I'm not naive enough this time to believe that I could possibly have everything figured out BUT it's been a very productive couple of weeks. I feel very well and happy today.
As I mentioned, the laparoscopy went well. Yesterday I got the operation report for the surgery. In addition to the endometriosis that was affecting the bowel, my doctor removed an adhesion (scar tissue) that was attached to my abdominal wall.
Scar tissue develops after a surgery and becomes painful if stretched. This makes so much sense. I had a laparoscopy to help me get pregnant in 2007 and then had two subsequent pregnancies. So my pregnancies were stretching scar tissue from the laparoscopy that I had to have in order to get pregnant. It's kind of a vicious cycle and will just be how it goes during my child-bearing years.
The good news is that I know what caused the initial abdominal wall pain and the doctor removed the scar tissue that had developed. The bad news is that I will probably develop more scar tissue from this last laparoscopy, especially if we decide to have another baby. I don't even mind that though. It's just nice to know what is going on in there. I'm happy to go through something like that for my children, they are worth it!
Now, moving onto the rest. I'm trying to piece everything together and I hope it makes sense. I had severe abdominal wall pain at the end of my pregnancy and afterwards. I also had a very difficult recovery from pregnancy and, I think, post-partum depression. I was getting woken up every three hours and didn't sleep well for a very long time and, by force, developed bad sleeping habits.
With all of the above happening and and the stress and anxiety of not knowing what was wrong with me, I think I got really, deeply sick. Every negative test made me feel worse. When doctors start telling you there's nothing else they can do and that you look fine on paper but you still feel as bad or worse as the day you walked into their office, you start to feel hopeless. Desperate. Alone. Scared. Tired. Crazy.
So here I am today. I have actual bald spots on my head. I'm 95lbs and food doesn't taste good anymore. I have also felt like I've had the flu for over six weeks. The full-body aching is worse than any stomach pain or cramping I was having. I have seriously been trying to find a replacement wife and mother for my family so I can die knowing everyone is taken care. I haven't been suicidal or anything, just desperate to leave my body. It has been a complete and horrible nightmare.
Yesterday I saw my Physiatrist, the doctor my mom works for. He reviewed every lab, scan and test I have had. He told me that for some reason my nerves, especially the abdominal nerves, are sending pain signals to my brain that they wouldn't usually send in a normal, healthy body. He said there isn't an exact known cause for something like this but studies have shown that people with this problem have different brain MRIs than people without it. So the pain is real, it's just not yet understood by the medical community.
My theory is that after everything I have been through the past couple years, my body and brain went into full crisis mode and just wanted to shut down. I started three new medications yesterday. One is to increase my appetite and help me sleep. Another is a non-narcotic pain medication that is non-addictive and non-sedative. The other helps with wakefulness during the day. (One to knock me out and one to wake me up!)
So the plan is to get me on a good sleeping schedule, gain some weight and get rid of the aching. Last night I slept 13 hours of the deepest sleep I've had since I became a mom. Today is the first day I haven't had a nap in ages. The pain medication has almost completely taken away the aching so far.
I am watching for negative side effects but they are all fairly gentle medicines and if all goes well, I think I have my regimen. Our hope is that after a few months of feeling well and staying on a schedule I won't need these pills anymore. I don't even mind staying on them long-term if it's the only way to keep functioning.
Oh, and the oils! My friend gave me an essential oil for the stomach and I feel like it helps me. I also ordered one called ProSirina that is specific to Endometriosis and Fibromyalgia. It had really great reviews from women who use it and I think it will help me a lot when the endometriosis starts growing again.
I'm still planning to take things very slowly and just take care of the babes. I'm not taking on any jobs or assignments and I'm not making any commitments until I feel like I've got a good grip on things. Taking care of these crazy munchkins is hard enough when I feel well!
I'm excited for 2012. I think it's going to be a nice year for our family. I'm happy for all that I've learned through these experiences. I know full well that there is probably more to come but I am going to enjoy what I can, one day at a time.
