Life After Venography

Recovery from the venogram was much worse than I expected. Originally, they told me I’d be in pain for the next 48 hours and then I’d be fine, but put me on restrictions for 7 days. I guess I didn’t realize how much you actually use your neck, as I could barely move at all for the entire week following. All I could do was sleep. The day after the procedure, I started coughing up blood, as well as blowing it out my nose, and my pelvis hurt more than it had even before the procedure. I also couldn’t see clearly either. It was as if my normal vision (even with glasses) suddenly changed overnight. Worried, I called the hospital, but the on call doctor thought my symptoms were unrelated to the venogram. Just weird they started the morning AFTER the venogram. Not long after I get off the phone with him, the hospital calls back letting me know that I have an appointment for a follow-up in two days (which I didn’t make – I was told to call to schedule). At that point, it was now the weekend, so I called bright and early that Monday morning to reschedule, since I was already scheduled with cardiology (at a different hospital) at the same time.

When I go to the follow-up a week later, the receptionist checking me in tells me that they’ll be calling me shortly for my ultrasound. Confused, I questioned her about it and she said, “Oh, never mind. It is an appointment, but there is no doctor written on the schedule…how odd!Um, okay… that doesn’t sound good, but she doesn’t act concerned so we (my husband and me) take a seat in the waiting room and actually get called back to the exam room rather quickly – I think it was in less than 5 minutes from sitting down. After the nurse does her thing, she says it’ll be just a few minutes until the doctor comes in. After an hour goes by of us waiting in the exam room, the nurse finally comes back in to check up on us, saying that she just realized that it had been just over an hour since we checked in and that the doctor was scheduled for surgery at the time of the appointment… but he should be almost done. About 10 to 15 minutes later, a doctor that looks familiar, but is not MY doctor, walks into the room.

He introduces himself and says he will be helping Dr. J with my surgery and that he assisted with my venogram. Okay, so that’s why he looked familiar. He proceeds to go over the findings of the test by drawing me a picture and telling me, in the most basic way possible, that I have Nutcracker Syndrome. Um, yes, I know. It’s already been confirmed multiple times by multiple doctors. I don’t think he knew anything about me, really. This became more apparent when he then tells me to they want to do surgery to stop my hematuria – only I don’t have hematuria as a symptom and I haven’t since I was in my teens and early 20’s. He seems confused by this and asks me what, exactly, are my symptoms.

I tell him the list (ULQ abdominal pain that can also radiate to the right or pelvic region on both sides, constant nausea, dysphagia, pain after eating, alternating diarrhea/constipation, rectal bleeding with or without mucus or undigested food in stool, dizziness, syncope/pre-syncope, occipital neuralgia, skin rashes, burning sensation under skin, insomnia, sleep apnea, chest pain, asthma/allergies/anaphylaxis, olfactory hallucinations, hair loss, incoordination/balance issues, severe fatigue, heart palpitations, arthralgia and myalgia, muscle and eye twitching, livedo reticularis, nevus anemicus, random swelling of my lymph nodes, and abnormal menstrual cycle before endometrial ablation). I also tell him my current diagnoses aside from the NCS (SMAS, MTS, IBS, Hypoxemia, POTS, Pericardial Effusion, Ventricular and Sinus Tachycardia, Cardiomyopathy, Alopecia, SIBO, and some underlying autoimmune/infiltrative disease that is tricky to diagnose, but the doctors are fighting about it being lupus or not). Maybe it was the number of symptoms/syndromes I named off, I don’t know, but he just kind of brushed it all off since none of it fit with the Nutcracker diagnosis.

Instead, he moved on with the conversation by showing me where all the collaterals are forming (where the body develops new blood circulation pathways to flow through since my renal vein is essentially blocked) and we watch some video from the venogram.

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Photo retrieved from Dr. Scholbach’s Website, 2015

Basically, a lot of my blood is flowing into my lumbar plexus and pelvis, causing the pelvic congestion syndrome.

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Photo retrieved from RIA Endovascular Website, 2015.

The blood that is making it through the renal vein is then going up into the hemiazygous vein.

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The rest of the blood, however, is flowing retrograde toward the IVC, and the doctor says that it’s not likely May-Thurner Syndrome but the retrograde flow instead (although, again, Dr. J said I absolutely had MTS based off my CT Angiography, which we watched together during my consult as well).

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Retrieved from the University of the Cumberlands website, 2015

This doctor then tells me that I have two options to fix the Nutcracker Syndrome; a stent (which I interrupt him and tell him that’s not an option) or the LRV transposition surgery, which they believe, due to my age, would be the best option. I ask him about the SMA Syndrome, which Dr. J said I had based on the CTA as well, but this doctor tells me there’s no way I have that. I tell him that GI surgeon confirmed the angle for SMAS and wrote it down as a diagnosis in my chart, but said he wouldn’t treat it without other proof.

