May 15, 2015

This is my FAVORITE TIME OF YEAR - SYTTENDE MAI!!!! What is that you ask??? It means, 17th of May in Norwegian. This is significant because, this is the HUGE festival celebrating Syttende Mai in Stoughton, WI. Syttende Mai (17th of May) is the Norwegian CONSTITUTION day. "The Constitution of Norway was signed on 17th May 1814 at Eidsvoll and as per the constitution Norway was declared to be an independent nation. The reality that this CONSTITUTION came in context with a very strong movement in NORWAY for INDEPENDENCE from SWEDEN." -- THIS CONCLUDES YOUR WORLD HISTORY LESSON OF THE DAY!!!! So anyway -- why does it mean so much to me??? Well, there are several reasons. I was born and lived just north of Stoughton in Madison. My husband had a family cottage in Stoughton. This cottage was built by my husband's father and grandfather. We spent a considerable amount of time at the cottage. Our children grew their and in the lake in the summers. We ALWAYS attended the Syttende Mai festival every year. Then for four years, I participated in the run/walk (17 miles) from Madison to Stoughton. I LOVED this!!! It was really hard work and this is when I first noticed symptoms of my Multiple Sclerosis (M.S.)! I did not understand at the time and neither did my doctor. M.S. can be misdiagnosed for years and that is EXACTLY what happened to me. After I was diagnosed with M.S., my body really fell apart. I had a HORRIBLE time walking. I had to use either a walker or cane to get around. It was a very rough few years (understatement). I longed to get back to a point just to walk that kind of distance. My children knew how much it meant to me and how much it hurt my heart not to participate. So they did the 17 mile race, Jeremy did one year and Elyse did 2 or 3 years. In the meanwhile, I was working on my nutrition and exercise. I was actually getting better and stronger. I achieved being able to run the 10 mile RUN - 3 YEARS IN A ROW. Last year, was pretty much a disaster!!!! Yes, I did run the 10 miles without question. But at the same time my M.S. was really working on my body. It had deteriorated and weakened my left hip and ankle muscles. I ended up with MULTIPLE TEARS IN MY LIGAMENT IN MY LEFT ANKLE. (This has always been my weaker side.) I still ran the 10 mile run last year and finished running on Memorial Day with a 5K in Pecatonica. Since, then I had STOPPED running on the advice from the doctors and physical therapist. They wanted me to allow the tears to heal. I started running again this spring. The whole time, I was noticing that my left foot/ankle seemed to be falling outward. So my ankle bone is moving closer to the floor instead of nice and erect like my right ankle. I went to my Neuro doc and asked for maybe needing a brace for this ankle. He sent me to the Orthopedic Rehab. Now my diagnosis is that I am developing a club foot and need surgery to correct this. GREAT!!!! I have been dealing with this SHIT (YES - I said, "SHIT") for 1 1/2 YEARS... I have been going to Drs and try to be proactive with my health issues. Then I had another HUGE WHAMMY from my monster - MS!!!! I became ill with an UTI (Urinary Tract Infection). Since, the MS has deadened some of my nerves - I NEVER HAD A CLUE. So I did not have any of the obvious symptoms - ie burning upon urination. Yes, it sometimes took me longer to urinate but.. that is not an uncommon issue with folks with MS... You deal with it and get over that... Well, one morning the UTI decided it was not getting any attention so, it decided to FUCK with my M.S.. I was LITERALLY at the gym, doing my usual early morning workout. I had ran, done pushups, planks, etc.... Then all of the sudden it felt like I had a REALLY BAD "charlie horse" in my legs. Plus, I had a very strong, urgent feeling to defecate. I crawled and held on to wall to get to the bathroom. I was a bit late. So I cleaned myself up and was hurting so horribly from this "charlie horse" feeling. I thought maybe the warm water in the shower would help to calm down the nerves. As I was getting undressed, I realized that my stability was deteriorating more and more. So the thought of wet flooring and being less and less able to stand unassisted was probably not a good idea. So, I got back dressed and just sat still for awhile and tried to do some breathing exercises to calm myself. As the story goes, I ended up calling my daughter to assist me and ended up in the hospital. My mobility and neuropathy has been HORRIBLE, and this is saying it mildly. I have not been able to run. I have tried but, there is NO WAY. I have really been focusing on my Pilates during my early morning exercises. This week, I have really noticed a break through. My walking ability has really improved. Also, my overall strength and stamina has improved. Last night, I was teaching Pilates - and noticed - WOW - I was really plowing through some of the more advanced moves. I WAS SO EXCITED!!!! This made me plow through more and longer Pilates holds... I was just ripping through 1 minute planks like it was nothing. The students were pretty toasted by the time I was done... This is the first REAL ENCOURAGEMENT I have experienced from my body. I am still not able to run but, MAYBE by Memorial Day -- who knows... Right now, I am focused on my biking. Tomorrow, I am off as an OFFICIAL FOR THE SYTTENDE MAI 10-MILE RUN. How many miles I will actually do, we will find out. So YES - the MS Monster has been really working on FUCKING with me.... But, I am DETERMINED AND VOW - NOT TO ALLOW IT TO TAKE ME DOWN EASY. It messing with one EXTREMELY STUBBORN AND MEAN IRISH GIRL!!! SO YES -- TO HELL WITH THE MS!!!! I REFUSE to let it inhale me... I will always fight and work my damnedest!!!! So YES --- FOREVER FORWARD!!!!

