Losing Faith...

[Lori1975]

Greetings all. I am hoping someone can help restore some of the faith I have lost after suffering a moderate to severe condition of I.C. I have had it three years now and have been unable to work, get medical insurance, still pending disability after being turned down twice, and have tried numerous treatments all that have given little to no help.

I really feel I.C. has ruined my life as I am in constant pain and have been house bound for over two years. I have had over 8 months of physical therapy, many bladder installations, numerous medications, acupuncture, cytoscopy with hydro-distention (which was done only to diagnose me because it caused extreme pain) and a diet change. With the lack of funds, support, and constant pain I feel like I am losing my mind. I have severe anxiety, depression, acid reflux, vulvodynia, and hypothyroid all on top of my Interstitial Cystitis. I am completely isolated with only the means of reading, watching TV, and talking on the computer as means of entertainment.

Here I am with a masters degree, 35 and wasting away in a bed. How can you not hate your body or become angry at a higher power for having to suffer a life not lived! It seems so unfair...what did I do to deserve this?! Why can't I get relief? Why am I treated like a drug addict when I tell a urologist that I have tried all these therapies with little effect and need something to help me get out of bed? I am told I should go to a pain management clinic...which I can't afford of course. I am humiliated to ask a doctor in the first place for pain medication...they don't have to come out and say you need a rehab (or pain management clinic) to help you. Well I am here to say I don't want to be on pain medication...I want a new bladder...mine is wrecked..unrepairable. And nobody will help me to actually GET BETTER. I can't stop crying even typing this. I just feel so hopeless.

I am currently taking klonapin .5 mg twice a day or as needed. (anxiety)
Lamictal 150 mg daily for Depression
Diazepam (valium) 5 mg 1-3 times daily for vaginal pain
Trazodone 50 mg a day for anxiety/insomnia
Lansoprazole 30 mg for acid reflux
Prelief for acid stomach
Just started Oxycontin CR 10 mg every 12 hours for I.C. pain
Tens unit 40 minutes a day

Bladder installations have varied using mixtures of sodium bicarb, elmiron, lidocain, heprin, DMSO, and more.

Just started Restorative Yoga...which is great. A lot of meditation, guided imagery, restorative postures, gentle stretches, centering, and other relaxation techniques. Highly recommend after going once.

[shellyns71]

Hi I am shelley from Wi!

Hi. I am so sorry you are not doing well. I just went through a bad flare. I am going to see a new ur next month in mnneapolis. I can only tell you what i take. 2 are prescriptions...elmiron and enablex. Herbal i take aloe pill (just started) colostrum (is thought to maybe help coat intestines and bladder) I drink marshmellow root tea with organic honey. kind of soothing. I take kidney blend sp-6 with cornsilk homeopathic bladder r-17 for bladder discomfort and weak bladder and astaxanthin for inflammatory. the last 3 i just started. I have had 4 dmso treatments first 2 were great was like a new woman last 2 now not so good. i try to eat healthy but sometimes i crack. like today i had 2 beers and 4 cookies. I am about at a 2 on 1-10 scale at moment. last 2 weeks was about a 7. I am 39 and live in northern wi. I have family in AZ, AK, MN so we are a bit spread out. If you ever need an [email protected] is my email. I have had this for about 6 years but only diagnosed 2 years ago. Sleep tight! shelley

[suzannes]

Lori,

I too get so angry at times and think why me? I was always so healthy, ate clean and exercised. I pray everyday that God will help all of us to cope with condition.

Suzanne

[shaun10]

I am also totally disgusted by this disease. Its one of those "why me" type of things and it sucks and its awful. but it also isnt something worse like cancer so we cam at least be thankful for that. I am getting no relief and its gettting harder to report to work everyday, but im hoping the doc and i can come to some kind of different tratment options at my next appt like installations or another hydrodistension

[bob04951]

Lori
Wow...so sorry you are going through this. Have you spoken with social services at your local hospital or your county or state? There are sometimes programs for those of us with no insurance who cannot afford insurance but do not qualify for caid, we slip into the cracks sometimes. There is usually some type of assistance. Check into it if you already haven't. Cry, beg do whatever you have to to get some assistance. Don't be afraid of those pain meds, they can sometimes give you a new life. And you can get off of them when you no longer need them.
At this stage of your life with such a promising future it is discouraging to say the least, but maybe this is just a flare and it will ease off. Really, really sorry you are feeling so bad, but you may wake up tomorrow and feel a little better. The bad days are bad, but the good days are REALLY good. Take care, and glad to see you are on some antidepressants, and if they are not working for you tell your doc. There are a gazillion of them out there, you have to find the right ones. Take care. Jill, wife of Bob

[ICNDonna]

If there's a free clinic in your area, they may be able to help you see a pain management specialist. In the area where I live it can take a while to get an appointment unless it's an emergency, but better than not having care available at all. You may also be eligible for some state assistance. There are also some drug assistance programs if you qualify.

