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http://www.npr.org/sections/health-shots/2015/10/08/446619645/calfornia-approves-laws-to-cut-use-of-antipsychotics-in-foster-care

This is definitely a step in the right direction…it is something that needs to happen nationwide. This is a situation that breaks my heart. So many of these kids are never fully or properly evaluated or given proper mental health care, and many are medicated for conditions that they don’t even have. They then have labels placed on them and have to deal with a myriad of side effects from heavy medications that can many times turn out to be unnecessary. Already growing up with some level of trauma regarding how they came into the system, the constant instability, and no real say over their lives, I can’t imagine that this helps  in these children’s uphill struggle to become upstanding and respected citizens.

(Most) people would never allow this to happen to their own children.

These are children who belong to all of us.

We have to make changes.

We have to fight for them.

Surgery #3

So surgery #3 happens in 5 days. When I look forward, I’m so anxious for relief. When I look back, it’s so overwhelming to realize that in August of 2010 when I went in for a routine geneticist appointment, we had no idea there was neurological involvement with EDS. About 2 and a half years later, I’m onto facing my third major surgery. While the first two were necessary in saving my life and preserving nerve function, I have so much hope that this one will vastly improve my quality of life over all.

 

Tethered cord means that my spinal cord has attached to my spine. It’s most likely been that way since before my first surgery, but since having my first two vertebrae fused together, the cord is now being pulled in both directions. This causes pain with every motion. In trying to explain it to Mike, I told him that while the neck pain before surgery could get worse than the pain I have now, it also changed. My normal was an 8, the worst was a 10, and sometimes it would drop to a 6 or 7. This is a 9. Constantly, never changing. I feel as if I have a knife jabbing into my lower back. For whatever reason, tethered cord also greatly affects my hips (which already give me problems). They now dislocate at least a dozen times a day. They will literally fall out of the socket while I am lying in bed. I can no longer wear jeans because the harshness of the fabric against my joints causes so much discomfort that alone can increase my pain to a 10.

 

The other thing that is incredibly painful is sitting in cars, especially small cars like our Civic. If I ride for any longer than 30 minutes, I’m near tears by the time we arrive wherever we are going and walk like a penguin for another hour. It’s been my life for so long now (this actually influenced my decision on where I went to college, I knew if I went anywhere outside a two hour radius I’d rarely be able to come home). Sometimes I forget that it’s not normal. Someone commented the other day about “why not just buying a certain thing at a store”, and all that could run through my head was how much energy it would take to go to one store to just buy one thing. Then I realized that really, it shouldn’t be that hard. Dreading grocery shopping and having to physically tell my feet to lift off the ground by the end of the trip and putting my weight on the cart…none of that is normal.

 

The pain causes my sleep patterns to be massively out of order…I stay up often all night tossing and turning unable to get comfortable then finally fall asleep due to sheer exhaustion. However, sleeping in does not help my sleep schedule but it’s the only way I’m getting any rest at this point.

 

With the cord release, I should experience relief of lower back pain and my hips should settle down. A friend told me that she no longer has knee hyper-extension when standing, which would increase the stability of my entire body.

 

The major risk of this surgery is the chance of me developing a CSF leak afterwards. Sometimes it just happens, regardless of how flawless the surgery was. It’s just a matter of how the body heals. Regardless, I will have to lie flat on my back for 2-3 days following surgery (ugh so boring). If a leak develops, I will need a blood patch.

 

Hopefully, all goes well. I trust Dr. Henderson with my life, and I am excited to see his dear face again. We got him a ceramic skull that can be used as a candy dish as a present, I think he’ll find it as funny as we do.

 

Thank you so much for all of your support. Love you. -Halle

People keep asking me for the recipes on all my homemade bath products, so I figured I would just make a blog post. I started doing this primarily because I am very sensitive and the chemicals in store bought things were irritating my skin and aggravating a health condition, but it’s actually something I’ve meant to do for a while. Have you looked at all of the ingredients in some of our products? Why so many? What are they? (It’s gonna kill us all!!!)

