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I’m turning 30 in just under a month

I try to always set New Years Resolutions. I do it mostly for fun but this January is a milestone for me. I’ll be turning 30.

I know 30 doesn’t seem old to many people, but I thought I’d be further along than I am. I feel like I’m right back at 19. I’m working back in retail (not by choice- I went in to skin care but the highest paying job I found was retail)

All my early adulthood, I wanted to be married, 2 kids, own a home and have my dream career. I’ve been married 7 years, have the two kids (technically 3) but we rent and I work a job- not a career.

At 19, I dropped out of college, got into an abusive relationship and was stuck until I finally got away from him at 21 and ended up homeless. I bounced around from couch to couch and ended up on harder drugs. I finally woke up and cleaned up, moved back with my mom and dad and got a stable job.

At 22, I met my husband. We fell in love fast and were married in 3 months. Our oldest daughter came along a month after we eloped. (we celebrated our 7th anniversary last August, so I definitely do not regret marrying that fast nor that young- he was 10 days past 20 when we eloped and he also has no regrets). At 23, I lost the job I had and went to school- the plan was to take the six month course, graduate then the baby was due shortly after graduation, then I was going to take 6 weeks to recover and start searching for a job. Instead, she came half way through the course and I had to take maternity leave. I went back and graduated almost on time (stacked up hours before and after she was born- it was a 600 hour course) while she was still in the NICU. She had to transfer to a different NICU in a different state right after I graduated so I went on to live in the NICU room (and Ronald McDonald House) with her while my husband and parents visited occasionally but all three worked. During that time, I started loom knitting and making earrings to deal with boredom from being alone while she slept and with the hats, Bethcessories was born but not well thought out. It was just put on Etsy and forgotten. After she came home, we took her out grocery shopping one time, she got sick and ended up in the PICU and on the vent. It was that moment (along with some bad experiences with a few home care nurses) that made me realize I’d be unable to work and put her in daycare and at that time, we were unable to find jobs that would allow us to work around each other’s schedules.

During that time, I found I was unable to get into the local colleges but was able to get the financial aid restriction lifted at the college I left but I’ve had the major issue of- do I want to go into debt for a job that doesn’t pay well but I am passionate about or do I want something I don’t really like much but makes more money?

The logic vs emotion disagreement has had me torn apart and is why I’ve successfully been re accepted 4 times, had almost everything planned out perfectly but then one tiny thing always falls through.

The very last New Year’s Resolution I kept was back on January 2, 2010- I promised myself I’d stay away from all drugs and as of right now, I’m going on 8 years clean. It’s something I’d be proud of- if it was a challenge, but it was my way of dealing with the trauma of what happened to me in those two years and lasted such a short time, it was very much against everything I have ever stood for and due to my nature, I know I’ll never be tempted to go back. It feels like it threw off my life path and since then, I’ve lived in regret and even shame that it happened. I know it’s me holding myself back from my goals but it feels like that one year threw me off so bad.

 

Most of what I have wanted to do ended up being dead end or low paying.

My cousin got a Bachelors in what I was originally wanting to get into (interior design), spent a year out of college (my senior year of high school) and couldn’t find a single job- back when the economy was better so I changed my mind.

I started off in communications (journalism) then switched to marketing before I dropped out.

My first job was writing for the local newspaper in a teen section they had weekly. I loved going to the meetings, doing the interviews and writing the articles. I had a friend who did it professionally (a huge dream) but it was lower paying. I went to beauty school to get into make up artistry (it’s always been a dream to either write for a fashion magazine or work behind the scenes at a runway show, now I’m too old to get into that. I’d be in my mid 30s by the time I graduated and I’m sure most places want an early 20 something fresh out of school to intern and I only studied skin, most make up artists need to be able to do hair as well, I believe)

I’ve read so many blogs and articles on so many different websites that seem to reinforce the fact that women are pretty much useless both career or otherwise after they hit the mid 20s, that what you make in your 20s is the highest you’ll make and if you’re not lined up to move up in your career by the time you’re 30, you’re screwed so it does kind of give me the mind set of “why bother?” I wouldn’t say I wasted my 20s. I loved staying at home with my oldest, I wanted kids young and the biological clock is a real thing but now I’m out of that stage (I very happily signed to be sterilized after my third c section) and as my youngest gets older, I’m thinking more seriously about career (the plan- first kids and focus on education then focus on building career while kids are older and in school. I didn’t want to have to freeze a career for 6 weeks to go on maternity leave- it happened when I was in a salon and it killed the career I was starting to build but I also wasn’t a proper fit in that particular salon)

People always tell me to not plan so rigidly- that life always throws curves into plans, but trying to have a plan is one of the best ways my ADHD mind is able to focus.

