In September of 2010 I started on Actemra. My Rheumatologist gave me a choice between Rituximab, or Actemra. After researching both I thought that Actemra was a better fit for me. In order to go onto Rituximab under the PBS in Australia you have to be on Methotrexate to take Actemra. I had, had a bad reaction to the MTX in the past so was not in a big hurry to go on it again. I figured what the hell, I am going to put off taking that crap for as long as possible. SO against her better judgement my Rheumy put me on Actemra.
I have to say that I was very nervous starting it. A good Facebook friend of mine helped me through the nerves of starting yet another new medication. Actemra was my first go with an infusion medication. During my first infusion I felt a bit nauseated and was given medication for it. So after the infusion I was tired and crashed after I got home. I was just really exhausted and wanted to sleep for a week. The next morning when I woke up I felt better than I had in years. In fact there was a stain that one of the kids had made on the carpet in my sons room. I got down on my hand sand knees and scrubbed that stain til it came up. Then I went dancing through the halls just so happy that not only did I have energy I felt fantastic. Over the next month the only pain I had was from damage that has been done from over 15 years with RA. I kept just waiting for the good feelings to wear off, and they didn't. I felt good for an entire month. SO when I went in, in October for my second infusion I was very excited.
I was started on the infusion and for the first 15 minutes everything was fine. Then I started feeling a tightness in my chest. I didn't worry about it too much but thought I should tell the doc so did. Well I told a nurse who told the doc, who then started panicking. Nothing worse to watch a doctor who is in charge of your care panic about something happening to you is NOT FUN. SO the doc in charge of the infusion room decided I had to be admitted. Then started a fight between 3 departments about what was wrong with me and why. Cardiology decided that I had a simple allergic reaction, I agreed with cardiology. Rheumatology decided that I had a heart condition. and General Medicine decided to just ignore me all together. Well during the infusion I was given an injection of Phenergen. After a fight between those departments and the Emergency Department, who refused to admit me, cause I had already been admitted through day surgery I FINALLY got a bed in the Cardiac department. Finally my old rheumy who was on the board of the hospital admitted me. On the day after the infusion I broke out in a rash on the arm that was getting the infusion. I had been pretty convinced from the day of the infusion that I had, had an allergic reaction. After I was discharged from the hospital and saw my current Rheumatologist we decided that I wouldn't try and continue on the Actemra. My Rheumatologist had looked through the research on Actemra and had found that when a woman in the US had continued on the medication after an allergic reaction and it had been fatal. I was really glad that she did the research and told me that. My old Rheumy while I was in the hospital had wanted me to continue on the medication.
We decided to do some blood work to see where my levels were. As it turned out I was feeling so good because I had gone into clinical remission while on Actemra. It was so depressing to find that out after I had been told I could no longer stay on the stuff.
Monday 28 November 2011
Wednesday 16 November 2011
The early days of my RA Journey
When I first KNEW that something was wrong with me I was 19. Now I had been sick a lot as a child. In fact I was in the doctors office every other week with an upper respiratory infection, tonsillitis, or strep throat, and an ear infection. I was there so often that my Doctor and his nurses joked that they were going to paint an examination room for me and put my name on the door. Apparently I would ask for a certain room every time. I can remember getting a shot ever visit and being put on Antibiotics. Once he even threatened to put me on a drip because he and my mom thought I wasn't eating enough.
When I was 16 I had my tonsils out and a surgery on my ear. After that every thing seemed to be going well until I was 19. I was working at Honey Baked Ham and was under a lot of stress. I had a manager that would not quit talking about the size of my breasts and whether or not I had ever had sex. It was stupidly insane, and the moment I mentioned sexual harassment the company started trying to get rid of me. I ended up quitting but the crap stayed with me for a long time. During the time my health started doing funny things. I was always tired, and ached all the time. I felt like I had a permanent case of the flu. I went to a doc and was told that she felt I was only tired and needed to go on anti-depressants. Well my mother being the wonderfully supportive person that she was hid that prescription from me. She didn't want her daughter to ever take those evil from the devil pills. People would think the wrong thing about me if I did. I got the doctor to get me a couple of weeks off of work. When I took that note in my manager, the one who was harassing me tried to refuse me the time off. He was told that legally he couldn't and I would have to be given the time off. Well they did find a way to "write me up" when I got back... I like an idiot believed a fellow employee when she told me she would do my closing duties since I had to leave at 3 instead of 5. Well she didn't and I was written up for it.
