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.

Advertisements

Official

image

Today has been a better day than yesterday. Other than the 3 hours I spent at the doctor’s office, all in all it has been a pretty good day. I got to talk to my best friend for a little while, which always makes me feel better, and M- was even nice to me today after he got home. I haven’t hurt quite as bad as I have been, so I am hoping that if I take all day tomorrow to rest, maybe I’ll be over this flare (or bad days) by Saturday so that I can go to church.

Speaking of church, I got a letter today from the priest welcoming me to the church and encouraging me to take part in as many of the “[church] community activities” as I was able to. I am still excited about this. I think that I may have found my place this time and a church family that I can be a part of. I mean, I had already been invited by the office manager (the first friend I made there) to attend the Tuesday dinners and adult Catholicism classes and even the knitting/crochet group that meets every other Monday. But for some reason, having a letter from the priest “officially” welcoming me to the family makes it a little more special. I hate to cut this short, but I want to make sure that this gets published on time so that I don’t miss a day. November is almost over and I am so proud that even on my roughest days I was able to write a little something to share with you all. Even though NaBloPoMo will be over soon, I may just set a new goal to write every day until the end of the year. It feels good to set goals and actually achieve them. I’ve always been told to just take baby steps in my goals, but I guess I shoot a little higher than what should be a baby step. Let’s just add that to the list of things I need to work on 🙂 . Goodnight everyone.

My Day Today II

image

I woke woke up this morning feeling nice.  I got up, and had some fresh ground coffee (I got a bag of Seattle’s Best for $2 on clearance at Wal-Mart, but they were whole beans…either way yay for budget shopping!).  After having my coffee (I usually can’t eat until later) I swept and got the floor ready for my yoga mat, thinking that I would start the day out with some PT stretches.  Why the urge to do my stretches (you say)? Because, the therapist recommended that I get a foam roller.  She said that it would really help with the mayo facial pain…kind of like giving yourself a deep tissue massage.  I had just happened to see foam rollers on clearance at Wal-Mart also, so I figured, what could it hurt.  Me…it hurt me!

I had tried the foam roller for just a second at PT on Thursday, but quickly decided that it would be an activity that I would do in the privacy of my own home in case I cried.

Let me insert something here: if I have never explained the pain sensation associated with stretching out adhesions, let me do it now. My old physical therapist used to do it manually, so I am familiar with the sensation and also know that the pain is to be expected. It is sore the next day, but then later it feels soooo much better. Ok, so there are two types of pain the foam roller causes: mayofacial release (in my case stretching out and loosening up the adhesions) and trigger points. The first feels like a white hot sword is slicing slowly through your body…yeah, not fun. With trigger points, once you hit one, the pain rushes (radiates) from the trigger point all the way down that nerve. So a trigger point in your low back can actually be felt half-way down your leg.

Now I bet you’re wondering why the hell I would do that to myself…it helps. If it weren’t for my last physical therapist, I wouldn’t know that, so muchos thank yous to her. Ok, so this morning I felt that strange, Christmas morning feeling when you want to play with your new toys (which I get no matter what I buy…I don’t know why I’m like that) and this sick in the pit of my stomach feeling because I knew what was coming.

I warmed up with all my usual PT stretches (many are basically modified yoga moves) before even touching the foam roller. I apprehensively grabbed it while I thought to myself “Joy, now I know you are some sort of masochist.” I started out with something easy…my calves and worked my way up. It wasn’t until I got to the trigger points in my buttocks (the ones that tend to affect the sciatic nerve) that I really wanted to cry. I didn’t. I stayed strong. And the funny thing was that the longer I stayed on a place that hurt, the more the pain started to ease away. I ended up so confident in the foam roller that I even used it on my stomach/pelvis where the majority of the adhesions are, especially around the surgical scar. I was so proud of myself!

I also had a little bit of energy left (or the workout gave me the energy…whatever…that I was able to wash some clothes, the dishes, and wipe down the stove and countertop.

