Testing...1...2...3... (& Happy Thanksgiving!)

 

Tama: "And then you push... no wait. I think i forgot something..."

 

 

Tama: "You have to remove this top part first."

 

 

Tama: "Swing it down annd you push it into the muscle really hard until it clicks..."

 

Lucas: "What are you doing Tama-kun?"

 

Tama: "Holding it there for 5 seconds... I'm practicing so I can help Mommy with her allergy medication."

 

Lucas: "You know it's just baking soda, right?"

 

 

Tama: "Yah but if she eats any by accident she has to take this right away. And we have to call 911. And then call Daddy. Mommy even said that Katnaper said that some people don't know that they still have to go to the hospital even with the medication."

 

Lucas: *sigh* "It's not like there is some baking soda bandit lurking around the corner ready to ambush her..."

 

Tama: "Now I need to reset this and practice more. Mommy hates needles so I have to learn how to do this in case she gets too scared."

 

Lucas: "An easier solution would just to send Dakota after her and pin her down. She's fierce."

 

~~~~~

So much to wrap my mind around after finally having my doctor's appointment yesterday. Having to keep the EpiPens with me has been a bigger shock than I expected. Its so easy to think "Okay, just don't eat any baked goods (even if my other food allergies/intollerances allowed it) and you'll be fine." How I wish it was that simple. Baking powder has baking soda in it, and washing soda from what I can find is baked baking soda. So huge amounts of laundry detergents and cleaning products, including toothpaste, are, or have the potential to be deadly. Carbonated drinks may use baking soda in the process (still a bit unsure about this but not going to test it) but club soda and soda water certainly do. You know standard red fire extinguishers everyone has in their homes and businesses? Yep, filled with tons of baking soda. And I'm still trying to figure out if even eating off of dishes washed with powdered dishwasher detergent could cause a reaction. Good thing I realized that before Thanksgiving at my mom's house tomorrow. Oh, and some people put baking soda in mashed potatoes.

 

LiveStrong[/url]"]Sodium bicarbonate is a common ingredient in medications used to treat heartburn, acid indigestion or a sour stomach. Products such as toothpaste and denture cleaners, bath beads and salts, baby and deodorant powders include sodium bicarbonate, mainly because of its odor neutralizing properties. Cleaning products use the large granule, industrial grade version of sodium bicarbonate. Carpet deodorizers, dry bleach and detergent based cleaners take advantage of the odor neutralizing, mild abrasive and grease cutting properties of sodium bicarbonate.

 

Trying to research this has been hella hard. All I can find is the 'wondrous uses for the ultra-safe and natural compound that is baking soda!' Searching high and low on the internet and I could only find one reference to baking soda allergy, Katnaper found another. So common it isn't, and lack of information makes it really scary. I'm really starting to understand how people with extreme peanut allergies feel like, but also a little envious that they have a network of information to rely on.

 

Also at my doctor's appointment yesterday we talked extensively about the mobility and exhaustion issues I've been having to deal with more and more this year. It has gutted me that I haven't been able to participate more in hobby stuff with my photos, but I literally haven't had the energy to take them. Sorry about the shitty 'bed pics' above. It really is the best I can do right now. So many days I'm so physically exhausted that even lifting my arms takes a lot of effort, and that is if they aren't screaming in pain when I try to move them. A few days the last two months have been so bad that I can hardly lift my phone to text Raven, and just trying to move my fingers to type is slower than a sloth for a simple sentence and painful. It's like I'm back at 378 pounds overnight, despite being so sick this year that I've lost 60 pounds (still have a long way to go before I get close to my ideal weight.)

 

In addition to being so physically exhausted that it hurts, I'm constantly getting dizzy spells, stumbling when I do try to walk, and more frequently finding that when I try to stand up even for a few minutes that multiple times now I've nearly fallen over completely if I hadn't caught myself. It's so scary having a normally functioning mind in a body that is acting like I'm 85 when I just turned 39.

 

After a lot of research I have my suspicions of what the cause of this might be, but generally that specific diagnosis comes about after eliminating every other possible alternative first. And if it is what I think it is, I've had it since I was 12, at a time where it was just thought to be 'mass hysteria' and not a 'real' medical problem. I just wish I could understand why this last year has gotten so bad, despite knowing that for some it can be a disease that gets progressively worse, but the symptoms also fluctuate a lot in severity over time and can improve for a time. But the fluctuating symptoms is one of the most frustrating things about this, and one of the reasons for so long it was treated as a made up sickness. Some thing 'convenient' to get out of work or other things that people just 'didn't feel like doing.' Yeah, have any normal functioning adult try and be bed bound for 5+ months, leaving the house only 3 times, and then see how much they would like it. After three or so days of having the flu, most of those people would be itching to get out of bed. But I've had way too many days where I had to think about when I woke up if I even had the energy to sit up. I've spent days in near complete darkness with noise-canceling headphones on because I couldn't tolerate anything else.

 

