For Everything There is a Season

"In order to write about life, first you must live it." ~ Ernest Hemingway

Category: determination (Page 2 of 2)

Medicare, Blue Cross/Blue Shield, and Me

September 21, 2012 / / 5 Comments



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

Trusting My Body Again

April 12, 2012 / / 12 Comments

“Movement is a medicine for creating change in a person’s physical, emotional, and mental states”. ~ Carol Welch

It is two o’clock in the morning and I have to go to the bathroom. I try to get out of the bed and realize that I cannot physically get my body to sit up. I am too weak and don’t have the strength to even get myself to the edge of the bed. I wake up my fiance, who was probably half awake anyways, so he can help me get out of the bed just to use the bathroom. I am frustrated and scared.

Three months go by.

It is eight o’clock in the morning and I am staring down a very large machine called a cross trainer. Seems like the biggest bang for my buck as it will give me a good cardiovascular work out with minimal impact on the already painful parts of my body. I expect to last three minutes on it. I start and my legs and arms just keep going and going. I am on it for twenty-five minutes. I am exhilarated.

I have won.

I found out three months ago that in addition to having Sjogren’s syndrome, I was afflicted with a neurological disorder called Guillain-Barre, which was causing severe body weakness, difficulty walking, and severe pain to the point that I wished I was dead. Even the simplest of tasks was difficult. Guillain-Barre arrives like a freight train, does its damage, and leaves. I was extremely lucky that I had a milder version of it and was started on steroids relatively quickly which may have lessened the blow of the illness. I was never completely paralyzed and did not end up on a ventilator like some people do. I still count my blessings every day about that.

I have been working my tail off ever since January to get better. I already had several strikes against me due to the Sjogren’s syndrome and the Guillain-Barre, along with some blood clots in my lungs; all of which presented more obstacles in my recovery than I knew what to do with. Physical therapy was, and sometimes still is, brutal and exhausting. In addition to all the previously mentioned diagnoses, I was also diagnosed with occipital neuralgia in February. This has resulted in severe head pain and headaches. Yet another obstacle. Or an excuse, depending on how you want to look at it.

But even on my worse days, I stuck with the physical therapy and as the weeks progressed, I started to notice a significant improvement in my strength. I no longer fell over when I crouched down to get a pot or pan out of the lower kitchen cabinet. I could lift a plant above my head again. Taking a shower was a routine task again although I must admit, I don’t take my ability to do that for granted anymore. Come to think of it, I don’t take my ability to do anything physical for granted anymore.

My most recent goal in physical therapy, besides getting the occipital neuralgia under control, was to get back into the gym. I was exercising in one way or another before this whole fiasco began in January which to be honest, is no small feat because of the Sjogren’s syndrome. I am frequently plagued by joint pain, muscle pain, neurological pain, breathing difficulties, and the list goes on and on. Some days I would go to the gym and some days I would take a walk with my dog. I was usually not exercising to the point of winning any marathons, but I have found that pushing myself to get physical activity whenever possible has been helpful with my Sjogren’s symptoms; provided that I do it within reason. Not to mention all the other excellent health benefits.

I had been going to a Planet Fitness in town and had decided that instead of renewing my membership there, I was going to try a different gym that had a pool. My reason for this was that my Sjogren’s issues were occurring more frequently and if I had access to a pool, I may be able to get exercise in the pool on days that I would typically be too sick to exercise. It would be less impact on my joints. Problem was, I was hit with the Guillain-Barre before I had the chance to join this new gym. I was recently cleared by my physical therapist to get back to the gym. Unfortunately I had a fall three weeks ago and still have an open wound which will keep me out of the pool right now, but there were so many other things I could do at the gym besides swim.

If I could just get the courage to go.

Here’s the thing: I was scared. I felt comfortable at my old gym. It was simple and familiar. There has been so much upheaval in my life over the past few months with my health and I find that I am not quite as open to change and new surroundings as I was once. I feel more vulnerable. I feel the need to protect myself. I have always been self conscious about how I look and gyms have always been intimidating to me; especially one like this that is not simply laid out and where I do not know anyone. All of a sudden I felt very insecure about this new place with its different machines, new classes, and unfamiliar rules. It was my insecurity at its finest you could say.

Today was the day to just do it. I was hesitant at first because I was having more joint and muscle pain than in past weeks and my head was acting up after the physical therapist worked on it extensively yesterday. But I had previously chosen today to start going because except for some blood work, I had no doctor appointments or other pressing commitments that I could not get out of if I had to. So if I was down for the count afterwards, so be it!

