Tag: pain

I’m back!

Hello All!! Sorry for the delay, I was going through a rough time. I’m working on bringing more positive actions and feelings into my life. This blog helps with so many things. I don’t want it to be all negative. I have bad days, but I am trying to work through them.

For my first new blog I’m taking it into a new direction!

Something I really love to do is write. I love writing. I also love reading, and cooking. Though cooking is sometimes difficult, I refuse to give it up! My goal from now on is to write about everything, and focus more on the positives in my life, than the negatives! 🙂  I have worked towards finding my faith again. I find it helps me find peace, and calmness in dealing with this disease.  In recent days I’ve taken a trip to Colonial Williamsburg with my son. He had so much fun! It was incredibly challenging, but you know what?! I did it!  We went for two days. I took my walker, and we sat whenever possible. We had so much fun. It was a very needed trip for us. I also spent time with my boyfriend, and it was so special. .. I feel so blessed that this man loves me so thoroughly to take that step with me. We’re also working on purchasing a house together! We’ve also been thinking of a few ideas for him in regards to work. He’s excited about future changes as am I. Together we’ll make it happen.

Most wonder how I stay positive. It’s not always easy, but I find it necessary to try to think as positive as I can. Yes I have this debilitating disease, it’s taken my independence, my legs, and some of my hearing, but it hasn’t taken my faith, my strength or my love. I’m still here, still living and that’s what I need to focus on! A friend of mine told me a huge surprise. Her mom has a few electric scooters, and they have offered to give me one. I was in shock, I cried. I told her I couldn’t repay her. She said my friendship, and love is all I need to give her.  So now I will be able to go on walks with my son! Go to theme parks, and do so much more! I’m truly blessed with my friends and loved ones.

As for you my dear readers. When life seems dark, light will always shine. You must simply look inside yourself, or a loved one for that light. Don’t let darkness overcome you!

focus-on-the-light

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

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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!

Painful Day

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Today I woke up and was in tremendous pain in my hands and legs.. I had problems speaking. Which is a new problem. It’s as if there is a disconnect between my brain and mouth. I just speak gibberish sometimes. It lasts a few minutes, then i’m fine. Today feels like it’s going to be one of my really bad days. I’m hoping not. I have way too much to do.  I’m visiting my mom in Tennessee for a week, but before that I’m spending a few days with my best friend in Tampa, Fl, (I live on East Coast, FL).  I spoke to someone recently, very dear to me. Like a second mother to me. She told me chronic illnesses are awful, and that I’m refusing to accept it, she’s right. She knows me so well. I’m terrified of accepting that this could be my new normal. Is this truly how my life will be from now on?? Medications to control different things???  She listened as I cried, and screamed out my anger and frustration. She has always been my rock. She’s right, right now, i’m going through every emotion I can regarding this disease. It’s alright for me to be angry, for me to feel lost. I feel as if i’m losing the person i’ve always been. I’ve tried to remain strong and not show the emotions i’ve felt, the anger and grief over this, but I couldn’t keep them bottled forever.

Doctors appointments are insane. I see the Rheumatologist the 24, the Electrophysiologist (special heart doctor) the 25, My EMG Nerve Test the 30, and see the GI May 3, since I have gastropareisis.  Gosh, I never thought i’d have to see this many damn doctors.  The good thing is, if something happens while i’m out of town, i’m an hour and a half away from the Autonomic Dysfunction Treatment Center at Vanderbilt. 🙂  

How can I accept that this is the new normal for me??!!!!! HOW??? How do I go from the independent, always on the go woman, to barely able to walk through the grocery store, need help getting in and out of a car woman I am now??? I can’t….I can’t accept this, not yet.. Then I get so angry that i’m so alone in this. Where is my partner? Why isn’t he here! Will I have to suffer through this alone? Will I never marry? Silly questions to think about, but I think about them. I want to marry, I want to walk down the aisle towards the man I love and become one. I want to find a man that loves me despite this disease. Does such a man exist? Will I be in a wheelchair by end of the summer this year??? So many unanswered questions for my Type A mind.

This I do know. I’m strong, I’m loved by my family and friends. I have an amazing support system. I have a beautiful son. I have my faith. I will be fine. I will accept this in time. I will have to. For I have no other choice.  

Don’t take the small things in life for granted. You never know when things can change, and how much they change. Love with all you have, all you are.. And you know what? It’s ok to be sad, angry or frustrated!! We don’t have to be strong all the time. We can cry! We can lean on our spouse. I’m always here for those that wish to talk, share stories!

Be safe, and be free my readers! Until next time!