My Week Away From Home

I just spent a wonderful week away from home at my sister’s house. I really needed the time away and I had a great time with my sister, my niece and grandniece, and nephew. I suppose the highlight of the week was my grandniece, who is 18 months old and one of the smartest, most beautiful babies you could ever meet. No matter how bad you feel, a simple look from her big blue eyes leaves you with a big smile on your face. I found that out the hard way.

Towards the end of the week, my sister ended up in the hospital to have a kidney stone removed that was stuck and couldn’t pass. Since I was staying with her, I ended up spending the next two days and two nights with her, my niece, and grandniece at the hospital. If you think hospital beds are bad, try the uncomfortable recliners. Add to that multiple trips all the way to the other end of the hospital to the cafeteria for food and I was more than exhausted. My pride was the only thing that kept me from asking to borrow a wheelchair on the second day. The funny thing was, that no matter how bad we felt or how tired and cranky we were, just having the baby there kept us going. Well, she definitely did for me. To be honest, her mom was a little frazzled by the end of the hospital stay.

I am still recovering in bed from those two days, but all in all the week gave me time to think about things and put what’s been bothering me in perspective. Even though my sister has not always been there for me when I was in the hospital, it feels good to know that I was there for her. It has reminded me about how important family is and how they usually are there for you, especially when you need them the most.

I’m Back!

I suppose it’s time for me to write a new post. I know that it has been a while and that many of you have been worried about me. I am truly sorry for any of you who have worried. My life…mostly my personal life…has been a wreck for a while now. For that reason I needed some time away from blogging to think about things and to process what I’ve been through. I am very sorry, but I still am not ready to touch on that subject in any more detail than I already have.

Health-wise I suppose I have been doing ok. The emotional stress that I have been through has been challenging and has of course taken somewhat of a toll on my physical well-being. However, I suppose that all in all I am doing well. I stopped taking the Lyrica and I am now taking a medication called Gralise which is an extended release version of gabapentin. At first I was worried about side effects since many of you have had trouble taking gabapentin, but so far I have been doing well with it. It is helping much more than the Lyrica and after a month I still haven’t noticed any side effects. I have however been having a lot of trouble with my teeth. I went undiagnosed for a very long time with hypoparathyroidism which broken down in simple terms is an extreme deficiency of Vitamin D. That deficiency causes the body to actually take calcium from the teeth and bones for use elsewhere. I have been on a huge dose of Vitamin D which has helped to regulate the parathyroid gland, but since it went undiagnosed for so long my teeth have really taken a beating.  I have several teeth that have broken off at the gum line and others that are on their way to doing the same.  Although I have medical insurance, I don’t have dental insurance.  So, getting my teeth taken out and dentures made (which makes me sick to have to do at my age) just isn’t on the table right now. The cost is very high and I have more things that I need to worry about right now. The problem with that is that I am in extreme pain from the exposed nerves in my mouth.

I have an appointment with pain management today and I will hopefully be able to explain all of this to them. Hopefully together we can come up with some plan to manage the pain until I can save up the money to have the dental work done.  It’s strange that my mouth hurts more right now than the pain from the adhesions and/or fibro.  I will try to keep writing and let you all know how everything goes, but I am still not ready to write every day.  I do however promise to do my best to not only get back  to writing, but to go back and read everyone’s posts that I have missed out on. I still have them all in my inbox just waiting to be read.  You have all been so supportive of me since I started this blog and I am sorry that I haven’t been around to be equally supportive to all of you.

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“Broken”

I’ve been battling with myself for a while, not really wanting to talk to anyone and wanting to spend time alone. I am not sure when or why this started, but I’m hoping to crawl my way out of this hole soon. Thank you all who have been worried about me…you have no idea how much I appreciate it. I wanted to share this song with you all. It comes from the movie “Broken Bridges”. It is a song that lets you know that however you are feeling is ok. Enjoy.

Guest Post: Mendy

Image credit: englishwithatwist.com

Image credit: englishwithatwist.com

This is another one of the friends that I have met in the adhesions support group that I am in on Facebook. We are alike (and unusual from the norm) because our adhesions formed mostly from infection instead of from surgery. I hope that you enjoy reading her story. If  you do, please comment and give her a hello.

