Answers? Yes!! Maybe?

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. :)

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.

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.

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.

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.

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!

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! 

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 :)

I Can't Change Much but my Attitude

Warning: The following content is slightly religious :) 

I've been so down lately. It only took a few days of feeling lousy to shift back into a bad frame of mind.

On Sunday at church we sang a Sacrament hymn called "Jesus Once of Humble Birth". I've sung it a thousand times and never thought too much of it but there is a line that says: "Once all things He meekly bore, but he now will bear no more". I couldn't finish the song because I was bawling.

I need to be meek, humble and kind no matter how sick I feel. I think it's just part of enduring and if I can make those changes maybe my body will relax a bit. The sun will keep rising and I will have to get out of bed every morning now matter how I feel so I am really going to try to enjoy the hard days as well as the fun ones.

I read a quote recently that said: "If we all threw our problems in a pile and saw everyone else's,we'd grab ours back". I've been thinking a lot about it. I've been noticing that those around me are all struggling in different ways. We all just pull together and help in any way possible to make each others' burdens lighter and that's all we can do. I most certainly have angels in my life who help lift my burdens.

I also keep waiting for a dull moment. Sometimes it feels like Dave and I are on a roller coaster that never stops or slows down but I was thinking about that too and, I LOVE roller coasters. So I accept the challenge. I'm going to have more faith that Heavenly Father knows what I need and try to be more patient with the health issues that I just can't understand right now.

I sent my blog out to some family members, curious to see if anyone has been through similar problems that might be hereditary. I am so overwhelmed by all of the responses and phone calls we got. Thank you for your encouragement, prayers and support. I learned a lot and have new research to do! I know that everything is going to be fine :)

Just Need to Vent for a Minute

It really does help me to write this down. I hate to complain so much but it helps me to keep my thoughts straight. It's been almost two weeks since I woke up feeling achy all over. It's just not going away but now I feel achy and cold, down to my bones, just freezing cold. Especially in my hip, legs and toes. Hot baths, my heating pad, sweats and blankets all help temporarily.

It's been a crazy weekend. Thanksgiving was such a nice day. We went to Dave's parents' house and everything was perfect. Earlier that morning while we were making stuffed mushrooms, my heart started palpitating a little bit but I wasn't worried about it. 

Then after dinner it started again but more frequently. Also, my inguinal lymph nodes started throbbing on both sides. We got home and went to bed but I woke up about 12:45am because my heart was palpitating every few seconds, it was really obnoxious.

I couldn't go back to sleep so I was on the couch watching TV when Dave came out of our room, violently ill. He went from lying on the floor to throwing up and right back to the floor. It was more in his stomach than his back so we thought maybe it was something he ate and tried to give it time. At 4:00am, I loaded the kids into the car and drove him to the ER where they found a kidney stone. It took a triple dose of morphine to get him to finally stop shaking and help him calm down.

I went home for a couple hours to be with the kids and to try to get a little bit of sleep while he was resting but my heart was just going non-stop. I went back to pick Dave up and mentioned it to his nurse. She felt my pulse and told me it might be a good idea to get on a monitor so I checked myself in, even though I didn't think I was having a heart attack or anything like that.

The monitor showed premature heartbeats and the doctor said that for some reason my heart was beating early and then it would pause to get back to the normal rhythm. It isn't life threatening and he said it's usually caused by cocaine (no), smoking (no), alcohol (no) or caffeine (no). I did start a new nerve medication this week, maybe it is from that. He said I might just need to decide if the medication is helping enough to deal with the palpitations. He also checked labs and felt my lymph nodes that were throbbing and wasn't worried about blood clots or anything like that. He offered a pelvic ultrasound but I just had one in October and also just had a CT scan so it didn't seem necessary to do another.

My sweet, angel Mom was with my kids while Dave and I were at the hospital. She has been working so hard to help me find a diagnosis for all of this. She is the medical assistant for the physiatrist who has been giving me the abdominal injections and trying to help the nerves in my stomach. When we got home, she had pulled up a website about Fibromyalgia. It listed many, pretty much all of my symptoms, including now heart palpitations so I'm looking into that now. There is a link between Fibromylagia and Endometriosis so maybe this really is the case.

