Positive Things

Jason has had his new job for over a month now.  It is nice not having to panic at the thought of where we are going to get money for things we need.

I still don’t have insurance, but we are working on that.  But that is a post for another day.  And I am still waiting to hear something about the status of my disability case… but that too is a post for another day.

But I want to think of Positive things today.  Kind of a wishlists, so to speak.  With a steady income, there are a lot of things that we can now afford to get.  Things that we need, things that we have held off on getting… and some things that I just REALLY want. :)

One thing we really need is a new mattress. The one we got shortly after we got married was inexpensive… and, well, we are paying for it now.  I already have insomnia problems, and chronic pain, and a new mattress that is supportive could make a world of difference.  I really like the Sleep Number beds, but they are a bit pricey.  We will need to save up a bit, and figure out exactly what we want.  But I know we need something better to help me (and so I don’t wake up with random dislocated body parts) feel better and actually sleep.

Jason wants to get a new car.  I am not so sure that that is the best idea at the moment.

One of the things that I really want, and it is a want, not a need, is a pair of these AMAZING boots!  They are Dark Turquoise, knee high leather boots, made by Gipsy Dharma.  You can see them here http://www.gipsydharma.com/collections/all/products/dark-turquoise-knee-high-leather-boots  They look so comfortable, and I love the color!  With all my health issues, I have had to totally change what shoes I wear.  No more heals.  Everything has to be supportive, everything has to be “good” for my feet.  And these look like they would be perfect, yet still look amazing!  And, if I was wearing my compression sleeves under them – you wouldn’t be able to see them!

The lady who makes them runs a contest on Facebook every few weeks, giving away a pair.  I keep entering, hoping to win.  I really love all of the boots, and really want a pair, but they are very expensive.  Winning a pair would be awesome, and get me a pair a lot faster.  Other wise, it will probably be a while before I can save enough to actually order a pair.

I also would really really love to get my full back parrot wings tattoo.  It would also be very very expensive, so I would have to save up for it.  But I still want to get it.  Parrot wings, in shades of blue, purple, and green.
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The most complicated post I wish I wasn’t making

It is November now.  And I think I have emotionally healed enough that I can write this all down.  By no means am I fully healed.  But writing has always been cathartic for me, so this might help the rest of the healing.  As for physical healing… I’m not, and part of me is scared that I won’t ever be.

I had been having trouble with my IUD, and it had slipped and was sitting on my cervix.  This was very very painful, and my OB/GYN removed it back in July.  We wanted to let things “calm down” before trying a new IUD, or trying to find a new BC option.  With my epilepsy meds, I can’t use any kind of hormonal based BC.  The meds cancel each other out.  So, when I went back to my doctor in late August, to discuss BC options, we were pretty much set on another IUD.  But instead, we found out I was pregnant.

With Jason not working, and unable to get anyone to hire him… this news caused a lot of stress.  There really wasn’t much joy or excitement.  Just lots of discussions on money – or the lack there of – and work, and how would we be able to do this, etc.  I was super sick and nauseated, and hardly able to eat.

I never got the chance to have the happy, excited, joyous part.  When I went for my first ultrasound and appointment, things didn’t go well.  I was 9 weeks exactly, but there was no heartbeat.  Everything was just as it was supposed to be, except no fucking heartbeat.  I could even see the little spine on the screen.  The doctor said that it was a recent occurrence – like in the last 24 hours, most likely.  Rather than wait for the inevitable, I opted for the surgical procedure 2 days later.  At that time, my doctor would give me my new IUD too.

Everything went fine during the procedure, except for the nurse who decided I needed lidocain in my hand before placing an IV.  She used the lidocain with preservatives (the stuff I’m allergic to), so I had a big swollen itchy spot that hurt like hell.

Afterwards, I had some minor bleeding, as one would expect.  But spotting and such continued every single day.  Then, 27 days later, I had massive flowing bleeding that landed me in the hospital.  The details are horrific – my bathroom could have posed for a crime scene on CSI, 3 pairs of pants & 4 pairs of underwear needed to be soaked and washed with oxyclean, 1 pair of underwear did NOT survive the ordeal, and I lost several pints of blood in one evening.  My OB/GYN was the on-call doctor, so she took care of me.  She removed my IUD, and by some miracle got the bleeding to stop.  We still don’t know exactly what caused it in the first place.

