Severe, Bleeding Ic

At times, making myself live life can be a challenge. My illnesses began during early ,childhood.  I cannot remember a day of not being medicated with prescriptions.  I have been diagnosed with rare immunity diseases which can cause anaphylaxis, burning flushing skin, hives, swelling, asthma, dangerous hypertension, inflammation, and in turn effect the bladder.  As the result of immunity issues, I have been told that the inside of my bladder attacks itself.  It causes stiffening pain;  often times, unbearable to walk.  Hospital staff have told me IC can be more painful than bladder cancer, just as life changing as dialysis.  Why then, isn't more being done for pain control?   

Frequently, my urine is dark, almost black, gross amounts, and clots of blood; so much blood it cannot be tested for infection.  It can back up into my kidneys, or I may risk bleeding to death.  During bouts of this agonizing pain or anaphylaxis,  I tend to have severe bouts of uncontrollable libel hypertension. At times, above 200/145 or even 220/195.  I have tried many hypertension medications and so far only one which is 1/16 of a compounded pediatric dose is safe for me and works.  I have had many hospital visits due to allergic reactions to more than a dozen other blood pressure medications.  Problem is, during either an allergic or bladder emergency, my hypertension increases. Many emergency teams want to treat the hypertension.  If i am passed out, i am unable to tell them i am allergic.  In fact, if the initial allergy or bladder could be treated, they hypertension automatically goes down.  Compounding medication is not a cost effective route.    Average $3,000 for the minimal medications I must take on a daily basis.  That is an unfair cost for anyone. Despite medical records and letters from Doctors, at this point, insurance refuses to pay for compounded medications.  Therefore, I am not taking medication to control my dangerous hypertension.  

Doctors are determined that my problem is IC and Allergies.  I wonder though,  do others with IC, even severe cases, occasionally wake up in a pool of blood? And I'm not talking about small amounts.  Running down your legs, blood.  This used to happen every few months. The last time I was dismissed from the Hospital,  I absolutely could not walk!  I was carried or in a wheelchair for two weeks.  Now, the strong bleeding is weeks apart.  I've had a hysterectomy.   Occasionally, I do have a severe infection on top of this, with shaking chills, fevers above 105.  Most of the time, I have no infection in the urine.  I have been Hospitalized many times, seem lots of Doctors, and- have completed every test they can think of.  So far, they are all in agreement, I do, in fact, have severe IC.

I am unable to tolerate many medications, foods, entire proteins, dyes, and other substances, including the excipients in many medications  due to a long history of severe allergies and anaphylaxis. I am even allergic to some of the medications used to treat anaphylaxis.  I have had vocal paralysis as the result of intubation from anaphylaxis ( freak reaction to IVP dye and latex). I am allergic to all maintenance drugs and anesthesia that can be used to treat IC.  Therefore, at this time, surgery is not an option either.  I am not a suitable candidate to have a device implanted into my spine to help relieve IC.  Or, forbid, have my bladder removed.  I am not able to take morphine.   It has been recommended, tried, and stopped by Hospital staff due to the allergic reaction it caused me.  Often, I curl up with a five or ten pound bag of ice to numb the pain as I cry myself to sleep.   

Healthcare providers tell me I shouldn't travel or walk more than necessary.  Yet, I am expected to drive frequently and keep many appointments and court scheduled visitation to take my son across the state to visit his father every other weekend. I miss putting a 100,000 miles a year on my convertible, taking road trips with my kids,  going to rock concerts, eating out, dancing all night, hiking or walking for miles, playing with watercolors, and yoga.

I have an outstanding Allergist who has spent hours at a time with me.  His patience and perseverance has most certainly saved my life.   Even at age 36, I have made every diet change necessary to benefit my health.  I have gone as far as to employ a dietician, replace every dish, cookware, and appliance in my kitchen.  A necessity, due to allergies.  Anaphylactic allergies that did not onset until adulthood!  I am often hungry .  I find it difficult to eat . I am 5'8" tall. I was a curvaceous  140 pounds and have dropped down to around 95 pounds.  Often, I am  nautious.  My Doctors now have me on formula in addition to what I can eat and keep down.

Travel for me is now painful.   I was once a Classical Pianist. I won and judged National competitions. At 17, I started my own business teaching Piano and Art lessons. I started the first organized Homeschool Art program in the Northwest part of Oklahoma. By the time I was 25 I had more than a 100 students.   I graduated with an Associate in Art.  I studied music, psychology, Astronomy, and American Sign Language. I almost graduated with a BFA in Watercolor and Drawing. I withdrew with only five classes left due to my illnesses.    

Currently,   have two beautiful home schooled children.  I have my own studio space which I go to when I have the energy.    Due to health issues, I primarily work with watercolors and paint miniatures.  It really bothers me that my mind is always busy, always working; my body simply won't keep up with what I want to accomplish. Usually,  I simply hang onto life rather than be bold, fearless, and active as I once was in life.   Which is why, I really make an effort to go to my studio at least once a week.  I love Art, Music, spending time with my family and friends.  I keep it because it makes me happy and more alive.  It does cost rent, but without it, I become so depressed,  this studio is my greatest therapy. Not just for me, but my children.  I welcome others to stop by and visit with me: )  This helps me during my most painful moments when  I feel incredibly dark and alone.  Someday I hope to travel again with my children and sell Art.   Doctor's told me to quit working.  That even the occasional Art Festival is dangerous for me because someone may touch me or my Art with something I am allergic too.  Honestly, I don't know what I am going to do.  .  .  One of the reasons I focused on Music and Art was because considering my health, I thought I could work here and there as my health allows.  It seems so cruel, that I am being asked to give up two of the things that make me feel most human.  

