What a week, man.
Okay, well I am scheduled to start an infusion medication for the Crohn's disease next week; it's called Entyvio. I don't know much about it, other than it won't flare my MS unlike other Crohn's meds like Remicade.
Am I shocked I have Crohn's? Not one bit. But I don't really have Crohn's symptoms, so I have to take their word that the inflammation is consistent. I am hoping that the med will reduce things enough, but I am feeling like the surgeon on Wednesday is going to tell me I need to go under the knife and have a resection. I might need to have surgery in any case just to fix the bladder fistula, which I would probably welcome at this point, with the only exception to that feeling being that I am trying to get started at a new job here very soon and am anxious about the time frame for recovery. On the plus side, this particular location is notorious for taking a long time to "get in the system" (goodness knows it has already taken me a month to finalize everything, though I am expecting my offer this wee), so I am praying that it will take just a little bit longer and work in everyone's favor!!
I also had a meeting with my neurologist this week. I mentioned my struggles with spasticity, which have been particularly bad this last year (remember the foot attack at the Safeway incident?) So, she put me on Gabapentin. I'm slowly tapering that up, but probably won't take a huge amount as I am not really in need of that much of a change to be honest. Though I have not had the "eek I am about to have a spasm" feeling for the last few days since taking it, which is great, because I had three incidents of it in one night less than a week ago!
My neurologist was none too pleased that I was unmedicated for so long. I know that I made that decision for two reasons - 1, I couldn't afford the Gilenya with my Kaiser insurance for some reason, and 2, Steve and I were thinking that we might have a baby again this year. So being unmedicated made sense, as long as nothing bad happened between now and August. Well, that clearly did not happen! So she talked me into getting started with the Copaxone generic, called Glatopa, which is a daily injectable.
OY. I did it tonight, and man, this one hurt. I remember doing the subcutaneous injections with the Acthar years ago, but don't remember anything hurting this bad. I do recall one side of my abdomen hurting more than the other, and I feel like the left side was the better side, but I could be wrong and will need to go back and look. But it's been two hours since my injection and the site is still pretty painful. I am glad I did not get the heart-shattering, painful, "sense of impending doom" that some people get with this, haha, but pain is still no fun.
I will continue to update, and might give a video about doing the injectables one of these days. The best highlight of my weekend was a new baby - - I brought home a 2 month old ball python. I love her so much! Her name is Kaa. I haven't had a snake in years, and I just adore them. 2 year old daughter had a healthy sense of hesitation regarding the snake, but warmed up when we were putting her away - let's hope they grow together to love one another :)
Love to all,
MSloan
Sunday, March 4, 2018
Thursday, February 22, 2018
Where the Boat is Floating Now
Ok, I have taken a Norco, I'm real calm.
You know, this medication definitely has a euphoric effect to it after the pain killing kicks in. I haven't taken one in about a week, as I'm trying to make sure I don't end up with a much bigger problem of addiction at the end of all this. But it definitely enhances the usual happiness I feel at the end of the day when I spend time at home with my daughter, my kitties, and my husband. It's like putting a magnifying glass on my usual "happy" level and turning it up. My daughter always makes me smile and laugh, but when I'm "under the influence," I almost want to break down in tears. I want to share it with everyone. I make a lot of Facebook posts when I'm on the Norco.
The best one tonight? I took a bite of my Chocolate Fudge Brownie ice cream and nearly fell over with delight. I haven't eaten that kind of ice cream in a long time. Now, I probably would have super enjoyed it anyway because of what my diet has been forced to do lately, but I know that the extra "kick" I felt was due to the Norco.
I had 2 days of colon prep before my colonoscopy a week ago. This time, the cleanse was successful - probably in no small part from the huge amount of laxatives I took three days before, the start of the prep two days before with the liquid diet, and my diligence to just choke down the rest of that drink. I went in to the appointment totally prepared and calm. I was even joking with the nurse who helped me out - it's amazing how different the experience is when you know that to expect, and that you're actually ready!
