I think I am starting to see the consequences of my ways. How I handle things. And ultimately, how I am showing my kids to handle things.
I just got back from a conference with my son's teachers. He is in fifth grade and classified as learning disabled. It is three weeks in and I am already in for a meeting with his team. Apparently, he is "checked out". Already. Overall, we haven't had to come in this early for a meeting since we made the choice, about three years ago, to allow him to be classified. I thought everything was going relatively well, with some minor glitches. If asked how things were going, even specifically, he would reply, "Great!". Things are not great. I got the call last week.
What I heard the teachers saying was that, my typically anxious kid, was showing no signs of anxiety. At all. And we were seeing the same at home. Everything is just ducky. At least that is what Ethan wants us all to think. The reality is, he is overwhelmed and won't ask for help.
I think as parents, we try to shield our children from some of life's unpleasantries in an effort to preserve and prolong their blissful childhood. I do this. All. The. Time.
During the conference, we got to a point where I was forced to give a more detailed explanation of what has been happening in the house and some changes that are about to happen. "That is a lot to have going on. That has to be stressful." I reply, "I'm fine." I hear myself and I realize that is just what Ethan has been saying. And he doesn't think he needs help either...and God forbid he asks. What have I done?
I have set him up for failure. I often refuse to ask for help, because in my eyes, it means I have failed. I am sure the kids are aware of this. My husband gets upset when he finds I have done or attempted to do something maybe I shouldn't have without help. I snap back that I don't need help. I know it's because I am secretly angry about the changes going on inside of me and want to prove that I am stronger than my moronic immune system, RA and fibromyalgia. I may have used up all the hot water in the shower that day because it is the only place I allow myself to cry and acknowledge how much I hurt, how exhausted I am and how scared I am about the future and what life will be like and what people must think of me. But ask me how I am..."Fine/Good/Great." Unless I am comfortable enough, I won't let my guard down. I don't say I am overwhelmed. I never wanted to be that person that someone regretted asking, "How have you been?"
My kids aren't stupid. They know I am lying through my teeth to other people. They know I say I am fine and refuse help altogether.
The teachers were kind in offering that perhaps I give the kids a bit more information so that the kids don't form their own conclusions. What I heard...my kids don't trust me to be honest with them I have failed them. I have been so concerned with what others may think of me if I am honest or ask for help. It is such a painful thing for me to admit and now my kids are doing the same.
I need to find a balance where I don't loose too much pride or comfort. I need to show my children that it is OK to ask for help and that it isn't always the best thing to say you are doing great, especially when you are not. But I don't want to encourage whining or needless excuses either. I want them to be strong, independent and productive individuals. I have to wonder if it is too late. If I have already unknowingly instilled bad habits in them? How do I fix this?
What is encouraging is that it is early in the school year and we are catching this. Maybe this new "showing" of anxiety is partially due to maturity. Maybe it is not all my fault. Maybe my beautiful boy is teaching me a lesson~
Maybe, my boy just broke me...
Showing posts with label RA. Show all posts
Showing posts with label RA. Show all posts
Monday, October 7, 2013
Tuesday, October 1, 2013
Falling Back & Pushing Forward
RA is no joke. I am about a week away from being reminded of just how funny it never has been. It's not the pain that breaks me..it's the quality of my hours, days, sleep, play and brain that does. I have been without an infusion since June 4th. I just got the go ahead to start them again. Except I cannot because I am having surgery soon. I decided to eek it out until after. I have to wait until mid November to have the next infusion. On top of that, for the next 3 weeks, they are taking me off the methotrexate. This rattles me a bit. I missed my weekly dose, once. That is all it took. One time and I never missed it again. It is that bad. I would be lying if I said I wasn't terrified of what most likely is about to happen. A lot of people don't know or understand how bad RA can feel or be. A lot do. I really am not ready to fall that far backwards.
There have been no posts here because my hands and fingers ache. Otherwise, I have been doing well. Our summer went by too quickly, but was packed with a lot of happenings. August was a blur of stressful events. I am thankful for family and friends that were there for us. Checking in, popping by and calling. All at what seemed to be perfect moments where I gladly welcomed the distraction from all that was happening.
September came and it was time for school. The time of year I dread the most because I have to give up my babies for a good part of too many days per week. We decided to take some family time and extend our annual camping trip with my sisters and their families (aka Sister~Fest!). We went a few days ahead and enjoyed some kayaking, beach days and a trip to Gettysburg. It was wonderful. My sisters and their crews showed up for their usual days and we all enjoyed the best Sister~Fest yet!
October is going to be a blur as well. The next couple weeks are filled with doctor appointments, tests and ultimately, the surgery. I don't care if someone minimizes the procedure, but what I can't tolerate is how all this makes me feel being minimized. I just want to get to the other side of October 15th. To know that I made it. Alive (oh yeah... I have had many surgeries in the past. This is the first time I have thought, "what if I don't make it?"). I have reason, above the typical risks, to worry about this. To know that it's done. No more fantasy of my body suddenly being healthy enough for "one more". Remove the option so I can move on. Not only am I looking forward to healing from the actual surgery, but I am looking to heal altogether. Get this done so I can resume treatment for RA, etc. Get this done so I can start to process the end of something I wasn't ready to be ended (last week I went through a flurry of purging the attic and house of baby items. All except the crib and changing table. I couldn't bring myself to let go.). I want to move on. Forward. And for the love of God! I would like to have a shot at a healthy Thanksgiving and Christmas...for the first time in FOUR years!!
This is where I am at. This is where I have been. I have not been ignoring or avoiding anybody. I have just been busy trying to keep up with life. I appreciate the concern and you stopping by here and it means a lot that so many take the time to check in. It truly does.
I am hoping to pick up this blog where it originated (a weight loss journey) when I am recovered. Somehow, despite all the steroids, I have dipped well below the weight that started this journey. I haven't researched it yet, but I wonder how much a uterus weighs? Can I count it as an official loss? I am hoping that it weighs somewhere in the neighborhood of 100 pounds. What do ya think?
There have been no posts here because my hands and fingers ache. Otherwise, I have been doing well. Our summer went by too quickly, but was packed with a lot of happenings. August was a blur of stressful events. I am thankful for family and friends that were there for us. Checking in, popping by and calling. All at what seemed to be perfect moments where I gladly welcomed the distraction from all that was happening.
September came and it was time for school. The time of year I dread the most because I have to give up my babies for a good part of too many days per week. We decided to take some family time and extend our annual camping trip with my sisters and their families (aka Sister~Fest!). We went a few days ahead and enjoyed some kayaking, beach days and a trip to Gettysburg. It was wonderful. My sisters and their crews showed up for their usual days and we all enjoyed the best Sister~Fest yet!
October is going to be a blur as well. The next couple weeks are filled with doctor appointments, tests and ultimately, the surgery. I don't care if someone minimizes the procedure, but what I can't tolerate is how all this makes me feel being minimized. I just want to get to the other side of October 15th. To know that I made it. Alive (oh yeah... I have had many surgeries in the past. This is the first time I have thought, "what if I don't make it?"). I have reason, above the typical risks, to worry about this. To know that it's done. No more fantasy of my body suddenly being healthy enough for "one more". Remove the option so I can move on. Not only am I looking forward to healing from the actual surgery, but I am looking to heal altogether. Get this done so I can resume treatment for RA, etc. Get this done so I can start to process the end of something I wasn't ready to be ended (last week I went through a flurry of purging the attic and house of baby items. All except the crib and changing table. I couldn't bring myself to let go.). I want to move on. Forward. And for the love of God! I would like to have a shot at a healthy Thanksgiving and Christmas...for the first time in FOUR years!!
This is where I am at. This is where I have been. I have not been ignoring or avoiding anybody. I have just been busy trying to keep up with life. I appreciate the concern and you stopping by here and it means a lot that so many take the time to check in. It truly does.
I am hoping to pick up this blog where it originated (a weight loss journey) when I am recovered. Somehow, despite all the steroids, I have dipped well below the weight that started this journey. I haven't researched it yet, but I wonder how much a uterus weighs? Can I count it as an official loss? I am hoping that it weighs somewhere in the neighborhood of 100 pounds. What do ya think?
