Sunday, February 27, 2011

Why I love spring

Early spring is great for my exploding head. The cold temps that kick off migraines and cranial nerve issues are ended. The pollen and allergy and high heat of summer has not arrived that makes the head go into overdrive trying to squash itself.

No, spring is good. The head feels as good as it gets. Most days, I feel just about normal. Unless I run up the stairs at work or carry something really heavy, haha.

And this year, another change. I'm happy. Happy with where I am in life, even as there are many things that need to change. I feel good about life, even if I don't feel entirely well every day. And I believe that is a radical shift.

Happy is a choice. Feeling good is a choice. It isn't about feeling well physically or not needing to work on aspects of my life. It's about deciding on wonder and joy instead of anger and bitterness and resentment. It's about deciding to paint my bathroom pink or tropical island water turquoise because it makes me smile.

It's about pondering what flowers to plant in the pots on my front porch. Pots I did not fill last year because I was too busy being crappy in my heart and feeling bad that I was never going to make my head well again.  What a load of wasted time!!  egad.

Someone I admire greatly had some huge life chaos these past few months.  Job loss.  Cancer.  Child medical issues. How he has come through it stronger and more energized and with some amazing opportunities has been nothing short of inspirational. And it all has to do with his attitude. He fought hard to stay positive and keep marching forward and blast holes in walls when doors and windows did not appear.
Read about him here.
And here.
And tell me that doesn't inspire!

So my point is, IH is crappy.  But I'm not.  It doesn't get to tell me how to feel emotionally or spiritually.  It doesn't rule my heart. It doesn't decide my future.  Like any curve ball, it changes the playing field and makes some things I wanted unattainable.  But it does not rend me useless.  If I can't find the doors or windows to my dreams, I'll follow my friend Marshall's lead and sledgehammer some holes in walls.

IH doesn't win.  I do.

Saturday, February 26, 2011

Spinal tap #2

It's been a very busy month for me between work and dealing with all of the symptoms of ptc.

The bronchitis and cold-induced asthma made me miserable for atleast two weeks, and even now, at the end of the month, I still don't have my voice fully back despite feeling ok.

I contacted my doctor about two weeks ago and told her that I had been dealing with LOTS of double vision. I hadn't fully put two and two together to realize that what I was experiencing was double vision. I just thought I was overtired, which I was, however, had never dealt with that before. The double vision felt like I was crossing my eyes, and then they would shake. The problem with this was that my eye muscles could not pull my eyes back to the proper position they should be in. I am actually seeing my neuro-opth. on Tuesday so this is something I am going to discuss with him when I go in. It seems to be getting worse.

When I spoke to my doctor (neuro) she felt that I should go and get another spinal tap to help reduce the pressure in my brain to see if that would help the double vision. Not the answer I was looking for, but I knew this was probably what she was going to say. I scheduled the tap for the friday before a long weekend so that I had time to just sit and relax or sleep to help recover.

The tap was HORRIBLE. Much worse this time than the first one I had had. I hate to speak poorly of a doctor, it's not my field of expertise and as a teacher, I hate it when someone talks bad about another teacher that isn't in the field and doesn't know what they are talking about, however.....I truly do not feel as though this doctor was experienced enough with doing taps. Normally a thirty minute procedure turned into a two hour procedure. The doctor had to give me two local shots to help numb me, and even using the floroscope machine (xray) he still could not find the right pocket to get the fluid. He ended up doing a tap four times!!!!! Luckily this was my second experience and not my first, because I think if it was my first, I would have really freaked out. It was obviously a painful experience. I handled it better than the first one I had, but I think part of that was that I knew what to expect. It's been over a week now, and my back is still very painful. I find it hard to stand for a long time, I get stiff easily and it's been hard to teach!

The good news about the spinal tap was that my pressure went down from the first tap I had. Opening for my first tap in December was 36 and this time it was 29. So, I am hoping that is due to the diuretic working. My problem is that sometimes I forget the diuretic or don't take it on purpose. It's difficult to constantly be running to the bathroom all the time and with my schedule at work, I can't just get up and go when I need to. Someone has to watch the kids! Ugh.