April, 17, 2015

Yes, a picture saids a thousand words... You guess it, I'm in the hospital due to the DAMN FUCKING MS!!!! So here's my story... I have on the whole been doing OK.. Still have issues with my running.. but I 'm in run club and run/walking about 3+ miles... I have also been working on my biking. I am trying to get ready for biking the Syttendi Mai run. So I will be biking a mininum of 20 miles over from Madison to Stoughton. Yesterday, all Hell broke lose... I was at the gym at my wee hours in the morning... I have been working on the various challenge exercises that have been laid out by my friend Laura... I just finished my second round of week 4 & 5 when all the sudden I felt like I had a VERY INTENSE feeling in both my legs. It was like a VERY INTENSE Charlie Horse. It literaly dropped me to the ground. I also had a very strong urge to poo. I crawled and hung to the walls to get to the bathroom. I was unsuccessful in achieving the goal... DAMN MS!!! My legs were still in hyper-spasm. I cleaned myself up the best I could and crawled over the shower. I was thinking that maybe a shower would help the spasms to calm down. I tried to take off my clothes but I realized that standing in the wet shower floor would probably be a disaster. So I put my workout clothes back on... After a short bit, my gym buddy, Velda, came in the locker room looking for me... I explained the situation and asked her to get my phone from my car. I called my daughter and told her the situation. She came and by that time I could not even stand up on my own. It was REALLY FRIGHTENING!!!!! She did not even feel confident that she could help me to the car. So we called Pec Ambulance to help walk me to the car. I will not ALLOW THEM to take me in the ambulance after my horror from my one and ONLY encounter with their services.(Another long story...) Elyse then asked which hospital to go to. I thought Swedes in Rockford since that is where my primary DR resides. That was not the wisest choice... There was a total of 2 of us in the waiting room... I waited for HOURS... Finally they put me in a room with a guy with active pneumonia who was not responding to his treatment. So he is hacking a lung... Elyse and I saw masks laying on the counter.. she grabbed them for us... We asked to be moved they said they could not do that,... Finally we moved to another private room in the ER... and waited and waited... It was forever... about 3 hours+. Elyse went to get something for lunch and ran into a DR, he asked what she was doing there. The amazing thing is shortly after she saw him the DR showed up in my room... HMMM... My legs where still really bad.... They had pulled a blood draw from me... and said that I had a UTI... surprise... I had no clue... so I got IV antibodtics for that... Then I got moved to a regular floor. They did not want to discharge me since I was unable to walk on my own. In the mean time, I called my neuro at UW and told him the situation. When I was in the room I saw their Neuro... He asked me about how many MRI scans that I have had. I told him I only had scans at my initial DX. He proceeded to say some things that I felt was very unprofessional about my neuro. That did not sit well with me... I ended up having brain and full spine MRI. Last night the pain was HORRIBLY intense in my legs. At first I recieved only a Tylenol.. It did not do a thing... I then asked for something stronger, which I recieved. That helped so I could at least sleep for a solid 4 interupted hours. Now I'm currently still in the hospital. They are waiting the MRI results before giving me any more steriods. I am still getting the IV antibotics for the UTI. The other very disappointing thing is that I missed the first day of our bike club. I have worked so hard with my other cohorts to get this started. There was a good group that showed up about 20 people... I was THRILLED!!! I can't wait till next week.. I'll be there in all my glory. So as always I will continue moving forward.. ALWAYS AND FOREVER FORWARD!!!!!

