Missing my hubby

There are certain voids we all have in our lives that simply can't be filled. Not by staying busy, not by friends, not by jobs. Mark leaves such a void every week when he leaves. Doesn't matter how busy I try to stay (not that I can do much in the bloody chair. I still can't figure out how wheelchair companies get away with calling a chair that weighs 35 freaking pounds "lightweight". No one is a chair can lift that. Therefore, your housebound). My friends are absolutely wonderful. They focus on coming over when Mark is gone so I rarely spend an evening alone. I love them even more for that. However, there's still nothing like having Mark home. Even when he's in the other room watching whatever sporting event is on at the time, just knowing he's here makes me feel so much more secure. It has nothing to do with independence. I'm still independent, well as independent as the chair will allow me to be. It's about emotional security. The type you can only have in a loving stable relationship where you really are equal partners. Partners who put each other first. I miss my partner when he's gone. You'd think with him being gone 3 days every week I'd get used to it. Nope.

Taking Time to Stop to be ME

Sometimes we get so caught up in life that we forget to simply ......stop. We get caught up in the day to day duties of having a job, a family, simple responsibilities that really aren't all that simple. Add a few family issues, health issues or job issues and without realizing it, we are like a dog chasing our tail. Running in a circle. Trying to be everything to everyone. Devoting and giving so much of ourselves to everyone else that we loose sight of what's really important. For me, I haven't been caught up in trying to be everything to everyone, I've simply been trying to deal with the curves I've been thrown the past few months. Appointments, therapy, treatments and trying to adapt has taken all my time and energy. So much so, that I forgot to stop. Until today. I don't know what triggered it. Perhaps I simply had enough and my coping mechanisms put on the brakes. Or maybe I'm over the emotional hurdles of the past few months and I simply....... stopped. I stopped and smelled the rain in the air. I noticed how green the grass is and the slight cool crispness in the air. I realized that summer is gone and fall is here. In the business of simply trying to get through all my challenges, I missed the entire summer. Summer came and went and I missed it. I missed the summer flowers, the summer showers and long summer drives. Granted I had a legitimate reason, but I still should have taken the time to stop, and because I didn't I missed an entire season. So, from now on I will stop, everyday. I will take the time, even if it's just a moment, to close my eyes and savor the scents and sounds of fall while I give thanks that in spite of all the challenges that have been thrown at me, I'm still here and I'm still ME.

A near disaster and an "off" day

While attempting to get out of the recliner this evening, I of course, stumbled. While I was trying to grab anything to avoid yet another fall, I proceeded to knock my laptop off the table and onto the floor. Can anyone say OH SH*%!! Fortunately the laptop weathered my inability to stay upright. (THANK GOD). Tomorrow I see the insurance MD about the MS, the chair etc. Ought to be very interesting since he doesn't give a rats patootie about me. It's all about the insurance company. I'll blog tomorrow and let you all know how it goes. Today has been an "off day". I'm very tired and had a bout with TWF (train wreck fatigue). It's actually been several weeks since I experienced it. Personally, if I had a choice, I'd pass on it. 4 hour naps pretty well disrupt your entire day. Oh, and i just realized it's shot night. Perfect. Just Perfect. Better take it out of the fridge now while it's on my mind and pop the IBU. Of well, just another day with MS.

Pondering

I swear Tivo is the best invention since the automobile. I'm doing my treatments for the evening while I'm watching the premier of Hero's, which I the other night. I'm glad the fall season has started as watching the programs keeps my mind busy while I do my evening treatments. I don't watch many programs as i feel most of the stuff on TV is garbage. Ever since Sex and the City ended on HBO, little on TV has managed to keep my attention. I watch Hero's, Grey's Anatomy, Ugly Betty and Ghost Whisperer. That's about it. The great thing about Tivo is that I can watch my shows when I want to watch them. Stop them, and finish them over a period of time. Anyway, I digress from the topic of the evening.....pondering. Wondering what the future holds now that I've moved from the cane and walker into the chair phase. Fortunately, I still have the use of my legs. Although I'm falling on a daily basis. Including today when I try NOT to use the chair. My poor knees are scuffed up and rug burned from falling. Of course, the battle with the insurance companies has started and will take up most of my time and energy fighting them. Here's irony for you. They authorized the wheelchair, and denied the shower chair. Go figure. I think they have just given me a taste of the battles to come. So, not only do I have to do battle each day with MS, I now have to start preparing to do battle with the insurance companies. Great.

The call to blog.

I've realized that if i don't blog according to my usual pattern (daily) folks start worrying about me. So I figured I better get a quick one out to reassure everyone that I am alive and breathing and not curled up in a fetal position somewhere bemoaning the "chair". OK...so I may not be curled up in a fetal position, but I will admit to bemoaning the chair a bit. OK, maybe more than a bit. I kinda feel like the horse pictured above. I just want to lie down....for as long as I can. In reality I know I can't, so I'm getting used to maneuvering around in the chair. Fortunately I can stand, a bit wobbly, but I can stand none the less. Which makes it a lot easier than it could be. That's just me the eternal optimist....saying it could always be worse. On a positive note the machine is really helping with the pain. It's a lot better than it was. Sleeping still tends to be hit and miss, with more hits than misses, thank God. As far as the MS, well it pretty well sucks, but what is, IS. I try and focus on the good things in my life. If I sat around and just thought about the MS all day, I'd be a basket case, ready for a rubber room. There is so much needing to be done in the house, and right now I am little help. The electricians are coming tomorrow to put some additional plugs in the garage so Mark can start drywalling and putting up shelves. The next big priority is getting HIS office together. We'll be busy working on the inside of the house this fall and winter. We're still enjoying the front patio we had poured in June. Hopefully we'll be able to enjoy it for another month before the weather gets too cold and the snow starts.

