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It all started about 2 years ago when I was doing my hair and my regular bathroom mirror things. I noticed that the right side of my face "seemed" a bit smaller than the left. Hmm, must just be the way I chew. I continued on for a couple of months not really dwelling on this issue. I then mentioned it to a friend and asked, "Do you see anything wrong with my face?". My friend reassured me that I was beautiful and no there was nothing wrong. I once again continued on my regular life routine. I could not help every once in a while really slowing down in the mirror to get a good look. I started to really wonder. I would tell myself things like, it's the way I chew or maybe I could have at the worst a cyst. I started to become concerned after chewing on the other side, did nothing to help me out. The change was so subtle that I thought I was just worrying about nothing. I had my annual exam coming up in a few months, so I decided I would wait until then to discuss it with my regular doctor.
During the wait, I started to ask a few close people if they noticed anything. My mother would say, "Oh honey, you're so beautiful you have nothing to worry about". My older sister would just look at me and say, "I don't see anything". I personally believe they just didn't want to say anything. Then about 1 month before my appointment, I was at work in a meeting and a friend/co-worker looked at me and said, "Who hit you?" I asked him what he meant and he pointed to my right side and said it again, "who hit you. You have a bruise". I told him no one, I was just stressed out. I didn't know what to say. At this point my concerns grew greater. I worried all night at work. I looked in the mirror every chance I could and at all the reflections that I could find. When I got home, I sat my boyfriend down and told him I was scared there was something really wrong. I told him I thought I had a tumor or cyst growing in my face. I begged him to look at both sides and feel and just be honest and tell me what he saw. He did this and he finally said, "Yes, I see what you're talking about". He told me it looked like I did have a little bump on my cheek bone. We examined my face for a while, compared and came up with all kinds of silly little reasons that maybe could be the cause. I felt a little better. It couldn't be anything real bad.
I looked forward to the appointment now, I was so concerned and I just wanted to fix it so no one else would notice it. I was embarrassed about it. The night before my regular doctor's appointment, I was coming out of the bathroom after brushing my teeth and of course looking my face over again, I said to my boyfriend jokingly, "you watch they will tell me I have some disease or something". I will never ever forget those words, ever.
I went to my appointment and had my regular exam and then my doctor asked me if I had any other concerns. I told her there was something wrong with my face. My doctor moved her chair closer and began examining it. She asked me what was wrong. I explained to her that over some time, I have noticed that the right side was getting smaller and I noticed a bump appear recently. She took both her hands and felt both sides of my face. I remember looking into her eyes just waiting to hear what it was. She then said, "I don't see anything, maybe it's the way you chew". My eyes immediately filled up with tears and I told her, "No, there is something wrong". I told her I thought I may have a cyst or something. Once again she felt my face and still disagreed in a kind way. I pushed the issue again explaining that I knew my body and I knew my face. I continued to have watery eyes and she said, "OK, I will send you to a specialist and see what they say". I was so relieved. I am not sure why, I still had no answers but I was relieved. I went home in a fine mood and just simply called and made the appointment with a plastic surgeons office filled with specialists, Plastic Hand and Surgery. I again waited for this appointment to find out what was wrong. I believe now that the stress I was under to know what was wrong, actually made it progress faster. I began to have a darker tint on the right side of my face. I noticed so many things in this time because of looking all the time and looking for any little thing I could. I waited for about 2 weeks. In this time, only one person made a comment and it was the same person who thought someone had hit me. He had told me my face looked bruised. I started to really not like this person. Not because he was being mean or unlikable, it was because he was noticing this thing that was in my face. I would just try to blow it off as stress and hoped he had believed me. He was kind enough not to push the issue on me. I dreaded it when people would talk to me, I could notice their eyes moving amongst my face. Were they looking at it? What did they see? What the hell was in my face!
