2018

Update: 12/12/2018

We met with my primary care physician yesterday. That was a HUGE waste of time.

I had originally requested to see a urologist via the MyChart messaging feature when it was determined that I more than likely had my fourth UTI of the year.

As mentioned below I was having issues with emptying my bladder among other issues and had taken at home UTI urinalysis and it had shown that I had a UTI.

But then we did a urinalysis and culture and sent them off to the lab for processing and the urinalysis came back with a lot of bacteria but the culture came back clean so they decided I didn’t have an UTI. Regardless of whether or not I have a UTI or not, I am still struggling with not being able to empty my bladder for hours and hours and my bladder will cramp and I will be in a lot of pain and then all of a sudden for no reason I can empty it and I will empty 700-1200 mL of urine. So my PCP asked to see me at her soonest available appointment but that wasn’t until after the new year and I couldn’t continue doing this for that long so I scheduled to see one of her Physicians Assistants. I was literally in there for no more than 15 minutes and they didn’t doing any kind of exam. She didn’t lay a single finger one me. She just gave me the referral I originally asked for. So basically she charged me for an office visit to rehash all the information we had already gone over via MyChart. *insert eye roll*

Later that afternoon I met with a wheelchair specialist who evaluated me for a wheelchair. Thankfully this part of the process went much better than I anticipated. Prior to this I had contacted them multiple times to try to set up this evaluation but they claimed they hadn’t received my referral from my doctor but my doctor swore they had faxed it or I just plain couldn’t get anyone to call me back. It was getting really frustrating.

I had also heard some not so great things about this particular company from some of my local friends, but this gentleman seemed VERY knowledgeable and was very helpful. It doesn’t seem to be a question *if* I am going to be getting a wheelchair but what kind of chair. I think once we get through this process I will create a post entirely on this process alone just to keep all that information centralized, but for now we are proceeding with picking out the type of chair that will be appropriate for me and my body and my needs.

~Trinket

Update: 12/09/2018

This will be a short update just to preface the update that will come later this week after several appointments.

I am fighting some kind of infection. What we aren’t yet sure. I have been struggling with frequent UTIs that I don’t always show symptoms for. I was pretty confident this was a UTI, but we did a urinalysis and a culture and while the urinalysis came back with a lot of bacteria in it, the culture came back clean… which if you ask me, makes no sense.

Regardless… I am struggling. I am having a really hard time emptying my bladder. Sometimes at all. I will struggle with not being able to empty it for hours and hours and my bladder will cramp and I will be in a lot of pain and then all of a sudden for no reason I can empty it and I empty 700-1200 mL of urine (side note: I only know this because they gave me one of those containers to capture your urine when I did a 24 hour urine analysis and I have been using it to keep track). My physical therapist specializes in this area and says it’s abnormal for a bladder to hold more than 300 or 400 mL. I have also been experiencing pain where my kidneys/adrenal glands are. Which brings me to my next point…

Whatever is going on is affecting my Adrenal Insufficiency. My nausea is unmanaged even though I am on the scopolamine patch so I have no desire to drink or eat… and my fatigue has hit a new level. I am struggling to keep my eyes open regardless of how much sleep I have gotten. This morning around 2am I fell asleep with my laptop on my lap and slept that way for 8 hours. I woke up with my laptop still sitting, unharmed on my lap around 11:45 with my medication alarm (for my steroids) that goes off at 7AM still going off. I then put my laptop away and fell back to sleep until 5pm when it was time to change my patches and i am STILL exhausted. This all tells me that my cortisol levels are low.

I have been in conversations with my primary care doctor and she doesn’t seem immediately worried. I asked for a referral to a urologist for all the reasons listed above and she asked me to come in for her next available appointment. She didn’t have an appointment available until after the new year and I can’t keep dealing with until then so I am seeing one of her physicians assistants on Tuesday morning.

On Tuesday afternoon a wheelchair specialist is coming to my house to evaluate me for a wheelchair. We have been working on this for a long time. It’s gotten to the point where I can no longer be on my feet for long periods of time (more than an hour) without being in intense amounts of pain so I can’t enjoy outings with my family. By this I mean I can’t enjoy trips to amusement parks or museums or conventions or anything of that nature with my family. Anything that would require me to walk all day or stand in line for extended periods of time with nowhere but the hard pavement/ground to sit is just something I have to miss out on while everyone else enjoys and it’s not fair. And while I know life isn’t fair, it doesn’t have to be that way. There is equipment out there for people like me for situations like this.

