IC My New Life

Since I have recently been diagnosed with Crohn’s disease, I began taking a new medication. I started on Budesonide in December. It was a few days before Christmas and my husband was going to pick up my prescription for me. I looked online to see how much it was and found out it was going to be $226.

I told him not to get it that I could just wait. I was very upset that it cost so much and I was feeling bad too. He said that he was going to go ahead and pick it up and that we would just have to cut back on Christmas for our daughter. That, of course, upset me even more. I begged him not to get it, but he did anyway.

I started taking it and after a few weeks, I started feeling a little more“human” again. I wasn’t nauseated all the time and not having as much diarrhea. Then in January when it was time for a refill my regular pharmacy told me that it would be $1,100.00 this month. I had completely forgotten about the new year…meaning a new deductible

🙁

I called around to find the cheapest, local cash price. She told me it would $900 if I paid cash or it would be $1,100 with my insurance. I said are you sure that you filed my insurance? Would you please ask someone else there to double check. She said she would and called me back and told me that the prices were correct. Yes, that’s correct. It was cheaper without my insurance.

I was about to learn a lesson in Insurance 101. I called my insurance company to make sure that she had indeed filed the claim. He said yes and that the $1,100 was the “negotiated price” from my insurance company. In other words, I felt like I was being ripped off, to say the least.

I called the manufacturer since I have heard several commercials that say the manufacturer may be able to help. This is an example: “If you can’t afford your medicine, AstraZeneca may be able to help.” When I called the manufacturer they said: “We can’t help you with that medication.”

In desperation, I called my doctor’s office and the most helpful, young lady answered the phone. When I explained my situation she stated that one of her co-workers has Crohn’s and that she uses canadadrugs.com. I was not convinced. I was concerned about ordering my medication online.

Then I talked to the lady that has Crohn’s and she said that she always uses them and so do some of their patients. She said that they even offer more of a discount if you order more than a month at a time. I was now persuaded to do my “drug deal” online.

I called and asked about the pricing and was told that it would be $89 plus $10 shipping!! Thank the Lord! That price is a lot more reasonable! There was one problem it would take three weeks for the shipping. I also had to fill out some paperwork, send a voided check, and get another prescription from the doctor.

It was February 1st when I finally placed the order. It was near the end of February before I started taking the medication again. I was starting again and it took a few weeks for me to notice a change. However, this time the improvement was not as apparent as it was the first time.

I feel like I am still struggling a lot. I have days when my stomach cramps all day. I have had nights when I have to run to the bathroom several times during the night. I have days that I am in a Crohn’s flare and push myself and still go to work only to pay for it for the next several days.

After a recent visit to my gastroenterologist, I am considering taking Humira injections. I told him I would like to give what I am taking now at least another month. There are a lot possible side effects from Humira. My doctor said that I needed to look at the quality of life versus side effects. I agree and I have come to to the same conclusion with other medications that I have tried.

Once such medication was Elmiron that I was taking for my bladder disease (Interstitial Cystitis.) I took it for several months, but I was nauseated, couldn’t sleep or eat most all of the time. I felt like I was losing my mind.  I finally decided it was not worth it for me and I quit taking it. Even though it is the only FDA medication approved for treating my bladder disease.

I suffer from symptoms of my bladder disease every day but it is not the issue that is screaming the loudest in my body now. For months on end I will suffer from flares (increased symptoms) of my bladder issues and then I may go into remission for a few months.

As I continue along this journey I never know when I receive “Another Life Sentence.”  But one thing I can always count on is that when I am facing challenging times it is an opportunity for me to trust the Lord.  If I look at my path and try to handle it myself, I will certainly face anxiety and depression.  The best way I can face each new day is to stay in close communication with the Lord.  My thoughts and spoken words should reflect my trust in the Lord.  I know He can keep me in perfect peace.

I was very determined to figure out what was going on with my digestive issues. As I told you in my last post I have had stomach pain, diarrhea, nausea and weakness for over twenty years. My symptoms were getting worse. I also started having stomach cramps and more bad days than good days.

I already had a colonoscopy. The next procedure on the list was an upper endoscopy. Compared to the colonoscopy the endoscopy was a walk in the park. I’m glad I decided to have the worst of the two first. My upper endoscopy went well. It did show that I have acid reflux.  So add that to my symptom list; I have heartburn most nights now.

