First of all I was taught to be a Soldier and it too a lot for things to get to me so when I became challenged with Fibromyagia I still tried so hard to be what we called in the Army HOOAH! HOOAH! LOL.
There were a few instances since I have been over here in the US that I have had some of what I would call, "issues," but my caregiver would deem them to be, " Oh hell no you will not continue to be putting up with this kind of treatment issues and enough is enough we are telling."
The first incidence was when I went to a Neurologist. This Doctor knew my condition and had read my medical records but I found it awkward for her to ask my caregiver to leave the room being that she has to communicate for me as well as comprehend information for me, and the she proceeded to ask me to walk across the room and I came to her in a wheelchair, but not only walk across the room on my feet but on my heels then on the tip of my toes, which is where I began to draw the line and tell her she was crazy, I had already kept telling her I could not do it.
The second incident was when I went to the emergency room. I had gone because I was in severe pain and I could not move at all. Pain at a 10 was my norm but pain at a 20 and not being able to move at all or even communicate was not my norm, everything had just shut down on me. In the emergency room when the Doctor first came in he asked what I was there for and my caregiver told him that my Fibromyalgia had gotten worse along with all the other list symptoms, and then he said, "what do you want me to do? I read her medical record and she has exhausted all of the medications that I could have given her but nothing has helped." Now, okay duh , you are the Doctor, go figure. Anyway, since I had a lot of complaints of pain in my hips and have known bilateral bursitis flareups, the Doctor decided to start there by getting some x-rays, draw some labs, then start me on an IV with some nausea meds, lactated ringer, and the highest dose of dilauded. The dilauded never worked for me, it doesn't even make me twitch. Time went on and my caregiver got hungry and she spoke to my nurses and explained to all of the that It was hard for me to understand and communicate so if they need anything please talk to her now or wait until she comes back, she will be gone for 15 minutes. All the nurses cleared everything with her and all was good. I was good at the time as well. After a while I had to use the bed pan so I pushed the bell which was taped inside my hand to my finger, a nurse came in and I got her to understand the best way I could what I needed then she got help from 2 more nurses. When I used the bed pan it did not feel right but I could not explain to them what was wrong so I moaned. They rolled me and took the bed pan out and put a small plastic pad up under me. I still did not feel right at all. All the nurses left as I was still moaning. I began to get very distraught and began to cry, I knew something was not right so I rang the bell again. The same nurse came back in. I tried over and over through tears exhaustingly to get her to understand and I twisted as much as I could painfully still moaning and crying, and finally she pulled the sheet all the way back and saw that I was lying in urine from my head to my feet. I was so very upset. She asked for assistance to change me and 3 other nurses came in this time I wanted them to wash me with soap and water and tried to tell them but they did not understand or just did not try to listen. They put on clean linen and a clean gown then wiped one side of me with water and a rag and did not touch the other side at all, I cried through all of this like a baby, I was upset, I was distraught, I was humiliated. My caregiver returned and I was crying so hard. I summoned her to come over to the bed and let the rail down so I can just hold her hand and in the words I can express and she understands, I begged never to leave me again, and that I was so sorry. I just kept saying, "please, please, don't ever leave me by myself, I am so sorry," over and over again. She kept asking me what happened? Then once she got me calmed down enough to tell her all Hell broke loose and she went and got the head nurse and the Doctor (who by the way was about to give me more medication because the last dose of dilaudid did not work, but I refused) to have me discharged so I can go home and she will take care of me at home. She just told the that the nurses let me lay in urine and instead of cleaning me up the first time they tried to cover it up with a little pad. So they discharged me and my caregiver took me home and took care of me. It took me 2 weeks to get back to my normal 10 but I made through because I am a FIGHTER.
The third incident was when I went to see a Psychologist for my initial visit. Let me say that in my medical records my (caregiver/niece) and husband have Power of Attorney over my Medical Care. They have to answer questions for me and talk for me because I can not get words out, I am very confused, I do not comprehend well, so on and so forth. Now when the Psychologist called my name to come back my caregiver/niece was pushing me in the wheelchair to go back and as soon as we get up close to the Psychologist the first thing she says is that my niece can not come back and then my niece tells her that she goes in with me to all my appointments even if I am having a Pap Smear, LOL. As we begin walking to the back she asks can I walk and I say no not today then she says well her room is too small to accommodate me but she will see what she can do, and my niece taps me on the shoulder. When we get to the office she lets me sit behind her desk and she sits on her couch with my niece then asks me what am I there for and why didn't the Warrior Transition Unit have me see there own Psychologist? After that she began to tell us she was married and she had a set of twins and was 14 weeks pregnant with her second set. Now all this time has passed and I am wondering if this visit is about me or her??????? She eventually asked me what I was going to the Psychologist for and I told her it was to help me with coping mechanisms. I am finding it quite difficult. She then says again I just dont understand why you're here at the hospital and not at the WTU which is the Military Medical Unit as oppose to the Military Hospital on the Military base or the VA Hospital. She told us she will have to call over to my social worker to find out why they are not seeing me over there. Now never asking many questions about me or getting to know who I was our meeting was over. The Psychologist says she wants us to make an appointment to see her in 2 weeks and she will be sure and prepare the conference room in hopes no one gets upset that we are using it to accommodate me, but not saying that they can not accommodate Soldiers in wheelchairs but she thinks that it would make me more comfortable...... HMPH, how would she even know if she never asked????
Food for thought:
If you ever feel like something is just not right you are 9 times out of 10 correct. I say follow your first mind. Senses are an amazing gift we all have and need to enhance. The sense I am referring to the most is Spirit. You can sense a Spirit that is not right as you approach them just like dogs can. As you grow more aware of the intensity of your Fibromyalgia like I have you will learn how to take yourself away from the pain so to speak, not saying you are not hurting, just saying you can relax and meditate to the point where there are things that can not break your cycle. That is what I have done for so long and did not know how to shut it off but this time I was hurt because I know I need to talk to a Psychologist, which is the reason I sought after one. I told my squad leader of the incident and was told to go to the hospital Ombudsman to file a complaint. I do not want these types of things to happen to anyone else. They could happen to someone who does not have the ability to fight back so I feel like I have to stand up for them not just myself. These things should never happen but always do more than we know. If we do not stop the abuse, misconduct, disrespect, etc... then WHO WILL??????
If you