Finally like I said, I left that job, it was a nightmare anyway. I started having aches and pains, but didn't say anything cause why bother. The last time I brought it up to a doc she told me I was just depressed. Now around this time in my life I was helping to take care of my sisters oldest son. She had walked out on him and my parents kept him. I was basically the live in nanny. Fun, it was not, but it was life. Stress was the main emotion in my house. My parents were constantly fighting over my sister. I had given up going to University to help raise my nephew. I was not allowed to have a life outside the house. The one time that I tried to have lunch with a friend and go to a movie during the day I was yelled at for over an hour by my mother. She called me selfish and railed on me for ages. Why you might ask? Well because she had to drive herself the 10 minutes it took to get my nephew from school by herself. So I just lived with the symptoms of my disease. Of course at the time I didn't know much about RA. Someone had told me that you could get arthritis at a young age and you could get a blood test to see if you had it. Little did I know what was laying ahead for me. My mom and I started going to a church and I really enjoyed it. I started praise dancing and loved the friends and relationships I developed. It didn't matter to me anymore that I didn't really have a life outside of my parents. They didn't want me to and I had no way to support myself. I was lead to believe that if I did leave I would have to take my nephew with me, and I had no real skills to support us with. If I did anything wrong, my mother would go off. Once, I asked her not to speak badly about my father to me and man did I regret that. She walked half way across the parking lot we were in and yelled at the top of her lungs that I was nothing but a damn bitch who was worthless. Never before had I felt that embarrassed in my life.
Now I will admit we were going to a church that believed in the laying on of hand and prayer. I still to this day believe in prayer and my faith though battered is still alive, even if it is on life support right now. The church we were going to had a split. The pastor that we felt drawn to left and started having a Friday Night Bible Study. We went faithfully and followed him to churches that he preached at on Sundays. We did this for a long time, until he had a church invite him in to have a permanent place for his Friday Night Service. Now I loved this church, and I love the pastor and his wife to this day. Ed if you or Tina ever read this, you held me up at times that I really needed it, and I will always thank God for bringing you into my life. I had a place to dance and talk. A place where I was not looked at as a child. Every church friend until this time had known me since I was 4 and still looked at me as a child. None of them would or could see me as a young adult. Needless to say it was hard. I was helping to raise a child and had no outlet with people who thought that I was even an adult. Ed and Tina Hendrix changed that for me.
During these bible studies I was introduced to a woman who had RA. At the time I didn't know what I had such a need to pray for this woman. At every service she would be brought up and prayed for. I can remember having such a NEED to be there every time praying over her and with her. I was so deep in me that I needed to be that. Again at the time I had no idea why. She had claw hands and walked with a limp. At least that is what I remember the most about her physical proof of her RA.
SO slowly my symptoms came on. After a couple years of the fatigue and aches we were heading to Florida on a trip. Now my mother had to go on a Vacation every 4 months. It was basically the only way anyone could live with her. If we pushed that trip to 5 month between she started picking fights with my dad and refusing to eat. I remember stopping at a gas station to check the air pressure on my tires. I knelled down to check and something happened to my left knee. The pain was so intense that I very nearly passed out. It took weeks to get it back to normal where I could walk again. Then things would start happening, like I would wake up and my hand would be clawed. I would have to run it under hot water and force it open. In hindsight, that probably wasn't the best thing I could have done for my body, but I did it, time after time. I would be walking and my foot would snap or something and feel like it was broken in half. So this went on til I was 24 I think. The time lines are so fuzzy for me. I can remember once my dad looked at me and told me he thought I was just "allergic" to work. He had me take a golf cart apart and the next day I couldn't even move. In fact about 6 months went by with my not being able to get out of bad. My sister decided I needed to go to her doctor. I had no insurance and didn't want to go. Well apparently I was so bad off that my parents insisted. I told her doc about all my symptoms and he said I needed to be tested for RA. So he did the blood test. I was to go back in a week to get my results.
