Disappointment

Disclaimer... In this post, I'm going to sound like I'm the most selfish person in the world... But with this blog, I'm trying to be honest about who I am and what I'm going through so that others know they aren't alone in having these same feelings. So I'm planning to share the truth even if it doesn't put me in the best light.

I'm sad... disappointed... frustrated... It's Christmas Day, 2020. I'm at my boyfriend's parents' home in another state and today I'm supposed to be having Christmas with his extended family, the vast majority of whom I didn't meet until this week and about half that I still haven't met even after five days here.

But I don't know what's going to happen. You see, his dad had a TIA (mini-stroke) on Wednesday morning. He was in the hospital two days and was released last night. He was doing well and it looked like he dodged the bullet of having lasting damage.

Overnight things changed. I'm an early bird so I was awake when my boyfriend's parents woke up. At first, I thought that my boyfriend's dad was just weak... until my boyfriend's mom told me that he could barely move his right side and that she was considering taking him back to the hospital.

My first concern was for them - and I was also worried about the long-term affects of the stroke. 

The embarrassing admission I have is that this thought was quickly followed by: So now what's going to happen with the family gathering I have been both excited about and dreading for at least six months?

I don't want it to sound like all I'm thinking about is myself, but I already had to cancel the main activity I was looking forward to - going on a river cruise to look for dolphins, manatee, and other wildlife. As a photographer with a foot injury, this was right up my alley. I could sit, enjoy the wildlife, and take lots of photos without having to deal with my injury. 

We were scheduled to go the day he had the TIA. With it being Christmas week, he was already booked for the few slots he had left, so rescheduling wasn't even a possibility... and with my boyfriend's dad's condition, we had no idea how long he'd be in the hospital anyway.

So, like I warned you about, I'm being incredibly selfish with this admission, but I'm so sad that my plans have been ruined. My boyfriend and I have been dating almost four years now and this is the first time he's been able to get off work long enough and the right time of year for us to come down. I wanted to cram in so much this week, as it's the first vacation I've gone on in several years too. 

But instead, I'm doing a lot of what I'd be doing at home... playing Candy Crush, watching stuff on my phone (with earbuds so I don't disturb anyone), culling photos on my laptop, and blogging. I'm doing these things on a less comfortable bed than mine or at the kitchen table with not very comfortable kitchen chairs and a laptop. 

At home, I have a comfy bed, a cushy desk chair, a huge monitor (for photo editing), and all I need. At home, even though it's Christmas week, I can work some. At home, I can go to the gym and swim or take a long, hot bath (stress relievers for me).

One more thing... with COVID, we can't even go to the hospital to relieve his mom or help in any way. We are stuck at his house, waiting on updates.

I am so upset but even as I admit that I feel bad that my major emotion has to do with me. I feel like I should be more concerned about his dad's health and how his mom is handling all this. Don't get me wrong, I am both of those things. But I was really hoping to just have a fun time this week - and that's blown to bits. 

All I can do is try to make the best of it and try, try, try to not focus on all the bad. 

(I'll be so glad when 2020 is over...)

Using a Wheelchair for the First Time

If you have read this blog recently, you know that I had a major ankle injury this past summer. The only way I could walk for even a few steps the first two months was to use a walker and I'm still recovering several months later (it's now December).  

I am to the point where I can walk on level surfaces without too much of an issue. If I'm going places where I don't know what types of surfaces and varying heights I'll be walking on, I wear an ankle brace and take a cane. 

But for very long distances, like going to a zoo, I knew a brace with a cane wouldn't cut it. I realized the only way I could get around was to get a wheelchair. 

My last blog post discussed the whole process of getting ready for a trip to meet my boyfriend's family, which I knew would involve at least one instance of needing to do lots of walking. This included buying a wheelchair because I knew that I couldn't count on them having one at the place(s) we visited, and even if they did, it might not be a heavy-duty one (which I need because of my weight). 

So I ordered it. There was a lot of nervousness surrounding whether it would arrive in time for the trip with all of the delivery delays surrounding a COVID Christmas. I had decided it made more sense to get it delivered to my boyfriend's parents' home in case it arrived after we left. Still, I was very relieved when I got a confirmation that it had been delivered.

But getting it at his parent's house caused a new dilemma... I was nervous about sitting in it for the first time. I knew it had measurements and was supposed to be big enough to fit me - and heavy-duty enough to not bend under my weight - but until I sat in it, I wouldn't know for sure. 

I ended up waiting until everyone was asleep to try it out for the first time. I sat in it and was so relieved when I realized it was the size it advertised as well as being very sturdy. Only then was I able to start getting excited about going to the zoo with his family.

The closer I got to actually getting to the zoo, the more nervous I started feeling... again. What would it be like to have to be wheeled around? Would there be places I couldn't get to because they weren't accessible? Would I get judgmental looks because I am so overweight and I "should" be walking?

I'd love to say that when answering those questions, it turned out that there had been nothing to worry about. I can't say that's true. It wasn't fun to be wheeled around (more about that later). Most of the zoo was accessible but there was one place I had to go on a very shaky lift and a couple of other places I had to get out and walk (which was difficult with my ankle). I got looks but I didn't feel a lot of judgment (some, but not a lot).

About being wheeled around... you need to know that this type of wheelchair has small wheels so it fits easier into a car. This meant that when my boyfriend, who is also a photographer, wanted to get a shot of something quickly, he'd park my wheelchair and just leave me there. I was stuck because I can't move it on my own.

Sometimes this meant that I couldn't get the shot I wanted, because I either had to try to get up and walk (which was very difficult) or just miss it and wait for him to come back. It didn't happen much as he takes great care of me, but there were a few times he did this. 

I didn't get mad at him; however, I was really mad about the situation. I kept beating myself up for letting this happen. Though the ankle injury wasn't my fault, I felt that if I was a typical size, I'd be fully recovered by now. 

When I can step back (pun intended) and analyze my feelings, I know that even incredibly fit athletes have injuries where they have to be in a wheelchair for a time. I know that I'm a food addict and didn't realize this for 50 of my 52 years on earth. I know that I have other medical conditions that contributed both to my injury and my weight. But at the zoo, I continued to beat myself up. 

On the other hand, it was nice to be able to get around the zoo without worrying about whether I'd be able to walk the next day due to straining my ankle. It's also a relief to know that if my ankle gets worse or something comes up where I normally would have to do a lot of walking, I have a way to get around. 

My hope is that when I get home from this trip, I'll be able to store the wheelchair and not need it for a very long time, if ever. But it is nice to know that I have it if I need it. So I'm thankful for my wheelchair, even though it would be so much better to not need it at all.

When Someone With Anxiety is Getting Ready to Visit the Boyfriend's Family for the First Time

Two weeks from tomorrow we'll be on the road. So many emotions are going through my head... fear, excitement, anxiety, hope, and a myriad of others. You see, for the first time in the 3 1/2 years since I met my boyfriend, we are going to visit his family for Christmas.

When he first told me he could get off work and that we were going, I was excited. His parents still live in the house he grew up in - and I've wanted to see it. He has a huge, close family and I've wanted to meet them. Plus it's a chance to do something different for Christmas and get out of town, which is a huge treat because of being home so much due to COVID.

Then the anxiety started. He made an offhand comment about how his sister doesn't like anybody... it's the first time I realized I might not be liked by his family. When we first planned it, COVID issues should have no longer been a factor... they still are. 