Wednesday, May 1, 2013
Worn
Bet if you follow me on facebook, you knew this was coming. The pity post. So here it is.
I want to say how impossible all this is. But the positive freaky cheer leader that lives in me is waving those stupid strings on a handle at me, wearing a smile and saying, "Nothing is impossible!!! Nothing! Keep your head high! S-M-I-L-E!!! Rah! Rah! Rah!" Her incessant perkiness is making me want to use her obnoxious megaphone to knock her into the furthest corner of my mind; forever. I am really not a fan of hers right now. Not at all.
With the exception of a few that I am close to, I rarely reveal how I am feeling. Even then, I am usually filled with regret. Often because I think and feel I sense of disappointment. I feel like it is thought that I could be handling things better. And then sometimes I get angry, thinking, "who the hell do you think you are? If you are judging me and feel that I could handle this better, well then YOU have no idea who I am and how strong I have been! Everybody cracks, every once in a while." And then I rethink it all and assure myself that I am just reading into things and that really what I am upset about is my own insecurity about how my strength and endurance is being perceived.
By the way, strength is: NOT dropping several F-Bombs here. Believe me, I really want to. So please, feel free to insert them where you feel is appropriate. I have heard several choice "bad words" escaping my lips (not in front of the children!) more frequently, lately. Reflection tells me it's the anger making it's way to the surface. A slow release, I suppose, in hopes to avoid an inevitable explosion. Perhaps this mini break-down could have been worse if not for those few moments of, "I don't give acrap [this would be a good place to insert a stronger word. Just sayin'] about what is/just/will fly out of my mouth!" Perhaps, it's just my way of making it clear, if you were taking notes, where an exclamation point should be." Because, seriously, how often is any "bad word" not followed by an exclamation point?! And if my brain weren't so Fibro-Fogged right now, I would be able to think of the freaking word I am trying to use here. Authentic, creative...strong point, emphasis. Son of a ...I can't think of it, right now! Let's just call it a passionate expression. Right now, I have a desire to be passionately expressive.
I get why some older people are perceived as grumpy. I really do. All their lives, they were independent, active and full of life. And then they are no longer. The "youngsters" in and around their lives buzz all around them effortlessly and seemingly, tirelessly and seem to take for granted all they are able to accomplish. I can imagine the transition is difficult. So much of what they thought defined who they were all those years, all the things they mastered and aspired to master are suddenly and seemingly useless. There it is. Useless. I don't give a rip what you are thinking right now! And I know that I am useful, but if you want to know, really know, what your aging parent, grandparent may be feeling and want to understand them better, then read on. Sometimes truth is disappointing, hard to swallow and entirely inconvenient. Feeling useless, at times, is a reality. Like it, or not.
Currently, I am very limited. This time, it is not because of my RA. In a couple months, hopefully, I will be having a hysterectomy. When I say, hopefully, do not read that I either want or am ready for this. Because, I am not. That is a whole other issue. The hopefully, is because I don't know how much more of these limitations I can handle. If it was just an issue of the inconvenience and strange feeling of the "situation" that the hysterectomy is needed, I could deal with it. The issue is the pain. The more I am on my feet, the more painful things get. The pain is always present but way more prominent when I have been standing. The kind of pain that leaves you restless, and if I am to be honest, scared.
There is so much to be done and so much I want to do. If I could just let it go, I would. What is terribly hard for me to handle is knowing that whatever I am letting go of, someone else is burdened with. I hate that. My time siting here is consumed with finding solutions to the problems. I can drive the lawn tractor around and, well ok, so right now, if someone gets it, hooks up the trailer to it, and brings it closer to me, I can drive it. That's it. I can freaking drive the damn tractor. Someone get me a medal. All this [insert Passionately Expressive (PE) word here] time I have during the day and I am useless.
I just want to be on the other side of all this, look back and say, "Wow, that was rough, but I made it." We just got to the point in my RA treatment, where I feel I could have been/will be at the cusp of feeling the best I have in years and another hurtle is placed before me. My face isn't against the wind, as it should be. I firmly believe that we are never handed more than we can handle. However, I am tired. I will continue to push forward, because there simply is no other acceptable choice.
The weight of walking through this is proving too much lately. I've got that face on again. The "Everything is just Peachy" face. So not peachy.
I am really trying to make the best of everything. I was encouraged that maybe I am doing better that I think I am last night when DH had this to say to me, "I keep expecting to have that moment where I tell you to snap out of it, but even after all this time with everything going on, you are still holding strong." He tells me he is relieved in those moments when I break down and cry. Funny, it's those moments I feel so weak and exposed and again, if I am being honest, ashamed. I cannot believe he still thinks I am strong. Especially when I have been feeling so broken.
There is so much happening, so much coming at me and I am struggling to navigate my way through it. I can't find a balance I am happy with. I am realizing I am living with the balance everyone else is happy with. I feel like I am expected to just sit here and be content with what is. Count my blessing and don't complain. I don't complain much. I have and do count my blessings! Want proof of that? I am still here! I still fight and work hard to go along with everyone else's expectations, as well as mine! I am pissed that I sometimes can't say what I am feeling, because it may just make someone uncomfortable. Well, guess what? Life is uncomfortable. If I tell you that I feel like I am not as useful as I used to be, don't roll your [insert PE here] eyes and act annoyed! That is how I feel! Seriously! Some people are so wrapped up in their own world and expectations that they can't even see or hear how ignorant they are being.
That cheerleader in my head can go to hell! And with her, she can take all the unrealistic, inconvenient, and uncomfortable BS with her. Until she can come back with a cheer that goes, "It's a bad day and that's OK! Let's go kick some [PE] [PE]!! YEAH!", I don't want to hear from her.
When you come across that older person (or anyone, for that matter), try not to be so dismissive. Also, no pity please. That is not what we want. Remember that someday, you will be missing the person you once were. For some, it just comes sooner than ever expected.
***After writing this, I found this posted on facebook for me. Kristin, thank you so much. It is as if someone read my heart. xo Because of this, I am changing the post title :)
I want to say how impossible all this is. But the positive freaky cheer leader that lives in me is waving those stupid strings on a handle at me, wearing a smile and saying, "Nothing is impossible!!! Nothing! Keep your head high! S-M-I-L-E!!! Rah! Rah! Rah!" Her incessant perkiness is making me want to use her obnoxious megaphone to knock her into the furthest corner of my mind; forever. I am really not a fan of hers right now. Not at all.
With the exception of a few that I am close to, I rarely reveal how I am feeling. Even then, I am usually filled with regret. Often because I think and feel I sense of disappointment. I feel like it is thought that I could be handling things better. And then sometimes I get angry, thinking, "who the hell do you think you are? If you are judging me and feel that I could handle this better, well then YOU have no idea who I am and how strong I have been! Everybody cracks, every once in a while." And then I rethink it all and assure myself that I am just reading into things and that really what I am upset about is my own insecurity about how my strength and endurance is being perceived.
By the way, strength is: NOT dropping several F-Bombs here. Believe me, I really want to. So please, feel free to insert them where you feel is appropriate. I have heard several choice "bad words" escaping my lips (not in front of the children!) more frequently, lately. Reflection tells me it's the anger making it's way to the surface. A slow release, I suppose, in hopes to avoid an inevitable explosion. Perhaps this mini break-down could have been worse if not for those few moments of, "I don't give a
I get why some older people are perceived as grumpy. I really do. All their lives, they were independent, active and full of life. And then they are no longer. The "youngsters" in and around their lives buzz all around them effortlessly and seemingly, tirelessly and seem to take for granted all they are able to accomplish. I can imagine the transition is difficult. So much of what they thought defined who they were all those years, all the things they mastered and aspired to master are suddenly and seemingly useless. There it is. Useless. I don't give a rip what you are thinking right now! And I know that I am useful, but if you want to know, really know, what your aging parent, grandparent may be feeling and want to understand them better, then read on. Sometimes truth is disappointing, hard to swallow and entirely inconvenient. Feeling useless, at times, is a reality. Like it, or not.
