My Hysterectomy at 28, My Choice

As I went through months and months of various symptoms, including excessive and abnormal bleeding and pain, I always half jokingly said that I wish I could just have my uterus removed. 

Well today, that became my reality when I had a hysterectomy.

I started my period when I was 11 years old.  When something is always one way, you don’t realize it’s not that way it’s supposed to me.  That’s how I felt about my periods and my own reproductive health. I have always had to wear double protection and still worried about leaks, carrying clothes with me wherever I went.  I didn’t know that wasn’t normal until I was well into my college years. It was my normal.

Fast forward to my early 20s, when I decided to go on consistent birth control. As a public health professional with an entire career focused on reproductive health and counseling about birth control, I knew my options and it was an easy choice.  I wanted a hormonal IUD, not only to act as an over 99% effective form of birth control, but to help control my periods and potentially get my hormones in check as they have affected the rest of my chronic illnesses.  

As well known side effects of IUDs, I didn’t worry when I began having the expected irregular and prolonged bleeding.  That I could deal with, as I had other health priorities. “Periods” (because I would still bleed whenever my body felt like it and for a consistent 10-12 days at a time), became debilitating.  After almost three years, ultrasounds, pelvic exams and blood work, I couldn’t take it anymore. My doctor thought it was just hormones, a “sensitive uterus”, and my chronic illness ridden body causing the issues, which I accepted and had my IUD removed.  

The day I had my IUD removed, I had a Nexplanon implanted in my arm.  I was so hopeful that both the bleeding and pain would subside, especially since this form of birth control was not in my uterus.  I was wrong. The issues seemed to get worse. At first, I justified not going back to the doctor on the normal changes your body goes through on different forms of birth control.  Then, I blamed it on my already defective body.

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Nexplanon Removal

However, this is when sex began to become extraordinarily painful, to the point where I would cry.  I would then begin to bleed, and secretly cry in humiliation. I wasn’t in a relationship and sex didn’t happen that often, so it wasn’t a priority. Until it was.  I went from bleeding whenever for 10-12 days at a time, to constant heavy bleeding for four months. It was time to do something about it. I went through the motions of going back to the doctor, pelvic exams, lab work, and ultrasounds.  The transvaginal ultrasound was miserable, feeling like my insides were being ripped apart. I was in distress and crying from the pain, but all the results came back negative. Once again, the issues were blamed on hormones and my crazy body and I had the implant removed after two years.

I opted to not be on any form of birth control after the implant removal.  I knew something was wrong and birth control was not helping. As soon as my birth control was removed, my bathroom looked like a crime scene or a scene from Gone Girl every few hours with the amount of blood I was losing.  Every time I showered, it looked like the shower scene from the movie Psycho. The pain became so unbearable that even a cocktail of three extra strength Tylenols, Tramadol, and Oxycodone, together wouldn’t bring relief. My irritable bowel syndrome (IBS), was in more of a flare than it had ever been. Being part of the chronic illness community and knowing someone who recently had similar issues, I reached out and found one of the world leaders in pelvic pain/abnormal bleeding, Dr. Karen Tang.

img_0993After spending over an hour in the exam room with Dr. Tang, I came out with signed consent forms for a hysterectomy.  This was not a decision I had taken lightly and made on the fly. It was something that I had been thinking about for awhile, after years of debilitating pain and heavy bleeding.  Due to my other chronic illnesses and medications that I take, I have always known it would be difficult for me to carry a child. In fact, I had done extensive research over a year prior about freezing my eggs for the future.  I also have a family history of gynecological cancers and fibroids, which made a hysterectomy a preventive option. Third, I have gone through most of the clinical options that I am able to take or do (that aren’t contraindicated with my other meds/illnesses) that would help lessen my bleeding, with no avail.  

