Lyme Journey - 8 weeks into treatment

 The last time I wrote I was 2 weeks into treatment. Now I am two months in. The first two weeks were pretty brutal and I worried if I would be able to continue to work. However, the titration of the medication stabilized so I have been able to live with the current symptoms. The medication changes in 2 weeks so I am a little nervous about what side effects will happen then. I take it 4 times a day so it is a lot to remember, but I can see signs that it is helping.

I knew nothing about Lyme Disease when I started this journey except that it was caused by being bitten by a tick and some people have "terrible" symptoms and cannot find relief. I did not know what the symptoms even were. I have spent as much time as I can since then trying to understand my symptoms and have discovered that I have probably had this for a long time. 

The research talks about 3 stages of the acute progression of Lyme. Then there is a chronic form since Lyme never actually goes away. That is what I have. Unfortunately, since I did not know what Lyme Disease was, I have assumed that the symptoms that have been the worst for me have been due to other problems. I have been so thankful for others who have spoke out about their experience as it has provided me with the validation of my symptoms that I am not making this out to be worse than it really is.

Specifically, I thought the chronic pain I am dealing with is due to a herniated disk that was diagnosed 11 years ago. Sometime in the past two years the pain got so back that I started seeing a new chiropractor who I knew performed Dry Needling as I was desperate for pain relief. After our initially assessment he informed me that my pain was not due to the herniated disk so they Dry Needling would not benefit me. That took me aback as I have been treating the pain for the past decade as if it was that. It wasn't until the Lyme diagnosis that I realize that the chronic pain is due to the nerve damage caused by the bacteria that causes Lyme Disease. I have now been started on B12 injections weekly in an attempt to improve the pain and stop, if not reduce the damage being caused. The pain is primarily in my back although it is also in the joints of my hands and feet, and in my neck and shoulders. I have to wear my tennis shoes constantly as I cannot stand the pain of going bare foot, and can only wear my tennis shoes with my custom orthotics and not sandals (thankfully I am not a person who likes pretty shoes and am willing to wear tennis shoes with skirts for work lol!). 

If I think of pain on a scale of 0-10 with 10 being the pain of childbirth (writhing and screaming incoherently:) and 7 being the stage when I would start to tear up due to the pain, for a long time I was at a 2/3 most of the time with some flare ups. I am now riding probably a 4/5 most of the time with flares at the 6/7 mark. 

Another symptom that I misattributed for 3 years were the hot flashes. I am a woman at the age when hot flashes are the norm. Why would I think it was something else? Three hot flashes an hour 24/7 bad enough to leave me dripping in sweat each time? I thought it was excessive but thought I just had to live with it. My PCP put me on hormones and thyroid medication which did help some, but now we know that the hot flashes are due to the damage to my nervous system. You know when you are startled and your body goes into "fight/flight" mode? You get lightheaded, dizzy, nauseated, and break out in a sweat when somethings scares you? Well, my nervous system does that frequently when it feels heat, anxiety, or pain. Being as that I am in chronic pain? My nervous system triggers often. Going from sitting to standing. Shifting while sitting. Standing still too long (like during worship in church or just talking with people). Bending over. Rolling over in bed. I wake up every 1-2 hours at night drenched in sweat. I have to have a fan blowing on me all night long just to keep me as cool as possible so I can get as much sleep as I do get. I dread that it is getting in the 40's at night now and we will have to turn the furnace on soon. My family is having to live with a very cold house and I wear shorts and a tank top at home just to keep my body as cool as I can. Anything warm will cause a hot flash too - so my family has learned to quit asking for hugs or touch as skin on skin is too warm. 

