Lesson Learned Category
Monday, November 30th, 2009
One of the greatest ideas for someone with rheumatoid arthritis is Cyber Monday. Retailers across the globe are discounting merchandise and many are offering free shipping on Cyber – Monday.
For me, when my RA is flaring or even when it isn’t there are some things that can be just too much for my body to tolerate and shopping is one of those things. While I really enjoy shopping, the Holiday shopping can be overwhelming for me and just too much for my body to handle. This year and for the past few years Cyber Monday has been a life saver. I just simply point and click and purchase my gifts and they are delivered to my doorstep.
I do try to shop from online retailers that I trust and have used before. Most of my shopping is done at stores that either offer free return shipping if there is an issue with the product. Or I will use a merchant that will take the product back at a brick and mortar store nearby without hassle. I don’t mind that if it is only an occasional thing. I have been fortunate that I have not had any problems with any of the purchases I have made in the past.
Cyber Monday has made the holidays a more enjoyable time for me because I do not have the worry of over doing it and ending up out of commission for days. And I don’t have to worry about planning out a shopping strategy to spread the shopping out over several trips to insure that I don’t over stress my joints.
For me easing the stress of shopping has made the holidays a more enjoyable time.
Happy shopping.
Tags: arthritis, Cyber Monday, free shipping, Holiday, Monday, online, over doing, RA, retailer, rheumatoid, rheumatoid arthritis, stress
Posted in Autoimmue Disease, Coping, Decisions, Lesson Learned, Rheumatoid Arthritis RA, Solutions, Spirit | 3 Comments »
Saturday, November 21st, 2009
The past several years I have hosted Thanksgiving dinner. I really enjoy spending time with those I love most and taking some time to reflect on what I am most grateful. This year I will again host our Thanksgiving dinner and what I have learned over the past few years and through a fair amount of trial and error is that planning is key to a successful day.
Planning is important for anyone hosting Thanksgiving dinner, but when you have rheumatoid arthritis you really need to plan well in advance. If you don’t allow enough time to get things like cleaning and shopping you run the risk of overdoing it and ending up out of commission for the big day. I try to start preparing 2 weeks ahead.
During the first week of preparation I try to make sure that all the dishes, glassware and silverware are all clean and polished. I also iron the table linen and work on a centerpiece for the table. Some of the housecleaning that can be done during the first week of preparation include cleaning out any cobwebs and washing windows. I plan the menu and start grocery shopping. I try to split the grocery shopping for Thanksgiving between 2 weeks so that I am not overwhelmed on either week and it also spreads out the cost over two weeks. If something is forgotten in week one, there is always week two to pick it up. I put the leaf into the dining table during this week as well. If you have a separate dining room I would recommend setting the table for Thanksgiving during this week. We use our dining room daily so that isn’t an option for us so I have to wait until the night before to set the table.
The weekend before Thanksgiving I get my husband and kids together and everyone gets assigned cleaning tasks. This includes cleaning the bathroom, vacuuming and dusting and polishing the furniture. Because everyone gets a chore I am not overwhelmed and the tasks get done fairly quickly. I know that this sounds a little early to clean but I leave the day before to do the touch up cleaning. A quick dusting and a once over with the vacuum the night before is all we will need.
When it comes to the cooking, I used to cook everything and our guests just showed up and enjoyed the meal and our company. After overdoing it the first Thanksgiving after my rheumatoid arthritis diagnosis, I have changed the way dinner is done. Since RA, I have asked that our guests prepare one of their favorite side dishes and dessert. Everyone has happily brought their special recipes and it leaves me with less work to do. Tuesday and Wednesday before Thanksgiving I do any baking that is my responsibility. On the Wednesday before Thanksgiving I do any prep work for the next day such as cutting celery and onions for the stuffing and peeling in cutting the squash. I just keep the prepared items in zip tight bags and it makes the few things I have left to do on Thanksgiving go a lot faster.