 

 

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My name is Mendy I’m 51 years old from Cocoa, FL and this is my story:

My life with abdominal adhesions began in 1979 when I gave birth to my son. I was 17 and had an easy pregnancy and delivery, when I went in for my check-up I told my gyno that I thought I had an infection. He said I didn’t. We went back and forth like this for a few years, eight years to be exact, when he finally told me that I didn’t have an infection it was just “gods” way of punishing me for having a baby so young.

I changed gyno doctors and the first thing the new doctor did was clear up the (non-existent) infection which turned out to be PID. Since I was now re-married and wanting to expand my
family we started taking fertility pills because I was not getting pregnant on my own. After two years of taking the pills I found out that I was pregnant. My new husband, myself and my 10 year old son were over the moon with excitement. I was four months pregnant when we had the first ultra sound and found out that something very strange had happened, I was pregnant but a baby never formed it was just a blob and it was known as a blighted ovum and the pregnancy would terminate and a D&C would need to be performed. After a period of mourning and healing time we decided to try again, this time my doctor wanted to do a laparoscopic to find out why the pregnancy did what it did and to see why I was unable to conceive normally. He did a video laparoscopic and found dense multiple adhesions that had all of my reproductive organs twisted and tied and adhered to other organs and my abdominal wall. They said it was called a frozen abdomen. He removed as many as he could safely get to and told me that my chances of ever conceiving or even carrying a baby to term was minimal at best and definitely not recommended. The PID for eight years had done the damage and that my life would never be the same.

For the next nine years I went from gyno to head doctor to gastroenterologist back to gyno in a viscous circle because adhesions don’t show up on any test so therefore it had to be in my head. In the meantime my menstrual cycles were coming very erratically some times I would have my period for months at a time and then they would stop for months at a time and the every day pain was getting worse and worse. I literally crawled into a gyno’s office and went through the story with him and begged him for the hysterectomy because I was told 10 years prior that was the only thing that was going to stop the pain. He refused because I was only 27, I asked him to watch the tape and get back with me. He phoned at 9pm that night and said he was setting me up for emergency hysterectomy the next day. This man was a god send. I don’t know what he did but I came out of the hysterectomy with my belly cut open from hip bone to hip bone and was told that the adhesions were so dense he had to stop the laparoscopy and go in abdominally, he removed adhesions for hours just in order to get to my reproductive system and while he was there he just removed everything so I wouldn’t ever have to have surgery again. He said he put some sort of surgical gel in and tried to coat everything to try and slow the growth of the adhesions down some but no guarantees. I was pain free for 6 glorious years and then had to have an emergency appendectomy. That was in 2003 and the pain has increased over the years until now I am back to living on a mostly liquid diet to try to avoid blockages and further surgeries. Adhesions have destroyed my life, I am no longer able to live a normal life everything I do depends on how bad the pain is that day. I can not plan anything that I can’t excuse myself from at the last moment most of my friends abandoned me years ago because they can’t count on me to be there physically and they definitely don’t understand because I “look fine” so it just doesn’t make any sense to them. I’ve lost my career because of the pain, I could take pain pills and make it through the day but who wants a doped up employee and if I don’t take the pills I am doubled over in pain and crying at my desk so my career ended in 2011.

My hope is that some day they will find a way to stop these dreadful ropes that tie my insides into a ball, if not for me than for future generations so they don’t have to live this way.

Thank you for listening.

 

 

Ok my friends, there you have it. Mendy’s story. Please leave a comment, even if it’s just a hello to let her know you stopped by.

Down Time

I know that it has been a while since I’ve written, but I’ve needed some down time. I did way too much during the first few days of the month and now I’m paying for it. I’ve spent two days completely bed-bound and then another two days where I have been able to get out of bed for short periods of time and then I have to lay back down again.

I have also dealt with some recent disappointments. I would rather not go into details. Just know that I have been sad lately. I will climb out of this hole soon enough. I am strong ad will recover soon from this down time. I have also gotten behind in reading your blogs. Once I’m able to sit up for longer periods of time I will catch up on those.

