I totally want the cane with the built in lights!

Ok. So you never really know what you are going to get to read when you open up this blog. Please know that I speak fluent sarcasm, and so some of the things I say are solely sarcastic in nature. Sarcasm helps me cope. Jamie is the same way. Without sarcasm, she and I would be a soggy, emotional mess.

 My BFF, Jamie, and I are the funniest girls in the world. We know we are funny. We have to be careful, though, because sometimes we start laughing so hard that tears try to run down our legs!! I am so grateful to have such a great friend. She has been through the ups, the downs, and the in betweens, and yet she continues moving forward, sarcasm and all!!!  She stands up for what she believes in. She gives so much of herself to anybody in their time of need, but does not expect anything in return.

 We get each other in a way that nobody understands. We can laugh for hours over the stupidest things. Our jokes never get old. No matter how down and depressed I am feeling, I always feel so rejuvenated when I see her, and I spend time with her. I was having a really tough morning, actually the past few days have been awful for me. I am going on day 8 of migraine that leaves me confined to my bed. I have been pretty depressed and disappointed that I live such a confined life. I have really been grieving the Amber that I used to be. I am not the same person due to my pain and complex medical issues, not because of the medication. It is hard for people to understand because most of you see me when I have my brave face on, and when I am smiling to hide the pain. 

 I had a bath earlier(I was getting pretty stinky! :D), so I could sit, did not have energy or strength to stand. Ricky, my sweet husband,  washed my hair and helped me wash my body. Amazing how refreshed and rejuvenated I feel, by something as simple as a bath.

Jamie came just as we were finishing up. I was so excited she was here!! I was able to sit downstairs and chat with her for a couple hours. She even got to use her nursing skills by giving me my B12 injection.  Then, she and Scotty(who is nothin' but awesome sauce!), her husband, brought us dinner that was delicious. Scotty was worried because it was an experimental recipe. I am not one of those people that can force myself to eat something if I don't like it, if I do, then I gag which can turn into a vomitus mess pretty quickly. I thought it was scrumdiliumptious! But due to my rigid stomach and gastroparesis, I can't eat very much. Two thumbs up, Scotty! 

Baking with the easy bake oven!

Even our daughters, Bailey (Bai Bai)and Savannah(Savi) are besties!

Anyways, I was telling them that Shop-Ko has a cane that lights up. I got the ad to show them, and Scott said it is $29.99, which is way to expensive. He was examining it some more, and also looked online to see if he could find it cheaper. He discovered it came with three lights and it stood up on its own! I mean seriously, who wouldn't want such a glamorous cane?  $29.99 is the going price, but if you bought two, you could get the second one 50% off! I told him I had a coupon for $10 off, so Jamie and I MUST have one!!  It would keep us entertained for hours, even days. We talked about putting a horn on it, so we could honk if people got in the way!  Our husbands told us NO! Do they not understand how easily Jamie and I are amused, plus it could assist us in establishing a daily walking routine. The refreshing air and getting out more would really help boost our spirits and increase our energy level.  She and I could walk all the way to 90th south. We would be exploring new places with smiles on our faces! We would be exercising, and drinking lots of water, which would surely make us feel better. We would provide entertainment by Jamie blowing out a flip flop and, by me biffing it every time my cane or foot tripped on a crack in the sidewalk. Let's not forget about the dangerous pot holes either. I would hate to have to ask Jamie "why you bleedin'" as she cries hysterically. 

We realized our husbands do not want us to have these canes because we would be ignoring them and their needs. You know men! 😝

Anyways, I'm just rambling on but all I really wanted to say was how grateful I am for Jamie and Scott. Scotty has driven the girls to dance so many times for me. Jamie always brightens my spirits and makes me feel so much better. She can always get me to smile and forget about all the stressors in our lives. I am lucky to have a person, a Christina Yang. This battle would be much harder without her. She and I can make anything funny. Sometimes we don't even have to say a word, just the look and we know we're thinking the same thing. 

James has been through a lot of hard times, but she's all the better for it. I learn so much from her. I admire her. Poor girl, I go to her for everything. She is just down the street and she always knows the right words I need to hear. Sometimes we don't even talk. Thank you Jamie, for being such a great friend. I am honored to have you as my bestie!!!

P.S. Jamie, it was a giraffe!! 

Happiness is a Journey, Not a Destination

For a long time it seemed to me that life was about to begin-real life. But there was always something to be gotten through first, some unfinished business, time still to be served, a debt to be paid. At last it dawned on me that these obstacles were my life. This perspective has helped me to see there is no way to happiness. Happiness is the way. So treasure every moment you have and remember that time waits for no one.
Happiness is a journey, not a destination...

