Well, I am officially back on prednisone :-( (sigh). I had been taking Humira for awhile and it was working wonders with my Lupus and Colitis, not to mention it helped keep my Diabetes in order and did not contribute to more Bone loss for the nasty Osteo....BUT-my current insurance policy covers exactly .44 cents of $1500.00 for the prescription each month! Whoo-hoo! Unreal. I am so frustrated at the health care industry. Here I am stuck taking a medication that is slowly killing me so I can function enough to work and pick up my child each day. If I did not take prednisone, I can't even get out of bed...much less lift anything-including Brayden! Prednisone has also spiked my sugars, and that is contributing to putting more of a strain on my kidneys because my sugar is so elevated. So...I have been back on it for a few weeks now, and have already started getting "puffy" again from the water retention, and I am really frustrated. I don't usually use the blog to vent my frustrations, but writing about it makes some of it better in some ways I guess. So...not only does my insurance not cover the Humira, but it also does not cover my diabetes meds or supplies (ouch), and/or my osteo shot Forteo!!! All of those medications each month without insurance would cost me about 3K! There is no way I can afford that, so I will continue on the prednisone because it is the ONLY thing that works...and believe me I have tried a million things over the last 10 years that just don't do what I need it to do. So, I am concerned that my bones are going to get worse again (worse than an 80 yr old woman-yes) worse. I am concerned that I will soon be told not to pick up my son anymore. I am really not supposed to be lifting him now, but thankfully the Occupational therapist I saw prior to his birth taught me how to pick him up in ways that I would not break my bones!!! That was with the understanding that he was not working on 25-30 pounds either though!
I am not frustrated that I am sick-I have long come to terms with those emotions- but I am frustrated that because of insurance I cannot get the care I need! That's backwards huh? I'm frustrated that I am taking a medication that allows me to hold and pick up my son, but is slowly killing me at the same time! How do you choose? I am frustrated that I work and do not rely on assistance like I certainly could...and I struggle to find insurance to pay for medications I need-when others just rely on assistance from the state and get all of their medications for FREE!!!
I have made my choices, and I choose to work and support myself in this area, but it still rubs me the wrong way sometimes when others could do the same, and don't, and they don't have to worry about taking meds that will eventually be the demise of their kidneys, liver, heart etc! I have been looking into the drug companies that make Humira, and right now they will offer a $600.00 rebate to assist with the cost, but that still is not going to help me! UGH! I am feeling okay now that I am taking prednisone again, but the winter weather has taken its toll on me this year. My Lupus has flared due to all of the changes and stress at work, these hours are killing me, and the weather does not contribute anything positive for my health this time of year either. The hours at work would not be so bad, except last week Brayden woke up when I got home at 3am, and stayed awake all day-three times!!! I tried to get him back to sleep with no success...he just wanted to play and snuggle with Mommy. The first night I played with him and prayed I would get a chance to nap later-which I did for two hours that next morning. After the second night of this, I played again, and prayed he would nap again, which he did for three hours the next morning. By day three-I woke Ron up-he came downstairs to play with Brayden, and I went to take a shower to wake myself up. I stood in the shower against the wall for a few minutes, then began sobbing because I was literally exhausted!!! Its the kind of sob that is not derived from sadness, but just pure tired frustration. I was not frustrated with Brayden because I certainly don't mind it if he needs me, in fact I love those times with him...but I was so so very tired. So...this week it hit me pretty hard...and I am trying to catch up my sleep and feel better. That just makes the insurance thing that much more frustrating to deal with right now. Hopefully soon I can figure out some solution to this medication dilemna. I will keep you posted.