Well, I haven't been around in over a month and it's kind of been a mix of reasons. For the most part; I haven't had much of anything new to report and I have been extremely busy and when I'm not busy, I'm resting.
I did want to update that I did visit the new rheumatologist last month and she was very pleasant. Now I realize it was only the first visit but she listened well, agreed with my diagnosis which meant not go through the entire diagnostic process again (it helps when you have ALL of your medical records), and she also agree that the current treatment I was on was not cutting it. So, she started me on CellCept which I am taking 3 pills a day (1500 mg). I am into it now for about a month and I have to say that I am not experiencing any ill side effects. I know it's going to take a while to know if this medication will work for me but I'm holding onto hope.
Anyway, I just wanted to reach out and touch base and let the "world" know I'm ok. Once the holidays are over, I'll be more active... you know how it is. :)
12.16.2011
11.08.2011
When Both Suffer a Chronic Illness
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).
"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).
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)
7.18.2011
Heat Intolerance ... What Steps Can We Make To Get Through It?
It's not news folks... this country is suffering, quite miserably may I add. Down here where I am, the heat is no stranger during this time of year, however we do tend to get a break every now and then with a cool down of scattered showers but we have been in such a drought that it has just become unbearable.
Like many with autoimmune issues, I have autonomic problems so my thermostat tends to be off. Heat can be really bad for me also since I don't sweat that well due to the medications I take. I guess the best I can do is stay indoors and keep as hydrated as possible. It sure takes the wind out of you though and I tire very easily.
Just some tips to remind me of what I need to do to get through this swelter:
1) Don't forget the sunscreen!
2) Always carry water
3) Stay indoors as much as possible (if can't be indoors, find shade)
4) Park your car in the shade
5) Eat cool foods, less cooking in the kitchen means less heat
6) Stay away from soda or other caffeinated beverages which can be dehydrating
7) Wear a hat
8) POPSICLES
Like many with autoimmune issues, I have autonomic problems so my thermostat tends to be off. Heat can be really bad for me also since I don't sweat that well due to the medications I take. I guess the best I can do is stay indoors and keep as hydrated as possible. It sure takes the wind out of you though and I tire very easily.
Just some tips to remind me of what I need to do to get through this swelter:
1) Don't forget the sunscreen!
2) Always carry water
3) Stay indoors as much as possible (if can't be indoors, find shade)
4) Park your car in the shade
5) Eat cool foods, less cooking in the kitchen means less heat
6) Stay away from soda or other caffeinated beverages which can be dehydrating
7) Wear a hat
8) POPSICLES
7.15.2011
Still Have My Foot In the Door
Wow it's been awhile but I just wanted to let you all know that I'm ok and still here. Just have been busy and stretched thin these days. Work work work, house house house (spring cleaning was delayed a couple of months this year). I was feeling kind of good so I just wanted to dive in but still being mindful not to overdo myself while still getting plenty of rest in between. I've been also trying to get light exercise in as much as possible and eating more healthier, cleaner foods which is always better for the health, right? I've even managed to lose about 7 lbs, YAY ME!!! I need to do more journaling for my soul so you'll be hearing more from me soon! Cheers :)
5.17.2011
The Chicken or the Egg? - Genetics and Family History of Illness
I never really knew how important all of that was until I got sick. I mean, if you are sick, you are sick right? Why would you really need to know where it came from or even more so, how dire your future may be.
Hmph… really! why? Just live your life and hope for the best.
But when you get sick, there is a burning desire inside of you to find out where all of this started, well at least for me. What’s funny is when I first started the journey of trying to find all this out, everyone basically (and some still do) throw up great defenses as if to say “well you didn’t get it from our side of the family.” In that way it was presented though it felt as if I was out to blame someone which of course I wasn't.
Even today, I believe I found the link to all the autoimmune issues however my maternal grandmother (whose side my theory belongs to) believes that the family members that are sick - my two cousins (one has Lupus, the other has antiphospholipid syndrome) - got it from their other side of the family that we have no relation to. She bases this on that their Aunt has Lupus as well so yes it just makes it that much more confusing.