Furthermore, Dr. Tang after listening to my symptoms and performing an extremely painful pelvic exam, believed I had endometriosis and adenomyosis.  Endo is a painful, potentially debilitating condition that causes the lining of your uterus (endometrium) to grow outside your uterus. The endometrial tissue can grow on your ovaries, fallopian tubes, and pelvic lining as well as the outer wall of your uterus. It can even grow in areas outside of the pelvis, such as the diaphragm, belly button, or lungs.  It affects 1 in 10 women and is typically diagnosed with a laparoscopic surgery.  Endo can be treated through medication or excision surgery.  Adeno occurs when the tissue that normally lines the uterus (endometrial tissue) grows into the muscular wall of the uterus and is typically diagnosed and treated after a hysterectomy.  Knowing how my body flares and how tough it is for me to recover from a surgery, I didn’t want to have to go through a laparoscopy and still have to have additional potential surgeries in the future.  Even though a hysterectomy isn’t a cure for endo, I wanted a one-time shot chance at long term relief. I thought this was my best chance.

The combination of scenarios, symptoms, my medical history and family history, led to the choice of having a hysterectomy to remove my uterus, cervix and tubes, in addition to signing consent to search for and remove endo, and additional necessary procedures.  I kept my ovaries, mainly to avoid the massive hormone fluctuations and early menopause.

img_1267Unfortunately, the wait time for surgery was four month which is not uncommon for a specialist.  Due to my lowered quality of life, I couldn’t wait for that length of time and ended up having the other doctor in the practice, Dr. Sonya Lee, also a world renowned hysterectomy expert, perform the surgery.  Two weeks before surgery, I met with her for about an hour where she also performed an excruciating endometrial biopsy.  I continued to bleed for the remaining two weeks until my surgery. At one point, through the delirium of the pain and bleeding exhaustion I said out loud, “Well uterus, guess who is getting the last laugh?”

I only told a handful of people about this upcoming surgery, and even with those select few I still felt a lack of support.  I wish I wouldn’t get judged for having a hysterectomy before 30. Women have the right to choose what happens to their bodies, with informed consent of course.  Although I had a hysterectomy, and I am still just as much of a woman as I was before, contrary to what I have been explicitly told at both the Thanksgiving table and by multiple friends.  Do all of the experiences in my 28 years of life just negate the fact that I am a women, just because I am missing a few parts? No. Anatomy does not denote identity or experience. I can still have a child through IVF/surrogacy or adoption, that would be no less mine than if it came from my uterus. I should be able to live judgement free because this was something “I didn’t have to do because I didn’t have cancer”.

I did have fears.  This decision was not taken lightly or made on a whim, but had been over a year of being in the back of my mind. I didn’t want to do this aggressive surgery and end up not having relief.  I didn’t want to regret this decision, as although it was the best option, it was still my choice. Although I had made peace with knowing I wouldn’t carry a child years ago, the fact that I 100% could no longer do it, still had me in slight mourning.  I had fears that I wouldn’t have the physical, mental and emotional support I needed after this type of surgery. I did not want to have to make this decision, nor should someone ever have to be put in the situation to make this decision. However, deep down I knew it was the right choice for me.

img_1461Surgery came and went, and my fears became my reality. There was no endometriosis found, even though multiple doctors suggested that was the cause of my problems. Seeing those words, my heart sank and tears welled up in my eyes. There is currently no definitive cause for my pain and bleeding. I spent years being undiagnosed before my POTS and Sjogren’s diagnoses, and here I am taking another blow. Another setback with no answers.

I was devastated and heartbroken. I AM devastated and heartbroken. I felt like this surgery was for nothing. I felt like the agony I am dealing with in recovery was all for nothing. And worse of all, it was my choice. I chose to do this surgery out of all the other options. It was my fault. I blamed myself for the suffering. I blamed myself for not being able to breathe properly or walk for days. I blamed myself for not being able to eat, go to the bathroom or even roll over on my own. For not being able to take care of myself. I blamed myself for the constant severe pain, all over my body and the bruises that appeared. I blamed myself for the bleeding, having to wear foot long pads and mesh undies. I blamed myself for the fevers and about four hours of sleep total in three days. I blamed myself for the hours of sobbing done, partially from the pain and partially from the regret. Could I have waited until March to have the endo specialist perform the surgery? Was there something my surgeon missed? Should I have put myself through the misery of the few alternatives first? I was second guessing and doubting myself and my decision.

I thought I was prepared as I could be. I read up on what it would be like. I had advice from others. I took all the tips and suggestions. However, recovery has been significantly worse than I expected. I didn’t expect the hit from the physical and emotional toll to be this severe.