Happy New Year!!
Oh, one last story. Funny looking back on it. The morning of my surgery, I had arranged for Dave to be with me at the hospital and my mom took the day off work to take care of the kids. Well, Dave was up all night trying to pass his kidney stone(s!) and Mom turned out to be smack in the middle of a Chron's flare up. What a miserable bunch we were!! Luckily Dave's mom saved the day and helped get us all through everything. It's only funny now because all three of us are doing better. I just couldn't believe that it was happening at the same time. There's nothing like slipping into sedation wondering if your mom and husband will be in the hospital when you wake up and, who is going to watch the............zzzzzzzz. :)
Saturday, December 31, 2011
Thursday, December 22, 2011
Laparoscopy
Everything went really well. The doctor cleaned endometriosis out of my left pelvis. He said it was affecting my bowel in that area and he thinks it may have been radiating up and causing the other stomach pain. I don't know if some of the pain will come back once my stomach wakes up but I do know that the incisions are less painful than my stomach aches were before so that is a good sign. He also said this will keep happening until I have a hysterectomy but we're not dealing with that today. I'm really happy, relieved and now just tired. I had some adrenaline the first couple days after surgery but it's totally gone now. We just need to get through the holidays and hopefully everything will calm down for a little while.
Thursday, December 15, 2011
Allergy Test
Wow! That was a neat experience, although I am no closer to figuring things out.
It was a scratch test. I laid on my stomach and the nurse put about 49 scratches on my back with serums for all sorts of different things. One side of my back was grasses, fur, mold things like that. The other side was different foods, which of course was the main reason I was there.
My back instantly started itching like crazy and I had to push my head onto my hands so I couldn't scratch. They left the serums on for 20 minutes to see how my skin reacted and I could tell something was going to show up.
Turns out I am 5/5 allergic to every type of grass, cats, dogs, tumbleweed, dust mites and different trees. Every April to July I sneeze like crazy so I figured this was the case but it was cool to see the specifics.
Completely off subject though. Who cares?!!! I am not allergic to one single food. Dairy, egg white, WHEAT, soy, peanut, fish, shellfish, nothing! I guess my diet really isn't playing a role in this, although I do feel better without gluten. I need to do more research so I can continue that diet in a more healthy way though because I am still losing weight and I think gluten-free is contributing.
The doctor sat down with me to show me the results and he looked so concerned. He said he was sorry that he couldn't help me and wished me well. I told him it was nice to rule this out so now I can change my focus. Weird though. I was sure something would show up. I guess I'm not surprised though. It's kind of the norm now! It's okay though. Surgery on Tuesday.
It was a scratch test. I laid on my stomach and the nurse put about 49 scratches on my back with serums for all sorts of different things. One side of my back was grasses, fur, mold things like that. The other side was different foods, which of course was the main reason I was there.
My back instantly started itching like crazy and I had to push my head onto my hands so I couldn't scratch. They left the serums on for 20 minutes to see how my skin reacted and I could tell something was going to show up.
Turns out I am 5/5 allergic to every type of grass, cats, dogs, tumbleweed, dust mites and different trees. Every April to July I sneeze like crazy so I figured this was the case but it was cool to see the specifics.
Completely off subject though. Who cares?!!! I am not allergic to one single food. Dairy, egg white, WHEAT, soy, peanut, fish, shellfish, nothing! I guess my diet really isn't playing a role in this, although I do feel better without gluten. I need to do more research so I can continue that diet in a more healthy way though because I am still losing weight and I think gluten-free is contributing.
The doctor sat down with me to show me the results and he looked so concerned. He said he was sorry that he couldn't help me and wished me well. I told him it was nice to rule this out so now I can change my focus. Weird though. I was sure something would show up. I guess I'm not surprised though. It's kind of the norm now! It's okay though. Surgery on Tuesday.
