Stress & Stress Relief - The Irony of it All

I have decided that I am adding a lot of stress relief into my schedule as of today. The doctors are going to be the way the are as well as the bills - both more stress than help and so what if I lose everything I own. With little help on the horizon it looks as though I am screwed on that front.

But I can choose to do things that make me feel better, except not much helps when it is time to pay bills (I often get extremely ill at this time of the month and need to go to the hospital more than usual). So I have dropped out of a writing group that was not very open-minded about illness or other hard topics to discuss (a friend and I both received rude comments about the topics not the content or our writing skills but our topic). I have decided that I will work with the tools I have, a couple of specialized magazines on writing and focusing on my own style which is more like literature than a chic novel. I am not trying to write the everyday common novel but something that has description and feelings like the literature we read in college and had to really read not just flip through. The club I belonged too was basically write like they do or don't...requiring short stories for each chapter and I think that chapters should flow into one another to make a story.

Anyway, enough about them. I plan to also work on some games to keep my mind sharp. I recently bought some coloring books (graphic designs) developed for adults and used as art therapy for medical illness. My grandmother and I used to do these as kids so I think it will be fun. I was quite excited to find them and ordered three as well as real art marker to color them.

Once I discuss my need for physical therapy with my insurance company I am going to try and get someone to take me without a lot of cost since I can not afford it but my body/muscles are going away each day and my health is worsening because of it. Perhaps someone will take pity and see that I truly need to keep my physical strength to improve my heart and lungs which both are not working well as per my earlier posts. If not I will have to develop a program with my doctor for a few minutes a day at home, which scares me since I am all alone and could easily injure myself and not get help until someone comes home. That could make for a long day!

I have a few other things on my list and I am already listening to healthful music to sleep and to meditate. They have been part of my pain management program for a long period of time.

I still have a couple of specialist to see for more biopsies and tests but I have yet to find a compassionate doctor who will not make me wait months despite the increasing problems and number of masses and skin conditions, etc. Last week I had severe issues with my liver function and no one could get me in even though it was an emergency. Th ER does nothing for me except write me a note to see a doc since my complications are too advanced for them. I guess this leaves me looking for specialists again and hopefully ones that will tell me something and not just hand me $20,000 bills for a few tests and one visit.

My mother is approaching someone in her arsenal to see if we can take this further than my begging and we may even be able to look at my former employer for wrongful termination - I was let go because I asked to work part-time from home as a disabled person and was declined - not due to my skills. This is against many US laws and since they are now investigating it again they reopened the date of my ability to approach them for not letting me work a few hours from home on a sliding pay scale. But I don't think my doctors will let me work now, in the past she would have and I should be compensated for their illegal actions in some way. Perhaps then I would not have nearly the debt I have now.

I hope that one day someone with some compassion will say, hey your insurance paid us 100's of thousands of dollars each year for the past 4 years and you don't need to finish the rest since we know you have no ability in the near future to return to work..as per my current doctors letter to the former employer and SSDI.

Honestly, how hungry can our medical system be that it refuses to treat people based on the amount they can pay, this is part of my problems in getting a specialist and appointments with my general doc who I have had for the last 10 years. I hope this country figures out that not all of us are so lucky and don't plan to retire at 30 due to major illnesses...and they do something good for a change. It is people like me who become homeless and eternally sick or dead.

Perhaps the next President will help us out since I know I am not alone! I know many people who are in similar health situations as me and need a new education since their career in healthcare no longer wants them (not because we are toxic but because they can not slave drive us to work 70 hours a week and travel everyday). I would love to go back to college for a Master's of Fine Arts in writing but I know I can't afford to and since I have no money toward it they will not offer me full aid to achieve my goal and eventually be able to return to a new career and job that would pay the bills and get me out of the "system." it's funny how people only love you when you are healthy and want to work with you or educate you when you can offer them money. Because I have no money to offer they said they can not offer me loans since I am on SSDI and have no return to work date...umm, did they not get I could get a new career and even teach online with a new degree?

Now you know why I need stress relief and off I go to do some...as writing this has made me so stressed I will likely not sleep for the 6th night in a row! Gotta love the compassion in this world!

Debt and Chronic Illness...

