Nicole’s Health Journey

 
I hope you not only read Nicole’s Journey but are able to help her by donating. Here is her story in her words…

  
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……Not only did my life take a drastic turn about 3-4 yrs ago but so did my family’s. I was diagnosed with a very rare condition called Tarlov Cyst Disease. Tarlov cyst disease effects 5-9% of the general population (less then 200,000 Americans) and is more prevalent in women then men. Tarlov cyst are a nerve root cyst and as the cyst grow they compress the nerves inside the cyst as well as the nerves around the cyst.

Symptoms of the Tarlov cyst:

– pain in the lower back, buttocks, legs, and feet

– weakness/cramping in legs and feet or arms and hands

– parasthesias in legs and feet or arms and hands

– pain in sitting or standing for any amount of time

– pain when sneezing and coughing

– inability to empty bladder (extreme cases inability to urinate at all)

– swelling in the sacral area

– pain and pressure over the sacrum and coccyx (tailbone) extending across the hips and into the thighs.

– vaginal, rectal, pelvic, and abdominal pain

– headaches/migraines due to the changes in spinal fluid along with blurred vision

– dizziness and a loss of balance

– sciatica

Being outdoors was the one thing my family all enjoyed, hiking, adventure walks (my daughter it was endometriosis and there wasn’t much they could do about it. It seemed like with each passing year came a new symptom. Doctor after doctor just passed me off as nothing was wrong or it was all in my head, I was even told by one doctor I was a hypochondriac. I was given so many different medications to try but they just seem to make things worse or have horrible side effects. I was told I needed to loose weight and everything would stop so I lost almost 150lbs but was still not symptom free. It was the summer of 2011 that I lost all bladder function and I had to start self-cathing. I was devastated, who at 28 yrs old looses the ability to go to the bathroom?!?!? I was subjected to test after test, multiple MRI’s and CT scans and still everything came back negative nobody knew what happened. So this too was another symptom that I just learned to live with. The symptoms got a lot worse early June 2013, I woke up and my left leg was numb (the feeling you get when your foot falls asleep times 100). Because of yrs of being like this my left leg weakness has caused my foot to begin to drag and I have lost all reflexes. Not only has this debilitating disease ruined my quality of life but it has taken so much from my family. We no longer are able to hike or take our adventure walks because the weakness in my leg has caused my foot to drag. Bike riding is completely out of the question because siting for any amount of time is very painful and causes a lot sciatica problems. I would love to be able to get back to our old life. All these tests have not only taken the small amount savings we had but have racked up a stack of medical bills. Currently my husbands income is our only income. We have located 1 of 5 specialists who is able to elevate the pressure on the nerves with amazing results. Dr. Feigenbaum is located in Dallas, TX. He is covered on my insurance plan and I do not require a referral to see him. I have finally gotten an appointment scheduled for October 15th with Dr. Feigenbaum. Then I will need to get my surgery scheduled and the funds raised for surgery. After surgery is done I will be required to stay in Dallas for 2-3 weeks post op before being released to come home.

These are the different stages of a tarlov. The circles are a sliced view of a nerve and the cyst is the growth growing off of the nerve

The white mass at the bottom of the spine is a large tarlov unfortunately I do not have the measurements

……………………………..This is a letter that I had written to my family and my close friends in regards to what I live with every day. I have lost almost all of my friends and alot of family since being diagnosed. It has definitely been trying.

I am writing you this letter in hopes of improving your understanding of

those who live with symptomatic Tarlov cysts and the chronic pain, the nerve

damage, and life altering changes the disease causes. Having the multiple cysts on my spinal nerve roots that has resulted in sever nerve damage causes chronic pain and many other issues in my life (a lot of them invisible). Most people do not understand a lot about the relentless, intractable pain and its effects.  Most people are misinformed and uneducated on this rare condition that effects less then 200,000 of the worlds population. In the spirit of informing those who are the most important to me and the ones that I hold closest to my heart these are

the things that I would like you to understand about me and my medical

diagnosis, Tarlov cysts disease.