A few days ago, I ended up going to get a sleep study done because I feel that I have sleep apnea and I know that isn't helping me in dealing with the ptc. I haven't gotten the results of that yet, but should get them in a few days and then begin to move forward with a cpap machine. Kinda stinks, but I feel that my health is important enough to try and get a good handle on it and I know that if I am better rested from better sleep at night, it's going to make it a lot easier to deal with the headaches, etc.

Well, today has been a rough day with headaches, probably because I had been overdoing it all week with testing and work and it is finally catching up with me. I am supposed to be going to my sister's house this afternoon (an hour away) to celebrate my sister's and dad's birthdays and I'm nervous about driving because I've had some nasty headaches although they are better now, I'm worried that if I drive there and it gets bad again, I won't be able to drive back. It's frustrating because I am not close to my family (distance wise) and it's difficult to get the help I need sometimes. *sigh*

Friday, February 18, 2011

Posted for Victoria

Recently I’ve been asked to write quite a few blogs – writing from a carer’s perspective, which has been a new and exciting experience! 

IH Awareness –I.H.R.F.

Rare Disease Day 2011

February 28th 2011

As many of you are already aware, I’m very involved with the IH awareness campaign. The IHRF are running a fantastic IH awareness campaign at the moment on their facebook page – it’s linked with rare disease day and it’s called the Wall of Hope. Displaying the ‘Faces of IH’ – it really makes you realise how IH sufferers look absolutely fine when they’re not!

Here’s the link for you to check it out –

http://www.facebook.com/pages/Intracranial-Hypertension-Research-Foundation-IHRF/185094677335

This is our photo from the ‘Wall of hope’

untitled

For more information on IH and the IH Research foundation please go to

http://www.ihrfoundation.org

IH Brain Pain Team -

If you’d like to get more involved with raising awareness then please check out the IH Brain Pain Team. We work hard to raise awareness of IH and the IHRF – supporting the IHRF.

We’re on Facebook http://www.facebook.com/IH.Brain.Pain

Twitter –  http://twitter.com/IHBrainPain

and the website is -  http://www.ihbrainpain.org/

Finally …..

The days are finally starting to get a little warmer and Spring is just around the corner. It has been a long hard winter again this year, yet despite the bitter temperatures we couldn’t help but admire nature’s beauty and be grateful that we live in such a beautiful area.

Here are a few photos from the past few months…

SAM_2319
SAM_2336
SAM_2332

Thanks to everyone who has sent us  emails over the past few months, and commented on our facebook page and twitter pages …  we really appreciate your support!

We love to hear from you,  so if you’d like to get in touch with us there  are a few ways of doing it …. either email us at victoria@caitlinswish.co.uk

or go to our facebook page -

or you can tweet us on twitter at

@VTaylorAuthor    or @Artymum77

Till next time

Take care

Love

Victoria. xxx

 

Thursday, February 17, 2011

My kid has IH?! So What's Next?

Last week, my daughter had a routine visit to her neurologist to check on the neurological impact of intracranial hypertension.  On the way out the door to the appointment, I grabbed the "yellow folder" out of habit.  Without giving it a second thought, I had grabbed her entire medical IH history file.  After 14 years of battling IH, some things have become routine.  Is that a good thing?  I don't know; maybe; yes (I think).  It's good to keep a health log, but I also felt sad after the appointment.  It was a good visit -- the eyes looked fine and the symptoms are mostly manageable lately.  But I still felt sad.  In my hand was a lifelong history of my daughter.  I think that I felt sad because this history was not full of medals, trophies, and ribbons.  This was a record of the bad things along the way, and it was a very fat folder...

