Life in the slow lane

2010-06-04T08:35:00.001-07:00

Merry Christmas!

2009-12-23T22:02:00.000-08:00

Merry Christmas to all my friends and family. I wish you joy and peace this holiday.

I am grateful for the opportunity to be back in Seattle now. Being away for 3 months was really tough. I made it and so did William and Bella.

I'm thankful to look back at what this year has brought me. I've had many great experiences, made fabulous friends, have a good job, a great partner to share my time with, and a beautiful pooch to love endlessly. I'm also thankful that I had two, almost three, days of feeling pretty good!

Here's to a New Year full of love and adventure.
Ciao!

It's beginning to look a lot like Christmas!

2009-12-04T23:07:00.000-08:00

The holidays are upon us. I can't believe how fast time is flying by, although sometimes it seems like it's terribly slow and tortuous. Thanksgiving was wonderful and I'm hopeful that Christmas will be as well.

I've been confronted by yet more MS troubles. I hate to think what it would be like if I didn't have the Tysabri. I'm optimistic that it is in fact working and then it is slowing the progression and lessening my potential disability.

It's been tough to face these past several weeks and especially tough this past week. I have a great support system. That is vital to dealing with the ever changing symptoms.

Anyway, that wasn't the purpose of this post. I have taken some time to explore San Fran. In my last ramblings, I mentioned that I had not taken the time to really explore this beautiful area.

Thanksgiving provided the time needed to explore and William came to visit. Exploring we did! Thanksgiving involved a trip down to Monterey/Carmel where we went out to sea for whale watching, explored Monterey and it's attractions, explored Pebble Beach, saw Carmel and the sunset at the beach. We experienced marine wildlife in it's natural habitat, rode some serious waves as the wind tossed us around. Then in San Fran we drove around to see more of the city, walked and shopped Union Square and walked to Chinatown. William got to experience walking the hills as we walked from Chinatown up Nob Hill. I think he enjoyed seeing me huff and puff.

San Fran is a great city with amazing diversity and a plethora of activities. One should never be bored!

So long

2009-10-25T00:32:00.000-07:00

It's been such a long time since I wrote. I can't believe it's been over a month. Time flies! A lot has happened in these past few weeks. I've finally settled in here in Pacifica, for now. I'm quite comfy in my room, with my books and computer, and eating cereal for dinner.

I haven't been out to really experience San Francisco. I am making that my journey for the next two months. I started this evening. My brother turned me on to an event called "Halloween in the Castro", a horror opera put on by the Gay Lesbian Chorus of San Fran. It was a great performance. The Castro is certainly a cultural mecca. I was impressed by the performance and was interested to learn the culture of Halloween in the Castro and how it had to cease because of violence.

That is what brings me to the point of all these ramblings. I don't understand how being gay is a tourist attraction? It would be different if people came to the area to experience the culture. But that isn't how it works. People who are not gay or are not straight allies do not come to experience or appreciate cultural differences such as when they visit Chinatown or Little Italy. Instead, people come to gawk or they come to provoke violence. That is what happened to Halloween in the Castro. Bigots came to the area to harm. And the result is that there is no big Halloween celebration in the Castro.

People do still celebrate Halloween and the shops/bars/restaurants stay open, but the city does not participate in an official event by providing police, public facilites, or traffic assistance. How disappointing that a fun holiday event has been ruined by stupid human beings.

Response to "My Big Fat Yes To Life"

2009-09-20T10:34:00.000-07:00

I wrote a segment back in February called My Big Fat Yes To Life. It was a response to thoughts following an MS Society Event for young adults living with MS. It's interesting to look back at how I was feeling and what I was thinking at that turbulent time. I was recovering from surgery, starting new treatment, getting involved with the Society, all things that were pretty big.

I saw in my post that I learned not to compare myself to the past. I am not the same, my body is not the same. Therefore, it isn't worth the effort of crying over what I used to be able to do. I look back and yes there are things I used to do, but there is so much more that I can do now that I couldn't do then. Why? Because I said so.

For example:
Ride my bike 70 miles in one weekend. Who knew.
Be proud even when I crash my bike.

I commented that I wouldn't be able to do another marathon. Well, guess again. I did a half marathon at the end of June and then jumped right in to bike riding.

Some of these experiences are possible because of my Tysabri treatment. I feel so much better on this treatment than the interferons. The medicine is good but the biggest part is that there aren't the awful side effects like the others. The pain, fatigue, depression, etc were too much.

There are a multitude of reasons for accomplishing more than I thought I could.
1. Great support system. Dealing with a chronic illness and a determined personality would be impossible without people to support you. William is a great coach and supporter. He is kind and gentle, but will put me in my place if necessary. Family and friends that support my efforts is crucial. I am grateful.

2. Good medicine. There is so much to be said about supportive physicians and good treatment.

3. Putting fear of debt behind. I can't waste energy knowing that my debt is mounting because of my treatments. It's just a fact. My life and health are more important.

