It is hard adjusting to live with Rheumatoid Arthritis. That isn't because we want to whine, and cry, and say woe is me. It has more to do with the fact that we never know what are limits are going to be day to day. One day I may feel great and act accordingly, but then I may pay for that for days or even weeks to come. You see one of the issues those of us with RA have is that our limits change daily. We don't know when we go to bed if we are going to be able to even get up in the morning let alone do menial tasks around the house.
A few years ago I decided to scrub the carpet at the front door way in our rental home. It was a high traffic area and the dog had, had a couple of accidents there, so I got down on my hands and knees and scrubbed. The next day I couldn't move my wrist. This was the only time in my life I had called the doc up crying because none of the pain killers I had in the house would touch the pain. I was miserable, and I was scared. That's the thing about those really bad days, we don't know how long they are going to last. Personally when I feel a flare coming on I have no idea how long I am going to be stuck in bed or on the couch. I have no idea if the pain will ever go away, I know that probably sounds melodramatic, especially to someone who doesn't have chronic pain.. Truth be told though, I don't know if the pain will stop, and when you are in the midst of a flare that has you in tears and your doctors receptionist is ignoring your calls, then you start to think of it all as a little bit hopeless. I wanted to get up and play with the kids, I wanted to be able to do my housework. I wanted to live life, I didn't want to give up. See that is something we have to face almost daily, we don't want to lose hope, but some days it is so hard to keep a grasp on that hope.
I know people who have lost relationships because of RA. I know people who have had to quit careers because of RA. I know people who have lost almost all hope because of RA, I fear that happening to me. I'm afraid of family members just getting fed up. I have been told already that I'm just being anti-social by not always coming to things. See the thing is we have gone to great lengths to make our home as comfortable as possible for me. We have central heat and air, and it is on almost 24/7/365 days a year. That is because if the humidity gets too high my RA goes crazy. It can take up to a month for me to recover from one day in the humidity and heat, likewise for the cold. We went to visit relative one year and we were told they had AC. We were meant to spend three days and nights but left after one. You see when we got there it turned out that the AC was only in one room, and it was broken. By the end of the first day my hands were so swollen that I couldn't actually get my wedding rings off and we were afraid the might have to be cut off. We avoided that by the skin of our teeth. We took the kids bowling and within 20 minutes of being back in the AC and out of the humidity I was able to get the rings back off. My husband decided we would go home as soon as we got back to the house we were staying at and pack our stuff up. Even with all that, they still don't get it, I am still making excuses and being "anti-social".
I'm afraid that one day I may start using this damn disease as an excuse to not live my life. I'm afraid that one day, it'll just be easier to give in and give up, than to press on and go forward. I have been told by others with RA that I shouldn't allow my husband to have friends over because it puts too much stress on me. How is that fair to him??? I have been told I had no business planning to make a big Thanksgiving dinner because it is too hard on me. I have also been told I shouldn't have birthday parties for the kids because again it would be too much stress on me. I never want to get to the point that I make my family quit enjoying life because I have this stupid illness. I want to try to be as fair as possible in every way. I prefer my husband to do his gaming at home, that way if I need him he's here, I know that, that isn't possible all the time so I try to be understanding. I fail there constantly and I'm afraid he will start to resent me because of it. I have asked him to let me know when I start being totally un-reasonable. I don't want my comfort to trump that of the kids and him. Let me tell you I am pretty sure I fail on that one constantly too.
I never want to let Rheumatoid Arthritis win. I never want to be the person who can't simply enjoy life because I have let some disease dictate to me what I can and can not do. That one is a hard one, because there are things I can no longer do, that I truly enjoyed. I have had to make concessions, and move on from some things. I had to give up working in my Family Daycare, simply because I could not longer pass the CPR certification, therefore I couldn't fulfil my duty of care. What I don't have to give up are my dreams and hopes for not only myself but my children. I don't have to be half a person, I just have to learn new ways. I have to be willing to rise above, and not fall. I have RA but it most certainly does not have me. I can be happy no matter what...
Tuesday, 30 April 2013
Where is my hair going???
I tried telling myself several times it wouldn't bother me. I tried, I tried, I tried!!!
