YOU KNOW YOU HAVEA CHRONIC ILLNESS WHEN....

Let’s face it, most days having a chronic illness is just no fun. However, it can have its humorous moments if we look for them. I found the following 'funnies' and thought I'd share them with you!

You know you have a chronic illness when:

• You bawled when the television show 'ER' went off the air because it was the only TV show where you actually felt like you understood all the technology talk.
• When you hear the term 'Club Med' you automatically think of the hospital.
• When you are in the hospital you keep imagining people being intimate behind closed doors because you’ve watched too many episodes of 'Grey’s Anatomy'.
• You ask your child to open the child-proof bottles of medicine because your hands are too sore.
• Your medical records have to be transported on a cart.
• To entertain people at parties you recite the side effects of medications as if you are the voice-over on a commercial.
• Your favorite Oprah program is when Dr. Oz is on.
• The pharmacist brings your medications to the counter without you having to give him your name.
• To get rid of boredom on road trips, your whole family can go through the alphabet and name a drug that starts with each letter of the alphabet.
• When you’re unable to sleep because of pain, you watch 'The Jerry Springer Show' or a 'The Real Housewives' and feel like you actually have a life.
• Your spelling has improved dramatically, especially on words like 'fibromyalgia' and 'osteoporosis'.
• When anyone around you has an accident you have a complete First Aid kit of bandages, ointments, sanitizers, etc.
• Or you’ve been 'Around the World in Thirty Minutes' with CNN’s Headline News 57 times in one sitting.
• You earn $20 cash back a month from your pharmacy’s bonus points.
• You have a panic attack in public and say, “Praise God this is only the fourth one today!”
• You’re invited to the wedding of the gal who works at the hospital lab.
• Someone says, “You are looking so good!” and it actually makes you feel a bit frustrated, rather than flattered.
• Your child thinks watching you give yourself injections of medication is 'cool'.
• You have a flashback and don’t know what happened and can honestly say, “I don’t know where I was or what I was doing but I’ll make something up if you’d like."
• You carry hand-sanitizer with you everywhere and aren’t afraid to use it.
• You shake hands with your left hand so it throws people off enough that they don’t squeeze your hand.
• You know every scripture about healing and can finish people’s sentences when they try to quote them to you.
• The teen children of your friends call to see if they could interview you for a paper in their health class.
• It’s more fun to find 'cute pajamas' than actual clothes.
• You actually enjoy talking to telemarketers because they can’t really hang up on you and you can use them for a therapy session.
• You leave up 'Get Well' cards on your mantel for months because… you’re still hoping the well wishes come true.

Feel free to add yours below in the comments. I'm sure we'd all love to hear them and giggle along with you! I know I can always use a laugh. :0)

Have a wonderfully blessed day!

{{HUGS}}

Teresa

The above was printed with permission from author,Lisa Copen, Copyright 2009,
National Invisible Chronic Illness Awareness Week

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

DAY of VISIBILITY

Today, June 6th, is the Day of Visibility for those with an Invisible Illness. It is a day to embrace and uplift all people living with an invisible illness and let them know they ARE seen and cared for! The term invisible illness refers to any medical condition that is not outwardly visible to others, sometimes even the most highly trained healthcare professionals. Invisible illnesses encompass a broad range of conditions, including, but not limited to, heart conditions, asthma, diabetes, psychiatric illnesses, autoimmune disorders and even cancer.

For the Day of Visibility I have chosen to re-post the following questionnaire that I did last September for Invisible Illness Awareness Week. I know many of you read it back then but I hope you will take a moment to do so again. Also, if you live with or know someone with an invisible illness, I hope that you will give them a gentle hug or call/email them today to let them know that you DO 'see' them AND their illness and be sure to tell them how much you care. It means more than you can possibly know to hear those words.

30 THINGS ABOUT MY INVISIBLE
ILLNESS YOU MAY NOT KNOW

1. The illness I live with is: Dysautonomia with Reflex Syncope - This means there is a dysfunction of my autonomic nervous system that causes me to pass out very frequently, especially if I stand suddenly or for more than a few minutes, often just seconds.

2. I was diagnosed with it in the year: 2007

3. But I had symptoms since: Adolescence

4. The biggest adjustment I’ve had to make is: that I'm homebound and mostly bedridden. I am no longer able to enjoy most of life's basic activities.

