30 Things About My Invisible Illness You May Not Know
This isn't so much a meme as an interview. This week has been Invisible Illness Awareness Week, but I would post this even if it wasn't. For those of you that might be squeamish about female things the Illness I was dealing with is centrally located to that area. I talk about it, and I'm not ashamed about it, but not everyone wants to read about it.
1. The illness I live with is:
This is kind of a mixed question for me. Last year I was told that I had Interstitial Cystitis, which is a chronic bladder condition without a cure. The easy way that I would explain IC is to think of the worst bladder infection you've ever had. Make it worse than that. And it doesn't go away. But then, at the beginning of this year, I was told that what one doctor thought was IC was actually most likely a pelvic floor dysfunction. Thankfully the treatment for PFD actually worked and in that regard I'm currently pain free, but I'm still going to talk about it.
I also have extremely weak ankles and have since I was a child. I have chronic pain in my left arm, near the bicep area, from an injury that received while donating plasma as well. I'm really only going to talk about the IC here. It's the truly invisible one, and the one that no one really seems to know about.
2. I was diagnosed with it in the year:
The IC was diagnosed in late July of 2008. Putting the date down feels kind of strange to me. I feel like I dealt with it much longer than almost a year. The changed diagnosis of Pelvic Floor Dysfunction was given to me in April of this year. The arm injury occurred around late September of 2006, and my ankles have always had a tendency to turn on me.
3. But I had symptoms since:
I had symptoms for IC for a few months before the diagnosis, the arm pain started with the injury, and the ankles have kind of always been there.
4. The biggest adjustment I’ve had to make is:
Dealing with IC was a monstrously huge adjustment. One of the few ways to get relief from the constant pain and burning from IC is to follow a very strict diet. Anything acidic or spicy was out. This means that the only things that were safe for me to drink were water and milk, and some herbal teas on an occasional basis. Nearly all fruits and several vegetables were on the Do Not Eat list as well. Chocolate was a no-no. Even thinking about coffee caused me pain.
If the dietary restrictions weren't enough IC left me constantly either in the bathroom or in search of one. It never mattered if I had just been. I always felt like I had to pee. I had to have a rather complex bathroom ritual as well. Because of the treatments I was undergoing I was at a higher than usual risk for a UTI. Every time I went to the restroom I was supposed to sanitize my hands, rinse with clean water instead of using toilet paper, and put neosporen around my urethra. I used a bottle that was intended for hair dye that I found at Sally Beauty Supply for the rinsing. It was purse sized with an angled tip, which made things somewhat easier.
I know some of this is probably already TMI, but if I'm going to talk about it I'm going to talk about it openly, honestly, and without shame. Between the constant burning around my urethra and cramps in my abdomen sex was pretty much out of the question. Daniel had the patience of a saint when it came to bedroom issues and never once hurt me or tried to push me. No matter how much understanding there is having that intimacy basically taken away from you can be very hard on a relationship.
5. Most people assume:
I always had a suspicion that people would think I was faking, or that I was exaggerating my symptoms. On a good day you would never have guessed that anything was wrong with me, but even on a good day I was in pain.
6. The hardest part about mornings are:
Despite the fact that when I was awake I would pee sometimes over ten times an hour when I was asleep I rarely woke up to go to the bathroom. The first bathroom trip of the morning was always very painful for me because my bladder was overly full.
7. My favorite medical TV show is:
Wow, this feels a little unrelated to me. The only medical shows that I watch semi regularly are House and Scrubs. Both are for the lolz, but in very different ways.
8. A gadget I couldn’t live without is:
When I was dealing with the IC symptoms I would have been lost without my little squirt bottle, a heating pad, and KY.
9. The hardest part about nights are:
I tend to sleep on my stomach, or angled between my side and stomach. It was really hard to get to sleep in a different position, and very painful to sleep on my stomach. Getting comfortable was hard. I was taking over the counter sleep aids nearly every night.
10. Each day I take __ pills & vitamins.
Oh my... As of right now I'm down to a Zantac a day for heartburn, but while I had the IC going let's see... I took a Zantac, Clariten and Lexapro in the morning, usually chased with a Darvocet for pain management. I took two to three Preliefs before every meal. I took a Detrol LA every night before bed. At time I would be on two or three different antibiotics and there were various pills that were supposed to be anti-inflammatories for the urethra that turned my urine every color of the rainbow (including Smurf blue and purple once). I had Phenegren on hand to help counteract the nausea from all of the other medicines. Sometimes I was able to get Toradol, which I pretty much took every time the clock said I could. It was the only pain medicine that had no adverse side effects on me and nearly knocked out the pain completely. Unfortunately Toradol is horrible for your stomach and you're not supposed to take it more than five days in a row. I was also taking a couple of different herbal supplements to help with libido/pain issues.