My physical therapist does not want me in a manual chair as she is concerned that pushing the chair myself would do damage to my shoulders because of the hEDS. My uncle is a wheelchair rep out of Cleveland, OH and mentioned getting a light weight chair and adding smart drive to it. I don’t know how much control I have over this process but I am hopeful that this is the direction we are able to go in.

That’s all for now. I’ll let you know how the week goes.

~Trinket

Update 11/25/2018

A six weeks ago I told you all that despite having been scheduled for nearly two months, my smart pill “procedure” was cancelled four days before I was due to go in because insurance denied the prior authorization.

In the next couple of weeks that followed while I was in the process appealing the denial and figuring out next steps, I received a call from the scheduling department with the hospital I was suppose to have the smart pill done at and they told me that my local GI doctor was releasing me from his care and referring me to them. I was confused for obvious reasons…

A couple hours later I received a call from my local GI’s nurse called me and let me know that they were in fact releasing me from their care, but that I was being referred to the motility clinic in Indianapolis.

I guess what threw me off was that when I first met with this doctor… He was very confident that despite the fact that I had a complicated case, he would be the one to get to the bottom of everything… but now things seem a little more complicated than he originally anticipated so he is dismissing me from his care.

Don’t get me wrong. I am thankful that he knew my case was more complicated than he could handle and was willing to admit that and therefore referred met a doctor that he felt confident could… but it would have been nice if he would have called me and had that conversation with me instead of me having to hear it from a random stranger.

Well, that was roughly a month ago.

A couple weeks passed and I still hadn’t heard anything back from the scheduling department in regards to scheduling an appointment with my new GI doctor (Dr. Wo)…

So I took it upon myself to reach out and try to get everything sorted out. I did a quick Google search for the motility clinics reception phone number and I was able to find a phone number… but it wasn’t the right phone number… It turns out it was the phone number to the motility lab. I got a lab tech on the phone named Nancy. Nancy was incredibly sweet and helpful. She pulled up my chart and was able to see that despite releasing me from his care, my local GI never sent the referral to Dr. Wo’s office (which is why I never received a call to schedule my appointment). She suggested I call my local GI’s office and request the referral and then also call Dr. Wo’s office and speak with the nurse so that she knows to be on the look out for the referral. She then said that if I had not seen any progress within two days to please call her back and she would see what she could do or who she could contact to get the ball rolling.

I sent an e-mail to my local GI’s office requesting a referral while I was on hold trying to get transferred to Dr. Wo’s nurse. I never was able to speak with Dr. Wo’s nurse. I was transferred to the scheduling desk instead… where I was told that my local GI would have to call and schedule my appointment for as that served as the referral…and if that appointment doesn’t work with my schedule I would have to call back and change the appointment from there.

I respectfully reminded her that I was already on the phone and that it didn’t make sense for me to have to call back to change an appointment that would inevitably not work for me… There was some discussion back and forth… It took a few minutes, but we eventually both agreed that it made more sense for me to just go ahead and schedule the appointment being that I was already on the phone. She then looked at the schedule and there was an appointment available for three that afternoon (3PM on November 6th). I put her on hold and called my dad to see if we could make it work and he said we could so I jumped on it because otherwise the next available appointment wasn’t until mid December.

It was very last minute. I schedule an appointment for 3 that afternoon at noon that day.

Dad came to pick me up at 1:30PM and we jumped on the high way. Our trip was uneventful and we arrived with 15 minutes to spare which was good because we had never been to this hospital before. We had to take an elevator up to the sky walk from the parking garage and then an escalator down from the sky walk to the lobby of the hospital. They had all of their hallways named with street names. I have never seen a hospital do this before but it definitely made navigating the hospital a little easier which was much appreciated.

Once we found our way to Dr. Wo’s office and got checked in, we only sat in the waiting area for 10 or so minutes before the nurse called me back. They weighed me and then had me sit in a chair while they performed vitals (blood pressure, temperature, heart rate) in the hallway on the way to the room which I thought was odd. Once they finished vitals they had me continue to sit while the nurse sanitized all of the equipment she used to take my vitals before we continued on to the room.

