Reblog: How to Get a Great Letter from Your Doc

I wish I had read this article earlier but I still thought it was worth sharing since it has some great advice for anyone applying for disability. I finally have my ALJ hearing for SSDI next week and although I’m pretty nervous about it, I have a lot more evidence now than I did back when I applied for benefits in the summer of 2015. It’s honestly amazing what can happen in two years and how far I’ve come in this journey. 

Source: How to Get a Great Letter from Your Doc

It’s Alright Not to Feel Okay…

For the most part, I try to stay positive about what I post on this blog. But, as most of you already know, life with a chronic illness is hard and it is definitely not always sunshine and rainbows as one might think – although I do believe that both would make things slightly easier to handle, don’t ya think? Nevertheless, there are just some things that come along with living “the sick life” that truly shake you to the core sometimes. For me, it’s hearing about other patients that have the same (or similar) diagnosis and have passed away as a result. I posted the following on my personal Facebook page a little while ago but felt it was important to share on this page as well. Sometimes you just have to say what’s on your mind because it’s good for the soul. In a way, venting allows me to grieve – not only on behalf of those that have passed but also for myself.


Sometimes I get so tired of hearing about my fellow warriors dying because their pain was not taken seriously or they couldn’t find the help that they needed. It’s becoming way too common lately and just thinking about how others have been treated because of their illness – hell, how I’ve been treated at times – makes me both physically and emotionally sick.

Trust me when I say that majority of people can’t even begin to comprehend the level of pain that those of us with vascular compressions live with each and every day. Or how much has been lost as a result of illness? Although I don’t necessarily agree, I can absolutely understand why many have chosen to take their own life.

Honestly, I’ve been lucky. It took a lot to just simply survive. Being misdiagnosed could have killed me. So could have all the wrong medications, treatments, and surgeries that have been offered to me along the way. I had to educate myself and challenge my care at every single step along the way. I’ve had to stand up to my doctors. I’ve had to fire some doctors. I’ve had to prove myself over and over again – prove that I was, in fact, sick; that I wasn’t imagining the pain – just so that my concerns would be heard and taken seriously. So that someone would help. Basically, I’ve had to fight with every bit of strength left inside of me just to get to where I’m at today – and no, I’m not better yet.

Obviously, this hasn’t been easy and I’m still in pain almost every day. Yet, somehow, I still hear that I’m not actually sick or that I’m not sick “enough”, even though test after test show’s that something’s seriously wrong and has been for a while. Eventually, something has got to give in the way we do medicine, especially when it comes to managing chronic or rare conditions. The gender bias in treating young women needs to stop as well.

No, it’s not anxiety! It’s not depression! And it’s definitely not in my goddamn head! These conditions are real and you would know that if you took a minute to listen.

Mostly, though, I’m angry – angry that this is somehow okay; that this is acceptable. I’m also incredibly sad as well. These tragedies could have been avoided. Most of these deaths are senseless. Something could have been done. The worst part, however, is that nobody cares. I repeat: nobody gives a damn.

Do you think the doctors cared when they heard that their patient had died? I doubt it.

Do you think the friends or family members who left when the person became ill and couldn’t get out anymore really cared? Not enough, obviously.

What about all the other people in their life who judged them, told them to try harder – to do more – to be more- to stop being lazy? Do you think they cared at all, really?

I cared, though… I still care.

Part of this is selfish, though, because I think about how easily that could have been me – and could still be me someday. I hear about the others just like me dying so frequently lately that the idea of death no longer scares me – it’s just par for the course at this point. How sad is that? I tell you, having a chronic illness makes you jaded.

I’m really trying not to be negative, but I’m so incredibly frustrated and disgusted that I just needed to vent. I just hope someone out there is listening.

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Whenever you need or want somebody to listen, I’m here. Just send me a message either here or on the Undiagnosed Warrior Facebook Page – I’d be more than happy to hear your story anytime.

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suicide

National Suicide Prevention Lifeline Magnet, SVP05-0126

National Suicide Prevention Lifeline Magnet

Please keep fighting fellow warriors!

