Walk for Lupus Now 2011

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Wow! It has been a busy week so far for me and it will end with the Walk for Lupus Now event on Saturday. Our team has raised $150 but as it stands right now, we will not meet our goal of $500. I am sad about that because we have met our goal the last two years. I am a goal oriented person and it does bother me. However, we have raised some and since our cause needs all the help it can get, anything is better than nothing! I have just been too sick to get out and beat the bushes as in the years past.

We have had some wonderful sponsors chip in to give us a good base to go with. Subway is an awesome sponsor with two different locations giving us freebies to give out! Kudos to them for their community spirit and giving!

Premier Innovisions is another local company that stepped up to the plate. The owner, Keith Turner, is my former brother in law and he generously gave so my granddaughter would have raised some money! His company is located in Franklin and does corporate IT management. More community spirit!

Chappy’s Tap Room and Grill in West Carrollton gave us a gift card good for $25 to give away as a raffle gift. I have eaten there, and the food is delicious and the atmosphere is great. Whomever wins this gift card will be getting a treat for sure!

Sonic in Middletown gave us ten peelie cards worth over $20 each! They did not hesitate when asked and gave freely! If you have ever been to Sonic, you know their food is pretty awesome and their milkshakes and drinks are amazing!

I have also talked with other local businesses that are willing to get their corporate offices involved and for that, we are grateful! This is only our third year and we are still building our corporate base so to find the willing businesses is a blessing! We are working on this now so we can get rolling on next years event!

We also found that JD Legends, the local bowling facility and concert/sand volleyball place has generously allowed us to book an event to raise even more money! We are booked for June and will be having a silent auction and a 50/50 drawing plus a fun night of bowling! I tell you, this community really does step up when asked to assist in something like this!

This Dayton/Cincinnati corrider can be proud of all the willing businesses who not only WANT to give but do so without any pressure. When asked, they do not hesitate but try to formulate ways to give us the assistance we need to make the event a success!

We are working on establishing new business relationships with corporations in the Dayton area and the Cincinnati area. Each year we will get better at this so please be patient with us. We have many ideas we are working on and hope to get this walk noticed on the national scale as well!

Our walk has more lupus patients in it than many others. This area of Ohio has many lupus patients who are suffering and living each day as best they can. I am one of those patients myself. Our walk is special because so many lupus patients come out and walk the walk! If others knew how hard this is, they would be helping out and not just ignoring us.

I guess that is it for me. I am proud to be a part of something that indeed does touch my family and many others. We are on our way and we will keep walking until a cure is found!

Grass Fed Beef and Its Benefits

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I have been researching the difference between grass fed beef versus grain fed beef and found a few sites here in my home state of Ohio who are not only raising the beef, with no hormones or grain feeding, and another web page that gives farms you can contact to get more information. I am glad to pass this information on because I know that many others are beginning to see the benefits and wanting to know more about it as well.

My interest began when I watched a show on PBS that detailed the business of corn fed meat and how corn has contributed to the overall obesity in this country. It was an eye opening show and it made me rethink what my priorities are. Basically, it comes down to money versus health.

I hope if you are interested, you will read more about it and research it as well. Here is the link of the show and the web pages I mentioned as well.

www.pbs.org/independentlens/kingcorn/film.html

http://www.eatwild.com/products/ohioresources.htm

http://www.grassfedfarms.blogspot.com/

Blast From My Past!

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I am indulging in a few lost memories tonight. Today my husband and I drove to Indiana to pick up our “new” truck. Actually it is a 1979 truck but hubbys new toy. We made the drive through Oxford, where I went to college. Miami University of Ohio to be exact. Did you know that Miami University was a school before Florida was even a state? Yup, the university was in business before Florida was even part of the US.

Memories of a different life, time, and place lazily drifted through my mind. I remember the sights and sounds of young voices laughing and talking and studying together. I remember the beauty of the campus with all the big trees and the cobblestone roads. I remember going to Millett Hall to see Elton John in concert with my mom. (That is a whole nother story!).

It struck me how quiet the campus is during the holiday break and yet, life is there… people are still walking the downtown, drinking coffee, and looking at the storefronts. I saw a few college kids but this time the people were mostly residents, older folks, enjoying the quiet too, I would think.

When I was at Miami, I was a driving student. I was not a resident student. I happened to live close enough to drive every day. Somehow, it is not the same thing as living on campus. Two of my cousins did that. They went to Miami too and since they were from Virginia, they lived on campus. I was so jealous.

