A Post-Op Update of Sorts

Nov 11, 2011

A Post-Op Update of Sorts

November 11, 2011 By Jamee 8 Comments

Tomorrow marks 3 months since my most recent laparatomy for endometriosis and if you’ve been a reader over the past couple months, you would know that this recovery has not been easy for me. I had figured this recovery would be similar to that of my hysterectomy considering the incision was the same but I never thought it would be worse considering they actually removed organs before but that has not been the case.

At 3 months out, I am still dealing with intense pelvic pain but we may be seeing some light at the end of that tunnel. Last week, I went to see Dr. H for a visit due to my pain levels and she decided to do some cultures to send off for testing. Thankfully she did. Results came back yesterday and I’ve got a minimal staph infection (probably caused by the incision where they had to remove endo that had grown where my cervix was removed). So as a result, I’m on a week’s worth of antibiotics but that would ease quite a bit of the pain I was experiencing.

We are also taking the time to work on treating my IC and I was able to get my El.mi.ron prescription changed back to the dosage that it was before the national shortage. Hopefully this will add to the relief once my system gets adjusted to the new level.

I have also previously mentioned the nerve issue I’ve been having with my left leg. This was the issue that scared me enough to head back to the doctor. I was concerned that somehow things were getting stuck where they weren’t supposed to be and pressing on that nerve but she doesn’t feel like that is the case. Its possible that nerve got strained or injured somehow so I’ve started a new medication to help with nerve pain. It hasn’t really helped the nerve pain yet but boy does it help me sleep better at night which is awesome!

Probably one of the most exciting things to come out of this appointment was a new diagnosis of sorts. Endometriosis can come with some quite unpleasant and often unspoken side effects so I always chalked all my pain up to endo. After some rather personal discussion between my husband, my doctor, and myself, she felt as a result of my years of chronic pain that I have developed vulvodynia which has made certain activities extremely painful so she was able to prescribe me a lidocaine gel to help make those activities more enjoyable and it worked! Woo-hoo! Sorry if that is TMI for some but if you’ve lived with certain chronic illnesses, you know that its a big deal!

So I feel like things have the possibility of looking up in the near future. Not holding out hope to be a 100% pain-free (which would be nice if Santa wants to drop that off in my stocking) but I am hoping that I’ll be able to adjust my normal to a more active normal!

P.S. In family news – we are finally rid of the stomach bug! **Fingers crossed**

Filed Under: chronic illness, health, marriage Tagged With: endometriosis, pain, relationships

