2012 ~ 2013

The World of Pain is a private one. It’s one in which you feel enclosed in a different world.
(Adapted from: Jane Grayshon’s book A Harvest From Pain).



My Journal for 2012 – 2013

Most recent entries toward the top.  Click here  for 2014

I’m writing this as a way for those who love me to keep up with what’s going on with me.   It is intensely personal.  We live in such a fast paced world that before we know it days, weeks, a month has gone by and suddenly a person will come to our mind whom we love deeply, or care for very much, or perhaps they are a distant acquaintance and wonder what’s happening in their lives. We wonder; are they okay?   What’s new and/or what are they up to. Entries dates are most recent/descending.


From: 10.11.12 – 12.31.2013


me

December 31, 2013 – I have much to write on this subject now but it seems what I have is “morphing” into something else.  It looks like what I truly have is a trapped pudendal nerve which in reality is contributing to all this pain.  Today, I met a wonderful woman online named Judy who is suffering with what sounds like what I have, BUT she’s been suffering for 7+ years.  TODAY, we spent 5 hours on the phone getting to know each other.  Much more to come on that.  But for now.  Happy New Year everyone.  I love you.

December 12, 2013 – 80% better.  Slipping backward.  I must be doing too much. I’ve had several days of pain in a row, requiring medication AGAIN.  I missed church on Sunday.  How long oh Lord, how long?

November 11, 2013 – 90% better.  A few bad days last week, had to reach for medication AGAIN.  Thankful that I have it, but of course wish I didn’t have to take it.    Sitting is still a huge problem and brings on pain.  Had spinach the other night and it felt like a FIRE was inside my bladder.  It’s just the same old, same old.

October 29, 2013
– 90% better.  Today is the one year anniversary of Hurricane Sandy.  It’s also been a little over one year that I’ve been dealing with IC.   I didn’t really start journaling about it until Nov. 7, 2012 but looking back over my posts I remember the agony I was in.  At this writing I am able to (within reason) drink coffee again, occasional wine, and pretty much eat anything I want.  I eat mostly a plant based diet so that’s really not much of an issue, but up until a few weeks ago, I wasn’t able to eat any of the night shade foods and included in that group is my absolute favorite food of all . . . TOMATOES.  I can eat tomatoes again.  Thank you God, thank you Father God … I am so grateful to you.   Perhaps by this time next year I can say I am feeling normal again.  Thy will be done.

October 27, 2013 – I’ve been having some wonderful pain free days.  But today, I did way too much sitting.  Sat for hours at church, then after church at lunch, then to friends house and watched a movie, then out to dinner.  The pain started just after lunch, but we were having such a great time being out I didn’t want to ruin the day by going home to lay on the couch, but by the time I got home, my Pelvic Floor was on fire.  Part of the problem was that I had slacks on and any cloth next to my sensitive skin is intolerable after a few hours.  If I had known I was going to be out all day, I would have worn a long dress.  By the time we got home (7:30 ish) I ripped off my clothes and put on my comfy robe.  “Ahhhhhhhh”.  I took a pain pill and laid down on the couch.   Within a couple of hours I had relief.  So I HAVE to remember that if I’m going to have a long day OUT of the house, I MUST wear a dress rather than slacks or leggings.  But other than that, I’ve been doing very well, and don’t need pain meds every day.

1380486_10202441087378292_1933743471_nOctober 17, 2013 – 90% better – For over 10 days now I’ve been “mostly” pain free … if I do too much sitting, I do feel pain, but I can eat (within reason) just about anything I like now.  I keep wondering if it is on its way out.  But at day 7 of virtually no pain, I slipped back again.  I did nothing different.  It is simply the nature of this condition.  I continue to trust God for a complete healing.  Only he knows when my day of “completion” will be ended.

September, 2013 – Pretty much the same as August.  Every day I have some measure of pain.  Most days I need to rest at some point, and almost always medicate before bed.  Asking God to grant a complete healing before my birthday on Oct.13.

August 4, 2013Woke to exhaustion this morning.  I was scheduled to sing at two services at church and had to cancel.  That was very dissapointing to me and left me feeling very sad.  I wrote on FB that I was thinking of inviting everyone to a FB pity party.  And so, I wait, I wait for healing from the hand of God.  

August 3 2013 – Not Good – Went out to dinner with friends tonight D&KO.  Wonderful time.  Had 2 cups decaf coffee.  My bladder is on fire.  I did take Prelief.  But Coffee doesn’t seem to bother me anymore though.  I think there may have been some MSG in the food.  I’m going to back to being strict for a while and writing down everything I put in my mouth.  For months on end I rarely ate out, but lately I’ve been venturing out more and more.  So it’s back to the drawing board.  This means most likely I’ll lose another 10-15 lbs because when I eat strict it means basically just fruit/veges (no seasonings), some fish/chicken.  NO BEEF (makes me flare).  Scant nuts.  No white flour and actually grains can sometime cause a flare.  Sooooo that doesn’t leave too much to eat.  Also citrus fruit (which I love) can be an irritant too.  It definitely makes me flare.  No sugar, salt, alcohol, chocolate, coffee.  Strange though, I can tolerate ice cream, but try to stay away for obvious reasons.  I hate having to do it, but I’m having too many bad days.  I have the needle and spasm thing tonight. Really really bad pain.  Hubby is sleeping alone.  I’ve taken a pain pill and now will be up for hours until the worse of the pain subsides.  Dear LORD, how long.  How long.

June 9, 2013 – Slipped backward – I’ve been in and out of bed with medication now AGAIN for days. I don’t think it’s diet related. I think because I was feeling so much better, I may have done too much AND sat too much. And so I begin again.

