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!

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!

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.

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)

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

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 :)

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.