Well, Hurricane Sandy hit my family more than I was anticipating. During Monday night, October 29, 2012, everything was going fine. I foolishly thought to myself that this was overblown out of proportion as usual. Until I heard a snap. Then a loud second snap. A huge tree fell down across our yard stopped only by our patio roof. It took out our electric line. After fighting the cold and the darkness in the house until about Wednesday, the kids and I decided to take refuge in my parents house until our electric came back on.
During that time I had another MS flare up. This is the fifth one this year. Again, I was started on the steroids just when I was feeling back to normal and beginning a healthy lifestyle. I was in tears. I couldn't believe how much bad luck I was having. Between the power going out and another flare up it was too much to take in. I honestly don't know how much more I can handle. I am strong but even for me it gets to be overwhelming. I have one more day of the steroid IV's then onto the pill. I am going to wean off faster than usual with the pill because I just can't take these steroids anymore. I am grateful they help but I need to find other ways. Going to try to eat healthier, talk to my MS doc about some herbal supplements, and begin my exercise again. Also, I see him in two weeks so I am sure I am going to be switching meds again. I apologize for the lapse of time in communication fellow readers. With all that was going on, I hope you understand. Now it's time to bolt down for the Nor'Easter that is hitting us today. Sometimes I think to myself that this really might be the end of the world. Ha Ha
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Answer this question! How many doctors do you know that actually call YOU because he is worried about you and wants to take a more proactive approach? In my experience my answer would be ZERO. Except for the one doctor I have now who is my MS Specialist. He actually called me to come in because he was concerned with my numerous flare ups this year and doesn't want to wait around to just see what happens. He wants a more proactive approach and desires me to be flare free for years at a time. I have to admit though when he did call me I became extremely nervous. Doctors only call when something is wrong. I know having this many flare ups is not good but still having him call me made me think it was going to be drastically serious. But I am grateful for finding this wonderful doctor who has dedicated his whole life just to treating people with MS and his MS research institute. I am grateful he is so caring and proactive because that is so rare in today's world.
I have to get another MRI to see where I stand. Also, some blood work to test for this certain virus in case he wants to switch my meds. He is thinking about switching my daily shots to this once a month infusion medication. I admit not having to take daily shots would be a blessing but the possible side effects of this infusion is down right scary. I don't know if I want to do it because of that. He told me not to get ahead of ourselves yet. That we will see once the MRI comes back. So naturally I am worried about that. I don't like taking daily shots but it's alot better than risking those potential side effects. So now I am hoping the MRI shows some improvement. I trust him. He is one of the leading doctors in the MS field. It's just all scary and overwhelming. Thankfully I am beginning to feel better once again since the recent flare up. Slowly getting back to my normal self. Just got to hope for the best now. I would love to hear any feedback on any doctors you may have that are actually caring such as mine. Like I said it's a rare find now-a-days. So here I am getting over yet another flare up this year. I believe this makes four thus far. It's quite discouraging and depressing to say the least. I know everyone keeps telling me to hang in there but quite honestly I am so sick of hanging in there. I hear of people that go years without a flare up and I have had so many in this year alone. Thankfully, the damage hasn't taken my only good eye left and I am still functioning normally. But in that same respect also, I am tired of being thankful for things when so much has been taken from me. MS has taken my sight in my right eye, has caused pain in my legs, repeated attacks of vomitting, and I can never be sure if I will be able to hold a steady job again. It's taken my sense of security, my hopes of the future, and my general sense of well being. It has mostly taken away my sense of normalcy. Everytime I hope this is the last flare up I have to deal with for a while along comes another.
