A Day in the Life

Hi everyone!

It’s Rare Disease Day!  In honor of that, I’m going to share with you a typical (if there is such a thing as typical at this point) day in my shoes.  To be fair, nothing is typical with this disease.  But…we’re going to give it a go.

When I wake up, it’s normally in the afternoon.  Today, I woke up around 11:30 to go to the bathroom, and answer a couple text messages.  I was going to babysit today, but it was pushed back until Thursday.  GREAT!  I can sleep a little more.  So I fall back to sleep, and finally wake up to actually get up around 3:00.  I have slept for around 10 hours (I’ll explain my night soon) yet feel like I haven’t slept at all.  I’m always feeling exhausted.  I don’t remember a day when I wasn’t at least a little tired.  It’s become a normal…one I hate and resent, yet have begun to accept as a part of me.  I come downstairs and go to eat a little something.  Today, I happened to make myself a salad, but I normally jump right into a  protein shake to get me going.  I usually sit down and watch a little TV.  When mom gets home from work, sometimes I shower…sometimes I stay sitting there.  My stairs are steep, and there are days where the 13 stairs we have compare to Mount Everest.  Today was a day where my stairs are extremely daunting.  I’ll sit and not do anything, and yet feel so unbelievably exhausted, it’s almost comical.  I laugh at myself because of how tired I am.  For the last week, I’ve had hives all over my body–but especially on the palms of my hands and the bottom of my feet.  That skin is so sensitive, it hurts along with itching.  It’s a feeling that can’t be satiated and will not go away.  I usually try to ignore the itching, usually only breaking down to take Benadryl when I’m ready to scratch my skin off, or the itch has progressed to my lips.  When it gets to that point, my lips are usually swollen, and my hives are pretty intense.  Recently, they’ve been the size of a silver dollar on my palms and feet.  So I finally give in.  A normal dose of Benadryl doesn’t do anything for my itching…it’s almost a tic tac at this point…no…I have to take at least 125-150 mg of the drug in order to feel for it.  I’ve gotten so used to this dose that it doesn’t normally make me fall asleep anymore–instead I feel so fuzzy and stoned.  I hate this feeling.  I don’t understand why people take drugs if this is the way that they feel.  It doesn’t make sense to me.  Anyways.  If the Benadryl works, I usually just still sit and don’t really do anything for the rest of the day, or until it’s time for the next dose.  If it doesn’t work, then I have to grab my Epi, get mom’s attention, and head into the Emergency Department at a nearby hospital.  There, I get my IV cocktail of more Benadryl, a steroid, and Pepcid, which is another form of antihistamine.  It knocks me on my ass for a few days.  Not only is my body fighting the trigger, but it’s now having to process the medication at the same time.  And it takes a lot of energy at that point.  It’s a pain, but I’m so thankful that I’ve never had any problems at this hospital (another hospital is another story…)

When evening comes, I can always feel it.  For whatever reason, pain and itching are ALWAYS worse at night.  It’s bizarre.  And frustrating.  I could be having one of the best days, and then night comes and I’m in such pain, inflammation, and have such severe itching…I want to just cry (or trade my body in for a new model).  I have to describe this pain for you because it’s so complex.  First, I have joint pain.  It’s some terrible pain.  My joints like to swell (and my shoulder likes to dislocate on a semi-regular basis) and they can get so inflamed, there is no definition to the joint itself.  My ankle and knee like to swell this bad.  The 2nd and 3rd kinds of pain are muscle and nerve pain.  These are just as bad as the joint…but these tend to be more sporadic than the joint pain.  The worst form of pain that I suffer from, is bone pain.  Most people don’t have any idea how debilitating bone pain is.  It’s a DEEP pain…coming from the very middle of the bone.  It THROBS.  That’s the only way to describe this pain.  The middle of the bones feel like they’re growing and shrinking in the span of a few seconds.  It’s the worst pain I’ve ever felt…and there is nothing I can do about the pain.  I’ve tried all sorts of things…ice, heat, baths, salt scrubs, tens unit, tylenol, ibuprofen, and even narcotics…nothing helps.  Because of the pain, it keeps me awake at night.  I can never get comfortable enough to fall asleep–the pain always keeps me awake until I reach that point of exhaustion where I just nod off to sleep, usually around 5am.  It’s never a very restful sleep…as any little throb will wake me up, not to mention the itching.  I’m telling you…this is so frustrating.  I usually don’t know what is causing the itching or the pain…besides the disease…I don’t know what the triggers are.  Figuring them out is insane too.  We eliminate one thing from my diet, or from my environment, and go from there.  So far, we’ve gotten rid of most preservatives, and we’re trying to get rid of colors.  Do you know how many things are artificially colored?  EVERYTHING!!!  We’re also getting rid of artificial sugars…do you know how many foods have artificial sugar?  EVERYTHING!!!  I’m just frustrated and really feel like giving up.  But, I never let myself do that.  I keep going.  I have my semi-colon on my finger, and it’s my reminder that giving up isn’t an option.

There are obviously differences in my life–for instance, tonight, I got a huge surprise when someone who I love very dearly sent me a gift card to American Girl–a store I’m completely obsessed with–to get a Girl who has the same nickname that I do.  I cannot wait to get my hands on Tenney.  ☺  My puppies are a lifeline for me.  They make me smile and laugh when I feel like I’ll never smile again.  Just today, Buzz jumped up on my bed, flopped down on my back, laid his head on my shoulder, and just licked my face.  Then he fell asleep and started to snore on me.  He stayed there for a good half hour, and it was so nice because everytime I’d look at him, I’d get a new kiss on my face.  He makes me so happy.  And Woody…he’s just psycho.  I don’t know what I would do without my babies.

To everyone who is thinking about me, sending me well wishes, or praying for me, I thank you from the bottom of my heart.  You all mean more to me than I can possibly say.  xoxoxo

All my love,


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