Thursday, February 07, 2013
For those who have an idea of what I've been battling, and how incredibly difficult my life has been lately, what do you think could happen next? How about this:
My neurologist is giving up trying to stop the status migranosis. She refuses to do the standard treatment that has been used for decades because she doesn't believe in it. The treatments she has tried (4) have all failed or made the headaches or another one of my conditions worse. She has also failed to find why I keep losing blood flow and nerve signals to my extremities for no good reason and why my muscles keep giving out. She's ignored the orthostatic intolerance (blacking out frequently when I change body position) also. I think I make her feel stupid and/or she thinks I'm completely faking it because I'm not statistically normal. Of course, the neurologists in Milwaukee aren't willing to do much of anything themselves because they expect the local neurologist to do it since I can see her without having to fly across WI for an appointment.
I can no longer afford to see my GI doctor in Philadelphia and the GI doctors in Milwaukee are refusing to even consider taking on my gastroparesis (paralyzed digestive system). They do want to look further into my eosinophilic esophagitis (allergic reaction preventing the esophagus from working) but refused to give me an appointment for the testing because the doctor didn't turn in the orders. Then she all but demanded I show up there immediately for testing, no matter how risky and horrible of a trip it would be for me. When I said I would not risk my life for testing that she didn't deem that important a few weeks ago, she got huffy. When I tried to set up the appointment for late March or early April (when winter will be wrapping up and the flight on a 4-5 seat plane won't be as dangerous for my other conditions) they refused to give me an appointment because they 'don't schedule this test out that far'. Doesn't matter that I'm traveling 350+ miles, have to set up the trip with the non-profit that flies me, with family, and schedule it around other doctor appointments - I'm supposed to bend to their every whim even when they've had an epic fail.
My primary care doctor is playing games with me again. I have several mental health issues (when you have as much medically wrong as I do, and you can never again be the person you once were, let alone be who you want to be, because of your diagnoses, of course you'll be depressed and anxious!) and she's trying to claim that those are my ENTIRE problem because they can't fix the physical issues and/or she doesn't actually understand what several of my diagnoses are. Seriously, she admits she's never heard of some of them and never knew that some of the others could ever be as bad as I have them. She's trying to convince me to give up finding the other diagnoses that I was told by other specialists MUST be there. Having such a wide range of diagnoses is so unique that there must be something that's missing to tie it together. I've been told to keep looking and keep seeing specialists. She sounds like she wants me to stop and I actually have to delve into medical terminology to speak with her on something closer to a doctor's level to make it clear that I AM NOT FAKING THIS! I'm not giving up on her though, because I know she's been trying to help me; she's just so far out of her comfort zone that she can't process what's happening.
I also need to get an appointment with a vascular specialist and perhaps a cardiologist. My primary doctor all but said most vascular surgeons are jerks, so it's doubtful they'll want to deal with a unique case such as mine. Which means if I do get an appointment, I will probably spend most of the time fighting for them to just listen to me.
I have been without any income since April 2012 - after my short term disability ran out. The long term disability company denied me benefits by claiming pre-existing conditions (which is crap) and by sending my denial 3 days after I faxed (and followed with a phone call to ensure the fax was received) proof of 5 new diagnoses that have absolutely no chance of being pre-existing and can't be anything but disabling... which they promptly 'lost'. I had hoped to send in an appeal but I am not currently capable of doing it myself, so it took months to find a lawyer, then a month and a half to convince any of my doctors to help with the appeal (my primary is the only doctor who would submit anything - the rest have a mistaken belief that their notes can take the place of legal documents). In mid December the appeal was submitted and I was supposed to be approved or denied by February 1st. They didn't. They decided to delay the case for another 45 days; when I called to ask about what was happening they were snarky and told me I never gave them any paperwork about the new diagnoses - which is the paperwork I submitted 3 days before their denial. I am down to $500 to my name (waiting for nearly $1,000 in reimbursements from the state to cover my COBRA costs) and if the estimate I was given for how much I should be getting from LTD is correct, they owe me enough to pay up the $4,000 I'm behind in my mortgage, $10, 000 I owe my parents, and several thousand I've racked up in credit card bills (I never carried a balance until November 2012 - I've had my main CC since 1999).