For now I am just trying to keep the babes happy and my poor husband comfortable til he passes that stone. I feel like I have the flu, it hurts to move and I just want to curl up in a blanket and sleep forever. It was quite refreshing that Dave had pain, went to the hospital, had a scan, got a diagnosis and now we are dealing with it. I'm most definitely not envious of his poor kidney pain but I sure wish a diagnosis could be that simple :(

Update

Things have been really difficult this week. I've been down (physically) and in lots of pain for 8 days now. Labs and CT scan were normal except for some blood in the urine. I don't know how it's possible to feel this lousy and look so good on paper.

I thought we were at a dead end with the CT coming back normal but I still have some blood work my doctor wanted to order after the scan, the more in-depth labs to check for Lupus. The physiatrist I have been seeing started me on a nerve medication today to see if it stops the flinching and spasms in my stomach. I'm looking into seeing a neurologist as well to see if that gets me anywhere. Also an OBGYN to discuss a laparoscopy to see if endometriosis has spread to my abdominal wall/nerves (is that even possible????).

I am trying so hard to not be stressed about this. I just feel that if I can put a name with whatever this is then I can really face it. Aside from the pain that has come back, I'm now 98 lbs. My hair is falling out. My eyes hurt and they are so dry I have to wear glasses every day. I get so tired that I can't even move but then can't sleep at all. I literally feel like I'm dying in slow motion and no one can stop it.

So here is my question: If everything is logically telling me that I'm fine, do I just drop it? I can't imagine throwing more money into this or going through a surgery right now. What if that shows nothing? I would just break down. But then on the other hand, what if I ignore something important and it becomes too late to fix it? I am responsible for my little ones and always want to be here for them. I just don't know the answer. 

Well, aside from all of my complaining, I feel very content and thankful right now. Tis the season, right? The great news is that the CT scan didn't show any tumors or cancer. That is huge! I also feel like I'm coming out of this flare-up or whatever was going on this past week. We are going to keep taking this one day, or even one hour, at a time. I am going to enjoy every second with my sweet family and focus on all of the blessings we Stevens' have. I am surrounded by incredible family and friends who support and validate me. 

Discouraged and a Little Scared

I was pretty upbeat last time I posted. I have had such a great couple of months and I'm so happy about that. The gluten-free diet has really helped me, especially my energy level.

I mentioned that the hard spot in my stomach was almost gone but last week I started noticing it more and more. I thought maybe it was from Halloween candy. I started planning to cut sugar out of my diet, a thought that terrifies me, it's going to be difficult.

Anyway, a few nights ago I started having spasms and pain in my left lower stomach. It felt exactly like it did when the nerve problem originally started in my upper right stomach. This is the third spot this is happening now because I also have one in my upper left stomach which started a couple months ago (I've been ignoring that spot because it didn't fit in with ACNES). Whatever is going on in there is spreading. It feels like something is attacking my stomach.

Since my original problem appeared to be a nerve, I started looking up nerve disorders that can attack the stomach. A few links to websites about Lupus came up. Lupus is a chronic inflammatory disease that occurs when your body's immune system attacks your own healthy tissues and organs. In addition to the stomach issues, I have many of the other symptoms: hair loss, weight loss, joint pain, fatigue, swelling, tingling in my feet, blacking out wtih dizzy spells and dry eyes (I haven't been able to wear my contacts for a few months without lots of discomfort).

I never thought that a lot of those symptoms could be related to my stomach. I spoke with an internist today, a brilliant doctor I used to work for. He is my very last resort. He was so thoughtful and is willing to do some more in-depth bloodwork and a CT scan to figure this out. Thank goodness for a doctor who listens.

He said he also wants to check to see if I have a hormonal imbalance from my last pregnancy because that whole experience was wrong. Four weeks after delivery I started hemmorhaging like crazy and an ultrasound showed particles from birth had not come out with the placenta. He said my OB should have ordered a pelvic CT scan to check for fluid build up and swollen lymph nodes. So I might have problems from that, which would make sense because I have not felt right since my pregnancy.

So the blookwork and scans begin again this week. I must say though, at least I am not in severe pain like before.

I'm freaking out right now. Lupus would mean a lifetime of treatment and flare ups but at least it would mean answers. Why can't I just know what is wrong instead of thinking I have control and then losing it? Ugh, I just feel like sobbing right now.

