Tuesday, June 30, 2009

Just call me "wifey" wanna be

Today started off is it's usual fashion as I stated in my earlier blog. After blogging I got up, dressed and pondered about what to do with my day. I use my scooter even in the house for energy conservation, so I was feeling pretty good. I decided to tackle the laundry. I have someone who comes in and cleans my house and does the laundry for us so Mark doesn't have to to everything on the few days he's actually home.

Anyway, as I said I decided to tackle the laundry. I sorted and started the load of towels. YEAH. I was actually doing something "wifey". (I always loved keeping my house neat and clean). I then came back, tidied up the dining room then relaxed until the washer buzzer went off. Still feeling pretty good I decided to do load two. YEAH, I was still able to be "wifey".

Feeling pretty darn proud of myself, I decided to scooter on into the master bedroom and tidy that up. By the time I was done buzzers were buzzing, so off I went into the laundry room. Folded the towels put the whites into the dryer and then scootered my way to the linen closet.

Nothing makes ME feel better about me than when I can tackle a household chore I haven't been able to do in awhile. While it WAS a challenge getting the clothes in and out of the dryer I DID IT.

After I put the towels away I realized I was feeling a tad tired. So, I sat on my reading chair, covered myself with my beautiful prayer blanket and decided I was going to surf the net. I woke up 2 hours later when the phone rang! Then I moved to the couch for another 2 hour nap with my blanket and cat.......until the phone rang AGAIN!

Uh oh....this means the whites are still in the dryer and the load of colors are still in the wash. Wonder if they will be OK until tomorrow when my caregiver is here???? LOL So much for being "wifey".

Goodbye June

Most folks enjoy the summer. The BBQ's, warm weather, boating, all the family gatherings and playing touch football. I used to be one of them. Not now, no way. I dread the summer. The heat keeps me housebound most of the time. Thank goodness for the cooling vest. At least it gives me a solid 2-4 hours outside depending on how hot it is, and it's been HOT here this June. I'm sorry to see June go, even as hot as it's been. Means July will be coming in with it's usual heat. At least we don't have the humidity some of you have to deal with.

Today is off to a good start. My pain level is manageable (Which is amazing considering last night was Rebif shot night. I ache but I feel as if the truck only hit me once last night and didn't back up and roll over me again).

I just wish I was seeing (literally) an improvement with my vision. I MISS reading! My sister sent me several books for my birthday that I haven't been able to touch. Even using the magnifiers don't help much. When I try to use them longer than about 15 minutes I start getting a headache. So, I'm left with watching TV (YAWN) and zipping around the house in my scooter. (Which I have to admit is kinda cool). The scooter has made a big difference with energy conservation).

Tomorrow PT resumes. (PT short for physical torture). I had a rest last week from PT and MD appointments. They all start up again this week. I'm holding out hope that with each MD visit they will take away a pill or two I'm taking every day. One must have hope!

Stay cool everyone!

Monday, June 29, 2009

The Bow Award

Thank you Ms. ME http://txphoenix.blogspot.com/ for The Bow Award! I'm glad you enjoy my blog. I, as everyone else who blogs, often struggle with a topic or exactly "how" to say something.

So, a year ago, when I started blogging (can you believe it will be a year July 31st?!), I promised myself I would write following ONE simple principle. Keep it honest, even when it was painful. (Heck, ESPECIALLY when it's painful). For me, blogging has been a great therapy. It's helped me put emotions, feelings and frustrations into words. Words that I may not have been able to find any other way. Blogging has also helped me learn a lot. About myself, MS, and the experiences of other MS sufferers and how very different our MS experiences are from one another. An example of this was well written by Tara http://livingdaytodaywithmultiplesclerosis.blogspot.com/ as she wrote about a wedding she attended in which there were several guests there with MS, all effected very differently.

The one thing in common we all seem to have (besides MS) is a fighting spirit. That special something that keeps us going, putting one foot in front of the other (literally or figuratively). Often when it's the very last thing we want to do. I think it takes a very special type of courage to do that. On that note, I'm passing The Bow Award on to all the other MS bloggers out there, who like, me "Keep it honest" and have that very special courage that keeps you going, even when it's the very last thing you want to do!

Sunday, June 28, 2009

Letter to caregivers.

Obviously MS changes your life. The diagnosis shakes you to your core and the disease itself can be kind or cruel depending on it's own perspective. MS, for me, is something that has a life of it's own. No matter what I do, what treatments I take, MS is going to do to my body what MS is going to do. Period.

As MS has attacked my body I have lost more and more of some of the physical abilities I always took for granted. Walking for one, finding words for another. I, like most MSers learned the hard way what my limitations are, and what the consequences I have to deal with, often for days, if I ignore them and push on.

