Here I am, yet another FMLA day. I go to my Dr tomorrow and I have the medical leave form in my purse for him to fill out. I'm not totally ready to admit defeat so I think I will ask him to put 90 days on my form in hopes that Simponi will kick in. If that 90 days doesn't show improvement I will concede to my fate and start the SS disability process. I am so fortunate my employer offers disability options that allow for a cushion between working and starting SS disability. I don't know what I would do without it.
Now I'm sitting in bed, tiger balm coating my lower back, knees and feet. If I put my head under the covers for long it's like a Vick's vapor cloud taking over. At least my sinuses will be nice and clear.
Hope everyone has a good day! Since many of my readers are chronic pain people too, here's to minimal pain for at least part of your day!
Showing posts with label FMLA. Show all posts
Showing posts with label FMLA. Show all posts
Tuesday, October 9, 2012
Thursday, October 4, 2012
Rub a dub dub, I'm blogging from the tub.
Yes, today's blog is brought to you live from my bathtub Today was the second day I have had to come home because of arthritis. My knees, feet, hands and back are the culprits today. My hips hurt as well, but it feels more like that is bursa related than arthritis related. It's sad I've had these afflictions long enough to actually be able to differentiate types of pain. I've been passing a lot of time this afternoon reading some older posts on Inspire.com and a constant theme, especially with the Psoriasis group, is the food vs medicine debate. Some posts are nearly fanatical about it.
I thought I would give some of my personal experience in that area. Having had psoriasis as long as I have, I have probably tried just about every OTC, prescription, and alternative method I've ever read. I have done many of them for PA as well, but it's still in the trial and error phase even with almost a decade of affliction.
I'll start with some background. I was diagnosed with psoriasis in 1998 after a bad reaction to taking the Anthrax vaccine while in the Army caused my immune system to go into hyper drive. At that time there was still very little known about psoriasis to include causes and treatments. The general route of care was topical agents such as lotions and steroid creams. Occasionally for a particularly bad flare up a steroid shot would be administered. Tar was a big seller to the psoriasis crowd and it did give many people, myself included, some relief. At the time I was diagnosed I had a pretty healthy diet and I exercised more than regularly. I did smoke a lot and drink alcohol regularly.
So there you have the beginning of the journey which I will be on for the rest of my life. I couldn't give you names of all the prescription topical treatments I have tried. If it's out there and legal I have been prescribed it and used it. I have been on every biological available for Psoriatic Arthritis. Enbrel worked awesome on my psoriasis (didn't have arthritis diagnosed yet at that time), but it depleted my immune system so much that I went from never getting sick to pneumonia that took me out for 2 weeks and getting every cold and viral malady that passed within 100 feet of me. Methotrexate worked well on it's own and in combination with Remicade, but started making me very sick so I quit taking it. I had a really good 5 year run on Remicade and it stopped working on my joints so I decided that the benefits no longer outweighed the risks. I was biological free for a little over a year and sustaining some level of comfort some of the time with Vicodin. Then my arthritis kicked into high gear. I tried a run with sulfasalazine to avoid going onto Biologicals again, but it did nothing. Tried methotrexate again, but I was living next to the porcelain god for at least 24 hours after taking my shot from that. My skin was already thrashed and cracking, but the arthritis attack was what sent me back to biologicals. Humira started working on my skin almost immediately, but about a week into it I started losing hair by the handful, getting mouth sores so severe it felt like I had been eating glass, developed hives and some other rather nasty side effects. My Dr took me off that and now I am on the last hope which is Simponi. My side effects have been generally mild, nausea, dizziness, but I have also not had any improvement of my psoriasis or arthritis. The psoriasis is actually worse than when I started. I have resorted to using a topical steroid to get minimal relief from the cracking and bleeding, but I itch like I've been rolling in poison ivy. I also got a TDAP vaccine which took me out for most of a week from work because of getting almost all of the potential "mild" side effects. Mild my ass! I think that pretty much covers the pharmaceutical side of things.