While attending Miami University (Ohio), I did do a few memorable things that I wanted to share. Since I was a non-traditional student (I was divorced and had 3 kids), I commuted to my classes. At some point, I came up with the idea that students who were parents needed help. After recruiting a few other parents, we formed the organization SPOC. It stands for Single Parents On Campus. To the best of my knowledge, it is still in existence today. My daughter (who also attended Miami) said she saw my name as a founder of the group. I had forgotten, to be honest, because it seems light years since I was such an activist. I am not really an activist, but I do tend to make ideas happen then move on and forget about them once they are implemented.

 I also remember my classes and a few of my professors who made an impact on my life and education. One of my favorite profs was Donna Klaaren, my anatomy & physiology teacher. She was an RN who was married to an orthopedic surgeon. Many did not like her, but I found her to not only be approachable, but a mentor as well. She wore high heels each and every day, and she was in her fifties or sixties at the time. She was clear, concise and demanding, but she was also fair. Point in fact, while I was in her class the first time, I found out I was pregnant with my third child. I had to drop my semester classes because it was a high risk pregnancy. She not only made it easier for me to come back afterwards, she helped me so it did not imfluence my grades or GPA. She was not my advisor, but she took time out of her busy life to mentor me before I left to have my child and after when I returned.

Another of my favs is Ms. Allred. She was my western civilization prof and she was also the professor we chose to help us in forming SPOC. She was a divorced single parnet and so she seemded to be the right choice in an adivsor. I remember once we had a get together at one of the members homes and I gave her a ride in my beat up old clunker. What a hoot!

One of my kookiest profs was my psych teacher. He was British and always came to class int he same clothes, day after day, carrying a beaker with a mysterious amber liquid in it that he would sip during class. Mr. Cooper was his name. I took the first level class, went to class every day, learned all the important theories and junk, then proceeded to get a minor in psych. Yeah, I would show up at the first class each semester, get a class syllabus, then only show up for tests. No books, or anything. Finally, he approached me and asked how I was doing it, because I had solid A’s in his classes. I did not have an answer but he told me I had a natural apptitude for the science of psychology. Hmm, who knew?

My connections to the university go further when my daughter graduated from there as well. She was not only a student but also had her wedding on the campus. Her husband is also a graduate from Miami. When you marry someone who graduated from Miami or if you both went to Miami, you are considered a Miami merger.

Anyhoo, these memories all came flooding back just by driving through the town of Oxford, Ohio. A trip down memory lane, unexpected, but refreshing to open my mind to the past.

Lupus and Disability

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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.
Amen.

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…

Rollercoaster (of lupus)and p.s.doctors

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Well, once again, here I am expounding the ups and downs of this disease called lupus. The big bad wolf (as it is also known) has taken a big bite out of me lately by keeping me close to my bed and not allowing me to have energy for but a few moments at once. All in all, it has been tough this last five days or so. In keeping with the promise to tell the good with the bad and ugly, I am writing this blog today to share some really good news!

Today was a decent day. I have been out of bed most of the day. Albeit, I have been on the couch for most of it, but I was out of bed! This is a considerable victory for me because a few days ago, it took all my energy just to get to the bathroom. I even babysat my grand Courtney Scarlett for two hours while her mom took my grandson to see the doctor. She is good medicine for me (as are all of my grands). She sat quietly on the couch and watched Dora and Team Umizoomi with Meemaw.

I have found that, contrary to popular belief, children are quite intuitive about adults. In my experience with my grandchildren, I have found that they know when I can or cannot be more active with them. My grandchildren have seen their grandmother in the hospital, taking many pills daily, in bed, on the couch, and basically flat on my back so many times that to them it is a normal thing that I am not able to do much physically with them. On the rare occassions when I am able to do more than my “normal”, they are astonished to see their Meemaw running or jumping or being silly. I have tried not to upset them by having them see me give myself injections of meds, or the pain when I move or walk, etc., but they have learned from infancy that this meemaw cannot do things and they accept me as I am.

It is an amazing thing that children can accept you as you are and love you still, yet most of the world at large seems to not be able to accept you as someone with a disease that doesn’t show. Most try to put you in a category of any of the following: fat/skinny, lazy, attention seeking, hypochondriac, doctor shopping, pill popping, all in your head, making it up, oh please; types of things so they can justify making fun of you or dismissing your illness altogether. We have all had this in some form or another in our disease process. It can even include doctors we are looking up to for help and healing.

I am going offtrack now but on to a rant of mine so here goes…

Ok, here is a tidbit about me. I love to watch the television showMystery Diagnosis“. Do you know why? It is because there are many more people out there who have serious and debilitating diseases that have been in the same boat as many of us lupies. They have been to many different doctors, who have told them any number of things and even dismissed them altogether, only to find that one rare gem of a doctor who listened and put it all together.

