The weather is finally starting to warm up and with it has come some pretty good news for a change. I am starting to be able to move around a lot more. I've been out of the house twice this week already and for that, I'm really excited! It's nice to be able to get up and do things when you want to instead of when you absolutely have to or not being able to do them at all. I am able to help out more with things around the house, like having energy to fold laundry, help with a few cleanup tasks, even get snacks for my son occasionally. While these may seem insignificant to some, they are major steps for me. It has also helped to ease some of the frustration from my hubby so that he can rest once in a while instead of being on the go between Alex and I tweny-four hours a day.
I still have my appointment coming up with the rheumatologist on the 23rd, and I certainly hope he will write the prescription for my HUMIRA, because this is getting crazy. I NEED my medication! For now I will settle for the warm weather and feeling a lot better than I do on the cold/rough days. YAY!
Wednesday, February 16, 2011
Thursday, February 3, 2011
Cursed
Okay a quick update for today. The pharmacy called to tell me that the doctor who was supposed to look at my chart (I mentioned yesterday) was called out for hospital duty today and her replacement would not write my prescription because he doesn't know my case; therefore he said I have to wait until the 23rd when I see the rheumatologist. Really?? I am starting to understand what Job went through and I totally feel his pain...
Wednesday, February 2, 2011
Still Waiting
It's been almost three months since my last update and I must say that there is a good (or bad depending on how you look at it) reason for it. Since November things have progressed at a rate that even I don't believe. The doctor that I saw told me that the reason for the speed is probably due to rebound effect from being on/off/on/off the medication. I guess I understand that, and I can guarantee that if I can help it, once I get back on the medicine I am not going off!
I don't want to drag this post out so we will go with the short version of the story. Mid-Nov I sprained my right knee and wound up in a brace for a while. During Christmas time I developed problems in my right hand and wrist that now keep me from being able to do anything with it. I'm not sure if it was all the crocheting I did for presents or just the natural progression of my arthritis. Either way, I am one handed now. My index finger on this hand is in the same shape as my middle finger on the left hand that I've mentioned in previous posts. After we finished shopping for our son, I made myself stay home for several days before Christmas so that I was able to get out and head over to the in-law's for dinner. That actually went pretty well. Once we got home I was not much feeling like going out anymore so I was back to camping on the couch, until one day...
January 6 I was scheduled for another doctor's appointment, however, on the way out the door my very helpful husband and I made a misstep and ended up falling off of the porch together. Well, he fell on top of me but quickly rolled off so he didn't hurt me worse. Luckily nothing was broken except my pride and self-esteem. However, I did hit my head on the sidewalk and jar every bone in my already aching body. Needless to say, I missed my appointment. The next day I was so sore that I opted to stay in bed all day. What I found out by doing this was that I actually felt a bit better in my bed than I did on the couch because I was able to move around more freely than being stuck in one position. So, that's where I've been camping ever since. I can sit up, lie down, stretch, prop up my legs or not, I can get as comfy as I want. I don't often sit up for long because it makes my legs ache something terrible, and as for getting up...I get to the bathroom alright, with a lot of help from hubby most of the time, and a lot of screaming/crying from pain ALL the time.
So whatever happened to the clinic getting my shots for me? I've gotten so much run-around that I don't really even know right now. I've been told everything from "your medicine was ordered Nov. 19, it takes 6 to 8 weeks to get here and should be in any time now"... to just last week I heard "sorry, I don't have a prescription for your medicine from one of our doctor's...it appears the prescription you have is from an outside doctor and we can't accept it, so I'll leave your chart with the doc and see if she'll write a 'scrip for you but she won't be in until Feb 3, so we'll let you know. Sorry, even if I had a whole case of the med here I couldn't give it to you." This is the point where I want to tear my hear out by the roots and start throwing things around the room!!! I just want to get better, but it doesn't seem anyone else desires the same, except for hubby who would manufacture the shots himself if he could, I know he would.
For now I'm just taking my Ibuprofen, for lack of a better prescription, still crying a lot, and pushing myself to do as much as I can without killing over. I managed to take a whole shower standing up tonight, without my shower chair; something I haven't done in two months...one small victory at a time!