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Retrieved from Dr. Sathaye’s Blog, 2015

Basically, this doctor says that since I have no confirmed blockage they won’t treat it and that they can only treat what they have confirmed – the Nutcracker Syndrome and the Pelvic Congestion Syndrome (they plan to “tie off the vein” where it goes into the pelvis). Great…

We go over the surgery, recovery, etc.  My husband asks him if surgery will treat any of my primary symptoms. He basically stutters, saying there’s no way to know if it’ll help at all, but it may decrease any flank pain, hematuria (which, again, I don’t have) or pelvic pain caused by the PVCS, and that it has to be done. “So none of her primary symptoms?” – “Not likely”. I ask him if this could be causing any of the problems with my heart or the POTS. “Not likely influencing any of that either. I don’t suspect that this surgery will help those problems, but you never know.” We basically end the conversation there.

As the nurse is getting us checked out she says, “For someone with as many symptoms as you, you look really good.”  Excuse me?

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After 20 years of pain and no diagnosis, you learn to hide it pretty well…

 “We have another patient with all the same things as you and she doesn’t look well at all….She is horribly skinny and sick.

Wow.

I didn’t know how to respond to that, so I just said,

“Well I keep my weight up by drinking 1 or 2

high-calorie Starbuck’s drinks a day.

Starbucks?

She doesn’t understand how that’s even possible.

“It’s 500 to 600 calories a drink. Keeps my weight up

and is the reason why I don’t ‘look sick’.”

She’s in shock.

You mean, you don’t eat food?

No… I CAN’T eat food.”

She’s speechless for a moment and then tells me that the doctor’s scheduler will call me to set up a surgery date, before walking us out. Before we left, though, she was nice enough to print out my venogram results so I didn’t have to wait for medical records to send them out by mail.

So, after all of this, I’m at a loss about what I should do.

Primarily, the biggest concern is having a major surgery without fixing my primary complaints first– you know, the ones that have taken away my ability to work and live a normal day-to-day life.

My husband doesn’t want me to have it done because he knows I can’t handle any additional pain on top of what I already have going on (that surgery won’t fix) and he doesn’t think it would be worth it. He also doesn’t trust the hospital, as I do after this whole affair. When the hospital called to schedule a few days later, I told them I would have to call back after I’ve gotten my affairs in order, talked with my other doctors and moved some appointments around, and talked with my school about taking at least one semester off. I also plan to call around to some other doctors out of state to see if they can review my tests, as well as my other doctors, although I obviously didn’t tell them that.

When I called my cardiologist to see if he had any objections or concerns I should be aware of about surgery, he recommended that I wait until my cardiology testing is done because he can’t guarantee I’d be okay with such an intensive surgery or recovery. Still, I need some opinions or input as to how to move forward once I am cleared for surgery. I don’t want to be noncompliant, but this is an invasive surgery and I want to make sure that I don’t do anything to make myself worse or choose the wrong thing. So far, this is one of the biggest medical decisions I’ve had to make.

Nonetheless, I’m losing hope that I’ll ever feel better as it seems to only be getting worse over time, and honestly don’t know what to do about anything anymore. I was so ill last week that I lost 8 pounds in three days from not being able to consume coffee (or food, obviously), but I am running out of tests that can prove the SMA Syndrome in a way that they would accept in order to treat it.

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So what do you think?

Should I move forward with surgery at this location after how they’ve handled everything else?

Is it even worth having the LRV Transposition if it won’t likely help any of my primary symptoms?

 

 

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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30 Things About My Invisible Illness You May Not Know

