Living in the land of the f*cked

Medically anyway. I am done with being nice and not swearing. I am done with watching what I say. If you are offended, then I am sorry, but I am so done with medical shit that I just want to scream.

Cheryl and I met with the neurologist on Tuesday. I had to take 2 days just to settle down from the visit before I could even put word to paper about it. So, do I have MS or don't I? Who the hell knows. The asshole MD (and he was on the highest order of assholes) wants to do 3 more tests before we get a definitive diagnosis. He was cocky (come on, you can move those toes harder) and a real jerk (those are Cheryl's words). After he did my work up where you can see that the left sided weakness is very pronounced, he tells me that he wants me to have a closed MRI of the head and neck with contrast. You might as well bury me and give me a straw to breathe with because that is what a closed MRI feels like to me. He snottily said, "Well, we'll just do another open one" real disgusted like. Goes on to tell me that I need to address my anxiety with my MD as though it were his damn business. When he got to the it's how you deal with it in your head and mind over matter stuff, I lost it. Crying lost it, snot running down my nose and sob lost it. Cheryl just took me in her arms and told him that we would schedule the test (which we never did find out why he wants to do them of what he is looking for) because he beat feet out of that room as fast as he possibly could. Oh wait, first he threw a prescription at me for valium for the MRI.

So, I told Cheryl here's the deal, I will be in charge of this MRI. I will tell them they can put me in for 10 seconds and then pull me out and then I will tell them whether we proceed or not. Someone did tell me that they can sedate me and since I will already have an IV in for the contrast they can just send some happy juice my way.

Anyway, I don't have any answers. Just more damn tests. My poor body feels like it's been put it through the ringer and just keeps getting rung out. That my dear reader, is why medically I feel as though I am living in the land of the fucked.

My angel....

Is there anything sweeter than watching your child while they sleep?

Being thankful....

Our dinner table starts this post off with what I have to be thankful for....



It's really easy for me to think that I don't have much to be thankful for given the recent events around my health. But that simply wouldn't be the truth. I have much to be thankful for. I am blessed with the most amazing family ever. Starting with a partner who is always there for me no matter what. When we married, we took vows that we both take very seriously. I am grateful beyond belief that I have partner who not only loves me, but loves the me that continues to evolve into someone that we have no clue where I will end up. Cheryl, for that I am grateful. I am thankful for the 2 beautiful, smart and just perfect children that I have. My girls are as different as night and day and I marvel everyday at the gifts that they bring. Even when I am as frustrated and at the end of my rope as one can be, they give me the gift of stopping, and turning around and starting over again.

I am thankful that I have found a spiritual life that sustains me. I know that I came back to God at a time when I would need Him the most. I can honestly say that I haven't once felt angry with God for the medical stuff thaT is going on with me. God knows what I need. I simply need to stop and listen to what He is telling me. And keep faith that He does indeed know best.

I am thankful that I have life. As much as I grouse about how hard things are I do have a good life. I live in a nice home that has heat in the winter and central air in the summer. We have 2 cars that run each with car seats that keep Katie safe (thank you Estelle - how we'll ever repay you, I don't know). We have food in our cupboards and a beautiful and safe yard in a neighborhood where our family is accepted.

I am thankful for all the online friends that I have made. Friends that have pulled us through some of the toughest times of our lives. They continue to give and give from the generouseness of their hearts. I know that should the tables ever turn, I too would give what I could to someone who needed it. I am thankful too for my IRL friends. No one in this world should ever have to go through life without friends and I have to admit that I have some of the best.

So, thank you to everyone who has written me words of encouragement, kicked my butt when I needed it and gave me hugs when I needed them.

The next few months are going to be rocky. Getting through Christmas, then the back surgery will be daunting, but as long as I know you all have my back, I know that I will make it through.

Thank you all! I appreciate you all for all the gifts of love that you have given me and my family.

Strong and beautiful

Gillian is in rotation now for her black belt. She should be testing in June! Here she is. She's not only beautiful and smart, but strong as well!

Still here!

I am going to make this a quick post since I have been trying to post for days but blogger doesn't seem to want me too! I was working on a post of Gillian @ karate, but it kept eating it.

