Merry Christmas (To Us All)

Image from http://misadventureswithandi.com

It’s Christmas! Whether it’s already the 25th where you live or whether you celebrate on the 24th instead of the 25th, Christmas time is here. Now, I’m ready for it.

I know that over Thanksgiving things were a little harder and I wrote two posts, one entitled Unhappy Thanksgiving (To Me) and Happy Thanksgiving (To You) hence the title of today’s post, Merry Christmas (To Us All). Around the first of this month, I was thinking that Christmas this year would be just like Thanksgiving – completely BLAH! However, I have found that somewhere along the way I started to become more and more prepared for the holiday at hand. I may not have a huge family to share the day with or, I may have a huge family but I am unable to be with them because my illness prevents it (probably both). I have tried to have a more positive outlook than I did this summer when I found out that the adhesions are here to stay. It is my job to learn how to live my life around them. It was a hard pill to swallow (and I have swallowed some doozies in my day) and I did fall into somewhat of a depression. I don’t know when, where, or how, but it seems I have pulled myself out of it. I have learned to be grateful for what I do have. I am still able to eat a Christmas dinner while some people with adhesions are on liquid diets. I have one big someone and three smaller someones to spend Christmas with while many have no one. It may be a little difficult for us right now, but things seem to be looking up. And, I have food to prepare for Christmas dinner while many will go hungry.

My life may not be perfect (hell, it’s never been perfect) but it is the life I have been given. For some reason God thinks that I am strong enough to handle it, so handle it I will! I will also be grateful for it. I AM STILL ALIVE. That’s all we can really ask for anyway, right? The rest is just icing on the cake.

Company 4 Christmas

For any of you who will be alone on Christmas, there has been a blog set up for you to “chat” with others so that you feel a little less lonely. The address is http://companyforchristmas.wordpress.com WordPress has given me so much; so many good friends. I will take Christmas Day to give back to WordPress. I will be volunteering at CompanyForChristmas on the 25th. I don’t have a specific time set up to go. When I find I have a little free time, you will find me there. Just look for my page Joynpain2 in the sidebar. If it’s there, so am I. If it’s not, I’m sure you will find many great volunteers that you can chat with for a little while until I get back. There are a couple of things you should note. If you are using your computer’s browser, you will need to refresh often. If you are on the WordPress app (according to my trial run) you should get notification almost immediately. I hope to see you or someone you know who will be alone (or even just feels lonely) there.

I’m not a rich woman. Hell, a lot of times I have trouble getting my bills paid. So obviously I don’t have gifts to give to you, my friends. Some of you I have become extremely close to and I cherish every moment that we have “together”. There is one gift that I can give you, and that give I give with my whole heart. I give you the gift of my friendship. It’s not much, but it’s given with love. Merry Christmas everyone!!! I hope that it is truly magical for you and your families.

Image from: http://downloadwallpaperhd.com

The Parliament Award

I have written many times before about the strength of the bonds made by people on WordPress.  I was a sad, lonely, misunderstood woman living in chronic pain and without anyone to understand what I was going through.  The closest I had was my Ob/Gyn, but you can hardly consider a doctor your friend (not a close friend) because you can’t call them to talk when you’re lonely or write to them to tell someone what’s really going on in your life.

I have made some of the best friends since joining WordPress.  Friends that I can talk with on the phone when I need to forget about my pain for a little while, or chat with on Facebook just because.  Friends that know how I feel either because they are in pain themselves, or because they are going through some of the same issues that I am at home.  One of these friends, Bishop Eddie Tatro has done me the honor of receiving his Parliament Award. Fr. Eddie has a great blog where he writes on issues spanning from religious articles to articles on chronic pain issues.  Here’s the background on The Parliament Award:

Everyone knows that I love owls and wolves.  We know that a group of wolves is called a pack, but did you know that a group of owls is called a Parliament?  Owls have for centuries been symbols of wisdom and love, and wolves are a symbol of strength, loyalty and family.

I’ve created this award for those people who are in my Parliament & Pack.  You mean so very much to me, and you all show what I stand for: Love.  Hate is not part of your vocabulary.

 

Here are the Rules:

1.  Firstly, display the Award on your site (see Award page or sidebar!) You earned it and you deserve it!

2.  List a few things that make you a loyal member.

3.  Thank the person who nominated you and link back to their blog.

4.  Nominate at least five (5) well deserving bloggers whose loyalty and love you value and consider part of your Parliament and Pack; for the Award and let them know the wonderful news by sending them a message on their site.

