A raging heart

I really need to get back in with a cardiologist. Going off the steroid that is meant to keep sodium stored in me longer has me seeing not only a lot more dizziness, but also a lot of palpitations and while I know it's probably fine, it freaks the crap out of me. It's scary to be laying there in bed and feel your heart pounding in your ears as if you had just finished running a long distance.

I've heard you aren't supposed to be able to feel your heart beat like that until your heart rate is around 130bpm.... that's usually my resting heart rate.

I don't think I'd be quite so jumpy if it weren't for the ICU when the nurses were so freaked out by my heart rate going crazy every time I would shift around in the bed. I wasn't even allowed to brush my teeth because it sent my heart rate into the 160s. 

The Halfway Mark

Now that I'm down to 300mg of Lyrica, which is half of what I have been on for years now, I think it's time to take stock and look at what is happening to my body. I am also completely off the Ativan and the Fludrocortisone (which is a steroid used to keep sodium in the body).

Ativan Effects
-Anxiety much more often and stronger
-Had my first big *panic* attack in a long while (I have plenty of anxiety attacks, but no attacks where I feel like I can't breathe. That has changed.)
-More anxiety attacks from nowhere popping up.

Fludrocortisone Effects:
-More dizziness
-Had a moment where I was having issues with starting to pass out.

And now the big one...

Lyrica Effects:
-Bad nausea in the morning (which is where I've stopped taking the Lyrica completely)
-Neck pain is really bad.
-Having more trouble sleeping (mostly with initially falling asleep).
-More muscle aches all over body. It's really bad when I first wake up.
-Screw body temperature regulation. My body doesn't seem to know what the hell to do with me. Hot, cold, hot, cold, burning, freezing.
-Joints are pretty bad too. Just standing to do makeup was hard on my left knee. :/
-My energy has gone down significantly and it's a chore to get myself moving to do anything, including feeding myself.
-Oh and this damn brain fog. I'll forget what I'm doing within a few minutes and then later realize I didn't even do half of what I need to because I got off track.

Add onto this period cramps, and yeah... I'm just peachy.

At the very least, I guess this did manage to prove I'm not crazy. For a while there I was beginning to get overwhelmed by the constant barrage of how I'll probably feel a lot better being off the meds, and it might not even be symptoms of Fibroymalgia but something much simpler.

So I'm at least a little vindicated.

Though, I will say, I know most of this was said with good intentions and meaning to be supportive and helpful. I just think sometimes people don't really know how to be supportive about it, and they think this is helpful when it usually isn't.

Plan B Formulating...

You should always expect there to be hiccups along the road. So it would seem we've hit the first of our little snags.

One being that my doctor (the rheumatologist) can't do math. Mom said she's met a lot of doctors who can't do math. It doesn't make them a bad doctor, just a bad script writer. So I had to call up to Cleveland Clinic to try and sort it out and get a new prescription because if I use his, then I'll run out of Lyrica completely within a week and a half, and I'm left SOL.

They said yesterday they would get it taken care of and called in to CVS, so we'll see in about a half hour if they succeeded.

The second is these damn migraines. I finally came to the conclusion what I should have done from the beginning: save the migraine medications for last. Go off of everything else, and then go off those, because then it's a much shorter amount of time I might have to deal with the constant headaches.

Oh fertility goddesses, please give me your blessing that in pregnancy I will have no migraines. After everything else I have gone through, that small kindness will be much appreciated. So mote it be.

Ice and Fire

I've run into a bit of a conundrum. In going off of the Ultram, the cramps in my legs and arms have been horrible. In going off a couple of the things needed to help my migraines, I've been having them almost nonstop. So I of course have to start thinking about what will help.

Ice. Ice is great for the migraines. Not so great for the rest of my body. It makes the cramps worse, and I can't regulate my body temperature very well anymore so my whole body gets cold. My feet and hands are unbearable when I have the ice on my body.

And then there is heat. Heat is great for my body. It eases out the cramps, lets my body relax. Sure I get flushed and then need to rest afterward, and to be careful to not pass out. But it's worth it.

Buuuuut... it's horrible for the migraines.

I now have to plan how I do all of this very carefully, and many times I'm left sitting there thinking about how unfair it is, because really, what other methods have been left to my disposal that I can do for myself?

I guess the question really comes down to which pain can I live with better? I just hate that I have to choose.

Pre-conception appointment

So, we saw a doctor yesterday at Maternal Fetal Medicine at the Cleveland Clinic. I went in with my list of medications and made sure we were up to date, and then we started in. So I'm going to make a list and talk about them.

Lyrica - 300mg - 2 times a day - Fibromyalgia

• Personal decision; she has worked with patients who stayed on their Lyrica throughout the pregnancy.
• Best if I am off it for the first trimester and then if I am really not handling well, then she can start weaning me back on in the second trimester.
• This made me feel so much better about all of this!!!

