P a i n .

Have you ever been so consumed with pain that basically every second you feel like your about to go insane?

My pain keeps growing and has now graduated to such an intolerable degree. I feel as though I’m not only a prisoner of my home, my room, my body but now my Bed. I am rarely able to move around even in the space of my bedroom. I have a commode, portable sink, mini fridge, and microwave in my room. All the bare necessities making it easier for myself. The more I move around the more pain I must endure. So having them all in one place though still difficult is much easier than moving throughout the whole house every time I’m in need of something.

I thought I felt trapped by this disease before. But as the years go by and the severity increases with each additional diagnosis. I have come to realize more and more what being ‘trapped’ truly means. And I then come to the realization that I’m only starting out in my mid-life years. So if I’ve not yet reached even half the journey. Where exactly is this path of PAIN taking me?  

Now a more detailed look into what I endure everyday will come in a form of a list. This is real. I’ll be real (no edits to d list). I couldn’t make this up in my dreams. It’s a bit unnerving laying bare things that with my insecurity - makes me look ridiculous, pitiful, and just embarrasses me. I mean, from my early twenties till now at the age of 43 it seems as tho I blinked and time has just past me by. As though its been only a week. However, it’s not been a week but 20yrs. This list reminds me how I missed out on my early adulthood where I finally graduated and became apart of the world it seemed. At this stage if I was healthy I would’ve been building deeper relationships, going out to have fun, dating, breaking up and dating again - marriage, kids, house, picket fence etc. Instead, my only highlight is having “dated” once and going to consecutive weddings of college and church friends. 

Then my body was struck down. This time, not simple enough to bounce back from - immobile. Beginning in my twenties, I couldn’t understand what was going on or why my body was behaving the way it was (shutting down). Over the years, I slowly began to withdraw from society, community, MY LIFE! 

My pain kept growing and growing with no explanations from the doctors. Some illnesses were difficult to diagnose in the beginning years but as time went by I was diagnosed with an illness almost every couple of years. I’d spend months and months educating and re-educating on these new (invisible) parts of myself. It was a difficult transition for me. It was a dark time. I went from being a social butterfly, traveling all over NYC (getting home at 1am or 2am), to barely being able to take those few steps needed to get off the subway. When that happened I was so so frightened. I didn’t know and couldn’t understand what was happening to my body. I was so exhausted - severely, heavily fatigued ( like A TON was pressing down on my body). I just couldn’t move. Yet I still had to somehow make it to my destination. The anxiety of being stuck in place instigated all d pain in my body, making things oh so much worse. Luckily an elderly lady saw me struggling and helped me to the turnstiles. Next, the last stretch, a 10-15min walk took me about 45min. At the time I was unaware of the fact that I had chronic fatigue syndrome. This is just one example of a symptom that comes along with one of my illnesses. Just one in a battery of symptoms that come with each disease/illness. 

Imprisoned in this body by the pain, isolated, alone, depressed, and cut-off from society. That’s where I seem to have ended up. In addition, I’m hospitalized so much that it’s an unnatural amount of times even for someone with Sickle Cell Anemia. Each of my illnesses bounce off of and affect each other (increasing stress, pain, fatigue etc.) that the length of stay in the hospital is much much longer. It’s a lot. So I typed up all of my medications (adding & taking away as things change) and also my health history so it’s easily accessible for the doctors and myself. Especially, in the instances that I’m unable to talk because of the amount of pain I go through. Most of the time I don’t have anyone around who can talk for me and who is knowledgeable of my history. So I have everything written down as shown below. A detailed history of one’s health is really important so doctors can have a better understanding of what’s happening and prevent any kind of complication or major medical problem from occurring.

A) HEALTH HISTORY :

1. Sickle Cell Anemia ( SS )  

                *** Was once part of a “study” group / Guinea Pigs given HYDROXYUREA to test its                                         effectiveness on reducing pain crisis. *** 

                                ~> worked 4 me 4a while then it didn’t anymore. But I tried it 2 more x’s after. 

                                ~>> Last time I took it was to prove how unhelpful it was in order 2 qualify to do the                                             Bone Marrow Transplant!

2. Fibromyalgia 

3. Migraines ( receive Botox Trmt every 3months )

4. Colitis

5. Insomnia

6. Chronic Fatigue Syndrome 

7. ARTHRITIS of d Knees

8. HypOtension ( low blood pressure )

9. A vascular Necrosis of both shoulders and both hips.  

10. Bells Palsy ( onset : 2008 / ‘09 ) 

11. History: C-diff

12. Blood Clot rt collarbone  ( 2012 / ‘13 )

13. Bone Marrow Transplant - ( 2011 )

14. HEART Murmur ( from infancy )

15. Gall bladder surgery ( 1993 / ‘94 )

16. Left shoulder ( ARTHROSCOPY {‘98 ?} )

17. Pruritus of skin (?)

18. Lumbar Degenerative Disc Disease (DDD)   

              - Spine-health:

• Degenerative Disease L-spine, Lumber Spine

                     •  Arthritis of d Spine

        19. Cervical Degenerative Disease 

        20. Costochondritis 

        21. Atelectasis 

B) A L E R G I E S :

C) MEDICATIONS :

Dilaudid: 2 - 8mg pills (16mg) every 4 hours as needed for mild to severe pain

Botox Injections: every 3 months 4 Migraines (31 shots 2 scalp & neck)

Duloxetine: 60mg 2x daily 

Docusate: 75mg 3x a day ( as needed )

Propanol:  5mg 3x daily ( 4 migraine )

Sumatriptan: 100mg upon onset of headache 2hrs repeat if needed ( max 2 in a day )

Lyrica: 200mg 2x daily

Bultalb-Acetamin-CAFF: 50-325-40mg tab (Q4 as needed)

Zolpidem: 5mg 1-2 tabs at bedtime as needed 4 sleep

Methocarbamol: 500mg 2 tabs 4x daily

Folic Acid: 1mg 1tab daily

Motrin: 800mg I tab every 4-8hrs (as needed) 

Pantoprazole: 40mg 1 daily

Topiramate: 100mg 1 tab 2x daily 

Vitamin B-12: 1000mcg 1x daily

Nasal Ketamine: 5mg/0.1 ml nasal: 3-4 spray as needed every 2 hrs (48ML bottle)

Fluticasone Propionate: 50mcg: 1 spray in ea. nostril

Vitamin D-3:(2,000 units per day)

Oyster Shell Calcium:  500mg 1tab w/ meal

Reglan: 10mg as needed

Multi-vitamins: gummies (2) 1x daily 

Albuterol: 2 puffs every hrs as needed 

Nebulizer Treatment as needed

Miralax 

Previously on:

Fentanyl: 175mcg every 3 days (100mcg patch & 75mcg patch) 

                        - stopped bc of constant back-orders (caused withdrawal symptoms & pain crises)

Celebrex: 400mg take with a meal