Even this grandmother of mine has developed a kidney disease and I asked her what type of disease it was and she told me that she doesn’t want to know. Don't get me wrong, she is taking daily medication for it and seeing a nephrologist regularly but she actually does not want to know the name of the condition and/or disease she has. She always taken good care of herself and never drank or smoked and not diabetic so I have to wonder what is going on. But it’s part of my family illness and I believe that I should know.
Maybe one day I will solve this mystery (or not, since no one wants to discuss it)... or yet, I may in fact be the very first generation of autoimmune in my family but I don’t feel that in my heart.
Catching Up
Just wanted to let you know that I haven't gone away, I just have been trying to catch up with work and stuff at home after a few days out of town visiting family. Just getting my bearings straight or however that saying goes :P ... missed the blog community tremendously!
5.12.2011
More? I'm Good, Thank You
The nausea went away finally and then OUCH!... dang did something bite me? Oh no!, popped blood vessel. Now I have had these in my fingers but never in my palm... let me tell you, they are a bit more painful. Owwy!In case you can't see it, it's that bruisy thing right under my index and middle finger --->
Tummy Troubles Day… blah
It’s not a pretty subject folks but it’s hit me hard today. I’m here at work trying to keep my head up and my stomach down and to get through the day. I hope it’s short lived. Not sure where it came from. I’m not on any hard meds at the moment (just Prednisone, Plaquenil, some other misc stuff that shouldn't affect me that I've been taking a long time anyway, plus I actually cut back the NSAIDs -my own decision- because I was ironically worried about my tummy) but I guess that’s the case with this illness… ‘Stuff’ happens.
Here’s to fighting through it with a smile anyway :)
Here’s to fighting through it with a smile anyway :)
5.10.2011
Wanting to Make a Difference
World Lupus Day
I have my purple on today and my “Someone you know has Lupus” bracelet (last year’s model) -I really need to get the new one-. I have my Facebook profile picture set to the World Lupus Day picture. That’s really as much as I can do. I really wish that I didn’t have to keep my illness hidden. It’s a shame that the fear of my work finding out makes me feel like I’m living a lie about myself. I want to do more to spread awareness and I feel like I fail all of us Lupus sufferers because I have to be so quiet… that I’m a hypocrite to be an advocate to support awareness but I can’t do much myself. I think that I will be looking into some volunteer opportunities that I can do which will not put me in the spotlight but will allow me to make a difference.
My Mother’s Day…
Well I’m a tad late but I hope that all the mother’s and children of mother’s and mothers of fur babies and so on had a lovely day on Sunday. Mine was great with the exception with both of my husband’s mother and my mom out of town (we did send them beautiful flower arrangementsJ). We did the usual take Mom (moi’) out for lunch which was really nice. My enjoyment out of it was not so much to honor me but I just love the time spent with my boys. With my son as a teenager, he pretty much likes to do his own thing so it was really nice that we all got out as a family. We had lunch on the patio at this nice little Mexican restaurant. Afterwards, went home and put my feet up for the rest of the day. Ahhh… and you just know I had to squeeze a nap in there.
My husband actually managed to do a few loads of laundry and some dishes… score!
5.05.2011
Lupus Books – My Essential List
The internet is a big source of information, search engines can basically get you anything you are looking for nowadays. Just type it in and ‘voila’! I love the internet, I love research BUT I’m very skeptical in certain areas, especially when it comes to my health. Sources on the internet can be misleading, unless from a reputable source, so I find its still in the best interest to carry some actual paper references (no, they aren’t considered stone age material yet). But I just wanted to share a few of my favorite Lupus (and other) books. Some or most of those reading this may be very familiar with these selections however if this could help a wandering newly diagnosed that happens to stop by, I’d like to share my suggestions:
(Please feel free to enter any others in the comments! J )
1) The Lupus Book – Daniel J. Wallace M.D.
This is pretty much THE book that everyone with Lupus has and for good reason. It’s written by a very knowledgeable rheumatologist and gives you all the facts about the disease. Nothing too technical but no fluff either. To this day, even years after my diagnosis, I still refer to the pages in this book and I always know where it is.