4. Learning to say I Can instead of I Can't. I Can with modification is not to be confused with I Can't. There are those times when something just isn't going to happen. That's OK. Accept limitations and move on. Change the goal instead of dismissing the goal. Being realistic is very important for personal safety.

5. Accepting limitations is not the same as I Can't or giving up. It is acceptance, not conceit. Once this hurdle is overcome, the world suddenly opens up to many more possiblities.

Are you lonesome tonight?

2009-09-19T21:22:00.000-07:00

Yes. My roommates are nice, but you know, they are roommates. They aren't William.

I had a lovely conversation with my next door neighbor. I'm so impressed. She is in her last year of grad school getting her degree in physics and astronomy! My landlord had her daughter/boyfriend over for dinner tonight. We all got to watch Project Runway together. I felt like I was at a slumber party.

I'm looking forward to blogging again. Hopefully I will have something interesting to say!

Sleep where are you?

2009-06-08T03:12:00.000-07:00

Sleep for an hour then wake up? What the hell?

This is rather unusual. I am typically the one having trouble waking up not falling asleep. I do think the xanax is kicking in quickly so this will be a short note.

I want sleep. That's it. It's not too much to ask is it?

Tysabri Take Two

2009-03-20T23:04:00.000-07:00

It has been a while since having my second infusion. My third is coming up on April 1. I am thrilled with my response to this treatment. Some of my energy, etc, can be attributed to healing from my surgery. It's been three months and I can tell that I am mostly healed. My energy is returning, I don't have the pain and issues that I had before.

As for my MS, I think it is much better. My balance, energy, pain, etc are all much better. I have been doing things that I never thought I would do again. I've been running/walking, roller blading, and I have even signed up for ballet lessons. More on that adventure to come.

Luck o the Irish

2009-03-14T22:38:00.000-07:00

Happy St. Patty's Day weekend:) I am looking forward to going to the Irish Festival down at Seattle Center tomorrow. We were supposed to go today but William ended up having to work 12 hrs today. Bummer.

I killed time by cleaning. Shocking, isn't it! I scrubbed the bathroom and did some decorating. I've been working on cleaning out my things and donating to charity. So far I have bagged up 5 trash bags of clothes, all in great condition. I still have a lot to do. It's kind of fun going through all the memories. It's even better to feel like I'm cleaning out my life. I'm lighter already.

I tried to get Bella to take some pictures with me tonight. She didn't like that so much. I am loving my new glasses. I think they look a lot better than my old ones.

I've been working hard the past two weeks to be successful with the Interstitial Cystitis diet. OMG. It sucks. It is so strict. I've done ok, had a few cheats. Soda is a huge trigger. Unfortunately I discovered that twice. Green tea has been successfully added back. Yeah. Now I'm on to trying Weight Watchers again. I'm not going to meetings but am counting points and journaling. I have even started running again! Who knew!

My journey to health is to be continued:)

My big fat yes to life:)

2009-02-21T20:22:00.000-08:00

I had the pleasure of attending a special event last night with other folks my age living with Multiple Sclerosis. Now, that is not to be misinterpreted to mean that I am happy there are others out there with this disease. I am only happy to have found a network of young adults that are facing the same struggles that I face.

There were two young women at my table that were inspiring. One is a girl that was hit with MS at age 16 and it almost killed her. She spent 5 months in the hospital with an attack that hit her brainstem. She is now 22. Another girl was recently diagnosed within the past year and she is now 19. She is facing treatment, how to manage college, etc.

We had two speakers. One is a psychotherapist that works with people with chronic illness. The other is a life coach who also has MS. She was a world class cyclist, on the US cycling team, then bam.

I learned a lot about how I view my life. I learned a lot about how to cope with the challenges I face. I'm grateful for the tools they taught me.

The biggest lesson is this. Do not compare the present to the past. I am not the same person I was years ago. Because of this disease, my life has changed. It doesn't mean it is worse or better. It means it is different. I may not be able to complete another marathon, but it doesn't mean I can't walk in the MS Walk or walk my dog around the block. It means that I need more sleep, that I plan my outings, and I take extra care when walking down the stairs. It means I learn to say no when I can't take on as much as I could, it means I say yes to treatment options.
It means I say yes to life.

Chitter Chatter

2009-02-17T19:49:00.000-08:00

I feel the need to post, but have no idea what to talk about! I have been so busy with work and it has caused me to feel like I'm caught in a tornado. I did get a chance to go home and visit the family and a friend. I'm glad I got to see them.

My grandpa was so funny. He was complaining of his right hip hurting and giving him some trouble. He looked up at us, laughed, and said "maybe it's old age"! He's 90. I suppose it's ok for him to say that.

I'm looking forward to a short week of work. Last week was so stressful. It's nice that we had a break. That's the best part about working in the schools. The schedule is fabulous. I'm looking forward to finding out where I will be next year.

Ta ta for now. I'm pooped. William is at work, Bella is running around fussing at a barking dog, and I am about to call it a night.

Tysabri: Take One, Action!