 

Please understand that living with this medical condition doesn’t mean that I am not still trying to live a “normal” life. However, I spend most of my days and nights in considerable pain and exhaustion; sometimes I probably don’t seem like much fun to be with, but I’m still me…….. just sometimes stuck inside this changed body. There are things that I can no longer do, and I have had to accept that. I try to focus on what I CAN do, and not what I can’t!

I worry about how the changes in me are affecting my kids, my friends and my family. I care very much about each and every one of you, and I’d still love to talk to you, hear about your life, about the family, and how everything is going. I like to talk about things other than me and my medical condition and pain. I still have the same interests I have always had; there are just some of them I can no longer actively pursue. I am grateful, by the way, for the things I can still do, my faith in God, and the blessing of your support, love and friendship. Please understand the difference between “happy” and “healthy”. When you have the flu, you probably feel miserable with it, but in a week or two you are back to normal. I’ve been living with this diagnosis and its symptoms for years; I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in pain, or not extremely fatigued, or that I’m “getting better”. Please don’t say, “Oh, you’re sounding good!” or “But, you look so good”, as if nothing could possibly be wrong. When I am around you and others, I try to smile, laugh, and enjoy being with you. I am merely coping. I am happy to be with my friends and family and trying to look normal and act normal; it does not mean that I am not in pain or that I have had a miraculous recovery. Please understand that being able to sit, stand , walk, or be sociable for 15 minutes doesn’t necessarily mean that I can sit, stand , walk, or be sociable for thirty minutes, or an hour. Just because I managed to sit, stand , walk for thirty minutes at a time yesterday doesn’t mean that I can do the same today. With this medical condition, it gets more confusing every day. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up, and how painful the day will become; in most cases, I never know from hour to hour. That is one of the hardest and most frustrating components of living with Tarlov cysts and chronic pain. It sure makes planning ahead difficult, and it means I have had to adapt to an altered life style. It has been quite frustrating and is quite a learning experience. I am still learning more about my condition and still learning more ways to learn live and cope with it on a daily basis.

Please understand that chronic pain is variable. It’s quite possible that one day I am able to take a walk, go out to lunch with you, go shopping, or to church, although when I get home or the next day I’ll have trouble walking to the next room. Please don’t be confused by saying or thinking, “But, you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can. I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to remember how very lucky you are to be physically able to do the things that you can do. I have to re-prioritize my plans and activities constantly, because of the pain and other symptoms that persist. I am still learning each day to cope with what I can no longer do, and to remain very thankful for what I can do. Please understand that “getting out and doing things” does not always or necessarily make me feel better, and can often make my symptoms worse. I cherish the times I can be more sociable and active. I really try to be as active and involved in activities as I possibly can, as far as the pain and symptoms allow. If I was capable of doing something that would take it away all of the time, don’t you know that I would? You know me and know how my life was before these Tarlov cysts and resulting symptoms began and have continued. Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more symptoms and an increase in physical pain. The recovery time from doing something I should not do, or longer than I should do it, is significant. I call it ODI (overdoing it) and I

