Friday, May 18, 2018

It's been 2 years.

They say time flies when you are having fun. And boy isn't life fun? I really had no idea how long it had been since I had posted. 2 years! I wish I could say I was miraculously healed, but as we all know that only happens in movies. I still see the neuro opthamologist every 2-3 months. They still do a visual field screen and check my pressure. I am still on Diamox twice a day. This is my life. Some days I can really feel the pressure and it causes headaches and auras. Other days I almost (read that as ALMOST) feel normal. I will never feel 100%.
I will always have limbs that fall asleep super easy for no reason (or at least give you the sensation of the pins and needles). My Raynauds will show up out of nowhere for no reason at all and I will look like I have dead person hands. I still can't lay on my stomach because I will always get the drowning sensation. When my pressure is up i feel so out of it when I walk. But no one knows when these things are happening to me. I just smile and continue on like the not sick people in my life.

But my normal is my normal and I am living with it the best I can.

Monday, August 8, 2016

No meds

I have been off all medication for a couple of weeks now. I go back to the neuro-ophthalmologist on Sept 1 to see how I am doing. The first thing he will ask is, "How are the headaches?" This is such a hard question to answer. Yes I have had a couple of headaches (super manageable) but still happening. I told hubby this and he said,"what if they are just you know normal headaches?" (In my head I am thinking, there is no such thing for me.) After all these years, he still doesn't get it. Another super frustrating thing about a chronic illness. It is so hard for those without the illness to understand what is really going on mentally, physically, emotionally.

Anyway back to the dr, if I tell him yes there have been headaches, back on the meds I go. If I tell them there haven't been and my eyes look good, I stay off. (My wallet will thank me!)

That is just my short little update until Sept 1. BTW I no longer like the taste of any sodas. (I have always been a Diet Coke addict, guess not anymore)

Wednesday, June 29, 2016

Could I possibly live medication free?

As many of you know going to the Dr. is such a pain. I have visited the neuro-ophthalmologist every 2 months since August 2014! Every time I go, 2 things happen. I get a vision field screening test and the Dr checks my optic nerves for swelling. Over the last couple of appointments by nerves have looked good so he has slowly been lowering my Diamox dosage. At the height of all this IIH madness I was taking 6 pills a day. I am currently down to 1 for the next month and then off completely for him to recheck. This is the first time since being diagnosed with Chiari in 2007 and now IIH I will be completely off of all medication. This is a blessing but also super scary.

I honestly don't know how to live my life without medication. For too long, prior to IIH, I had been on Topamax. I mean on it so long that I enjoyed the tastes of cokes, and other things people couldn't get past with this med. But now that I am almost completely off meds my old taste buds are coming back and things that used to taste great to me, don't anymore. (Great for the waistline) It is just so weird. The other thing I am more worried about than anything is, I don't have a neurologist anymore. Mine retired in December of 2014. It didn't matter at the time because of my visits to the neuro-ophthalmologist, but now what am I supposed to do? What happens if heaven forbid everything starts "flaring up" again. UGH having a chronic illness really does stink!

Monday, January 26, 2015

Great article I read about chronic illness and disability!

"Close the door, please."

It's usually a pretty small request, but if there's one thing you don't sign up for when you're admitted to the hospital is privacy. Like, forget it. Finally get to sleep? Wake up! Time to take some blood! Have to pee? Someone's knocking on the door making sure you're not unconscious on the toilet. Trying to interview a celebrity during the nurses's shift change? Good luck.

"And so what about being on set? Did you and the rest of the cast have a lot of chances to get to know each other?"

My IV keeps beeping and the little screen on its pole keeps flashing the words "LINE OCCLUDED -- FLUSH LINE." But no one is flushing anything while I'm still on a private line with a primetime celebrity. Besides, I think, if I just hold my left hand really still it will clear up by itself. Until then, I'm frantically pressing the "Silence" button every three and a half minutes and holding the phone between my ear and shoulder while trying to type everything verbatim with one hand.

