The Saga Continues

Bella is Still the Undefeated Champ in the Sleep Wars

Thursday night Bella was up at 11:45pm and we fought with her for an hour and a half to get her to go back to sleep before giving up and bringing her to our bed. She was hyper and didn’t really calm down and fall asleep until 2am, but then slept until 7am.

Friday night is a haze, I think she was up around 1:30 and I had to bring her to bed, but she wouldn’t calm down. So 30 minutes later I put her back in her crib and she did fall back to sleep. Then around 4am she started acting up again and R brought her back to our bed and she stayed there until she got up around 7am.

Saturday was Bella’s 2nd birthday and my in-laws visited, including my niece (coming up on 7) and nephew (almost 3). They ran around like lunatics for almost the entire time (noon – 7pm). No one took naps and I figured, if Bella was going to sleep well any night, it would be last night.

Hah! 9:30. No, she didn’t sleep in until 9:30am. Oh no, my daughter was up at 9:30pm on Saturday night screaming her head off after the most hectic, tiring day she’s had in a very long time. R just grabbed her and brought her to our bed, where she slept well and we slept horribly.

She just fell asleep on R around 8:45am and I just put her back in her crib.

I think I have one option left. Bella likes to kick her covers off (at least when she’s in bed with us). If she’s doing this in her crib, the jammies she’s wearing probably aren’t warm enough for her. So I may run out and get 1 pair of fleecy, footy jammies for her to wear tonight and see if it helps.

On a happier note, although I did have neck pain yesterday, I was able to avoid taking any narcotics. I can’t say the same for the day before that.

If getting a decent night’s sleep is an integral part of recovering from a Chronic Lyme Disease flare, I am SO screwed.

Another side note: Bella does not appear to like chocolate mousse cake and is still not quite sure of how the whole “opening presents” thing works. (Her cousin was actually upset he couldn’t open any. Last year I had goodie bags for them and my brother’s son, but finances wouldn’t allow for that this year). But she got some very cute clothes and some neat toys, and I’m sure she will enjoy them all.

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Day 3 of Bella’s Sleep Deprivation Experiment

Her Diabolical Plan is Working

Every night I try to be hopeful. I try to be positive. Maybe Bella will actually sleep well tonight. Maybe *I* can then sleep well. But alas, it is not to be.

4:30am Tuesday. 3:40am Wednesday. 4:15am Thursday. Up for the DAY.

I am a sleeper, I love sleep. I also need sleep, so I can fight the stupid spirochetes in my body. I need sleep, so I can reduce the stress that makes them act up even worse.

But Bella disagrees. She had to wait until my parents went away for 5 weeks. She’s really devious that way.

I’ve tried calming her. I’ve tried letting her cry. I’ve tried bringing her into my bed. I’ve tried lying on the floor in her room. I’ve tried putting her to bed a little earlier. I’ve tried putting her to bed a little later. I’m out of ideas.

I have now become zombie-mommy. I’m awake, but not really. And the pain is getting worse each night this happens.

And to top it all off, she’s emotional all day long. Lovey or demanding. Crying or giggling. Changing from moment to moment. I refuse to just give her what she wants to quiet her down.

Some day I will look back on this and laugh. But I don’t think that’s going to be for a VERY long time.

All By Myself

Yesterday I took my parents to the airport so they could fly out to take a 5 week cruise around the orient. I’m really glad they’re going on this trip, it should be amazing.

But I’m a little anxious too. When I’ve felt horrible or overwhelmed in the past, I could always get a Mommy break by dropping Bella off with my folks. I won’t have that option for the next 5 weeks.

In all honesty, I only REALLY have 3 days on my own since the hubby teleworks on Wednesday and is off on Friday, Saturday and Sunday. But I worry. I’ve joined a lot of Lyme groups lately and have started hearing a lot of horror stories. People having horrible flare-ups, even during treatment.

What am I going to do if I have a flare-up and the only way I can “function” is to take Vicodin every 6 hours? I don’t get loopy on Vicodin, but I do get sleepy. This means a lot of time letting Bella watch TV instead of interacting with her or taking her places. And that will suck.

So, I’m keeping my fingers crossed that I have a good 5 weeks. The new version of the Uber Cream that Doc T prescribed arrived and seems to help a bit more. The heat wrap is an option as well. Vicodin is my last resort.

