Health update!

I saw my hematologist about iron infusions, because 2 of my other doctors suggested that I would benefit from them since I have such severe fatigue and lack of iron in my diet. The malnutrition is really taking a toll, I can’t walk around much. I’ve accepted having to be pushed around in a wheelchair when out in public, unless I’m having an exceptionally good day. Anyways, I hadn’t seen this doctor in a while and she was alarmed when she walked in the room and saw me, because of the weight loss and the fact that I’m pale with a grayish tone to my face lol. She really thinks I would benefit from going to Mayo Clinic since Cleveland Clinic isn’t doing much to get to the bottom of things. However, Mayo Clinic is not really in the realm of possibility right now for financial reasons. There’s no way we could afford a flight and hotel, plus meals, etc. I’ve also heard it’s really hard to get in for an appointment. I’m still going to look into it though, do a little research and see how much it would cost. My doctor today also thinks I would benefit from iron infusions, but the insurance has to approve it and my insurance company hates me (for real, I think they’re plotting against me haha I’ve had so many problems with them). She said it would either be a 3 or 4 week treatment (once a week), OR it could be spread out over 10 weeks do decrease the side effects. I’m really sensitive to any kind of medication or supplement going into my body so I think I would do the 10 week treatment. However, it has to be done in the infusion center, I can’t have them done at home, which REALLY sucks since I JUST started getting my regular infusions at home. The iron has to be done in the hospital to monitor for adverse reactions. They do normally give Benadryl beforehand to try and reduce some of the side effects so at least there’s that. I might give a full dose a try, and if it doesn’t go well, then start doing the reduced amounts over a longer period of time. Let’s hope the insurance approves this, we’re really hopeful that it will help me. Stay tuned for more updates. I have lots of things I want to talk about, the list just keeps on growing!

Here’s my most recent YouTube video =)

My YouTube Channel

My GoFundMe – trying to raise money for a service dog, and for medical necessities!

❤ Gina

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“But you don’t look sick”

This is one of the most frustrating things to hear as a chronically ill person. I know that may sound weird; no one WANTS to look sick. But having an invisible illness such as POTS makes us seem less credible somehow. I have been accused of faking it because I don’t “look sick.” What does a sick person look like? You have no idea what sort of struggles a person may be going through based on how they look. One thing that drives me crazy is people who leave notes on the car of someone who parked in a handicap space who didn’t look like they needed it. This hasn’t happened to me personally, but I do get dirty looks when I use my handicap placard. I do not take advantage of it or abuse it like some people do. I only use it when I really need it. There are some days when I just cannot walk the entire length of a parking lot. Also, when you don’t look sick, sometimes family members don’t believe you, particularly extended family members who don’t see you every day and witness the things that you go through. ANOTHER one is when trying to explain your illness to a prospective dating partner, and they say “but you don’t look sick, so it must not be that bad.” Come on! Really?! Let me tell you something. Bathing is difficult. You’re lucky I’m not going out in public unclean and smelly. A bath is so exhausting that afterwards I no longer have the energy to do my hair or makeup most days. But I don’t look sick enough……..? I’m almost emaciated at this point and I’m still hearing “but you don’t look sick.” Okay, great, thanks, but I am. The biggest problem I’ve had is when you go to the doctor and you’re trying to explain to them how you’ve been doing, how bad your symptoms have been, etc., and they say something like “but you look so healthy!” This happened to me at the hematologist’s office. I was wearing makeup that day. Concealer, bronzer, blush, the works. She said, “You have great color in your cheeks.” Duh… it’s blush! So I no longer wear makeup to the doctors’ office. It’s sad when you feel like you have to make yourself look sicker so that doctors will believe you. Sometimes I do wish I looked worse than I do, but I know that I should be thankful. I’m just tired of not being taken seriously, and I know that a lot of other chronic illness sufferers feel this way, too. How do you guys feel about this? Comments are welcomed!

My YouTube Channel

❤ Gina

What is POTS?

When I heard the name of it, I giggled because I’m just so mature. POTS stands for postural orthostatic tachycardia syndrome. It’s a form of dysautonomia, which is a dysunction of the autonomic nervous system (ANS). The autonomic nervous system controls all of your body’s automatic processes like heart rate, blood pressure, digestion, circulation, body temperature regulation, bladder functions, etc. The requirement for a diagnosis of POTS is that a person must have a 30+ beat per minute increase, or over 120, within 10 minutes of standing. We also found that I have inappropriate sinus tachycardia (IST – resting heart rate over 100) which is another form of dysautonomia. Luckily, that has gotten a little bit better with my new medication.