The Thursday before Labor Day I got a terrible migraine that lasted 4 days. The meds I have been on for the past 2 years have helped them tremendously so I was surprised that I got it and couldn't get rid of it despite using the usual tricks. Then the pain racheted up to the point where I had to quit my walks with my husband and my daily runs. We were set to go to the State Fair but the pain was so bad that I had to forgo attending. That is the first time I have not done something because of a migraine - and I have been having them for 25 years. I had been running on a trampoline 5 miles in under an hour 5-7 days a week. I had to quit for several weeks due to the pain and now my pain/endurance is such that I can only make it just over 2 miles in 30 minutes and have to quit. I can do some of the 2 mile walks with my husband like we are used to, but they are maybe once a week now and sometimes I have to cut them short. 

So, because of this I have been started on B12 injections. We are hoping for a good outcome. I should find out later this week when IV treatments will start. Another factor in here is that I have MTHFR. I had never heard of that but my PCP tested me for it - it is a DNA level problem. It essentially means that I cannot utilize B12 or folate and must take the methyl form. I initially took the regular form and it really made a noticeable difference when I took the methyl form. (as an aside, apparently if a woman has MTHFR she cannot absorb regular folate so she advised me that my daughters who have MTHFR should take methyl folate before/during pregnancies to assist in those being healthy pregnancies).

I am thankful that I can still work. I am thankful that I have a husband and family who are so incredibly supportive and understanding - they don't tell me to get over it or try to convince me it isn't that bad. My husband has taken on even more responsibilities and steps in to stop me when I try to do something that will likely make the pain worse, or tells me to sit down and rest or go take a nap. He is such an incredible man. I am so blessed to have him by my side. I am thankful for the relief that I have gotten from being dairy and gluten free - that has really made a difference for the symptoms that was causing. I am thankful that I am discovering more foods that I can eat that are safe for me and don't taste terrible:) I am thankful that God in His sovereignty led me to my PCP who was willing to keep digging until she discovered the problem. I am thankful for her taking the time to hear me and seek solutions for the pain. Since this has started I hear horror stories of people currently diagnosed with Lyme Disease who asked PCP's to run the test and were refused (being told Lyme Disease doesn't exist around here) so they had to go elsewhere to get the diagnosis so that they can get the proper treatment. Finally, I am thankful that, despite how hard it is to work so much right now, I have the finances to pay for all of this as none of it is covered by insurance. I know that is a blessing that not everyone has. 

God had a plan. He has this. He knew about it before it started and knows what the process and outcome will be. I keep praying for wisdom so I know how to proceed and then I seek to patiently trust Him for the outcome:)

Lyme Journey - Week 3

Three weeks ago I was given the diagnosis of Lyme Disease starting yet another journey of a steep learning curve and navigating "new." 

The first week I was pretty much in shock and disbelief. I had to figure out if I trusted the diagnosis (it was determined by blood work so I guess there isn't any second guessing about that) but also if I could trust the treatment. I don't know much about Lyme Disease at all except that some people are so comprehensively affected that they are unable to function well at all. Obviously I am still able to function. 

Once I came to terms with the diagnosis I had to think through what treatment to try. There are SOOOO many opinions about treatment for Lyme Disease. SO MANY. After researching some of them I decided to just continue to trust my Functional Medicine doctor and go with what she recommended. I started treatment two weeks ago and it has been a learning curve. I tend to straddle the line between traditional medicine and a more holistic approach - or what is called Integrative Medicine and that is the type of intervention I chose. 

The treatment that I have started is called the Cowden Protocol. I am two weeks in and will be taking the supplements/tinctures 4 times a day until I feel "better" for 2 consecutive months. Right now I pretty much tire really easy and have other side effects (that tell me it is working) and have noticed some positive effects already (like less chronic pain in some areas of my body). Depending on how I tolerate this she expects to add some IV treatments in as well. 

There are other lifestyle changes I have had to make as well, one being cutting down my workload. Despite me saying for awhile that I can't figure out a way to cut down, I have been able to do it pretty quickly once she told me I had to. I am still working more than I was 2 years ago but less than the past two years so it is a good compromise and I think I can sustain this pace. The day I am not working will mostly be taken up with medical appointments so I can't work anyway. 

