Tale of an Active RA Patient...
RA Blog Week - Day #2
Today's writing prompt is; Active versus reactive patients - We usually start as naïve and trusting patients, then at some point we realize we must take an active part in our own medical decisions. Tell the story of your move to active patient or why you are not there as yet.
As I shared yesterday, in the beginning of my RA journey, I was just trying to come to grips, with how I would continue to live with this devastating inflammatory disease.
I did start researching. You have to realize in 1991, I had no home computer, so my only resource was basically the public library. I would pick up free copies of the magazine, "Arthritis Today" at the clinic where I was employed. The next year I did subscribe, after attending an all day seminar about arthritis. It was informative, but I looked around at the people sitting at the various tables and saw all the damage that this disease had done to them.
I decided that from that moment on, I was going to do something, anything to make my life better. I was in the first ten years of living with this disease. I have to tell you in all honesty, that it was pure HELL at times.
I would wake up in the middle of the night with my knee so swollen and wanting to scream. I live in an apartment complex, so that probably would not have been a good idea.
I would talk to my PCP about different supplements and one in particular was ginger root. My mother, who has since passed, found some ginger root candy for me, as I was dealing with so much nausea from the methotrexate. As I mentioned yesterday, no one mentioned the use of folic acid to help counteract that side effect.
Finally I found some ginger root pills, that seemed to help for a time, along with ginseng, to help with energy, not that it really ever did. I was dragging pretty much every day. I never took any of these supplements without my PCP's approval. I found after a time, that they acted like a blood thinner. I was once told that if I were ever in a car accident, that I could possibly bleed to death, as when I bleed, I have a hard time with my blood clotting. I had to eventually stop taking those on a regular basis, as I was starting to develop heartburn.
I had pretty much tried every NSAID on the market and all with disastrous results. I guess that I shouldn't have been surprised that years later, I would end up with two stomach ulcers, although they were small, but they caused a lot of grief.
I never gave up hope and kept looking for something that would give me some kind of relief. Not a cure, as I knew there was no cure for RA. I of course was told by some, if I had enough faith, I would indeed be healed.
That is the worst thing you can tell someone. Let me tell you a bit about RA if you don't know already. It is a disease that attacks your immune system. Anything can occur, any organ can be attacked or joint at any time. You have no control what this disease can do to you. All you can do is choose how you will handle it, when anything happens. That is a big difference. It has nothing to do with how much faith you possess. Some things in this life just happen, plain and simple.
I know that I may have gotten off the track a bit, but that needed to be addressed. Anyway, I have become that active patient over the years. Most of my medical team will tell you, that I am very knowledgeable, when it comes to living with RA. Of course, you are given a free education, but you end up paying the loans, with health insurance and the high cost of medicines.
To show you what I mean by becoming that active patient. Six months ago I had my visit with my rheumy, the term we use for our rheumatologist. At that time I asked her, for my next set of lab tests, if we could add on the Sed Rate or Sedimentation Rate. That my friends, helps to gauge any disease activity that may be going on, such as a recent infection or inflammation of the joints.
Yesterday I had my six month check with my rheumy and I also had some lab tests done a couple of weeks ago. We always make sure, we have those close to my visit. Anyway, lo and behold my Sed Rate was high with the number being 74. I had it checked with my PCP, for my annual physical. Yes, I want it checked then too. It was only 21. Normal being less than 30. My PCP even put in his letter that I had that requested as well as my Vitamin D level.
I was actually told by my rheumatologist's office that having a low Vitamin D level, can be a cause for more joint pain. In my case that is true. I was in the low teen's when I was checked. I have managed to get it up to about 44 and it has made a world of difference. I even asked if we could try upping my IU's (International Units) when it was not quite were it should've been. He agreed and it finally is at a level that is comfortable. Being that I take a biologic, something we will be covering this week as well, it is important that that level not become too high. It can cause kidney or liver damage. Just because it's natural, doesn't mean you can take whatever or how much you want, without always consulting your medical provider first.
Anytime I have found something, now that I own a computer. Joined the ranks in 1999, the year that CreakyJoints was founded. A little trivia for my RA and arthritis community. Back to my research on the computer, I will go into this in detail, later this week with another prompt on biologics.
Yes, I have become that active patient. I am not afraid to ask for any test. I explain my reasoning for wanting it. My case in point I asked for a CT for my head pain, because I knew something was wrong. Never in my wildest dreams, did I ever think that a brain tumor would be found, but it was. Here we are eight years later, a brain tumor survivor. Thought I would give you a little background about the name of this blog; Brenda's Brainstorm & Trevor, who is my storyteller, for our tales.
Living with RA and becoming a BT survivor have continued to connect. This blog started as a result of my becoming a BT survivor. I am much more passionate about everything. That includes my role as an active patient. My journey continues...