The tilt table test is very effective for diagnosing POTS and other forms of dysautonomia. My test was a nightmare. I had it done in the fall of 2014. I truly didn’t think it would be that bad. They strap you to a table, start an IV in case they have to quickly give you medication, put on a blood pressure cuff, EKG, and pulse ox. They leave you laying down for a little bit to kind of calm the body down. First, they tilt you up to 30 degrees and measure your heart rate and blood pressure. After a few minutes, they tilt you to 70 degrees and begin monitoring your vitals closely. This is when the symptoms should start if you have anything wrong with your ANS. I didn’t feel too bad for the first minute or so and then my heart rate took off, I could feel it beating so hard in my chest and in my throat. I was nauseous, sweaty, had chills, my body felt weak, my blood was pooling in my legs and feet, and at 19 minutes in they had to put me down because I started to black out, and my heart rate went to 172 and my blood pressure dropped to 82/48 roughly. We had a pretty definitive answer, but didn’t receive the actual diagnosis until the next time I saw the doctor. Official diagnosis came in December of 2014. But he still wanted to do more testing and have me see other doctors to rule out things that can mimic POTS, like a rare adrenal gland tumor called a pheochromocytoma (luckily I don’t have that). Tests, tests, tests…. and more tests. I had a QSART, which is a test that measures the autonomic nerves that control sweating. It can also help determine whether or not you have some type of peripheral neuropathy. They put a few little sticky patches on a few different parts of your body and they stimulate your skin with a current, which they said would very mild (liars!) but it felt like 1000 bee stings. My results were normal. My doctor, not satisfied with the results of the QSART (because he thought that I had neuropathy), ordered a thermoregulatory sweat test (TST). This was in April 2015 (before I started losing weight like crazy). It was so bizarre. Definitely the weirdest test I have ever had. They give you a paper bikini, you lay on a table, and they cover your whole body with yellowish powder. This powder will turn purple wherever you sweat. They then put you in a 100+ degree box, and monitor your internal body temperature with a thermometer, and your external body temperature. The theory behind this test is that the sweating pattern can be indicative of certain types of neuropathy. I thought I was going to pass out laying there. I don’t do well in prolonged heat so that was just… yuck. But I wanted to make it the full hour so the results would be accurate. After the hour was up, the nurse pulled me out of the box and she said “wow!” I hadn’t seen anything because I couldn’t lift my head yet. When I was finally able to get up, I looked in the mirror, and I didn’t sweat from the waist down except my knee caps (that’s random haha), and my sweating was patchy on my hands and stomach, and then I sweat profusely from the chest up. Showering that stuff off was horrible. It stained my skin for a few days. I’m going to share this pic with you even though it’s incredibly embarrassing. It’s just too funny not to. Most people who have nothing wrong come out with normal sweating all over, so pretty purple. Well….

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(Gotta love that awful paper bikini.) My feet were also still cold after getting out of there which is highly abnormal. My upper chest is how my whole body should’ve looked if my nerves were normal. And check out my forehead! Whew I didn’t realize how sweaty I get. Sorry, people who come in to contact with me in the summer time haha. My doctor was fairly confident at this point that I have small fiber/autonomic neuropathy. So he ordered a skin punch biopsy. That test wasn’t too bad. They take samples from 3 spots on your leg: outside upper thigh, outside knee, outside ankle. They numb you with lidocaine and then you feel nothing. They healed well. The results of this test were very strange to me, and the doctor was surprised… it was normal. The doctor said that even though the skin punch biopsy is the “gold standard” for diagnosing small fiber neuropathy, it is not perfect. If they take a sample from a part of your leg where the nerves aren’t damaged, it can cause a false negative. So he’s going with the diagnosis from the TST.

We are still investigating the cause of my dysautonomia, and my neuropathy. Normally, if you treat the cause, the secondary issues (dysautonomia, neuropathy) will improve. I’ve had so many tests done and we don’t know, so that’s frustrating. I didn’t just wake up one day and have this. It happened gradually over time. Now it’s just steadily getting worse. I think there’s something going on with my immune system but who the heck knows.