So here I am, real, honest and vulnerable. Still slightly guilt ridden. I am not okay, which I know sometimes is okay. I am learning to cope as each moment passes by. I am still only less than a week post op and I still have a long way to go. I made the choice that I thought was best for me in the moment. I will have no more monthly bleeding.  Even if the pain doesn’t subside completely, I will no longer have bleeding and the subsequent consequences on my overall health.  That in itself, is a triumph.  I will continue to recover.  I will continue to heal.  I will continue on my journey.

~Natasha

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Survival or Debt: The Plight of the Chronically Ill and Underinsured

shutterstock_1083754901Fighting for your life or crippling debt.  

Millions of Americans face this choice, even with health insurance coverage.  A staggering amount of those people battling chronic illness are facing both.

The uninsured populations are more widely known and discussed, but what about those who are underinsured?  

Being underinsured describes an individual having some form of health insurance that does not offer complete financial protection and lacks the ability to cover out-of-pocket healthcare expenses.  Research shows that 41 million working-age adults in the United States who had health insurance all year were underinsured in 2016, an increase from years prior.  With premiums, deductibles and copays increasing, the majority Americans have difficulty or are worried about paying for medical expenses.

Now, think about those with chronic illnesses, who already have extraordinarily high health care expenses.  People with low incomes in the United States are by far the most at risk of being underinsured.  Among those who receive Medicare under the age of 65 — adults who are in fair or poor health and generally have the lowest incomes, have significantly high rates of underinsurance at about half.    

After having to quit my job due to my complex and progressive medical issues, I had no income for months and was facing homelessness.  However, I was eligible for Medicaid which covered almost 100% of my medical expenses. It was a relief once I was approved for long term disability, as it enabled me to secure stable housing.  However, as long term disability through an employer (although former) is taxed, it is counted as income. Unable to work and receiving “income” within a couple hundred dollars of the eligibility cut off, I was now forced to pay for insurance with my limited and fixed income through the Marketplace, set up by the Affordable Care Act.

This meant, until my SSD/SSI hearing, which wasn’t even scheduled for nine months later, and pending approval, I wasn’t eligible for Medicaid.  This is despite having proof of disability. Despite disability, I now had to pay over $100 for health insurance monthly for a plan with high copays and a high out of pocket maximum.  This leaves me with upwards of $1000 in medical expenses a month, which are mainly copays not including inpatient bills, outpatient bills, tests, and office visits that aren’t fully covered by insurance.  To put things into perspective, my ER copay is $400 and specialist visits (which I have about 15 specialists) are $80 per visit. This coverage plan, which was all I could afford, also doesn’t cover ANY out of state medical care unless it is an emergency.  Other items like supplements, alternative care, acupuncture, and even eye glasses, aren’t considered medically essential and aren’t covered.

Dealing with chronic illness and finding doctors that have an in-depth understanding of your disease is difficult and requires many repeat visits.  Unfortunately, many of those doctors aren’t local. I have had my conditions progress because I couldn’t afford to see the specialists I need to see, out of state.  

Countless hours of advocacy and education have educate myself, and thus my local doctors about the plight of the underinsured.  Many of whom, have NO idea about their fees, insurance coverage of costs of treatment, or care. They have no idea that the injection they are prescribing as the gold standard treatment costs me $700 every two weeks.  Or that the infusions that my insurance won’t fully cover would cost me upwards of $10,000 every week. Or that the medical device for mobility assistance that was recommended will cost me $1,500 out of pocket. Or that just coming into the office for a visit will make me overdraft on my bank account.  I am lucky to have local doctors who are understanding of my health financial situation, after being upfront and honest with them about the realities of both living in poverty with chronic illness.

About a quarter of Americans said that they’ve put off or delayed getting health care skipped a recommended medical test or treatment, or did not fill a prescription, respectively.  I have forgone going to my local doctors on numerous occasions, because I couldn’t afford the excessive copays totaling hundreds of dollars a month. I have sacrificed my own health and put my life in jeopardy in urgent and emergency situations, because I knew I couldn’t afford the copay in addition to non-covered expenses in the emergency room.  

Think about it — half of those who are underinsured, don’t seek the healthcare that they need due to costs.  That means about 21 million people in the United States are sacrificing their health because of costs.  

