Time for Joy

I have had a great couple of days. The pain is finally gone from weeks past and I am left with my everyday pain. What does that mean? It means that for the past 3 days I have been able to do my yoga/PT stretches. Yesterday I was SO SORE! However it has worn off some today and I am left with the good feeling that exercise brings. I have dedicated a whole hour each day to ME. 30 minutes with my stretches and another 30 minutes (to cool down) using a guided meditation or guided yoga nidra. They are basically the same thing. The point is that I haven’t been able to be out of bed for an hour in 3 weeks! This is huge!

I’ve noticed that once my pain levels subside, my mood improves (well who’s wouldn’t, right?) and I am able to see the blessings in my life more clearly. I have gone from a 9/10 pain level to a 7/10 (when I’m sore, but soreness is so much different than PAIN) to a 6/10 baseline.  I’m hoping that the more my muscles loosen up with the stretches that number will continue to go down. The lowest I’ve been since the adhesion pain reared it’s ugly head has been a 4/10. Oh, would I ever welcome that number again! Another benefit to working out: I have been sleeping better. So what if that sleep came during the day or while talking to a friend (sorry Tammy!) the point is that I have gotten some much needed rest.

I have another nerve block planned for the 20th.  Wow, I just realized that’s this Friday.  I am “hoping and praying and wishing and dreaming” (what was the name of that song?) that this nerve block finally works. You know the saying that God never gives you more than you can handle? Well, this would be a good time for him  to discretely intervene. If I understood the nurse practitioner at the pain clinic correctly, there are very few places left where they can try to do nerve blocks (if any at all), so I’m kinda counting on this one.

For those of you who have been wondering how things at home are doing (or I guess I should say if you are wondering what happened after that night), I’m thinking about writing a password protected post so that I may write freely on the subject but don’t risk the wrong people reading it. I have been able to tell a few of you because we have contact outside of WordPress, but I know that there were others who prayed for me and were there for me who might be interested. If you are, could you just comment below and/or email me with your email address so that I can send you the password once it’s done.

Scarf Update:  I have finally finished the scarf I was working on.  Once I get it washed with softener I will take another picture. I have since started a new one. This one I’m doing differently. It is a double crochet whereas the first one was a single crochet. Actually, I haven’t decided if it is going to be a scarf or a throw. I made it plenty long (or wide) just in case.

My Day Today

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Well, I had a semi-productive day today.  I got up (notice I didn’t say wake up- I had been up most of the night…damn stress!) and made a cup of tea. Why is a southern girl having hot tea in the morning instead of coffee?  Hell if I know other than the fact that I found that I really like it.  Don’t get me wrong, I still LOVE a glass of cold sweet tea, but I also love a mug of hot black tea in the morning.  I have found that the Irish breakfast tea is a little stronger than the English breakfast tea, so it holds up better to my cream and sugar (you didn’t really think that was going to change, did you?) So, after my cup of tea and Concha (which is a Mexican sweet bread) I read a few posts and then decided that I needed to do something before going to the doctor (for trigger point injections).

So, I swept the floor, put down my yoga mat, and did my physical therapy exercises.  As a matter of fact, most of the exercises I do for physical therapy are modified yoga moves (who knew?).  Anyway, I had read about this yoga called Yoga Nidra.  It’s supposed to be like sleeping while awake…ok I know that made no sense at all.  Ok, you are supposed to be so relaxed during the session that it is as if you had gotten a couple of good hours of sleep (which I desperately need) but you do it while completely conscious.  I just had to try it.

So I googled Yoga Nidra (don’t you just love the way that Google has now become a verb…along with Twitter’s tweet…sorry, linguistics interest me :)) and I found a great video on You Tube (you can see it here) where the lady talks you through it. Se had a soft, sweet voice and there wasn’t a bunch of noise in the background like you get a lot with You Tube videos.  At the end, they even pointed out a link where you could download the mp3 of what you had just listened to.  I love free stuff. 🙂  Anyway, except for the fact that I was on a thin yoga mat on a hardwood floor and had nothing to put under my knees to take the pressure off of my lower back, it really helped to relax me.  I got up, rolled up my mat and put everything away, resumed my usual place on the bed and… fell asleep until just before my doctors appointment.  I’m so doing it again tonight to see if it helps.  I know it will probably help me go to sleep, but I don’t know about staying asleep…we’ll have to see about that one.

