*please do not remark on my shitty spelling in this post. I am aware of it but do not feel like the point of this post is good grammar, punctuation or spelling. It is intended purely to inspire, humor, dismay and spark support for me because my life is tough right now. Please do ignore the syntax errors and accept my apoplogy (haha, apoplogy…I like that one.)

I have been on hiatus. The last time I used the word hiatus my son asked me, “Who ate us?”. I have been pondering the brilliant idea of adding a section on this blog of mine calledLiteral Boy Corner. A page chock full of the musings of literal thinking Aspergerian adolescent children. Interesting tidbits that float past my ears, spewing through the mouth of babes…like the idea that if something is not evil, it’s not wrong. Or that there really is a sweet tooth or a c-section incision is shaped like a letter c. 

I am seriously thinking about it.

What has been going on with me? I have been in a sort of funk, not a fog but a mucky swamp of endless things to wade through. You know the saying people…when it rains it pours.

Last month things began to unravel for me on my birthday when I had my Bard Port A Cath implanted. It was more painful than I imagined, leaving me sore for about 2 weeks. The day after the port, my 2nd Tysabri infusion seemed to go well (minus a rash). However, the following 2 weeks my energy level which is already low became depleted and I felt  more exhausted than I had in months. I have been trying to lay low in a futile attempt to recover my energy and stamina. 

My 5 year old precious daughter Lilli cracked one of her molars on a Jolly Rancher Lolly Pop (NOTE TO PARENTS: do not allow your kids to eat these.) After taking her to the dentist, we were told the following:

1) the broken molar has to come out and they will put in a spacer.

2) she has developed small cavities between all of her molars in less than a year. They want to put stainless steel crowns on all 7 molars. That is not all, they want to put her under general anesthesia. She is not in pain, her cavities are NOT massive, they are just in a bad location to place a filling from what I am being told.

We did take her to a different dentist for a second opinion and even though we like him better, his treatment plan was pretty much the same, unfortunately.

Soooo….after days of research, discussion and prayers we have decided to get the broken molar pulled because it can cause an abcess if left in there. We have also decided to brush & floss her teeth after every meal & snack; deciding to wait until her cavities demand the aggressive treatment they recommend, which they do not right now, in our opinion. So, she will keep her natural teeth for the time being. We have just been in shock because we take very good care of her teeth, she has always had regular dental care and a healthy & low sugar (rare candy intake) diet. The dentist said her molars are very tight and that baby teeth are very soft but I still don’t get it. I also do not understand why so many dental practices do not allow parents in the treatment area. This ordeal has been an eye opener to say the least.

My same sweet Lilli developed a small blueish/blackish mole on her left cheekbone this past week. It is a little bigger than the size of the head of a pin, maybe 2-3 mm. It’s about 4 inches away from another mole on her jaw line. This past January & February I had 8 atypical moles biopsied. When abnormal cells were found, more biopsies were done to remove all the abnormal cells. I learned a lot about Melanoma, moles, skin care and when to get suspicious moles evaluated. I just never heard of a blue mole before! It isn’t like I am a paranoid mom, always on the lookout for reasons to be worried. So you can imagine, I’m very shocked to be seeing this on her face right now. She has an appointment tomorrow with her Pediatrician to get it checked out. Better yet, since my 6 month follow up with my Dermatologist is actually aright after her appointment (and ironically in the SAME building) I am taking her in the exam room with me to ask my Dr to take a peek at it. 

I have seen 3 different Dr’s this past month as well. An Ortho, a Uro and an Ortho Spine Surgeon. I have had catheters placed where the sun doesn’t shine, a shot under my knee cap, x rays and am having my 3rd Tysabri infusion done today. The jury is still out on my spine, with an MRI with contrast and a CT Scan with Reconstruction to be done  this Wednesday. The Uro doc said my bladder is working independently of my brain and he put on a med for overactive bladder. He seems to be stumped about the occasional retention issue but dilated the opening to my bladder which hurt like hellllll-o and has not really helped. Neither has the medication. 

As a matter of fact, right this minute, I am having my Tysabri Infusion at TN Oncology. I have had to pee 3 times in one hour and I have to pee again. MS sucks. I really do not want to have to ask the nurse to disconnect my IV again so I can go to the restroom. Plus I have the added bonus of being the only one out of 9 patients in the Infusion Center right now who has even used the bathroom in the past hour, let alone 3 times (soon to be 4). 

Aaaahhhh…that wasn’t so bad. I asked a different nurse. I cope whatever way I can ;0) AND I did not scan the room to see who was noticing I was using the bathroom…..again. I decided I do not care anymore. I can’t help it if my nerves do not communicate. Psychotherapy will not help these kind of communication issues. Tysabri hardly helps. Come to think of it nothing hardly helps.

Which brings me to the clincher, quite literally. A muscle clincher…

This past Saturday morning started off nice although when I woke up my left leg felt a bit stiff. I made breakfast, did my daughters hair all purty, got her ready for ballet class and then after she and my husband left I laid down on the floor to play Solitaire on the computer. I was lying on my right side when I decided I was finished with my game. I tried to move my legs to get into a sitting position but my left leg decided it wanted to do something differently. It began to spasm; contorting my foot into painful & unnatural L shape. It stayed that way for what seemed like an eternity but was actually about 15 minutes. About 5 minutes into it, I realized I needed help. I asked my 11 year old Kaine to go get my 15 year old Khy for downstairs. When he came up into the living room, I was crying in agony on the floor. I had him get the medication that I was prescribed a few months ago but I had not taken yet (called Tyzanidine). I immediately took one and my dear son tried everything he could to help me until the spasm went away. A pillow, trying to stretch my foot & leg (would not budge). Finally, my foot, leg and hip relaxed, my pain subsided and I called my husband in tears. I felt very shaken up. I then called my Neurologist. I  had the answering service page him. While I was speaking to the person with the answering service, another spasm happened. I could hardly speak or get the words out through my tears.

When my neurologist called back he told me he thought I should go to the ER. I asked him if the Tyzanidine helped, could I avoid a trip to the ER and see him on Monday? He said that would be alright if the spasms stopped. Well, need I say that I am stubborn? I do not like ER’s? I have 3 kids? My husband had to work that day? Chronic illness is not managed well in a ER? 

I had about 18 full blown spasms on Saturday. Some while I slept Saturday night, woke me up from a deep sleep & brought me to tears in the middle of the night. I only took one dose of the Tyzanidine after all because I became very dizzy and when I checked my blood pressure, it was down to the 70’s/40’s. At it’s best that afternoon it was 82/56. I called the pharmacist and he said to stop taking it immediately. Because I knew Baclofen worked ok for me in the past and I had a full bottle, I started it right away. By Sunday morning my spasms were isolated to my calf muscle & were painful but tolerable. I realized I would be able to make it until Monday. Whew.

Would you guess that they were late starting my Tysabri, so now I cannot see my Neuro until after he gets back from lunch? At 1pm? And my hunny has to leave for work by 1:20pm? I sure hope all this works out. Last week, he was late to work 2 times due to my health or Dr’s appointments. Guilt does not even describe how I feel when my helath impacts his job. Embarrassment maybe?

The good news is that tomorrow, at 8am my hunny is dropping off my car at the place to get the lift installed. Yes friends, family….cyber strangers…. voyeurs….efans….lurkers & supporters. I am getting my independence back…TOMORROW. 

WOOOOOOHOOOOOOOOOO!!!!!!!!!!!!!!!!!!!

Nothing else I am going through really matters when my future is as bright as it is right now.

The following is dedicated to my hunny for being my wheels, my lift, my salvation in such ridiculously trying times. I love you baby.