2) Lupus Q&A: Everything You Need To Know – R. Lahita, R. Phillips
I like this book because it’s in a Q&A format and the questions are, in my opinion, the same questions that you would have when you are faced with your new diagnosis. It pretty much covers everything that would come up in your head that you would want to know or a close friend or family member would want to know. It gives thorough yet short, concise answers that even a lupie brain wouldn’t have trouble with.
3) Living Well With Autoimmune Disease – Mary J. Shomon
This book gives good bits of info on a range of different autoimmune diseases as well as referencing sources for more info. Because lupus (and other autoimmune diseases) usually don’t like to travel solo, it’s good to have a reference book just in case your doctor pops another diagnosis surprise on you.
4) The New Sjogren’s Syndrome Handbook – Daniel J. Wallace M.D.
This is basically the same as the Lupus book but as you guessed it is about Sjogren’s. I added this in because I have Sjogren’s as well and the material out there is very, shall we say, sparse. Since many of the symptoms of Lupus and Sjogren’s can overlap, it does help tremendously to have ‘twin’ books written by the same author to cross reference and differentiate my symptoms between the two diseases.
5.03.2011
Chronic Illness and Communication in My Marriage
I hear differing views on this subject on whether you should open up to your loved ones on how you are feeling or just keep it in. I really don’t complain about my pain and fatigue however sometimes it’s pretty obvious when I’m taking the opportunity to steal some time for some much needed sleep when I can or when I clean a room in the house and pretty much am done for the day (or at least the next few hours).
Many people say it’s important to share with your spouse or partner exactly how you are feeling physically when you are chronically ill but I always worry that would get old and not mean much. I personally also battle with the fear that my husband will see me as an eventual invalid that he will have to take care of someday (irrational fear – I’d say so but I deal with past abandonment issues growing up that I may save for another blog entry another time).
We have been together since high school, the healthiest days of our lives. THAT HEALTHY PERSON is the person he chose from the beginning (yes, that kind of crap goes through my head all the time – especially at my weakest and lowest self esteem moments)
We have been together since high school, the healthiest days of our lives. THAT HEALTHY PERSON is the person he chose from the beginning (yes, that kind of crap goes through my head all the time – especially at my weakest and lowest self esteem moments)
So needless to say, I keep a lot of verbal complaints to myself.
I’m not sure if it’s the best thing because when I do get pain; my husband looks at me like it’s coming out of nowhere. He then ‘empathizes’ with me and tells me that he feels the same sometimes. (The tone seems to have a sarcastic hidden meaning behind it, as if to say ‘everyone gets pain’) That it’s probably better to push through it. I think it’s the athletic mentality in him to give this advice but probably not the best advice in my case. Regrettably, I do push through… then PAY for it later.
So I pretty much just keep my mouth quiet, it’s the non verbal words that are the hardest.
5.02.2011
My Experience of My First Lupus Walk
My alarm went off on the Sunday morning and I felt an excitement that I was going to accomplishment something today, not just for myself but for something so much more. Little did I know how much and what that impact would mean to me.
My husband and I got to the meet up place where all the walkers and runners were and I was amazed of all the people that were there. The place was so well organized and was so well decorated and festive. Lots of vendors and businesses that had donated their time and resources.
As I looked around, I saw people wearing t-shirts custom made for their teams mostly in dedication to the individuals they were walking for. I felt the devotion and the love to these people and my heart was so touched. The people were happy to be there to sacrifice this day for their loved ones who were sick. I saw stickers on backs of the walkers that said "I'm walking for..." with names and named relatives and friends and as simple things as 'me', 'my beautiful mom', 'my best friend', 'my aunt', even 'my neighbor'. I quickly stood in line and grabbed a couple of stickers and wrote one for myself and one for my husband ('for my wife'). We put on our stickers and started our walk.
As we started on our 5K journey (a tad over 3 miles), I looked to the left of me and noticed a woman with a cane. I looked a little further down and noticed another with a cane and also had a scarf around her hair as it was apparant that she was probably going through chemo with hair loss. I was instantly motivated in that these women were pushing to walk and fight for this cause no matter the pain. I was so touched in a way that I cannot describe and I was determined that this was a fight that we have to keeping fighting. As we kept walking, we saw a few walkers together with stickers on their backs with "In Memory Of". I immediately stole a glimsp of my husband because I just knew. I knew that reality just hit him of what this disease can really do to a person. I didn't say a word. I did see a tear. He did tell me of the impact of that much later.