May 6, 2013 – 65% better.

April 24, 2013 – 60% better.

May 7-9 – Productive, no flares. Except for a few momentary sensations, pain free, and energetic.

May 6, 2013 – Monday – I snapped photos while walking today. I just love spring. Able to work a few hours a day. Still have to be very careful with my diet. I am able to drink 1 cup (no more) of coffee, but must use Prelief. Still have to take pain meds occasionally. Still suffer flares a few times a week, though they are less intense. It’s difficult to track what brings them on as I mostly stay away from offending foods. I think it’s possible that something I ate even a few days ago can bring on a flare. Sometimes it’s physical, such as an over exertion of some kind. We’ve been doing gardening around our house so it could be that triggered my most recent flare.

I’m planning to be even more watchful this week in terms of diet, track what I put into my mouth very carefully and see how I do. Assuming no travel or extreme stress, journaling will help me analyze if my flares are triggered by food.  Common triggers of Interstitial Cystitis Flares: Medications, diet, (including certain vitamins and supplements), exercise, sexual intercourse, hormone fluctuations, stress, certain modes of transportation or long trips, and even tight clothing. It’s almost impossible in this world we live in to eliminate all stress, but it is wise to stay mindful of it.

April 26, 2013 – Saturday: Early evening. Today I woke up energized and bustled around doing lots of housework type stuff. Cleaned, organized, cooked. I had so much energy and barely any pain. Later in the day, I went to hubby’s softball game today. Then some dear friends and the kids came over for dinner and dessert. I had a couple of things to eat that could be trigger foods, but took some prelief and hoping for the best.  It was a good day. A very very good day. And the weather was exquisite.  Thank you God.

April 26, 2013 – Friday: Feeling Great today, almost like the old days before IC. Woke up at 6:00 (my normal wake time before IC). Felt rested. Got up and made a wonderful drink which I feel is like a Nectar From Heaven. 5 Carrots/1 medium fuji apple/1/4 red beet/1 slice ginger. It made about 10oz. So yummy! For Lunch … A green drink with Kale, Turmeric, and Apple.

April 24 – Wednesday – I am about 60% better. I usually have a couple of good days in a row, and then I’ll have one bad one. There is no rhyme or reason, it just seems to be the nature of this condition. I am so happy for the good days and usually try to do something I really want to do or that needs to be done during pain free hours. I’m usually trying to play catchup with life then. We recently travelled to a medical conference and that proved too much for me. It triggered a bad and painful flare [like I had in the beginning] and landed me in bed for more than 8 hours. Travel is still challenging for me. That is very common with IC sufferers. The good news is that I see progress and see bits of improvement month over month. I am hopeful that by my birthday, October 13, I will be totally pain free. I have to date lost 30 lbs. This is mostly due to dietary changes. I do not eat the SAD (Standard American Diet) any longer. I eat mostly fruts, veges, quinoa/rice (my grains of choice) nuts/seeds, white beans [sometimes whole grain bread with almond butter] and lots of water, which I use to make teas that are bladder friendly.

Teas: Marshamallow/licorice/nettle/chamomile. I have hope. I always have hope.
March 30 – Saturday – Last night I sang for the first time in 4+ months. Our church held our annual Cantata and I sang a song from my album. Unfortunately, I experienced a MAJOR flare which began toward the end of the service (too much sitting, which can often make me flare). So here I am up in the middle of the night. It was, however, wonderful to sing again and be in church for such a beautiful occasion.

March 25 –Monday – Bloodwork and into NYCity for Physical Therapy which will continue for 8 sessions (at least). Was flaring at the outset of the appointment and virtually pain free when I left. This therapist has helped many people with the pain of IC. Some have even healed and are totally pain free living normal lives. I Am now following Dr.Fuhrman’s Six Week ETL diet. Dr.Fuhrman has helped many people heal from auto-immune disorders.

March 5 – Tuesday – Went into the office for a short meeting today. It was a beautiful bright sunny day, so later in the afternoon I took a 15 minute walk. It was wonderful.

March 4 – Monday – A bit of a tough weekend. Spent the entire Sunday at home resting. Went to church via internet. Thank the Lord for that. I was very careful what I ate on Sunday. If you’ve been following me, you know that certain foods can bring on flares. It may have been a food I could eat yesterday, but today causes pain as it passes through my digestive system. Stress of any kind can also bring on a flare. It’s all quite mysterious. Today, However, I feel normal. That’s how it is now, some days are diamonds (and I”m thankful for that) and some days, not so many diamonds but more stony ground. This makes it impossible to plan for future days as I never know what one day will bring. I am planning to go into the office for a wee bit tomorrow. I am at peace. I have a wonderful husband.

February 25 – Monday – A good report. I had an almost pain free weekend. I even worked 1/2 day on Saturday with clients. I also drank some coffee on Sunday. I was taking a big chance, I know, but I did not suffer any flare. I don’t plan to make coffee a regular part of my diet but it was wonderful to be able to have a cup. Thank you God.

February 21, 2013 – I continue to pray for healing, but am coming finally (as I’m confident many do) to a place of acceptance. I am learning how to live, love and cling to God. My pain is mostly “manageable” now. I am working (very carefully) now again. I have a partner with me so that if I have a bad day I am still able to fulfill commitments. I have not made any singing commitments and do not see myself doing so anytime soon.

