Good evening,
Well, the last 24 hours have been a trip. It all started when I was changing the layout of this blog last night, then intensified when I was finishing up the "Tuesdays with Morrie" post. I was really nauseated, and although I was tired, I couldn't sleep. Usually, I can get myself to sleep by 2am at the very, very latest with the help of amitryptaline and tizanadine, which help my fibromyalgia, but I felt so sick that I just couldn't fall asleep. I got up a couple of times to walk around, use the bathroom, eat crackers and give the also restless cats a 2am snack, but nothing helped. I sat up, read, lay down, sat up...lather, rinse, repeat. At 3:45am, my husband woke up to find me curled up in a ball. Since he gets up by 4am at the latest, he got up and got ready for work, then left about 4:15am (He works 10 hour shifts and drives 3 hours round trip, so he prefers to get an early start). I drank a little water and felt a little better, so I got up and did a 45 minute yoga workout and then did some of my physical therapy exercises. I took it easy since I hadn't slept and my balance was definitely a bit off.
So, by 5:30 am, I moved myself up to the couch with pillows from the bed and a down comforter, closed all the curtains so the sun wouldn't bother me and tried to fall asleep again...to no avail. The nausea acted up again and my guts were churning. It was becoming pretty obvious to me that I was once again having an allergic/adverse reaction to a prescription drug. I made myself some peppermint tea, and while the smell helped, I just couldn't put down any fluids. So, I called the Urogynecology office at 8:30 and tried to wait patiently for a call back from a triage nurse. Two hours later, I was out of patience, so I called back and spoke directly to a nurse in the clinic, who took my info to the doctor. She called me back at 11:30 to let me know that (long story short) between my info and their research, we're just not quite sure if the suspect medication, Lysteda was the cause of the reaction. My symptoms are extremely rare, but I'm also that person that has extremely rare reactions to certain drugs. The final solution was that they called in an anti-nausea pill.
Now, the problem was how to get it. I hadn't slept all night, could hardly move, knew I couldn't drive without throwing up. As mentioned, my hubby is an hour and a half away at this point. Fortunately, a good friend of mine lives close to both me and my pharmacy and was able to pick up my prescription and drop it off at my house. She is my hero!!!!! Huge, huge thank you!!!!!! By total chance, it fit perfectly into her day since she had some errands to run and had to take her adorable baby girl to an appointment.
But back to the Lysteda. We're a little concerned because the drug is prescribed for my endometriosis to reduce the pain caused by bleeding adhesions that reside on pretty much every organ and wall in my abdominal cavity, and I only take it 5 days a month. This was my 3rd month on it. The first two went beautifully and did a great deal to reduce my pain levels. Therefore, the drug could have interacted with some other medication, either prescripton or over-the-counter. We agreed that I would try it once more next month (with the anti-nausea pills handy beforehand!) to figure out whether this is a reaction, or maybe just some weird fluke...which should surprise no one at this point. :)
Anyway, the hubby came home two hours early, which is when I finally managed to nap for a couple of hours. I still wasn't feeling great, but I could tell I was on the way to better. Having him there definitely helped because I'm always afraid to go to sleep when I don't have all the facts about what's going on with me. By about 8pm, I had managed to eat a small piece of homemade cheesy bread (I am from Wisconsin!) and was coming back to life. Since then, I've been pounding down water and drank a 2-serving bottle of Organic fruit juice. I'm sure my Interstitial Cystitis will act up a bit because of it, but I feel sooooooooo much better now that I'm rehydrated.
Right now, I'm waiting for the pills to knock me out. One would think that 2 hours of sleep in the last 39 hours would allow me to fall asleep with no problem, but that is somehow not the case. All of this said, I'm pretty darn happy that this is the only day I've lost out on in recent history because I wasn't feeling well. However, the pills are kicking in and therefore; I leave you all before I start typing crazy nonsense...which I'm sure you'd enjoy.
Maybe next time.
Nighty-night!
