Thank you and !!COME BACK!!

Hi Everyone,

C4C had an amazing year. There were 149 different visitors just on the day, with 1,635 comments. Last year we had 335 comments, which means we had over 500% more chat this year!

Partly I think the new system made it easier to manage, and easier for visitors to navigate. Of course, the sprawling readership of Rara helped, as did the numerous people who posted badges. My thanks to everyone.

There was talk about doing C4C for other times of year. Perhaps I’d need to change the blog name for that? And not to Company for Valentines Day which unlikelyexplanations pointed out would be C4VD! Ick! We will see….
Read more of this post:

Thank you and !!COME BACK!!.

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My Messed-Up Mind

I just saw a commercial for St. Jude children’s hospital. There are so many innocent children with cancer. It is sad and totally unfair that they should go through the hell that they go through.

Here comes the messed up part. The commercial made me cry. Why? Not for the children, but for me. I know that it is so completely selfish of me, and I am ashamed to admit it, but it did. I guess you’re wondering why it made me think of me. Well, to be honest, I envy them. I know that it is completely insane, but that was my reaction. I was jealous because I have thought on multiple occasions how much easier my life would be if I had cancer instead of adhesions that cause chronic pain.

First of all, people would better understand what I’m going through. There would be no confused looks when they hear of my uncommon, invisible illness. They would understand when I say I’m exhausted after having done absolutely nothing. They would understand when I say I’m in pain. I wouldn’t feel as though I had to explain myself all the time, to explain how I’m not lazy, but sick.

Second, cancer has two outcomes. One, you go through treatments to find out that the cancer is in remission. Or two, you go through treatments and find out that they haven’t worked, and you die. I know this sounds extremely harsh, but that is how it is. I don’t have those options. There are no treatments that will make my adhesions go into remission. They will always be there, making my life a living hell. Sometimes, so much of a hell that I wish, no, pray that God will just end it. I pray that he ends my suffering, and my loneliness. I would no longer have to deal with people’s misunderstanding of me, my illness, and my suffering.

Third, I’m jealous of the children’s strength in the face of adversity. They are so strong, so resilient. They are fighters through and through and through. I wish I had their strength to face my own adversity.

Maybe I’m wrong for this. I’m sure I am. But this is how I feel at times…so misunderstood that I wish it would end. I wish the pain would end. I wish the suffering would end. I truly feel for those children. I know that they are probably suffering the same or more than me, and I am truly humbled by their resilience. It is not fair that any of us have to suffer. I’m just voicing an opinion that I probably am not alone in having. I’m sorry if I have offended anyone with this post.

Dear Mama,

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It’s been a very long time since I last wrote to you…10 years almost. I guess the reason why it has been so long is because sometimes I talk to you as if you were here with me. That, and because I know you can see me and are watching over me. To be honest, that thought has brought me a lot of peace over the years…and a lot of grief. I worry that I have let you down. I know that you had such big plans for me – for my future – and that I have failed you in every way possible. I have made a lot of bad decisions along the way that have had a negative effect on my life. I was once again going in the right direction when I went back to school. I knew you were proud of me then. But of course, those negative decisions I made came back to bite me in the ass.

I was so very grateful that you were not here to see the fiasco of ’05. I know it would have broken your heart. Also, I feel I should apologize for not moving with you to Georgia. I should have been the one to take care of you. School could always have waited. I am so sorry that I chose A. and school over you. It was wrong of me and I know you must have been scared and lonely. I should have been there. Also, I felt really bad about signing the DNR in 2003. I know that you never wanted me to have to go through what I went through with that. I felt so bad for such a long time because I never felt I got the chance to say goodbye. You do know I was on my way, right? We were looking for a parking place at the hospital when they called to say it was too late. That was the worst type of pain – the emotional – knowing that you’ve made the decision that kept you from seeing your mother for the last time. Of course now I know that it would have been cruel to allow them to keep you alive just for me, I also know that maybe you chose this time specifically. You wanted me to know that I had almost made it, but you knew the drama that would ensue, so you chose to go early. At least that way you got the eternal peace that you needed. I probably would have been selfish. Thank you for giving me the strength to make such a tough decision. I know you wanted to go, it was time. You were ready for the grace you had been promised. I understand that now.

I talked to Aunt Donnie a bit before she left here to be with you there, and she made me feel a lot better. I’m sure she said exactly what you would have. She asked if I could ever remember a time when you were disappointed in me. I thought for a good little while and couldn’t come up with one. She told me that’s how strong your love for me is. That you were incapable of disappointment in life, so why would you be disappointed in me now? She said that you know I didn’t plan to get sick, that no matter what, you were always proud of me. Always were and always will be.

