Manageable But Still Waiting

Hard to believe just how difficult it is to find a new specialist.

By the time I am finished, I'll be a professional hoop jumper. You know after jumping through so many hoops to find a manageable way to deal with my IC pain. Even that word alone is challenging to say, Interstitial Cystitis. That's why so many people just call it IC.

So now, we are in a waiting game to see what direction, God will have me go. Finding a new specialist with a new medical group, or go back to the one I had before, that treated me horribly, but the doctor I was seeing is no longer there. Makes one wonder why?

So the treatment is manageable. I don't take any pain meds at this time, because they really don't do anything for your pain. I'm managing with natural supplements like Marshmallow Root, (lifesaver), Tumeric, Boswelia Extract along with the prescription for Pyridium for now while I wait. At least I am not curled up in fetal position anymore and still drinking copious amounts of water. But enough of that.

I just finished two wreaths last week from my Friday night LIVE on Facebook as well as another one Sunday and both sold out before I finished. That is always a great feeling, that and 5 custom orders made for a large shipment to the post office yesterday as well as setting up my next business venture which are subscription crates, like you see just about everywhere for everything. Mine are unique one of a kind wreath kits designed so you get enough materials to make your own original. The name of them is Kat's Creative Crates. I listed those yesterday, just 5 for a test run and those sold out within 5 minutes. That meant I had to place another order yesterday for another 10-15 kits. I like shopping for that one special person who is buying a crate to help them make something incredible! Plus it keeps the market from being flooded by look alikes, which I am seeing everywhere.

If you're interested in a custom order, don't hesitate to contact me. I really enjoy making something truly unique for someone.

Update on Kat and Prayer Request

Sorry it has taken me so long to get back to letting you all know about what's been going on with me since my scope. I have had good days where is seems like my IC isn't present at all, and other days where I am back to square one and dealing with pain again. For those of you not familiar with IC or Interstitial Cystitis, the best way I can describe it and sum it all up is like having a bladder or UTI for 24/7 and nothing seems to make it better. Since the chemistry make up is different for everyone, there is no one treatment option that works across the board. I believe a fellow blogger referred to it as a science experiment on myself and that is exactly what it is.

While I try and refrain from being a chronic pill popper, there are things that seem to set me back and thus necessitating the need for a journal that is trying to isolate what things cause an immediate flare up and what causes things to be "Normal" for the day. That is the hard part. I carry what I call my flare up kit which consists of Norco and Pyridium. If it is stress that sets me off, and for those of us diagnosed with IC, know it is a trigger point that will put us out for a couple of days, I have Xanax on hand. In fact, I am scheduled for a follow up with my primary care doctor this afternoon to discuss treatment options and prescriptions that are helping. That being said, today is a level 4.5 day. Not sure what is causing the flare up that began yesterday, but I know that standing for long periods of time, definitely make it worse.

Today will be a fluid day, nothing more if I can handle it to give my angry bladder some time to heal a bit. Lots of Aloe Vera and Marshmallow Root Tea too and tons of water. I know if I let my water intake slip, it causes immediately flare ups. So I am never without at least 32 ounces of water with me at all times. I guess that can be a good thing too. So that is my update on me and now for my prayer request.

I often wondered what I would do if my Pastor at church wasn't able to preach any longer. I have learned so much under his teaching in just over 2 years than I have since I became a believer. The man is a spiritual powerhouse and true advocate of God's Word. He conducts yearly trips to Israel and East Coast Founding Father trips to discuss how are nation is founded upon godly principals and is at the for front of everything dealing with his community in Chino Hills, California or even this state or nation. He is a true target for the enemy. I will post his update from Facebook to put things in perspective in his own words.

"An update on what’s going on with me.

As many of you know, as I have mentioned it several times to the flock at Chino Hills over the past year, that for nearly two years I have been battling an increasing onset of insomnia, which has now deepened into a serious inability to sleep. The once solid sleep each night that I’ve enjoyed all my life has now been reduced to about three 45-60 minute intervals within a 24-hour period.

For this, I have been under the care of numerous doctors, wellness specialists, holistic practioners and I am now currently awaiting admittance to a specialist.

Up until now and by God’s amazing grace, I have been able to maintain my teaching schedule, but at this time that is no longer possible. And so we have cancelled all my previous speaking commitments including conferences and international appointments.

I ask for your prayers as Lisa and I trust the Lord for the best possible treatment against this debilitating illness.

As per direction, I am doing my utmost best to rest, to follow the doctor(s) orders and to get renewed by His grace and the love of my dear family.

As soon as I am able I will return to the calling of my life, which is to preach and teach His wonderful Word, His unfailing Word and His healing Word.