I know what foods to avoid that will throw me into a flare. My best time is bath time. No matter what pain I have, a very hot path ALWAYS takes it away. It is widely know the therapeutic benefits of sleep, so I sleep as much as possible for this is the most healing physical thing I can do now. I try to avoid medications, though I will use them if I have a bad flare or any discomfort which keeps me from sleeping. Medicine for my soul which is also, I believe) healing for my body is God’s word (The Holy Bible) and books written by men and women who love him. I Especially love books written by people who have gone through long stretches of pain. There are golden nuggets in those books and I eat them as if eating candy. Truly God’s word, and the words of those who love and serve him is my medicine. LOTS of Prayer and quiet time are key, and I continue to covet the prayers of those who love me. I am at peace.

February 07, 2013 – Thursday – This past Monday I had my 2nd visit to my specialist. Thankfully he did not insist on a cystoscopy. To make a long conversation short, I felt the visit could have been done over the phone rather than having us drive 1.5 hours to this sought after Dr. Nonetheless he did offer a couple of new suggestions for medication. As for how I’m feeling, I feel that if I keep up my diligence of a very careful and bladder friendly diet, I may be able to heal. I continue to ask God to have mercy on me and heal me. I am not a “name it and claim it” person. I don’t believe we can command God, or demand anything from him based on the promises of his word. To quote from a book I am reading now entitled THE REAL FAITH FOR HEALING (Charles S. Price 1997) regarding healing: I do not have the faith I need. Only Jesus has the faith I need. Only Jesus can heal me if it is his will. I want, and am willing to be healed. So I ask, I wait and I watch what my LORD in his infinite wisdom will do. I continue to have good hours and I continue to have some not so good hours, but I am learning how to manage my pain. I am blessed to have a husband who loves me and is there for me at every turn.

January 31, 2013 – Thursday – I am rebuilding, renewing, restrengthening. and believing that God in his mercy has the power to heal me. Isaiah 53:4. Thank you Father God for what you are doing in my life. You are drawing me closer and closer to you.

January 30, 2013 – Wednesday – I rarely take pain meds any longer. I hate the side effects. I heard about the health benefits of Marshmallow Root Tea and so this week I added Marshmamallow Root Tea (I purchased it from Monterey Bay Spice Company Online) to my daily regimen. It’s supposed to be wonderful for IC and everything “muscosal” from head to toe (i.e. cold and flu season).I have some good hours (no days yet) and some bad hours, but I Trust that God is allowing my body to do the work he designed it to and I believe I am healing. I am now on a very strict diet in the hopes that it will facilitate healing. I continually struggle with pain in varying degrees. However, I no longer get the awful “razor, cutting like symptoms” I used to. I am thankful for the good hours and especially pray forgood DAYS !

January 16, 2013 – Wednesday – Everything is pretty much the same as you’ve read in my entries below. I have some good days and some bad days. I am now on a very strict diet in the hopes that it will facilitate healing. I continually struggle with pain. I enjoy some good hours and especially pray for good DAYS !

January 12, 2013 – Saturday Today, our daughter Serena took her wedding vows with Christian Jackson, of Rochester, NY. They will make their home in Connecticut. It was a beautiful day and I was was so thankful to be able to go! I took some Prelief and ate some cooked food and even a slice of cake for dessert. I had literally one gulp of coffee and a small sip of wine. Hubby and I danced a few times and I even got to sing Serena a special song. A happy happy day !

January 4, 2013 – Friday – I am off the pain meds. I have been at a very low pain level (and many hours of the day with no pain) for 3+ days now. I’ve gotten this far before, but have gone backward. So … I’m being very careful to watch everything I eat. To rest. To take my two baths a day and hope/pray for the best. Yesterday two of my very dear friends came to have tea and it was good to visit, laugh, and pray. They brought me a beautiful “sunshine basket“. Last night I ate strawberries and cherries thinking my bladder could take it, but it took me into a flare. I just geared up under it because I was hoping it would pass by the morning. For the most part it did. Thank you Lord. This is a scary disease. I have also decided today to NOT look up anything else about this disease online. I am going to the Lord to pray, meditate and think on lovely things. I am eliminating the “stress” of watching the news and I’m only watching things on T.V. that feed my soul and lift my spirits.


images
January 1, 2013 – New Year’s Day 

For the past few days I’ve been in and out of pain. Basically the same scenario as all the days before. I have now worked myself out of DENIAL and I have come to the point that I’ve realized and learned that my diet has to change. Now this never would have occurred to me, because except for coffee, and occasional chocolate my diet is a whole foods diet. But even so, I use a lot of spices and tamari and I found that I tend to like more acidic foods. So for the last few days, I’ve been educating myself what foods are acidic. Guess what? Most foods are. Even if they are not acidic, virtually every packaged, processed food (cookies/desserts … even gluten products) are full of ingredients that will torture a sick bladder. Also, we are not big meat eaters so that wasn’t a problem to eliminate. I can have light fish, poultry, even beef, but it’s not a big part of my diet.

In any case, I would say that for the most part this was not a great holiday season for me. Of course we know that the holidays are not about “having fun” they are about focusing on Jesus, but it’s nice to be well enough to go to special events/parties, etc. I’m not going to sugar coat it, this has been awful, isolating and quite debilitating for me. I miss the life I used to live. I’m moving forward with planning a whole new way of eating now. I’m still on pain medication and look forward to getting off of it. They are very constipating (which adds to IC discomfort) and so today I’m home (where else) attempting to remedy that discomfort (if you know what I mean). Also resting and, thank God with very little pain. Home is the best place for me now.

