Home and Away

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Do you get out much in winter? Do you find yourself wishing you could?

I am pretty much housebound in winter. My reasonings are pretty simple. I have to be careful not to slip or fall thus breaking bones. I also tend to have worsening of pain after going out into the cold. I have raynauds too so I am more vulnerable to the cold. If you add in the migraines from the whole hot to cold, well, you can see why I am reluctant to go out.

I am fortunate in that I can maintain my spiritual health by phone and visits from those in the congregation. When it is time for my meetings, I call in and I can listen in and it feels like I am there. It is a loving provision and I am grateful for it.

It is easy to get depressed during the winter, and more so because of having to stay indoors. It is important to get sunlight into your day even if only briefly. The sunshine truly brightens your spirit and helps those prone to seasonal affective disorder by giving you the needed sunlight.

I admit to not opening the curtains much here but it is because if the sun is too bright, it can trigger a migraine. It’s a catch 22 for me so I try to dampen down the brightness so I can have the needed sunshine, just not too strongly.

I hope you all are faring well this winter day. As I write this, I am looking out onto a deep carpet of glistening snow that is sparkling because of the sun shining into it. We have around five inches out there right now and more forecast for tomorrow. This has been one of the snowiest winters in recent years. I don’t mind too much since I can watch it from inside my warm home. However, if you have to go out, please be careful. Have a great day!!

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Cats and chronic disease

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I am repeating this post because, believe it or not, while I was at the doctor’s office today, the Arthritis Today magazine had an article about pets and arthritis. Ironic, but I figured it made for a re-posting of this older post. Enjoy!

 

I have a cat. Her name is Shelby. She was a foundling who adopted me. She is also so much more than just a feline friend.

Shelby has an intuitive nature that allows her to see when I am ill and respond to me. When I am in bed, like now, she is laying next to me. When I am asleep, she lays either next to me or above my head. Some days, she is not around and that is usually when I am feeling good. She goes about her business as she normally would do.

When my lupus is acting up, though, she is right by my side, purring and rubbing on me and trying to help me feel better. It is uncanny, (or should I say, uncatty) how she knows without me saying a word, that I feel awful. She is not overly in my face, but she is on the periphery should she be needed.

While my cat is unique, she is not the only one who is intuitive. I read a story a few years back about a nursing home that had “adopted” a stray cat. The cat was allowed to roam the halls and “visit” with the residents. This cat had an intuitve nature too. It was discovered that the cat would go to a particular resident who was imminently ready to pass away. When a resident was at this point, the cat could not be coerced to leave the room of the resident. It would stay until the person passed away. It became noticible to the staff and they would know by the cats behavior, whether there was an impending death or not. They felt that the cat didn’t want the person to be alone, so it would stay on the bed with the person until after they passed.

I also saw a story about cats and patients with AIDS. The story said that those patients who had cats, tended to live longer than those who did not have a pet cat. Cats were the pet of choice because they did not require as much work as dogs and chronically ill people may not be able to give a dog the exercise they need.  Who knew?

So, my Shelby has this same empathy, but for me. She has been a true and loyal friend in my down times and always helps me with her presence. She is not a “talker” type of cat, but she is always here, by my side, when I need her most. She does not judge me, or make me feel I am worthless when I cannot do things. She is just here, faithfully, making me fell loved.

Funny that a cat can do that and so many humans can’t. We should take a lesson from the animals on this one!

Social Networking for the chronically ill

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I found this article fromt he NY times and thought it relevant so enjoy!

Social Networks a Lifeline for the Chronically Ill

By CLAIRE CAIN MILLER Published: March 24, 2010 

A former model who is now chronically ill and struggles just to shower says the people she has met online have become her family. A quadriplegic man uses the Web to share tips on which places have the best wheelchair access, and a woman with multiple sclerosis says her regular Friday night online chats are her lifeline. 

 Amy Tenderich, who has diabetes, writes a blog and manages the social network Diabetic Connect from home in Millbrae, Calif.

For many people, social networks are a place for idle chatter about what they made for dinner or sharing cute pictures of their pets. But for people living with chronic diseases or disabilities, they play a more vital role. “It’s really literally saved my life, just to be able to connect with other people,” said Sean Fogerty, 50, who has multiple sclerosis, is recovering from brain cancer and spends an hour and a half each night talking with other patients online.

People fighting chronic illnesses are less likely than others to have Internet access, but once online they are more likely to blog or participate in online discussions about health problems, according to a report released Wednesday by the Pew Internet and American Life Project and the California HealthCare Foundation. “If they can break free from the anchors holding them down, people living with chronic disease who go online are finding resources that are more useful than the rest of the population,” said Susannah Fox, associate director of digital strategy at Pew and author of the report. They are gathering on big patient networking sites like PatientsLikeMe, HealthCentral, Inspire, CureTogether and Alliance Health Networks, and on small sites started by patients on networks like Ning and Wetpaint.

