Sorry I have been so absent lately. I have been a little reluctant to share this blog. I wrote this on Tuesday night and its now Saturday. I hate conflicts more than anything but this needs to be addressed because not only are invisible illnesses misunderstood with the general public they can be just as much misunderstood in a “safe” place such as a doctor’s office. I feel like I mean to write so many blogs then something comes up and I “shut down” for a while. I am not going to lie this month has been difficult. My depression got really bad again. Yes, I am not afraid or ashamed to admit that my body needs anxiety medicine and depression medicine. It has made a difference and that’s why I take it. I have been on my anxiety medicine for about a little over a month and I can’t believe the difference it makes! I know its crazy but with some of my doctors or new doctors I see I get really bad anxiety because I have had 2 bad experiences and it’s not something you just get over or forget. It is especially nerve wracking when you’re a very confusing patient. I never know how the doctor or nurses will respond to me. I get nervous when they start reading over my records and I have to talk about everything ALL over again. I’m pretty sure I basically have that memorized by now (insert eye roll 🙄) . I never know what they will think when they see I have 2 rheumatologists – one locally and one at Cleveland and we still don’t have answers. Each new doctor or nurse has their own questions they want to ask and try to figure me out. When you have a chronic illness or confusing invisible illness(es) doctor appointments can bring on so much anxiety because these diseases are SO misunderstood and some people don’t have enough education. So, rewind a couple weeks ago. I had an appointment with a Nurse Practitioner. I love all of my nurses and nurse practitioners that I see. I wasn’t too nervous because I really liked the doctor there and he just wanted me to have a quick check in with the nurse to get my headaches recorded and on charts. I didn’t really think this was going to be a bad appointment so I didn’t take my anxiety medicine and boy did I ever make the wrong choice. Whoa!
I haven’t talked much about this appointment because it brings anxiety and a sense of failure on my part. I felt so defeated and worthless and like a complete failure. This appointment had me second guessing myself during the appointment (I kept thinking maybe it’s not really this bad -am I just going crazy?). I am not going crazy and I have SO many symptoms and blood tests that are proof. I have honestly never left a doctor’s appointment feeling SO embarrassed and like I had actually let my doctors down. Now don’t get me wrong, I have so much respect for doctors and nurses and rely on them so much. Sometimes though things don’t always work out. I don’t know what went wrong so fast during this appointment, but it went south fast. As I mentioned earlier I had 2 rough appointments before. Short summary was with a nurse who just thought my rash was silly and was just acne and didn’t know why I had a scar on my lip (um because I was born with a cleft lip and palate). Turns out it wasn’t acne and I quickly found a new amazing dermatologist who is trying to figure out my weird skin haha. The other appointment was with a pain doctor at Cleveland. Now the funny// not funny thing is I always thought that was my worst appointment, I mean I cried like all the way home from that. That was a long story, but he basically said fibromyalgia isn’t really a thing and that if he was me he could cure himself in 2 weeks and I wasn’t making my Dad proud because I dropped out of college. Now in the midst of that he did say things we agreed with like no exercising and never to over exert myself because so quickly I could get into a really bad flare up. He at least knew what he was doing I guess.
