My husband recently received a new diagnosis. It's quite interesting how the whole diagnosis went about, well not interesting per se but quite typical of my husband. He had mentioned that he had some sort of wart-like sore on the skin between his thumb and forefinger and that he picked at it and it just got worse. When I finally looked at it, it looked very cracked and looked like it could have been very well infected. I immediately told him he needed a doctor because it looked bad and I didn't want him losing a hand (half-jokingly). A week went by and since I hadn't heard anything else about the hand I assumed that it had healed up on it's own and everything was great.
"Honey, look at my hand"
"GAH! what the heck??! did you not go the doctor?"
"No, and look at my finger on my other hand"
By then, I knew something wasn't right and he had some kind of problem going on. I really had no idea what it was but I knew he had to get it checked out. I took it upon myself to find him a dermatologist (I referred him to mine but it was too out of the way for him so I had to find him another one).
Long story short, after a couple of dermy appointments, and 2 biopsys later, he received a diagnosis of psoriasis. Since then, he has also had elbow rashes and one on his lower 'erm' backside.
Another fact about psoriasis is that 1 in 20 actually develop psoriatic arthritis. Yes, I've read up on it and yes it's pretty bad. My husband has been complaining of back pain for a couple of years and has maxed out his chiropractor allowances through our insurance. He has also mentioned that he also has joint pain when I say I'm hurting. I mentioned before that I thought it was his was of being a little facetious but one has to wonder now. I'm trying to get him in to see a rheumatologist. He told me he will just tough it out. I don't think it's such a good idea given what I have read about psoriatic arthritis and it's progression. I guess I will just have to keep working on him.
He doesn't worry about much, that is one of the reasons I love him so much. He is so carefree, but I hate to take the burden on myself all the time. Another issue I worry about is our son. I did have concerns for him when it was just me that was sick and what I would pass down onto him but now I am quite concerned (and feel so guilty).
11.08.2011
10.27.2011
It Takes a Special Person
I consider myself lucky. I didn't always think like that. In fact a few years ago, I had a major chip on my shoulder. A chip I believed was justified because, well, my husband just didn't care that I was sick. I couldn't have been more wrong.
Those of us know what it's like to live with a chronic illness day in and day out. It's a battle and we muster what we can to get through it mostly only worrying about today. We deal with the pains, the fatigue, even the more serious ailments if that's happening at the time but mostly it's just about getting through until tomorrow which will be better because, well, it has to.
For most spouses and partners of people with chronic illness, it is not that cut and dry. Living and loving someone whose faced with an uncertain future hits hard on them not only on a physical level but also on an emotional level. Some may not show that emotion because they believe they must be the strong one. They keep it in. Unfortunately, sometimes we (the sick ones) mistake that for disregard. Sometimes we need to step back and feel what it may be like in their shoes, the physical pain may not be there but their heart may be hurting out of helplessness or sympathy. I know for me personally, it is so much easier for me to be in pain than to see the people I love in pain.
My husband may not outright ask me about how I'm feeling all the time (although he does ask me from time to time as I do him). And you know unless I'm in really bad shape, I don't want it to be the topic of our conversations all the time. A few examples of what he does do is remind me that I really should be in bed because I need my rest or rubs my back when he thinks I'm sleeping.
I have felt the guilt more than once just about being sick. And even though I fall into the mild to moderate category, my disease is very unpredictable so I laid it all on the line for my husband about the worst possible things that could happen to me and the aftermath. I gave him outs, outs, and more outs... I never wanted him to feel like he should be the one to suffer from this unfortunate situation. That he could actually have a good life. He was hurt, hurt that I ever could think that he would ever do that. "We will always be together" he told me. Never again did I bring it up (not seriously anyway).
Unfortunately this isn't always the case. I've had friends with illnesses that had spouses that just couldn't deal with it. They were verbally and/or physically abusive, adulterers, or just took off and left all blaming the 'hardship of the disease'. This breaks my heart but I hope my story encourages those who have been through those situations or have yet to meet that special person that there are wonderful people out there that look past all of that and see the PERSON and not the disease.
