Losing a Whole Year

I don't want to write this blog. I have this weird desire to be painfully candid and for some reason - I feel like I should be keeping these thoughts to myself. These words, these feelings, these thoughts that I'm about to share. I feel shame for feeling the way I do, even though I shouldn't. That is the warped perception of a depressed person. 

A year ago today was my last day at my job. The original plan was to take a month or two off for a break; then find another job. I was excited about the break, and the opportunity to start somewhere fresh and new. My plan for my break was to do projects around the house, run, skate, and enjoy the time off. Well, we all know how well that worked out for me. About the time I started my job hunt is when my health completely fell apart. So I have been out of work for an entire year. 

I'm at almost 6 weeks on hormone pellets. I added a patch then took it off after about a week because of the side effects that made me want to get off of it in the first place. On Memorial day I had a pretty good day. I felt really good emotionally, even though physically I felt like road kill. I'm not sure what I did, or if I ate something bad or what - but that night I had a bitch of a panic attack. It was one of those ones that just kept rolling over me in waves and I felt like I was drowning. I took Xanax, but the panic broke through it, wave after wave. The sensation was intense, I felt like I was dying, I couldn't breathe. My husband wanted to take me to the ER, but for what? I knew what was happening. My rational brain was all over it. But the primal reaction and haywire chemicals were in full control. I took more Xanax. Eventually it knocked me out, but even as I drifted off to sleep I could still feel the ebb and flow of that frantic ocean, tearing at the fragile threads of my sanity. 

I've been having issues ever since. It starts with a hot ping in the middle of my chest and suddenly my heart is racing and I'm gasping for breath. It's exhausting. I don't understand why it's happening again. I am so tired that I can't even try to puzzle it out. The slightest exertion sets it off - so I'm spending a lot of time trying to be quiet and still. Trying to cower and hide from whatever it is that is broken inside of me.

It's no wonder I'm depressed. I haven't been depressed like this in many, many years. It's the kind where I feel like a burden to the people around me, a lump of flesh that breathes and eats and just sits there - completely useless. I feel like I've been given up on; by my friends, my family, my doctors. I feel like my existence is pointless. Meaningless. Like I have nothing to offer this world. (Warped perceptions of a depressed person, please understand - we see the world differently. We see it as a place we no longer belong.) 

So I'm stuck in a loop. I know exposure therapy (like driving) is important to regain control, but that requires a great deal of focus and energy. I have neither. I don't know how to fix what is broken in me, and I'm losing the battle. Do I need more hormones? Less? Change something else in my stupid diet? Take some other supplement? Get acupuncture? What is the answer?? I've pretty much accepted that I'll never be the same again, but I still hope to regain some semblance of a quality of life- but when? And more importantly, how?

I know a few folks read my blogs, and I appreciate that. No one wants to read stuff like this. I hate writing it, but it is therapeutic for me. Maybe someone who feels the way I do will stumble upon it and not feel so alone. I don't like how some people respond to me though, telling me placating things or downplaying what I feel. It's like walking up to someone with a really bad sunburn and slapping them on the back and telling them to suck it up. I am hanging on. I am finding things in each day to keep me strong. I live moment to moment sometimes, especially when the anxiety is ripping me to shreds; but I'm holding on.

Monday I go in for blood work. Hormone levels, vitamin levels, etc. See if anything is off. I also started back on the Prozac today, and fuck anyone who tries to make me feel like I'm weak for doing that. I started having really bad discontinuation symptoms; I had no idea that Prozac takes about a month to be fully out of your system; and no matter how low your dose was or how short a time you took it - you can still have discontinuation symptoms. This flare up of anxiety hit me right about the one month point of quitting the Prozac. Could be coincidence. Could be I was stupid to just quit taking it and this is what happens. I don't know. I just know I've lost a year already, with no end in sight. 

