Monday, September 24, 2012

Quieting The Soul


I walked to the mailbox today to retrieve Saturday's mail. A task that I avoided on Saturday because my new rule at the moment is to not retrieve the mail during off hours. That means no trips to the mailbox at times when I cannot call someone and address whatever crisis has plagued my poor innocent mailbox and subsequently my peace of mind. This includes Saturdays and anytime after 4pm. Otherwise the bad news just sits in my head and bothers me until I can take care of it. I was never like this before, but lately there have been so many letters and issues that need my attention and require so many hours of time on the phone that it has been the best plan I could come up with.


Sure enough, my mailbox was plagued today. After learning that my health insurance was reinstated last Thursday by Blue Cross and Blue Shield, I got an official letter in the mailbox this morning stating that I had until November 9th to get the situation with Social Security straightened out and get Blue Cross and Blue Shield a letter stating that Medicare Part B was in the Social Security system. (Medicare, Blue Cross Blue Shield, and Me). I have the Part B but nobody can tell me why it is not saying so in the system. Blue Cross and Blue Shield did not mention this deadline to me in our conversation last Thursday. If I don't have the letter to them by November 9th, I am responsible for all medical expenses incurred since July 1st. I have one word for that.


Astronomical.


I have had one medical issue after another since July 1st. Doctor's visits, medications, physical therapy, xrays, an MRI, mammogram, large amounts of blood work, the list goes on and on. My Sjogren's has been difficult to get under control for several months, there have been some eye related issues due to the Sjogren's, my asthma recently made a guest appearance, and a torn tendon was discovered due to a fall months ago that by this point, has not healed properly and has landed me in a brace and physical therapy in the hopes of avoiding surgery. So since July 1st, that is a LOT of money.


Now being a relatively intelligent person, I knew that at some point, Blue Cross would need proof of the Part B and that is fair enough. It may seem like six weeks is enough time, but considering what I have been dealing with since July 1st, it is safe to say I have sufficient reason to doubt that Social Security will have this issue resolved by that deadline. Now, for me, there is even more of a sense of urgency which means that the three-four hours per day I was spending dealing with this situation will probably continue.


This health insurance situation is one issue. There are more. Several more significant life issues that have just all collided at a time where I feel like I am a human version of The Perfect Storm. I guess the details are not as important as the result and the result has been that my mind and my soul has been consumed by a general state of chaos and anxiety. Not that "Oh, I am nervous" kind of anxiety but the heart racing, filled with dread, I don't want to face the day type of anxiety.


I realized today that I have let this happen to me despite my best efforts to do "all the right things" meaning exercising, eating well, and meditating. You know, what the professionals call "stress management". The problem is that I am so caught up in the storm that I have lost sight of the shore. I have let the chaos of other people and other situations, many of which are out of my control, affect my health and my well being. The one thing that IS in my control: how I react to these situations; but I cannot seem to get a handle on them as well as I typically would.


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As I was driving home from an appointment today, I took note of how beautiful it was outside with the car windows down. Fall is my favorite time of year and so far, I have had one day where I have been able to enjoy the cool crisp weather outside so far this season. We have a great yard; probably my favorite yard out of all the places I have lived. Most people would find that comment surprising since we live on a busy state road where the speed limit is 45 or 50 mph and most people do about 60 mph. But our house is set back from the street. Then there are the train tracks which are literally so close, maybe you could see the conductor waving to you if you peeked between the trees. Everything else however is nature; plenty of trees, birds, and flowers.



When I got home I decided to take my dog Molly out to the backyard and just sit. No books. No computer. Just her and I. We have these chairs hung out in our backyard called sky chairs which are suspended from a rafter and it had been far too long since I had sat in one. I love them. They are especially good if you have joint issues, well at least for me, because there are no hard pressure points when you sit in them. Molly, who never in her life has ever just sat quietly in the backyard without needing to be reprimanded for trying to take off into the woods, sat there quietly sniffing the air.



It is amazing how our dog companions know what we need when we need it most.





Molly and I sat there for quite a long time. I remembered why fall was my favorite time of year and why I need to spend more time outdoors even on those days when I am not well.



