Chronic illness doesn’t go on vacation

I am 4 days from the beach…

Ahhhh….I can’t wait.

I’m am incredibly fortunate that my mom has invited me and Sunshine to a “Mother’s-Daughter’s Weekend” to the beach with her friend and friend’s daughter.

The beach has always been restorative for me. I don’t know what it is, I wasn’t born near the beach, but for as long as I can remember, that has been my preferred vacation spot.

Living in Pittsburgh, the city on the wrong side of the state for an ocean, my family would trek to the Jersey shore, Virginia Beach or Myrtle Beach (that’s in South Carolina). More of the latter rather than the former….and a full 12 hour car ride away.

Now living in Texas, the beach is 4-5 hours away. It is entirely possible to leave on a Friday night, find a hotel on the fly, and then drive back on Sunday. Not so when I was growing up.

But this time we are trying something new…Florida.

My only concern is of course, my health.

I have been able to stagger the methotrexate doses so that I won’t be injecting while on vacation, but in my poor planning (as in I just looked yesterday) I don’t have enough Lyrica. And due to the prohibitive cost, I am in the Pfizer patient assistance program. Not sure if it will be here by Wednesday. So I’m rationing the pills, going to reorder and have it delivered for while I’m gone.

I’m also concerned about medication side effects. Apparently, methotrexate increases sun sensitivity. I went to an event at Sunshine’s school two weeks ago and got burned. And I never burn. I’m Latina.

It didn’t look like a “real” burn either. More like scalded skin. It only hurt a little, and it faded in two days, but this was Texas sun in April, nor Florida sun in May.

I am bringing a TON of sunscreen, my mom is letting me borrow a hat, and I will be under an umbrella at the beach.

I’m also concerned about the drive. I’m not driving (my driving is now pretty much nonexistent these days) but I will be in the car for 8 hours. I also get horrible motion sickness, so I can’t read in the car and I’m hoping I can download some audiobooks in the next few days.

Traveling with chronic illness is like travelling with a baby.

I have to remember to pack every single medication I take daily, every medication for associated symptoms that I could possibly encounter, comfort items, etc. In addition to packing for Sunshine…

Other than that, I’m pretty excited. Looking forward to relaxation, the ocean, getting out of the house.

Next on the travel list? I will be going (going) back (back) to Pittsburgh (to Pittsburgh)…

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Stick a needle in your eye

 

AArrrgh!!

My brother, who is younger and a hockey player, told me that I was very brave and very strong the last time I talked to him.

He said “I have no idea how you deal with the eye injections, I know I couldn’t”

That means a lot coming from him.  He is the big, bad hockey player.  He has knocked out his teeth, taken pucks to the body and sliced open his arm (requiring stitches) when someone landed on him against the boards.

But I didn’t feel all brave and strong last week.

The good news? My eyes are improving.  Minimal inflammation in the left eye (but I still am developing a cataract) and minimal in the right.  But the doc still wanted to inject the right with steroids to “wipe out that inflammation”.

So I endured that circus again.  They do use numbing drops, numbing gel.  But putting the betadine in right before the injection really sucks.  It burns, it feels like someone threw sand in my eyes.  And I can’t blink because they put one of those eye clips in that keeps me from blinking (I felt like I was in A Clockwork Orange).

So the injection itself is painful too.  And it hurts for the next 24 hours.  Like “require narcotics” pain.

I stay away from pain meds.  Just because I have pain everyday, and if I used something for pain everyday (non-prescription or prescription) my liver will be shot by the time I’m 40.  But this eye pain.  Wow.

It hurts to move your eye at all.  Even with a lovely eyepatch (I told the doctor and the techs that I felt like the “Governor” from “The Walking Dead”), when my left eye would move, so would my right.  OWWWW!

Another bad thing about the injection, if he does it right, the pool of medication can be seen in the corner of my visual field.

I keep thinking I see people or shadows walking through my house, even though I’m alone.  Very freaky.

And the pool of meds will probably be there for the next week or so.

The only good thing?  He didn’t cause my eye to hemorrhage this time.  No bloody red ring around my iris.

In other news, I’m starting to use apps on my new cell phone to help track my health.

So far, I have one to track pain, but it can be modified to track any symptom, and one for my blood pressure.

The blood pressure picture isn’t very pretty.  I’m still running 120s-130s/90-110s.  I’m still taking bp meds that wipe me out completely.  Looking at the graph of my blood pressure over the last month, it is a huge rollercoaster.  Great.

But at least I have a portable record that I can take with me to the doctor’s office visits.

I would like to find a better one to manage all my symptoms and their severity (not just pain), but so far this is pretty good.  And free.

Next week my mom is whisking me and Sunshine away to the beach.  I am in definite need of the R&R.  Not to sure about the 12 hour drive though.

People assume that because I can’t work right now, and because I barely leave the house, that I am already relaxing and  enjoying my time off.  Nothing is farther from the truth.

I struggle every day to do basic things.  Take a shower, do the dishes.  A huge pile of laundry is looking at me right now. I end up sleeping a lot due to the medication side effects.  When I sleep to long, my body aches.  And then I stiffen up and can’t move.

So its not fun and games being sick all the time.  TV is boring, I can only read so much or go online so much.  Some days I’m too sick to even do that.

I would love to be back at work.  I miss my patients, my coworkers and the health insurance and pay.

Grr…

Achoo!!

© Dinna79 | Dreamstime Stock Photos & Stock Free Images

This really sucks. I still haven’t 100% recovered from the flu from hell, and now I have a cold that wants to live in my body forever.

Saturday morning when I had a sore throat I could feel it coming on.  But I still took Sunshine rock climbing (with her Girl Scout troop, I didn’t participate) and then went to a rally downtown that I was writing a story for.

Then I had dinner with my parents and their friends.  I came home that night feeling horrible but I had already taken my Leucovorin dosage and HAD to follow with the methotrexate later in the evening.

I haven’t been out of bed much since.  Yesterday I couldn’t even look at the computer.  Today I’m having limited success.

I still managed to finish my story and make dinner today, so the day isn’t a total loss.

Sunshine has been misbehaving lately, and her latest stunt earned her a weeks grounding to the house.  Having to explain to her time and time again that her behavior isn’t acceptable and her actions lead to consequences isn’t helping.

Any kind of viruses lately take a higher toll on my body.  They also last wretchedly longer than in the past.

A year ago I could take DayQuil and go about my day.  Now I have to stay in bed.  I know its the effects of the methotrexate.  But I don’t have to like it.

I have a wonderful husband, however.  He doesn’t hesitate to get me whatever I need to feel better.  I know how fortunate I am to have him.

I’m hoping for a run of more healthy days.  If I have a few in a row, I may venture back to yoga class…

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.