Archive for the Week 08: Friendships Category

Sleep, Friendships, Social Gatherings And A.S. By Meloni

Posted in The Blogs By Meloni, Week 07: Sleep, Week 08: Friendships, Week 09: Social Outings on September 5, 2011 by Cookie Has A.S.

So, I’m literally cheating right now.

I’m part of an ankylosing spondylitis blog group

and I’m several blogs behind

and yep-I’m combining them to catch up!

Because I literally been in a BLOG FOG!

So the first item is sleep-which I now think should’ve been a 4-letter word! Those of us who are in pain 24-7 don’t really “sleep”. Have you ever woke from your sound sleep because you’re hurting? Maybe you moved and something all the sudden felt like a KNIFE stabbed you? Well, I have and do all the time. My eye even hurts and wakes me up. MY EYE THAT’S CLOSED! So, sleep is not something we “really” do. We try and rest every now and then, and even that’s hard! OK-so what happens when we need some sleep or have a lack of sleep? We get ill! Not sick ill, but cranky! Hence the reason we’re sometimes a bit short and snappy. But, folks don’t realize that. They just think we’re rude or something. You try going without sleep for days, weeks, months, YEARS!

Friendships–sometimes it’s just best to not have them. They don’t really understand. So, my “close” friends are few. I have those few (very few) that I can call on the way home from the doctor and cry or share how I’m feeling and they listen. They do try to understand, but I know you can’t understand “things” that you haven’t gone through yourself. I am thankful for those “few” that I have and love them dearly! DW and T–I love ya’ll sooo! As for “couple friends”–you know the married couples that you and your spouse do “stuff” with. Hmm…we have a few of those, I wouldn’t say close though—but my outings are few.

Which leads right to, social outings! We LOVE doing things and going out. But, my time is short. I can’t do what I could before AS. I’m finding “outings” have to now be timed around my infusion. Like the week or two after that I can actually function–not a normal functioning–but function. Because if something comes up when I’m in week 4…forget it! All I’m thinking about is how much I need that infusion and could it hurry and get here. So, for the most part, my outings will be focused on what my kids are doing. I have to pick and chose what I do and know that some of the things I do chose are going to put me down for a day! Oh, and that’s not sleeping, it’s a day of rest. I call them time-outs!

So, here’s the deal with sleep, friendships and social outings–are you going to be all upset when I cancel because of how bad I’m doing at that hour before something is planned? Then it’s not worth you being my friend, because it’s going to happen. Just recently my sister wanted to take me to lunch for my birthday–I called her 30 min before we were supposed to meet to let her know, I’m not feeling good and can we do it another day?….she understands-would you? Most don’t understand. They all the sudden get the “oh, she always cancels attitude” and then they stop inviting. We’ll that’s not what a “true” friend does. A “true” friend tries to gather all the knowledge they can on ankylosing spondylitis so they can understand a little of what I go through.

Do you know someone with a chronic disease? What have you done for them? Do you even try? Have you ever said- hey “you’re feeling bad today?, we’ll how about I bring over some dinner”. Maybe clean their house. Or pick up their children? Send a card letting them know you’re thinking of them. Or simply, I’ll be praying for you and I’m sorry. Most acquaintances simply stop “acquainting”. They can’t understand nor do they want to try, so it’s just best to not be “friends”.

I’ve learned a LOT about how I should’ve acted all through my life–because I’ve always known people with chronic illnesses. We are all just so busy with our own lives, it’s hard to really stop and all the sudden walk very slowly beside someone with a “disease”. There are only a few people who will slow down for a disease ridden friend. If you’ve read this far, maybe you are that person–I’m not saying come clean my house or bring me some food–hahaha But, you know others–people who are in need. Can you help them today? Is there one little thing that you could slow down and do for them today?

AS has my body, but NOT me!


Friendships By Dana

Posted in The Blogs By Dana, Week 08: Friendships on August 29, 2011 by Cookie Has A.S.

