HOT HOT HOT

It is SO HOT here this week.  Normally heat doesn’t bother me, I don’t know if my meds are affecting things, or what but this is crazy.  Absolutely nuts. I am so hot, hubby is hot, big one is hot.  Which makes for an interesting dynamic because we are all grumpy.

We don’t have air conditioning, it’s a waste of money since in our area we have less than a week with unbearable temperatures. So we just have to ride it out, and pray no one kills the other 😉

I wish my hair was longer though.  It’s just too short to put in a ponytail, and just too long to not be on my neck making me even hotter. I bought some head wrap things to use but when I take it off I look like a crazy person- on second thought maybe that fits me just right ;).

I just finished book 2 in a series that Richard Paul Evans has written- the first book is The Broken Road, the second is The Forgotten road, and when I got to the end it left me on a cliffhanger and book three The Road Home won’t be out until Spring 2019!!!! I was grrrrrr but it’s something to look forward to.

I am now reading a book “Surprise Me” which is good so far- though a little slow to start and listening to America’s First Daughter, about Them Jefferson’s daughter.  I just started last night but I found it very difficult to fall asleep because it was so good!

I’ve read 35 books since January 1st, so if you are looking for recommendations hit me up.  And if you have any recommendations please leave them in the comments.  I don’t like anything scary or bodice ripping romance.

Until next time….

I’m a Coward

I’m currently hiding in my bedroom with my dogs… I left my brewing tea downstairs… my son has a friend from school over. Someone I’ve never met. I’m so not cool with it.

Hubby is irritated with me because I’m “hiding”… but I see it as a form of self preservation. My OCD is at an all time high today. During church I had to use a antibacterial wipe on my shirt because the kid behind me touched my shirt. I had to shower because we went to church. I have changed 3 times since coming home because of different contaminants.

It seems like lately I have been in hand washing loops as I call them. I’ll wash my hands, get 5 paper towels, dry my hands shut off the water with said towels, open the door with the towels, shut off the light with the towels, throw the towels away- then have to start over and over again. Sometimes it happens right during DBT. There’s a sink in the room and I will just wash over and over and over.

I hate getting stuck in these loops. It’s irritating to my rational brain, and it makes me feel like a lunatic.

So yeah. I’m hiding in my bedroom. I can’t meet anyone new today.

So Many Titles…

I had so many different ideas for what to title this blog. But none of them felt quite right.

First of all, I have been reluctant to post- (disclaimer: this part is about a comment on my blog- but has nothing to do with the poster of said comment, nor does it mean I am upset with the commenter)- because recently after a more positive post a comment was made that it was nice to see something positive posted. Immediately I clammed up.  I felt like “crap, people are sick of my problems”.  But In the end I decided to just take the comment as I know it was written- as a message showing happiness for my fleeting moment of positivity.

I struggle with constructive criticism, I over analyze what people say.  What everyone else thinks means more than what I think.

But I can’t hold this all in any more.  This has been a hard week.  I can’t give you a reason, because I don’t know. I have been sad and depressed all week.  Like major regression in my symptoms.  My OCD has been over the top- to the point that I offended a person in my DBT group because I moved my seat when I heard that she had been sick- and so I explained to the group if I do stuff like that, it’s me, not them.

And I’m just tired. So tired. Tired of this life.  It never gets better. It seems like I stand up and a big bully pushes me down, over and over.  And I am tired of getting up. I have tried so hard in the past month to try to do things to “make me feel better “.  But it doesn’t work.

And I have found that even dreaming about possibilities has it’s consequences.  I keep thinking about Marilla Cuthbert, and the things she used to say to Anne when Anne would let her imagination run wild, have romantic notions etc.  It’s not practical.  It’s not useful.  Never in my life has there been anyone who encourages me to dream.  They just point out the reality.  “I get it mom I will never be on star search” (6 or 7 year old me),  “I get it (insert name here) I am not as pretty as (insert name here)” (14-16 year old me).  “I know I will never amount to much dad”.  “I know I don’t shine mom”.  “I know I can’t manage money because I have a shopping compulsion- maybe it shouldn’t be my responsibility.”  “I know my bucket list will still be undone when I die”.

I get it.  This.  This is it. It’s never going to get better, and I will stop dreaming, hoping and wishing for it to get better. I see now that it does no good, because I will never change, I will always be a compulsive overeater, with a shopping problem, and a mental illness. I have always, and will always be weak.

When I was a kid my best friend and I came up with a phrase:

“Reality is too real for us, we live in the abstract”.

