NO one knows what they are doing at the GI Department in the Bend Memorial Clinic.  Seriously, it is so screwed up.  Applied for Cimiza Assistance end of October, told I would be called in a couple of weeks.  3 months later after begging for answer was told it was approved that they would call me last Friday to schedule shipment.  All of this after being rejected for Stellara Drug Trial due to living issues caused by Humira. All the while I am dealing with the same incompetent person at the Clinic.  I was directly told by my Coverage that they would not cover Cimzia and to apply for assistance. My drug coverage for a year is $2,500, not even a half a dose of Cimzia.  This person at the Doctors office assured me I was covered and my copay was $25.00.  Today I finally get a call from Cimzia and I was never even processed for assistance but ran through someones insurance the end of October by the Doctors Office that covered me with a $25.00 copay.  Not my insurance.  Furthermore they talked to someone at my Insurance who said I was covered.  If I want to continue to try and get Cimzia 3 months later, I have to figure out on my own if my liver is healthy enough and then apply.  Phew, am I mad, disgusted, not surprised because at the Gastroenterology Department at BMC they don't treat you like they really want to be bothered to help you get better.  This isn't an isolated event, this is how they function and it's literally pathetic!

I am pretty sure I have a hernia.  It's not uncommon for Crohn's patients to get hernias even women.  Lower right groin is constantly throbbing in pain.  I will have to go into my doctor and have this check out.  If all this new medication idea doesn't work out, I will have to see a pain management doctor.  I couldn't fall asleep last night because of the pain and awoke early because of the pain.  It hurts to get up from the chair or sit down.  Step, stand for any period of time and walk for that matter.  I never thought I would be sickly, I guess no one ever does.  One day you are well and the next day your whole life could change in an instant.  You can think you have life by the horns and everything is going great and boom, it's different for the rest of your life.  Your freedom from being healthy can change in an instant and no matter how hard to you work at making it better some things just can't be changed and accepting that can be a very long, hard and painful process.  No one wants to give up or give in to the fact that their life isn't going to get better.

Sick and tired of being sick and tired.  Against my better judgement I pursued getting an answer from the nurse of my GI doctor.  She admittedly didn't do anything with the request for Cimzia assistance in October, never called back in November, never called back last week.  So I pursued it with a vengeance this week.  My insurance said it was so expensive they wouldn't even cover a half a dose.  She did call back and say I was approved, that tomorrow I would get a call from them (Cimzia Assistance).  The first dose should come in about 2 weeks. It's an injection/sub cutaneous shot.  Two the first day, then again at week 1, 2 and 4.  The first month is around 24,000.00.  No wonder my insurance won't cover it.  I asked if anyone else is on it, unlike what she told me in October, they only have one other patient.  Everyone else is using other medications.  I know of someone who tried it and had an allergic reaction and had to stop.  It does contain mouse protein which worries me.  I have super bad allergies and premedicated for Remicade which also was made of mouse protein.  I probably will premedicate myself for this too.  I asked about my liver issues, I swear it's like talking to a wall with her, she had no idea and so I told her last time I saw him he wanted me to have a biopsy done since my liver was so ill, I would not be comfortable going back on any biologicals without having my liver checked. So I will do it myself by going to my Family Doctor and having him send the results to my GI and check with my GI before taking. As much as I really need help, I want to live through taking the medications. It does me no good if I die from liver failure.  My worry is if I don't do something other than treating the pain and bowel problems the inflammation and fistulas will grow and become a bigger problem the longer they fester.  It really feels like I'm doctoring myself in some sense, no one at that clinic is looking out for my best interests.  So we will see, one step at a time.  If my liver is okay and the Cimzia doesn't work, I will ask to go back on the Drug Trial of Stellara or search Portland for a Drug Trial to join.  I cannot keep living in this pain and put my family through this distress.  Life is passing me by and is way too short to lose this much of my life to this disease.  If I try and all fails, at least I have tried. 

Seriously if you live here in Central Oregon you are screwed as far as getting good GI care.  It's embarrassing how really bad it is and the lack of caring involved.  I called Friday to check on my Cimzia Medication to see if it had been approved and like I said previously when I was there in October they never even sent the request in.  No wonder when I called a couple weeks later they never called me back.  All of this lovely care is being presented to me by Bend Memorial Clinic.  Now here I sit and no one has called me back.  If I request to see a doctor to get the answer it will be a four month wait to get in.   If we could sell our house and move to get better care elsewhere we would.  Unfortunately, with 16% unemployment and foreclosures sitting empty all around us, that isn't possible.  Now I'm not saying all care at Bend Memorial Clinic is awful, just for me at the GI Department it is and has been.  My Primary Care Doctor is wonderful!  He is now attached to St Charles and I am thankful to at least have that.  My coverage only lets me see local doctors. If I had the money I would drive the 200 or so miles and go to Portland, unfortunately I don't and I don't know how practical that would be anyway,.  So if you live somewhere and you can get in within a weeks time to your GI be thankful, if they call you back within two to three days be thankful as that is not the norm everywhere. It is really tough to be this sick and have that type of care.  I am not alone, I have spoken to several people who feel the same way and have experienced the same care.  There is only one GI other than at the clinic to see and I got a second opinion from him once.  My friend is going to see him today, so I might consider trying him.  That would be my only other choice for this area. He's not friendly, no bedside manners and doesn't really listen in my humble opinion, but maybe I don't need that?

