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.
    

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.



 

Depression

I grew up hearing a good bit about depression, I had family members who suffered with it.  I'm familiar with the bursts of tears, the overwhelming 'what ifs', the desired escape from everyday tasks and the wild cycles of fearlessness that can tumble a family head over heels on the cycle of depression.  What I never realized, until recently, is that there are many symptoms of depression... 

• Lethargy - I'm just tired a lot, fatigue is part of my condition
• Trouble sleeping - Its just fatigue and with the pain levels I can't really rest
• Apathy - I'm still grieving, feeling lost
• Sadness - Again, I'm grieving... I've been through a lot lately.
• Irritability - I'm grieving and in pain, so I'm a little on edge sometimes
• Detaching from friends - well when I'm hurting like this I really don't want to actually do things.  Plus I'm majorly broke - all these meds aren't cheap!
• Appetite and Weight - That is none of your business, but yes I've gained a bit of weight...
• Pain - Hello I have Fibro, Lupus, Diabetes, PCOS, Asthma and Arthritis - aren't you paying attention?  

The problem comes in whenever you have overlapping diagnoses...  Is depression a side effect of an autoimmune disorder?  Or is depression its own sickness that leapt on to the straw piling on the camel's back?  You can see how it can all blend together... 

I have been telling myself for a long time now that I'm not depressed.  I'm fine, just tired.  I'm dealing with everything and just resting.  I'm not depressed, I'm not suicidal and I don't sit and cry buckets all the time.  I work full time for crying out loud.  I'm not detached, I'm broke - there's a difference.  I'M FINE!

Well maybe... I mean, that.... That sounds about right.  Shit, maybe I am depressed.

Vitameatavegamin

Every time that someone approaches me about vitamins or asks what vitamins I take, this is what goes through my head.  While it does make me smile, it also helps me remember that - despite the nasty taste, vitamins can give positive results.  

People often ask me what vitamins I take and when I take them, so I thought I would retouch on the list here.  

• B-12 - morning (Major energy!!  Take that fatigue!!)
• CoQ10 - morning (Energy!  Take that fatigue!!)
• Vitamin C - morning (Energy!  Take that fatigue!!)
• Calcium - night (and it helps prevent muscle cramps)
• Biotin - night (pretty hair and stronger nails)
• Vitamin D - night 
• Mega Red 3 Krill Oil - night (generic)
• Melatonin - night (This is what good dreams are made of!)
• Multivitamin - night
• Probiotic Acidophilus - Is this considered a vitamin?  I take it at night too.
• Zinc - night (strengths immune system)

Yes, that is a lot of stuff!  But it helps me function and move (and have the energy) to work, play with my niece, and actually shower every day. lol   You should see it in combination with my scripted medications!  Yes it gets expensive, but I had to make a decision about what truly matters to me... And, right now, it is having the ability to life life the way I (realistically) chose to.  

Although my ultimate choice would be to be sipping cool pineapple juice on the beach of some beautiful secluded island, while my feet were being massaged by hunky men and the shore was lulling me to sleep.  Alas, that is not possible... but if it was, with my luck the sound of the waves would just make me need to go pee.  :-/  :-) 

Important: All of my vitamin choices 

have been approved by my Care Team.  

Please do not begin taking anything without 

first consulting your health care provider.  
Thank you. 

The 4-1-1 on Supplements

I have to admit that I never really took any over the counter supplements until I started getting sick.  I have many healthy friends who take vitamins, mineral boosters, and various other supplements to help maintain their health.  I know even more chronically sick individuals who rely heavily on their supplements to have the best day possible.  This morning as I was checking my email, I ran across this Yahoo! Video and thought it was interesting. 

Or if you are unable to watch the video, you can read the article here.

Luckily, when I first started taking vitamins and supplements, I was going to a holistic doctor who helped me ease into this world of nutritional additives slowly.  I only take a few, but I have been taking them for a while now and definitely can see the difference they make. 

Here is my list:

1. CoQ10 - helps give me energy during the day, also good for my heart.
2. B-12 - helps give me energy long term.
3. Magnesium Oxide - a prescription that helps with my asthma.  
4. Centrum's ProNutrients Omega3 EPA/DHA (mini gels) - heart, eye, and brain health.  I take these because I rarely eat fish.
5. Vitamin D - I am a major sunscreen user, every inch of exposed skin is protected from the harmful rays - but that also seals out much needed Vitamin D.  Your doctor can run a blood test to see if this would help with chronic pain and how much your body needs. 

What do you take?

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... 

Who? Who? Who?

I need this on a t-shirt today.  Between the tests this morning making me sick (upper GI and a ton of blood work) and my fibro fog kicking in (who are you talking about? what? who?) - my day may go easier if I just pretend to be an owl.  I wouldn't mind being propped up somewhere safe, sleeping the day away...

