Too good to be true..

awwww

I spoke too soon. Sunshine woke up several times through the night screaming in pain. Fantastic.

I was hit with a severe wave of pain yesterday afternoon that nearly took my breath away. It was 7-8 on the pain scale and located in my fingers, elbows and shoulders. An aching, throbbing wave of pain.

I still managed to ice 4 dozen  pumpkin cookies for Sunshine’s teacher appreciation lunch today.

 

And I started on a migraine last night and I can’t find my migraine pills and I may actually be out of them. They are $50 for 18 pills. I don’t have that kind of money with rent being due this week.

Sunshine is the priority. No school today for her. I called the doc, he said she might be getting dehydrated, she might have overextended herself yesterday in her first day back. He said she needs to be eating and drinking constantly. So I have been sitting in the living room with her since 6 a.m. coaxing her to eat and drink. She despises the chloraseptic throat spray, so I gave her the hard hitting pain medicine (that winds her up instead of knocking her out).

Every five minutes “Sunshine, take a sip, Sunshine, take a bite”. I foresee it will be a long, long, long day.

Oh and its Halloween. Her school has “Dress up as your favorite book character day” instead of just regular costumes. She was going as Pinkalicious.

Pinkalicious

I worked really hard to find the parts of a costume for this. Oh well. And she was supposed to be Tinkerbell tonight for Trick or Treat. She may get to go to a few houses in my parents neighborhood, but I think she might be handing out candy instead. She can’t eat any of the candy anyway, unless I melt it down for her.

I’m really trying to stay positive. I just feel awful, the pain and a budding migraine. And I feel for my daughter, as I have had my tonsils out and it sucks. But I understood what I needed to do to stay out of the hospital. Sunshine really doesn’t. So I have to sit here, despite my own issues, and argue with her over every bite, every sip.

Halloween used to be a big deal to me.  I used to love dressing up, even as an adult.  Just something little, maybe butterfly wings or a tiara.  I do still have angel wings from last year that I may wear tonight.  I might drag out my wedding dress (it doesn’t look like a traditional wedding dress, it was custom made) and pair it with the angel wings.

Like I’ve said in previous posts, I missed out on my Halloween tradition of going downtown to participate in the annual “marching of the  freaks” that happens in Austin every year.  I love people watching.  I do that even without Halloween.  But I totally enjoy seeing everyone’s costumes.  And being a college town, there is some real creativity out there.

So here’s to hoping this day gets better.  Its supposed to be beautiful weather.  Birds are singing.  I get to spend more time with Sunshine (even if most of it will be coaxing her to drink and eat).  And I made amazing cookies this week.

I hope I don’t eat them all 🙂

 

Advertisement

Sunshine the social butterfly

Sunshine

Sunshine went back to school today. She begged to go back to school because today is library day and she gets to pick out a new book. That’s my girl.

Her school encourages parents to come and visit for lunch. So I brought lunch to her today. And my child is ever the social butterfly. With a bit of class clown mixed in for good measure.

I was trying to get her to eat and drink, but she was waving and calling out to her friends. Of all grades. I saw her calling out to a girl who was much older than her, I asked her “how do you know her?” She shrugged, “she’s my friend”.

She went up to take her trash to the trash can, took the child 5 minutes as she was stopped continuously, “Hey Sunshine, make me laugh!”, “Sunshine, show me that face you made again!” “Hi Sunshine!”. She was hi-fiving people, doing secret handshakes, hugging people. Wow.

Sunshine did not inherit this gregarious behavior from myself nor from her sperm donor. Perhaps from her Uncle (my brother) who was ever the class clown and Mr. Popularity. I was shy and very quiet in crowds. I came out of my shell with extremely close friends and I can be that way even today. Her sperm donor (I will not dignify him with the title of “father” at this point, that’s another post for another day) was extremely shy as a child and “angry quiet” as an adult.

In terms of modeling behavior, her grandma is extremely outgoing. Her bonus daddy can be outgoing as well.  He is also hilarious and attempts to be a comedian, although most of his comedy is rated R.

But Sunshine is Sunshine, it doesn’t have to be inherited or modeled.  Its just who she is.  And I love it.  I enjoy watching her interact with other children.  And she is friends with everyone.  Autistic children, biracial children, older children, younger children, children that don’t speak English (that is interesting to watch), boys, girls, it doesn’t matter.  If they want to play and they are nice, she will be their friend.