-S
Tuesday, August 30, 2011
Monday, August 29, 2011
My long overdue "Tuesdays with Morrie" post
Greetings again,
Now that I'm feeling a lot better, I'm able to get around to the posts that I've been meaning to share for a long time, but never did. This one is about how the book, "Tuesdays with Morrie" by Mitch Albom got me through the worst of times. My husband received the book as a gift from his Mom years ago and I never allowed myself to read it because I knew it had a sad ending and I already had too many sad things happening in my life. Once I finally read it, I dog-eared the heck out of it and now I keep it on my nightstand next to a small book of Bible passages for those moments when I need inspiration and strength the most. For those who never read the book, it is a true story about Mitch Albom's visits with his dying college professor who served as a mentor to him back in college, and then again as he was dying to share lessons on life itself. I humbly admit that I can't adequately summarize the power of the messages within the book, but I want to share some of the quotes that pulled me through the days when I was absolutely paralyzed with pain. And dear lord, I hope I'm not breaking some kind of copyright law by sharing my thoughts on this little blog of mine...
"I give myself a good cry if I need it. But then I concentrate on all of the good things in life"
"Everyone knows they're going to die...but no one believes it. If we did, we would do things differently"
On aging: "You have to find what's good and true and beautiful in your life as it is now. Looking back makes you competitive. And, age is not a competitive issue". (This one really helped me to accept that I can't go back to the time when I was 24, newly married and completely healthy, and I was finally able to find the joy in my life during the worst of the pain)
On living a meaningful life: "Devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning." He later notes that money is not a part of a meaningful life.
If you don't own this book: Buy it. Read it. Live it.
We'll all be better for it.
-S
Now that I'm feeling a lot better, I'm able to get around to the posts that I've been meaning to share for a long time, but never did. This one is about how the book, "Tuesdays with Morrie" by Mitch Albom got me through the worst of times. My husband received the book as a gift from his Mom years ago and I never allowed myself to read it because I knew it had a sad ending and I already had too many sad things happening in my life. Once I finally read it, I dog-eared the heck out of it and now I keep it on my nightstand next to a small book of Bible passages for those moments when I need inspiration and strength the most. For those who never read the book, it is a true story about Mitch Albom's visits with his dying college professor who served as a mentor to him back in college, and then again as he was dying to share lessons on life itself. I humbly admit that I can't adequately summarize the power of the messages within the book, but I want to share some of the quotes that pulled me through the days when I was absolutely paralyzed with pain. And dear lord, I hope I'm not breaking some kind of copyright law by sharing my thoughts on this little blog of mine...
"I give myself a good cry if I need it. But then I concentrate on all of the good things in life"
"Everyone knows they're going to die...but no one believes it. If we did, we would do things differently"
On aging: "You have to find what's good and true and beautiful in your life as it is now. Looking back makes you competitive. And, age is not a competitive issue". (This one really helped me to accept that I can't go back to the time when I was 24, newly married and completely healthy, and I was finally able to find the joy in my life during the worst of the pain)
On living a meaningful life: "Devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning." He later notes that money is not a part of a meaningful life.
If you don't own this book: Buy it. Read it. Live it.
We'll all be better for it.
-S
Sunday, August 28, 2011
An OK weekend
Hello again!
Another weekend is winding down. This one was far less eventful than planned. My husband is getting better, but still sick. Unfortunately, I brought myself down a little bit. As I've mentioned, my success in turning my health around recently has largely been due to the fact that I've been sticking to a very strict, low-acid diet. Well, on Friday (my birthday), I didn't want my husband to cook, so I decided that I'd order pizza. Note that I can't have tomatoes AND I'm lactose intolerant. Also, I can't have onions, but decided to treat myself anyway. At least I skipped pepperoni (not allowed to have processed meat). I figured that the Elmiron (the long term med that coats my bladder to prevent new adhesions) was probably working pretty well, and that if I took a dairy digestive supplement, and this other over the counter aid called Pre-lief, which takes acid out of food, I'd be fine. Totally wrong. However, the punishment I received was pretty manageable and didn't take me back to square one. Whew. Sadly, I'm admitting to myself that pizza is something I probably won't be able to enjoy in the future. So...I had one (ok, two) last pieces today at my Nephew's birthday party. I have PT tomorrow and will have to admit to my physical therapist what I did to myself, but hey...we're all human.