On Thanksgiving morning I prepare the stuffing and stuff the turkey before putting it in the oven. There have been years that I was completely unable to lift the turkey in and out of the oven. I found that using my wrist guards helped support my wrists while lifting the turkey. There was one year that even with the wrist guards on I could not trust the strength in my hands to get the turkey in the oven. That year I had to ask for help, there was no other option. The only vegetable that I don’t prepare ahead of time is the potatoes. So all I have to do Thanksgiving is the turkey and peel and cut up the potatoes for mashing. If my hands are bothering me I am not shy about asking for some help from my family. The rest of the meal has been prepped so all I need to do is put it on the stove or pop it into the oven.
The first few years after my rheumatoid arthritis, when I tried to prepare for Thanksgiving in just the days before or even the week of, I found that I was too sore and tired to enjoy the day. In giving myself an extra week to prepare for Thanksgiving dinner I am not feeling stressed which will make my RA worse and I haven’t overdone it which will make my RA worse and I can concentrate on my family and friends and showing my gratitude for them.
I hope that everyone celebrating Thanksgiving has a wonderful day with their friends and family!
Tags: arthritis, cooking, dinner, prepare, RA, rheumatoid, rheumatoid arthritis, Thanksgiving, turkey
Posted in Autoimmue Disease, Coping, Decisions, Good News!, Lesson Learned, Rheumatoid Arthritis RA, Solutions, Spirit | 10 Comments »
Wednesday, October 21st, 2009
Do you feel really comfortable with your current rheumatologist? Are you able to discuss all of your questions and concerns with your rheumatologist? If the answer to these questions is no; you are not alone. A surprising number of patients report that they fell rushed when they visit the doctor’s office and often leave without understanding what was discussed during the visit. It is important to be able to communicate with your physician at your visit. Your health is at stake.
It is a good idea to make sure that before your next visit you are prepared. If you have blood work that is due near the time of the appointment make sure it is done and the doctor has had the opportunity to look at the results before your appointment so that you can discuss the results while you are there. Make a list of questions/concerns for the doctor. Prioritize the list so that you cover the most important questions first. If you do not completely understand the doctor’s response to your question, let them know. Don’t be afraid to ask them to clarify something for you. If the doctor wants follow up testing or changes in medication, make sure you understand any side effects and/or necessary information you may need ( ie. time of day to take meds or have test done, fasting, non fasting, etc…) before you leave the office. If you feel as though you did not have all your questions answered at the visit; don’t be afraid to call the office and ask for the doctor to call you back when he/she is free to answer your questions.
If you have done all this and still do not have your questions answered, your concerns addressed, or if you feel you are not being heard, and are rushed, it may be time to find a new doctor! My first rheumatologist was an extremely intelligent doctor, and a professor at an Ivy League University but we did not communicate well with each other. After interviewing several other doctors I found a rheumatologist that is the right fit for me. I am comfortable discussing all my issues with my physician and I always feel like her focus is on my wellness at all times. My questions are always answered, I never feel rushed and I always feel that my health is of paramount importance to her. It may take some time to find the right rheumatologist, but it is well worth the effort.
Tags: annual routine, arthritis, arthritis pain, health, inflammation, joint pain, RA, rheumatoid, rheumatoid arthritis, Rheumatoid Arthritis RA
Posted in Autoimmue Disease, Coping, Decisions, Lesson Learned, Rheumatoid Arthritis RA, Solutions, Wellness | 2 Comments »
Monday, September 28th, 2009
Over the past several months I have received comments that I think need to be addressed in a much longer format than a comment response. The comments are related to treatment options for rheumatoid arthritis and which treatment is best.
