NATIONAL INVISIBLE CHRONIC ILLNESS AWARENESS WEEK

This past week, September 13th -19th, was National Invisible Chronic Illness Awareness Week, sponsored by Rest Ministries. Nearly 1 in 2 people are living with a chronic condition, with about 96% of those people suffering silently with invisible illnesses. Therefore, the purpose of this worldwide effort, held annually in September, is to bring together those who live with invisible chronic illness and the people who love them. Organizations are also encouraged to educate the general public, churches, healthcare professionals and Government officials about the impact of living with a chronic illness that is not visually apparent. There are many ways to get involved in this campaign including blogging for the cause, joining the campaign on Facebook, completing & posting the meme '30 Things You May Not Know About My Invisible Illness, etc.

Since I was not feeling well at all last week and was unable to participate, I decided that I would do a post in honor of it today, just a tad bit late. Since I completed and posted the '30 Things You May Not Know About My Invisible Illness' meme last year and then revised and reposted it in June for the Day of Visibility, I decided to repost another favorite post of mine....


50 WAYS TO ENCOURAGE A CHRONICALLY ILL FRIEND


I recently saw this article on the REST MINISTRIES website. I thought it was really neat and would be very helpful for those who have a close friend or family member who is chronically ill.

Being sick, homebound and bedridden has made me feel increasing isolated and lonely. Most of the time, I just don't feel up to having visitors but yet I still feel lonely. It's kind of hard to explain, but I'm sure there are others out there who are experiencing these same feelings.

Since I became sick, I have slowly lost contact with most of my 'real life' friends. All of my closest friends know how much I dislike talking on the phone. (That has been the case long before I became so sick.) I think that, coupled with the fact that they know how extremely sick I've been, has caused most of them to fade into the background.

Occasionally, I will get an email or my husband will get a phone call from one of our friends saying they really want to come visit and/or help in some way but they just haven't known what to do. When that happens, it is usually difficult to think of something to say or to be open and admit that there IS something we need.

I'm sure we are not alone, so I thought I would share this really great list I found with you. I think it might be helpful for those of you who have a loved one who is ill and you have been searching for some way to show them you care and would like to help.

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Lois Wyse once said, 'A good friend is a connection to life - a tie to the past, a road to the future, the key to sanity in a totally insane world.'

Little ways of reaching out make all of the difference to someone who is hurting, especially when the illness is chronic. It's rarely the "size" of the task, but the simple fact that you made an effort and remembered him or her in your thoughts.

Here are 50 creative ways to encourage a chronically ill friend, excerpted from 'Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend' by Lisa Copen.

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1. Ask, "What events in your life are changing and how are you coping with the changes?"

2. Understand that she lives in a constant state of making decisions for which there is no guarantee that she is making the right choice.

3. Offer to bring meals and put them in disposable containers. Attach a note saying "This doesn't need to be returned."

4. Add stickers to envelopes for a cheerful touch.

5. Arrange for your friend's kids to have a night with your children.

6. Don't make a person into a project.

7. Ask, "Would you be willing to talk to a friend of mine who has recently been diagnosed with a chronic illness and offer her some encouragement?" It makes one feel good to know that her experience can offer someone else hope and that God still has a purpose for her life.

8. Wash his car and put a little note inside for him to find later.

9. Remember important anniversaries, both the good and the bad. No one else will.

10. Ask, "Do you want company the day that you wait for the test results? I could come over for a couple of hours."

11. "No matter how little you have, you can always give some of it away." ~ Catherine Marshall. Just listen . . . until it hurts to not say anything. And then listen some more.

12. Ask her, "How do you feel God is working through-or despite-this illness in your life? I'm interested."

13. Ask, "What do you wish people understood about your illness?"

14. Don't make her feel guilty about things that she cannot do.

15. Treat her to a gift of movie rentals via postal mail through a service ($7-15 a month).

16. Ask, "Would you be comfortable with having your name on a prayer list, so that others can pray for you?" Don't assume.

17. Instead of saying, "I will pray for you," say, "I'd like to pray for you right now, if that's okay."

18. Mop the floors.

19. Ask if she would be interested in writing something for the church newsletter, maybe even about the subject of living with chronic illness.

20. Buy a brightly colored umbrella as a gift.

21. Ask, "Do you have an errand I can run for you before coming over?"

22. Ask her to do spontaneous things, like go to a concert in the park, or just for a picnic. She may be more likely to participate since she knows if it's a good day or a bad day. Don't be upset if she has to say no.