In August of 1984, I attempted suicide. I took a bunch of pills, I don't even remember what all I took. I laid down to go to sleep and drifted off. I had a weird dream. I felt like a hand yanked me out of sleep and suddenly I panicked. I made myself throw up the pills. I still got really, really sick - I was sick for a good 2 weeks. I've had tinnitus ever since; because some of the pills I took were aspirin. I didn't tell my parents, I probably should have gone to the hospital. But ever since that attempt, I have had several points in my life - like now - where I didn't want to be here anymore. But something made me decide to stick around. I can't let that have been in vain. 

Ten Months In

Ten months ago yesterday was the last time I skated. At that time, I did not even think I'd still be struggling 10 months later. I'm not going to lie, I am having a really hard time staying hopeful. In fact, I'm not feeling positive at all. I keep getting TOLD to stay positive and keep the faith, but I'm not feeling it. I'm pissed. And I'm tired. I'm resentful. My body hurts. And I feel like I can't breathe. And I'm so fucking depressed that I often wish I wouldn't wake up in the morning - and when I do, I always feel a tinge of disappointment. I'm angry. I'm bitter. And I'm lost. I know no one likes to hear these things, but there you go. That's me.

I'm at almost 5 weeks on the hormone pellets. I had lab work done at the 3 week mark; and the doctor wanted to boost me with 50 mg of testosterone but wouldn't give me anymore estradoil. I tried to tell him that I think some of my lingering symptoms are from that - but no. He increased the progesterone troche to 2x a day and told me to get my thyroid optimal. I stuck a patch on to see if that would help (Vivelle dot, they are estradoil only). So far, I haven't noticed much of a difference. I decided to skip the boost of testosterone, I was having some other symptoms that I didn't want to worsen. It's such a sensitive game, this balancing act. My thyroid still isn't optimal, I'm having labs for that in two weeks - I will also get my other hormones checked at that time to see where they're at. I also did a 24 hour saliva cortisol test to check for adrenal fatigue but haven't gotten the results back yet. I mean, why not? Hashimoto's, surgical menopause, gastroparesis - why not throw another syndrome or disorder or whatever onto the pile?

Sorry, I really am trying... Anyway... I have been reading a lot - I have a lot of time on my hands - and I've read some interesting articles about adrenal fatigue, thyroid disorders, and the role of strenuous exercise in worsening or causing them. I believe that my system was already in decline, but the running is what pushed it over. I also believe that quitting my job stressed me out more than I fully realized. I thought I was doing something good for my body with the exercise and for myself by quitting a job I didn't like - but it looks like I was wrong. If I would have listened to the signs though, I would have figured it out sooner, but I just didn't know. Oh well, I can't go back and change anything, but I'm pretty sure I now understand the how and what as far as everything that broke inside of me. I also understand that this means I will not be able to exercise at that level ever again, and I've accepted that. Healing adrenal fatigue takes time; and once it's done you have to treat your body gently so it doesn't happen again. I do hope I can skate again, but I know I won't be competing. At this point though, I just want to get back to being able to do basic stuff. Like driving. I miss my independence.

So that's where I am, at ten months in. I'm trying to heal physically but apparently emotionally as well. I have so much anger, so many negative emotions; they do me no good. I honestly do not know what to do next. So I'm just waiting. One thing at a time - one day at a time.

Here's an article about adrenal fatigue and over training if anyone is curious. I might not have been exercising as intensely as some other people, but our bodies are all different. I honestly didn't think I was pushing that hard. But then again, I had a lot of signs that I was. The dizzy spells at the gym, my heart rate during and after exercise, and how I started having a really hard time recovering after a work-out. Please pay attention to your body and don't make the same mistakes I did!

Oh, Doctors....

Over the course of the past 10 months, I have seen 15 health care providers; (not including ER or urgent care doctors - I have been to the ER 3 times and urgent care twice.) Each one offered unique - and sometimes unpleasant - experiences. Sadly, I'm not alone in doctor hopping; in some cases, if you don't have a cut and dried symptom/diagnosis/treatment experience; you are often left to either accept inadequate or incorrect treatment; or you go on a journey to find someone who can actually help you.

