I have lots of ideas and thoughts I want to record here and find writing therapeutic. I planned on writing tonight, just like I have planned to write many nights, but again and again the thoughts don’t end up here. I’m tired. I stay tired. Maybe words will find themselves here tomorrow.
January is Thyroid Disease Awareness Month. In recognition of this, I thought that a post about my struggles with Hashitmoto’s Thyroiditis was timely.
Before I go into my thoughts, I want to state very clearly that this is my story. I know lots of people who have thyroid issues and they feel like their lives and health are fully normal when taking their daily dose of Synthroid. Everyone with thyroid problems reacts to them differently, experiences different symptoms, and reacts to treatment differently. This is my story, not anyone else’s.
My initial diagnosis from my family doctor, in 2012, was Hypothyroidism. After several months of constantly adjusted treatment, my TSH levels were never in the “normal range,” so my doctor referred me to a Endocrinologist. This specialist tested my antibodies and did a thyroid ultrasound and diagnosed me with Hashimoto’s Thyroiditis. I only saw this specialist a few times before I quit seeing him, in favor of another Endocrinologist. Frankly, he was an ass and had a terrible bedside manner. He refused to talk to me, telling me he would “send me a letter” and when I inquired about dealing with the weight gain caused by my condition, he told me to “eat more salad” over his shoulder as he walked out the door. My second Endocrinologist was very nice, but he turned me off by refusing to do blood work 50% of the way through my pregnancy because he said “if your levels havent changed yet, they aren’t going to.” Following this statement, my OB ordered my bloodwork and medication until after my baby was born. Following my daughter’s birth, I started seeing a new Primary Care doctor. I am currently on a waiting list to see a Internist, because I am tired of my symptoms being ignored just because my TSH is in the “normal range.”
I was diagnosed 3 1/2 years ago with Hashimoto’s and the only improvements I have seen are a lessening of complete exhaustion (at one point I was sleeping up to 20 hours a day), lessening of weight gain, ability to lose weight with medical intervention (phentermine), and an improvement in my ammunition system (which I credit to removing gluten from my diet).
I am on my 5th doctor and on a 7 month waiting list for doctor #6. So far all the doctors generally ignore my symptoms.
The only meds I have been able to get prescribed are levothyroxine. While my TSH and T4 are checked regularly, other tests are rarely done or have only been done once. Generally my inquiry for more tests is met with the doctor ignoring me or making me feel dumb. I’ve had my antibodies checked once, my vitamin D checked once, and my free T3 and free T4 checked once or twice. I’ve also been tested for anemia. That’s it.
My symptoms include: fatigue, difficulty swallowing/”thick saliva”, dry skin, itchiness, difficulty sleeping at night, occasional restless leg syndrome, waking up tired after a full night’s sleep, easily bruised , brain fog, forgetfulness, halitosis, receding and bleeding gums, seborrhetc dermatitis (I think – this is a self diagnosis, but again the doctors have been ignoring me), hair loss, nail ridges, keratosis pilaris, anxiety, gritting teeth/clenching jaw, periodic hot flashes (primarily at night), difficulty regulating temperature /cold intolerance, varicose veins, IBS, difficulty losing weight, sensitivity to gluten, muscle and joint pain, and tingling/numbness in legs and feet, pain in soles of feet.
We can all agree that when the thermostat is set to 75 degrees I shouldn’t need to sleep with three blankets, an electric shawl around my shoulders, and a heating pad between my feet – all while fully dressed, right?
I am very happy to say that to date I have lost 30lbs (based on pre-pregnancy weight) and that I am 10 to 15 pounds from my pre-diagnosis weight, but 100% of this weightloss had been attributed to the phentermine. I am scared to death of what will happen to my body after I go off this medication. I am scared that the weight will pile back on and I am scared that I will start reverting back to my super fatigue state. Right now, I strongly believe that the phentermine is keeping my energy levels fairly normal. I know most people experience rapid heart rate and a hyper state on phentermine, but on days I dont take it, I feel like a zombie. Even on days I take it, I fight brain fog, but on days I dont take it, I really have trouble functioning. I guess I think that it is masking my super fatigue symptoms.
Again, I know lots of people suffer from thyroid issues. Thyroid problems are one of the most common illnesses in women. However, I am only 32 years old and I most days I feel like I am living detached from my body and that my body cant be mine because a 32 year old shouldnt feel like I do. Everyday I think: how bad will my feet hurt today?, Will I be able to focus as I drive to work today or while on the phone during my conference call?, Should I take my electric shawl to work today to use in conjunction with my space heater?, Will my staff think I dont shower because my scalp is flaking so badly?, Oh, how long have I been scratching that spot on my arm – there are scabs there now?. Are these normal thoughts for a 32 year old?
