Hello to all!
I've been doing Matia's treatment since June 2008. It's been hard and hard and hard, lonely, and most of the time, I just didn't know if I was ever going to get better, even just a little better!
But I am, *a little* better. There are little things, little signs, that show me that my body will recover from IC. Most of the people who recover don't turn back to show us how bright it is on the other side and I do not blame them, in fact, I am looking forward forgetting about this illness all together too :-)
So I'm creating a place where we can all write down our *little signs* that give us hope and joy. Please keep this thread positive as I'd like it to be a place where people can rest from all the questions, worries and fears that darken our journey towards health.
So I'll start:
I'm thankful for the full night of rest I've had last night, after such a long period of getting up 5-8 times!! And I'm thankful that I could forget about my bladder for the first few hours, today.
I'm thankful for the 50 minute walk I took yesterday morning, I didn't have any urgency (usually, I have to stop at least once) and could enjoy nature, the sky, the fallen leaves, the ducks and swans, the river, the joggers and cyclists, couples, parents and children. It felt like I was part of the world again :-)
I'm really so thankful...
Enjoy Ballerine that is something to celebrate!
Kriste
Thanks to all for joining in! I'm so happy we are experiencing more and more little signs of improvement.
I'm sleeping so much better and I feel like this is a turnaround since I can finally start recuperating better during the night. I have such dark circles around my eyes, my bf told me they got a little lighter... That's great but I didn't really notice myself yet. (But I tend to check everything with a magnifying mirror lol)
Oh, another great thing: I can have black tea again. I tried it and it's fine. I'm so happy!!!
Just a short note. I did not get up to go to the bathroom last night!!!!!!!!!!!!!!!!!!!!!!!! Just the other day I was saying to my husband that I don't think that this was possible. I can't remember how long it has been since I did not have to go to the bathroom at night. What is wierd is that I had about a three hour episode during the day where my bladder was acting up and my days are usually better but oh well. Now if I could just deal with my husband's snoring because that woke me up!!!!!!!!!!! Any suggestions? I am sure that I will still be getting up at night to go to the bathroom but this was sure encouraging and showed me that it is possible yahooooooo.
kriste
Hooray! Congrats, Kriste. I DO know the delight of sleeping through the night. It happened for me once a month ago and it was wonderful. HOPE!!! Regarding snoring, the "Breathe Right" nose strips work well most of the time with my man and he is a BIG snorer...crazy making!
I had a major flare yesterday for several hours (realized it used to be days) but it was really baaad and I can't figure the cause. Has anyone the experience of flaring with just a couple of mouthfuls of coffee (good organic stuff)? olive oil? (not extra virgin)?
I've been thinking about what my little things are for a couple of weeks. I've been in treatment since February 2005 and have experienced a lot of the little things along the way. One of the most amazing things for me is that I'm a morning person for the first time in my life! Even as a child I would have the hardest time waking up and getting going, now most mornings I wake up naturally and my head is clear. Also I have warm hands and feet, not all the time but it's improving. Sometimes my hands are so warm that they're pink, never had that before, it's nice. I am able to ride my bike without having my hands go numb from what I suspect is inflammation related, this numbness is something I've been trying to sort out for many years, and it didn't occur to me that it was related to my IC. I don't feel so anxious all the time which allows me to be a kinder, more compassionate person. I am able to express my emotions better and don't hold things in all the time, that is a big step for me. These are all things that have slowly revealed themselves to me over time. Though I am still in treatment, I feel more healthy and vibrant than I've ever felt my entire life and when I go to bed at night, I look forward to waking up the next day. For that I have never-ending gratitude :)
Carol
Yes! This is a wonderfgul idea..thank you Ballerine and all the others who are contributing. It's been a rough few days, BUT this morning I awoke, thankful for getting up only once in the night..what a difference that makes to restful sleep!.
I CELEBRATE a normal bm (first since stopping a fibre supplement)...how uplifting and funny at the same time!
I am amazed and grateful that I didn't catch a flu virus that was rampant through my house and family (Matia said I would be surprised at how my immune system was strengthening and she was right..as always)
Readng the gratitude notes are such a gift..let's keep this open.. (in treatment for 3 mos)
3 years ago (November) I had booked a Christmas vacation to Europe for my husband, my 2 children and I. My younger one (who is now almost 10 years old) wanted to go to the top of the Eifel Tower in Paris France. I had promised him I would take him there all the way to the top. Just 4 weeks before the scheduled date to go on the trip I got ill with IC. I became very ill in a very a short time and we had to cancel the trip. Life sure became difficult for everyone here in the family. Within 3 months I found Dr Matia and started the treatment with her. The road was long and hard but worth it every step! So I understand the little tiny improvements very well. Keep going, never stop! Like I wrote before, it took me a little over 2 years to see more good days than bad. I have been in treatment now since 2 years and 9 months and I am doing great, I have made more improvement. (still have a little to go but have a normal life again). I go to school again and have a full life. I feel strong and have lots of energy again.