 

First off, you need to know that I love coconut oil, and soon you will too. You will hug tubs of it. You will jump up and down when it is on sale. You will determine that it is the best product in the world and wonder how you ever lived without it. It needs to be unrefined, organic coconut oil. It will come in a solid form.

 

Lotion

I seriously just scoop out some coconut oil out of the tub into a bowl. I then add different things depending on what I want to use it for.

 

For body lotion (I smear this on after every shower and it’s glorious) I simply add in some drops of Vitamin E oil. (Hit up Amazon for that. Or Trader Joes.) You can add some drops of whatever essential oil you like if you want a scented lotion. I use an electric mixer to get everything nice and mixed through and fluffy. Coconut oil is very temperamental with temperature, I’ve had the same bottle go from rock hard to nearly completely liquid in the same room as the temperature has changed. (Never microwave your coconut oil, it will lose some of its nutrients).

 

For an acne treatment, maintenance regimen, I add tea tree oil and a little lavender to some for my facial lotion. These have antibacterial properties and are fantastic. If you happen to have an annoying scab left on your face from an old zit, moisturize that thing. After you wash your face and about 5 times before you go to bed. That dead skin will suck up that moisture and slough off faster. And because you know what you’re putting on it is all-natural, it’s kind of awesome.

 

Shampoo

Part of the problem I discovered is that most of us have been shampooing our hair wrong our whole lives. You are not supposed to pile it on top of your head like in an herbal essence commercial. It breaks ends. Instead, massage shampoo into your roots and then add some as you work down to your ends. I started making my own and it is lovely. Go buy 2 condiment bottles from Target and use them for your shampoo and rinse.

 

½ cup coconut milk

2/3 cup castile soap (Dr. Broners is great)

2 teaspoons extra virgin olive oil

 

Things will separate while the bottle is in the shower, but no big deal. Just shake it up and you are good to go!

 

Conditioning Rinse

Add 3 Tb apple cider vinegar to the condiment bottle

Fill the rest with water

 

This sounds strange, but you’ll like it once you use it. The vinegar actually helps restore the proper pH balance to your hair. After washing, makes sure you squeeze the excess water out before applying the vinegar rinse. Leave in for a few minutes then rinse out!

 

With this regimen, I don’t need to use any hair products anymore. ANY. Hair. Products. This comes from the girl who when her hair is long wears it crazy unleashed curly. I just dry it and if it weren’t for the static electricity, I probably wouldn’t even have to straighten it. Amazing!

 

Shaving Cream

This stuff is incredible. I have really really stubbly man-like hair. I swear this helps me shave less often, I get less razor burn, AND it moisturizes while you shave. All you need is:

1 ½ cups coconut oil

3 Tb honey

 

Whip it up with an electric beater and spoon it into an airtight container. (I got some good glass ones at Michaels). WARNING: This will make your shower slippery if you shave your legs, so make sure you clean your shower floor afterwards (or during!)

 

Shower Cleaner

Get one of those little dishwands with the scrubby head and the handle you put dishsoap in. Put a 1:1 ratio of white vinegar and Dawn in it and keep it in your shower. Every day, scrub down a little bit and then rinse off. This way you never have to actually “scrub down the shower.” Just make sure you scrub the floor after shaving!

 

Body Wash

An empty container

¾ cup castile soap (Dr. Broners)

¼ cup olive oil

¼ cup almond oil

¾ cup warm water

 

Pour into funnel into container and shake to mix. This will also separate in the shower (ugh think of all the chemicals in stuff to make them not separate) so just shake it before each use. It will be a lot more watery than body wash you are used to, so don’t expect a gel. This has actually really helped my itchiness that is a side effect from some of my medications. I think the oils really help deeply moisturize.

 

Deoderant

Did you know that almost all American deodorants have aluminum in them? And that it’s directly linked to cancer? EW. First of all, your first priority should not be antiperspirant. Your body needs to sweat. It’s a way to release toxins. It’s unhealthy to not release them. Deodorizing yourself is the primary thing we’re looking at. This is very different, because it doesn’t come in a stick. It has a cream consistency and you apply it with your fingertips. My roommate had reservations about applying it with her fingers, my husband didn’t believe it would work. They both love it now.