Of course, the social security disability is in limbo, and will probably be delayed for another year or more until I can get in front of a judge.
Speaking of my mortgage, I got a letter today saying I'm going into foreclosure. My social worker said that the county should be able to help me with my mortgage since there is NOWHERE to put me and if I lose my house I'm homeless. She said that I have to be pretty much out of money and that being a few months behind should help my case. Apparently they waited so long to even consider it that now they've determined it's not worth catching up my mortgage and helping me - even though there are no open waiting lists for section 8 housing, they will not put me into a nursing home or assisted living facility, and any other place they could put me into will put me on a waiting list for a year or two if I'm lucky. So unless I get a few thousand dollars and some income soon, I will have no where to live. And anyone thinking I should move in with family, my sister and I barely speak, my parents have serious mental health problems (and my mother has been physically abusive on top of that for a large portion of my life), I don't get along well with pretty much any of my relatives, and most of them live in areas that lack adequate medical care, especially considering the demanding nature of my conditions and the obscene number of doctor appointments I have each month. I also have no friends I can move in with as most of them have thrown me away because I'm 'too sick'.
Today I also got a letter that there is now a lien placed on my house due to a nearly $1100 unpaid bill for the deck the association replaced this past summer. The postwoman said everyone in the neighborhood got the letters, so it looks like the HOA decided to not pay the contractor. Yes, they fail at paying bills and fail at making sure that driveways and sidewalks are clear so people like me can actually leave their house without risking life and limb - nothing like trying to use a walker in 3+" of snow on top of 1/2" of solid ice. They also fail at enforcing the dozens of rules in the association - even when I complain over and over and over and over so they could've probably paid for all the decks with the fines they could've assessed!
BTW, imagine this: even though I've been shelling out nearly $500 a month for COBRA, somehow my insurance was cancelled on Jan 1st with no one able to figure out how it happened, why it happened, and who/what did it. So now I'm getting phone calls from doctor's offices saying I have no valid insurance. So while the health insurance company is trying to figure out why it was cancelled, I asked that they at least reestablish it! Way to screw over a person who has a lot of medical issues and way too many doctor appointments.
As I said I have $500 to my name. If the LTD had come through I really, desperately wanted to take a trip to Covington, GA, by mid March. I'm a big Vampire Diaries fan and at least one of my favorite regular characters is leaving to go to a spinoff so if I'm going to have a chance to meet the actor (in addition to the tour of the town and filming locations) I have to go by mid March (absolutely no later than the very beginning of April). There spinoff is set in New Orleans, so they probably won't be filming in the same area. I have had a ridiculous number of things taken from me because of these diagnoses, including the only 2 real goals I've ever had for my life: to be a good wife and mom, and I just wanted this one chance at something really positive in my life, but apparently that was too much to hope for. Even if the LTD pays out, it'll be too late for this trip to have a chance of being what I want it to be.
Can someone tell me how someone with as many medical diagnoses as I have, and having to face it alone (Please, no offense - I mean in person support. Understand I do appreciate the words and support of my online friends) when even being alone is becoming unsafe, is supposed to deal with all of this? I know exactly why my mental health is continuing to worsen and why I just want to spend my time sleeping, watching tv, and wasting time online so I can distract myself from spending every single moment of every day bathed in negativity and horrible-ness.
My social worker is supposed to be coming tomorrow and she's *supposed to* be bringing someone with who will be hired by the county to do household chores for me, since I'm unable to. (Imagine trying to scrub a toilet or tub when just standing up, let alone bending over, can cause you to pass out and strong smells can make you severely sick.) I'm not holding my breath.
I know I've asked for this before, but things are worse now than ever... If anyone is willing to write to the Ellen DeGeneres Show or to anyone else who might be able to help me try to get through this time, I would appreciate it. I'm willing to take whatever help I can get, though I know I may not deserve it. I'm desperate to find SOME positive that I can cling to because I feel broken, destroyed, and forgotten. I'm terrified of what's going to happen in a few months when I lose my home and have nowhere to go... especially because there's a chance I'll have to give up my cat and he's the best family I've got.
