NOT SURE HOW 2 ACCEPT MY HEALTH STATUS????

Debra - posted on 07/30/2010 ( 18 moms have responded )

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Hi everyone I am 32 yrs old, I have a son that is 14, and 2 girls 11 and 12 yrs of age. I have been dealing with chronic pain for years now and i never went in to find out why I was in so much pain, I guess I really did'nt want to hear what was wrong with me. Then it got to the point i could'nt bare the pain i was in so I went in and I have had series of blood test 24 to be exact. They couldn't figure out what was wrong so at this point I was angry and frustrated. I decided to find another doctor and when I did the outcome wasn't what I wanted to hear let me tell you. I was diagnosed with lupus and fibromalgia almost 3 months ago. Addition to that news I was diagnosed with a heart disease called Tacacardia. At this point I was lost and not sure of anything going on around me, 2 weeks later i go see my doc again and she decides to tell me that I have only 40 percent of my liver left that is good. I don't understand how someone my age can have so many health issues, let alone I don't know how to face this or even deal with it. PLEASE HELP!!!!

18 Comments

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Kathleen - posted on 11/16/2010

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First of all, you are not alone. You are a member of an elite group called the Painies - sound like Law & Order? You have been given a brutal blow - but having an answer will help you navigate the system and get the help that you need.
Having pain for a prolonged period can cause alot of different side effects and additional illnesses.
The first thing you need to do is start a journal. A pain diary will help you list off all the appointments, tests, symptoms and such that you will need to remember. You need to be proactive and remember that a dr. is a person and can make a mistake or be an ass. So, if you go into an appt. and they make you feel stupid - don't take it personally - that Dr. isn't a good fit. Find a Dr. that you do like. You know your body better than anyone and you need to listen to it now.
You are not alone, there are alot of us out here and we are going through the same thing. You are not crazy, a junkie, a weakling a whiner or pathetic. You are sick and you need to get better.
Research all you can about your illnesses and find treatement options. Consult your Dr. about what is right for you and what you want to do. Be strong, there are many resources out there, alot more than when it started with me.
Check out my blog at http://chronicpainjournal.wordpress.com. Just take each day at a time.

Fern - posted on 11/05/2010

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@ Amanda, don't give up the disability fight. I won mine after 2 years and several denials!

Amanda - posted on 11/04/2010

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Hello Debra, my name is Amanda im 35 and have three children i live with Fibromyalgia, ventricular tachicardia, thyroid problems, slipped disc with osteoarthritus i also suffer with depresstion and anxiety im in constant pain and i find everyday life a real struggle, I know how you must be feeling cause i feel the same. I have rubbish days then really rubbish days and some days i can't walk. I also try to think possitive and try to walk when i can. My life has completely changed i used to run long distance, sprinting and ballet, also i kept a clean tidy home cooked lovely meals but now over the last year its all slipped down hill rapidly iv had to get a gardener and my mum does my washing and ironing for me but i think what upsets me the most is watching my children do the jobs around the house that i should be doing they say they don't mind but i do. Iv been trying to claim disability but iv been turned down 3 times but im trying again i will not give up i can't work and need help if you ever want to chat im always here your not alone i hope circle of mums helps you like its helping me..
hugs xx
Amanda

Fern - posted on 09/29/2010

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Again a comment I don't agree with, narcotics do NOT tear up your liver. Tylenol can tear up your liver, so stay away from it and anti-inflammatories as these medications are the hardest on the liver. So if you need pain relief, narcotics are actually one of the safer medications to take and if you are worried about addiction, less than 1-2% of chronic pain patients ever become addicted to their medications. You might become physically dependent on them, but that's totally different from addiction. The way to know the difference: chronic pain patients take narcotics so they can participate in life, addicts take pain medications to escape!

Ixchel - posted on 09/29/2010

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well i hopefully can give you some relief, My sister in law has tacacardia and its sontroled with medication. Your liver is and organ that can heal itself if you give it a chance, it is probably tore up from years of self medicating for pain, if you take narcotics which are really bad for the liver it will damage your liver and raise your liver enzymes. Mine have 3x the norm before and I have gotten them back down to normal range. I don't know anything about Lupus. I know about pain though I have had 8 major surgeries in 4 years to repair ventral hernia in my stomach which is now nothing but one big piece of mesh. Problem is the mesh is sewn into the ribcage from side to side. Major pain. I am only 35 so as for the age it happens to the best of us. your best bet is to research and maybe even get a second opinion for treatment options. i wish you all the best.

