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.

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:


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.
  • 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.
  • 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.

Thursday, July 7, 2011

a brief update/vices

I hope everyone had a wonderful 4th of July. I spent mine in the urgent care for 3 hours followed by about 6 hours in the ER, where I was finally given an instill of Heprin +Solu-Medrol. Hooray for good meds and the pain relief they bring.

I don't have to much else to say about this most recent flare up. I am not 100% sure as to what brought it own though I think it was a combination of stress, a small lapse in diet (I had the tiny bit of chocolate at the end of skinny cow cone + the vanilla skinny cow cone), and perhaps cigarettes. Yes, dear reader I started smoking I am also quitting smoking. Making me she shortest smoker in history, I smoked for a few short months and now I am done. Its expensive, smelly, gives me headaches, and now aggravates my bladder. So no point in doing it, is there? Nope, I think not. Well, its also pleasurable and since I have so few vices I like to keep those I can. But sadly this is one I have to let go.

I no longer eat chocolate, or drink alcohol, or eat anything too interesting, for personal reasons I am currently abstinent, I no longer smoke...cigarettes, thank god I dance or I would feel like I had become a nun or something.

What vices do you have dear reader?

Sunday, July 3, 2011

Flare up or IC...

So on Thursday night I went dancing as is my usual habit. Around 11 or 12 I noticed that my urethra was becoming irritated and I felt like I had to pee. Almost immediately I felt that all to familiar pressure and pain in my bladder. I took some pyridium (AZO) and drank some water and went on with my evening. The next morning I called my doctors office only to learn that my doc won't be back until fall and the office they referred me to can't take me till August. I did manage to score an appointment with a doctor for the 11th and I went to urgent care in the hopes that they might do a instillation if I brought the meds.
They tested me for UTI and put me on Bactrim because I tested positive for nitrates. The culture should be back on Monday or Tuesday and that will  tell me for sure if I have a flare up or UTI.
In the mean time my life has become about pain management. Despite the pain I went out dancing on both Friday and Saturday night and tonight I am visiting friends who live about 40 minutes away. All of this is made more difficult by the fact that my bladder hurts and I feel like I need to pee all the time. However, when I am in the restroom I have a difficult time actually peeing. Its damn annoying. I just don't want IC to run my life.

Here is how I am coping. I keep dancing. I am taking all my medications and supplements, I have smoked until I feel better. Though I realized I can't mix tramadol and smoking, because it makes me really anxious and paranoid. That was not fun. I have also used valium suppositories to try and get my pelvic floor muscles to relax. My bladder still hurts too, though not as much as if I hadn't been medicated. Right now I have horrible headache, which oddly enough keeps my mind off my bladder.

I hoping to feel better before the 11th, but I will still go see the doctor and do a DMSO treatment (providded I have the script still) just to make sure that my bladder stays happy. There is nothing that I can do sometimes to predict a flare up, after all I hadn't eaten anything new or been under new stress. Well, except that Monday would have been my 14th wedding/relationship anniversary and this year it will just be independence day. My ex-husband and I agreed not to talk on that day even though we remain friends.

This disease really does just suck sometimes. Okay, I am done bitching off to go live  my life.

Saturday, July 2, 2011

Random flares

So on Thursday night I was out dancing and I began to feel that all to familiar twinge in my urethra followed by a sore and weighty feeling in my bladder. By morning my bladder was in full "internal migraine" flare up. So I call my doctors office, the people I have relying on the past 18 months to keep me sane and healthy, and discover that my doctor is out of town till september. Now, I already knew that the owner of the practice was retiring and that there would be changes. But I still expected a better continuity of care. They referred me to another uro/gyno office but that doctor's office couldn't take me until August. So I called back to "my" office and tried to figure out what could be done. The one remaining doctor for the office is not scheduled to come in until July 11th, so I managed to score an appointment for that day. I then packed myself off to urgent care so that I rule out a UTI, which didn't exactly happen. I tested positive for nitrates but negative for leukocytes, so they put me on Bactrim and told me to call back for my culture in three days. I also got some tramadol and azo for the discomfort.


The pain comes and goes at present. I don't have too much urgency, just that pain and pressure in the bladder that only ends when I void. I am taking tramadol and inhaling ancient herbal remedies for pain. I made sure to get religion on my supplements as I had been a bit lax the last few weeks.  My hope is that this is a minor UTI and that they Bactrim knocks it out quick. I know I didn't stray from my IC diet or have any other reason to bring on a flare up (except for the not being good about supplements). But I also know that IC is a bitch of a disease that sometimes rears its ugly head for no reason.