Wow. I just rediscovered this blog. Its been well over a year. Just reading through old posts, I wish I could report that some things have changed, but no, not really. I'm still suffering with the same bullshit. Our family has been hit with what seems to be a black plague of bad luck.
The first thing was our air conditioner. $400 to get that replaced. While replacing the part needed, we discovered a leaky pipe. Dave was able to fix that thankfully. Then we discovered a leaky roof in our master bathroom (yay, not) and what looks to be like the appearance of black mold? On top of that, the ignition switch in the Honda went, leaving us with 1 car which makes it a pain for me to get to work now (oh yeah....I started working. More on that another time, I guess.) So his car is in the garage. And in the middle of this, his gram passed away. The viewing was yesterday where I was struck with a absolute horrible migraine. The past few days I have been holding about 10 lbs of water weight, a bad headache and horrible fatigue. I've been on lasix and potassium. I'm still trying to recover from the most recent surgery in February where they cleared a bunch of scar tissue.
So, yeah, it's been a year. Lots an lots has happened in that year. Jenna is going into 1st and G into 3rd. I'm working as an In-Home Health Aid. I get paid almost 10 bucks an hour basically doing what I do at my own home. Laundry, light housekeeping, I may assist with a shower, or cook a meal. I male a difference in these elderly's lives and help them stay in their own home.
I suppose I should try to sleep. Funeral in the morning but Jenna is hogging my bed and my head hurts and can't sleep. Mend I'll try to update this thing more but life has been so busy so I honestly doubt it.
Saturday, June 27, 2015
Saturday, October 18, 2014
Insomniac
Here I lay in bed, almost 2am, completely wide awake. I took sleeping meds about 10:30 and they never kicked in. I get this way for a few days every month. I'm suspecting its hormone-related. With the insomnia comes an increase in hair shedding, extreme fatigue to the point where I don't want to move from my couch. Yet, I can't sleep. I'm sure I will be on my face tomorrow.
It feels like I have so much on my mind, yet nothing at the same time. It feels like I've been going back into my downward spiral yet again. The mood swings from depression to just feeling barely okay are annoying. So many things that have been happening and I haven't had any interest or motivation to do any journaling, which is usually therapeutic for me. But, I've gone and basically shut myself out from everyone, including the interwebs.
I've been waiting on results for my ACTH stimulation test and it's been over a week and my doc still doesn't have any results yet. I'm barely producing any cortisol, which can be potentially life-threatening and also has the added perk of not handling stress very well which brings out my OCD side in the worst way. So, I had this test done to see if the low cortisol is being caused from insufficient adrenal glands, or if it's the pituitary/hypothalamus. That little gland has been causing so much havoc in my body that i wish they would just remove it. Because of that little thing, I stopped producing estrogen. According to the bone density scan the doc ordered, I already have osteopenia in my lower spine and in my left hip. So, that is pretty much the precursor to osteoporosis. The density in those areas are too low for a woman my age, but not low enough to be considered osteoporosis yet. It's coming, now it's pretty much just a waiting game as to how old I will be when I develop it. My end keeps talking about hormonal replacement in a more aggressive form than regular birth control, but now he won't do anything until we know if I am going to need corticosteroid replacement for the low cortisol levels. I follow up again in November, if he refuses to change anything I'll be finding myself a new endocrinologist. I've been on my tumor med for over a year and the tumor hasn't grown, but it also hasn't shrunk any, either. My prolactin levels are basically the only hormone my body is stable with and that's probably due to the medicine. Is the medicine suppressing the other hormones or is it the tumor? I ask my doc that and never get a straight-on answer because the endocrine system is so complex and I don't think he truly knows what is happening. He may be an endocrinologist, but he specializes in diabetes and metabolism disorders. I need a doc that specializes in the pituitary, hypopituitarism to be exact. The only docs that I can find that focus in the that field alone are out at the Mayo Clinic. If this continues to go untreated, my life expectancy is 87% less of someone who doesn't suffer from the disease. If this were to get treated, would be GI symptoms ease up?
I've been in a vicious cycle with that whole thing as well. I'll go days with barely an appetite, forcing myself to eat or drink anything. Then I will wake up and be so hungry all day long and my appetite feels insatiable. So, I end up overdoing it (which my overdoing it is me barely getting in 600 calories in a day) and I completely wreck my stomach, leaving me feel sick and yucky with no appetite again. Then when it comes back, I overdo it again and the cycle repeats over and over. I had a small bowel follow through scheduled for yesterday morning and had to reschedule due to waking up with a horrible headache because I'm long overdue for a chiropractor visit for my neck problems. I've been having a sometimes dull, sometimes sharp pain in my lower right quadrant of my stomach, down near the pelvis. It gets so bad sometimes it wakes me up at night. So it's possible I have a stricture or a kink in the intestine where things seem to be getting stuck. So that was rescheduled for Tuesday. I'm hoping for normal results so I don't have to worry about surgery. If I need surgery, that will totally fuck up our Disney plans for the summer. So, obviously surgery is gonna happen because why would anything good actually happen to this family? Seriously, things have been so fucked up.