I have been to some of the world's best hospitals trying to get help over the past month or two and all I got for Christmas was a bill for one hospital to the grand total of almost $20,000. As you know I never discuss the really personal stuff about my family or money on here because I like to keep some things private but this has gotten so far out of hand it stresses me beyond the breaking point. Those aren’t the only bills I pay; hundreds a month for medications, including those covered by Medicare; other doctor bills for regular maintenance of my various conditions; and hospital bills, etc. that have been building up over the years. I had recently just finished my last bills so getting all these at once were a blow.

I don't usually discuss the monetary stuff on here as I hate to share such personal information but this has gotten to be something I loathe and promise to battle once I am well...all I can do now is write about the people who fall between cracks in our health care system and receive little financial help.

Most of the doctors and hospitals have very few resources for people like me, they tell me I am too “rich” to get any help despite the fact my monthly medical bills are far beyond my monthly income levels. I have called several charities that are supposed to help the underinsured and uninsured but they offer little help. And once again this does not include the payment of a vehicle I need to get me to and from my appointments when I am well enough to drive there since public transportation is out of the question and not able to be done from my home to where the locations are for my docs. I have bills for food, and home and things just like everyone else but they don’t count that when they tell me “no mama, we can’t help you.” Part of the discrimination is probably because I am only 34 and on SSDI and Medicare…do I deserve it, they don’t even ask about my conditions and the reasons for numerous doctors’ visits each month.

And to think that I used to support the medical industry with my whole heart and soul believing it was doing well for the world and curing sick people…but what good is it if we can’t access it? This is why once I get better if I can’t do it before I will be building a foundation to help chronically ill people find help paying not just medical bills but their life expenses as well. Someone needs to help until the government is reformed to a point to where it can and will.

This week was spent leaving begging messages and writing letters for help. No one has gotten back or even returned a call, not even State Medicaid which I would qualify for if they took the time to add up my medical expenses and look at my actual income. It suffocates me when bill time comes because I end up only having pennies left each month and I can no longer even afford groceries. People forget that people in my condition need to have a place to live and food to get them better among the other necessities of life; I don’t even buy new clothes. The people who are supposed to help are too lazy or overwhelmed to actually do any work other than the standard forms which does not include those for exceptions like me and other long-term illness people.

This is when I wonder where the humanity of our charities and government have gone; only to help other countries and not their own people? There are a few trying to make a difference but they are beating their heads against the world. It also makes me wonder where all my fundraising friends have gone and where their friendship has as well…I would be doing back flips to try and help but I guess I can’t ask them to be me.

So when people question me about what I do for fun or why I want to change careers once I am better. I just look at them like, do I have money to do fun things, no! But why would you want to help other and make less money than you did before, well because my life priorities have changed and there is a huge gap in this world that prevents people from me from getting better…and don’t think the stress does not make us worse. The stress of bills actually makes us keep some problems longer and prevents us from getting better, I am sure you have read the studies about preventing illness and getting people better faster helps, well why doesn’t someone do it. One day I will do what I can to help and I won’t be living in my illness, I will have overcome it and will be helping others to do the same.

When you go through the things I have and see the bills even after insurance or Medicare you too would understand the emotional and physical toll it takes on someone who has not cure in sight. Being chronically sick changes you and I like to think for the better…

Please pray that I find a way to get through this financial hardship so I can rest and get better without the additional stress and the threat of losing the rest of what I have, I don’t even have my own home anymore, so there isn’t much left to take…

But for now I will just breathe deeply and try getting through the hard part of the month where I can deal with the illness but not the consequences of it, especially the financial ones that will take away my future as well.

A Great Story

And one I hope to never need but good to know it is out there in case I have another brain surgery or if you know anyone who has minimal brain function...what a terrific woman to give so much to people.

http://www.nytimes.com/2008/01/15/health/15tren.html?pagewanted=1&_r=1&ei=5089&en=3c86f6308c8e5e0f&ex=1358139600&partner=rssyahoo&emc=rss

Umm...can you say lack of memory...

...sorry there was so much repeat info int he latest two posts but there was a lot of new stuff that I just found out this week so if you read it and felt whoa, I am in the twilight zone, we were but there is new info so don't miss it.

New meds are screwing with me...