Aug 18, 2011

Guest Post: When Loved Ones Hurt

August 18, 2011 By Jamee 5 Comments

So excited to introduce you to another guest while I’m still trying to recover from surgery! I met Samantha through the wonderful world of Twitter & blogging and am so happy to have her here at A New Kind of Normal! As a spouse of spoonie who deals with chronic pain, she offers a wonderful perspective on how to care for someone you love who deals with chronic pain and/or illness and also how to be receptive of such support if you are the one that is ill! This is a great follow-up to Cheryl’s post on pain & relationships from a spoonie’s persective! hope you enjoy! Be sure to visit her blog & say hello!

~~~~~~~~~~~~~~~~~~~~~~

Immediately after hearing that first gasp of air, that first cry, I searched through the haze to find my husband. I could see it in his eyes – the uncertainty, the nerves. Every new dad probably has the same look on his face but this was something more.

I held my breath as the nurse handed little man to him for the first time. His eyes lite up with love, understanding and happiness. But pain was also hiding in his brown depths if you knew where to look.

image property of Life As Wife

My husband Kris has Torticollis, a muscle disorder in his neck that limits his range of motion and his ability to carry and hold things or stand for long periods of time. The muscle, the Levator Scapulae, is responsible for allowing you to turn your head. When there are muscle spasms a loss in range of motion and stiffness of the neck can occur. Basically, Kris’ Levator Scapulae is constantly spasmodic; therefore, it is tight.

I didn’t know how much pain my husband was in on a daily basis until we had our son. He was good at hiding it from me even though he was medically discharged from the military after his injury was aggravated. When little man was born, I started noticing his frustration. Kris wanted so desperately to rock our son and hold him while he slept but his chronic pain limited his ability. My heart was and still is aching for him.

Our son has brought us closer and allowed me to be more understanding when Kris has his bad days. Here are five ways you can be more empathetic if your loved has chronic pain:

Don’t assume: that old saying rings true! Assuming what your spouse can and cannot do because of their chronic pain is hurtful and unproductive. I would find myself constantly telling Kris to be careful or not to do something. I know I was annoying him on a daily basis. He is a grown man and knows his limits; he doesn’t need me bossing him around. Of course, my concern comes from a loving place; however, being supportive and letting your loved one live as normal life as possible is key.
Work as a team: I know that it hurts Kris to rock our little man to sleep so I step back and let him get bonding time during playtime, feedings and changes. If there are several things to do around the house, I always try to do the things that I know are painful for Kris. That way, we are splitting responsibilities but he is still taking care of himself.
Give emotional support: On Kris’ bad days, I know he feels really low. I think that being there as someone for him to talk too really helps. Sometimes people with chronic pain undoubtedly suffer from effects other than the pain, which may even include depression. Make sure to talk to someone before YOUR frustration turns into depression or anxiety.
Communicate & Remember: I used to find myself getting upset or frustrated when I felt like I needed more help. Like I mentioned above, Kris is really good at hiding his pain so sometimes I would wonder why he was just sitting there on the recliner, not wanting to play or get out and do something. As soon as I realized he was having a bad day or was having a day of high pain level, I instantly felt my anger melt away.
Above all, love: I know when Kris’ injury was aggravated; it was a big blow to him. He loved the Army and having to retire was really hard on him. Sometimes simple tasks are no longer simple. Self-esteem can also be an issue on bad days. Remember to show and verbalize your love and give encouragement.

Do any of your loved ones have chronic pain? How do you help them deal with it?

Samantha is the author of Life As Wife. She has a degree in Print Journalism and Political Science. Engaged in high school and married in college, Life As Wife follows Samantha’s nontraditional journey and documents her job as a writer, wife and new mom.

Facebook Twitter

Filed Under: chronic illness, health, home, marriage Tagged With: chronic illness, guest post, health, marriage, pain, relationships

Aug 15, 2011

Guest Post: Making Pain & Relationships Work

August 15, 2011 By Jamee 4 Comments

I am currently recovering from my surgery on Friday so I am so thankful to have some wonderful e-friends stop and guest post in my absence! I met Cheryl through the blogging world and am so glad that our paths crossed! She will be sharing her experience with the impact that chronic pain has on relationships as well as some tips for both the spoonie and his/her partner on keeping your relationship strong in spite of pain! Be sure to check out her blog!

My name is Cheryl and I’m usually found ruminating over at Confessions of a Rambling Mind. I suggested two potential topics to Jamee for my guest spot and she suggested I “talk” about the complexities of balancing relationships with chronic pain. Like Jamee, I’m also an endo warrior and have had a terribly painful back problem for two years (with an OR visit of my own on Aug 8). I was going to toy around with a prior post on the subject but decided that the evolution of my life in the past months meant a new perspective and a new ramble made sense.