No excuses.

And guess what?

I loved it.

When I got to the gym this morning, I asked about signing up for their free two session orientation and the staff person that was working the desk, Tom, talked to me about what I specifically wanted help with. This of course led to a conversation about my physical therapy, why I was doing it, my diagnosis etc. He immediately put me at ease and gave me a lot of various ideas about different work outs, especially in regards to classes and the pool. All of a sudden, I didn’t feel so overwhelmed. I felt like this was doable. I felt more secure.

I decided that today I was going to do my physical therapy exercises at the gym instead of at home and get an aerobic workout as well. I spotted the cross trainer, which is similar to an elliptical but looked more difficult as there was an incline. I liked the fact that it overlooked the pool area where I could observe a water aerobics class while I was working out. Besides some walking with my dog over the past week, I have not had any aerobic activity since maybe around Christmas and I anticipated that I would be starting from square one again. I jokingly told Tom that if I lasted three minutes without keeling over, that would be sufficient and I would move on to a bike or a treadmill, both of which had a lesser chance of making me pass out. We figured out, based on my age and recent physical issues, that my maximum heart rate should be around 140.

I don’t know what the deal was, but I was on that thing for twenty-five minutes. Granted the machine was at the easiest incline and resistance, but who cares?? Maybe it was all those physical therapy sessions or hours and hours of doing exercises in my living room. Maybe three months on a new eating plan has helped. Who knows. I was surprised at how much endurance I had and how well I did cardiovascular wise. Not that it was easy, but I got through the twenty-five minutes unscathed. After so many long months of being in bed or on the couch, it felt so good to be sweating and to be able feel my heart pumping so fast again.

It felt good to be out of the house.

To be having fun.

To be able to out one foot in front of the another.

To trust my body not to fall apart.

I know that this morning’s work out will probably wipe me out this evening and maybe even the next several days to come. There will be Motrin involved, maybe some stronger pain medication if I am desperate. Hot packs will once again be my new best friend. I also know that due to the Sjogren’s syndrome, exercising of any type will always be a constant battle for me; probably one that I will have to deal with every single day of my life. But for today, I feel like I can say that I have conquered yet one more obstacle on my path to wellness and healing.

And you know what?

It feels pretty amazing.

Photos Courtesy of Google Images

Boring Details Medical Update

March 1, 2012 / / 11 Comments

“If you don’t like something, change it. If you can’t change it, change your attitude.” ~ Maya Angelou

I wear two pieces of jewelry these days; my engagement ring and this silver cross that Chuck gave me a month after we started dating. I had to take it off for my MRI yesterday and I gave it to him to hold. He took this photo in front of a snowy window in the MRI waiting room. Is it no wonder why I love him so?

I am a firm believer that the only way through hard times, pain, and suffering is through it. Not around it. So when this week approached with its nine plus appointments, multiple medical tests, and constant hourly changes in my schedule, medications, and therapy, I made a firm decision that I was just going through it. I knew it was not going to be easy, but my approach was one hour, maybe even one minute, at a time.

So far it has been an insanely busy week. It is a huge struggle when you feel like hell physically to get yourself showered, dressed, and prepared for one appointment after another; meanwhile trying to keep track of your other responsibilities such as who’s going to care for your dog, how you’re going to get places, getting the times right, eating, resting, etc. Throw in a few inches of snow for a messy commute and well, you get the idea….

So here’s the deal. I started physical therapy on Monday and will be going twice a week for a few weeks at least to start with. I was disappointed because my therapist was pretty focused on my lower extremities which at this point, are not the biggest problem; my upper extremities are. I am not 100% confident in his experience but that could be because he looks like he is fifteen to me. I will try and reserve my judgement until after another session or two and then if I feel he is not the right therapist for me, I will request someone else. The evaluation itself exhausted me and I am not sorry that I cancelled for today. I have exercises for home meanwhile.

My blood clotting labs are down (they should be higher) probably due to being back to eating green veggies again like I normally do. So they upped my blood thinner dose but now I am on a regular eating routine so hopefully this will straighten out at my next blood draw. At least no more injections. I still cannot wash my belly without discomfort because of the nasty large bruises. I am wearing my own pants now though. Elastic waistbands only but at least they are not Chuck’s!