Tuesday, December 13, 2011
Endometriosis
Warning: Girlie content to follow. Not too graphic though, I promise.
http://endometriosis.org/endometriosis/
I'm having a laparoscopy on December 20. I had a good visit today with my OB. After telling him everything and an incredibly painful exam, he feels that endometriosis could be playing a significant part in everything that's going on. Dave and I think so too because of the timing of my pain. I trust my doctor's opinion on this because he is the one who gave me the initial diagnosis in 2007.
He gave me two options. He said we could do this surgery or do Lupron Depot shots once a month for six months.
The Lupron forces your body into menopause so the hormones that stimulate endometriosis aren't present and therefore endometriosis doesn't grow for that time period.
The benefit to doing the shot is that he said it can kill endometriosis in places that he can't get to during surgery. There is a possibility it is growing in my upper abdomen so that would be a great thing.
The problem is the side effects. It would mean six months of hot flashes mood swings and night sweats, bone loss (temporary or not), possible heart palpitations, generalized pain, headaches, nausea/vomiting, fluid retention, weight gain, joint pain, acne, depression, dizziness, nervousness and many others. Quite a few forums I read tonight verify that the side effects are common. It could give me relief in one area but cause a whole lot of other problems. I am very sensitive to medications. I am on 1/4 and 1/8 of the normally prescribed doses of the meds I am taking now. Pain meds and birth control also make me sick and dizzy. I have a feeling that it would be a bad road to go down, especially in the state my body is already in.
Initially after talking to my doctor I thought the shots might be a good idea but after reading the side effects and reading other women's experiences I just don't think it would be right to put my family through six months of that. I spoke to a friend who had endometriosis until her hysterectomy at age 38 and she said that from her research and from the experiences of women she knew, she avoided the shots as well.
The main benefit of the laparoscopy is that he can go in and clean out any lesions or growths he can find. Plus we could get a visual of what is going on in there. He showed me pictures of lesions from my last surgery and told me that those would never show up on any scan so this is the only way to know. My last laparoscopy gave me instant relief and I'm hoping this will be the case as well. It would be so nice to have some answers.
The downside is that it's surgery, it's expensive, it's painful. I feel bad costing us and our insurance so much money. I can't make this decision based on money though. The shots would be expensive too and the other alternative is to do nothing and that doesn't work for us.
The other downside is that it's right before Christmas but it's my doctor's last day available this year and if there is a chance I can get some relief soon I want to take it. I'm not too worried about the holidays because we were planning to take it easy anyway and just enjoy our family. All we have left is some pretty extensive wrapping but we have plenty of time for that.
Dave and I pray for guidance when making decisions like this. We both feel strongly that this is the way to go. It may not solve all of the problems but it will take us down the path we need to be going down right now.
http://endometriosis.org/endometriosis/
I'm having a laparoscopy on December 20. I had a good visit today with my OB. After telling him everything and an incredibly painful exam, he feels that endometriosis could be playing a significant part in everything that's going on. Dave and I think so too because of the timing of my pain. I trust my doctor's opinion on this because he is the one who gave me the initial diagnosis in 2007.
He gave me two options. He said we could do this surgery or do Lupron Depot shots once a month for six months.
The Lupron forces your body into menopause so the hormones that stimulate endometriosis aren't present and therefore endometriosis doesn't grow for that time period.
The benefit to doing the shot is that he said it can kill endometriosis in places that he can't get to during surgery. There is a possibility it is growing in my upper abdomen so that would be a great thing.
The problem is the side effects. It would mean six months of hot flashes mood swings and night sweats, bone loss (temporary or not), possible heart palpitations, generalized pain, headaches, nausea/vomiting, fluid retention, weight gain, joint pain, acne, depression, dizziness, nervousness and many others. Quite a few forums I read tonight verify that the side effects are common. It could give me relief in one area but cause a whole lot of other problems. I am very sensitive to medications. I am on 1/4 and 1/8 of the normally prescribed doses of the meds I am taking now. Pain meds and birth control also make me sick and dizzy. I have a feeling that it would be a bad road to go down, especially in the state my body is already in.