For this MOWer’s blog carnival, the topic is friendship. I have had a lot of time to think about friends and friendship since I’m behind in writing my blog posts for this particular blog carnival. Thank goodness this group isn’t strict on due dates! I would be in trouble if that were the case because I have so much that I would like to share with this group, and I am grateful for these special friends that I have made online for adding my posts after the fact~after doing all that work. One particular friend, Cookie, finds the time to add my posts, corrects my grammar, and carefully reads and re-reads each of my posts over and over again to make sure it looks the way that I wrote it on my blog. She has even typed it out one word at a time if it didn’t look JUST the way it looked on my own blog site. She is an amazing woman and friend. I’m so glad I met her. I look forward to “hearing” from her online daily, and worry when I don’t. She does the same. That is a true friend! Thanks again, Cookie, for being such a great, dear friend to me. ;D

According to Wikipedia,
Friendship is defined as…

…a form of an
interpersonal relationship generally considered to be closer than association,
although there is a range of degrees of intimacy in both friendships and
associations. Friendship and association are often thought of as spanning across
the same continuum. The study of friendship is included in the fields of
sociology, social psychology, anthropology, philosophy, and zoology. Various
academic theories of friendship have been proposed, among which are social
exchange theory, equity theory, relational dialectics, and attachment styles.
Value that is found in friendships is often the result of a friend demonstrating
the following on a consistent basis:

  • The tendency to desire what is best for the other
  • Sympathy and empathy
  • Honesty, perhaps in situations where it may be difficult for others to speak
    the truth, especially in terms of pointing out the perceived faults of one’s
  • Mutual understanding and compassion; ability to go to each other for
    emotional support
  • Enjoyment of each other’s company
  • Trust in one another
  • Positive reciprocity — a relationship is based on equal give and take
    between the two parties.
  • The ability to be oneself, express one’s feelings and make mistakes without
    fear of judgement.
  • It is very important to have honesty, trust, sympathy, respect and
    helpfulness in friendship.

All those fantastic fields that I mentioned above are studying and researching the impact of friendships’ influence on our well-being and happiness. We cannot deny that having strong social supports helps us, especially women, feel better. People live longer, healthier lives when they have friends, especially strong, bonding friendships. No one knows if friendships actually lead to better health, if there truly is a correlation, a cause-and-effect relationship. There have been plenty of  theories though. One theory is that if you have a good friend that leads a healthy lifestyle, he/she will then encourage you to also lead a healthy lifestyle as well. Another theory is that good friends better enhance your coping skills to deal with illness and health problems. Still another theory is that good friends encourage you to seek out help and to access health care and other health services. And the final theory is that there are actually physiological pathways protective of health that good friends affect. Friendship is believed to protect both physical and mental health. Loneliness and lack of friendships have been shown to be linked with more heart disease, viruses, and cancer as well as higher mortality rates.

Friendship is an interpersonal relationship also found in animals~mainly mammals and birds. Cross-species friendships can develop between a human and a domestic animal~a dog or a cat. Sometimes friendships develop between an animal and another animal of a different species. I can say that I have and have had friendships with my dogs. Max was my very close furry friend and buddy who is no longer with me! Cookie (different from before-mentioned Cookie) is still my furry friend and now my son Michael’s best friend! I have neighbors with a cat and a dog where the cat and dog are best of friends as well. Also, many times, we have seen a dog and a horse or another farm animal that the dog has befriended. Friendship crosses over too when a dog nurses another animal’s babies to health even when it isn’t another dog. Amazing stories come out of things like this too!

