hot flashes | Me, Myself, and Evan's

The First Day Back in the Office

Posted on July 13, 2016

This morning my husband dropped me off at the PATH train and I headed into work. I was a little nervous about the commute, but the morning ride wasn’t too bad. The train was crowded and I was scared someone was going to elbow me or shove me, but I managed to find a spot to stand that wasn’t too cramped. Luckily, the air conditioning was blasting in my train car, so I didn’t have to worry about having a hot flash or sweating too much. When I got to my stop, I waited for the crowd to disperse before going down the stairs. I didn’t want to feel rushed with everyone around me hustling to catch the next subway train or to get to their office. Once I made it through the turnstile and up the stairs to subway-level, I paused for a few minutes to catch my breath. I’d rather take a dramatically long time getting from the train to my office than rush it and have an episode. Once I felt ready, I headed up the steps to street-level and then into the office. I always knew I was lucky that my office building is essentially right at the top of the subway/PATH steps, but today that was beyond convenient.

I got on the elevator and headed up to the office. In case I haven’t mentioned it enough, let me be very clear – I am extremely blessed to work where I work. I have some of the greatest coworkers you could ask for. When I got back to the accounting office, I was the first one in so I unlocked the door and headed to my desk. On my desk was a beautiful bouquet of hydrangeas, roses, and daisies from my team! Waiting for me was also a bobble-head of our company mascot and a pen from our latest conference giveaway. I set down my purse and headed out to the main area to see everybody. I was greeted with hugs and excited squeals welcoming me back. I missed human interaction so much! It makes the work day go by faster and it is a lot easier to answer questions in person. The morning went by fairly quickly.

Every Wednesday our office has a catered lunch. Usually, a large group of us grabs our food and heads to a conference room to eat together and converse. I love our Wednesday lunches. It is probably my favorite part of the week and the part I missed the most. My coworkers kept telling me how Wednesday lunches weren’t the same without me, but I assumed that was just something they were saying to make me feel missed. I now know they weren’t just saying that. I definitely talk the most, but no one seems to mind. They seem entertained.

The afternoon flew by. I left a little early to try to avoid some of the train congestion during rush hour. I accidentally ended up in a train car that had no air conditioning. Normally I would have switched cars at the next stop, but I had a seat and I wasn’t willing to give up my seat. Getting a seat on the train is like winning the lottery. As more and more people crowded into the train car at each stop, the lack of air conditioning grew painfully apparent. By the time I made it back to NJ I was in the midst of one of my worst hot flashes ever. I don’t know how one can physically sweat so much in such a short period of time, but I managed to find a way. It was awful. After getting off the train, I had to walk up a long, winding, sloped ramp to get to the escalators to street-level. I should have stopped occasionally on my way up to catch my breath, but I was so sweaty that I just wanted to get to the car. By the time I got to the car, my heart rate was through the roof. I suppose that was probably my fault… Oops!

Based on the way my afternoon commute went, I am definitely working from home tomorrow. It is too much stress on my body trying to get into the city each day. I think I will take management’s advice and ease back into things. In other words, I will likely start by working a couple days a week from home. Next week, for instance, I plan to work Monday/Thursday in the office since I have appointments in the city those days anyways, but I will likely work Tuesday/Friday from home. I am not sure about Wednesday yet.

The Prednisone Problems

Posted on July 8, 2016

The Prednisone side effects are getting old – FAST. I just want to take a nice, relaxing, hot shower in peace! That isn’t an option. I didn’t even like showering that much until the steroids ruined shower time for me and now I want it back. I’m sick of short, cold showers. And feeling rushed. And did I mention cold? Using cold water is the only thing that seems to delay the overheating/hot flash/heart palpitations. Ugh.

Today I was getting dressed (putting on my pants, to be more specific) and, without any warning or buildup, my heart rate jumped to 165. It felt like my heart was trying to beat out of my chest and escape. Usually my heart palpitations gradually worsen and it slowly gets harder to breath. This was different, though. I got short of breath very suddenly and it scared me. I had to sit down. Oddly enough, my heart rate and breathing returned to normal almost as quickly as they spiked. It shouldn’t be that terrifying to put on pants. I would hardly call getting dressed a physical activity/exertion, but I guess I’ll add it to the list.

