Saturday, February 28, 2009

Strength and other MS blogs

Today was a day that got better as it progressed. Physically I'm feeling better as the pain that resulted from the procedures is better. My knee is still swollen, but instead of being the size of a melon it's now the size of a grapefruit. My pelvis may be slightly better, but still has a long way to go. Thank God for Vicodin. It doesn't take the pain away, just makes it bearable. It's frustrating when you can't sit, stand or even lay down without pain. As long as I lie on my right side I do fairly well. Constant pain tends to make you forget everything else that's going on in your life. The good and the bad. Fortunately, the MS is behaving itself and other than my "normal" MS weakness etc. no new symptoms have popped up. In fact, for the first time in awhile MS is not to focal point of all my concerns. Now I can concentrate on everything else going on in my life. Like getting my knee and pelvis fixed. This may sound strange, but as stressful as our lives have been over the past 9 months with my injuries, MS exacerbation's and other things going on, Mark and I have not only managed to keep our marriage intact, but it's even stronger. That's pretty amazing considering this all started 6 weeks after we got married last April. Just shows that when you are truly committed to one another a marriage can survive whatever challenge is thrown at it. As I said in my last blog entry: I'm focusing on all my blessings. It's not always easy to do. There have been many times over the last year when I really wanted to give up and stop fighting the many challenges that were before me. Things were overwhelming and it seemed like I was being attacked from all sides. Even my own body was waging a war against me. Several friends have asked me how I continue on. How I stay strong. I know I couldn't stay strong without 5 things: My faith, my husband, my family, my friends and my fellow bloggers. I rarely mention other bloggers, even though I have links to several of their blogs on mine. I read their blogs daily. The common thread I see in all the blogs is the internal strength each of these individuals have. They have no idea how each one of them has touched my life and helped me cope when things seemed pretty bleak. Reading about their struggles reminded me I wasn't alone in my fight with MS. They made me laugh and gave me a new perspective, and continue to do so. If you haven't clicked on the links to the other blogs on my blog, please do so. Let them share their personal journeys with MS with you.

Friday, February 27, 2009


As I lie here is bed recovering from two not so pleasant procedures in two days (not to mention the freaking drives) it's hard to keep frustration at bay. I hurt and I know there is more yet to come. I wish life would just be NICE for awhile. I'm focusing on counting my blessings. I can never give enough thanks for a husband who is absolutely supportive and behind me 100%. Yesterday we were in Huntington Beach for one procedure and in Murietta today for the second. (The shortest drive was H.B. 170 miles EACH way from the house). He doesn't complain and works hard to take the best care of me as he can when I'm in pain. I have one more painful test coming up (an arthrogram of my pelvis. Today's test was an arthrogram of my knee and yesterday's was a direct injection into my left ileosacral joint in my pelvis). I think more painful than the tests is the pain AFTERWARDS. I was in incredible pain last night. Now my pain level is back to what it was before the injection yesterday, which means I can't sit, lie on my left side or back. However, I don't want to cry with the pain like last night! Now the knee is the big source of pain this evening. As long as I keep my left leg completely immobile it's OK. The slightest movement kills me though. Instead of a knee I have a cantaloupe. Geesh. So this week, the MS is NOT to focus of our lives (for a change). However, I'm very aware that stress could cause an exacerbation, so I'm working on being "Zen". Zen. My family and friends will laugh their collective butts off over that one. So, I'll just lay here, take my pain meds, watch HGTV (I am soooo hooked on that channel) and count my blessings!

Tuesday, February 24, 2009

Blasted tile

I came down to the valley with Mark this week. I have MD appointments Thursday and Friday and while he would have made the drive back to the mountain to pick me up, I really wanted to come down and spend the extra time with him. While at times I enjoy my quiet time when he's gone, it gets old. We both need the extra time together and this helped provide it. I may actually make it a regular part of my routine to come down with him. Nothing much to report withe the MS. It's like a plane right now circling the airport and holding onto a steady pattern. I was feeling pretty good yesterday, so of course, I over did. No surprise there to those that know me. We want to re tile the kitchen floor in the condo, so I decided I would do my part in tearing up of the floor while Mark was at the office. I figured since I could sit on my butt and do it, it would be no big deal. WRONG. There are actually two layers of tile. UGH. Part of the pounding was actually therapeutic. Nothing like pounding the hell out of something to relieve stress! :0) Three hours of pounding and I managed to remove 9 tiles. (18 if you count the second layer). Something tells me I'll enjoy putting down the new tile a lot more then tearing up the old. So, anyway I over did. So today I'm taking it easy. Not that I really have any choice. I'm pooped. However, it is what it is, so I'm just going to enjoy the couch time today. If I don't get back to the tile, I guess that just means I'll have to come back down next week! :0)

Sunday, February 22, 2009

Oh happy day.....

