Still Processing. . .

Well, yesterday came and went and I had the appointment that I had waited 6 weeks for. I arrived on time for my appointment and 2 1/2 hours later I saw the doctor. He was an older man with a heavy accent. He listened to my history and performed his exam and then he told us what he thinks. . .

• The illioinguinal nerve is definitely involved, but the genitofemoral nerve is possibly involved as well.
• Nerve pain can be self limiting (3-5 years) or it can continue indefinitely.
• We have options: (1.) Old School Theory: Perform a series of 10 (or more) nerve blocks to attempt to break the cycle. This would involve going in every 1-2 weeks for a block. (2.) Perform a diagnostic nerve block and if it gives temporary relief, perform a Radiofrequency Ablation on the nerve(s) which will provide relief up to 6 months. (3.) Insert a Spinal Cord Stimulator to inhibit the transmission of pain from the nerve to my brain, an internal TENS Unit of sorts. This has been proven to work but is VERY invasive and incredibly expensive. And then there is the insurance part!
  

We decided to go with the second option as it the easiest and can provide relief quicker than option one and is less invasive than the third. I left there with very mixed feelings. . . I know that things will happen in the way that they are meant, but I am scared. I am human. I hurt. I am tired. We have a date scheduled for the diagnostic nerve block. . . DECEMBER 8. 2011 - 4 months away. That feels like an eternity, esp when my hysterectomy was 5 months ago. . .

So, while I do not have any doubts in this doctor, I am concerned with (a.) his timeliness and (b.) that it takes SO long to get in for a 5 minute procedure. One thing that I LOVED was that he did not even try to give me a prescription for narcotics. The docs that I have see thus far have and that is not what I want. . . "Fix" one problem, yet create another. . .

While I am disappointed that he does not have a quick fix, I am confidant that we are doing what is best and hopefully following His will in the process. Like my Granny always said, "Lord, I'll make the motions, YOU do the work!"

"Let nothing perturb you, nothing frighten you. All things pass. God does not change. Patience achieves everything."
~Blessed Mother Teresa of Calcutta

5 months. . .

It is hard to believe that it has been 5 months since my hysterectomy. It has been 5 months of trust, faith, hardship, sorrow, joy, and so many other emotions that I did not expect. . .

Here is a recap of all that has happened:

• Thursday, March 3, 2011 @ 0730: my surgery
• Saturday, March 5, 2011: I received my first ever blood transfusion, but not because of the surgery. . .
  
• Tuesday, March 8, 2011 @ 1800: I come home. . . only 4 days late!
• Monday, March 14, 2011: My First 'Bad' Day where I learned that I was not ready for anything!
• Thursday, March 17: 2 weeks post-op and I finished my Lovenox Injections!
• Wednesday, March 23: Seriously, I can't pee!?!?!?
• Friday, March 25: Meet with the urologist and am drilled about why I had to have a hysterectomy at 28. . . a very hard/emotional day and I still have a catheter. . .
• Saturday, March 26: I CAN PEE!!!!!!
• Tuesday, March 29: BIG Slide in the wrong direction. . .
• Wednesday, March 30: 4 Weeks Post-Op doctor appointment. . .
• Friday, April 1: 3 simple letters --- PMS!
• Monday, April 4: A few complications, but I got the okay to travel to MS for my sister's wedding!
• Tuesday, April 12: Back to the urologist because I am having trouble peeing again. . .
• Wednesday, April 13: 6 weeks out and back to pajamas. . .
• Monday, April 18: The pain was increasing with any and all activity. . . Really wondering if this will ever end. . .
• Saturday, April 23: Oh, the crying just does not stop!
• Tuesday, April 26: The ever so dreaded 'are you pregnant?'
• Saturday, April 30: GEEZ ~ My hormones are worse now then they were during pregnancy!
• Sunday, May 1: I was diagnosed with Illioinguinal Neurologia and underwent a nerve block. . . it helped. . .for a bit!
  
• Tuesday, May 3: 2 months out. . . WOW. . . I never thought this day would come!
• Monday, May 16: Intense pain and bleeding send me to the ER. After a few hours, I was sent home on 'bed rest'
• Tuesday, May 24: 12 weeks out. . . plus a list of "I wish I had known's"
• Tuesday, May 31: 3 months out. . . there is no way I could have made it this far without my husband and best friend. . .
• Tuesday, June 7: My first visit with the chiropractor. . . and it hurt!
• Monday, June 20: I made an appointment with a top notch pain med doc. . . August 8 will not be here soon enough. . . AND, I want to teach NFP!!!
  