The worries multiplied... What were we going to do each day? Where were we going to stay? Will my healing ankle injury handle the activities planned? Will my mental illnesses get in the way? What about my weight - will that be an issue? How will I deal with my new meal plan in the midst of lots of food and also not wanting to draw attention to myself?

I'm thankful that the work I've been doing with therapy, support groups, and my sponsor kicked in. I decided I needed to be proactive concerning the trip. I'm so proud of myself for both realizing that and for actually taking those steps.

For one thing, after discussing it, we decided that we needed to drive instead of fly as well as stay in a hotel instead of with his family. 

There are many reasons driving makes more sense to me as someone with anxiety. For one thing, my car is an extension of home. It's something familiar when almost nothing will be familiar for eight days. 

It's also practical - both on a general level and concerning my anxiety issues. I'm very overweight so with some cars the seatbelts are tight. I won't have to worry about that embarrassing and safety issue if I have my own car. 

This will also give me somewhere to escape if I get overwhelmed with his family. He has a large, loud, multigenerational family and I know enough about myself to know that the noise could be hard to deal with. Having my own car gives me a place to go - either to just sit in the car for a while or to head back early to the hotel if needed... without inconveniencing anyone.

Staying at a hotel gives me even more of a chance to breathe. I don't have to have "guest behavior" every minute if I have a space where I can relax. Even though I know the family is sincere when they say that it's not a bother to stay with them, I'll still feel that I am intruding. Until I get to the point in my recovery that I truly accept that I'm not always in someone's way, this is a great way to deal with those feelings within myself.

There's a part of me that is concerned about the financial aspect of staying at a hotel. Yes, we are saving money by not flying, but gas adds up so it's not that much cheaper (especially considering flights are inexpensive right now). I wrestled with that at first but finally realized that my mental health was worth it... I am worth it.

In addition, there's the ankle injury I had earlier this summer. I recently got to the place where I could walk on it without a lot of pain but not for long periods of time. My boyfriend's family has already expressed an interest in taking us to some attractions that involve a great deal of walking. 

I felt both a lot of fear and sadness when I first heard. I hate to be a bother and the thought of making everyone change their plans because of my health and needs is at the top of the list of ways I could be a hassle. At first, I  just hoped I could somehow make it with the new brace my doctor ordered for me and a cane that I bought for "just in case" times.

Then I did more walking to test my ankle and I realized that this was a pipe dream. There's no way I can make it around their zoo, for example, without being in a lot of pain and possibly re-injuring my foot. I was looking at the website for one attraction we might go to... and wondering how I could possibly walk that much... when I considered renting a wheelchair. 

However, remember how I mentioned I'm very overweight? Though I've been too scared to test them out, I'm almost positive most regular size wheelchairs are too small for me. When I reflected on this, I got pretty discouraged and very, very sad until I decided how I needed to be proactive in this area too. 

My ankle could be an issue for a very long time and hoping it would get better won't just make it get better. I have other health issues that come into play both in how long it takes to heal as well as how much I will eventually recover. So I decided to go online to see how much it would be to buy a heavy-duty wheelchair.

This decision is also scary. A very overweight person in a wheelchair carries a lot of stigma. It doesn't matter if there's an injury involved... I know that many people will see me and think, "She is lazy and has no willpower. If she just would stop eating and start walking instead of coasting along in a wheelchair, she wouldn't need it." 

That stigma, that issue, is for another blog. All I can do now is know that even though it will be a pain to deal with both physically (I'd much rather walk than be pushed in a wheelchair, and it also won't be fun to have to find room for it in the car) as well as emotionally (trying to not be embarrassed when people see me riding instead of walking), it's something I need right now. 

Like the hotel, there's a part of me that is concerned about the financial aspect of buying a wheelchair. It makes sense to not rent one each time I need one at an attraction in the long run but right now, it's an investment. I again wrestled with that at first but finally realized that my physical health was worth it... I am worth it.

It's hard to understand that I am important. It's hard to believe that I'm worth others going to the trouble of dealing with my issues. It's hard to spend money on myself and what I need. It's hard to recognize that I'm doing the best I can and it doesn't matter what others think.

But I'm getting there. I might not be at the place where I can take all of this in stride, but at least I'm now at the point where I think proactively about what needs to be done to make a trip like this the best it can be... for me. And I'm worth making that happen.

The Holidays are Coming! :-(

This is my second Thanksgiving/Christmas season in Eating Disorder recovery, but my first where I am really working a program. I started in a support group for eating issues about this time last year (Oct 2019) so I was attending meetings during Thanksgiving and Christmas but wasn't actively trying to control this addiction. This year it's different.

I've been incredibly depressed and stressed recently and this morning I figured out at least part of the reason why - the holidays are coming! I'm not that far into my active program and so I'm still learning how to handle food challenges that come up in the course of everyday life. Add to that having social anxiety disorder (where food is the main way I cope with social situations) and I realized I'm dreading the holidays incredibly, especially Thanksgiving.

It still amazes me how I can give advice on recovery to others but totally forget it when it comes to myself. I do a newsletter for one support group I'm a part of and each year the November issue is about how to stay sober during the holidays. There are several great tips that I learned through research and share in the article, but the very first tip I list is, "Before the holidays hit, make a plan." 

However, this idea completely slipped my mind when thinking about how I would cope with the upcoming family gatherings that surround food. It took two appointments less than an hour apart this morning - one with my therapist and one with my nutritionist - to be reminded of this simple but important fact.

I still haven't totally fleshed out what "making a plan" means for me this holiday season, but I have started with a couple of things. 

To help with my food addiction, I decided to talk to family members to see what will be served. After getting the menu, I can decide what I want to bring that are healthier alternatives for what is already there. I don't plan on bringing a full meal for myself, but having some options I know I will like but aren't horrible for me should make mealtime easier.

Also, my nutritionist gave me permission to give myself grace and to remember that it's only one day. Even if I do "blow it," I don't need to spend the next week beating myself up. All that does is make me feel I should just give up completely. She encouraged me to celebrate each good choice and know that even if I make some bad choices, it's not the end of the world. I can try again the next day, or even as early as the next meal.

Having some accountability before and after a family function can also be useful. If I call my sponsor or another friend in one of the programs I'm in before I walk in (getting a much-needed pep talk beforehand) and then commit to calling as soon as I leave (to hopefully discuss how great I did), then I'm more likely to make better choices. Everyone loves to be praised for the good job they did - or encouraged that it's not the worst thing if it didn't go as well as hoped.

To help with my social anxiety, one thing I do is to park my car in such a way that I can leave if needed without having to move cars around. This "escape plan" reduces my anxiety by giving me an out without having to bother anyone. 

Another is a pre-emptive strike. This year I'm visiting my boyfriend's family the week before and including Christmas. I've only met one family member so far because they live out of state. We had planned to stay with family but after deciding that I need to make choices to decrease my anxiety, I realized that the money I spend on a hotel will be well worth it. There are just too many unknowns and by choosing this option, I can control one of them.

During family functions, I have given myself permission to walk outside or find a quiet place to decompress if the noise gets too overwhelming. It's important that I remember that I don't have to be in the middle of everything going on. I also try to help others so that the focus changes from my anxiety to meeting another's need.

I can't predict the future and thus, can't tell if Thanksgiving and Christmas will go well or not, but with a plan in place, at least I have a shot of making them the best they can be - even though I'm an addict with mental health issues.

Depression Really Gets You Down

I have several mental illnesses as well as many physical health conditions. But the one that rules my life, especially lately, has been depression.