For those of you with loved ones - partners, spouses, family:
-Stop and let them know how much you appreciate them for just being them.
-Don't let the disease be the 3rd wheel in your relationship, know it's there but don't let it have a spotlight.
Those of us know what it's like to live with a chronic illness day in and day out. It's a battle and we muster what we can to get through it mostly only worrying about today. We deal with the pains, the fatigue, even the more serious ailments if that's happening at the time but mostly it's just about getting through until tomorrow which will be better because, well, it has to.
For most spouses and partners of people with chronic illness, it is not that cut and dry. Living and loving someone whose faced with an uncertain future hits hard on them not only on a physical level but also on an emotional level. Some may not show that emotion because they believe they must be the strong one. They keep it in. Unfortunately, sometimes we (the sick ones) mistake that for disregard. Sometimes we need to step back and feel what it may be like in their shoes, the physical pain may not be there but their heart may be hurting out of helplessness or sympathy. I know for me personally, it is so much easier for me to be in pain than to see the people I love in pain.
My husband may not outright ask me about how I'm feeling all the time (although he does ask me from time to time as I do him). And you know unless I'm in really bad shape, I don't want it to be the topic of our conversations all the time. A few examples of what he does do is remind me that I really should be in bed because I need my rest or rubs my back when he thinks I'm sleeping.
I have felt the guilt more than once just about being sick. And even though I fall into the mild to moderate category, my disease is very unpredictable so I laid it all on the line for my husband about the worst possible things that could happen to me and the aftermath. I gave him outs, outs, and more outs... I never wanted him to feel like he should be the one to suffer from this unfortunate situation. That he could actually have a good life. He was hurt, hurt that I ever could think that he would ever do that. "We will always be together" he told me. Never again did I bring it up (not seriously anyway).
Unfortunately this isn't always the case. I've had friends with illnesses that had spouses that just couldn't deal with it. They were verbally and/or physically abusive, adulterers, or just took off and left all blaming the 'hardship of the disease'. This breaks my heart but I hope my story encourages those who have been through those situations or have yet to meet that special person that there are wonderful people out there that look past all of that and see the PERSON and not the disease.
For those of you with loved ones - partners, spouses, family:
-Stop and let them know how much you appreciate them for just being them.
-Don't let the disease be the 3rd wheel in your relationship, know it's there but don't let it have a spotlight.
10.25.2011
My Thought Today
Thoughts of tomorrow are nice to keep us hopeful that things will be better.Desperation of another chance but when thoughts of that chance turn grim that reality may not bring a better time, is it tomorrow that you need be?
I long for today, just once to feel free.
Free from the cursed eternity that's wrapped around me.
To live again like life felt before, I know that feeling no more.
But you see, whether today or tomorrow, it's all a gift - it must ALL be seen as a gift;
to remember, to always remember to... live for the moment, for I am still here.
-BD
10.21.2011
Is It Time To Break Up With My Doctor?
Warning: personal vent coming
For the last couple of visits, I felt the brush off. You know that feeling from when you are in the end of that relationship... where there is no interest there anymore.
"I don't know."
That is really not the words that a doctor should say out loud, even if its true. Now don't get me wrong, I totally respect a doctor that admits they don't have all the answers but please notice I have a period after that short sentence above. There is no, 'we will try and get to the bottom of this' OR 'I think we may want to consult with another doctor for more insight.' Nope, nothing... 'I don't know. Here are your med refills, see you in a few months' Please note this has not just started happening, has been going on for a little over a year.
Let me trace back a bit. I have been having extreme pain. Pain coming from my joints and even my chest. My tests show otherwise. Yes, my tests show NO inflammation. Now I don't know why this is but I'm just a patient but all I know is that I've been feeling unvalidated lately. There is no record of drug seeking from me so that is a non-issue (heck, I can't even stomach a tramadol much less any kind of narcotic for pain). BUT I'm in pain and even though you "don't know", can you please try and direct me to maybe someone who can try and find a clue?
I feel like I've been a good patient. I don't question anything (like I should). I comply through the exams. I NEVER argue but it's time I get tough about my health and quit letting these docs steamroll me so it's time to start anew.
