Thursday, April 30, 2009

Rehab Today

Just finished my YUMMY hospital breakfast (NOT) and am waiting to speak to my case manager to find out the details of time etc. I can expect to transfer to Health South Rehab. Funny, I haven't seen hide nor hair of my case manager since Monday even though I have left several messages for her to come see me. You think it would be a priority to see a patient being discharged to a rehab facility wouldn't you? I'm actually looking forward to getting to rehab. I know it will be a lot of work, but if it helps me regain even a little independence back it will be well worth any work I need to do. It will be interesting to see what adaptive equipment my supposed "Great" insurance will pay for. So far they've even denied the shower chair. Can you imagine? Denying a shower chair for someone in a wheelchair. Then I wonder why I'm not surprised. The great thing is that the Rehab center I'm going to has a specific MS program. I'm going to be talking to them about the machine I use with Dr. Rhodes. I hope they are open minded enough to at least explore the possibility of me being able to use it while I'm there. So, this will be my last blog until I get settled in to Rehab. hanks for all the warm emails of support. Each on has been deeply appreciated. Kim

Tuesday, April 28, 2009

Neuro results:

Fortunately the CT scan was negative for a tumor (Praise God). However, the neurologist thinks that I have developed to new occipital lesions which are what is causing the field of vision problems I developed this time as was as the increasing issues with the left leg. He also stated the obvious that I have been in a pretty consistent state of decline since last June that the CRABS and steroids can't seem to get control of. So, he is keeping me in the hospital through the entire 6 days of infusions and then sending me to a Rehab facility. He also wants me to go back to UCLA for a medication consult and recommendation. His preference is Tysabri, so we'll see what UCLA says. Now the research regarding the Tysabri begins.

Gotta love it

Had the CT and VEP today. Have had some improvement with the vision in the right side and a decrease in the left. Just hanging round waifing fir the Neurologist to show up. It's already 6:55 pm and the later it gets the more unlikely it becomes he's coming in today. That sucks. Tell me I could have a brain tumor, rush the test and then take your time in discussing the results with me. Of course, I all ready know if a tumor ad sown up he would have been in here ASAP. SO I'm pretty sure I can relax about that. Well, I'll blog as I know more!

Hospital Update

I now have optic neuritis in BOTH eyes. I've gained 11 pounds in two days of the IV steroids and feel like crap for lack of a more tactful way to put it. mark spent the night with me in the hospital last night. It was really comforting to have him here. Hopefully the CT scan will be done in the morning hours as they made me NPO and the steroids make me insanely thirsty. Typing has become ia challenge so I may not being doing many further updates today. I'll post again when the vision improves or I have time to keep my face close to the keyboard.

Monday, April 27, 2009


I was admitted to the hospital for the first time yesterday related to an MS exacerbation. In a nut shell I lost the vision in my right eye. I've had two doses of IV steroids and the plan is for a total of 5, then off to a rehab center. (I guess they have evaluated me and come to the collective conclusion that I've deteriorated significantly in the last year. (DUH). I'm actually all for rehab. There focus will be on learning adaptive ways to do the things I struggle with doing, thus regaining more of my Independence. Now that I have my lap top I'll blog about my first MS hospital experience. So far I have to say the Nursing staff, PT, OT and even the physician's have been wonderful. They each have actually LISTENED to what I have to say. Even asked me what MY expectations were. What a concept. One of the relatively new issues I've been not being able to urinate. According the the bladder scan they just did it looks like I've earned a free cath. UGH. I wonder if it will be an in and out or a foley. I hope it's a one time deal and not a precursor of things to come.

Friday, April 24, 2009


Well, my plants didn't arrive today like they were supposed :0( They better arrive tomorrow or they will be dead by the time they arrive Monday. Thankfully, the nursery will replace them and I won't have to fight for reimbursement with UPS. The nursery shipped them 3 day delivery. Looks like UPS decided to make it SIX day delivery instead. Thanks UPS! It was an absolutely beautiful day here today. I didn't get to enjoy most of it as TWF hit me today. I spent most of the day on the couch sleeping. I had when that happens. I always feel like I wasted a perfectly good day. Yet, I know if I had tried to push through it I would have been toast for the rest of the weekend. I'm also having more problems with my left leg. It doesn't want to support my weight and it hurts on top of it. My MD called today to check on me (I think someone ratted me out). I told her the truth (no sense trying to cover up if I've already been ratted me out), and told her I gave into the fatigue and spent the day on the couch. I expect she will be calling again by Monday. I'm so Blessed to have a physician that calls to check on things, let alone one that makes house calls. I wish I could clone her so that everyone had one just like her. She's a rarity in this day and age. Well, I'm off to bed. Hopefully, I'll have a lot more energy tomorrow. If not, I'll curl up with my Kindle and catch up on my reading!