Many financial assistance programs for prescription drugs from the manufacturer, don’t allow patients with federally funded or sponsored insurance to enroll, including those within insurance through the Affordable Care Act.  I have gone days of skipping medications, to help them last longer because I have been unable to afford refills. I have dealt with making the decision to buy groceries or pay for medication.

Unfortunately, I am not the only one with these life threatening dilemmas.  Research shows that About three in 10 adults report someone in their household has had problems paying medical bills in the past year, often with real consequences. For example, among those reporting problems paying medical bills, 73% report cutting back spending on food, clothing, or basic household items and more than half report using up all their savings to pay bills.

Even with insurance, I am in crippling medical debt.  

What’s worse, is that with the one of the proposed health care reform bills, almost every condition that I suffer from counts as a pre-existing condition.  Meaning, I wouldn’t even be eligible for insurance. Then what?

For many including myself, it is not a matter of survival or debt.  The plight for many with chronic illness is of survival AND debt.

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What Howard University Homecoming 2017 Meant to Me

22555648_10209604706942561_5383201380105356957_oTo put it into once sentence: there is nothing quite like homecoming at Howard.  This annual celebration brings students, friends, family and proud alumni together to the Mecca for a proud celebration that the school president has dubbed the “Black Coachella”.

As a VERY proud alum of the university that holds a special place in my heart, homecoming obviously means the world to me just as much as everyone else, however this year it meant something more.

The last year for me has been more than tough.  My chronic illnesses have retrogressed and progressed, to the point where I had to stop working and give up my beloved public health career.  After being denied treatments and disability benefits, I am now living off of food stamps and medicaid.  I have no income and can no longer afford my apartment, so in a month I will no longer have stable housing until further notice.  With other 30 symptoms daily, I now have complications or symptoms of my chronic illnesses that affect my hair, skin, eyes, mouth, sinuses, respiratory system, heart, nervous system, mouth, bones, GI tract, kidneys, gallbladder, liver, and muscles, just to name a few.  I have Sjogren’s Syndrome (an autoimmune disease), autonomic nervous system dysfunction (POTS), neuropathy which causes numbness, chronic paroxysmal hemicrania which causes severe migraine like headaches, arthritis in my hands, wrists, knees, ankles and feet, daily kidney stones/gravel, renal tubular acidosis, fainting, severe fatigue, and widespread inflammation.  I had to stop my last treatment because I was having severe reactions.  Current treatments are managing my symptoms or the progression of disease.  I am only 27.

Homecoming is bittersweet because marks my sick-anniversary.  It was days after homecoming my freshman year at Howard in 2008, when I got a cold which triggered the first symptoms of dysautonomia.  It was a cold that never went away.  The first time I went to HUH the ER doctor had told me I was probably sick because I was probably wearing no clothes at homecoming trying to look cute *insert eye roll*.  Multiple trips to HUH lead to diagnoses of lung problems and eventually issues with my heart.  Although I wouldn’t get diagnosed with dysautonomia until over two years later, I will NEVER forget when I first got sick.  I will never forget the journey I went through at Howard being sick, despite being sick and the support that I had received.

Since I am not working and have been virtually housebound lately, I spend much of my time in the house alone.  In three weeks leading up to homecoming, I had only left the house three time because my physical symptoms have been so severe.  Once was to go to the grocery store, once was to go to the doctor, and the other was to go to the ER because of kidney stones and gallstones.  I am in the midst of packing and trying to figure out where to live.  Much of my days are spent on pain killers, sleeping, or fighting with insurance companies.  I spend all my time talking about being sick, thinking about being sick, talking to doctors, talking to other sick people and actually being sick.  It’s exhausting and sometimes I just want to do something normal.

I had not planned on going to homecoming this year.  I have been too sick and honestly didn’t think I would physically survive attending the events.  Even so, with no income and not even having to money to have somewhere to live or pay bills, I definitely didn’t think I should be spending what little money I do have on something frivolous like homecoming.