Bella is finally no longer sick, but she’s not going to sleep or getting herself back to sleep very well, which means bad nights. If I have to, I’ll just nap every day when she does. What other choice do I have?

My Life as Seen Through my Pharmacist’s Eyes

all of it

The entirety of my current medication regimen

Chronic Lyme Antibiotics

My Current Chronic Lyme Disease Antibiotic Regimen

just say no to yeast

Antibiotics = Yeast Infections. My attempts to prevent them during long-term antibiotic use.

Standard Meds

2 Antidepressants I hope to quit when I no longer have chronic pain, Singulair for allergies, Crestor for Cholesterol and birth control pills because I can barely handle Bella as it is

vitamins

I still need a few more supplements because of the Lyme, but these are the basics

Pain Relief

My “Super” Cream, Hydrocodone, Oxycodone, Klonopin (because anxiety is fun!) and my trusty Sumatriptan

A Week's Worth

I’m Only 37-Years-Old and I Take All this Crap Every Day. WTF?

A Busy Day and a Frustrating Night (UPDATED)

I was out of the house most of the day yesterday. My Mom and I drove back to where we used to live on the Jersey Shore so I could have an appointment to discuss things with Doc T and my Mom could see her eye doctor about her new glasses. After these appointments, we unfortunately had to go to the hospital to visit a family member who had suffered a stroke on Tuesday. After that we stopped by to visit Stace and her hubby for a little while before heading home.

R decided in the morning that he was going to stay home yesterday and watch Bella. My Dad was going to do it for us, but R decided he wanted to spend the day with her. They apparently had a lot of fun.

Mom and I left a little early and drove up to see if we could maybe find somewhere to eat along the ocean, but didn’t have any luck. But we drove around Ocean Grove and Asbury Park and even stopped so Mom could get out and walk to the beach and at least touch the sand with her hand for the first and probably last time this year. We never took advantage of the beach often enough when we lived closer and now we’re an hour away. Oh well.

We decided to just go to a diner closer to our appointments that my folks frequently go to when they’re in the area. It was a leisurely, relaxing and yummy lunch. Then we walked around a store called Harmon for a little while and I brought Mom to her appointment and dropped her off.

I still had 30 minutes until my appointment with Doc T, so I decided to drive by the old house where I grew up. It was a little sad. The new owner definitely does not maintain the property to the standards my Dad did, there were even garbage bags of who-knows-what on the front porch. The lawn needed a mowing and the whole thing just looked a little sad. All the time my folks put into that house over 30 years is being squandered. 😦

I decided to do something happy after that and stopped by a local florist to pick up a rose for Doc T since it also happened to be her birthday. Then I drove off to my appointment and waited to see the birthday girl.

It’s nice to start off your doctor’s appointments with a hug. We had never really had an in-depth conversation about the Chronic Lyme after the 2nd round of blood work confirmed it. I had a list of questions which she patiently went through with me.

She asked about the super cream and I will apparently be getting another batch which is stronger and rubs in better (I’m a guinea pig for this stuff apparently).

We talked about the intense neck pain that she had hoped would have subsided by now, but she admitted it might take until the end of 6 months of antibiotics until the pain is manageable.

She was very happy that besides the previous 2 days (which I think were hormonally related), I hadn’t really had any migraines since starting the antibiotics. The Tuesday migraine was easily treated with sumatriptan. The Wednesday migraine took 2 sumatriptan, 2 hydrocodone and an oxycodone and lasted 12 hours.

Doc T had been slightly concerned about my narcotic usage. She knew I had been using a lot when I first started the antibiotics and had a horrible flare-up (which she was fine with and was to be expected), but she thought I might still be taking a lot of meds and was very relieved to hear I usually took 1 a day around bedtime and relied on the super cream and my heat wrap the rest of the time.

We talked about the next plan of action which is more blood tests at the 6 week mark. Depending on how the results come out, I will either keep going with what I’m currently taking, or we may have to add some additional antibiotics to the mix.

Doc T wrote up a list of supplements she wants me to start taking and let me know a few I could stop because they no longer served their purpose (my cholesterol requires medication to control at this point, so no more red yeast rice). FYI – activated charcoal and essential glutathione with alka seltzer gold during flares and ALA liver and milk thistle for detoxing.

