The Journey is Different For Everyone

It's been a long and painful road to walk these 2 1/2 months. I remember the day it all began and exactly where I was and what I was doing when I felt what would completely change my life. Sitting on the couch, reading a book with my husband by my side and getting a phone call from my dad that he was extremely stressed out and needed me to come to his house. It felt like any other bladder infection or UTI I can remember having and contacted my doctor who asked about my symptoms and gave me the standard antibiotics. Only this wasn't to be a bladder or UTI infection as those of you who have followed my blog posts know. This was going to change my life, my lifestyle and my way of life for the rest of my life.

Interstitial Cystitis or IC is not only a name you can't pronounce it can feel worse than being diagnosed with cancer. It is incurable and there is no one treatment that works for everyone. Basically you will be conducting a science experiment on yourself to find the one thing or combination of things that will get you as symptom free as you can. There will be more tears and frustration than you can imagine, but you are NOT alone. I had the wonderful pleasure of having so many wonderful people reach out to me and tell me about their own journeys, one such person is Elizabeth Musser, an author I reviewed her books for back in 2011 and 2012. Only God knew the connection we would have outside of that many years later. She gave me back hope in that this is NOT the end of my life, but simply a new chapter and that what works for some, doesn't work for everyone.

That there is nothing wrong with challenging your doctor if you feel their level of compassion and understanding to what you're dealing with is sub par. That you can seek help from the internet through your own research, trial and error on yourself and at times, being your own doctor and advocate, because unless you have had this, you don't know what it's like waking up with a horrible Bladder Infection or UTI every day, 24 hours a day with no way it seems to stop it. Doctor's don't want to prescribe pain meds but honestly until you can get to that comfort level, you will take and do almost anything in an effort to re-leave that pain.

So where am I today? I have had some great days between Saturday evening and Sunday. I can't say I am symptom free but between taking 50 mg of Elavil which deals with overactive nerves, to adding Aloe Vera capsules 3 times a day along with giving up coffee in lieu of Marshmallow Root tea, and minimizing my diet of foods that cause pain and those that don't. I am feeling what I could call almost normal. I can feel the sensitivity of the IC, but it is being held back for now. I am off the pryidium which turns your urine orange, and off the pain meds so I can function in ways I wasn't able to before.

I am working with trying to figure out if a high alkaline diet or a low oxalate diet is the best for me, so trying all kinds of food is key to keeping me pain free. The one thing that really stood out for me in talking with Elizabeth is we can go back to our lives prior to that beginning of IC and see where we could have made some changes in our lifestyle that could have prevented this from happening. For me it was dealing with all kinds of stress being generated from my dad, my husband's job, my daughters heart issue and just trying to manage through all of it when everyone wants a piece of you and you try to hard to accommodate everyone and end up short changing yourself. I remember gaining a lot of weight recently and that enabled me to not watch what I was eating and thought I could eat everything and anything I wanted while trying to manage my stress. Now I can see that connection and the light at the end of the tunnel thankfully is no longer a train, but a way out of this darkness of pain and agony.

So today is the beginning of my journey into the light hopefully for quite a while. Thank you to all that have been praying for me, calling me and emailing me. You are God's angels in the flesh, someone I can talk to and cry with. For that, I am forever thankful.

All Is Not Well!!!

So I did it.

I made the decision to get the cystoscopy done today. It is where you go into the urologists office and they take a camera and take a peek at your bladder. I had talked to so many different people about the procedure, did it hurt, what are the expectations afterwards, and after some consideration made the choice to go through with it.

It was the worst decision of my life. When I woke up this morning, my pain scale was already at a 6 moving up, meaning it would be a worse day over yesterday, so I was reconsidering whether I should follow through with the appointment. Then I thought, well what if they find something simple, that justifies all this pain and it can be fixed and the only way they'll know is if I do this test. So I made up my mind to do it.

I went in pajama bottoms because they say you have to get undressed from the waist down so I thought it would be easier on me when it came time to go home. SMART decision by me. There is no way I could have put on jeans after this procedure.

