Angry Mom

Photo Credit:  sheknows.com

Angry mom helps to describe me in so many ways right now.  The first way I am angry is at UCLA.  I still had not heard anything from them so I thought I would try calling again.  After waiting on hold for 20 minutes I finally got through to speak to a human.  I asked to make an appointment and I was told to hold again while I am transferred.  Someone picked up soon after and said they could set the appointment for the muscle biopsy.  Finally I thought!  I was going to make the appointment.  The woman said the doctor only does the muscle biopsies on Mondays and Wednesdays.  She asked which day I wanted and I said I was not sure.  I asked when is the first available appointment.  The first available appointment was October 26th!  Not only is this after I have to leave Nevada but it is right after or close to when I am suppose to start my new job.  Aaaaggggg!  So now I am not sure what to do.  I need to get the muscle biopsy done for Joseph.  I have been working on this really since LAST year and this year I have been trying to get an appointment since the beginning of August I think. Now that I am going to Phoenix and I asked the geneticist, who is wanting the muscle biopsy, if she knew of anyone who can do the procedure there.

The next thing that got me angry today is the Nevada DMV website.  I got a call from my new job in Phoenix.  I have been asking them for a job offer letter for the last three weeks.  I was told they could get a letter together for me but not until they can get my driving record.  I did not get this call until 3:30pm.  I looked online and you can order your driver's record from there.  I thought, great, and I got everything together to place the order.  When I put ALL the information into the computer I hit the process order button and I got sorry but our systems are down.  Aaaaaggggg!!!  I was told I cannot get my job offer letter until I get my driving record to them so something else to hang me up.

Finally I have noticed I have a lot less patience with the children right now.   I have turned into an angry mommy with the children.  I don't want to be like that to them.  I really don't want to be like that when I have so little time left to be with them before I have to be gone all the time too.  James cried to me several times today because John did not come by tonight or yesterday.  I am worried about him feeling abandoned when John will be gone and then I will be gone too.  James is all ready asking me to come to my room and lay down my bed next to me.  He snuggles close and I let him play the Kindle.  It makes him happy and I enjoy the time with him but this is something he has never done before.

I know my anger is related to me being stressed, depressed and anxious. Why shouldn't I be?  I have about 10 days to be out of my home.  I am not fully packed.  I have no help in getting packed.  I have no place to put my stuff even if it was packed.  I am not sure what I will be able to take with me.  I have no idea where we are going and I am worried we will be homeless.  I don't know who will be watching my children, how I am going to be able to pay for it and how/when I am going to be able to start my new job.   There are just so many things in the air. I may need to see a doctor for something to help me control the stress and anger.  This is a lot to be going through!

Where did the Motivation Go?

I was so tired when i got up at 7:00am this morning.  Since I went to bed about 1:30am that gave me about 5.5 hours of sleep.  For me this is normally enough but not lately.  I am not sure why. I ended up being able to take a nap of sorts (I was lying down and the kids played around me) from 1pm to 3pm. I got up but I am still tired.  Part of my problem I think is the interrupted sleep.  The second problem is the lack of motivation I am feeling since I have no plan. I basically have 10 more days to pack and clean out this house and ....then what?  

When I laid down for a nap I had James crawl into bed with me, then Margaret and finally Joseph.  I had the three children in the bed with me and they were all playing with different things quietly.  I thought about how much I would miss doing things like this with them.  It is not that it can't ever happen but it will be rare.  I will be gone to work and someone else will have to fill in for me.  They will get to referee fights, fix meals and kiss boo-boos while I am gone.  It makes me sad.  I feel like my children still need me, especially Joseph, but I have to leave them with a stranger while I try to make money to support us.  I have enjoyed my day with the children even though I should have been packing.

I called UCLA, still nothing!  I cannot believe I can't make an appointment to get this muscle biopsy done.  I am furious!  At this rate I will not be able to get it done before I leave town. Sigh!  I SO wanted to get this done. Then I had a call from the endocrinologist and I just cancelled the appointment.  He is only giving thyroid medicine to Joseph and to be honest he is not my favorite doctor so I am not too disappointed.  Tonight I will be looking for doctors in the Phoenix area and calling to make appointments.