The other biggest change is that I have to go gluten and dairy free. I have been told this for the past 18 months but didn't have the energy to figure out how to make this huge shift. I have been  about 90% dairy free and 50% gluten free... but now I have to be strict about it. To be completely honest almost all food makes me sick right now and I feel noticeably sick if I eat food with gluten so it hasn't been too hard to give up. 

I have 2 friends who have been telling me about their journeys to go dairy and gluten free so I called them up and asked a bunch of questions. The first person is this brilliant woman who is very science minded so can figure out how to change out recipes to make them healthy. I am not like that so am happily claiming her recipes for myself (she made me some amazing GF/DF peanut butter cups that were the first sweets I have had in two weeks. SO THANKFUL lol!)

The other friend discovered a company called Epicure that has all gluten free foods/meals and many are also dairy free. That is much more my style so I don't have figure out how to reinvent the wheel lol! I have signed up for that company and look forward to being able to expand my diet from protein shakes and rice/peas/chicken to --- more :) 

If you are interested in finding out more about Epicure let me know. I can direct you to my friend:) Also, I will be hosting a 20 minute informational FB "class" on Epicure next week if anyone is interested in easy GF/DF foods and not sure where to start or would like more options:)

The First Month of Grace Being Home - and other news

 Grace has been home a month:) For the most part it has gone well. With her having been gone for 21 months the transition back home has gone well in a lot of ways. She is working to prove herself and her efforts appear sincere. We are hesitant - mostly because Faith had told us she had made authentic change and obviously had not - but fundamentally she is very different than she was before. 

The biggest change is that she appears to be genuinely saved. She had said she was many times before, but she now bears fruit that is consistent. She has been teachable instead of rebellious. Is it perfect? No way. But no situation is:) The real test will be when she starts school in 12 days. School is extremely stressful for her. She left in Middle School and is coming back in High School so the stress will be greater. Her ADHD will always be with her so that affects her learning in significant ways.

Add to that that she is having bunion surgery in 2 days. Yes, bunion surgery. I thought that was something older people dealt with but apparently it is a genetic condition. So, she gets to start school with a surgical boot and metal pin sticking out of her foot holding in place the toe that will be broken and moved. Sounds gross doesn't it.

Prayers for her surgery, healing, and transitioning to school are very greatly appreciated. 

***

I have talked before about how the past 15 years have been a significant struggle in raising kids from trauma. It has affected my health and my friendships in negative ways. I have been seeking answers for health issues for the past 21 months since Grace left and I actually had time to put into my own health. I had first been diagnosed with Epstein-Barr. That treatment dramatically reduced the frequency of the migraines that I had been experiencing of at least 20 days a month most months of the year for 20 years. However, I was also having other symptoms that suggested that more was going on. I had an ANA Cascade (auto immune disorder test) that thankfully came back negative. But then I had a vector-borne test and discovered that I tested positive for Lyme Disease. I have been reeling a bit since I got that news. Especially since my idea of being outside - other than hikes- is to have the windows open (lol!) so how did I get it?  On the one hand it is very validating to know that there is a legitimate reason that I feel the way I do. On the other hand, well, I have Lyme Disease. So now treatment begins. There must be 100 different opinions on how to treat Lyme. I am moving forward with one of those and have been researching it a lot. I guess time will tell if the treatment makes a difference. Part of the treatment is to completely revamp my exercise routine (I started Yoga today...) and I am completely dairy and gluten free, low sugar, low sodium, etc. While that sounds daunting the reality is that for a long time all food I eat makes me feel sick so I actually feel better when I don't eat anyway. I have lost 7 lbs this month. I guess it is a good diet plan;) Silver linings are important!

