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Mummy_D

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Reply with quote  #1 
I am very scared , I have to have an MRI brain scan and MRI neck and Mrv scan on Monday. I have had one before while I had h but I am so worried about making this worse. I know that I need to be fully protected and I called the radiology team. Their ear plugs they say are high strength and take off 33db (the guidelines in the uk is 29db minimum) and they also place pads over the ears on top. They said they would make sure that the plugs were inserted correctly and I can come out at any time. They can't use ear defenders because of the camera and the images they need to take. I am concerned because it is two sessions of half an hour each (not continuous noise I thinK the longest scan is five minutes). I know I have to have the scans to rule out neurological problems once and for all (I have loud pulsatile tinnitus vertigo and problems regulating body temperature and a strange burning sensation in my brain) but I am so very scared. I have heard so many horror stories about people getting worse after MRI scans. [frown] just looking for reassurance really
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ateacher

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Reply with quote  #2 
Well, I have always been afraid of doing an MRI because of my H and T.

Reading on several forums I found that some people had more problems after an MRI. But other people with H and T seemed to do handle the noise just fine.

So in the end it comes down to three things:

- the power and the noise of the MRI (some machines are louder than others)
- the real quality of your ear protection
- the individual sensitiveness / sensibility of your ears


I hope that people who actually had an MRI (I haven't had one yet) can help you out more than me.


EDITED: I suggested an alternative new MRI believing that it was more silent, but I was wrong. Still 100DB for headscans. :-(
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olms

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Reply with quote  #3 
  17 
Mummy-D:

First thing you do is cancel the Monday appointment to have the MRI. 

There is no rush. You aren't going to die. As my dad would tell me when I would rush in with some wonderful deal someone had told me about, he would say, "It'll still be there later. You don't rush into anything."

And I would say that to you. The MRI will still be there next week or next month after you have gathered more data. You don't have to take it before you have processed the information and talked with your medically-deprived-about-hyperacusis doctor.  

The second thing you do is don't take it. Do you know how loud it is? They didn't tell you that, did they? They didn't tell you because they don't know.

They just told you it's so loud you are going to need plugs. What is "so loud?" They didn't tell you, did they? Well, it about 100 to 125 dBs or more.

What is your sound tolerance level as shown on the front page of this web site? Normal conversation is about 70 dBs, I'm guessing. Lunch room cafeteria is 78 dBs, I'm guessing.

Your sound tolerance level is about 75, I'm guessing. (Look it up on the chart and you tell me what it is.)

OK, if your sound tolerance level is 70 to 80, and the MRI is 100 or more, you're gonna die. 

They also don't know what hyperacusis is. Ask them, what is hyperacusis? They won't know. Ask them how loud the machine is, they don't know. Ask them what your sound tolerance level is, they don't now. 

You're allowing a bunch of medical misfits to put you in the loudest machine that is made. And then they're going to blame you for not explaining to them what h was before you took the test. 

Here's what I did. I think I took an x-ray, and my doctor said, You have a spot on your kidney and I want you to take an MRI. Or, my kidney hurt, and my doctor said MRI. 

I knew they were loud, but it was so scary because my doctor wanted me to take an MRI, and my kidney did hurt or something, or they saw a spot on kidney from an x-ray, I can't remember. 

Anyway, so I'm in-between what to do. So I thought, get someone without H to get sound level of the MRI. Couldn't find anyone, so I like an idiot, thought, I'll listen to the machine without getting into it. 

(I didn't know I could have looked up the sound level of the MRI by going to the search engine and typing in, "MRI sound level." It took me 10 or 15 more websites to find it, but I found it. It's 100dBs or more.)

Anyway, I stood behind the controller's glass window, and listened. It sounded like 10 vacuum cleaners, and I was 10 feet away behind partial glass. I held my ears and ran out. I thought, why did I go in there in the first place?

One way I can tell you not to take the MRI is, you're not going to complete it anyway. Below are some accounts of people with H who have taken the MRI. None of them finished the test. Hello!!!!

So, what good is it going to do you to sit in that machine as you "man up" for from 5 to 30 seconds being the good patient? It takes much longer than that and it doesn't do any good unless you finish it. 

Even if you did finish it, they're going to say, the results were inconclusive. Or, we found no trouble.

So, what happened when I heard for myself how loud it was? Told my doctor, she said, "We'll give you an ultra sound (or, sonogram) on your kidney, then repeat it in 1-3 months, if there's no growth, there's no problem."

There was no growth, and no problem, I didn't need the MRI anyway, there is a substitute the MRI, it's called, x-ray, sonogram (or ultrasound).