I felt the comfort of the sky chair enveloping my very worn out body.


The chaos in my head was replaced by the sound of the wind through the trees and the tinkling of the wind chimes.

The negative thoughts of worry were replaced by the sound of the birds singing their sounds of beauty.

I prayed.

I physically felt the anxiety leave my body.

Everywhere around me there was beauty and calmness.

Before today, I had not stopped long enough to allow myself to see it.

My soul had been looking for a rest. A rest from the storm. Hopefully it will continue to find these moments of rest so that eventually, it will find its way back to the shore.











Friday, September 21, 2012

Medicare, Blue Cross/Blue Shield, and Me



Found this kind of funny since I have a busted up foot and have no health insurance. Well, at least at the beginning of the story...


 
Note: This essay was written Thursday September 20,2012


My best friend, who also is disabled and struggles with her own chronic health issues, recently made a statement to me in reference to how I was feeling about unexpectedly not having health insurance. She said that for people like us, having your health insurance abruptly ripped away from you is like a person suddenly being laid off from their job. Those of us who are disabled or have chronic illnesses may depend on our health insurance every single day just like most people have to depend on having an income from a job every single day. Once that gets taken away from you unexpectedly, how do you feel?


Anxious.

Angry.

Fearful.



There is a long story to why I have lost my health insurance twice since July 2012 and when I have more energy and more answers, I will blog more about my experiences with the Social Security, Medicare and disability systems. Today, I just cannot because the system has me completely exhausted and worn done and I want this entry to focus on the miraculous thing that happened today. A thing that despite all the negative things we have to say about the health care system, the insurance companies, and the government, proves that there are good people out there who care.



The short version is this. I switched from my ex-husband's health insurance that I was on as part of our divorce agreement to Medicare Part B July 2012 as I found out I was being dropped from his coverage. I had been eligible for Part B for quite a while but chose to stay on his as it had better coverage and was more affordable. I had notified all parties involved about my decision and took all the appropriate steps and was told that if and when I was dropped from my ex's group coverage, I would be eligible for Medicare Part B through special enrollment which is what I did. Because of my extensive medical care needs and Sjogren's specialists that are only located in CT (I live in MA), I also signed up for a Blue Cross Blue Shield (BCBS) PPO Medicare plan; known as a Medicare Advantage plan. This became my official insurance for everything. It cost a lot more for premiums, co pays, drugs, labs, etc. but was my best option at the time.



Social Security Adminstration (SSA) made a huge error and dropped my Part B in mid July which in turn dropped me from BCBS. To this day, nobody can explain the error. It was a fiasco. They still owe me large sums of money that they mistakenly took from my monthly SSDI checks. Errors they have admitted to but have yet to set straight. However the health insurance was put back in place after approximately two weeks and life went on.



I contacted Congressman's John Olver's office in western Massachusetts to assist me in getting this money back. They began to diligently work on the issue but meanwhile once again, without notice, my Medicare Part B was dropped in September without an adequate explanation except to be told there was a systems error. This of course prompted BCBS to drop me from their plan which is standard procedure, leaving me with no medical coverage at all. I had no notification except from my local CVS pharmacist who called to notify me that one of my refills did not go through because my insurance was denied and then a voice mail from SSA saying "you no longer have Part B, I don't know why, and don't know what to do about it." I was unable to connect with my case worker at SSA however I was able to speak with the congressional aid at Congressman's Olver's office who started to follow through on the issue for me.



Meanwhile I was dealing with an exacerbation of my Sjogren's syndrome which required an increase in medications and more lab work, an orthopedic appointment of a six month old sprained ankle that had gone bad, and an MRI. I started physical therapy for said ankle and then had to stop as I had no insurance and was worried the issue won't get straightened out as by this point I didn't understand what the issue was or what was going to happen next.



I have learned to handle stress very well. I have to with an autoimmune illness because stress just makes my symptoms worse. But not having health insurance puts me in sheer panic mode and I had my first panic attack in years. I became afraid to answer the phone or check the mailbox because it was always bad news that just made my situation worse and more frustrating. My days became filled with dealing with emails, phone calls, documenting every single thing said or done, working with health care providers and the pharmacy; the list goes on and on.



