And P.O.T.S. Returns

December 2013

Had a bit of energy this week… I decided to try to make dinner myself.

BIG MISTAKE!

While attempting to put a pot of taco meat on the table to make tacos for the kids, the room started spinning.  I had enough time to get the pot on the table and get into the living room before things went dark.

I don’t know how long I was out, only a few minutes I think.  But I stayed on the floor for a while, with my feet up.  Suddenly baby was moving frantically.  I was so scared.  Thankfully my nurse was on her way.  My blood pressure was 85/55, heartbeat slightly irregular.  Definitely a NCS/POTS episode.  I hadn’t had one in months, and this was the worst.  I had to take antibiotics when I got the blood clot a few weeks ago, and from what friends and doctors told me, antibiotics can mess up the system, even weeks later… yay.

Kate told me to take it easy for the next day or so, since I’d be seeing the doctor that week.  She gave me my 3rd shot – she was right, one hip hurts more than the other!

At my appointment, I was informed that I’d probably have to go back on the IV.  Probably not long-term, not yet at least.  But enough to get me rehydrated.

I’d gained 1 pound at my appointment, a good sign.  But liquids are still a big issue, and I’m still getting sick daily.  With Thanksgiving this week, I really just want to rest and enjoy time with my family… maybe some time at Mom & Dad’s will get me back on my feet.

Surviving my first year with P.O.T.S.

December  2013

Surviving my first year with P.O.T.S.

My New Year’s resolution for 2013 was to eat healthier and run a 5k.    Who would’ve thought cutting out french fries and soda would darn near kill me….

I’d been diagnosed with NCS after the birth of my daughter Samantha in 2005.  I’d been exhibiting symptoms for YEARS, but because they came and went, and seemed ‘unrealistic’ to my childhood pediatrician, it was untreated.

I’d spent a few years taking Toporol and a variety of Beta Blockers, all of which were absolutely awful, and actually caused some pretty severe anxiety issues.  One morning I woke up and decided that I wasn’t going to allow the headaches and dizzy spells control my life, and I threw my pills away, in Jesus Name!

I’d been symptom free for about 3 years, a few bad days here and there, but nothing like it had been.  Then Pastor called for a church-wide Daniel Fast, and I thought it was a perfect time for me to cut my yucky soda habit.

And no, I’m not exaggerating when I say it almost killed me – started having my first ‘episode’ (considered by my neurologist to be seizures) while driving.  Not good, but I was able to pull over before things really got dark. 

I didn’t really realize what was going on.  I did a 48 hour detox water drink (water, cucumbers, lemon and mint), to help cleanse out the chemicals in my body.  It was supposed to last a week, but I couldn’t handle more than 2 days.

I switched to just water, no juice and NO SODA and still felt really dehydrated, like I was voiding more than I was taking in, when I knew I was drinking at least 70 oz each day.  Then other weird symptoms started to develop.  My word would slur, or I’d use the wrong word completely.  I’d lose focus, and would be extremely exhausted.  All this within a 1 week period.  I went to my doctor (who was a new doctor, fresh out of med school), who was testing me for diabetes, everything came back normal.

So I went to Facebook to lament.  I’m thankful I did, because a few high school classmates of mine had also recently experienced similar symptoms and had been given a diagnosis of POTS.  So I looked it up.  Sure enough, everything I’d been experiencing was right there.  So I printed out the information I found and brought it to my next appointment.  She’d heard of POTS, but was told in one lecture that covered it, that she’d likely never see a case.

As it happens, she’d had a patient come in earlier that day who also had already been diagnosed with POTS, and was picking her brain about her condition because her case reminded me a lot like mine.  My doctor told me that the brain fog and word jumbles were this other patients biggest hurdle, as she was a university professor.

The more research I did, the more people I spoke with, I realized that this was going to be another fun battle.  I needed to maintain my BP or the seizure would start again (Gotta love when the Doctor tells you to add salt and caffeine to your diet) and I needed to keep my stress levels low (Did I mention I have 3 kids?).

We tried some meds but I hated them.  The Beta blockers gave me anxieties again, and the BP meds made me exhausted.  I phased them out and trusted in Healing, because medications were not the answer.  I adjusted my diet, added salt (I honestly don’t use salt in my cooking) and enjoyed my tea and soda.  I also forced myself to drink more sports drinks (the zero calorie ones, which are gross, in my honest opinion).

