My Own Little World

For the last several Thanksgivings, I have helped my Mama prepare the meal. She always does the majority of the cooking, but I would bring one dish and help prepare another dish. It is a tradition that I look forward to every year. This is such a special time that I spend with my Mama before anyone else arrives for our dinner. She always breaks out with the aprons that my great grandmother handmade and we both wear them. I love those little aprons.  I vaguely remember my great grandmother. I was 6 years old when she died.  I do fondly remember staying at her house and that she was a sweet and adorable person.

This year when I called my Mama to help plan Thanksgiving dinner, I asked her if she wanted me to come early and help and she said  "no." At first I was very heartbroken. After all these years, she didn't want me to help and share those special memories or make new ones??!!  I felt betrayed by my own Mother - what a feeling!  She said it would be too much for me to try to help cook this year. After much careful thought and consideration, I asked my daughter to take my place. She said that she didn't know how to cook. I said that is why you should go, so you can learn. I thought it would be a great time for my daughter to learn and spend some special time with her grandmother.

When Thanksgiving day arrived, I planned on sending my daughter a text a couple of hours before she was supposed to be there. You know, just in case she planned on ditching the whole idea. But my brother and his wife were spending a few days at my house and time slipped away from me. I sent the text at about the time she was supposed to be there. I was so proud when the reply text came back that she was already there!

Determined to help and enjoy some of this special time for myself I arrived early too.  I wanted to at least be there before everyone else arrived.  As it turned out my brother and his wire rode with me. By the time we showed up, my Mama and my daughter had everything ready.  All the food was cooked and the table was set. Again, I felt a little disappointed but at the same time, I felt immense pride.  Someone had taken my place, but it was my daughter and I was very grateful.

After the meal, I usually help clean the kitchen.  It has always been something that I enjoy doing. Helping my Mama clean up after she worked so hard preparing our meal just seemed liked the least I could do.  This year things were different. My daughter once again took my place and cleaned up after we all ate. I can hardly describe the joy that filled my heart.  I am able to do less now, but my young daughter stepped in like a responsible adult and took control of the situation.

At first, I think she was afraid. She was afraid that she would not know what to do.  How many times in our lives do we let fear hold us back from trying something new or helping someone out?  We are so afraid of getting out of our comfort zone, but there are people in need all around us.

As an IC patient, I am limited in what I can do, but that doesn't mean I can't do ANYTHING!  I can reach outside of my own little world to help comfort someone else in need. I can call someone who is sick or who just may be lonely. I can't cook a meal for a person in need, but I can buy them lunch.  I am unable to do much shopping, but I can go online and buy gifts for a needy family.  I can give one of the most precious gifts of all, my time.  I can send a Christmas card to a neighbor or friend. We all have different talents. Consider what yours are and use them to share joy with someone else.

Don't let fear hold you back from making a difference in the life of someone this holiday season.  If we share some of our talents, time or money we will have joy in return. I have been blessed with so much in my life, I always try to reach out to someone in need, especially this time of year. If you do not know someone in need, contact a school or church.  I'm sure they will be able to put you in touch with someone that has needs or just needs a friend.

"Each of you should give what you have decided in your heart to give, not reluctantly or under compulsion, for God loves a cheerful giver." II Corinthians 9:7

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 http://www.ichelp.org

 

Thankful???

I started physical therapy on October 29^th for Pelvic Floor Dysfunction (PFD).  PFD is usually related to the presence of too much tension in the pelvic floor muscles. Unexplained pain in the low back, pelvic region, genital area, or rectum  are some of the symptoms of PFD. The first visit consisted of answering questions and a physical examination. On the second visit she externally placed electrodes around the anus to measure whether I was able to effectively contract and relax pelvic floor muscles.  Let me guess what you are thinking; that was TMI and she gets to have all the fun!  But actually it has not been too bad, because my therapist is wonderful. On the second session she also performed Myofascial Release. Skin rolling or Myofascial Release is a highly specialized stretching technique used by therapists to treat patients with a variety of soft tissue problems. While she was doing the treatment she asked if I was ok and I said that I was not going to punch her, yet, but it did not feel great.  She was all over my "no touch zone."  She was rolling on my stomach and inner thighs.  I am surprised that she and I both survived without any harm or injury to either of us.  I am happy to report I have felt a huge relief  from the pain in my inner thighs and pelvic area for the last 2 days.

As she was performing the treatment, she asked me how my IC started.   I told her the story of how I thought it was a bladder infection and how I went through 3 rounds of antibiotics only to feel worse. My gynecologist was then suspicious of Interstital Cystitis (IC) and sent me to an IC specialist. The specialist diagnosed me, but did not have any compassion.  I then found my urogynecologist with the help of the ICA’s referral list. I told her that he understands IC and has compassion. I was starting to tear up. I said as an IC patient, I needed a doctor that was compassionate and I still need that today. Every time I go to a doctor, I need compassion. Which brings me to my thought for the week.