I recently blogged about my bestest friends~Ang, Susan, Kelbi, and Carlene. Each one of these people has brought so much to my life, has entered my life at different times,–perfect times actually–and each one of them is as strong of a woman (or Babe) as the next one! I have known Ang since we were 6 years old. Ang is the type of friend that I can have a no-holds barred kind of fun with. She is also the kind of friend I can trust with my deepest darkest secrets. She knows how to bring me out of my lowest points and how to make me laugh until I pee my pants! She supports me when I fear no one else will. I can text her at 3 a.m. She has come to visit me~jumped on a plane at a moment’s notice~because I need a friend, because she wants to share my excitement, because I need a shoulder to lean on, or just because she wants to take a trip somewhere fun or go to a concert–in a two bedroom apartment on a sofa bed in the sunroom or on an air mattress in my baby’s room to help with and play with him during the day and then watch a scary movie or two with me at night!!! Kelbi, Susan and Carlene all share my pain. I mean they all have a form of arthritis and fibromyalgia. I am able to call or email them any time of the day to talk about anything. It is especially wonderful to have friends who share something like this because they understand exactly what it’s like to not be able to get out of bed, to cancel appointments, to feel so fatigued you can’t even wash a bowl in the sink or stand to take a shower. They just “get me.” It is sad that what brought Carlene and Kelbi to me was the Arthritis Foundation. If it weren’t for our disabling conditions and wanting to help other young adults and other people learn to help themselves to deal with the pain and fatigue, we may have never met. If I didn’t have arthritis, I wouldn’t have been seeing a counselor, and I wouldn’t have been introduced to Susan. I have four Bestest Friends: Ang, Kelbi, Susan and Carlene. They each have entered my life at different times, in different ways, for different reasons~all staying to support me, love me, care for me, understand me, and always be there for me!!! Thank you so much. What would I ever do, where would I ever be, and how could I ever go on without you all? Please read more about them in my previous, more detailed blog about all four of these fantabulous friends in “My Bestest Friends!”

Also, please read more about my hubby; he is my lover~true~but we started out as friends. When we were married 11 years ago, we shared this quote with everyone, and it really summed everything up for us:

This day I marry my friend, The one I laugh with. Live for, Dream with, and LOVE!

Eleven years married~seventeen together~we still laugh together, live for one another, share our dreams, and love one another more and more each day. We are true friends with a romantic love for one another. To learn more about my significant other and how much he means to me, please read my poem to him, “Significant Other~Will Never Your Eyes, Soul, Heart Forget!!!!”

I began blogging to help myself. I thought of it more like journaling, the difference was that others had access to it. I didn’t even think anyone would read it~ever! I didn’t think anyone would be interested in my pathetic, boring life. I also started blogging before I did anything else online. I had an email address, and that was all. My grade school was searching and searching for me for our 20 year Grade School Reunion from 8th grade. Most didn’t know that I moved to Georgia from Missouri (with a couple stops along the way in fact). Most didn’t even know I was married. Almost no one knew I was in chronic pain, had chronic fatigue, was sick all the time, and had already had one joint replacement at that time, and was well on my way toward more. I basically thought no one would understand, no one would want to be burdened by me, and I would just end up being a bother t0 everyone. My life seemed to stand still, although we had moved several times. I had gone to a university and gotten my BS in Nursing. I had worked as an RN for a short while, and my hubby had also worked after getting his Ph.D. He was on his 2nd tenure-tracked position. We still had no children, and we had been trying to adopt in every state we lived~no luck!

Somehow I found out that people were searching for me through I found out that people wanted me to go on Facebook so they could find me easier. They thought I fell off the planet! Ang, that I mentioned before, was looking for me for a few years. Her parents passed away, and she was looking to re-unite with old friends that she shared a special friendship with when she was younger. I got the search on I contacted her, well when I figured out how to do instant messaging! I can’t tell you how excited I was to be chatting with her online! I didn’t even know what I was doing. I thought it was like the Jetsons at the time. I couldn’t believe it! She told me to get on Facebook as well, so I did. Before I knew it, I had become a new person. I loved it online! I was “friends” with all these people I knew from grade school, high school, and college. Then I started adding family to my “friends” list. I then started blogging more. I added my Facebook badge to my blog. Then others started asking to be my “friend” on Facebook. These people were actually reading my blog, commenting, liking what they read, and wanting to be my Facebook “friend.”
I then was being invited to join other social networks online for people with chronic pain~ChronicBabe, My Invisible Disabilities Network, Patients Like Me, etc. Then as my blog got more followers and more people knew who I was, I was introduced to this new exciting thing~blog carnivals!!! I began writing blog posts for different blog carnivals, and then I started joining people’s group pages on Facebook for their blogs as well as other Facebook pages related to chronic pain to which these other Facebook pages led me. I really started racking in the newFacebook friends online. I was up to over 1100 friends! It started getting crazy actually because I felt like I didn’t really “know” the people with whom I was friends. I decided to divide my personal Facebook into two separate profiles, one for family and friends that I actually knew and met and one for online friendships. This happened when we adopted our son Mick. It worked out well because I didn’t really want to post pics of him online for people to see that I didn’t really know anyway. Now that it has been a while, I have added to my family and friends profile online friends with whom I have built a relationship and trust. I like this so much better because I spend so much time on my family and friends Facebook profile but not very much time with my online friends profile. Some people are on both of course because they started on one and wanted to be added to the other. If you started on the family and friends and were added to the other, it was probably your choice. If you did the opposite, then I probably felt like I got to know you enough and trust you to add you to my family and friends profile. I am so happy to have you all on whatever Facebook profile you are. I care about all of you, whether I know you well enough to really love you as a true friend or care about you by association because of a common cause or interest, etc. So thank you all for that!

