An IV gone wrong :)

For about a week, I was really down on myself.  I could not believe I had let myself go SO much that my weight was now causing me to need new sports bras and new bras.  I did not feel like my current ones were too small, but my rib cage has been aching and I figured that was the root.

I even went on Thurs to Lululemon (oh, how I love that store) to try new ones on.  I was convinced I needed a new size in tops, as well.  Only when I got there, I didn’t.  Odd.  Maybe EVERYTHING I owned got old all at once and was shrunk or I had dried everything? 

Then progressively, the pain got worse.  And started really radiating all around my chest.  We had company in town and I did not want to make a big deal about it and embarrass myself.  So I put up with it and hoped it would go away. And moaned to Luck 🙂   Everything we read about chest pain says NOT to ignore it, even though it is common for Lupus and at my age, prob not dangerous.

My doc said to come in today, but her office flooded from the rain!  And you can’t PAY me to go back to Dr. Kempf.  So I had to go to an Urgent Care Clinic.  I HIGHLY recommend this one:http://www.impacturgentcare.com/contactus.htm. The doctor was so thorough and helpful.  Did an EKG, just to rule out heart stuff.  And a chest x-ray.  And blood tests.  Listened to my chest.  Gave me steroids.  Told me I have pleurisy.  Sent me on my way.  He thinks it is b/c I am off of steroids.  It is a mild case, obviously.  From what I hear, it can be extremely painful.  Not that this feels good, by any stretch.  It is just a burning, nagging pain deep in both sides of my chest. It kept me awake last night.  Until I got up and took another 1/2 of my Ambien.  Thank you, Lord, for meds that help me sleep.

I got steroids via an IV, while there.  And a new prescription for an NSAID.  Here is the only problem:  The only way to treat it is with NSAIDS.  But I can’t take them.  Last time I did I got a bleeding ulcer.  They rip my stomach apart.  He said that if this particular one this hurt my stomach, I was just sort of between a rock and hard place.  It is the “best” for people with stomach issues.  I am actually too scared to even try it and may just deal with the pain until the prednisone takes over.

FUNNY STORY:  the nurse was not well practiced at putting in an IV line.  When she stuck it in, she forgot to close the valve and my blood went spewing everywhere!  Good thing I am not squeemish.  She blamed it on my “strong” veins…but I knew 😉  She must not realize I do this often!

My family is downstairs reading the Magician’s Nephew.  I am going to go curl up on the couch and join them.  I am so blessed by them!

(WHAT EVER HAPPENED TO ME TRYING TO DO THIS NATURALLY??  I just read  my post and it is one med after another.  Oh dear…somehow, someday, I will get off all of this crap.)

Sugar!

Sugar!

I think this article is just a great read if you are interested in sugar and which to reach for when baking or making your oatmeal tastier 🙂

Don’t forget that in order to read the article, you have to click on the purple “Sugar!” button.

My ramblings….

I took two naps today, before 2pm.  I am preeeetty impressed with my abilities to sleep!  And the kids’ sweet spirits to LET me!  Though Reid DID talk his way through my first…

If you read my FB, you will know what he said to me during that nap.  He came up and whispered, “Mom, do you now what my favorite clothes are?  Naked.  And boxers and undershirts.”  Oh, future wife:  I am doing my best!!!  I promise!

I don’t post much about homeschool, but today, despite extreme fatigue, we had a great day.  Shhh, don’t tell anyone, but I am really liking teaching the kids!  And the balance of this school with homeschool is perfect.  True homeschoolers (the ones who would say homeschool is the ONLY way, not my friends who just know it is right for THEIR family)  see this school as a half breed.  But for me, it is great.  I get to help teach things I had forgotten all about.  Such as prepositions and objects of prepositions.  And I get to see the light of understanding come on!  And we made a coup stick today!  I would not make the kids do projects if I was a homeschooler. I am just waaaay too lazy.  But this forces us to do those extra things.

And YET…I get two days off every week!  Oh, glorious days off.  How I love having time to myself.  Nobody to worry about.  If I want to go home and lay on the couch and watch E!, I can!  If I want to go in a store and try on clothes, I can.

