A chronically ill Christmas

The holidays mean something completely different for those of us with chronic illness.

You know you're from Pittsburgh when Troy Polomalu is enshrined on your tree

You know you’re from Pittsburgh when Troy Polomalu is enshrined on your tree

Someone who isn’t blessed (cursed?) with one of these lovely diseases often finds themselves stressed after the holidays.  All the hustle and bustle, the shopping, the cooking, the traveling the entertaining usually takes a toll on the healthiest of our society.

Imagine what this time of year does to someone with an illness that is negatively affected by stress.

Merry Christmas!!

This is my 8th year celebrating while sick.  The first one was absolutely awful.  I could barely drag myself out of bed.  And when I did make it to my family’s annual holiday party, I was ridiculed, put down, cruelly made fun of because I couldn’t help with the clean up.  That is why I live 1500 miles from said family.

I have learned over the years to pace myself.  To not get so damn ambitious and try to do EVERYTHING that is associated with this time of year.

As most people with chronic illness know, just leaving the house can be an ordeal.  The crowds at the mall or a store can just suck the energy out of you.  For me, it seems the larger the crowd, the more my energy is drained.

I have learned to do as much shopping as I can online.  I have had an Amazon Prime account for years, and that helps tremendously.  Its $80 per year, but it pays for itself.  Being that I have many relatives far away, including my bonus son, just eliminating the chore of going to a store, fighting with the crowds, then going somewhere else and shipping said gift is lifesaving.

My bonbon tree.  The colored ones are oreo and the brown ones are peanut butter.

My bonbon tree. The colored ones are oreo and the brown ones are peanut butter.

I also plan my baking and cooking carefully.  I do a little bit at a time.  For instance, I baked a bunch of sugar cookies for Sunshine’s class party.  I doubled the recipe so we’ll have cookies here for Santa.  I cut out and baked the ones for Sunshine one day, then decorated them the next.  I froze the dough that I’m going to use on Christmas Eve.  I’ll cut out, bake and decorate those in phases too.  It all doesn’t have to be done at one time.

And no matter how much I wanted to make a gingerbread house from scratch this year, I conceded that it probably isn’t going to happen.  So I bought a pre-made gingerbread house that me and Sunshine can put together.

I also made my dessert for Christmas dinner WAY in advance.  Bon bons.  Fairly easy to do, just a lot of mixing.  I really need a good hand mixer.  So those are chilling in my freezer until Christmas.

I’m trying to pace myself.  My parents had a party yesterday, and I did more than my part.  I cleaned, cooked, mixed, entertained.  But I did it all on my terms.  I rested very frequently.  I would do something for 10 minutes straight, and then rest for 20.

My FAVORITE light display

My FAVORITE light display

I divided the wrapping over a series of weeks.  I started shopping in November, and as of right now, everything is wrapped and hidden.  I did a few things one day, a few things the next.

I have gone out with Sunshine on three separate occasions to look at Christmas lights.  I picked the warmest nights and we spent some much needed “Mama-Baby” time just driving around and admiring the displays.  Its the little things that make this time of year so special for me.

I am nervous about traveling to a colder climate this week after all the excitement.  After 20 minutes of sitting in one position, I freeze up and it’s hard to move.  I’m not looking forward to a three hour flight.  But I get to see my bonus child and my husband’s family and friends, so it’s worth it.

So I’m learning.  Its been difficult over the years, but pacing myself seems to work.  And it  is a hard lesson to learn.  But each year it gets easier.  I don’t have to do EVERYTHING that is associated with this time of year.  I don’t have to do the parades, the insanity, the mad rush.  It’s my own.  I do it to the best of my ability.

Merry Christmas, Happy Holidays, Happy Saturnalia or whatever you celebrate this time of year.  Enjoy the season.  Enjoy your loved ones.  Don’t kill yourself trying to make the “perfect” holiday.  Your health is more important, and you will enjoy it more if you aren’t completely sick for the holiday.

Thank you all for the kind words you have shared with me.  I really appreciate it.  Those of us blessed (cursed?) with these types of illnesses need to band together because no one else understands.  Take care of yourself.

postcard

Does it ever end?

Just got over the concussion, now I have a new crisis.

My initiation into chronic illness came 8 years ago.  I worked in the ICU as a registered nurse.  I’m not sure exactly how it happened, I was on antibiotics that have now been proven to cause these types of issues, but I contracted c.diff.