2009-02-04T20:38:00.000-08:00

I have survived my first Tysabri infusion. I was very happy to walk in to the clinic to discover that it is small, quiet, private, and I had the same nurse that came to my house to fix my messed up steroid infusion. It gave me some comfort to see a familiar face.

The TOUCH program is very specific. I had to answer some questions about how I was feeling, what medicines I had taken, all so I could qualify for my infusion. The form the nurse filled out was to be sent to the TOUCH program.

Once all the prep stuff was done I was able to get the IV inserter. This nurse always does a nice job. IV in, saline and heparin through. Yuck. I can always taste it. Gross. Then the Tysabri was set up. Cold! The drug has to stay around 40 degrees. It totally cooled my whole body. I needed two blankets and a space heater to be comfortable. The nurse was great and took good care of me. She had to monitor me closely during and after the infusion. All in all the process was three hours.

I feel pretty good. I needed Rx Motrin to battle the joint and muscle pain and I'm pretty tired. I had instructions to go home and stay there. So that is what I did. I cleaned a bit, took Bella out, then had cereal for dinner.

Here is to the future. I don't know what Tysabri has in store for me, but I sure hope it is good.

The Tysabri Countdown

2009-02-03T20:17:00.000-08:00

Tomorrow is the day. I check in at 2pm. I am convinced that it will give me my life back. Energy, strength, too many to mention....

To be continued....

Goodbye January

2009-01-31T22:16:00.000-08:00

What a month! This is our 6 month anniversary this weekend. We celebrated by taking Bella to the beach. Who knew-we are a short 15 minutes from a cute beach area. It was a bit cold, but the sun came out for a bit. I'll take that any time I can get it!

I got some exciting news today. Apparently I have family that I never knew. My grandmother had 4 brothers and sisters that she never knew. It's so unfortunate. Grandma would have loved to know her brothers and sisters. I'm looking forward to getting to know them and learning more about my family.

This month is going to bring great things. I will be having my first Tysabri infusion on Wednesday. This is really great news. I am hopeful that this drug will help stop my MS from spreading. I am even more hopeful that it will give back what MS has taken from me.

As for recovering from surgery, well I can say that I experienced almost a full day of being pain free! I feel relatively good. The surgery really made a huge difference. I'm so grateful that I took the time to research my options and stand up for myself. I hope to encourage other women to advocate for themselves and to fully understand their bodies and the choices they make for their health and well being.

Now, my MS is another story. The steroid treatment gave me some of the sensation back in my legs. My balance is a little better, but I have had a couple of close calls...but no falls. I almost bit the dust on the stairs again yesterday, but didn't. I'm very careful. I take my time and hold on when I can. My biggest trouble now is proprioception and balance. I'm having a lot of dizziness and vertigo but it is mostly manageable. My daily endurace is improving. Thank goodness for drugs! There are a few options for managing MS related fatigue. I am taking one to help me so I can actually work a little bit.

I'm a very reflective person. I'm always trying to figure out how I have made it this far and where I am going to go in the future. I made it this far because I am strong and I have had very good support from those close to me. How will I make it in the future? The same way I made it in the past.

People make choices every day. Those choices shape our lives. We must accept the choices we make. I have chosen to face forward and do everything I can to minimize the effect of this disease on my life. I have chosen to take this opportunity to help others with this disease cope and enjoy their lives. I have chosen to give back to the MS Society by participating in the walk and raising important funds for research, education, and valuable programs for those with MS. I have chosen to accept that acceptance is not giving up. I have accepted that I have this disease. I have not given up on my life or the chance that in my lifetime I will see a cure.

Surgery pictures and story.

2009-01-23T13:06:00.000-08:00

This is the final product. We are going backwards here with these photos. The uterus is that big thing at the top middle, the fallopian tubes come off each side, and the white lumpy things with the brownish stuff on them are my ovaries. There is now a big open space in the middle that used to be full of endometriosis, scar tissue, inflammatory tissues, fluid filled inflammatory tissue, etc. It looks like chopped/burned liver right now but it's healing.

Now that I have seen these photos, I have a greater appreciation of my pain and healing process.

Here is the before picture. My tubes and ovaries were pulled down under my uterus and stuck to things they shouldn't have been. The area called the cul de sac was completely "obliterated" basically filled full of crap that shouldn't be there.

This process taught me about persevereance and not accepting unacceptable solutions. Women have the right to understand their bodies and to preserve their bodies when possible. Removing healthy organs does not cure endometriosis. Removing endometriosis is the best way to alleviate the pain and reduce the risk of regrowth.

Thank you to my doctor and to the women at the endo support group.

My wonderful doctor gave a speech at the local Endometriosis Assn chapter. She chose to use my surgery for her example. We were fortunate to see her performing the surgery and explaining exactly what was happening. I have a copy of some of the pictures from the surgery.

Anniversary week

2009-01-19T00:11:00.000-08:00

I have celebrated the one year anniversary of my diagnosis with MS. I look back and reflect on this year, and boy does it seem just crazy!

I had some of the scariest times, some of the funniest times, some of the most fantastic travels, and some interesting dating experiences. Who knew?