Feeling kind of fragile lately, I know only I can save me now…

“Fragile, Quiet
Feels like I’m dying
Crystal waters
Pulling me under
My rage is like thunder”

(Jennifer Marks – Lyrics Below)


Lately,

I feel the universe is testing me

To see if I will break…

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What do you do when you can’t do it all?
When everything is extremely important and none of it can be eliminated?
And all of it is time sensitive?

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 It feels like it’s never going to end.

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But so much has happened, and is happening

in both my life and my health.

I’ve been waiting for a free moment to update,

but I don’t even know where to start.


No Sleep September 

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Wasn’t able to sleep for weeks all through September, although it seemed to run into the first week of October. No idea why, I just suddenly became “nocturnal”.  I would be wide awake until about 10 am before I would then crash out until about 5 or 6 pm. I tried forcing myself to stay up, hoping I’d fall asleep early, but even that didn’t work. Again, I wouldn’t get tired to 10 am and would be “stuck” awake for 2-3 days. It was awful.

I am FINALLY back to sleeping at night, but now all I want to do is sleep. No amount of caffeine seems to fix my tiredness. I talked to a few of my doctors about it and none of them really seemed too worried about it except for my therapist. I guess we’ll see how the next few weeks go and bring it up again at my follow-up appointments, but I’m really worried how drastically my sleep patterns have changed.

The ups and downs with doctors

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Gastroenterology

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I had a follow up with my GI doc mid-September. After meeting with vascular surgery and the lack of medical evidence from the last few rounds of GI testing, I assumed we were pretty much done. Boy, was I wrong.

Despite reviewing the update from the vascular surgeon, she wanted to order even more testing. Excuse me, what? I wasn’t happy, to say the least. Especially because a few of the ones she ordered were ones I’ve already had in the past that all came back normal, not to mention that every GI test involves some sort of pain or torture.I also really don’t want to do them again, but she wanted to see if there is any change between then and now, especially with confirmation of Superior Mesenteric Artery Syndrome (SMAS) now. Plus, she talked with the vascular surgeon and convinced them that I needed to redo the upper GI series/small bowel follow through, even though he said it wasn’t necessary. This test, out of all the medical tests I’ve ever had, has been nemesis since early childhood. Even now, I cringe thinking about it.

Really, though, I have been having medical testing multiple times a week since February and frankly, I’m just tired. But if I decline to do them, then I am a “noncompliant patient” and it could affect my disability claims. *Sigh* There’s no winning, so here I am, yet again.

Vascular Surgery

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I was excited for my follow with the vascular surgeon with how well our consult went the month before and was ready to get a game plan going to treat the vascular compression syndromes. Originally, I was scheduled for an afternoon venogram that day to measure the pressure of blood flow in the veins that were compressed and see if they could confirm a diagnosis of pelvic congestion syndrome. I should have known that the plan could potentially change (especially after he changed his mind on needing additional GI testing), but he seemed so confident at our consult that I didn’t even give it a second thought. Wrong again.

A week or so before my appointment, I received a call from the same hospital asking to schedule with Dr. So-And-So. I had no idea who Dr. So-And-So was. His receptionist explained that he was a GI surgeon that my vascular surgeon called to set up a consult with because he will be assisting in my surgery. MY SURGERY?!?!?! It was news to me, but I scheduled anyways. I think to myself, FINALLY! We’re going to do something. I was both excited and petrified at the same time, especially given the potential severity and risks (depending on which type of surgery they were looking at doing).

I started making lists of things to get myself ready, reading about the pros and cons of each procedure, etc. I even made it Facebook official:

September 22:

I just got a call from the GI surgeon at University. The Vascular Surgeon called him to see if he could assist with surgery, so I have my consult end of October. Looks like we’re going in to fix the SMAS, Nutcracker, and May-Thurner all at once.

I’m petrified and ecstatic all at once. I’ll have to wait until all testing and consults are done to see if they are stenting the veins or completely “rerouting” them. Huge difference in recovery time. From what I hear full recovery isn’t guaranteed or it can fail entirely, but this is my only shot of ever feeling better.
Hoping for surgery around Christmas.

Essentially, overplanning like I usually do. Then I realized, I didn’t receive the document about prep instructions for the venogram in the mail as I expected. I decided to call back to the hospital to see what I needed to do. Good thing I called, though, because they didn’t schedule me for a venogram like I was told during my consult. It was just a follow-up appointment. Um, okay… I thought maybe they found something different during their medical conference, where they were going to review my scans again to make sure nothing had been missed. I was even more anxious for the follow-up now.

