Friday, November 29, 2019

Post-Thanksgiving Thoughts... (trigger warning about food addictions)

The day after Thanksgiving...  I always have regrets.  Many people do.  Most revolve around eating or drinking too much, or staying out too late, or spending more on Early Black Friday sales than they should.

I have regrets every year.  Mine almost always involves thinking about how I failed at coping with the day and trying to think of ways to cope better next year.  Sometimes the regrets do include how much food I ate or the kinds of food (ie - desserts), though since I'm not a huge fan of most Thanksgiving foods, I'm more likely to eat too much pizza than during a Thanksgiving meal.

Thanksgiving is a horrible day for someone with an eating disorder.  Even though I'm technically not in recovery, as I haven't committed yet to working a program for food addicts, I know I'm close to making that decision.  I'll be honest in that I actually plan to wait until Christmas is over to do so.  I know that's not the smartest move, as one more month of literally feeding my addiction means I'll be even deeper into my addiction before I start to take steps, but I'm just not ready for such a big step at such a hard time of year.

That didn't keep me from thinking about how it will be different next year - and the rest of my life.  The Thanksgiving foods that I do tend to eat are probably ones I'll have to avoid in recovery.  I'm 99% sure that desserts will be out, even on holidays.

I went to a support group meeting this week and of course, they discussed Thanksgiving.  It's probably the worst day of the year for most of those in recovery.  The summary of the meeting was that the main thing to remember is that Thanksgiving needs to be more than about food - it needs to be about the people you share the holiday with.

Okay... that's a problem.  I also have social anxiety disorder and bipolar disorder.  To be frank, I eat because I don't want to be social.  It's a way to cope.  Yes, it's an unhealthy way, but it's the best way I know how in that situation.  I also cope with social anxiety by bringing my camera and shooting the get-together, but most people don't like having their pictures made while eating, so I can't really do that then.

The bipolar disorder just means it's hard to plan for the day.  If I'm manic, I tend to be better on the social anxiety front.  However, most of the time, my mania is not the fun, euphoric kind.  I almost always have dysphoric mania, which is basically anxiety mixed with mania.  (Note... it's not a fun day at the beach).  So if the anxiety is overwhelming the mania, I may talk to others but then I constantly worry that I sounded stupid with what I said.  If I'm depressed, well, of course, it's hard to deal with people as it was just hard to get out of bed and get going.  My depression also always includes at least a little anxiety too, so when I don't talk to others, I worry about the repercussions of not being social.

I am learning that my food tastes and habits change according to my bipolar cycles also.  I literally have had the same food taste different depending on if I was depressed or manic.  So that, of course, plays into a plan for attacking the "How to Cope on Thanksgiving" food issue.

I talked to one other person with an eating disorder who purposely shows up late so that she doesn't have to deal with the eating part of the day nearly as long.  I thought that was a genius idea until I tried it... and realized that my ethic of being on time is so ingrained that I felt horrible for doing it.  Maybe with time, I'll realize that putting my needs above the societal norms in this situation is the healthiest and best thing I can do for myself.  I'll just have to work on it.

My family is well, family.  Just like I do, they have both good and bad traits.  But for various reasons, I don't feel I can talk about my mental health and addiction issues with my family.  I know for a fact that they don't understand or really care to try to.  Family gatherings are one of the places I feel very stigmatized.

I am thankful I now have my very supportive boyfriend there with me because in the past I always handled it alone.  But even with him being there, I still felt like I need to apologize for my existence. I know that I have these mental illnesses which makes me not a lot of fun at parties... I know they aren't my fault.  But I'm still learning how to handle it when I know this but no-one else does - and they all blame me for being a downer.

No matter what, I'm glad it's over.  I know I handled it badly... I was moody and I'm sure I wasn't fun to be around until later in the afternoon, after I got my camera out, ironically.  (It honestly didn't help that I woke up with a horrible headache; I can't shake this cold I've had for weeks; and that I felt generally cruddy when I got there, but I shouldn't have let all that rule my day.)  I guess at this point I need to just know that there's nothing I can do to change yesterday and to hopefully remember some of this when it comes to Thanksgiving 2020.