34482_1363327444808_1280251565_30965876_5705448_nThat got me to thinking about unconditional love. You were my very best friend. You were the one person in the world who has ever loved me unconditionally. Now that I don’t have that kind of love anymore, I long for it. I know now that it’s God’s gift to me but you know, it just doesn’t feel the same. I love you and miss you with every fiber of my being. Please know that I strive daily to be more like you. I’m honored when someone compares me to you because to me, you were truly a gift from God sent to earth. By the way, I have learned how to crochet now. I enjoy it because I feel closer to you as I work with it. I need your help to make the right decisions in my life. Things are really complicated and I would love nothing more than to be able to be in your arms while I tell you all of my troubles. You always did give the best advice, without judging. I need that understanding and I need you to comfort me. Since these things aren’t possible, will you send me the person who is supposed to hold and comfort me? I desperately need that unconditional, understanding, comforting and caring kind of love. If he’s here, teach him what I need. I will always hold you in my heart. I know that I am never truly alone because you are with me. I love and miss you terribly.
With love, Joy

My Truths

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Up. Down. Up. Down. Round and round. I am back on the roller coaster that is my life. I thought that I had gotten the ride to stop and let me off, but now I see it was all an illusion. I have never been off. Minute fluctuations in energy and mood have made me believe what I have wanted to believe anything but the truth. The truth is that I am sick. The truth is that I have little to no support system outside of this blog. And the truth is that it sucks.

Truth number one: I am sick. It has been proven. I have not only surgical reports like before, but now also have photos and video of just how messed up my body really is. I went through the depression that came along with the (visual) proof of the adhesions plus the realization that absolutely nothing can be done to get rid of them. I cried. I pleaded. I screamed. I asked God why. I argued with myself and with my body that this was not going to get me. I told people that I had finally accepted it and I was going to fight through it. I even had an enjoyable Christmas.

But now the truth is sinking in. Yes, I was able to cook for Christmas thanks to the wonderful power of both adrenaline and opiates. I was able to control my shaky, adrenaline flooded body down enough to eat (again thanks to opiates but this time with a side of Ativan). And yes, Christmas Day was a day of rest and napping with no reprieve to my screaming muscles and achy back and pelvis. The sharp, cramp-like pelvic pains are even back. Subconsciously I knew I was doing WAY too much, but mentally I rationalized. Oh, I will have plenty of time to relax after the holidays; and maybe I will. But for now, I am one miserable human being because of it.

Truth number two: I have little to no support system outside of this blog. My one true support is my therapist. I mean really? She gets PAID to listen to me. That can’t count, right? Then there’s M. He listens to me about half of the time and counters what I have to say so that it seems he is belittling my statement. He may not mean to. He may mean (in his own strange way) to try to counter my negativity. But is saying that I’m hurting, that my body is stressed, really being negative? I don’t believe so. I believe that I’m stating a FACT. And trying to get it out verbally to someone hoping they will understand. Well, no such luck.

So I will vent here. The one place in the world where I am heard. Where there are people who understand what I’m going through and don’t push to make me “forget about it” or where the subject isn’t changed. Please understand that I am not being negative. I have begun to heal from the shock of realizing that this is my life now. Everyday I am getting closer to accepting things for how they are. Sometimes, though, I just need to get my feelings out. I need to cry and beg and get angry. I shouldn’t be chastised for that. At least I am not in denial anymore. That means I’m one step closer to accepting this monster that has invaded my body, although true acceptance may take a while to come.

P.S. Update: In the post Rain On Me, I apparently misunderstood what my sister-in-law meant to say. According to M, it is a phrase that means “when it’s not one thing it’s another”. I can handle that. It’s much less condescending than what I believed it to be and I apologize for thinking otherwise.

Merry Christmas (To Us All)

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

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.

Come on, baby, spend Christmas with me!

http://companyforchristmas.wordpress.com/

It’s C4C – Company for Christmas

Company for Christmas is a volunteer fueled mission, created by fabulous blogger RuleofStupid. It is a virtual place for people who, quite simply, don’t have any company on Christmas, and would benefit from a little non-religiously-affiliated,  non-counseling -orientated, conversation.

Read more of this post:  Come on, baby, spend Christmas with me!.

It Was A Flop

I was waiting to post until I knew for sure if the nerve block I had done on Friday was going to work or not. It was a flop. It was very interesting how the procedure went. Normally I am put to sleep when they do a nerve block on me, but this time was different. Instead of going in my back, they went in my lower left pelvic area. It was called an ilioinguinal nerve block. It was meant to ease the pain in the pelvic area.

Image from:  http://nezhat.org

Image from: http://nezhat.org

A part of me knew that it wasn’t going to work as I saw it done. They use ultrasound to find the nerve that runs close to the hip bone. Problem is, my intestines are glued to my abdominal wall by adhesions. The doctor was unable to see the nerve, so he just injected the surrounding area as close to where the nerve is supposed to be as he could. Instead of instant pain relief, it actually hurt worse because he had introduced fluid to an already very tightly filled space.  But, I remained optimistic that it would work within the 24-48hr time frame I had been given.  Not so lucky. When I go back, I hope to discuss one more option that I have found doing my own research. It is called the pudendal nerve. We’ll see what happens. I’ll keep you updated. I will never ever give up hope.

