This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
 
For the latest News, Weather, & More.....keep scrolling!

The Good, the Bad, & the.....Allergies!

What a day yesterday was. If I could go back and just sleep through it or erase it all together, that would be good! If only, right? It is funny how when things are finally starting to go good......Boom, here comes the bad, and with a vengeance! If it could go wrong yesterday it DID!

The morning was not to bad. I woke up with a headache, which I have been doing pretty good with since my neurologist increased my Topamax. Allergies are in full force and so I suspect this may have something to do with my headache. It was a usual morning....but then, man, did everything just seem to fall apart!

First, I found out that my the application I submitted to The Patient Access Network Foundation never showed up on their system (I faxed it on May 9th). So, my mom took it to work and re-faxed it. When I called to confirm they got the fax I was told they are still not showing the fax and to call back in a couple hours. At this point I was like okay, it will probably show up they are probably just busy and it is sitting on the fax machine (note I have the confirmation page showing the faxed DID go through BOTH times).

Next, I go to sit down at my computer to do some things, and the WHOLE system crashes. I am not sure at this point if I will have lost everything (some things are backed up on a disk, but not the things I have just recently done, ugh!). Did I mention I just did a defrag and disk clean up (monthly ritual) like a week ago! So, I go to restart the computer thinking at first that it was just some kind of error........can't find operating system. WHAT? Okay, no bid deal, right? I have the restore disk. I go to boot from disk and restore......can't find hard drive. I WAS pissed by this point. So, needless to say I think my laptop's hard drive just had seen its day. I am not sure. Fortunately for me, I have a desktop computer (which I need to add an ethernet card to in order to get online, no biggy, I'll have that done today).

By this point yesterday I had had enough with having a bad day! I had just compiled a bunch of documents for my housing inspection...maybe all lost. Now I have to start over, because I had not backed it up yet, because I was not done yet. What a pain. Next week I can take it in to get looked at to see if I can have it fixed. The problem with these things, is anymore, it is almost cheaper to just go buy a new one. It will all just depend on what it turns out to be. If it is just a software problem, that can be done fairly inexpensive. And, if I need a new hard drive only, and everything else is okay, that won't be too bad either because I can get one at Best Buy for anywhere from about $100-$150, then have it installed by my dad's friend Mike who works on computers (if he is able, he is currently out of town). Hopefully it will not be too bad. I much prefer my laptop over my desktop. Don't get me wrong, I love my desktop computer. It is top of the line, but on the days where I have some pain in my back or my legs act up, it is nice to just be able to take the computer with me and sit in a nice comfy chair or on the couch!

About an hour later I heard back regarding my application.......still not there. So, we shipped it off overnight fedex. During this conversation I was notified that they have now started to put people on a waiting list and because my application did not arrive earlier, even if approved, I may be put on the waiting list until more funding becomes available. Now this was enough to just push me over the edge. It is not that I have to be on a waiting list, I am just grateful for the help (if approved). I just hate the idea that I had my application in on May 9th and now all of these other people who submitted theirs later will be ahead of me on the list because the fax was lost. That is just upsetting more than anything to think that I have even more time to wait, more unknowns. It is enough that this whole illness is one BIG unknown. Is it too much to ask for other things in life to go a little smoother? I guess so!

To top the day off....Nate had his counseling yesterday. Great! It did not go too bad, I thought, but when we got home then he started in. I know that when you go through counseling it brings up emotions that are difficult to deal with, therefore it is common to have a reaction around the time of the session (i.e. anger, fear, rage). He has only just begun and so I think that is part of why it is harder for him. He has all of these emotions and finally a way he can learn to get them out, but now he needs to also learn the coping skills to handle those emotions. All in due time. It is a process. I just feel bad for him, I hate to see him get so upset.

He did call and speak to Justin last night though and I thought that was a big step forward for him, to reach out to someone instead of just blowing up (even though he did that first, like I said it will all take time). He has a lot of anger about my illness. He broke down and told me that I have ruined his life because of my illness. That I don't try hard enough to get rid of it and that I need to try harder, he wants our life to be like everyone else's. All understandable.....after all he is 11 years old. It is hard for him to understand all of this, heck, some days I don't understand....and some days I have a real hard time coping myself, so why should he be any different? He shouldn't. Once he calmed down and we were able to talk more about it, I was able to explain that the reason I have made these changes in our lives (moving, not working, going to the doctors "all the time" according to Nate, and taking these meds) are so that I can be here for him, so that we can have a good life together. It is because I am trying SO hard to be healthy so I can take care of him and provide for his needs, along with mine. For the first time I think it somewhat clicked, but I know it is all still very confusing for him.


Justin and I have been talking, and he is considering moving here to help out. I am not sure if he will ever do it but I think it would do Nathan a lot of good to have his dad around full-time. We both just want what is best for Nathan, and Justin missed him too. Plus, when my MS does act up (hopefully not anytime soon) then Nathan would not have to be there for every part of it. He could be somewhat removed from the situation. Granted, Nate lives with me, so he would see it, but it would not be as bad if he had his dad to lean on too. Anyway, who knows if he will ever really move here. His whole family lives in Idaho. Plus, I just don't know if he has it in him to move to be here for Nathan and me. The reality of it is that we talk about it, we have talked about it for a long time now, but it will probably never happen. And, that is okay with me. I would love for Nathan to have him around, but I would never want Justin to do something he would not want to. In my opinion he should only follow through with that type of commitment if he is serious about it and wants to be here. Because if he comes and is resentful, that defeats the purpose and only makes things harder for Nate.

Today is a much better day! It has been quiet, so far. I think it probably will continue to be. I had an appointment this morning for allergy testing, fun! My arms are all red and swollen, yep, I am allergic to EVERYTHING they tested me for. Not really a surprise to me, I have always had allergies. The good news is that this means I am now approved for Xolair, which will hopefully really help my asthma. And, they have decided because of how allergic I am, I get to start allergy shots. So, more injections for me. :( That is okay though, whatever works and makes me feel better, I am ALL for that! Plus, I get to start at the gym today. My membership is all set up and I am ready to go. YEAH!

Nate will be gone tonight, so I will probably do something with my mom. Maybe we will get a movie and have dinner. Not sure yet. He is off to Boy Scout camp tonight. I am sure he will have a lot of fun. Tomorrow will be a good day to get some things done around the house. I really want to tackle Nate's bedroom while he is gone tomorrow. Then, Sunday maybe Nate and I will go do something. A mommy and Nathan day maybe, because some Sunday night....it is time for the Avonex, once again.

Well I hope you all have a good weekend. I suppose for every bad day we have, we need a few good ones, hopefully that will be the case this weekend, so far so good today! Please take care.

2 comments:

mdmhvonpa said...

Damn! I needed a bathroom break just to read the whole thing!

Jaime said...

Sorry about that! It was NOT a good day and I just needed to get a few things off my chest. It was just one of those days where EVERYTHING just went wrong. Hopefully things are going good for you. Take care. Jaime


All personal text & images are protected under copyright law. 2006-2009



About Me

My photo
I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

Do you have a MS Story to tell? Any suggestions, ideas to make my blog better? I would love to hear from you. Please send me an Email.....

Click to Contact Me Now!

Sign my Guestbook from Bravenet.comFree Tell A Friend from Bravenet.com

MS Advocacy

More About ME!

Previous Posts

Brian Games!

Directory of Health Blogs
View blog authority
blogarama - the blog directory
My BlogCatalog BlogRank
Listed on BlogShares
Healthcare 100 - eDrugSearch.com