With all of my health issues aside, my father-in-law was laid off. He's having a hard time finding another job making what he was making. Things with Jenna have been approving. Speaking of my Jenna, she seems to be doing pretty well in kindergarten. She's getting a little extra help and some days she is more compliant and more confident in herself, and days where she is so defiant and oppositional that she refuses to do any work and argues with me she doesn't know any of it. But, she's seeing the school therapist twice a week, has a teacher that comes in to her classroom during reading time to help give her more individual attention when it comes to learning to read. Plus, she's involved in a group twice a week in school to help handle her feelings, teaches her how to follow rules and make and maintain healthy friendships. On the 28th, a parent support group will be started for the parents that have kids involved in this program so I'm anxious for that to start. Gianna was also placed in something called a Guidance Group. If you watch the show The Middle, the youngest child Brick is involved in a social skills group that teaches appropriate ways to interact with kids his own age. Gianna is basically in the same thing. We spent so much time and effort focusing on Jenna that we failed to recognize some red flags in Gianna. She's a very friendly, happy little girl so I never thought to much of her quirks. She has a very high self esteem, a little too high. She doesn't interact appropriately with kids her own age and is also very immature socially for her age. She is very bright, reading beyond a second grade level yet has a hard time doing simple tasks such as washing her own hair without assistance. After a meeting with the guidance counselor and her teacher, they think it would be a good idea to have her evaluated for Aspergers. And as soon as they even said that, it all clicked. She is a female child version of Sheldon. She doesn't understand sarcasm, she doesn't know how to joke around appropriately and when she tries to make a joke, it makes no sense. If you try to tell her a joke, you have to explain why it's funny. If you want to have a conversation with her, it has to be about what she wants to talk about and it's almost always the same things. She has no interest in other peoples feelings, or maybe she doesn't understand empathy? I can be crying because of pain or being sick and she doesn't pick up on that. Playing at a friends house, her friend fell off the swingset and hurt her leg. Instead of Gianna asking if her friend was alright, she asked her to move so she could use the swing lol. So, I do very well believe she has Aspergers. She feels so disconnected sometimes. She doesn't like hugs or kisses, she won't tell me if something is bothering her. Then I have Jenna, who has no problem telling you when she's having a problem because she gets so explosive. But also loves to cuddle. She's very oppositional, Gianna is very easy going and compliant and would rather you do everything for her where as Jenna is so very insistent on doing everything herself. They are total opposites lol.
So with all of this going on, it's no wonder I constantly feel stressed out and depressed. It literally feels like I'm just waiting to die. And each of my girls have some issue because they have a crazy mom. Jenna's therapist is suggesting we monitor her closely for bipolar disorder. She's too young for a diagnosis, but it's in the family and she already has many symptoms of it so it's possible she has that on top of the PDD and ODD.
Blah. Well, I suppose I need to try to get some sleep if I plan on being somewhat functioning tomorrow. I have to go to Walmart for a birthday card and take Gianna to her friends birthday party. I'm anxious to see how she interacts with the others at the party. So, on that last random thought, I'm out.
It feels like I have so much on my mind, yet nothing at the same time. It feels like I've been going back into my downward spiral yet again. The mood swings from depression to just feeling barely okay are annoying. So many things that have been happening and I haven't had any interest or motivation to do any journaling, which is usually therapeutic for me. But, I've gone and basically shut myself out from everyone, including the interwebs.
I've been waiting on results for my ACTH stimulation test and it's been over a week and my doc still doesn't have any results yet. I'm barely producing any cortisol, which can be potentially life-threatening and also has the added perk of not handling stress very well which brings out my OCD side in the worst way. So, I had this test done to see if the low cortisol is being caused from insufficient adrenal glands, or if it's the pituitary/hypothalamus. That little gland has been causing so much havoc in my body that i wish they would just remove it. Because of that little thing, I stopped producing estrogen. According to the bone density scan the doc ordered, I already have osteopenia in my lower spine and in my left hip. So, that is pretty much the precursor to osteoporosis. The density in those areas are too low for a woman my age, but not low enough to be considered osteoporosis yet. It's coming, now it's pretty much just a waiting game as to how old I will be when I develop it. My end keeps talking about hormonal replacement in a more aggressive form than regular birth control, but now he won't do anything until we know if I am going to need corticosteroid replacement for the low cortisol levels. I follow up again in November, if he refuses to change anything I'll be finding myself a new endocrinologist. I've been on my tumor med for over a year and the tumor hasn't grown, but it also hasn't shrunk any, either. My prolactin levels are basically the only hormone my body is stable with and that's probably due to the medicine. Is the medicine suppressing the other hormones or is it the tumor? I ask my doc that and never get a straight-on answer because the endocrine system is so complex and I don't think he truly knows what is happening. He may be an endocrinologist, but he specializes in diabetes and metabolism disorders. I need a doc that specializes in the pituitary, hypopituitarism to be exact. The only docs that I can find that focus in the that field alone are out at the Mayo Clinic. If this continues to go untreated, my life expectancy is 87% less of someone who doesn't suffer from the disease. If this were to get treated, would be GI symptoms ease up?
I've been in a vicious cycle with that whole thing as well. I'll go days with barely an appetite, forcing myself to eat or drink anything. Then I will wake up and be so hungry all day long and my appetite feels insatiable. So, I end up overdoing it (which my overdoing it is me barely getting in 600 calories in a day) and I completely wreck my stomach, leaving me feel sick and yucky with no appetite again. Then when it comes back, I overdo it again and the cycle repeats over and over. I had a small bowel follow through scheduled for yesterday morning and had to reschedule due to waking up with a horrible headache because I'm long overdue for a chiropractor visit for my neck problems. I've been having a sometimes dull, sometimes sharp pain in my lower right quadrant of my stomach, down near the pelvis. It gets so bad sometimes it wakes me up at night. So it's possible I have a stricture or a kink in the intestine where things seem to be getting stuck. So that was rescheduled for Tuesday. I'm hoping for normal results so I don't have to worry about surgery. If I need surgery, that will totally fuck up our Disney plans for the summer. So, obviously surgery is gonna happen because why would anything good actually happen to this family? Seriously, things have been so fucked up.