So, I woke up and raced around getting dressed to go to the doctor.  I have had trigger point injections many times in my lower back and pelvis, but never in my shoulder blades.  It was totally different.  Usually, the doctor pokes around until he hits a trigger point and then he marks it.  After he gets them all, he starts the injections. This doctor (this was at the pain clinic) explained that the trigger points in your shoulder blades are usually all in the same spots, so he used ultrasound and to see when he hit a trigger point, the muscle around it twitches, so he knows he’s in the right spot.  The other difference was that my other doctor (pelvic pain specialist) always puts a hot pack on where he has just injected and the pain clinic didn’t.  That meant that when I got got I went straight for the heat pack and the microwave.

I used the heat pack for about an hour and then I used this gel I bought at the physical therapist’s office called Biofreeze.  It works wonders for sore muscles, so I lathered it on.  I’m still a little sore, but hoping that it will have resolved itself by tomorrow (they usually do).

And so, that has been my day so far.  Of course, I have at least another 30-45 minutes on here reading posts that I follow and answering comments…spending time with my “WordPress family”.  After that I may make myself another cup of tea (I’m thinking chai or chamomile) to get ready for bed.  I hope your days have all been “joyful” (hahaha).  Ok, I hope that your days have been low-pain and if not, that they will be tomorrow!

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.

 

That’s a big job…who says I don’t work?

I went for my two-week post-op appointment yesterday.  The doctor walked into the room shaking his head.  He was still amazed at the extent of the adhesions.  I asked if I have what they considered a “frozen abdomen” (already knowing the answer) and he said “no, honey, yours is more like “Ice Age abdomen” with a big nervous smile on his face.  I am convinced that he still can’t believe that we made it through surgery without any serious complications.  It probably had something to do with Dr. L telling him he was a crazy SOB for even trying to operate on me…who knows?  Have I mentioned I love my doctor?  Who else could tell you ‘no, it’s much, much, much worse than that’ in such a nice way?  He makes me laugh.

So while I was there we discussed the Mayo Clinic’s Pain Rehabilitation Program. I told him that I was looking at my options of whether or not to try the “übersurgeons” otherwise known as specialists in adhesion removal (but ‘übersurgeon’ is so much more fun to say :)) or whether to manage the pain.  Pain management can be broken down into two categories: narcotics or sans narcotics.

So far (going on 3 years now) the “pain management” route hasn’t quite been cutting it for me.  I have done physical therapy (which actually does help a little (a very little) with the pain but improves my strength and improves my fatigue (meaning that I can do more than take a shower before I feel like I’m gonna pass out from exhaustion).  My first nerve block actually had nothing to do with my adhesions.  A week before my first appointment with the pain management doctor I broke my butt.  I know you’re supposed to say tailbone but screw tailbone.  Your butt is completely useless.  I mean, the most common thing I do with my butt is SIT ON IT and that is completely impossible without excruciating pain until it heals or you have medical intervention in the form of a nerve block.  That particular block worked like a dream!  By the time I woke up from sedation I was sitting up (still don’t know how the nurses managed that one, but ok) and was automatically like “wow, M-, I’m not hurting” and then I tried to stand up and sit back down to check, but someone grabbed me (I don’t remember who…geez I had just woke up) and told me it might not be a good idea to stand up yet…and they were right.  However, when I fell back into the chair (which should have hurt like hell) nothing hurt.  Complete success.  My second procedure was a SI joint injection.  Did it work? Nope.  The third was a hydrogastric plexus block.  It helped for about a month.  I had more energy and was more active in that month than I have been in years. I definitely wasn’t 100% but I have never asked for 100%…I just want a piece of my old life back and that was the closest I have come so far.  The fourth was another HGP block and I got maybe two weeks out of it, but it wasn’t like with the first one.  It didn’t reduce the pain as much.  The fifth was a radio frequency (RF) treatment where they “shock” the nerves.  They claimed I would get 6 months pain relief with that one…never happened.  Not one day.  I have also of course tried the pregabalin and other non narcotic pain relievers and of course the narcotics.  I have a love/hate relationship with them.  I love that they take the edge off of the pain, I hate the “fuzzy” “not quite there” confused feeling they cause as a side effect.

So, looking for sans narcotics options, well there aren’t many.  But the one that I have found and have talked to one of their “graduates” and seems to have a very high success rate is the Pain Rehabilitation Program at the Mayo Clinic.  Basically, they “take a behavioral therapy approach” in teaching you how to cope with your pain.  Some of the components of what they teach is: relaxation techniques including mindfulness; physical therapy (exercise); occupational therapy; nutrition; biofeedback practices; and psychological counseling.  They also review your medications and if possible ween you off of or reduce your narcotics.  This would be a good thing to try because I have always said “if I could just have a piece of my life back” and giving me a clear head and fully functioning mind seems like a damn good place to start.  Well, you have to start somewhere.