Finding a new rheumatologist is always a gamble because you really don't know what you are going to end up with but I have rolled the dice and will be seeing a new one next month, wish me luck... I hope she's the ONE!
For the last couple of visits, I felt the brush off. You know that feeling from when you are in the end of that relationship... where there is no interest there anymore.
"I don't know."
That is really not the words that a doctor should say out loud, even if its true. Now don't get me wrong, I totally respect a doctor that admits they don't have all the answers but please notice I have a period after that short sentence above. There is no, 'we will try and get to the bottom of this' OR 'I think we may want to consult with another doctor for more insight.' Nope, nothing... 'I don't know. Here are your med refills, see you in a few months' Please note this has not just started happening, has been going on for a little over a year.
Let me trace back a bit. I have been having extreme pain. Pain coming from my joints and even my chest. My tests show otherwise. Yes, my tests show NO inflammation. Now I don't know why this is but I'm just a patient but all I know is that I've been feeling unvalidated lately. There is no record of drug seeking from me so that is a non-issue (heck, I can't even stomach a tramadol much less any kind of narcotic for pain). BUT I'm in pain and even though you "don't know", can you please try and direct me to maybe someone who can try and find a clue?
I feel like I've been a good patient. I don't question anything (like I should). I comply through the exams. I NEVER argue but it's time I get tough about my health and quit letting these docs steamroll me so it's time to start anew.
Finding a new rheumatologist is always a gamble because you really don't know what you are going to end up with but I have rolled the dice and will be seeing a new one next month, wish me luck... I hope she's the ONE!
10.03.2011
Challenges With Everyday Duties
Everyday I wake up with a mission, a list of, if you will, of my intended things to do that day... I mean aside from my nine to fiver of course.
These are personal items that I can take care of on my lunch break and especially when I get home from work. You know, going through mail, doing laundry, paying bills, balancing the checkbook... the NORMAL stuff people do. The night before, I pretty much have a few of them thought out and wake up with some more and even think of more on the way home from work.
But then...
I get home.
Needless to say, my "to do" list is growing and not shrinking. The frustrating part is that my mind could be ready to tackle these things, but not my body... but then sometimes the opposite is true. I have no other words other than FRUSTRATION! It makes me look and feel lazy, especially when I'm getting ready to call it a day and I run down all of the things that should have been done.
I don't know why and I just don't get it. I really do feel like I'm lazy but know deep down that I am just so exhausted and I just can't think or do anymore sometimes. BUT these are things that need to be done and I can't just let them go.
Any thoughts? Anyone in the same boat? What are your perspectives on this? If you have overcome this obstacle and have any pointers, I'd love to hear them!
These are personal items that I can take care of on my lunch break and especially when I get home from work. You know, going through mail, doing laundry, paying bills, balancing the checkbook... the NORMAL stuff people do. The night before, I pretty much have a few of them thought out and wake up with some more and even think of more on the way home from work.
But then...
I get home.
Needless to say, my "to do" list is growing and not shrinking. The frustrating part is that my mind could be ready to tackle these things, but not my body... but then sometimes the opposite is true. I have no other words other than FRUSTRATION! It makes me look and feel lazy, especially when I'm getting ready to call it a day and I run down all of the things that should have been done.
I don't know why and I just don't get it. I really do feel like I'm lazy but know deep down that I am just so exhausted and I just can't think or do anymore sometimes. BUT these are things that need to be done and I can't just let them go.
Any thoughts? Anyone in the same boat? What are your perspectives on this? If you have overcome this obstacle and have any pointers, I'd love to hear them!
9.30.2011
Working - How do you know when to say enough is enough?
How do you know when it's time to throw in the towel? I mentioned briefly about working and somewhat of the struggles in my Work and Uncertain Times post. I mean I manage to get through given the job I have. There is no way I could do a physical demanding job, that required me to be on my feet, or be outdoors, or extensive traveling, etc. But I do get those moments in my head, you know those thoughts that say... is that time coming, because things aren't getting better.
