Whether you’re newly diagnosed or a veteran living with a chronic illness, wearing the label, ‘sick and tired,’ can take its toll on a person, both physically and emotionally. Dealing with a long-term disease is one thing, but adding secondary illnesses, side effects from medications, physical losses, loneliness, financial responsibilities and the weight of carrying numerous burdens such as guilt, worthiness and fatigue, gives new meaning to the term, ‘never ending pain.’
Since I’ve been a rheumatoid arthritis, or RA Veteran for more than 25 years, have an honorary membership with hospitals in multiple states, am on a first name basis with the medical community and often referred to as a ‘professional patient’, dealing with the burdens of arthritis should be a second nature, right? Apparently not!
Although I’ve managed to avoid the operating room in 2011, I have kept the medical profession in business with a new list of questionable side effects and undiagnosed symptoms.
The first part of this year, I struggled with shortness of breath for six weeks, completely stumping four physicians while undergoing a host of tests and incurring expenses, with no medical explanation. A few months later, my normally low blood pressure became an issue rising high enough to put me in crisis mode justifying an ambulance ride complete with lights and sirens. As stated in my blog, “Look, No Arms!” (8/10/11), I’ve had to deal with increasing intense pain, being forced to accept the harsh reality of my future without arms.
This has been a challenging year to say the least! Rather than listing all of my medical challenges over the last 10 months, I’ll sum it up by saying, I started the year taking three pills daily – now my prescription intake is 33 pills every day!
And finally … sometimes I wonder if I’ll ever learn to be careful what I wish for around this creature that’s living inside of me.
Over the years, I’ve given RA the credit of having a mind of its own and referred to it as a living being, calling it ‘a Villain’ and ‘the Beast Within.’ I’ve even labeled it as a fourth family member, saying it’s our problem child who ruthlessly interferes with plans and activities, disrupting our life without remorse.
Believing that my body was figuratively falling apart and being truly overwhelmed by the constant sickness and exhaustion described above, recently I lost control and became angry with my RA. In a moment of rage, I shouted the words “Give me a break!” The following day, I literally broke another bone in my arm by simply doing nothing!
Are you ‘sick and tired’ of being sick AND tired? Have you had a break from your illness, metaphorically or literally? What tips can you share to help the rest of us cope?
All my blood tests are "normal", which just makes me feel crazy. I wonder if the prednisone isn't altering the results? I've tried to taper off the prednisone but all my symptoms come back with a vengeance. I'm also on methotrexate and have tried many other drugs such as plaquinil, sulfasizine, all with no help.
My father was diagnosed 5 yrs ago with severe scleraderma. We see the same rheumy. The rheumy is starting me on humira injections tomorrow.
All of this is overwhelming. I have had health problems all my life, but nothing as all consuming and unpredictable as this pain. Also have pain in both feet and toes. Now my hips are killing me. Knees sometimes hurt. Both shoulders hurt bad. I've been tested for celiac and it was negative.
As I think back to what has changed over the past year and a half, I am reminded that my gyn took me off HRT (hormone replacement therapy) due to regrowing endometriosis for 20 years after my total hysterectomy at age 23.
Could the hormonal change cause the RA symptoms? Perhaps I'm predisposed due to my father's autoimmune disease? I'm desperate for answers. Why are all my labs "normal"? Why is it that prednisone is the only thing that helps? I'm taking between 15-25 mg daily for past 1.5 years.
I have a strong faith and support system. Most days I can handle the pain. But I would like additional support and answers. Also I am going to a new PCP next week. His wife has the same disease as my dad so I'm hoping he'll get to the bottom of this ordeal.
Blessings,
Leigh
You raised a good question. Thankfully I've not had to deal with shingles, but seems like there's been an increase in the diagnosis recently. More and more people have commented on it. I'm curious to hear of others who've experienced shingles and how often.
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