Please don’t be sorry...
Please don’t be sorry....
I’ve learned so much through this process. Mainly to be thankful for what I have. Because it can always get worse...
What I've learned through the process
I have said a few times how hard things have been since I had a intrathecal pump implanted. “My last hope” “There’s nothing above this treatment” to relieve my pain I’ve heard my doctor say multiple times. For the first time ever I took it at face value and believed him. I wanted to believe him so desperately I stopped asking questions.
This was supposed to help my pain, not make things worse.
With morphine and a Baclofen (muscle relaxer) being electronically pumped into my spinal column you’d think I’d be in heaven... No no not even close it’s been the worst experience I’ve ever had to endure and suck up so far in my life (it used to be easier to hide when I could actually walk). I wanted something-anything to help my pain and FYI that saying “no pain no gain” can shove it!
I want to go back to the old pain I was used to.
All I want is to go back to the pain I thought made me insane and that I couldn’t bare- I’d throw up in my mouth and swallow it so regularly from the pain yet gladly take it all back. I’d do anything to go back to my medication that I thought didn’t work any longer. I promise I’d be happy with that pain... That pain still let me walk, that pain still let me wrap gifts play board games with the kids, even clean the house up a little on a good day and do laundry if it was taken to the machines. That unrelenting pain still allowed me to shop for groceries or even leave the house.
This feeling of nearly passing out comes daily.
This is my 9th day in row I’ve been inside because I can’t handle even an hour in a store without the overwhelming feeling like I’m going to pass out, I’ll begin to sweat profusely feeling like I’m having a heat stoke, getting really dizzy, seeing black dots, finding it harder to breathe with every step having to wear tank tops in December so I don’t overheat. I can’t even wear my fall sweaters this year and that’s just rude! I’ve actually had to buy a fan that is double bladed and wraps around my neck, bring ice packs to pat myself down and cold water to drink. I need know exactly where I can sit down in every store I go to just in case I pass out so I don’t hit the floor. All that so I can get milk, bread or just a few things we absolutely need at the house.
Then there's the nausea and lack of appetite, too
Then there is randomly often vomiting that has taken me to the ER because I couldn’t even keep zofran (the best nausea medication) down even a little cap of water wouldn’t stay in. I’ve lost 30lbs not just from being sick but nothing ever tastes good anymore even when I’m craving my old favs. My new favs are bagels, dinner rolls, Arby’s plain RB and gummy worms. This is my new diet.
Sleeping and falling asleep...
I sleep about 18hrs a day but try really hard to stay awake. I just fall asleep sometimes without warning. During a conversation, watching tv, reading, even texting or writing will put me right to sleep. Today is a rare day but I still dozed 5 times writing this lol...
My updates since I've been away for a bit
That is why I’ve been AOL for awhile. I can’t stay awake long enough to actually say anything worthwhile. When I am awake it’s usually planning out my time to sleep or rest up so I can go to my doctors appointments I have to give myself at least 3 days to sleep just to be out of the house for 4 hours if I don’t have enough time I will usually have to reschedule.
Trying to treat the pain and inflammation
I now just sit on my heating pad to loosen my muscles that I can’t even begin to describe the pain and ice to decrease the inflammation everywhere in my body. I can barely take Tylenol so it takes everything I have to take my nightly meds. I’ve tried in-home physical therapy and I couldn’t even walk around my table without breaking into a sweat and feeling that dread of almost passing out. It makes me start to panic sometimes because no one has a clue what it is or why it’s happening.
I do know if I can’t fix this I’m not sure what I’m going to do or how my life will go. I am changing the medications in my pump here in a few weeks and trying other multiple things to help but now everything is skewed how do we know what’s what now?! We are officially shooting in the dark.
Adjusting to new needs
I’ve been trying to figure out before and after pump symptoms but with every complication comes another symptom and I’m having a hard time keeping up. I do know, I never needed a cane or a walker. I never needed to fly as a disabled passenger and I’ve never visited my son and grandchildren that turned out to be an absolute disaster. I ended up leaving early. I was devastated.
I couldn’t hold my grandson. Their couch was too uncomfortable to sit on so I spent 10 days in my granddaughters room sleeping or playing or rather watching her play. The best thing about small children and pets is that they truly don’t care how you look or what you can or cannot do as long as you show them love...
I tried to help my family
Unfortunately my oldest son and daughter-in-law felt a little different since one of the reasons I got the pump was to go help them when they moved from Nevada to Texas alone with 2 babies mind you my son is 20 and has never lived anywhere but Nevada. I’m 37 so I figured no problem I can absolutely help you with the kids while you transition into your new life. Instead I felt I was a third child since they had to adjust their life for me. I knew I shouldn’t have gone I was nervous about it, even had a partial panic attack on the way to the airport. I figured I should go no matter what instead of breaking my promise.
I made the wrong choice. It took my son a minute to call me after I came home mainly because I got into it with my daughter-in-law. I started to be embarrassed, emotional and defensive when my son would come home from work so I just got an early ticket home... I seemed to aged 100 years in 3 months. All I ever wanted was to relieve my pain so I could have a life. Except life has no guarantee.
I have become afraid of tests and doctors now
I had visions of everything I could do and blind trust in a doctor that rushed the process without giving me all the information even skipping a step that seemed to be crucial in my case. I had a reaction to the medication that they put in so we are changing it. Jeez who knows what the next drug will do.
It has caused me to be so afraid of tests and doctors I just can’t suffer any more than I am today. I have to have a MRI for my MS and a sleep study that I can’t imagine doing. I’m having problems that I don’t want to admit just so I don’t have to go to any other doctors. The best way to stay healthy is not to see a doctor then you’ll never know. Unfortunately with all the problems I have I was born to live in doctors offices and autoimmune diseases usually rear their ugly heads at some point in life having 2 that over lap seemed inevitable but as many of us we suffer for years and many doctors before our DXs actually exist. It’s not like I knew that this whole time. We usually have to fight to find a doctor to believe us. Doctors and people alike thought I was crazy to want these as a DXs.
I didn’t want it them I already knew I had them there’s a big difference. I just wish I could go back but a lot like our diseases once it’s gone it’s not coming back.
Looking forward to what's next for me
I’m trying to look forward and I’m not giving up but I am a realist who can actually see the present and I’m officially terrified of what’s next even if it’s inevitable.
Here’s to never giving up even if your entire body is trying to tell you different.
Nothing is over until it’s over.
Right now, what RA tips would most be helpful for you?