I worked on the day of the specialist visit. I had already spoken to my mother and she knew I was going and she knew that my boyfriend would be there with me. We got out of work at 3 pm and got right to the doctor's. Once there I did the regular things as signing in and filling out all the regular paper work. We sat and looked at magazines while I waited and bounced my leg up and down waiting to end this wait. Finally they called me. We both followed the nurse into the exam room where I sat on the exam bed and my boyfriend sat on the chair. The nurse was nice and she asked me what brought me here today. I briefly explained and she told me the doctor would be in shortly. Once again there we were waiting in silence. I remember telling Dan, my boyfriend that I was scared. He assured me we would be OK and I was going to finally find out. He told me not to worry and how much he loved me. I could not sit still. Then the door opened and the specialist came in, grabbed his chair on wheels and slid right over to me. I was sitting on the end of the bed and he was at my knees almost looking me right in the eyes. Little did I know sitting there at that moment in time, I would hear the worst and most surprising, scariest news of my life. The doctor asked me only a few questions as he felt my forehead, my cheeks, my chin and nose. He asked me, "How long have you noticed these changes?" "Have you ever injured your face severely?" He told me to open my jaw and he placed both hands on my jaw bones. I remember continually looking him in the eye and then he ran his thumb from the middle of my forehead down towards my nose. He said, "You have Rombergs disease".
All I remember at this point was crying. My first question was my biggest fear. Was I going to die? No. I then asked if this was going to be painful. No. How did I get this? He didn't have the answer that question and I soon learned he didn't have many answers or reasons for this disease. I continued to cry. I just wanted to get up and run as fast as I could. Dan got up and came over to me and tried to console me as he had many times before when something had upset me. This time, the only time, I pushed him away and told him not to touch me. I didn't want him to touch me because I had some "gross" disease in my face. I was not worthy anymore. At this point the doctor put his hands on my knees and told me I was going to be all right. I didn't want him to touch me either. He was bad. He told me I had a disease just like it was nothing to him. I asked him how he could look at me and touch me for 3 minutes and tell me that. He told me he was sure mainly because of the dark line I had on my forehead. He pointed out that in the middle of my forehead starting at my hair line, I had a line going about 1 inch towards my nose. This was his proof. The doctor then said he would go get the other specialist to give me a second opinion. He left the room. I cried and buried my face in my hands. I began to say how bad I wanted to get out of there. Dan sat in silence and tried not to cry himself. We both just sat there while I cried. Next thing I said was I wanted my mother. Here I was 26 years old crying for my mother. I didn't know what to think or feel. So many questions were running through my mind. What was going to happen next? What was I going to look like when I was older? Would I lose my boyfriend, the one I wanted to spend my life with? Did I want him to have to deal with a girlfriend who had a disease? I couldn't believe it, I had a disease and the word took on a whole new meaning.
The doctor returned shortly with the other doctor. He introduced us and we shook hands. This guy sat down as well and pretty much went through the same routine. Touching, looking, moving my neck and feeling my jaw. I kept eye contact with him as well. I was hoping he would maybe feel the cyst I had thought it was going to be and things would be OK and I would leave laughing about the situation. But when it came out of his mouth, "you have Rombergs", it was no surprise. I had stopped crying at this point but continued to feel as if I needed to run. I again stated in front of all of them, I wanted my mother. I couldn't remember the last time I had cried for her.
The doctors then explained to me that they could not help me, they don't deal with this type of disease. They told me they actually have never seen it. This statement only contributed to my fears. They gave me a name of a doctor who worked out of Mass General Hospital in Boston, Massachusetts. I lived in Portland, Maine all my life and was told that we had one of the best hospitals in the world, Maine Medical Center. Why would they be sending me to Boston? They explained that there was no one in Maine that dealt with Rombergs. This was not getting any easier. The second doctor said goodbye and left. The doctor who was still there gave me the name and number to the specialist in Boston, told me again I would be OK and said I was all set to go home. He left the room. I began to cry again and sure enough Dan attempted to hold me and I shrugged away, "Don't touch me." I got up and said that I needed to get out of there. I was now shaking uncontrollably. We exited the doctor's room, handed the nurse my paper work, received my copy back and took a look at it as we walked out in silence. "Newly diagnosed Rombergs Disease." That's all I kept reading over and over until I got to the car. We left and headed home for the 15 minute ride. On this ride I cried loudly and continued to replay the first time the doctor told me. I couldn't believe it. I didn't want to have this. I didn't want to deal with this horrible thing I had no answers to. I was so scared, the most I had been in my life. I remembered just a while back I had said to my mother, "Mom, you're lucky to have 6 kids and none of us have illnesses". Here I sat with a disease. No ear infections or flu's this time.
