Okay, so I have been having some issues lately that I *did* notice before the hysterectomy, but since then, they have become worse. They are embarrassing, so I have said nothing to anybody until now.....
I called my primary after an appointment with my pain doc on Tuesday. I was so very frustrated because instead of treating/fixing the nerve, they want to drug me... something that I am not open to. He told me to come in, but while we were emailing, I mentioned this worsening issue to see what he thought and he wanted me to come in asap. Well, I did today and as I now have a referral to a new doc......
So, soon, I will be seeing a urogynecologist for a cystocele. To say that I am frustrated is an understatement. And then, there is the frustration of why was I not warned of this possibility PRIOR to the hysterectomy? I will go see this doctor and listen to what he has to say and we will go from there. I am still praying that surgery is not something that I need......
Showing posts with label complications. Show all posts
Showing posts with label complications. Show all posts
Friday, March 30
Saturday, March 3
1 Year Later
It has taken me quite a while to be 'okay' writing this...
I recall before the surgery having so much anxiety and fear that I would wake up and no longer feel like a woman, instead, I woke crying. Knowing that this was over and done. I remember praying that this surgery would be perfect, that there would be no complications during or after. And then as one night inpatient turned into two, and two into three, and so on, I realized that, once again this was not the case. Then as a few weeks of pain turned into a month, and that turned into 6 months, and that turned into a year, I am realizing that once again, things have not gone as planned. Before this surgery, I swore that I would NOT not return to the OR again. Well, go figure that once again, this was a false reality. And then about 6 months out, I realized that the endometriosis was back and this was confirmed during the surgery in December... So, I think that this one year mark has been hard because when I look back, nothing has gone as planned...
Now, there are many things that I am grateful for. The first being the most obvious about having a hysterectomy. Then, the cramping is minimal now. The cystic ovary is still present, but that is even milder. And there are others that I will not mention on here.... So, while things have not gone as planned, the good far outweighs the bad and I have to often remind myself of this when I am laying in bed from the pain. Or not able to take the kiddos around the block because the thought of putting one foot in front of the other brings tears to my eyes. And the blessing is that I have a great team of doctors on my side trying to figure out what the next step should be....
I have also found many blessings in this. I have been able to help a few other young women who have needed this drastic surgery. Shortly after mine, my aunt needed a hysterectomy and called upon me for questions. And for me, being able to help people have helped me deal with this and cope.
While this past year has been so very different than I imagined, I am grateful. I am trying to hold my head high and trust that God is using me in some unknown way to serve Him through this. . .
I recall before the surgery having so much anxiety and fear that I would wake up and no longer feel like a woman, instead, I woke crying. Knowing that this was over and done. I remember praying that this surgery would be perfect, that there would be no complications during or after. And then as one night inpatient turned into two, and two into three, and so on, I realized that, once again this was not the case. Then as a few weeks of pain turned into a month, and that turned into 6 months, and that turned into a year, I am realizing that once again, things have not gone as planned. Before this surgery, I swore that I would NOT not return to the OR again. Well, go figure that once again, this was a false reality. And then about 6 months out, I realized that the endometriosis was back and this was confirmed during the surgery in December... So, I think that this one year mark has been hard because when I look back, nothing has gone as planned...
Now, there are many things that I am grateful for. The first being the most obvious about having a hysterectomy. Then, the cramping is minimal now. The cystic ovary is still present, but that is even milder. And there are others that I will not mention on here.... So, while things have not gone as planned, the good far outweighs the bad and I have to often remind myself of this when I am laying in bed from the pain. Or not able to take the kiddos around the block because the thought of putting one foot in front of the other brings tears to my eyes. And the blessing is that I have a great team of doctors on my side trying to figure out what the next step should be....
I have also found many blessings in this. I have been able to help a few other young women who have needed this drastic surgery. Shortly after mine, my aunt needed a hysterectomy and called upon me for questions. And for me, being able to help people have helped me deal with this and cope.
While this past year has been so very different than I imagined, I am grateful. I am trying to hold my head high and trust that God is using me in some unknown way to serve Him through this. . .
Friday, January 6
Update:
Here is an update on the most recent surgery. . .
http://therikers03.blogspot.com/2012/01/post-that-i-have-been-avoiding.html
http://therikers03.blogspot.com/2012/01/post-that-i-have-been-avoiding.html
Monday, December 19
Tuesday, October 25
Nerve Block #__
I had another appointment with my new pain doc - I know that I have said it before, but I really like him! He takes his time. He listens. He explains things. He understands. He sees me as a person and not just a patient. Both he and his staff are great. And, he is by far, the most committed to helping me with this pain -This is what happened:
- He agreed that the swelling is probably just taking its sweet time leaving my legs, thanks to the Lyrica. He again said that it was nothing to be concerned with, so I will do my best to not worry about it! Just leave the occasional fingerprint!