❤ Gina

Here is my Go Fund Me in case anyone would like to help, or even just sharing my story is plenty =)

https://www.gofundme.com/ginasmedicalfunds

Also, here is the link to my YouTube channel… it’s mostly a video diary but I’m also using it to bring awareness to dysautonomia/POTS and the various things that go along with it, as well as mental illness, and the cross-section between chronic illness and mental illness.

 https://www.youtube.com/channel/UCp0o5VHKlgsThHYQB33jTFg

My most recent video. I know I look a mess but that’s okay.

Introduction to My Life With Chronic Illness

Where to start? First I should explain what a “zebra” is in this context, since we’re not talking about the cute black and white striped horselike creatures =P In medical school, doctors are taught to look for the obvious problem. The saying goes, “When you hear hoofbeats, think of horses, not zebras.” A zebra is someone who has either a rare condition, or a rarely known condition, or some weird thing no one has ever heard of… an “exotic” diagnosis. I’ve been called a zebra by multiple doctors, but I’m good with that haha at least they know.

 I’ve pretty much been unhealthy since I was 12. That was the first time I got mono, and I haven’t been right since. Between my health and my anxiety/depression, I was homeschooled the last few years of middle school and throughout high school on and off. This was the beginning of my isolation from the “normal” world. I struggled with my health and my depression, battling it alone (aside from my mom who is my best friend). I got mono twice more: as a teen, and when I was 20. I took 2 years off before starting college. I knew I wasn’t ready, mentally or physically. I started college in 2010 to get my bachelor’s degree in psychology. Going to school is what made me realize something was wrong, more than what I had been dealing with before. The stairs were hard to climb… I couldn’t go up a single flight of stairs without feeling like I was going to pass out. There’s an elevator that’s intended for use by disabled individuals, and because I didn’t consider myself “disabled” at that point, I suffered using the stairs. I would arrive to class sweaty and out of breath. I started realizing my heart was racing, even just sitting down. I would go to the urgent care for a cold or whatever ailment, and they would say “your pulse is high, are you nervous?” and I didn’t think anything of it. This happened often and still does sometimes. A lot of the time, people would blame my symptoms on anxiety. Yes, I do have anxiety, but this was different. This was my body, something was out of whack. In my college biology class, we did a simple lab in groups of 4. We had to take each other’s pulse and blood pressure. Once everyone submitted their data, our professor compiled a graph. Every single heart rate was in the normal range, except for 1…. mine. I was the outlier. My heart rate was 117 sitting down. I just have to throw this in here because I’m so proud of myself. I finished my last semester of school from home (which sucked) and graduated summa cum laude. It was the best thing that had happened to me in a long time. I needed that high GPA to help me get in to grad school, which may or may not happen now but we’ll see. Back to my body realizing that it hated me haha. Another red flag, my body trying to tell me something wasn’t right. And then I decided to give blood. I don’t know what possessed me to think that was a good idea, feeling the way I did. I didn’t weigh enough to give blood and hadn’t eaten anything that morning because of my nausea and stomach issues, but lied about my weight and said that I ate breakfast so they would let me donate. I would come too realize this was a horrible decision. I felt incredibly ill while I was giving blood, sweaty and nauseous, heart racing. Afterwards, I felt faint and could barely walk on my own. My brother had to come pick me up. The sequence of events with my health getting worse is not clear, it seemed like everything happened gradually and then hit me all at once. I also noticed over the course of time that my feet turned purplish blue when I sat down or stood still for too long. They were also ice cold, along with my hands. It wasn’t until I mentioned my symptoms to my counselor, I think I was 24 at the time, and she said “I have a few clients with this exact problem. They have POTS.” Of course I had no idea what it was, so I went home and googled (yep, good old Dr. Google). POTS stands for postural orthostatic tachycardia syndrome, a type of dysautonomia (autonomic nervous system dysfunction). I read through multiple sites and couldn’t believe it. Everything fit. The heart rate issues, the sweating, the trouble with going up stairs, problems with my stomach, the blue feet, and a few other things I’m sure you’d rather not know about. So I googled some more and found a cardiologist/electrophysiologist who was supposed to be one of the good ones for treating autonomic dysfunction. I made an appointment. When I went there and sat in the waiting area, I noticed that I was the only young person. I started to think hmm maybe I don’t belong here, maybe it’s not that serious and I should just suck it up and deal.