Up early and up late, the pain in my gut is just too much to even sleep through.  I will just try and keep busy and get myself through it although it is hard to do.  I am very close to giving in and trying another nasty drug in the hope of getting some or even any relief.  This is getting extremely tough and old as you can imagine.  Made a phone call to my mother and had to abruptly hang up to run to the restroom.  So that's my day so far, not fun, never is and not changing or getting better. 

So I decided to call my GI about Cimzia.  The end of last October they were supposed to get me set up to receive Cimzia.  In November I called to check on the status and they promised to call me back.  Since it's January and I hadn't heard, I thought I would call. I am getting desperate enough to consider taking it if my liver is functioning okay now.  Of course, they were supposed to call me back a couple of hours ago.  Welcome to Horrible GI care in Central Oregon!

I am so cranky from being miserable and in pain that if someone where to look at me wrong I would snap their head off.  I feel cranky too.  My poor hubby! LOL!  But you can only stand so much and when the pain won't subside it's miserable.  The pain pills are barely putting a dent into it.  It's the lower right abdominal pain and then horrendous pain all night and off/on toilet.  When you put in hard nights, the hard days that follow become harder to take. So what am I saying, I'm miserable and cranky. I guess that's better than crying.

Wow the pain really set in late this afternoon and continued to get worse than better. I basically went to bed and took as many pain medications as I could, heating pad and just cried.  It literally hurt to even move.  Funny thing is that when I hurt that much the pain medications don't even feel like they are affecting me.  How are we expected to live day after day, night after night going through this excruciating pain.  I was very careful today with what I ate, some soup (liquid only), egg salad (no bread), a banana.   Nothing hard, harsh or irritating.   At the moment the pain is manageable as long as I am still.  What the heck, I mean really?  I only wish health for everyone reading this as really that is the most important thing in life.

After speaking with someone who is in a Stem Cell Trial for Crohn's Disease, I did a little research and it's a very exciting prospect for me to think about.  I love the idea of using my own blood cells to produce a type of cell that can reduce my disease.  For myself, I would feel more comfortable in taking something that my body already produces versus a biological with a million and one terrible side effects.  However, it is not without risks as I am reading and without warnings, some to me seem severe.  I am still interested in more information and I am going to keep my eyes peeled for a Trial that I can join, maybe there is hope yet.

Twitter is a great place to meet other Crohnies as we call them.  Just type in Crohnies and you will meet tons and tons of nice individuals all on there for the same reason.  We want to connect, chat with others going through the same disease.  Many have tried the same medications or have stories, suggestions to give.  Many are just there to give you a word of encouragement.  I personally like it better than facebook.  People from all over the world connecting.  Perfect strangers asking me how I'm doing and really meaning it.  If you haven't tried it, give it a shot. You might find a connection that makes you feel less alone.  No matter what your reason may be for reaching out.  There's always others there to connect with.

It was so bad this morning I was crying and whaling and my husband knocked on the bathroom door to see if he could help me and I told him there was nothing he could do.  A pain pill followed immediately after.   So to everyone who reads this Happy Friday, I guess.

My doctor used to ask me if my symptoms kept me from sleeping and I remember it was early into my disease and as miserable as I felt then I was appalled to even think that could happen.  Now it's a regular thing and included but not limited to last night. Just plain miserable and off to the restroom more times than I can count.  Only to awake to the same this morning if not worse if that's possible.  So I am going to muster up the strength to make it through today, no matter how horrible I really do feel.

My glands in my neck and swollen and hurt.   I generally don't feel well.  The growth in my adenoid is back in full swing and I can tell it's infected.  I refuse to go through that horrible surgery again.  The glads could be my lupus flaring or something else going on.  Too bad I'm not the type of person to run to the doctors, I absolutely hate going and it is always later than it should be for that reason.  Otherwise, with the health problems I have I could go every week for every little sniffle and cut.  So I will just take it easy and see if it gets better on it's own.  I feel as if I have been hit by a mag truck.  Along with that the pain in my lower right is throbbing and continues to keep me from sleeping and standing and sitting without pain.  As my daughter keeps reminding me, there are those who are worse off than I.  (Forgive the horrible sentence).

