Another Friendship Lost…

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

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

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

She wrote me back today

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

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

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

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

 

My Awards Ceremony Continues…

Well, obviously I had to break them down into two posts, but I am proud to have been able to accept four awards in one day (well, two if you count my homework…writing questions, picking new nominees).  I just wish I had gotten to get all dressed up or something 😉 …I am having a good day today. I guess that’s what counts.  Besides, when I feel great and decide to get all dressed up for one reason or another, these posts can always be updated with pictures.  🙂

Speaking of pictures, I was terrified to put a photo to my blog at the beginning because it was supposed to be an anonymous blog. Of course we have been through that subject and I am slowly starting to share my illness with the world. I had a couple of friends on Facebook that just said ‘oh, so that’s why you’ve been hiding away from us’…and it was. Who wants to ‘shop talk’ bodily functions? I mean really?   But, that is exactly what I have found here on WordPress. I have found people who COMPLETELY understand what I’m going through when NO ONE in my real life understands (except maybe doctors, but they don’t count). I have met a new group of people who are not only willing to listen to me but who understand what I am going through and don’t judge me. That is why this first award means so much to me.  I was nominated for this award by Tammy @ Walk with me on my journey of illness to the road of happiness and a life of fulfillment.   She has truly become one of my family.  We talk every day by email (health permitting) and usually during the weekend or if something really important has happened during the week, we speak by phone.  She has become my best friend.  And as much of a wildcat as she is, surprisingly I am not too far behind.  She is my “adhesion sister”, and I love her. We can somehow gently glide from “shop talk” to family issues to what we had for dinner…she is so easy to talk to and, like I said, my best friend.

She is not the only one that I have found myself talking “touchy subjects” with.  These illnesses have brought us all together on this site and made us a family.  A family of “misunderstood”  and often (emotionally) hurting people who benefit from having others who truly “get” what they’re saying.

More information about this award can be found on this page here.  The rules are simple:

1. Display the award logo on your blog.
2. Link back to the person who nominated you.
3. Nominate 10 others you see as having an impact on your wordpress experience and family
4. Let your 10 Family members know you have awarded them
5. That is it. Just please pick 10 people that have taken you as a friend, and spread the love.

In honor of receiving the ‘I Am Part of the WordPress Family Award’, I am finally going to link my Facebook page to my blog.  You will all be able to know more about who I am (although I’m warning you I’m not on Facebook that much) but since you have become my family, I will share those things with you same as I do my own family.

(Update: Facebook won’t let me share my ‘regular’ page..it has to be a fan page or something.  So, you should be able to find me at http://facebook.com/joy.streetman.  please mention your WordPress “name” so that I will know who you are. If you find that this link doesn’t work, please let me know so that I can figure out why!)

So, without further ado, ten other people who have made me feel completely at home here from day one would be the following people:

1.  I Am Awake Now Thank You VERY MUCH

2.  Spicyt’s Blog

3.   MySexyEndo

4.  Ememelle

5.  Living Bendy

6. The Never Ending Headache

7.  The Nocternal Laundress

8.  Midnightdemons7

9.  Painful Hilarity

10.  PEACE. PURPOSE. PONDERING.

 

Next…

I hate to put this in the same post, but guys, it has been a VERY long day.  The last award that I have been nominated for is The Versatile Blogger Award.  This was also given to me  by Ms. Tammy @Walk with me on my journey of illness to the road of happiness and a life of fulfillment.

The rules for this one are as follows:

1. Display the Award on your Blog.
2. Announce your win with a post and thank the Blogger who nominated you.
3. Present 15 deserving Bloggers with the Award.
4. Link your nominees in the post and let them know of their nomination with a comment.
5. Post 7 interesting things about yourself

So, I suppose I will start with the 7 interesting things about myself.

1)  I love the color pink.  October is one of my favorite months because the weather is just starting to cool down in Alabama and I have the best excuse EVER (Breast Cancer Awareness Month) to wear as much pink as I want to and not look childish.  Oh, and they light up the courthouse with pink lightbulbs also.  Pretty cool.

2)  I love the Rocky (Smoky) Mountains.  As a child, we used to take all of our vacations there with the end point being Pigeon Forge, Tennessee.  We always drove through the mountains just to look at their beauty.

3)  I love Dolly Parton.  Ok, I know that sounded a little strange, but she has a theme park in Pigeon Forge, Tennessee called Dollywood.  Besides learning about “the good old days”, listening to some of the best gospel music you’ll ever hear, and riding the rides, I met Dolly Parton on a couple of occasions.  She was always quick to give a hug and get her picture made with you.  I also love the sound of her voice.  A lot of people aren’t as fond of her voice as I am, but I love it. I remember having a friend in school, and one of the first things we found we had in common was being Dolly Parton fans (which was just not ‘cool’ at the time. Oh yeah, instant friends.