I find it so amazing how the internet works now. I met people on social networks other than Facebook, on Facebook itself, through my blog, through other blogs, and in groups on Facebook. I have recently looked back at old conversations and comments with people that I have met online. I have had their support and have been supporting those same people from the beginning! Our friendships are long-lived and strong. We have fought the same battle. We have lived lives so similar, so challenging, and with so many struggles. We think about people with whom we see and talk in our everyday lives that mean so much to us, and of course those friendships are special. But, I can’t believe how much my friendships have meant and still mean to me that I have made online. The nice thing about my online friends is that they are always there! I turn on my computer, and your smiling faces are all right there staring at me. I can’t tell you what that means to me. Well, I guess you all know, because you see it too!  It is a wonderful feeling to be able to find someone at any time of day anywhere in the world at your reach. I never thought I could have friends from Ireland, England, Germany, Canada and even within my own country in other states~Texas, New York, etc.~who all seem to live together inside my laptop. Thank you all for always being there.

There are so many people out there who don’t “get it.” My online friends are very important to me. Many of them are true friendships that mean as much to me as do my friendships with people that I can touch, see and go to lunch with~some even mean more to me depending on who we are talking about. There are a few groups of online friends that are going through such similar things as me healthwise or know someone going through the same thing that I am going through that they can sympathize or empathize with me. I can think of a few online individuals who I know for a fact desire what is best for me because they have told me over and over again how to take care of myself because they want to see me as well as can be. I can also even pinpoint a select few who are so honest with me that they would outright tell me to stop doing something because it’s not a good idea and do something different for myself immediately because they care about me as friends. There is a mutual understanding and compassion there, and I will always be there for them just as they are always my emotional support. I am able to be myself. I don’t have to act like someone else in their presence. I am never judged, and I do not ever judge them. We trust each other and enjoy each other’s company. And like I stated before, all of this is important to have a true friendship~honesty, trust, sympathy, respect, as well as helpfulness.

Now it doesn’t mean that I am ditching my friends in “real-life” to be with my online friends all the time. And I never said that I like the friendships in “real-life” more than my online friends either. They are just different types of friendships. The relationships are all together different, but I am still the same person. I don’t have to change, and that is super-important. All of you get to know that I like to joke even when I’m not funny. I like to talk a lot, so for my online friends, it comes across as “wordy” most likely. But, ya know, if I took out a lot of those words and adapted to this new form of “texting” and chatting, etc., well, you just wouldn’t get the “full effect” of the true “Dana.” I’m expressive. And with expressive, well, comes lots and lots of words…

Now, I was going to end here, but I feel it’s important to add that with all my talk about how important friendships are and getting to know people online, I wanted to add that I recently was introduced to a fellow blogger, Sweet Sara (Gitzen Girl). She blogged about being homebound and having Ankylosing Spondylitis. She very recently got sick, very sick, so sick that she did not get better. She passed away Saturday, September 24th at 11:14p.m. from complications of A.S.
Thank you, Sweet Sara, for becoming an online friend to so many people…

Did You Know By Cookie

Posted in The Blogs By Cookie, Week 08: Friendships on August 29, 2011 by Cookie Has A.S.

When friendship was suggested for our Masquerade of Words weekly topic, I knew exactly what I was going to write about. I thought this is going to be the easiest topic I ever do.  I couldn’t have been more wrong. It has turned out to be the most difficult one so far.