 

Ok, here goes nothing.  I am a loyal member because:

1)  I am always there for a friend when needed.

2)  I am loyal and supportive.

3)  I am sensitive to other’s needs and know how to listen.

 

Five bloggers who I consider part of my Parliament:

1) Tammy: Walk With Me on My Journey of Illness…
2) Brian: Mountains or Mohills
3) Julie: The Nocturnal Laundress
4) Jenn: My Fibrotastic Life
5) Leslie: Just Another F-Bomb

A Picture Is Worth a Thousand Words

Since I’m not feeling too good today, I figured I would give you a peek into my world…

Six Years

Six Years

Today was the end of year six, and the end of us.

I know the pain has changed me.
Has it really changed me that much, or are you just naming blame?

The one thing I wanted from you was understanding.
I never expected you to fix me, just love me and understand me…apparently that was too much to ask of you.

I just don’t understand what went wrong.
I don’t know where your love went…or was it ever there?

So many things I have found to be un-truths.
Were we an un-truth also?

Why would you tell me what you think I want to hear?
What I really want to hear is the truth…how you feel or felt.

You don’t even understand the damage you do to me when you walk by not acknowledging me.

Am I just a piece of furniture? Do I not exist?

And when questioned about whether or not your family’s love was true, you kick me while I’m down by saying “I guess they have their reasons not to love you.”

So, I’m not only losing you, but a family too?

I find out that you thought I was faking…until you heard the doctor and saw the pictures.
Was that not enough to prove to you that I didn’t make this up?

I didn’t want this. I wanted us. I didn’t mean to change, it must have just happened.
But you changed the most.

You used to believe me. You used to support me.
I used to not be a burden.

When did that change? When you found out it was real?
When you realized it wasn’t going away?

And if I was the one who changed, why did you say you were sorry…that things…you…would get better?

I don’t see things getting better. I see you walk by me as if I don’t exist. You don’t love me, but you “feel bad” leaving me this way.

Don’t worry about me…I will be stronger. I will be stronger without you and your lies.

It will take time for my heart to heal from the damage you have caused, but I will be fine.

I will grow stronger and I will have learned a very important life lesson.

I will not trust so easily, I will not love so easily.

Not unless I trust myself first. Not unless I love myself more…illness and all.

Even if it takes me six or sixty years to do so, I will love myself first.

Daily Dose of Passion

Daily Dose of Passion.

Another Friendship Lost…

I don’t know what feels worse today…me or my broken heart.

I have had a low-grade fever every day since Sunday. Yesterday I called to let the doctor know that I had forgotten to tell him about it at my appointment on Monday, but at the time it was high too. Just now when I checked it was 99.8. That is actually a little higher than it seems because my normal temp is 97.whatever instead of 98.whatever. I thought about driving to the doctor, but with my head spinning, that probably isn’t a good idea. I don’t know what is going on. All I know is that this is unusual for me.

I sent an email yesterday to an old friend of mine. Actually, she is the one that I got my two girl dogs from. A short time ago she made a leap of faith and took a job in Boston without knowing anyone there or having a place to stay. She has made stranger things happen, so I convinced her that it was a chance worth taking. She is now in a great job there and as far as I know doing well. She has texted me a couple of times, but never an email although I have pleaded for her to write me and let me know, well, how things have been for her since she moved. She is either too busy working or at one point even said to wait until she had internet at her new apartment because she didn’t want to write an email on the phone. So, yesterday, since Bailey is back home and healthy I figured it was time for us to catch up. Even if she didn’t have much to say to me, she could at least read the email. I put the subject line as “Bailey” but I told her about my two surgeries and how I was doing better. I told her about this blog (although to be completely honest I never figured she would take the time to read it, but I hoped she would).

She wrote me back today

“Not gonna lie. I’m having a difficult time even reading this. Due to the subject line. I can’t handle any more bad news so I’m gonna pretend I didn’t get it until another day. I love you.”

Really?  The subject line?  We haven’t spoke in like 6 months and she refuses to even read the email. I burst out in tears. I understand that for whatever reason she is going through a hard time (probably work) but who doesn’t read an email from a good friend. A friend who took your dogs when you decided to travel the world so that the shelter wouldn’t put them down. A friend who let you stay at their house for over two weeks wiping your tears because you were having family and job problems until you decided that it was time to spend 3 months in Brazil. A friend who is sick and at home and just might need you. That is the “friend”‘s email that you refuse to read? So, I wrote her back saying this:

“You know, H***, I guess with all your new friends there, you don’t care about the old, sick ones here. I have been needing to talk to you for a while, but you were busy or couldn’t write an email on your new phone…I get it. Bailey WAS sick but is FINE now. I’m the one who is STILL sick and friendless. Do me a favor and don’t read the email. I put that as the subject line hoping that you would take some time out of your busy schedule to read it…guess I was wrong. It’s a mistake I won’t make again.”