I just wanted to let y’all know that I’m still here, still kicking it, and will be back soon. I hope you are all ok and having good days.

Guest Blogger: Laura Macky

Image credit: englishwithatwist.com

Image credit: englishwithatwist.com

 

Today I have a special guest for you all to meet. Her name is Laura Macky and she is a photographer, showcasing her beautiful work on her blog lauramacky.wordpress.com. You can read a bit more about her on her “About” page found here. Like many of us, Laura has spent a lot of time with her “happy face” on to the rest of the world, all the while hiding her physical and emotional pain on the inside. I really hope you all enjoy her writing because I’m trying to convince her to write a series of posts (in other words, let’s show her lots of love in the comments section so that she’ll come back 😀.)

Enough of my chattering, here she is: Laura Macky!

I’m honored that I’ve been asked to do a guest blog here. It’s kind of a big deal for me because I’m one who likes to present a smiling face and one who doesn’t show what’s really going on inside. But I think a lot of us are like that, don’t you? Lately, life has been a journey of awakening, spiritual growth and learning how to deal with a myriad of physical and emotional issues. Thankfully, I’ve learned how to awaken creativity inside of me in a new way (meaning photography) which has given me a new lease on life!

Almost as far back as I can remember, I’ve battled depression and addictions due to a dysfunctional upbringing. Growing up was not a happy place to be most of the time emotionally, and when I started having physical problems on top of that, it sunk me further into depression and addiction. Fortunately, I’ve been working on myself with a wonderful therapist who I call “Dr. Bill”. He is a gem and I really don’t know where I’d be today without him.

My physical problems pretty much all started with an auto accident which set me up for a lot of health issues. After having neck surgery, I was left with nerve damage on my right side from my jaw down to my fingers which means I have a very hard time doing simple tasks and have constant pain on that side. Also after the surgery, I developed a severe case of fibromyalgia. For years I kept thinking it would “go away” and I spent a lot of time in doctors’ offices reading a lot of sailing magazines, lol. I’ve often wondered if sailing magazines give discounts to doctors or if there really are that many doctors who sail.

Needless to say, I was very down in the dumps. I could no longer play the piano which had been my “go-to” hobby since I was four years old, gone were the days of working out at the gym which I so loved, and I was so depressed that I really didn’t want to live any longer. I was a mess yet always presenting a smile on my face to the world and my family.

Finally, I realized I had to do something. Slowly but surely I started a Laura Macky overhaul in the way I interact with life. The realization set in that things weren’t going to improve drastically physically, so I had to change the way I viewed life from the inside. I started working on myself through therapy and support groups, but I still missed having a hobby. Hmm…what to do…….

Enter photography! It’s a fairly new hobby for me, more seriously delving into it in the last year, and it’s made all the difference. Photography has given me the excitement of seeing things again. Our world is so beautiful and I’m happy to be a part of it again; not only physically but with everyone I’m meeting via WordPress too. I really enjoy reading others’ blogs of all different types, and when we all share things together it makes it even better!

I really appreciate this opportunity to open up and share what’s really behind the lens.

Let’s Talk About Em-pa-thy – Let’s Talk About You and Me

Empathy is a hell of a drug. Isn’t it? It’s the ability to ‘trip’ on the emotions, feelings and thoughts of an-other. Unlike sympathy, it requires you to directly engage with someone else’s insides. You’ve got to walk in the other person’s shoes. You can’t just sit back on your pillow of pleasantness, laugh on the inside, and maybe, just maybe – only out of sympathy – extend your ‘supportive’, un-emotionally-fettered hand out for aid. Nope. Empathy demands your hands get dirty. It demands you to dive back into the dark places you’ve already been, to draw on the emotions and thoughts and experiences you’ve had, so that you can use those past-heartaches to relate to The Other.

When you empathise then, you’re not merely indulging in a purely intellectual exercise. When you’re empathising, you’re not simply observing your past experiences and identifying them as the correct response to The Other’s woes. It’s not like a school assessment where you merely have to recall data by dipping into your memory bank to retrieve the right answer. Humans don’t work like that…

To read more of this great blog, click on the following link: Let’s Talk About Em-pa-thy – Let’s Talk About You and Me.