However, one of the things I absolutely refuse to allow MS to take away from me is MY right to choose and make decisions for myself. I'm the one who chooses whether or not to push a limitation, I'm the one who decides what I can and can't do. I may not have much left, but I refuse to allow someone else to make those kinds of decisions for me. The day I start allowing that I may as well crawl into bed and stay there.

I know that when a complete stranger looks at me in my wheelchair, they rarely see ME, they see a handicapped person in a chair. I get that. I understand that. However, I DON'T expect my close friends and family to see a handicapped person when they see me in the chair. I expect them to see ME, KIMBERLY. Not the chair, not a handicapped person. I expect them to treat me the same. Don't make decisions which lead to me being excluded from activities or gatherings because you "think" it may be "too much" for me. That's MY decision to make, and if I decide to push a limit in order to participate in an activity then that's MY decision.

I understand that those who love me want to protect me. They make the decisions "for me" out of love. I appreciate that and truly understand. However, what you have to understand is making decisions for myself is really the ONLY thing I have left. If you take that from me you have reduced me to nothing. It's hurtful and makes me feel like I'm no longer important or part of the family. How could I feel otherwise when there is a family gathering to celebrate a birthday and I wasn't invited because of stairs? Then, I find out about the birthday party through a niece on Facebook? Again, I truly understand the decision was made to protect me, but do you have any idea how hurtful that was? I wouldn't have missed my brothers birthday party for the world. I doesn't matter how many stairs I would have had to climb. I would have done it.

I hope this brings understanding to the friends, family and caregivers not only of MSers but anyone who has physical limitations. We're still US inside. We may not be able to walk or tolerate heat. We may stumble and fall, talk funny now and then and tire easily. However, we still think and feel, love, get angry, cry and wish with every fiber of our being we didn't have MS. SO please, for as long as we have our minds, let US decide for ourselves what we can and can't do.

Saturday, June 27, 2009

Just call me Watermelon Woman!

This is exactly how I feel I look right now. Totally ROUND. No freaking way
will I allow anyone near me with a camera. I figure I'll be off the steroids around Mid August as slow as they are titrating me off. (Decreasing by 10mg every 2 weeks). By then I will have been on steroids for FOUR months straight.
The worst part is that even though I've been on the steroids, I'm still continuing with the exacerbation that started in April. Hence the referral to UCLA for the Tysabri consult. Even though I've had really mixed thoughts about the Tysabri treatment, spending four months on steroids tends to make the decision to do the infusions easier. Anything to stop this exacerbation. Anything to get off the steroids......anything to make this weight come off.
On a positive note.....wait, give me a minute, I know I'll think of one. Ummmm....still thinking.
I know......My husband still loves me....no matter how round I get!

Pills, Pills and more Pills..........

I've been on steroids continuously since April 26th. I think I've tolerated them fairly well. Minimal mood swings and no feeding frenzy's. Of course I've gained a terrible amount of weight that will take me year to get off, if ever. (I've tried not to focus on the weight gain. I can't control it so there is no need to make myself crazy over it).

Between all the new pills I'm swallowing 3-4 times every day and the Rebif (which sucks. Since the exacerbation all the nasty side effects of the Rebif have come back), I think I've been dealing petty well with the steroids. Until last night. I was brushing my teeth, looking in the mirror when I suddenly realized I have that terrible "steroid face". My face is so swollen and puffy. It is WAY beyond fat. I look like someone removed my head and placed a large over ripe cantaloupe in it's place. Perfect. MS so sucks!

Tuesday, June 23, 2009

Another month....

almost gone. In fact the year is almost half over already. I think we tend to get so caught up in day to day living and simple survival (especially when you have a chronic disease) that we forget to stop and actually LIVE. I had a great LIVE evening. My scooter arrived yesterday. It's pretty cool. Has side rear view mirrors, a horn, turn signals even hazard lights. It travels up to 22 miles on a single charge and can go a whopping six miles an hour (too fast for me....so far :) Anyway, I rook "her" for a spin this evening.

One of the things I had missed was taking my dog, Petunia (a.k.a Toonie) for walks. Toonie is an Olde English Bulldogge. The breed is VERY active with LOTS of energy. You don't keep them physically active enough and, as with any bored animal, behavior issues pop up.

So, I decided to take Toonie for a walk. Put her on her retractable leash, threw a bottle of water in the basket and off we went. It was great. I was outside walking my dog! (OK so the dog was doing all the walking but I held the leash)! We had so much fun. She loves to hold part of her leash in her mouth. I think when she does that she thinks she's walking her "human" and not the other way around.

