No Pill Refill?

How the heck am I supposed to re-gain the weight I need to with diarrhea and headaches? The diarrhea is probably caused by stress I’ve been under (not like I’ve been under any.) I wonder if grief and loneliness can bring on diarrhea. I’m sure a change in eating habits can. But, I told you. I’m getting back on track to eating right or at least the right amount.

I’m fighting with the docs today over my headache meds. I take two headache medications. Both of which I am almost out of. They won’t fill one as long as I continue to fill the other one since they are both for Migraine. I am almost out of pills. Seriously. I can’t pay without insurance because the one generic is still $1250. Guess I’ll be taking something I am not supposed to off the store shelves for the next month until I can get a refill. This is ridiculous.

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Botox Experience & Reclusive Contentment

I had my first set of Botox injections yesterday.  By set, I mean like 10-12 or more.  I don’t know.  They were in my head.  Heck, I think I’m already brain damaged.  What is he doing?

I told the doc most of my pain is on the left side so guess where he gave most of the injections?  Yep.  The needles are actually smaller then acupuncture needles, however, there is medicine involved and you can feel the medicine go in.  At first, it felt like bug-bites.  No problem.  Then, he hits the nerves in my scalp right where the pain points are.  Yikes.  When I was laying on my stomach and he hit a point on my scalp I think I made some weird, moaning, dying noise or something and he asked if he was hurting me.  I’m like, “That one did.”  Anyway, I asked about side effects and he sort of dissed them.  But, I’ve read about them.  The headache side effects really weren’t to bad.  A little Acetaminophen w Codeine kicked it.  I do have bumps all over my head at the injection sites and my head is a little sore when moving it..but all in all I think this one is okay.  It will take about 3 days to kick in and IF it works; it should last for about 3 months.  Now, this will not take my headaches/Migraines away but it should cut them down.  Wow, maybe I will wake up and go to bed without a headache for  a while.  That would be a dream come true for me.  Oh yes, the doctor also mentioned Botox helps wrinkles.  Everyone keeps bringing that up.  That’s great.  What are you implying?  I really think wrinkles are the least of my worries right now.

When I mentioned to my sister on the phone that I am becoming a Recluse and I am actually enjoying it; she sounded sad.  Is there a reason why we should not enjoy our own company?  Do we really need to feel sorry for those that choose to be anti-social?  I think it’s the fact that I am sick so much.  Outside stimulation can just cause me to get sick a lot more, so it’s almost worthless for me to do it.  I have most everything I need here at home.  I do think maybe if we move to a mobile home (yes, we are back to discussing that.) and maybe  if I can get these headaches under control; my feelings may change a bit and I may want to get out a bit more then I do now.  But in the meantime; I am content where I am.

Everyone Is A Doctor

Isn’t it amusing when you tell someone you have a medical problem (such as headaches)  and suddenly everyone gets out their medical degree and puts on their uniform and gives you advice?.

I called to return a Therapeutic Pillow I ordered which was supposed to be good for headaches, I thought.  However, I am a side sleeper and it has a crease in the center and is meant more for back sleepers.  One of the Customer Service Reps had called the other day telling me of the return policy.  So, I am talking to the girl on the phone and I mention I am a Migraine Sufferer and the pillow is not helping.  She says, “Are you drinking enough water?  My daughter gets migraines but it’s because she doesn’t drink enough water.”  You ever feel like smacking someone through the phone.  I know she meant well.  But relay.  That’s the solution!  None of the doctors in the world can figure this out and it’s my water intake??  I don’t think so.

Then, on Facebook (although I know well-meaning) I find recipe’s from friends for smoothies or drinks to help with headaches and articles about food triggers.  Gosh, it could be food triggers?  Really?  Yes, I know most of my food triggers.  I love Pumpkin Seeds and Cheese but I try to stay away from them especially when I am having bad headache episodes.       I’m already on a gluten-free diet and I have to eat.  My doctors and I both keep track of my diet record.  Thanks for helping point out the idea of food triggers.

Needless to say, I would be shocked should a friend or stranger figure out a solution to this problem when the doctors can’t.

If someone tells you they are sick with headaches, or any aches, try saying, “I’m sorry or “I”ll  pray for you.”  and leave it at that.  It really does help, just  to know you care.

And The Nomination Doesn’t Go To… (My Feelings)

On my last MRI, they’d found white spots and weren’t sure what they were.  Lately, I’ve been reading about white patches in the brains of people who suffer from Migraines.  There ya go.

I contacted my Neurologist yesterday who adjusted my meds.  However, last night before adjusting them; I had horrible, sharp, stabbing pain (almost like an earache) from the left side; which literally made me cry every time it hit.  I thought I would need to go see my Primary today, but surprisingly, I feel better.  I tried the Neurologist’s medication adjustment before bed.  It seems like I get 3 days of pain to 2 days of no pain a week.

