Emotional Rollercoaster

I am a mess!

One minute I am sobbing, while the next I am laughing! One minute I am sitting nicely calm, cool, and collected, while the next I have to walk away from the situation or I will absolutely blow a fuse! What in the dickens could be going on?!?!?!

I have one remaining ovary, so could that one ovary just be adjusting to making enough hormones for both? Is my depression worsening? Is it all of the above? Who knows. . .

What I do know is that something has got to give soon. I can not continue with the non-stop crying or mood swings. . .

On a better note, the nerve block is appearing to help. The pain was VERY intense Wednesday, as predicted, and got a little better Thursday and Friday. Today, it seems to have increased a bit. I am hoping that it is not the steroids wearing off and just a result of overdoing it yesterday. . . Time will tell!

I am also realizing, that with the lessening of the pain on the right, that I am having the same pain on the left, although not nearly as severe. At least I know what it is though, and it will be an easy fix. I return to the Pain Management doc in just over a week and will bring that to his attention!

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 Some of the information in a bit outdated, but good for the most part!

My Blessings

I am beyond grateful for these 3 precious blessings that God has given me. Although it is not the family that I envisioned for myself, these are the children that He knew I would carry within. . . And while I am beyond grateful for the gift that I was given, the gift that some may never have, I still mourn what I will never experience again. I know that the pain will get easier. I know that I will realize over time WHY this is my cross to carry in life. I know that HE and HE ALONE knows the reasons for this and I must fully trust in that. . .

Are you pregnant?

I was asked this question for the first time today. I was able to laugh it off with the tech that asked me while taking my vitals and tell her no I just had a hysterectomy, but inside I was crying. She felt bad, so I did my best to hide my feelings. . . which I have gotten very good with around those that do not know me well. . . If you know me, you know when I am lying!

Although this was the first, I am sure that it will not be the last. At least when I had my uterus, I was able to say no or I hope not, but inside I knew that if medicine improved and could make pregnancy safe for me and our child, that we would have another. . . But now, now I do not even have that opportunity. . .

Tonight, my emotions are raw. I am so grateful for all of my children. I was given an opportunity that some may never have, but what I had imagined and always dreamed, will never be. I thought my heart had accepted this, but today proved that is not the case.

I was given a copy of the MRI pictures from last week and although I have, for the most part, no idea what I am looking at, I know what is not there. I never thought that God would only bless me with 3 children. I never thought that at 28, I would have a hysterectomy.

I must come up with a classy way to answer this question that will not break my heart or cause me such distress as I am not sure that I can handle another day like today. . .

Missing My Family

When I started this blog, I promised myself that I would be honest and open about my feelings and emotions. That I would not hold back. I think so far, I have done that. . . But now, I am having some very real, very hard emotions. I am not wanting to put them out there because I do not want to hurt anyone or make anyone feel guilty. My heart is being pulled. . . But, I need to get it out there. . .

I live where my in-laws live. They are great and I love them dearly. But, all of them work. All of them have busy lives. All of them are busy dealing with there day to day. . .

I want my family. I want my mother to come over and sit with me. I want my sisters and sister-in-law (wink, wink!) to come over and help me. I want my brothers and brother-in-laws to come over and play with my children and bring their dogs, guitars, and juggling skills. I want my father to come over and talk with my husband and let him know that his feeling and emotions are okay. I want MY family. I want this. I want this today more than I have ever wanted it. . .

I watched jeopardy tonight and there was a question about heffalumps. I immediately went into hysterics. . . When we had just come home from the hospital with our oldest baby, my oldest sister, brought him into his tiny room and talked to him all about these mystical creatures from Winnie the Pooh (although there was no Winnie the Pooh in his room!). . . He slept the entire time, but I vividly remember sitting in my bed listening to her so lovingly tell him not to be afraid of them. . .

So, Mama and Papa, Rachael and Bret, Michael and Shelley, Clare and Will, Maura, Mollie, and Joseph, I miss you. I miss you greatly. I miss the help and comfort you could provide at this time in our journey. I miss it all. . .

I love you all. (This is still missing a few! I LOVE my big family!)

New Treatment Plan

I went to my appointment with the pain management doctor this afternoon. I absolutely expected it to be a whole in the wall with a crowded waiting room and for the doctor to give me some narcotics and send me on my way. . . Boy was I wrong!

We sat in a nice waiting room for all of 10 minutes before we were brought to an exam room. The tech had just started to take my vitals when the doctor walked in and began to take my history. . . I was impressed! The doctor did his exam and had me do a few tests. After he finished he looked at me and without any hesitation told that I had Illioinguinal Neuralgia.