Sunday, November 24, 2019

A New Diagnosis... and Hope

I have mentioned my daughter on this blog several times.  I have several mental and physical issues that I deal with... my daughter has more.  She has fibromyalgia, dysautonomia, generalized anxiety disorder, major depressive disorder, and has a few addictions.  This semester at school has just about taken her out.  It has been very difficult for her to deal with, to say the least.  But Friday something happened to give us hope...

Her old rheumatologist was a wonderful woman and we are thankful for her helping us figure out what was going on.  However, she is pretty old-school and has resigned herself to saying that there's nothing that can be done for the pain of fibromyalgia, except for narcotics, which she won't give to a young person, especially one with a history of addiction.

This all makes sense but when my daughter is in so much pain she can't make it to class AGAIN, I always have to wonder if there is the possibility of something else out there that could help her.

Well, after the debacle of trying to make it through this semester, I became determined to find someone who could at least attempt some type of intervention for her pain. I asked around for recommendations (and was pretty discouraged by hearing that most people weren't getting help).  However, there were a few doctors that I heard about that I thought we could try.

The first one not only seemed promising, he was in my area of town.  So we did all of the work to get a referral sent to him by her primary and then we tried to make an appointment.  Many messages were left before we finally found out they don't even treat fibromyalgia.  So it was back to square one.

Another round of trying to figure out which doctor we wanted to try.  I settled on one, made sure insurance covered his office, and then got another referral.  Most rheumatologists have a several month wait for an initial appointment, so I wasn't holding my breath that she would be seen before the end of the year.  I was wrong.

My initial call for an appointment was I think last Tuesday.  I about fell out of my chair when I heard the receptionist say that someone had canceled and there was an appointment available this past Friday.  WHAT?!  I was so excited. 

It was a relatively early morning appointment, which is really hard for my daughter right now, but I told her I would drive so that all she had to do was get up and put clothes on and stumble to the car.  So Friday morning arrived and we left.

It was hard to find the office and it had been there awhile - it had that tired look about it.  On the surface, I wondered if this was the best choice.  But then my daughter noticed some of his awards - things like "Best Doctor in 20..."  He had received many.  I again had hope that maybe this could be good.

My daughter went back for vitals but then came back out into the waiting room.  I had read some reviews and they all said the wait was long but was worth it, so I was prepared for that.  It was long - but oh, it was so worth it.

We finally got back to a room and the doctor came in.  He was older and seemed nice.  He sat down at the desk in the room and started asking my daughter questions.  It wasn't like an interrogation - more like a get-to-know-you kind of thing - but the questions seemed pretty random.  He never mentioned her current conditions or asked about her pain. 

After maybe 3-5 of these seemingly random questions, he opened a desk drawer and rifled through some papers.  He pulled one out and handed it to us to read.  It was a condition neither of us had ever heard of and a list of symptoms/associated diseases. 

He went back to asking questions but we could see he was asking about the items on the list.  She either had almost every item or had something similar.  It was so strange because many of them didn't seem to be related.

So she has a new diagnosis: "Joint Hypermobility Syndrome".  It really doesn't tell us much as far as treatment goes, but it's interesting how all of these unrelated aspects of her health actually go together.

So that was interesting but the information given really didn't tell us what could be done to help her go back to school without major pain. 

Then he said the words we both had been wanting to hear but didn't think we ever would... "I have something that should help."

I almost fell out of my chair.  What?!  There's a medicine that will actually help her?  While he talked I didn't know what to do - part of me wanted to cry with relief, another part wanted to shout, another wanted to get up and dance.  I ended up just sitting there with tears in my eyes, listening.

He explained that there's a non-narcotic pain reliever that works for those with fibromyalgia at really low doses for some reason.  It is a compounded medicine so insurance won't cover it, but it's not that expensive.  Most big chain pharmacies don't compound medicines but thankfully the local one we use does.

We weren't able to get the prescription turned in until the end of the day Friday and they don't do compounding on Saturday so tomorrow is the earliest we can pick it up.  Over the weekend, the doubts began... what if it works for most people with fibromyalgia but not with her?  But I worked really hard to quelch those doubts and hope.  It will take a few weeks because you start on a low dosage and move up, but maybe, just maybe, it'll work and she'll start to be able to actually live without pain.




