I am tired, scared, happy, sad, mad, guilty, foolish. There are feelings of inadequacy. Humility is a good word...I could go on and on. I think so many emotions have touched me over the past couple of months. I am tired because I have tried to help and fix my son for years. Yes I know I can't fix everything but I'm mom and I guess that is a good enough reason to make me feel guilty...because I can't fix my sons health...but I'm sure as hell going to try. It's what you do. If it doesn't get fixed or you are trying to help and nothing's working and to see your child hurt is very difficult. Then the sadness creeps in because I have gone to great extremes and have been to many places to help my son and the sadness is seeing that all my efforts have not helped. Anger sets in because I have been to so many places and seen so many different doctors that one would say I have too many cooks in the kitchen...but none of the doctors ever said the same thing which just confused me and I needed to search for my answers myself....and this is where I feel foolish. Foolish to think that I was going down the right path...I felt like I could breathe because I thought I knew what was wrong and had it all mapped out...if Remicade doesn't work I had Humira, if UC flares we would know the drill on taking Bruce to ER and immediately starting IV prednisone and would wait and pray that he wouldn't have to take his colon out. I got comfortable that I had a game plan. I was just getting to feel at ease with Bruce's illness. Enough for me to stop researching nightly. When I say at ease I don't mean I stopped worrying but to me once you have a label you can say ok...we know what it is and now we will do our best to combat this illness and help Bruce get through the rough parts and rejoice in the other parts of life. I was scared that Bruce had one more medication left to try, scared of the MTX causing such brain fog and confusion for him. Scared for his future.
I have to say that my worst fear was the fact that we had a surgery date set last year of Bruce needing a colostomy. I did what I had to in preparing my child for this procedure. We accepted it. When things changed and Bruce started to get better we were so confused because of what we were told. He will need his colon out later due to a grand possibility of having colon cancer before the age of 20? Also, he would have a very good chance of not having arthritis anymore. Yes it's good to know he didn't need a very large organ removed but we were scared that he would flare like this often because we were having a hard time keeping it under control. Now I have no idea what he has. So my hope is that we were just looking down the wrong road yet now looking into another scary disease...mitochondrial. This disease can mimic other diseases and can be very confusing. It can also be progressive.
I guess I needed to get so angry and feel that we were getting nowhere. It's very hard to see your child in a wheelchair who can barely get up and have a doctor tell you I'm sorry but I don't know what to do for your child. I don't know what's wrong. I'm not mad at the doctors just frustrated. We were looking at one disease only to find out its probably not the right illness. It would explain a lot!
I feel out of place...I don't know why. I don't know what to say to people who know Bruce had JA and UC. Yes he's feeling better. I feel the need to explain. Oh that's good, they say...but they don't know JA much less mitochondrial disease. At this time Bruce is being checked out next week by a cardiologist. He will have an echo and a ECG done. Mito disease can affect the heart. He will also have a sleep study done. He has a hard time going to bed and staying asleep because his legs want to move. So restless leg syndrome is something that we have to look into because it can show up in mitochondrial disease. He has had this maybe once a month every so often. Now it's every night for the past 2 weeks. Tonight he just told me that he's been waking up very cold at night...I'm not sure what this means. I asked Bruce to wake me up so I can check his temperature when this happens. I will have to call the neurologist. I have a new set of worries. He still is stiff and fatigued but not as much. Legs are tired but we see an improvement. Colon still not doing its job and now a couple of things that have come up in the past couple of weeks to check out. What worries me is the fact that this disease can be progressive. It all depends if you have a mild case or more complex.
As we have progressed through the last couple of years...I find it very hard to take Bruce to a doctor or procedure that will hurt him. I do not want him to hurt. I freak! Not in front of him, again in the shower or behind closed doors...see a couple of weeks ago Bruce got a Chalazion in his lower left eye lid. It was right where he had a procedure that was needed to create a tear duct that was missing. It was large. About the size of a pea, which doesn't sound like much but it was causing his lid to slightly droop forward. So we took him that day to his eye doctor. Eye doctor says hot compresses and some steroid cream and it should be better in a few weeks. By nighttime it looked bigger. Which didn't seem right because the heat is supposed to shrink the lump. It didn't and the next day it was a lot bigger than a pea and let's add a red line coming down his face. I told my husband that we have to go back to drs, Bruce couldn't even touch the lump. I was sick and couldn't go so Bruce took him and me knowing what they would do. It would be lancing, or a cortisone shot...neither is a comforting thought. Sure enough it needed to be lanced and Bruce did so well that the doctor was amazed. oh Bruce bared down and it hurt...bad...but he got through it. Didn't squirm, scream, nothing. Just a growl! Me...not so much. Bruce had an infection and it needed to be drained. I was at home when my husband called and told me...I just cried. Cried because he had to and has had to endure so much. This is how I feel thinking about another muscle biopsy and a lumbar puncture that he will go through. It's made Bruce stronger but mom weaker.
I'm not falling apart. Just venting....and I do vent. I am thankful for an understanding husband and a great psychologist. I am thankful that we are going down a different road and that things are looking better for Bruce. I just feel like I'm back to ground zero. I honestly wonder what the last 4 years were for my son. I sometimes wish I could look into a crystal ball and know the reasons why things are the way they are. Im a firm believer in lessons. Lessons are what God gives you to make you wise. So that you may pass down your wisdom to your children or anyone that is in need of it. I believe that my lesson is to help Bruce get through the last 3 years and the future. Bruce's lesson is to get through it and come out a better person because of it so that he may help others who need it. Courage and understanding is what I see in my son. And love...I see love.