My gastroenterologist came to see me before they totally drugged me out, and she let me know that my MRI results showed a "long fistulous track." When I think back to my lower-right quadrant abdominal pain that plagued me in late 2014 (see November 2014 posting for details), I now know that it had to be the beginning of this. I have since read my abdominal MRI report and, while not as easy to understand as the brain MRIs now that I am familiar with the terminology, it seems evident that the end of my small intestines has a hole that leads into a pocket of fluid, and down into the dome of my bladder. The entire top of my bladder is inflamed. There is just NO WAY this all started from this past December when I had some abdominal pain for a week - while that might have been the tail end, I can't think that the great pain I had November 2014 is a coincidence. They never found anything, and I think the ultrasound tech was really concerned during that test because she saw something she couldn't understand.
I'm not stupid. I'm a doctor! HIDE YOUR CONFUSED FACE BETTER, PEOPLE!
Otherwise, I am living with things ok. The biggest trouble is what happens after the colon cleanses - I have to be on a liquid diet for a few days, which makes my bladder feel back to normal! Unfortunately as soon as I introduce solid food again, all my bladder symptoms start back up. It really hurts to urinate again; not at the start of the stream, but at the end, like the contraction is painful against all the inflammation. Debris in the urine, and cloudiness, like before my colonoscopy failure a few weeks ago. Today I had sharp and dull pain along the area where I know the fistula is now (coincidence that its the same spot as a few years ago? I think not!) I'm virtually incontinent when I feel an urge to go - when I actually make it to the restroom, my body just stops wanting to hold it, so I have to get my pants off NOW NOW NOW! So embarrassing. Thank God for pads!
So, on to another day! Love to all,
MSloan
You know, this medication definitely has a euphoric effect to it after the pain killing kicks in. I haven't taken one in about a week, as I'm trying to make sure I don't end up with a much bigger problem of addiction at the end of all this. But it definitely enhances the usual happiness I feel at the end of the day when I spend time at home with my daughter, my kitties, and my husband. It's like putting a magnifying glass on my usual "happy" level and turning it up. My daughter always makes me smile and laugh, but when I'm "under the influence," I almost want to break down in tears. I want to share it with everyone. I make a lot of Facebook posts when I'm on the Norco.
The best one tonight? I took a bite of my Chocolate Fudge Brownie ice cream and nearly fell over with delight. I haven't eaten that kind of ice cream in a long time. Now, I probably would have super enjoyed it anyway because of what my diet has been forced to do lately, but I know that the extra "kick" I felt was due to the Norco.
I had 2 days of colon prep before my colonoscopy a week ago. This time, the cleanse was successful - probably in no small part from the huge amount of laxatives I took three days before, the start of the prep two days before with the liquid diet, and my diligence to just choke down the rest of that drink. I went in to the appointment totally prepared and calm. I was even joking with the nurse who helped me out - it's amazing how different the experience is when you know that to expect, and that you're actually ready!
My gastroenterologist came to see me before they totally drugged me out, and she let me know that my MRI results showed a "long fistulous track." When I think back to my lower-right quadrant abdominal pain that plagued me in late 2014 (see November 2014 posting for details), I now know that it had to be the beginning of this. I have since read my abdominal MRI report and, while not as easy to understand as the brain MRIs now that I am familiar with the terminology, it seems evident that the end of my small intestines has a hole that leads into a pocket of fluid, and down into the dome of my bladder. The entire top of my bladder is inflamed. There is just NO WAY this all started from this past December when I had some abdominal pain for a week - while that might have been the tail end, I can't think that the great pain I had November 2014 is a coincidence. They never found anything, and I think the ultrasound tech was really concerned during that test because she saw something she couldn't understand.
I'm not stupid. I'm a doctor! HIDE YOUR CONFUSED FACE BETTER, PEOPLE!
