exercises to see if they cause  a flare.

My exciting news is that today is the fourth day this week that I have walked almost a mile. I am not proud of myself. I would have done this long ago if I had been physically able. But, I am very excited.

 WHERE I WAS and WHERE I AM NOW

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A New Patch – Tarlov Cyst Disease

February 16, 2013
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Last June,  I was diagnosed with  a painful chronic illness (Tarlov Cyst Disease). Most of my friends, even those who understand the extent of my current symptoms, don’t realize how serious a disease this is.

SInce I am 8 weeks post op from Tarlov Cyst surgery and will be starting my journal from this point forward, I will go back and add a summary of my pre-op and early post-op journey in the next few days. My desire is to give hope to those “googling” for information about their new diagnosis or to those who are contemplating having surgery.

Currently, I have two main struggles that are intertwined: the balance of medications and activity, and the fear of tomorrow.

The Rx Balancing Act
Unfortunately, I feel better on medicine. Did I mention that I would prefer not to take medications? Worrying about the consequences of long term drug usage weighs on me. What will give out first? My ability to withstand pain or my liver?

My second medication concern is that if I take the dosage I really need, will my body will become acclimated to the drugs? How soon they will stop working?

The Future
This disease is painful and debilitating. Not worrying about tomorrow is difficult. I am a born-again believer in Christ. My hope is in the Lord. I want my hope to be in the Lord. “So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own” (Matthew 6:34 NASB). Right now I struggle to enjoy today and not worry about tomorrow. It is a process.

This post sounds negative. Sometimes I am. Most of the time I am positive and hopeful.

Things I did today:
1.) Went to a house where our church members had gathered to paint. I needed to pick up my daughter to take to her cheerleading practice.
2.) I went to the Verizon store. I have had cell phone issues for the past week. I waited for my turn and was able to stand comfortably to discuss my issues with the Verizon associate (I am getting a new phone.)
3.) I took and picked up my daughter from cheerleading practice.
4.) Sat a lot. It wasn’t always comfortable, but I did it.

Current Medications:
1.) Lyrica 75 mg at bedtime
2.) Motrin 800 once (I think) Honestly, I forgot if I took any.

Last week I used a 7 day trial of Celebrex that was prescribed last summer. It was amazing. I almost felt normal. I did not realize how badly I felt until I felt better.

I am going to the doctor this week and getting a Rx for the Celebrex. So much for my liver or my stomach lining.

Cheerleading Wrap Up

February 19, 2012
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A very exciting opprtunity was given to Lindsay’s cheerleading team. Since they won the Pop Warner National Championship in their division, NC State invited them to perform at their January 19th basketball game against Boston College.  Here is the link to the NC State video http://www.youtube.com/watch?v=EnH0fHPajNI which they made for us.

A few days after their NC State performance, Lindsay’s team met for the regular season wrap-up celebration on February 4th.

 

All three of their first place trophies were there for picture opportunities.

Although they have ended their “regular” season, the majority of the girls (including Lindsay) decided to come back for intermediate year round. They are practicing once a week for a May competition.

Happy New Year

February 1, 2012
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I am always surprised when people scoff at making goals at the beginning of a new year. I love goals and I love fresh starts; New Year’s brings the two together. The hope of change motivates me, spurs me, entices me.

For 2011, I made two staggering resolutions. First, I gave up soda. (I am still amazed at this one. I love soda!) Second, I gave up candy. I made it all year without either. The candy was easy because I could eat other sweets, and I did. The soda, however, is a different story. It is still a struggle today; and it has been 396 days since I had any. I loved it then and I love it now; I just love it from a distance.

My success last year encouraged me to dream big for 2012. For New Year’s I gave up eating white sugar in everything, and so far I have made it 31 days. Not surprisingly, I have dropped 20 lbs. I feel better and I weigh less, so far a win-win situation.

Today started the last of my New Year’s Resolutions.  I am going to blog regularly, 4-5 times a week, and I am going to do a 365 project this year.  During the first week of January when I was cooking from scratch every dawn to dusk, I decided I needed to stagger the rest of my resolutions. By posting eight pictures each week, eventually I will be caught up.

Hedgehog at Co-op

2/365 Lindsay Before the Performance

Both of these pictures are straight out of my iphone camera.

Thinking Through Titus 2

July 19, 2011
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My Family

This has been a rough year for Jim and me. We have struggled differently than in years past. I am sad to say we have fallen into the typical trap of growing apart because of the focus on
kids and work.

In days gone by, we didn’t communicate as much as we wanted, but
it was because our days were consumed with our small children. Since our children have
grown up (my youngest is almost 14), we have found more and more time to spend
together, and less and less to say. Thankfully we both love the Lord and are
committed to working through this!

Today I had a conversation with a friend with similar struggles.
She has younger children than I do, but essentially our situation is the same.
We are the God-given helpmates to our husbands.

I had to remind myself what a helpmate means. Is it to make sure his meals are
fixed, his laundry done, or his house cleaned? Does it mean to remember his
doctor appointments and to care for his children? What about picking up his
dirty socks 7,665 times (that is 365 x 21)? Does it mean praying for him?
Submitting to him? Sacrificing my free time so he can serve others?

Yes.

It helps me to remember my husband is my brother in Christ. The Christian sibling I know
best on the earth. Do I serve him unto the Lord?

Titus 2:5 says that older women should teach the younger to love
their husband and children, be workers at home, subject to their husbands so
that the word of God may not be dishonored. The impact of respecting my
husband, caring for my home and loving my family is so the word of God will not
be dishonored.

Wow.