                                                                               ~~Souza

I will admit that 2013 was a very rough year, and 2014 is fairly challenging thus far, but I am not complaining. I know it is hard for so many of you to even understand what we are going through. I am pretty much incognito unless I have an appointment that I need to go to. I have a migraine nearly every day. I have forced myself to keep pushing forward and do the best I can with this chronic migraine life. I have learned these things thus far:

1. Don't live in my "what if" life all the time. I have the tendency to over analyze everything and see things from various perspectives. I am working on it, but I know I am far from perfection on this one.
2. Don't stress about the things that I can't control, like when another horrific episode is going to occur. I am the only one that can control how I handle my reactions and I am the only one that can control my emotions. Again, a work in progress
3. Don't put yourself down all the time. My therapist told me to look in the mirror everyday and say: "I am a beautiful person". I have a hard time with this one because I lack self-esteem and I don't think highly of myself. This might take a while, so don't expect any miracles.
4. I suffer from anxiety, and I have bad anxiety when I am at a large gathering with people I know. I get so self-conscious, yes, even with people whom I know very well. It is easier for me to go to a function where I don't know many people, I can sneak out without anybody really noticing. I have learned that when I feel myself going into a panic attack mode, I need to remove myself  from the excitement . So i will go in another room and listen to my music. I will try to calm myself without causing a scene.
5. I do not have to have an OCD, perfect home. Cleaning house is not a high priority, plus I am usually all alone during the day. I am proud of myself if I get one load of laundry done and still have enough energy to complete a small task.
6. Don't take life granted. I know that is a cliche', but it is so essential to enjoy the little things. When I am having a great day, I choose to spend the time with my family. I don't want them growing up and looking back on their lives and thinking I was a bad Mom and that I was never there for them. My mom is a great example to me. She worked three jobs, yet she was always there when we heeded most
7. Time spent with my family and my bestie is the . I have felt horrendious gas . Guess  i will post more tomorrow.My brain is aeep. 

10 Ways to Help Someone With Migraine

Below is a migraine post written by Kerrie Smyres, which was posted on Migraine.com's page. I do not take any credit for her writings, nor am I posting this with the intent of plagiarism. Full credit for the entire post goes to Kerrie Smyres. I wanted to share this because I thought it was a great post, and she offered some great suggestions. To learn more, please go to www.migraine.com. Thank  you.

10 Ways to Help Someone With Migraine

Posted by Kerrie Smyres—January 26th, 2014

Whether someone has chronic migraine, high-frequency episodic migraine, or the occasional migraine attack that knocks them out for days on end, nearly everyone with migraine could use help during a flareup.

Unfortunately, uttering the ubiquitous phrase “Let me know what I can do to help” is often of little help. Even if you mean well and really do want to help, responding to this statement is difficult. Not only is it tough to think of tasks that need to be done when you’re put on the spot, asking someone to do unpleasant chores seems rude, and admitting that you can’t cope with the stuff of daily life is embarrassing.

Instead of making a vague offer of help, here are 10 different concrete ways to provide assistance. If you’d be willing to do a few different things, saying “I’d like to help you out. I can do either X, Y, or Z” gives the person the chance to tell you which of those needs are most pressing.

1. “Can I pick up something at the store for you?” Specify if you can only pick up a few things or if you’re prepared to shop their entire grocery list.

2. “Do you need a ride to any appointments?” Between specialists and treatment providers, the appointments add up and driving with a migraine can be dangerous. Be clear about your availability – is this a one-time thing that you happen to have time for next week or can they call on you when they desperately need a ride to the doctor and can’t find anyone else?

3. “Can I run any errands for you?” You can ask the question generally or make it specific to what you have on your own errand list, like picking up dry cleaning, dropping off library books, or going to the post office.

4. “Do you need any prescriptions filled or picked up?” Getting prescriptions filled can feel like a revolving door. You can offer to call in prescription refills or stop by the pharmacy for pick-ups (be sure to have the person’s address and date of birth in case the pharmacy asks for verification).

5. “Can I help you with any household chores?” Let the person know you have an hour (or however long) to spare and would like to help them with housework. Be explicit in what you will and won’t do. If there’s a task you absolutely despise, skip it – you don’t want the recipient to feel like they burdened you with their request.

6. “Can I make you a meal?” Whether you’re making an dish for your family that’s easy to double or you decide to make something special for your friend alone, food is always appreciated (and freezable food that can be saved for future meals is money in the bank). Some foods are migraine triggers for some people, so be sure to ask if they are any ingredients to avoid.

