Another Month. . .

As May ends and June begins, I am filled with many different and varying emotions. This journey has had so many twists and turns and ups and downs that were never expected. There are a few things that I hold onto, and even though my emotions are all over the place, I know the following to be true:

• That God knows all of this. He, and only He, knows when the nerve pain will end. He knew that a total hysterectomy would happen when I was only 28. He knew all of the complications that would occur.
• That my husband will stand by my side. That our vows of in better and worse, in sickness and in health would truly be put to the test these past 27 months. And although this can and does put a strain on us, we are learning to work through it and, praise God, we are coming out stronger than ever!
• That my faith and trust would falter. That I would question the why behind it all. That I would feel anger and resentment for the path that was chosen for me. But in the end, God will help me see the light and those feelings do not last for long.
  
• That my heart would ache one minute and be glad the next. And not glad in regards to my infertility, but glad that I am no longer plagued with all of the other issues that were present just 3 short months ago.
• That my need/desire to help other women appreciate the gift of their fertility would become a priority.
• That nothing will go as planned.
  

In all, it has been a trying 3 months, with this month being one of finding answers to the problems. Trying to figure out what is causing the pain and then creating the solution. Next month, we will begin the chiropractic care in hopes that it will help with the nerve pain and break up the scar tissue. So, onward we go in the hope to find answers. . .

(Me and the kiddos!)

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!

Support System. . . (VENT)

I wrote a post a while back about how I felt my support system that had been surrounding me was crumbling. It took time, but it was rebuilt, although not nearly as strong. I am not sure what is happening, but once again, my extended support system, is falling apart. Those that would listen as I cried are not there. Those that knew how hard this is emotionally and physically are not there anymore. As a result, I am left wondering what I did wrong. What happened that made them leave me. What was it that made them silently turn their backs. I know that this journey is hard and long, and I am sure that makes those that were once so close not want to wait around anymore, but I need them and I am not sure how to make them see this anymore. This short race has turned into a marathon, but I still need encouragement to make it to the finish line. .

Then there are those that know how to hurt me to the core. Those that make comments that make me want to curl into the fetal position and sob. Those that have absolutely no idea how badly I need reassurance that things will go back to the way they were and that this will not be my new normal, my families new normal. . .

Spiritually, I am feeling much better. I know that the why behind this will come around. I know that there is a reason for this. Even in the middle of the night when the pain awakens me from a dead sleep and brings me to tears from the severity, I can feel HIM holding me and whispering that I will get through this. In my moments of great need, when all is quiet and still, HE is there. That has done me great good. Every night as my husband, kiddos, and I settle for our family rosary, the children's special intention is for mommy's tummy. That mommy will not need another operation. Then when bedtime arrives, they not only give me hugs and kisses, but they will kiss my belly boo-boo too!

Just like before, I know that this support system will be rebuilt. I know that it is not a matter of if, rather when. With time, the hurt will fade. With time all of this will be but a distant memory. . .

Could this be it?!?!

I had my meet and greet with the Chiropractor today. After he took my history and performed his exam, he told me that he believes that he can help with the nerve pain! During his exam, he noticed that there was a lot of tightness in the lower right quadrant, which is most likely scar tissue from the 3 c-sections and the other other abdominal surgeries. The doc is wanting to use a technique called Active Release to break up the scar tissue and help loosen the muscles. According to him, it will take about 2-3 sessions a week for about a month to get over this. . .

I left there feeling like there was light at the end of this tunnel, much like I did after my first appointment with the pain doc. But, while I am feeling hopeful, I am trying to not get my hopes up in case this does not work. Now, do not think that I am thinking negatively, I am just tired of having my hopes crushed. My prayer is that this will work and I feel certain that this will, but I have moments where I become scared that will not work and I will be left hurting again. As soon as they come though, I try to put those moments of doubt aside, and remember that this could be the answer and the solution to the pain that has been going on for so long. . .

