Coping with Rare and Chronic Diseases – Part 2 of 2

I am grateful to have a daughter her handles her challenges with strength and grace, because I’ve had my own challenges with health during the past year. 

Around the time that Deanna was being diagnosed with Dystonia, I noticed a pain in the index finger on my left hand.  When I had the time to take a closer look, I saw that it was definitely swollen.  I went to my doctor, and a set of x-rays later, I got a diagnosis of Rheumatoid Arthritis and a referral to a Rheumatologist.

If you are referred to a Rheumatologist, be prepared for a long wait for that initial appointment.  It is nearly impossible to get in for at least 6 – 8 weeks after initial contact.  Once you get there, you are blessed if you find a physician on the other end that you like and trust.  I was blessed.

RA is an auto-immune disorder.  There is no cure. 

RA is the biggest challenge I have ever encountered.  I had no idea what I was facing when I complained about the pain in my “fat finger” and the knuckles in my right pinkie, and the ball of my right foot.  Within weeks of first noticing the pain and swelling, and before I found effective treatment (which took months), I was not only dealing with unrelenting pain, but the other symptoms of RA – incredible fatigue and total loss of appetite.

Some of you may think “loss of appetite?  Where do I sign up?”  I get that.  Unfortunately, when you combine loss of appetite with chronic fatigue, the expression “life’s a drag” becomes a reality.  You literally have to drag yourself – physically and mentally – into action.   No food equals no fuel to move your body or engage your brain.  I forced myself to eat every 3 hours to keep my body and my mind working, often at minimum levels. 

Well, for me they were minimum levels.  I have always been blessed with high energy and a sharp mind.  I’ve always been able to count on having plenty of “get up and go” to carry me through whatever I need to get done. 

Now I find that even when I am careful to make sure I’ve ingested fuel, my energy “got up and went” as they say.   

I have a weighted vest that I often use when I walk on my treadmill at home.  When the fatigue of RA strikes, I generally feel as if I am walking around wearing that weighted vest.  Everything requires more effort than “normal”.

I have a full-time career.  It is often demanding.  There are schedules to manage and deadlines to meet and tasks that must be done.  There is no time for a “time-out”.  Additionally, my daughter has a “team” of medical professionals that need to see her regularly.  During the past year, she’s had at least one doctor’s appointment every month.  Now that might not sound like a big deal, but Deanna can’t drive – so guess who gets to do the fetch and carry?

On days when we see her doctors, I drive 25 miles to her home (she recently moved, so now it’s 35 miles!), then up to 50 miles (to the most important and most frequently seen doctor – who also happens to be farthest from her home!), and then back 50 miles to her house – and then back 35 miles to my house (shorter if I go to work from a morning of fetch and carry!).

This would be a challenge on any day.  Lucky for me, driving is not an issue.  And of course I would do anything for my daughter.

But I am nearly 60 years old.  This routine – carried out under the devastating fatigue of RA – just about sucked the life out of me while I was going through the process of finding an effective treatment.  Even with treatment, fatigue and loss of appetite pop up here and there.  That’s just the nature of RA. 

Auto-immune – it’s a bitch.

Until I found relief, I lived with daily pain.  I could not escape it.  The worst was in my foot.  I have to walk, after all, and getting out of bed in the morning and putting my foot on the floor and standing up was so excruciating it brought me to tears on several occasions.  I am not a crier. 

The pain also made the one physical activity I could count on – yoga – much more difficult.  I did not give up, but working on modifications for some of the poses was a big challenge.  Now that the pain is under control, I am simply dealing with lack of energy.  I no longer look forward to yoga – I do it despite how I feel.  I intend to keep doing it – but it requires commitment and discipline and resolve.  It is no longer a joy – and this makes me sad.

Treatment for RA involves drugs with a lot of warnings.  Reading the warning labels is a sobering experience.  The conversation in my head when I first did it was something like “Pain relief?  Sure – would you like a little cancer on the side?” and “Pain?  We can take care of that, but you may vomit a little.”  The first line of defense, methotrexate, was one of the original drugs used in chemotherapy.  Along with my methotrexate prescription, my Rheumatologist gave me a prescription for extra folic acid – so my hair wouldn’t fall out!

Joy!

Here’s the list of common side effects of methotrexate:  Dizziness; drowsiness; general body discomfort; headache; loss of appetite; mild hair loss; mild sore throat; mild stomach pain; nausea; tiredness.

Warnings and precautions for Enbrel include “serious infections, tuberculosis, invasive Fungal Infections, Neurologic Events, Lymphomas, Leukemia, non-lymphoma skin cancer, melanoma”, 

And mind you, this is not a complete list of side effects!  The most serious side effect is liver damage – as in cirrhosis or fibrosis.  You WILL take a blood test at every office visit if you take methotrexate – to monitor your liver function – even if you do not take the injectable form (which as yet, I do not.) 

I consider myself lucky.  I no longer have to worry about menstrual side-effects, unplanned pregnancies, nursing, etc.  There are young women who are afflicted with RA who have to be on birth-control and stop breast-feeding because this is a chemo-type drug.

Now, I ask you – would you sign up for this if you didn’t absolutely feel you had to?

The worst thing that happened when I was looking for the right treatment was having an adverse reaction to an injection on the first “biologic” I tried.  As soon as I injected the serum, the area around the injection site swelled like a balloon.  20 minutes later, I was feeling “neurological effects” and scared to death. 

The only reason I was determined to do these injections was because the first one caused such incredible relief.  The daily pain had terrible effect on my quality of life, similar to how I felt when I developed sciatica after a fall.  I did not recognize the effect this was having on me until the pain was gone.  It was as if someone had turned on a light in a dim room.  After months of running at a 4 – 5 on a scale of 1 – 10, suddenly I was hitting 9’s and 10’s.  