Otherwise, I am living with things ok. The biggest trouble is what happens after the colon cleanses - I have to be on a liquid diet for a few days, which makes my bladder feel back to normal! Unfortunately as soon as I introduce solid food again, all my bladder symptoms start back up. It really hurts to urinate again; not at the start of the stream, but at the end, like the contraction is painful against all the inflammation. Debris in the urine, and cloudiness, like before my colonoscopy failure a few weeks ago. Today I had sharp and dull pain along the area where I know the fistula is now (coincidence that its the same spot as a few years ago? I think not!) I'm virtually incontinent when I feel an urge to go - when I actually make it to the restroom, my body just stops wanting to hold it, so I have to get my pants off NOW NOW NOW! So embarrassing. Thank God for pads!
So, on to another day! Love to all,
MSloan
Wednesday, February 7, 2018
WTF?!
It didn't work.
This post may be TMI. But if you have ever had a colonoscopy, you will understand.
The bloody stuff didn't work.
The stupid, nauseating, saccharine, thick, disgusting stuff that I drank A GALLON OF didn't work! I went to my colonoscopy and wasn't cleared out! I stayed up all night, got 30 minutes grand total of sleep, and woke up panicked and super anxious. I was terrified they would turn me away and say they couldn't do the procedure today. Somehow I knew.
I got to the hospital alone. My husband dropped me off but had to take our kid to day care. So I walked in, by myself, and rushed up the stairs because he doesn't understand the meaning of "haste" when I told him I wanted to leave the house by 6:40 - not just barely leave by 6:50 and get there right at 7 AM. I wanted to be there early so I could breathe. NOPE. Instead they kept commenting that my blood pressure was high. No shit! I was having a panic attack that everything I had just done for the last three days was worth nothing - the reduction in food, the liquid diet for 24 hours, and the dreaded "colon prep."
What a bloody nightmare.
The upper endoscopy was very uncomfortable, even painful. I do remember it, though it isn't super vivid, thank goodness. I didn't feel like I was choking, just that I had some painful thing stuck down my throat. I even remember the little bit of colonoscopy that they did complete before they told me that my bowel was unclean and they had to abort - that did hurt. But I basically passed out right after that.
I woke up with my doctor telling me they needed to reschedule the colonoscopy. I am only grateful that I was able to get the upper endoscopy done today so it was not a complete waste of my time, energy, or money, as you forfeit the copay when they have to abort the procedure, because you're paying for all the prep and sedation. Nightmarish. And I have a meeting, a very important one, in two days. I am terrified that this will get in the way of all my new plans. I cannot have these issues right now! I am not even 30 years old, for crying out loud!
Now, next week, right after Valentine's day (and highly unlikely that my husband will get laid), I have to start TWO days of completely clear liquid diet and drink TWO gallons of the nauseating stuff. It is by far the worst part. That stuff.... let me tell you, I am a very picky eater, so being forced to down something that disgusting is pretty much my WORST nightmare. I would do anything for a pill instead, or a hundred pills. I would even drink 20 ounces of water every half hour if I had to, but not this stuff. I am just psyching myself out now that it won't work again, too.
What in the world is wrong with my body that I can take FIVE laxative tablets and drink an entire gallon of colon cleansing electrolytes and end up with basically nothing to show for it? Here I am, 24 hours after I began taking that stuff (which is supposed to start working within the hour, and totally clear your bowel out by hour 6) and I am still passing....well, it isn't clear, let's just say that.
I feel so tired. So sick of being sick. The fistula between my bowel and bladder is now leaking the disgusting fluid from the loose stools induced by that stuff. But I am so panicked that next week I will have the same problem that I'm tempted to go on liquid diet until then. Right now I'm going to pretend I'm eating like I just had my wisdom teeth out. I won't be taking any of the vicodin, because that can cause constipation, and I wonder how much of that is my issue now. The sluggish movement of my bowel might very well be part of this problem - and it may not be Crohn's at all.
She did get that endoscopy done, and took biopsies of my stomach and small intestine. Miraculously, my small intestine looked normal. My stomach was "inflamed." I don't know what any of that means and can't find much, other than it might possibly be H. Pylori (the ulcer bacteria).
Pray for me. Pray for my bowels. And pray that between now and next week that my insides move fast enough that I can get this damn test done and move on with my life!
