Reblog: How Pansy Got on Medicaid By Being Smart, Scrappy & Persistent

This article covers one of the best resources available for Undiagnosed Patients. There’s a common misconception that patients who are working or have a spouse/partner that makes too much money cannot qualify for assistance to help pay for the costs of medical care but that’s actually not true. I’ve personally been recommending the Buy-In Programs for years now because it literally saved me from financial ruin in the process of searching for a diagnosis. Getting answers usually requires extensive medical testing, multiple specialty office visits, and different therapies or treatment – which can easily cost a small fortune, even if you have “good” insurance. 

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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!

I swear I knew it all along…

After my venogram in December and the fiasco at my follow-up appointment to discuss surgery, I had pretty much given up hope that A) we had finalized a diagnosis and B) that I would ever get better. Unfortunately, my next round of follow-ups with the specialists weren’t much better.

By the time my follow-up with gastroenterology had rolled around at the end of January, I knew there really wasn’t much left to do as every GI test had been run up to this point and I was expecting to be let go after a full year of testing with really no results. As I’m sitting there in her office, explaining how once again I won’t be having surgery as expected, she asks me why they offered me the one surgery in the first place if they knew it wouldn’t help. I honestly have no idea what to tell her – Why don’t you ask them?  – I don’t dare say that out loud, though.I look over to see my husband is once again fidgeting in his chair, I can tell he’s getting angsty. However, I wasn’t anticipating what happened next.

In almost slow motion, I watched him mouth the words …because nobody takes her pain f***ing seriously….one syllable at a time. He didn’t just say that out loud, did he? The doctor immediately asks him to leave. Okay, so I guess he really did say that out loud after all. I can tell my doctor was not amused as my husband  gets up from his chair and storms out, and I just sit there, on the exam table, in shock. Now, what? I wait for her to say something but I’m having a hard time holding back the tears in embarrassment and frustration. Really, though, my husband was right – no one does take my pain seriously and I’m becoming more and more tired each day. I really just want to go home at this point.

But somehow, the torture isn’t over for today. She says she wants me to have an anorectal manometry done to rule out pelvic floor dyssynergia for constipation that I have on and off. This is a joke, right? Nope, guess not. She thinks it’s in my head…. that maybe somehow I forgot how to have a bowel movement… I think she is far off with diagnosis. She thinks I should do it anyway. I agree… knowing I”ll prove her wrong… but finally able to leave. I’m not sure how this could get any worse, really… but somehow it always does.


WHAT IS ANORECTAL MANOMETRY?

(Retrieved from the Motility Society Website)

Anorectal manometry is a test performed to evaluate patients with constipation or fecal incontinence. This test measures the pressures of the anal sphincter muscles, the sensation in the rectum, and the neural reflexes that are needed for normal bowel movements.

PREPARATION

Give yourself one or two Fleet® enemas 2 hours prior to your study. You can purchase the Fleet enema from a pharmacy or supermarket. You should not eat anything during the two hours prior to the procedure. If you are diabetic, this may involve adjusting your diabetic medications. You may take regular medications with small sips of water at least 2 hours prior to the study.

THE PROCEDURE

The test takes approximately 30 minutes. You will be asked to change into a hospital gown. A technician or nurse will explain the procedure to you, take a brief health history, and answer any questions you may have. The patient then lies on his or her left side. A small, flexible tube, about the size of a thermometer, with a balloon at the end is inserted into the rectum. The catheter is connected to a machine that measures the pressure. During the test, the small balloon attached to the catheter may be inflated in the rectum to assess the normal reflex pathways. The nurse or technician may also ask the person to squeeze, relax, and push at various times. The anal sphincter muscle pressures are measured during each of these maneuvers. To squeeze, the patient tightens the sphincter muscles as if trying to prevent anything from coming out. To push or bear down, the patient strains down as if trying to have a bowel movement. Two other tests may be done: first, an anal sphincter electromyography (EMG), a test to evaluate the nerve supply to the anal muscle; second, measurement of the time it takes to expel a balloon from the rectum. After the examination, you may drive yourself home and go about your normal activities.

Anal Sphincter EMG

Anal sphincter electromyography (EMG) is recorded with a small plug electrode placed in the anal canal. The patient then is asked to relax, squeeze and push at different times. The anal sphincter muscle electrical activity is recorded and displayed on a computer screen. Anal sphincter EMG confirms the proper muscle contractions during squeezing and muscle relaxation during pushing. In people who paradoxically contract the sphincter and pelvic floor muscles, the tracing of electrical activity increases, instead of decreasing, during bearing down to simulate a bowel movement (defecation). Normal anal EMG activity with low anal squeeze pressures on manometry may indicate a torn sphincter muscle that could be repaired.

