Please help SAVE MY LIFE!

May 19, 2013

on May 19, 2013


 Well, it is getting so close to the end of the month of May and you know what that means?  The Mayo Clinic is just around the corner.  So many things have been occurring lately, so I just wanted to share some things with you… especially since I have been feeling worse than usual.  I wanted to share it with you too just in case something happened because there are so many times I don’t know where I will be in the morning (in the hospital or at home), or even if I will be still on this earth because of how badly I have been feeling. So at least I know that I have kept you somewhat up-to-date about what has been occurring and you won’t be left wondering.  I am also not feeling well tonight, so I was hoping that writing to you would take my mind off of all that is happening and would help pass the time since the nights are so long and lonely and excruciatingly painful.

 The pain has really gotten really horrible and unbearable.   I am trying to hang on but it is really getting difficult.  I keep holding on hoping that something ‘good’ is going to happen, but it is really getting hard to do so… especially when things are so unbearable lately.  My body I really deteriorating, and I am in more pain than ever. I suffer 24/7 and never get a rest from it. I have been suffering so much that all I want to do is sometimes take meds and more meds… just to get out of the pain, even when I max out on them. However, what stops me from actually doing it is that I am in too much pain to actually get off the couch to do it. 

 Between the change of weather and then the accident, it really has taken a HUGE toll on me and really has made things so much worse.  I suffer in pain from the very surface of my skin to the deep core of my bones. I am either too hot or too cold, and that only leads to further exacerbation of my illness.  When I am too hot, I can’t get any relief because I can’t sweat and therefore I get a blister feeling all throughout my body and when I am too cold, I can’t really warm up because I can’t put on extra clothing or use a blanket because I am too hypersensitive to pain.  In fact, I can’t even sleep with a blanket. 

 ImageLiving with me is so complicated because I need everything ‘perfect.’  I need the perfect temperature and as a result we cannot open the windows.  I can’t tolerate the humidity and I can’t tolerate the swing in temperature.  So basically I need either the heat or air conditioning on in order to maintain the 72-74 degree weather or I am in even more pain than usual.  I can feel the slightest change and my family calls me a thermometer because they are amazed how I can tell the exact temperature or when there is a change of temperature… even of a degree. It really stinks because this is the time of year when people love to have their windows open so that they can get fresh air.  However, we can’t have that in my house because of my illness.   To make matters worse, when I need the air condition on, they have to make sure that it doesn’t blow on me because that also causes me extreme pain. 

I can’t do anything without suffering.  I can’t eat, sleep, go out, etc. without suffering. Not only am I suffering from pain, but I also can’t eat either.  It has gotten to the point that even the few things that I can eat (the egg whites and ices) has become impossible.  The osteonecrosis is really affecting me.  I am getting more and more lesions in my mouth and having the bones protrude through them, which makes it even more impossible to eat on top of the severe pain from all the GI issues I have.  My stomach has been giving me debilitating pain that I have been laying on the couch all curled up lately because that is all I can do.  I am also having a really hard time going to the bathroom lately and it feels like I have a blockage.  My stomach keeps getting very distended, which makes it even more unbearable to breathe and move.  It is like I need someone to “pop” me.  I also have been gurgling a lot and my stomach has been making these weirdest noises like there is a whole in them and such. 

 ImageNot only am I suffering physically, but I am also suffering emotionally as well.   I hate looking into the mirror because I look like the creature from the black lagoon.  I look emaciated and look worse than someone from a concentration camp.  I am so thin that you can basically see every bone protruding in my body… from my skull all throughout my body to my legs.  There is no muscle tone left on me anymore and the skin basically just sags on me.  I look like a stegosaurus because my spine protrudes like the spikes on the back of a stegosaurus.   I change colors like a chameleon and it has gotten so bad that my legs don’t even resume a somewhat normal coloration when elevated.  The doctors are even afraid that my left leg might have to be amputated if it gets infected because of how badly it looks.  Thank goodness for clothes and makeup because at least when I am around people I can try to hide all the ‘scariness’ of me.  I can look somewhat normal with clothes and makeup.  I always try to wear clothes and makeup that make me look my best because I don’t like people seeing the REAL me because it is too scary and also because you feel your best when you look your best.  So I hope that I always will feel better when I look better.