In other news, my official job search starts tomorrow. My wish list is pretty demanding. Part time, semi-flexible hours, pays fairly well, allows me to apply my experience and degree, ideally temporary. I'm trying to figure out how to write my cover letter to explain why I haven't worked for the last year and a half without giving away the fact that I have health issues, but I'm sure I'll work that out. Then on Friday, I get to meet my new Nephew, Harvey before attending my stepbrother's wedding on Saturday. It's going to be fun to finally get to take a weekend trip without having to worry about everything that I had to worry about during my travels just a few months ago. However, I do need to worry about the person who has been purposefully causing ruckus in my life, so I'm gearing myself up for that in hopes that I will handle the situation with grace (since the other person has not thus far and has stated they will not change), as well as not allowing it to cause another flare of my autoimmune disorders. After that, I have another wedding shower, my husband's company party, a belated birthday celebration, two class reunions (I attended two different high schools and am meeting up with some friends from the first one in a non-official event), my 9th wedding anniversary, and another wedding coming up in the next couple of months. That's just the special events in addition to the other plans on the calendar. So, I need this streak of feeling good to continue for awhile.
Woohoo!
-S
Another weekend is winding down. This one was far less eventful than planned. My husband is getting better, but still sick. Unfortunately, I brought myself down a little bit. As I've mentioned, my success in turning my health around recently has largely been due to the fact that I've been sticking to a very strict, low-acid diet. Well, on Friday (my birthday), I didn't want my husband to cook, so I decided that I'd order pizza. Note that I can't have tomatoes AND I'm lactose intolerant. Also, I can't have onions, but decided to treat myself anyway. At least I skipped pepperoni (not allowed to have processed meat). I figured that the Elmiron (the long term med that coats my bladder to prevent new adhesions) was probably working pretty well, and that if I took a dairy digestive supplement, and this other over the counter aid called Pre-lief, which takes acid out of food, I'd be fine. Totally wrong. However, the punishment I received was pretty manageable and didn't take me back to square one. Whew. Sadly, I'm admitting to myself that pizza is something I probably won't be able to enjoy in the future. So...I had one (ok, two) last pieces today at my Nephew's birthday party. I have PT tomorrow and will have to admit to my physical therapist what I did to myself, but hey...we're all human.
In other news, my official job search starts tomorrow. My wish list is pretty demanding. Part time, semi-flexible hours, pays fairly well, allows me to apply my experience and degree, ideally temporary. I'm trying to figure out how to write my cover letter to explain why I haven't worked for the last year and a half without giving away the fact that I have health issues, but I'm sure I'll work that out. Then on Friday, I get to meet my new Nephew, Harvey before attending my stepbrother's wedding on Saturday. It's going to be fun to finally get to take a weekend trip without having to worry about everything that I had to worry about during my travels just a few months ago. However, I do need to worry about the person who has been purposefully causing ruckus in my life, so I'm gearing myself up for that in hopes that I will handle the situation with grace (since the other person has not thus far and has stated they will not change), as well as not allowing it to cause another flare of my autoimmune disorders. After that, I have another wedding shower, my husband's company party, a belated birthday celebration, two class reunions (I attended two different high schools and am meeting up with some friends from the first one in a non-official event), my 9th wedding anniversary, and another wedding coming up in the next couple of months. That's just the special events in addition to the other plans on the calendar. So, I need this streak of feeling good to continue for awhile.
Woohoo!
-S
Friday, August 26, 2011
Just got older, but I feel much younger
Well, today is my birthday. I turned 33. While things didn't go exactly as planned (by far), I'm loving the outlook that I've chosen to have on life.
To start with, I feel absolutely great today! My pain is as close to 0 as it will probably ever get, so I feel absolutely blessed. Two years ago, I felt like I was 100 years old. Last year, I felt about 120 years old. Today, I feel like I could be 25. It's pretty amazing. Unfortunately, my poor husband is dowwn for the count with a terrible cold, causing us to postpone all celebration. Well, all except the two little cupcakes that I brought home from Starbucks when I went out to get my free birthday drink. Also, I am just in awe at the sheer number of well wishes that I received on Facebook today. I realize again how many people have supported me in various ways over the few years and I am beyond grateful. Even the smallest tokens of support really helped me to get through the worst of times.
Cheers!
Sarah
To start with, I feel absolutely great today! My pain is as close to 0 as it will probably ever get, so I feel absolutely blessed. Two years ago, I felt like I was 100 years old. Last year, I felt about 120 years old. Today, I feel like I could be 25. It's pretty amazing. Unfortunately, my poor husband is dowwn for the count with a terrible cold, causing us to postpone all celebration. Well, all except the two little cupcakes that I brought home from Starbucks when I went out to get my free birthday drink. Also, I am just in awe at the sheer number of well wishes that I received on Facebook today. I realize again how many people have supported me in various ways over the few years and I am beyond grateful. Even the smallest tokens of support really helped me to get through the worst of times.