I am so proud of her for that.  We have never had any prejudices in this household or in my parent’s house.  She does recognize that my skin is darker than hers, and that my father’s skin is darker than everyone’s, but she has never said anything about it being bad or that we are inferior.  That is taught, not inherit in DNA.

Again, Sunshine is the shining beacon in my life.  I am so blessed to be her mother.  I continually say, especially in light of the anger I have toward her sperm donor, that the best thing that could have come of that marriage is her.  I would do it all over again just to create her.

I am so glad that she is providing Sunshine in the lives of others.  She has the ability to bring a smile to the face of everyone she meets.  That warms my soul.  I am so blessed to be her mother.

That is my positive thought…nearly always…my Sunshine.

FRANKENSTORM!!

It’s coming for you!!

As I write this, I’m looking out the window at gorgeous weather. Sunshine, 70s and a light breeze. Will be in the low 80s the rest of the week. So obviously I’m not in the path of Hurricane Sandy.

I grew up in the northeast, Pgh to be exact, and I have tons of friends and family in the area. My bonus child and newly minted in laws and extended family live in Delaware. So I am keeping an eye on this storm.

I’m mainly concerned about my bonus child. His mother isn’t the brightest crayon in the box, and tends to panic or might get caught up in watching movies all day and not heed any warnings. So a bit of anxiety here for my husband and I. We call my bonus child every so often for updates.

I remember blizzards when I was a kid. 1993 I had a sleepover during that major blizzard. My parents were very concerned that 10 little girls were snowed in with them. But their determination (and a 4×4 truck) ensured that everyone made it back home that day.

I don’t miss the weather in the northeast.  At all.  I don’t miss the cold, the rain, the snow, the sleet, the ice.  Nor the possibility of things like this happening.

Yes, Texas has its fair share of crappy weather.  More of the “sudden” variety: tornadoes, severe thunderstorms, hail the size of grapefruit, flash flooding, wild fires.  It has snowed twice since I moved here.  Both times it was less than an inch, and it melted in one hour.  Occasionally, a hurricane blows through, and where I live in central Texas, we only get the rain (and the aforementioned flooding).

I’m watching CNN.  Right now, they are covering the fact that crane broke on a skyscraper in Manhattan.  Ok, we get it, hurricane force winds will blow things over.  A reporter was in Battery Park.  Morons were jogging.  And to New Jersey.  People had their kids out on the boardwalk, waving to the camera, “hey, look at us!! we are stupid and have no regard for our life or the lives of our children!!”  The anchor just asked a reporter who is in the middle of an intersection in Atlantic City “is that water you are standing in salt water or fresh water?” Did he want him to taste it?  The news cracks me up.  The only good thing about this storm is that it is sparing me from election coverage 24/7.

I should switch it to Fox News.  I’m sure they’ve declared the apocalypse by now.  Or have found some way to blame it on Obama.

I hope all my friends and family in the path of the storm remain safe and damage is minimal.

From what I hear, the grocery stores were out of toilet paper, bread and milk last week 🙂

 

An unplanned trip down memory lane

I just got word tonight (via facebook, of course) that a friend of mine from high school passed away.  I haven’t actually shared spoken words with her since high school, or actually seen her since graduation, as she moved out of the area way before I did, but we caught up a few times via the internet.  She had chronic health problems since she was a child (juvenile diabetes) and was extremely brittle (that is a term that means uncontrolled with her blood sugars).  Even throughout high school she was in and out of the hospitals with blood sugar issues and complications.  I know in the past few years she had been found passed out in public and spent time in the ICU.  And I know as a nurse that diabetes, especially her type, is not kind to the body.  I’m not sure what happened this time, but I’m glad she is no longer suffering.

She used to pass out those glucose tabs (that they give to diabetics) out like candy during class.  She was the first diabetic I ever met, and through her I found out I wasn’t squeamish around needles (that helps when your future occupation requires poking people with needles).  I can still see her handwriting in my mind.  She had this really loopy handwriting,  mainly all curves.  She was smart as hell and wanted to be a biomedical engineer, but I’m guessing her health got in the way.  She went through a lot more in her life than just the diabetes, and I hope she has found peace.

She isn’t the first classmate of mine to pass away, but the first one whom I would actually go to the funeral, if I was living in pgh.  And the first that isn’t drug related or a suicide.  Or a shooting.  Or a drug related shooting.  Or an accidental drug related quasi suicide.  I graduated in 2000.