So while our little school is sort of a misfit of sorts….regular schoolers still clump us with the homeschoolers and homeschoolers see us as schoolers…it is great for our family.  Our long term plan is to go into the public school system.  But for now, we would not want to do it any other way.  We have done private, are doing home/private, and will do public.  I have no judgments about what YOU choose!  I hear a lot of venom spewed toward other peoples’ choices and that makes me sad.  The bottom line is to do what is right for YOUR family.  And keep your comments, if they are rude, to yourself!  We all have a unique path!

75%

Well, I think I am at 75% now.

The good news: 

-I no longer have problems regulating my body temp.  I can take a shower or do dishes and not die of overheating.

-My hands don’t prune the second I get them wet.  Weird one, right?

-My naps are shorter and less frequent

-My face finally stopped breaking out like a 13 year old.

The things YET to improve:

-Fever

-Overwhelming fatigue

-Hair falling out like crazy

-Fuzzy brain (not just a typical fuzz, my friends.  I always had some of this, but NOTHING like now)

-Sun sensitivity (I can’t be in the sun rays for more than a few seconds before I start feeling like crap.  I know, weird, right?)

-Light sensitivity (I can’t sleep at night because the tiny lights from clocks feel like the lights are on.  I have to sleep with my face covered!  When I wear my mask, Luck says, “Goodnight, bat girl!”)

-Daily stomach aches

-Sleeping problems at night…I toss and turn all night long.

I have a feeling that this is my new normal.  For now at least.  AND I WILL TAKE IT!  It feels great to be able to be at this place.  I have moments of feeling horrible (like this weekend) and moments of feeling okay.  The only times I feel GOOD are the periods directly after I teach class.  For those moments, I feel I am normal.  And those little moments give me hope that I am not gone forever!  Endorphins are my friends!!! And THAT is why I keep exercising!

I guess the Lupus meds are starting to do their job.  In one moment, I can be really excited that I made it to 75%!!!  In another, feel very sad that I only feel 75%.  I could be Pollyanna and tell you that I am SO EXCITED.  But as grateful as I am, I still mourn the old me.  And the times of just living life, not constantly thinking about feeling bad.

Once again, I gotta bring it back to here: It is ONLY Lupus.  I am blessed beyond words by friends and family who care for me and love me just as I am.  Forgetful, confused, hat wearing, clumsy, sleepy, and overall a big mess!  But I am a happy big mess!

Hypermobility Syndrome

Interestingly, while at the doc today, the nurse practitioner was examining me to see if I had fibromyalgia symptoms. 

She pointed out that I have hypermobility in my joints.  Oddly enough, a physical therapist told me that last year when I hurt my upper back/ shoulder blade.  At the time, the PT said it goes along with some syndromes and that I need to remember that I have that. 

Well, I forgot.

Until today!  Just a minute ago, I looked it up and who would guess….it correlates with none other than Lupus.

¹ Other conditions exhibiting hypermobile joints are rheumatoid arthritis, osteogenesis imperfecta, systemic lupus erythematosus, poliomyelitis, myotonia congenita, and some neurological conditions.

Maybe I am not just making this all up.

Today, I….

-called the doc to tell him my fevers were back.

-was told to see my primary care doc b/c they could not help me.

-cried on the phone with the nurse explaining that the primary care people send me to specialists b/c they can’t help me and the specialist send me back to them.  This leaves me spending a lot of money and not getting help.

-was squeezed in to be seen by a nice nurse practitioner.

-cried every time I tried to talk to that nice nurse practitioner.  I explained how I have been feeling and what my symptoms are.  She asked if I was depressed, was getting enough sleep, etc…  I told her that I have dealt with depression and no, this is not depression.  I do not sleep well, but I do stay in bed and sleep.  I take Vit D ( I am deficient) and my Plaquenil and everything else they have asked me to.