December 24-25 – Christmas Eve and Day – Those “squeezings” I had were glimmers of the future. Christmas Eve morning I did fairly well. In the afternoon the pain began to develop. If I was going to go to Church it would mean I would have to take some pain med. Well, I did, and it was wonderful to be out. Christmas Day … I was miserable. Just in so much pain. I obviously need to find a pain management specialist. The pain medication wears off in a couple of hours and I am left to “cope” for the rest of the day in true misery. I know this all sounds like drama/but I’m getting the feeling this is going to be a long long road. There is NO CURE for this awful monster inside me. I feel like I can’t plan anything, go anywhere. I am a music minister, and a realtor. People depend on me, and I’m just so disappointed that it’s still attacking me. I’m beginning to take a new product my husband found called Cystoprotect. The doctor talks about it in this video . He also offers one of the best explanations of IC I’ve found.

December 21 – 23 2012 – Friday/Saturday/Sunday – The weekend before Christmas – I woke up on Friday and just felt more tired than I can remember in years. After I woke, I made myself some food, washed a few dishes, and made a batch of Granola. After that I knew “this is it”! I have to go back to bed. I stayed in bed. Slept on and off, and even slept through Friday Night. I woke up Saturday and it was a repeat of the same. EXCEPT … I had no pain. NONE. Sunday we went out for breakfast and had a wonderful day together. A felt a couple of squeezings but tried to ignore it. But I have not had to take a pain pill in two days. It’s 9:35 pm now, as usual I’m writing from my bath and I am thankful. Oh Please God, is it gone?

December 20, 2012 Thursday – A challenging day today. I have to leave the house. I’ve left my home a handful of times since this all began. 3 times to go out for dinner (but it was never as nice as it usually was, because I didn’t want to spoil the time with friends with talk about all this … you learn how to smile even when in severe pain. Believe me, it’s easier (though loonier) to stay home. The other times I went out were for doctor visits. Those don’t count. But today I had a real estate closing. I didn’t “have” to be there, I wanted to be there to support my friend whom I’m representing. So I took a pain pill, she drove and off we went. I made it through, then came home, ran my bath and went to bed for the rest of the day. I was exhausted. I used to do 15-20 things a day with high energy, now I do one thing and I’m wiped out. I’m thankful that pain medication exists to help me when I need it, but I will be so thankful to get off these things. I will never understand how a person would CHOOSE to be on narcotics. Having to take them is one thing, “choosing them” … well that’s another post.

December 18, 201 – Tuesday – not a good day today. PAIN/tired/tears. I sat in the bath for two hours. The HOT HOT (as hot as you can stand it without burning oneself) bath really soothes the pelvic muscles. My doctor said “you should be a mermaid”. No seriously. The longer I can stay in the bath and soothe those pelvic muscles, the better. So, you see, the pain, the fatigue, the urgency to urinate, the fullness, ALL OF IT, just kind of comes and goes. It’s no worse, but not gone. It just keeps coming and going. It has absolutely affected my desire to be social. Mostly because of the fatigue. I tried having a dinner party for close family Sunday afternoon, and I didn’t do too well. I’m usually a very good cook, but I didn’t really like what i made. I am just not “me” right now.

One great thing though … I can watch movies on my computer while in the tub. I can blog. I can read. Talk on the phone. It’s just a party in there. 🙂 Okay, enough, I think you’ve got the picture. I am learning patience and LOTS of other things.

December 17, 2012 – Monday – A “fairly good weekend”. Only pain (for the most part and as usual) in the late afternoon and early evening. The bath REALLY helps with pain. Yesterday (Sunday) the children and our granddaughter came over. I think I may have done a bit too much and some “mild” pain came back late in afternoon. BUT … I’m feeling better and better everyday. Today a visit to my obgyn to go over the blood levels taken last visit on 12.3 and strategize a protocol to normalize my hormone imbalances which have everything to do with helping (or hurting) healing from IC.

December 13, 2012 – Thursday – Day’s half over. Totally A-Symptomatic. Hmmm, is there supposed to be hyphen there? Anyone know? I’m writing this while visiting “The Tender Spa”. That’s the new word I’m giving to my twice daily “bath room”. If anyone every told me I’d be sitting twice daily in a tub (for a minimum 15 minutes each time) journalling I’d have hit them over the head with my bath brush. But sitting twice daily in a spa, well that’s a totally different story. It’s all a matter of perspective. Lol ! On yet another note; made it through my “booby check” (annual mammo) which wasn’t altogether fun. But it’s OVER for another year. Ladies you know what I mean. OY! These bodies of ours, scripture says they are fearfully and wonderfully made. Fearfully, yep. Wonderfully. Gotta think about that one a little bit.

December 12, 2012 – Wednesday – Today I went “backwards”. If you’ve been following my story you know what that means. T’was not the best day. I’m borrowing some notes here from my epilogue page for today from Chapter 5 of Jane’s Book, A Harvest From Pain. I can truly relate to Jane’s sentiments today. Pg. 60 – … enjoying a good patch at the moment. (I love having those “patches of good” where there is little to no pain). It makes me so thankful, and reminds me how much I took perfect health for granted. Pg. 63 – … “although I’m better at the moment, pelvic inflammatory disease is an ongoing condition. People can’t necessarily tell by looking at you how you really are “deep” within yourself. In fact, some people may even get confused because they think “gee she looks okay” I guess she’s all better. But IC has many faces, and today it showed one of its uglier ones. And so, it’s easier to put on a happy face, some make-up, fuss with ones hair, dress nicely and “smile”. I needed that Mickey Mouse Kiss today. I’ve always been an optimist and I am going to “put on” a happy face, inside and out.

And so that’s how it has been for me the last few days. I enjoyed a “good patch” and many hours free of pain, but today it came roaring back. It brought along a friend “shy bladder”. If you’re a woman, I don’t have to say anymore. If you’re a man ask a woman what’s it’s like when she not only has a painful UTI, but on top of it all, she can’t urinate. This, no doubt, has to do with my pain management protocol (drugs for pain). Oh Thank You Lord for your Tender Mercies …. I selfishly ask to hear from Heaven and that your purpose will be glorified in my life. Heal me Oh Lord and I will be healed. Save me and I will be saved.