 

The Connection Award

One award that I need to accept today is the Connection Award. It has taken me a while to accept because dealing with awards is quite the chore for me physically (sitting straight up) and mentally (all the open tabs, links, and notifications all going on at once). If it takes me a while to accept your award, please know that it is not for lack of appreciation, but from lack of energy.

This award, the Connection Award, was given to me by Jenn at MyFibrotasticLife.com. Jenn is such a sweetheart and has such a positive outlook on life, that she is truly inspiring to me. We met as followers, moved to a buyer/seller relationship and from there into a friendship. I believe that out of all the awards that I have received, I am most proud of this one since I was the only nominee. A whole post about me. I was surprised and it made quite an impression on my ego! However, I feel that the act of kindness she describes in her nomination post was just something I felt I should do. Nothing special, just me being me and respecting her as a crafter.

This is from the creator of the connection award, http://trynabpainfreemomma.wordpress.com

“After I re-read this post of Jenny’s, I felt connected. I felt I had cried on her shoulder and she was there for me. Sometimes, If you can’t be with some one physically, because they live in another state or country, connecting through real, unbridled blog posts is the next best thing.

So, I am creating this connection award. It’s intent is to give to bloggers when you feel particularly connected to someone through a post or posts they’ve written. The rules are simple. Write a post about how you were feeling and what specific post you read on another’s blog and give them this award, for them to display on their blog. That’s it. The simplest things are often the most meaningful.”

I am nominating Tammy @ Walk With Me On My Journey Of Illness…. I know when she reads this she is going to have a fit because she is receiving ANOTHER award. However, Tammy is the blogger I feel most connected to. My main illness is “pelvic and abdominal adhesions”. It is a problem that a great many people suffer from, but that is rarely diagnosed. Because of that, it can feel quite lonely sometimes that no one understands the unique sense of pain that they cause. Tammy has been diagnosed with other conditions, but the one she is suffering with the most right now is the adhesions. I know this because she and I have not only become friends, but best friends. I mention her frequently because she has just become that big a part of my life. If I had to choose a post that made me feel the most connected to her, it would probably be Adhesions- The Dark Monster Within, however my connection with her runs much deeper than a single post.  I hope she realizes how very much she means to me.

 

Rain On Me

While on Facebook the other day I got a message from my sister-in-law. The message she sent was actually meant for someone else, but since the conversation was started, we continued it. She asked what I was doing and I told her I was in bed. I guess it was around 5:00 or 5:30 p.m. She said (note: this is a general interpretation since the conversation was in another language and some things just don’t translate. In other words, it might sound a little funny), “what, are you still sick?” My answer to her was “More or less. I’m actually better after recovering from a UTI.” Her response to that was “when is it not raining on your head?” I tried to laugh the snide comment off by jokingly saying “I know, right? It’s just one thing after another.” I thought that would be the end of it, but then she says “well, just take them [illnesses] out of your body, don’t let them stay” (basically meaning that I have some control over this…possibly that I’m making it up?) Of course, I’m not going to let that slide, so I responded “I would love that, but the surgeon tried that already. He says it’s too dangerous to remove them [adhesions]”

At the time, the conversation continued so I just let it go. Well, I guess I forgot about it. Until today. This is the same one who said to me before: “well, when you hurt, just tell yourself you’re not hurting and you’ll be ok.” Geez, don’t I wish it was that easy? Obviously she doesn’t understand what’s wrong with me, or maybe she just doesn’t care to. I don’t know and I don’t care. What I do know is that I have gotten to the point that I dread talking to her. I know she’s going to ask how I am and I know that my answer will not be “great!” I will no longer go into detail trying to explain my illness to her, but I won’t pretend that everything is exemplary. I will continue to say “fine” or “more or less”. It’s not that I’m pessimistic, it’s just how things are.

In contrast, I got a message from another sister-in-law a couple of weeks ago. She wanted me to know that she had read my blog and that up until then she hadn’t realized how serious things really are for me. She said that she can only imagine the pain that I deal with on a day to day basis. She commended me for making the 12 hour (which turned into 14 hrs. thanks to the dogs) trip to Michigan in August. She said that she doesn’t travel because of how tiring it is, so the thought that I made the trip in as much pain as I am in just really impressed her.

Her message actually made me cry tears of relief that SOMEBODY in this family. I thanked her for making my day. This difference in what these two family members said to me was astronomical – at least to me it was.

If you’re reading this blog because you too are in pain, then you know exactly what I’m talking about. If you’re reading because you have a loved one in pain and would like to understand them better, then I applaud you. If you’re reading this blog for the hell of it, then do me a favor and google “what not to say to someone with chronic pain” (caregivers you can do this too). You will find plenty of articles about what to and what not to say to someone in chronic pain. Read one and then store that information. When I did it just now, one of the first to pop up with both lists was mdjunction.com (For what NOT to say to someone in chronic pain and for what TO say to someone in chronic pain Check out these links). Like I said, just store that information and keep it with you because you might someday need it. I wish the first sister-in-law cared enough to do the same.  What she doesn’t know is how incredibly strong I am.