With all of my health issues aside, my father-in-law was laid off. He's having a hard time finding another job making what he was making. Things with Jenna have been approving. Speaking of my Jenna, she seems to be doing pretty well in kindergarten. She's getting a little extra help and some days she is more compliant and more confident in herself, and days where she is so defiant and oppositional that she refuses to do any work and argues with me she doesn't know any of it. But, she's seeing the school therapist twice a week, has a teacher that comes in to her classroom during reading time to help give her more individual attention when it comes to learning to read. Plus, she's involved in a group twice a week in school to help handle her feelings, teaches her how to follow rules and make and maintain healthy friendships. On the 28th, a parent support group will be started for the parents that have kids involved in this program so I'm anxious for that to start. Gianna was also placed in something called a Guidance Group. If you watch the show The Middle, the youngest child Brick is involved in a social skills group that teaches appropriate ways to interact with kids his own age. Gianna is basically in the same thing. We spent so much time and effort focusing on Jenna that we failed to recognize some red flags in Gianna. She's a very friendly, happy little girl so I never thought to much of her quirks. She has a very high self esteem, a little too high. She doesn't interact appropriately with kids her own age and is also very immature socially for her age. She is very bright, reading beyond a second grade level yet has a hard time doing simple tasks such as washing her own hair without assistance. After a meeting with the guidance counselor and her teacher, they think it would be a good idea to have her evaluated for Aspergers. And as soon as they even said that, it all clicked. She is a female child version of Sheldon. She doesn't understand sarcasm, she doesn't know how to joke around appropriately and when she tries to make a joke, it makes no sense. If you try to tell her a joke, you have to explain why it's funny. If you want to have a conversation with her, it has to be about what she wants to talk about and it's almost always the same things. She has no interest in other peoples feelings, or maybe she doesn't understand empathy? I can be crying because of pain or being sick and she doesn't pick up on that. Playing at a friends house, her friend fell off the swingset and hurt her leg. Instead of Gianna asking if her friend was alright, she asked her to move so she could use the swing lol. So, I do very well believe she has Aspergers. She feels so disconnected sometimes. She doesn't like hugs or kisses, she won't tell me if something is bothering her. Then I have Jenna, who has no problem telling you when she's having a problem because she gets so explosive. But also loves to cuddle. She's very oppositional, Gianna is very easy going and compliant and would rather you do everything for her where as Jenna is so very insistent on doing everything herself. They are total opposites lol.
So with all of this going on, it's no wonder I constantly feel stressed out and depressed. It literally feels like I'm just waiting to die. And each of my girls have some issue because they have a crazy mom. Jenna's therapist is suggesting we monitor her closely for bipolar disorder. She's too young for a diagnosis, but it's in the family and she already has many symptoms of it so it's possible she has that on top of the PDD and ODD.
Blah. Well, I suppose I need to try to get some sleep if I plan on being somewhat functioning tomorrow. I have to go to Walmart for a birthday card and take Gianna to her friends birthday party. I'm anxious to see how she interacts with the others at the party. So, on that last random thought, I'm out.
Saturday, July 12, 2014
Halfway Over
I still can't get over that we are nearly into the second week of July already. Summer is almost halfway over and it honestly feels like it just began! It hit me tonight as me and Jenna were snuggling in her bed as I sang her lullabies to her - that within a few more weeks, my baby will officially be a kindergartener and my snugglebug will be away from me most of the day. It's going to be a huge adjustment, one that I'm not particularly looking forward to. But at the same time, I can't wait for both girls to be in school and to get actual time to myself. It will be awesome for about a week, then I'm sure things will start getting lonely. I would love to be able to get a part-time job or return to school, but I'm facing reality and realizing I may not be able to keep a job with the way my health is and I really don't think anything is going to get better for me.
I saw the reproductive endocrinologist yesterday for my follow-up to my blood tests and ultrasound. Everything was exactly what he suspected. My estrogen levels were very low, and my uterus and ovaries have gotten smaller in comparison to past ultrasounds. He explained basically that my brain isn't sending the signals to my ovaries to create the hormones needed to start ovulation and without ovulation, you can't have a cycle. So, he thinks birth control is a good option right now even though I'm infertile and don't need the pregnancy protection. But, if I don't take some type of hormonal replacement, then he said I have about an 80% chance of developing osteoporosis by the age of 40 and the risk will go up as I get older. I've already got too much on my plate to deal with and don't want to add that to the mix!
I'm also back to dropping weight again. It kinda stopped for awhile, but I'm 83 pounds and every specialist I see tells me I need to gain weight. No shit. It's hard though. For one, I have an eating disorder working against me and no matter how much weight I KNOW I need to gain, as soon as that scale will budge, I will freak out. Another huge factor in it is if I eat too much, I literally feel sick and if I really overdo it, it will all come back up. Thanks for that, gastroparesis.