23. Don't say, "So, why aren't you healed yet?" or "I wonder what God is trying to teach you that you just aren't learning!"

24. For a unique gift, provide brightly colored paper plates, napkins, and utensils in a gift bag with a note that says "For when you don't feel like doing dishes."

25. Get her a pretty box to keep all of her notes of encouragement. Remind her to get it out and read things when she is feeling down.

26. Be her advocate. If you are at an event and walking/seating is an issue because of her disability, ask her if she'd like you to take care of it. If she says you can, be firm but not rude. Don't embarrass her by making accusations of discrimination or by making a scene.

27. Ask, "Would you be interested in a prayer partner from our church?"

28. Purchase matching coffee mugs for you and your friend, and then commit to pray for one another each morning while using them.

29. Say, "While you're in the hospital I'd be happy to take care of your pet."

30. Don't tell her about your brother's niece's cousin's best friend who tried a cure for the same illness and. . . (you know the rest).

31. Find out which charity is most important to her and then give a donation in her honor.

32. Ask, "What are your top three indulgences?" and then spoil her soon.

33. Hold the door open for her. They are heavy!

34. Don't tease her and call her "hop along" or "slowpoke." Comments you mean in fun can cut to the quick and destroy her spirit. Proverbs 18:14 says, "A man's spirit sustains him in sickness, but a crushed spirit who can bear?"

35. Say, "I know you must need someone to just vent to occasionally. I may not fully understand how you feel, but I'm here to listen anytime."

36. Ask your church youth group to come over and clean up the yard during seasonal changes.

37. Don't ask her, "How are you able to make it financially?" If she wants to share a burden she will.

38. Ask, "What would you advise me to look for in a new doctor?"

39. If your friend has a disabled parking placard and you are driving, allow her to tell you where she wants to park. If she's feeling particularly good that day, she may not want to park in the "blue space." Don't be disappointed that you'll have to walk farther.

40. Don't gossip about others. She'll wonder what you say about her. "Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen." (Ephesians 4:29)

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Proverbs 25:11 says, "A word aptly spoken is like apples of gold in settings of silver." Be kind, gentle, and respectful.

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41. Accept that her chronic illness may not ever go away. If she's accepting it, don't tell her the illness is winning and she's giving in to it.

42. Don't say, "Let me know if there is anything I can do." People rarely feel comfortable saying, "Yes, my laundry." Instead pick something you are willing to do and then ask her permission. Try the coupon in back!

43. Ask her to share her testimony at an event.

44. Buy a magazine subscription for her on her favorite topic.

45. Plant a rosebush to view from a window.

46. Understand that you don't need to know all of the details about the illness in order to be helpful. He'll share with you what he's comfortable with you knowing.

47. Don't ask, "Why can't the doctors help you?" or insinuate that it must be in her head. There are millions of people who are in pain with illnesses that do not have cures.

48. Avoid having gifts be "pity gifts." Just say, "I saw these flowers and their cheerfulness reminded me of you."

49. Send tapes of church services your friend misses to her with a copy of the bulletin and a note.

50. If she doesn't have a cordless phone, get her one. Phone headsets are also nice.

That's 50! Do you have any special ways you have reached out to someone special in your life who has been in need due to a long-term illness or injury?

To learn more about National Invisible Illness Awareness Week, click HERE. Thanks so much for stopping by! I hope you have an amazing week!

POST-IT NOTE TUESDAY

Welcome back to Post-It Note Tuesday. As of today, Only Parent Chronicles has taken over the reigns of PINT. Everything will remain the same, except who is hosting it. We would LOVE for you to join us, so please head on over and link up. It is really lots of fun!


















































Thanks for stopping by. I've been trying my best to post as often as I can, but I am truly not doing well. I don't think things have ever been this bad with my illness, except when I've had an infection in my port. However, this seems totally different from that. I have an appointment with my doctor on Thursday to see if we can get to the bottom of what is going on. The pain I've been experiencing is almost intolerable at times and I've very rarely been able to get out of bed over the last month. I hope you will continue to keep me in your prayers. I cherish every single one of them.

I hope each of you are having a fabulous week.

WHO AM I??

For it is by grace you have been saved, through faith - and this not from yourselves, it is the gift of God - not by works, so that no one can boast.