Life trudges on.  I have no idea what is coming but the future will one day become my present and I guess I will not have to wonder what it will hold for me any longer because I will be living it!

Hiding!

John came over for his two hours of visiting the children tonight and I left the house.  I took off in my car and headed over to a local wi-fi hotspot and I am sitting in my car with the windows rolled down playing on my computer.  It is SO humid outside tonight!   LOL

I am just enjoying the quiet time here. I can get some work done on the blog.  I was busy today trying to make some phone calls and get some packing done.  The kids are SO curious!  I was out in the sun room area of our house trying to go through the boxes out there.  It is a lot of their baby stuff and the kids were having a great time!  I was able to pull some things out where I had hand prints or pictures of them when they were just little babies.  They were loving it...lol.  Called UCLA and I was told the doctor STILL had not finished reviewing Joseph's medical records so NO appointment!  Called the UMOM homeless shelter again but still no reply.  Called the   pulmonologists and got an appointment for Joseph but not until the end of the month.  It will cost me $70 to see him so I am waiting.  I need to start looking for specialists in the Phoenix area for the children and making appointments.  For many specialists there is at LEAST a two month wait to get in so I want to make sure I am on the ball.

Before I left the house I had been listening to the children screaming for the last 90 minutes.  I did not stop it because it was happy screaming...lol.  They were having fun.  Joseph was on a small ride-on toy, Margaret was in a large dump truck and James was on his scooter board.  They were all pushing themselves around the "track" in my house and chasing one another.  One would scream and another would scream in reply.  It was hard on the ears but I am glad they were having fun.

Earlier today one of the things James mentioned to me was Shawn. James said Shawn is Daddy's friend.  So I asked if Shawn was a girl or boy and James said she was a girl.  So I asked if Shawn was little like James or big like Mommy and James said, "Big like you silly!"   So I texted John...

Me: Who is Shawn? Boy, girl, work friend, church friend or what?
John: Why are you concerned?
Me: Because he knows a lot about them and you have not mentioned them.  Just as I am sure you would be curious if the situation was reversed.
John: Not particularly.
Me: If she is someone you are seeing then you should just say so.
John: It is not.  It is A friend from church.

Notice he does not say if Shawn is a boy or girl.  He does not tell me much.  It seems to me if he was interested in getting back together with me he would be forthright.  Also am I SO out of line for wanting to know the people who are around my children when I am not there?

Tonight I have to go to bed early.  I have to roll out of bed at 5am and get the kids out of the house by 5:30am.  I have an appointment for Joseph to have his blood drawn at 6am.  This way he will not be starving for too long since this is a fasting thing.  It will be a LONG day tomorrow!  Hopefully the children will want to nap.  One can dream....

It's all Bon Bons from here...

The bon bon thing is a running joke between another mommy of a disabled child and myself.  We joke all the time about how we are unappreciated for all the work we do and the guys in our lives (my husband (soon-to-be ex I guess) and her baby daddy) think we are just sitting around the house eating bon bons all day.

So far this morning I have gotten up and fixed the children breakfast, fed them, put up the dishes and put those dishes into the dishwasher. Then came back to the office and checked my email.  Talked to my mother to catch up on what is going on with my immediate family while I was cooking,  I got a call but I ignored it.  When I checked the call in the computer room (had to wait until then b/c the kids were fed and watching TV so I can make calls in peace).  It was Roni from the insurance company telling me that Dr. Sheih DOES work on pediatric patients.  All I can say is that is NOT what the receptionist told me.  She said she did not understand why no appointment had been made and did not know why I was having such a problem.  Well, to be honest Roni, I have NO idea either!  I will have to call UCLA later today and see what I can find out.  I then called Liberty National trying to find out why I am paying $17 and $18.25 for a couple of policies.  I had to wait on hold for about 15 minutes.  Then I got to talk to someone.  She had to look up the information and so did I for that matter to help her find the policy.  I found out that the $17 policy is a life insurance policy for Joseph.  With all of his medical issues it is practically impossible to get any type of coverage on him.  So, for now, I will keep it.  The other policy is a Family Hospital and Accident policy.  Again, for now, I will keep it.  It is actually a good policy and will pay out if we are in an accident or need to be hospitalized.