Balloon Expulsion Test

For this procedure, a small balloon is inserted into the rectum and then inflated with water. The patient goes to the bathroom and tries to defecate (expel) the small balloon from the rectum. The amount of time it takes to expel the balloon is recorded. Prolonged balloon expulsion suggests a dysfunction in the anorectum area. What can be learned from anorectal manometry? The anal and

WHAT CAN BE LEARNED FROM ANORECTAL MONOMETRY?

The anal and rectal area contains specialized muscles that are helpful to regulate proper passage of bowel movements. Normally, when stool enters the rectum, the anal sphincter muscle tightens to prevent passage of stool at an inconvenient time. If this muscle is weak or does not contract in a timely way, incontinence (leakage of stool) may occur. Normally, when a person pushes or bears down to have a bowel movement, the anal sphincter muscles relax. This will cause the pressures to decrease allowing evacuation of stool. If the sphincter muscles tighten when pushing, this could contribute to constipation. Anal manometry measures how strong the sphincter muscles are and whether they relax as they should during passing a stool. It provides helpful information to the doctor in treating patients with fecal incontinence or severe constipation. There are many causes of fecal incontinence. Weak anal sphincter muscles or poor sensation in the rectum can contribute to fecal incontinence. If these abnormalities are present, they can be treated. Biofeedback techniques using anal manometry and special exercises of the pelvic floor muscles can strengthen the muscles and improve sensation. This can help treat fecal incontinence. There are many causes of constipation. Some involve sluggish movement through the whole colon, whereas others involve the anal sphincter muscles. In some patients with constipation, the anal sphincter muscles do not relax appropriately when bearing down or pushing to have a bowel movement. This abnormal muscle function may cause a functional type of obstruction. Muscles that do not relax with bearing down can be retrained with biofeedback techniques using anal manometry.

Risks of Anorectal Manometry

Anorectal manometry is a safe, low risk procedure and is unlikely to cause any pain. Complications are rare: it is possible that a perforation (tearing) or bleeding of the rectum could occur. Equipment failure is a remote possibility. If you are allergic to latex, you should inform the nurse/technician before the test so that a latex free balloon can be used.


Let’s just say I was less than thrilled to have to do this test. Just the idea of having to take two fleet enemas and administer them on my own was enough to get me to freak out. Not to mention, since the test was over an hour and a half drives away, they told me to do it the night before. I was still petrified that I would have some embarrassing accident for sure. Not only did the cleansing make me super sick and dizzy, passing out every few minutes, but also had a lot of pain and bleeding afterward as well. It was almost as bad as the colonoscopy prep, only luckily I didn’t have to drink anything. Up until five minutes before leaving, I was still passing a good amount of blood. Nevertheless, I went to my scheduled appointment anyway.

Luckily, my nurse was very nice and calmed me down as I was very tense going into this test. Still, I was in a lot of pain and worried I’d embarrass myself so I was quite reserved. Along with using a balloon they also did the sponge test to see if I could “pass it”. Let me tell you, it felt like I was trying to pass sandpaper. It was horrible and I was in tears. The nurse tells me everything was within normal limits but a doctor would double-check my results to be sure. I figured my test would be normal anyways and I was just happy I was able to go home to recover.

When my follow-up with GI came around in March, I was far from prepared when the doctor told me that my manometry was positive and that I did, in fact, have pelvic floor dyssynergia. Excuse me, what? She’s sending me biofeedback therapy twice a week. Great, I think, just what I have time for. I honestly don’t know how this is possible based on my symptoms, but I schedule therapy anyway.

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After weeks of going to biofeedback therapy twice a week, my symptoms were anything but better. In fact, the extra added stress of trying to make it to therapy twice a week, on top of everything else, likely made everything worse. It was actual torture and I was starting to feel like this was punishment for my husband disrupting the appointment. The therapist also focused more on relaxing my vaginal muscles more than relaxing anything else, which I found to be useless in all honesty. How was this teaching me how not to be constipated, again? They kept asking me if I was eating – of course I’m not eating, that’s what causes the pain, but nobody listens to me. The honest truth, each and everyone one of my muscle in every area of my body  hurts. They are tense because I am always in intense pain every single day. I’m getting angry. I ask for a copy of my test results because I honestly don’t understand how I have this condition in the first place and all the results in biofeedback therapy are coming back as normal.

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When the report finally comes in, my test was borderline at very best. I knew it! I likely didn’t have completely “normal” results because I was in pain while “pushing” and now I’m really angry that I have wasted my time.

Within a few hours of reading the test results, I get a message from the radiologist that I had sent my GI scans to a few weeks back to review for me. I  had asked him to look at them for me since every doctor kept denying that I had superior mesenteric artery syndrome when the reports kept saying I had it, or the doctor would say I have the right angle for the condition but because I didn’t have dilation in my other GI scans, I couldn’t have it. Sure enough, the radiologist had confirmed not only the angle and the aortomesenteric distance, but the dilation of my duodenum was missed in three separate scans.

