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Wednesday, April 26, 2017

My Typical Lunch for Sjogren's Disorder and CKD

I will be doing a final Sjogren's Awareness post, a kind of putting it all together, and my thoughts on it all, in a few days.  But, for today, I want to share a typical lunch that I have chosen to eat almost daily.  I do once in a while eat something else, but for most days this is it, with variations.  I drink one Sprite a day, no dark colas, and I am trying to be soda free altogether, but you know it is hard to give up everything.  Sprite is low in sodium, and has no phosphorous.  If you are diabetic, I am not, any soda is a not so good choice.  I alternate any of the items listed below, depending on what I have in the  house.

Lunch for anti-inflammation caused by Sjogren's and health for CKD.

Since bread causes inflammation in the body, and is high in sodium, I avoid bread at all cost.  I do eat pizza here and there, but I use no sauce, and thin crust.  So instead of sandwiches, I eat a salad with any, or all of the following depending on my supplies.

Baby spinach, instead of lettuce.  Why?  Lettuce has phosphorous in it, and while spinach does have potassium in it, it is a wonderful source of iron.  I try to eat small amounts of meat only, so I need to get my iron from somewhere besides a supplement which is horrible on the bowels.

For other veggies, cucumbers, celery, bell peppers, no carrots, tomatoes, croutons, bacon bits etc.

I put loads of fruit in my salad like strawberries, blueberries, pineapple, apples, and sometimes grapes.  CKD patients can eat lots of berries, and grapes.   However, citrus fruits, except lemons,and melons except watermelon should be eaten in limited amounts only, or avoided altogether.

For cheese, I use Sargento Baby Swiss only.  It is very low in sodium, and I use only small amounts since dairy increases inflammation, and has phosphorous.  Not all Swiss has low sodium like Sargento, though it is still lower than other cheeses.  Read the label, to be sure.

I always like to add a meat to my salad.  Since lunch meat is really high in sodium, I try to use lower sodium options, and still only a couple of pieces chopped up.  One egg can substitute as a meat source.  Eggs are high in phosphorous but are also a great source of Vitamin D, which is extremely important for kidney health.  Always use caution when eating too many eggs.

For the dressing I use Raspberry Vinaigrette, or Strawberry Vinaigrette with one teaspoon of regular Italian dressing.  The vinaigrettes are low in sodium in comparison to other dressings.  I was making my own Raspberry Vinaigrette, but it isn't exactly cheap, and only makes a very small amount, so I gave it up.

For a beverage, I drink only one cup of coffee a day, with either no sugar or honey in it, and small amount of french vanilla creamer.  I am going to get decaff so I can make my iced coffees, but I will have to limit the creamer. Like I said one Sprite, and I add two lemon slices to it.  I reuse the lemon slices in my water, to which I add a small amount of any Ocean Spray juice.  I use pretty much only Ocean Spray because it is low in sodium, and it uses no preservatives, high fructose corn syrup, and is all natural.  It is worth the extra 50 cents or so to buy it.  I use it to make my own flavored water.  A note about water, CKD patients should not drink tap water, apparently, but filtered water only.  We have a filter on our fridge, so that works, but just take note that not all bottled water is filtered, so bring your own, or read the label to find out.

I will discuss dinner later, a much trickier meal for anti inflammation and CKD.  Always remember, this is informational only, and not intended to be medical advice.  Always research options, and talk to your doctor before you make drastic changes to your diet, especially if  you already have other illnesses.  Again, I do not have high blood pressure, or diabetes, but many people with CKD, do so my choices might not fit your needs.

Friday, April 21, 2017

Caitlin's First Puppy and Dog Youtube Video

As we come up on our fourth quarter, I start to think about the next school year.  DJ will be a senior next year, and he will be doing most of his classes on FLVS.  Easy for him next year.  He probably will do Japanese on Time4Learning, and History with me.  He wants to do Greek Mythology, and FLVS doesn't offer that.