We maintained a pretty good pace around the block. She even ran full speed for about 1/2 a block. We stopped a few times and I gave her water out of the bottle. She was absolutely in her glory. When the round was completed she still looked like she had plenty of energy, so off we went again. I was amazed at how much energy she had. Of course it could have been that she was simply thrilled to be out walking with her mommy. Normally she only gets walks when dad is home and she loves them.

She ran about 2/3 of the second go around. I forced her to slow to a walk to cool down for the last 1/4 of the block. I imagine she'll sleep pretty well tonight. The plan is to get up early in the morning and repeat the walk before it gets too warm. It was 85 here today. I would have had to wear my cooling vest to be out when it's that warm. To avoid that it will be early morning and evening walks only.
The scooter is proving to be a great addition to the family. It's giving me back activities I couldn't do and letting me LIVE area's of my life that were simply passing me by. ANYTHING that does that is awesome! It makes how you feel, how much you hurt, how frustrated you may be or how angry fade when you experience the simple joys that had been taken away. It doesn't take them away. It simply makes you forget about them for a few moments in time.

Saturday, June 20, 2009

Inspired by Herrad

Herrad has the most amazing photographs on her blog. I thought it was past time I shared some of mine. I love photography, always have. My absolutely favorite medium is 35mm B&W. I know, I'm a dinosaur. I've also always loved macro photography. I find it very challenging. I recently decided to enter the "modern" world of photography and invested in a nice digital camera. In addition to all the
"standard goodies" I invested in two macro lenses. As my skill with macro
photography develops I'll add diffusers etc.
These are just a small sampling of some of the flowers we have in our front garden. Above is a "Pope John Paul' Rose.
This is one of our day Lillie's.
One of the reasons I love macro photography is seen below. The close up detail your able to get is amazing.

This is my "Disney Rose" bush. The variety of colors on the bush never ceases to amaze me. I can have a dark pink rose on a stem right next to a peach rose. Everyday I seem to notice a rose of a different color on this bush.

Here is another example of the detail you get using a macro lens. Not only are you able to clearly see the smallest details, but the color is amazing as well.

Tiny flowers that I have in a decorative pot on my outdoor garden table.

This is Petunia, aka "Toonie". Mommies girl. She has a
face that only her Mommy could love, (and she does). Toonie is an Olde English Bulldogge. She is 8 months old and already tops the scale at over 60 pounds! She doesn't have a mean bone in her body. She's a real sweetheart but her size, and her constantly barred teeth makes her more than a tad intimidating.

An old friend came to visit today.......

and I say that most facetiously. My 'ol buddy TWF (Train Wreck Fatigue) popped in unannounced, unexpected and definitely unwanted today. Actually one of the worst bouts of TWF I recall having. I DID manage to get up and get dressed this morning (which I absolutely insist on doing no matter how crappy I may feel).

It all started when I woke up at 1:00 this morning having incredible leg pain. Of course, my pain medication was on the table across the room. I didn't want to wake Mark by turning on the lights and I'm not quite brave enough yet to transfer into the chair in the dark. So, I just laid there and tried to keep myself distracted by following the unfolding evening in Iran on Twitter. (An amazing thing. Information and picture were posted there HOURS before the information was reported or the pictures shown on the news. God Bless those poor people over there. From now on if there is anything going on in the world, forget the TV, I'll be following things in Twitter).

Anyway, Mark woke up about 3 so I was able to get some pain medication on board. I think between trying to fight the pain (I know STUPID, STUPID, STUPID), the fact that it's a bit warm and humid up here and I haven't been feeling the greatest, just invited TWF for a visit and it was a TKO. I was down for the count. I'd wake up, look at the clock and promptly roll over and go back to sleep. I'm sitting up in my recliner now fighting to stay awake. It's very frustrating. From now on, the bottle of pain medication will be kept on my nightstand. No more stupidity of just "trying to get through it".

I just hope TWF goes back from wherever she came from tonight. For me personally, TWF is one of the most frustrating aspects of having MS. The fatigue is amazing. You really can't begin to accurately describe it. The closest I can come is lying in bed, literally dying of thirst and there is a glass of water on the nightstand. However, you can't even reach out for it because your too tired. We won't even talk about stamina. I think I've forgotten what stamina IS. Whatever it is, I know I sure don't have any.

The second most frustrating aspect of MS is PAIN. Bet you thought I'd say lack of mobility. When I was first diagnosed with MS, I considered myself very fortunate that I didn't have any pain associated with it. That all changed about 24 months ago. It started with neuropathy then graduated to spasticity. Now I will wake in the middle of the night with my entire body not only feeling like a semi-truck ran over me, but it backed up and did it again. Add neuropathy and the muscle spasticity and it can be rough. Fortunately, I rarely have all three at the same time. I usually have the neuropathy and the spasticity together. Only the neuropathy is almost constant. I try to avoid taking pain medication unless I absolutely have too. I take so much medication now just trying to keep the spasticity under control, but sometimes I have no choice.

