My InvisibleSickness

A Balanced Life And Dysautonomia

2011-10-25T14:40:00.000-07:00

It can be difficult for anyone to balance everything in life. But when you have dizziness, fatigue, and many other symptoms from Dysautonomia, prioritizing your activities and taking care of yourself is even more challenging.

Having Dysautonomia may prevent you from doing some of the things you were used to, such as working, taking care of your family, and participating in hobbies and activities you enjoy.” The key is to know your limitations and listen to your body. You may find that you need to schedule in a day or days of rest after certain activities. Or sometimes you’ll need to rearrange your day to put yourself first.

With Dysautonomia, slowing down and doing less can allow you to do more.

When coping with Dysautonomia you should always put yourself first. I know this may be hard because most of us are so use to doing things for others, family and friends even work. In the end the only thing that we are doing is a disservice to ourselves by doing too much. You should try and focus on your own needs, take care of yourself. That maybe lying in bed, reading, maybe even going to a movie(if your really feeling good).

Taking care of yourself will ultimately help you heal. Rest is essential to your healing.

People who are dealing with Dysautonomia should set limits. You should know what those limits are and tell others that you just aren't able to do the things that you use to. You should never feel bad for canceling on an events or saying no to your friends or family.

Keep your options open. If you get an invitation or request to do something, tell the person that you are interested in going but you would like to think about it and you will let them know in 24-48hrs. This way you won't be put on the spot and feel as though you are obligated to do it.
It’s OK to say no. If you’ve scheduled something or said your would be at a certain place and you aren't feeling well enough to go, reschedule. Don’t feel gulity and beat yourself up.
Keep a journal. You may want to record you blood pressure,your heat rate, your activities, food that you've ate, sleeping schedule, and how you feel each day. Doing this may provide you with information on why your symptoms may have been worse on that day.
Negotiate. your spouse or family members to take over certain tasks, such as cooking or cleaning, when you can’t do them. Work with your family and come up with solutions together.

Plan activity during the hours you feel the best.
Don’t be afraid to ask for help. Most eople will usually go out of their way to help. all you gotta do it ask for it. People need to know what you would like them to do for you.

A Letter From Dysautonomia

2011-10-25T13:46:00.000-07:00

First off let me say that I don't know take credit for this letter. I found this letter somewhere on the internet,liked it,and decided to post this on my page. If anyone knows how wrote this please let me know so that I may give them credit.

A LETTER FROM DYSAUTONOMIA

Dear Miserable Human Being,

Hi, my name is Dysautonomia, and I'm an invisible chronic illness. I am now "velcroed" to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to be dizzy and light-headed.
Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you servere Brain Fog.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma.

Well, anyway, I'm here to stay! I hear you're going to see a doctor who can get rid of me. I'm rolling on the floor laughing! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you'll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this "non-disease", you will be put on beta blockers, sleeping pills, and many more pills. You will be told you are suffering from anxiety or depression, told if you just sleep and exercise properly, I will go away. You'll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!

Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you're just having a bad day", or "Well, remember, you cant expect to do the things you used to do 20 years ago," not hearing that you said "20 DAYS ago"! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can't remember what you were going to say next!

In closing, you've probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People With Dysautonomia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, brain fog, the inability to perform the everyday tasks that "normal" people take for granted. Remember, I'm stuck to you like Velcro – and I expect we'll be together for the rest of your life.

Dysautonomia

My Tips For Dealing With Dysautonomia

2011-10-24T16:59:00.000-07:00

I know many people have not visted my website so I have decided to take some info from my tips page and paste it on here. Enjoy!!!

ELIMINATE STRESS FROM YOUR LIFE! I can not say this enough! Stress can increase the severity of all your symptoms, it can make your condition worse and prevent you from feeling better. Yes, life is full of stressful and while there’s no to avoid it completely but there are some things you can do to help.

MUSIC:for me is a huge de-stresser. Calming, quiet, inspirational, or religious music played throughout your home or room.

AROMATHERAPHY:
such as Lavender scented candles or oils are good to use because Lavender has aromatherapy properties that decrease stress.

LAUGHING:Talk to a funny friend, read a funny book, watch a comedy, and etc you get the idea.

Most importantly, surround yourself with positive people that actually care about you, respect your illness, and want to help you feel better. This makes a huge difference.
SLEEP: Even though it is tough for most of us with Dysautonomia I can not tell you enough about the importantce of rest and adequate sleep. You should be getting at least 6 to 9 hours of sleep. Listen to your body, rest and take breaks when needed.