The day I went back for them I was made to wait for over 3 hours. I finally got so frustrated that I just left without getting my results. When I got home I called the office and spoke to the doctors nurse. I begged her for my results. She wouldn't give them to me, but after I explained that I had been there so long and still didn't know she got permission to give them to me.
There is was, I got the diagnosis of Rheumatoid Arthritis... I was pretty bad at this stage. There were things I didn't even realise. Like my parents had noticed I couldn't use my fingers very well anymore. Well my parents got home from wherever they went that fateful day. My dad sat down across from me and asked WELL. I looked at him and said "I have Rheumatoid Arthritis". I swear I will never forget the look he gave me and the sound of his voice when he said "Of course you do" anyone could tell that.
I was like, HUH, you just not two weeks ago accused me of "pretending" to be "allergic to work"
So then came living my life with a diagnosis I could do absolutely nothing about.
When I was 16 I had my tonsils out and a surgery on my ear. After that every thing seemed to be going well until I was 19. I was working at Honey Baked Ham and was under a lot of stress. I had a manager that would not quit talking about the size of my breasts and whether or not I had ever had sex. It was stupidly insane, and the moment I mentioned sexual harassment the company started trying to get rid of me. I ended up quitting but the crap stayed with me for a long time. During the time my health started doing funny things. I was always tired, and ached all the time. I felt like I had a permanent case of the flu. I went to a doc and was told that she felt I was only tired and needed to go on anti-depressants. Well my mother being the wonderfully supportive person that she was hid that prescription from me. She didn't want her daughter to ever take those evil from the devil pills. People would think the wrong thing about me if I did. I got the doctor to get me a couple of weeks off of work. When I took that note in my manager, the one who was harassing me tried to refuse me the time off. He was told that legally he couldn't and I would have to be given the time off. Well they did find a way to "write me up" when I got back... I like an idiot believed a fellow employee when she told me she would do my closing duties since I had to leave at 3 instead of 5. Well she didn't and I was written up for it.
Finally like I said, I left that job, it was a nightmare anyway. I started having aches and pains, but didn't say anything cause why bother. The last time I brought it up to a doc she told me I was just depressed. Now around this time in my life I was helping to take care of my sisters oldest son. She had walked out on him and my parents kept him. I was basically the live in nanny. Fun, it was not, but it was life. Stress was the main emotion in my house. My parents were constantly fighting over my sister. I had given up going to University to help raise my nephew. I was not allowed to have a life outside the house. The one time that I tried to have lunch with a friend and go to a movie during the day I was yelled at for over an hour by my mother. She called me selfish and railed on me for ages. Why you might ask? Well because she had to drive herself the 10 minutes it took to get my nephew from school by herself. So I just lived with the symptoms of my disease. Of course at the time I didn't know much about RA. Someone had told me that you could get arthritis at a young age and you could get a blood test to see if you had it. Little did I know what was laying ahead for me. My mom and I started going to a church and I really enjoyed it. I started praise dancing and loved the friends and relationships I developed. It didn't matter to me anymore that I didn't really have a life outside of my parents. They didn't want me to and I had no way to support myself. I was lead to believe that if I did leave I would have to take my nephew with me, and I had no real skills to support us with. If I did anything wrong, my mother would go off. Once, I asked her not to speak badly about my father to me and man did I regret that. She walked half way across the parking lot we were in and yelled at the top of her lungs that I was nothing but a damn bitch who was worthless. Never before had I felt that embarrassed in my life.