I had another plan to have my main work ready to send to try to get traditionally published by the time I was 30. Thanks to my OCD perfectionist personality, I literally spent 4 years editing the same 3 pages and am no closer to finishing it than I was when I finished the rough draft (the story is fully written from front to back- but I want this one traditionally published so I want it perfect). Once again, I had friends who have been published telling me I needed to stop being so hard on my work, stop overthinking and to not have such high standards for myself. My new goal is to have it ready by 35. I actually have several others started (thanks to Nanowrimo- a fun challenge I do every November)

I’m not sure why I’m writing this, I have severe anxiety over turning 30 and I guess I need to just get it out.

 

 

 

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I spent 6 years searching for a diagnosis

For my 6 year old. As of today, I officially have one. It was given first back when she was a tiny baby in the NICU but I went into denial.

She went through hell for over a year. She was in NICU for 8 months, had 4 surgeries (2 heart caths to close 2 an ASD and PDA, feeding tube placement and laser eye for ROP)

She came home on oxygen, heart monitor and with a feeding tube. She was born with 5 holes in her heart, unable to breathe without help, under 2lbs and 13 inches long.

She didn’t walk until shortly after her third birthday, didn’t talk for years and now only says a few words at once (has a speech impediment but is able to copy what we say, can read, and understands everything we say)

She still can’t jump off the ground, can’t walk unassisted down steps and is finally slightly able to step off the curb. She still can’t write but is starting to be able to give it a great effort and is in therapies multiple times a week both at school and outside of school.

She looks normal, when you hear her talk, she sounds special.

She’s sweet, kind, loving but has tantrums that can rival anyone else. She’s tiny, we have trouble getting her eating enough to gain.

We finally have a diagnosis. We finally know what’s wrong.

We don’t know how severe the outcome will be, but we do have a name. It’s a name I’ve been studying trying frantically to convince myself is not right. It is. Blood tests have proven it. I am, in a way, in a shock but really- I knew it and we were getting all the symptoms treated (it’s not a treatable condition) but I wish it was something she would just outgrow.

 

The name is 1P36 Deletion Syndrome. She has a lesser severe form. She has no seizures, no issues with her brain, her lifespan is normal, she has none of the facial features, but she has it. She’ll likely always be tiny, skinny and we have to have her heart monitored despite all holes closing up but I wish I never had a reason to have heard of this condition. I am still unsure how to feel.

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I never chose my spiritual path, it chose me.

This is going to be slightly different from the posts I have made in the past.

This is about how I found my spiritual path.

From as far back as i can remember, I have had some beliefs set in stone- karma/Dharma and reincarnation being two of the main.

I was raised in the church, in a strict Christian home. No other religions were mentioned and I just held the belief that all people walked the same path. I went to church 3 times a week, played basketball at night after class and followed along. When I outgrew Bible class and started sitting through the sermons, I would read chapters of the Bibles lying around. I tried asking questions about things I had trouble believing with blind faith and was labeled a trouble maker.

I attended 3 different church camps over the summer and almost always ended up befriending the “troubled” more misfit types. Some of my friends were lesbians, some were sexually active, some were atheist and some practiced witchcraft.

I almost got kicked out of the main camp a few times and only went to see my friends I only got to see that one week.

I wasn’t a “bad” kid in the least, I stayed out of trouble and didn’t get into anything like drugs, smoking (until I was 18 and I still regret it) and graduated high school having never even dated anyone. I just questioned everything. I questioned the concept of the Christian God. I questioned what I read in the Bible, how there was only one true religion when all world religions seemed to have deities for the same symbols. I questioned everything but no one would talk to me. I eventually quit.

