A New Week Ahead

Well today is now Monday and it's almost September. Where do the days go? I was shocked to see Halloween stuff out in the stores last week already. This means Christmas stuff will be out probably next week. ACK! I'm not ready to even think Holiday's! I had a busy week last week and I'm hoping this week can be a bit more on the relaxing side. The kids started school today. All the kids are now in high school. The youngest just started 9th grade. I can't believe it! They will all be in college before you know it. I had a good weekend for once and the pain level went down quite a bit. The weather changed here in PA and it feels like October. Our high today was only 70! This morning I was wearing a robe and slippers which is a huge change from just a week ago when I was sweating first thing in the morning. The cooler weather and less humidity has been nice. I just have a problem with it being too cool now..lol. Yes, too cool. I can't seem to win. I couldn't handle the heat and now I have trouble with the cold air. I was ok in the house but the cold hand problem started up once again today. Everytime I sat at the computer, my hand would get ice cold and then things would flare up. I had to keep moving lots today. I love this weather but nothing seems to work for me and it's very frustrating. I became quite sore again by 4:00 pm which is the usual. My day is done by then. I started having trouble walking and I ache everywhere. My legs are so tight right now that I can't move them to well. This is how it goes though. I can be ok one minute and terrible the next. It's a vicious cycle. One plus today was that I could see better for once! I wasn't even wearing glasses unless I was at the computer. The glasses really didn't do much for me today. I could see the same with or without them. It's crazy how my vision can change on a day to day basis..sometimes hour by hour. Well time to get up again..getting sore. Til next time...good night

Another Painful Day

The last couple days have been pretty rough. I've been in a great deal of pain and so swollen. I try to ignore it but it's so difficult. I try the best I can to keep myself and my mind busy. Today is another hot day which will not help any. I've had some awful attacks these last couple days. The sunlight hurts my eyes so bad which makes it difficult to go outside. I don't like lights, air, showers, to be touched, etc. It's not any fun..none whatsoever! I get upset because I love the outdoors and want to be outside but can't handle it. It's so frustrating! I've also been having a great deal of muscle spasms and I'm having some trouble walking. My gait is off entirely and I feel like I'm going to fall over when I walk. I get dizzy at times and my ears start ringing. Then I get this hot feeling all over and feel so sick. My vision gets so blurry and I can't see much of anything. I see bright spots and I feel like I'm going to pass out. I have a call into my neurologist and hopefully he will get back to me today. I have some questions for him. It seems as though they are really leaning for another diagnosis..MS (multiple sclerosis). It's another disease that involves the central nervous system. They want to look further into my eyes (optic nerves). They do not feel the damage to my eyes is from the RSD. This means more tests and more appointments. MS is another uncureable dibilitating disease. It has very similar symptoms of RSD. It just never ends....

A new week ahead

It's Sunday already..wow! I had a very rough week last week and I'm hoping this week will be better. The humidity has been so high every day and it just makes things more miserable for me. It's supposed to go down later today which I'm hoping for! I need some relief! I can't seem to tolerate the heat and humidity at all and I can't tolerate cold either...man I'm in trouble! I am NOT looking forward to the winter either. I also seem to be a walking barometer. Whenever the weather is about to change, I know it. I can tell when storms are coming and the rain..UGG! I don't like any kind of weather it seems. I think a 70 degree day with no humidity would be ok. I have finally got some sleep the last couple nights which is nice. I wake up in burning pain though and have to fight my way through the day. I got some more disturbing news last week regarding my eye problems. It looks like the Dr's are very concerned about what is going on and more testing will be required. It just never ends for me. Some of the eye problems are associated with the TOS and RSD but they feel something else is also going on. Now they are thinking that this may be triggering something else like an autoimmune disease or MS. I was explained that my body has been through so much trauma in such a short time. The TOS was so bad and seems to be causing so many problems. It caused the RSD and now I'm worried that I may have something else in the works also. My immune system is a mess and my nervous system has been greatly damaged. I'm a bit scared and upset because I don't want any more bad news and another diagnosis. I can't take anymore! I am trying not to think of it right now, I am having great difficulty with my vision though and I need to have these tests done but the Doctor wants to wait until we can calm down the RSD. It looks like I have been cleared for Ketamine treatment and they are working on getting me scheduled. I will keep you posted.

