Tough Love?

Okay, I kind of need to rant here. 

I honestly feel like everyone else has doctors that take them seriously and are willing to do anything to help them.  Why does it seem like my doctors are all so very reluctant to ever do tests for me? 

For example, a friend had some stomach cramping for about a week.  She went to the doctor and he gave her a celiac test among other blood tests, an adrenal test(whatever that stim test is called, I can't remember...), and checked her gall bladder.  Turns out, her gall bladder wasn't functioning perfectly, so her doctor took it out quickly and all is hunky dory again. 

Another example is the fact that when my best friend went to go get a sports physical, the doctor felt a murmur.  So he quickly sent her to get an echo and a 30 day holter monitor the next day.  It all came out clear, but she had never complained of a single symptom before.  

Yet another example?  My mother's doctor(who used to be my doctor!) is sending my mom for an endoscopy because she has had some acid reflux for a couple of months. 

And another?  My stepmom's best friend(/brother's girlfriend)'s daughter(I know, confusing, welcome to my life) passes out sometimes when she overexerts herself(the girl hardly eats anything and refuses to drink water...).  Within less than half a year she was given a tilt table test, an echocardiogram, and a 30 day holter monitor. 

Me?  I've had weird things coming out of my body(every time I say this, my GI says "What, a worm named bob?") for multiple years and I have been having digestive issues my whole life.  I just saw a GI for the first time a couple months ago.  He says he doesn't want to do any tests, because he is 99.9% sure that I'm just stressed, seeing as I have far too many symptoms for it to actually be something.  I've also had acid reflux and regurgitation for two years.  He says "It's a phantom stress feeling, I'm not going to bother scoping you for that."  I finally convinced him at my third appointment, after showing him some gruesome pictures, to let me do a stool sample test.(Which may be one of the weirdest things I have had to do for myself...)

Same GI hears a murmur while listening to my heart through a stethoscope.  He had me get a 60 second EKG done, and he said they will decide what to do with it in October. 

Now, before I go further, I must explain that I have been to the Mayo Clinic here in Minnesota.  You would think "Oh, she's gotten plenty of testing there, I don't know why she's complaining."  Actually, I didn't really.  Beyond the tilt table test and the exercise stress test, I didn't have anything done to me that I haven't had many times before.  I had a chest xray, some blood tests, a 2 minute EKG, and a pulmonary function test, that's it.  The rest of my week spent there was all consultations.  But I got an appointment at mayo after being sick for 4 years.  That's 4 years of unexplained dizziness/lightheadedness, extreme exhaustion(I was up to sleeping 20 hours a day and still being sleepy), constant nausea, bad constipation(TMI, but I went two weeks only going once or twice, then a month not going at all, then another two weeks only going every now and again((I was on Miralax and a children's laxative for these last two weeks)) before my system slowly went back to its every four days.), brain fog, palpitations, and more. 

I "probably" have EDS, but I have been told by multiple doctors that it is a "waste of a ton of money" and would "do nothing but cause life insurance problems to get a diagnosis".  Honestly, I still have the symptoms, I'm still going to have life insurance problems anyways. 

I also have this issue where a good portion of the food I eat gives me these little itchy bumps all over my throat and mouth and lips.  Have I ever seen an allergist?  No. 

I have suffered from what I thought were panic attacks my whole life, except I couldn't ever explain why I was having them when I felt no panic before, during, or after these attacks.  I just felt really cruddy.  I now know that these are more than likely adrenaline surges/dumps.  When my parents said "She wakes up every morning at 3 am shaking uncontrollably and vomiting." of course it's just anxiety, without doing a test, without looking into any other possibilities. 

The first time I had (TMI ALERT!) bloody diarrhea, my parents said to wait it out for a few days.  Five days later and I was still having it, so I went to see my doctor and they said "eh, probably something you ate, you'll be fine."  I literally was in there for 5 minutes, just long enough to say the problems I was having.  No tests, no questions were asked. 

I've had a fever and a really sharp pain around my appendix for 3 days now.  What is the answer?  Wait it out and take some ibuprofen.

