My New Life

January to now almost April.  Last time I posted I said my new endocrinologist wanted to do further testing.  Well....we did it.  It was a stimulation lab test where I went into the infusion clinic and they gave me a medicine in my IV that is supposed to activate your own body's cortisol, to see if it's working.  According to the labs it is.  The endo wanted me to go off the steroids again without doing a taper.  I then had an appointment with the pharmacy team at the U of M (I have these every couple of months) and they couldn't believe a Dr. wouldn't taper off of steroids.  It wasn't long before I got a message from the pharmacist that she immediately called the endo, and I was to do a taper.  I am now off of them, so we will see!  Hopefully I can be off them for good! A couple months ago I also ended up testing positive for Covid 🤦🏻‍♀️.  So, my ENT at the U who deals with my trach wanted to see me after to see how my trach looked....

It's been a while since I posted anything.  But, most of you have followed me on FB so I guess that's good enough I feel.  Although, maybe taking a break from that is good too.  So, I got a new endocrinologist from the U of M since that's where all my surgeries are we felt it would be easiest since they have to stress dose me during surgery and then usually taper me after.  Well she did labs one after I had been on them and my cortisol levels were good so she said, you don't have adrenal insufficiency according to your labs.  You should be able to come off them fine.  And wanted me to go off them, no tapering.  So I followed Drs orders.  I guess I'm not exactly sure how long it took, but I ended up very sick, like usual and in the ER, and we told them we knew what was happening so they drew labs BEFORE giving me steroids in my IV.  Gave me fluids and steroids and I started to wake up.  Symptoms pretty much resolved.  The ER doc (my ...

I think winter is coming faster than I wanted.  Ok, good news is I'm finally getting the weight loss meds I've wanted.  Thank you to all my supporter!!!  I have the best fsmily and friends ever who always pray for me!  I've already noticed so much more energy!   The bad news I'm still getting headaches.  Although this morning it wasn't as bad.  I get really tense in my shoulders and neck, so we cake to the conclusion that it possibly could be from me not moving my head as much as a normal person per say due to a tube in my throat.  But, who knows.  I give up on trying to figure things out with my body.   Then late afternoon today I apparently moved wrong and did something to a muscle in my lower back or punched something.  It's so painful I was almost in tears tonight.  It's so dang frustrating.  It seems like one thing after another.   My trach cap seems to be pooping of more frequently als...

It's been a while and as I'm sitting here waiting to pick Jack up at school, I thought I would post an update.  I'm sure many of you saw on my Facebook posts that I've been having trouble with the steroids again, and being put back on high doses due to adrenal insufficiency I'm gaining weight again 😭😭.  It is literally so dam frustrating.  All I want is to get my trach out and not live with this anymore.  Fortunately, as my boyfriend reminds me, at least it's keeping you alive.  Yes, yes it is.  When I saw Dr. Gray this last time she asked me "why don't you want the trach?". My response?  "Who would want to live with one!". Through the tears that was the only response I could give her.  She then asked me to be part of a research study.  And maybe to talk to other people going through the same thing to offer support.  Of course I will.  Two days later I received a message on MyChart asking to be part of a different research study r...

Well, I thought I'd put it all in one place.  So I don't really remember much of yesterday.  So, here it goes.  I went to work, early.  Feeling fine, although I've been tired lately, more than usual.  I guess that should have beeny first clue.  Along with diarrhea lately.  But the tiredness I just thought it was the heat lately.  When I got to work I remember setting up the barricades for the farmers market, then going back into the office and feeling lightheaded.  So I walked across Main Street to my boss, Stacy's office.  That's all I remember.  From there her mom, called her and told her to come and Stacy said she asked me if I wanted to take me to the ER or if I wanted her to call the ambulance and she said I just stared at her, so she said that was her answer.  I pretty much then went unresponsive.  The ambulance was called and I was taken in.  The next thing I remember was Nikki Huber talking to me telling me I ...

Some people say I am a determined person.  I guess I would have to agree.  I had goals set put for myself and gosh darn it one way or another I'm going to achieve these! One goal I had was to jog/walk a 5k.  ✅ BAM.  Another one was to loose 100 lbs ✅ BAM.   Doing the 5k I would say I walked more than jogged, but I wasn't thr last person to come in, there were some doozy hills (I mean we were in the mountains), and I still jogged more than I thought I would.  The mucus in my trach was probably what was holding me back some.  And it's even worse now that I'm home 😭.  I was seriously so cold out there.  But I can say I did it! I achieved my goal!  Loosing 100 lbs.  Gosh this hasn't been easy at all.  People probably think oh, she had the surgery,  that's why.  Let me tell you, that is a TOOL, just like any other dieting technique.  I've had stalls, I've gained, I've cried, I've dealt with being back on steroid...

Wow, I've decided it's been way too long since I've updated this! Although, I think most of you read my FB posts.  Maybe this is just for me to have for future reference, who knows 🤷‍♀️.  So much has changed.   Of course, more health stuff.  I got sick again the very end of February as most of you know.  Was at the U of M over night.  They put me on antibiotics for pneumonia gave me fluids, started me back on steroids.  Felt good for a couple of days.  Got sick again.  Saw my primary.  Hit me with a stronger antibiotic because now I had a discharge from around my trach, which is unusual for me.  Got more IV fluids, steroids increased.  Felt better for a while.  Then I didn't.  In and out of the Dr.  Both my primary and my trach Dr and the Er getting fluids, increasing steroids, tests done.  I ended up with RSV.  An adult can get RSV, but normally it's just like a cold for them.  Of course, no...