Even though I have major depression, I have had many accomplishments in my 52 years on the earth. I graduated with the highest GPA in my class for both my bachelor's and master's degrees. I was a single mom throughout the vast majority of my daughter's life and did most of it without a lot of support (financial, emotional, physical) from my ex. I am both a published photographer and writer.

So I'm what many would call "functional" in spite of my health challenges. I am able to do photography or writing work when I am able to get work (unfortunately with COVID those are still few and far between). I am in a long-term, wonderful relationship with an amazing man. My finances, though not abundant, are in order. I am involved in several service positions and have been told by others that I'm a big help to them. 

But if you look past the surface, my life is a wreck. Internally, I'm a hot mess.

Every day lately, it's been a huge accomplishment for me to just make it out of bed. I consider it a good day if I haven't broken down in tears within an entire 24 hours. (Nothing wrong with breaking down in tears but I'm tired of being so sad all of the time.) Hygiene is going by the wayside in that I do what I have to do as far as bathing and dressing go but it's not only a big effort to do so, I do the absolute minimum. 

As difficult as those things are to deal with, what gets me more is how I just feel numb all of the time. I just don't care... and I'm one who usually cares a LOT - about people, about excelling at what I do, about my friends and family, about my environment, about keeping stuff clean and organized, about helping others. 

You know that symptom of depression where you no longer find joy in the things that you used to love? It's something you can't understand until you have felt that nothingness yourself. It makes no sense... how can you suddenly, without warning, not be passionate about things you have been passionate about for years? 

Writing and photography are two of these passions. But at the moment it's all I can do to make myself write something as simple as this blog... and I definitely don't pick up a camera unless I'm being paid to do it right now. 

I sit at my desk for hours and do "stuff". I know I'm doing something because I'm not sitting staring at the screen for those hours, but it never feels like I've accomplished a single thing at the end of the day. I even make sure to write down what I've accomplished every day, hoping that the joy of a long list will help. 

It doesn't. I can have a page of items that I have been able to tick off my to-do list and it just doesn't matter.

Last night I realized it has gone deeper than usual in that relationships are being affected. I love my long-term boyfriend more than anyone other than my daughter and right now I don't even want to see him. I don't find happiness when I get to visit with my daughter. Part of it is the overriding numb feeling I have; part of it is that I'm tired of dragging them down with me into this pit. 

I escape into seemingly endless videos and old TV shows, usually while I'm still trying to be "productive". That may not be unusual for many of us nowadays, but this is not my norm. I can probably count on one hand the number of TV shows I've watched by myself in the previous six months before this one, much less the entire series. Now I watch something for hours each night. 

You are probably thinking that I need a therapist... or a psychiatrist... or meds... or God... or exercise... or alleviating my stress... or any of the myriad of things that do help some people in my situation. The thing is, none of those things seem to help me. 

I've been working with therapists for decades. I haven't found a psychiatrist who does anything other than push meds - and I've tried just about all of the prescriptions for depression out there and they don't work for me. I am a Christian and rely on my God to make it through each day, but this relationship doesn't change my mood. Exercise not only makes me feel worse because I get sore easily, but it's also out of the question at the moment due to an ankle injury. My living situation, finances, and work are all stressful and there's no way to really change these at the moment. 

So what do I do to keep from wanting to just give up completely?

I blog when I don't feel like it. I bathe even when it takes a major effort to do so. I get out of bed even when I feel like a lead weight on top of me. I research, and research, and research more to hopefully find a better psychiatrist who can actually make a difference. I pray and connect with others who share my beliefs. I brainstorm ideas on how to alleviate my stress. 

Basically, I keep going.

Even though it feels like this will never end, I know that one day it will. I just have to keep going until it does.

Self-Employment with Invisible Illnesses

In the 40 or so years I've been working (and I do count babysitting as my first "job"), my job path has taken many twists and turns. I have tried and thought about a variety of options for a career - wanting to be a stay-at-home mom, being a full-time nanny, thinking about majoring in math in college, volunteering as a DJ at a local college radio station, working a short stint as a professional audio engineer, and several others. I finally decided on teaching.

I won't go into the details, but burn-out, government interference in the teaching profession, and my mental illnesses and health issues all led to my leaving that career. 

However, a former teacher who has spent her whole life working with children but is now completely burnt out in that area doesn't have many other job possibilities. I never worked in food service or at a desk; technology has changed so much that my audio engineering days are long gone; plus I don't have the money to go back and get another degree in math or another field.

My dream was always to be a professional photographer and/or writer. In the past, I didn't have the self-confidence that I could make it so I opted for the safe route of a salaried career path. I did side work as a photographer for a long time and even got published a few times in a local newspaper. I wrote journals and essays for myself, always wondering if one day my writing could be published. Even as the realization came that I needed to leave teaching, I still thought I wouldn't be able to make it by working for myself.

Through the encouragement of family and friends, circumstances that made it the right time to try, many "God-coincidences", and a LOT of trial and error, my photography business started taking off. Then my writing also started becoming a good means of income. It's still not to the point I can make a living off solely my photography and writing, but I'm doing so much better than I ever dreamed. 

That said, there are a lot of pros and cons of working for yourself when you are also dealing with mental illnesses and several invisible health conditions. I've listed a few I've dealt with in case you are considering doing the same thing.

Pro... The freedom to set your own hours: If I'm extremely depressed or my anxiety is getting the best of me, I can do what I need to do for myself without having to clock in every day at the same time. Having flexibility also allows for the many doctor visits that go with having more than one chronic health condition.

Con... The freedom to set your own hours: Sometimes it can be hard to not work, especially when I'm in a hypomanic cycle. I get obsessed and have a hard time stopping, even when I need to eat or take a break. Not having set times to clock in and out means I often work evenings and weekends. Other times it can be hard to make myself sit at my desk at all and even when I do, my focus is all over the place. 

Pro... Not getting a steady paycheck: Working on your own means that you have the potential to make a lot more than in some jobs, especially one that pays minimum wage - the only kind of work I could get as one who is burned out with my initial career and who hasn't really trained for anything else. The sky is the limit if you work enough hours and hard enough.

Con... Not getting a steady paycheck: As Generalized Anxiety Disorder (GAD) is one of my most impactful mental health issues, not having a steady paycheck can add a lot to the anxiety I already feel on a daily basis. Even though I've recently built up a small savings cushion for the first time since working for myself, there is ALWAYS the anxiety that it could be wiped out at any moment if I can't get more work. There is also the issue of not being able to get certain financial perks, like a loan or a credit card, if you can't prove a regular income.

Pro... No day is the same: Every job is different. Each photography shoot, each writing assignment, each mystery shop, each Uber or Lyft ride... each one has unique aspects and I'm always having to be on my game to do each one to the best of my ability. 

Con... No day is the same: Again, my anxiety comes into play with not knowing the conditions I'm going to deal with in each individual job. There are times I wish I knew what I was going to be doing each day; what environmental conditions I would have to deal with; and exactly how long it would be until my work was completed for the day.

Pro... Being a business owner without training: Everything from marketing to social media to doing taxes means expanding my horizons and learning a lot of new information. As one who loves to figure out how to do something new as well as not having to rely on others, it can be fun to figure out the aspects of working on your own like building a website, designing a marketable logo, or producing a brochure of your work.

Con... Being a business owner without training: Sometimes it's extremely easy to get overwhelmed. That research I mentioned earlier is fun but it's also something that takes a lot of time, which is something in short measure if you are working for yourself. Every hour I spend on that website... or logo... or brochure... is taking away from time used actually earning income (though I always recognize that it's those kinds of things that are the way to get income later). 