First and foremost in my arsenal is my primary care physician. I'm lucky; he is a very compassionate and caring doctor. He genuinely wants to fix what's broken. He digs, he listens; he wants to help. I saw him several times before he himself had to go out on leave for health reasons, and I know that if he hadn't had to have done that, my experience would have been extremely different. But without his guidance, I was left on my own to try to figure out what was going on with me. But he did help me confirm my suspicion that my hormones were out of balance and my instincts told me that this was the primary cause for all of my symptoms - so he set me on the right track. From there is where it got tricky.

My first gynecologist was actually the one who did my hysterectomy. I really liked her because she, too, seemed extremely concerned and caring when I first started seeing her. When I went back to see her about my current issues; she had changed. She was abrupt and brisk with me. She wasn't interested in my hormone labs or my theories; she didn't think my anxiety was being caused by my hormones. Anyone who is in a situation where you feel broken and vulnerable; bewildered by your body being unwell and your mind being unsound - the last thing you need is a doctor who basically says "it's all in your head". The funny thing is that most women expect this kind of reaction from male doctors - after all, how can they possibly know what it's like to be a woman? My thoughts were that this particular doctor was more interested in the beginning part of the female journey - puberty, birth control years, having babies; and not so much in the period that comes after all of that. After my surgery to remove my ovary, I had a bad reaction to the glue they used on my suture sites. The skin became inflamed and itched something horrible. When I called about it, she told me to put some cortisone on it and deal. I actually had a nurse at my PCP's office take a look at them to make sure they weren't infected, because I didn't want to deal with the gynecologist. She made me feel like I had done something wrong, or that I was crazy. I still don't understand  how she changed so much.

Finding a good GI doctor is like trying to win the lottery; and getting in to see a good GI doctor is like waiting for Christmas. My GI doctor was too busy to see me, so she sent me to see her new PA... Her old PA was awesome, but no one would tell me where she went.. So I had to go see the new PA. I explained to this guy about the shortness of breath, about how this started once I started exercising more intensely; and he told me some story about a saber toothed tiger chasing a cave man. Now, I know that what he was trying to get at was the whole fight or flight bodily reaction, but since I am a literal thinker and know for a fact that saber toothed tigers are extinct; his entire analogy was a fail. He sent me to do the gastric emptying test, told me I had gastroparesis, gave me a hand out for the diet and a prescription for Domperidone (a drug that is not FDA approved in the US) and sent me on my way. But I still had questions. WHY do I have gastroparesis? HOW did it develop? Will it just continue to get worse or is it something that flares up on occasion? I also have a hiatal  hernia, could that be getting worse and causing shortness of breath? I never got those answers. The second GI doctor I saw was a little better, but still at a loss. He prescribed a couple of different drugs for me, but my body is super sensitive and I reacted badly to them. His last resort was Elavil (an antidepressant that helps suppress the visceral response to a physical ailment - like having anxiety attached to feeling overly full after a meal.) After that, he was done with me. I finally got in to see my original GI doctor - she's a really great doctor - but this experience with her was not good. She seemed exasperated. Said I was looking for some magic cure to fix everything. She said I was looking at a 'good decade' of struggling with my hormones and trying to feel balanced. I left her office in tears, why do doctors do that? I know that is NOT going to be the case with me. At this point, I'm done with GI doctors.