When I was in middle school, I got into a religious conversation with a classmate who told me he was an atheist. I asked what that was and when he told me he didn’t believe, it made a few prices come together- not every one followed that same path and that may have been why I felt so wrong. I tried to look into it but was stopped since other religions were not allowed to be discussed outside of “it’s wrong” and started reading books in the library at school. In 9th grade, I moved to a very religious area and tried coming out as an atheist. At that time, I was into alternate spirituality and starting to be more into seances and similar. I had previously owned an Ouija board but my mom threw it out because I played with it more than other stuff. I started drawing them and folding paper into triangles to use as a planchette. I used to use it daily, then I’d toss it out and doodle more. I also started trying to contact spirits and studied being a medium. I actually started with an interest in spiritual communications, as I call it, at the age of 7. My friend and I went into an attic and I held my first seance. It was a success and freaked us out. I had to put off studying due to my upbringing but I did try from time to time over the course of my childhood.

While a lot of kids played games like “house? with their friends, I was taking my friends on ghost hunts. While a lot of teenagers were reading magazines, I was secretly in the library reading all the occult, spirituality and haunting books I could get my hands on.

After graduation, when I went to college, I started openly searching. I studied but at that time was out as an agnostic. I looked at Hinduism, but having to believe in deities didn’t sit with me. I still firmly believe all religions are equally valid, but the gods are nothing more than symbols. I do believe in the soul, spirits, demonic type and angelic type beings and the ability to communicate.

Of course, when you’re open about believing in those things but not going to church every Sunday, you get labeled with just about every term people can think of- from crazy to demonic to possessed to satanic (hard to worship a deity you don’t believe in)

In college, I started hanging out with some Pagans and started taking an interest, pair that with the ability to actually study the stuff and I was finally able to start seeking my path.

During college, I met a man I used to go to school with and we reconnected. It was a horrific relationship, but in that time I was gifted my first set of Tarot cards, taught about paranormal investigations, I started practicing different forms of scrying and practicing the craft. In that time, I also took an at home Astrology and Divination course. I was introduced to more of the Pagan community and several websites including Witchvox. I was also introduced to the local craft shop and fell in love with the atmosphere. The community seemed so much more welcoming and it felt like I had found people who thought like me and were accepting.

That was 10 years ago, since then we have broke up (luckily) but I have carried on practicing and trying to learn. I may not practice as much and as often as I’d like but I still read tarot (but a deck that chose me- the original deck I was gifted had nothign but negative energy and gave horrible readings- then one day just randomly disappeared and I didn’t try too hard to find it.

I had had a series of dreams that my first born would be a daughter (it was) and she always was named after the moon goddess. When I met my husband and we got pregnant, our first was a little girl, so like the dreams I named her after the goddess.

She was born on the last night of the full moon, 3 months early. She was born extremely prematurely and was extremely sick. Despite her rough start, she is a strong little six year old now and due to the situation, I have come to call on the moon goddess.

 

I’ll be posting more on spirituality as well in later posts. This is just how I came to discover the path I should be walking down. (I’m still searching, learning and changing but I think we all continously evolve over our lives, especially with how we practice. )

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I introduced the EDS, This is about my life with OCD

As far back as I can remember, I struggled with everything needing to be perfect. My first memory related, was when I was in early elementary school. I had to have my work perfect. By perfect, I mean it had to look absolutely perfect- if I looped a “B,” I had to erase but if I left an eraser mark, it didn’t count and I would have to copy everything onto a new paper until there were no marks and no messy letters. To this day, people complement my handwriting. The ones I’m friends with, I’ll joke about why my handwriting is so neat, other times I’ll just thank them and move on.

Another strong memory I have from when I was in elementary school is being afraid of thinking anything profane on Sunday, after church while I still smelled like the church building. I was afraid if I let any impure thought slip, I would get struck by lightning. Needless to say, I slipped once and nothing happened. When nothing happened, I started to realize it was unfounded so that obsession slowly faded.

I also had a strong fear that if I slept with my feet uncovered, I would get drug into a Hell like dimension by a demon.I read a while back, that is actually a common fear.

