Side Effects of Diamox

A week ago or so, I had a lower lumbar puncture done to release the pressure of the build up of spinal fluid on my brain (PTC or IIH).  Apparently my pressure levels were much higher than they should have been so the Doctor changed my dose of acetazolamide - which is causing my body to expel fluids in.... a different fashion than it did previously.  Not to be gross but it gives me really bad diarrhea.  I spoke with my doctor and he said that it could be my body's way of pushing out more fluids/toxins or it could be a side-effect.  So I've been reaching out on twitter to see if anyone else taking Diamox has the similar issue.  

If you have - or even if you haven't - please hit up the comments and let me know.  

Thanks.
    

Tap my what?!

I just got out of the hospital and am slowly recovering.  I'm not exactly sure what was or is going on, I'm still kind of out of it. 

What began Sunday night as the worst migraine of my entire life, a #16 on the 1-10 pain scale, dry-heaving vomiting and extreme dizziness ended up with me being admitted to the Hospital with Idiopathic Intracranial Hypertension or Pseudo Tumor Cerebri, which I will refer to as IIH in the labels section of my blog. 

I met an excellent Neurologist who has agreed to take my case.  Under his recommendation, I will have a new Eye Doctor that will need to see me every two months to monitor the pressure via my dilated eyes.  (I'm not looking forward to that, I dislike having my eyes dilated!)  (Does anyone else who has sugar issues have a spike in blood glucose during/after having eyes dilated? Or is that just me?)

The treatment is a lower lumbar spine tap type thing - which is very painful!  Oh and a 1000gm daily dose of a heavy duty diuretic that gives me muscle cramps will keep the fluid from coming back as quickly.  But according to the Doctors, another lumbar puncture will be in my future. :(

Anyway, fast forward several days, and here I am.

So I will be researching and learning as I go, much like we all do from time to time. 

Please keep me in your prayers/good thoughts.

Thanks!

 

What the Heck?!

I'm stressing.

No wait, I am freaking out!!

My job is doing away with our health insurance and forcing us to pick up ObamaCare.  I don't have a choice in this, so normally I don't sweat things I have no control over... but this is my health insurance.  This decision will dictate how my health is managed and could change the course of my quality of life.  If I pick the wrong plan, I could lose more than my doctors - I could end up with some med school drop-out who believes Fibro is imaginary! 

I've already been to one crackpot who told me that my "issues are depressive in nature, Amber, you need to get yourself married and have children".  He explained that the constant pain was my "body rebelling against my choice of a selfish lifestyle because I should be having children by now" - btw he meant being single.  Going through that once was more than enough for my lifetime - thankyouverymuch.

I've done my part!  I have found a way to juggle chronic pain, endless fatigue, and never ending appointments so I can maintain a real life full time adult job with benefits.  And now, because my benefits don't match up with the new government standards - I'm losing them.  Not only am I losing those benefits that I have worked my @$$ off for - and sacrificed so much of my quality of life to be able to maintain - but I will be awarded some crackerjack healthcare option.  Oh and that isn't all, assistance will be based on your income level.  That makes sense in some instances, but what about those of us who are barely making it on what we make??  So now, not only does my taxes go to support other people who are living high on the hog from the government assistance I am providing them - but now I have to struggle to pay for my own health care.  My cost will be around $300 a month - PLUS copays!!  W-T-Heck Obama?!  I can't afford it - HOW am I supposed to afford it?  And the government will not help me pay for this insurance because I am a responsible adult and do not have children I cannot support and because of this very job that is paying for all of their government aid - I am getting screwed.  Screwed for being a law abiding, hard working, barely-living-within-my-means American.



 

Worry About Yourself.

I am definitely having one of those days!  I just want to tell everyone "No thank you, just worry about yourself."  I'm not referring to friends or family members who genuinely care about me and are sincerely checking on me - but for everyone else...  

I'm fine.  Family is fine.

Work is good, just keeping me really busy.  

Thank you for asking.  

Worry about yourself, please.