Blessings

No, I'm definitely NOT going to count MS in the Blessings category today. In fact I'm not going to blog about MS in this blog entry. The purpose of this blog is to thank all the wonderful friends and family I have that support me and love me unconditionally. Especially my husband. They read my blog daily and then send me emails asking questions, offering support and their endless love. They don't comment publicly on the blog, they prefer to keep their comments private. One of the reasons I am able to keep from leaping into the abyss of depression that yells my name is because of them. They each seem to know instinctively when I'm wavering and one of them will email or call. Like my brother did this morning. His timing couldn't have been more perfect. (I will restate to him...wheelies are out). So this is a very public Thank you and I love you too to each of you.

Defining who I am.

Needless to say the past few days have been quite an adjustment. For both my husband and myself. He left this afternoon for business and won't return until Thursday evening. I SO did not want him to go. Partly because I'll just plain miss him, partly because I'll be on my own, in a chair for the first time. Fortunately, I can stand with the chair behind me and function in the kitchen. I'm wobbly, but at least the chair is behind me if I loose my balance. I refuse to relinquish my independence. I WILL continue to do everything I did before. My identity is NOT the chair. I'm still ME. That hasn't and won't change. I also refuse to get caught up in the "poor me" cycle. YES, this SUCKS. So what. What is, IS. I have no choice but to accept and more on. Hoping that this is temporary and I'll be on my feet again soon. Meanwhile, I continue to take my meds. and use the machine. I think that keeping a positive mindset is the single most important thing I can do. Often it is the most difficult. I think adjusting up on my meds will continue to help me with that. Internally, I'm the same me. Nothing is going to change that. Chair or no chair. MS or no MS. I'm very blessed to have a wonderful support group of friends and family. They help keep me balanced and my perspective rational. They also help me be me. They don't see the chair, the walker or the cane. They see ME.

wheelin around

Physically adjusting to the chair is easy. It's a matter of navigation and coordination. Even Maggie, the cat, has jumped on my lap a few times. Valor, the dog, is learning to get up and quickly move out of the way when he sees me coming. My wonderful husband build me a ramp for the front door so I can come in and out without help. He even bought me a pair of padded bicycle gloves to help protect my hands. They were starting to get pretty sore. Talk about exercise! My arms will be in great shape in short order! The emotional adjustment will come in time.

Chair

My wheelchair was delivered. I am sitting in it as I type. Quite and adjustment let me tell you. One I'll make over the next few days. One of the things I love about a new car is the "new car smell". I always wish I could make it last forever. Well, new wheelchairs have a "new wheelchair smell". I think it stinks LOL. Although that could also be my mindset over being in a wheelchair to begin with. My husband and I made a "rolling" tour of our home. It's an entirely new perspective. What think we had that blocked my "rolling" path from room to room. A pleasant surprise was that there aren't very many changes that have to be made. Moving the hamper in the laundry room, making sure the office door is open so I can back into it from the hall way to get into the second bathroom etc. Fortunately the layout of my kitchen with the center island leaves more than enough room for me to get around in the kitchen. We had to push the recliners forward a bit in the family room so I could get between the island chair and them. All in all not to bad in the house department. I won't be able to get outside without help. Once I'm outside everything is fine. So, we'll be working on ordering some threshold ramps. Of course my dog is a bit confused. He has to get up every time I want to get past where he is (he was 119 pounds at his last weigh in. He is a massive Golden lab). He'll catch on after awhile, or he'll just find a spot where I rarely go to lie down! Poor fella. Maggie (my cat) hasn't come near me in the chair. I don't know if she's afraid of it or what. (Maybe she doesn't like the smell either LOL).

Update on treatments

The STS treatments are going really well. Right now they take up a lot of my time hooking myself up three times a day. Who cares, it's really helped my pain level (I now don't have ANY) and I'm starting to sleep! If the treatments do nothing else, I'm a happy camper! I've also noticed a big difference in my fatigue level. While my energy level isn't anywhere near where I'd like it to be, it's been about 50% better since I started on the machine. With the improvements I've already seen I'm very hopeful my insomnia will be relieved and it will keep my pain level under control. As far as the MS, that's going to be a much slower process. So the jury is still out on that. I asked my MD to increase the dose on my antidepressant yesterday. Depression is a very common problem with MS. Fortunately, while I may be stubborn, I'm not stupid. Depression is nothing to mess around with. So, she doubled my dose. I'll know in another week or so if it's helping. I got a call from the folks bringing my wheelchair. It will be here in about an hour. Big freaking yippee. Of course, after the near fall I took this morning I think my husband will be very relieved when it's here. I'll adjust. Were also waiting for insurance approved for a lightweight rigid chair. They said we would know by next Friday. That would be a chair custom made for me, easier to maneuver and customizable (Ahhh a way to express my personality...perhaps I'll have it painted in a leopard skin print). Of course, the hope is that in a few months they are in the GARAGE. On a positive note.....if I have to stay in the chair...by next summer my arms will be BUFF! (OK....I'm REACHING for the positive I admit it).

New MS phase...wheelchair

I didn't blog yesterday. I wasn't in the mindset to do do. I went to the Doctors yesterday after having multiple falls this week. My legs continue to get weaker. In a nutshell...I have now graduated to a wheelchair. It's amazing out our coping mechanisms kick in. I recall being very matter of fact about it in the doctors office. I completely understand the rationality and reasons behind it. I was actually quite rational about it. Even more so when my mom called last night and I explained it to her. (You can have everyone else freaking out and upset when internally I'M freaking out and upset). Actually, I wasn't freaking out and upset. My defense mechanisms had kicked in and I was just really at a loss. I didn't know WHAT I felt. I felt I was just losing the grasp of what was happening in my life. So, I grabbed onto my life line, Mark. My animals seemed to sense instinctively that something was wrong and rallied around. Maggie (my cat) has not left my side and Valor (my dog) will walk over the where I am sitting and "check on me" very frequently. One of my friends became tearful when I told her, another paused and said, "So what I love you anyway". I find I'm still numb about it and looking at it in almost a detached way. Going through the motions of getting insurance approval and meanwhile using the walker exclusively and spending the majority of my time sitting. (OK, so I can enjoy that part)! At least I will be able to get out of the chair and do things like use the bathroom and take a shower without being totally dependent on someone else. I'm also hopefully that this is TEMPORARY and the treatments will if not help heal damage, at least stop further progression. It's likely the defense mechanisms will remain fully in place until I actually receive the chair and sit my hind end in in. Then I'll really have to face it....until then I remain safely embraced by my defense mechanisms, and I fully intend to stay wrapped in them for as long as I can!