Next I called my soon-to-be boss.  I am still trying to get the job offer letter.  When I called I got his voice mail again so I left another message.  I have called a WIC office in Arizona trying to see how I transfer service.  So far I have called twice this morning.  I left a message once and the other time I hung up.  Yesterday Margaret was crying and telling me her teeth hurt.  Then she said her cavity hurt.  I am sure this is from Yo Gabba Gabba (the verbage she is using) but I know the pain is real.  She went to bed last night without complaint so I was hoping that was the end of the issue.  This morning when I was trying to feed her she was in pain again.  She even asked to go to the Target medicine cabinet...lol.  Target is where we get our prescriptions filled so I am sure that is where that come from.  I gave her some pain medicine.  I called the dentist and I got her an appointment to be seen today.  We have to leave the house in 30 minutes to get there on time.

So far I have even taken time to write this post.  I will have to come back later.  Just think I did all of this and MORE, much more, since 8:00am this morning.  Don't have the time to write all about it...lol!

Yard Sale!

So tomorrow I will drag out as much as I can out of my house and try to sell everything I can part with.  I cannot afford to move it to Arizona and I am not even certain I will be able to afford to move it to a storage room here.  Since I am still having problems with my right hand from the carpal tunnel surgery it is difficult to do a lot of lifting or much of anything else that involves a lot of use of my hand.  The scar from the surgery still looks bad, is red and inflamed and there is a lot of scar tissue under the scar making the incision painful.  I will do the best I can though tomorrow.  I have a TON of kids clothes I can sell plus a lot of household miscellaneous furniture.  I am hoping to raise at least $100.  That would be great! 

On the positive front I did get a call from UCLA and get a UCLA patient number for Joseph.  I was told the doctor will review Joseph's medical records and decide if he is going to take his case or not.  The doctor's office has until September 7th to get back with me and set an appointment.  Otherwise they will be hearing from me EVERYDAY until they get back with me.  I need to get this muscle biopsy done BEFORE we move. 

I still have no idea HOW I am going to make the move and hold over in Arizona until I can start my job AND get a paycheck.  I am trying hard not to panic over it.  I spoke to my father about my financial concerns today and mentioned that I was facing a $400 electrical bill and I had NO idea how to pay it.  I also need to move and I was not sure where that money was going to come from and I have little to no food in the house and not a lot of gas in the car.  Then I told him I was told by the doctor who did my hand surgery that he wanted me to go to physical therapy twice a week to help increase the strength in my hand, help with the scar pain, stretching the skin, and try to break up the scar tissue BUT I could not afford it since it would cost me a $20 co-pay each time I went and there is NO way I can justify spending $120 a month on the therapy when I need to spend a $20 co-pay to see my family doctor so I can get a refill of an important maintenance medication for me (which will cost $10 to get filled).  At the end of the conversation my sister called so I was told he had to talk to her but he said, "Yep. you have a lot of logistics to figure out for your move."  So I take this as he is not going to help financially. Not to mention my birthday is on the 4th and there was no mention of giving me money for my birthday (hoping that will still happen).  In the meantime I NEED this yard sale to have money to live.  I have $40 to my name right now that I can spend.  Other than that there is NO more money until September 10th.  I have half a roll of toilet paper in my house, not a lot of food and not much in the way of prospects.  I was luck enough to sell Joseph's crib today so I was able to order pizza when James asked for it today.  He never asks for things like that so it was nice when I could say OK and place an order with Papa Johns. 