Sorry, if these last two entries haven’t kept  your interest.  Sometimes, I don’t write them for humor purposes.  I actually started this blog to keep up with family and friends re: my health and life so I don’t have to keep repeating myself when people ask:  How are you?  I just send them here.

I actually like to throw in a few curve balls and keep it interesting and fun as well.  Like everyone, I LOVE to get Followers.  As a matter of fact, there is something I have to admit/confess.  “It’s been forever since my last Wordpress confession.” HA.  (If you were ever a Catholic, you’ll get that one.)

Anyway,

I’ve been on WordPress for over a year now and I admit/confess that sometimes I get jealous/annoyed/angry when everybody I read and follow keep getting all nominated for these awards and I’ve yet to get nominated for one.  I’m not saying you don’t all deserve it because I’m sure you do.  Heck, I follow you so that is saying something. Right?

I am not asking your advice on how to get nominated for an award.  Nor, do I want your sympathy or to be condemned for my feelings.   I just wanted to admit them.

By the way, it isn’t so much when someone gets nominated.  It’s when they keep getting nominated.  It seems like once someone gets nominated for one award, it becomes a cycle.  Some people I follow post things like, “I haven’t gotten around to responding and thanking everyone for the numerous award nominations I’ve received so I will now and here are my nominations:”

What?  I feel like if I received an award, I would be so honored/excited/happy. I would fall off my chair!  I think the only reason I would not respond in the next post would be because I broke something after falling out of the chair.

Then, when reading the ones I follow and the numerous award nominations they receive.. some/most of which are following me back by the way. I look anxiously to see if my blog was worthy of their nomination for the award.   But alas, despite the fact, they follow me and they’ve received 12, 14, 112, whatever awards. Once again..mine is not in there.

It may seem silly of me to dream of a WordPress Award Nomination, but I guess it is sort of like in High School.  I still feel as if I am trying to fit in and one day, I really will be accepted.

And, don’t you dare nominate me because of a this post.  That would be wrong on so many levels.

I am curious though,

How do you feel about the Wordpress Award System and do you ever feel the same way I do?     

“Haven’t Got Time For The Pain”..Sing It With Me.

Would someone please stop this pain?  Like, maybe just come knock me out with a bat and get it over with for a while?  Not permanently.  I think I need to talk to my Neurologist again.  This Fioricet is not working for me!  Since he changed it from my stronger meds, I’m getting these headaches every other if not, every single day!  I don’t know what to do.

Wait, I literally just opened the auth for my Botox injections with my Neurologist.  I am going to call and schedule the first one.  In the meantime, maybe he can change the dose of my headache med or something.  I get so tired of feeling like I’ve been hit by a Mac Truck.  Plus, we have vacations coming up.  I want to enjoy them.  Why am I dreading the thought of being around noise, people, etc.?

Test Didn’t Happen

So, my Cardiologist want s me to take Treadmill Stress Test or Myoview..part of which is a Lexiscan. It’s a two-day test.  One day of which I am on the treadmill for a bit and I have an I.V. in my arm and they inject some stuff in me at the last minute of walking and the other part of the test is resting along with radiology pics.  I was told to take all my a.m. pills, but the first day I messed up and only took my anti-rejection so they did the resting portion first and told me to return on Friday to do the treadmill part.  They also said NO Caffeine whatsoever (my headache medicine has caffeine in it) or coffee, etc. 12 hours before the test.  So, here’s the thing.  I woke up on Friday, the day of the test with a splitting headache (Migraine) and could only take a Tylenol.  I took all my a.m. pills on an empty stomach.  I was dry heaving before I even left the house but I said a prayer and figured I would get through.  I was wrong.  The cardiologist girl said, “You can have caffeine before this test.”  By then, it was too late.  Turns out, the radiologist had given me the wrong information.  I had the I.V. in and I was ready but I took one look at the treadmill with my throbbing head and knew it was not going to happen.  Plus, my stomach was starting to churn along with my head.  So, they re-scheduled the test to Monday and unhooked me.

Originally, I thought I could drive home but then re-thought quickly and had them call my husband from work to come pick me up. (We got my car today).  By the time he showed up, I was vomiting.  After I got home and tried to eat and vomited again, I finally took a pill and slept…woke up..ate some more and slept some more until 5 p.m.  During the time I was awake, I called the dr. and made sure a cup of coffee would be okay Monday morning.  I also called Security at the hospital to let them know my car was there.

The hospital system is so messed up.  They really need to give patients (especially patients who have migraines) like me the right information when it comes to caffeine.

Doctors Delays

I don’t understand these medical facilities that think they can just make whatever rules/changes they want and their patients are just gong to jump to change along with them.  I have Hypogammagobulynemia.  Hey, I can barely pronounce it, much less spell it.