Once we got back to the room, we went over my medical history and current medications. We were going over these things when Dr. Wo comes in and introduces himself. At this point the nurse no longer requests any information, Dr. Wo takes over.

He asks me why I am here. I explain that I have struggled with stomach issues for most of my life. That I have had issues with constipation off and on my entire life. That it put me in the ER as a small child a couple of times, but that they treated it with enemas and a few non invasive treatments like castor oil mixed with juice and/or a laxative or two. I also go on to explain that things have gotten worse as I have gotten older. That now I only go once or twice a week, but when I do go it’s not hard for me to go (quite the opposite, it’s diarrhea) and that I have A LOT of abdominal pain.

That of course triggers the “What kind of pain?” and “Where?” questions, so I try to go into as much detail as I can and then I continue on telling him that I am also having motility and absorption issues. Conveniently, or not so much, just a few days before I saw him I took some pain meds at 6:30 on a Sunday night and they didn’t kick in until 8:30 on a Monday night… yes, you did the math right. They took 26 hours to kick in (and for the record I know this because they make me feel high/disoriented which is why I don’t take them very often… I don’t like how they make me feel). I then go on to explain that my potassium is also always very borderline (3.4 or 3.5) and I take 2-20EU potassium pills a day. I have the same issue with vitamin D, calcium, my steroids…

He then asked several questions that made me re-realize that I have not been getting the care that I need and deserve.

During this conversation I was laughing out of awkwardness… now I am frustrated:

“You are on steroids… Why?”

“Because I have Primary Adrenal Insufficiency.”

“Why?”

“Because my adrenal glands failed?”

“Why?”

“I don’t know… we did several stimulation tests and my ACTH scores were high and my cortisol levels were basically non-existent so a doctor diagnosed me with Primary Adrenal Insufficiency.”

“Why?”

“Why are you asking me all the hard questions? You are the doctor!”

“I see that you are also on a scopolamine patch. Why?”

“Because I have constant nausea…and before you ask, I don’t know why, no one has ever dug into it.”

“But why?”

“I don’t know…”

And believe it or not our conversation continued on like this for several more minutes.

He believes that I have Dysautonomia which is affecting the nerves that control the motility of my gut (stomach and intestines).

We are going to appeal the denial of the smart pill. Fingers crossed that goes through because if it doesn’t then we have to do a lot of very uncomfortable and sometimes painful testing (neuropathy testing). He would also like me to have an anal manometry done and he would like to do some mitochondrial testing. I am not entirely what all that involves…

He also wants me to come off the scopolamine patch, but we are currently working to find a suitable replacement first. We tried Granestron ($386 for 6 days worth) in pill form and it caused a nasty MCAD reaction. I already tried the Granestron patch several months ago under the brand name Sancuso and it caused what looked like 2nd or 3rd degree burns because of the adhesive. We are now going to try Emend ($306 for one pill which lasts 12 hours. Comes to $18306 for the month).

He is also the very first doctor in three years to reach out to another doctor on my team. He is reaching out to my geneticist because my case is complicated and lets be honest, it can’t hurt to have them both collaborating right?

~Trinket

Update: 10/26/2018

We just finished meeting with my Electrophysiologist, Dr. Arnoldo and as it turns out I do not have Postural Orthostatic Tachycardia (POTS) or Orthostatic Hypotension… I have Inappropriate Sinus Tachycardia (IST) instead.

We know this because my Tilt Table Test (TTT) came back negative, which I already knew but my EP said that he doesn’t put a lot of weight in because TTT aren’t all that sensitive. By that I mean that people with POTS typically have an ebb and flow of symptoms… days where their symptoms are worse than others and days where they can function better than others. If they perform a TTT on one of your better days, you may test negative even if the test is an hour long instead of only twenty minutes.

It is actually not uncommon for people with IST to be misdiagnosed with POTS (and vice versa) because they present very similarly.