We are fortunate enough to have many options available to us today to manage our rheumatoid arthritis (RA). Traditional medicine offers everything from NSAIDs (Non Steroidal Anti-Inflammatory Drug) like Advil and DMARD s(Disease Modifying Antirheumatic Drugs) such as Plaquenil, Arava, Methotrexate, Gold, and Cyclosporine to biologics like Remicade, Enbrel and Humira. There is a growing trend toward alternative medicine as a solution to deal with this disease. Each option has its benefits, risks and side effects.
NSAIDs are a class of drug that are used primarily to treat inflammation and mild to moderate pain. These medications vary in potency and include the brand names Advil, Motrin, Naproxen, Anaprox and Celebrex. Between 10% to 50% of patients are unable to tolerate NSAIDs because of their side effects. These side effects include upset stomach, stomach pain, and diarrhea. About 15% of people on long term NSAID treatment develop ulcers of the stomach and/or the duodenum.
DMARDs cover a variety of different of drugs. Anti-malarial drugs such as Plaquenil (Hydroxycloroquine) are considered a DMARD and were initially used to treat malaria. It was discovered to help arthritis when patients noticed an improvement in their arthritis symptoms while taking plaquenil for malaria. Plaquenil effects the immune system but doctors do not know how it works for rheumatoid arthritis. Arava (leflunomide) interferes with genes in developing immune cells. When taking Arava, liver monitoring for toxicity is required. You should not take this drug if you are planning to get pregnant or are currently pregnant because of birth defects. The most common side effects for patients taking Arava are rash, nausea, hair loss, liver enzyme elevation and anemia. Methotrexate is a chemotherapy drug that initially was used to treat acute leukemia. Methotrexate (MTX) has become the gold standard for treatment of rheumatoid arthritis (RA). Methotrexate interferes with the growth of cells in the bone marrow. The most common side effects from methotrexate include stomach upset, hair loss, diarrhea, and mouth sores. Folic acid is given while taking this medication to reduce the side effects. Liver function monitoring is necessary to watch for toxicity. Methotrexate should also not be taken if you are pregnant or planning to get pregnant. Injectable Gold has been shown to improve symptoms of rheumatoid arthritis however toxicity is common and constant monitoring in necessary. Side effects include rash, diarrhea, conjunctivitis and marrow suppression. Cyclosporine is a medication that is used primarily for the prevention of rejection of transplanted organs. It is effective for the treatment of rheumatoid arthritis because it stops an overactive immune system from attacking the joints. Side effects can be severe and include hypertension, kidney problems, headache, nausea and diarrhea.
Biologic response modifiers (biologics) are the latest treatment option for rheumatoid arthritis pain and inflammation. They work by blocking the tumor necrosis factors(TNF) components of the immune system. People with RA have too much TNF in their bodies and it overwhelms the immune systems response to inflammation. Biologics such as Enbrel, Remicade and Humira are genetically engineered proteins that binds to and deactivates the TNF molecules before they can do damage. The risks in taking this class of drug include serious infection including sepsis and tuberculosis, nervous system diseases such as multiple scholosis, allergic reactions, lymphoma and congestive heart failure. Because these drugs are fairly new their long term side effects are not known.
There has been much debate on the effectiveness of complimentary and alternative treatments options for rheumatoid arthritis. These treatments include GLA (Gamma Linolenic Acid), DHA (Docosahexaenoic Acid, Tai Chi, herbal supplements and acupuncture. There are many more complimentary and alternative treatment options that will be discussed in future posts.
GLA (Gamma-linolenic Acid) is an essential fatty acid found primarily in plant oils. It is found in borage oil and black currant seed. In preliminary testing it has shown to reduce morning stiffness and swelling however studies have been small to date and additional research would provide more information. DHA (Docosahexaenoic Acid) is an omega 3 fatty acid found in cold water fish. Several studies have shown that DHA reduces inflammation but not the progression of the disease. The movements of Tai Chi improve strength, flexibility and balance. There is no indication that Tai Chi effects the progression of rheumatoid arthritis. Acupuncture in thought to stimulate the release of chemicals called endorphins that block pain. Acupuncture is very effective in treating chronic pain like that in rheumatoid arthritis. The list of supplements as an alternative solution to conventional medicine for the treatment of rheumatoid arthritis include vitamin E, MSM, copper, manganese, vitamin C, selenium, zinc, bromelain, ginger, turmeric and boswellia. These alternatives have proven to help in inflammation and in some cases joint damage.