December 11, 2012 – Tuesday – Today marks 2 months since my IC “Flare/Attack” began.

December 10 – Monday – I have to give God some glory here today on “The Tender Sphere”. A few weeks ago when I realized my IC had come back, I was tempted to cancel my commitment to sing at our beautiful Ladies Luncheon which is held once yearly at one of our lovely local restaurants. This year it was held at Casa Mia Manor House. Well, we trusted the Lord that I would be able to sing. And …. YES! I sang. It was so joyous for me. It was really my first “outing” in almost two months. God is Faithful. The ladies all looked beautiful. I can’t believe I didn’t take any pictures. But the image is embedded in my memory. Today, I have my usual symptoms, nothing really has changed, BUT I had the victory Saturday, I got to see many people I love (and who love me). Mostly, I felt that God loves me and that is the most special gift of all.

December 7 – Friday – Another challenging day. Symptomatic again, but managing. No razors, just pressure. (Like you always have to urinate even after you just went … OY!) Blood work drawn today to check all lipid levels. I’m lipid, I’m lipid! Poking, prodding testing stuff done until February. Now we wait, we watch, we pray, and I take as good care of myself as I can and I thank God for all my blessings.

December 6 – Thursday – Well, my last posting was at 9:35 last evening. Strange. I had another “flare”. Just out of nowhere. The awful “needle” pain was back. I went to bed at 12:00. Couldn’t sleep and have been up all night. At 3:00 I schlepped downstairs and took a pain pill plus two of the pills that anesthetize the bladder. It’s now 6:30 a.m. and I think I can sleep for a few hours. Oh Lord I’m wondering when this will end. I know that everything you do is good. I will trust you.

December 5 – Wednesday – Wow it’s been more than one week since I posted. In a way that’s a good thing because it means I’ve been doing other things than just lying in bed and/or sitting and journaling. It has been a busy week of doctor visits. In our hearts my urologist and I know that all these symptoms are classic IC signs, BUT we have to make absolutely certain that we “rule out” everything else that could possibly be at the bottom (no pun intended) of this affliction. And so, I’ve been running here there and everywhere to be poked, prodded, and stuck so that we all know (and no doctor is open to liability) for sure that what I’m suffering from is IC.

BUT … the good news is that I did go to see a that world renowned doctor on Thursday, Nov.29th and he felt that I was making good strides and my body is healing and that I seem to now be “on the back end” of this thing. He changed my protocol of meds. Turns out I was taking one of the absolute worse pain medicines one can take in terms of causing constipation. (Yep!) So my prescriptions have changed. I am also “ordered” to take at least 2 baths (in Epsom salts) per day and “sit” in that warm water for a minimum of 15 minutes. Prior to seeing my specialist, my husband had done some research and recommended that I bathe at least once a day in Epsom salts. I kind of fought him on it, because if you know me, “sitting doing nothing” is not easy for me. BUT I am following his directions to the T. My late morning bath happens between 11 and 11:30 and my evening bath happens just before bed. I have to tell you that I’ve seen the benefits of bathing and letting that warm water just “soothe” you. How blessed we are in American to have hot running water at our disposal, virtually anytime we want. I add about 1 Tablespoon to the water and my skin loves the benefits. NO BUBBLEs though. No chemicals! Just an all natural bath, like nature intended.

So … how do I feel now? The terrible awful hours and hours of pain and severe razor/knife like stabbing pain in my ureter area has mostly subsided. I have a couple of more “rule out” tests to complete, but I think once they finish poking at me, my body can finally totally calm down, and (please God) perhaps I’ll be out of the woods by year’s end. But at this writing, I am functioning well, I am thankful that most of the day I am “relatively” pain free, and I am optimistic and grateful for so many blessings that I took for granted before.

P.S. Added at 9:35 p.m. – mostly pain free today. I even had some “fun” practicing my singing for Saturday’s Ladies Luncheon. Felt good to sing again.

November 27 – Tuesday @ 5:30 p.m. – A Good day today. Virtually pain free until 4:00. No pain pill needed until 5:00. Uricalm (the little purple pill that is sometimes a girl’s best friend), did what its name said. It helps keep my bladder “calm” for a few hours so I can get some things accomplished, and I’d much rather take that than a narcotic. Today I even did a little Christmas shopping. Then to the hairdressers for a much needed hair cut. One of my close friends thinks every day the attacks will be less and less until all my symptoms are completely gone. Like I said before, I’m learning what my new “normal” is. I’m learning how to manage my pain, when is my best time of day to attempt outside errands/housework. Depending on what time I get to sleep, my little window is usually between 11:00 and 4:00 in the afternoon. But I’m sooooooo grateful that I can do that. And I’m grateful that my liver test came back with no issues at all. Today was a good day, but boy did I need to get my hair done. Thank God for my wonderful talented and loving hairdresser Laura Vignola, who is not only gifted with hair but has and eye for photography as well. I just can’t say enough about her. The salon she works at is lovely too. It’s called The Parlour and is located in Montvale, New Jersey. What a wonderful staff they have there. I’m grateful for them.