Sherri Connell, 46, modeled and performed in musicals until, at age 27, she learned she had multiple sclerosis and Lyme disease. She began posting her journal entries online for friends and family to read. Soon, people from all over the world were reading her Web site and telling her they had similar health problems. In 2008, she and her husband started a social network using Ning called My Invisible Disabilities Community. It now has 2,300 members who write about living with lupus, forthcoming operations or medical bills, for example.

“People have good and bad days, and they don’t know a good day’s going to come Wednesday at 5 o’clock when a live support group is meeting,” Ms. Connell said. “The Internet is a great outlet for people to be honest.” Not surprisingly, according to Pew, Internet users with chronic illnesses are more likely than healthy people to use the Web to look for information on specific diseases, drugs, health insurance, alternative or experimental treatments and depression, anxiety or stress. But for them, the social aspects of the Web take on heightened importance. Particularly if they are homebound, they also look to the Web for their social lives, discussing topics unrelated to their illnesses. Some schedule times to eat dinner or watch a movie while chatting online.

John Linna, a pastor in Neenah, Wis., did not know what a blog was when his son suggested he start one after discovering he needed to stay home on a ventilator. “That day my little world began to expand,” he wrote in a post last year about blogging. “Soon I had a little neighborhood. It was like stopping in for coffee every day just to see how things were going.” When Mr. Linna died earlier this year, people all over the Web who had never met him in person mourned the loss.

Others use the Web to find practical tips about living with their disease or disability that doctors and family members, having not lived with it themselves, cannot provide. On Diabetic Connect, a diabetes social network with 140,000 members, people share recipes like low-sugar banana pudding, review products like an insulin pump belt and have discussions like a recent one started by a patient with a new diagnosis. “I don’t like to talk to my family and friends about this,” she wrote. “Honestly I feel helpless. I really just need some advice and people to talk to who might have been experiencing the same things.”

Amy Tenderich is the community manager for Diabetic Connect and writes a blog called Diabetes Mine. “There’s no doctor in the world, unless they’ve actually lived with this thing, that can get into that nitty-gritty,” she said. “I’ve walked away from dinner parties with tears in my eyes because people just don’t understand.”

Patients often use social networks to interact with people without worrying about the stigma of physical disabilities, said Susan Smedema, an assistant professor of rehabilitation counseling at Florida State University who studies the psychosocial aspects of disability. From her home in Maine, Susan Fultz plays online games at Pogo.com and commiserates with people who are frustrated that they do not have a diagnosis for their symptoms. “There’s no worry of being judged or criticized, and that is something that I know a lot of us don’t get in our daily lives,” said Ms. Fultz, who has Lyme disease and psoriatic arthritis.

Those with chronic diseases or disabilities, like all Internet users, have to be wary about sharing private health information online, particularly with anonymous users. Research has also shown that emotions can be contagious, said Paul Albert, digital services librarian at Weill Cornell Medical Library in New York who has researched how social networks meet the needs of patients with chronic diseases. “If you hang out on a message board where people are very negative, you can easily adopt a negative attitude about your disease,” he said. “On the other hand, if people are hopeful, you might be better off.”

Some people also worry that patients might exchange erroneous medical information on the Web, he said. Yet most patient social networks make clear that the information on the site should not substitute for medical advice, and the Pew study found that just 2 percent of adults living with chronic diseases report being harmed by following medical advice found on the Internet. Instead, the sites are used to share information from the front lines, said Lily Vadakin, 45, who has multiple sclerosis and works as a site administrator for Disaboom, a social network for people with disabilities.

For instance, she has discussed with other patients how to combat fatigue by working at home and taking vitamin supplements. “That’s what the community can give you — a real-life perspective,” she said.

A version of this article appeared in print on March 25, 2010, on page B3 of the New York edition.

The Lupus Community

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Many of us have friends, some life long and others shorter term. One of the things that bind us as friends, is a commonality of something. Call it a community of sorts. I have several of these communites in my life. The one I am going to talk about today is the Lupus Community.

I have lupus. This can be a devastating thing that can overwhelm you when you are first diagnosed, and leave you shell shocked for some time. After the intial shock wears off, the knowledge phase kicks in, namely, where you research and learn more about this disease and its effects on your life and family.

It is during this phase that many of us have found a surprising community of folks who have been there, done that and now help others just like themselves. I call this the Lupus Community.

Now, to be certain, you would think that to be great friends would require seeing each other daily, talking on the phone, and sharing life’s events. Yes, that is true. In this community though, we do all of the above with tthe exception of seeing each other in person. We “see” each other online.

