Thursday, August 28, 2014

The Good, the Bad and the Ugly


I didn't get much of a workout in yesterday. It was still quite hot and muggy in the morning. I ended up only working half a day yesterday.  Thankfully, a thunderstorm moved through in the early evening cooling things down considerably.  My husband was going to run with my niece and my sister asked if I wanted to walk with her.  I can't say that I really wanted to since I have been fighting heat/humidity induced fatigue and pain (more on that later). However, I didn't want to be left out - I will use most any excuse to hang out with my family :)


My sister and Moose


My sister brought Millie's "cousin", Moose, on our walk. Oops!  I guess I should have brought Millie :(  Moose is a Great Dane mix. He is a pretty good dog despite his issues.  He is seriously obsessed with his toys and making you throw them for him.  His tail is an issue.  Yes, his tail - in his excitement he can really wield a painful whop on your legs with that thing. When we got Millie I was a little worried that she might have similar tail issues (her tail was not docked like most Rottweilers). It has been fine though. My sister would say that it is because we are usually at Millie's head so we aren't in the tail danger zone.  She might have a point, but when Millie is looking at my husband I have been her in her tail zone. I just don't think her tail is nearly as strong or active as his :) 




To be honest, I did not enjoy the walking part - chatting with my sister, yes - walking, no.  We didn't walk quite a mile and I was done. We sat on the porch swing and waited for the runners to return.


When I started this blog I said I wanted it to be accurate representation of the my weight-loss journey, which as we all know is a reflection of our lives. Therefore, I need to be willing to share the good, the bad and the ugly.  Here goes...

This is my ugly.  In April of 2008 I woke up to find that my left arm was numb yet tingly.  Kind of like when your foot falls asleep and then starts to wake up. I thought I had just slept on it wrong.  After a day of no change, I started to get scared.  Then another day later, I finally told my sister and began the process of trying to find out what was wrong with it. I went to an urgent care clinic - pinched nerve. Went to a chiropractor - hated it!  The little voice in my head was not convinced it was a pinched nerve. Went to an ER at one of the major hospitals - possible diabetic neuropathy.  I am not diabetic.

I didn't have a doctor at the time. So, I just found one in the phone book - well, actually it was probably online.  After my first visit, she ordered an MRI.  I did my best to get info out of the MRI tech.  He ended up telling me that I seemed to have a bulging disc. Okay.  However, the actual radiology report said nothing about a bulging disc. Instead, it said possible spinal cord tumor or lesion consistent with Multiple Sclerosis. To be honest, my Googling had already made me worry about MS, but until the MRI nobody seemed to agree with me that it was a possibility.

Next step, referral to a neurologist.  The neurologist admitted me to the hospital for a three-day diagnostic adventure. It included plenty of poking and prodding - MRI, Cat Scan, spinal tap, blood tests...blah, blah, blah. I will say the spinal tap was my very least favorite thing EVER. In an attempt to minimize the symptoms, I was put on a 5-day course of IV steroids. A home health nurse trained my sister in how to attach the IV to the port they set up in my forearm. The IV phase was followed by a couple weeks of oral steroids to taper me off the IV steroids. Beware of 'roid rage!

Finally, on my birthday in 2008, the neurologist breaks the news...everything is consistent with Multiple Sclerosis...lesion on my spinal cord, a couple lesions on my brain, oligoclonal bands in the spinal fluid, physical symptoms, etc.  However, at this point, since there is only one documented episode they can not definitively diagnosis it. She recommends a "disease modifying" drug - because of course there is no cure.  The purpose of the drug is to slow progression of the disease. The medication is an injection I have to give myself every other day - not a fan!

Over time, more MRIs, new neurologist, etc. the official Multiple Sclerosis diagnosis is made.  Incidentally, it was the first time my husband (then boyfriend) took me to the doctor.  We had been dating just about 6 months.  There was lots of crying.

This is my bad.  The initial symptoms for the most part remain with me.  My arm always has an odd feeling. It is super sensitive. My hand always has a prickly sensation that distracts from my fine motor skills.  For example, the sensations make it difficult for me to identify items in the bottom of my purse (the abyss). It can be very frustrating. Additionally, I have spells of numbness in my legs.  I frequently have a significant level of pain throughout my body.

I am very sensitive to weather changes, heat and humidity. I will have episodes in which my symptoms are more pronounced - I am exhausted, I am depressed, I ache everywhere, etc. I have been spoiled by a relatively cooler summer this year.  However, the recent heat wave and ridiculous humidity have me in the middle of an episode. I am currently a bit more frustrated because I don't want it to derail my weight loss.  About the only thing I can do is to rest and wait it out.  In the meantime, exercise is tough or non-existent and when I don't feel well and/or depressed I want to eat everything...and I feel like I have eaten a little bit of everything this past week. 
 
