I SUFFERED and found help........wanted to share

General
1

so I have been sharing *on womens page mostly* all the breakdowns I was having physically ad MENTALLY!!! ugh.

unable to care for my children. missing days and days at work...my husband a single dad.....my blood pressure through the roof-meds NOT working, sinus infection SO SEVERE that spread into lymph nodes in neck....HUGE KNOT in my neck size of golf ball, and all the surrounding tissues. fevers daily.

lets just say its been HELL.

for those who don't know, I have had lupus since birth....undiagnosed. diagnosed since 2003. seeing one of the best doctors here in AZ but he is mean as hell. (no offense)

I found a regular family doctor who is a D.O.

she is my age (30). and she is amazing regardless of her age.

She listens. she read through years of reports and lab work from my rheumy, and hospital visits... and she is working WITH me to get healthy.

I was released from work for 6 weeks. they said NO way...stop everything now... I was in such horrible shape. the fibromyalgia was out of control. causing SEVERE depression, and MASSIVE ANXIETY when you cant meet the needs of your family.

I started having anxiety attacks.....without realizing.

long story short.

My regular doc, my rheumy, therapist, psychiatrist are all working together to get me back to healthy.

I take one med for blood pressure, 1 med for anxiety, 1 med for depression, 1 med for fibro, 1 med for sleep, benlysta *chemo type med or lupus....and pain meds if needed.

this was a desperate act to save my life.

But with my doctors help.....I have already reduced high doses of these meds. and soon will be eliminating one med at a time.....

I have started natural healing and therapy with seeing a counselor who used to be a nurse and is familiar with chronic illness...she is helping with anxiety issue. my D.O. gives me 2 osteopathic manipulation therapy treatments a week.

I am off antibiotics...and due to my D.O......she has helped remove the infection out of my neck and to flow out where it should. I am drinking tons of water. eating lots of raw food....and yogurt....*stupid yeast infections from AUGMENTIN 875mg* uggh

and TOMORROW is my first benlysta treatment for LUPUS in 2 months. they refused my treatments due to my infections and illness outside of lupus.

so tomorrow is a big day for me... I get my first BENLYSTA treatment in 2 months.

I wet back to work MONDAY.

and I am learning the very fine balance with SLEEP and WATER overload...and HEALTHY FOOD...and movement.

I am encouraged and feeling strong again in my spirit and my internal strength has returned.

I enjoy life again.

I am fighting with everything within me this round I will be free of all these meds before year is over.

I have lived once meds free...and even if I cant go total meds free....I am going the healthy route. I am determined.

I stay away from sugar. and acid products. I do not take any vitamins as my liver is already showing signs of major overload.

just wanted to share with you all....

depression...anxiety....hopelessness ..pain EVERYDAY.....fear.....despair......the inability to take care of yourself or others IS REAL....and there is help.

YOU DONT HAVE TO SUFFER. THERE IS HELP OUT THERE FOR A BETTER LIFE EVEN WITH LUPUS.

2

I’m happy for you and your recovery from being so ill for so long. I pray that it keeps moving forward and getting better for you. Thank you for posting. I feel more confidant in my health improving now. You also made me rethink my options regarding nutrition. Keep us posted on your progress.

-Jenny-

3

Thank Jennifer, I will. and again I have only been feelingwell or function well for a short time of 1-2 weeks. but this steady improvement...not going backward. taking care of my needs before anyone elses.,... its a mental thing we must learn. once we deplete....and it happens so fast...we have nothing left to give anybdy. so that's where I sleep regardless of whats happening. I say yes when I can. I mean no when I say it. and don't feel bad for my choices.

I am joing a arthritis aquatics group soon weekly mornings.... I am embarrassed and feel weird but that's just social fear. I know it will do my body well. :)

natural healing from the inside out...then mixed with regular meds can be so helpful.

and finding the right doctor also.

I have been through hell and back...and I finally found a doctor who cares about my wellbeing who laughs with me... and listens so well. and who actually read my paperwork. WHOA! is this real. LOL
--Cynthia


Jennifer said:

I'm happy for you and your recovery from being so ill for so long. I pray that it keeps moving forward and getting better for you. Thank you for posting. I feel more confidant in my health improving now. You also made me rethink my options regarding nutrition. Keep us posted on your progress.