I have to look back and say that I am grateful for everyone who crossed paths with me. From friends to strangers, doctors to family, everyone has been a blessing.

I have to include the internet community. I am active on MSWorld.org, this blog, Facebook, somewhat on MySpace, etc. I have met so many inspirational people and they are nothing short of amazing.

I loved my fellow blogger, Lisa Emrich, as she described being the VIP of HealthCare Reform by being the face of chronic illness. How fantastic was that? It's so true.

Being a front row participant in health care and desiring reform is shaping my career choices. I am a healthcare provider. I see unfortunate events every day. Bummer for me that I also have to participate in this system as a patient. I'm looking forward to working with the advocacy department of the National MS Society to help lead the front for health care reform and availability of resources to those living with MS. It is how I am learning to cope with living with this illness.

Here is to the new week. I will meet new people, start a new job, continue working on my fundraising efforts for my MS Walk, and I will be anxiously waiting to hear about my Tysabri enrollment.

Love to all. Have a wonderful week.

http://main.nationalmssociety.org/goto/Nickies-MSFits

2009-01-18T01:55:00.000-08:00

My dear Bella! Isn't she beautiful?

2009-01-18T01:53:00.000-08:00

My love. My support. I couldn't make it now without him.

We were able to enjoy a walk around green lake today even though I am on my third day of IV steroids.

He was wonderfully supportive with my IV complications and even removed the IV from my arm tonight. We are waiting for the nurse to come back tomorrow.

Isn't he adorable?

Equation for Disaster

2009-01-13T19:43:00.001-08:00

Stairs + Nickie = Oops!

Tysabri, you can't come soon enough.

There's a Nightmare in My Closet

2009-01-12T23:02:00.000-08:00

and it's name is Multiple Sclerosis. I hate this freaking disease. It's bad enough to deal with unexplainable fatigue, weakness, falling, fear, uncertainty, but really is it necessary to steal my dignity???? Huh, huh?? I want an answer. I want an answer for why I deserve this? What did I ever do to deserve this?

I try my darndest to put a bright smile on my face, go to work, enjoy my friends, walk my dog, pursue higher education, dedicate my life to serving others, and creating a better place for the beings with which I share this Earth.

I know that many other people are just as non-deserving as I. So I plea for all of us...Why? Why can't it be like football? Why can't we choose to deny a penalty? I don't recall standing in line in front of God saying pick me, pick me! There are many days like this one that I don't really feel like being an ambassador. I'll change my mind tomorrow. I'll say that this disease gives me an opportunity to make the world a better place for those who may get it later. I'll participate in taking awful medications so we can know if they work. I'll look for ways to encourage others to not give up, to keep on truckin'.

So I smile. I've been told plenty of times that I have a nice smile. At least I have something.

Although tomorrow will be a new day, the nightmare will still be in my closet.

Winds of Change

2009-01-08T00:02:00.000-08:00

I hope this new layout is well liked. I think it is beautiful. I do wish that the design flowed all the way down the page. It feels as if it is abruptly lost as you scroll down.

Oh well. It's not a perfect world is it? That brings my to express my latest thoughts. I'm kind of tired of talking about how I feel, my recovery, illness, ickyness. I live it everyday. It doesn't need to be the talk of the town all the time.

Enough of that and on to the idea of "it's not a perfect world". What is a perfect world? What brings us to decided one day that everything is perfect? Is it ok to strive for perfection? I don't know.

What I do know is that this world is far from perfect. Towns around me are flooding. My friends are in danger or at least stricken by the historic floods hitting this area. Children are having children and drowing them in toilets. Stupid people are having babies and letting them starve to death.

I lost a baby once. Some people don't consider it to have been a "baby" as I was very early in pregnancy. My due date was June 18, 2004. After spending a year and a half desperately trying, seeing that extra pink line meant the world. When that was taken away it felt like a part of my heart died with it. How, just how can someone spend nine months growing a new life inside of them and then just throw it away?

I can only hope that these babies find peace now that they have passed through the arms of the devil and into the arms of an angel.

Tricky

2009-01-06T14:39:00.000-08:00

I swear my body is messing with my head. Had to increase the pain meds today. I'm a bit bummed.

Don't feel like writing much. Maybe later.

Ciao

Never challenge the gods

2009-01-02T13:43:00.000-08:00

Not long after I posted my challenge to 2009 to bring it on....I fell down the stairs. I said I was on my knees begging. That was to be figurative! I didn't need to be on my knees at the bottom of the stairs. Damn. I should have kept my mouth shut. I went down on the top of my feet and then on my knees. I bruised the top of my feet and embedded some of my pant fibers in my knee. I'm ok. The ego is bruised.

Today has been a bit rough. I took Bella to the vet because she has been having potty issues. She checks out ok. I cut way back on pain meds so I could drive myself today. Mistake. I was just about in tears by the time we got home. It's time for a nap. I stumbled on the stairs this morning as well. I'm having some proprioceptive issues. I swear I lifted my foot high enough to clear the stair.

Damn disease.

