This has probably been one of the most extremely long, drawn out, stressful, fatiguing, exhausting, emotional, sick feeling, disappointing, and discouraging weeks of my life. I don't know if you can get anymore negative sounding words in there, but there probably are more if I missed some, those can probably be added too
I had a GI appointment in Indy (2 hours each way) and my mom had to drive me because we didn't know how my eyes would be, how my energy would be, and the systemic staph infection I have had has just been kicking my butt and making my energy way less. We were gone for basically 6 hours for a like 30 minute appointment. We got home and I tried to order my supplies for my feeding tube and was told that I had a HUGE balance on my account and was told I would not be able to get my supplies until I paid off the supplies from last month and pre-paid for this month (keeping in mind this was my 10th month ordering for this comment and had never paid a penny because my insurance--Medicaid from October-April and Medicare and Medicaid since April--covered everything 100%. I asked why I randomly had this ridiculous balance and the lady told me that Medicare was rejecting my supplies now and because Medicare is my primary, Medicaid wasn't paying anything on it anyway. So with the 6 hours travelling, with the infection, after talking to the doctor, and then coming home to find out about my supplies having a balance and not being able to be ordered. Monday night I had a very scary psychotic-like episode that was unexplained. I had a lack of coordination, agitation, slurred speech, confusion, change in speech rhythm and patterns, paranoia, hallucinations, irritability, lack of memory after a certain event, mood change, outbursts of anger, trouble speaking, and unusual behavior. It was definitely scary and lasted for 4-5 hours start to finish.
Tuesday, I didn't have quite the psychotic episode as the night before, but I was losing chunks of time...and I'm talking big chunks. Like 3-4 hours. It's almost like I had passed out for several hours without realizing it. Wednesday, I went to my saline infusion and my blood pressure was only 86/67 and I felt horrible. Thursday, my mom picked me up to take me to Indy again for pain management, just to get my pain med refill. That trip was about 8 hours and literally all I had to do was show up to get a prescription because they have to be hand written. But it took 2 hours to get there, he was several hours behind, and then the ride home...ugh. I also found out Thursday for some reason the financial aid office hasn't given me any financial aid for this coming up semester or the spring and after I've overcome so much to attempt to go back, if I can't because of a financial aid issue, I'm gonna lose it. Today, I had counseling. Then I had to drive to a town 45 minutes away to go to a new physical therapist because he supposedly had experience in working with those with mitochondrial disease. I make it there, they find out my prescription is expired, but let me go ahead with the evaluation anyway, and then I look up when I was called and the therapist was a therapist that I had already had in town that didn't know how to deal with mito.
So yes, I've been on the definitely discouraged side of the encouragement scale this week. There have been a lot of heavy blows...and even some that I can't mention on my blog...
But here is the thing. I love encouraging others and helping them cope with new chronic illness situations when they are in tough situations too! I love being there for them. People messaging me and asking my advice. Just being there for people and letting them vent, cry, complain. (Most of the time, I only enjoy it if they reciprocate the favor sometimes too.) Even when I am discouraged. I get more encouraged by helping other discouraged people become more encouraged. It's like a symbiotic relationship.
I had a GI appointment in Indy (2 hours each way) and my mom had to drive me because we didn't know how my eyes would be, how my energy would be, and the systemic staph infection I have had has just been kicking my butt and making my energy way less. We were gone for basically 6 hours for a like 30 minute appointment. We got home and I tried to order my supplies for my feeding tube and was told that I had a HUGE balance on my account and was told I would not be able to get my supplies until I paid off the supplies from last month and pre-paid for this month (keeping in mind this was my 10th month ordering for this comment and had never paid a penny because my insurance--Medicaid from October-April and Medicare and Medicaid since April--covered everything 100%. I asked why I randomly had this ridiculous balance and the lady told me that Medicare was rejecting my supplies now and because Medicare is my primary, Medicaid wasn't paying anything on it anyway. So with the 6 hours travelling, with the infection, after talking to the doctor, and then coming home to find out about my supplies having a balance and not being able to be ordered. Monday night I had a very scary psychotic-like episode that was unexplained. I had a lack of coordination, agitation, slurred speech, confusion, change in speech rhythm and patterns, paranoia, hallucinations, irritability, lack of memory after a certain event, mood change, outbursts of anger, trouble speaking, and unusual behavior. It was definitely scary and lasted for 4-5 hours start to finish.
