V: Vanity

 

I know it is stupid to think about when you are fighting for your life, your vision, your health.  But at least to women, looks are important.

I would like to be that woman that says “I don’t care what people think” but its a lie.  When I was REALLY REALLY sick I was puffy, I looked like something the cat dragged in, I gained 40+ pounds.  I felt awful, I knew I looked awful.

My husband was fantastic, of course.  I’m very lucky that he pointed out to me what I was going through.  That it wasn’t important.  That my health was important.

But I did things that made me feel beautiful.  I took care of my skin.  I would occasionally dress up (that usually meant something other than yoga pants).  It was just important to me.

Now that the weight is FINALLY melting off, my hair isn’t falling out and I don’t look like Michelin Man, I feel better on another level.

The point is, for women at least, take some time if you are sick to make yourself look good.  It could be as little as taking a long bath and using nice lotion.  Its important on another level.

L: Love

 

I have other plans for “M” so this post goes here.  And since marriage isn’t an equal right *yet*, it is unfair to put this post in that category.

Chronic illness wreaks havoc on one’s love life.  It played a pretty major role in the devastation of my first marriage.  I think I would have eventually figured things out, but my diagnosis definitely helped me see his true colors a lot sooner.  So in that case it was sort of a mixed blessing.

With my second marriage, my husband knew me in all stages.  Pre-illness #1, pre-illness #2 and he has loved me and stood by my side as a friend or lover through all of them.  I remember talking to him on the phone while hospitalized during illness #1 (while married to husband #1).  He was puzzled why my husband at the time wasn’t there talking to me. That should have given me all the answers I needed right then.  Not once during that hospitalization or subsequent ones did he EVER stay more than an hour or two in the hospital.  Including the birth of Sunshine and HER brush with illness when she was three months old.  Some people just don’t do well with those types of situations.  You find out who they are after a life altering diagnosis.

But this isn’t a “bash my ex” session, I have another blog for that.

Relationships are difficult by nature.  Just look at the divorce rate.  Add in the stress when one (or both) parties are sick and that divorce rate can skyrocket.  It happened to me.  I was told after we split “I fell out of love with you when you got sick”.  And that is a direct quote.

I am lucky that a friend who has been by my side FOREVER wanted to be more than a friend.  I was lucky that he accepted my illness that I had at the time and still wanted to marry me even AFTER I got yet another diagnosis.  I was diagnosed with the autoimmune in my eyes literally days before our wedding.

It isn’t always hearts and flowers.  Right now we live with my parents because I couldn’t work for 18 months.  My meds are expensive.  When I was on steroids my mood swings were legendary.  My migraines are horrific.  I gained a tremendous amount of weight on the steroids that I’m still trying to work off and for awhile I resembled Shrek.  Our first year of marriage mainly consisted of doctors visits, eye injections, chemo injections every weekend, nausea and weeping thanks to the dreaded steroids.  We didn’t even go out to dinner for our first anniversary because we couldn’t afford it.

So many times I was terrified he would say “I can’t deal with this bullshit.  I’m gone”.  I even told him right before our wedding that he didn’t have to go through with it. That he deserved to be with someone healthy, that he had a free pass and we could still be friends.  He still married me and he has stayed.  He has been everything I ever wanted in a partner.  He is (mostly) calm, very compassionate, very intelligent and inquisitive about what is going on, willing to help out with everything that I can’t do.  He understands my limitations.  He doesn’t expect too much from me.  He actually asks how I’m feeling, he knows what exhausts me.  He encourages me to rest ahead of activities that he knows drain me. I’m very lucky.

Is it perfect?  No.  Do we argue?  Yes.  Do we get sick of each other, of the situation, of everything? Yes.

What helps that he is a scientist.  He has a degree in chemistry.  It is in his nature to understand my conditions and to understand why I am taking what medication and when and what it is supposed to do, what its side effects are.  He even read up on my conditions when we were friends and when he had absolutely no intention of spending eternity with me. That was just because he wanted to understand me better as a friend!  He gently reminds me to take care of myself.  He knows I forget to do that because I’m a nurse, it is in my nature to take care of everyone else first.  I will forget my meds, forget to call in refills, forget doctor’s appointments.  So he makes sure I take care of myself.

He goes to most of my appointments with me.  He is my advocate.  I forget things that he might mention and he sees things that I may miss.  I may be an awesome nurse, but I am an awful patient.  My husband will likely mention something to the doc that I have forgotten and it usually makes a difference.  And it is so wonderful to have him there as a support.