 The worst part of it all is that my memory hasn’t been doing very well.  Out of all the things, I never thought my memory would go.  I used to have photographic memory and now my memory is really bad.  I used to have an ambition to become a doctor so that I could help others.  Even though I would love to still become that, I wonder if that is still possible.  People say that the memory problems is probably because that I have ‘too much on my mind’ and because of the medication.  However, I wonder if that is really true and wonder if my memory will really come back if and when I get better.  Even though I was robbed of so much by this disease, I never thought it would take that as well.  

 I recently went to the Orthopedist because I have been in tremendous pain especially since after the accident and we had to rule out any fractures.  Of course though if there was any fractures there really wouldn’t be anything really that they could do anyway because with my illness they can’t put a cast on or immobilize a limb because that would only spread my illness and make it worse.  But we had to know so we knew exactly what we were dealing with especially since I have been having cramps and spasms in my back and it has been making it extra hard to breathe.  They wanted to make sure it was really just due to my illness and not because of anything else.  Well, after taking the x-rays and such, we found out that not only do I have severe osteoporosis throughout my body, but they think I might have a small crack in my bone in my left leg.  But like I said before, they can’t do anything because of my illness.  So we just have to leave it alone.  

 Wanna hear something though?  When I went to the doctor, the doctor asked me if I went to the hospital to get checked out because of the accident.  When I told him that I didn’t, he was like “Good call because it isn’t like they could have done anything anyway.”  I was kinda glad he said that because at least he confirmed that I made the right decision. 

 Speaking of the osteoporosis though, I knew that I had severe osteoporosis.  That is why I have been having those bone infusions.  However, they think that the bone infusions are partially responsible for the osteonecrosis.  I am now in a dilemma because I am due for another bone infusion and we don’t know if I should go for it because of that fact of possibility making the osteonecrosis worse.  I need the bone infusion more than ever because of the osteoporosis and the doctors are afraid that I am going to get a life-threatening fracture, but I can’t afford for the osteonecrosis to be made worse.  You know?  So I don’t know what to do because even with the infusions I have been losing a lot of bone.  I did have a great reaction to it initially.  On the first dose I ever took it grew back like 30% of bone.  However, since that first dose I have been decreasing in bone even with the doses.  Yet, the doctors claim it would be a lot worse without the infusions.  So I don’t know what to do.  I just know I have to make a decision soon because I am due for it.

 Well… let me tell you the very latest, which was the real reason that I wanted to write! To begin with, it is this time next week that I will hopefully be leaving for the Mayo Clinic in Minnesota.  I really hope we get to go, but I am not going to be counting on going until we are physically on the plane and headed to the hospital next week because anything can happen in the meantime. Even though appointments are already scheduled, the hotel is already reserved, plane tickets are bought, etc. I don’t count on going until we are physically on the plane because anything can happen in the meantime and I have learned so many times to be disappointed because things just have a way of occurring and ruining things.  I don’t count my chickens anymore before they hatch.

 In fact, I am lucky that I looked at the plane tickets today to be honest with you because if I didn’t, I would not be going to the Mayo Clinic.  With everything occurring, I booked the wrong tickets for the plane.  I don’t know how I did it, but with everything occurring with me (between my illness and having all these troubles with finances and trying to find help and such), I made such a huge mistake.  In fact, if I didn’t check the tickets, I would have been flying to Rochester, New York instead of Rochester, Minnesota.

