This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
 
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Going in Circles!

What a busy day it turned out to be. I felt like I was constantly going in circles. The day started with my dad's appointment. He had a procedure at 7 this morning and needed me to drive him home after, seeing how he was put under sedation. After taking him home, I had to turn around and go back to almost the exact same area for my doctors appointment at 11. After my appointment, I had just enough time to come home, have a bite for lunch, and pick Nate up from school. Next, we were off to his appointment, yep, also in the same area. What the heck? I seemed to be running in circles all day.

Anyway, my appointment went okay. About two weeks ago I went to Seattle to see my GI doctor for follow-up. I had just done an endoscopy & colonsocopy the previous month and he wanted me to come in to go over the results and do some bloodwork. It seems I have this very frustrating thing that happens quite often, my test results are abnormal enough to show there is something going on with me, only normal enough not to give the doctor's an exact answer to what is going on. Talk about frustrating! Although, I have MS, I should be used to that right? I don't think you ever get used to that, it's a pain no matter how you look at it.

First order of business, labs. He ordered 11 tests. They were looking mainly at my liver function, immune system, and electrolytes. There were some specialized tests done too. Those took forever to get results (Dr. Shaw just called me with the results the night before last). This is where my appointment today came in. Good news is that my liver is on the mend. It has taken a long time, but finally it seems to have repaired itself, or at least it is getting there! My electrolytes, which last month were all low, are now back to normal (thanks to the use of supplements)......whatever works!

The test he was especially interested in was the Alkaline Phosphotate Isoenzyme (ALP ISO) test. My ALP has been elevated for quite a while now. The ALP is, as he explained it "like a battery indicator light in your car", it is a clue that something is not functioning correctly with our system. So, this is why he did this more specialized test. This test breaks down the total ALP ISO into three areas: Liver, Bone, and Intestinal. The area we were of course most concerned with, and the ONLY area we considered to be a concern, was the liver. The good news: the Liver ISO came back normal. The bad news: the Bone ISO came back abnormal. The not-so-great news: the Intsestinal ISO also was abnormal. This is not as significant as the bone, however, or as big of a shock, considering GI problems are in my family history (my grandfather died of colon cancer, and I have GERD, which could be what elevated this enzyme). My GI doctor says it is not something to worry about, so I'm not. It can be easily monitored.

The bone, now that is a whole other story. None of us thought for a second that would be a problem. Typically the only people you see with abnormal levels are those who are over/under a certain age (I think it is like above 50, under 13...something like that), and someone who has a bone disease. They have scheduled me for a wholebody nuclear med bone scan to be done first thing Monday morning. I have to go in and get some kind of injection and then the scan is done several hours later. Apparently the radioactive injection has to go through the bloodstream and into the bone/bone marrow. This way they can see what is going on when they do the scan.

There are so many things that could be going on, and.......it could be nothing, although with my luck, and health history.....unlikely. It could be something like osteoporosis, degenerative bone disease, a bone marrow problem, who knows? I have already had cancer 3 times (skin @ 11, ovarian @ 24, lymphoma @ 28), and now the MS (dx @ 27). How much more can I take? There are so many things that it can be, so I have decided it is best not to speculate. I have to stay positive and hope for the best. I hope I will know something on Monday however, because I find the worse part is the waiting. It will all depend which doctor does my scan. The last scan I had (last month, SBFT) was great, the radiologist read it and gave me the results before I left. You gotta love that!


On a much more positive note, this seems to have given me the much needed kick in the butt to do something about how I have been feeling lately. When I was at my doctors, I told him I was sick and tired of how everyone told me this is how I HAD to live my life with this illness, and I just don't see it that way. I understand that changes have to be made, you must slow down. I now know I am unable to do things the way I used to, but that doesn't mean I CAN'T do them at all. I am so sick and tired of everyone else telling me what is best for me. What about what I want for my life? I know they all just have my best interests in mind, but I had a really good life, I was happy. I can't say that now. It is not that I am unhappy all of the time, mostly, I am a happy person. I just think my 'quality' of life has suffered due to my inability to do things like I want.

This is where I have to take control. I had a long talk with my doctor, and unfortunately, I can't come off any of my meds right now :( I am on like 20 things a day, that gets so old! but he says that they are ALL needed and my health would suffer drastically if I did not take them. I told him I was sick of being stuck in my house. I asked for some recommendations on what I can do to regain some of my health. I told him I need to do everything possible to get my health to the best it can be, because I just can't sit around. I have worked too long and hard to let my life just waste away, this illness cannot beat me. Although I am far from actually sitting around, wasting away, he agreed, it would do me some good to get out more, maybe one day return to work? That would be nice!! He is very familiar with my background as we have had conversations about my previous time working in medicine. Sometimes I get frustrated because I am being told I can't work due to my health, but I feel like I should be able to. That is the thing, isn't it? It is difficult when your mind is still active, but your body continues to fail you.

He was very responsive though and told me if I wanted to do something, swim. Join a health club and swim as much as I can. He said that he has seen patients respond wonderfully to swimming. He advised me not to over do it, not to go to a point that I would be in pain, but to swim as much as possible. He has seen MS patients who have had great success with this. I have heard of water aerobics being recommended, but I was surprised to hear him say get out there and just swim laps! I love to swim so for me, this is GREAT! I'm gonna jump all over that.

I am hoping that I can find a health club that is reasonably priced, so I can start swimming! If nothing else, it will get me out of the house more and exercise is something that is always supposed to help, not just with MS, but depression, fatigue, all kinds of health problems. I bet it will help with my asthma too. When I got home I started making calls. I still have a few places to call and then I think I will have to figure out how I can work it into my budget. I found one place, that would have been perfect, great programs. They are really expensive. I am sure I will find something soon. My goal is to find something so when I return from my appointments in Seattle at the end of the month, I can jump in the pool (ok, not literally) and get swimming!

Well, I hope you are all well. Please take care of yourselves.

4 comments:

personallog! said...

I not to sure what to say to make you feel any better...to be honest it doesnt sound like you need or want my help anyway! Just know that I am here for you 'IF' you want it! I will keep reading and passing my love through cyber space...Please do stay in touch... You have been a life line for me and I owe you one. We will get through this together, honest.

Loving hugs
Dave

Jaime said...

Oh Dave.....I can ALWAYS use support, and although I try really hard not to need anyone (control freak that I can be,haha). I think at times we all need people in our lives. I have been very blessed to have met you, and have you in my life. I always want to hear what you have to say. Any help you can give would be most appreciated. I know you will be there, as I will continue to be here for you. Life is not easy! I know that as well as anyone else, but somehow I always seem to pull through. You are right, we will get through this, and going through it together....knowing there is this whole group of people out there, is such a help. Thanks for everything! x Jaime

camille said...

Jaime,
good luck on the test next week. i hope you are ok. if you need anything again need to talk i am here.we are here to help each other
(((camille)))

mdmhvonpa said...

Swimming ... not that is a move in a positive direction ... keep your mind occupied.


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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