NOT. I just finished a round of IV steroids a week ago and am afraid I'm heading towards another. I haven't had such trouble with my hands in months. They just insist on not working. They simply won't do what I tell them to do. I'm back to drinking out of plastic cups, yeehaw. My left leg doesn't want to work and for the first time in months I had terrible spasms in my right foot and thigh. Perfect. Just freaking perfect. If I call the MD it's a free ticket to steroids. If I don't call and everything gets worse, then I get the steroids and yet another lecture. I think I'll try and wait all this out and risk the lecture. Otherwise life is great. We found a great contractor that has started working on upgrading some of the things we wanted done to the house. We now have a beautiful mahogany front door, he ran a drainage system in the back yard, ( the drainage system sucked and our backyard was a muddy lake for DAYS every time it rained or snowed). He's very creative. He ran the drainage system out through the front yard. He then spent several days building a rambling stream of rocks in the front yard so the water will run over them. He even found rocks that match the Mediterranean style of the house. The next project is sprinklers in the back yard and sod. Then building a gazebo and porch in the back yard. By the end of the summer the outside of the house should be exactly what we want. Meanwhile Mark and I will be working on some tile projects both at the house and condo. We took a tile class at Home Depot. I was amazed at how easy tile is to lay. The hardest part is picking the tile! Then, once you take the time to find the center of the room, that's where the first tile goes. From there it's just time consuming. Now I understand why the labor charges are so high with tiling! I just hope I'll be able to help more then, than I would be now. Right now the pain I have in my pelvis prevents me from doing a lot of things I want to. I finally see a pain specialist on Thursday. While the machine has really helped and I am dedicated to continuing with it, I need the help of the pain specialist before I have the arthrogram of my pelvis. They are doing the arthrogram of the knee on Friday. Once step at a time. This is where stress management is vital. I refuse to allow the orthopedic problems cause the MS the flareup. I'm really working on just "going with the flow". I'm using the wheelchair more than I was a month ago, but I've learned this is all cyclical. This months time in the chair may be time spent out of it next month. Positive thinking. Lot's of prayer..and the support of all my family and friends is what keeps me going.

Tuesday, February 17, 2009

One day at a time

Usually, when I start to blog I don't have a fixed topic in mind. Not unless I've stumbled upon something interesting on the internet or am struggling, more than usual, with the MS. I'm just resurfacing after yet another exacerbation and round of IV steroids. Compared to what I felt like before, during and immediately after the steroids the way I feel right now, MS wise, is nothing to complain about. Besides, complaining won't change anything anyway. MS is something that I've simply had to accept. The fatigue will come and go like waves on the beach, (Hey, that was almost poetic), nothing I do will change that. Optic Neuritis will visit like an unwanted guest and stay as long as it chooses. The only weapon I have against O.N. is steroids. YUCK. Fortunately, I am no longer having the major side effects on the Rebif. I think it may have simply been a battle of body over medication. The body stuck with the medication long enough for the side effects to simply give up and go away. LOL. At least I don't have to dread shot night anymore. That alone is a huge improvement. I'm taking things one day at a time. With the MS and life in general. MS sucks and life isn't fair. Especially when on top of MS life throws you other curves as well. I have to remember , "It is what it is" and try not to fight so hard against thing over which I have no control. THAT'S the real issue. The fact that I have zero control. For a type A person that's almost a fate worse than MS.....almost.

Saturday, February 14, 2009

Laughter IS the best medicine

It's been a few days since. I posted, and they have been busy one's. Filled with driving long distances for a doctors appointment (136 miles EACH way) and returning trying to beat the weather. The steroid effects are all gone now. Except of course the water weight which will take months and the increase hair growth in unwanted places that I'm stuck with. . My left knee and pelvis hurt like the blazes (unrelated to the MS) and my stress level is way up (also unrelated to the MS) so I feel I'm walking a balancing act with stress and exacerbation onsets. I'm trying to focus on the positive (my husband, family and friends), those who are really trying to help me (hubby, family, friends, physicians and professional advocates) and those trying to make me laugh (my critters). If I don't focus on the positive I'll be lost. So, yesterday I wheeled myself outside and watched my husband and my crazy dog romp in the falling snow. Petunia or "Toonie" as she is affectionately called is now 4 months old and 40+ pounds of SOLID muscle. She is also a total goofball. She's great company for me and keeps me laughing. Which is probably the best therapy for my MS. It's hard to feel sorry for yourself when your laughing so hard your afraid your going to pee your pants. (Although with MSers that can be a reality even without laughter being involved! LOL). I've also started crafting again. I've been making cards for family. While it may not always be easy when my hands are shaky, thus it takes a lot longer, it keeps my mind busy and it's good or my soul. Makes me feel productive and again, gives me something else to concentrate on. I suggest EVERYONE find a hobby they can do. It's good for the heart and good for the mind.

