DRAFT TODAY, POST TOMORROW: Some posts may be in draft status until I (aka procrastinator extraordinaire) get around to posting them. All drafts have been published through 2011.



Tuesday, November 1, 2016

Red Eyes

I've been seeing Dr. C, an eye specialist, for my nearly constantly watering irritated eyes. Today, he revisited the idea of Lipiflow ($750 out of pocket) in conjunction with another treatment (3 times at $350 each). I'm not even getting the spray he wanted me to use on my eyelids because my insurance doesn't cover it and it's about $700. But I'm considering it.

I think my medical bills are so high this year, I may be eligible for a federal tax deduction for the rest of what I spend at this point, so maybe this is the time. On the other hand, I don't have the money, so it's going to go on my credit card and have interest charged.

In the meantime, he mixed some standard eye drops with some type of glaucoma medicine that he said helps with the redness. It worked right away too. It won't make my eyes less irritated, but I won't look like I've been smoking. So there's that.

Also of note, since I hit my deductible, I am getting my Restasis for free from Costco. I got a 3 month supply and I'll get another right before the end of the year. I am trying to figure out how that works if I change insurance. My insurance rate goes up December 1, dental goes up January 1, and COBRA coverage ends March. So I'm in the market. I can't even hope for something better, just maybe not worse...

Tuesday, October 11, 2016

Phase Four

I'm in the Phase Four trial for Alemtuzamab (Lemtrada) now.

  • 500 meter walk under 8 minutes
  • Read second line from bottom, right eye, was not 20/20. Less able on left eye.
  • EDSS: 2 at factor 2, several ones.
  • No reflex in left knee, and he kept trying. Um, ow, cut it out, dude. There's no reflex--pounding on it won't make it happen.
  • Abnormal reflex for bottom of feet but it was symmetrical so not an issue.

The visit took so long. SO LONG. I'm probably going to have to take vacation days for these visits. Definitely the next one--there's all of this plus the MRI.

Friday, September 30, 2016

September update

Oh, the things that happened this month:

  • birthday party for my niece's daughter
  • Labor Day swimming at my cousin's
  • (always) Dr. Q
  • webinar on natural treatments--mostly talking about mushrooms (I don't have time for more crazy #justsaying)
  • endocrinologist appointment--she was not impressed with how quickly my primary doctor reduced my thyroid meds so she asked me to come back next month for new labs; I am currently taking 100 mcg of Levothyroxine (Synthroid)
  • work dinner Olive and Ivy--pretty good, and accommodating
  • went to Becketts Table and it wasn't as good as I remember, kind of weird actually; a small, tasty piece of salmon on a plate of carrots and a side of green beans after I was done eating.
  • went to my niece's daughter's and son's birthday party at a park

cat in a bag - tongue out Tinker

sandwich on Bread SRSLY (a gift!) #giddy
sandwich on a Bread SRSLY roll #happiness


Sleeping Cassi--but I missed the photo contest deadline

Mmm, bacon--the low sodium has a shorter ingredient list.

Fruit!

Bacon, and bacon wrapped apricots #yum

No weird ingredients--a Costco find!
The tri-tip after cooking #nomnom


roasted asparagus
My major malfunction has been the eye doctor/glasses shopping. This seems like a short, simple process for most people. However, I:

  • went to the eye doctor, got a glasses prescription, 
  • went to Costco and found frames, had glasses and sunglasses made, 
  • picked up new glasses and sunglasses, couldn't see but they said it was the prescription,
  • went back to adjust (the ear piece was painful),
  • went back to the eye doctor but they just had me see one of the technicians in the front and said it was probably the coating on the lenses (#WTF), 
  • went back to Costco where they checked the prescription and sent the glasses back to be remade, but not the sunglasses, 
  • picked those up and still couldn't see, 
  • made and had an appointment with my friend's eye doctor at another Costco, got a new prescription, 
  • got my glasses and sunglasses remade, picked up the glasses first,
  • picked up the sunglasses and had the glasses in for an adjustment.


I got this style of sunglasses

I still need to take the sunglasses in for adjustment as one of the arms is too loose, but seriously, who else goes through this kind of crazy to cross ONE ITEM OFF MY LIST? I cope but I hate that this is my normal. An item on my to-do list took me two months to accomplish. I can't wait to do it again next year! #Ispeaksarcasm

Friday, April 15, 2016

Just venting

I went to the eye clinic this morning. I was there for two hours. It was overwhelming and sucky; it was maybe beneficial. Tests were done. Treatment options and the huge cost to me were discussed. The plug was removed from a gland in my left eye but the one in the right was not removed.

I didn't fall apart till I left.


I. Am. So. Tired.

I'm tired of sleeping - not enough because I can't, or enough, or more than enough, and in all cases, still feeling bone weary exhausted.

I'm tired of appointments and tests and treatments with no real benefit.

I'm tired of spending So Much Fucking Money on my health.