I've had a history of not keeping meals down for a long time now, at least a few years... At the time, I was told it was a combination of my fibro and stress.  Now the doctors are not so sure anymore.  That's why I needed the upper GI done - but I got so sick during it that they had to cancel it!  I hate being sick like that in public but it was oddly satisfying... The x-ray tech was giving me one of those looks - you know the ones we get when someone thinking "yeah right you aren’t sick you are just lazy".  Except her face said "yeah right, a fat girl that can't keep food down. Funny."  So in that sense, even though it was embarrassing, I'm kind of glad that I proved her look wrong.  Then again, the hang-over feeling afterwards - I'm not so sure it was worth it.  (Secretly I will say that it was but I don't want to appear catty.) 

So all of that mess for nothing.  Then the doctor also ordered a ton of blood work (8 vials of blood!) and I don't do well once they take 4.  So I was sick again. 

<sarcasm> So far, this Monday morning is off to a "great" start.  </sarcasm>

Maybe I'll just look for a perch in a tree somewhere out back... take a nap :)

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.

How Aware Are You?

I cannot believe it is already October!  

This is my favorite time of year!  I love how the weather cools and becomes crispy in the mornings and at night.  I become hypnotized at how the sunrises and sunsets take on an eye-catching quality that can take my breath away.  I enjoy the sounds of local football games going on, distant music of the marching bands performing at half-time and hockey season is in full swing!  

On a personal note, I love that I can wear any color of polish this month and no one blinks an eye!  I love to experiment with my nails, hair, etc and this time of year is the perfect opportunity to do just that!  

Another thing I love about October is that it is truly one month as busy as I am!  


No really, think about it.  Even without looking at Fall Festivals and Halloween (or End of the month parties), October is packed with opportunities to spread awareness and educate ourselves on things that are very important.  

October is Breast Cancer Awareness. 

I am a major advocate for women to become proactive and take an active stand when it comes to breast cancer.  Monthly self exams can and will save lives!  

Also, not many realize that October is also Domestic Violence Awareness.  

So many people say "I won't be with a man who hits me" but so many people do not realize that: 
    1.  Domestic or Dating Abuse does not start physically.  
    2.  There are men who are also victims of domestic abuse.  


Oh wait, that isn't all... We also have National Employment Awareness, National Down Syndrome Awareness, Sudden Infant Death Syndrome Awareness, National Physical Therapy Month, October is also Home Eye Safety Month.  

October 2 through 8th, 2011 is Mental Illness Awareness Week. 

October 23rd through the 31st is the Red Ribbon Week - which is majorly important to us Spoonies!  The Red Ribbon campaign is a way to take a stand against substance abuse.  


Whew!  That is a busy month!  But wait, I'm not done!  I'm saving one of the ones that I feel is extremely important for last.  This one effects all of us spoonies, no matter what our chronic condition is.  

The last October Awareness that I want to mention spills over into November but it is hugely important and something that many of us experienced spoonies advocate to new people who are being diagnosised.  Know your medications/supplements!  Celebrate National Drug Facts Week by educating yourself on what you take, why you take it, what is its side effects, and how does it work with other things you take.  This is important to remember, not just from October 31 to November 6th, but all year long! 

So this October, take some time to reflect, educate, and spread a little awareness of your own!  

Happy October!

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. 

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. 

Fog with a side of Hurricane

Sophia Petrillo isn’t the only one who has gotten more intuitive about the weather.  I have been having a flare-up over the last few days, muscle pain/cramps, joint stiffness, and swelling.  I have had worse flares, so I am still thankful that I am off work this weekend so I can rest.  Even with the muscle cramps that bring tears, I am still very blessed.  Especially considering that this weekend, as I am writing this, Hurricane Irene  is having her way along the North Eastern seacoast of the US.  The people receiving her wrath are in my prayers, my heart goes out to those families who are losing everything...

I have been in a hurricane once in my life, and trust me it was more than enough of an experience.  Granny and I were on a cruise ship near the Bahamas when Hurricane Wilma hit in 2005.  What surprised me more than anything about the storm, wasn’t the force of the rainy wind or the violent way the ocean threw the boat around – but the drastic drop in temperature!  At this point, I had not experienced the traumatic event that triggered my fibromyalgia, so I was chronic illness free!  Perhaps I should have taken the storm interrupted vacation as a sign, because shortly after, my life changed forever.

Growing up, my grandparents were able to predict the weather.  Later on in life, my Dad was always accurate when it came to spotting a cold front on its way here.  As an adult with a chronic illness, I can put my hat in the ring for knowing when changes in temperature are approaching and not only can I smell the rain, I can feel it ten miles away. 