My PCP was joking around with me about how I need to be in medical books or something lol. I'm probably the only 27 year old female, with an ileostomy with dysautonomia, gastroparesis, hypopituitarism, hypogonadism, a prolactinoma and slow motility on top of it all lol. Nothing on me wants to work and it's probably all of the dysautonomia and prolactinoma's fault. Oh well....still trying to accept everything. At least it ain't a cancer diagnosis. I'm sure that will come later, though haha.
I'm looking forward to next week. The 16th I'm having my day at Kennywood with Gianna. I am looking forward to it, I love Kennywood and I love being the one that Gianna gets to experience the big rides with. I am, however, not looking forward to the time following Kennywood. My spine sticks out and its worse when I sit. At Idlewild, the rides are way more mild than most of the rides at Kennywood, but riding those rides at Idlewild left the spots along my spine, tailbone and shoulderblades pretty bruised and sore. I can't imagine the damage that will be done when I'm being thrashed around on a rollercoaster =/ Dave made a joke about how we will buy Dr. Scholl's gel pads and just tape them to my back and ass to absorb the shock and hopefully avoid bruising lol. It's kind of sad. I've never had skinny girl problems before. I hope the birth control will help me put on a few pounds. I guess we will see. I go for repeat bloodwork in 3 months to see where my estrogen levels are then. I'm on my second day of the pill and they increase my nausea...giving it a week and if it keeps it up, I'll see if I can get it switched to something different.
Well, that's about all for my update. I'm gonna go start the next book in this series I've started. It's the Fallen series by Lauren Kate and I absolutely love it. I read the first book as an e-library book and finished it in a day and a half and I couldn't wait to get Torment so I bought the book on my Nook lol. I'm sure I will be up late tonight and be extra cranky for church in the morning haha. Later!
I saw the reproductive endocrinologist yesterday for my follow-up to my blood tests and ultrasound. Everything was exactly what he suspected. My estrogen levels were very low, and my uterus and ovaries have gotten smaller in comparison to past ultrasounds. He explained basically that my brain isn't sending the signals to my ovaries to create the hormones needed to start ovulation and without ovulation, you can't have a cycle. So, he thinks birth control is a good option right now even though I'm infertile and don't need the pregnancy protection. But, if I don't take some type of hormonal replacement, then he said I have about an 80% chance of developing osteoporosis by the age of 40 and the risk will go up as I get older. I've already got too much on my plate to deal with and don't want to add that to the mix!
I'm also back to dropping weight again. It kinda stopped for awhile, but I'm 83 pounds and every specialist I see tells me I need to gain weight. No shit. It's hard though. For one, I have an eating disorder working against me and no matter how much weight I KNOW I need to gain, as soon as that scale will budge, I will freak out. Another huge factor in it is if I eat too much, I literally feel sick and if I really overdo it, it will all come back up. Thanks for that, gastroparesis.
My PCP was joking around with me about how I need to be in medical books or something lol. I'm probably the only 27 year old female, with an ileostomy with dysautonomia, gastroparesis, hypopituitarism, hypogonadism, a prolactinoma and slow motility on top of it all lol. Nothing on me wants to work and it's probably all of the dysautonomia and prolactinoma's fault. Oh well....still trying to accept everything. At least it ain't a cancer diagnosis. I'm sure that will come later, though haha.
I'm looking forward to next week. The 16th I'm having my day at Kennywood with Gianna. I am looking forward to it, I love Kennywood and I love being the one that Gianna gets to experience the big rides with. I am, however, not looking forward to the time following Kennywood. My spine sticks out and its worse when I sit. At Idlewild, the rides are way more mild than most of the rides at Kennywood, but riding those rides at Idlewild left the spots along my spine, tailbone and shoulderblades pretty bruised and sore. I can't imagine the damage that will be done when I'm being thrashed around on a rollercoaster =/ Dave made a joke about how we will buy Dr. Scholl's gel pads and just tape them to my back and ass to absorb the shock and hopefully avoid bruising lol. It's kind of sad. I've never had skinny girl problems before. I hope the birth control will help me put on a few pounds. I guess we will see. I go for repeat bloodwork in 3 months to see where my estrogen levels are then. I'm on my second day of the pill and they increase my nausea...giving it a week and if it keeps it up, I'll see if I can get it switched to something different.
Well, that's about all for my update. I'm gonna go start the next book in this series I've started. It's the Fallen series by Lauren Kate and I absolutely love it. I read the first book as an e-library book and finished it in a day and a half and I couldn't wait to get Torment so I bought the book on my Nook lol. I'm sure I will be up late tonight and be extra cranky for church in the morning haha. Later!
Saturday, June 28, 2014
Another Useless Update
There hasn't been much to write about on here and though no one really reads this thing, sometimes I just get in the mood to write and tonight I'm feeling one of those moods because I'm extremely bored and lonely.
