An Update

Well it is November 28th 2010 and I leave for Los Cabos in 7 days, the countdown is on. I spoke with my Neurologists office the other day and they had nothing to good to say. I told her I was not sure if I would be able to get the treatment or not, as I am unable to come up with the funds but that if nothing else I would be going there and speaking with the doctors involved. I also told her I was scared and to that she replied with "why are you considering it if you are afraid" to which I said "it is my only real option to try to get my life back". At that point she must off thought I was a bit weak because she then told me that my MS clinic has seen several complications due to angioplasty for CCSVI including one person with a stroke that is in the hospital right now. I got off the phone and thought about it for a while and all it did was make me want to do it more. I was fibbing to her when I said I may not go through with it, my bad, I am going to do it I am very excited and nervous about it but I am going to do it, next week as a matter of fact. Wish me luck.

Now to get everything in order before we go has been a bit of a challenge, I have all my shots and prescriptions, but I am sure I have plenty more to do including packing for Stacy. We are leaving at such a cold time of the year and even that has me a bit worried for my house and pets. Hopefully it all goes well. I sure hope one of the things that improves for me is my cognitive functions, because I have been meaning to write this blog for several days now, I just am having a hard time getting it together. A couple of other things that would be nice are to lose the fatigue it is overwhelming and maybe if I am lucky get my balance back or lose the vertigo. I have nothing but great thoughts for this. On the other hand I am realistic and understand I may be one of the people that does not see much improvement. Trying to explain that to my friends has been a bit challenging, most of them think it will be the end of my problems I think it is a good reason to take better care of my life. Some have even asked me why I would do it if I am not sure it will help me? All I can say is I know where I am heading if I don't.

Anyway I may not write until I have had the procedure done so sometime in the first couple of weeks in December. Till then play safe and Take Care.

Ang

Puzzled

I was told a couple of weeks ago to phone this lady in my home town because she was going to Mexico for angioplasty and she knows everything about it. Even though I have been researching this since November of last year I thought maybe she knew something I didn't. I didn't call her till I had another friend show up at house and told me she knew someone I should talk to that this person was going to Mexico for angioplasty. I thought well maybe, but then she told me the lady's name and guess what it was the same lady but I still was in no hurry to call her. Finally I thought I should give her a call and see what my friends were talking about. So happens when I called her she was getting ready to head out the door so I gave her my phone number wished her best results in Mexico and asked her to call me when she gets back. The conversation was short and I was surprised at how easy it was.

Then two days later she called back she sounds like a nice enough person but then when it was to late to get out of the conversation, short of being rude, she started talking very loud almost yelling at me. Now I have heard about hearing problems with MS but never noticed it like this. I tried to talk to her but every time I would start talking she would loudly interupt me. When I finally got off the phone I felt like I had just had confrontation with her even though we hadn't had one because everything I said to her she told me I was wrong. I told her that there was one approved study in Canada where the government was going to consider the results, Dr. Haake blood quantification study, she told me I was wrong and that they are going to do the procedure at UBC and Dr. Haake she hadn't even heard of so asked her if she knew who Dr. Godley was and guess what she never heard of him either. I asked her if it was a neuro doing it or IR and Vascular doctors doing it she then told me she was in the study and it is a genetic specialist doing it. Now I do not have a clue what this woman is talking about but I know for sure that a genetic specialist can not and will not be presenting his finding to the government committee that has halted this procedure in Canada. She was reffered by her Neuroligist to see this man we the same Neuro and she knows better than to ask me to go see the guy. I could see a pharmacy company trying to get in on the genetics of why this happens to people but it is simple the only doctors that can make a difference are Vascular surgeons and Inteventional Radioligists. So much for talking to someone else with MS that knows everything. It made me realize why I stay at home and research things online with like minded people that I choose to be friends with.

It turns out she really knows very little, has cog fog quite bad and didn't even book her own procedure someone else did it for her. But she seems to know it all, I hope she doesn't give false hope to too many people. I am still researching as I have a hard time keeping up with it all.

I know I said I would try to write more often and I will, I have been feeling very crappy lately so I had to take a break and really think about what am I going to do. I am happy that I had a bit of time to look at what is really going on in my life, it seems like I have lost control of what should be the best years of my life, I should be working towards a retirement instead I am here wondering whats coming next? Never really knowing.

Through my fear of getting any worse than what I already am I made a decision I am going to get Angioplasty no more procrastinating from me, I am going. I have started one of the fundraisers already and working towards getting the other one going now I have one goal, raise 12,600 so I can get Angioplasty. I don't care if I am broke financially all that really matters is enjoying what little life we humans have so I am going to do what I think is best for me and my quality of life.

I have not always been the best friend or the most compassionate person, but now I am having to ask others to be compassionate towards me so not only am I learning to be humble but I am learning what kindness is and how to display it.

It is kind of ironic that I would end up mixed up in all this MS stuff and the politics that go with it as in the last ten years of my life my main interest is politics, not to be a politician, I see myself more like a whistle blower. I did not try to achieve anything except a job when I was younger (I just didn't know what I wanted) I have always liked helping people and my interests are politics maybe when this is all said and done I will find my place helping others while battling the powers that be. Granted I will need to become an even better person with a much vaster vocabulary but if Angioplasty works for me I want to do it. For the first time in my life I know what I want to do. I still want to help people and that can come in many forms but I feel that what people really need is a great advocate.

