Hi,
I'm here and I have a lot of updates to give from the last month, but now isn't a good time for me to provide a huge update. So for now...I'm ok, but it's been a tough month since my meds were switched around. In the long run, I think it's going to be a good thing, but my energy has been zapped by nortriptyline for Fibro and Tramadol for my other chronic pain. Scar tissue and adhesions from endometriosis have been causing me more pain than usual. Through physical therapy myofacial work, we can tell that I have adhesions on my intestines as well as my lower left abdominal cavity. And then, just to top it off, my Physical Therapist is pretty sure that I'm having ghost pain as a result of having my ovary removed in 2007. How dumb is that? Sadly, there aren't any specific treatments to fix any of this. I just have to keep up with PT, take my daily meds, keep exercising, .and know when to take it easy. Oh yes, and there's still the Interstitial Cystitis.
I had a really rough weekend that involved a lot of couch time. Thank goodness my hubby is so good about picking up the slack...of which I leave a lot!
-S
Showing posts with label Endometriosis. Show all posts
Showing posts with label Endometriosis. Show all posts
Sunday, November 20, 2011
Friday, October 14, 2011
Happy Anniversary to me!
Hello,
I've just returned this afternoon from my 9th Wedding Anniversary mini vacay with my hubby. Despite the fact that we both have colds...his turned into an infection requiring anti-b's...and my pain is still flaring, we had an amazing, relaxing time in a cabin at a bed and breakfast. Since we didn't feel well, we didn't do the normal activities like shop in the tourist town, go to a bar, or take a boat ride, but we did manage to make it to dinner one night. We also took a 50 mile drive through farmland to take in the fall colors and I saw the first Bald Eagle that I've ever seen in the wild.
What really got me during the trip was that even though I was sick and in pain, I felt so much better than I did two years ago when we stayed in the same place for our Anniversary. It was during the time I was on a 2 month medical leave, about a week after I had a laparoscopy for my endometriosis (which didn't help) and at a time where I was taking 10-12 percoset each DAY. I barely got out of the bed during the 20 hours that we were there and not surprisingly, I don't remember much of the trip at all. I say this all the time, especially here--but I always think that I haven't made the progress that I should have, until something makes me think back. Then I realize how much hope I've been given since those hopeless months.
As for the next week, I begin Monday with my cholesterol test, followed by an appointment with my primary care physician to figure out what do to with my Fibro this winter, my pain medications for the pelvic/IC pain, and the GI stuff that's still causing me problems. I'm trying to centralize my treatment into as few doctors as possible, so I hope that goes well. On the downside, I heard a rumor that my awesome new primary care doc is leaving the practice, so that is going to put a gigantic wrench in my healthcare. Also, I have PT on Wednesday and a bladder instillation on Thursday, which is really going to hurt since I haven't had one in two months. I'm sure I'll have more updates on that this week.
For now, I sleep.
-S
Friday, October 7, 2011
Still not feeling great
Happy Friday,
I'm really kinda falling apart this week. No matter what I eat or don't eat, I can't get my digestive system on track, so I feel like I'm walking around with the flu. Sleep continues to elude me and my pelvic pain (which is actually more abdominal pain) at the moment is still flaring. My PT was able to confirm that the source of the pain is flared scar tissue/endometriosis adhesions. And being autumn in Wisconsin, my Fibro is flaring. My new symptom is random numbness in my arms. Unfortunately, there isn't a quick fix for any of this...but I guess if there was, I wouldn't be here blogging, huh?
So, the solution: I have an appointment with my primary care doctor on the 17th, along with a fasting cholesterol test and then we'll figure out how to attack all of this stuff. Not so coincidentally, I also have my bladder instillation at the hospital up the road later that day. It's nice to get things done all at once. Overall, I'm pretty down about it all this week. Such a mess. On the bright side, I was able to get four yoga workouts in in the last few days. I skipped a full workout today because we're heading back to Miller Park today and I know that I need to bank my energy for such events.