November 25 – Sunday– Friday and Saturday were fairly good days. Both days I experienced some pain: during the day (3-5 on a scale of 1-10, BUT during the later evening the pain goes way up to between an 8-10 again). On Friday I felt well enough to begin my usual custom of decorating the house for Christmas. I keep it very very simple. All of my decorations are housed in two boxes which I keep in my downstairs office. So I very slowly (I don’t do anything quick like I used to) walked around the house and laid things out. The entire process took less than 3 hours. But those three hours were stretched over two days time. And so that’s how it goes these days. What used to take me 15 minutes now takes much longer, but I am thankful that I’m not lying in bed writhing in pain.

teacup

Saturday, A friend (and current client) came over for tea and then we looked at some real estate “online” together. We had a lovely visit. I usually fuss for Tea, but this was not necessary. We just kept it very simple. After a lovely time of conversation in the living room, we moved to my home office where I was able to work for a couple of hours. By the time we parted company, it was time for dinner, and I even felt well enough to venture out to have dinner with friends. We went to a lovely Italian Restaurant. It was delicious and getting out was therapeutic. I’m learning that when something alters your life drastically, it’s good to try to keep things as “normal” as humanly possible. A couple of weeks ago I wasn’t physically able to go out, but, even though I’m still dealing with pain, being out with friends was so good.

For some strange reason the pain significantly increases in the evening hours. I’m wondering if it’s because my pain medication from the night before has made its way entirely out of my body and then the “cycle of pain” returns again.. Later, when I had my usual bath, I decided NOT to take the narcotic. Instead I took a product called “URICALM“. I thought to myself, “if the pain becomes unbearable, I can always reach for the pain pill”, but I really don’t want to take the pain pill. Well, I did have some pain (mostly in the form of the feeling my bladder is full. That feeling of a full bladder makes me get up frequently until I’m so exhausted that I just finally drift off. But it took me about three (3) hours to get to sleep, so I finally drifted off somewhere around 1:30 a.m. My dear husband left early to man his post at the sound board in church. I did not rise until 10:00 a.m. Today I’m feeling pretty well, but will remain home and continue to rest. I think that right now the best medicine is to rest as much as possible and let my body fight this thing. Being “out” can be challenging because of the frequent trips to the bathroom. BUT the good news is that day by day I “seem” to be improving, it’s just that once or twice a week I also seem to go backward, have a bad day and that is maddening. I have had no pain pills today, so it will be interesting to see what develops this evening.

I want to begin exercising again. I feel like I’m gaining weight. BUT, we have to wait and see what the doctor says..

November 22 Thursday ~ THANKSGIVING

WOW …it’s Thanksgiving already, and the beginning of ushering in The Holidays. Yesterday I had four (4) hours pain free. Then, mysteriously, in the late afternoon, the razors/needle, etc., came back yet again. I ended up having to take 2 pain killers (6 hours apart). I HATE taking those things, but the alternative is unbearable.

Woke up this morning symptom free. It is almost 2:00 p.m. and I am still “mostly” asymptomatic. (don’t I sound so scientific?) And so I will take what I can get. Hubby and I made a pumpkin pie this a.m. I can smell it now in the oven and it smells d-lish! We are staying in today and having what we call “a robe day”. We are just relaxing. I’m spending some quiet time with The Lord which basically means I’m sitting up in my quiet time spot (my guest room) with my Bible, my journal and this computer near-by so I can update all of you who may be reading.

And so far, today is a good day. Click here to see how my husband blessed me today. On this day next week, I will be seeing a world-renowned IC doctor. And in the next few days BEFORE seeing that IC doctor, I will have other tests (to rule things out) which means getting poked, pricked prodded, etc., in an area of my body which I would much rather they leave alone.

Where did the fall go. I can honestly say I won’t ever forget the fall of 2012. I spent almost the entire fall in my house and/or in bed. But today I am thankful that I have a home, a bed, a husband, family/friends who love me, an abundance of material blessings that are too numbers to mention. I am not HAPPY this Thanksgiving that I am “afflicted” with this “thing”; but I can honestly say that I have JOY in my heart that as one of my friends put it, this life is short but eternity is looooooong. One day these earthly trials will be over and we will be in a place where there is no more pain. Revelation 21:4 ` ‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”

November 20 – Tuesday – Yesterday I woke to very little pain. I had my follow up visit with my urologist (saw him one month ago). Wasn’t looking forward to it because I know he keeps on insisting that I have a bladder cystoscopy (very painful) and I don’t want to to do it. BUT I, of course, went to him, and he said everything I thought he would say. So that was disappointing. He says any discomfort that warrants the use of a narcotic needs to be looked into seriously. Having said that though, he admits to only having 3 patients with IC. I will be seeing a world renowned IC doctor hopefully soon and we’ll see what he says. In any case, I moved through my day, drove for the 1st time in 5 weeks, ran some easy errands (all within 2 miles of one another). I was out for say 2 hours and dealing with pain on a scale of say a “5”. The pain came and went, and ALL DAY LONG I felt like I was full, even though I kept visiting the bathroom. Then suddenly at about 7:00 pm, that awful razor/needle pain attacked again. I was back to square one. Even though I thought tonight was the night I wouldn’t have to take a pain pill, I succumbed at 9:00. Even my bath didn’t soothe me as much as usual. I went to bed and cried in my husband’s arms. This morning the razors/needle are gone (most likely because the pain med is still floating around in my blood stream) but I’m not comfortable. Naturally, I’m deeply disappointed today.

November 19, Monday – Severe Pain – came back with a vengeance this evening. Don’t want to take pain medication, but have to.

November 18 Sunday – Entry #2 – Since it’s Sunday: I’ve spent an extended time alone with The Lord in my favorite quiet time spot (in front of the sunny window in my guest room). I’m reading again today from Jane Grayshon’s book A Harvest From Pain. I had remembered purchasing Jane’s book back in the early 90s and found it on my bookshelf. Back then I was suffering from some kind of bladder pain but it wasn’t this kind of pain and mercifully it went away. Back then I had read through some of Jane’s book I never finished it. So Today I finished her chapter on Rocky Pathway and found myself making lots of notes from it. On page 117 she writes how she is in the midst of deep prayer and she prays “show me your rest, Lord. If I can’t have rest from the pain, show me rest within it. Not somewhere else, but right where I am. On my pathway, my rocky pathway, show me Your joy.