Invisible Illness Week 2015 

  1. The illness I live with is: Superior Mesenteric Artery Syndrome (SMAS), Nutcracker Syndrome (NCS), May-Thurner Syndrome (MTS), Pelvic Congestion Syndrome (PVCS), and Postural Orthostatic Tachycardia Syndrome (POTS). There’s at least one more condition still undiagnosed – but only time will tell.
  2. I was diagnosed with it in the year: 2015
  3. But I had symptoms since: I’ve had abdominal pain for as early as I can remember, but the real symptoms started around 1997 and have continually gotten worse over the years.
  4. The biggest adjustment I’ve had to make is: Giving up some of the things I love the most – working with animals, going to concerts, hanging out with friends, sports & activities, ghost hunting, traveling, etc. My life is rather limited at the moment.
  5. Most people assume: Before diagnosis most people thought I was sick because of anxiety or stress. Now that I have a diagnosis, a lot of people assume I have a lot of free time since I am I am on medical leave from work. They couldn’t be more wrong. I have anywhere from 1-5 doctor’s appointments or medical testing scheduled every week and my doctors all are an hour and a half away (3-hours round-trip, not to mention appointments/test can be anywhere from 1hr to 5hrs themselves). I also am still in school, since I can do the work on my schedule, and have the rest of life that EVERYONE deals with. Plus running this blog and volunteering where/when I can. My life is full of everything BUT free time.
  6. The hardest part about mornings are: Waking up and getting out of bed. I have trouble sleeping at night, so I am always tired in the mornings. Then when I actually do get up, I’m usually symptomatic and out of it. The minute I climb out of bed, the POTS makes my heart rate increase and blood pressure decrease, causing dizziness, clumsiness, and sometimes syncope. It takes a large cup of coffee and at least an hour to wake up enough to even attempt to get dressed and start my day, which is terrible for early morning doctor appointments as I have to account for this time by waking up an extra hour earlier than a normal person would.
  7. My favorite medical TV show is: Diagnose Me, Mystery Diagnosis, Monsters Inside Me, and House.
  8. A gadget I couldn’t live without is: My cell phone. I do almost everything on it.
  9. The hardest part about nights are: Being unable to sleep because of pain. Night is always the worst. You just lay there, all alone in the dark, with only your thoughts to keep you company.
  10. Each day I take __ pills & vitamins. (No comments, please): Daily: 13 unless I need “emergency meds” which can bring the total upwards of 20 pills or so.
  11. Regarding alternative treatments I:I’m open to try anything, but I go in with a bit of skepticism and I do a lot of research on it (even on traditional medicine) before I’ll put it into my body because I am way too reactive and sensitive to new things.
  12. If I had to choose between an invisible illness or visible I would choose: Invisible Illness. I can hide being sick when it’s necessary or when I don’t feel like explaining myself.
  1. Regarding working and career: I think if you can manage to work and maintain your health then you absolutely should. Unfortunately for most of us, it isn’t feasible to keep up with a 40-hour set work schedule, making it one of the first things to go.
  2. People would be surprised to know: I have symptoms every single day. Some days are better than others, but never do I truly experience an actual break. The symptoms can change from day-to-day, or even hour-to-hour, allowing me to “tolerate” things better at certain times. Still, even though I am in constant pain and feeling nauseous, I still get things done because I have to. I’ve learned to manage and fight against my body just to have some sense of “normal”.
  3. The hardest thing to accept about my new reality has been: Not having the support of certain loved ones. They haven’t to understand my diagnoses. They hardly ask me how I am feeling, or when they do they don’t actually listen to the answer. They don’t read my blog or like my updates on Facebook, but they’ll comment on other people’s statuses or share stranger’s stories about things like cancer or other acute illnesses. It makes me feel completely worthless and invisible sometimes, but I try to not let it bother me since I do have the love and support of so many others.
  4. Something I never thought I could do with my illness that I did was: Continuing to be persistent, despite being turned away from almost every direction. I kept pushing for the doctor’s to listen to me (despite normal lab results) and FINALLY got a diagnosis after all these years.
  5. The commercials about my illness: Unfortunately, my conditions are rare and there are no commercials. One of them (the Nutcracker Syndrome) JUST got placed on the rare disease list after multiple letters sent by people in my support group. How amazing is that? Hoping one day, they’ll all be there.
  6. Something I really miss doing since I was diagnosed is: Being active – either with cheer or roller derby, or even just hiking, swimming, or camping on occasion.
  7. It was really hard to have to give up: Working at the animal hospital. I loved it, but it killed me. When I left, I knew I’d never be coming back because of the strain it put on both my mind and body. I miss it severely.
  8. A new hobby I have taken up since my diagnosis is: Blogging 🙂
  9. If I could have one day of feeling normal again I would:I would love to be a patient advocate and help other’s navigate the healthcare system to find their diagnosis because it is really hard to do alone. Or counsel those with chronic illness. And of course, volunteer (at the very least) with animals again.
  10. My illness has taught me: To be hopeful. To see the struggle in others and to be kinder. To remain strong and to believe in MYSELF. But most of all – to know that I am capable of never giving up, despite the odds against me.
  11. Want to know a secret? One thing people say that gets under my skin is: “Are you sure you’re not just stressedor that it’s related to stress…?” Super Sure – Thanks for trying, though.
  12. But I love it when people: Ask me about my conditions, how I’m feeling, or what the doctor are saying. It not only makes me feel validated, but it shows that you care and are interested in my well-being.
  13. My favorite motto, scripture, quote that gets me through tough times is:

“It can’t rain all the time” (The Crow).

“Here’s an optimistic thought: You’re not chronically ill, you’re medically interesting”.

“My list of diagnosed rare diseases may keep getting longer, but my determination keeps getting stronger”.