I struggle with the "invisibility" of my disease. For the most part, no one can see when I am struggling. I wonder if they think I am just being lazy or making up lame excuses. Perhaps this is part of the reason I am sharing this on the blog. 

One of the hardest parts for me has been feeling like there is a cloud following me around just waiting to unleash a major storm. With MS every patient is different and it is extremely frustrating that doctors can not give you an actual prognosis.  Will I continue as I am forever or will I lose my ability to walk or even die from complications?  I remind myself that no one has any guarantees - that doesn't always make me feel better.


This is my good.  Physically, I am in a relatively stable place and my mobility is good. Despite flare ups of my initial symptoms, I have not had any major changes or significant new symptoms. My most recent MRI showed no additional lesions :)  Everyone has their challenges and this is mine. It could be SO much worse.

This is my great.  (I decided to add this because "good" just didn't seem enough.)  First, my sister was an amazing support to me during the whole dramatic phase of this ordeal and continues to be during this less dramatic phase.  Second, I found the love of my life and he didn't run away (at least not fast enough that I couldn't catch him) when he found out about my diagnosis. At 40, I had never been married and was quite convinced I would never find "the one".  The MS diagnosis seemed to seal the deal that no one would ever want me. Guess who was wrong???  Me. 

Yes, I realize that my good and my great are so much shorter than my bad and my ugly.  I think my regular readers have seen the good and the great in my day to day posts. This particular post is intended to reveal my bad and ugly.


11 comments:

  1. Awww. Gosh I'm so sorry you are dealing with this. But. Good days happen and bad ones do too. Here's to a lot more good than bad. (((HUGS))) I have an "invisible" one too. I have a blood clotting disorder. It doesn't really cause any problems other than the vein damage from the DVT's cause my legs to swell all the time and I have to wear compression stockings. But other than that and the coumadin, I'm in good hands and have had no major problems or clots since 2008. Apparently we both had bad stuff happen in 2008 and we are both 40. :)

    ReplyDelete
    Replies
    1. Yes, definitely more good than bad to you too. I have to confess...I was 40 when I met my husband...5 years ago. No more 2008s for us :)

      Delete
  2. *hugs* I am so very glad that you have a wonderful support system. Can you do things like swimming? Would that be easier on your body since the water is generally cooler? I'm sure it has been recommended to you, but though I would just throw it out there.

    I have a friend with RA and fibromyalgia. It's a bad combo. She gets extremely frustrated since they aren't the most visible of diseases. Just know that there are a lot of people like you out there with "invisible" diseases and lots of us who have your back :)

    ReplyDelete
    Replies
    1. I have done some swimming - at least doggie paddling. I keep telling myself I should take lessons. Thank you for being so supportive.

      Delete
  3. I'm so glad you revealed your ugly... its a challenge and something you have to deal with but you certainly dont have to deal with it alone.. I am so glad you have your sister and your wonderful husband .. but dont forget about the invisible friends you have too :) Whether readers, or other bloggers, or just someone who stumbled on your writings.. there are people who are here to encourage you in all aspects of your journey and maybe some who know what you are going thru .... keep your chin up and keep doing the best you can... thats all any of us can do .. ** big hugs **

    ReplyDelete
    Replies
    1. I have come to appreciate my new "invisible" friends. It gives new meaning to "online community" for me.

      Delete
  4. Wow, this is such a well written post, I have tears in my eyes. One of my friends was diagnosed with MS a few years ago and it's so hard for everyone to understand because of its invisibility. Thanks for this eye-opening post, definitely sharing it!

    ReplyDelete
    Replies
    1. Thank you. It is hard when no one sees it, but she is lucky to have a kind friend like you :)

      Delete
  5. HUGS a million times over! Having a support system, especially finding one after your diagnosis, is the best. I love your husband even more for not letting something like that scare him off. He's a good guy and he's lucky he has you. YAY for the both of you.

    You are a rock star with your weight loss and walking and doing all the things to be as healthy as you can be. I am beyond impressed, lady!

    ReplyDelete
    Replies
    1. Thank you :) He is definitely a keeper!

      Delete
  6. This was a tough read about your discovery that you have multiple sclerosis. I have done a multiple sclerosis walk in the past to raise money for research, so I know a bit about it and the challenges. Don't let people doubting your struggles get you down. It helps to educate people or tell people about a resource they could look over so they might understand more what you're going through. Hang in there and stay positive!

    Dot Eastman @ U.S. HealthWorks Stockton (East)

    ReplyDelete