Now I will admit we were going to a church that believed in the laying on of hand and prayer. I still to this day believe in prayer and my faith though battered is still alive, even if it is on life support right now. The church we were going to had a split. The pastor that we felt drawn to left and started having a Friday Night Bible Study. We went faithfully and followed him to churches that he preached at on Sundays. We did this for a long time, until he had a church invite him in to have a permanent place for his Friday Night Service. Now I loved this church, and I love the pastor and his wife to this day. Ed if you or Tina ever read this, you held me up at times that I really needed it, and I will always thank God for bringing you into my life. I had a place to dance and talk. A place where I was not looked at as a child. Every church friend until this time had known me since I was 4 and still looked at me as a child. None of them would or could see me as a young adult. Needless to say it was hard. I was helping to raise a child and had no outlet with people who thought that I was even an adult. Ed and Tina Hendrix changed that for me.
During these bible studies I was introduced to a woman who had RA. At the time I didn't know what I had such a need to pray for this woman. At every service she would be brought up and prayed for. I can remember having such a NEED to be there every time praying over her and with her. I was so deep in me that I needed to be that. Again at the time I had no idea why. She had claw hands and walked with a limp. At least that is what I remember the most about her physical proof of her RA.
SO slowly my symptoms came on. After a couple years of the fatigue and aches we were heading to Florida on a trip. Now my mother had to go on a Vacation every 4 months. It was basically the only way anyone could live with her. If we pushed that trip to 5 month between she started picking fights with my dad and refusing to eat. I remember stopping at a gas station to check the air pressure on my tires. I knelled down to check and something happened to my left knee. The pain was so intense that I very nearly passed out. It took weeks to get it back to normal where I could walk again. Then things would start happening, like I would wake up and my hand would be clawed. I would have to run it under hot water and force it open. In hindsight, that probably wasn't the best thing I could have done for my body, but I did it, time after time. I would be walking and my foot would snap or something and feel like it was broken in half. So this went on til I was 24 I think. The time lines are so fuzzy for me. I can remember once my dad looked at me and told me he thought I was just "allergic" to work. He had me take a golf cart apart and the next day I couldn't even move. In fact about 6 months went by with my not being able to get out of bad. My sister decided I needed to go to her doctor. I had no insurance and didn't want to go. Well apparently I was so bad off that my parents insisted. I told her doc about all my symptoms and he said I needed to be tested for RA. So he did the blood test. I was to go back in a week to get my results.
The day I went back for them I was made to wait for over 3 hours. I finally got so frustrated that I just left without getting my results. When I got home I called the office and spoke to the doctors nurse. I begged her for my results. She wouldn't give them to me, but after I explained that I had been there so long and still didn't know she got permission to give them to me.
There is was, I got the diagnosis of Rheumatoid Arthritis... I was pretty bad at this stage. There were things I didn't even realise. Like my parents had noticed I couldn't use my fingers very well anymore. Well my parents got home from wherever they went that fateful day. My dad sat down across from me and asked WELL. I looked at him and said "I have Rheumatoid Arthritis". I swear I will never forget the look he gave me and the sound of his voice when he said "Of course you do" anyone could tell that.
I was like, HUH, you just not two weeks ago accused me of "pretending" to be "allergic to work"
So then came living my life with a diagnosis I could do absolutely nothing about.
Tuesday 15 November 2011
Why I hated Humira
I had the worst experience ever on Humira, so my story about it isn't a good one. Just wanted to tell everyone that upfront.
When Enbrel quit working for me the Rheumy put me on Humira. Now why she did this I will never know. I mean as she was writing the script out she was saying I really don't like having my patients on this drug. It is one I never prescribe, but she did it anyway. In fact Humira is the ONLY drug I have been on that I felt I needed to make a written list about all the side effects I was having.