Remicade was my first big Biological drug I took for Crohn's Disease.  In fairness to my doctor he did give me a good strong warning before starting the drug.  Was it successful? Was it worth it?  It's hard to say.  I never really felt great and never experienced remission.  The cost involved in taking this drug after looking back wasn't worth it, but at the time I was desperate and had high hopes.  I believe it was about 10-12 thousand each infusion and wasn't completely covered.  My cost was about 2500 and these infusions were about every 4 to 6 weeks.  Not only that, but it required missing a half day of work to sit for four hours and take the infusion and the exposure to all the sickness.  But the biggest problem was that I built up a tolerance and never really experienced relief.  All the debt I accumulated from these infusions is ridiculous.  Somebody was making a huge profit off of this.  I remember the nurse telling me to take tylenol before I came in as they were charging $7.50 a pill.  I did experience sores, sinus issues, headaches and weight gain from Remicade so again another biological that basically failed.

Humira, I wished I had never ever taken this drug.  The risks for me did not out weigh the benefits.  Severe liver issues which I am still recovering from and am reluctant to take anything for fear of hurting it even worse.  Lupus, yes lupus and my doctor said they had heard of another patient who also got lupus from Humira.  The lupus is a problem and another auto immune disease to tangle with on top of the Crohn's Disease and and even harder to diagnose than Crohns (still working on that) but all signs clearly point to Lupus as there are tell tale signs of rashes that very clearly in my case indicate it.  The joint pain, rashes, sores etc... UGH!  I never really felt any relief or much of anything from taking it.  Not to mention that it hurt like hell.  It is possible that it was doing some work and I never felt the relief, I am not naive about this whole situation.  But for signs that I would feel or see in my case it wasn't worth the risk!

Feel better after a hard morning.  I will take any amount of reprieve.  Something is better than nothing.  I ate a sweet potato last night, not a big one and it was just too dang much fiber for my system.  Hadn't eaten any real food in so long I thought I would give it a try.  What's wrong with us Crohnie's, don't we ever learn?  It's not going to change, but every once in a while I think what can it hurt.  Well, a lot.  I know better but don't listen to my own wisdom.  Oh what I would give for a bowl of popcorn!  I tell you what I would give, several days of hell and in the end it wouldn't be worth it.  So again today I will stick with my soft bland little bits of food and be thankful that I can eat that, it's better than an all liquid diet. 

Finally fell asleep at 1:00 after a pain pill at 11:30, up again at 4, fell back to sleep at 7 and up again at 8:30.  What a night!  I think I would have felt better had I never tried to sleep.  I realize though that your body can't heal without sleep so I guess some is better than none. But when you fight that hard to sleep sometimes it's more exhausting than going without.  So this morning I have to pull on my big girl panties and force myself to go get some groceries with my hubby.  Luckily, he will do most of the work and will just drag me behind him.  Is it bad that I don't give a damm what people think and will go in my sweats, flip flops and sweatshirt?  It hurts to damm bad to fathom putting on real pants.  Sorry, I don't know what's with the word damm, brain fog I guess.

Again, I could barely manage to get out of bed to use the restroom this morning, the pain was so over the top.  As I sit here pondering what I am going to do to get through this excruciating pain today.  I have done the obvious to try and help myself but it won't subside.  Hmmmm.  How do others manage this day after day.  It feels like a knife in my lower right abdomen, they say the crohn's pain is similar to appendix.  Seriously, I feel like I'm losing my mind to this pain.  So, I will end this complaining and hope for a better day tomorrow.

Pain brought me down yesterday, literally ended up on the kitchen tile with the dog licking my face.  To say I had a hard day yesterday would be a light account.  This is getting old.  I'm hoping that since my Insurance is being taken over my the big hospital in the area, that they might change and make some new doctors available to me.  I need a good GI doctor.  This morning I woke up with pain so severe I could barely get out of bed to use the restroom.  I don't know if something is pushing on my bladder making the pain so horrible I can barely move when it's full.  So I need to see my OB doctor soon.  But with my insurance saying they won't cover any surgery unless it's an emergency leaves me to just have to suffer.  So my hope is with new professionals taking over the Insurance I will get people who are professional and make decisions not based upon dollars but upon what is good for the patient.  Maybe some new doctors will shed light on my situation and help me get something done. I need help with my Crohns, Lupus, Hysterectomy and pain and I am at the mercy of others. 

Happiness is the first cup of coffee in the morning, a small gesture from my hubby, chatting with my children, a sunny day, the greeting from my dog after I have been gone (even if it's just 5 minutes of being gone), a new inexpensive article of clothing (the better the deal the happier I feel), playing 1 cent video poker (especially if I win my dollar back), a day off from cooking dinner, my house being clean, going for a ride in the countryside, relief from my pain, a good hair day (doesn't matter what it looks like as long as I like it), skinny day (women know what I mean), my dogs excitement over seeing another dog, the wild baby bunny that lives under our shed, when the deer come down from the rimrock and visit, seeing the wild horses in the rimrock, a diet coke from a restaurant, sharing ebay war stories with my sister, and if your reading this the fact that you care enough about me to take the time to read my thoughts.  HAPPY NEW YEAR!