Let me begin by apologizing for any typos- I am somewhat exhausted, short on time and using Dragon Dictation that sometimes jarbles my thick southern accent!
I hope everybody had a fantastic Easter! Personally, it has been a very busy couple of days! Saturday, I had some friends over where we spent many hours playing trivia game called ‘You Don't Know Jack' on the Wii. It was a blast! I was feeling good and smart winning a lot of games until that night when my brother, Kenny, came over and dominated me on the game. He's successfully deflated my ego! On Sunday, my family gathered at my sisters for Easter brunch, despite the fact it was after 1:00 PM! Between two of my sisters, I have four nephews and two nieces between the ages of 5 and 11; needless to say, family gatherings are usually energetic and loud and Easter proves to be no different! After brunch, we had an Easter egg hunt for the children, which was really fun. When I was a child, we had candy in our Easter eggs, but now it is money and candy! I wanted to hunt for eggs myself! I was told if I could reach them, I could keep them. How hilariously cruel is that?! After all the Easter festivities, the children were dying to get in the pool across the street and my aunt and uncle's house. By that point, we were exhausted and decided to call it a day… Besides, I had to challenge Kenny to a rematch to the trivia game on the Wii. Finally after three games, I won one and that was all I needed. You have to understand, Kenny beats me at anything trivia related so to win one was quite the accomplishment! Sunday night I needed to get to bed early because Monday morning we were leaving early to go to Methodist to see my urologist.
As much as I love to go and visit with everybody, seven hour round trip in the car makes for a very long and exhausting day. A few weeks ago, I was having complications with my bladder medicine. Unfortunately, I cannot see just any old urologist; they must be specialized to in spinal cord injury patients. Luckily, I was referred to a doctor down here for future issues. My medicine was increased because of bladder spasms and my doctor spoke to me about considering bladder augmentation. As of right now, every 4 to 6 hours I have to get back in bed to catheterize. You can probably imagine how big of a pain this is! I have to schedule my whole day around it, not to mention the process of getting in the Hoyer lift to get in and out of bed. A bladder augmentation would enlarge my bladder to enable me to hold more liquid. In addition, he wants me to consider a procedure that would allow me to catheterize through my appendix. I know this sounds quite odd, when he first mentioned it to me I thought I misheard him. After getting advice from another female quadriplegic, I realized how much independence this would really give me! Not only would I be able to do it myself but I would not even have to get out of my chair. This will also cut down on the number of possible infections you can acquire from in and out catheterizer. They recommend you wait until at least a year post injury for this surgery, so it won't be anytime soon. Apparently, the recovery is pretty harsh, but I know if I have already overcome this much so I know I can push through that too!
As of this moment, Tuesday, April 26, at almost 5:00, I have about 1700 followers on www.facebook.com/rehabforkaty page. The response has truly been phenomenal! The Southern Belle T-shirt fundraiser has gone above and beyond anything I expected. We have even sold a shirt in Boston, Mass.! The deadline is Sunday, May 15; please keep in mind if you are mailing your order to calculate enough time for its arrival. Mailing out on May 10 should allow enough time. Laura, the fundraiser coordinator, will place the order with Southern Belle Monday, May 16. It will take about three weeks for the shirts to arrive. I asked everybody to please be patient, this will be a very large order that Laura, and people who have volunteered to help, will have to organize and sort out in order to distribute. When it becomes closer to the time of arrival, we will post all the details on the Facebook page. I believe at the moment we are considering having a large pickup date at the Beach Park in Pascagoula. Keep in mind if you are doing a group order form, YOU, the seller, are completely responsible for picking up your bulk order and distributing them to the right people. We are trying to make this process as simple as possible and appreciate the cooperation. The order forms can be found at www.rehabforkaty.formyfriends.org, along with links to my radio interviews, YouTube channel, and PayPal donations. Also, Saturday, May 14, there is going to be a benefit at Thunder's Tavern in Pascagoula. At the moment, all I know is that it begins at 12 PM, catfish plates will be served, the pool and patio will be open, and so far there are four bands scheduled to perform. As soon as I know more details you will too. Another positive thing that has come out of the Facebook page has been meeting other female quadriplegic's who I can talk to. It seems like here on the Gulf coast it is an ‘all boys club’ and while I have no shame, I just find it easier to talk to other girls. You can never have too much peer support.
Speaking of peer support, I was contacted by LIFE of Mississippi. LIFE is an organization that helps people with their disabilities. The nearest location is in Biloxi and in a couple weeks somebody will come to my home to meet with me and assess what I need. They will match me with somebody with a similar injury for peer support and inform me on participating in recreational activities. Apparently, they just recently had a basketball and tennis clinic. I would love to be a part of wheelchair sports! That is part of the reason I am very anxious to get a manual chair. I do not care that I will probably not be any good due to lack of triceps; it will still be a lot of fun! It will also be great to interact with other people with spinal cord injury who have been dealing with it a lot longer than I have. The person I am paired with will also help me to learn how to do self transfers- that will be a major hurdle!! I cannot even explain the excitement or how much independence it will really give me. Once I am able to transfer myself, I no longer have to worry about keeping my mother up late at night and, are you ready for this, think about modifying a vehicle for me to drive!! What a fantastic (and maybe scary) day that will be!! I know it is a long way in the future, but with how fast these 11 months have gone by already, I am sure it will be here in no time.
In my last blog, I mentioned getting the ball rolling with the Disability Rights of Mississippi. It was my advocate who contacted LIFE to contact me. She will also contact the Department of Rehabilitation to make sure I am accepted for the waiver program. The process will probably take a couple months, but it is better than none at all! I also contacted the Shepherd Center in Atlanta, GA, to find out more information on what I need to do to be able to attend their program. It turns out they do accept Mississippi Medicaid, but also mentioned it was one of the hardest states to get approval. As of right now, I still have limited benefits and though I know nothing will happen for a while, at least contact has been made. It is going to be quite a lengthy process and I am going to fight it till the very end! There is no excuse for me not to have full benefits! The lady I spoke with at Shepherd also mentioned loopholes and a scholarship program so I will keep my fingers crossed!
To wrap this up, in case you do not follow the Facebook page, I had a follow-up segment with WHIL 91.3 out of Mobile, AL. If you missed it, you can hear it at www.rehabforkaty.formfriends.org, towards the bottom of the page. I also had a short interview with Magic 93.7, we are still waiting on the audio file and once we receive it, it will also go on the resource page. There is a new YouTube video explaining my Bioness exercises, hopefully I will post another video before the week is over. And stay tuned because this Thursday, the Mississippi Press will be doing an interview with me as well. As soon as it is posted online, we will of course link it to the resource page, the Facebook page, and I will post it on this blog. I think I just about covered everything! Thanks again for your continued support and interest in my recovery. God bless!
ps- here are a couple photos of my therapists and me yesterday at Methodist Rehab
|Michael, my physical therapist.|
|Courtney, my recreational therapist and Candace, my occupational therapist.|