It made me depressed.  Literally depressed.  Like sobbing, crying upset, didn’t want to do anything else depression.  See, homecoming is like a family reunion and this year just so happened to be my 5th year graduation reunion celebration.  Class of 2012 from near and far embarked on Howard’s campus to celebrate homecoming.  Which meant, my friends.  I would be missing spending time with the people that MADE my college experience.  I would be missing seeing my freshman year roommate who I haven’t seen in like three years.  I would be missing seeing the friends that I never get to see because we are spread out all over the country.   Being sick, I get the worst FOMO.  I see pictures on social media of everyone else my age going to parties, festivals, concerts, and even bars.  These are all things that I can’t do because of my current limitations and it makes me truly unhappy.  One night of going out leaves me in severe pain and recovering days or even a week and that’s if I can even make it through the entire night.  I knew homecoming should’ve been off the table.

However, I decided not to be sad.  I knew I needed to do something to make me happy because everything else in my life has gone to shit at the moment.  I can’t control anything else but I could control this.  With the way my symptoms and disease have been progressing, I may not have this chance again.  I may not have the chance to see these friends again.  I may not have the chance to feel this normal again.  So with the help of my fairy grandmother, my friends, a lot of drugs, a lot of make up, a lot of strength, a lot of determination, and A LOT of pretending, I went to homecoming last minute.  Despite feeling SUPER symptomatic the entire time, I didn’t let that ruin my fun or my chance at feeling normal.  I did all the things I wasn’t supposed to do like wear non flats, stand, walk, drink alcohol, not sleep enough, and I didn’t care.  I needed this.  I needed more than anyone knew.

With that being said, I feel like death and am definitely feeling the consequences.  I am writing this post bed bound, in severe pain, on more pain killers than you can image, nauseous, and can barely keep my eyes open.  It was completely worth it.

Howard University Homecoming 2017 wasn’t just a party for me.  It was a reunion, a reconnection, a celebration, an anniversary, my sanctity and my sanity.

~Natasha

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(re)Building Into Brilliance

DSC_0785To quote one of my favorite guilty pleasure TV shows, “Sometimes the future changes quickly and completely.  And we’re left only with the choice of what to do next.  We can choose to be afraid of it, to stand there trembling, not moving, assuming the worst can happen.  Or we can step forward into the unknown and assume it will be brilliant” -Christina Yang (Grey’s Anatomy)

I could easily say that the last six months have been the worst and most challenging time in my life.  I gone through my health conditions rapidly progressing, becoming almost completely homebound, my insurance denying the life saving treatment that I needed, losing my insurance completely, having to switch to Medicaid where I have lost most of my health care providers, having to utilize the disability services for my MBA program, having to take medical leave from my job, not knowing if or how I will be able to stay in my apartment, and losing a $60,000 career to needing emergency food stamps.  I felt like a failure.  I felt like I had lost everything I worked so hard for: my career, my apartment, my academic career, friends, relationships, maintaining a hidden health status, and most of all my pride as I had to start a crowdfunding site to assist in funding my medical expenses and rent.

I am a control freak, and this was not part of the plan for my life.  However, recently I have reflected on the last six months and realized without any of these obstacles I wouldn’t have been able to come to many realizations about finding oneself and self-love.

It started when I redefined my bucket list and wanted to share with the world why I value the list so much.  I have been a writer for as long as I can remember and have published my own book.  One of the reasons I created the list was to live for experiences,to cherish the memories of those experiences because those memories will last a lifetime and since then I have done just that.  I got the article about my bucket list published and that was the turning point.  Since then I have dabbled in creating my own app, which is still a work in progress since technology and not my strong suit and I am teaching myself coding.  I have started a business called TashaG Photography which I LOVE, selling my original photography prints and canvases.  I have always loved taking pictures, as I used to take hundreds to thousands of photos on trips.  Now, I have invested in a professional camera, am selling my photos online/at festivals and use photography as my coping mechanism.  I have modeled in a nude photoshoot in order to celebrate my body and showing self love instead of my typical reference to body as “sick”.  I did the shoot in order to forget all that sickness has done to my body both physically and emotionally, and just be beautiful.  I am know I am beautiful despite all that my body has gone through.  This is where I have developed my #sorrynotsorry attitude where I realized I am no longer apologizing for being me.  I am me, unapologetically.  I have become friends with interior designers, plus size models, photographers, bloggers, and health advocates from around the world.  I would have never pursued any of these things if it wasn’t for me “losing everything”.  Not only have I accomplished all of these, but I have balanced my debilitating symptoms, countless doctor appointments, relentless phone calls to my insurance company, applying/reapplying for state and federal assistance, on top of being an adult.  I had to lose everything in order to rebuild brilliantly.