Bring it on 2009

2009-01-01T22:54:00.000-08:00

Happy New Years!

Don't I look good for being one week plus one day post op? Thank god for MAC! Had to nap and take lots of meds in order to tolerate the night out. I refused to lay on the sofa to ring in the new year.

I am joyous to be ringing in the New Year with my William!

Ok, so seriously, bring it on 2009! That is my challenge to you. Could 2009 be any worse than 2008? I hope not! Things in 2009 can only get better.

Reflections on the past year leave me wondering where I found the strength to make it to 2009. Let's take a look back, shall we?

January-landed in the hospital for a week and told that I have "probable" multiple sclerosis. Great. Just great. Not only have I come off of holiday break without pay, I lost another 2 weeks to illness without pay. Then I get the hospital bills in the mail. Healthcare costs are ridiculus! But that is a discussion for another day. I did discover that I had some really great friends and was dating a jackass. He totally ditched me while I was in the hospital. What a way to get dumped. I also managed to land a fantastic doctor.

Feb-March-these months tend to run together. They are filled with work, sleep, many doctor appts, tests, mri, spinal tap, blood, trips to San Francisco to the MS clinic for a second opinion, etc. I got the pleasure of starting the Avonex. Lovely, I get to stab myself in the muscle of my leg, get the flu for a few days as a side effect, and get no pleasure from this drug. Only the hope that it will stop the disease.

April-I've finally started to get used to the diagnosis and have just about stopped crying several times a week. The diagnosis becomes official on my birthday. Happy Birthday to me.

May-Good news, dating a pretty cool man. Oh boy, just when I thought things couldn't get any worse. Boom. Pain. Terrible pain. ER again. No answers again. OB visit and tests show my anatomy is not where it should be. I'm scheduled for urgent surgery. Then out of the blue, slam. Some old man who shouldn't have been driving broad sides me by running a red light. Thank god I'm not dead. Two days later, I get my surgery. I come out of surgery to be told that there isn't anything they can do, I should have a total hysterectomy. Again my life is plagued with some freak medical situation. How overwhelming could this get? It's not done yet! One of my best friends of over a decade decided to cut himself out of my life because of an insecure girlfriend. That hurt.

June-Finish my assignment and head to a new one in downtown Long Beach, Cali. Pretty cool and rather uneventful. My family came to visit and we got to see the sights together. Mom got to see the ocean for the first time.

July-August-Now this was an intersting time. This is the first time that I think I was technically homeless. My assignment got canceled in Long Beach. I couldn't get in to another assignment quickly because my car was still being fixed in Santa Maria and I was in a rental car. Plus I didn't have a license anywhere except Cali. I accepted an assignment back in Wa so I could be close to my friend. I managed to pack, unpack, pack, unpack more times that I care to discuss. My apartment couldn't get extended in Long Beach so I had 2 weeks to kill before I could get to my apt in WA. I got to live in a hotel for a could of weeks. It certainly taught me about what I need and don't need. I made a trip to Yosemite. That was cool.

Ok, so finally I make it to WA. In the mean time, I had been chatting it up with this pretty cool guy I met on Yahoo. We wrote back and forth every day and I shared pictures from my trip. We talked about getting together when I got in to town. Along came William, the day after I moved in we had our first date. It was fantastic! Finally, someone who seems normal and kind. He is everything I have been looking for. I hope I get to keep him for a while.

So I'm getting settled in to WA life and bam I get hit with the MS hammer. I ended up flaring pretty bad and on the IV steroids again. I missed more work, that plus all the other work I lost and having to live in a hotel for two weeks did me in. I hit rock bottom. I was choosing between food, medicine, and gas. Horrible! I hope to never go back to that again.

September-December-This is a happier time for me. Things with William are brilliant. My Bella and I moved in with him at the end of September. I landed a great job. I found a great doctor who promised she could help me. I am looking forward to new MS treatment and I just had surgery for my messed up anatomy. I'm pretty bummed out to discover that my fears were true. My meds aren't working for my MS. I now show lesions in my brain. Freak out time! Tysabri here I come.

My brilliant doctor was able to save my parts and if we so choose then children can still be in my future. I only lost part of the left ovary and the posterior cervix. That is much better than the alternative.

2009 I'm hopeful that 2009 will bring me happiness instead of pain and heartache. I'm planning on starting my new MS treatment soon. I will have to wait til the end of the month because of my surgery meds. I shouldn't have any more endo pain since the endo is gone! I still have to deal with the interstitial cystitis. That won't be going away.

I plan on becoming an advocate for womens health and endometriosis education. I will be organizing a team for the MS walk in April. I would like to raise some funds for the MS Society and become a source of encouragement for those struggling with this terrible disease.

So 2009, I don't know what you have in store for me. I can only pray that it is good. Please, please, please....on knees begging!

A Million Bucks!

2008-12-30T19:31:00.000-08:00

According to my wonderful, extremely talented physician, I look like a million bucks! She was quite impressed with my recovery. The assistant was amazed that my pain level today was reported less than my preop visit! True!

