Hello everyone I haven’t written a blog in a long time and I am trying to get back in the swing of things and do what I love. It’s been a very rough ride suffering with this illness, and extremely stressful. It could be worse, much worse so don’t get me wrong but sometimes we all need to vent and let out our frustrations, which is normal for everybody. I will get you caught up on my forever journey and recent news about my MS.
I have a new Neurologist who I like and get along with just fine, but of course we always don’t agree with everything our providers say or do, but for the most part I like her the best out of al the Neurologist’s I have seen. She wants me to currently only concentrate on getting used to my MS medication which i have been trying to do for the past six months. I am taking Tecfidera one of the newer MS pills that have only been around for about two to three years. Honestly, I stopped taking it about two weeks ago because I am so sick of being sick even from the medication for my illness. It does work well for some but, I have yet to find one that works for me, that my body can tolerate, and that helps my MS. I am due for an MRI, which my Neurologist wants to wait until September to see if the Tedfidera has worked at all considering I have not yet had an OK MRI or shown any improvement, but unfortunately a lot of progression. She has told me that my last MRI was very concerning and she wants to keep me walking and out of s wheel chair, which I clearly want also.
I am waiting for the phone call to schedule my MRI to see if there is any changes and if the Tefidera helped slow the progression. If my MRI shows progression my next step is to try Rebif, which is a 3 times a week injection. Side effects are; flu-like symptoms, suicidal thoughts, depression, fatigue, injection site reactions are the most common. This will be the third MS medication I have tried. I am still not sure what I want to do, either try this medication or take my chances with the MS. The side effects alone is what scares me the most because I have children to take care of and a live to live. Who in their right mind wants to take a medication that has horrible side effects while not knowing for sure if it will even help? Not me! I have decided to try it but if the side effects are miserable, and I have injection site reactions like with the Copaxone I will stop it. For all we know these MS meds may not be doing anything or could be doing more damage. How would we even know? I guess this is something we may never find out.
Below is a picture of my new Rebif injections. These needles are a lot larger than the other ones I took for Copaxone. Luckily I’m not scared of needles considering I have about 32 tattoos!
My last MRI showed progression, active and new lesions, and “black hole,” which are scars where there has been permanent damage in that area of the brain. From my research this could mean I have progressed into secondary progressive or I could have had a form of progressive MS from the start. Every MRI I have had has shown some progression regardless of what MS medication I was on or have tried. I can’t seem to find a Neurologist who will just be honest with me and straight forward about my disease progression and whether or not it’s progressive. I feel like they treat me like a child or an idiot who doesn’t understand anything about this disease and the truth is I may in fact know as much or almost as much as these “Neurologists” do.
I finally have a date to see a Judge for disability. This is not what I planned for my life as most people do not, and not a choice I made but more of an option to live a better life and give my children what they need. People on social security disability are not “abusing the system,” or “just to lazy to work” and every other misinterpretation there may be. Some people are unfortunately not permanently disabled and have the ability to work that do abuse the “system.” These people make others including myself look like lazy scumbags, which is far from the truth. I can’t explain how much I would love to get up every day and go to work, to have money in my pocket and not have to borrow it or have a loved one take care of my living situation (money wise). It sucks and I feel like my independence has been taken from me and its an extremely difficult way to live, having to depend on someone if you want to eat that day or have a home etc… Now due to this debilitating illness (and many others I have been cursed with), I have to stand in front of a judge and beg for my life. I have to prove to a complete stranger how sick I am although I “look good”. Well, I’m happy that I can “look great” well my brain and my body are attacking each other on a daily basis every minute of my life until the day I die. I have two associate degrees and a bunch of student loans to pay back due to my education, which I cannot use any degree I have obtained now. It took almost three years for me to get a hearing after being denied, and this is with my attorney. I need this SSDI check so I can give my kids a Christmas, a birthday, a Halloween costume, new clothes etc…. I am not doing this for me, I am doing it for my family, especially my children who are suffering the most.
I appreciate everything and everyone I have in my life and give my deepest gratitude to them all. I will continue to write my blog in hope of reaching out to others who may feel hopeless, useless, depressed, confused etc… so they know they are not alone. I am always willing to share anyone’s story, opinion, comments on this or any issue you choose, as long as it is not hurtful to anyone or themselves. I hope people can take what they can in all goodness out of this blog, and I hope it inspires others to speak up and speak out about their illness, a loved one’s illness or anything you desire to be heard. We are warriors and united we will fight this war every day in hope to live a full, happy and productive life but, most of all a happy one! Until next time… One Love!