All that and I feel like I've forgotten something.
11. Regarding alternative treatments I:
To try to treat the IC symptoms I followed all the things I mentioned above. I also saw a Nurse Practitioner on a weekly basis for bladder treatments. These treatments were a wash of steroids and a numbing agent that were all inserted into my bladder by a catheter. For nearly a year I was catheterized almost every week.
The eventual treatment that proved to be effective is probably considered an alternative treatment, which is just plain stupid to me. Pelvic Floor Dysfunction, what I actually had instead of IC, is a muscle dysfunction. It can be treated the same way any muscle problems can be treated. I went to physical therapy for it. And yes, that does mean that I was on the receiving end of physical therapy massages in my vagina.
My therapist was a woman, and she was wonderful about going slowly and making sure that I wasn't uncomfortable. And yes, this was prescribed by my doctor. A typical session of PT involved muscle massage both internally and externally, use of an ultrasound machine on the muscles internally and externally, and use of an electrotherapy machine on the muscles internally and externally. The various machines and massages were usually followed by testing my muscles with a sensor that was placed internally. The at rest reading was supposed to be 2 or under. On a scale of 20 my at rest read over ten at the first session. By the end of PT my at rest was down to a nice normal 1 to 1.5.
During these sessions we usually chatted like any two women would about our husbands, or family, or what was on tv. It wasn't weird, it wasn't pervy, it was medical, and necessary, and possibly saved my life. My symptoms might not have been life threatening, but what they were doing to me certainly was.
12. If I had to choose between an invisible illness or visible I would choose:
I agree with what everyone else said, no illness. But there are advantages and disadvantages to both visible and invisible illnesses. If you can see it than you won't doubt me, but chances are you will treat me differently.
13. Regarding working and career:
I've been unemployed pretty much since my diagnosis. I was fired because of the work I was missing, and I've yet to find a job now that I'm finally healthy enough to do so.
14. People would be surprised to know:
Probably about the PT stuff. It sounds very weird, but it really wasn't. All my friends and family that I told about it were shocked. Like I told my therapist on my first appointment, at that point I had seen so many doctors so often that what little embarrassment I had was more to do with if I had remembered to shave my legs.
15. The hardest thing to accept about my new reality has been:
Thankfully the symptoms that I dealt with from the misdiagnosed IC are gone now. The whole situation was very hard for me to deal with though. I was very depressed.
16. Something I never thought I could do with my illness that I did was:
Well, it wasn't a completely "dry" year in the bedroom. Despite limitations we managed to keep our relationship alive.
17. The commercials about my illness:
There are no commercials about IC. Nobody really knows about it at all.
18. Something I really miss doing since I was diagnosed is:
See above about symptoms being resolved.
19. It was really hard to have to give up:
Everything. The fruit was the hardest out of the food. Sweet Tea was the hardest beverage to give up.
20. A new hobby I have taken up since my diagnosis is:
I crocheted before, and I still crochet, but I crocheted more while I was hurting than anything else. Focusing on the minutiae of each little stitch was a good way to try to forget.
21. If I could have one day of feeling normal again I would:
For the most part I do feel normal now, at least in that regard. My left arm hasn't been resolved yet, and my ankles are a constant thing to watch out for, but the main subject of this post was the IC.
22. My illness has taught me:
Patience and creativity. Appreciate for sugar cookies and milk. That peppermint herbal tea is actually pretty good iced and sweetened. Not to judge. Not to assume. Not to be ashamed of what I was going through.
23. Want to know a secret? One thing people say that gets under my skin is:
But you don't look sick! And the age old favorite "Aren't you too young for that?!"
24. But I love it when people:
Were supportive and would just listen. The people that went out of their way to make foods and beverages that I could have were amazing.
25. My favorite motto, scripture, quote that gets me through tough times is:
I didn't have a particular one.
26. When someone is diagnosed I’d like to tell them:
Nothing. I'd like to give them a big hug and tell them that when they're ready I have some useful information I'd be glad to pass on. When you're first diagnosed with anything the last thing you would want is a flood of information when all you really need is sympathy.
27. Something that has surprised me about living with an illness is:
How much my life could be totally affected without appearing to be at all.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Daniel was absolutely wonderful in so many ways. He would bring me donuts, because they were one of my favorite treats that I could actually eat. He would help me with heating pads and massages and anything he could do.
29. I’m involved with Invisible Illness Week because:
No one should have to feel like they're the only one dealing with this.