After several straight days of dealing with this, yesterday I heard back from the Congressman's office who told me she got me reinstated in Medicare Part B but being the skeptic I am, I knew I would not feel sure about this until I called BCBS the next day to get reinstated with them because they would check the system and I would know for sure I was all set.



So today I called and sure enough, according to the system, I did not have Part B and could not get my BCBS back. I told the rep how I had to borrow money to pay for my medications yesterday and had to cancel appointments which was concerning since I just found out that my MRI showed a torn tendon in my right ankle. Also I had missed an important eye doctor appointment today. She promised me that she would flag my file and watch the system for my name to come through as maybe I went into the system late yesterday at SSA and might come through tomorrow morning. I knew better though. It wasn't going to be that simple.



So I hung up and just cried. I asked God why can't the people in charge just make this right so I can get the care I need and so I can not feel so riddled with anxiety to the point where I feel like I am on the verge of panic? Don't they realize because of my health issues how vulnerable I am? I have utilized every resource I have. I prayed for the strength to just keep going.



And then the phone rang. I hesitated to pick it up because well, it's always bad news lately. It was a woman named Judy from BCB. She told me that effective today I will be fully reinstated onto my BCBS plan. I told her that I had just spoken to someone from BCBS who said I wasn't in the Medicare Part B system yet so that couldn't be done. This woman said that yes, that is true what the previous woman said and that that same woman had then contacted her and that the priority to them is that I receive the medical care I need. And apparently she was the one that was going to make that happen.



I started to cry, a lot.
Because I had health insurance again.
Because I could get the care that I needed.
Because someone cared enough to go to the edge for me.
I was no longer just a number.
I was a human being.


She said my coverage will be retroactive to July 1st (as it should be) and she will check to make sure that none of my recent claims will be denied. She said she needs twenty-four hours to get my prescription coverage in place but to bring all my scripts, including ones I paid for out of pocket so far, to CVS and they will be covered effective tomorrow. She said to make sure I attend my physical therapy appointment tomorrow and to be assured that I now have medical insurance. She will deal with the rest. She was my angel.


This is what happens when God is listening and when you are fortunate enough to find your way to the compassionate people who work in the health insurance industry. Thank you Judy.






Addendum: I called Blue Cross/Blue Shield again today September 21st to reconfirm that I still have an active policy because well, it just seemed all a little too good to be true. And yes, I still have coverage. So today I am off to get a prescription and another much needed physical therapy session. God is good.





























































































































































Photo Courtesy of Google Images

Monday, September 10, 2012

What I Have Come To Understand




In the two and a half years I have been writing this blog, I don't think I have ever written a post about a doctor's appointment with my rheumatologist. The appointments tend to be pretty significant since the rheumatologist treats the Sjogren's syndrome. I am sure that I have mentioned events that have happened at certain appointments, but I think that has been the extent of it. I think the reason for this is because I don't think people will be interested or that the post may be boring. Today I realized that I may have made a mistake. Sharing information from these appointments with my rheumatologist not only may help someone else, but it also gives other people the opportunity to give me feedback about their experiences with different treatments, side effects, and complications from medications.



I have had more severe symptoms than usual lately with some new ones thrown in for fun. Therefore I have been seeing my rheumatologist, Dr. P, more often than usual. These appointments tend to be  stressful for me compared to those with other doctors. Sjogren's syndrome, like many other autoimmune diseases, often presents with a myriad of symptoms and often it is like trying to fit together the pieces of a puzzle. Is this symptom autoimmune related? Is it a side effect from a medication? There is the unpredictability of not knowing what the next step may be in treating the illness. Then there is also the fact that Dr. P's office is an hour away from home, she is usually running behind (I have attributed this to the fact that she does not rush through her visits), and sometimes there is lab work to be done after the visit. From the time I leave my home to the time I pull back in the driveway, I am looking at a five hour trip. Exhausting.



