So I was in love..well I am in love. Sadly, my heart has been broken. My love doesn't love me as much as I love him and he has ended our relationship. I miss him terribly. I cry all the time and I can barely get out of bed. As I am unemployed the most I have to do in any day is look for work on-line. So I can in my depression sit here and cry. But this is a blog about IC and not about my love life. Here is what I have learned having IC and going through a break up.
1. I miss chocolate. I don't want to eat anything because I am so damn sad, but I would eat chocolate if I could. So I am faced with the choice, do I give in and eat chocolate and suffer an IC flare up. I am pretty sure a flare up would only make me feel worse.
2. Not eating anything (or barely eating anything) for three days, has some positive effects on my body. One, my bladder doesn't hurt. Probably because aside from water and peppermint tea, it hasn't had to process very much. I've lost about 5 lbs in two days. So my skinny jeans fit.
3. Sadly hardly eating has also resulted in a near chronic headache. I am so weak right now that I can barely focus. So if by this point you are asking why I haven't eaten..simple answer. Food makes me want to vomit. Also I am crying so much that I can barely breathe most of the time, so eating just seems pointless.
4. I haven't had a cigarette since Sunday. If I can keep this up for two more days than I am sure I can officially have quit smoking. Odd to decide to quit in the middle of one of the worst heart breaks of my life, but I haven't craved a cigarette since Sunday.
5. Of course I live in a state with medical cannabis, which is great otherwise I probably wouldn't be able to eat at all and I definitely wouldn't have slept at all. Also the more medicine I take the less I smoke cigarettes, I don't know why this is but it helps me.
6. Dating someone who can't eat dairy when I can't eat anything (in other words, I follow the IC diet and damn that thing is boring) is probably not the best thing in a relationship. We cooked a lot at his place and I made him dairy free shakes along side my vanilla ice cream shakes. But I think it was stressful on the relationship.
Going through a break up is really hard even at the best of times. However, to be 34 nearly 35 years old, separated (and awaiting legal divorce), living with one's mother, and have IC..well not to sound too full of self pity. But its awful. I loved that man so much and I still love him, hopefully tomorrow I will love him a little bit less.
Wednesday, January 11, 2012
Monday, December 19, 2011
Irony for the IC patient
On Friday I had a Cystoscopy and Hydro-Distention of the bladder. This is a pretty common procedure for IC patients. I think it was my 3rd Cystoscopy and my 2nd HD. Anyways, I got knocked out for the procedure (and got my new IUD inserted too) and when I woke up and finally was lucid I discovered something horrible. I couldn't pee. That's right, here I am with a disease that makes me pee all the time and I couldn't get my bladder to work. Turns out this is potential side effect of the this procedure about which nobody had warned me.
So now we cut to what happens when a woman with IC can't pee. Also known as the ironic twist to this story. I went to urgent care that night and they inserted a catheter to drain my bladder and then they let me rest to see if my bladder would finally work properly. After a good solid hour it became clear that my bladder had, at least temporarily, gone on strike. I couldn't pee. Let me just say that as woman with IC, who often has to pee every hour or more, not being able to pee was even worse than peeing every 10 minutes. The pain was horrible.
The doctors at Urgent Care decided the best thing to do was to insert a foley catheter with a bag so that my bladder could just relax and drain easily. So they inserted this torture device into me and sent me home with instructions to return the following day.
Let me be clear. They sent me home with a bag that would collect my urine. I think now would be the best time to say that I had asked my new boyfriend (of only 2 months) to accompany me to the earlier procedure and to urgent care. We then went home, watched some TV, and went to bed. All while I was "wearing" a bag of my own urine.
This was quite possibly the most embarrassing moment of my entire life.
I barely slept.
The next morning, urgent care removed the catheter and I was able to pee normally. I have never been so happy to pee in all my life.
However, now I have a yeast infection (I believe) because of the antibiotics I had to take after the procedure and which are even more important since I just spent an entire night with a catheter inserted into my urethra.
And that is a summary of the worst night of my IC.
So now we cut to what happens when a woman with IC can't pee. Also known as the ironic twist to this story. I went to urgent care that night and they inserted a catheter to drain my bladder and then they let me rest to see if my bladder would finally work properly. After a good solid hour it became clear that my bladder had, at least temporarily, gone on strike. I couldn't pee. Let me just say that as woman with IC, who often has to pee every hour or more, not being able to pee was even worse than peeing every 10 minutes. The pain was horrible.
The doctors at Urgent Care decided the best thing to do was to insert a foley catheter with a bag so that my bladder could just relax and drain easily. So they inserted this torture device into me and sent me home with instructions to return the following day.