~ Ephesians 2:8-9

Hi Everyone,

I'm sorry I haven't been around as much lately but I'm most definitely still alive! Not only has our internet being acting up, but the last few weeks, especially this last one, have been particularly hard for me. I have been dealing with extreme pain, nausea and dizziness. It has been so bad, that most of the time it has been next to impossible just to sit up.

Most days, I'm able to get out of the bed, get dressed and make it downstairs to our family room. There, I usually remain in my recliner for the rest of the day. It definitely takes a good bit of work and assistance to get there, but I manage. This week I have not been able to do that at all. I have had to stay in bed the entire week. Needless to say, it has been very discouraging for me AND for my family. It is especially difficult because all our bedrooms are upstairs and, of course, most of the action goes on downstairs. Plus, in order to help me, they must go up and down the steps multiple times each day. I really feel guilty about that, even though I know I can not help it. It makes me feel like such a burden...and all I can do for them is say thank you. Over and Over and Over. *sigh*

Speaking of thank yous - I would like to say thank you SO VERY MUCH for all the wonderful comments and emails I've received this week. (I'm still trying to catch up on all of them and it's gonna take a while!) I also wanted to say hello to all my new Readers/Followers. It is a real pleasure to meet you and I'm thrilled you chose to stop by and hang out with us! I hope you will come back again soon. When this 'flare' eases a bit, I will be making my rounds to all your great blogs. I promise!!

And to my faithful readers who continue to comment, leave sweet words of encouragement and/or pray for me each day, I want you to know that you are such a huge blessing in my life and I cherish you all so very much! Thanks for continuing to visit!

Have a wonderfully blessed weekend!

Blessings,

Teresa

For more inspiring and uplifting music, please visit Amy at SIGNS, MIRACLES AND WONDERS!

STARLIGHT, STARBRIGHT

As some of you may remember, my youngest daughter, Bekah, was diagnosed with Dysautonomia (the same illness I have) last year. Most days, Bekah functions fairly normal for the most part. However, she does have many days when she can't do much more than attend school, come home and go to bed. There are even the occasional days when she can't even do that. She can only stay in bed and rest/sleep because of the tachycardia (high pulse rate), fatigue and nausea that she suffers from. For a 15 year old, having a chronic illness definitely puts a kink in your social life.

A few months ago, I found a very interesting link when I was visiting the site, ButYouDontLookSick.com. The link was to a social networking site for young people ages 13-20. It is called Starbright World. I went to check it out and was really impressed. I even thought it was something my daughter might be interested in.

Here is a little info from their homepage:

'Starbright World is a virtual hangout where you can build on existing friendships or create new ones, from home or from the hospital. Starbright World is an online social network where teens (ages 13 to 20) who have serious medical conditions, and siblings of seriously ill teens, can connect with each other via moderated chat rooms, games, bulletin boards, videos, and more.'

And they have a list of 'some of the illnesses and conditions that qualify for SBW membership':

A – autoimmune disorders, AIDS/HIV, anemia, severe asthma, arthritis
B – burn injuries, brain tumor, blood condition
C – cancer, Crohn’s disease, ulcerative colitis, cystic fibrosis, cerebral palsy, cardiac (heart) problems
D – diabetes (type 1 and 2)
E – endocrine problems, epilepsy
H – Huntington’s disease, HIV/AIDS, hydrocephalus, hypophosphatasia
I – infectious disease, inflammatory bowel disease (IBD)
K – kidney disease
L – leukemia, lupus, liver disease, lymphoma
M – migraine headaches, muscular dystrophy, mitochondrial disease
N – neurological disorder
O – obesity/overweight, osteosarcoma, osteomyelitis
R – respiratory problems, rheumatic disease
S – sickle cell anemia, seizure disorder, spina bifida/myelodysplasia, spinal cord injury, stomach or digestive problems
T – transplants, tumor or mass
U – ulcerative colitis

Since I found the site, Rebekah has become a very involved member. She has been spending A LOT of time there and has made a lot of really close friends that she chats with online quite often. As her mom, I really like the site. It is heavily monitored by adult 'hosts', so no foul language or inappropriate behavior is allowed and any suspicious activity is handled immediately. Therefore, the possibility for adults to be there preying on our children is almost non-existent. Also, for a child to sign up, they must first have parental consent.