- We spoke about other medications and realized that I have exhausted most of them.
- We spoke about the intensity of the pain - on here, I can put down my guard, but in person, I can *nearly always* put that smile on and pretend. Today, that smile left, and I was able to let him know just how tired of this I am. He listened and was an incredible comfort.
- After a brief belly exam, and because I had no kiddos (thank you SO very much Mackenzie!), the decision was made to start the process of a combination of nerve blocks, while trying to break up some of the adhesions in that lower right quadrant. (I did not even flinch!)
Saturday, October 22
In my last post, I was VERY discouraged. I was at a point of hopelessness. The one thing that I had prayed for and hoped for was, in combination with another medicine, causing adverse side effects. I was completely beyond myself, feeling like everything was crashing down on me. The tears were flowing most of the night. I needed to be alone as I did not want the kiddos or my devoted spouse to see me THIS upset, but once you become a mom, there is no such thing as alone time or privacy. . . and maybe that night, that was a good thing. . .
After talking with the doc, it was decided to take one Lyrica only at night. I began this immediately and at first it helped. Then after a week, the swelling came back and this time, it was MUCH worse than before. I immediately went up the road to have my blood pressure checked (103/68) to make sure that was not the culprit, and it obviously, was not. So, I once again called the doc, but this time I not only called my pain management doc, but also my primary. Pain Management doc wanted me to come in the next morning, and while I was grateful that he did not think I needed to be seen right then, I was scared. My ankles were HUGE. I could not slide my feet into shoes, they were that huge. It was ridiculous.
So, since I was not comfortable, and I am persistent, I knew how to get in touch with my primary when I need to, and I took full advantage of it! I am grateful that I did, as he was able to connect the dots and tell me that it was the COMBO of 2 of my meds that were causing this. He said that although it was not dangerous, that I needed to stop the Lyrica. . .Not what I wanted to hear. It was stopped and within about a week, the swelling was nearly all gone. I still have some residual that just is not wanting to go away, but for the most part, it is resolved. To say that I feel defeated is an understatement. I wanted this to work. I want to be free of this. But, I guess I just need to be patient and trust that this is His will for now. . .
After talking with the doc, it was decided to take one Lyrica only at night. I began this immediately and at first it helped. Then after a week, the swelling came back and this time, it was MUCH worse than before. I immediately went up the road to have my blood pressure checked (103/68) to make sure that was not the culprit, and it obviously, was not. So, I once again called the doc, but this time I not only called my pain management doc, but also my primary. Pain Management doc wanted me to come in the next morning, and while I was grateful that he did not think I needed to be seen right then, I was scared. My ankles were HUGE. I could not slide my feet into shoes, they were that huge. It was ridiculous.
So, since I was not comfortable, and I am persistent, I knew how to get in touch with my primary when I need to, and I took full advantage of it! I am grateful that I did, as he was able to connect the dots and tell me that it was the COMBO of 2 of my meds that were causing this. He said that although it was not dangerous, that I needed to stop the Lyrica. . .Not what I wanted to hear. It was stopped and within about a week, the swelling was nearly all gone. I still have some residual that just is not wanting to go away, but for the most part, it is resolved. To say that I feel defeated is an understatement. I wanted this to work. I want to be free of this. But, I guess I just need to be patient and trust that this is His will for now. . .
Saturday, October 8
Say it ain't so. . .
I am full of fear right now. Full of anxiety. Full of questions. . .
About 2 days ago, I noticed that I was retaining fluid in my ankles, having some crazy headaches, and my vision was becoming quite blurry. I kind of buried it in the recesses of my mind as there were far more important things happening. Then last night, I noticed that my ankles had turned into 'kankles,' the vision was quite bad, and the headache was very present. I e-mailed a pharmacist friend and she advised to call my doc as it could potentially be a reaction to the Lyrica. When I read her response, my heart sank. I excused myself to the bedroom where I just sobbed. . .
When I began the Lyrica on September 28, I also began a Novena to St. Gianna Beretta Molla. I asked her to intercede on my behalf. To make this medicine the one that I needed. Last Sunday, October 2, when the pain level intensified greatly, I began one to the Blessed Mother. I needed this medicine to work. It had to work. . .
Last night, I decided to not call the doctor and when I woke, I had ankles again! Although they were still a bit fluffy, there were there! Within a few hours, they had disappeared again. This time, I went up the road to my pharmacy and spoke with the pharmacist face to face. He asked questions and looked on the computer and then told me that I needed to all the doctor today. When we came home I did. . .