It's so hard sometimes to get myself out of this way of thinking when everything just seems so bleak all the time. I do my best with it though for my kids and husband. I'm just so tired of fighting. I completely understand now that when people are so ill they just give up. It's not because they are weak or depressed really, it's just the constant fighting wears you down. There is really only so much one person can take. I don't understand why I had to get MS. Why me? Why not some horrible person who does horrible things? Why do good people get dealt such crappy hands? I know I am whining a lot. I guess I just need to vent. And I suppose whining about it isn't going to help or make it better. At this point I don't know what will make it better. Just trying my best and doing the best with what I have. That's all I really can do...that's all really anyone can do. I was just wondering to myself the other day how differently people deal with life's challenges. There are so many challenges that can affect a person. This could be financially, emotionally, health complications, trouble in the work force or in a personal relationship, and the list could go on. This brought some of the focus on myself and how I deal when life throws you a curve ball. I like to meet challenges head on. I am not a procrastinator. I address the issue and try to resolve it so it can be done and over with. But as you all may well know, not all problems can be resolved so quickly. In fact, many challenges linger for years without a resolution. My main issue is having MS. This isn't a problem I can solve. I take the meds and follow the doctor's advice but sadly MS has no cure. Unfortunately, this will be a challenge for the rest of my life. So this seriously conflicts with my mentality. It's a constant day in and day out battle. There are good days and there are bad days. All I want is for there to be just MS free days. I am still trying to grasp this grim reality. Most of the time distration works well for me. Thankfully, having kids provides a great deal of distraction. But there are days I dwell on my MS. There are days when I am angry, fearful, and just down right sad about it. I try not to dwell on it. I can only do what I can do and the rest I really have no control over. Just that fact alone scares me. Just seeing it here in black and white gives me knots in my stomach. I try to focus on the positive as much as I can. I try to enjoy the little pleasures in life and savor them. I try to remain hopeful.
I often see how others deal with their complications. Some just sink into a deep, dark hole of depression. Others ignore it altogether. A few act out negatively without even acknowledging the underlying cause. A handful create different problems to avoid the real one. Then there are a small number who change their negative into a positive. It's interesting to find out also what different people think are real challenges. I listen to a few of them complain about the most trivial things. They make a mountain out of an ant hill. And I wonder why? Is it because we, as human beings, almost need a problem in our lives? If everything is going well, does it scare us? Or does it just bore us? Maybe it's possible that it gives us a purpose. These are questions I can't answer. Maybe you can enlighten me?! How do you deal with problems in your life? What do you do to try to make the situation better? I was a bit nervous the night before my MS specialist appointment. I had quite a bit of flare-ups this year and I knew the MRI was going to show anything good. I actually did manage to get some sleep as long as I kept it all out of my thoughts. The next morning I had to pick up a copy of the MRI disc and report for my records. I decided to bit the bullet, which is just how my personality has always been, and look at the reports. By now I have become a bit of a pro at reading MRI reports. A lot of the words are technological so I have basically learned to scan through it and pick up on the words leading to the result. It was a good and not so good report. The lesions on my spine are actually resolving. That is the good part. The not so good part is that now I have some swelling on my left optic nerve. Excuse my bluntness, but this scares the crap out of me. I have already lost sight in my right eye due to optic neuritis so now the fear of losing my left is overwhelming me.
At the visit the physical part of the exam went great. Then he loaded the disc to look at my MRI. He never goes by the report. He likes to see it all for himself. And he has me sit next to him so he can explain to me everything he is seeing. He really is an awesome doctor. He found a small lesion on my brain that is unfortunately in the area that causes vomitting. Well that explains that horrible flare-up. He did show me the swelling on my left optic nerve. I asked him "Am I going to go blind?" He responeded with "That is what we are going to try to prevent in every way that we can." He also looked at my spine images and was happy with the results. The injections I am on seem to be working. And I have only been on them two months. As it goes into it's third months and so on the shots will be at its full effect but already are clearing up my spine. He informed me that hopefully it will start working with my eye. But if there is any changes in sight I need to contact him quickly. I wasn't suppose to go back for another six months but because of the eye he wants another MRI in November along with another visit. He wants to keep a close eye on it, no pun intended, and to compare the MRI's so see how the injections are helping. So overall it was a good and not so good visit. My sister told me to take it as a positive. She said it looks like the shots are helping and that's a good thing. It takes longer to get to the brain because of the blood brain barrier. She also said with the burning leg pain that might heal also but it will takes some time. So maybe it is a positive visit. I sure hope so. Everytime I dwell on losing my left eye I start with the panic attacks so I try not to think about it much. All I can do is hope and pray at this point. Also I can be as positive as I can and keep myself stress free. Positivity and less stress does have a great impact on the body and mind. |
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