Let me be clear. They sent me home with a bag that would collect my urine. I think now would be the best time to say that I had asked my new boyfriend (of only 2 months) to accompany me to the earlier procedure and to urgent care. We then went home, watched some TV, and went to bed. All while I was "wearing" a bag of my own urine.
This was quite possibly the most embarrassing moment of my entire life.
I barely slept.
The next morning, urgent care removed the catheter and I was able to pee normally. I have never been so happy to pee in all my life.
However, now I have a yeast infection (I believe) because of the antibiotics I had to take after the procedure and which are even more important since I just spent an entire night with a catheter inserted into my urethra.
And that is a summary of the worst night of my IC.
Monday, December 5, 2011
IC and the common cold
So I have IC. It's annoying and painful and it limits the way I live. But I have gotten used to it. No use crying over uneaten chocolate. There is one thing that is really getting to me though. I miss cold medicine. More specifically I miss Psuedophed, Nyquil, and that nasty tasting thera-flu. Now that I have IC all those drugs are on the "no-no" list. They would cause a flare just as soon as they made me feel slightly relieved of my cold symptoms. Then where would I be? I'd be sick, congested, coughing, sneezing, and in the ladies room every ten minutes with constant bladder pain. No thank you. I will take my illnesses one at a time please.
But this leaves me, and everyone else with IC, in a bit of a bind over what to do when we get a cold. Its like I am living in the dark ages. I have been sick now for four days and I think I have found some good coping mechanisms. I am going to share them with you dear readers and if you happen to know any other cold coping strategies please feel free to post them to comments.
1. Hot Tea (Peppermint or Chamomile) I don't know why but hot tea seems to at least make me feel a bit better when I am sick. Plus if I add honey to my tea it coats my sore throat. Since I can't have OTC broth and I am too lazy and currently too sick to make broth for myself, hot tea has become the substitute.
2. Afrin nasal spay. However, one must be aware that this stuff is highly addictive. It can only be used for three days tops if you use it every 12 hours as the dosage instructs. Maybe you can stretch it to 5 days if you only use it at night. Afrin (and its competing brands) nasal spray is a great drug. I went from severely congested and feeling like I was drowning to breathing freely for about 8 to 10 hours. This is perfect for when I need to sleep. Its also the only decongestant that doesn't make my bladder cry out in pain.
3. Advil. This stuff is great. It brings down fever and it also brings down the inflammation in my nasal passages that restrict my breathing.
4. Dye-free Benadryl. It helps me breathe a bit more easily and makes me sleepy enough that I can rest my way into better health.
5. Go to the Doctor or urgent care and get a prescription for better drugs. I can't take OTC cough medicine but I can take Tessalon Pearls (http://www.medicinenet.com/benzonatate/article.htm).
6. (I can't do this but I know from others that it works) Neti Pots and Nasal Rinse. Flushing out the sinuses really helps alleviate cold symptoms. Its safe for IC patients as its drug free. Its a bit uncomfortable but not painful. Why don't I do it? I am one of the very few people who have ears nose and throat issues that prevent me from using a Neti pot or a nasal rinse. I get water behind my ears when I do it. But I am the exception. Try it for yourself and see if it helps you.
7. Nasal Saline Spray- Like Afrin but not as effective or addictive as its drug free. It keeps your nasal mucus membrane moist and that will help make you feel much better.
8. Rest and push fluids. Really. Don't think you can just "push through". If you have IC then you get sick with a cold its going to make you more likely to flare. Let's face it. Stress makes this disease worse. So when sick, rest and push fluids.
9. Eat simply. Now is not the time to try new foods. In fact the best way I have found to prevent a flare up that can follow a cold is to keep my diet as simple as possible.
10. (because I really wanted list of 10 things) Stay on all my regular IC meds and supplements. Though I when I am sick I add Colostrum to my supplements as it helps booster the immune system and doesn't anger the bladder.
For more information from a trusted source follow this link..http://www.ichelp.org/page.aspx?pid=964
And remember wash your hands frequently, get your flu shot, avoid people who are sick (send them a card or an email telling them you still love them but not their germs), and get lots of rest during the cold and flu season.
I hope you all stay healthy and flare free.
The Goose Girl
But this leaves me, and everyone else with IC, in a bit of a bind over what to do when we get a cold. Its like I am living in the dark ages. I have been sick now for four days and I think I have found some good coping mechanisms. I am going to share them with you dear readers and if you happen to know any other cold coping strategies please feel free to post them to comments.