So, if you know of a young person who has a chronic illness and think they would like to get to know other kids going through something similar, let them know about Starbright World.

No matter who you are or what you're going through, it helps to know you aren't alone.

{{HUGS}}

Teresa

DYSAUTONOMIA: The Story of My Illness - Revised

(I am having a really difficult time right now, so I picked this post that I wrote back in July of 2009 to revise and update for everyone to read again. I'm hoping it will help my newer readers understand my illness a little better and, hopefully, refresh the minds of those who have been following me since the beginning.)

I thought I'd take the time to write a post to try and explain exactly what my illness is and hopefully do it in a manner in which you can understand it better.

In 2007, I was diagnosed with a very rare neurovascular disease that has greatly affected my life and the lives of my family. It is so very rare that most physicians have never even heard of it. However, I was very blessed to be referred to an amazing cardiologist who was very familiar with the disease and recognized the symptoms right away! That is almost never heard of.

The disease I have is called Dysautonomia, or sometimes Postural Orthostatic Tachycardia Syndrome (POTS), with Reflex Syncope. It is a disease of the autonomic nervous system. In my case, it causes very frequent syncopal episodes (fainting/unconsciousness). I have had HUNDREDS of syncopal episodes since becoming sick in 2007.

In case you are not familiar, the autonomic nervous system controls the bodily functions you are not consciously aware of like your blood pressure, pulse, respiration, temperature regulation, perspiration, salivation, urinary and gastrointestinal function, etc. Since my autonomic nervous system is not working properly, it results in a reduction in the ability of my heart and circulatory system to compensate for the changes in posture which causes extreme dizziness and often syncope (fainting) when I stand, especially if I stand suddenly or for more than a few minutes, often just seconds.

When you stand, your body should adjust to the affects of gravity on your body and compensate for that. For some reason, mine does not compensate well. When you stand, the vessels in your legs and abdomen should constrict so that blood and oxygen gets to your heart and brain adequately. For me, when I stand, the vessels, particularly veins, become unnaturally dilated, causing blood to pool (get caught) in my legs and abdomen. Therefore, my heart beats way too fast in an effort to make up for the reduced blood volume transferred by each beat. This quickly results in my blood pressure dropping incredibly low and at that point I usually pass out due to the lack of oxygen to my brain.

Once I am lying on the ground, I eventually regain consciousness when the oxygen becomes adequate again. This can be anywhere from a couple of seconds to 10-15 minutes. Often while I am still unconscious, I will have seizure-like activity such as jerking of my extremities, loud snoring, drooling, sweating and sometimes incontinence. A couple of years ago, I had several tests and was told that it was not epileptic-type seizures and that they did not know what it was. However, later I was told that it is a response due to lack of oxygen to the brain. This is thought to be Reflex Anoxic Seizures or, in other words, seizures caused by lack of oxygen to the brain.

There are TONS of other symptoms that go along with this disease but the situation above is the most major one for me. Some others include :

* Syncope (fainting) or near-syncope
* Falls
* Hypovolemia (dehydration/low blood volume)
* Tachycardia (elevated heart rate)
* Hypotension (Low blood pressure)
* Pain
* Extreme fatigue and weakness
* Delayed gastric emptying
* Nausea/Vomiting
* Diarrhea/Constipation
* Chest pain and palpitations
* Dizziness, lightheadedness, vertigo, disequilibrium
* Migraines
* Loss of temperature regulation - intolerance to heat/cold
* Sleep disorders
* Small Fiber Neuropathy
* Cognitive impairment/brain fog/memory loss
* Fever/Chills/Flushing
* Noise/light sensitivity
* Visual disturbances
* Tremors

It is thought that I have probably had this since childhood but it became active in 2007 after I had myriad medical issues in late 2006 and early 2007. In September 2006, I had multiple treatments for a failed root canal. None of them worked so I ended up having the molar extracted the week before Christmas. The extraction not only dry-socketed but opened a hole into my sinus cavity. This needed to be repaired surgically but it was during Christmas and everyone was on vacation, plus I was scheduled for abdominal surgery in January. In January, I had surgery for endometriosis, bladder sling placement and hernia repair. After recuperating from that, the surgery to repair the hole in my sinus was scheduled for March. I had that surgery and everything went well until I developed Pericarditis (inflammation in the sac that surrounds the heart caused by an infection) in July. From that point on things began to go downhill very quickly. I began to experience all kinds of symptoms as listed above. That is when I was sent to my cardiologist, Dr. Olubi. After the first couple of visits, she started to suspect POTS. She then scheduled me for a Tilt Table Test and the diagnosis was confirmed a few weeks later.