It feels so weird to be sharing all of this personal information. I normally would just keep all of this to myself and my family but I believe now that sharing health experiences can save lives. We can't just trust doctors to make us fit into their perfect little diagnosed boxes. The more talking and research I have done, the more I have figured things out on my own.

More to come! 

Temporary

Taking gluten out of my diet has helped immensely. It's been a week now and by about day 4 the hard spot was gone. I'm so happy! I knew it wasn't life-threatening but it hurt and it freaked me out.

If I don't plan my meals ahead of time I can get into trouble and all the Halloween treats around me are very tempting.

I was talking to a friend today who's friend had to temporarily go off gluten and after a few months she could start adding things back into her diet. This also happened to my dear mom who has Chron's disease. I hope that after my stomach calms down I can start eating some of the things I love again. On the other hand, there really is life after gluten. It is possible to still enjoy eating and I am having great practice in self-control and focusing on healthier foods. I think it's for the best. I just have to plan ahead or else I get really grumpy from being hungry!

Gluten Free??

It's been a hard week. My last injection wore off after three weeks and I would have rushed in for another but my kids were very sick last week and I used sitter time to see my gastroenterologist. It left me in pain over the weekend but I am actually glad because I need to deal with what is happening now instead of continuing to numb it.

My GI and I talked a lot about nerve injuries. He doesn't think that the nerve is my only problem. I already knew this because, while I can be completely numb, there is a spot in my stomach that can grow to be the size of my fist, I can literally grab it and hold it with my hand. It freaks me out. A lot.

I was hoping that after my nerve calmed down, so would whatever this is. I have had every test available to diagnose it and nothing is coming up. He ordered one last blood test to check for gluten intolerance. I tested negative for Celiac Disease but I guess I can still have a reaction to gluten. I don't have the test results back yet but I decided to stop gluten to see what happens. I will do anything I need to do to get better!

Talk about self control! It's been four days. I keep forgetting but I'm going strong. This morning I had to spit out a bite of Raisin Bran and it's so weird to not be able to just make myself a sandwich. I can do this though.

The timing is kind of weird. I just found out about a book that teaches how to heal endometriosis (another health issue I have) through nutrition and I was already committed to working on that. http://www.amazon.com/Endometriosis-Key-Healing-Through-Nutrition/dp/0007133103/ref=cm_cr_pr_product_top

Maybe changing my diet can help with both problems. I have learned throughout this year that I am my biggest advocate and doctors can only do so much, even if they really mean well. I need to be more proactive and I need to be in charge of my body.

I am soooooo grateful for these injections because if I would've had to go on much  longer with constant pain, I would have gone crazy. I had a break and can breathe again so now I will figure this thing out. I will probably have another injection in the future but I'm going to continue with this diet for a while and see what happens. We shall see!!

Life Goes On

Wow! October has been an amazing month! Birthdays, our anniversary, great family, lots of celebrating. Life is great and I feel so much better, especially emotionally.

There are entire days where I don't even think about my stomach. Every single morning that I wake up without pain, I almost laugh. It's a feeling that I hope I never forget. Good health is such a blessing.

That last abdominal injection that I had while standing really must have done the trick because I haven't needed to go back. Things aren't perfect but they are closer than I thought they could be. I have found that, for some reason, chocolate and getting really full sets things off and then I have pain across my upper stomach. I'm not sure why but I'm trying to avoid those things so I don't have to take medication anymore. I miss chocolate but I'm sure I'll get used to it.

I haven't been able to exercise much at all. It's hard because that nerve is right in the center of everything. Running, crunches, any abdominal strain at all causes it to throb. I am slowly testing it to see what I can handle because I miss those endorphins and I want my muscles back!

I see my gastroenterologist this week, I am so excited to talk to him about everything that has happened. I can let him know I'm not crazy and hopefully give him this information so that he can help the next person who comes along with this nerve injury. I read that 30% of people with abdominal wall pain have ACNES. That is huge! The article also said that gastroenterologists don't know much about this at all and so it goes undiagnosed for years in many patients. That makes me so sad. The test for this literally takes one finger. One copay. No radiation. I'm so happy that someone shared the information with me so I didn't have to waste years of my life, the best years, struggling and depressed.