HYDRATE, HYDRATE, HYDRATE!! Drink, drink, drink! Water is the best thing to drink. You should avoid any sugary drinks and caffeinated drinks. Sports beverages like Powerade and Gatorade are good too since they have sodium.

SALT: Salt is usually recommended for most Dysautonomia patients that have Orthostatic Intolerance, POTS, or Neurocardiogenic Syncope. I myself can not do this due to high blood pressure and edema issues. For those of you who do need the extra salt here are my suggestions

salt your foods.
V-8 juices are a great source of sodium and so are sport drinks.
I would NOT recommend taking salt tablets because they cause most of the salt to stay in your abdomen and this could dehydrate you.

SUPPLEMENTS. Every person is different so certain supplements may or may not be right with you. Talk to your Doctor to figure out which supplements are right for you.

Magnesium, Calcium, and a B-Complex (for nerve health, bone and muscle health, and energy) Vitamin C and Zinc (for immune system function), Iron (for those of us that are anemic), and Probiotics or other healthy bacteria that improve the function of the digestive system. I would also get your vitamin D levels checked. I have found out that most POTS patients have a vitamin D deficiency and if you do you should be taking some sort of vitamin D. When buying supplements you should make sure they are of high quality and trusted brand since most supplements are not required to follow FDA regulations.

SUPPORT GROUPS. They are a great way to stay emotionally stable and find comfort in knowing you are not alone. If there is not a support group in your area maybe you can try and start one.

Vist dinet.org and meet others in your area who share your illness. Prayer or help groups in your church. Even online support groups. You could also see a therapist. For me my Therapist and the dinet.org forum have helped me out tremendously.

LIVE life at your OWN pace. Being diagnosed after having lived a “normal” life ,your life can seem so slow. Just know that it is normal to grieve over your “old-self”. I know I did and I still am. You should never feel pressured to keep up with this fast-paced world that we live in.

Being diagnosed with Dysautonomia or any other chronic disease for that matter will require many major lifestyle changes. YOU HAVE to find ways to work around them so that you will not feel down and depressed.
Find new hobbies that are not physically exhausting. Spend time with your family member and friends in a relaxed environment.
Don’t try to please everyone around you by pushing yourself too far or hiding how you really feel. You’re not doing yourself any good. Don’t feel or be embarrassed or ashamed! This illness does NOT define you and who you are. You should count you blessing and be glad because it could be worse. Live you life to the fullest.

Find a QUALIFIED doctor!! This is so important!
I would recommend seeing a specialist in Dysautonomia above anything else. You will receive the best care from a doctor who understands and knows how to treat this disorder.

If you happen to live in or around the Mississippi area please contact me and I can refer you to come really great doctors who have helped me.
Make sure you have a doctor who takes you seriously and is sympathetic towards your condition. YOU have to be your own advocate. ADVOCATE FOR YOURSELF!!!
Be assertive when dealing with your health. Dysautonomia is rare and misdiagnosed often. Most doctors do not know or understand, it’s not their fault. Do your research!! If you feel like you are not getting the right kind of medical treatment then find another doctor.

Don’t get discouraged. Just keep trying, and keep fighting. Have a positive attitude and a positive outlook on life. If you think negative all the time then the worse you will feel. Be thankful for all that you can do in life, don’t dwell on the things that you cannot do. Someone is always much worse off than you are.

For those of you who are religious, HAVE FAITH!!! God has put this in your life for a reason. Know that things will get better; if you put your trust in Jesus he will heal you. He is not limited to the things that he can do. If you don’t have HOPE or FAITH then you will fall. I know if I didn’t not have hope that I will get better than I would just want to give up and quit fighting. Jesus is the healer of all healers.