I had my first Humira injection on a Wed, within 48 hours I was in pretty bad shape. I was unable to quit shaking. I literally felt like I looked like someone with Parkinson's. I called my Rheumy and she basically told me that I was wrong, this was in fact NOT a side effect of Humira, and I just needed to relax. I was horribly upset by this because Rhaine had her first ever Kindergarten Assembly. I was crushed and heart broken that I was unable to go. I called my doc who got me in for an appt within a couple of hours. My MIL came and took me to the appt. My GP whom I adore. He never blows me off and listens to what I have to say. He spent a great deal of time with me in his office researching Humira. I had been in a lot more pain since taking the shot. What we found out was that Humira in some cases can cause a clinical flare. There was nothing we could do about it other than up pain meds and just try and cope with the shaking. Over the next 4 months the shaking did quit, but that was just the beginning of my symptoms. My Rheumy continually blew me off about my side effects so the Week of my review appt I researched and came up with a list of Possible Side Effects from Humira list.
The Possible Side Effects Were:
Hives, Itching, or Skin Rash
Tingling and Numbness in extremities
Headaches and Dizziness
Abdominal Paik
Agitation
Anxiety
Sores on Breast that won't heal
Confusion
Depression
Fast/Slow/Irregular Heartbeat
Hallucinations
Headaches
Mood or Mental Changes
Source : arthritis-symptoms.com/arthritis-drugs/humira.htm
More Side Effects:
Muscle Cramps or Spasms
Night Sweats
Problems Swallowing
Trouble Thinking
Unexplained Bruising
Joint Pain.
Side Effects I had while on Humira:
Mood Swings
Irritability
Headaches
Dizziness
Involuntary Limb Movement
Petechia
Anxiety
Panic Attacks
Increased Pain
Hand and Finger Numbness
Abdominal Pain
Sores or Pimples on Breasts
Losing Words or Thoughts.
When I walked into the appt I was expecting that she would argue with me. I told her I had a list of side effects and which ones I was having. She immediately asked if the Humira was making me feel better at all. I looked at her and asked, "Well let me ask you this, according to the blood work am I even eligible to stay on this drug?" The answer was No I wasn't I wrote a journal entry after the appointment. This is what I wrote.
Wed 11 August 2010
Saw Dr Wong, Humira is not working and with my bloods & joint review I fail Medicare Standards to keep using it. She wants to put me back on MTX 7.5mg. Then if I can tolerate that well, put me on Rituximab. I have researched Rituximab and I don't want to try it. She said If I can not tolerate the MTX then my only choice is Actemra. It seems like a better option from what little research I have done. I have to be off Humira for 8 weeks to begin infusion treatment. I can double my Tramadol If I need to.
I then wrote out some research about the drugs. I won't go into that in this entry because my next entry will be about Actemra.
So when everything is said and done, Humira made me feel horrid. I was in worse shape after 4 months on it that I was after years of NO treatment at all. Everyone kept telling me I just needed to give it time. When in my heart I KNEW from the first injection that It wasn't working. I knew being as bad off as I was, was a bad thing. I didn't want to take a drug that made me miss things. To this DAY I still feel miserable about missing Rhaine's Assembly that day. She was a bear, and they did a small play about Goldilocks and the Three Bears I think. I will never get that assembly back and that pisses me off.
Monday 7 November 2011
My Enbrel Experience
My first biological drug was Enbrel. It was quite the fight to get my Rheumy to finally agree to put me on something. Here in Australia you have to show a certain percentage of improvement while on a biological drug in order for Medicare to allow you to stay on it. At the time my CRP had dropped down to about 16. My Rheumy was convinced that it would never drop lower than that, even while on a biological drug. After a month of going back and forth I finally convinced him that I needed something and he agreed to put me on Enbrel. I have to say that at the time I went on the Enbrel my CRP had gone back up to 26. I had to show an improvement of 20% within the first 5 months.