I can't believe in just a few days we will be into July. It's absolutely insane how fast this summer is flying by and I don't know how I feel about it. I want it to last because I fucking hate winter and the cold and the heat of summer makes me feel happy. But, my kids have been at each other's throats since about the 2nd day of summer break and I'm tired of playing referee. Sometimes, it's hilarious seeing how much they are like me....totally stubborn. I had something happen on 2 different occasions and as much as I was annoyed, I couldn't help but laugh. Jenna comes out crying Gianna had choked her and of course, Gianna denied it. So, I made them BOTH sit on the couch, tv off, no games, just silence until someone came forward with the truth. Obviously Jenna was fine and it wasn't a big deal, but they needed to learn a lesson on lying. I told them as soon as I was told the truth, they can get off the couch and resume playing in the bedroom. They sat on that couch for almost 2 hours, going back and forth about how Gianna did, and her still denying it and both swear to me they are telling the truth lol. Finally, almost 2 hours and 2 Tylenol later, Gianna FINALLY confessed she did in fact choke Jenna. Then this happened yet again about a week later, but involved Gianna pushing Jenna and we sat on the couch again for almost an hour. She is so stubborn like her mama that I just have to laugh. It's like she is the carbon-copy of me. She looks exactly the way I did at her age and she acts just like me. Jenna is her daddy through and through. They are my world, even though I wanna mail them to Alaska or drop them off at some fancy neighborhood with signs around their necks "FREE TO A GOOD HOME" lol.
On the health front, things are the same, but just finding more stuff out. I have the dysautonomia. I got a diagnosis, but there's nothing they can do for it. At least I can put a name to it. I'm also seeing a reproductive endocrinologist to find out why my monthly visitor hasn't visited in over a year. I go for an ultrasound and blood work on Tuesday. I was given Provera a while ago, which is a high dosage of progesterone to force a period to come on. And it didn't work, because my body isn't making the estrogen needed to make it work. So, basically my ovaries have shut down? Idk. I'll find more out about that after the ultrasound and at the follow up appt on the 11th. My weight is still dropping, but has slowed. It's funny because last year I couldn't really keep any food down at all and this summer most of what I eat stays down as long as I don't eat much. But I weigh significantly less this summer. 84 pounds I'm at now. Pant size 0 are too large, I'm in a 10/12 in kid size! As if I didn't confuse people enough on looking too young, let my kid pants further confuse you lol.
July 22nd is mine and Gianna's Kennywood day. I know that was random, but it's how my brain works lol. I asked her to pick something me and her can do together since we rarely have one-on-one because of her clingy sister. So, she chose Kennywood. She wants to try the Exterminator and if she is tall enough, she wants to go on the phantom lol. It's funny my 7 year old is more brave than my 32 year old husband lol. We even bought her little wedge sandals for the day so she can have a little extra height on her side so I'm pretty sure they will bring her up to 48 inches. She's gonna be tiny like her mama. She is about 47 1/2 inches normally and Jenna is about 43 inches. I can't believe my baby is gonna be going to kindergarten :( but anyways, back to Kennywood. It's all she talks about, and I'm always getting asked "Mom can we ride *insert ride name here*?" Even though I always reply we will ride whatever she wants as long as she is tall enough for it. On Monday we are doing Idlewild as a family thing. But, I'm way more excited for Kennywood with just my Gianna. July 22nd seems so far away :(
I guess I did enough rambling. I'm just lonely. Dave has been forced over every day on this 3-11 shift and I really don't have any friends anymore. Nobody I can call and be like "hey wanna meet up here in an hour?" The friends I did have don't really talk to me anymore. I don't know if my being sick makes them feel uncomfortable. Yeah, I may not feel well a lot of the time but it's a feeling I've grown accustomed to and feeling shitty is my new normal. I let it control my life awhile ago, but not anymore. I want to have friends again and not be stuck at home whenever I have this beautiful Ford Fusion sitting in my drive way, just waiting for it's next destination. But, for now I have my babies and they are all I really ever need.
I suppose I should try to sleep, which will end up in failure. I am exhausted through the days, and get horrible insomnia at night. When I do finally fall asleep, I'm only asleep for 2-3 hours then I struggle to go back to sleep. It's sad when it's summer break and I'm still awake at 7 before my kids and can't sleep in anymore. But that time to myself is nice. I drink my coffee and read a book in peace. I just finished The Fault In Our Stars. It took me a whole day to finish. I couldn't put it down! I kept thinking though, this is gonna be my future. I have everything else wrong, so I'm just waiting for that day I get a cancer diagnosis from all of the x-rays and CT scans and MRIs I get put through. Who knows, I may already have it and it hasn't been found yet. Would explain my weight loss and the shedding of my hair. (Though I was told my non-existent estrogen levels is what's causing that) maybe one day, they can get everything fixed and I can go back to normal. But, for now, I'm getting used to my "new" normal.
Ta.
I can't believe in just a few days we will be into July. It's absolutely insane how fast this summer is flying by and I don't know how I feel about it. I want it to last because I fucking hate winter and the cold and the heat of summer makes me feel happy. But, my kids have been at each other's throats since about the 2nd day of summer break and I'm tired of playing referee. Sometimes, it's hilarious seeing how much they are like me....totally stubborn. I had something happen on 2 different occasions and as much as I was annoyed, I couldn't help but laugh. Jenna comes out crying Gianna had choked her and of course, Gianna denied it. So, I made them BOTH sit on the couch, tv off, no games, just silence until someone came forward with the truth. Obviously Jenna was fine and it wasn't a big deal, but they needed to learn a lesson on lying. I told them as soon as I was told the truth, they can get off the couch and resume playing in the bedroom. They sat on that couch for almost 2 hours, going back and forth about how Gianna did, and her still denying it and both swear to me they are telling the truth lol. Finally, almost 2 hours and 2 Tylenol later, Gianna FINALLY confessed she did in fact choke Jenna. Then this happened yet again about a week later, but involved Gianna pushing Jenna and we sat on the couch again for almost an hour. She is so stubborn like her mama that I just have to laugh. It's like she is the carbon-copy of me. She looks exactly the way I did at her age and she acts just like me. Jenna is her daddy through and through. They are my world, even though I wanna mail them to Alaska or drop them off at some fancy neighborhood with signs around their necks "FREE TO A GOOD HOME" lol.