5. Most people assume: that if I'm sitting up, talking, smiling or carrying on a conversation that I'm 'feeling better' physically. Doing any of those things are very hard any time of the day or night for me now. I struggle just to talk sometimes.

6. The hardest part about mornings are: waking up and trying to move. I must take several medications before I can even get out of bed. After that, I must rest for a while and let them take effect before I am able to get up. Then, I must have assistance getting dressed, getting down the stairs and into my recliner where I will stay ALL DAY - if I'm able to get down there at all!

7. My favorite medical TV show is: none really. I don't watch these much anymore. It reminds me too much of things I can't do any longer. I worked in the medical field for nearly 20 years and now, because of my illness, I can't.

8. A gadget I couldn’t live without is: probably my laptop because it is my sole connection to the outside world except through my family. I also must have my wheelchair in order to get around most days.

9. The hardest part about nights are: the excruciating pain I often endure and my constant struggle with insomnia. I am always exhausted even if I sleep a few hours. I NEVER sleep more than 1-2 hours at a time without waking up.

10. Each day I take __ pills & vitamins. Let's just say it's a lot and leave it that!

11. Regarding alternative treatments I: am relying on my team of doctors to advise me best on what to do.

12. If I had to choose between an invisible illness or visible I would choose: to leave it to the Lord. This isn't a choice I would make. They are both equally tough, I suppose.

13. Regarding working and career: I am now completely disabled and have been on Social Security Disability Insurance (SSDI) for about a year and a half. I was approved the very first time I applied, which was a complete God-thing, and I am very, very grateful. However, I truly miss working in the medical field. I did so for almost 20 years and I really miss it a lot!

14. People would be surprised to know: that sitting at home all day, every day is not all it's cracked up to be. 'Bed-rest' is NOT fun after about the first week! I would trade this for just about anything!

15. The hardest thing to accept about my new reality has been: not being able to be out and about, participating in the lives of my family. I really miss seeing all they do and being a part of it.

16. Something I never thought I could do with my illness that I did was: start this blog and make so many internet friends! There are many who have been such a wonderful source of strength, love and encouragement.

17. The commercials about my illness: do not exist because it is so rare. :0(

18. Something I really miss doing since I was diagnosed is: pretty much everything, especially all the things that involve my family. It is not easy being stuck at home all the time.

19. It was really hard to have to give up: control. God has that. Well, at least I keep giving it to Him on a daily basis.

20. A new hobby I have taken up since my diagnosis is: Blogging, Facebook and message boards. I also really enjoy buying and selling on Craig's List with the help of my husband. We have gotten some really good deals.

21. If I could have one day of feeling normal again I would: have just a normal day with my family. I would chose a Friday so I could go to the football game where I would watch my youngest daughter march and I would cheer from the top of the bleachers! After the game, I would go out to dinner with my entire family and then spend the rest of the night out on the town!

22. My illness has taught me: how truly blessed I am! It has taught me to not take anything in life for granted and that my husband really does love me unconditionally.

23. Want to know a secret? One thing people say that really gets under my skin is: 'But you SO good, you must be getting better.' OR 'You are not in the bed, so you must be better.'

24. But I love it when people: ask questions about my illness out of a genuine desire to know more about it and to understand how I truly feel.

25. My favorite motto, scripture, quote that gets me through tough times is: Scripture from Jeremiah 29:11 ¹¹ For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

26. When someone is diagnosed I’d like to tell them: to learn as much about their illness as possible and be their own advocate! I would also tell them they are not alone. Find other people who have the same illness to encourage them. Find support through their local community support groups, internet support groups, message boards, etc. You do not have to go it alone. Above all, trust in the Lord to see you through! People will let you down, but He never fails!

27. Something that has surprised me about living with an illness is: how many people try so hard to determine how I 'caught' this disease and/or how I should 'treat' it or how the doctors should be treating me. I also constantly hear how I should go to another doctor and another until I find someone who can make me well. *sigh*

28. The nicest thing someone did for me when I wasn’t feeling well was: This just can't be limited to just one person or occasion! There have been so many people who have sent notes and/or gifts, called and come to visit me. Others who have made us dinner, brought flowers, cleaned our house and helped in our yard. The stories about these things are endless and I am truly forever grateful!