It's not that I don't care that others care or I mind - its just.... I don't have time to stop and think about how I am and I don't have the energy to try to put it into words so someone else can comprehend.  I just... I do better if I can just keep going.  One foot in front of the other, one day after another.  Healthy or not - I don't know yet.  But thank you for your concern, just worry about yourself :)  

Untitled.

I know that it has been a while since I posted regularly.  I would love to say that I'm doing well, just busy with how wonderful life has been. I would love to say that I've met some fabulous people and have spent the last few months secluded away on a private beach. The last few months have been both the longest of my life and gone by faster than I ever imagined. 

Everyone appears to have moved on but I can't...  People are getting married, having babies, moving, getting promotions, etc... And feel like I'm still sitting in that cold hard chair in the waiting room, trying to explain to my Aunt that the doctor just said that Mom may not make it through the night...  I'm trapped in that moment of shock and heartbreak. 

Thank you to everyone who has emailed, called, texted, and checked on me.

Mental Beach Getaway

After an eventful few days, I need some serious down time... This is my favorite youtube video that helps me relax and drift away from the world.  

Not even my exhausting pain can reach me here.  

While I am positive that an actual trip to the beach would work wonders on my aches and fatigue - this is the next best thing... Plus I don't have to wear sunscreen! :)

zZzzZzzZzz

I have been so BLAH! this week, I've been struggling with a fibro flare-up and majorly stressed at work.  It's barely Saturday afternoon and I am so exhausted I could easily sleep until Monday.  


I will wake up for a few minutes then the next thing I know, I'm waking up again.  


I think I'm developing narcolep-zzzzzz.  lol 

This animated picture made me laugh but at the same time... I definitely know how the sleeping cat feels!

Fibro Fog Strikes Again

Oh yeah, it's been one of those days...

Now That We're All Booming...

This has got to be one of my favorite scenes from the Golden Girls.  For anyone who hasn't seen it, the Girls are babysitting for a friend and the baby refuses to go to sleep!  So Rose voices one of her many St. Olaf ideas on how to soothe the crying baby.... This is her plan in action. 

I have been having a lot of problems sleeping lately.  I'm not sure what is going on or how to even explain it... but I am confident that others who are either chronically sick or grieving can definitely relate.... Unfortunately, I don't have any tricks or tips on how to handle these sleepless nights....  I imagine being serenaded by the Golden Girls might not put me to sleep but I am confident it would make me smile... and maybe feel less alone during these isolating nights... 

Grief and Fibro

Mom passed last night, but Hospice didn't come 'pronounce' her deceased until the wee hours this morning...


I'm tired... numb... and in a hazy surreal state... mainly, I'm just tired.


Grief is hard enough to handle without my body going into a full rebellious flareup.  Hoping fibro waits until after the service to hit.

=(

... the night got much worse... Mom was admitted into the hospital and they are saying she only has a few days left... I know that only God knows when our time is up, but... 


Stress stress and more stress.


Please keep my family in your prayers. 

Spoonie Math Equation

Here is the word problem.


A woman named Amber has fibromyalgia, lupus, and several complications of that combination.  She has a stressful job where she is responsible for numerous things.  Amber also has a sick parent who she is taking care of, with the assistance of her sister.  Amber and her family live in Tennessee, which is having a major shift in temperatures and weather - dropping from 80* one day to 45 at night, mixing in some cold rain and high winds.  What happens next?  


Did you guess a series of intense asthma attack that propels Amber into a very rough chest cold and laryngitis?  


I didn't either, but that is what happened.  


The string of asthma attacks will take a few days to get over, but thankfully I have my inhalers, a nebulizer, a steroid refill, and some mixed Albuterol solution.


Sometimes being a Spoonie is tough, looking around your house at the embarrassing collection of medical equipment and medications... Other times, like right now, it is like having access to your own private pharmacy!  Which has definitely saved me a ton of money on copays!! 

Don't worry about me!  I'll be back to blowing down houses in no time :) 

Perco-huh?

Like many other in Spoonieville, I am having a rough flare up week.  Tennessee's temperatures have dropped pretty drastically and we have had several days of cold rain.  Luckily, my Aunt turned me onto Percogesic, which I can take at work and it brings just enough relief that I am still able to function.  I was speaking with a Nursing friend who laughed and said that percogesic is nothing more than aspirin and benadryl, however I am not knocking what seems to be helping me right now.