But that also means that I don't have the energy or mental capacity to put into friendships. Again. There was a time a month ago that I had a terrible day and I just sat in my car and wished I had a friend - just one - that I could call and vent to. I have friends - but I have not been able to nurture those friendships over the years that I could call one on a whim and just vent. Usually my husband gets to be the one who hears all of my venting and ranting lol!!! He is such a saint to put up with me;) I ended up calling my brother who was thankfully willing to take my call and placate me. He is a good man. I am thankful for him (not just for listening to me vent:) ).

Today's sermon in church was about the importance of friendships in the body of Christ. I agree that they are very important. In my job I give out that advice all of the time. But when one is exhausted, in chronic pain, and just trying to get the next thing done it is hard to facilitate those friendships. I give 100% of my energy to my job and my family - and my family often gets left overs. I am hoping that this treatment will give me back some of that vitality that I would like to have. But they tell me I will feel worse before I feel better. As much as I love being self-employed, right now I wish I had a job that offered the option of FMLA so I could take a 3 month break and get healed. But, I can't so I will just keep putting one foot in front of the other and trust each of those steps to God while praying that He grants me healing:)

Bittersweet Birthday:(

When Faith petitioned to come home from the residential program in December she agreed to 3 behaviors that "if you do those you will go right back." She, unfortunately, chose to engage in 2 of them - repeatedly. 

So, Monday we readmitted her back to the program. Today is her 15th birthday. We celebrated last week to be sure we sent her off knowing she was loved and important to us. She spent her 14th birthday there too and we had wanted to make this birthday special. Given the way the program works she will in all probability spend her 16th birthday there too...

That makes me so sad. It makes me sad she knows what she needs to do. She can say what she needs to do. She can do what she needs to do when she is closely monitored and watched.

But she does not want to do the things she needs to do.

I have realized that I want her success more than she wants her success. I want her here more than she wants to be here. I want her a part of us more than she wants to be a part of us. 

And I cannot want someone into making change. So, we made the hard decision, again, and here we are, again, on her birthday praying that she would submit to authority, to God, and to be willing to "look in the mirror" and see her own areas she needs to change instead of insisting that it is everyone else's fault. 

Prayers for her salvation and convicted heart change are appreciated...

I am disappointed but not crushed like last time we sent her. I am learning to accept that I cannot move pieces on the chess board so to speak to get her to have a heart change. It is between her and God. Last night we had a phone call with her and all she did the whole call was complain about how other people were not doing what they should be doing. When we challenged her role in similar choices she just refused to talk to us. She is where she needs to be. We are trusting God with her future:)

The Surprising Way Grandparenting Has Made Me Sad

 I adore my grandchildren. They are 1 and 3 and full of life and energy. They speak up when they want something, they listen when they are asked to do something (eh, as much as toddlers do - just ask my daughter about catching them in the Easter candy this week lol!) and they sleep through the night most of the time. They smile. They laugh. They joke. They run up to people they know/love and ask to be held, heard, and seen. My daughter and son-in-law are total rock stars at parenting and that is evident in how our grandchildren act and respond.

They feel safe.

SAFE.

They are also essentially the same age that Superman and Faith were when they came to us. Sometimes when I see them, especially two weeks ago when we had them for 4 days and in January when we had them for a week, I am overwelled with how HAPPY they are...and how Superman and Faith were totally different when they were that age. I get sad when I think about how they were (and often still are). And then I get angry for how they (and countless others) were/are raised. 

Our kids came to our home the month they turned 2 and 3. They had already been in the foster care system since the day that Faith was born.  That is too many "caregivers." That is a long time to learn how the dynamics of caregiver to child works. Do not dismiss that if kids can't remember it it won't matter. Not true. At all. My kids learned how to "communicate" amongst caregivers/adults - "be silent, don't engage, don't be seen."

When our kids came they didn't talk. They could. Superman had excellent enunciation and vocabulary. But they didn't. Superman would sit, just sit, in a corner or on the kid picnic table we had in the living room and just watch. We actually had to take the picnic table outside so he would do more than just sit there. Then he just sat in the corner. 