I hope you find some answers and feel better soon.

Donna

[passion4life]

Truly Understand

After reading your post, I had to pause for a moment before posting my reply. I truly understand your sense of loss, anxiety, and anger. This disease is baffling. We seem misunderstood or not adequately cared for by society.


However, I have found my Light and Freedom during my most difficult times. Continue to fight for your right to have adequate treatment and your disability. I truly believe as you continue to seek, Truth and Solutions will light your path.


I believe it is OK to be angry at your Higher Power. However, I had to take it one step farther and tell my Higher Power I was angry and why. This has been done under the guidance of a counselor. The more I open up and express my true feelings, the more I find relief and peace.

So sorry you had to post but so happy you found a place to share.

Hang in there and have the best day you possibly can.

Praying for the cure

[Lori1975]

Thank you all!

I cried listening to everyone's support. How alone I feel...so misunderstood by people who have never had this struggle...I am so blessed to have found this website where you can get support from people who understand and with such a wealth of I.C. information such as treatments, products, and resources.

Unfortunately Wisconsin is a difficult place to get health insurance. I am on a waiting list for Badger Care...but nobody knows how long the wait will be. I have found a hospital charity that will cover the cost of seeing a urogynecologist. It is just that they don't like to give out pain medication. I will look into a pain management clinic it is just my pride that takes a hit. I feel like I am signing up for a rehab or it feels like I am being referred there because the doctors don't believe how great my pain is. I don't ever want to become dependent on them it is just a need until I am able to get other treatments in place. Having suffered for 3 years with no remission makes me want to have surgery where they take part of your intestine and use it as your bladder. I just feel at this point that my bladder is unrepairable. I brought that up to the doctor and they wont do it. She insisted on trying Medtronic InterStim or Sacral nerve stimulation first. Well the procedure is about 30, 000 dollars so I don't see that happening anytime soon but hopefully eventually I will try that and let everyone know how it goes.

If anyone has had this procedure please let me know about your experience.

Thank you so much for all of your feedback. I will try everything suggested. And I wish you all the best life has to offer. And thank you Shelly from WI for giving me your personal email...we all can never have too many friends

[shellyns71]

Hi again. Well you definitely aren't alone! Don't ever feel you are even though it is really hard. Last night I felt ok now today is total crap! Trying to figure out what I did. I had a Zone almond and raisen bar for breakfast could that be it or the one cookie I snuck? I take prelief like crazy and drink plenty of water. So who knows! If you need to vent though it sure seems like there are plenty of us here knowing what you are going through. my husband is even frustrated. Does anyone ever have their urine smell really strong and not very pleasant? last time it was really bad and i ended up having a bad bladder infection. I just got off meds again about 5 days ago and now I am starting to smell that same smell just not every time. Plus the urgency! omg!

[Snowden1]

Lori,
Looking at your post tonight, I could have written it. Including finally getting my Master's and paying a ton for it (that I am still paying) and not being able to get out of the house. I totally get it. I don't understand about flares because my IC pain hasn't ever taken a day off since I got it. Some days are just less than others.

There are some people on here under the bladder removal section who have had the surgery you are talking about. You could look at their past posts and PM them if you had more specific questions. I know that I think about this every single day too.

Does the TENS unit help you at all? I know mine does. I keep it on all day. I find when I don't have it on the pain is much worse.

[Lori1975]

Snowden1,

Thanks for your feedback. I know what you mean about the constant pain. It is hard to tell if there is a distinctive "Flare". I feel like my bladder is always inflamed because of the constant pressure I feel. Some days are a little better than others moderate to severe; rarely mild but never gone.

The TENS unit does help while I am using it. After use I am back to pain. But any relief is worth it so I highly recommend it. You can get them over the internet for cheaper than you can get at a Walmart or Target (if that is in your area) and though it takes a little longer to get, you don't have to leave your house.