Pro... Learning how to rely on God: As a Christian, I very much believe that God will take care of me. This means not always finding that provision in the exact way or timing I'd prefer (I would love a lot bigger savings account and often nicer "stuff") but I do know that what I need will somehow be there when I need it. This has made me realize that I can get by with much less than I thought I needed and has helped me appreciate what I already have.

Con... Learning how to rely on God: It's a great lesson to learn but it's HARD. My anxiety leads to many nights of tossing and turning when I wonder if I'm ever going to get more work. Fear of not having that steady paycheck or what the next work assignment will bring can overwhelm me at times. But I do know there's no other way to learn something like that kind of reliance except for living it.

As you see, there are pros and cons with the exact same points in every aspect of not holding a traditional job. Though it's not for everyone, for those with multiple mental and physical health needs, working for yourself is definitely something that should be considered as a means to doing what is needed to make it.

An Expression and a Question

A while back, I made a note about something that was said to me in a support group meeting. This happens often. Many meetings I will find myself writing down insights others share, so that I can ponder them later. 

This particular phrase isn't an "insight," however. It's said often in these types of support groups and the one who says it probably has no idea that it can have two meanings. It's spoken as casually as the more common term, "Thanks for sharing," that several say at the end of every share.

Most of the time, this expression is saved for those instances someone shares a particularly heartfelt experience. There are some support group members who gravitate towards using it regularly, so during some meetings, it might be heard more often than usual. But in most of the groups I attend, it's rarely used.

This phrase is "We're glad you're here."

On the surface, it doesn't look like it has a double meaning. It's pretty straightforward. When you tell someone you are glad that he/she is here, then that's what you mean - you are glad that person is at the meeting.

I've been involved with support groups now for over 2 1/2 years. For the first 18 months, I didn't hear it that often. I said it maybe once or twice. But then September 2019, it was said to me after I shared and a lightbulb went off.

I'm Bipolar Type 2 and have several other medical and mental health issues. Suicidal thoughts flood my mind often when I'm really depressed. A stretch of several days in September 2019 was one of those times. Though I never got as far as having a plan on how to do it, this time I got very close.

I went to a meeting because it's what recovering addicts do. When I'm depressed, I'm usually quiet and won't talk to anyone. I didn't plan on sharing. I was just going to listen to others and was hoping I'd walk out of there encouraged enough to not even want to make a plan.

I can't remember what the topic that night was, or even exactly what I shared. I'm pretty sure I shared some of the struggles I was dealing with and that I was really depressed. I may have even shared that I was suicidal.

I finished my share and heard many say the standard, "Thanks for sharing." But then I heard a sole person say, "We're glad you're here."

You know those "lightbulb moments" that you sometimes get? I had one right then.

I don't know if the person who said it meant for it to only have the straightforward meaning. I didn't notice who said it so I couldn't ask. 

But when those words were spoken, to me, at that time, in my current state of mind, it meant more than "someone was glad I was at the meeting."

To me, in that moment, it meant that the person was glad I was still here, on earth... alive. 

I came across that phrase today when I was looking through some old notes. As I was even more suicidal a couple of weeks ago and did have a plan during that dark time, I'm thankful that I was reminded that there are those who are glad I'm still here.

I'm also thankful for others who are also still here, and not just at a meeting.

On this same idea of being glad you are here, I want to share a life-saving question that has saved my daughter, some of her friends, my mom, and myself. 

It is, "Will you promise you'll stay safe?" 

My daughter and my boyfriend know when I get really depressed or incredibly anxious to ask me. I do the same for them. We don’t answer until we are sure we can really promise… and being asked the question helped save me that night a couple of weeks ago. Suicide hotlines are helpful but knowing that someone you know cares enough to go out on a limb and ask that question can literally be the difference between life and death.

If you see someone really down and have even the slightest suspicion that he/she is thinking about suicide, ask the question. If suicide is being thought about, it's not offensive if you ask. Those six words could potentially save a life.

"Quarantine" has Reached a Whole New Level

Sometimes it seems like life just won't go your way. This can happen due to illness, relationships, job issues, mental health, or an infinite number of other reasons, including a pandemic. I know that every person out there is battling right now in some way or another due to COVID. But right now, I'm having a difficult time thinking about "every person out there" when I'm having it especially rough right now. 

August has been an incredibly tough month. It started out with a stomach issue I had. Though I was still able to do some things, I felt miserable a good bit of the time. I still have no idea what was going on at the time but after a little over a week, it just went away.

The first day I felt half-way normal, I decided to get back into my regular routine. Now that the YMCA is back open, I have started swimming again a few times a week. With my stomach issue, I couldn't chance it so I was greatly looking forward to getting back to doing it.

Something you need to know to understand what happened is that I don't have full range of motion in my right foot due to multiple injuries throughout my life. When I swim I work on this and try to flex and point that foot to increase its range of motion. 

For some reason that morning the range of motion was much greater than usual. I decided to take advantage of it and worked it out harder than usual - thinking I must be making progress with it since it was increasing.

I was fine the rest of the day... until late that afternoon. While walking down the hill to my boyfriend's apartment, I felt a sharp pain. I didn't turn it and didn't feel a pop or any other obvious reason for the injury. However, I could barely walk the rest of the way to his place.

The pain got worse throughout the evening. By the time I needed to leave, I knew I wouldn't be able to drive. It took everything I had to get back to my car... and my boyfriend drove me home. Little did I know then what the weeks ahead would involve.

I thought it was some type of strain or sprain. I looked up articles about foot injuries and from everything I could tell, there wasn't a break. I was pretty sure there was nothing that my doctor could do except get me a walking boot or brace (I already had both) so I decided to rest and wait it out. 

The first few days after the injury it seemed to be healing. I stayed off of it absolutely as much as possible and used an old walker that had been stored in the attic to go to the bathroom (the only place I went other than my bedroom). I did the RICE treatment, rest, ice, compression, and elevate, and assumed it would heal within a week or two.

But then it didn't. 

It got worse.

I decided to break down and call my primary doctor. Because they don't have the capacity to do an x-ray at their office, and I had no idea how I was going to get to and from the car to get to an office visit, we did a telehealth appointment. I described what was going on and was told to keep doing the same thing I had been doing. She gave me some slightly stronger pain medicine than the OTC meds I had been taking and I thought it would be enough.

It wasn't.

I don't know if the little bit of weight-bearing I did on it injured it more or if it just couldn't ever completely heal, but sometime towards the end of that first week, it was excruciating even when I was laying down. I couldn't even rest it on a pillow without crying. Nothing helped. 

I got a message to my doctor that I needed a specialist as well as a knee scooter or something similar in order to not have to walk on it at all. (I fell when I tried to hold it up while using the walker so I knew I needed something more stable). This was a long process - to get the referral for the orthopedist and the prescription for the scooter and I was in incredible pain while I waited.

Finally, the day of the appointment came. The doctor confirmed it was ligament damage (nothing broken) and gave me some steroid shots all around my ankle. I finally picked up the knee scooter (possibly the only one in the city). I got some better prescription meds - for pain and to relax the muscles around the ligaments. 

I am now on my 17th day with this injury. During this time I have only left my bedroom to go to the bathroom (just a few steps away), work in my study once (before it got so bad), go to three appointments using a combination of walking boot, walker, and wheelchair for each, and eat with my family earlier today in the dining room maybe 10 steps from my room.

Even though I have a laptop and a bedside table, I haven't been able to do much because it hurts too much if I let my foot dangle down for more than a few minutes (for example, I couldn't make it through lunch with my family without major pain). I am only able to do this blog because I finally figured out a way to set up the laptop so that I can keep my foot on the bed while I write.