I don't want to drag this post out so we will go with the short version of the story. Mid-Nov I sprained my right knee and wound up in a brace for a while. During Christmas time I developed problems in my right hand and wrist that now keep me from being able to do anything with it. I'm not sure if it was all the crocheting I did for presents or just the natural progression of my arthritis. Either way, I am one handed now. My index finger on this hand is in the same shape as my middle finger on the left hand that I've mentioned in previous posts. After we finished shopping for our son, I made myself stay home for several days before Christmas so that I was able to get out and head over to the in-law's for dinner. That actually went pretty well. Once we got home I was not much feeling like going out anymore so I was back to camping on the couch, until one day...
January 6 I was scheduled for another doctor's appointment, however, on the way out the door my very helpful husband and I made a misstep and ended up falling off of the porch together. Well, he fell on top of me but quickly rolled off so he didn't hurt me worse. Luckily nothing was broken except my pride and self-esteem. However, I did hit my head on the sidewalk and jar every bone in my already aching body. Needless to say, I missed my appointment. The next day I was so sore that I opted to stay in bed all day. What I found out by doing this was that I actually felt a bit better in my bed than I did on the couch because I was able to move around more freely than being stuck in one position. So, that's where I've been camping ever since. I can sit up, lie down, stretch, prop up my legs or not, I can get as comfy as I want. I don't often sit up for long because it makes my legs ache something terrible, and as for getting up...I get to the bathroom alright, with a lot of help from hubby most of the time, and a lot of screaming/crying from pain ALL the time.
So whatever happened to the clinic getting my shots for me? I've gotten so much run-around that I don't really even know right now. I've been told everything from "your medicine was ordered Nov. 19, it takes 6 to 8 weeks to get here and should be in any time now"... to just last week I heard "sorry, I don't have a prescription for your medicine from one of our doctor's...it appears the prescription you have is from an outside doctor and we can't accept it, so I'll leave your chart with the doc and see if she'll write a 'scrip for you but she won't be in until Feb 3, so we'll let you know. Sorry, even if I had a whole case of the med here I couldn't give it to you." This is the point where I want to tear my hear out by the roots and start throwing things around the room!!! I just want to get better, but it doesn't seem anyone else desires the same, except for hubby who would manufacture the shots himself if he could, I know he would.
For now I'm just taking my Ibuprofen, for lack of a better prescription, still crying a lot, and pushing myself to do as much as I can without killing over. I managed to take a whole shower standing up tonight, without my shower chair; something I haven't done in two months...one small victory at a time!
Saturday, November 6, 2010
Wow!
Thank you Dennis Jernigan for reminding me that "This is My Destiny"!!! It's funny how God works, and sometimes almost scary how He smacks us back into reality, LOL!
So I was actually feeling quite well for a change today, and while I was washing up some dishes I decided to turn on my mp3 player. Listening to some spiritual music is always a mood lifter and a great way to pass the time during mundane activities. Anyway, the first song that came on was "I Can Only Imagine" by Mercy Me, and that really got me to thinking. When I get to Heaven maybe I will dance, maybe I will take long walks with God, or even run to be by His side...all things I currently can not do; it will be fantastic! This lead me to thinking about an amazing friend who passed away from breast cancer back in early 2005, which also lead me to think about Dennis Jernigan's song, since both were played at her celebration of life.
It's not so much the lyrics of the Jernigan song that got to me, but the title itself. The realization began to take shape in my mind (which I knew all along, but had gotten away from wanting to believe I think...) that no matter what happens in my life, this is MY destiny! As long as I believe in God and follow His guidance then I am fulfilling the destiny He has in store for me. Now, whether this feels like a great way to live or not, with all the pain and tragedy I've had to deal with and whatever more may lay in store, there is a reason for it all. If that reason is simply to help someone else realize that they are not alone in their struggles, that someone out there knows how they feel, which is the purpose of this blog, then so be it! If that reason is to remind others that we are never alone when we are on God's team, then YAY! If that reason is to show others the love of Christ, the awesome power of His redeeming blood, the mercy and grace He bestows on us through salvation, and the unconditional love He has for us, then I say HALLELUJAH!
