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 :)
Monday, November 28, 2011
Saturday, November 26, 2011
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 :(
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 :(
Monday, November 21, 2011
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.
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.
Monday, November 14, 2011
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!
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!
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