In so much Pain

I am mentally and physically exhausted today. My pain level is so high and nothing is bringing it down right now. I have 2 lidocaine pain patches on and increased my meds and still nothing yet. It's so humid out and I can't seem to function. I have such a terrible headache along with muscle spasms all over. I don't have much of an appetite either but I managed to eat some lunch. I just want this to stop. I'm so tired of it. I have been holding myself together but when I have multiple days in a row with absolutely no relief, it's very hard. I feel like giving up the fight at times because I'm not winning. I keep fighting though..I must have it in me somewhere. My vision has been so bad that my eyes hurt. My face is also red and hurts. Nothing about this is pleasant. I am trying to keep myself busy so I can get my mind off of PAIN. It helps to keep busy but there is only so much I can do. I am swollen up like a Macy's Thanksgiving Parade Balloon. I might just fly away soon! I am trying to make light of this and my son tries to get me laughing. He has been making jokes today and trying to get me to laugh. He's a great kid and such a big help. Right now I need all the help I can get!

Not Feeling Well

Well today is now Tuesday already..gosh, the days are going so quickly. The heat and humidity is not my friend right now. Yesterday was a very rough day and now I have another one today. My right hand was so swollen and I was in so much pain that is was unbearable at times. My neck weas having muscle spasms and I was trying everything I could to ease the pain and get it to stop. Nothing worked. By the evening I was ready to cry. My daughter and I went for a walk after dinner and I got one whole block and was ready to quit. I kept going though and went for a loop around (slowly) but i made it. I am trying to tend to other things around the house and the kids but it's not easy. I don't feel well right now and it's so hard to keep going. I want to hide it and be "myself" and not complain about pain and not being able to do things. I knew this morning it was not going to be a good day. I took a shower and almost passed out. I couldn't stand the water hitting my body and I got real dizzy and this sick feeling came on. The bathroom was spinning and all I could see was nothing..everything was going black. I stayed up and got done with the shower quickly then went and laid down. I just am not feeling well from the humidity and hopefully it will get better. I have a terrible headache. I just can't seem to win..either it's too cold or too hot. I can't stand any temperature it seems. This is so hard to deal with but I think I'm doing quite well. I am so glad to have the support from all of my family. I truly need it right now and I thank all of you. :)

Feeling Down

It's Saturday and what a week I just had. I am so exhausted mentally and physically. My mind and body just is ready to shut down completely. Right now I feel like crying so I thought I would try and post to get my mind off things. Today I am having trouble with feeling things correctly. I was told that my shower was extremely hot but it just felt warm to me. I am having trouble with eating and drinking today because I can't taste things right at all. Everything tastes either too sweet or blah. I have been going crazy trying to find something to drink. I haven't stepped outside all day because it's too hot and humid. I can't tolerate the humidity. I can tell as the humidity rose and the temperature went up, that just being inside made a difference in my pain level. My pain level finally went down this morning but now it's back up and I'm very uncomfortable. My headache is severe and I can't see too well. I am having trouble thinking and concentrating. My daughter has had a long week as well and we are all tired. I want to cry but yet I don't. I have such a mixed bag of emotions with all of this. I completed the 24 hour holtor monitor so I am finally finished with the appt's for ketamine clearance. I still need to follw up with the neuro opthamologist at some point to see what's going on with the optic nerves. I just can't go through the tests that they want to do because it stirs everthing up and I get in this huge flare. The Dr told me that the tests can wait at the moment but they need to be done. The heat and humidity flares RSD badly and we are trying to get it to calm down. The Dr told me that I need to stay in a cool environment and regulated. Temperature changes are extremely bad and make things worse. So the eye Dr is on hold for more testing at the moment but they do need to be done. I'm also afraid of how bad the outcome will be. I noticed this morning that I can barely see out of my right eye. Everything was a blur and I couldn't make out what was on the television. I hate having this..I hate all of it! I'm just so darn frustrated because there is no cure and I have to live with it. I am doing my best and I will have my ups and downs. Today is a down..it comes and goes. I'm hanging in there though and you know me..I will never quit or give up! I'm off to help with dinner.

