Making Time For Pain, and Life.In Between

So, I had my IVIG Infusion on the 20th for the Hypogammagobulynemia and it did last 6 hours.  The process itself was not to bad.  It was a basic I.V. and I drank a lot of water and watched a few movies.  The nurse that came was really friendly.  As a matter of fact, I think she talked a bit to much.  I was glad my husband was home because we had to lock up my cat in another room and she cried and cried so he would close my door and let her out once in a while.

The Hellish part came afterward.  That same night the headaches hit.  As you all know, I am a headache sufferer anyway and these were intense.  I mean Intense!  They would slam on sharply and cause nausea.  Needless to say, I was up crying and taking meds and even vomiting (once) along with dry heaves until 3:30 in the morning.  I was actually thankful we don’t have a gun in the house because you just want the pain to end at a time like that.  (No, I would not do that.  I don’t believe in it.).  Anyway, the next day was pretty much drugs and sleep and today I made it to the postal store and to Walgreen’s before some more meds and Yes, more sleep.  My husband had taken the day off too.  I really am a sucky or sicky wife.

I have my first Botox treatment on Thursday.  I sure pray I don’t have headache side effects from that.  I seriously don’t now if I can handle anymore.

In other news., I mentioned I went to the Postal Store today.  That’s because someone posted on Facebook about someone needing help due the flooding in Indiana.  It always makes me feel good to be able to send a Care Package to someone who really needs it verses going through the organizations such as Red Cross, Salvation Army, etc.

So, I got a box together and got it out.  I’m sure he can share what he can’t use with friends and neighbors who also suffered loss.

It feels good to know that between my pain bouts;  I could still do a good deed for someone else.

Weather Changes Cause Pain

Well, Crap, Crap, Crapitty-Crap, My head hurts.  I woke up at 5:30 with a Migraine and took my pills.  I don’t want to take another set and sleep for 3-4 hours a stretch.  I could try the other pills that I know work and sleep only one hour this time.  Ugh!  It is raining this morning which is not helping.  Every time we have a severe weather change, my head freaks out.  Guess I’ll have to eat in a few and take something and lay down again.  I  believe  I am going for one of the stronger ones this time.  I don’t care.  I don’t want the entire day wasted again.

In other news, yesterday was headache-free and I got a bit done.  I actually wrote on my book.  I can hardly believe how much hope I had when I lived with that Ex.  I was in La-La-Land firmly believing everything was going to get better and it was going to be the perfect relationship.  Oh, what a silly, naïve, innocent thing I was.

I need to buy some more gluten-free food but I don’t want to go grocery shopping.  To the websites I go.  Yeah, I know shipping gets expensive but whatever.  There are so many different sites and maybe I can get some food shipped from the grocery store itself which may be cheaper.

That’s it today (at least right now), I think I’m rambling.

“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.?

Pain & Credit Cards

Another bad day for headache pain.  Another day of pills and sleep. eating and water.  That’s it.  My husband came home right after work and had suggested last night and even this morning possibly doing something tonight, but it wasn’t meant to be.  Oh, I tried to get up.  I got up long enough to clean up the cat barf from the carpet this morning.  Don’t know what that was about.  I knew driving anywhere today wasn’t going to happen despite the fact I gave the dog the last of his treats this morning; but he will get lunch meat or cheese or something tomorrow.

I’ve already contacted my doctor and am awaiting authorization from the insurance on Botox treatments.  Yes, I know the side effects.  I’m willing to risk them with all this pain.  I am so tired of pain.  I don’t think I will ever have a pain-free life but I would like to lessen it.

Also, the phone kept ringing due to my Hypogammaglobulynemia and the infusions.  They have been approved.  They will last 6 hours and will be given at home.  I’ve had a phone interview.  Now, I will just have another phone call soon to set the date.  I guess I can lay in bed on those days and watch t.v. or read or play on the phone or whatever.

On another note, my Pay-Pal Credit Card arrived today.  I’ve decided to only use it for e-Bay purchases.  I will know the difference because it has my baby’s (cat) picture on it.  I think the first thing I will use it for will be a gift for my Niece who will be graduating High School in June.  So, I still have two main  credit cards technically since I consider E-Bay like a store, and a debit card.  I have a few other store cards too but I don’t use those very much.  This will be a good way to track just how much I really spend on e-Bay.

A Rant For Real Sickness

I just read a blog that was a bit disturbing to me.  One of those blogs that went on about.. “You have a choice.  You choose to be healthy.”  Blah, Blah, Blah.”  Okay, Blogwriter Person, since I am not going to name your Blog or you because that would be rude and I didn’t leave a comment.  It doesn’t really matter because there are many people out there that believe the same thing. ” It’s your decision to get up every day.  Just fight through the pain.”

Were you people born with rare disease issues that have weird side-effects that keep us sick in one way or another?  When you have head or stomach pain to the point that you are vomiting and can only pray for that pill to take the pain away and you can barely move your head or handle noise..can you seriously tell me you are out running a marathon or doing your yoga or Eating a STEAK?  Plus, seriously, “Eat Like A Lion?”  Give me a break.  I don’t care what the Cavemen did.  They may not have had our ailments but they did not have our weather with the pollution and cars, etc to deal with either.  Their meat came straight from the animals and their vegetables came straight from the ground.  No sprays on those vegetables to keep them fresh.  My system cannot handle wheat and I do not believe in eating animals.  Plus, everybody’s body is different so the same diet does not work for everyone.

Back to my questions to people with this belief or philosophy, is my choice of waking up saying I am going to be healthy today going to get my body healed soon so I will not have to have a hysterectomy?  It hasn’t worked so far.  And, it’s funny because on Friday, I tried to make that choice when I had to do the treadmill test without caffeine and my headache pain was so bad; I could not go through with it.  I was vomiting and my husband had to pick me up from the hospital and take me home.

It’s a great idea in theory, but it doesn’t work for those of us who are seriously ill with Real sickness.

This reminds me of when I was in school and could never pass  a test because I had test-anxiety.  Nobody ever caught that and I failed almost EVERY test.  I pretty much passed all my classes with homework and extra credit.  I could study for hours and I would still fail the test.  Just say the word, “Test” and I would blank out.  If I believed your philosophy.  I could just believe I would pass the test and I would be able to pass.  Guess what?  I tried that once.  Still failed.

Being chronically ill, I get tired of people with this belief/philosophy.

I don’t mean or try (as a matter of fact, I try not to) to complain about my health all the time.  But, this blog is to update friends, family and strangers about my life especially the health aspect, so I don’t have to keep repeating it.  I have a lot of health issues which I Can’t Help without doctors and pills or shots, or whatever.  I am helping myself in getting help from others.

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.