Initially after talking to my doctor I thought the shots might be a good idea but after reading the side effects and reading other women's experiences I just don't think it would be right to put my family through six months of that. I spoke to a friend who had endometriosis until her hysterectomy at age 38 and she said that from her research and from the experiences of women she knew, she avoided the shots as well.
The main benefit of the laparoscopy is that he can go in and clean out any lesions or growths he can find. Plus we could get a visual of what is going on in there. He showed me pictures of lesions from my last surgery and told me that those would never show up on any scan so this is the only way to know. My last laparoscopy gave me instant relief and I'm hoping this will be the case as well. It would be so nice to have some answers.
The downside is that it's surgery, it's expensive, it's painful. I feel bad costing us and our insurance so much money. I can't make this decision based on money though. The shots would be expensive too and the other alternative is to do nothing and that doesn't work for us.
The other downside is that it's right before Christmas but it's my doctor's last day available this year and if there is a chance I can get some relief soon I want to take it. I'm not too worried about the holidays because we were planning to take it easy anyway and just enjoy our family. All we have left is some pretty extensive wrapping but we have plenty of time for that.
Dave and I pray for guidance when making decisions like this. We both feel strongly that this is the way to go. It may not solve all of the problems but it will take us down the path we need to be going down right now.
Monday, December 12, 2011
Sweet Relief
The Savella is working so well. It was a rough start. My Mom told me to cut down to 1/4 tab and once I did that I was able to start keeping it down. A few days later the aching started to fade. It's not 100% gone but I can live with this. I'm still pretty weak and limited in how much I can do in a day but I'm feeling so much better. The only side effect I've noticed is a rash on my fingers but it's worth it!
Also, Dave was home this weekend and I got such great sleep! I can tell it made a huge difference. The Zanaflex helped me to fall asleep and Dave getting up with our coughing little one helped me stay asleep. I love him.
Now that I'm not in as much pain I can think clearly again. I was scheduled to see an allergist two different times right after Thanksgiving but I felt too lousy to get ready and drive myself so I kept cancelling. I will see him this week and find out if any specific food is hurting me. My stomach symptoms are so random and sporadic now but I think it will help me to at least rule any allergies out.
I'm also going to see my OB this afternoon to talk about scheduling a laparoscopy this month to check for endometriosis. It is sad that the only way to really know if it's there is to go inside, I wish there was an easier way. It is a minimally invasive procedure though. I had one in 2007 and I'm pretty sure that, post-childbirth, it won't be too bad recovering. (I was a wimp in 2007!)
Okay, just a side note here. Constant pain is horrible. It has this wearing effect that literally drives me crazy. I'm sorry to those who are affected by it. I'm trying really hard, please know that.
Also, Dave was home this weekend and I got such great sleep! I can tell it made a huge difference. The Zanaflex helped me to fall asleep and Dave getting up with our coughing little one helped me stay asleep. I love him.
Now that I'm not in as much pain I can think clearly again. I was scheduled to see an allergist two different times right after Thanksgiving but I felt too lousy to get ready and drive myself so I kept cancelling. I will see him this week and find out if any specific food is hurting me. My stomach symptoms are so random and sporadic now but I think it will help me to at least rule any allergies out.
I'm also going to see my OB this afternoon to talk about scheduling a laparoscopy this month to check for endometriosis. It is sad that the only way to really know if it's there is to go inside, I wish there was an easier way. It is a minimally invasive procedure though. I had one in 2007 and I'm pretty sure that, post-childbirth, it won't be too bad recovering. (I was a wimp in 2007!)
Okay, just a side note here. Constant pain is horrible. It has this wearing effect that literally drives me crazy. I'm sorry to those who are affected by it. I'm trying really hard, please know that.
