Saturday, November 15, 2008

My heart is heavy...

Today I made a very painful and difficult decision, with the help and support of my wonderful hubby. After much thought and prayer, we've decided to call it quits on the TTC front. Not forever, but for a while... at least until we can pay off our debt and save up for IVF, which probably will be a good few years...

What brought this on? Well, a few things actually. First off, my body has been having a really hard time the past 2 months especially. I've felt my Endo slowly creeping back to very painful levels. I am now so constantly nauseaous from the pain that I've had to start taking Phenegran to help keep my food/pain meds down. The bleeding/clot-throwing has reached new and frightening levels (similar to pre-Lap) and nothing other than Percocet touches the pain. Thats NOT GOOD. I cannot function on Percocet, but I can barely make it through my days at work on Rx Naproxen & Tylenol or Rx Ibuprofen & Tylenol. I am fearful that if I let the Endo keep progressing (which it will as long as we are TTC and doing fertility meds) I will soon be back in the OR having another Lap. This is a great fear of mine, not because of the pain/Lap itself, but because Ben just had an appendectomy and spent nearly a week in the hospital. Our bills from said surgery are just barely starting to come in, and another surgery would devestate us, financially. I simply cannot put us in that situation on a whim to fulfill a dream of mine that may never come true... Not when the odds are stacked so much against us.

I talked to my wonderful doctor today, and while he was sad to hear the news, he always supports me in everything I choose to do. We had previously talked about the "what if's" regarding if Lupron didn't work and together decided that I'd try the Mirena as a long-term treatment for my Endo until we're ready for IVF. Due to insurance, I have to wait until Jaunuary (when they start covering IUD's) to have mine inserted, but for now my doctor gave me the option of going on continuous BC to provide some modicom of relief. I accepted and he's going to give me some samples on Monday so I don't have to purchase them for just a few months.

I hung up the phone and just cried for a while. Even though I know this is the right thing to do, and what my body needs at this time, it's still hard to give up. I feel weak, like a loser that just quit because I'm not strong/brave enough to face more pain. This is the hardest decision I've had to make in a long long time. Thank goodness for my patient, understanding husband... I could not do this without his support.

Despite the pain and how my heart aches right now, I know that there is still hope. In conjunction with this decision, my resolve to go back to school and finish up my degree has been solidified. I thank my Heavenly Father for opening one door for me as He closes another. I trust in His plan for me and while it may be a tough road, I know I am never alone.


My Endo Journey said...

Please, do not feel weak!!! There is only so much we can take...physically, mentally...Endometriosis is EXHAUSTING! I pray that your pain will get better with the BC and Mirena! Your fears ring close to home. I am so afraid of the endo ramping back up that I too have started to consider the alternatives if things start getting too painful to continue. The what "ifs" are maddening!

That is amazing to hear about your new adventure! What are you going back to school for? I would love to go back to nursing school! One day...I always say one day...

The nausea-have they tried Zofran for you? My MD gave me a prescription. It didn't help me as much, but, I know many people have a lot of success with it. They normally prescribe it to cancer patients to deal with nausea during chemo. Sometimes the nausea is worse than the pain. Also, try ginger. I found this brand, gin gin chews...and they really help a sudden wave! Phenegran knocks me out (although sometimes that's nice).

::Hugs:: your way! Thank God for our wonderful spouses!!!! I know what you mean...I'm not sure where I'd be without mine. Hope he is healing well from his sx!

Jeanne said...

I just read your post and I am so, so sorry for what you are going through. As you know, I have followed your blog from day one and I have some idea of what a blow this is... At the same time, I know I am really clueless. I can't imagine what you are going through.

My friend Alicia (aka "Yaya") writes an amazing blog. She has endo. She's had several years of infertility. She has had miscarriages. She blogs about it all with candor, sadness, humor, insight, and compassion.