Whatever the reason may be, I will give my worries, my fears, my anger, my frustration, my depression, my pain, and my life to God...they are no longer mine, but are in His hands...and I will remember through it all, that THIS IS MY DESTINY! :)
So I was actually feeling quite well for a change today, and while I was washing up some dishes I decided to turn on my mp3 player. Listening to some spiritual music is always a mood lifter and a great way to pass the time during mundane activities. Anyway, the first song that came on was "I Can Only Imagine" by Mercy Me, and that really got me to thinking. When I get to Heaven maybe I will dance, maybe I will take long walks with God, or even run to be by His side...all things I currently can not do; it will be fantastic! This lead me to thinking about an amazing friend who passed away from breast cancer back in early 2005, which also lead me to think about Dennis Jernigan's song, since both were played at her celebration of life.
It's not so much the lyrics of the Jernigan song that got to me, but the title itself. The realization began to take shape in my mind (which I knew all along, but had gotten away from wanting to believe I think...) that no matter what happens in my life, this is MY destiny! As long as I believe in God and follow His guidance then I am fulfilling the destiny He has in store for me. Now, whether this feels like a great way to live or not, with all the pain and tragedy I've had to deal with and whatever more may lay in store, there is a reason for it all. If that reason is simply to help someone else realize that they are not alone in their struggles, that someone out there knows how they feel, which is the purpose of this blog, then so be it! If that reason is to remind others that we are never alone when we are on God's team, then YAY! If that reason is to show others the love of Christ, the awesome power of His redeeming blood, the mercy and grace He bestows on us through salvation, and the unconditional love He has for us, then I say HALLELUJAH!
Whatever the reason may be, I will give my worries, my fears, my anger, my frustration, my depression, my pain, and my life to God...they are no longer mine, but are in His hands...and I will remember through it all, that THIS IS MY DESTINY! :)
Friday, November 5, 2010
Responsibility
Today stinks...in a whole lot of ways. Hubby had a job he needed to do, out of town. It was going to be the first time he left me alone with Alex in several weeks, since my problem started getting really bad. Sometime in the night I got worried, so I voiced my concerns to hubby this morning. I am not sure that I should be left alone with a 2 year old who constantly gets into things, can't sit still for more than 5 minutes, is potty trained but sometimes needs help and has to get there in a hurry, and who is going through a growth spurt and wants something to eat/drink every 10 minutes. The sad part of this is that means I am not fully capable of taking care of my own son :( It's a horrible day when you come to this kind of conclusion.
Thursday, November 4, 2010
Immobility, Realization, and Depression
So it's been a while since my last post, and there's definitely a good explanation. This disease is kicking my butt! Yes, you heard me right...no matter what I do it seems to be an epic fail.
The last time you heard from me I was waiting to get back on my Humira shots to hopefully get rid of some of this pain and slow down the progression of my arthritis. Well, so far that's been a no go. While I did get in to see my doctor, and I did get my part of the paperwork sent in to Abbot for their patient assistance program, my doctor did NOT complete his part. See, when they send you the paperwork they send both your part and the part the doctor has to fill out; they also send the same pages to your doctor. I don't even know how to say what I think about my doctor, because he got it in his head (he did this the first time around, too even though I fully explained it to him!) that since he had both parts of the paperwork he had to wait until I came in for my next appointment so he could fill my part out with me. It never crossed his mind that I am an intelligent woman capable of handing MY end of things on my own...so my part has been sitting with the company now for over a month, just waiting on a doctor's prescription and signature so that I can get my shots. Grrrrrrrrrrrrrrrrrr!!!
In the meantime you may be wondering what has happened to me health wise... Around the time of my last post I broke down and bought myself a cane from Wal-Mart. Some days it is great and other days it doesn't help because it's my right side that needs help, which means putting the cane on the left and that is where I have the problems with my finger, so that makes it difficult to grasp the cane. Anyway, the pain in my right knee has increased dramatically; I can not even bend my knee when I walk most of the time, it's like trying to walk with a cast and no crutches. Getting in and out of the shower is quite difficult, and so is actually taking a shower. When you can barely move without pain and can't stand up for long it's rather difficult to accomplish certain tasks. We are now looking at getting a shower chair. :( I have also made it to the point that I now have to use a wheelchair when we go shopping because if I don't, I have to rush us through the store so I can get off of my feet, and when I do get off of them they are swollen, turning blue/purple and hurt immensely. On top of all of this, the severity of my psoriasis itself has increased. I am now 85% covered in red/scaly patches.