pay for it dearly .You can’t always read the pain on my face or in my body

language. The pain is not caused by depression. The sadness and sometimes

irritability that you might hear in my voice (even though I try hard to hide

  1. it) is from the pain and adjustments I have had to make in my life to go on,

and it is due to the changes such as the loss of my job, my inability to

jump in the car whenever I want to run errands, see a movie, visit friends, shop, clean my house, work out, go for a walk or hike etc. as I did previously. Please understand that if I say I have to sit down or lie down now, that probably means that I have to do it right now; it can’t be put off or forgotten just because I’m somewhere else, or am in the middle of doing something. I have had to lie down in the floor in my doctor’s office when I had to wait too long, and could no longer sit or stand. Chronic pain does not forgive, nor does it wait for anyone. You may have wondered why I don’t just take something stronger for the pain. I have tried many different medications, and unfortunately a lot of side effects. I also had surgery which did not result in significant improvement for me, although it has for many patients. I have developed many more cysts since my surgery in cervical, thoracic, lumbar and sacral spine areas. These symptomatic cysts on the spinal cord nerves are rare, and are not related to more commonly understood problems, such as herniated or ruptured discs. Currently, there are only a handful of courageous Neurosurgeons and Interventional Neuroradiologists in the world who are seeing the majority of patients with this rare disorder and are willing to attempt treatment. Currently, the treatment outcomes are indicating a higher percentage of improvement and many patients are much improved. If I seem irritable or distant occasionally, it ¡s probably because I am experiencing an increase in my symptoms. It’s not how I try to be. As a matter of fact, I try very hard to look and act normal. I hope you will try to understand. I have been, and am still, going through a lot of change. Chronic pain is hard to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and to live my life to the best of my ability. I ask you to bear with me, and accept me as I am, though changed from the way you knew me before TCs. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you. I need you to call or visit me when I cannot go out. If you live with me, sometimes I need you to help me with the shopping, cooking, and cleaning. You know me well enough to know it is very difficult for me to ask for help. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss so much. I know that I have asked for a lot of “understanding” from you, and I do thank you for listening to my innermost thoughts on paper. It really does mean a lot to me that you care. My head and heart are still the same; it is my body that has changed, and my life as I knew it before Tarlov cysts has changed. One of my most heartbreaking things is to have my kids help me every time I end up on the floor after falling. In recent months my left leg weakness has caused my foot to drag and when I am tired it gets really bad and I have a tendency to fall. I am starting to lose some of the sensation in my fingers in my left hand but on the bright side at least I am right handed. These may seem like little things, but it is sometimes those little things that make you aware of the changes this disease has caused. Thank you for trying to understand what I do not completely understand. I appreciate your love, concern and prayers. This new journey of learning to live with this disease has blessed me in many ways. I have met many new people, learned a lot about myself and find myself surrounded by God’s blessings in my life each and every day.

Good Riddance August😝

Hi everyone! I pray you are all doing well or at least hanging in there! Lately I have been going through some emotional medical/ life stuff. Writing my post has been at the bottom of my list. I have just been super overwhelmed! I feel really left behind the living. I feel people are living life while i am sitting on the sidelines. This disease just takes so much from you & some days i just HATE it!! Ok enough feeling sorry for myself…
This is a new week and i have a few good announcements. First off we go on our first vacation since my diagnosis! Super excited and a little nervous how my body is going to behave. Please say a few prayers as we are off seeing some beautiful country on the motorcycle, we leave in less of a week. I will be videotaping and taking a million pictures to show all of you! Also i recently started a small part time job. I am working at an awesome Gun Range where they are willing to work around my health! What a blessing!! Some of you have been concerned about me working but it is only about 5-10 hours a week. If it is too much, i will choose my health over making some extra $$ and working with a great crew! My health is #1!! I will keep everyone posted. 

  
 On another note i hope you all got a chance to read Ms. Candace’s story. Last i looked her post hit over 500 readers! That is amazing. I hope her story touched your heart as it did mine. It is a BIG reminder that you can’t just look at someone and know their story. Before we leave on vacation, i will be posting another great post by Nicole. Nicole is suffering with Tarlov Cysts. So please keep checking back for her personal story! If you have a story, i would like to share it. You never know who you may help by telling yours. 
So here is what has been going on with ME these last few weeks.

Brian had surgery, it was quite a change to take care of him for once. Good thing my kids are grown, with this disease i barely had enough strength to help him for a few days. I definitely could not raise children right now,so for all you that complained about me having kids so young,there was a reason! 

Then we had our “training”‘at the Gun Range. I made it all the way through the entire day! Shocked i was HA!! Unfortunately the very next day my left leg decided to be weak and not work much. Guess my health told me who is boss. Thursday the 20th of August i was invited to hang out with some coworkers and test out the new range. I had a lot of fun. Best music to my ears #pewpewpew. I even got to shoot a Glock18. 

Friday was a rather tough day as my body was exhausted by all the excitement of the week. I ended up going into the hospital 🙁 Just an awful day all around! All i wanted to do was RIP my disease out of my body and punch it in the face!!! Later during the weekend i pushed through he pain and went on a ride to Volcano Ca. On this ride some of our riders hit a bear & i am just grateful to say everyone survived except the bear.  

   
 It was a very emotional weekend to say the least! 