Caitlin will be doing a whole year of Weather, for her Science.  For technology, and whatever else I can relate to it she will be making videos.  She will start with educational videos on how to properly care for a rabbit.  We will move on from there.  Her first video is below, of our new puppy and other two dogs.  As part of her Math class, and learning a skill, marketing etc she has joined in my Etsy shop and will be creating loom rubber band ankle bracelets, and bracelets.  You can see her first item, here.

Tuesday, April 18, 2017

Dealing With Stress and Sjogren's Disorder

One of the things that can make Sjogren's, or any of the many Autoimmune disorders worse, is stress. Stress has recently been labeled the silent killer, and for good reason. Stress causes inflammation in the body, and inflammation causes illness, especially, but not just for Autoimmune disorders. These are the things I have done for many years, not just since being diagnosed, to help alleviate stress.

1. We all need to work, but we don't need to kill ourselves doing it. Don't be a slave to a paycheck, or debt, just to buy more stuff, or gain status. These things are useless in the end, and you can't take them with you. Living within your means, and living a simple life, may not be exotic or fun, but it truly is a lot healthier for you, especially if you suffer from disorders like Sjogren's.

2. Learn to say no, and then do it. Don't take on 100 different things that you know you do not have time for, or the energy to do. Women have a tendency to take on everything like they are Superwoman, and for a while you will be. But, it will catch up with you, and not in a nice way. People in your life will just have to get over it, period.

3. Change your diet. I know everyone says this, plus lose weight, blah blah blah. But, if you are eating tons of dairy, meat, and preservative filled foods you are only causing yourself to have more inflammation, and when the body is inflamed it is stressed, and when it is stressed your Sjogren's symptoms are going to be worse. Well over a year ago, I gave up dairy, almost completely. I was tired of having acne, and I had read it might have been caused by dairy. So, I quit it, and I loved milk and ice cream. I have no more acne. at all since then, and with only one good kidney all the protein in milk would be a killer. With CKD, I have had to give up tomatoes, and bananas, two of my most favorite foods. I also have to limit potatoes a staple in our house. Foods that increase acidity in your body will just make you feel icky, and cause more stress. Start slow if you have to, and work on it each day. Do research, and learn about an anti-inflammatory diet.

4. Exercise some if you can. Most people with Sjogren's, as well as any Autoimmune disorder, suffer from some sort of pain. Pain can make exercise difficult. However, gentle exercise can help your pain. Start with stretching, move up to Yoga or Taichi as you can. I have been on a walking regime for over three years now, so long before I was diagnosed. I try to walk five days a week, as well as some light weight training. I do have a great deal of pain some days, but as I get stronger it gets better. I can not tell you the importance of stretching. If I don't stretch, oh boy I pay for it. Please be easy at first, and discuss exercise with your doctor. I feel better when I exercise, but you might not.

5. Sit out and enjoy nature, enjoy the sunshine on your skin. Obviously be aware of when the bugs are active, and don't be in the sun too long. Nature has been shown to be a natural stress reliever. I love to be outside, and when I lived up North would get the Winter blues. Sunshine is good for me! I love to feed, and watch the birds. I have plants that attract butterflies and hummingbirds, they are so much fun to watch. Planting a small garden is another great way to get some gentle exercise.

6. Learn a craft, or hobby. I have been crafting since I was a young girl. My mother has always been creative, and can do just about anything. She taught me to crochet at a very young age, then I learned counted cross stitch, and threw the years have continued to learn new crafts. I love to make jewelry, paint, wood burn, etch glass, and yes even crochet still some. These are great ways to help alleviate stress, and clear your mind from thinking of things that stress you out.

7. Get plenty of sleep. I think that one is self explanatory. It is when your body revives itself, if you don't get enough, work on it. I used to take Benadryl for sleep, many years actually because it relieved leg cramps too, but I now take Melatonin a completely natural sleep aid. It will not harm my kidneys, and some studies show it actually does some good things for the body. Ask your doctor first to be safe.