Now, I sit and wait for the return phone call with the tears running off of my cheeks. Incredibly fearful of what might be said or done. I am praying that this is okay and that I can continue on the medicine. That this is just no big deal. But, the fear has taken hold and I am scared as this medicine HAS to work. . .
~*~*~*~*~*~*~*~*~*~*~*~
UPDATE:
I just got off of the phone with the doc and we are going to decrease the Lyrica to once a day. He said that this is a rare complication of the med and so decreasing the dose or tapering off will help. I see him on Tuesday as a follow up to the pain increase from last week and we will come up with a plan then. My emotions right now are all over the place. I wanted and needed this to work, but it looks like my body just will not tolerate it. So, we wait and see. . .
My novena to the Blessed Mother ends on Tuesday, so maybe this is a good sign. . . At least I pray it is!
About 2 days ago, I noticed that I was retaining fluid in my ankles, having some crazy headaches, and my vision was becoming quite blurry. I kind of buried it in the recesses of my mind as there were far more important things happening. Then last night, I noticed that my ankles had turned into 'kankles,' the vision was quite bad, and the headache was very present. I e-mailed a pharmacist friend and she advised to call my doc as it could potentially be a reaction to the Lyrica. When I read her response, my heart sank. I excused myself to the bedroom where I just sobbed. . .
When I began the Lyrica on September 28, I also began a Novena to St. Gianna Beretta Molla. I asked her to intercede on my behalf. To make this medicine the one that I needed. Last Sunday, October 2, when the pain level intensified greatly, I began one to the Blessed Mother. I needed this medicine to work. It had to work. . .
Last night, I decided to not call the doctor and when I woke, I had ankles again! Although they were still a bit fluffy, there were there! Within a few hours, they had disappeared again. This time, I went up the road to my pharmacy and spoke with the pharmacist face to face. He asked questions and looked on the computer and then told me that I needed to all the doctor today. When we came home I did. . .
Now, I sit and wait for the return phone call with the tears running off of my cheeks. Incredibly fearful of what might be said or done. I am praying that this is okay and that I can continue on the medicine. That this is just no big deal. But, the fear has taken hold and I am scared as this medicine HAS to work. . .
~*~*~*~*~*~*~*~*~*~*~*~
UPDATE:
I just got off of the phone with the doc and we are going to decrease the Lyrica to once a day. He said that this is a rare complication of the med and so decreasing the dose or tapering off will help. I see him on Tuesday as a follow up to the pain increase from last week and we will come up with a plan then. My emotions right now are all over the place. I wanted and needed this to work, but it looks like my body just will not tolerate it. So, we wait and see. . .
My novena to the Blessed Mother ends on Tuesday, so maybe this is a good sign. . . At least I pray it is!
Tuesday, September 27
SO. . .
We, well I guess this should be I, have heard yet again, from yet another doctor the exact same thing. I truly thought that, with the hysterectomy, that my days of second, third, fourth, and so on opinions were over. Hopefully they are now as the diagnosis of illioinguinal neuralgia and, possibly genitofemoral neuralgia is what I am still given, much like I was always told a hyst was the only way. . .
He was not a 'pill pusher' or appeared to be a doc that would be shut down by the FDA like this local clinic. Always a HUGE relief when you hear that this is a 'pain clinic.' I feel confident in his knowledge and LOVE his nurse practitioner - she is a very holistic lady and not only saw me as a patient, but one that is also struggling. She helped me greatly and acknowledged my pain. She in a way, understood like not many others can. Together, they all make a great team. . .
After a physical exam and history by both he and his nurse practitioner, we spoke about what the diagnosis is and what it means in terms of living. While I still push myself to extremes, I would like to do so without hurting greatly. After speaking openly and honestly, we were given options. Some were the same as last time, others not so much. They included: *Nerve Blocks; *Radiofrequency Ablation/Cryoablation; *Spinal Cord Stimulators; *Lyrica
After speaking openly and honestly, we decided to go with the least invasive - the Lyrica. I will start the med tonight and pray that it goes well. I return in 2 weeks to see how it is going, if the med is working, etc etc. I feel hopeful and renewed. He was completely different from the doctor here at UF/Shands and so was his clinic.
So, I guess that time will tell! I am VERY optimistic that this IS the answer!
He was not a 'pill pusher' or appeared to be a doc that would be shut down by the FDA like this local clinic. Always a HUGE relief when you hear that this is a 'pain clinic.' I feel confident in his knowledge and LOVE his nurse practitioner - she is a very holistic lady and not only saw me as a patient, but one that is also struggling. She helped me greatly and acknowledged my pain. She in a way, understood like not many others can. Together, they all make a great team. . .