-Jenny-
4

God Bless your long journey. Thank you so much for sharing your story and progress. I have a lot of similarities although I am about 36 years older. It sound like you are blessed to have all the right ingredients right now and I pray it keeps going well. You already know though that there may be a time when you experience a flare up…just the insidious way of lupus…but it doesn’t mean it undo undoes all the progress you’ve made. Keep sharing. We are here for you. Rooting for you, cheering you on. Would love to know how the Benlysta works for you. Take care, love &Pace ~Maré

5

i am happy for you that you are better, thanks for sharing this with us, i had a very very bad day yesterday and i just wonder if things will ever be the same, the first part of your forum is where im at now, lost my job, lost my husband of 17 years due to this (he was abusive-best thing that ever happened to me, he was making me sicker) lost my childrens confidence and trust due to illness they did not understand. I know where you were at, i am there now, my boys have grown and i found a really good man who has my back and i am just praying my rheumy helps me when i see her next week cause i am a mess, please think of me and i will think of you, kel

6

I totally agree MARE, when flares come.....don't lose the progress.

Flutterbymare said:

God Bless your long journey. Thank you so much for sharing your story and progress. I have a lot of similarities although I am about 36 years older. It sound like you are blessed to have all the right ingredients right now and I pray it keeps going well. You already know though that there may be a time when you experience a flare up...just the insidious way of lupus...but it doesn't mean it undo undoes all the progress you've made. Keep sharing. We are here for you. Rooting for you, cheering you on. Would love to know how the Benlysta works for you. Take care, love &Pace ~Maré
7

Christy I agree...processed items I believe add to oint ppain anf ovveravtibr immimf r tgigg=r

Christy said:

What a wonderful post and thanks for sharing.
You've had quite a journey.
Taking care of our bodies is sooo important , while it may not cure us healthy eating should play a roll.

I knew someone who was concerned about their husband he had a lot of pains and displayed symptoms of Ms. He took processed foods and sugar out of his diet and the pain is gone.
Not saying for sure that will happen but maybe it will help us mentally and physically.
Again, thanks for sharing and have a blessed day!!!!
8

You have been on a rough journey and I am glad you see the light at the end of he tunnel finally. Kel you will see it someday just like I will and many, many others. I am so proud of everyone here and I also know that all of you are proud of me and everyone else too. That is what is so good about this group. We are strong because of lupus and many other things. GO fellow Lupies!

9

Thank you for your encouraging post. I am VERY happy for you. Keep on moving forward. :)

10

I want to echo everyone else by saying thank you for sharing such encouragement! I hope everyone who reads it takes it to heart and remembers it on especially hard days...there is hope for all of us!

11

hi Kel.........I know tat place your in....in fact many ladies on here do. and yes while it is very important to get help for the lupus...to calm it down...slow it down..... it is important to get help for our minds. we have so much struggle and battling and guilt and let down...and faith loss... and brokenness that weighs so heavily on our heart and MIND. so while you get help from your rheumy..... consider seeing your reg doc about signs of depression and or maybe a therapy session where you can be uplifted and built up again in your heart and in your mind.

I waited too long to et help for depression. and constant pain... usually causes depression and also PTSD. yup PTSD. my therapist, my psycholist dr both said the same thing. that sometimes the muscles in your mind need a break and need some help. more than a little sunshine.

so anyhoooo....I rant on to say..never be embarrassed orashamed... because ur the one suffering...ur life is changed...not the outsiders... seek help....outside of JUST rheumy...and I believe u will find it.

I plan on starting a beginners yoda class for meditation and stretch...and also arthritis aqua fitness ...easy on the body. because I know these things are for me...and will strengthen my mind.

I do so much for everyone else ...and it is TIME for ME to think of ME first. and I have no guilt in that. but the therapy helped me with that anxiety portion......I don't cry anymore but once every 2 weeks. lol. I was crying all day everyday at one point. chest hurting from the stress and panic inside. the helpless feeling. my my. the burden is so heavy/

I am thinking of you ...and hope you fight ..for yourself...and go go go until u find relief...don't let one doctorexperience turn you away from searching for the right help. you will find it if you search hard. my journey is not over......but I am on a new journey of healing the other parts of e that lupus has been destroying. my mind, and heart. and love for life. and my hope.