The other challenge I have and I don't know how many others suffer this challenge but because I am unable to get out of the house and move much I haven't been able to exercise. My body is becoming weaker and I've gained a lot of weight. The muscle relaxer, pain med and anxiety/insomnia pill I take doesn't help but it is the only way I can even get any sleep. I stick to foods most of the time that know I can have but being able to get up and cook a meal is hard. Sandwiches a few veggies and cereal is about what my diet consists of these days...so all of these things hinder my ability to get better. I am trying to get out like for acupuncture, bladder instills, seeing a therapist, and attending my restorative yoga, but that is all I can muster up, not to mention I have to somewhat keep my house livable.

Life is just so hard and so unfair. Every moment is a constant fight to live life. Three years with this and my spirit is breaking and my hope diminishing. I only pray that I get insurance soon so I can have more aggressive therapy. I may try the InterStim procedure next and if that doesn't work I am going to beg for a new bladder made out of my intestine. My prayers are with you and everyone else who suffers from this nightmare of a disease.

[Snowden1]

Lori,
Again, I can't believe how similiar we are. I bought my TENS on Amazon.com and I have about 5 of them now. They break or I have dropped them ect. Have you tried leaving yours on longer? This helps me. I even wear mine to bed now to help cut down on the pain. (Not sure if your suppose to do this, but pain makes me do many different things).

My body has also become extremely weak. I have the opposite issue here of losing too much weight. I can barely eat anything without pressure and pain from my bowels moving. I currently have "frozen shoulder in my left arm." It really hurts too. I am going to have to move it more. I ask the dr what causes it and he said sometimes being ill, being in bed, not moving enough. Well that's me. It never used to be, but I have days upon days of curling up in a ball in bed in tears. So, I now need to excercise my arms more. It is also starting in the other arm so I want to try to stop the process.

I would really research the interstim. Do you have mostly pain or frequency or both? I agree, I am also actively looking into bladder removal. I wish there were more statistics out there of how many are helped by this surgery and how many develop complications. At this point, I would just be happy to have my life back - even if it is only for a short time.

I am so tired of this constant battle. Not only that my mother is so unsupportive and doesn't understand my pain. She thinks its mostly in my head. She can't be supportive and kind. Just bossy and constantly questioning what I am doing. She doesn't believe something can't be cured and that is more just me making a mountain out of a mole hill. She says she has pain too, comparing this all the time to arthritis etc. I have said that this is like end of stage cancer pain, but it doesn't register. Ugh..... What to do when this is your only family (besides my very overworked hubby).

[Lori1975]

Teresa,

I left a very long private message discussing these topics. I hope you got them because this site logged me off when I tried sending it. I understand all to well what you are going through.

I have urgency, frequency, and retention. I empty about 25 % of my bladder. I have to bend over and push to get more out. I take about 1 pyradium almost everyday just so I don't cramp up when I go to the bathroom. I am hoping when I am able to get insurance that I can have the procedure InterStim done. It is the last thing I will have done before I try bladder removal.

As for the situation with your mother...oh I feel your pain! I have to live with mine...since I dont have a boyfriend or family of my own. She has to work to support the both of us and resents every moment I can't help out with bills because I can't work. It isn't as if I don't already feel like a failure and that I beat myself up 24 hours a day for having this disease, but she has to be mad at me on top of that. I have had to give up friendships because they couldn't understand and wanted me to go out drinking and dancing. They would try to guilt me and pressure me into going out when I couldn't. I had to get rid of those friends...but when it is family...you don't really have that luxuary. You have to deal with the hand you are dealt. All I can say is that you need to distance yourself from the family members who are unsupportive because the last thing you need is the stress of someone not accepting you the way you are. It is hard enough for us to accept ourselves the way we are and the life we now have to live. Hang in there.

Lori

[Snowden1]

Hi Lori,
Has your dr. agreed to do the bladder removal for you if you try the interstim and it fails?

[Lori1975]

She said she doesn't do that type of surgery. She gave me the name of someone who does however he never returned my phone call once I mentioned I didn't have insurance; so I may not go to him anyways. There is a huge hospital called the Mayo Clinc that pretty much does everything but again I might have to wait till i get medical insurance. I so want to go to a different state! This state...although we pay high taxes here has no insurance for single woman between the ages of 26-65. I am on a waiting list but so are people who have cancer. How they can get away with this I don't know.

My doctor will refer me to someone who does the procedure if InterStim doesn't work.