In this whole process I have tried the holistic treatments with mixed results. Dead sea salt, occlusion with natural nut butters and oils, high doses of vitamin and mineral supplements, and food exclusion. I am very fortunate to have a forward thinking Rheumatologist who is willing to work with the treatments you want to pursue. He is knowledgeable of both pharmaceutical and holistic treatments out there and even has some alternative treatments he'll let people like me who are at the last option try.
As for diet I've tried most of those too. I've done paleo, juice fast, all whole foods, all raw foods, exclusion, and many more. For me I don't seem to have food triggers. I do feel better when I eat a well rounded diet with minimal processed foods. I try to stick with organics, local meats, produce, dairy and honey. I love food so for me turning what is available to me into something fantastic is an adventure. It doesn't however improve my psoriasis or my psoriatic arthritis.
To the people out there who swear by diet controlled psoriasis, I am so glad that you have found relief. Perhaps though the reality is that your psoriasis is just like the rest of us in that it is immune related and you are ALLERGIC to foods. Rather than hives or stomach upset your immune system responds with psoriasis. Each of us with psoriasis and psoriatic arthritis have some reason that our immune system has begun to attack us. Not all of us are food. That some of us are food issues is really a blessing.
At the end of the day my take on drugs vs food is that both are vitally essential for us to live the best life we can. You have to feed your body healthy food to be as healthy as you can be. For some, like me, being healthy as we can be still means arthritis flares (and arthritis all the time) and psoriasis everywhere.
I thought I would give some of my personal experience in that area. Having had psoriasis as long as I have, I have probably tried just about every OTC, prescription, and alternative method I've ever read. I have done many of them for PA as well, but it's still in the trial and error phase even with almost a decade of affliction.
I'll start with some background. I was diagnosed with psoriasis in 1998 after a bad reaction to taking the Anthrax vaccine while in the Army caused my immune system to go into hyper drive. At that time there was still very little known about psoriasis to include causes and treatments. The general route of care was topical agents such as lotions and steroid creams. Occasionally for a particularly bad flare up a steroid shot would be administered. Tar was a big seller to the psoriasis crowd and it did give many people, myself included, some relief. At the time I was diagnosed I had a pretty healthy diet and I exercised more than regularly. I did smoke a lot and drink alcohol regularly.
So there you have the beginning of the journey which I will be on for the rest of my life. I couldn't give you names of all the prescription topical treatments I have tried. If it's out there and legal I have been prescribed it and used it. I have been on every biological available for Psoriatic Arthritis. Enbrel worked awesome on my psoriasis (didn't have arthritis diagnosed yet at that time), but it depleted my immune system so much that I went from never getting sick to pneumonia that took me out for 2 weeks and getting every cold and viral malady that passed within 100 feet of me. Methotrexate worked well on it's own and in combination with Remicade, but started making me very sick so I quit taking it. I had a really good 5 year run on Remicade and it stopped working on my joints so I decided that the benefits no longer outweighed the risks. I was biological free for a little over a year and sustaining some level of comfort some of the time with Vicodin. Then my arthritis kicked into high gear. I tried a run with sulfasalazine to avoid going onto Biologicals again, but it did nothing. Tried methotrexate again, but I was living next to the porcelain god for at least 24 hours after taking my shot from that. My skin was already thrashed and cracking, but the arthritis attack was what sent me back to biologicals. Humira started working on my skin almost immediately, but about a week into it I started losing hair by the handful, getting mouth sores so severe it felt like I had been eating glass, developed hives and some other rather nasty side effects. My Dr took me off that and now I am on the last hope which is Simponi. My side effects have been generally mild, nausea, dizziness, but I have also not had any improvement of my psoriasis or arthritis. The psoriasis is actually worse than when I started. I have resorted to using a topical steroid to get minimal relief from the cracking and bleeding, but I itch like I've been rolling in poison ivy. I also got a TDAP vaccine which took me out for most of a week from work because of getting almost all of the potential "mild" side effects. Mild my ass! I think that pretty much covers the pharmaceutical side of things.
In this whole process I have tried the holistic treatments with mixed results. Dead sea salt, occlusion with natural nut butters and oils, high doses of vitamin and mineral supplements, and food exclusion. I am very fortunate to have a forward thinking Rheumatologist who is willing to work with the treatments you want to pursue. He is knowledgeable of both pharmaceutical and holistic treatments out there and even has some alternative treatments he'll let people like me who are at the last option try.