Meanwhile, back at the doctor’s office, after a quick check, I was cleared to go ahead with my knee surgery ( Yay! Fun!  Can you hear the sarcasm?)  Seriously, though I am not worried about knee surgery a bit.  Piece of cake.  I also had the doctor talk to M- a little bit about chronic pain and the fatigue that tends to accompany it.  Oh, and also touch on the fact that I AM NOT A DRUG ADDICT!  I may be medically dependent, but there is a HUGE difference between that and addiction one key component being I DON’T GET HIGH OFF MY PAIN MEDS!  Does it seem that I am a little sensitive on this topic?  Well hell yes I am.  I don’t want to be taking the shit in the first place, so don’t turn around and insult me by saying the above statements.  Anyway, they talked.  When M- brought up the ever-popular statement “well I’m tired when I get home from work too” the doctor told him he was trying to compare apples to oranges.  He said ‘it’s not like Joy is looking for a ‘free ride’ or is being lazy. Chronic pain sucks your energy away. It eats at your emotions and affects you deep into your soul. It doesn’t matter if it is headaches or pelvic pain or back pain. You do tire faster and you do have to learn how to conserve energy.  Even just taking a shower can exhaust you.  The medication she takes does have side effects but doesn’t make her what you know as high.  It is just so that Joy can get up in the morning and not suffer all day. It doesn’t give her energy. She has to learn to work with what she has.’ (I didn’t use complete quotation marks because that is what he said to the best of my memory, possibly not in the correct order.  I mean, I didn’t go in there with a tape recorder or anything…hey I probably should have done that so that I could play it each time M- slips and says the wrong thing…nah.) Anyway after my doctor was so generous to take up clinic time to play couples counselor, M-and I still can’t talk about pain without him trying to compare it to his own pain or his pain tolerance being better than mine or ….  He claims that he did however get the part about the fatigue.

Geez.  I guess it really is all about what you want to believe.  And he can believe whatever he wants.  As long as he doesn’t say things that bother me and therefore get in my way.  I have too much to do right now.  I have to figure out how to live the rest of my life in the best way, most healthiest (yes I know you’re not supposed to use most and -est together but I want YOU to get my point!) way, and with the least amount of suffering possible.  That’s a big job…who says I don’t work?

 

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

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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! 🙂

Perseverance or Hard-Headedness?

So far, today has been a good day.  Actually, my day got better yesterday afternoon and has been nice since.  Just in case you’re wondering, I do forgive, but it takes me a while to forget.  In my opinion, forgiveness isn’t complete until the apology is proven.  It’s easy to say you’re sorry.  The hard part is proving it and regaining trust.

I got to sleep late today (of course late in this house is 9:00 max because of the dogs) which turned out to be 8:30.  Not bad.  This morning has gone by quickly, however, and I am just now getting settled into “my time”.  I figured I would type out a quick post and then get back to reading.  I decided that before I try anymore “worksheets” I will just finish reading the book Love What Is by Byron Katie.  I figure the book will probably answer any questions that might arise while doing The Work so why stress about something that is supposed to be relieving my stress.  I also decided that reading 3 books at one is kinda dumb.  Once I finish this one, if I feel better I will go forward with the one on yoga.  If I still don’t think I’m ready for that one yet, then I will start on the next book about meditation.  Sooner or later I am going to figure this out.  I am a smart woman (well, I was a smart kid and did well in college) and should be able to get this.  It’s just all the medications that make me so fuzzy headed sometimes I have to read a sentence 3 times to understand it.  Sometimes it’s not that bad.  I suppose it depends on other factors like fatigue and pain level at the time, but whatever.  My point is if it takes me until I’m 60, one day I will get all this other junk in my head to shut up and I will be able to meditate to relax and relieve some of this pain.  So, it is considered perseverance or hard-headedness?  lol  I guess it just depends on your point of view.  From my point of view at this moment with these frustrations that I live with daily, I’m leaning more toward hard-headedness.

Anyway, the black cloud from yesterday has passed and I am back in “preparing for a better me” mood.  I hope everyone enjoys their Sundays.  I don’t know about other places but here in Alabama the sun is shining (and it’s one of those days you’d rather it not) and the high today is 90.  Way too hot.Those of you who have access to water go immediately!  Enjoy the summer while it’s still here.