The mobility issue IS very frustrating, but more than frustrating it's just sad. It seems as if another physical limitation presents itself almost daily. For a person who was TOTALLY type A, not being able to do what I want to do, when and how I want to do it is pretty challenging. So, I concentrate on trying to keep a positive attitude about it. Instead of focusing on what I can't do I try and focus on ways to do the same things. Just differently. Not always so easy.

So, that's where my journey with MS has taken me today. I hope your journey today hasn't been as bumpy!

Thursday, June 18, 2009

I detest HMO's and now they are thinking of a Nationalized Plan?????

Went first thing this morning to visit my Primary are Physician. One of the toughest parts about managing life when you have a chronic disease with an HMO are all the MD's you need to see, and the wait to see them. A Physiatrist to manage your rehab program, Opthamologist for the eyes, Neurologist for the MS, Physical Therapist, Occupational Therapist and your poor Primary Care Physician who is supposed to manage it all.

I positively detest HMO's with a passion you can't begin to imagine. Not only as a patient but as an RN. Patients should be able to see whichever provider they wish (not be forced to drive 4 hours each way because UCLA is on the HMO's "preferred Provider list" and nothing else closer is) and MD's should be free to practice medicine and prescribe treatments, referrals and drugs BEST for their patients without all the bureaucratic B.S. that comes along with HMO's.

Now Obama wants us all on a Nationalized HMO program. I don't think I need to elaborate how I feel about that at all, so I won't. Goes back to not wanting to unintentionally offend someone.

So, because I have an HMO, I wait. I wait to see if some bureaucrat agrees with my Neurologist that. 1. I need to be seen at UCLA for Tysabri evaluation. (If they deny it guess what? I don't get the drug). 2. Approval of the motorized wheelchair. If they don't agree with both my Neurologist and my Physiatrist, I don't get one. (Unless we shell out the literally THOUSANDS of dollars they are).

My main job now is NOT to focus on any of this while we wait. As per my Neurologist I'm still exacerbating, I don't need stress to make it worse.

I'm also avoiding the news. Geesh....doesn't anything GOOD happen in the world anymore????

Wednesday, June 17, 2009

"You look better than I thought you would"

were the first words out of my Neurologists mouth today when he saw me. I chose to take it as a compliment and wondered how BAD I must really have been when I had my exacerbation in April. Of course, you know, MD's being MD's, they aren't going to throw you a bone without at least attempting to take it away. I just had to wait. I didn't have to wait long. He began grabbing at the bone with the question, "When did the foot drop start"? (I didn't have it prior to the April exacerbation or while I was in the Hospital for that matter). I explained that it started in rehab, hence the brace etc. He started tugging on the bone when he asked me to take my shoes and socks off, and he positively wrestled the bone away when he told me to close my eyes and tell him when I could feel him touch my feet. I had no problem feeling him touch my right foot. I kept WAITING for him to touch my left foot ANYWHERE. The longer I waited to worse I knew it really was. I've never met an MD that has enough of a sense of humor to make a patient wait for the touch and then yell "Gottcha, I haven't touched you yet" when you say you didn't feel anything. Sure enough, turns out my left leg/foot is worse than even I knew. I have zero....nada feeling in it (unless of course you count those horrendous bouts of spascity I have. Then the bloody foot has PLENTY of freaking feeling). End result. Request to insurance company for electric wheelchair and UCLA consult for Tysabri. SO, all in all a mixed review. However, getting back to his statement of "You look better than I thought you would". I really wanted to say, "Damn straight I do, and don't ever count me down and out again. I will NOT be defeated by this damn disease, I will continue to push myself harder than I should and risk my husbands' wrath (sorry honey) as well as the worry my friends before I give up. BECAUSE THAT'S WHO I AM AND WHAT I'M MADE OUT OF". Of course, I didn't I nodded my head at all the appropriate points shook his hand and made my follow-up appointment for three weeks.

Tuesday, June 16, 2009

Dirucotide Clinical trial. Potential Drug for Secondary Progressive MS

I alwys try to post any information that I either come across or is sent to me regarding any clinical trials related to potential new or existing MS drugs.

I recently received an email regarding a Phase III trial for Dirucotide.

For those who just want the highlights here they are (Remember the opinions are not my own, but those of BioMS www.biomsmedical.com and Eli Lilly):

1) This treatment actually delays disease progression (the first MS treatment to do so), and doesn't just treat symptoms.
2) It's the only treatment in trials specifically designed for SPMS patients - an entire subgroup of MS patients with NO treatment available to them (besides Novantrone, which elicits awful side effects and is a cancer drug.)
3) Dirucotide has no known side effects.