As thanksgiving approaches this year I began to think “what do I have to be thankful for this year?” After all, I have been diagnosed with an incurable bladder disease, what could I possibly be thankful for??!!  This has been the most difficult year of my life. I feel like I have been through so much pain and suffering. Thankful??? I'm not feeling it!

But then I began an in depth consideration of the matter.  I am actually thankful for so many things. These are just some of the things that I am thankful for this year. I am always thankful that God watches over me and that He is in control of my life. I am eternally thankful for the support of my family through my IC journey. Without their emotional support I know this would be so much more difficult. I am indebted to  the ICA and all that they are doing to raise awareness and  support research. I am forever thankful for the ICA’s facebook page that has united me with some great people that are going through some of the same things I am going through and always give me support.  I am also thankful for my gynecologist who had enough knowledge to know that I might have IC. I have read about so many people who have suffered needlessly for years with no diagnosis or who have been misdiagnosed.  I am also appreciative for my urogynecologist who was not only sympathetic, but was also able to offer different treatment plans to get my pain under control. I thank God for my Urologist who wants to treat the problem and not just the symptoms.

I am also grateful for a physical therapist who is so excited about what she does that I cannot help but be excited about what she is going to do for me. She listens to me and understands how much pain an IC patient is going through. When I went to see her Thursday, I was crying as I was talking to her because I am so thankful for the medical professionals in my life who are truly making my journey more tolerable. I was also crying for the many people who suffer unnecessarily and who I want to help as much as possible.

If you do not have a close personal relationship with God all you have to do is admit you are a sinner and ask him to come into your heart.  He can comfort you no matter how much "rain" is in your life.  He will never leave you and He is always there for you.

If your family is far away or you don't feel close to them. I hope that you will reach out to them during the holidays, so that they know how much you love them.

If your doctor does not understand what you are going through or if you are not being offered different treatment options, I think you should look for another doctor. If your doctor is not compassionate, I urge you to seek another medical professional. Whether you are being treated for IC or something else, you deserve quality medical attention. If your doctor does not believe your pain is real, it’s time to move on. If you are in an area where medical assistance is not readily available, I suggest that you do your own research to help yourself as much as possible. If you work in the medical field in any capacity,  I sincerely hope that you will treat your patients the way you would want to be treated. Good, quality medical professionals are such a blessing. This year I am thankful for the exceptional treatment I have received and I pray that EVERYONE receives the quality treatment that they deserve!!!

Be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus.
1 Thessalonians 5:18

Please make an effort to listen to the music at the end of my posts. I choose each song very carefully and the lyrics usually go right along with the point I am trying to make.

Please feel free to leave me your comments or suggestions below.

 http://www.ichelp.org/

Broken

On September 19^th I had a cystoscopy with hydrodistention or a bladder stretch. For this procedure I was given general anesthesia and my bladder was filled with water to an amount that would be painful if I was awake. This procedure is used for diagnosis, treatment guidance and sometimes provides relief of symptoms. At first I experienced an increase of my symptoms then I was extremely nauseated for about 3 weeks and then I started feeling better. My back pain was mostly gone, my stomach was not swollen or hurting anymore and I was starting to get some of my strength back, I was feeling good! 

I thought I was in a remission of sorts. Then out of no where this week, I was in a flare for the first time in months.  My symptoms started on Monday, but I was in denial.  I was just hoping I had the flu or something like that, anything but a flare!  I wanted to capture my thoughts and feelings while I was in the flare, so that you could understand more how it feels for me and other Interstitial Cystitis (IC) patients.

Today is Tuesday and I have given in to the fact that I am in a flare.  A flare has been described as a sudden increased intensity of IC symptoms. My symptoms right now are unbearable lower back pain and achy all over. These symptoms are in addition to my usual frequency, IBS, fibromyalgia,vuvodynia,low energy and feeling like I have an UTI. I feel like I have a fever, but I don’t and I do not have any strength at all. I don’t feel like doing anything today, except crawling back into bed and going back to sleep, but I am determined to continue to work every day, so I have been working from home. To give you an idea of how severe my back pain is, I want to describe it. It feels like I have knives sticking in my back causing a stabbing pain. I accidentally scratched the part of my back that hurts so much and it brought tears to my eyes. The smallest amount of pressure is intolerable. I can't take the pain any longer so I call the doctor’s office, hoping that I can get a bladder instillation (medicine instilled directly into the bladder via catheter) and was told he could see me tomorrow. I am so disappointed right now, so I just cry. I do not feel like waiting until tomorrow for relief, but I guess I will take some more pain medication and keep trying to feel like a normal person. Right now I feel like less of a person because I feel like IC is winning the battle today. I feel let down and frustrated that I am unable to do anything to help myself at this point. This is a very familiar feeling and it just gets to be too much some days.  I always try to be a positive person, but I think everyone should know just how frustrating the life of an IC patient can be at times.  One minute you feel fine and the next minute your body won’t let you do the things you need to do and your spirit is broken. 