Cheers!
Sarah
Thursday, August 25, 2011
A normal day
Greetings once again,
I am slowly learning to stop fretting about health stuff. I was able to get through my entire day yesterday without my health affecting me at all. First, I took a tour of a historical landmark in my town. Although I had to sit a few times throughout the tour, I felt great! Next, I had a massage, which really helped me with the neck pain that I've been dealing with lately. Unfortunately, there were two things that cannot be blamed on my health, but rather a result of rushing around to get places: I grabbed the checkbook that doesn't have money in the account to pay for the massage, and I left my necklace behind. Luckily, these were the worst things that happened to me that day. Having "normal" problems is kind of cool.
Later that day, I went to the girl's night dinner in which I had to call ahead and ask about the menu. The host/hostess were incredibly kind in making sure there were things for me to eat. However, I couldn't pass up the chocolate soy ice cream with toppings of oreo cookies and chocolate chips/sprinkles for dessert...and some dessert wine. I shouldn't have soy, oreos, or chocolate, but at least it wasn't dairy-based so I didn't have to worry about my lactose intolerance. :) Surprisingly, my medication for my Intersitial Cystitis (Elmiron) must be kicking in because I didn't have any of the bladder pain I expected from leaving my diet. Aside from that, I got to know some fantastic women a little better, and was able to share a bit more about myself. It was an all-around good time. To top it off, these women have only known me in a pretty heavily medicated state, and all commented that they can see just by looking at me that I'm feeling much better. I think best of all is that fact that they are a genuine group of women, free of petty drama that will help me to continue on my path to live in the positive, which should help to maintain my heatlh and overall outlook on life.
Also, I've found a couple of part time jobs that I'd like to apply for. I'm giving myself the weekend to decide if now is really the time to pull the trigger. My goal is to find something that will let me use a part of my degree that I haven't been able to use in my previous career, such as marketing. Also, the hours need to be flexible so that I can work around appointments and the inevitable days when I'm going to be stuck in bed. It will be nice to turn on that part of my brain again.
For today, my poor husband is home sick, so I'm doing my best to take care of him for a change. I owe him. :)
-S
I am slowly learning to stop fretting about health stuff. I was able to get through my entire day yesterday without my health affecting me at all. First, I took a tour of a historical landmark in my town. Although I had to sit a few times throughout the tour, I felt great! Next, I had a massage, which really helped me with the neck pain that I've been dealing with lately. Unfortunately, there were two things that cannot be blamed on my health, but rather a result of rushing around to get places: I grabbed the checkbook that doesn't have money in the account to pay for the massage, and I left my necklace behind. Luckily, these were the worst things that happened to me that day. Having "normal" problems is kind of cool.
Later that day, I went to the girl's night dinner in which I had to call ahead and ask about the menu. The host/hostess were incredibly kind in making sure there were things for me to eat. However, I couldn't pass up the chocolate soy ice cream with toppings of oreo cookies and chocolate chips/sprinkles for dessert...and some dessert wine. I shouldn't have soy, oreos, or chocolate, but at least it wasn't dairy-based so I didn't have to worry about my lactose intolerance. :) Surprisingly, my medication for my Intersitial Cystitis (Elmiron) must be kicking in because I didn't have any of the bladder pain I expected from leaving my diet. Aside from that, I got to know some fantastic women a little better, and was able to share a bit more about myself. It was an all-around good time. To top it off, these women have only known me in a pretty heavily medicated state, and all commented that they can see just by looking at me that I'm feeling much better. I think best of all is that fact that they are a genuine group of women, free of petty drama that will help me to continue on my path to live in the positive, which should help to maintain my heatlh and overall outlook on life.
Also, I've found a couple of part time jobs that I'd like to apply for. I'm giving myself the weekend to decide if now is really the time to pull the trigger. My goal is to find something that will let me use a part of my degree that I haven't been able to use in my previous career, such as marketing. Also, the hours need to be flexible so that I can work around appointments and the inevitable days when I'm going to be stuck in bed. It will be nice to turn on that part of my brain again.