You don't have to take the MRI. You're not going to finish it anyway.

If when you call them to cancel, and they give you a hard time, which they won't, but if they do, ask them what hyperacusis is, and they'll say "hyper-who?"

Ask them how loud the machine is, and they'll say, "Are you talking to me?", ask them what your sound tolerance level is, and they'll say, "Do what to whom?"

See, they aren't in the same league as you are. They don't have to be, for they don't have h. You have to look after yourself.

Tell them you have a "scheduling conflict" if they ask you why for the cancellation. Tell them you can't keep the appointment because you're going to have to go to their funeral, if they keep giving you a hard time. 

If you don't cancel, just don't go to the appointment. They run those suckers, I mean, those dear patients, through that MRI like a barber shop. They won't miss you.

If you take that MRI, what good is this website? 

Cancel, ask doctor for test substitute.

              Tom

(See below data about MRI that was first posted 11/3/2013
under title "Ear Pain after MRI"
now about 5 to 8 pages back on this same "New Messages" section)

_________________________________________________________________

Posted 11/03/13      #1

Towards the end of September, I fell and hit my chin.

I got neck pain and headache, so orthopedist sent me for MRI.

I had a closed MRI of the neck almost 3 weeks ago. I was given ear plugs, but the noise was so loud, like a jackhammer next to my ears, that after 20 minutes I was going to yell to let me out, but it just so happens that the MRI was done at that point.

Since then, I've had constant burning and pain and fullness in my ears. I also hear a crackling noise when I turn my neck.

I visited an ENT, who had an audiologist test my hearing and said that it's in the normal range.

Has anyone had an experience like this; if so, have you been able to do anything about it?

Thank you.

(below response on same above thread)

You are not the first one!!
I know a lot of people with a noise trauma after an MRI... :-(
_______________________________________________________

(below response on same above 11/03/2013 thread)

I passed out during my MRI.
I am a little better now, 2 months later.
I am more out of balance. I am ok and then a loud noise will set me
way back and it takes longer to regroup and feel comfortable again.
I hoping time and gentle sounds will help me heal.
__________________

(below response on same above 11/03/2013 thread)

I am scheduled for an MRI. I will definitely pass on it.

_______________________________________________________________

(below, 3 or 4 pages back, under New Messages title, "MRI")

Oh, yeah, open MRI's are quieter than closed. Maybe a little bit, but let's talk to someone on the board who has been in one of those suckers.

        Lesky on this board posted only a month or two ago, under title, "MRI....."

        "With sound levels ranging from 85-130 dB I am terrified beyond words. I had an
        open MRI brain done in 2003 and it was a trainwreck and I aborted the scan
        after aprox 60%. And I was in much better shape 10 years ago."

    
     And, of course, the above was with "sound protection" which doesn't work at anywhere close to those levels with h people.

_________________________________________________________________

         OK, what else we got? Oh, OK closed MRI scan:

                       According to GE, "the typical MRI scanner generates 110 decibels of noise
                  when it's hard at work."

                  So, that doesn't work. So, what else?

_______________________________________________________________________


        Board member Ik said in recent post that GE had a new silent scan. Very interesting, except for 2 things, they don't give out any real numbers, as in did anyone ever take a sound meter reading for the new machine? No. 

          It's 76 dBs, but that's according to GE, who made the machine. So, we don't know, but it is more quiet. Except it's not near you, unless you live in Michigan. As of September of 2013, there was only one such machine in the U.S.: Michigan.

       So, that's out. Why else we got? 
______________________________________________________________________

                                Tom
       

                                        
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DanMalcore

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Dan
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Reply with quote  #4 
I think I need to jump in here. 

First of all it is important to rule out any neurological problems (i.e. acoustic neuroma, etc.).  A good doctor needs to know this to give a proper diagnosis.

Many of us have had MRI scans and, more than anything, they put the fear in patients who are already experiencing decreased sound tolerance (DST).  If you approach this test with the proper ear protection you will be fine.  Will that end your worries - of course not but you need to put your mind at rest that you will be okay.  If your ears sound more sensitive after the MRI it is likely because you are anxious and will need to settle yourself down.

Common advice is to wear properly inserted foam earplugs and earmuffs (that contain no metal).  This will give you a solid 45 decibels of noise protection.  Just because earplugs are rated at 29 decibels and earmuffs are rated normally around 30 decibels that will not give you the combined protection of 59 decibels.  Some of the sound you take in will be through noise conduction.

