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Feeling good!

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OMG OMG OMG.  First time in a long time – over a month – that I have felt good.  Like really good.  This is the second day in a row.  I have energy and I woke up with no pain.  I did have a splitting headache all night and trouble sleeping, but compared to how I normally feel this is nothing.  I am in such a great mood and so happy to feel like a normal person again.

But with that comes a slight fear.  I feel so good that I want to run around and do things and see people that I haven’t seen in a while.  And then I think to myself that I really need to try to not overdo it.  Because we all know the consequences of overdoing it.   It is easy to set yourself right back to where you started from and have the ugly cycle repeat itself.  I definitely don’t want to go down the evil path of flares because of self-inflicted things.  I have tried to explain this to Mr. and he is pretty patient with me and easy going about not forcing me to do things.  Sometimes I almost feel like lying a little bit about how I feel so that I am not expected to do things that I am feeling fearful about.  That seems rather unfair of me, but I feel like such a killjoy all the time turning down offers to do things and go out that sometimes I feel that the only reasonable excuse is to say that I don’t feel good rather than say I am scared of what the consequences of going out will be on my body.

I still haven’t quite figured out what my limits are.  And what sets off the flares.  And how much activity I can take when I do feel decent.

In the meantime, I will enjoy feeling good and I will try to not overdo it with my excitement.  I will hope that I can wake up every day feeling so good and also remember what it is like to not feel so great.  And I will be thankful.

Debby Downer

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Yep.  That is me and this blog.  I wish that I had inspiration quotes and amazing things to say, but instead I use this as a place to vent.  I figure it is much easier to do it here and might take some of the pressure off of my friends and family to get it out.  I feel horribly all the time with my constant complaints of pain and tiredness.  It brings me down and I’m pretty sure that at this point no one even wants to dare asking, “How are you feeling?” because they might get the full blown truth.

I think it is hard for people to put themselves in the shoes of a person with a chronic illness.  How could you understand?  I try to explain it, but can’t really other than saying that I am tired all the time and I feel like crap mostly.  Oh and I’m allergic to sunlight and cold and my hair falls out and I get rashes and headaches and muscle pain and joint pain and the meds make me weird.  Yay.  People look at me like I’m a freak.  So I will vent here to no one and see if that makes me feel a little better.

Pass the Buck

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If only my team of various doctors were coordinated like this picture…  Just a dream.

But the reality is that none of them speak to each other.  They all seem to pass off whatever issues that I have to another specialist.  And I don’t get any great results.  I do have to say that the Rheumy is pretty responsive, but in this latest bout of symptoms (bladder issues and eye problems) he suggested I see an optometrist and the GP.  Then the GP gave me antibiotics which have done nothing and she sent me to a urologist.  The urologist doesn’t have appointments for the next 2 weeks.  I might actually explode and die before then.

Same thing with the optometrist.  To be fair, it isn’t really his place to change my meds, but I know that it is something to do with the meds.  No one has really seems to be listening to me and tried to change them up to see what is really going on.  Instead I ended up getting a pair of glasses because I was getting bad headaches from not being able to see.  I don’t feel that is the optimal solution, but who do I turn to next?

My plan is to keep pushing on someone to help me figure this out.  Be aggressive with all of them and see what results I can get.  And not let them pass the buck.

Back to tired

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I wonder if these antibiotics are making me feel a little bit flarey again today.  I ended up having to take a nap this afternoon for about an hour even though I went to bed at 10pm last night and slept through to nearly 8am.  The eyes are still blurry.  But at least I’m not having joint pain or muscle pain which is always a welcome thing.  But feeling a bit tired.  Not the crazy fatigue, but definitely tired.  Think that I will try to get another good night of sleep and pray that I’ll feel better tomorrow.  That is about all I can do at this point.  Oh and take Advil.  My glands are feeling a bit swollen.

Sadly, tonight I overcommitted myself by planning a work dinner.  Thankfully it is at 5.30pm so I can still be at home in bed at a reasonable time.  I also have to travel again for work this week for 2 days.  I try to make it as easy as possible, but it does screw with my system even though it is only a flight from San Francisco to Los Angeles which is only an hour.  Sleeping in the hotel rooms are kind of disconcerting, however.  Sigh.  I can’t catch a break.

Bladder Infection?!?

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I know that I was feeling good yesterday, so I guess this is a sign that other things that have been off are not that severe.  In addition to my blurry vision, I have been experiencing something quite odd.  The inability to pee without super super straining.  Like crazy straining.  Where I feel like my brain might pop kind of straining.  I am usually the world’s fastest pee’er.  I run in and out of a bathroom in about 10 seconds flat.   I pride myself on the fact that I am not one of those chicks that sit in the bathroom forever when they have to go.

Until now.

For the past week or so, I’ve been sitting there.  And sitting there.  And sitting there.  And pushing.  And then, finally, a trickle.  And more straining.  Ugh.  It really is quite frustrating.

I drink plenty of water.  I always carry around a water bottle wherever I go, so it isn’t a matter of not flushing out my system.  So, what is it?