My appointment with my pulmonologist was almost a three hour ordeal on Tuesday as I had to have breathing tests done and then he got called into an emergency procedure so he was an hour and a half behind. I think I handled that very well to be honest. I know that he also runs the intensive care unit at the local hospital and despite his best scheduling, sometimes these things happen. It is a small price to pay for seeing such a fantastic doctor. He truly looked stunned when I explained all the things that had happened since my last appointment. It was kind of funny to see a professional’s reaction to all of the recent events.

Because of all the steroids I have had, I rocked my breathing tests. Like textbook perfect, despite the blood clots in my lungs. While I am still on the steroids, I get to come off one of my inhalers, at least for now. Yay me! We reviewed the CT scan and I got to see my little blood clots live and up close. It was a touching moment.

OK, not really.

He thinks because I had another blood clot in my leg years ago, it does not look good for me getting off the blood thinners (Coumadin) in this lifetime but we will let one of my newest specialists (the hematologist) decide that when I see him next month.

The concern now is that despite my asking about this in the hospital, there was not an ultrasound performed of both my legs to see if I am regularly throwing blood clots or if this was just related to being immobile from the Guillain-Barre plus having a clotting disorder plus the possibility of the Sjogren’s playing a role. So we are doing that this Friday. I asked him if we really wanted to go looking for more trouble. He laughed and thought I was joking. I was not. But I know its important so off I went to acupuncture for the first time in a bit to see if it would help with my stress but unfortunately, a phone call from my long term disability company an hour after I got home from acupuncture pretty much negated any positive effects I may have had from that session.

Yesterday found Chuck and I in Hartford with my neurologist. It started off pretty bad because I had been so sick with these awful headaches in the back of my head; the ones which landed me in the ER last Friday. The drive down made me nauseous and I was having more weakness in my legs and arms as I was so sleep deprived. Apparently Guillain-Barre symptoms can wax and wane for a while, especially if you are sleep deprived. Neuro doc did an EMG which is not a day at the park but tolerable. I’ll spare too many of the details. After a series of nerve conduction shocks and a round of sticking needles in my muscle which lasted about a half hour or so, she said the test looked normal. What this means is that it did not show any permanent damage that she could find but I do have (had) Guillain-Barre. A positive test result would have been helpful for her to see more what is going on but a negative one doesn’t disprove anything; if that makes sense. I say any day you have a negative test is fine by me.

Had an MRI of my cervical spine that afternoon which the hospital graciously moved up from late afternoon due to the inclimate weather and us being over an hour from home. That was the test I was least worried about from a pain standpoint and it was awful. Because I have been having neck tremors, they were having a hard time getting still pictures and told me I couldn’t swallow or deep breath while the scanner was going. The test took an hour with minimal breaks. Ugh. I do deep breathing to help manage my claustrophobia in the MRI machine which then I couldn’t do but I have to say I did pretty good. Until about ten minutes or so before the test ended. I had been laying perfectly still on my back, on a head that was killing me in the back, and the pain was more than I could bear. I just let the tears come without moving my damn neck; but it was pretty painful.

Luckily, the neurologist and I had discussed these sudden headaches and she put me on a pain medicine that is specifically for headaches and shouldn’t keep me wide awake all night like the one I was taking. I had it filled at the hospital pharmacy so was able to take a dose right after the MRI before Chuck drove us home. She is not sure what is causing these headaches. I have had some in the past with Sjogren’s flare ups but very different from this. The concern is the neck and arm tremors that I am still having which are better but still there. Although she think the tremors may be Guillan-Barre related, she does not think the headaches are. It may be as simple as stressed induced migraine or tension headaches which I guess can be pretty bad. They did start right after I found out about the blood clot and Guillain-Barre diagnoses so who knows. She also thinks the lack of sleep for the past two months while being on steroids could be a trigger as well. The plan is to get MRI results to me by tomorrow at the latest and see if this new headache medicine is helping which so far, it has helped quite a bit. It also knocks me on my ass. No complaints there; slept four straight hours last night. That was a miracle.

Unfortunately, the neurologist also feels that I should have that last steroid infusion because of all the neurological issues I have had so we wandered over to my rheumatologist’s office and left a message about setting that up and I am expecting to hear about that today or tomorrow as well. And I got a follow up appointment with my rheumatologist finally which is no small feat whatsoever. So much to think about. So many more appointments.

So that’s the scoop so far. I still shake like a leaf sometimes, have nasty headaches, and am exhausted all the time. Today my body is just yelling “enough” and since I cancelled PT, I think I am going to just keep things as low key as possible and do some more healing. My body still feels so broken. Maybe some cooking. Definitely some snuggling with the pooch. And plan my next round of appointments for next week.

