How are you? And other useless questions…

I started down this rabbit hole again when Facebook asked me a similar question…”what did you do this weekend?”

Very quickly I thought to myself “the same thing I do every weekend: inject poison in an attempt to prevent blindness”.

I was really proud of myself for thinking of something somewhat witty so quickly.

I didn’t post it, because I do not want to be the person that posts to FB with every little complaint and worry.

That is what this blog is for.

But I do tend to use FB as a soapbox sometimes.  If it isn’t about chronic illness, its about PTSD, sexual assault, domestic violence, the nursing profession and very seldom, my political leanings.

I separated out my other writings and book pages as to not inundate my poor friends and family with upwards of 10 posts per day.

But after days like today, after a month like this, I just want to post something about what is REALLY going on when I see the lovely questions posed in my status bar posed by Mr. Zuckerberg (or at least, his employees).

Here are some examples of the things I felt like posting (but never did):

How are you? In pain, nauseous, itchy, cranky, and tired.  All at once. Oh and there are permanent black spots in my vision.

How was your day?  Let’s see, I had horrible, horrible nightmares and woke up screaming.  When I woke up after hours of torture, I could barely move.  When I did finally start moving, I had pain somewhere in my body.  I was dizzy and literally fell INTO the bathroom.  Doing my morning blood pressure yielded less than stellar results.  I tried to eat something healthy and wholesome for breakfast, but the carb craving kicked in and I had Froot Loops again (two bowls). I had to take a ton of medication that doesn’t taste good even in pill form.  Then I went to the doctors, was told that I’m not getting better, I might actually be getting worse, and received an injection TO MY EYE.  It soon began to bleed and cause a lovely shadow to the periphery of my vision.  The doctor promises another injection to the other eye “if things don’t improve”.  I’m ecstatic.

What are you up to?  I’m trying to distract myself from the relentless fatigue and pain.  So I’m just ducky.

What are you looking forward to tomorrow?  Being alone because these medications make me so damn irritable, I can’t stand to hear another mammal breathe (this goes for the cat too).

But other than pointing out how difficult my current situation is, Facebook actually has some redeeming qualities.

1) It keeps me in touch with friends and family 1500 miles away.  After I picked up and moved to Texas four years ago, I have still been able to maintain a fairly steady presence in the life of my best friend.  So much so that she came to Texas for my wedding, and I was the first person she called with news of the birth of her children.  Although we would still be friends without it, Facebook has managed to keep us in touch with each other after being busy with various life events and marriage and children.

2)  I love to post pics of Sunshine.  Not to show off, but because she brings me so much joy.  I just love sharing her smile.  And if it can cheer ME up, perhaps it can cheer up others.  Also, I love seeing pics of my friend’s kids and how they are growing (due to the whole 1500 miles thing).

I don’t post pics here and try to remain at least somewhat anonymous because of the custody issues with her sperm donor.  I know that he has stated he wants nothing to do with her, but he is extremely unstable, and I don’t want to invite trouble, should he stumble upon this blog and tie it to Sunshine.

3)  If it wasn’t for Facebook, I wouldn’t know the latest trends and fads!  i would think that the Harlem Shake is a type of dessert and Gangnam Style is the name of a clothing line for gang members.

4) It really does make your birthday that much sweeter when 73 people take time to type out  a message to wish you a happy birthday (really, it does).

5) Humor.  FB has given me hours of amusement.  From the funny videos that people post to the little signs and the stories, it truly helps.  And because it is all on one site, I don’t have to go to another website to find something to make me laugh.

6) And most of all, I have found two groups that truly make me feel that I am not alone in all of this.  I have belonged to a group about moms that have fibro for a number of years.  Recently the moderator made it a closed group, so if I truly want to complain, I don’t have to worry about MY mom reading it. And since FB changes features regularly, I never know when I am safe to post something caustic.

I also found a group for pars planitis, and the fact that there are only 37 members worldwide just shows how this is a rare disorder.  Granted, they are probably only the 37 people that speak English and have pars planitis, but given that 1 out of 12 people on this earth have a FB page, and there are hundreds of millions of people in the English speaking world, that is still a small number of people.

Yes, I get alot of support on wordpress, but sometimes I just want to quickly vent about something that is going on right that second, and I don’t want to log into WP to post it (I think it should be reserved for longer rants, like this one).

I can also access FB on my phone and Kindle.  I can do that with WP too, but for some reason it isn’t updating, and I haven’t gotten around to uninstalling it and reinstalling it.