When I was in later elementary school, the people I associated with outside of school were middle aged, most of whom had weight problems and were trying to lose weight. What started as me getting hooked on Diet Coke and diet specialty foods, walking and reading weight loss tips in women’s magazines turned into an obsession. Pretty soon, I had a set workout routine I HAD to follow or else, in my mind, I would gain 20lbs over night. It went from a short 5 minute workout to taking over an hour to do. It also grew from having to walk a few times a day to having to walk 12 miles, BUT the 12 miles had to be by myself, if I walked with anyone else, the calories were not burned and my count had to freeze. It also didn’t count without music, so if my walkman died in the middle of a lap, I had to redo the lap. It went from me getting anxious to punishing myself if I failed a day. I would restrict my calories as much as possible until I started having near fainting spells in 9th grade. I found out I had low blood sugar and have been dealing with that ever since. In college, I realized I had a problem by the time my obsession morphed into binging then puking. The disordered relationship I had with food (diagnosed as ED-NOS and later told sounded like OCD instead of an actual eating disorder) only ended when I had my first daughter. I made myself quit and deal with the anxiety because I didn’t want my daughter to grow up seeing her mom starve herself.

When I was little, I was told to not touch the stove- it would be hot. Needless to say, I burnt my hand but another time, I touched it and it was cold. I started testing to see whether it would be hot or cold each time I passed and before long, it was a compulsion. That compulsion/impulse happened every time I walked past an oven from the time I was around 7 or 8 until recently. Even when I was walking through an oven display at a place like Lowes (that’s always fun- tapping every stove I walk past in Lowes)

All those, along with having to bite my nails down until they are perfect, having to delete the whole sentence if I notice a typo and getting a headache when I read the misuse of “they’re, there and their,” were things I always considered quirks. That is, until it got really bad. I started getting obsessive thoughts- intrusive thoughts I could not get out of my mind. My oldest was born 3 months early, 1lb 11.5ozs and 13 inches long. She was very sick, long NICU stay and came home on oxygen. When she was 15 months, I got pregnant with her little sister. This baby didn’t live (she had a condition called Anencephaly) and that was when the OCD symptoms got bad. I got to the point I was afraid of carrying my daughter around because I’d get the image of her oxygen mask (cannula) falling off or dropping her down the stairs.

I started grief counseling through a program we had for my older daughter, mentioned the stories from when I was growing up and she told me I had OCD.

I started studying OCD and it fit perfect- it was like the puzzle pieces fell into place and it gave me such relief. She gave me a piece of advice I still use- to sit back when I have thoughts and ask myself “is this how a normal person would react?”

It has helped me through a lot, but I have had to go to normal people from time to time because, let’s be real, when you have a disorder like OCD- you do not know what normal is.

I have been reading a lot about the condition and I have been doing my best to ignore compulsions, ride out the anxiety and see that nothing horrible is happening. It gets annoying when OCD becomes my focus of obsession and when ignoring compulsions becomes a compulsion itself, but I am getting better with it.

I’ll post more on other types of OCD I have personally dealt with later, but since my diagnosis and starting to learn how to handle it, I have been trying to spread awareness of the real condition- not what everyone likes to joke about.

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Random thought 

When my oldest was little, she was easy to take care of. She was cautious, well behaved in public to the point where we got complemented on her behaviour. I stayed home for 4 years with her and hardly had to clean up messes from her. She also listened to “no” and quit the first time we asked. 

We decided to add a second thinking it would be the same story. The hurricane is now 2 and the complete opposite (not horrible behaved in public but she does enjoy screaming, yelling and talking to everyone. ) 

I’m worn out by noon typically with her. I love them, wouldn’t trade either and wouldn’t change either personality but I never knew 2 sisters could be so different and look so much alike. 

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Random thoughts

It’s been cold for the past week. Along with the cold, my arthritis has flared. I normally ignore the flare ups and go on with my life but my spine was inflamed and I pulled a muscle. Today is in the 50s-60s and it’s my first day back down to a pain level of about 4.

The only thing I changed was going from gluten free to a normal diet. My doctor told me to ignore the celiac panel they ran about 5 months ago when I first got ready to go gluten free because that test could have been wrong and to go back on the gf diet. I’m debating going back now vs waiting until after Christmas. I know eating a normal diet with wheat (the reason I went gf- it’s much easier to find specific gf foods than wheat free) is hurting (literally- bad cramping and other digestive issues) but Christmas cookies and all that.. Not sure why it’s an issue now when back in June when my daughter’s gastro specialist first recommended to me to try it for myself and all the way up to this month, it was easy to follow. I’ve only been studying it for 4 years and almost have shopping mastered. Dairy is easier to stay away from, for me. I don’t like milk, some yogurt and cheese is ok in small amounts and I’m not huge on ice cream.