A few days after I was in the hospital, bleeding had stopped.  I was so relieved.  Then, last Saturday, we went to a small party at a friend’s house.  I was up and around, walking and standing.  Nothing strenuous.  When we got home, I discovered I had started bleeding again.  Not the massive flow kind, but more your standard period kind.  As days passed, it slowed and tapered off.  Now, Yesterday, 2 weeks after hospitalization, we had to run errands.  Bleeding has started yet again.

I feel like this is some horrible nightmare that I can’t escape from.  Isn’t it bad enough that I suddenly lost the pregnancy??  Why do I need to keep suffering through all the rest of this too?  And because this is such a taboo topic for so many people, and we didn’t really tell anyone that I was pregnant, there isn’t anyone to talk to.  I can’t vent about it.  I can’t tell people to shut the fuck up about their stupid little problems.  I can’t explain why I am angry or sad.  I can’t explain why I’m distant or why I don’t give a shit.  And to be completely honest, I want some fucking sympathy.

I have also had a migraine for 3 weeks now.  Plus, as soon as the procedure was over, all my POTS symptoms have come back with a vengeance.  They have been so bad that I ended up in urgent care twice in October.  My BP has been so low – 90/57, 88/63, 91/62… numbers like that.  Right now, life is so crappy.  I want to yell and scream and throw a tantrum.  It isn’t fair.

When will it get better?

I was really, truly hoping that 2013 would be better than last year.  So far, it is NOT living up to my expectations.

I got denied for Disability.  Not a huge surprise; but I was hoping that just maybe it would be easy.  Got my lawyer, and now things are in his hands.  I trust him, and he is great.  So we are back to just waiting, and waiting, and waiting…

Finger is still fucked.  Still doing PT.  Still have zero use of the two upper joints.  And the upper joint to the tip of my finger is completely numb and useless.  I can’t pick anything up, or do anything with it.  Not even type.  I have been doing PT 3x a week since December, and that part of my finger is showing no improvement.  Another appointment with the Orthopedist on March 13th, where I am sure he will just continue PT… but I am disappointed with how things are going.

Epilepsy has gotten worse.  The sun has become my worst trigger.  I look like a female “goth” version of the Unibomber when I go outside.  Super dark glasses, something covering my head, and part of my face… and I often wear it indoors too.  In places with bright lights.  I was wearing my own creative solution for dark glasses… 2 pairs fixed together.  They didn’t look good, and I got lots of odd looks, and they weren’t super comfortable, but at least I could leave the house without seizures, migraines, and vomiting.  But then my friend Evan pointed me in the direction of a website that sells safety glasses, welding glasses/goggles, and sunglasses.  I was thrilled to find several pairs of glasses that work perfectly!  And they were cheap!  One pair was about $6, the other around $9.  and shipping was cheap too.  So Evan is my hero!  And SafetyGlassesUSA.com is my second hero, and everyone should check them out!

I now have a Cardiologist.  My heart rate is too fast, and irregular.  However, my blood pressure is on the very low end of normal.  I had to wear a Holter monitor for 24 hours to record my heart rate, and my average heart rate was 94.  The lowest was mid 80′s, and the highs were over 100.  I have to go in for an echo, just to make sure there isn’t anything wrong.  They can’t give me any medications for my heart rate, as they would also lower my blood pressure, which would cause me to pass out… a lot.

I’m also having a lot of issues with people who I though were friends.  People seem to always assume the worst of me.  I was trying to be helpful, as I was concerned for others, yet it was interpreted as a malicious act.  My bank card numbers were stolen.  Got it fixed quickly, no problem.  But then, in talking to friends online, I learned that 3 of my “bird friends” also had their card numbers stolen in the same week.  Now that seems more than coincidental.  especially since I rarely use my card – in fact, I have only used my card at 3 places online, ever.  And never at a restaurant, or retail stores.  I know that 2 of those 3 friends shop at a certain online bird store, one that I also use, and that is one of the places I have used my card.  I consider the store owner a friend.  I was concerned.  Not just for the store owner, but for my other bird friends  that shop online.  I know that not everyone checks their online banking statements the way I do.