Hey, no one said working with a chronic disease was going to be a cakewalk. But compared to trying to win a case for disability when your disease doesn't include bleeding from the eyeballs or randomly losing your limbs, it's a breeze.

"How do you think your character has evolved since last season?"

If I'm going to be honest, I would say that I probably am a quitter. I probably did take the easier way out. When I was diagnosed with primary immune deficiency and dysautonomia -- diseases which complicated every part of my immune and autonomic nervous system -- I thought my career was over. I would have to rely on the system to support me for the rest of my life. And I was only 20 years old.

It was a little premature for retirement.

The nurse bursts in without knocking and starts to ask me if I need more medication -- I throw my IV'd hand up and mouth "CAN'T TALK -- WORKING" -- sheepishly lowering my arm after I almost jerk the plastic catheter out of my skin. She rolls her eyes and walks back out.

Anyways, applying for disability had been a nightmare. Even with a lawyer who worked pro-bono through one of the Immune Deficiency organizations. The paper work was overwhelming and the truth was that even with everything in perfect order -- I only had a miniscule chance of actually getting covered. Being hospitalized every other week for out of control symptoms doesn't qualify you for jack.

I spoke with a Facebook friend the other day who lives in Ohio. She's had at least six brain surgeries this year. She can't walk anymore and spends most of her days getting spinal taps to drain fluid from her skull. She was denied disability in December and needs to recoup financially before she can even think about trying again with a lawyer. So I'm not exactly sure who or what qualifies you for support, but the universe is pretty much giving her no options but to slap a band-aid on her scalp and start sending out resumes.

My interview wraps up with a lot of thank you's and apologies about my slow-typing. I hang up the phone and try to air the sweat out from underneath my arms.

Interviews kind of stress me out -- but only in the way that I'm totally out of practice when it comes to working with other people. For the past year and a half I've been working from home -- freelance writing articles, public relations copy, pitching stories all via email.

I've got a 90-percent response rate on return emails from editors. But between the brain fog from my actual disease and the residual cloudiness of my medications -- my tongue isn't quite as sharp as it used to be and I get serious anxiety about getting on the phone with anyone who I'll have to actually try to have a conversation with.

The nurse comes back in and starts pressing buttons on my IV. My line is filled with bright red blood, but with a few more clicks everything turns clear again. I sink back into my bed, making a mental note to add one of those travel-size sticks of deodorant to my hospital kit.

"Working when you're in the hospital?" The nurse asks. "You should take this time to relax and heal."

Which is like, totally zen and wholesome -- but I have a dog with food allergies who needs a specialized organic kibble. And my AMEX bill for last month? Let's not even go there.

It's different for the chronically ill. There are no sick days, no paid time off -- they are all sick days. There is no "welcome back, glad you're feeling better." There's just absence, and a whole lot of unemployment.

And after a while, you just get tired of wondering if today is going to be a good health day or a bad health day. So you make the decision to expect all days to be bad health days and start changing the design of your life to handle the impact.

Two story houses turn to one. Romantic date nights out become House of Cards marathons and Greek take-out. College and career stop looking like classrooms and boardrooms and start looking like Skype sessions and

And once I started working for The Global Genes Project -- an international non-profit focused on rare diseases -- I started getting stories just like my own from patients daily.

They were sick, but weren't getting the support they needed. I started wondering how many other patients on my floor were mixing flare-ups with full-time telecommuting? And when I asked the rare and chronic disease community for their solutions to life-interrupted I was admittedly pretty blown away by the response I got.

After doctors diagnosed her with an acquired brain injury, Encephalitis, from a mosquito bite, it took 38-year-old Becky Dennis a full 27 months to understand the impact of her health on her career. Just like me, she experienced the anxiety of interacting as a professional when her disease weakened her ability to communicate. It was a time in her life that called into question her creativity. She found ways to work around it.

"If I had to conduct a briefing, I scripted it out. If I had a business dinner, I brought a colleague and compared notes afterward to "borrow" their memory. I carried a notebook with me everywhere to jot down items I needed to remember. I scheduled meetings around my numerous doctor appointments, blocking my calendar to appear otherwise busy," remembers Dennis.