--much love...and gentle BIG hug.

cynthia

kel said:

i am happy for you that you are better, thanks for sharing this with us, i had a very very bad day yesterday and i just wonder if things will ever be the same, the first part of your forum is where im at now, lost my job, lost my husband of 17 years due to this (he was abusive-best thing that ever happened to me, he was making me sicker) lost my childrens confidence and trust due to illness they did not understand. I know where you were at, i am there now, my boys have grown and i found a really good man who has my back and i am just praying my rheumy helps me when i see her next week cause i am a mess, please think of me and i will think of you, kel

12

yes......moving forward...fighting for it



S said:

Thank you for your encouraging post. I am VERY happy for you. Keep on moving forward. :)

13

thanks JerseyGirl...... I know my hard days will come...but I am stronger now... on the inside to handle them. lupus really tries to steal our very best parts. our hope, inner strength, participation in loving and laughing with others, social times, our minds ability to think and make wise choices.

I think what I finally understand after so many years..... I must protect the things my rheumy cant.

I must protect my special parts that make me "me" .......the things that are not tangible.

--thank you for tons of support and genuine care.

cynthia

JerseyGirl said:

I want to echo everyone else by saying thank you for sharing such encouragement! I hope everyone who reads it takes it to heart and remembers it on especially hard days...there is hope for all of us!

14

I just had my benlysta infusion today... YEY!!! I have been on it since JAN..... but had to skip 2 month due to infection.

I love the benlysta. for my body it takes away joint pain. I amonly left with some fatigue,usually at night at end of day. the benlysta keeps me from having to take too much meds. also seeking help for depression helped. didn't even know I was depressed. they put me on some meds and my whole energy boosted up and I felt like myself. I had no clue I sffered from depression.

but yes for me I understand the risk with benlysta.. but the benefits for my daily life outways the risk.



Flutterbymare said:

God Bless your long journey. Thank you so much for sharing your story and progress. I have a lot of similarities although I am about 36 years older. It sound like you are blessed to have all the right ingredients right now and I pray it keeps going well. You already know though that there may be a time when you experience a flare up...just the insidious way of lupus...but it doesn't mean it undo undoes all the progress you've made. Keep sharing. We are here for you. Rooting for you, cheering you on. Would love to know how the Benlysta works for you. Take care, love &Pace ~Maré
15

I replied to everyone personally...so please scroll through these replies:) lol.

But just want to reiterate that sometimes lupus will affect other parts of your body...your mind, your smile, your will, your hope, your participation in giving and receiving GENUINE love.....

so when the moments that are so precious stop arriving through out your day.... please know is time to get help on the effects of lupus. the damage its cause in everyday pain or sadness or lack of will or hope or even LOSS> how many of us feel LOSS? my goodness.

so when I saught mental health also........ it awakened my spirit ..my inner strength...and I am once again caring for my little offspring... who is 5 and almost 7. LOL! getting tough summer activities while working sun-wed. almost 30 hours

and getting alternative medicine treatments...and focusingon ME. I have nothing to give anymore if I am not well.

I am my first priority now. which is so weird to say-- when we have kids...they are our first priority.

well with lupus.... that cannot be. u must put your life mask on before yu can put their life mask on.

:)

love to all.....and I so so sososososossoossosoo appreciate the support.

this is where I turn on my bad days....and also -- will do better at sharing the good days! there are many more now.

16

Hello, I am so keeping you in my prayers. Your story was very touching i got goose bumps in my soul. I am happy you are coming off some of these meds. I had lupus for 21 yrs diagnosed at 19 now 42 and it's only been in my older years that lupus has become more active.

You are right their is help out their. We have to begin with ourselves because lupus will try to steal your life away. I to know what it felt like to be depressed, hopeless, feeling unworthy and not being able to take care my ADHD teenage son like i normally would. You have to keep positive no matter what. I look at my children and they are my why to fight.

If and when you are feeling down incorporate self development into your life style. I am a personal empowerment coach and i live self development everyday of my life. Read a book, download a free ebook, go to the library and browse the self development section and just start giving more to yourself and learning more about yourself and you won't believe how new you begin to feel. You begin feeling more confident and able to conquer fear that you would normally avoid.

