My Personal Journey With Rheumatoid Arthritis
If it Doesn't Kill You, Just Ignore it!
While I was in the military I had two very different career fields, AMMO and then Mental Health. I did AMMO from 1998-2004 which meant inspecting, building, transporting, and destroying a variety of military small arms, grenades, and bombs. It involved many days working outside in the rain, snow, heat, cold, wind, etc. We basically did our job in all elements except for lightening…something about explosives and lightening you just don’t want to be around! Working with my hands was a daily necessity. So when my hands began to hurt with daily pain and swelling back in 2002 or so I just ignored it. The joints of my thumbs and fingers felt as if they were severely bruised. I though for sure that it was just a result of working hard. I also had chronic back pain, but again attributed this to working hard, bending, reaching, pulling, pushing, and carrying heavy boxes and munitions. As long as I could keep moving I figured there was nothing really wrong.
Imaging of the Hands
Rheumatoid Arthritis Symptoms
According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases
- Tender, warm, swollen joints
- Symmetrical pattern of affected joints
- Joint inflammation often affecting the wrist and finger joints closest to the hand
- Joint inflammation sometimes affecting other joints, including the neck, shoulders, elbows, hips, knees, ankles, and feet
- Fatigue, occasional fevers, a loss of energy
- Pain and stiffness lasting for more than 30 minutes in the morning or after a long rest
- Symptoms that last for many years
- Variability of symptoms among people with the disease
Getting to a Specialist
Flash forward a few years to 2007. I had retrained and was now working in a nice, cozy hospital as a Mental Health Technician avoiding the elements and hardly lifting anything heavier than a box of printer paper. My hands continued to hurt and began to swell so much I could not remove my jewelry. My fingers looked like sausages to me, and my hands felt like heaters every morning. A trip to my doctor was basically a waste of time. I was prescribed good ole vitamin M…Motrin. It’s the cure all among military doctors. After some time I became frustrated and went back because my hands continued to ache, swell, and be on fire. This time the doctor had me do a round of lab tests to determine if it was RA along with x-rays. The thing about these lab tests and x-rays…they don’t always identify that there is RA present. The lab tests can come back negative even in people with RA, as did mine. Another lab test performed however showed that I was positive for inflammation. Apparently the first lab has a range that I was just under thereby making he results negative. The x-rays showed no deterioration of the joints or deformity, but unfortunately x-rays aren’t great in diagnosing RA in the early stages either. Instead x-rays are great to track and notice changes in bones and joints as time marches on. The doctor seemed annoyed by the labs since one looked as if I had nothing, but another looked as if I had something! So, he referred me to a Rheumatologist. YAY!!
Do You Know Someone With Rheumatoid Arthritis?
Who Do You Know?
Making a Diagnosis and Medication
I went off to the Rheumatologist…a word which shows up as misspelled often, but yes, that’s how it’s spelled. More labs and x-rays. This woman felt my joints, looked at my hands, and asked a series of questions that seemed to have no direct relation to the way my hands were feeling. Do I ever have sores in my mouth? Yeast infections? Strep throat? And so on. It seemed so weird to me that many of her questions about infections and illnesses I had to admit that yes, I had experienced these things many times in my life. But so what? Doesn’t everyone have canker sores every month? I had learned to associate those with my menstrual cycle, which is a whole different issue in itself! Through my own research I have learned that there may be a link between canker sores and RA as both are related to the immune system.
My Rheumy (a nickname used for the word ‘Rheumatologist’ by those who frequent RA blogs and boards) immediately started me on Plaquenil. Then I began a cycle of medication for a month, then come in for lab testing, then went back a month after that to be seen by the doc again. The Plaquenil wasn’t doing anything alone, so Methotrexate and Folic Acid were added. Now the when you look up Methotrexate you will see that it is also used to treat cancer. When my Rheumy told me this I initially freaked out! I mean come on! A cancer drug! It was scary. But I did as was told. Not only was my Rheumy a doctor, but she had RA herself, which somehow reassured me that she would do the best thing for me since she was going through all of this herself.
Somewhere in this time I managed to lose 30 pounds. I don’t know if it was the exercise since I was doing Insanity by Beach Body while only eating 1 meal a day (not recommended or endorsed as a good way to lose weight BTW), or if it was somehow the medications I was loading into my body. I dropped down from a size 12 to a size 6 or 4 depending on the designer. I began to see my ribs in the mirror. My issues with food, weight, and my body are for another discussion though; let me get back to the RA.
Another cycle of taking meds and lab work and then a return to the doctor. Still not enough improvement. Rheumy decided to add a shot to my regimen, Humira. I got prescribed an auto-inject shot that I would have to give myself in either the stomach or the thigh every other week. I was familiar with the auto-inject style as I had been giving my flight commander her Humira shot at work because she needed someone else to do it for her. Kind of dejavue considering that I was now going to be doing the same thing.
