Mayo update

Alright, so I have a lot of people asking for updates on my trip to Mayo… I am sore and not really up for writing about it yet, but I know people are curious, so I figure I’ll start working on the update… hopefully it won’t take too long.

We left Sunday around two in the afternoon. We took Highway 14, which didn’t turn out so well. The roads were so incredibly bumpy and every bump or vibration hurt my feet. I had a rough ride there! I can’t remember what time we made it there, but it was dark outside.

We ended up staying with Chris and Lisa, who are good friends of my brother! They were so sweet and accommodating and helpful! Plus, we didn’t have to pay to stay in a hotel--what a huge blessing! (Thank you to Ross, Chris, and Lisa!) =)

So we got there Sunday evening and got a good night’s sleep before my appointment on Monday. The neurologist that I saw was a very nice woman… I was glad that she was so incredibly nice and understanding. Unfortunately, she said that she believed it was a neuropathy problem, but needed several tests done to be sure.

Tuesday was the worst day of the week… I had several tests (one right after the other) and a lot of them were very painful.

I started out the morning by getting blood drawn. I’m used to lab work, and didn’t think it would be a big deal. Well, she ended up taking 18 tubes of blood!!! They were checking for MANY different things… holy cow! I was glad to be in a wheelchair, because I’m not sure I could have stood up and walked away after all of that.

My next test was a sensory test. It started with the woman asking me to close my eyes. She said the numbers 1 and 2, and I was supposed to tell her when I felt something touching my toe--on 1 or 2. Unfortunately, several of my answers were “I didn’t feel anything at all” because of the numbness--my results were not very good from that test. The sensory test also included tests to see if I felt cold and hot--and I failed those miserably as well.

The next two tests were EMG tests. First, I had a nerve conduction study done. I had one of these done in Sioux Falls earlier this year, and it was SO INCREDIBLY PAINFUL! I was absolutely dreading it. The two women who were doing the test, Linda and Emily, were SO sweet and understanding. They talked me through it, and only had to do one foot instead of two! For those of you who don’t know, it involves a series of electrical shocks on your nerves to see the responses. Basically it’s an hour (or so) of shock after shock on painful areas. It was painful, but I was able to make it through without crying. Then they left and a male doctor came in. He was going to do the next test, which involved sticking needles into my muscles and then having me contract my muscles. The computer let out a weird static like sound--so he was listening to my muscles. Weird. That was painful, especially the needle he put in the bottom of my foot--ouch! I made it through, though.

After that, I had a bit of a break where my mom and I were able to go get some lunch in the cafeteria.

That afternoon, the first test was to take fat tissue from my stomach (2 samples) to look for a specific type of protein (or something) that causes neuropathy. That was quite painful, but he did numb me first, so that was nice. It only took about 5 minutes for that.

I ended the day with x-rays of every inch of my body. Was a bit painful to be ‘shaped’ into specific positions, especially when the lady grabbed my feet after she forgot that they were so sensitive. After the x-rays, though, I was able to leave Mayo for the day. It was the longest day and the most painful, and I was really looking forward to a nap!

Wednesday I only had one test, so I figured it would be an easy day. Ugh! I had what is called a sweat test. They make you take all your clothes off and just cover what is necessary with towels--looks like a mini-bikini. Then you lay on a table and are covered with this gold powder. Then, I was wheeled into this box that is full of heaters and cameras. It gets extremely hot in there. The object of the test is to see where a person sweats and where they don’t. The powder turns purple when a person sweats. People are required to stay in there for about an hour, unless they turn all purple sooner (or their body temperature gets too hot and they need to be removed). It was quite strange to see my shoulder turn purple. I had no idea that all those places could sweat! I turned purple all over in about 15 minutes… except 1/3rd of each foot was still gold. That meant I had to stay in there. I was in there for about 35 minutes total. The woman asked me how I was doing, and I hesitated to try to find an answer. The heat was really irritating my feet and causing pain. She let me quit early. She said that because my feet didn’t turn purple, there was probably some bad nerve damage. That makes sense, because I haven’t been able to feel the heating pad lately when I wrap it around my feet. I decided that I am going to keep the heat and ice off of my feet for now--if I can’t feel it, I could end up doing more damage without knowing it. My whole body was purple and sweaty--gross! She led me to this little room with a shower in it. The purple stuff did not come off very easily--some spots on my arms are still pink from the dye. She said not to scrub it off, but just rinse it. I still have purple on my toes (from the shower--my toes never turned purple, but as the purple ran down my body, it stained my toes). There’s no way I can touch them and scrub them, so I guess they will stay purple until it eventually wears off. This test was not very painful, but was quite disgusting. I hope I never have to do it again!

Thursday I had one test and then in the afternoon, got to go back to the neurologist for results. The test I had was not painful, but was boring. It was an autonomic test--testing to see if I had any nerve damage that affected breathing and things like that. It involved some more electrical shocks--but not nearly as painful as the EMG. There were some deep breathing exercises, and then a tilt test where they tilted the table I was on to 70 degrees, so I was almost standing straight up (I was strapped in, but it was painful for my feet. I walk on my heels because my toes are so painful, so to put pressure on them was not fun. Especially for 10 minutes straight!).

