I Am Sick & Tired of Being Sick & Tired

I’m over it.  I want to be able to write witty blog posts about the antics of my hilarious children. I want to complain about normal mom problems, like the Halloween Hangover (the struggle is real!) What I don’t want to be doing is writing yet another blog post about my ongoing health problems, and yet here I am.

It is easier for me to have a blog that people can read to keep up with my saga so I don’t have to explain it a thousand times.  I love talking to people, I just don’t love always talking about my crappy health.  And I know that the people who love me (and not to brag or anything, but there are a lot of you) are just worried and want to see how I am doing.  I wish the answer was that I am great, but the truth is a lot more complicated.

Some things are great- my girls are four and a half now, and although they have their moments, in general I am loving this age.  They are cute and funny and still think I am cool, but are old enough to entertain themselves sometimes. My husband is working hours that both of us hate, but there is never a moment I have any doubt that he is my perfect partner in this nutty life.  Our new apartment is great, and we are loving a break from the stress of home ownership (no more lawn maintenance and when something breaks we just call the building to fix it!!)

Mommies In Need is growing beautifully and we just accepted our 17th family, and are about to celebrate our 2 year anniversary, and I am loving my new part-time job at my dad’s company (I get to talk to adults! And go to the bathroom by myself!)

And yet I was hospitalized this week… that’s not so great.

Since I wrote Just Keep Swimming, a lot has happened.  My surgeon went ahead and cauterized all those bleeds, which seemed to be working…that is until I went to get my blood checked and found myself at a hemoglobin of 7 (which is almost to the point of needing a blood transfusion.) So we scheduled another scope (a colonoscopy for a person with no colon) and the surgeon found…nothing.  Everything was healed and my j-pouch (fake colon made out of my small intestines) looked good.

That would be good news except my hematologist (blood doctor, I have a specialist for everything) said that kind of a drop could only be explained by bleeding.  The problem then became figuring out where this mystery bleeding was coming from.

I went to my GI who had this theory about me having disappearing- reappearing ulcers in the scar tissue where they cut apart my small intestines to make my j-pouch.  That made sense to me and I was all set to follow his plan that we watch my blood and go in and cauterize the ulcers whenever they come back and just hope that the tissue will regenerate over time (with a possible trip to a hyperbaric chamber to speed up that process.)

Then on Tuesday I started bleeding ****TMI Warning, if you are offended easily by bodily functions please stop reading now****

Now, a certain small amount of rectal bleeding is normal for me-once again, stop envying my glamorous life.  But this was a whole different thing.  After four or five trips to the bathroom with nothing but large amounts of blood, I texted my internist and asked at what point I needed to go to the ER.  Her answer was, “NOW. Go Now.”

So I did.  Luckily Mike was home and my mom could take me so off we went.  After hours in the ER they decided that they needed to check me into the hospital overnight because if this type of bleeding kept up eventually I would need a transfusion.

Luckily, around 2 am I stopped having as much blood, but the on-call GI still decided to do another scope to see what was going on.  The good news- my pouch looked fine again! No re-occurrence of the ulcers, everything was normal.  He said the only thing he saw was some hemorrhoids.

Seriously?!!  I was hospitalized for HEMORRHOIDS?!!  I asked if it was even possible to loose that much blood from hemorrhoids and he said, “Oh, yeah.  I had a guy almost die because one was attached to a blood vessel.” Not helpful dude.

Now I am planning all my follow up appointments to deal with my hemorrhoids from hell and waiting to see if my surgeon thinks he can fix them.

So if you ask me how I’m doing, these days I will probably just respond, “Hanging In There,” or “Well, I’m Here.” But if I’m really in a mood I might say something like, “Bleeding out of my ass, how about you?”

If I do, please forgive my rudeness, I’m just really fucking tired.

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As Always, Making the Hospital look GOOD!

 

 

 

 

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You Won’t See My Facebook “Year In Review”

Seriously, stop asking Facebook.  No, I do not want to share a montage of my life the past year with the caption “It’s been a great year!”  Because 2014 sucked!

It's been a great year for drugs!  Sadly most of them are anti-diarrhea and anti-nausea...but still!
It’s been a great year for drugs! Sadly most of them are anti-diarrhea and anti-nausea…but still!