29. I’m involved with Invisible Illness Week because: I want to bring much more awareness to my particular illness. Plus, I desperately want people to know that just because an illness is not seen, does not mean it does not exist or is not as intrusive as a visible one. There is so much people do not understand about these illnesses and that is why awareness is important.

30. The fact that you read this list makes me feel: honored and very grateful that you cared enough to take the time to do so. I truly appreciate it, more than you'll ever know!

P.S. For those of you who have been praying for my mom, I wanted to let you know she is still in the hospital and is doing fairly well. All the tests they have done so far have ruled out anything related to her GI tract. However, they still have stool cultures pending. They are also doing a whole host of test that have nothing to do with the GI tract. They have already diagnosed her with Pneumonia and are administering breathing treatments every few hours. She is in a good bit of pain which they think is from the Pneumonia. I just spoke with her not too long ago and she sounded pretty good. She was a little loopy from the meds but otherwise she was in good spirits. We really appreciate your kind words of encouragement and all of your prayers and would really appreciate it if you continued to lift her up in prayer. Thanks so very much!

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

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.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

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??

IN SICKNESS AND IN HEALTH Communicating With Your Spouse About Chronic Pain

We naturally share about our aches and pains with our spouse when we are chronically ill and in pain, but how much talk is too much before our spouse grows weary of hearing about a problem he just can't fix?

"I feel like there are thumb tacks in my bed!" I tell my husband as he crawls into the other side of our bed. "I know there is nothing there, but I feel bruised all over."

“I’m sorry,” he offers with a sympathetic voice, but there is little else he can do.

“Actually, I'm really nauseated too,” I add. “It’s probably just the meds. I wonder if I should eat something or if that would make it worse. Hopefully it will pass if I can just go to sleep.” Before I finish my sentence, he is already starting to snore because he's so exhausted. *sigh*

For many of us, our spouse is our best friend. If our relationship is good, we want to share our feelings with them. Even if our relationship is hurting, we feel that by explaining our pain, our spouse may sympathize and be more loving toward us.

Although we don’t want to burden them by constantly sharing about our aches and pains, when we are hurting there is a desire to be heard and have our feelings validated. By talking out loud about what we are feeling, it somehow makes the pain real. It’s no longer “all in our head.”

Galatians 6:2 tells us “Carry each others burdens, and in this way you will fulfill the law of Christ.” At some point we must carry these burdens to the Lord, as well as a close friend, rather than just count on our spouse to carry the burden of listening about every single ache.

Although our spouse may not be suffering from a physical ailment, there are still many losses that he is grieving. For example, it is an emotional thing to watch the person you love be in pain and not be able to 'fix it', especially for men. He may be suffering as he watches you lose the ability to do things you love. He likely misses the couples outings you once took together when you could do physically active events, whether it was date night or just taking long walks together in the evening. He may be frustrated that even his hugs can cause you to wince. Counselors have found that there are three major areas where marriages suffer: money, time and physical intimacy.

Your marriage may be having difficulties in all three, specifically because of the role chronic illness has taken on within your marriage. Is it possible to “share our burdens” with our spouse without overburdening him and making him want to run the other way every time we open our mouth to share another symptom of our ailments?

Be a team with your spouse

It’s you and your spouse “up against” the illness. Although you may feel like your spouse is merely a spectator, intentionally make him a part of your team fighting the battle of pain, in whatever way he is most comfortable.

Ask your spouse if you can share some information about your illness so he has a better idea of what you are going through, but don’t overwhelm him. If he is willing to attend a few doctors appointments with you, let him, and give him time to ask the doctor his own questions. For example, giving him a brochure may be better than handing him a 250-page book. If he listens to podcasts, find some that would be beneficial for him to listen to about your illness. Acknowledge that there may be role or responsibility shifts in the marriage due to the illness. Be open about what you are struggling with and where you need help. For example, if you can no longer scrub the bathroom, let him know well before the grime gets out of hand.

Connie Kennemer lives with Multiple Sclerosis and she candidly shares the struggle that it can be to find the right balance and word. “I am not as mobile as I used to be and I often ask more of my husband such as ‘Can you work at home this afternoon?’ or ‘Why do you have to go to another meeting?’ How much should he accommodate me because my body is changing? He doesn’t always know when to stop and encourage me to try things myself. This is a constant challenge.”