This makes me think about high school, as I’m sure everyone does from time to time.  Those four years for me, weren’t so great and lasted so long in my mind.  Now four years go by in a nanosecond.

Thanks to the wonder of the internet (and Mr. Zuckerberg) I am in nearly daily or at least weekly contact with a good portion of the majority of those that shared my high school.  I have found out that at least 2 boys silently pined away for me and found the courage to tell me 10+ years after the fact (I honestly thought one hated me because he actually used racial slurs to tease me.  Turns out he didn’t know it was a racial slur when he said it in the 6th grade).  And many people act like we were best friends in high school, even though, if this were 13 years ago, they wouldn’t even look at me let alone acknowledge my existence.

I dealt with a lot of negative attention in middle and high school due to my ethnicity and the lack of others like me in that area.  I would have people come up to me and ask me “well, what are you?” and I would reply “human, what are you?” And that continued into nursing school and into my career.  Grown adults would ask me if I was Hawaiian or Samoan, or biracial (technically, yes, but not what they were thinking).  They never thought to ask if I was Latina.

Maybe that’s why I haven’t been back in three years.  I did not make my 10 year reunion, no cash, and I’m not sure I wanted to go.  I would have seen the girl that passed away last night at the reunion.  Maybe I’ll feel better about it at the 20th.  I don’t think it is me not letting go of the past, its more about me not justifying the airfare to see people who treated me poorly.

Everyone gets made fun of as a kid.  Make fun of me because I said or did something embarassing in class.  Make fun of me because I’m a klutz.  Make fun of me because I’m a bookworm or because I can’t kick the kickball in gym class.  Don’t make fun of my ethnicity.  I can never, ever change it, its who I will always be, and it is something I will pass on to my children.

That’s a road down memory lane I was not planning on taking.  Cleansing breaths.

I hope one day I can think about that time in my life and not have painful memories.  Maybe one day.

I know my friend didn’t have such an easy time of it either.  Rest easy MB.

Resume your regularly scheduled poison…

So I started back on the poison this past weekend.  I was feeling pretty awful toward Wednesday of last week, so I didn’t have that almost normal feeling and then that sensation of being brought down by the methotrexate on Friday.

Mr. Yuk

I still felt the usual side effects, concrete in my limbs, inability to freely walk around, nausea. When I feel weighted down like that I feel so frustrated.  I have the tendency to chant to myself “I hate this! I hate this! I hate this!”.  I despise asking for help to get up from a position on the couch or bed.  Or for asking my husband to help me get something to drink or a pillow or a blanket.  He is always more than happy to help, he doesn’t guilt me, doesn’t make it seem like I am asking too much or that I’m lazy, he is wonderful.  Its just that I feel helpless and dependent, and I do not like feeling that way.

So I try to plan my small trips from the bedroom to the living room as best I can, i.e. bringing what I need in one trip.  And I live in a really small apartment (800-900 sq feet).  I just don’t have the strength or dexterity to make multiple trips.  So I try and bring my favorite pillow, water cup, phone, it’s charger, Kindle (if needed, it’s charger) and any pain medication I need all in one trip.  Yeah, that works the morning after chemo.

Preparing food is fun too.  Never thought I’d be so happy to have such a small kitchen.  Not enough room to do serious damage if you can get from the stove to the sink to the fridge by barely turning around.

 

I do feel that I stumble around like Frankenstein.  I am slow to get up, I am slow when I do get up, and my movements lack fluidity.

I should have actually dressed up this year..Bride of Frankenstein or zombie.  No one would have noticed.

One thing I do regret in all of this is having to miss things I used to love because I can no longer do them.  One event occurred this past weekend.  My husband and I loved dressing up for Halloween and going out with the crazy masses to downtown Austin.  With the fibro alone it was iffy, but I survived (one year in heels).  This year, no way in hell.  Not with the pain, fatigue and poison coursing through my veins.  I doubt I will get to take my daughter Trick or Treating.  My parents will get that honor.  I would last half a block.

I do realize how lucky I am.  It is just when I have recently taken the methotrexate it is hard for me to see positive because I feel so awful.  I literally can’t move.  But by tomorrow or Tuesday I’ll feel much better.  And the cycle begins again next Friday.  Or Saturday as we have another wedding to go to.

I like weddings.  That’s positive.

