Thursday, May 23, 2013
Here's a taste of what it's like to be me, for anyone who is interested in the symptoms of my multiple medical conditions.
Last night I got involved in a discussion on twitter while doing other things online, and I ignored my body yelling at me to eat. The discussion had me crying (complete strangers were showing me support) so I had no interest in food. This was a mistake. My body processed what I had eaten earlier more quickly than I realized, causing my blood sugar to plummet. Unfortunately, when my blood sugar drops very quickly into the 40s (which is where it is when I have symptoms), the symptoms are horrible. I am freezing cold, but I sweat so badly that my clothes and everything near me becomes soaked. I get the shakes and my body basically freaks out. This started happening last night. However, due to my gastroparesis (partially paralyzed digestive system), there's no way for me to really affect my blood sugars enough to stop the problem. Eating or drinking something sugary can actually cause my blood sugars to plummet even farther, as my body would increase even more insulin to counteract the food it is about to get. Therefore, all I can do is ride it out.
As I recently found out, Ehlers Danlos can cause inappropriate amounts of hormones and neurochemicals, including adrenaline, even if none should be released at all. Essentially, my body has a hair-trigger for releasing adrenaline, so even a small sound, smell, movement, or anything at all can cause a massive release of adrenaline, in addition to the possibility of it being released all the time in moderate doses. It's like my body is in panic mode at all times every day, and the slightest trigger can send it far beyond overdrive. Combine this with the fact that when blood sugars fall the body releases adrenaline to help force the body to survive while it tries to find stores of sugars to release.
So my body is freaking out from low blood sugar, I'm emotional from having a converstation, and my adrenaline is already a problem, yet more adrenaline and other hormones are released so quickly in high doses that every part of me simultaneously feels like it's going to explode and shut down. Up until a year ago, this would've made my mind freak out. Now I have to convince myself that there's something physically wrong with my body but it doesn't have to make my mind freak out.
For 6 hours I was on my computer (mostly doing PCH entries which require little more than mouse clicks) and watching tv shows I really didn't care much about, while I had non-stop adrenaline coursing through me. I was laying in a puddle of sweat, my entire body was shaking, I was nearly continuously reminding myself that 'this is a PHYSICAL problem, not a mental problem, so don't give in to all the horrible thoughts and memories that are flooding my brain making me hate anything and everything that's ever happened to me', and every few minutes I would get a jolt that made me want to get up and pace or move around or do anything that will get the tingles and stabbing pains in my body to stop. However, with the constant pain I'm in, the high risk of blackouts and fainting I have due to my blood pressure and heart rate problems, and the risk of dislocating any joint in my body were I to have a sudden shake or spasm while I was walking causing me to lose my concentration or balance, getting up and moving is the last thing I should have been doing. Still, sometimes I couldn't stop myself and I'd get up and move then convince myself to sit/lay down again in a few minutes.
Within these 6 hours of having a complete lack of control over my body, I took the meds I needed to take before going to sleep. Yet 3 am came and went and I couldn't imagine closing my eyes (when my body is freaking out like this closing my eyes can make everything worse), and my allergies were freaking out along with everything else, so I could barely breathe. I took a prescription allergy medication that I usually reserve for when my allergies are really bad, because it tends to knock me out. I figured it should help me be able to breathe again and help me fall asleep. Finally around 4:30 am I fell asleep.
At 5 pm I woke up. I knew I had had a fitful night of sleep, though I couldn't remember any of it. My body was sore, I was extremely exhausted, and all I wanted was to fall back asleep. Unfortunately, I'm out of one of my medications so I had to wake up enough to run out and pick it up. I had no interest in food, my body felt like I was covered in cement, I felt like I was trying to breathe through kinked straws, my head was so foggy I could barely focus enough to turn on the tv, and my mind just kept screaming at me that nothing is worth me being awake. I grabbed some cookies that were on the table to munch then laid back down on the couch (which is my bed - if I was in my bedroom downstairs I would never had made it up the stairs for food or for anything else). Finally around 7 I started forcing myself to move around, throw on some clothes, and at 8 I left to drive the mile to pick up my meds. By the time I got back at 8:30 it seemed like too much to make it up the stairs, get off my clothes, try to eat a little something (a few strawberries w/ cream cheese, followed with eating Pops cereal out of the box so I can lay down while eating). By 10 I was feeling like I was in hell being tortured. The physical symptoms are wearing me down and the depression is hitting me extremely hard, as the screwed up hormones and neurochemicals are in strange states of still continuous bombardment and/or so depleted there's nothing left when I need them.
