We all have those aches and pains or pull a muscle from time to time. Almost all of us have been through the ice, heat, rest the area that’s hurting crap. It’s never fun but at least you know in all few days it will began to heal.
I dealt with random stuff like this until 2007 it was becoming clear my pain wasn’t going to go away. I slipped a disk when I was 19 and it took awhile but it healed. I was doing laundry one day and I felt a really bad pain in my back. I couldn’t handle it, I couldn’t stand up straight or bend over. My immediate thoughts were dammit you pulled a muscle, time for the ice, heat and rest routine again. This time it didn’t go away it eased up a little. For the most part I tried to ignore it. I didn’t pay attention to the ibuprofen I was taking and how long I had been taking them until the bottle was empty. They didn’t help anyway but I tried to fool myself into thinking they were giving me some relief. At this part of my life I cooked and cleaned and did laundry every day. I’d push through the pain and take a hot bath and tell myself it was a bad strain it needed more time to heal. Little did I know I was doing more damage.
I finally went to the er after I heard a pop and I couldn’t stand up again, I honestly thought I was being a wimp. I had xrays done and the Dr said oh it’s just a strain it will heal it may just take a little bit. So I figured he was right after all he went to school for this. I dealt with this pain some days were worse then others. The bad days they were pretty bad but nothing like it is today. The pain got worse eventually I noticed my feet were numb the first one was the left one and I dint notice but the right one eventually got that way and it goes all the way up to my knee. I never stopped to think what was causing the pain. I did go to doctor after doctor trying to find out what the problem was only to come up with no real answers but more like suggestions. Which just made me frustrated it was really like no one took me serious, and like a dumb ass I just ignored the pain and stayed busy all though by now I was taking prescription pain meds. They helped a lot and honestly made it worse because when they helped I did stuff I shouldn’t have I pushed myself even harder. I had no idea of knowing the damage I was doing.
I had a mri done of my lumbar in 2009 it showed a few problems but nothing really bad. I switched to the best doctor I could have asked for he did xrays and said I had 3 herniated disks in my lumbar. He could actually see it on an xray he did a CT scan as well. I was so mad all these other doctors I had seen either didn’t I’ve a shit or see what he saw. Which ever way it was I feel I got screwed. This was 2012 I went through physical therapy twice one in 2013 and once Inn 2016 both times were awful it hurt me worse there were days Inn couldn’t walk or get out of bed. I cride a lot but Inn had to finish the therapy to get my new mri. I was blunt with the therapist and explained I knew it wasn’t going to help me I was just there long enough to get my mri and then i was done. There were several nights I had to go to the emergency room for a shot after therapy, yes I was on pain meds but they weren’t near strong enough. I suffered a lot and I got major depressed. It didn’t help that my Dr told me I should be in a wheelchair, I didn’t want to give my freedom up. My old Dr had moved by this point and I liked the new Dr he was young and caring. He got my mri then I ended up at the er in really bad pain I was panicking because I didn’t know if it was gonna ease up or be like this from now on. I got really lucky I had the best er doctor I have ever had. She focused on getting my pain under control first off she checked on me every 30 minutes, she gave me a high mg shot. It worked I felt relief I was so happy I cried and hugged her. She had went to school with my dr so she wrote him a letter. I guess I should also mention that day I had seen a pain management Dr because my Dr said my back was beyond what he could treat. I was going to need round the clock pain meds. The pain management lady was cold and rude she was like I don’t usually give medicine my first time seeing someone. Like really wtf????? She gave me a dumb patch btw I am very sensitive to adhesive and it literally ate my skin off. This was the same night I ended up in the er. The er Dr was so upset, she didn’t understand why and how they could treat me the way they did. She gave me a prescription for different pain meds that helped me. She was an angel I was at my breaking point.
After that I went to see a neurosurgeon, she was really nice even though before she looked at my mri she questioned how bad I was hurting. Once we went over my mri she understood so much better. She then got a paperclip and made it straight and poked my legs up and down starting from my feet, I couldn’t feel it at all I thought maybe she was just barely poking me until I saw spots of blood. She was shocked I couldn’t feel it I wasn’t I knee I had like zero feeling until you get above my knee even then it’s still somewhat numb. She then ordered me a 4 hour full back and brain mri, I’m chlorostophobic so I freaked out about that. She explained I’d be knocked out for it due to the fact my pain was so bad she knew I couldn’t stay still that long without being in excruciating pain. She about lso ordered an eeg, which is where they check your nerves with electric stimulation and then with some small needles. I was nervous about it too let’s be honest no one likes getting poked on. The only thing I didn’t like about the Dr was the fact she was all fan girl about my neurofibrmotosis, she had never seen a patient with nf, so she was overly excited. I Hate that but it’s something I have dealt with my whole life.