On the health front, things are the same, but just finding more stuff out. I have the dysautonomia. I got a diagnosis, but there's nothing they can do for it. At least I can put a name to it. I'm also seeing a reproductive endocrinologist to find out why my monthly visitor hasn't visited in over a year. I go for an ultrasound and blood work on Tuesday. I was given Provera a while ago, which is a high dosage of progesterone to force a period to come on. And it didn't work, because my body isn't making the estrogen needed to make it work. So, basically my ovaries have shut down? Idk. I'll find more out about that after the ultrasound and at the follow up appt on the 11th. My weight is still dropping, but has slowed. It's funny because last year I couldn't really keep any food down at all and this summer most of what I eat stays down as long as I don't eat much. But I weigh significantly less this summer. 84 pounds I'm at now. Pant size 0 are too large, I'm in a 10/12 in kid size! As if I didn't confuse people enough on looking too young, let my kid pants further confuse you lol.
July 22nd is mine and Gianna's Kennywood day. I know that was random, but it's how my brain works lol. I asked her to pick something me and her can do together since we rarely have one-on-one because of her clingy sister. So, she chose Kennywood. She wants to try the Exterminator and if she is tall enough, she wants to go on the phantom lol. It's funny my 7 year old is more brave than my 32 year old husband lol. We even bought her little wedge sandals for the day so she can have a little extra height on her side so I'm pretty sure they will bring her up to 48 inches. She's gonna be tiny like her mama. She is about 47 1/2 inches normally and Jenna is about 43 inches. I can't believe my baby is gonna be going to kindergarten :( but anyways, back to Kennywood. It's all she talks about, and I'm always getting asked "Mom can we ride *insert ride name here*?" Even though I always reply we will ride whatever she wants as long as she is tall enough for it. On Monday we are doing Idlewild as a family thing. But, I'm way more excited for Kennywood with just my Gianna. July 22nd seems so far away :(
I guess I did enough rambling. I'm just lonely. Dave has been forced over every day on this 3-11 shift and I really don't have any friends anymore. Nobody I can call and be like "hey wanna meet up here in an hour?" The friends I did have don't really talk to me anymore. I don't know if my being sick makes them feel uncomfortable. Yeah, I may not feel well a lot of the time but it's a feeling I've grown accustomed to and feeling shitty is my new normal. I let it control my life awhile ago, but not anymore. I want to have friends again and not be stuck at home whenever I have this beautiful Ford Fusion sitting in my drive way, just waiting for it's next destination. But, for now I have my babies and they are all I really ever need.
I suppose I should try to sleep, which will end up in failure. I am exhausted through the days, and get horrible insomnia at night. When I do finally fall asleep, I'm only asleep for 2-3 hours then I struggle to go back to sleep. It's sad when it's summer break and I'm still awake at 7 before my kids and can't sleep in anymore. But that time to myself is nice. I drink my coffee and read a book in peace. I just finished The Fault In Our Stars. It took me a whole day to finish. I couldn't put it down! I kept thinking though, this is gonna be my future. I have everything else wrong, so I'm just waiting for that day I get a cancer diagnosis from all of the x-rays and CT scans and MRIs I get put through. Who knows, I may already have it and it hasn't been found yet. Would explain my weight loss and the shedding of my hair. (Though I was told my non-existent estrogen levels is what's causing that) maybe one day, they can get everything fixed and I can go back to normal. But, for now, I'm getting used to my "new" normal.
Ta.
Monday, May 26, 2014
Feeling Kinda Lucky
So today marks mine and Dave's 7 year wedding anniversary. He works afternoon shift, but we celebrated on Saturday. This whole weekend it feels like I ate entirely too much and my stomach is bloated and crampy as I struggle to digest and pass whatever has been sitting in my stomach. I think for the next few days, I'll be putting myself on a soft/liquid diet, like what I get whenever I'm in the hospital.
I've been having some pretty rough days, emotionally, these past few weeks. I thought I could take myself off of my antidepressant and see how I would do. Apparently, not too well. I was back to suicidal thoughts and so down and upset all of the time. But tonight, as I was saying good night to my kids, I realized all of the good things I have in my life that I have been forgetting about. It's the small things that happen in my daily life. Snuggling with my kids as we watch a movie. Whenever Jenna will hop in my lap and wrap her arms around my neck and smother me in her kisses as she tells me how much she loves me. I have a supportive husband that doesn't freak out whenever we wake at 3 am and the bed is covered in my crap because I had a blowout. Even though I feel sick and miserable and in some type of pain most of my days, these little things make me feel lucky to be here. So what if I'm stuck with an ostomy bag and a half-functioning digestive system and a central nervous system that doesn't function the way that it should. I have great kids, a great husband, a roof over my head, a soft bed to sleep in at night and food to stick into my stomach, whether it wants food or not lol I need to start remembering these good things instead of dwelling over the negative. I need to let go of the thoughts that consume my head about how much different my life is and how grossly skinny I look. I need to start trusting God more with my life and health and whenever I see the doctor on Thursday to discuss a feeding tube, I need to be open about the idea if it will be the best thing for me. I have a family that loves me no matter what, and after everything me and Dave have been through, I know who my true friends are.