For today, my poor husband is home sick, so I'm doing my best to take care of him for a change. I owe him. :)
-S
Wednesday, August 24, 2011
Passing for "normal"
Greetings for a third day in a row!
So, I'm at a point where I'm trying to pass for "normal" in society again. This morning, I met up with a group of mommies that I hang out with on Wednesdays and took a tour of a historic place of my town. I'm embarassed to say that I've lived here over 8 years and haven't seen it yet. Anyway, it's kind of funny that I hang out with the group since i don't have children. However, they don't seem to find it odd since they are aware of my health situation. But what was such a blessing to me was that I was able to wake up this morning and get ready to go without crazy pre-planning of having tons of meds with me, making sure that i feel well, having my husband there with an escape plan in case I don't feel well, etc, etc.
Tonight, I'm hanging out with that group again for a dinner cooked by one of the husbands. This situation is one in which it will be hard for me to seem "normal" since I'm on such a restricted diet that I can't eat much of anything right now. My diet calls for nothing acidic, so I have to pass on a few of the items, and had to make a special call to someone that I haven't seen in a couple of months to explain. I'm also the kind of person that hates to make people go out of the way for me, especially since I've become ill, so this call wasn't easy for me to make. But of course, my friend was super-amazing about it. I'm really looking forward to spending more time with these ladies.
Also, in one of my more "normal" blunders, I happened to have grabbed the wrong checkbook today and paid for a massage with an account that has no money in it. Luckily, I know the massage therapist well enough that I could call her and ask her to hold the check until tomorrow. But...I have to make my hubby go out of his way to put money in that account, since the bank doesn't have a branch anywhere near our house. Whoops! However...if that's the biggest issue in my day, I'm feelin' pretty good about it, though of course I feel bad that I'm putting the guy that takes care of me the most out of his way.
Finally, I'm starting to look for work again. Nothing full time yet, since I don't want to undo all of my hard work with too much stress too soon. Something part time, and ideally something with flexible hours. I have a feeling that it will take a bit of time to find something like that.
Onward and upward!
-S
So, I'm at a point where I'm trying to pass for "normal" in society again. This morning, I met up with a group of mommies that I hang out with on Wednesdays and took a tour of a historic place of my town. I'm embarassed to say that I've lived here over 8 years and haven't seen it yet. Anyway, it's kind of funny that I hang out with the group since i don't have children. However, they don't seem to find it odd since they are aware of my health situation. But what was such a blessing to me was that I was able to wake up this morning and get ready to go without crazy pre-planning of having tons of meds with me, making sure that i feel well, having my husband there with an escape plan in case I don't feel well, etc, etc.
Tonight, I'm hanging out with that group again for a dinner cooked by one of the husbands. This situation is one in which it will be hard for me to seem "normal" since I'm on such a restricted diet that I can't eat much of anything right now. My diet calls for nothing acidic, so I have to pass on a few of the items, and had to make a special call to someone that I haven't seen in a couple of months to explain. I'm also the kind of person that hates to make people go out of the way for me, especially since I've become ill, so this call wasn't easy for me to make. But of course, my friend was super-amazing about it. I'm really looking forward to spending more time with these ladies.
Also, in one of my more "normal" blunders, I happened to have grabbed the wrong checkbook today and paid for a massage with an account that has no money in it. Luckily, I know the massage therapist well enough that I could call her and ask her to hold the check until tomorrow. But...I have to make my hubby go out of his way to put money in that account, since the bank doesn't have a branch anywhere near our house. Whoops! However...if that's the biggest issue in my day, I'm feelin' pretty good about it, though of course I feel bad that I'm putting the guy that takes care of me the most out of his way.
Finally, I'm starting to look for work again. Nothing full time yet, since I don't want to undo all of my hard work with too much stress too soon. Something part time, and ideally something with flexible hours. I have a feeling that it will take a bit of time to find something like that.
Onward and upward!
-S
Tuesday, August 23, 2011
Random things...
I'm back. Two days in a row is pretty significant for me these days. My life is blissfully boring at the moment and I don't usually have much to talk about.