• Friday, June 24: The chiropractor was causing more pain then comfort, so the mutual decision was made to stop going. . . very mixed emotions to this. . .
• Thursday, July 28: One year ago today, I had the first *serious* conversation about a hysterectomy. . .
• Wednesday, August 3: Well, 5 months ago today I lost a part of me. 5 months ago today, I forever changed. 5 months ago today, I said farewell to the first bed that all of my children have ever known. 5 months ago today, I became a stronger woman. A stronger mother. A stronger wife. 5 months ago. . .

I never thought that this journey would be what it has become. I thought that I had my age in my favor, that this would be a simple surgery and then a simple recovery, but like everything else that has occurred these past 2 years, I was wrong. But in the process of everything falling apart, I have learned and grown SO much. I have rekindled old friendships and made new ones. I have redefined my role as wife and mom, sister and daughter. These past 5 months have been hard, but if I had to do it again, I would not change anything. . .

So Long Chiropractor. . .

Well, after giving it all I had, the decision has been made to end the chiropractor sessions. It was a hard one to make as I so desperately wanted this very non-invasive treatment to work. But, with my pain intensifying with each treatment, we all felt that it was not helping. . .

I am not thrilled about this at all. It leaves me once again discouraged that maybe dealing with the pain will become my new normal. That dealing with this pain will become my life. I do not want that. If this is my path in life, so be it, but there has to be something that can ease it. Something that will allow me to do what I need to do without the intense pain. Like I have said before, something has got to give. . .

So, this now leaves 3 docs since the surgery, that have thrown their hands up and said they do not know. They all agree that it is the illioinguinal nerve and that the nerve needs to be treated, but all of the non-invasive techniques they have tried have failed. All 3 have told me that the doc at U and F is an 'expert' and have sent him my charts/records, but we shall see. . .

I am trying to trust that this is His plan, but honestly, I am having a hard time with that right now. I know that our God is incredible. I know that He loves us beyond what we can dream of. I know that he will never give us more than we can handle, but I have to ask why. Why the pain. I am beginning to understand the surgery, but why this?

Once again, I find myself turning to Saints Cosmos and Damian and Saint Gianna Beretta Molla. They are all great sources of comfort for me. . .

3 1/2 Month's Out Progress Report

Well, I am at about the 3 1/2 month mark. Looking back it seems like I had the surgery SO long ago, but then it seems like only yesterday. . .

I frequently dream about the surgery. About what must have happened. About what the doctors, nurses, and techs did to my body. I know that this hysterectomy was much needed, but in some way, after that dream, I feel almost taken advantage of. In that dream, they always take my uterus and ovary and 'give' it to another women. Was she more deserving of this gift? Did I do something shameful or undeserving and that is why it was taken away? I always wake up after that, but I desperately want to find out the why she was given this gift. Maybe one day I will be able to dream long enough to find out. . .

Physically, I am okay. I still deal with a lot of pain, but that is the nerve pain. I have also gained some weight. Those of you that know me, understand this battle, but (this is for you, Mama!) do not worry. I am dealing. I am avoiding scales like the plague and doing everything to maintain as healthy a body as I can. . . All we need is more issues! I am still losing a great deal of hair and I am hoping that this is just a result of the stress that the surgery put on my body and not a sign of menopause. My energy is not great, but I am dealing with great pain and that takes all of my energy, not to mention, I am a stay-at-home-mom! So, physically speaking, aside from the nerve, I think that things are going well. I still get strange pulls and tugs in odd places every now and then, but that is about it. . .

So, for being 15 weeks and 4 days out, I myself, am rather impressed. Although I thought the recovery would be MUCH faster than it was, I am grateful that I have been surrounded by such great family and friends. I am grateful for those that remind me that God's time is not our time and as hard as that is, we have to accept it and move on. . . And somewhere be grateful for it as everything has a reason. I can not wait to see the why this path was chosen for me. . .

Helping or Hurting?

I have 2 chiropractor sessions under my belt, and the pain has not eased. At my appointment on Thursday, all he did was some stretching and the wonderful neuro stim. There was absolutely no manipulation in the nerve area or any of the surrounding structures as he did not want to cause any further pain. . .

I again left and as soon as I arrived home, I snuggled into my hubby's arm (you know that fabulous spot on their chest where they can wrap their arm around you and let you know that it will be okay?!?!?) and began to sob. They were tears of pain, frustration, agony, exhaustion, etc etc. I know that it has only been just over 3 months since my hysterectomy, but the drama began when I became pregnant 32(ish) months ago and we never expected to be where we are today. . .

So, as I sit here today, I hurt. I hurt worse then I did pre-chiro. Is that a good thing? A bad thing? Or does it mean absolutely nothing? I do not know, but I do know that I can not continue like this. . .

