I know I know, you’re all dying to know if i made the walk.. Well, by my title, nope!
My legs are swelling so much and the pain is seeping in. Been lying in my bed with my legs elevated and watching Grimm on DVR. Roger and Shelby went to the walk, which makes me feel better. I’ll get my t-shirt!! 😉 Hoping they get some good photos I can share of my fabulous team, Tracy’s MSkateer’s!
I know I’ve been kind of a bummer in a couple of my blogs… don’t mean to be. Sometimes I get so overwhelmed I can’t shake the blues off of my shoulders. Believe me, I fight them every day. On the up side, even when I’m down… I’ll never stay down for too long!
Truth!
I’m lucky, as no matter how bad it gets I have the best support system behind me. My family and friends rock and always make me smile no matter how hard the tears are falling. That, in itself, makes me one of the luckiest people in the World! Now if only I could win the Lotto! 😛
Well, not really. I was born in San Mateo and lived in San Jose for a bit. Do you know the way to San Jose? I do!
My heart will be in San Francisco as my dd [darling daughter] is on her way there with her HS Band.
Photo by Daniel Schwen
She’s a traveling fool. Last year she went to NY and now SF. By the time she graduates she’ll be well travelled. We hope every year we can afford to send her on these band trips, as these are the times she will always remember. I so hope she has a fabulous time. She needs the break, and this is just what the doctor ordered!
Can’t wait for some pics and to see what she brings me back… hmmmm, she’d better get me a gift! 😉
I try hard to find the humor in having MS, but honestly…NOT funny! For me, the only way to cope is to find the humor. It’s getting harder daily.
To be ‘upbeat’ about it, I do have blessings in my life. I have a hubby who stands by me, 3 fabulous teenagers [yes fabulous and teenagers in the same breath], a roof over my head, food, and the list goes on. Roger [hubby] has spoiled me: mini fridge in my room, microwave, 40″ flat screen, hospital table, MAC, iPad, iPhone, etc. My parents purchased me an awesome king size adjustable bed. So on the outside it may seem ‘all good’. Yes, what a life. I can spend my time cozy in my bed, watching my Crossing Jordan on Netflix, dozing, cuddling up with my 3 dogs, play on my MAC. Joyous, right!
But on the inside emptiness prevails. I’m alone most of the day, no way to just get up and go, have a life…a quality life. I can no longer make my jewelry as my hands drop things all the time. The stress and sadness that causes is unbearable. Yet another thing my MS has taken away from me. Sometimes I think I must have been a real bitch in a previous life! Most people would laugh and say, “In a previous life?!!” 😛
So how do I cope? Never said I do, I just keep on breathing. I’ll never cope too much has been taken from me. Being primary progressive is a slow drawn out death. When dx’ed in 1997 [finally] I have gone from a cane, AFO’s, walker, manual wc, to a power wc. The fatigue is paralyzing. And fatigue and being tired are two separate issues. Being tired, I can sleep. Being fatigued, I just lie there, empty and alone.
please no more
I’m feeling all of this right now as new issues happening yet again. I’ve tried many different meds. All of which did not help or caused other problems. Now, the Tysabri, may have to be stopped due to a rise in my liver counts. We will find out next month. Two blood test have shown a rise, if the third does, yet again, another med bites the dust. After awhile you feel like ‘why the fuck should I keep trying!’ With every new issue it feels like another part of you has died. The mourning period starts.
I know, I know, “Poor me, pour me a drink!” I wish a pity party was that simple. And trust me, the last I want or need is anyones pity!! That just pisses me off. This blogging thing is to help me get it out and down in to words. Trust me, I know I’m no writer, but it’s my blog and I can blog if I want to! HA!!! I’ve not been blogging much as my hands will not cooperate. I have Dragon Naturally speaking and am trying to figure it out. lol My problem is it won’t allow the work fuck!! You know that doesn’t work for me! 😉 Figured I’d blog to let my readers know I’m still alive and hmmm not kicking… you get the idea.
One last lil’ diddy… ‘Be kind, for everyone you meet is fighting a hard battle.’
Off to watch more Crossing Jordan! [love me some Nigel]
Before we left I called the Courtyard Marriot to make sure my roll in shower with bench room was still reserved for me. I was told yes. Well woo hoo… maybe not. Ten minutes later the hotel’s manager called and said their room was a roll in but had no bench. :-O But… the Residence Inn Marriott had one and would be reserved for me. Well cool beans..