The day of the appointment, we drive the hour and a half up there and we’re almost late because traffic was horrible. I hadn’t slept well the night before at all, but I just really wanted to know what was going on with surgery. For some reason, I just had a really bad feeling  – it wasn’t until the appointment was over that I figured out why. We meet with a student, who takes the basic info about how I am doing and how literally nothing had changed since our first meeting together.

The doctor comes in a few minutes later and says that he thought all my testing that was recently ordered through my GI doctor (at another hospital, I might add) would have been done by now. Nope, we JUST got it scheduled. He says there’s nothing to really go over until all that’s done. So, then this appointment is a waste of time? Basically – Sorry that no one called to verify. I’m speechless. I ask him why we needed the tests run again – just to see if there is anything else it could be. Wait, are we NOT sure anymore? Well, we know that the compressions are there, but we don’t want to make it worse with surgery if something else could possibly be causing your symptoms. What happened with doing the venogram? I’m okay with scheduling that but if the tests show something else, then we can pursue that first. Then why are you sending me for a surgery consult with your colleague, who is supposed to assist in the surgery that  you don’t want to do because it could potentially make my symptoms worse? 

I didn’t say the last part, of course, but I left my appointment both angry and frustrated yet again. I’m so tired of doctors changing their minds on what they want to do. So far, all they keep doing is running medical test after medical test, not providing any treatment.It just feels like a giant waste of time. I came home and vented about this on one of the support group pages I follow and I’m pretty sure that  someone pinpointed exactly why this doctor changed his mind so suddenly. It’s happened to her too, multiple times. Because of the complexity of the surgeries, on top of the fact that it would be multiple interventions at a time and with more than one doctor performing, they get “scared” to “make it worse”. They begin stalling by ordering more tests or try this medication, even though it’s already been done – just to buy time. To me, it makes sense, although I can never prove it.

My venogram is actually scheduled now for December 3 after my continuous testing supposedly ends. We’ll see if that even happens. If it doesn’t, I don’t know what I’ll do at this point.

A new Primary Care doctor

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In the midst of all the other doctor drama, I also had to begin my search once again for a new primary care doctor. If you remember from early posts (And it’s a sad pictureSay something, I’m giving up on you, I know the shame in your defeat or Oh doctor, doctor), finding a GOOD primary care doctor has been the biggest challenge in my quest of finding a diagnosis. There’s something in this town that make doctors… oh, what’s the word?  oh yeah… WORTHLESS. Which is why I travel so far to see specialists, despite living in a relatively large city. But seeing as my past PCP disappeared out of nowhere, I had no choice but to find a new primary care physician (although to be honest – I only stayed with her out of convenience, despite that she worked in the worst medical office consisting of the rudest staff to I’ve encountered to date).

Earlier in the year when I had tried to find a new doctor, I originally called a clinic that ended up not taking my insurance, but the receptionist who answered actually was on the same insurance plan. She told me to try one specific clinic because they were great and she had felt my frustration with quite a few of the other doctors in town. Glad it’s not just me. However, after the fiasco with the few offices I had tried back in the Spring, I was too worn out to try and find a new doctor, so I never called them. Luckily, I kept their number, though.

I was so worried about having to go through this process again and I really worked myself up about seeing a new doctor. But ultimately, he turned out to be better than expected. The clinic was both clean and nice. The receptionists were friendly and organized as well, which was a huge difference from the last practice. The wait wasn’t too long and the doctor spent a great deal of time with me, learning about my diagnoses, comparing “expected symptoms and treatment” to my own personal experiences, and he actually did an exam. He asked me if there was anything else I needed him to do, to which I replied I had short-term disability and work paperwork that I needed to have filled out because they wanted me back at work following this appointment (which had been stressing me out over the last few weeks, to say the least).

What amazed me, though, was the fact that he refused to fill them out. Instead, he wrote them a letter saying that I am really sick with multiple complicated diagnoses and it could take a while to get a treatment plan going before I will be well enough to work again. I was in shock. He believed me! I can’t even put into words how grateful I am for him taking the time to sit down with me and listen to what I had to say. He scheduled me for a follow-up in a month just to see how things are progressing with my specialists and ordered my general, yearly bloodwork to make sure nothing is missed along the way. I’m so glad to finally have a good doctor that is also close to home.