As for diet I've tried most of those too. I've done paleo, juice fast, all whole foods, all raw foods, exclusion, and many more. For me I don't seem to have food triggers. I do feel better when I eat a well rounded diet with minimal processed foods. I try to stick with organics, local meats, produce, dairy and honey. I love food so for me turning what is available to me into something fantastic is an adventure. It doesn't however improve my psoriasis or my psoriatic arthritis.
To the people out there who swear by diet controlled psoriasis, I am so glad that you have found relief. Perhaps though the reality is that your psoriasis is just like the rest of us in that it is immune related and you are ALLERGIC to foods. Rather than hives or stomach upset your immune system responds with psoriasis. Each of us with psoriasis and psoriatic arthritis have some reason that our immune system has begun to attack us. Not all of us are food. That some of us are food issues is really a blessing.
At the end of the day my take on drugs vs food is that both are vitally essential for us to live the best life we can. You have to feed your body healthy food to be as healthy as you can be. For some, like me, being healthy as we can be still means arthritis flares (and arthritis all the time) and psoriasis everywhere.
Wednesday, August 22, 2012
I got a new drug.
So in the last 24 hours I have gotten the Simponi approved and received my first dose from the UPS guy. I will be taking it tomorrow so fingers crossed! I also got my FMLA approved. Now I will probably lose about 20% of my income because I don't get paid for FMLA days, but I also won't get fired for my absences. 80% of something will always be better than 0% of nothing, right? Also if I'm making 20% less my kids might actually qualify for some federal student aid. LET'S GO PELL GRANT!
This week has been a pretty moderate pain week thankfully. I haven't needed a vicodin since Monday. Now this isn't to say that I'm not in pain. It just means my pain levels are manageable without narcotics for now. Something I have found people who don't have chronic pain can't wrap their minds around is how people with chronic pain perceive pain. I personally haven't had a day without pain in so long that I can't remember what it was like to be pain free. People in my life will frequently ask me if I'm in pain. If I answer honestly my answer would always be yes. What doesn't factor into the black and white answer is the fact that when you have chronic pain you learn to have a level of "acceptable" pain. It's still pain, but you don't really register it anymore unless you focus on it. It's like if you work in a building that has a piece of machinery with a constant hum. Do you hear it? Yes, if you think about it and acknowledge it you hear it, but on a day to day basis you learn to kind of ignore it and it just becomes that white noise you don't really hear anymore. This is part of the reason that having mental coping mechanisms can be so important. It can be a quick flush down the toilet of life if you let the pain be a focus for too much of the time. It can become all consuming. It can drive you to being mentally ill on top of physically ill. It's a delicate dance to manage your pain, your mental health, be mindful of your medications and their side effects and living a somewhat normal, all be it adjusted, life.
As I've said before reading is one of my coping activities. I also practice that deep breathing "in through the nose, out through the mouth" used in both Lamaze and yoga. Funny both those things use that breathing practice as my experiences with both have had extreme and painful results afterward. Anyway, know your comfort positions. Mine change over time and depend on the particular joints having a bad day. When it was just my hips I would sit kind of Indian style and then lay back. This stretched out my hip flexors and forced my back into a more comfortable arch. I could sit like that and day dream for a good hour at a time. Yes I looked a bit crazy dropping down on my coat on the floor of the airport, but it sure felt a lot better, and those long boring layovers were much more tolerable. Laugh. This one is a universal mood enhancer. I'm blessed with the ability to find humor in the not humorous. Much to the dismay of many people around me who find it impolite, but none the less there has to be a reason for inappropriate humor. Maybe my arthritis is the reason. No matter what's going on I can usually find something humorous and inappropriate to say or think.
So to end today's blog I'm asking everyone to keep their fingers crossed that not only does Simponi help my arthritis and my psoriasis, but that it doesn't bring on the side effects from the depths of hell. I'll take a few minor ones, but I'd rather not gargle glass, be bald or get pneumonia.