Friday, January 18, 2013
Take just a moment to read this short blog/article. Really consider the implications of what the author says.
I've been using the same imagery of linking the flu to what it feels like to have Gastroparesis, for nearly 2 years. It knocks people off their feet for a moment while the consider the implications. When you have the flu do you feel like doing normal activities? Do you want to take out the garbage, vacuum, cook or even smell food, go to work, play with your kids, or even stand upright? Usually that's a resounding NO. I've had a pretty bad case of Gastroparesis since July 2010, but I've had mild symptoms of it since I was an infant - over 31 YEARS of not being able to eat like everyone else around me. I was yelled at as a kid for not finishing food, for not eating fast enough, or because a single taste of some foods made me sick to my stomach. It has gotten worse over time, but the last few years the condition has become downright dangerous. Even so, I am still berated and harassed by a few people because I don't eat like others. Some people refuse to believe there is anything wrong with me because I 'look fit and healthy'... because having 11 medical conditions that are invisible illnesses isn't enough to make them see and believe how impossible it is for me to even stand some days. Yet many times I have gone out of my way and even risked my safety for someone else.
The words you choose to say might have one meaning in your mind, but mean something entirely different to someone else. Be careful of what you choose to say, and if you don't know what to say then be willing to admit it. It is better to admit ignorance than to pretend to understand. I am so sick of people saying I look perfectly healthy when every part of my body is screaming in pain, I can barely eat, and I know that most of my conditions are incurable, untreatable, or have failed to respond to treatments. I am not healthy and if they really looked in my eyes for a moment they might realize how much those words just hurt me, but instead I feign positivity and acceptance of their ignorance because I don't want them to feel hurt. I deal with hurt every day of my life, so I can take a little more, right?
Take note of what people say to you when you feel sick, depressed, hurt, or let down. What makes you feel better and what makes you feel worse? What do you want to say in response when you appreciate or hate what they said? If you have a friend with a medical condition, take a moment to really think before you speak. Sometimes just giving someone a hug and saying you're there for whatever they need means more than any other pseudo-supportive comment you can come up with. And please do not try to commiserate with them, because support doesn't mean one-upping someone, it means allowing them a chance to explain their pain. If they need to talk about what's bothering them, don't say how you've felt the same before because (this) happened to you. If they understand the same, when you need the support they'll sit back and listen to you.
Thursday, January 03, 2013
I think this is incredible and awesome. As someone with a partially paralyzed digestive system, I spent part of 2012 underweight due to an inability to digest food and was put on IV nutrition to be able to gain back some of the weight I lost. When I was underweight I felt absolutely horrible; while most of it was from my other medical conditions, I had no energy from lack of food and the shape of my body was not much fun to look at.
There is more to beauty than being skinny from malnutrition. Being healthy is beautiful. Living a healthy life is far more important than being able to count bones through skin. Children and young adults should not be comparing themselves to an unrealistic standard to determine their worth.
Wednesday, December 26, 2012
Right now there's a trending topic on twitter: #In2013NoMore
Some of the responses are jokes (#In2013NoMore 2012). Others are totally not unique or thoughtful (#In2013NoMore BS/laziness/excuses/dealing with XXX/end of the world predictions). Most of these are really stupid and have no meaning beyond reading the last word. Still, it got me thinking. What do I want to put a stop to in 2013 that I can make happen?
#In2013NoMore letting others' negativity, hate, and insecurities dictate my goals and dreams. To never try is to guarantee failure.
That's what I wrote. But that's only a small part to what I want to be different next year. I don't want others' problems to determine how I feel about myself. I'm so done with people telling me what I can and can't do because of the fake rules they've created about what are the acceptable and unacceptable ways for a person to behave. So what if I enjoy a tv show someone else thinks is stupid or if I abhor what they choose to watch? If I know I'm unable to do something because of my disability no one has the right to tell me to 'suck it up' and 'you're not allowed to complain.' I choose to stand up for my rights to be treated with respect.
