Hello all... I am new to the group, but sure did need to find others that understand what I am going through...when we say that we have Sjogren's or other immune diseases.I have been sick for about 10 years and I was diagnosed with Lupus, Sjogren's and ILD Interstitial lung disease the summer of 2013... I am scared and feel very lost when I was told that I had all of these things... I have three teenagers and have been married for 23 years and my life most days...feels like I am just getting by! I went from being a very active person...working as a school teacher, going to school and running around doing everything that a mom does! To just getting by...I now work as a substitute teacher when I can or when the fatigue is not so overwhelming (most days it is), pain like the flu and breathing problems... I am sorry for rambling on and on...but I guess that I need to hear that I am not the only one that is scared and unsure of their future! Hugs to all
Have you tried changing your diet? It may help to eliminate gluten, dairy and processed foods and eat lots more vegetables.
I can empathize. I have all that you mentioned and 3 more (too many to mention here). At the moment I'm pretty well regulated, but still experience the fatigue, aches, mouth sores, no saliva and the like. Actually of all that I have the Sjogrin's plagues me the most. Sometimes I'm scared and sometimes I'm not. You have tons of reading to do in order to educate your self about these mean diseases. There is no quick easy way to handle all of this. The reading has helped me manage and this website with some dead on information. The web is a good place to start.
You got to hold on.
When I was first diagnosed I was very scared about what my future would hold. Sjogren's is still fairly new to me. . . I was just diagnosed with that a year plus ago, although that is just when things got bad enough to be diagnosed.
As you start medication, things should start to come under some control. The damage that's done is done, but you can stop things from progressing further. Allow time for medications to work, and also for you to adjust to these diagnoses. It's a really big deal.
I am sure that most of us have days like you, so don't worry about the ramblings, even if it just makes you feel better then we can all take it! Good advice about your diet, as it can help a lot, certainly has done with me the only problem is that I do have naughty days when I just cannot resist that bar of chocolate, or whatever it may be. Doesn't help that living in France I am tempted by some gorgeous food, only then to come back down to reality! Scared and unsure is normal I am guessing, anyway, I just get by, by living each day as it comes. I find it is the only way, if I dwell or think too hard/much about what may happen, what may be around the corner then I cannot function at all, and there are certain things that have to be done, dealt with, stressed about in general life!
I agree that medications may take a while to kick in but should help some. It is scary! Particularly at the beginning. I try not to worry about the future too much, for fear I will miss today. Listen to your body and take care of YOU. That is kind of hard for mom because we are used to being the one providing care to others. Good luck!
Thank you so much for all of the wonderful information...It is funny that you say vitamin D deficiency...just last year I started getting vitamin D shots, because of vit D level was low...and then after about 6 months, I was able to go back to taking the vit D pills...had no idea that the levels can change over just a few months or seasons! I will keep after my doctor about checking me for this. :) Also the folic acid information was great...I will definitely pick some up...because I do have the nose and mouth sores all of the time. Thank you also for the info about ILD....this one really scares me, because of the wheezing and trouble breathing. I do us an inhaler now, but it doesn't feel like it is enough.... :0
Thanks again for encouragement! Hugs
Kaz said:
Hi, sorry to hear you are dealing with all this but we all understand as a lot of us are dealing with multiple issues. I have four main things going on - Mutliple Sclerosis, Sjogrens, Glossopharyngeal nueralgia (probably linked to MS) and another rare issue called super semicircular canal dehiscence - not a fun one to deal with but that's life!
Diet is very important. When it comes to Lupus you should ensure you have your vitamin D and B12 levels checked as generally these are deficient with autoimmune diseases. There have been studies and currently more research into the role vitamin D plays in immune function, inflammation and progression. Studies so far have indicated lower levels of vitamin D correlate to more disease activity and worse progression.
So do consider getting tested. Optimal levels advised by a leading researcher for MS (and this also is for other autoimmune diseases) is a level of around 150 nmols up to 300nmols but above 300 is not recommended. 150 nmols is a good level and you should notice reduction in flare ups.
When taking vitamin D3 (do not take D2) each 1,000 iu daily will raise your blood level approx. 25 nmols, so it's pretty easy to work out roughly how much you would need after you get your baseline level. Also getting bloods tested every 3 months is advisable as levels fluctuate with seasons. B12 is also very important as a lack of it can cause symptoms similar to what can experience in our actual autoimmune diseases. So do consider having that checked. One can supplement with B12 as it is a water soluble vitamin, so we pass any excess out in our urine.
There is a book called Overcoming Multiple Sclerosis by Professor Jelinek which contains great information about diet and also supplements and all the latest research. These diets and supplementation cross-over for other autoimmune diseases, so not specific just for MS as with all autoimmune diseases they are driven by inflammation in the body.
http://www.overcomingmultiplesclerosis.org/Book/
Another really good book is called the Vitamin D Cure by Dr James Dowd. Excellent book. I have the 2007 edition but he has a new one out. It contains a lot of excellent information on vitamin D and autoimmune disease, and especially looking at reducing inflammation in joints as well as body.
http://www.drjamesdowd.com/
Here is an article about disease activity and Lupus and Vitamin D. Lupus Foundation of America have summariesed the findings for people in this link. However, if you would like to see the abstract from the article click on the name of the research paper after you click onto this link.
You can also obtain good information about Lupus from this link too. As to the right you will see a F & A section. You can also sign up to receive the latest information in regards to what is happening in research for Lupus.
http://www.lupus.org/research-news/entry/low-levels-of-vitamin-d-ar...
