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Jul 13, 2012 · Would like to hear from people with Sjogrens in Autoimmune Diseases

Hi Marion:
Some positive news here is good. You have a great attitude, with a lot of positive thinking. I need a good dose of positive thinking. I would like to think myself healthy again. This just becomes so old so quickly. I find I am in a rut of, “now what is going to happen?” I used to be a positive, bubbly person. Laughter truly is the best medicine. Live, love, laugh. Take care and stay positive.

Jul 13, 2012 · Would like to hear from people with Sjogrens in Autoimmune Diseases

This is part 2; I got knocked off for being long winded. That is what happens when you move from a big city with throngs of people to the mountains where when you finally see somebody you want to run up and hug them! Lonely up here.
I keep getting knocked off. I write too much. Robin you are absolutely correct in the use of statin drugs. I can’t take those drugs. I turn yellow and my liver enzymes become high. They are awful. Yes, anyone truly can do this naturally. I used to laugh when a commercial would come on the television that statins are for those who can’t control it with diet and exercise alone. They just did not do the right things, the right way to get their cholesterol and triglycerides under control. I can picture a guy, smoking, eating pizza, drinking and sitting on the sofa saying to his doctor, “But I tried everything you told me to do.” Wrong. My cholesterol was through the roof all my life due to the hypothryroidism, and my eating, my lack of exercise, my smoking, my stress level until I made a complete change. It works and I would have thought no, my mom had this, my dad had this. It is just in my genes to have this. Wrong. I was not doing the right things. My cholesterol is through the roof again but I barely eat. But, I don’t exercise due to pain, wrong, I eat quick easy to make foods because I feel awful, wrong. So, again, I am back where I started from. I wholeheartedly agree with you. I let myself go and I used to be so physically fit. I did not know that about the melatonin. Very informative. Yes, I think the developed world has become more or less lazy and we think if there is something wrong just pop a pill the doctors will fix it. No wonder they are so nasty. The probably look at us as though we are unwilling to do anything to improve our lifestyle and in most cases they are probably right. I need a health food guru and someone to push me my brother in law has tried since I moved up to the mountains – he lives across the road from me. But since I moved up here the flares have gotten worse and it always seems to be something going on, my daughter, the dogs, the house, my whining, the neighbors, whatever it is can throw me into a tailspin now. I used to be able to handle anything, now if something happens I just fold. I am just not who I used to be. But if I don’t make changes it might just end up being who I was. It’s good advice and I am doing a little each day to make things better. I hope your daughter can find a resolution to her health problems as it is a terrible way for a young woman to have to live. I know, I lived it since I was 30. A struggle to keep my head above water everyday. Thank you for the advice and tips they are all great. I have to remember these words and live by them. It is time to be proactive and not reactive for a change. Take care of yourself and your daughter,

Jul 13, 2012 · Would like to hear from people with Sjogrens in Autoimmune Diseases

Hi Robin,
To answer the question regarding the titanium fusion. Yes, it really worked. I had crepitus and pain. My neck was actually making a crunching noise when I would turn it. I never really thought much about it I just lived with the pain. I found out this is not a good idea to ignore any bone spurs or spinal cord compression. I did not really want the surgery and put it off and the neurosurgeon found out and called me on the phone. I was told quite directly that is not what I should be doing and don’t ever postpone this operation again. This time, I thought it was a mild issue and got yelled at. So, Robin if Kate is having spinal issues they need to be closely watched. I ended up having two surgeries within 3 years. The first surgery was directly performed on the front of my neck. Not so bad except you can have a tendency to choke a lot until you finally heal. The second was for C-4, C-5 compression. This time they went in from the spine. Not so easy as the Sjogrens was rapidly progressing at this point and still no diagnosis. I dried out like a prune after the operation. I understand your concern regarding your daughter’s irritability. Yes, dealing with this day in and day out, and if it is not one thing it’s another can pretty much put a person in a foul mood. It is a relentless slowly progressive, strange disease. Has she been checked for Sjogrens antibodies yet. The tests are not always positive. I went for years with symptoms and nothing to back up my claims. The responses from my docs were not pretty. It was you are stressed out, you need a vacation. In other words, all in my head. Actually it was all in my joints and bones. But I had a bone scan and the doctor kind of giggled and said, “You have arthritis all over, even in your feet!” When are you going back to your Rheumatologist. Still, no positive results and still strange looks. You can have proof and they still question your motives. I don’t know what motives I could have had other than I was eating Advil, Motrin like candy. Yes, the backpacks are killers on our children. They have done many studies on the effects. Please keep in mind that Sjogrens is not always a stand alone disease. It can be primary which means comes with no other autoimmune diseases. Or secondary to lupus, R/A, Hashimoto’s Thyroiditis (Hypothyroidism) I have that one too. She should have the Lupus A and B profile done and that also encompasses Sjogrens. The Schirmer’s test and lip Biopsy is usually the first place to start. My doctors never started there. Just the same old blood work, with the same results. Your daughter needs to have a full workup done. The earlier they know the less damage is done. Also, some labs are just better than others in detecting certain diseases. I am not sure how it works in Canada but we have all different labs that are available. Possibly you do too. I myself am a skinny wreck. Can barely eat and no my diet is horrible. No appetite and that causes me to not want to cook. I have been cooking lately though and trying organic foods. Will continue……..