After my optometrist appointment yesterday, I headed off to yet another doctor appointment.  The regular old GP.  She asked me for a urine sample.  Yeah, right, I think I mentioned that I can’t pee?!?  I ended up sitting in the office for 2 hours slamming water and reading Eat, Pray, Love while praying for pee.  I finally got the sample out and left with her assurances that she would test it and then call me with the results.  She wanted to either confirm or rule out a bladder infection before sending me onward to a Urologist.

She rang last night and confirmed that it is in fact a bladder infection.  Weird thing is that it feels nothing like any other bladder infection that I have had.  You know, that irritating frequency to pee all the time.  But she gave me a prescription (of course) for a course of sulfa for 3 days.  Here is to hoping that works!


Blurred Vision

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It is funny that in the same day that I post that I am feeling much better, I am also being totally fucking annoyed by the fact that my vision seems to be failing me.  My vision is totally blurry.  Which is a) really weird b) really disconcerting.  It wouldn’t be so worrisome if it wasn’t happening quite rapidly.   In the past few weeks I have gone from perfect 20/10 vision to not really being able to see long distances.  But even stranger is the fact that it doesn’t happen all the time.  In fact, oddly enough, yesterday after I had a glass of cava for brunch, I could see perfectly again.  And a few days prior to that when I drank a few sneaky glasses of vino, I could, once again, see perfectly.  And I have a witness to this weirdness.  I pointed a billboard out to boyfriend and tried to read the numbers.  Couldn’t do it.  But then the next day?  Everything was perfectly clear.  WTF?!?

My suspicion is that it has something to do with the meds.  I have emailed the Rheumy, but he passed the buck on me and pointed me towards an optometrist.  So I made an appointment and went in to see him this morning.  He dilated my pupils and did all the usual 1 or 2, 3 or 4 things.  Unfortunately, this was one of those days that I hadn’t been on some alcohol, so my vision was back to the weird blurriness.  He says that my eyes are perfectly healthy and then looked up the meds that I am on and said that none of them cause blurred vision.  Then he gave me a prescription for glasses.  UGH.  I know that it is not really my vision.  I KNOW that it is something to do with the meds.  You don’t just go partially blind in a few days time, do you?!?

Now I have to figure out what to do next.  It is very frustrating that no one really wants to address the meds issue.  Even if one medication doesn’t necessarily cause blurred vision, couldn’t the combination of all this shit that I take have some unforeseen consequences?  The question is really how to address this.  All the doctors appear to pass the buck or say, “I don’t know”.  I don’t want to damage my eyes by wearing glasses only to find out that I didn’t even really need them.

Grrr.  Back to being frustrated!  Wait till I talk about the other issue that I am having.  That is certainly a good one.  And then funny thing is that I am still having a way more fruitful and healthy feeling day than I have had in a long time.  Trying to hold on to that thought and be thankful that at least I don’t have aches and pains and fatigue!

Welcome to Lupies!

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It seems rather fitting that today is the first day that I am posting and also the first day in a looooong time that I have woken up pain free and with some energy.  I guess the blog is already proving to be beneficial!

I decided to start this blog to document my neverending battle with a disease called Lupus.  For those of you who don’t know what it is, I will keep it short:

Systemic lupus erythematosus (SLE) is an autoimmune disease, which means the body’s immune system mistakenly attacks healthy tissue. This leads to long-term (chronic) inflammation.

I guess you can sum it up by saying that it sucks, as any chronic disease sucks.  Lupus is particularly annoying because you never really know when it will flare up and take you out.  Let’s also be clear that there are varying degrees of the disease.  I am actually thankful for the fact that I am a lucky one and don’t have the organ involvement that other people suffer with.  That is when things get really scary and can lead to death.  Usually when people ask me about the severity of the disease, I respond by saying, “Well, I won’t die from it, but I will live a long and miserable life”.  Yeah, I guess that sounds very negative, but, sadly, it is probably true.

I have found with my recent bouts of dealing with this disease that reading other people’s experiences have been very helpful.  It is good to read about the ups and downs of what people face emotionally with this disease.  There are some stories that make me feel grateful for the fact that I am not as bad as them.  Evil, I know, but things can always be worse!  It is also nice to hear that the fear, sadness and depression is a perfectly natural thing to go through.

I also had hesitations about writing this blog.  It feels almost whiney to ruminate in this disease.  I spend so much time thinking about it that writing about it almost seems morbid.  I don’t want to be the person who is the bummer bringing everyone down with my complaints all the time.  I would like to be a more positive person.  One of those people who embraces life and gets on with it.   Those people who go and do a marathon despite having cancer.  The ones that smile and are happy with life.  Yeah.  I’d like to be that person.  But I think I am probably not.  Don’t get me wrong.  I also hope I am not a bitter person either.  I think I sit squarely in a place called realistic.  I am still struggling to find my place in this world with what I have been given.  My life has had to adjust a lot over the past year and I am still coming to terms with what exactly that means.  I am mourning the loss of my old life still while trying to make adjustments to keep this one going.  It is very difficult and hopefully writing this blog will sort some of it…  Or at least other people can sympathize with the struggles.

But today I am feeling good.  For the first time is a really long time.  Yay for that.  It is like being a gift when you wake up pain free and not exhausted and beaten down before the day begins.  You really learn to appreciate those days and pray that the next day will be just as good.  So, I’m off for now to enjoy feeling good!