Also consider taking high strength fish oil. Fish oil has two components - EPA and DHA. To reduce inflammation in the body to settle autoimmune activity, plus also inflammation of the joints, the EPA content needs to be 1 gram or more. However, ensure that you are allowed to take this if you are currently on medications as one should not take fish oil if they are on antiplatelet or anticoagulant drugs. So always ask your doctor first whether there would be an issues with fish oil.
Diet is important. Sugar is bad, and too much red meat is also not good as it has an inflammatory nature. A lot of people benefit from vegan or vegetarian style diets but these are not always possible for some people. So cutting back on fast foods, over processed foods, soft drinks etc., will help.
Also it is important to learn as much as you can about your conditions as knowledge helps you to better understand what you need to do in order to best manage your symptoms.
Here is a link on ILD. Not sure how much you have read about this but it is linked to connective tissue disease which Lupus is.
http://www.racgp.org.au/download/documents/AFP/2010/March/201003war...
Another link:
http://www.mayoclinic.org/diseases-conditions/interstitial-lung-dis...
Here is a link on Sjogrens
http://www.arthritisvic.org.au/Conditions-and-Symptoms/Sjogrens-Syn...
http://www.lupusnsw.org.au/sjogrens-syndrome/signs-and-symptoms-of-...If you suffer from mouth and nose ulcers, taking folic acid at the first sign of these helps to clear them up. I actually take folic acid daily and it helps a lot. My neurologist first told me to take this daily for my MS and later I learned it also is effective for ulcerations of the mouth and nose - another neurologist informed me of that.
Remember knowledge is power and we are all here whenever you would like to ask questions or even to rant/rave etc. Sharing halves a problem.
Hello mcspires...Thank you for the encouragement...I will do my best to listen more to my body and stop when I need to. It helps to know that others really understand what I am going through (although I wish no one had sjogren's). Thanks again and take care.
mcspires said:
I agree that medications may take a while to kick in but should help some. It is scary! Particularly at the beginning. I try not to worry about the future too much, for fear I will miss today. Listen to your body and take care of YOU. That is kind of hard for mom because we are used to being the one providing care to others. Good luck!
Hello Vittel: Thanks for not minding all of my ramblings.. :) I will try to work on improving my diet...and try not to worry about the unknown! I do feel like I just live one day at a time....and rest when I need to and do what I can to get through the day...I guess that is all that any of us can do.. Hugs and peace to you and thanks again for your encouragement!
vittel said:
I am sure that most of us have days like you, so don't worry about the ramblings, even if it just makes you feel better then we can all take it! Good advice about your diet, as it can help a lot, certainly has done with me the only problem is that I do have naughty days when I just cannot resist that bar of chocolate, or whatever it may be. Doesn't help that living in France I am tempted by some gorgeous food, only then to come back down to reality! Scared and unsure is normal I am guessing, anyway, I just get by, by living each day as it comes. I find it is the only way, if I dwell or think too hard/much about what may happen, what may be around the corner then I cannot function at all, and there are certain things that have to be done, dealt with, stressed about in general life!
Hello Stoney: Thank you for the encouragement....I have an appointment with my pulmonologist in 2 weeks...so I am hoping that I can get some better answers and maybe some treatment plans...I am on an inhaler for the shortness of breath, but not sure if this is helping enough or not. or maybe like you said "give time for the medications to work". Thanks again...take care and Hugs to you.
Stoney said:
When I was first diagnosed I was very scared about what my future would hold. Sjogren's is still fairly new to me. . . I was just diagnosed with that a year plus ago, although that is just when things got bad enough to be diagnosed.
As you start medication, things should start to come under some control. The damage that's done is done, but you can stop things from progressing further. Allow time for medications to work, and also for you to adjust to these diagnoses. It's a really big deal.
Hello USAgurl.... Thank you for your encouraging words...I will get to reading and educating myself more on what kinds of things I can expect or not expect (unpredictable). :) I think having you and others on this site to talk to will be most helpful in dealing and coping with Sjogren's + all of the other issues that we are faced with! Thank you and hugs!
USAgurl said:
I can empathize. I have all that you mentioned and 3 more (too many to mention here). At the moment I'm pretty well regulated, but still experience the fatigue, aches, mouth sores, no saliva and the like. Actually of all that I have the Sjogrin's plagues me the most. Sometimes I'm scared and sometimes I'm not. You have tons of reading to do in order to educate your self about these mean diseases. There is no quick easy way to handle all of this. The reading has helped me manage and this website with some dead on information. The web is a good place to start.
You got to hold on.
Felter....hello Thank you for your information about diet! I will definitely work to improve my eating habits....and continue to eat more vegetables! thanks hugs
Felter said:
Have you tried changing your diet? It may help to eliminate gluten, dairy and processed foods and eat lots more vegetables.
Wow, we could be almost be the same person. Former teacher, mother (still, but grown :)) It is incredibly difficult to go from feeling as if you are making a difference in someone's life, to feeling as if you have nothing to offer. These feelings are absolutely normal and expected. You are mourning the person you were, but if possible celebrate the person you can be.
I have gone back to art, act as a moderator on this site, read for pleasure more, attempting to write and try to be the best I can be. I have bad days like everyone else. I feel as if I have cheated my family in some way, but knowing that my disease was very advanced when diagnosed, I am savoring the time I have with my extended family that I let slip by while "living" my life. I did not realize how much I had missed and although some of my family have drifted away, I am closer now to the ones that matter than ever.
You are certainly not the only one who is scared and unsure. I was only diagnosed a bit over a year ago. I went through all stages of grief. And, effectively we all do to a certain extent and should. If you feel overwhelmed by all means speak with someone. There are usually groups if you live in a populated area that are specifically for people with chronic disease.
Biggest hugs,
DeAnne