Lesson Learned Category
Monday, February 15th, 2010
I haven’t done a great many posts on tips lately. Mostly it is because I am doing all I can to get through each day. I don’t have a lot of energy and what I do have is shared with my family. I turned a corner the other day and I wanted to share what happened.
My knees have been causing me so much pain lately that a restful night’s sleep has evaded me. If I don’t move in bed I start to cramp up and if I try to move I am in a lot of pain. So needless to say every 30 minutes to an hour I am awake.
I was lying in bed the other day and I was contemplating my current situation. I was going over in my head what was going on in my life. I considered the amount of stress I have been under and how I have tried to deal with it. I was also evaluating my diet and trying to figure out what might be causing the increased inflammation and pain and what I was going to do about it. There are so many variables that can effect how I feel it’s hard to pinpoint which part of my life and routine is causing all this pain. I needed to figure out if anything I was doing was having any impact at all. While I was lying there pondering all these factors all I could think of was the only time I am not in pain is when I am still.
I was irritated that in being still the world was going on without me. All I could think was I can’t live like that either, spending the entire day not moving to avoid pain is not really a solution to my problem. Then it hit me, maybe I was looking at this all wrong. Maybe the universe was trying to tell me that I needed to be still.
I sat with that thought for a while. Maybe I needed to stop fighting the stillness and just for a while embrace it.
So I did.
I welcomed the stillness in my body and my mind. I stopped fighting and was simply still.
I don’t know that if in that moment of acceptance my body and mind connected, but I do know that when I woke the next morning I had slept the entire night without waking from pain. Since then I have been experiencing significantly less pain and inflammation. I am not pain free nor am I inflammation free but in the days since I feel like I am at a manageable level.
Before this realization I was really afraid that I was either going to have to go back on medication to control the pain and inflammation or I was going to have to live with things the way they were. I wasn’t really sure that I would be able to do that. All that pain, takes it’s toll on my spirit. All that pain takes it’s toll on my family.
I had gotten away from meditation for a while. Life had gotten busy. Priorities changed.
I won’t let that happen again. I need to take the extra time for the stillness. In embracing the stillness, my body has thanked me.
Tags: arthritis, body, diet, inflammation, Meditation, mind, mind-body, pain, RA, rheumatoid, rheumatoid arthritis, stillness
Posted in Autoimmue Disease, Coping, Decisions, Good News!, Health/Fitness, Lesson Learned | 8 Comments »
Thursday, January 21st, 2010
The past 6 months have been somewhat like a bad dream. I never could never have imagined being sick for this long with so many different ailments. I can’t help but wonder if all the years on methotrexate had such an effect on my immune system that everything kind of shut down for a while. With all this down time I have had the opportunity to learn somethings about myself. I thought I would share some of what all this sickness has taught me.
- Trust your instincts. When two of my doctors had conflicting opinions on whether or not I had a second or continuing Lyme infection I should have trusted my instincts. I could have saved myself valuable time and pain and not have subjected myself to way too many diagnostic tests had I just trusted my gut. I know my body better than anyone else and I knew that I still had Lyme Disease. I shouldn’t have allowed my rheumatologist to talk me into more tests to prove that her opinion was right when I knew deep down inside all I really needed was another treatment of antibiotics. When I finally got the antibiotics was when the symptoms went away and I started to feel better. Lesson learned. Again. I hope this time it sticks.
- Lyme Disease is something to take very seriously. I have had Lyme Disease in the past. I thought that I knew and understood what this disease could do. I could not have been more wrong. I have never in my entire life felt more physically ill than I did with Lyme Disease. I can’t say whether or not the Rheumatoid Arthritis (RA) had an effect on the severity of the Lyme Disease but I know that the treatments for the RA had an effect on how well my body was able to handle Lyme Disease.
- I need to nourish my body and my soul. I have always been the one who puts everyone’s needs before mine. It wasn’t a conscience decision, but none the less other things took priority in my life. Now every day I am slowing down and taking time to do things that nourish my soul. Things that bring me joy nourish my self. I find that I have more patience and energy for other things after making my self a priority. Before I put anything into my body I am asking myself will it nourish me or fill me. They are two very different ideas. I have tried to eat responsibly in the past, but I haven’t always looked at what I am putting into my body as nourishment as opposed to something that will fill me up.
- Don’t be afraid to ask for help. Being an independent person and a bit of a control freak I frequently would rather do something myself than ask for help. Part of me just didn’t want RA to get the best of me. I felt like it was a bit of a battle of wills. I wasn’t going to let RA take over my life completely, I could do most things myself and I hated to ask anyone for help. Being as sick as I have been, I have had no choice but to ask for help. There were days when getting out of bed to go to the bathroom was an ordeal. An extremely painful ordeal. It was simply impossible not to ask for help with some of the most basic of needs. I discovered that the world did not end and it was okay if things were not done “my way”.
- A clean is nice but really not all that important. I used to care very much about how clean my house was. I felt that how my house looked was a reflection on me and how I cared for my family. I know that sounds a little nutty but that is how I felt. I really felt like I could not physically do a great many things anymore but I could take care of my family and a clean house was part of that. Of course now looking back I can see how crazy that whole idea sounds. My house currently is picked up. No one is going to trip over anything in my house, but it is a far cry from clean and I really don’t care. I could spend the next few hours cleaning, or I could spend the next few hours playing with Kevin or reading a good book. Now I choose something that will fill me up instead of depleting my resources.
- Connecting with other people that know and understand what it’s like to have RA is important. Knowing that I am not alone in the day to day challenges that this disease brings has helped me in so many ways. There is comfort in knowing that there are people out there that completely understand what I am going through. I am very grateful to all the new friends that I have found here and for their kindness and support.
Tags: ailments, antibiotics, arthritis, body, diagnostic test, disease, infection, lyme, lyme disease, methotrexate, nourish, RA, rheumatoid, rheumatoid arthritis, rheumatologist, sick, soul
Posted in Autoimmue Disease, Coping, Decisions, Lesson Learned, Rheumatoid Arthritis RA, Solutions, Spirit, Wellness | 10 Comments »
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 | 9 Comments »
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