Treatment Pictures

Various Pics taken during treatments. Non-invasive and NOT painful. In fact, I had no idea how much pain I was in until the treatments took it aways. Now I get 2-3 hours of TOTAL pain relief after I run my pain protocol. It's amazing. (Terrible pictures of me).

USS Lexington and Our Texas Pictures

While we were in Corpus we tried to do a little site seeing.

We took a quick tour of the USS Lexington. The things that impressed us was the sheer size and how HOT it was inside. Even with the air conditioning system they had installed. We couldn't imagine how hot the ship was when it was at sea and engaged in battle. Another thing was how steep an narrow the stairs were. Hollywood makes running up and down them look so easy! (Of course, being wobbly and trying to use a cane makes it a bit more challenging). Unfortunately I didn't have the leg strength or energy to see more than we did, but we enjoyed what we did see.

This is a view from the carrier deck. It is HUGE. It was great to walk around the planes. Although Mark did much more walking than I did. I tended to find a spot and stay there.

The Alamo

While we were in San Antonio we visited the Alamo as neither Mark nor I had ever seen it before.

Corpus Christi

Boarding starting in Corpus when Ike was predictd to make land fall there as a category 4.

I've lost my sense of humor.....

and don't know where to find it. My sense of humor regarding dealing with MS anyway. I follow other blogs written by folks dealing with MS. (Some, on a daily basis as they post as regularly as I do). Their blogs are filled with wit and humor in dealing with MS. They always seem to find something funny to write about daily with their experience. Well, right now I don't see anything to be witty or humorous about regarding my journey with MS. Not right now. I find nothing funny in stumbling around. Even using a cane. Nothing funny about having to literally lift my left leg to get in and out of the car. I am not amused with the fact I can no longer get in and out of my bathtub, my huge, wonderful soaking bathtub, without help. Nothing remotely witty about the MS induced insomnia and pain. Nope. Nothing funny there at all. So, instead of focusing on the negative aspects of MS, I'm focusing on what I'm going to DO about it. The first step was getting my hind end to Texas and starting treatment. I'll be going back before the holidays for more treatments, but haven't decided the exact dates yet. The second step is following the treatments and keeping my expectations REALISTIC. (That step is in progress). The third step is simply doing the best I can with the cards MS has dealt me. I'm working on that. I try not to allow any limitations stop me from doing what I want to do. I may have to modify things, but I don't let it stop me. Really, I think "Not letting it stop me", is my overall goal with MS. Goes back to the decision to live my life and not the disease.

I HATE MS

I am so NOT having a good day today. In fact, the past two days haven't been great. Neither one of my legs are following instructions, my hand are shaky and I HURT. Both legs feel heavy and like they are on fire. I'm tired of the MS induced insomnia. I have NO problem dropping off to sleep, but I'm awake every hour. Two if I'm LUCKY. I broke down yesterday and called the clinic in Texas and asked for protocols to help. I'm running the pain protocol for my hip as I type hoping it helps with all the leg pain. My body feels like it was hit by the MS truck, then it hit reverse and ran over me again. This has been coming on for the last few days. I actually had to use a wheelchair at both San Antonio and LAX airports. My legs just wouldn't work well enough to do the walking. I've come to the realization that I truly am cane dependant now. Great. Just freaking great. I feel my independence trickling away drop by drop. It's impossible NOT to be angry about that. I'll come to terms with it, like I have with all the other aspects of MS I've experienced, but right now I'm angry. I wish I'd get a break. I'm not feeling sorry for myself. I've never felt the need to ask, "Why me". My philosophy is, "What is IS". However, right now...I want MS to BACK THE H*LL OFF!