The other strange side effect I’ve been having now that I’ve been on high-dose steroids for six weeks is muscle weakness/tenderness. My husband tried to massage my shoulders earlier and the muscles in my upper back/shoulders were EXTREMELY tender and sensitive. Even though he was barely applying any pressure to the area, it was very painful. This concept is lost on me. There are areas on my lower legs where I have this problem as well. The area is sensitive and, when touched, feels the same way pushing on a painful bruise would feel. The part that concerns me is that there are no bruises there – not on my legs and not on my back. So why is it that these areas feel so bruised and painful? Is this the muscle weakness and destruction sometimes resulting from Prednisone usage? Will this problem reverse itself once I’m off the steroids or is this permanent? One more thing to worry about.

There is good news, though! Since the AIHA was the only one of the two diseases responding to the Prednisone and my hemoglobin went up despite the lower dose, I am fairly confident the doctor will taper my dose again on Monday! The taper will likely have little to no effect on my platelets, so it’s irrelevant in regards to the continued treatment of the ITP. Thank goodness! Get me off these things!

The Paranoid vs The Cautious

Posted on July 5, 2016

This morning my husband and I had to drive into Saratoga so that I could have a blood draw. We had to drive 50 minutes there and 50 minutes back all for a three minute blood draw, but otherwise it went well. I’m not sure how long it will take to get the results. I am much more likely to hear my numbers from the doctor than from the lab. LabCorp said they are going to mail me a copy of the results, but it could take 7-10 business days to receive. I’ll already have my next blood draw (and results) by then, rendering today’s results useless. I’m hoping my hematology center gets the results by Thursday and I can call them and ask for my hemoglobin and platelets. I’m not worried about the platelets, but I’m a little nervous about my hemoglobin. Since the RBCs were responding to the steroids, I’m afraid the taper will have negatively impacted them. I would love to at least be able to maintain a double digit hemoglobin number and triple digit platelets.

I had a lot of trouble with the hot flashes today. It was 80 outside and humid. Being indoors wasn’t enough to beat the heat. I had the fan directly in front of my face and was still dripping sweat. I had to go into the lake to cool down, which did work, but then when I got back up to the cottage my oxygen saturation was at 93 and my heart rate was at 164.

In addition to the heart fluttering and profuse sweating and shortness of breath (only when my heart is racing) I’ve been feeling lately, my stomach hurt earlier. This is the part I hate. The first time my hemoglobin was low I didn’t recognize any of the symptoms as a cause for concern. At the hospital, the nurses and doctors kept saying “at least next time you’ll recognize the symptoms”, but that’s not necessarily true. The reason the symptoms didn’t concern me the first time isn’t because I didn’t notice them happening – it’s because they are such common symptoms. They can be caused by anything. My stomach ache could be because I ate too much or too fast. Back pain could be related to an injury or stressor. These aren’t things that are going to set off any bells in my head. Right now it has the opposite effect though and ALL of these things are setting off bells. My brain keeps thinking any one of these common symptoms could be the sign I’m supposed to recognize or be looking for in terms of a relapse or drop in my numbers. Am I paranoid or simply being cautious?

Also, the fact that exertion of any kind, no matter how small, completely knocks me on my ass isn’t going to be good. Walking up about 20 stairs from the dock to the cottage caused my heart to beat like crazy. Imagine how my commute to/from work is going to be everyday. That is 52 stairs in the morning and a fairly lengthy walk uphill in the evening. It wasn’t easy or pleasant before and now it’s going to be even worse. Essentially, any time I have an “episode” where my heart starts racing, I have to sit down, relax, drink some water, sit in front of a fan or apply ice packs to my face and neck, and take deep breaths until my heart rate returns to a safe level. That’s going to get old FAST in the mornings. But I’ve already been out of work for nearly six weeks. I’ve been working from home as much as possible, but the last couple of weeks were useless between treatment and the nasty side effects of treatment. I feel guilty because my hematologist keeps pushing back the date in which I will be able to return to work. At the same time, though, I trust his professional opinion. The earliest I will be back in the office is Tuesday, July 12th, pending the results of my July 11th appointment and blood work.