It is important that you learn how to insert the foam earplugs.  Practicing the maneuver will give you confidence.  This video is helpful:


The one suggestion I would add to the video shows is that the earplugs must be rolled at tight as possible - at least no larger than the circumference of a pencil.  Once you accomplished this insert it right away.  I have always had the best luck slightly twisting it as I insert and can usually get it inserted very deep.  This is key. 

I would encourage you to proceed with the MRI to rule out any contributing causes. 

I think it would helpful if others would chime in and share their positive MRI experiences.

One final note: while I was having the MRI I prayed because it always settles me down.  I know you will focus on the noise you still hear even with all the ear protection you have on, but you will be fine....

Fight the fear...

[wave]Dan

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"Yesterday is ashes, tomorrow is wood, only today does the fire burn brightly"
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Johnloudb

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Reply with quote  #5 
Mummy D,

You'll do great! When I'm worried about a particular sound situation I'll often do visuallization beforehand, picturing myself being exposed to the sound and tolerating it just fine ... enjoying or relaxing or whatever, not distressing. It's helped me a lot.

I've done the same as Dan explained, with inserting foam plugs. Worked well!

John
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olms

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Reply with quote  #6 
Mummy-D:

To be encouraged as a hyperacusis person to take the MRI as your first choice is ludicrous. 

The machine is about 100 to 110 or more decibels, according to one site, and another site said it last for 30 minutes. Which means for an h person, the sound is not 100 dBs but 200 dBs, because you hear it at least twice as loud.

And, so, little ear plugs against that kind of sound for that long for a person with h is not a good situation. (And your ear plugs only give you half or less of protection that a none h person would have from the same plugs.) 

But there are alternatives. Which you should "discuss," rather "insist," that you take the ultra sound first, with your doctor before you take the MRI.

He's going to be persistent, "I'm the doctor," type of attitude. You have to be more persistent with your side of, "I'm the expert on h, and it's my ears that can be hurt at anything above 80 or 85 dBs, and this machine is 100 to 110 dBs or more, and to me it sounds like 200 dBs."

If he doesn't agree to an alternative to the MRI, you can tell him you're going home to think about it, and you can always get another doctor. You can't get another set of ears.    

Here's what I found on the net search engine.

____________________________

Site name: http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/MRI_scan

Alternatives to an MRI scan

The MRI scanner is a complicated piece of equipment that is expensive to use and found only in specialised centres. Alternatives to MRI depend on the medical condition under investigation, but could include:

    X-ray examination
    Computed tomography (CT), an X-ray scan
    Ultrasound
    Blood test
    Biopsy.

___________________________________________________________________________

site name: http://www.ncbi.nlm.nih.gov/pubmed/16754192


Ultrasound imaging and contrast agents: a safe alternative to MRI?
Wink MH1, Wijkstra H, De La Rosette JJ, Grimbergen CA.
Author information
Abstract

Microbubble contrast media are used to enhance ultrasound images. Because ultrasound is a real-time investigation, contrast-enhanced ultrasound offers possibilities for perfusion imaging. This review is conducted to evaluate the safety of contrast-enhanced ultrasound and its possible role in medical imaging. The safety of diagnostic ultrasound is still an important field of research. The wanted and unwanted effects of ultrasound and microbubble contrast media as well as the effects of ultrasound on these microbubbles are described. Furthermore, some of the possible applications and indications of contrast-enhanced ultrasound will be discussed. The shared advantages of MRI and ultrasound are the use of non-ionizing radiation and non-nephrotoxic contrast media. From this review it can be concluded that, for certain indications, contrast enhanced ultrasound could be a safe alternative to MRI and a valuable addition to medical imaging.

    __________________________________________________________

            In a ny times article on pacemakers and mri, it noted doctors many times do not consider the risk of an mri on a pacemaker patient. The article noted at the end:

Or — a possibility that occurred to me — perhaps the physicians aren’t being quite as careful as they say about ascertaining or remembering that Mr. So-and-so has a pacemaker and discussing the scan’s risks and benefits.

Beth Lester, vice president of Penn, Schoen and Berlind, the survey firm, finds that discrepancy intriguing. “The communication between doctors and patients over the risks of the M.R.I. for those with implantable devices has to improve,” she said.

So the National Council on Aging is urging patients with implanted devices (1.5 million have pacemakers alone, the council says) and their caregivers to raise the questions themselves. “Ask what the complications are for a M.R.I., what are the choices, what else we can consider,” said Stuart Spector, a spokesman.

_________________________________

  (See, doctors aren't being careful enough with pacemaker patients, either, the author noted above.

