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!

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. 

Trip to St. George and the Geneticist

Its fun having the kids in the car. This is the First time they are pointing out geographic features.


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Again, I was trying to use the mobile blogging feature. I have to work on this and see if I can get it worked out.

We had an appointment for Margaret and Joseph at the geneticist at 1:00pm Utah time. Dr. Arch is in St. George, Utah. There is only ONE geneticist in the state of Nevada and to get to see her there is at least a three year waiting list. So we went to Utah. The drive should take about two hours and twenty minutes but the drive was more like three hours. There was a small traffic accident on the way out of Las Vegas and I had to go through two construction zones before I arrived at the hospital (this is where the geneticist has her office). Luckily for us there were other patients from Las Vegas that day and they were late also so when I called and said I was running late it was not a surprise to the staff.

On the way there the children really where pretty good. I had the foresight to through in some books and toys into the car before we left. The kids played and shared SO nicely back there. I was SO proud of them. They were also having fun pointing out geographic features like cacti, mountains, rivers and trees. Especially when we went through the Virgin River Valley Gorge. James got out of the car and lead the way into the hospital. The kids played in the waiting room and got into the bag of food I brought with me as I went over paper work. Then we were escorted into the back and into a waiting room.

The kids now wanted to play with the toys in the room. It was about 10 minutes later the Dr. Arch walked in. We quickly discussed Margaret. With Margaret having a normal micro-array analysis and the MRI of brain damage I feel as though I know what I basically wrong with her. I think all of her problems stem from brain damage. Joseph on the other had is COMPLETELY different.

With Joseph having a normal MRI and DNA analysis but he is severely impaired in function I can only think there is something wrong that the doctors have not found yet. Joseph did have some blood work that showed some abnormalities. We discussed getting a muscle biopsy done. I will be working on getting the authorization re-approved.

If we get the muscle biopsy done it will be a BIG deal because we will have to drive four hours to Los Angeles and Joseph will have to be put to sleep. It would be like an out-patient surgery sort of thing. Very scary in some ways but it would be SO good to get it done and determine if he has any muscle myopathy or mitochondrial problems.

On the way home Margaret was getting restless. Sitting in a car seat for so long makes he cranky. About two hours into our return home Margaret got mad at James for some reason and the next thing I know he is screaming in the back. Then he says that Margaret bit him. I made her apologize. Man, it is rough making a car trip with her. She can get so hostile sometimes. Got to remember to put her on the outside and not between the boys. This would at least limit the amount of damage she could do because she could only reach one person.

I would guess most people would not be surprised when I say I was exhausted when I got home and couldn't have been more thrilled to stop for the night...lol.

Waiting, Waiting, Waiting...

All the medical work I have been trying to accomplish for Joseph is not at a stand still. I am not sure what the geneticist is doing. She has not gotten back with me. I think we are waiting to get approval to do a fresh muscle biopsy. Everything else medical is in limbo.

I am now working on getting the short records for the children and get medical exemptions for them. I would imagine this will take about a week to accomplish. Then the school district wants to send over the the children's teacher to see the home environment. So I will have to clean things up here but of course I am in the middle of making a mess because I am pulling all the tubs from the garage. Slowly I have been going through them and trying to be ruthless about getting rid of clothes. My hope is to consign the clothes in a sale in a couple of weeks. It would be great to get rid of the extra stuff that I am not using.