Why should I be willing to wait 7 months to see a doctor (#6)? Why are my symptoms ignored? Why wont someone run a vitamin deficiency panel or consider putting me on a treatment other than Synthroid?
Could I live my life and put on a happy face, letting the world think I am happy and healthy? I could, but I am honest with myself and honest with those who live their lives around me. I am not the person I think I should be – I think I could be happier and healthier, but I need someone to listen to me. I want a doctor to care. If my symptoms are untreatable and I just have to live with them, then fine – but damn it, at least someone should care enough to find out if something is causing my symptoms and if that something is treatable!
My name is Ashley Graves and I have Hashimoto’s. I am 32 years old, a wife, a mother, a professional, and an educated woman. I will learn everything I can about my illness and I will advocate for the best healthcare available to me. I will live my life to the fullest I am able and I will not let other people tell me how I “should” feel.
In order to be the best mother I can be, I need to show my daughter that I am important, that she is important, that our health is important. I want to be in my best possible health, so I can be there for her and I want to ensure that she grows up knowing that advocating for yourself is important.
My illness maybe lifelong, but my symptoms dont have to be. I am dedicated to being my own best advocate.
I am not sure how long I have done this, but every year I buy multiple rolls of coordinating wrapping paper for the purpose of wrapping the gifts I have purchased in a very distinct way. Im not a fancy wrapper – I rarely even attempt to even add bows. Every year the gifts wrapped and placed under my tree are according to that year’s distribution chart.
Let me explain. Some people wrap gifts indiscriminately, not caring which gift is wrapped in which paper. Some people purchase multiple wrapping papers with the goal of using a different pattern for each child or family member. The gifts under my tree are wrapped in patterns according to the household they will be delivered too.
Thats right, I color code the gifts under my tree based on their final destination. See, my parents are divorced and my dad’s parent’s host their own holiday celebration, and since meeting my husband, we also celebrate a separate event with his family. You read correctly – my family celebrates 4 Christmases – and they are spread all over the map (ok, Just Arkansas and Texas).
When I am making quick jaunts for a holiday, its too much work to sort through gifts for everyone and its so embarrassing to show up missing a gift! Loading the car is so much easier when all I have to do is grab the “dot” paper or the “santa” paper!
Genevieve is 16 months now and while she still babbles most of the time, she is learning so many new words! Many words she says once and never repeats again, but there are many more that are becoming a regular part of her vocabulary!
- Eat (her most frequently used word currently)
- Doggie/Puppy (She has always said doggie, but I think her new daycare must use “puppy” because she has started saying that now)
- Poppy (which for some reason she also calls “Bobby”)
- Hot (she says this alot, but doesn’t really know what it means – she says all food is hot)
- Night Night (her newest word)
She can also follow directions to: “put it back,” “bring it here,” “give love,” “hug,” “kiss,” “dance,” and “hold mamma’s/Daddy’s hand.”
She had learned to kiss, hug, wave, blow kisses, sit in our laps for stories to be read, walk, run, dance, dance on a daddy’s feet, “ride the horse” (bounce on an adult’s stomach, push her arms and legs into sleeves and pants, put her foot in a shoe, and how magnets work.
It’s amazing how much life changes without us even noticing. When I look back on photographs from just a couple of years ago, the memories, the experiences, and even the faces (mine included) seem like they were taken lifetimes ago. Life is passing faster than I can blink and it’s so bittersweet.
This picture shows a moment each year since 2009 – 6 years in the making. For the most part, each of these were taken about the same time of year.
2009 – just started dating Michael. We were on our first road trip. We went to Texarkana.
2010 – date night for our 1st anniversary
2011 – Michael proposed on Thanksgiving
2012 – We got married!
2013 – We’re pregnant!
2014 – Our first Thanksgiving with Genevieve
2015 – Genevieve is walking and starting to talk
So this is old news by now, but still worth sharing, because this shirt is awesome!
I love my husband dearly but he is a self proclaimed un-romantic and isn’t normally one to surprise me with unexpected gifts.
I was super excited and very touched my his very thoughtful gift! He got me 2 t-shirts and a sweatshirt! What a perfect gift!
If you read my labor and delivery story, you will know that we didnt have a quick or easy time bringing Genevieve into this world. You will also be aware that our experience at Baptist Hospital left much to be desired. In fact, I have sworn that I will never deliver a baby there again. Actually, I never want to set foot in that hospital again because I just dont trust them and their customer service has been abysmal.