Thank God!

Literally! I was finally able to go to the pain management doctor yesterday, just in time to avoid going through withdrawals. (See post Sitting ’round the Kitchen Table 2) So, here’s how it went:

ALDOT (Alabama Department of Transportation) finally got the roads and highways cleared of the abandoned cars from the snow and ice from Tuesday (my appointment day). The roads were sanded to help with the ice (yes, they use sand instead of salt. Why? Don’t ask me!) and the staff at the doctors office were able to make it in. I called shortly after 9:00 am to see if they were open, but the message on the machine said that they were still closed because of the weather. I started panicking again because I was completely out of pain pills and my patch was supposed to be changed today (Friday). Around 1:30pm I sat crocheting trying to calm my nerves and the idea popped into my head to call the doctors office again. I was convinced that they wouldn’t open clinic back up until today and then not be able to get me in because of how many patients they had missed. However, I had this URGE to call, so I picked up the phone and dialed (ok, that’s a lie. Who dials anymore? I pushed “call” on their contact page in my phone…doesn’t everyone?). To my surprise, the “this office is closed due to extreme weather conditions” message was gone and it gave me the option to speak with the receptionist. I was thinking “this can’t be…it’s a joke, right?” but I was put on hold and less than 30 seconds later a receptionist answered the phone. The first words out of my mouth were “Thank God you guys are open!” I proceeded to explain that it was impossible for me to make it to my appointment on Tuesday because of the roads being blocked by wrecks and abandoned cars and how I was completely out of my medicine. I truly expected to be told that they wouldn’t be able to get me in until next week, but a few seconds later, the lady asked me if I could come in that afternoon. Hell yeah!

Actually, I said “absolutely” and she gave me an appointment for 3:30 pm. I was ecstatic. After so much worry and anxiety about not being able to get in and having to go through withdrawals, it was definitely good news. I threw my hair up in a ponytail, got dressed, and ran slowly made my way out the door…hey, there’s still ice around here. I made it safely to the doctors office where I was seen in record time. I told the nurse practitioner about how scared I was and she told me that they would always get me in and that I didn’t ever have to worry about going through withdrawals…not because of something like this…and when the time comes and I’m ready to stop taking the medication, then they will wean me off in a safe way. It made me feel better knowing that they aim to prevent it as much as I’m scared of it.

The visit went well. I am staying on the same dose of medication since it has been helping and has finally gotten me out of bed! We discussed nerve blocks again. There is only one nerve block left that they can try. I have been debating this one for a while now, but finally agreed to go for it. Who knows, it may be the one to work. That is assuming insurance will pay for it. So, I figure if it’s meant for me to have the nerve block then it will be approved by insurance and if not, then it won’t. I am totally leaving it in God’s hands right now since he “spoke” to me yesterday. For the first time in a very long time I don’t feel as though He has abandoned me. I’ve always known he hadn’t, but honestly sometimes I felt like he had. Well, yesterday he made up for it. Oh, and the NP gave me the number to a place that does “the ROLF method” or visceral manipulation (I think they’re the same, but I need to look it up and check in case any of you have questions about it). This was very exciting because I have looked into various “alternative” treatments and this seems to be the best suited for my ailments. I still have to check with insurance, but I don’t believe that it will be covered. I’m hoping and praying that the treatments aren’t that expensive because I would love to be able to try it to see if it actually helps. The thing is, I didn’t even know there was anyone in this area who did this type of manual myofacial manipulation so it is quite exciting to know that there is someone locally.

I got out of the doctors office in record time and made it to the pharmacy without incident. I got my medicines refilled and made it back home safely. I truly thank God for his help today and for finding a way to take care of my needs.

What happens when patients know more than their doctors?

What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study – BMJ Open

Those of us with rare illnesses and mysterious “syndromes” have had to become experts in our own conditions because most doctors won’t be familiar with it.  No doctor can specialize in every rare illness, so it’s not surprising that they may not be familiar with ours, but doctors should know enough to know when they don’t know.