1. Hot Tea (Peppermint or Chamomile) I don't know why but hot tea seems to at least make me feel a bit better when I am sick. Plus if I add honey to my tea it coats my sore throat. Since I can't have OTC broth and I am too lazy and currently too sick to make broth for myself, hot tea has become the substitute.
2. Afrin nasal spay. However, one must be aware that this stuff is highly addictive. It can only be used for three days tops if you use it every 12 hours as the dosage instructs. Maybe you can stretch it to 5 days if you only use it at night. Afrin (and its competing brands) nasal spray is a great drug. I went from severely congested and feeling like I was drowning to breathing freely for about 8 to 10 hours. This is perfect for when I need to sleep. Its also the only decongestant that doesn't make my bladder cry out in pain.
3. Advil. This stuff is great. It brings down fever and it also brings down the inflammation in my nasal passages that restrict my breathing.
4. Dye-free Benadryl. It helps me breathe a bit more easily and makes me sleepy enough that I can rest my way into better health.
5. Go to the Doctor or urgent care and get a prescription for better drugs. I can't take OTC cough medicine but I can take Tessalon Pearls (http://www.medicinenet.com/benzonatate/article.htm).
6. (I can't do this but I know from others that it works) Neti Pots and Nasal Rinse. Flushing out the sinuses really helps alleviate cold symptoms. Its safe for IC patients as its drug free. Its a bit uncomfortable but not painful. Why don't I do it? I am one of the very few people who have ears nose and throat issues that prevent me from using a Neti pot or a nasal rinse. I get water behind my ears when I do it. But I am the exception. Try it for yourself and see if it helps you.
7. Nasal Saline Spray- Like Afrin but not as effective or addictive as its drug free. It keeps your nasal mucus membrane moist and that will help make you feel much better.
8. Rest and push fluids. Really. Don't think you can just "push through". If you have IC then you get sick with a cold its going to make you more likely to flare. Let's face it. Stress makes this disease worse. So when sick, rest and push fluids.
9. Eat simply. Now is not the time to try new foods. In fact the best way I have found to prevent a flare up that can follow a cold is to keep my diet as simple as possible.
10. (because I really wanted list of 10 things) Stay on all my regular IC meds and supplements. Though I when I am sick I add Colostrum to my supplements as it helps booster the immune system and doesn't anger the bladder.
For more information from a trusted source follow this link..http://www.ichelp.org/page.aspx?pid=964
And remember wash your hands frequently, get your flu shot, avoid people who are sick (send them a card or an email telling them you still love them but not their germs), and get lots of rest during the cold and flu season.
I hope you all stay healthy and flare free.
The Goose Girl
Monday, November 7, 2011
The IC safe salad
So one of the ironies of IC is that the diet is heavy on green veggies but low on condiments and sauces. I mean what are we supposed to put on these veggies? Think about it, before IC when did you ever just sit down and eat brussels sprouts, spinach, broccoli, etc plain or perhaps with just butter? Before IC my salads had spicy chipotle dressing, ranch, blue cheese, or caesar dressing but after IC eating salads became a challenge. After all a bowl of greens without dressing is kind of like a day without sunshine. However, I love salad and I crave greens so I have designed an IC friendly salad. It consists of baby greens, cucumber, carrot, avocado, parmesan cheese and olive oil. I can add other veggies as I feel like it, for example this weekend I added broccoli and cauliflower. The olive oil and parmesan cheese make a nice replacement for dressing, especially when I add avocado. If you have an IC friendly salad, please post about it as I am always looking for ideas.
Wednesday, July 27, 2011
More supplements
So I am blessed to have a best friend that works at Henry's grocery store. They have a great natural living section filled with vitamins and supplements, and while my friend works in a different department she is incredibly knowledgeable about supplements.
Today I have started taking Biosil http://www.amazon.com/Natrol-Biosil-60-veggie-caps/dp/B0018LRBUW
to help with my hair, skin, and nails. I suspect it may help with the bladder as well because its supposed to help regrow connective tissue and that's the problem with the IC bladder, the GAG layer is defective. So my hope is that this will also help.
This is not my most well written post, I just wanted to jot a quick note about taking a new supplement so I would have a record of when I began. I figure this will help me see if there is any noticeable improvement in either my skins, nails, hair, or bladder.
I should note that I started taking Biosil because I have very brittle nails and I am hoping this will help.
