1

My Body, My Choices

Bodies are complicated things. No two are alike and the different combinations of things means that even when there are similarities in diseases/symptoms, how they interact with each person can vary wildly. However, that doesn’t change the fact that what we each have going on affects how we deal with the world. And each of us individually knows our bodies and interactions better than anyone else. I want to share what MY body is like and how it affects ME every day. I figure I’ll just start at the top and work my way down.

MY BRAIN
Problem
: My brain isn’t wired to function in a neurotypical society – ADHD, depression, anxiety, insomnia
Effect: Working in traditional 9-5 jobs without flexibility is a nightmare. Without medication, I have trouble focusing for any length of time, I am easily distracted, and often forget what I’ve just said or just been told. I grew up believing that to be loved and accepted, I needed to accept that things were my fault, that monetary success was THE key to happiness, as is thinness and conforming to beauty norms. My depression and anxiety feed off this and send me messages, every day, that my inability to be neurotypical means I’m a failure. That my physical ailments, over which I have little control, have left me in a position where I will *never* be successful or happy. I take two antidepressants, an anti-anxiety medication as needed, and a medication for the ADHD so I can focus. I also have trouble falling asleep – my brain races and will not let me fall asleep, no matter how physically tired I am.

MY FACE
Problem: Deviated septum, maxillary sinus blockage, turbinate hypertrophy
Effect: Inability to breathe well through my nose, chronic sinus infections, poor quality sleep. Sleep is when the body and brain have a chance to recharge and heal. Because I can’t in oxygen, I get crappy sleep. Crappy sleep means I don’t heal. Additionally, it makes running and other cardio exercise difficult. I just had surgery to correct these problems, but I am still in the recovery period.

MY IMMUNE SYSTEM
Problem: My immune system mistakes my healthy tissues for invaders and attacks – Lupus, Hashimoto’s thyroiditis, Type 2 diabetes
Effect: Probably the biggest and strangest thing is that I am basically allergic to the sun. I develop a rash on my face which eventually feels like it’s on fire if I don’t remove myself. Repeated sun exposure also leads to rashes on my arms. The sun is a source of Vitamin D which gives us energy. I have to take a supplement to get to normal levels. More annoying than being allergic to the sun is the constant fatigue. The thyroid regulates a ton of the body functions through thyroid stimulating hormone. My body thinks that my thyroid is an invader and attacks it, causing pieces of it, with the hormone to dump into my body. This causes all sorts of fun problems like menstrual irregularities, fatigue, feeling too hot, not being able to cool down once I get warm. I’ve had to alter my diet to avoid overloading my body with sugar which can cause fatigue and brain fog. Lupus also causes small joint pain in my fingers and toes.

I’m pretty sure that the root of many of my problems is Lupus, which should have been diagnosed when I was younger. It causes reactions to antibiotics that appear allergic, but aren’t. I had such a reaction at 4. I think had it been diagnosed, I may have been able to get treated earlier (instead of starting last year) and I may have been able to avoid the thyroid issues and diabetes. There is also some concern that my kidneys are being affected.

MY MUSCULOSKELETAL SYSTEM
Problem: A developmentally narrow spinal canal and nerves that don’t fire appropriately – Spinal issues and fibromyalgia
Effect: Widespread body pain that comes when it feels like and stays as long as it likes. This includes pain in my upper back, shoulders, wrists, hips, and knees. It can be triggered by stress, food I consume, and trauma (like surgery). Because my spinal canal was small, when I herniated discs, I was in extreme pain as they pressed on nerve roots. This led to two back surgeries, the second of which was a spinal fusion in the lumbar region of my back. I still have some lumbar issues and have pain on certain activities. Additionally, a complication of that surgery was that I woke up with foot drop, the inability to pick up my foot. Bad physical therapy further damaged my leg. This led to a tendon transfer, which gave me the ability to pick up my foot, but has probably caused hallux rigidus in my big toe so that it doesn’t have the range of motion it used to. I also have nerve damage so I cannot feel most of my big toe on my right foot or my second toe. I also have joint pain in the metatarsals of my right foot. I take an antidepressant to subdue the widespread body pain and occasionally other medication for acute joint pain. Fibromyalgia also causes stomach issues like IBS. I have to very careful what I eat lest I have a horrible stomach reaction.