Now, I didn't exactly mean for this to turn into a post about all my issues(or "problems" as my best friend calls them...) but I really and truly want to know why, if I'm having all these problems, no doctor seems to want to try to help me with even one of them. 

Because I'm "too complex"?  I have "too many symptoms" as my GI has said?  I can see how a doctor might get overwhelmed when thrown all these things at them, but never have I ever gone to a single doctor's visit and complained about all these things at once.  If they ask questions, I answer them truthfully, but I don't come armed and loaded every appointment with a barrage of symptoms.  I usually try to focus on which is my worst at the moment and go with that. 

Probably the real reason is that I have a history of anxiety.  I know I said that I'm pretty sure that my panic attacks weren't real panic attacks, but at the same time as those were happening, I did have a lot of fears.  Like I said, I used to wake up every night at the same time and throw up several times.  I became very, very phobic of vomiting.  So phobic that I ate very little for fear of getting food poisoning(the one time that I actually did get food poisoning, everything got doubly worse.)  Even now,  every time somebody around me gets sick, I do get a little obsessive.  I'm getting a lot better with that though.  I also had control issues where on car trips I would ask to go to the bathroom every half hour and go to the bathroom between every 45 minute class(often making me late for class, and eventually giving me detention.)  I was extremely afraid that I would have to go to the bathroom and I wouldn't be near to a bathroom or allowed to go.  I knew I could hold it, that wasn't the issue, it was more of a control problem.  That anxiety is completely gone, praise the Lord.  Another issue(and I still have this problem today) is that I can't handle complete darkness while trying to sleep.  I don't mean that I'm afraid of it or that I think scary ghosts are going to come eat me, I just mean that I literally cannot sleep without some light on.  My mom used to let me fall asleep with the hall light on then turn it off after she saw that I was asleep.  I would wake up less than a minute later and not be able to fall asleep again until I turn it back on.  I really don't know why this is, just that I better get a roommate someday that is also scared of the dark(or one that can tolerate light).  I'm fine with the dark if I'm just sitting in it, however; I just will not be able to sleep.   

I also had some problems with other general anxiety, but I was going through a tough time of being bullied(I was literally sat down often and not allowed to escape while the girls in my class told me what was wrong with me and that I needed to change.)  We weren't allowed to play with the other grades at that time, and our classes were only around 20-25 people, so I was kind of stuck. 

When I stopped eating for the vomit phobia I lost a lot of weight, and I began to have lots of tests done on me.(mostly just being poked and prodded) For a long while my Cystic Fibrosis tests kept coming back inconclusive.  Finally, they got a negative test and it was decided that it was all anxiety,which I had been telling my parents from the get go. 

So long story short, I've been through a lot of therapy and I've conquered a lot of my problems.  But because I did once have that anxiety, it is held over my head at every available chance.  While at mayo, I saw three different psychologists.  Every doctor's appointment I've ever had I am asked "So how do you think your anxiety is?" My answer is always the same "Virtually nonexistant, thanks." and then, because I am a minor, my parents are asked the same, and of course they say "I think she's really struggling with it right now, it's really bad, I think she needs to go back on medication."  So of course every doctor's appointment I've ever had is also discussed with the possibility of me trying yet another medication only for it to fog up my brain to the point where I can no longer comprehend anything.(Very high dose of prozac+underweight me=bad situation)  I say "But I hardly ever feel stressed, I'm almost never anxious!"  They ALL(parents, doctors, etc...) say "Oh honey, but it's your subconscious that is heavily riddled with stress and anxious thoughts and that is making you this sick!" 

Part two of my rant is all about the anxiety, obviously.  But say I am subconsciously stressed, and I am not aware that I am stressed because I am not consciously feeling stressed.  How am I so sick from something like a little stress?  My stepsister has an even crazier family life than I do, is the same age as me, participates in almost all the activities I participate in, and is as if not more predispitioned to stress and anxiety problems.  She has never had a health problem in her life. 