30. The fact that you read this list makes me feel:
A bit exposed to tell the truth, and very grateful. I have a lot of new people on Friends List now that probably didn't know all this about me because it's mostly been resolved now and I'm not talking about it as much.
1. The illness I live with is:
This is kind of a mixed question for me. Last year I was told that I had Interstitial Cystitis, which is a chronic bladder condition without a cure. The easy way that I would explain IC is to think of the worst bladder infection you've ever had. Make it worse than that. And it doesn't go away. But then, at the beginning of this year, I was told that what one doctor thought was IC was actually most likely a pelvic floor dysfunction. Thankfully the treatment for PFD actually worked and in that regard I'm currently pain free, but I'm still going to talk about it.
I also have extremely weak ankles and have since I was a child. I have chronic pain in my left arm, near the bicep area, from an injury that received while donating plasma as well. I'm really only going to talk about the IC here. It's the truly invisible one, and the one that no one really seems to know about.
2. I was diagnosed with it in the year:
The IC was diagnosed in late July of 2008. Putting the date down feels kind of strange to me. I feel like I dealt with it much longer than almost a year. The changed diagnosis of Pelvic Floor Dysfunction was given to me in April of this year. The arm injury occurred around late September of 2006, and my ankles have always had a tendency to turn on me.
3. But I had symptoms since:
I had symptoms for IC for a few months before the diagnosis, the arm pain started with the injury, and the ankles have kind of always been there.
4. The biggest adjustment I’ve had to make is:
Dealing with IC was a monstrously huge adjustment. One of the few ways to get relief from the constant pain and burning from IC is to follow a very strict diet. Anything acidic or spicy was out. This means that the only things that were safe for me to drink were water and milk, and some herbal teas on an occasional basis. Nearly all fruits and several vegetables were on the Do Not Eat list as well. Chocolate was a no-no. Even thinking about coffee caused me pain.
If the dietary restrictions weren't enough IC left me constantly either in the bathroom or in search of one. It never mattered if I had just been. I always felt like I had to pee. I had to have a rather complex bathroom ritual as well. Because of the treatments I was undergoing I was at a higher than usual risk for a UTI. Every time I went to the restroom I was supposed to sanitize my hands, rinse with clean water instead of using toilet paper, and put neosporen around my urethra. I used a bottle that was intended for hair dye that I found at Sally Beauty Supply for the rinsing. It was purse sized with an angled tip, which made things somewhat easier.
I know some of this is probably already TMI, but if I'm going to talk about it I'm going to talk about it openly, honestly, and without shame. Between the constant burning around my urethra and cramps in my abdomen sex was pretty much out of the question. Daniel had the patience of a saint when it came to bedroom issues and never once hurt me or tried to push me. No matter how much understanding there is having that intimacy basically taken away from you can be very hard on a relationship.
5. Most people assume:
I always had a suspicion that people would think I was faking, or that I was exaggerating my symptoms. On a good day you would never have guessed that anything was wrong with me, but even on a good day I was in pain.
6. The hardest part about mornings are:
Despite the fact that when I was awake I would pee sometimes over ten times an hour when I was asleep I rarely woke up to go to the bathroom. The first bathroom trip of the morning was always very painful for me because my bladder was overly full.
7. My favorite medical TV show is:
Wow, this feels a little unrelated to me. The only medical shows that I watch semi regularly are House and Scrubs. Both are for the lolz, but in very different ways.
8. A gadget I couldn’t live without is:
When I was dealing with the IC symptoms I would have been lost without my little squirt bottle, a heating pad, and KY.
9. The hardest part about nights are:
I tend to sleep on my stomach, or angled between my side and stomach. It was really hard to get to sleep in a different position, and very painful to sleep on my stomach. Getting comfortable was hard. I was taking over the counter sleep aids nearly every night.
10. Each day I take __ pills & vitamins.
Oh my... As of right now I'm down to a Zantac a day for heartburn, but while I had the IC going let's see... I took a Zantac, Clariten and Lexapro in the morning, usually chased with a Darvocet for pain management. I took two to three Preliefs before every meal. I took a Detrol LA every night before bed. At time I would be on two or three different antibiotics and there were various pills that were supposed to be anti-inflammatories for the urethra that turned my urine every color of the rainbow (including Smurf blue and purple once). I had Phenegren on hand to help counteract the nausea from all of the other medicines. Sometimes I was able to get Toradol, which I pretty much took every time the clock said I could. It was the only pain medicine that had no adverse side effects on me and nearly knocked out the pain completely. Unfortunately Toradol is horrible for your stomach and you're not supposed to take it more than five days in a row. I was also taking a couple of different herbal supplements to help with libido/pain issues.
