New here = and struggling with this disease- sorry this is long

[amazonchick]

Hi everyone.. I was diagnosed with Sjogrens 6 years ago, but realized Ive had it most of my life.. I'm a 44 yr old single mom, with 2 daughters (ages 25 & 14). I am also diagnosed with Fibromyalgia, CFS,Depression, PTSD, Anxiety, GERD, and IBS. I've had to have a complete hysterectomy , gallbladder removed, appendix removed, lympnode biopsy, and 15 teeth removed.I'm a very independent, hardheaded country girl from Oklahoma.. Ive raised my girls by myself and have always pushed through the pain and problems.. But my body has decided that its not gonna let me do that anymore.. and I am NOT dealing with it very well..  Everyday is a constant battle.. "something" happened last December.. I don't know what.. but I just started getting worse.. By Feb. of this year, I was not able to work. I have daily joint / muscle pain. I am beyond exhausted. Headaches, heartburn, insomnia, dry eyes (had to stop wearing contacts about 5 years ago), dry nose, dry mouth ( teeth are rotting out of my head ! ) I get winded doing household chores, so I have to stop and rest several times a day IF I'm able to get out of bed. Brain fog is driving me nuts..Depression and Anxiety are worsening because I haven't had a job since Feb.. My mom is helping me with bills but is getting tired of it.. She has a rent house she lets me live in.. without her, i would be homeless. Ive applied for Disability but  it takes time. I have no insurance. I feel like I'm at the end of my rope... Its a vicious cycle that you never know how your going to feel from day to day... I don't take prescription drugs due to worsening side effects.. I am going the Natural route.. am trying to switch to a whole food plant based diet but cant afford it half the time.. I get $300 a month on Food Stamps for myself and my youngest daughter.  The hardest part about this disease, is how its affecting my mom and my girls.. They don't really understand it, and think I'm not trying hard enough.. they miss the "old", "normal" me... I've become like a recluse.. I'm from a really small town.. my parents were prominent people.. everybody knows everybody here.. and I used to be something ! Lol  Outgoing, full of life... now, I'm 50 pounds heavier, look worn out and tired and I don't like people looking at me thinking " what happened to her??"  I cant work, so I don't have money for doctors... my Doc wants to send me to a specialist.. cant do that or pay my bills.. and the people I count on the most, are getting sick and tired of ME being sick and tired..  I don't know what to do.. ..  WHEW ! that makes me feel a little better !! Thanks for letting me vent.. Now what do I do   lol   Thanks for listening and any advice would be appreciated.

[Suze]

Hello Amazonchick,

It's good that you wrote. You will get support here. I just joined, and it seems really great.

I wonder if you have had the blood tests for celiac disease. I think you wrote that you have IBS, which suggests you have gastrointestinal symptoms. Celiac disease presents in many different ways and is often missed. My celiac disease was discovered by a neurologist who saw me for brain fog and trouble with balance. I'm sure I had celiac disease for many years before it was diagnosed. I wish I had known sooner, but I don't think about that too much.

It is important to continue eating gluten before having the tests, otherwise one can have a false negative result. And it is important to know if one has celiac before going gluten free because the celiac version of the gluten free diet is very different than for people with gluten intolerance.

Take care,
Suze

[Cassi307]

My heart goes out to you Amazonchick. You are not alone in trying to cope with SJS. It will help to vent in a safe place and to hear how others cope. There are people on this board who will be able to share the natural remedies that work for them. Keep in mind that many treatments do not work overnight and will require patience. The fatigue is hard to deal with so I understand how hard it is to keep up with daily activities. I have begun to have muscle weakness that adds to the fatigue.

Have you applied for Medicaid or do you have to wait until you are approved for disability? Your best care should be with a rheumatologist.

I know this is difficult but maybe you can sit down with your mother and daughter and give them articles on Sjogren's. you can get great info from the Sjogren's Foundation website and if you go to Amazon you can find some great books to help. There is a link to those books on this website.

Sending support your way.

[quietdynamics]

Hello amazonchick, Happy that you found us,

I was minding my own business, a single mom, raising two children...when I "hit a brick wall"  So I relate to what you posted

It is good to go 'natural'...but, let me put it this way..if your child needed insulin for diabetes..you would take care of it. So take care of yourself.
Plaquinel is really our first line of defense. Read the posts here of how it has helped people get some of their life back for themselves and their family.

Here is a GREAT resrouce:
2-1-1 provides free and confidential information and referral. Call 2-1-1 for help with food, housing, employment, health care, counseling and more.   Learn more about your local 2-1-1 by looking it up here. (You may be able to get some family counseling for you and you 14 year old)
http://www.211.org/

Health Care?
http://www.benefits.gov/benefits/benefit-details/1638

[finallyadx]

Dear Amazonchick - so very sorry to hear about your struggles and frustrations.

