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.
As the end of this year approaches I can’t help but look back and reflect on all that has happened. I have experienced some highs and quite a few health related lows this year. I would much rather focus on the good things that 2009 brought.
This was the year that LivingRheum.com was born in earnest.
LivingRheum.com has enriched my life in ways that I never could have expected. I am still in awe that anyone found my blog to read it in the first place. The fact that so many people have come here and read my words and shared their experiences has been such a blessing. I am so grateful to have met so many amazing people.
Just knowing that there are so many good people in this world who completely understand how it really feels to have rheumatoid arthritis and the challenges that I face with this disease, has made me feel so less alone in this challenging journey. I hope that in some way I have been able to give back all that I have gained.
I want to wish everyone a happy, healthy new year filled with much happiness and mobility. I am looking forward to what the new year will bring. I plan to use my energy to focus on the joy. I find the more I focus on the joy, the less I focus on the joints.
I wanted to take a minute to wish everyone a healthy, happy holiday. I hope that everyone has the Merriest of Christmas’ and the Happiest of Hanukkah. I plan on spending a quiet holiday with the people that mean the most to me in this world.
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.
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!
Samantha shares her story of rheumatoid arthritis. She talks about how the disease changed her life and how she adapted to the changes that it brought her. It is an honest story of what it can be like living with rheumatoid arthritis. I could relate to her story on many levels.
Sunday October 11, 2009 marks the annual Iota Sigma Chapter of Alpha Omicron Pi Run for the Roses 5K and 10K road races to benefit arthritis research. The perennial event in Ames, Iowa is open to all ages and running ability. All proceeds from this race go directly to arthritis research grants.
Alpha Omicron Pi Sorority is an international women’s fraternity with 187 collegiate chapters and 320 alumnae chapters in the United States and Canada. Since 1967 the Alpha Omicron Pi Sorority has been supporting arthritis research. To date the Alpha Omicron Pi Sorority has donated over $1,500,000.00 in grants for arthritis research.
Through the sponsorship of area businesses for this run, the sorority has annually raised funds for arthritis research. This year the Run for the Roses road race will be held on October 11, 2009 and my twitter friend Mike Brekke will once again be one of the participants. It was through Mike that I heard of this amazing group of women that have been supporting arthritis research for over 40 years.
I would like to thank all the participants, sponsors and most of all the Alpha Omicron Pi Sorority sisters for all their hardwork and dedication to a cause that may one day help me and the millions of others that are effected by this painful disease. I am truely grateful for all that you have done.
All information is intended for
your general knowledge only and is not a
substitute for medical advice or treatment.
You should consult your physician for any
health issues.
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