The benefits of using conventional medicine for the treatment of rheumatoid arthritis are that knowledgeable doctors using this method are readily available and the medications work for many people. These medications have significantly improved the lives of many with rheumatoid arthritis. The downside to this treatment option is the side effects can vary from mild to severe and some long term effects are not even known.
The benefits to choosing an alternative medical solution for the treatment of rheumatoid arthritis is that the side effects to these treatment are few and are less damaging to the body. The disadvantage to complimentary and alternative treatments are that finding a qualified medical professional that can help guide you through all the options available can be a challenge and there is debate on whether or not they can help with joint damage.
Ultimately the choice for a treatment option is a personal one. What matters is what works for you. Everyone has their own body chemistry. What works for one person may not work for another. The advantage that we have today is that we have options, many options, and if something is not working for us we can try in another direction until we find our own solution. It is not up to me or anyone else to decide what is best for you and your body. Trust yourself to figure out what is best for you.
Tags: acupuncture, advil, ananprox, anemia, Arava, arthritis, black currant oil, bone marrow, borage oil, boswellia, bromelain, celebrex, chemotherapy, congestive heart failure, copper, damage, DHA, diarrhea, DMARD, Enbrel, folic acid, ginger, GLA, gold, hair loss, headache, Humira, hypertention, immune system, joint, kidney, leflunomide, leukemia, liver enzyme, lymphoma, m, manganses, methotrexate, MSM, multiple sclerosis, naproxen, nausea, NSAID, plaquenil, pregnant, RA, rash, Remicade, rheumatoid, rheumatoid arthritis, selemium, Tai Chi, toxicity, tuberculosis, turmeric, vitamin C, vitamin E
Posted in Autoimmue Disease, Coping, Decisions, Diet/Nutrition, Good News!, Health/Fitness, Lesson Learned, Rheumatoid Arthritis RA, Solutions, Wellness | 10 Comments »
Friday, September 11th, 2009
There are many factors to consider when choosing a pet. Having rheumatoid arthritis (RA) weighs heavily in the decision making process. As a animal lover and owner of many dogs over the years, temperment, breed and animal size are very important issues to consider before making a commitment that will last many years.
Max
The first step in finding the right dog for you is research. Go to the local library and read some books about the type of dog you may be interested in adopting. Research online; the American Kennel Club (AKC) and DogBreedInfo.com both have good sites with plenty of information to help you choose the dog that is right for you. If you are interested in a shelter or rescue dog go to your local shelter and ask a lot of questions. Spend some time with the type of dog that you may be interested in before making the committment.
Daisy
Some of the factor that you may want to consider are:
- Size: I am speaking from experience here. I have a large golden retriever(Max) and a small silky terrier (Daisy). They are both good dogs and very loveable, but Max can’t help his size and when he gets excited he has been known to hurt me inadvertently. I can’t count how many times his 80 pound self has stepped on my inflamed feet, or he has come bounding by and run right into a sore ankle. My golden retriever is loyal and kind but he can’t help his size and that is a factor with my rheumatoid arthritis (RA). The little silky terrier is easier when negotiating small spaces and even though she has also stepped on my sore feet she is so small it didn’t hurt at all.
- Space: How much space does your potential pet need and how much space are you able to provide for it is another important factor. Max takes up a lot of space and he frequently wants to be near me. This means that on many occasions just trying to navigate around him can be a challenge. When I am flaring every extra step I have to take can be painful and the extra ones need to avoid the sleeping giant can be hard.