 I just can’t believe what I did.  I can’t believe I could make a mistake like that.  That isn’t a minor mistake either.  I would have ended up going to another part of New York instead of flying halfway across the country to the Mayo Clinic in Minnesota.  Apparently when I saw “Rochester,” I thought it said Minnesota instead of New York.  Stupid me!!  I don’t know how I could make a HUGE mistake like that.  It only showed one thing that I have way too much on my plate and I can’t do it anymore.  When I realized what I did today because I was getting things organized and getting the flight information prepared so that we can get people to take us to and from the airport, I totally freaked out because I knew how close it was to leaving for the trip and how big of a mistake this was. It got worse too especially when I found out even worse news… the airline we were flying doesn’t fly to the place we need to go.  Of course it also had to happen on the weekend too so nothing was open.  I couldn’t call the hospital to find out information about what to do because the concierge desk was closed, and I couldn’t call a lot of other people to see what to do because of the fact of it being a weekend.  I knew how important it was to get these tickets changed because we needed to get to the Mayo Clinic and yet, everything it was a Saturday and everything was closed. 

 I totally lost it when I found out that the airline that we were flying didn’t fly to Rochester, Minnesota, which was the destination that we needed since that was where the hospital is located.  The closest the airline would get me is to Minneapolis, Minnesota, which is about 80 miles from the hospital.  I had to stay with the airline that I had because I had the tickets already.  Plus, if we could get new tickets for a different airline, it really paid to stay with this airline because the airline we are traveling, which is Southwest, is the only airline that doesn’t charge us if there is a change in itinery.  With me, that is so important because I can’t begin to tell you how many times we have had to change the plane arrangements whether it is because we have to come home early or later (we finish up earlier than expected or need more time), or whether we have to delay the entire trip because I get sick or because of financial reasons or something. Sometimes if we finish earlier than expected, we like to come home earlier than waiting it out because there is nothing else to do and why pay for a hotel stay that is not needed.  This way we could go home earlier and my dad and I could get back to our normal lives and my dad can get back to work instead of paying the extra money for the extra hotel days that are not needed.  However, if we went with a different airline, we would be forced to stay there and pay for the hotel because not only will there be a change of itinery fee, but to change the tickets to an earlier date it usually costs mega money.  The current airline that we are on is the only airline that doesn’t charge for the change in itinery or have a fee difference even if changing to a different day. 

 Of course there were different options that we could have done, but everything turned out to be so expensive.  I was really freaking out because I thought that everything was taken care of already with the finances, as I thought everything was basically ‘paid’ for in terms of getting there (the plane tickets). Now I realized that there was going to be extra costs already, which was money we didn’t have because we were already going to the Mayo Clinic on limited funds because we didn’t have extra money on hand. 

 One option that was a possibility was to fly to Minneapolis on the current tickets that we had and then take a shuttle flight to the remainder of the distance to Rochester.  Of course that would mean buying a new set of tickets on another airline to take us from Minneapolis to Rochester, which would mean more money.  It probably would honestly have been one of the better options because I can’t really sit in a car and travel 80 miles because that is a 2-hour drive almost and it isn’t like I won’t be traveling prior to that trip either. I would have already suffered the trip on the plane to Minneapolis, and the trip there will probably have killed me already.  Traveling is definitely not easy on me and it really takes a HUGE toll on me.  I am really hypersensitive and therefore, I really get hit hard when we have to ‘travel.’  Not only do I suffer in pain more than usual, but it also really wears me out both physically and emotionally.  We already had a stopover when we went to Minneapolis, so we already had a huge commute there instead of it just being a hop over there.  A simple nonstop trip that could be reachable in a possible 3 hours is taking us close 5 hours and will have a stopover too.  But you gotta do what you gotta do to get tickets that we can afford.  But to have gone through all that traveling and then to first have to travel by car another 2-hours, it really is going to be mega suffering on me.

 However, we really didn’t have a choice but to drive.  When we priced flying from Minneapolis to Rochester, they wanted close to $400 per a person even though it was so close.  I don’t know if it was because it was last minute or anything, but it was just way too much to be bothered with. Plus, when we thought about it too, it wasn’t a great idea because if we did have to change the itinery, we would run into more money too because even though the flight from Minneapolis to New York would be covered, the flight from Minneapolis to Rochester wouldn’t be. 