So, chalk another friendship lost to chronic illness. You would think that I would be used to it now, but I’ve never had anyone be so blunt. They just slowly stopped calling or visiting or writing. I guess it is my own fault, but you know, with friends like that who needs enemies? Oh, no, I had forgotten about one. When I finally got up the courage to write something on Facebook about being sick, I did get a few replies from some old friends. When I posted “The Spoon Theory” in Spanish for M-‘s family (who I call my family) do you know that not one person responded? A few asked him about it, but not one of my “family” had the decency to respond. I think I will stick with my WordPress family. You guys always understand and almost always comment. At least I don’t feel so alone.

 

Last Night’s Tonglen Exercise

Last night I was having trouble going back to sleep after being woken up by pain. One of the exercises I remembered from the book “How to Be Sick” was the one on Tonglen. Basically, it is deep breathing like when you meditate, but instead of breathing in health and good feelings and breathing out your pain and suffering, it is just the opposite. You breathe in other’s pain and suffering and breathe out love and joy to ease that suffering. I don’t know why I felt the need to do this. Perhaps it was knowing that others are out there suffering just as much or worse than me. So, this is how it went:

(Remember first is the breath in, next is the breath out)

– For all of you who can’t sleep
– I wish you sweet dreams

– For all of you in pain
– I wish you relief

– For all of you who are suffering
– I wish you peace

– For all those who are lonely
– I am with you

– For all who need to be believed
– I believe you

– For those who need to be loved
– I love you

And that is the last I remember before falling asleep. I don’t know why I haven’t tried it before. I have always said that I have so much love to give. I love my dogs and they love me back unconditionally. I love M- and he doesn’t even want to talk to me half the time, so I sort of feel like that love is wasted. I don’t have a child, and never will, so there is another missed opportunity to share my love. So for some reason, I sent that love and understanding, the belief of symptoms, the peace from suffering, the relief from pain, and the wishes for sweet dreams that I don’t get to others who need them. And I suppose I sent those things to myself too, because somewhere in there I found the peace that I needed to fall back asleep.

I guess it’s a reminder that before someone can truly love you, you have to love yourself first. As long as I can learn to love myself with my illness and my defects then maybe I can receive love and understanding. It makes me realize how hard it must be for M-. He used to have someone he could go out with and have a good time. Now I just lie around in bed sometimes without the strength to even shower much less do things around the house. The woman he had is gone and just the sick shell of a person remains. Why should he love me? He should be running for the hills looking for someone worthy of his love. And then I am grateful that he is still here and giving me the chance to find that love for myself that I lost along the way. Once I find it I will be able to see that he does still love me, or if not, I will have the strength to send him on his way. Either way I will love myself again. Right now I don’t.

 

A Little Bit of Peace

For the first time in a long time, I feel loved again. M- and I had this heart to heart tonight. We talked about how I don’t want his pity when I say I’m hurting or that I’ve had a bad day… all I want is for him to hug me and say he understands. That’s it. No more, no less. I don’t expect him to fix me. He, however, is in ‘fix me’ mode.

We finally found out what adhesions are called in Spanish. I looked everywhere! My one trusted site for all things translated ( which you can find here if you ever need something translated…DO NOT USE GOOGLE TRANSLATOR!!!) actually had it right, but who believes me anyway? So, we found out because it turns out that his new (well, not that new…4 years, but that’s considered new in his family) sister-in-law just so happens to be a nurse…and quite educated at that. I don’t know exactly how the licensing compares, but she’s at least an RN if not higher up than that. So, when we went to pick her up from Memphis (don’t ask- that was one road trip I was completely against but got indoctrinated into going (“because it’s the right thing to do. She just got here. You’re the hostess. She’s family.” yada yada yada…and yes, I have recovered from it…finally) she had wanted us all to stay for dinner there at her cousin’s house, but we couldn’t because of little ol’ me :(. That’s why later we got on the topic because I was trying to explain to her that I was sick and had just been convinced into making the trip anyway, but that just the trip was hard on me. She wanted to know why and I told her I didn’t know what they were called in Spanish (she doesn’t speak English) so I talked about them. Right away she knew what they were and of course, what they are called…”adherencias”. See, you didn’t know you would get a Spanish lesson reading my blog, did you? Whew, I have got to learn how to tone down the talking…writing…in circles bit…I wear myself out! I can only imagine you guys having to read it. But, this is how my brain works. Sorry.