Fern - posted on 09/21/2010

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I think there are some good suggestions here, but I also think there is a lot of bull here as well. I am a nurse and I have suffered with chronic pain for over 17 years now. I have done lots of research and tried lots of so-called remedies. There is NO cure for fibromyalgia or Lupus and anyone who says there is or tries to convince you the products they are selling will make you so much better are simply trying to make money off your suffering. I ran a fibromyalgia support group online for many years and that's why I had a rule that NO ONE could sell products on the support group list, period! If you want to share something that has helped, fine, but its hard to believe something is a great treatment when the person pushing it is the saleperson. Okay, maybe it helped you, but that does NOT mean it will help everyone! The cause nor the cure for fibro or Lupus have been found yet.

Okay, I am done preaching. Here are my tips:
1) Pace yourself! Pushing too hard on good days only sends you into a flare that might last days or weeks. Therefore, its much better to keep up a steady pace.
2) Keep a positive attitude. Being down on yourself and feeling like you are dying are only going to drag you down. You need to focus on what you do have, what you can do, and what you want for your future. These can all help you stay upbeat and keep depression from setting in.
3) Be your own advocate. Do your research and make sure you know which treatments are appealing and make sense to your situation. Then go to your doctors and make suggestions, ask questions, and get actively involved in your treatment plan.
4) BE VERY CAREFUL WITH SUPPLEMENTS, NATURAL TREATMENTS, & VITAMINS! Many of the so-called natural treatments contain contaminants (because their manufacturing processes are not monitored by any agency) and these can make you much worse. And many of the health treatments out there can damage your liver if you are not very careful, which in your case could be deadly!
5) Accept your situation as best as you can. That doesn't mean you need to accept a death sentence, but that you need to grieve the life you expected to have and accept your limitations.
6) FIND AN APPROPRIATE SUPPORT GROUP! There are lots of groups out there. Only you can decide which ones are right for you, but I do highly recommend dailystrength.com, because they have support groups for just about every illness out there. You need to connect with people who are suffering similar problems to yours, so you don't feel so alone and isolated! I am the Online Support Coordinator for the Richmond Fibromyalgia & Chronic Pain Association. It just helps to have others who understand what you are going through. Please feel free to PM me if you want to talk further!

Mandy - posted on 09/13/2010

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Please know that you are prayed for and thought of... I know how hard it can be coping with chronic illness and chronic pain as well as waiting for answers that never seem to come quickly enough and at times not at all.
A few important things unrelated to medications and supplements:
1. I agree with everyone else, a healthy diet is important to everyone, especially those of us with compromised immune systems. Don't beat yourself up if you aren't perfect at it though either.
2. Physical activity whenever you are able. There will be days you will not be able to be as physically active as others. Whenever you can though, get out in the fresh air and get moving. Yoga can be very good for fibromyalgia - be sure to check into any contraindications to any yoga positions before doing them however. Walking in nature is very comforting and healing for me, you may find the same is true for you.
3. Play... yes, I said play. Be a kid again - find something fun to do whether art, crafts, being outdoors, music, dancing, whatever holds your interest or curiosity. Finding positive things to do can help significantly with coping.
4. Relax. Find some relaxation instructions on UTube that you like. Listen to a few of them first, some may not suit you, but don't assume none will based on a couple. Or make your own relaxation CD. Progressive relaxation allows you to focus on each part of the body, relaxing it as you move across each area. Eventually your whole body will feel warm and relaxed which can help with coping and pain management.
5. Get in the water. Aquatic therapy can be very helpful for chronic pain and it is low impact because of the water's boyancy.
6. Take time out for yourself. It's hard being a mom juggling all of your other life responsibilities and relationships AND dealing with chronic pain and health issues. Take time for you- read, take a bubble bath, get a massage if you can, etc. Whatever you enjoy...
7. Laugh... and cry... Yes it's important to laugh, find things that are funny to help your body release endorphins... but also allow yourself to cry - you don't always have to be the strong one. Crying can be cleansing, releasing, and help you to cope.
8. Find a buddy, be a buddy... find someone you can relate to who understands what you are going through... and then be there for each other. Support groups can be good too. The key to both options is that they are positive, not simply focused on complaining and negativity.
9. Be your own advocate. Research as much as you can on your conditions and options. Ask questions of your doctors. Let them know you appreciate their work, but that you are also going to do everything you can to ensure you find your path to being as well as possible too - even if it means at times disagreeing with them.
10. Love. Love yourself - give yourself permission not to be Supermom-wife-woman-worker-etc. Love your children - help them to understand that you love them and will be there when they need you, but also help them understand that there are times you will need to rest and take care of yourself and that doesn't change your love for them. Love your neighbor - when you are able even if it's only once a month or once a year find somewhere you can be giving to others who are less fortunate. You can visit a nursing home and help with an activity they are running, help at a homeless shelter, help with a school activity, help at a women's shelter. But know when to say no too. Volunteering can get you out of yourself for a while and make you feel good, but too much of a good thing can become a bad thing.