7. “Can I pick your kids up from school or take them to soccer practice?” Parents who have migraine spend a lot of time worrying about how their illness impacts their children and fret over missed opportunities because they are too sick to drive.

8. “Can I take your kids to the circus?” Many kid-oriented activities are noisy, bright or full of strong odors, all of which are hard on the migraine brain. Ask if there’s an activity that the person’s kids really want to do that the migraineur dreads, like going to the circus, zoo, swimming pool, or Chuck E. Cheese, and offer to spend an afternoon there with the kids.

9. “Can I help take care of your pets?” Offer to take the dog for a walk or clean the cat’s litter box. Walking often exacerbates migraine pain, as do odors, so these tasks would not only ease the mental burden, they could provide physical relief as well.

10. “Do you want to talk about migraine?” This one isn’t exactly a task, but it can still be a tremendous help. Migraine is so stigmatized that migraineurs often feel embarrassed to admit how much of a hold it has on their lives or are ashamed to be as sick as they are. Sharing the frustrations and grief with another person can be a relief. All you need to do is listen. Trying to fix the problem or making treatment suggestions without being asked to do so usually adds to a person’s frustration.

Some suggestions for ironing out the details:

• Unless you plan to pay for whatever it is you pick up, tell the recipient they can write you a check when you drop off the items (or when they feel better) so there’s no confusion over whether or not they need to reimburse you.
• These offers will probably be considered a one-time event. If you’re willing to make their grocery shopping a monthly thing or if you’re able to be on-call to drive them to an appointment once a month, make that clear.
• If you offer to do an unpleasant task, like cleaning the shower, don’t tell them how exhausted you are afterward or how gross it was. They wouldn’t have taken you up on the offer if they didn’t already know how desperately they needed assistance and they already feel guilty for having you do such a yucky chore. (Yes, this one happened to me and it still stings.)

Thank you for recognizing that migraine is often debilitating and makes doing the normal tasks of life tough. Whatever you wind up doing for the migraineur in your life, you will be providing a tremendous service.

 

Kerrie Smyres has had migraine all her life, which has been chronic since she was 11. She’s committed to living a full and happy life despite-and perhaps because of-debilitating chronic illness.

VIEW ALL POSTS BY KERRIE SMYRES

Fight with humor, courage and bravery

I am one that when I am in a stressful situation, I usually sing and dance, become very sarcastic and find humor in things. I do this, because otherwise I would be in tears. I do not like to cry in front of people. I don't want to appear weaker than I already am. I want to be strong, positive and make the most out of the situation. Don't get me wrong, I have my moments where I cry, no matter how hard I try not to. I try to save the really good cries when I am all alone and can just let it all out. It's amazing what a good cry can do for me.

I try to focus on the positive thing(s) in the situation and not the negative. I never give up hope. I always try to smile. A smile is a universal language that everybody understands, and you never know how your smile can have such an impact on somebody that is having a hard day.

We are all fighting our own battles and have no idea what each person is battling. On the outside, one may look great, but we have no idea what they look like on the inside, so we should try to treat everybody with kindness.

"But you don't look sick". I don't get out much other than for appointments because I wear down quickly. I do my best to be there for my family, but there are times I physically cannot do it. I feel guilty. I feel like a horrible Mom, sister, wife, friend, etc. I have also learned that if I don't take care of my needs, there will be no way that I can care for my family's needs. My body doesn't live by my schedule, it has it's own schedule. I can't plan my life far in the future. Often times, it is spontaneous. I have to live for the moment and take advantage of the good days. I don't take life for granted. I don't take my family and friends for granted.

Hard Day

I had to cancel all plans today. Around 2AM I got woken up with intense, throbbing pain. I tried getting out of bed, and my right leg gave out on me. I was ok. I went to get some water and came back to bed. I chose not to take any meds. Migraines can be a catch 22, if you medicate for every migraine then you are at high risk for medication overuse headache (MOH). If you don't medicate you take the risk of migraine escalating out of control.

I opted to just try and sleep it off in hopes it would be less severe later in the morning. Ended up being a monster of a headache. I had allodynia, even my hair hurt. I got nothing accomplished. I laid as still as possible because even the slightest movement sent shocks of pain throughout my body. 

I am so grateful my husband was home today. He was so sweet. He brought me breakfast in bed.  He kept my rice pack heated, it is a comfort thing for me, I like to keep it draped over my abdomen. He told me how much he loves me and how beautiful I am. I disagree on the beautiful part, especially the way I was looking today. I am very fortunate to have a husband that loves me so much and will do whatever he can to help me feel better. I surely don't take him for granted. I always try to make sure I thank him. 