Sunshine meets the medical system

My daughter, who is relatively healthy as a child, had her first run-in with the medical community this week.

In her first year of life, she was a frequent visitor to medical facilities, but of course she has no memory.  I often thought, during those turbulent 365 days, that she was trying to see how stressed Mommy could get before she lost her mind.  And let me note here that I did not have the unending support of her father and finally left when Sunshine was 2 1/2 years old.

As an infant she spent almost a week in the hospital for severe gastritis.  I literally slept on the floor in her room.  She was three months old.  She also found the time to contract salmonella, roseola, develop a nasty allergy to penicillin, have 3 ear infections and the entire time she was colicky and had severe gastric reflux.

But after that first year, she was remarkably healthy.

Except for the ears and throat.

So she had her tonsils out and ear tubes in this past week.  Of course she doesn’t remember her infancy, so all the hospital stuff was new to her.  First, she wanted to know why she was wearing a tag with her name on it.  She was ok with the nurse taking her vital signs, because they do it at the doctor’s office.  I had to coax her into the gown.  I had to explain over and over to her why she needed her tonsils out.  Then I had to explain why I was drawing with marker on her face (you have to mark which part of the body is being operated on) .  And who the people were who were coming in to talk to me about the pending surgery.  And then came the “happy juice”.

It totally freaks me out to see my five year old daughter hopped up on Versed.  Versed is a medication that they use prior to surgery or during procedures like a colonoscopy to relax the patient.  It also has the effect of amnesia.  Patients become really loopy.  And that is what happened to Sunshine.  Within minutes of taking the medication, her eyes glazed over and she started giggling.  Slurring her speech.  Pointing to my  husband and saying “you’re funny”.  Totally unsettled me.

And then they took her to surgery.  Her right ear was grossly infected and they had to suction out a good amount of pus.  Her tonsils were very infected as well.  I should mention that Sunshine has a high tolerance for pain.  By the time she is complaining of pain, both of her ears are badly infected.  Or the strep rash will appear BEFORE she will complain of throat pain.  That is just how she is.  Probably gets it from me.

But the surgery was a success.

Then the nightmare of waking her up from anesthesia began.

When they brought me back, she was crying.  She didn’t know where she was, what happened and her throat was hurting. So I just climbed into bed with her and held her and rubbed her head.  They gave her some Fentanyl and she calmed down.  They had to observe her for two hours post op, so we took a nap.

She slept a little when we brought her home.  Then she wanted to eat.  And the repeated explanations as to why she can’t eat cookies began.  And still continue to this day.  I had told her prior to surgery that she would not be able to eat regular food, but she is only 5.  She even made her “special food” with me the day before.

Regardless, she began sucking down the jello, pudding and ice cream.  Like she hadn’t seen food in years.  That makes me question the recent battles over food in the past week.  Was she hurting during that time and didn’t tell me?

So I gave her a dose of liquid hydrocodone/tylenol toward evening.  Even if she wasn’t telling me she was in pain, I’m a nurse, I know she has to be having some pain.  And I learned that narcotics have the opposite effect on her as it does on me.  Whereas I get sleepy and usually go to sleep for a few hours, even after a Tramadol, Sunshine bounces off the wall.  She was off to the races.  Chatting a mile a minute.  “Mama, look here, Mama, look at me!!”.  Literally running around the apartment.  The child that had surgery THAT MORNING was running around the apartment.

And the next morning I learned that steroids have the exact opposite effect on her that it does me.  I gave her the dose ordered by her doctor (15mg) and she promptly fell asleep.  Steroids keep me awake.

She finally said today that she isn’t mad at me anymore.  All day Thursday and Friday she was shooting me dirty looks and crossing her arms across her chest.  She would say “I’m angry at you Mama, you made them take my tonsils out and now I can’t eat a cookie”.  Even if I explained it to her, she is only five.  I understand that.

But she is now visiting my parents.  Two and a half full days of medications, a five year old running amok, constantly feeding, watching, lecturing, her is exhausting.  And I took my chemo last night.  The break is very welcomed.

I am so thankful that she came through with flying colors.  At least one of us is on the upswing health wise 🙂 .

Baby fever

I know this may sound selfish to people who are struggling to have ONE child, and here I am blessed with a daughter of my own and a wonderful bonus child.

If I wasn’t sick, our plan was to start addressing our mutual fertility issues, since we are now a legally married couple.  Not that we would have minded if I would have gotten pregnant during the last three years we have been together.

