Yea, that inflammatory marker comment really got under my skin and made me angry. I have been to a Pulmonologist because I was wondering if I had interstitial lung disease, and I didn’t. They believe the pain I have in my rib area is the cartilage has separated from my rib all the way over to my spine. An X-Ray showed no fractures. Just has to heal with time.
Thank you for your kind words, and I appreciate the support that is provided from this group! It truly feels like the only true supporters I have. I hope you continue to hang in there!
USAgurl said:
See if you can see a pulmonologist. I had a cough for "9 months" and it turned out to be an "brochiectasis" (interstitial lung disease caused by the Sjogren's that's similar to juvinile cystic fibrosis). Not that that's what you have. But SICCA can cause chronic lung diseases.
When the brochiectasis started, I had osteoporosis. All my ribs have been fractured 1-3 times. Was treated with Reclast for the Osteo which has allowed me to cough and clear my chest without hurting the ribs. I take nebulizer treatments as well.
Don't like this sentence: "if your inflammatory markers are normal then you should not be experiencing any symptoms." NOT! That's the kind of baditude that keeps us from being diagnosed earlier.
Turn over every stone in your care. We are here for the support that we all need. You got to hold on!
I looked for the recipe you spoke of, and I could not find it. Would you mind sending it to me? Is it easy? See, I’m one of these horrible, impatient types that unless it is quick and easy I tend to get burnt out and not do it anymore. If you know of where I can get any quick and easy supplements or meal replacement ideas could you point me in the right direction? I have no appetite, and I’m losing weight. And no one seems concerned but me.
SGoddess said:
Dear Kayrn,
You are in good company here! I believe we have all had most, if not all, of the scary symtoms you've shared with us; I have had the same experiences.
The cough is a constant with me, especially if it is windy and dry out and at night even worse; what is probably worse than the disease is the "you look fine" or "you look great" along with the skeptical look on the faces of even your loved ones. I was diagnosed almost 3 and half years ago and my husband still "doesn't get it", I have heard couples getting divorced over this!? Anyway, I have to take a little something at night for the anxiety (that turns to depression if I don't) of having Sjogren's, if I think, even for a minute, about how it has changed how I see myself I break down and cry and I wonder how many more "flare-ups" I can handle and how many more will come!?! So I don't think, I just "do" anything and everything I need to fight this disease!! I will not "just learn to live with it", like both your Rheumie and mine suggested! As I am writing this to you I am drinking my Mean Green Drink, which I have adjusted even since I posted my receipe a few weeks ago; it gives me energy, helps with aches and pain, both in joints and muscles and I have added Alive!, which is Calcium with Vitamin D3, all veggie based and also a sublingual B12. I know, and have had those mornings when I feel that my legs will not hold me, but I get up put on my walking shoes (weakness, pain, and all) and take the dogs for a 30 minute walk, when I get back I have my Mean Green Drink and I reassess how I feel and by then I am feeling much better, then I have a gluten free breakfast and the world is fine again and move on. I am on the trail of getting us more information on Gene Therapy, which is a game changer!! Hang in girlfriend!
http://m.youtube.com/watch?v=Xn676-fLq7I&feature=kp
Ok. I’m being a little silly and this is a sensitive topic. I use to say “what doesn’t kill me ticks me off.”. But, I survived Lupus, ITP (low platelets), IC, TN, crazy personal stuff and the SS has upset me deeply. But I have moments, good moments… When I know that I’ll get through this. This group has been a big help. We will be stronger and stand taller !
Nicely said!Do your best, let God do the rest…so simple and necessary but easy to forget when we’re tired & grouchy. Lol
confused said:
Been there too. It's so horrible. But remember this too shall pass. I think that it's so sad that we have to go around trying to prove to this one and that one that we aren't faking. I dealt with that w/ my fibro. I stopped trying to convince people. Once I did this AND learned to mourn the "old me" I really started getting better. The only one that needs to know the truth are you and God. Just do your best and let God do the rest. I've had many melt-downs. That's only b/c I was keeping everything inside. Trying not to "bother" others and do everything for and by myself. even though I was making myself sicker. Life is poetry in motion. People that judge should be careful b/c it'll come back on them or someone that they really love. My SW used to always laugh b/c I would always say..." All I'm asking for is to be very sick in peace." LOL
I said a prayer for you already. God Bless you Karyn. This too shall pass. Learn to treat yourself the way that you're always treating others...even when you're not feeling well.<3
USAgurl, lol at my new favorite word "baditude"! Good one.
Karyn, you came to the right place to vent. I think I've lost track of my many meltdowns. Sometimes I fight them and fight them and fight them and when I just finally give in and allow myself a meltdown, I feel so much better. And like others say you get 15 good minutes to do something productive and then you're done for the day. I get so overwhelmed sometimes by the things I feel I should be doing, and consequently I end up doing nothing because I dont know where to start. Or I don't want to start things I know I cant finish. And the merry-go-round of this doctor and that doctor, oh Lordy. I think that's where the dizzy symptoms come from LOL!
Bottom line Karyn, it helps more than you can imagine to just let it out to people who REALLY get it. My heart is with you.