I had the appt. with the surgeon and he agreed with all the other MD's that I needed to have the surgery. My only other option is to keep on with what we are doing which is taking all the high dose pain meds and I don't want that! So, here's the low down. The surgery would be about 4 hours long and because it's a high blood loss surgery, I would have to donate 2 pints of my own blood back to myself before the surgery. The surgery would be a 5" incision in my back, with them then putting mesh w/ bone between L/4 & L/5 and L5/S1 depending on what he finds when he opens me up. He would then put in 6 bone screws and the take more bone and then put more bone on the sides of the spine for more stabilization. The bone would come from my upper pelvis. It's 3 days in the hospital and then 4-6 weeks recovery. He said I would be up and walking the next day and the only thing that I couldn't do during recovery is drive. He said that I could still do things as I felt able which was better than I thought. Some of the stuff I had read made me think I would be immobilized for weeks. He did say he expected about a 75% reduction in pain and symptoms.

So we are still discussing it here. I have an appt. with the pain clinic to see what they have to say about managing the pain. Someone told me about an intrathecal catheter that they put in to manage pain. I do know that it would be probably just delay the ineveitable.

Anyone who reads me ever had this surgery or knows someone who did? Please write to me (or ask them to write to me) about outcomes. I don't want to end up a cripple, but I do want to be able to live a producitive life again!

In other news, I started selling on e-bay under the name of gandksmom1967. It's mostly Katie's old clothes, but I am going to be selling some of her slings and old video's and such. I will also be posting some of Gillian's old clothes that are in good condition. She was/is into South Pole, Addidas and Nike. Hopefully I will make a few bucks anyway!

If I get a chance tomorrow (or later today) I will do that post about Gillian and Karate!

Katie's new dress!

My friend Lisa made this dress for Katie! Isn't it adorable? Or maybe it's the kid? Nah, it's both I think!

Katie's favorite blanket!

Katie sleeping with her new blanket!






Isn't it beautiful? If you would like one too, check out Kristen's Web Site and she will make one for you too. This blanket matches Katie's Dora comforter exactly. The other side if the blanket is plain, didn't think to turn over a corner to show. But it's warm and Katie loves it! Thanks again Kristen!

Christmas Meme

Here ya go....now you try it!

1. Egg Nog or Hot Chocolate? Egg Nog


2. Does Santa wrap presents or just sit them under the tree? This is an interesting question for us. When Cheryl was growing up, they were unwrapped, when I was growing up, they were wrapped. SO, we keep going back and forth about what to do. I always wrapped Gillian's presents, but since we met when Gillian was 7 she didn't have a say in it. Now that we have Katie and Gillian doesn't believe in Santa, we have another decision to make!


3. Colored lights on tree/house or white? Colored


4. Do you hang mistletoe? Nope....


5. When do you put your decorations up? If it were up to me they would go up the day before Christmas and down the day after (scrooge). Cheryl likes to start a week after Thanksgiving and take down a week after New Years.


6. What is your favorite holiday dish? My mother's stuffing. We make it with potatoes.
7. Favorite Holiday memory as a child: All of us sitting around my Grandparents table eating Christmas dinner.


8. When did you stop believeing in santa? I think someone blew it for me early on, but in our house we had NO money and I think I thought if I stopped believing in Santa then I wouldn't have ANY presents so I "believed" in him for a long time!


9. Do you open a gift on Christmas Eve? I want to do this. And have it be pj's that we would all wear on Christmas morning (I love those Hanna Anderson ones) but Cheryl say's no.

10. How do you decorate your Christmas Tree? We put it up and then we all take turns hanging decorations on it. I usually take pictures while we are doing it.


11. Snow! Love it or Dread it? Living in Upstate NY where we get easily over 150" a year and usually over a foot at a time, I HATE IT!

12. Can you ice skate? Not since I had my ankle reconstruction surgery :)


13. Do you remember your favorite gift? Getting contacts when I was in 10th grade


14. What's the most exciting thing about the Holidays for you? Watching my kids and all the wonder that is Christmas. I love that Katie believes in Santa and the magical wonder of her thinking he is coming on Christmas Eve. Since we have started back to church and I have reaffirmed my relationship with God, I love celebrating Jesus's birthday, recreating the story of his birth and the magical mystical wonder of that night.


15. Whats your favorite holiday desert? Pumpkin Pie


16. What is your favorite holiday tradition? Leaving cookies cookies for santa and some reindeer food. Reading The Night Before Christmas before the kids go to bed and the kids getting up early to open presents.