When we got home I walked in and grabbed the phone to call my mother. I needed to talk to her so bad. I called her cell phone first because she always answers that and if she didn't she would surely answer the house phone. The phone didn't even ring. Automatically her message came on. I left her a message to call me. I tried to sound as normal as I could. I hung up and called her house. No answer. I sat on my living room floor and started to cry. What was going on. She knew I had the appointment. She always answered her damn phone, why not now? Why? Why would she do this to me? I continued to call over and over again feeling myself fill up with hate, while all these things continued to go through my mind. After about 20 minutes of listening to ringing sounds and messages to leave messages, I threw the phone. I started to lose it. I grabbed the phone book and began to look for her work number. She had left for the day. What was going on? Was I meant to suffer badly for some reason? I began to scream and yell. I have never felt so much anger. Dan tried to comfort me but was shut out as fast as I could do it. I called my father at work and just yelled uncontrollably at him, "I have a disease!". He asked me what the hell I was talking about. He had had no clue. I didn't need to tell him I had been worrying about my face. It was not that big of a deal before. We just ended up yelling at each other and I hung up. I told Dan we needed to go to my mother's, a drive about 40 minutes away. He grabbed the keys and we left. Three minutes into the drive, I began to cry again. I couldn't stand the traffic. It was the same rush hour traffic I had dealt with thousands of times before. This time was different. I could have gotten out of the car and started to scream at everyone. Scream and yell. I told Dan we needed to go back to the house. I said I was losing it. I couldn't be in the traffic. He turned around we went back home. I immediately grabbed the phone and again continued to call desperately trying to reach my mother. I didn't understand why it was so desperate for me to talk to her. I knew she couldn't take it away or give me any answers. I still don't to this day. With no answer, I sat the in silence in the middle of my floor. I looked up at Dan and quietly asked for him to try and take me to my mother's. I knew at this point I needed to calm myself down. My head was pounding and my eyes were swollen. I got up and hugged Dan. I hugged him and when he hugged me back, it almost felt as if my legs were Jell-O. We hugged for a couple of minutes while I just cried. We got in the car and left for my mother's again. The ride was one of the longest yet.
As soon as we pulled into the driveway before we came to a complete stopped I jumped out and ran for the door. Once I got there my mother had noticed us pull up and met me there. She opened the door and knew something was wrong. I looked at her and began to cry harder than I had yet, words barley making sense. "I have Rombergs Disease, I have a disease Mom". She grabbed me and held me saying over and over, "oh, Tricia, oh my baby". I cried and she held me. It felt good and I was so glad to have gotten a hold of her. I then asked why, why didn't you answer when you knew I had the appointment. She explained her cell phone went dead because she used it so much and the house phone wires outside had burned. They were old and stopped working that day. The look in her eyes showed how awful she felt. For that reason and for the simple fact her baby had this awful disease. We sat in the kitchen while I calmed myself down again. She asked me the same questions I asked the doctors myself. While I told her I had no answers and the doctors had no answers, I noticed her fear grew for me. It continued to grow for myself as well. We talked for about and hour and then decided to take a look on the computer. We got on a site that had very little information about the disease. I didn't care too much for it, so we got off. I stayed there for a few hours and we talked. When I decided to leave, I did feel better. I felt a little more capable to control myself and try to slowly except this disease and do what I would have to do to take care of myself. This was going to be a road I had to take.
I went on with my daily routine, work, friends and all the usual things one would do. I didn't call the doctors at Mass General for a little while. I just didn't want to do it. I can not explain why, I just was not ready. My boyfriend brought it up once or twice saying that he would support any decision I made. Hinting I should call and we could move forward. My mother also supported me and let me know it was up to me. I am not sure how much time went by before I called but I did not do too much talking about this disease in that time. Finally I called and made the appointment. It had been about one month. The appointment was scheduled for about three weeks after I called. Time went by slowly and I had mixed days where I was excited and days where I was scared. Scared to hear anything else and scared not to hear anything else. My mother and my boyfriend drove down with me. The ride was long and I did a lot of talking. Once again it was lots of mixed feelings. I had incredible support and when we got there, I guess you can say I was ready. As usual I filled out the paper work and waited. The wait seemed long and then they called my name. I looked at both Dan and my mother and asked if they both would come in. They did. The doctor was nice and he did the same as the last specialist, looked, touched and asked questions. He too, confirmed I had the disease. The blow was not hurtful this time, it was numb. I asked some of the questions I had come up with while waiting. I asked if we could stop it. No. I asked if it would stop and he explained the "burn-out" process but also told me he didn't know for sure. Of course, I figured no one knew much on this disease. Then the doctor told me he only dealt with severe cases and mine was "mild". What did he say? I was so excited. Just that one word meant the world to me. I felt a huge relief. My mother was excited and so was Dan. They kept saying, "See you'll be OK". The doctor gave me the name and number to a doctor in Philadelphia, Pennsylvania. His name is Dr. Louis Bucky. I was willing to travel across the world to find that one doctor who could help me. Save me, was how I felt. So from there we shook hands and left. The drive home was great. I felt better, I had high hopes and I was feeling almost myself again. I had not felt myself since that day when the doctor told me of the disease. Dan and I came up with plans for the travel and we decided to make the best of it. A mini-vacation. I continued to replay the words "mild" over and over again. Wow, a life line for me.