Be kind, and love yourself. Embrace your disorder and vow to conquer it. Having an optimistic attitude will work towards relieving stress. Don't let other people steal your joy. If they are not bringing you love, and kindness then re-evaluate if you really need them in your life.

Sunday, April 16, 2017

Counting My Blessings this Easter!

Today, I woke up just like everyone else who woke up this morning.  I drank my coffee, enjoyed a beautiful dawn outside while drinking my coffee.  I got dressed, let my 16 year old drive us to church, and proceeded to line up in our church choir to sing praises to the Lord.  Then it hit me, all at once, like a punch in the chest,  I shouldn't even be here.  I should have died last December.

I most likely had been in acute renal failure, with at least moderate metabolic acidosis.  I thought I was just worn out from Christmas, and was getting the flu.  After a while I thought wow this is some flu, and that is when I sought medical care.  However, at least 3 weeks had passed since the beginning of symptoms, and I was slowly improving every day.  The only treatment I had in that time  was sleep, lots of it, like 18 hours a day, water, just water, no food for at least 2 weeks, and prayer, lots of prayer.

I am not pushing religion, I don't do that, nor am I saying you will heal without medical care, I don't do that either.  What I am saying is I didn't die, and I should have.  Or, at the very least been in the hospital for a very, very long time, with probable emergency dialysis.  For whatever reason, my body, even with an Autoimmune disorder, Sjogren's, my body was able to bring itself back into at least pre illness balance.  I was still in Metabolic Acidosis when I saw the kidney doctor a month ago, but with proper treatment I am hoping I am in almost complete balance.  You can call it a miracle, blessing from God, lucky, whatever you want.  But, I call it a blessing that it was not my time to be called home to the Lord, and I still have a purpose here on this Earth.  I have been saved since I was a teenager, and though my walk with God has been bumpy and curvy, I have the peace of knowing that when I do pass away, I will be in a better place.  I am not ready to die, but I am not afraid to die either.  I didn't expect to get so sick in December.  I did not expect my kidney to fail.  I did not expect to be living with an illness that will most likely continue to eat away at my body.  But, I can be thankful every day for my blessings, and the walk I have been given to continue to walk.  It might be hard, and it might not always be fun, but it is a part of me, and who I am.  Believe me, I have had to make a lot of hard life changes.  One of which is not taking NSAIDS for pain, and yes there are some days I have a great deal of pain.  I have had to modify my diet, and lifestyle to be sure I am doing the best to keep myself in balance.  I could have chose to do none of those things, but then I might not be here to enjoy this beautiful Easter day.  Yesterday, I read something that made me so sad.  It was meant to bring awareness to Sjogren's and other autoimmune disorders, but at least for me it just made me think how horrible.  It said, Sjogren's will attack your body every single day for the rest of your life.  To me this statement seeks pity, and guilt from anyone who might read it.  Not awareness and a positive attitude to get out the word about this disease.  I know for me, I don't want pity, I don't want to be treated differently than anyone else.  I don't want people to point to me and say ha, if you weren't chubby, exercised more, or changed your diet, you wouldn't have this disease.  If only it was that simple.  I want people to realize they need to respect everyone, no matter their situation, and to imagine walking a mile in their shoes.  I want people to reach out with hands of love and kindness, not point the finger of shame and guilt.  Awareness does not have to be humiliating.

I hope you will have the same peace and blessings as I have had.  I will never know when it will be time to leave this earth.  Some pass very young, and unexpected, while others live to a very old age and know it is their time.  Having peace with  my spiritual being, brings me comfort in ways that are unimaginable.

Please, if you need to seek counsel for your spiritual being, reach out to someone to assist you.  But, most important be blessed, and grateful every day to still be able to appreciate the warmth of the sun on your skin, the smell of the wildflowers, the laughter of children, the frolicking of your pets, and all the other beautiful things that make life what it is.

I will discuss coping with stress in my next blog post.  