So... August has been a bust. I have been able to get some things done on my computer but it's been slow going. Many days I was just in too much pain to be able to form coherent thoughts (which is why writing just hasn't been happening). 

I'm thankful for a few things even in the midst of this, though. I'm thankful that it happened during COVID, when I have very few events to photograph. I've been able to do a little writing but that's also limited due to COVID so I haven't gotten behind with work.

I'm thankful that I live with my parents. If you have read much of this blog at all, you know that it's been difficult at times to deal with being an adult living with your parents. But I honestly don't know what I would have done if I didn't have them. I try hard to not ask much of my parents but at least they will bring meals and drinks when I need them and when my boyfriend is at work.

I'm very thankful for my boyfriend. He has been amazing and has come over most of the time when he's off work, and he does whatever I ask without complaining (even empty the bedside commode I got - yuck!)

I'm thankful that earlier this year I changed to a laptop with a dock and an external monitor for my main computer instead of a CPU/monitor combo. At least I can work with everything on my desktop while I'm stuck in my bedroom. If I didn't have this system, I would've had to get help transferring files from my CPU to a laptop just so I could get some basic work done.

I'm also thankful that it's summer. I'm extremely heat-intolerant and am absolutely miserable in the heat and humidity in the South. If I have to be stuck at home, at least it wasn't during milder weather.

Yes, it's been an extremely difficult month so far. But even in the midst of the problems and pain, I have been able to endure and I've been taken care of. I have a lot to be grateful for.

Why Reward Based Systems Don't Work with Addicts

The other day I treated myself to a much-needed and long-awaited massage (obviously with the masseuse wearing a mask). While I was lying there, I thought about why I'd put this off for so long. My first thought was obviously my finances, as I've never made much money. But as pondered the whys, I realized there was also something else much more thought-provoking.

I love touch. It's my main "love language." I remember crying at my first massage after my prolonged separation/divorce because I had so little touch in my life after my ex left. I didn't date much because I wanted to focus on my daughter and my career, so massages were the only lengthy times I got to experience that craved touch. So, at first, I easily justified the expense. 

Then money got much tighter - and as time passed it got even tighter. My ex stopped paying child support. My daughter and I both had a lot of medical expenses. Massages were now considered a luxury. Even though they still fulfilled a basic need in my book, I wouldn't schedule them due to other needs that I felt had much higher priority.

Several times through the years when I decided to try once again to lose weight, I decided I could kill two birds with one stone - making that desired massage a reward for losing x-number of pounds. 

But the thing was... I was never able to get that reward.

Not...

Once...

Over the course of many years...

It...

Never...

Happened.

Even though it was one of my most enjoyed self-care elements and it fulfilled a need that nothing else could at the time, it never happened. I wanted one so badly. So why could I accomplish so much in life but never could make myself lose even a little weight in order to get something that I so desperately desired?

Since then, I've learned so much about that why. I realized I'm a food addict/compulsive overeater. One of the main tenets of addiction is that no amount of willpower and no punishment/reward in and of itself will provide lasting change. So that was one reason why I could never get to that place.

But somehow I felt there was more involved.

Fast forward to this past weekend... lying on that table, thinking about all this. I recognized there was more involved in this issue that just being an addict didn't include. Then I had the thought, "I'm glad I did this, even though I haven't lost weight or done anything to deserve it." 

The lightbulb went off - I didn't "need" to do anything to "deserve" it. 

The real reason I didn't get a massage during those lean years was that I didn't feel worthy of spending time and money on myself. I could have come up with the money to pay for it if I really wanted. I thought I had to perform (which, in this situation, meant losing weight) to justify the time and expense... to make myself "worthy." 

One huge struggle during my addiction recovery journey is that I'm loved the way I am. Though I am trying to recognize that who I am isn't defined by what I do, I still don't believe it in my heart. 

Every time I fail, there's more shame... there's more heartache... there's more confirmation that I'll never be able to do this (recover and reach a reasonable weight). Every time I lose a reward that I set up for myself these feelings are magnified and flood over me - and I feel even less worthy.

In fact, using punishment when I fail doesn't help because it's what I already think I deserve... all the time. I am so full of ever-present shame because I got myself into this mess that I punish myself daily - even when I'm experiencing success in my recovery battle. That punishment takes many forms but mostly it's by things like not buying clothes that look good on me because I feel I don't deserve to have them. (I also feel I don't deserve to be happy - possibly one reason for my overwhelming depression - but that's something to ponder more later.)

However, what I realized is that maybe I need to do those types of activities because I already am worthy... even if I'm not able to obtain one full day of abstinence from my eating addiction, even if I'm not successful at my career at the moment, and even if I feel like no matter how hard I try, I'll never make a difference in this world. 

I am worth spending time and money and effort on myself because I am me... and I don't need another reason. 

Another awareness from this idea is that maybe I've had it wrong all these years (actually, I know I've had it all wrong all these years - this is what got me into this mess). I've had it backward. 

Part of the reason I am so overweight is due to not feeling that I am worth enough to put the time, effort, and money into eating in a healthy way and exercising regularly. So feeling worthy enough to treat myself to a massage when I need it could be a big reminder that I'm also worthy enough to work the 12-Steps and do everything else that's included in eating disorder recovery. 

Then one day, chances are good that abstinence will come - not because I used rewards when I lost a few pounds or punished myself by not allowing myself nice things (like good clothes) when I didn't - but because I learned my worthiness doesn't come from performance...

And though my plan is to continue on this lifelong journey of recovery, I must remember that even if  I never reach my goal weight... I am worthy no matter what.

Literal Calm in the Midst of a Storm

It's been a terrible day.

It’s storming all around me. Incredible winds... thunder/lightning... a small lake forming in the backyard... and I'm in a screened-in porch. I had to move close to the house and put a big bag around my laptop to protect it from the blowing rain so I could write while I enjoyed the sounds, smells, and feelings of the storm. 

However, though externally I'm enjoying the storm, internally I'm a wreck.

It’s one of those days that's been a true roller coaster ride - jerky ups, steep downs, twists and turns and loops, and some boring straightaways. I fought with a company who misled me (and lost), contacted another company who charged me for something I didn’t receive (and won), filed for unemployment once again because they messed up at the unemployment office once again, had a huge fight with my daughter, was interviewed for an article about having a child who deals with mental illness, and did a few mundane chores.

Unfortunately, I don't have the choice of riding again. Most days include similar rides. Some are kiddie versions and some are the latest and greatest thrill rides, but for those who battle mental and physical illnesses as well as addictions, there are very few days with the option of not getting on at least one type of roller coaster.

Finding calm in the midst of these storms while riding that roller coaster is my goal. But how? 

In every addiction recovery group, the importance of gratefulness is mentioned. It's also vital for those with mental illness... or who lean towards pessimism... or actually anyone breathing.   

With everything I've gone through in my life, I thought I had justifiable reasons to be pessimistic. I use it as a safety measure - after all, if I've imagined and prepared for the worst thing that could happen, then I'd be ready for anything. 

But it doesn't work that way. Looking for the bad in everything, consciously or unconsciously, takes its toll. I am a prime example that if you have that attitude long enough, it's extremely difficult to change.  

Having several anxiety disorders doesn't help. In fact, they may be the cause. It's like the question of which came first - the chicken or the egg – but it really doesn't matter. It’s something that needs to be corrected. 

