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 Heather - diagnosed June 2011

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PostSubject: Heather - diagnosed June 2011   Wed Jun 08, 2011 2:29 pm

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Hi everyone. My name is Heather and I'm 24. I have had migraines since I was a high school sophomore (so about age 15). The migraines were really bad and, after trying everything they could, my pcp referred me to a headache specialist. My migraine doctor (as he is known in our household) is wonderful. We made a ton of progress and he also got me off of a lot of meds that weren't doing anything but causing more problems. However, back in November 2010, I started with a migraine that just would not go away. We tried a TON of medications and a nerve block, but even that didn't help my pain. He admitted me to the hospital to try another drug and when that drug didn't touch the pain, he had me get a spinal tap. That first spinal tap was like receiving a miracle! It didn't take away all the pain, but it made it so that I could function again. At the time, my migraine doctor told me that I was borderline BIH (or IIH), but didn't confirm it. Over the past couple of weeks, my migraine has gotten so severe that it takes all the energy I have to move from my bedroom to the couch, where I spend most of my day in pain and trying to sleep it away. Last week was horrendous for me as I was starting all over with the attempt to get the migraine under control using medications. However, after all the pills and the 8-hour ER visit, my migraine still won't budge. I saw my doctor yesterday and he is changing 2 of my medications. He asked me if I had any questions and so I asked him about another spinal tap. He looked up at me and said, "I think that is a great idea!" So, I have another spinal tap scheduled for this Friday. We shall see how it goes. At the very least, I want my migraine to become more manageable (where I can be a productive member of society). However, most of me really wants the pressure reading to be high so that we can decide if I do in fact have IIH. If I do have IIH, I know that I do not want to have to keep getting spinal taps every 6 months or so. I would rather have a shunt put in. Heck, even if I don't have IIH (Which, at this point, I'm pretty sure that I do), I don't want to keep getting spinal taps to relieve my migraine, so I still might ask for a shunt. This one migraine that I'm talking about, by the way, is on day 216. So now that I have rambled on about how I feel that my life is a living nightmare...

Thank you for having a place where I can find help and ask questions of those who have experienced this condition before me.
Peace,
~Heather~
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PostSubject: Re: Heather - diagnosed June 2011   Mon Jun 20, 2011 10:15 pm

It would be a great compromise...if I thought I could make it through the night...

~Heather~ :cry: :cry:
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PostSubject: Re: Heather - diagnosed June 2011   Mon Jun 20, 2011 10:44 pm

Heather if it has got to that stage, you can't go on like this and your parents must take you to the ER. They can't expect you to suffer like this and with this kind of pain. Please talk to them again and tell them you aren't prepared to suffer any longer. hug
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PostSubject: Re: Heather - diagnosed June 2011   Mon Jun 20, 2011 11:04 pm

I will talk to them...

Sorry about all of this...

~Heather~
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PostSubject: Re: Heather - diagnosed June 2011   Mon Jun 20, 2011 11:12 pm

Heather no need for apologies, that's what we're here for. We're here for you when you need help and support sweetie. hug
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PostSubject: Re: Heather - diagnosed June 2011   Tue Jun 21, 2011 3:49 am

I talked to my dad...we didn't go to the ER...I see my doctor tomorrow...I see my life collapsing in front of me...

~Heather~ :cry:
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PostSubject: Re: Heather - diagnosed June 2011   Tue Jun 21, 2011 2:38 pm

I'm sorry to hear you still haven't found any relief! Your doctor should be able to do something for you today, so hang in there!!!

I should be online most of the day, so feel free to pm me again if you need the additional support. Either way, please keep us posted!

Julie
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PostSubject: Re: Heather - diagnosed June 2011   Tue Jun 21, 2011 4:36 pm

Heather hug I'm so sorry that your Dad decided against taking you to the ER, and I know you must have had another dreadful night. I suppose all you can do is hang on till you see your Doctor, but when you do make sure you emphasise how painful it is for you, and that you aren't prepared to go any longer like this.

When they manage to control your pain and deal with what is causing it, like if it's high pressure for example, things should get a lot easier for you. At the moment the chronic pain, and lack of sleep are exhausting you, and will be affecting you emotionally, which is why you are so low at the moment. Try to hang in there, and focus on each day as it comes rather than what could or couldn't happen the next day.week or month. I know it's hard but once you get the right treatment for what is going on with you, and have relief from the pain and plenty of rest, things should settle back into a more postive state, and you can go back to a relatively normal daily life.