Same way with h patients, so insert "hyperacusis patients" every time you see "pacemaker patients" above, and you have the same thing. You as the patient have to be real careful with the doctor, who is not paying attention to your condition.

To go MRI first is ludicrous. You can always go MRI second if ultra sound doesn't work. What is this philosophy of go with the 110 dBs (200 dBs for an h person) machine first, then the quiet machine second. That's stupid.

You have a lot of info. It's called thinning the heard. 

                 Tom


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ontario78

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Posts: 186
Reply with quote  #7 
Mummy what exactly are they looking for? The cause of your PT? It is a big decision to make but ultimately no one can tell you whether it will make you worse or not. .I do know someone who had MRI and she may chime in if she still visits and while highly unpleasant she only experienced a temporary setback. So if anything I would imagine as long as you insert plugs well, you will be o.k..I know others who have handled it ok I think at TT. Anyways I will be thinking of you and sending you positive thoughts. You my friend, are the bravest h & T fighter I know! *hugs*

p.s once after watching a you tubevideo on how to properly insert. plugs, I realized mine were never properly inserted to begin with! lol..now I wear the kind that narrows and pull up on ear while inserting .it is much, much better!!

oh sorry just reread the reason of having then done..well it would certainly give you peace of mind..
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ontario78

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Reply with quote  #8 
Tom they can't use ultrasound to rule out neurological issues.

Sarah
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DanMalcore

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Dan
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Reply with quote  #9 
Quote:
The machine is about 100 to 110 or more decibels, according to one site, and another site said it last for 30 minutes. Which means for an h person, the sound is not 100 dBs but 200 dBs, because you hear it at least twice as loud.


All do respect, first of all you have never had an MRI.  I have had two MRI's.  Secondly MRI's do not last for 30 minutes.  The time varies depending on what they are looking for.  Please don't give advice on something you have never experienced and know nothing about.

Sometimes I get tired of people peddling fear when what we should be doing here is giving reassurance...

[wave]Dan



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Rob

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Reply with quote  #10 
I've had three MRIs since getting hyperacusis.  The first one was devastating.  It changed my hyperacusis from moderate at best to severe. 

But this wasn't due to exposure to the MRI.  It was due to exposure to the MRI without hearing protection. 

The next two MRIs were no problem at all because I was wearing hearing protection. 

Exposure to the sound emitted by an MRI won't hurt you if you wear correctly-inserted earplugs. 

Rob





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Mummy_D

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Reply with quote  #11 
Thanks guys for your replies. I considered everything and made LOTS of phone calls this morning to find out a lot more. I have made the decision to go ahead with all three scans however I have changed venue and manufacturer of the MRI machine. Instead of getting it done on the mobile 1.5t GE machine at Nuffield I am now going only a day later to Spire healthcare who use a newer slightly quieter Siemens machine which is larger and hence I can wear ear plugs with SNR of over 35db plus some good quality ear defenders on top. I feel comfortable that this will protect me sufficiently and I know it is important for my anxiety to finally rule out (hopefully) anything sinister as to the cause of the pulsatile tinnitus and burning sensation in my head. I felt bad letting Nuffield down but I need to think about me and recovery as number one priority - I could not deal with a setback of either anxiety or my hyperacusis. I am sure it will go fine and will keep you posted. They are also stopping the procedure at the half way mark and letting me have a break. I did consider an open or upright MRI but they are still noisy and in some you can't wear ear phones. Morriston hospital about seventy miles away has just got the first silent MRI scanner in the uk however it is on the NHS and the waiting list is huge. Thank you for all your comments
Wish me luck!
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olms

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Reply with quote  #12 
Mummy_D:

I think you're in the clutches of an ear doctor.

You said you've already had one MRI and an MRV and nothing was found and now the ear doctor wanted to you take another MRI "to rule out neurological problems."

How about, is there a test to rule out ear doctors? A test to rule out Martians causing all of this?

I think you should never go into that ear doctor's office again, or to his MRI machine.

You have t and h which "started out of the blue." You don't have any idea how it started. Were you on medicine, which can cause h and t? Were there any loud sounds when it started, which can cause t and h?

You have t and h but yet your ear doctor is wanting you to take a second MRI for 30 minutes which has a volume of 100 to 110 dBs. Did he tell you how loud it was? He knows you have h, what's going on here?

The key word is ENT. I went to my ENT a month ago and they first ushered me into a sound booth, which I knew was going to be the ear test, and I didn't ask for an ear test and told them I didn't want that.

For you to keep taking more MRI's is certainly a money enhancing effort for him, but what are you getting out of it, since it's 100-110 dBs?