Basically, when they inflated my belly for the surgery, the hernia graft that was placed last September, moved. When my belly shrunk, the staples that are holding the mesh in place irritated the nerve. Things were getting better when I was able to rest and take it easy, but when we went to MS and then the following weeks chaos, the nerve became rather umm, pissed off and has remained that way since! He explained it so well to us and answered all of our questions. . . I always get such great doctors! (Except that one day at the urologist!)

So, the new plan is for me to go in tomorrow afternoon for an Illioinguinal Nerve Block. This may have to be repeated a time or two, but we are hopeful that this is it. . .

Today at the doctor, my husband had to tell me to calm down! I was SO incredibly excited that someone believed that I was in pain. That someone did not look at me and think that I was crazy. I was grateful beyond words.

Tonight, as the reality of this diagnosis sinks in, I am scared. For 2 years, I have been hurting. For 2 years, my hopes have been crushed. For 2 years this vicious cycle has gone on. . .

I am scared to get my hopes up that this will work as everytime I have, they have been crushed. Everytime I thought something would be easy, it has not been. . . I want and need this to go as planned. My husband wants and needs this to go as planned. My family needs this.

Please say a little prayer, wherever you may be, around 2 tomorrow that all will be well. That this is the answer to our prayers. That this suffering will end. . .

Crying

I have found, that over the past 51 days, that I am crying a lot more. I thought that I was a crier during pregnancy or when I was feeling down, but now I will cry at everything and anything. Well, not the sappy stuff, like Publix commercials or the like, but at the normal daily occurrences. . .

When talking with my sister today, I cried because I was talking about crying. I cried when my friend told me that she enjoyed an early Mother's Day outing with her mother. I cried as I read the St. Augustine Catholic. I cried when my oldest came up to me and kissed me out of the blue. I cry when my youngest tries to tell me knock knock jokes! I cried when my daughter told me I was beautiful. I cried when my husband brought me a diet coke! I am crying now as I write about this. I will cry at everything!

I wonder why this is. . . Could it be my body adjusting to having 1 ovary to make the hormones. Could it be that I have always been a crier, it has just intensified tenfold since the surgery. So many "could it be" possibilities, but for now, I will just accept that I am a crier and I will make sure to always have a tissue in my pocket and waterproof mascara on! :-)

Moving Along

Well, things are moving rather fast. I had my MRI yesterday and I have my appointment with my pain management doctor on Monday. . .

I am extremely grateful that there is very little downtime between appointments as I need to see progress. My body is tired from all of these bad days. . . From all of the craziness of the past two years. . .From all of the ups and downs. . .

Last Monday when my doctor mentioned a possible trip to the OR, I fell apart. That would make trip #8 in 25 months. . . I was so pleased when it was not mentioned on Wednesday because if it came down to that again, I am not sure that I could agree to another surgery. I do not think that I could agree to anything at this point that could potentially cause me anymore downtime or possible setbacks. . .

This journey has got to end. I need to get my life back. I can not keep living in bed or on the couch, in my pajamas, and under my heating pad. My children need their mother. My husband needs his wife. I need my life. . .

When I gave birth to my little one at a mere 33 weeks pregnant, I never thought that I would still be struggling. Yet here we are, 782 days later, and I am still struggling to recover. . .

I pray that on Monday, my new doctor will have some answers. That maybe s/he will be able to come up with a plan to address my pain. That all of this will end. Please join me in this prayer. . .

Week 7 Post Op Appointment

I had my 7 week post op appointment. I am truly grateful that my husband was able to come with me, as I desperately needed his love and support. Also, we could not have done any of this without the help of my incredible friend and soon to be mommy, Katrina, who watched the kiddos today (and SO many other days!). Thank you to both of you as I would have been lost without either of you by my side throughout this journey. . .

My appointment was at 8:30. We went in with a list of questions and concerns. He first did his exam and was very pleased with how everything looks. Things are still healing, but I am right on track. We were all excited that at least 1 thing is going right! Then we went in with my new issue of this pain. He palpated my abdomen and asked questions. After some discussion, the decision was made for me to have a pelvic MRI and to see a pain management doctor. The process for getting all of this done has begun and we are praying that it will not be much longer as the pain is nearly unbearable.

All in all, it felt good to leave there with a plan of action. For now, we wait for the MRI and the referral to the pain management doctor. We will also pray that this will hold answers. I need to get back to normal. To not have this pain. To be the wife, mother, sister, daughter, etc that I know I can be.