When you’re so focused on a plan, whether it be your career or personal/family/societal expectations you tend to lose yourself.  You tend to ignore other potential interests or even passions that you have pursued in the past.  But why? Life is too short not to be happy and not to try something new.  Sometimes that may involve reevaluating and redefining success on your own terms.  Take a leap of faith.  Trust the magic of new beginnings because you never know where they will lead you.

I don’t know what the future holds.  I don’t know if my business will succeed.  I don’t know if my health will continue to get worse.  I don’t know if I’ll ever be able to return to work again.  I don’t know if I’ll complete more items on my bucket list.  What I do know is that the future, although unknown, can be brilliant.

~Natasha

P.S. I have linked most of my accomplishments in the last six months within this post, so check them out.

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How I Went From a $60,000 Career to Needing Emergency Food Stamps

FullSizeRenderMy career is in public health, where I spend my time advocating for people in order for a reduction in health disparities.  The clients we serve are typically low income, with insurance difficulties, health problems or risks, and competing needs in obtaining the necessary resources to survive.  I have worked to get people access to quality health care and the lifesaving treatment that they deserve.  Now, I find myself going from a $60,000 career that I LOVE in managing a public health program to needing emergency food stamps in a matter of months because of a broken system and chronic illness.

I suffer from Sjögren’s Syndrome, an autoimmune disease that attacks and damages my moisture producing glands and other organ systems in my body.  Along with complications and damage to my eyes, mouth, joints, lungs, and GI tract, I also suffer from nervous system damage.  Specifically, I suffer from small fiber neuropathy that causes pain and numbness in my legs and dysautonomia.  Dysautonomia is a term for medical conditions that cause a dysfunction of the autonomic nervous system, which controls the “automatic” functions of the body that we don’t think about. These include heart rate, blood pressure, breathing, and temperature control.  In total, I have about 30+ debilitating symptoms daily with no treatments that have been effective in disease management.

In January 2017, I proceeded with my biannual Rituximab infusions to help treat my Sjögren’s Syndrome.  Since I tend have medication sensitivities and known reactions to this medication, the protocol was changed for this round.  I had done one infusion a week for four weeks with premedications (Benadryl, nausea, steroids, inhaler, beta blockers, Tylenol, Zantac, saline) to help mitigate a reaction.  However, I still had a reaction to each infusion and had to absorb more medications into my body.  This took its toll and I made the emotionally and psychologically devastating decision to take medical leave from my job.  This is something that in the eight plus years I have been sick, I have never done.  I had always pushed through my symptoms to try and live a normal life as possible, but I had finally reached my threshold.

Once the infusions were completed, instead of feeling better I seemed to feel significantly worse.  I went back to work for a little while and tried to push through, but I couldn’t take crying each morning knowing how badly I felt and crying myself to sleep each night because I legitimately felt like I was going to die from my symptoms.  So, for the last five months I have been on an intermittent medical leave from my job.  It got to the point where I ran out of paid time off, and because I had intermittently gone back to work I didn’t qualify for short term disability payments through my job nor was I eligible for social security disability through the government.  I no longer had an income.

In the meantime, I had and still am working with my doctors to come up with a treatment plan, but it was seemingly impossible.  It was the doctor’s impression that my body was no longer responding to the Rituximab and that it appeared that the complications had outweighed the benefits.  The next treatment option would be Intravenous Immunoglobulin Therapy (IVIg).  IVIg is traditionally used to treat people with immune system disorders and evidence has shown both clinically and anecdotally that this treatment helps with nervous system damage.  This treatment is my one shot at getting my life back, because I have exhausted my treatment options.  Two physician recommendations, multiple insurance appeals, peer to peer physician reviews, multiple research articles as supportive evidence, physical symptoms that have left me homebound and out of work for months, and the potential of risking my life every time I leave my bed, is not enough for Aetna to approve this treatment.