 As there was no other option but to drive, we priced renting out a car and that too was expensive. We really didn’t need a rental car while we were there because everything that we need to do is local and in the area.  Even if we need to go somewhere, the hotel staff said they would have transportation available for us because everything (whether it is go to the hospital, sightsee, etc.) is all in the area.  So since a car is totally not necessary, we figured we would take the car from the airport to Rochester and leave the car there.  Then when we need it again, we would pick the car up and drive it back to the Minneapolis.  This way we could avoid accruing the cost of the car while we were there since we didn’t need it and we wouldn’t have to pay for parking at the hotel for it either.  However, they wanted like $200 for the day.  Could you believe it?

 I was really freaking out because we didn’t have really that much money to ‘play’ around with.  I then contacted the Mayo Clinic to ask for some other options because my friend told me that they might have an option since they are not like any other hospital, as they ‘cater’ really to the patients and try to help them out as much as possible.  When I contacted them, the concierge desk was closed since it was a Saturday and even though they really wasn’t supposed to help me because the department was closed, the person that I spoke to helped me out anyway because she just happened to be knowledgeable on it.  She told me about a service that they offered that would cost me $55 per person and it would take me from Minneapolis to Rochester.  It wasn’t ‘free,’ but at least it was more doable than spending all that other money and at least if there was a change in itinery, it wouldn’t really be affected either. 

 So, thank goodness that was taken care of.  Now we are basically all set.  Only bad part is that we are going to have to travel the 80 miles.  But, they are sending a van for us and it is supposed to have Wi-Fi, so hopefully between the roominess of the van (it hopefully won’t be as cramped as a car) and the Wi-Fi to keep me busy, it won’t be so bad traveling the 80 miles or close hours to the hotel. I can’t believe that they offer this service from picking us up at the airport all the way to in Minneapolis to bringing us to the very door of our hotel. 

 I guess my friend is right… this is no hospital like the others.  I always knew that this was a TOP hospital in the country and always knew that they only took on the sickest and rarest cases, but I really didn’t quite ‘know’ how out of the way they went for their patients. The Mayo Clinic in Rochester, Minnesota, has been world renowned for the quality, accessibility, and efficiency of its medical care for many decades. For many who travel there, it is their last bastion of hope in finding treatment for a complicated or terminal medical condition. As a result, they want you to feel as comfortable as possible and they make it feel as much as ‘like home’ as possible.  They make it so that you aren’t bored and that it isn’t all about being in the hospital.

 I already told my dad that he is in for a surprise.  I heard how much this hospital is amazing, and I can’t wait to see it.  They are supposed to have these “Care Pages.”  They are computer stations in the reception areas of all the departments of the hospital that you can use free of charge. One great means of keeping people back home posted on a patient’s progress is through Care Pages. Once you are registered as a patient you will be able to access the Mayo Clinic Care Pages website and create your own page about the patient and give updates to family and friends. I don’t know if I am going to use it since I have my own website though.  I will let you know. 

 I also told my dad about the ‘subway’ system that they have there.  I told my dad how underground tunnels basically connect everything there.  Although it is called a “subway,” there really aren’t any trains to be found.  Instead, they are a bustling underground maze lined with numerous gift shops, restaurants, cafes, and gourmet coffee shops, as well as tunnels that connects the Mayo, Gonda and Charlton buildings, and Rochester Methodist Hospital.  At least patients don’t have to worry about the weather outside, which is a big plus for me because since I am so hypersensitive, I get so limited when I can go out because the sun burns me and I can’t tolerate the heat, cold, rain, humidity, etc.  So at least I will get to do things without having to suffer all that extra pain of being on the ‘outside.’  I heard there are many things to do via these underground walkways too including shopping at the mall and restaurants (of course I don’t have to worry about the restaurants though because I can’t eat).  Another thing that we can do is listen to live music performed in the amphitheater. I can’t imagine how I will be able to access all this stuff by going through tunnels. I can’t wait to see everything.    However, I also was told that if the weather permits, one end of the street houses numerous shops, outdoor vendors, manicured gardens, and benches to relax on. I can’t wait to see it all!