Day # 48 Progress Report

It is hard to believe that it has been 48 days since my hysterectomy. 48 days since a precious part of me was removed. . .

Emotionally, these past 48 days have not been as hard as I thought. There are days where I cry over what is gone. What I will never experience again. What I wish was still a part of me. However, those days are not as often as I thought they might be. Being around women who are expecting is not difficult like I had imagined. But, being around newborns is and that is not something I was prepared for. Honestly, my biggest emotional struggle since the surgery is dealing with the complications and how they effect my spouse, children, extended family, and those close to me. I feel guilty, although I never caused any of the complications. Emotionally, I am struggling greatly with all that has not gone the way we had hoped. . .

Spiritually, these past 48 days have been eye opening. He has shown me over and over that He is in control. That this is His plan and not mine. That this recovery will take place how He wants it and not the way I do. I have found myself clinging to my faith. Clinging to the Rosary and other powerful prayers. I have also been human and have found myself, at times, questioning His will. Wondering "Why Me?" Trying to figure out why He wants me to travel this journey. What He wants of me. What He is teaching me. I am trying to stay open to this and follow His lead with wherever this may lead. . .

Physically, these past 48 days have been difficult. Very difficult. I was not expecting any complications or setbacks. When the hospital stay kept getting longer and longer, I accepted that this would be the only complications. When I came home, things were great. I hurt and was nauseated all the time, but I had just had a hysterectomy. Then as the days passed and the pain and nausea remained, I began to become more flustered. Then at week 3 post-op, I became unable to urinate. After 5 days with a foley catheter, I was finally able to potty on my own! After getting past this bump in the road, we traveled to MS, a trip that I would not have missed for any reason. This set me back in the recovery many days, maybe even a week. I was hurting a great deal. Shortly after we returned home, things went from bad to worse. I was again having trouble urinating, so I had to take more meds again. Also, my pain reached the unbearable level. Whenever I moved, it felt as if something in my lower abdomen was ripping. The pain is horrible. Thankfully, we have a plan in place to tackle this . .

So, here we are at day #48 post-op and I have so many emotions. I have learned so much about myself during this time. I have learned about the generosity of others. I have learned about true friends. I have learned just how incredible the love and support that my husband shows towards me is. I have learned how wonderful my children can be, especially when they pray for mommy's tummy to feel better. Looking back, I would have loved for this surgery to have been simple and easy, but I would not change a thing about it. Without the trials and tribulations that this surgery has provided, I would not have learned all of the lessons that I have. . .

The Never Ending Recovery. . .

This will be short and sweet as I am not well. . .

Things are not improving as I had hope. The pain is increasing daily. . . I am okay when I am resting, just achy/mild pain, BUT, as soon as I get up, things get bad fast. It feels as if something in my lower belly is ripping. The pain is terrible. I went to my doc today and will return on Wednesday. I am praying for answers. I need answers. My family needs answers. . .

Prayers. . .

I need prayers. . . My family needs prayers. . .

For the past 11 days, my progress has been sliding backwards. My pain has increased and my energy has decreased. We all thought that by week six post-op, that I would be significantly better and for that not to be the case is very disheartening. . .

Robert and I are both frustrated beyond belief. Not to mention, it is truly beginning to hurt the children. Today, my oldest told me that he is SO ready for my tummy to be better. . . My eyes filled with tears as I told him that I did too. . .

The doctors chose the DaVinci Method because the recovery is so much easier. . . If this is easy, then I want to know what the abdominal hysterectomy is like because this is awful. . . I am finding myself questioning this decision. Maybe I should have canceled the surgery after my doc scheduled it. Maybe I should have waited longer. Maybe. . .

I return to my doctor on Wednesday and I hope that by then, I am better then today. I have to be better. I need to be better. I must be better. . .

Words of Wisdom

I sent a dear friend, who happens to be an OB/GYN, an e-mail yesterday before I bothered my doctor again to see her thoughts on this incredible increase in pain, etc. We had spoken at the wedding and before the surgery about the plan. She knew about as much information as my doctors. . . And, she knew my hearts desire to have more children. . .