In this community, we can share things that we would not tell others. We can be honest, and discuss the way this disease has affected our life, warts and all. We can be brutal in our descriptions of certain manifestations of the disease and feel free to express our innermost feelings without fear of judgment or belittling that many “normals” sometimes do inadvertantly. If we are depressed, we can tell others and know that they will lift us up and help us to get through it. It is a community of others who are dealing with many of the same issues that are difficult to describe to those who are not ill. We laugh at our jokes and inadequacies, we cry when we lose a friend, we rejoice in remission, and we commiserate in our pain. We share links with information and discuss various clinical trials and developments as well as improvements in care and even good doctors versus bad doctors.

In the end, it is a community of caring, intelligent individuals who share a commonality of an incurable disease and who are living with it each and every day. When those closest to us get tired of hearing our complaints, this is the community that will help us and bolster us as we survive each day and keep the wolf at bay. It is a sounding board for us to vent and scream, to cry and laugh, to share and care. We cross all socioeconomic boundaries, all races and religions, and all countries across the world. We speak different languages and have different colors of skin. Underneath it all, though, we share the wolf. We fight it as one, and never give up on each other. We are men and women who share this unique bond. We are young and old, we are survivors one and all.

I am blessed to have found this community and to share it whenever I can. Yes, I may have in incurable disease called lupus, but, and here is the difference, lupus does not have me! I am a lupus survivor! I share this distinction with many millions earthwide! We will fight until our last breath each of us! If you are newly diagnosed, please join in the lupus family and you will feel the love and caring that I have experienced…

See, I am indeed blessed…

UGH

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Ok, so I admit it, lately I have not been blogging. However, the reason are many and also why I needed to be blogging again… a paradox but true. You see, I am in a flare and it has been particularly ugly. That being said, I have also been on steroids again to treat it.

I have been feeling pretty bad. Even with prednisone. No matter what I am taking. It sucks. Big time.

This flare is making me miserable and no getting away from it, it is a bad one for me. I cannot move at times and I lay down and sleep at all times of the day. I am having pain in my joints so bad I cry. I hurt when I drive, my ankle joint hurts. I really have downplayed it but this is a bad one. Add the misery of this heat and humidity, and I feel like never getting out at all.

Many of my fellow lupies have been having issues too, so I am not alone. This disease will not win!It can take my life, but not the living of it!

I know, I am complaining again, but if you felt like I do, you would be crying I tell you! Normal people have no clue how painful it can be just to get up and walk to the bathroom. Simple acts, like getting in and out of a car can bring excrutiating pain in the joints and therefore, are not to be done unless absolutely needed. Fingers throb in pain from the act of typing. The headaches from the prednisone tapering off are horrible! Now, add to that, having to try to act like you are not in pain, and you have my life.

My family is supportive in so many ways. My sons seem to cope better than my daughter, but they get it, all of them. Some days their mom is out and about and having a great day, and other days, you cannot get me out the door. Plans can be made, but only with the disclaimer that I may not be able to do them when they arrive.

I have to try to keep all the doctor appointments in line and make them but if they are not on my calendar, I forget about them. The memory is having issues, not like alzheimers, but all of my memroy, sometimes, odd bits will be forgotten, then reappeaar again. No rhyme or reeason. I hope the neurologist will get to the bottom of it. I have my emg this week, oh joy… and of course, the moving. Gee, wonder why I am so sick?

I am sorry if this is negative, but it is truthful and if I am not truthful, then I am lying to myself.

The bright spots in my life are my grandchildren. They give me a reason to hope, to believe, and to live. I am blessed to have them! I am thankful to Jehovah for them every day. My friends are another of my blessings. I have some outstanding people in my life who help me in so many little ways that they may not even be aware of doing it. They are my heroes and keep me fighting each and every day.

I guess I hope that if someone reads this and is one of the “normals” or people without lupus, they would see that life in our shoes is not pretty, or without substantial pain, but it is lived despite these things. I used to like helping others when I was normal, now I am thankful for those around me who give me help when I need it! I may look like I am not sick, but the war inside my body rages on and it is up to me to decide to have a good attitude or not. I cannot control the disease, however, I cannot let it control me. Yes, it hurts, yes, it is hard to live with, but I refuse to let it win!

I seem to be a little flighty tonight, but that is also what it can do to you. It is called brain fog, and it is a medical condition associated with lupus. This rapering down on prednisone is rough too. Forget about my fat “moon” face and the unwanted weight gain, the fact that the pain returns as you taper down is enough to make you cry! Then the mood swings from the drugs is there as well. It can be up and down and all around and if this is rambling, you can see how it can affect us! It sucks. Lupus sucks.

For today, I am choosing to be happy, and smiling, and loving. If I try hard enough, maybe the pain will give me a few little breaks and I can feel as normal as I can for a few minutes! If not, I will smile through it and wait until I see my neurologist and rheumatologist this week and see what they think… I will keep you updated!