MY REPRODUCTIVE SYSTEM
Problem: Irregular menstrual bleeding and hormone issues – uterine polyps and endometrial hyperplasia, PMDD
Effect: From about 2002 until I had my uterus removed this year, I had irregular menstrual bleeding. This was prolonged periods and/or heavy periods. Sometimes I bled 20+ days/month, another time I bled straight for 90 days. This is challenging to deal with mentally and physically. Never knowing when you may start bleeding and how strong it may be makes planning things difficult. I would go to the bathroom at work to discover that I had ruined yet another pair of pants. Additionally, I have PMDD, which is essentially PMS on steroids. It affects people different ways – I get slammed with major depression and anxiety. I hoped that having the hysterectomy would lessen the effects, but that hasn’t been the case.

So you’re thinking, okay, but what does that really mean in terms of your life? Best thing I can do is run you through a typical day.

11:30am-1:30pm: Wake up. Feel bad about having slept so late and letting the day get away from me. Think about how I will never really be a financial contributor to my household if I can’t manage to get up earlier and be more productive. However, body is wiped out and still doesn’t want to get out of bed, even though I am awake. It usually takes me 20-30 more minutes to get up and moving. Also, I probably didn’t go to sleep until 3am or 4am and woke up several times in the night, so even though I’ve slept many hours, I’m still fucking exhausted. I do not feel refreshed.

I drag myself out of bed and take my thyroid medication. It needs to be taken 30 minutes before I eat anything else. I then think about what I’m going to eat. My stomach is usually pretty sensitive when I wake up, so I debate for a while what I can eat that won’t make me feel sick. Sometimes I eat, sometimes I don’t.

I hop on the scale to see where I’m at and how my body is processing what I’m feeling these days. Lately I’m down in weight because the surgeries ruined my appetite. Regardless, I see my stomach in the way of the numbers on the scale and reflect how fat I am. Now not eating anything doesn’t seem like the worst idea.

Since I’m still tired, I get back in bed with my laptop and check email and social media. Since I currently do direct sales and work from home as a lawyer, I handle those emails. Unfortunately, I get distracted by 17 other things and can’t remember what I started out doing. Eventually I remember, but beat myself up for getting distracted in the first place.

Mr. Lyndsy comes home for lunch and I feel bad that I haven’t made him lunch, done the dishes or anything else related to the house. I know that after the surgeries I’m not really supposed to, but since I’m the one who is in the house all day, I feel responsible. I do know that he’s an adult and can handle making his own lunch, but like I said, I feel bad that I’m home all day, making very little contribution to our finances, so I *should* be doing more around the house.

I see doctors pretty regularly, especially since I currently have some surgery complications and follow up, so I throw clothes on and head outside, praying the sun is hiding. It’s gotten cooler here now, but I get warm with a lot of movement, so I hope I’ll be okay. During the warmer months though, simply getting from the apartment to the Uber makes me hot and I take hours to cool down. This takes longer if I’m out grocery shopping or moving a lot. My body is usually in some form of pain at this point as well. Sitting for any length of time causes lower back and hip pain. My stomach may be aggravated as well, so I’ve probably made several trips to the bathroom. These days though, I can’t tell when I need to poop, so it happens after I’ve started experiencing some type of stomach discomfort.

Once I’ve finished whatever I’ve been out doing I am usually worn out. I started the day exhausted and fatigued and nothing I’ve done has lessened that any. I am grateful to get home and crawl back into bed. I wait for Mr. Lyndsy to come home. He is usually home around 6pm, which is our dinner time. I realize I haven’t done anything to prep dinner. He’s also usually pretty tired, so we end up not actually making anything and either ordering out or eating something like a sandwich or just crackers. Yesterday, for example, I ate yogurt for breakfast, pineapple for lunch/dinner, and rusks and cookies for a later dinner.

