Forums:
I saw that in the past there have been some vent/hope threads? For those of you that want to participate, I was hoping to revisit. I guess it is similar to the "Little things positive" thread, but with the vent component which I so need as I am in my first week of treatment and feeling horrible and hopeless.
Vent: I started treatment and am off all supplements, including the Aloe Vera caps which I think were masking my symptoms. Dr. B has been tweeking my treatment all week. I have almost constant pain of the 5-7 variety and it makes it hard to concentrate and get things done and take care of my girls. My husband is travelling for work for the whole next week :( I really don't know how I am going to get through each day. I just want to crawl out of my skin most of the time.
My daughters are in Kindergarden and 2nd grade. The year started so beautifully, they were both finally in the same school and I was so enjoying my life as a teacher and home-maker. Then I got SLAMMED with this illness and my life just sucks. I can't enjoy anything right now and it feels like life is just going by me. All I can think about is my bladder. I don't get to eat out with my husband, cant even think about sex, cant exercise besides walk (I was a fitness instructor), don't get to teach anymore, can't drive my kids on field trips, can't drink wine (I was very moderate before IC). Can't have fruit, avocados, nuts or anything I was enjoying before.
Hope:
Dr. B's treatment has already gotten me off sleeping pills. I am struggling through the day but can go without pain meds so far or anti-anxiety meds which I had tried a couple of times. I can go for walks when the pain is not too bad. Dr. B said I can have one cup of coffee per day. I tried a 1/4 cup today and it did not seem to make things worse (although they are pretty bad right now) so at least I have that little ritual which I can hopefully add back in.
Hi Mimij
You're like me - you've got the vent down pat - it's the hope that's so much harder. So, let me do the hope for you? You're here, it sucks right now, but you have found a place where people actually heal. Granted, not always in the manner and time frame that we'd like to sign up for - I am still often pissed, scared, and kicking and screaming. However, I am one of the more diffictult cases. Not so much for the bladder/urethra pain, that was under control fairly quickly. Mine tends to be huge mental anxiety/paranoia, and fear from medical conditions that are far different from IC. So, please don't compare my time frame to yours. Sadly, for me, I have seen many people come and go through this site. Most of them sound as anxious and hopeless as you do. However, they've gotten better, you 'hear" it in there words - pretty soon their entries dwindle and you "hear" no more. I try to be happy for them - not envy their miracle too much. So, when I read your words, my heart knows that you'll get better too. I just pray for the same things for myself.
Vent- my days are so
Vent- my days are so unpredictable, I never know how I'm going to feel. My anxiety and panic attacks are controlling my life and that sucks. I get the weirdest symptoms in my body like weird feeling eyes, dizziness, weakness, muscle spasms and twitches. They all get worse when my anxiety is acting up.
Hope- I just found out that I don't have a hole in my heart like they thought.. Hallelujah! I can finally focus on Dr Bs treatment 100%. And I just started going to therapy which I think will help me a lot mentally.
Praying for a healthy body someday. I know this is the right place to be.
All of this is so hard.
All of this is so hard. Dealing with pain, worry, fear daily does begin to be a huge drag. I am grateful for my husband who has had the patience of a rock. Especially listening to my complaining and crying and dealing with the cost of everything I have tried so far to get better. I struggle with anxiety as well. I do believe that the body heals but it seems that it can be very slow. Keeping a positive frame of mind is tough too. I think the only thing to do is cherish the better days and just try to get through the bad ones. That seems to be working for me. Venting is good when people understand what you are going through. Most people have no idea what IC or bladder pain is like.
Denise, Lindsay, Samara...more vent/hope
Denise: Thanks for your post. I am sure I am asking a dumb question, but what has helped with your anxiety? I have used mediation in the past when I went through infertility and pregnancy loss. It helped alot at the time. I am trying to re-institute it, but it is harder now with two kiddos at home! Need to do it while they are in school and spend less time on the internet. Also, therapy and cognative behavioral therapy. I am going to take an anxiety managment class soon too. Is there one available near you?
Lindsay:
That is GREAT news about your heart. I had read about that and was worried for you (I am a good worrier, as you all can tell ;)
Samara, I am so sorry we are all going through this. I hope you can get some support here!!