Jul 12, 2012 · Would like to hear from people with Sjogrens in Autoimmune Diseases

Yes, I have been shuddering for years,regarding your statement regarding errors. In my opinion, this is utterly a disgrace. I have watched this for decades. I handled the care of my ailing mother for years. I had more screaming matches with Doc’s than I would like to admit. Sometimes the words that spilled out of their mouth’s or their nurses were complete lack of regard for their profession. For those of us who are perfectionists and on this site, and I don’t know why there appears to be a common thread of perfectionism. Can this possibly be a personality trait of this disorder. I do know that certain traits go hand in hand with some illnesses. Need more research on that one! I am not an belligerent personality but I am intolerant with a profession that demands respect but does not give any in return. Where is the fairness here? We deserve so much better. We are supposed to be dedicated to what we do for a living. Have we lost the intelligence that once graced this planet. Or have we just become complacent? Sorry, I am venting again. However, do we deserve this type care and disinterest from professionals. I definitely think not. I do not want to leave this earth as my mother did. Neglected in a nursing home. whenever I had to attend to my career and family. I felt like a prison warden overseeing staff at a nursing home that cared only about how much overtime they could collect. What is wrong with this picture? I can’t be a doctor, lawyer, chief, cook, and bottle washer for the rest of my life. I now have to take care of me and have compassion for mankind. Alright, I am off my soap box. Thanks for listening but what I read here makes me see a commonality that is not what we deserve. I do know now, that I was not alone in this very difficult plight of ours. Take care all. Keep the faith and believe in yourselves. You really are not alone. Hugs to All, Dee

Jul 12, 2012 · Would like to hear from people with Sjogrens in Autoimmune Diseases

Hi PowerofPositive:
Just checking in to see how you are? I am pretty much the same. You know, everyday can be a struggle. So much garbage. We tried so hard to be perfectionists trying to accomplish and end goal and always there is an incompetent or road block in our way. What has happened to the integrity of our society. Do you remember when people cared and listened to you and they actually relayed accurate information? Oh, the good old days and how we long for them. I read these posts and from the nuances I am picking up we are a group of intelligent people here. No baloney, just women possibly some men, looking for help that does n’t seem to come. Yes, with a lot of autoimmune diseases comes depression, why I don’t know. I have read and I wish I could quote from it but the brain fog takes over —– a lot— that the brain actually suffers from inflammation as well. They did a study and they used fairly high doses of steroids that appeared to relieve the symptoms of cognitive impairment. In my humble, non medical opinion, even though I read so much I think I could have taught these doctors a thing or two. I believe, there would have to be a depression in the mix. Any disorder that can potentially hit the brain and cause cognitive difficulties which slows our thinking would have to bring on episodes of depression. Take a look at Alzheimers patients. Another lovely disease process. This is known to cause depression. I have watched enough family members with that. Forgive me if I sound bold, this has always been my personality. There were times which I could not believe, I actually stated, to one doctor, that he was lacking in education as I was walking out his door and I watched his mouth drop. I was not always a bold personality until I realized if I did not speak my mind nothing would change for me or anyone else seeking the truth. I believe docs have a speech that they use on the patients that they find trying so they can go on to something that is easier and less taxing for them to accomplish. It is though they look for instant gratification in their practice. Pick the easy stuff as it is quick and easy. Just dump the difficult and hopefully they won’t come back. You know, almost like a sales pitch. I know for a fact not all doctors are like that however there is a large percentage. This disease and others are starting to receive respect. A very large Metropolitan Hospital has a building specifically for Sjogrens patients staffed with Rheumatologists. Opthamologists. Neurologists,Oncologists and many other specialists to treat and cornfirm this diagnosis. I know this as I called them. I can’t state who they are as this I am sure would be a conflict of interest on this site. America is finally picking up where the Asian Countries have been studying and developing new drugs for this disorder as well as Lupus, R/A. America is not the trail blazer of this disease. Two Asian doctors diagnosed me. One doc of Indian descent and one from China and they knew all about it. Hugs to you. Dee

Jul 12, 2012 · Would like to hear from people with Sjogrens in Autoimmune Diseases

