Good afternoon!
Yup, haven't been on here much lately. If you know me, it's because I am going through a rough spell with my health issues.
I wanted to pop in here today because I'm dealing with some stress/drama with someone close to me in my life who just can't seem to understand that my illness changes things. Even though I'm not working, I don't have much free time because I'm going through a series of treatments that leave me pretty incapacitated for at least three days out of the week. In general, I'm not the greatest about getting back to people, but as I've stated before, illness makes it worse. So, for those of you who have someone close to you who is dealing with illness, please, please, PLEASE give them the benefit of the doubt and do not take their lack of communication personally.
What I personally tell those close to me in my life is that I always appreciate email/phone calls/texts, etc. and I will do my best to get back to you right away, but it may be a few weeks. Sometimes a message slips through the cracks. What I should start telling people is that I've learned to put a mask on for the world so that even on the days I'm dragging myself places out of obligation, you probably can't tell that I'm hurting. Only a few people in my life will ever get to see behind the mask.
To summarize: I'm only human. A broken human who doesn't have control over her illness and pain.
Any thoughts and responses from the healthy side are welcomed with an open mind.
-S
Thursday, July 28, 2011
Thursday, July 14, 2011
Waiting to take my 10pm medication
Hi,
I have a new medication called Elmiron, which is designed to treat Intersitial Cystitis (common name: Painful Bladder Syndrome, also; abbrieviated as IC). Follow the link if you want more information on that. Anyway, I took my first dose later than planned today, so even though I'm dead tired, I need to wait 9 more minutes before I can take my last dose. So I'm passing the time by blogging.
I've sort of glazed over this in several posts in the past, but the full story is that I was diagnosed with IC in April of 2007. The treatment was to take Elmiron, but also to endure 6 weeks of having catheters inserted into my bladder twice per week, which then lead to the drug Heparin being pumped right in. After holding it for 15 minutes, it comes out, and I go about my day. The Heparin coats the bladder and the adhesions that IC forms, while the Elmiron takes its sweet time (2-4 months) to build a new and protective layer in my bladder so that I no longer suffer from all of the nasty symptoms and pain of this disease. So....I did that, felt great for about a year and a half, and then my pain started coming back, I went to a bunch of doctors that said nothing is wrong with me, other than Endometriosis and a kidney stone, undiagnosing IC, etc...and then I started this blog. The missing piece (maybe the final one!) is that my new PT, as well as my new Uro/gyno, suspect that the cystoscopy (knock me out, put little camera in bladder, examine pictures) that was performed to undiagnose my IC, was actually a prime example of the Elmiron working, aka: a period of remission of IC. Meaning, the adhesions were gone at that point and the Doctor should never have told me that he doesn't think I have IC.
Fast forward to two weeks ago---I'm formally rediagnosed, have been put on a special diet that means no spicy, citrus-y, irritating foods or beverages. Top things on the list: soda, coffee, tea, anything caffinated, and no CHOCOLATE! Also, no citrus fruits, anything with too much Vitamin C, any tomato products, preservatives, or processed foods. I was pretty sure life was over, but I'm getting by. I've even lost almost 10 pounds since I started on this diet., which is pretty necessary at this point.
Additionally, I started the bladder instillations again, except this doctor uses a medicine called DMSO...I have no idea what it is, but it's the only FDA approved combination of drugs approved for use in bladders for IC. I was told it would burn more than the heparin because it actually attacks the adhesions, instead of just coating them, but I was NOT prepared for the pain the first one caused. The thing was done on Monday, I had to sit in the car for over 30 minutes before I could even think about driving, and I was destroyed until Friday. Sadly, I had to miss a party that weekend with my soccer friends from middle/high school. By Saturday, I suspected that the Nurse Practitioner may not have paid attention to my latex allergy in my file, and the next Monday, I confirmed my suspicions. They stuck a latex catheter into my bladder. Yup, it's as bad as it sounds, maybe worse. Keep in mind I can't take any anti-inflammatory drugs because of my bleeding disorder, meaning I just had to tough it out. So, this past Monday, they used a silicone catheter and I fared far better than week one, though it was still really painful.
One other weird side note: There is currently a nationwide shortage of Elmiron, which has no generic, and the drugmakers are being really tight-mouthed about why. Doctors were really baffled because they've never seen a situation like that. Fortunately, my hubby was kind enough to spend a morning calling literally 30 pharmacies and was able to get me 89 pills (just 1 short of a full month's prescription of 3/day). I was taking the pills 2x/day, figuring it will buy some time for the drugmaker to catch up (and using Canada as a last resort), but the supply is now rolling back in. I don't know what happened, but from my days in the business world, I know someone's head is rolling.
Anyway, aside from that, my PT's job right now is literally to make more space in my abdominal cavity, by breaking up adhesions, fixing my pelvic floor, and using neat tricks like kinesio tape. She also hooked me up with a trial TENS unit, but ultimately got me a pretty awesome INF unit that is FINALLY helping to drastically reduce my need for Percoset that I despise to no end. Example: about a month ago, I had to take 6 in one day. Today, which was kind of a bad day, I got through with just 1/2 of a pill!
Otherwise, I still get massages every 3 weeks. Today was that lucky day and I felt pretty good when I left. She really does a wonderful job dealing with my Fibro/Myofacial pain syndrome, and also gets to help out with some of the abdominal adhesions. Once I get back to work, I'll definitely be there once each week.
