1st 1/2 dose infusion today, yay! Last 2 nights I pre medicated w/Zyrtec and will do so for the next 3 nights, hydrated with tons of water.💦 Day of-drank more water, arrived at clinic and first Solumedrol is given (partial dose IV), Benadryl (injection) & (2) Tylenols (oral), Saline is run for a bit to clear the line then Ocrevus starts. Slow drip at first, BP & temp are monitored every 1/2 hr. 2hrs in drip speed bumped up. ~3.5 hrs in, still doing great, Ocrevus done infusing!🙌🏻 Bag of saline runs during 1hr monitor phase. 4.5 hrs total-done! Home resting now but feeling well, no negative reactions. *2nd 1/2 dose June 28th. At this time this is my final option, all my eggs in Ocrevus basket.😉 Will update my progress for those interested. Good luck to all! Warrior On!♡
*Update: Day after, I don’t want to jinx myself lol but need to share…I feel amazeee balls today!♡
Ok so I’m overwhelmed, as many of you may know I suffer from medical conditions that limit my normal everyday activities. One that I never thought they would interfere with is my ability to keep a clean, neat & tidy home. Along with my other issues I also suffer from OCD so how could that happen right? OCD is obsessive compulsive disorder, common misconception is that everything around us is always perfect. On the contrary, over the last few years my conditions took a turn and spiraled out of control. When I wasn’t hospitalized I was bedridden, the mess does go on though. Unable to organize or clean instead I watched the untidy mess build up around me and struggled instead with worsening of my anxiety. Although unable to physically take care of things I still obsessed over it all. Unfortunately and fortunately (for them) I suppose lol my daughters do not suffer from OCD so they are ok with it all. They used to be so helpful, growing up they had their chore charts and eventually just knew what to do and took care of it. It was a good beginning teaching them values and responsibilities. As they got older however they suddenly forgot how to do basically everything. Suddenly I’m missing flatware, dinnerware, Tupperware, cookware any type of “ware” they took the easy way out and either tossed or hid it! Whaaat? I know tell me about it, it drives me crazy and I wonder 1 where is my stuff and 2 what the hell is wrong with them?? Who does that? Well let me tell you, entitled BRATS that’s who. They’re older, all I started expecting of them now is to just keep their rooms clean. When I say their rooms I mean our rooms we let them use. Our girls are now 20, 18 & 14 we’ve dedicated our lives to them and their well being and happiness but we find out now that they feel they’ve “done their time”. (the “adults” that is) Uhh 🙄 oh boy. Ok ladies, if this is prison to you and helping your disabled mom is so difficult well then hey, your prison terms have ended so you are FREE! Ohh you don’t mean it in “that way” ha of course you don’t. Free room & board, free food, transport etc. right why would you mean it “that way”? Ha so I’m a mom here to say “I am over it”! Over being disrespected and made to feel less than. I literally “DID MY TIME” you bratty adult children. Get your acts together because things won’t continue on this path. I’ve hired people to clean my home, yup with 3 healthy able bodied daughters too I had no choice. This is my life. They will not be booted, they will have access to their rooms and that’s it. I will not pick up after them or pay too either. If you can relate to this, I’m so sorry. If you can’t, hang on tight and express your expectations to your children as it will be in their best interest to not only learn values & responsibilities but to continue them through life. Don’t let your kids walk on you, it hurts.
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I have been on quite the journey in treating my MS, over time I have tried and failed many forms of treatment. Although I suffer from a more aggressive form of MS and my options of treatment have only become much more limited over time but I haven’t given up hope that I will find one that works. I have been on Copaxone, Rebif & Avonex when I first started out about 12 yrs ago. Upon becoming paralyzed my drs admitted me and tried Plasmapheresis (blood exchange) it was successful! I was carried in but walked out in the end. When it hit me again not even a year later I was brought back in where they surgically placed a permanent line called a Tunneled Vascular Catheter in my jugular vein, we would be performing Plasmapheresis more often as needed. Shortly after placing my line and beginning this very aggressive and more intensive procedure it was decided that I would begin doing it monthly as a maintenance. I was termed “chronically symptomatic” and they felt it was the best approach. Although my lines didn’t always hold up and I required multiple surgeries to replace them it was in fact my best decision for my disease, the only thing that slowed it down. I remained on that therapy for over 7 yrs until I was no longer benefiting from it. Talk of replacing my line and becoming even more aggressive with it was happening but o wanted to move on, give my body a break. I had it removed and finally decided to give Tysabri a chance. I had to stop allowing my fear of what ifs control my decisions. About a year ago I went down the Tysabri path, it was not effective enough for me. Where do we go from here? My team of Drs were stumped but luckily a new drug intended for PPMS (Primary Progressive Multiple Sclerosis) *types of MS was released to the general population after 6+ years in trial. Now my first thought was NOPE, No ty! I don’t take newly released meds for at least a year if not longer. I was left with this, I don’t have the luxury to wait. I of course can do what I want but it was not advisable for me to wait it out. So I’m going down the Ocrevus path. I signed up and was approved instantly, I did a 6wk washout and will be getting my first half dose June 14th. The first 2 doses are half doses 2 wks apart to get my body used to the drug. After that one infusion every 6 mos. in between my Drs decided I will continue Acthar Gel Injections to help manage my symptoms, I have yet to experience stability of my MS on a DMD but an hopeful it can and will happen it may also be the answer for my Lupus as well. I am nervous but mostly so excited to continue adding to my journey, I will continue living life to the fullest and as positive as possible. ♡
With the support my family, I can do anything and because of them & their love, I will do everything.
Open letter to my love…
I am tired. I know you try to understand. You see me go to sleep, you see me wake up. Each and every day is a struggle for me in some other way. Today I might have a hard time holding my head up. Tomorrow I might have a hard time bending over to pick up something I have dropped, and I will drop something often. I am tired. I am tired of being held captive by the monsters that have my mind and body in their steely grip. I never know what kind of day it’s going to be, and I never know what I may be able to accomplish today if anything at all. I may not always be able to think clearly enough to help you with things or the girls with their homework, remember to pay a bill or sometimes even pay one twice! I may forget to stir the food on the stove or take it out of the oven and maybe it will burn. Of course you understand so this will never bother you but it upsets me, because I feel that I’m not doing a good job of taking care of you. I am tired. I am tired of smiling and pretending that everything is okay when inside I feel like crying. At times I hide my deepest feelings inside myself because there’s nothing you can do and I don’t want you suffering for me, this is one thing you just can’t fix. I love that you take the time to understand how difficult each day, each task is for me. Although I am tired of fighting a battle that I feel we may never win, we can’t and won’t stop. I do the very best that I can every day, still not ahead. It feels at times that its never enough. It costs precious energy that I cannot spare to keep fighting and I’d rather save that energy so that I can spend time with you. It might not be a lot of time, but I try to make it quality happy time. I try not to complain, no matter how much pain I may be in or how tired I am. But I am so very tired… I am tired of being sick. I wish that things could go back to the way they were before but I know they can’t. I am sorry I’m not the person you used to know or the happy fun mom that I used to be. No matter how hard I try, that person is lost. All you have left is the person who fights to remain strong, the person that sometimes needs help for the smallest of tasks, the person who has now become your fight too. I’m so grateful that you still look at me with that same loving stare, can laugh at my dumb jokes, are the best husband/father ever and just love me unconditionally. I am just so very tired and…I know you are too. We are tired. I am so happy that we at least have each other to be forever happily tired…together.
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