-had my rheumatologist walk in abruptly and lecture me.  He lectured me on just about everything the nurse talked nicely to me about.  When I asked him if I could get help with the fevers, he responded by telling me he did not believe I was having them because I have not had a temp either of the TWO times I had been in their office.  No mind given to the fact that they come and go ALL DAY LONG. At any given point, I may or may not have them.  They will come for a number of hours, and then go away for a few.  A thermometer does not lie.  I can’t make it go up on it’s own.  And I know what burning eyes, an achy body, and a general feverish feeling is.  IT IS WHAT BROUGHT ME IN TO THE DOCTOR IN THE FIRST PLACE FOR THE LAST THREE YEARS. IF I HAD NOT KEPT PURSUING THOSE FEVERS, I WOULD NOT HAVE FOUND MY AUTOIMMUNE DISEASE.  YOU CAN’T JUST DISMISS THOSE NOW.  Ahem.

-had that same rude man get up and walk out of our conversation.  I was sitting there quietly crying while listening.  He first very sarcastically tells me I need to go to the Mayo Clinic if I want someone to thoroughly find out what is wrong with me.  Then he gets up mid conversation and leaves.  Just like that.  No explanation.  Walks right out.  I had not been rude to him, I was just quietly crying.

(may I pause right here and say: God bless his poor wife.  I can only imagine if this is how he always deals with crying women, what his wife feels like.  One would think that being in rheumatology- a specialty which is heavily populated with women- which deals with many crazy autoimmune diseases that take on many forms and leaves MANY people feeling even much worse than I do- that he would deal with a few tears DAILY.)

-cried the entire time I had 6 viles of blood taken, a urine sample taken, and paid my copay.

-had the nurse practitioner apologize for his behavior and guess that it could be that he does not have an explanation for me and rather than dealing with it well, he took it out on me.  She also explained that while he said that to me sarcastically, he actually really did mean it that he would give me a referral to the Mayo Clinic. 

-have spent the rest of the afternoon convincing myself that I really am just making this all up.  The weight, well I must just be lazy.  The hair loss….who knows.  The fevers, I can’t answer that one.  The fatigue, I am just lazy, once again.  The confusion, must just be that I “think” I have an illness so I am playing tricks on my mind.

-really want to hide in a hole.

-had a friend bring me a meal 🙂  Without even knowing what this day would bring, God took care of me through a special gal, Chrissy Payne.  Chrissy, thank you.  You have taken a really bad day and reminded me that I have not been forgotten. 

-am ready to go to bed and start a new day tomorrow. 

(I promise…my posts will not always be so down.  I just know that I have been told y’all REALLY want to know how I am doing.  So here you go.  Don’t give up on me.  I may have given up on myself for the moment, but I will be back.)

How does our garden grow?

We shall see!

Today we began fulfilling a dream we have always had.  We got to briefly do this while house sitting/renting when we first moved to SA.  But then we moved in to our last house, which didn’t have good sunlight in the back yard.  Now that we are in our new house, we do! 

We figured that it would be a great learning experience for the kids, would supply us with veggies, and would be a much less expensive way to get organic produce.

So we planted: zucchini, onions, leeks, tomatoes, brussel sprouts, poblano peppers, and rosemary.  Later this week I will go buy some pots to plant some cilantro and basil.  We did not pick an ideal time to start this project…kinda missed the window on tomatoes and some others.  But hey, it is a start.  If nothing grows…well at least we have a garden to plant things in in the spring!

And as you can see, we started small.  We plan to just add on as we get better.  Hopefully this year will be spent learning the ins and outs. 

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Flare

So, I think I am in another flare.  I had suspected over the last month that since I was able to go back to a mostly normal life (just a slower pace, and a more confused brain) that I was probably out of the last one.  I still napped every day.  And in general took it easy.  But I was not sleeping all day and having a temp.

But Friday.  Oh Friday.  It came and I never really made it out of bed/off the couch.  Except for, as my previous post talks about, dinner.  Fortunately, the kids are at great ages and were angels.  They actually had a great day with me out of their hair not telling them chores and school stuff to do. So they just played together all day long.

