Friday, December 6, 2013

Playing Catch Up!

I realized in between being in the hospital multiple times the past couple of months and National Health Blog Post Month I haven't actually updated on what has been going on with me health wise in a while and there has been a whole lot going on and just a whole lot in general, so I'm going to do as good of an update as I can without being too horribly long if I can help it. 

*Last I left you on the update forefront I had a bad tube (that had just been put in), a bad GI doc, a lot of symptoms, no real idea of what was going on, and was trying to adapt to life as a tubie. None of this is true anymore, thank God, but it took me a long time and a lot of drama to get to this point! 
*I kept having severe symptoms of not tolerating my formula (only getting about 200 calories a day),  having lots of bile come back through my tube, vomiting, distension, basically lots of nasty symptoms. So I finally got a GI appointment after many, many attempts with a rude nurse telling me it was no big deal and it was expected and to get over it. 
*This GI appointment was the worst appointment I've ever been to in my life, it was demeaning and belittling. Basically every symptom I brought up I was told was impossible. And my mom was with me so the doctor was acting like he didn't believe either one of us. 
*3 days later I was told to go to the ER by the on call GI doctor because my symptoms were very worrisome and my GI was no where to be found (like the other doctors couldn't even find him or his nurses) so I went to my ER in town and they sent me to Indy after a CT scan revealed I had an obstruction and I spent 9 days there. 
*In that 9 days I got my tube replaced to a bigger, better tube. And then it was re-inserted twice when it halfway pushed out and fully replaced again when it completely came out the day I was supposed to be getting discharged. I also got a port so I don't have to worry about getting IV's anymore or labwork because my veins are completely shot. It is also there because my geneticist believes will have to be on TPN or IV nutrition eventually. 
*Have been doing ok with the new tube, no crazy *impossible* symptoms anymore so the surgeries must have fixed those impossibilities right up. 
*I'm still only up to about 800 calories a day by tube and trying to eat orally but that's not going so well.
*I met with my brand, spanking new GI doctor this past Monday and while he basically told me that 'we' will get little to no use out of my stomach it is still good to keep trying. Right now we are having me try taking some anxiety medicine 30 minutes before eating (small bites not full meals) orally (it relaxes your stomach muscles) to see if that helps with the nausea and vomiting. I'm supposed to try that at breakfast for a week, then if that doesn't work dinner for a week, and if that doesn't work a bedtime snack for a week...he said if that doesn't work it's a fail and I will unlikely be unable to eat without vomiting ever again. Good news though I successfully got 2 (FULL MEALS) down this week without vomiting at breakfastish/lunchish time!!! Bad news, I have not had them come out the other way either and I'm currently trying to work on that with miralax and I'm having a lot of pain and distension and cramping. To go along with that he also wants me to get some peppermint oil which he says will help a ton with my abdominal muscle pain from the tube surgery and from the cramping and distension, so I ordered some from Amazon and am waiting on it to get here. He also wants me to try to get my acupuncturist to see me again (she quit seeing me after I got my tube) to see if that will continue to help me with pain management (this will get its own section). He also told me to continue my mito supplements because that will help too. 
*I'm seeing my geneticist at the end of December (30th) to go over all the genetic testing and see where we are, I'm so nervous for, but can't wait for that appointment.
*I'm seeing rheumy next week, also can't wait for that, lots to update him on and lots of new concerns
*I finally saw the neurosurgeon about my thoracic outlet syndrome and he agrees that we are likely looking at surgery in the near future, definitely looking at it in the future, and that will hopefully relieve a lot of my pain and maybe some of my autonomic function symptoms. I'm waiting to hear back about an EMG, X-Ray, and specialized MRI called a neurogram to look at my nerves so we can figure out exactly which ones are causing the issue. 
*I'm continuing with chiropractic weekly, massage whenever I can afford it (usually bi-monthly), and weekly saline infusions to stay in check with my self and maintained. 

I don't know if you have noticed or not, but healthcare is going through some changes right now. And quite frankly all it's doing is screwing over the patients, especially the chronically ill ones. 

Two things have come down and directly affected my life, or started too lately and they are really irritating me so I'm going to blog about them because I can and I will still probably get in trouble for it. But I'm going to talk about how the Affordable Care Act and the new drug laws have affected me or are starting too and no one even knows what they're doing. Seriously. 

At my last hospital visit, I just so happened to be admitted at the same time as one of my good friends with all the same conditions as me, most of the same doctors as me, on the same floor as me. It was insane the things that I was told it had to be this way per policy and she was told the complete opposite. Or we were both told complete opposite things on different days by different people, or even worse, the same person. But I'm leaving her off of my blog and I've got an even more ridiculous story that is so stupid it is hilarious. So here goes. 