I'm tired of making decisions about what to try next or what to skip altogether.

I'm tired of being a guinea pig.

I'm tired of doctors who don't know me after years of seeing me.

I'm tired of eating "right" and still fighting my digestive system.

I'm tired of thinking I should or could do more (I should do that diet and figure out what *else* I can't eat).

I'm tired of collecting diseases.

I'm tired of fighting but it's all I know.

#justventing #FML #MSwarrior #MSismybitch #Iamenough #NoOneTalksAboutGravesDisease #lostmythyroidhaveyouseenit #MSsucksballs #autocorrecthatesfucking #butIlookgood #outofspoons #allergicgirl

Tuesday, April 5, 2016

Phase 4 trial

I still haven't gotten my last check from the Phase 3 trial but here we are, on to Phase 4. It's at Barrow's, and it took a little finding. No tests were really done today, just a review of my file. It appears I cannot change my initials to match my name but otherwise, pretty uneventful. And I only have to go every six months!

Tuesday, January 12, 2016

Last Phase 3 visit

It seems I'm doing pretty good overall. My EDSS was 2.5 and I did the 500 meter walk in 9 minutes. I'm done with the Phase 3 trial and moving on to the Phase 4 trial, which is done at Barrow's, so my contact will change, as well as the location, and I'm sure some other relevant things.

I'm not sad about that change, since I'm having trouble getting my contact information updated and the piddly payments I'm supposed to get are sporadically given to me. That may seem minor but I get TAXED on that shit! So of course, she did not have my check today. She's going to send it. Probably to the wrong address since I can't get her to update it. It's always something...

Thursday, October 8, 2015

Break

I realize I have been MIA. I have posted once this year. And that was only a Bible verse. I have a LOT of drafts and photos that may never be posted. The perfectionist in me is not happy about this. At. All. But.

But. Oh, where to start...

My posts became more infrequent and less personal last year as I started changing my story. See, I'm a good southern girl. Marriage is forever; you only leave if he's hitting you or cheating on you. You don't leave for all the other reasons that eventually make you feel less yourself, unimportant, stressed out, out of control, and hopeless. With some help from my sister and a few patient friends who didn't tell me what to do but let me know all the important things that eventually seeped in, I changed my story.

They told me:

My happiness is as important as his. I deserve to be happy. I am worthy. I need to choose me. Love yourself. It's okay to be divorced.

Ooh, deep breath. That last one...it was hard but my sister asked how I felt about her being divorced and then why it was okay for her but not me. Damn, girl. That was what I needed to hear.

But it took me some time. I thought I could make it work. He didn't want to go to counseling. PEOPLE! If your girl or guy asks you about counseling, something is wrong. GO!

I started the new year with bronchitis. I was so sick of being sick. I was tired of getting help that wasn't helpful. I was tired of redacting my blog posts to not offend potential readers who know me IRL. I was tired of relying on my friends for support my spouse did not want to give. I was tired of his jealousy of my friends who were just trying to be there for me as I fell apart.

I decided I would make my number one priority this year my health. I would ask myself "does this support or improve my health?" I wanted to be intentional about focusing on what I could control and (trying to) let the rest go.
Focus via the Behavior Gap


There was an argument. I told him I didn't feel safe in my kitchen due to the "help" I was getting from a family member. He assured me it was my kitchen; I should feel safe. But my food allergies weren't taken seriously. A few days later...

The last straw. Some people who get my allergy issues understand this was indicative of the relationship; others only see this as the last straw. I see it as both. He cut some Velveeta, which of course I can't eat, then wiped the knife on the towel hanging on the front of the sink. The one I use for my hands. And dishes.

I questioned him and he said I should assume the towels are contaminated. Um, then I should NOT feel safe in "my" kitchen. I realized HE was an obstacle to my health.

And I was done. I started looking for a rental. Someone pressured me into scheduling counseling, even if I had to go alone. When I told him, he tried to argue that we didn't need it. He decided to go when I told him we might not need it but I'm moving out.

So he went with me.

It was enlightening. He finally heard me. He said several things that opened my eyes that we were living his life and his dreams and he ignored the things I said, the things I let him know were important, and the things I needed. And it had been this way since our first date. No wonder I was so miserable. (Don't get me wrong--there was a time we were happy. And THAT makes me the saddest of all.)

I moved out. We hired a mediator. (I hate her; don't ask for a recommendation.) He decided to take an out of state transfer for work. (His job wasn't staying here.) We sold our house--his dream house, this overwhelming weight dragging me down. We split the dogs and the stuff, with the only real debate coming from my desire to keep our piano.

While I was looking at how to improve my health, some things happened at work that concerned me. I thought I would tackle getting a new job next year but several opportunities came up and I started a new job.

I'm currently in the process of buying a house; my rental is going to be sold soon so it is time to find my permanent place.

I have worked so hard this year to take this picture of what I want my life to be and make it my reality. I'm creating my bubble.



I will share a little of my bubble with you.