Vegas Vacation and Realizations

We went to Vegas for about a day and a half this weekend. My husband’s daughter was going to be there for a week and we wanted to visit with her.

The last time we went, I had just been diagnosed with MS. I was still learning how to walk again since my lower half of my body wasn’t cooperating. In 2012, I told my husband, with any luck, I would go into remission and never have to use a walker in Vegas again. 

As we packed for this quick (extremely economical) trip, I told my husband we needed to pack my cane, walker and wheelchair. Funny how essential baby items like strollers and portable play pens have been replaced my assistive walking devises for a 31 year old.  Those three items pretty much took up my entire trunk. I told him, I’d rather have all three than leave one behind and need it. He agreed since the weather report said it would be at least 105*.  Heat diminishes my mobility and energy.

I ended up needing to be pushed around in my wheelchair pretty much the whole time we were there. The rest of the time I needed my walker. I used the cane in our room.

I’m not mad I have MS. I’m not mad that at such a young age, I need help to get around. I try to embrace it because I am aware every single day that these lesions could be tutors instead.

My hope with sharing my posts with MS, is that maybe in some small way, I can help others. It is also therapeutic for me to use words for me to process my thoughts. 

That being said, what infuriates me is that I have to fight for my disability since I’m not disabled enough in their minds. How many of you need to be escorted around places by others because you can’t stand or walk without help anymore? How often do you start to fall over for no obvious reason? If I was here illegally I would have access to all the services I need. Shelter, food, and medical care. 

We have never done Vegas on such a shoestring budget. My not working while we wait to see a judge has taken a huge hit on our bank accounts.  Our emergency savings account is long gone. My 401k is Long gone. We are routinely behind on bills because without income from me we can’t pay them.  California pretty much requires two incomes.

I know you all hear me bitch about my situation, but do you realize, you are all one medical emergency away from loosing the life you have worked so hard to build and maintain?

In two years we have gone from middle class to working poor (just above poverty level.)

When I sought out government services to help get us through a rough patch recently, we didn’t qualify. They don’t take into consideration your actual situation. Why you are in the situation you are in.  They punch you in to a system and then say no based on an out dated calculations. 

What programs help the people in my situation? People who worked hard and did the right thing their whole life’s but who is now in a situation that is out of their control.  Add insult to medical diagnosis. 

I am fortunate to have parents who can pitch in when I need it (which is all the time now) But what happens to the people who don’t have family help? Who can’t access government services for whatever idiot excuse the government uses. There is a whole group of disabled people falling through the cracks and no one seems to notice. I wrote my two senators about it; ten days later I got two automated responses. 

In order to stretch our pennies, I started couponing. I’ve started stockpiling household items that I can get incredibly cheap or free so I can start donating those items to our church’s food bank. Because let me tell you when you are down to three dollars left in your account and pay day is still days away, you still need toilet paper and laundry detergent, much less a $5 “donation” to get food from a food bank. 

When my husband was pushing me down Freemont St I saw a man in a wheelchair. His sign said : “Have MS. Can’t walk and now homeless. God Bless.”  I had no change to give him because we took only enough money for food since this trip to Vegas was about visiting with family not about gambling and partying.

In a different life I could be that man. 

PS – if you get the Sunday paper and don’t coupon, I would be happy to take coupons off your hands so I can donate more of these items.

I’m withdrawing so I can take control

I have decided to withdrawal my disability case. I did it for a few reasons but the main one was I was driving on the freeway and I was behind and next to a big rig and found myself thinking that I should ram my car into one of them and then this process would be over. My family would be taken care of by my life insurance policy.

I’m not a suicidal person and the fact that I thought that scared me. This whole process has been completely overwhelming and stressful.

Do I think I deserve my disability payments? Absolutely. My life has changed dramatically in two years.

But It was going to be an uphill battle, I was more than likely going to loose. My fate was going to be in the hands of a judge that had seen it all. My age and education were against me. Every honest thing I have ever stated will be twisted and used against me.

It is frankly a fight, I no longer have the fight in me, left to fight.

I kept hoping that after I hired the lawyer, that I would start feeling better but every day my anxiety just got worse. Everyday I just felt more out of control. I know I’ve talked about my dark depression before, when I get in that mood, I have thought maybe the world would be better off without me, but I’ve never thought about ways to actually off myself.

So I decided, I’m going to try and sell Miche full time. I’ll continue selling cupcakes. I might try to sell some stuff on eBay.

I’ve also started looking into classes so I could get a trade. I’m leaning towards tax preparation. I can do it in the cooler season. I can set my own hours so I can still get the babies to school and speech. It’s a three month course. I need to figure out how to pay for it. But it would give me a trade.

I know there are people worse off than me. I really try not to be whoa is me. Life hands you some tough cards sometimes. I know that we are still going to struggle for awhile financially but at least my destiny will be back in my hands. At least I can take some control and do what I can to help get us out of this situation. It may take time and even if it takes 15 months to get us out of this rising water, at least I’m doing what I can so we don’t sink. Ultimately, I just couldn’t wait 15months for a decision and let us drown in the mean time.

Uncomfortable Miserable

I’m very uncomfortable when I’m miserable.  Feeling doomsday and gloomy is not the skin I prefer to wear. In a normal mood, I’m cheerful and sunny.

Normally after feeling like this for about a day or two, I would come up with a game plan to get out of the funk I’m in. I would start attempting to make changes and I’d eventually start to feel better.

But I haven’t been able to do that right now because I feel like waiting for disability decision is out of my control.  (Plus it angers me so much how the government drags their feet. I wrote a strongly worded letter to my 2 senator’s but…yeah…) If the process took like 3 months, or even 6 months, I don’t think I would feel so overwhelmed at the wait, but 15 months is such a long time and I’ve been fighting for 10 months now.