So once I disrobed from the waist down and carefully sat on the padded table, with nothing to cover me but a paper sheet, the nurse came in, had me lie down, and she proceeded to wash me down with a COLD solution and then insert the lidocaine syringe. THAT REALLY HURT. Then she left and said the doctor would be in shortly. I had to ask my husband who came in the room with me, what they just did and he said they inserted a syringe into your urethra and pushed in the lidocaine. It felt like a searing HOT needle and the worst part is the more I sat there waiting to feel numb, it just kept throbbing.

Then enters said doctor, my urologist. Let's just call him Dr. L. He told me the procedure would last about 5 minutes, and then inserted the camera. MY pain scale went from a 6 to an instant 10. I couldn't even focus to watch him do his camera stuff, as I had my eyes closed praying for God to take me now and breathing through the pain as well as I could. I could feel every single time he moved the camera and I wanted to Scream!!!

Then he pulled out the camera and said he was done. As I tried to get up, I asked when I would get the results back and he said about a week. I asked what can I do for the pain I was in now, and he said, the medication he had already prescribed for me should be working. I told him that for the most part it really wasn't on a day like today. I couldn't even stand up straight. I was so doubled over in pain. He asked me to use the restroom while he continued to talk with my husband who was adamant that he give me something.

When I attempted to use the bathroom, it felt like shards of glass and my urine was lemon juice. I was almost in tears. When I came out, Dr. L looked at me, and said, "that wasn't so bad right?" I looked at him and said, "Are you kidding me? My pain scale went from a 6 to a 10." He said I could take AZO for about 2-3 days and that should help along with Tylenol or Advil. I was just in shock.

How could a well meaning doctor not see a patient in physical pain and not do anything? He said he doesn't like to prescribe narcotics because patients abuse them. Then he walked away. I told my husband that I needed to leave, but honestly the hardest thing was trying to walk out of the office with any sense of dignity I had left. I could only manage a partial half standing walking position. Once I was in the car, I immediately got my pryidium out and took the pill, just like AZO only a bit stronger, along with a full NORCO tablet.

My poor husband, there wasn't anything he could do except drive as quickly as possible to get me home so I could self treat and medicate. We also made a decision to find a more suitable doctor. While he may be convenient, he lacks the bedside manners most doctors are missing any longer. I cried all the way home hunched over wishing Jesus would take me right then and there. I couldn't imagine what my weekend would even look like.

Once the medications kicked in along with laying in a fetal position in bed with a hot water bottle between my legs, I felt somewhat better. I have been drinking tons of water to flush all the stuff out of my system and will be taking it easy today.

I am not blaming anyone for their recommendations to bite the bullet and just do it. I made the decision on my own, but oh how I wish I would have waited. This is NOT how I wanted to spend my weekend, drugged up, in bed, and in pain. For now, the pain is about at a 5-6 which is considerably better than when I came home. I had to write this in hopes that those with painful bladder or UTI consider that you might want to opt for being put out if they ask to scope your bladder. If you are already in pain in those areas, there is nothing they can give you that will make this procedure comfortable. The way I described the pain afterwards to my husband is that they made me a new hole to urinate out of. It was that bad a full 10 out of 10.

Prayer for pain relief for me.

To Scope or Not To Scope, That is the question!

Today is a bad day.

What I mean by that is I rate most of my days now by my pain scale and today is a 5. The lowest I have even been able to get it down to is 3, although there are moments in that 3 day where I almost feel normal. Today is 66 days since I've been dealing with the issue of IC or Interstitial Cystitis. It is all the signs and symptoms of a UTI or bladder infection but without the infection part which means that taking things like cranberry juice, cranberry tablets, over the counter meds like AZO doesn't work. AZO is only supposed to used for 2 days at the most and for me, 2 days isn't going to cut it.

So on Friday at 8am I am scheduled for a cystoscopy, which is where you are given something to numb you locally while they insert a camera for a look inside your urethra and bladder. The procedure is supposed to take anywhere from 5 minutes to 15 minutes and there is expected to be some discomfort following that for a day or two.

While it will rule out what it might or might not be, the issue I have is the pain that might accompany me during the procedure and for sure afterwards. Right now I am attempting to manage my lifestyle around 3-5 on my pain scale with taking Elavil 25 mg and taking Marshmallow Root capsules before every meal. If this diagnosis is in fact IC, there is NO cure. Taking things like AZO will NOT help my issue.

