December 5, 2016

Life Lately

Wow...November was a crazy month. And "crazy" is an understatement. I so welcome December, especially since there are a couple special days in the month - my birthday and Christmas :)

Just as a disclaimer this is a long post about a blood disorder called Autoimmune Hemolytic Anemia (AIHA). I've also sprinkled in bits of my career update as well.


I originally wrote about how I quit my job in September, however, I ended up officially resigning in November. I quit my job on a Monday and by that Friday (Nov. 11th) I was severely ill with a 105 degree fever. It took me 6 days with a 105 fever before I went to the ER (yeah, in retrospect, I should have gone sooner), but my doctor originally thought I just had a virus (Parvovirus B19) and there's really not much you can do but ride out the horrible symptoms.  I didn't have a virus. My doctor ran a battery of lab tests as a process of elimination and everything came back negative - no strep, no pneumonia, no mono, no parvovirus. Then she saw my hemoglobin levels and red blood cell count and freaked out. As soon as my doctor saw my blood levels, she called me immediately to tell me I needed to go to the ER and receive an emergency blood transfusion.

What? I couldn't comprehend what my doctor was telling me. I am someone who hardly ever goes to the hospital and let alone rushes to an ER. Now I needed a blood transfusion? I just couldn't wrap my head around receiving someone else's blood.

It all started with a small infection on my finger - which I still have and I have no idea how I obtained the infection. I went to the doctor for a topical antibiotic ointment, but she just told me to apply Neosporin. The infection got worse, so I was prescribed an oral antibiotic in the Cephalosporin family (Keflex). I took it for 1 week and my finger improved, but the infection didn't completely heal. My doctor then gave me a second round of antibiotics and that Friday I took the first of my second round and 4 hours later I had a 105 degree fever.

My body was having a severe allergic reaction to the medication. At this point my body was attacking itself. It had created antibodies that were attacking my red blood cells. I had developed Autoimmune Hemolytic Anemia - an extremely rare blood disorder that effects 1 in 100,000 per year - yup, I'm that statistic.

My case was pretty severe - when my doctor reviewed my lab tests, my hemoglobin was at 6.2 which is critically low and by the time I was admitted to the ER it had dropped to 5 - anything below 8 is considered potentially life threatening. It was pretty touch and go at this point because your hemoglobin carries oxgyen to all your organs and if you're not receiving enough oxygen to your organs, you begin organ failure.

I thank God for the amazing ER doctors, ER nurses, attending doctors, telemetry nurses, and my hematologist for providing amazing care and for figuring out what was wrong with me. It's a bit scary when you're hooked up to multiple IV's in the ER and all the doctors and nurses are staring at you and unsure of why you're so sick. I'm also so grateful for people who donate blood - the blood pretty much saved my life alongside the doctors and nurses :) Seriously, doctors and nurses are my heroes (not to mention my mom who is also an RN and was by my side the entire time).

Not to sound too dramatic, but I'm on the road to recovery. Every week my blood tests improve and I'm hoping in the next couple of weeks I only have to do 1 blood draw a week. My hematologist is monitoring my condition closely and I'll be on medication for the next 2 months.

This experience has shown me first hand how fragile life quickly God can give and take away. He has blessed me so much through this trying experience. I am definitely slowing down more and I know for a fact that leaving the tech industry was the right decision for me at this moment. I start my new job this week as a nanny! I am over-the-moon excited about this new chapter in my life. I've always wanted to work with children, but never took the plunge due to financial reasons. I'm still not sure how I will make ends meet by taking a significant pay cut, but I know I will have so much more joy in my heart working with children.


I, also, wanted to mention the medication I'm taking in hopes that this will help others who are dealing with the intense side effects of this medicine - Prednisone. This is an oral corticosteroid. It saved my life along with the blood transfusion, but I see it as a necessary evil. Prednisone has so many awful side effects and I'm extremely scared about the tapering off of this medication because I've read that the withdrawal symptoms are even worse than the side effects. I trust my doctor knows what she's doing and will taper me down properly so I don't experience any withdrawal symptoms.

I know this is probably way too much information, but I'm going to share my side effects from this powerful drug below and how I manage to deal with it as I've been on this medication going on 3 weeks now and will be on it for the next 2 months, unfortunately. I started at 50 mg/ day and my hematologist is having me taper down in increments of 10 mg every 2 weeks. I'm currently at 40 mg/ day. I'm sure if you're taking this medication, you know that you should never just suddenly quit taking it as you will have severe withdrawal symptoms.

Please note, the recommendations listed below worked for me and may not work for everyone, so please do your own research and speak to your doctor if your side effects are severe.