I was diagnosed with endo in 2003, after years of increasing monthly cramps gave way to constant pain that had me passing out at work. I’ve also had migraines and hives for a long time and the more recent back injury, along with just a weak immune system (likely b/c it is busy with a misguided battle against my body itself). At the time I was diagnosed with endo, I was dating X. We later married but that ended in 2010 after fizzling for a while. I’ve since found a wonderful fellow (MM on my blog for Military Man). This is my come-from place and my rambles here will focus on romantic relationships but much of it applies to everything from friends to co-workers.

Communication is key to any relationship but chronic pain takes this to a whole new level. The pain had evolved in the time I was X but it had become a true part of my world by the time I met MM. It was important to me that I never hid that. I told MM very early on that I come with this wrinkle. It wasn’t all of me, but it was a part of me. I couldn’t leave it behind and I did feel a bit of guilt making someone else join the battle since it isn’t fun. It is one thing if pain comes in with a relationship in place, but I do think one needs to be honest and clear if it is already present. Hiding the ball never helps anyone since it will come out eventually and your partner needs to know what they are taking on if the relationship is going to become serious.

This raises a tricky point. The partner needs to be honest too. It is hard supporting a partner in pain. It will impact the relationship in so many ways. For me, pain means life takes so much more energy for me than it might for others so I’m often tired. I am not someone who is energized by crowds so I need a lot more quiet home time than others. My partner needs to understand this. And truly accept it. He needn’t stay with me 24/7, I’m all for him going out with some buddies, but I’m not the most social gal naturally and the pain exacerbates this. It also means I can be whiny at times and I need extra TLC. This is reality. And, the tricky part, my partner needs to truly decide if he can handle it. X admitted he considered leaving when it became clear the pain would be a third player in our lives but he didn’t want to be “that guy” who left a sick girl. Well, my message to guys facing that dilemma, it is FAR better to be that guy than to pretend it. We know our pain is, well, a pain. Sure, we’ll be sad if you leave but PLEASE leave if it won’t work for you. Leave before the Big White Dress. The patient’s job is to let you know what you will be facing (assuming the pain pre-exists), it is the partner’s job to be honest with himself (or herself).

Likewise, a partner needs to understand what they can and can’t do. There are little ways you can help, whether it is coming to a doctor’s appointment, taking on more than a fair share of chores, or giving a backrub. But, the partner needs to know that they cannot fix it. And that the patient doesn’t expect them to (if you do, you need to check your expectations). It is always hard to watch a loved one suffer and to be unable to take the pain away. I think this is even harder for men who are raised to be “fixers,” especially with their partner. As a supporter, you need to learn to accept this limitation. If you don’t you’ll go nuts. And it won’t help the patient. I appreciate the little nice things that help but I’ll feel guilt (okay, more guilt…some is always there) if you can’t accept the reality that you can’t solve it.

I don’t want to ramble too long, but I do have one more point and it is one that goes beyond romantic relationships and even applies outside the pain world. I stumbled upon a phrase many years ago and it has become a big part of my world. Pain, and lots of other things is NOT an excuse, but it IS an explanation. When I knew I was having a bad week, I’d let people know (especially those below me on the work food chain since stress trickles down). I’d tell them in advance that I might be a bit short with them. I would NOT excuse my actions but I did offer an explanation. Likewise, I do snap at MM when the pain is bad. A little annoyance will set me off, something that would normally be a tiny bother can set me afire. So I try to be honest. I warn him in advance of a bad pain day or follow an eruption with the explanation that I am fighting pain and on edge. It isn’t always a blanket apology since I may be truly annoyed about something valid, but I do apologize for being overblown. I do not think overreacting to an open cabinet is something that should be totally excused by my pain. I still have to be a good partner and a good person (or a good co-worker, etc). But the pain does explain being on edge and gives it context.

I like Jamee’s blog title. Not long before I stumbled on this site, I was talking with someone. I had a procedure the week prior and said it led to a few bad days but I was “back to normal.” He laughed, shook his head, and said “You normal isn’t normal, hon.” A chronic pain patient has their own level of normal. It simply is. It is our job to help others understand this and to manage it as well. It takes the right partner to join the battle. We are VERY aware of this and, if you are the right person to fight at our side, we’ll be more grateful than we can really say. Thanks, MM (who is taking a whole week off when I get home from surgery to be my nurse and my designated reacher, lifter, and bender). And thanks to all the others who make a complex life so much brighter with their love and support.

image source

Filed Under: chronic illness, marriage Tagged With: chronic illness, endometriosis, fibromyalgia, guest post, pain, relationships