There is no known cure for my illness, all they can do at this time is treat the symptoms. I am currently going back and forth to Vanderbilt University Medical Center for treatment. They are the leading research facility in the world for this disease. I have been three times so far and I am really pleased with the staff there, especially my doctor. However, even with treatment, I am basically home-bound and bed/recliner-ridden as I can't walk very far without the fear of passing out and injuring myself.

In September of 2008, I had a port placed in my chest in order to receive IV fluids on a regular basis. This helps to keep my blood pressure at a more suitable level. The port was truly an answer to prayer because I have really poor veins. However, since having that initial port placed, I have had several severe bacterial infections that either originated in the port or ended up there. Each time, I have developed acute sepsis and spent at least 7-10 days in the hospital. On 2 occasions I have had to have the port removed and be completely free of any infection before they could place a new port. I have written more about this in these posts:

SICK AND TIRED OF BEING SICK AND TIRED

MY MOST RECENT HOSPITAL STAY

ENDURING SEPSIS with Dysautonomia Part 1 of 2

ENDURING SEPSIS with Dysautonomia Part 2 of 2

I know this is a lot of information and a lot to digest. I am still learning about it and so are the doctors! I do not mind talking about it, so if you have any questions, please feel free to ask me. My family and I would also really appreciate your prayers. Even though there is no known cure at this time, we know our God is a BIG, BIG God and that through Him, all things are possible!

Philippians 4:13

Thanks for stopping by. I'd love to know you've been here so please leave a comment and let me know! See ya soon!

Blessings,

Teresa

P.S. For more interesting posts about my illness, my MUST READS are a great source of information!

WORD-FILLED WEDNESDAY

Welcome to Word-Filled Wednesday! As always, the purpose of WFW is to share God's Word (no famous quotes or other literature, only the beautiful Word of our Heavenly Father) through scripture and pictures. The host for this week is Christy at Critty Joy. Please take a few minutes to visit her and be encouraged!

source

'Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus.'

~ 1 Thessalonians 5: 16-18 ~

The commands in this verse I strive very much to follow. However, I must admit, living with a chronic illness like Dysautonomia often makes it extremely difficult to feel joyful. :0( It makes a lot of things difficult. It makes it difficult to remember to pray as much as I should - or would like to. It makes it difficult to see the blessings the Lord has given to me because of the pain and sickness I am continually dealing with. This makes it more difficult to properly express my thankfulness.

I want to do all these things, I really do! But lately I just haven't felt up to it, not even a little bit! Like a stubborn little toddler, my body has absolutely refused to cooperate. The pain is relentless except for a short window of time after I take my medication, but that only lasts for a little while. Like literal fog on a dark night, the 'brain fog' I experience makes me unable to concentrate and my memory extremely poor. Nausea is my constant companion and frequent vomiting wreaks havoc on my already aching body. Sleep, like time, has become more and more elusive. I want, I NEED, to sleep so badly, but I can't. I very rarely sleep more than an hour or so at a time. That in and of itself has really worn me down, mentally and physically. When you are exhausted everything is made worse.

Needless to say, it is very hard to feel joyful with so many un-joyful things happening. However, I keep reminding myself that THIS TOO SHALL PASS!! I know that one day I WILL BE healed - if not on this earth, then when I get to my Heavenly home! I will be given a brand new body. One that is completely healthy and completely pain-free. One that can walk and run and dance and play!

Until that wonderful day, I will CHOOSE to be joyful, I will CHOOSE to keep praying and I will CHOOSE to give thanks to my amazing God for all that He is doing in my life because I know that He has plans for me! He has plans to make me prosper and not to harm me, plans to give me hope and a future! Amen!

source

Thanks again for stopping by. I hope you all have a truly wonderful week.

Blessings,

Teresa

DYSAUTONOMIA: MY FREQUENTLY ASKED QUESTIONS PART 4

Please note: If you have not read PART 1, 2 and 3 in this series, please click on the following links to do so before reading this post.

PART 1 Questions 1-4

PART 2 Questions 5-8

PART 3 Questions 9-12

13) WHO ARE YOUR POTS DOCTORS AND/OR WHAT DOCTORS/SPECIALISTS DO YOU RECOMMEND?