Keep coming back to us even if it's for a rant or chat. We're here for you hug.
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PostSubject: Re: Heather - diagnosed June 2011   Tue Jun 21, 2011 7:07 pm

hugs 2 Heather

I'm sorry to hear your going through this and it must be so frustrating for you! I understand the pain IH can put us through and because of it being an invisible illness that people don't understand how much pain your in.

I would talk to your parents again and direct them to the IHRF website which will explain the headaches and the seriousness of them or if that fails try and hold on the best you can honey till tomorrow when you see your doctor.

get well 3
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PostSubject: Re: Heather - diagnosed June 2011   Wed Jun 22, 2011 10:58 pm

So, I've been living with a headache that is a 10/10 on the pain scale for 3 days now. I'm basically living on my couch because no matter what else I do, my body just doesn't cooperate. My doctor took me off of a bunch of meds and I'll see him again next Friday. If things haven't changed, I'm likely to spend time at the Cleveland Clinic, where they have an intensive inpatient program. The only problem I have with that is that I wouldn't be able to start there until July 17th or July 18th because my family is going on vacation and I don't want to miss what may very well be my last time going on vacation with them without worrying about a job or an internship or whatnot getting in the way. Plus, while my family wouldn't be able to see me everyday, they don't want to leave town while I'm in the hospital.

Any suggestions on how to deal with this pain until it eases or I get to the hospital would be wonderful. Right now, I'm just trying to put on a happy face...which is taking up all the rest of my energy.

~Heather~ :cry:
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PostSubject: Re: Heather - diagnosed June 2011   Wed Jun 22, 2011 11:26 pm

As well as staggering my pain medication, sometimes a cold cloth on my forehead and eyes seems to help somewhat, maybe you could try that, and also if you can get yourself in to a position that your head seems to be eased with, also might help. Try avoiding the light being directly on you and not directly in your vision, or on your head.

I'll also see if I can find anything else that may help hug

Heidi xx
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PostSubject: Re: Heather - diagnosed June 2011   Thu Jun 23, 2011 1:58 am

Can I be 3 again, back when life was simple?

I've been in as dark a room as possible all day...the only position I can tolerate for any length of time these days is lying on my side on the couch...

The pain is just unbearable. I know that I need to give my meds that my doctor took me off of time to get out of my system, but I hurt so much that there is nothing to compare it to...I have kidney stones and even that is more tolerable than this pain. Part of me is willing to miss my family vacation to get help. I doubt that would happen though...but the ER and some pain meds would be nice...

I don't know how much longer I can go on like this...

~Heather~ :cry:
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PostSubject: Re: Heather - diagnosed June 2011   Thu Jun 23, 2011 7:33 pm

Heather, I really think you should tell your parents that you need to go to ER now, you've gone as long as you can and you cann't go on any longer, and it's not fair to expect you to. IF they wont go with you, do you have a friend you could call who would? You are probably at the point of exhaustion and there is no reason why your parents should object to you going to ER to get some relief for your chronic pain. It is unfair and unreasonable for them to ignore the pain and discomfort you are in, and they shouldn't be expecting you to just put up with it, especially when you know you could have it dealt with in the ER.

Be firm with them and tell them enough is enough now! hug
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PostSubject: Re: Heather - diagnosed June 2011   Thu Jun 23, 2011 7:52 pm

A few weeks ago, we did go to the ER. My parents are convinced that if I go to the ER again, we will just be repeating the last experience, which was that nothing helped. That was right before I asked for the spinal tap from my doctor. All of my friends live in different states now...nobody lives nearby.

I don't know that it is worth asking my parents again. Last night when I asked (again), I ended up in my room with the lights off and the door slammed closed, crying hysterically. My mom came up finally just to say goodnight. My dad decided that I could take my mom's meds and get relief. I ended up taking 60mg of Tylenol w/ Codein, 15mg (3 times the regular amount) of Ambien, a new nose spray that my doctor ordered for me, and a topical pain cream that my doctor asked me to try as well. I did sleep last night, but I know it's only because of the drugs. I woke up with the same 10/10 headache.

Plus, how do I know that the ER will try something different? What if they just do what they did the last time, which didn't help? I just don't know what to do anymore...

