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.

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.

 

Alone

Sometimes I feel so alone.

In my illness, my life and my family.

I could be surrounded by people (like I am now) and still feel completely and utterly alone.

Yes, I have friends.  I have support of my husband.  But when my husband is mad about something that is out of my control at the moment (but essentially my doing) I feel like I’m an island in the middle of the south Pacific.  And with him working nights and sleeping most of my waking hours, it is like an acute pain.

I’m with Sunshine a lot.  I love being a mom, I love reading to her, doing things with her.  But she is six and doesn’t understand why Mommy is sad.  And I can’t (and probably never will) confide in her what goes on in my head.  No child should have to bear the burdens of their parents.  I know this well in my own relationship with my mother.

My friends.  Well, most of them are completely healthy.  They have no clue what it is like in my body.  Why I have to do the things that I do.  Why I can’t eat, drink or do certain things.  And they constantly try to fix everything.  I understand the gesture.  I do it myself often enough when friends confide in me.  But sometimes I know what I’m going to do, how I’m going to remedy something.  I just need to confide in someone.  To get these feelings out before they consume me.

My parents?  Forget about it.  I’m lazy.  I fuck up constantly.  I’m a disappointment.  I’m a failure as a mother.  They sometimes directly say this, but most of the time it is subtle actions and snide remarks.  Or my favorite, the silent treatment.

So right now I feel completely, utterly useless.  Alone.  And the emotional pain is too hard to bear sometimes.

I am seeing my therapist for the first time in over a year in the coming week.  I now have health insurance.

I know its depression.  But I’m trying to fight it.  To rise above it.  To go on and do things when I would much rather stay in bed all day and disappear into a book.

I’ll cry about it in the bathroom soon.  Then I’ll suck it up and go swimming with Sunshine.  I have a child to raise.

Thankful

It’t that time again.

Honestly, I’m thankful everyday for what I have and who I have in my life, but sometimes it’s good to write it down.

This year, I am exceptionally thankful for my husband.  It has been a very dramatic, traumatic first 17 months of marriage.  We are just starting to crawl out from under the ruins of the last year.  He recently got a new job (with benefits!) and he is still working his second job.  I am truly thankful that he takes such good care of me and Sunshine.  I am thankful that he tries to understand my medical issues and also advocates for me.  He never hesitates to tell me to take it easy, to rest, to avoid a certain activity that he KNOWS will result in more pain or a migraine.  I am truly blessed to have such an amazing partner in life.

Of course I am thankful for Sunshine.  She is growing into the “sassy” stage, and even with her talking back, it is hard to keep a straight face sometimes because she is so darn cute!!  She is so loving, so warm.  I love watching her grow and learn.  She has such a good heart and loves everyone.  Today she said “Mama, you know what I’m thankful for?  You.  And that you are getting better”.  Melt my heart.

I am thankful for my friends.  I have some amazing friends that have  been tremendous over the past year.  I have had people that helped me with Sunshine in the morning, friends that make sure I’m getting out of the house, friends far away who just call to see if I’m ok.

I am thankful for my parents.  Even with all that is going on, the daily chaos, we would seriously be without a roof over our heads if they decided not to let us come and live with them.  They do try to help me with Sunshine and are wonderful grandparents.

I’m thankful for the internet.  Through blogging and FB, I know that I’m not alone in this.  That there are other people out there who have what I have and graciously share their knowledge and experiences.  They listen when other people have stopped.

And I’m thankful to still be off of chemo and steroids.  Its been six months for the methotrexate, three months for the steroids.  And despite the fibro symptoms, I feel pretty good day to day.  A year ago I could barely get out of bed.  Now I’m exercising, cooking, taking Sunshine places.  I hope to be able to stay off of those horrific meds and to continue to improve.

What are you thankful for?

A fibro Thanksgiving

I think I overdid it.  Again.

Left knee is KILLING me.  It is a stabbing pain in the middle of my knee cap.  I don’t remember twisting it or jerking it.  So I’m taking it easy today (at least exercise wise) while I try to figure out what is going on.

