Are you like me and wear several different ‘masks’ throughout the day? I have a couple. At home the mask comes off. At work I put on the ‘mask’ of nothing is wrong with me, I am doing ok, putting my brave foot forward. In public I wear the same ‘mask’ I try to hide my pain, my exhaustion, my tears, and just smile. At the doctors offices I put my ‘fear nothing’ mask on and pretend my situation isn’t really that bad. This month has been a hard one for me. At work I pretend everything is fine because its a place I can ‘escape’ and keep busy by working, I don’t have to think about anything but work. My depression really started up again towards the end of summer. I had all these hopes that I would get better this summer with doing water aerobics almost daily instead it did the exact opposite. I was in more pain and more exhausted. I was left with disappointment. I have been dealing with a lot of frustration towards doctors and myself. I am so thankful it worked for me to only work Tuesdays-Thursdays but on the flip side of that I am so defeated that my body failed me and I can’t handle working 5 days a week anymore at the age of 22 thats something that has been weighing me down greatly. I should be able to work 5 days a week and be able to enjoy the weekend. I love working and right now I need to work. I need it for my mental health and physically it keeps my body going. Then I started into this week and my depression got worse, I grew frustrated and had several breakdowns at home. At the end of July I had a pretty painful swollen lymph nodes in my underarm and was accompanied with just really not feeling good. That lasted for about two weeks and went away. I didn’t alert any of my doctors because I wanted a break and I knew they probably wouldn’t be able to do anything about it. I figured it was just a flare up. Then last Saturday I woke up to a very painful swollen lymph node again in my left underarm this time. I had a sore in my mouth my hair was extremely itchy and falling out more again. I thought to myself great I am going into another flare up. Then about Tuesday I really started to feel horrible. I had two mouth sores, my rash was coming back, my throat has felt like a huge lump, my joints were getting swollen and warm, my mouth and eyes were so much more dry, I had a more intense headache, I was extremely exhausted, my appetite went way down, and my glands started swelling. At that point I knew this was a flare up but my lymph nodes would not go down and was painful I thought to myself ok if I go to the doctor they can finally mark this on paper and not just take my word for what was happening on and off this whole year. My family doctors office was closed for two days so I had to go to an urgent care and my rheumatologist was booked and couldn’t see me. I was so upset because I knew urgent care wouldn’t be able to help me they don’t know my history. They told me they were going to test for Mono I knew it would come back negative and sure enough it came back negative, then they just said oh its probably a virus. I felt so down and defeated that night and shed quite a few tears. I was so upset of never getting answers and getting no help or pain relief its the standard just wait it out. On Friday my family doctor wanted to see me to check out my lymph nodes but it had gone down a little in swelling which is good but I was sore. We said this doesn’t have anything to do with Fibromyalgia does it he replied with no and that he wanted me to get to Cleveland Clinic sooner then October. Basically I am in a flare up of whatever auto-immune disease I possibly have or whatever else is wrong with me. My family doctor has been the most helpful and honest doctors out of everyone I see. I told him how frustrated I am with Cleveland right now. Short story they told us they would call in July to set up my October appointment I never got a call. I called in August and was told her calendar was booked and that I have to call them weekly to keep reminding them. I was so upset and frustrated I already have to do a lot with prescriptions and calling and scheduling then to add this I was so mad at Cleveland. My family doctor assured me they could take it from here and help with calling to take some of it of my plate and to see if they can get me in sooner. We had talked about my depression at the appointment also and decided we need to double up. I didn’t take it as a defeat I needed help I could feel myself starting to slip again. I hope the increased dose helps it is going to take some time to adjust again. This week especially I feel so lost and feel like I only have about 3 doctors who are really trying to figure me out. Its scary to feel so lost. I have asked myself a lot this week what is so wrong with me that no one can figure me out I have blood tests that prove I have more going on and doctors telling me that but no one can figure it out they have suspicions but won’t diagnose yet. I have never felt more rejected. I feel rejected by friends and just society in general because I can’t do anything ‘fun’ I can’t even go out somewhere by myself someone has to physically help me get into a vehicle. I have to cancel sometimes because I just am too exhausted or sick to go somewhere. I even feel rejected by some doctors. As in they don’t really want to deal with me or have me on their ‘case load’ because I am a big question mark and no one can diagnose whatever else is wrong. Some doctors tell me its because I am not doing water aerobics enough I am so sick and tired of that I have been doing it once a week pretty much for a whole year this summer I did it almost daily. I dread doctor appointments because I never get answers I just get told something else is going on but I don’t know what it is. I just want a break from doctor appointments, taking medicines, calling doctors, setting up appointments, refilling medicine but I can’t. Somedays and weeks it gets really overwhelming. Its been a tough week and I can’t hide that. I know I will pick myself up again eventually but thats where I am today. I know this blog post is a little different but it was more for me. I needed to write this and I have been avoiding it. Sometimes you just have to write your feelings down. I know and hope someday they will get to the bottom of what is truly wrong with me. I know having a name won’t change much because with chronic illnesses you don’t get cured you just manage symptoms but at least it will be called something instead of we don’t know what is wrong with you. I miss being ‘healthy’ where you could just let your body work through your cold or whatever. I have to alert the doctor because my immune system is weak . For example now when I get swollen lymph nodes I have to get seen by my doctor basically so he can see whats going on and to start a paper trail. I have been letting it slide this year but this flare up has lasted longer then most and its more aggressive. This week I have had many questions and a lot of self doubt. Its been an emotionally and physically exhausting week. I just want someone to figure out what is wrong with me. Mom and I keep wishing all of my doctors could have a meeting and just figure out what is wrong with me and start getting the right medicines. Sometimes I can deal with all of this and put on my happy face and just focus on the things I am thankful for and can still do but sometimes I can’t. I hope next month is a little bit better. I can only focus on one day at a time. A song I have been repeating so much is Let the Waters Rise by Mikeschair its an older song but it has always been one of my favorites. “God your love is enough, You will pull me through, Im holdin on to You.” I attached the link to listen to the song.
“I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; he sat my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear the Lord and put their trust in him.” Psalm 40:1-3