I’m not even sure what the game plan for Monday’s appointment is. I’m assuming the discussion will be largely based on my blood counts. I figure if my counts are good, he will taper the Prednisone again and set up an appointment for the following week to check my progress. If my counts dropped, I’m not sure what happens next. I doubt they will have dropped low enough to warrant any kind of immediate action, but he may bump the steroids back up to 100 mg. I highly doubt he will increase the dose because he wants me off the Prednisone as much as I want to be off of it, but there’s always a chance he will choose that option. Regardless of my counts, I’m sure I’ll have weekly blood draws and appointments until I am off of the steroids completely.

Once I’m off the Prednisone, the doctor and I will be able to focus on what caused the sudden AIHA & ITP (ES) and how we are going to treat it long term. In the meantime, things are all still up in the air:

How did this first 25 mg taper affect my numbers? Is it going to affect my platelets too or just my hemoglobin? If my numbers didn’t drop does that mean my immune system fixed itself? Is it possible that this has gone away and will never be a problem again? Will the next taper be more drastic or would we expect to see the same type of results? At what point during the tapering process is relapse most common?

There are so many things I wish I could know before it’s too late. I don’t want to find things out the hard way this time.

The Busy Saturday

Posted on June 18, 2016

Around 9:30 I called my insurance company to check on the status of my IVIG request. After being transferred a few times they told me that the request was made on Wednesday (not Tuesday end of day as I had thought) and it takes 2-3 business days to process and approve (Thursday, Friday, Monday). She said to call back Monday and check on the status of the request, but my guess is that the insurance company will approve it Monday and tell the doctor who will then call me asking to start on Tuesday. It’s actually better that I get a full day’s work in on Monday anyways.

At 10:30 I got a haircut. I hadn’t had one since October!

I chopped my hair to shoulder length (a little past) and then went to lunch at Panera with my mother-in-law and sister-in-law. After lunch we walked from Panera to the mall entrance and my heart started fluttering. The pulse oximeter read 155+. It scared the hell out of me. Once I finally calmed down, we went into the mall to shop for a couple of hours. After being in there an hour or so I started to get very sweaty and overheated. Sweat was literally pouring off of me and running into my eyes. I sat down in front of a fan in the changing room for ten minutes and drank some water. Finally, my pulse returned to normal and I was able to continue shopping.

When I went to go to bed tonight, my husband’s heart was fluttering and he was having chest pains and vomiting so I took him to the ER in Milford. Luckily, everything looked normal and after a bag of IV fluids he was feeling better. The nurse and I spent most of the time talking about my condition instead. I keep forgetting the rarity and severity of my illness until I start describing it. Doctors and nurses seem fascinated by my condition, which I am not sure how to interpret. I talk about my treatment and diagnosis so casually and openly. It’s hard to know if I still haven’t really absorbed any of it or if I’m being optimistic for the first time in my life. Regardless, I am glad my husband is okay. After the month I’ve been having, it was nice to not be the one in the hospital bed.

The Symptoms

Posted on June 2, 2016

Leading up to my ER visit, I had a variety of symptoms that all presented themselves at different times and were seemingly unrelated. All of them could be explained away by outside forces – my crazy diet, moving apartments (lifting boxes and furniture), etc. It wasn’t until I was on my way to the emergency room that I realized everything had been a symptom. My body was shutting down and was trying to warn me, but I didn’t even think twice about it. The dates below are when I first noticed a symptom or something out of the ordinary, but it may have been going on much longer and I was too oblivious to notice.

Tuesday, May 17th
My husband and I signed a lease for a new apartment on May 9th and spent the next couple of weeks packing up our old apartment and driving things to our new place. On Tuesday the 17th, I didn’t think twice about the lower back pain I was feeling. It was fairly intense and I had no history of back pain, but it had been a few years since I’d gone through the stress and effort of moving, so I figured I was just a little sore.