Around 2:00 pm I started to get ready for church. I showered and had every intention on wearing dress pants, but it seems that none of them fit, so I ended up having to wear a dress. Everyone was so nice there. I ended up making friends with a little old lady who sat next to me during mass and tried to explain everything that was going on (I’m not Catholic). I was even invited to “fellowship afterwards, which meant coffee and cookies. Something inside told me that this was the church I was supposed to go to. I was nervous at first, but that quickly faded away.

So, that was my day today. I am absolutely exhausted now, and will probably spend tomorrow recuperating, but it was a good day, a day of surprises and of me proving how strong (and strong-willed) I really am. I was proud of myself today for the first time in a very long time.

 

My New Church

image

I found my new church today. It’s called Saint Patrick. I stopped by today to see when their service times were. I ended up staying for close to two hours talking to the office manager. She was wonderful. She took me around to see the building, left a message for the priest about joining the RCIA which is basically a class that teaches you all about the Catholic Church and explains why they do what they do and why they believe what they believe. Classes actually started in September, and then by Easter you are supposed to be prepared for your baptism. She is going to see if it is too late for me to enter these classes. She completely calmed my nerves about going to church with my cushion, and she even gave me my first prayer book so that I can start learning the new prayers. To someone who was raised southern Baptist, the Catholic Church is quite a change, but there are many parts of it that I enjoy. I like the structure of it. I like how very educated every priest is, and I like that it doesn’t matter which Catholic Church you go to, you will learn the same lesson. No worries like the Baptist churches that one church will preach something completely different from the next one. That stability is there and that is what I need in my life right now. I was made to feel very welcomed. Therefore, either on Saturday afternoon or Sunday morning I will be attending Saint Patrick Catholic Church. It was exactly the kind of welcome that I had hoped for.

My heart already has a little more peace in it, knowing that I will be well accepted into this church. That’s always the scariest part…the first visit. That fear was taken from me and smooshed into the ground.

 

My Mother…Still Taking Care of Me

image

I read a post at 5:00 this morning that my new friend Kevin @ osborne2029 wrote about his mom. I had seen the post a couple of days ago, but something told me that it would be a tough read, so I had to wait until I was emotionally stable to read it. It reminded me so much of my own mother and really touched my heart to write about my mother, especially since the realization last night that in order to find understand my new life and love myself again I need to go back to the love my mother showed me.  For that reason (and since December will be the 10th anniversary of her death) I decided that I needed to write a post about my mother.

My mama was widowed one month before I was born, leaving her a single parent to a child she thought she would never have (hence the name Joy).  She was so protective of me at first that I slept in bed with her until I was like 5 or 6 years old and decided that I was ready to sleep in my “big girl bed” (I always had my own room, but I had slept with her since infancy).  I have never in my life known a love as strong as my mother’s love for me.  To say it was unconditional would be an understatement.  I was the “joy” in her life, the light of her eyes, and her proudest accomplishment.  I even remember when she got sick going to the doctors office with her and the doctor telling me that she was glad to finally meet me since apparently, my mother had been bragging about me instead of talking to the doctor about herself.  That is love.

My mama was one of the most patient and soft-spoken people I have ever come across.  She rarely raised her voice, and instead of spankings I would get lectures because she thought that if I understood what I had done wrong I wouldn’t do it again.  Actually, I received exactly 3 spankings my whole life, and she cried for having to do it and I still got the lecture.  As I grew up, I remember actually wishing that she would spank me instead of the lecture because it took less time and hurt me less (I couldn’t stand the thought of doing something to make her not proud of me – of course, I could never do that…she was always proud of me).  Even when I was eighteen and told her about the one time I skipped school to go to the mall in the city with my best friend after she had distinctly told me not to, instead of reprimanding me, she just shook her head and said “Joy, Joy, Joy” and laughed along as I told her about the craziness of the day.  See – unconditional love and immediate forgiveness.  I strive everyday to be more like her.  I do see things about myself that are like her, but she was the perfect single parent – she never drank, never smoked, never dated.  Her whole life revolved around me.  Was that healthy…well I’ll leave that up to the philosophers, but to me she was perfect and I would be proud to be exactly like her.