March 26, 2015

It has been quite awhile since I have written. It has been a VERY CHALLENGING YEAR!!! The DAMN MS has a powerful grip even with all my efforts. It still knows and does attack in the most vicous and unforgiving way... So my runnng last year was minimal. It was all due to the torn tendons in my left ankle. My last REAL run was for the Pec Library - Memorial Day 5K. Then I was doing an eminse amount of physical therapy. The PT was GREAT and actually understood MS. It is AMAZING how many health professionals do not get the various aspects and quirks of MS. We worked on strengthening my left hip and ankle, One thing, I was able to do without causing greater injury was biking. So, I bought myself my FIRST 21-speed bicycle. I called it my "big girl bike". I did a few organized bike tours. My longest ride was 66 miles!!! I really loved it!!!! Plus, over the winter I had to have a round of the YUCKY steriods. It was not due to the MS. It was some weird allergy. We still have no clue of what caused it. I was broken out EVERYWHERE!!!! I REALLY mean EVERYWHERE. So a good month of that horrible stuff. Yes, it did take care of the hives but it also left me with an extra 20lbs!!!! DAMN!!!! I did keep with ALL my regular exercise, indoors. I have even progressed with my Pilates to the point that I am teaching it at Summit Fitness. I have been substituting for my friend,Laura, but now I am a PAID instructor!!! I plan on getting certified in Pilates this winter. Right now, I have too many things keeping me VERY BUSY!! I am still working full time. Plus, spending as much time as possible with my little grandsons!!! The other thing I have started with a couple other folks is a BIKE CLUB in town. We are planning on starting on April 16th!!!! I am REALLY excited about that!!! I am still a member and believe it or not a leader of the RUN CLUB. I am going to lead the beginner group with a couple other people. To think, IN LESS THAN ONE YEAR... I was running 12 miles at a time now to a walk/run status. It is VERY frustrating! I try to keep with my mantra -- ALWAYS FORWARD!!!! I am going to do short runs now. Plus, my biking I can go as far as I want. I AM NOT ALLOWING THE MS TO TAKE MORE FROM ME!!!! I have set my goals for this year. They include: a triathalon and to bike to Madison, WI and back. I also plan on doing some bike tours. In fact, I am helping to organize a bike tour in Pecatonica on Memorial Day weekend. My usual first big run for Syttende Mai in Stoughton,WI will be different this year. Since, I cannot run it. I have contacted the organizers and told them I want to volunteer to bike the route and monitor the safety of the runners. This way I am still involved with an event I TRULY love!!!! I am not sure if I am biking the 20 or 10 mile runners. Either way, I am going to be putting on some decent miles and getting a workout. So as you see,even though the DAMN MS has tried its damnest to knock me down. I have picked myself up and going about things in a different route. As for my ankle situation, even with my continuing the PT exercises (3X/week), the alignment of the ankle and leg is getting worse. It is getting to the point, that I am feeling it in my joints. I had an appointment with my neurologist at the MS Clinic this week and that was one of our discussion points. He is having me go to the Ortho/Rehab to see about getting a brace for my ankle. I have been wearing when running a soft brace recommended by the PT and the podiatrist. But that is not doing the trick. The muscles in the ankle are rotating outward. So of course, I am feeling pressure in my knee and hip. This is NOT COOL!!! DAMN, FUCKING MS!!!!! So if getting a brace to help/keep alignment then so be it.... My joints are way too damn precious!!!! That appointment has already been set and in April sometime. Till then, I will wear the soft brace when I run or long bike rides!!! As for the rest of my LOVELY (ironic... smirk) symptoms, I have been having same amount of numbness in legs, arms, and face. My urinary issues have been more apparent. My night time frequency/urgency has increased to sometimes 5X per night. So he just prescribed me meds for that. My sleeping pattern is still SHIT!!! I go to bed about 10-11 and the damn legs are moving by 4-5am. So I get up and go to the gym. It is usually quiet there and it is mostly the same group of people. I tend to go off and do my Pilates and various floor exerices without anyone near me. He has offered me countless time something to help with the sleeping issue. I refuse!!! I do not want to be a ZOMBIE because of sleep meds. I am used to my weird sleep pattern. I just want to stop the endless trips to the pottie!!!! It does sometimes upset me that people do not SEE MS always. Therefore, if you are not using a wheelchair or cane or wwhatever that everything is just PEACHY! Well, I can tell you that it is NOT PEACHY.. MS SUCKS!!! So --- here I am still fighting and taking alternate measures to keep moving forward. ALWAYS FORWARD!!!!