My epiphany started with a phone call. It was pity-party time and my boyfriend mentioned that I should be grateful within my horrible situation. However, earlier in the conversation, he had his own pity-party about an issue he's having. I thought I was so clever when I turned the tables on him, telling him that he should also be grateful in his situation.

Then he said three words that floored me:

"You are right."

I was speechless. I wanted him to agree that us wallowing in pity was okay. I sat there and tried to think of a good counterargument. 

I couldn't.  

There isn't one.  

In both situations, if we each looked hard enough, we could find something to be thankful for, even though just a few moments prior we each thought that these obstacles were insurmountable.

I then thought about other circumstances in my life that have been highly anxiety-producing lately: my eyesight and unemployment benefit problems. Both are massive issues. 

Every time I look around and can’t see something in the distance clearly, it produces anxiety. The doctors said that my eyes just need more time to completely heal after my cataract surgeries but there's always that little voice saying, "But what if they don't?" 

I am currently getting unemployment benefits (PUA) because there is almost no work currently in my field. You might be thinking, "But she can't work anyway due to the cataract surgeries." I could do photography shoots if I had to (it's just harder with these vision issues) so I’m relying on those benefits until events start back. Since I don’t know how long that will be, the anxiety keeps increasing every day my unemployment problems aren’t solved. 

Either issue could make even the most optimistic person worry… and I’m definitely not an optimist. Plus, I am dealing with both as well as several other small, but very burdensome, matters.

So how can I possibly be grateful? I can understand accepting them as "things I cannot change" (from "The Serenity Prayer"), but being grateful? 

Using the skills I use to find the worst in a good situation - and flipping it around - I found ways to be grateful even in bad situations. 

Concerning my eyesight... I don't have to dread the cataract surgeries anymore; because they were postponed to a time when I am out of work, I've been able to rest and heal easier; and even though I can't see clearly yet, my vision is much better without correction than I’ve ever experienced in my conscious memory.

Concerning unemployment... Freelancers typically can’t get unemployment, so receiving anything is a blessing; through working on these latest unemployment issues, I found a mistake in my favor; I discovered a useful app that auto-redials (the only way I could get a human in the unemployment office); and I was able to pass along what I’ve learned to others having similar problems. 

Concerning today’s issues... Although I lost money over the misleading subscription practices, at least I noticed it before I lost even more; the fight with my daughter helped me realize some things about myself that I need to work through; and I was able to contact unemployment the third time I called (a new record!) and hopefully fixed one of the issues.

So, though life might be storming around me while I'm riding that dang roller coaster (aren't rides supposed to be shut down during storms?) gratefulness might be the ticket that leads to calm in its midst.

And on a side note… the storm that was whirling around me when I started this post has now stopped. There's blue sky peeking through the clouds. Birds are singing. The wind is barely blowing. It's really mild for a late June afternoon in the South.

I loved the ferociousness of the storm but also love this calm. I just need to keep reminding myself that being grateful for the positive aspects of each will help me enjoy wherever I am - calm or storm.

... Just as I was finishing up this post and about to go inside, I heard "Taps" being played at a local cemetery.  I have never heard it from my home before. Hearing that wonderful song from so far in the distance during this enormous quiet after all of the sounds of the storm while writing this emotional blog is just one more reason I'm now calling today an amazing day.

Focus

I just realized there's a double-meaning to the title of this post. I picked "Focus" for what I need to be doing as far as activities and professional work in the upcoming weeks. However, as someone who just had cataract surgery on my second eye and who is having trouble "focusing," it works for that too.

As I said, I'm now recovering from my second cataract surgery. I'm really disappointed and frustrated. I can't see with my left eye - the one I use for distance vision. (Note... I have been corrected for what's called monovision - where one eye is corrected to see close up and the other to see far away. With most people, your brain adjusts and uses the correct eye to focus on what is needed at the time while temporarily shutting down the other. I used this method with contacts and had really good success, so I do know my brain can adjust.)

I know that my eye doctor, multiple websites, etc ALL say that it takes, on average, 1-2 weeks for your eyes to get clear - with full clarity not coming for up to 3 months later. My follow-up appointment yesterday went well. I was cleared to drive (though it's scary because I cannot see clearly, but legally I can see well enough), the pressure of my eyeball is fine, and everything is healing the way it should. 

I also realize that because of the monovision, not only does my eye have to adjust to the new lens, my brain has to adjust to making both new lens replacements work together, which will take even longer.

But when you have anxiety and you are a photographer where your livelihood depends on sharp eyesight, the fear is HUGE that you will be one of those few where it doesn't work. 

That's where I am.

It's all I can do to keep from living in a constant panic. I keep testing my eye for improvement - only to not be able to tell any real changes. It doesn't help that the vision issues not only are difficult to deal with to see, but also make me feel really nauseated. As someone who has an eating disorder, this adds to my frustration.

But back to why I initially titled this post "Focus"... 

I am now coming up to almost 3 months of being home practically 24/7 - only going out to to get groceries from Walmart pickup, doctor's appointments, cataract surgeries (obviously) that included staying with my boyfriend because someone had to take care of me afterward, and early on, a few no-contact photography shoots. 

I have gone from being actually a little excited that I had all this "at home" time to getting really depressed to lately being extremely anxious about the future. I am very blessed in that I have been able to receive unemployment so financial issues haven't been a huge problem. However, right now that is supposed to stop the end of July, which is 7 more weeks. 

In thinking about August, even more fear than my usual arrives. I'm primarily an event photographer. Most events won't start back in August; in fact, many concerts might not start back until NEXT August - 2021. Because of lingering depression, it's incredibly difficult to be motivated to figure out what to do. 

I have been drifting for a few weeks now.  I have some ideas on how to make money instead of using photography - mostly through writing and one product idea that could be profitable. But I can't seem to figure out where I need to focus the very little motivation and energy I have each day.

Fast forward to a couple of days later... Because of my limited energy, nausea, and headaches from eye strain, I haven't been able to finish this post. I have been trying to rest and, as much as possible, not obsess over my vision issues. I'm so thankful for others, like my boyfriend, therapist, and support groups, that have given me permission to rest. The guilt and shame I feel from not being productive are so much easier to handle if I know that others empathize with how I feel and are encouraging me to take care of myself.

So, with that in mind, I'm also not going to obsess over this post. I'm not going to read over it a few times to triple-check for errors or for a better way of expressing a thought. I'm going to take care of myself and go lay down. 

(By the way, I give you permission to do the same.)

 

Blah (My Journey Between Cataract Surgeries)...

No real theme for this post, except that I'd like to just share where I am. 

Life just doesn't seem to want to let up. Almost two weeks ago my mom had a stroke. The day after that, I had the first of two surgeries on my eyes due to cataracts. The air went out at my house (at a time when I was told to NOT sweat, and I sweat even when it's in the low 70s). For many reasons, I was the only one who could stay with my mom at the hospital, which I did from Sunday until Friday all day, every day. My daughter had a big issue with her dad and I had to help mediate it. 

Yesterday was the first day I had a break. I expected to be able to rest (finally!) and just be a bum all day. 

It didn't work out that way. 

You see, even before the cataracts, I had horrible vision. When I was about six years old and got glasses for the first time, my parents told me that I looked around and said, "Wow! The trees really DO have leaves." I probably actually had terrible vision from the time I was a toddler or preschooler but just adapted really well. 

My vision was so bad, in fact, that I was the youngest my eye doctor ever put in contacts, because my glasses were so thick that he thought I'd do much better in them. I'm now 52 and I've been wearing contacts since I was 8. 

