Choosing To Fight



If  you follow me on Twitter, you may have noticed that I had a not-so-hot doctor’s appointment yesterday morning. This past weekend was the worst flare I’ve had to date. I was in bed pretty much from 5pm Friday until 7am Monday. Nothing, I mean nothing, seemed to be helping the pain. Even my prescription medicines were not touching it so on Monday I started calling doctors. The pain clinic was my first call and since prescriptions cannot be changed over the phone, the nurse set up an appointment for 8:15am yesterday. I also called my rheumatologist who tweaked my dosages of my medications for fibromyalgia (we had discussed the possibility of needing to up the dosage at my last appointment so we both felt comfortable with phoning in the change versus needing to drive an hour for an appointment). I see my primary doctor next week so I knew there wasn’t a point in calling because there was no way I would be able to be seen before my scheduled appointment.

 

The visit to the pain clinic was supposed to be a short one which turned out to be not the case. Thirty minutes after my scheduled appointment time, the doctor finally came in and being as I was the only patient there I was already frustrated. The gist of his response to my pain-filled weekend was to be thankful that the flare didn’t last any longer than it did. I just need to come to terms with major flares being a part of my life and be ok with not having medications to treat the pain. He did not want to increase my dosage (although we had discussed the possibility at my last appointment) however he agreed to give me a extended release pain medication to help prevent pain from waking me up in the middle of the night. The catch (there always has to be a catch, right?) is that for now he wants to go back to seeing me every 30 days versus 90 for drug tests and pill counts. On the way out the door, he let me know that I was overweight.

 

Needless to say, I left the appointment angry, frustrated, and defeated. I was angry that it seemed that he had no concern for my quality of life as a patient. I was frustrated that, even though it was never said, he seemed to be thinking that I was exaggerating my pain in hopes to get more medication. I was defeated as  it was if  the prescription he handed me said really said “give up hope for ever having a normal life.” The twenty minute drive to work seemed to last an hour as I attempted to process everything that had just happened. When I pulled into my parking space, things changed.

 

As I took the keys out of the ignition, I looked down and saw the word “fighter.” It served as a powerful reminder and I made the conscious decision to not go down without a fight. I am not going to accept that my life is over and any hope of relief is gone. I am not going to allow one jerk-faced doctor take my dreams from me.

 

I can and I will fight. I will fight knowing that my God is bigger than my pain and He will provide strength to press on. I will fight knowing I have an amazing family loving me through it. I will fight knowing that I have strong and inspiring women who are traveling the same road fighting alongside of me.

Too Tired to Fight

My heart is broken into a thousand pieces as I write this. I am a part of an endometriosis support group on Facebook where 2000 ladies can come find support, encouragement, and support. Today we gathered together in prayer for one of our sisters who decided she couldn’t live with the pain anymore and attempted to take her own life. She survived but is not in a coma with the prognosis unknown. While I may not have ever met this sister in real life or not even know her name, I know her as we have traveled the same road that binds us together as endo sisters.

 

I grieve for her life as at her young age, she left like it would be better to end her life than to continue to live with the pain. I grieve for her family who are holding her hand praying that she wakes up and wondering what they could have done to prevent this from happening. I grieve for our group of sisters that come from all different parts of the world and from all walks of life to become a family and feel the pain of loss knowing how easy it can be to find yourself in that place where you question whether or not is worth it to press on.

 

What most people don’t realize is that chronic illness is not just a physical challenge. Illness affects all areas of your life from physical to emotional to social to spiritual and if you’ve never faced it you may not know how exhausting it can be to continue fighting.

 

The physical pain can be bad enough on its own and if you couple that with medications that are heavy on the side effects, hit-and-miss treatments, and hearing “there’s nothing we can do” one too many times, it can be hard not to give up the fight.

 

I think the general public may not see the emotional side of an chronic illness the same way they would for a person facing a terminal illness like cancer. Guilt is just one of the emotions that can be tied with illness. You feel guilty for not being the wife/mother (husband/father) that you think your family deserves or that your family would have if you were not sick. You feel guilty that you are not contributing financially the way that you would if you were not sick (or your being sick is a drain on finances). You may be made to feel ashamed of your illness. Maybe you’ve got a family member who doesn’t believe endometriosis is a “real” disease and therefore its all in your head or you are exaggerating the pain. You may be angry or overwhelmed or depressed when you think about your life with chronic illness. The emotional fatigue can be very overwhelming and sometimes might be harder to face than the physical fatigue.

 

Spiritual fatigue also plays a role in your overall health as someone with a chronic illness. You may question where is God in all this. Did God cause you to be sick or was it something you did? Why does these illnesses exist in the first place as they cause so much pain and destruction? I think facing a chronic illness (like many other things in life) can cause a make-or-break time when it come to faith. You can either come to a point where you lean on God’s grace and, even though you may not understand it, you choose to keep on fighting with faith that God will see you through it. Or you can choose to turn away. This spiritual wrestling match can only add to the emotional and physical battles you are already fighting.

 

I mention this not to create a gloomy mood for the holidays but to share a real perspective on the side of chronic illness that is not often discussed. In my eight years with chronic illness, I have gotten to the point where I’ve questioned if the best thing to do was to give up. The pain was too much. There was no promise of relief. I felt like a burden to my family. I didn’t know what else to do. Thankfully through many of my pastoral care classes I learned to become pretty self-aware of these feelings and with the support of my husband and my doctor, I went to counseling. The last two weeks have been very difficult as once I again I feel like we’re in a place with no options and no relief and once again began asking myself the same questions so I requested a referral to see my counselor again last week with the support of my  husband and doctor who helped encourage me to take that step.

 

Maybe you need to be the person in someone’s life to help make that step. Maybe it is your listening ear or words of support and encouragement that help someone see that life is worth living and the battle is worth fighting. Maybe it is you that becomes an advocate for your loved one when he or she is too tired to fight.

 

So if you have a moment, I would ask you to say a prayer for this endo sister and her family. I would also ask you to pray for your friends and loved ones who may be fighting chronic pain and/or chronic illness as the battle is long and hard. I know that the support and encouragement I receive from you, my readers, means so much to me and helps me keep on fighting the fight!

A Post-Op Update of Sorts

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**

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