- Energy: Some dogs have boundless energy, others like to lay at your feet. My silky terrier Daisy is a bundle of energy. She runs all day long, she always has something to investigate. At the end of the day she rests (usually just collapses from exhaustion). It is important to factor in that this type of dog needs a lot of exercise and that may mean walking this dog plenty. (As a side note, we have an ample yard and an invisible fence so that my dogs can run at will and walking them is a luxury when I am up to it.)
- Cost: Dog ownership is an added financial burden that you need to consider. Veterinary costs can be expensive and regular feeding and mantenance costs can add up.
- Puppy vs. Dog: Puppies are cute and cuddly but they are baby dogs and require much more attention that full grown dogs. The benefit to a puppy is that they haven’t learned any bad habits yet, but house training them can be a challenge when you have rheumatoid arthritis (RA) because a quick dash to get the puppy out may not be an option if you are in the middle of a flare.
Dog ownership has many important benefits. Dogs can lift your mood, decrease your blood pressure and reduce stress. They are always happy to see you and give unconditional love. They can be trained to be a great help as well although mine are just really good at giving love.
Tags: AKC, American Kennel Club, arthritis, breed, dog, DogBreedInfo.com, flare, golden retriever, inflamed, RA, rheumatoid, rheumatoid arthritis, silky terrier, stress
Posted in Autoimmue Disease, Decisions, Lesson Learned, Rheumatoid Arthritis RA | 11 Comments »
Tuesday, September 8th, 2009
Every time I turn around lately someone is talking about the swine flu (H1N1). There have been outbreaks on college campuses around the United States and with kids back to school everyone is a little nervous about what germs they may bring home. The vaccine for the H1N1 Swine flu won’t be available until October and the seasonal flu vaccine has only been available to selected clinics and doctors so far. It is entirely possible that even with the vaccine, many people will catch the flu.
Let’s face it even if you do everything right there is a chance that you can get swine flu or the seasonal flu. Hand washing seems to be the best line of defense and my kids tell me that there are hand sanitizer dispensers in every classroom. The local schools seem to be doing everything they can to prevent an outbreak, but unless you are living in a bubble there is still that chance that you or the people that surround you will become sick. It is entirely possible that many will come down with swine flu before the proper agencies are even able to get the vaccine to the people that would benefit from it most. So I thought I would talk about what to do if you actually come down with this strain or any other strain of flu.
Firstly, you are not going to know if you have H1N1 or the regular seasonal flu. The symptoms of this and any other strain of flu virus are sudden onset of cold like symptoms. Fever (over 100 degrees), chills, headache, dry cough, runny nose, lethargy, body aches are the most common symptoms but sore throat, nausea, vomiting and diarrhea have also been reported. If you or anyone that you are living with is experiencing these symptoms, get to the doctor right away.
The sooner you see a doctor the better. Anti-viral medications such as Tamiflu must be taken within 12-48 hours of the onset of symptoms to be effective. Tamiflu can help to reduce the duration of the symptoms of the flu up to 30%. Tamiflu is also prescribed for the prevention of the flu if you have been exposed to someone who has been diagnosed with the flu. This is particularly important if you have a compromised immune system.
If you are unfortunate enough to catch the swine or seasonal flu, there are many over the counter flu remedies that may ease your symptoms. Make sure to check with your doctor or pharmacist before starting any over the counter remedy because it may interact with any prescription drugs you are taking.
The most important thing you can do for yourself when sick with the flu is get plenty of rest. Having experienced the flu first-hand I can tell you that your body isn’t really going to want to do anything but rest. Make sure to get plenty of fluids when dealing with the flu because dehydration will only make you feel worse and may slow down the healing process.
If your symptoms do not improve or start to get worse, see a doctor right away. Many people with autoimmune diseases have a more difficult time fighting the flu because of the treatments for their disease often weakens their immune system. If you are experiencing shortness of breath, having difficulty breathing, experiencing chest pains as a result of coughing or are coughing up yellow, green or bloody phlegm get to a doctor right away. These may be symptoms of a much more serious condition.