A Very Long & Stressful week

Today is Friday and the week is almost over..THANK GOODNESS! I've had one crazy week and it's not quite over but things have calmed down some. I have not been getting much sleep and I'm in burning pain today. My entire nervous system is out of whack today. My heart, breathing, digestive system, eyes, skin and hearing are all out of whack. I had a rough day yesterday which didn't help. I'm also still having a tough time absorbing everything that is going on with me. I am worried but I don't even know how to express my emotions at times. I have so much going on that I just want to laugh at times. I guess laughter is the best medicine so I will keep on going and still be the "happy Tammy" that I have always been. I'm not always happy though and I do hide it well. I just have so much going through my mind right now. I wish I could wave a magic wand and make this all go away! Well I have to head off and get myself hooked up to a cardiac monitor. My daughter is also wearing one today so we are a pair! She is wearing it due to her cardiac issues and I have to wear one as part of my clearance for Ketamine. They just need to watch how my heart works and my blood pressure is for over a period of 24 hours. My daughter has worn these monitors many of times so she is helping me put it on and we are hooked up together today. At least it's nice weather and we are going to try and enjoy the day!

Frustrated

I haven't had much time lately to sit and post. I have so much going on right now and I can't think straight. I have had a week of bad news and lots to deal with. I went through my last test on Tuesday for Ketamine clearance and it was HORRIBLE! I never EVER want to do that again! My daughter went with me and I was so glad she did. She sat with me when the Dr explained the test and then when it was over they called her back to the room. I was so pale and sick. It was called a "tilt table test". They strapped me to a table and I layed flat for a while then was moved to a standing position while strapped in. They monitor blood pressure and heart rate. Half way through the test I was given nitroglycerin. ACK! That was what made the test horrible! OMG! I will admit that I cried and begged for them to stop. I was told "only 6 more minutes". That was a LONG 6 minutes! I am cleared for Ketamine treatments but I do not know when they will start. I spoke to my Dr on Monday and he told me that my RSD is pretty bad and they are very concerned. My optic nerves have been affected and I have optic nerve damage. Once this occurs, it is not reversible or able to be repaired. I have a huge amount of color loss as well in the right eye. I was tested and I only got 2 out of 8 correct on the color vision test. So far it seems to be in relation to the TOS & RSD. I will need further testing to see if they can stop this somehow. It's a huge concern and I am very upset and worried. I haven't really absorbed everything I don't think..it's just so much to have to go through. I am under alot of stress right now also which does not help. I am trying to relax as much as I can but it's not easy. I took my daughter and her friend to the mall yesterday which was alot of fun. We had a great day (except for having a flat tire which started the day) UGG! Then I had planned a surprise birthday party for my daughter last night which went very well and she was VERY surprised. She had no clue about any of it. It made for even a better day! I was so glad to see her happy. We had a great evening except I was very tired and all the noise from everyone talking and so much going on kinda stirred everything up for me and I was in lots of pain by the end of the night. It was worth it though!

So Tired

I am soooo tired and going to head for bed. I just had such a rough day that I haven't been able to calm myself down yet. My mind is racing away. I was up at 5:30 this morning and been on the go since. I have had an extremely busy week and been hearing lots of bad news but yet some good news. I will explain more tomorrow when I can think more clearly. I'm just getting a little bit overwhelmed right now. Good night.

