I have to get some things off my chest. I am tired of feeling all alone in this scary health crisis I find myself in. I am tired of having to put on a smile and pretend I am okay because if I say anything contrary I will be lectured on how I just need to stop being lazy or take some anti-anxiety pills and “get on” with life. I am done giving other people who won’t listen, family and doctors, the upper hand on my life. They are not in my body, they do not experience what I experience. I am done with being treated like I am making this up or that I am looking for attention. I am not. To constantly feel invalidated and belittled by the people in your life who are supposed to help and support you can drive you crazy. And make you very, very depressed.
No I don’t have a diagnosis at the moment. Just because I haven’t found a name to what is causing my symptoms does not mean it is not real. And it does not mean I am making it up. If the people in my life understood that, I would feel a lot less stressed and afraid. I have to pretend I feel good so my family doesn’t roll their eyes and laugh and say, “You’re just having a panic attack. Want a Xanax?” only to add insult to my injury. How would you feel if your heart pounded when you stood around for a few minutes and you had no choice but to sit back down because your legs get heavy and you feel you might faint? How would you feel if your armpits sweated all the time and for no reason at all? How would you feel if you kept waking up every 2–3 hours each night and then stay up for 3 more before you can fall back asleep? How would you feel getting so short of breath just by doing mundane things you used to be able to do before with no problem? How would you feel if the only time you felt good was laying down? Literally?
Now imagine going through all of that alone. No one believing you. No one listening to you. Doctors shake their heads and write you a prescription for anxiety medication and tell you it’s all in your mind. Family saying you are lazy or looking for attention. All you can do is cry. You wonder if you really are crazy. You wonder what you did for God to punish you. You wonder if it will end.
Today I got more medical bills that have gone to collections. Little reminders that I am “looking for attention”. Not having money to pay them off, wondering what I am going to do once I lose my health insurance next year. How will I get my prolactinoma medication? How will I be able to get MRIs to see if my tumor is growing? I realize these were all of the things I once took for granted, always subconsciously thinking they would be there. I am an adult now. And I have no clue what I’m doing. All of this happened at the worst possible time. Why couldn’t my body give out on me at 30? By then I may have at least had a stable job and money and health insurance and maybe a spouse. Instead I feel like I am abandoned on a island left with no tools or map to navigate through this. I fear homelessness. What if I never get a solid diagnosis and can’t work and end up on the streets?
I know I have God. But lately He has been feeling a million miles away. I pray but only an iota of His presence cuts through. Most of the time not even an iota. Pure darkness. No voice. No comfort. Only silence. I fear asking Him for help because I know He can thwart everything and cause more suffering, if that is His intent. I know the last time I asked Him for help in making my doctor believe me, it went horribly. It went in the absolute polar opposite of what I prayed for. It makes me nervous to ask again. I don’t want to give Him a chance to ruin my chance of finding answers again. I know that sounds horrible. But I would be lying if I said otherwise.
It’s not easy for me to just up and go doctor shopping until I find one who listens. I can’t drive and must rely on family members to get me around. They aren’t going to drive me out of town to see a specialist, and I wouldn’t be able to afford one anyway. It makes it that much more complicated to get the help I need. I have to go through hoops to get where I need to be, and most of the time those hoops won’t let me go through. I get attacked and interrogated as to why I am doing a certain thing or getting a certain test because they don’t believe me. By a miracle I found an old lab slip for estrogen that I used to be able to convince a relative to take me to Quest so I can get the metanphrine test done my endo sent there. After those come back, I am going to try to see that endo again. A Facebook friend from a group has offered to pay for my visit, so I am taking advantage of it. Very thankful for that. My bank account is negative, and there is no way I could pay for it myself.
Another thing that is worrying me is, how can I keep up my healthy diet if I have no money? My food stamps are going to be taken away from me because I have no proof of disability (even though I certainly feel it, it is not proof enough) and I only had $65 left on them anyway. I am not sure what I will do once that is over. I know there is a food bank charity near me but I am not sure how it works. I don’t know if they give you things or if you can pick what you want. I suppose I can live on dry vegan foods and just have bananas here and there, but that is not exactly healing. And I need healing. I have been looking for work at home jobs and hopefully can find something soon. That would help a lot. And I wouldn’t have to worry about overexerting myself.
Just so much crap happening. I am getting better at choosing peace and not stress. I am learning how to tune out negativity. I am learning to allow gripe and B.S. go one ear and out the other instead of internalizing it and letting it ruin my mood. Worry doesn’t help anyone and it doesn’t get anything done, except maybe make your heart pound a little more than it already is. During quiet reflection times on my bed I imagine myself in a boat during a heavy storm and focusing my eyes on Jesus standing on the water. No matter what is going wrong around me, I have to keep my eyes on Him.