I was reflecting after reading the post this morning on the life and death of my mother.  I knew that I needed to remember that unconditional love that she felt for me in order for me to find that love for myself again.  Then the thought came to me that if my father was still alive I would still have his love to learn from and WHAM!  I do have a father, actually I have two.  But there are writings about one’s love for me that have been here all along.  I still have my Heavenly Father.  So, I suppose I should start going back to church.  I had stopped going because I could no longer sit on the wood pews and get through a service without being in tears from pain.  I feel my mother showed me that connection because she knew I needed to see it. I NEED to go.  So if I have to carry my ugly cushion to church with me, then I suppose that is exactly what I will do.  If nothing else, it will get me to the point where I don’t care what people think about me carrying a cushion into church (which will help with the accepting myself with a disability part) and I will get to hear stories about how great God’s love for me is (which will remind me that that kind of love didn’t die with my mother like I thought it had).  I had every intention on going to the Saturday evening service, but I fell asleep, so it looks like I will be going to the 9:00 am service.  I usually don’t function that early, but the church is close, so it shouldn’t be too bad.  The hardest part will be getting ready to go and then still feel like going.  I know that He understands if I can’t go, but I really feel moved right now to go…I feel like I NEED to go.  So, it looks like I will be up early (possibly with coffee instead of tea) to go to church (next week I will try not to fall asleep so that I can make the afternoon service…not as many people will see me with a large, ugly cushion on Saturday afternoon as they will on Sunday morning).  Ok, maybe I need to rethink going in the morning…baby steps, Joy.  Baby steps.

Where I Write My Blog

Master of the Female Half Lengths M writingI am actually using one of the NaBloPoMo Prompts today.  I am sorely tired of the heartbreak and crying.  So, without further adieu :

Tuesday, November 5, 2013
Tell us about your writing space. Where do you write your blog posts?

I am going to have to say that 99.9% of the time, my blog posts are written from my bed. I would love nothing more than to be able to sit at a desk like in this picture Portrait of a Lady as the Magdalen however, whenever I sit too long, especially in a hard chair, the pressure builds up in my pelvis and I end up having to change positions every few moments. (To tell the truth, I look like I have ants in my pants…it’s not a pretty sight.)

In my bed, however, I have the cushioning that I need to be able to sit up for longer periods of time. It is easier for me to type on the laptop than the iPad for obvious reasons – the keyboard. Once I get a bluetooth keyboard for my iPad there’ll be no stopping me! I will be able to write while sitting up and also while lounging back (pretty much laying on my back with enough pillows to where I can see what I’m writing) which will double my possible typing time.

image

Since this is a happy post (ok, so I might not be cracking jokes, but I am not crying over someone either, so that automatically by the rules of my blog page make this a happy post (looks like I’m ruling with an iron fist…lol). Ok, so the point of all of that is that someone made a comment about a comment that I made on another page (is your head spinning yet?). I was so touched by this man’s kind words that if you don’t mind (or even if you do) I would like to share some of them with you. The post that I had commented on can be found here.

I have been on your blog and am now following it. So much pain and deep rivers of hurt that out of respect for your privacy I won’t get into here. I found I had to pause many times when reading about your life.

Far be it for me to come and say I have the ideas that will fix everything. Guys are fixers. We see a problem and become frustrated when we can’t solve it.

What I do know is that somehow in ways I don’t know but feel deep in my heart you will use all of these experiences to reach many. I note that you have received the Liebster’s award. As I read your soul-penetrating writing a few thoughts came to my mind I feel led to share.

God has given you a gift to write. The realness and openness of your writing is riveting. When a reader even with as much as I have read and experienced has to take several breaths reading your writing, that’s special. You are most deserving of the Liebster award.

You are a beautiful and intelligent soul, who deserves to have a joyous life. Don’t believe the lies people have said about you. I believed for over 48 years the lies my father and others in my own family told me. I am still healing from the negative programming I received, but I am healing. If I can take that journey with all I’ve experienced it is my hope for you that you will too.

These words of encouragement spoken by a complete stranger were enough to bring me to tears. It still amazes me how the people here on WordPress have a way of supporting each other like no one close to home can do. There are a few things I left out, so again, if you are interested in reading the whole conversation and especially the original post, you can do so here.