If you havent read my labor and delivery story, this post will fill you in on much of the details – so read on at your own risk.
Genevieve was born 13 months and 3 weeks ago and I spent the first 9 months arguing over the bill that I was sent because we were kept in the hospital for an additional day for treatment that was never given. The hospital contests that we were kept for other reasons and that the treatment Genevieve was never given, was not given because it was never ordered. I contest that I only know what the doctor and nurse told us (I cant help that the paperwork wasnt done properly) and I was never told of these other reasons during our stay.
My complaints didnt even get to fall on deaf ears, because I was never allowed to speak to the department who was handling my complaint. I spent 9 months calling the billing department who promised to follow up with the auditing department and then call me back (but never did). I was always told that I wasnt allowed to speak to the auditing department myself. Eventually I got tired of calling and being told that there had not been a response from the auditing department yet, so I quit calling. Sometime after I quit calling I finally told that my claim was rejected and so I complained again. This time I never got a response. The next think I know, I am being contacted by a lawyer for lack of payment on my bill. Of course I never paid the bill, I thought it was under review. Thanks for calling me to tell me my account status had changed. Thanks for never sending me another bill, but instead contacting a lawyer about my unpaid account.
What did I do? I wrote the lawyer a letter. A 4 page letter. Today I got a call from a different department at Baptist Hospital saying that my accounts were now on hold and that they were conducting an investigation. Really? It took me writing a 4 page letter to the attorney for you to listen to my complaint? After my experience, I am not optimistic that my complaints will be taken seriously, but at least there is progress finally happening – 13 months and 3 weeks later.
Today I received a phone call from a hospital department I have never spoken with before. They handle customer complaints and I was contacted because of my letter. The hospital is opening an investigation into my account charges. I dont really expect the resolution I want, but at least someone is finally listening. Stay tuned for a future post on the outcome.
Note: My labor and delivery experience is mine and mine alone. I do not work for a hospital or medical provider and I am not a medial professional. I fully understand that some parts of my negative experience may be the result common hospital practices and normal labor and delivery circumstances. However, our negative experiences were so broad and far reaching (extending way past delivery and into records and accounting), that I feel full justified in my complaints and dissatisfaction.
Below is the letter I sent the hospital’s attorney in response to their collection’s notice:
Dear Mr. Edwards,
I was very grieved to receive your letter last week. I must say that receiving a request from a lawyer about our hospital bill is one of many marks against the Baptist Health Medical Center, its customer service, and its billing practices. As a citizen in good standing, I am more than happy to pay the amount we owe to the hospital, although I wish that their offices had been willing to speak with me during my many calls to their offices, that they would have addressed my concerns, or that they would have contacted me regarding this matter.
While I know it is only your role to collect monies owed to the Medical Center, I feel like I must in good conscience state my case and the related circumstances, especially since I feel like my experiences and interactions with the Medical Center in the last 13 months are of importance to your understanding of the situation. Please bear with me as this will take a considerable length to relate.
I arrived at Baptist Medical Center on August 5th, my due date, because my water had broken. When I arrived I was weighed and sent to triage to wait for a nurse to admit me to the maternity ward. I understand that they hospital’s policy is that labor must be verified before admission because of the possibility of false labor. During this time my water continued to leak heavily. When take to the triage area, I was given a gown and told to wait in one of the triage rooms. My husband and I waited over an hour before anyone came back into the triage area or checked on us or my baby. After someone finally came to check on us and check me for labor I was immediately admitted (the did a litmus test even though I was sitting in a puddle and liquid was dripping off the edge of the bed).
Late that evening I requested an epidural because the nurse wanted me to rest and I wanted to make sure that I had the procedure before the pain made it difficult to sit still. I had several nurses during my labor, primarily it seemed that they were all assigned to me as their shifts were ending or transitioning. The only nurse that was with me any extended time was the nurse who ended up being there at my daughter’s delivery. She was accompanied, at least part of the time by a student nurse. I brought with me a birth plan that outlined how we wanted our birth experience and this was given to each nurse and put in my file. The plan was fairly simple: discuss and inform me of everything, my husband will stay at the head of the bed, and no episiotomy. My labor lasted 20 hours and I progressed into active labor for the last 4 hours of my labor. During my inactive labor my epidural ran out once and when I told the nurse she refilled the medicine. During my active labor my epidural ran out and a nurse (although not my nurse) told me “what you are feeling is normal” and wouldnt check the medication. At this point I was in so much pain I didnt even noticed when she left and my nurse returned to say something again.