Fludrocortisone (steroid) - 0.1mg - 2 in the morning - Tachycardia (POTS)

• She said to stay away from all steroids.
• This can cause cleft palette if taken during pregnancy.

Amerge - 2.5 mg - 1 as needed - Migraines

• Go off of
• Can cause high blood pressure
• Can make the babies really small

Diclofenac - 50mg - 1 to 2 as needed - Migraines

• Go off of
• This can cause issues with the kidneys in the baby
• Can also cause the pre-mature closure of a blood vessel in the baby's heart that it needs.

Vistaril - 4mg - 1 by mouth up to 3 times a day as needed - Anxiety

• This is okay to be on since it's really just a hyped up version of Benedryl, but this can't be taken with unisom.

Tramadol - 50mg - once a day - Fibromyalgia

• Must go off of.
• Babies can be born with a tolerance and go through withdrawl.

Vitamin D - 2000iu - once a day - Vitamin D deficiency

• Fine as long as the levels don't get too high.

Ativan - 0.5mg - 4 times a day - Anxiety

• Go off of
• Can cause dependency in baby
• Can also cause cleft palette

Ambien - 10mg - 1 at bedtime - Insomnia

• Personal choice. Might be better to try and use a lower dose.

Trazodone - 50mg - 2 at bedtime - Insomnia

• Not well studied, but she said if it was absolutely necessary for me, then I should use it.

Ginko Biloba - 120mg - once a day - Depression

• Don't take.

Tylenol - 325mg - 2 as needed (no more than 8 a day) - Pain/Fibromyalgia

• Perfectly fine!

Cymbalta - 60mg - 2 in morning - Depression/Fibromyalgia

• Personal choice; I have to look at the cost vs. the benefit of it.
• Very low risk of hole in heart (0.5%)

Fibercon - 2 pills a day - Irritable Bowel (IBS)

• Perfectly fine.

CO-Q-10 - 100mg - 2 a day -Migraines

• Go off.

Magnesium - 250mg - 1 a day - Migraines

• Perfectly fine

B2 - 100mg - 2 times a day - Migraines

• My migraine doctor said to go off of it, but this doctor said it should be fine. It's water soluble and will mostly go out with the urine. 

Prenatal Vitamin - 1 a day - Nutrition/Fibromyalgia

• Very good!!!

B12 - 1000mg - once a day - B12 deficiency

• This is fine, but she wanted to get my levels checked so she ordered a blood test for that. As long as the levels are normal, then continue to use.

Bentyl - 10mg - 1 capsule up to 3 times a day as needed - IBS

• Probably shouldn't take.

Petadolex - 75mg - 2 a day - Migraines

• Go off of.

Docusate Sodium (Colace) - 100mg - 1 a day - IBS/Constipation

• Very good! In fact, it might be wise to take a little more or something slightly stronger in pregnancy to help keep the bowels moving.

Albuterol HFA (inhaler) - 2 puffs as needed - Asthma

• Perfectly fine.

She said that she doesn't feel it's fair to ask a woman to go off of ALL of her medications, especially when I have so many depression issues. In the end she made me feel a lot better about all of it. I feel like I can do this!

Asher asked about his ADHD. She said there's a 50% chance of a son ending up with it, 25% for a girl. We'll just have to wait and see. 

But she thought it was very smart that we wanted to come in before we got pregnant to go over all of this and to start getting off of it.

Next week, I see my rheumatologist and I will ask for the doses of Lyrica to start going off of it. I will post more then!

Pros and cons

So, as per usual I haven't talked a lot about what is going on right now, so before we go into tomorrow, I just wanted to say thatAsh and I are going to be trying to conceive soon.

Tomorrow we go to Maternal Fetal Medicine at Cleveland Clinic for a pre-conception appointment. Basically what that is is a high risk pregnancy office where they specialize in pregnancies with moms taking certain medications, with certain issues and illnesses, and so on.

The hope is that they will tell us exactly what medications I would have to go off of, what medications we can use in their place, and what we can do to try and make this as good of a pregnancy as possible despite all of my health issues.

It's terrifying, to be honest. I want children, but I also feel that it's possible that this time I just won't have the strength for it. It's very possible we'll go in tomorrow and they will say that they don't think I'll be able to do it. Or a month in to going off the meds, it will be so bad that I won't be able to function or get out of bed.

I don't know yet. But we're taking that first step.

Suicide is Expensive

So, I thought I would share how much my Emergency Room/ICU/IV Fluids/Labs all together cost $41,543.50.

This doesn't even include the psych ward stay. That was somewhere from $8-$15k.

And for the first time since I got this insurance: it's not on us to pay any of it.

Thank the gods.