Tuesday, February 10, 2009

Steroid recovery

What a day. My body decided it needed some serious post steroid recovery time and shut me down. I've slept all day. I got up this morning around 8:30 which is pretty late for me. Normally I'm up by 6. I managed to stay up until 11 then napped till 4:30! Thankfully, I've learned not to fight my body and simply gave in to it. I'm still tired and could easily go back to bed for more sleep. Just goes to show how hard the steroid treatments are on my body. Hopefully, after a good nights sleep tonight I'll have some of my energy back. Right now I feel completely drained and VERY glad I don't have anything to do this evening. So continues the roller coaster of MS. I feel like I just rode out a very big dip and am catching my breath. Hopefully the hill before the next dip take a VERY long time to climb!

Monday, February 09, 2009

Steroids done.....

The steroid run is complete. Thank God. I once again experienced the usual heartburn from hell. Although with the Prilosec I only suffered through it for about 36 hours this time. No less painful, but a much shorter duration. My vision is a bit better. I think. Although it's going to be a bit of time before I really notice an improvement. I still can't read on my kindle or the newspaper. Thank goodness the keyboard letters on the laptop are big enough to see clearly! I refused to allow myself to be pulled into a "funk" over this exacerbation. It's been 6 months since the last one, so I'm hoping I won't have another for awhile. I have no control over when the exacerbations happen and my job is to keep my stress level down in order not to make it worse. I think I managed the stress pretty well this time around. Perhaps MS has somewhat beat the spirit out of me, or perhaps I've finally accepted I have absolutely no control over if or when an exacerbation will occur, so why even try to fight it. Perhaps it's easier simply to embrace the disease. Stop fighting so hard and simply accept. Do what I need to do as far as taking care of myself, take my medications, run my protocols and simply leave the rest to God.

Saturday, February 07, 2009

Day two on Steroids

Thankfully this time, for the first time, I'm only going to do three days of IV steroids instead of the normal 5. I couldn't blog yesterday. Between the vision problems and the steroids I had a whopper of a headache. It's better today, not by much, but better. Thanks for all the advice. Between being VERY careful about what I eat and taking Prilosec OTC I have had minimal heartburn. Of course, I'm not sleeping and the shakes started this morning as well as the irritability. (Sorry honey). While I'm wired, my energy level is non-existent. You'd think I'd be able to sleep. NADA. Tomorrow morning I take my last infusion. The home health nurse will be by first thing in the morning. Of course, she will be calling my MD prior to pulling the IV to make sure she doesn't want to add the two usual doses. My last go around with steroids was 6 months ago. Hopefully, I won't need another for longer than that. On a positive note,our new front door was hung today! Yippee. The cold weather prevented the stain and polyurethane from drying, so the project took over a week to get done. It was worth it though. It's a solid mahogany door, stained a reg mahogany color. It has a beveled glass insert. I love it. Sure changed the entire look of the house. Not only outdoor but indoors as well. Gave our living room a much more "formal" feel. I'll try to post a pic in the next day or two. Hope you all are doing well!

Thursday, February 05, 2009

Will the struggles never end?

I knew it was coming, but I tried desperately to ignore it. I was hoping I was just having a simple flare up that would pass. However, the increased fatigue. bladder problems, increased balance problems and finally, another case of optic neuritis proved this was no flare up. I'm having a full fledged exacerbation. DAMN!! So tomorrow I start the regime. You know the one. A gram of solumedrol IV for 5 days. Mark already piked up the Prilosec. I'll start taking that tonight with the hope that it will help minimize the gastritis I always get. So, first thing in the morning the home health nurse will be here. My vision is so bad this time, I can't read and typing this is a challenge. It's been 6 months since my last round of steroids. I just hope this time one round does it and this is not a repeat of last summer and fall. I'll keep you posted!

Monday, February 02, 2009

Adapting, and more work to do

I have recently re-connected with several people I went to high school with. (I won't tell you what year I graduated). We are having our &* th reunion in 3 weeks. I made the decision I won't be going. I've told none of them about my MS or the wheelchair. In fact, the chair is the reason why I've decided not to go to the reunion. If I don't use the chair, I'll be walking like I started drinking 3 days before I got there, so that's not an option. What is it about wanting to hide the present from our past? Usually it's the other way around. We try to hide our past from our present. I mean really, I haven't kept in touch with most of them anyway, and those I have kept in touch with know about the MS etc. Why would I care what folks who I haven't seen or talked to in years think? Usually I wouldn't. Let's face it when you hit your &* reunion all the women are fat and the men bald, so who cares? However, for some reason the wheelchair is a sore point. I thought I had adapted and worked through all the issues that come with using the chair. Apparently I haven't. I've tried hard NOT to have to rely on it constantly and only use it when I have to. I haven't hid the fact I use a wheelchair from anyone else, so why would it bother me with old school mates? Somehow reunions reduce us to when we were 16 and wanting to fit in. Not striving to be "popular", simply striving not to be ostracized. I just don't want people feeling sorry for me. I hate the look of pity you see in people's eyes when they see you for the first time in the chair. The way some won't look directly at you. It's like suddenly you became a "non-person". In reality, the more I think about it the more I realize that this is a ME issue. I'm not through adapting. If I had really adapted and accepted I would have no problem rolling into that reunion. It seems I have more work to do on ME.