They didn't feel safe. Think about what it would be like to live your whole life in settings where you didn't feel safe to speak, move, ask for needs, or even be seen. 

Now fast forward to them as teenagers. Once learned that talking is unsafe, it is very difficult to unlearn that you can now appropriately use your words to get your needs met. In fact, it is typically learned and ingrained by 12 months. Just think about that. Children learn how safe they are to speak to others by twelve months. They aren't even verbal yet. Just using crying, laughter, smiles, mimicking, etc to communicate.

If people don't feel safe using their words they will still communicate - it will just come out with behavior. Either avoidant or aggressive or passive aggressive behavior - but their wants and needs will still be communicated.  

So what does this look like 12 years after they have been removed from the dysfunction and been taught it is safe to speak? In a nutshell - slightly better with really intentional prompting and encouragement, but it is still not at healthy levels. They know how to "read" people extremely well. One knows how to use laughter and jokes to lighten any level of tension that is "read" but rarely can give an actual solid opinion about individual wants. The other knows how to operate behind the scenes (passive-aggressive) to get wants met while maintaining a different image on the surface and even more rarely will use actual words to get a need met.

What we do as parents is watched by our kids. They are trying to figure out if they can trust us. Trust is made up of two parts 1) do the kids feel SAFE (that they are physically safe, won't be embarrassed, belittled, disbelieved, dismissed, or humiliated if they speak. AND not that you tell them they are safe but they actually  feel safe) and 2) do the kids feel HEARD (not that you have to agree with them all of the time, but they have your attention non-verbally and that you respond verbally that you clearly have heard what exactly they are needing/wanting. How many times have you talked to someone and they think they are hearing what you are saying but you feel they have not? How do you feel about that?

Across this world we live in this is happening every day to the vast majority of children. Those children are/have grown into adults. Is it any wonder why marriages are falling apart and people groups are hating each other? Now I am getting beyond the scope of my thoughts today. 

Caregivers should hear  their children. They should not:

be verbally or physically abusive to them or in front of them

they should not, through words or actions, communicate to them that they cannot speak up

they should not strap young children into highchairs/carseats/lock in rooms to make their own lives easier and then be relieved when the child eventually stops protesting/crying in those settings. All they did was teach the child that they cannot speak their needs. The child did not actually learn "oh, the caregiver knows what is best for me and I will happily go along with whatever they think is best." 

they should not have children sleep in bug infested blankets on the ground and not have a bed.

they should not starve children.

they should not drag their children into their own chaotic and dysfunctional situations.

they should not use drugs around their children. They should not use drugs at all.

In my work I see the teenage and adult effects of these issues daily. Parents - there are fewer concepts that you could teach your children that are more important than the importance of appropriately using your words to get your needs met. Not verbal abuse. Not physical abuse. Not passive-aggressive posturing. Not shooting people. Not intimating people. But using. your. words.

If you don't feel safe talking to someone, ask yourself, "why?"

If someone doesn't feel safe talking to you... please as yourself the same question. 

Today I get to watch my grandkids again. I will delight in their laughter and loud joy. I will delight in their getting in my face when I am talking to someone else (I will gently remind them to not interrupt but will get right back to them), I will delight in them asking me to make cookies and watch tractors and listen to Baby Shark. Because I will know they are not afraid. They feel safe to express any wants they have. But a part of my heart will break knowing three of my kids never had this when they were young and they are living long-term impact of that on a daily basis. Then I will once again pray. Reminding myself that Jesus knows all, He is not surprised by anything in their lives, and that He has a perfect plan for them even with all of their (and my) baggage. I will ask Him once again to heal their hearts and minds so they know they are safe - if not in the world, then with Him.

**for the record -my kids have read this post and know I have written this about them. They said that they agree with what is written and they feel safe in our home now:)

Living to Work? or Working to Live?

 My dad used to tell me about a car mechanic he knew that worked on everyone else's cars yet his was broken down. He shared that people tend to not perform the best in their own lives in the areas that they give others advice. 