Well, Sjogrens can cause some of the same symptoms as MS, so if it can do that, it can do a lot of things. I feel your frustration. When I was diagnosed, everyone was, "Oh, SS, well, it is better than lupus." And, I think for the most part, SS doesn't sucker punch you as often as lupus, but Primary SS causes many more problems than I was let on to believe. I have found, and I don't always do this, that you have to just keep going back. And, unfortunately, some things you DO have to live with, but so much of my disease activity showed up long before my markers showed positive. Autoimmune diseases are like that. The symptoms often march along ahead. I have heard the same thing you have about the markers being normal, so all is well, but I am thinking that that may just not be true. Heaven knows, my body does not seem to have gotten the memo.
Me again…time for another meltdown. I just want to give up! Now I have been diagnosed with Gastrparesis which means I need to make all these smoothies, and like I have time to do that with working full time and all that extra energy I have. I’m still waiting for all that extra energy to get me back to my walking or back to the gym. As I sit here typing through the tears, I realize my life consists of attempting to hold down a full time job (which gets harder by the day), sleeping, trying to get food down, and taking pill after pill. I fucking hate it! (So sorry for the expletive)! There are days I wish I would just go to sleep and stay there. I have even been screaming at my dogs when I am frustrated from my pain. I live alone! So I have no support. If the house is dirty, it just stays dirty until that moment of time when I feel decent enough to do something. I don’t dare have friends over because I don’t want them to see how filthy my house is. I just hate what my life has become. I used to be this bubbly outgoing person who was on top of everything. I did good at my job, and I had tons of friends…now I am just the opposite! Sjogrens, Fibro, and Hashimoto’s can go straight to hell!
I'm sorry, Kayrn, sometimes it can be pretty overwhelming. I have gastropareisis, as well. I don't do smoothies, though, unless I want to. Did your doctor say it has to be smoothies? Can eating smaller meals, several times a day (think snacks) and staying away from hard to digest foods be enough? Only you know. I understand what you mean about leaving the house dirty. I do. You are more important than the house. Much more. So am I. This may not be your forever. These illnesses are so...fickle. For now, though, it sounds like it is just all too much, and I am so, so sorry. Hugs.
Hey Bookgeek, the doctor didn’t specify smoothies, but I’ve been having trouble lately with solid foods. I do try to snack through out the day. Any suggestions on what kinds of things you are eating?
I'm so sorry to hear you have one more cross to bear; stay strong but when all else fails, a good cry is in order. Had one this morning and felt better! Maybe it was all the "moisture"?! ;)
Anywho I gathered the following info and would definitely check out what Bookgeek said, because most doctors seem to concur that eating and Sjogren's is a good thing because it causes necessary "juices" to flow and turn into acid to break down anything we eat. I do both veggie and fruit blasts plus food, but there are a lot of things I can't "stomach" anymore due to the SS, but I do eat simple small meals. What helped me was keeping a log at the beginning and now I just know what will hurt and what won't. Good luck!
"Gastroparesis sufferers are disproportionately female. One possible explanation for this finding is that women have an inherently slower stomach emptying time than men.[5]A hormonal link has been suggested, as gastroparesis symptoms tend to worsen the week before menstruation when progesterone levels are highest.[6]Neither theory has been proven definitively.
Gastroparesis can also be connected tohypochlorhydriaand be caused by chloride, sodium and/or zinc deficiency, as these minerals are needed for the stomach to produce adequate levels ofgastric acid(HCL) in order to properly empty itself of a meal."
Well, we both know it is different for each of us...and, it changes with flares. It can also, I have been told by others and feel myself, be affected by hormones, an illness, fatigue, etc... As we age, we naturally develop gastropareisis to some degree. Raw veggies are harder to digest than cooked, popcorn just moves around in your stomach without benefit of digestive juices, and for me it is like schrapnel. Too much meat, especially red, is tough to digest. Fish and chicken are better. I don't have the old handout I used to have, but this one is very similar...maybe even better. http://www.motilitysociety.org/patient/pdf/Gastroparesis%20AMS%20Dietary%20Recommendations%201%209%202006.pdf If you are in a particularly bad spot, doing smoothies for a day or two can be a nice rest for your tummy, but I don't have to eat as strict a diet ALL the time, so I hope that that may encourage you a little that this may not be the way it will be all the time for you. I was born with gastropareisis. It waxes and wanes. Exercise increases digestion, but it doesn't have to be the gym. It can just be a simple l walking around your living room. And, if you don't feel like that, just don't. Don't dump any more guilt or awfulness onto the situation, it will only make things worse. If you are not kind to yourself, you will yell at the pups (I have dogs, cats, too), and be more upset with yourself. It's not your fault you don't feel well, and you don't need to apologize to anyone...not even yourself. My house is trashed right now, as I am in a new job and grad school. Like you, it is easy to feel like things are getting out of control. Not as much, though, as I used to a decade or two ago, though. We will do better if we provide first aid for ourselves, first.
Kayrn said:
Hey Bookgeek, the doctor didn't specify smoothies, but I've been having trouble lately with solid foods. I do try to snack through out the day. Any suggestions on what kinds of things you are eating?