Figures, right? Another med bites the dust. I was really beginning to think this one may be the one. Not so much, My liver count went up more, 3rd month in a row, so now the Tysabri will stop. Wonder when the next miracle drug will come out? **insert sarcasm…
figures…
Why I tried it in the first place is beyond me. It’s mainly for RRMS [relapsing-remitting] not for PPMS [primary-progressive]. That’ll teach me to think a new med will work for me. Now we’ll see what the new game plan is; new med, try it again later. I have taught myself NEVER to get my hopes up, sadly this time I did not listen. I feel like I’m mourning a death of some kind. The death of a new beginning? I don’t know… Hopefully if I try another ‘miracle’ drug it will utilize my port. roflmao Now what… do I have it removed, keep it in just in case? Again, I don’t know. Not sure how many more medication let-downs my heart can take. It’s been six thus far. Fuuuuuuuuck, fuck, fuck!!
Not quite sure what to do with myself… hmmm my bed looks comfy…
I’ve been trying so hard to get out out of the ‘whatever’ mood I’m in. I’ve been blogging [duh], updating my jewelry shop[s], tweeting and pinning like a mad woman… but I just can’t seem to shake the blahs. I just wanna crawl under a rock!
hiding...
Tomorrow is the MSWalk2012 and I’m so not feeling it. My legs have not been cooperating. Even being in a wheel-chariot all the time the legs have issues. I’ve been getting the shakes, and from sitting all the time, serious ankle swelling. Not liking ‘kankles’!! 😛 Kind of sucks when you have to sit and then you get issues from it. **SMH** It hurts when the legs swell and embarrassing when they just start shaking all over the place. Hubby calls it ‘the rhythm’ and always asks if I wanna dance! Dork! lol I’m fighting between dealing with pain and embarrassment, to the guilt feeling of not going. My team, Tracy’sMSkateers are the best. They had a big ole bake sale at NBC/Universal yesterday to raise money for our team. Think they raised over 1000.00!! Woot Woot! I feel like if I don’t go I’m letting them down. I really want to go, but really not a fan of pain. I even bought a cute orange shirt for the walk…
I’m going to confess something I have not really touched on in the past. I hate me! I really do not like going out in to public due to the all the weight I have gained since being in my wheel-chariot. I was once tall [6′] and skinny. Now I’m short [4’4″ in my wheel-chariot] and huge. I have gained almost 60 pounds and I hate the way I look. I try to keep away from mirrors as I get depressed. I will take responsibility that I sometimes eat what I shouldn’t, but most days I eat right. It’s so hard to lose weight when you are immobile. I’m embarrassed by my weight, and prefer hiding out at home. I know the extra weight is not helping my MS either. It truly has nothing to do with what others think… it’s all about what I think. So in a nutshell… I hate what I have become.
In my head I do not ‘see’ myself as crippled. I just see me. Unfortunately there are little issues that pop up to remind me.
Next week we are heading to Carlsbad/San Diego so I can go see my Uncle, the dentist. Finally going to find out what’s happening with my painful mouth. We usually stay with my parents in Carlsbad at their home, but it can be rough for me with no ‘crippled’ access. Roger and I decided we would stay in a hotel nearby with the roll in showers and accessible rooms. We had stayed at the Hampton Inn Carlsbad once before and it was perfect. Now, here’s where the fun starts. I called to make a reservation making sure I could get a roll-in shower room. They said they were booked for those rooms on those dates but had an ADA bathtub room. I explained that will not work for me and he said to try the hotel next door, the Homewood Suites by Hilton. Okay, cool. I thanked him and called. The Homewood Suites had no availability for these rooms either so he said he would call the Hilton Garden Inn Carlsbad. By now I’m feeling a bit nervous and stressed and crippled. All this to get a hotel room? I figured 3rd times the charm, right? Wrong!
The Hilton Garden Inn had roll-in shower available rooms. Woot woot! Not so much. Now we could pay for and ‘reserve’ this room…but…they can not guarantee we will get the roll-in room. Ummmmm, what? I’m paying for the reservation [reserving] the roll-in room, but you cannot guarantee it. WTF! Basically, we can pay for it, but once we get there is may not be available and we will get an ADA bathtub room. Now I’m not only confused but getting angry and tearing up. I ask the guy why the other hotel has the rooms and also has them reserved for the people. [why I couldn’t get one there] He’s sorry but there will be no guarantees for the roll-in room. I explain that if we pay for it and it is not available that I will need to cancel and get my money back so I CAN find a hotel with the room I need. He explains that no money will be refunded as it’s a two day cancellation policy. I then explained that the ADA will not be happy to hear about this.
After a few no so nice, yet adult like comments, I hung up. Wow, I can’t even get a hotel room… I really am crippled! Fuuuuuuuuuuuuuck!
I call my parents and burst into tears explaining what happened. After a few minutes, I calmed down, [thank you Cheryl] regained my composure, and realized I can tough it out for two days in their house. It’s just the bathrooms that cause me stress.
Now that I was composed, I noticed there was a Marriott nearby as well. I figured, maybe the 4th time is the charm and fuck Hilton! 😛
Dialing the number, crossing everything, I call The Courtyard By Marriott Carlsbad. [oh please, oh please] My first question to the sweet voice on the other end was, “Do you have roll-in shower rooms?” She says yes. My second question was, “If we reserve one, will we be sure to get one?” She says yes, they will reserve it and put a block on that room for me!!! HALLELUJAH…HALLELUJAH Really, I heard music! So this lovely girl made our reservations, blocked the room, and instantly sent me a confirmation.