Currently, I am very limited. This time, it is not because of my RA. In a couple months, hopefully, I will be having a hysterectomy. When I say, hopefully, do not read that I either want or am ready for this. Because, I am not. That is a whole other issue. The hopefully, is because I don't know how much more of these limitations I can handle. If it was just an issue of the inconvenience and strange feeling of the "situation" that the hysterectomy is needed, I could deal with it. The issue is the pain. The more I am on my feet, the more painful things get. The pain is always present but way more prominent when I have been standing. The kind of pain that leaves you restless, and if I am to be honest, scared.
There is so much to be done and so much I want to do. If I could just let it go, I would. What is terribly hard for me to handle is knowing that whatever I am letting go of, someone else is burdened with. I hate that. My time siting here is consumed with finding solutions to the problems. I can drive the lawn tractor around and, well ok, so right now, if someone gets it, hooks up the trailer to it, and brings it closer to me, I can drive it. That's it. I can freaking drive the damn tractor. Someone get me a medal. All this [insert Passionately Expressive (PE) word here] time I have during the day and I am useless.
I just want to be on the other side of all this, look back and say, "Wow, that was rough, but I made it." We just got to the point in my RA treatment, where I feel I could have been/will be at the cusp of feeling the best I have in years and another hurtle is placed before me. My face isn't against the wind, as it should be. I firmly believe that we are never handed more than we can handle. However, I am tired. I will continue to push forward, because there simply is no other acceptable choice.
The weight of walking through this is proving too much lately. I've got that face on again. The "Everything is just Peachy" face. So not peachy.
I am really trying to make the best of everything. I was encouraged that maybe I am doing better that I think I am last night when DH had this to say to me, "I keep expecting to have that moment where I tell you to snap out of it, but even after all this time with everything going on, you are still holding strong." He tells me he is relieved in those moments when I break down and cry. Funny, it's those moments I feel so weak and exposed and again, if I am being honest, ashamed. I cannot believe he still thinks I am strong. Especially when I have been feeling so broken.
There is so much happening, so much coming at me and I am struggling to navigate my way through it. I can't find a balance I am happy with. I am realizing I am living with the balance everyone else is happy with. I feel like I am expected to just sit here and be content with what is. Count my blessing and don't complain. I don't complain much. I have and do count my blessings! Want proof of that? I am still here! I still fight and work hard to go along with everyone else's expectations, as well as mine! I am pissed that I sometimes can't say what I am feeling, because it may just make someone uncomfortable. Well, guess what? Life is uncomfortable. If I tell you that I feel like I am not as useful as I used to be, don't roll your [insert PE here] eyes and act annoyed! That is how I feel! Seriously! Some people are so wrapped up in their own world and expectations that they can't even see or hear how ignorant they are being.
That cheerleader in my head can go to hell! And with her, she can take all the unrealistic, inconvenient, and uncomfortable BS with her. Until she can come back with a cheer that goes, "It's a bad day and that's OK! Let's go kick some [PE] [PE]!! YEAH!", I don't want to hear from her.
When you come across that older person (or anyone, for that matter), try not to be so dismissive. Also, no pity please. That is not what we want. Remember that someday, you will be missing the person you once were. For some, it just comes sooner than ever expected.
***After writing this, I found this posted on facebook for me. Kristin, thank you so much. It is as if someone read my heart. xo Because of this, I am changing the post title :)
Saturday, March 30, 2013
The Best Medicine
Compared to yesterday, today was great awesome. Honestly, it is hard not to have a better day when my whole family is home with me. They are the perfect distraction to emotions, frustrations and discomfort spiraling out of control. When they are around, I don't need to remind myself to breathe...or laugh. I feel like I have a purpose and they make getting things done much easier because they are quick to step in and help reduce the amount of steps it takes to get things done. I am as close to the person I used to be when they are around.
There was a time where, when the storm was over, I would have read something like I what wrote yesterday and cringe. For many reasons, like sounding weak, pitiful, temper-tantrum-y. I guess I just don't care so much any more. The fact is, this is part of who I am. And if you would like to sit here and tell me you think you could or would handle it better, well then...yay freaking you!. This is no party and there are HUGE learning curves. Life isn't predictable in itself. Life with RA...well, it's kinds willy nilly for me. Bad days are inevitable. And never predicable! I am just thankful that the good days outweigh the bad, overall.
Truth is, I learned a bit yesterday. I allowed myself to break a bit and admit what I had been feeling for a very long time. When I wrote the words, "I want my life back!", tears flowed freely. The dam burst and I understood how badly I had been feeling. More importantly, I admitted to myself how badly I had been feeling. Now I can begin to heal. And when the next temper tantrum comes, I will deal with that one accordingly as well.
The reality of RA is never going to go away. I know that. Doesn't mean I have to like it. I try to find the silver lining. Some days I do and some...not so much. Something else that I have learned, there is nothing that I am writing here that hasn't been thought about by most, at some point in their lives. And my writing it doesn't make me any weaker. I don't do silent well. As my dear husband will tell you, if I am quiet, something is brewing ;)
Tomorrow is another day. One more day away from yesterday and another day to spend with family. That is by far, the best medicine I have ever had!
Happy Easter to you and your families! xo
There was a time where, when the storm was over, I would have read something like I what wrote yesterday and cringe. For many reasons, like sounding weak, pitiful, temper-tantrum-y. I guess I just don't care so much any more. The fact is, this is part of who I am. And if you would like to sit here and tell me you think you could or would handle it better, well then...yay freaking you!. This is no party and there are HUGE learning curves. Life isn't predictable in itself. Life with RA...well, it's kinds willy nilly for me. Bad days are inevitable. And never predicable! I am just thankful that the good days outweigh the bad, overall.
Truth is, I learned a bit yesterday. I allowed myself to break a bit and admit what I had been feeling for a very long time. When I wrote the words, "I want my life back!", tears flowed freely. The dam burst and I understood how badly I had been feeling. More importantly, I admitted to myself how badly I had been feeling. Now I can begin to heal. And when the next temper tantrum comes, I will deal with that one accordingly as well.
The reality of RA is never going to go away. I know that. Doesn't mean I have to like it. I try to find the silver lining. Some days I do and some...not so much. Something else that I have learned, there is nothing that I am writing here that hasn't been thought about by most, at some point in their lives. And my writing it doesn't make me any weaker. I don't do silent well. As my dear husband will tell you, if I am quiet, something is brewing ;)
Tomorrow is another day. One more day away from yesterday and another day to spend with family. That is by far, the best medicine I have ever had!
Happy Easter to you and your families! xo
Thursday, March 28, 2013
In Sickness and in Health...
I wish I was sitting here writing about how great I am doing with my 3 minutes a day of activity. You have no idea how much I wish that were the case. I am still putting in the effort, but if I said it made me feel great, I would be flat. out. lying.
I feel like crap. Period. Eating is an issue. Walking is an issue. Sitting here is an issue. Blood work comes back and they want to prescribe something else. They find out I have not been taking one of my meds because it makes me feel even worse. "How long have you not been taking it" I tell them a couple months. It is metformin. It's more preventative (because of steroids and because I have PCOS) and even my levels were still acceptable. I tell them that I have not been taking it because I am already having GI issues and that med can make it worse. "We need to see you about this."
Truth is, I am so sick of being "seen". Every time I go, there is something else. I am tired of it. I am tired of drugs and poking and tests. I am tired of explaining. There are 3 more specialists I am supposed to consult with. I don't want to. For what? More tests? More wrongs. More meds. More false hope?
I just want to go to the store and run errands that most people complain about without slowing to a crawl 10 minutes into the trip. I want to not dread the snow melting because seeing all the outside clean-up that I can't really do right now, is depressing. I want to plan parties and be completely consumed with every detail to perfection. I want to walk in our woods and keep up with my children. I want to easily run up and down the stairs like I used to. I don't want to be dependant on anyone. I never was before. Damn it. I WANT MY LIFE BACK!!!
Today would not be a good day to complain to me about anything stupid. Anything that can be changed by a single or even multiple actions. Because it can be changed. This sucks. I have been compliant and patient and as positive as I can be. Today is a rough day. I will never even tell my husband how I am feeling because he has been so amazing, supportive, loving and wonderful. I hate that this is the wife he has.