GI now thinks that I have(Warning, may be triggering for some) an eating disorder that is causing my IBS, which is causing stomach pain.  I told my dad after my last appointment that I was pretty sure that I didn't have an eating disorder.  He said of course not, that nobody that has an eating disorder is aware of it.  But I have had very close friends with eating disorders, and correct me if I'm wrong, but I think they are aware of it to some extent.  I'm not trying to be ignorant, but they are obviously making the conscious decision to not eat to (usually) control their weight because they feel like they can't control anything else.  Maybe I'm wrong, if so, I'm really sorry.  But like I said, I've helped a good number of friends through body issues and (none of them diagnosed) eating disorders, and I just feel like I would have a better understanding of it if I did.  I have a really positive body image.  I love to go out and take pictures with my best friend.  I only ever step on a scale at the doctor's office.  The last time I went on a scale at home was two years ago when I was way underweight and needed to gain weight and make sure that I wasn't dropping anymore, because my doctor was threatening putting me on a feeding tube.  Honestly, when you have the stomach flu, is the first thought on your mind to go eat a large meal?  It's like that every day for me, so it's sometimes really tough for me to force myself to eat a lot.  I haven't felt the feeling of hunger for a long time.  While I love the taste of food(sweets especially!) I just often don't have the stomach for it.   Somehow when doctors ask how I feel about my body or when my GI says that I need to see a psychologist to talk about disordered eating, I feel like the way I feel is my fault.  I know it's not what they're saying, but the way they say those things and the frequency that they say them makes me feel that way sometimes. 

I am trying, I am trying really hard to keep my life as normal as possible, I really wish that a doctor would step up and at least try their best to help me do that as well instead of spending the whole appointment interrogating me about my self esteem and how stressed I am.  I have tried their suggestions, like my GI said to try a relaxation CD.  I did it and it made no difference.  My muscles didn't feel more relaxed because they weren't really tense in the first place.  Really the only thing that makes me stress is stressing about whether I'm stressed or not! 

So, okay, I know that this post is REALLY long and pretty much just me complaining, but this has been bothering me for a while now.  Sorry if anything is TMI, I've grown up having to share whenever I had a bowel movement, so I'm pretty comfortable with everything. 

Peace and extra spoons to all,

Laura
 

These are a few of my weirdest things...

I have been in a lot more weird situations than your average teenager.  Why?  My health, sillies!  Just tonight I had one such example.  It's something that I'm not going to mention, because it is so far beyond TMI that not even my mom wanted to know. 

SO.  I just wanted to write about how people with chronic illnesses don't just lay in bed all day eating soup and going on the computer.  Okay, that is a lot of what happens.  But it's not all.  What everyone fails to realize is all the medications we have to take, the therapies we have to try, the tests we have to get.  Lets just say that I am experienced in giving myself enemas.  That's even probably a bit too much information, but I'm leaving it there. 

Because even before I was diagnosed with a chronic illness and was told that I "more than likely" have several other chronic illnesses I was sick and having test after test after test after test. 

I first got my blood drawn for routine tests at the age of 6.  Of course most kids go through shots and such, but I mean I was having my thyroid checked regularly from the age of 6 and on.  Since then I've been a human pin cushion.  Because of the regularity of me being stuck with needles, I was afraid once, maybe twice, but since then I have developed a sense of apathy towards needles and most other medical devices.  My best friend is terrified of needles and will purposefully either make herself black out or just make her arm go dead and recite bible verses in her head.  I sit down, roll up my sleeve, and show the phlebotomist where my good vein is and where is the best point to put the needle in.  Does your average 16 year old know all this?  Probably not.  Of course I don't LIKE needles, but I really don't care.  My last phlebotomist was shocked that I was so cool about having 10 tubes of blood taken and kept asking if I wanted to sit on my dad's lap or anything.  It's like, been there, done that. 

But at the same time, I am an absolute wuss.  I haven't had half the stuff done to me that a lot of spoonies have to have.  I haven't ever had the "invasive" tests done.  I've had several CT scans, EKG's, X-rays, ultrasounds, and exams up and down every hole on my body(Sorry, you probably didn't need to know that...).  But I haven't had to endure things like spinal taps, colonoscopies, or biopsies.  A lot of people have to have a lot of scary tests.  So for all my talk, I really am not a wuss. 