~Heather~ :(
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PostSubject: Re: Heather - diagnosed June 2011   Thu Jun 23, 2011 8:36 pm

Is it possible to ring the ER and ask them for advice and explain how much pain you are in, and that you really need someone to check your CSF pressure or at least prescribe you some effective pain relief until you get to your appointment? hug
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PostSubject: Re: Heather - diagnosed June 2011   Fri Jun 24, 2011 1:14 am

I could call, but for that kind of information, I'm going to need to be seen. And since my parents won't take me, there really is no point in calling them. I'm suppose to see my doctor a week from tomorrow (next Friday). I'm thinking that I could call them tomorrow and ask if he can give me something...anything...for the pain. That answer may also be that he can't give me anything. I just don't know what to do anymore. Waiting is not something that I want to do anymore, either. I hate living like this.
~Heather~ :(
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PostSubject: Re: Heather - diagnosed June 2011   Fri Jun 24, 2011 4:17 pm

Heather, did you talk to your doctor about checking your pressure again? You'd at least get a day or two of relief once they drain some fluid, and maybe your parents would cooperate if the doctor ordered it. I know it's not perfect, but your body needs a break! I remember those days..it is completely unbearable and crying just makes it all hurt worse, so you need to get relief. I know your doctor changed your meds, but did he give you anything for the pain?? It's really not a good idea to take someone else's meds because of interactions and side effects, but I'm glad you got a little rest..I'd call your doctor. I know you feel like you're nagging him, but he needs to know..it's his responsibility to take care of you, not the other way around!

Just do the best you can and keep us posted!
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PostSubject: Re: Heather - diagnosed June 2011   Sat Jun 25, 2011 1:15 am

Well, my doctor wasn't in today so I'm going to try and get through this weekend without fighting with my parents about my pain. However, just in case my head doesn't hurt enough, I have been dealing with kidney stones all day. In fact, right now, if the pain gets any worse, I'm going to ask to go to the ER for that pain instead of my head. I am so tired of being sick.
~Heather~
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PostSubject: Re: Heather - diagnosed June 2011   Sat Jun 25, 2011 4:53 pm



I'll be thinking of you and hope that you manage to get through it!

Heidi xx
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PostSubject: Re: Heather - diagnosed June 2011   Sun Jun 26, 2011 7:18 pm

OK, well, I called my PCP last night and they called in some Vicodin for me for the kidney stones. Thankfully, that stuff makes me really tired and, while I was up most of the night, the sleep I did get was very good and I'm in between "naps" right now. The kidney stones are getting better and the sleep is helping me to deal with the never ending headache. I also see my "headache" doctor on Friday as well as an ophthalmologist (for the first time). Then I have 2 weeks where I am determined to forget about my pain as my parents and I spend 2 weeks at the beach. I don't know much of what I am doing after that, seeing as how it will depend on how my "headache" doctor appointment goes. I may end up at the Cleveland Clinic for a week or two, or we may end up doing something else. I'll keep you updated on that! This post has been really positive, hasn't it?! I guess that is what happens when someone starts to help me with at least one of my problems.
~Heather~
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PostSubject: Re: Heather - diagnosed June 2011   Sun Jun 26, 2011 8:07 pm

Heather, I'm glad you have some relief at least from the kidney stones. Sometimes just relieving one thing is enough to make everything else survivable. It looks like it's also letting you look forward to the family vacation, time at the beach sounds great to me. Hang in there.
Hug3 Betsy
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PostSubject: Re: Heather - diagnosed June 2011   Sun Jun 26, 2011 8:15 pm

I'm so glad you've finally got some relief hugs I know you've really been through it for a while now.

Heidi xx
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PostSubject: Re: Heather - diagnosed June 2011   Mon Jun 27, 2011 7:10 pm

I am so glad you've been able to get some rest and relief from some of the pain! Hopefully your visits this week will get the ball rolling and you'll at least have a plan going into your vacation..good luck!!

Julie
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PostSubject: Re: Heather - diagnosed June 2011   Mon Jun 27, 2011 7:15 pm

hug Glad you managed to get some relief. Stay strong xxx
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PostSubject: Re: Heather - diagnosed June 2011   Mon Jun 27, 2011 8:55 pm

Well, the good news is that my kidney stone(s) is/are gone. The bad part of that is that my headache, which I have previously rated as a 10/10, is worse. I have never thought that it could get worse, but it's probably a 12/10 on the pain scale now. The last time I was at my "headache" doctor, he prescribed a new nose spray called Zomig. The pharmacy finally got it in and I just took a dose about 3 hours ago. I can take another dose, which I am going to try, but so far no relief. Part of me just wants to take the Vicodin in order to just pass out and not have to deal with the pain, but I know that will be wrong (a.k.a. I watch way too much of House to think that taking a Vicodin to help my problems will actually help...it won't (if you need an explanation for that, let me know)). Anyway, that is where things stand at the moment. Any suggestions about dealing with the pain would be welcome.
~Heather~
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PostSubject: Re: Heather - diagnosed June 2011   Mon Jun 27, 2011 10:15 pm

hugs 2 All I could suggest is maybe taking the Vicodin (and I watch House too and get why you would be worried) and put a cold flannel or ice-pack on your head and try and have a sleep. As long as you only take them now and again and for a short period you should be fine and not get addicted, don't forget House was on them for years.
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PostSubject: Re: Heather - diagnosed June 2011   Tue Jun 28, 2011 2:52 am