At the time I didn't know a lot about the biologicals and was absolutely terrified. After a few days of research I was ready to scream. I was convinced that Enbrel would kill me, yes funny I know. At the time though I was so desperate for some kind of relief that I just wanted something. I wanted to feel better. I am sure everyone with RA knows that feeling at some stage.
So I was approved to go onto Enbrel. When you are approved, again here in Australia, your Rheumy will call you into the office and arrange for a nurse to teach you how to do the shot yourself. At least this is how my Rheumy handles things. So I was given a few minutes of a lesson. The whole day I had managed to work myself up to quite the panic. So I gave myself my first shot, and got very light headed, my blood pressure spiked cause of how panicked the whole thing made me. Truth is I had a good experience on Enbrel. After just a couple of shots I was doing much better. My bloods improved and I was actually able to wear heels again. I know silly :-).
Now I had some negative reactions while on Enbrel. I had such bad migraines that I was ready to call it quits on the drug and go on my merry way. My husband convinced me that I should try and stick it out. I called the Rheumy who told me the headaches would be self regulating and I would most likely get used to everything. She didn't listen to what I had to say and I was left feeling pretty frustrated. In the end the headaches did ease up some, and honestly it probably was worth it to have some time while I was able to be somewhat normal. After about nine months on it though it quit working.
So in a nutshell I had a fairly good experience but it didn't work for long. And really the only bad or negative side effect I had was the migraines. I also gained some weight while on the drug. I am not sure how that happened since I was eating a whole lot but I did stack on about 10 Kilos.
http://www.enbrel.com/index.jspx
http://www.drugs.com/sfx/enbrel-side-effects.html
I listed two web pages you can go to visit for information.
At the time I didn't know a lot about the biologicals and was absolutely terrified. After a few days of research I was ready to scream. I was convinced that Enbrel would kill me, yes funny I know. At the time though I was so desperate for some kind of relief that I just wanted something. I wanted to feel better. I am sure everyone with RA knows that feeling at some stage.
So I was approved to go onto Enbrel. When you are approved, again here in Australia, your Rheumy will call you into the office and arrange for a nurse to teach you how to do the shot yourself. At least this is how my Rheumy handles things. So I was given a few minutes of a lesson. The whole day I had managed to work myself up to quite the panic. So I gave myself my first shot, and got very light headed, my blood pressure spiked cause of how panicked the whole thing made me. Truth is I had a good experience on Enbrel. After just a couple of shots I was doing much better. My bloods improved and I was actually able to wear heels again. I know silly :-).
Now I had some negative reactions while on Enbrel. I had such bad migraines that I was ready to call it quits on the drug and go on my merry way. My husband convinced me that I should try and stick it out. I called the Rheumy who told me the headaches would be self regulating and I would most likely get used to everything. She didn't listen to what I had to say and I was left feeling pretty frustrated. In the end the headaches did ease up some, and honestly it probably was worth it to have some time while I was able to be somewhat normal. After about nine months on it though it quit working.
So in a nutshell I had a fairly good experience but it didn't work for long. And really the only bad or negative side effect I had was the migraines. I also gained some weight while on the drug. I am not sure how that happened since I was eating a whole lot but I did stack on about 10 Kilos.
http://www.enbrel.com/index.jspx
http://www.drugs.com/sfx/enbrel-side-effects.html
I listed two web pages you can go to visit for information.
Thursday 3 November 2011
Sometimes we don't realise it
That is my motto with my medication's at the moment.
I didn't realise how much Orencia was helping me until I was 3 weeks overdue for an infusion. My pain levels went up so high during that three weeks, which surprised me, but not nearly as much as my fatigue levels. I got that I didn't have to take so many naps during the day on the Orencia, but I so didn't get that I wasn't dragging through the day anymore.
It just goes to show you that sometimes we just don't see how much something is helping us, until it is gone that is.