MSloan
This post may be TMI. But if you have ever had a colonoscopy, you will understand.
The bloody stuff didn't work.
The stupid, nauseating, saccharine, thick, disgusting stuff that I drank A GALLON OF didn't work! I went to my colonoscopy and wasn't cleared out! I stayed up all night, got 30 minutes grand total of sleep, and woke up panicked and super anxious. I was terrified they would turn me away and say they couldn't do the procedure today. Somehow I knew.
I got to the hospital alone. My husband dropped me off but had to take our kid to day care. So I walked in, by myself, and rushed up the stairs because he doesn't understand the meaning of "haste" when I told him I wanted to leave the house by 6:40 - not just barely leave by 6:50 and get there right at 7 AM. I wanted to be there early so I could breathe. NOPE. Instead they kept commenting that my blood pressure was high. No shit! I was having a panic attack that everything I had just done for the last three days was worth nothing - the reduction in food, the liquid diet for 24 hours, and the dreaded "colon prep."
What a bloody nightmare.
The upper endoscopy was very uncomfortable, even painful. I do remember it, though it isn't super vivid, thank goodness. I didn't feel like I was choking, just that I had some painful thing stuck down my throat. I even remember the little bit of colonoscopy that they did complete before they told me that my bowel was unclean and they had to abort - that did hurt. But I basically passed out right after that.
I woke up with my doctor telling me they needed to reschedule the colonoscopy. I am only grateful that I was able to get the upper endoscopy done today so it was not a complete waste of my time, energy, or money, as you forfeit the copay when they have to abort the procedure, because you're paying for all the prep and sedation. Nightmarish. And I have a meeting, a very important one, in two days. I am terrified that this will get in the way of all my new plans. I cannot have these issues right now! I am not even 30 years old, for crying out loud!
Now, next week, right after Valentine's day (and highly unlikely that my husband will get laid), I have to start TWO days of completely clear liquid diet and drink TWO gallons of the nauseating stuff. It is by far the worst part. That stuff.... let me tell you, I am a very picky eater, so being forced to down something that disgusting is pretty much my WORST nightmare. I would do anything for a pill instead, or a hundred pills. I would even drink 20 ounces of water every half hour if I had to, but not this stuff. I am just psyching myself out now that it won't work again, too.
What in the world is wrong with my body that I can take FIVE laxative tablets and drink an entire gallon of colon cleansing electrolytes and end up with basically nothing to show for it? Here I am, 24 hours after I began taking that stuff (which is supposed to start working within the hour, and totally clear your bowel out by hour 6) and I am still passing....well, it isn't clear, let's just say that.
I feel so tired. So sick of being sick. The fistula between my bowel and bladder is now leaking the disgusting fluid from the loose stools induced by that stuff. But I am so panicked that next week I will have the same problem that I'm tempted to go on liquid diet until then. Right now I'm going to pretend I'm eating like I just had my wisdom teeth out. I won't be taking any of the vicodin, because that can cause constipation, and I wonder how much of that is my issue now. The sluggish movement of my bowel might very well be part of this problem - and it may not be Crohn's at all.
She did get that endoscopy done, and took biopsies of my stomach and small intestine. Miraculously, my small intestine looked normal. My stomach was "inflamed." I don't know what any of that means and can't find much, other than it might possibly be H. Pylori (the ulcer bacteria).
Pray for me. Pray for my bowels. And pray that between now and next week that my insides move fast enough that I can get this damn test done and move on with my life!
MSloan
Tuesday, January 30, 2018
Uncertainty
Well, not much to report. No change.
I am fairly certain that I have an enterovesical fistula - which means there is a passageway between my bowel and my bladder. This could explain all the weird urinary symptoms, with the absence of actual UTI. I think it's a little bit odd that they did not find air during CT (which is the telltale sign of EVF) - but all my other symptoms seem to fit.
I'm doing an at-home experiment as a result, called the poppyseed test. It's exactly what you think. I eat a shit ton of poppyseeds (luckily I have a total addiction to almond poppyseed muffins) and watch to see if I pass any poppyseeds from my urethra over the next couple of days.