Also, reading the every day complaints of others helps, especially when I have the same symptom or issue with a medication.  It helps me realize that there are others struggling with the exact, same things.

And no one can truly understand what it is like to take a needle to the eye unless they have actually experienced it.

So that is my latest Facebook rant.  I feel better after posting it.

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Emotional exhaustion

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Some people aren’t aware that intensely emotional situations can completely drain someone physically.

I learned from a wonderful doctor years and years ago that for me, there is a very limited amount of “emotional energy” in my tank.  And that I can choose what situations to invest that emotional energy on.

This was prior to the fibro diagnosis, when I was relatively healthy (with only the migraines).

Since that time, this idea of emotional energy has proven true time and time again.

And today it was extremely prevalent.

I’m on E about now.  Dealing with the emotional side of this never-ending illness, hearing my husband and my mom talk about me like I am a child, difficulty with Sunshine and her issues with her bio dad, all of this has just emptied the tank.

I have been reluctant to apply for disability.  I know I will get denied the first one or two times based on my age and the nebulous nature of my condition.  I know that I cannot do any sort of work right now that requires thinking, moving, or talking (because I sound out of it all the time).  But I have been holding out hope that I will wake up tomorrow completely healthy.  Or healthier.

That isn’t happening.  In fact, its going the other way.  But part of me doesn’t view myself as disabled.

I continue to look through want-ads, hoping to find a job that can accompany the limited hours I could work, the unpredictable nature of my symptoms, the brain fog from the meds and the exhaustion from all of it.

So far, no dice.

After a particularly emotional exchange with my mother, with the words “we will not help you anymore until you apply for disability” uttered, I launched an online application for disability.

Apparently doing even that from the comfort of my couch is kind of like a full time job.

I was finally persuaded to finish halfway through and save it for another day when Sunshine had a meltdown.

Sunshine’s sperm donor has elected to officially sever his ties with her.  In a very nasty Facebook message, he said extremely vile things that only reinforced the reasons why I left him.

Although this is generally a positive thing, from my perspective, because he can no longer play yo-yo dad, Sunshine sees it completely different.

She just wants to know why he doesn’t want to talk to her.  She thinks its her fault.  She is grieving the IDEA of a father that she never had.

The child has only seen this man four times in four years.  He has disappeared and reappeared in her life so often, only to disappear again.  I think that when she says she misses him, she misses the IDEA of someone who helped create her and who is actively participating in her life.

We have had dozens of conversations with her reiterating that it is not her fault.  That even though my husband didn’t make her, he loves her just as much as he loves his own child.  My husband does special activities with her, Daddy-Daughter dances, taking her to the park.  This week they have a Daddy-daughter day with the Girl Scouts.  But for someone reason there is this hole inside of her.

It literally kills me to see the pain in her eyes.  Literally makes me choke up.  I have no idea how someone can just do this to their child.  I am reasonably sure that he is mentally ill, and his recent behavior is evidence of that.  But a kindergartner doesn’t understand that.

Her world is so small and sheltered.  She has never had to endure anything this difficult in her young life.   I am trying to give her the tools to express her emotions, but much of the time she just collapses into sobs.

I spent a good part of this afternoon just holding her in the rocking chair I used to rock her in when she was a baby.

Despite his treatment of her, I refuse to reduce myself to name-calling, to trashing him to her.  In private, that is another matter.  There will be a time when I can be candid about the reasons I left and my theories on why he is doing this, but not now.

I think that is what makes this so difficult.  I spent so much time encouraging a relationship between them after I left because I believed I was doing the right thing.  She was a toddler when I left and she has no recollection of ever living with him as a full time parent.

Physically all of this has had the cumulative effect of intense fatigue.  I mean, the-limbs-are-very-heavy, difficult to do any sort of movement, forget about recalling your own name type of fatigue.

And I still have to do the chemo tomorrow night.

Any sort of positive thoughts, prayer, chanting, burning of candles is appreciated.  I need all the help I can get right now..

Let’s play, Guess the Ailment!!

This is that game show you all know and love in which you guess what could be causing the current symptoms.

Today’s mystery:  why is Mommabel struggling to get out of bed all of a sudden?  Why is she sleeping 12-16 hours per day and waking up EXHAUSTED?  Why is she feeling this awful 5 days post methotrexate dose?

Could it be the fibromyalgia?

How about the autoimmune disease (pars planitis)?