Because my labor was progressing slowly, I was re-positioned several times during my active labor stage. However, because of my epidural, I could not put myself in or hold myself in any position other than laying on my back. Because of this, my husband was directed to put me in the positions and hold me there. He is also the one who ended up holding my legs when I was pushing on my back. During my active labor I was very nauseous, but after I received my 2nd dose of nausea medication, I was not allowed anymore. The result of this is that I started vomiting and continued to do so through the remainder of my labor. Between the vomiting and the dehydration, from no water for 20 hours, I was very thirsty. My mouth and throat were so dry that I had trouble speaking and breathing through my mouth. During this time period my husband was holding me in one position with one arm and my legs in another while trying to feed me ice chips and be there for me as a husband to comfort and encourage me. I was required to hold my vomit bag, “hold my breath and push,” and feed myself ice chips (because my husband doesnt have 3 hands) while having labor induced shakes so bad I almost felt like I was having seizures. Let me tell you, I felt so disconnected from my birth experience and my husband felt so disconnected from me. I felt like I was all alone and that no one was helping us.
When my daughter was finally born on the afternoon of August 6th I was so exhausted and shaking so bad, that I was scared to hold her. My epidural was so faded that I felt my stitches (although I was never told what tore or how many stitches I was given). If fact, while I was unsteady, my epidural was so faded that I could easily stand when the nurse came to move me to my new room.
Unfortunately my labor experience was only the smallest part of my bad experience. Each meal that was brought to us was cold and although I requested a special diet (gluten free), none of the food was ever marked and didnt look safe to eat, so my husband had to purchase us both separate meals from the cafeteria. I was so damaged from the birth that I was left with a catheter for 2 days and was told when it was removed that I would probably get a bladder infection due of the length of time I had been cathed. When it came time to discharge me the nurse asked me to try to urinate. After help to the bathroom and several minutes of screaming and crying I was able to compete the task and I informed her that only one drop came out and she said that was fine, she didnt need to test or measure it – that anything at all was good enough. She then proceeded to tell me that after I was discharged I would cease receiving nursing support or care, but that we would be allowed to stay in our “daughter’s room” because she was not being discharged. She brought us our discharge papers and my prescription for pain medication at 6pm. When my husband asked where he could get the medication in the hospital we were told that the pharmacy closed at 6pm and that to get it filled he would have to leave the hospital. When we complained about this, we were told that she brought the paperwork when it was given to her by the doctor, but I know the doctor wasnt there that late. As a result, of the late discharge, I was forced to go without pain medication until my daughter was discharged the next day. My husband was afraid to leave me at the hospital to get my medication because he didnt want to leave me and our daughter alone without support or aid (the nurse told her she would not longer help me or care for my needs). He was afraid to leave because my pain was so great and my mobility so limited that I could not get in and out of bed alone or move much at all without assistance (and a tremendous amount of pain).
Our daughter was not discharged with me because she had jaundice and we were told that she needed bilirubin treatment overnight. The next day the nurse (different that the discharge nurse) came into our room asking why we were still at the hospital because she thought we had been discharged the previous day. We told her that our daughter was held for treatment during the night. She was confused, so she took our daughter to the nursery to do a morning check and to follow up with the doctor. The doctor on call came in and told us that there was no record that a bilirubin test was ever ordered ( even though the doctor and nurse had told us she would get the treatment), or that any paperwork had ever been filed for the test, and that our daughter never received any treatment. The doctor on call at that time said she was starting the discharge process and that we should follow up with our pediatrician about the jaundice instead. Therefore, we were kept in the hospital an entire extra day, during which time my daughter’s health was disregarded and I didnt have access to my medication. We were kept from the comfort of our home, the care of a doctor who actually cared about our daughter’s health, and billed, all because the doctor on call the night before didnt do his job correctly or with care. Our last day in the hospital served no purpose.
It was one thing to receive sub-par care myself, but for my daughter’s health needs to be ignored – in a maternity ward at that?! I should never have to question my daughter’s health and safety in a hospital. I should never have to question the actions of my daughter’s health care professionals when they are out of my eyesight. Should I have to request to view our medical charts after each conversation with a health care provider, to ensure that what I am told is true and the tests are actually ordered? How would you feel, if your child’s health had been compromised?
We followed up with our pediatrician about the jaundice and because her jaundice was starting to recede on its own, he simply recommended putting her in the sun a few hours a day.
A week later, after not being able to urinate, I went to the urgent care clinic. I had a major bladder infection. The doctor there wondered why I hadn’t sought treatment earlier, but I didnt know what I was feeling was inconsistent with the way it should have been after giving birth, and the nurse who discharged me acted like I was fine. He and I both wondered why I hadnt been test before leaving the hospital or at least been given better instructions and information.