The thing is...
It does bother me.
What? you may ask.
It's seems so silly to me. I feel ashamed that this bothers me, but damn it, it does bother me. I hate it... I'm losing my hair. I have always had tons of hair. It has always been fine, but I have always had LOTS and LOTS of it. So when I am in the tub or shower washing my hair, why does it bother me so much that so much of it seems to be falling out? I sit or stand there thinking, how much longer can I lose this much and still have hair left on my head? I have gotten to the point that I hate washing it, I hate brushing it, not because I don't want to take care of it, but because I hope by not messing with it, I can keep it longer. Silly thinking, I know, but don't we all do some really silly stuff in the name of vanity. Yes I admit this is probably very vain of me, but I want to keep my hair. You know when I was put on Methotrexate the whole, you may lose your hair thing, never bothered me. I was like, meh, I have plenty of it anyway, I don't have to be worried. Now I am wondering if I really did indeed have plenty, because even though it doesn't seem to be looking thinner there is so much coming out. I was crocheting a blanket the other day and thought, hmmm, I should probably apologise for all the hair I have left in this blanket. At one stage I unraveled part of it, and I had to get the scissors out to cut my hair out of part of it, it was that thick that I had to cut it out...
This is one of those completely silly things. I know in my mind I shouldn't worry about it. Oh well, I will grumble and so on, and then get over it. Yes my hair is falling out, but I am living as well as I can with an incurable disease, for which I have to be on low doses of Chemo for the rest of my life, and I am able to participate in things, even though it is only mild participation. In the grand scheme of things my hair falling out, as annoying and sad as I find it, is not a big deal at all. I will not let RA win.
The thing is...
It does bother me.
What? you may ask.
It's seems so silly to me. I feel ashamed that this bothers me, but damn it, it does bother me. I hate it... I'm losing my hair. I have always had tons of hair. It has always been fine, but I have always had LOTS and LOTS of it. So when I am in the tub or shower washing my hair, why does it bother me so much that so much of it seems to be falling out? I sit or stand there thinking, how much longer can I lose this much and still have hair left on my head? I have gotten to the point that I hate washing it, I hate brushing it, not because I don't want to take care of it, but because I hope by not messing with it, I can keep it longer. Silly thinking, I know, but don't we all do some really silly stuff in the name of vanity. Yes I admit this is probably very vain of me, but I want to keep my hair. You know when I was put on Methotrexate the whole, you may lose your hair thing, never bothered me. I was like, meh, I have plenty of it anyway, I don't have to be worried. Now I am wondering if I really did indeed have plenty, because even though it doesn't seem to be looking thinner there is so much coming out. I was crocheting a blanket the other day and thought, hmmm, I should probably apologise for all the hair I have left in this blanket. At one stage I unraveled part of it, and I had to get the scissors out to cut my hair out of part of it, it was that thick that I had to cut it out...
This is one of those completely silly things. I know in my mind I shouldn't worry about it. Oh well, I will grumble and so on, and then get over it. Yes my hair is falling out, but I am living as well as I can with an incurable disease, for which I have to be on low doses of Chemo for the rest of my life, and I am able to participate in things, even though it is only mild participation. In the grand scheme of things my hair falling out, as annoying and sad as I find it, is not a big deal at all. I will not let RA win.
Monday, 29 April 2013
One Week into CoQ10
I have been back on the CoQ10 for a week now. I can tell the difference, I really can.
I have considerable more energy. Now if only the weather would hurry up and change already so my headaches would go away. I have had one minor flare in the past week, well it was kinda minor, only involving my neck, but during it, it didn't seem minor.
I think I forgot to take it one morning and was so very tired, after thinking about that day after wards I am pretty sure I did take it, but the pain killers I ended up having to take after wards kinda negated the whole effect for me. It didn't help that I also took and hour and a half ride into the nearest city and an hour and a half back after taking it as well.
SO, I am happy that I am taking it again, and hope that the effects are more cumulative. I have to do my weekly injection tonight so tomorrow will be a good indicator of how well it is working. Especially since the kids are going back to school after a two week holiday.