Until then, I have commissioned my assistant pastors to man the helm and teach the word, which I have full confidence they will do.

"Now may the God of peace who brought up our Lord Jesus from the dead, that great Shepherd of the sheep, through the blood of the everlasting covenant, make you complete in every good work to do His will, working in you what is well pleasing in His sight, through Jesus Christ, to whom be glory forever and ever. Amen." – Hebrews 13:20-21"

This wonderful man of God, Jack Hibbs, needs prayer. Prayer for healing, and for God's will in whatever the next chapter in his life will be. I, for one, can't imagine Calvary Chapel Chino Hills not under the leadership and teaching of Jack Hibbs. But I have to, in the event God calls him to do other things for His glory. I find myself struggling like a lost sheep in search of a shepherd. His teachings were always relevant to where we are at in the world today regarding anything to do with God's Word and now it seems as if that voice is silent for now. All I know if for now, I will pray every single day for God's will in Jack's life. I hope he will be able to return to teaching in some degree but I also know God's got this under his control and moving along in His timing. So if you can find it in your heart to add him to your prayer lists, I know he would appreciate it as well as filling his life with prayer covering. Is this a spiritual attack? I don't know. But I am praying for restoration of his health and returning to teaching. For now, I will immerse myself in God's Word and listen to his recorded sermons on his website.  I will be forever grateful I got to meet him, talk with him, have him pray for my family and now it is my turn to return the favor.

Will you please add Jack Hibbs, Pastor of Calvary Chapel Chino Hills to your prayer list?!!

Such A Hassle Just to Make A Buck

Here it is Day 4 of feeling so much better. Today is better than yesterday with just a trace of symptoms of IC. I am enjoying a cup of coffee this morning since not having any for the last 2 days and switching it out for Marshmallow Root Tea. I've been waking up with a headache the last two mornings and wanted to see how my bladder would handle a bit of coffee. So far so good.

I hate my urologist. I think he is strictly doing his job for the money and making people jump through hoops just to get their test results. When he did my scope on Friday, all he provided to me at that time, was that my bladder was pale. You would think if your urologist conducted said test, he would tell you what is going on at that time. I was in so much pain, I couldn't think straight to ask him anything since I was focused on dealing with that, and my husband was arguing him over why he refused to prescribe something for the pain. When I asked the nurse how I could find out the results of the test, she told me within a week. Really?

After yesterday I told my husband no more.

I'm going to schedule one final appointment to pick up the results of my scope and hand them off to my primary care doctor who was the first to diagnose me with IC. He was the only doctor to also prescribe any pain medication for me, which was my saving grace on Friday. Now when I called to schedule a follow up, the earliest I can see him is April 25th. My current prescription of Elavil is scheduled to run out on Sunday the 23rd of April. I asked his nurse if I can get the prescription refilled so I don't have to be in pain while I wait for the appointment. She told me, the doctor won't refill prescriptions unless he has seen you.

I explained the situation and the earliest appointment would put me two days without medication. Her response was less than favorable, but I pushed her to at least ask. After all it was his suggestion that I double up on the medication just to get me through the pain of Friday's procedure and I can't see how if the medication is working, why he would want to make me wait just to have it filled.

Honestly. Doesn't it seem like this man is out just to make more money. His office visits are $300.00 which is what he is charging our insurance. So now I have to plan another visit, just so he can tell me, my results are normal and that he will refill my script? If I don't hear back from him by Friday, I'll have to see how I can push my primary to refill my scripts instead and forgo dealing with Dr. Greed instead.

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.

Decision Made

Well to say that yesterday was a bad day is 100% true if you are discussing my level of pain. I was a solid 7 most of the day and at some point I relented to take a half of a Norco because it usually eases the pain. It took the edge of but not enough to where I could function normally, or as well as I can under these circumstances.

I hate this part of my life.

I know God will bring glory to His name in all of these much like the apostle Paul begged three times for his issue to be taken from him and God told him no in the nicest possible way. In 2 Corinthians 12:9-10, " But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."

Hard to imagine gaining strength through this but it takes all that I have not to lash out to anyone who is close to me, because I don't do pain well. I guess let me rephrase that, I can tolerate pain up to a point and then it becomes too much for me and I get frustrated because there is nothing I can do to find the slightest bit of comfort in all of this. 

I can't schedule a hair appointment because I'm not sure if it will be a good day, pain level 3, or a bad day pain level 7 and above. So my life in a nutshell has been staying within 10-15 minutes from home. Just taking a walk through the grocery store is horrible. I hate the way I feel and as I look around me, I can't be but envious of those who aren't dealing with this. A silent pain. One that shows no outward signs of what is happening on the inside. 