Friday, April 14, 2017

Hurricane Preparedness for People with CKD Sjogren's Awareness Month

I live in Florida, I have CKD, and I need to put together a hurricane kit, starting in May.  Since I was just diagnosed in March, I thought to myself, how do I make sure I will be safe in a disaster?  So, after some research I found a preparedness list on Davita, that even tells you how to break down your emergency rations into meals for 3 days.  Since, here in FL you can lose power for many more days than 3 days, I probably will double or even triple the items for my CKD, and the others in my family as well.  I would recommend keeping the CKD items in a separate area than the other food, maybe ziploc bags or sealed containers marked as such in your bin, bag, or box.  One other thing I will be looking into, is that I can register with my electric company as someone with a chronic illness, and they try to get them people restored first.  I do not use Dialysis, but if you do, or have O2 or any other item that is life sustaining, make sure you register with your electric company for sure.  I will be summarizing the items for CKD, and then sharing the link to all the info.

So, because people with CKD can really only eat certain items of food, setting up an emergency food kit can be tricky.  Since I eat a lot of fresh fruits, and veggies, I was wondering how exactly I would eat, when a lot of store shelf foods are processed, and high in salt or sugar.  I am not diabetic, but that doesn't mean I should suck down a ton of sugar either.

So this is the items they recommend for a 3 day diet kit for CKD, I will state changes I would make for me due to preferences.

1-  3 packages of dry milk or 4 eight ounce cans of evaporated milk.  Evaporated milk can be high in sodium, calcium and protein, so they do recommend watering it down before using, half and half.  Be sure if you choose evaporated milk that you have a way of opening the can, or it will be useless to you.

2-  1 to 2 gallons of distilled or bottled water.  They noted that if you are on dialysis, and you have no power, you should drink only 2 cups of water per day until dialysis can be restored.  This is a very small amount of water so be prepared for that.

3-  Powdered fruit drink 1 can or single packets.  I personally will not be doing this for me, way too much sugar.  Straight water will work best imo.

4- 1-2 cans of soda, except for dark colas.  Again, I will just add extra water here, or 100% juice, and Ocean Spray is pretty much the only one I use because it has the lowest amounts of sodium, and no preservatives.  Apple and Grape juice are low in potassium so good choices there too.

5-  6 boxes of single servings of cereal.  Don't use Raisin Bran.  Cereal is actually a very good source of iron, since almost all of them are fortified with iron.  They are usually low in sodium, potassium, and protein making them an even better choice.  Always read the labels to be sure, and keep in mind most are very high in sugar.

6.  1 box of sugar, or sugar substitute.  I don't know about this one being in my kit.  I just don't see a use for it.  However, if you are a diabetic, it probably would be a very good idea to have some kind of sugar in your kit, in case your sugar drops.

7.  Cans, or fruit bowls, they suggested 12.  These need to be low in potassium, so no raisins, oranges, or bananas.  I think most other fruits are low in potassium, except maybe kiwis, but be sure and read labels before adding them to your emergency food kit.

8.  8 small cans of unsalted meats.  I have never seen completely unsalted meats, especially in a can.  I have seen low sodium tuna, but the others suggested I have not.  I will be putting peanut butter in my kit, not meats. Peanut Butter is high in protein, however it is also high in iron, and other important nutrients.  I will add low sodium crackers, not bread, to my kit.  If you add the unsalted meats be sure to add mayonnaise, or something to make it with, unless you are going to eat it straight out of the can.

9.  Like I said above, a loaf of bread, small jar of jelly, and small jar of honey.  I will be adding all these to my kit, except the bread.  Will substitute crackers for bread.  Ritz makes a low sodium cracker, and it is the only brand that I have found that does, at least where I live.

10.  A box of Graham Crackers or Vanilla Wafers.  I will add both of these to my kit, as everyone likes these. I have not checked the sodium levels on either yet.  If these are high in sodium, cereal bars will be used.  They have good amounts of iron as well as other nutrients, and everyone at my house likes them.  I think they probably have preservatives, but I guess in an emergency I can't be too worried about that.