Wherever one decides to write, be it at a desk, while traveling, or even in bed, keep supporting your fellow writers, people of WordPress. You never know when those supporting words will be just exactly what the person needs to hear at the time!

 

 

 

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.

Invisible Illness Awareness Week: 30 Things You May Not Know About My Invisible Illness

.IMG_0125_2

1. The illness I live with is chronic pain caused by severe pelvic and abdominal adhesions. I also have migraines and pre-diabetes.

2. I was diagnosed with it in the year 2007 during surgery to remove a cyst, but wasn’t told that the adhesions were the cause of my pain until 2010.

3. But I had symptoms since 2005 after a long hospital stay.

4. The biggest adjustment I’ve had to make is that I have had to quit work and school. I have emotionally had to try to accept that this is forever, even knowing that there are a few specialists that claim to be able to remove the adhesions. My life now consists of staying at home and in bed most of the time. When I leave it is either to go to a doctor’s appointment, physical therapy, or grocery shopping.

5. Most people assume that I am ok because I look ok from the outside. All of the real damage is on the inside…physically and mentally. Sometimes I am asked about my tracheotomy scar that I got during my extended stay in the hospital in 2005 while on life support.

6. The hardest part about mornings is convincing my body to get out of bed and my muscles to relax. Somehow when I sleep I tense up and I end up getting out of bed and walking around like an old arthritic woman for about 5 or 10 minutes.

7. My favorite medical TV show is definitely House. I absolutely loved that show. House was such a jack ass that you couldn’t help but laugh. Also, I loved the way he always figured out what the problem was. I wish it was that way in real life. People go way to long without being diagnosed and some never are. I think that a diagnosis really means a lot especially to the person without one.

8. A gadget I couldn’t live without is my smartphone. It keeps me connected when I want to be but can also easily be ignored when I want.

9. The hardest part about nights are falling asleep and staying asleep. I take my medicine and it makes me sleepy so I go to sleep and then wake up at 2:00 or 3:00am and have a hard time going back to sleep. Or, I fight the medication to stay awake, usually end up loosing the battle and still wake up at 2:00 or 3:00. Then I have to try to go back to sleep again. Or, I win the battle with the medication and am able to stay up later, but then somehow later turns into really late and it is 2:00 or 3:00 before I can fall asleep. What is up with 2:00 and 3:00?

10. Each day I take 16-20 pills & vitamins.

11. Regarding alternative treatments I am currently reading a book on how to meditate and another one on beginners yoga. At this point, you get to where you will try anything just to have a small piece of your old life back.

12. If I had to choose between an invisible illness or visible I would choose: I really hate to say this, but I would choose a visible one. It is so much work trying to explain my pain. Having to explain that because of that pain I am always fatigued. When I do go somewhere I put on my brave face so that no one knows that anything is wrong and as soon as I am alone I break down. It really is a vicious cycle how you have no energy to do anything so then you get stressed about feeling useless or lord forbid you have relationship issues. That stress just makes your pain and fatigue even worse. And forget having no energy but doing it anyway. Forcing your body to do more than it can is a BIG mistake because YOUR BODY WILL MAKE YOU PAY.

13. Regarding working and career: I miss working a lot. I used to be a nail technician so I worked with the public. I was constantly meeting new people and making friends with the ones who returned. Then I decided I had done that long enough and went back to school for a BA in Foreign Languages. My specialty was linguistics and I wanted to be a translator, an interpreter, or an editor for translated books. The pain got so bad that I could barely sit through class, but I did until I had to start taking medication for the pain. That made me so “foggy” that I couldn’t properly do the work. That was when I had to quit school.

14. People would be surprised to know Just how much my dogs have meant to me. Something as simple as a pet can teach you what unconditional love is. My dogs don’t care if I’m hurting or if I’m not. If I’m in a pissy mood or happy. They love me for me. And when I get upset and cry, the one dog comes and tries to lick the tears off my face.

