I started real Physical Therapy exercises. I’m actually using muscles I haven’t used in 1+ years. Always exciting. Which also means I’ve spent the whole week constantly fighting my normal bad posture that I’ve developed over the last year and a half of always wanting to fall back. A sore neck is also my constant companion if I have bad posture for long enough, so it’s been a good motivator to tuck that chin in and use my tummy muscles.
I tried Sacro-cranial therapy on Wednesday. The jury is still out on whether it’s helping, but I did feel like there was better flow at the base of my skull. I go in again next week. The doctor who did it, knew Dr Z and when she found out I’d been going there for 3+ years, she looked at me and said you must be Dr Z’s problem child. I laughed and said, well, yes, probably one of them.
Friday was a hard day and I’m not sure why. Maybe because I was out Tuesday, Wednesday and Thursday. Well, actually, yes, I’m sure that’s why. Each of those days I had three separate appointment or events happening, and while I did really well compared to how I would’ve done a month ago. I needed a break by Friday!
Friday I did manage to do one thing and that was to finish putting up a shelf on our window sill out side the family room window (pictured above). The cats love to sit on this windowsill and look pleadingly inside which means it’s a constant losing battle to keep dirt off of it. Hopefully now they’ll sit on the dark shelf instead.
Well, signing off. I’m starting to feel a little off from tracking my typing.
This week has been a mostly up! week. No setbacks, I’ve gotten into a good sleeping rhythm and am making progress on tweaking my diet. I got my food sensitivity test back, and I had already almost everything I came back sensitive too, but the two surprises were Soy – I’m not reacting and Cane Sugar – I’m reacting (majorly!). The Cane Sugar is especially surprising as I don’t really eat sugar. So I’ll be seeing my naturapath on Wednesday to talk more about diet changes. And the next step.
I also made an appointment to try Sacro Occiptal therapy. I’m hoping it might help with my Hydrops/lymph fluid drainage issues. My ear has been feeling full for over a month now and it’s not helping anything.
I started Physical Therapy this week. Over the last year and half, with such limited activity and with always feeling like I’m going to fall over backwards, my posture has sadly slumped into something that might be mistaken for a pregnant banana. Not good, people, not good. So now I have three teeny exercises to try and do each day. One of which, the only way I’ve been able to figure out how to implement it is by lying on the edge of our pool table.
I listened to this talk on FODMAPS by Dr. Siebecker which was incredibly helpful. I’m still trying to make sense of it all, but this certainly helped!
Today’s my birthday! After church, I spent time this afternoon with my family at Council Crest and enjoying the views and miraculous, sunny, 60 degree weather. The mountains were gorgeous. And my family is awesome, so it was all good.
Been listening to seminars from The Healthy Gut Summit the past few days. I’ve listened to some of the presenters before, during The Digestion Sessions, but at that time I was so new to everything that a lot of it went over my head. Now, I’m a smidgen smarter and I feel like I’m getting a deeper level. So yay.
Today was beautiful and sunny. It’s feeling like spring here, and everything is a month early. A huge victory today was spending time outside planting primroses. And it was actually fun. Usually bending down feels so unnatural and unstable that I resist it by all means, or else I’m literally willing myself to push through it, but it’s becoming normal again! Slowly, and not every day, but yes, this is definite progress!
On Saturday, I finally signed up for brainHQ as I continue to recover from the effects of my concussion. I’ve been waiting 6 months for permission from my functional neurologist to begin it.
Randomly, I was reading this article, and they mentioned the development of brain HQ in it.
Right now, I”m working on switching up my sleep schedule. Ever since the stress that was California at Christmas time, I’ve been waking up at 9 naturally. Which totally sucks. I’ve tried several times to switch it up, but haven’t been successful, this time though, I’m determined. Which might make a difference, or might not. We’ll see. Today my alarm went off at 7:30 and 8. I then got up at 8:10. Which was a whole lot better than 8:30 the day before, and 9. I’ve never been so good at ignoring my alarms before, so this is a new challenge. And of course, the flip side of the coin being I’ve got to get to bed on time. I’m having to be the adult in this situation.
And because this post isn’t going to get any more exciting, I’ll just keep going. I moved the family lazyboy chair down to the basement today. Once again, being the adult here. I’m pretty sure the fact that I plop down on it any chance I get has not done wonders for my neck. And while my neck being sore can be a good thing as it means I’m actually moving around, I am working on sitting in chairs that don’t let me recline like a banana in a hammock. Work those neck muscles, girl.
Today, I’ve been in a bad mood. Well, not a horribly bad mood, but more of a “I think I dropped my iron level down to low” and now my neurotransmitters are off balance. It used to be that if I just missed a couple evening doses my mood went down the tank super fast, but for the last week, I’ve been trying to go down on it to see if I’m less sensitive, and while, yes, I didn’t get in a bad mood as fast as one can eat a donut, it does seem to have happened. Which means I’ll be sticking with my original dosage for a while longer. I also dealt with a million phone calls in an hour trying to sort out getting my blood drawn this week to test my iron and potassium levels, figuring out how to piggy-back some test my naturapath wants and getting referrals to a physical therapist. And, I still have more calls to make tomorrow to get it all sorted out. Wish me luck.