11.  4 to 6 bags of hard candy. This one is probably the easiest, lol.  Of course these will be high in sugar, unless you buy sugar free.

12.  1 package of marshmallows.  Nah, no thanks.  I will probably do bags of pretzels or something.  I hate marshmallows.

That is the list.  Of course always remember a can opener, and utensils.  I mean you could eat like a caveman.

I could not find my list for medications that kidney patients should avoid, it was for transplant only.  I might share it anyways, because they are damaging to kidney, why wait until you need a transplant to avoid them if you can.  Remember, the amounts shared are for one person, you, the kidney patient.  If you have more people in your family you will need to double, triple, quadruple, etc depending on how many people are in your home.

Monday, April 10, 2017

How to Watch Your Phosphorous, Potassium, Sodium and Protein Intakes with CKD Related Disease and Sjogren's Syndrome

As I stated previously, I have been diagnosed with Chronic Kidney Disease, stage 3, but it was improved with my last labs. I am praying for it to continue to improve, though I will never have two normal working kidneys ever again. The doctor can not tell me for sure if the Sjogren's caused the kidney issue, or if it was caused by something else. However, there are two major causes of kidney failure, uncontrollable high blood pressure, and Diabetes, neither of which I have. So it is suspected that if it was not congenital, which I do not think it was, it was most likely Sjogren's. Sjogren's does not just attack your lacrimal, salivary and nasal secreting glands. It can also attack other glands in the body as well. Neither of my doctors, to date, have suggested any diet changes, or a Nutrition referral. So, I did my own research, and put myself on a renal diet. I won't give specifics of the amounts I am doing, because if you don't have some medical understanding of conversion rates you could do yourself more harm than good, if you lower your amounts too far. Apparently doctors are not trained in nutrition, so as I said before you need to be an advocate for yourself, or assign one to help you. Ask your doctor about Nutrition and a renal diet, if you have CKD.

The kidneys filter out excess waste that your body does not use. The four main food culprits that can harm the kidney are phosphorous, protein, sodium, and potassium. Reducing some of these foods from your diet, not eliminating without a doctor order, can help the kidneys from getting further damage. Again, I must restate I am not giving advice, seek the advice of your doctor, everyone is different and you may have other illnesses that you have to be even more careful about your diet than I do. Your body needs all of these things, but you might need less, or more, than someone else.

I will start with the easiest one first, Phosphorous. Phosphorous is found in dark colas, and meat, mostly. Those are the two largest sources of Phosphorous. I have already given up Pepsi, and refuse to drink any dark colas, even diet. Meat, my portions are down to one to two servings a day. A serving of meat is a piece that will fit in the palm of your hand. If you are like me, and millions of other Americans, you probably are, or were eating 3-4 times the serving size per meal.  I can't forget dairy.  I quit dairy at least a year ago, maybe more, so I almost forgot to mention that one.

Sodium, imo, is the most difficult to control.  We over eat salt at such an excessive rate in this country, it is no surprise that we have so many chronic illnesses.  Salt is in everything, and I mean everything.  What I do for salt is I read labels, all labels.  Sodium has to be on there, even if it is zero, it is the law.  If a serving size of anything has more than 140mg of Sodium in it, I don't eat it, period.  We do not cook with salt, and if I add it, I add it to my own food in little pinches.  I have learned to enjoy other spices besides salt, and if you have a kidney issue you should not be using Sea Salt.  Also, if you have a kidney issue salt substitutes contain very high levels of potassium, so be very careful. Drinks, also have sodium in them.  Water is best obviously, but since I get very bored of just water, I use Ocean Spray juice blends only.  They are low in sodium, and use no preservatives or added chemicals.