I am also taking a gentle iron supplement because I have mild anemia.
http://www.amazon.com/Solgar-Gentle-Iron-veggie-caps/dp/B00013Z0QA/ref=sr_1_1?s=hpc&ie=UTF8&qid=1311785491&sr=1-1
For those with IC getting an iron supplement can be difficult many come with vitamin C or in soy capsules, this particular brand is safe for IC patients as far as I can tell. I just started it today as well and I will update with any news.
Today I have started taking Biosil http://www.amazon.com/Natrol-Biosil-60-veggie-caps/dp/B0018LRBUW
to help with my hair, skin, and nails. I suspect it may help with the bladder as well because its supposed to help regrow connective tissue and that's the problem with the IC bladder, the GAG layer is defective. So my hope is that this will also help.
This is not my most well written post, I just wanted to jot a quick note about taking a new supplement so I would have a record of when I began. I figure this will help me see if there is any noticeable improvement in either my skins, nails, hair, or bladder.
I should note that I started taking Biosil because I have very brittle nails and I am hoping this will help.
I am also taking a gentle iron supplement because I have mild anemia.
http://www.amazon.com/Solgar-Gentle-Iron-veggie-caps/dp/B00013Z0QA/ref=sr_1_1?s=hpc&ie=UTF8&qid=1311785491&sr=1-1
For those with IC getting an iron supplement can be difficult many come with vitamin C or in soy capsules, this particular brand is safe for IC patients as far as I can tell. I just started it today as well and I will update with any news.
Monday, July 11, 2011
Supplements
So I am blessed to have a very close friend who knows a lot about alternative supplements, also my doctor is open to them and so I feel very supported in choosing to add supplements to my diet. I also find that when I take my supplements it really helps me stay healthier and makes my bladder happy.
I take the following everyday:
Glucosamine & Chondroitin W/Quercetin & Bromelain - I take this instead of Cystoprotek because I like it better, its cheaper, and it works for me. The hope is that is rebuilds the bladder lining and the quercetin reduces inflammation.
Uri care - http://www.himalayausa.com/herbalformulas/uricare.htm
From the website:
Stress Care http://www.himalayausa.com/herbalformulas/stresscare.htm
From the website:
I take the following everyday:
Glucosamine & Chondroitin W/Quercetin & Bromelain - I take this instead of Cystoprotek because I like it better, its cheaper, and it works for me. The hope is that is rebuilds the bladder lining and the quercetin reduces inflammation.
Uri care - http://www.himalayausa.com/herbalformulas/uricare.htm
From the website:
UriCare® is a proprietary herbal formula which naturally promotes a healthy urinary tract and helps maintain normal urine composition and mucosal integrity. It is a natural aid in maintaining healthy water management and helps with temporary water - weight gain.
As a dietary supplement UriCare® assists kidneys and urinary tract in normal functions. It provides normal absorption and utilization for overall healthy urinary tract.
As a dietary supplement UriCare® assists kidneys and urinary tract in normal functions. It provides normal absorption and utilization for overall healthy urinary tract.
- Provides overall support of the kidneys and bladder for normal urinary tract function*
- Supports the mucosal integrity of the urinary tract and normal composition of urine*
- Supports the kidney's crystalloid-colloid balance*
Stress Care http://www.himalayausa.com/herbalformulas/stresscare.htm
From the website:
Healthy living under certain conditions can be undermined by stress and other environmental factors. Coping with the consequences of stress is fast becoming a cornerstone of health and well-being.
StressCare® is a natural proprietary herbal formula which assists in preserving the existing anti-oxidative system within the body's cells. It supports a healthy and normal adrenal gland function and helps keep cortisol levels normal. It also relieves occasional stress, fatigue, frustration, mood swings and sleeplessness.
StressCare® is a natural proprietary herbal formula which assists in preserving the existing anti-oxidative system within the body's cells. It supports a healthy and normal adrenal gland function and helps keep cortisol levels normal. It also relieves occasional stress, fatigue, frustration, mood swings and sleeplessness.
- Relieves occasional stress, fatigue, frustration, mood swings and sleeplessness*
- Has natural antioxidant properties*
- Supports healthy and normally functioning adrenal gland cells*
- Helps keep stress-induced cortisol levels within their normal range
http://www.amazon.com/Jarrow-Formulas-Hyaluronic-Complex-capsules/dp/B000IZXZMW
A little bit about it from the web
BioCell Collagen II is a low molecular weight, water-soluble glycosaminoglycan complex completely derived from chicken sternum cartilage and is standardized to naturally contain at least 20% chondroitin sulfate and 10% hyaluronic acid (50 mg per capsule). Hyaluronic acid provides the fluid matrix for joint lubrication, skin hydration, and skin repair. Unlike ordinary collagen products, patented BioCell Collagen II is a rich source of bioavailable hyaluronic acid and is clinically proven to support joint health.
