A Tale of the First Days With RA...
I remember that day, as if it were yesterday. Walking out of my rheumatologist's office, with the news, that I would have to live with the rest of my life. It was on a Wednesday morning and I was still in shock by having that reality, sink into my brain. You see, I was not actually told the words, "You have rheumatoid arthritis." I was told something more like, "This is going to take longer, than we thought." His nurse proceeded to hand me a bunch of pamphlets, with how I was supposed to live with this for the rest of my life. I had my answer right there. I had rheumatoid arthritis.
I was thirty one years old at the time and thought my life was OVER. I was sole breadwinner, so how was I supposed to live and continue a full-time job? At this point, my RA was progressing quite rapidly.
I need to back up here, approximately three years prior. I had been diagnosed with costochondritis, which is a painful condition involving the chest wall. I had been to numerous doctors and specialists to get a handle on this. I even had to quit working for a time, as I was in so much pain and could not function. The plan was for me to go to Mayo Clinic in Rochester, Minnesota, but I needed to have good insurance.
I was able to work a part-time job, to at least help me get by. It eventually worked into a full-time position at the clinic, where I am currently employed. That was twenty eight years ago. I went to Mayo Clinic after my probationary period was over and I now had good insurance.
I saw a rheumatologist there and all I basically was told, was that my blood fats were too damn high. His words. I had never been spoken to like this before, from any physician, so to hear this from someone at the World Famous Mayo Clinic, took me for a loop.
He didn't even do a rheumatoid factor, which would have certainly been high. I knew nothing about a test like that at the time, so who was I to question? I went to a pain clinic and got injected again, with cortisone, but it only felt better until it wore off. I went home with no definitive answer, as to how I was supposed to tolerate this pain, possibly for the rest of my life.
I did however, have a friend, who was also one of the vascular surgeons, I was a receptionist for at the time. He went to the ends of the earth, to find another surgeon that could help me. It was in November of that year, almost at Thanksgiving that he did. A heart surgeon performed a procedure and removed several cartilages from the costochondral junction. I have about a five inch scar to prove it. We all thought, this was going to be the answer to my problem. Little did we know, that the RA had been cooking up all along.
So now that you have some background, let me continue with the early days of living with RA. I had been having problems walking, as my ankles were so swollen, it was hard to get into a decent pair of shoes. My feet hurt, so I was buying expensive shoes, as that was recommended. I was told that I probably had plantar fasciitis, although it was never confirmed, as I didn't see a podiatrist at the time.
My fingers and wrists were also involved. My left pinky acted as a trigger finger, that I had to pull back, with my fingers on my other hand. I was also experiencing bursitis, involving my left shoulder. This was several months prior to my diagnosis of RA.
I ended up seeing another physician, because my PCP was not available. This physician did several tests and this is where I finally heard about a rheumatoid factor test. He also did an ANA, because he was suspecting lupus. The RA factor was high, but the ANA test was negative. Still no definitive diagnosis.
I was pretty much walking around in a fog and not long after, had to start using my father's cane. I was walking to work, but I needed that assistance. This was getting serious by the day.
Now getting back to when I walked out of the rheumatologist's office on that dark Wednesday morning, I had to go back to work. I wasn't even sure how to process this, How was I going to tell my supervisor?
The rheumatologist not long after suggested that I go on disability. I told him that I was sole breadwinner and would work, until I couldn't work. Although at that time, I was sure that was the road that I would be going down soon.
I pretty much cried that first month, as I had mentioned before, that I thought my life was OVER, as I knew it. My PCP and rheumatologist knew they had to treat this aggressively, so methotrexate was the choice and also NSAIDS. As we all know, these are nasty things to have to deal with in living with this disease.
You feel helpless. You want to get better, so you do what your doctor tells you to do. It seemed to work for a time, but then it started to do nasty things to my body. I ended up with sores on my scalp, even something under my right foot, that looked like a wart. I was even told that I had athletes foot. It became so bad, that it tore all of my stockings, because it was so rough. Funny thing is, when I stopped taking the methotrexate, it suddenly went away.
I had been on it for over four and a half years and could not tolerate it anymore. I tried putting it in yogurt, as it was being injected now. I was developing so much scar tissue, that we had to stop injections in my skin. I could not tolerate the pills, so we tried every possible avenue to make it tolerable. No one, not even my rheumatologist, who I had at that time, mentioned the use of folic acid, to help with nausea. I finally decided to wean myself off of the methotrexate. I would not recommend this, but I felt at the time, that it was my only way out. I told my PCP three months later.
I wanted my life back, not like it had been hijacked, in the early days of living with RA. I wanted to be able to exercise again. I was doing full range of motion exercises, twice a day, as I started that pretty much in the beginning. I found that keeping my joints mobile, helped me feel a bit better.
Thinking of getting out of a chair after sitting for so long, was pure agony. It took everything I had to perform such a task. This was only the beginning of what was ahead of me. So much has changed. There was no social media to reach out to. I tried a local arthritis support group, but truth be told, it was not really of any support. All I experienced, was what I afraid that I would become, and at that stage of my life, that was something that I was not able to face.