We hit the road for Carlsbad late and finally got to the hotel around 10:30 pm. Check in was nice and easy, the rest… not so much. The first place I looked when we got in the room was the bathroom. Yup, roll in shower, Nope no bench and no places to put shower essentials. Ya know a shelf! Roger went to get some ice from the refrigerator and it seemed clogged. When he opened the ice maker there were two Smirnoff Ice drinks, one broken from freezing. He had to take out the ice maker and empty it to make sure no glass was in the tray/box. NICE! Then in one of the fridge drawers the previous customers also left more drinks. Does no one clean the fridge? By now I’m a wee bit irritated. I ring down to the front desk and ask about the shower. They tell me they have a portable folding shower bench they will bring to me. Really, I could bring my own. The attached benches are much more sturdy and safer. I politely declined their offer. WTF!! You would think if you ask for a roll in shower with bench and they say they have one, that’s what you would/should get. The worst part for me, is when these things happen it’s so in my face that I’m crippled in a wheel-chariot! Guess if your crippled, hotel stays are not for you…
BUT, as always, Hell hotel would not ruin my trip.
The next day we headed out to my uncle’s dentist’s office. I was prepared for bad news per the dentist from my area. Guess what, not nearly as bad as the ‘liar’ said. I had a bit of decay [2 small cavity areas] which Greg filled. Then one, not two root canals were needed. We made the appt. for the nest day. Greg also filed down my two top front teeth as they always jetted out a bit on the bottom. Took two minutes and now my front teeth look so cool! Next I had the best teeth cleaning ever. We headed back to the parents house and my sister Laura and her new adorable puppy [Finley] came over. It was a nice night with great food!
The next morning we got up and Roger washed my hair in the sink and I did a hooker bath. Fun… We then took off to the Endodontist’s office for my root canal. As root canals go, it was fabulous. Not a smidge of pain and fabulous people there. It was great. Then the parents took us to lunch…I had soup. lol Next was the moment I’ve been waiting for for 3 weeks; off to see my nephew Max!! YIPPEE.
Baby Max
This made up for the crappy hotel that we will never occupy again.
Max is just a love and the cutest baby ever. Instant love!! My brother Ed and his beautiful wife Kelly did a good job! If fairy tales are true this family IS The Fairy Tale!
All in all the trip was fabulous. Yes the hotel sucked, but I always make it through. The good, however, outweighed the bad; my teeth rock now and I got to hold my and meet my Nephew Max.
The week started on June 18th. We began our week long vacation to 20 Oaks Cottages and RV Park. We met my parental units in Fresno to break up the long drive. Hung out at the hotel Saturday night and left for Clearlake early Sunday morning. We arrived at Steve’s and my sister Kim’s park around 2 pm. This vacation was also a bit of a family reunion. I had not seen my sister Kim for 6 years or my cousins for 18 years. [since my wedding] We all did the hugs and introductions and all that mushy stuff then went to see the lake.
purdy
It turned out to be unusually hot for this time of year. [figures] The first two days I went outside and hung by the dock to watch my kids go tubing and swim. It sucked that I was not able to get to the boat or even get in the water, but watching my kids have a blast made it okay. The heat finally got to me and my legs swelled up something fierce. By Wednesday I could not go outside during the day anymore. So pretty much slept that day away. This trip was definitely kicking my ass… but it was a good ass kicking and completely worth it! lol
The Familyhaving a blast!my boy tubingSisters!
There are over 200 photos from our trip. It gave me something to do with my cool camera! lol
We left Thursday and headed back to Fresno for the Hotel stay. It was hard leaving the paradise that is is Clearlake, but we had to head home. We left the hotel early Friday for home. It was good to be home, but I missed my family.
BUT, my fabulous week was not over yet. My baby sister and her BF, Don, were coming to visit Saturday. This would be a perfect ending to a perfect week. I got to see my sisters and my brother at the lake and now my baby sister as well. We bbq’ and had salad and tasty asparagus and cookies and ice cream! YUM! We watched Battle Los Angeles. Basically it’s Independence Day with a few changes. Independence Day is a much better movie, but Battle LA gave us a few giggles. All in all it was a great end to a great week!
kids on a trampoline! lolLaura n me!
This week I am paying for all the fun I had, but it really is soooo worth it. My kids had a blast, hubby caught the only fish [was then released], got to see family, took pictures, and for the first time in a looooong time felt some ‘quality’ in my life! It doesn’t get any better than that!