A New Year and a Few Deep Breaths

You probably have noticed, or maybe not, that I have been missing over the past month and a half. The cancellation of my surgery was a blow to my desire to get better now attitude and the holidays were not necessarily those a girl dreams of or remotely close to what I wanted them to be this year. But, this time of year is always hard for me…December 1^st marks my official disability date, then I grow a year older and go through another holiday wondering if I will be better for the next and finding the strength to make it happen…and of course, some people’s favorite, New Year’s Day. All of these mark another year of hoping for answers and my stubborn search for them. Each year it gets harder, not just health wise, but emotionally and physically to boot.

The past three months I have been taking writing classes trying to figure out how to tell my story, and it isn’t just about being sick…there is a whole lot to tell as some of you know in painstaking detail and others haven’t a clue as to where I came from and who I am today. In December many emotions overtake me and I fall into the helpless mode without even trying. But writing my story seems to help, even if no one ever sees it but my plans and hopes are to make a new career for myself if my old won’t take me back after being ill so long…the search so far has been full of rejection and in my heart I feel there is a new path and reason to my life. I am not sure what it is yet and how I am supposed to do it in this shape but it will come, of that I am sure.

Someone told me that I have learned my lessons about being sick and that “God” would not give me this if there was no reason for it. My illness is here to help me teach someone else a lesson and to make them understand. In my writing class one man understood. He is a doctor and he has traveled the world with a very blessed yet hard life. I admire this man though I know little of him except his words – our class was memoir writing so I got some insight to his real person. He told me that after reading many of my words and seeing some people like me all around the world he would never look at us or at patients as a whole the same ever again. My words had made him see what it is like to be a person in my condition. It makes me cry to know this and touched but I don’t know I deserve such praise. Lately it seems to come from odd places and people, a friend I barely know, a receptionist at my physical therapist, and a bunch of unknown faces I have never seen. I still am in touch and am so close to many of those who I met through my illness yet have never seen.

The month of December had me seeing specialists and getting more tests in the past month than I did pre-op…and that’s a lot with all my complications. There are still no answers and only more questions as there are more lesions in my body (I am not sure which they are since they are all referred to differently so we will call them lesions). I currently have more, one in my right lung, left ovary, a few in my cervix and a vascular one in my main vein from my liver to my kidneys. These are on top of the ones I already have and add to the complications in my life. This is why I cannot have surgery. Oh and I may have lymphoma that starts in the skin. More questions without answers, requiring more deep breaths. My doctors have no answers and no clue what to do next so I wait and continue checkups until we find the next path. My pain doctor gave me additional meds that seem to help but make me more tired than functional and I hate to be less functional than I already am, it steals the life out of you. I have been told that I look like a vampire came and sucked the life out of me, damn, too bad I can’t at least look a lil better. But I do feel like I have been bitten so my daily goals are small and I look to increase them as the days go one and the war refuses to be over.

For 2008 I am trying to focus on getting better, a battle I seem to be losing but refuse to stop. I also plan to write my life, my past and my future. Maybe someone will get that lesson and I will find the cure to what ails me so I can do what I am here to do. Whatever the universe decides it is although I have a strange feeling that I am already being used and don’t realize it. Will I publish is unknown to me and where is even a harder question. I may start another blog to post my writings there and to write about my life outside illness, all of this talk about being sick is not healthy to do 24/7. I need a break, a deep breath. This too I am working on by trying to improve my diet even more and to try and do what little exercise I am allowed, mainly stretching and light walks.

I hope to find a way to pay my medical bills which have now put me in more debt than college and I had just finished paying off the past years medical bills when the past couple of months surpassed the whole year combined. Somehow, some way, I have to take care of it with less than I earn in a year. I am not one to ignore my obligations so the abusive debt collectors hurt me more than usual, probably because I am not one of their usual loser clients and actually try but it isn’t enough to appease the greedy medical community. I have no clue how I will buy my meds this month as I am expected to pay two months Medicare out of my measly SSDI pay.

I think that’s enough for 2008 and will require many deep breaths…hopefully I can tell a whole different story in 2009. My goal this year is to prepare for a normal life (whatever that is) in 2009, so I can enjoy the life I was given and rebuild the one I lost. To mourn and to recover are hard things that do require time…that’s one saying I can stand-by in the past few years.

With that said I hope you all have a good year and keep reading and if you have any answers to my prayers it would make my day. Even if it is just a letter or knowledge about a foundation that can help as I am at a loss and need help more than ever.

And, finally, thank you to my few good friends who have helped prop me up when I beat myself down. Now take a deep breath and dive in, I have a lot of work to do…