I do know my IBS is almost fully gone (99%) when I cut both out fully. My doctor told me since gluten is the main trigger, it sounds like I’m gluten intolerant and not IBS. Only thing is stress and lack of sleep are also triggers and with a toddler and a child in school, you tend to end up lacking in sleep a lot.

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I started a new facebook page

I started a new facebook page mainly trying to spread some awareness as I learn about EDS and the other issues I’m learning I have. 

https://m.facebook.com/New-Age-Dream-Girl-704151713114993/

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How I found out about EDS.

From the time I was little, I always remember walking around with what felt like a bad sprained ankle. I was always twisting it, so I had no idea it wasn’t sprained. I also have hips rotated backwards, so my feet and knees stick out to the side. I could never run very well. I’d end up twisting my ankle. Even with all that, I never went to the er nor the doctor often so I didn’t think anything was wrong.

I also have always had a nervous habit of bending my pinky fingers sideways to my pointer and just holding them in that position, it was something to do with my hands (I have also had anxiety since I was very young) and I lived by the belief that everyone could do it. My thumb can lay flat against my wrist/arm and I can turn my feet backwards so they’re straight behind me. No one ever told me that (along with the aches and pains that went with being hyperflexible) was strange.

Fast forward, I just had my first baby. I developed severe pre eclampsia over the course of less than a week and had to have her at 28 weeks. We were in the NICU and while she was there, I welcomed every study they asked me to do. One was testing flexibility. That was when I first heard the phrase “hyper mobile” and scored almost the highest score you can get. It blew my mind because I thought you only were flexible if you could bend your pinky to the back of your hand (I can’t, mine goes sideways) and if you could touch your toes or the floor (my hip dysplasia along with arthritis makes it too painful). I started looking into it and found it was, in fact, odd.

Fast forward five years. Baby 1 is now 5 years old. We took her to a specialist due to very early onset scoliosis. I showed him my joints and he said it looks like Ehlers Danlos. I had my doctor confirm it a few days ago.

In a way, I’m glad I didn’t find out until after I had all 3 kids. I am really not sure if I would have chosen to have kids had I known about this (and others I’ve been diagnosed with that I’m going to go into in another post).

It feels almost selfish, although the specialist said my oldest doesn’t appear to have it- and I’ve had several professionals confirm there really isn’t a great test for hypermobility type EDS- it goes off appearance mostly. I mean, genetics are a crap shoot anyways but it feels like I put two kids on this planet to deal with (mostly mild- at times up to severe) pain for their lives.

The pain gets easy to manage. I wouldn’t know what to do if I woke up one day completely pain free (I’d love it, though). When you’re born a certain way, your body compensates and conditions itself. You adapt to chronic pain so you know nothing about normal. It still isn’t something I’d wish on my kids and I hope neither inherit it, my oldest’s specialist said she doesn’t appear to have it, but I’m watching my toddler’s feet. So far, they do seem to stick out and that seems to be one sign.

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Being a taboo parent- I don’t want sympathy. I just want to be able to talk about all my kids.

Being a special needs parent shouldn’t be as isolating nor as awkward as it is. If you have been through a long term nicu stay, it should not be met with awkward sympathy nor should it automatically shut other parents up. I mean, yes, back when I was living at nationwide children’s hospital alone with only my infant, it did get depressing to see how many people came and went. It was a bitter sweet thing to see so many people make the going home announcement while I was wondering when would it be our turn but she’s out now. She’s out, she is healthy and most importantly she’s a survivor. We don’t want sympathy for what she went through. We’d rather have excitement that she made it.