 

5-6 Tb coconut oil

1/8 cup arrowroot powder (Raisin Rack in the refrigerated section)

1/8 cup cornstarch (this works as a slight antiperspirant)

¼ cup baking soda

I add a few drops of tea tree oil for the antibacterial properties in case I nick myself shaving. I’m clumsy.

 

Mix the powders together and then slowly add in the coconut oil until you have a “pomade” consistency and the powders are mostly dissolved. You can add the last tablespoon of coconut oil as you deem needed for consistency. In order to apply, just scoop out an amount about the size of your finger tip and rub it in to your armpit until absorbed. (Roomate has overcome the “I’m touching my pits” thing, and husband came home every day for a week, threw his arms up and went “smell me!” before deeming it successful.)

 

My facial regimen is also a little different. If I have makeup on, I do a quick wash with warm water, then I apply honey to my face and leave it on for about 10 minutes. After washing, I “tone” with apple cider vinegar. Sometimes I can only do this every other day because it stings, but it again restores the pH values and makes your skin “glow”. I finish off with my amazing lotion and I’m done!

Fundraising for Surgery

I’m having another spinal surgery March 18th…really hoping this one will enable me to start living somewhat of a normal life again. Mike and I have started the certification process to become foster-to-adopt parents, and I really feel as if this is the right time for that to happen. However, fostering can only happen if I’m healthy enough to take care of children (clearly). Right now, I’m in too much pain to stand long enough to make dinner. I can barely keep up with the house cleaning. Odds are though, this surgery should vastly improve the major pain problems I’m having now. I will always have issues and bad days. I’m not ignorant of that. But we are very hopeful that this might be the thing that turns the tide into making it possible for us to fulfill our dream of opening our home even more. We find such joy in doing it with friends, we now long to do it with children, and to someday call some of those children our own. If you’d like to help us with some of the cost, we would be extremely grateful. The link is posted above. Thank you so much!

Round 3

In mid-December, Sarrah officially loaded up a trailer and her puppy Orfie and moved from Boston to our house in Canton. Now that Sarrah has finally stopped working and slowed down, her body is finally letting her know how bad she has gotten.

 

This past Tuesday, Sarrah had her first surgery. She had C1/C2 fused in Maryland by my neurosurgeon, Dr. Henderson. Unfortunately, all of her pain is coming from her lower neck. She had to have her upper fusion done first because she was so unstable it was too dangerous to do the lower fusion. If she had turned her head one more degree further than what she was, she could have had a stroke or severed an artery. Dr. Henderson had to stabilize her so that he can perform the lower fusion. This means that not only will Sarrah be living with the same pain she was in before, but now she has post-operative pain as well.

 

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On Tuesday, she had her surgery. It was flawless. She didn’t even need a drain put in    afterwards and even her first dressing change had no fluid on it. Her posture is perfect  (before she was completely forced forward). She was up and walking that first night, less  than 12 hours after surgery. She’s a freaking champ. Unfortunately, her liver enzymes burn through medication so quickly that she was unable to get her pain under control for quite awhile. Dear Dr. Henderson saw me in the hall as he was running to another surgery and stopped to ask me how her pain was doing. When I told him, he called the pharmacy on the way back to the OR to let them know to up her dosage. That seemed to help, and day 2 they started her on an anti-inflammatory that helped dramatically.

 

On Wednesday, I had my appointment with Dr. Henderson to try to find the cause of my back pain as well as the occipital head pain. As we had expected, I have Occult Tethered Cord Syndrome. Your spinal cord is supposed to hang free at the bottom, but in people with connective tissue disorders, it can tether to the base of your spine. (Children can be born with this, but it is very rarely seen in adults). Now that I am fused at C1/C2, my spinal cord is being yanked in both directions. I was so relieved to finally have an answer. After having gone through two surgeries to relieve a compressed brain stem, I felt stupid being kept awake all night by low back pain. I felt like I should be stronger than that, and that I should be able to push through it. Now that I know something is really wrong, I feel as if I can cut myself a break. I was off the charts for symptoms, and Dr. Henderson was very upset to learn how high my pain has been. When doing the pinprick test with the safety pin, I had numbness all over the backs of my legs and lower back. My gait has changed and my leg weakness is pathetic.