Saying all that, I believe we are ALL strong in our own ways.  Everybody has something that they have to overcome that is difficult for them.  Because that's the thing, God won't give us anything that we can't handle.  That is the amazing thing. 

So I know that this is a nonsensical post, but I just felt I had to say that we spoonies are not as "lazy" as we may come across.  We have been fighting a long and hard fight, and it leaves us exhausted.  So think before you judge somebody with a disability pass in their car who can walk, or somebody getting up out of a wheelchair and walking by themselves, or somebody sitting on the floor of Walmart. 

P.S., for those that don't know what I mean by "spoonies", click here. 

Peace, love, and extra spoons to all,
Laura

Olay Fresh Effects?

I realize the last couple of posts have been about Influenster.  This is because I truly do think that what they do is so awesome!  I'm just doing my part by reviewing the awesome products that I have the joy of receiving.  I will make some normal blog posts for all ye who may or may not care later.

I mentioned that one of the products that I received was Olay Fresh Effect's BB cream.

Here it is, I would post a picture of my face, but it doesn't look like a whole lot.(You also already got a pic of my BB cream face in the last post.)  A new lipstick or an eyeshadow is obvious, but this is sheer stuff and it doesn't really make my skin look any different.  So here's what it does do:  It keeps my face moisturized and helps protect me from sunburn, all while evening my tone.  I don't always need the moisturizing as my face tends to be oily, but it is nice at times.  Such as, I went on a cross-country trip for two weeks, and armed with my BB cream, the sun that normally makes skin so dry and sunburnt couldn't touch the BB cream.  However, let it be said that I wasn't ever outside for long.  But still, I did not get a sunburn after spending a week in the south.


The weird(and best) thing about the BB cream is that it smells fantastic.  The first time I used it I thought it was my hand soap I was smelling, but to my delight, it really was the BB cream!  Awesome! 

Overall I'm not terribly addicted to this.  It's nice, and I use it if I'm going to be in the sun all day for a little extra protection, but it's not a must have for me. 

Visit the Olay Fresh Effect's website here . 

For buying information, go here or here . 

Disclaimer:  I am not an employee of Influenster or Olay or anything like that.  They did send me products to review, and this is what I am doing.

Influenster? Why yes! Sunkissed Voxbox Review

I hardly ever have the motivation to post.  Why?  I don't know.  It's summer and I have a chronic illness.  I'm living life online anyways!

I signed up a few years ago for Influenster, which is this super cool program that sends out VoxBoxes with free products for you to try and then review.  Easy and you get cool stuff!  But, you have to qualify for a voxbox first.  I never did, and I completely forgot about Influenster.  I would log in now and again to get another badge if I was really bored, but never really thought about getting a VoxBox.

Until about May.  I got an Email saying that I had been pre-selected for the Sunkissed Voxbox.  Yipee!  What to do?  I waited.

What finally greeted me at the door was a wonderful little box with the word "Influenster" on it.  I was SO ecstatic.

 So I ripped open the box.  So quickly in fact that I have no pictures of the box or a video of me opening it up.  Oh well.  Ya'll will just have to settle for pictures of the actual items instead!

 My first impression of the Goody Ouchless hair bands?  They are super cute and kind of fun to wear!

But would they stand up to the test of the ultimate side pony?  Ehhhh.  Again, they're cute.  I was going to a funeral, so I used a black one.  Not too terribly special.  I had to re-tie the band, too because it was too small to wrap around three times and two times was too loose.  This helped, but it quickly became loose again, as these are easily stretched out and don't go back to their original shape very quickly.  Would I use them again?  Probably.  These might be nice to go on top of buns when dance season starts again. 

