Health Insurance Woes and My Fix



Before I begin I need to put a disclaimer on this post…

*I am not a doctor. I do not possess a degree. I am a lupus patient. Any and all information I am sharing in this post is for me only. I am the one who decided to do something about it. I am the one who implemented the plan. You should not do the same unless you have thoroughly discussed this with your doctor(s). I discussed it with my doctors and this is the plan for me. As you know, each lupus patient is different and we all have different plans of care. Do not do what I am doing without medical discussions with your own physicians. What works for one person might not work for another.  I am not responsible for any injury to you for you doing what I have done. For this reason, I refuse to share what specific things I am doing in alternative medications.*

As  the title implies, I am writing about my experience with the new insurance climate that has changed how my insurance operates now. I moved to Kentucky three years ago. I had to change my insurance because I moved from Ohio to Kentucky. To facilitate the changeover, I stayed with the company I had in Ohio, and just moved the policy to one I could use here in Kentucky. Sounds simple doesn’t it?

The fact is that it took me the better part of an entire day to change the policy. Seriously. I also found out that not only would I be paying the premium as in Ohio, based on the medicare payment, but that in Kentucky, I would have to pay another $60 per month as well. What??

Here is how and why I was told I had to pay that extra $60 per month on top of the $120 medicare premium…in Kentucky, you have a lot of different providers serving different healthcare chains. In Ohio, I stayed in the Kettering Healthcare Network with all of my doctors. They were all covered and I was happy. In Kentucky, my pcp is in the Mercy Health Network which is ironically out of Cincinnati. My local hospital, a small thirty bed facility with an ER, is out of the same Mercy Health Network. My eye doctor is out of UK Healthcare Network. My rheumy is out of Baptist Health Network, my cardiologist is from Kentucky One Health Network, and my husband has been in the St. Joseph Network system seeing his specialist. Here, not only do you drive an hour and a half one way to see a doctor at times, but you also are required to cross networks to see the right doctors for you. Hence the higher premiums.

Now, for those who are lucky enough to have several overlapping diseases, it becomes even worse. As of January first, this year, my premiums again went up, thanks to the lag of the higher priced Obamacare. I now pay over $200 a month just for my premiums alone! Oh, I am on disability and was one of the supposed low income people that it was purported this new scheme would help. Oh yeah? It has certainly helped me all right…it helped me have less money to live on is what it helped me to do!

This is not the only way it “helped” me either. I went to get my prescriptions just as I always have. When I got them, it was not at the usual $2-4 each as before January first. One of my prescriptions went from $4 to $75 a month! Only one stayed the same. One! As anyone with lupus knows, we can be on a few drugs or many, depending on the disease and all. I paid that month but made a drastic decision at the same time. More on that later. I also found out that the place I had been getting my prescriptions, a retail chain, was not on my insurance plan anymore. I live in a rural county in Kentucky. The nearest retail chain that is covered, is 35 miles away. In my town there is only the one retail pharmacy. So, so far, I am paying more premiums, and now prescriptions were cost prohibitive plus I have to drive 35 miles to get to the nearest pharmacy that is covered. What else could go wrong? Surely a low income person like me could try to keep this up right?

Wrong! I had eye surgery in January. It went well. All better. However, when the bill came in I was in for another shock. You see, I now have deductibles. I have not had deductibles since going on disability. Imagine my surprise when I discovered that I have to pay 10% of my bill! My surgery was $10k so do the math folks. Yep, now I am paying a deductible. Wonderful. Just wonderful.

So far, this affordable health care act has priced me out of eating, rent, medications and all other costs of daily living! But wait, I did get a cost of living increase finally this year after 7 years of none. That will help, right? Hm, where do I spend that $20 a month? I got a big fat $20 increase in my benefits…so that should cover those pesky extra expenses right?

Sarcasm much? I find that now half of my gross income is going out each month towards my healthcare costs. I think I have found how it will save money though. I think it will save money because the very people it was supposed to help will be dying off because they cannot afford to live anymore. The only people it really helps are the politicians, lobbyists, and CEO’s of insurance companies who are all getting huge kickbacks and salaries. Those are the ones benefiting from it. Not me.

So, before you can say I should go apply for help, I did. I found out that, believe it or not, my husband (who is also on disability for something completely different) and I make $50 too much in gross benefits and thus do not qualify. It does not matter that we are paying out the wazoo for all this stuff. Nope. Income is what it goes by we were told. Now, if we should separate and live apart we would both qualify for help. We are honest people though and while many might play the game the system forces you into, we will not.

So to recap, this low income disability person has to pay half of my gross income for the privilege of paying even more money out for goods and services previously covered for a lot less.

