30 Things About My Invisible Illness You May Not Know

Invisible Illness Awareness Week is coming up. Both images below link to the source, a site dedicated to raising awareness for many invisible illnesses.

1. The illness I live with is: Idiopathic Intracranial Hypertension (IIH) & Pachymeningitis
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: 2008
4. The biggest adjustment I’ve had to make is: Coping with daily headaches while raising a young child
5. Most people assume: That it can be fixed/it's "just"  a headache
6. The hardest part about mornings are: getting out of bed with the pain in my head
7. My favorite medical TV show is: ER/Grey's Anatomy
8. A gadget I couldn’t live without is: Tablet/E-Reader
9. The hardest part about nights are: Trying to get some sleep
10. Each day I take 20 or more pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: have tried acupuncture and massage therapy wtih no success
12. If I had to choose between an invisible illness or visible I would choose: something visible that has a cure
13. Regarding working and career: I haven't been able to work since I started having symptoms, just after graduating from 2 college programs. (Computer programming and Information Technology Support Services)
14. People would be surprised to know: the pain is worse than the worst headache/migraine you've ever had, I deal with the pain using over the counter medications which only lessen the pain, they don't stop it.
15. The hardest thing to accept about my new reality has been: there is still no cure for the pain that I live with daily
16. Something I never thought I could do with my illness that I did was: have a child in 2009
17. The commercials about my illness: I haven't seen any commercials regarding IIH
18. Something I really miss doing since I was diagnosed is: working
19. It was really hard to have to give up: a regular pay cheque
20. A new hobby I have taken up since my diagnosis is: baking cakes Check them out! A Piece of Cake
21. If I could have one day of feeling normal again I would: spend the time doing things with my daughter that I haven't been able to do!
22. My illness has taught me: take each day as it comes and try not to plan too much, but make the most of the better days.
23. Want to know a secret? One thing people say that gets under my skin is: "Why can't they just fix it!"
24. But I love it when people: understand that I can't always be there for whatever event is going on. I have to take each day as it comes and go from there.
25. My favorite motto, scripture, quote that gets me through tough times is: We love you Mummy! (from my 2 girls Krystal (27) and Rachel (6) )
26. When someone is diagnosed I’d like to tell them: enjoy the good moments when you have them
27. Something that has surprised me about living with an illness is: the number of medical personnel that have no idea about IIH. 
28. The nicest thing someone did for me when I wasn’t feeling well was: take my daughter for a day so I could rest.
29. I’m involved with Invisible Illness Week because: awareness needs to be raised for the number of patients out there that haven't been diagnosed yet, and to increase understanding both privately and professionally for those already facing this condition and for those to come behind us.
30. The fact that you read this list makes me feel: happy that I've been able to raise some awareness in at least 1 more person. Thank you for taking the time to hear what I've had to say! 

Raising Awareness

I have recently been doing some research regarding IIH, primarily looking for information based in Canada as there are a number of Canadian patients on the various boards I've visited on Facebook and I frequently see the comments made that finding information that is Canadian based is non-existent. I know from personal experience, the awareness of this condition is minimal even in the medical community especially when distanced from the  neurosciences department in Hamilton.

Most information regarding IIH comes from the Intracranial Hypertension Research Foundation, based in the US and community pages on Facebook where I have noticed references made to support organizations in the US, Great Britain and Australia but no local resources for Canadians.

Google searching Intracranial Hypertension Canada comes up with the following results, primarily a medical journal (which is beyond the comprehension of most patients) and a couple of chiropractic articles referencing the condition.

I had found some information on the braintumour.ca website but currently that information has been moved and links are no longer working.  I have been in communication with them to get that fixed as our resources are minimal to begin with. Rhian's story shares her fundraising efforts for brain tumour awareness in Canada.

SEPTEMBER IS IIH AWARENESS MONTH

If you share one post from me... please make it this one! Raising awareness of IIH is VITAL as you will discover reading this post!

A little more follow up on my hospital stay back in April/May.  I was referred to yet another neurosurgeon since the surgeon that placed my shunt seems to have disappeared or, as I keep getting told, "is on leave". 

My shunt was tied off during my last hospital visit and on August 18th it was opened up again. I was experiencing symptoms of high pressure with the shunt closed, my head was whooshing all the time, more so if I bent forward to pick something up or anything that caused me to strain.  I still have headaches 24/7 but when the shunt was tied off, it was particularly worse as it would not ease with medication or positional changes.  The CSF was building with no where to go.  

When the shunt was untied, those symptoms disappeared almost immediately. I do continue to have headaches 24/7, but I can get minor relief by sitting upright and taking over the counter medications. I am waiting to book a follow up with the NS now that the sutures have been removed, and I am waiting on a referral once again to pain management.  I am hoping that something comes out of this visit as I do have something else going on.  I can't touch my head anywhere in the vicinity of my shunt.

Any contact with the bulb or catheter in my head causes what feel like nerve flares. I get sudden, severe pain throughout my head, especially across the back of my skull.  I also get strange sensations down the left side of my back at random intervals (not related to touching the shunt), at times I'd swear there is something crawling along my spine but there is nothing there.


I visited a local walk-in clinic to have my sutures removed.  When I was with the nurse who was taking my background information, she of course asked if there were medical conditions to be listed. I started with the typical "I have idiopathic Intracranial Hypertension, and pachymeningitis..."  she gave me a look and said "I'll just put hypertension".

I had to tell her that they were not the same thing at all and that it had to be listed as Intracranial Hypertension or at least entered on the chart as IIH not hypertension, definitely a true indicator of the importance of September being IIH Awareness Month.

Most medical staff have  not encountered this condition and all they hear is the "hypertension" part of the condition and automatically record it as "high blood pressure", not realizing that it is actually high cerebral spinal fluid pressure in the skull, certainly 2 very different conditions!

I find it of interest to realize, there are IIH foundations world-wide.  I've linked to a couple on this post, but I have been unable to locate a similar organization in Canada!

The most relevant post I could find was from the Canadian Cancer Society, indicating the cause of the increased pressure from a brain tumour. This is an accurate description for someone who does have brain cancer, but misleading for those of us with IIH as the above image from the I have IIH Foundation shows the comparison between the two conditions, the key difference being a brain tumour can be cured, IIH CAN NOT be cured.

For awareness month, many are creating videos such as this YouTube video to share details of the condition with friends and family.

Australia has it's own division of IH support.

I have this blog to share my experiences with this disease in the hopes that it will be shared to help spread awareness. 

Added a new cake to my cake page. 

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