As I lay here right now, every part of me hurts. Every muscle and joint aches like I've been running and exercising non-stop for days. My eyes are burning like they're on fire or coated with acid. My heartbeat can be felt throughout any part of my body that isn't numb, to the point that it's actually distracting. No matter how hard I breathe it feels like I can't catch my breath, and taking a deep breath feels like cement blocks are sitting on my chest ready to crush me. The depression is horrible, bringing thoughts into my head that would make the happiest person in the world feel completely worthless. My body is screaming at me that it must sleep, right now, no excuses, but my mind wonders if I fall asleep right now will I ever wake up - and should I even care if I wake up, considering if I don't I never have to feel like this again. But through all of this I have to keep telling myself that this is a PHYSICAL problem and I don't have to listen to the depression. The mental health problems I have are always there, but they do NOT have to jump on the bandwagon with the PHYSICAL problems. I MUST keep them separate.
This is what my life is like. This is what it is to be me. I face it alone. The doctors seem absolutely clueless, my family is completely screwed up and unwilling to help me in any way (except that which will benefit them), and I have no one who can come to my house to take care of me at times like this. I'm the only person I can count on to always be here.
I am terrified. My diagnoses are not good ones to have, because they just get worse. There's no easy fix, no hard fix, even difficult treatments are almost impossible to get. As I get worse, there's no one here to say 'let me do that for you', 'you can lay there as long as you need and I'll take care of everything', and no one here to even give me a hug (which would help my body release some happy hormones to counteract all the horrible ones being flooded through my body). If I can't get up to get food, I don't eat. If I can't get up to get water, I go thirsty. If I can't get the energy to vacuum for a few weeks (like lately) then my allergies flare out of control (like they are now). If I can't force myself to get out and pick up the items I need (like medications) then I don't get to have them. And when all the hormones and chemicals in my body are screaming at me that life is not worth the torture, I'm the only person who is here to try to be positive.
I'm sorry if I made you feel bad because you read this. I'm sorry if you pity me now or if somehow you feel I've permanently damaged your life by telling you about the last 24 hours of my life. I'm sorry if you feel I'm not good enough to be around you on spark (I've had enough people attack me or abandon me here that it won't destroy me if more do so).
This is me. This is my life. I don't expect anyone to understand what I'm facing. But here it is for anyone who wants to read it. If you've made it this far, give yourself a pat on the back - you deserve it.
Wednesday, May 15, 2013
Before I get to my blog, I want to say I'm very thankful for the comments on my last blog. I was honestly worried that I would get a lot of hate and backlash for posting about my joy, but I was pleasantly surprised at all the positive comments. Anyone who doesn't agree with me, I hope you find peace with your opinions as I have found peace with mine.
Now on to my blog...
Talking with my ARMHS worker today helped me come to a realization that I've had inklings of for the last few years but never really put together until I talked it out with her.
My medical conditions have physical side effects that cause mental health problems such as depression and anxiety. (For example, most of the serotonin - a feel good hormone - is in the digestive tract, so having a malfunctioning digestive tract will inhibit serotonin and cause depression. Also, having my blood sugars sometimes plummet into the 30s and 40s - which would make many people unconscious - forces the body to release hormones that mimic the fight or flight response, leading to extreme anxiety and even panic attacks.) This means I'm pre-disposed to mental health conditions, and it is due to a PHYSICAL issue and thus not within my direct control. I can't force my body to release hormones and chemicals properly. Because most of my conditions are incurable, untreatable, and/or I've failed treatments, this means I will always have to deal with depression and anxiety in one way or another. It also explains why mental health medications only make things worse and/or do the opposite of what they are supposed to do, and why I can go through multiple cognitive treatments and know all the 'right' things to say and do but it doesn't help much either.
My PHYSICAL issues are causing mental health issues. Due to the severe lack of support I had growing up, severe bullying, and a whole lot of screwed up crap, that worsened the effects of the physical issues I've had since I was a baby, when the mental health problems arise, my brain kicks it into overdrive and essentially drives my hope and optimism over a cliff. This causes a downward spiral that continues for hours or days. It's essentially a catch-22: the physical causes mental causes mental causes physical... so without addressing what starts the problem it will never change.
The irony here is that the physical doctors are trying to cut and run saying the mental health issues cause the physical issues (which is absolute crap). The mental health doctors tend to give up because every treatment they try will fail at addressing the underlying physical problems. So I'm stuck having to address this on my own.
Starting today, I need to do things differently. I understand FAR MORE about the physical causes of my mental health issues than any of my doctors, so I need to pay attention. I need to identify when they symptoms are occurring and ALLOW THEM. Just feel all the crap instead of trying to stop it like the doctors want me to (or hide them as I was forced to do growing up). Then, as the feelings ease, distract myself with something so the follow up mental health doesn't come charging in and taking over. Essentially, I need to acknowledge and accept that I can't stop the depression and anxiety that comes from the physical issues I have. They will always be there; BUT, they are temporary symptoms that last only while my body is having its temper-tantrums (such as when my nervous system goes haywire, when my pain level goes sky high, when I blackout and go unconscious from lack of blood to my brain, when my blood sugar plummets, when my digestive system doesn't want to work, a direct link between TOM & a huge increase in depression that could be PMDD, etc). I can't control the physical. I CAN control the after-effects where my brain takes all that bad, snowballs it into a mountain, then explodes it into an unending mess of horrible-ness.