The next recommended procedure was the Pill Cam. This is a tiny camera that you swallow and it takes thousands of pictures of your small intestine. It was a painless procedure. I went in one morning and swallowed the pill, they placed a small strap around my waist that holds a recorder and the photo shoot began.

Later that afternoon I returned to the doctor’s office to turn in the recorder and belt. The camera comes out….um, naturally.

Five days before Christmas my Gastroenterologist called and left a message on my answering machine with the results from the Pill Cam test. He informs me that I have ulcers in my ileum or small intestine. He states that two things cause ulcers in this area; taking NSAIDs such as Aleve and Ibuprofen or Crohn’s disease. He knew that I don’t take NSAIDs so he said that he is worried that I have Crohn’s disease.

I played the message over and over. I listened closely to every word that he said. But I decided to put this news in the back of my mind and enjoy my Christmas holiday as much as possible.

In a way I was relieved. I finally have answers after all these years, but on the other hand, it was not the news I wanted to hear. No one wants to be told that they have yet another chronic disease.  

*Crohn’s disease is a rare, chronic inflammatory bowel disease. There is no cure for Crohn’s and it sometimes causes life-threatening complications. Crohn’s disease causes abdominal pain, diarrhea, weight loss, anemia, and fatigue. Some people may be symptom-free most of their lives, while others can have severe chronic symptoms that never go away…Another Life Sentence for me, Another rare disease that most people don’t understand, Another auto-immune disease, Another disease with no cure to add to the list of others that I already have such as Fibromyalgia, and Interstitial Cystitis.

The good news is that I have had Crohn’s for over twenty years and now my doctor will know how to treat it. For the last five years, I was convinced that I had Irritable Bowel Syndrome (IBS).   Another doctor suggested it based on my symptoms. At first, I didn’t agree with him but my symptoms seem to fit. The symptoms of IBS and Crohn’s can be very similar.

My Gastroenterologist immediately started me on an antispasmodic. It helps reduce the symptoms of stomach cramping. He also started me on Budesonide.   It decreases symptoms such as pain and diarrhea. Budesonide is an anti-inflammatory drug.

Within a few weeks, I started feeling better. I wasn’t nauseated all the time, the stomach cramping was reduced and I rarely had any diarrhea. I felt somewhat human-like again. It was a great feeling!

I am thankful that I have answers to a question that affects my life daily.  I am thankful because I know that the Lord will be beside me, guiding me no matter what is going on in my life.  I also know that my struggles make me realize just how strong I am.

Stay tuned to find out why this feeling of relief only lasted a few weeks…

https://www.crohnsandcolitis.com/crohns/disease-symptoms

Many of you have not heard from me in quite some time. I have really been struggling with my digestive issues. Every time I would eat I would get nauseated. I started having more digestive flares and they became more intense.

The flares would start with stomach cramping, pain, and nausea. Many times they would result in diarrhea, extreme nausea, weakness. Since I was having more bad days than good days I decided to pursue answers to this long-standing battle that has been going on in my body for more than twenty years.

I was referred to a new Gastroenterologist in November. Jokingly, I told everyone before the appointment that the first thing he would want to do is a *colonoscopy. He lived up to my expectations. Although I had one about four years ago, considering my family history, and my symptoms, I agreed that it was a good idea.

The preparation for the procedure was devastating on my already weak and frail body. The “cleansing procedure,” along with the complete elimination of food for several hours, was almost more than I could handle. After I spent the evening in the bathroom, I woke up the next day to face battle again. It was hard to believe that there was more “cleansing” to do.

My very supportive husband drove me to the doctor’s office. I felt so bad I didn’t do anything to my hair or makeup. I really have to be feeling bad for me to not at least comb my hair. I just put on some sunglasses and tried to be incognito.

I was so drained that I had trouble answering the questions that the nurses asked me, walking, and even following simple instructions…put it this way…when the nurse came back into the room to prepare me for the procedure I still had on my underwear, lol. She plainly told me to remove them. I told you I was having a very difficult time.

We laughed and then she asked the Nurse Anesthetist to come in and give me something to help me relax. He told me it was going to be Propofol. You may remember this was the drug that Michael Jackson used to help him sleep. When you struggle with insomnia, it can make you do some desperate things. I can understand why he wanted it. The Anesthetist asked me if I had any more questions.  I said,“Yes, do you make house calls?” I also battle with being unable to get to sleep and stay asleep. But of course I was only joking because they say sleep with anesthesia is not real sleep…hmm, that’s what they say.