Crohn's Disease patient Lori Karpman was among the many who had to have a complete career change post-diagnosis.

"I was the President of my own chain of franchised restaurants called Zyng Noodlery," says Karpman who now works from home as a business consultant "I have a very successful business, but I have to be at home because I have stomach cramps every morning and often throughout the day and need to be near a washroom. My whole life has changed, and I have a new "normal" now.

The Global Genes series ushered in mountains of feedback from patients who read their stories and felt relief. Long lonely roads of disability and isolation warped in the possibility of a normal life. There were pieces to be moved around but what is that quaint little saying?

"Adapt or die."

I knew there must be a way to circumvent the symptoms of my disease -- just like anyone would supplement for a lack of education or experience. The trick was being persistent and aggressive.

Once you're a patient with a chronic illness it can consume your identity. You spend so much time and energy devoted to just feeling better -- you can't imagine being anything more than what you're struggling to manage right now. You think, I can't be a mom or a wife or an employee. You think, I can't do it.

But the plain, verifiable, quiet -- but rarely said fact is that people do. With technology being at it's most advanced it has never been a more possible dream than to not have to give up your life in order to manage your disease.

It's happening in the waiting room on an iPad in-between filling out insurance information. It's happening on a conference call on a treadmill in physical therapy. It's even happening to a girl in a hospital bed drafting up an article while waiting for an IV line to be reset.

Read more from Ilana at Let's Feel Better.

Wednesday, January 14, 2015

Why do I keep it all inside...

I know you have been left on the edge of your seats waiting for this update. To get you caught back up here is where I left off.

So I visited the Neurosurgeon who PTL says my Chiari is looking great! He doesn't advise surgery anytime soon, in fact he says, "It looks like to me your IIH is what caused the Chiari." WOW!!! All along we thought it was the other way around. Now if you have been paying attention to see that this nonsense has been going on since June! Back to the neuro opthamologist for him to do ANOTHER vision field test and to let me know if he will perform surgery on my eyes.

I have now visited him 4-5 times getting that stupid vision field test. I do have bigger blind spots than most people but his course of action is working. What is it you ask? I am on 6-500mg ER tablets of Diamox daily. Yes you calculated that correctly, 3,000mg a day! Many people cannot handle Diamox because it causes weird symptoms, when I first started my head itch like CRAZY!! I mean I thought I was going to do damage scratching my head. That is the only symptom I had, others have crazy ones! So fast forward to yesterday, January 13 I went to see my friend again hoping that he would say I could lower the dose or stop.

My main reason for hoping this is because in 2014 when my deductible was met I paid $10 for 180 pills! When I went to pick up this same prescription it was going to cost me (are you sitting down?) $454 and some change! What the What?!?! So I kindly asked the pharmacy to give me 27 pills to tie me over until I saw the dr yesterday. That still cost $71!

I get to the dr and end up having to pay $400 just to see him. Seriously insurance companies I have figured out the reason people are sick! They either can't afford the dr or if they can, by scraping together their money, they can't afford their medication! Such an ugly vicious cycle!!

So anyway I am still on the same prescription trying to figure out how I am going to pay the $450 to get it filled and will go back to the dr in 2 months and have to pay him $400 again......

Thursday, September 11, 2014

Ok So I know you all have been waiting.... Here is the complete update of my saga!

Tuesday 9/9 (AM)

7 years ago I was diagnosed with Chiari Malformation Type 1 (CM1). The good news is right now the herniation is stable but I still have symptoms. But 6 weeks ago I was diagnosed with Idiopathic Intracranial Hypertension (IIH). This is causing my optic nerves to swell and causing me to go blind. I FINALLY had an appointment with the neuro-opthamalogist to figure out our plan since I have both CM1 and IIH. Also this week just happens to be Invisible Illness Awareness Week, and Sept is Chiari Malformation Awareness fitting right....

I am attaching links to some important website regarding my diseases and would love for you to become more informed!