Symptoms for IST:

  • Palpitations
  • Shortness of breath
  • Exercise intolerance
  • Fatigue
  • Resting heart rate of greater than 100bpm
  • Sleeping heart rate of 70 – 90bpm
  • Minimal exertion, heart rate will rapidly reach 150bpm
  • Drop in blood pressure upon standing
  • Blurred vision
  • Dizziness
  • Syncope
  • Pre-syncope
  • Sweating

Symptoms for POTS:

  • Blurred vision
  • Lightheadedness
  • Dizziness
  • Syncope
  • Pre-syncope
  • Palpitations
  • low blood volume
  • high heart rate
  • blood pooling while standing
  • Headache
  • Poor concentration
  • Fatigue
  • Gastrointestinal symptoms (for example, nausea, cramps, bloating, constipation, diarrhea)
  • Shortness of breath
  • Head, neck or chest discomfort
  • Drop in blood pressure upon changing positions
  • Weakness
  • Sleep disorders
  • Exercise Intolerance
  • Anxiety
  • Coldness or pain in the extremities

I have gone through and underlined the symptoms that are listed under both conditions. As you can see, there are a lot.

So what next steps are… We discussed our options and we are going to increase my salt intake even further (i was eating double the normal human’s recommended daily intake… now I am adding 4 salt tablets to that). I am adding a medication called Ivabridine, one tablet twice a day, to my daily medication routine. I am increasing my exercise regime to strengthen my legs to try to keep the blood from pooling in the bottom half of my body. And we will reevaluate in 3 months.

Some patients with IST have an ablation on their heart done and we are trying to avoid that so hopefully these changes will help significantly and prevent us from having to move towards surgical options.

For the first time in a long time I finally feel like I have doctors on my team that are listening and getting to the bottom of things and aren’t calling me crazy or a hypochondriac. I hate that it took 3 years of decline to get here, but I am so thankful we are finally starting to get the right people on my team.

~Trinket

Update: 10/25/2018

This morning we headed north to Chicago to meet with Dr. Mary Tobin at Rush Medical.

Despite the heavy clouds, we were able to witness a beautiful sunset along the way.

Once we got there we were unable to find parking. The parking garage was completely full, but thankfully the residential area next to the hospital allowed parking on the street after 10AM and we arrived at 10:04 so we were easily able to find a parking space on the street.

Once we got inside, finding our way to our destination was fairly easy, thank goodness. We arrived earlier than suggested, I filled out the new patient packet, and Christine (see why I go by Trinket here?) was called back around 10:45 (my appointment was scheduled for 10:30).

Once we were back in the exam room, a nurse checked my blood pressure, asked me for my height and weight, and went over my current medications and known allergies. After that a resident came in and asked me for my medical history from the day that I got sick in August of 2015 to present. She typed notes as quickly as she could and asked for clarification where necessary. She then asked me about my allergy related symptoms (mostly daily hives, but also facial swelling, throat irritation, post nasal drip, etc). She then did a thorough exam and while she did the exam she explained to my dad and I next steps.

She said that Mast Cell Activation Disorder is still being researched and testing methods are still being determined. Currently there are 12 different testing methods, but they (at RUSH) are only using 5 of them. She said it’s very possible that my results will come back negative, and that doesn’t mean I don’t have Mast Cell, it just likely means that we aren’t using the right test (or testing for the right things) so they will diagnose based off of symptoms and whether or not I get relief from treatment, but it can take a while to find the right treatment. BUT my symptoms are text book Mast Cell, so they are confident that I fit the bill.

…Which and is why my allergist here in Lafayette was treating me as if I had Mast Cell without actually providing a diagnosis or confirming with testing prior to treatment…

She then left the room and briefed Dr. Mary Tobin and they returned together.

One thing I really appreciate about this department is that they work with a lot of people who have VERY weak immune systems or their immune systems overreact and which could cause anything from hives to anaphylaxis… so they ASK before shaking hands because they wouldn’t want to make someone ill or cause someone to have some kind of reaction due to the transfer of a chemical (from hand soap or lotion, etc).

Anyway, Mary introduced herself and asked for clarification on a couple things. She is pretty confident that all of this is something I was genetically predisposed to… Brooke’s side of the family has a history of connective tissue disease. My grandma (Brooke’s mom) had Lupus and my 2nd cousin has Ankylosing Spondylitis.