She also asked me to do some homework on Byron White Protocol and Cat’s Claw. Homework. <sigh> Actually, she’s really excited that she’s going to the ILADS conference in Boston this fall and hoping to learn a lot herself.

We’re keeping me on my depression meds since I’m still in chronic pain and I won’t be “stepping down” the wellbutrin any more than I have already (to 300mg/day).

I’ll go back to see her in the beginning of October and get my blood drawn to see how those little spirochetes are doing.

While I was there, she came up with the idea to see if their massage therapist was around and available and she was. She offered me an hour session, but I really wanted to get Mom and get to the hospital so I settled for a 15 minute “quickie”. I haven’t had a professional touch my shoulders or neck in such a long time… ahhhhhhhh.

Doc T and I said our goodbyes (about 90 minutes after my appointment has started) and I went to go pick up Mom. Then we drove down to Jersey Shore Medical Center.

I’ve never seen someone who has just suffered a stroke before. All I’ve seen are people who had them years ago and compensate as much as they can and live their life. But this wasn’t good. And the worst part is, she knew it. She has all her mental faculties, but half her body is paralyzed. This is a woman who would be considered old by most people’s standards, but who is exceptionally active and was in fantastic shape. I will admit that I never felt as close to this relative as my Mom probably would have liked (through no fault of her own, mostly just the age difference). But seeing her laying there, fully aware of what was going on and what the prognosis would most likely be…. it broke my heart. I felt more love and empathy for her during that short visit than I had in my entire life.

On our way out we ran into her daughter and husband. Again, I have had some problems connecting with this man at previous times in my life, but I could see how difficult it was for him to see the woman he loved and has been married to for over 55 years in the condition she was in. For the first time in my life I gave him more than the perfunctory hugs you give after a holiday gathering.

My Mom and I had hoped to have lunch with Stace earlier, but we didn’t make it to the area in time. I had sent a text asking if we could stop by after the hospital since it was less than 5 minutes from her house. And we planned to go and have a quick visit before heading home.

By the time we got there, Stace and her hubby had just ordered some pizza and my Mom and I each had a slice while we played catch up and tried to talk about things other than the visit we just had. Stace is a wonderful distraction and my Mom truly loves her like a daughter.

Will you PLEASE just go to sleep? I’m begging you!

While we were there, I had been texting R and apparently he was having a rough time getting Bella to bed. It started with screaming in the crib and then wound up with him having to put her in his lap while he watched the Phillies game. Sometimes that’s the only way we can get her into bed, to fall hard asleep on R and then move her.

Mom and I headed home and I dropped her at her place. Before I left, I texted R to let him know I was on my way so he could put Bella in bed and/or throw the dogs outside for when I got home. He texted back that BELLA WAS STILL AWAKE. This was almost 10pm!!

As soon as I got home, I did what I needed to and went right to bed. I hoped that if Bella saw me go to bed, maybe she’d consider it herself (haha). I woke around midnight and R was in bed, so at some point he got Bella into her crib. Then at some point in the early morning, she began crying. R went to check on her and came back to bed with Bella in tow. I decided I was going to sleep in the guest room.

Bella needs to sleep in her own room, in her crib. That means that no matter how many times she gets out, we need to put her right back in. It’s a crappy few nights, but the alternative isn’t working. We have 3 nights a week we can do this when R doesn’t have to work the next day. He just blew one of them last night. I know he loves his daughter and hates to hear her scream and likes to quiet her down as soon as possible, but he’s doing more damage than good at this point. And I’m the one who usually winds up paying for it.

Bella was wide awake just after 5am and by 6am I got up and got her milk and some coffee for me. Of course my neck started hurting right away so I have some of the super cream on. I’m hoping for a better day today. Mom is having a procedure she hopes will help with some intense pain problems she’s been having, so we probably won’t see her or my Dad today.

 

UPDATE: R read my post and corrected me about his attempts to get Bella into bed. Apparently there were 3-4 main attempts made after her bath with 10 minutes of crying each followed by 5 minutes of him trying to calm her in the crib. Also, he tried to transfer her to the crib from being asleep in his lap 3 different times, all of which failed. But tonight we need to be Bad Cop – Bad Cop if we’re ever going to get decent sleep again.