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".
Tuesday, June 30, 2009
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!
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!
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.
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!
Subscribe to:
Posts (Atom)