Well, I am proof of that. I teach people about self-care and boundaries and work/life balance and I am terrible at it. There are a lot of reasons, as I sit an analyze it, why I insist on working so much and don't take intentional time for my family and myself. All of those reasons are logical reasons. But, they not good enough.

At Christmas I took off a week from work - and honestly, the only reason I took it off completely was because Grace was coming home for that week. It was the first week I had taken off in 2020. Then the next week I worked two days and took 5 days off. It was so rejuvenating that I decided that I would make myself take time off once a quarter. I now have lots of ideas of places we can go this year as a family for fun. I will try to keep my resolution to this this year:) We just got a letter that Grace will be home on family leave for over a week the end of May. I am hoping for a fun trip with her and the family that week:)

But, the first quarter? I decided to throw caution to the wind and take a 10 day vacation to the beach. Where it is hot. To just sit and relax and walk in the waves. And enjoy my family.

I refuse to feel guilty about it. I have learned that a big reason I don't take vacations is because of guilt. Actually, I have learned that I feel guilty about a lot of things that are illogical. So, regardless of Covid. Regardless that not all of the family is going with us. Regardless of the cost. Regardless that I have to take time off of work - I am heading out to fun in the sun. I was talking with someone recently about the work/life imbalance and we discussed the phrase "live to work? or work to live?" I realize that I live to work. My family suffers for it. My health suffers for it. My friendships suffer for it. So, I am going to attempt to balance that out a little and try my hand at working to live;) 

Christmas Vacation: visit and transition with the girls

I started this blog post half way through our 10 days with Grace and 10 days after Faith had come home for good. At that time I felt like "rocky and tense" - were probably the best words to sum up how it was going. I didn't post then because I didn't want it to be about complaining:)

However, in writing this post, I processed/learned some things about myself and my kids, and things got better. This is why I journal and blog - to grow and offer it in case someone else needs to hear it too:)

So, here is the longer answer of how I thought about the situation, was able to regain perspective, and got through the rest of the visit. 

First of all, Faith is doing great. We have had a couple of hiccups which really are just us getting to know each other again. She actually TALKS to us through said hiccups so we can get to a resolution. Who would have thought? lol! There are times that I have had a knee jerk reaction to her as if it is like 10+ months ago. Then I remind myself of how she has proven she is not who she was, and I challenge my thinking and therefore my response to her. I am working really hard to give her the benefit of the doubt and she has done nothing to make us doubt her. She is joyful, talkative, engaging, helpful, speaks up if she doesn't understand, is sharing her feelings, and in general is a pleasure to be around:) The most delightful change? She INITIATES a hug and prayer every night! That and when the boys talk back to us she sternly says, "just say 'yes Mom!'" lol!

The other day I walked into the living room and found her reading my bound books of previous blog posts from when the kids first came. She talked about how it was interesting to see it from my perspective - mostly about how I think about things differently than she does. I told her it was a dangerous thing to get caught up in my mind lol! 

As for how Grace did...that is harder to articulate. At the beginning of the week she was mostly quiet. Then she got comfortable and... emotionally dysregulated. I worked through 2 significant ideas as I analyzed what was going on with both her and I during that time. 

First: When I work with adults about stress management/emotional regulation I use a "coffee pot" analogy. When I work with kids I call it a lemonade pitcher or milk jug:)

Say a milk jug can hold 10 cups of milk. When it pours out into glasses it empties. Eventually it is empty and has to be refilled. 

Think of yourself as the milk jug. Think of the milk as "mental and physical capacity" and you are pouring it out all day long into kids, work, household, husband, hobbies, friends, projects, or whatever. On top of that you may have pain, depression, anxiety, etc that keeps you from filling all the way up (like there is a hole in the jug at cup 6, 8, etc) so you have to fill more frequently/be more intentional. We need to have self-awareness to know what fills us up and what empties us AND keep monitoring it throughout the day so we don't get to 0. The obvious things that fill us up are sleep, healthy food, hydration, exercise, connection, hobbies, etc. Each person is unique with what else fills them up, and what empties them. For example, being around people empties me quickly. For others, being around people is what fills them up. For me reading fills me up, for my husband it puts him to sleep with boredom lol! 