What triggered my need to blog for the day was I was just lamenting to my husband that I am so annoyed that I'm too darn tired to do much in a day. Not having all the pain is really amazing, but to me, it's not worth a lot if I don't have energy to do anything. Since he has been a close, outside observer, it was easy for him to explain to me why it will come back quickly. I went from 2 months of being completely bedridden, to 5 months of DRAGGING myself through work and life, to about a year of being either in bed, lying on the couch, and going to appointments--not to mention all of the medications that knocked me down. I guess I can see now why I can't just get up and go! Happily, this recount from an outsider's view made me realize how significant a little thing like the fact that I now sit or stand for the entire day really is. He's really quite an amazing guy.
Til we meet again,
-S
What triggered my need to blog for the day was I was just lamenting to my husband that I am so annoyed that I'm too darn tired to do much in a day. Not having all the pain is really amazing, but to me, it's not worth a lot if I don't have energy to do anything. Since he has been a close, outside observer, it was easy for him to explain to me why it will come back quickly. I went from 2 months of being completely bedridden, to 5 months of DRAGGING myself through work and life, to about a year of being either in bed, lying on the couch, and going to appointments--not to mention all of the medications that knocked me down. I guess I can see now why I can't just get up and go! Happily, this recount from an outsider's view made me realize how significant a little thing like the fact that I now sit or stand for the entire day really is. He's really quite an amazing guy.
Til we meet again,
-S
Monday, August 22, 2011
I think im going to be okay!
Knock on wood. :) So here's where I stand: I finished the bladder instillations, I'm a couple of months into the Elmiron, and I've started a real workout plan. The last two weeks have been pretty good for me. If you've ever had a chronic condition, you're familiar with the pain scale. I had been living in the 5 to 8 range (0 is no pain, 10 is the worst imaginable). I now stay in the 2 to 4 range, with 3 and 4 being pain levels with which I can completely function. The downside is that I'm still super-tired, therefore forcing me to take on life at a cautious pace. However, I seem to have finally gained the ability to pace myself.
Since I'm on my phone where I can't easily see previous posts, not to mention that my memory is horrible (!), I can't remember if I mentioned these two developments: my MRI showed that I have a herniated disc between my 4th and 5th lumbar, and a nerve in my leg may be permanently damaged. That said, I've had to be careful with working out. To make sure I'm improving my overall level of fitness, plus taking care of my back, I've been rotating yoga, strenghtening and cardio. My goal is to work out 6 days/week, but I'm starting with 3.
Also of note is that I'm aware of the precarious nature of my health. Unfortunately for me, it means that I can't yet let someone back into my life that has caused me a great deal of unnecessary stress over the past few months (see previous post for more detail). In my world, stress = pain. I'm just not physically strong enough to confront it right now.
But for now, I focus on the positive. Remember that song from grade school?
Accentuate the positive/ eliminate the negative/ latch on to the affirmative/ don't mess with Mr. In-between.
That's me!
-S
Monday, August 15, 2011
It's a two-post kinda day...
I've been meaning to share this link forever....please, please don't ever say to someone mockingly or tactlessly, "But you don't LOOK sick". Those of us who are sick on the inside, but don't show it on the outside really don't like it. It's like asking a pregnant lady if she's having twins because you think she looks bigger than she should. Not cool. However, I do appreciate the genuine compliments, so keep those coming. ;-)
http://www.butyoudontlooksick.com/
-S
http://www.butyoudontlooksick.com/
-S
Moving in the right direction
Greetings!
Summer has been good to me. First, I get a break from the Fibromyalgia pain that plagued me over the winter (despite a small flare caused by stress from the person that I referred to in my last post). But more importantly, I can't say enough good things about the medical team that is taking care of me right now. My physical therapist is truly committed to her profession and is far more educated and practiced than the last PT I saw. The results are amazing! I went an entire 4 days without taking any percoset, and it is very rare that I need to take more than one half of a pill in a day. Keep in mind, I was up to as many as 6 per day just two months ago.
Aside from that, I am so grateful to be past the first 6 weeks of the bladder instillations. While the medical staff is amazing, the treatments are incredibly painful for me in the short term. However, the long term benefits are outweighing those rotten days after the treatments. I'm about a month and a half into the Elmiron, which is the drug that forms a new layer on the inside of my bladder, making it impossible for new adhesions to grab on to my bladder walls. So...if I've lost you along the way...adhesions cause my own urine to absolutely burn while sitting in my bladder. Because of the burning...I have to pee all of the time because the nerves in my bladder freak out and want me to push out everything that I can. A new coating on my bladder wall and the removal of existing adhesions from the bladder instillations mean that I won't have that constant bladder pain. The problem is that the treatment is not necessarily 100% effective, but I will be able to enjoy a significant reduction in pain...and be able to eat some foods that are more acidic that I am desperately missing right now...specifically chocolate, tomato sauces (especially on pizza!) and coffee!