So here I am now.  I currently am still on unpaid medical leave.  My doctor will not clear me to go back to work and I agree that my body cannot handle a full-time job at the moment.  I am still fighting with my insurance company for this life saving treatment, with a hearing at the end of May.  I need this treatment in order to get back to work and get my life back.  However, if I don’t get cleared to go back to work by June 2nd, I will essentially lose my job and my insurance.  Why even fight with an insurance company when I might not be receiving services in a few weeks?  It is a lose-lose situation.

I have no income.  My checking and savings accounts have almost been depleted.  I have had to reapply for SSD, and even if approved I wouldn’t be receiving payments until the end of the year.  I applied for SSI but may not receive payments for months, if approved.  I have been proactive in applying for Medicaid, but my application is still under review because I still currently have employment based insurance (long story).  I have so little money and resources that I qualified for the maximum amount of emergency food stamps for a family of one, while my application is being reviewed for long term benefits.  Every day I worry about how my bills and how my rent will be paid.

Not only am I dealing with debilitating physical symptoms but the system is so broken that the stress is also wreaking havoc on my immune system.  How did I go from a $60,000 a year career to needing emergency food stamps in a matter of months?  This process has been emotionally and psychologically damaging.  Seeing the ACCESS Card with my name on it being swiped at the grocery store as only resource for food; that same card my clients used to access their services.  It is a reminder that we are all a very short way away from being in the same situation.

So here I am.  Without treatment, I will continue to be unable to work.  I am in the process of losing a job that I LOVE and a career that I have worked hard for, losing my insurance, losing my apartment, losing my stability, and completely losing my independence even before my twenty seventh birthday.  I will continue to fight and am doing everything in my power to do all the things that I can control.  However, it is not up to me.  I am at the mercy of my job, my insurance company, my doctors, and the government.  One thing is for sure, my story is not over yet.

~Natasha

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Aetna Would Rather Have Me Risk My Life Than Approve My Treatment

shutterstock_430725808One of my biggest fears is fainting and falling onto the train platform of the city’s public transportation system while running errands or on the way to work.  Lately, this fear is becoming closer and closer to reality as symptoms of my chronic health conditions have gotten worse and my insurance carrier, Aetna, is partly to blame.

I suffer from Sjögren’s Syndrome, an autoimmune disease that attacks and damages my moisture producing glands and other organ systems in my body.  Along with complications and damage to my eyes, mouth, joints, lungs, and GI tract, I also suffer from nervous system damage.  Specifically, I suffer from small fiber neuropathy that causes pain and numbness in my legs and dysautonomia.  Dysautonomia is a term for medical conditions that cause a dysfunction of the autonomic nervous system, which controls the “automatic” functions of the body that we don’t think about. These include heart rate, blood pressure, breathing, and temperature control.

Extreme fatigue, sinus congestion, salivary gland pain, jaw pain, dry eyes, dry mouth, ocular migraines, severe joint pain, tingling and numbness in legs and feet, bursitis, involuntary leg movements, nausea, vomiting, acid reflux, fevers up to 101 degrees spiking multiple times a day, night sweats, dizziness, lightheadedness, rapid heart rate, shortness of breath, graying out and fainting.  In the last few months, I have suffered from approximately 30 symptoms daily.

Unfortunately, there is not a “one size fits all” treatment for my chronic conditions.  I see more than ten specialists that work together to create treatment plans that work, however recently those treatment plans have been unsuccessful.  I was receiving risky Rituximab infusions, to help kill the cells in my body that cause inflammation however, my body reacted poorly to each infusion even after receiving a wealth of pre-medications to mitigate a reaction.  Furthermore, after approximately a year of treatment, it seemed that the complications outweighed the benefits.

This is when my rheumatologist decided that another treatment called Intravenous Immunoglobulin Therapy (IVIg), may be the next best course of treatment. IVIg is traditionally used to treat people with immune system disorders and evidence has shown both clinically and anecdotally that this treatment helps with nervous system damage.  This treatment is my one shot at getting my life back, because I have exhausted my treatment options.  Originally this treatment was recommended and prescribed by my neurologist in 2015, however after multiple attempts and a peer to peer physician review Aetna decided to deny this treatment on the basis that they consider it experimental for someone with my conditions.  Now, a second doctor is suggesting this treatment.  We have multiple 10-page research articles as evidence of effectiveness, my extensive medical history of multiple symptoms and surgeries, and the records of hundreds of failed medications and treatments to prove to my insurance carrier why they are in the wrong.  After a peer to peer review and two appeals, the decision holds that Aetna will not approve my IVIg treatment.