After the procedure I was fine and the doctor said everything looked good. Praise the Lord I do not have colon cancer. I am very thankful for this because as I mentioned there is a family history. My grandmother died of colon cancer. The question remains what do I have??!

For more information on colonoscopies:http://www.cancer.org/cancer/colon-rectal-cancer/early-detection/acs-recommendations.html

Recently I had a week that was very difficult. I dealt with an IBS flare every day that week and Fibromyalgia flares for three days. It was getting to me…I was struggling mentally.

My doctor appointment was scheduled for Wednesday. I was in a Fibromyalgia flare but decided to go anyway. Big mistake! Everything irritated me even the teenage girls in the waiting area who were talking loudly and being, well, like teenage girls…lots of drama.

Then I was taken to a “holding area” and greeted….no, not greeted at all, by a nurse who then took me to a small open room and proceeded to ask me questions for all to hear about my medications and my surgery history, etc. I thought there was some kind of privacy thing now…um, guess not! If I had the energy and spunk that I have when I feel at least a little bit better I would have asked her about talking to me privately. Then I was taken to another “holding area” where I was able to hear an another nurse complain about another patient. Not what any patient wants to hear and not what I wanted to hear at all, especially since I felt so bad.

Things were not off to a good start but it was the visit with the doctor that upset me the most. I felt like I was more of a burden to him than anything. Like all of my crazy conditions were frustrating him and he didn’t want to deal with me. Just imagine how I feel. I have to live with these conditions every day of my life. I can’t send me away after humiliating me and go on to the next person. He even said in a very unpleasant tone “I can’t fix all of your issues.”

I realize that he can’t, I can’t, nor can a team of doctors fix all of my issues. I understand that. Most of the time I mainly just want someone to listen to me with compassion and make educated suggestions. Or just listen to me, let me cry and just be there for me. If I am paying you to listen to me, please at least be compassionate and not make me feel worse.

On Friday I talked to my sister about some of my struggles and she listened, made suggestions, and just showed me love. I was starting to see the light at the end of a long, hard week. I still didn’t feel good physically but mentally I was relieved just to be able to talk to someone who had empathy for me.

Later that day my husband called me and we made plans to get eat supper after I worked a couple of hours. We met at the restaurant and things were off to a good start. I was enjoying his company and we laughed along with the server as he had to bring us our drinks three times before they tasted as they should.

Then all of the sudden, “I was double booked.” You know from the Viberzi commercial…

I looked at my husband with genuine sorrow and said a phrase he has heard over and over…”I am sick.” He knows that means I need to go home asap. I started popping Zofran for my nausea and Loperamide Hydrochloride to hopefully prevent an IBS attack. My husband thankfully went to the server and said something to the effect of, “Bag it up.”

Adding to the horrible feeling of an IBS attack, I felt defeat for myself, and heartfelt disappointment for my husband. I looked at him and said, “I am sorry.” Another phrase that he hears repeatedly from me due to my many illnesses. I felt guilty…one of many of my feelings with chronic pain, etc.

But I know that I have chronic issues for a reason. I know that the only one that can heal me is my Father and Savior. And I know at least for now, I am double booked, with chronic pain, and a mission to encourage others.

I am thankful for a husband that takes it in stride when after a long week of work, his well deserved steak dinner has to be boxed up and taken home to eat.  I am also thankful that my Heavenly Father has plans for me no matter how messed up my “date night” may turn out to be.

As I drove myself home I had an overwhelming sense of sorrow and depression.  I turned the radio on and heard the exact song I needed to hear at the exact time I needed to hear it.  The song is called “Thy Will.”  As she sang, I could relate to every single word as if the song was written for me on that day.  I had a good cry but I also took to heart the words that were being so beautifully and emotionally sang.  I also remembered that I am going through all my struggles for a reason and the most important thing is that God’s will is done in my life.

My life is like a box of chocolates, I never know what I’m gonna get. One morning, recently, I woke up feeling refreshed (a very rare feeling for me) because I had slept well the night before (again very rare). I felt good for most of the day despite the fact that my Irritable Bowel Syndrome (IBS) has flared and I feel nauseated. But my spirits were good.