I return in a week and a half for my first appointment and we are anxiously awaiting it. . . One of the great things about this guy is that he has night appointments so Daddy can spend some quality time with the kiddos! All around there are positives. All around things are seeming to work out in the way that they are meant to. I can truly see things happening and it is incredible. . . My faith has been renewed and I feel strong in mind, body, and spirit once again!

God Speaking. . . AGAIN!

I turned on the computer this morning to check e-mail and make my various rounds and came across this quote on a friend's page about her health battles. I must say, I can not imagine facing a fraction of what she faces on a daily basis, and yet, she remains so strong. Rarely does she let on about her frustrations, yet they have to be there, how could they not be. Anyhow, here it is:

"God never promises to remove us from our struggles. He does however promise to change the way we look at them."
~ Max Lucado

Thank you, once again, for this reminder. My optimism has improved and I know that before I know it, this will be but a distant memory. I will look back at this time and understand why HE chose this path for me. My head and my heart will understand and be at total peace with this, but until then, HE will be there and hold my hand and guide me through this.

12 week Progress Report (Some TMI)

I can hardly believe that in just over a week, it will be 3 months since the surgery. I must say that all of my pre-op fears of feeling less of a woman, less of a wife, less of a mother were incorrect. I am absolutely no less of a mother, wife, woman than I was 3 months ago. . . And, all of the physical issues I was battling prior have all diminished! The only remaining issue is that stubborn nerve, which is secondary to the primary issue and, I pray, will be resolved soon. . .

I do wish that I had been told quite a few things prior. So for anybody facing a hysterectomy, here are some things I wish I had been told about that I personally experienced:

• Fatigue! There will be a lot of it and it will last for quite a while ~ I still must take a 'rest' midday.

• Urinating can be very difficult and painful. You may experience some very painful bladder spasms, so do not let you bladder fill up.

• Having a BM in the beginning is incredibly painful as all of those structures have been manipulated and man handled!

• Your belly will swell. Make sure to have plenty of elastic waisted clothes and/or dresses. And just when you think you have passed that point, it will come back full swing!
  

• No matter how careful you are, you will gain weight.

• You will experience many dramatic mood swings even if you have 1 or 2 ovaries remaining.

• If your cervix is removed, you will notice a change in odor and discharge when the cuff stitches dissolve. And it can be unpleasant! (At 12 weeks, I am still waiting for 1 to completely dissolve. . . Frustrating!)
  

• Regardless of the cervix, you might experience sharp, almost stabbing pains in your vagina. They will take your breath away. . . Even at 12 weeks out, I still have this!
  

• Because of the change in PH with a hysterectomy, you might experience many yeast infections which you can not treat with external creams only pills!

• Nausea ~ I experienced this for the first 7 weeks post-op. . UGH!

• It takes up to 1 year for your body to completely heal from a hysterectomy! I have spoken to many women who have had the 'swelly belly' and fatigue for a year or more. . . I sure hope that mine does not last nearly that long!!!
  

In the end, I am grateful that I had it. Like I stated earlier, all of my issues prior have been completely resolved. The pain from the endometriosis and adenomyosis are gone along with all of the awfulness associated with them. No more periods that require a blood transfusion afterward. No more of so many things that I need to be thankful for and that I need to focus on. . . Now onto that stubborn nerve!

Trials and Tribulations

I came across this passage and began weeping:

James 1:2-3
" Consider it all joy, my brothers, when you encounter various trials, for you know that the testing of your faith produces perseverance."

How incredibly perfect is this? Embrace your trials and tribulations. Turn to them and do not run.

I read this and it was one of those moments where God was speaking to me. HE was telling me that this is hard and HE knows that, but in the end, things will be better. With perseverance and time, HE will show me the why behind all of this. . .

Babies, Babies Everywhere!