My original cardiologist who suspected that I had POTS was Dr. Olubunkola M. Olubi (Dr. Olubi) at Cardiac Disease Specialists (Newnan, GA Office). Dr. Dan Dan (yes, his name is Dan Dan!) who also works for Cardiac Disease Specialists (Piedmont Hospital - Atlanta Office) is the physician who confirmed my diagnosis with the Tilt Table Test (TTT).

It wasn't long after the TTT that I was referred to the VANDERBILT AUTONOMIC DYSFUCTION CENTER at Vanderbilt University Medical Center in Nashville, Tennessee. There I was evaluated and treated by Dr. Satish Raj. I HIGHLY recommend Dr. Raj and his staff at Vanderbilt. I could not be more pleased with that facility! My husband and I have been treated with the utmost dignity and respect every time we have been there. Everyone we have come into contact with has been very, very kind and compassionate. They have listened to everything we have had to say and they have done their absolute best to answer all of our many, many questions. Since my initial evaluation, I have been back twice and have been in frequent contact with Dr. Raj via email. I was scheduled for another follow-up with Dr. Raj not too long ago, but I have not been well enough to travel. I hope to be able to go again soon.

The doctor who truly keeps everything going for me is my Primary Care Physician (PCP), Dr. Patrick Railey. He is an amazing family practice doc I used to work with, go to church with and do medical missions with before I became so sick. Like most physicians, he was not extremely knowledgeable about Dysautonomia before my diagnosis. However, he has really went out of his way to learn as much as he can about it so that he can help me as much as he can in his capacity as my PCP. He has been a huge advocate for me and a true blessing to my family and me during this crazy time in our life.

I do not have any personal knowledge about any other doctors; however, you will find a great PHYSICIANS' LIST at the Dysautonomia Information Network (DINET) website.

14) DO YOU HAVE ADDITIONAL RESOURCES YOU CAN PROVIDE?

Absolutely!! I have provided a few on the right side-bar of my blog but I have been working on a much more comprehensive list for you!

WEBSITES:

BUT YOU DON'T LOOK SICK
CRANBERRY TEA TIME
DYNA KIDS
DYSAUTONOMIA - Symptoms, Causes and Treatment
DINET - Dysautonomia Information Network
MEDHELP - Autonomic Dysfunction Community
NDRF - National Dysautonomia Research Foundation
PHYSICIAN LIST
SEPSIS INFO
SSDI INFO - BYDLS.COM
SSDI - DISABILITY KEY
STARBRIGHT WORLD - Social Network for Teens
STARS - Syncope Trust And Reflex Anoxic Seizures
12 MORE PAGES
TILT TABLE TEST (TTT)
VANDERBILT - Autonomic Dysfunction Center

BLOGS:

12 MORE PAGES
CHRONIC BABE
DARE: Dysautonomia Awareness Rarely Experienced
DISABILITY KEY - SSDI
Dysautonomia: My Journey, My Battle, My Victory, My Life
INSIDE MY HEAD
JONI AND FRIENDS
LIVING TIRED: My Journey with POTS
LIVING WITH BOB
MELANIE'S JOURNEY
ONE DAY AT A TIME
POTS and DYSAUTONOMIA AWARENESS
SURE HOPE
WHERE DID I GET THIS LEMON?

ARTICLES:

AHA - POTS
POTS

BOOKS:

'God Needs Me: Living with Dysautonomia' by Lynn Fox Adams - May be purchased at Tate Publishing or Amazon.

VIDEOS:

Mystery Diagnosis Episode About POTS (Orthostatic Intolerance) - Part I
Mystery Diagnosis Episode About POTS - Part II
Mystery Diagnosis Episode About POTS - Part III
YouTube - 5 Awesome Potsies!
YouTube - Chronically Kylie's Channel

FACEBOOK SUPPORT GROUPS:

DFO
DYNA Frogs
DYSAUTONOMIA AWARENESS
DYSAUTONOMIA BOOK, 'God Needs Me. Living with Dysautonomia.'
DYSAUTONOMIA FOUNDATION
Fans of BUT YOU DON'T LOOKS SICK
FIGHT AGAINST POTS
Got POTS? We do.
I HAVE DYSAUTONOMIA. IT DOES NOT HAVE ME!
Living with Postural Orthostatic Tachycardia Syndrome Group
POTS
POTS and Dysautonomia Awareness
STARS - Syncope Trust And Reflex anoxic Seizures
The Dysautonomia Connection
12 MORE PAGES
UII - Understanding Invisible Illness

This completes my FAQ series. I know for some it has probably been a bit boring. However, I can only hope and pray that there have been at least a few who have found it beneficial because they have been searching for answers related to their own battle with this illness or for those not yet diagnosed. I also hope it has helped answer some questions for some of those who know me but haven't quite understood what has been going on in my life.