We have not been using any method of birth control for the past 2 1/2 years and I have not gotten pregnant.  I guess that meets the criteria of infertility.

Since I have given birth to my daughter, I have had an IUD surgically removed from my uterus due to it becoming embedded.  That sucked.  My ex husband also left me with some parting gifts (the curable kind).  So my uterus is pretty well scarred.

My husband always thought that he couldn’t have children at all, due to several surgeries he  had to his nether regions as a child.  His unplanned arrival of his son while he was in college completely disproved that theory.

But our plan was to attempt to have a child together around this time in our life.  One that was part of both of us.  One that had nothing to do with our ex spouses.

Every time I think about my pregnancy with my daughter it immediately brings up painful memories.  Despite what my ex husband said, he clearly did not want a child.  I went as far as to mark the calendar with my fertile days and flat out told him ‘if we have sex on the red days, we are likely to conceive a child’.  And that is exactly what happened.

And I was alone most of my pregnancy.  I took my grandma to my sonogram.  My friends helped me pick out my baby registry items.  My mom took me to the hospital when I went into labor, he eventually showed up.  My mom stayed the first night in the hospital with me after my daughter was born.  And for most of my daughter’s life, before I left, I was a de facto single mother, although I was  married and he lived in the house.

My husband has bad memories of his ex wife’s pregnancy and first days of his son’s life.

I wanted a chance to experience what it is like to have a loving husband be excited about a pregnancy, to treat me the way a pregnant woman should be treated.  To go with me to all the appointments, to have late night talks about the life inside me.  And after the baby is born, to be an equal partner in raising a child.  Like it is now with my daughter.

My husband is amazing with my daughter.  He treats her like his own, as I do to his son.  My ex husband is currently MIA at the moment.  No contact in 3+ months.  My husband has stepped up, he is her dad.  They have a bond.

I am so lucky to have such a wonderful husband who is a wonderful father.  I want to make more children with him.

It is unlikely that I can have more children.  I haven’t been told that outright by any doctor, but I just feel it in my soul.  The odds are stacked against it.  Given the fact that we have been not using anything for 2+ years and nothing happened is a sign that nothing is going to happen.  My health right now is kind of the focus.  I can’t have a child when I am taking chemotherapy.  I take a toxic soup of medications, each one of them I would have to stop taking months before even considering getting pregnant.  Hell, my body can’t handle going grocery shopping, how could it handle making another person? Sigh.

What brought this up??

All of my friends are in baby mode.  Granted, I had my child way before any of them were even married.  But some of them are on their first and second babies.  Everyone is pregnant.  My best friend texted me this morning and announced she is having a girl.  My cousin’s wife is pregnant with a girl, and I’m helping with the baby shower.  Baby is on the brain.

Even my daughter put her order in for a baby brother.  A week or so ago she said “Mommy, I want a baby brother so I can play with him”.  Her friend has a baby brother.  She refers to him as “Dom’s baby”, and not the baby’s actual name.  “Mama, Dom’s baby was crawling today!”.  Sigh.

But again, I look around and count my blessings.  I have a relatively healthy child (Sunshine is recovering well from her tonsillectomy, that’s another post).  She is intelligent, well-mannered, a joy to be around.  I have a wonderful bonus child.  He is considerate, polite, very smart.  We only get him three months out of the year.  I have a husband who loves me despite my issues, who is accepting of the fact that we might not be able to create our own children.

So I will share in my friend’s joy, wish them well, and be happy that my child can potty on her own, feeds herself, and sleeps through the night.

Make way for a new patient!!

Tomorrow Sunshine (my daughter) gets her tonsils and adenoids out and ear tubes put in.

I knew when she was very young that this was was probable.  I come from a long long line of people with ear, nose, and throat problems.  I took one look at the size of those tonsils and knew they would be trouble.

I had two rounds with ear tubes when I was young.  I continue to have ear infections into adulthood.  Last year my right ear drum ruptured.  Not a fun experience.  I still have hearing damage on the right side.  So I’m not ignoring you.  I really can’t hear you.

I had my tonsils out when I was 21.  That is such a painful experience when you are older.  I literally had a straw in the bottle of Roxicet because it hurt so much.  I was thrilled when Sunshine’s pediatrician finally said that she had reached a point with all the ear infections and throat infections that she now needed to see a specialist.  And like I suspected, the ENT recommended surgery.