Why I take it: I take it to help build up my bladder lining.
I also take Spirulina whenever I do a DMSO treatment because it acts as a natural deodorant and helps neutralize the sulfur smell from the DMSO.
My friend gets mine from Henry's market but I can't find a link to it.
All of the supplements that I take are free from soy.
All the best,
The Goose Girl
Sunday, July 10, 2011
DMSO - A Love Hate Relationship
On Monday if all goes according to plan I will pick up my DMSO from the pharmacy and go to the doctor's office for an instillation. I both love and hate DMSO. Here's why. I love that it makes me feel almost "normal" for several weeks. That is, after a DMSO treatment I don't feel my bladder every waking minute of the day. Most people are only aware of their bladder when they feel the need to void, lucky bastards. While I do get occasional instills of Heparin andSolu-Medrol, they aren't as effective for me as the DMSO. So that is why I love it, simply because nothing I have done as worked as well.
But DMSO also has a dark side. First off, it hurts and burns like hell to have it inside the bladder. God forbid the doctor accidentally drip any of the medication on to my labia, which has happened, because it burns like fire. A treatment of DMSO usually involves at least one does of Tramadol about one hour before the instill, this helps reduce some of the pain. Then I get to hold this searing liquid in my bladder for an hour. I swear when I void that stuff, I can feel the pain release as far as my finger tips. So I think I have established that the pain is pretty freaking nasty. If that were DMSO's only negative side effect, well that would be bad enough. Sadly however, its not, DMSO leaves me smelling like rotting broccoli and sulfur. No amount of perfume or mints can cover this odor. The smell is like a gift with purchase, except that gift sucks and the only thing I am purchasing with all this pain and aggravation is a few weeks during which my IC symptoms are relatively mild. Its worth noting that I still have to strictly adhere to the IC diet just one chocolate and all my hard work would be for naught.
Lately I have started taking a "super greens" supplement for a day or two before, the day of, and the days after the DMSO treatment. I have noticed that this helps reduce the amount of time that I smell like a old fart. I am forever thankful to Pigeon for bringing me the super greens and convincing me to give them a try. This time, I started taking them yesterday and my hope is that I will only smell bad for a day or two at most. Whereas, I usually smell bad for at least three days. Since when I smell bad I tend to sequester myself in my home until the coast is clear, DMSO takes me out of my life more than IC does. When I am in flare I will usually still try and go out, but when I smell bad I feel awful subjecting others to the smell. Its really annoying,
So that dear reader is my love hate relationship with DMSO, if your doctor recommends it I would say try it. For me nothing has worked better. If you are on DMSO I would be curious to know how it affects you and how you deal with the side effects.
But DMSO also has a dark side. First off, it hurts and burns like hell to have it inside the bladder. God forbid the doctor accidentally drip any of the medication on to my labia, which has happened, because it burns like fire. A treatment of DMSO usually involves at least one does of Tramadol about one hour before the instill, this helps reduce some of the pain. Then I get to hold this searing liquid in my bladder for an hour. I swear when I void that stuff, I can feel the pain release as far as my finger tips. So I think I have established that the pain is pretty freaking nasty. If that were DMSO's only negative side effect, well that would be bad enough. Sadly however, its not, DMSO leaves me smelling like rotting broccoli and sulfur. No amount of perfume or mints can cover this odor. The smell is like a gift with purchase, except that gift sucks and the only thing I am purchasing with all this pain and aggravation is a few weeks during which my IC symptoms are relatively mild. Its worth noting that I still have to strictly adhere to the IC diet just one chocolate and all my hard work would be for naught.
Lately I have started taking a "super greens" supplement for a day or two before, the day of, and the days after the DMSO treatment. I have noticed that this helps reduce the amount of time that I smell like a old fart. I am forever thankful to Pigeon for bringing me the super greens and convincing me to give them a try. This time, I started taking them yesterday and my hope is that I will only smell bad for a day or two at most. Whereas, I usually smell bad for at least three days. Since when I smell bad I tend to sequester myself in my home until the coast is clear, DMSO takes me out of my life more than IC does. When I am in flare I will usually still try and go out, but when I smell bad I feel awful subjecting others to the smell. Its really annoying,
So that dear reader is my love hate relationship with DMSO, if your doctor recommends it I would say try it. For me nothing has worked better. If you are on DMSO I would be curious to know how it affects you and how you deal with the side effects.
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