Potassium is next.  I love potassium rich foods, tomatoes, oranges and bananas.  I no longer eat those things, or if I do in very small amounts even less than a portion size would be.  Since having  a low potassium level is just as dangerous as a high potassium, you really have to be careful when messing with this one.  Potatoes too, another favorite, are high in potassium, but you can leach them before using them.  I do this every time I cook them now.  Leaching involves, peeling and soaking them for hours in water, before cooking them.  When you do cook them, you have to drain the water and cook in new water.  Below I will share two websites that I love on nutrition for CKD.

Last but not least is protein.  Your body needs protein, but we Americans eat way too much of it, and some people eat enormous amounts to build muscle mass.  Again, meat, dairy, and legumes are the main sources of high protein foods.  For this one I do similar to Phosphorous, mostly avoiding red meat, and smaller portion sizes.  I do similar to Sodium in that if it is more than 140mg per serving, I try to avoid it, or get the portion size down to the amount I just mentioned.  Sometimes this means I am eating very little meat, but I would rather have a tiny piece of steak, than no steak at all.

You need Iron, Vitamin D, and Calcium all which the foods I mentioned are good sources of.  Your physician may recommend you take a supplement if you have CKD to be sure your levels do not go too low.  Iron is a hard one for me, because I don't want to take oral iron due to risk of constipation. So, since I am not diabetic I eat cereal at least twice a week, since most cereals are fortified with Iron, giving me a good safe source for my needs.

Eating out is very difficult, and I can speak to that first hand.  One of the things my family very much enjoys is eating out. I would say we eat out at least once a week.  I have had to majorly change my eating habits when eating out.  I have informed my family I will no longer eat McDonalds, or any other fast food, and if at a restaurant I always have a salad, and bread, then I pick the best dish to fit all the above and try to eat only a quarter to half of it, and bring the rest home.  I can tell you, if you have CKD, and don't want to be on dialysis, that is my goal to not be on dialysis, then learn to cook,  Pre packaged foods, fast foods, snacks and a lot of breads are all high is sodium and full of preservatives all which are bad for the kidneys.

These are two of my favorite websites for CKD.  I am still newly diagnosed, so I am always looking for good reputable resources for myself.  Davita, offers a great menu and recipe planner for CKD.  I love it.


National Kidney Foundation

Saturday, April 8, 2017

Living with Sjogren's Syndrome

Due to limited time, today I am sharing a video with tons of info on living with Sjogren's Syndrome. The speaker does have a little bit of an accent, but this video is worth watching.

Tuesday, April 4, 2017

Living With Dry Eyes Sjogrens Awareness Month

For day 3 of my Sjogren's Awareness month posts, I will be discussing dry eyes. As I have stated previously I have been living with dry eyes, for many, many years. Over the years I have seen various doctor types, don't want to knock non doctors, but I have never had good luck, and I always ask to see a doctor now for myself, and my children. I have been told it is allergies, see an eye doctor, try this eye drop, try that eye drop, but never getting an answer as to why my eyes were dry and gritty almost every day of my life. I do see an eye doctor, it has been a few years, but my eyes don't really change much. I wear readers bought from the dollar store, and that was all that was prescribed to me basic reading glasses. I was told there was no eye disease, and I believe that. Now that I am finally heading towards answers, I can concentrate on treatment plans.

Dry eyes is not as distracting as dry mouth, in my opinion, but it can be painful, and cause blurred vision. Because I have kidney involvement, with probably Sjogren's my options are not as broad as others may have. Talk to your doctor about prescription eye drops if you think you need them. I use just natural tears, or soothing tears, both bought over the counter, and have no medication in them. I also have light sensitivity, which can be quite awful, especially when fluorescent lights are being used. I worked night shift for years, one reason was to avoid all those fluorescent lights everyone uses. When I did work day shift, I would go home with the worst headache every single day. I wear sunglasses almost always when outside, even when it is cloudy. People used to stare and ask me if I was hiding something. I would just tell them yes, my glowing eyes. We live in Florida, so adding humidity into the house, when you want to remove humidity, is kind of silly. But, if you can use a humidifier by your bedside, or a bigger one for the whole house, it would be a great idea. Wash your eyes with warm water and a clean cloth. Carry clean, sterile cloths with you to dampen your eyes as needed. You can even spritz them with a spritz bottle, but carrying eye drops works too. I haven't discovered too many things that actually help dry eyes, so if you do something awesome let me know in the comments. Don't forget antihistamines, and other drugs may cause dry eyes as a side effect. Don't ever stop taking your meds without discussing with your doctor. There may be another medication you could switch.