 We have traveled to so many doctors and seen so many specialists and we are basically at the bottom of barrel.  You know you are especially sick and desperate when you go to the Mayo Clinic because they only take the ‘sickest’ of patients and patients that can’t be helped other places.  In fact, all appointments are prioritized on the basis of medical need.  Usually, patients have to to wait a few months to be seen unless you are gravely ill or have special circumstances.  Well, I must be in really bad shape because I was given an appointment within 1-½ months.  I guess it really is an emergency when your whole entire body is shutting down and you only weigh close to 60 pounds.  So just keep your fingers crossed that they will be able to help me. If nothing else, maybe I can help others in the future because as this is a ‘research’ hospital, I already signed the consent that they can use my records and data for their research to help others.  So… if I can’t be helped, maybe at least others can benefit from me and not suffer like I am.

 ImageSo… hopefully we will be off to the Mayo Clinic on Monday.  We are supposed to be going for the entire week. I am going with my dad like usual, and my mom will man the fort at home.  I really am going to miss my mom, but I will speak to her frequently on the phone.  I hate how I have to split up my parents.  But they make so many sacrifices just so I can get the treatment I need, which includes being apart.  I am really hoping that they will be able to help me. I am really desperate because I am rapidly deteriorating and if something isn’t done quickly, I am really afraid I am not going to make it much longer.  Even the doctors have said that unless something isn’t done soon and quick, they fear I won’t make it much longer.  I was already told that I definitely won’t make it through the summer with the rate of deterioration that is happening.  Things are just getting horrendous. 

 In addition to going to the Mayo Clinic this upcoming week, I am also most likely going to Georgia.  As I said before I am rapidly deteriorating and really needed the ketamine coma even before I got into the car accident that took place last week.  However, now that I recently got into the accident, the disease has really become worse and exacerbated my illness immensely.  Whereas I was suffering before, I am suffering so much worse now because any trauma to my body can spread and make my disease so much worse, and getting hit by a 18 wheel tractor trailer is really traumatic.  So, whereas I needed the ketamine beforehand, I need it more than ever now.

 Even though I have been getting ketamine every other week in New York, the amount of ketamine that I need is way too great and is not FDA approved in the United States.  As a result, I need to go out-of-the country to get this dose.  Yet, since I can’t get there right now, I am planning on going to Georgia so that I can get a more intensive coma than I am getting in New York.  Although I won’t benefit like I would if I would be getting the coma out of the country, I would be getting a much higher dose than I am currently getting in New York, which will hopefully help me and save me.  Hopefully it will turn things around to a point and help buy me time. 

 Thank goodness I found this doctor. I can’t tell you how much I am grateful for finding out about this doctor because I really need a much higher dose coma immediately.  Knowing how very sick I am, I am fortunate that he won’t make me wait very long for it either.  The doctor seems extremely nice and so does his office staff.  They really have gone out of their way to help me.  Not only is the staff always available to speak to me, but the doctor is as well too.  I was told he has excellent bedside manners and was told that even though I was told in the past that I couldn’t get a pump because I was too ‘small’ and there was no where to put it, I was told that he might be able to put one into me. I am really hoping because that would really help a lot.

 I really need a pump, but unfortunately many doctors told me that I couldn’t get it because I was too small.  I am on very high doses of medication and I get very bad side effects from them.  Not only will a pump make my meds stronger and help me more because intravenous drugs are more potent and work better on me, but hopefully I won’t have as bad as side-effects as I have by taking meds orally.  In addition, whereas the meds I take are compounding the problem of not eating and shutting down my stomach and GI system, hopefully the pump will eliminate or decrease that.  Its bad enough I have the severe autonomic dysfunction and gastroparesis alone… I don’t need the medications compounding the problem.  Also, the pump will make it so that I don’t have to take meds at all either.  You can’t imagine how much that will not only help but be a gift. I take over 50 pills daily and basically eat pills for breakfast, lunch, dinner, and snacks. 