During intake, the nurse asked me why I sought out Dr. J, we’ll call him. I told her that I thought I have POTS. And her response was, “Oh God you’ve been googling.” I found this to be offensive. If it weren’t for my counselor mentioning it and my googling, I never would have figured out what was wrong with me and I would probably STILL be wondering and sick with no answers. Autonomic testing was scheduled. The first being a tilt table test, and let me tell you, this was the worst test I have ever had to endure. They gradually tilt you up to a 70 degree angle, while you’re hooked up to a blood pressure monitor, pulse ox, and EKG. In normal people, this has no effect on them. In people with autonomic dysfunction, things get a little crazy. While tilted, I immediately started feeling nauseous, sweaty, lightheaded, etc. At 19 minutes into the test, my heart rate went to 170 and my blood pressure dropped to roughly 82/48. I started to black out, so they put me down before I would have a chance to pass out. This was a definitive that I had autonomic dysfunction. I went through all the heart testing and my heart is just fine. The tachycardia (fast heart rate) comes from the autonomic nervous system “misbehaving.” I also had hemodynamic testing, to measure blood pooling (if any) and low blood volume. We found that I have severe venous pooling (hence the colorful feet). This means that the vessels in my legs aren’t pumping the blood back up through my body when I stand. It just stays there, which is what causes the lightheadedness and tachycardia upon standing. Secondly, I have moderately low blood volume (red blood cell volume and plasma volume), about 19% low, which also causes tachycardia. Thank God for figuring out what the heck was wrong with me, but what did it mean? There is no “cure” for POTS, and no single medication or treatment that works. It’s all trial and error, and we’re still trying to get things regulated. A good percentage of people with POTS become disabled and unable to work. At this point in time, that’s me, but I’m hoping for a change in the near future. All Dr. J told me was that I needed to eat 5 to 7 grams of salt (it’s a lot) and drink 2 liters of Gatorade a day (to help increase my blood volume), and exercise. I thought, how the hell does he expect me to eat that much salt and drink that much Gatorade when I’m struggling to eat as it was. And exercise?! It seemed impossible. So I got depressed. He wouldn’t prescribe any medication, he wanted me to try the lifestyle changes first, which I tried and couldn’t manage, but he wouldn’t listen. He also told me I needed to be treated locally, instead of by him. The only helpful thing he did suggest was IV infusions to boost my blood volume, but that I would have to get them prescribed through my primary care physician (PCP), which I didn’t have at the time. When I found a new one, she was awesome and I knew from the beginning she would be one of the best doctors I will ever encounter. Since Dr. J had already said infusions would be okay, Dr. S had no problem prescribing them. Yay! My first infusion, I couldn’t believe how much better I felt. I went twice a week to the infusion center at the hospital, and each infusion took 4 hours. After 4 and 1/2 months of enduring 8+ hours a week at the infusion center, and running out of usable veins, Dr. S gave the okay to have a port put in. I was so thankful. The procedure went horribly, but I’ll post about that separately. So I have my port now and I love it; it’s so much easier than peripheral IVs. I was also now able to get my infusions at home!!!!! They taught me to de-access my port, and I’m hoping they’ll teach me to access it soon. Yessss!

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My stomach started getting bad I would say before last Thanksgiving, but then got increasingly worse. I’m now to the point where I can’t eat but a few bites without wanting to throw up. I have no appetite. They’re thinking I have gastroparesis, which means slow gastric emptying. It causes a feeling of fullness quickly, can cause a big bloated belly, nausea, pain, and vomiting. I’ve lost 30 pounds and still losing. I’m 5’5″ and at 99lbs. My heart races even more than it did, from lack of nutrition and from being dehydrated despite the infusions (POTSies need 2-3+ liters to drink daily which I can’t manage). I’m getting weaker. My cognitive functioning is worsening. I’m depressed, I’m sick, and I’m tired of it. I did have a recent Cleveland Clinic hospital admission to give a NJ feeding tube a try, but that whole situation was a mess, which I’ll post about separately. On 5/10/16, I’ll see a nutrition doctor who is on a team of doctors with my gastroenterologist, to evaluate my nutritional needs and whether or not we’re going to put in a tube. Honestly, I want the tube. I just want to feel better, and I’ll do whatever it takes.

My YouTube Channel

❤ Gina

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