I also got some Olay Fresh Effects BB cream.  I'm still undecided on this one.  It goes on nicely, and smells really good, but other than that I can't say I feel specially inclined toward or against it.  After using it today, my face was a bit greasy, but I have oily skin and I haven't been doing the best job washing it at night lately.  I didn't have any problems with oiliness the past couple days using it.  I also have really sensitive skin.  I mean really sensitive.  The "sensitive skin" cleansers and such make me puff up like a blowfish and I can't have pierced ears anymore because no matter what I used(stainless steel/hypoallergenic earrings, rubbing alcohol, neosporin...) they were ALWAYS infected.  So I am pleased to announce that this BB cream does not bother my skin at all.  Yay! 

Also included was a bottle of SinfulShine's Gel Tech line from Walgreens.  (Only $2.99!) I got the Spitfire color, and I think the color is absolutely adorable!  I ran out and had to have the NYC Ballet collection from OPI as soon as it was available though, if that tells you the kinds of colors I love. 

But about the formula:  Let me get one thing straight.  I am horrible at doing my nails.  I took this picture after I had cleaned up all the paint that was spread around my fingernails and such, but it's still not great.  When I put it on, I used OPI top coat underneath because I'm too cheap to get a base coat, then OPI top coat on top.  So what I'm about to say might be blamed on that.  The polish went on really nicely.  It was really uneven when I put it on, and I was afraid that it was like so many other polishes that I have tried like this, and almost gave up on it.  But then a miracle happened; it filled itself in!  Where there were ridges became a completely smooth cover.  Cool!  So that part was all great.  I had two somewhat thick coats on in the picture, and that seems like just enough.  It might take more if you have more patience and if you did thinner coats.  So what was my problem with it?  It took eons to dry completely, and then it started peeling the very next day.  Now there may be several reasons for that, one of them being the aforementioned OPI top coat as a base.  The other may be that I do a lot of stuff with my hands.  I play piano, I type on a keyboard, and I sewed something.  But I'm really lucky that I didn't make any jewelry, because that would have definitely peeled it off right away.  I also did two thick coats instead of more thinner coats, because I'm lazy and impatient.  Of course, once it started peeling, I just went and peeled the rest off, so I had a pretty manicure that lasted all of 24 hours.  But through all that, I still blame the polish itself for not lasting long enough.  I have the exact same treatment for my other polishes, and they hold up a lot longer than this did.  But it is only $2.99, so I guess you get what you pay for? 

Above all, it was still cute.  If I try harder, maybe I might get it to last longer, we'll see.  I'm always up for trying again, because I really do love the color.  If I can get it to work, I might even buy more!

Last, and the item I was kind of least excited for, was the Dr. Scholl's High heel inserts.  Don't get me wrong, I love Dr. Scholl's, and if I wasn't so cheap, I might buy things from them more.  But here's my number one problem with getting high heel inserts.  As seen in the second photo, and if I told you that these are my highest heels, I just don't do high heels.  My joints are bad, and I'm far too much of a klutz for really high heels.(How I'm able to dance I'll never know.) 

But now for the positive:  These shoes do usually make my feet hurt very quickly.  They're a size too big, but I continue to wear them because they're really good for speech.  Of course wearing them for speech means wearing them for 12+ hours.  So usually by the end of the day my feet are begging me to take them off.  Which I don't care about, my feet and I already aren't on speaking terms from me doing pointe.  BUT, I went to a funeral a few days ago and decided to break these bad boys and the new Dr. Scholl's high heel inserts out.  I only wore them for about 4 hours, and usually my feet would have been cramping up at that point, but I was totally fine.  I got home only to discover that my mom was leaving someplace, and I was totally prepared to go with her and keep these shoes on. 

So for a family picture and an overall review, here's all the items.  Overall, this was definitely a voxbox that fit my lifestyle very well and I was excited to get it.  These products did not disappoint, and while I will continue to use them until they run out/get worn down, I don't think I will be buying any more.  Well, maybe some nail polish if I can get it to last longer than a day. 

Above all else, THANK YOU Influenster for giving me this opportunity!  I hope beyond hopes that I may qualify for a Voxbox in the near future...  Like, the very near future.  ;)