I also am making the choice that while I am a giving person who enjoys helping others when and how I can, I will stop selling my own fragile self-esteem to anyone who chooses to complain about everything while never doing anything to change what they don't like. Every person chooses how they act or react to the events in their lives; allowing others to dictate our emotions and our actions is selling ourselves to the loudest bidder. I will always emotionally support those who strive to emotionally support themselves. It's my choice that in 2013 I will let go of those who are using emotional blackmail to force me to give them the negative attention they desperately crave. I will fight the urge to feel that I am a bad person if I can't help someone to change their lives when they are so entrenched in their unhappiness that they refuse to move beyond it. I can't help someone who refuses to help him/herself.
I noticed recently that there are some people in my life who do everything they can to suck every bit of happiness from my life (several of them are family members). As I reflected on it more, I realized they are unable to feel joy because they only feel alive when they are miserable. By emotionally destroying me and pulling me back to their level, they feel content because there is no reason for them to move beyond their misery. Because my deep empathy causes me to take others' emotions into myself, then try to haul them out of the misery with me, I'm drowning. So I believe the next stage in my recovery from my life-long battle with depression is to stop trying to make others follow me out of the misery. It is not my fault they are there and it is not my job to make their problems my own in order to fix them. I am but a single person, thus I have but a single person to fix. I must be okay with that. I will still help and support others, but when I am expected to feel guilt over someone else's choices it will be the sign that it is time for me to move on.
Here's to 2013 and a better me.
Sparkfriends, finish the phrase for yourself: In 2013 no more...
Friday, December 21, 2012
I know it's been thrown around that today, 12/21/12 is the end of the world. It's doubtful. At most, I believe it's the start of an incredible change. What the change is, how it starts, and the exact moment it starts probably won't be known until the change has affected us and we look back to find where it started. But that doesn't mean you can't make today the day that you decide to change your life and the lives of those around you. Think about this:
What do you wish for? What changes can you make and what plans can you put into action to make those wishes come true?
What do you need? What can you do to meet your needs (not your wants)? If there is a significant barrier, who can you ask for help?
Who around you needs your help to get what they need? There are people everywhere in this world who need help. Have you opened your eyes and really looked around you to find someone that can be helped with a small - or large - gesture of goodwill?
How can you make the world a healthier and happier place? Even a small act can make a difference. Can you spare a moment, a dollar, or a word to support positive changes?
Is there a reason you haven't done something you want to or need to do? Examine the reason(s) and debunk them. Is there really any reason big enough to completely derail a hope for the future?
By searching within yourself you will find answers for so many of the questions you have. You are the #1 person affecting your life and the #1 person who can change EVERYTHING for you. You are the only person who chooses how you feel, how you act/react to outside forces, and whether you are making a positive or negative impact on those around you. No one can do this for you and no one can force you to be someone you're not. It is completely up to you to decide how you will project yourself to the world.
If you knew for certain fact that the world was ending today or that you alone would die today, what would you do differently? Would you treat others better or worse? Would you give up or would you try to fight it in any way possible? Would you beg forgiveness from everyone you've ever hurt or would you tell off every person who has ever hurt you? How people act in times of crisis often shows who they really are as a person. What if you made your choices about how to spend the last day on earth, but then the sun came up on a new day and you had to explain why you did what you did? Would others understand and respect your choices or would they feel betrayed and hurt? How would you react if your choices caused you to get every hope, wish, and dream you've ever had, or if your choices destroyed everything good you've ever had?
No one ever knows for certain how much time they have left before tragedy strikes. Any bad event can happen unexpectedly and no one knows what day is their last day to prove to the world who they are. We must make every day be a reflection of the person we want to be, because last words and last moments can last forever in those around us.
Make today a day of great change for you. Choose what kind of person you want to be and work to be that kind of person. I guarantee people will take note and choose for themselves if you will be a help or a hinderance to them being the person they want to be.
Forgive yesterday, hope for tomorrow, do better today - because every day is a chance to do a little better.
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