On another note, I finally had the MRI that was ordered a couple of months ago to figure out why the back of my leg is numb (basically, a line down the center of my hamstring). I am super, super claustrophobic, so I was DREADING this one. Since I'm finally getting off of the painkillers, I just didn't want to be sedated for this one. It was a rough 45 minutes, but the tech was really great--she put a towel over my eyes before sending me into the tube so that I wouldn't see how enclosed I was. It worked! Afterwards, they burned a copy onto a CD for me and told me to take it to my next appointment (which I don't have scheduled), and then the doctor who ordered it can view it at that time. In the meantime, she will be given the notes. Well, at my PT appointment today, my awesome PT was kind enough to peek at it for me and read the notes, though she made me promise to act surprised when I hear it from the Dr, since she's not really supposed to tell me anything. Unfortunately, the MRI found something completely unrelated...story of my life. The disc between my 4th and 5th vertebrae is bulged and it's affecting something on the right side. Unfortunately, it's my LEFT leg that has numbness. So...we'll wait and see what the doctor says and what I need do to about that. The PT said that they will most likely order an EMG next, which should pinpoint the nerve damage, and hopefully even diagnose where it came from.
For now...off to bed.
Peace out,
-S
Summer has been good to me. First, I get a break from the Fibromyalgia pain that plagued me over the winter (despite a small flare caused by stress from the person that I referred to in my last post). But more importantly, I can't say enough good things about the medical team that is taking care of me right now. My physical therapist is truly committed to her profession and is far more educated and practiced than the last PT I saw. The results are amazing! I went an entire 4 days without taking any percoset, and it is very rare that I need to take more than one half of a pill in a day. Keep in mind, I was up to as many as 6 per day just two months ago.
Aside from that, I am so grateful to be past the first 6 weeks of the bladder instillations. While the medical staff is amazing, the treatments are incredibly painful for me in the short term. However, the long term benefits are outweighing those rotten days after the treatments. I'm about a month and a half into the Elmiron, which is the drug that forms a new layer on the inside of my bladder, making it impossible for new adhesions to grab on to my bladder walls. So...if I've lost you along the way...adhesions cause my own urine to absolutely burn while sitting in my bladder. Because of the burning...I have to pee all of the time because the nerves in my bladder freak out and want me to push out everything that I can. A new coating on my bladder wall and the removal of existing adhesions from the bladder instillations mean that I won't have that constant bladder pain. The problem is that the treatment is not necessarily 100% effective, but I will be able to enjoy a significant reduction in pain...and be able to eat some foods that are more acidic that I am desperately missing right now...specifically chocolate, tomato sauces (especially on pizza!) and coffee!
On another note, I finally had the MRI that was ordered a couple of months ago to figure out why the back of my leg is numb (basically, a line down the center of my hamstring). I am super, super claustrophobic, so I was DREADING this one. Since I'm finally getting off of the painkillers, I just didn't want to be sedated for this one. It was a rough 45 minutes, but the tech was really great--she put a towel over my eyes before sending me into the tube so that I wouldn't see how enclosed I was. It worked! Afterwards, they burned a copy onto a CD for me and told me to take it to my next appointment (which I don't have scheduled), and then the doctor who ordered it can view it at that time. In the meantime, she will be given the notes. Well, at my PT appointment today, my awesome PT was kind enough to peek at it for me and read the notes, though she made me promise to act surprised when I hear it from the Dr, since she's not really supposed to tell me anything. Unfortunately, the MRI found something completely unrelated...story of my life. The disc between my 4th and 5th vertebrae is bulged and it's affecting something on the right side. Unfortunately, it's my LEFT leg that has numbness. So...we'll wait and see what the doctor says and what I need do to about that. The PT said that they will most likely order an EMG next, which should pinpoint the nerve damage, and hopefully even diagnose where it came from.
For now...off to bed.
Peace out,
-S
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