All of this has put me in a rather bad mood. Lately I spend most of my days sitting around feeling miserable and crying. I cry when I hurt and I can't get out of bed, or the chair, or off the couch. I cry when I can't stand in my kitchen for 10 mins to cook dinner or wash dishes; when I don't have the energy to take a shower, when I can't pick up my son or hold a book up long enough to read. I cry when I can't bend over to get laundry out of the dryer, or summon up the energy to fold it if someone else takes it out. I cry because I don't understand, I don't think it's fair and I often wonder if it will ever get better.
So the realization part of today's post comes from this last statement. I have now realized that I've been hoping for a miracle when I finally get back on my shots, and I have also realized that I may very well be setting myself up for a letdown. While the Humira may offer some relief, this time around due to the amazingly fast progression of my disease, it may not work as well as it did in the past. This afternoon when I woke up from a nap, I began to wonder what is going to happen if things don't get better. What if this is the best I will be from now on? What will I do, how will I manage, what effect will this have on my marriage, and on my son, how will he be taken care of should this somehow turn out to be a fatal issue? That, I think, is my biggest fear. I've never heard of arthritis being fatal, but with all of this pain it leads to concerns about hip or knee replacements, hand surgery, etc... and it just seems like there is no end in sight for the pain. How does one go on like this for years?
Well, even though it doesn't seem like it, I'm trying to keep a positive attitude and hope for the best. Please keep me in your prayers, and my family who has to deal with me dealing with this..they need it!
P.S. I want to say a great big THANK YOU to my husband who continues to support me throughout all of this; who constantly takes my place making dinner, doing laundry, taking care of the baby, helping me get around and bringing me things when I can't get them myself; and who consistently holds me, caresses me, shows me affection, and tells me how much he loves me. I LOVE YOU, Sweetheart!
The last time you heard from me I was waiting to get back on my Humira shots to hopefully get rid of some of this pain and slow down the progression of my arthritis. Well, so far that's been a no go. While I did get in to see my doctor, and I did get my part of the paperwork sent in to Abbot for their patient assistance program, my doctor did NOT complete his part. See, when they send you the paperwork they send both your part and the part the doctor has to fill out; they also send the same pages to your doctor. I don't even know how to say what I think about my doctor, because he got it in his head (he did this the first time around, too even though I fully explained it to him!) that since he had both parts of the paperwork he had to wait until I came in for my next appointment so he could fill my part out with me. It never crossed his mind that I am an intelligent woman capable of handing MY end of things on my own...so my part has been sitting with the company now for over a month, just waiting on a doctor's prescription and signature so that I can get my shots. Grrrrrrrrrrrrrrrrrr!!!
In the meantime you may be wondering what has happened to me health wise... Around the time of my last post I broke down and bought myself a cane from Wal-Mart. Some days it is great and other days it doesn't help because it's my right side that needs help, which means putting the cane on the left and that is where I have the problems with my finger, so that makes it difficult to grasp the cane. Anyway, the pain in my right knee has increased dramatically; I can not even bend my knee when I walk most of the time, it's like trying to walk with a cast and no crutches. Getting in and out of the shower is quite difficult, and so is actually taking a shower. When you can barely move without pain and can't stand up for long it's rather difficult to accomplish certain tasks. We are now looking at getting a shower chair. :( I have also made it to the point that I now have to use a wheelchair when we go shopping because if I don't, I have to rush us through the store so I can get off of my feet, and when I do get off of them they are swollen, turning blue/purple and hurt immensely. On top of all of this, the severity of my psoriasis itself has increased. I am now 85% covered in red/scaly patches.
All of this has put me in a rather bad mood. Lately I spend most of my days sitting around feeling miserable and crying. I cry when I hurt and I can't get out of bed, or the chair, or off the couch. I cry when I can't stand in my kitchen for 10 mins to cook dinner or wash dishes; when I don't have the energy to take a shower, when I can't pick up my son or hold a book up long enough to read. I cry when I can't bend over to get laundry out of the dryer, or summon up the energy to fold it if someone else takes it out. I cry because I don't understand, I don't think it's fair and I often wonder if it will ever get better.