IC and allergic diseases is a sneaky, painful, disease. For me,  I may be up and moving one moment.  The next, it feels like I was struck.  I simply can't move. Even if I look fine.  It is often easy to fool others into thinking I'm okay, even when I'm not.  Or, in retrospect, people think I am healthy, even though I am suffering from a silent debilitating disease.  They think I am over reacting.   Sometimes, my boyfriend becomes upset because he feels responsible for my well being.  He hates Watching me suffer while Hospital staff tell him there is nothing they can do.  I feel guilty for putting him through such. He could choose any path in this world and yet he continues to be loyal to me and my children.  I am most afraid of how I affect him.  I worry that I may be his greatest downfall.  I am aging more quickly than I should and he deserves much better than me.   Granted, he and I have been best friends for almost five years now.  He knew me before this disease became a daily fight.  I know he loves me and wants to marry me.  I can't help but feel like he may not truly understand what he is putting himself into.  I find it difficult to explain to him- what I have is not going to get any better.  I love living in the woods.  I don't want to take Him away from his homestead, However, 911 doesn't always come if you live in an isolated area.  My Doctors in four opposite directions- i'm in the middle of the square.  I can't afford ongoing prescription expenses, and medical marijuana is available in another state along with specialized treatment for IC.   I am simply tired and feel like I've exhausted all my resources.   However, moving may not be the solution either.  What if I took my family away from home only to discover that It made no improvement.  I  feel trapped. He wants me to keep fighting.   But the going every day really deteriorates me.  Like I said, I look fine on the outside, but I bleed and swell and I really think he doesn't get it because I am still pretty : (

I like my current Doctors and Hospitals. They are outstanding about communicating with one another.  But I must say, I am somewhat of a challenge to them.  My last flare, nearly killed me.   I almost bleed to death.  My blood pressure has gotten as high as 220/190 from pain.  Other than, evaluate blood loss and test for infection, the Hospitals simply didn't know what to do. At least they are honest with me.  

After  I was unable to contact my  current Urologist, I called my Primary Doctor in tears.  They were trying and trying to get me in to see the proper Specialist.  With their persistence, they were finally able to get me into my regular Urologist. He did the cystoscope in his office without the anesthesia and could see the damaged lining of my bladder.  With this information, My Primary Doctor was able to get me in sooner to the IC Specialist. Instead of waiting until next year.  He confirmed it is indeed IC and  immunity diseases.  This IC Dr is regarded as one of the best in the Nation and he is stumped by me.  He promised he will not give up on me and will have to do further research.  He immediately asked me what he can offer me for pain relief and I told him I don't know.  I seem to be allergic to everything.  At least, pain control is a priority with him and he promised to get back with me after working with my Allergist.  

Since then, my current Urologist has started  frequent Bladder Instillations. This option is not cost efficient at a minimum of $300 each treatment. Some patients have this done three times a week.  This offers only temporary pain relief.   It is not fixing the problem.  Due to allergies, my instillation treatment must be customized.  For the first few hours, I feel sick to my stomach,  then I feel better.  This is when I try to eat.  Once it wears off,  I almost feel more sad, because I didn't realize how much pain I was in to begin  with.   My current Urologist is insistent that I need to be put on maintenance medication, but he also knows that there is no medication available to me in Oklahoma that I could tolerate as a maintenance medicine for IC.   He says that some have had their bladders removed but that isn't even an option for me.  I'm allergic to anesthesia.  IC patients already have a high suicide rate of 1 in 4 because they cannot live with the pain; even with Medication to help heal the bladder.  I can't even take maintenance medication.  And my Urologist says, I may just have to learn to live with  incredible pain until another option becomes available.  

I understand that marijuana is a controversial subject.   It is not legal in my home state.  However so,  I  have communicated with my local representative and Medical Marijuanna Campaign Advocates.  I would still like to advocate for it.   If I were to use MJ to control pain symptoms,  it would be a blessed relief from suffering and the constant  reminder that I am not physically well.  And, let's face it, How many MJ users are violent?  They are a peaceful bunch.  Also, at 105 pounds, the munchies would do me no harm.  Medical MJ is not there to get you high as a kite,  it is there for relief of pain and relaxation. And, as you know, when you are relaxed, pain lessens.  Which in turn, could lower my Severe, dangerous, libel hypertension.  Even with Medicare, Humana, and another supplemental insurance policy,  I spend thousands each month on medical expenses and compounded medications.  Medical marijuana would be much more cost efficient.  Due to obvious reasons, I am unable to work.  Praise God, I have outstanding insurance policies, medical staff, supportive friends, and family.  Doctors speculate that Marijuana may even help with the inflammation which could help with healing.  We need to change incorrect opinions.   What if marijuana could help me?  I HAVE TRIED AND EXHAUSTED ALL CURRENT OPTIONS TO TREAT MY CONDITION.  Without some form of maintenance medication or pain relief, my quality of life will drastically spiral downward.   I strongly encourage others to petition and advocate for all qualifying Oklahomans to have a legal right to Medical Marijuana
Disenchantedangel Disenchantedangel
36-40, F
1 Response May 14, 2012

I feel for you. I too, lost my life to IC. I am in remission now but not until it took my job, my home and many of my friends. It took me 3 years to get diagnosed and although I have a website I still get sneers from many people when I mention my disease. I hope there eventually will be a cure, but, in the meantime, I wish for remission for all. Teresa Linton