I am fortunate that actually passing small things from my urethra no longer causes me unbelievable pain - it's now only slightly uncomfortable for the most part. I do occasionally have more pain, but it's few and far between. Wish I could say that things were healing, but my urine keeps changing and getting darker. I'm peeing blood again. So today it's not really getting better, but how I feel is getting more tolerable.
Wish I could report that my MS was totally chill right now - I'm hating the fact that my leg spasticity seems to be on the rise. Every morning when I stretch my right leg, it cramps up. It's likely just a side effect of everything from the steroids (which keep me awake, give me heartburn, make my voice scratchy, yadda yadda). Prednisone is seriously no fun. Can't wait to be finally tapered off - only about seven more days!!
My life feels like I am at another set of crossroads. It hasn't even been a year since I totally bailed from my first real job. I loved that job, but there were so many things wrong with that location. I just could not stay there any more, waiting for the ship to sink. I felt guilty and terrible. But it wasn't right.
Well, I feel like this just isn't right. It can't be right. I don't belong here!
There's gotta be something better than this
There's gotta be something better to do
And when I find me something better to do..
I'm gonna get up, I'm gonna get out, I'm gonna get up, get out, and do it!!
Love, MSloan
I am fairly certain that I have an enterovesical fistula - which means there is a passageway between my bowel and my bladder. This could explain all the weird urinary symptoms, with the absence of actual UTI. I think it's a little bit odd that they did not find air during CT (which is the telltale sign of EVF) - but all my other symptoms seem to fit.
I'm doing an at-home experiment as a result, called the poppyseed test. It's exactly what you think. I eat a shit ton of poppyseeds (luckily I have a total addiction to almond poppyseed muffins) and watch to see if I pass any poppyseeds from my urethra over the next couple of days.
I am fortunate that actually passing small things from my urethra no longer causes me unbelievable pain - it's now only slightly uncomfortable for the most part. I do occasionally have more pain, but it's few and far between. Wish I could say that things were healing, but my urine keeps changing and getting darker. I'm peeing blood again. So today it's not really getting better, but how I feel is getting more tolerable.
Wish I could report that my MS was totally chill right now - I'm hating the fact that my leg spasticity seems to be on the rise. Every morning when I stretch my right leg, it cramps up. It's likely just a side effect of everything from the steroids (which keep me awake, give me heartburn, make my voice scratchy, yadda yadda). Prednisone is seriously no fun. Can't wait to be finally tapered off - only about seven more days!!
My life feels like I am at another set of crossroads. It hasn't even been a year since I totally bailed from my first real job. I loved that job, but there were so many things wrong with that location. I just could not stay there any more, waiting for the ship to sink. I felt guilty and terrible. But it wasn't right.
Well, I feel like this just isn't right. It can't be right. I don't belong here!
There's gotta be something better than this
There's gotta be something better to do
And when I find me something better to do..
I'm gonna get up, I'm gonna get out, I'm gonna get up, get out, and do it!!
Love, MSloan
Tuesday, January 23, 2018
An Unhealthy Coping Strategy
Hi, my name is MSloan, and I am a shopaholic.
I started my addiction to shopping in 2009 shortly after I got married and fell into a deep depression. I felt completely alone in my life, despite marrying a wonderful man, and I felt like I had no real direction. I was applying to graduate school in the only thing I had ever really studied, and I really had issues with feeling satisfied with myself - how I looked, how I felt, how I dressed, and how I coped.
I started to get "sick" around this time - the infamous part of my life that I describe as such. I know now that it was the beginning of my MS. But then - I was just getting sick. Sick in an indescribable way. Sick in a way that made me dizzy and nauseated, in a way that made me hate who I was.
So what did I do? I went shopping.