Work and disability

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Off the advice of my therapist, I decided to start my social security disability claim over the summer just in case I wasn’t able to get back to work as fast as I had originally thought. It was a good thing I did since I currently have no expected return to work date now. So far, the process hasn’t been too bad. However, a few weeks ago, I received a letter in the mail stating I was being sent for a psychiatric evaluation. I was stunned and worried. Did they think it is all in my head? Do they think I’m lying about my symptoms? why are they doing this? Needless to say, I was worried. I talked with my therapist about the neuropsychologist that was doing my mental comprehensive exam with, and she, unfortunately, didn’t have the best news for me since she was familiar with him. Great. Again, I overprepared myself with tons of documents and information to bring to the exam, especially since she told me to bring proof of a diagnosis so he doesn’t label me as having a somatization disorder. But, overall, I think the appointment went well. Despite the fact that he wasn’t exceptionally outgoing or friendly, he seemed to identify with my answers to his questions and stated that I was very pleasant and intelligent. So I am hoping this appointment helped my case, instead of hurting it. Still, I worry about my future without disability at this point, especially considering that the number of appointments and testing don’t look like they’ll be decreasing any time soon.

Later in the afternoon, following my appointment for the CE exam, I received a call from my manager at work. As soon as I picked up, I knew something was wrong. He conferenced in a woman from the human resources department and instantly I knew – I was getting fired. I held back my tears as they advised me that since I had no expected return date that they would need to let me go because of business needs. I was heartbroken, but I understood. Still, it didn’t stop oncoming fear and panic inside me. My thoughts were racing through my head. I felt like I couldn’t breath.

What am I going to do?

I’ve never been fired from a job before.

How is this going to affect my short-term disability claim?

Or the long-term disability claim that was just initiated the day before?

How am I going to live? or survive?

We need to renew our lease next month…

What am I going to do?

I was beside myself. More importantly, I was ashamed. Up until now, I could still say I had an amazing job and that I was just on medical leave. Now I’m just unemployed. I have worked consistently since the age of 15, no matter the symptoms but only started having real trouble with maintaining work this past December when symptoms got out of control. I felt like a failure. Luckily, though, I am still eligible to continue my short-term disability benefits and finish my long-term disability application since I was on medical leave during my termination. Still, so much more has been lost than gained and it’s been difficult to remain positive.

To top it all off, getting fired has added even more work for because now I have to write  a letter to each and every state asking to return my insurance licenses so that I don’t receive fines for not continuing education or fees, in addition to the separation paperwork, returning equipment, moving and changing all of my policies. And remember, I still have all of these doctors appointments and medical testing scheduled multiple times a week, maintaining my current STD claim, finishing up the paperwork and processing for both SSDI and LTD, and finals for school. I’m about to pull what little left of hair I have left out of my head, I swear. But somehow, like everything else, it will get done. I’m just not sure how to do it all exactly, but I have no choice but to find a way.

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And last but definitely not least, 

I received yet another diagnosis.

But seeing as this post is already too long, on top of the fact that I am exhausted from all that has been going on, I’ll update this information with more specific posts on some of the medical testing I’ve been going through. Thank you all for listening and allowing me to vent about everything going on. In the meantime, I’ll try not to let all of this bother me,  although that is easier said than done. I just need to focus and get it all done the best  that I can. Really, it’s the only thing I can do.

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Fragile by Jennifer Marks

There’s a hole at the bottom of this cup
I want to fix it so I can fill it up
There is sand where the flowers used to be
I was happy then and you were here with me

Feeling kind of fragile lately
I know only I can save me now
I’m not hoping
There’s no use praying
I know only I can save me now
Feeling kind of fragile

There is dust in the seat where you once sat
Time is cruel it’s too stubborn to turn back
My heart’s so heavy it will never float
I’m holding on, cause I’m afraid to let go

Feeling kind of fragile lately
I know only I can save me now
I’m not hoping
There’s no use praying
I know only I can save me now
Feeling kind of …

Fragile, Quiet
Feels like I’m dying
Crystal waters
Pulling me under
My rage is like thunder

Feeling kind of fragile lately
I know only I can save me now
I’m not hoping
There’s no use praying
I know only I can save me now
Feeling kind of fragile.