You are probably wondering what connective tissue disease has in common with Mast Cell. Other than they see a lot of patients that have both, I can’t yet answer that question for you.

but I left that appointment with three very encouraging pieces of information that helped me feel a LOT more hopeful leaving that I did when we arrived.

1. they practice with the idea in mind that treating a patient with multiple illnesses… it’s not necessarily about curing each ailment right out of the gate. It may not even be about getting all of the symptoms under control…instead, it’s about figuring out which ailments (and even symptoms) need the dire attention first and creating little patches for those first and once you patch enough of the “broken” parts…maybe the machine can start to properly regulate itself again and of course that is ALWAYS our ultimate goal!

2. they also operate with the notion in mind that their patients could possibly react to anything that they come in contact with (even if that is not the case, better safe than sorry). That means that any new medications are introduced at a fraction of the smallest dose and at an slow pace to help prevent negative, painful reactions. This may seem like a silly, extra precaution, but I am still super excited because it keeps other fighters safe?

3. and finally our treatment options. We haven’t made any finals decisions. We discussed gastrofin and ketotifen, but ultimately decides that these were not the right medications for me at this time. Then Dr. Tobin brought up something i never in a million years would have thought would have been a part of my treatment plan…IVIG.

We are obviously going to wait for the test results before making any final decisions, but it sounds like IVIG.

For those of you who aren’t sure what IVIG is and what it is used for:

IVIG stands for: IntraVenous ImmunoGlobulin. It is a blood plasma product (it is made from your plasma, to be given to those of us with wonky immune systems)

IVIG takes roughly 20,000 plasma donations to make and a single dose. It’s shown promise in assisting with immune systems (both over active and under active), assisting with neurological disorders decreasing inflammation and so much more!

For the first time, i am feeling hopeful for the future!

But on that note, let’s crash back to earth a little bit…tomorrow morning, bright and early we meet with my cardiologist I messaged him using the MyChart to try and see the results myself, but unfortunately could not… So we wait and twiddle our thumbs until tomorrow’s appointment.

As the saying goes “you will know something as soon as I know something!”

~Trinket

Update: 10/18/2018

Last Monday (October 15th) I saw my primary care doctor for a physical and a pap smear. It was my first pap smear in over 3 years as a result of my inability to find a local GYN that would take my case. You can read all about that by selecting Medical Updates and scrolling down to PCOS.

Anyway, all of the testing during my pap came back normal which is good because I have had an abnormal pap in the past.

After seeing my primary care doctor I was suppose to head to Indy to have the smart pill procedure, but you can read about that fiasco with insurance below. I am STILL working to get that resolved. I was suppose to hear back from insurance within 72 hours and it has been 10 days and I haven’t hear anything.

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Lower extremity nerve study 10/15/2018

So because insurance denied the smart pill, I headed to work and at 2:30, Dad picked me up drove me back across town for my lower extremity nerve study. I had an upper extremity nerve study completed during the spring. When they did it in the spring it cost just over $15,000. I am not sure if this comparable, but I do know the tech lives in Florida and flies in to Indiana during the week to perform these tests… Obviously flights and hotels (or an apartment) and transportation and such are all business expenses and have to be factored into the price.

…Anyway back to the topic at hand because most of my pain is in the lower half of my body, they felt that it would be beneficial to also complete the nerve study on the lower half of my body. It is not exactly my favorite test as it is pretty painful as they basically hook your big toe up to a grounding wire and then shock you over and over to see how well your nerves respond…but it’s over with now.

On Tuesday, October 16th I had a tilt table test. It went well. I did not pass out during the test. They were continuously asking me if I felt dizzy. I tried to explain to them that I am pretty much always dizzy but it is most noticeable for me when I don’t have both feet on the ground… and when do you most notice that? when you are walking. At first they didn’t seem to understand but during the test, if I picked one foot up to readjust to get more comfortable, my heart rate would climb pretty significantly… and when I put it back down it would go back down to a high resting heart rate. They were pretty confused by that. My blood pressure was pretty consistently low during the entire test as well.