Hooray for no more kidney stones! I found a pillow size gel cooling mat at Walgreens drug store. It doesn't need refridgeration or electricity so it's very handy. It is cool to the touch and draws away body heat, I've been using it on my head and face when my headaches get bad. I've only had it since Friday and I love it, it recharges itself as you move around on it.

Betsy
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PostSubject: Re: Heather - diagnosed June 2011   Tue Jun 28, 2011 8:36 pm

Betsy, that pillow sounds amazing! Sometimes I wish I could crawl inside one of those things..lol. I've also had good results w/ a heated Shiatsu Massage Pillow. It works really well on those tired and tight spots in your neck and spine.

Heather, I'm glad you were at least able to get rid of the kidney stones and get some rest w/ the Vicodin! I know bad things can happen when you misuse medication, but as long as your doctor is aware of what you're doing it should be fine. You can always check w/ the pharmacist if you have any questions about meds, interactions, side effects, etc.. I've found they know a lot more than most physicians about that stuff.

As far as pain relief I'd say try to stay in a comfortable position between 45-60 degrees and use cold/heat as needed. Unfortunately, it seems to be different for everyone. Quiet and dark can help. Also, pressure to the back of your neck or over your eyes. I'm trying to brainstorm, but my synapses aren't connecting today..lol. Hopefully, the pain meds and little tricks will at least get you through to your doctor appt. If not, try to get to the ER..good luck and stay strong (I like that one Heidi!)!! Julie
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PostSubject: Re: Heather - diagnosed June 2011   Wed Jun 29, 2011 1:01 am

So, I've made some improvements. First, for the first time in months, I slept the entirety of the night, straight through!!!! I've typically been waking up anywhere from 3-8 times during the night, before I give up trying to sleep and eventually get up around 6:15am. Today I managed to sleep until about 8:20am with no interruptions! In addition, my headache is down from a 12/10 to a 10/10...which, now that we look back at it, it got so bad because of the Vicodin and then stopping the Vicodin (needless to say, I am staying away from the Vicodin). I also managed to get through most of today without just sleeping through it. I did take a nap around 6, but it was short and I managed to get up and be somewhat productive afterward. Now, don't get me wrong, I'm still in a lot of pain, but days like today give me hope that I will be able to enjoy my family vacation that starts on Saturday.

I have my first appointment with an ophthalmologist on Friday, which I am uncertain about. I don't want to wait until I lose my vision to be seen, plus it does hurt to move my eyes and I can feel pressure behind them. I'm just not sure I know what to expect or what to ask/tell. Any suggestions?

I also have an appointment with my "headache" doctor on Friday. I am pretty sure that, since nothing has really changed since the last time I saw him, he is going to refer me to the Cleveland Clinic. Part of me is really scared about going...but the other part of me is almost excited. Apparently they have an intensive inpatient program but I'm not really sure what to expect. I'll let you know more when I know more.

Overall, I'm not really sure what kind of day I've had, but I guess tomorrow is another day, right?

:frustrated

~Heather~
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PostSubject: Re: Heather - diagnosed June 2011   Wed Jun 29, 2011 3:32 am

Sleeping through the night is great Heather!

Julie - Forever Cool isn't a pillow itself but is sized to slip in the case with your pillow. I also use it by itself to lay over my head (and sometimes face).
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PostSubject: Re: Heather - diagnosed June 2011   Wed Jun 29, 2011 3:27 pm

Ahhh right, you did say it was a mat..thanks Betsy, I'll look for it.

Heather, glad to hear you're feeling better..at least good enough that you can see the light!

As far as your ophthalmologist appointment..you can review the guides for Talking to Your Doctor About IIH and Talking to Your Neurosurgeon About IIH. You want to know what they know and what their experience is w/ IIH, so the guides will provide some of those questions. I would honestly say if you don't know or understand something ask them to explain it. I assume they told you that you'd need someone to drive you home, so have them keep notes for you.

