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!
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.
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 show “Mystery 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…
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!