IIW15: A Battle Between Visible and Invisible Illness

Why the Fight?

You may have seen it all over the news this year: Nasty letters left on the cars of those suffering with invisible disabilities. These are just a few of the examples:

How much you want to bet that there were plenty of other instances, just like those above, that were not reported in the news?

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Let me start by saying, I’m not undermining your feelings towards those who thinks it’s okay to use these spots for convenience – because it’s not. Trust me when I say that I do understand the frustration you must feel when others abuse handicapped parking spaces, essentially taking away these reserved spots that provide you with the accessibility needed. It’s indescribable, really.

However, did you even bother to take the time before writing such a nasty note to actually look for a legitimate parking permit? All of these cases had them – and it’s not like they just hand them out to just anybody.


Information retrieved from care.com

How to Apply for A Handicapped Parking Sticker:

“When you have a disability, there are little things you can do to make your life easier. For example, do you have trouble walking or do you use a cane, wheelchair, walker or other device to get around? Then you’re probably eligible for a handicapped parking sticker.

This simple permit is a must if you have difficulty getting around or if you’re the primary caregiver for someone who has a physical disability. Think of all those shopping trips and doctor’s visits you go on. Being able to park near a front door can save lots of time and energy.

But how do you get one? Here’s a step-by-step guide.

  1. Check if You’re Eligible
    Most people actually aren’t aware that they’re eligible for a handicapped parking permit. They may not realize their disability qualifies them for one or they may not want to admit to having a disability in the first place. The eligibility regulations vary by state and city, but you may be entitled to one if you use portable oxygen or have problems walking.(Click on your state at the bottom of this article to find out more information for your area.)
  2. Know Your Options
    There are different permits available — some for short-term disabilities and some for longer periods of time — depending on your state. Some states offer license plates with permanent handicapped symbols on them, while others provide a placard that can be hung from the rear-view mirror. The tag you should apply for depends on your situation and disability. Temporary/short-term permits usually last for about six months, while permanent parking stickers may be valid for up to two years.If you’re a veteran with a service-connected disability, you may also be eligible for disabled veteran permit. The fees are often waived for these types of permits.
  3. Get an Application
    Check out the website for your local DMV (or the city, town or village clerk that issues permits in your area) and read up on the rules regarding available tags, associated fees and what’s required in the application process. Then print out an application.
  4. Talk to a Doctor
    As soon as you think you or a loved one might benefit from a handicapped sticker, make a doctor’s appointment to discuss parking tag eligibility. (Depending on your disability, you may need to meet with a medical doctor, osteopath, podiatrist, chiropractor, optometrist, registered nurse, etc.) Speak candidly with your doctor and discuss how this permit might help you and your family.If you’re eligible, the physician will fill out the application you printed out or provide a note saying why you need the permit. (Some doctors have these applications available in their offices, so you may not need to print it out.)
  5. Apply for the Permit
    Usually, the disabled person must apply for the handicapped sticker — either online or through the mail. You’re applying for a permit for a person, not a car itself. You can usually ask for permits for several cars all at once.It generally takes about a month to process an application and receive relevant tags or plates. Plan accordingly, especially if you know ahead of time that you might need a temporary tag for a scheduled surgery.
  6. Use the Permit Properly
    There’s a big problem with handicapped parking fraud — people who don’t have disabilities use the permits to score better parking spots. So make sure you read your state’s rules carefully. What areas can you park in? Does the permit-holder have to be in the car? What about if you’re dropping someone off or picking them up? Is the permit good for traveling in other states?
  7. Renew Your Permit
    Renewing also depends on your state. Permits, tags, stickers and license plates all have varying expiration dates — and the renewal process differs depending on whether you have a permanent or temporary sticker. Some tags automatically renew, while others require you to re-certify you’re eligible for a handicapped permit.
  8. Get a Handicapped Parking Sign Some areas let you designate a handicapped parking spot in front of your home. Check with your city or town’s Disability Commission for more information.
  9. Learn the Rules in Your State

To say I’m disgusted with this epidemic is an understatement.

I honestly thought that you would understand what it’s like to feel pain and the hardship that it causes. To know how it feels to be judged by others. Yet here you are – doing exactly that.