And a publicly shared note-to-self here...I have a few things that I've been meaning to talk about lately that I haven't gotten to. Here's a list for the hopefully near future:
-S
I'm really kinda falling apart this week. No matter what I eat or don't eat, I can't get my digestive system on track, so I feel like I'm walking around with the flu. Sleep continues to elude me and my pelvic pain (which is actually more abdominal pain) at the moment is still flaring. My PT was able to confirm that the source of the pain is flared scar tissue/endometriosis adhesions. And being autumn in Wisconsin, my Fibro is flaring. My new symptom is random numbness in my arms. Unfortunately, there isn't a quick fix for any of this...but I guess if there was, I wouldn't be here blogging, huh?
So, the solution: I have an appointment with my primary care doctor on the 17th, along with a fasting cholesterol test and then we'll figure out how to attack all of this stuff. Not so coincidentally, I also have my bladder instillation at the hospital up the road later that day. It's nice to get things done all at once. Overall, I'm pretty down about it all this week. Such a mess. On the bright side, I was able to get four yoga workouts in in the last few days. I skipped a full workout today because we're heading back to Miller Park today and I know that I need to bank my energy for such events.
And a publicly shared note-to-self here...I have a few things that I've been meaning to talk about lately that I haven't gotten to. Here's a list for the hopefully near future:
- Weight
- The funny side of pain
- Forums
I'm already forgetting at least one thing that I know has been on my mind so I hope it surfaces.
-S
Thursday, September 29, 2011
Update
Hi,
The last week had some pretty rough moments. Endometriosis. I was supposed to take the Lysteda once more this month to see if I truly had an allergic reaction, but I couldn't make myself do it. That means that I went through "that time of the month" with nothing to help my Endometriosis. I'm positive that it has spread again because I hurt from my ribcage to my thighs, mostly on the left side, which is the side that's all scarred up and missing an ovary. Since IC is connected to this, I also suffered through a flare of that for the first couple of days. Blech. Luckily, I'm on the upswing again...for another 28 days or so. And as the weather changes, my Fibro is making itself known. Also, just for kicks, my body decided to let my ezcema out early this year. All of this led to one "it's not fair breakdown". Surprisingly, I got over it in less than five minutes and went about my day after that. They used to last hours and hours, so this is a way more efficient way to go about it. :)
Otherwise, life is super busy right now and I'm getting a little worried that I'm not going to be able to keep up without a major setback. As prevention, I'm keeping up with my PT exercises for my slipped disk and doing yoga every single day that I can drag myself through it to stay flexible(ish), and to get stronger(ish).
-S
The last week had some pretty rough moments. Endometriosis. I was supposed to take the Lysteda once more this month to see if I truly had an allergic reaction, but I couldn't make myself do it. That means that I went through "that time of the month" with nothing to help my Endometriosis. I'm positive that it has spread again because I hurt from my ribcage to my thighs, mostly on the left side, which is the side that's all scarred up and missing an ovary. Since IC is connected to this, I also suffered through a flare of that for the first couple of days. Blech. Luckily, I'm on the upswing again...for another 28 days or so. And as the weather changes, my Fibro is making itself known. Also, just for kicks, my body decided to let my ezcema out early this year. All of this led to one "it's not fair breakdown". Surprisingly, I got over it in less than five minutes and went about my day after that. They used to last hours and hours, so this is a way more efficient way to go about it. :)
Otherwise, life is super busy right now and I'm getting a little worried that I'm not going to be able to keep up without a major setback. As prevention, I'm keeping up with my PT exercises for my slipped disk and doing yoga every single day that I can drag myself through it to stay flexible(ish), and to get stronger(ish).