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rash and skin damage just below bra band from electrodes
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rash on stomach due to electrodes
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rash and skin damage on chest due to electrode

I was able to remove the cardiac monitor on Saturday, October 20th. It was a major relief because despite waiting to receive the hypoallergenic, sensitive skin electrodes, my skin was still super unhappy about the adhesive. I was told to change you the electrodes every three days, but the sensor was really picky about where it wanted the placed so for the most part, despite replacing the electrodes, you were just sticking them right back on top of the already irritated skin which was not good. And to add insult to injury, my hEDS caused the electrodes to remove the skin when they were removed.

Shortly after we removed the cardiac monitor, while we were resting, a HUGE tree came down just a few yards down the road and took out our power. When the tree came down, it broke a telephone pole completely in half bringing down power lines with it. The power company responded quickly and was able to get the line repaired on this side of the tree within a an hour and a half or so but less than 10 minutes after the power was restored, a large tree branch came down, took the power lines back down and took the power out with it. That second power outage lasted much longer the second time around so we went to stay with my grandma just a few minutes after the power went out the second time.

I don’t do well with major last minute… adventures. They stress me out. I need time to plan. Mostly because it means packing not only myself (which includes medical necessities) but also my brothers and my kitty (who travels with us unless we are going to my grandparents in Missouri). And when a trip is last minute, I have to try not to forget anything… and ever since I got sick, my memory is not the best. I am always second guessing myself.

Not long after we were all packed and in the car, I had one of the episodes we believe to be seizures… while dad was driving. I can’t imagine how scary that was for him. I felt it coming. My world slowed down prior to the episode like it so often does. He noticed I wasn’t myself. Then I lost consciousness and was  not able to respond. I don’t know how long the event lasted in its entirety. I do know that we were at Grandma’s not long after. Thankfully, I did not have any more events for the rest of the weekend.

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At home EEG completed in my own bed 10/22/2018

This morning I had an EEG. I had an EEG done previously in 2015 or 2016 when I had a seizure at work. That seizure was what most people think of when they think seizure… I was sitting in my desk chair and I lost consciousness… there was muscle spasming (jerking)… I did not vomit or lose control of my bodily functions, but I did injure myself due to the spasms/jerking. At that time, my intracranial pressure was (and still is) unmanaged… so it is likely that seizure was caused by my intracranial pressure. The tech that performed the first EEG said that if the seizure was a result of too much pressure in my skull, that the EEG would be a waste of our time (and would come back normal) because these seizures would not be caused by electrical activity, which is what the EEG is looking for.

When I spoke to the tech from this morning the first time (when we were nailing down an appointment time), he confirmed that if these seizures were a result of increased intracranial pressure the EEG would come back normal because the seizures would not be a result of electrical activity which is what the EEG is looking for. We went ahead and performed the EEG to rule out Epilepsy.

He arrived just before 10am. Setting up the EEG took roughly an hour and a half. During that time we just chatted about a little bit of everything. He asked about my daily life, what I do for a living, my chronic illnesses, etc. He told me that his wife also had the misfortunate of being diagnosed with a couple of rare disorders.

Around 1:30 we were ready to start the test so we moved from the kitchen table, where we had been setting up the leads, to my bed. He asked me to close my eyes for several seconds, then asked me to open them again. We repeated this cycle a few times before he asked me too hyperventilate for 3 minutes straight. This made me light headed and made me feel like I was going to pass out. That was the hardest part of the test. After that he asked me to relax and try to rest for 15-20 minutes. I was able to fall asleep for a few seconds before he woke me up so that we could perform the strobe light section of the test. This part only lasted approximately 3 minutes. After that he asked me to keep my eyes closed for a few seconds before we cycled through the eyes open, eyes closed process a few times again. Then the test was complete.

Once the test was over, I continued to lay in bed while he finished his notes and sent the test and the results to my doctor. I asked him how the test went and he said that he is just an EEG tech, he doesn’t read the results, and that my doctor will be reaching out shortly with the results.

During the EEG I got a call from the motility clinic in Indy letting me know that my GI doctor here in town is releasing me as a patient and sending me to Indy. He has determined that my case is too complicated and would be better suited for a specialist. I am glad that he realized that I am outside of his expertise, but it would have been nice if he had listened from the beginning and referred me out months ago…

I am currently trying to cope with feeling like so often doctors view me as a challenge. They know going in that I am a complicated case that other doctors have struggled with but they think that they are going to be different… but when they can’t get to the bottom of the issue quickly or they can’t cure me, they get discouraged and instead of admitting that they were the problem and trying to approach the situation differently, they want me off their service. Not only is it frustrating, but it starts to have an impact on your mental health.