Mr. Lyndsy usually falls asleep around 9pm. He’s up early and since he also sleeps poorly is pretty constantly fatigued. By this point in the day I feel pretty bad about myself. I have done nothing to contribute to the household. I’m tired. I’m in pain with a sinus headache, body pain, I feel too warm. Yesterday was a banner day because I was also emotionally done. The PMDD was in full gear, exaggerating all of the usual depressive and anxious messages about my lack of self-worth and inability to provide value to the world. This is when I start to serious consider that perhaps I would be better off not living anymore. I hurt all the time, I don’t provide value, and there doesn’t appear to be an end to it. Why live like that? Is that really living? Maybe it’s time to just let go.

That may seem like an extreme reaction to you – after all, this stuff isn’t my fault. I don’t make my body attack itself. I don’t control the wiring in my brain. The problem is that I remember I lived a different way. At one time in my life, I felt like a fucking rockstar.

I USED TO BE A BAD ASS
In my last semester of law school I worked as an extern at a large prosecutor’s office. One of my professors was an adjunct faculty member and he was a senior deputy prosecuting attorney assigned to their homicide division. He encouraged me to do the externship and work with him. At the time I didn’t have any interest in practicing law, but 4 credits not stuck in a classroom sounded like BLISS.

Well, it was the perfect match for me. The prosecutor was so impressed with the work I’d done as an extern that he convinced the elected prosecutor to hire me for a job that didn’t actually exist. He was prosecuting a quadruple homicide at the time and it was a capital murder case. He wanted MY help with it. Yes, me. A 24-year old who just graduated. To put it into context, he hated trying cases with anyone. He only did it if the office made him. So, that’s a massive compliment to me. The elected prosecutor agreed.

For the next three years I worked a ridiculous number of hours on the case. I was a full-time graduate student during 2 of the years. I know at one point I worked 28 days straight, probably 10 hours per day. Otherwise I maybe didn’t work on Sundays. I worked alongside local police and fire departments, the state patrol crime lab, leading DNA experts, and an ATF task force.

And I wasn’t just an errand girl. Yeah, sometimes I ran and got coffee and lunch. But after the jury returned its final verdicts (guilty and for the death penalty), we chatted with them. Turns out some of the evidence they found most compelling was evidence I’d uncovered through research or things we discovered because of an insight I’d had. (For example, by reviewing photographs of the defendant, I realized that some of the injuries on his neck weren’t scratches, but were ligature marks left by someone pulling on his chain necklace. The necklace was sent for DNA analysis and the DNA of one of the victims was found on the chain.) Don’t get me wrong, it wasn’t that I’d single-handedly done anything. My boss is a master in trial. He had the vision, I just helped him execute it. He’d tell me he wanted the evidence presented in a certain way, and I found a way to make it happen. After it was all said and done, he said he couldn’t have done it without me.

AND NOW
I can barely get out of bed some days. I have trouble focusing long enough to read a book and follow it. I can barely do 8 hours awake, let alone 8-10 hours of work and travel. I fight the demons in my head most days. I don’t feel like I add value to the world.

There may come a time when I decide I’ve had enough. It will be at a point where it’s clear that things won’t change or will only get worse. People often think that a person’s choice to end their lives is a rash decision. At least for me it wouldn’t be. I know what I was and what I am now. I know what feels like living and what doesn’t. No one else gets to make that call for me. Also, there isn’t anything that someone could say or do that would affect my decision. I live in this body and mind every day. I know that when it’s done, my energy will return to where it came from for someone else to use and change the world. That’s okay with me.

1

Out of the Suicide Spiral

As you read earlier this week, my weekend was… NOT GOOD to say the lease. That’s the worst I’ve been in a while and I would rather not get anywhere near that again. My shrink is changing my meds up some and she gave me a list of 10 Forms of Twisted Thinking so that I can identify the shitty thoughts and recognize them for what they are.

Of course, that assumes that I don’t already know the thoughts are fucked up when I have them – I do. It’s just that I can’t control how fast they come and spiral.

BUT, as I was crawling out of the spiral on Sunday night, I had an excellent conversation with a very good friend about depression and why I struggle with it so much. She said what a lot of people say, that depression is a liar. A light went off in my head. I thought of something else everyone calls a liar, or rather The Great Deceiver – Satan.