Overall...if all goes well, the IC could be considered to be in a period of remission within the next month or two. Additionally, my endometriosis could be headed the same way. Plus side: I'll feel great. Downside: I'll have to find some kind of a job again...which I look forward to, but I still don't know what I want to grow up, especially since I've done a lot of growing up in the last year and a half!
Hope you enjoyed what may have crossed the line into TMI on my bladder. :)
Time to take that pill (which, btw, is Elmiron).
-S
I have a new medication called Elmiron, which is designed to treat Intersitial Cystitis (common name: Painful Bladder Syndrome, also; abbrieviated as IC). Follow the link if you want more information on that. Anyway, I took my first dose later than planned today, so even though I'm dead tired, I need to wait 9 more minutes before I can take my last dose. So I'm passing the time by blogging.
I've sort of glazed over this in several posts in the past, but the full story is that I was diagnosed with IC in April of 2007. The treatment was to take Elmiron, but also to endure 6 weeks of having catheters inserted into my bladder twice per week, which then lead to the drug Heparin being pumped right in. After holding it for 15 minutes, it comes out, and I go about my day. The Heparin coats the bladder and the adhesions that IC forms, while the Elmiron takes its sweet time (2-4 months) to build a new and protective layer in my bladder so that I no longer suffer from all of the nasty symptoms and pain of this disease. So....I did that, felt great for about a year and a half, and then my pain started coming back, I went to a bunch of doctors that said nothing is wrong with me, other than Endometriosis and a kidney stone, undiagnosing IC, etc...and then I started this blog. The missing piece (maybe the final one!) is that my new PT, as well as my new Uro/gyno, suspect that the cystoscopy (knock me out, put little camera in bladder, examine pictures) that was performed to undiagnose my IC, was actually a prime example of the Elmiron working, aka: a period of remission of IC. Meaning, the adhesions were gone at that point and the Doctor should never have told me that he doesn't think I have IC.
Fast forward to two weeks ago---I'm formally rediagnosed, have been put on a special diet that means no spicy, citrus-y, irritating foods or beverages. Top things on the list: soda, coffee, tea, anything caffinated, and no CHOCOLATE! Also, no citrus fruits, anything with too much Vitamin C, any tomato products, preservatives, or processed foods. I was pretty sure life was over, but I'm getting by. I've even lost almost 10 pounds since I started on this diet., which is pretty necessary at this point.
Additionally, I started the bladder instillations again, except this doctor uses a medicine called DMSO...I have no idea what it is, but it's the only FDA approved combination of drugs approved for use in bladders for IC. I was told it would burn more than the heparin because it actually attacks the adhesions, instead of just coating them, but I was NOT prepared for the pain the first one caused. The thing was done on Monday, I had to sit in the car for over 30 minutes before I could even think about driving, and I was destroyed until Friday. Sadly, I had to miss a party that weekend with my soccer friends from middle/high school. By Saturday, I suspected that the Nurse Practitioner may not have paid attention to my latex allergy in my file, and the next Monday, I confirmed my suspicions. They stuck a latex catheter into my bladder. Yup, it's as bad as it sounds, maybe worse. Keep in mind I can't take any anti-inflammatory drugs because of my bleeding disorder, meaning I just had to tough it out. So, this past Monday, they used a silicone catheter and I fared far better than week one, though it was still really painful.
One other weird side note: There is currently a nationwide shortage of Elmiron, which has no generic, and the drugmakers are being really tight-mouthed about why. Doctors were really baffled because they've never seen a situation like that. Fortunately, my hubby was kind enough to spend a morning calling literally 30 pharmacies and was able to get me 89 pills (just 1 short of a full month's prescription of 3/day). I was taking the pills 2x/day, figuring it will buy some time for the drugmaker to catch up (and using Canada as a last resort), but the supply is now rolling back in. I don't know what happened, but from my days in the business world, I know someone's head is rolling.
Anyway, aside from that, my PT's job right now is literally to make more space in my abdominal cavity, by breaking up adhesions, fixing my pelvic floor, and using neat tricks like kinesio tape. She also hooked me up with a trial TENS unit, but ultimately got me a pretty awesome INF unit that is FINALLY helping to drastically reduce my need for Percoset that I despise to no end. Example: about a month ago, I had to take 6 in one day. Today, which was kind of a bad day, I got through with just 1/2 of a pill!
Otherwise, I still get massages every 3 weeks. Today was that lucky day and I felt pretty good when I left. She really does a wonderful job dealing with my Fibro/Myofacial pain syndrome, and also gets to help out with some of the abdominal adhesions. Once I get back to work, I'll definitely be there once each week.
Overall...if all goes well, the IC could be considered to be in a period of remission within the next month or two. Additionally, my endometriosis could be headed the same way. Plus side: I'll feel great. Downside: I'll have to find some kind of a job again...which I look forward to, but I still don't know what I want to grow up, especially since I've done a lot of growing up in the last year and a half!
Hope you enjoyed what may have crossed the line into TMI on my bladder. :)
Time to take that pill (which, btw, is Elmiron).
-S
Wednesday, July 6, 2011
Quickie update
Hey all-
I've left a lot hanging since my last post, and this one won't be too helpful. :) But, I want to mention that my Interstitial Cystitis (Commonly called Painful bladder syndrome) was formally re-diagnosed. I've started weekly treatments called bladder instillations, which are even more painful and awkward than they sound. 29 hours after my first treatment and I still can't sit upright! But, they get better as they go and in about 6 weeks, I should notice significant results.
More later.
-S
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