Gary's Fight with ALS: 2013

Saturday, November 30, 2013

Ok I am past any pride issues I may have we need help...Please

Ok I am past my pride, I am past wait and see as God answers my prayers. Sorry but I am scared. I have been running this hamster wheel for 4 years on Dec 3. Many times I felt like my head was just above water. Usually I could just work longer...travel and work more...sell this and sell all of that...cut budget here...we can do with out this and that too. Well I do not have anything let worth selling, the job I am on is got to be one of the penniest pinching jobs since starting this line of work. So no overtime for a good while along with this 3 weeks off over the holidays. Which is nice to be home but now is not a good time. I have cleaned out my savings...van totaled but not able to replace it. Gary has been with out his immune building supplements along with other vitamins and such which has been since April. I was hoping to get back on my feet a few weeks into this job but who knew it would be only forty hours for so many weeks. All that being said I am swallowing any pride I might still have and put a plea out for some help. Many of my facebook friends I have not seen in a long time, especially since all the moving around with work. There are also many I see here and there do to working with you. Some may even be tired of hearing this old lady's story about how my husband is a Labor out of Local #480 and he has been unable to work since Dec 2009. His time in was 2 years short to get disability benefits. He was vested but still that does not get him disability. Yes he does get Social Security. Though with ALS so much is out of pocket in light of no cure. I have just found out what is wrong with Garys legs and why they have been hurting him for so long why they are hot to the touch and why he sleeps so much. It is Cellulitis, we have been to several doc's but no one has said they just want blood work and see you in January. This is serious stuff if the infection gets in his blood it will not be good.
Meanwhile it just keeps getting worse.
I need to get him some SERENDIPITY High Voltage™ Colloidal Silver
1 Pint (500ml) normal price $48.00
Now only $US43.70
He use to take this it builds the immune system and fights infection of course by insurance will not pay for it and I am broke. I mean I am paying the basic bills and food and gas but that is it. There has been so much going on and I just can not keep up any more. I had to take Ashley this morning for a emergency toothache. She has 4 teeth that are terrible and need extractions $250 for each tooth this is the cheapest route and the are her teeth clear in the back so it works out ok but I just have to say I need help. I know I am not anyone else s responsibility and everyone is having some real rough times also. But I am just putting it out there if this touches your heart and you can help in anyway I do so appropriate it.
My address is 7318 county road 67 Gibsonburg, Ohio 43431 Ashley dentist is Aspen if you feel lead to help out you can just make out a check to Aspen Dental we are making appointments accordingly to what and when we can afford it. With Gary and the Colloidal Silver 3 gallons should get his immune system doing much better and hope all the Cellulitis will be gone if not by then my work will be picking up some more hours. I will leave the link below. If you can help I so appreciate it. Please if you all would just pray for us pray that God would hear our cry and meet these needs.
http://www.colloidalsilver.biz/cart.html
SERENDIPITY High Voltage™ Colloidal Silver
1 Pint (500ml) normal price $48.00
Now only $US43.70

If I have offended anyone I do apologize it is not my intent. I am so use to being able to fix things in one way or another and as this disease continues on as this chapter keeps going my hands are being tied together more and more. I am running out of options.

Friday, November 29, 2013

Cellulitis and ALS

http://en.wikipedia.org/wiki/File:Celluli tis_Of_The_Leg.jpg

I do believe this is what is going on with Garys legs. I am just not so happy that we went to 3 doctors to get answers and we did not get any. I have to google until I find this picture definition and explainations. Do they not care about ALS patients. This is serious and it needs to be taken care of in a timely manner. He has been in so much pain it is not right all they could give him was pain meds and muscle relaxer. Are they not suppose to find the root cause and treat it instead they treat the symptoms.