I called the doctor in Philadelphia and scheduled an appointment for about three months later. We decided to drive down. During the wait for this appointment I again noticed some changes. My forehead had atrophied, under my eye had and it almost looked as if my eye was getting smaller. I began to have minor pain in my face. I didn't like that at all. Was it the disease eating my flesh? I thought this disease didn't hurt. That's what I was told. I didn't tell anyone about that. I just didn't. We took some time off from work and borrowed my father's Dodge truck. We didn't have tons of money so we figured we'd just camp in the back of the truck which had a cover with windows. Dan and I left after work around 2 p.m. The drive down went fine. We talked a lot about the disease and what we were hoping for. The one thing that I couldn't bring myself to discuss or bring up, was what he'd have to deal with. What he was going to have to look at, if this disease went full blown. I wanted to tell him that when I got older and was supposed to get gray, well what was I going to look like? Would he still walk by my side? I just couldn't bring it up. I wanted to so bad. We got into Philadelphia around 11 p.m. at night. We drove right to where the appointment was going to be. It was easy to find and it relaxed me a bit more. We then drove to a store and grabbed a six pack to split. We found a hotel about five miles from the doctor's and we parked. I backed the truck in and shut it off. We set the back up with our sleeping bags and flash lights. Not to mention, Dan had brought a knife for protection, just in case. We then jumped back in the cab and began to sip our beer and relax. What a long drive. Next thing I know I see a police car pull up real fast. I rolled my window down and he came over real cautious and asked us what we were doing. For the first time I told someone other than my family, I had a disease. I was from Maine and I was here to see a doctor so he could fix my face. I handed him my I.D. and all the directions and info that I had with me. He looked it over and then looked at me as if to say, are you crazy? This officer then said, well it looks like we will have to keep an eye out for you. I thought wow what a nice guy. He explained that there had been a few car break-ins in the area. He then left. Dan and I kind of laughed about it, boy were we scared. I didn't think he was going to believe me. We then finished our first beer and continued to talk about what we expected from this appointment. I didn't want to be sent anywhere else again. We then hopped in the back and went to sleep. I slept well that night and woke up just in time. We got dressed and took off. I had to be there by 10 a.m., it was 9:00. We got to the office no problem and stood outside while I sucked down two cigarettes. Man was I scared. What was he going to tell me? Would he help me? We went in and filled out the paper work and waited. They called me in pretty fast. The nurse told me that the doctor would be in soon. Dan and I once again sat and waited. It is so surprising how much can go through your mind waiting for something like that. When the door opened again I remember seeing his smile. He had a real smile. Dr. Bucky. He came right over to me and he shook my hand tightly. I liked it. This man knew I had this disease and he shook my hand with sincerity. I think I even smiled for him. I already felt the pressure come off my back. He pulled up a chair and examined my face. He touched it everywhere. He was quiet but working. He touched my forehead, my nose, chin, jaw, eyes and my temples. He told me that I was his 6th patient and I had the mildest case he had seen. I was so happy. He was happy, Dan was happy. Tell me more, that's all I wanted. Keep telling me everything you know. Dr Bucky then told me what he was going to do for me. He explained what a fat graph was and how he would do it. He was going to take some fat from my thigh and place it where I needed it in my face. The doctor told me it was up to me when I would have it done. "Now!" That's the first thing that came to mind. He explained to me that I should put on about 10 pounds and then he asked me if I smoked. I told him yes and he told me that the surgery would not take as well if I continued to smoke. I quit when I got home. November 1st 2003, Dan quit with me. At that point I myself realized Dan meant what he had told me numerous times, he was going to be there with me through everything. Dr. Bucky was so nice to me and I was actually excited to have the surgery done. We talked for a little while about all kinds of things from my life to his other Rombergs patients. I left there feeling so good. Dan and I stopped at a corner store and got us each one of those famous Philly Cheese Steaks. We sat in that store and talked. I couldn't stop telling him how excited I was. Right there we had high hopes that I actually was going to be OK. And this doctor HAD seen other patients. He did know answers to some of my questions. To me at that point, he was my hero. We left and headed home both Dan and I feeling great.