Please share this blog post, and the others I am doing as well, to increase awareness to this disease.  Use the hashtag #thisissjogrens.  Visit the Sjogren's Syndrome Foundation website to get all kinds of awesome info.

Remember this is my personal blog, my personal experiences with getting diagnosed with Sjogrens, and kidney disease. I am not giving medical advice, nor should anything I say be taken as medical advice.

Sunday, April 2, 2017

Tips for Living With Dry Mouth Sjogrens Awareness Month

As stated in my previous post, I have been living with dry mouth, for probably five years, or so. It is hard to pinpoint exactly when this began, but I know it was one of the more recent symptoms. At least as far as I noticed. I may have had it more years, and it just didn't bother me. Since I used to take a lot of allergy meds, I figured it was just a side effect from that. I will discuss meds at a later date, but since I mentioned allergies, Claritin is the only one I can take anymore due to kidney involvement. Always discuss meds with your doctor. A dry mouth can be very distracting, and even painful. A cracked tongue, damaged teeth, or swollen salivary glands can all be painful. My tips below are just that, tips, things I have done, and not to be taken as medical advice. Please always consult your physician, do not take my word for it. I research everything first, and then discuss with my doctor.

1. I almost always have a drink with me. I do not guzzle, just sip.

2. I no longer take Benadryl for allergies, unless they are severe, or I am suffering leg cramps at bed time. Benadryl, and other antihistamines have a drying up effect, and can make dry mouth much worse. A lot of people take Benadryl to sleep at night. If you suffer from dry mouth discuss with your doctor other alternatives for sleep. I use Melatonin now.

3. Carry hard candy, or lozenges with you. Because I have kidney involvement, I have to be sure there is not other things in the candy. Sugar free peppermints, don't even taste sugar free, so if you are diabetic they might be a good option. There are dry mouth lozenges, over the counter, that I also carry for severe dry mouth only. I do not want to get used to them. Rinse your mouth frequently, if needed, and of course brush and take care of your teeth. Biotin, is an over the counter mouth rinse for dry mouth. I alternate that with regular mouth wash, at least twice a day.

4. There are prescription medications as well. Speak to your doctor about them if you feel you would like them better, or if none of the other options seem to help.

5. Check out the Sjogrens website, for tips on massaging the parotids, using heat, and other great tips. I am leary of heat, personally, only because if you have an abscess tooth, but you think it is your parotids heat might not be a great idea. Discuss with your doctor to be sure.

Saturday, April 1, 2017

April is Sjogrens Awareness Month

As promised, all this month, I will be discussing Sjogrens Syndrome. A disease I have been newly diagnosed with. Well, I still need a definite diagnosis via a salivary biopsy, but that will be soon I hope. My renal doctor is pretty sure that is what it is. So, why am I seeing a kidney doctor? I will get to that. Let's start with some basics first.

Sjogrens Syndrome is an Autoimmune Disorder. That means basically your body attacks itself, primarily through tears and saliva. At least that is where it starts. Those are the first two primary complaints of people who suffer from Sjogrens. They were for me. I have had dry, and so called gritty eyes, for as long as I can remember, at least since my early 20's. I am 47 now. My dryness, and vision issues that went along with it would come and go it seemed. Some days fine, other days not. I have seen eye doctors, and been given reading glasses, but no reason for why my eyes were "dry". Try eye drops was the most popular advice, as no disease of the eyes was seen. I personally figured it could be feasible that due to seasonal allergies, and lots of computer use, maybe allergy meds and tired eyes was just the problem.