I still have bad days, and I’ve learned from others with POTS and from experience what triggers can be such as antibiotics and dehydration.  I may have to deal with this condition from time to time, but I’m not going to ever let it control me.

Shots Shots Shots!

Week 17 AKA:  my worst week yet.

Now that I’m not getting fluids through the IV, I really needed to try drinking more.  On a good day, I might get 20 oz in.  But I really needed 40-60 at least!  The Zofran helped me from getting really sick, but didn’t prevent the nausea.  The problem with it, while I could take 8mg every 8 hours, it really only gave me relief for 3 to 4 hours before it faded away.  It made for some unpleasant days at work.  The last thing I wanted was for anyone else to have to be around me when I was getting sick.

The doctor has tried to get me a prescription for Diclegis, but the insurance wouldn’t cover it.  They had some samples to give me, hoping that the insurance will cover it now, since we’ve exhausted every other option.  It took a few days, but they finally approved.

Because my 3 other children were born 2.5, 3.5 and 5.5 weeks early, the odds of baby #4 being early were pretty good.  With my son spending 10 days in the NICU, and then 2 months on an apnea monitor, I wanted to be sure to do whatever I could do to prevent another premie.

So to be proactive with this pregnancy, my doctor ordered me P17 (progesterone) weekly injections.  Yup, shots.  Every week.  For 18-20 weeks.  In the hip.  Every week.  And the medication is thick.  And it hurts.  Every week.  For the entire week until it’s time for the next one.  Granted, everyone has different pain tolerances, and my new nurse Kate said some patients say one side hurts more than the other.  But it is not pleasant.  However, the alternatives are worse, so I’ll stick with my shots.

Aside from the pain the first few days after the initial injection, I noticed my nausea wasn’t as uncomfortable.  I wasn’t getting sick at the thought of food, so I began to eat more.  Beverages were still a different story, but I was actually able to chew food for the first time since before I found out I was pregnant.  No more over-cooked pasta and mashed potatoes!

I wasn’t really sure if it was the shots or the Diclegis, so I tested it out by skipping the pills.  Bad idea.  The combination of the progesterone, Diclegis, and my Zofran all were working together.  Take anything out of the equation and I’d be asking for it!  So, now I know.

I feel really thirsty though.  I tried to drink, not just sipping like I had be, but properly drink a small glass of water.  Bad idea.  I tried juice, it stayed down, but I felt “swishy.”  From what I’m reading in a few support sites, many moms dealing with HG can’t tolerate plain water…  I wonder why that is…

First For The Kids

14 weeks…

 

Yuppers… welcome to week 4 on the IV!

 

It’s gone from an annoyance to just a part of life.

 

At this point, all our immediate families know… We were timid about it, not really sure how everyone would handle it.  Especially the IV situation.

 

The kids had a day off school, and I happened to schedule my 14 week appointment for that day.  So my husband and I brought the kids with us to hear the baby’s heartbeat.

 

Usually, my doctor is pretty steady with getting their patients in.  I arrived, checked in, gave my urine sample like every visit, and waited.  And waited.  And waited.  It was 90 minutes before I was called in to the examine room.  My weight went up, but it was all water weight from the last 90 minutes of just sitting.  We checked again after a potty break – only a 2 lb increase from my last visit.  Still under my pre-pregnancy weight.  Yay.  😦

 

It was such a great moment for my husband and I to hear that baby’s heartbeat, knowing that baby is ok.  And it was great for our kids to hear it too.  We hadn’t really come right out and told our 5 year old son that I was pregnant, but we’d been prepping him.  After the heartbeat was echoing in the room, we told him.  The most priceless moment was him saying “I want a baby brother.”  It didn’t even seem to bother him that he wasn’t going to be the baby any more.

 

I began to feel movements around 15 weeks.  It was subtle, but as it is the 4th time around, I knew what  to be “looking” for.  I know my kids were eager to feel the baby, and would say that they could feel it, but I wasn’t quite sure that they did.  Either way, they developed a connection to the baby.

Lonely

Week 13…

The only places I’ve gone in the last few weeks have been work and the doctor’s office.

I miss people.

Don’t get me wrong, I love my husband and kids, but I use to go to networking events a few times a month.  I use to go walk around the mall just because.  I use to have nights out with friends.

One week before the PICC line was put in we had a game night with friends from work.  It was nice.  The kids were well-behaved, we got to enjoy some laughs and I didn’t get sick until we got home!  (However the next day wasn’t as kind…)

I haven’t been to church in weeks… my kids really miss it, too.  Steve has been training at his new job, so he hasn’t been able to take them.  Does anyone even notice that we’re not there?