Two physician recommendations, multiple research articles as supportive evidence, physical symptoms that have left me homebound and out of work for three months, and the potential of risking my life every time I leave my bed, is not enough for Aetna to approve this treatment.  They approved the Rituximab infusions, which happen to be more toxic than the IVIg.  Without treatment, I will continue to be unable to work, will lose my job and a career that I have worked hard for, lose my apartment, and completely lose my independence at the age of twenty-six.  I am close to having two master’s degrees, have traveled around the world, am a published author, and own a business, but currently am currently function at a quality of life that so poor that it is almost unbearable.  It is ridiculous that someone can be at the point where they are losing the will to live and are at the mercy of an insurance company who won’t approve the treatment that is a chance at survival.

Is this fair?  How bad does my condition must become for a necessary treatment to be approved?  Do I have to continue to let the stress of not being able to get a necessary treatment, wreak havoc on my immune system?  Do I have to be dead?  Or is Aetna waiting for me to faint on the train tracks to realize that it would be cheaper for me to receive this treatment than the temporary “Band-Aid” of individual symptom treatment and emergency room visits?  Is Aetna waiting for me to get a complication that will kill me so they no longer have the “burden” of paying for me?

Insurance companies are a business and money is at the pinnacle of that business.  In my public health profession, I spend my career advocating for people to reduce health disparities but here I find myself working in a professional where the system is broken and people cannot receive lifesaving treatment.  I refuse to let my insurance company dictate my life, and will continue to fight to get the treatment that I deserve.

~Natasha

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The Coldest Winter…

fullsizerenderUsually in the winter, the symptoms stemming from my Sjogrens, POTS and other conditions tend to flare up. I was prepared for a flare but I didn’t expect the nightmare that subsequently happened. I went on a brief trip to LA to escape the cold, but when I returned my quality of life seemed to go downhill.  It was more than a flare. Enough that I could no longer suck it up and continue to push through with life. Enough that I could no longer keep my pain and discomfort hidden. I pushed through the holidays, however had to take off from work for much of the remainder of December.

The flare could also be blamed on the fact that my Rituxan infusions were wearing off and I was due for my next round. Since I tend to have unusual reactions to the infusions, my doctors and I strategically made a plan to lessen the effects. I would do the infusions weekly for four weeks instead of two and I would increase the number of preventive premeds given. I was desperate for this round of infusions.

When infusion day came, I was ready. After Benadryl, steroids, an inhaler, liters of saline, Pepcid, tylenol, and zofran, the Rituxan was ready to be infused. The emergency meds were already ordered and placed on the table next to me, anticipating a reaction. Hours later, I thought I was in the clear with no reaction in sight. That was, until a wave of nausea hit. As I went to the restroom, I began vomiting. Within seconds, my throat was itching, I was sweating, had a high heart rate, fever and was extremely nauseous. After informing the nurse, the reaction protocol began and emergency meds were given. A half hour or so later, I was feeling better and the infusion continued. I went home after spending about 8 hours in the infusion center.

When I went home, things didn’t get better. Sparing the details, my symptoms were severe and I was virtually bed bound. Bad enough that I wanted to no longer continue with treatment. Stopping treatment could mean progression of my autoimmune disease but the symptoms I’ve been feeling don’t seem to make treatment worth it. To me, the benefits no longer are outweighing the negatives. If I stop this treatment, there would be limited options left for treatment but that was a risk I was willing to take. Although my actual health conditions aren’t life threatening, my quality of life is being limited and I never know what complications could arise. I wasn’t giving up but I know I have had enough.

After voicing my concerns with my very kind and empathetic doctor (who is amazing for putting up with me), I decided to at least finish with this cycle of Rituxan. In order for me to do this, I reluctantly will have to take a short medical leave from work in order to really focus on recovery. These decisions have been some of the toughest decisions I have ever made. I never thought that at 26, that my life would be this complex. I truly appreciate all those who have been supporting me through this because I have no idea what I would do without these people.

Just have to keep pushing.

~Natasha
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