Tag: support

Been a while

Hello all. I know it’s been a while since I lost wrote. Things are still incredibly stressful. Living here, at my dad’s has been feeling more like a prison sentence than anything.  I just feel like there is no support here, and just constant stress and tension. Which causes my son to act up. I’m just so over it all.  Receiving a new diagnosis was even more difficult. Now I have POTS, postural orthostatic  tachycardia syndrome. I’m learning to accept this as well.

I’ve had good days, but mostly bad days. The pain and brain fog never really goes away. The heat intolerance and inability to sweat, I sometimes fear could kill me. Though here, living in Florida, what am I to do??? My boyfriend has found a bed that has a cooling system built in.. I’m currently working with my insurance to see if it could be covered by my durable medical equipment. If not, I’ll have to pay for it, but at this point I’d do it. I’m getting too hot to sleep at night, too hot to the touch. Though my boyfriend is always there calming me down, keeping me positive.  I’ve learned that through all this, he’s a great man, and amazingly supportive boyfriend. I’m truly blessed to have him. He keeps me positive, he reassures me that when I end up in a wheelchair he’ll be right there.  We’ve been told by doctors I shouldn’t be driving. Bye bye freedom

I pray things get better, if not, I have the love and support of my family, my boyfriend and my friends.

Ups and Downs

The past few weeks have been difficult. I’ve had my ups and downs. My biggest up being working things out with my boyfriend. I’m happy, and hope things continue on the path that they’re on. He’s been extremely supportive of my treatment and going to see new doctors that can help.

Today I had a consultation for physical therapy. It was a let down. The Physical Therapist felt at this time, aggressive therapy would not benefit me, and could potentially hurt me. As we don’t know the exact cause of my muscle weakness, how can we treat it? He gave me some home exercises to try, and see what happens. I will give it a go!!! I’ve finally accepted the fact I may be wheelchair bound, but what hurts me the most is my parents refuse to accept it. They push me and push me, i’m tired of just pushing myself so much to the point i’m in constant pain and constantly exhausted. I’ve begun having major trouble eating, and going to the bathroom, but not once did anyone suggest going to the hospital, after my doctors had mentioned it to be necessary. I just sometimes feel so alone, and upset. My friend Stephanie has been absolutely amazing through it all, as has my boyfriend. They both have truly been blessings. They are there to talk when I need someone, and to just be a friend, or confidant. I’m truly lucky for them.

I was referred to Vanderbilt, my dad was annoyed, he thinks i should take time away from the doctors to see if I get better… NEWSFLASH I’m not getting any better!!! I’m getting worse!!!! I can’t get into Vanderbilt until November, but I am on the waitlist. I just hope something opens soon. I hope my family becomes a little more supportive, because lately they really haven’t been.

I’ll stand strong though. I’ll keep fighting on, because i’m not going to give up.

Down Days

Never-lose-hope

I have had a few good days then a lot of bad days recently. Yesterday I spent pretty much in bed or on the couch. I just had no energy, and the pain was hell. I saw the Rheumatologist on Wednesday, she is now checking for Sjogren’s Syndrome. Joyous..Another possibility to add to the list. She was great, and put me at ease. She was very thorough and explained as much as she could to me, and answered all my questions. I even broke down with her.. “Is this my life now?” I asked her. She held my hand and said “Sweetie, it could be, it could get worse, could get better. Just remember your amazing strength and beautiful son. Never give up.” I couldn’t help but cry. How many doctors would help a patient like that? How many would take the time to truly care???? I felt honored to have her as my doctor. The next day was spent with the Electrophysiologist in regards to my pacemaker. He confirmed my biggest fears… That the previous surgeries were not necessary in any way, and I’m not completely dependent on my pacemaker. He referred me to a specialist. One that is an expert in POTS and Dysautonomia. He put me at ease, and helped me to not be so scared. It just means more traveling, for more doctors. 

Yesterday I woke up in an awful mood. I was jittery and just on edge. I just couldn’t shake the feeling. I was so tired, I wanted to just sleep the day away. I pretty much did. Between that and the pain, I didn’t want to do anything. Though I always push myself, i’m learning when to push and when to back down! I’ve still not accepted this. Accepted that I now have limitations, and I can’t do everything I used to. That I am, as a person, changing. I’m scared of losing who I am, the woman I’ve always been. I don’t want to do that. I’m terrified of it. I’m so scared of accepting things that i’m just avoiding, ignoring. I know it’s wrong of me to do. I know in time, I will finally accept things, but right now, I just can’t, I refuse.  I want love, a partner, someone special. What if I never find that?? I’m scared of that. I’m scared of being alone through this.

It’s a learning process. I’m still new to all of this, and I will continue to search for answers and continue to do what I can to keep my independence. I will not let this control me. I will not let it beat me down, I will not let it take the woman I am. I’m learning.. The woman i will become, she will still be me..a stronger me, a fighter. That’s what I am.. That’s what i’ll do. Fight, Remain Strong, and through it all, never lose faith in myself, God and my family.

 

New Day

new day

 

 

Today was a new day. A new day for anything to happen! I’m currently visiting my mom in a small town in Tennessee. I’ve been here since the 14th. It’s been eye opening. I’ve been able to relax, and let go of the stresses and make decisions. I’m at peace. I’ve been working on not keeping everything bottled up, instead I call my one person, I know she’s there for me. I’m lucky to have her, and my family and friends. Their support is so appreciated.

I’ve been trying to get strength back in my legs, without having to use my walker all the time. I don’t necessarily need it, but It helps balance me on my bad days. I’ve been alright for the most part without it. Though it is tiring, and painful, i’m working through it. I’m determined! My hands are cramping more often, I no longer write unless absolutely necessary. My stutter comes and goes. But one thing that doesn’t is my strength and courage. My positive outlook on life has truly helped me with this. I have made a vow to myself to not dwell on the bad, but to look at the positives in my life. I’m alive, I have an amazing son, supportive friends and family. In all words, I’m blessed. Truly blessed.

There are days i’m feeling down, and sad. They don’t last, because despite it all, i’m a fighter. I’m a believer that though this disease is terrible, it’s something I was chosen to go through for my strength, and I will not fail.

Love is something I dream of, yet i’m terrified of it. Why would someone want to deal with all this, that’s what I ask myself. Then I think, I’m a great person! I’m an amazing woman. This doesn’t take away from that. I’m still me. I’m still strong, courageous, beautiful, caring, positive, full of life! Someone will see this, and I will have my happy ending.  I’m sure of it, though scared.

To you my dear readers. Love, life, and laugh. Be happy, and positive. Make everyday a new day!