From one of my favorite movies, “Forrest Gump.”

The next day I woke up exhausted and in pain. I was in a Fibromyalgia flare and…an IBS attack to go along with it and as always my trusty friend, chronic sciatica. The Fibromyalgia made me feel like I had a fever all day. My whole body ached and I had very little energy.  The IBS made me weak and nauseated. Lately, I have been getting used to that feeling because I have it most days. But the triple team effect of these three debilitating conditions really made me feel lousy.

I worked a couple of hours and then came home. My daughter and her husband came over for a short visit. I have found that the adrenaline you receive from looking forward to something can give you the strength to do much more than you thought you could accomplish while you are ailing physically. I still felt lousy when they came over but I enjoyed visiting with them.

My sweet husband stopped at two different restaurant’s and picked up our supper. My daughter and son-n-law are picky eaters and they wanted to eat from one certain restaurant and because of my diet restrictions (and I’m I picky eater too)  I wanted another restaurant. My husband accommodated all of us.

After we ate, my daughter wanted to pet one of our cats. We had this cat, Boo Boo when Miranda was still living at home. Miranda knows that Boo has always been very particular about when and how she wants to be petted. I told Miranda that she needed to be in her zone in order to pet her. So we followed the Boo into the bedroom. I told her to lie down on the bed with me and I showed her how to pet Boo Boo the way that she liked it best.

It was good for me to be able to lie down and rest, and it was great to be able to talk to my daughter and connect with her in this way. Even though I felt bad I found the strength to talk to her and we bonded while we talked about my cats, her cat, and just everyday life.

Even though it would have been easier to stay in bed all day that day I know that sometimes I need to push myself to get the most out of life. Granted there are those days that I just need to stay in bed to rest my body so that I can give the most to my family and friends for the days ahead. But there are other days that I need to find my inner strength and give it my all.

My life IS like a box of chocolates…it won’t last forever but I try to make the most out of each piece.

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It was Memorial Day so I had the day off from work. I had told my husband that I wanted to plan something special to do. But when the day arrived I had nothing planned.

The day before I had gone to church in the morning.  I had slept well the night before and I was completely worn out. I found out that later that same day that I needed to lead my Bible study group since the planned leader was not feeling well. So after church I went home to prepare my notes. I only had a few hours before I needed to be ready.

I know the only way I had enough energy to lead was the Holy Spirit was giving me strength. Otherwise I would have failed from the beginning. We had a great meeting. I could feel the Holy Spirit leading me.  I also felt encouragement from the input of others. I was very tired afterward. Again, that night I didn’t sleep well.

My daughter asked me the next morning if I wanted to go visit my mother-in-law. At first I said no, I’m too tired. I had over done it the day before. All I wanted to do was rest. However, after I was up and stirring around the house for a short while. I decided to go for it…very unlike me.

It usually takes me a while to get ready, get dressed and be prepared to go anywhere. On this day I just went with the flow. I asked my daughter to come and pick me up at my house. I dressed, and pulled my hair up in a ponytail and we hit the road.

We went and visited, did a few chores around her house and soaked up the sun by her swimming pool. I haven’t been in a swimming pool since I was diagnosed with *Interstitial Cystitis (IC). The fear of the way the chemicals may react in my bladder has kept me away from any pool encounters.

Lately I have been wanting to test the waters…literally! I thought this would be a good opportunity. I put on my swimsuit and took the plunge. The water was a little cool at first but it did not take me long to adjust. My main goals while in there were to see how my body reacted and to work on cleaning the pool.

I didn’t stay in long but I was able to accomplish my goals. So far my bladder has not been screaming. This is a good sign. Please take note that this is not a chlorine pool and I know that I was really taking a chance. But for some reason this was one of those rare occasions where I decided to go with the flow…pun intended.

I am usually a very cautious, careful person who does not take many risks. But I saw this day as an opportunity to spend time with my daughter, my mother-in-law and do something fun! As someone who has multiple medical issues it would have been easier to stay home, rest and relax. I do it all the time.

Most of the the time if I am going anywhere I have to psyche myself out for hours or sometimes days in advance. I conserve energy just so I will have enough strength to attend any event or even go buy groceries or go to work. It is a process for me.

This day was different and I got out of the coziness of what I do day in and day out. This day was about an experience. It was about making memories with loved ones.