My last job, I had a wonderful boss. His name was Tom. He was a wonderful man and husband. Tom's wife had RA (how ironic). She was just as wonderful. In many ways I never realized until the past couple of years, he was the kind of husband as Jim is to me. Patient, doting, kind, loyal & loving. Tom would speak to me often of his wife's illness. I didn't connect all of this until about a year or so ago. I had the privilege of seeing the other side of RA. It wasn't that he complained, but he was frustrated with every setback, illness, treatment, hospitalization and even need. Ann eventually became very dependent on Tom and he accepted that. However, he would reveal sometimes that, even though he knew she could do nothing about it, it was hard on him. He was not at all resentful. He was perfectly wonderful. But it was a difficult life. At the time, I had no idea, but it was a window in to my future. Even though I know Jim will walk through this with me without a single complaint, it is not what I wanted for him. For us. I know the vows. I don't care, He deserves better. I love him so much and am so thankful for all the things he does to make our lives the best they can be and better. I don't want it to be this hard.
And it is hard. I could sit here and write about exactly what is so hard, but honestly, my hands don't have the strength to make it through. I am dead serious. Just know that I have to work very hard to get some of the most mundane tasks completed. Try to count every joint in your body. 75% of mine are angry today. Oh, and lets not forget the brain sending false messages to my nerves telling me I hurt...for no reason. So count your muscles too. And then there are the latest issues (GI & female). Put all that together. Overwhelmed is an understatement. Don't judge. This sucks.
The things I want seem so simple. And trust me, I am always more than aware that my issues are a drop in the bucket compared to many. But today is hard. Today I am having a bit of a pity party. But honestly, at some point, wouldn't anybody? I will still smile and make sure any trace of tears are long gone before my beautiful babies come through that door. I have no choice other than to suck it up. I had the blessing to see what the other side or RA looks like and the tole it can take on a loved one. Chin up.
I feel like crap. Period. Eating is an issue. Walking is an issue. Sitting here is an issue. Blood work comes back and they want to prescribe something else. They find out I have not been taking one of my meds because it makes me feel even worse. "How long have you not been taking it" I tell them a couple months. It is metformin. It's more preventative (because of steroids and because I have PCOS) and even my levels were still acceptable. I tell them that I have not been taking it because I am already having GI issues and that med can make it worse. "We need to see you about this."
Truth is, I am so sick of being "seen". Every time I go, there is something else. I am tired of it. I am tired of drugs and poking and tests. I am tired of explaining. There are 3 more specialists I am supposed to consult with. I don't want to. For what? More tests? More wrongs. More meds. More false hope?
I just want to go to the store and run errands that most people complain about without slowing to a crawl 10 minutes into the trip. I want to not dread the snow melting because seeing all the outside clean-up that I can't really do right now, is depressing. I want to plan parties and be completely consumed with every detail to perfection. I want to walk in our woods and keep up with my children. I want to easily run up and down the stairs like I used to. I don't want to be dependant on anyone. I never was before. Damn it. I WANT MY LIFE BACK!!!
Today would not be a good day to complain to me about anything stupid. Anything that can be changed by a single or even multiple actions. Because it can be changed. This sucks. I have been compliant and patient and as positive as I can be. Today is a rough day. I will never even tell my husband how I am feeling because he has been so amazing, supportive, loving and wonderful. I hate that this is the wife he has.
My last job, I had a wonderful boss. His name was Tom. He was a wonderful man and husband. Tom's wife had RA (how ironic). She was just as wonderful. In many ways I never realized until the past couple of years, he was the kind of husband as Jim is to me. Patient, doting, kind, loyal & loving. Tom would speak to me often of his wife's illness. I didn't connect all of this until about a year or so ago. I had the privilege of seeing the other side of RA. It wasn't that he complained, but he was frustrated with every setback, illness, treatment, hospitalization and even need. Ann eventually became very dependent on Tom and he accepted that. However, he would reveal sometimes that, even though he knew she could do nothing about it, it was hard on him. He was not at all resentful. He was perfectly wonderful. But it was a difficult life. At the time, I had no idea, but it was a window in to my future. Even though I know Jim will walk through this with me without a single complaint, it is not what I wanted for him. For us. I know the vows. I don't care, He deserves better. I love him so much and am so thankful for all the things he does to make our lives the best they can be and better. I don't want it to be this hard.
And it is hard. I could sit here and write about exactly what is so hard, but honestly, my hands don't have the strength to make it through. I am dead serious. Just know that I have to work very hard to get some of the most mundane tasks completed. Try to count every joint in your body. 75% of mine are angry today. Oh, and lets not forget the brain sending false messages to my nerves telling me I hurt...for no reason. So count your muscles too. And then there are the latest issues (GI & female). Put all that together. Overwhelmed is an understatement. Don't judge. This sucks.
The things I want seem so simple. And trust me, I am always more than aware that my issues are a drop in the bucket compared to many. But today is hard. Today I am having a bit of a pity party. But honestly, at some point, wouldn't anybody? I will still smile and make sure any trace of tears are long gone before my beautiful babies come through that door. I have no choice other than to suck it up. I had the blessing to see what the other side or RA looks like and the tole it can take on a loved one. Chin up.
Thursday, April 19, 2012
Misunderstood
I was pleasantly surprised when I opened up the computer this morning to find a post from Kelly at http://rawarrior.com/. "This disease is similar to Lupus and no one says "Lupus arthritis." Changing the name of #Rheumatoid disease so it's not incorrectly referred to as "a type of arthritis." We are DOING it!". I don't know what it was about that post, but it stirred something inside of me. I couldn't wait to get the kids ready and out the door for school because my mind was racing and my fingers wanted to hit the keyboard running.
I cannot tell you how misunderstood this disease is. I have had the owner of a cross stitch shop say to me, "I have customers who have ra and they aren't this bad." I'm sorry, but I couldn't hold the loop in one hand and a needle between my thumb and any finger. Either their treatment is really working for them or you are confusing this with arthritis. I can't even hold a book open! And that is a big part of the problem. Everybody knows somebody with arthritis. And many don't know or understand the difference between rheumatoid arthritis and arthritis.
I know the difference. I feel the difference. I am reminded the difference each time I am sent for an echo cardiogram. Or each time I experience back pain and have to worry if I am getting another kidney infection. When I hit a wave of exhaustion I know I wouldn't otherwise if not for ra. The almost daily low grade temps remind me. And of course, the relentless pain...that screams at me. What should be simple daily tasks and the difficulty doing them remind me.
I, and many others, I am sure, am my own worst enemy. I am too proud. I do not want to ask for help or have to explain why I can't do something. Partially because I know, for a fact, that RA is terribly misunderstood. It is a disease. One that I live with daily. I often feel like, because ra is so misunderstood, that people suspect that I am just being lazy which is something I am far from.
But, it has occurred to me recently, if I don't care of myself, one of my biggest fears surely will come true. Being a burden. I don't want to be any more of a burden to my family than I have to be. So I have to do some things to make this happen. One of those (**hard swallow to clear the lump) is to embrace rheumatoid arthritis. It is mine and all mine. And it is up to me on how I choose to handle it. By handle it, I mean fight it with all I have got. And that means, making myself the healthiest me I can be even with RA.
I don't care what anyone thinks my RA is like. Because, I assure you, it isn't just arthritis. What anyone can do, is get in my face and ask me what I have done to change the course of what my RA has or will do to me. Go ahead, challenge me. I guarantee you, I will fight harder than I ever have to make this disease the best it can be, for me.
Every time I walk into my wonderful (I say that with a smile, because I am lucky to have them) rheumatologist's office, it is in my face what is in store for me. Would I rather have a walker or cane than a wheelchair. You betcha. That means, get this weight off. Which means a healthier heart (did you know that heart disease is also a major risk and reality for people with RA?). I understand that I may still wind up in a wheelchair, but it won't be without kick ass effort.
There will be people who underestimate what this disease really means and what toll it takes on me. That doesn't mean I have to. And I won't. But I will fight for myself and my family. When I die, I want my family to be proud of who I was and how hard I fought to be with them healthy for as long as I could. I don't want to be remembered as a burden. I can't think of one good reason not to fight this as hard as I can.