I'm not doing a very good job of giving parents advice as to what's next for your child.  In fact, I'm probably discouraging you from the very next step that you need to take.  If you've been given a recent diagnosis of Intracranial Hypertension (also called Pseudotumor Cerebri) for your child, then you are feeling overwhelmed, anxious, and possibly frantic.  Twelve years ago, there was so much for our family to learn, we didn't know what to do as a first step.  There are things that you can do right this minute such as making a plan and taking action.  Here's a list of things that I recommend to get things started:

  1. Get a folder and start a health log.  It can be as simple as scribbling notes about symptoms observed with a date.  A good detailed log will be essential to answering medical questions at appointments.  You might think that you'll remember everything, but sometimes the doctors ask for seemingly simple information that you won't be able to recall.  The log is for you, not the doctor.  Record as much information as possible at the end of each day.  Track how your child looked and felt during the night, in the morning, throughout the day, and bedtime.  When were the headaches at their worst?  Did any medicines help?  What medicines and how much was taken?  Did you forget to give a dose?  How bad are the headaches?  If your child is very young, sometimes a picture helps to describe the headaches.  Was there nausea? Vomiting?  Ear ringing? Pain in other parts of the body?  Dizziness? Visual disturbances? Did he/she miss school?  This is too much detail for the doctor to take in during an appointment, but you'll be able to study the log and give an overall trend.  Save these logs forever.  I've been surprised a couple of times when I had to go back several years in the log to answer a question.
  2. Get a letter from your child's doctor giving the diagnosis and a recommendation that the school make any accommodations necessary for your child.  You are about to learn how complicated it is for schools to teach sick kids.  There are many laws dictating who can get accommodations and what they can be.  In the long term, the school will want to do testing, reviewing and writing reports.  In the meantime, the fastest way to get help this week, not 3 months from now, is to take a copy of the letter  to your child's teacher, principal, and the school's learning consultant (if they have one).  They will then be able to write a "504 plan" which means that they can be flexible with your child's education.  The school will not know how IH is impacting your child, so you'll want to ask for things such as relaxing of deadlines, extra time for tests, taking tests at a later time if needed, frequent bathroom breaks, allow visits to the nurse, develop a method for sending assignments home to be finished and returned to school when done, and whatever unique needs that IH is causing for your child.
  3. Do some research.  Right now, you are on the internet reading this blog, but I'm recommending that you not delve into the deep dark corners of every IH patient's story that's out there.  Intracranial Hypertension is a life altering disorder, but there are many successfully treated IH patients.  The best method to learn about IH is to contact the Intracranial Hypertension Research Foundation.  As of this writing, they are the only research foundation dedicated to the medical research for IH.
  4. Learn to be flexible.  I've lost track of how many times we were on the way to an outing, drove less than a mile, turned around and went home.  That's one of the life-altering aspects of IH.  Learn to always have a plan B in place.  If we don't get to go to the zoo, then let's play a game at home.
As to the "yellow folder" making me feel sad.  I went home and put it next to my daughter's scrapbook.  The scrapbook is much larger, cheerful looking, and full of happy memories.  The happy book is bigger than the sad book.  Yay!  Happy wins!

Monday, February 7, 2011

How do you cope when your partner is diagnosed with IH?