Small vent:
I have to have another cystoscopy because my @#*Urogyn did not have the right biopsy tool and saw a small single polyp in my bladder so now she wants to go back and remove it. Dr. B said it might set me back a week but not to be concerned but of course I worry about flaring from the cysto, and of course I now have to wait 3 weeks to find out the status of this polyp!
My brand new dental implant is loose. Needs to be re-tightened. No worries, it only cost half the price of a #@* Car!!
Hope:
My pain was much reduced yesterday and Dr. B thinks we are on track for now. I finally had some symtom relief after 5 days of extremely distracting discomfort. I was able to enjoy a full cup of coffee today. It is the best thing I have had in 2 months!
(Ugh) edited to add my pain is up again today :( Hope for some relief soon. My husband is out of town and the pain is really bad. Can red leaf lettuce really do this? REally? That is the only thing new I added today!
If we don't excel at health, the only other option is disease.
Anxiety
Dear Mimij,
Dr. B has me on a ton of different things for the anxiety - I also go to therapy once a week - where I've learned that tapping can be quite helpful. I also go to reflexology (cleared by Dr B) once or twice a week. I take a walk twice a week in the morning with a neighbor, I get to the gym a couple of times a week. I bore my boyfriend/significant other, with constant need for reassurance. I practice breathing techniques, mindfullness, and I pray that one day I will learn not to use extreme fear as a coping mechanism. My therapist tells me that I'm working on retraining my brain - awfull hard work.
Hanging in there with you,
Mimij, I understand all
Mimij,
I understand all of your "can't" statements. I am right there with you. I can't do any of those things either. But I know I am on the right path with Dr. B. I'm eating healthier than I ever have, and I am taking probiotics and supplements that are giving strength to my body to heal instead of taking medications that mask the symptoms and add toxins to my body that only make things worse.
As hard as this path is, I believe that going the route of taking medications is even harder because there is no hope for healing there. I have been with Dr. B for 1 1/2 years (I've had IC for 12 years) and there are so many things that have improved for me physically, emotionally, and spiritually.
I have had a major breakthrough in regards to an immediate family member. I have always had a dysfunctional relationship with this person, and though this person hasn't changed, I am looking at the relationship in a whole new way. It's like my head is clear for the first time. My heart is healing along with my body. I can honestly say that I am thankful for this journey and where it is leading.
So my vent is that I'm frustrated at how long my body is taking to heal and how limited I am right now, but my hope is that this is producing in me a patience, perseverance, and love in my heart that I could never attain if I wasn't going through it.
Vent- I am itching like a
Vent- I am itching like a maniac
Hope- I feel that my emotional reactions ar so much more mature than they used to be. I attribute this to the balancing that goes on plus the spriitual and emotional work that IC has sort forced me to undertake. I am grateful everyday for so much inmy life!
Deir, I'm so sorry you are
Deir,
I'm so sorry you are suffering with the itching. Any pain or itching we feel in the vaginal/bladder area is so incredibly difficult! I have experienced the itching pretty intensely myself so I really sympathize with you! What is Dr. B saying about it?
Vent: I had a bad day yesterday with my bladder. I started Cod Liver Oil at the beginning of the week with absolutely no problem, then started having intermittent bladder burning, then yesterday it just burned all day. Matia advised that I reduce the amount yesterday and that helped. But I need to go back and try the original dose today. I really want to push through this and make progress. Everytime we add something new or increase something, I have die-off in the form of bladder and vaginal pain, but then I feel better and stronger once I get through it. The progress is sooooooooooooooo slow though!
Hope: I AM getting stronger
Lisa Ann How is the Cod Liver Oil going?
I am curious too about that concept of pushing through. I have only been on the protocol for 10 days, but I had trouble tolerating a full Mega so I went back to 1/2. On the full mega I would feel better after about 3 hours of horrible pain on the full mega. Part of me thinks maybe I should just live with the pain so I can get more probiotic in me. But I was finding it hard to concentrate on driving, etc... so Dr. B put me back at the 1/2 dose. So frustrating. I guess it is going to be like this for a while....
If we don't excel at health, the only other option is disease.
Pushing Through
Hey Mimi,
I was looking at some old posts and saw this one where I never answered your question about the Cod Liver Oil. Sorry about that! Dr. B just took out of my protocol today, so we'll see if my symptoms improve. I had a good couple of weeks, but I've been going through a rough patch for the last week and a half and it's getting to be intolerable.
