RANT

I am so frustrated I could just pull my hair out.

I am so friggin tired, symptoms are back, my health insurance is maxed, and I might have to delay my Remicade appt AGAIN - arrrrrrrgh!

Just seems like one thing after another. I was so sick in February. I had to take antibiotics which forced me to move my Remicade appt by a week to next Tuesday. My insurance is maxed, and while the government is covering some of my Remicade, I still have to pay for a bunch, and they are not covering my enema drugs ($6/day). Apparently, they don't consider Entocort to be a necessary drug! If they hadn't forced me to max my private insurance in the first place, my private plan would have covered it.

I just found out that I also have to have an iron infusion (least that's covered).

My Dr. ordered an antibodies test for the remi that was supposed to be back today. Now they say it might not be back by Monday, which means I will have to move my appt AGAIN, and that will probably take a week or so to get an appt. And, that's based on the assumption that the test is okay. And, of course I have to pay for the test out of my pocket.

In the meantime, I am going 13-16x per day, some formed, some D, and all with blood. I am exhausted everyday. I have to work to be able to pay for all of this stuff, but work is burning me out. I am useless to my kids and I am having a hard time staying positive.

Okay. That feels better. Pity party is almost over.

Thanks for reading.

Have you considered taking prednisone instead of entocort? I've heard pred is more effective and a lot cheaper :( It also have more side effects but it might pull you out of this flare faster if you're really feeling frustrated.

Hey notsosicklygirl - I was on pred for 14 months. Every time I tried to come off, I relapsed - I am pred-dependent. that's how I ended up on Remicade. The Entocort enemas are meant to help me get over the hump till the Remi fully kicks in (only had my first two loading doses).

It has been a crappy few weeks, and even crappier day. Pun intended! :)

I didn't realize you were using enemas, I thought you were on oral. I am sorry to hear you've had such terrible luck with prednisone. I think many of us have unfortunately. I relapsed a lot of times while on pred too. I think I am finally stable with 6mp/allopurinol. What about trying to find the enemas for cheaper in canada ? I was on cortifoam enemas and they were soooo expensive. I deifnitely wouldn't have been able to pay for them out of pocket without insurance.

I hope you find a solution quickly.

My hospital has a financial program for the remicade. If you don't have insurance or can't pay all of it they will cover it. You need to ask your doctor or call the hospital and ask for the financial person or insurance person. I thought I was going to lose my health insurance and was freaking out. They gave me all the paper work and information I needed. They were very helpful. I didn't lose it, thank god but maybe you can get help paying for it. I'm not sure how it works with insurance if they charge your insurance then use the program to pay the rest. You might want to look at that. Also, can you get on state insurance as a secondary insurance. I know this goes by income, so if you and your husband, if your married, make alot you probably won't qualify. You can go online and look it up. Just some ideas. It sucks, we have a illness and on top of it have to pay all these bills. I hope you feel better and can get back on the remicade.

Hi Momofthree,

Thanks for all of that info, but I am in Canada, so it is different here. I am on a provincial program that covers much of the Remi cost, but I am still out of pocket though for a fair chunk. I am not going off of it, just frustrated that my 3rd loading dose keeps getting unavoidably delayed, and I keep getting worse while I wait.

Hey mom2panda. I wish I had any good advice for you, but I don't have anything you haven't already heard. All I can say is that I've been there. My worst flares were the year I was initially diagnosed. I wanted to work construction but instead had to work at this shoe store (that I hated) so I could use the bathroom all the time. I started college while on prednisone and had horrible mood swings. I specifically remember being at college, feeling completely overwhelmed, and on the phone with my parents. I was teary eyed, sitting on a bench in the student center with students passing by. I just couldn't handle figuring out what to do with my life, working, studying and being essentially bi-polar from the prednisone... plus the umteen bloody trips to the restroom.

I think we can all handle this disease if we accept it, and deal with it the best we can. It will cause some negative situations, no doubt... but you're not alone and it's not your fault.

Also, I have been spending time reading anything I can on the internet about this disease. This is just a guess, but I really bet they have a much better understanding of this disease within the next ten years. Got to stay hopeful!

Best of luck to you.