That is the complete update for now. We head up to Chicago to see Mary Tobin in regards to the Mast Cell Activation Disorder (Allergist and Immunologist) on Thursday so be on the look out for an update following that appointment!

~Trinket

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Update: 10/12/2018

Insurance denials and snow on my birthday makes for a really shitty birthday…

This weekend was supposed to be a three day weekend of sorts…because on Monday, October 15th I was suppose to have three doctors appointment.

We were suppose to start the morning with an appointment with my primary care physician who is going to complete my physical and a first pap smear. Once I was diagnosed with intracranial hypertension as a result of Depro Provera, I became a lawsuit liability and no GYN in the area would see me.

After that we were suppose to head to Indy where I would start the smart pill test. This test has been scheduled for two months. Last night, four days before I was scheduled to start. I received a denial letter in the mail. I immediately called my insurance company and started an expedited appeal. An Update: 10/12/2018 appeal will hopefully allow me to get an answer on that appeal within 72 hours…

Today I received a call from Amanda in the Pre-Certification Department at the hospital that was hosting the testing and she told me that we would need to either pay for the testing out of pocket or cancel the testing by 4:30PM today. I asked how much it would cost to pay for the testing out of pocket and she gave me the phone number of the Estimated Cost Department. I called them and got.

Unfortunately, I got their voicemail. When they called me back, they let me know that the”facility” fee would be $3583 and the doctor would charge an additional $300 to read the results of the  test. So a grand total of $3883 as long as everything goes as planned and we don’t need any x-rays to make sure that the pill has left my system or anything of that nature…

I then called Amanda in the Pre-Certification Department back and asked how soon I would be able to reschedule the test if I would have to cancel. I asked if I would be bumped to the end of the list once again. She said that she would need to call someone else before she could tell me for sure when, so she hung up with me and called me back a half hour later to tell me that she was sorry to inform me that if I had to cancel today, that I would not only not have waited two months for nothing, but should my insurance approve my appeal, I would have to wait another three months for my rescheduled appointment…

And THAT was èthe straw that broke the camels back.

I have spent those two months in excruciating abdominal pain telling myself just a couple more weeks and we will have answers and an official diagnosis and be able to get treatment… I spent two months taking baby steps towards the light at the end of the tunnel… and the light at the end of the tunnel was *FINALLY* within reach and now it has suddenly un out of reach again… further than it originally was even. And I cry EVERY time I thinks about it.

These tests are denied by insurance EIGHTY percent of the time. 8-0 percent of the time. Amanda with the Pre-Certification Department said that as soon as the doctor found out thlat it had been denied, he also issued peer to peer appeal request with the director of the insurance company. But it can take 2-4 weeks to hear back as to whether or not the appeal is approved or denied. I am thankful for his initiative and assistance and hope that increases my chances of an approval… but 3 months is so far away and I don’t understand why this process wasn’t started 2 months ago, not a few days before the test was suppose to happen.

After the test we have a lower nerve study in Lafayette @ 3 at my pain management doctors office. This means that they are going to hook me up to a “grounding wire” somewhere on each hip and then they will use metal electrodes to shock up and down each leg (separately) over and over. It is very painful and it sucks… it sucks so bad. I know because I already had this test done on my upper extremities. They came to the conclusion that I have carpal tunnel in each wrist… Which I don’t know that I believe because generally I don’t have many issues with my wrists unless I have just dislocated one or both of them… in which case of course I am going to have issues, I just dislocated them. My head, GI tract, and my lower extremities are my highest sources of pain… They would then use this information to determine if the cause of the pain is nerve damage or over active nerve response or something along those lines.

So now I will have my physical and pap and then go to work and then leave around 2:30 and go have my nerve study done…

And to top it all off… it was FREEZING cold and started snowing today…

For those who don’t know me well… I have ALWAYS (prior to illness) hated the cold and the snow. But now that I am ill, the cold makes my body hurt more and it makes my feet, hands, and face vibrate (as if I have been holding on to a child’s toy that was vibrating for a really long time and then set it down, but that sensation is still tingling through my hand and foot and face…). I also don’t like all the dead, brown everything… It’s so depressing.

