Not even worth it~

On the days I have doctor appointments I just know to be fasting and not to take Morning medication (including hydrocortisone) in case of whatever blood draw is done. Today the only difference was a 10am appointment versus my usual 8am appointments.

Our son was picking me up at about 8am, his appointment was for 8:30 and it was pointless to make two trips to town! I slept late, therefore had to hurry getting ready. Hurry!?!? Yeah right, it take so long for my body to function, much less to do so without the HC medication an hour before I even got out of bed. But I managed.

And the low Cortisol headache started…

And it got worse…

And worse…

We went to his appointment first, luckily just a blood draw. Then we had an hour and half to wait. We all (his fiancée and and our bonus son was with us) went to IHOP for breakfast (no I didn’t eat, still fasting) the smell of food was nauseating.

Then back for my appointment.

Oh my appointment.

Now by this point I am really not feeling! Not thinking straight.

We talk, he does his exams and then…

He shrugs his shoulders and says “I really don’t know what to do with you!” We laugh at the honesty.

I’m not to have any dairy.

I’m to return immediately the next time a joint is doing what it does.

No blood draw.

No blood draw.

Now ordinarily I’d be thrilled about this, but omg I’m suffering because of the lack of meds and today you don’t want my blood? Hahahaha.

Usually I don’t do nearly this bad without the delay in meds, for some reason today is bad.

The plans we had in town for after the appointment were cancelled JUST TAKE ME HOME!

In the parking lot I took my morning meds plus an updose. COME ON MEDICATION KICK IN BEFORE I PUKE ALL OVER MY SONS TRUCKS.

I just keep feeling worse.

We stop and get me some food. When I eat I call it renting food, because I never get to keep it for very long. As is usual, my body rejected the food.

I crawl into bed and sleep takes me quickly and deeply for a few hours.

I wake up, slowly scanning for pain, praying it went away while I slept— no such luck.

More updose.

Omg the pain.

Today’s appointment… NOT EVEN WORTH IT!

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Back to the Doctor~

I was just talking earlier today about tests, testing never seems to end, well I guess when new symptoms are always popping up that is to be expected.

So off I go tomorrow, going to see if we can figure out what they New symptoms are caused from and to see why the old ones have intensified.

I should be used to the tests, I should be used to the appointments, I should be used to all of this- but I’m not. Each appointment still scares me, what will be found this time? how painful is this test going to be? can we just do this test here and now so I’m done with it? what new medicine will I be on and for how long? is the doctor really listening or just hearing what fits his idea of what might be wrong?

Blah

Blah

Blah

I don’t think anyone ever gets used to being poked and prodded like a human pin cushion.

Anyway, I guess there is not point in being scared; whatever these new symptoms are, already are so it’s just answers (hopefully) that will be new.

*i hate when the symptom goes away the night before the appointment. My right elbow seems fine tonight! Haha.

Well, wish me luck,

Blessings.

A New Perspective on Friendships~

I have posted many many times about the friends who disappear, the friends who stop being friends after illness sets in. I have cried so many tears out of loneliness. I’m sure most of you understand this well!

Recently I was given the gift of a new perspective on this topic! I’m thankful for the lesson, but oh it’s hard to admit I learned it the way I did. But true to Chronic Gypsy fashion I will tell it like it is. raw.

One of the few friends that has stuck by me through getting sick, who would drive an hour just to sit with me even if I slept through it, the friend who surprised me with gifts, the friend who listened to hours on end of symptoms and doctor visits, who never told me to “be more positive,” she suffers Migraines, migraines that in the last year had gotten significantly worse. Do you know what I did?

  1. I researched! A lot!
  2. I had a billion “try this” suggestions.
  3. I even tried the “be more positive!”

Notice the bold print, what do we as Spoonies hate? Those exact things! Yet I did them. Oh yes, it gets worse…

I went through a period of if she is so sick how can she do _________? Yes, shame on me, I went there! Oh I didn’t stop there, it still gets worse!

I got angry! I couldn’t fix her, I tried. I did everything I could, nothing worked. I suggested a billion things and she didn’t try them All. and she kept getting worse.

Without realizing what I was doing or why I had pushed her away. I couldn’t stand to see/hear her suffer, it broke my heart! She needed to try harder to be well, I didn’t want her living the isolated Spoonie life like me, I didn’t want her to hurt like I do. She had to get better and she wasn’t and I was both mad and scared.

I had become one of those disappearing friends who couldn’t handle illness. I wasn’t there for her like she was for me.

Lesson learned! Apologies made!

I do have a new perspective of friendships! This lesson has opened my eyes in so many ways. I have this to say to my remaining friends…

I know you love me!

I know seeing me go through this hard for you.

I know it makes you feel so helpless.

I know it is scary for you.

