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.

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It’s Time to Battle the Dragon

I have been doubly nominated for the Dragon’s Loyalty Award. The nominations came from two wonderful ladies: Julie, The Nocturnal Laundress
and Jenn @ My Fibrotastic Life.  Both are excellent blogs about Fibromyalgia and how it affects their lives. I highly recommend these blogs, even if you don’t suffer from Fibromyalgia.

The rules to accept this award is as follows:

“The philosophy of the award is: The Dragon’s Loyalty Award is an award for the loyal fan/commenter, whether the recipient is a fellow blogger or just someone who follows and comments regularly”.

There are some rules that one must follow in order to fully accept the award and they are as follows:

1. Firstly, display the Award on your site. You earned it and you deserve it!

2. Link back to the person who gave you the award in your acceptance post;

3. Nominate 15 well deserving bloggers for the Award and let them know the wonderful news by sending them a message on their site;

4. List 7 interesting facts about yourself”

Ok, so here goes, 7 interesting facts about me:

1) I love to sing. I was in choir in Junior and Senior High School. At that time I could sing really well, but that was before the tracheotomy. I still love to sing and when I feel like singing I sing…if you don’t like it, don’t listen!

2) My first job was as a nail technician. I interned until I completed the necessary hours to get my license, then I worked doing nails. I got as far as Master Manicurist in my almost 8 years at this job.

3) one of my favorite channels is the Food Network Channel. I love cooking when I’m able to do so.

4) I rarely wear blue jeans anymore. I’m usually in Yoga, pajama, or sweat pants.

5) When I do dress up, my favorite pair of shoes is a pair of leopard-print heels. My second favorite pair are lime green heels.

6) My middle name is Elizabeth. I was named Elizabeth after my grandmother.

7) I married my first husband at 19. Yes…young and stupid…enough said. One positive thing I got out of my first marriage: Gastric Bypass surgery.

As far as nominees go, I don’t believe I can come up with 15, especially not counting these two beautiful ladies. I could only come up with 9.

1) Tammy : http://tlohuis.wordpress.com
2) Emily: http://painfulhilarity.wordpress.com
3) Richard: http://iamawakenowtvm.com
4) Tami: http://tjgypsyhippie.wordpress.com
5) Inga: http://ingaflaherty.wordpress.com
6) Dawn: http://dawnyhosking.wordpress.com
7) Leslie: http://justanotherfbomb.wordpress.com
8) Joy?: http://pricelessjoy.co
9) Eddie: http://bishoptatro.wordpress.com

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My Day Today II

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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 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!

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! 🙂