Which led me to one of my derailed trains of thought. I won’t get into that in its entirety because 1. I can’t remember it i full and 2. It doesn’t really matter. The conclusion I ultimately reached is that the depression is trying to get me to stop shining my light in this world and stop me from fulfilling my role in the larger universe.

The reason this is important to me is that most often I’m not willing to do something for my SELF. Typically I just don’t care enough. Bad things happen to me. Boohoo. Okay. I deserved it. It’s karma. Whatever. But, when something affects OTHER PEOPLE, I have a problem with it.

People have told me that I’ve helped them through things. That something I shared with them mattered. That I affect more people than I know. I have a problem with depression trying to take that away. THAT is not okay.

So now, I have a reason to fight. To not just let go when the spiral forms beneath me. I will see that black hole and tell it to go fuck itself. I have people to help.

Stop telling us what to do

You care, I know you do. I appreciate that you care.

However, you need to find better ways to show how much you care. Telling me what to do, what I should eat, how I should move, etc. is not the best way to show me how much you care.

You think you’re helping. You’re not.

I’ve seen more medical professionals than I care to count. I have had to fight with them to even get diagnoses, to get treatment that would make me feel even a little bit better. I have spent countless hours researching my condition online, consulting with Dr. Google. Looking for alternative treatments, new things to try, talking to people who have fought this battle before me.

Chances are good that you aren’t a doctor or even have any medical training. You know someone who knows someone who has the same thing and some random root from Chile helped them. Or maybe they gave up all sugar and only eat broccoli and avocado now.

I’m glad that worked for some random person I’ll probably never meet. I love hearing when people who struggle like I do get better. No one should have to deal with the things I deal with. Chronic pain. Brain fog. Depression. Anxiety.

But, I need you to respect the fact that I’m on the path I’m on. You telling me over and over to stop eating sugar doesn’t add anything useful to my life. Instead, I feel like you think I don’t know how to take care of myself. Like I haven’t talked to the doctors. Haven’t researched. Haven’t tried to figure out what’s best for me. You don’t know what’s best for me. Stop acting like you do.

You also may be ignoring the fact that I could be going through a rough patch. One where I’m struggling to get up everyday, so we should just be glad I’m eating at all. You’re probably not with me 24/7, so there’s no way for you to know what I put into my body when you aren’t around. Don’t assume that what you see is my whole life.

Because the reality is that there are probably very few people, if any, who really get the full picture. Who see me when I struggle to wake up and get out of bed. Who see how I struggle to walk through a grocery store or how sometimes breathing is painful. Who know how many voices in my head tell me I’m a failure. That I should be doing more with my life than I am. Over and over I hear, “You’re not really sick. Get up. Get moving.”

Until you’ve actually trudged a mile in my shoes, or spent a whole day in bed because the pain is pretty much unbearable, please do not bestow your unwanted advice on me. For some of you, it’s a compulsion. You feel like you *have* to share with me because you know it will help. You won’t feel like you’ve done your part until you do.

Just stop. Ask me how I’m feeling. Ask me how you can help. Tell me something funny to get my mind off of whatever I’m going through.

If you can’t stop, you may soon find your way out of my life. I spend enough energy dealing with shit, I don’t need it from anyone else.

4

The Kid I Cannot Have

I recently decided that I do not want to have kids. I resent that I had to make that choice.

You may be wondering, “If she resents it, why did she make that choice?”

My 35th birthday is in a couple of weeks. The statistics about pregnancy after that age are readily available and definitely not positive.

But that’s not why I don’t want to do it.

Mr. Lyndsy has pretty great genes. He’s 35 and in good health. He broke a vertebra in his back and an old ankle injury gets him sometimes, but he spends his days in activities with kids who are twelve years old and does pretty well. He still plays sports. His father is in his 60s and still VERY active. He’s smart. He’s funny.

I’m smart. I’m funny. But that’s where the good stuff ends.

I was born with a bad back, or so said the neurosurgeon who fused my spine. Even now I still have back issues, just located in a different place. I have chronic pain in my foot from the nerve damage and tendon transfer.

