It was the Best of Times…


I have had so much going on around here lately. Most of it is good, with a sprinkling of not so good in the mix. I stated in my last post how much better I am feeling since weaning off most of my medicines and going to supplements and dietary changes. The result so far is really amazing. I feel as close to “normal” as I have in years. I am outdoors gardening most days. I wear my hat and garden in the morning to avoid the worst of the sun and heat. I have a chair to sit in if needed. I am just amazed at how much “earthing” is helping me as well.

Earthing is the term that covers getting dirty, walking barefoot in the grass, and basically just touching the earth. No shoes. Natural. There is even a web page about earthing. I have copied from their page the following:

“Being isolated from the Earth by non-conductive materials such as rubber and plastic (our shoes), wood, plastic, laminate, and asphalt (flooring surfaces).

See what happens when we


When we re-connect with the Earth, balance is restored!

Animated illustration FPOWhen we make direct contact with the surface of the Earth our bodies receive a charge of energy that makes us feel better, fast.”


I didn’t know about this until recently.  I have always been a barefoot type of person. Shoes are confining to me. However, gardening barefoot and weeding, planting and reaping combined have helped me. If you add the supplements into the picture, well, I have felt alive again. For years I have been on so many medications, as you lupus folks know for sure, and up to fourteen at one time. I was taking medications to counteract other medications. It had become like the proverbial hamster running on his wheel. I was getting no better. I was reclusive and stayed home most days.

My paradigm has shifted now, and it started with weaning off my medications, with the exception of two. I use my hands in the dirt, with dirt under my fingernails most days. I walk barefoot while in the garden as long as I am not using a tool which could hurt me. I now have a compost pile. I am learning about gardening techniques. I have harvested quite a bit from my garden and have either given it away, canned it, dehydrated it or used it.

I have canned spaghetti sauce, salsa, pickles, tomato juice, stewed tomatoes, banana peppers, and zucchini pickles. I went to Ohio last week with my car loaded down with jars of stuff for my kids and grandkids. I came home with four empty jars which were consumed by them. My family loves pickles. I dehydrated zucchini chips and then ground them up to make zucchini powder. I harvested cilantro and hung it up to dry. I allowed it to flower to get seeds for next year.

My beans are just starting to come in now so that is next on the agenda. More canning. I know canning is work but my goal is to be as self sufficient as possible and use methods of storage that do not involve refridgeration. I want shelf stable foods that I know are non GMO and grown organically. I truly believe this is helping me as well.

I am learning about fermenting now too. Fermenting foods is a great way to put good bacteria into your gut. I am in the process of learning about this. I also planted my fall garden last week. I planted carrots, green onions and spinach. I have lettuce growing in pots on the front porch.

I think this is all helping me. I am interested in being more healthy. I want to enjoy my life that is left. On the positive side, I am also losing weight. In two months I have lost 6 pounds. I have not tried to lose weight, it just is happening. I will take it!

The things I have done only required time to research, implement and make the necessary changes. I am not saying you all should do this. I am just saying that this stuff has helped me. I feel that your healthcare is just that…YOURS! Do your own research if you want to change. Talk to y our doctor. Be informed. As a postscript to doing this, I saw my doctor on Monday and guess what? She started using one of my supplements after researching it with me. No kidding. She said it is helping her too. I will not say what it is but she was so impressed with her own research that she decided to try it for herself.

I hope you are all enjoying this summer. I sure am and while it remains to be seen, I am hoping to enjoy winter too. Remember, never give up! Keep learning, keep researching and keep living life to the fullest!




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!



Hello once again! I hope this post finds you in good health! I know I am up and down. I called this post Winter? Because here in Eastern Kentucky we have had two or three light dustings of snow and that is it! How weird is that? It has not been cold either! I keep expecting a blizzard because it has been too mild. Now, on to life…

First, big news. I mean really BIG news! I got my eye surgery finally! I went to UK eye clinic and finally I can see!!! I was legally blind in my right eye and had no idea my “good,” left eye was not so good either. So they got my right eye going again and it sure has been great to see again. My cataract developed quickly because of Prednisone. That is what my opthalmologist told me. My left eye also has a cataract, but not the kind that was in my right eye. Thank goodness! I may have it removed soon since it was not a bad experience. I follow up with a retinal specialist soon as well. Since I have been on plaquenil for so long, like 20 years off and on, I have to see the retina specialist to insure that my retinas are not damaged from the long term usage. Who knew?

Next on my plate are my knees. One at a time. I am struggling most days with walking. I bump into walls, fall down and feel very unsteady. My knees, both of them, are prone to giving out at the most inopportune times! However, thank goodness, they only give out one at a time. I am always finding new bruises. This is why the knees are next in line. One issue at a time right now.

As for husband and his alcoholism, he is sober and attending AA every evening. He has a sponsor too, which is a big change this time around. I am hopeful, but also realist, that he can maintain this sobriety. So far so good. One day at a time!

