Lesson Learned Category
Thursday, August 13th, 2009
Becoming your own health advocate can sound like a daunting task, but it really is an important part of taking control of your disease. No one knows your body better than you do. It is up to you to communicate what is going on with your doctor(s) and other health care professionals. One of the most important things that you can do for yourself in taking charge of your health care is to find a doctor that you feel comfortable with. Find one that listens to what you are telling them and respects you. If you don’t feel your doctor is listening to you and respecting you, it may be time to look for a new one. They are supposed to be working for you in your best interest, if you feel that they aren’t, find a new one.
Once you feel comfortable with your choice of doctor, the next important step is to be prepared. Do some research on your condition. Make a list of questions to bring with you to the doctor’s office. List the questions in order of importance to you.
Bring a note pad with your questions to the doctors office with you. Ask questions and write down the doctor’s answer. It’s really easy to forget what the doctor said when you are sitting there in a paper dress. If additional testing is needed, ask why and how the procedure will work. Most importantly, make sure that you understand the answer to your questions. If you don’t understand, make sure to communicate that with the doctor so that they can explain things in a way that you can understand.
Keep a health journal. Log how you are feeling from day to day. Write down any changes to your diet or medications. Report to the doctor anything that is out of the ordinary. Keep a record of all the medications that you are taking and from which doctor. If another doctor or specialist changes your medication or you start taking any supplements, write it down to share at your next visit.
Don’t be afraid to get a second opinion. Or even a third opinion if necessary. This is your body and your good health. It is up to you to make sure that the professionals that you see are working with you to maintain your health.
Tags: advocate, arthrtiis, communicate, doctor, health, journal, prepare, question, RA, rheumatoid, rheumatoid arthrits
Posted in Autoimmue Disease, Decisions, Lesson Learned, Rheumatoid Arthritis RA, Solutions | 4 Comments »
Wednesday, August 5th, 2009
The other day I was driving to have yet another blood test done and my thought was” I really just don’t have time for RA right now”. How ridiculous is that! As if I really had any choice about having this disease and I could actually just put off having it for a while ’til I had time to deal with it. My next thought was “This disease is really inconvenient.” I had to laugh at that thought, but is so true. RA takes me away from what I would rather be doing quite a lot. Between the blood work and the diagnostic test and the doctors visits, it seems like every time I turn around I am interrupting something that I would rather be doing to deal with a RA related appointment.
I did a little math. If everything is going well and no additional testing is needed I visit some health related office 34 times a year. That is almost 3 times per month. No wonder why I feel like RA is getting in the way sometimes. It is.
I started to try to remember what life was like before rheumatoid arthritis . I was thinking what I could be doing instead of having more blood work done. And then I thought, STOP! What was I doing. This is not going to help me. Yes, RA is inconvenient. Yes, rhematoid arthritis interrupts many aspects of my life. But this is the life that I have now. These are the cards that I have been dealt. This is my reality and like it or not that means that I need to schedule in more health appointments than most people. Is that the worst thing in the world? Absolutely not.
So yes I am inconvenienced by rheumatoid arthritis. But I still wake up every morning and I spend my every day with the people that I love most in this world. Because of RA our lives are different than we had planned. That does not mean that our lives are better or worse than we had planned, it just means that our lives are different.
Tags: appointment, arthritis, diagnostic, disease, RA, rheumatoid, Rheumatoid Arthritis RA, test
Posted in Autoimmue Disease, Decisions, Lesson Learned, Rheumatoid Arthritis RA, Solutions, Spirit | 5 Comments »
Monday, July 27th, 2009
As some of you may know, the past few months it has been one thing after the other around here. We had one person after the next with the swine flu; all the while I have been dealing with the effects of lyme disease and rheumatoid arthritis with no RA meds. The doctor took me off the medication so that the Tamiflu stood a chance of helping get rid of the H1N1 virus that had overtaken my house. All that was fine and as far as I can tell worked well, but the consequence of all this is that my hands are really swollen and painful once again. On top of my hands being swollen, painful and holding on to anything is next to impossible, the effects of the lyme disease have left me with unbelievable fatigue and muscle soreness.
I have done my best to just accept that for the time being this is what my reality is and I know that it is a temporary situation. I am usually pretty good at dealing with this sort of thing because I know that it is out of my hands. There is only so much I can do right now. I am drinking water like it is going out of style. I am staying away from my known trigger foods and Lord knows I have been getting a lot of sleep. I have been meditating and exercising the joints that aren’t painful. I am doing everything I know to do to improve the quality of my life and yet it is still very hard.
Yesterday I fell apart. I am really not sure exactly what set me off. Was it my husband asking “Why are your hands so swollen?” which to me seemed like the dumbest question ever. Was it when my son innocently asked me to play a game of badminton outside with him? I would have loved to play but my hands couldn’t grip the racket. Was it when I was attempting to make breakfast and I couldn’t even crack the eggs and needed to ask for help? Maybe it was all of that and more. I suppose it really doesn’t matter what set me off, but I just started crying.
