Life with a rare disorder

I have Gaucher's disease, Hemophilia, Thyroid disease, and managed type 2 Diabetes. Needless to say, I'm stressed, depressed, and beat up. My focus is Gaucher's disease for the most part, followed by Hemophilia. These two affect me the both in terms of day to day life and overall health. What is it like to live with the stuff I have? I'll be blunt.

It fucking sucks. I have been dealing with lower back pain for a little over 3 years now. I have arthritis in my lower back right at the base of the spine and tail bone. Today my orthopedist told me that i could look into injections, but it is extremely risky and he didn't recommend it. Since I'm a Hemophiliac (38% Factor VIII), I could get an internal bleed at the injection site, which could put pressure on the nerve and cause nerve damage. This nerve damage could lead to paralysis. Yay.

That brings me to my A.D.D. form of thought. Doctors. Thankfully, I have an understanding employer who knows my situation. I have to get infusions every 2 weeks which takes about an hour just to set up (time away from work). I have to visit my Gaucher's doctor every 5 months. He is 250 miles away, so I have to take a day off work to drive 4 hours, see the doctor for 15 minutes, then drive back home for 4 hours. I have to fill my tank twice (there and back), and at these gas prices, I need a freaking loan. Never mind the wear and tear on my car. Why travel 250 miles? Because that is the closest Gaucher's specialist who actually gives a damn about his patients. Then I have to pay the copayment. Oh, and Gaucher's requires a CHITO test to monitor the disease and make sure it isn't getting worse. Fuck-head Florida Blue doesn't cover the only lab in the state that performs this test, so I have to come up with $350+ out of pocket to pay for it. 100% my responsibility. Add on the cost of the medication to keep my Gaucher's under control. Without insurance, my dose and my brand drug costs $30,000+ per month. That is thirty THOUSAND dollars per MONTH. I barely make that in a year. With insurance, my copay is $120 per month.

I have to see my primary care physician every 6 months. This is for regular checkups. Except I never get to see him only twice a year. With my back, I'm going to him every 3 months or more. Add on the copays, plus the cost of medication I'm not supposed to take because of my Hemophila. So now I have to take time off work every 3 months or more to go to my primary care doctor. Luckily, I'm salary, but I still have to make up the time, which means less relax time and time with family.

I see my OBGYN once a year, but because she's playing around with my woman health, I have to call her every couple of months telling her I still get my period twice a month and now have so much acne, I look like a 14 year old. With gray hairs. More time away from work to make a phone call and answer her nurse's call back.

All this makes me nuts and depressed. Suicidal? Sometimes, but never enough to actually put deep thought or try anything. Just along the lines of "I can't take this anymore, I don't want to live like this anymore, make it all end." So now add in a psychiatrist. And more copays and drug costs. Oh, and more time away from work. I see her every 3 months. The antidepressant I'm on works so well, I have NO emotion at all. I'm no longer lovey dovey, excited, happy. I'm "Ok" to everything. I might lose my job? Ok. 3 year anniversary with a wonderful man who loves me so much? Ok. The last drug gave me Diabetes, osteoporosis, and fucking lactation. That one was fun.

I had to go to physical therapy for my back for 4 weeks, 3 times a week. At $20 each copay. And more time away from work. I bought a $350 computer chair to try to help with my back. All out of pocket.

Getting help with all this is damn near impossible. I have to fight with insurance, try to come up with hundreds of dollars. Yes, there is assistance to help, but only if they have the funding. Which in the beginning of this year they did not, so I had to pay for MRI copays ($500), CHITO test ($350), and I can't remember what else out of pocket. We're talking about around $1000 that I have to magically pull out of my ass. When I first got Florida Blue, they refused to cover my Gaucher's medication because "there [wasn't] enough proof I needed it." I was refused my life saving medication for over a month because there wasn't enough proof. I've been on medication since 1992, every 2 weeks with the exception of Genzyme's fuck up when they had to close shop for a year because of a contamination. The drug company gave me free drug until Florida Blue worked their shit out. They demanded I get certain tests done to prove I needed it. No lab that performed the required tests were covered by my insurance. So they required me to get certain tests done but did not cover the only labs who performed the tests. In the entire Central Florida area, within 100 miles from me. They didn't look outside of 100 miles. They finally settled for a different test and allowed me to get my medication. How kind of them.