According to Karrer et al. (2015), the “CT criteria for the diagnosis of superior mesenteric artery syndrome include an aortomesenteric angle of less than 22 degrees and an aortomesenteric distance of less than 8-10 mm” (para. 1). My aortomesenteric angle was 17 degrees and my aortomesenteric angle was 4mm.

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When I went to my next biofeedback appointment, I share the diagnostic news with my therapist. She asks me if biofeedback has helped at all, which I of course reply that it hasn’t. She feels like the diagnosis is incorrect as well and decides to dismiss me from therapy. I have yet to follow-up with GI doctor but I have an appointment scheduled with her in a couple of weeks. Not sure how this is going to go, but I think this will be the last time that I see her – officially. Things were missed in my testing that was super important and  I could have been treated over a year ago when the testing first mentioned the findings of all these conditions. Again, if only these doctors would have listened to me or checked the scans themselves. My husband was right, despite his behavior that day. On top of it all, I was diagnosed with a condition that I feel was more of a punishment than something I believe the doctor would honestly never think that I have since I do not have 99% of the symptoms of pelvic floor dyssynergia.Needless to say, it’s going to be interesting to an interesting follow-up. Maybe I’ll bring my husband with me one more time…

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References:

Karrer et al. (2015). Superior Mesenteric Artery Syndrome Workup. Retrieved from http://emedicine.medscape.com/article/932220-workup

Motility Society (2005). Patient Information on Anorectal Monometry. Retrieved from http://www.motilitysociety.org/patient/pdf/Anorectal%20Manometry%20Patient%20Information%208%205%202005.pdf

 

A Review of my Medical Journey From the Last Year

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Since restarting my search for a diagnosis in February of last year when I started at the research hospital, I’ve been through a lot of doctors and a lot of medical testing.

Well, it got me thinking –  Just how many tests have I done?

 Being as OCD as I am, I decided to look through my list of notes and test results so that I could write it all down (in list form of course). Eventually, I’m hoping to upload some of my test results – along with an UPDATED diagnoses list – for comparison.


Doctors I’ve Visited

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Primary Care Doctors:

  1. PCP-A
    • Scarred and butchered my scalp biopsy (with no anesthetic, by the way), forgot to order tests, couldn’t fill out paperwork, the office staff was horrible, the list goes on and on…
  2. PCP-B
    • Told me she’d review my record and call me with a plan- never called after multiple attempts over 2 months. I went as far as to file a complaint with the office manager, who promised me at least a call, which never happened.
  3. PCP-C
    • Told me I was simply dehydrated and depressed, despite having initial diagnoses at the time.
  4. PCP-D
    • FINALLY – a good PCP and my current doctor.

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Medical Specialties:

  1. Vascular Surgeon #1
  2. Vascular Surgeon #2
  3. Vascular Surgeon #3
  4. Neurology #1
  5. Neurology #2
  6. Dermatology #1
  7. Dermatology #2
  8. Cardiologist
  9. Electro-cardiologist
  10. Immunologist
  11. Rheumatologist
  12. ENT/Allergy
  13. Gastroenterologist
  14. GI surgeon
  15. Urologist
  16. Gynecologist #1
  17. OGynecologists #2
  18. Physical Therapist
  19. Optometrist
  20. Psychologist
  21. Neuropsychologist
  22. Chiropractor
  23. LCSW
  24. Nutritionist

Procedures (Under Sedation)

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  • April 2015 – Esophageal Dilation and Internal Biopsies
  • May 2015 – Endometrial Ablation
  • December 2015 – Venography

Medical Testing and Imaging

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2015:

March

  • CT Abdomen & Pelvis
  • Pulmonary Function Tests – Pre & Post
  • Spirometry
  • Allergy Test – Skin Scraping

April 

  • Abdominal X-Ray
  • Tailored Barium Swallow
  • Colonoscopy & Endoscopy
  • X-Rays of both Ankles

May

  • Abdominal Ultrasound RUQ
  • Gastric Emptying Study

June

  • CT Angiogram Abdomen & Pelvis
  • Electroencephalogram (EEG)
  • Spirometry
  • Fecal Cultures

July

  • Electrocardiogram (ECG)
  • Echocardiogram with Agitated Saline

August

  • Skin Biopsy
  • Cardiac MRI
  • Exercise Stress Test
  • Holter Monitor
  • Spirometry

September

  • X-Ray of Spine

October

  • Sitz Marker Study
  • Upper GI Series
  • Small Bowel Follow Through
  • Hydrogen-Methane Breath Test
  • Spirometry
  • Abdominal X-Ray Supine