Marriott - a crippled persons dream! :p
My stress was lifted, my spoons replenished. I will NEVER deal with Hilton again. They may be and have accessible rooms, but they are NOT cripple friendly. Marriott, you are my new love, Thank You!!
Well, I’m still here. Not in a blogging mood lately. Hard to type and I get so jumbled that nothing comes out right. I’m just glad that I’m fantastic when it comes to ‘acting’ happy. I’m so tired of all the, ‘life is good’. ‘you are in control’, and blah blah blah. MS took away my ‘control’. Please don’t tell me it could be worse, as it is getting worse. I’m sure others hate their illness just like I hate mine. I think boredom sets in and i get depressed. Unless you live in my ‘chair’ in the prison that is my home, you cannot understand. Being trapped like a caged animal is paralyzing…
I know some of my friends know this feeling as they are in the same boat as me. I try to find the good and be upbeat. I can tell you that it takes a ton of energy to do that. I’m so tired of fighting this battle.
that be me...
If I sound bitter, it’s because I am bitter. Life is NOT good… no always. Some of us fight struggles that no one can ever comprehend. Those are the ones that usually say ‘it could be worse’. **F bomb alert** Well fuck them. Their biggest problem is a job they hate or the sniffles. If I sound bitter, it’s because I am bitter. And as for prayers, do NOT get me started. My girl Ruby and I were told if we prayed right we would be healed!! Well hot damn, I’m on my fucking knees. I have no problem for those why want to pray for me… just don’t be surprised when it doesn’t work.
Hopefully this’tude’ will pass soon. It usually does. But, I’m not going to feel bad for being pissed, angry or bitter anymore. There are some that make me feel like I should just ‘get over it’! To you I say, ‘Let’s trade lives.’ To anyone out there dealing with chronic illness and any of these feelings, just know it IS ok to feel this way and vent. Do not let anyone make you feel bad if you do. Until they walk, err roll, a mile in my [our] chairs they can just STFU!!
“Be glad you are not in a wheelchair due to a car accident or the like. There are many paraplegics in wheelchairs because of this. This is something they did not ask for.”
This was in response to someone in a wheelchair due to illness. I was like WTF! Are you insane or just ignorant. This person needs a lobotomy… or maybe they have had one already. Do they think we asked for the illness that put us into a wheelchair? I feel as awful for those in accidents as I do for myself and others with a crippling illness!
Really people, think before you open your stupid mouth!
The video explains the peril that Halfway to Home is going through.
I have personal experience with this rescue. My good friend Courtney is a volunteer and two of my ‘fur-kids’ are HWTH rescues. If not for Suzanne and her NO KILL rescue, they would have perished either on the street or by the High Kill shelters. I can not imagine life without them.
Dexter and Charlie, my babies!
The dogs at this NO KILL shelter are taken care of with the highest level of love and compassion. They are clean, well fed, up to date on shots, and always spayed or neutered. This is a travesty of justice.
This rescue, Halfway to Home, helps the County and State by taking some of the burden off of the High Kill Shelters. HWTH is a highly respected rescue and has been a #1 rescue at PetSmart. I am so confused as to how and why anyone could NOT renew their permit. It sickens me to think of all the dogs that will now die in the streets or in the shelters due to this irresponsible decision. I truly hope this decision is re-thought out and that their permit is renewed. How anyone with a heart could do this is beyond my thinking. All I have to do is look into my HWTH rescue dog’s eyes to know this non-renewal decision is truly wrong and inhumane. Is this really what Kern County wants to be known for? I hope not…
Please share the video above, donate to Halfway to Home, let these amazing people and doggies know they are loved.
Click the logo to go to their site!
THOSE WHO WANT TO DO MORE are urged to e-mail a message to The Animal Control Commission at animalcontrolcommission@co.kern.ca.us. Lorelei Oviatt, Director of Planning & Community Development Department at LoreleiO@co.kern.ca.us. Scott Denney, Planning Operations Division Chief at ScottD@co.kern.ca.us. Lorine Vasquez, Planner 2 at VasquezL@co.kern.ca.us.
Saw this on FB and it is how I feel most days. In my dreams I am able bodied and walking friendly. Then, I wake up. This past Friday showed me how crippled I am really am. I HATE my wheelchair but realized it is my life now. On Friday I was getting the laundry ready, turned on my WC, and nothing but blinking lights. I kept turning it off and on like a mad woman, and the same thing happened over and over again. I was completely screwed! Stuck in my room with no way to move. As the tears slowly slid down my face I looked up at whatever higher power is up there and quietly asked, WHY!? At that moment I realized how dependent I am on my WC and it is my only independence, if you can call it that. Then the anger hit and the quiet why turned to an angry why. I had no way to move myself and get from where I was. My son was in his room with his ear buds in and could not hear me cry for help. My girls were not home from school registration yet and I had no phone to call anyone. After 10 minutes or so the girls got home and unlocked my wheels so they could roll me out of where I had been trapped. This is my life, my nightmare!
fear...
So I ask… If I squeeze my eyes shut and open them again, will I finally wake up from this nightmare?
Making it Through the Rain 