I got the operation report but she forgot my pictures. They should be coming in the mail soon. She said my pics are ones she is especially proud of. I must have given her a run for her money.

According to the report my tubes were freed from the posteriour uterus. The sigmoid colon was stuck to the left pelvic sidewall and was freed. My left ovary was stuck to the posterior uterus as well. It was cut apart and freed. The right ovary was stuck to the posterior cervix and the rectosigmoid colon. It was given a get out of jail free card as well.

A large portion of endometriosis (nodule) was removed from the posterior cervix and left utersacral, the ureter was dissected from extensive retroperitoneal fibrosis.

I could go on and on as the report is 3 full pages long. But you get the idea. Part of the left ovary and the posterior cervix are all I lost. I am grateful. The endo pain is gone. I have surgical pain, but that hot burning coal is gone!

The visit today was funny. William has been wonderful as I have been gushing about all along. He has been such a great partner in all of this. Bless his heart. He sure has had more than he bargained for pretty early on in this relationship.

The biggest issue discussed with the doc today was the interstitial cystitis. That is a pretty painful condition. Bladder pain has been a part of my life for a long time. Unfortunately it has stuck around since the surgery. So the doc decided to offer another choice for pain control. Enter the catheter! She wants to teach me to self cath to insert a lidocaine mixture into my bladder.

She proceeds to have me lay back and poor William couldn't decide if he should leave the room, hide, or help. The doc said it would probably be easier to teach him how to do this on me. I politely declined on his behalf. Yeah right! I'll do it myself before I make him do it.

She cleaned me then inserted the cath then shot the mix up there. I had to hold it in there as long as possible. I made it a few hours before needing to do my business. Wow! It worked. I didn't have any pain. Yeah! I guess that means I'll be learning how to do that.

I made it with less pain meds but still need a significant amount. Yeah Dilaudid!

I'll post the surgery pictures when I have them.

Ciao~!

2008-12-29T16:10:00.000-08:00

Hmmmm, ya think she might be spoiled?

She is such a snuggle bug.

Pets can always be counted on for providing snuggles and support. I'm not sure if she is here to support me or steal my nice warm blanket. I would like to think she is supporting me, but I'm sure the warmth is the true cause.

Recovery is going well. I have cut back on my pain meds. We went out for a couple of hours yesterday. It felt great to get out of the house. I haven't been as concerned with cabin fever because I have felt bad, but poor William was about to go insane. We have been snowed in for a few days. He hadn't left the house for 3 days. Finally the snow is melting! Yippee!

I'm getting excited to get back to work. I certainly enjoy laying around and snuggling with Bella, but I prefer to be around others. Thankfully Will has been off for holiday. He is off for the rest of this week.

The laundry list of symptoms continues to plague my being. I can't tell what is drug related and what is not. Dizziness seems to be getting me lately, not to mention the double vision, strained vision, and overall feeling of falling asleep.

Speaking of which, I think it's time to shut this off and snooze for a bit.

Tata for now.

So this is what it's like to be stoned!

2008-12-27T13:16:00.000-08:00

Wowsa! Thank God for dilaudid. I've been learning a lot about this drug over the past couple of days. Opiate and true narcotic. AKA hospital heroin, it sure does a number on me. I'm already ready to drop. My eyes are crossing and it is becoming increasingly difficult to manuver this intricate piece of machinery I call a computer.

My sore tummy

2008-12-26T12:18:00.000-08:00

I have 5 incisions. My tummy is very sore and swollen. It's getting better day by day:)

The Percocet Dragon

2008-12-26T10:54:00.000-08:00

Here is a view of the backyard. Lots and lots of snow!

I have officially declared Percocet an enemy. Swelling, bright red rashy cheeks, etc. I spent lots of time downing a lot of Benadryl.

Thankfully the dilaudid works well. Today has been fine. I walked my dog around the block. She was kind enough to let me take it easy on the walk. My belly is still very sore. The pain becomes intense if I miss any meds (like overnight). I woke up shaking in pain, but the meds kicked in quickly. Yeah for modern medicine!

I'm hoping these bandages fall off today. The nurse said they will come off in the shower. I have no shower restrictions. They are bugging me though. I don't like that they get wet and then stay on me. It makes me worry about germ buildup. Plus I really don't like anything that feels wet on my skin unless I am in the bathtub or shower. Pools are ok too:) But not wet bandages.

I think I am going to get very bored! I am enjoying snuggling up in my warm blanket with my Bella. William has to work today. He had a heck of a time getting out from in front of the house. We have approx 5-6 inches of compacted snow and ice. It's incredibly difficult to drive on. It is supposed to melt sometime soon. Cross your fingers!

Our 1st Christmas:)

2008-12-25T15:45:00.000-08:00

William and I shared our first Christmas together today. He gave me a lovely bracelet made with Mother of Pearl and a beautiful jewelry box. He also gave me a fabulous warming throw that I am snuggled up in right now. It is curious though how I seem to have to share this nice warm blanket with my dog!