With all the work I have to miss because of my illnesses, there is no way any other employer would allow me to stay working for them. I would be unemployed with no way of paying my regular bills, let alone my medical bills.

Clear Proof Challenge Part 1

I have been selected to try Clear Proof courtesy of Influenster and Clear Proof. My package is in the mail! I can't wait to get it and start the process. I will use it as directed for 30 straight days and hopefully see clearer skin.

Bullying

It was almost like looking at myself in this video. Teachers told my parents I needed therapy to learn how to deal with my bullies. They also told my parents that the threats on my life that I got on the playground was just girly stuff. Nothing happened to my bullies. I had to change schools and drop out of the things I enjoyed. I'm 33 and have no self esteem because of the bullying I got from head start till 8th grade. Being told that you are less than others while growing up fucks with you emotionally forever.

Post by Scott Sastre.

Over it

After paying all my bills for the first half of the month, I thought to myself, ok, I'm good. I have enough money leftover to buy food so my boyfriend doesn't always have to pay. Oh, it's July - my WoW subscription renews this month. Ok, it's only $78 for 6 months. I still have money to get a new computer mouse. My current one is glitchy. I think I fried the USB fob because my computer gets fire hot when I play WoW. I found the mouse I want on Amazon refurbished for half the cost it is on Tiger Direct, and almost $20 less than a new one on Amazon. I've been suffering with a faulty mouse for a while now. I just haven't found one I liked, nor could afford. Oh yeah, my birthday is this month. That means I have to gift $106 to Florida so I can drive legally. I can't afford 2 years worth of registration, so next year I'll be paying more. I paid off the kitties' vet bill this month, so I have that going for me, which is nice. My consolidated student loan isn't due until halfway through August, so I'll take the money I would have paid for that, and put it on my credit card to help pay that down. I'm still paying for the down payment of my car on that thing.

The water company says we used over 40,000 gallons of water last month. I call bullshit. That's enough to fill our pool 4 times. We did not use that much water. According to the test they told us to do, we don't have a leak and their equipment isn't faulty. Again, I claim bullshit. So instead of putting food in the refrigerator, we have to give our money to the water company. Last night, we discovered our air conditioner - that we rarely run because it's too damn expensive - is dripping water, and a lot of it. We have no idea what's causing that, how to fix it, how much it will cost to fix, nor if we can fix it or if a repair person has to. So now there's even less money to buy food with.

I have been trying to keep and grow money in my savings account. I have a tendency to overspend each paycheck. Sometimes I forget about a purchase I made and have to transfer money from my savings to cover it. Other times I want to treat my boyfriend instead of having him pay for everything. Sometimes I just want to buy the damn thing I want. I'm 32. I'm 32 and I have no money. I've been in poverty most of my 32 years. I work full time, have a grant to cover my health insurance, have no housing expenses because I live with my fucking parents, yet our fridge is almost always empty. My family is overweight because we can't afford to buy healthy food; only processed shit. We never order out or go out to eat. Usually just for birthdays.

I'm over it. I'm over being poor and not being able to afford the things I want. I'm over not having food in the fridge. I want fruit, vegetables, fresh meat, something to snack on. I want to put the air conditioning on in the house when it's 90 degrees outside. I want to move out. I live in America - land of the free, home of the brave. Why has my country allowed this to happen to most of it's citizens? Why is everything so expensive, and pay so little?

So now I have to decide how much money I can give my parents to help cover the cost of the air conditioner and water, or do I give them extra money for food? Will they even take the money from me? I need money. I try to do some freelance work for some extra cash, but I'm never chosen to work on the project. My online businesses all fail, and I'm just throwing away money with them. How am I supposed to convince my parents not to get me anything for my birthday because I'd rather they put the money towards food? My back has been killing me. I wanted to put my savings towards a new bed, but that's not going to happen now. Especially if we need to replace our fucking air conditioner - which barely works to begin with. I've been dieing to visit my friends back in Colorado. I miss them greatly, but I can't afford to buy a plane ticket to visit them. I have to plan out years in advance when I might be able to go out there.