She wrote me back with some very sound and wise advice:

I think I would wait a week and see how the pain level is then. Take as much pain meds as you need to stay comfortable. Last week was quite a marathon for you that soon after your surgery - not foolish (who would miss a sister's wedding if it was remotely possible?) but definitely physically challenging. The fact that the pain is stable sounds reassuring. If it gets worse or has not improved in a week, yes, I would get back in touch with your gyn surgeon. Your bladder problem is unfortunately not rare after hysterectomy. The bladder is intimately attached to the front of the uterus and must be carefully dissected away from it during the hysterectomy. Bruising commonly occurs, and the bladder reacts with muscle spasms. This, too, shall pass. (Have you been praying for patience lately?!!) Yes, rest, and don't plan on doing anything you don't have to for another month. And even then, I doubt you will be back to full speed until 6 months from the surgery. I think you absolutely made the best decision by having the surgery now. The surgery would only have been more complicated had you waited, since endometriosis gets worse with time, until menopause, that is, and that's 20 years away!
You really looked great, and your little ones are so beautiful. I think it's miraculous you were able to have three babies with all that endometriosis. I keep you in my prayers.

I sent this to my husband to which he responded:

You know – I keep hearing the same thing…. We’re really lucky to have 3 children. And they really are beautiful children, too. I mean, most kids are just ho hum… but, ours are absolutely precious in every regard (probably because they are all so small for their age). I can’t imagine a life without Robert, Hannah or Wesley. And, I can’t believe how blessed we are. God has definitely been good to us – I think He has favored us for our faith and service to Him that was predominant in our pre children life – your walking and passion for the faith, my involvement in different ministries. I think if we were just average – we would have one, possibly. I think our large family, while not as large as we foresaw, is absolutely perfect! Considering all that you have been through and your bodies capabilities, this IS a large family. And God has been so good to us! Besides, we could have only had one more before needing a mini bus. And I just bought that van…..

I am learning with this, that God is putting people in my life at just the right time. They are speaking the words that I need to hear. They are encouraging me and keeping me going. When I feel myself sinking into that dark place, I try and remind myself that if God brought me to it, He will bring me through it!

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. . .

Urologist Follow-Up

I had another follow up with my urologist today (I never thought I would have to see a pee doctor!!). . .

At our last visit, I was told to begin weaning off of the smooth muscle relaxer that I was taking to help me urinate. Well, as I was weaning off of it, I began to have trouble going to the bathroom again. So we started back on the meds to try and help with that. Also, my bladder is not emptying fully again, much like it did when all of this first began, and there are a lot of white cells that are indicative of an UTI. So, he is sending that to be cultured and will call in antibiotics if needed. . .There are lots of things to think about and try to figure out about what could possibly be going on. I return in 3 weeks where we will hopefully come up with a new plan of action!

The Downward Slide

We just returned from a fabulous trip to MS for my sister's wedding. I knew going into it, that it would be difficult, but just how difficult I did not know. I shared these concerns with my doctor and he gave me some guidelines and medication just in case. The 12 hour ride out was difficult, but doable. I made a pallet in the back and was able to lay down. We stopped frequently so that I could stretch my legs. We made a day of it. . .

That Tuesday night, as we settled into the hotel, I realized that my level of pain was increasing. This happened everyday while we were there. . . I would wake each morning with more pain than normal and by the evening, things were becoming very intense. At the rehearsal on Thursday, I had to sit for parts of it and we even left the dinner early as I was in a great deal of pain. There were times where I contemplated a trip to the ER if the pain did not ease. . .

In all, the trip was harder than I ever anticipated, even with all of the resting that I did. Even with my family and friends taking care of the kiddos and my husband meeting every one of my needs. Even with all of the precautions that I took, I still slid backwards in the recovery. Even knowing this, I would not have missed it or changed anything. My sister will be married one time and there is absolutely nothing that would have made me miss it. . .

But, I am now playing catch up. Where my energy was once growing, it is now gone. Where the pain was becoming more manageable, it now is not. Where I felt like I was making progress, I now feel like I am just standing still where I am at. . .

In hindsight, maybe it was not wise to travel 1200 miles just 4 1/2 weeks after a hysterectomy, but there is no way that I would have missed my sisters wedding. I am truly grateful to both my sister and my new brother-in-law for their kindness and understanding with all of this. Their compassion helped ease my guilt of taking away from their day. . .

The Slippery Slope. . .

As we prepare for a long car ride soon, I am beginning to realize just how hard this recovery is. I can make great improvements one day and then I pay for it in the days to come. I try to take it easy, but I guess that my idea of "taking it easy" and my body's differ drastically. . .

So, it made perfect sense when the pain and muscle spasms were becoming more intense on a daily basis towards the weeks end. Yesterday, things became so intense, that I actually called the on call doctor. Then today, it was back with a vengeance and I also began to bleed. . . I called my doc again to get his take on things. I knew that the odds were in my favor that this is just healing, but you can never be to sure. . .