Hi Marilly,
It’s Dee again. I am like a kid in a candy store since I found this site. I felt like an alien with this disease. My heart goes out to you and everyone here. Oh, you are not sick enough let’s throw Crohn’s into the mix too. My brother in law had this in the 70’s and nearly died because they thought he was faking. Faking, really? He was 6’2, weighed 220. Became so weak he could not brush his teeth. All he could do was lay. My sister has this disease too. Just having Crohns can put you over the edge. My brother in law was saved by high dose steroids at the time. And now he is having his 60th birthday in a few days. He is taking the drug called 6MP; also known as Mercaptopurine. It was tough for him to take it but he hung in there and finally after all the operations and only a couple inches of intestine left he is stable. He was not supposed to live this long. He ran a Crohn’s support group. At his worst he was 105 pounds. I was watching him die as a teenager. I know the old “Oh, you look fine routine.” My brother-in-law looks better than ever now. At 60, he looks about 40. He can exercise now and follows a strict routine of rest, exercise and limits his activities every single day. I give him credit. I am tired of people saying I look great. I am going to start carrying a picture of myself around before I got sick and ask them if I still look the same. What a contrast. I look old and haggard at 54. I should not look this way. But they still say, “You look great”. No, I don’t. I look horrible. We always say to ourselves, if they can fix this I know I will feel so much better. I am tired of waiting to feel better and I am coming to terms that this may be as good as it gets. Ugh! Don’t worry about the doctors and what they think. I know we need them for our health care which of course is very important. But these folks are not living what we live and they really cannot relate at all. It must be nice to be healthy with a great career. I know I miss my career. You have so many autoimmune diseases you have to be struggling. This is very common to have Sjogrens with these autoimmune diseases. I don’t know how to put on a link but go to Sjogrenssyndrome.org they have a great video and a wealth of information. Some authorities call this an orphan disease. It really is nt it is just not diagnosed and women primarily get this. So, there are 2 strikes against us. I wish you well, stay strong, take care and be kind to yourself. Everyone with ill health needs support. People need to understand that too often we are pushed aside because we have a chronic illness/illneses. I believe doctors get annoyed if it is nt something they can fix with an operation like appendicitis. Is there really people out there that think we would want to live like this? I want my darn life back. I had a great life. I loved life. I was blessed. Now, this is my cross to bear. So, we need to make the best of it and enjoy every moment of relief we get. Write soon. I now feel connected to the rest of the world again. Hugs to you, Dee

Jul 12, 2012 · Would like to hear from people with Sjogrens in Autoimmune Diseases

Hi Mima, I am finally starting to realize that I am not the only person in the whole wide world with this weird disease and even stranger symptoms. I am so tired of feeling like an outcast regarding my health issues. Renal Tubular acidosis. I tried to tell one of my doctors that I thought that was what I had and she freaked out. When I was urinating, and even defecating,( I don’t like being graphic but if we don’t come out of hiding we will never be heard.) I had burning urine all the time and even when I would defecate. My blood work was showing odd signs of dehydration yet I was drinking all the time. My urine now has no color which is abnormal and another abnormality of which I forget. I have to pull my electronic records off my computer. But if I do that I may lose this post too. I just replied to someone, very lengthy and hit a wrong key and poof it is somewhere in cyberspace. My hands don’t work too great anymore or my mind. Wow, I cannot believe that we all have a form of the identical symptoms and yet so many of us were ignored. I hated going to these doctors, I searched and searched until I found, well I can’t say I found him a phlebotomist told me about him. She said to me, listen, if this guy can’t figure it out, no one can. She was right. We even have to network our health. Mima, I can give you words of advice when you feel down, think about us on this site, chances are we are feeling down too. We are all struggling with this bizarre disease everyday and boy, is it a struggle. People can support each other from a distance. Believe me, I am not one to post or blog however, this is our plight. Our right to be heard and believed. Question, were you taking the brand name Plaquenil or the lovely generic. I ended up calling Sanofi the drug maker which I would never do to thank them for the quality of their product. I hope I can post that. It seems to cause very few side effects and I get side effects from everything. The Plaquenil was a miracle for about 6 or 8 weeks and symptoms starting popping through again. I was to take the cocktail of Metho, Plaquenil and Prednison (steroids). Forget the Metho, at least for me. Started itching, swelling in strange places and feeling just awful. This was my second try at the Metho. Mima, you need to vent. Stop trying to suck it up. Women are always told to suck it up. We need to be heard and understood. We have to talk about this and the medical profession needs to listen. I write too much. They are probably cutting me off. We all have a lot say and we are here to listen. Write often, this is therapy for all. Hugs, Dee

Jul 12, 2012 · Would like to hear from people with Sjogrens in Autoimmune Diseases

Hi Robin, I wrote an incredibly lengthy reply and I think it did not post to your response. I hit an incorrect key. Poof, I can’t retrieve it back. I will check to see if it shows on the blog tomorrow if not I will re post. If it does post it will have an incomplete ending.. Sorry about this. Just give me a day to see and I will let you know the details as this is important for you and your daughter. I appreciate your information and insight. It all comes down to knowledge is power. Will write tomorrow. Thank you sharing your info with me. Dee