Frequently Asked Questions About
Dirucotide and the MAESTRO-03 Clinical Trial

What is MAESTRO-03?

MAESTRO-03 is a double-blind, placebo-controlled Phase III clinical study that is evaluating the efficacy and safety of a proprietary drug called dirucotide. Researchers hope that dirucotide could become a leading safe and effective treatment in delaying disease progression for secondary progressive multiple sclerosis (SPMS). MAESTRO-03 is evaluating the only novel agent in Phase III clinical trials anywhere in the world for SPMS.

What is SPMS?

SPMS is an advanced and especially debilitating form of MS characterized by an irreversible decline in both neurological and physical function. Of the estimated 400,000 Americans and 2.5 million people worldwide who have MS, approximately 40 – 45 percent have SPMS.

While there are numerous treatments available for MS, there currently is a lack of safe, convenient and effective drugs that are specifically indicated for the treatment of SPMS.

What is dirucotide and why is it viewed as a potential treatment for SPMS?

Dirucotide is a synthetic replica of the molecular site on Myelin Basic Protein (MBP) that is a dominant site of immune attack in MS patients with immune response genes DR2 or DR4, which are found in 65 to 75 percent of all MS patients. Periodic high dose intravenous administration of this synthetic peptide is believed to induce and maintain immune system tolerance to this normal nerve component. It is not expected to affect immune system reactions to substances unrelated to the injected peptide.

How has dirucotide performed in previous clinical trials?

In a study published in the European Journal of Neurology in August 2006, dirucotide showed a five-year delay in median time to disease progression in a subgroup of MS patients who have immune response genes HLA-DR2 and/or HLA-DR4. Dirucotide has been administered to MS patients in clinical trials for more than 14 years with more than 1000 combined patient years of treatment experience. Ongoing follow-up confirms that the side-effect profile is favorable.

How will MAESTRO-03 evaluate dirucotide’s impact on disease progression?

Patients enrolled in MAESTRO-03 are administered either dirucotide or placebo intravenously every six months for a period of two years.

Efficacy will be defined as a statistically and clinically significant increase in the time to progression of the disease, as measured by the Expanded Disability Status Scale (EDSS). The EDSS is a method for measuring different levels and types of disability caused by MS. The entire study period, including pre-treatment and possible follow-up visits, could be up to 44 months.

How many patients are participating in MAESTRO-03?

The study has enrolled approximately 510 male or female patients, ages 18-65, at more than 65 sites throughout the United States. Patients have a documented history of SPMS and have tested positive for immune response genes HLA DR2 or DR4. In addition, subjects have had an absence of relapse in the three months prior to their baseline visit, and have an EDSS score in the range of 3.0 - 6.5.

Are there any other studies underway for dirucotide?

An additional Phase III clinical trial evaluating dirucotide as a potential new treatment for SPMS – MAESTRO-01 – is currently underway and fully enrolled with 611 patients in Canada and Europe.

Who is developing dirucotide?

Dirucotide was discovered by two research scientists at the University of Alberta in Edmonton, Canada. The drug has been exclusively licensed by BioMS Medical Corp., a Canadian-based biotechnology company listed on the Toronto Stock Exchange (TSX: MS).

On December 17, 2007, Eli Lilly and Company (NYSE:LLY) and BioMS Medical announced a licensing and development agreement between the two companies granting Lilly exclusive worldwide rights to dirucotide. Under the terms of the agreement Lilly and BioMS Medical will collaborate on the development of dirucotide and will also share in certain development costs with Lilly being responsible for future R&D, manufacturing and marketing activities. BioMS Medical continues to oversee the current clinical trials for dirucotide.

I'll post more information as I am made aware. :)

As Paul Harvey used to say, "And now the rest of the story"

As you all know I went through a terrible exacerbation starting April 26th. (I don't think I'll ever forget that date). I ended up hospitalized, transferred from our local hospital to a hospital in Bakersfield and then into a Rehab facility. I'm still going through outpatient PT and struggling. I 0ften don't know which causes me the most frustration: Not being able to understand folks (especially instructions) due to my lack of hearing, my back pain, or all the symptoms from the MS itself. I just focus on doing the best I can with what I have to work with. I feel like I'm hoisting my own petard up, and as we all know that doesn't work for long. I know my butt is simply too big for my arm to hold it up for very long.

Anyway, while the majority of my vision has returned I'm still having A LOT of trouble with my near vision. Reading is exhausting and even typing is a real challenge. Hence one of the reason's I'm not blogging as much.