Thursday, April 23, 2009

Beautiful Spring day...

Got my cooling gel packs for my vest in the plants due to be delivered any day...and my energy level good...for me. YEAH SPRING IS HERE! I love the spring. The temperature isn't too warm, the fall bulbs are up, the bees are buzzing and everything seems new. There is nothing more therapeutic than digging in the dirt and watching your projects literally come to life over the next few months and years. The peony I planted last year is up and has about 6 inches of growth. Hopefully, I'll have blooms on it this year. My burning bushes, Lilli's and the lone surviving Gardenia bush all look great. Last years rose bushes all have great new growth as well. So I expect I'll have lot's of fresh flowers for the house this year. My big spring planting project this year is the back yard. Of course, I say "MY" planting project, but in all honesty it will be my husbands. LOL. I'll just point to where I want them. That is the activity I miss the most. The actual planting. I don't have the energy for it. I figure if I can get the new peony in the ground along with the two new rose bushes I'll be doing great. So, I'll sit, enjoy the mild weather and supervise :0) When everything starts blooming I'll post some pictures! Enjoy Spring wherever you are!

Monday, April 20, 2009

Back to my abnormal, "normal" self.

I haven't been posting much this month. A lot going on this month. Dad was so sick at the beginning of the month and I went straight into an exacerbation when he got home from the hospital which, once again, required a round of steroids. I didn't bounce back well either. This round really messed with my moods. They were pretty darn black let me tell you. Fortunately, with the help of hubby I was able to bounce back and am now back to my "normal" self. I found a great web site with MS related items. I ordered a few shirts from them. the web site is:
Under search type in Multiple Sclerosis. They have a great variety of T-shirts, sweat shirts, Hoodies etc. Check it out. Anyway, after 3 or 4 months of not being able to leave the house without either my husband or a friend driving (My Jeep Cherokee became simply too hard for me to get in and out of. It was too high for me to hoist my petard into, not to mention the wheelchair), we decided to do something about it so we traded in the Jeep and bought a new Chrysler Town and Country Van. I can get in and out of it and, because it's so low, I can lift the chair in and out of it as well. Ahhhhh independence!

Thursday, April 09, 2009

Done with opportunuties

Oh I had steroids. The gastritis, insomnia, irritability. I detest the MS even more. I now can't leave my house without help, so I'm housebound. Sucks.
Because of my MS I started looking around to find a way to
turn my house as "green" as I can (I figure it can't
hurt),as well as get healthy. I found Melaleuca. All the
household cleaning products are green. They also sell
vitamins and all kinds of things we use around the house.
Shampoo, toothpast, you name it.I'd like you
to check it out.

Nothing to join unless you want the preferred customer
30-40% discount (including discounts at places like KOHLS,
Target etc). If you want the discount it's only 25.00 for
the first year and 10.00 for each additional year. Check it
out and see what you think. If you'd like to become a
preferred customer let me know. You order directly throught
the company and it's delivered to you home. NO middle man!

I figure I may as well use the blog to pass this kind of information to others as well. If you want more information email me at:

Tuesday, April 07, 2009

One mosr dose.

One more dose of steroids tomorrow than it's done. Then we wait to see what comes back and what new symptoms are permanent. I have the wonderful steroid insomnia with the head ache that feels like Ricky Ricardo is playing his bongo's against my brain. There isn't any amount of ibuprofen that will get rid of that. Add the gastritis and yep, misery. Of course this is the only place I complain, I refuse to make the people in my life listen to me Bit&^ and moan. I save it for you guys. After all, you guys GET IT. You understand exactly how I feel. Right now I'm struggling with watching my independence being chipped away. It as if some mad sculptor has made it his life's purpose to chip away at it until it's gone. Lying at his feet in shattered pieces. It's time to get rid of my jeep. It's too hard for me to get in and out of and impossible for me to life my chair into it. So, exploring my choices I've decided on either a Toyota van or a Ford flex. Any thoughts? I think the van is best and could possibly be converted if necessary. I love the Flex though. So, we;ll see. There's also the matter of what I owe on the Jeep. Right now I'm completely housebound when Mark isn't here. It sucks. I have this beautiful house that is beginning to feel like a beautiful prison. Mark doesn't understand, although he sure tries. I supposed anyone that works see's staying home all the time as a wondrous thing. Personally, I'd love to be working and complaining I'm not home enough. Seems we're never happy are we? Well, last dose of steroids tomorrow. Thankfully I've been alone with no one to bare my teeth at during the worst of the mood swings. By Friday I should be back to my normal personality and not sleep deprived!

