Doctors, X-rays and bloodwork oh my

Been awhile since my last update. 

I feel like there is so much to get done but I don't have the leg muscles to do it! 

All travel arrangements of the mood have been arranged, part of which paid for and  now just need to pack. 

I rejoined weight watchers in a desperate attempt to lose some of this weight I've gained from the steroids. I've been trying to make good choices but I feel like it's hard in this house when my ribs kill and doing the stairs are a nightmare. 

First week down 4.4 and now let's hope I can keep this rolling! 

Since I'm currently not drinking it will be easier (hopefully). 

So I had a few appointments on Friday. 

First up was my neuro.

I went in with my list or questions as I normally do. 

The list was shorter than usual but I felt a little ridiculous asking my doctor about smoking a joint. 

Her response was quite funny as she said she wouldn't do it, it wouldn't help the neuropathy but certainly a lot of people try a lot of different things for pain.

She said she wouldn't do it because it would make her feel clumsy. 

My verdict is still out on this subject. 

I spoke with her about melatonin and she cleared it as Ok to take with my other medicine. I have certain nights that I just cannot sleep. The medication I have is actually for anxiety and I hardly ever take it. Usually I feel hung over the next day if I do and I don't like that feeling much either. 

The other subjects were in regards to the new doctor I will be seeking out in Michigan. She looked at the website and the doctors that I had found on the gbs-Cidp website. She said the facility looks great and it seems like they specialize in CIDP. 

Then onto the not so good news. 

She doesn't think my Imuran is working as well as it should be. 

While my muscle strength is increasing my sensory loss hadn't improved at all. 

She gave me a list of a couple things she thinks I should discuss with the new doctor.

Both options are IV given and chemo drugs. 

One (cytoxan) has been linked to serious bladder issues, hair loss and organ damage.

The other (Rituxan) has been linked to some very serious virus that can effect your brain. PML I believe it was called. 

I guess the virus already lays dormant in like 2 out of 3 people. She said you have to be monitored very closely while receiving this. Which would only be once every 6 months. But I did ask in my Cidp group and there's been a few people who have received great results from this. 

I'm so torn because I don't want to keep on this slow boat of healing if they don't think this is going to get me any better, but at the same time chemo drugs have serious side effects and I am feeling kinda meh about those side effects. It doesn't help that google gives you all kinds of information that you probably don't need and it makes everything seem incredibly more scary! 

Next appointment was in regards to my ribs. The doctor thought I possibly had a cracked rib. Which lead to an xray, but everything came back clear. Ribs are just bruised/strained and I'm told to apply heat. 

PT was cancelled due to the harness/treadmill thing being broken.

Then I had blood work.

I was hoping my liver enzymes would have gone back down but it seems they are up again. So now I'm waiting to hear back from neuro in regards to this. 

It could be from my Imuran but I'm not entirely sure. 

I've been starting to think of some fundraising techniques to use in order to raise some money to cover my medical expenses since I am still out of work.

My friend Nicole suggested using go fund me and I started a page. 

http://www.gofundme.com/83b4fw

I am surprised and blown away at the generous donations I have already received! It's so crazy to feel love and support from all over the country. :) 

I also have a few friends willing to donate some stuff for raffle if I have an actual event, which I am seriously considering. 

I think later this summer I'm going to have tshirts to sell as well. I'm hoping that all these endeavors will help pay for my medical stuff at least for a little while. 

I've been thinking good thoughts about my SS trying to will it to happen mostly. 

My friend Cyndee told me I can make it happen so I'm really trying! 

Yesterday was a pretty great day. 

I walked from the car all the way to the handicap ramp, which was pretty far! (With my walker that is) 

The dentist was kinda torture since my teeth have become so sensitive from steroids and they use this water cleaner thing here and yikes! 

But 0 cavities! :D 

The dentist did imply my teeth were crooked and I need liners for the bottom but I declined. Who has the money for that? Not this girl! 

The hygienist that cleans my teeth is nice and i know she means well but she asks me every time all the same questions about my disease. Lol she told me I could get help from the government to have someone come help me shower.

I left the dentist cleaning room and walked to the front desk again before sitting! Yay legs !! 

After the dentist we headed over to Aquis for lunch and I had my usual goat cheese quesadilla!

We ran into Cyndee and her friend Andrea? Was nice to see her it's been awhile! 

After we went to Bevmo where I got some ginger beer as well as a gingerbread beverage to try as well. 

Ended our day with some yogurt from willow glen yogurt company and headed back home. 

All of the above I shall miss greatly when I leave this town in a few short months. 

Last night I went through some Halloween stuff and sorted my stuff from Andrews. One more tote to add to my Uhaul box! I was feeling particularly exhausted perhaps from the lack of steroids in my body, the fresh air, walking or the journey back to the stairs. 

Regardless I passed out right in the middle of an episode of Hart of Dixie around Midnight. I woke up after 2 and turned off as the tv as it was so nicely flashing "no video input" as the Apple TV had shut itself off.

Sometime after 5 toast woke me up and again at 7. Then I slept until 11. 

Today wasn't such a great day. Nothing in particular happened to make it that way, just incredibly tired and sore. It's not just like normal muscle sore either! It's that plus intense tingling on top of it. Think of how it feels when a limb falls asleep. Now think of that feeling intensified by 5. And it's both feet and lower leg along with both hands. 

Needless to say I wasn't up for doing much today so I stayed home with my fur babies. 

I hoping that tomorrow I wake up and feel top notch!

I will try and keep this updated a bit more! 

Hope you all are well!!

Xoxo