I have been working to repair the friendships and relationships that suffered while I was down. I was not available to some who needed me and I couldn't even explain myself at the time. I hated talking about my pain because it didn't help anything and I was in too dark a place to ask for help. I am sorry for that, my true friends will understand and forgive me. Life is too short for anything else. I am mainly focused on my sweet husband and my babies. I LOVE every second with them. We play almost all day, sometimes  we don't even leave and the house gets torn up and scattered. We paint, read, color, sing, dance, laugh, eat, tickle, cuddle, nap and wait for Daddy to get home so we can play some more. Sometimes there are tantrums but they don't last long.

I would never want to relive the pain I had BUT I am so happy for what I learned and for what I can appreciate now. I have this amazing support system, the best friends and family anyone could ask for. I am trying to focus on the spiritual side of life, yet another very numb spot for me but I have the time and desire to get to a good place and I will. If someone or something stresses me out, I find a healthy place for it/them and don't focus on the negative. There is a connection between your mind and stomach, everything you internalize can cause long-term damage. It's not worth it!! I have almost three decades of internalizing though, it's going to take some time but I will get there.

Therapy

I've recently started three types of therapy: massage therapy and trigger point injections for a stomach injury and I had my first session with an emotional health counselor yesterday, mainly to deal with issues caused by my stomach injury.

My counselor told me to write things down instead of keeping them inside. She said I don't need to write down only bad things, just anything. So I will blog. I'm way behind anyway, right?

It's been quite a summer. We've made some really great memories but overall it has been the most difficult summer of my life. (I also said that last summer though!) Last summer is when it started. I was pregnant with my second baby. Earlier in the pregnancy I started having spams in my upper-right stomach. They weren't painful and the doctor told me the baby was fine so we kept plugging along.

At around 31 weeks I started having what felt like rolling contractions in my upper stomach. Every time I did anything physical, even pick up my son, I started feeling this tightness that took my breath away. I went to the hospital five times over the next six weeks to have contractions stopped. It was confusing that two of those times they weren't even showing up as contractions.

I felt that maybe I was just being a wimp. It was a hot summer and I had gained more weight than my last pregnancy. I was induced the minute I could be because I was in so much pain and so miserable. Labor went pretty well and I thought it was over.

I had a rough recovery. Lots of things were going wrong. We got through it though. In October I noticed the spasms were starting again. This time, very painful with a hard spot that moved around my upper stomach and under my belly button.

In November I saw my primary care physician. He suggested a few possible diagnosis and recommended a CT scan if my symptoms didn't go away.

I got carried away with the holidays. My daughter got the flu in January and had one virus after another until May. She was four months old in January and was just starting to sleep better at night until the flu started. She was coughing constantly for that entire period and not sleeping more than three hours at a time, if that. We were so sleep-deprived and worried about her. Her pediatrician kept telling us not to worry and that it was normal for a baby to catch so many viruses because she was exposed to so many new things. Luckily he was right and she started to improve. The damage was done though, not sleeping from July to May sure takes it's toll on a person's emotional and physical health.

In April, my stomach ache started. The spasms and hard spot had been happening all along but the pain was very tolerable and I wasn't in a place where I was taking care of myself at all.

I started walking every morning with a neighbor and it only lasted a week-I could barely stand up every morning. Everything I ate just killed my stomach. It became a constant, nagging ache with occasional flare-ups that caused nausea, vomiting, headaches and throbbing in that spot in the upper-right side.

In May I made an appointment with a gastroenterologist. They were able to "squeeze me in" in June! I took the appointment and just did what I could to get through each day. I was already used to just coping from the last part of my pregnancy. I went into survival mode and did the minimum I had to each day, mostly just keeping my kids alive.

My mom has Chron's Disease. This was my first conclusion. With Jewish blood and family history, it was a huge possibility. The gastroenterologist didn't think that was the case though, especially because the pain was only my upper stomach. He thought maybe ulcers or my gallbladder. So we started ruling those out with an EGD and stomach ultrasound. I started a heartburn medication which didn't help but didn't hurt either. Both tests were normal.

In July things took a horrible turn. I couldn't eat ANYTHING. So much constant pain. The attacks were more frequent and worse. I started blacking out, losing weight and had no energy. A trip to the ER was a huge waste of time. My blood work was normal so they sent me home with some sort of sedation. I wasn't their problem.

