The Latest Round and a 2-Year Check-Up

Losing my Mind

Losing my Mind

So, the sleeping saga with Bella continues. Monday morning she was up at 4:45. I was displeased to say the least. Later that afternoon we were going for her 2-year check-up, and I had been hoping to be somewhat well-rested. Oh well.

Bella was a cranky, fussy mess all morning. All we did was butt heads about everything. She went down for her nap around 11am and was up on her own in time to leave for her 2:30 appointment.

Good news – Bella is very healthy. And big. The doctor said she is the size of a 3-year old (30 pounds 3 ounces and 36 inches tall). She was less of a disaster for the appointment (screaming wise), but was obsessed with reaching up on the desk to try to grab the doctor’s tablet.

Bad news – we were Ferbering wrong. Apparently we should have only been going in for 10-15 seconds and just reassuring her that we were there. Then she asked when Bella went to bed and when she got up. Then she said something that put fear in me “It may be that’s all the sleep she needs at night”. She said if that was the case, we should probably take the 4th side of the crib back off, gate her room doorway and let her be able to access her toys in case she’s bored. 8-9 hours of sleep overnight cannot possibly be enough for a 2-year-old.

R and I decided we would try the Ferbering before the crib transformation. And what does Bella do that night? Sleeps all the way through until 5:45am and then snuggled in bed with me for another 45 minutes after that.

But still, another day of butting heads. Bella is climbing on everything and using everything conceivable to help her. You know those boxes you put shapes in? Bella uses hers to get onto her toy chest and access the cubbies on the wall. She just LOVES climbing and my hopes for her playing in her room are beginning to be dashed, because every time she does she winds up climbing or emptying the contents of one of her dresser drawers.

Last night wasn’t fun. She was up at 1:30am and it took 40 minutes of Ferbering to get her back to sleep. She did stay down until just after 6am, but that 40 minutes overnight killed me. My neck hurts so bad I just went straight for the vicodin. Yesterday I managed things with my super cream and the heat wrap, but that’s not gonna work today.

Ugh, I need to end this post, I can hear over the monitor that Bella is up on her toy chest again….

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


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?

Sleep Training Fail

It’s going to be a LONG day…

Bella actually went to sleep without much of a fight at all last night. But I know my daughter, and I knew she was saving the middle-of-the-night waking for when R had to work the next day.

Around 12:30am she woke up and started crying. I let her go for 5 minutes and then went and sat with her for 5 minutes.

Then I let her cry for 10 minutes before going back in and sitting with her for 5 minutes.

After I left her room, I had to take a sumatriptan because I had woken up with a migraine. Meanwhile, Bella cried for 15 minutes and then I went in to sit with her for 5 minutes.

But I didn’t.

I fell asleep and woke up at 3am instead. Crap. Time to go back to my own bed.

When R started getting ready for work, I suggested he close her door to keep from disturbing her. He closed her door as quietly as a church mouse and then went into the bathroom. Bella must have been awake already because she immediately started crying.

I grabbed her and brought her back to bed with me, but she wouldn’t fall back to sleep there (the dogs in my room are too distracting). Then I tried bringing her back to her room and sitting with her, but she still wouldn’t go back to sleep.

So to recap:

  • Bella was up overnight
  • I had a migraine while sleep training
  • I spent too much time in the recliner, which is what I’ve been trying to avoid
  • Bella got up at 5:20am and would NOT go back to sleep
  • And of course, my neck is KILLING me

Oh well, there’s always tomorrow night.

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.

The Road Ahead

The Long & Winding Road?

So I have an appointment with Doc T on Thursday to discuss “things”. Her Chronic Lyme Disease diagnosis had always been somewhat of an abstract and now that I’ve accepted that this is indeed what is afflicting me, I have more questions than answers.

And the FB groups make it even worse. These people with horrible co-infections that are completely debilitated by the disease. I wonder how I can possibly not have these issues when my initial infection was long before almost all of them.

And it’s been a crappy 3 days. Apparently my lack of stress management skills is going to be a HUGE problem. I have been in horrible pain for the past 3 days and Doc T confirmed for me today that it’s probably the stress from Bella not sleeping well.

So, my life in the future is going to be a bit different from what I had imagined it would be, but I don’t know how different yet. Doc T and I will discuss a lot of things on Thursday. Hopefully I’ll come out of our appointment feeling more positive than negative, but at least I’ll have more answers. And more information is always good.