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. 

#‎ChronicallyAwesome‬  ‪#‎BlogSupport‬ 

Supporting a friend!

Sharing a post today from a wonderful little girl who happens to be a friend of Rachel's.  Indy is raising funds for the Murdoch Children's Research Institute in Australia.  Any research into illness is a good cause and worth sharing :)

Indianna's Step-a-thon 2015 support page

Neuro Surgery Follow up Finally

Finally got into see a neurosurgeon to follow up on my hospital stay back at the end of April.  I again have to say how great the staff at Hamilton General are.  A doctor came out to the waiting room to call me in, and her first words were "we've met before". She was the NS that performed the bedside lumbar puncture back on May 3rd, the only time we met, but she did remember me.

After a review of my case history and discussion of my current situation, she consulted with the neuro surgeon I was scheduled to see, then brought him into the room.  A little more discussion and the conclusion was once again, we are going to untie the shunt on my left side and have both running again.  The right side appears to be low in pressure as the bulb does not refill quickly when pressed, but the left side could be moving back into the high pressure range given the fact that I'm once again hearing the "swooshing" sound in my ears when I lay down, bend forward or do anything that causes me to strain.  I'm waiting now for a call to go in and have the procedure done, fortunately it is just a simple incision and removal of the surrounding sutures under a local anesthetic.

I'm also waiting on a call for a pain management appointment.  It appears the original pain management doctor I was referred to a year ago is no longer around and explains why I haven't received a follow up call since the office cancelled my appointment that was scheduled for October. (I assumed I was still on the wait list as it can be up to 2 years just to hear about an initial appointment)

Hopefully, there won't be too long a wait to get in and be seen by someone as over the counter Tylenol and ibuprofen do not manage the pain very well.

MRI with Contrast

Interesting article posted today, one that could be of concern to people with IIH who have had multiple MRI scans with contrast. I know I personally have had many MRIs since I was diagnosed in 2012 and every one of them has been with contrast agents. I don't know if the contrast mentioned in the article is the same as the one used in Canada, but definitely something to keep in mind.

It's not known whether these deposits are harmful or can lead to adverse health effects. "To date, no signs or symptoms of adverse health effects and no pathological changes have been associated with these gadolinium deposits in the brain," the FDA notes.

For the full article see: Gadolinium Brain Deposits on FDA Radar

I received my referral to my next neurosurgeon last night. I'm going on to my third NS. First one retired, second one has been on leave since at least April and now I have a referral to this one as my follow up after my hospital stay in May never did contact me with a new appointment after his office cancelled my appointment. My appointment is booked for August 6th.  Not that long of a wait considering I've been in kind of a holding pattern since June with the follow up situation. Of course, the appointment notification came with the standard "if unable to wait, please go to nearest ER", which, although there is a hospital in Brantford, I interpret as "please go to ER at Hamilton General Hospital" simply because Brantford doesn't have the neurological facilities Hamilton does. 

Family, Cakes and Dentist...

Added 2 new cakes to the Piece of Cake page. (Recent cakes are added to the bottom of the page..)

Both of my sisters ended up with late cakes this year. Mandee got a giant carrot cake cupcake with butter cream icing for her 26th, and Tara got a butter pecan with cream cheese layer cake, decorated with the character symbol for Sailor Mercury from the anime series Sailor Moon for her 27th.


Rachel is growing up way too fast! She lost her first tooth this weekend.  It's been loose since the early part of June so it took a while.  She's of course thrilled that the tooth fairy visited!

Rachel lost her first tooth this weekend

Danyael (pronounced Daniel)

Catelynn loves the new doll house!

Speaking of kids growing up fast!  We went to London ON on Saturday with my mother and youngest sister to see Tara and her little ones.  Danyael is almost 6 months and has grown up so much already! Catelynn is 2 and a  half and had a great time playing with her cousin Rachel with a little people doll house Rachel has outgrown.

Rachel with Catelynn.

I have a dental appointment tomorrow which I am not looking forward to it at all! I've always had issues with dental stuff, but I don't have much choice anymore.  Three teeth have cracked and broken due to the prednisone and my rheumatologist wants to start me on a bone builder. Before he will prescribe the medication, I have to be cleared by the dentist that no extractions or dental surgery is required.  I've been taking vitamin D with the prednisone and Imuran, but I guess it's not enough and my teeth are being affected by insufficient calcium absorption.