I’m just not sure how I can trick my brain into feeling better about it. There is nothing I can do to change the time frame.  I’m worried about those 15 months and what they hold. I’m trying to look day to day but the 15 months is lurking at the back of my mind. Will we loose the place we rent, will we have food, can we buy the babies clothes for school?

I was driving home yesterday and saw these two teenagers standing on the corner asking for donations for a funeral.  The picture of the lady didn’t look much older than my age. Somewhere that family is struggling to bury their loved one. Its heartbreaking and I felt like an ass for complaining about my situation.

So I guess my first step is trying to focus on my blessings.  I have amazing parents and an awesome sister and brother, that would do anything they can to help me. We have a roof over our head and a place to go if it gets worst before it gets better. We have food in our fridge and clothes on our backs. I have life insurance so my family wouldn’t have to ask for donations.   God blessed me with my 2 beautiful,  healthy,  crazy energetic babies. They are sensitive souls who always give me kisses and tell me they love me.

I don’t want to fail them. I want to teach them that life gets hard, you figure it out. That there’s always a solution. 

I just have to figure out what the solution is to get me out of this funk.

A (Sort of) Political Rant

I try to keep my political views to myself (of if you ask and I’m feeling feisty) but something has to be done for helping AMERICANS first. If there is no money for public services let’s cut out who gets what. Please hear me when I say, I’m not against immigration. But there needs to be a correct way to do it. When I took a few college courses after I got married, I “qualified” for a grant I didn’t even apply for because I suddenly had a Hispanic surname. I never got any help when I was Caucasian. Our vets need to have access to services. Our disabled need to have access to systems that are in play. I get that the government doesn’t give a F about me, Sarah. But I would trade MS for my old life any day. I am a good person, I paid into everything I should, I’ve gotten two speeding tickets and paid my fines. It shouldn’t be such a battle to get benefits that are mine and that I have medical nesicity for. I get that everything I paid into for 15 years didn’t go sit in an account marked for me but now that I need it, why is it so hard to access it?

I met with my attorney today. He’s a good guy, you can tell he’s in it for the people. But he gave it to us straight. After 2 denials, It will be at least a year before I see a judge and another 3-4months before I get a decision. They do not care if We starve in the process, they do not care if we have to live out of our car. They want me to give up, and quiet frankly I want too. I don’t want to wait a year for them to scrutinize every honest thing I’ve stated and then have them twist it around. We don’t qualify for any federal aid but we can’t buy food or pay our all of our bills. California is a two income economy. If we move, I have to start the process all over.

He said to prepare for that even if I win, they will make me requalify every two years. He said because I have no college education, I need to prepare for them to say, I can go sit at a gas station and take payments. They don’t care if it takes me down in pay because Its work and that’s all they care about.

I signed him on as my attorney but I’m feeling so defeated and we haven’t even begun. I get that he will help me fight this battle but why does it have to be such a battle?

You don’t think about the struggles of the few when you hear about the masses but I’ve always been honest in my posts about MS and I’m losing hope….in the system, in me, in my faith.

I didn’t sign up for MS. But I’ve fought it with humor and grace for two years. I’ve raised money so we can find a cure and for the first time in two years, I just want to give up. I feel like I’ve already lost and I don’t have any fight left.

Sleep (optional)

It’s getting hotter and sleep is becoming harder.  Last night I stayed up until 2:30 (after watching a Rom Com on Netflix) and then laying there waiting for sleep to come.  It’s been about 80* at night and upper 90’s in the day. Happy June to me.

Also my fingers are fat and my wedding ring is getting too tight to wear. Which is unfair because I force myself to drink WATER. Oh well. What to do?

I made my second YouTube  video this weekend. That was fun. I have a list of topics no one probably cares about but it’s distracting me.  🙂

J just woke  up evidently, from a 3 hour nap, not a good night sleep at 700pm.  Guess no sleep again for awhile.

Trying to look on the bright side, more Netflix to check out.

Aside

So I have interviewed a lawyer I’m going to higher. He told me obviously nothing is guaranteed and I need to prepare that I won’t see a judge for at least 12-15 months. He said he wanted me to understand the financial ramifications of that.  I told him that I’m frustrated by it and he said, “yes it’s a broken system and you have to battle.”  (And I was sold right then and there because that’s what I’ve been saying. Lol) I also told him I wasn’t looking forward to fighting for something that I am entitled too.  He said if I give up like they hope I do, then they automatically win.  It’s still super stressful though but forward I will continue.

i started writing my Walk MS thank you cards. I couldn’t sleep last night so I started writing them out.  I wrote out 31 last night and it’s only for people who straight donated; it doesn’t include any of the people who supported me through my fundraiser! I only ordered 75 so I hope I have enough.  If not I’ll just go buy some generic ones. We have until the end of Sept to raise about $2000 more to be an elite team next year with a variety of fundraisers going on so I hope we make it!

I’ve been having fun writing out topics for my MS videos. I’m only going to do a few more to see if anyone watches.  If they do, I’ll buy a video recorder because it’s a pain from my phone. My first video has 56 views so that seems like a promising start.  

JLo is done with school.  In the fall Lo will start transitional kindergarten for half day. J will do speech twice a week and preschool half day four days a week.  Right now I’m loving that we don’t have so much shuttling around.  I’m trying to plan some summer activities so they are learning over the summer.  I’m having a very hard time executing it though.  Great in theory but hard in real life.  By brain doesn’t work that way.  I’m not sure it ever did.  I never played teacher. I was always the prinicpal or bad kid.  

Anyways this is a rambling all over the place post so I will get back to writing out more thank you cards.

I’m so blessed to have to write as many as I do, because there are so many people that support me.  Lucky gal!!