After a physical exam and history by both he and his nurse practitioner, we spoke about what the diagnosis is and what it means in terms of living. While I still push myself to extremes, I would like to do so without hurting greatly. After speaking openly and honestly, we were given options. Some were the same as last time, others not so much. They included: *Nerve Blocks; *Radiofrequency Ablation/Cryoablation; *Spinal Cord Stimulators; *Lyrica
After speaking openly and honestly, we decided to go with the least invasive - the Lyrica. I will start the med tonight and pray that it goes well. I return in 2 weeks to see how it is going, if the med is working, etc etc. I feel hopeful and renewed. He was completely different from the doctor here at UF/Shands and so was his clinic.
So, I guess that time will tell! I am VERY optimistic that this IS the answer!
Monday, September 26
ANOTHER Opinion. . .
Well, after 2 weeks of incredible pain, speaking to my doctor, discerning with my spouse, and praying for wisdom, I decided to call yet another doctor that come recommended by not only our doctor but one of Robert's co-workers. I was expecting to be told that they do not have any appts for ___ weeks, but sure enough, they had a cancellation at the location that is the most convenient for us. So, we took it. . .
Tomorrow at 2, I go to this doctor. I pray for wisdom and guidance. For knowledge and strength. I need relief. . . desperately. I am beyond tired of feeling somewhat better, and doing something ever so little and paying for it for days, or like this 'flare' lasting weeks. When I agreed to the hysterectomy that took place nearly 7 months ago, it was the final resort. I so badly want to go back in time and say NO and not let them do it, but I know that will never happen. I just desperately want for this chapter to end. . .
This appointment tomorrow has me full of anxiety. I am scared and I am weary. I am trying to trust with all that I can that this is His will. I am trying to put all of my anxiety and fear into His hands. I am trying to lean on my faith and know that He knows all of this. He knows when this will end. He knows what the outcome of tomorrow will be. He knows this and I know that He will give me the strength, but I am scared. I am human. . .
Tomorrow at 2, I go to this doctor. I pray for wisdom and guidance. For knowledge and strength. I need relief. . . desperately. I am beyond tired of feeling somewhat better, and doing something ever so little and paying for it for days, or like this 'flare' lasting weeks. When I agreed to the hysterectomy that took place nearly 7 months ago, it was the final resort. I so badly want to go back in time and say NO and not let them do it, but I know that will never happen. I just desperately want for this chapter to end. . .
This appointment tomorrow has me full of anxiety. I am scared and I am weary. I am trying to trust with all that I can that this is His will. I am trying to put all of my anxiety and fear into His hands. I am trying to lean on my faith and know that He knows all of this. He knows when this will end. He knows what the outcome of tomorrow will be. He knows this and I know that He will give me the strength, but I am scared. I am human. . .
Tuesday, August 9
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. . .
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!"
- 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!
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!"
Friday, June 24
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. . .
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. . .
Monday, June 20
A New Doc
Well, I finally bit the bullet and called the other pain doc with the University of Florida (Go Gators!) and the earliest appointment they have is August 8th. . . 6 weeks away. Normally 6 weeks is no big deal, but when you are dealing with chronic pain, the thought of 6 more weeks is awful. . . Think of having muscle spasms in the same place all day that intensify with activity for 15 weeks and then add 6 weeks to that. . .
On the flip side, I hope that the 6 week wait means that they are good people and not just a group that hands out narcotics by the handful to whomever they see. I know they are not, but when you talk about pain management docs, the thought of a SWAT raid enters my mind! I want someone that can help me get this to a tolerable level if not completely gone. . .
Please pray with me that this doc will have ideas, suggestions, advice on where to go from here as this journey is becoming long, too long. . .
On the flip side, I hope that the 6 week wait means that they are good people and not just a group that hands out narcotics by the handful to whomever they see. I know they are not, but when you talk about pain management docs, the thought of a SWAT raid enters my mind! I want someone that can help me get this to a tolerable level if not completely gone. . .
Please pray with me that this doc will have ideas, suggestions, advice on where to go from here as this journey is becoming long, too long. . .
Saturday, June 11
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.
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.
Tuesday, June 7
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. . .
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. . .
Monday, June 6
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. . .
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. . .
Tuesday, May 31
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:
(Me and the kiddos!)
- 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.
(Me and the kiddos!)Friday, May 27
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!
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!
Saturday, May 21
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. . .
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. . .
Thursday, May 19
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)
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)
Tuesday, May 17
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. . .
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. . .
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