17. What tops your tree? Father Christmas


18. Which do you prefer giving or receiving? Giving


19. What is your favorite Christmas Song? O Holy Night

20. Do you like Candy Canes? Not really!

Thanks Chuck, Renee and Christopher

Yesterday the fed ex woman came (shh...don't tell the wife that she was cute)oh never mind, she reads me and will find out! Anyway, she came to the door and said to me, "Is it someone's birthday?" I mentioned that my birthday was in a few days and she said, "Well, someone must really love you, because these flowers come from the best of the best". I was thinking to myself that it was strange that Cheryl would send me flowers this early before my b-day. But I opened up the box and there were the most beautiful tulips that I have ever seen and they totally made my day!

I have gotten so much offers of support it's amazing. I am sure that when the going gets tough, we'll call in those offers. I told everyone at staff meeting today what was going on and that I was sticking to working the one afternoon that I was doing and again, folks were so wonderful and supportive.

Now, it's just getting through. But when you have that many people behind you, how can you NOT?

Thanks everyone....but especially to my BIL, SIL and Nephew for the beautiful flowers!

New pics!

After yesterday's post, I thought I would send you all some pictures. First is Gillian's school pic. Then we had our family pic taken for the church directory. So....I introduce you to my beautiful family!

MS

Yep, it's been confirmed. I have MS. Let me walk you through my last 2 weeks OK? 3 weeks ago Monday I woke up throwing up. I think I even posted as to how wonderful my DP (dear partner) was to hold the puke bucket. I never really recovered. Kept feeling sick to my stomach, throwing up, and just not feeling well. So, on Thursday last week I had an appt with the MD who did my discography. I go in, pay my $15 co-pay only to have her tell me that yes, they replicated the pain on disc's L4/L5 and L5/S1 and the fact that the cortisone helped for a few days confirmed for her that I have degenerative disc disease in those disc's. I asked her what that meant and she said that I had to meet with the surgeon. Now, I am feeling crappy, about to cry because I just spent money I didn't have for her to tell me information I already knew and I said, "Wait, tell me what this all means". I have arthritis in my spine in that area and I need spinal fusion surgery says her. She rambled off some of the options but I really don't remember what she said and I left with an appt for a consult with the spinal surgeon in her office. I have heard from several people that he is a good surgeon, but I will be getting a secong opinion!

So, Friday I had a regular appt with my primary doc. I go in and he tells me I am not looking good and I tell him that I have been sick for almost 3 weeks and he thinks it might be diverticulitis since I have some pain. Now, I have had that before with different symptoms, but to humor him, I go to the ER. Before I leave there, he tells me that the MRI came back confirming the MS diganosis. He went into a bunch of scientific goblydygook, but all I heard was MS and already feeling miserable, I just wanted to lay down and go to sleep.

So, I call Cheryl and she meets me at the ER since I had Katie with me. It takes them 6 tries to get an IV into my dehydrated body. They do a CT scan without contrast because there was no way I was keeping that stuff down, but no diverticulitis. I meet the best ER/hospital MD ever there! He tells me that he thinks that because of all the vomiting I haven't been keeping enough of my narcotics down and I am feeling some effects of withdrawls. So, they admit me, give me a few doses of dilauad along with my regular narcotics and boost me with fluid and the next day I am much better. I go home and have been home since.

So, now I have to deal with these issues of impending scary spinal surgery along with the DX of MS. I am scared. I am sad, mad and every emotion in the book. I won't know more until I meet with the neurologist. My MD says there is a great one, but he's afraid she's booked out. I am waiting for their call with the referral. So far my most worrisome symptoms are short terms memory loss. Cheryl tells me I am asking her things over and over again a lot. I forget words easily and it scares me. What makes me the saddest is the vision problems I have with my eyes going wacky on me. I am no longer reading 6-7 books a week, more like 1 if I can get through it. This is a tremendous loss to me. I love to read. Gait is still off, but not so much that it bothers me or that I think people notice. No falls, but a couple of near misses.

SO, that's it for now. I am trying to move from a place of fear, and some denial to a place of power and taking over the MS and not letting it take over me. You'll be hearing much more about this in the weeks to come I am sure.

Hold on folks...it's going to be a wild ride!