And when we do get fed up (especially now living in such close quarters), we talk about it.  Usually over text.  Communication seriously is the key. I know it sounds cliche but if he knows I’m acting a certain way because I’m late on meds (again) or because I’m having more pain because I’m not sleeping, that helps him more than him thinking I’m mad at him for no reason.

And I know that for me personally, having someone that dedicated and committed to me and my well being is paramount to my health, emotionally and mentally.  And that in turn helps me physically.

Maybe all you need is love after all.

 

 

C: Corticosteroids

C

 

Corticosteroids:  IMHO are the fucking devil.  But according to MedlinePlus

You may have heard of anabolic steroids, which can have harmful effects. But there’s another type of steroid – sometimes called a corticosteroid – that treats a variety of problems. These steroids are similar to hormones that your adrenal glands make to fight stress associated with illnesses and injuries. They reduce inflammation and affect the immune system.

You may need to take corticosteroids to treat

  • Arthritis
  • Asthma
  • Autoimmune diseases such as lupus and multiple sclerosis
  • Skin conditions such as eczema and rashes
  • Some kinds of cancer

Steroids are strong medicines, and they can have side effects, including weakened bones and cataracts. Because of this, you usually take them for as short a time as possible.

That definition barely scratches the surface.  Most people who have autoimmune disease are put on steroids at some point.  The side effects are awful and the above definition doesn’t do them justice.  Think of the Hulk, if he was weakened from fatigue, doughy from weight gain, and probably cried all the time from the mood swings.  No SMASH, more EAT!!

hulk

 

I was on high dose steroids for over a year.  I even had steroids injected into both of my eyes.  It sucked.  I gained 60lbs, I now have cataracts in both eyes, my stomach lining is permanently irritated and I will forever have nasty reflux.  Not sure about my bone density.  I will do everything in my power to stay off of these meds.

They taste awful too.

Day 25

Your favorite:  recipe and comfort food

This one is tough.  I absolutely love Italian food.  I can’t handle the tomatoes too much with the acid reflux, but I love alfredo sauce, lasagna, garlic bread, seafood pasta, ravioli.  Its great that I eventually married an Italian.  When we were visiting his family at the end of December, his aunt made amazing food for us.

So here is a recipe:

To Die For Fettuccine Alfredo

  • 24 ounces dry fettuccini pasta

  • 1 cup butter
  • 3/4 pint heavy cream
  • salt and pepper to taste
  • 1 dash garlic salt
  • 3/4 cup grated Romano cheese
  • 1/2 cup grated Parmesan cheese

Directions

  1. Bring a large pot of lightly salted water to a boil. Add fettuccini and cook for 8 to 10 minutes or until al dente; drain.
  2. In a large saucepan, melt butter into cream over low heat. Add salt, pepper and garlic salt. Stir in cheese over medium heat until melted; this will thicken the sauce.
  3. Add pasta to sauce. Use enough of the pasta so that all of the sauce is used and the pasta is thoroughly coated. Serve immediately.

 

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…

Guilt

There are all kinds of guilt.  Catholic guilt, Jewish guilt, survivors guilt.  What about chronic illness guilt?

Today I am really feeling it.  My husband is taking steps to get a better job (full time, with benefits) so that we don’t end up moving in with my parents.

The thing is, he will also be working at his current job during training.  He will be doing training in the morning, and his current job in the evening.  That’s 12 hour days for him for the next month.

This past weekend was a whirlwind of activity.  Egg hunts, hockey games, the annual Easter get-together on my uncle’s ranch, which is an hour away.

I was exhausted way before Easter.  I spent most of the time yesterday just sitting on the couch at my uncles.  I really had a hard time even functioning yesterday.

So the exhaustion carried over to today.  I forgot to set my alarm, and Sunshine slept through hers, so she missed the bus.  That means my husband had to take her to school.  It was not a pretty morning in this household.

I feel like I could pass out now.  But there is laundry to do, a mountain of dishes, various bits of the Easter holiday spread throughout the house.  Candy here, an egg (plastic) there.  It looks like a Easter tornado hit this apartment.

Plan is for me to go back to sleep for an hour or two.  Then start trying to whip this place into shape.

The guilt.  I feel insanely guilty about being sick.  Down to the pit of my stomach, I feel awful.  The plan was that I would work full time so that my husband could go to nursing school.  I haven’t been able to return to work, so I lost my job in January.  Along with my  benefits.  I was pulling the benefits for everyone.  And I couldn’t get better in time to save my job.

His mother passed away a week before the end of the summer semester last year.  Even though he had a near 100% in the class, they would not allow him to do the final when he got back to Texas six weeks later.  So he now has to take this class over and THEN he can apply to nursing school.

I’m doing everything I can with regards to applying for assistance, attempting to generate some income.  Saving the little money we do have.