I’m very honest with my child.  I tell her what is going to happen, how it is going to happen, and what to expect afterward.  I don’t lie, I don’t sugarcoat.  I do use correct anatomical terms (for EVERYTHING) and I speak to her as a valued member of the family.  She helped me make pudding and jello today in anticipation of her throat feeling “sore” tomorrow and the day after.

I’m actually nervous.  This is my kid.  My baby.  When she was a few months old she was in the hospital with severe gastritis.  She’s had salmonella.  She was colicky.  A projectile vomiter until she was a year old.  Even now its hard to get her to eat.

And she has an amazingly high threshold for pain.  When she was at her six month check up, the doc looked in her ears and asked if she was tugging on them or crying or running a fever.  Nope, not at all.  Child had a double ear infection.  Since then she has to be REALLY SUPER SICK before she will complain.  I now know that when she starts complaining of pain or when finally gets lethargic, she is at least two days into an infection. So I’m just nervous.

As for me?  I go back on the poison as of Friday.  But I honestly don’t know which is worse.  I’m at day 11 past my last dose of methotrexate.  It has been explained to me that by now the effects of the methotrexate are out of my system and the massive fatigue and pain I’m experiencing now are “pure disease related”.  I slept 11 hours last night and another 3 after putting Sunshine on the bus this morning.  My pain is definitely worse in my joints, mainly hip, knees and elbows.  I have next to no appetite.  That can be a good thing, however.

I have an appointment for a second opinion two weeks from now at my aunt’s rheumatologist.  My dad has been getting on me about a second opinion from this doc for quite awhile.  At first it wasn’t clear if this doc was even going to see me, as he usually doesn’t see patient’s with sarcoid.  But since I don’t have the “definitive diagnosis” (the biopsy), he’s willing to take a look.

I’m hopeful everything goes well with Sunshine.  And that my husband doesn’t go bonkers this weekend trying to put up with the two of us.  I have tons of jello and pudding and a little bit of ice cream waiting for her.  And it looks like I’ll be enduring more Spongebob, but I’ll try to persuade her to watch more Barbie videos (did I actually just type that?).

Just another mommy adventure.

We Are Family

I didn’t always have it this good.

Both of my parents are highly educated nurses with over half a century of experience in the field between them.  They work in nursing education at the present moment.  You would expect empathy and understanding from parents that do it for a living, but growing up with nurses for parents usually yields the exact opposite.

As a child, unless I was turning blue or was bleeding profusely, it didn’t elicit any kind of alarm.  I had to have a fever greater than 101 or be projectile vomiting to stay home from school.  But on the other hand, I always had cool band-aids (they usually indulged me and used something from the hospital like butterfly sutures or tegaderm) and I practically grew up walking the halls at a major university medical center.  By the time I was a teenager, I had met extremely well known and well accomplished transplant surgeons, observed some procedures, visited research facilities, and knew I was destined to follow in my parent’s footsteps.

Back to my issues.  I have always had something medical going on with me.  I developed severe migraines at puberty (I think I had some as a child, I remember having really bad headaches).  I had a severe case of mono at 14.  And that is what seemed to me to kick off the immune issues.  While working in the ICU I contracted a hospital acquired infection.  I was so sick.  But it didn’t seem to faze my parents.  Not that they weren’t empathetic, its more like their attitude was nonchalant.

And then I was diagnosed with fibromyalgia while I was battling the infection.  I’m pretty sure my parents didn’t believe it was a real condition until recently.  I heard tirades about laziness, needing to “put my big girl panties on and deal with it”, “pulling [myself] up by the boot straps”.  I was so exhausted from the infection, my muscles ached, I was losing weight, my husband at the time was less than supportive. And my parents. who were nurses, thought I was faking.

I’m not sure if it is because there is literally no proof of illness, and the diagnosis is made by exclusion, but their attitude was less than comforting.

Fast forward to this illness.

I’m not sure if it is because it is something that is provable with pictures and blood results, but my parents are much more empathetic this time around.

Because I need to go to the eye doctor so much and require a driver, both of my parents (and my husband) have been to the doctor’s appointments with me.  They hear the prognosis, see the imaging and can ask their questions about my treatment.  I even make sure they come to the appointments that I could drive myself to, mainly so I don’t forget anything.