Looking at it with 30 or so years of knowledge I didn’t have then- it really was more like- our reality sucks, so we choose to wish/hope/dream of how it will be better “someday”.

But I think what I have learned over the past 2 years since my breakdown- for some people- someday never comes.  For some people, it’s scraping by, barely keeping your nose above the water line forever. For some people- they’ll always wonder “what’s the point?”

And if all that isn’t enough- the school isn’t following the IEP as written for my oldest.  Here we go.  It’s giving me PTSD flashbacks of our last fight when he was in 3rd grade, and I don’t know if I have it in me.  I don’t know if I can do it again…..

Saw Mary Poppins this week.  She added another med to my list. A mood stabilizer… probably a good idea.  Ive had 2 panic attacks in the past 2 days.  It’s been a couple months since I had a full on attack.  The craps hitting the fan again and I don’t know where to hide to dodge all the crap coming my way…..

Sorry for the downer post.  I just can’t keep it in anymore….

Saw the Endocrinologist

So I saw my endocrinologist today. She was actually really nice. I was ready for her to read me the riot act. Instead she had some weight loss suggestions for me.

So I wrote out my entire story to try to figure out what’s best… so here it is- sharing it as a way to process it. Any suggestions please share them….

I’ve struggled with my weight all my life. I have had an eating disorder since I was in 4th grade. I compulsively overeat. I hide what I eat sometimes. I’m high school I became anorexic, I lost about 100lbs, and was down to 118lbs (and of course thought I was fat). After getting counseling, I maintained for about a year. I went to college in 1996 and gained a bunch of weight freshman year- like 45lbs. When I got married in 2000 I was 218 lbs. By the time I got pregnant in 2002 I was 225, I gained about 18 pounds with my pregnancy.

When my son was 2 years old I started eating better and working out so that we could do another IVF cycle with our frozen embryos. I got to 199, the cycle failed and a deep depression set in. I also had an IUD put in to stop continuous bleeding. I gained 35 pounds in 6 months, and turned to my “friend” food, as usual. In 2009 I was back up to 235. My sister was getting married so I did slim fast and got down just under 200 again. 2 months after the wedding I got a surprise – I was pregnant. I was around 235 when I delivered and stayed there from 2010 until Jan 2013. I was about to turn 35, my dad was 39 when he was diagnosed with type 2 diabetes. I felt like I needed to make a change. I knew I was facing an uphill battle, food was my comfort. I had a great deal of stress in my life including the fact that my son had been diagnosed with Aspergers, anxiety and bipolar.

I started counting calories, and started the couch to 5k. Added spin classes, and kickboxing. I went from 235 to 143 – 8 pounds from the goal I set for myself. As usual I felt fat. I ran my last 5k in November 2013. My best time just over 30 minutes. It was about this time that my husband became sick with some mystery illness. He slept all the time, he hurt all the time. And in came my best friend – carbs, sweets, food. I quickly gained weight again and was around 190something. Depressed and hating myself. In July 2015 I started beachbodys 21 day fix. I did 5 or 6 cycles and was down to the 150s. By this time, my husband had been sick for almost 2 years, he was trying to make a go of it with his own business, so that he could control his work hours etc. But we were in the process of losing our home and our car.

And so that’s where my weight loss stopped. I am currently sitting at 254/256 pounds depending on whose scale you look at. The biggest I’ve ever been. I have been diagnosed with GERD, Autonomic Nervous System Dysfunction (long story on what that means but it was affecting my heart my resting pulse was ranging between 140 up to 160), major depressive disorder treatment resistant, recurrent, anxiety, PTSD, OCD, and unspecified personality disorder. I have PCOS and am prediabetic. My fasting sugars are always over 100. In the past year my A1C has gone from 5.2, 5.4 to 5.6.

Today I met with my endocrinologist and she expressed concern about the fasting numbers, the fact that metformin made me violently sick, and that A1C numbers are creeping up. She suggested I either enter a medical weight loss program at the local hospital with diet, exercise and potentially appetite suppressants. Or to see a bariatric surgeon. She is going to refer me to both places and wants me to make a decision.

I’m torn. Do I try it on my own again? Do I do the medical program (my husband says his concern when I leave the program I will go back to old habits- and he’s not wrong), or do I go for the surgery?

I’m scared about all the options. I have failed every time I did it on my own. But the surgery is a huge deal. And is this really the time to do this- when I’m going through so much psychologically? Or is this the best time- will it aid in my recovery? I plan on talking to my counselor about it all, but of course I will overthink this to death until then.

What to do….

What’s wrong with me?