So having my new doctor see that I couldn't walk 'heel to toe' (like cops have intoxicated people do) and I thought it would be stupidly easy. First step was fine. Second step and I had to suddenly throw my arms out so I didn't fall over, and continuing to walk like that just made me look totally drunk. It was embarrassing to my very OCD self that I couldn't even control my body even though it helped the doctor to see that something isn't right. I still want to cry (with relief) when he acknowledged that something truly was wrong and what I've suffered this last year would be hard for anyone. When I was 12, I was diagnosed with a psychosomatic illness (medical way of saying you are just making up the symptoms) when I was home sick for three months and couldn't go to school because I had massive headaches, extreme light sensitivities, frequent and severe dizzy spells, and this same utter lack of physical energy/strength. I was always taught to trust doctors without question. So I assumed that I must have made it up and I was just over exaggerating for attention or to avoid doing stuff, especially school (according to the doctor.) So in the 27 years since then I learned to blame myself for being weak, stupid, lazy... and other unjustified personal judgments when I just didn't have the strength to accomplish what I needed to do. I kept thinking if I called myself enough mean names that I'd get mad enough and somehow 'find' the energy I didn't have to function like everyone else my age. What was worse was it was often reinforced by those around me, thinking I was just some perpetually lazy kid.

 

So having my doctor say that I need to see an allergist, immunologist, and neurologist was the first medical validation I've had in all these years that I'm not flipping crazy. I know it's really screwed up that I've spent the last year scrambling to figure out how my mind could think up all of this up (food issues included) as some way to avoid something... but it is so hard to break away from a lifetime of personal judgments based on things I couldn't control. The only solid medical thing I knew was at 12 years old I apparently had the 'superpower' to make my mind do whatever it wished and make it reality. (That is only half said in jest.) I still often find myself grieving for the hell my younger self suffered in silence, simply because no one would believe me. Even after the medical side of this is solved, I still will have to spend years undoing the mental damage that I have just barely begun to untangle. But I don't think I could ever forget the look on the pediatrician's face, as if he was disgusted with me, when he said it was a psychosomatic illness. I may have been young, but I wasn't stupid. I didn't have to look that up to know what it meant.

 

This was not the 'Thanksgiving' post I wish I could have made, but it is the one I am making. Even though I'm not as active on the forums as I used to be, I could not express enough how much all of you mean to me. You have been the lifeline against the battle of crazy and shit hitting the fan in my head. And I really appreciate the PMs I got too from people offering their knowledge or suggestions on what may be going on. I feel terrible that I just couldn't hold my mind together long enough to respond. Even just writing this post has left me with a splitting headache, my arms are getting so sore from typing that I'm forcing them to move just to get this done, and the exhaustion is getting severe. I've wanted to post some simple pics of the Kiddos, but I'm afraid the best I can do generally are the bed pics.

 

I hope everyone has a happy (and safe) Thanksgiving or just weekend if you aren't American. Eat some of your favorite foods if you are able. I keep hoping if I take a nap that I'll have the energy to make some pumpkin pie I can eat, but if I asked a magic 8-ball on if it would happen it would simply reply "Seems doubtful." I already know that the activity and being round my family tomorrow is going to be severely taxing, so it's hard not to convince myself that it won't be much worse if I do 'just a little.' Even though a little physical effort for me anymore is very little. Picking up Tama makes my arms sore like most other people would feel like after a hard workout. I have just never gone a Thanksgiving without having pumpkin pie. I've already had more than my share of disappointments this year that if it just takes a bit more effort and dealing with the rapid consequences to at least have one thing familiar, it kinda seems like it's worth the pain.

 

Be safe. Be Happy. And love your Kiddos.

 

~Sister Kyoya

I'm so sorry to hear how hard you are struggling, especially with the medical community. Although it doesn't really "solve" the problems you are experiencing, I do know how much it helps to have an actual medical diagnosis rather than just the "it's all in your head" response.

 

When my husband was finally diagnosed years ago with chronic fatigue syndrome and fibromyaglia (long before these were actually recognized by most medical people), there was a huge sense of relief that someone was finally recognizing and validating what he was saying and what was happening to him. At the time, we had two children under 5 years old and every time he was told there was nothing really wrong with him, he had many of the same feelings you describe..."I must just be lazy...I guess I just don't want to work...I guess I'm just a lousy father...I just need to try harder"...and on and on with the same kinds of very negative feelings about himself just as you have expressed here. Because he had no visable, physical disability he also got a lot of negative and nonsupportive comments from friends (and even from those who were essentially strangers) which certainly didn't help his self-image! Eventually they found a medication that helped him cope with the day-to-day pain but he has never been able to return to work and never been pain-free since then. At least having a label helped/allowed him to deal with the doubters and nay-sayers. It also eventually became a bit easier as these conditions became more recognized by medical people. All of this said just to let you know you can "come out the other side of this" and eventually get to a place where you accept yourself for who you really are.

 

All I can say is hang in there and continue to push forward until you get full acknowledgement that this is not something you are just making up and until you get an actual medical diagnosis. That will help you to be able to be thankful for the good days and survive through the bad ones without blaming yourself! You are in our thoughts and prayers!

So good to see you around. Glad you have a little helper too. Glad you got some good news and now have something you can go forward with.

Again, so happy for you SK! And, I very much agree with Bouncing_Tigger:

 

All I can say is hang in there and continue to push forward until you get full acknowledgement that this is not something you are just making up and until you get an actual medical diagnosis. That will help you to be able to be thankful for the good days and survive through the bad ones without blaming yourself! You are in our thoughts and prayers!

 

*Hugs to you all*

 

Tamayuki looks so precious with that EpiPen. Kaylus is wondering if Tama can teach him so he knows how to use it on the kidlet.