I hear so many people complain about the side effects of the medicines, or that they just don't work. When for me at least, sometimes the changes happen so gradually that they are really hard to notice, but they are there.
I know that those of us with RA get to a stage where we just want things to work, but in reality 6 months or so, isn't really that long when we are talking about a disease we will be dealing with for the rest of our lives. I do understand wanting to feel better, believe me I do. I understand wanting our old lives back. I think sometimes we look back and not forward. We have an incurable destructive disease. That disease does not have to take our futures though. Yes it will likely change our futures. I can no longer work, and I really enjoyed the work I did. When I had to quit I had my own home based family daycare. I love children, love being surrounded by them, but I did have to quit. In the year that I was working my disease advanced very quickly. I had more damage in that year than I did the few years before it. So I made the best decision I could for my family and my health I quit. I took a good long look at my life and realised that I wanted to be able to enjoy my life. Yes I loved working but it was taking a toll on me. One I didn't really see till after the damage was done. Since I have quit working and moved and have less stress, physically I am doing so much better. Yes I have daily pain, yes I have permanent damage, but I have my life. My outlook as well as my future have changed. I see the beauty in life without the rush to get things done. No I will never get to go rock climbing and explore caves. I most likely won't get to ever go swimming in the gulf of the coast of MS with the dolphins. I will never get to explore the mountains and the trails n TN in the Smoky Mountain National Park. Those things don't mean I can't enjoy my life though, cause I can still watch the sun rise and set. I can still take the time to watch the leaves fall and regrow. I can notice the trees flowering. Sad thing is I never in the first 30 years of my life noticed that. Seriously until I moved to Australia and settled in I never noticed or saw the beauty of the changing seasons.
I guess what I am trying to say is that maybe we need to try and take the time to notice and see the things we normally wouldn't
I didn't realise how much Orencia was helping me until I was 3 weeks overdue for an infusion. My pain levels went up so high during that three weeks, which surprised me, but not nearly as much as my fatigue levels. I got that I didn't have to take so many naps during the day on the Orencia, but I so didn't get that I wasn't dragging through the day anymore.
It just goes to show you that sometimes we just don't see how much something is helping us, until it is gone that is.
I hear so many people complain about the side effects of the medicines, or that they just don't work. When for me at least, sometimes the changes happen so gradually that they are really hard to notice, but they are there.
I know that those of us with RA get to a stage where we just want things to work, but in reality 6 months or so, isn't really that long when we are talking about a disease we will be dealing with for the rest of our lives. I do understand wanting to feel better, believe me I do. I understand wanting our old lives back. I think sometimes we look back and not forward. We have an incurable destructive disease. That disease does not have to take our futures though. Yes it will likely change our futures. I can no longer work, and I really enjoyed the work I did. When I had to quit I had my own home based family daycare. I love children, love being surrounded by them, but I did have to quit. In the year that I was working my disease advanced very quickly. I had more damage in that year than I did the few years before it. So I made the best decision I could for my family and my health I quit. I took a good long look at my life and realised that I wanted to be able to enjoy my life. Yes I loved working but it was taking a toll on me. One I didn't really see till after the damage was done. Since I have quit working and moved and have less stress, physically I am doing so much better. Yes I have daily pain, yes I have permanent damage, but I have my life. My outlook as well as my future have changed. I see the beauty in life without the rush to get things done. No I will never get to go rock climbing and explore caves. I most likely won't get to ever go swimming in the gulf of the coast of MS with the dolphins. I will never get to explore the mountains and the trails n TN in the Smoky Mountain National Park. Those things don't mean I can't enjoy my life though, cause I can still watch the sun rise and set. I can still take the time to watch the leaves fall and regrow. I can notice the trees flowering. Sad thing is I never in the first 30 years of my life noticed that. Seriously until I moved to Australia and settled in I never noticed or saw the beauty of the changing seasons.
I guess what I am trying to say is that maybe we need to try and take the time to notice and see the things we normally wouldn't
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