Instead of people being appreciative for the heads up, I was attacked and vilified.  For “making accusations”  and trying to ruin her business.  For spreading rumors.  For being malicious.  For not contacting her personally.  But the thing is, I did contact her personally!!  I sent her a message right away.  The biggest issue is that these people don’t understand how hacking works, and they won’t listen to me because they have all decided that I am the bad guy.  Not a single person came to my defense.  NO ONE.  But there were a whole truckload that came to attack me.  I guess I should just accept the fact that people don’t like me, and stop trying to be friends with them.

It’s like how I am trying to get help with planning something for Jason’s 40th birthday, and Shannan-Jo’s birthday.  I get no responses, no help.  Who are my friends?  who can I trust?  It’s times like this, where the stress of all my health issues, plus the obvious fact that I don’t REALLY have any friends, that just makes me want to give up on life.

2012 – A year of suck, in review.

For me 2012 was a year of stress and turmoil.  My mother’s mentally and verbally abusive boyfriend (of 20 years) up and left her because she was sick.  It turns out she was diagnosed with epilepsy.  But to make himself not look like the bad guy, he had been telling her entire family all sorts of horrible lies about her, about my husband and I ( we live with her to help care for my disabled 25 year old sister).  My family has been ripped to shreds.  And my mom still hasn’t been able to get her epilepsy meds adjusted right, so she is still having some problems.

I got diagnosed with Fibromyalgia at the beginning of the year.  Then, after my mom got her epilepsy diagnosis, it was discussed that it could be a hereditary thing.  In discussing the symptoms, it turns out I have been having mini seizures my entire life, with at least 3 episodes of lapses in consciousness.  I too have been diagnosed with epilepsy, with the strong suggestion that I shouldn’t drive unless it is an emergency.  My meds are managed fairly well, but I have to be careful, because we don’t want to interfere with my meds for my OCD, Bipolar, or Severe Chronic Anxiety.  The DMV agreed that I could keep my license.

I had to have surgery on my foot in June. I had had surgery on my left foot in 2005 to remove a Morton’s Neuroma, it’s kind of like a tumor of scar tissue and nerves between the bones close to your toes.  Well, I was having a lot of pain in the same spot, so they had to go in again.  Sparing the gritty details, stuff had to be removed, and things needed to be done to really clean up that part of my foot.  Bigger incision than before.  Longer healing time.  Really interesting walking “cast” – an Air Cast – kind of looked like a Storm Trooper boot.  I was wheelchair bound for a while.

In April, one of my birds, my cockatiel Claire, suddenly passed away.  She was on eggs at the time, and her mate Charlie was devastated.  It was so awful.  He kept calling for her.  As long as we had had him, he hadn’t been alone.  So despite our own grief, we went and found him a new girl. He bonded to her instantly, which was wonderful for both of them.  But then in August, Charlie got really sick.  We had to drive 45 minutes, at 11:30 pm on a Friday night to take him to an emergency avian vet.  He almost died on us.  He had liver issues, as well as Psittacosis.  Psittacosis is highly contagious, and can even be passed on to humans.  They weren’t sure he would survive, and we also needed to treat our entire flock with antibiotics, as well as disinfect our entire house.  So, 8 weeks, and about $4,500 later, all our birds are healthy, and the house is really clean.

However, while giving our birds their antibiotic injections, my sweetheart, Karma, bit my finger.  The bite itself wasn’t that bad.  But because of my fibromyalgia and epilepsy, I also have a condition called Central Pain Syndrome.  My hands are permanently numb and tingly, and so my body over reacted to the bite.  The bite happened October 4th, and by mid December, I still could not move my index finger at all.  I am now doing intense physical therapy three times a week, as well as taking medication that is supposed to help the CPS,  and I can move my finger a little bit.  It is still very swollen, and looks bruised.