So I mentioned my newest diagnosis, and I mentioned that I weaned off the amitriptyline in hopes that would help with the symptoms of the Autonomic Nervous System Disorder. However, it didn’t help.  And they have started me on a new antidepressant- Doxepim. I am on a very low dose. And ever since we have started the Doxepim 10 days ago I have been angry, irritable, sad, frustrated. I haven’t been the nicest person, nor the easiest to be around.

I am unhappy.  I am not content.  I am tired of living hand to mouth with no end in sight. I am on disability, my husband is waiting for his disability decision.  We will never have financial security.

And it really ticks me off that you can’t be honest with even your therapist or else she thinks you are on foot in the grave to offing yourself. So I am resentful- of pretty much everything and everyone in my life (with a few exceptions).  I am tired of this life.  So yes I fantasize about ways I could die.  Today’s version in my head has me walking out to the car, slipping on the ice, hitting my head and never “coming to” again.  But I can’t tell anyone that, they try to make me think “positive”, “look for the blessings”, and to that I say (and please let me warn you have to take off my Christian hat for a minute) go to hell. Seriously.  Shut up and leave me alone.  Just go away. Leave me alone with my intrusive, unhealthy thoughts. I don’t think I want to change right now. I think I am better off being miserable, because my life sucks, period, end of story.

And then. Then… get this. I get a call from my PCP’s office.  From “my doctor’s” nurse (I have been seeing a different doctor in the office.  And she says “we got the results of your halter and you had a normal rhythm with some extra beats here and there, but it was essentially normal ok?”.  And I was like ACTUALLY…I was in there last week, and Dr so and so, read the draft report and reported that my heart rate was 150 several times, and ranged from 120-150 most often.  And that my diastolic blood pressure is ranging from 87-117 and she diagnosed me with Autonomic Nervous System Dysfunction. And she’s like oooooh yeah I see that here.  Dr PCP may not had seen that before this came across his desk.  And then she proceeded to explain to me how to increase the meds etc. UM HELLO I thought you said I was fine?  Yeah I know Dr PCP blames it all on the fact that I am fat. This is also the same PCP that said a vitamin D level of 15 was just fine (I guess I should just die because I am fat. I am so angry and sick of this BS.

Why do I even bother.   Maybe I should just go off all my meds and just see what happens because I am done.  Nothing I helping anyway, and maybe if I go off the heat stuff my heart will just get to be as tired as I am and be done too.  I am just so exhausted, hopeless and done.

Yesterday at church my pastor was talking about “spiritual Sahara”, and that’s where I am right now.  He said when you are there hope evaporates and dreams die. I couldn’t have summed up my life right now any better.  My hope is dried up and dead, and my dreams are ran through a garbage disposal, put in a trash compactor, flushed down the toilet and sorted out with all the other solids in the waste water treatment plant.

Yes this is a pessimistic post.  Yes, its me throwing a pity party.  Yes its me being angry, resentful and tired of living my life.  But guess what, it’s my blog and I’ll bitch if I want to.

 

 

Another Diagnosis?

MAKE IT STOP………

I went to my primary care doctor today to discuss the results of my cardiac halter monitor.  So when I got there, they did my blood pressure and my heart rate, my blood pressure was 122/90.  90 not good.  They left my heart rate monitor for a while- it went up and down and up and down, the lowest was 120 and the highest was 141… not good :(.  Then they had me sit in the exam room FOREVER— like 30 minutes. Finally the doctor came in and she had the “draft” of my cardiac halter results…. because the cardiologist hasn’t “finished it yet”. But she was able to give me the results.  She said there was A LOT of fluctuations in my heart rate all the time. Nighttime it would go down to like 63 occasionally, but during the day it remained over 100 and went as high as 150 beats per minute.

She asked me if I had ever been diagnosed with a couple different things (I hadn’t) and then she asked Insulin Resistance, and I said yes to that one.  I have had that for 21 years.  Anyway, so she said they aren’t POSITIVE because there is no one test that you can do and say “yep that’s it” but from my readings and my symptoms, the believeI have Autonomic Nervous Symptom Dysfunction (ANSD).  How she explained it was basically you have your fight or flight side and your rest and digestion side, and they are supposed to be in a very specific relationship.  And when you have this issue the transition from one to the other is choppy and not smooth.