I told a co-worker that I think the Lord wants us to stretch ourselves. I believe this is one way we grow and depend on Him more.

Is God calling you to do something like teach a Sunday School class or speak up about something that is happening in your community that you think is not pleasing to God? These things can be scary and uncomfortable. But the Lord is beside you and His spirit is within you, making these seemingly impossible tasks possible.

I certainly feel incompetent leading a group of my peers in Bible Study.  Most of them know waaay more about the Bible than I ever will.  But it wasn’t about who knows the most it was about who was willing to follow the nudging of the Holy Spirit when the preacher asked who has an interest in leading a Small Group Bible Study?

You can stay where you are and not do anything different or you can take a chance and go with the flow.

*Interstitial cystitis (in-ter-stish-uhl sĭ-stī’tĭs), or as we call it, IC, is a bladder condition that usually consists of multiple symptoms. Most IC patients have recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, and urinary frequency (needing to go often) and urgency (feeling a strong need to go). – See more at: http://www.ichelp.org

Twelve years ago my daughter picked him out at the animal shelter as a kitten. He would turn out to be the family’s favorite cat. She named him Tigger. I called him My Tigger.

All of my family became attached to Tigger. He grew to be a large orange tabby who loved to be held and petted. He had a loud, soothing purr-fect purr. He even liked to cuddle.

When my daughter moved out, Tigger stayed with us. I grew very close to him even though I have other cats. He was a constant companion through my difficult nights. When I was feeling bad he would always jump up on the bed, purring away, waiting to be petted. I hugged and cuddled him and he comforted me.

Tigger passed away last week. I noticed a spot on his hind leg that looked like he had been bit. He was eating and seemed fine. He later crawled up on my bed with one of my other cats. After about an hour he let out a big groan. I checked on him and thought he was just sick. I went into the kitchen to find something to give him some water and went right back into the room he was unresponsive.

I was crying so much and was so upset that I couldn’t check his breathing or heartbeat. I was panicked. I called my veterinarian’s office. I talked with the very consoling receptionist named Cindy. I told her what happened and that I didn’t want to give up on him if he was still alive. She said I would know if he was alive or not. She kept asking me if I had someone who I could call that would come help me. I said that I could call my husband.

Since I was not able to reach my husband I decided to call my sweet sister. Yes, the same caring sister who a few weeks ago had driven me out-of-town to get a bladder instillation because I was in so much pain from an *IC flare.

She came over and helped me with My Tigger. First she asked me what happened and then she checked on him. She asked if I had an old towel. I brought her a towel and she placed him on it and gently rolled him over to check his other side. I told her the story of how my daughter picked him out and raised him from a little kitten. I told her that I was not ready to let him go.

She listened and we continued to pet him. A few minutes later she asked if I had I box. She placed him in the shallow box, and took him into another room, and closed the door. She stayed with me and we talked for a little while. It was exactly what I needed. I needed my sister who is a fellow animal lover to just be there for me and calm me down.

One of my last memories of My Tigger happened earlier that day. I was brushing him while he was eating and he plopped down, quit eating, and enjoyed me brushing him. I stopped and he came back to me wanting more attention and love…that was the way My Tigger was…always wanting more love…always giving love!

I also remember the night before when I was having a difficult, pain night he was right there by my side purring and snuggling with me. I am so grateful that I have all of these fond memories of him and that he didn’t have to suffer. I have twelve years of good memories of My Tigger…My Purr-fect Friend.

*WHAT IS AN IC FLARE?

IC flares are not the same for everyone. Nearly 750 people responded to a 2009 ICA Quick Poll asking them to define an IC flare. Definitions included:

• Period of extreme pain with increased urinary frequency/urgency across several days or weeks (19%).
• Sudden increased intensity of symptoms (12%).
• Dramatic increase in IC symptoms across several hours (7%).
• Worsening of symptoms from baseline (5%).
• Subtle worsening of symptoms (4%).
• Over half (52%) of the IC patients surveyed felt that all of the above definitions defined an IC flare.

My third Interstitial Cystitis (IC) flare of the year continued for a month. My sister and I again made the trip over an hour away to Spartanburg Urology Center so that I could get another bladder instillation. (See blog post Wizard Of Oz-Like for more details on the first trip https://icmynewlife.com/wizard-of-oz-like/)

This time we took my Mama with us. I will never forget on the way home as I lay in the back seat my sister drove and my Mama read funny, short stories from the Reader’s Digest magazine. Mama would get so tickled as she was reading the stories that we couldn’t help but share in her laughter.