(Posted for Victoria)
Why? Why me? Why us?
These are questions many of us find ourselves asking.
Getting a diagnosis of IH can be a long battle.
For us it was relatively short in comparison to many cases.
9 months after my husband had started showing symptoms of IH he was diagnosed.
Of course at the time we didn’t know that the headaches, blurred deteriorating vision, nausea, light sensitivity, noise sensitivity etc were symptoms of IH.
We hadn’t got a clue!
We’d never heard of IH!
We were all convinced it was due to him working too many hours on the computer, stress etc.
It was only when he took some time off work on sick leave that we knew something was seriously wrong.
I could see him deteriorating day by day. His speech was slurred; he was forgetting words, muddling his words. He was in constant pain; not only in his head, but his neck, back and shoulders….he complained of his tailbone aching 24/7.
He was constantly exhausted; no matter how much he slept he was still tired.
We were not prepared for what the Doctors initially told us, yet since we have found out that so many IH sufferers are told a similar story.
 “It might be a brain tumour!”
Your mind starts racing with a million and one questions.
I looked at my children’s innocent faces, they were so young.
I HAD to be strong, for them and for my husband. I HAD to be!
I couldn’t let them see how inside I was screaming ….
‘Stop the world I want to get off! I can’t handle this! This can’t be happening!’
No instead I had to put a smile on my face and tell everyone it was going to be ok…which is exactly what I did.
For my husband it meant immediate hospitalisation and day after day of testing for the causes of the papilledema (swelling of the optic nerve) Of course all the tests came back negative.
Eventually one of the neurologists suggested a lumbar puncture – bingo!!! Result!
My husband’s pressure was 42 - IH is diagnosed at a reading of 25 and over!
So at last we had a diagnosis. Intracranial Hypertension or Pseudo tumour cerebri as they called it back then.
Not a brain tumour, but brain tumour type symptoms.
We were so relieved.
It wasn’t a tumour.
It WAS going to be ok.
Doctors were convinced it must be a one off fluke. “After all Men don’t get IH you see!”
Of course they were wrong, Men DO get IH!
Anyone can get IH, no matter what their age, gender, or race…. ANYONE CAN GET IH!

Life as we knew it changed from that day on; little did we know that the diagnosis would be just the start!
Within 6 months after diagnosis it was becoming apparent that my husband would have to retire from the teaching career which he adored, he was just too ill to work anymore.
I gave up my job to become a carer.

When someone in your family becomes sick or disabled it has a huge impact on the whole family.
Everything changes and it leaves you feeling angry with the world.
Why me? Why my family? It’s not fair!!!!
You feel as if everything you have worked so hard for is being taken away from you.
You feel out of control.
Life becomes a day to day, hour to hour, minute to minute existence…constantly revolving around the sick / disabled person.

No-one plans to become sick or disabled, but these things happen and when you have children they can’t help but be affected. Roles become reversed and they become young carers.**
The guilt that it creates is not to be underestimated.
Very often the sick /disabled person feels as if they are a burden to the family.
They see the impact and the restrictions that being a young carer has on their children and it’s not the childhood they had planned for their children. It’s heartbreaking. Yet if you ask these young carers if they would have it any other way, you will hear them tell you how much they love their family. Very often they wish things were different, but they accept the situation and say that they want to care for their parent/ sibling/ grandparent.
All they ask for is to be better supported, and recognised for what they do.
Each young carer’s story is different and each story is incredibly moving, inspirational and shows daily acts of courage and selflessness.

As a parent it can be so hard watching how your child copes when they go to school. Many children who have a disabled/ sick parent at home feel isolated from their peers within school. After all how can another child with no personal experience of living with a sick/ disabled family member really understand how the young carer feels?
Some schools don’t offer enough support for young carers either… don’t get me wrong – some schools are amazingly supportive and cannot be faulted, but unfortunately so many schools aren’t.  
**Recent surveys showed that  60% of young carers do not think their teachers understand what life is like for them and over 50% do not feel supported, although teachers are aware of their caring role.
39% said that none of their teachers were aware that they were a young carer. **
Very often the children worry whilst they are in school. Is my Mum/ Dad / brother/ sister/ grandparent alright? Are they having a bad day? How much longer till I can get home and be there for them? 
 ** Research showed that 38% worry about the person they care for while they are at school **
70% of the children surveyed agreed that “being a young carer has made my life more difficult”.

The UK’s Children’s Society and Princess Royal Trust for carers have created a schools resource pack to enable schools to teach awareness of disability and young carers issues amongst their pupils as well as it giving the school step by step guides of how best to support young carers within their schools. It’s available as a free to download online resource, and the link is  http://professionals.carers.org/professionals/youngcarers/articles/schools-resource-pack,6282,PR.html

If your child is one of the young carers described above who has a tough time at school it just makes the guilt you’re feeling worse.
After all this IS NOT how you had planned your lives to be.
You didn’t ask for IH.
You didn’t want life to change.
So how do you cope?
How do you start making the most out of the life you now have, rather than grieving for the life you’ve lost.

