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 Danielle - diagnosed 2010

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lizrdwilson
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PostSubject: Danielle - diagnosed 2010   Sun Jan 30, 2011 4:15 am

Hello everyone, Just wanted to say hi and give my story on how I came to be here and part of the IH world that we all know and live.

My name is Danielle Wilson it was due to blurred vision that I came to hear and read the words Idiopathic Intracranial Hypertension, I wanted to get my children's eyes checked and since I had been experiencing blurred and black out issues decided to get my own eyes checked out as well. During my exam they noticed that my optic nerve in my right eye was swollen so they made an appt. for me to return the next week to see another eye specialist, at that appt. he asked if I ever had blurred vision or headaches I said yes but downplayed it as I usually do, since I had lived with it so long that I sometimes forget I have a headache. His words stung and also diminished the first part of my IH journey he said, "you probably have Idiopathic Intracranial Hypertension, I'll send you to a Neurologist there's no real rush and he'll probably just tell you to lose weight." I waited but then I went to my family doctor who set up a CT scan much quicker and sent me to a Neuro-Opthamologist, who set me up with a Neurologist he was teamed up with doing a study on IIH. I think it was in June that I saw the Opthamologist and he was amazing and so was the neurologist, they did say weight could be a factor but never made me feel like it was my fault that I had IIH or that it was 'nothing' like the 2nd eye doctor had. The Neurologist actually said after I had an MRI done that it showed ever sign of IIH that they look for, I said " what can I say, I'm an over achiever! LOL" I started Diamox in June2010 and started my journey of brain fuzziness, tingling and diarrhea!! It wasn't until September that I finally went for my lumbar puncture and I must say it was the WORST experience so far of my entire life! First try was in-office and it didn't work and whatever they did hit caused burning pain and spasms in my back and brought about an anxiety I had never encountered before, five days later I had my lumbar puncture under fluro and for five days after that I couldn't elevate my head more than an inch without the most excrutiating pain I have ever been in in my entire life. My husband did what he could to hold things together but my whole world became chaos during that five days and I have never caught up since. In October it became necessary for me to return to work as we were quickly getting to the point where we would lose our house and everything if we didn't have a second income ( I had stayed home since my son, our 3rd child, who is 4 was born) there were no jobs in my field available so I found a job and still work at a soap factory in my area. I can barely work and sleep, my house is a disaster and my hubby does what he can to help run the household. I recently joined Curves and workout as much as I possibly can in hopes that getting healthy physically and losing weight will give me my life back and my family their Mom/wife back. I just started Topamax this week as I couldn't handle the digestive issues I was having on Diamox. Here's hoping that things improve in 2011!
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Betsy
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PostSubject: Re: Danielle - diagnosed 2010   Sun Jan 30, 2011 4:59 am

Hi Danielle, thanks for joining us. I have only had two lumbar punctures , the first was actually only an attemp, they didn't get in and the second was under fluro and went better, but they hadn't told me to stop my bp medicine that was a diuretic. For two days I couldn't even sit up without almost passing out and it was more than a week before I felt okay. I totally empathize with you. This is a great place for info and for a shoulder and hug when you need it.
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Laura
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PostSubject: Re: Danielle - diagnosed 2010   Sun Jan 30, 2011 12:36 pm

Hi There Danielle!

Welcome to the Forum, gosh you have been through a lot over the years, I really hope this is your year and look forward to seeing more of you around the forum Smile

Laura
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VPShunter
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PostSubject: Re: Danielle - diagnosed 2010   Sun Jan 30, 2011 1:28 pm

Hi Danielle, Like you I just found this group, I just read your story and the pain and frustration comes through, I can relate. hugs 2


You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.
Eleanor Roosevelt
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Heidi
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PostSubject: Re: Danielle - diagnosed 2010   Sun Jan 30, 2011 5:05 pm

Hi Danielle hug, . welcome to the group. I could relate to your story, as I'm sure our other members will too. I know what you mean about LP's I've had some bad ones, and they're not nice. nuhuh

I absolutely applaud you for returning to work, and I understand about your home life, my was pretty much like that when I was first diagnosed. It just takes a bit of time to adjust to having to do things differently, and prioritise them not just on their importance, but on time and physicality to do them.