So today has been shit. I deserve a redo.

~Trinket

Update: 10/05/2018

We received the cardiac monitor in the mail today. I haven’t fully decided but I will probably call and activate it tomorrow instead of tonight… allow myself to get a goodnight a sleep before starting the monitor. I have to wear it for 14 full days…that’s a lot of nights tangled in cords.

~Trinket

Update: 10/03/2018

On Wednesday, September 26th we saw a new neurologist, Dr. Horton. We saw him here in Lafayette, but he does work out of Indianapolis several days a week as well.

I am going to be honest… I am not quite sure how I feel about this doctor. He definitely gave me the feeling that he had better things he could be doing with his time. Whenever I get that vibe from a doctor, I am immediately no long interested… it feels like a giant waste of time to me. I am working on slowing down that shot gun reaction and trying to give more time before I make a definitive decision because I’ve learned that some of what I am picking up on in those instances has been “some of the doctors she has seen don’t know their ass from a hole in the ground and are treating her like a hot potato” and they are completely and totally right and have every reason to be disgusted.

I mentioned looking in to Chairi Malformation because my high pressure symptoms don’t resent like a normal patient with high pressure… By that I mean that a normal patient with high pressure will typically have worse pressure issues when they lay down or lay flat, this is because gravity allows the fluid from your spine to flow more easily up towards you brain. It goes without saying… but normal high pressure patients typically feel better when they sit or stand up because gravity helps the fluid flow towards the spine and alleviate some of that pressure off of the brain… even if it is minimal. I experience the opposite. I feel better when I lay down and worse when I sit or stand up. So much so that I am in so much pain that I projectile vomit when I sit or stand (if I am not on my fentanyl or scopolamine patches). This presentation is similar to someone with Chairi Malformation.

…but he blew me off when I brought it up.

He did however pay close attention to the heart/syncope issues that I have been having.

In June I started having these episodes… prior to some of the episodes I can almost feel them coming on, but others I can’t. I become very very lethargic… almost to the point of being unresponsive… sometimes I will even pass out completely or just become so unresponsive that I lose track of time. During the episodes my heart rate is in the very love 40’s to the mid 30’s (bradycardia).

We aren’t sure if it’s the bradycardia causing the neurological symptoms or if the bradycardia is a symptom of the seizure like activity… it’s a chicken or the egg type scenario.

So he ordered a month long cardiac monitor, an EEG, and an MRI.

In order for us to be able to do the month long cardiac monitor, he had to refer me to an Electrophysiologist (EP). An EP is a specialized cardiologist. Originally I was not going to be able to get in with the EP until the 19th of October but I got a call on Monday afternoon asking me to come in on Tuesday morning at 8:30, so yesterday morning we met with Dr. Arnaoldo.

Dr. Arnaoldo would ask me questions and then not let me answer his questions. I was getting REALLY frustrated. He wanted a lot of detail about the episodes I have been having and I would try to give him those details by relating the experience to other experiences I have had or by explaining why I don’t think it’s caused by another illness I have and he would just flat out cut me off.

For instance… I tried to explain to him that the very first episode I had was in the car when I was driving. And I told him at first I thought that even though I wasn’t fighting sleep, maybe I had fallen asleep behind the wheel because it had happened before prior to my diagnosis with Addison’s disease…

…then he cut me off.

And wanted to know if I was feeling tired or fighting sleep… I repeated that I hadn’t and went back to try to explain that prior to being diagnosed with Addison’s I had slept 9 full hours and gotten behind the wheel with my family in the car and drove only an hour and a half when I was so tired I was fighting sleep… so badly that I knew I needed to pull over I was just waiting for the next exit to come but I fell asleep before we got there… and this episode was VERY VERY different. I was not fighting sleep. I was not tired… One minute I was driving and the next I was waking up.

But I didn’t get to tell him any of that, because he cut me off before I could. He actually never got to hear any of that because he was pretty adamant he didn’t want to hear that or many other things I thought were important…

But in the end he ordered a 3 week long cardiac monitor and a tilt table test.

So between doctors appointments, testing, and physical therapy, this month is going to be jam packed… but hopefully by the end of it all we will have more answers.

~Trinket