Constipation/ Bloating/ Gas - I've never, ever in my life been so constipated or gassy :( Prednisone causes a lot of stomach issues, which is why doctors prescribe an antacid to take along with the medicine. I'm managing my stomach issues by taking a lot of peppermint oil and tea - it's proven to help with bloating and gas and it sure does help relieve my tummy! I take peppermint oil capsules immediately after I take Prednisone. In the evening I will take my fiber and some evenings I take a laxative to help stimulate things in the morning. The laxative (Bisacodyl - 5 mg) is powerful, so be very careful taking this as well. I can only take this in the evenings when I feel constipated, I would not take a laxative on a daily basis unless you are constipated everyday. You don't want to overtake this medicine as it will cause diarrhea.

Insomnia - I've been averaging 3 hours a sleep per night while on this medication, which is absolutely crazy. I've always been one to sleep forever and ever...but this drug is no joke. I will fall asleep and then wake up at 3 or 4 in the morning and am wide awake, unable to fall back asleep. Instead of taking more drugs (sleeping pills), I've found that taking 5 mg of Melatonin and drinking some magnesium gives me a solid 5.5 - 6 hours of sleep - which is AMAZING while on this drug. If all else fails, 2 Benadryls (50 mg) also works, but I prefer the more natural route. This is my favorite magnesium drink and it also doubles as a light laxative, so double duty for my situation :)

Mouth Issues - Dry mouth, thrush (yeast infection), and swollen tongue. This side effect was the first one I noticed, followed by my stomach issues. This one is challenging and I haven't really found a solution, but taking probiotics seems to help with the thrush - in the beginning when I was taking 50 mg/ day I had so much white stuff in my mouth - disgusting. Now, that I'm taking probiotics and tapered down to 40 mg/ day, the white stuff has gone down quite a bit. However, I still have really dry lips, throat, and swollen tongue. The swollen tongue makes it hard to eat food - lots of food with high sodium seems to irritate and burn my tongue and food seems to taste a bit differently.

Dry Skin/ Thinning Skin - I was shocked at how dry my entire body has become. Not only my mouth, but the skin on my body. On my birthday, I wore my skinny jeans for the first time and when I took my pants off, I was shocked to see marks on my stomach that looked like dry stretch marks. What happened was that my jeans rubbed the front of my stomach and my skin started peeling :( I can't even put lotion or oil over it because that causes a rash. Right now my stomach is just flaking off skin and has some exposed areas of pink. If anyone has any great lotion recommendations I'm all ears! Right now, if I apply anything (lotion, moisturizer, oil), I develop a rash, so I'm still on the hunt for a solution for my severe dry skin.

Water Retention - When I first came home from the hospital and was taking 50 mg/ day, I developed cankles! All the water went to my feet, ankles, and legs. They were so swollen, sore, and tender. I have noticed that forcing myself to walk more and moving around has relieved me of this issue. Sometimes I have water retention in my face where my lips feel swollen (duck lips, anyone?) as well as my cheeks, but as I've tapered down to 40 mg/ day this sensation has gone. I haven't experienced the "moon face" thankfully!

Shakiness/ Loss of Balance - I'm not sure if my slight shakiness or loss of balance is due to the drug or if it's mainly my condition (anemia), but I've noticed at times a bit of instability in myself. I'm hoping as I taper off the drug, I'll get stronger and stronger.

Acne - Yup, my acne has returned. I currently have 4 active breakouts on my face, but honestly, this side effect is one of my least concerns. I'm hoping it'll just dissipate as I taper down on the drug.

Blurred Vision - This is one side effect my sister warned me about. She told me she was prescribed a low dose of Prednisone when she was all inflamed from mosquito bites but quickly stopped taking the medication due to blurred vision. This one comes and goes and is not as severe or prominent as my other side effects, but it still exists for me.

Increase in Appetite - HUGE increase in my appetite. My friends were shocked at how much I ate for my birthday dinner. The thing is - I'm not gaining any weight - and no, I'm not bragging about how much food I can eat and not gain weight. I WANT to gain weight - 10-15 pounds would be ideal/ healthy on my frame. It's just so strange that I'm constantly eating but not gaining a single pound...yet. I guess everything I'm eating is going to the production of my red blood cells.

Suppressed Immune System - Of course, this is one of the biggest side effects. It frightens me that this drug masks infections - you could basically have a huge infection and not realize it until it's been developing in your body. I'm constantly washing my hands and avoiding large public areas as much as possible. I'm currently awaiting a few tests my doctor ordered since I'm on a such a high dose of Prednisone - I'm nervous for the results and hoping everything comes back negative.

So far, I have not experienced and I hope I will not experience any of these common side effects - moon face, excessive facial hair growth, joint pain, dizziness, mood swings, anxiety, or depression.

If you made it this far, I congratulate you! Also, if you are on this medication, I hope my tips help you with the never-ending side effects of this drug. Prednisone is a necessary evil for some of us as it has saved our lives, but dealing with the side effects can be so brutal on the body.


I promise the next post will be more fun - lots of talk about the NYX lip products :)

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