My gastroenterologist ordered a HIDA scan to check my gallbladder. Normal. I started on a medication called Bentyl that really helped my stomach temporarily but it would always come back. Especially in the morning, I would wake up in misery.

I ended up on quite a few medications: Bentyl, Cymbalta, Align, Omeprazole and even Midol. I never take pills so it was hard for me to force myself to take so many but I was desperate. In late August, my doctor ordered a Barium X-ray to check for a bowel obstruction because I was still losing weight. I was sure it was going to be normal. It was.

I was told that I had a functional abdominal problem, which I looked up online. The way I understood this was that my brain was telling my stomach that it hurt. It's in my head! What?!!! I knew this wasn't the case. All I wanted in the whole world was just to be able to be a good mom to my babies. To be happy so my husband could be happy. To have a decently clean house. To be able to walk down the stairs to switch the laundry. To be able to make our bed. Maybe cook some dinner. Take a shower and get dressed every day. This is how low my expectations were! Well, the tests were all coming back normal, so maybe I was just crazy!

I was devastated. I needed a diagnosis. A real one. We spent most of our savings on these tests that were just telling me it was in my head.

One night in September I was doing research online. I swear I had done this before but I typed in "right upper abdominal pain" in Google and came upon a health forum. People, hundreds of people, were having the exact symptoms and problems that I was having. I was bawling. It was so comforting to know that I wasn't alone and I wasn't crazy! One person posted about something called Abdominal Cutaneous Nerve Entrapment Syndrome-ACNES. I followed the link and it talked about how a person can have a pinched nerve in their abdominal wall which causes GI-like symptoms. It said the solution is a trigger point injection into the nerve.

This was where the blessings started pouring in!! My mom is a medical assistant in a physiatrist's office. This is what he does! He treats nerve injuries, mostly in the back and neck but he could most definitely give me an injection to see if it helped.

She got me in the next day. He gave me that shot and it shot me through the roof! The needle hit that nerve and it we knew we had found at least part of the solution I needed. I got home that night and was numb. The spot was tender but my stomach didn't hurt for the first time since April. Oh how relieved we were!

Here is my conclusion: I got a pinched nerve while I was pregnant. It went untreated, got worse and worse. Food passing through that part of my stomach was pushing on the nerve and radiating into my stomach, causing GI-like symptoms, completely throwing us off scent.

So here we are today. I've had two more trigger point injections. The last one he did while I was standing up. It was the worst pain I have ever felt, which was good news, we hit the exact right spot. I found  a massage therapist who specializes in nerve injuries. I also started using an electric TENS unit which should be helping the nerve heal.

I still have that hard spot in my stomach and am still taking the Bentyl. The spot doesn't hurt and I can eat again. I think that I possibly did develop a functional abdominal disorder because of the pain I was having from the nerve-my GI doctor was sort of right, it just wasn't the whole story. I am hoping that after my stomach has been calm for a few months that everything will just be normal again.

Now I am trying to fix my emotions. I don't like to admit this but by August I had begun hating woman who had their lives together. I would see a mother with her immaculately dressed self and children, her clean house, job, social life, energy to serve others, and feel rage. I can barely brush my teeth and you can accomplish all of this! It just felt so unfair. It hurt. I felt judged. Do they think I'm lazy?A bad mom?

Reality is that I felt lazy, I brought those feelings upon myself. When the spirit is willing but the flesh is weak, it's easy to break down. Chronic pain is slow torture. I'm not an angry person so the rage settled into a sort of numbness, which is really not a healthy way to deal with things.

I have so much compassion now for anyone who has chronic pain. I will never take one second of good health for granted. I can look back now and feel stronger and see all of the little blessings I received through these trials. Heavenly Father was throwing me bread crumbs along the way through family, friends and inspiration, I was just too broken to recognize them at the time.

It's very hard for me to spend money on myself. There are bills to pay, the kids need shoes and diapers. Groceries and gas prices are higher. All that jazz. It's $55 for an hour-long massage and $45 for a session with my counselor but I realize that these are temporary and will help me to be a better, happier, healthier person so it is worth it. I feel so blessed that these options are available to help me heal. I am ready to start being the wife, mother, daughter, sister, aunt, friend and neighbor that I know I can be.

Bottom line: Numb stomach=good, numb spirit =bad!