Almost back to reality...and home

Today is our last day in Texas before we return home. We made the drive to San Antonio after being able to change our flight tomorrow from evening to early morning. We didn't want to make the 2 hour drive in the morning. We would have had to get up WAY to early. (I am not, never have been, nor ever will be a MORNING person. My husband, bless him, knows that and likely did not want to have to deal with trying to get me moving as early as he would have had to). I even did one of my treatments on the drive from Corpus to San Antonio. We have an adapter that lets us plug in anything to a car plug in, so I did the 40 minute treatment for my left hip pain on the way in. It was great! So far, I'm very pleased with how the treatments seem to be going. It's amazing to have blocks of time with no pain. With the MS I have shoulder pain, wrist pain and misc. aches. Not to mention the terrible muscle spasticity that seems to have a mind of its own no matter what I do. In fact, the muscle spasticity really messed with the treatments this week. I was supposed to have the rest of the testing completed on Wednesday. However, I had a really bad bout with muscle spatiscity Tuesday evening, and Dr. Rhodes put a nix on the testing of the right side of my body. The testing consists of them wrapping electrodes around your toes to start, and sending electrical impulses to them. You tell them when you feel them. It tells them how sensitive the nerves are to the impulses. The interesting part was that you could feel the impulses anywhere! I felt them in my calf, my ankles and of course my toes. Dr. Rhodes felt that my nerves were hypersensitive as a result of the spascity and didn't want to stimulate them any more than treatment required. So no more testing. The days I spent at the clinic were really informative. I learned a lot. The machine I'm using basically stimulates the nerves, the sympathetic nervous system and stimulates the release of neuropeptides. I sure can tell the difference with my pain level. Dr. Rhodes also gave me a protocol to run at night to help me sleep. I don't know about the rest of you, but MS really messes up my sleep. The protocol hasn't worked well with me yet, but like the protocol for the MS, it takes time and I won't see results immediately in those areas. Plus, sometimes it takes time for them to find the right beta frequency for each problem you have. I know he hit the nail on the head with the frequency for my pain though, as well as the frequency to improve my kidney function. I'm peeing all the time! Which is great. It means all the bloody steroid water weight is coming off. It also means that the MS protocol is working and improving my general circulation. Which is a MUST if my myelin sheaths have any hope at healing. I'll be heading back to Texas, likely in November (I'm trying to wait until Hurricane season is OVER after this last experience, thank you very much). It will depend on how I do. If I notice the machine doesn't seem to be helping I'll be back sooner. (which SHOULD happen as the serves get used to the stimulation. The frequency and intensity will then need to be adjusted. So I'm actually HOPING the machine "stops working" in about 6 weeks or so). I know with MS, nothing is a guarantee. However, for me, when you have the fight with MS like I had this summer and they are telling you what treatment options are left have very high risks of cardiac damage etc. well......NO. We have to make our own decisions as to what risks we are willing to take. I'm still going to go to UCLA. I'm going to listen to what they say, but, it's all a crap shoot. So, I'm taking my chances on Dr. Rhodes. This treatment is non-invasive. It's not been "black boxed" by the FDA and it's made me pain free. So far there isn't a negative. I'm still taking all my "traditional" MS meds. Rebif, Neurontin, Klonopin, etc., etc., etc. I'm not stupid. While I wish I could just stop all the meds, I know I can't. I'm still walking with a cane. I'm realistic that there is no miracle cure. However, I'm giving it a shot. I'm hopeful, optimistic and feeling good. Healing begins in the mind and with your attitude. It's all about faith, hope and trying. MS hasn't taken any of that from me. I won't let it. It may have messed up my vision in the right eye, my left leg may be very unsteady and untrustworthy, my hands may tremble and drop things. I may tire very easily. Yet, somehow, call it sheer will or determination; Hope, Optimism, the Will to keep going and faith remain strong. MS may yet kick my butt. I may yet end up in a chair. BUT, no matter what happens, I'll know I fought this disease with everything I have. It may push me up against the ropes again like it did this summer. I expect it. I hate it, but I do know it will try. As I will try with everything I have to fight against it. Even if it means trying "nontraditional" treatments like the one I am now.

Post Ike

Corpus Christi got VERY lucky and dodged Ugly Ike. Originally, Ike was predicted to make landfall here at Corpus as a category 4, until he decided to veer left. Here at Corpus we had wind yesterday evening, dark skies and nothing else. Not even any rain! We're flying out of here tomorrow. What an adventure! Of course, watching the news reports out of Eastern Texas is heartbreaking. Makes me glad to live in earthquake county where 99% of shakers are small, non-damage producing and just enough to unnerve you. No such thing an a non-damaging hurricane or tornado (Even if it hits a corn field it just wiped out a farmers crops). So, my husband and I will go home tomorrow. Thankful we live where we do. Of course, I'm due to come back in another 6 weeks. Hopefully, AFTER hurricane season is over!

Ike Strikes

We were unable to get a flight out so we will be riding Ike out in Corpus Christi. Fortunately for us, Ike veered right, so while we expect heavy rain and some wind here, we should be spared the experience the poor folks in Eastern Texas are going through. We have, however, prepared. (To reassure my family and friends). We have water, candles, sandwiches, granola bars and most importantly Beer, wine, cheese and cracker. (Hey if you got to ride it out may as well do it in style). Of course, the irony doesn't escape me. I come to Texas for medical treatment. We plan it so we miss Gustav and then Ike decides NOT to follow where he was supposed to go....up the Atlantic coast! We will be fine in Corpus......pray for those in Eastern Texas. Those poor folks on the coast there won't have anything to come home to.

Treatment cut short

Darn Ike anyway. Thankfully, Ike has decided (at least for now but no one really knows for sure until he makes landfall) to veer right. Which means that Corpus Christy won't bear the brunt of his ire. Unfortunately, some other area will. Looks like we will have heavy rain here. Hopefully nothing more. However, because of the severe weather the clinic decided to close until Monday, which means no more treatments in the clinic. Fortunately, I have the protocols and the machine, so I'm still be receiving treatments, just not new testing and "tweaking". It also means I'll be returning to Texas a bit sooner than I would have, but that could be fun :) The pain in my left shoulder and hip is completely gone following each treatment. At this point I'm getting about 2-3 hours of total pain relief. It's amazing. I add a second treatment in the afternoon for me hip which gets me through almost until my evening treatment. Can't beat that! So far, just on that basis alone I'm thrilled with how it's gone. As far as the MS, time will tell, but I'm optimistic.
So, we will be here waiting out IKE and hoping to catch a flight out of here on Sunday. Not much "touristy" things to do this weekend as everything will be closed with the storm. We're even changing rooms tomorrow as our current room is on the 3rd floor and facing the direction of the storm. So we're going to the first floor in another area. Our plan is just to relax, wait it out, enjoy quiet time with each other, and then get home!