My parents call and check on me every day, they have been helpful financially and in caring for my daughter.  Occasionally I’ll hear a comment about “pushing through the fatigue/pain”.  They joke about my husband leaving me (which I hate).  But overall I feel like I have the support of my parents, which I feel I did not get during my first battle with severe illness.

I feel like I have the support of my aunts, uncles and cousins, which I most definitely did not have in pgh.  That is a story for another day.

And my husband.  We have some issues, but I let him read this blog yesterday, and he seems to understand more.  I write about this better than I can express it verbally.  He thanked me for letting him in to what it is like.

Unless someone goes through something like a chronic illness, in which they are experiencing symptoms every single day for a prolonged period of time, they honestly can’t understand it.  It is truly mindboggling.  The planning, the explaining, the fear (of the unexpected), the doctor’s appointments, the medications, and around and around it goes.

I am truly grateful to have the support and love of my family this time around.  It may have taken awhile, but I would rather have it now then not at all.

Attempting normalcy

I was spared the poison (methotrexate) this weekend because my immune system does not appear to be doing its job, as evidenced by a rash on my torso.  I thought without the side effects caused by the chemo, I could attempt to do normal things this weekend.

WRONG!!

I have also been battling the cold that never ends.  And with above stated immune issues, my attempts at a normal weekend were thwarted.

My dad knows how I feel about my appearance these days.  I have gained weight, I have the typical steroid “moon face”, and I stumble about like Frankenstein half the time.  Not appealing when you are a newlywed (or any time actually).  My husband is amazing, but I still feel very self conscious.  My dad paid for my to go to my favorite hair stylist, the one who turned me into the most beautiful bride just a few months ago, for a “tune up”.  I cut my hair shorter than I normally would have just to make it one less thing to worry about.  It’s amazing how something as simple as a new haircut and style (and a wax of the unibrow) can make one feel so much better.

After the haircut, my husband and I went “little shopping”, that usually means less than an hour and for the essentials.  We have had to cut way back on what we spend, and we are working on scrounging up money for next month’s rent.  So our shopping expenditures were curtailed to the bare essentials.

Those two errands, three to four hours out of the house, I was exhausted.  Come home and lay down and don’t move.

Yesterday, laundry day.  We all finally got to the point where we HAD to do laundry.  Meaning we were all out of clean clothes.  Ick.  So now ALL the laundry in the house is done.  It is just not folded.  As of right now it is sitting on a table in my room.  Piled up and awaiting my attention.  Shit.

And the inevitable children’s birthday party.  I firmly believe that all children’s birthday parties during football season should be held on a Saturday or not at all.  Which reminds me..

When I was pregnant, I was sternly reminded that if I went into labor on a Steeler Sunday, I could expect to wait until the game was over to find transport to the hospital.  This from my parents and my husband at the time.  I knew they were joking. But I happened to go into labor on a Steeler THURSDAY, verses Cleveland no less, and was told to push her out before kick off.  I complied and my room emptied by gametime.  I watched the game with the newest member of the Steeler nation bundled next to me.

So back to the children’s birthday party.  My daughter was invited and of course wanted to go.  It was here in our apartment complex so no problem.  But I know how I look.  There are a few moms in the complex that know I have health issues.  This family wasn’t one of them.  But I took her anyway.  And stayed 3 hours.  The walk there (up to the pool area) is maybe two blocks in distance.  I was having difficulty with it.  My daughter had a blast, and I socialized with the neighbors.

And when I got home, I completely crashed.  Lights out.  So glad my husband was here.  I was knocked out for 3 hours.

I woke up in pain.  Joints, especially elbows.  I’m not sure why the pain is getting worse, I just know that it is.  Especially in my hips, knees, elbows and fingers.  Sometimes it feels like someone is smashing me with a hammer.

I try not to take pain pills.  I start with Tylenol and if that doesn’t work I have Tramadol.  But rarely to I use that.  I also use non-medicinal methods for pain.  Biofreeze helps, especially the roll on version.  Heat.  Meditation.  I use distraction a lot to take my mind off the pain (I read 2-3 books per week).

Because I slept so much during the day, I couldn’t fall asleep last night.  Read until 4 am.  It was a good book too.

So now my sleep schedule is screwy.  I’m heading back to bed.

I am trying so hard to affect a normal life right now.  Its just difficult when I can’t predict what my body will do.  I can’t predict the pain, the exhaustion.  I am told to try and push my limits.  I do that and I end up past the point of exhaustion.

Today is another day.  I will try again.  First I need more sleep.