She is reminded again of a conversation with a friend who lost a child. Her friend’s burning question to Jane, in the midst of the pain of having lost her tiny infant was “Do You Believe in The Goodness of God? And So thinking over that question, Jane now expresses to God “this pain isn’t what I want. I doesn’t seem like Your goodness. But yes, I do believe in Your goodness. Forgive me for tinkling you would offer a stone instead of bread.” If you’re not going to take the pain away from me, please help me to accept it. help me to reach out and receive whatever You give. Help me to see whatever You give as bread and not stones. Help me to feed on You, Lord. And show me Your freedom even if pain goes on and on . . . Those words from Jane’s book are where I find myself today.
Heal me Oh Lord and I will be healed, save me and I will be saved.

November 18 – Sunday -Well I started yesterday soooo encouraged, and it was such a beautiful autumn (warm day) I even went out for a 15 minute walk AND put on some makeup and Pard took me out to dinner. Very close to home, right around the corner actually. Had my usual bath, but was not as pain free as I usually feel after my Epsom Salt Bath. Just before falling asleep I had that stabbing razor like pain and wondered if I did too much yesterday. I guess that’s the hard thing about healing. You begin to feel a little like your old self, and so you do more of the things you love doing. It’s tough to measure how much or how little you should do. I had to sleep with my heating pad, and I’ve already told you I HATE being hot. So I had a bit of a rough night. Didn’t go to church AGAIN this week. I think this makes 5 weeks now. I know that God understands. Pastor Carl had church members lay hands on Pard and they lifted me up in prayer. Brought tears to my eyes. heal me Oh Lord and I will be healed.

Today the children are coming for lunch. Pard basically did all the food prep for lunch today I was able to help him some in the kitchen to prepare for that. Standing is the hardest part. He’s a good husband a loving Father and a good man. In a few minutes I’ll head to shower and get ready. It’s a beautiful Autumn day, a repeat of yesterday.

November 17 – Saturday – It’s 12:33 pm now (EST). Yesterday was a”good day”. I woke up with the awful “razors” cutting feeling in my ureter BUT that attack lasted (thankfully) only a few minutes. For most of the day I had none of that agonizing pain from a flare, but still battle with that feeling that I ALWAYS have to visit the bathroom. However, I felt good enough to do some organizing that I had wanted to do for a while. Those are the projects I’m mostly doing now. At home, quiet and peaceful kind of work which requires no physical labor, per se. And so … I felt a “measure” of pain during the day. It would mostly come and go. At 9:00 I had my usual bath with my epsom salts. One thing about me is that I don’t like to take baths. I like to get in, shower and get out. I don’t like “sitting” in water, especially hot water. I HATE being hot. BUT, these hot baths seem to help. And no wonder. Pelvic floor dysfunction is all about the muscles in that region of the body, and it is well know that Epsom Salts have wonderful benefits for soothing muscles. I left my bath about 9:45 and then relaxed until it was time to sleep. I slept in this morning until 10:30. When I woke up I felt no pain. I stayed pain free until about 1/2 hour after rising. Then that “fullness” like you always have to void begins. But still, it’s a good day. Each day it seems I have less and less pain. And of course my prayer is that it stays that way. Monday I have an appointment with my urologist, and we’ll see what he says. But I am encouraged today. I think I’ll go do another organizing project, but right now, I’m having my quiet time. I just took a bit of a break to post this before I forgot. Thank you Jesus that I had such a lovely evening.

November 14 – Wednesday – Today was basically a repeat of yesterday. 3.5 hours with NO PAIN. Every evening at about 9:00 I soak in a very hot tub. Hubby brought me some Epsom salts and I added some coconut oil, so the water was luscious! The hot bath helps soothe the pain. Keep Praying everyone. Don’t stop. God is listening. Time for bed now. It’s after 11:00. Love to all.

November 13 – Tuesday – When I woke up today I had NO PAIN! No burn. No urgency. No frequency. I was almost afraid to say it out loud. But I walked into my husband and said “honey it doesn’t hurt right now”. I was pain free for almost 3 hours today. I had a little twinge here and there, but by and large, the debilitating pain was gone. It is now about 4:30 pm and some symptoms have come back but I am thankful for almost 3 hours of “normal”. Normal for me is not having to visit the bathroom every 3-8 minutes. Keep praying. Thank you Lord, and thank you friends.

November 11 – Sunday – it’s always so strange that when I first wake up, I feel absolutely normal. BUT the moment I make my first visit to the bathroom the pain cycle seems to engage again. I usually feel the least amount of discomfort in the a.m. As the day wears on though the attacks become intermittent and sometimes that awful razor thing (which is what we call the “flare) erupts. We call it a flare because when it flares it literally feels like you are on fire inside and razors, needles or scissors are poking into your inside flesh. As I mentioned before, because of this searing pain, my urologist has now allowed me to take two Tylenol with codeine pills. So I usually will take the first one around 1:00 or so. That allows me to get through the afternoon and at least be able to get a couple of hours of work done. Nothing really takes the discomfort away totally, but it helps. The bottom line is that at this juncture, I’m beginning to learn how to live with long term chronic pain. It takes some careful management, some stamina, the willingness to work even while in pain, spending lots of time with The Lord and prayer. My day ends peacefully (usually between 9 and 10:00 p.m.) with my bath and a cup of tea, and one more pain pill to help me sleep so I don’t feel the “razors” as much. That is such a soothing time for me.