I have been told I have a gift in writing. I will use that gift to heal my own wounds and continue to reach out to others. It is so important to be and feel understood. The link to the following song and lyrics speaks volumes to and about myself as well as many others. I am not sure how it ties into this post but I found it going round and about in my head as I wrote. I think that we all need to hear these words sometimes.
Wednesday, February 1, 2012
A Time to Rest
It has been a while since I have been here to write. Thank you to my loyal readers and supporters for checking in. Three weeks ago, I started with the infusions. The day I had my first one, I was in rough shape and expected far too much of myself and the new treatment. It wiped me out for DAYS! I can't say that I noticed much. Initially, I thought my hands were feeling better, but that quickly fleeted. My second infusion was last week and I was told that it could take a couple of months :0(. Onward and upward. I am still better than 2 (almost 3) years ago and as of a year ago, this pain has a name. Two, actually. And I think I have found a good fit with my new rheumatologist. I'm in a good place, considering.
We live and we learn. I live and love with daily chronic pain. I push myself to limits I have learned not to expect of others. There will always be those who wont try or want to understand my limitations (which are exceptionally high as I expect more from myself...to keep myself from expecting any less!). It is not up to them to set my limits for me. I got that. From now on, I totally got that. I can no longer wait for others to recognize where my limits are simply because I tell myself that if they think I can, then I should.
This blog started with an epiphany. It is the one constant in almost every post. This is my voice, my art and my very exposed heart. What is the epiphany this time? When the doctor says, "it is too much. You need to rest. Without rest, [recovery and gains] will be lost.", it means...REST! Nobody can do it for me. Maybe it is about time I start acting like I feel...sick. For just a bit. Only a bit. I owe this to myself, to my husband and to my children. I am not giving in to it. I am not failing. I am not weak. I am simply doing what anybody with the flu (which is the best, simple, example I can give to this) would do. Recover and get stronger. I got my fight on. LOL! My body ALWAYS has it's fight on!! Damn conflicted immune system.
I am three weeks out from the next infusion. I will be spending the time up until and maybe some past, doing what I want to do. I have so much to be thankful for. I have my husband, children friends and family who faithfully have my back. Fingers willing, I will be back here more often. Know that I read and appreciate EVERY comment and email even if there is no response. They are all very important and inspiring and I don't want to place a value of one over another, so if I can't respond to all, I won't at all. I know you understand and thank you for that as well.
Stay well, strong and full of faith!
We live and we learn. I live and love with daily chronic pain. I push myself to limits I have learned not to expect of others. There will always be those who wont try or want to understand my limitations (which are exceptionally high as I expect more from myself...to keep myself from expecting any less!). It is not up to them to set my limits for me. I got that. From now on, I totally got that. I can no longer wait for others to recognize where my limits are simply because I tell myself that if they think I can, then I should.
This blog started with an epiphany. It is the one constant in almost every post. This is my voice, my art and my very exposed heart. What is the epiphany this time? When the doctor says, "it is too much. You need to rest. Without rest, [recovery and gains] will be lost.", it means...REST! Nobody can do it for me. Maybe it is about time I start acting like I feel...sick. For just a bit. Only a bit. I owe this to myself, to my husband and to my children. I am not giving in to it. I am not failing. I am not weak. I am simply doing what anybody with the flu (which is the best, simple, example I can give to this) would do. Recover and get stronger. I got my fight on. LOL! My body ALWAYS has it's fight on!! Damn conflicted immune system.
I am three weeks out from the next infusion. I will be spending the time up until and maybe some past, doing what I want to do. I have so much to be thankful for. I have my husband, children friends and family who faithfully have my back. Fingers willing, I will be back here more often. Know that I read and appreciate EVERY comment and email even if there is no response. They are all very important and inspiring and I don't want to place a value of one over another, so if I can't respond to all, I won't at all. I know you understand and thank you for that as well.
Stay well, strong and full of faith!
Saturday, January 7, 2012
The Good Doctor
New day. Yesterday, through pain and frustration, I vented my way through a post. After going to my appointment at the rheumatologist, I felt much better. I was still in pain, but emotionally, I was better. And that can make quite the difference.
So, the update. First, he apologized for the delay in the insurance approval. The way he delivered the apology, I couldn't be mad. It is a new relationship with a great start. I like him a lot. I also like the way he treats his staff. As if they were his equals. with respect and friendly chatter. He understands he needs them to do his job well. To me, that says that he understands people.
He explained that we had to flush the Humira out of my system before starting the new treatment. He asked about where I was hurting and gently checked everything out. He pointed out was fibromyalsia and what was ra. He acknowledged my "puffy" and hot spots. He explained that everything was flaring because my body is under stress and attack. To combat that, he is increasing steroid dosage until we can get the infusions started. He offered the explanation that 50% of patients fail their first treatment. And then assured me that there will be a time frame put on the next one for success and a plan if it fails. He said and did all the right things and delivered it with compassion and kindness.
The last things he did, meant a lot. He came back out to me as I was at the receptionists desk making my next appointment and said, "I can't wait to see you in two months and meet the person you used to be. I am really excited for you." Wow.
I am thankful for the friends who urged me to find a new doctor. And that I finally realized I was worth it. None of this is just in my head.
So, the update. First, he apologized for the delay in the insurance approval. The way he delivered the apology, I couldn't be mad. It is a new relationship with a great start. I like him a lot. I also like the way he treats his staff. As if they were his equals. with respect and friendly chatter. He understands he needs them to do his job well. To me, that says that he understands people.
He explained that we had to flush the Humira out of my system before starting the new treatment. He asked about where I was hurting and gently checked everything out. He pointed out was fibromyalsia and what was ra. He acknowledged my "puffy" and hot spots. He explained that everything was flaring because my body is under stress and attack. To combat that, he is increasing steroid dosage until we can get the infusions started. He offered the explanation that 50% of patients fail their first treatment. And then assured me that there will be a time frame put on the next one for success and a plan if it fails. He said and did all the right things and delivered it with compassion and kindness.
The last things he did, meant a lot. He came back out to me as I was at the receptionists desk making my next appointment and said, "I can't wait to see you in two months and meet the person you used to be. I am really excited for you." Wow.
I am thankful for the friends who urged me to find a new doctor. And that I finally realized I was worth it. None of this is just in my head.
Friday, January 6, 2012
A New Hope
It could happen tomorrow, technically today. In a couple days it will be four weeks since my last injection. They are calling this the "wash-out" period. All I know is that I cannot wait for some relief. I could be getting my first infusion today. I've been told that I may feel immediate relief. I cannot imagine.
Yesterday, I used a couple sprays of hairspray, the pump kind. A couple. My joints in my index finger felt as if I had jammed them into a wall. Actually, it kinda reminded me of the times I caught a softball wrong and jammed my finger then. I removed a couple of ornaments from our Christmas tree and my neck and shoulders are reminding me of those movements tonigh. These things don't happen with healthy joints.
I am tired, exhausted. Not as much as the week of Christmas and New Years, but more than I would like to be. Thankfully, the weakness hasn't settled in and I am hoping that won't be the case before new treatment begins. None of this stops me from doing all I have to do in a day. There really isn't a choice.
These past few weeks have made it clear that the Humira injections I had been enduring over the past year, weren't doing all they could could. I just didn't know enough to, know. I wasn't sure how I was supposed to feel. It was doing something, but not enough. I am more in control this time. I have a new rheumatologist with whom, I think, there is already a better rapport with. My second visit, he brought in another rheum from the practise. I was sold. This is where I need to be. And then they said the right words for me: "and if this doesn't work, we are going to try that. If that doesn't then this..." They have a freaking plan! OMG! A plan. In the end, if nothing works, I know I will still be better with the plan. Something to look forward to an be hopeful for. Nobody likes to wander down a path unprepared. As my baby boy would say, "Dis is my spot!". Game on!
This is a new year with new opportunities. I cannot wait to do the simple things in life that most of us take for granted. Who knew tapping my foot to the music could cause so much pain? Regardless, I am very thankful for the small steps forward. A year ago, we were all ecstatic that I could dress to go to the grocery store. Even if I only made it there for 10 minutes. That was progress. Now I am able to drive myself, park, shop and load the car. That is the difference a diagnosis makes. So very thankful.