Thursday at 2:15 I saw the neurologist. She went over the results with me. Basically, here is what she said. I was lacking in certain vitamins for a long time after my surgery in August, and that is what caused this pain. She said that it could have been from not taking enough vitamins, or from not getting enough of certain vitamins in my diet. I want to just blame myself and get upset, but I am trying to remember this: I have been on Vitamin D since January, and my level actually has gone down. My body doesn’t absorb things as well after surgery--so even if I had perfect nutrition and took a ton of vitamins, I think this still could have happened.

I have peripheral neuropathy. This is Mayo’s information about it, if you’d like to know more: http://www.mayoclinic.com/health/peripheral-neuropathy/ds00131

I need to continue to take all these vitamins that my surgeon has asked me to take, as well as make sure I am getting nutrients in the food that I am eating. Unfortunately, there isn’t really anything that can be done to make it better other than that and time. However, the doctor said that we can treat the pain. She gave me two things. The first is a gel to put on my feet that is supposed to help with the pain. I can put it on twice a day. So far, I’ve used it twice. It does seem to numb/dull the pain for awhile, but it is painful to put it on--I have to touch the most sensitive areas of my feet and rub it in. I’m thankful for the relief it gives, but wish it was easier to apply. She also gave me a new prescription for the gabapentin that I am on. Some doctor gave me a prescription for 300mg once a day (at bedtime). She said that that is a wimpy dose and isn’t surprised that it hasn’t helped. She said that she’s given up to 3600mg a day. She gave me instructions for increasing my dose. Right now I’m taking it twice a day for 5 days--then I’ll move to 3 times a day. The prescription she gave allows me to go up to 2700mg a day, though it will be awhile until I reach that. So we’ll see if the increase helps. The goal is to find relief in these two things, so that I can reduce the amount of Tylenol with codeine I am taking. Right now I’m taking it every 4 hours, because it’s the only thing that gives me any relief.

As far as long term, things are up in the air. I clearly have nerve damage in my feet. She said that sometimes the nerves are able to grow back and operate properly, and sometimes they aren’t. It is possible that I may have numbness in my feet for the rest of my life, though I hope and pray that that isn’t the case. Hopefully it’s not permanent--but I won’t really know for some time.

Overall it was an exhausting week. I’m thankful for answers, though I wish it was possible to reverse this and ease the pain quicker. It sounds like I will still have the pain for awhile, as I work my way up in my medicine. I’m hoping that I am able to ease the pain fairly quickly--we’ll see.

Some other highlights of the week include:

*2% chocolate milk at Applebees
*Bernard the teddy bear
*The comfort of my favorite quilt on a bad pain night
*Having my mom right by my side through it all--good or bad, any time of the day or night
*Finally getting an official diagnosis and a plan of action to make things better
*Knowing that school is over, Mayo is over, and now I don’t have anything to do but just relax and take care of myself for awhile
*The distraction of the computer and word search books that helped pass the time
*Knowing that a LOT of people are anxious to read this update…. Thankful for all those who care and want to know what we found out
*Getting a shower chair to make my life (at least part of my life) a LOT easier and less painful
*Coming home to Gavin, Bailey, and Kado!!!!!! <3

Graduation and Mayo!

It's been awhile since I have updated. Things have been crazy in my life!

I am now finished with my student teaching semester. The pain in my feet got so bad that I had to quit two weeks early. The good news is that I had taught enough that I am still able to graduate and don't have to make those two weeks up.

The burning pain and shooting pains have gotten so incredibly bad. It used to come in spurts, but now I have extreme pain all day every day... I get absolutely no relief from all the pain medicine I am on. It's frustrating.

I saw my surgeon on Wednesday. A few of my vitamin levels are very very low which can cause neuropathy, which has a lot of the same symptoms that I do. I am probably dealing with that. The surgeon and nurse were very impressed with how much weight I have lost, especially since I haven't seen them in many months and have not been able to exercise because of this pain. I've lost 152 lbs. I can't wait until I am feeling better and can exercise and lose weight a bit faster. My surgeon put me on a ton of vitamins, so I am being faithful and getting them all in my system, even though I hate taking pills. I don't know how much it'll help. I've been taking vitamin D since December and my level hasn't gone up AT ALL!!! So I'm a bit discouraged and feeling like all these pills are useless... but I will take them anyway.

I am currently working on backing up my school computer as I turn it in today! I have to go to Madison to turn in my tablet, drop off my Teaching Work Sample (a huge project that I worked on for almost 12 hours yesterday! It's so hard to focus with the pain, but if I didn't get it done, I would have to take an incomplete for the semester until I finished...) and then I have graduation practice.

I can't believe that at this time tomorrow, I will be a college graduate. Woohoo! It's been a long, rough road... but God, my family, and friends have been there to help me get through it. I'm so thankful that it's almost here. I've been counting down for months! :)

I suppose... I should finish backing this up so I can get ready to head to Madison.

Oh! I forgot to mention the most important thing! My appointment with Mayo is on Monday. My mom and I are heading to Rochester on Sunday. Who knows how long we'll be there--I will have my phone and computer, but I may not update much. Please please continue to pray for me! I'm hoping to find some answers and some relief from this awful pain!