Here We Go Again

Well, it’s been over a week now since my surgery.  Most of the “surgery pains” are gone or decreased and I am back to my old familiar pains.  At this moment I am right back on the emotional/physical pain roller coaster.  You all remember me saying how great M- was before surgery and even afterwards for that matter.  I thought he had finally understood, especially seeing the pictures and hearing the explanation from the doctor. But, at a little over a week later, all has gone to hell.

At first I handled the news that “nothing could be done” like a true champ.  Part of me knew it anyway, but hearing it confirmed is different.  Instead of getting upset, I went on some “I can do this” crusade.  I bought books on meditation, on yoga, and a book that was supposed to help me handle “my thoughts”.  It called Loving What Is by an author named Byron Katie who is known for “The Work” or “inquiry”.  Basically what “The Work” does is take the thoughts that cause you stress and make you see them differently to a point where they no longer cause you stress.  She has been interviewed by Oprah Winfrey and has at least 4 books under her belt not to mention numerous conferences all over the country where she teaches people how to do “The Work” for themselves.  The idea is pretty simple to have been so successful.  You take the negative (or bothersome) thought, ask yourself four questions and then do a turnaround of the original thought.  It  supposedly has helped thousands of people suffering from depression and other such ailments.  So I read the book up to the part where you are supposed to fill out your first sheet of thoughts.  I read one meditation book completely and read one yoga book to the point where it began to explain the exercises.  I still can not get my mind to shut up long enough to meditate, I don’t feel well enough to do any yoga stretches, and I fill out my first worksheet.  Then I freeze.  Why did I freeze?  Because it all of a sudden hits me that I am going to be in incurable pain for the rest of my life.  That’s why.  I freeze because 4 days ago M-‘s brother comes to stay with us to help M- at work and along with the brother came the old attitude.  Long gone are the days of him worrying whether I am able to eat or not much less cooking for me.  Now, I am supposed to do my “job” and have lunch cooked for them when they come home midday.  I am supposed to have the floors swept daily because we don’t have an extra bed and brother is sleeping on a palate of blankets on the floor.  Wash dishes because there are now 3 of us, and oh, not to mention folding about 6 loads of clothes that M- washed and never folded.  So, I do these things and day before yesterday just passed out.  I was so exhausted I didn’t even take my midday pain medication- I just passed out.  Well, when they got home to eat lunch I tried to get up to sit with them, but every muscle in my body told me no, so I just went back to sleep.  Later that evening, I get a lecture on how I looked like some crazy lady all high and passed out half sitting up in bed with my glasses crooked on my face.  I’m like WHAT?  I did what you asked me to, something that I’m not sure if I’m supposed to be doing yet because I haven’t gone back for my post-op appointment, and I get a lecture about being high and how embarrassed he was that his brother saw me like that.  I mean what the hell?  The argument continued outside and he started to halfway tell his brother what the problem was.  So I’m like nope, you opened Pandora’s box now I’ll just tell him the truth.  So I told him what M- was mad about.  He said that yes, he saw me lying quite uncomfortably on the bed but that he knows that I’m sick and what’s the big deal.  EXACTLY!  I told M- that if he had a problem with the way that I lie down that was his problem, not mine.  I have no control over the position that my body moves it’s way into while I’m asleep.  And as far as his “high” statement was concerned, I hadn’t even taken the medication in question.  Of course, seeing that his brother was on my side (and considering the fact that they were both already drunk – they came home that way) he kept apologizing and trying to kiss me and telling his brother that he had the best girl in the world.  Bullshit.  Fast forward to last night.  Again, they come home with a 24 count of beer and choose to spend the evening outside grilling.  I went outside (because that is the only way that I could talk to him.)  I wanted to show him a couple of things and talk to him for a minute.  It would have taken 5 minutes.  But oh no, he was WAY too tired to talk to me.  He just wanted to relax for a while and we would talk in the morning.  Well, the pair of idiots decided to stay up until 5:00 this morning.  He obviously wasn’t too tired to talk to his brother now was he? Once, at 3:00 am (I was already asleep) he brings the dogs in.  The dogs didn’t want to be inside with me, they wanted to be outside where the food was.  So they cried and whined and licked my face until I woke up (and was not too happy to have been woken up).  I took the dogs back outside to him, told him what time it was and went back to sleep.  So, then I get woken up again at 5:00 am when the pair of idiots come stumbling in the house because he wanted me to set the alarm clock to 7:30 am so that he could be at work at 8:00am.  I somehow fell back asleep until 6:00.  I went ahead and got up, fixed a cup of tea and something for them to eat for breakfast because I knew he wouldn’t have time to fix it himself.  I woke him up at 7:30  and again at 7:35 when I realized he had gone back to sleep.  That time he told me he just needed 10 more minutes.  So I woke him at 7:45 just to be reprimanded for not getting him up at 7:30 like he had asked.  I told him there was food made (which of course he didn’t want).  He left to go pick up some tools and said he would be back in an hour for his brother.  By some miracle I fell back asleep just to be woken up by him AGAIN wanting me to look at how cute the dog was while he played with him.  I snapped.  I was like you woke me up AGAIN just to look at the dog.  I realized that I did snap at him, but I didn’t mean too.  It had just been too much.  Not to mention that if I got 1/4 of the attention that my dog Jefferson gets from him I might be a happier person.  So I tried to apologize to him for snapping and he pulls this whole pity party now-you’ve-ruined-my-morning shit.  He thinks that he can say whatever he wants and get away with it, but I have to be some perfect “housewife” on top of my chronic pain and illness especially while his brother’s here.  Oh, and his brother’s girlfriend is coming next week.  I can’t do it!  So of course, now that he upset me (and doesn’t give a damn that he did so) now I have all these messed up thoughts about the way the rest of my life is going to go.  As much as I try to think positively, I just keep getting knocked back down.  My greatest fear is that one day I won’t have the strength to find that positivity in me anymore.  It will be gone. The sad part is that my patience has always been my best quality. And I am running out of it FAST! I am so sorry to all you readers that I promised more positive posts to.  I just don’t have much positivity left in me right now.  And I wouldn’t have written this one if I didn’t think that somehow this blog is therapeutic.  I just feel so vulnerable and helpless right now.