November

  • Hepatobiliary (HIDA) Scan
  • Electrocardiogram (ECG)
  • Holter Monitor
  • Echocardiogram

December

  • Venography

2016:

January

  • Renal Ultrasound

February

  • Anorectal Manometry
  • MRI Abdomen

March

  • Tilt-Table Test
  • Electrocardiogram (ECG)

April

  • MRI Pelvis
  • MRI Head/Brain

May 

  • Transvaginal Ultrasound
  • Renal Ultrasound
  • Electroencephalogram (EEG)

June

  • Transvaginal Ultrasound
  • CT Maxillofacial

Blood and Urine Screening

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  • Urinalysis and Urine Cultures
  • Routine Blood Screens:
    • Comprehensive Metabolic Panel (CMP)w/ and w/o eGFFR
    • Complete Blood Count (CBC) w/ and w/o Differentials
    • Electrolyte Panel
    • Liver Panel
    • Kidney Function Tests
    • Celiac Disease Panel
    • Thyroid Screens
      • TSH
      • TSH 3rd generation
      • T4
    • Electrolyte Panel
    • Lipid Profile
    • Cholesterol Levels
    • Serum Vitamin Assays
      • Vitamin D
        • Total
        • D3
        • D 25-Hydroxy
      • Vitamin B12
      • Folate/Folic Acid
      • Calcium
    • C-Reactive Protein
    • Antinuclear Antibody Panel (ANA)
    • Serum Iron Testing
      • Iron and Iron Binding Capacity
    • Rheumatoid Factor
    • Creatinine with eGFR
    • Erythrocyte Sedimentation Rate (ESR)
    • Amylase
    • L-Creatinine
  • More Specialized Blood Screening:
    • Antibody Screening
      • IGA
      • IGE
      • IGM
      • IGG
      • CK
      • CS
      • Tissue Transglutam AB IGA
      • IGE-RAB, Chronic Uticaria
      • IGE Receptor Ab
      • DNA AB (DS)
      • anti-RO/SSA, and Anti-LaSSB
      • CCP Antibodies
      • Beta-2 glycoprotein IgGG and IgM
      • Cardiolipin
    • Sjorgen’s SSA
    • B. burgdorferi Screen Rflx
      •  B. burgdorferi Ab, IgG,IgM
      • B. burgdorferi Ab, IgG (WB)
      • B. burgdorferi Ab, IGM (WB)
    • Growth Hormone Somatotropin Test
    • Cortisol (AM)
    • Blood Clotting Tests
      • Prothrombin Time (PT)
      • International Normalised Ratio (INR)
      • Dilute Russell’s Viper Venom Time (dRVVT)
    • L-Protein Electrophoresis
    • Nutritional Panel w/ Prealbumin
    • Blood Typing

There’s Hope In Front Of Me

Does everyone with a chronic illness feel like they’re drowning in medical appointments or is it just me?

Lately, it feels as if they’re never-ending…

Take this last week, for example – I had 6 medical appointments. The week before, I had 6 appointments as well. This upcoming week, I have 5 scheduled. I originally had 7 but I was released from physical therapy on Friday (long story, which I’ll update at another time). All  of April was pretty much the same thing and the rest of May isn’t looking that much better. Honestly, I’m so exhausted from trying to manage all of these appointments and there is barely  time to think, let alone do, much of anything else (e.g. school work). It feels like I’m never going to get a break at this point – and it’s really not helping my symptoms either. The only good part is that we’re finally starting to make some progress.

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I have a few new diagnoses and some possible new treatment options to look forward to, including the possibility of a few surgeries. Although I was skeptical at first, 2016 does seem to be my year after all – it just got off to a slow start I guess. If nothing else, all of this forward motion has given me hope once again.

Hope In Front Of Me

By Danny Gokey

I’ve been running through rain
That I thought would never end
Trying to make it on faith
In a struggle against the wind
I’ve seen the dark and the broken places
But I know in my soul
No matter how bad it gets
I’ll be alright
There’s hope in front of me
There’s a light, I still see it
There’s a hand still holding me
Even when I don’t believe it
I might be down but I’m not dead
There’s better days still up ahead
Even after all I’ve seen
There’s hope in front of me
There’s a place at the end of the storm
You finally find
Where the hurt and the tears and the pain
All fall behind
You open up your eyes and up ahead
There’s a big sun shining
Right then and there you realize
You’ll be alright
There’s hope in front of me
There’s a light, I still see it
There’s a hand still holding me
Even when I don’t believe it
I might be down but I’m not dead
There’s better days still up ahead
Even after all I’ve seen
There’s hope in front of me
There’s a hope still burning
I can feel it rising through the night
And my world’s still turning
I can feel your love here by my side
You’re my hope
You’re the light, I still see it
Your hands are holding me
Even when I don’t believe it
I’ve got to believe
I still have hope
You are my hope