SummerLaree's Journal

I have gotten farther in my goals, so that is a good thing. But I went into such a bad flare-up from my MG that I have now finished my 2nd day IV sol-u-medrol. We're trying to avoid my 4th round of IVIGs within 1 year. Mainly due to the fact that with the last round I had I had a mild stroke on the 4th day. Hopefully I will be able to rebound o.k. I am suppose to have a thymectomy within  weeks. This is a text book example why I am going to have a thymectomy. No matter how many meds I am on we cannot keep me from going into flare-up. Thank God that I have the meds. I would probably be dead without them! My neurologist is great to! Considering I keep him on his toes.

To top it off I went in to my pain management specialist today & found out that I have arthritis down my back, in my hips, shoulders, & jaw. I was hoping for something a little easier to fix that might not be so degenerative & painful with time. & now because of the transfusions & upcoming surgery Dr. Kelly wants to make me wait at least a month for a nerve block in my spine, but wants me to cut back on the pain meds right away. I'm not so sure that he has been in true agonizing pain. Even though I have ms, rheumatoid arthritis, arthritis, fibromyalgia, migraines, mg, etc... my p.c.p. & even Dr. Kelly told me that I have plenty of reasons to have all the pain meds that I have & more. I'm the one that asked for the pain management specialist, to have less pain meds. I only have 3 kinds of pain meds at this time. I refused the morphine. I fail to see what  Dr. Kelly's conniption is all about having my meds cut back now when he will not help me for at least a month & when in the middle of that month I will be on heavy meds because of my thymectomy. I even mentioned that to him. All he said that he was going to do was e-mail my p.c.p. for less meds. Like I said, That's great, when he can start to help me, but the soonest he will see me is another month & we're not sure if he can do anything that soon after having my chest cracked open. I don't want to be in pain. That is why Dr. Kelly is suppose to do the nerve block so that I won't have the pain. I hate pain. I'm scared of pain. I guess if he can't help I will be on the pain meds. Then where will I be by the time I'm 40. That scares me more.

I'm scared, confused, in pain, in a flare-up, & tired of all of it. Tired of waiting for the  Dr's to make up their minds, when their not the ones that have ever had to suffer a day in their lives with a true agonizing disease. Tired of having to play their waiting game, or the waiting game of the stupid insurance because, they might have to put out an extra dollar or two. The insurance is the one that tried to force me on the morphine to save some extra bucks. Who cares if I am allergic to it, or in other peoples cases, become addicted to it, & then have to worry about all of the other drugs for withdrawal, or even a hospital stay. 

I have to stop my whining. God, I know that it is all in your hands. It's in your control. I'm sorry that I have allowed my eyes to be taken off of you. I'm sorry that I forgot that for a moment we puny people were in control. Please, don't let those Dr's let me suffer. My new p.c.p. has been so wonderful about taking care of me & if he has any questions me never hesitates to call. Don't let Dr. Kelly let me suffer, or to turn Dr. Collin's mind against me. Please let this thymectomy go through very quickly! 

 Bless the people on my friends list. Take care of them & their needs! You know all of their needs, not just the ones that are listed on the pages for help. Touch their hearts so that they know your peace is with them, cover them with your love, & give them the understanding that they need to be able to reach out to others. Let them know that you are in control, & that there is a meaning for everything. Even when life seems unfair and not worth it. You Promise To Work It Out For The BEST. & You NEVER Go Back On Your Promises! Lay that on their hearts & minds in such a way that they know it's from your heart to theirs.

Again I'm sorry for the whining, we are your children. And I just needed to be able to get it out. I love you for all that you are, for all that you have done, & for all that you will continue to do. Thank you. Please let Dr. Collins see how great he is. Let Dr. Kelly see how he can hurt me & actually put me into a flare-up caused by uncontrolled stress & pain. Even if that means that he goes through a dose of severe uncontrolled pain that he might have to wait for other Dr's or insurance waiting periods. & finally "light a fire" under the butts of the ladies that were suppose to have my surgery scheduled by last Friday 1/25. I guess that they did not realize that the surgery was suppose to be done as quickly as we could get it scheduled due to the nature of my flare-ups. Now that they have been filled in I was told that they will hurry. Please Lord, make the doors open up, as only you can, make them hurry, & have this done in the blink of an eye (my eye).