 However, it has gotten to the point that I am having so much trouble taking them due to my illnesses, as I can’t swallow them anymore.  In the past, I have used drinks with carbonation to help get them down, but nowadays that doesn’t even work.  The gastroparesis and autonomic dysfunction has gotten so bad that it really has affected my swallowing and esophagus.  I can’t even swallow them even despite the carbonation and it is basically a battle to even get one pill down let alone all of them (over 50).  I am having such difficulty swallowing that even getting down ice pops is difficult.  It would be so great not to have to worry about swallowing them anymore because I won’t have to worry about worrying about what time it is because since I have so many pills I take, it seems like I am always watching the clock because I have to take the medication and I won’t have also have to choke them down.  It would be a blessing to get this pump.

 So I am hoping not only that this doctor will be able to help with the ketamine, but hoping that he will be able to help with the pump as well.  I was told that the doctor put in a pump in a person that was barely 80 pounds because she couldn’t eat and such, so he is familiar in putting in pumps in people that there is ‘no room’ for them in.  Of course they weren’t as small as me, but hopefully he can still work his magic. 

 If all goes well, we are supposed to be going to Georgia the week of June 10th.  However, I really need all the help I can get with donations.  We have been really having a hard time in that area because the bills are out-of-control.  I am really deteriorating and my dad keeps walking around the house saying how I ‘belong in a hospital,’ but to be honest with you… we can’t even afford it.  Any help that anyone can give would be much appreciated because it isn’t like I can be hospitalized in a local hospital either.  We would have to travel to another state to be hospitalized because the hospitals here in New York can’t handle my situation.  So not only would we have to worry about all the copayments of the hospital (I can’t believe how much it would clearly add up $150 per day + $200 for emergency room + $100 for each scan and procedure), but we would have to worry about the cost of the hotel too because my dad would of course need some place to stay.  Gosh… I always wonder what it would be like if money didn’t exist.

 I have tried so much to try to raise funds.  Lately I have tried again to reach out to the media and some celebrities.  I know that unless I get my story out there, no one is really going to know about it and I won’t really get the help that I need.  That is why I need you to help me as much as possible to get my website known because I am not having luck in getting the attention with the media because you know the saying “it isn’t what you know, it is who you know,” and unfortunately I don’t know anyone.  But, I figured it would be worth a try again to try to reach out and see if they would hear my story.  I have also tried contacting some TV shows including ELLEN DEGENERES, LIVE WITH KELLY AND MICHAEL, THE STEVE HARVEY SHOW, DR. PHIL, THE DOCTORS, DR. OZ, THE TODAY SHOW, etc.  I see so many people on those shows getting help, and I am hoping that I might be as fortunate. 

 I have also tried to reach out to my local fire department.  I don’t know if anything will come about, but I am keeping my fingers crossed.  I will let you know if anything does.  In the meantime though, I really was quite surprised to get an email from a very well known author.  One of my friends surprised me and contacted one my favorite authors of all times and she actually wrote me a personal email.  I couldn’t believe it.  I can never thank my friend enough for that.