Monday, November 18, 2019

When Those You Love are Hurting

I write this blog from both the perspective as someone who deals with these things personally and as someone who has several loved ones who also deal with these issues.  Right now the latter is tearing me up inside.

My daughter has several health issues - mental and physical.  As anyone who deals with these issues knows, the mental makes the physical worse and vice versa.  In other words, anxiety from an anxiety disorder can cause physical pain.  If you already have a condition that causes pain, like fibromyalgia, add anxiety to the mix and it's a lot to deal with.

She is currently in college and was hoping to do something really special next semester - one of her big dreams.  However, this semester has been truly horrible for her. 

Right before the semester started, she hurt her back badly - so badly we thought for a while that she would need surgery.  Instead she "just" needed physical therapy 2x-3x a week by a specialist in this type of injury... and the only one in our area was over 30 minutes each way from our home.

Due to fibromyalgia and dysautonomia that she deals with, mornings are very hard for her in the best of circumstances.  Given her extreme back pain on top of it and having to take time for physical therapy and... let's just say that she started off already behind in her classes this year, missing many classes and being in so much pain she couldn't concentrate on schoolwork.

As soon as she started getting behind, the stress started mounting.  The added pressure of getting ready for the study abroad experience she has hoped for years she would be able to do added stress, which increased the pain and symptoms of her health issues.  Then the pain increased her stress.  You can see where this is going...

She has stumbled along, fighting with everything in her, to even barely make it through this semester.  Even with all of the work she has done, her grades right now are pitiful.  She's an A/B student and it's entirely possible she'll fail, even though she's worked her tail off.

It's...
Just...
Not...
Fair...

Due to miscommunication, not caring, or just not understanding, her professors this semester have added to the struggle by not following her accommodations that were already set in place.  Her medications aren't the right ones, or aren't enough, but she's been struggling so much to deal with school that she hasn't been able to focus on getting those corrected.

I have been stressed and hurting along with her.  It's been a real roller-coaster ride - where we thought she would get to go and then something would happen that would put a kink in the works.  Then that would work out and we could get excited only to have another kink.  I can't tell you how many times this has happened this semester concerning this experience.

So last Friday she finally committed to going no matter what.  I got in high gear and finally started on all of the many details that we have been planning but were waiting for a final confirmation before we actually started doing.

Then everything changed.

I don't want to go into detail on how it happened but Friday afternoon she realized that even though she can go, it just might not be the best thing for her to go.  Because I know how much she's wanted to go, I know I've pushed her, probably more than I should have.  I thought that if she could just make it there, everything would somehow be okay.

With this realization, I felt like my heart was being torn out (because it's all about me, right?)  Really, I just hurt so much for her, knowing that this dream could come to an end because of these stupid diseases that we just can't get a handle on.  Co-dependent?  Of course, I am.  I'm a momma.  When she hurts, I hurt.  Maybe one day I'll get healthy and get boundaries and be able to handle it better when she hurts.  But for now - I'm a basket-case.

I have been all weekend.  I was already in a low cycle with my bipolar disorder and can't seem to get rid of this stupid cough, which exhausts me on top of my regular always-tired feeling.  So I especially haven't been in a place where I could separate myself from her pain this weekend.  But feeling her pain isn't helpful because I couldn't take it away... she was hurting too.  And I know there's nothing I can do about it.

Sometimes I get so bitter about the fact that my little girl can't just be a regular college kid.  She has to put so much energy into just getting through life, she has nothing left for fun.  But even with all that, she gets lumped into a group with the college kids who just party and don't care about class... I know that's at least a partial factor on why her professors don't cut her more slack.

Anyway, today we gave up.  She hasn't made the final decision, but it looks like she is going to ask for incompletes this semester because trying to get everything done before finals is stressing her out so much that we are seriously worried about her possibly having a complete breakdown.  Then most likely she is going to take the next semester off from college completely, to get her health straightened out.