Either way, thanks for taking the time to read these posts. As I said at the beginning of the series, in the next few days, I will create a separate page just for these questions. Then I will put a link to it at the top of this page for quick reference.

Thanks again for all the love and support you all continue to show to my family and me. It means more to us than you'll ever know!!

{{HUGS}}

Teresa

P.S. If anyone would like their name, blog or website added (or removed) to my resource list, please let me know.

DYSAUTONOMIA: MY FREQUENTLY ASKED QUESTIONS PART 3

Please note: If you have not read PART 1 and 2 in this series, please click on the following links to do so before reading this post. It will make a lot more sense that way! :0)

PART 1 Questions 1-4

PART 2 Questions 5-8

9) WHY ARE YOU NOT ABLE TO GET OUT MUCH EXCEPT FOR YOUR DOCTORS' APPOINTMENTS, HOSPITALIZATIONS, ETC?

This illness has left me basically bedridden. I must have help doing almost everything, from getting bathed and dressed to having someone prepare my food and help me back and forth to the bathroom. Every time I am up on my feet, there is a very likely risk that I will pass out, fall and injure myself. I have a wheelchair but just sitting upright in it for more than a few minutes makes my blood pressure drop and my heart race. This makes me extremely nauseated and often I start vomiting. The same is true for riding in an automobile. All of this not only makes me feel miserable but it is very embarrassing, too. Therefore, I stay home where I can be in a safe, controlled environment and feel a little better, too.

10) WHAT ARE SOME OF YOUR INTERESTS? HOW DO YOU OCCUPY YOUR TIME?

I truly enjoy my quiet moments with the Lord, in His Word. When I am able, I love spending time with my family, reading, blogging, listening to music on my iPod, watching TV and occasionally attending my 2 youngest daughters’ high school band activities (Unfortunately, I haven’t been able to do this in quite some time.) Some of my other interests include Interior Design/Decorating, Buying/Selling on Craig’s List, Public Safety-EMS, Child Safety, Dysautonomia Awareness, Being Frugal/Thrifty, Living Debt Free (I♥ Dave Ramsey!), Teaching Others How to Become Debt Free and Participating in Message Boards about any of the above! I have just started dabbling a little in learning about photography. I collect teapots, nutcrackers, beautiful stationary and books.

11) IS THERE A CURE FOR DYSAUTONOMIA/POTS?

There is no known cure for my illness at this time. Right now, all they can do is treat the symptoms. However, I serve a MIGHTY GOD and I know that through Him, ALL things are possible!

12) HAVE YOU APPLIED/BEEN APPROVED FOR SOCIAL SECURITY DISABILITY INSURANCE (SSDI)? IF SO, HOW LONG DID IT TAKE?

Yes, I was approved for SSDI on the very first attempt! I did my initial application over the phone in December 2008 and I was very pleased with the representative who took my information. She was very kind to me and seemed very empathetic. She even stated at the end of the interview that she would request that my case be expedited. She explained that she wasn’t in a position to actually approve it to be expedited but she could recommend it. A couple weeks later, my husband and I had to fill out a few other forms and I had to have my eyes examined at the Health Department.

Very long story short, I was approved for SSDI in February 2009. I firmly believe I was successful because I was completely prepared, as were my doctors. I am very thankful for their help, but I am especially thankful for the help and advice of one very special lady. Her name is Carolyn Magura. I was very blessed to find her on the SSDI message boards at ButYouDontLookSick.com. She gives EXCELLENT advice there and on her own website DisabilityKey and her blog Disability Key Blog. I very highly recommend you check out those sites if you are preparing to file for SSDI or if you have already been turned down. I truly believe they played a HUGE role in my being prepared which led to me being approved so very quickly!

God is SOOO good! Have a wonderfully blessed weekend everyone. Be sure to check back for the 4th part, hopefully on Monday.