**Please understand, this is not taking anything for granted, I am just having emotions. I am truly loving every minute that I have with my husband and children but I am human and as a result I have emotions that are real and I choose to express them.**

It seems like everywhere I go, there is a pregnant mama. Every time I turn around, there is a happy family. Enjoying every moment of life. They appear to be satisfied with what they have. Satisfied with what God has given them. . .

I on the other hand, can not find that 'satisfaction.' I have tried. I have looked deep within. I am begging God to allow me the peace that this is my family. The comfort that this was and has always been HIS plan for me. I want so desperately to understand why I am only blessed with 3 children. Why HE has trusted me with this path. The why behind it all. . .

I want HIS time to be MY time. I want HIS will to be MY will. But it feels like we are on polar opposites right now. He says wait while I am a baby throwing a tantrum because I want it now, now, now. . .

How do I connect the dots? How do I make my heart and head understand that His timing is not my timing? How do I just let go of it all and be at peace with everything? How do I do any of this? How do I move past this point?

I have turned to prayer and my faith. I have spoken with many. I have done so much to try and figure this out, but I am at a total loss. . . Is it exacerbated by the pain I am in and all of the frustrations that accompany that? Or maybe my hormones trying to figure this out? Who knows. . . The 1 thing that I do know is that I am not alone in this. Even when I am at my weakest point, there will be a little reminder that HE is there. HE is guiding me through this. HE is holding my hand every step of the way. . .

Options. . .

Since the phone call came on Thursday, I have cried, laughed, screamed. . . had so many emotions that I never expected. The idea of hurting like I am indefinitely is not something that I can handle. It has been over 2 years now. . . BUT, thankfully, I have a husband that will stand up for me. He will call the docs. He will call the insurance companies. He will not take no for an answer and he will keep fighting for me until something happens or I am better!

We are now looking at 4 things that are within our reach, we are just waiting for a few phone calls and much more discernment before any decision(s) is made. These possibilities include:

1.) Going ahead with the surgery. All parties involved have given significant discounts, leaving the surgery within reach, but before we commit to spending that much, we want to try a few other things and make sure that this is the 'right' decision.

2.) One of the PA's at my docs office suggested chiropractic care, so this is something we are looking into.

3.) Accupuncture. . .My wonderful husband has researched this one extensively and has read some truly amazing stories. So, we will see!

4.) A visit with another pain doc for a second opinion.

So, mentally, I am feeling better. I am over the crushing news of Thursday and trying to move on, mentally and physically. I have been trying to go on with everyday life, but I am paying for it greatly as the pain has been very intense these past two days. While I want to go back to everyday life, I am physically unable to and that hurts. This has gone on for long enough. . .

So, once again, we wait and pray for the right answer or answers. We wait and we pray. . .

The Phone Rang. . .

As I sit here sobbing, I wanted to let everyone know that, well, nothing can and will happen. There are no doctors that will perform this other surgery as it is "too risky" and with my luck, that will be more than true (and if it is that risky, I do not want it!), and the original surgery to freeze the nerve, although covered at 100% 2 months ago, is now considered experimental?!?!?! Seriously, how can something that has been proven to work and has been covered entirely prior, now be considered experimental? It works. We know it works. It is an easy fix --> Go to sleep. Make some cuts. Freeze the nerve like you would a wart. Wake up. Go home. No pain. It is my one hope of having minimal pain. I have done everything else. Had tests and procedures. Tried meds, all to no avail. Of course, I can pay for then entire 5 digit expense out of pocket, but we are not wealthy by any stretch of the imagination.

So, seriously, who knows more, some ass sitting at a desk who has never laid eyes on a patient writing new guidelines because he is scared of what will happen with private insurance or your doctor, the one who has treated you. The doctor that has laid his/her eyes on you. The doctor that has reviewed your medical charts and your test results. The doctor that has held your hand as you sobbed as you did not know how much longer you could put your family through the hell of dealing with a mother and wife in chronic pain. (For those of you reading this, I am not saying that I am in danger, just in the throes of despair and dealing with pain for over 2 years)

Waiting for the phone to ring. . .