Of course, when you’re the parent of a special needs child meeting other parents who are comfortable around your child is also a challenge. My daughter is and isn’t special she is now 6 and in 1st grade, she’s able to read starting to write and her speaking is finally starting to make more sense. It still gives me anxiety when she’s around other kids. We’re trying to teach boundaries but she’ll still go up and point out an animal or character she really likes on a kid’s shirt. I’ve seen nervous looks on kids’ faces. I do know the ones who are around her on a regular basis like her. When she was in preschool her classmates got excited to see her and I’m still recognized as her mommy. I guess it’s projection from when I was made fun of as a child for walking and talking so different. There are obstacles dealing with lifestyles as well. We see several specialists throughout the year and a few therapies for 1 hour 2 times a week, add that to school work and toting around a fully healthy toddler and meeting people is even harder. I haven’t found baby and me classes near me nor have I found mom meetups like I have read about. Maybe my town is too small, maybe we’re all too busy or maybe I’m just not in the right network to find them. On top of having a premie with a nearly 1 year nicu stay, we also lost our 2nd baby to a deadly birth defect called Anencephaly.

If you think a long term NICU stay is stressful, try being told that this baby, the next baby, the one that you really want to add to your growing family, the baby that you were really excited about is not going to survive. Not only that, but the baby has a severe birth defect that affects the way the baby looks. You read online and you look up the condition and everything that you see is just people disrespecting the babies calling them such horrible names and everything. It just ends up being too much and you are even afraid of mentioning what the defect is called. Amazingly; on the same day, in the same room, in the same hospital, another woman ended up getting diagnosed with the exact same condition. I went home that day, looked it up on Facebook and found a large support group for the defect. We were discussing where we were from and she and I just happened to meet. We spoke on Facebook and teamed up for the March of Dimes. We both do the march every year in both of our babies’ honors. I bet it’s going to be a lasting friendship because of the way that we met.

I’m at a point now with trying to meet people that when I talk about my 2 living kids I feel guilty if I don’t mention one whom I lost, but when I mention her, it brings awkward silence. I have been reading more blogs and more posts and seeing more pages in social media that are trying to break the silence of baby loss and make it less of a taboo subject, but until that day I guess just mentioning that you lost a child will bring the conversation to a close.

It’s not that those of us who have lost babies are wanting sympathy we’re just wanting to find a way to keep the memory and to mention “Hey she was alive, she was here but now she’s not.” It really shouldn’t be so difficult for people to bring up in discussion and it shouldn’t be difficult for those of us who are raising babies who had an extremely rough start; or those of us who have gone through the nightmare of losing a baby to meet other parents and actually have conversations without the conversations turning morbidly serious. Yes, my daughter almost died multiple times. She and I both did. She did have an extended NICU stay and she did have to have multiple surgeries but she’s here now, she’s alive, she’s healthy, she is very happy so why should we be expecting sympathy? And I mean yes, my middle daughter would be 4 years old, she would be going into preschool now, she is not here but she did exist- she was born, she lived and she died. It has taken us a while to accept it. It happened and we had to accept it. We can’t just live in the past and still be depressed with 2 living children who depend on us and depend on us to teach them how to handle the cycle of life and death.
Why does it make people so uncomfortable to discuss? Why does it kill conversations when you’re just trying to mention your other child’s existence or are joining a conversation about pregnancy? I try to keep from mentioning my first 2 pregnancies when I’m speaking with a woman who is pregnant with her first and nervous but talking to friends, I don’t understand why it’s either “I’m sorry” or another way of showing sympathy when the first little girl is healthy and happy now. Skinny, but healthy.

I hope the efforts people are making work and one day talking about less than perfect pregnancy experiences aren’t the taboo subject they are. There are women and men suffering in silence and talking openly helps people newly walking that path see they’re not alone.

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Sometimes dreaming is too personal and too close to home in it’s message for even the most talented interpreter to interpret. 

That is normally where those of us who offer our services come in. I have yet to be told a dream I couldn’t interpret, until now. I had a strange dream last night and even though I can interpret the symbols, the dream seems to be giving me a deeper meaning and I’m unsure if I should attempt to interpret or if my subconscious would bend it to what I would want to hear. I would normally ask, but in my circle, I am the dream chick. 
I wrote that a few days ago when I had the dream. Since then I have managed to figure the meaning out. The point still remains, though. 

It’s about the same as it is for reading tarot or other divination methods. I’ll read for myself for practice but I still will go for a second opinion. Tarot, dreams, all the other methods of divination can all be great tools but they can easily be lost when you’re trying to do it for yourself.