The next week  when I needed an instillation I was able to get an appointment with my local doctor. The appointment was at 8:40 am…yes, am! Not my favorite time for an appointment but it was the only one available for that week so I took it.

I explained to him how I had tried to get an appointment with him for the last two weeks but ended up going out-of-town instead, because he was so booked up. He said that anytime his staff tells me that to “Page him at the hospital” and he will get the Mid-Wife Nurse to give me the instillation. I told him thank you so much that means a lot to me at as the tears streamed down my face.

This doctor understands IC and knows that I am in extreme amount of pain especially when I am in an IC flare. He always takes the time to listen to me and answer all my questions. I am so thankful that the Lord has blessed me with a compassionate IC doctor.

The medicine (cocktail) in the instillation he gave me makes my symptoms worse before they get better. On the drive home I had extreme burning in my bladder and my lower regions. I mostly thought about what the doctor had said…He had me at “Page him at the hospital.”  (You know I changed the popular expression below)

By the time I walked in the door when I got home I was in full melt down mode. My husband thought I was upset and said what did he say to you? I explained that I was relieved and that was why I was crying. My husband seemed confused…women are complicated to say the least. Especially a menopausal one, with chronic pain that’s in an IC flare. I said that this doctor understands IC and it means so much to me to have someone who understands a little bit of what I am going through.

I held the medicine as long as I could. When I voided I noticed that there was blood too. I knew from past experience that this was all right…painful but all right.

Throughout the day I had both frequency and urgency and the burning continued all day long. I stayed in bed most of the day and rested. I was miserable but I knew that in the long run these treatments would help make me feel better.

The following week I went back for another instillation. This time I remembered to take some Pyridium first to help ease the burning. This instillation did not hurt as bad. I even went to the bank for the office before I headed home to rest.

So far this year has been filled with lots of pain and my struggles have been many but I know that the Lord is strong enough to handle all of this for me. I have to make a conscious decision everyday when I wake up to “cast my cares” on Him. I know that the Lord is always beside me leading me and He listens to me. The Lord had me at “It is Finished.”

I have had this song on my heart all day. It explains how the Lord is the anchor of my HOPE and the only one in control. I hope you will listen to the song and tell me what you think.

I took a short walk. I felt like I was a bear coming out of hibernation from the winter. I have felt bad for so long that I haven’t walked very much lately. Compound that with the fact that cold weather makes my Interstitial Cystitis (IC) and Fibromyalgia, etc. pain symptoms worse. I have clung to the comforts of my home for most of the last couple of months.

As I walked along in our front yard I gazed at the trees my husband planted a few months ago with much anticipation of the leaves that will hopefully be visible in just a few weeks. I heard a sound in the field next to our house that I thought was one of our cats, it was a bird. I enjoy seeing and hearing birds. There were bird sounds all around me. Even the flapping wings of a bird in flight were a welcome sound to my nature-deprived ears.

The calendar has next Sunday marked as the first day of Spring but for me it was today. It is the start of new beginnings. I began to ponder in my mind if my dream of moving to a place that stays warm all year round would have the same excitement that I felt today as I took my short journey in the delight of my first day of Spring.

The sun gently warmed my face combined with a cool, gentle breeze blowing through my hair. As I approached the front door of my house I was greeted by a kitty who anxiously awaited my return. I felt so thankful to God for all his blessings in my life. I was so thankful that I felt good enough to walk today and enjoy my first day of Spring!

Recently I was in a Interstitial Cystitis (IC) flare* again. Number three of the year. They have been happening about every three weeks. Until now I have been able to get them under control within a few days. This one was determined to take over my body and stay.

Since I was in horrible pain all the time I called my IC doctor for a bladder instillation. The soonest appointment available was almost a week away. In the condition I was in I knew I would not be able to work. So I needed something quickly. I called the office of the doctor that diagnosed me. His office is over an hour away but I was desperate. When I asked the person that answered the phone if he had a certain cocktail for the instillation, you would have thought I was speaking another language by the way she reacted. Well, I guess I am for those who do not have IC. A cocktail is the ingredients or medications that they insert directly into the bladder via catheter. They said it would take a week or so to work me in as a new patient. It has been four years since I have seen him.