Her blog has many links that might be helpful to you in this difficult time. She has blogged a lot about infertility and she follows many infertility blogs. She has many readers who have infertility and they leave insightful, supportive comments on her blog.

Here is her blog...


My heart goes out to you as you go through the emotional and physical turmoil you are experiencing.

I may have some thoughts on how to help your nausea. I have had luck with an acupressure point on my wrist for severe nausea. It may sound too easy to work but it has helped me. If you hold out your left hand (palm up/towards you) and look at the very base of the thumb where it "meets" your wrist, then move up your wrist about an inch... press with firm pressure with your right thumb on this spot. Now for about 2-3 minutes, use firm pressure in clockwise circles on this area. This has help me with nausea on many occasions.

Another tip for nausea is peppermint tea. Try to get organic if possible. Peppermint tea is good for nausea.

Also, try eating small frequent meals rather than larger, infrequent meals. Try to avoid rich foods that might agitate your GI tract.

Now, it may sound strange but I have had times where the Tylenol made me nauseous! So that is something to think about and discuss with your doc.

I have also had much success with homeopathy for nausea and for severe pain. Unfortunately homeopathy is quite difficult to explain in a blog comment but it's very easy to actually implement. the trick is finding the right homeopathic remedy for you... for your body and for your symptoms. There are a great many homepathic remedies and it would be irresponsible for me to just tell you what works for me because it may not be what's best for you. The cool thing with homepathics is that there is no interaction between homeopathics and prescriptions. If you have a naturopathic doctor or a homeopath near where you live, it might be worth investigating for the pain AND the nausea.

I know it may not be covered on insurance but I must share my experiences with acupuncture... I have ben going to acupuncture for almost 8 years now. With no disrespect to my many other doctors (there are lots of specialists that I see), my acupuncturist has helped me MORE THAN ALL OF MY OTHER DOCTORS COMBINED!!!

He treats me holistically... my whole body rather than one organ or one body part. He says that in Traditional Chinese Medicine, endo is actually considered SIX different conditions! I cannot begin to describe how much acupuncture has helped me with SO many issues. Mine is not covered and we have LOTS of medical debt. I put my acupuncture right up there with food and housing! I'm not kidding. It's that good for my body. If it is something you are open to, it might be worth a try for the nausea and for the pain.

Women I know with endo have had luck with a special technique called Chi Nei Tsang. It's a type of abdominal massage that is supposed to help break up adhesions. I'm guessing from what you have blogged in the past that adhesion MIGHT be part of your pain? Chi Nei Tsang also help the digestive system work better.

Some endo support group members have found dietary changes helpful for GI symptoms also.

With your history (how severe your endo is), I don't know what your doctor advises as far as future surgery. This is obviously a very tricky subject. I can certainly understand your fear of having another lap anytime soon... especially with the bills you've described. (I have lots of experience with medical bills. So I totally get that aspect)!!!

I am so sorry that your husband has been so very sick. Thank God they finally figured out that it was appendicitis and not food poisoning! That must have been so scary!

Then for you to be so sick while he's recovering... You really have your hands full.

I don't pretend to know what all that is like. I do know that my husband and I have been through very severe, very stressful, very painful adversity (mostly related to my medical condition) and we HAVE gotten through it. It has NOT always been easy, to be sure, but we have gotten through A LOT!

So try to hang in there and take one step at a time. Try not to tackle too much at once and wind up overwhelmed. Try to practice self-care... listen to soothing music, have a cup of tea, curl up with a good movie, bum around the house in your comfy PJs... or whatever comforts you!

If the extreme stress you are obviously under starts to tense your muscles up, this will increase your pain level! So try meditation or acupuncture to "zone out" and give your body/mind a respite once in awhile! It sounds too simple to be as effective as it is... Trust me, though, both can work wonders. (Plus meditation is FREE).

I'm really glad you like your doctor. That is so important!! Try to take one step at a time. Whether it's family and friends' support, your husband's love and support, your own self-care, trying alternative medicine... try to move forward and regain whatever pain relief you can grasp.