I have spoken to my husband and he's nervous. He makes decent money I guess, but we are not exactly debt free. He does say that if my health required me to stop working, then we would take it as it came but on the other hand tells me to stick it out as long as I can. What that means to him and what that means to me could mean two different things. Of course there is the option of disability but really, is that an option? I've heard so many people that have been denied (and the very long process that has actually put people in bankruptcy going through it) Even those dying of cancer get denied so while I could hold out hope for disability as an option for me, I can't put all my eggs in that basket.
This has just been on my mind lately, I mean it's not a serious consideration at this point. Today, it came to mind as I took 30 minutes to peel myself out of bed because my body didn't want to work but yesterday I was enjoying a normal (well normal as normal can be for me) day and besides the pills I take, forgot about my illness for a few times in the day - that was nice, wish I had more like that.
I have spoken to my husband and he's nervous. He makes decent money I guess, but we are not exactly debt free. He does say that if my health required me to stop working, then we would take it as it came but on the other hand tells me to stick it out as long as I can. What that means to him and what that means to me could mean two different things. Of course there is the option of disability but really, is that an option? I've heard so many people that have been denied (and the very long process that has actually put people in bankruptcy going through it) Even those dying of cancer get denied so while I could hold out hope for disability as an option for me, I can't put all my eggs in that basket.
This has just been on my mind lately, I mean it's not a serious consideration at this point. Today, it came to mind as I took 30 minutes to peel myself out of bed because my body didn't want to work but yesterday I was enjoying a normal (well normal as normal can be for me) day and besides the pills I take, forgot about my illness for a few times in the day - that was nice, wish I had more like that.
9.23.2011
Postural Orthostatic Tachycardia Syndrome
That's a mouthful, and to be honest I can't spell it without looking it up but it's my newest diagnosis add-on to my lovely collection. Yay me!
This actually brings me back to my lupus diagnosis days, you know how it goes... where you finally know what has been causing you those problems all those times, but wait... I don't want to hear something else is wrong with me, and not another diagnosis... no not another one with no cure.
I found this out last Friday, exactly a week ago today after a lot of testing at the Cardiologist office and I'm still really upset about it. Maybe I've done too much reading but I've read other people's experiences with it and the heartbreaking stories is just too much for me right now. I feel like I just barely got over how devastating Lupus is and now this, which can be a debilitating thing all on its own.
I've picked up the phone a couple of times to call my mom but put it down before I could hit the call button. I hate to tell her anything because she worries about me. It's hard enough talking to her about my Lupus and I do hold back a lot from her.
Am I making a bigger deal about this than I need to be? Am I being a big baby about this?
For those who are unfamiliar with Postural Orthostatic Tachycardia Syndrome (or P.O.T.S.) or would like more info... source: HospitalSoup http://www.hospitalsoup.com/health-conditions/postural-orthostatic-tachycardia-syndrome-by-dr-blair-grubb/ (edited 9/30 for spelling errors only)
This actually brings me back to my lupus diagnosis days, you know how it goes... where you finally know what has been causing you those problems all those times, but wait... I don't want to hear something else is wrong with me, and not another diagnosis... no not another one with no cure.
I found this out last Friday, exactly a week ago today after a lot of testing at the Cardiologist office and I'm still really upset about it. Maybe I've done too much reading but I've read other people's experiences with it and the heartbreaking stories is just too much for me right now. I feel like I just barely got over how devastating Lupus is and now this, which can be a debilitating thing all on its own.
I've picked up the phone a couple of times to call my mom but put it down before I could hit the call button. I hate to tell her anything because she worries about me. It's hard enough talking to her about my Lupus and I do hold back a lot from her.
Am I making a bigger deal about this than I need to be? Am I being a big baby about this?
For those who are unfamiliar with Postural Orthostatic Tachycardia Syndrome (or P.O.T.S.) or would like more info... source: HospitalSoup http://www.hospitalsoup.com/health-conditions/postural-orthostatic-tachycardia-syndrome-by-dr-blair-grubb/ (edited 9/30 for spelling errors only)
Subscribe to:
Posts (Atom)