I didn’t really contribute to last year’s Thanksgiving, because I was too sick.

This year, I’m doing the stuffing and the mashed potatoes.  Oh and I made Steeler cupcakes because they are playing tomorrow night.  And my family loves the Dallas Cowboys.  Just have to remind them who has the most Superbowl wins.

I make my stuffing and potatoes from scratch, so I’m trying to do as much as I can a head of time.

Also, my mom is determined to make this “the most perfect Thanksgiving in the universe” so she is running around here like a turkey with their head cut off.  I think she has rearranged the dining room three times now.

We are expecting around 20 people.

So I did the cupcakes this morning.  It was also a practice run for the cupcakes I’m making for Sunshine’s upcoming birthday.  I just wanted to make sure they turned out ok before the big day.

I chopped the celery, herbs, onions and garlic.  My eyes are still watering.

Sunshine is the “bread” girl, in charge of putting the bread out to stale and turning it over to make sure each side stales evenly.

My mom is doing the turkey, and the rest of our guests bring something.  It should be fun.  I just hope that people can behave for company.

Good Lord.  The several hours I spent on my feet already have NOT helped the knee situation.  No swelling.  Just pain.  I hope it isn’t indicative of something more seriously wrong.  Like RA.  Hopefully it is just overuse.

I’m learning to shake off the constant criticism.  I was asked to clean the bathroom, and again, I explained that I already agreed with my husband that he would take that duty, since the chemicals give me a migraine.  Again, she pretended not to remember that very specific issue I have with strong smells, especially chemical ones.  So I continued with the prep that I CAN do.

If I hear “it is my house, I’ll yell when I want to” one more time, I think I may start yelling.  She yells at inanimate objects, the animals, us, Sunshine.  I don’t want Sunshine subjected to the constant yelling.  Its not good for her.  She is beginning to have issues in school, and recently confided to her teacher about all the stuff going on in the house.  I have a meeting scheduled next week with both her teacher and therapist.

I’m debating on if I should even broach the subject with my parents.  I don’t want Sunshine to continue to suffer, but I’m concerned that voicing my complaints will earn me a spot at the homeless shelter.  I have been threatened several times with expulsion for seemingly minor infractions.

So I hope tomorrow goes well.  I hope that the police don’t need to make an appearance.  I hope that my mother remembers she’s an adult, and that others are entitled to their opinion.  Judging by the screaming match that erupted at dinner the other night (about the news reports of the “knockout game”)  I am really concerned.

Hope you all have a pleasant, pain free, fatigue free holiday!!

PS:  I’ve dropped 20lbs since August!!

 

Body art

I got a tattoo when I was 17.  Its a tramp stamp (just like everyone else of that era).  It hurt, but it didn’t scar, didn’t get infected.  I probably had some hints that my body wasn’t normal at that time, namely the intense shaking that wracked my body during the application of the tattoo, but I was blissfully unaware of my eventual chronic illness(es).

I have always wanted another one (or more). Not  because I like marking up my body, but I feel that it is a form of self expression.  I vowed never to get cartoon characters, questionable quotes or anything I wouldn’t want on my body for infinity.

My brother’s friend has a tattoo of a condom wrapper on his hip.  Classy.  That is not me.

One of my friends is an artist.  She is having a “tattoo party” this weekend, and I’m scheduled to get one.  She drew me the tattoo that I want.  Sunshine.  I think it is very fitting.

I’m planning to get it on my upper back, between my shoulder blades.

I have been reading up on tattoos again, and the issue of autoimmune disease came up.  I’m asking the tattoo artist if he is comfortable doing work on someone with my health history.  I haven’t heard back yet.

I guess the main issue is scarring.  Again, it is not know exactly what I have.  I have an autoimmune disease that is primarily affecting my eyes, but they are unsure if it is localized to just my eyes.  I do scar and keloid, but I did that prior to diagnosis.  I had no problems getting my initial tattoo.

I am not currently on steroids or any other immunosuppresants.

Any stories y’all want to share?  Anyone get body ink after diagnosis?  Thank you!!