I went and had the eeg done which wasn’t much fun but it was something I couldn’t avoid. They had the machine turned all the way up I couldn’t feel it, until above my knee then it felt like little shocks but it Wasn’t that bad. A dr came in to do the needle part again the machine was turned all the way up my muscles jumped a few times mainly above my knee. Then he had to do my arms to make sure which nerves were effected now that shit was awful I could feel it and it hurt. The Dr said he had never had the machine be turned up that high and not have some reaction he thought the machine wasn’t working right at first. When it was finished I was sore and had bloody spots on my legs and arms. I was just glad it was over. Later on I had huge bruises from the test on my legs and arms.
It took me a long time to get my mri done, I have asthma and kept getting pneumonia and bronchitis. I was basically sick from October until March off and on, they wouldn’t let me have it done within so many weeks of being sick because of my lungs and the anesthesia. Anyhow I finally got my mri on April 5th I was freaking out thank god for xanax or I’m not sure I could have went with it. I hate anesthesia so much I had my gallbladder out before and had a ad experience so I was super nervous. We had to get up at 4 am, not that I slept. We live about 2 hours away from the hospital. I was ok on the ride down there probably from the xanax, the Dr gave me so I wouldn’t panic really bad, I’m glad it worked. After we signed in and got to the waiting room it didn’t take long to be called in the back. The nurses were really nice she said i could keep my shirt on and my leggings since there was no metal that way I’d be more comfortable, it had a huge oversized tshirt on. I was really glad it didn’t have to wear a gown. They let my husband go in the room with me, that made me feel better. He stayed while they attempted to start an iv in each arm, both of them failed. So I got it in my hand then they put the mask on me and I was out.
I woke up to ice packs on my crotch behind my legs, on my chest and l around my head. I was pretty out of it the nurse explained I got to hot and threw up so I got a shot in my leg and that my body temp was to hugh that’s why I was covered in ice. She said they have fans and the ac turned really low but after being in the machine for four hours it caused me to get really hot. Then she went and got my husband and gave me a sprite. I had the worst taste in my mouth the rest of the day. I don’t remember the ride home, or even coming inside my house. I slept most of the day and night.
Then I figured it would be fairly easy to get my results, we’ll guess again. I went to a nurse practitioner that I see from time to time she basically told me she would get the results and call me but never did. I called to make an appointment to see my neurosurgeon only to find out her mailbox doesn’t exist so I thought I had the wrong number. I called the neurosurgery department only to find out she retired, I was like wait what????? Retired I never got a letter or a call I didn’t get shit!!!! WTF!!!!!! This really upset me I hate having to start this process over and explain all my shit to a new doctor. Even though they could read my chart that won’t do. I have to be seen for the new doctor to give me the results, my appointment is May 1st but I did get to look at my results online most of which I don’t understand.
Meanwhile I am hurting so bad I am depressed and had to start medicine for that. I also have major anxiety not knowing if the pain will ever ease up. I can’t sleep good, waking up being in horrible pain and going to sleep that way is no kind of life. I can’t hardly walk so now I’m relying on a wheelchair. I can’t do anything that I love to do, I love to cook but I’m hurting so bad by the time I’m done so I rarely do it. I feel like I’m a prisoner of my pain. I do have a good day here or there but not many. I hate the cold or any major weather change it makes the pain worse. Honestly I have thought about suicide more then once, I’d never do it because of my family but I’d give so much just to have my pain level at a 7 with 10 being the worst. Yes I am on strong pain medication it’s helps some, but because of the junkies and assholes selling medicine doctors are very cautious.
I know I have severe nerve damage that surgery can’t help, I also know I have several disks that are basically dissapearing which is causing a domino effect. What is there is pressing against my spinal sac. The nerve damage is what is making my feet and legs numb. I guess I’ll see if I have any tumors when I see the new doctor. Maybe she will have some new ideas of what may help me.
For now I’m a prisoner of my chronic pain. I’m thankful for the help I have from my husband. I know it’s not fair to him he didn’t sign up to be my caretaker. I hate that simple things like taking a bath is like a chore now, even grocery shopping riding on a scooter is a pain by the time I get home I’m hurting so bad I’m crying not because I want to just I can’t help it. Frustration doesn’t begin to describe how I feel.
If you suffer from chronic pain or an illness I’m sending you positive thoughts. I feel your pain! 💕💕💕💕