To my friends out there who are also searching for relief and trying to take this one day at a time...and not think about what lies ahead, I cannot stress enough how together we all are in this. Never alone, even though many times, it feel as though we are.
Yesterday, I used a couple sprays of hairspray, the pump kind. A couple. My joints in my index finger felt as if I had jammed them into a wall. Actually, it kinda reminded me of the times I caught a softball wrong and jammed my finger then. I removed a couple of ornaments from our Christmas tree and my neck and shoulders are reminding me of those movements tonigh. These things don't happen with healthy joints.
I am tired, exhausted. Not as much as the week of Christmas and New Years, but more than I would like to be. Thankfully, the weakness hasn't settled in and I am hoping that won't be the case before new treatment begins. None of this stops me from doing all I have to do in a day. There really isn't a choice.
These past few weeks have made it clear that the Humira injections I had been enduring over the past year, weren't doing all they could could. I just didn't know enough to, know. I wasn't sure how I was supposed to feel. It was doing something, but not enough. I am more in control this time. I have a new rheumatologist with whom, I think, there is already a better rapport with. My second visit, he brought in another rheum from the practise. I was sold. This is where I need to be. And then they said the right words for me: "and if this doesn't work, we are going to try that. If that doesn't then this..." They have a freaking plan! OMG! A plan. In the end, if nothing works, I know I will still be better with the plan. Something to look forward to an be hopeful for. Nobody likes to wander down a path unprepared. As my baby boy would say, "Dis is my spot!". Game on!
This is a new year with new opportunities. I cannot wait to do the simple things in life that most of us take for granted. Who knew tapping my foot to the music could cause so much pain? Regardless, I am very thankful for the small steps forward. A year ago, we were all ecstatic that I could dress to go to the grocery store. Even if I only made it there for 10 minutes. That was progress. Now I am able to drive myself, park, shop and load the car. That is the difference a diagnosis makes. So very thankful.
To my friends out there who are also searching for relief and trying to take this one day at a time...and not think about what lies ahead, I cannot stress enough how together we all are in this. Never alone, even though many times, it feel as though we are.
Tuesday, December 27, 2011
Hanging in There
I just wanted to wish everyone a (belated) Merry Christmas. I also wanted to acknowledge the comments and e-mails I have received from several of you. Thank you and I will respond shortly. Currently, things are a bit rough and to type this is quite the painful chore. I over-did it for Christmas festivities. In addition, I have been taken off the Humira injections in preparation for the infusions that are to start January 6th...ugh. That is a long time away in RA land. But, I am doing fine and taking it slow and easy. I am very much looking forward to the infusion. I hear that I may actually feel a difference THAT DAY. The only time I ever felt instant relief was when I was put on a good dose of steroids for the first time.
Your comments and e-mails always mean so much. To be able to reach out and have you all reach out to me is beyond comforting. Thank you so much for your continued support. I wish all of you the moments of relief we all hope for. I will be back soon! Until then, be kind to yourselves.
Rachel
Your comments and e-mails always mean so much. To be able to reach out and have you all reach out to me is beyond comforting. Thank you so much for your continued support. I wish all of you the moments of relief we all hope for. I will be back soon! Until then, be kind to yourselves.
Rachel
Friday, December 16, 2011
Shoe Stress
When you are fat/obese/overweight/large/big-boned or whatever you want to call it, there are restrictions on fashion. I personally believe that there is a certain point where anything spandex should not be an option(the exception being when we are exercising and working to shed those L B S's!~). And if you choose to wear a thong or g-string, you should be sure that the strings are visible...and not lost in the folds of beautiful fat. Those are rules that I have set for myself. If, by some chance you feel good wearing these items, then by all means, go for it.
I have been fortunate (or unfortunate) to be on both sides of the scale. At one point in my life,the numbers on the scale weren't an issue. Pretty much the only time they affected me was when girlfriends would talk about what they weighed. I may have checked then. Honestly, I was so over the diet/scale talk since in my house, my parents were serial yo-yo diet offenders. I had no intentions of following in their footsteps.
Going clothes shopping was fun and I never thought twice about what size to pull from the rack. Crazy enough, the fashion at that time was...HUGE! Meaning, you wore your father's t-shirts and pulled your pants down onto your hips. Then, Hammer pants were all the rage with cropped tops. After graduation, grunge was the in-thing. I wore it all. And what a WASTE! Those styles hid a figure I had no reason to be ashamed of (though I am sure I wasn't in love with at least one part of my body!).
For more than 15 years, clothes shopping is not fun. When you are overweight, the options and styles are fewer. We are not all shaped the same and sometimes, it can feel like you are wearing a tent. Or worse, that all anybody thinks is that a tent is all you deserve to wear. I am picky and when I am out, I do not want to be wearing anything with an elastic band! So it is terribly hard for me to dress this body. There are some favorites...Target has jeans that come in SHORT sizes! Though, I am limited to color and style(that is not the case if you are a size 16 or smaller!). But they fit and I don't have to cut off the length. That is important, since my shoe selection has recently been limited as well. Kohls also has a wonderful selection. Most times, I can go there knowing that I will find something I like, that fits!
Of all my close friends, there is only one that I can think of that loves shoes as much as or more than I do. I simply love shoes. And while in the past I was limited slightly because of knee issues, I would always find a cute shoe or boot that I loved. This is no longer the case. In the summer, my feet were so swollen that I couldn't fit into ANY shoe. Even the ugly crock. Ugh. Flat shoes are a huge problem, since they offer no support or cushion. And yes, I have tried the insoles. They used to work, but not any more. I know that there are stores out there that offer shoes for people with arthritis. But they offer no style. Sadly, I may have to succumb to this because quality of life is becoming an issue.
I understand why the companies that offer these shoes limit style. I am sure it would be pricey to try and keep up with the trends. But, for goodness sakes, at this point, I would pay a bit more for a fashionable shoe that I can comfortably wear! For the first time EVER...I spent over $80 for a pair of shoes. They offered comfort and some basic style. I am to the point were I HAVE to spend more on a better made shoe. But they can't be heals, or too flat, they can't have straps. Basically, they can't be all too cute.
Tomorrow, we are going on a shopping trip with a large group of close friends. I will do my damnedest to keep up(a wheelchair is NOT an option for this girl!). This means, I have to ruin my ensemble by wearing sneakers. That most likely not get me more than a maximum of 20 minutes at a time on my feet. But they are my only option. I feel the same about sneakers with the wrong outfit as I do about spandex and g-strings. At some point, they should not be worn.
I have overcome the clothing issues. But my feet...I just can't get around this one. Sometimes, they hurt to touch. They hurt so bad that I want nothing more to have them rubbed. I have learned to not ask, because to have them touched is sometimes unbearable. I feel like I have overcome and found a way around so much, but this...I just can't. And for now, there is nothing that can be done. Except to find that perfect pair of shoes that is not a sneaker. That can make me feel pretty. That doesn't result in me walking like a 100 year old woman clinging tightly to her husbands arm and trying to hide with each agonizing step, the pain this is most likely written all over her face.
To some, this may seem like such a small issue. And they are right. I could just wear sneakers all day(even though they aren't all too much a comfy solution either), every day and be happy that I can still walk, even if for a little bit. But, there is something about finding that cute, perfect and stylish shoe.
There has been a huge shift in the self-image department for me. This is the first year, EVER that I included myself in our Christmas card picture. In the past, I may have been in one, but only close family saw it. This is who I am. Steroids and all. RA and all. This is me. Larger than I want to be...but loved more than I have ever been in my life. Accepted more. Fat, bloated and slower than ever. This is who I am.
I don't mind going clothes shopping any longer. I am sure the 25# loss and shrinking boobs have something to do with it. But I don't mind it like I used to. Until, I need to find the perfect pair of shoes. It is hard not to get a little down when your hair and make-up look great and you have a cute outfit...that you have to finish off with a pair of...sneakers.
Because I want to enjoy my friends and try to get into the holiday spirit, I will lace up the New Balance beauties and suck it up. At the end of the night, the laughter I am sure to experience will likely be worth the vicodin and day or 2 down with feet elevated. My search will continue for the perfect shoe.