We personally found that knowledge was power! (as the saying goes) We started learning as much as we could about IH through the IHRF website. We made brochures for our closest friends and family members.
 Some useful pages to look at for this purpose are

We also wrote down how IH affects my husband on a daily basis. (inc good days, bad days, and when pressure is high or low)
We noted all of his symptoms and gave a brief explanation of each and included this in the brochure.
Here are a couple of examples...

When people see him out on what he calls a good day they think he’s ok. They don’t realise that even when he says he’s having a good day he is still in pain. He has learned to deal with moderate head pain (that would render a normal person to bed.) A good day can also turn into a bad day if he is put into a stressful enough situation, his brain pressure will start to rise. The weather changing to low air pressure also causes his brain pressure to rise...very quickly if it’s severe weather.

DAILY HEAD PAINS. – Every day.
 These  range from a headache or migraine ( on a good day )  to severe pressure head pains when
 his brain is being crushed by the raised pressure ( on a bad day.) He describes it as if his head is in a vice
 which is being tightened. On a bad day he hardly gets out of bed!

EYE PAIN. – On the bad days – worse as pressure increases.
This he describes as a feeling of his eye being pushed outwards from inside his head, followed by a stabbing sensation from behind the eye and as if his eyes were “tearing”.

LETHARGY AND FATIGUE.
Sleeps between 10 hours ( on a good day) and 18 hours  or more ( on a bad day.)

Include symptoms that only appear when the pressure is high or is increasing – such as –

COLD SENSATION INSIDE THE HEAD
…As if someone has opened your head and filled it with ice cubes.  (Happens when the pressure is wrong)
 TAILBONE ACHES FOR HOURS/DAYS.
 This is when the pressure is very high.
BACK, NECK AND SHOULDER PAIN.
 This is an ongoing problem caused by IH which gets progressively worse as the pressure increases.

Don’t leave anything out…..I’ve given just a few examples here but in total we listed 30 symptoms in our document.
We have learned that by explaining things as openly and honestly as possible (using your own terms to describe what it feels like) has a greater impact when trying to get the people around you to understand.
Due to the fact that IH is an invisible condition it makes it difficult for people to grasp how serious it is.
You still look fine so therefore people on the outside looking in don’t realise how ill you are.
They may think you are exaggerating and you may find that some friends start to disappear just when you need them the most!
This is a tough life lesson to learn; that it’s better to have a few ‘real’ friends who are there for you through the good days AND the bad days, rather than lots of ‘fair weather’ friends who run for the hills on the bad days.

Don’t be afraid to stand up to those who can’t understand IH, and tell you it’s ‘just a headache’ and ‘get over it’.
If you have people in your life who are making you feel as if you are exaggerating and making it all up then that is so soul destroying and negative. It makes you feel as if you’re banging your head against the wall and it leaves you feeling frustrated, alone and depressed…especially if these are people who SHOULD be supportive.
Life has been much happier and more positive since we chose to only have those around us who are positive and supportive.
They are there in good times AND bad times.

These days we ARE positive.
There’s no more ‘Why me?’
Nowadays we think ‘well why not me?’
We believe everything happens for a reason, however hard it might be to come to terms with that thought when it happens.
In time you’ll see why it happened.


Our motto is to make the most of each day.
If it’s a ‘good’ day then do something with the day, make memories with the kids, with your family and friends….no matter how small …appreciate everything in life.
If it’s a bad day, just try to get through the day minute by minute if need be…try to focus on the knowledge that there’ll be another good day just around the corner, and focus on what you’re going to do with that day. Sometimes it can be so frustrating and disappointing when you have to change plans at the last minute due to a ‘bad’ day, but we have learned to accept it.







Resources 

                                                    **  What is a young carer? http://ht.ly/3odp9 ***
School’s Resource pack -

National Young Carer’s Coalition Comments **http://ht.ly/3odp9 ***


IH Research foundation (for more info on IH) **http://www.ihrfoundation.org