Looking through the window of this families heart about isolation vs interaction

The fact that indeed it is extremely hard to keep interacting with a loved one who is battling a terminal illness. But to see through the eyes of their Dad or Grandpa that during this time the love they have actively shown is magnified in the heart of the one who is sick. Along with the fact that its is very selfless to keep actively loving that person. I know they say everyone grieves differently and I do believe this, of course, we are all different. But I also believe that how we handle this grief, as in denial or acceptance of the situation. Or How we process this grief as in keeping distance or jumping in with both feet and staying connected. The difference we choose will determine our reward or our blessing from this or any journey we travel in life. But to go back to being selfless in this journey of a loved one rather it be family or friend with a terminal illness, I want to share boldly that what is received by that loved one no matter how large or small the act of love is just simply by being there by message...letter...pictures...cleaning...opening your home up for a dysfunctional crazy visit ( lol )...anonymous gift...treating them the same as if they are not terminal at times...talking about their needs and health and then follow up with talking about deer hunting or racing as if it is just another normal day (lol). Fulfilling your normal responsibilities in relationship to this person, ALL of this is magnified in the hearts as a magnified love to the person whom is ill. Not to mention the magnified love felt by the caregiver or family of the person who is ill. Many of you may already know but have not been able to put it into words, or maybe you think it is just a feeling you feel but I am going out to say if we are made in the image of God and I do believe this than I do believe we are capable and are meant to feel the extreme love that He has for us. I am not saying that we can begin to experience Him at His level. But what I am saying is that as we are selfless and reach out to someone who is hurting and grieving their own loss, isolated and lonely which could be experienced as or interpreted as rejection what I am saying is...What we give selflessly becomes magnified to the receiver because only with Christ love we have received can we be truly selfless in our act. I have to admit I get accused of using a lot of words trying to explain myself or anything for that matter as I have done here. I hope the original message is not lost. Which is in short (lol) see if I can keep it short (lol) It is easy to enjoy a day that is sunny with just the right wind everyone smiling and playing together. It is easy to spend a weekend together with no misunderstandings and everything running smooth and we remember these days fondly and are driven to make them happen on a regular basis. But even though theses times have happened they are few and far between. Everyone's expectations rule and ruin our everyday interactions. When we are in a selfless mindset which of course has to be a core value (a heart condition) our expectations are as low as they can go because we are expecting nothing in return. Just note this of course, there is a balance, I am not talking about allowing abuse. I just want to note the abuse because in light of your experience in life you will define the words "expecting nothing in return" through your own window of life and this is of course where your journey is different than mine different than everyone and we allow God and His word and Holy Spirit to guide us through every bit of knowledge we gain. So to sum all this up to The little things we experience during this time in our lives are magnified because as we have experienced for different reasons this chapter in life brings isolation and your world seems very small. You can be surrounded by crowds of people yet still feeling lonely. Only by people knowing you and having dialog or interaction BACK and FORTH does the isolation go away. I guess in years past we or I should say I am guilty of taking for granted the interactions of so many great people, friends and family in our lives. Now that time, travel, location, finances and illness has created a isolation from this group of people it has helped me to see how important all those interactions were to me and my quality of life. Do not believe the lie or let anyone try to fool you we do NEED each other in good times and you are so much more needed in those bad times. Though the hidden blessing is when a loved one is gone they leave you with the riches of the wonderful blessing to have taken the journey right along side them. Riches no economy can take from you...nobody can take from you. Greater than any 401K plan.

Has this blog been any benefit or blessing to you ?

Gary and I made a choice when he was diagnosed with ALS to blog stories of our journey. We were driven then to do this because when the docs diagnosed Gary they gave him 4 - 7 months to live. Literally said go home and get your stuff in order because you have 4 - 7 months to live. So when we started educating ourselves and seeing there was more than one way to handle this diagnosis we wanted to share it with anyone that may be finding themselves in that same situation. So they would not give up hope and just accept the 4-7 months as we did at first. So maybe time would not be lost looking for help that this blog could somehow get them answers faster. The disease and changes occurring in our lives were already emotionally draining and to have to read through all the ups and downs of ALS was very hard for both of us. So our hearts desire was to help sift through and hopefully help save some very precious time by sharing what we have tried and how it seems to have been working.

So meanwhile we posted a lot of different information that was helpful to us as we made the journey. Some seemed helpful at that time, some still seems helpful and some we can no longer afford so we have had to take other avenues and as we change that course how we see positives and negatives. But one goal has been the same to share honestly our journey.

We also have used this blog to share family stories. I now know that we can literally print out this blog and keep it as a journal to this chapter of our lives. A journal for the kids and grand kids. A journal to witness the ups and downs. A journal to read as they are older how important their interaction with Dad and/or Grandpa was during his illness and also how important these interactions are to help support Ashley, Lance and I, as we are part of the front line battlefield daily with Gary.

So now back to the original question. Has this blog been beneficial to you in anyway?
Please do share any and all comments. We have shared some stories but not all of course.Are there other stories of interest. Do you like some stories more than other stories? We are curious to see what changes we can make at this time. Maybe we need to get back to our original purpose to help others with information we are benefiting from concerning ALS. We may need to turn to having two separate blogs one as a journey of information and one for the emotional journey maybe one just for family events even though I think they are all of one journey. Do you come back to the blog often to get updates even though you are not listed as a follower ? How did you find this blog? Gary and I made a pack with each other a long time ago if our story can bless another in either... what to do or what not to do we will be transparent to share it. God has made major transformation in our lives and is still at work in us. Please feel free to share any and all your thoughts because they are all valuable...
We see that we are getting a lot of hits on the blog and are very excited about it. Even in this very isolated stage in our lives our desire is to make a difference for the good in others lives. Please share your answers.

Happy Thanksgiving to all of you who visit today. Many blessing to you and your family.