On this show, I heard a comment from one of the doctors who had helped one of these people to find the correct diagnosis and was treating the patient for it. He made the statement that doctors should know the difference between lumping and sifting. He said doctors should always look at the overall picture (lumping) of the patient and how they present to the doctors versus the opposite by treating each small bit of the disease piece by pice by many different doctors (sifting). For example, if you have lupus, you may have gone to your primary care doctor first, who then referred you to another doctor who treated you for one thing, then sent to another doctor who treated you for another thing, but in the long run, none of them saw the overall picture of the lupus constellation of symptoms. It happens on almost every show on this tv series. It never ceases to amaze me that so many of our doctors out there are just skimming by on the first easy thing they can find to “take care of” the reason for your visits.

I know, there are many good doctors out there. I have several in fact. However, it is by trial and error that I have happened upon them. I really do trust my doctors and the main reason why is that they respect me as a person. If I call or come in to see them, there is a valid reason and they know it. As a former medical professional, I am not some one who is afraid to speak my mind. I have personally “fired” a couple of doctors in my time. I have moved to different states and kept my doctors here in Ohio because I could not find ones who were as qualified and competent as the ones I see here. I have tried to find some, but even if it starts out good, they always seem to let me down by assuming I am some ignorant female who is attention seeking. I have heard that one before. They fail to see that I am sick, truly sick, and only want to be well, or as well as I can be.

The thing I want to stress most emphatically is that we patients are the consumers here. We are the ones who pay the bills. If you are not satisfied with your care, find another doctor.   As frustrating as the process may be, in the long run, a doctor who respects you and your feelings is the one you will get the best care from.

One of my doctors that I know as a person as well as a doctor, always gives me hugs when she sees me, either in her office, or in public. She is a nurturing and caring person who believed me when I thought I was losing my mind. She knew that I was not making this stuff up and she kept on until we found out why. We all need and deserve a doctor like this one.

I know, many doctors are overworked and only have a few minutes to give to each patient, however, by being prepared and taking an active role in our medical care, we show them that we are as responsible for our care as they are and a true healer will appreciate us taking that active role. I say beware of those doctors who have a god complex. If they think your ideas or your research or your opinions are of no concern and act like you are silly for any of them, then leave at once and find someone who will take the time and give you their respect. After all, it is YOU who is sick, not them. It can be very enpowering to find where your doctor falls in this equation and enlightening to see how they feel about you and your feelings.

Now what has brought this on, this rant of mine? I read an article that many doctors think patients should not become empowered by researching their diseases and asking questions from this research. Hm… interesting indeed. I think I have made my point on this subject clear. In the meantime, I hope you all find doctors who are genuinely interested in your health and care and give you the respect you deserve. I now will step off my soapbox…

Seasons of Change

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This time of the year in Ohio is one of the most beautiful. Trees are beginning to change the colors of their leaves, the air gets crisper and cooler at night, the breezes bring a welcome relief from the summer’s oppressive heat and people begin to look forward to winter. I love this time of year. This time of year, does not love me. Why?

When the air gets that lovely crispness in it, my asthma acts up. My allergies are in full swing as well. The cooler air and air pressure changes cause my joints to ache and swell up, and can make me feel out of control of my own body. I am a human barometer.

I used to make fun of my grandfather because he always knew when the cold fronts were coming through. He felt it in his bones, he said. More likely he felt it in his joints like I do. As a matter of fact, my fingers are aching as I type this. Yup, it is confirmed, I have become like my grandfather in this respect.

Science has conflicting ideas about the body being able to tell when a front is coming through. There have been multiple studies done, some proving it true, while others proving it false. In the lupus population, I daresay, we could make the scientists believers.

Personally, I know I feel it. I do not watch the news much (too depressing for a depressed person like me) so I do not know the weather forecast unless someone tells me or I happen to catch it in passing. My joints tell me when rain is coming, a cold front is coming, even snow I can feel in my bones. My feet are turning colors (purple) as well. I feel sure that there are many others out there who are experiencing the same thing. I feel that it is because we lupies are more in tune with the pain centers in our bodies and can feel the slightest changes more readily than a healthy individual would. We have learned to “listen” to our bodies.

So, while this time of year is delightful with its crystal clear blue autumnal skies and brilliant display of colorful leaves and cool crisp air, it is also a double edged sword to those of us who deal with these disease of the joints. Our mission then, is to try to find a balance between the pain and the beauty.  So here’s to all of us lupies out there, walking with the leaves crunching under our feet, and here’s hoping that you will get out there and enjoy the fall weather and try to not let it rule you with pain. Find pleasure in the simple things all around you and it will indeed help keep your pain in its place. Mind over matter, so to speak.  While you are enjoying the fall and all its wonder, please remember to not focus on the negatives, but ont he positives all around us. In this way, the big bad wolf cannot win!