My husband and I decided on Wednesday nights to give the shot because it seemed easy to remember and there was not a lot going on that day of the week. I chose my stomach instead of my thighs because there was a lot of loose skin there and not so much on my thighs. But I was told not to give the shot in stretch marks…kind of hard as my stomach is a virtual road map of stretch marks from having 4 children. First I lay on the bed and put an ice pack on the area I had selected to numb the skin. Then I cleaned it with an alcohol wipe. I pinched the skin, aligned the injector, and clicked it. I could see the yellowish liquid leave the injector and go in. It burned. I wanted to yank it out, but you have to wait at least 10 seconds to make sure it all goes in. AAgghhh! Ok, done with that. Don’t have to do another shot for two weeks. Whew!
The next time the shot came around I felt a lot of anxiety and anticipation of the pain. It didn’t go well this time. I ended up yanking the shot out before all the medication had gone in and it continued to shoot out of the needle all over my belly. I just wasted half of a shot that costs around $1200, or more. Not good.
The next time we decided my husband was going to do the honors. So I laid there and tucked my hands up under my butt to keep myself from grabbing at him as he injected me. It worked! All of the medication went in this time! And so, this is how we continued…until my insurance ran out that is.
A Side Note About Gel Phenomenon
Gel Phenomenon is an annoying aspect of this disease. Imagine falling asleep on the couch while watching a movie. Perhaps it's only a 30 minute nap, or maybe it's 2 hours. It doesn't matter. When you wake up to move your entire body feels locked in place, immoveable, like the Tin Man from the movie The Wizard of Oz. Imagine that this happens to you not only when you fall asleep, but every time you are inactive for a period of time. Maybe sitting at a desk, laying in bed, going to a movie, driving a car, etc. The body at rest in someone with Rheumatoid Arthritis develops this annoying symptom which seems to peak with fatigue. As a cruel side effect of the fatigue symptom gel phenomenon takes hold and there is no magic oil can to loosen the joints.
2010 - Changes
I left the military June 30, 2010. I was given 6 additional months of medical care. I was able to get a contract job on the military base, but it paid crap and I knew I wasn’t going to stay there forever and we couldn’t afford the medical coverage, so after the 6 months ended, so did my rheumatology care and all my medications. I started a new job in Austin, Texas in March 2011, got signed up for medical coverage, finally got approval through the Veterans Affairs for medical coverage and waited to see a new Rheumy and get started all over again. A 6 months lapse in medication and medical care left me feeling as if my body was deteriorating. Instead of just having pain, swelling, stiffness, and warmth in my hands I now had it in my feet, knees, and spine. I was anxious to hurry up and see the doctor, but also a bit worried about the damage that may have been done while waiting. It hurt to stand up, to carry things in my hands, to turn knobs and open things, to bend over, walk, drive…blah blah blah…it just hurt damn it!
My new Rheumatologist at the VA clinic in Austin was the only one available. There weren’t any choices other than to pay out of pocket to see one outside the VA, or travel to the next closest VA clinic in Temple, Texas. Really, I had no option, so I was stuck. The new doctor began running a long list of blood tests, had x-rays done, and performed a physical exam. I was put on Plaquenil and Naproxen to control the RA as to prevent further damage to my joints. Mine is a relatively low severity case. If it progresses, there is possibility of twisting fingers and a slew of health problems ranging from heart disease to blindness. Sounds like a great time…not.
As Of 2013
It’s now 2013 and I am monitored regularly by my VA Rheumatologist, although she is not my favorite person in the world. We don’t have a great patient/doctor relationship and I find it difficult to communicate with her due to cultural and language differences. She’s also very conservative when it comes to managing my RA and believes in a less is more approach despite newer research that shows it’s better to aggressively treat in the beginning rather than wait for it to progress and then get aggressive. For now, I’ll continue to stick with her because paying out of pocket to see someone else would be costly when you have to be seen every other month. As a disabled veteran with 50% disability I am paying nothing right now, and free is pretty darn good.
My symptoms have improved recently which I believe may be related to changes in my diet to eating a primarily paleo style. I also recently had a total hysterectomy and oopherectomy and have noticed a drop in arthritis pain and swelling since the removal of ovaries, uterus, fallopian tubes, and cervix. The relationship between rheumatoid arthritis, endometriosis, and adenomysois may be greater than I thought and by removing the organs partly responsible for reproductive related auto-immune diseases perhaps it has positively impacted the RA.
A Few Related Complications
Nodules, rashes, vasculitus
Scleritis, vision loss, Sjorgen's Syndrome
Nodules, pleuritis, lung disease, pulmonary hypertension
Pericarditis, myocarditis, increased risks of stroke and heart disease
Anemia, Felty's Syndrome
Update for 2014
Since my last update several things have progressed related to my RA. My rheumatologist has added a few diagnosis to my growing list of medical issues. Based on lab results, physical symptoms, and reported symptoms, both Lupus and Scleroderma are suspected. Because of this I am now also diagnosed with Undifferentiated Connective Tissue Disease. My white blood count has been low for several years now giving me a diagnosis of a blood disorder. Chronic fatigue is a daily issue. Just when I thought things were going to get better, they have seriously deteriorated.
As for the veteran disability, I was increased to 70% following my hysterectomy secondary to endometriosis, and may be looking at another change due to multiple issues. A large worry for me is the possibility that working may become very difficult in the near future.
© 2013 Pamela Troester