 I then went to work for a few hours and then used my last spoons of the week at the evening church service. It is very important that i save spoons for my church. I love listening to my pastor preach!! This past week has been awful, my best friend has been my bed,blanket and heating pad. So frustrating to be in so much pain!! I feel like my body is a pill box this week and i still feel crappy. I plan on relaxing the rest of the week because i want to go on a ride this Saturday, i work Sunday morning, i have concert tickets For Tuesday night and Wednesday we leave on our first vacation. Busy Busy!! I hope my body can do THIS! 

Just an FYI for those who have asked, When we return i will start the new mix of chemo drug mix and i promise to keep everyone updated on that.  Please remember to not take us Spoonies for granted. Just because we are sick doesn’t mean we won’t move ON👍 Have a great week/weekend everyone! For all your riders…ride safe💋

A big love HUG to my adopted Mom Jeannie..thnx for my Harley Davidson Cat💕  

Beautiful Scars

candace

My name is Candace, I’m 17 and this is my story.
I was born in Paradise, California to a 19 year old single mom I have never met my biological father still to this day. My dad now has been the only dad I’ve know since I was 3. Growing up wasn’t the best we didn’t really have a lot of money, my dad was an alcoholic until I was 7 and the only reason he quit drinking was cause my mom got pregnant. He was abusive, verbally, meantally and physically I watched him hit my mom as a little girl then as I got older me. He called me every name you can think of, stupid, retarded, fat, cuss words etc. I was never good enough for anyone. My family constantly told me I needed to lose weight, I was bullied until high school constantly told I’d be prettier if I was skinny. But the thing is I was happy with myself. I was put on the back buner when my little sister was born it seemed than everyone forgot about Candace it was all about Josie no one came to see me. In middle school is when it started. Thinking about suicide and such but I never thought it was something to be concerned about I was like 12 so it wasn’t a big deal to me. My way of hiding the way I felt was to say how much I hated it and how stupid it was. There were nights when I’d sit and ask why I was alive I’d cry to god and tell him to take me away take the pain away, I didn’t want to be called names everyday and get told how worthless I am anymore. I was saved at a young age and knew in heaven there was no pain and that’s why I asked God to take me away, but he didn’t nothing got easier it got worse. My dad lost his job, we had lived in a brand new house, had nice cars I had everything I wanted then we lost it all. We moved to a two bedroom apartment we didn’t live there long as my dads unemployment ran out. We started living with people. We moved where ever was stable my mom got on welfare and she didn’t even get enough so we could pay rent. We were staying in a motel six and my dads friends parents told us about this church and we started going. God had blessed us we got a house and such but I was still not myself put on a show saying I was happy then when things were good for once they got bad again. Moving to wherever was stable again, we moved to Reno, Nevada back to Oroville, California (which is my hometown) to Yuba City, California back to Oroville. In Yuba City depression got worse, suicide was a constant thought, I had no friends, my family was broken my parents split up multiple times and got back together during these 4 years and even before then. No one seemed to notice what I was going through. I hid myself in a coat closet. I didn’t have a room but where we were staying they had a closet that I put a baby bed in and slept in for months. That’s when music became such a big part in my life I had always loved music, I sing but now it meant more to me than anything at this time. No one noticed my pain, or tears apparently I was just that good at hiding it. Then back to oroville we went again.. That’s when it got worse than I thought it could. My dad told me to go kill myself my own dad at 16 told me to kill myself and said “do you think it will affect me” and i thought that it would be easier on my parents financially to not have me around all they’d have to do is provide for my sister. So February 2014 I attempted to take pills but I couldn’t do it I don’t know why I just couldn’t. After that I had thought of myself as a failure, I’d given up on God because how could he put me through this and let me feel this way. I hated him I was so mad at him I didn’t understand. Then onto Reno, Nevada for the second time, where we lived with my moms friend. This is where I began self harming at first it was small cuts on my stomach the feeling was nothing like I’d ever felt before I was always scared to do it but when I did it for the first time it was an amazing feeling watching the blood run down it was like all my bottled up feeling were running down my skin and it was a great feeling. I continued the small cuts for a while not often just when I needed a release and to start fresh. Then in August of 2014 just after the start of senior year,  I starved myself for a week no food and little water I ended