Appointments vary, but I assume the ophthalmologist will be thorough since it's your first exam. You should expect to be there at least a few hours. I see a neuro-ophthalmologist, so my experience may be a little different. They basically do a visual field test..cover one eye w/ some sort of patch and look into a machine that flashes lights. The brightness varies and you push a button when you see a flash..they'll do both eyes. They have me look through the chromosome book which has different shapes of varying shades and colors..you just tell them what you see. Then they put yellow drops in my eyes to check pressure..my ophthalmologist is old school, so uses a handheld guage to look in my eyes..some places have advanced to machines that just blow or look in your eye. Then they do a couple of vision tests..identify letters and numbers. More drops to dialate, then chin up to a machine where they examine your eyes. My guy uses crystals to direct intense light into my eyes..one at a time. They're just looking at structure..this is where they'll check the optic nerves. Your vision will stay blurry and light will not be your friend for at least a few hours, but they usually provide roll up shades (I'd take my own if you have a pair..you'll need them!). I usually get a summary of what he found at that point and we talk about my options. That's all I can think of. I know there's a lot of detail, but I wasn't sure how much you've had done in the past..hope it helps!

They usually move fairly quickly if there is any issues w/ vision or optic nerves, so be prepared for more tests and appts..just in case. I'm sure you feel like you're life is filled w/ baby steps right now, but this is a very important step forward..I hope they're able to help! Hang in there!!!

Julie

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PostSubject: Re: Heather - diagnosed June 2011   Thu Jun 30, 2011 10:14 pm

Yet another day where I am dealing with this never-ever-ending headache that is still a 10/10 on the pain scale. I have read over the guides in preparation for tomorrow's appointments...first with the ophthalmologist, then with my headache doctor. I'm nnervous, scared, excited, neutral, and just about every other emotion right now. I'm trying to be excited for our family vacation that we are leaving for on Saturday...two weeks at the beach is the best...but for some reason I just don't care as much about it as I use to...or heck, as much as I did before I was diagnosed. My mom told me two nights ago that 3 days after we get back from the beach, we are suppose to go to my aunt's to swim with the family (I come from a HUGE family)...however, if my doctor refers me to the Cleveland Clinic, I won't be here for that swim party...and then my entire HUGE family will be all over my parents and me about what is wrong...or my parent's won't let me go to the Cleveland Clinic...can you see now why I feel like I'm being ripped to shreds in a million different directions?! HELP!

:cry:

~Heather~
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PostSubject: Re: Heather - diagnosed June 2011   Fri Jul 01, 2011 1:06 pm

So, I talked my dad into buying me one of those gel mats from Walgreens that Betsy was talking about. It is Wonderful. I mean, it's not a permanent solution, but it was wonderful to use last night. I still didn't sleep all the way through the night, but I wasn't up for nearly as long as I normally am when I did wake up, because that mat really helped to relieve the tension in my head, neck, and shoulders. I'd say, if you can get your hands on one, do so!!

~Heather~
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PostSubject: Re: Heather - diagnosed June 2011   Fri Jul 01, 2011 3:12 pm

I'm glad the mat was helpful! Hopefully you'll have more information after your appointments today..the unknown is definitely the hardest! Check in w/ us if you can, otherwise have a great vacation!! If you're going to suffer w/ a headache it might as well be on a beach, right?! Smile
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PostSubject: Re: Heather - diagnosed June 2011   Fri Jul 01, 2011 11:40 pm

My eye exam went well...the doctor said everything is 100% normal...I follow up with her in 4-ish months...

My headache doctor messed with some of my meds and I'm seeing him in 2-ish weeks. In that time, he is going to be seeing the guy (doctor) who runs the program at the Cleveland Clinic and see if I'm a good match for that program. At my next appointment we will discuss whether to go that road or not.

Basically more unknown...

I am trying to stay positive about the next couple of weeks, but I'm really getting concerned about what happens if things are still this bad come the time I need to go back to school (which is August 13th/14th, just for the record).

Must go clean the house and pack now...but I'll have my computer with me while I'm away so I'll keep you updated and all that jazz.

:frustrated

~Heather~
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PostSubject: Re: Heather - diagnosed June 2011   Sat Jul 02, 2011 2:32 pm

Heather at least things are moving a long at last, but I do hope that they get it sorted before you go back to school. If you can let them know you are concerned about returning to school with no definite treatment plan etc, especially because you'd have to let the school aware of your medical history.

Do try to keep positive and see this as a step forward and not a step back. hug Your eye test was excellent and that must be very reassuring to you, because it means that your eyesight hasen't deteriated, and this is something to celebrate. hug

I look forward to your next update.

Heidi
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