If it were only a UTI or simple cystitis than those might be options I can benefit from. I hate looking at my life now and wondering, "Is this as good as it will be?" I am almost out of options for the treatment of IC, besides increasing my dosage of Elavil which may or may not help. I hate that every time I try to talk to my doctor he simply dismisses my issue of dealing with ongoing pain. He simply writes a new prescription and tells me to follow up in about 4 weeks. 4 WEEKS?!!! What about the pain I am dealing with now?

Now don't get me wrong, I don't want pain meds just to be on pain meds forever, and even the one's that do help don't allow me to function in any normal level of being able to move on with my life. Ibuprofen, the doctors choice prescription is a joke. If simply taking that would help, I would not be coming to the doctor. I have taken Advil, Aleve and nothing helps. I have even succumbed to trying the Ibuprofen but NOTHING. Don't get me started on Tramadol, it does nothing. NOT ONE THING for me. That is usually doctor's recommendation # 2. I had to beg my primary to give me a prescription for Norco and I am able to take half of those and keep my pain level way down, but it doesn't allow me to be up and about, it is sitting in a chair or laying down.

Truly I am at a loss at this point between toggling with cancelling everything, postponing it for a later date, but I think well if I am going to postpone it, why not just bite the bullet like someone said and just go for it. Oh how I wish this was treatable in a sense that you take some pills for a couple of weeks and you're back to normal. No pain when you urinate, no acid like pain in your bladder and of course the constant need to feel like you have to go and of course don't.

For now it is a depressing time and I find myself toggling between crying a lot, praying daily, and of course researching anything and everything anyone with IC has tried. Is there anyone out there that has this and can help me? ANYONE?

If so, what has worked?

How are you dealing with your pain and discomfort?

Are there things you are doing that have worked or not?

Advice?

Ups and Downs

Hard to figure out why some days are better than others when managing my IC pain. I try to keep to my approved food list, but there are those moments when it seems like you're doing everything right and nothing seems to help. I am trying to stay positive and most of all, trying to keep my emotions in check. That in itself seems like an impossible task.

To say that IC (Interstitial Cystitis) sufferers have to deal with life style changes is an understatement. You can't just hop of to a random lunch at your favorite restaurant because your food choices have changed. My hubby in hoping to cheer me up offered to do just that, a lunch date to get out of the house. Where does one go when you have IC? No more Mexican food with my favorite people, No more Italian food, no more Pizza and now I really have to scrutinize the ingredient list in what I do order, so we opted to eat at home since it was more safe for me.

It is hard to even think about going anywhere based on this because not only do you have to have a restroom readily available but you also carry water with you everywhere you go along with your approved food choices and let me tell you, there are not many I can have. My beverage choices are water, milk and milk substitutes like Almond Milk and such, eggnog, pear and blueberry juice. That is all my friends. Can't even infuse my water with things I used to love like strawberries and other berries. I even tried Hibiscus Tea yesterday with blueberries, and that left me reeling in pain all night to the point I was considering taking some pain meds.Last night was not a good night.

So what does one have on your typical day, breakfast for me will be bagel and cream cheese with water, followed by lunch which will be a grilled cheese sandwich on wheat bread and cottage cheese, and dinner will be salmon and broccoli. All with my ever full cup of ice water. I do have an appointment with a natural doctor who deals outside of prescriptions drugs but that is not until May 25th. I have a scope scheduled for Friday but trying to decide if I want to do that and deal with pain all weekend long.

From what I have been reading and researching, scopes are generally not scheduled unless prior treatment has failed or there is blood in your urine. For now I guess, I can manage my symptoms as best as I can, and no blood in my urine at this time. I am still waiting for the results of my urine culture I completed yesterday so time will tell. I will call for the results on Thursday, but I know what it will reveal, no infection. So today I pray that God will strengthen me to walk the path He has laid before me today. There will always be something good in all of it so I am thanking Him that He has a plan and a purpose for this. For now, just trying to find ways to enjoy some coffee so I don't have to deal with migraines from caffeine withdrawal and finding ways to get my energy level back.

Please pray that the pain will be manageable today, that my energy levels will increase, and that I will be fully healed from this in God's timing.