Tonight, despite my illness and the stomach pains I'm experiencing as I type this, I'm feeling like the luckiest woman in the world. I hope this feeling lasts.
I've been having some pretty rough days, emotionally, these past few weeks. I thought I could take myself off of my antidepressant and see how I would do. Apparently, not too well. I was back to suicidal thoughts and so down and upset all of the time. But tonight, as I was saying good night to my kids, I realized all of the good things I have in my life that I have been forgetting about. It's the small things that happen in my daily life. Snuggling with my kids as we watch a movie. Whenever Jenna will hop in my lap and wrap her arms around my neck and smother me in her kisses as she tells me how much she loves me. I have a supportive husband that doesn't freak out whenever we wake at 3 am and the bed is covered in my crap because I had a blowout. Even though I feel sick and miserable and in some type of pain most of my days, these little things make me feel lucky to be here. So what if I'm stuck with an ostomy bag and a half-functioning digestive system and a central nervous system that doesn't function the way that it should. I have great kids, a great husband, a roof over my head, a soft bed to sleep in at night and food to stick into my stomach, whether it wants food or not lol I need to start remembering these good things instead of dwelling over the negative. I need to let go of the thoughts that consume my head about how much different my life is and how grossly skinny I look. I need to start trusting God more with my life and health and whenever I see the doctor on Thursday to discuss a feeding tube, I need to be open about the idea if it will be the best thing for me. I have a family that loves me no matter what, and after everything me and Dave have been through, I know who my true friends are.
Tonight, despite my illness and the stomach pains I'm experiencing as I type this, I'm feeling like the luckiest woman in the world. I hope this feeling lasts.
Thursday, April 24, 2014
Hope?
I am feeling somewhat hopeful tonight. I know I haven't been writing a whole lot on here and mostly because between my kids, housework and not feeling well, I just never feel like staring at my ipad to write anything, plus I feel like I never have anything interesting to write about. But tonight, I DO have something interesting.
My motility doctor has been following my case very closely, especially now that my weight is 87 pounds and I'm struggling to put any back on. I was just back in the hospital a couple of weeks ago for the same problems I always have. Severe stomach pains, no stoma output and nausea/vomiting. I was taught how to give myself am enema using a catheter through the stoma since looking at my X-rays, my doc has noticed stool build-up and dilated loops of small intestine around the areas where I'm having severe pain. So whenever I notice an "attack" coming on, I can give myself a little flush out and hopefully avoid a hospital stay. I'm also taking Miralax twice a day to keep my stool mainly liquid since it's usually thick and causes problems just from that. Anywho, I'm getting off track.
I had a follow-up with my doc from my last hospital visit. I had brought my friend along with me (she was my ride in). While the doc was in the room, she asked me if I had ever mentioned my other problems not relating to GI function with him, which I haven't. His curiosity got piqued and asked me to tell him more about my other problems. I had mentioned my blood pressure issues and how I will faint upon standing sometimes but almost always get dizzy and close to passing out from it. We talked about how I'm always cold and have low body temp and he asked if I sweat, which I really don't even if I'm hot. I told him it's been almost a year since I've had a menstrual cycle. And my horrible fatigue that I will experience. He had me fill out a medical release authorization to get the results of my tilt table test that I had failed in December and to get my lab results from my endocrinologist.
So, he is thinking all of my issues ARE connected, just like Dave suspected. I am being tested officially for dysautonomia. He said that the blood test for that isn't 100% reliable! that sometimes people can have normal results and still have it. I am also being tested for something called Addison's disease. It's basically when the adrenal glands aren't working sufficiently, if at all. Both diseases I have the majority of the symptoms for. Addison's disease has a symptom where you have intense salt cravings. I have to keep a pack of pretzel salt on hand and just lick salt off of my hand. Also reading Addison's can be caused by autonomic diseases, so it can even be possible I have both. Addison's has a treatment plan to help with symptoms, I would basically be on 2 different types of steroids for my whole life. It would supplement the hormones the adrenals aren't producing. The dysautonomia is just treating symptoms and no real treatment or cure for it. I don't even care right now that I more than likely have one or both of these diseases. I am happy to finally have hope of knowing what is happening to me and why! Doing my own internet research I find that people with Addison's can sometimes have adrenal crisis during times of body stress. Reading about what that is, I am pretty sure I've had that happen to me at least 3 times that I can remember the first time being whenever Gianna was just a baby. I am anxious to hear what the results of the blood work will be and what steps need to be taken next. I am kinda convinced that it is Addison's disease, though. And only me would have a rare disease that only affects 1 out 100,000 people lol. I just want to be able to put a name to what is happening or at least know why it's happening and if I should expect the rest of my life to be more or worse than what it is now.
I am off to bed now, though. Gotta be up early to drive my dad to the hospital for his surgery. I hate waking up early lol.
My motility doctor has been following my case very closely, especially now that my weight is 87 pounds and I'm struggling to put any back on. I was just back in the hospital a couple of weeks ago for the same problems I always have. Severe stomach pains, no stoma output and nausea/vomiting. I was taught how to give myself am enema using a catheter through the stoma since looking at my X-rays, my doc has noticed stool build-up and dilated loops of small intestine around the areas where I'm having severe pain. So whenever I notice an "attack" coming on, I can give myself a little flush out and hopefully avoid a hospital stay. I'm also taking Miralax twice a day to keep my stool mainly liquid since it's usually thick and causes problems just from that. Anywho, I'm getting off track.