Sherrel - posted on 09/09/2010

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Hey Ann,

How are you? I pray all is well with you. Ann are you in any brace now that will help relieve the pain off your back. I suffered with lower back pain for over eight years. I wear a medical grade brace that relieves me of my pack pain I also take natural supplement that helps a great deal. I no longer have crucial back pain anymore. My legs don't swell like they use to. My sister begged me to try a new method because I was in consistent pain & the meds made me even sicker & I'm glad I listened to her this time. Contact me I'll pray with you & share with you what I use. Send me a message via facebook or you can inbox me. Until we speak stay bless & make it a great day.....To your feeling great, Sherrel

Anna - posted on 09/08/2010

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Hang in there Debra it is hard being young and sick. I know I'm 30years old and found out I had MS when I was 18 that was hard to deal with then a few years later i was told I had degeneration of the disks in my spine. I had back surgery to fix my back it lasted about 3 years. Now I'm having more back problems. In the last year I found out I had arthritis in most of my joints and now have Fibromyalgia. It can be very hard somethings and I feel alone sometimes but I have a great husband and family, that does help. Talking with others that have been threw it before also help's. I did a lot of research on my medical problems and found things that make my symptoms manageable . I wish you luck and if you would like to talk send me a message on facebook.

Sherrel - posted on 09/03/2010

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Hi Debra,
This is Fantastic Friday! Increase your Faith & Decrease your Fear. You can do all things through Christ that strengthens YOU. Ask me how I know, see Debra not too many months ago the doctors gave me all kinds of diagnosis & being a mom of 4 children & my parents are dead, I dreaded the fact to think I would not be here or have enough strength to raise them. I was being robbed of my strength daily not being able to get out of bed to clean my house, cook food for my family, help my children with their homework & please don't let them have any extra cirrricular activities I struggled to go & was in pain the entire time I sat there. There is a solution to what you are going through. Debra I would love for you to connect with me on Sat. Sept 4,2010 @ 9am. Call 218-936-4141 pin 9531138. I would like to personally pray with you, while my prayer partners touch & agree with you for your healing. I would also like to share some natural product that I know will be beneficial to you. You can have your Life Back.

Sherrel - posted on 08/29/2010

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Hi Debra,

I will keep you in my prayers, I also have 4 children, 16, 14, 13, &9. I suffered with a lot of pain for years. The doctors told me I had fibromalgia, breast cancer, lupus, and they just couldn't figure out what all this pain was about. I refused to take the diagnosis, I kept saying Lord you promised me good health & I stood on what the Bible say's about me being healed. I kept going to the doctor & at one point she thought my pain was in my mind. My legs stayed swollen, I started getting headaches, my joints was hurting. Finally my doctor said she would send me to a neurologist & he did several test & come to find out I had none of those diagnosis I had lime disease. It went untreated for years & it started affecting my neurology system. I'm saying get another opinion. Another thing I started drinking this antioxidant it taste good and I take cran aloe, liquid multi-vitamin and a supplement call green 29 they work wonders. My liver count and my pain has decreased tremendously and I have my quality of life back. I will continue to keep you in my prayers. Let's stay connected. I know how it is to be a Mom with kids & can't function to take care of them & everyday you wonder if you will live long enough to see them get grown to take care of themselves. I know God answers prayer. If you want more information about what I did to gain control of my life back contact me or send me a message. I would love to share.

Hannah - posted on 08/18/2010

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honey let me tell you your not the only one. im 19 andi have heart disease, degenerative disc disease in my back and arthritis all over my body i know how you feel. my mother and 16 year old sister have fibromalgia. i completely understand your pain and i am here to talk if you need someone. i know how it felt when i found out all my health problems.