Our walk was nice, sometimes it was fun watching the others laugh and play and watch the kids run around. Other times, it felt like it was just my husband and I as we strolled together and enjoyed the scenery. This walk has done so much for us.
I didn't actually feel the impact of 3 miles until after the 2ish mile mark and I could feel my ankles start to burn and sting. It wasn't too bad though and I knew that I could push through it, I told myself "Today I will push through it!" And I did and I didn't end up too bad.
After the walk, everyone was all smiles... you could see the accomplishment on their faces, not for the 3 miles that they just did but for the cause that they just made an impact on! This was my first walk, it will not be my last.
My husband and I got to the meet up place where all the walkers and runners were and I was amazed of all the people that were there. The place was so well organized and was so well decorated and festive. Lots of vendors and businesses that had donated their time and resources.
As I looked around, I saw people wearing t-shirts custom made for their teams mostly in dedication to the individuals they were walking for. I felt the devotion and the love to these people and my heart was so touched. The people were happy to be there to sacrifice this day for their loved ones who were sick. I saw stickers on backs of the walkers that said "I'm walking for..." with names and named relatives and friends and as simple things as 'me', 'my beautiful mom', 'my best friend', 'my aunt', even 'my neighbor'. I quickly stood in line and grabbed a couple of stickers and wrote one for myself and one for my husband ('for my wife'). We put on our stickers and started our walk.
As we started on our 5K journey (a tad over 3 miles), I looked to the left of me and noticed a woman with a cane. I looked a little further down and noticed another with a cane and also had a scarf around her hair as it was apparant that she was probably going through chemo with hair loss. I was instantly motivated in that these women were pushing to walk and fight for this cause no matter the pain. I was so touched in a way that I cannot describe and I was determined that this was a fight that we have to keeping fighting. As we kept walking, we saw a few walkers together with stickers on their backs with "In Memory Of". I immediately stole a glimsp of my husband because I just knew. I knew that reality just hit him of what this disease can really do to a person. I didn't say a word. I did see a tear. He did tell me of the impact of that much later.
Our walk was nice, sometimes it was fun watching the others laugh and play and watch the kids run around. Other times, it felt like it was just my husband and I as we strolled together and enjoyed the scenery. This walk has done so much for us.
I didn't actually feel the impact of 3 miles until after the 2ish mile mark and I could feel my ankles start to burn and sting. It wasn't too bad though and I knew that I could push through it, I told myself "Today I will push through it!" And I did and I didn't end up too bad.
After the walk, everyone was all smiles... you could see the accomplishment on their faces, not for the 3 miles that they just did but for the cause that they just made an impact on! This was my first walk, it will not be my last.
4.29.2011
Ready to Walk!
4.25.2011
I Surrender... For My Bathrooms, I Surrender
Something happened the other day. Yes, something strange. My husband had an announcement… he had asked another woman into my house…. to come and clean next weekend. This is something that I had been secretly waiting on for so long, and finally the time had come. Please someone pinch me. Can this be true?
And then…
My usual self took over and I was overcome by a wave of sadness. Has it come to this? Have I become so useless that I can’t even take care of my household like a normal wife and mother? What will people think? What will my parents and in-laws think? What does MY husband think?
Evidently he just hired her to do the parts that are difficult for me such as deep cleaning the bathrooms and kitchen since it’s a lot of bending and reaching but it still kind of feels like a blow. Funny thing is that I always dreamed of someone coming to clean my house but now it just feels so wrong. Maybe because when I wanted it, it was for more of a luxury than a necessity.
I had to laugh at my husband when I asked him why he doesn't clean it, he just looked at me and said “ewww” LOL!