I went to see my Opthomologist last Friday. I REALLY like him. He's got a great bedside manner, yet doesn't pull any punches. Which, is what I want and NEED. Someone who WILL be totally honest but wraps the fist in velvet as it's swung towards you. He says I still have active optic neuritis in the right eye (keep in mind I'm still on 40mg of Prednisolone every day). He also said that the reason that I am having such a hard time with my near vision is that he muscles that help focus the near vision are paralyzed. He compared it to a zoom camera lens. The lens zooms out great, but when it comes to retracting it can't. Basically, there is nothing he can do. We have to wait and see what healing time does, and no, a change in glasses won't help. Thankfully I can se with my glasses anything further out than about 10 inches so driving isn't a problem.

No wonder I'm angry. I can't hear, now I've lost part of my vision and I'm losing my mobility. Yeah haw. Thankfully, I'm over the feeling sorry for myself stage. I'm just good and pissed off now. Fortunately, I have the type of personality that when I'm pissed, it just makes me more determined to beat whatever the challenge is. That, and read Job AGAIN.
I have an appointment with my Neurologist tomorrow. I'll let you know how that goes. Until then...be well!

Monday, June 15, 2009

NOT good fit

I find myself pretty frequently of late, not blogging because I'm too darn angry.
Goes back to the lessons learned of never speaking or typing when you could inadvertently say something that could remotely hurt someone else. Then, today I thought, "What the hell...so here goes".
This all started a week ago last Friday. Remember, I was trying to find someone to talk to. Everything, the hearing, the MS and not being able to work had just got to be too much. So, I called my insurance company, got a list of names and made an appointment with Dr. M.
Mark and I drove the hour for my appointment and noted something as I was waiting to be seen. Every time a patient was called back to see one of the MD's, they were back out in about 10 minutes TOPS. Soon, it was my name that was called. I wheeled myself after the person who called my name (the same person I may add who didn't even bother to hold the door open for the person in the WHEELCHAIR that was following her), and realized that this person WAS Dr. M. (Yep, I could tell this was going to be the beginning of a truly wonderful relationship).
Dr. M. then spent 10 minutes asking me the usual questions. Health history, do I want to hurt myself, am I hearing voices (she/he asked the deaf person, but I digress), yada, yada, yada. At the end of her/his question and answer session she/he put down his/her pen and asked, "So, what do you want from me"? I responded honestly, "I've lost my hearing, gone from dancing at my wedding 14 months ago to a wheelchair, I fell at work, hurt my back and can't work, my sense of self worth is crap and I need someone to help me develop some coping skills". I about fell out of my wheelchair when she/he responded, "I don't do counseling, you'll have to find someone else for that". She/he then whipped out the good 'ol prescription pad and said, "I'll give you something to help you sleep and an antidepressant. I'll see you again in two weeks". Of course for the whopping 15 minutes I spent with Dr. M the receptionist collected my $15.00 co-payment on the way out.
I tracked my husband down (he was outside waiting for me expecting the appointment to take an hour). Needless to say he was surprised to see me so quickly. When he asked how it went, all I could say was, "It wasn't a good fit".
So, the search continues.
And the rest of the story will continue tomorrow. I'll share last Friday's visit with the Opthomologist.......HE was great...it's the MS that continues to be ugly.

Saturday, June 13, 2009

When life gives you lemons......

Thank You Tara at Living Day to Day with Multiple Sclerosis for giving me this award. Tara does a great job with her blog. I'm especially enjoying the results of all the polls she has recently been conducting. Amazing to see how similar we all really are with our MS symptoms.

Here are the guidelines for this award (and the HARD part). Post it on your blog. Did that. Nominate others with positive thinking/attitudes. Post links to their sites and notify them.

There are so many blogs I follow on a daily basis. Each for it's own special reason.

Some, I can always count on to make me laugh no matter how bad a day I'm having: Blindbeard's Multiple Sclerosis Blog No matter how bad she's feeling or what animal has kept her up all night, she somehow always seems to find the humor in each situation. When she can't find the humor, her sharp wit creates it for her.

Another blog I follow is Herrads' Access denied-living with multiple sclerosis I've learned a lot from Herrad. Most of all how differently MS patients are treated there vs. the US. I've especially come to enjoy Herrads' pictures and the stories they tell of her life. A picture truly is worth a thousand words.

Then there is Webster halt stop forget relax She always posts with such honesty. No pretense. (It is what it is...although I believe I said that first last July)! :0)~ She is also so supportive when it comes to rallying around others who are experiencing a rough time.

A recent addition to my regular reading list is Jeff at Learning to live with Multiple Sclerosis Jeff was diagnosed with MS in January of this year and started blogging about his experience shortly thereafter. He is very honest about his experience through through process and doesn't attempt to hide the stark fear he (as we all have), often felt.

Then of course there is http://txphoenix.blogspot.com/ (MS). Sorry couldn't get your link to highlight. I think her blog was actually one of the first, if not THE first I stumbled upon. I have a tremendous amount of personal respect for her. Even hurricane Ike couldn't take away her positive mindset. (She also recommended the "Terminator" to me which has been a HUGE lifesaver already this summer).