I scheduled my surgery for the first week in March of 2003. Dan and I both got the time off. He had to work some swaps because I didn't want him to tell anyone really what we were doing. I told my bosses I had to have minor surgery but not what for. Dan just got the days off without explaining. The wait was awful. At this point my face was pretty noticeable. I was really thin on my right side and my muscles stuck out so much. When I smiled it was the worst. It's hard to explain but it looked like I had three little bumps with indents around them. My eye began to look smaller. I am not sure why, I believe it was from the atrophy to the fat in that area. I had a major headache I had never ever had before. It felt like my head was going to blow up. I couldn't move. I cried but that only made it worse. I became so self conscious about everything. Pictures. Oh God, the pictures. I hate to be in them. This was something new, I always would take pictures and put them in frames and hang them up. There are no new pictures up, they are all the older ones now. I loved to be in pictures. Smiling. That's all I did. I have slowed down some with my smiling and I tend to hide my right side with my hand when I laugh. I turn so my left side would face the person I was talking to. I always know when I am doing this, but I can't help it. I feel more comfortable. I just didn't want anyone to notice. The hardest was my job. I work in a juvenile detention facility. These kids are not here for being nice and I knew one of them would catch on and say some really mean things. Here I was 27, and worried about these bullies like I was back in school. It was hard. By this point, I had told a couple of close friends at work and when I was down or had had a really tough day I would go to one of them or both and they always seemed to make me feel better. Kath and Russ are their names and if I didn't have them around to support me, it would have been a lot tougher. Just to have Kath know what was up just in case someone did say something uncalled for, I knew she'd be there for me no matter what. It was something I needed, still do now. I will forever.
Dan and I planned the trip and had included my father. My dad was in denial. All he would say is, "Tricia, it's the year 2004, they can fix anything". He really wanted to be there and I wanted him there. Mainly because I knew Dan would have someone while I was recovering. Plus I knew Dan was nervous. He didn't show it like I did, but I could tell. So the day before my surgery, it was a Sunday, we picked my father up around 9 a.m. and we took off driving again. The drive was fun. We would laugh and joke or the two of them would reassure me that I was going to be fine. Nervous, yes, but more anxious to get it over with. I kept remembering on the last day of work before I left. I thought to myself "wow, next time I come back I will look normal again". We got to Philadelphia and grabbed a hotel room about one mile from the hospital. Easy access for us, plus they had a shuttle that could take us so we didn't have to drive and park. That night my father took Dan and I out for one of the best steak dinners we had ever had. Got back to the hotel and joked around some more and just had a nice time. I don't think I was very nervous that night. It all hit me the next day. I woke up early and woke Dan up. My father naturally woke up then as well. We got dressed and I started to rush everyone. I felt like I was getting angry and I didn't even know why. Maybe I did. We went down to the lobby to wait for the shuttle and there were about 20 people and I thought oh God, I am going to be late. I went up to the counter and asked if I would get to the Pennsylvania hospital by 8 a.m. They told me I would. I sat down and bounced my leg for a long time. I didn't feel like talking and I guess I can admit it now, I seemed to push the only two people I had away at that time. I just wanted to be left alone. Finally we got up and waited outside and when the next shuttle came, we jumped on. We were on our way. It took about five minutes to get there but it did seem much longer. When I got out of the shuttle my legs felt like jelly. We walked in, Dan holding my hand and my dad leading the way. Once again I filled out paperwork and waited. Waited. They called my name after about 20 minutes and they sent us up to another floor. The day surgery. Once I was up there, they had me change into a robe. Dan and my dad were still with me, thank God. After about 20 more minutes, another nurse came in and called my name. Was it time? No, I didn't want to go yet, I was not ready. I gave my dad a hug with tears in my eyes and then grabbed Dan. He hugged me and I felt so good in his arms. I did want to go, I could do this. This nurse took me to another floor and I got onto a bed. I was in pre-op. I had another nurse come in and explain who he was and what he was going to do. He started an IV and gave me something to relax me. I was shaking a bit and I guess I had an awful look on my face. He was nice and he asked me some questions on why I was there and where was I from. He tried to comfort me but I was just too nervous. Next thing I see is Dr. Bucky. Finally. I had not seen him or talked to him since the visit in his office, the first and only visit we had had. I was so relieved. He had a great big smile on his face and he sat right down with me on my bed. He asked how I was doing and I told him. I think I was smiling. He told me I looked good and my disease was still progressing slowly. He told me I was a beautiful girl and he would do the best he could for me. At this point he had me sit up straight and he drew marks with a purple marker all over my right side. My forehead, side of my nose, cheek and jaw bone line. He then drew some circles on the right side of my outer thigh and then said we would save the left in case I needed another surgery. At this point he said I would probably not have to go back and have this done again for about 2 years. Oh my God. I wanted to hug him and run and tell Dan. I couldn't go anywhere but I knew I was going to tell Dan first thing. I would not forget. Dr. Bucky talked with me for a few more minutes and then asked if I was ready. "Yup". He patted my leg and then he left. Then I was wheeled out, taken down a hall that I remember being scary, maybe it was just because I was scared but it sure looked gloomy. I was brought into the OR and my eyes were as wide as they could be. Another nurse in there noticed it and told me I had nice eyes. Next thing I knew, I was in recovery.