However, when I got dry mouth, I would say within the last 5 years, I started to think of other things. Dry mouth is very distracting, it can drive you crazy. You are not really thirsty, but you feel like you have to have a drink. Now even though I didn't start to notice dry mouth until about 5 years ago, I have had issues with my teeth since I was a teen. I shrugged it off as all my family had bad teeth. Dry mouth destroys your teeth. So do a lot of other things, but so does dry mouth. One thing I did not realize, is the actual location of the Parotid Glands. Those are the glands that create saliva. They are located on the side of your face by your ears, down by your lower jaw, under your tongue, and then in other places, but much smaller. I have been suffering from migraines for probably 15 years, or so. About 4 a year, was typical. My point is the locating these migraines would start was right around the front and back of my left ear, and then travel down my neck, and up the side of my head. Right before Obamacare was passed, when insurance companies could still deny you care for pre-existing conditions, I was having an acceleration of migraines, about one every other week. I sought medical attention, and a CT of the head was ordered. My insurance company refused to do it saying some bogus reason, and I believe it was because they considered it a pre-existing condition. Since I didn't have 3500 dollars to pay for it out of my own pocket, I just suffered with it. Eventually they went back to the more normal average of 4 a year. I am now curious if those glands were swollen and that is what was causing the pain. I also have discovered that something that I thought might be a bad tooth, was probably my mandibular gland swollen and painful. This lasts for only about 2-3 days, so it never gets seen by my doctor. It also only happens about every six months. Since I started doing salt water rinses, it seems to help a lot.

How did I end up with a diagnosis of Sjogrens? For years I have thought I might have MS, or some other mystery disease. I had vague, strange symptoms that would seem to come and go with no explanation. I had researched Sjogrens before, as well. In December I was extremely ill, to the point where all I could do was sleep most of the day, or at least do a little bit then need to sleep. My eyes were doing some very strange things, to the point that I refused to drive for about two weeks. I could not really eat, and was very clumsy. I have always been a little clumsy but this was worse. I never had a fever, drank well, created urine, etc. No vomiting or diarrhea, etc. I thought I just had the flu because we had been so busy and I felt worn out around Christmas. After about a week I thought, wow this is some flu. I haven't had the flu in over 10 years, so I figured I was older maybe it was worse. Finally I told my husband I felt like I needed to be seen. My labs were off the wall weird, and it appeared I had some kind of kidney involvement. I was referred to a kidney doctor who said I have basically only one kidney working well. There is no absolute proof that Sjogrens caused the kidney issue, but it is highly suggestive. Since Sjogrens can attack other organs, especially for those with Primary Sjogrens, it is very probable. They also can not tell me how long my kidney was not working properly, but they can say it did not happen quickly. So, my focus for the month of April will be Sjogrens with kidney involvement. There are a lot of things I have had to learn about keeping my good kidney healthy, and since we live in Florida, I have to now prepare differently for hurricane season. I will be sharing all this info, plus basic Sjogrens info.

For now I want to let you know the symptoms of Sjogrens. I have had all of these, but they are not constant for me, especially the dry cough, and joint pain. To find more information about Sjogrens, visit the Sjogrens Syndrome Foundation. Please if you have any of these symptoms, along with dry eyes, and or dry mouth, please seek out your doctor to discuss. Do not take any info in this blog to be medical advice, it is not. It is information, to help increase awareness and knowledge of the disease. Anything that I try, or have done, since being diagnosed is under the approval of my doctor only. 4 million people have Sjogrens, but not many people know about it, and doctors don't either, which might be why it takes so long to get a diagnosis. Be persistent, and be an advocate for yourself. My doctor thought of Sjogrens right away when she heard I had dry eyes, and mouth, but has never had an actual Sjogrens patient.

1. Dry eyes and mouth, as I stated are the two most common early complaints.

2. Joint pain

3. Dry skin

4. Vaginal dryness

5. dry cough

6. fatigue

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