How did the first MRI go for you? Was it too loud? You said you could take a hair dryer, but yet don't like noise much over conversation.

"Had all the tests possible."

"I've had so many tests, and all clear."

This one will be all clear, also. How did I already know that? 

"have no idea what caused this. It came on suddenly during my daughters fourth birthday party."

It might have been some noise at the birthday party. Do you remember that?

I wouldn't take the MRI. Just mail him $5,000. It's the same thing, without the noise. 

Even a con artist doesn't put you through the 100 to 110 dBs of noise. He just takes the $5,000.

For an ear doctor to put you through 100 to 110 dBs, and he's treating you for hyperacusis, is a joke isn't it? And he's not even telling you how loud it is? That's a crime. 

One reason I didn't take the hearing test was because I knew there would be loud pitched beeps which I couldn't tolerate because I have h, which is what happened at my last "one beep" hearing test 15 years ago.

For you to be shaking in your boots at the idea of taking a loud MRI, when you don't even have to go take the test, is off the charts. Don't you see what's happening here, he's making money off of 100-110 dBs tests for people with hyperacusis.

He's already given you a test for your sound tolerance level, which is around 75. Now he's prescribing a second MRI which is 100-110 dBs. He's not even paying any attention to his own tests. He's not paying attention to your ears. Just send him the $5,000 and don't take the test.

Your ears deserve better. He doesn't deserve anything but the back of your hand. How are you going to help your kids if you keep taking 100-110 dBs MRI's? Aren't they more important than the ear doctor?

                    Tom

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Johnloudb

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Reply with quote  #13 
Mummy D,

Sounds like a good plan, I'm sure it will go great, best luck to ya!
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Mummy_D

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Reply with quote  #14 
Thanks tom I appreciate your concern and I hear what you are saying. It's a different doctor to the first one I saw. How things work here in the uk is that it's the hospital that gets the money for the scan not the doctor as I am seeing him on the NHS I just chose to have the scan privately.
I had one MRI when I already had h and I didn't notice any change in the h or the t afterwards. I think the key is very good protection. I don't even know what my ldl levels are as they haven't been checked recently but my issue is more with the pitch and the type of the sound.
Pulsatile tinnitus is very different to normal tinnitus and sometimes they can find a cause (sometimes they can't too). I am having anxiety because I have terrible light sensitivity some vertigo and a strange burning inside my head problems tracking objects nystagmus etc etc that I have to be sure there is nothing sinister causing those symptoms. I too believe this will be clear (I hope so) but I need to know that. The neurologist is concerned about raised Intercranial pressure too and the next step would be a lumbar puncture but if I can avoid that then I will at all costs because it is not pleasant.
These scans are not repeats they a look at slightly different things. After this final scan it will have been belt and braces and then I can rest assured that there isn't anything more sinister. If I just had t and h and not all these other problems then I wouldn't have felt the need for all these tests. But I have been suffering with some quite alarming symptoms and for that reason owe it to my kids to at least get that checked out.
I do appreciate your concern tom and I took on board some of your fear - hence frantically calling round this morning to see if I could find a better scanner for me. I am now satisfied I have done this and whilst I know this will be unpleasant it is sadly necessary. I just wanted to reach out to others on the forum who had been through the same experience and were ok afterwards (assuming they we're directed to wear sufficient ear protection - sorry rob I know your first MRI was the cause of a huge worsening of h for you).
Linde, Ontario and johnloudb - I consider all three of you you very good friends and I thank you for your ongoing support on this network and the Facebook group. You fill me with positivity. I know linde your own experience of MRI like rob was also not good and thank you for your honesty and sharing your story. On balance I need to clear any possibility of a sinister cause for my neurological problems and the pulsatile tinnitus. I will make sure I am completely protected and I slept better last night knowing I am going into a more open bigger machine with the ability to wear muffs as well as very good ear plugs (and I have been practising inserting them correctly today). I also have a diazepam to take before I go in.
Once I am absolutely certain that I am not going to die (and trust me my mind has been there so many times - oh the horror stories on the internet about pulsatile tinnitus dizziness palpitations etc, thanks very much Dr Google - not!) then I can move on with my life, my trt, and perhaps even just accept this condition for what it is, right now, but knowing that I can improve, others have improved and so why not me too.
Tom I thank you for taking the time to write such a comprehensive reply and I do appreciate your concern, I know it is well founded and genuine, but I do have to go through with this and it's my choice I know no one is forcing me. I just wanted to be fully prepared
I am doing this for my kids, time to deep breathe!
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