I shopped and I shopped. I went to the JcPenney no less than three times per week. I was constantly crawling the mall, looking for sizes that fit. I bought lots of clothes of the same style in different colors. Some of these clothes I still have - but when you buy a lot of clothes at once, it's highly unlikely that you're purchasing quality stuff. The clothing I bought was much more professional than my every day life called for - I ended up standing out looking too old for my age, or above my "station." But I didn't care - I craved respect, because I couldn't give it to myself. I also had concerns about whether or not my clothes were modest enough - a change that I was making at this same time, adding more stress to the situation.
I didn't go into tremendous debt for my shopping, but I knew I had a problem. If I wasn't at home or at work, I was shopping. I walked into the Dress Barn on the corner of the Target lot probably as often as I went to the Target (which was often). I knew every inch of the store. I was at these stores so much, there was no point in shopping - I knew all the inventory. I shopped online. I learned that inventory. I memorized where clothes were on each page, which color I could buy it in, what size. I learned the names of styles and fabrics. I bought shoes. I bought jewelry. I kept shopping.
Since that time, I have learned that I can still slip into shopping addiction really quickly, especially when I am feeling low. This year, I have found myself falling back into that cycle. I thought I was feeling well enough about my circumstance, but clearly that's not true. I have bought literally thousands of dollars of clothes. While I am still not going into debt for my addiction, it is taking a toll on my savings, and what I had hoped to save up for. I bought $200 of clothing yesterday. I shouldn't be spending money at all - I have to pay for a colonoscopy, likely before the month is out.
What is wrong with me??
MSloan
I started my addiction to shopping in 2009 shortly after I got married and fell into a deep depression. I felt completely alone in my life, despite marrying a wonderful man, and I felt like I had no real direction. I was applying to graduate school in the only thing I had ever really studied, and I really had issues with feeling satisfied with myself - how I looked, how I felt, how I dressed, and how I coped.
I started to get "sick" around this time - the infamous part of my life that I describe as such. I know now that it was the beginning of my MS. But then - I was just getting sick. Sick in an indescribable way. Sick in a way that made me dizzy and nauseated, in a way that made me hate who I was.
So what did I do? I went shopping.
I shopped and I shopped. I went to the JcPenney no less than three times per week. I was constantly crawling the mall, looking for sizes that fit. I bought lots of clothes of the same style in different colors. Some of these clothes I still have - but when you buy a lot of clothes at once, it's highly unlikely that you're purchasing quality stuff. The clothing I bought was much more professional than my every day life called for - I ended up standing out looking too old for my age, or above my "station." But I didn't care - I craved respect, because I couldn't give it to myself. I also had concerns about whether or not my clothes were modest enough - a change that I was making at this same time, adding more stress to the situation.
I didn't go into tremendous debt for my shopping, but I knew I had a problem. If I wasn't at home or at work, I was shopping. I walked into the Dress Barn on the corner of the Target lot probably as often as I went to the Target (which was often). I knew every inch of the store. I was at these stores so much, there was no point in shopping - I knew all the inventory. I shopped online. I learned that inventory. I memorized where clothes were on each page, which color I could buy it in, what size. I learned the names of styles and fabrics. I bought shoes. I bought jewelry. I kept shopping.
Since that time, I have learned that I can still slip into shopping addiction really quickly, especially when I am feeling low. This year, I have found myself falling back into that cycle. I thought I was feeling well enough about my circumstance, but clearly that's not true. I have bought literally thousands of dollars of clothes. While I am still not going into debt for my addiction, it is taking a toll on my savings, and what I had hoped to save up for. I bought $200 of clothing yesterday. I shouldn't be spending money at all - I have to pay for a colonoscopy, likely before the month is out.
What is wrong with me??
MSloan
Monday, January 22, 2018
Another Question
Bladder cytology is negative for cancer cells - which is such a relief. I do not know if I could survive a disease that would require so much goings-on with my urethra.
On to gastroenterology. Let's hope they only find Crohn's and not malignancy there.
Pain pretty bad tonight - whatever it is, pray they figure it out soon.
MSloan
On to gastroenterology. Let's hope they only find Crohn's and not malignancy there.
Pain pretty bad tonight - whatever it is, pray they figure it out soon.
MSloan
Saturday, January 20, 2018
So Many Thoughts
Oy.
