I'm not sure that this is the proper title for this blog but this is all that is coming to mind. It has been a difficult week with fighting to get a medication that Nicole needs which I will write about in another blog as soon as I have it all straightened out.
This blog today is about my frustration over people and how they will say and assume things about Nicole and her illness but they do not live her life nor are they qualified to even make assumptions or give there opinion without knowing what Nicole goes through.
I am tired of people saying that Nicole's illness/health issues are over emphasized and that it is no harder for her to travel, go on a day trip to Disney etc. than it is for anybody else. This makes my blood boil. I would say to anybody with this attitude to come spend 24/7 for a week or two at our house and observe what Nicole goes through before you make assumptions that are not correct.
I have been very focal on facebook about the journey that Nicole and our family goes through with Nicole's illness. I will say that even though you can look at Nicole without her oxygen on and she looks perfectly healthy SHE IS NOT..... she has a rare, life-threatening, progressive, incurable disease.
I agree that Nicole should be treated as normal as the next person and she shouldn't be looked at any different because of her health issues/disability than anybody else and as much as I hope and pray that she was normal and healthy she is not and at this point in time it is safe to say she never will be. Every day Nicole fights to have a decent quality of life. Nicole can't just be spontaneous and go out somewhere with no thought or planning this just can't happen.
Travel is a real big issue for Nicole. On Friday of this week we will travel to Gainesville which is a 2 1/2 hour drive each way from our home so Nicole can have a consult at the cardiac clinic at the transplant center at the University of Florida. I have already starting planning for this trip. I have a master checklist of all the things that need to be done or make sure I have for this trip.
The biggest obstacle that Nicole faces with any type of travel is oxygen. Her portable concentrator will only last about 3 1/2 hours because the battery needs to be recharged. We have a pack that plugs into the wall and this charges her battery. There is also a charger for the car but the problem with this is it doesn't fit in every lighter outlet in every car so I have to make sure it does in ours. We will have to find a spot in the waiting room close to an outlet once we get to Gainesville and then also use an outlet in the exam room. The ultimate would be that they would put her on a tank so she can get continuous as opposed to the pulse (by the breath) of her concentrator. She is very fortunate that she has two concentrators so we could and probably will take both with us.
We also have to take in account her pump changes which are daily. We have about 27 hours between pump changes before the medicine runs out. This means that everyday about the same time I have this event scheduled in my calendar in red because this is like one of the most important things that Nicole needs to do on a daily basis. We will be gone from 6:00 a.m. and probably not returning home before at least 4:00 p.m. Now I have to decide how we are going to make sure that Nicole doesn't run out of medication because changing a pump in the car or restroom isn't an ideal situation and should be avoided. Does the schedule need to be changed leading up to this day etc? More than likely yes.... just to be safe rather than sorry. All the supplies for a pump change and/or a site change needs to be taken with us along with the medication and the pump.
We will also have to take all her other daily medication so basically it will be her pill box for the day. She will need to take a pillow and blanket so she may rest during the drive. We also have to load in the wheelchair because the walking is too much for her so Rick and I will take turns pushing her. She will have her concentrator in the chair with her. We will also have a big jug of water in the car so she stays hydrated. She will also have things to do with her whatever this may be. I also like to make sure that she takes a change of clothes (just in case of vomiting or diarrhea). Also needs some snacks to take along just in case. Nicole will get nauseated if she is hungry.
It is much more difficult if the trip is longer than a day trip and involves flying. There are so many rules and restrictions when it comes to oxygen and those who travel with it must know exactly what the airline requires. When we went to Hawaii in 2011 the airlines were still supplying O2 on the flights. I believe now they do not anymore. You need to know how long the flight is because most of the time the concentrator isn't go to last long enough for a flight. It is something that really needs to be planned for down to the smallest detail. In 2011 you also needed a script for the O2 from the doctor. Nicole can not walk through the x-ray machines with her pump nor could her inhaler (Tyvaso) go through the x-ray machine when we went to Hawaii. Nicole also needs letters from the pharmacy stating all of this as well.
I would challenge anybody who feels that Nicole or any other person who has a chronic "invisible" illness to get the facts before they judge somebody and say that they are faking it or over stating it. I would challenge everybody to take the straw test. Take a regular drinking straw and put it in your mouth and plug your nose. Then set a timer for 1 minute and breath through that straw. This is what it is like for Nicole and other PH patients to breath on a daily,regular basis. Then take a coffee stirrer and set the timer for one minute and breath through that and this is what it feels like for Nicole to breath after walking down the hall, up a flight of stairs etc. Another option would be to climb a mountain and see how the air thins and affects the breathing the higher up you go.
Then next time somebody wants to judge Nicole I say come stay with us for a week or two and spend 24/7 with her and then if you still feel her illness is over emphasized than that is fine. Just because somebody looks fine to the eye you never know what that person's life is like.