I just don't know what to do anymore.

Herbal Essences naked shampoo, conditioner, and dry shampoo

Today I received my #InfluensterVoxBox complimentary for testing purposes from #Influenster and #HerbalEssences. I am most excited to try out the dry shampoo. I use dry shampoo quite often in between washes. I haven't found one that makes it look like my hair is freshly cleaned yet. I'm hoping Herbal Essences dry shampoo does the trick. I will blog more tomorrow with my results.

I am currently using the shampoo and conditioner. I like how it makes my hair feel, and the smell is pleasant. It is a clean smell, not the typical floral fragrance Herbal Essences is known for. Personally, I think the fragrance is a little masculine. It kind of reminds me of the body wash from Irish Spring that my boyfriend uses. At least if he runs out of shampoo, he can use mine and not smell like he used mine!

But overall, I am very satisfied with the product, and will definitely buy it again.

Facebook destroys relationships

I’ve been pretty vocal about how much I hate Facebook. Honestly, who hasn’t decided they didn’t like one of their friends as much after all the political stuff they post? I mean, what kind of person thinks like that anyway, right? Facebook is almost fully to blame. With the instant posting of news updates, memes, false stories, etc., all types of relationships can end in an instant. And to make is worse, Facebook bombards you with everything your friend does: Joe Shmoe commented on this post, Derpina liked this post, Derp commented on this page. It’s never ending. Even more horrific, is that you can’t control what your friends see you do on Facebook. You have no control over your own activities and content. You used to have the option to unsubscribe from Likes and Comments for each friend. You had to go through your 300+ friends and do it to each one individually, but you had that option. Now, it’s all or nothing. You either see every little thing your friends do on Facebook, or you don’t see anything of theirs on your news feed. Don’t even get me started on the stuff Facebook hides from you because it doesn’t think you are interested in seeing posts from friends you don’t regularly interact with. (Maybe it’s because you will show everyone how I interacted with them, and everyone is tired of seeing my hundreds of likes every day.)

I finally found a friend I had when I was 6 on Facebook. It’s been almost 25 years since I’ve seen or heard from her. Thanks to Facebook telling me everything she commented on, liked, and posted, I discovered what a hateful and bigoted person she grew up to be. Sad thing was, I couldn’t unsubscribe from her likes and comments, nor shares (shares was never an option to unsubscribe from). I made the tough decision to just unsubscribe from her altogether. I didn’t want to unfriend her, because I still wanted to stay in touch, and just not discuss political crap with her. Apparently my political oriented likes and comments on pages I subscribe to, not her, made her decide to unfriend me. There are quite a few people I’m friends with that I’ve learned what type of person they really are, based on their likes, comments, and shares. I’m sure they think the same about me. Even my boyfriend commented about unfriending me because his news feed shows nothing but my likes. I mean really Facebook, the world does not need to know that I liked a photo posted by a page that none of my friends subscribes to. Give ME the option to broadcast my activities to my friends, don’t make it up to them whether or not they see what I do. I should have control over my own activity.

This doesn’t even have to be specifically about political topics either. There’s a couple people on my friends list that post a new selfie every 5 minutes. It’s flipping annoying! Again, it’s an all or nothing subscription. I can’t just hide certain activities. Facebook shows us the stuff we don’t want to see and hides the stuff we do want to see. The ONLY reason I’m still on the craptastic site is because my friends and family are on it, and they refuse to go elsewhere “because no one else is on that site.” No one communicates with each other anymore. It’s all by posting photos and statuses on Facebook. No one calls me to talk to me, and I don’t call them. After moving away from all my friends a couple years ago, the Internet is the only way I can stay a part of their lives. I just wish it wasn’t through Facebook.

Sallie Mae can burn in hell

The whole student loan idea is the worst form of debt anyone could ever have. It ties you down for your whole life in unbreakable chains of high interest rates, flooding fees, and in a hole so deep, you'll never dig yourself out of.

I'm mainly referring to the evil empire, Sallie Mae.

It all started when I was duped into attending Westwood College. It's a for profit school that has locations all over the country. They give you promises like being able to retake classes for free after you graduate to maintain your degree. Taking an updated HTML class, for example, as the industry changes.