The fairly recent initiation of blood pressure medications (two weeks ago)?

Or a side effect of the several medications she continually takes to keep from going blind?

You have 30 seconds……go!!

 

Thank you for playing “Guess the Ailment”.

Be sure to tune in next time where we discuss Mommabel’s pain complaints and once again play “Guess the Ailment”!!

So I was right..

Yes, my eyes are a little bit worse.  I was right with my earlier instincts.

Saw the eye doctor, he did another steroid injection directly into my left eye.  This one was different ..he put it in a different location than the two injections prior.

This one required him to use that dreaded clamp to keep my eye open, wipe down the surface of my eye with betadine, and inject twice as much steroid as he did last time.

My right eye, which was previously clear of inflammation in January, is now inflamed.  It may need an injection to that eye in two weeks.

No matter how much numbing drops he put in, it HURT.  I mean, took my breath away hurt.  And since he put it in another location, not the back of my eye, I was looking directly at the needle as it was coming toward my eye.

So now my eyeball is bleeding.  Which is expected (I freaked out the first time it happened).  The blood is surrounding my iris, and I can see a shadow at the top of my vision.

To add to the fun, I did my weekly methotrexate dose on Friday.  I felt like hell all day Friday and Saturday.

My husband even took Sunshine with him to his boxing class this past weekend.

Yesterday I felt ok.  I HAD to get up and help my husband with the laundry and the house.  I made cookies, I made dinner.

And now, I am completely wiped out.  I slept 16 hours so far.  I woke up, got Sunshine on the bus, then back to bed.

I am up now because Sunshine is getting off the bus in 20 minutes.  And my husband will be at work until 8:30 tonight.

I am incredibly thankful that it is beautiful outside today.  Sunshine should be out with her friends most of the evening.  And one of my friends is coming over for “Mommy-baby dinner” tonight.

She can help with dinner and keep an eye on Sunshine until my husband gets home.

I really can’t tolerate reading or typing too much.  So I’m going to end this here.  I’m just concerned. My bp is still going haywire, this eye is effed up, and I can barely move.

My goal this week is to get to yoga at least once.

Ick.

Ominous

My eyes are getting worse.  This isn’t just me thinking negatively, I have noticed a difference in the past week.

The first thing I noticed is my right eye getting blurry.  Like someone smeared something on my glasses.  This was surprising because my right eye is my “good” eye.

Then I started seeing new floaters in the right eye as well.  That eye is supposedly “clear”.  The floaters are more prominent and are always in my field of vision.

And then the reading.  I have had to enlarge the font on my kindle that I only get 20 words per page on average.

I can’t tell the difference between numbers at arms length.  Numbers 3, 6, and 8 look the same to me.  I really have to squint and pull the computer screen close in order to differentiate at times.

That is scary.

I’m not sure if I need a new prescription for my glasses (which I cannot afford) or if the eyes are truly worsening.

I have an appointment with the eye doctor today.  Hopefully he can put my mind at ease and tell me that things are clearing up.  But something tells me that this is not the case.

I truly hate this.  I hate not knowing.  I hate my meds, I hate what they have done to my body.  I hate the inability to do nearly EVERYTHING.  I hate that my body just will not cooperate.

Positive thinking:  as this is my birthday week, I have had a wonderful romantic dinner with my husband.  Tonight my mom is making my favorite foods for my “family birthday dinner”.

I know that it seems silly or trivial to be celebrating a birthday in the 30s, but I am grateful to be alive to celebrate another year of life.  Things could have gone so wrong at any point during this health adventure.  I am happy that I have stayed out of the hospital thus far.

So happy birthday to me!!

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 🙂

You know its progress when you can finally sit upright..

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Thank you for the well wishes.  This truly sucks.

But, in trying to remain positive, I will dwell on the fact that I can now sit upright for periods at a time without getting too dizzy and nauseous.

That, my friends, is progress.

The bp meds are completely draining me.  As if I’m not drained enough.  But today was less draining than yesterday.  If that makes sense at all.

I did spend most of the day sleeping, and i haven’t done that in awhile (two weeks? ha!)

I am still trying to hold up my share of the housework, and actually did the dishes last night without too much difficulty (if I lean against the counter, I can steady myself).

I have had a few near misses while furniture surfing.  But those incidents are diminishing.

And I stopped taking my blood pressure every five minutes.  Being a nurse can really cause some OCD when it comes to stuff like this.