This behavior is not okay and it needs to change. Having a visible disability doesn’t make you more privileged or give you the permission to judge others. If they did the same to you, would it be discrimination? How would you feel it you had to explain yourself or your disability everywhere you went? We already have to do that enough. With the doctors who don’t believe we are sick. With the family or friends who think we are just being lazy or dramatic. Or our place of employment when they wonder why we are absent so much. And now – to strangers.

Individuals with invisible illnesses are tired of having to validate themselves – proving how sick they really are. We are constantly made to feel guilty because of the limitations set by our conditions. Always pushed to do things we shouldn’t do just because we want to look or act normal. Could you deal with this every day? Would you live like this?

Please understand, people with invisible disabilities also benefit from the use of these spaces. Let me give you an example: Some days it feels almost impossible just to go to the store. You really don’t want to go – but you know you have to pick up your prescriptions. First you have to get out of bed and get dressed. Then you not only have to drive yourself there, but now you have to get out of the car, walk all the way across the parking lot, and head to the back of the store to get to the pharmacy. Perhaps your muscle aches, you have extreme fatigue, and you have passed out more than once that day. It takes your entire strength just to keep moving. *Please don’t pass out* *Don’t throw up* *I feel like I am dying* But you do it anyways because without these prescriptions, you know that you’ll only feel even more terrible than you do now- or worse- you could end up in the hospital or even dead. So being that much closer to the door, rather than having to trek across a large parking, will ultimately save you some spoons (see Spoon Theory). It really is a lifesaver.

So the next time you decide to leave a note on someones car, I urge you to just think about the things that YOU can’t see.

Just because someone “doesn’t LOOK sick” doesn’t mean that they AREN’T sick. Looks really can be deceiving.

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There are millions (maybe more) of individuals in the world living with an invisible illness. If we could band together – both visible and invisible – imagine what we could do to change the lives of those living with ANY type of disability. Think about it.

I know it’s a cliche´ to say, but I’ll say it anyway.

Truly, you can’t judge a book by it’s cover. 

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Keep Your Head Up, The Colors Are Beautiful

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Lot’s of new things on the horizon, so I figured I’d give a short update.

  • On UndiagnosedWarrior: Been updating and organizing pages, adding new information, noting some tips and tricks, and other things here and there. Take a look around and let me know what you think. I have some good ideas and really want to add more content for those looking for a diagnosis, as well as those who have already been diagnosed. And, of course, keeping you updated on my search for a diagnosis. 
  • On Life: I’m officially back out of work, but this time my short term disability has been approved. After the whole mess with getting a Lupus diagnosis, then having it taken away, then given back by a different doctor, I’m still confused as to whether or not I ACTUALLY have it.  I have a few tests pending and some recent tests that have come back with very interesting results (*Hint: It was enough to finally PROVE my disability claim). I’m waiting for the doctors to call to discuss their thoughts, so I don’t want to jump the gun on yet another diagnosis, so I’m going to wait to post, but I’ll update as soon as I can.

As for now,

I just want to leave you with the strength in knowing

 that all your struggles, all your hard work, and your persistence to keep looking 

IS WORTH IT!

I know it is hard to stay patient and that you are tired of waiting,

especially when  you have been sick for so long.

But waiting is always the hardest part. 

Keep trusting your instincts. 

Trust the journey.

You know your body better than anyone.

The answers lie WITHIN YOU.

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“Keep your head up
The colors are beautiful
When they say give up
Turn up your radio
All the sentimental memories you own
When they say grow up
It’s just like a funeral
Keep your head up
The colors are beautiful
Keep your head up
It’s all right in front of you
When they say wake up
You’re breaking ridicule
When all the sentimental memories you own
Keep you trapped inside your room there all alone

And it feels like
It feels like you’re lost
And it feels like
It feels like you’re lost

Is there some way you can be out on your own?
Trust yourself
Don’t waste another day at all

On your own

Keep your head up
The colors are beautiful
And it feels like
It feels like you’re lost
And it feels like
It feels like you’re lost

Is there some way you can be out on your own?
Trust yourself
Don’t waste another day at all

Watch this fade away
Everything fades away
Keep your head up
The colors are beautiful”

(“Head Up” by Sugarcult)