We won’t get fooled again…

Yes, I’m a classic rock fan…

I’m extremely angry, hurt, sad right now.  I moved in with my parents with reservations.  My mom is seemingly incapable of compassion and support on a regular basis.  My dad is fine, he’s quiet and usually doesn’t do well with hearing anything about my illness, but at least he’s consistent.

My mother on the other hand is just being cruel.  For awhile, she was very supportive “honey, do you need to rest? what can I do for you?” Today she just got vicious.

I have been flaring for the past two weeks.  Pain, fatigue, insomnia.  This isn’t a new phenomenon.  It has happened nearly every year since I was diagnosed in 2005.  When the weather changes, I get sick.  Usually with a combo of fibro symptoms and migraines.  This year is no different.

My mom is obviously unhappy.  She and my dad aren’t getting along, she hasn’t really dealt with my grandfather’s sudden death, she had a pretty traumatic trip up to Pittsburgh in August when she was visiting my grandma.  Threats were made, names were called.  It was awful.  But the difference between me and her is that I would have DEALT WITH IT.  She absolutely refuses to go to therapy.  Everyone else is the problem.  Everyone else is treating her poorly.  She’s fine.

It is pretty clear to me, as her daughter and as a medical professional, that she is experiencing depression.  She is sleeping a lot more, she is irritable, she is spending more time in front of the TV.  She is creating issues and problems and at least once a day throws some sort of hissy fit.

She is deliberately picking fights with me, I think in an effort to exercise some of her pent up emotions toward her family, my dad and with regards to her grief.  Yet, she always seems to make it about me.

According to her, I’m pulling out the “sick card”.  I’m using my illness to my advantage.  She knew this would happen.  Fuck, I KNEW this would happen.  But my back was to the wall.  She promised she would be supportive.  She told me that she understands and will make her best effort to help me.  Right.

Here is an excerpt from her latest text.  BTW, this latest argument is because I told her I can’t clean the bathroom today because I feel like shit, I offered to clean the bathroom tomorrow with the help of my husband (since the chemicals bother me) but she refused:

No, I’ve been fooled too many times to accept your solution. I understand your illness, just don’t honor it like the rest of the family and will call you on it just like you pull out the sick card when is suits you.

She continues:

I don’t think you realize how your illnesses have affected your family.  Hell no they aren’t going to say anything that will conflict with your statements of ill health, its easier to shut up and do it.  Me, not so much…your illness has become the center of your family life and I’m not sure if it is healthy for anybody.

Now, she is speaking for my husband again.  I have a very open and honest relationship with my husband.  Trust me, he is not afraid to share his opinions when it comes to my illness.  The fact that we are still together after four years and one extremely dire year of illness and upheaval speaks volumes as to the type of relationship we have.

I have adapted well over the past eight years.  I am raising a wonderful child who has also adapted to my illness.  Is it perfect?  No.  But I honestly feel that I am doing better than most.  And according to her therapist, Sunshine is extremely well adjusted and my illness is not having any more impact that normal on her development.  Keep in mind that I was diagnosed BEFORE her birth.  I knew she wouldn’t have a normal childhood.  But I wanted to bring her into the world anyway.

Just because things aren’t done to my mother’s specifications and done on her time schedule, it is a problem.  And to bring in my family life when she has no idea what she is talking about, that is just cruel.

I guess it hurts more because its my mom.  She is supposed to love me.  She is supposed to support me and have compassion for me.  It also hurts more because she has periods where she is so supportive.  Where she encourages me to rest, to conserve my energy.  Where she “understands” that I’m not feeling well and doesn’t expect me to jump when she says jump.  This about face is what really twists the knife.

So now, unless we give her more money, she won’t feed us.  We are “on our own”.  I paid up in the beginning of the month.  I have the cancelled checks.  Extortion.

So I will pick up Sunshine and will go to the park until my husband is off of work.  Then we will find dinner.

