Lately I have been one day up, one day down. One day I am experiencing very little stiffness and pain and the next day I am feeling dreadful.
I have been taking a close look at my diet and how it is effecting how I feel. I know that there are certain foods that without a doubt have a direct relationship to the amount of inflammation that I am experiencing. Within an hour or so of eating chocolate I start to swell. The same holds true for dairy products. Sugar seems to be an issue for me as well. I don’t know if I need to avoid all sugar altogether or if there is a certain threshold that once I go over that level there is a problem. I don’t know if it is just refined sugar or if natural sugars will give me the same trouble. I know that things that have a high sugar content cause me trouble. The good news is that since I have stopped taking the methotrexate, it is easier for me to tell which foods are causing the inflammation. It was as if the medication was masking the effects that food had on my inflammation. It has been a game of hit or miss on what my body will tolerate and what it won’t. I imagine that this will take some time to find every food that is causing me trouble.
It is hard to plan my life right now because I really don’t know from day to day how I am going to feel. I am keeping a food journal and each day I write down everything that goes into my body and how I am feeling physically. It is helping to make it easier to pinpoint what food is effecting me so that I can avoid it in the future. I have done a lot of reading on the subject and I am very hopeful that once I get a handle on the foods that trigger inflammation for me I will be able to manage the disease much better.
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 have not written a post in quite some time now. I have been going through some physical challenges since this summer. It seems that lyme disease does not want to let go of me right now and that is complicating the rheumatoid arthritis. You cannot treat both diseases at the same time so something has got to give and it has been and will continue to be the RA treatment until I am convinced that the lyme disease is gone for good.
I have spent the better part of the past 4 months without the RA treatments that in the past were working for me. So the challenge right now is finding some natural ways to deal with the inflammation and pain of rheumatoid arthritis without it countering the lyme treatments. I am trying right now to find the right combination of diet and supplements that will give me the best results.
This is a new development for me. Over the past 8 years I have never gone without medication for such an extended period of time. It has caused me to question a great many things. In the beginning I was mostly afraid. I almost feel like the medication was somewhat of a crutch for me. I am not saying that we shouldn’t seek out medication for RA. What I am saying is that maybe I didn’t look into some of the other options available to me because I didn’t have to. The medication worked so well that there really wasn’t any need to look further.
I feel like I am embarking on a new direction for my health. It is a little scary for me. There is a certain amount of comfort that goes with handing over the control to the doctor. But now that I have made the decision to take an alternative route, I am feeling empowered that I am in control of my own health and I am hopeful that this will be the right decision for me and my family.
I am hoping that I will be able to post more in the future and keep you up to date on my progress. But for now I am trying to focus on my health and healing and trying to take each day as it comes. I am truly grateful to everyone who has expressed their love and support. It means more than I can say.
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.
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.
The other day I was driving to have yet another blood test done and my thought was” I really just don’t have time for RA right now”. How ridiculous is that! As if I really had any choice about having this disease and I could actually just put off having it for a while ’til I had time to deal with it. My next thought was “This disease is really inconvenient.” I had to laugh at that thought, but is so true. RA takes me away from what I would rather be doing quite a lot. Between the blood work and the diagnostic test and the doctors visits, it seems like every time I turn around I am interrupting something that I would rather be doing to deal with a RA related appointment.
I did a little math. If everything is going well and no additional testing is needed I visit some health related office 34 times a year. That is almost 3 times per month. No wonder why I feel like RA is getting in the way sometimes. It is.
I started to try to remember what life was like before rheumatoid arthritis . I was thinking what I could be doing instead of having more blood work done. And then I thought, STOP! What was I doing. This is not going to help me. Yes, RA is inconvenient. Yes, rhematoid arthritis interrupts many aspects of my life. But this is the life that I have now. These are the cards that I have been dealt. This is my reality and like it or not that means that I need to schedule in more health appointments than most people. Is that the worst thing in the world? Absolutely not.
So yes I am inconvenienced by rheumatoid arthritis. But I still wake up every morning and I spend my every day with the people that I love most in this world. Because of RA our lives are different than we had planned. That does not mean that our lives are better or worse than we had planned, it just means that our lives are different.
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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