I applied for disability back in October, but I have yet to hear anything.  I’m unable to work, and have $12 in the bank right now.  I have meds to pick up, and 2 doctors appointments coming up, and no money to pay the copays.

I’m just waiting for 2013 to get better!

My body hates me

In my brief opening, I mentioned some of my mental issues.  But that is merely the beginning.  As of right now, my diagnoses are:

  • Bipolar
  • OCD
  • Severe Anxiety
  • Agoraphobia
  • Migraines
  • Epilepsy
  • Fibromyalgia
  • Asthma
  • Severe Allergies
  • numbness & tingling in both hands
  • Gaastroparesis
  • chronic back pain
  • morton’s neuroma/stress fracture/scar tissue/other issues with left foot

That is kind of a lot.  Still haven’t found a Fibro med that helps.  And last time I was at the neurologist, they did a bunch of blood work.  It shows that I have a severe vitamin D deficiency.  Problem is, I take about 300% of the suggested daily dosage of vitamin D daily.  And I can’t go hang out in the sun, because not only do I burn, but the light triggers seizures, but it also causes rash and heatstroke after 15 minutes or so.  Don’t know what I’m supposed to do about that.  I do have another appointment with my Neurologist on the 21st, so I guess I will find out then.

Oh, I also got paperwork in the mail from the DMV…. they want to revoke my drivers licence.  That whole epilepsy diagnosis.  Not that it matters much since I really don’t drive, it’s just a big hassle of time, $$, and paperwork.

Got all my disability stuff filled out online, and submitted.  I’m hoping that with the addition of the epilepsy they won’t deny it, they will just accept it the first time around.  I won’t hold my breath, but I will keep my fingers crossed.

The Birds

So I haven’t posted anything after my original post. It isn’t because I have forgotten or got lazy. No, it is because all of my birds have decided to get sick and try to die all at once.
Yes, I am a crazy bird lady. My birds make me happy… well most of the time. They are much like children, just forever in the toddler stage. I have 10, and no, that isn’t a typo. A Severe Macaw named Chewie, 2 Solomon Island Eclectus named Karma & Romeo, a Senegal named Poe, 2 Green Cheek Conures named Dee Dee (male) and Desmond (female), 3 Cockatiels named Charlie, Eva, & Sid (female), and a Parrotlet named Petey.
It all started about 3 weeks ago, when we noticed that Charlie was puffed up on the bottom of the cage, breathing heavily. Of Course, it was 10 pm on a Friday night. This lead to an emergency vet trip, emergency avian vet, follow-up with our regular avian vet…… $2500 later, Charlie had been given antibiotics for a respiratory infection, he has liver issues, and tested positive for Psittacosis. Then, the very evening we get Charlie’s Psittacosis results, Sid, our special needs tiel, begins to show signs of illness. She saw the vet Thursday morning. Yup, she is sick too, with signs of infection and renal and liver issues. Eva, is the asymptomatic carrier of Psittacosis and brought it into our home. It is highly contagious among birds, and can be transferred to people. So, we are already $3000 into this, and still have to treat everyone. Charlie, Eva, and Sid have all had their first of 6 injections, but the other 7 birds have not had any injections.
EVERYTHING must be disinfected. The carpet, the walls, the ceiling, the cages, the curtains, Everything. This is a huge undertaking. I am super stressed about it, as I am really not much help, as my health sucks ass right now (but that is a whole other post in itself). I’m hoping that Sid can survive this, as she is weak to begin with. I also hope that I don’t have a complete nervous breakdown over all of this.

The point

The point.  Quite simply, the point is, I am crazy.  Clinically so.   Bipolar, OCD, Severe Anxiety, Agoraphobia…. that, and I have more health issues than the PDR.  I feel like I take enough medications to qualify as having enough medication in my home to be my own pharmacy.  So, in order to deal, or try to deal with all my own specialness, I will write things down.  I will go into things, in far more detail later, but for now, this should sum things up.