After acupuncture (which did help my mood), I got to visit my ever adorable nephew. He’s five days old and still in the squishy yoda phase. Unfortunately, he’s also in the sleep during the day and party at night so Jacob, Mom and I did the hard work of holding him while the parents got some good napping in while we were there. We also cleaned house and cooked some dinners. Have I mentioned what an awesome sister-in-law I can be? Sometimes…sometimes.
We also celebrated another important day today… my brother Jacob’s adoption day. Whew. It’s almost impossible to imagine him not being here.
I have been slowly gathering new stuff to put up in my room and today was the push to try and get everything installed… Every project is slow these days. But, at least I’m getting something done, even if I need to think in terms of weeks and not hours.
I also asked to join a yahoo group about MdDS and did get accepted, but now I’m feeling a little overwhelmed about where to start. I’ve never been a part of a online group before, so I’m not sure how it’s supposed to work. Hopefully I’ll be up to the challenge on Monday. I’m very curious to read about people’s experiences with the new treatment and whether people have found relief only be going to Mt. Sinai or if they have been able to use functional neurologists to do it.
My eyes are starting to feel super tired, so I think I’m done for the day. Off to bed I head!
Secondary Endolymphatic Hydrops. Try saying that five times fast. I dare you.
I suspect that I developed very mild SEH after my first concussion as my right ear would consistently “pop” at various times. I remember the summer before my second concussion thinking “Well, I guess my ear will just pop the rest of my life.” My functional neurologist didn’t seem to make anything of it, and it didn’t cause me any pain, so I didn’t worry about it.
Fast forward a month or two, I’d had my second concussion, and whoa, it was a dizzy world out there. My right ear (and left ear, to a lesser extent) always felt full, like someone had stuffed cotton in their while I was sleeping, and popped pretty constantly. It was pretty darn annoying, especially when it felt SO FULL. Finally, after 4 months of dealing with this pressure, I started mentioning it to the functional neurologist every time I saw him (I had mentioned it to him before of course, but it was never high enough priority to be the main focus), and it finally clicked for him. He suggested the possibility of it being Hydrops, and I started lowering my salt intake to less than 1200mg a day. Whew! That was hard. Oh my gosh. But it was so worth it! After three days, the popping had lessened, the pressure had lessened, and I found myself having more stamina, and less dizziness.
Within a week, I got put on hydroclorothiazide (a diuretic) to help “drain” extra fluid out of my ear. Within two weeks, it felt much better. Not normal, but much better.
Today was exciting. My nephew was born. My parent’s first grandchild. My first nephew. You get the idea.
After dropping off mom to get her trigger point injections, Jacob and I called to see if we could come visit the baby. Tragedies of tragedies, it turned out (which we only discovered standing forlornly in the entryway) that Jacob couldn’t come inside the maternity ward. Because he was thirteen. An 18 year old adult with a cough could. But because it is flu and cold season, children were forbidden. Which pretty much led to a disappointing time. My brother, Scott (the new dad) was mad. I was about to burst into tears as I couldn’t imagine not seeing the baby, but how could I go in and leave Jacob out by himself.
Eventually, Scott went and talked to the nurses some more, and this was the special dispensation they made.
Scott could wheel the baby into the “closed during the flu season” patient lounge and Jacob and I could stand at the window and look into see the baby.
It was precious. And ridiculously sad at the same time. I felt like I was transported to the “dark ages” where babies could only be seen by lining up at the window in the hospital.
As Jacob and I trudged, somewhat despondently back to the car, I said, “That was crazy, it was like a tv show, or something. I can’t believe they wouldn’t let us in.” Jacob agreed and said “Yeah, just like The Middle.” And yup, he was right.
Well, I finally made it to an appointment with a naturapath. I’ve spent most of the last 3 months trying very hard not to self-diagnose myself to much with as many different dreaded auto-immune diseases as I can research, but it’s been hard. So, I’ve finally got myself to a doctor and we’re beginning the process of slowly testing stuff. First up, is the oh so dreaded food sensitivity test. Can’t wait to find out if I’ll never be able to eat okra again. Actually, I like okra, so bring it on.
I also spent time this evening reading more posts about SIBO, FODMAPS and SCD and, well, how many more shouting capitalized words can I come up with that look like they should be words but aren’t? I’m trying to make sense of the whole fermentable foods, resistant starch, colon vs ileum, fructose intolerance, etc. I feel like I find 5 more questions for every 1 answer. The good news is that I think I found confirmation that I’m not crazy and I probably don’t need to be following the whole FODMAPS diet. Which is actually really good, because if I had to do that, then yes, I think I would be officially Crazy with a capital C.
In other news, I managed to get a walk into day with a brother and mother. A triumph, my dear, a triumph.
Also, right now I’m watching To Catch A Smuggler on netflix. Whew, glad my career options never included being a drug mule. No sir!