When we left the doc's office yesterday, we were told that we would hear back from them by today at the latest. Around 3, I called them and left a message for someone to call me back with the status ~ either insurance denial/acceptance or did we find a doc for the other procedure. I heard nothing back. . .

I am trying to keep my mind from going straight to the negative, but I am having great trouble with that. My mind is just going crazy ~ Did the insurance flat out deny? Could they not find a doc to do the other surgery? Am I stuck with this pain forever? What is going to happen to me? My family? My marriage? How much more can we take? WHY?

So, here we are stuck for another day, left wondering what is going to happen. . . I know that there is a reason, but it is becoming difficult to pick my chin up. It is getting harder to put on that happy face. It is just difficult. . .

INSURANCE ~ UGH

This is merely a vent, so beware!

I go to the doc today to schedule the nerve surgery. My husband takes off work so he can hold my hand as we have the discussion of an 8th surgery in 26 months. We arrive and pay the co-pay, are called back and vitals taken, then wait. We go through the entire thing with the PA and she gives us all of the details of the upcoming surgery and then it happens. . . she looks up and sees our insurance carrier. She dismisses herself from the room while Robert and I sit there not knowing what is happening. When she returns, she informs us that our insurance does NOT cover this surgery. The one thing that we know WILL help, insurance does not cover. There is another riskier surgery, but the problem is finding a doc willing to perform it. . .

So, great, where do we go from here? We are going to go ahead and act like insurance will cover the original surgery. This means, I had had my pre-op appt today and we are going to submit it to insurance and just pray that it slips and gets approved. If they decline it, we will try and fight it. Also, while we are waiting, we are going to try and find a doc that will perform the other surgery. . .

I am devastated. We truly had put all of our faith and hope into this surgery and now that it might not happen is such a blow. I need relief from this pain. . .

Hi Ho, Hi Ho, It's Off to the ER I Go. . .

So yesterday was a very interesting day. . .

Friday afternoon, I began having some rather strange and intense pain. Then by Saturday, the pain was continuing and was actually getting a bit worse. On Sunday, it was awful and in conjunction with the pain, I was experiencing many other symptoms that warranted a call to my doc. (I am leaving out details on purpose!) . . .

Their exact diagnosis was that I had a stomach bug! Um, NO! I know the difference between a stomach bug and what I was experiencing. So, I called my other doctor (yes I have TOO many docs on board!) and he said that in absolutely no way is this normal and to get to the ER. . .

Well, after figuring out some mild logistics, we were on our way. Upon arrival, I was quickly whisked through triage and into a room. Changed into a gown. Vitals taken. IV started. Labs Drawn. Visit with the PA. And a few others things all within about 30 minutes!

The PA ordered some meds and within a few minutes of administering one of them, I began to have an allergic reaction ~ GREAT! So, this brought back in my nurse, the PA, and now the ER Doc. Then more meds. More tests. More waiting. Etc. Etc.

By midnight, I was told that I would be discharged, but I now have to follow up with a GI doc. There are a few things that were stated, the most prominent being a Peptic Ulcer that is/was bleeding. As of right now, the bleeding has stopped and the bloating is diminishing. If anything gets worse, I am to return to the ER or my doc right away. . .

So, here we go again. At this point, if I do not laugh about any of this (which by the way hurts to do!), I would be in a world of trouble. . . This is getting ridiculous and we could honestly use prayer. Not just for me, but for my family. My husband. My kiddos. My extended family. All involved. . .

Because he loves me. . .

My wonderful husband walked in the door with these tonight!

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!

Waiting and Praying

I am just returning from my 2nd nerve block. There are a few things about this one that are quite different from the 1 prior. . .

1.) I was not able to answer my docs questions during this one as the sensations were SO different, not pain, just different. My right side felt this deep ache and heat like sensation. After a few moments, it felt heavy as well. . .comparable to the spinal during a c-section.