This year June I had to travel to Europe (my family lives there), my father was ill
I bought a ticket and went. I had not been back there for 6 years. I saw my grandmother who is 88. I saw my aunts and uncles, my cousins, and some old neighbors
They all said I look so good and healthy.
This year Christmas 2008, my husband the children and I are going to Europe. I promised my younger one to take him to the top of the Eifel Tower 3 years ago....This Christmas I am taking him to the top of the Eifel Tower, we are leaving December 20. We will also visit my family there; my parents live in The Netherlands(we will be taking the train from Paris to The Netherlands). These days I have been traveling other places too. I could not have done this even just 1 year ago. Life is good again. Life is worth living again. It took time to become ill. It takes time to get better. Hang in there; you will see you are getting better and better, slowly but surley.
Angela.
This post made me weep. I'm so happy that you will be able to do this with your family and that you are feeling so much better. I have been in treatment for only 3 weeks. These stories mean so much to me. Thank you all for taking the time to share your stories with those of us just starting out who are in need of a glimpse of light at the end of the tunnel!
Tammy
This is a great idea! I started with Matia in late May 2008. Since that time I have been back and forth on the scale in how I have felt. I'm sure everyone can relate. howeve slowly but surely I notice I am having more good days creeping in where my pain levels are much lower and if I do get a flare they usually end within 2 days or sometimes a few hours. Its been weeks since I had the swollen bladder bowling ball sensation. I sleep through the night without getting up to urinate and my insomnia is getting better. My digestion is improving and I can take walks with my dog without any trouble. I have not had any anxiety attacks this month and my nervous system is feeling stronger. My brain fog is getting better- memory recall and comprehension is sharper though not my spelling and grammar! My moontime(menstral cycle) is still out of control but I think its getting better. ( at least there are some changes). My bowels still need alot of work but they were pretty messed up. There has been improvement there too. I am working on increasing my bladder's tolerance of the probiotic which is moving really really slowly but it is happening.The depression is alot better and I feel like my energy is improving. I have no dizziness whatsoever and that was a horrible problem for me in the beginning. I've been having dreams that reflect my bodies cleansing process at work. I am really encouraged! There is still so much to do and heal but these changes are very encouraging. I work so hard at this! Congratulations to all who are experiencing positive changes in their condition! Thanks for your support and for reading!
Mary
These "little" things are so wonderful! They are actually HUGE things! I have been working with Matia for about 3 years and I am feeling great (but with still more work to do). I remember when I first started treatment, I felt so much pain and sadness and depression. All I wanted was for the pain to stop. But as treatment went on, I'd notice something that I was able to do that I couldn't do before - like SLEEP!! And WALKING!! Same as you!! I could barely go anywhere b/c just sitting in the car was so painful, nevermind walking. So being able to walk without terrible pain was a good sign I could get better. Sleeping was amazing after so many nights of being wrenched out of sleep by the pain. When I started sleeping better, I believe that my body was able to really start healing. Then later, something so great...I was able to go dancing again!! My husband and I love to dance and people watch at the clubs (not with the teeny boppers, we go to "mature people" clubs lol). When I could dance again, I felt so hopeful that I could get my health, and my life, back. And then, the absolute "proof" that I could be normal again - I was able to travel. I was able to go to Italy for 10 days last summer. Airplanes, walking, cabs, buses, trains, sight-seeing, visiting family, being a bridesmaid in my cousins wedding...you name it I did it with almost no pain most of the trip! I NEVER IN A MILLION YEARS thought I would be able to do something like that when I first started treatment. I still am amazed at how far I've come and how much of my health and life I have back. And it does come back. It's so slow tho so you have to hang in there and just keep doing what you doing. Remember, the small things are actually very, very big and wonderful! And you ARE getting better so never stop, never give up!!
What a wonderful idea. I have been in treatment since May, 2008. I do have things that I am thankful for. I too recently went for a walk by the river in my neighborhood with my husband and went for a cup of black tea. This is something that we used to do quite often and had not been able to do since I got sick. It used to be a run and a cup of coffee but that is okay that it was a walk and a cup of tea. I know that I will get to the point of being able to run along that path and go for a coffee again. For now it was nice to get back to getting out on that path and going to a coffee shop and feeling like a person again.
Kriste
Love all your stories!
Just wanted to add that I can go on LIST 2!!
yay!