How was I going to live with RA for the rest of my life? This was only the beginning. The first dark days of coping...
This was part of RA Blog Week; Day One
I was thirty one years old at the time and thought my life was OVER. I was sole breadwinner, so how was I supposed to live and continue a full-time job? At this point, my RA was progressing quite rapidly.
I need to back up here, approximately three years prior. I had been diagnosed with costochondritis, which is a painful condition involving the chest wall. I had been to numerous doctors and specialists to get a handle on this. I even had to quit working for a time, as I was in so much pain and could not function. The plan was for me to go to Mayo Clinic in Rochester, Minnesota, but I needed to have good insurance.
I was able to work a part-time job, to at least help me get by. It eventually worked into a full-time position at the clinic, where I am currently employed. That was twenty eight years ago. I went to Mayo Clinic after my probationary period was over and I now had good insurance.
I saw a rheumatologist there and all I basically was told, was that my blood fats were too damn high. His words. I had never been spoken to like this before, from any physician, so to hear this from someone at the World Famous Mayo Clinic, took me for a loop.
He didn't even do a rheumatoid factor, which would have certainly been high. I knew nothing about a test like that at the time, so who was I to question? I went to a pain clinic and got injected again, with cortisone, but it only felt better until it wore off. I went home with no definitive answer, as to how I was supposed to tolerate this pain, possibly for the rest of my life.
I did however, have a friend, who was also one of the vascular surgeons, I was a receptionist for at the time. He went to the ends of the earth, to find another surgeon that could help me. It was in November of that year, almost at Thanksgiving that he did. A heart surgeon performed a procedure and removed several cartilages from the costochondral junction. I have about a five inch scar to prove it. We all thought, this was going to be the answer to my problem. Little did we know, that the RA had been cooking up all along.
So now that you have some background, let me continue with the early days of living with RA. I had been having problems walking, as my ankles were so swollen, it was hard to get into a decent pair of shoes. My feet hurt, so I was buying expensive shoes, as that was recommended. I was told that I probably had plantar fasciitis, although it was never confirmed, as I didn't see a podiatrist at the time.
My fingers and wrists were also involved. My left pinky acted as a trigger finger, that I had to pull back, with my fingers on my other hand. I was also experiencing bursitis, involving my left shoulder. This was several months prior to my diagnosis of RA.
I ended up seeing another physician, because my PCP was not available. This physician did several tests and this is where I finally heard about a rheumatoid factor test. He also did an ANA, because he was suspecting lupus. The RA factor was high, but the ANA test was negative. Still no definitive diagnosis.
I was pretty much walking around in a fog and not long after, had to start using my father's cane. I was walking to work, but I needed that assistance. This was getting serious by the day.
Now getting back to when I walked out of the rheumatologist's office on that dark Wednesday morning, I had to go back to work. I wasn't even sure how to process this, How was I going to tell my supervisor?
The rheumatologist not long after suggested that I go on disability. I told him that I was sole breadwinner and would work, until I couldn't work. Although at that time, I was sure that was the road that I would be going down soon.
I pretty much cried that first month, as I had mentioned before, that I thought my life was OVER, as I knew it. My PCP and rheumatologist knew they had to treat this aggressively, so methotrexate was the choice and also NSAIDS. As we all know, these are nasty things to have to deal with in living with this disease.
You feel helpless. You want to get better, so you do what your doctor tells you to do. It seemed to work for a time, but then it started to do nasty things to my body. I ended up with sores on my scalp, even something under my right foot, that looked like a wart. I was even told that I had athletes foot. It became so bad, that it tore all of my stockings, because it was so rough. Funny thing is, when I stopped taking the methotrexate, it suddenly went away.
I had been on it for over four and a half years and could not tolerate it anymore. I tried putting it in yogurt, as it was being injected now. I was developing so much scar tissue, that we had to stop injections in my skin. I could not tolerate the pills, so we tried every possible avenue to make it tolerable. No one, not even my rheumatologist, who I had at that time, mentioned the use of folic acid, to help with nausea. I finally decided to wean myself off of the methotrexate. I would not recommend this, but I felt at the time, that it was my only way out. I told my PCP three months later.
I wanted my life back, not like it had been hijacked, in the early days of living with RA. I wanted to be able to exercise again. I was doing full range of motion exercises, twice a day, as I started that pretty much in the beginning. I found that keeping my joints mobile, helped me feel a bit better.
Thinking of getting out of a chair after sitting for so long, was pure agony. It took everything I had to perform such a task. This was only the beginning of what was ahead of me. So much has changed. There was no social media to reach out to. I tried a local arthritis support group, but truth be told, it was not really of any support. All I experienced, was what I afraid that I would become, and at that stage of my life, that was something that I was not able to face.
How was I going to live with RA for the rest of my life? This was only the beginning. The first dark days of coping...
This was part of RA Blog Week; Day One
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