But the words of my ex-husband rings very loudly through my skull “I fell out of love with you when you got sick”.

I’m terrified that history will repeat itself.  I am overweight, I look like the marshmallow man from Ghost Busters.  I’m not just fat, I’m swollen.  My face is swollen, my feet, my fingers and my abdomen.  I now have really bad acne.  I hate the way I look.  Its to the point that I can’t look in the mirror anymore.

And I can’t get the house into a state that is acceptable to my husband right now.  He is a little OCD.  He has explained time and time again that the state of the house influences his anxiety.  If it is cluttered and out of order, he feels cluttered and out of order.

The problem is, I learned years ago with the fibro that it is virtually impossible for me to be on top of everything at all times.  It goes back to the gas tank theory.  I only have so much energy.  I would rather spend that energy on playing with my daughter or attempting to generate income.

Yes, the dishes need done (that is a priority) and food needs to be cooked.  But in terms of dusting, running the sweeper, laundry….I feel those things can wait.

So my husband will be a crazy ball of stress for the next month.  And I can’t keep up with the things that keep his anxiety at bay.

I feel such intense guilt.  Guilt that I can no longer produce, guilt that I can’t be the wife I would like to be.  Guilt that I look hideous.  Guilt that I am sucking up all of the money we do have to pay for meds and doctors.  Guilt that I can’t just push through it and do it all.  That I’m not strong enough to just overcome this illness.

I’m not terribly religious, but I’m starting to pray that I get through this.  That we get through this.  That things will be better in the coming weeks and months.

Positive thinking:  I got to see my family over the weekend.  I hadn’t seen most of them since Christmas.  It just feels good to belong.  To be around people I have a common bond with.  I rarely get out of the house these days, so it was nice to get out, get some fresh air and a tiny bit of sun.

SPRING BREAK!!!

Ah, yes.  A wonderful time of year.  Here in Texas (at least in the area I live in) all the school districts have a similar calendar.  Including the colleges.  So both Sunshine and my husband are off this coming week.  My mom teaches as well, so she is off.  And its my birthday this week.  Oh and SXSW is going on.

I would have loved for something like this to occur when I was growing up.  “Spring Break” referred to the two days I got off from school right before Easter.  But if it was a bad winter, most of those days were “make up” days so that the school district could get 180 days of school in before June 30th (as per law).

Sunshine had an entire week off for Thanksgiving, nearly two and a half weeks off for Christmas, and now spring break.

She is already enjoying it.  She has been outside most of the day today.  And she came back from my parents house with shoes that were still oozing mud.

I just hope my health can improve so that I can do things with her this week.

I’m still couch bound.  But that’s an improvement from bed-bound, which is how I spent my morning.  With my legs elevated.  My blood pressure bottomed out.

I understand that medications (especially in my body) are pretty potent.  I just don’t like the blood pressure yo-yo.  I feel awful.

I have been through childbirth (assisted with an epidural).  I have fibromyalgia.  I have a 17 year history of migraines.  But nothing was like that wicked headache I had last week as a result of my blood pressure.  That was such intense pain.  Not in my usual migraine areas.  I swear I still feel the effects of it.

Its like a never ending loop.  I feel awful so I can barely navigate through my apartment, let alone exercise.  I gain weight as a result of the meds.  I also have lovely side effects like tachycardia and hypertension.  But in order to (naturally) deal with those issues, I have to exercise.  And lose weight.  Grrr!!

Ok.  Positive thinking.  Sunshine.  Just watching her interact with her friends, with my husband…its such a treat.  She is quite a mighty little human, and she will definitely be a force to be reckoned with as she grows.

The things that come out of her mouth are priceless.  Just seeing the way she thinks, how she goes about solving problems or analyzing a situation is incredible.

She blows me away almost every day with her intellect, her sense of humor and her zest for life.  I am truly blessed to be her Mama.

My goal this spring break is to relax and have fun with my family.  I’m sad that I will probably have to skip SXSW because of my health.  But maybe I’ll get a boost of health later in the week and I’ll be able to at least wander downtown and find some great music to listen to.

And I’m grateful there is no snow on the ground 🙂

WARNING!!

True!!

My replies:

1)   Thank you!  But I now look like a hippo.  I looked much better with color to my cheeks, no bags under my eyes, and no mysterious bruises or rashes.  (Or I should just hand them a pic of me at my wedding and say “this is what I REALLY look like”…oh and I got married 8 months ago).

2)  Does everyone have to do a countdown prior to heaving themselves out of bed every morning?  I think not.

3)  Yes.  And there are starving children in Africa.  Your point is?

4)  I wish.  Why don’t you snap out of being an a-hole.