What started as a trickle streaming down my cheek turned out to be an all out torrent of tears. For the next hour I cried, I blubbered, I wept and I felt really sorry for myself. This disease is so hard, sometimes harder than I can often put into words. It takes me away from all that I want to do sometimes. It is painful and when I am in pain I am not my real self. It distracts me from what I truly want to be doing. Sometimes, and yesterday in particular, it feels like it is something separate from me that is demanding my focus, demanding my attention. Like a spoiled child that will do whatever it takes to get what it wants. And so with my mounting frustration and anger and pain, I cried. And I cried. And I cried. And then I cried some more.
And when I had gone thought the better part of a box of tissue and I felt as though I had no more tears I cried a little more. After a good long time of wallowing in my self pity, I started to feel better. I really think I just needed to get rid of some of the frustration and anger and sadness. I felt it all and had cried it all out of me. I can’t begin to express how much better I feel.
My hands are still swollen and I am typing this with three fingers, but I feel so much better. I had forgotten that when the disease was new and the emotions that come with it were new, every once in a while I would have a good old fashioned pity party. I wouldn’t want it to be a very long party, but every once in a while, when the disease got the better of me I would just let it all out and I always felt better. I wanted to share this so if you are feeling like I did maybe a good cry will help you feel better like I do.
Tags: anger, arthritis, ask for help, cry, disease, fatigue, flu, focus, frustration, H1N1, pain, painful, rheumatoid, Rheumatoid Arthritis RA, sadness, self, soreness, swine flu, swollen, Tamiflu
Posted in Autoimmue Disease, Decisions, Lesson Learned, Rheumatoid Arthritis RA, Solutions, Spirit, Wellness | 12 Comments »
Thursday, July 9th, 2009
I had planned on doing an update on any news regarding the swine flu for a while now. I planned on keeping up to date on the spread of the virus and certainly a reminder update when it got closer to flu season for those of us in the Northern Hemisphere. What I hadn’t planned on was the swine flu hitting my home so soon. As of the writing of this post we have been dealing with the swine flu for 10 days now. This morning”s paper announced that another Rhode Islander has fallen victim to this virus. We are told that she had an “underlying medical condition”.
Late Sunday afternoon a week ago my 9 year old son Kevin started to get quiet. He was just not is usual bubbly self. He is normally a very active chatty boy. My little firecracker. He started slow down quite a bit and I even found him sound asleep in the middle of the day. Not at all like my Kevin. My motherly instinct new that something wasn’t right. As the day wore on he seemed to lose his appetite and was way too quiet. His color was off, he looked pale to me.
Later Sunday evening I went in to check on him and he felt really worm. I took his temperature and it read 104. Not a number I am comfortable with, but Kevin is my third child and I have seen dozens of times when one of the kids would spike a temperature only to have it go back down 24 hours later with no explaination. I knew what I needed to do. I gave him some ibuprofen and put a cold compress on him and gave him plenty of fluids. The ibuprofen seemed to bring the temperature down but only down to 100.2. I knew then it would be a long night. Every hour I checked his temperature, made sure that I kept a cool compress on him and watched and naturally worried. He seemed to be out of it the next morning, but then again Mom had been into bother him many times the night before.
First thing the next morning I started asking questions, Does anything hurt? Do you feel achy? Do you have a head ache? He said no he just felt cold. I suspected that was his fever that was making him feel cold. I continued to monitor him and by the end of the day his fever seemed to have broken and I thought it was just one of those 24 hour things that kids get.
Boy o boy was I wrong .
The next few days he had no fever or aches or pains just coughing and coughing and more coughing, post nasal drip and stuffy head. Night after night coughing all night long. He had no appetite but I was grateful that he was drinking plenty of fluids. Although I was not happy about his cough I was not overly concerned by it either. I gave him some cough medicine. I thought that he had caught a summer cold.
Then late Thursday evening he started with another fever. This time the fever was only 102. I knew at this point it was neither just a cold nor a 24 hour thing. He needed to see a doctor. This thing was not getting better on its own and now he’s got fever number 2. The first thing Friday morning I called the pediatrician’s office. We were lucky and got a 10:00am appointment. On the way there Kevin starts telling me how much better he is feeling. I still wanted the doctor to take a look at him.
We got into to see the doctor and after a thorough check up he announces that Kevin has all the symptoms of the swine flu. He tells me that he is seeing a dozen cases every day and they all seem to follow the same pattern. Initially a really high temperature that seems to pass after about 24 hours followed by cold like symptoms and then a secondary fever with contiunuing cold like symptoms. He even had one patient in the hospital with this virus. He also tells me that the state is not testing anymore because it is too expensive for so many mild cases of this virus. He said that the only time that the state would test is if the patient ended up with complications that cause them to end up in the hospital. He then tells me that Kevin has seen the worst of it and there is really nothing to do but keep an eye on him and if he gets worse come back in, but he didn’t anticipate that happening.
I actually asked the doctor if he was sure that it was the swine flu. I just couldn’t believe what I was hearing. After the shock wore off I asked the doctor if I should be concerned because of the medication I take for my RA. He suggested that I call my rheumatologist immediately which is exactly what I did. She put me on tamiflu for ten days and wanted immediate blood work done to check on my white blood count..
