Thinking of Next Year School Year and Online Education Classes for Kidney Disease

Well, I have been slightly busy this last month.  First my FIL came to visit, then I started back to work, and this past week my sister came to visit from NC,  An update on the Sjogrens Saga.  I saw the Rheumatologist about two weeks ago, hoping to have a lip biopsy to either prove or disprove Sjogrens as the cause of my chronic dry mouth, and eyes.  Just to put it mildly I was not impressed with this doctor.  At first a little standoffish and unfriendly.  However, he did warm up towards the end of the visit.  All my labs were normal, the last set, except for my C3 and C4 which were extremely low.  He said, and I actually agree that there was no way those could be correct, because I would have had other labs that would not be normal, plus I was feeling fine.  He said the lab that my insurance insists I go to does not have quality results.  Great, that is awesome!  He said I could do the test again through his company, and it would only cost 500 dollars as my insurance would not cover it.  Um, no thanks.  Then he told me he does not do the lip biopsy, that I have to see an ENT doctor.  Good grief already!  Another 40 dollars, and that is if my insurance covers it.  So, I have to find that out.  The Rheumatologist said he does not think is is Sjogrens because my labs had all returned to normal., nor does he think it is any Autoimmune Disorder, which I am actually ok with.  Because, I can not take any of the immunosuppressant drugs he would want me to take, one because my kidney can't handle it, and two I work in the medical field.  Having no immune system would not be a good idea.  So, now I wait, again.  This is why people don't go to the doctor, because it is ridiculous the way the system works.  On the renal side, my kidney continues to  improve, though they do not think it will ever regain full functioning capabilities.  The good kidney is holding up well.  I will be doing some of these online kidney classes offered by Davita.  They are free of charge, and you can take live ones if they are near you.  Online just works better for my very busy schedule.

On the homeschool side of my life, we are starting our 4th quarter tomorrow.  DJ is finishing up a very challenging Chemistry two semester course, and will finish up the second half in the fall.  He just really needs a break, so time consuming this class was.  He will complete Geometry over the Summer break, as he started it in February.  I will be registering him for the August SAT, but he does the questions of the day test prep, and so far he has a near perfect score for Reading and Writing, and the Math could still use a little work, but is not horrible.  He is looking at Santa Fe College next Summer or Fall semester.  We have a lot of prepping to do for next year, as it will be his Senior year.  He will be doing most of his classes on FLVs, with the exception of Japanese, and History.  He will do Japanese on Time4Learning, and History will be Greek Mythology, curriculum not chosen yet.  I will be looking at various sources for that, and will share them when I figure it out.

Caitlin will be in 8th grade next year, and this year I have discovered that she very much hates workbooks.  I chose Alpha Omega for her, for this year, and though not challenging she hates them.  Her Saxon textbook, my preferred Math choice, she does not like either.  She wants online Math.  So, we started using Easy Peasy Homeschool, middle school Math, and she is doing quite well.  We will finish up 7th grade Math using Easy Peasy through the Summer months.  Her writing is still not what I want, and I am unsure what to do with that.  My son did not like writing either, but he learned to love it.  I just have to find the right fit for her.  I will be looking at Teachers Pay Teachers for some ideas.  She has changed her mind and wants to do French instead of Spanish, and I will be looking at FLVS for her to do that.  It will be her first time using FLVS, and I think language would be a good place to start.  She absolutely hates History, and since it will be her last year where I can really pick and choose how I want her to learn, I think we will do video and living books on Inventors, famous Women, and Black History for her next year.  I will update as I go, and discover things to use.  I also have to really buckle down and start looking at putting together our portfolios for this school year.  Being sick, and having so much family visit, has thrown me off my normal organization path.  But, I have everything, just need to get it in order.  

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.

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.

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

My Journey to Sjogren's Syndrome

1. As I previously acknowledged I was extremely sick in December.  I have been diagnosed with CKD and Metabolic Acidosis.  My primary doctor tested me for Sjogrens in January.  That test was negative.  When we discovered my blood creatinine was elevated in two different blood tests, I was referred to a Renal doctor.  An US showed one kidney was smaller than the other.  My Renal doctor feels it is from Sjogrens and I need a salivary biopsy to confirm.

So, why did I just bore you to death with personal stuff?  Well for one this is a personal blog, and since my kids are older there isn't much to blog about for homeschool, so I will use as a personal journal, awareness, education, and yes still homeschool stuff too.  

April is Sjogrens Awareness Month.  As such I will be sharing all the info I have been gathering.  What I want to tell you for now is, if you have chronic dry eyes, or mouth these are the very first warning signs of Sjogrens.  If you don't know if you have dry eyes or mouth then you probably don't, because trust me you would notice.  Dry mouth is especially hard to not notice.  Don't let doctors and insurance companies ignore it eithér, keep after them and be an advocate for your own health care.  

I will not give medical advice, and anything I say is not to be interpreted as advice.  I will share my journey, resources and non medical ideas for stress, weight and pain management.  If you suffer with this disease p,ease feel free to leave comments.