I have Hashimoto’s which causes my body to ebb and flow through periods of almost manic energy and then into a state of fatigue. I’m lucky to have an endocrinologist now who was willing to treat it with medication, but it took going through three doctors before him.

Even with the Hashimoto’s treated, I have to contend with fibromyalgia. Random flares of body pain and bouts of fatigue so oppressive I don’t want to get out of bed. When you do finally get out of bed to do something, brain fog kicks in and you can’t remember why you up in the first place.

Of course, that’s not the only reason I don’t want to get out of bed some days. Depression and anxiety also like to jump into the fray, further knocking me down. The commercials that say depression has a physical component aren’t kidding. The body aches and fatigue are on top of feeling like your soul has done a round with Mike Tyson.

Diabetes can be a result of lifestyle choices. But sometimes, when your body is under attack from a bunch of other shit, diabetes gets you anyway.

For shits and giggles my kidneys leak protein. They aren’t supposed to. We do not yet know why it happens.

Perhaps my favorite is that I seem to be allergic to the sun. Prolonged sun exposure (as little as 30 minutes) results in a butterfly rash across my face and bumps down my arms and into my hands.

I have walked on the edge of the ultimate blackness. Been in that place where dying seemed like a much better idea than living. I managed to walk away from the desire, but my kid may not be so lucky. And it hurts because I know that all of my love wouldn’t be able to save him or her from that edge.

I don’t want that for my kid.

I had 15 doctor appointments in one month. I had blood draws for probably 40 lab tests. I spent a lot of time going to and from the hospital for those appointments. I have spent 9 nights in the hospital. The place where you’re supposed to get healthy, but health is impossible when you can’t sleep because someone is coming in every hour or so to make sure you’re okay.

I don’t want that for my kid.

There’s a long ass list of foods I don’t eat anymore because they upset my stomach. I can’t eat some of my favorite treats, unless I’m willing to risk an explosion of diarrhea at the worst possible time.

I don’t want that for my kid.

Standing, walking, and sitting cause pain. Running is out of the question. Sports don’t happen. Theme parks require sunscreen and a hat, and even then my face feels like it’s on fire and my arms look like something out of a sci-fi movie.

I don’t want that for my kid.

So I won’t have one.

I feel like I’m making the choice any good parent would make.

That doesn’t mean I like it.

I resent the hell out of it.

But it’s the choice I have to make. For my kid.

 

Wow, I have not been here for a while. I haven’t figured out what that says about what’s going on in my life right now. Either I’m busy and haven’t had time (seems not quite right) or I’m avoiding something (also doesn’t seem quite right).

I have been super busy lately. Being in a place where you’re surrounded by people you know and can access things like fun shopping and the gym easily means less time staring at walls. I’ve been hitting the gym 4-5 times per week which has been so good for my body. I feel strength I haven’t had in a long time. I’ve developed muscles in places I didn’t know you could have them. Shoulders have muscles? What?

Probably the best part about it has been the discipline I’ve exercised. I’ve talked before about how I struggled with discipline. I just cannot get myself to develop good habits. I do fine for a while and then the wheels fall off. My gym activities have been helped by the fact that I have a gym buddy. She’s using my guest pass to go to the gym, so I feel like I should show up so she can go. She comes because she knows I’ll be there so she can go. It’s working out well enough now that I think I’ll be able to continue it on my own.

 I need to work on developing better habits in the rest of my life. It’s almost 2:15am as I write this and I’m still awake because I totally failed at taking most of my meds on time today. Got the pill I take when I get up and… that’s it. When I don’t take my meds on time, things are not good. I feel joint pain. I don’t sleep. I have to get better.

I also know that there are other areas of my life (read: flossing, sorry J), that I’m terrible about too. It’s largely things that would make me healthier. The bad stuff is so much easier to do because we can accomplish it by doing nothing.

When I started thinking about what I could do to make myself be a better about healthy habits, I was thinking from the point of a reward system. How could I reward myself for doing the shit I’m supposed to be doing anyway. But now that I’m writing this, I’m irritated at myself.