3 bells and all is well....

Actually it 3:01. Still wide awake due to the steroids. Nothing much on TV I want to see and reading can't hold my attention. So I decided to blog. My cat (Maggie) is sound asleep at my feet. Content and curled up in a ball. I've always rather envied the life of a spoiled house cat. All she seems to do is eat, sleep and dole out affection as she sees fit. Cats truly run the house. You can't make them do what you want to and you can't stop them from doing what they want. Toonie (Our dog) is also fast asleep. Her snoring fills the family room. Really a rather comforting or annoying sound depending on your perspective. (Fortunately I can't hear her as I would most likely put he snoring in the category of annoying after awhile). The munchies have also kicked in and I am DETERMINED not to allow them to prevail. Every time I go into the kitchen I say a prayer for help grab the water and Crystal Light and get out as fast as I can! LOL Well, I've typed long enough and it's time for me to see if I can get any sleep at all now.

I hate steroids.

Once again I've started IV steroids after two days of Kenalog injections. (I have a GREAT MD. The office's NP came to the house each day ON THE WEEKEND to give my my injection. Unheard of). I've had steroids so many times over the last year I've lost count. Mary, the home health nurse said it was two months to the day since my last infusion started. Ironic. Depressing. I only lasted two months in between doses. This disease certainly isn't for wimps. I'm a tough lady, but nothing wears me down quicker than steroids. Partly because it's so brutal on my body. It makes me feel like crap for lack of a nicer word. The insomnia on the first night isn't so bad. I can catch up on late night TV and see all those stupid infomercials. They also make me HUNGRY. Staying away from the kitchen is an absolute must. I will NOT gain anything but water weight that I can get off by just waiting it out. I've worked too hard the last 3 weeks to lost over 7 pounds and I'm not taking them back. Fortunately Mary got the IV in on the first try, so I don't look like a pin cushion. It;s lucky I don't have anything planned this week until Thursday when hubby comes home. So I can doze during the day when the steroids will let me. I hope it helps my symptoms ease up. I was wobbling so much that my husband said I looked like Katherine Hepburn. I WISH I looked like her! That means I'd be a size six and absolutely stunning. No to mention her classy ability to put folks in their place. Anyway, I am now a weeble again. Only this weeble has fallen twice in two days, and weeble's aren't supposed to fall. So, Back full tine to the walker and chair. Just when I got to the point that I only used the chair for energy conservation and on days that I was really fighting fatique and at risk for falls. I hope the steroids work....once again.

Monday, April 06, 2009

Fundraising for MS Trial, Myelin Repair Foundation

Raise $100K for Our Next Clinical Trial

MRF Principal Investigator Steve Miller, Professor of Biomedical Sciences from Northwestern University, has a promising idea for an MS treatment

In multiple sclerosis, the immune system sees myelin proteins as foreign material and attacks them. Recent research indicates that we may be able to "trick" the immune system into believing that the myelin protein is not a foreign material.

Bringing this idea to a clinical trial will help us determine whether this innovative treatment is safe and effective for MS patients.

MRF needs your help to make this clinical trial a reality.

The total cost is over $2 million. However, through collaborations with other funders, the MRF is providing only $200,000 for the trial over the next two years. ($100,000 for the first year and $100,000 for the second year).

Donate today. Help us reach the goal of $100,000 by June 30.

Remember, your contributions to the clinical trial will be matched 100% thanks to another generous donor -- doubling your impact and bringing us straight to the finish line.

Share the news about the potential of this clinical trial to 10 friends and family and help us spread the word.

Thank you for your continued interest and support.

Scott Johnson
Myelin Repair Foundation
18809 Cox Avenue, Suite 190
Saratoga, CA 95070

Notes: This is an early stage clinical trial being conducted in one research institution. All clinical trials patients have already been selected.

If for some reason the clinical trial does not move forward as planned, you can be assured that 100% of your donation will be used to support other myelin repair research conducted by the MRF.

