Hope brings about a better future

For the past several weeks I have worked on the same blog post. I think it is time to give up on that one and start anew. My darling boy now has daily writing homework for a minimum of fifteen minutes. He can write for as long as he wants. We have made an agreement that when he writes, I write. He informed me that writing on the computer is cheating because it checks my spelling but once I assured him that I could still make mistakes, he accepted our arrangement.

Dsylexia has played havoc with darling boys reading, writing and math skills from the time he was little. For people with severe cases of dsylexia, there can also be issues with short term memory. My guy is one of them. I never liked math because it didn't come easily but watching my son struggle over and over with the same calculations might nearly turn me into a math meanie. How dare it make things so difficult for my boy?! Why must it behave so cruelly when he loves it so? Despite the challenges, darling boy swears that he loves math and is going to be a scientist who uses math every day. I'm thrilled that I have managed to mask my inner math meanie enough that darling boy has hopes and dreams that may be difficult but not impossible to achieve.

While my insurance battle rages on, I've had to back off seeing certain physicians. Between the co-pays, the out-pocket-costs, gas, parking and some days, the simple act of getting out of bed to get to the appointment, getting myself to the care I need has become a greater and greater challenge. I've also had to accept that my frame of mind is much more dark than in days past. Accepting the darkness as part of the process is, frankly, terrifying. If I accept that I am truly as ill as I've been diagnosed, then that means that more than one dream for my life is dead with no hope of revival. This is not a place I had ever expected to be. Most people don't, I'm fairly sure. Especially when you are not yet 40.

A friend who I haven't talked with in a few months recently asked me to meet her "half way" in our friendship. She was trying to encourage me to move forward toward a goal I had set for myself and her follow up is certainly appreciated. What struck me was that I realized I can no longer meet myself "half way", let alone my friends. It is difficult to answer the phone when there is not much positive news to report. It is hard to go out when much of the process involves everyone else making accomidations for your needs. It is overwhelmingly sad to watch people's faces when they have heard more than they want about a medical condition or quickly change the subject because you have become to morose in your tone (like right about now in this blog post...). To have a mind that is still capable of doing the work it once did but a body unable to fulfill even some of the simpliest requests (despite looking for all the world that it is truly fine) has become one of my greatest points of frustration

The contrast to this darkness is, of course, the light of humor, joy and laughter that my friends and family bring to me despite my gloom.  The quick phone message, email or funny post on FB are deeply valued interactions. In order to create some of my own light, I look for moments in my day where I can give, do or say something to brighten the day for someone else. It is remarkably rewarding to make someone smile when it is difficult to smile yourself. Making children laugh has always come pretty easily for me. I can usually calm screaming babies, entertain cranky two year olds and make funny faces with elementary age kids. Being a mom, I appreciate when someone enjoys being around my child so I try to return the favor. In a way, this is a new version of an old dream. My darling boy is the love of my life but his father and I wish dearly that we could give him a sibling but for many reasons, that is not to be.

The darling boys struggles but loves math. He dreams of science and equations in his future. Perhaps some of this love comes from a father who loves science too, an honorary aunt who teaches math and shares her love of it with him, or his teacher who constantly encourages his efforts. My future is right now and my childhood dream has gone. For the moment, I may have found a little something to replace it. I've started anew.

Your tongue is your ambassador.

Blogging. Such an odd verb. I seem to recall that the first time I heard the word “blog” I thought the speaker had said “blob”. Frankly, words like blog or blob for that matter, have murky roots in the English language and therefore could be used to describe just about anything if the mass populous of any given community agreed to the terms of use. How else do we explain some of the news media’s most venerable announcers using a word like “tweet” to describe a valid form of communication? But I digress…

I have digressed quite a bit over the last several weeks. I had not intentionally set out to digress but isn’t that the truest nature of digression? In 2005, I wrote my first blog. Using Blogspot, the same place where you find my blog now, I captured thoughts and photos of my first visit to my husband’s homeland. I think people could leave comments but that was about it. Now, you can track mindboggling amounts of data about your site and the people who visit. At first this was fun. Oh look! Someone from Turkey has visited my website! Oh my, 14 people read my post today. Unfortunately, it did not take long me very long to go from appreciating the novelty of this data to developing an all-out business strategy around a one woman crusade to educate the world about how health care really works America. Perhaps this is what happens when intelligent people are told to slow down and heal. I think they tend to get fidgety. : )