For the things that are good for me, I should do them because I know that doing them will make me healthier. Health should be its own reward at this point in my life. The other part of the problem is how I would reward myself. Cake and other goodies that I would normally consider aren’t things I should be eating now anyway. Also,  I generally buy what I want when I want it (perhaps this is something I should be working on as well…) so there’s no saving up good behavior credits for a special something.

So, I have to suck it up and face the fact that sometimes in life, I just need to do something because it’s the best thing for me to do. I can’t expect to get a reward every time I do something I *should* be doing for myself. Chris Rock has a skit about it – I won’t mention where it comes from here, but if you’ve heard it, you’ll know what I’m talking about. He’s talking about people want recognition for things they should just be doing like, “I ain’t never been to jail!” Response, ” What you want? A cookie? You ain’t supposed to go to jail…”

I am a very visual person so I am going to track and monitor how well I stay on track with the things I should be doing. The plan is to have a calendar that I hang up where I can easily see it as a reminder. For this month, I’m focusing on three things and will give myself one star/sticker per day for each of the following:

  1. Take all of my meds ON TIME
  2. Brush my teeth twice/day, floss, mouthwash
  3. Meditate for at least 5 minutes

I already screwed up today, but since I just came up with this plan, I’m going to give myself a “N/A” for September 1.

What kinds of things do you feel like you could be better about? What do you think keeps you from doing what you feel you should?

1

Ripple Effects of Depression

I have a big personality. Anyone who has ever met me in person and maybe even some people who have only met me online will tell you that. When I’m joyful and happy, it’s infectious. When I’m down, it’s like a raincloud covers everyone around me. Depression blocked any recognition I may have of this. Now that I’m coming through the other side of the tunnel, I can see how depression affected people around me.

For months now Mr. Lyndsy has seemed down and upset. I know he’s been having a stressful time at work. He essentially has been doing two jobs for the price of one. I assumed it was that and let it go.

However, over the last week or so as I’ve really started to feel better, he’s seemed lighter and happier too. It was only yesterday that I acknowledged there could be a connection between how I was and how he is. Obviously people who live together affect each other, but from my opinion, this seems to have gone beyond that. I know he hates to see me in pain. All he wants is for me to be healthy and happy. So if I’m not, it bothers him.

It was just so much worse than I thought it was. His light is shining brighter. He’s less irritable, more ready to laugh, and generally easier to be around.

It’s not like I could have known in advance that this would have affected him so differently and I don’t blame myself for his moods. For me this is incentive to stick with my meds. His happiness and wellbeing are of paramount concern for me. Now that I know how deeply affected he is by my emotional state, I want to make sure I do everything I can to keep our lives as happy as possible.

Clearly I want it for myself individually. But I chose him. I chose to be a part of his life and accepted that things I do can affect him too. I have a responsibility via my vows to him to make sure I’m the best partner I can be. He deserves that much from me. I know he feels the same way and has that same sense of obligation to me.

I’m keeping a journal about all of this so in case I forget I can go back and remind myself. Constant vigilance is my friend. If you see me and think something is off, please tell me. I appreciate that you’re looking out for me and won’t take any offense.

As always, thank you for your continued support.

4

Should have done it sooner. Get the help you need.

About a month or so ago, I started seeing a shrink. The increasing and widespread pain I was feeling pushed me to an edge I didn’t like. I simply couldn’t deal with anything anymore. I couldn’t see wanting to live if I was always going to be in so much pain and there wasn’t going to be an end.

The shrink told me to stop thinking in such long and broad terms and do what I can to get me feeling better. Find the pain meds I need. Sleep. Journal. And she gave me a prescription for Cymbalta and another antidepressant to help me sleep. That sleep one has been changed to something new and I think it’s better. I’m waking up early and I feel like it’s too early, but that’s probably just been more because of what I’ve been used to. I’ve found I feel more awake during the day if I get up instead of rolling over for a few more hours.  I do need to try to get myself to bed earlier though.

What’s been the biggest thing though is how much better I feel emotionally. I care about things again. I don’t want to just sit at home and read. I’m interacting again. I’m taking better care of myself. I hit a point where I said if I felt this bad I would do whatever it took to make me feel better. Now I’m finally living that. I’ve completely changed my diet. I take a million meds, but I’m committed to them. I’m following through with doctors.