Tuesday, 23 April 2013
Heroes Or Not
A while back I saw the beginning of an online argument. It was your typical, "I don't agree with you" crap. It was the subject of the argument that made me wonder though. The topic of the argument is about what makes a hero. My friend said that she had several "hero's" many of whom had RA. She was saying that the fact that they get up and do difficult things on a day to day basis to her proved that they were indeed hero's Someone said, that they disagreed with her, that "just having RA, doesn't make someone a hero." The thing is, my friend never said that, that is what she thought made those people hero's. Like my friend, I have many other friends who I consider my hero's, yes a great many of them have RA. The fact that they have RA alone makes them strong individuals, but what makes them hero's in my eyes? It is the things they do, the things that take great sacrifice and in most cases a lot of pain, that makes these people hero's to me. I have one friend who makes some of the most beautiful cakes I have ever seen, she does this despite have RA. Another that works harder than most of the "healthy" people I know. The one thing all of these people have in common is the RA. Unless you wake up daily and know that pain, you can't possibly understand what it takes to get out of bed every single day. For years I got up daily knowing, there was no cure for my disease. For years I knew that my doctors would either ignore me, or tell me there was nothing else they could do. Still I got up, I lived life, not for myself but for my children and my husband. Don't get me wrong I do not consider myself a hero, but my daughter recently did a school project about hero's a decided to use me.
I think the point my friend was trying to make is that she indeed felt that even getting out of bed on those really horrible days does not equate to being a hero. She gets out of bed to help others. She runs page upon page to make sure others have an outlet. She does it all at considerable cost to herself. Not always monetary cost either, but the cost of her emotions and the cost of her precious energy. For a person with RA energy is a rare and valuable resource. We always need more, but never even get our fair share of the stuff.
For the purposes of this blog I want to point out the definition 1,D.
In my mind you don't have to go to war to be a hero. You don't have to face a gunman and come out alive. Yeah I know extreme, but my point is that every day we are surrounded by hero's and we have no idea. Just because someone doesn't go to war, or face the gunman, or put themselves in harms way, doesn't make them any less of a hero.
So yes I do believe that the my RA Heroes are well and truly Heroes. They daily face pain that would send most people to the Emergency Department begging for relief. They face that pain, yes sometimes we all complain, but for the most part with few people knowing the true impact just walking makes upon them. I think it is extremely short sighted of anyone to say those people don't deserve the title of hero, in my mind they embody what a hero truly is. In my mind we take NOTHING away from the war hero's, the police, the firefighters by proclaiming my hero's Heroes...
Qualities associated with heros are determination, loyalty, courage, dedication, intrepidity, valor, selflessness, conviction, gallantry and the will to make sacrifices.
A hero is any person that when faced with overwhelming circumstances, rise above it and do things that ordinary people would run from.
I think the point my friend was trying to make is that she indeed felt that even getting out of bed on those really horrible days does not equate to being a hero. She gets out of bed to help others. She runs page upon page to make sure others have an outlet. She does it all at considerable cost to herself. Not always monetary cost either, but the cost of her emotions and the cost of her precious energy. For a person with RA energy is a rare and valuable resource. We always need more, but never even get our fair share of the stuff.
For the purposes of this blog I want to point out the definition 1,D.
In my mind you don't have to go to war to be a hero. You don't have to face a gunman and come out alive. Yeah I know extreme, but my point is that every day we are surrounded by hero's and we have no idea. Just because someone doesn't go to war, or face the gunman, or put themselves in harms way, doesn't make them any less of a hero.
So yes I do believe that the my RA Heroes are well and truly Heroes. They daily face pain that would send most people to the Emergency Department begging for relief. They face that pain, yes sometimes we all complain, but for the most part with few people knowing the true impact just walking makes upon them. I think it is extremely short sighted of anyone to say those people don't deserve the title of hero, in my mind they embody what a hero truly is. In my mind we take NOTHING away from the war hero's, the police, the firefighters by proclaiming my hero's Heroes...
plural he·roes
Definition of HERO
1
a : a mythological or legendary figure often of divine descent endowed with great strength or ability
b : an illustrious warrior
c : a man admired for his achievements and noble qualities
d : one who shows great courage
2
a : the principal male character in a literary or dramatic work
b : the central figure in an event, period, or movement
3
plural usually he·ros : submarine 2
See Examples of HERO
- He returned from the war a national hero.