Tuesday, I didn't have quite the psychotic episode as the night before, but I was losing chunks of time...and I'm talking big chunks. Like 3-4 hours. It's almost like I had passed out for several hours without realizing it. Wednesday, I went to my saline infusion and my blood pressure was only 86/67 and I felt horrible. Thursday, my mom picked me up to take me to Indy again for pain management, just to get my pain med refill. That trip was about 8 hours and literally all I had to do was show up to get a prescription because they have to be hand written. But it took 2 hours to get there, he was several hours behind, and then the ride home...ugh. I also found out Thursday for some reason the financial aid office hasn't given me any financial aid for this coming up semester or the spring and after I've overcome so much to attempt to go back, if I can't because of a financial aid issue, I'm gonna lose it. Today, I had counseling. Then I had to drive to a town 45 minutes away to go to a new physical therapist because he supposedly had experience in working with those with mitochondrial disease. I make it there, they find out my prescription is expired, but let me go ahead with the evaluation anyway, and then I look up when I was called and the therapist was a therapist that I had already had in town that didn't know how to deal with mito.
So yes, I've been on the definitely discouraged side of the encouragement scale this week. There have been a lot of heavy blows...and even some that I can't mention on my blog...
But here is the thing. I love encouraging others and helping them cope with new chronic illness situations when they are in tough situations too! I love being there for them. People messaging me and asking my advice. Just being there for people and letting them vent, cry, complain. (Most of the time, I only enjoy it if they reciprocate the favor sometimes too.) Even when I am discouraged. I get more encouraged by helping other discouraged people become more encouraged. It's like a symbiotic relationship.
I honestly believe one of the ways to stay encouraged, is to encourage other people. If you are always striving to help others be encouraged, then you are probably going to look at or hear some of the advice and encouragement you are giving to someone else and realize that "Hey, that nugget of encouragement applies to me and my situation as well," and by encouraging others, you are encouraging yourself at the same time. When you are down in the dumps, and just can't get out of the pit, take the time to encourage someone else...because seeing them react to the time that you took to give them a positive thought, a word of affirmation, or a simple smile across the room, and knowing that by whatever small act you just did to that person encouraged them and turned their day around and cheered them up, may be all it takes to get you out of the pit too.
Living in the chronic illness world, you always get your fair share and exposure to discouragement. Whether it be through your own medical journey, interactions with your medical team, something you just can't get over. Or whether it be from 1 of the hundreds of people that you have formed friendships with in the support groups online and various places. At one point in time there is ALWAYS at least one person and usually a whole lot more than one person that is discouraged. This life is discouraging. There is nothing they can do to make us better, there are people constantly telling you that they know what you should do even though they can't pronounce or spell your disease name, people you've been talking to every day for months and months all the sudden don't post for a couple of days or send you messages for a couple of days and then you find out that's because they have passed away from the exact same thing you have and that one day someone will be waiting on you to message back and they will be finding out it's you that has passed away. There is lots of negativity and discouragement in the chronic illness world.
But the best part about the chronic illness community is that no matter how bad a day you are having. No matter what is going on. No matter if you agree or disagree with this or that person's political, social, medical view points.The friends that you make in the chronic illness world are friends to the end. They will not judge you. And they will encourage you until they're blue in the face. Even if you are having the most discouraging week there has ever been in your life. Because that is what the chronic illness community does. We support each other, and we encourage each other, and we support each other, and build each other up...when all we feel is down. Because we know that even if we are having a bad week, we can help someone else have a good week with our words of encouragement. It just takes an empathetic "I'm sorry" or a smile.
If you encourage someone else, you will begin to heal yourself. I so believe that. Encouragement is empowering and it doesn't just affect the person being encouraged. Encouraging words can touch so many people in one fell swoop. The person you are encouraging, yourself, their family and friends, and your family and friends because everyone's attitude will change. This world is so down trodden all the time with so much negativity. Let's just take some time out of our busy lifes where everything is always so critical and cold and take 1 minute to encourage someone who is having a bad day. I guarantee it will not only make the person you are encouraging feel better, but it will make you feel better as well...because our words of encouragement are a gift, and giving equals healing. Who will you encourage today? How do you plan to encourage that person? How do you think that will make you feel? I hope you find it as healing as I have. Because there never can be too much encouragement in the world.
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