When I'm not sure if I should "push through," I ask Dr. B. I let her know the severity of my symptoms and she lets me know what to do.
How are you doing with the Mega?
Hi Lisa Ann!
Thanks for posting! I am sorry you are struggling with the cod liver oil. I am sure you will go back to it as you have made so much progress in so many areas!
I am coasting along on my 1/2 Mega and 4 RPs 3x per day. She wants me to stay on it for a while to calm things down because I am so early in treatment. She also approved me for List 3, but the veggies only. So that is a positive. I have been able to make a wonderful roasted tomato sauce that I add to various meals. It goes great on pasta and I had it on fish the other night with feta cheese.
I appreciate how cautious she is with the protocol and I imagine she has learned not to push patients to quickly. There is a fine balance, to which I am sure you are well aware!!
VENT: My family was quietly griping/joking about my diet last night at Thanksgiving as they were having to prepare a few things separately for me. I got really upset. They got defensive and said they should be able to joke about it. My dad said "we are doing our best" (I guess he meant in trying to support me). But I got really hurt. If I have even one bite of yeast bread it will undo all of my efforts so far. I really don't know if they completely get it. I am fairly high-functioning in this illness so I think sometimes my family forgets how much I am suffering. And other than what I have told them, none has done any research on potentially how debilitating this illness could be for me if I don't do this treatment.
I am still so upset today I am going to write a family letter about my condition. It will not be an attack but I need to explain what I am going through. I don't care if they get uncomfortable. I am going to get this hurt off my chest.
Symptoms:
Achy feet, a return of heel pain I had 5 months ago. Achy right knee (old knee injury and also probably IC related). My acne is worse as I promised Dr. B I would cut my dosage of acne creams in half-she will be treating me for my acne eventually.. Nice deep pimples on my chin, which Dr. B said would clear (it is right on the bladder/kidney meridian). Bloated abdomen, look 4 months pregnant, especially in the evening. I would be alarmed but Dr. B says it is normal. Ugh. Can anyone comment on this???
I had a rocky few days of increased frequency around my period.
Hope:
I am sleeping 6-8 hours straight almost every night! What a gift! And the only "meds" I am taking is one magnesium cap. I think I can cut that down a little. I am having 1 or two good BMs every day.! In the late afternoon/evening I can go for 1.5 hours or 2 hours without peeing in the evening and my evening walk is much more comfortable but only when my bladder is empty.
If we don't excel at health, the only other option is disease.
MY mother was asking me if
MY mother was asking me if she should bring some cake for my birthday. I was speechless, I could not speak for 5 min. When I gain my consciousness, I asked her if she'd forgotten that I had no sugar for over a year. She said 'one piece would not hurt'. I was upset again. I don't know how to explain to my family what I am going through. Because I look relatively normal, even healthy, they tend to dismiss my limitations, pain, fears, doubts, struggles, etc., etc. At times I find it heartless but it is what it is. I don't like to dwell on it, but I had numerous conversations with people explaining how serious and grimm the prognosis was and what effort it takes to come out on the sunny side.
If you don't mind sharing your letter... may be I can reuse some of your thoughts. I would love to just cut in paste it (in their face.... i know I am being bad, i know). I am just tired of putting my heart and soul into explaining things to them. I need to separate from it and prefer to make it informative but not to invest much emotion into it.
Nadia and BLondy
Nadia, I LOVE your visits to the site. Do come whenever you can. Is that your fabulous website with all of the amazing pictures and recipes???? If you read this, thanks for the beautiful website. Let us know how your studies are coming. Thank you so much for your posts!!! They are extremely helpful!
Blondy, I will be happy to share my letter if/when I write it. I am still waiting for my nerves to settle before I write it. My husband and best friend were supportive. But would you believe, my husband absent-mindedly offered me a GLASS OF WINE????? I shot him the dirtiest look.
I am going to visit the hidden illness website too as I think there are some materials there. There are SO many people with hidden illnesses, and on top of that ours is so poorly understood. And our treatment path is unique in some ways (although not if you compare to some other chronic diseases like celiac)
If we don't excel at health, the only other option is disease.