So if you are curious what is currently in my survival kit?  It would be a container of Percogesic, a tube of Aspercreme, and my fake smile that I plaster on as I pull into my job's parking lot.  

I keep reminding myself that I am very blessed to have a job to have to force-a-smile through, because it provides me with insurance for treatment and money for survival.  So all in all, I am a truly blessed spoonie.

Video: What Fibro Feels Like

Thank you for sharing this video, 

it speaks volumes of how I feel! 

Not by Strength - but by Perseverance

In the confrontation between the stream and the rock, 

the stream always wins -
not by strength 

but by perseverance. 

- H. Jackson Brown

I've heard this expression a dozen times but this morning something inside of me clicked.  The rocks of my path lately have been holding me back, when what I need to do is relax and allow myself to flow around them.  Yes the barriers may slow me down but eventually I will get around them... 


So now I am going to try to breathe through the stress, relax during the drama, and imagine myself - my true self - flowing around these issues, skimming past the flare up pains, slipping past the work headaches... to pool back into myself on the other side... 


Will keep you posted on its success.  

It's a bird, it's a plane, its my Chiropractor!

A new pain has struck, bad #10 on the scale of pain.  It could be a fibro flare-up because of weather changing.  Emergency Medical Personal thought I was drug seeking.


Even my own Doctor wasn't sure how much of this is fibro and what is new.  Sometimes I'm not sure she believes in fibro or if she believes it is all weight related.  


I cried myself to sleep several nights from the intensity of this pain.  I can't walk unassisted, barely stand up enough to see where I'm going.  Yet am told it is "part of fibro".  I know enough about fibro to know that this is very different. 


Pain pills numb my brain enough that I can sleep a little.  It doesn't really ease the pain as much as it makes it easier for me to mentally disconnect from it. 

Finally my Chiropractor figured it out!  God bless him!  He discovered that I have pinched a nerve in my lower back.  He worked on it some and for the first time in a few days, I have non-medicated relief.  Prednisone, cold packs, and his TENS unit to the rescue!  With any luck, tomorrow I will be able to go back to the office :)  


It is another day I thank God for the support of my family. 

Feelin' Puny

Yuck, I hate being sick. 

Combination of steroids to ease fibro/lupus 

pain, an ear infection resistant to antibiotics, 

and my condition's precursor for Diabetes... 

Oh and don't forget to multiply that by the power of 

brand new sugar meds/insulin...

and I'm very sick... 

Comments encouraged.

Prayers appreciated.

Thank you for stopping by to read this. :)

New Changes

New Doctor

New Meds

New Insulin

New Sickness

Equals a New Misery lol 

I am blessed that I have insurance to see the new Doctor. 
I am blessed that I am able to purchase my new medications/insulin.
I am blessed that I have a job that allows me to go to my doctor appointment.
I am blessed that I have a family to help take care of me. 
I am blessed, even though I am sick. 
I am blessed to be able to breathe. 
I need to remember to breathe. 

Extra Extra - Read All About It!

The headline should read:  

Fibromyalgia hits Amber!

Yes, that would make me the person stuck under the house.  No that doesn't make me a bad witch, but I am less friendly on higher pain days. 


This time around, I have been more emotional than I have been in previous flare-ups.  I have been stressing much easier over small things that normally would not even phase me.  In the past, my medication helps me sleep a little less restlessly, but this current flare-up is an exception.  


The Fibro-House may have fallen on me, knocked me down, and delayed my plans of world domination (haha) but as you can see in the picture, I am still ROCKING those ruby slippers!  My condition may be able to take me down or push me around, but I will continue to sparkle and shine.... even if it is a little less brightly. 

Hopeful

Hope is like a bird that senses the dawn and carefully starts to sing while it is still dark.  - Anonymous

Not feeling that great today, intense muscle pain/cramping, stiff joints, dizzy and headachey.  Still hoping that the weekend will improve, tomorrow I will feel better... I hope.