Grateful For the Small Things

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Image from: http://www.unyimeivymusings.com/2013/08/sweat-small-stuff.html?m=1

I have learned, during a very short period of time, to be grateful for the small things. My surgery went well (meaning I didn’t die) lol. No, really, The doctor was unable to remove any of the adhesions (bad thing) but he took lots of pictures and a video of what it looks like in there (good thing). By not removing any adhesions my pain level will not change (bad thing) however, by not removing any adhesions, or even by not making a second cut, the risk for further complications was avoided (good thing). I think you get the point. the doctor was unable to remove any adhesions because it was simply just too bad in there. Everywhere (except the one place he cut-tell me our prayer didn’t work)had bowel glued to the abdominal wall by adhesions. The majority of the adhesions weren’t “bands of tissue” like the internet explains. Don’t get me wrong , I had some of those and they were pretty ugly ones, but the majority of them were like “sheets”. It was like my insides are draped in white sheets made of adhesions that keep them from moving…No, that imagery is all wrong. Have any of you seen the move “Arachnaphobia” (yes I know it’s old). If you haven’t, think of some movie you’ve seen where there are super-powered spiders trying to take over the house (or town, or whatever). So you remember in that movie how the webs were woven so thickly and so strong (and so big) that a person could run right towards it thinking they can break through but they end up bouncing back and landing on their butt. Then there are the scenes where people are wrapped up in these webs. You can still barely see them behind the white of the web and the only thing they can move is their eyes because they are wound up so tight? Yeah, that’s what my insides are like. And for those of you who don’t do spider movies (Come on, “Arachnaphobia” is STILL one of those movies I could watch anytime- I’ve probably seen it 15 or 20 times over my lifetime) then we could use the more medical imagery of everything being covered by sheets of ice, hence the term “frozen abdomen”.

So, now that we know that I have a “frozen abdomen” what does that mean? Well, for the most part no surgeon in his right mind is going to touch me unless it’s for some life-saving procedure like a bowel obstruction. Oh yeah, I forgot to tell you guys that the surgeon who bowed out of repairing my hernia “because it was more dangerous to me to have it repaired now than to repair it if/when it becomes blocked later on down the road” actually spoke to my doctor (the one who did the surgery) and told him he was damn crazy for trying in the first place. That the only way he would touch me is if it is a life or death situation. Nice. I have now officially been blackballed by the surgical community at large. Does that upset me? A little. What I do know is that if the day ever comes when my bowels or especially that hernia get obstructed and Dr. L comes waltzing in the room saying that he is going to save my life I am going to look him straight in the face and tell him that it’s too damn late. He could have fixed it before it became a problem but no, now I would rather wait for however long in excruciating pain for another surgeon to fix it. A surgeon who cares about his patients and doesn’t blow them off like countless other doctors have done. Let’s see how the super-doctor swallows that pill, huh?