 

Dr. Henderson’s office is truly filled with wonderful people. When I explained that Sarrah and I were living together and that she would need her second surgery in 6ish weeks, I asked if it were at all possible to have our surgeries done one the same day. They were so accommodating. So on March 18, Sarrah will have C5-C7 fused and plated in the morning. Directly after, I will have my Tethered Cord released. In another slight twist, the next day my cousin Katie will be having her first surgery with Dr. Henderson as well. She will be having a fusion at C3/C4. So it looks like we’ll just be taking over Dr. Henderson’s little wing of the hospital for a few days. We’re already planning on bringing some baked goods to keep ourselves in the nurses’ good graces. 🙂

 

It’s a rather strange thing to have become so familiar with my neurosurgeon through my own surgeries and appointments and accompanying others that we can joke around with him and trade stories. We talked about Netflix and our love of the show Arrow and I am under instruction to watch the show “Foyle’s War” soon.

 

So in summary…this will probably be a hellish 6 weeks for Sarrah until she gets the actual problem area fixed. I have 6 more weeks of not sleeping and never being able to find a comfortable position. 6. More. Weeks. So excited. After my previous surgeries, this surgery kind of seems like cake. The only thing that will be rough is that I have to lay flat for 2 days to prevent a CSF leak, so that could be a little miserable. But other than that, the healing process is much faster than anything else I’ve done. So…here’s to round three.

The Lie of Strength

“We tell people they are “strong” when we are uncomfortable with their pain and would prefer that they shut up and not bother us with it. To say “but you are strong” is telling someone “I don’t think you should feel that way,” and it’s not a compliment. I don’t think that strength means being invulnerable, or pretending that you are.

 

You don’t owe it to your friends to be the “strong” one. Just because you have always been the good listener and the shoulder to cry on, doesn’t mean you have to maintain that role now when you need a good listener and a shoulder to cry on.

 

Be sad. Be angry. Let your heart break – in the diner, on someone’s futon, in the park, on the way to the zoo, at brunch, over drinks, in the therapist’s office, on the bus – Wherever it breaks, let it break all the way open, let it run out and down and spread out in a soggy puddle at your feet. Say, “I’m sorry, I can’t listen to you today, my heart is broken. Will you sit with me a while and I’ll tell you about it?“

 

Say, “I can’t take care of you today, but you can take care of me, and maybe tomorrow I will take care of you, and we can trade off like that for a while, okay?”

 

Say, “I love you, and I love that you think I’m strong, but I don’t feel like being strong today. I feel like being angry and crazy and sad. Can we go to the movies or just sit here quietly or take a walk or talk about it or not talk about it?“

 

Your friends may get scared when you do this. If you, the “strong” one can break, what does that say about them? That’s why they push back at you and try to remind you of your strength, when what you need is for them to stand by you in your pain and weakness. They don’t have to solve that pain, they just have to bear witness to it. Maybe they don’t know how – a lot of people don’t know what to do in the face of other people’s pain.

 

They want to fix everything, and if they can’t fix it they feel inadequate. As the “strong” one you can help them out with this by saying “You don’t have to fix it. You don’t have to do anything. Just be with me, and listen, and love me, and I’ll love you back. That’s all I need – to know that you love me, even when I’m sad and scared and don’t know what to do next.”

 

To ask for help is strength.

 

To admit you don’t know is strength.

 

To tell the truth about what’s happening is strength.

 

To be imperfect and to trust that imperfect people will love you despite those imperfections (albeit imperfectly) is strength.

 

To let the people you love see how you really feel – without trying to hide or stage manage their perception of you – is strength.”

