I am in the middle of working on 192839 things so this will be a short deep thoughts from Hope today :)
I am a true believer that everything happens for a reason--and things keep reminding me of this. I know I mentioned I was having second thoughts about staying with my current job because of some of the rough clients...however, after actually getting a job offer to a full time 8-5, benefits, good pay; I had a panic attack, and had to do some deep thought about the value of my life. My husband is my #1 priority and I took this job because it offers me the flexibility that is needed in order to be able to be home with Steve more & if an emergency happens I can come home to him right away. All the money in the world couldn't make me give that up right now. I can't see going to an 8-5 with no upfront vacation or sick days and not be able to take days off when Steve needs me. Also, with this job all my paperwork can be done at home---I can't give that up. It's a sacrifice, but money is not the #1 importance in my life. I know we need it, and I know we will have to make sacrifices, but I love my husband and he needs me. After thinking of all this & realizing I was going to suck it up & make the job work & do it with the best of my ability I thought of "what am I to be learning in this job?" Thanks for your prayers & continue to do so for me to remain safe :)
With that comes deep thoughts from Hope. :)
I have been through a lot in my lifetime, and I often think that God has put me on this earth to help people. He has put me through things to help me learn lessons, learn how truly strong I am, & to be able to help others who may be going through something similar in the future. I truly try to live my life to help make a difference in the world. I have my completely selfish boo hoo moments, but I try to be grateful for what I have everyday. I truly try to live my life with Joy & not get bogged down with negativity. Sometimes this causes me to have to make decisions that may not make sense to everyone else but as long as I truly feel at peace with my decisions, that is all that matters.
I have been thinking about what lessons I am to be learning with this current job, and it's this---to keep me humble! In all honesty, the majority of my clients (there are always those few extra challenging exceptions...haha) bring a lot to my life. They teach me something daily. There are so many people out there hurting that desperately want help & I think it is our responsibilities to help those the best we can. Every time I have a good session with one of my clients it makes the loads of paperwork, underpaid hours, and sometimes really difficult clients worth it. Also, the majority of my clients have a lot of HEAVY things happening in their lives yet they always seem to great me with a smile & always saying, "Can I get you anything Miss Hope? Glass of water, coffee, soda?" Here are these people who have nothing & they are offering me coffee or soda & greeting me always with a smile.
We all go through hard times but if they can greet me with a smile & politeness, why can't I? SO there you have it deep thoughts from Hope.
ALSO---some additional updates:
---Bracelets. We've ordered HOPEforSteve bracelets that we will give with a $10 donation. We wish we could give them away to everyone, but the cost of buying & shipping always gets in the way.
---The donation tab is back up & running---woot :) Thanks to my brother Zac for getting it started & my sister Jes for taking the time to sort out the problems we were having!
---www.hopeforsteve.com has been updated with lots of new things. Take a look around & please share it. My sister Jes has spent a lot of time with this website & is constantly updating it.
--Thanks for all the prayers for Steve, we ended up canceling a weekend getaway for him to continue to rebuild strength. He is feeling much better & is eating like a horse again ;)
As always lots of love & thanks to all who support us <3
:-*
ReplyDeleteI just saw you featured on Say Yes To The Dress and was so touched by your story. I found your blog and it sounds like you have researched everything but just wanted to make sure to leave no stone unturned.
ReplyDeleteI have been ill for 10 1/2 years with Lyme Disease. I went undiagnosed for 7 years and saw 30 or so doctors before they finally figured out what was wrong with me. I am now in treatment (which at this point will be a long road). However, like you, I have researched A LOT about Lyme and also belong to many Lyme support groups. And one thing that stood out to me with your story is that there have been many people diagnosed with ALS that actually turned out to have Lyme Disease. If you research all this you will find out that the tests for Lyme Disease are very inaccurate and very often come back negative even when someone has Lyme. OH and another thing is a very large amount of people never even see the tick that bit them and they don't always get the bulls eye rash. This was the case for me as well. I never saw the tick and never had the bulls eye rash but definitely have Lyme (as well as several other tick borne diseases).
If you Google ALS and Lyme Disease you will find a lot of info on this topic. What is also interesting is that there is a medication being used by some doctors to treat ALS which has been helpful for some ALS patients. This medication is IV Rochephin which is an antibiotic that coincidentally is also used (among many other meds) to treat Lyme Disease.
Anyhow...if you google all of this you will find a lot of information on the subject. If you do decide to investigate this further I can't stress enough how important it would be for you to see an LLMD (Lyme Literate Medical Doctor) and NOT any other doctor. There is a lot of controversy surrounding Lyme Disease and unfortunately most doctors are not qualify or equipped to handle Lyme...especially severe cases. Also many won't even acknowledge that you have it if you test negative when even the CDC says that the tests are not accurate and that it should be a clinical diagnosis.
In order to find a LLMD you can go to this website http://www.lymediseaseassociation.org
Another good resource is http://flash.lymenet.org
I am sooo sorry to ramble on about this...especially if this is something you have already pursued. I just wanted to share this info with the off chance that it could help Steve. Given his young age for ALS it just really struck me that he could have Lyme since I have heard of cases like that with younger people diagnosed with ALS.
Anyways...no matter what happens I wish you and Steve all of the best and my thoughts and prayers are with you both. The positive outlook that you both strive to have despite your situation is so admirable and uplifting. I have also tried to remain positive throughout my illness as well.
Take Care!
Pam :-)
Pam I just commented on this as well. I totally agree. The controversy in the medical world is amazing. I've seen 12 doctors. Finally one who thinks my tremors, neuropathy, neuralgia, mental fog, confusion dizziness, joint pain, and heart palpitations among other symptoms are related to Lyme. The test is inaccurate so even IF he tested negative that doesn't mean that he doesn't have it. ALS doesn't have a good prognosis so in my opinion I wonder what would the harm be in trying the long term antibiotic therapy for him, what if his symptoms improved? As in my other comment I suggest to watch "Under our skin" very informative. I love my LLMD Dr. Beals he's in DC, but you could find one close to you. His neurologist will say, "Lyme doesn't cause this" as I've been told by mine. I've just started treatment so we'll see but I'm banking on it's my Lyme.
ReplyDeleteLyme has a long road to recovery, but it can be treated in most cases with extensive therapy. The other thing is that if he starts antibiotic treatment, he'll get worse before he gets better. It's called the herxheimer reaction where a lot of the bacteria die off and your body needs to sort of detox it. Every time you change doses add medication it can happen again, stress, travel, etc can also set it off. 5 steps forward and two back type thing.
email me if you have questions honey you and steve are in my prayers emily_k_taylor@yahoo.com