I always seem to be inspired to post a blog entry absurdly late. Maybe I'm channeling my inner student - writing papers between midnight and 3 am...
DISCLAIMER: I 'm exhasuted so please excuse the typos, poor word choices, missing punctuation, extra punctuation, etc ..........
This is all over the place but I divided this blog with updates
PAIN
I started this blog because I wanted to write about the trials and tribulations of living with NF1, particularly the pain it causes me.
My pain disappeared during my pregnancy. I got pregnant in May of 2013 and the pain stopped by August. I was PAIN FREE in my pelvic region (where my most bothersome tumor is) until June 2014! It started off pretty mild, and now it's back to 100-alarm fire pain. I'm back on my pain medication, and slowly my tolerance is building back up...which is good because it's incredibly depressing and upsetting to pretty much be conked out when I have a baby to take care of. Thankfully, John is a good dad and he is supportive.
I am currently in my worst pain spell since probably April of 2013. I'm trying to learn how to get through it. I can't ignore it.. I just can't. I can't function. Thankfully the medication helps, but it's hard. I want to play, but my body just tells me to curl up and wait for the medicine to kick in. Thankfully these spells last a couple of weeks MAX and then I'm fine...
PARENTING
__
On Saturday Oliver turns TEN MONTHS OLD. I can't believe it! He is growing well, and is SUCH a joy. He's army crawling, and he's REALLY fast... we've babyproofed all we could for now, but I know we'll think of more ways. He's so funny. He likes it when I take a blanket and cover him with it, and then lift the blanket up quickly....I need to get a video of his sheer joy with this. When I stop, he gets PISSED. IT's a good way to tire him out when he just won't go to sleep!
I still have all of the same sentiments as I did in my last entry. I'm just so lucky I can be a mom. The only down is dealing with the exhaustion when trying to get up for work. I am oversleeping more, and therefore, coming home later since I go in later. This is really hard because I need to spend time with him in order to not be so depressed but our days are getting shorter and shorter. I do my best to be the one who gets up to feed him (John makes the bottles, I feed). I hold him for as long as I can. I just can't stop cuddling him, kissing him, stroking his hair, rubbing his back. My precious baby. Days at work have lately been stressful but instead of being in a foul mood about it, I look at pictures of Oliver and it helps a lot :)
My breast milk supply is GONE. It dissipated after I lost my job. I was thankfully unemployed for a short period of time (ugh to layoffs!) but it still wrecked havoc on my body. While I was pretty depressed about it, I was also relieved. It's so hard to explain.
I am finally able to get out more now that I don't have engorged breasts. But the downside to that is more time away from Oliver... but I need my time, too! Sometimes I work extra long between Mon and Thurs so I can get off work early on Friday- John and I have been able to have a few dates that way :) I went to see Swan Lake with my BFF last week. And in December, John and I will see The Nutcracker.
It's hard to really get out when we have no babysitter. My friends have offered, I just feel weird. Not that I dont' trust them- I just feel bad we'd inconvenience them. I need to get over that!
In summary- I love my baby and I love my husband. I love my family. I am very very happy.
A HEALTH SCARE
--
In October I had my yearly upper endoscopy. It was thought that I (came down with is the wrong word but you get the sentiment) with Barrett's Esophagus. There were changes in the lining of my esophagus that looked like it, but the path report came back saying that there was no "intestinal metaplasia". I spoke with one of the docs I work for (he is an esophagus expert) and he said that while some BE cases can have no dysplasia, if the path report said no intestinal metaplasia, then there is no BE. I want to talk to my doctor though because he saw what looked like it so I Want to know what that means for me. I was also told to be weary of my acid reflux medicine because it could cause my GISTS to enlarge. SO I REALLY NEED TO SEE HIM BUT HIS ADMIN SUCKS. Next week will be my quest to get an appointment. He really believes a total gastrectomy will save my esopahgus from future damage , future cancers. Otherwise, I'm healthy. I need to get tested for b12 and iron levels because on top of being exhausted from parenting, I'm just really energy drained. I think a shot and infusion of energy would help a lot! It's hard to get thorugh my PCP too because pills are generally the answer for most poeple- just not for me. And if she DID order the infusion of iron like I asked for a while ago, nobody told me the order was ready. UGH. So I'm a continual health crisis haha.
A POSSIBLE NF BABY
--
Finally-- in late September, Oliver joined me to see my NF doctor. He checked out Oliver under a black light and lo and behold- cafe au lait spots. 2 on his belly, 2 on each arm and 2 on one leg. Tehre is a chance some of those are scars from eczema- only time will tell. But he has many features that indicate he may have it: short stature, a big head, and spots. IF he does he does, but I hope he doesn't. He will be seen again in March to see if spots are still there. I will try to get a pic of the spots showed under black light!
Well, it's almost 1 am and I should go to bed. Long day tomorrow. I just thought I'd update. Sorry this is poorly written, but I just needed to get it out.