Ok, I feel some anger issues here, so let’s talk about my other options for what the heck I’m supposed to do now. I can go on an internet search for what I call the übersurgeons (the ones who specialize in adhesion removal) send them all copies of my medical records and wait for one of them to bite. Assuming one does, then I would find out what insurances they take, move to their state of operation and acquire said supplementary insurance so that the surgery is paid for. Or, I could drop the supplementary insurance I have now, allow Medicare to pay, and then be responsible for the other 20%, which I am assuming on a surgery that massive would be at least $20,000 which I, my dear friends, do not have (so I guess that option’s out). Or, I could learn to live with the pain and take each day as it comes. Whoa- did I just say that? Yes, I told you at the beginning that I have learned to be grateful for the small stuff. Why would I want to move away from what little family I have and all that I have ever known to have a surgery that everyone is telling me could very well kill me. I have a life here (uncomfortable and lonely as it can sometimes be) but it’s mine. I would rather look for other ways to deal with all of this stuff before putting myself on the butcher block again. There are tons of things I haven’t tried; and until I try all of them I don’t intend to make any drastic moves. There is meditation and yoga. I know that my mind is never quiet even for a nano second but that can change. I have already acquired a book or two on the subject and intend to teach myself the art of meditation to temporarily relieve myself of the pain and to relax enough that it might not hurt as bad anyway. I intend to teach myself yoga, which is basically stretches, the same thing my physical therapist always wanted me to do anyway. There is occupational therapy that can teach me, well, I guess how to clean my house more efficiently so that I don’t make myself hurt anymore than I already do, which is why quite honestly I tend to clean house as little as possible. For you see, if I clean, then I hurt. If I hurt, I don’t clean. If it’s not clean, I’m not happy, M’s not happy and usually starts to bitch about me being here all day and the house is still a mess which stresses me out, which makes me hurt more…starting to see the cycle here? Also, there is something called biofeedback which I don’t really understand completely yet, but from what I do understand is that when you hurt in one area, you unconsciously over-correct somewhere else and then you hurt there. They teach you how not to do that. Lastly is hypnotherapy. Part of me is still a skeptic about this one, but hey, there’s no reason I couldn’t try. Hahaha I guess that gives whole new meaning to my sister-in-law telling me that when I hurt to just tell myself that I don’t. Someone else will be telling me that I don’t hurt and it will be up to my subconscious whether to believe it or not. Sorry, it just struck me as funny. Basically what I want to do with all of this is to get to a point where I can quit taking the pain medicine. Why you ask? I’m sick. I can’t change that. I have no control over when my body gives me a good day or a bad day (except for when I do too much and then I am just asking for a bad day). So, if I have no control over my body I want to have control over my mind. The whole reason I had to quit school in the first place was because the pain medication left me so “foggy-headed”. If I can get the fog to go away there’s no telling what I could accomplish. But as I am now, sometimes even the simplest statements I have to ask to be repeated if I am not paying complete attention. I hate how the medication makes me feel even as it’s taking the edge off of the pain. This is really the deciding factor for me here, guys. If I can survive without medication then I will survive. If not, I will have to go under the knife one more time. I just pray that God helps me to find the right surgeon for the enormous task at hand at the right price (free). That’s a pretty tall order, but something has to give. I want my life back. At 32 I am way too young to lay wasting away in bed all day every day. I get excited when I am able to wash a couple loads of clothes and wash dishes. Sometimes I can sweep the floors, but what about mopping them? What about washing the windows and dusting and cleaning the bathroom and just being able to move around enough to de-clutter? These are things that get overlooked because by the time I was dishes and wash clothes, maybe sweep the floor I am completely and utterly exhausted and the rest gets put on hold for the day I can do it. I’m tired of waiting. I am ready to cook again. Forget sandwiches. I want to be able to cook a meal, one made completely from scratch the way it’s supposed to be done. I love to cook. The times I am able to cook I’m either hurting too bad to eat or am in tears afterwards. I just have to get my body to agree to let me do it. I’m tired of my body being in charge. I’m ready to take control back and if it takes someone or a team of people to teach me how to do that, well I guess I better start looking for them. I at least had better start reading my books!