With this plan, the hope is that she will go back to her current college next fall and will be able to attempt again to do the study abroad experience the next spring.  This will put her a year behind on graduating from college, but she will still get to fulfill her dream.

I wish so much that I could just fix it - make it all go away.  In the meantime, even though I fail more than I succeed, I'm going to keep trying to be supportive of both her health needs and her dreams... and try my best not to let the supporting her dreams get in the way of her health.

Saturday, November 16, 2019

Failure?

It's been a very busy few weeks.  I'm a professional photographer and when the work is there, I have to take it.  Who knows when I'll get another job?  In the past two weeks, I have been blasted with work, which is a good problem except that I totally wore myself out and got sick.  I've had a bad cold for the past week and it continued through a massive 3-day out-of-town shoot I had earlier this week.  When I got back home I hit the bed and haven't been out of it much since.

Today I decided I wanted to get out of the house.  I really don't think I'm contagious and my coughing is at a minimum, especially when I'm sitting up, so I wasn't worried about infecting anyone.  So I decided to go to a social activity I've been looking forward to attending for a few weeks.

Background... One of the things I've been doing lately is learning sign language.  This is something I've been trying to learn since I was probably about 10 years old but for various reasons have never been able to get fluent.  Even though this is an extremely busy time of my life, I found a wonderful (and free 😉) ASL -American Sign Language - class at a local church and it's been so much fun finally being able to feel confident enough to talk to those who are deaf.

Recently I started attending the Deaf Church held at the same location as the classes.  So far I love it.  It's small and the people are very friendly and extremely patient with my bungling ASL.  Well, this church was invited to eat Thanksgiving dinner with another Deaf Church in the area and I was told they would love for me to come too.

It was today.  Actually, it's still going on.

Obviously... I'm not there.

I went.   I'm proud of myself for going.  My boyfriend was supposed to go with me but he had something else he had committed to that he remembered at the last minute.  I thought I had met enough people from the Deaf Church that I would be okay going by myself.

But when I got there and saw not one person I knew, it was too much.  I hid in another room for about 30 minutes while I texted a couple of those I had numbers for and tried to get my courage up enough to go in.  When one said she wasn't going to make it and the other didn't answer, I decided I couldn't do it and left.

This has happened before - it's not just because it was a group of people with whom I would have to work at communication.  Two times come to mind: 1 - I went alone to a Christmas party with people who had been dear friends for years.  I don't know what triggered it, but I ended up hiding in an unused room so that I could cry and be alone until I got up the courage to leave.  2 - I went alone to a Women's Conference that I had heard wonderful things about.  I did okay for the sessions because I could sneak into the back and just listen, but when it came time for lunch, I couldn't make myself walk into the room and sit with a table of strangers.  I had a small panic attack in a side room before the main eating area started to clear out and then I was able to go in and eat.

The obvious common denominator of these 3 instances is that I went alone.  However, it's happened before if I've been with someone.  So that isn't it.

I realized about 10 years ago that I have social anxiety disorder.  When I read the description it explained so much!  But at the time I remember wondering why there were those times that I was almost paralyzed with fear in a social situation and why other times I was okay.  (I was never "great", but I could hold my own in some instances.)

About 6 months ago I was diagnosed with Bipolar Disorder.  After learning more about the characteristics... Mind blown!  So much more made sense at this point, like an answer to the "why" in the above scenario.

Back to today... not only am I in a low cycle with the bipolar (in other words, depressed) but I also am coming off a physical state of exhaustion from illness and overwork.  I knew this when making the decision to go.  My desire to get out of the house and try to be social overcame my fear of it not going well.

So maybe it's not actually a failure.  Yes, I wasn't able to stay.  Yes, I ended up in a room by myself crying when others were socializing.  Yes, I drove 30 minutes there only to turn around and drive 30 minutes back home without getting to use my ASL skills, learn more signs, or meet some wonderful people (and possibly even have fun).

But I did go.  I didn't stay in bed and worry about whether I could do it or not.  I wasn't paralyzed before even getting out of the door (which has also happened in the past).  So even though the day wasn't exactly the success I had hoped for, calling it a failure isn't right either.  It's just one more step in getting better... and that's okay.