So the realization part of today's post comes from this last statement. I have now realized that I've been hoping for a miracle when I finally get back on my shots, and I have also realized that I may very well be setting myself up for a letdown. While the Humira may offer some relief, this time around due to the amazingly fast progression of my disease, it may not work as well as it did in the past. This afternoon when I woke up from a nap, I began to wonder what is going to happen if things don't get better. What if this is the best I will be from now on? What will I do, how will I manage, what effect will this have on my marriage, and on my son, how will he be taken care of should this somehow turn out to be a fatal issue? That, I think, is my biggest fear. I've never heard of arthritis being fatal, but with all of this pain it leads to concerns about hip or knee replacements, hand surgery, etc... and it just seems like there is no end in sight for the pain. How does one go on like this for years?
Well, even though it doesn't seem like it, I'm trying to keep a positive attitude and hope for the best. Please keep me in your prayers, and my family who has to deal with me dealing with this..they need it!
P.S. I want to say a great big THANK YOU to my husband who continues to support me throughout all of this; who constantly takes my place making dinner, doing laundry, taking care of the baby, helping me get around and bringing me things when I can't get them myself; and who consistently holds me, caresses me, shows me affection, and tells me how much he loves me. I LOVE YOU, Sweetheart!
Sunday, August 22, 2010
Painful days
There are days when psoriatic arthritis is not really an issue; days when you wake up in little to no pain, and you feel like you can do anything you want. Then...there are days like today. I woke up this morning somewhere around 6am because my lower back has decided that I am not allowed to sleep in my bed anymore. It has been giving me problems for a couple of weeks now where it starts hurting a few hours after I lie down and then only thing that clears up the pain is to get out of bed. I usually wind up walking around the house a bit, then camping out in hubby's recliner because it leans back very well and is actually quite comfortable. It helps stretch my back out so that I can fall back to sleep; the downfall to that is not being able to turn over in the chair, which makes everything else stiff and sore by the time I wake up.
So I woke up this morning in the chair, only to discover that my left hand (the one that has been swollen so bad lately) was extremely sore. Now, just so that you can fully understand what I mean by this... if I held my hand up for you to breathe on it, and you blew air across the sore joint, I would likely scream bloody murder. That was the seriousness of the pain. A soak of the hand in a bowl of hot water, two Iburpofen, and eventually a hot shower, later...I can now bend the finger a tad before screaming, but just a tad.
It's another of those days that makes it easy to want to yell at God and blame him for giving me this disease, to be mad at the world and yell at them because I don't understand why I have to go through this, and to just go back to bed and spend the whole day crying. However, I have a child who needs to be fed, played with, entertained, and taught. I also have a husband who needs loved, fed, and sometimes entertained, lol. I have laundry and dishes that need done, crochet projects to finish, this blog to write, and probably hundreds of other things if I look around. So, here I am, typing to you with one hand while holding the other up so that it's above my heart for better blood flow, and because for some odd reason it just feels better up here on my shoulder.
To my faithful readers...I hope you are having a better day than I am :)
So I woke up this morning in the chair, only to discover that my left hand (the one that has been swollen so bad lately) was extremely sore. Now, just so that you can fully understand what I mean by this... if I held my hand up for you to breathe on it, and you blew air across the sore joint, I would likely scream bloody murder. That was the seriousness of the pain. A soak of the hand in a bowl of hot water, two Iburpofen, and eventually a hot shower, later...I can now bend the finger a tad before screaming, but just a tad.
It's another of those days that makes it easy to want to yell at God and blame him for giving me this disease, to be mad at the world and yell at them because I don't understand why I have to go through this, and to just go back to bed and spend the whole day crying. However, I have a child who needs to be fed, played with, entertained, and taught. I also have a husband who needs loved, fed, and sometimes entertained, lol. I have laundry and dishes that need done, crochet projects to finish, this blog to write, and probably hundreds of other things if I look around. So, here I am, typing to you with one hand while holding the other up so that it's above my heart for better blood flow, and because for some odd reason it just feels better up here on my shoulder.
To my faithful readers...I hope you are having a better day than I am :)
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