So, back to the point. We learned what adhesions are in Spanish (echo, echo) so M- gets on the computer and spends like hours…probably 5 maybe 6…looking up adhesions, reading about them, looking up doctors who specialize in adhesion removal. He found a specialist in Puerto Rico, Spain, and said something about Cuba until I reminded him that we still weren’t allowed to go there (although I do agree that a lot of damn good doctors have come from Cuba…I’m just saying…). He watched videos of the adhesion removal being done. That’s what surprised me the most was him watching the videos. He’s kinda squeamish about that kind of stuff. Now that he has ‘researched’ adhesions he has decided that I AM having surgery done because that is the only thing that will “fix me”. I try to remind him that there is a 50% chance that they will just come back again, but no! That is the ONLY choice in his mind.

To get back to what I was saying at the beginning, we sat down and REALLY talked. We talked about how much it hurts him to see me in pain. How it kills him inside to see me cry because he feels completely unable to make me feel better. He has learned that the only way to deal with this (because guys can’t show weakness, you know) is to get mad, or to try to “pass” some of his strength to me (which usually just ends up in him saying the wrong thing and making me mad which would just make him mad and say the things that would REALLY push my buttons and really set me off…you get the picture). I told him that I completely understood. That besides the pain, mentally I’m dealing with trying to accept that this will be my life…for the rest of my life…or if it is worth risking another surgery. I deal with thoughts at times that it would just be easier to end it all than to suffer like this, but then I counter that with HELL NO, I can beat this, I can handle it! I deal with thinking that he would be better off without me, he could just find a “normal” woman. To that he countered that he would never leave me like this, that I’m his soulmate. I wholeheartedly agree. I believe that God sent him to me because he knew I wouldn’t be able to deal with this myself. But at times I feel that I have brought much more suffering into his life than joy and that it is unfair to him. He disagreed.

Anyway, this banter went back and forth (I even saw a tear that he tried to catch before I could see) for well over two hours. We ended up finally understanding each other for the first time in close to a year. Around 2:00 am we went to sleep in each other’s arms instead of him turned one way and me turned another (of course we always end up that way anyway just because that’s how we sleep. But the point is that when I woke up at 4:00 am, we were still holding each other and it made it all worth it. Those two hours of him holding me made the whole year of arguments worth it. I have him back. I don’t know if he was lost in himself with all the stress of having to deal with me: seeing me in pain, seeing me go in for various surgeries and not knowing if I was coming back, seeing me emotionally torn in two. I think it was all of it. I better understand his side of things and at least for right now he understands mine. I don’t know why we were able to have this talk tonight when I had tried so many times before, but I thank God we did. I’m sure he had a hand in this one too, because M- even said that we needed to go back to church. For so long I have been unable to sit on those hard pews, but now I have a cushion I can take. I argued at first that I thought God had abandoned me a long time ago and I wasn’t sure if I could do it. He said that was exactly why we needed to go, because sometimes he felt the same way, but that both of us should know better than that. Maybe it was us who had abandoned Him. Maybe he’s right. All I know is that for tonight, all is right at my house. I have learned to live in the moment because that’s all we’re really promised. I feel some peace in my soul for the first time in a long time. Maybe I wasn’t abandoned after all…that’s all I’ve wanted for quite some time now…just a little bit of peace.

My “Babies”