Thankfully, age-related vision problems started late for me, not like the early 40s as is typical. When they did, as a photographer, I didn't want to wear reading glasses because I would be taking them on and off with every image I took. I tried the multi-focal contacts but I couldn't get used to them (plus, they were thick and due to my extreme dry eye, I needed thin contacts). 

My eye doctor offered another solution - using one eye for near vision and one for far vision. It's one of the cool things about how our brains can adapt... when your eyes start seeing that way, your brain learns when to get most of the data from the eye that's being used more at the time. For me, because I am left-eyed (like some are right-handed), my left eye is for distance and my right eye is for near vision. 

I had a hard time adapting at first to this type of vision correction, but my brain did eventually work well with this system. 

Until it didn't.

As my cataracts got worse, my brain started relying more and more on my left eye, as my right eye had the worse cataract. Plus, I wore my glasses a lot more or didn't use contacts at all and used the tiny bit of clear vision I had about 6-7 inches from my face (no more, no less). My brain couldn't keep up with the changes. 

As the cataract surgery drew near, I went without contacts completely because I had to put drops in my right eye 4 times a day - and couldn't have a contact in when I did it. It was a lot easier to just deal with my glasses (though they weren't the correct prescription - they were old) or with nothing.

So my brain got somewhat re-trained for my eyes to work together to focus. 

Now I have a new lens in my right eye. It's still for near vision and my near vision is amazing - 20/20 in that eye. But my brain hasn't yet re-adjusted to one eye being for near vision and one for far. It's not helping that I take out my contacts at night and so my left eye is incredibly blurry while my right eye can only see up close - but then when I wear them during the day it's the opposite. 

It's amazing just how annoying this is - it gives me a slight headache and just makes me feel "blah."

Are there many other life issues that are much worse? Yes! Does this mean I'm not thankful that my mom is doing well? Of course not! But I'm still very tired and SOOOOO ready for the other surgery in a few days. Then maybe my eyes can learn to work together and I can get past all this. At least I really hope so...

Numbers

Have you ever stopped to notice how numbers define our lives?

Some examples:
- Grades
- Bank account balance
- Credit score
- Likes on a social media post
- Facebook friends
- Blood pressure
- Weight

- And with COVID-19, temperature.

Those are just a few examples.

But have you ever gotten depressed over a number?

I have thought about this a lot throughout my life. If you have read much of my blog at all, or if you know me in person, it's apparent I am extremely overweight. My number phobia probably started in elementary school when they weighed every student. It might have been done in private but I think it leaked out. Or maybe I was just embarrassed that the number might get out. But either way, I remember it as being traumatic. 

Fast forward to a little later in life... the number still terrified me. However, I didn't know that it was possible to refuse to be weighed at the doctor, or at least to turn around so I didn't have to see the number on those few instances when it was necessary for them to get an accurate number. I would actually avoid going to the doctor for something like an ear infection because I knew hearing the actual number of my weight would spiral me into depression.

I deal with clinical depression and chronic, horrible anxiety, and have since I was a young teenager. When I say that it would depress me, I don't mean that it would make me sad... it would make me want to crawl into the bed and ironically, eat. This depression and unrelenting anxious thoughts related to it could last for weeks.

I know the saying that your weight is just a measure of the gravitational pull of the earth on a scale and it has nothing to do with your self-worth. That saying is really, really true... but it doesn't help my phobia - or my depression when I do hear that dang number.

In the past few years, I have been extremely diligent about avoiding hearing that information. But one day when I had to be weighed for a medical thing, I broke my rule. I asked what the number was (after telling them I didn't want to hear it). 

BIG MISTAKE.

Now I can't unhear it. 

I even dreamed about it last night, even though this happened a couple of months ago. I can't shake it. 

My depression is beginning to lift but it took a good month. It still fills me with so much shame and embarrassment. My boyfriend knows some of my biggest secrets - I tell him just about everything - but I just can't tell him this. I KNOW he won't love me any less for knowing it... but I just can't say it out loud. 

At the moment, I'm helping my mom who is an inpatient in the hospital after a small stroke, literally typing this on my laptop in the hospital room. Being in the hospital with her brought back up this issue of numbers. For her, the key numbers are sodium level, blood pressure, oxygen level, and heart rate. The numbers have got to be in an acceptable range before she can go home, so they are extremely important. 

Because of this importance, they also have the power to cause depression. But it's the kind that's more "just" sad, not an episode of clinical depression that can last for a long time. There is a difference.

Does anyone else deal with this? I know I can't be alone in this phobia but because I don't talk about it, I don't know of anyone else who deals with it. I would love for you to comment if so.

Maybe one day we will all be able to accept ourselves enough to actually know in our hearts that our self-worth isn't based on the number on a scale. I hope so...

 

On the Merry-Go-Round Once More

It has been a truly emotional week - both good and bad. You would think I would be used to riding this mood roller coaster by now, living with bipolar as well as going through all kinds of crap throughout my life, but it's still hard to deal with.

First, the really good news... two months after I first filed for unemployment because of COVID-19 issues, I finally received it, including some (not all) of the weeks I filed in the past but didn't get anything. This has been an incredible stressor off of me, as even though I had a decent amount of money still out due to the way my clients pay me and I had a little bit saved up, I knew it wouldn't last forever. I tried not to worry, but I had a huge underlying stress every minute of every day during that time of uncertainty.

So, that's a big relief.

But medical issues... Ah, medical issues... Many years ago I wrote an article about the issue of not finding answers to my medical issues - or at least not ones that help. I updated it and posted it last year. If you go to https://www.spotlightonstigma.com/2019/09/on-merry-go-round-again.html and read it, you'll see more where I'm coming from.

The past couple of weeks I've been spinning again on that merry-go-round. I virtually saw my sleep specialist after the last failed attempt at using a BiPAP (similar to CPAP) machine for my truly horrible sleep apnea. I finally got to see a rheumatologist after suspecting I have fibromyalgia for many years. I also actually asked my primary doctor to prescribe something for the GERD (acid reflux) that she told me I have, but that taking an OTC acid reducer didn't help (hoping the prescription will help more). I also was finally able to reschedule my appointment for my cataract surgery after COVID-19 postponed the original one.

Second, the good news... I guess. My rheumatologist did confirm that I have fibro as well as an overarching syndrome called Joint Hypermobility Syndrome. Though hearing you have yet another lifelong, chronic condition isn't good news in and of itself, he does have a treatment that he uses that most rheumatologists don't.

In fact, that's why I decided to pursue a diagnosis - my daughter switched to him after already being diagnosed with really bad fibro but the doctor told her there was nothing she could do other than yoga or water aerobics to help the pain. Always before I had assumed that there was nothing that could be done about it, so why take the money and time to pursue that particular diagnosis?

The frustrating part about that good news is that there was a mix-up with calling in that wonderful prescription and I have no idea when I'll be able to get started on it. I'm hoping for one day later this week, but I just don't know.

At least the fibro diagnosis only had one frustrating part. The sleep apnea was an incredible debacle...

So, third - the pursing of an alternative to the BiPAP machine. I was originally diagnosed with both really bad Obstructive Sleep Apnea (OSA) and Restless Leg Syndrome (RLS) in 2007. RLS was able to be somewhat controlled through meds but I tried various types of CPAP machines and different masks and couldn't handle any of them. After trying and trying, I gave up. If I knew then what I know now, I would have saved myself a lot of time, trouble, and money.  But there's nothing I can do about that now.

(Note... CPAP and BiPAP are two versions of the same type of OSA therapy. Throughout this I might use them interchangeably but they mean the same type of thing.)