Tuesday, December 6, 2011
Interesting Article
http://www.webmd.com/fibromyalgia/guide/fibromyalgia-the-diet-connection
Oh and Savella made me sick all morning, I can't keep it down. I read that nausea and vomiting can decrease after a couple weeks but I don't know if I can make it that long. I need to be functioning now!
Oh and Savella made me sick all morning, I can't keep it down. I read that nausea and vomiting can decrease after a couple weeks but I don't know if I can make it that long. I need to be functioning now!
Monday, December 5, 2011
And The Winner Is........
Unspecified nerve pain. Okay. Both doctors aren't sure what is causing it and both doctors want to just go ahead and treat the pain. No more tests!!!
Tonight my internist told me that it's possible for your nerves to just start acting up and for whatever reason the focus of that for me is in my abdominal wall. Today marks three weeks of feeling like I have the flu with constant aching and it's driving me crazy.
I hate taking pills but I am out of options until I can get some control. I started a muscle relaxant, Zanaflex, which helps me sleep at night and I can feel sanity slowly creeping back in. It's also controlling the twitching all over, seriously the weirdest symptom I have had. It makes me very drowsy and dizzy so I can't take it during the day but I just got a new medication called Savella that is supposed to calm the nerves down and might even help me to be alert during the day so I should have a nice little tag team going on between the two of them. Ibuprofen helps too.
My plan right now is to get moving first thing every morning to get some momentum and then to pace myself so I don't run out of energy too early. I won't make any commitments to do anything, I'll just plan my day as I go and only do the things I can tolerate. I'm still losing weight so we got some Ensure this weekend, it makes me feel like an old woman!
My neighbor who has Fibromyalgia told me that it took her three months of treatment to get on a good medication schedule and to be able to predict flare ups. That may or may not be what I have but I do think this might take time. I just hope that this aching is not permanent and I also hope that if I am going to be having flare ups that they won't last three weeks or longer. Only time will tell though.
Maybe I can start blogging about something fun now!
Tonight my internist told me that it's possible for your nerves to just start acting up and for whatever reason the focus of that for me is in my abdominal wall. Today marks three weeks of feeling like I have the flu with constant aching and it's driving me crazy.
I hate taking pills but I am out of options until I can get some control. I started a muscle relaxant, Zanaflex, which helps me sleep at night and I can feel sanity slowly creeping back in. It's also controlling the twitching all over, seriously the weirdest symptom I have had. It makes me very drowsy and dizzy so I can't take it during the day but I just got a new medication called Savella that is supposed to calm the nerves down and might even help me to be alert during the day so I should have a nice little tag team going on between the two of them. Ibuprofen helps too.
My plan right now is to get moving first thing every morning to get some momentum and then to pace myself so I don't run out of energy too early. I won't make any commitments to do anything, I'll just plan my day as I go and only do the things I can tolerate. I'm still losing weight so we got some Ensure this weekend, it makes me feel like an old woman!
My neighbor who has Fibromyalgia told me that it took her three months of treatment to get on a good medication schedule and to be able to predict flare ups. That may or may not be what I have but I do think this might take time. I just hope that this aching is not permanent and I also hope that if I am going to be having flare ups that they won't last three weeks or longer. Only time will tell though.
Maybe I can start blogging about something fun now!
Thursday, December 1, 2011
Hmmmmm......
Things have been changing rapidly. I'm still achy all over and soooooo drained. After the emergency room my heart palpitations slowed down a lot but they are still happening. As I lay down at night and start to fall asleep I have these full body jerks that wake me up. I have had twitching all over my body constantly for the past three days. Today my right leg and left knee are twitching. Yesterday was my stomach, in that second painful spot I have. The day before that it felt like someone was tapping on my shoulder all day. It's so weird.