It’s a million miles from how I felt a month ago. I’m enjoying things. I realized the other day that I want to live.

My endocrinologist said that depression is a chemical imbalance and we shouldn’t hesitate to treat it like we would treat hypertension, diabetes, or anything else that might be wrong with us. I didn’t really need to hear him say it since I’d already gotten there, but it’s nice to have a doctor who understands.

If you are depressed, don’t wait as long as I did. I have had serious problems since 2008, but I believed I could handle it all myself. I figured if I knew what was up and found a way to deal with it myself that I would be okay. But it wasn’t okay. I had periods where I was okay, but there was always this darkness that seemed like it was waiting for me.

I’m not under any delusions that everything is okay now. I know that I need the meds to help me. I still do exercises to focus on being in the now and not getting stuck in cycles of anxiety. I have to be vigilant about my health.

But, please, please, please get help if you need it. If you need to talk, reach out. I’ll listen. If you even just think you may need it, seek it out. I know how hard it is to make that step and reach out. But once you do it, things will get better. Maybe not right away but over time. YOU are worth that investment.

Thank you to everyone who’s cared and been there to support me over the years. It’s appreciated more than I could ever express in words on this page or anywhere else.

Is winter over yet?

The short answer: No.

I’ve been in hibernation virtually and in real life for a while now. Got off Facebook for the most part, stalking Instagram but not posting much, skipping out on local events. The thing is, I’m tired. #spoonielife is hard. A lot of my time recently has been taken up by doctor visits. Since early March, I’ve seen a rheumatologist, gastroenterologist, nephrologist, endocrinologist, psychiatrist, and orthopedic surgeon. I’ve had vials of blood drawn for 40 different labs, 2 24-hour urine collection samples, a regular urine sample, and a fucking stool sample. I am determined to figure out what the hell is wrong with me – my stomach, why I’m so fatigued, the pain in my back and foot.

There’s been some progress and some stagnation.

Progress
The rheumatologist diagnosed me with fibromyalgia. I’d suspected that for a while, but knowing that I’m not fucking crazy for thinking it is particularly delightful. Unfortunately, he wouldn’t give me any meds for it due to some kidney issues.

That turned out not to matter because I went to see a shrink to deal with the continued despairing thoughts I was happening. Those led to anxiety. I couldn’t deal with it anymore. I just wanted to cry all the time. I couldn’t deal with it anymore. The depression was killing me. The shrink is nice and is definitely invested in helping me feel better. She put me on Cymbalta, which will deal with the mood stuff, but is also used to help he chronic widespread body pain associated with fibromyalgia. There aren’t words that would accurately convey how happy I am that the fucking pain is mostly gone. It was making me insane. She also gave me something to help me sleep better.

I found a new endocrinologist because the last one was a raging fuckhead. The new one listens to me. He was willing to put me on thyroid medication to see if it would help with the fatigue (since I’m doing everything else I can to try to treat it). He didn’t think it would, but I feel differently. At least he was willing to try. He’s got me on a new diabetes medication which he said might help with weight loss. I’ve been doing some on my own anyway since my diet has changed, but I’ll take the help I can get.

My stomach issues have pretty much been resolved! I’m no longer running through stores and malls, praying I don’t shit my pants! The pain in my upper right quadrant is gone! The price I’m paying for it though is a restricted diet. I suppose I can start adding things back in to see what’s bothering me, but it’s almost not worth it. I don’t really miss the foods I’m no longer eating (apples, pears, soda, legumes, gluten). Sometimes I indulge, but it’s usually a pretty minimal indulgence. I bought a candy bar since I was feeling deprived, and I just didn’t enjoy it. I’ve definitely hit the point that if it’s going to make me feel like shit, I don’t bother. (Damn you, ice cream!)