Waking up was tough. I remember wanting to just wake up. There were a few nurses around taking vitals and checking on me. First thing I remember was asking for Dan, could I see him? They told me I could in about an hour. Then I drifted back to sleep. I woke up and again asked to see him. Finally about and hour and a half after surgery they took me to another room outside of recovery. Dan was right there. I was so happy. He sat down and the first thing I asked was what it looked like. He told me that I had purple marker and some swelling. Does it look better? He told me it did. I knew it didn't but I loved him for telling me it did. I didn't have much pain at all in my face, it was my thigh. My dad came in for a while and then we all decided he would take the shuttle back to the hotel and Dan would stay with me. My dad was tired and he left. Dan and I sat there for about an hour and they told me as soon as I could go to the bathroom I could leave. I had Dan help me up and we went to the bathroom and there was a huge mirror. I was not sure if I wanted to look or not, but I did. What a sight. I did not look like myself. You could tell where he had worked and there was some swelling and bruising. It was not that much at all. I was surprised. The nurse came back and gave me some prescriptions for pain and for infection. Dan ran right then across the street to get them filled for me. When he came back the hospital released me. The plans ahead of time were for me to stay in Philadelphia Monday (the day of surgery) until Wednesday morning. We headed back to the hotel. Once we got there, I laid down and the two of them went to find a market to get me some soup and whatever else my little heart desired. I slept while left, only after examining my face and praying in the mirror to please, please work. Please, please stop. The next day I felt good and we took a tour of the city. We took it easy but I was a little sore. I didn't want to sit around. I got some looks from people, but I didn't care. It was obvious something was wrong with me but I figured I'd never see any of them again. So I tried to enjoy myself. I even let a stranger take a picture of the three of us. I have that picture today stored away in my personal journal. I went to the hospital on Wednesday and saw Dr. Bucky. I was again smiling. He asked me if there were any problems and I told him that when I smiled the right side of my lip would not move. He explained that he probably hit a nerve and that would go away. I told him my face did not hurt but boy did my thigh. I had the biggest bruise I had ever seen. It went the whole side of my upper leg. Black and green and blue and yellow. All colors you could imagine. That was normal as well. Off we headed for home sweet home.
Once we got home and all settled in my mother and younger sister stopped over. They were happy to see me and I was happy to see them. They didn't stay long because Dan and I were both so tired. After they left, Dan and I talked for a long time. We talked about the good and the bad about this disease. We still to this day, have not found many answers to our many questions.
This disease for me is an everyday reminder of many things. They can range from GREAT to the WORST. It all depends on the day and how I feel my face looks. I truly believe for me, stress can kick it up a notch or two. Headaches, God they can really hurt. I have lain in bed many nights with my homemade ice towels on my head. Freeze a wet towel and when the headaches are at their worst, take the towel out and it will mold to your forehead. If I cry, my disease shows up in my right eye so bad. I am afraid to cry for myself at times, because of this. There are days I just hate life because I have this disease and then... there are many days where I realize how much worse I could be, look, feel or really have to deal with emotionally. I am not alone. The pain goes away. There are ways to help hide this. The Rombergs group and all it's wonderful strong people who put their disease or their loved ones on hold for a moment to lend support or just an ear. To all of them, thank you.
When my tomorrow comes whether it is a good day or a bad day, I am thankful I am alive and didn't end up with a disease that would take that from me.
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