While we have spent the better part of 2 weeks now coughing and sneezing with tissues galore in my house, this was according to the doctor a really mild case of this H1N1 flu virus. The doctor’s say that we are actually lucky to have caught this virus now when the symptoms are mild so that our bodies have the chance to build up a resistance to this virus come flu season. I want everyone reading this to know I am very concerned how bad this will be during flu season. If what we have experienced is mild I for one cannot imagine what severe of even a normal case of this virus is like. When the flu vaccine is available I would suggest that everyone get it. You do not want to get this virus.
Tags: ache, arhtirtis, autoimmune, fever, ibuprofen, medication, RA, rheumatoid, Tamiflu
Posted in Autoimmue Disease, Decisions, Health/Fitness, Lesson Learned, News, Rheumatoid Arthritis RA, Solutions, Wellness | 9 Comments »
Wednesday, June 24th, 2009
I have watched the Star Wars movies over the years many times. At one time or another each one of my boys has gone through a Star Wars faze when they want to watch all of the Star Wars movies over and over again. I have seen them all many times. The past few times I have to admit I probably was doing something else while one of the boys was watching. Kind of a been there done that attitude. They are all good movies but my attitude was I know how it all ends so maybe I’ll direct my attention to other things while he (which ever boy that may be at the time ) enjoys the movie. This morning was no different when the sky was gray and it was still raining outside my youngest, Kevin asked if he could watch Star Wars – Episode I – The Phantom Menace. Not a problem. In the movie went. My thought was the house will be quiet for a few hours with the two younger boys being separated while Kevin watches this movie.
I was sitting in the room with him paying some bills and tending to some email’s that needed my attention when I heard the most profound words…..The character Qui Gon is speaking to Anikan Skywalker and he says “Just remember, your focus determines your reality”. I stopped what I was doing and just sat there. I repeated the words “your focus determines your reality” All I could think at the time was. Yes. That’s it. That is exactly what has happened for me.
There was a time in the early days of the disease when my focus was on my limitations . That was all I could see, what I could no longer do. I spent a great deal of time feeling sorry for myself and worrying if I would end up in a wheelchair or bed-ridden. It was a really dark period of time for me and the more that I focused my energies on fear and pain the worse it seemed to get. I had very little confidence in my rheumatologist at the time and it certainly didn’t help my state of mind whenever I questioned him about my course of treatment he would say things like “We don’t want to see you in a wheelchair, do we? He seemed to be echoing my worst fears.
I took me several years to work up the courage to take my life back. I read really good books that helped to change my perception of myself. I did something that at the time was very uncomfortable for me and accepted help from anyone and everyone who offered it. I slowly changed my thinking from what I could no longer do to what I can still do. Every day I had to make a conscience effort to focus on the good in my life so that goodness started to become my reality.
It was not an easy transition. I had to take a hard look at what was really important to me and I had to address what it would mean if my worst fears were realized. Would it change who I am as a human being if I did end up in a wheelchair? It would certainly change my reality. Things would be very different for me and my family. But would I as a woman, as a mother, as a life partner be different? The answer came back yes and no. Physical changes would limit my ability to do things and because of that my life would change, but fundamentally who I am would not. I would still love my family with abundance and still share with them all my joy and happiness. And when I really, really thought about it I came to realize that this body, my body, is just a vessel. Sometimes it is a little rough around the edges but still just a vessel housing the who that I am. And most importantly I am so much more than this body that I have been given.
I still wake up every morning stiff and sore. But my immediate thoughts are not on how the stiffness will limit my day. My first thoughts are what will today bring? What is on the agenda for the day? Where is my husband so I can give him a kiss? What a nice morning hug from my Kevin that was. Most importantly I am so grateful for having been given this day. It has made monumental effects on my life and how I live it.
Tags: arthritis, courage, focus, limitations, Phantom Menace, rheumatoid, rheumatologist, Star Wars, stiffness
Posted in Decisions, Good News!, Lesson Learned | 11 Comments »
Friday, June 12th, 2009
Sometime no matter what I eat, and how much I rest and try to do all the right things that I know that I should to help alleviate the symptoms of rheumatoid arthritis, it just gets the better of me. It has been a while since I have felt like myself. The self that lives inside of me. I am fatigued and my hands are really hurting these days. I know that this is only a temporary thing. I have been riding this rheumatoid arthritis roller coaster long enough to know that everything with this disease is temporary. Right now I just need to take care of myself and rest. I need plenty of water and more rest.
The fighter in my wants to do what I want to do, like work on my blog and countless other things that bring me pleasure, no matter how I am feeling and RA be damned. But I know that cannot happen right now. Fortunately for me I have learned the lesson a while ago and I really just need to rest. I need to listen to what my body is yelling at me and just do nothing until I start to feel better. I am hoping that we will have a break in this weather pattern we have been in that has been adding to my discomfort soon. Until then I am going to take my own advise and rest.
Tags: arthritis, discomfort, rest, Rheumatoid Arthritis RA
Posted in Decisions, Health/Fitness, Lesson Learned | 4 Comments »
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