This horrible saga continued when 2 months later I arrived at the vital records office to pick up my daughter’s birth certificate only to be told that they had no record of her birth. I was told at the hospital that it would be a maximum of 6 weeks for the document to be ready. The Vital Records office gave me the number to call at the Medical Center for birth records and I had to leave several messages and call several office at the hospital because no one knew where the staff member that handled birth certificates was located. A few hours later, I was finally able to talk with the correct person, only to be treated rudely and be told that they paperwork was done weeks ago. She didnt believe me that the records weren’t at Vital Records even though I told her I was there at the office as we were talking and I had to specifically request she resend them because she didnt even offer. This was a huge chore (and several hours out of my day) with a newborn baby, especially since I had to drive an hour to get there in the first place! Shouldn’t I be able to trust the hospital to maintain and submit proper records? You know how ridiculous it felt to have to say, “I know my daughter was born – I gave birth to her and she is right here in my arms?”
When the bill finally came, I thought it was high so I requested my records and saw that they werent charging us for the bilirubin tests, but they were still charging us for Saturday (I also saw they misrecorded my weight by 50lbs). I called to request the bill be adjusted and gave my reason. I was told that a claim would be filed and that they would follow up with me. The following 9 months consisted of me calling every week to no status update, several calls with managers, no one ever returning my calls, and then being told that approval had to come from the Auditing department. I was told over and over again that I was not allowed to speak to the auditing department, only the billing department, so my complaints and any eventual response was always handled by a middle party. Eventually I was told that the claim was invalid because there was a blood test on Saturday. I asked that the complaint be resubmitted because I was never told of a blood test and there was no reason to do a blood test if they never even gave her the treatment.
I have not received a bill from the Medical Center for months. In fact, I believe the last bill I received was well before I was even told my first claim was denied (9 or 10 months after my delivery). I have not received a bill or any communication from any department of the Medical Center since I asked my claim to be refiled. I have made one payment on the account, but based on the information in your letter, the payment was mishandled. I payed my account in full and when I made the payment I specifically stated that the payment was for my account and not my daughter’s because I was contesting part of the charges. The staff member suggested I pay the bill in its entirety, claiming that we would be reimbursed when the claim was finalized. However, after experiencing all the issues we have had, I did not have faith at that time, or even now, that I would be reimbursed money owed to me.
- My husband did more work than any of the nurses or doctors
- We were never given any information about what was going on and why
- With the exception of the initial epidural and the fact I was in the hospital building, I might as well have given birth at home due to the lack of support and the scope of my husband’s involvement
- I do not feel like I received timely, appropriate, complete, or courteous medical care.
- My medical records are incorrect
- My daughter was not given the care promised
- My daughter’s birth records were mishandled
- The billing and auditing offices were unhelpful, uncommunicative, and unresponsive
- Our previous payment was handled incorrectly
- Our labor, delivery, and birth experience was so bad, that I am honestly afraid to have another child
Again, I know it is only your job to collect funds owed to the Medical Center, but I really feel like to understand my point of view and the circumstances leading up to your acquisition of my account, you really needed to be aware of the situation in its entirety.
I am greatly saddened by my whole experience with Baptist Medical Center. Even though my husband and I feel like our experience was abysmal (in fact even our family commented on the poor care when visiting us at the hospital), I never intended not to pay the bill. I just wanted a fair adjustment to the charges. In fact, on several of the occasions when I called the billing department, the staff were sympathetic and appalled that our daughter never received her treatment. I think it was a terrible disservice to me, and I assume many other patients, to not be allowed to discuss my complaint with the actual persons making a decision on the claim.
I would very much like a response from your office regarding the receipt of this letter and I will follow it with the required payment, in full, should it be necessary. Please let me know if I should forward the payment to your office to to the Baptist Health Medical Center Billing Department.
Aggrieved Baptist Medical Center Patient
I resolve that in 2015 I will catch up on my past promised blogs and write on a much more regular basis. I have so many things I want to say and it will be my goal to get my thoughts “on paper” to my blog at least twice a month.
|In labor and just arriving at the hospital|
Overall our birth experience was not what I expected, although I will admit, that I didnt really know what to expect. We came prepared with a birth plan, but even though we attended all the birth related classes the hospital offered, we werent really prepared. I think that my birth experience was colored by the shock of going into labor, since we didnt expect to go into labor on her due date. Although we had many unexpected experiences, we were so glad that we were able to finally meet our little girl. Our hearts are so full of love and joy at her arrival.
|One day old|