Life is always moving ahead. My oldest grandchild graduated from high school last year and came down and stayed with us for a month. It was a hoot! We had so much fun and we spoiled her pretty good too. She slept in and had her own TV in her room. She loved it! She has three younger sisters, ages 16, 14, and 12 plus a new baby brother who is nine months old. Time alone, in a room of her own, was the thing she needed for a bit. It was great having her here and we looked into the nearby Berea College for the classes she is interested in. She is quite an artist and in different mediums too! I know, I brag but hey, I am granny! That’s my job!

Finally, I am working on my craft area and trying to get it organized. It is not easy. I hope I can get it situated so I can get back to crafting. It helps me relax and I need to relax! Do you craft? What do you do?

That’s it for me for now. Take it easy and stay well! Gentle hugs!!!


Ah,finding your true worth?


This is a bit off topic but I feel compelled to write it nevertheless. I have learned to accept the challenges of living with several auto immune diseases and other illnesses.I help my kids and grandkids when I can, and have taken care of my mother and mother-in-law as well. I have moved states, been a walk participant, been in drug trials and seriously given a lot of myself to others. I neglected one person though, myself.

I am in therapy now, to help me get myself back. I have buried myself taking care of everything and everyone around me to the detriment of me. I am now in a major flare, worse than in recent history, and I am finding it hard to adjust to taking care of me. The first step is to get my cataracts taken care of so I can drive at night again. The next thing is to see about these knees getting replaced. I have a list of items needing taken care of but I had been so absorbed in the daily drama and task of taking care of my husband, who is an end stage alcoholic, and his many hospital ER visits, admissions, ICU stays and rehab facilities located all over this state. Transporting him from pillar to post only to have him return home and begin drinking again. It is not pretty around here.

I allowed myself to be used. I ALLOWED myself to be used and neglected taking care of me during this chaos and drama laden time of the last year. As I stated, I am in therapy right now. My therapist is very encouraging and is helping me to see what my role in this is. She is also helping me to see that I do not have to do anything I do not want to. I can stop being used by others by respecting myself. Tall order. I feel worthless most days.

I can see clearly now how the verbal abuse, the mental abuse and the emotional abuse have taken a toll on my body and mind. I am seriously ill right now. My eyes are open though to the manipulations and techniques being used on me. I have to take responsibility for allowing myself to be manipulated, but I am not taking it anymore. As a result, I have an end game or plan in progress that gives me a sense of security. I am free to follow what I need to do to be healthy physically, mentally and emotionally. I am learning how to love myself. It is really empowering to do just that.

I have been living in a self centered and narcissistic home for a long time now. I have been treated really awful, and made to feel like it is all my fault. If it is not his way, then it is no way. A drunken dictator who is to be obeyed and how dare I have a thought about anything other than him? It is not pretty.

I am writing this because I need to put it out there. It validates my feelings and the fact that my eyes are wide open now. I am still here. However, I have an exit strategy prepared and ready to implement if no changes are made in MY time frame, not his. I doubt he will change, so it may well be I will be embarking on a new, single, adventure. Who knows? Am I afraid he will read this? Nope  You see, he is only interested in himself and not any thing I may do. The time is coming, and I plan on living the best I can until then. Wish me luck!

I hope you all are healthy and happy! I hope to be soon!


Remission Answer


I last posted that I might be in remission, or at least working on one. I was hopeful, because I was finally getting things done with little pain. I walked two days in a row, half a mile each day. I was busy starting my seeds for my garden. I was making plans for doing things this summer with all my energy and feeling so good. yeah, I was so happy and getting excited about possible remission. Plans to live and enjoy these pain lowered days. Of course, lupus is unpredictable.

The answer to remission is that no, I had a brief glimpse of feeling “normal” and now I am back to painful living with lupus. I think the cold front that came through didn’t help any either. Ouch! My joints are screaming in pain right now. It is hard to walk. It is that all over pain and fatigue with it. For the uninitiated, it is like having the flu but worse because my joints and painful to the touch and it is hard to move.

I at least got most of the spring cleaning done and can relax a bit about that. I got several things done. It feels good. I wish my body would cooperate with me but lupus doesn’t play fair. Oh well, I am alive and kicking at least. Have any of you had this situation happen to you? I hope you are all pain free and living life to its fullest!



Hello! Well, I am excited but trying to remain controlled. You see, I am actually feeling better, much better than I have for some time. I am not sure why the change but I will take it. Remission is a word all of us with lupus want to hear. To be fair, I am hoping it is remission but the doctors say I have to be feeling good for six months before we can actually call it remission. So for now, let’s just say I feel good.

When I say I feel good, I mean that yes, there is pain, but the pain is minimal. It does worsen at times but I am not a slave to the pain right now. I have been to the rheumatologist and my labs are great, with the exceptions being my SED rate and ANA.  My doctor wrote me a prescription for prednisone and wants me to take low levels for a bit. I took three days worth and stopped because I felt better before I took it. It is good to have around in case of flare up though so I am armed and ready should a flare decide to come a calling.