4)  I am a total foodie.  I love to cook and if I had unlimited means, would probably have a professional kitchen put in my house.  Cooking relaxes me and the food at the end isn’t too bad either 🙂  It’s one of the things that I miss the most right now and one that is high on my list of priorities as far as getting better goes.  I want to be able to cook a full meal again.  I am hoping that by Thanksgiving or Christmas I will be able to cook the meal without having to lie down to rest afterwards or being in so much pain that I’m nauseated and can’t  enjoy the food with everyone else.

5) My mother was my best friend growing up (yes, I had other best friends too, geez).  What I mean is that we were very close.  This December 27 will be the 10th anniversary of her death.  I expect it will be pretty hard on me.  I would like to be able to do something special to celebrate.  I just haven’t decided what. (Any suggestions? Remember I’m on a limited budget.)

6)  I was always an overweight child.  Obesity runs in my family, so at 18 1/2 years old I had gastric bypass surgery.  I did really, really well with it (maybe because I was so young).  I weighed 299 the day of surgery and my normal weight now is 150.  At the moment I am a little over at 160, but I am still happy.  The reason it worked for me was because I was mentally prepared for it.  I knew it wasn’t an easy fix and that it would change my life forever.  I think that is why so many GB surgeries fail.  The patient isn’t prepared for the physical or emotional changes that come with gastric bypass surgery.  They think it is a quick fix and then they will be thin and life will be perfect…it’s nothing like that.

7) Last but not least…I know this sort of hits on number 3, but I am a diehard country music fan.  I grew up listening to the greats like Tammy Wynette, Patsy Cline, and the Oak Ridge Boys.  I still love country music.  Boy has it changed, but no other music can tell a story, or touch your soul, the way country music can.  That doesn’t mean that I don’t like other music.  My other favorite is Latino Pop.  i bet you weren’t expecting that one, huh?

Ok, my 15 deserving bloggers are as follows:

1.  I Am Awake Now Thank You VERY MUCH

2.  Spicyt’s Blog

3.   MySexyEndo

4.  Ememelle

5.  Living Bendy

6. The Never Ending Headache

7.  The Nocternal Laundress

8.  Midnightdemons7

9.  Painful Hilarity

10.  PEACE. PURPOSE. PONDERING.

11.  StoryShucker

12. BoredSick

13. Just Another F-bomb

14. EDS Info (Ehlers-Danlos Syndrome)

15. RachelMankowitz

Be Your Own Advocate

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co-written by IamAwakeNowTVM

Have you ever been afraid as you’re walking into the doctor’s office? You just had tests done and you’re afraid that your test will come back negative?  Most people hope, even PRAY for negative test results…’the cyst was benign, you don’t have cancer Mrs. B.’ or ‘the 24 hour heart monitor showed no problems, you’re heart is fine for now Mr. G’.  This is how it’s supposed to be…hoping that nothing is wrong because you feel fine.

There are many people out there, though, where this is just not the case. They know their bodies, they know something is wrong, and they feel pain…but they can’t prove it. They want a positive.  They are sent from one doctor to another, one specialist to another, each doing their own blood work, imaging (x-rays, CTs, MRIs), and other tests just to keep being told “No, I’m sorry Mrs. K.  There is absolutely nothing there that can be causing your pain.  Have you thought about seeing a psychiatrist?” In other words, it’s all in your head.  Are you going to take that?

For me personally, it took two years, one cyst, two surgeries, two GPs and two specialists to mention that I had Adhesions.  One of those general practitioners did blood work and x-rays looking for something that could be causing my pelvis/abdomen to hurt.  Of course, he found nothing.  I went back two more times with the same complaint, because the pain (at that point it was more of a constant discomfort) just would not go away.  The last time I went, my doctor was on vacation or for some other reason was out of the office and one of the other clinic doctors saw me.  He told me in a very antagonizing way that he had reviewed my chart and that the lab work and imaging that had been done previously had showed nothing, so he didn’t understand why I would repeatedly return claiming to have the same problem. I told him that I returned because ‘the problem‘ had refused to go away, so there had to be a reason for it; he in turn refused to listen.  I was informed that there was absolutely nothing he could do but to refer me to a psychiatrist.  I was so angry that he had blown me off the way he had that I was in tears as I was leaving… oh, but there was more.  To add insult to injury, as I went to check out, the receptionist (who had been a coworker of mine a few years earlier) told me in a low voice as she was handing me my referral (that I had absolutely no intention of using) “I just wanted to let you know that Dr. X just told me to add you to the clinic’s list of drug seekers”. I was floored…I hadn’t even asked for pain medication, just answers.  Needless to say, I never went back there again.  Once the pains started getting worse, I was able to describe them better, so this time I went to my ob/gyn.  He did some imaging because my abdomen started swelling besides the pain (which had gotten worse) and he found a cyst.  At first he tried to give it time to go away on its own.  When it didn’t, he scheduled surgery.  After that surgery was the first time I heard the word that now haunts me even in my dreams: Adhesions. He didn’t really explain what they were, just that he had cut them away so I would feel better. And I did…for a while.