I realized half way through the week with Grace that she has no capacity to "hold" any sizeable amount of milk. She is a milk jug with a hole in the bottom. The moment that the milk is being poured into her she revels in it. As soon as the pouring stops she is empty again. I knew this before.

But, the new part I finally realized was that in addition to this she takes no responsibility for filling herself up (I am not sure she knows how to fill herself). She fully expects people around her to fill her up. And, given that I fell back into old perspectives/expectations when she came home, I held myself to the expectation that I was to fill her and keep her filled. Guess how well that went?

A significant part of parenting is self-awareness in how we respond to our children and why we respond the way that we do.

Short bunny trail that I promise (well, I think so anyway) will make sense in a minute- Beautiful is a big fan of the Enneagram personality quiz. She got me to take the quiz which I have done a few times. Usually I score a 1. Beautiful tells me that I am a typical 1. Go figure lol!

As Beautiful describes it, 1's tend to strive to be 7's on good days and when overwhelmed revert to 4's. So, in as layman's terms as I can understand. I want everything orderly and perfect and structured (anyone who knows me think that is wrong? lol!). When I try to get outside of my comfort zone and do special things I attempt to be "adventurous and spontaneous and fun." But then I get overwhelmed and get a bit...moody? emotional? dysregulated? Which is exactly the opposite of "orderly, perfect, and structured lol! 

I was considering this idea during the visit as I felt myself becoming dysregulated. When I get dysregulated I retreat into myself (well, into a book. A purely fiction, never would happen in reality, always a happy ending, book). But, I couldn't do that because - transition and visit... 

During quarantine I had found a bit of a balance of my "capacity." Really, I was working way too much and all of my energy was going to work - the boys at home didn't really care because they are busy with their own things (and can fill themselves up without any help from me at all thank you very much). But, enter my daughters this week? Totally upended my "balance." I was pouring out way more than I had coming in for 2 reasons: 

The first one was my fault:  because to fill back up I need quiet and alone time and it makes me feel guilty to not be "entertaining" the girls (particularly Grace). I held the ridiculous expectation that I was to be an adventurous "7" and make our Christmas visit the most delightful days of our whole lives (well, not quite that unicorn and rainbowy but you get the unrealistic picture)...

And secondly, Grace can't fill herself up or hold any milk.

For example, one night after I had engaged in fun and filling activities with her all day, Grace dysregulated and said that I didn't love her, didn't want her around, how can anyone love her when she has messed up as much as she has, she doesn't deserve another chance, and she doesn't belong. That made me feel like I was pouring myself out for what purpose? All that is poured into her is for the moment and she can't hold any of it over for the next 30 minutes. It.is.so.exhausting. In the past she would self-sabotage at that time. So I tried, for the manyith time, to explain about her not holding any milk. She finally seemed to hear some of this. But this time I added that she needs to learn how to fill herself up. Then I put her in charge of that for the rest of the visit. That took off the unrealistic pressure that I had to entertain her the entire time. So when she would dysregulate, I would suggest to her that she was empty and ask her to think of things to fill herself up. We had several fun projects going throughout the week like putting a puzzle together, etc for her to chose from. That allowed her to take some ownership in her own happiness. 

Christmas Day we had 14 people in the house so I was pouring out into many people and she got less individual attention and then she dysregulated. Of course that resulted in us needing to stop everything for an hour and work her though it, but she did not spiral into the old behaviors. So, this visit gave us hope that she has made progress, but was also a reminder that she continues to be exactly where she needs to be. It also helped me learn some new facets of myself. Win/win:)