For those of you who don’t know (lucky you!) c.diff is a spore forming bacterium that is absolutely devastating to the GI tract.  Most people who contract it are ill, older or younger.  Around the time I got sick, they were finding that more and more “healthy” people were contracting it from seemingly innocuous means, i.e. after surgery or while taking routine antibiotics.  I was relatively healthy (no fibro yet) and 23.

They theorize that my strain was the more “virulent” type recently found in Canada and that was spreading its way across the U.S.

Symptoms are usually massive diarrhea, for me, over 24 times per day, along with horrific stomach pain.  They really don’t have effective treatments for it other than more antibiotics.  Some which are toxic.  They are still experimenting with a “stool transplant” (pleasant, I know) to infuse the infected gut with “healthy” bacteria.

I became violently ill and required hospitalization.  Twice.  I was losing massive amounts of fluid from the constant diarrhea, and the pain (the churning) in my gut was unbearable.  I came thisclose to requiring a colectomy and pooping into a bag for the rest of my life.

About four months into the c.diff infection, I was diagnosed with fibro.  The theory there being that the overwhelming infection triggered the fibro.

It was 9 months and down 40lbs (which I couldn’t afford to lose at the time) later when I was finally deemed infection free.

The day I received this news was the day I found out I was pregnant with Sunshine.

Unfortunately her biological father wasn’t as happy as I was at the news.  We were married for less than a year when I got sick.  And the toll of the medical costs, the loss of my income (since I couldn’t work) and the stress of my illness more than likely contributed to the demise of our marriage.

Given the overwhelming immune response that occurred, they (the docs) think my autoimmune issues might have been triggered at this time as well.  Which leads me to present day.

I haven’t relapsed since 2006, but I have had GI issues since that time.  I have been extremely cautious about any antibiotic use.  I also found that I have to be VERY VERY careful with NSAIDS (think ibuprofen, naproxen, etc).

After concussion #4 I was prescribed some heavy duty NSAIDS.  I developed bleeding in my stomach after that.  It was treated easily with Nexium, but from then on I have had to stay away from any type of pain reliever other than Tylenol or Tramadol.  Fun for someone with a chronic pain condition.

The long term steroids further damaged my GI tract. And with this last concussion, and the subsequent migraines it spawned, and the fact that I twisted my knee exercising, I dipped back into the ibuprofen.  My migraine meds have naproxen in them.  And now I’m completely screwed.

I’m having bleeding again, horrific gastric reflux, and severe pain right under my sternum.  I wake up with a sore throat every morning.  I’m changing my diet as to not increase the pain, but it really isn’t helping.  I’m eating Zantac twice a day.

The pain is about 6-7 in my stomach for most of the day. And its getting worse.

I have an appointment with a GI doc in January.  I’m hoping that my PCP can call in something like Nexium to quell this volcano in my stomach.

And did I mention that I’ll be on the East Coast for the week between Christmas and New Years?

I’m stressed, the family issue is tense, and Christmas is a week away.

I’m just hoping that I get some relief soon.

Happy birthday Sunshine!!

barbie

These are the cupcakes I made for her “kid” party.

 

Sunshine turned 7 last week.

I am just now recovering.

I am thrilled that everything went well for her (and us).  People behaved for the most part.  Sunshine behaved and was a gracious guest.  Her friends were wonderful.  I’m so lucky to have wonderful friends who helped as well.

She had a spa party.  Four little girls here for five hours.  Wow.  That was fun.

She loved it.  The woman that did it was absolutely fantastic.  She was very friendly, very patient, even when the girls decided to have each hand/foot painted with different colors of nail polish.  Some wanted specific patterns.  And the lady was so fantastic.

sunshineShe brought EVERYTHING with her, including a table, all the craft supplies, and even chairs for the girls to sit in during their manicures.  That is what I wanted.  I wanted to do this for Sunshine, but with my health, I couldn’t commit to doing it all myself.

Sometimes with chronic illness, you have to sit down and decide what is more important:  saving money, or saving your health.

And I am incredibly happy that I hired someone to come in and do this.

I just watched her do her spa party thing.

I also had one of my friends come over to help referee the girls.  But it wasn’t needed, the girls were so well behaved.

And afterward, one of the moms stayed over for awhile and chatted.  That was so nice.  And I didn’t have to clean up a huge mess.  I am so happy I did this.

The next night, we had family over for cake and appetizers.  It was so nice.