It's seems to me that a lot of doctors either don't know or don't want to take the time to explore the hows and whys of what's wrong. Other doctors seem to take a sadistic pleasure in scaring the shit out of people so that they won't expand their minds and seek out alternative treatments. Endocrinologists are notorious for that; they don't want you taking a natural desiccated thyroid pill like Armour, the endocrinologist I saw asked me if I knew what was in Armour, then proceeded to explain the process of drying out a pig thyroid and grinding it up to make a pill. Sorry honey, I eat bacon. Popping a pressed capsule of dried pig thyroid doesn't gross me out. So she tried the scare tactic; that taking NDT (naturally desiccated thyroid) will put me at risk for cardiac failure or osteoporosis. I know better.. There is no proof. I read a lot on the internet, and sorting through fact and fiction can be a challenge. But when you consistently read the same things from a variety of sources, it helps you to form an opinion on what is best for you and gives you ideas of the hows and whys. Some doctors don't like it when you present this to them - "I read this on the internet, what do you think?" If they have a big ego they laugh in your face and shove a prescription at you. A good doctor will listen and take your thoughts into consideration.

So during all of this, here's what I've learned... That gastroparesis can in fact be caused by thyroid disease. It makes sense, the thyroid gland controls so many things in your body; including how efficiently your digestive system works. If you're hypothyroid and low in hormones, then your digestive system can slow down and sometimes even stop. That's what gastroparesis IS. NO ONE even mentioned the possibility of a connection between the two. I've also learned that menopause and hypothyroid have a lot of the same symptoms, so finding out what's causing what can be tricky. In my own particular case - my plan is to focus on getting one thing balanced first then see what's left over. With the new diagnosis of Hashimoto's, it's going to be even more difficult, but I think I will get there. I know that there's a connection between thyroid and menopause, unfortunately so many women don't know this and may get diagnosed with one while the other still rages on, leaving them with ongoing symptoms and frustration. I've learned that doctors still think that antidepressants are the answer to everything - instead of trying to find the cause of depression or anxiety and seeing those things as a SYMPTOM rather than a disorder themselves. I know my anxiety is a symptom, and I know that once I fix whatever is causing it, it will abate. I know this because it's already calmed down tremendously since I started using hormone replacement therapy.

My theory is that it's all about balance. Once I get balance, I will feel healthy again. I will still have gastroparesis. I will still have Hashimoto's. I will still be in surgical menopause; but I want to get to a point where I am not defined by these things. I refuse to accept that I'm sick, that I'm limited because of that. I'm determined to dig and find the root causes and FIX THEM. Even if I never get back to 100%, I know I can get close.

My advice to anyone who is on a journey like this: READ. Read blogs, articles, message boards. Learn. Pay attention to your body - you should know it well enough to be able to tell when something isn't right. And if you go to the doctor, and that doctor blows you off, makes you feel stupid, ignores your input or treats you like you're just another cow in the assembly line - FIND ANOTHER DOCTOR. No one can advocate for your health better than you can.

Stuck

I've been so busy waiting to feel better, that I forgot to move. I sit very still for very long periods of time - waiting. My world has closed into this hushed, tiny sphere; with me at the center - sitting very still. Just waiting. I'm not usually the type of person who accepts defeat, lies down, and gives up; so this is quite perplexing. I know part of it is physical, I'm always tired. I'm always cold. I have issues with my breathing. But I've gotten to a point of coddling those things instead of pushing at them. Prodding to test the limits. Again, there is a reason for this - I've pushed the air hunger thing and ended up with panic attacks; half a mile from home with the dog on a leash, in the middle of the grocery store, getting a pedicure; walking to the mailbox. Anxiety is like a virus, it starts small but soon takes over, and I've let it. Panic attacks are horrible. Feeling like I can't get enough air and I'm suffocating is terrifying. How could I not want to avoid that feeling? 

I've had a lot of people telling me what I should and shouldn't do, and you know what? I already know all of this stuff. I just hear 'blah blah blah' because people should already know how advice works - you can dole it out until your face turns blue, but until a person is actually ready to accept and make changes; you're just wasting your breath. Not to mention that in my case, most of the time the advice is unsolicited, and it pisses me off to receive unsolicited advice. It makes me defensive. I'll push to expand this sphere when I'm ready. I'll cut back on the Xanax when I'm ready. I know the dangers of becoming addicted to it, I know how this works - I'm not stupid. I'm stagnant. I'm afraid, and I'm stuck; but I'm not stupid. I have a specific group of people whom I go to for advice; from everyone else I just need a little patience and a little understanding. 