We all know what this means. In a crisis we either fight or we run. Which would you do? Lately I’ve been running or rolling as it would be. And I’m not a ‘roller’! I’ve always been a fighter. And definitely not a quitter, which is also what I have been doing as of late. I know that the fight is inside of me. I was physically attacked many moons ago in front of my apartment building. I fought and the guy ran away. So, I know the fight is there, I just need to find her again. This is not to say there will be many days I want to quit, but I am looking for my little fighter again. I know that if my PPMS were a person I would have kicked the shit of out her a long time ago. Fighting the MS will be tricky as ‘she’ is not a tangible being. But when has that stopped me before?
Look out Bitch!!
The past week has been very rough and it is not over yet. Hands still shaking, legs still weaker than normal, transferring is tough, fatigue is kicking my ass. I’m still quite depressed, as being in this fucking chair is really getting old. The first thing I see when awakening is my chair and it is the last thing I see when I go to sleep. A HUGE reminder that I am crippled. I think it is so hard because I know what it is like to walk, to be able to go when I please, have Independence… ALL of which was ripped out from under me, literally!
I am hoping the ‘fight’ in me comes back. I cannot make any promises as I have no idea what each day is going to bring. I am terrified of going to sleep as I never know when waking if my body will have finally succumbed to the MS. Will I wake up totally paralyzed? What then? I know there will be days and blogs where my pain will come through like a punch in the face, so be prepared.
I only have myself and my inner strength to count on. I know I have family and friends, but this fight is solely up to me. No one can ‘fix’ my emotions but myself. Some have suggested counseling… sorry but talking to someone in high heels and who is healthy is NOT for me. I do not care how many books they have read or how many people they know in a wheelchair, they are not living it so they have no clue! This is FACT not fiction!
Well the hands are getting weak and my head is staring to nod, so I’m out!
But, before I go, good luck with the Rapture! I know I’ll still be here tomorrow as will everyone else. Well, maybe not the quacks that believe this, hopefully they will go! 😛
Those two words are not an option for me. I have three wonderful children that need me and a husband that loves me. So how does one deal with the emotions when their whole soul says, I want the pain to stop?
I wish I knew. Last night it felt like my bones were trying to some through my skin. I know no other way to explain it. My skin was crawling and my emotions were flying all over the place. What was I doing when this happened? Trying to go to bed. Yup, that’s it, just trying to sleep. WTF!!! Roger was trying his best to comfort me, dd#3 was scared and dd#2 was lying in bed holding on to me and crying.
I got so pissed. This MonSter isn’t only screwing up my life, it is killing my kids. I screamed at God, I screamed at the MS. If either were human in front of me, they’d be dead now!! If you wanna mess with me, go for it, but DO NOT mess with my kids. My faith is gone and nothing anyone says is going to change that for me. I believe in a ‘higher power’ but that’s it. And do not try and preach it to me… please. I’m no longer in the ‘politically correct’ mode. Okay, I never really have been, but now you’ll just piss me off.
I have no issue with the ‘believers’ out there. Keep it to yourself and we’ll get along fine. Push it on me and we will not.
I’m angry, I’m depressed, I’m fat, I’m lonely, I’m in pain [emotional and physical]. It’s not going to go away like the flu or a cold. I deal with it as best I can. I do not want to hear about that person with MS who ran the marathon, or any other success story. Not to be rude about it either, but they most likely have rrms and are in remission and have the funds to be able to do these things. I’m not and I don’t. I’m happy for them, but do not want to be compared to them. We are ALL different in our disease.
I am and have always been a fighter… MS HAS won the battle, but the war is still on!
I know there are times that maybe adoptees do not want to be found. I do not believe this is one of those times. I feel, in my heart, that he would love to know how missed and loved he has been for so long.
This is a New Year, one that I hope will bring a family back together. Siblings are the most important part of a family unit. Let’s help these sisters find this piece of the puzzle that has been missing for so long.
My son has drawn since he was a lil’ tyke. His teachers would always say, “You know right away which pictures are Austin’s, due to the talent of the drawing”. 😀
We purchased him a ‘How to draw Dragons’ art book 2 years ago and here are some of my favs.
The HatchlingMajesticThe Fae
This is his newest for school. They had to pick a character and draw it. My son has skills!!
School Project 2010
All of these are drawn with pencil and on 16×20 drawing paper. Not traced in any way. I’m very proud of him!
Making it Through the Rain 