I could go on and on. I don't think there is a blogger I follow that doesn't deserve mention here. You ALL do. Unfortunately, my fingers aren't cooperating enough to type any longer!

Thursday, June 11, 2009

For Nicole

I went online to catch up on every one's blogs this morning. There is absolutely nothing that I could possibly say today that is more important than Sherry, and the loss yesterday, of her beloved Nicole. My own Mother's heart cries along with hers.

Monday, June 08, 2009

Kind of a first........

Last night I had a first time experience. Kind of. It wasn't the first time I had cooked. However, it WAS the first time I had cooked a meal from the chair. I chose Beef Stroganoff. I mean why pick something simple right? I just had my husband stand by just in case I needed help (which I did with draining the pasta).

I am pleased to report that everything went well. The meal according to my husband, was wonderful (I know he misses my cooking). No disaster occurred. It WAS a bit challenging to see inside the pot boiling the pasta, so I had to have help with that.

Beyond how the meal tasted, being able to prepare the meal boosted my self confidence and self esteem better than anything else has in awhile. Cooking, such as simple thing that I love and took for granted I'd always be able to do. I showed myself (and my husband) I CAN still cook, but for now won't attempt the task without either him or someone else here. (So it's microwave food for awhile).

I have to admit to being so pleased with myself. It totally wiped me out, but it was so worth it!

Tomorrow is PT (UGH) and an appointment with my physiatrist. I know we're going to be talking about electric wheelchairs. I'm hoping he'll take me off of some of the medication I'm on. We'll see.

So everyone have a great evening!

Blog at you all tomorrow!

Saturday, June 06, 2009

A special Gift

What absolutely unbelievable weather we are having here. The high was only in the mid 50's, gray, overcast, windy and just plain miserable. I think someone forgot to tell mother nature that it's JUNE.

I had the most beautiful surprise today. I received a package in the mail from my sister in Missouri. It was my birthday gift. There were an assortment of books, that I plan to hit as soon as the opthomologist fixes my eyes next week, and a quilt.

This was no ordinary quilt. This quilt was hand made and part of the front of the quilt was a beautiful print fabric that has the "Footprints" poem on it across a large beach scene. Scattered across the front of the quit are dozens of thick pieces of thread. Each pair of thread is knotted. Some have more than one knot. The pair of thread are about 4-6 inches long.

In the bottom of the box there was a piece of paper that explained the quilt. The quilt was made for me by the ladies of The Prayers and Squares: The Prayer Quilt Ministry of the First Christian Church in Kimberling City Missouri.

Each quit apparently is made per a special request for someone and my sister, Jennifer, requested they made one for me. As each knot is tied, a silent prayer is said for someone in special need, who then receives the finished quilt. My sister told them about me, My MS and my situation. Per this paper she asked them to pray that I have:

Patience with myself
Be free from pain and discomfort

This paper further explains that as a friend, relative, Doctor, nurse or visitor wishes to pray for me he or she may tie another knot over one already made, giving me a more visible sign of God's Love and Comfort.

The letter says more, but I'll stop there. I have to say I don't think I have ever received a birthday gift that has meant more to me than this one. It brought me to tears as I read the letter and I cried again as I called to thank my sister. I told her it's rare one thanks someone for MAKING them cry and we laughed together. I am truly Blessed.

Friday, June 05, 2009

It was a GOOD year

Today was a pretty busy day. Appointments in Bakersfield took up the entire day. At one point while I was sitting in yet another waiting room (what IS it about MD's not having any decent magazines in their waiting rooms? Is that part of the oath they take??), I started thinking. (which usually leads to a blog idea). Today just happened to be my 47th birthday. Surprisingly I had no fleeting feelings of being "old" and no fears of getting older. MS showed me what real fear is, and it has nothing to do with getting older.

So, as I sat there in the waiting room I started thinking about everything that has happened over the last year. WHAT A YEAR! In spite if it all, I have to say it WAS a good year. True MS kicked my ass. BIG TIME. However, it was the unending support of my husband, family, friends and fellow bloggers that helped me get back up every single time that MS whomped on me. I may have been battered and bloody, but it was everyone's support that got me back on my feet. (Even if it meant those feet landed on the foot rest of a wheelchair and getting up was the LAST thing I wanted to do). With love and support like that....the year couldn't have been anything but good.