Secondary infections as a result of the flu include sinus infections, bronchitis, ear infections and pneumonia. Some secondary infections may result in hospitalization. It is vitally important to listen to your body and if there is any indication that you are not improving call the doctor.
It can take up to two weeks for a healthy adult to get over the flu. If your immune system is compromised it probably will take longer. Most people with the flu recover completely within a reasonable amount of time, but there may be lingering symptoms such as a cough and general weakness. It is important that if you are unsure about any symptoms that you are experiencing that you contact your doctor and do not hesitate. It is much better to ask to see the doctor and have it be a relatively small issue than hold off and wait to see a physician and have it be much more serious and harder to treat.
Tags: autoimmune, autoimmune disease, campus, chest pain, chills, classroom, college, cough, dehydration, diarrhea, difficulty breathing, disease, doctor, dry cough, fever, flu, flu season, germs, H1N1, hand sanitizer, headache, kids, lethargy, nausea, outbreak symptoms, phlegm, remedy, runny nose, school, sinus infection, swine, swine flu, Tamiflu, United States, vomiting, vomitting
Posted in Autoimmue Disease, Decisions, Health/Fitness, Lesson Learned, News, Rheumatoid Arthritis RA, Solutions | 5 Comments »
Tuesday, September 1st, 2009
I try to look at every obstacle or challenge as an opportunity to learn something about myself. My hope is that I can somehow gain something positive from every experience good or bad. This latest challenge has been no different. What I learned this time is that I need to be grateful for every moment that I am upright and not sick in bed.
I have spent the better part of this summer in bed. I started the summer with most of my family (myself included) sick with the swine flu. By the time I was finishing up the antiviral meds for the swine flu I found out that I had lyme disease. This meant 6 weeks of antibiotics after 3 weeks of antiviral medication. Both medications require that I stop taking my RA meds to work effectively and get rid of both the flu and the lyme disease.
The lyme disease was much more difficult than I had anticipated. It left me feeling more sick than I had ever been at any point in my life ever. It felt a little like the flu on steroids. Fever, chills, body aches and severe muscle pain just to name a few of the rather nasty symptoms I was experiencing with lyme disease.
There were plenty of times during this period when I wondered which disease was causing the pain. Was it the rheumatoid arthritis (RA) or was it lyme disease? It was a very difficult time. I never knew from day to day how I would feel or if it would be better or worse than the day before. Many times one disease would be better and the other worse.
Right now I am just dealing with a flare. There was a time in my life when I thought that dealing with a flare was the worst thing I could experience. Turns out that is not true. A flare is awful. A flare is exhausting and very painful. But unfortunately I have learned that some things can be worse than a flare. Being sick with another disease while in the midst of a flare is much worse. I have had only a small glimpse into what others with multiple autoimmune diseases go through and I admire each you. Dealing with one disease is hard enough.
I never thought that I would be at a point when I would say that it’s only a flare. I am not trying to minimize a flare but that is how I feel right now. It is just a flare and I can handle a flare. I know what to expect with a flare. I know what my body needs and what it can handle during a flare. I’ve been down this road before. It is familiar territory.
For now, I am drinking plenty of water, eating a great deal of anti-inflammatory foods, getting plenty of rest and grateful that the only thing I need to deal with right now is this flare. There are no other health issues, just the flare. While this means that I will be in bed more than I would like, I am still able (although rather stiff and sore) to get out of that bed. For that I am grateful.
Tags: anti-inflammatory, antibiotics, antiviral, arthritis, flare, lyme, lyme disease, RA, rheumatoid, Rheumatoid Arthritis RA, sore, stiff, swine flu
Posted in Autoimmue Disease, Decisions, Lesson Learned, Rheumatoid Arthritis RA, Spirit | 7 Comments »
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