It has been nothing resembling a great year, in fact I can genuinely say it has probably been the worst year of my life.  Now before I go on, I want to make it very clear that I have had bright shining moments this year.  I have found love and support everywhere I turned, I have reconnected with old friends and made new ones.  I have had some wonderful times with my family and been hugged a million times and laughed a lot.  For example, today my husband taught Curly to do a dance routine that included “The Sprinkler” and ends with Jazz Hands.  Well, to be fair, she is 2 1/2, that is pretty much the whole routine, but still… awesomeness!

But honestly, the best thing I can say about 2014 is that I survived it.  I survived 3 major surgeries, the removal of my colon, 3 months with an ostomy bag, a skin cancer biopsy, a thyroid cancer diagnosis, the removal of my thyroid gland, panic attacks, depression, anemia, and being told by multiple doctors that my hemorrhoids will probably never go away.  I survived 16 days in the hospital and countless more in recovery.  I survived mountains of pain.  Epic, horrible, screaming pain.  Pain that was so bad that when I finally got the drugs (I heart you Dilaudid) that helped, I may or may not have tried to kiss the male nurse who gave them to me, with my amazing husband standing right next to me.  Umm awkward!

I struggled with seeing my husband take on more than anyone should ever have to by caring for me and our kids.  He stepped up in a major way but I hated having to watch him do it and not being able to help. I survived not seeing my little loves even by Facetime because all the tubes I was connected to scared them.  And after months of being at home with them but being too tired, or sick, or in pain to play with them, I survived learning that I can’t always be Supermom.

That was a hard one for me.  I have never been good at the home-maker part of being a stay at home mom.  So having other people come around and help clean, cook, and do the dishes and laundry was perfect for me.  But I’ve always been good at the “Mom” part.  I love getting on the floor and playing silly games with Flopsy and Curly.  I love teaching them, and listening to them, and reading with them, and wrestling with them, and cuddling with them. And for a good part of this year I couldn’t do those things, and when I did, it was not with my usual enthusiasm.  I survived letting someone else take care of them when I did not feel up to it.  And guess what?  They survived too!

And I came out of this year a changed person.  I really don’t think I could go through all of that and not be a little different at the end.  I am much more anxious about everything, and I don’t really trust my instincts when it comes to my health.  Finding out I had cancer when I had absolutely no symptoms and between two other major surgeries for a completely different issue, kind of made me into a nutcase.  So now I tend to expect the worst, am kind of always waiting for the other shoe to drop, but I’m working on that.

I do like some of the changes in myself though… I have found this blog, a place where I can be truly honest rather than just “sucking it up” or pretending that I am fine when inside I am a giant hot mess.  It has been wonderfully liberating to have pretty much everyone I know (and a lot of strangers) filled in on my struggles so people are kind of caught up to my drama and I don’t have to spend every moment talking to them discussing my health issues, because I Refuse To Be Old!

I also really like that I have become a resource to people who are going through a difficult time.  Over the past year I have had friends come to me to talk about surgerymiscarriage, anxiety, depression, cancer, and lots of other issues because of how open I have been about my difficulties.  I don’t want anyone else to ever suffer through the things I have had to deal with, but if they have to, I am at least grateful that I can be there for them.  I can be a listening ear that lets them cry or a voice to tell them “that just sucks,” and allow them to feel their negative feelings, because pretending those don’t exist doesn’t make them go away… believe me I tried.

And I love that I have become more compassionate, because I understand that things can get really, really bad.  And that I want to make it easier on people going through a difficult time in any way I can.  So I started a non-profit, Mommies In Need, that helps sick moms have temporary in-home childcare so they can focus on recovery rather than constantly worrying about who is taking care of their children.  I may have done it with no plan in place and in a very fly-by-the-seat-of-my-pants manner, but hey, we got 501(c)(3) status in just 2 months, so I must have done something right!

So I guess that 2014 hasn’t been all bad, just… complicated.  There is no way that a Facebook algorithm is going to be able to sum up my year, so I did it here instead.

Friends, family, and virtual friends, I wish you a very Happy New Year and a wonderful 2015.  To 2014 I say, “Don’t let the door hit you in the ass on the way out!”