If school is going to make you feel better, that's great! Maybe this is your chance to pursue that. If you go back to school, keep a close eye on symptoms to ensure that the stresses of school aren't making you sicker. a pain journal may be helpful. I don't mean to sound negative aboyt school at all. (I'm the last person to discourage further education). Just take care of your body because it's the only one you've got.

If school helps you get through this time, that is wonderful. If you find it is making you sicker, try to take an honest look at the benefits vs. risks to decide your next step.

As far as the BCPs, I know you said the doc is giving you samples so you don't have to pay for them. Just bear in mind that most BCPs take a few cycles to help with pain relief. So that is something to stow in the back of your mind. (Obviously that is something your doctor or pharmacist could discuss with you in detail if needed).

Crying is VERY normal when under such stress and when hormones may be "off" too. Crying can actually be theraputic in the long run.

As far as feeling weak... your health conditions, mental/emotional anguish, grieving about the infertility, etc. could be contributing to those feelings.

I think reading my friend Alicia'a blog could help with the emotional aspects. Her blog mixes the grief/sadness of infertility and miscarriage with fun/silly stuff and with the beginning of the adoption process. I really think reading her blog could help you get some comfort!

You are NOT a loser or quitter for doing what you feel is best at this time. Please don't beat yourself up. Try to be easy on yourself and not to second guess your tough decisions.

There is always HOPE! No matter what the future holds, your courage, strength (you are stronger than you may realize!), and your persistence in the face of adversity will carry you through this challenging time!!

My thoughts and prayers are with you and your husband!

Sending positive energy your way!

Try to remember that self-care!!

A good belly-laughing comedy can change everything. I know a comedy may not be quite right just now. However, when you are ready to distract yourself from physical/emotional pain, try it.

My husband and I get DVDs from the library down the street (FREE) all the time. We seek comedies first. I'm telling you... that saying "laughter is the best medicine" makes sense to me. Laughing reduces stress hormones and makes you feel better emotionally.

So try chilling out with Hubby in from of a DVD-comedy some night to just LAUGH! It helps my husband and me get through some TERRIBLE adversity.

We have been married 10.5 tears now. We've had therapists (Marriage & Family) come out and tell us that we have made it through MANY things that lots of couples' marriages would not survive. Those comedies help us in the dark times!!

So try to distract yourself from pain when painkillers aren't cutting it. For work, maybe those heatpacks (Thermacare) that you can wear might help manage the pain a bit?

There are lots of option besides drugs and surgery. Keep your eyes and ears open and try what appeals to you. If you are open to trying new things, you may find something amazing.

I was scared acupuncture would hurt. Instead, I wish I had tried it YEARS earlier!!

Whatever you are open to trying (that doesn't cause harm) is worth trying. Ask around in your area... Find out what practitioners are available.

For example, in my area there is a special physical therapy to treat pelvic pain. Maybe that could help you??

There is so much more than drugs and surgery. If only I had known about these things sooner.

I have had 6 laparoscopies and 1 laparotomy (major surgery). I have had great luck with alternative medicine. I just wish I had tried certain things sooner.

Good luck. I will be thinking of you and your husband!!




Anonymous said...

I'm so sorry you are going through this. I know your pain and it is deep. It's not fair. Life's not fair. I wish there was something I could do to help.

Alex said...

Thank you thank you thank you SO much ladies for your support, kind words, and advise! You gals are the greatest! Sometimes I feel so alone because no one around me has Endo and knows what this is like, but then you girls are always here to lift me up and make me smile and feel better.

EJ, I'm going back to Nursing school! Maybe someday you will too! I put it off for so long, but I'm determined now. At least 1 good thing has come out of this!

ReadyGo said...

This post absolutely tugged on my heart. I hope you're doing ok, and I love that you're going back to school...and nursing school nonetheless. I'm impressed!

I'm thinking of you.