On the other hand I have felt horrible when Margaret has been asking me for Hello Kitty stuff.  I know she, somehow, got a Hello Kitty doll.  She LOVES it!  So I thought I would look for some bedding stuff for her because I would like to upgrade her to a twin bed.  She saw me internet "window" shopping and asked when I was going to get her Kitty.  You have NO idea how this tore me up because, being autistic, she does not directly ask for things very often and when she does I try really hard to get it for her. 

The other day I was in Target and I saw a Hello Kitty twin comforter for $35.  It was adorable!  I wanted it SO bad for her but I knew I did not have the money.  I COMPLETELY understand why some people steal when it comes to giving things to their children.  To have your child look at you wanting something so desperately and knowing you cannot get it for them.  Yet the item in question is close at hand in the local store.  It is just a matter of taking it.  I understand the desire, I really do, but it is poor impulse control to steal and take it.  I left the store misty eyed knowing the comforter she wanted was so close but SO far out of my reach.  I am hoping I will be able to get it for her birthday in December.   Some days are SO hard at the moment.  I just have to remember that I can, no I HAVE, to make it until the end of November.  By Thanksgiving I truly will have something to be grateful for since I will have a job and be earning money. 

Medial Frustration and Life in Transition

For the past 6 months I have fought with my insurance company to get a medical authorization to get Joseph a fresh muscle biopsy done to test for mitochondrial disease.  Once I FINALLY got the medical insurance to approve the biopsy I have spent the last month trying to get the doctor's office to call me to set up an appointment.  In the last month I have called them AT LEAST 10 times and I have gotten only 3 calls back.  Today was the FIRST time someone called me AND I was able to get the phone.  Keep in mind I have left two messages a day for the last three days.  I even called the insurance case manager to complain that my calls were not being returned.

When I got to speak from someone in the neurology department at UCLA I was told they did not have my son's records.  YOU'VE GOT TO BE FREAKING KIDDING ME!!!  So the guys goes on the explain I need to talk to the registration department.  I said, "why was that not in the message so I could check up on things instead of losing time?"  His response, "I don't know but I could put in a request to get the message changed to add that information."  UGH!!!  SHOOT ME!!!

So if you do not have a patient ID with the UCLA then do yourself a favor and contact the registration department (phone - 800-825-2631, fax - 310-301-5391) since they are in charge of everything anyways.  So I had to called Joseph's referring doctor again, the geneticist, and asking her office to fax over the information again.  A week ago she had faxed it over while I was on the phone and now here I was asking her to fax over the information again.  I explained how I had been trying to make this appointment for the last month and I was getting frustrated over the bureaucracy of the UCLA system.  The nurse at the geneticist's office was kind and she said she would fax it over and then call to make sure UCLA registration had what they needed.  I told her that was VERY nice and THANK YOU!

I was able to make a few calls to Arizona today.  I was able to talk to an advocacy group for disabled children.  I was able to get some good information and I am sure I will get some more.  I found out about a great homeless shelter program called UMOM.  I may have to take advantage of one of their programs until I can get my first paycheck from my new job.  Otherwise I will only have $1700 to $2100 to support all of us for the month.  Plus, once I start my job I will not get any pay right away.  The first paycheck will be at least two weeks after I start and I have to find someone to watch the children for me and I will have to pay them in advance (at least partially).  Just need to determine how I am going to pay to for everything.  By taking advantage of one of UMOM's programs for a bit it will help me to get us on our feet.

On a possible positive note I remembered that Good Night Pediatrics is located out of Phoenix.  Yea!!!  I cannot recommend the office in Henderson, NV enough.  They are GREAT and MUCH faster than an emergency room.  With the office hours from 5pm to 5am I can take care of emergencies during the night with ease.  That is a HUGE relief to me since Joseph has a TERRIBLE tendency to have some sort of respiratory emergency on the weekend or during the night.

I have a lot of friends on Facebook and they are some super great people with super great information that I like to share on my blog.  One post was taking about Gluten Sensitivity and Magnesium Deficiency by Dr. Osborne.  It is a great article explaining how this can occur.   Someone also found an idea off of Pinterest that is a great idea to get yogurt into children.  You can make your own yogurt dots.