4.22.2011
Work and Uncertain Times
I work, I love to keep busy and I knew once I started my 'career' that I pretty much would be working until retirement. That was my thinking in my healthy days. Even now, I push myself to get up every morning and despite my illness, I pretty much drag myself into work almost every day. Yes, some days are excruciating and without the meds would not be possible. I have a pretty impeccable attendance record and I save my off time for my regular doctor appointments. (My work does not know about my illness, which is why my blog is pretty much anonymous, so I use vacation days for my appointments)
Rumor around the water cooler is that layoffs are coming in our site. Now I know about rumors and how they should all be taken with a grain of salt however many departments have already been shut down in our site already so this is not far fetched. Many, many other signs point to this happening so I see it as a matter of 'when' rather than 'if'. I have come to like my job, not because its the best job in the world and everyone is seeking this position but because for ME it is perfect.
1) It is a desk job (not physical)
2) It requires very little thinking (great for brain foggy days)
3) My bosses are not on site with me (I have snuck out for a quick nap here and there in my car *don't judge me - I usually make the time up somewhere else, I've stayed late on many occasions and I'm salary so I don't get OT)
4) I get decent pay without a degree requirement
So given this, if I have to look for a job (especially in this economy) I feel that it will be really disastrous. I have no degree and I cannot do much physical work unless its on a good day. I can't be the go-getter I used to be because I have to consider what I can do in my next job because of my health. SSDI is not an option for me even if they were to approve me (which I doubt since my doctor believes I'm 'always doing so good' - ugh- as my husband has mountains of student loans we are still paying (can you say two mortgages?) and SSDI would not pay enough plus I would like to keep working until I would physically have to quit for my health.
Stress and chronic illness is a recipe for disaster, yet I'm facing a massive burden I feel soon approaching. I know these problems may seem insignificant to a lot of things others are going through but for me these are the stresses that I am facing at the moment. Our house keeps going down in value like every one else so I believe there is no equity in our home either.
This was very hard to type but it was more for me just to get it out there and let it out. Sort of a stress reliever. There are options and possibilities for every situation... there always is... and there will be this time, whatever happens.
Rumor around the water cooler is that layoffs are coming in our site. Now I know about rumors and how they should all be taken with a grain of salt however many departments have already been shut down in our site already so this is not far fetched. Many, many other signs point to this happening so I see it as a matter of 'when' rather than 'if'. I have come to like my job, not because its the best job in the world and everyone is seeking this position but because for ME it is perfect.
1) It is a desk job (not physical)
2) It requires very little thinking (great for brain foggy days)
3) My bosses are not on site with me (I have snuck out for a quick nap here and there in my car *don't judge me - I usually make the time up somewhere else, I've stayed late on many occasions and I'm salary so I don't get OT)
4) I get decent pay without a degree requirement
So given this, if I have to look for a job (especially in this economy) I feel that it will be really disastrous. I have no degree and I cannot do much physical work unless its on a good day. I can't be the go-getter I used to be because I have to consider what I can do in my next job because of my health. SSDI is not an option for me even if they were to approve me (which I doubt since my doctor believes I'm 'always doing so good' - ugh- as my husband has mountains of student loans we are still paying (can you say two mortgages?) and SSDI would not pay enough plus I would like to keep working until I would physically have to quit for my health.
Stress and chronic illness is a recipe for disaster, yet I'm facing a massive burden I feel soon approaching. I know these problems may seem insignificant to a lot of things others are going through but for me these are the stresses that I am facing at the moment. Our house keeps going down in value like every one else so I believe there is no equity in our home either.
This was very hard to type but it was more for me just to get it out there and let it out. Sort of a stress reliever. There are options and possibilities for every situation... there always is... and there will be this time, whatever happens.
4.20.2011
Kicking Myself Into Gear
One of the most horrible issues that plague someone with a chronic diasabling (at times) illness is the weight issues. Yes, some will say its a vanity issue and I'm not going to lie. Vanity is such a dirty word though and I prefer to use self esteem because at least for me, that is more where it hits.
When you get hit with a flare and you have no appetite for days on end or you can't keep anything inside your body, you quickly begin to lose weight and can become very thin. Ironically, people begin to come up to you and compliment you on how 'healthy' you look. I had this 'healthy' look for a couple of years now but as I have become inactive due to the weakness and the stress from work, I have just succommed to shoving easy food (which in lay terms means unhealthy food) in my mouth. Not to mention the evil Prednisone that hasn't helped the situation. I have easily gained 10 lbs in about 6 months which for a 5'2" frame is pretty noticable and I can feel it in my clothes.