Since my labs were pretty good, the doctor decided that I do not need the benlysta infusions for now. I was on the drug trials for that drug and it really did help me when I was taking it. I was on the trial of injecting myself in my stomach. It was not difficult and it did help so I am glad the infusions are there should I need them.

For those who are not sure what a lupus remission is, here is some information I culled from

Understanding lupus

How is remission in lupus defined?

There is no formal, approved definition for lupus remission. However, the word “remission” is sometimes used to describe certain situations. One situation is a person who presents with a disorder which appears to be systemic features of lupus but after a while, their symptoms, physical exam findings, and blood abnormalities go back to normal and stay that way, even after any prescribed medications are stopped. Some doctors might feel that the person did not truly have lupus, but probably had something else causing lupus-like problems (which can be seen with certain infections, such as parvovirus infection.)

The more common usage of the term “remission” would be to be “in remission on medications, or quiescent (quiet).”” This would mean that the person with lupus is taking Plaquenil® (hydroxychloroquine) and/or other medications and is doing well with no evidence of lupus manifestations such as arthritis, rash, kidney involvement, blood cell count problems, etc. This is the goal for most people with lupus, but is not always possible.

When a person is in remission while taking medications, doctors always try to taper steroids down to the lowest possible dose, and, if possible, to stop them. Most people are counseled to keep taking Plaquenil long after the disease is quiet. Non-steroidal anti-inflammatory medicines such as ibuprofen, Celebrex®, naproxen (Naprosyn®), etc. should be stopped if there is no pain. Immunosuppressant medicines (such as methotrexate or Imuran®) can sometimes be decreased little by little, but this all depends upon the exact history of the individual’s disease.

Medically reviewed on July 18, 2013

So there you have it. Yes, I am still on my medications. I am taking my plaquenil daily. I have prednisone for any bumps in the road. I am taking Tylenol daily still for my knee. Otherwise, no chemo drugs (Yay!) and all is quiet right now in my body. I hope it remains this way because I have so many things I want to do and have been unable to do. Who knows? Remission? Maybe. Possibly. Hopefully. We will see.

On another topic, do any of you garden? This spring I am planting my garden and I have already started some seeds. I get my bean and tomato seeds from a neat place that has non GMO heirloom seeds from the Appalachia regions. They are truly great producers of veggies and taste so much better than those modified seeds do. The place I get the from is in Kentucky. It is called I highly recommend their seeds and they show you also how to save your own seeds year after year. The mans name is Bill Best and he will talk to you and help you  in any way he can to preserve the seeds that are nutrient rich and much tastier than anything on the market.

If you garden how do you preserve your foods? I dehydrate and can plus I do freeze a little. I would much rather have my food shelf stable in case of electricity going out. I find pleasure in growing the garden and preserving it so we have good foods that I grew and we can have them in winter. I love the whole process. It makes me feel good. Plus, I love to cook so it really is enjoyable. I know what is in the food, any additives, and it is much healthier than buying the food at the store.

Hope you are all feeling well and that the warm weather lifts your spirits!

Why Are People So Insensitive?


Hi everyone…sorry I have been gone for a bit but life has been extremely full lately. I apologize for the absence and wish to say hello to all the new folks out there in lupus land who have joined our little blog. That being said, on to the topic of the day.

Why are people so insensitive?

Just two days ago I had a new thing crop up in my journey with lupus and life in general. I have developed high blood pressure and my doctor decided I need medication to control it. No biggie, right? Wrong. You see, despite having a strong genetic back ground of heart disease, and actually having electrical issues resulting in a coronary ablation, I have always had good and low heart rate and blood pressure. It was the one thing I could hold on to and say that at least I was good on my heart. Until now, that is.

I know many people have issues with this. I get that. As a matter of fact, I only told a few people that this happened to come to light. My so-called trusted circle. The response?

“What DON’T you have?”

Have you ever heard this? I have from several people in my life. I know people say things not meaning to hurt you. I get that people do not understand the complexities of our disease(s). They do not understand how sometimes we develop overlapping diseases along with lupus. I get that. However, I find this is one of the things that hurts me the most. People ask you about your issues specifically and when you are honest, they ask you something like the above comment. It hurts.

I have decided to really stop educating others about this disease anymore with the exception of this blog. My friends and family will not hear any more about what is happening in my healthcare life. They ask, but they really do not want to know. Most of my family seem to think I am just lazy and want attention. Well, so be it. My resolution is to live my life, do what I have to do to stay living, and pretend all is well when I am asked how I am doing.

Yes, I know, I seem a bit sensitive. It is just that people say these things and they seriously hurt me. I am astonished at the audacity in the manner in which it is said even. Like I picked out a new thing to have wrong with me. Ok, well, I feel a bit better getting it off my chest. Have any of you dealt with people who are insensitive and even cruel in their comments to you?