5)  Maintaining my sight and staying out of the hospital  is a full-time job.  And since I no longer have health insurance, me staying out of the hospital is saving YOU money.

6)  No you don’t.  There isn’t anything to watch on TV (pretty much anytime of day), there are only so many websites you can visit, and there are only so many positions your body can tolerate for a given period of time.  Eating in  bed also has its drawbacks.

7)  I wish.  If I go out in public, I risk getting sick.  If I sit in the sun for longer than 5 minutes, I risk some serious sunburn.  If I do the wrong type of exercise, I run the risk of breaking a bone or snapping a tendon.  If I walk further than I anticipated, I risk not making it back.  Again, keeping me OUT of the hospital is saving YOU money.

8)  That’s great.  And do they walk on water?

9)  Right.  If you had pain like this, you would be in the ER.

10)  I’m a nurse.  Your point is invalid.

This is the flu that doesn’t end..

Lambchop.

Lambchop.

This is the flu that doesn’t end,
Yes it goes on and on my friend!
Somebody infected me, not knowing what it was,
And it is lingering forever just because,
This is the flu that doesn’t end…

Sorry for putting that song in your head (for those of you who know what its from). This is the longest I’ve felt ill with a cold/flu in a number of years (well, since the H1N1 debacle of 2009).

I felt better yesterday, and possibly did too much, so maybe that is why I feel like hell today.

I can breathe, which is always a plus, but I feel so sluggish and sleepy. And I stopped the NyQuil two days ago.

I took a three hour nap in the middle of the day. I haven’t done that in least a month or so.

And there is still a lot of pressure in my head, judging from the constant ear popping.

I am also experiencing a sore throat today, which is rare for me since I had my tonsils ripped from my skull 10 years ago.

I already feel sick 24/7 as it is.  I despise feeling “extra sick”.

I’m also pissed that I was doing so well with the exercise almost everyday for two weeks.  This illness has stopped that momentum dead it its tracks.

I have the desire to do yoga.  I have done some stretching in the last week, but I haven’t gone to yoga class or done a structured yoga video since Feb. 15.

The good thing is that I got to skip my weekly dose of poison due to the immune system implications.  WOO HOO!!

So, hopefully I feel better for the rest of the week and I can get back on that exercise plan.

Oh and my “healthy” eating took a break too.  I wasn’t actually eating ANYTHING so I put the diet on hold.  I have been eating oranges everyday (some times more than once a day) because I know the vitamin C helps.  The added folic acid can also help as well.

I am still drinking mostly water, but I have slipped in terms of sweets (I felt well enough to make my famous peanut butter chocolate chip cookies yesterday).

I hate these carb cravings and I’m actually counting down the days to my next eye appointment.  With the increased dosage of methotrexate (15 mg given SC q week), the docs are hoping that the inflammation in my eyes (and hopefully the increased pressure) will decrease.  If that happens, I might be able to taper off of the steroids completely.

Even though I’m putting in the effort, I feel that I may not see any kind of results with the weight until I am completely off that medication.  My fingers are so puffy I can no longer wear my wedding rings 😦

I’ll continue trying.  That’s about all I can do…right?

Ow!!

Image

© Razvanjp | Stock Free Images & Dreamstime Stock Photos

Wow.  I am in some pain.

I asked my husband to go with me to the gym yesterday to show me how to not kill myself when working out.

He goes to a boxing gym, and has been taking high-intensity, boxer-centered classes for the last year.  He goes to his gym at least four times a week.

Maybe that was my mistake.

He was showing me how to do lunges and squats and I realized I am insanely weak.  Eight months of steroids has taken a toll on my body.  Not that I was Ms. Muscle to begin with, but I noticed a significant difference.

And then after discussing these exercise plans of mine with my dad, he got upset and said “you are on steroids, you are going to snap a tendon”.

Fantastic.  So I looked it up, and even though I knew that muscle atrophy was a complication of long term steroids, I wasn’t aware that there were actual cases of tendon rupture.

And today I woke up in immense pain in my legs.  I don’t think that I ruptured anything (or I probably wouldn’t be walking), but I have been in immense pain all day.  Nothing is helping it.  Not stretching, not a hot bath, not meds.

I have an email into a friend of mine that is a personal trainer, and hopefully he can help me out.  I do plan on going to the gym tomorrow (granted that I can walk) and doing the cardio.

I guess overall I have to go VERY VERY slowly.  Not everyday, and work up to more intensity.

Anyone out there know any websites I can visit about exercise and steroids?  The only sites I’ve been able to find only confirm what I already know.  I’m looking for some specific, gentle exercises that won’t kill me and won’t “snap a tendon”.