I will share more tomorrow. My brain hurts and I am having a hard time putting the correct words together.

Let us not forget that He is always with us.

     

Me: God, can I ask You a question? God: Sure Me: Promise You won't get mad God: I promise Me: Why did You let so much stuff happen to me today? God: What do u mean? Me: Well, I woke up late God: Yes Me: My car took forever to start God: Okay Me: at lunch they made my sandwich wrong & I had to wait God: Huummm Me: On the way home, my phone went DEAD, just as I picked up a call God: All right Me: And on top of it all off, when I got home ~I just want to soak my feet in my new foot massager & relax. BUT it wouldn't work!!! Nothing went right today! Why did You do that? God: Let me see, the death angel was at your bed this morning & I had to send one of My Angels to battle him for your life. I let you sleep through that Me (humbled): OH GOD: I didn't let your car start because there was a drunk driver on your route that would have hit you if you were on the road. Me: (ashamed) God: The first person who made your sandwich today was sick & I didn't want you to catch what they have, I knew you couldn't afford to miss work. Me (embarrassed):Okay God: Your phone went dead because the person that was calling was going to give false witness about what you said on that call, I didn't even let you talk to them so you would be covered. Me (softly): I see God God: Oh and that foot massager, it had a shortage that was going to throw out all of the power in your house tonight. I didn't think you wanted to be in the dark. Me: I'm Sorry God God: Don't be sorry, just learn to Trust Me.... in All things , the Good & the bad. Me: I will trust You. God: And don't doubt that My plan for your day is Always Better than your plan. Me: I won't God. And let me just tell you God, Thank You for Everything today. God: You're welcome child. It was just another day being your God and I Love looking after My Children...

First appointment with Dr. Foley, MS Specialist

I decided to start a blog dedicated solely to my medical journey. This way, I won't clog your news feed with all my studies, migraine info, medical mysteries, etc. It will also help in keeping people updated, that like the updates, without me having to say the same thing over and over.

I had an appointment today with Dr. John Foley. He is a MS specialist. I was referred to him by four doctors because of all my new symptoms.

 I have this issue of being unable to void, used to only occur when I was in severe pain. Lately, I have issues of voiding independently at any given time, so I have to carry catheters with me every where I go. I have been straight cathing since August. A urodynamics test was done which showed I have a dysfunctional bladder, but nobody has been able to figure out why. I had small hemangioma in my bladder and polyps in my urethra. The Urologist told me I had him completely stumped. He told Rick and I he thought it was A typical MS. 

I had a full body MRI scan that showed no plaque and obvious signs of MS. I had a lumbar puncture done in November. The docs thought I had build up of pressure in my brain which could explain a lot of the issues. I had no increase in CSF pressure, they said it was actually on the low side. 

I was referred to the Moran Eye Center so they could examine my eyes and look for any signs that might indicate MS. At the last minute, they decided to do one more test because they noticed I had a dry mouth and dry eyes. I am on effexer, and dry mouth is a side-effect, so I thought nothing of it. The test came back indicating I needed labs drawn to determine if I had Sjorgen's Syndrome. The levels were slightly elevated.

I saw Dr. Hoesch(the neurologist that replaced Nina Riggins) a week later and he said he wasn't too concerned with the numbers. He said I would be concerned if the results came back in the triple digits, then he would be more concerned. He ordered a bunch of labs. He got a baseline of all my vitamin levels. They were all normal except for my Vitamin D level. It came back at 18. Normal value for the test he did is 30-80. I am supposed to start taking 50,000 units of vitamin once a week. He also advised me to resume B12 injections as there is not a shortage like there was last year.

My lab values came back in the triple digits." O.K. I am not going to worry, yet" I still needed to see Dr. Foley. I have not done a lot of research on Sjogren's Syndrome or MS, because I am scared and I don't want to freak myself by the "what ifs". 

When I saw Dr. Foley today, he said I am exhibiting signs of MS and Sjorgrens Syndrome. My husband and my Mom told him I was getting worse instead of improving. I failed the neurological test. I couldn't even lift my right leg off the table. If I was being checked for DUI, I would have failed because I couldn't even walk a straight line. I kept falling over. He said I was in a tough situation as I am exhibiting signs of Sjorgens and MS. He said I need to get into a Rheumatologist ASAP and then come back to see him. He said I needed to start treatment for either ASAP. So, I got no answers today. Have to wait and see when I can get into a Rheumatologist and then arrange appoint with Dr. Foley. I left his office with nothing but confusion and frustration. I wish something could be identified straight forward, without all this guessing. I want to be on as few meds as possible. 

I am fading quickly. I will update more tomorrow.