November 10 – Saturday – Today I had a “good day”. I actually had one full hour when I was in no pain at all. I got so excited I thought “its going away, its going away”. YAY! I had no urgency, no frequency, NO PAIN. I was talking with my friend Patti on the phone and exclaimed to her “Patti, I can’t feel any pain”. We were so excited. I even said I might go to church in the a.m. But around 9:00 the razors came back. But I’m hopeful because I had at lease one good hour. I also had a wonderful healing time with The Lord yesterday and he ministered to me in a very special way.

November 9 – Friday– Once again I had trouble sleeping last night … I didn’t get to sleep until 4:00. Unlike yesterday, I woke up this morning with “no razor pain”. But as the day wore on the “razor attacks” begin to creep in. With the doctors permission, I take two pain pills now. One at about 2:00 pm, which helps me to be able to work for at least a couple of hours in the afternoon. After about 3 hours it starts to wear off and then I’m back to having to rest, which means laying down. The hardest thing is standing. Anyone who knows me knows I love to cook and it’s hard to do that standing. So I do it in bits and pieces. But the bottom line is that things are pretty much the same. I’m taking it one day at a time and the plan now is to see another specialist to see if there is anything new in the treatment arena.

November 8 – Thursday – Had trouble sleeping last night. Woke up with “razors”. Hubby had to give me a full valium. I went back to bed and slept for two hours. I had been up til 2:00 so I needed the sleep. I got permission from my doctor yesterday to take my Tylenol with codeine twice a day now, instead of one. That means, that although I still feel the pain, it is significantly numbed and I can get at least a couple of hours of work done. I took my first one at 4:00 p.m. 2nd one at 9:00, along with my hot bath. Then I spent some special time with my husband. He misses me. He misses “us”.

November 7 – Wednesday – This was one of my worse days yet. My sister “happened” to call me after I had just gotten off the phone with my doctor. My conversation with my doctor was intense, and he basically was saying he couldn’t help me. I was in extreme physical pain at that point and hung up the phone and was just sobbing. It was at that point my sister called, just in time. She was a listening ear and we even ended up talking about one of our favorite topics, politics.

October 12 – November 6 2013 – Basically during this time I was hoping that I had a normal UTI (Urinary Tract Infection). After more than three weeks went by, I took myself to the doctor, had a urinalysis done and received the bad news “no infection”. No infection with UTI symptoms that don’t go away usually means Interstitial Cystitis. Oh Good Lord!

October 11 2012 – I was born in October, and I just LOVE everything about it, It is my absolute favorite time of the year, and so special to me for many reasons. This day, had all the promise of a beautiful crisp autumn day. The day dawned brightly with that familiar chill in the air that beckons you to open your box of sweaters that you promised yourself (last year) you’d have at the ready for such a day as this. Hubby and I had just days earlier returned from a wonderful Bermuda cruise with close friends, and I was enjoying splendid health. I was so pleased with myself that I hadn’t really gained any weight on our cruise. I attributed that to our new lifestyle of healthy whole food eating and taking exercise six days a week. Nothing is perfect in anyone’s world, but in our little corner of the globe, at this juncture, “life was good”.

I began moving through my day, with way too many things “to do” on my already too full list but that’s all part of being me. I am never bored, I never have enough time, and I’m always involved in something. I’ve learned the hard way that that’s seems to be the way I like things. I seem to do best with a few plates spinning at a time. But suddenly in the afternoon of that perfect Autumn Day my life came to a screeching halt!

I began to feel an awful cramping in my bladder and ureter area, and this was to become a “season of my life”. I was diagnosed with a very rare illness known as Interstitial Cystitis. It is chronic and I was told that there is presently no cure. It is excruciatingly painful and when it flares it feels as if one has razor blades cutting inside ones bladder. It leaves you absolutely unable to work, create or concentrate on even the simplest things. What used to take me 15 minutes to do would now take me 2 hours to do (if I could do it t all) simply because of the pain level.

The World of Pain is a private one. It’s one in which you feel enclosed in a different world. (Adapted from: Jane Grayshon’s book A Harvest From Pain).

“The human spirit will not even begin to try to surrender self-will as long as all seems to be well with it. Now error and sin both have this property, that the deeper they are the less their victim suspects their existence; they are masked evil. Pain is unmasked, unmistakable evil; every man knows that something is wrong when he is being hurt.” ― C.S. Lewis, The Problem of Pain.

“We regard God as an airman regards his parachute; it’s there for emergencies but he hopes he’ll never have to use it.” ― C.S. Lewis, The Problem of Pain

Interstitial Cystitis (IC) “flares” as we call them, come in waves. The severest of those waves can last for minutes, some for hours, days, weeks (as was my case) months, (as currently is my case) or even years, which I pray is not my case.  (Update as of 4.1.14 … it has now been 1.5 years that I am in this battle).Click here TO LEARN MORE about Pudendal Neuralgia or PNE


RESOURCES

COMFORT ~ SPIRITUAL / Music
Instrumental soft Piano Healing Music
Quiet Time With GOD
Soaking Piano Music
Deep Prayer Music
Instrumental Hymns

COMFORT ~ PHYSICAL

COMFORT ~ EMOTIONAL

INFORMATIONAL INFO
WHAT PN and/or PNE is all about
Health Unlocked (A health informational site)


DOCTORS WHO SPECIALIZE and/or OPERATE ON PNE

Dr. Aaron Filler: California (YouTube)
Dr. Michael Hibner: Omeha NE (YouTube)

images-2
Sufferers of IC/PN and/or PNE
Judy’s Youtube Video

1st/10.11.12

Leave a Reply