Be reasonable in your expectations

We often marry someone who has our opposite personality style. If you need to read every article about your illness, but your spouse doesn’t, it may simply be because your spouse has a more laissez faire attitude, not because he doesn’t care. His response to a crisis may appear to be nonchalant on the outside, but it doesn’t mean he is not worried and concerned about you.

On the flip side, maybe you are emotionally overwhelmed by the diagnosis and you need to just sit back and take it all in before you start doing research, while your spouse is spending hours at the computer finding out everything he can on the latest treatments, medications and signing you up for the healing service at church. He may accuse you of being in denial about it all, since you aren’t showing as much passion as he in finding out more about your illness. An excellent book recommendation in helping you understand your communication styles better is “Men are Like Waffles, Women are Like Spaghetti” by Bill and Pam Farrell.

Have information about your illness available for when he is ready

If you are having a conversation and you want to explain more about how you are feeling, or details about the illness itself, you may want to have books with sticky notes on the pages you think he’ll find most helpful. Or bookmark pages you can read together and then discuss. Connie says, “After ten years of living with MS, I am past the whiny stage, but Rex sometimes holds back; that’s when I need to ask him more questions about his feelings.”

Creatively keep him informed about the embarrassing parts of the illness

If your illness is going to cause you to be in the bathroom during eighty percent of the events you attend together, you need to let your spouse know that this is part of the disease. Health organizations have brochures on symptoms. You can say, “I’m dealing with some personal matters of this illness right now; I don’t really want to talk about them yet, but they’re in this brochure if you’re wondering.” Avoid sharing every detail if you can.

Look for other ways to vent besides always dumping on your spouse

“I realized that I held onto all of my frustrations of pain during the day and then ‘threw’ them at my husband as he came in the door,” shares Cheryl, who lives with chronic fatigue syndrome. “My actions set the tone for our entire evening and even though I felt better, he felt worse, and it lasted all night. He was beginning to dread coming home at night.”

Cheryl began to put aside the last two hours of her day to spend time writing in her journal, praying and doing something she enjoyed that calmed her. “Writing in my journal gave me the chance to express my frustrations, and then prayer really began to minimize the negativity too. My husband quickly noticed a difference and it’s made our relationship so much stronger.”

Find some ways to get involved in your community or a special hobby

What else do you have going on in your life, other than your illness? It’s easy to be overwhelmed with doctors' appointments and just maintaining our illness, but it can result in a pretty dull life. Even if you have limited energy, do something you’ve always wanted to do that doesn’t have a deadline. Put together memory albums for your grandchildren, clean out just one drawer, find a new craft or hobby, volunteer to be on a prayer chain. Soon you will find that your illness actually is the last thing you want to talk about when you have had much more interesting events in your day.

Conclusion

So, the question is, how much talk is too much? Unfortunately, there is no perfect answer. It is different for each person and each marriage. Learn to look at your situation objectively. Honestly ask yourself, "How often am I bringing up my illness and pain? How do I benefit from talking about it more often than necessary? What am I seeking? Validation? Understanding? Actual physical help?" Ask yourself if talking about your illness could be a way of getting your spouse’s attention, and if this seems to be the only thing he responds to? Regardless of whether it is attention, acknowledgment or understanding, how can you get these needs met by the Lord instead? How is it negatively impacting your life, or those around you, by discussing it all the time?

And then take a moment to really ask yourself “Is there a better, more creative way I can create intimacy with my spouse, other than just complaining about each ache and pain? What activities can I still share that could help us grow closer together?”

And then when you do need to share with your spouse, send up a prayer to the Lord first!

“Heavenly Father, You know I do not want to burden anyone, especially when I know there is really nothing they can do to 'fix' me. I just really need a big hug from You right now! I know that my husband cares about me very much and truly wants to encourage me, even on those days when he doesn’t seem to know how. Please give me the wisdom to know when to ask for help/comfort from him and when I should only come to You to fulfill all of my emotional needs. Amen.”

About the Author, Lisa Copen - You will find more articles and overall support while living with a chronic illness and/or pain, please visit Rest Ministries so you don’t miss any of their great content and to be entered for their monthly giveaway! Lisa Copen is the director of Rest Ministries, author of 'Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend' and founder of National Invisible Chronic Illness Awareness Week.

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