The conversation was very straightforward. I told him how I was feeling, and he expressed what he was thinking. At first, he tried to tell me to stay home to which I, ever so politely, told him that the only that I would stay put, is if he admitted me to the hospital! After looking things over for a few minutes, he called me back. This time, he again gave his permission for the trip. With this permission, however, came MANY restrictions. I am having to follow the strict instructions that were present in weeks 1 - 2, rest as much as possible, get out and walk every 1-2 hours while driving to stretch my belly, and if the pain becomes severe and/or I begin to bleed again, I am to call him and then proceed to the ER.

All in all, I am grateful that I have his permission. . . It will not be an easy trip, but I now know what I need to do. There is a plan in place for the what-if's and other troubling scenarios, which greatly helps with my anxiety. Plus we are headed home and when you are not feeling well, regardless of age, your home is where you want to be!

One Month Out. . .

Today is the one month anniversary of my surgery, and I have experienced every emotion from excitement to mourning during this time. . . It has been hard and it has been easy. It has been emotionally and physically challenging. It has given my husband I a deeper appreciation and love for the other. . . He has pampered me and loved me every step of the way, taking over household duties and the child rearing without me even having to ask. . .

As I sit here and contemplate what all has occurred in the past month, I am amazed. Amazed at how my body has handled challenges and struggles. Amazed with the bond it has created between myself and my husband and family. The bond between myself and other hysterectomy friends. The bond between myself and struggling in/fertility friends. . .

In the midst of my personal storm, I am seeing God's hand! Somedays I have to look very hard through the tears and sadness and offer it all up to Him. For Him to show me the way and how I can turn this experience into something positive. . .

So, while this month has held many challenges, when I look back, I would not change a thing. . . Those challenges have helped shape who I am as a wife, mother, sister, daughter, friend. I look forward to the next stage of life and how He wants me to use all of this to the positive!

My Best Friend

I am still suffering from a swelly belly! While it is no big deal first thing in the morning, by lunch time I begin to look pregnant! Because of this, I can not wear any of my normal clothes and I can not live in my pj's forever. . .

I was starting to get a bit depressed as it was continually another constant reminder of the surgery that I so badly want to move past. I long for the day when my hysterectomy is not on my mind for the entire day. The day when I can wear my normal clothes and not feel like I am squeezing into them. The day where I can make it the majority of the day without thinking of this. . .

Last night, I shared this with my husband. He offered kind words and just held me as the tears flowed. He rubbed my back, held my hand, wiped my tears. He listened and loved me. . .

Imagine my surprise when he came home today with BAGS of clothes for me. There were pants, capris, and skirts. All of them had an elastic waist, but did not look like something a grandma would wear! He had dresses and shirts that flowed away from the body. Then, he gave me another bag. . . This one was full of shower gels, lotions, perfumes. . . All of the stuff to help me feel relaxed and pretty!

Throughout this entire journey, surgery, and recovery, he has stood by my side. He has been there whenever I might need him. He has pampered me beyond my wildest dreams. We are so much more in love now than we were prior and that love grows so much deeper everyday.

So, thank you, my love, for everything. I could not have traveled this journey without you by my side. I love you and you will always be on my heart!

Good Times :-)

For the past 4 weeks, I have been looking for proof that my left ovary is working. If it chose to "shut down," like can sometimes happen, I would be forced into menopause as I can NOT take any form of hormones. . .

Well, a few days ago, I received that proof. I realized that I have PMS! Never in my 28 years, have I been so grateful for the cravings, bloating, mood swings, etc etc as I am this time. So, I am embracing this and beyond thrilled that what I thought might be hot flashes, really were not such!

I must admit though, as joyous as this was, it was SO hard at the same time. I knew that this PMS would be for nothing. That what would follow PMS, would not be happening. . . Granted, that time of the month (sorry to the men reading this!) was awful, but now, I will never have another one. . . I shared this with my doctor at my appointment on Wednesday and he made a statement that hit home. He said, "During the surgery you lost 15mL of blood, 3 tsp. That is not enough to need a blood transfusion, however your severe endometriosis, menometrorrhagia, and severe dysmenorrhea, that left you needing a transfusion. If you had not had a hysterectomy, we would have to start transfusing you more often."

So, while I am grateful that I will never need another transfusion due to my cycle and that my one ovary is working, I still mourn what is not there. . . What will never be there again. . .