New Site

2011-10-24T16:52:00.000-07:00

Yes, I know we are in a recession and the majority of us are broke, but if you are able please check out my zazzle website and buy a T-Shirt.

http://www.zazzle.com/dysautonomiadesigns

These are just two of the designs

The Unknown

2011-10-23T16:01:00.000-07:00

Sooo I have not found my reason for having pots. What is behind all of symptoms?? Many people develop pots after a viral or bacterial infections. Others get it after a major trauma or stress in their lives. Pots can be caused by pregnancy or by another illness. Even though my symptoms did not appear till 6months after I gave birth to my son I still believe there is another illness other than fibromyalgia that caused my pots. While doing research(something that I am always doing) I found out pots can be linked to the following:

Fibromyalgia
Chronic fatigue syndrome

Marfan Syndrome

Collagen Imperfecta

Shy-Drager Syndrome

Genetics, as in the case of the Jewish-based Familial Dysautonomia

Pregnancy

Autoimmune Diseases

Parkinson’s Disease

Brain Injury

Physical Trauma

Deconditioning

Viral Illnesses

Chemical/Toxin Exposures

Breast implant surgery

Extreme Stress

*Dysautonomias caused by viral infections, toxic exposures, or trauma often have a rather sudden onset.

I'm pretty sure that there are more. More research needs to be done about this. More doctors need to learn about this disorder. I am so sick of hearing "Oh, you just need to exercise!." "It's all in your head,maybe you should see a psychiatrist," Well I can barely walk without fainting, and I do see a psychiatrist so I'm fine in that area. People that are writing these articles in the New York Times and Huffington Post have no idea about pots. I feel as though they try to "sugar-coat" the symptoms and the severity of this illness. Everyone just blows it off.

I am soo sick of going to my local doctors and being misunderstood and put on more medications, medications just to mask certain issues instead of dealing with problem. The only thing they hear or understand is Tachycardia "Oh, there is medicine you can take that will control that," No,shit Sherlock. Tell me something else I don't know.

I feel as though I know more that the doctor to when it comes to pots. Hopefully I will have at least some of my questions answered. I would like all of them answered but then I would be asking for too much. I hope that more people will understand and learn about this illness, I hope one day that there will be a cure. I hope to a "normal" person again, this kind of "normal" isn't working for me.

I Guess It Could Be Worse??

2011-10-21T14:17:00.000-07:00

I'm currently on Medicaid and I have no more vist left which means I will not be able to go to any doctor till July of next year :'( I am still hurting and if it continues I will have no choice but to go to the E.R. I have really been stressed out lately. I know that this is not good for my pots but I can't help but be stressed.

I have 11 days to come up with 500.00 dollars so that I can go to the doctor in Texas. This is extremely hard since I do not have a job. I hate the fact of having to depend on someone else financially but I have no choice. Most people take alot of what they are capable of doing for granted. I really wish that I could do what I used to. I use to love walking,my children and I would go to our local track and walk for about an hour. Now,I'm lucky if I can walk in my local grocery store and buy some food. I wish I could go outside and play with my kids......I miss that the most.

Due to my whole right leg hurting and my limbs going numb. I am signing off and will post tomorrow.

Hello World!!!

2011-10-19T18:58:00.000-07:00

By writting this blog I hope to raise more awareness for Dysautonomia and if I can help one person who is also dealing with this debilitating illness then I will be happy. If you would like to know a little more about me and what I have been diagnosed with please vist my about me page.

I decided to name my blog and well as my website My INVISIBLE Sickness because many people seem to think a person can not be sick if they don't look sick. Many doctors have NO CLUE what Dsyautonomia even is. The lack of awareness and study in this area really annoys me. Yes, it is rare but so many people struggle with Dsyautonomia that there should be more research being done.

After dealing with the symptoms of POTS and being told lord know how many times that "It's All In Your Head." I was finally diganosed with Postural Orthostatic Tacycardia Syndrome 8months ago. My symptoms have been getting worse and I am happy to say that I will be seeing a specialist in 2 more weeks, Dr.Amer Suleman in Texas. Hopefully I will have some anwsers and will recieve the treatment that I so desperately need. I have not found out my reason for having the illness and I am still looking.

Today has not been a good day at all. On top of my pots symptoms I have been having excrutating pain in my right knee,thigh,and hip. After dealing with the pain for 1 week and 3 days I decided to go see my GP. They took x-rays and he diagnosed me with bursitis(OUCH) thank you for the added diagnoses and pills. I currently take 11 different meds and even though I am worried about my liver, when I take my meds I feel as though I can function at least half way right. With everything else I have I now been diagnosed with Bursitis. I am only 24 and I feel older than my age. I am dealing with illnesses that most people deal with when they are older.

If you have any questions or comments please feel free to contact me.

Also please vist and support my personal website which has more information about Dysautonomia and POTS
http://www.myinvisiblesickness.com/