Now on to what I have done about it. Here was the scary part. I researched all of my meds in more detail to find what specifically they were doing for me. I then looked for corresponding natural things that could do the same. At this juncture, let me state that while I did this for me, it may not be good for you and you should discuss all treatments in detail with your doctors. I am not a doctor. I am a lupus patient who was at the end of my rope here. I took decisive action for myself.

I found interesting things in the process. I found that indeed there were several natural alternatives out there and for the most expensive meds no less. I then made an appointment with my doctor and discussed these with her. I explained the situation. My doctor, who used to be a nurse, is very much on board. After we looked over the alternatives, we decided to try it.

What can I say? The alternative treatments are working and I actually have tons more energy than before. My mood is more stabilized, and I feel alive again. I still live with pain but the pain is more bearable now. I will not disclose what I am taking because as stated before, I am not a doctor. I can honestly say that it is working for me though. A month after started the alternatives, I ran out of one and truthfully thought it had not been working well for me so I did not get more. However, a few days later, I was in pain, bad pain. I got more of the alternative stuff and the pain went away! I am a believer now!

I do want to add that the things I now take are available anywhere. I will not endorse any product here. I am not selling miracles. Honestly, the only major differences I have found is that I have more energy and I feel things again. What I mean is that instead of being in a cloud of medications making me groggy and sloth like, I now can enjoy my life again. I still have the same limitations I had before. I still have lupus. I still have bad days. However, the good days seem to be more now.

I am also aware of a “placebo effect” and what it is. I do not feel like this is the case here because I seriously did not think the new things were helping until I did not take them. I tested them. I also did not abruptly come off my other meds. As I started a new thing, I would wean off my meds. Slowly. All of this was under my doctors care.

I just wanted to share my experience because I have a feeling this new insurance scheme might be affecting your lives as well. I know mine has changed but thanks to an understanding and knowledgeable doctor not afraid to jump in and experiment, and my willingness to try some new things, I find life so much more livable. Just my experience.

Do not lose hope. We are in this together. Research, ask questions and most importantly, pray for help. I now spend a lot less on meds and supplements. I feel better. I am alive. I am happier.

I hope you are all having a wonderful summer! I hope to get back to posting again more often. So much is going on here…good things! Until next time, stay as healthy as you can and enjoy each day you have!


Insurancegate aka “new government healthcare”


The title says it all. I have been entered into the insurancegate program, also known as obamacare. My insurance company didn’t call it obamacare, but instead used the terms “new government regulations” “new guidelines” “policy adjustments to meet new guidelines” and well, you get the idea. What am I talking about? Let me start from the beginning.

I was opening my mail yesterday to find a letter from my insurance company, United Health Care through AARP. I am naming them out. I feel though this could apply to other policies and companies as well.

This letter was to inform me that as of January 1,2014, the following doctors were not part of my plan and I would need to see new doctors. Which doctors you ask? Oh nothing much, just my rheumatologist I have seen for ten years and the gastroenterologist I have seen for a year that found my precancerous polyp and I am to keep following up with. No biggie!! WRONG!!!!!!

As any lupus and/or autoimmune patient knows, finding a good doctor is of utmost importance in our disease journey. I had found my doctor. Shoot, in the last year I have recommended him to five others who also love him!! He is not just a good doctor, he is awesome!!! He is what most of us dream of finding in a doctor who is extremely knowledgable in autoimmune diseases! Not to mention, he is also the ONLY rheumatologist in Dayton, Ohio, where I go for my healthcare.

Now, according to the “statement” I had read to me on the phone, my insurance company tells me I have to change from my current doctor to a new doctor. They claim it is because to meet these new government guidelines they have had to pare down the doctors they will use to a small core of doctors and since my doctor didn’t make the cut, I must go elsewhere. Say what?

To further complicate matters, a friend of mine who sees the doctor I have been referred to (the replacement doctor) and who has the same insurance, has been told she has to change doctors because HER doctor isn’t covered for the same reasons. Um, what? Basically we both have to change doctors but HER doctor is MY NEW doctor while HER doctor is not on HER plan now. Clear as mud?

This has got to be the craziest scheme in the world. I’m just venting here but truth is I was told there is NOTHING I can do about it. No appeals, no overrides. Just like it or lump it. Crazy!!!

My point in this story is to you all: check and double check your own policies. Don’t get “stuck” in a catch 22. I assume many more letters will be going out. I may yet get more myself. Just be aware and be prepared. It felt like my whole world got flipped yesterday. It did. It’s nuts!!!

Lupus and Disability


Many people who are diagnosed with lupus are still working. Many others are not able to work anymore and have had to apply for disability. This can be both a blessing and a curse. The biggest question many ask is “When do I quit working?” and “Can I get disability if I have to quit working?”