William has been stressed out with the economy situation, the bad weather...snow snow snow and more snow...plus he has had to help me with surgery stuff. So I gave him a certificate 1.5 hr massage, some relaxing aromatherapy, and a 100% cashmere sweater.

Seriously, can you believe how much snow we have gotten? I measured a foot of snow last week. We have been getting inches and inches on top of it all. The snow gods dumped another 3-5 inches on top of us today.

Recovery is going well. I am allergic to one of the pain meds. My face turned beat red, my face and neck were puffy and swollen. Plus, I am very itchy. I cut out the dilaudid and am sticking to the percocet for now. That will help me determine which med is giving me trouble.

I will keep this updated as often as I can. I can't tolerate much activity including typing. My eyes start to cross and everything goes blurry.

Recovery

2008-12-24T17:35:00.000-08:00

Home sweet home...It is so much nicer to rest and heal at home than at some noisy hospital. I must say that the hospital staff were wonderful. My doctor is brilliant and very caring. I couldn't have asked for a better situation.

William has been a trooper. He is amazing. He held my hand as my IV lines were strung, he fed me dinner because I was too weak to feed myself. He slept in the most uncomfortable chair through the night to be by my side. I sometimes feel that being with him is not real. We are such a perfect match. It certainly doesnt' hurt that is he adorable:)

What comes now? I'm hoping for a quick recovery. I can already tell that my endo pain is gone. I feel surgery pain but not the same pain I had before. Fabulous!!!

I ended up losing part of my left ovary and the back of my cervix. All in all that isn't so bad. The doc assured me that she stitched the ovaries and tubes back where they should be. She got rid of all the adhesions. She suggests that I most likely will not have to have another surgery.

I am hopeful that my drug collection helps my pain. So far it is tolerable but that is with an alternating mix of RX Motrin, Percocet, and Diludid, a heating pad, comfy sofa, and a beautiful man to take care of me. How could I ask for more!

Surviving

2008-12-24T09:02:00.000-08:00

Surgery was successful. I will post more after I speak to the dr today. The hospital staff is wonderful. William is wonderful. I have great friends and family.

I feel like someone had a sword fight in my belly, but other than that no real complaints. I have this nasty wound drain hanging off of me that should come out soon. Thank goodness the foley catheter is out. I have been up and about twice today.

I don't have anything really clever to say right now. My eyes are starting to cross due to the percocet. Ciao

Counting down

2008-12-22T21:35:00.001-08:00

Well, it looks as though the time is near. It is 9:30pm and we are planning on leaving at 5am. I have to check in at 7:30am. Hopefully leaving nice and early will remove some of the stress of driving on the ice.

William has been fretting quite a bit and is very nervous about the drive. He has been wonderful. I am very grateful that he is by my side.

My preparation for the surgery has been successful thus far. Although, I must say it has been rather unpleasant. I think I now know what it feels like to have a sword up my *$$.

I get to wipe myself down with some sort of antibacterial wipes the hospital gave me before we leave. Love that they are called Chlorax...remind you of anything?

Sleep should be calling my name soon. Bella needs to go out. I'm wondering if it is safe for me to take her or if I should still be within 10 seconds of the throne?

Walkin in a winter wonderland!

2008-12-22T12:54:00.001-08:00

Welcome to Seattle! I thought I left all this crap behind. Not that I mind the snow, really. It is kind of fun. The trouble is that Seattle is not a city that can handle a foot of snow. Way too hilly...way too hilly. Many roads are closed, a couple of charter busses crashed and almost came crashing down 30 ft onto the interstate below. It was quite a sight to see the front end of a huge bus hanging over the edge!

Roads have been closed, trees are being uprooted due to the weight, and some buildings have collapsed. Luckily people here are somewhat smart and scared of the roads. Most of them actually pay attention and drive slowly. We will see what I say about that when we drive to the hospital in the morning.

Here are some pics of the snow. I measured a full foot in the back yard. Bella really doesn't know what to do. She is getting more used to it as the days go on. It's been snowing for a week. The largest part of the snow came in the last couple of days. We are to get more Tuesday night and into Wednesday. Great. Just great.

Part of the neighborhood. On a clear day you can see the Cascade Mountains.

Some sledding fun. This is the advantage of the hills. Sleds and skis. We are seeing a lot!

The front of the house. Thankfully I won't be driving my car any time soon.

Our backyard

Isn't this beautiful? This is the road entering our neighborhood.

Survived the trip

2008-12-19T00:21:00.001-08:00

Somehow by the grace of angels we survived the trip to the doctor today amist a bad snowstorm. Yikes, it was awful. It took two hours to get there and two hours to get back. We left at 8:45am and returned at 5pm. We are both exhausted.

So after a visit with the surgeon and at the hospital, everything is set. Now we just have to hope the weather holds out for us. It is to snow every day right up till surgery.

The California Dog

2008-12-17T20:12:00.000-08:00

He he he he! My dog has experienced her first snowstorm! I don't think she likes it!

The countdown is on.