I, too, can totally relate.  I have three young children and a husband and for a few years they watched my health and me deteriorate - with no answers as to why.  I think my husband was tired of me being sick and tired all the time.  Then I lost my mother a year ago and my dr thought I was depressed and this is why I was "sick".  So I had to switch drs twice before I found someone who had the knowledge, resources, time and patience to dig deep and find out what I had and what the best treatment was for me.   I had tests upon tests and thought I could not possibly have enough blood to give yet again and then this January - the diagnosis I had been waiting for, or so I thought.  I was relieved to have a diagnosis but then when I read up on sjogrens I was less than pleased.  I was at my wits end - my family and friends did not know how to support me, so I reached out to this forum and found support, comfort and knowledge.  You will find allot of support, knowledge and comfort here.

I understand your wanting to go the natural route, I do, however, for many the natural route does not work or relieve any symptos that are so very bothersome to you on a daily basis.  I am not one for medication but I finally relented and started plaquenil per my rheumatologists advice and six months later I am feeling better many days...I have more good days than bad and that is something with this disease!  Do I still flare?  YES...do I still have "bad" days where I feel horrible?  YES, but I have many more good days then I did a year ago.  I also take Vitamin D and take iron supplements and b vitamins.  I understand your lack of resources due to no insurance, but there must be a hospital that has "charity care" is what it is called in this area where they do not charge you for the services they provide but you still get the best care possible at the best places - you just have to be willing to provide your financial information to them.  Someone else mentioned medicaid I believe?  You should try for any and all assistance you can obtain.  If you can get some help financially then maybe you can get the medication and the healthcare support you so very much need and deserve.  You need to feel better for yourself but also for your children and your family. 

I know how hard it is for you - I do - I was in a similar situation as you a year ago.  But, there is hope and there is help and there is a light at the end of the tunnel.  With autoimmune there is always something and there are no miracle "cures" but there are medications, natural remedies, supplements, etc. that can help you manage your symptoms.  Please try to get some financial assistance so that you can get the help you need.

Also, look online for the spoon theory and print it out and give it to those around you who seem lost about your situation and who are not necessarily as supportive as they should be. 

Hang in there and check back with us again soon.

Sending positive thoughts and prayers your way.

[Dee]

I didn't even know that my prior post had posted, I wasn't done writing, anyway it was a book, short short version below:

I am not a doctor and only relaying what has worked for me:

I was able to get my GERD under control by taking Prilosec in the morning and Zantac at night for quite a few months along with a diet of liquid and easy to digest foods over several months.  Along with the usual raise the head of the bed, do not eat before bed... Now I just take Zantac as needed.

Gluten free diet helped my IBS type issues, not completely but ALOT, enough to have remained so for over 5 years.  You may want to go gluten free for two weeks as the testing isn't always accurate.  If you notice a night and day improvement, voila!

Vitamin B12 and D might help alleviate some of your fatigue and joint pain. 

I recently purchased some phytoestrogen cream ($22).   I only use half of recommended dosage.  I was prompted by my online research about estrogen and autoimmune disease.   

You are understandably overwhelmed. Focus on yourself and feeling better. 

A prednisone taper may help you initially and bring you some immediate relief and some energy or maybe a depo-medrol shot.

I prefer to do what I can without the meds, but hey, at the end of the day, it is what helps us get through the day, feel better, function, slow progression, stop damage, etc.  I have not been successful in completely staying off of the meds but I have had some good runs.

Oops, this was supposed to be short, short version, well it kinda is.

Take good care,
Dee

[Joe S.]

While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.

Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.

You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.

I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.

2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.

3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.

With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.

Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.

I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.

Sip-Swish-Swallow are the three Ss of Sjogrens.

[Suze]

Joe S., is this advice posted anywhere on this site where we can find it if we need it? I don't know how I would search for it if I wanted to read it again. I'm too tired etc etc to think of how I would do that...

[sjenny]

Amazonchick:

If you need help with prescription medicine - there is a website called RXAssist with forms you can fill out - for example for Restasis for dry eye - patient assistance programs from the manufacturer for patients who could not otherwise afford the medication.

Also, try going gluten free - I think a lot of us have "leaky gut" from modern wheat which leads to autoimmune inflammation.

We understand how exhausting this miserable syndrome is - even if people who look at us, don't get it.

Sjenny

[4Kids]

Hi and welcome.  We are here to help listen and understand what is so hard for others in our world to relate to us about. You can talk here about everything, because someone here has gone through it.

What drugs have you tried?  It has been diagnosed for 8 years, that hopefully will work in your favour. It isn't right that someone and a child should be homeless because you are too sick to work.    

On the natural route,  can you try some grass-fed bone broth to start to heal your gut?  Have you heard of the GAPs diet? Plant based is great but not all think vegan is the way to go, although many certainly do. Removing wheat and sugar from your diet asap will go a long way to helping you feel better but it may not affect your symptoms or disease process.

For most of us Plaquinel is a life saver. I suspect you have tried it.

Hang in there, we are here for you.

Jackie