However, I do think that I have come to a conclusion and that is to seek that "second" opinion from the illioinguinal nerve specialist. Even my chiro says that he has never dealt with this nerve (GREAT!), so, hearing from a sub-specialist that we are on the right or wrong track is what I need. At this point, the primary pain docs have thrown their hands up unless I want to spend lots of money on a surgery that may not work and if it does will only provide 50% relief at best.

This Bettter Work!

I am just returning home from the chiropractor and let me tell you, I hurt! He, along with his assistant, pushed and manipulated the scar tissue until I could not bear it any longer. Then we went and did 'neuro stim' (think a TENS Unit with more power). That felt great and I loved all 25 minutes of being pain free, but as soon as they took it off, the pain returned. I was able to make it to the truck before the tears began from the pain. . .

Now, I am home and praying that this will be worth it in the end. I expected it to be intense, but not like this. My expectation was equivalent to the physical therapy I went through after all of the baby drama. That I could laugh through. Right now, I can not pretend to be okay even if I try as the pain is at that level. . .

I am honestly not sure how much more of this I can take. I am tired of hearing the docs say that I am not their average patient. I am tired of them saying they have no idea so go see this other doc. I just want to get this pain to a level that I can deal with. If I am meant to hurt forever, so be it. But, it needs to be at a level that I can tolerate. Not a level that is tearing me apart. . .

Tommorow's Hope. . .

Tomorrow I began the active release treatment from the chiropractor. Going into this, I am scared. I am scared that if I put all of my faith and hope into this appointment that it will not work. I am scared that this plain and simple will not work. I am scared that living with this pain is something that I am going to have to do from now on. I am scared because I am not sure how much longer I can pretend to be brave to everyone.

Over the years, I have learned to mask my emotions or physical ailments. To cover things up. To put on a nice smile and tell the world that I am great. That there is absolutely nothing wrong. It is a blessing when there are those times that I do not want anyone to know and it is a curse, when others do not understand the level of things because I have that 'I am great' smile that appears to be so real, even to those that know me best.

Right now, it is a curse. I want to let my guard down. To truly let in on to the level of pain that I am feeling. To truly let on what the reality of this is. BUT, I do not know how. I am trying to learn, but it is hard. Even the pain doctors tell me that I am tolerating this pain very well. Again, a blessing and a curse. . .

My prayer is, as hard as this is, for God's will. Whether it be for this to work or for us to take the next step of the illioinguinal nerve specialist. Either way, we will know within a few weeks. . .

Really?!?!?

I have been experiencing many things lately that leave me a little perplexed. . .

• My hair is falling out (Thank God I have curly hair so you can't really tell!)
  
• My nails are VERY brittle and breaking all the time
• One side of my belly is bigger than the other
• I keep getting these odd sores that will take forever to heal (One on my thigh right now that has been there for 3 weeks!)
• Oh, and the pimples! I feel like a teenager again!

I am not sure if it is just my body's shock from the surgery, menopausal symptoms, or just me!

My Companion on this Journey!

For the past 2 years, I have used this heating pad almost daily and this is the result. . .

. . . a heating pad that is held together by Duck Tape!

Still Waiting. . .

Well, so far, this nerve block has not worked like the other. I am having very little relief from it thus far. My sincerest prayer is that it has just not had time to stick to the nerve, but in the back of my head, I know that we are past that 24-48 hour period. While I still hope and pray, I am trying to mentally prepare my self for surgery. For #8 in 26 months. Something that I so badly do not want, but at the same time, I can not keep on like this. . .

I feel myself sinking deeper and deeper into a depression. I can still put on my mask and hide it, but inside I am frail and weak. I am not sure just how much longer I can fake that I am okay. That I am dealing with all of this just fine. That life will go on. . .

I look at my 3 precious kiddos everyday and I thank God for them. I thank God that even though each pregnancy came with its ups and downs, that they are still here. They keep me going, day in and day out. I look at my husband and thank God that our lives intersected that fateful day in June 2002. I could not make this journey without him next to me, cheering me on. He has held my hand through each surgery over the past two years. He has wiped my tears when things did not go as planned. He told me that he loved me regardless of the hardships that I brought. With these 4 people, I wake up each morning knowing that there is a journey ahead, but a journey that I can overcome. A journey that we can overcome.

So, as I try and mentally prepare for another trip to the OR, I am reminded that I am blessed. I am reminded that I am lucky. I am reminded that I have at least 4 cheerleaders cheering me on as we all travel this journey. I am reminded that God is in charge. He knew that I would, rather that WE would have this cross to carry. He knew that in the end, we would be grateful and see the why behind all of this. . .

not so done with the surgeon. . .

I thought that I was discharged from my surgeon's care, but, go figure, I was wrong. . .