 I force myself to go into the office. I was so nauseated on the way , I could barely drive and I was fighting the drowsiness of the pain medication as well.. Once I got there I still felt miserable, but I was glad I went in so that I could enjoy the company of other people and not focus on my agony. I was almost too weak to talk or walk, but some how make it through the day.  I went home at 5:00 which is unusual for me; I tend to work late most days. I came home and went to my sanctuary (my bath tub for those who have not read my previous blogs; yet!). I went to bed at 8:00, but because of the pain medication, I kept waking up for several hours during the night. It was a very rough night.

My doctor's appointment is today (Wednesday) so I go in for an instillation. I ask the doctor to refill my pain medication and he did, but not without a warning about getting hooked on pain pills. I fell like I am being kicked while I am down. I feel so broken.  I want so badly to continue to be able to work.  However; it seems like such a struggle at times. Not many, but some days, I hurt so bad that I need pain medication in order to just be able to work.  I feel betrayed by my body. I want to work, but how much more of this can I take?

By Friday, I was feeling much better. I thought back on this week and wondered why I went through such a difficult time. This past Sunday, I had told my brother that maybe I need just a little pain to keep me closer to God.  I also think it helps me relate and have compassion for others who are suffering.  If that is God’s plan for me, I pray that he will keep me strong enough to help others as much as possible. I know that many of you feel broken, but I hope that you will find the strength that you need to help you in your daily struggles and hopefully I will be a source of encouragement for you.

Philippians 4:13  I can do all things through him who strengthens me.

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The Rock

This weekend my family celebrated the life of a Rock. Sounds exciting already doesn't it? The rock I am referring to is my mother. She will be 80 years old on Tuesday. She said this weekend that she is officially old. Prior to that she referred to other people as being old, but never herself.  I think she derived that mentality from her Dad. When he was about 90, he was interviewed by our local newspaper for volunteering for Meals on Wheels. He said he liked to help old people. He lived 95 wonderful years. When I think of him I think of a man with gentle ways and a smile on his face..  Now my Mama volunteers for Hospice House and I see so many similarities between the two of them.

I asked my Mom where she would like to go for a day trip to celebrate her birthday. She came up with eating at The Dillard House for lunch. She said she didn't realize that it was 3 hours away. So we decided to make it an overnight trip. Way to get more bang for your buck Mama. Not only does she get a day trip, she also gets an overnight trip. Alas, she is still sharp for her age!

Let me explain why I call her the Rock. There are so many reasons, but the main one that stands out to me, during this time in my life is that I can always depend on her, no matter what. She comes to my house once a week to help me clean. Not because she has to, but because she seems to understand and sympathize  better than anyone with what I am going through. She seems to understand what it means when I say I don't feel good or I didn't sleep well or that I can't do as much as I could before Interstitial Cystitis ( IC). Prior to my diagnosis of  IC, I only called her on the phone, every once in a while. And I would see her only occasionally. Now I call her often and see her every week. Sometimes when I call her, I just need to hear that voice of reason, that will always guide me in the right direction. Some days I just need a friend that will listen without judgement. She is all these things to me and so much more.  Sometimes I feel as though I am the prodigal daughter and I have returned home and as always she greets me with open arms.

As I celebrate the life of this solid, dependable, Christian woman, I also celebrate the life of one of my closest friends and the best role model a person could ever ask for. I celebrate the lives of those whom she has blessed, myself included. Without her living her life the way she does, I don't know where I would be today.

How about you? If your Mom passed away today, would you be happy about the amount of time you have talked to her, spent with her or just listened to her? I know this is a  harsh thing to consider, but I think about these things all the time now. I know even more so now, that each day is a gift from God and we better live it in a way that is pleasing to Him. So, if you haven't talked to your Mom or spent time with your Mom in a while, you should make the effort to reach out to her. We all have one Mom, so make sure yours knows how much you love her. Maybe for you it is another family member or a friend that you haven't reached out to in a while. Go ahead and take the first step. I guarantee you that you will feel better if you do. Reach out to your loved ones in your time of need and you too will be blessed!

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"So he got up and went to his father. But while he was still a long way off, his father saw him and was filled with compassion for him; he ran to his son, threw his arms around him and kissed him." Luke 15:20

I dedicate this blog to my Mama. I can always turn to her when I need a friend.

My Mama

My Mama & brother Clayton GA

My Mama, The Rock