- the hero of a rescue
- She was a hero for standing up to the government.
- His father has always been his hero.
- He has always been a hero to his son.
- A motto of his hero, Thomas Edison, is inscribed on a favorite sweatshirt : “To invent you need a good imagination and a pile of junk.” —Britt Robson, Mother Jones, May/June 2008
www.modelingfutureheroes.com/Heroes.htm
A hero deliberately and courageously overcomes obstacles for the benefit of others without regard to personal consequences.
Qualities associated with heros are determination, loyalty, courage, dedication, intrepidity, valor, selflessness, conviction, gallantry and the will to make sacrifices.
A hero is any person that when faced with overwhelming circumstances, rise above it and do things that ordinary people would run from.
raproject.org/blog/entry/what-really-is-a-hero-anyway
"True heroism is remarkably sober, very undramatic. It is not the urge to surpass all others at whatever cost, but the urge to serve others at whatever cost." .
Saturday, 20 April 2013
My Experience With Coenzyme Q10
A few weeks ago a friend of mine on Facebook posted an article on Coenzyme Q10 (CoQ10). I'll copy the article at the end of this blog with a link for it.
Basically the article says the CoQ10 can be very good in patients with Fibro. It is supposed to help with fatigue and pain levels. Apparently we all produce this antioxidant, but those of us with Firbo tend to have lesser levels, the production also declines as you age. It helps with numerous things, but notably for those with Fibro is cellular energy production.
Coenzyme Q10, also referred to as CoQ10 or ubiquinone, is a vitamin-like compound which is present in all cells. It occurs naturally in the body and is found in highest amounts in the mitochondria, where cellular energy is created. CoQ10 levels are highest in the hardest-working tissues of the body, especially the heart.
Coenzyme Q10 is an antioxidant, that is, it helps to protect cells from damage caused by the body's own free radicals. The body produces free radicals in the normal course of energy production. However as we get older our bodies generate an excess of free radicals. This can be deleterious for individuals whose bodies are not producing enough Coenzyme Q10 and other antioxidants to control these free radicals.
Usually when I see articles like this I totally ignore them. I think to myself what isn't the 10-15, depending on the day, pills I take a day enough??? SO like I said usually I just ignore and go on my way. With this particular one though I decided to read through it. Basically the only medication I am on for my Fibromyalgia is my anti-depressant, which helps with my pain levels, but not my fatigue levels. I have to say that lately my fatigue has been worse than usual. SO I decided to give this a try, and amazingly I felt so much better. It was still very hard to get out of bed, but once I got up and started moving, I felt so much better. The first thing I do is turn the kettle on for my tea, then I take the CoQ10. By the time I get home from taking the kids to school I was ready to handle what needed to be done, and not feel like I had to have a nap to accomplish something. It looked like the extra pill was making a huge difference in my life.
Well being the silly person that I am I decided to fore go the CoQ10 for a couple of weeks to make sure. I mean why pay extra for something that may not actually be doing anything? Shouldn't I try eliminating it and seeing if if was just a fluke that my energy levels had gone up? Maybe it wasn't really the new pill, but that my body had just decided to be nice to me for a change. Yeah I actually thought that, I know, INSANE... I did go a week without the CoQ10 though, and let me tell you, I WAS A HUGE MISTAKE. In the few days that I didn't take it I couldn't even drag myself out of bed. So I am back on them as of today, I am not sure how long it was before I noticed a difference before, but I thought I would chart my results this time.
Now I will say that I am only on half the dose that was used in the study, and I have noticed a big difference. After the article there are a few links on the page. One of them talks about the dosing of the CoQ10, apparently the dose has made a difference in people. The relief from fatigue seemed to start at a dose of 150mg a day.
http://www.timeforwellness.org/blog-view/coenzyme-q10-for-fibromyalgia-220
Basically the article says the CoQ10 can be very good in patients with Fibro. It is supposed to help with fatigue and pain levels. Apparently we all produce this antioxidant, but those of us with Firbo tend to have lesser levels, the production also declines as you age. It helps with numerous things, but notably for those with Fibro is cellular energy production.