Sorry this post is a little rabbit-chasing, but this flare has definitely brought its share of brain fog. :)

Natural Pain Relievers

Over the last few months I have began to look forward to the newsletters in my inbox from IVillage.  This morning, I was very happy to see an email about relieving pain naturally.  I'm up for anything (at least once) so I thought I would browse through and share some of the highlights here.

The first option was Yoga for pain relief.  The article mentions a lot of different types of pain, from hangovers to pms to sinus pressure.  For me, what helps the most are the anxiety breathing and backache poses.  I'm not flexible AT ALL (picture the Tin Man when he started getting oiled, that would totally looked like me if I stopped coloring my grey!) and yet I found a way to do these positions comfortably.   


The next option was 20 Natural Pain Remedies from your Kitchen.  I have to admit that at first I wasn't too impressed with what it offered, but when I seen that ‘fresh pineapple daily can cut painful bloating within 72 hours’ that definitely got my attention!  As anyone who takes Neurotin will tell you, I'm bloating up like a fish!  And I love fresh pineapple, so if it works it will be win-win!  


Another thing that I do to ease my pain is try to distract my mind away from it.  It isn't always easy.  The newsletter had an  article, Surprising Ways to Ease Pain, lists some of my favorite methods of  redirecting my attention away from the pain.


What do you do to ease your pain?  Do you have any natural or mental tricks?  Please share your experiences in the comments below!
  

-beep beep- Coming Through!

Most people who know me professionally will tell you that I am always busy and rarely find myself with very much downtime. Those who know me personally know that I struggle with fatigue. I think that is one of the Fibro symptoms that is the hardest for me to navigate around. Before I started seeing my current PCP (Primary Care Physician) I was going to a doctor more focused on holistic treatment. He suggested that I experiment taking Coenzyme Q10 or CoQ10. At the time, I didn’t try them because I had other things going on that I felt would make it hard to judge if they worked or not. 


 About three weeks ago, I touched base with my current Physician- she said she did not feel the supplement would take anything away from my current treatment plans. So I picked up a bottle of CoQ10 liquid caps and thought I would give them a whirl. 

While filling my pill boxes for the week, I added one 100mg CoQ10 pill to each of my morning doses. I could tell a difference almost immediately! Within 30-40 minutes of taking the pill I began to feel more awake and within an additional hour I had more energy than I have had in several days. It was as though I had drunk one of those 5 hour Energy Shot drinks again – except I didn’t crash (mentally) afterwards at all and I didn't talk four-hundred words a minute either! lol  I did, however, get very hungry several hours after taking the supplement. Over the last three weeks I have learned that if I eat a good breakfast before taking the CoQ10 I don’t get hungry after.

For me, taking CoQ10 works. I can feel the energy boost for a while too, if I start to pick up my activity later on in the afternoon I can feel that energy surge slowly filtering through my body. I’m kind of kicking myself for not trying it earlier.

As with anything else discussed on this blog, please touch base with your Doctor or Health Provider before altering your routine, medications, etc.

Quick Update

As you can see, it's been a while since I have been able to truly sit down and post.  It's not that I don't want to, its just that by the time I have a few moments to share my life with ya'll - I'm too exhausted to think.  Literally.

 

Please accept my apologies, but between fibro flareups, falling victim to a pain patch, my Mom being sick, staying swamped at work (got that promotion!), and fatigued beyond my wildest imagination... my cup is long past overflowing.

I will be back with ya'll soon (I hope!) or at least as soon as possible.  Thank you for understanding and your patience. 

And thank you, readers, for your continued support! 

Vitamin D and the weather

The weather is dreary and cool, it makes me ache just enough to be uncomfortable and to encourage me to be very sleepy.  I have learned along the way that I need a little bit of sunshine every day, about twenty to thirty minutes worth of the sun's warmth does wonders for my mood and energy levels.  In the beginning I thought it was the general warmth and the enjoyment of a beautiful sunny day that did the trick, but the more that I have studied I realize it is probably about the Vitamin D.


Vitamin D comes into play in maintaining balance and general good health/moods.  My sister, Jennifer, for example takes a supplement of Vitamin D because she doesn't tolerate the sun well at all.  Using sunscreen, I am able to spend enough time in the sun to satisfy the amount of Vitamin D that my body is craving.  That being said, I tend to experience a few side effects of Vitamin D from being out in the sun for too long.  Vitamin D is also available through dietary measures, eating things like eggs, different kinds of fish, and some cereals.  So my advice to everyone who wants to experiment with Vitamin D and its effect on your mood/pain levels is to take it slowly and see what works for you.  


A little sunshine, when experienced with proper sunscreen, never hurt anyone!




Read more about Vitamin D here:

• Vitamin D: The Amazing Sunshine Vitamin
• Vitamin D Information
• Foods high in Vitamin D
• Vitamin D for Fibromyalgia