And the headache from hell which first alerted me to this issue is slowly fading away.  I am still confused as to which is the best pain medication for this situation, because it does feel similar to a migraine, but not entirely migraine-ish.  And I can’t take both the tramadol and the Treximet at the same time (something to do with serotonin), so I end up just randomly picking and seeing if it works.  So far the Treximet is winning.

I try not to think of the internal damage caused by this lovely drug cocktail.  Again, the nursing thing.  I have said it numerous times on this blog.  Sometimes having an education in the health field is dangerous.

It is bad enough reading all the fantastic side effects associated with these medications, it is another to see them in living color throughout your career.

And sometimes my mind will enter the never ending loop of medicines.  Example:  ok, if I am taking the steroids for this long, my bones might be weaker, should I take a calcium supplement?  But with some of these autoimmune diseases, there is a risk of kidney stones, so I shouldn’t take the calcium.  The steroids can also cause diabetes, should I be taking my blood sugar?”

It truly can go on like this forever, given my rather large list of medications I now need to take.

Then there is the other way of thinking.  My husband’s friend works at a health store.  I have been in to see his boss several times over the past year as I was just feeling worse and worse but had nothing to actually “test” for yet.  She is a naturopath, and thinks I should be treating this completely through supplements and diet.

I can understand that approach.  Herbs and natural products were there centuries (more than a millennia?) before modern day pharmaceuticals.  But I’m actually scared to come off the medications that are keeping the inflammation to a lower level.

That’s enough for tonight.  Hoping I feel better tomorrow.

Under pressure

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I just can’t win. Yesterday (and most of the day before) were absolutely awful.

I was hit with one of the most intense headaches I have ever experienced. And this is very meaningful because I have had migraines for the past 17 years and have been to the ER plenty of times to deal with the pain.

This one was different. My migraines are usually left-sided. Its usually an intermittent to constant pain that I can identify pretty quickly and take the appropriate medication (Treximet). They haven’t been getting to the “point of no return” lately because I have a good supply of the meds right now and don’t feel I need to ration them.

Well, Tuesday, I was hit with a severe headache that I really couldn’t identify. The pain was across my forehead, down the middle of my skull (I call it a skunk headache) and then across the back of my head and neck. The pain came on quickly and was absolutely intense. I’m talking 9/10 on the pain scale. I was literally lying in bed, pulling my hair because that sort of distracted from the intense pain I was experiencing.

I did check my vitals (like any good nurse) and my bp was 150/100.

The pain was intense. I mean, teeth grinding, grab on to the closest thing and scream pain. I didn’t go to the ER because I have no health insurance and I’m already in over my head as far as medical bills go. I took the Treximet which helped, but not as quickly and not as completely.

I finally fell asleep (with a pillow over my head, vicks vapo rub coating my face and biofreeze coating my shoulders) around 8:30 p.m. I woke up at midnight, absolutely exhausted. But still in pain (it was about a 3 at that point). I again took my Treximet and went back to sleep.

I got up with Sunshine at 6 and still had the pain. My blood pressure was still high (112/98) so I did the entire routine over again. This time I could barely move. I mean, I was so dizzy that I had to “furniture surf” so I didn’t fall. I had nausea, I couldn’t think straight. But Sunshine got on that bus. She was clean, fed and happy.

I woke up to my mom taking my pulse. I had sent her a text earlier in the morning telling her what was going on. She tried to get in touch with me (I had my phone on silent) and when she didn’t get a response she just came over.

I am so happy that she did. My blood pressure at this point was 112/100 and the pain wasn’t as severe, but still present. My mom made me call my primary care doc and she drove me to and from the appointment (and she paid for it).

My husband was basically clueless. He also has high blood pressure (usually 140/90) but he has never had any symptoms. He was at a loss for what to do for me. He had good intentions, but just didn’t know what to do.

So I went to see my PCP. The doc thinks the headache is from the blood pressure, or that my migraines are getting more intense because of the blood pressure. I already knew that I was drug sensitive. I had no clue I was blood pressure sensitive as well.

For perspective, a blood pressure like 112/100 is concerning. But some people are able to function with consistently high blood pressure without any sort of symptoms. I have seen people with bp as high as 200/120 and not feel it. That is why it is called “the silent killer”.

I have never had any problems with my blood pressure before. It actually runs low. Normal for me would be 98/70.

The doc is also very concerned about the associated symptoms (headache and dizziness). She actually wants me to use a walker.

So, she started me on a blood pressure medication. Fantastic. I am to call if the pain gets worse, if my bp doesn’t drop or if I have any more problems.