Treatment Day Three....and Ike

Treatment is going well. I am amazed at the pain relief I get from the machine. Although last night was a bad night with muscle spasticity. Another one of those nights where, frankly, I just laid on the bed and prayed for relief. Thankfully, they passed, as they always do. The most pressing issue now is Ike. He can't seem to make up his mind exactly where he's landing or how strong he's going to be. When Christi was going to take a direct hit, no question, we were outta here. Now it looks like he may hit further east up the coast, in that case we'll be hanging around and actually staying longer so I can finish a week of treatment before heading home. So, we'll see. We'll either be on a flight home tomorrow evening (IF we can get one) or next week. I've enjoyed the "quiet" time with my husband though. I have to be honest, I am more amazed (in a POSITIVE way) by the man I am married to each and every day, and VERY thankful! He has been so incredibly supportive and right there with me through all of this. Heck, we may even be riding out a hurricane together in the next few days. Good thing we're such a great pair!

Treatment Day Two....and Awaiting Hurricane Ike

Today we only spent a little over two hours at the clinic. The two hours was filled with testing new protocols then running the two new protocols the Doctor chose for me based on today's results. One of the new protocols is specifically geared for my left hip. I had a bad fall in May and really messed up my pelvis and left hip. The pelvis healed with the left side tilted incorrectly, leaving me with chronic pain in the hip. After I had the treatment for the first time since May 18th my left hip was absolutely PAIN FREE. So, I can tell you, if you know of anyone who suffers from chronic pain, send them the link on this blog for Dr. Rhodes. I also had the opportunity while I was at the clinic to meet another MSer who was there for treatment. She has been using the machine for a month and was there for a "tune up" of the machine and a follow-up. She lives in Texas and makes the 9 hour drive to see Dr. Rhodes. When she started treatment she could barely walk, had hand tremors and apparently was in pretty bad shape. Well she is now walking without any assistive device, I saw no hand tremors and she said she is sleeping a solid 8 every night. She was very excited about the results she had seen after just one month. Personally, I would be happy if my hip pain would go away forever, I would sleep at night and it would stop my muscle spasticity. Not to mention stop the progression of MS. Time will tell. I do know the my left hip pain was totally gone for about 2 hours following the use of the machine, my energy level after using the machine is WAY up. I also noticed something else, my mood is VERY calm. I'm very relaxed, like I've had a massage. I felt this way yesterday too. It's amazing. I'm looking forward to seeing MY progress in a month, then 6 months from now. I have to be honest. I came to do this really HOPING it would help, but very skeptical. I'm becoming more of a believer. I'm DEFINITELY a believer it helps with pain control. I just hope I can actually complete my round of treatments here. We are in Corpus Christi and, like everyone else on the coast of Texas following to see where Ike lands. At this point all anyone knows is Texas IS Ikes intended target. Just where in Texas he will hit is still up for speculation. Of course, being on the coast, and depending on how far away the direct hit is, we will see some of Ike's ire. So, we made sure the tank on the rental car is full in case they issue mandatory evacuation for Corpus. I've been through a tornado, rode many an earthquake in California....so heck, why not experience a hurricane?

Treatment Day One

Pain Free At Last!

What a day! I spent almost 4.5 hours at the clinic today being evaluated by two MD's (Dr. Rhodes and an Orthopedic to make sure none of my problems were orthopedic in nature). Was Xray'd. Had a nerve conduction test on both arms and both legs. Circulation tests. Then, the hooked me up and did all kinds of protocol testing on me with a computer to find the right protocols for me. Not only did he develop a protocol for my general MS symptoms, but also a protocol for my shoulders which have been bothering me for months. It's an amazing process. Your all wired up and it looks like something you would see in Dr. McCoy's office in Star Trek! After they did the computer testing (during which time they run protocols on you with stimulate your sympathetic nervous system. All the while they have a temperature probe on each forefinger. The fluctuations in your temperature tells them to what degree your sympathetic nervous system is being stimulated. It was really amazing. My sympathetic nervous system is so messed up with the MS that my body temperature can vary 4 degrees from the right side of my body to the left! Not only that, but when he put a blood pressure cuff around my right ankle and pumped it up to get the pressure. The compression of my nerves in the ankle caused my right foot to spasm (Thankfully not painfully) so that my foot pointed like a ballerina en pointe! After all the testing was done they set me up a another comfy recliner to run the protocols on the machine. After 15 minutes, I was yawning, by the end of the second protocol I was dozing, and at the end of the third they had to wake me up! It was great. I felt so relaxed, like I'd had a deep massage. Obviously my body LIKED having my sympathetic nervous system stimulated. Marybeth told me that if it worked it would make me sleepy. Guess what MB IT WORKED! I will be running two protocols tonight for 40 minutes each. (My husband has already told me he'd wake me up when the signal went off that the first one was done). LOL That's it for today. It's already 6pm here. HUMID as all get out and in the 90's. In a nutshell. So far so good. Blog atcha tomorrow!