I have been really blessed this week with people helping us out with a few meals, checking in on me, giving me a ride when I need it (although I can get to Noho by myself now!), and especially in regards to watching Molly and getting her some exercise. Trust me, you never know how much those little things can add up and make crap like this so much easier. I have also been able to stay on my eating plan despite this crazy schedule and stress and not only am I proud of myself, but of the people who have supported me in that endeavor. I will be a much healthier person because of it, one way or another…someday!

Speaking of someday, don’t worry…we haven’t forgotten that we DID get engaged and that there will be a wedding. You just never know what kind of plans get made in waiting rooms….   😉

Giving Up and Finding Peace

January 14, 2012 / / 9 Comments
“Anything in life that we don’t accept will simply make trouble for us until we make peace with it.” ~ Shakti Gawain

My fiancee and I were watching a movie in bed last night, Not because we were having this big romantic lustful evening, but because our bed was the only place I could get remotely comfortable after a nightmarish week of autoimmune related health issues, including severe pain. After the movie finished, I turned to him and asked him if he ever just felt like giving up. The question came out of my mouth so fast that at that moment, I realized how strongly I felt about wanting to give up. I didn’t mean giving up as in ending my life, but I meant giving up in the sense of not fighting so hard to try and be well. I wanted to give up all the doctor’s appointment, medications, advocating for myself, all of it. Most importantly I wanted to give up trying to maintain this positive attitude of “life is great, I am so grateful” crap.

Because reality is, sometimes it is crap. I have always tried to adopt this attitude of “fake it till you make it” because I honestly do believe that it works. The power of positive thinking is a strong one and thoughts do dictate emotions. If I am feeling down and out, I act like everything is better than it is; not because I am in denial but because positivity perpetuates wellness. The problem is that sometimes it does not give you the opportunity to truly acknowledge that sometimes things just suck. You go along through a chronic health situation and all of a sudden, the wall of illness seems insurmontable; the odds too difficult to beat. I think that as patients, and as human beings, we need to stop and be true to ourselves in acknowledging the reality of a lousy situation.

But maybe it is not about beating the odds and maybe it is about finding new ways to go around and over the wall of illness rather than trying to get through it. It is becoming quite apparent to me that over the past six months or so, the course of my Sjogren’s Syndrome has become more severe. Rather than being stable for a few weeks or months at a time, I am constantly dealing with one issue or symptom exacerbation after another. I cannot do everything I was capable of doing six or nine months ago. My ability to socialize on a regular basis or take any kind of trip has diminished significantly. Even the daily activities, such as housework and errands, that I could do more readily have been impacted.

So where has this left me?

It has left me really ticked off…and frustrated…and discouraged.

As this week has progressed and I have found out that my most recent pain and walking crisis may be due to Sjogren’s related nerve damage, I have come to the realization that I am constantly attempting to go through the wall rather than around it or over it. My motivation in trying to get myself better is to try and physically be the person I was before I got sick so that I can go back to work as a nurse and do all the social and physically active things that I used to be able to do. The problem with this is that I have this illness that does not allow for that. I can sit here banging my head against the wall and say I am going to be strong and determined. I WILL overcome and beat this disease. But all this does is leave me working for something that may be impossible to attain while at the same time losing sight of what I DO have. And I have a lot.

And the worst part of all this is….

I have no peace.

The nerve pain has ravaged my body leaving me sleep deprived, cranky, and overwhelmed recently. The worry and stress over how poorly my body has been functioning and the implications of yet another system involved in my illness has eaten away at me.

I have no peace.

I am so busy trying to be strong and determined in an effort to defeat the Sjogren’s beast that I have let it rob me of my peace. This in turn makes me quesion everything else about myself; my ability to follow through on social commitments, my ability to persist with my Sjogren’s book project, my ability to be the kind of partner that my fiancee deserves.

So instead of trying to go through the wall and get back the body I once had, I think it is time to find a way around the wall and develop ways to effectively cope with the body I have now. Maybe this is what I meant by saying I wanted to give up. I want to stop fighting and resisting. Rather, I want to accept the reality of where I am and the implications of my diagnosis while at the same time, continue to learn and utilize different healing treatments to restore and maintain as much of my functioning as my body will allow. I want to attempt to find ways to cope so that my pain and other symptoms do not dictate where I am mentally or spiritually as a person

And if I can accomplish this maybe, just maybe,

I will have peace.

Photo Courtesy of Chuck Myers

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