What they don't tell you, is that your tuition will cost more than a small house, your degree won't be worth the paper it's printed on, they cancel your program after you've already started, and they won't teach you the things you need to know to be able to get a job in the real world. Oh, not to mention that employers put resumes with Westwood College education in the trash. They brag about how many students get jobs in their field of training. I guess janitorial services in a building that has a company that does web design is in my field...

My first red flag should have been the "sale" the school was having "that week only" for a decreased registration cost. "This week only" it was $25 to register for school instead of the usual $100. My second red flag should have been that I couldn't pick what classes I wanted to take, nor could I buy books myself or buy pre-owned for that matter. They were all done for me. Convenient at the time. I paid $400 for a statistics book. They don't offer selling the books back after the class is done.

What did it for me; what made me "drop out", that is, was the fact that I was teaching my web design class how to create a basic, HTML page. There were only about 5 classes left to graduate, mind you. A couple of my peers had no idea where to put the <title> tags, <body> tags, or <html> tags for that matter. And they were graduating in a few months $80,000+ in debt without the skills to get the job they want in order to pay back the loans. The final straw was when I stopped my program director in the hall outside my class real quick, asking, "when you have a moment, I'd like to go over some concerns I have with you." He followed up immediately with a very loud, angry voice, storming into my class room, asking the teacher if he was planning on teaching a certain topic at all this term. The teacher glared at me and replied to him "yes." That wasn't what I wanted to bring to the program director's attention, nor did I feel it was appropriate to do that while class was in session. This director would also discuss other student's information, including attendance situations and failing grades, with the teacher in front of the class. Not even excusing themselves and going outside. Nope, we all got to watch the show and hear about how our peers were deadbeats.

Fast forward to today. I discovered over the weekend that my minimum payment for my Department of Education loans went from $108 to almost $200. Of course, they are closed on the weekend. I call today to find out I was on a "graduated repayment plan." Every 2 years, the payment "gradually" increases, and this was the month. While I said doubling the payment is not a gradual increase, there is little I can do to alleviate this new burden. My options were:

• Put my other DOE loans on the same gradual plan, saving me $20 for 2 years (and God knows how much interest will be accumulated in the mean time)
• Put my loans on hold and only pay what I can for a determined time (again, racking up thousands of dollars in interest)
• Lower my interest rate a whopping 0.25% by going on auto pay (already at 6.8%).

While these would "help" me today, what about when the time is up? I'll be back at the price I'm at now, and then some. I would have added more money to the interest bucket and even less to the principal. And speaking of principal, my loan has barely made a dent in the 5+ years I've been paying on over $25,000 worth of debt. When I was unemployed, they lowered my monthly payments to what I was paying. They never told me it was a temporary plan, nor that the price would double. There was no disclosures, no paperwork, nothing I signed. Just a lovely chap on the phone saying "ok, I've lowered your payments for you."

What's most frustrating, is that there is NO way out of a student loan. They can't be discharged in a bankruptcy, non-payment results in being garnished up to 25% of your wages for the rest of your life, as well as garnishing your social security and taking your tax returns. Let's not forget what happens to the poor soul who was required to cosign on your student loans. Oh, you can't pay? We'll just go after your father who is retired, barely get's anything from social security, and still can't put food on the table as it is. We'll take 25% of his $1200 a month. 

Plus, I don't quality for a lower rate based on income. I make too much. Nevermind the fact that I have a $400 car payment, a $400 health insurance payment, your $300 student loan payment, another $100 student loan payment (from a real company, not a blood sucking, first born eating company like Sallie Mae), $200 rent payment, and need to be able to put gas in my car and food in my stomach. I haven't even included my other costs I pay each month like internet so I can work at my job, a cell phone so people can get ahold of me and to make doctor appointments, and the monthly medication and doctor visit costs I have for being born "special."

But as long as Sallie Mae's stock is $22/share, and they make $543 million in profit off the sweat and tears of those sentenced to a life of poverty, then what does it matter that I'm just another person who's soul was sold to the for profit organization when I signed the dotted line, hoping to improve myself and get farther in this world.

There's no way out. I will never have these loans paid off, and I will never be able to put money into a savings account, nor be able to retire. There is just no way out.