You can only do that by breaking things down to understand how each task affects your body and how quickly. To do this we encourage you to have a task list, and once you have worked out how much time you can deal with each one without symptoms, then you can put them into a sort of timetable. Eventually, you will find that you are actually able to do more than you think, because you are able to do it at a pace that your IIH brain and body can cope with. Importantly , you have to accept that changing the way you used to do things, in order to get back your control need to be made, and it will take time.

for you
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lizrdwilson
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PostSubject: Re: Danielle - diagnosed 2010   Sun Jan 30, 2011 9:18 pm

thank you everyone for your replies!!
It is amazing to have people understand what you are feeling and going through, no guilt or frustration and undue energy used up trying ot explain everything and justify things, love it!! Just like with my IH friends on Facebook!
No matter how hard you try those that don't walk in your shoes don't understand and the days you feel 'well' or you decide to suck it up, they think you are all better and expect you to be the person you were before, setting you up again to feel like a failure, vicious cycle. Usually when people ask how I am I just said "I'm doing alright"
I have realized that I will have to call in some reinforcements to get my house to a point that I can maintain it, it has gotten way beyond the point of no return, soooo... I am going to put aside some money and hire someone to help me clean sometime in February until I get to a manageable state. No need to beat myself up.
One of the most frustrating things I am dealing with this year is that I used to have my own cake business and I was amazing, WAS being the operative word. When people see my work they assume I can do it now and don't understand that I couldn't decorate a cake to save my life or it would take me days and every minute and all my energy to complete it. Part of this is my own fault as most people at work and at Curves have NO idea I am not well, I suck it up and smile. Especially at work, ironically some of the 'lifers' don't like me cuz I'm too happy and smiley...SERIOUSLY!! LOL Can u believe that?? It is probably harder for me to pack soap and work on the lines than 90% of them and inside I am probably sadder and more frustrated than they can imagine, a lot of times I fight back tears, ironic no?? I just work, workout and sleep as I mentioned before, but I'm too happy for them???? LOL I just wish I could wake up with some motivation and energy and the ability to be the Mom I used to be. For years I couldn't understand why everything kept getting harder and harder and I couldn't cope, I thought I was depressed, unorganized, lazy, I blamed myself and my Husband for everything, life has not been cheery in my household for many years and even now sometimes the burden my husband now bares is too much for him and my guilt overwhelmes me and we clash. Thanks for letting me vent here. Had a very bad blurry vision moment earlier today, that hasn't happened in awhile, hoping the Topamax helps sooner than later. i wish you all the best days you can have and for others to empathize with your journey! *hugs* The cake thing is hard because it is a part of me that I loved that at least for now I have lost because of IIH, I know you guys understand.
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Babby
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PostSubject: Re: Danielle - diagnosed 2010   Sun Jan 30, 2011 10:10 pm

Welcome! Your words towards the end really describe how I felt in the last years I was working.

Slowly, my performance was going downhill, I knew it, and couldn't figure out what was happening. My mind wouldn't focus, I couldn't complete tasks, and I would sit at my desk and cry.

Even after being diagnosed, I still didn't tie it all together. After years of having this, and talking to so many others, you realize you're not alone in how you feel, and that is such a blessing! You are not lazy, stupid, nor should you feel guilty for something you have no control over.

You finally realize you become a "new" version of who you were, and at times, mourn the loss of who you were.

I also have to have help getting my house in order. After I do, I swear I will stay on top of it, yet weeks go by, and it requires more of the same!!

Glad you are here, this is an awesome site for support and coping strategies!
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