“When life knocks you down, roll over and look at the stars”.

“You are fierce, You’re a survivor. You’re a fighter through and through. Little brave, breathe. There is a warrior within you”

  1. When someone is diagnosed I’d like to tell them: First comes congratulations (usually because they have looked for a diagnosis for a long time). Then, I tell them that it’s all going to be ok because NOW they have the tools to fight against whatever it may be. Having a diagnosis is powerful and EMPOWERING. And last, but not least, that I am there for them in whatever way I can help.
  2. Something that has surprised me about living with an illness is: The lack of compassion from people in general.
  3. The nicest thing someone did for me when I wasn’t feeling well was:I am super lucky because I can think of so many examples, but what comes into my head first are the friends and family who visit me regularly to make sure I’m doing ok or when my husband will get me Starbucks before he comes to wake me up in the morning. Makes my day that much more special.
  4. I’m involved with Invisible Illness Week because: I think it’s important to bring awareness to the lives of those living with an invisible illness and how hard it is to try to live with a chronic illness. I don’t think most people understand, or even try to understand. You are constantly judged – by doctors, by family, by friends, by the public. . Hell, even those with VISIBLE disabilities judge us. It’s not right. Constantly having to prove that your symptoms are real and that you are actually sick, despite appearances. Just because “I don’t look sick” doesn’t mean I am not sick. It’s a bigger deal than you think or acknowledge. People have died because of these conditions. Others will commit suicide because of the pain and poor quality of life they experience. And more than likely, I am never going to “be better”. My only real hope is to be able to manage most of my symptoms so I can have a better quality of life. It’s like my ongoing struggle means nothing because “it’s not cancer” or some other condition you are more comfortable with or know more about. The public’s perception of invisible illness has to change and Invisible Illness Week is a great platform to educate everyone on what it’s really like to feel invisible.
  5. The fact that you read this list makes me feel: Loved.Thank you for taking the time out of your day to learn about me and my illnesses. You will never know how much that means to me – or anyone with a chronic illness for that matter. Thank you –just thank you.

Just stand still, look pretty.

But you don’t look sick…

My illness is only invisible because I decide what you can and can’t see.

Much of living with chronic illness is hidden from the outside world,

in an attempt to be as normal as physically possible.

So unless you live it yourself, you’re blind to it.

But nothing is truly invisible if you make a conscious choice to really open your eyes.

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So what does invisible illness really look like then?

Allow me to show it you.


You can see invisible illness in the things I do each and every day.

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Visible in the adjustments I make just to do everyday things.

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You can see it on the pages of my planner in which I write every appointment and daily to-do list.

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Or in my notebook that I take everywhere with me.

Otherwise, I will forget everything.

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Or the time I spend doing medical research,

hoping to find an answer for what the doctors can not find.

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You see it in the amount of caffeine I drink, just to stay awake.

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In how long it takes me to do the housework and laundry.

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Or how hard it is just to run simple errands.

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You can see it sitting on my bookshelf.

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In number of times I wash my hands in a day.

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Or the fact that a good portion of my time is spent hidden away in a bathroom.

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Illness doesn’t leave room for hobbies, much less the things that are fun.

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Invisible illness is seen in the never-ending doctor’s appointments and medical testing.

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Or the procedures I’ve had, despite knowing whether they will work or not.

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You see it in all the blood draws the doctors run regularly, trying to get a diagnosis.

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And the therapy appointments I attend just make sure I am not crazy.

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You see invisible illness in all the paperwork I have to complete and keep track of.

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In the two three inch binders that hold my medical records

which I need to bring to every doctor’s appointment.

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-one for clinic notes, one for labs/testing-

You see it in the summaries I put together to keep all my doctors on the same page.

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Or in the advanced directives, living wills, and Do Not Resuscitate orders.

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My illness is clearly visible in the medications I take  every day.

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You can see it in my oxygen concentrator and tank that help me to breath.

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In the duo-nebulizer that I keep at home

just in case an attack comes on and I can’t get to the clinic in time.

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 In my monitoring tools -in my blood pressure cuff and oximeter.

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In my heating pad and humidifier.

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My invisible illness is hidden deep inside my travel case,

full of emergency medications and supplies for when I leave the house.

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And in the lessons my husband has had to take to administer medication

or help me in case I can’t help myself.

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You see my invisible illness in the symptoms I try to conceal and hide.

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Just because it’s not easy to see, doesn’t mean it’s not there.

Do I look sick enough now?

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Because this is how I look at home, behind closed doors.

In real life, invisible illness is not so invisible afterall.

Remember that the next time you judge someone,

when you don’t believe they are as sick as they make out to be,

when you make them prove how sick they truly are,

or say “but you don’t look sick…”

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