Wanting to Cry Today

I only have a minute to post. I just had an emotional breakdown this morning. I didn't sleep well last night. We went to a movie as a family yesterday and the previews were so loud that it set off my nervous system in a horrible way. I had a huge attack and started crying. I went to the bathroom and just cried. I was freaking out. It took me a while to regain composure. I was having a tough time getting myself back to the theater. I did it. My husband told me to go get toilet paper and put it in my ears. I did that and it helped. Problem was that my nerves were already pissed off. Last night I couldn't even stand being touched. It was so painful if my husband just touched a toe on either foot or any other part of my body. I was so irritable all night and this morning I felt sick. Severe headache and my entire system is screwed up. I took a shower and cried. I got out of the shower and the AC was on. OMG that did not help! I ran to the bedroom to get away from cold air. I am under some stress right now which is not helping. I am battling lots of things at the moment and this is going to be a very difficult week for me. It's very hot and humid today and I have a cardiology appt tomorrow that is on my mind. I'm just a mess at the moment but I'm staying touch.

Stressful Day

I am finally sitting at the computer for a minute. I have had a busy day on the phone and I'm so tired and in so much pain right now. My medicine isn't helping one bit. I've been on the phone most of the day today dealing with all sorts of things. I have a severe headache and my entire body aches. I have stabbing pain in my neck and when I move it hurts more. My right hand is killing me. I tried to pick up a piece of clothing and couldn't even hold on to it. I couldn't grasp it so I dropped it. I haven't ate well today because the pain is so bad that I don't have an appetite. I am on fire and I feel like crying. I am awaiting my husband and daughter to arrive home shortly and we are then going to subway to get dinner. I'm looking forward to seeing them shortly. My son just helped clean the bathroom and other parts of the house. I'm very proud of him! No complaints..except for how dirty it was lol. He did an amazing job...He's HIRED! That's all for now.

Tired and Stressed out

I've been having a rough day. I've been trying to ignore the pain but it's hard. My shower today set things off pretty bad. It felt like I was being stung by a million bees the entire time. I was freaking out! My headaches are unbearable and they have been this way all week. I have trouble remembering if I took my medicine so I'm getting frustrated. I have to set an alarm now for reminders. My memory is not what it used to be and I've been noticing that I am even reversing my words when I speak and also writing numbers and letters backwards. I also write things completely wrong at times. I get very upset with myself when this happens. The RSD involves the brain. My brain doesn't process anything correctly. My brain first of all processes everything as PAIN. The pain takes over and then nothing else works right. My memory, concentration and ability to focus on things have been greatly affected. I can't sit in one place for very long and driving is getting more difficult. I don't do well with anything that takes concentration, focusing, thinking, etc. I also am having a hard time with lights and the sun. It bothers me so bad. If you've ever had your eyes dialated at the eye doctor and walked out of a sunny day without sunglasses...well..you would know how I feel. That is how I feel every day when I walk outside. I tend to not turn on lights in the house as well because it bothers me, especially the bathroom lights. My eyes don't work right either and I have trouble focussing. It seems that my optic nerves are being affected now and if damage is done, it is not reversible. I have 3 pairs of glasses and I change them throughout the day. My vision changes by the hour. It's the craziest thing. I try to make light of it but it's not easy. I hate not being able to read anything and asking everyone for help. It's tough. I have had to learn to ask for help now for lots of things. I give my kids so much credit also..they have been WONDERFUL! They have been very understanding and helpful. They are usually around to lend a hand and they even yell at me if I don't ask for help. My husband is the same way..so helpful and supportive. I try not to complain about how I feel and how much pain I'm in. I can't hide it though and they know it. They are there for me and I don't know what I'd do without them. I've had a stressful day today and I'm now tired and going to call it a night. This is my time to go lay on the floor and meditate some and just try to think of absolutely nothing! Then I'm going to watch "So You Think You Can Dance" and pop some popcorn. I'm too tired to think at this point and I'm kind of bummed because it was a beautiful day outside for the first time in a while and I spent it in the house. I miss riding my bike and other outdoor activities..it's so hard to cope sometimes knowing I can't do these things anymore.

