Though Katie has been awesome at keeping up with our Facebook presence with information and awesome graphics, our blog has been a little neglected.

Okay, maybe a lot neglected.

Katie and I both have been through the health wringer, and it’s been kind of hard to write it out. My problems started in the beginning of March, and now that I have new diagnoses, and am hopefully headed in the right direction, it’s a little easier to talk about. If you’ve been reading, you may have seen me say that when you are chronically ill, it’s not if you’re depressed, but how depressed you are at that point in time.  I have been hiding in my dark place inside, and in my couch corner outside, with my blankets, and pets, and babies, and husband, and a few special friends on occasion (and more are always welcome to join me on the couch 😉 ).

IMG_1740

Since March, I’ve been diagnosed with Pericarditis, Costochondritis, Sjorgen’s Syndrome, and Orthostatic Hypertension (borderline POTS, but my heart rate only gets up around 150 at its height, and POTS is more like 200, I guess?).

The Pericarditis and Costochondritis diagnoses were fairly dramatic.  We were driving home from a Remicade infusion, Ben, Emeline, and I, and I started feeling like a giant was sitting on my chest, about half way home.  I was having a difficult time breathing, and was passing out fairly regularly.  We decided to go on to the ER at home instead of turning back to OKC.  The ER was semi-helpful, but mostly my primary care doc, who prescribed an anti-depressant and anti-anxiety drug so I can cope with the crazy pain and feelings of terror associated with basically feeling like I was having a heart attack.

My diagnosis with OH was also pretty dramatic.  Basically, I passed out while my 3 year old was in the car (2 at the time), on my way to pick up my 5 year old from dance. Luckily, I hit my head on the steering wheel, came to, and I was right by the Ezzell woodworking shop.  I was able to pull in and avoid injury to anyone, and Ben collected us all and got us safely home.  I haven’t driven since, and have passed out a whole lot, including one concussion, due to a very well made child sized wooden chair.  My final diagnosis was actually by tilt table test, which was zero fun.  They’re supposed to have you at 70 degrees for 20 minutes, then give you nitroglycerin, then have you stay at 70 degrees for 20 more minutes.  Well, apparently, my blood pressure bottomed out before the nitro, and they asked the supervising cardiologist if they could just stop the test, and he or she said no… So once the nitro dissolved, I passed out HARD.  They gave my mom and I free lunch vouchers, though, so it all shakes out, I guess.

With all of this fun stuff, I’ve gained about 50 lbs, so that’s extra fun.  I’m currently exclusively wearing stretchy pants and dresses, because I ditched most of my too big clothes when I lost weight about 2 years ago.  I’ve fallen in love with LuLaRoe, which I am convinced is created for the chronically ill.  I’ve linked to my local consultant, who is amaaaaaazing, but there are a bazillion out there!

IMG_1651

On top of just trying to accept this all and find ways to cope, I’ve been trying to parent and give my family the life they deserve.  It’s rough, feeling like you’re giving your kids a less-than childhood.  If I knew then what I know now, I don’t know if I would have children, so I am grateful every day that I didn’t know.  I may not be the most effective parent, but they light up my life in ways they’ll never understand.  For instance, I passed out one day with only my 3 year old daughter, Em, at home.  I came to with her face about an inch from mine, saying, “MOMMY!  I’m going to jump over you, but not touch you, okay??  Is that okay??  I’m not going to touch you, just jump over!!!”  Definitely not normal parent/child relations, but she and her sister are my sunshine!

IMG_1859

Knowing what I know now, I don’t know that I would have married the amazing, supportive, ambitious man I did, as I sometimes feel like dead weight.  He had no idea that he was taking on the role of caretaker as well as spouse ten years ago when he married me.  However, the more he supports me and fights to pin down answers and treatments, the more I adore him.  I don’t know how it’s possible to fall more in love with him, but I manage somehow to keep my heart from bursting.  I know he doesn’t see me as a liability, and I try hard to see myself through his eyes, but regardless, I feel like the luckiest woman in the world to have the three of them in my life.

Light of my life

Light of my life

I’m going to fight through the fog, y’all, and keep the words flowing.  Hope you will stay on this journey with Katie and me.