Leaving my blog alone for a few days was supposed to force me to relax about the whole thing. A couple more days was supposed to allow me to back off on some of my anger about health insurance. Maybe another week would stop me from dissolving into tears at the mention of health care policy. So, I tried to relax and avoid blogging for awhile. And I avoided. And avoided a bit more. Avoidance doesn’t make things better. How many times I have to re-learn that lesson I don’t know. Perhaps this time it will stick. So, now that I have relocated my username and password for my accounts, I am back to blogging. For this next go round, I endeavor to be more constant. I strive to sound less angry. I’m not making any promises on either front.

So – here is a quick summary of the last several weeks of medical and family updates:

1.       My final appeal was denied. So sorry but we aren’t doing. Tough toenails, kid.

2.       I consulted a highly recommended law firm. They only handle cases having to do with getting insurance companies to cover weight loss surgery. There are four attorneys on staff. The founder of the firm is working on my case. I’m pleased to be working with her. I never thought I would have worked with three different attorneys in one year on three separate issues.

3.       At the attorney’s suggestion, I filed for a new appeal asking for the same thing but in a different way (and with all my evidence faxed in at the same time as the request – all 92 papes).

4.       Faxed new appeal on Nov. 30^th. Insurance company claimed they got the request on Dec. 7^th. I called twice a week with no commitment about when an initial decision would be made. My physicians started calling. On Dec. 30^th, my endocrinologist was told a decision would be made on Jan. 6^th.  

5.       Dr. called on Jan. 7^th. Insurance company said “She cancelled her policy. We don’t have anything to do with her anymore”.

6.       Husband talks to HR at his company. HR swears that all they did was make policy adjustments. What they actually did was change policies. We have to start over again.

7.       Dr. Northgate, the rheumatologist, determines that I have an unusual form of rheumatoid arthritis. We start trying new drugs. Things don’t get much better. Try more drugs. Things get a tiny bit better. Start adding drugs together. Things get a tiny bit better. Now adding really expensive, immunosuppressive drugs. Still waiting to see if things get better.

8.       Our dog gets sick for seemingly no reason. Vet does Xrays and finds he has been shot with BB pellets. Six times and at close range. Within four weeks, he collapses, cannot move and we are forced to put our beloved nine year old dog to sleep.

9.       In doing my year end accounting of out of pocket medical expenses, I realized that I have to cut all my weekly visits to bi-monthly appoints or I will owe each of my providers several thousands of dollars by the end of June.

10.   Dr. Olive’s medical practice wants to up her billable rate. She warns me well in advance and tells me not to worry because she has informed the billing office not to change my fees. They billing office screws it up any way. After a month of my physician negotiating with her own clinical practice managers, she gets them to accept a reasonable rate but all my appointment times are significantly shortened.  

11.   All my prescriptions have to be transferred to a new mail order pharmacy. I spend over two weeks and a total of three hours on the phone only to be told that my order exceeds the maximum out of pocket costs they can bill for and my meds can’t be sent. After I approach the verge of screaming, they decide to make an exception and send my medication to me as soon as I pay them $270 up front for my co-pays. They will be sending my order by personal courier because of the “high value” nature of the drugs.

Despite all this negativity spewing forth from me, my friends still call. They take me to lunch; they send funny email and share silly things with me on Facebook. My family talks with me and loves me as I am. Friends at church offer prayers for my well being and for healing in a time of loss. My little break from “blogging” has shown me much more than I originally imagined. After dealing with health and disability insurance, I noticed that I was feeling very unimportant, of little valued and even lesser worth. While all the data from my blog can tell me who in the world is reading my posts, how often they are reading them and what link might be sending a reader my way, my ability to generate impressive data does not make me more valuable or useful.

I have realized that my value is not limited to my ability to work, to make people laugh or even to be someone else’s caregiver. Most importantly, those who value me are those closest to me – my friends and family. So, I head back into the breach, continuing to deal blows to the multi-billion dollar industry that would just like me to go away. As long as those I love want me around, I will continue to fight.