up in the hospital almost had to have surgery. After that insident I began slowly fading drifting away more and more to a dark place where all I had was my thoughts telling myself I was worthless, fat, ugly no one will ever love me, if I kill myself no one will notice. I had gone about six months without self harming it was around Christmas time I did it again and it was the worst I had ever done it. Me and my mom had gotten in a fight and that night on the shower I broke my razor and started cutting my stomach and my thighs before I could put thought into I couldn’t stop myself and when I looked down the shower was covered in blood over 30 cuts cover my stomach and thigh. I told my best friend and she got mad at me then the next day at school she came and picked me up and held for 10 minutes while I cried to her. After my cuts had started healing I made the decision to tell my mom, that’s wasn’t a good idea. I had show her and she got mad at me and said it was stupid of me to do and I asked her for help and she said we needed to wait til after the holidays because if we told my dad it would ruin them. Getting told that made me feel even worse and more low as a person. Slowly over this period of time I stopped going to school. I was in pain and physically drained it hurt to get up and go to school I just couldn’t do it. At the time it didn’t seem like dropping out but that’s what I did I dropped out and let mg depression get the best of me. Finally we told my dad and it went better than I expected but it turned around and got thrown in my face just like everything else he’d always tell me to go cut when he got mad at me.. My mom told me to talk to her when I felt like cutting but I couldn’t cause she just gets mad and doesn’t understand, so either way I’d get yelled at. Then we moved we finally were stable enough to live on our own and I never cut here at our new place. Until one night I got in fight with my mom I told her to go overdose on pills and die, when I’m angry I just say things before I can think its a defense thing I try to hurt you before you hurt me. Then I cut but this time on my wrist so I wore sweater a lot which no one noticed cause I wear sweater a lot. Then this last time I cut May 12th, 2015 I cut my wrist again I just didn’t care what anyone thought anymore yep I was a suicidal self harming depressed freak and I didn’t care anymore. My parents got in a fight and for once the fight wasn’t started cause of me, but my dad drug me into it called me names and I cut like crazy carved fat into my arm and I did it slowly making sure I felt it rip across my skin. I had started going to church again then this. I was talking to a guy at the time he told me cutting was stupid and depression was stupid. Me and him started dating May 16th,2015 and I had never been so happy I was finally happy, I had God, my best friend and my boyfriend. He kept my mind off things soon I stopped going to church I spent all my time with him trying to make him happy give up my best friend, my youth group everything for him. Then July 30th,2015 he broke up with me. I was so heartbroken I loved and still love this man with everything I have. I wanted to cut so bad that day I felt like I failure, he told me I Didn’t make him happy, and my thing is I make people happy, I promised myself of I couldnt be happy I’d make as many people happy as I could, I stopped 3 people from committing suicide, always made sure ever one I talked to knew tbey had me to talk to and they weren’t alone and I didn’t do that with him. But I didn’t cut I fought the urge too there was a few time in the relationship I wanted to cut but he told me if I did he’d leave me and I loved him and didn’t want to lose him so I didn’t. I’ve been 3 months clean, back into church, closer than ever with everyone. Got re saved July 19th, 2015. God works in mysterious ways and through him I now have an amazing church family at Sierra View Baptist Church. For the first time I am at peace with everything and slowly step by step getting happier. I still have bad days its a daily struggle to not harm myself, and to get up but I have a great support system and amazing friends. Philippians 4:13 I can do all things through Christ who gives me strength. I have given it all to God and I just pray. He doesn’t give us what we want but what we need. The power of prayer is like no other. And because of everything I have gone through I now have the power to help others. Self harm is an addiction just like, alcohol and drugs. It is not stupid. I am not ashamed anymore my scars do not define me they are my battle wounds from winning. I still have a long road ahead of me but I’m taking it day by day. I have not received treatment I don’t Think medication should define my happiness I can control it. Like I said I give it all to God and I pray and I have amazing people who listen to me vent and help me through this. I also found music, reading, writing and drawing on myself where I feel like cutting works and through this I have gotten closer with my dad and my mom. They both help me.
Just onow you’re not alone, there are many people who struggle daily and go through things. I have faith that you will get through this and win your battle.
Thank you for reading my story.