Thursday, June 04, 2009

Attitudes, Faith and Unnecessary Roughness

******I discuss God and faith in this blog. If you are offended by those topics don't read this post.******

I haven't posted in a few days for a few reasons (isn't that witty). First, my vision (near) sucks. My far vision is fine. Anything further away than about a 10 inches....clear as a bell with my glasses. Anything closer is so blurry it literally makes my eyes cross. Not a good thing. Crossed eyes cause nausea. Yuck. Needless to say typing is a challenge, hence one reason for the lapse in the blog. Thank goodness I see my opthomologist next week.

The second. My attitude. It too sucks. I learned years ago it's always better to be silent when your attitude sucks. Otherwise 1. You'll say something that will get yourself in trouble or 2. You'll say something that will offend/hurt someone. Then you have to grovel for forgiveness. With my current attitude, groveling isn't likely to occur anytime soon.

Why does my attitude suck? Because right now life does. It's been beating the hell out of me since last June and I'm battered and bloody. Like a boxer on the ropes trying to hang on but feeling his grips slipping. Unlike a boxer who at least is fighting someone in his weight class, MS clearly isn't in mine.

I have fought MS so hard this past year. I've done everything I was supposed to do, yet nothing made a difference. Not only have I fought MS, but I've fought deafness as well. A double whammy. Either of them individually would be a heck of a challenge. Together they are like Godzilla and I'm running, trying to stay one step ahead of them squishing me.

My husband is so incredibly supportive. Yet, even he can only support so long until his own well runs dry. Right now I think he could use a vacation from ME and all the challenges that come with me. Yet, he would be so offended if I even suggested it. So, I don't.

I have always been a woman of strong faith. I've always looked for the blessing in everything and focused on that when times are tough. My favorite chapter of the bible is Job. An unusual choice I know. Everyone says we should all have the "patience" of Job. Job wasn't patient, he was FAITHFUL. No matter what happened he never lost his faith. I've always strived to be that faithful. That no matter what life brought I always knew the one thing that I could cling to was my faith. That God was always there.

Now, I find myself tired, beat up and while still faithful I find myself asking the question, "When is enough....enough". When will I get a break? I haven't even had enough time between exacerbation's over the last year to process everything that's gone on. Going from dancing at your wedding to being wheelchair dependent in ONE year is a bit of a challenge I'd say. I'd think anyone would need a time out to process and adjust. MS hasn't allowed me that time.

I wish it was as simple as a referee throwing the yellow flag, calling a penalty against MS for unnecessary roughness and me calling for a time out with MS having no choice but to comply. (Does it show I'm a football fan)? Unfortunately, that's not going to happen.

I KNOW I am blessed in so many ways. I have a husband who is supportive, loving and absolutely steadfast. I have family and friends who's support is unending. I KNOW God is with me. So many people going through the exact same challenge don't have half of the support I do. Some don't have any at all. Some don't even have FAITH. As hard as I'm struggling on an emotional level right now, I couldn't imagine even trying to fight my deafness and MS without Faith. No way. But, when is enough .....enough?

Wednesday, June 03, 2009

Formatting my bloody blog......

If this is totally messed up it's Webster's fault...:0)~ If it works... It was Webster's pure genius that get's all the credit. As you all know I've been having a real tough time with formatting paragraphs in my posts.

As I tend to ramble on, especially when I get on my soap box or the blog takes on a life of it's own, it makes it hard for some of you to follow. Heck, it's hard for ME to follow! So, I received an email from Webster talking me through a step to try, so here goes. Short, sweet and to the point.

Hopefully it will work. With spell check complete and my fingers crossed I will press post and hope I see paragraphs!

Tuesday, June 02, 2009


No one ever said that life was fair. I've never been the type of person to say "Why me", I'm the one that say "Why NOT me"? I try not to take all my frustration out on my husband. None of this is his fault and he has been nothing short of supportive and amazing, especially considering everything MS has done to me over the last year. I've had more doses of steroids than a locker room full of professional baseball players and take more pills on a daily basis than a Hollywood star addicted to Vicodin. I no longer walk, but roll around the house usually with Maggie (our cat) sitting royally on my lap as if I am her own personal taxi service. Ever since I came home from Rehab, Maggie simply will not let me out of her site. I think she's afraid I'm going to leave again. I think the dog could care less if I'm around. She's loyal to whoever feeds and walks her, which is Mark when he's home. I got a break from rehab this week and the break has been a welcome one. I can't believe the fatigue I'm fighting. Fatigue has always been one of my MS issues,, but not like this. I can, ad have, fallen asleep when I sit it a chair to watch TV. (Or blog for that matter). So, this degree of fatigue is new as is the complete disappearance of my stamina. The act of getting out of bed and getting dressed takes every bit of stamina I have. Heck, after that I'm ready for bed again! So, in an effort to manage both I'm going to sleep later and turn in earlier. See if that helps with either. As I find myself now fighting to stay awake as I type, I think it's time to just give in and turn in for the night. ZZZZZZZZ