 I couldn’t believe that Jodi Picoult contacted me. She is one of my favorite authors.  I love all her books.  I don’t know if you ever heard of her but she has written such phenomenal and famous books as “The Storyteller,” “My Sister’s Keeper,” “Lone Wolf,” “Between the Lines,” “Change of Heart,” “The Pact,” and more.  She has written over 20 books and some have even become a movie like “My Sister’s Keeper!”  She was willing and did let others know about me through her Facebook page and also tweeted about me.  I can’t thank her enough.  Perhaps through her, others will become knowledgeable about me and my website and maybe I can also receive further help.  Even if the people cannot donate, at least they will become aware of me and all that is happening to me. If nothing else, at least I want attention to all that is happening to me because even if I can’t be helped personally, maybe I can help others. I can show people never to take anything for granted because in a heartbeat it can be taken away from you and always appreciate what you have because you never know when you won’t have it.  I never thought that I would never be able to walk, eat, take a shower, be touched, etc.  After all, these are basic functions of life.  I can also show people that as long as you have your ‘health,’ you have everything… so when people think that things are horrible in their lives, let them realize that things aren’t really as bad as they think as long as they have their health!     So, if you look at her Facebook page, you will see a mention of me. 

 I also want to share a little something with you.  I have been seeing ghosts and telling my parents that I saw my grandma who had passed away.  We were extremely close and we were supposed to be there for one another and stay alive for each other.  We called each other ‘peanut butter and jelly!’  However, she passed away last year.  Anyway, my parents always said it was the drugs that I was on and even though they said they ‘believed’ me, they really didn’t.   But they finally believe me now after all that has happened in the last few days.

Image My grandma’s room is totally empty. It has been empty for over a year and there is nothing that remains of hers.  Everything is stripped down to the bare furniture and not even the mattress is in the room.  Anyway, I was in the room the other day and my dog kept going onto the bed and going to where she laid and was whimpering.  He then laid down right where she usually did and remained there.  It was totally weird because he never did something like that before.  To make it ever weirder, the other day my dad was downstairs and he heard crying.  Well, he we went into my grandma’s room because that was where the crying was coming from and this time he saw my cat exactly on the same place on the bed crying.  How weird is that?  Now my dad totally believes something is going on and my grandma is here. After all, she said she would never leave my side!

Image Well, I guess I better get going because I am not feeling well and I should rest.  Tomorrow my mom and I are supposed to plant the present I bought her last week for Mother’s Day.  I bought her a plant in a watering can.  It is sitting on our mantle and we are planting it in a wine barrel that sits by our door on the porch. They are supposed to bloom every year.  I bought it for her so that every year that they bloom, she can remember me. 

 The next few days are going to be super busy because I have to get everything situated for Minnesota.  I want to download a few movies, games, books, etc. for my iPad so that we will have something to do on the plane because those trips can be long and boring.  At least it will give us something to do.  If you have any suggestions, please let me know.  Even though it is going to be a long trip to Minnesota and hard on me, at least I am going with my dad and will get to spend some nice quality one-on-one time with him.  I love being with him.  If it wasn’t for him, I certainly wouldn’t be here today.  He is not only my dad, but he is my best friend and hero.  It hurts him so much that he can’t do anything to make me well.  Everyone knows that if something happened to me, he would never get over it.  That is one reason I am holding on so long… I am holding on for my dad! 

 In fact, it worries me that he works so hard just to try to get me well. He works 7 days a week just to try to get enough money for us and to try to get his business to survive.  He is always so tired, and I can’t blame him because he is up at 3 AM and out of the house by 4 and then not home til close to 7 PM.  I am so worried about him because it isn’t like he just sits in the office, but he is constantly running around, as his job is all physical work basically and he is no youngster.    I just don’t want anything to happen to him because he isn’t a youngster and he never rests.  That is one more reason why I am glad that he coming with me to Minneapolis.  At least he will get a somewhat ‘mini vacation’ and hopefully be able to rest a little.  He really can use it.  After all, when I go for my ketamine treatments, he also uses that time to ‘sleep’ too.  I only wish I could make it better for him and he didn’t have to work so hard because he is at the point in his life where he should be able to take a easy and enjoy himself a bit.    

 I hope that everything is good with you.  I can’t believe that the unofficial start of the summer is next weekend.  If only the weather would be more like it.  I will keep you all posted on what is going on.  If you can think of anything to help with raising money, please let me know.  Thanks so much for everything.  Until next time!




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