Anyway, I am supposed to be starting IGG infusions or injections soon.  Last I heard, they were getting approval for the first ones to be done here at  the house or in a local facility near me.  We live in Orange County and this test was authorized and approved by Cedars-Sinai in Hollywood, CA.  but I was told I would go to a clinic or facility somewhere in Orange County.  I just called Cedars to find out what is taking so long and now they are trying to say they cannot get approval and I will have to go to Cedars for these infusions.  I don’t think so.  I explained that would be a hardship because I do not drive freeways and my husband would have to take a day off work every month to drive me.  My doctor at Cedars had already said it could be done here in Orange county.  I gave them the name of my metabolic doctor here in Orange County and asked why I cannot simply go to CHOC (Children’s Hospital of Orange County) to have the infusions done since that is where I go to see my metabolic doctor.  So, Cedars is trying to work that out and I am expecting a call back today.

I am really hoping to get this started soon, as after this is done for a few months; I can get another procedure done which will really help another aspect in my life.

Being chronically ill is a pain..in more ways than one.

Short Health Post

Cedars-Sinai called and I have ‘Hypogammaglobulinemia’.?  It’s a weak immune system and you get 4 hour I.V infusions once a month for like 6 months.  It’s really rare and I guess only like 1 in 4% of people actually get this.  So, now I have two disease type things people can hardly spell or pronounce: Propionic Acidemia and this.

Fast March & Question 4 You

Wow, It really has been a while, hasn’t it?  March snuck up on me way to fast as did doctor appointments.  I got a phone call with a reminder of a doc appointment for this Monday which I could swear was in April so then I had to rush to the lab.  I also saw a doc about my headaches who put me on a new headache med as well as adjusted my Topamax and one of the two just makes me fall asleep around 8 or 9 p.m. or earlier….during my favorite t.v. shows.  It sucks because I seriously don’t remember the endings and I really was not one to fall asleep while watching t.v before.  To me, that is a bit scary.

In amusing news, Firepie is a bit annoyed her Aunt Lisa and her husband got themselves a cat.  When my friend Lisa came over to visit.  Firepie was all over her purse (as usual) and when Lisa was ready to leave Firepie didn’t want to get off of it and yelled at her.  She never does that!  I know she can smell Lisa’s new cat.  I discussed it with Firepie and she just isn’t sure about the situation.  When Lisa comes here; I guess we are supposed to talk about Firepie and give her the attention not the new cat despite the fact that Lisa and her husband saved it’s life.  Other then that, I guess Firepie is okay with it.

So, someone on Facebook asked what was one thing you are happy having done or accomplished so far and what was one thing you regret not having done or accomplished. I responded that I am happy having survived an abusive relationship but am annoyed at having not written the book about it yet.  I have no more excuses.  So, I sat down yesterday and started writing.  If I take it slowly, it will eventually come together.  I am going to work on it a little at a time (nothing like the Nanowrimo) competition.  This is a true story of my life and I really think it will help my mind to get this all out.  I started with notes yesterday, but I think I am going to start again today in actual story form and see where it takes me.

  Here’s the question for you: What are you happy you’ve done or accomplished in life so far and what is one thing you regret not having done or accomplished?  Just to add:  Do you think you may ever accomplish it?

*I would love to hear your replies.

Wknd Life & Motivation

Did anyone else go to see Identity Thief this wknd?  I mean obviously people did since it was like the top film or something.  We had to go late on Sunday because Sat afternoon the guy at the theater told my husband the wait would be a half hour so, after he watched whatever movie’s he liked.  He came home around 6 and we went to a different theater and saw Identity Thief.  Yep, my husband is movie obsessed.  It doesn’t matter that we have a 73 inch screen here.  I actually prefer to stay home in my pajama’s with my animals but whatever.  It was a good movie, I admit, although I think the critics were correct in saying Molly’s character (forget her name) overplayed it a bit.

Today was a really bad Migraine Day.  I had to take two different meds to get rid of it.  Oh, the pain!  I felt like I was getting hit on the side of the head with a bat.  My husband is so good to me and so patient but I know he gets really tired of it and I do too.  I think I am going to see my Neurologist and see about getting my headache meds changed.   I got up and ate something before going back to bed and he took a shower real quick to start his day, while I ate.  He had taken the day off and it must have sucked to have his wife sick half the day.  Then to top it off, Time-Warner decided to quit on us for like 3 hours so we had no phone, internet or computer.  Luckily, we did have some shows already taped which we had access too plus, I am in the middle of reading a really funny book.

I have started working out again.  Let’s see if I can stick with this for a while this time.  My sister fell and broke her arm/shoulder area on one side and her knee/leg area on the other.  Her fall has given me motivation to strengthen my muscles and stay that way.  It’s sad if that is what it took for a lifestyle change but.. I have a program for Wii titled, Fit-In-Six. and I am amazed at all the options.  I worked on my core a few days ago and I thought I would never move my abs again.  Then, yesterday it was a walk around the park.  Today it was the exercise bicycle for 30 minutes.  I guess I am doing what you call ‘circuit training” and doing something different every day so as not to get my muscles used to the same thing over and over every day.  I also have Wii Sports which I love, especially Tennis.

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