Yesterday, I helped throw a shower and by the time I was driving home, I could feel that old, familiar feeling.  Eyes burning.  Body aching.  NOOOO!!  My fevers are back.  My thermometer confirmed it.  I slept the rest of the afternoon then went on a great date with Luck to a tapas bar.  Still felt crappy, but we enjoyed some Sangria, paella, meats and cheeses, artichokes, random other things, and of course flan and cheesecake.  After that we went to Borders.  I ended up looking at Lupus books.  They always make me feel so much better.  The authors are almost speaking for me.  Blood tests that come up positive and then negative, fatigue that you can’t explain, feeling crappy yet looking normal and not “sick”, frustrated b/c doctors can’t really help you all THAT much, etc…  But they all say the same thing, “Only YOU know YOUR body.  Listen to it and keep pursuing feeling well.  Don’t let any person, doctor, anything slow you down from fighting until you are better.”

Today, I could not make it off the couch.  I have been here ALL day.  Fever all day long.  Fatigue that I just can’t shake.  Stomach ache.  And of course, confusion.  But fortunately, I got to take the whole day and rest.  I am so blessed that I have a husband here who takes the kids when I am sick.  My sweet friend, Jillian, is doing this battle alone.  She helps me keep perspective.  She is a full time teacher and a mom to a precious 5 year old. Jillian, I am so proud of you!!!!

So, how I am gonna school the kids while in a flare…this will be a new experience.  I just hope that I don’t need to get on more prednisone to make it go away.  I am so tired of gaining weight.

And that is my update for now!  Still curious why my sweet friends even read this…but your prayers are so appreciated.  And as always, I like to know what is going on with YOU.  So let me know!

Oh Crhappy Day!

When you live in the Smith house and you have a crappy day, what do you do?  You make this:

It may not look spectacular….but it WAS!!!  Fresh lemon shrimp scampi.  Unbelievably fresh and good.  Gluten free and fabulous!  Thanks to my sweet mom for bringing the shrimp over to brighten my evening.

I have not really gotten up today, except to make dinner.  It has been a hard day, physically.  I suspect it is b/c Luck traveled this week and I did not take the breaks I was used to.  Either way, it was rotten.  And more and more, people don’t seem to understand why I am not calling them back or showing up to things.  Or maybe I just am insecure that they don’t understand?  This week alone I was a no-show at 2 different things.  I cried a bunch today.  But then Luck got home and we made this dinner and had some of my favorite wine in the world: Ballet of Angels, compliments of Sarah Tenney.  So yummy!  So happy!

On to good news:  My allergist (has been seeing me since i was 18) told me that I am no longer allergic to ANY foods.  He has been telling me what I AM allergic to all of this time.  That is right!  He was not sure if it was the meds I have been on for Lupus or if I “outgrew” them or what….but he said my blood is perfect!  He was kinda speechless.

He said I am still intolerant to foods.  Like corn and wheat.  But the huge thing to me is: my cheating and eating them now and then won’t affect my Lupus!!!!  Yeehaw!  We are still gluten and corn free….but not dairy, eggs, etc….  I think that is a gift from God who knew I needed some good news!

I called my Rheumatologist today for help with why I am still gaining weight and why my brain is stuck in a fog.  I felt like he just completely wrote me off.  I think he is still giving it a few years before he decides the Lupus label is correct.  To him, my organs seem fine, so suck it up.  But to me…how am I supposed to be a wife and mom when i feel this crappy all of the time???

I have been told that the autoimmune journey will 3-4 years to figure out.  I guess I thought I was the exception.  I no longer think that.  Many people suffer for many years feeling alone and crazy before a for sure diagnosis is made.  And before they get help.  Symptoms may pop up and go away. While he still considers me a Lupus patient, we wait.

Today, I just wanted to go away.  I am tired today of being tired.  I am tired of people asking me how I am in hopes that I will say,”Great!” when in reality I want to say that I am crappy.  But I don’t want to be one of “those” people….we all know them.  All they do is complain.  So I just want to hide until this ends.

But then my hubby came home and we made dinner together and are enjoying our kids.  I am off to enjoy them now, too.  I needed a break from them, but think I am ready to see everyone again 😉  Even after a crappy day, I still feel like the most blessed person in the world.

Thanks for caring about me, my sweet readers.