Then around 2014-15 I decided I'd try again. I thought maybe the technology was better with the machines or there was another new therapy that would help. The same thing happened. No matter what I did, I couldn't sleep with the BiPAP going.

This time I took it a step further... I went to an ENT. He told me I had several issues that made me a horrible candidate for CPAP/BiPAP therapy - a severe overbite that put my lower jaw too far back, a deviated septum, and a large tongue (gross to think about). Surgery could fix the first two but jaw surgery is a big surgery with a long recovery period, so that was out. Because fixing the deviated septum alone didn't seem like it would help that much, I gave up again on this therapy.

Something the ENT has stuck with me since that visit. He actually got mad... saying something like "These neurologists should never prescribe a CPAP without consulting an ENT who can sometimes automatically tell if the patient can use one or not." So all that time I fought with the machine was for nothing! I never would have been able to use it. But there's nothing I can do about that now.

After seeing the ENT and finding out about my jaw, my neurologist prescribed a custom-fitted mouthguard to bring my lower jaw forward. Getting that mouthguard was a huge mess in and of itself, which I won't go into. But I tried the mouthguard and even went back for another sleep study solely to see how much it helped. During the follow-up visit, my neurologist said that it wasn't a big improvement and since it was a pain to deal with, I also abandoned that treatment even though the mouth guard cost like $750 out of pocket. But there's nothing I can do about that now.

So... a few more years roll around and I had a routine visit with my cardiologist. He told me that there were was a brand new treatment for OSA that didn't have anything to do with tubes or mouthguards. It's a hypoglossal nerve stimulator (brand name "Inspire") which basically is similar to a pacemaker for your airway, keeping it open throughout the night.

I decided to look into this option. I got a new sleep specialist (who was the first one I really felt had my best interest at heart and didn't just want to push CPAP treatments). During our first visit, I explained my history and that I wanted to look into this new surgical option. She told me that because it was new, they were pretty strict on the criteria to qualify and at this time I wouldn't due to my high BMI (which, ironically, is probably at least partially so high BECAUSE of the apnea... sigh...)

She did, however, tell me that the technology once again had changed and would I again try the BiPAP? She also told me that the settings the last neurologist had used were way too high and it was no wonder that I couldn't stand it.

In addition, she asked why I was no longer using the mouthguard. I told her that the last doctor said it wasn't helping. She said that it was, just not enough to "cure" the apnea. This kind of ticked me off. I could have been using it that entire time and could have had a little better sleep. But there's nothing I can do about that now.

Against my better judgment, I gave in and decided to try the newest, latest BiPAP machine and ending up getting a mask that was hot off the press. I really thought this time it would work.

I was wrong.

Once again, I tried and tried. This time I also added in another mouthguard, but one I didn't have to see a dentist to get (you fit it yourself). I didn't really try the mouthguard much without the BiPAP, as I thought my jaw was part of the reason the BiPAP wasn't working. In hindsight, I should have at least kept using the mouthguard when the BiPAP therapy wasn't an option. But there's nothing I can do about that now.

I also had sinus surgery, as I knew my sinus issues were at least part of the reasons I couldn't use the BiPAP. The sinus surgery corrected one of the issues but didn't help enough for me to be able to use the machine.

Life got really busy and so I just put the machine in the closet and just prayed that I wouldn't have a heart attack due to the apnea (one of my biggest fears). I didn't want to follow-up because she acted like she had exhausted all of her options anyway, so why deal with one more doctor's appointment?

Then a couple of years passed. I thought that maybe by now they would have relaxed the qualifications on the nerve stimulator and I might qualify now. So I made an appointment with her to discuss it. It takes months to get in to see her and guess when my appointment hit?  Yes, right as the COVID-19 restrictions made most doctor's offices close. But there's nothing I can do about that now.

I had to wait a couple more months for the appointment, but thankfully I was able to get in to see her virtually relatively quickly. I suggested trying the nerve stimulator and said that maybe the standards were less now. She checked with the ENT who does this procedure. (See? An ENT consult IS needed for sleep apnea issues!)

This is where it really got messed up. She told me that they require a recent sleep study - within 3 years. My last one was too old. I haven't yet mentioned this but I HATE sleep studies. I can't sleep; I have horrible anxiety; and I am more than miserable the entire time. I had said I would never do another one. But if it was required, what could I do? I agreed to do the sleep study appointment.

She also told me that they would have to do an Upper GI to see how my airway opens and closes in order to see if I was a candidate for that treatment. An Upper GI isn't fun, by any means, but it's much easier than a sleep study.

After I got home, I realized that I might not qualify because of the way my airway opens and closes (I assumed that if my BMI was still a rule-out, I would find that out early on). So I called the ENT's office and asked if I could do the Upper GI first. If it showed I was still a candidate, then I would do the updated sleep study. After all, I had two sleep studies that showed I had it and it doesn't cure itself, so I definitely still had OSA. The scheduler supposedly asked the doctor and said that I had to have the sleep study first.

Well, the day came for the sleep study. My anxiety rose all day even though I tried really hard to keep myself calm. One thing I comforted myself with was that I didn't have to have the RLS leads, which I hate more than all the other leads combined (except the nasal cannula - it's #1).

I got to the clinic and when the tech came in to hook up the leads, she reached down to my legs. This wasn't my first rodeo so I knew what she was doing and I objected. I won't go into that whole story, but let's just say I lost and had to have them. If I had thought about it ahead of time and specifically asked my doctor to mention not to do that part of the test, I probably wouldn't have had to do it. But there's nothing I can do about that now.

I'm also not going to go into the details about the sleep study. It was just as bad as I remembered... no, it was worse. The ONLY thing that was good was that I was exhausted so I was able to sleep a little on the front end of the night. I knew from past experience that an hour or so of data is enough so I knew I had enough by the wee hours of the morning. I was able to leave at 3:00am, which was wonderful (though I was messed up from the anxiety and lack of decent sleep for a couple days afterward).

But I was glad it was done. Now I should be able to at least get to step two towards the nerve stimulator treatment, right? WRONG!

My follow-up with the ENT was two days after the sleep study. Once more, I won't go into all the ENT said, but the main point was that the nerve stimulator wasn't an option because of my BMI. WHAT?! So I went through that sleep study for nothing?!

He gave me some other options, none of which are really good options - soft palate surgery (which is mentioned twice is really painful), jaw surgery, which I already knew was major surgery with a long recovery time, and a tracheostomy, which "wouldn't be that bad because I could plug it up during the day." WHAT?! A trach?! Jaw surgery that takes literally months to heal? Soft palate surgery that is really painful (and doctors never admit that something is going to be painful so it must be really bad).

I got home and spent the day extremely depressed. That horrible sleep study (and the huge copay) may have been for nothing. As of right now, I did go on and make the appointment for the Upper GI test, just to know my options - exactly which of the procedures I would need to get done. However, I might cancel it. I already know I would need the jaw surgery and that's the one that has the longest recovery time. I just can't be off work that long. However, I might cancel the appointment and just keep praying that the apnea won't cause something like a heart attack. After all, there's nothing I can do about that now (or at least nothing I feel I'm willing to do about that now.)

And last, the cataract surgery. This blog is already way too long but I wanted to mention it. Right now the first one is four days away and the one on the other eye is two weeks after that. I'm again really nervous. Everyone I talk to says it's not a big deal but it seems like no medical procedure is simple for me. But hopefully both surgeries will go well and for the first time since I was a preschooler (or maybe earlier), I will be able to see clearly without glasses or contacts.