This makes me sick.  It makes me so very upset and angry and frustrated.  I’m trying my best.  I’m exercising, I’m eating better.  I’m taking my medications and following doctors orders.  I’m trying to strengthen my body so I can continue to work.  Other people see it, namely my dad and my husband.  Hell, even my friends see it.  But she just has to make an issue about something.  There can’t be one day without her having some sort of dramatic fit about something.  And it hurts.

I do want to clarify that we are pretty awesome house-guests.  Everyone does something.  I cook and do the dishes and my laundry.  So does my husband.  We aren’t noisy, we aren’t pigs.  Sunshine even picks up after herself.  My bathroom wasn’t spotless and she chose to make it an issue.  I understand that it is their house, their rules, but I expected a little bit of compassion and flexibility.

I won’t make that mistake again.

I will be back in therapy by the end of the November.

Being Mummy

I love Halloween.

I am thrilled to be able to actually participate this year.  Last year I was essentially chair/bed bound for most of the festivities.  My husband took Sunshine trick or treating, and I missed out on my annual 6th street Halloween bonanza in downtown Austin.

This year, I’m feeling better.  I’m taking Sunshine door to door.  We are being a Mommy leopard and a baby leopard (her idea, not mine, but its cute).

And I’ll retain the leopard costume for my own Halloween partying this weekend.  Only a bit more risque.  Despite the fact of my massive weight gain (which is slowly melting off), my husband still makes me feel like the sexiest woman alive.  I feel confident enough in my body that I can look sexy despite the extra padding.  I never had that kind of confidence in a relationship before.  And I’m grateful to him for loving ALL of me.

I am also hosting Sunshine’s Halloween themed Girl Scout party this week.  I wanted to go all out.  I like baking, and I wanted to do something really cute for the girls.  But I’m still flaring (although not as bad).  So the Halloween themed snacks will be scaled down.

But at least I’m well enough to participate.

And I will have health insurance at the end of November via my husband’s employment.  That is such a relief.  I am seriously in debt from the past year.  It’s wonderful to know that if everything does flare back up again, I can afford treatment this time around, and not add to the already mounting debt.  I am struggling with Sunshine’s sperm donor to get the documentation needed to get her covered, either via my husband or from the state.

At this point, I highly doubt I will be able to return to full time work.  I have worked my ass off since the end of August, and it is taking a toll.  It was only five hours per day, but I’m exhausted.  I hurt.  Not enough to keep me in bed, but enough to make things a bit difficult.

I’m not sleeping again, I was up til 3 last night and woke up at 7 to get Sunshine off to school.  Then I went back to sleep until noon.  I didn’t plan on it, but my husband was wonderful enough to let me sleep.

I’m babysitting one of Sunshine’s friends today, and I am planning on taking them to the park.  I was going to get my workout clothes on and walk with them, but I’m too tired.  I may do something on the exercise bike tonight.  My parents have a stationary bike that I can use.

Wow, typing is really flaring up my joints right now.  Hasn’t happened in awhile.  Shit. If this continues I may need to see my docs sooner rather than later.  I hope it holds off until I get insurance…

Flaring and a quick update

First order of business….the inflammation in my eyes is back.  Not horrible, not enough to require treatment.  But its back.

That was a little disheartening.  But we did have a conversation about future treatment, should I need it.

I have been off of steroids for nearly two months.  Off of chemo for almost five.  I do not plan on EVER going back on those meds.

Doc said if he needs to treat the new inflammation, he will do steroid injections into the eye.  Which is what I wanted to hear.

So that’s good news.

Fibromyalgia has been rearing its ugly head again.  I’m pretty sure it is weather related, as the temperature actually dipped into the 40s here.  That morning I woke up and couldn’t move.  At all.  Fuck.

It took me about 45 minutes to actually get out of bed and get moving.  I went to work.

But each day since it has been better.  Still needing some help in the morning with Sunshine, but overall much better.

I plan on resuming my workout tonight.  Hopefully I can move tomorrow.

Thank you for all the likes and follows and support.  I really appreciate it.  I know this journey isn’t over yet, but at least I’m in a better place than I was a year or even six months ago.