All that and I feel like I've forgotten something.
11. Regarding alternative treatments I:
To try to treat the IC symptoms I followed all the things I mentioned above. I also saw a Nurse Practitioner on a weekly basis for bladder treatments. These treatments were a wash of steroids and a numbing agent that were all inserted into my bladder by a catheter. For nearly a year I was catheterized almost every week.
The eventual treatment that proved to be effective is probably considered an alternative treatment, which is just plain stupid to me. Pelvic Floor Dysfunction, what I actually had instead of IC, is a muscle dysfunction. It can be treated the same way any muscle problems can be treated. I went to physical therapy for it. And yes, that does mean that I was on the receiving end of physical therapy massages in my vagina.
My therapist was a woman, and she was wonderful about going slowly and making sure that I wasn't uncomfortable. And yes, this was prescribed by my doctor. A typical session of PT involved muscle massage both internally and externally, use of an ultrasound machine on the muscles internally and externally, and use of an electrotherapy machine on the muscles internally and externally. The various machines and massages were usually followed by testing my muscles with a sensor that was placed internally. The at rest reading was supposed to be 2 or under. On a scale of 20 my at rest read over ten at the first session. By the end of PT my at rest was down to a nice normal 1 to 1.5.
During these sessions we usually chatted like any two women would about our husbands, or family, or what was on tv. It wasn't weird, it wasn't pervy, it was medical, and necessary, and possibly saved my life. My symptoms might not have been life threatening, but what they were doing to me certainly was.
12. If I had to choose between an invisible illness or visible I would choose:
I agree with what everyone else said, no illness. But there are advantages and disadvantages to both visible and invisible illnesses. If you can see it than you won't doubt me, but chances are you will treat me differently.
13. Regarding working and career:
I've been unemployed pretty much since my diagnosis. I was fired because of the work I was missing, and I've yet to find a job now that I'm finally healthy enough to do so.
14. People would be surprised to know:
Probably about the PT stuff. It sounds very weird, but it really wasn't. All my friends and family that I told about it were shocked. Like I told my therapist on my first appointment, at that point I had seen so many doctors so often that what little embarrassment I had was more to do with if I had remembered to shave my legs.
15. The hardest thing to accept about my new reality has been:
Thankfully the symptoms that I dealt with from the misdiagnosed IC are gone now. The whole situation was very hard for me to deal with though. I was very depressed.
16. Something I never thought I could do with my illness that I did was:
Well, it wasn't a completely "dry" year in the bedroom. Despite limitations we managed to keep our relationship alive.
17. The commercials about my illness:
There are no commercials about IC. Nobody really knows about it at all.
18. Something I really miss doing since I was diagnosed is:
See above about symptoms being resolved.
19. It was really hard to have to give up:
Everything. The fruit was the hardest out of the food. Sweet Tea was the hardest beverage to give up.
20. A new hobby I have taken up since my diagnosis is:
I crocheted before, and I still crochet, but I crocheted more while I was hurting than anything else. Focusing on the minutiae of each little stitch was a good way to try to forget.
21. If I could have one day of feeling normal again I would:
For the most part I do feel normal now, at least in that regard. My left arm hasn't been resolved yet, and my ankles are a constant thing to watch out for, but the main subject of this post was the IC.
22. My illness has taught me:
Patience and creativity. Appreciate for sugar cookies and milk. That peppermint herbal tea is actually pretty good iced and sweetened. Not to judge. Not to assume. Not to be ashamed of what I was going through.
23. Want to know a secret? One thing people say that gets under my skin is:
But you don't look sick! And the age old favorite "Aren't you too young for that?!"
24. But I love it when people:
Were supportive and would just listen. The people that went out of their way to make foods and beverages that I could have were amazing.
25. My favorite motto, scripture, quote that gets me through tough times is:
I didn't have a particular one.
26. When someone is diagnosed I’d like to tell them:
Nothing. I'd like to give them a big hug and tell them that when they're ready I have some useful information I'd be glad to pass on. When you're first diagnosed with anything the last thing you would want is a flood of information when all you really need is sympathy.
27. Something that has surprised me about living with an illness is:
How much my life could be totally affected without appearing to be at all.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Daniel was absolutely wonderful in so many ways. He would bring me donuts, because they were one of my favorite treats that I could actually eat. He would help me with heating pads and massages and anything he could do.
29. I’m involved with Invisible Illness Week because:
No one should have to feel like they're the only one dealing with this.
30. The fact that you read this list makes me feel:
A bit exposed to tell the truth, and very grateful. I have a lot of new people on Friends List now that probably didn't know all this about me because it's mostly been resolved now and I'm not talking about it as much.