This IS Beautiful

Happy August everyone! I thought I would do this week a little different! It is important for ME to not get caught up into this routine that my health has me on. I feel like everything I do is by clocks, medication times, etc.  I need to get off this roller coaster mentally for a week(wish i could stop the yucky poison meds for a week also but they said NO) LOL… So Instead of telling you all about my week, I thought I would write about all the great things that I have done, experienced, visited and all the great people who have been on my Journey this far. This has been some of my Beautiful Life…..

None of these will be in Chronological order.

Rhonda’s and my Thelma and Louise Idaho Trip was Awesome! I highly recommend traveling with friends! We had a blast and even though we grew up there, we found many ways to make new memories! I even got to see a few other important people! She has been by my side for many years and the love I have for her is more than I could ever express. This collection of pictures shows the many trips we took and or visits at each other’s home.  And of course almost every visit ended with a trip to the hospital but with friends like her, hospital visits can be fun…well not really But she did make me laugh through all the tears.

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I have traveled to Washington a few times since finding my son. I love how everything is so green and the smell of wet dirt is great! Not to mention how reconnecting with my first born has been such a huge blessing!

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Traveling to New Mexico was an adventure and even though things did not go as I had hoped, I did get the closure I needed.  If you have not been to White Sands, you should really think about going! New Mexico and Arizona are very beautiful states.

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Santa Ynez is definitely in my top 10 places I have been but it is probably because we were invited by Tyrone Wells!!! This was a trip of a lifetime. Tyrone, Elina and The Sunstone Winery family made many of my dreams come true! No one can take my memory of Tyrone singing a song he wrote for ME from the castles bathroom window. As I said, this trip was super special.

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Speaking of Tyrone Wells, I love seeing him when I can! Here are many pics over the years.  His music is a HUGE inspiration. I am very blessed to call him friend. If you have not heard of him or his music, I highly recommend it!

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I also enjoy Sorensen’s Resort in Hope Valley, ca. It is gorgeous up there during the summer I was there in 2009. I hope to someday stay there during the winter, I heard it is stunning with snow all over the ground. Maybe this year, I will have to ask Santa 😉

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I am also a HUGE 49er FAN, going on 28 years! I stick with them through THICK and THIN!! I have seen them play many times at Candlestick Park and i pray i get to see them this year at the new stadium. Here are some past photos at the games i have been too and the friends and family who i have gone with.

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Spending valuable time with my church family has also been a blessing! I just hope I get many more memorable memories with  them all.

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Since being diagnosed with the BIG disease Brian and I have been traveling seeing a lot of Northern Nevada and Northern Cali. Many of the trips have been with the HOG chapter. I have been having the time of my life even when my body says otherwise!  Getting out for even a few hours once a week or every other week and then paying for it physically for days is SO WORTH IT! I hope this year and maybe next year, depending on my health, brings many more blessings my way. We have a very exciting trip coming up in September and i can’t wait to tell you all about it! GPS is all set with everything we will need including all hospitals from here to our destination! HA!! Got to be prepared 🙂  PLEASE send lots of love and prayers as we go on this 2 week adventure. I really want to show my health who is BOSS! 😉

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Remember through all the Bullshit, all the health problems, all the people who leave, the people who complain, the plans that get cancelled, the sadness, the frustration, the vomiting, the screaming, the emotional roller coaster, the suicidal thoughts, the blood, the tests, the surgeries, the procedures, the INTENSE pain, in other words all the negative crap that comes with any disease terminal or not, just REMEMBER…… “Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.” Deuteronomy 31:6

Goodbye July

Boy has this year flown by..i can’t believe it is already August!! For one moment though let’s step back in time & talk about my last week of July.
Monday July 27th i woke up with a little energy so i took my Fiat in to get it detailed finally( only took me 9 months HA) about an hour after the car getting done I felt very dizzy and decided to lay down for a while. About two hours later I got up and took the dog to the marina to do my 2 mile walk! While I was doing my walk I stopped and said hi to my homeless friend Bill(i know i introduced you all to him last year) this man is very inspiring to me. He reminds me that we NEED very little to live. Which means i am very lucky to have the “wants” i have!! I think all of us are lucky to have the things we have and often we forget. Below is a picture of Bill, one of Bill’s friend and of course my crazy dog Khali 🙂

  
On Tuesday i had to take care of some stuff at the courthouse. Some people that work at the courthouse need to take a class on people skills! I was treated so rudely because i forgot to sign a money order. Seriously??!!   Later after a short nap, we went to our monthly HOG meeting where i got to see some people i wish i saw more of ! Really great people 🙂 Speaking of them, here are the photos from last ride..