Even as a coach and being a Lupus survivor I have mentors and I continue to keep my self rejuvenated by self development practice. I find that I am more aware of who I am and where i want to be. I make better decisions and able to cope with things better like lupus. When you are self developed it doesn't matter what is going on in your life you can move past it and move forward. Now you are human i'm not saying you will be a brick wall but you will be able to see your future an goals and began putting forth efforts to reach them instead of always worrying about not being here long eneough to see the future. Know that you design your life go get it..

Remember you have unlimited value never underestimate your worth.... Lupus may be a part of our lives but it doesn't have to live our lives. You keep fighting, encouraging and spreading awareness. You are a gem...GOD BLESS

17

same goose bumps reading your reply Coach Kisha N.

I believe and support everything you just said, it does not have to strip everything away from us. and when we start seeing that it does. refocus......on self development...and empowerment to pull your way through. that's what I am hearing you say. is that right?

funny thing is the therapist is see used to be a RN and because of her allergies she had to quit nursing and she went on into counseling an her practice is called the empowerment group. that's awesome. we are all connected in our fight to be our best self!

more good news soon

my endeavors are in front of me. I am trying to not go overboard and find myself overwhelmed. but there are some things I want to do immediately. and some things that will take time.

Thank you for blessing me and sending your prayers and positive energy my way,

the same for you and your family. wishing you strength in your day to day life and much laughter to help you through,

--gentle hugs....Cynthia in Hot ARIZONA

Coach Kisha Nicole said:

Hello, I am so keeping you in my prayers. Your story was very touching i got goose bumps in my soul. I am happy you are coming off some of these meds. I had lupus for 21 yrs diagnosed at 19 now 42 and it's only been in my older years that lupus has become more active.

You are right their is help out their. We have to begin with ourselves because lupus will try to steal your life away. I to know what it felt like to be depressed, hopeless, feeling unworthy and not being able to take care my ADHD teenage son like i normally would. You have to keep positive no matter what. I look at my children and they are my why to fight.

If and when you are feeling down incorporate self development into your life style. I am a personal empowerment coach and i live self development everyday of my life. Read a book, download a free ebook, go to the library and browse the self development section and just start giving more to yourself and learning more about yourself and you won't believe how new you begin to feel. You begin feeling more confident and able to conquer fear that you would normally avoid.

Even as a coach and being a Lupus survivor I have mentors and I continue to keep my self rejuvenated by self development practice. I find that I am more aware of who I am and where i want to be. I make better decisions and able to cope with things better like lupus. When you are self developed it doesn't matter what is going on in your life you can move past it and move forward. Now you are human i'm not saying you will be a brick wall but you will be able to see your future an goals and began putting forth efforts to reach them instead of always worrying about not being here long eneough to see the future. Know that you design your life go get it..

Remember you have unlimited value never underestimate your worth.... Lupus may be a part of our lives but it doesn't have to live our lives. You keep fighting, encouraging and spreading awareness. You are a gem...GOD BLESS

18

Thank you so much for sharing your journey with us.What an inspirational post.Im not sure i have the words to say how we all relate in one way or another and to hear you are healing in so awesome & hopeful***Many Blessings To You**Hugs~xo

btw...Can i ask what doc you go to as im in phoenix as well?

19

I’m sorry about your children. Not sorry about the husband, good bye and good riddens to him. I don’t work anymore, and I understand the loss of a career. This is day 3 in bed for me. It’s so hard to explain the fatigue to anyone. I had 3 GREAT days before these 3 awful days. Without the support of a really good man, I would probably be headed to the looney bin :slight_smile:




kel said:

i am happy for you that you are better, thanks for sharing this with us, i had a very very bad day yesterday and i just wonder if things will ever be the same, the first part of your forum is where im at now, lost my job, lost my husband of 17 years due to this (he was abusive-best thing that ever happened to me, he was making me sicker) lost my childrens confidence and trust due to illness they did not understand. I know where you were at, i am there now, my boys have grown and i found a really good man who has my back and i am just praying my rheumy helps me when i see her next week cause i am a mess, please think of me and i will think of you, kel

20

As you know, I will always be here for you regardless of your current physical or mental state. You are now an inspiration to others that have felt many of the same things...I am so proud of you for being brave enough to share!

XOXO,

DeAnne