Coenzyme Q10, also referred to as CoQ10 or ubiquinone, is a vitamin-like compound which is present in all cells. It occurs naturally in the body and is found in highest amounts in the mitochondria, where cellular energy is created. CoQ10 levels are highest in the hardest-working tissues of the body, especially the heart.
Coenzyme Q10 is an antioxidant, that is, it helps to protect cells from damage caused by the body's own free radicals. The body produces free radicals in the normal course of energy production. However as we get older our bodies generate an excess of free radicals. This can be deleterious for individuals whose bodies are not producing enough Coenzyme Q10 and other antioxidants to control these free radicals.
Usually when I see articles like this I totally ignore them. I think to myself what isn't the 10-15, depending on the day, pills I take a day enough??? SO like I said usually I just ignore and go on my way. With this particular one though I decided to read through it. Basically the only medication I am on for my Fibromyalgia is my anti-depressant, which helps with my pain levels, but not my fatigue levels. I have to say that lately my fatigue has been worse than usual. SO I decided to give this a try, and amazingly I felt so much better. It was still very hard to get out of bed, but once I got up and started moving, I felt so much better. The first thing I do is turn the kettle on for my tea, then I take the CoQ10. By the time I get home from taking the kids to school I was ready to handle what needed to be done, and not feel like I had to have a nap to accomplish something. It looked like the extra pill was making a huge difference in my life.
Well being the silly person that I am I decided to fore go the CoQ10 for a couple of weeks to make sure. I mean why pay extra for something that may not actually be doing anything? Shouldn't I try eliminating it and seeing if if was just a fluke that my energy levels had gone up? Maybe it wasn't really the new pill, but that my body had just decided to be nice to me for a change. Yeah I actually thought that, I know, INSANE... I did go a week without the CoQ10 though, and let me tell you, I WAS A HUGE MISTAKE. In the few days that I didn't take it I couldn't even drag myself out of bed. So I am back on them as of today, I am not sure how long it was before I noticed a difference before, but I thought I would chart my results this time.
Now I will say that I am only on half the dose that was used in the study, and I have noticed a big difference. After the article there are a few links on the page. One of them talks about the dosing of the CoQ10, apparently the dose has made a difference in people. The relief from fatigue seemed to start at a dose of 150mg a day.
http://www.timeforwellness.org/blog-view/coenzyme-q10-for-fibromyalgia-220
The first study to investigate treatment of fibromyalgia with coenzyme Q10 (CoQ10) has demonstrated improvement in major symptoms such as fatigue, pain and migraines.
Surprisingly, there are no clinical studies of CoQ10 for fibromyalgia despite evidence to suggest CoQ10 supplementation may be of benefit. However a newly published case series suggests that CoQ10 may indeed relive fibromyalgia symptoms.
Five fibromyalgia sufferers ranging from 21 to 66 years old were treated with 300 mg of CoQ10 daily given in three divided doses. All had daily episodes of intense musculoskeletal pain and fatigue, stiffness, anxiety, sleep disturbance, and depression and three of them had daily episodes of migraine. The patients were then evaluated after nine months of treatment.
CoQ10 supplementation resulted in marked clinical improvement in major symptoms including fatigue, pain and migraines. Additionally CoQ10 treatment raised blood CoQ10 levels and decreased oxidative stress.
The investigators concluded that “the results of this study indicate that oxidative stress could be implicated in the severity of the clinical symptoms in fibromyalgia and suggest that CoQ10 and antioxidant therapy needs to be examined as a treatment in fibromyalgia.”
CoQ10 is extremely safe, non-toxic and well tolerated. While further studies are needed, CoQ10 at a dose of 100 mg three times daily could be considered as a treatment option for fibromyalgia and expected to produce improvements when used over several months.
Reference:
Cordero MD, Alcocer-Gómez E, de Miguel M, Cano-García FJ, Luque CM, Fernández-Riejo P, Fernández AM, Sánchez-Alcazar JA. Coenzyme Q(10): a novel therapeutic approach for Fibromyalgia? case series with 5 patients. Mitochondrion. 2011 Jul;11(4):623-5.
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