—  The Lie of Strength, Captain Awkward

How to Give Thanks?

It’s about to be a busy time here. Our dear friend, Sarrah, will be moving in with us in mid-December. Sarrah also battles Ehlers-Danlos and other disorders, and has been become increasingly worse over the past year as the result of cranial instability. Sarrah needs the same surgeries I’ve had: C1/C2 as well as a lower fusion. She also needs a hardware removal from a previous craniotomy.

Incredibly, Sarrah has been managing to work full time up to this point. She is brilliant, and works as a forensic toxicologist for the Massachusetts State Police in Boston. She lives alone with her wonderful pitbull puppy Orfie. However, the symptoms and pain have just become too much and she is unable to work anymore. It’s also no longer safe for her to live alone, as she has been passing out, struggles with stairs, and has so much nerve damage she can barely feel her hands.

Clearly, we are well equipped to be able to deal with not only the illness before hand, but the recovery after surgery. I know what to expect first hand, and Mike knows what to expect in aiding recovery. It’s a learning experience: how to lift; help sit up, stabilize in sitting down, etc. Just because we have surgery doesn’t mean we stop having EDS, so our limbs still pop out. We can’t be helped around like normal people.

In addition to being well equipped, Sarrah is one of my best friends. Our entire family loves her. We understand her situation the best anyone can. We understand her pain, the grief she deals with because of all the things she’s had to give up, and the constant, daily fight to keep going. When the pain is overwhelming and you know it will always be there, it can be hard to keep going. All that to say, for all intents and purposes; she is family. We are able to help, we have a room, and she has a need. There was never really a question for us. It was the only thing that made sense.  In fact, it’s almost a relief. To have her so far away while she’s been hurting has rendered all three of us feeling extraordinarily helpless.

So to us, Sarrah is our family. Once it was apparent that she needed to move back to Ohio, it was never even a question that our home was open to her. Of course it was.

What has been surprising to us, as well as upsetting, is the reaction that we have been getting from most people. People are overwhelming surprised and shocked at the fact that we are “taking in” another person, especially someone with health problems. We have been told countless times what a good thing it is that we’re doing, how generous we are, etc.

To be honest? I find this heartbreaking. No part of me understands why this should be unusual. Sarrah is like family and she needs us. I simply cannot grasp why this would not be the instinctual move of anyone for someone they care about.

I was expressing these feelings to Mike the other day, and he wisely stated that it is because we live in such an entitlement society. Society teaches us that Mike has worked very hard to earn us this lovely home, and that it is ours to enjoy for ourselves. We are subliminally taught that our possessions are ours, perhaps to share with others once in awhile, but certainly not to be treated as if they were communal objects.

This is not to say that people do not want to help. They do. But the sad reality is that most often, people want to help in a specific, condensed window of time. Help move over a Saturday. A few hours at a soup kitchen or at a church function or teaching a class on a weeknight. Something that can be approached, accomplished, and left.

Mike and I simply cannot see past the fact that we have room for other people here. We are not blind to the fact that it will be challenging, that it will inconvenient at times, that the four of us will at some point or another argue or clash. But since when did life become about convenience?

If you are a believer in Jesus Christ, then you know that all over his teachings are things about community and helping one another and truly living together to help each other limp through this battlefield called life. If you don’t have faith or religion, then I would simply say that this is such a societal thing. In most cultures, this is not at all unusual. Multiple generations commonly live together in other societies, as well as different families coming together. This idea of the necessity of couples and families living on their own with what they’ve earned is very new, and it is very Western.

I truly wince every time someone says we’re doing something wonderful, because we’re not. We’re doing what makes sense. We’re also doing what will be helpful for me, in that I will no longer be alone throughout the day. We are all at least a little hurting and broken. And we all need a little help along the way. So today, on this day of Thanksgiving, as you are thankful for your family and friends, as you give thanks for things such as your home and your belongings, I challenge you to examine how you should hold those things as “yours”. Do we give thanks for too much in that we hold too tightly to things simply in considering them as solely ours?