I did text Sunshine’s birth father.  Not to have him contact her, but more to remind him that she exists.  For some reason, that is important to me.  I still haven’t had an actual phone conversation with him in 18 months.  He doesn’t respond to any of my texts.  I occasionally send him pics of her.

I just feel that he has a right to know how half of his DNA is doing.  I know I’m being way too nice.

Sunshine is doing better with that issue.  She is still seeing a counselor.  She asks occasionally if I have heard from him.  I always ask if she wants to talk to him, and she says no.  She is mainly concerned because she got to know her stepsisters and half sister, and that contact was abruptly cut off.

She wants a sibling so bad, so I understand her desire to have a connection to them.  She speaks with her stepbrother on the phone regularly.  And they spend every summer together.  But the idea of having “sisters” is so appealing to her.

It’s been seven years, and I am still in awe of her.  As she has grown, I am impressed more and more with the lovely little lady she is becoming.  She is smart, friendly, happy.  A bit sassy.  She understands things way beyond her years.  She is so kind.  I am so lucky to be her mama.

Sometimes I just look at her and it brings tears to my eyes.  I can’t imagine my life without her.  She has changed me in so many ways for the better.  By being her mom, I’m a better person.  I’m more patient, I’m less impulsive, I really don’t care what others think of me.  I’m fine being silly with her at the park or at the mall.

I love the conversations I have with her.  I love how she tries to figure things out.  I love being witness to how her brain works.  And she is hilarious.  She isn’t afraid to be herself.  She isn’t afraid to be silly, to pretend to be a cheetah (or hyena, or wolf, or lion) in public.  She isn’t afraid of being a “tomboy”.  She likes to make a mess, to laugh at fart jokes, to wrestle with her daddy and brother.

I hope she never loses that part of her that isn’t afraid of what others think.  I know the years ahead are fraught with image issues and friends and gossip.  I just hope she retains her sense of identity.  Stays grounded to the person she is at her core.

I hope that I continue to be an awesome mom.  That I say the right things at the right time.  That I make sure she feels loved and cherished every day of her life.

So happy birthday, Sunshine!!!

cake

 

 

 

Baking for Sunshine

The "Rudolphs" are for the boys and the "Clarices" are for the girls

The “Rudolphs” are for the boys and the “Clarices” are for the girls

Sunshine turns seven this week.

Where did the time go?

In typical Sunshine fashion, she has commissioned her Mama to bake two sets of cupcakes for her birthday.  One set for her class at school, and one set for her “kid” party on Saturday.  There will also be another cake for her “family” party on Sunday.

Above is her “class” cupcakes, further divided into the girls receiving the appropriate “girl” cupcake and the boys receiving “boy” cupcakes.

Her “kid” party is a “spa” party.  I found a company in the area that comes to the house and does “spa” parties, i.e. mani/pedis, facials, etc.  Not too expensive either.  I figured I could do the same by myself, but with my health and the fact that my husband will be sleeping during party time, I am pretty much paying for the bonus of not setting it up, not cleaning up and not dealing with several six and seven year old girls by myself.

And with this week’s concussion issue (which I am still struggling with) I am so glad I made that decision.

Today was worse in terms of nausea, dizziness, head pain and fatigue.  I slept until 1:30 pm, completely unintentionally.  My husband slept until that late too, that was after we got up with Sunshine and got her out the door for school.

Sunshine hasn’t recovered from the return to standard time last month, and in combination with the recent stress in the house, has reverted to waking up every night.  Sometimes multiple times per night.  Great.

So I was completely out from 7:30 onward today.  I mean NOTHING was waking me up.  And it was nice to sleep that long next to my husband.  I truly do miss him when he is at work.

I am feeling a little bit better than my last post.  I went to therapy and I’ve been having some amazing support from my friends.  The situation itself hasn’t changed, and there are many times a day when I feel defeated.  But right now I’m ok.

And I now have health insurance again!!!  Yay!!

Hopefully I survive the weekend without too many issues.

Concussion #5

This will be a short post.  I can barely stand looking at the screen.

Sunshine gave me my fifth concussion while we were swimming.  Number 4 also came from her as well a few years ago.

 Apparently concussions are like Pringles…once you pop…you can’t stop.

So I am on bedrest.  I’m really not supposed to be doing ANYTHING.  No TV, no music, no reading, no internet, no texting.

I’m obviously very compliant with doctor’s orders.

As you can imagine, this newest development isn’t going over well with my living situation.

At least the pain is better today.  But the dizziness…wow.

I have to stop…ick.