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Sjögren's Syndrome Message Board
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Old 10-06-2011, 02:19 PM   #1
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Unhappy starting a new journey

Hi I do not know who will be reading this, if anyone at all, and I am not sure where to start really. I was diagnosed with Sjogrens in March this year and it was after I had given birth to my son, had a catalogue of medical disasters and ended up with a Hysterectemy. I then found out about this, I too stubborn to believe it have spent the last 6 months fighting all the facts and denying the fact that it's ME it is happening to. I endured 8 months of hell after an emergency c-section, 6 operations and if that wasn't enough MRSA. Now this!!!! It is fair to say I do not make a good patient and being in the Police Service have a will to battle anything but this is something out of my control. I am ONLY 38. I have two beautiful children and a solid loving husband, we suffered for 13 months after our son was born, now were facing this, only I am treating it like a collision course. Medication for this that and the other and a will to keep this all secret from friends and family. I have told my parents sketchy detail but do not want them to worry and the bits I did divulge have left them devastated. I after all am their baby!!! I do not want to come across as feeling sorry for myself but I truly am devastated. Suffering with all sorts of symptoms and pains but the emotional effect it is having on me now has put me in a bubble. I can't get out and I feel chlostraphobic..I do not want to inflict this on people my husband Rich especially, I genuinely do not know what to do. Its been 6 months since I was diagnosed and I still have no understanding of why?!! I am convinced 100% this is a result of negligence I suffered in hospital, the hysterectemy being the main contributory factor!! Does anyone have an opinion on this?? If you do read this Thank you a million and if not it was my first little step towards realising this is about me!!!

 
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Old 10-10-2011, 12:02 PM   #2
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Re: starting a new journey

I can empathize with you, but autoimmune diseases such as Sjogren's are not caused by hysterectomies although they certainly can cause problems in pregnancies, such as eclampsia and spontaneous miscarriage. Currently, scientists believe that there is both a genetic and environmental component such as virus exposure to autoimmune diseases, but the mechanism remains unknown as to what exactly causes the immune system to kick into hyperdrive. I have secondary Sjogren's caused by my CREST (an old term for a type of systemic scleroderma) and know something of your feelings. I had an emergency C-Section too, by the way. Learn as much as you can about Sjogren's from your Dr and reliable Internet sources. There are a lot of sites that will prey on you, and your worries with worst possible outcomes, if not out and out misinformation. so check your sources. As far as letting your family know, that is up to you, how much you care to share, but you are not alone at least, and as you go along, I think the medicines will start working - many of them do take time - and that will certainly help. I think too, that as you learn to manage your symptoms, you WILL feel more in control. As to the pills, and eyedrops, and such, at least in my case, I have learned to appreciate them as I have benefitted from them. as my family says, Mom can't do without her "spit pills". There are plenty of support groups for sjogren's available, both in person and through the internet. Remember that you are not "inflicting" this on anyone. It is a disease to be managed like any other, and medicine, like life, sometimes doesn't have an answer, whether we like it or not. I hope this helps a little to let you know that what you are feeling right now is something that most, if not all, patients with autoimmune diseases, have felt at one time or another. I have been diagnosed for 10 plus years, and had symptoms long before then when my children were little and am now 51 so I have had a little more time to get adjusted . Take care and let us know how you're doing.

 
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Old 10-10-2011, 03:47 PM   #3
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Re: starting a new journey

Thank you very much for replying. I appreciate you taking the time out to write and it is nice to know that people like yourself understand some of what I am learning and trying to comprehend. I was fine before I had my son who is now 3, and only tested positive for Sjogrens in March this year. I was tested in November last year and it was negative so you can imagine why we would think the hysterectemy has caused all this as prior to all the surgical errors I endured I had a clean bill of health. With it being a very understated syndrome or disease and so little is known in terms of the why's and causes it makes it difficult for me to understand it. All I know is I have it and need to adjust and make the necessary changes. I am trying all the meds some good some not so good but at this stage patience is the virtue. I feel very sad I guess as I have been on an emotional rollercoaster since the birth of my boy Joe and I suppose this is the icing on my cake. Had I not suffered a botched c-section and 7 further ops and lived through hell, and was diagnosed with Sjogrens with out all that, I honestly believe my mindset and acceptance of it would be easier. I do think it was just like the final kick when I was already pretty low. I am a tough cookie and I will battle on, I thought this may be a good way to make me face up to the fact it is happening by speaking to others who understand, and to learn through your and their experiences. I know life is not as bad as for a lot of people, and I feel guilty when I feel blue about it, but it just seems a cruel disease with little supporting knowledge except the worst case scenario facts which I and others can surely do without!!! Bless you for understanding and I hope I too become strong enough to focus on guiding others through the beginning of their journeys. Keep in touch and thank you again. Rachel

 
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