Tuesday 9/9 (PM)

The dr did the same tests as the previous opthamalagist. He said that the blindness wasn't too bad and he changed my rx to a slow release Diamox and the dosage went from 1000mg to 2000 mg. He was really surprised my optic nerves were as swollen as they were with the rx dosage I was taking. He wants me to go ahead and see the neurosurgeon to see what he thinks and see if it is my Chiari causing this. Plus I haven't seen a neurosurgeon in 7 yrs. After I see that dr I go back to this dr for another field test (checks for blind spots) and sees what the neurosurgeon recommends. So really I am back to square one which is waiting with no real answer. Blah!

And such is the vicious circle of our disease!

Wednesday, June 25, 2014

Updates after Friday and something to think about!

I know I said I would update after the neurologist but here is the abbreviated version. I am now getting another MRI Friday as well as going to the ophthalmologist on Friday. The true update will be after we see what those results show. More meds or headed to neurosurgeon....

But I saw this awesome post online today and I really wanted to share!!! ENJOY!!!!

5 Ways You're Not 'Living' With Chronic Illness
Posted: 06/24/2014 7:59 am

A fine line, ladies and gentleman, its what stands between living with chronic illness and being alive with chronic illness. I've straddled it a few times, but I've figured out some of what on the other side and here's what I know:

1. You're not living with a chronic illness if you're hunting for the why full time.

Is it because of a parasite? A bacteria? A cancer? Is it because you wore that blue dress last Tuesday? Is it because you stuck gum in someone else's hair that one time in second grade? There are an infinite list of possibilities as to why you could be sick. But after a while, and at least for a while, you've got to take a break from the endless hunt for answers and ask yourself, "How am I going to handle living with my disease today?"

There has to be breaks, balance, within the search for answers. You can't just live going from doctor to doctor. You have to even out the space in between with friends and work and family.

Because you can't hunt, you can't search, you can't question, and you can't get an answer for any of the whys in life until you've mastered feeding yourself, moving yourself, balancing your work, relationships and symptoms at the same time. I mean, you can throw all of those things out the window and just hunt while you lay in bed dying.

But we don't call that living.

2. You are not living with chronic illness if you're not working.

Don't panic. I'm not living under a rock, I know lots of people with chronic illness can't work conventional jobs. So I don't mean working in the 9-to-5 sense. I mean working in the "I have a goal" sense. Like my goal is to get enough documentation to get disability. Or my goal is to raise my kids as best I can despite my symptoms. Or my goal is to focus on my physical therapy so I can become more mobile each day. Or my goal is to find ways to work from home. Working is purpose. Do you have it?

3. You're not living with chronic illness if you're hating yourself.

Sure, it's super easy to slap a "defect" sticker on your chest and go cry in the corner. Hating yourself is about as natural as all the other symptoms of chronic illness -- weight gain, constant pain, fatigue -- but this is (maybe) one of the only symptoms you can wake up and shake off every day. Go to therapy. Learn to cope a little more every day. Making peace with your disease is something you have to do because...

4. You're not living with chronic illness if you're fighting it.

Can we clarify something here for the general population? Fibromyalgia is not part of the WWF. Chronic illness is not cancer. You don't "fight" it. You don't "beat" it. You don't make a voodoo doll out of it and start stabbing it with acupuncture needles. In the same way we don't use the word "cure" to mean "treat" we can't use the word "fight" to mean "deal with."

Chronic Illness is:

Coped with





Lived with



Managing chronic illness means developing strategies to assist you in moving forward with your life's greater focus with as minimal suffering as possible. Don't head-butt your disease, outsmart it.

5. You're not living with chronic illness if you are not moving.

We all linger in stagnation for a while. We get stuck in the mud. Blindsided by an unexpected diagnosis. We let the moment we need to absorb, absorb us. Life with chronic illness is just like any other -- a life full of obstacles. With pain, illness, exhaustion -- it's easy to sit down for a while and rest your body. It's easy to lay down and not get back up. But if you're not moving, you're not living. So even when the obstacles become too great, the treatment stops working, the doctors stop telling you the good news, even when you lose support, you lose sight of what you're moving towards -- you keep moving.

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