My primary care physician is finally back from leave and I saw him yesterday. It is a huge relief to have him back on the radar; he is one of the people I rely heavily on for advice and information. We mostly talked about the Hashimoto's and the gastroparesis; one theory for why my thyroid numbers and symptoms are all over the map is absorption issues. Since my digestive system is not working right, I'm probably not absorbing my thyroid medication consistently. I believe it, when I was taking an oral progesterone pill - I didn't really feel anything. Since switching to a sublingual (it melts under my tongue, bypassing the gut and going right into the blood stream) I've noticed that it's helping me sleep. So we're going to switch me to a compounded sublingual troche for the thyroid - and find a dose that's between 90 mg (too low) and 120 mg (too high.) He's also running some tests to rule out bacterial overgrowth in the guts, and a saliva cortisol test - I'm fairly certain my adrenals are shot, I just don't know what to do about it. My weight is maintaining at 125, so that's good.

As far as my other hormones go, I'm on the right track with the pellets. I feel a little better overall, but I know sometimes it takes a while for those to kick in. I started low too; so it might take a couple of insertions before getting that just right. The doctor thinks the thyroid is my main issue right now so he wants to work on that. He also says he believes I'm depressed (uh yeah, ya think?) I admitted that. Anyone in my situation would be depressed. But with the bipolar disorder and my propensity to lean more towards the depressive pole - I have to be diligent. I've been acutely aware of the depression because it's not my usual soft, melancholy depression; where I just feel introspective and painfully in touch with my emotions (which I actually don't mind.) This is that dark pit kind of depression, and that's the dangerous one.

And that's where a little pushing needs to come into play. But I don't want to BE pushed - I need to push myself. I haven't had a depressive episode like this in a very long time, but I know that no one can get me out of it but me. This goes beyond hormones and a jacked up stomach; I feel stuck. And getting unstuck is going to take some conscious effort on my part. I've noticed that I don't listen to music anymore, music has always been like medicine for me. I'm listening to music right now. I need to remember to listen to music that lifts my spirits and makes me feel like moving. So I'll uncurl from the sphere and move. I have to make myself. The hardest thing is going to be facing the fears and phobias that have developed over the past 9 months - driving being one of them. Taking walks by myself. Being in social situations. I've been avoiding all of that. I have a new comfort zone. And it's really, really small. And with no set schedule it's easy for me to relapse into what I know, so this is going to take some work.

Another area of frustration for me has been FOOD. Both Hashimoto's and Gastroparesis have special dietary requirements to manage them. Hashimoto's focuses on clean eating, no gluten, no processed foods, eating lots of fresh organic fruits and vegetables, lean meats, and other whole grains - like rice. The AIP eating (autoimmune protocol)  takes this a step further and eliminates ALL grains and dairy. On the other hand, Gastroparesis focuses on eating easy to digest foods. Guess what's the easiest to digest? Processed foods. Mashed potatoes, pudding, macaroni and cheese, pasta, chicken. Canned fruits and vegetables cooked until they're mush. No fresh fruits or vegetables because of the fiber. It's ridiculous trying to find balance. I am good with some dairy - eggs, butter, cheese, milk; these don't bother me. So I compromise - I eat gluten free waffles and cereal; easy to digest foods but also gluten free; but I'm stuck in a rut and eat the same thing every day. I should just juice everything and be done with it.....

The photo above has a quote from a song from a band called The Temper Trap. The song is called Sweet Disposition. It's one of those songs that makes me feel good, but that line in particular sticks in my head. I won't stop 'til it's over - I won't stop to surrender...