-S
Monday, September 12, 2011
My car has become my enemy
Hello,
While I've been happily continuing my foray back into the world, I'm learning that I have a few more limitations. One of them is that time spent sitting in a car aggravates my endometriosis. I have adhesions on my Illiopsoas muscle, which you can see specifically on the area labeled #2 in this diagram. Sitting for hours on end in a car causes strain to the muscle, which is in turn aggravated by the adhesions. The problem is that the adhesions really can't be surgically removed, and even if they are, they will grow back. So, my wonderful physical therapist worked on the muscle through her lunch hour today and also gave me a great stretch that will help to keep the muscles from spasming. So, for those of you fortunate to take road trips with me, you'll find me begging you to pull over once in awhile so that I can stretch.
Unfortunately, I'm still hurting this evening, but between the facts that I have some tools to manage the pain, as well as a break from driving anywhere for a few days, I'm feeling pretty good about the long term management of the pain.
-S
Friday, September 9, 2011
Trying to stay ahead of the pain
Greetings,
I'm not sure what started it, but my abdominal and pelvic pain has been intensifying over the last few days. Fortunately, I now have a ton of tools to help cut it off. I always start with yoga and specific stretches so that the muscles from my abdomen through my legs don't freak out in turn. If that happens, I'm down for a few days and it becomes very tough to bounce back. I also have my interferential device (which I've previously referred to as a TENS unit because I didn't know the real name for the thing). Anyway, they are very similar, but I'm told the interferential device has the same, aka better than a TENS, technology that is used in the PT clinic. The purpose of the machine is to confuse pain signals from my nerves in my abdomen, which gives me a significant amount of relief, though unfortunately it's temporary. My next plan of attack is to restrict my diet even further so that I'm not contributing to the Intertitial Cystitis. If I make it through the weekend, I have physical therapy on Monday, which should effectively work as a "reset" button.
As a recap if you're just joining me: Pelvic pain is an ugly and complicated beast. Contributing factors in my case are pain from Interstitial Cystitis, pain from Endometriosis, and also from scar tissue left behind in my abdominal cavity as a result of both the diseases and the surgeries associated with them. Also, my Fibromyalgia causes my brain to constantly send pain signals to my nerves and they are very difficult to shut off.
Aside from all of this, I'm still extremely tired most of the time, so forcing myself to do the workout that I need to do is darn near impossible some days. But, I'm going to power through that and then hopefully have a quiet day on the couch. We have lots going on this weekend, so I'm hoping to make it through everything, and perhaps even enjoy myself.
Updates to follow...
-S
I'm not sure what started it, but my abdominal and pelvic pain has been intensifying over the last few days. Fortunately, I now have a ton of tools to help cut it off. I always start with yoga and specific stretches so that the muscles from my abdomen through my legs don't freak out in turn. If that happens, I'm down for a few days and it becomes very tough to bounce back. I also have my interferential device (which I've previously referred to as a TENS unit because I didn't know the real name for the thing). Anyway, they are very similar, but I'm told the interferential device has the same, aka better than a TENS, technology that is used in the PT clinic. The purpose of the machine is to confuse pain signals from my nerves in my abdomen, which gives me a significant amount of relief, though unfortunately it's temporary. My next plan of attack is to restrict my diet even further so that I'm not contributing to the Intertitial Cystitis. If I make it through the weekend, I have physical therapy on Monday, which should effectively work as a "reset" button.
As a recap if you're just joining me: Pelvic pain is an ugly and complicated beast. Contributing factors in my case are pain from Interstitial Cystitis, pain from Endometriosis, and also from scar tissue left behind in my abdominal cavity as a result of both the diseases and the surgeries associated with them. Also, my Fibromyalgia causes my brain to constantly send pain signals to my nerves and they are very difficult to shut off.
Aside from all of this, I'm still extremely tired most of the time, so forcing myself to do the workout that I need to do is darn near impossible some days. But, I'm going to power through that and then hopefully have a quiet day on the couch. We have lots going on this weekend, so I'm hoping to make it through everything, and perhaps even enjoy myself.
Updates to follow...
-S
Tuesday, August 30, 2011
Today was a rough one!
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
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
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