Lucky for me I have always lived outside the box. I now think that is how I am surviving living with this crazy Thyroid Disease. Seems I have always thought and done things different than other people. I have always had a sense of humor, Thank God. I can always laugh at myself. And I think I am more compassionate to others than many people I know. I hate to hurt a person’s feelings and I hate to get mad. When I have let go and told somebody off…well I am not nice at all. So I have always controlled my temper and my mouth. But then things changed in my life. Well by the time I was 50 I had seen a lot of change in my life already. I had a husband in the military and lived from the East Coast to the West Coast and in between. I raised 5 children on very little money. Had 2 very bad marriages and survived. Than I was lucky enough to marry a wonderful man. Lucky because he has been my anchor and my life line living with my Graves’ Disease and my TED. But as I said my life changed…it changed in a way I could not control. I was lost. Everything that happen in my life before I got sick was something I could control and or take control of. Before I was told I had Graves’ Disease I noticed small things. Things were just not right but I could not put my finger on it. Now years later I know it was the Graves’ Disease starting.
My hands started to tremble. I first noticed it while at our club after a meeting. We had sat at the bar for a drink. I went to pick up my glass and my hands were shaking. The bartender noticed and asked if I was cold. She would turn up the heat. It was then I realized I was not cold. Some of the people around me had on their coats. Even my husband. I was actually very hot but I was not sweating. I thought it was a hot flash. But , no this was different. The heat was intense. My husband even made a remark about my face being so red. So I forgot the incident…no big deal. Just a hot flash and a little hand shaking. Shortly after that I went for a check up as I was feeling very down and just not happy. I was crying for nothing. That is not like me at all. I was getting mad for little things and blaming my husband for things like opening a window when I did not want it open. Also not me. So I told my doctor. Well he was one of those doctors you rarely hear about that do not pay attention to anything you say. yeah right. You have all had this doctor. He wanted to put me on anti-depression medication. Also wanted me to see a head doctor. Well I was talking out of my head. He went so far as to have the suicide hot line and nurse for the head doctor call me for an appointment. Give me a break. I did NOT feel like killing myself. I may have wanted to wring a neck or two…but not my own. Yet I have to admit I was pretty depressed. I was just not any fun to be around. I did not even want to be around me. I did not like me.
Than one day I had a doctor appointment and my doctor was on vacation. That was eighter the luckiest or unluckiest day of my life. It was a week after my 50th Birthday and I was seeing a strange doctor. Not to say that my regular doctor was not strange. But that is another story. Any way this doctor walks in and shakes my hand as introducing himself. He looks at me funny and hands me the tissue box. He tells me to put a tissue on top of the back of my hand. Now I know this doctor IS strange. Well low and behold the tissue falls off my hand as I am shaking so bad. We do the other hand…same thing. This doctor asks me a few questions reads my chart some more and than tells me he is ordering blood test. I go home and think …hummmmmm that was a very strange doctor visit. The very next day I get a call from this doctor. He ask if I could come in right now. I say “Right now…right now????” He says yes. So I go in. He tells me….”Young lady ( I like this guy already as I am old enough to be his mom)……You have Graves’ Disease. Well now I don’t know if I like him so much. Graves’ Disease????????? What the…… Is that?????? So what does this mean? I had so many questions but I could not think straight. He did tell me that he wanted to tell me right away since my doctor would be back in a few days. He explained a little…not much. He did tell me to look up this disease on the Mayo Clinic on the internet if I had it. He could not do or say much because I was not his patient and my insurance would not let me change doctors. Otherwise he would have been more than welling to treat me.
Needless to say he knew And I knew my regular doctor was not going to help me much. Over the next few weeks I did go back to see my regular doctor and his treatment for me was the same…anti-depression pills. I would not take them before and I was not going to start. I walked out of that office more than once crying. The last time my daughter was with me and she told the doctor a thing or two or three. I never went back. I started now on my long hunt for a good doctor to treat me. I also started my research into what the….is Graves’ Disease????? I joined online groups trying like the others on them to find answers. Some of these Graves’ Disease people are still in contact with me and we still help each other. So, in the mean time other things are happening to me. I start falling for no reason. Once I fell right before going up the few steps to my house. I had only had one beer….so was not drunk. I was not on any medication and I did not trip. My legs just gave out. My husband had to sit with me for a good 15 minutes before I could get up. I was just not myself. No matter what I did. The only time I could smile was when my grandkids were around me. So I tried to keep them close. They helped me sooo much. AS long as I was playing with them I seemed to be ok. Well, to continue. I lost a lot of weight in a very short time. I liked that and should have been really happy about it. But I was so tired and my heart was beating so fast…like I had been running. I could not do my job as it took a lot of driving and walking. I had to hire and train people and talk to mall managers. A very hectic but wonderful job that I loved doing. But it was harder and harder to do. Time went on and I got my goiter I then took the horrible RAI. Which to me was not so bad. Better then getting my throat slit. But, that is also my very own opinion. So if you had your throat slit…please don’t get upset. I have nothing against it as long as it is not me. Since I believe my TED started before the RAI I will not say to much about if it did or did not right now. So I now have TED and as most of you know by now I am now hypothyroid s well. Which means my whole life has slowed down. After Many months of being in the hot stage with TED I finely got to the cold stage. Well that is good I think. Maybe my eyes will now settle down to look normal again instead of me looking at somebody like they just scared the …. out of me. But before the eyes decided to settle down my eye doctor advised me not to drive any more. I was a danger not only to myself but others. I was so cock eyed I could not se straight. Ahhhh some of you heard that saying before. But, I was not drunk and usually that saying meant a person was really drunk . The reason I tell you this is because if you do not have Ted and do not know what the heck I am talking about…but you have been really, really drunk before. Well, you can better understand what it is like having TED. You not only see cock eyed you look cock eyed …with red tearing eyes. Your face is swollen and red. Well you look and act like you are drunk.
Yes, I know I do tend to get off the subject. My mind starts to wander and goes in different directions. Much like my eyes. They tend to also wander and go in different directions. Not so much now after 9 eye surgeries but it still does happen. So where was I?? I did start with being outside the box. Having Graves’ Disease or any Thyroid Disease for that matter makes you live outside the box. Not only live it but think it. If you do not your life will be so much harder. You have to learn to live with this disease and make adjustments and compromise. You have to give up things and people in your life. You have to find new ways of doing things, creative ways of doing things. You have to slow down and take it is and rest more. You have to exercise and watch what you eat. You have to learn to avoid stressful situations and stressful people in your life as much as possible. You have to try to have more patients with others and not be so hard on yourself and others. You have to accept your have a disease that not everybody will understand or even try to understand. You have to learn to accept the fact that people will criticise and well in some case’s actually call you a liar or tell you, you are lazy and not trying hard enough. You must NOT blame yourself for being sick and having this disease. None of us asked for it . But sorry to say there are people out there who will blame you. If you are new to this disease you will go through the next 5 items listed believe me I did. And if the list looks familiar well it should. It is the same list that is used in for people with something untreatable. But it fits.
New Patients Feel:
As Bob the Builder said “Can we do it?…. Yes we can!”
And so I leave you today with something to think about. Live out side the box. It is not so crowed with negative people.