I had a follow-up with my doc from my last hospital visit. I had brought my friend along with me (she was my ride in). While the doc was in the room, she asked me if I had ever mentioned my other problems not relating to GI function with him, which I haven't. His curiosity got piqued and asked me to tell him more about my other problems. I had mentioned my blood pressure issues and how I will faint upon standing sometimes but almost always get dizzy and close to passing out from it. We talked about how I'm always cold and have low body temp and he asked if I sweat, which I really don't even if I'm hot. I told him it's been almost a year since I've had a menstrual cycle. And my horrible fatigue that I will experience. He had me fill out a medical release authorization to get the results of my tilt table test that I had failed in December and to get my lab results from my endocrinologist.
So, he is thinking all of my issues ARE connected, just like Dave suspected. I am being tested officially for dysautonomia. He said that the blood test for that isn't 100% reliable! that sometimes people can have normal results and still have it. I am also being tested for something called Addison's disease. It's basically when the adrenal glands aren't working sufficiently, if at all. Both diseases I have the majority of the symptoms for. Addison's disease has a symptom where you have intense salt cravings. I have to keep a pack of pretzel salt on hand and just lick salt off of my hand. Also reading Addison's can be caused by autonomic diseases, so it can even be possible I have both. Addison's has a treatment plan to help with symptoms, I would basically be on 2 different types of steroids for my whole life. It would supplement the hormones the adrenals aren't producing. The dysautonomia is just treating symptoms and no real treatment or cure for it. I don't even care right now that I more than likely have one or both of these diseases. I am happy to finally have hope of knowing what is happening to me and why! Doing my own internet research I find that people with Addison's can sometimes have adrenal crisis during times of body stress. Reading about what that is, I am pretty sure I've had that happen to me at least 3 times that I can remember the first time being whenever Gianna was just a baby. I am anxious to hear what the results of the blood work will be and what steps need to be taken next. I am kinda convinced that it is Addison's disease, though. And only me would have a rare disease that only affects 1 out 100,000 people lol. I just want to be able to put a name to what is happening or at least know why it's happening and if I should expect the rest of my life to be more or worse than what it is now.
I am off to bed now, though. Gotta be up early to drive my dad to the hospital for his surgery. I hate waking up early lol.
Tuesday, March 18, 2014
Where is spring??
I am seriously over this cold weather. I was never a fan of winter to begin with but this one seems never ending. We get teased with one or two nice days then a week of freezing temps. Or the sun will be out and feel warm, but then the wind kicks up and stings your face. Bring on the 100+ degree days!
I wish I had good stuff to report on relating to my health, but that's a negative. I'm still struggling with the same crap I was complaining about months ago. My hair is still falling out, my weight is still dropping and I'm still suffering from pseudo obstructions. I did finally get to see a doctor, though. But, I still don't know what's going on. They did bloodwork, which I can view online but I don't know what any of it means. My B12 is high, which means there's a problem because it shouldn't get high. My iron levels are normal but the iron saturation levels are low. My white blood cell count is low. I don't know what any of that is supposed to mean and when I research it online, I end up scaring myself because the one condition all of these levels results have in common is leukemia. These docs better get off their bums and find out what the hell is going on with me. My motility doc put me on a new med, that isn't working. He also wants me to take a medicine to make me gain weight, but if it's just the pill causing the weight gain and not food and calories and nutrition, what's the point? I just wish I could eat normal and not suffer.
My babies birthdays already came and went. I still can't believe they are 7 and 5 :( I hate how fast time is going. Things just need to slow down a little, or at the very least, I wish I would start feeling better so I can really enjoy them more before they end up graduating high school and leaving me. These girls are my whole entire world and they are just growing up way too fast.
That's about it for this pointless update. I'm exhausted and think I need a nap, of coffee. I don't think Jenna will let me nap plus I'll be getting Gianna off the bus shortly. Oh well, coffee it is.
I wish I had good stuff to report on relating to my health, but that's a negative. I'm still struggling with the same crap I was complaining about months ago. My hair is still falling out, my weight is still dropping and I'm still suffering from pseudo obstructions. I did finally get to see a doctor, though. But, I still don't know what's going on. They did bloodwork, which I can view online but I don't know what any of it means. My B12 is high, which means there's a problem because it shouldn't get high. My iron levels are normal but the iron saturation levels are low. My white blood cell count is low. I don't know what any of that is supposed to mean and when I research it online, I end up scaring myself because the one condition all of these levels results have in common is leukemia. These docs better get off their bums and find out what the hell is going on with me. My motility doc put me on a new med, that isn't working. He also wants me to take a medicine to make me gain weight, but if it's just the pill causing the weight gain and not food and calories and nutrition, what's the point? I just wish I could eat normal and not suffer.
My babies birthdays already came and went. I still can't believe they are 7 and 5 :( I hate how fast time is going. Things just need to slow down a little, or at the very least, I wish I would start feeling better so I can really enjoy them more before they end up graduating high school and leaving me. These girls are my whole entire world and they are just growing up way too fast.
That's about it for this pointless update. I'm exhausted and think I need a nap, of coffee. I don't think Jenna will let me nap plus I'll be getting Gianna off the bus shortly. Oh well, coffee it is.
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