15. The hardest thing to accept about my new reality has been that there is no easy fix. I either have to put years of work into learning how to deal with the pain naturally or I have to find a doctor who will operate to remove the adhesions. That will be hard enough, but then to live through another surgery, especially one so complicated that every doctor I know has turned me away…it almost seems like a fairy tale. I’m not sure it can be done and a lifetime of narcotics and not being completely “here” is not an option.

16. Something I never thought I could do with my illness that I did was go on a 12 hour road trip that turned into 16 hours because we decided to take the dogs. Then spend a week with in-laws trying to pretend that I was ok when I felt like I was dying inside. Then the trip back home. It took me 2-3 days in bed (where the only thing I got up for was to go to the bathroom) in order to recuperate, but I did it! However, I don’t plan to do it again any time soon!

17. The commercials about my illness do not exist yet. Adhesions happens to around 90% of people who have surgery, yet they remain a “secret” that doctors don’t want to talk about. And that’s just surgery. Then you have to add all of the people who have had some kind of infection or damage to the area. Those are usually the ones that go for YEARS suffering without never knowing what is wrong because the only way to diagnose adhesions is with surgery…which will cause more adhesions. Here we go with the wicked cycles again.

18. Something I really miss doing since I was diagnosed is going out dancing. Having a couple of drinks and then dancing the night away. Hahaha…I wouldn’t even be able to sit on a barstool anymore. How sad is that?

19. It was really hard to have to give up my studies. I had promised myself and someone special that when I went back to school I would finish it. Even if I never ended up working in that profession, just to be able to say that I had done it and have the diploma on the wall. Also, it was very hard to give up the thought of having children one day. I so badly wanted to have children, but my body would be unable to do it.

20. A new hobby I have taken up since my diagnosis is BLOGGING. I just recently started, but it has been such a blessing to me to be able to meet other people who are dealing with the same things that I am dealing with. To be able to read their stories and it sound like I’m reading my own. It has become really special to me to be able to connect with real people again after being stuck in the house for so long.

21. If I could have one day of feeling normal again I honestly have no idea what I would do. There are so many things that I WANT to do, places that I WANT to go, that it would be really hard to decide what could be fit into one day. The one thing I would do is pray to whoever will listen to please give me one more day.

22. My illness has taught me not to take things for granted. It is amazing the things that “healthy” people take for granted with their bodies. Digestion for one. Whenever I eat I can almost feel it move completely through my system because of the pulls and tugs and aches along the way.

23. Want to know a secret? One thing people say that gets under my skin is: “Well you know what – I’m tired too. I worked a whole day and I’m tired. So that is no excuse for _____ not being done. I mean, you just lay around here all day. You have plenty of time to do things.” AARRGGHHH! Of course I have plenty of time. I have a whole lifetime to do things, but only if my body decides that it will let me. Or, sometimes I do feel able to do something around the house for example, but I know that I have a doctors appointment or sometimes even two doctors appointments the next day and I am going to need that energy. And the tiredness YOU feel after working all day is nothing compared to the tiredness I feel after dealing with severe pain all day, trips back and forth to the bathroom, washing and folding a couple of loads of clothes, hand washing dishes, cleaning up dog vomit, changing the bedsheets and then taking pain medicine to try to get all of those things done and then it wipes out whatever energy I might have left. Deal with that for a day and then compare your tired to my tired.

24. But I love it when people TRY to understand. They ask me questions because they don’t want to just say “oh, yeah” when they have no idea what disease or disorder I’m talking about. Honestly, they will never fully understand because unless you’ve felt it, there’s no imagining it. But at least when someone truly tries to understand what I deal with I feel validated.

25. My favorite motto, scripture, quote that gets me through tough times is: “God give me the serenity to accept the things I can not change, courage to change the things I can, and the wisdom to know the difference.” It was my mother’s favorite verse. I also love the poem Footsteps. My father enjoyed it. My favorite part is the very end where it says “The Lord replied ‘My precious, precious child, I love you and would never leave you. During your times of trial and suffering, when you see only one set of footprints in the sand, it was then that I carried you.'”