I have  been more frustrated than usual with her, myself, and the whole Sjogren's situation in general. I had just recovered from the whole Guillain-Barre/blood clots in the lungs fiasco when I began to develop severe, debilitating migraines thought to possibly be autoimmune related. After struggling to find a medication at a dose I could tolerate to manage these migraines, some of my Sjogren's symptoms decided to come out and play; most likely because I had weaned off my steroids. Severe fatigue and joint pain worse than I have had in at least a year were the highlights. In addition to that, I have been having some significant urinary issues that come and go and that has prompted some further testing; the cause thought to possibly be autoimmune or medication related.



What this has meant is that Dr. P and I have been continuously trying to figure out a course of treatment to manage my illness. A course of treatment for an illness that has no cure and really no acceptable or standard form of treatment. If you have diabetes, you change your lifestyle, check your blood sugars, and take insulin. The end result is that most of the time, your illness can be controlled. Not the case with Sjogren's, or many other autoimmune illnesses for that matter.



And there are only so many medications to try. Appointment after appointment Dr. P and I discuss the options and what may come next in regards to medications. She keeps wanting to put me on or increase my dose of prednisone. This gets me pretty worked up to say the least. If you have spent any time reading my blog, you will understand how much I hate prednisone. Here's the thing though: as Dr. P said today, I am between a rock and a hard place and it is a matter of choosing the lesser of all evils. I have already been on many of the other autoimmune medications such as methotrexate, Imuran, Cellcept, and Enbrel. Cellcept did help quite a bit but made me so sick that my previous doctor had no choice but to take me off of it. Enbrel helped a little but not enough to justify the chronic sinus infections it was causing me to have.



As we discussed today, there are some other options to consider such as the medications Arava and Rituximab. But they are not without their risks as well. It is hard to make decisions, I am sure for her as well as for me, about which risks to take. Do we consider Imuran again and take the risk of liver damage and other complications or continue trying the steroids at different doses and see what side effects I can live with and risk long term complications such as diabetes, cataracts, and stroke? As much as I hate the prednisone, there is no doubt, it works for most of my symptoms. The problem is that I need a lot of it and the more I take, the worse the side effects are and the higher the risk of severe long term complications.



So our plan for now is to double up my prednisone dose to 15 mg for a few days and then slowly wean it down to 10 mg rather than the 7.5 mg I am currently on. We did this about two weeks ago when the pain and swelling got bad enough to interfere with my daily functioning and it worked but once I got back to 7.5 mg for a few days, the symptoms started up again. So this time we will only wean down to 10 mg. We agreed that 10 mg is the maximum dose of prednisone that is comfortable for me long term. Well, for Dr. P anyways. 0 mg is the maximum dose I am comfortable with but the reality is that my options are getting fewer and fewer and I cannot risk further Sjogren's complications or live in this state of health.



What I came to understand from my appointment today is that there are no easy answers. Not even easy answers, but any concrete answers.


There is no medication in this world right now that is going to fix me without making me sick in some other way. Maybe someday there will be. But not today.


I am also starting to understand that I don't think my body is ever going to go back to the point it was at before December 2008, which is when Sjogren's started to truly ravage my body.


This does not mean that I still cannot do what I am doing; exercising, eating healthier, reducing stress. I will keep trying to control my symptoms through diet and exercise. I will live a healthy lifestyle. I will meditate. I will work with my doctors and stick with my treatment plan. I will laugh and I will play. But I guess for now at least, I am not going to place any of my hopes on any one medication to be the answer for restoring my body to the state that it was once in. Rather, I will continue to work with the body that God has given me in this moment and in this day to live in the best possible way that I can.















































































































































































































Photo Courtesy of Google Images

Friday, September 7, 2012

Partners In A Healthy Lifestyle


The very first time I ever noticed my fiance, I was sitting in my usual pew at church. He was walking down the opposite aisle of the church to sit in his own pew by himself. He had a certain presence about him. Maybe it was his long trench coat that hung on his 6'2" frame or his stylish cowboy hat. Maybe it was his unassuming presence or the gentle way he looked at people when they were talking to him.