It took another 3 years, two cysts, one GP and four specialists to admit that it was the adhesions that were causing my pain.  I moved to another city to go school.  When the familiar pains and abdominal swelling started, I went to the first ob/gyn in my new town.  He found another cyst and told me that I needed a total hysterectomy…(crickets chirping…I was only 27).  I respectfully told the old man that he had lost his ever loving mind if he thought I was going to agree to that, so to try again.  My next option ended up being a fertility specialist.  He did one surgery and it felt so much better afterwards (well of course because the pain was gone…p.s. There is a huge difference between the pain I had before my surgery and normal post-surgical soreness) so anyway, when the doctor’s assistant came by to check on me I already had clothes on and was laughing and joking around. The lady did a total double take to check out what was going on and asked me if I was the one who just had surgery.  I said yes and she was amazed that I felt that much better that fast.  When the doctor came, he told me that he had gotten the cyst and that I had adhesions, but that they were pretty bad and that trying to cut any of them “would have been too risky”.  The second cyst and subsequent surgery was basically the same.  I kept hurting a little afterwards, (not like now, but hurting just the same).  I mentioned it to the doctor and he checked for a new cyst, but there was none.  He told me that he had no idea why I was hurting if there was no cyst to be causing the pressure inside that I was feeling.  He said that the adhesions could be a problem, but that it was beyond his area of expertise and I should see an oncologist because they were the best surgeons – which I did – only to be told that he was very sorry, but he worked with cancer not adhesions. I wasn’t really sure where to go from there, so I decided to start researching these things called adhesions that everyone kept telling me I had. The information said that they could sometimes cause pain, and I had every single symptom mentioned there plus the recurring cysts, so I figured there was a pretty good chance that this was the culprit.  The issue then was finding a doctor who knew enough about them to help.

I thought I was the only one who had adhesions.  I thought that I was some sort of freak of nature (well, at least that I was abnormal) until I found an online support group just for people with adhesions.  Although the support group was based in Australia, I found a lady’s profile on there who lived in Alabama like me.  She raved about the doctor she saw who’s office just happened to be in my town!  I looked the doctor up online and the lady wasn’t the only one who raved about him.  There were positive reviews about him, the other doctor who practiced there, and even the rest of the office staff.  Then I found out that the doctor who founded the clinic had passed away.  So, I focused on the assistant-turned-primary doctor. He had the exact same positive reviews as his predecessor. So I said to myself  ‘Self, I have got to see this doctor.  Maybe he can get rid of these adhesions and my pain will stop” so, I called to make an appointment.  This was a ‘pelvic pain’ clinic.  That was perfect since what I had was pain in my pelvis (are you seeing how this is all fitting together?)  My appointment was actually three months away (pretty busy guy, must be a good sign) but since I had requested to be put on the waiting list for cancellations, it only took about 2 weeks to get in.  The rave reviews had been right.  He was thorough during the pelvic and physical exam, thorough in his assessment of the issues, he asked the right questions, and he listened attentively to my story.  All in all he spent close to an hour with me.  And after reading the reports from the previous surgeries, he said the one thing that I had waited five long years to hear…”You are covered in adhesions; that’s why you’re hurting so badly.” Validation. I even remember telling him that the doctors before him said that they didn’t know why I was hurting because they couldn’t find anything on the tests. That’s when he explained that adhesions can’t be seen on any test.  The only way was by seeing them during surgery.  I still wanted to make sure so I asked him why they made me hurt so badly.  He explained that basically my insides were glued together…organs stuck to other organs stuck to bowel stuck to the abdominal wall.  Every move I made would pull the muscle which would pull the adhesion which would pull on one of my organs, and organs just aren’t made to be pulled on. I asked him if he would be able to cut them out like before so that I would stop hurting.  He kind of got this sad look on his face and told me that he was a good surgeon, but what I needed was a GREAT surgeon.  He told me that by this point, the adhesions were so bad and so much bowel was involved that it would be difficult to find a surgeon willing to operate, but he also said that in the meantime he would try everything he knew to do to help me control the pain until surgery was an option again.  He said “It will be a long bumpy ride, Joy, but I will be here with you the whole time.” I was so happy but so scared at the same time. I had a disease that no one knew about; that doctors wouldn’t admit to.  That disease was causing my pain and discomfort and I was just going to have to live with it.  There was no definite cure, only managing the symptoms unless I could talk someone into cutting out the adhesions, and then there was no guarantee they wouldn’t grow back.  But, on the other hand, I finally knew what was wrong with me, I had a doctor to validate the pain I had felt for so long instead of trying to send me to a shrink or say I was a drug seeker and, most importantly, I had a doctor that cared about me.