Thursday, May 19th
I had a successful weigh in on my crazy protein-heavy diet and headed back to NJ with my husband. My crossbody purse felt heavy on my chest and I was very short of breath. It was late at night, I’d had a long day, and I have asthma, so I didn’t think much of it. I stopped frequently to catch my breath on the walk home. My chest felt tight, deep breathing wasn’t working, and my heart was racing (tachycardia).

Simultaneously, I was experiencing extreme muscle fatigue. I had only walked a couple of blocks, but it felt like I’d been walking for miles. My arms and legs felt weary and heavy like they were dragging me down. Again, I just assumed I was extremely tired from work and moving.

Saturday, May 21st
My friend came over to help us go through some boxes and make our place feel a little homier. After we returned from a walk around our complex, I started having an awful stomachache and a complete loss of appetite. I had to leave the room when my husband cooked dinner because the look and smell of chicken was making me physically ill. My food aversions only intensified over the next week. It was hard to get myself to eat anything at all and my caloric intake barely hovered around 500 calories. I assumed I was simply sick of the lean proteins I had been eating day-in and day-out for the last six weeks. The only thing I could manage to eat was scrambled eggs.

Monday, May 23rd
I still felt pretty crappy so I talked to some friends at work about my symptoms and they all had the same reaction – sounds like morning sickness. My friend and I bought a test from Duane Reade and set a timer… Negative! Thank goodness! Some of my symptoms just seemed to mirror pregnancy, I suppose.

I came home from work and almost immediately went to bed. I laid down for a “quick nap” around 7:00 PM and was awoken by my husband at midnight telling me I needed to eat something for dinner. Eggs again!

Wednesday, May 25th
My head was throbbing. I have had headaches before and I’ve been known to have the occasional migraine, but this was something different. It felt as though both sides of my head were being squeezed together and I could feel my heartbeat in my ears. I drank some water, chalked it up to stress, and let it go away on its own. That night I thought I had a fever, but we couldn’t find the thermometer, so I cranked up the A/C and tried to sleep through it.

Thursday, May 26th
The headache was back in full force, so I took a couple of Aleve and hoped for the best. It wasn’t until later that day that I got a little nervous. My urine had become a dark orange color. The vitamins I was on were known to make urine very bright/neon like a highlighter, but this was something different. I had no idea that dark urine was a sign of anything, so I didn’t worry about it. I figured I had eaten something weird – maybe something with food coloring in it.

Friday, May 27th
The first thing I noticed when I woke up was that my eyes seemed fairly yellow (yellow sclera). Perhaps I just didn’t sleep well. I forced myself out the door and counted down to the long Memorial Day weekend ahead simply relaxing by the lake.

At work my headache raged again. I took two Tylenol and just hoped to make it through the day. Around lunchtime I noticed that I was sweating profusely. This isn’t unusual for me, though. I tell people, “I sweat when I smile”. It has always been an issue for me. It wasn’t until I came back from the bathroom and my coworkers started telling me I looked pale that I got nervous. I headed to Dunkin’ Donuts and grabbed myself a bagel. I didn’t want to cheat on my diet because I had been doing so well, but I knew I needed to eat something – anything. I scarfed down the bagel and took the train back to NJ.

On the ride to the cottage I napped and tried to ignore my stomachache. It didn’t hurt when I was sleeping, so sleeping was my go-to. We made it safely to the lake and my mother-in-law saw how pale I was and immediately suggested a trip to the ER. I was stubborn and exhausted and just wanted to go to bed, so I forced down a protein shake and agreed I would go in the morning if my symptoms hadn’t subsided.

Saturday, May 28th
I called my aunt, a Nurse Practitioner, when I woke up and explained my symptoms to her. She is always very upfront and practical, especially with medical advice, so I knew when she insisted I go to the emergency room, I needed to go. At the time, I still didn’t realize how serious my symptoms were.