Gary and Sonja Mitchell

Monday, November 18, 2013

It has been amazing to me how a diagnosis of a terminal illness WITHOUT A CURE can make such a large effect on how patients are covered by insurance. This also effects how patients are treated by the doctors and support care. Quality of life seems to be ultimately left up to the families of the patient. Not only the emotional support but also the financial support for anything that would include quality of life. I have called hospice I have called many local agencies but as long as we keep doing proactive care for Gary he does not qualify.
A big need we have is a second vehicle in which a wheelchair can be put inside the vehicle. This is to transport Gary while he still can leave the house. We have even looked for help to get Gary transported to doctor appointments but it does not happen. Because it is so hard for anyone to understand Gary I am currently paying for a voice machine for him but we do not have access to it yet. So as I work and our son Lance works Gary has no voice. During business hours we are not able to call and to search. I have been chasing ways to get help but then can not take off work to get Gary there and to also have someone speak for him. I feel like yes there is help out there but I am not available to be able to make the connection to get the help. I am sure many think with cell phones time is limitless. Not true with my work they expect to get their work done while I am on the clock. I understand that and I agree.

I have read about divorce with ALS and how wives are more likely to care for husband who is diagnosed. In this case the divorce seems to be as low as 3% will divorce their husbands. But then when wives who were diagnosed there is a much higher divorce rate. It was stated about the man choosing to work and not allow the disease to keep him from making a good living and how others stepped in to help out the divorced wife.

I just wonder if this is not part of a great plan to get his loved one the best care. He steps aside and everyone sees the need and steps in to take care for this terminally ill abandoned wife. Also no longer his income is not calculated to determine her eligibility for much needed and very expensive help.

Men do have that very logical part of his brain to help plan this out and bare the burden of what others may think and his loved one seems to be much better off without him.

I as a caregiver of my husband who seems to be missing out on much needed care because of the fact that I am determined to work as much as I possible can to help meet all his treatment needs. Which now puts me in a higher income bracket that keeps my husband from getting the support he needs. Now he would have to give up on the natural treatment that helps him so much, slows down the disease and helps with quality of life. Because in order for us to meet these natural treatments needs I have to constantly pursue the higher income.

I feel like we need a full-time wife or family manager in this home while I take on the financial provider role or visa versa. LOL

Again just some thoughts.

I try to keep all this in the background as Gary and I go through our daily lives. It is deer season now a time of year he has always loved and enjoyed with his friends and family. Where we now live friends and family are too far away. He has a scope set up next to our bed and he can sit on the edge of the bed and watch deer right outside the house. A couple of nights ago there were three doe's right outside the window as he watched you could see the sparkle in his eyes. He says with hand motion that he is waiting for the buck to come out after the multiple doe. He motioned to me that he would just shoot that doe from right there. Now know that he did not even have his gun or bow or anything beside him, but he was still living it as if it was and that was good enough.

I would have to say that my husband is unbelievably strong. He fights through daily self care to stay independent and to help out in every way he can. This will exhaust him to where he will sleep for sometimes two days.

He loves when we can go to see the grandchildren because it is wild how they meet grandpa right where he is...the youngest two do not know their grandpa any other way but with this disease so they are very use to greeting grandpa with a growling noise instead of a hello lol. The youngest just smiles and growls as soon as he sees grandpa's truck and then gives grandpa a big smile and growl when he sees him. This is Jett he is two. This has also has been past on to the next to the youngest Alissa she then has watched and knows that all is ok as she talks 100 miles an hour to grandpa and he just smiles and gives her a thumbs up. So know as I watch this opens up the door for the oldest two Piper 6 and Kyli 9 who probably by now barely have memory of grandpa before this horrific disease but know it always has not been like this and they pick up on the subtle changes of decline from the last time that they seen grandpa, so they hesitate a bit, but will then join in with the younger ones and just accept Grandpa Mitchell just as he is...These little ones and their innocents have been and are such a blessing to both of us. Helps us to stay in the now and enjoy what we have today.

We plan to see them next weekend we hope for a lot of good times and memories made making pumpkin pies and stuffing a turkey and all the fixings. Gary has a doc appointment Friday so I will be taking a day off work and taking him down and we will spend the overnight with DJ and his family. This will be our Thanksgiving Day :)

Thursday, November 14, 2013

Never wanted to be in a position where I could not afford my husbands all natural treatment.

I have been laid off work for 4 months this year. During that time I used saving to cover bills and move us back home to catch a local job close to home. We have been settled in our new location since May. Ahhh nice to being almost home. Only 2 1/2 hours away from what we call home. I went back to work in August. With my job I count on the 72 hour weeks to pay for Garys quality of life treatments. With this job I will be only working 40 hours which is good and bad. The bad is it barely covers bills and no treatment for Gary. The bad is Gary seems to be declining more rapid. Watching him slowly loose this battle breaks my heart. Part of me wants to run as fast as I can. No where particular just run. The good is I am home more and can help him more and take care of the house responsibilities. I just can not get over the fact that I feel like I am failing my husband, failing my friend, I promised I would take care of him and make sure he has what he needs. The last post I shared a article that I could really relate to, being so angry that my expectations for those around me are so very high. I can see that very much but not sure why that is a result from my anger and hurt. I just had to share. I am trying to do what I can but it seems like all the stops are out and I can not do any more. I am so sorry.