Arrived in Texas

We have arrived in Texas! What a day. Getting through security at LAX went remarkably smooth. As I'm someone who always has to go to the "special" security area because of all the equipment with my bilateral cochlear implants, I'm used to an often pretty darn complete patting down. This time they didn't touch me at all. Just the wand. First time ever! I thought, "hey this is off to a great start". We flew Southwest. This was my first experience with Southwest. Did you know there is no such thing as assigned seating on Southwest?! Nope, first come first served. Fortunately, or unfortunately depending on your perspective.....and I choose fortunately :) We were the 4th to board because I'm "special need". So we got bulkhead seating. (Which means no one in front of us a TONS of leg room). Yeehaw! Then...it happened. An unaccompanied, no more than 5 years old, girl was seated directly behind me. Next to her sat a 2 year old and his mother. No biggie. I LIKE kids. Until you spend 2+ hours in the air hearing the 2 year old cry/screech THE ENTIRE TIME and at your back you feel kick, kick, kick, PUSH for 2 hours. ARE YOU KIDDING?!?! Fortunately I just got to the point I turned the volume off both my implants. Ahhhhh blessed SILENCE. Unfortunately, I still had kick, kick, kick, PUSH. At one point Mark was ready to say something, but I was able to talk him out of it. There was no point. The 5 year old wasn't accompanied by an adult and the LAST thing I wanted was an ANGRY unaccompanied 5 year old behind me. Kick, kick, kick, PUSH, I could deal with. The mom couldn't help her two year old was being a......."challenge". Ahhh...beverage service (you know they don't feed you). I ordered a coffee. On other airlines when you sit at the bulk head your tray folds out of the arm of your chair or they bring one that fits on the arm. Not Southwest! No tray AT ALL. So there I am, trying to balance hot coffee, my book and the granola bar they give you. (No peanuts...granola bar....no choice). (Did I tell you they wouldn't let me put my purse under my seat because as the male flight attendant put it, "That space belongs to the passenger behind you".....ummmm both passengers behind Mark and I were children with no carry on's. So, the entire flight my purse was across the aisle 2 rows down while the space remained empty beneath both our seats). However, the BEST part of the flight was at the end......when the female flight attendant SANG TO US OVER THE INTERCOM SYSTEM!!! Believe me when I say when the plane landed we were the FIRST off! LOL. I just can't WAIT to fly Southwest home! Once we landed everything was uneventful. No lost luggage, no snags with the rental car. Perfect. So perfect in fact we decided to stop in San Antonio and see the Alamo. Neither Mark or I had ever been. We were lucky and got parking that was close. So ever though it was HOT it wasn't too much for me. The drive to Corpus Christi took a little over 2 hours. Everything is so GREEN here. Unlike Southern and Central California where because of the drought, everything has been brown for the past few years. So it was a nice drive. Were staying just a few miles away from the clinic, so it shouldn't be a problem getting there. My appointment is at 10 (8 pacific time). When we checked in somehow the topic of why I'm here came up with the desk clerk. He replied that "Whatever that doctor does he must do right, folks come from all over to see him". That actually made me feel even better! Well....even though it's early, 7:45 pacific time, my body is telling me it's done for the day, and I'm smart enough to listen. I'll blog more tomorrow and let you know how the first day of treatment goes!

The Trip begins

Packing up to head to Texas. As soon as I post this I'll be powering down the laptop. Heading to the Valley today to spend the night there, then heading to LAX for an early flight. (Thankfully we having someone coming in to take care of the critters and house sit for us while we're gone. Means I don't have to worry about the "kids" or the house). I won't blog again until I get settled tomorrow evening in the motel. I anticipate that blog will be wit and sarcasm filled as I have NEVER traveled without my fair share of mishaps. (Can you say Waaaaay in appropriate body searches???!?). So, everyone have a great weekend.....blog atcha later!

Tonight...I was an Ostrich

We all deal with the struggles life gives us in our own unique ways. Some avoid issues like an ostrich with their head in the sand. Some bulldoze over them, thinking that shear force of will, will over come any obstacle. Some think, analyzing every angle to come up with a "rational" and "reasonable" way to deal with a situation. Some simply "go with the flow" figuring everything will work out as it will so why bother. Before MS I tended to fall into the "bulldoze" category. No problem couldn't be solved through sheer will and all the effort it required. Defeat wasn't an option. However, like I said, that was BEFORE MS. Before MS sapped all my energy. Now I'm lucky if I have the energy to be an ostrich! My Primary Health Care Physician make a house call this evening. Can you imagine. How awesome is that? She brought over the paperwork I need for the airlines to fly with my Rebif as well as the machine for my treatment in Texas so I can carry it with me and not check it as luggage. (Can you imagine my fit if they lost it?!?!) She sat, we chatted. She was actually here for quite awhile. I was up and down with my cane. Nothing unusual. Then she said to me, "Where is your walker"? Of course, like the ostrich my head immediately went DEEP into the sand and I replied, "In my bedroom". She replied, "Not going to do you much good there". All I could do at that point is nod my head and SIT. Darned if I got up the rest of the time she was here! I know I'm wobbly. I get that way now and then :)~ It's been a rough summer. I've gone from using the cane very intermittently in April to full time cane and part time walker in September. Big change....but....as challenging as this summer has been I learned a lot about ME. My strengths and weaknesses. I learned it's OK, (OK is explained in a previous blog), and part of being OK means that sometimes it's OK to be an ostrich.

Another HUGE Blessing

As you know, I'm heading to Texas to start treatments on Monday. Of course, insurance won't cover any of this. The treatment is 100% covered if you have a chronic pain condition, but not for MS. Even with a MD referral. Here's when God and friends work miracles. When I sent an email out to my friends telling them I was going and about the expense. I also include information about the machine. A few days later I received an email from my friend Deb telling me she found the machine on eBay! I went to eBay a lo and behold there it was! I verified it was the correct machine with Marybeth (my guest blogger) and it was! Opening bid was 375. I had a competing bidder but we still won the auction and saved enough that the difference is covering our airfare and hotel for the week! Praise God and thank you Deb! I would NEVER have thought to look on eBay! The machine is just a few months old. I just received it about 10 minutes ago. (We paid for overnight air shipping as the auction just closed yesterday). Just shows that God DOES provide in times of need and angels aren't just beings with wings (THANKS DEB).

A New Day

Finally! It appears that all the steroid side effects are gone and now the waiting fame begins. Where I wait the 4-6 weeks after steroid treatment to see which of the "new" symptoms and the worsening of the old are permanent, and which will resolve. Yesterday was a frustrating MS day. As I blogged earlier, I am now on Neurontin for the muscle spasticity. For the first week it was a God send. NO spasticity! I can't even begin to describe how wonderful that was. It basically made me almost pain free. Then, a few days ago the spasticity came back. My feet and legs spasmed constantly, but it wasn't painful. Just annoying. Anytime I got bored I could watch the "alien" show beneath my skin. Then, they started getting painful again. The pain increased daily. Finally yesterday while I was driving my entire left leg from hip down spasmed so severely that I had to pull off the road. I was in so much pain and it lasted so long I seriously thought about calling someone to come get me! Finally it subsided and I made the drive home. Had a conversation over the phone with the NP in my doctors office and she added a 4th dose of the Neurontin to my day. Today is day 2 with the 4th dose, so I take 300mg 4 times a day. So, we'll see. I FEEL good. Tired as usual, but good. Dying to get back to work (I know there's got to be a DSM diagnosis for that), and back to my "normal" life which has been on hold since mid May. Hopefully, the treatments I'll start in a few days in Texas will help get me there.