I have been fortunate (or unfortunate) to be on both sides of the scale. At one point in my life,the numbers on the scale weren't an issue. Pretty much the only time they affected me was when girlfriends would talk about what they weighed. I may have checked then. Honestly, I was so over the diet/scale talk since in my house, my parents were serial yo-yo diet offenders. I had no intentions of following in their footsteps.
Going clothes shopping was fun and I never thought twice about what size to pull from the rack. Crazy enough, the fashion at that time was...HUGE! Meaning, you wore your father's t-shirts and pulled your pants down onto your hips. Then, Hammer pants were all the rage with cropped tops. After graduation, grunge was the in-thing. I wore it all. And what a WASTE! Those styles hid a figure I had no reason to be ashamed of (though I am sure I wasn't in love with at least one part of my body!).
For more than 15 years, clothes shopping is not fun. When you are overweight, the options and styles are fewer. We are not all shaped the same and sometimes, it can feel like you are wearing a tent. Or worse, that all anybody thinks is that a tent is all you deserve to wear. I am picky and when I am out, I do not want to be wearing anything with an elastic band! So it is terribly hard for me to dress this body. There are some favorites...Target has jeans that come in SHORT sizes! Though, I am limited to color and style(that is not the case if you are a size 16 or smaller!). But they fit and I don't have to cut off the length. That is important, since my shoe selection has recently been limited as well. Kohls also has a wonderful selection. Most times, I can go there knowing that I will find something I like, that fits!
Of all my close friends, there is only one that I can think of that loves shoes as much as or more than I do. I simply love shoes. And while in the past I was limited slightly because of knee issues, I would always find a cute shoe or boot that I loved. This is no longer the case. In the summer, my feet were so swollen that I couldn't fit into ANY shoe. Even the ugly crock. Ugh. Flat shoes are a huge problem, since they offer no support or cushion. And yes, I have tried the insoles. They used to work, but not any more. I know that there are stores out there that offer shoes for people with arthritis. But they offer no style. Sadly, I may have to succumb to this because quality of life is becoming an issue.
I understand why the companies that offer these shoes limit style. I am sure it would be pricey to try and keep up with the trends. But, for goodness sakes, at this point, I would pay a bit more for a fashionable shoe that I can comfortably wear! For the first time EVER...I spent over $80 for a pair of shoes. They offered comfort and some basic style. I am to the point were I HAVE to spend more on a better made shoe. But they can't be heals, or too flat, they can't have straps. Basically, they can't be all too cute.
Tomorrow, we are going on a shopping trip with a large group of close friends. I will do my damnedest to keep up(a wheelchair is NOT an option for this girl!). This means, I have to ruin my ensemble by wearing sneakers. That most likely not get me more than a maximum of 20 minutes at a time on my feet. But they are my only option. I feel the same about sneakers with the wrong outfit as I do about spandex and g-strings. At some point, they should not be worn.
I have overcome the clothing issues. But my feet...I just can't get around this one. Sometimes, they hurt to touch. They hurt so bad that I want nothing more to have them rubbed. I have learned to not ask, because to have them touched is sometimes unbearable. I feel like I have overcome and found a way around so much, but this...I just can't. And for now, there is nothing that can be done. Except to find that perfect pair of shoes that is not a sneaker. That can make me feel pretty. That doesn't result in me walking like a 100 year old woman clinging tightly to her husbands arm and trying to hide with each agonizing step, the pain this is most likely written all over her face.
To some, this may seem like such a small issue. And they are right. I could just wear sneakers all day(even though they aren't all too much a comfy solution either), every day and be happy that I can still walk, even if for a little bit. But, there is something about finding that cute, perfect and stylish shoe.
I don't mind going clothes shopping any longer. I am sure the 25# loss and shrinking boobs have something to do with it. But I don't mind it like I used to. Until, I need to find the perfect pair of shoes. It is hard not to get a little down when your hair and make-up look great and you have a cute outfit...that you have to finish off with a pair of...sneakers.
Because I want to enjoy my friends and try to get into the holiday spirit, I will lace up the New Balance beauties and suck it up. At the end of the night, the laughter I am sure to experience will likely be worth the vicodin and day or 2 down with feet elevated. My search will continue for the perfect shoe.
Monday, December 12, 2011
The Gift of Understanding
All Sunday I was burning to sit and write. Usually when that happens, it just...happens. I sit and I write with little to no editing. It's easy. Last night, I sat and couldn't get anything out. Anything that made sense. I didn't want it to be about whining or complaining. I wanted it to inspire others to be more understanding. To stop and consider for a moment where someone else is at. Instead of clouding it with where they are at and carrying on with assumptions. In the end, I wanted to encourage everyone reading this to go forth and put themselves in another's shoes. Ultimately, I wanted everyone to make an effort to practise The Golden Rule.
This post would not have happened had I not read some posts and links on facebook. One post read something like, 'do not assume to know what is going on in my home...'. And then there were the last two posts from rawarrior.com. One was a public service announcement (http://rawarrior.com/ra-is-not-arthritis-psa-on-rheumatoid-arthritis/) and the other was from her blog which spoke on some misconceptions of RA. It seems that there are many out there having some of the very same feelings I am. Some for the same and many for different reasons.
This is supposed to be the season of giving. What we need to give more of, has nothing to do with what is in your wallet, the bottom of your purse or the color or interest rate of the card you swipe. Understanding is clearing something that is needed by many. Before you sit and judge someone, put yourself in their situation for a moment. And then ask yourself and be honest about how you would feel or react if it were you. Those who are not honest think that [in most cases]they would deal better...I challenge that. They should ask themselves if their arrogance comes from knowing that, indeed, they could not or would not be able to handle it half as well. This weekend, I understood that to be very true.
RA is NOT just arthritis! Damn it. It does come with greater complications and concerns. There are several degrees that can affect each person differently. Not all drugs work for everyone. Sometimes they don't work, at all. I didn't just wake up one day and decide to change who I was to the core. I got knocked on my ass. And even at this stage, I am still functioning at a greater level that some ignorant people could ever wish. I push myself to achieve more than I physically can...almost every single day. I am chomping at the bit for my body to be strong enough/healthy enough to keep up with my over-active brain. I fight off fatigue, exhaustion and low-grade fevers all the time to accomplish all I want and need to. Remember what it feels like to be home, in bed with a cold or the flu? That run-down, achy all over feeling? That is almost every day for me. It is the norm. I don't get to call in. I push through. I am every employers dream, in that aspect. My body is under constant attack...from itself. It is almost always in fight mode. I take several drugs to suppress this. I self-inject and soon will start infusions. This is something almost every person you know with an autoimmune disease does. This is something they live with every day of their lives. I write this for them as well.
I heard it this weekend. "I know LOTS of people who have ra and they are fine". Fair warning, next time I hear that...duck! Who the hell do you think you are? 'Cause here is a fact, I have RA and not many people (aside from some family and friends), really know how I am. It is an effort, but damn it, I'll make that effort to appear as though I am perfectly..."normal". Yeah, to those I encounter for a few short moments in a day, I am "fine" too. I assure you, fine is far from fact. How dare you say this to me? As if I am not trying enough or sucking it up enough? You say this because you really don't know me very well. Or, because you are intimidated by the person I am despite having RA. That's why. Screw you.
For a few short moments, I felt weak. Then I heard my husband calmly commenting, coming to my aid. "How long do you have to lie there before getting out of bed in the morning?/How many times have you gone to the ER for kidney/heart/lung issues related to your arthritis?/What medicines are you taking and do you have to have your organs checked for damage done to them because of these meds?" He had others and I know he was trying to prove a point. In this case, he was beating a dead horse. Because there is no understanding. And there never will be. I have to learn to accept that. It is just hard for me to when I feel that someone thinks that I am not trying or that I am making something out of nothing.
Too often, in life, we make assumptions. What I am asking in this season of giving, is that we all make an effort to assume a little less and try to understand a little more. Learn a little more. Love a little more. Be kind. That's what I tell my kids. The truth is, none of us can truly ever understand what it is like to be in someone else's shoes. But, we can try. There is no benefit if we don't. No lesson's learned, no respect earned.