I really despise being sick. I feel like I've been sick my whole life.
I miss my mother, even though right now she would probably be the absolute worst person to have around in this time. She would likely make me feel ten times worse instead of better. Nonetheless, I miss her, and wish I had her to call and talk to.
I miss feeling like I had a best friend I could just call and cry to. I'm scared. I don't know why my body keeps doing these things, without warning, totally impacting everything I do on a daily basis.
My job is not working out. I love what I do, and I wouldn't change my career for the world, but this particular place is just not a good fit for me. I don't know if I should try to stick it out longer before leaving, or if I should just cut my losses now. I know they depend on me for these new locations, but there is so little business coming in besides what I brought with me from my last office. How depressing is that?
My husband is tired of me being sick just as much as I am. I haven't been able to have sex in two months. That's an even longer break than usual, simply because I haven't been feeling well, and now I am understandably anxious about having anything happen in the region where I'm bleeding and have pain up my urethra. I mean, if sex makes one vulnerable to UTIs anyway, this condition is making that possibility even more likely since I'm on the steroids. He's losing patience with me, I can feel it, even though he says he's not. It makes me worried that the support line I have at home is running out.
I wish I could feel the steroids doing something. Since yesterday's cystoscopy, my bladder hurts worse and my urine is yet again changing more colors. I'm confident that I'm not imminently going to die or something, but it's very nervewracking to look behind you after going to the bathroom and seeing a very unnatural sight. It makes me want to crawl in a corner, sleep all day. But I have a kid and I can't do that. I wish my sister or family was here so they could help with the kid and I could get some rest.
I am grateful for my daughter, who snuggles with me in the morning, who wiggles her little bum when watching TV, and gets excited for little things like eating oatmeal. She is truly the biggest delight in my life. I get tired of having to constantly be moving around her, but I wouldn't change her for the world. For this I have to keep my head up and remind myself every second why it doesn't matter what I'm feeling - if I allow her to grow up well, it won't matter how I'm feeling now.
That's what I'm telling myself.
MSloan
I really despise being sick. I feel like I've been sick my whole life.
I miss my mother, even though right now she would probably be the absolute worst person to have around in this time. She would likely make me feel ten times worse instead of better. Nonetheless, I miss her, and wish I had her to call and talk to.
I miss feeling like I had a best friend I could just call and cry to. I'm scared. I don't know why my body keeps doing these things, without warning, totally impacting everything I do on a daily basis.
My job is not working out. I love what I do, and I wouldn't change my career for the world, but this particular place is just not a good fit for me. I don't know if I should try to stick it out longer before leaving, or if I should just cut my losses now. I know they depend on me for these new locations, but there is so little business coming in besides what I brought with me from my last office. How depressing is that?
My husband is tired of me being sick just as much as I am. I haven't been able to have sex in two months. That's an even longer break than usual, simply because I haven't been feeling well, and now I am understandably anxious about having anything happen in the region where I'm bleeding and have pain up my urethra. I mean, if sex makes one vulnerable to UTIs anyway, this condition is making that possibility even more likely since I'm on the steroids. He's losing patience with me, I can feel it, even though he says he's not. It makes me worried that the support line I have at home is running out.
I wish I could feel the steroids doing something. Since yesterday's cystoscopy, my bladder hurts worse and my urine is yet again changing more colors. I'm confident that I'm not imminently going to die or something, but it's very nervewracking to look behind you after going to the bathroom and seeing a very unnatural sight. It makes me want to crawl in a corner, sleep all day. But I have a kid and I can't do that. I wish my sister or family was here so they could help with the kid and I could get some rest.
I am grateful for my daughter, who snuggles with me in the morning, who wiggles her little bum when watching TV, and gets excited for little things like eating oatmeal. She is truly the biggest delight in my life. I get tired of having to constantly be moving around her, but I wouldn't change her for the world. For this I have to keep my head up and remind myself every second why it doesn't matter what I'm feeling - if I allow her to grow up well, it won't matter how I'm feeling now.
That's what I'm telling myself.
MSloan
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