Sunday, April 05, 2009


I strive not only to share my personal journey with you, but information I have found as well. I received the following email today and thought I would post it here for you to read. I already read the magazine and they have a lot of good information in it regarding MS treatments and studies on a pretty regular basis.


I found your blog while doing some research for the American Academy of Neurology’s free patient-education magazine, Neurology Now. (You may have seen it in your neurologist’s office.)

I wanted to let you know the MS is covered frequently in the magazine, with features on high-profile advocates and stories of every day people coping with the disease. You can either have a complimentary subscription mailed to you, or you can access the articles free online at

Anyway, my dad has MS – so please don’t think my email is purely promotional. I am really proud of our content and I like to let people know it’s available. If you are so inclined to let your readers know about it, or add a link to our home page, I would really appreciate, but at least I hope you will check it out if you are not already a subscriber


Deb Benward

Saturday, April 04, 2009

MS Stikes again....steroids here I come

Woke up yesterday to moderate trembling in my legs and arms. I couldn't even hold a coffee cup without dripping it down the front of me. I've been doing really with managing my MS. Trying to keep my stress level under control, not overdoing etc. Of course, life at times throws you big curves as it did for my family this week. When you have that kind of curve thrown at you it's incredibly stressful (my dad went to the ER with shortness of breat and chest discomfort. He underwent a cardiac cath). No matter how you try to manage your stress MS takes advantage the moment it can. Anyway, the trembling yesterday diminished through out the day. So, I was just going to ignore it. Then this morning I work up to the same trembling, but this time there is also muscle weakness. Joy. Called the doctor to start steroid treatment. Unfortunately, I have an HMO and there is no one to authorize treatment on a Saturday. Fortunately the doctor that manages my care is one in a million. Her Nurse Practitioner is coming to my home to give me an injection of Kenalog so that at least I have some heavy duty steroids on board while we wait until Monday of Tuesday for the IV infusion of the solumedrol. Mean while, no walking. I can't. My legs won't hold me up. One fall this episode is enough. (Already had one when I tried to get out of bed and tidy my room. Ok, I admit, I'm a neat freak). Hopefully, this will past quickly with the steroids and by next weekend I'll be ready to get some flowers planted!

Friday, April 03, 2009

Cooling vest

Been a bit since I posted. Too bloody much going. Most of it my own fault I admit, some not. Did quite a bit of research on cooling vests. Amazing the variety out there. Some relatively inexpensive (below 100.00) some stupidly expensive. They run the gambit in how they work. There are vest that require you to be plugged in and carry a gallon water container with you. (Ummm can anyone explain how that system is REMOTELY practical)??? There are vests that would cause damage to your skin it one of the packs/cells ruptured (WHY would anyone risk that)???? Vest with Velcro closures and vests with zipper closures. Vests that look like bullet proof vests and vest that look like Xray protective vests. Decisions, decisions, decisions. It all comes down to cost and personal preference. OK, lets admit it. It ALL comes down to cost. Fortunately I was able to afford to purchase a vest that had all the features I wanted. It's a zipper front, so I didn't have to worry about Velcro tabs popping open. The gel packs WON'T hurt my skin if they rupture. (I think the reason I preferred that is pretty clear). The vest came in a choice of colors so that I was able to get it in a color that won't show through light colored shirts as I intend to wear mine under my clothes so it's not obvious. (I chose a light tan color vs, blue or black). It is form fitting so it's not as bulky. is the website for the vest I chose. I worked with Sylvia there and she was great. They also send you a vest only after they talk to you about your measurements. While the vest sizing is S, M, L etc. the size they send is based on your height, weight, chest measurements etc. The other sites you place the order on line without talking to anyone. I figure, if I was going to spend that kind of money I wanted to make sure it fit the FIRST time around. (Great customer service was another reason I purchased this particular vest). There are groups that provide cooling vests for free if you meet certain economic criteria. Your insurance MAY cover a vest as well, so don't forget to explore that option. I didn't go the insurance route because all they would cover is the vest where you have to be plugged in AND carry the huge water container. Which means I wouldn't be able to wear it when I need it. (Outdoors and traveling). If you don't have a cooling vest NOW is the time to get one. BEFORE the weather gets hot. We may not have a lot of control over our disease, but heat tolerance is one area that we CAN have a strong influence over. I choose NOT be be a prisoner of my house this summer. I want to be able to get out and garden, go for a picnic with my husband and maybe even fish this year. I want to be able to be as active as I can be given the limitations I have because of the MS. I know wearing the cooling vest will be me an edge over the heat.