** If you want to help other mommies out there who are sick and need help with childcare in 2015 and beyond, please consider donating to Mommies In Need here or share that link wherever you can.  We accept Paypal and all major credit cards (or you can mail a check) and you can get a last minute 2014 tax deduction!  If you ever wanted to do something for me when I was sick and didn’t know what to do, you can help now.  I am really passionate about this cause, and starting Mommies In Need has been a huge source of healing for me.  It helps me understand that maybe all the crap I went through in 2014 can lead me to something positive in 2015 and beyond!

Hanging in The Hospital

I’m sitting in the hospital right now, but for once it’s not for me.  My grandmother, Gaga, is having some health issues and I am here with her.  We are waiting to see if a blockage passes, so I am hoping and praying that she does not need to have surgery, especially since I know just how difficult intestinal surgery can be.

But right now, I’m just sitting here.  She is sleeping and I am hanging out in her room so that there is someone here for her if she needs anything and to help communicate with the doctors when they come in.  I’m also giving my mom a break so she can shower and rest since she was up all night getting Gaga admitted.

And it’s weird, cause I have spent a LOT of time in this hospital, but most of it was in that motorized bed, not next to it.  So the beeps and whirs of the machines, the constant hum of chatter in the hallway, and the ticking of the clock (because for some ridiculous reason apparently the only clocks they can put in hospitals are stupidly loud,) are familiar to me.

Right now a lot of people close to me are going through health issues similar to ones I have dealt with and it’s strange to be seeing it from the other side.  It is also difficult, because even though I am so incredibly grateful that I am (hopefully) past the worst of my health struggles, the memory of that pain is still quite fresh.  So when I see Gaga with an NG tube sucking bile out of her stomach, I cringe for her, cause I hated that thing- like more than I hate Caillou. Which is a lot.

For anyone who has not had the pleasure of being acquainted with an NG tube, it is a long tube that goes through your nose, down the back of your throat and into your stomach and then it sucks up everything in your stomach and spits it into a container and every once in a while a nurse comes by and dumps out your sludge bucket.  It doesn’t hurt, but it is super annoying, irritating, and generally unpleasant and gross.  Wanna hear one of the most disgusting things ever to happen to me? If not stop reading now…. still here?  Ok, when they yanked the NG tube out, I got nauseous and started puking, as a tube was coming out of my nose and throat, it was unbelievably miserable.  And this was when I was in the hospital for having my colon removed, so my whole abdomen was sliced up.  I have experienced a lot of different types of pain over the past few years, but I can say without a doubt that intensely vomiting after abdominal surgery (which I did after each of the 4 I had) is the worst!

And that brings me to Annie, Annie who inspired me to start Mommies In Need.  She and I spoke the other day and on the bright side, the Mommies In Need nanny we have paired her with is working out beautifully and the whole family is really happy and relieved to have that very necessary help.  But ya’ll (sorry my Texas roots are showing) she is in the worst of it right now.  The nausea, the pain, feeling like everything hurts and you think something must be terribly wrong and then having a Dr say that what you are going through is just a normal part of the healing process.  And you are like, “NORMAL?!!  So having pain so bad you think an alien is about to burst out of your stomach and start tap dancing on the table and then rushing to the ER and needing a morphine drip only to find out it was gas pain is normal?”  Well that sucks.

Unfortunately, going through this stuff just sucks.  And I feel terrible for my friends and family who are suffering right now because I truly know how they feel and I hate that they have to go through it.  But all I can do is sit here and watch Gaga sleep and hold her hand when she needs it.  Or give Annie some words of encouragement and a safe place to express frustration with the healing process and keep working to grow Mommies In Need so that she doesn’t have to worry about her kids during treatment.  And I am happy to do those things because I know just how much it means to have someone by your side in a dreary hospital room, and how much of a blessing it is to have a friend willing to listen, and how vitally important having a nanny was to my recovery and my sanity.  So thank you to all the people that were there for me when I needed it, and thank you God for allowing me to be strong and healthy enough to be here for the ones I love.

Hey, at least when my friends and family get sick they have a hospital/surgery/general health issues pro on hand.  I’m like a one-woman Wikipedia of illness-related crap! With one call I can tell you what to bring for a long hospital stay, give you a reference for an excellent Internist, GI doc, Colon/Rectal Surgeon, General Surgeon, Endocrinologist, Osteoporosis Specialist, Urologist, Physical Therapist, Dermatologist, Hematologist, Oncologist, and Shrink and give you a run down of the pros and cons of just about every pain medicine on the planet!