Support...and fitting in

This is going to be an entry that is a little different than my "usual". Today was a good day. Quiet, then busy in the evening. Tonight was the first MS support group meeting in my local community. I live in a rural mountain community and the nearest support group was an hour away. So, having one here is a big deal for us. Unfortunately, there are more than enough of us MSers in our local area to support an support group. (Is that a double negative???). Anyway, I had received several phone calls from folks saying they would attend, a few from folks who couldn't attend this one, but will be there next month. End result: ONE MSer showed up with her mom. Of course, I was a bit disappointed but, you know what? It was a GREAT meeting! It was conducted following the same format as if we had 15 people there, but the difference, besides the obvious, was that I had an opportunity to get to know a fellow MSer. We shared open, honest dialogue and it was absolutely WONDERFUL to talk to someone and say, "I KNOW" and hear the same in return. To know that we were discussing an issue and we both "got it". WOW. To be able to share symptoms and advice on treatments, heat issues and just to say, "ME TOO". It was great. I walked out of that meeting feeling like I belonged. For two hours I was with someone who was just like me. For two hours I was NORMAL. I wasn't the one who walked "different" or who was different because I forgot my words. I fit right in. I can't wait until next month. (We meet the first Wednesday of each month). Want to join us?

It's like boxing.....

One of the things I find the most amazing about MS is how, no matter how long you've had it, it still sucker punches you. That's what happened to me this year. (Especially this summer). I had gone for so long feeling, "lucky". Lucky that I was relatively unaffected by MS. I had a great energy level, didn't have any pain and other than the occasional small "flare-up" (which were usually heat or stress related) some pills, and a shot once a day, MS was merely an inconvenience for the last few years. I didn't even start using a cane "intermittently" until last year. It wasn't until this June that MS really became a main player in my life. In fact, this June it became THE main player and retained the title, until this week. This summer I had I stopped living my life and started living MS. MS was in control. The beginning of my exacerbation's this summer were directly related to an incredibly stressful, emotional situation. 10 days after this situation I was in a full exacerbation. MS sucker punched me, no holds barred. MS then proceeded to beat the tar out of me for almost 3 months. My journey with MS, for the first time, had become a battle. One that at times I wasn't sure I was going to be very successful with. So, I did what I know how to do. I survived. I put my head down, dug my heels in, and did whatever I had to do. Even when it was the LAST thing I wanted to do. (Like that 3rd round of steroids in 2 months). I kept plodding forward. I learned a lot too. Not just about MS and how it's choosing to effect my body, but about ME. (They say you never stop learning). I learned a new way to deal with things and I learned it's OK! (See previous Blogs). I feel I'm finally seeing the light on the other side of the struggle that was this summer. I still have big problems with the right eye d/t the optic neuritis, balance problems and TWF (BIG TIME). I feel like I've gone 9 rounds with MS this summer, with most of them being pinned up against the ropes. If it wasn't for my husband, I have no idea how I would have made it through. I still have challenges ahead. I know that, but for the first time in awhile I feel like I've starting to live my life again instead of the MS. I'm taking baby steps, but at least they are moving in the right direction....forward! Oh...and the hand...much better. Thank goodness for antibiotics!

Previous Post

Thank you Marybeth for your post! You explained things MUCH better than I could! I appreciate your time and effort. I am looking forward to next week and starting the treatment. I'll be taking my lap top to blog about my experience.

Complimentary Treatments for MS

Kim asked me to write about the treatment she is going to try next week, as it is the same treatment that I am using to treat my MS. Although I have had MS since I was about 27, I was only diagnosed in 2003, after a major relapse sent me to the hospital with numbness on my right side, double vision, spasticity and some trouble putting my thoughts into words. After several doctors ran through a list of possible causes, I underwent a brain biopsy to determine if the lesions on my brain were MS or an inoperable brain tumor. Since the lesions were atypical of MS lesions, the only way to know for sure was to do the brain biopsy. Lucky for me I did not have brain tumors. After a couple of years on what we then called the ABC drugs, I decided that I felt better being off the drugs. Since my neurological exams were normal, my neurologist was comfortable with my decision to stay off the drugs. From the time I was initially diagnosed in February of 2003 I have only had two relapses…one in November of 2007; double vision for which I took Prednisone, and the current one right now, which is total numbness on my left side which I am treating with acupuncture and the use of the Dynatron STS machine, the one Kim will be using next week.

The machine as I call it was invented and patented by a podiatrist named Dr. Donald A Rhodes in Corpus Christi, Texas. It is being used to treat diseases that conventional medicine has not had any success in treating. I was skeptical when I first started to talk to Dr. Rhodes about the treatment, as I was in Corpus Christi not for myself, but for my daughter who was in chronic pain from reflex sympathetic dystrophy. Anyway, I was talking with Dr. Rhodes about MS and said that I didn’t think the machine would help me because the myelin sheath cannot regenerate itself; and he said why not? He said that the myelin sheath is very sensitive to oxygen deprivation and that if we could improve my circulation and get my body to make the neuropeptides (nerve chemicals) that it was missing that the myelin sheath could very well repair itself. Let me just say that Dr. Rhodes is not looking to cure everyone, if that is a byproduct of the treatment, that is great, but really what he is trying to do is just improve the quality of a person’s life. Let me stop here and say that his machine is licensed, patented and approved by the FDA for the treatment of chronic pain, neuropathies and circulation. Once a product or treatment is approved by the FDA, it is no longer considered experimental.