  
  🙂 ! 

The rest of tuesday night was spent wide awake crying in pain!! It was a horrible night. You would think after extra pain meds, 2 showers, 2 heating pads and many tears that my body would give me a break BUT NO!!

Wednesday morning i was still awake and in pain. I drank a shake and then realized i had forgotten to take my chemo meds the night before 🙁 OMGoodness!!! I immediately took them and knew that the rest of the day was going to be even worse than last night! I usually take them before bed because as you can imagine they rip your belly up and make you feel awful, so if you take them during the day, you get to feel what normally your sleeping body feels. If that makes sense?! So due to no sleep and now yucky meds Wednesday was a nightmare! I relaxed as much as i could and then went to an orientation which i will discuss in more detail later this month. I then was finally able to sleep 4’hours that night.
Thursday I got up before it got too hot and went to the marina but did not make it very far. I would say I made it to the dog park and then I had to turn around.I was just too exhausted I was using spoons I thought i had. I then went home and lay down. When I got up I actually was able to eat a bagel and a smoothie which is good for me! When the sun went down I cleaned up part of the backyard and then went to bed. If you need some cactus, please ask, mine is really getting OUT of control!! ( i have more)

   
Friday I had to get up early to go pick up my daughters new car and then I went home and went back to bed. 

Saturday I was not feeling very well but I did make it halfway around the marina with Brian and the dog. We then went to the grocery store and then spent the rest of the evening on the couch watching TV. I was in and out most of the night it took everything I had to try and watch even one TV show.  I dislike nights like this! Blek

  
Sunday morning i made it to church which always makes me happy. I love going somewhere and leaving like everyone shared their spoons with me; not to mention the amazing sermon! God is so great!!!  This is Pastor Eric talking about Faith. Great sermon!!  And the ladies picked new Secret Sisters!! I love encouraging eacother via cards/letters of encouragements & fun gifts! 

 After church I went to Trader Joe’s to get some fruit and then fed my cat and dog corn it’s their favorite summer snack!  

I have received a few emails about how much they love how I add an “opinion” section at the end of my week. To be honest I didn’t plan on doing that it just kind of happened and since the majority really likes it I’m going to continue to do it! But please remember everybody has an opinion you don’t have to agree with mine 🙂 

Due to my hectic not feeling good week I’m not going to be doing my opinion section this post but hopefully will be doing one next week. 

However, This week I wanted to touch base on the spoon theory and the video that I did a week ago. I recieved many letters, texts and emails ! Most I noticed was from people that really didn’t understand the spoon theory but because I did the video, they actually got to see a visual and now they kind of understand. Which is great I feel like I accomplished what I set out to do. One email however asked that I actually do the spoon theory for at least half of my day so I will try to do that this month. Because if you think about it; that’s going to take energy to film me actually doing  the spoon theory. And energy is something I have not had lately. My challenge is still for someone that’s healthy to do the spoon theory for me as I am very very curious on how many spoons you have every day. You can even do half a day as that’s perfectly fine because that’s all I’m going to do. 

Also I met someone this week who is also dealing with a chronic disease and I want to remind everyone to be kind to each other.  Be understanding and to really try to put yourself into the spoon theory because all of us that have a chronic and/or terminal disease can apply this theory. I also want to say that if you’re reading this and you’re struggling with RA or Crohn’s or cancer or tumors or whatever it is you’re dealing with to not give up! God has a higher purpose for us all! Before I began this blog a few years ago I was struggling with wanting to live or die and Then God sent me the Ruby family! God had a plan all along and I am now on this journey that God wants me on. I have so many emails of people telling me that they would have died if it were not for my blog. And to be honest sometimes my blog sounds silly sometimes it makes zero sense to me sometimes I jump from one subject to another but it’s who I am and if it’s touching your life then it is all worth it! So don’t give up!  Love ya x infiniti