Michelle - posted on 08/16/2010

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Hi Debra,
Unlike the ladies above who are so wonderfully optimistic and forward thinking, I am not yet. I also have had pain most of my life and only recently found out why. I have a son(4yr) and daughter(5m) and found out that they have a 50/50 chance of getting Ehlers Danlos syndrome hypermobility. The jist of that is excessive extension (hypermobility) of the large and small joints which causes a LOT of pain over time. Also I have just found out this morning that I have lupus and am totally stunned. Thank you for posting your feelings because right now I'm really feeling the same way, helpless.
I know from being in pain for more then 10yrs (I'm 29) that it is possible to live through it. It's possible to have FUN and be apart of day to day life. Everyday is a challenge and you have to have a reason to get up and move to meet those challenges. For my personal problem is I don't know how lupus is going to affect me or how it has affected me since it's another inside the body disease that everyone else can't see (I've gotten a lot of "it's all in your head" comments or the one i love "she just wants attention there's nothing wrong with her).
My prayers go out to you and your children that you have a long and full life ahead of all of you. Keep chugging away at life.
Sincerly,
Michelle
ps before you take and "herbal supplements" talk with your doc or pharmacist to make sure how they can/will affect the drugs you are taking (which includes interaction with ibuprofen). The medical problems that you have can be a bad combination with the supplements, I'm saying this from my experience which does not mean in any way that there aren't some supplements that help but get them checked out with your care team.

Jacqueline - posted on 08/11/2010

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Hi Debra,

Many chronic conditions can be improved by simply changing to healthy lifestyle habits such as exercising, eating better, managing your stress/anxiety, losing weight and stopping smoking.

Improving your healthy lifestyle habits can have a positive impact on your situation, and working with your own perosnal health and wellness coach will help you achieve the healthy lifestyle changes to significantly impact your ability to control the advancement of your disease.

Together, we will identify things that you can and are willing to change, and create a meaningful and personalized plan of action that creates success for you.

As a health and wellness coach it is my goal to help you begin and maintain new healthy behaviours that will impove the quality of your life.

I will listen, and help you move in the direction YOU want to go in, without judgment. I will honour your agenda, assist you in finding the most productive direction, hold you accountable to keep you on track. I will help you anticipate and overcome obstacles that threaten to sabotage your plans and dreams. I will cheer you on, but not chew you out. I will be 100% committed to your success and promise to be here for your every ache, pain, tear, and step along the way. I will not give up on you.

To a better health and a brighter future!

Jacqueline Schultz
Health and Wellness Coach
jacqueline@global-health-today.com

Bonnie - posted on 08/10/2010

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Hi Debra. First of all, welcome to Circle of Women. I hope that you will be able to make connections here with other women like yourself, who are experiencing health issues.

I am sorry that you are in such pain. I have had fibromyalgia for about 15 years, so understand some of what you are experiencing. I also recently had brain surgery (June/10) for Trigeminal Neuralgia, and I sometimes feel like you as to why I am having all these health issues. We need to be advocates for ourselves and eat as healthy as we can and look after ourselves to overcome some of the challenges.

I do not sell health and wellness products and you need to do your own research on the many different companies before you decide on one. I was very heavily medicated for years for the fibromyalgia and decided on my own to stop everything and find other ways to deal with the pain. Weather changes and severe cold still seem to have a bad effect, especially in the winter, but for the most part, I don't have FM pain as bad as it was.

I do agree with Crystal that you need to start sending your body positive thoughts and do everything you can to eat healthy. Our bodies were made to run like a well tuned machine if we feed it the right stuff.

There are support groups on line for just about every health issue out there.....just Google it.

I hope that someone else with Tacacardia will post here to make a connection with you. I'm sorry but I don't know anything about it. But, I will keep you in my thoughts and prayers for renewed health.

I am not on here all the time, so if you need someone to talk to, send me a private email here and I will give you my phone number.

In friendship,

Bonnie Gray

Crystal - posted on 08/06/2010

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Hi Debra, I actually could not wait until tomorrow to give you product suggestions. I am so excited at the possibility of being able to help you gain some relief. I don’t know which symptoms you suffer from so I will try to take the known symptoms of fibromalgia, lupus and tachycardia and suggest nutritional supplements that may help in the relief of the symptoms. Please note, I am not a doctor, (and I don not play one on TV…smile). I am an advocate of good health and it is my personal mission to help as many people get healthy as possible. I am a distributor of nutritional products and share the products with people dealing with all kinds of medical issues.