This post would not have happened had I not read some posts and links on facebook. One post read something like, 'do not assume to know what is going on in my home...'. And then there were the last two posts from rawarrior.com. One was a public service announcement (http://rawarrior.com/ra-is-not-arthritis-psa-on-rheumatoid-arthritis/) and the other was from her blog which spoke on some misconceptions of RA. It seems that there are many out there having some of the very same feelings I am. Some for the same and many for different reasons.
This is supposed to be the season of giving. What we need to give more of, has nothing to do with what is in your wallet, the bottom of your purse or the color or interest rate of the card you swipe. Understanding is clearing something that is needed by many. Before you sit and judge someone, put yourself in their situation for a moment. And then ask yourself and be honest about how you would feel or react if it were you. Those who are not honest think that [in most cases]they would deal better...I challenge that. They should ask themselves if their arrogance comes from knowing that, indeed, they could not or would not be able to handle it half as well. This weekend, I understood that to be very true.
RA is NOT just arthritis! Damn it. It does come with greater complications and concerns. There are several degrees that can affect each person differently. Not all drugs work for everyone. Sometimes they don't work, at all. I didn't just wake up one day and decide to change who I was to the core. I got knocked on my ass. And even at this stage, I am still functioning at a greater level that some ignorant people could ever wish. I push myself to achieve more than I physically can...almost every single day. I am chomping at the bit for my body to be strong enough/healthy enough to keep up with my over-active brain. I fight off fatigue, exhaustion and low-grade fevers all the time to accomplish all I want and need to. Remember what it feels like to be home, in bed with a cold or the flu? That run-down, achy all over feeling? That is almost every day for me. It is the norm. I don't get to call in. I push through. I am every employers dream, in that aspect. My body is under constant attack...from itself. It is almost always in fight mode. I take several drugs to suppress this. I self-inject and soon will start infusions. This is something almost every person you know with an autoimmune disease does. This is something they live with every day of their lives. I write this for them as well.
I heard it this weekend. "I know LOTS of people who have ra and they are fine". Fair warning, next time I hear that...duck! Who the hell do you think you are? 'Cause here is a fact, I have RA and not many people (aside from some family and friends), really know how I am. It is an effort, but damn it, I'll make that effort to appear as though I am perfectly..."normal". Yeah, to those I encounter for a few short moments in a day, I am "fine" too. I assure you, fine is far from fact. How dare you say this to me? As if I am not trying enough or sucking it up enough? You say this because you really don't know me very well. Or, because you are intimidated by the person I am despite having RA. That's why. Screw you.
For a few short moments, I felt weak. Then I heard my husband calmly commenting, coming to my aid. "How long do you have to lie there before getting out of bed in the morning?/How many times have you gone to the ER for kidney/heart/lung issues related to your arthritis?/What medicines are you taking and do you have to have your organs checked for damage done to them because of these meds?" He had others and I know he was trying to prove a point. In this case, he was beating a dead horse. Because there is no understanding. And there never will be. I have to learn to accept that. It is just hard for me to when I feel that someone thinks that I am not trying or that I am making something out of nothing.
Too often, in life, we make assumptions. What I am asking in this season of giving, is that we all make an effort to assume a little less and try to understand a little more. Learn a little more. Love a little more. Be kind. That's what I tell my kids. The truth is, none of us can truly ever understand what it is like to be in someone else's shoes. But, we can try. There is no benefit if we don't. No lesson's learned, no respect earned.
Thursday, October 6, 2011
Party In My Closet
I just had a party in my closet. At 7:00 a.m. I woke up and decided to try the scale. Holy crap! Another 5lbs! FIVE! I usually don't get excited about this until I see it stick for a couple weeks. But after the jeans episode this weekend (I was surprised to find that I could glide into them effortlessly), I decided that I should just check. Five pounds. Gone. Zapped.
This was the kind of party where only I can hear the awesome music, because it's all in my head. This time I let my fingers skip over the "safe" tops and shirts and stop on the "If only" ones. A couple of them fit so well that they were almost a bit too big in some areas. I was stunned. There was a day that I would pull them on with great hope and know before they got over my head that it was going to be a sad fit. Now, I wondered if they were even the same shirts. I pulled on another. This one fit better, but not quite right. Yet. I have decided that this will be the one I will wear for Thanksgiving. The feeling I had was entirely different than the last time I tried it on. I was optimistic. I can do this.
Then, I looked down at my feet and ankles. Hello there! I have toes, not sausages. And LOOK! There's my ankle bone. Oh! Wowwee! Check out those beautiful bulging veins! Let's try those cute slip on Sketchers that haven't fit in over a year. YES! There is actually loose skin that wrinkles up when I flex my feet. I love it. Because it reminds me of how swollen my feet have been for so long.
I invite my loving husband to the party. "Look!", I tell him. He's excited, but not nearly as much as I am. He's more concerned about how badly my hands have been hurting and wonders why my feet are so much better. I don't want to ruin the mood by admitting that, although my feet look a-may-zing!, they are still very painful. Why worry him? I have come to terms with the facts. This is what life is like. What it will be like. It has taken me a long time to truly accept this. And this is my body. To ask or expect him to accept it at this point is unrealistic. I encourage him to check out my curves and I stick out my right foot for him to admire once more. How I wish I could call my girlfriends, but it is too early. They would get this and not make it heavy with well intended worry.
If only. If only I could get off these pesky steroids. Weight loss and body shaping would happen with greater ease. Even the doc told me this last week. "Your blood pressure is down (something I have NEVER struggled with. It has always been crazy low. Until RA & steroids.) and your weight is down. That is great. I want you to loose a lot more weight though. And that will happen if we can get you off the steroids and get you moving more. But for now, we can't get you moving more until we get everything else under control. Once that happens, you will find the weight coming off faster. For now, South Beach lifestyle and patience.". You got it, doc. We are on the same page. For now. For now, the steroids stick. I am on a dose that doesn't mask the pain, but allows me to move. I could take more, but I don't want to. I want to get off of them. I love steroids and I hate them at the same time.
In the meantime, party in my closet. :0)
This was the kind of party where only I can hear the awesome music, because it's all in my head. This time I let my fingers skip over the "safe" tops and shirts and stop on the "If only" ones. A couple of them fit so well that they were almost a bit too big in some areas. I was stunned. There was a day that I would pull them on with great hope and know before they got over my head that it was going to be a sad fit. Now, I wondered if they were even the same shirts. I pulled on another. This one fit better, but not quite right. Yet. I have decided that this will be the one I will wear for Thanksgiving. The feeling I had was entirely different than the last time I tried it on. I was optimistic. I can do this.
Then, I looked down at my feet and ankles. Hello there! I have toes, not sausages. And LOOK! There's my ankle bone. Oh! Wowwee! Check out those beautiful bulging veins! Let's try those cute slip on Sketchers that haven't fit in over a year. YES! There is actually loose skin that wrinkles up when I flex my feet. I love it. Because it reminds me of how swollen my feet have been for so long.
I invite my loving husband to the party. "Look!", I tell him. He's excited, but not nearly as much as I am. He's more concerned about how badly my hands have been hurting and wonders why my feet are so much better. I don't want to ruin the mood by admitting that, although my feet look a-may-zing!, they are still very painful. Why worry him? I have come to terms with the facts. This is what life is like. What it will be like. It has taken me a long time to truly accept this. And this is my body. To ask or expect him to accept it at this point is unrealistic. I encourage him to check out my curves and I stick out my right foot for him to admire once more. How I wish I could call my girlfriends, but it is too early. They would get this and not make it heavy with well intended worry.
If only. If only I could get off these pesky steroids. Weight loss and body shaping would happen with greater ease. Even the doc told me this last week. "Your blood pressure is down (something I have NEVER struggled with. It has always been crazy low. Until RA & steroids.) and your weight is down. That is great. I want you to loose a lot more weight though. And that will happen if we can get you off the steroids and get you moving more. But for now, we can't get you moving more until we get everything else under control. Once that happens, you will find the weight coming off faster. For now, South Beach lifestyle and patience.". You got it, doc. We are on the same page. For now. For now, the steroids stick. I am on a dose that doesn't mask the pain, but allows me to move. I could take more, but I don't want to. I want to get off of them. I love steroids and I hate them at the same time.
In the meantime, party in my closet. :0)
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