Today's writing prompt is; Active versus reactive patients - We usually start as naïve and trusting patients, then at some point we realize we must take an active part in our own medical decisions. Tell the story of your move to active patient or why you are not there as yet.
As I shared yesterday, in the beginning of my RA journey, I was just trying to come to grips, with how I would continue to live with this devastating inflammatory disease.
I did start researching. You have to realize in 1991, I had no home computer, so my only resource was basically the public library. I would pick up free copies of the magazine, "Arthritis Today" at the clinic where I was employed. The next year I did subscribe, after attending an all day seminar about arthritis. It was informative, but I looked around at the people sitting at the various tables and saw all the damage that this disease had done to them.
I decided that from that moment on, I was going to do something, anything to make my life better. I was in the first ten years of living with this disease. I have to tell you in all honesty, that it was pure HELL at times.
I would wake up in the middle of the night with my knee so swollen and wanting to scream. I live in an apartment complex, so that probably would not have been a good idea.
I would talk to my PCP about different supplements and one in particular was ginger root. My mother, who has since passed, found some ginger root candy for me, as I was dealing with so much nausea from the methotrexate. As I mentioned yesterday, no one mentioned the use of folic acid to help counteract that side effect.
Finally I found some ginger root pills, that seemed to help for a time, along with ginseng, to help with energy, not that it really ever did. I was dragging pretty much every day. I never took any of these supplements without my PCP's approval. I found after a time, that they acted like a blood thinner. I was once told that if I were ever in a car accident, that I could possibly bleed to death, as when I bleed, I have a hard time with my blood clotting. I had to eventually stop taking those on a regular basis, as I was starting to develop heartburn.
I had pretty much tried every NSAID on the market and all with disastrous results. I guess that I shouldn't have been surprised that years later, I would end up with two stomach ulcers, although they were small, but they caused a lot of grief.
I never gave up hope and kept looking for something that would give me some kind of relief. Not a cure, as I knew there was no cure for RA. I of course was told by some, if I had enough faith, I would indeed be healed.
That is the worst thing you can tell someone. Let me tell you a bit about RA if you don't know already. It is a disease that attacks your immune system. Anything can occur, any organ can be attacked or joint at any time. You have no control what this disease can do to you. All you can do is choose how you will handle it, when anything happens. That is a big difference. It has nothing to do with how much faith you possess. Some things in this life just happen, plain and simple.
I know that I may have gotten off the track a bit, but that needed to be addressed. Anyway, I have become that active patient over the years. Most of my medical team will tell you, that I am very knowledgeable, when it comes to living with RA. Of course, you are given a free education, but you end up paying the loans, with health insurance and the high cost of medicines.
To show you what I mean by becoming that active patient. Six months ago I had my visit with my rheumy, the term we use for our rheumatologist. At that time I asked her, for my next set of lab tests, if we could add on the Sed Rate or Sedimentation Rate. That my friends, helps to gauge any disease activity that may be going on, such as a recent infection or inflammation of the joints.
Yesterday I had my six month check with my rheumy and I also had some lab tests done a couple of weeks ago. We always make sure, we have those close to my visit. Anyway, lo and behold my Sed Rate was high with the number being 74. I had it checked with my PCP, for my annual physical. Yes, I want it checked then too. It was only 21. Normal being less than 30. My PCP even put in his letter that I had that requested as well as my Vitamin D level.
I was actually told by my rheumatologist's office that having a low Vitamin D level, can be a cause for more joint pain. In my case that is true. I was in the low teen's when I was checked. I have managed to get it up to about 44 and it has made a world of difference. I even asked if we could try upping my IU's (International Units) when it was not quite were it should've been. He agreed and it finally is at a level that is comfortable. Being that I take a biologic, something we will be covering this week as well, it is important that that level not become too high. It can cause kidney or liver damage. Just because it's natural, doesn't mean you can take whatever or how much you want, without always consulting your medical provider first.
Anytime I have found something, now that I own a computer. Joined the ranks in 1999, the year that CreakyJoints was founded. A little trivia for my RA and arthritis community. Back to my research on the computer, I will go into this in detail, later this week with another prompt on biologics.
Yes, I have become that active patient. I am not afraid to ask for any test. I explain my reasoning for wanting it. My case in point I asked for a CT for my head pain, because I knew something was wrong. Never in my wildest dreams, did I ever think that a brain tumor would be found, but it was. Here we are eight years later, a brain tumor survivor. Thought I would give you a little background about the name of this blog; Brenda's Brainstorm & Trevor, who is my storyteller, for our tales.
Living with RA and becoming a BT survivor have continued to connect. This blog started as a result of my becoming a BT survivor. I am much more passionate about everything. That includes my role as an active patient. My journey continues...
Comments
Post a Comment