From the little bit of reading I have done it appears this is a life long condition that the doctor’s basically help to control the symptoms but they can’t “make it go away”.  If they can find an underlying cause of the condition (Parkinson’s – I don’t have, Diabetes- according to my endocrinologist I don’t have (yet)) and thats all I can remember then they can control those conditions and the ANSD will get better.  What it seems though is that once the nerves are damaged the don’t heal.  And what’s even “better” is that anxiety with this is not a good combination- YAY! (NOT)

I asked if my ECT treatments could have caused this since my heart rate and my blood pressure didn’t go haywire till after that.  And she said it’s not out of the realm of possibility, but there aren’t currently any evidence to support that.  And looking at the symptoms, some of them I have had for years.  But it wasn’t until the heart rate issue that it became more of an issue.

I still have a ton of reading and researching to do, and I start a new med tonight… WOOHOO another one to add to the regimen. Apparently this is a big deal- there are support groups and some people get symptoms so bad they are disabled.  Fun fun fun. When will I catch a break??????

 

Poverty

People in Poverty: A part of the general population of a given area, who do not have adequate resources to live fully independent lives.  These people tend to need help in the areas of Food, Healthcare, Education and sometimes even cash benefits (as in TANF-Temporary Aid for Needy Families).  Also a part of the general population that many people discriminate against, make unjust assumptions about, and have attitudes that cause those in a state of poverty shame.

This was my definition.  I didn’t look it up.  I spoke from my heart and my experience. My family is poor.  Am I ashamed to say that? A little. Am I ashamed when I pull out my electronic benefits card (EBT- not sure what the T stands for) to pay for purchases of food, or other things because we collect TANF?  Yes.

I am mentally ill.  You all know that.  I have recently added personality disorder to my ever growing list of mental ailments.  So that would be major depressive disorder, severe, recurrent, treatment resistant; OCD; PTSD; Trauma; Severe Generalized anxiety disorder. I can not work. There are days I can’t leave my house.

My husband is sick.  Do we know exactly what’s wrong with him? No. He has seen so many doctor’s but it always ends up the same, herniated disc at L5S1, some sort of cyst on his S2 vertebra, desiccation of the L4 disc. Fibromyalgia, migraine headaches, major depressive disorder, and I can’t remember the rest of the list. But it’s long.

My husband first became sick in Oct 2013.  He continued to get worse until June of 2014, when he was working at a car dealership as a mechanic and almost dropped a mustang off the lift.  It was at that point he realized he shouldn’t be working.  His exhaustion and pain were too intolerable. He went out on short term disability, and eventually lost his job.

We looked at the bright side of it, and he started his own business in January 2015, and tried really hard to run it all alone for 2 years 2 months.  He was successful, turning a profit each of those years, however, the pain and exhaustion worsened, the depression at his situation worsened, he herniated the disc, and in March of 2017 decided he couldn’t keep up and he closed the business.  This was a blow to us.  Financially of course, but also emotionally.  I still tear up when I drive by the place, or think about the stack of business cards he has.

Today he went to see a new rheumatologist.  She was rude, condescending, unaware of his medical history, and made snap assumptions.  Just because she never received a copy of his two most recent MRIs she basically told him he was a liar.  She told him that “chronic pain” is subjective and he should go back to work, and work through the pain.  This all within minutes of meeting him.  He feels she looked that he was on medicaid, and out of work and therefore poor and lazy.  She said he doesn’t have fibromyalgia despite the fact that she didn’t even examine him or do the pressure point test.  Despite 4 other doctors diagnosing him with fibromyalgia.

To say I was angry about this appointment is an understatement.  But there isn’t anything I can do about it.  There is nothing he can do about it.  I am so sick of the rhetoric that vilifies the poor.  We are not all lazy, free-loaders.  Some of us are fighting physical or mental battles that you can’t see.  You all know what they say about assumptions….

We are still waiting on the decision for disability.  We’ve been waiting for almost a year. I know this can be a long process, but after today’s visit we are discouraged and just want this all over.

I know I have said it before, and probably a lot lately, but this is not the life we planned for.  Not the life we imagined when we were two young starry-eye kids planning their future. Never did we think we would be poor, we didn’t imagine to both be disabled in one way or another, we didn’t imagine so many things.

We are trying to adapt, to find new dreams, but it’s hard in the face of the adversities we have encountered.  We are trying to just trust in God and His perfect plan.  But when you are kicked repeatedly and you are already down, it takes it’s toll.

And for me that looks like indulging in one of my three compulsions- self harm, spending money we don’t have or compulsively eating.  Today my drug of choice was self harm.  The insides of my lower arm are carved up.  Im not sure why physical pain helps when I am hurting so badly, but it does, for a little while. And now a several hours later, the anger has subsided some, but a deep rooted, soul-crushing sadness has overcome me. I wish that we would catch a break, we need it.