Central
-headaches - Memory Charge
-sleep disorders - Levive
-depression, anxiety - Enerlife
-memory and cognitive impairment - Memory Charge

Muscular
-pain, fatigue twitching – Power Boost, Coral Calcium, Triple Lifeline & Ardyss Plus

Joints
-morning stiffness and pain– Power Boost, Coral Calcium, Ardyss Plus

Urinary
-problems urinating – Cran Aloe

Systemic
-pain – Coral calcium, Levive, Ardyss Plus, Power Boost, Triple Lifeline
-weight gain – Levive, Nutri Shake
-cold symptoms - Levive

Vision – Levive

Poor Circulation in fingers & toes – Power Boost

Heart Disease – Levive, Triple LifeLine, Mangostana, Coral Calcium, Memory Charge


Product Suggestions:
All products are organic, all natural and non synthetic.

Levive – Antioxidant drink – organic and all natural. I recommend the Levive Green for you because it is the plant based Antioxidant Drink and is really good for the liver.

Enerlife – a natural energizer made of vitamins and minerals. May help to improve mental ability and reflexes of the nervous system; may help in cases of depression, lack of energy and fatigue.

Cran Aloe – helps with cell regeneration and detoxification of the body; preventative care for urinary tract; provides protection from access stomach acid; can help with gastric problems, ulcers, gastritis and stomach acidity.

Nutri Shake – healthy meal that provides proteins, vitamins and 9 essential amino acids.; natural aid to lose or gain weight; strengthens the immune system; provides calcium and folic acid; helps fight infection caused by bacteria, virus and fungi, provides energy

Ardyss Plus – liquid multi-vitamin which strengthens the immune system, helps with arthritis, arthosis, and osteoporosis; helps to fortify the respiratory system; recommended for sinus, allergy and asthma

Power Boost – tones and strengthen muscles, tendons and lagiments; may help with bone loss and osteoporosis

Triple LifeLine – the Omega 3,6 and 9 fatty acids that are essential; great for heart and arteries; may improve the brain function and help with diabetes; hematomas, depression, arthritis, allergies, poor blood circulation, Alzheimers, skin problems, gout, arrhythmia and many others.

Memory Charge – helps improve cardiovascular circulation; regulate high and low blood pressure; great for headaches and migraines, brain function; memory loss, focus and concentration; relieves insomnia

Please feel free to give me a call at any time if you would like to further discuss your symptoms so I can suggest which product may work best to get you some relief. You can check out all the products listed above on my site www.ardysslife.com/nileadia. Please give me a call if you are interested in just talking and or purchasing (to ensure you get the wholesale prices).

Also, listen to the recording of the Doctors Conferenc call – this particular talks about the importance of Antioxidants. The number is 712-432-1085 and the access code is 324522.

Debra, I hope that anything I have written here helps you. One day and one step at a time.

Remember, we control our destinies. Keep your head up and you have a friend here.

Crystal

Crystal - posted on 08/06/2010

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Hi Debra, first of all let me say that I am praying for you. You are right, no one should have to suffer with those types of health problems.

I will post again this weekend with some nutritional supplement information that may help with your issues. In the mean time, I want to suggest something that you can start right after you read this post.

Our thoughts are the most powerful thing we possess. Start telling yourself, EVERYDAY, as many times throughout the day as you can, that you feel your body healing. Try this 'I feel my body and my liver healing, my heart is strong. My body is healed, my body is healed'. (you can come up with your own but start this process immediately). No longer claim, that you suffer from these conditions. Only that you are healed.

Train your mind to do this as many times a day as you can. Say it when you first awake in the morning and 100 times throughout the day. When you do that you are putting out frequencies and focusing on what you want your body to do. You also start to focus on the positive (not the negatives) and as you do that your body will start to respond. You MUST have unwavering FAITH that you are healed and your body will respond.

Also, watch as many funny movies and TV shows as you can. Make sure you laugh as often as you can. Laughter is really good for you.

This may sound corny or crazy to you but believe me, your body will respond.

You can check me out on FaceBook and you can check out my Health Revolution page on FB as well.

Again, I will post some nutritional supplements that may help with your conditions but start immediately with the positive thoughts.

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