I am calling her this morning because the pain is still present. Maybe 3-4/10. But I’m concerned with taking more Treximet, as it is a vasoconstrictor and can increase blood pressure. I’m hoping she can help with something else for the pain.

I am heading back to bed now. Doc thinks it may take a few days to settle down.

I still don’t know why this happened. It could be the steroids. Or the weight gain. Or stress. Or something completely different.

Grrr!! Can’t something go right for once??

What is in a name?

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With my first marriage, at the naive age of 22, I quickly changed my name.  I had two reasons for doing so, 1) my maiden name was constantly butchered by the tongues of the northeast, not being used to seeing Hispanic last names 2) I guess I was still in the “rebellion from the parents” stage and wanted a new identity and 3) My former husband was very vocal about the change of my name in the event that we had kids.

When I got divorced at age 27, I couldn’t wait to change it back.  1) I hated the daily reminder of my failed marriage every time I signed my name on nursing notes and 2) no one in Texas knows how to pronounce a French sounding last name.

When my husband proposed to me in 2011, I was again faced with the name change dilemma.  What would I do after the wedding?

My husband is Italian.  Second generation Italian.  His entire name is extremely ethnic Italian, not just the last name.  So ethnic that he goes by a nickname in his day to day life.  I am sure that most of our friends do not know his “legal” name.

We have been married for 8 months and I still have not changed my name.

My second husband could care less that I share his last name.  It is just a non issue.  To him, it doesn’t reflect my commitment to him and our family.  If we ever have kids,which I hope we will, they will obviously have his last name.

Since I live in Texas now, there are several (hundred, thousand?) people with my last name, obviously most of my extended family.  I was amazed in the first few months after changing back to my maiden name that no one butchered it.  White, Asian, Hispanic, all colors of the rainbow seemed to understand the correct pronunciation.  It helps that there is a chain of eateries in the local area that is owned by a very distant cousin who shares my last name.

Again, for me, changing my last name means changing my nursing license.  Going to the Social Security office, going to DPS, going to the bank and making copious copies of the marriage license and SS card to prove the change to every other entity that is in my name.

At the pharmacy, they refuse to change my name back to my maiden name because I filled prescriptions there under the pre-divorce name.  So if I change my name AGAIN, I will now have a very long and multi-ethnic name attached to my medications.

Also, my husband’s ex wife, and mother of his child, still uses his last name.

That just feels icky to me.  There shouldn’t be two Mrs. _____ who care for my bonus child.  Confusing as hell.  And I wouldn’t put it past her to attempt to impersonate me to get information that she should not have access to.  Of note, my husband’s mother (also Mrs.____) passed away last summer.

But, the major problem with being married and retaining my maiden name is that people who are trying to be polite, call me “Mrs. insert maiden name here”.  That effectively makes me my mother and my grandmother.  Both wonderful women, but quite awkward to hear.

However, recent events regarding my daughter (who obviously has my ex-husband’s last name) might push me toward the name change.

Her sperm donor consented to termination of his parental rights toward her.  In order for that to occur, my husband needs to adopt her.  And we will presumably change HER last name.

I can either change my name with her, and all parties in this household will be under the same last name, including the cat, or she can just change it and I’ll be the odd (wo)man out.

Or I can hyphenate.  This is the most attractive to me.  I can hyphenate the maiden and married last names.  I would still use my maiden name for any writings I produce.

I want to do SOMETHING to signify the legal adoption and “official” sanction of my husband as my daughter’s father.  But am I ready to give up the last name I have used for 25 of my 30 years?  And fought so hard to get back?

I have time.  My goal is to have the adoption completed by the end of the year.  Maybe I’ll put it to a family vote.

Quick post

Ick.  Quick post today.  I was really productive yesterday.  Breakfast with my mom, cleaning the house, dinner with my entire family.

My reward?

I feel like crap.  I have no better way to describe it.  I feel like I have been hit by a truck.  Like someone siphoned all the energy from my body.  Completely drained and exhausted.  And it is pissing me off.

I hate the toll that this disease is taking on me.  I really can’t go out in public much because when I do so, I end up coming home and crashing.  And then feeling like ick the next day.

I’m trying to incorporate gentle exercise into my routine, and I’m able to tolerate it somewhat.

It is just frustrating.

So its a “bed day” today.

Maybe I’ll feel better later.  Just in time to take the methotrexate.  Lucky me.