Each lupus patient must make these decisions on their own. Alot depends on whether they are having major issues. For instance, I went on chemo and explained to my employer that it made me sick and weak. I was informed that they were going to work with me. Upon my taking a paid leave of absence because of the weakness and sickness that chemo brings, I was informed, via email no less, that I was terminated. I admit I was bitter and disillusioned but after working for 15 years with lupus, I finally had to realize that this was my wake up call that maybe I needed to retire and take care of me.

To be sure, this decision was not made lightly. My husband was on disability already for some major issues and I was the breadwinner of the family, and I carried insurance as well. To lose my job meant that unless I cobra’d the insurance, we lost our health insurance that we both so desperately needed. Now, I ask you, if you have ever had to cobra your insurance, how expensive was it? Sad to say, ours was too expensive so no insurance.

This road we traveled carried many twists and turns but in the end, I received my disability and got insured again. The road was rough… not an easy one. We lost our house, our cars and all of our savings while waiting to get the disability pay. I had to resort to the United Way for help getting my rx’s. Unless you have ever had to do this, you will not understand just how low you feel and humiliated. I ended up not taking a lot of my meds and actually got worse because of it.

I am not writing this to scare anyone. I am doing it to share so that others can survive the transition without all the drama we went through.

I was my own advocate in this process. No, I am not an attorney, but I did all the leg work myself and compiled it and gave it to SSA. My claim was denied three times and I had to appeal each time. Finally, I went before a judge and he granted my claim. I now consider myself “retired”. I did all of this by myself. In my previous emplyment I had worked for attorneys so I figured I could handle it myself and I did.

This is no easy thing to go through let me tell you. Your self esteem takes a beating from not working. I loved working, and the challenges of it all. I found myself at loose ends, not knowing what to do. However, I have now settled into a fairly decent routine for my days (the ones where I feel good). I do not have guilt for missing work because of my disease. (no job:not worrying about job).

I found out a lot about myself in this process too. I found that I am an intelligent woman. For example, while I was waiting out the process of disability, and on high doses of prednisone, I decided to “pretend” I wanted a little scrapbook store. So, I drafted a business plan, looked up merchandise and wholesale, called the wholesalers for catalogs with pricing, checked out storefronts, etc. You see, it kept my mind busy while my body was not doing so good. I kept my mind focused on something other than my disease. It really did help me get through the rough times.

Disability is no easy road even when you get it. For example, my husband and I receive an amount per month that almost equals what we used to bring home weekly. Our budget shrank, our bills piled up, and we both lost hope of ever seeing the other side. Slowly, we have crawled out from under it all to discover we have many things we can enjoy that do not cost a lot of money and energy.

Now we have insurance again so we can see our doctors without the fear of paying for it. Our prescriptions are covered now and it is another blessing. We have learned to slow down, enjoy life, and enjoy the somple things now. We both were so busy in trying to work and save and do all the things you are supposed to do, that we forgot how to relax. We camp, fish, go to races, play with the grands, garage sales, etc and enjoy doing things we had pushed to the back burner while we were working.

Life has changed for us in so many ways now. We have a smaller home now than the one we had before and we drive a car that we bought with cash. It is a 1994, but it is paid for and if it need repairs, it is still cheaper than the new ones we had. We downsized our possessions and literally threw out a lot of junk we had been carrying around for years.

We moved back to Ohio to help my mother-in-law with her house and did so willing. We get to spend more time with our grandchildren and extended family and friends. While we may not have a nest egg anymore, we are surviving and feel blessed. You see, when we stripped away all the material things we had been striving for, we saw that we were not enjoying them as much as the smaller, simpler things we have now.

As those who read this blog know, many days are not easy for me and as much as I wish I could go back to work I now accept that it will not happen unless I get into remission. This whole experience is like the serenity prayer written by Reinhold Niebuhr. It says the following:

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.

It says it all. In conclusion, disability is a blessing in that when you get sick and cannot work anymore it is a safety net. The process is different for each person. How you deal with it will either make you angry or stronger (I prefer stronger). Instead of moaning about what we lost, we choose to look at what we have and find blessings in each and every day in many ways, big or small. Most importantly, we have our focus on God, who gives us life and knows what we really need to live…1 Timothy 6:7-10 says this:

 7 For we have brought nothing into the world, and neither can we carry anything out. 8 So, having sustenance and covering, we shall be content with these things.

9 However, those who are determined to be rich fall into temptation and a snare and many senseless and hurtful desires, which plunge men into destruction and ruin. 10 For the love of money is a root of all sorts of injurious things, and by reaching out for this love some have been led astray from the faith and have stabbed themselves all over with many pains

Nuff said…