Pain Medication:
*When I ran out of pain meds from the hospital I asked my rheumy (who's been filling my pain meds for 2 years) if he could switch my pain meds to liquid since I have a tube now. His nurse informs me that since I haven't asked for pain meds since June (31st) he could not refill them and that he can't refill them anymore anyway because as of Nov. 1st only a PCP can refill pain meds or a pain specialist. Now mind you, my pain meds he filled at the end of June should have lasted me until September at the rate of 1 a day (which is what I take) since there were 120 in there and once September rolled around I was being provided pain meds by the hospital until I asked for the refill. But I had even quit taking them because of the dietetics program so I still have almost the whole bottle, I just wanted them switched to liquid. 
*I called the PCP he wouldn't refill them without the info from the Indianapolis doctors even though I have a doctor in town willing to vouch that I benefit from them but because of the new law he can't fill them. 
*My geneticist calls him and tells him to refill it but only if I agree to go to pain management because it's policy, I agree, I then have to go in and fill out all kind of paperwork before I can get my refill. It still takes 3 days to get my refill even though I show up to fill out my paperwork within 30 minutes. 
*When the prescription is finally called in it's tablets (60) and I call back and say this won't do, the whole point was to get liquids I have tablets at home! 
*The liquid is called in and it's only 12 doses compared to 60. I call back and ask why and they say that's the most the law will allow to be written for. I say but I got 60 pills yesterday but only 12 doses of liquid meds and get rude answers and get told that it will be refilled until I get into pain management don't worry about it. 
*4 days later when I find out I will be calling every 4 days, waiting 3 days for a refill, after calling 3-5 times and begging for a refill and to speak to someone and finally getting the refill but never getting an explanation of the policy of the 12 refill rule I realize it's going to be a long couple of months. I ask to speak to an office manager. I still only get 12 doses on my next refill. 
*I call back and explain that this is a waste of resources for their entire office (the receptionist, the nurse, the doctor), the pharmacist, and I simply can't afford it or use all my spoons (energy) to continue to do this. I am promised a phone call back within 30 minutes, instead I get a call from the pharmacy that my 12 doses are ready. 
*So yesterday, I call and simply say "This is Meggers can I get my pain meds refilled please, thank you." and hang up. So when I check my pharmacy account to see how much it's going to be this time, imagine my surprise when I notice it says not only that I have 125 doses but also a refill on the prescription???? **P.S. Still no referral to a pain clinic I'm asking rheumy about that Wednesday. Ugh. 
*Well, that policy certainly got shot to hell in a hurry...if it was a policy at all...or if someone just didn't know what the heck they were doing I don't know, but the picture explains it all. On the left is the *1* small bottle that I had been getting previously for the 12 doses, on the right are the *5* larger bottles I picked up yesterday containing all pain medication. What the heck?! I just don't understand. 

I also don't understand how the "policy" that is supposed to protect patients and put order in the hospitals and doctor's offices is very likely what almost killed me this past hospital visit. Every doctor was so worried about what the "handbook" said that no one was worried about what I was telling them and what I was telling them is that I was dying. 

Like when I had to relive the emotional trauma of having a critically low potassium level and almost dying from that because when I kept telling the doctors I couldn't be NPO 2, 3, 4, 5 days in a row, I really couldn't be because I would die. (Go back to the blog's beginning if you want to re-live my first time almost dying from my potassium being too low, this is a real fear of mine, not just unfounded). But no instead they just called in a psychologist because I had extreme anxiety and didn't want to be there when I was telling them over and over again that I needed fluids with electrolytes and my formula to be run. They acted like I didn't know what I was talking about. They also told me that there was nothing wrong with my second tube and it was too costly to do anything about it, until it came completely out the next day. The doctors had no idea what they were doing with my conditions but they were allowed to care for me and tell me that I didn't know what I was talking about, even though I've been living with this for the past couple of years. I was told it was their policy so many times that I'm sure that is their answer for everything. I'm glad that they finally started listening, I wasn't sure I was going to make it out of there a couple of times. And I'm not being dramatic either, it was a really scary 9 days. If you are a close friend you remember and I thank you for being there for me. 

Like I said, the problem with all these new laws and rules and policies is simply that the patient is left out of the equation and I'm still recovering from that. I'm still learning to trust again. I'm still literally recovering because you can't just almost die and get up and go again. I'm going into the holidays grateful to be alive and giving like crazy! I am, however, still horribly weak and sick. I am trying to enjoy what I can, when I can, and remember the reason for the season. I'm spending a lot of time in bed and a lot of time with my dog. I'm still cooking as much, if not more, than I was and trying to learn not to eat the food. I'm trying to get my thesis off the ground and gear up for 2 classes in January (still online, thank goodness!) I cannot wait to get back to my old self and cannot wait for August so I can get back into program mode and finish my dietetics degree up and do my internship and graduate! I'm so excited about so many things. I'm doing everything one day at a time with God's help because even if I'm not going to be healed here on earth, I am healin' hopefully. 

I'm going into this Christmas season repeating the following verses because I need to cling onto them so much right now:
"Do you not know? Have you not heard? The Lord is the Everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40: 28-31

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