Two steps forward, one step back

It seems once I get hopeful that things are turning around, something bad happens. Yesterday I went back to the pain management doctor. We discussed my options to help ease the pain, we ended up just upping my dose of one of my medicines and planned for the other one to stay the same. Well, today and last night after taking the pain medicine, I itched EVERYWHERE! I felt as though I just wanted to pull my skin off to scratch everything. This has happened before, but I just assumed it was related to the MS. Now, it's looking more like I may be allergic to the medicine. 

When giving the diagnosis of multiple sclerosis, I was a little optimistic because it meant I'd get answers, treatments, and start feeling better. Well, I was WRONG on so many levels. Instead of bringing answers to me, it brought more questions. Numbness can be defined as abnormal sensation, therefore itching may be a symptom OR a side effect. As far as treatments, it is mainly used to treat symptoms which can be incredibly hard. I feel like I am ALWAYS taking medicine for this or that.

Better news, today Bridget and I went to our first meeting to help with the MS Walk 2012. This year the New Orleans walk will be held on March 24. So far we have come up with several ideas and ways to make the walk more enjoyable for everyone! We are looking into having games and competitions. Of course, if you want to win ya'll join our team, Tutu Cute!!! We will definitely win several awards. The website should be up later this week or next week so we can start registering. 

Today has been a super long day and exhausting day. I am still not sleeping well at night, and horrible nights usually lead to even worse days! I fight all day to stay awake and still don't sleep at night. Anyway, today I went to Baton Rouge to have lunch/shop with my friend. Then, I came back to NOLA took a rest and finally went to the MS walk meeting. To many people my exhausting day is a walk in the park. But, for me it takes more energy and when I don't sleep good all of this just intensifies. Now I am at least able/willing to leave the house. There was a time earlier this year when it took all my energy to get out of bed and get out the house. 

I wish people around me could understand what a typical/normal day is for me. I never would wish this disease on anyone! But, I feel like people who are uneducated are less likely to understand or even try to understand. When I wake up, I never know what the day will bring. When my hand, foot, arm, or leg is numb I never know if it's temporary or if it will stay for a week or more. While I always keep it in the back of my mind, I can't let myself become absorbed in the MS possibilities. On a daily basis I struggle with memory problems, shaky hands (which can make the easiest task much more complicated), balance problems, and muscle spasms. 

Tomorrow will be another fairly busy day, well a busy day for me. I finally signed up to be a substitute. I have to go meet with the man from human resources. I am glad I have put my name in, but I'm definitely scared about subbing.  The main benefit is that I can pick and choose what days I want to work. I'll be able to slowly work my way up and continue to get more subbing jobs. My main fear right now with getting a job is that I was miserable for so long with back pain and this summer it's FINALLY gotten better, the light at the end of the tunnel is becoming more obtainable. I worry that once I get back into a job and working 5 days a week teaching and spending majority of the day on my feet. 

Prior to being diagnosed with MS I was a practicing Catholic, but didn't fully accept everything into my life. Immediately after being diagnosed I felt betrayed by God and lost some of my faith. In the past few months, I realized that God didn't cause me to get multiple sclerosis, but he's there to help me. I have had days where everything was going on and I was ready to give up. Whenever I feel like I can't fight anymore God gives me more strength and courage to continue. I now know that God is here helping me and not trying to cause pain/suffering. Now that I have found God I feel more at peace and I now that when I am ready to give up and have lost all hope, God is there to give me the strength to continue. 

Help find a cure before MS gets on my LAST nerve!

In October of 2007 I ended up in the emergency room with the right half of my body completely numb. I was told by my general doctor to go to the hospital since it had been numb for over 36 hours. Completely terrified, my aunt came and picked me up to bring me and my mom raced to meet us there. Three/four hours later I was told I had carpel tunnel, given pain medicine, and an arm brace to wear. I was told to go to an orthopedic as soon as I could to get checked up. At that appointment I was told it wasn't carpel tunnel and I had a pinched nerve somewhere, well more than one since it was the entire right side!


The numbness went away within the week, so it became a distant memory of the time I waited in the emergency room petrified! While I didn't experience numbness after that, the next couple of years were fairly rough. I had a major surgery that I had my doubts if I'd ever heal from, and gradually this upper back pain starting taking over my life. Of course everyone has some type of back pain at some point in their lives, I carry around lots of heavy books. At first it was just a nagging pain that would come and go so I didn't worry about it too much. Over time the pain continually got worse until I was at my witts end and could no longer handle or manage it with over the counter pain medicines.


I had already been to an orthopedic about my back pains, so my general doctor told me that a rheumatologist would be the next route to take. At the beginning of 2010 I finally made an appointment to see one, optimistic that this was an easily fixed problem. After extensive blood work and physical exam, I was diagnosed with fibromyalgia. I was given three different medicines: a muscle relaxer, ibuprofen, and something to help me sleep. The muscle relaxers definitely helped, but it made me sleepy all the time so I was unable to take it as needed. We went back to see him and discuss other treatment options. The second round of medicines, similar to the first but different drugs in the same class. Those didn't help either since and my stomach was on so much medicine I was always sick. At this point six months had passed and I was no closer to any relief. The last medicine he tried me on was a pain patch, but since the pain was so deep that didn't help at all!


At the time, I felt that I would never get relief or find a doctor that would help me. Looking back, I know my guardian angels were looking out for me and were guiding me to see another doctor. I went to a pain management doctor, who reviewed the blood results and ordered an MRI. I have hypersensitive reflexes and other problems that are common among people who've had trauma or spinal injuries. I didn't really fit that description, but it had to be done. 


I knew as soon as the MRI was done that something wasn't right. The man who went in prior to me kept asking the nurse when/how he'd get the results of the test. But, once I was finished the nurse asked me several times, like 3-4, when I was going back to the doctor and then told me to make sure I called his office in about a week. I just had this gut feeling that something wasn't right. Luckily, it was right before fourth of July and my sister, some of her friends and I went to the beach. 


A week after the MRI my mom called the doctor for me. My sister and I were on our way home from Florida and I kept texting my mom asking if she'd heard anything. When we were about an 1/1 hr and a half from getting home I called her. She answered and finally admitted the doctor had called back and we'd talk about it when I got home. That was the LONGEST hour of my life, because I knew if it was normal she would have told me that. 


I spent the rest of the ride wondering what they found on the MRI. As soon as I saw my mom she told me that the MRI suggested that I had multiple sclerosis. At the time, I knew very little about MS, but I know people who've been effected by the disease. I pretty much lost it, it was not the diagnosis I was prepared for and I just kept seeing pictures of some people with MS and how debilitating it can be. 


I will say that the doctors moved super fast to confirm/start treatment. A neurologist was able to fit me in the next day when we scheduled a spinal tap to confirm the disease. Once those results came in I got calls from everywhere! The month went by so fast and I felt like I was drowning, but once I did some research and the doctor started the process of getting my shots (they are ordered from a special pharmacy) I slowly began to feel like I could get my life back to semi normal. Multiple sclerosis is a very frightening disease with so many unknowns, but I always have several nurses, pharmacist, and other people specialized in MS are just a phone call away. 


I feel as though once I was diagnosed I entered a whole new world, one that I never knew existed. So many people reached out to help me and convinced me that I am strong enough to fight.