DISCLAIMER: I 'm exhasuted so please excuse the typos, poor word choices, missing punctuation, extra punctuation, etc ..........
This is all over the place but I divided this blog with updates
PAIN
I started this blog because I wanted to write about the trials and tribulations of living with NF1, particularly the pain it causes me.
My pain disappeared during my pregnancy. I got pregnant in May of 2013 and the pain stopped by August. I was PAIN FREE in my pelvic region (where my most bothersome tumor is) until June 2014! It started off pretty mild, and now it's back to 100-alarm fire pain. I'm back on my pain medication, and slowly my tolerance is building back up...which is good because it's incredibly depressing and upsetting to pretty much be conked out when I have a baby to take care of. Thankfully, John is a good dad and he is supportive.
I am currently in my worst pain spell since probably April of 2013. I'm trying to learn how to get through it. I can't ignore it.. I just can't. I can't function. Thankfully the medication helps, but it's hard. I want to play, but my body just tells me to curl up and wait for the medicine to kick in. Thankfully these spells last a couple of weeks MAX and then I'm fine...
PARENTING
__
On Saturday Oliver turns TEN MONTHS OLD. I can't believe it! He is growing well, and is SUCH a joy. He's army crawling, and he's REALLY fast... we've babyproofed all we could for now, but I know we'll think of more ways. He's so funny. He likes it when I take a blanket and cover him with it, and then lift the blanket up quickly....I need to get a video of his sheer joy with this. When I stop, he gets PISSED. IT's a good way to tire him out when he just won't go to sleep!
I still have all of the same sentiments as I did in my last entry. I'm just so lucky I can be a mom. The only down is dealing with the exhaustion when trying to get up for work. I am oversleeping more, and therefore, coming home later since I go in later. This is really hard because I need to spend time with him in order to not be so depressed but our days are getting shorter and shorter. I do my best to be the one who gets up to feed him (John makes the bottles, I feed). I hold him for as long as I can. I just can't stop cuddling him, kissing him, stroking his hair, rubbing his back. My precious baby. Days at work have lately been stressful but instead of being in a foul mood about it, I look at pictures of Oliver and it helps a lot :)
My breast milk supply is GONE. It dissipated after I lost my job. I was thankfully unemployed for a short period of time (ugh to layoffs!) but it still wrecked havoc on my body. While I was pretty depressed about it, I was also relieved. It's so hard to explain.
I am finally able to get out more now that I don't have engorged breasts. But the downside to that is more time away from Oliver... but I need my time, too! Sometimes I work extra long between Mon and Thurs so I can get off work early on Friday- John and I have been able to have a few dates that way :) I went to see Swan Lake with my BFF last week. And in December, John and I will see The Nutcracker.
It's hard to really get out when we have no babysitter. My friends have offered, I just feel weird. Not that I dont' trust them- I just feel bad we'd inconvenience them. I need to get over that!
In summary- I love my baby and I love my husband. I love my family. I am very very happy.
A HEALTH SCARE
--
In October I had my yearly upper endoscopy. It was thought that I (came down with is the wrong word but you get the sentiment) with Barrett's Esophagus. There were changes in the lining of my esophagus that looked like it, but the path report came back saying that there was no "intestinal metaplasia". I spoke with one of the docs I work for (he is an esophagus expert) and he said that while some BE cases can have no dysplasia, if the path report said no intestinal metaplasia, then there is no BE. I want to talk to my doctor though because he saw what looked like it so I Want to know what that means for me. I was also told to be weary of my acid reflux medicine because it could cause my GISTS to enlarge. SO I REALLY NEED TO SEE HIM BUT HIS ADMIN SUCKS. Next week will be my quest to get an appointment. He really believes a total gastrectomy will save my esopahgus from future damage , future cancers. Otherwise, I'm healthy. I need to get tested for b12 and iron levels because on top of being exhausted from parenting, I'm just really energy drained. I think a shot and infusion of energy would help a lot! It's hard to get thorugh my PCP too because pills are generally the answer for most poeple- just not for me. And if she DID order the infusion of iron like I asked for a while ago, nobody told me the order was ready. UGH. So I'm a continual health crisis haha.
A POSSIBLE NF BABY
--
Finally-- in late September, Oliver joined me to see my NF doctor. He checked out Oliver under a black light and lo and behold- cafe au lait spots. 2 on his belly, 2 on each arm and 2 on one leg. Tehre is a chance some of those are scars from eczema- only time will tell. But he has many features that indicate he may have it: short stature, a big head, and spots. IF he does he does, but I hope he doesn't. He will be seen again in March to see if spots are still there. I will try to get a pic of the spots showed under black light!
Well, it's almost 1 am and I should go to bed. Long day tomorrow. I just thought I'd update. Sorry this is poorly written, but I just needed to get it out.
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