So despite my discomfort with all the potential side effects, the pain won out.   I took my medicine and continue to do so.   I consider myself lucky to have found an effective treatment.  I recently had a set of X-rays and compared to my baseline last year, there has been no further deterioration.  I don’t like having to take pills and give myself an injection every week, but it seems a small price to pay to avoid the crippling effects and pain of the disease.

Recently, I discovered that RA can also have an effect on vision.  Although it was disturbing, I was gratified to finally have an explanation for the loss of visual acuity I’d experienced in the past year.  All this time I’d been blaming my Lasik surgery for “wearing off”.  Now I know – part of it is RA-related. 

This is another reason to be grateful for effective treatment, and thankful that all I have to do is swallow a few pills and take a shot once a week to hold steady.  Otherwise, I’d be facing my future with the fear of becoming blind and crippled!

A word here about the practical aspects of chronic and rare illnesses – the costs.  The price of my recent x-rays was $518 – with insurance coverage.  My healthcare flexible payment account was depleted months ago, due to the demands of Deanna’s illnesses and now my own.  I am stuck with this bill but acknowledge that “at least I only have to get x-rays once a year.” 

I have always guarded my health – more than most people.  I did so to mitigate effects of what I might have inherited from birth-parents I never knew.  Without a family medical history, it is impossible to know if you are at risk for cancer, heart-disease, stroke, etc.   As one ages, it is likely these inherited tendencies will appear.  If you do not eat nutritiously and get regular exercise, you are inviting “lifestyle diseases”.

My advice is take steps while you are young to take care of your health.  I likely inherited my RA.  Deanna’s conditions came out of the clear blue sky.  Being born with a single kidney, and coming down with Dystonia and Narcolepsy – these are things that just happen.

Just a few months ago, a colleague at work was confronted with something far worse than anything my daughter or I have ever faced – a brain tumor.  To complicate matters, it was growing during her second pregnancy.  The early arrival of her second daughter in late July likely saved her life.  Two days later, she had brain surgery.  She is now facing radiation and chemotherapy.

Another acquaintance has been spending the past several months aiding and comforting his wife, who has had a relapse of leukemia.    

So while it’s been a fairly rough year for Deanna and me, we are always mindful of how lucky we are.  Our burdens are light in comparison to so many others.  There are days when that’s difficult to remember, but something always reminds us. 

Be thankful for your good health, but work to stay healthy.  If you are struggling with your weight or fitness levels, start now to overcome those issues.  Eat well, and get proper exercise.  I promise you that it will go a long way in preventing disease, and make it a whole lot easier to fight it when it eventually does show up, as it is likely to do with all of us.

About bonniejpreston

Life is an adventure. Make every day count. Enrich the lives of those you meet along the way. Don't show up at the end with a wish list. Invest in your health - the dividends paid are priceless. Listen at least twice as much as you talk. Enjoy the journey. Namaste
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4 Responses to Coping with Rare and Chronic Diseases – Part 2 of 2

  1. Jeanne says:

    Bonnie, I’ve known much of this as you’ve struggled through it, but seeing it all here in one big pile really gives me a clear idea of how incredibly hard all your own medical challenges have been. You’re pretty amazing, and I mean that in all sincerity.

  2. Debbie says:

    Hi,
    I’m Debbie. I live in Trinidad in the Caribbean and I was diagnosed with RA at age 28. I am now 53. At the time of diagnosis I had a five year old and a two year old. I’m really very fortunate to have been blessed with a husband who took over and believed there was something else wrong with me when two doctors said I was clinically depressed and anemic. He did not believe them and told them so. He encouraged me to seek other opinions until I got a diagnosis. My diagnosis took almost 18 months. Because unlike classic RA (which tends to start in the hands), mine started in my knees they looked for other things until one doctor asked for some family history and did some more tests.

    I know exactly how you feel. There are good and even great days and there are bad days. I’ve been on methotrexate for 20 years and have done quite well on it. I know the side effects but I don’t dwell on them. I began by taking 10mg per week but I now take 20mg per week. Sometimes I experience nausea, sometimes I don’t. I’ve experienced some of the other side effects but mercifully all is well. My biggest scare was 2 years ago when I seemed to display some of the symptoms of Pulmonary Fibrosis but I managed to get the all clear in the end. I’ve been hospitalized for several weeks with serious RA symptoms and I’ve had rigorous physical therapy. I also take any painkiller that works at the time. I try to just thank God for having seen my children grown and being able to spend time with my husband. I walk but not for long distances and my hands, in the last 2 years, have begun to swell and the fingers are twisting. I experience back pains and shoulder pains if I drive more than once or twice per week so I miss driving.

    RA is a drag – literally! However, having this disease has taught me to prioritize and value all that I can do and experience. Most of all I value my family and time. I don’t have time for unkind people, silly people, bigots, selfish people or any other people like that. My family is wonderful. My beautiful loving daughter lives in the sister island of Tobago and also has a positve RA factor. She is doing well although she is not on any medicine. My wonderful caring son lives at home and remembers to kiss me just because he can. My husband has had to live the “In sickness and in health” vow and has lived it well. I love and enjoy going for long drives (although I’m usually quite stiff in the end), the beach, reading in bed on a rainy day and a good slice of Cheese cake.
    My hands are tired and painful so I must stop now. However tell myself this all the time:
    I have Rheumatoid Arthritis but……… Rheumatoid Arthritis does not have me!

    Debbie

    • Debbie, thank you for sharing your struggle. There are many of us out there. I’d like to share http://rawarrior.com/ with you. It’s a great site, and a place where you can share your story with others. Hang in there, and thank you again for taking the time to comment. Bonnie

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