Hi everyone! Sorry it has been almost 2 months…
A lot has been going on so lets get started!
I hate this pain pump! I know I have said it before but I really hate this pump! My health life has changed so much in this past year and a half and not for the good.
The whole process that my pain doctor puts me through is ridiculous! I have to see him every 30 days for med check and then every 60 days for pain pump fill. And lately i have had to make an extra visit for him to do this or that. Each visit requires a dumb dice roll which determines whether or not you do a piss test or not. And then each visit costs between 250-400 a visit! RIDICULOUS
As far as the pain pump I was promised that it would be the best thing ever for my pain and it would eliminate the need for oral or pain patches…..But that was just a bunch of shit…I have been back on orals for over 6 months! For the last 8 months at EVERY visit with him I have repeatedly asked sometimes begged him to either switch out the pain drug in my pump or to take the damn thing out. I am sure the pain pump is good for some but it definitely has not been for me. Anyways last week Ryan and I went into see the doctor but ended up seeing his PA. At first I was a little upset that I wasn’t seeing the doctor as planned but it ended up being the best appt ever. His PA seemed to be really concerned and she promised that she would talk to the DR and figure out something…the next day she called and said…we WILL be changing out your meds!!!
Fast forward to this past WED……the doctor removed as much of the old pain med in my pump and added in the new pain drug. But here is the thing….he was supposed to empty the ENTIRE pump, then prime and then add the new drug but he didn’t want to take the time. So until tomorrow at 12:30 PM i will still be on the old pain drug, then like magic the pump on its own will switch itself to the new drug. So we shall see if it helps or not….fingers crossed. I will hopefully do an update next week on whether the new pain drug is working or not..
As of this past Monday it has been 5 weeks since I have taken any chemo type meds and it has been 2 weeks since I have taken any biologics. Some people think I am crazy and several doctors I have talked to say that this is a dumb move and that the RA will do irreparable damage and that I will regret stopping meds. But this is my life and no matter what i do I will not stop death…none of us can. So I am taking this chance and I am OK with it. If i find that my health is getting worse, I do have a new biologic my Doctor has given me that I am able to take immediately. BUT until then I am 95% clean eating and taking cats claw daily which is a natural TNF. I also have been using this foam roller on my spine where I experience a lot of pain and it seems to help a little which is better than nothing. Stretching does help sometimes.
As far as being off meds…… I am experiencing pain in places I have never noticed but I have been OUT of bed more than I have the last 5-6 months. I have been going to the movies with Ryan and his parents. I have been on some ghost hosts, been to a concert and even went to the Rib cook off even though I was being pushed in a wheelchair. It feels good to get OUT even though my pain has been ridiculous. This is why I am praying that the NEW pain drug helps. It would be nice to get out and NOT feel as much pain. If you have any clean eating recipes, send me and email or DM on my Instagram!
I have only been in the hospital once this past month which is GOOD. It can be a challenge entertaining yourself while waiting on doctors… 😉
Just a few things I want to chat about…
When others stay quiet, I speak my mind because I want others to know the Good and the Bad with being chronically ill.
Life still happens to us however I feel sometimes people think because we are “sick” that we get a “pass” on other life experiences. This could not be further from the truth. Some of us still have jobs, we have families, we have bills just like the rest of the world. The only difference is we do all these things in constant pain and experience extreme fatigue etc.
With that said, when we ask for help, we really DO NEED IT. and sometimes especially for me it is hard to ask for help because I don’t like feeling needy or a burden to anyone. So if I ask you be upfront on whether you can help out or not..its common courtesy….. DO NOT BE AN ASS!
Time is precious, even more so in my opinion when you are battling a disease or cancer. So please do not waste our time being on your electronics. Life is short make memories with those you love or go live with your electronics….choice is simple….
NOT ALL THINGS GO BAD…..
Some good news this past month is we were able to get the car I have had my eye on this past few month…. Here is my new ride!
For once in my life I love my car <3
Take life second by second!
Remember you ARE not alone…….Keep getting back up….keep up the fight warrior <3