Then last month I had what I thought would be a quick and simple appointment. I loved the nurse assistant that day she was so friendly and helpful. I then met with the N.P. I thought it was going to be just going over my headaches and that was it. She decided to do a “short” physical exam on me. She wondered why I was in the wheelchair and I told her everything and she said something along the lines of that’s really weird, you need to be walking. So as the appointment went on I was getting frustrated and I could tell my Mom was getting frustrated also. She wanted to see me walk (mind you I was in the wheelchair so my walker was at home and she wasn’t going to help me any). (Now earlier in January when I met with the doctor he was really careful and let me use my wheelchair as a walker and as soon as I felt my POTS symptoms come on and my knees start to hurt he let me come back and helped me settle in the wheelchair giving me balance support the whole time. ) She asked me to walk so I said ok. I just walked across the hall and started to turn around she said no go a little bit farther please. So me being me I did because I couldn’t disobey someone in the medical field. *Lesson for the future I can say no and its ok to say NO. As I got to her next little “checkpoint” I said Im really not feeling good can I go back. No I want you to go to the end here and then turn around. I did and about halfway back to the room I felt like I was back on the tilt table test and my legs were on fire. I said I have to go back I don’t feel good. I fell into the wall which thankfully the wall was there. I was even left with a souvenir and had some bruises. Before letting me sit down she wanted to know how I was feeling as I was basically leaning into the wall. I said I feel awful, I feel like I am sweating buckets, my knees and hips hurt, they feel heavy, my heart rate is going up and I feel like I want to throw up and pass out. As I am doing everything to keep the tears down she looks at my fit-bit and replies your heart rate is only 93 thats not bad at all. (Mind you POTS usually takes about 10-15 minutes to have your hr increase by at least 30 BPMs or exceed 120.) So I didn’t know what my hr was before I started walking but I know my symptoms and I knew my hr was going up. I finally made it back to my wheelchair and I just cried and cried. I felt so embarrassed that I couldn’t walk the little L shaped hallway. I was so upset with myself and with her. She asked if I was ok I just nodded because I was so confused at what happened and I felt miserable. That night was awful. My knees were swollen and my heart rate stayed above 100 all night long thanks to my fit-bit I was able to track that. After that appointment I slid into a depression. I let my primary doctor know and the doctor from that office what happened. I am not going to mention the office name or anything because thats not important right now. I was just upset that I didn’t stand up for myself and I was upset that she misunderstood my condition so much. I was so bothered by the fact that she didn’t understand when I told her all of my doctors said the only walking I am supposed to do is in the house with the walker. She said no you need to walk a lot more then what you are doing and the next appointment I want you at least 50 % better. OK WHAT ARE YOU KIDDING ME? ←← that’s what I said in my head.
You bet that after that appointment I cried and felt like a complete failure and questioned myself multiple times. Call me a medical record nerd or whatever but I looked at my medical records that night and it was stated many times patient is not to walk more than house, water aerobics isn’t working and so on. I was just so upset about the 50% thing what do you think I have been doing the past 2 YEARS! Do you think I enjoy having my Mom push me in a wheelchair in public at the age of 23. Most people my age are going on dates, or planning weddings, or having kids, and I am over here in a wheelchair and reminded I can’t live independently. Do you think I enjoy seeing so many doctors and being told yeah something else is wrong with you we just don’t know what yet.. its going to take a few years for your ANA to show up, etc… Do you think I enjoy not being able to run and walk like I want. I wish everyday when I wake up I could be even 10% better. Do you not think everyday when I wake up and look over at my walker or instantly feel all the pain that I could be 50% better. If you honestly think I chose this or like it I am sorry but you’re crazy. Just before I got sick I was running a mile almost every night and I loved it. After I got sick I did everything I could to stay out of that wheelchair. I pushed myself so hard in water aerobics. I ate really careful. I did everything and anything in my power to get better but my body was done. My body just had enough and fighting that infection was like a big old switchboard went on in my body and everything just turned on. I didn’t cause myself to start throwing up and passing out or making my knees red every time I walked. Sometimes I wish my doctors could just follow me around for a week. Now I am really close to some of my doctors which may seem weird but you get to know someone when you visit them a lot during the past 2 years. I’ve joked and laughed and shared tears with my doctors. I am really close to 4 of my doctors and they go above and beyond! They are always trying to figure out everything and take every symptom into consideration. They don’t question me. They have seen my deterioration from the time I entered their office to now. There are some doctors and nurses that I don’t want to have contact with. I am not sure how or why but sometimes there is just a huge misunderstanding with chronic illnesses. I am not faking if anything I downplay everything and my doctors know that. They see how much pain I am in. After all these “bad” appointments it just makes me want to write my own brochure or whatever to them and explain to them about my conditions. I just really don’t understand why in the medical field there is still so much confusion and them thinking people are faking this. It’s frustrating and things have got to change.
After this appointment I learned somethings about myself.
1. Not everything is my fault
2. I really did NOT bring this upon myself
3. I have the right to say NO or leave during an appointment
4. I need to speak up and be more vocal
5. I need to raise more awareness somehow during an appointment with those that don’t understand
I am so sorry if you have ever experienced anything like this. If you haven’t I hope you never have to.
If you have ever experienced this and have any invisible or rare or auto-immune disease I would really appreciate if you would comment on this using hashtag #IamNOTinvisble
My hope is using this hashtag will create more awareness as it’s a common hashtag for illnesses and I know that I am not alone in this because I have heard from the #spooniecommunity that these appointments happen all the time.
If you don’t want to comment or anything that is totally fine! No worries!
“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” – Joshua 1:9