I am home by myself most days. I get a peek at the real world when I have a doctors appointment or when I go grocery shopping, but that’s about it. Of course, there’s always TV, but there is no social interaction with the TV set. At least I speak to doctors and nurses and the check-out ladies at the store. However, that doesn’t really count. Yes, I know, I have a sad, sad life 😦 lol. Actually, I am happy with where my life is today. I am learning that all we are promised is right now-this moment. There is no guarantee that there will be a tomorrow, so why should I worry about it? But I am getting a little off subject here. I was talking about being alone. I just so happen to be one very lucky woman because I am never completely alone. I have three wonderful dogs who I share this life with. Each one has their own personality and they never fail to get me out of bed everyday (well, you know I do have to get up to open the door and let them out occasionally or it probably wouldn’t be a very pretty sight lol). First is Molly. She is a Beagle mix (not sure what she’s mixed with) that I adopted from a friend who had just graduated college and was off to take her first job as a graduate in Prague. Obviously she couldn’t take her dogs with her (and her ex-husband didn’t want them). So, I adopted Molly. She is the most like me. Very laid back and patient. She is so cute because a lot of times she will lie down and cross her two front paws as if she were crossing her legs. I say she’s just being prissy when she does it, but really she is my little princess (or she thinks she is anyway). Next is Bailey. She is actually Molly’s sister. So,what happened was that when my sister met Molly she fell in love with her (mostly because she was already housebroken) and said that she would adopt Bailey. Well, that lasted maybe two months before she let me know that she couldn’t handle her because she kept messing all over the place and she was supposed to be housebroken (my sister is a topic for another day – no, it would probably take more than one post to completely describe her – I spoke about her some in my previous post. Let’s just say that she is irresponsible and indolent and I will leave it at that). Well, I couldn’t really take her back because my friend was like packing already for her move. So, what happened to Bailey? She has been safe and sound here with us. Funny thing is that since she’s been with us she uses the bathroom outside like she’s supposed to. I don’t know why she acted up with my sister. Maybe she didn’t want to be there or maybe they forgot (or were too lazy) to take her out and a dog is going to use it wherever if you don’t take them out. So there they were, the sisters happy to be back together and keeping me company. Until one day M- comes home with a surprise for me. “Go out to the truck and look. The surprise in on the front seat.” I go outside and what do I find in the front seat of the truck? Just one of the most unique and beautiful puppies I have ever seen. He even has this birthmark (or just a patch of coloring) that looks just like a mushroom. I wanted to name him Hongo or Hongito which means mushroom or little mushroom in Spanish. Of course M- thought that was a lame dog name and decided that he should be named Jefferson. His argument was that he was born in Jefferson county, so he should be named after his birthplace. He has now decided that if we ever get another dog, it should be named Lincoln or Washington. Notice the connection? Anyway, M-got his way and we named the puppy Jefferson. That was over two years ago and my “baby” is all grown up. He thinks that he is the “man” of the house when M- is not here. M- bought him thinking that he was a pit bull, but the vet says that he is actually an American Staffordshire Terrier. A cousin to the pit bull, he looks like one but is shorter and stockier and has a much better temperament than pit bulls are believed to have. Of course, to the insurance company he is still considered a pit bull and therefore either denied me coverage or wanted to charge an arm or a leg. Either way, he is part of my family and is not going anywhere. But, again, I am off subject. Jefferson is quite a sight. He has sort of taken over the house. He is convinced that he is still little and a lap dog (yeah, 70-something pounds of lap dog when you hurt doesn’t work out that well. But he has learned to be gentle with me. Whenever the pressure of dealing with chronic pain gets to be too much to handle and I cry, he comes over and tries to lick the tears off my face. I couldn’t have asked for a better companion. So, like I said, I am never REALLY alone. I have three little ones who keep me company, give me the strength to get out of bed on days that I’m sure I can’t, and never fail to make me laugh.

P.S. (well, not exactly p.s. but completely new subject) My surgery is tomorrow morning. The general surgeon decided to opt-out and leave me with a hernia because he believes that it would be more dangerous to fix it. “In the future if it ever becomes a problem we will deal with it then” (yeah, because it is so much easier to do a whole other surgery than to fix it before it becomes a problem, right? Am I the only one who doesn’t understand this way of thinking?). So, my surgery will consist of going in and seeing if it is possible to remove any of the adhesions to relieve some of my pain. If it is too “messy” in there, then he said that he won’t risk removing the adhesions, but will take plenty of pictures which will hopefully help to get me in to see an adhesion specialist later. He is also going to be removing a uterine polyp and injecting something into my pelvic floor to try to help with the pain. Can you believe I am still not really nervous? Maybe it will hit me when I wake up at 4:00 am to get ready to go and I can’t take anything for my nerves (figures, right?). To top it all off, M-‘s nerves have kicked in. He is scared shitless. I guess that just proves how much he loves me, huh? And, it makes me angry with my sister all over again. I’ll be asleep and won’t care if she’s there or not. But M- is going to be doing the waiting and the worrying all by himself. It’s just not right. Anyway, I just wanted to let you all know and depending on how surgery goes depends on how long it takes me to post again. So, wish me luck.