26. When someone is diagnosed I’d like to tell them that as much as it seems like it, they are not alone. There are others out there who understand what they are going through. For years, since adhesions isn’t listed as a disease or a disorder, I thought that it was just me. It was the circumstances that I had been through -no- put myself through that had resulted in me having these weird things inside of me gluing everything together. It wasn’t until I moved to the city that I live in now for school and was trying to find a doctor. Of all places, I found my doctor on a website created by a lady in Australia that was suffering from adhesions. It had profile pages and forums of many, many women who also suffered from the same thing as me. I was shocked. I was even more shocked to see a profile of a lady who lived close to me who recommended this OB/GYN who specializes in pelvic pain. He has been my doctor for three years now. He told me on my first visit that we were going to have a tough ride trying to manage my symptoms, but that however long it took, he would be there with me. And he has been. I thank the Lord every day that I was lucky enough to find a doctor who not only understood what I was going through, but knew I was in pain…admitted that he knew I hurt. I would make sure to tell the person recently diagnosed with ANY type of pelvic pain issue my recommendation for a GREAT doctor.

27. Something that has surprised me about living with an illness is just basically how unrelenting it can be. I can’t believe that it will always be there and it has surprised me how it has affected me emotionally. At times I realize that I am a lot stronger than I thought I was, and other times I just cry and cry like a baby. It has really been a roller coaster ride and I expect that it will continue to be for a while still. There is so much I have to learn about myself and my pain before I will be able to manage it my way.

28. The nicest thing someone did for me when I wasn’t feeling well was cook me a steak. A beautifully seasoned and grilled steak. Even with all my recent dietary restrictions (some things hurt to digest) I was able to eat that steak and not hurt. After a month of turkey sandwiches and sweet bread called Conchas, that steak was a real treat.

UPDATE: After seeing that I felt bad as soon as I woke up but still having to go to the doctor and do a whole day’s worth of running around, M- surprised me with an iPad that afternoon. Do you know how long I have been wanting one of those?

29. I’m involved with Invisible Illness Week because I have an invisible illness and I want to raise awareness. I not only want to raise awareness for my illness, but for all of the people who suffer other invisible illnesses and are not taken seriously because they “don’t look sick.”

30. The fact that you read this list makes me feel: proud to have completed it (and worth the pain of sitting up this long to type everything out). If only one person were to read it, then that would be one person who has a better understanding of what my life is like, and the lives of countless others dealing with the same issues. Oh, and after all this work, it would be nice if you left a comment! 🙂

Clear My Mind?

20130902-020828.jpg

Image from: http://teachmelife.wordpress.com/

I am in the process of reading How to Be Sick by Toni Bernhard. So far, it has motivated me to evaluate my emotions and the way that I see things. On the other hand, the book is inspired by Buddhism and the whole concept of meditation is foreign to me. I have tried before to clear my mind or not think about something. Of course, if you try NOT to think about something, you probably WILL think of whatever it is you’re trying NOT to think about. Perhaps this will all make better since by the time I finish the book, but so far I find myself completely and utterly perplexed. I am reminded of my sister-in-law telling me that if I hurt to just tell myself I don’t hurt. It doesn’t work like that, at least not for me.

As a Christian we are taught to “leave it to God” and he will handle it. That is another concept that has always evaded me. I understand that if you have faith, you should be able to do this, and I am a “believer” but to me it almost seems synonymous to saying ” don’t worry about it now, worry about it later.” I know that I have said on more than one occasion “God, I can’t handle this anymore so I’m leaving it in your hands” but either the situation is still there or it comes back up and you are left to face it. When I hurt, I can pray until I’m blue in the face for the pain to go away, but it doesn’t. I can pray for my life back, or even just a small piece of the life I once had, but I’m still here, still in bed and still hurting.

Image from: http://teachmelife.wordpress.com/

Do any of you have any thoughts on this? I am trying really hard to come to terms with the fact that this is my life now. There is no cure, barely any treatment, and I find myself with tears, now habitually, flowing. I just want to find some peace within myself and I don’t know how to get there. I have heard good things about this book and still have high hopes, but I am afraid that all of this wisdom will be lost on a dummy who can’t control her life, her health, or her emotions, much less her own thoughts.

20130902-020747.jpg