{{HUGS}}

Teresa

DYSAUTONOMIA: MY FREQUENTLY ASKED QUESTIONS PART 2

Please note: If you have not read PART 1 in this series, please click on the following link to do so before reading this post. It will make a lot more sense that way! :0)

PART 1 Questions 1-4

5) WHAT EXACTLY IS THE AUTONOMIC NERVOUS SYSTEM?
The Autonomic Nervous System (ANS) is the part of the central nervous system (CNS) that regulates the bodily functions that occur without conscious effort. For example: respiration, pupil size, heart rate, blood pressure, temperature regulation, digestion, salivation, blinking, etc.

6) WHAT ARE SOME OF YOUR SYMPTOMS?

There are so many different symptoms of Dysautonomia and, often, they are mistaken for other illnesses. Here are some of my symptoms:

* Syncope (fainting) or near-syncope
* Falls
* Hypovolemia (dehydration/low blood volume)
* Tachycardia (elevated heart rate)
* Hypotension (Low blood pressure)
* Pain
* Extreme fatigue and weakness
* Delayed gastric emptying
* Nausea/Vomiting
* Diarrhea/Constipation
* Chest pain and palpitations
* Dizziness, lightheadedness, vertigo, disequilibrium
* Migraines
* Loss of temperature regulation - intolerance to heat/cold
* Sleep disorders
* Small Fiber Neuropathy
* Cognitive impairment/brain fog/memory loss
* Fever/Chills/Flushing
* Noise/light sensitivity
* Visual disturbance
* Tremors

7) WHEN DID YOU FIRST BECOME ILL AND HOW LONG DID IT TAKE FOR YOU TO BE DIAGNOSED?

It is thought that I have probably had this illness since childhood but it became active in 2007 after I had a host of medical issues in late 2006 - early 2007. In September 2006, I had multiple treatments for a failed root canal. None of them worked so I ended up having the molar extracted the week before Christmas. The extraction not only dry-socketed but also opened a hole into my sinus cavity. This needed to be repaired surgically but it was Christmastime. All the dental staff was on vacation, plus I was scheduled for abdominal surgery in January, so I had to wait. In January, I had surgery for endometriosis, a bladder sling placement and an umbilical hernia repair. After my abdominal surgery and subsequent recuperation, the surgery to repair the hole in my sinus was scheduled for March. I had the sinus repair surgery. Everything was going well until I developed Pericarditis (inflammation caused by an infection in the sac that surrounds the heart) in July. From that point on, things began to go downhill quickly. I began to experience all kinds of symptoms as listed above. That is when I was sent to my cardiologist, Dr. Olubi. After the first couple of visits, she started to suspect POTS. She then scheduled me for a Tilt Table Test and the diagnosis was confirmed a few weeks later. I was very blessed to have found a wonderful doctor quickly after my symptoms presented!

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8) WHAT KIND OF TREATMENTS HAVE YOU TRIED AND HAVE THEY WORKED?

Lifestyle Changes - I have made some very necessary lifestyle changes - increasing fluid and salt intake, eating smaller, more frequent meals and keeping snacks handy in case my blood sugar drops. I also must limit exposure to loud noise, bright lights and temperature fluctuations.

Compression Hose - I tried wearing the waist-high compression hose (30-40 mmHg), however, that was not very successful due to the extreme difficulty in getting them on and off. Plus, you are only supposed to wear them when you are up walking around and I am not able to do that much.

Medication - I have tried all kinds of medications, none of which have worked at all for me OR I have had some kind of bad reaction to it. (Atenolol, Propanolol, Midodrine, Florinef, and Wellbutrin to name a few.)

IV Hydration - IV fluids have been the most beneficial treatment for me out of everything. The fluid helps keep my blood volume up and that helps keep my blood pressure up. I usually take a liter of fluid a few times a week -- depending on how I'm feeling. However, due to the length of time I've had to have IV access, I ultimately had to have a port -a-cath placed in my chest about a year and half ago. Since that time, I have had several very serious bacterial infections that have either started, or eventually ended up, in my port. Each time this happens, it is an extremely dangerous situation and I spend an average of a week to 10 days in the hospital. I've now had a total of 3 different ports due to the infections. This treatment option must not be considered lightly.

Thanks for stopping by again. I hope you will check back for Part 3!

Blessings,

Teresa