Last night I tried everything, from hot water bottles, Xanax, anti-inflammatories, pain meds, to all the comfort foods that is suppose to calm the irritation. I finally gave up by 8pm and opted to double my dose of Elavil based on people who have flare ups will double their dose and in the morning will feel much better. 

This morning I did feel a bit better, but that is the thing, mornings are generally good for me, but by the end of the day I am done. Like stick a fork in me done. So after some consideration and talking with family and friends I am going forward with the scope. I did get my urine culture results back from Monday and that is NO infection. I think I already knew it would rule that one out. Seeing as I have had 7 of them with all the same results over the last 67 days. I need some answers that I can't find right now. I would hate to think that it might be something that they can treat and I can move forward on all this and not look back. 

The scope won't really confirm IC, but it will rule out the things its not, like stones, ulcers, and other maladies of the bladder and urethra, but I need more answers than I have right now and it will also give me time to discuss pain options with my doctor to see if there is something I can take that will curb the pain level NOW, while I'm waiting for the Elavil to take effect. For some it happens right away and for others it happens over time. I've only been on it for a week. 

Thank you to those that I was able to chat with via Facebook messenger or the phone that have given me things to consider about having this done. At least with it out of the way, managing treatment now becomes the one priority to deal with instead of merely guessing about what it could be. 

I could definitely use prayer tomorrow. First of all, always, that God removes all traces of pain and heals whatever this is. Secondly, that I will have peace during the procedure and no pain. Finally, that in this process I will have a definitive answer and hopefully one that allows it to be treated and for me to move forward without having to deal with this.  

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. 

No Cure!

For those that follow me on social media, via Facebook, Twitter or Instagram, you already know most of my story, but for those that simply follow me via my blog, this may be new to you. When I became interested in blogging it was to keep an online journal of what was going on in my life in hopes I could look back on it and be encouraged or to see answers to prayers in what was going on in my life and perhaps find common ground with others in the process. I am going back to this because of what I am now being diagnosed with and it's called "Interstitial Cystitis" or IC for short.

What is it? Basically summed up in a nutshell is all the symptoms of your traditional Urinary Tract Infection or Bladder Infection, minus the infection part. The problem being is that treatment is different for everyone because the DNA make up and what you eat and how your body processes that is different. From a science point of view it is cracks in the bladder that allow urine to irritate the bladder wall and thus cause the symptoms of what duplicated a UTI. There is no infection.

I've been at it trying to figure out what has been going on since February 6, 2017. For almost 4 months despite all the negative urine cultures they ran on me, the doctors kept thinking it was a UTI or Bladder Infection, so I was given 4 different types of antibiotics, from Nitrofurtin, to Cipro, to Bactrim to Augmentin. Nothing worked. And it shouldn't have because there was no infection, only pain and urgency to urinate all the time. Bathrooms were my newest friends.

I did find some relief taking Pyridium, the stuff that makes your urine bright orange and stains everything. But eventually that stopped helping as much as first. So I tried everything in my medicine cabinet, researching the internet for all kinds of "what could it be?" advice and while they all pointed to a number of things, it would now begin a process of working with both my primary doctor and my urologist to pin point the cause for the next month going from ultrasounds, CT Scans and more eliminating kidney and bladder stones, and everything under the sun all while prescribing me meds for over active bladder in any attempt to get my symptoms under control. These haven't worked because it wasn't over active bladder and all they did was make things worse.

Now it has come up with IC, which unfortunately has no cure. My biggest challenge on any day is not to get depressed by it because it has drastically altered my life. Pain is also ever present, it never goes away. I found that by eliminating all foods that are spicy, sour, citrus, coffee, chocolate, garlic, onions and the like, I am more comfortable. The best days are a pain scale of about 3. I am taking marshmallow root capsules because upon research, most IC sufferers found relief by taking them as well as Elavil 25 mg that my urologist has me taking at night. This is how I went from a 10 on the pain scale to now finding relief in a 3. I am praying for 0, but for now I will take what I can get.

At first, I hated this diagnosis because of what this would mean for me, and also my family. Trips now have to have restroom access at all times. You just never know when its time. It is also figuring out which foods trigger pain after eating them, and adding them to the no eat list. The biggest challenge has been trying to figure out how to eliminate all the prescription meds and go completely natural, but for now it is still one big science experiment. Along the way I have been encouraged by those who also have it and have been sharing what works for them and how things have helped. My quality of life right now is pretty depressing since there is nothing anyone can do to help me. It remains a journey I take alone right now, but I pray to Jesus every day that today, just today will be a better day.

I would love to hear from you if you also suffer from IC, and please email me at Stevenkat27@verizon.net and I'd love to hear you story and what has worked for you. Please keep me in your prayers for a complete healing and at least the strength to get through one day at a time, and to keep depression behind me.