When doctors believe they know better just by virtue of being a doctor, problems arise.   This lengthy and detailed study finally validates the resistance and rejection we encounter when we know more than our doctors about our illness.

To read more, click on this link:  What happens when patients know more than their doctors?.

This is exactly the problem I face when seeing a general practitioner!

Sitting ’round the Kitchen Table 2

Image credit: eBay.com

Image credit: eBay.com

This week has definitely had it’s ups and downs. The ups were that A) I’m doing better on this new medicine B) M and I decided to work things out, and C) I bought a chromecast which is really cool. Now, the long list of downs. First of all I have been spotting this week. One day spots, then two days without. Two days spots, then one without. The last time this happened, I had a polyp or two on my uterus. I’m praying that this is not the case this time because I really don’t want to go through another surgery right now. I’m hoping that it’s one of two things. 1) Not taking my BC pills at the same time each morning (it only varies by an hour or so, so that shouldn’t be it) or 2) not doing my stretches like I should. These were the two suggestions given to me by ladies in my adhesions group on Facebook. So besides the menstruation-like pains and the severe bloating, my week was pretty good until today.

Image credit: http://briansroom.com

Image credit: http://briansroom.com

M and I had a long talk and we were trying to work things out. While this made me very nervous, it strangely settled my nerves at the same time. He had a list of rules and he knew that any breach in those rules will put us back where we were before. Today was a rough day. I had an appointment at pain management. They called to say they had a lot of cancellations and did I want to go in early. Sure. It was cold, snowing, and I wanted to get back home before it got any colder. Well, what would normally be a 30 minute drive took 3 hours. Every time we chose a road, it was blocked because of a wreck. So we would go another way just to find it was blocked. We tried four different routes before M started to loose it. I decided that it must be the stress of driving on very icy roads. We finally gave up and came back home. My nerves were shot. I took my medicines and a nerve pill and then decided that I would crochet to finish calming myself down. Since it was 7:00 pm, it was too dark for me to see with just the lamp on my bedside table. I asked him to turn the light on because he was closest to it. He conveniently ignored my request. When I asked again, he blew up. Same as old times. He said that he was going back to “his” room where I wouldn’t ask for the light to be on all f*%$ing night long (it was only 7:00!!!) that he guessed that was what I wanted anyway because I am happier with my cigarettes and my drugs. Whoa! Where did that come from? So, once again, I am just a drug addict according to him. I am so very tired of being insulted. I’m done. If someone in his family is reading this, I’m sorry, but I have put up with as much of his self-centered, insulting, bullshit as I can take. I’m done.

I had bought a Chromecast. Since all I have is a digital antenna in order to save money on cable, this Chromecast is awesome because all the cool stuff I can watch on my laptop or tablet can now be watched on the big screen. Well, he decided to take the tv with him when he left the room. So much for my new toy.

You know, when I started writing this post yesterday it was full of good news. Positive things. However, in one split second, all of that has changed. I had to erase most of what I had written to tell you guys about what’s going on now. My good news about M is bullshit now, I can no longer watch the chromecast I bought because I don’t have another TV, and I am so upset that I am physically shaking. Oh, and the icing on the cake is that I don’t know when I will be able to get another appointment with my pain specialist. Since they are only allowed to write the script for a 30 day supply and those 30 days are over, and because like usual no one answers the phone there, I have no idea when I will be able to refill my pain meds. So, now withdrawal…the one thing that scares the shit out of me…is most probably imminent. I need a friend so bad right now. Of course, I know that there is nothing that can be done or said to change anything that has happened. It just hurts so bad – I hurt so bad – physically and emotionally. It’s my own fault for getting my hopes up again on a sorry SOB (no offense to his mother because I love her) who doesn’t deserve my tears. That doesn’t make them flow any slower. I so wanted to write a positive post for a change, but I promised you guys I would be real, so here it is. My real life for all the world to see. I guess I should feel ashamed for “airing my dirty laundry” publicly, but I only have you guys who care about me. I guess that’s it. Off for a good cry now and to try to figure out what was so bad about the freaking light being on. If it was 2:00am I could understand. But 7:00pm…really?

Image credit: http://we heartit.com

Image credit: http://we heartit.com