2008-12-17T19:54:00.000-08:00

I have 5 days to wait for surgery. and of course, since nothing in my life can come without inconvenience, it is snowing; lots of very slippery snow. I have pre-op appts tomorrow. Guess what? I have to drive 60 miles to this appt. IN THE FREAKING SNOW!!!!!!!!!!!!!!!!!!!!!!

Ugh. Why?

I think I should be a snow leopard.

2008-12-11T20:50:00.001-08:00

If I am forced to have a spotted brain, then I should get to be something strong and beautiful. I choose the snow leopard.

I unwillingly had to accept that my body is now eating my brain. I have lived in oblivion for most of the year knowing that this disease had affected my cervical spine. I would always brag that my brain scans were clear. Then bam. "You have some small spots." That is not what I wanted to hear. No, no, no.

Of course, I did tease William that now when I screw up or drop something, I can say "I have brain damage what's your excuse". He didn't find that so funny. It does make it easier to accept that I couldn't figure out how to turn on the vacuum cleaner! The button was hiding. I swear!

I went to my neurologist expecting to discuss how my MS would affect my pending surgery. I also wanted to discuss new treatment as the Avonex makes me 100% miserable. I am at the point of premedicating with 800mg of Advil with a Vicodin and then another round before bed just so I could sleep. Otherwise sleep is impossible as I writhe in total body pain and shake from fever. Great. Is this what I have to look forward to for the rest of my life? I don't think so. I'm only 31. There are too many years left for that bullshit.

As I discuss the crappiness of the Avonex, my lovely doctor is looking at my most recent MRI scan. She looks at me funny and asks "so you've never had a positive brain MRI?" Can positive mean I have one? If only. I like that. Yes it's positive, I have a brain. Nope. Never had a positive brain MRI. Then the words are spoken. "You have some small spots". Damn. I guess that means it is now positive.

More aggressive treatment options are scary. Tysabri can cause a fatal brain infection. Novantrone can destroy the heart muscle. There is always a clinical trial. I'm a scientist at heart, but am not sure I am ready to be a part of a study.

Tysabri it is. The enrollment packet is in the mail. The rest of the saga is yet to come.

Surgery for Christmas

2008-12-09T23:43:00.000-08:00

Sometimes I wonder if there is a problem I don't have. Yes there are many, but good grief enough is enough.

It was discovered earlier this year following an ER visit and surgery that I have stage 4 invasive endometriosis. My pelvis gave itself a new construction permit without consulting me first. That's a bit pissy.

My first round of doctors said to have a full hysterectomy. What???? No thanks. I don't understand how in this day there can be such misunderstanding about women's health.

Thankfully I have found a wonderful, caring doctor who is positive she can help me. So for Christmas I am having my pain removed along with my right ovary and tube, scores of adhesions, possibly part of my bladder, and possibly part of my cervix. We are going to cross our fingers that my bowel stays the way it is. Leave it, leave it, leave it!!!

I'll post updates following surgery. I will have nothing else to do other than drool from pain meds.

MS part 1

2008-12-09T23:24:00.000-08:00

If you know me, then you know that the past few years have been full of tests and trials. Time continues to pass and instead of answers to comfort my soul, I am left with questions and uncertainty.

I suppose there are blessings that come with this. I will get back to you as to what those blessings may be. I'm still trying to figure that out.

For educational purposes I will explain the constraints placed on my being. First comes Multiple Sclerosis. If you are unaware of what this disease is then I welcome you to visit the National Multiple Sclerosis Society website or the MS ActiveSource site. I have provided those links at the bottom of my page. To save you some trouble I will give a short and sweet definition. My body is attacking itself and destroying my central nervous system. MS is a demyelinating disease which means that it creates short circuits within my nerves so the messages delivered are misunderstood.

MS affects people in different ways. I will share how it affects me.

Fatigue. I'm not talking about being sleepy from staying up too late. I mean total body debilitating fatigue. It is an overwhelming sensation that has brought me to tears.
Weakness. Stumbling, falling, needing help opening jars and bags, needing rest while shopping, requiring help to do things I should be able to do.
Balance. No longer being able to function while enjoying my crazy shoe collection. Now they are ornamental. Such a shame. They are beautiful.
Pain. Spasticity of my muscles. Ouch.
Vision. Sometimes I feel like I have water spots on my eyes. Weird.
There are many more but I don't want to bore you.

So why share? I suppose it is to raise awareness. MS affects people in invisible ways. Those with MS, me included, may look healthy and fine, but we aren't fine. We are tired, scared, and hurting. We need friendship, support, and understanding. We are not lazy. Napping is not a luxury. Work is ten times harder.

Unfortunatly MS doesn't affect only the patient. It affects our family and friends. What it has done to my mom is unspeakable but that is another story. Those that love us pick up the slack. What we can't do, they do for us. There are not enough words to express the gratitude.

Happy Holidays

2008-12-09T22:51:00.000-08:00

The holiday is rapidly approaching and here we are found in a desperate time. It is sad to think that many are facing the chill of the season without food or a warm place to sleep at night. May the people of the world find peace in their soul and love in their hearts. I hope the new year will bring happiness to those experiencing sorrow.