Once again thank you for reading, till next time PEACE

Frustration

Well today I woke up went to the bathroom and realized I could not feel anything from my waist down, I was even unable to have a bowel movement because I could not push. I am so frustrated I wish I knew someone who could help me or at least understand. I guess my frustration comes from knowing that even doctors do not know what to do about this short of putting you on lethal doses of steroids. I will learn to deal with it but I do not think my relationship will survive all we really have left is sex as we can no longer do things together as MS has robbed me of so much energy and confidence. My mind is not the same anymore either I am sad all the time, short tempered and nasty I have lost most of my friends over the years partially due to lack of desire and energy, let alone the fact that I am just plain miserable. Also I am sick and tired of having to take care of Money Bags because he can't take care of himself let alone the idea that I am having such a hard time with my own life and health. I feel so stressed out, I feel like I am all by myself with a second person that I have to take care of. (I don't have children) Sometimes I think I would be better off alone but then I realize I would really be all alone because I have managed to lose most people in my life already or should I say pushed them out so they don't know how vulnerable I really am.

Maybe it takes this kind of frustration to make me do something about it I have decided that I am going to go to Los Cabos in December for Angioplasty all I have to do is book my flight and it is done, up to this point I have felt guilty about spending someone else's money on something I am not sure will work, I must have faith that something will work in my favour soon. I am determined to not let the small things stress me out anymore. I am have been stressing about who is going to take care of my 5 lovely pets, spending someones money, mowing the lawn, cooking dinner, keeping my house clean the list goes on and on but I must let go and let someone else stress about it for awhile. I am sorry that this post is more like a rant than a nice post but I look forward to the next one and hope it is allot more positive than this was. Thanks for reading I will try to smile today :)

Angioplasty

OK I am getting serious about this treatment I want it sooner than later unfortunately for me the guy holding all the money can't even give a straight answer when it comes to what he wants for dinner that night. I spoke on the phone to a Doctor in Tijuana and he explained how he will do the procedure and what I could expect for the 4 days I would be there. Like I said earlier unfortunately Money Bags (thats what I call him now) doesn't want to go to Tijuana because it is no fun for him I wish he just wanted me to get better.

I asked last night if I could book the treatment in Los Cabos and and he said and I quote " I don't know" I told him I really need it done because I am getting worse as we speak and Money Bags started asking about other places like I haven't research enough and I need it now not in 10 years when he thinks I should get it. He doesn't understand and refuses to listen or read about it, it frustrates him to do anything that doesn't involve instant pleasure for him. I should cook his goose and book Egypt and see what he says then, if I had control of the money I would go to Egypt and I would take a supportive friend with me not Money Bags he is far to selfish to be there for me throughout this procedure. I am so afraid and all I want is the chance to have the treatment done with no stress just enjoy the moment. I am concerned that I will not be able to enjoy the moment because someone is bored or worse yet be afraid in the hospital and turn to find my support person has left to walk around because he is bored. I can't ask Money Bags to pay for someone else to go in place of him so I have to find the happiness inside and be very brave for myself because I know no one else will be there to hold my hand. That is enough for today.

I have been having a lot of pain lately all because I over did it at the gym, I biked 5 miles and my doctor said I over did it so now I have to take a break from it till the pain goes away in my legs, it has been almost a couple weeks since I overdid it. I have never felt like this before though I am in pain in my hip, knee, and ankle joints, but along with that I am numb from the middle of my back done to my toes on my right side and my left is numb from the knee down. I am bit nervous that I overdid it at the gym and if this is what happens if I do over do it that makes me scared to even go, I want to go so bad as I felt good immediately after the gym but two days later I paid for it. I am terribly afraid of what could happen.

Lets talk about my fear of everything, just a short ten years ago I feared nothing I had tons of friends I was able to find the energy and time to maintain good friendships with all kinds of people now I am lucky to be able to have the energy to leave my home after 6pm.

I think I withdrew myself so much that people think I am being rude and all I want is to have some of my energy back. I really miss who I was before MS ruined my life. I truly hope that I get my balance and personality back after the angioplasty.

Procrastinating November 2010

I have not been here in awhile for several reasons first and most importantly I just plain forget, I don't seem to be able to find the time to get much of anything done for myself or for others. I am unable to make or keep plans with other people and I begin to feel very stressed about the fact that I no longer feel as if I am in control of how my life is going to turn out. I have also been trying extra hard to include certain people in my life but I have found that it is becoming increasingly more difficult. I have also been very busy trying to stop procrastinating about traveling for treatment I have had a few opportunities now and I am down right afraid I am afraid it won't work let alone my fear of the procedure, I know it sounds silly but I am so scarred of needles let alone a catheter in my veins ballooning up.

I have been confirmed with CCSVI and I need treatment as I am getting worse lately I just don't seem to be brave enough to go through with it. I want to so badly but I need some support from people and I can't seem to be able to socialize with people anymore.

I am here today to give an update on my journey and all I can really say is I am trying very hard to get brave enough to do this and I need the treatment soon so I am going to try to write more often with legitimate updates on travel plans and dates for my treatment. Right now I have my feelers out in 3 or 4 locations 5 if you include the one that I fear the most. (due to hygiene)

First two choices are Costa Rica and Los Cabos second choice is Merida, Mexico and above all the one I think will take too long to get into Poland I am on the list and I have stayed up late to call a couple of times but they just can't seem to nail down any dates or even time frames. They haven't even asked me my name when I call so I think I will have to give up on them.

Well that is enough for this two finger typer for today. I promise I will try to write more often.