2.) My doc went "deeper" into the nerve causing my entire right leg to lose feeling, hence the sensations above! When he finished and I went to get off of the fluoroscopy table, I nearly fell flat on my face, but thankfully my doc and the tech were right there to save me. . .(I knew that my leg felt funny as I went to get off, but I thought that I could still feel it!) They brought in a wheelchair and I had to sit in that for the next 90 minutes until I was able to walk enough to get out of there! 4 hours later, it is still numb, but I am able to move it a little better. . . The great news is that until about 30 minutes ago, I felt absolutely NO pain! WOO HOO!

3.) This is the last nerve block they will give me. . .

So now, I sit patiently and wait for this one to work. It will take about 24-48 hours for the steroids to begin working. Once they do, I should get some relief and hopefully this time, it will last because if it does not, I will have to return to the OR* for the 8th time since the baby was born 26 months ago. . .

Waiting and praying is what we do for the next week until I return to the pain doc. Waiting for the steroids to work and praying that they stick. Even a simple surgery is not what I want. I do not think that I mentally could do another surgery, but physically I need relief. . . So waiting and praying. . .

*To my understanding, this surgery would be at an outpatient surgery facility. After I am sedated, they will make one, possibly two, incisions similar to that used to insert a laparoscope in order to reach the nerve. From this point, he will "freeze" the nerve to provide relief. I will go home and be pain free!

It's Still Working!!!

I have PMS again!!!!

Even though last month I knew that my remaining ovary was working, I have still been having many symptoms of it not ~ Hot flashes, mood swings, etc etc. So, it has been in my head that maybe it was shutting down and not only would I have had a hysterectomy, but I would also be going through menopause at 28. . . NOT something that I want. . . But when I woke up this morning and wanted a giant chocolate bar for breakfast (I did not indulge!), I knew what was going on!

Now, I still have the mixed emotions that I had last month, but I know that with time, all of this will get better. . .

4 Generations of Women

This picture was taken last year at my older sister's wedding. It was the first time for my mom to be present with her mom, daughter, and grand-daughter. We duplicated it this year at my little sister's wedding, but our personal camera's picture came out a bit blurry. . .

Are they ALL yours?!?!

I was out with my 3 the other day when I was asked if they were ALL mine (emphasis on the ALL!). . . I quickly turned around to see if this 70+ year old gentleman was talking to me and sure enough he was. I quickly gave him the response that my mother always used: "They are. Aren't I blessed?" He proceeded to tell me that he was one of 11 and that he never sees families with more than 1, maybe 2 children.

This little comment was the highlight of my week. I am sure that I had quite a cheesy grin on my face as I walked away!

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!

Well. . .

Well, the nerve blocked worked. Notice the past tense? I am back in a lot of pain. . .

Friday, I felt the best I have since the surgery and as a result, I overdid it. Totally overdid it. (My kiddos had their first ever camp out, so I put the tent up in the backyard. It was not hard to assemble, but hindsight is always 20/20 and I so deaperately want to be able to do everything that I once was. . . )So, I was not surprised when I was hurting a good bit Friday evening and then again Saturday and Sunday all day. Well, here we are Sunday evening, and I am hurting WORSE today then I was then, and it is the same pain. . .

I guess that the good news/bad news is that I know what the pain is. I know how to get relief, I just do not know how to keep the relief. I return to my pain doctor in a week, and I will address this with him at that point, as well as the left illioinguinal nerve area. . .

I am very grateful that I had nearly 96 hours of relief. The relief showed me what it is like to be human again. What it is like to feel like a wife and mother without laying on the couch under my heating pad like I have done for 8 weeks now. . . I actually really got dressed everyday, and not just in sweats! I feel that this will be a week of "bum" clothes and rest, and I am somewhat okay with that now. I know that there is light at the end of this tunnel although I am having trouble seeing it again right now. . .