I want you to know that just you being there for me to laugh or cry, to distract me from my illness or to validate a symptom, I just need you. I don’t expect you to fix it.

I don’t expect you to make me better on bad days.

I appreciate your research and guidance, but I am going to do what my doctors tell me too.

I’m here for you too, when you want to talk, even if it’s just an ear about what you go through because of what I am going through.

There is so much more I would say! This brings me to tears to even write. All of this time I thought the friends left because they didn’t care, when in reality, they did care but just didn’t know what to do anymore. Maybe.

Anyway, this has been an interesting life lesson, and I’m glad I learned it before I lost her as my friend.

Going With The Flow.

As you may have noticed I’ve continually been going down hill since mid-July! My depression has taken a beating! Anger! Sadness! Defeat! Anger! It’s been a roller coaster from hell!

Last night I told my amazing husband that from now on instead of laying in bed fighting the painsomnia that I was going to start getting up and reading or doing something because just laying there suffering was going to kill me.

So that is what I did. At 11:30pm I knew sleep was so far away, so I got up! I made a cup of nasty tea to help soothe my sore throat (oh did I mention I caught a cold? Grrr.) I started a load of laundry. (Don’t wash jeans when people are sleeping, the washer makes lots of noise!) and laid on the couch to study for a course I am taking. About 1am my body and mind were begging for sleep! I crawled in bed and slept till 4am.

Instead of fighting myself back to sleep I got up and went about my morning routine. Till about 9:30am when I went for a nap.

Instead of fighting what my body wants I went with the flow and wow, it made my day better! I had a bit more energy and my mood was certainly better.

Now I don’t know if this is a good or bad thing to do, but I am trying to adapt to my newest new, trying to make the best of whatever is going on now and it seems to be working.

I did finally remember to call the doctor today, a message was taken, you know how that goes.

I’m getting on my nerves!!!

Why is it, that nights seem the hardest? Emotionally, nights seem so much worse than days!

Today wasn’t an easy day anyway, I didn’t sleep last night, once I finally did sleep I was woke about an hour later by wicked nightmares!

Then my waking hours were worry & more worry!

The temperature was hot today and I was worried about my youngest son working in the environment he works in and lack of care by his supervisor.

My grandmother had a bad burn a week ago and there has been some family tension over that.

Finances.

This weird and very painful joint hyper extending thing. Yes I will call the dr tomorrow.

Did I mention the wicked nightmare? It wouldn’t go far from my thoughts.

Then like throwing my emotions in a blender I was set off by facebook posts; a friend battling cancer and a friend lost their home to Harvey brought on the tears. Then a smack in my face done intentionally by a wolf disguised as a lamb made me want to do more than smack back. Then a family member had a baby but due to facebooks choosing who’s posts I see I hadn’t even seen pictures or congratulated them.

That list goes on but in short I cry, then scream F*ck You, then cry, then laugh, then WTH? Then back to an anger, a dash is disgust, a little envy, and round and round and round we go!!!

And some where in there I am asked a serious, don’t respond emotionally, people’s feelings could get hurt- question.

*imagine a blender full of berries and nuts, turned on without a lid- there is a mess and berries stain…

But it’s night time, so all of that reeks of another sleepless night.

And round and round and round we go…

When the large is to small~

I received a gift card to Amazon for my birthday and my mind swam with excitement! I am tired of my boring medication organizer so I ordered a new one!

The one I ordered specifically said it was a “large” one! Wahoo!!!

And look, it’s pretty cool looking right?

No I did not check the dimensions!

It arrived today!!! Wahoo! What Spoonie doesn’t love getting mail?

And there she is, soft leather enveloping bright and well marked organizers!

By who’s standards is this a large?

I got my morning and evening meds in there! But maybe need a second case for early morning, mid morning, mid afternoon, and bedtime meds.

Don’t get me wrong, I love it! I will pack a couple of days worth and use it as an emergency pack in my purse, but this is not a heavy medication takers type pill organizer.

You know you are a Spoonie when…

The “large” medication organizer is to small!

Ps

You know you are a Spoonie when…

You order medication organizers with birthday money!!!

This blue stuff…

So I couldn’t find an ace bandage small enough to do what I need it to do, but this blue stuff was available.

My elbow keeps trying to hyper Extend and the pain makes me swing that arm wildly uncontrollable on accident. So I got this blue tape stuff and wrapped my elbow. Ohhh the relief!

At first I wanted to find out what the deal was with the hyper extending of certain joints, but the more I talked to a friend about it and I did the research from links she sent, I don’t want a diagnosis! If this blue stuff helps, I’ll just stick to using this.

Ignorance is bliss, yes indeed it is. As long as things don’t get worse.

Now, just to figure out how to wrap a hip! 😂