I had to return to him again today for a 'consult' as he wanted to see how the pain management was going. I also had some concerns about the cuff sutures not dissolving and other issues pertaining to my new body. We chatted for a bit and he prescribed a med (MetroGel) for the other issues. I will return to him in 4 months, sooner if more issues or concerns arise. Also, at that point, if the sutures are still in place, he will remove them.

So, I am nearly done with him, just not completely! This leaves my primary who I see every 4 weeks and my pain management doc that I see weekly in addition to the surgeon that is 4 months away. Praise God that the urologist has been taken off of the schedule and I have successfully weaned off of my smooth muscle relaxers with no problems!

Baby steps in the right direction! Baby steps to total wellness and freedom from the mass of doctors!

2 Months ~ 61 Days

I can hardly believe that is has been 2 months since that fateful day in March. 2 months since that precious part of my body was taken out, never to be put back in. 2 months full of complications that I never expected or anticipated. It has been 2 months full of challenges and triumphs, tears and joys, highs and lows. It has been 2 months that I will not forget. . .

Physically. . .
On the exterior, all of the incisions have healed. I do still get some residual swelling in the afternoon, especially if I have done too much.
On the inside, there is still a lot that needs to heal. The motto 'slow and steady wins the race' is what my body is going by! I never realized just how involved a hysterectomy truly is. In absolutely no way can I compare it to any of my 3 emergency c-sections. Yes they involve the same organ, but that is it. From a surgical standpoint, I am right on track, so much that my surgeon has said that I can be done with him unless there is an issue that requires his assistance! That leaves me with my Primary, Urologist, and Pain Doc. The bladder issues are resolving. I am weaning off of the smooth muscle relaxer and so far, so good! My body is adjusting well! The illioinguinal neurolgia issue is NO fun. The nerve block has worn off leaving me in more pain than I was prior. . . UGH! So, I return next Tuesday for another nerve block. . .

Emotionally. . .
I am still a mess, although it has calmed down somewhat. My doc thinks that my remaining ovary is adjusting to making enough hormones. He also added that, I need to mourn. A big part of me left. . . Although a uterus does not define you as a woman or a mother, it is a part of you. Without it, you lose the gift of your fertility and I can not think of any female that did not dream of being a mother one day. . . Do not get me wrong, I am absolutely beyond grateful for the incredible gift that I have been given with my 3. I am surrounded by people that have lost babies at all stages of pregnancy, from the the first few weeks all the way to 30+ weeks. People that can not get pregnant. People with great struggles with this incredible gift. So in absolutely no way am I ungrateful, I am just mourning. I am just being human. . .

So, all in all, this past 2 months have not been what I expected. Had you told me 2 months ago what would happen in the 61 days that followed, I would not have believed you. . . From the week long hospital stay to the blood transfusion to the urologist to the nerve blocks. . . Part of me wants to go back and undo all of it, to have my womb back along with everything it brought with it. But then a bigger part of me want to see the WHY behind all of this. . .

1 Year?!?!?!?

I have ready in MANY places that this surgery will take up to 1 year to recover from! The majority of restrictions will be lifted at 6-8 weeks. Then you will be about 75% recovered by 6 months, with the remaining 25% be mostly fatigue. Then by 1 year, you should be 100%. . .

How come when you hear about a hysterectomy, all you hear about is the initial 6-8 weeks?!?! I would have felt MUCH better about this hysterectomy had I known the up to 1 year part!

Helpful Website

I have found the Hysterectomy Toolbox website as a great resource for information. Some of the information in a bit outdated, but good for the most part!

Back to Pajamas. . .

I have decided that, in order to remind myself that I need to rest and let my body recover, I am going to return to my pajama wearing days. I desperately want to regain all of the ground that was lost last week. I want to feel like I am making progress instead of staying steady or sliding backwards. I need this physically and mentally. . .

Yesterday was one of the lowest days since the surgery. It was a day where I regretted the hysterectomy greatly. I questioned the decision. I could not get it out of my mind. It was a hard day. A very hard day. . .

It is hard to believe that tomorrow will be 6 weeks. If I were working a paying job, I would be able to go back and that, I can not imagine. I can hardly function for a few hours, much less ALL day. Then, with the amount of pain I am in now, there is absolutely no way. . .

So, I have made a plan. I return to my surgeon next week. Until then, I have canceled all outings (except for the kiddos well child visits on Monday). I plan on staying in my pajamas. Playing games with the kiddos. Eating cereal for every meal. Just taking it easy and trying to feel better. I am tired of setbacks and I am going to avoid them at all costs!

I pray that this decision will help as I desperately need to begin the process of moving beyond the surgery, mentally and physically. . .