The biggest scare was yesterday. My sister Jenny was at my house and we were sitting at the kitchen table talking. All of a sudden there was a black spot on her face and I couldn't see the clock out of my left eye. It started getting worse so she told me to go lay down. I slept for about an hour and when I woke up my vision was almost back and I had a slight headache on the right side of my head. It wasn't unbearable, the way I picture a migraine. I've never had one before though so I don't know. Anyway, I threw up a few times and then felt almost all better. I've never lost my vision before and I hope that doesn't happen again.
I read that drinking lots of water helps with twitching so I'm doing that. My magnesium and calcium levels were normal in the ER so I know that isn't causing any of this. Also, I am completely off all medications now so these aren't side effects.
I'm seeing my physiatrist tomorrow. He and Mom really think it's Fibromyalgia which can make your nerves go crazy. If that is the case, I hope it can explain the nerve injuries popping up all over my abdominal wall.
I mentioned to a neighbor that I was being checked for Fibromyalgia and she told me to call another neighbor of ours who has it. When I called her she told me that I would be the 7th woman in our neighborhood she knows of to be diagnosed with that. SEVEN!! That is insane. My first thought was "What is in this water we are drinking?!" I'm looking into it. That just seems like too much.
Hopefully I will know more tomorrow. I guess a nerve test and possibly brain MRI are next but I think the MRI will be a waste of money and I might not bother. Everything comes back normal. I'm sick of hospitals and tests.
I have noticed that I have periods of extreme stomach pain and then go for a week or so with none. It really doesn't seem to be tied to my diet. I'm still avoiding gluten and I'm going to try to cut sugar out. I'm saving up to buy essential oils and will hopefully be starting Bikram Yoga soon. Dave and I both feel that those things will be beneficial no matter what I have.
Speaking of Dave, talk about amazing. He is so patient and understanding. This experience has been hell for him and he still does everything he can to reassure me and help with the house and kids. I hate for him to come home from long work hours and have to do so much around the house that I should be able to do easily. Oh well though, one day at a time :)
The biggest scare was yesterday. My sister Jenny was at my house and we were sitting at the kitchen table talking. All of a sudden there was a black spot on her face and I couldn't see the clock out of my left eye. It started getting worse so she told me to go lay down. I slept for about an hour and when I woke up my vision was almost back and I had a slight headache on the right side of my head. It wasn't unbearable, the way I picture a migraine. I've never had one before though so I don't know. Anyway, I threw up a few times and then felt almost all better. I've never lost my vision before and I hope that doesn't happen again.
I read that drinking lots of water helps with twitching so I'm doing that. My magnesium and calcium levels were normal in the ER so I know that isn't causing any of this. Also, I am completely off all medications now so these aren't side effects.
I'm seeing my physiatrist tomorrow. He and Mom really think it's Fibromyalgia which can make your nerves go crazy. If that is the case, I hope it can explain the nerve injuries popping up all over my abdominal wall.
I mentioned to a neighbor that I was being checked for Fibromyalgia and she told me to call another neighbor of ours who has it. When I called her she told me that I would be the 7th woman in our neighborhood she knows of to be diagnosed with that. SEVEN!! That is insane. My first thought was "What is in this water we are drinking?!" I'm looking into it. That just seems like too much.
Hopefully I will know more tomorrow. I guess a nerve test and possibly brain MRI are next but I think the MRI will be a waste of money and I might not bother. Everything comes back normal. I'm sick of hospitals and tests.
I have noticed that I have periods of extreme stomach pain and then go for a week or so with none. It really doesn't seem to be tied to my diet. I'm still avoiding gluten and I'm going to try to cut sugar out. I'm saving up to buy essential oils and will hopefully be starting Bikram Yoga soon. Dave and I both feel that those things will be beneficial no matter what I have.
Speaking of Dave, talk about amazing. He is so patient and understanding. This experience has been hell for him and he still does everything he can to reassure me and help with the house and kids. I hate for him to come home from long work hours and have to do so much around the house that I should be able to do easily. Oh well though, one day at a time :)
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