Stagnation
My back still hurts. I had a spine doc look at my back MRI but he didn’t see anything in it that would be the reason for my pain. That frustrated the hell out of me, but he said that he thinks it could be the sacroiliac joint. Great. Something new. He referred me for physical therapy, but it takes a while to get in, so I’m going to wait until Mr. Lyndsy and I are back from our summer away. Hopefully that works. If it does, he said we could talk about steroid shots or a possible fusion. After my experience with the lumbar fusion, I’m not keen on fusing anything else, but we’ll see.

I have had continued foot pain as well. That’s frustration since I am traveling with my mother to London and Paris in June and I know we’ll be walking a lot. My foot despises walking, which blows since that’s pretty much its reason for existing in my life. I had an MRI done of my foot. It was ridiculous uncomfortable since I can’t really point my foot and my knee was rammed into the top of the machine. It also didn’t tell us much except that I have inflammation at the base of my second toe. Great. Fucking great. The ortho thinks that it’s probably referred pain from my back (which other doctors have ruled out after looking at my back MRI), but he’s going to do a steroid/pain relief injection at the base of the second toe once it’s been approved by the insurance. I hope to God that fucking helps because otherwise I will cry.

My Achilles tendon is still giving me problems as well. The shockwave treatments don’t seem to be helping. I think the last one made it worse. I have one more scheduled and unless they think more will make a huge difference, I think I’m going to quit doing them and find a way to just live with that pain.

All of this is to say that I’m not dead. I’m just trying to take some time to take care of myself, s my hibernation will continue a little while longer. I’ll be leaving my job at the end of this month so that my health is all I’m focusing on. I’m going to use our 2-month trip to the US this summer to relax, get in a good head space, and try to help my body as much as I can. When I get back I’ll figure out what to do about making money to pay my stupid fucking student loans. I hope by then I’m feeling a lot better.

A Prescription for Change

Being sick for pretty much a whole month on top of the stress my body undergoes on a daily basis has sucked. A ton. I feel like I can probably add depression and anxiety to all of that. Physically and emotionally I am in a really fragile place right now.

In an attempt to try to get some control over some of my issues, I went to an endocrinologist on Sunday. He told me that I don’t have Hashimoto’s now, but it may become Hashimoto’s in the future. (I think he meant hypothyroid…) Accordingly, he won’t put me on medication unless my TSH, T3, or T4 readings come back out of normal range (they never have). The antibodies should come back positive, but he’s seen lab work like that already and doesn’t think it warrants medication. This is in spite of the fact that I present with all the symptoms. Based on my understanding, my numbers aren’t reliable since the thyroid hormones could just be in my blood after the thyroid gets attacked. Either way, it doesn’t look like I’ll be getting help from him.

What I’ve come to realize in the last few days is that my patience level is nowhere near what it usually is. Those who know me know that I don’t seem to suffer bullshit well normally. Imagine that what little you saw is now gone. Yeah, feel bad for the people around me who seem to want to try my patience. Or don’t, since they are trying my patience after all.

While I don’t like how I feel now at all, AT ALL, it’s given me a unique opportunity. I can take a look at my life, how I’m living it, who I involve in it, and what I do with my time and figure out what I just don’t fucking want in it anymore.

There are some obvious solutions – stop spending time with people who piss me off (harder to do than you would like when you’re involved in an organization) and start doing more of what you enjoy.

Social media is a good example. I enjoy using it. I like staying in touch with people, seeing what’s going on in their lives. However, social media is also full of a lot of bullshit. I’ve already posted about how I tend not to back down when I see something come across my screen that seems like it deserves my attention. Even if I didn’t engage, simply seeing something that needs a response is usually enough to get the response.

I think that because my energy has been down I haven’t been able to protect myself from a lot of the negativity that floats around in the ether. I have no defense against the onslaught of horror that comes at all of us every day from so many different angles. I can’t make myself not care.

At this point I think I need to start doing things I should have been doing for a while now.

I need to meditate.

I need to get back into journeying.

I need to focus on gratitude for what I do have.

I need to unclutter my life – people and things that just aren’t helping me be the best Lyndsy I can be.

I need to eat better to try to gain back some of what I lose every day.

I need to enjoy simple things again – reading, listening to music.

There’s probably more I could, and will, come up with but this seems like a good start. I hope it is anyway. The way I am now, I won’t last very long with what little sanity I have left.