So after some testing, I started treatment by putting electrodes on my hands and feet based on the protocols that were right for me and started running the machine twice a day everyday since mid January of this year. I have had several positive results. One is that I no longer have train wreck fatigue. This is the greatest thing that ever happened to me. I am able to go for an hour long walk and still go to work and have a full day. The other bonus is that I am off all of my blood pressure medicine (the machine naturally lowers a persons’ blood pressure) and I am off all of my allergy meds as well.

This has been an unexpected yet delightful change in my life. I feel like a “normal person” again. While I still live with MS and always will, I am drug free, and feeling healthy and most importantly living a full life. This method of treatment (and I am only the 4th MS patient that Dr. Rhodes has treated) is non invasive and painless, imagine that!

I am attaching to the bottom of this, an article that Dr. Rhodes wrote about this treatment. It will give you a general idea of what happens when the machine is used.

Kim- I wish you the best of luck next week and will be praying for positive results for you.

Marybeth


COASTAL BEND CHRONIC PAIN CENTER
5833 Spohn Drive, Suite 401
Corpus Christi, Texas 78414
(361) 992-9432 Fax (361) 992-3978
March 17, 2008

About 14 years ago I began developing a treatment system for previously untreatable diseases. This started as a treatment for a devastating nerve disease which was known as Reflex Sympathetic Dystrophy, at that time. Since then, this disease has been renamed several times but still defies effective treatment by most physicians. However, we have had excellent results utilizing my methodology. The treatment that I invented, developed, and patented is a form of electrical stimulation. In 2000, this methodology was licensed to Dynatronics, Inc. of Salt Lake City Utah. Upon my instructions a modality was created and named the Sympathetic Therapy System (STS) and was FDA approved to treat chronic pain and increase circulation. The treatment is designed to create neuropeptides (nerve chemicals), which control our bodily functions. By creating these neuropeptides, it is possible to increase circulation to various portions of the body and reverse the damage caused by insufficient circulation. The Dynatronics license allows Dynatronics the right of first refusal of subsequent patents. However, due to financial considerations, they have chosen not to pursue any of my subsequent patents. These patents markedly improve the effectiveness of the treatment utilizing magnetic electrodes and allow the treatment of non-painful diseases but are only available in our clinic.

This treatment was found to be effective for alleviating the pain caused by a wide variety of painful diseases including all types of arthritis and neuropathies. In 2001, a clinical study of peripheral neuropathies showed that not only was this treatment effective in decreasing neuropathic pain but that this treatment was able to improve nerve conduction as verified by nerve conduction velocity studies performed by a board certified neurologist. The results of this study were published in the Journal of the American Academy of Pain Management

Shortly thereafter, a local physician with diabetic neuropathies became a patient of mine. As she received treatment for the neuropathies, not only did the pain in her feet disappear but also her blood sugars began decreasing requiring her to decrease her daily insulin. Eventually, she was able to reduce her insulin usage by 80%. A small clinical study was then performed involving participants with diabetes type 2 in conjunction with a number of other physicians in the Corpus Christi area. This study showed that virtually every subjective and objective measurement improved including nerve conduction, bone density, kidney function, and Loss of Protective Sensation. These results were published in the American Diabetes Association publication “Diabetes Care” and in the publication of the Diabetes Technology Association. In addition, the results were presented to the national clinical meeting of the Diabetes Technology in Atlanta, Georgia.

The newest and most exciting improvement is the linking of autonomic nervous system data from the individual patients to the electrical stimulation treatment. This allows the treatment to modulate to the needs of the patient. This is the first time that a physical therapy treatment modulates to the patient rather than the patient modulating to the treatment. This newest incantation of the treatment allowed improvement in patients with Parkinson’s Disease.

Based upon this improvement, a small pilot study of this newest modification of my treatment is currently ongoing in conjunction with Rob Izor, M.D., a neurologist specializing in movement disorder diseases such as Parkinson’s Disease. At the end of the first month, all of the patients in the study had a 25 to 50 percent improvement in their Unified Parkinson’s Disease Rating Scale. At the end of the second month, all of the participants were continuing to improve. This was the subject of several newscasts and will be available in a DVD format, in the near future. This study will continue for a total of six months.

Currently, this treatment is set and altered based upon temperature sensor results with computer analysis. While this is very effective, it requires that the patients be in Corpus Christi, Texas for continual resetting of the treatments. At this time, we are designing a new physical therapy modality, which will be able to reset itself automatically several times per week. This will allow the treatment to continually change in response to an ever-changing patient. This new unit is being designed to allow computer changes so that some of the units can become a “sham units” for double blind clinical studies. This “artificial intelligent” unit will allow other medical practitioners to achieve the excellent results that I have been able to experience with diseases such as CRPS, rheumatoid arthritis, osteoarthritis, chronic back pain, diabetes, Parkinson’s Disease, and Autism. All of these diseases are controlled by the same group of neuropeptides, which decrease circulation.


If you have any questions, please do not hesitate to contact me at our clinic (361) 992-9432.

Thank you for taking the time to read this information.




Donald A. Rhodes, D.P.M., F.A.C.FA.S.

MS Prayer

Multiple Sclerosis, MS, disease, disability.

Canes, walkers, chairs will not diminish my spirit.

Or force me to lose my ability.

To hope, to dream, to live to soar.



Multiple Sclerosis, Disease, Disability, MS

Invokes fear and pain with thoughts of change.

But I refuse to allow profound distress.

To make me feel that I am any less.



Multiple Sclerosis, Disability, MS, Disease.

Something of which I have no control.

So, I pray to God, Please. Please, Please

Help me walk through this Journey with Grace,

Perhaps to stumble, perhaps to fall,

But always to remember You are here through it all.