About Me

I thought I'd sit down and post a little bit of information about me and what I've been going through. A few years ago, I was a very active person who loved mountain biking and other activities outdoors. I started a new job with a company near home. My job consisted of mainly data entry type work. It was very repetitive work. I was in charge of entering all the UPC codes and pricing for the entire inventory. I had a terrible work station. No ergonomics at all! I had a broken chair with no arm rests, a mouse that was too short, a keyboard with no support and just a terrible setup. Over time things started to happen and I was in pain. When I started noticing the cold hand and the pain, I asked for support and even went and purchased ergonomic items but it was too late. The damage had already been done. It's basically like having carpal tunnel but in the neck. I started having pain that went from my wrist to my neck. It was so uncomfortable to sit. I was losing function in my right arm as well. I was diagnosed with Thoracic Outlet Syndrome. After the diagnosis, I went through so many courses of treatment and nothing was working. My condition kept getting worse. The pain kept getting worse and unbearable at times. It's really a very long story so I will try and make this short. Since none of the treatments worked, I had surgery in January 2008. 2 scalene muscles removed. The recovery was AWFUL! I wouldn't with this on anyone! I had such a tough time. From there, the problems continued. 5 months later I was back in the hospital having thoracic spine surgery. I had spinal cord compression in my thoracic spine and could barely walk. That surgery was a huge success and I was immediately better on that part..but the TOS was still so painful and still an issue. Things just continued to get worse and again I have tried different treatments, different medications, PT twice a week for over a year..and I knew something was terribly wrong. The pain was getting worse and it was a different pain. A burning pain! It was spreading! I had eye and vision problems, hair falling out, hair changes on my body, nail changes, mood changes, skin changes, eating issues and more. I couldn't stand being in my body! I still can't! I went to several Doctor's seeking help, trying to find what is wrong. Nobody was coming up with any real answers. I ended up going to the ER in June and was admitted for 3 days. While there, I had a GREAT team of Doctor's who actually listened and really looked at me. They knew something was wrong and wanted to find out what. I finally got an answer but it was not really the answer I wanted. I was told "you have CRPS/RSD", which is from the TOS. I really didn't know what it was at that time. I was discharged with an appt to go and see the neurologist a week later. In the meantime, my husband and I researched it. It hit me pretty hard. After reading about it, it sure explained everything that has been going on. I was so upset. I cried..alot. It has been hard to absorb. My RSD is pretty bad. It's not in the early stages. It's more advanced and not much will help. It seems it's progressing pretty fast. My vision keeps changing and the burning pain has spread to other limbs and at this point it has become full body. I met back with the Doctor's who suggested ketmaine treatments. I was stumped. We again went home and researched that treatment. It was even more to understand and absorb. I have agreed to try the treatment and I am in the process of tests for clearance. The treatments will begin in the fall. That's all for now...will update more later. I'm having lots of pain in my hand today.

Mid week and still not feeling better

Well, here it goes. I'm going to try blogging. I'm totally new at this and still in the process of setting everything up. I have had to take frequent breaks due to having so much pain and irritability today. I am learning as I go..lol. I have been having a rough week which I was somewhat prepared for after going to the Billy Joel/Elton John concert Saturday night with my son. It was a great concert but I'm paying for it dearly. Monday and Tuesday such bad days..2 of the worse I've had in a while. Today was a little better so I tried to go out for a little bit but that just made it worse. The humidity is terrible and that makes things worse. My arms are burning so bad and my right hand isn't working today. I can't pick things up and Ikeep having these awful muscle spasms. I'm cranky at the moment so I thought I'd try to post my first blog. The kids are bored and can't seem to find anything to do. School will be starting soon! I'm having another asthma attack so better go. This is the 3rd one today. It's been getting out of control. The RSD makes it worse. I can't win! More later...