The moral of this story is that you have to be your own advocate.

 

You are your best Advocate

Knowledge Builds Confidence

Confidence Builds Enthusiasm

Enthusiasm Advocates!”

Listen, nobody’s going to do it for you.  Do the research, do the leg work.  Get all of your medical records together.  If you have a smartphone or a tablet, put the records on there including any x-rays, CTs, MRIs and then make sure to take it to the doctor with you.  If a doctor tries to say he hasn’t seen the test results…show them to him, right then and there. These doctors are working for YOU, not the other way around.  So if you go to a doctor who doesn’t listen to what you have to say, call them out on it – or better yet, just don’t go back.

 

“I have actually stood up in a provider’s office 5 minutes into a ONE HOUR appointment, reached out my hand to shake his, and said this: ‘I refuse to have my medical conditions and my intelligence insulted.  Would you mind having your receptionist refund my co-pay please?’”

Find a doctor that will listen.  You know your body better than anyone else.  If you know something is wrong, find a doctor who cares enough to find out what.  If you don’t know where to start, but are reading this post, then you are already in the right place…the internet.  Google your city and the type of specialist you need and go from there.  Look up each doctor listed individually.  There are lots of websites that provide reviews and other information you might need such as the hospital they are affiliated with, their address, and their phone number.

Lastly, the prescription drug abuse epidemic has made it nearly impossible for people to get relief from their pain.  Unfortunately, doctors DO look at your appearance and your attitude when trying to figure you out.  If you are too shy, too pushy, act like you are trying to “play” the system, look like an “abuser”, or especially if you don’t have much evidence to “prove” your pain, it is more likely than not that you will be overlooked and not provided appropriate pain relief.  I know that when you hurt, the last thing you want to do is get dressed up to go to the doctor.  You don’t have to.  But you can’t just roll out of bed (without washing your face and brushing your hair) and show up in your pajamas.  You have to be confident in your self and in your story.  But most importantly, be honest about your pain and your pain levels so that you can get the best pain management possible.

The thing is, I was lucky.  I only had to wait five years to get my diagnosis.  There are people who have waited 10 or 15 years…some take more and some unfortunately aren’t diagnosed until autopsy.  Don’t be one of those people.  Do your research, be your own advocate, and find a doctor who cares more about his patients than counting his money at the end of the day. Most importantly, be honest with your doctors so that they can help you.  If you already have a diagnosis but don’t believe you are getting the treatment you deserve, the same goes for you.  The doctor is supposed to work for you.  Find one that will.  Honestly, it will change your life…and for the better.  It will be worth all the work you put into it.

Edited on Jan. 1, 2014

To Share or Not To Share

When I began writing this blog, I chose to do it anonymously.  That way, I would have the freedom to write what I wanted about who and what I wanted and not hurt anyone’s feelings.  Yesterday, I decided that I was ready to branch out and reach more people, but not quite ready to let the people I actually know in on it. So, I opened a new Twitter account.

My old Twitter account would have re-posted anything I posted on it onto my Facebook page as well.  I don’t know when or where I set that up, so of course, I didn’t know where to undo it, Therefore, I have a new Twitter account, one I plan to use because I never used the other one.  The people I know don’t care if I’m feeling poorly.  They don’t care if I overdid it the day before and now are unable to get out of bed, and then have to stay in bed for a few days.  I just don’t fit into people’s busy lives and I can understand that.  However, that is my life now and if I tweet that I’m on my way to see the doctor or I tweet the date of my knee surgery I want it going to someone who cares.  Someone who understands and therefore the news is either important enough for them to care but not so important that people are going to want to come from another country to “make sure things (things meaning M-) are ok”. Actually, that wouldn’t be so bad except I don’t think that his family understands the severity of my illness. Some may even think that I’m making it up for attention since I have to “be good” around them. Of course I may be wrong, but that is how it felt the last time we were all together (see ‘Road Trip).