I know this is going to be crazy difficult for me. I have to tune into my body even further and find the line where the uncontrollable physical symptoms end before the controllable mental health issues start. I have to dive into the emotions that are forced upon me, then step out of them and into an intellectual mindset where I can figure out what is physically happening to cause them. I can tell you this is going to suck because I have to totally retrain my reactions. But it is something I must do. The doctors can't do anything and keep giving up, so it's up to me now.
I'm not posting this to endorse anyone else trying this. In fact, PLEASE DON'T. I'm painfully unique and have spent hundreds of hours researching my conditions, have been through years of trying dozens of conventional treatments, and I am embarking on this quest under the supervision of my ARMHS worker.
I've posted this blog for accountability. I also have memory issues, so I want to be able to remind myself of what I'm trying to accomplish by doing this. Hopefully my sparkfriends will also be able to gain some understanding about why I am the way I am, and forgive the times I'm silent, negative, and/or fall short of what someone might expect of me.
Monday, May 13, 2013
This blog is going to be a bit controversial. I am not posting it to start an argument or to put down anyone else. My beliefs are my own and you are welcome to yours; I just hope that we can agree to disagree and have respect for each other. That being said, I am posting this blog from a state of love, respect, and appreciation. Any responses that are disrespectful or demeaning will be deleted. Responses that are opposite of my views but are respectful are okay.
Now that I've gotten the disclaimer out of the way, here is what I want to talk about.
Live and let love. This is what I believe. If someone is coming from a place of love and respect then they will wish the best for others, even if they disagree with them. If a person is coming from a place of hate and prejudice, they will expect that their views should define others' lives and wish horribleness on anyone who disagrees. We can disagree on others' actions while still wishing the best for them.
I believe women deserve the same rights as men. I believe rights shouldn't be determined by skin color. I believe disabled & differently-abled people should be allowed fair chances to succeed just as 'normal' people. I believe GLBTQ people should be allowed the same rights as straight people. I believe in civil rights. We don't choose the sex we're born with. We don't choose our race. We don't choose how our well our bodies will work or what our natural talents will be. We don't choose what traits we're naturally attracted to, whether it's legs, chest, abs, butt, eyes, or whether they're male/female.
Today, I am proud to be a Minnesotan. On Thursday, the MN House approved a Gay Marriage bill. Today, the MN Senate approve the bill. The governor will sign it tomorrow at 5 pm. Starting August 1st, 2013, gay marriage will be legal in Minnesota. We will be the 12th state to legalize gay marriage and the 1st in the midwest to do so with legislation instead of the courts.
If you have ever asked a gay person "when did you choose to be gay," try asking yourself "when did I choose to be straight?" Unlike most people, due to unique experiences in my life, I have spent a lot of time asking myself about my sexuality. I see beauty in many types of people and I don't like to immediately exclude anyone from my definition of 'attractive' due to sex, race, abilities, etc. I want someone to love who loves me, so I need to be open to love. I want to find a man to love; I also want to believe in the love of everyone.
There is so much I could say on this topic but I will leave it here. I wanted to express my joy at the success of this bill and I have done so. I hope many others are joining me in celebration and those who are against this bill will find peace and acceptance as they experience no harmful effects of this legislation.
Friday, May 10, 2013
For my fellow Twin Cities metro and western Wisconsin Sparkers, I'm going to share with you some inside information. I'm not someone who normally does 'ads' for services to convince people to use them. But I am this time because I have great appreciation for this guy. He has no idea I'm doing this, and he deserves the recognition.
Anyone in the area who needs a plumber, consider calling St Croix Plumbing & Drain Cleaning. Todd Jadwin is the owner and he is a wonderful guy who really puts his heart into his work. He's done several jobs in my house and he has never once let me down. He's accredited by the BBB. He also has tons of great reviews online, so I know I'm not the only one who calls him for all plumbing needs!
St Croix Plumbing, Todd Jadwin
Disclaimer: I am NOT getting any reimbursement for this posting. He doesn't even know I'm doing it.
The work he has done for me:
Removed and replaced improperly connected pipes under my kitchen sink & adjusted connection to garbage disposal that was being damaged by the previous owner's error
Corrected housing code violation for tubing of sump pump water, including exterior modifications and insulation of the new pipes
Emergency phone call for broken water softener after improper installation caused the connections to explode and spray water everywhere; I didn't replace the softener so he connected the pipes together, making it easy to install a new one in the future
(Today) Removed broken faucet in shower/tub by removing & replacing copper pipes, reattached new faucet
Every job was done well and I have not had any further problems, though he always reminds me he's only a phone call away should a problem arise. I'm confident in all of his work and very glad I happened across his reviews online when I needed him!
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