The very first time I knew, although I was in denial about it for months, that I was very attracted to my fiance, he was kneeling by my side after church, offering to lend me some of his movie collection as I was trying to recuperate from a very difficult hospitalization. I subsequently fell in love with him for a million and one reasons. Attraction was a part of that love. I was attracted to him on an emotional, mental and of course, physical level. In my eyes, I never saw him physically as anything less than perfect.


So because of this, it came as a surprise to me when last year he mentioned to me that he had lost weight since we started dating in September 2010, that this weight loss was intentional, and that he wanted to lose more. He told me how much he weighed when we started dating and again, I was surprised. I had never thought of him as overweight and to me he had been perfect just as he was when we started dating. I guess that is what happens when the pheromones are in charge! I found him attractive on all levels and his weight was irrelevant to me.


Ignorantly thinking that men are not as concerned about self image as woman are, I didn't think much of it and 2012 came upon us. I drastically changed my nutrition plan, eliminating gluten and dairy (to help control my autoimmune symptoms) from my diet which meant that at dinnertime, Chuck did too. After my Guillain-Barre fiasco in February, I got more serious about my health. I started exercising regularly and fine tuned my nutrition plan; eating healthier than I had in my entire life. Because Chuck and I are together most evenings and weekends, my healthier eating affected him as well. It was important to him that I be as healthy as possible and do whatever I needed to do to try and manage my autoimmune illness and although I offered, he never considered the possibility of making two separate meals when we ate together.


And as the months have gone by, I have noticed the changes that he has made one by one. Getting to the gym more often. Eating smaller portions at meals. It has been interesting to watch because he is not dieting, but rather just making lifestyle changes, one at a time. It has been great because to be honest, it has made my lifestyle changes a LOT easier when there are not always so many tempting foods in the house and when your partner doesn't want to eat out all the time. That is not to say that we don't treat ourselves or indulge from time to time but when we do, it is without reservation or guilt.


He has become my biggest fan and cheerleader in my quest to become healthier and lose weight. For the first time in my life, I have a partner that supports my mission. It is also the first time I have been in a relationship where I am losing weight rather than gaining weight. And he has never ever complained. Not once. He eats every single gluten-free, dairy-free, vegetarian, sugar-free, cardboard tasting recipe I have ever tried. Together we figure out which ones we both like more than others and then I experiment some more so we are eating food that we truly enjoy. When he cooks on the weekends, he cooks gluten and dairy-free. He makes sure the ingredients are measured so that I can then calculate the Weight Watchers points as I do the Weight Watchers program in addition to my gluten and dairy-free lifestyle.


I have come to realize that we have become quite a team. We each have our own strengths and weaknesses when it comes to nutrition and exercise. He is better at staying away from take out and fast food. I am better at making sure we have vegetables with our meals. He is better at the fitness aspect of things and has been good in helping me construct an exercise plan that is doable with my illness. I am better at meal planning and keeping the kitchen stocked.


I have blogged about and been very open about my health and weight loss journey but here's the thing. It is not my journey. It is OUR journey.


That man that I was so attracted to two years ago? I realized when I looked at him about two weeks ago that he is NOT the same man. Not physically. I was so wrapped up in my own journey that although I knew he was losing weight and I could wrap my arms around him a lot easier, I was not fully aware of his amazing transformation.


I saw him getting dressed that morning and just exclaimed "Oh my God!"

I exclaimed a lot of other things but well, this is a public blog so we will leave it at that.


He had muscle definition in his abdomen, legs, and arms that I had never seen before. The result of exercising five days a week. The result of eating healthier. The result of losing thirty pounds in the two years we have been together.


I have to admit, it gives me a twinge of guilt now and then when I look at him. I am not any more attracted to him than I was before he lost weight but I cannot lie. He looks great. I fully appreciate the changes in his body and I have to wonder if on some level that makes me a bit shallow.


But then I stop and think about how concerned I was about his elevated blood pressure at his doctor visit last year before he lost weight.


I stop and think about how maybe this weight loss might prolong his life and therefore our time together.

I stop and think about how happy he is with himself and how proud I am of his accomplishment.

And I realize that those are the things I am really appreciating.



August 2012