After I created the new account, however, I realized that I had no friends to add.  I couldn’t, for example, create a new Facebook account because everyone I know is on the other.  Of course I could create the account, but if there’s no one to interact with, then what’s the point?  The thought made me very sad.  This was last night (well, night before last considering I am writing this and it is almost 5 am) at approximately 4 am when the aforementioned sadness hit, so I was able to cry.  And I did.  I cried myself right back to sleep.  So hey, if you’re looking for a cure for insomnia, save all that pain and frustration until nighttime and then let those tears loose.  After a good 30-45 minute cry I am out every time (especially if I’m lying down and crying into the pillow).  I know it’s an odd suggestion, but then I’m odd…my regular readers should expect some quirky-mess from me by now.  When I woke back up at 6:30…wait, I need a disclaimer: (Disclaimer: I didn’t say you would sleep for an extended period of time, just that it would put you to sleep.  I should also let you know about the extremely puffy eyes you’re gonna have when you wake up after that 30 minute cry.  I don’t want to be blamed for them.  It just happens people…oh yeah, any advice given anywhere on this post is from my experiences and I don’t always do the right thing so you should probably think for yourselves or ask a doctor…end of disclaimer) lol.  I should probably put a disclaimer permanently on my page somewhere…I’ll work on that.

So, after a good cry, and a little sleep, my mind started trying to mentally go through everyone on my Facebook friends list to see who I could trust with my blog (there has only been one person so far). Of course, all of M-’s family is out of the question (I mean, they’re in-laws and they are going to take his side) which therefore would leave me with the need to edit the posts I already have and to watch my subject matter in the future by not mentioning him again except for to say that he’s great about taking me to the doctor and caring for me when I’m really sick (both of which are true by the way).  But I can’t do that.  My whole point in this blog was to help other people (and hopefully myself along the way) and to let people know that they aren’t alone, that there are countless numbers of us ready to take you and *softly* squeeze you.  there are people who will understand and be there when you need to vent.

I can’t and won’t change what I’ve written because I’ve written from the heart.  And besides, relationship issues can arise with any loved one for any number of reasons, but especially when one of them suffers with chronic pain.  It is hard for them to understand a pain that they can’t feel or see.  Our pain is a never-ending cycle of suffering (physically and mentally) and as much as they might like, they can not do anything to help us…can you imagine how hard that must be for them?  Add to that the fact that “people with unrelenting pain…also have trouble sleeping, are often depressed, anxious and even have difficulty making simple decisions”. That is a lot of burden for any relationship to bear especially a romantic or patient/caregiver relationship.  The topic of relationship issues is not only applicable to the discussion of pain, but also to the examination of how emotional issues can worsen physical pain. Therefore, I will not change my blog so that others can read it.

I believe I will carefully go through my “friends” list and pick out a few who really wouldn’t give a damn one way or the other and then go ahead and then either let them know about this blog or my new Twitter page where I will be “tweeting” each new post. If they want to read it ok and if not ok. But I feel that people I know need to know what is wrong with me. Adhesions is an illness that far too little people know about, but far too many suffer from. Some cases are more extreme than others and I just happen to be on the extreme side.

I think what I mean to say with all this rambling is that I’m tired of hiding here at home. I want my best friend since elementary school to know why I haven’t been around more to spend time with her beautiful twin boys. I have been hiding…because I didn’t want anyone to ask me how I am. This blog is the best way to try to explain to people what I go through. I can sit here and wallow about the fact that no one cares, but if I don’t let them know – don’t give them a chance to understand – then I won’t ever know if they care or not. I do know that if I give them a chance to read my blog, then conversation can resume and I won’t have to answer that awful question “how are you doing” that so often gets asked because it’s just what you do and so often gets answered “fine” to keep from having to explain otherwise.  If they’ve read, they’ll already know. And I will know who really cares. However, if people are too busy in their lives to worry about mine that’s ok. I have met people here who really do care, who write me and ask me how I’m feeling and when I say not great they completely understand. Do I really need any more than that?

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! 🙂

Quote

“…the heroic physician keeps an open mind, considers his/her patient’s well-being to be central, and does not let fear of the unknown get in the way of ameliorating suffering.”

–Michael E. Schatman, PhD, CPE

 

 

Thank you Zyp Czyk for the quote. You can find out more information here.