I know that I must kick myself into gear and work this weight off. I'm no means overweight but I feel that if things keep going in this direction, it could get out of hand quick. I know that for me versus a healthy person, that means that I have to take it slow but slow is better than no go. (Of course, my husband has other ideas on how to work the weight off *eyeroll* :P)
I even signed up to do the local Lupus walk here in town in a few weeks, now I have no excuses... must.prepare.now.
4.18.2011
It's Hard Living on Lonely Street
So we moved from out of state to where we are coming on 12 years now. I was very excited to move here and start fresh but I knew that I would miss a lot of people that I left behind, mostly the friends I grew up with as my family had all moved away long before I did. Today, I have many of them on Facebook and we keep in touch, it's so nice to communicate in some form with them.
As soon as we moved, I had to start work right away as I was pretty much the bread winner since we moved here for my husband to go to graduate school. Between work and raising a small child, my son was 5 at the time, I never really had the chance to get out and socialize or form any bonds or start any friendships. I did meet a couple of people but either felt awkward since they had many bonds already and I felt out of place due to my shy nature or they moved away themselves.
Now that my son is older and I finally have to chance to get out and have a nice time with a friend or two, now I have another fear. Since then I became chronically sick, AND my sickness is my fear. The fear that I will let people down or come across as the sick girl (I don't like to show weakness). I have heard of people losing friends over getting ill. Who wants to be friends with the sick girl? The one who can't even make plans? Maybe had I grown up here and known people here for a long time, it would be different. I wouldn't have to worry about being judged. But the fear of letting 'strangers' into that part of my world scares me so... so I crawl back into my shell of my home, another day without any friends, it's very lonely here.
As soon as we moved, I had to start work right away as I was pretty much the bread winner since we moved here for my husband to go to graduate school. Between work and raising a small child, my son was 5 at the time, I never really had the chance to get out and socialize or form any bonds or start any friendships. I did meet a couple of people but either felt awkward since they had many bonds already and I felt out of place due to my shy nature or they moved away themselves.
Now that my son is older and I finally have to chance to get out and have a nice time with a friend or two, now I have another fear. Since then I became chronically sick, AND my sickness is my fear. The fear that I will let people down or come across as the sick girl (I don't like to show weakness). I have heard of people losing friends over getting ill. Who wants to be friends with the sick girl? The one who can't even make plans? Maybe had I grown up here and known people here for a long time, it would be different. I wouldn't have to worry about being judged. But the fear of letting 'strangers' into that part of my world scares me so... so I crawl back into my shell of my home, another day without any friends, it's very lonely here.
4.15.2011
First Posting
Well I would be lying if I said this was my first attempt at a blog. Yes, I tried this before and I abandoned the idea. Not quite sure why, I guess I just didn't think my life was interesting enough but now I realize that I need to start writing for me and to heck what others care. I really DO care but I won't let it stop me. Truth is this is not a blog to advertise or sell or do any of that stuff... this will be a boring 'ol blog about the daily stuff of my life and the random crazy things that happen in it. Yes, not much happens to me on a day to day but as the title says my memory is pretty much shot to blah as I live in a brain fog much of the time and I forget what happens. I do like to remember the crazy odd randomness things so I figured I'd chime in here when those things happen. I'm not an ecentric or overly funny person but I do have my moments.
As you see in the 'About Me' section, I'm just a regular wife and mom that deals with a few sucky diseases. I try and get past them on a day to day and make the most of my life. I try not to dwell too much on the negative but sometimes I will steer in that direction. If that happens, please slap the s*&$ out of me because I hate when I get into the self pity mode... but be kind because we all deserve it once in a while. I might write about my illness here and there also, hope it doesn't offend.
As you see in the 'About Me' section, I'm just a regular wife and mom that deals with a few sucky diseases. I try and get past them on a day to day and make the most of my life. I try not to dwell too much on the negative but sometimes I will steer in that direction. If that happens, please slap the s*&$ out of me because I hate when I get into the self pity mode... but be kind because we all deserve it once in a while. I might write about my illness here and there also, hope it doesn't offend.
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