We haven’t made our “Facebook Official” post yet, so I can’t vent publicly.  But I’m so lonely.  Part of me wants to ask my husband to take a day off with me and send the kids with a baby sitter, and just spend the day with me, no responsibilities.  But he needs to work, we need to save up for my maternity leave.

I’ve been invited to a few “direct sales” parties.  But I don’t want to have to bring my stupid backpack with me, and then deal with the fear of getting sick at my friend’s house.

Hormones are a pain, too.  It doesn’t help feeling lonely because of the isolation that the condition forces you into, to then be overly emotional while it’s happening.  Really, does anyone notice that I’ve been hiding?  Does anyone care?

Kids’ last soccer practices… one of the few times I left the house

 

Water Weight & Extreme Fatigue

12 Weeks…

 

We were really hoping to only have the IV for a couple of weeks.

 

After 2 weeks, there was no way Bridget was going to let me off them.  I was still getting sick several times a day.

 

I began to eat one small meal a day, in addition to my Herbalife Monster Cookie Shake at New-Trition for breakfast: Mashed potatoes.  And not even made from russet or yukon golds… no powdered dehydrated mashed potatoes.  Seriously.  And I became kind of ‘brand specific”.  Idahoan, to be specific.  They were the only brand that tasted ‘good’ and would actually stay in my belly.

 

Life with an IV isn’t pleasant.  You have this thing in your arm, all day every day.  And you get this backpack.  It’s not attractive, so you can’t really pass it off as anything but what it is.  And it’s heavy!  The 4L bag weighed about 20 lbs, and after 2 weeks I was decreased to 3L, in hopes I would feel the need to drink more.  The 3L bag weighs about 15 lbs.  And you have to carry it with you wherever you go!

 

 

 

I adjusted my schedule so I changed the IV at night, so it wouldn’t be as heavy during the day.   But here’s the thing about having 3L of fluids pumped in your system everyday: in addition to the trips to the ladies room to get sick, you have to empty your bladder a dozen times a day too.  Imagine getting up at 3AM to go potty, and having to carry a 15 lb backpack with you… seriously.  Try it sometime you have to get up in the middle of the night – carry two 8 lb bowling balls in a bag and then tell me “It’s no big deal.”

 

The fluids helped me make sure the baby was OK, but there was still plenty of fear and doubt that baby was OK.  Then there’s the guilt about taking care of the rest of your family.  I was so sick that I had no strength to do anything.  Making dinner was hard for me to do.  I was thankful for my husband, and the care that he gave me, us.  But there were nights that he’d work late, and I’d be on my own to make dinner.  It was hard.  There were plenty of nights where all they had were PB&J and fruit.

 

I was so thankful for our friend Jenn making us dinner.  Though I wasn’t able to eat it, my kids did.  And there was plenty for dinner the next night, too.  We hadn’t even asked for help, she just went out of her way to help us out.  We are so thankful.

 

One thing that I’d encourage any mom dealing with HG to do, is not be afraid to ask for help, and don’t be embarrassed when it’s offered.  You are growing a person!  And you will occasionally need help.  So if someone offers, accept.

 

IV Drama

11 weeks

I don’t know about you, but I hate blood.

Having 3 kids, I’ve seen my fair share of cuts and scrapes.   But truly seeing your own blood….  ugh.

I just wanted to take a shower… I couldn’t take a shower with my IV backpack, so I had to unhook from the IV.  But I twisted off the wrong part of the catheter on accident, and suddenly there was blood.  It was extremely nauseating.

Thankfully my husband works in the medical field and able to clean my line and help me hook back up.  But I was getting sick while he was helping me clean it up.  So embarrassing.

My nurse was due later that day, she added an extender piece, which the hospital had not added, which is why I was able to twist off the wrong piece.  The extender would be easier for me to unhook for showers, but made to IV’s line really long.  I found myself getting it caught on things, tripping over it.  It wasn’t until a few days later that I learned how to shorten it.

Another issue was priming the bag/tubes.  The pump itself could prime it, but you had to hold the button on the machine for 15 minutes…  then my nurse learned a trick – put it up and prime it manually. HOWEVER… the bag is heavy, and to hook it on to the temporary IV stand was hard to do alone.  And the stand was very wobbly.

If anyone knows an easier way to prime the line, let me know!