Out of urgency (pun intended) I called the Urology Center that I used to go to before my Urologist left town to start his own practice in another state. Oh how I wish he was still there. He understood the pain of IC and he was a very good at encouraging me!

When I called and stated that I needed a bladder instillation the receptionist said do you have IC? She at least seemed to understand a little bit about what I have. The more I talked to her the more she seemed to know. I had tears in my eyes as I talked to her.

When you have chronic pain and illnesses it is life changing. But when you have a chronic illness that no one has ever heard of it brings with it an entirely different set of challenges of its’ own. So when someone understands it can be emotionally overwhelming especially when you are in a lot of pain and a  flare.

I made an appointment for the next morning. Mornings are difficult for me and I try not to do make any appointments that end in “am.” but I really wanted relief. The office is over an hour away from my house so I needed a driver. My husband was working so I called my wonderful sister. She eagerly agreed to make the trip in hopes of relief for her baby sister.

We left town about 9:15 and headed through a small town then onto the interstate. I sat up front but reclined my seat as much as possible to take some of the pressure off my bladder. As we were about ten miles out from our destination the sky was gray and the clouds were very dark and heavy on the bottom. There was sunlight shining behind the clouds onto the barren, gray, winter trees.

I told my sister that it looked very “Wizard of Oz-like.” She agree and told me to watch out for any clouds that formed a funnel. As she continued to drive the bottom fell out and sheets and sheets of rain began to pound the car. I sat up from my inclined position to be an extra set of eyes on the road for our safety.

As we exited off towards our destination we saw at least a dozen cars pulled off of the highway on either side. I have never seen that many cars pulled off the road because of rain. Shortly after, just in time for us to depart from the car to the five-story brick building that would hopefully bring me relief, the rain stopped.

We were thankful that the rain stopped but there was still a mighty wind that chilled us as we walked in. The kind of wind that later in the day we would see took the roof off of a building we rode by and the kind that knocks over power lines, reroutes traffic and ends up on the evening news…Yeah that kinda wind.

We both had to use the first restroom we came to in the Urology Center. I was in pain because I needed to go so bad. Then we made our way to the fifth floor and I checked in. A few seconds later a friendly nurse took me to ask some questions and check how full my bladder was with a wand.

When the second nurse came in to ask me questions before she sent to me to another part of the Center for the instillation, I told her I needed to go to the restroom again.

She sent me down the hall for the instillation. I found my sister in the first waiting room and she went with me to the second waiting room in the Treatment Center. They told me it would be a long wait. I had to go to the restroom one more time before I went back for the instillation since I knew after I had it I would need to hold it as long as I can to get the most benefit.

The nurse that gave it to me was great. She instructed me on how to do them at home and actually seemed to care about helping me. I hugged her before I left and thanked her for being so nice!

Then my sister and I made our way to a nice little deli that my husband and I used to always go to when we had to make this trip. It is something to look forward to on a trip that can be quite uncomfortable for me. And when I remembered that they serve “FREE” ice cream it made me feel like a kid again.

We enjoyed our meal and headed on our way. We both agreed that it was a shame to go to a larger city and not do any shopping, but I certainly did not feel like it and was ready to get home. I lay in the back seat most of the way home and rested my weary body. When I got home I tried to void but was unable to until about seven hours after my procedure.

That evening was hard for me. My stomach/bladder/pelvic are were swollen and I had an extreme amount of pressure and pain. It was difficult to even find a comfortable position to rest in. The next day I felt better. I still had bladder pain but not as much and I didn’t have any lower back pain. I was able to go to work for a few hours and I made it to church that Sunday morning. I felt better for a few days…

*WHAT IS AN IC FLARE?

IC flares are not the same for everyone. Nearly 750 people responded to a 2009 ICA Quick Poll asking them to define an IC flare. Definitions included:

• Period of extreme pain with increased urinary frequency/urgency across several days or weeks (19%).
• Sudden increased intensity of symptoms (12%).
• Dramatic increase in IC symptoms across several hours (7%).
• Worsening of symptoms from baseline (5%).
• Subtle worsening of symptoms (4%).
• Over half (52%) of the IC patients surveyed felt that all of the above definitions defined an IC flare.

– See more at: http://www.ichelp.org/about-ic/symptoms-of-ic/icflares/#sthash.pnFhDqqZ.dpuf