This week has been a pretty moderate pain week thankfully. I haven't needed a vicodin since Monday. Now this isn't to say that I'm not in pain. It just means my pain levels are manageable without narcotics for now. Something I have found people who don't have chronic pain can't wrap their minds around is how people with chronic pain perceive pain. I personally haven't had a day without pain in so long that I can't remember what it was like to be pain free. People in my life will frequently ask me if I'm in pain. If I answer honestly my answer would always be yes. What doesn't factor into the black and white answer is the fact that when you have chronic pain you learn to have a level of "acceptable" pain. It's still pain, but you don't really register it anymore unless you focus on it. It's like if you work in a building that has a piece of machinery with a constant hum. Do you hear it? Yes, if you think about it and acknowledge it you hear it, but on a day to day basis you learn to kind of ignore it and it just becomes that white noise you don't really hear anymore. This is part of the reason that having mental coping mechanisms can be so important. It can be a quick flush down the toilet of life if you let the pain be a focus for too much of the time. It can become all consuming. It can drive you to being mentally ill on top of physically ill. It's a delicate dance to manage your pain, your mental health, be mindful of your medications and their side effects and living a somewhat normal, all be it adjusted, life.
As I've said before reading is one of my coping activities. I also practice that deep breathing "in through the nose, out through the mouth" used in both Lamaze and yoga. Funny both those things use that breathing practice as my experiences with both have had extreme and painful results afterward. Anyway, know your comfort positions. Mine change over time and depend on the particular joints having a bad day. When it was just my hips I would sit kind of Indian style and then lay back. This stretched out my hip flexors and forced my back into a more comfortable arch. I could sit like that and day dream for a good hour at a time. Yes I looked a bit crazy dropping down on my coat on the floor of the airport, but it sure felt a lot better, and those long boring layovers were much more tolerable. Laugh. This one is a universal mood enhancer. I'm blessed with the ability to find humor in the not humorous. Much to the dismay of many people around me who find it impolite, but none the less there has to be a reason for inappropriate humor. Maybe my arthritis is the reason. No matter what's going on I can usually find something humorous and inappropriate to say or think.
So to end today's blog I'm asking everyone to keep their fingers crossed that not only does Simponi help my arthritis and my psoriasis, but that it doesn't bring on the side effects from the depths of hell. I'll take a few minor ones, but I'd rather not gargle glass, be bald or get pneumonia.
Sunday, August 12, 2012
Time to face the music.
I was looking at my sick days for the year the other day and counted them all up. I am sitting at 18 days in the last year. 16 days of that are arthritis days. That doesn't include days I took vacation days rather than sick days. It's time to face the music and start thinking about applying for Family Medical Leave Act (FMLA). I haven't done much research on it yet. Honestly I have been stalling hoping it wasn't going to be a reality. One of those if you ignore it, it doesn't exist kind of things, but unfortunately it does exist.
I talked to a friend the other day who has Chron's disease. She suggested I look into FMLA. She is on it, and said it offers a level of protection against being discriminated against at work because of your illness or disability. It kind of feels like giving up to admit I am at the point that I need to go on FMLA, but the truth of the matter is I am at that point. So Thursday when I go to see my Dr I am going to have him help me fill out the paperwork. I am going to give in.
I wish I didn't have this decision to make. I've known it would come to this at some point. Just as I know the day will come when I can't work. It doesn't make the path any less rocky when you know those rocks are waiting for you to climb over them.
I guess it's time to start doing that research. Let the fun begin!
I talked to a friend the other day who has Chron's disease. She suggested I look into FMLA. She is on it, and said it offers a level of protection against being discriminated against at work because of your illness or disability. It kind of feels like giving up to admit I am at the point that I need to go on FMLA, but the truth of the matter is I am at that point. So Thursday when I go to see my Dr I am going to have him help me fill out the paperwork. I am going to give in.
I wish I didn't have this decision to make. I've known it would come to this at some point. Just as I know the day will come when I can't work. It doesn't make the path any less rocky when you know those rocks are waiting for you to climb over them.
I guess it's time to start doing that research. Let the fun begin!
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