My first thought was to share with you the story about my best friend, Diana. I met Diana when I was a young girl, and through a very difficult time we managed to become best friends. I sat beside her for several years watching her battle against bone cancer. I learned the meaning of helplessness, but most of all I learned the true meaning of courage and strength. My best friend Diana died seventeen days after her sweet sixteenth birthday. She has been gone for thirty-five years and the loss is still as deep as it was the day she left us. I find myself not able to find the words to tell you what her friendship meant to me and still does.

So I decided I would share with you how Ankylosing Spondylitis has affected my friendships through out my life. I was going to share with you how one of my close friends said, “You know what, your life is such a drag Cookie. You are always sick or hurting or have a tragedy in your life. I just can’t deal with it.” I ended my conversation with her by saying that I am sorry my life is so difficult for you. I hung up the phone and never spoke to her again. I worked beside her for many years never saying a word. She abandoned me during one of the hardest times of my life. I had just lost eleven people I cared for that year. I was battling one of my worst flares of Ankylosing Spondylitis, it ended up being one of the most difficult periods this disease would ever cause for me.  I had just shared with her that the doctors told us that my grandson was going to die, and we should consider him as an organ donor. Hunter was two months old at the time, and that was her response to me, “your life is such a drag.” I am sure Ankylosing Spondylitis has cost all of us dearly, when it comes to our friendships and relationships.

Then I thought I would write about how we should all be our own best friends, how we should be kinder to our selves and forgiving just like we would be to other people, but we know that already. We should be the friends to our self that we want from others.  I’ve learned the hard way just because people didn’t love me the way I needed them to; doesn’t mean they didn’t love me with everything they had.  I have struggled really hard with this blog, because I couldn’t find the right thing I felt I should share with you that you didn’t already know or had experienced yourself.

I have started this blog over more times than I care to admit. Wondering what should I share with you, what experience, wisdom, or understanding could I possibly write about? I have five word documents started at this very moment about friendship; none sharing the right story that I feel is somewhere deep inside my heart.

Yesterday, August 16, 2011 I decided I would search the Internet for inspiration, or at least a cute picture about friendship I could share with you.

Most of the images were of best friends, something I can’t write about. I was just about to give up when I found it. My inspiration.

“ A friend is one to whom one may pour out all the contents of one’s heart, chaff and grain together, knowing that the gentlest of hands will take and sift it, keep what is worth keeping and with a breath of kindness blow the rest away.” Arabian Proverb

That hit a chord deep within my soul. I had never seen the meaning of friendship spoken in such truth. Then it hit me, what I would write about. I have that. I have that kind of friendship in my life. In fact we all do. We have it in each other.

I am sure a lot of people would argue about the definition of best friend, I would have also, until I found this quote.

“My best friend(s) is the one(s) who brings out the best in me.” Henry Ford

This is each and every one of you, you allow me the freedom to be myself, and you all bring out the best in me. You have given me the strength and encouragement to look deep within my self and find the person that I was meant to be. I am a better person because I have known you. I am the best that I am able to be, because of you.

I came across another quote that was the deciding factor in what this blog would be about.

“ Do not save your loving speeches, for your friends till they are dead: Do not write them on their tombstones, speak them rather now instead.” Anna Cummins

So I decided I would write to you all about something you didn’t already know. I wanted to share my feelings about my best friend(s).

My best friend(s) are a small group of people who suffer from Ankylosing Spondylitis.

I wanted to share how much each and every one of you means to me, and how important you have all become to me.

Each day I look forward to signing on and seeing what new things you all have posted. I want you to know how much I feel connected to each and every one of you, even over the Internet. It has been life changing for me to know that I have a close group of friends who GET IT. I don’t have to explain my bad day; I simply have to say I am having one. No explanations needed, just acceptance and understanding. I know that in my heart I can count on any of them to be there for me.

“ It is not so much our friend’s help that helps up as the confident knowledge that they will help us’” Epicurus

I know in my heart that when I am struggling there is someone there to offer me encouragement. I know that when I am heart broken there is someone there to offer me compassion. I know when I am unable to find the words to express myself; they are able to hear me. I can’t begin to tell you how much everyone has helped me during this part of my journey. There are times for me, that the only friend I feel I have in the world is you. I don’t have to hide behind a wall; if I do it’s a wall of glass.

