"But you don't look sick"- ""Wow, you have CF you look so good"! Two statements that I hear often and quite frankly hate those words. I am not sure why, but they send chills up my back!
♥Yes I have Cystic Fibrosis! Why in the world would I say I did if I didn't? Yes, I know people do that all the time and that is a completely different disease and another issue all together.
I may not look sick and that you are right on. Come into my home see me on my oxygen or watch me do a treatment. Listen to my hacking cough and see for yourself. To date I have taken anywhere from 31-60 pills roughly a day. It changes drastically depending on my health. At the moment I am "healthy" and luckily not on as many as I have been in the past. Still over 30 on an average day.
Let's break down a typical meds list of a Cystic. Now these will and do vary from pharmacy to pharmacy and Cystic to Cystic.
Daily:
- Anti-Acids could be 2 different types of pills daily
- Oral Antibiotics anywhere from 3-5 different types of antibiotics regularly for maintenance.
- Anti-Inflammatory meds 1-4 pills for lungs once daily, sometimes twice a day depending on the Cystic.
- Enzyme anywhere from 3 to 21 capsules per meal (sometimes more) depending on appetite.
- Inhalers or Nasal sprays 2 to 3 of them
- Once daily, sometimes twice daily
- Nebulized medications anywhere from 1-9 different types of medications 2-4 times daily. These take a lot of time during the day.
- Vitamins at least 2 multi-vitamins plus 3 extra vitamin tablets once daily sometimes twice daily.
♡Diabetics (Cystic Fibrosis Related Diabetes) have extra meds on top of regular CF meds. Which is normally up to 3-8 medications daily, including insulin shots.
♥Transplant meds - include a variety of anti-rejection meds and anywhere from 1-7 different medications daily. After a transplant some of the "normal" CF meds are no longer needed.
Each Cystic is different and will be on different amounts and dosages. Not all medications listed are automatically on a CFers pill lineup. With all of those medications side effects and simply living with CF other meds are also prescribed.
Others (Specific things not ALL CFers take these):
- Stool Softeners-Are given for digestion issues. Anywhere from powders to pills at least 2 times daily.
- Antidepressants- There are anywhere from 1-3 different types of anti-depressants given for daily depression and dealing whiling living with CF.
- Pain Medication- Sometimes the pain we endure is more than anyone should take. We can be prescribed 1-4 different types of pain relievers in oral, locals, IV, or patch forms.
- Muscle Relaxers - Massive amounts of coughing can really be hard on the body and muscles. There are several ways of fixing this issue. Physical therapy and 1-3 oral medications 2-3 times daily.
- Birth Control - There are several types of birth control. Female Cystic's have a 50/50 chance of getting pregnant.
★Reminder every Cystic is different.
Ok, back to the chit-chat. Not ALL Cystic's are in need of these meds and some have even more to add. So once you sit down and read it, hopefully it will help put things in perspective. I personally have to take medication from each category daily, minus the diabetic and transplant meds for now.
Also, depending on the Cystic there are over the counter meds that can be purchased. Such as sleep aids, vitamins, and nutritional supplements. That all varies on the CFer themselves.
So please next time you hear someone telling you they have CF, or any terminal, incurable disease, just don't say "But you don't look sick!" Believe me my medicine drawer, medical tests, medical levels, medical chart, and my X-Rays all look like I am indeed sick! You (Joe Schmo) just aren't privy to all of that.
★Yes, I am a "pill head" and if I wasn't I'd be dead! So there is the breakdown of all of the medication categories we have on a daily basis. Sounds crazy, but it's my life!
Poppin' Pills for CF,
Sandi
Sandi