You all see inside my soul because you see your self there as well.

I know that when my world becomes dark, that I am never alone, because of you.

I wrote this quote a long time ago.

The eyes are the windows to the soul; if they look they would see.

Only the broken and shattered pieces that are left of  me.

Each of you has had some part of helping me glue myself back together. I may not be perfect but I am whole.

“Walking with a friend in the dark is better than walking alone in the light.” Helen Keller

I know that from this day forward I will never again walk in darkness alone.

I can’t express to you what that means to me, but I don’t have to because you understand.

Ankylosing Spondylitis hasn’t changed the person I am, only my purpose.

I may not make a significant change in this world, but you have made a significant change in mine.

I feel valued, understood, accepted and loved.

“In the end, we will remember not the words of our enemies, but the silence of our friends.” Martin Luther King Jr.

What is a friend? I will tell you. It is a person with whom you dare to be yourself. You do not have to be on your guard. You can say what you think, and be genuine… just you. They understand those contradictions in your nature that lead others to misjudge you. With them, you breathe freely. You can avow your little vanities and envies and hates and vicious sparks, your meanness, and absurdities and, in opening them up to them, they are lost, dissolved, on the white ocean of their loyalty. They understand, as you do not have to be careful with them. Best of all, you can keep still with them. It makes no matter. They love you. They are like fire that purges to the bone. You can weep with them, laugh with them, and pray with them. Through it all – and underneath- they see, know and love you.

Thank God for friends, as they are one of life’s true blessings.

Friendship to me is……….

Finding that

Real person who

Is always by your side and

Eager to help you in your time of

Need, someone who

Doesn’t want anything from you except a

Sincere, loving, giving and

Honest friendship; the kind that you carry

Inside your heart even when they are no longer a

Part of your life.  By Cookie

“ No man is useless while he has a friend.” Robert Louis Stevenson

Thank you, from the bottom of my heart and the depth of my soul.

Dedicated to my Ankylosing Spondylitis Family.

The Power Of Friends By Kate

Posted in The Blogs By Kate, Week 08: Friendships on August 29, 2011 by Cookie Has A.S.

They can amaze you.
They can surprise you.
They can support you.
and they can sometimes even let you down.
One thing I have learned since my first friendship as a child is that friendships evolve as you mature even the new ones you make as you go into your 30’s. Friendships also vary depending on what you have in common with the person, be it an illness, hobby or other person. Some friendships also vary widely by age. Often many of my friends are much older than I am but I have always liked that about my friends. Most times, not always, there is more maturity, more respect and more satisfaction with who they are and who others they know are- this is why I think I choose older friends. I think older people overall have a more stable attitude and outlook on life and are more calm. Now a lot of people my age (early thirties) aren’t ready to be around such calm friends but at this point in my life that is what I require. Being chronically ill I cannot be like other “normal” women. (I hate that term because I don’t believe in normalcy anyway but for the sake of argument and discussion we will use it here) I require in my friendships peace, support and love. Just like I expect the other person to receive these from me as well. Friendship to me is all about give and take- HUGE with me is give and take. Sometimes obviously one person gives more than takes and vice verse but that’s where the support and love comes in when someone is struggling. It’s true we want someone who is confident at least partially with themselves and has an optimistic outlook because if they didn’t how would we ever make it out of our black holes? There has to be some sort of balance because not everyone is always happy nor is everyone always perfect. We are all human after all and have emotion. We must be there for one another. Compassion, sympathy, empathy and love. I have felt abandoned by friends in the recent past, turns out I was pretty wrong, but still it hurt and I managed to torture myself in my head about it when all I needed was a little extra confidence and love at the time. My advice if you are in those situations is to just be honest with your friends. What would it have hurt for me to be honest with them? Nothing.

I value my friendships highly. They mean as much as family to me. Sad? maybe but my heart tells me it’s not.

The most I can do for my friend is simply be his friend.
~Henry David Thoreau

The only way to have a friend is to be one.
~Ralph Waldo Emerson